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>>WELCOME, GOOD MORNING. MY

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NAME IS CHRISTOPHER DONAHUE. MY

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NAME IS CHRISTOPHER DONAHUE

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SENIOR HISTORIAN AT THE THE

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NATIONAL GENOME INSTITUTE, WHERE

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I CO-LEAD THE GENOMICS PROGRAM

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IN THE OFFICE OF COMMUNICATIONS.

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I'M A WHITE MAN WITH GLASSES,

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BLUE EYES AND REDDISH BROWN

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HAIR. AND I HAVE A PHYSICAL

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VISIBLE DISABILITY CEREBRAL

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PALSY. I'M ALSO WEARING A BLUE

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AND WHITE STRIPED DRESS SHIRT.

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FIRSTLY I WANT TO ACKNOWLEDGE

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THE EFFORTS OF THE NATIONAL

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CENTER FOR MEDICAL

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REHABILITATION RESEARCH. NCMRR. 

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ITS DIRECTOR THERESA CRUZ, DR.

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THERESA CRUZ AS WELL AS NATIONAL

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INSTITUTES OF HEALTH. THE

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PLANNING COMMITTEE FOR THIS

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SYMPOSIUM, AND OUR AMAZING

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SPEAKERS AND PANELISTS.  THOUGH

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I CANNOT DO JUSTICE TO THE

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COMPLEXITY AND RICHNESS AND

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IMPORTANCE OF YESTERDAY'S

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PRESENTATIONS, I WANT TO

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ACKNOWLEDGE THE GRAVITY OF OUR

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DISCUSSION ABOUT ABLEISM THE

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PROFOUND DISPARITIES IN ACCESS

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TO CARE AND THE BARRIERS

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DISABLED PEOPLE FACE NOT ONLY

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MEDICAL CONTEXT BUT EVERY DAY

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LIVES. AS WE DISCUSSED IN

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DEVASTATING DETAIL YESTERDAY,

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ABLEISM IN ALL ITS FORMS IS THE

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DEVALUATION AND DEHUMANIZATION

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OF DISABLED LIVES OVER THOSE NOT

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VIEWED AS DISABLED.  ABLEISM

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LIKE RACISM AND HETERO

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NORMATIVETY IS EMBEDDED IN MANY

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OF OUR EVERY DAY INTERACTIONS

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AND IN THE VERY STRUCTURES OF

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SOCIETY. ABLEISM AND BIAS

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AGAINST PEOPLE WITH DISABILITIES

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CANNOT IN ANY WAY BE SEPARATED

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FROM OTHER DEADLY PREJUDICES

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AROUND SEX AND GENDER, AND RACE

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AND CLASS. AN UNDERSTANDING OF

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THE INTERCONNECTEDNESS OR

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INTERSECTIONALITY OF THESE

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REALITIES IS A PROFOUND TOOL FOR

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IMPROVING OUTCOMES FOR NOT ONLY

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DISABLED PEOPLE BUT FOR

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EVERYONE. WE NOW UNDERSTAND AND

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IN MANY WAYS THE COVID PANDEMIC

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MADE THIS CLEARER, THAT SUCH

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APPARENTLY OBJECTIVE MEASURES

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SUCH AS FUNCTION AND QUALITY OF

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LIFE ARE OFTEN WEBBIZED WITH

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REAL LIFE AND DEATH CONSEQUENCES

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FOR DISABLED PEOPLE AND FOR

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THOSE WHO ARE RENDERED DISABLED

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BY THE VERY SOCIETIES THAT MUST

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SUPPORT THEIR FLOURISHING.  

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HOWEVER, WE CAN BE INCREDIBLY

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HELPFUL. NOT ONLY IS NIH

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SYSTEMATICALLY CONFRONTING

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ABLEISM BUT ALSO IN THE

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BIOMEDICAL COMMUNITY AND SOCIETY

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AT LARGE THERE IS INCREASING

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ACKNOWLEDGMENT OF WHAT HAS

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ALWAYS BEEN THERE. THE

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FUNDAMENTAL IMPORTANCE OF THE

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LIVED EXPERIENCES OF DISABLED

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PEOPLE. AND THE DRIVE TOWARDS

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DISABILITY RIGHTS.  FOR MANY

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YEARS, DISABLED PERSPECTIVES

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WERE OFTEN IGNORED, DISCOURAGED

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IN BIOMEDICAL RESEARCH WITHIN

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WIDER SOCIETY BUT AS EVIDENCED

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BY THE CONTINUING CONVERSATIONS

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WE ARE HAVING HERE TODAY,

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DISABLED PEOPLE ARE EXPERTS,

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THEY ARE EXPERTS ON THEIR OWN

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FORM OF FLOURISHING, ON THEIR

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HEALTHCARE AND MEDICAL NEEDS,

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AND HOW THEY WOULD LIKE TO

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APPROACH THEIR OWN FUTURES.  

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HEALTHCARE PROFESSIONALS AND

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DISABLED PEOPLE OFTEN BEGAN AT

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DIFFERENT PLACES AND DIFFERENT

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SPACES. BUT THE POTENTIALITIES

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FOR DIALOGUE ENGAGEMENT,

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COLLABORATION, AND I THINK

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HEALING AND JUSTICE ARE ALMOST

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LIMITLESS BECAUSE OF THE

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INCREASING ACKNOWLEDGMENT THAT

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OUR HEALTHCARE AND OUR SOCIETY

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IS THAT MUCH RICHER THROUGH THE

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NECESSARY INCLUSION OF DISABLED

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VOICES. THOUGH MUCH WORK NEEDS

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TO BE DONE.FUL TODAY'S

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DISCUSSIONS WILL NOT ONLY

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CONTINUE OUR DIALOGUE ABOUT

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ABLEISM AND SCIENCE AND THE

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SCIENTIFIC WORK FORCE BUT AS

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IMPORTANTLY UNDERSCORE THOUGH

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THE HARMS ARE GRAVE, THE

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OPPORTUNITIES ARE ENDLESS. SO

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WITH ALL THAT SAID BEFORE WE

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BEGIN I HAVE A FEW ZOOM

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HOUSEKEEPING NOTES. SO CAN WE

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SHOW THOSE SLIDES? HOUSEKEEPING

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ITEMS. PLEASE NOTE THAT THIS

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MEETING IS BEING RECORDED.  AND

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PLEASE MUTE YOUR MIKE AND TURN

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YOUR CAMERA OFF IF YOU ARE NOT

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SPEAKING. IF YOU ARE

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EXPERIENCING TECHNICAL ISSUES AT

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ANY TIME DURING THE SESSION,

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SEND A CHAT TO THE HOSTS.  

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ALTERNATIVELY YOU CAN EMAIL

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ABUCKLEY@INFINITYCONFERENCES.COM

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.

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AND S STARK.

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SSTARKE@INFINITYCONFERENCESCONF.

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AND PUT TECH SUPPORT IN THE

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EMAIL SUBJECT LINE. NEXT SLIDE

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PLEASE.  TO TURN ON CLOSE

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CAPTIONS, CLICK THE CLOSE

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CAPTION ICON IN YOUR TASK BAR.

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TO ADJUST THE SIZE OF THE

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CAPTIONS CLICK THE CARAT NEXT TO

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THE CAPTION ICON THEN CLICK

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CAPTION SETTINGS. PULL THE DOT

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ON THE SLIDER TO ADJUST THE SIZE

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OF THE CAPTIONS. NEXT SLIDE

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PLEASE.  QUESTIONS. SELECT THE

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Q&A BUTTON IN THE TASK BAR
ON

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YOUR SCREEN TO SUBMIT A QUESTION

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FOR TODAY'S PANELISTS. ENTER

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YOUR QUESTION INTO THE Q&A
PANEL

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THEN SEND -- THEN SELECT THE

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SEND BUTTON. NEXT SLIDE PLEASE. 

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OKAY. SO NOW WE WILL SEE A

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CONVERSATION BETWEEN DR. THERESA

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CRUZ AND DISABLE ADVOCATE

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GAELYNN LEA. THANK YOU VERY

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MUCH.

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>>WELCOME TO DAY TWO OF
NIH

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ABLEISM IN MEDICINE AND CLINICAL

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RESEARCH WORKSHOP. MY NAME IS

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THERESA CRUZ, DIRECT STORE OF

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THE NATIONAL CENTER FOR MEDICAL

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REHABILITATION RESEARCH AT THE

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EUNICE KENNEDY SHRIVER NATIONAL

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INSTITUTE OF CHILD HEALTH AND

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HUMAN DEVELOPMENT. I AM A MIDDLE

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AGED WHITE WOMAN WITH CHIN

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LENGTH BROWN HAIR AND BLUE EYES

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AND I'M WEARING A NAVY BLUE TOP.

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IT IS MY PLEASURE TO WELCOME YOU

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AND TO THANK YOU FOR JOINING US

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ON BEHALF OF THE LARGER PLANNING

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COMMITTEE AT NIH. THIS WORKSHOP

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HAS BEEN A TEAM EFFORT. IF YOU

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MISSED ANY OF YESTERDAY'S

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WONDERFUL SPEAKERS, THEY WERE

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RECORDED AND YOU WILL GET A

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CHANCE TO VIEW THEM ON NIH'S

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VIDEOCAST NEXT WEEK.  TODAY'S

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CONFERENCE IS ALSO BEING

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RECORDED.  WE ARE GOING TO START

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TODAY'S AGENDA WITH A SPECIAL

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TREAT.  OUR GUEST IS GAELYNN

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LEA, GAELYNN IS A DISABILITY

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ADVOCATE AND AWARD-WINNING COME

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POSER AND MUSICAL ARTIST.  SHE

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WAS 2016 NPR TINY DESK WINNER.

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THANK YOU, GAELYNN, FOR JOINING

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US AND AGREEING TO SPEAK WITH ME

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TODAY.

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>>THANK YOU SO MUCH FOR
HAVING

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ME. I JUST WANTED TO DO A QUICK

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VISUAL DESCRIPTION, I'M A SMALL

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WHITE WOMAN, SEATED IN A

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ELECTRIC WHEELCHAIR WITH MY DARK

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HAIR PULLED UP WITH A PINK

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FLOWER CLIP AND A FLOURAL DRESS

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HOLDING MY VIOLIN UPRIGHT LIKE A

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CELLO IN MY WHEELCHAIR. THANKS

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FOR HAVING ME TODAY.

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>>WONDERFUL. THANK YOU
START BY

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TELLING AUDIENCE A LITTLE BIT

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ABOUT YOURSELF?

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>>YEAH. I'M A VIOLINIST
FIRST

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AND FOREMOST, I STARTED PLAYING

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BACK IN 5TH GRADE THANKS TO THE

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HELP OF CREATIVE MUSIC TEACHER

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WE WERE ABLE TO ADAPT I PLAYED

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INSTRUMENT AND PLAY IT LIKE A

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CELLO IN MY WHEELCHAIR. I HAVE

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BEEN PERFORMING EVER SINCE AND

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BECAME A SONG WRITER MUCH LATER

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AT AGE 27 I WROTE MY FIRST SONG.

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A FEW YEARS LATER WON THE TINY

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DESK CONTEST AND STARTED TOURING

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AND DOING A LOT OF PUBLIC

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SPEAKING AS WELL ABOUT

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ACCESSIBILITY IN THE MUSIC

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INDUSTRY AND RECENTLY IN 2021

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CO-FOUNDED AN ORGANIZATION

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CALLED RAMPED RECORDING ARTIST

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MUSIC PROFESSIONALS WITH

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DISABILITIES.  I'M LOCATED IN

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MINNESOTA.

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>>THANK YOU. THIS
CONFERENCE

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TODAY SUBPOENA ABOUT ABLEISM,

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WHICH IS STEEPED IN A NEGATIVE

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BIAS AND NEGATIVE ASSUMPTION

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ABOUT DISABILITY. YOU HAVE

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SPOKEN PUBLICLY ABOUT HOW YOUR

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DISABILITY HAS GIVEN YOU

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FREEDFREEDOM. CAN YOU TALK ABOUR

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MIND SET AND HOW THAT IMPACTS

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YOUR LIFE?

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>>YEAH. I BELIEVE FIRST
AND

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FOREMOST THAT DISABILITY IS A

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FORM OF DIVERSITY THAT CAN BE

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CELEBRATED AND SUPPORTED KIND OF

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LIKE ANY OTHER FORM OF DIVERSITY

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OF BODY OR MIND. SO FOR ME

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DISABILITY ALLOWED ME TO KIND OF

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UNFORTUNATELY BECAUSE OF THE WAY

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OUR SOCIETY SORT OF PUTS

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DISABILITY OFF TO THE SIDE OR

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LEAVES IT OUT OF MANY

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DISCUSSIONS, IN A WAY THAT IS

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TERRIBLE AND OBVIOUSLY I WANT TO

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SEE THAT CHANGE BUT IT ALSO

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ALLOWED ME TO RECOGNIZE THAT

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MANY OF THE STANDARD AND

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EXPECTATIONS AND THE BOUNDARIES

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THAT SOCIETY PUTS ON US ARE NOT

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REALLY THERE FOR OUR BENEFIT,

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THEY ARE THERE TO KEEP US IN

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LINE. SO WITH DISABILITY PUTTING

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ME ON THE FRINGES I WAS ABLE TO

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DEVELOP THIS SENSE OF IDENTITY

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THAT FEELS VERY FREE FROM

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LIMITATIONS THAT SOCIETY MIGHT

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PUT ON ME. I THINK THE FORM OF

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KISS ABILITY, THAT REALLY EVEN

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IS EMBRACE THIS MIND SET OF

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FREEDOM, YOU DON'T HAVE TO BE

257
00:10:57,080 --> 00:10:58,880
DISABLED TO RECOGNIZE THAT YOU

258
00:10:58,880 --> 00:11:01,080
HAVE THE RIGHT TO BE THE

259
00:11:01,080 --> 00:11:02,200
AUTHENTIC VERSION OF YOU NO

260
00:11:02,200 --> 00:11:04,200
MATTER WHO YOU ARE. BUT

261
00:11:04,200 --> 00:11:06,040
DISABILITY JUST HELPED ME

262
00:11:06,040 --> 00:11:07,800
REALIZE THAT FREEDOM, THE INNER

263
00:11:07,800 --> 00:11:10,440
FREEDOM I FEEL AT A YOUNGER AGE

264
00:11:10,440 --> 00:11:11,480
I THINK BECAUSE I WASN'T

265
00:11:11,480 --> 00:11:15,440
INCLUDED IN A LOT OF THE

266
00:11:15,440 --> 00:11:17,160
NORMATIVE STANDARDS OR

267
00:11:17,160 --> 00:11:18,440
EXPECTATIONS THAT A LOT OF MY

268
00:11:18,440 --> 00:11:23,000
PEERS WERE.

269
00:11:23,000 --> 00:11:24,800
>>YOU HAVE ALSO SPOKEN
ABOUT

270
00:11:24,800 --> 00:11:26,200
THE REPRODUCTIVE HEALTH NEEDS OF

271
00:11:26,200 --> 00:11:28,160
PEOPLE WITH DISABILITIES. THAT

272
00:11:28,160 --> 00:11:32,240
WAS A TOPIC THAT WE COVERED

273
00:11:32,240 --> 00:11:34,960
YESTERDAY IN MONICA'S TALK. IF

274
00:11:34,960 --> 00:11:36,880
YOU COULD SPEAK TO CLINICIANS,

275
00:11:36,880 --> 00:11:39,800
WHO PROVIDE REPRODUCTIVE

276
00:11:39,800 --> 00:11:42,200
HEALTHCARE, WHAT WOULD YOU LIKE

277
00:11:42,200 --> 00:11:44,200
THEM TO KNOW HOW THEY ENGAGE

278
00:11:44,200 --> 00:11:48,640
WITH PATIENTS WITH DISABILITIES 

279
00:11:48,640 --> 00:11:51,880
I THINK THE BIGGEST THING THAT I

280
00:11:51,880 --> 00:11:53,480
HAVE FELT ESPECIALLY AROUND

281
00:11:53,480 --> 00:11:55,000
REPRODUCTIVE HEALTH

282
00:11:55,000 --> 00:11:56,320
SPECIFICALLY, IS THAT A LOT OF

283
00:11:56,320 --> 00:11:59,440
TIMES DOCTORS COME IN THIS WITH

284
00:11:59,440 --> 00:12:01,280
ASSUMPTIONS ABOUT WHAT I MIGHT

285
00:12:01,280 --> 00:12:05,760
WANT OR WHAT RELATIONSHIPS I

286
00:12:05,760 --> 00:12:08,560
MIGHT BE IN OR THE VALUES I HOLD

287
00:12:08,560 --> 00:12:10,480
OR CAPABILITIES THAT I WOULD

288
00:12:10,480 --> 00:12:13,000
HAVE IN LIFE. I THINK JUST

289
00:12:13,000 --> 00:12:16,640
RECOGNIZING THAT YOU ARE A

290
00:12:16,640 --> 00:12:17,800
PERSON RAISED IN A SOCIETY THAT

291
00:12:17,800 --> 00:12:19,920
DIDN'T TALK ABOUT DISABILITY OR

292
00:12:19,920 --> 00:12:21,840
EDUCATE AROUND SEXUALITY AND

293
00:12:21,840 --> 00:12:23,000
DISABILITY BASICALLY AT ALL,

294
00:12:23,000 --> 00:12:25,720
JUST TO RECOGNIZE THAT YOU

295
00:12:25,720 --> 00:12:27,200
PROBABLY DO HAVE ASSUMPTIONS AND

296
00:12:27,200 --> 00:12:31,560
TO REALLY WORK HARD TO LEAVE

297
00:12:31,560 --> 00:12:32,840
THOSE AT THE DOOR AND ASK

298
00:12:32,840 --> 00:12:34,120
QUESTIONS, WHAT DO YOU WANT?

299
00:12:34,120 --> 00:12:36,360
WHAT DO YOU THINK? WHAT ARE YOUR

300
00:12:36,360 --> 00:12:38,080
RELATIONSHIPS LIKE? TO REALLY

301
00:12:38,080 --> 00:12:40,960
LEAVE IT UP TO BE DIRECTED BY

302
00:12:40,960 --> 00:12:42,760
THE DISABLED PERSON THAT YOU ARE

303
00:12:42,760 --> 00:12:46,080
TAKING CARE OF BECAUSE IT

304
00:12:46,080 --> 00:12:49,800
DOESN'T HELP CREATE ENVIRONMENT

305
00:12:49,800 --> 00:12:51,560
OF TRUST IF YOU RECOGNIZE YOUR

306
00:12:51,560 --> 00:12:54,720
DOCTOR IS COMING AT A DISCUSSION

307
00:12:54,720 --> 00:12:56,800
WITH A VERY SPECIFIC VIEW IN

308
00:12:56,800 --> 00:12:58,440
MIND. THAT YOU HAVE TO EDUCATE

309
00:12:58,440 --> 00:13:00,640
YOUR DOCTOR ABOUT THE REALITY OF

310
00:13:00,640 --> 00:13:02,920
YOUR LIFE. IT IS MUCH, MUCH

311
00:13:02,920 --> 00:13:06,160
EASIER WHEN THERE IS AN OPEN

312
00:13:06,160 --> 00:13:09,080
DIALOGUE. CURIOSITY RATHER THAN

313
00:13:09,080 --> 00:13:10,320
ASSUMPTION SO THE BIGGEST THING

314
00:13:10,320 --> 00:13:11,880
FOR ME IS TO LEAVE ASSUMPTIONS

315
00:13:11,880 --> 00:13:13,800
AT THE DOOR. ALSO TO RECOGNIZE

316
00:13:13,800 --> 00:13:18,600
DISABLED PEOPLE WANT AND NEED

317
00:13:18,600 --> 00:13:20,440
THE SAME THINGS AS EVERYBODY

318
00:13:20,440 --> 00:13:21,640
ELSE BUT JUST MIGHT NEED SUPPORT

319
00:13:21,640 --> 00:13:23,240
IN DOING THESE THINGS SO NEVER

320
00:13:23,240 --> 00:13:24,800
REALLY WRITING ANYTHING OFF AS A

321
00:13:24,800 --> 00:13:28,000
BARRIER THAT CAN'T BE OVERCOME

322
00:13:28,000 --> 00:13:30,160
BUT RATHER SOMETHING THAT NIGHT

323
00:13:30,160 --> 00:13:32,920
NEED EXTRA ATTENTION OR EXTRA

324
00:13:32,920 --> 00:13:34,160
SUPPORT ESPECIALLY REPRODUCTIVE

325
00:13:34,160 --> 00:13:35,360
HEALTH AND PARENTING AND

326
00:13:35,360 --> 00:13:39,320
SEXUALITY AND ALL THOSE AREAS

327
00:13:39,320 --> 00:13:40,560
WHERE WE MIGHT NOT TALK ABOUT IT

328
00:13:40,560 --> 00:13:42,040
REGULARLY WITH OUR MAIN DOCTOR,

329
00:13:42,040 --> 00:13:43,280
IT IS REALLY IMPORTANT TO GO

330
00:13:43,280 --> 00:13:45,960
INTO IT WITH AN OPEN MIND AND

331
00:13:45,960 --> 00:13:48,040
THEN SAY WHAT KIND OF SUPPORT DO

332
00:13:48,040 --> 00:13:51,120
YOU NEED, IS THERE ANYTHING YOU

333
00:13:51,120 --> 00:13:53,080
NEED. THEN FILL OUT AN OPEN

334
00:13:53,080 --> 00:13:56,520
DIALOGUE AND JUST RECOGNIZING WE

335
00:13:56,520 --> 00:14:00,280
ARE ALL FULL, DIVERSE CAPABLE OF

336
00:14:00,280 --> 00:14:02,000
LOVE HUMAN BEINGS THAT NEED THE

337
00:14:02,000 --> 00:14:05,080
SAME THINGS THAT ANY OTHER

338
00:14:05,080 --> 00:14:07,720
PATIENT NEEDS.

339
00:14:07,720 --> 00:14:09,720
>>OBVIOUSLY YOUR PASSION
AND

340
00:14:09,720 --> 00:14:13,200
YOUR VOCATION IS THE MUSICAL

341
00:14:13,200 --> 00:14:14,480
ARTS AND INCLUSION FOR PEOPLE

342
00:14:14,480 --> 00:14:16,800
WITH DISABILITIES IN THE ARTS.

343
00:14:16,800 --> 00:14:19,640
NIH SHARES YOUR INTEREST IN THIS

344
00:14:19,640 --> 00:14:22,880
INTERSECTION OF HEALTH AND MUSIC

345
00:14:22,880 --> 00:14:31,000
IN PARTICULAR, IN 2017 NIH

346
00:14:31,000 --> 00:14:32,240
LAUNCHED THE PROGRAM AND THE

347
00:14:32,240 --> 00:14:33,840
NATIONAL CENTER FOR ARTS AND

348
00:14:33,840 --> 00:14:35,120
NATIONAL ORCHESTRA AND NATIONAL

349
00:14:35,120 --> 00:14:36,480
ENDOWMENT OF THE ARTS SO WE HAVE

350
00:14:36,480 --> 00:14:38,320
A LOT OF COMMONALITIES.  WE DID

351
00:14:38,320 --> 00:14:42,320
THAT BECAUSE WE WANTED TO

352
00:14:42,320 --> 00:14:44,640
UNDERSTAND HOW MUSIC IMPROVES

353
00:14:44,640 --> 00:14:46,880
HEALTH AND WELLNESS PARTICULARLY

354
00:14:46,880 --> 00:14:48,160
BRAIN HEALTH. CAN YOU TALK A

355
00:14:48,160 --> 00:14:49,440
LITTLE BIT ABOUT HOW MUSIC

356
00:14:49,440 --> 00:14:52,520
AFFECTED YOUR HEALTH?

357
00:14:52,520 --> 00:14:53,760
>>THAT IS AN INTERESTING

358
00:14:53,760 --> 00:14:54,760
QUESTION. OBVIOUSLY MUSIC HAS

359
00:14:54,760 --> 00:14:58,200
HAD A TREMENDOUSLY POSITIVE

360
00:14:58,200 --> 00:15:00,920
EFFECT ON MY WELLING WITH AND MY

361
00:15:00,920 --> 00:15:02,600
MENTAL HEALTH I THINK. BUT THE

362
00:15:02,600 --> 00:15:03,800
REALITY, THIS IS WHERE I WANT

363
00:15:03,800 --> 00:15:05,560
THE WORLD TO GET TO AT SOME

364
00:15:05,560 --> 00:15:07,360
POINT IS THAT IT ACTUALLY DOES

365
00:15:07,360 --> 00:15:11,120
THAT FOR EVERYBODY. SO

366
00:15:11,120 --> 00:15:12,680
DISABILITY OR NO DISABILITY,

367
00:15:12,680 --> 00:15:14,480
MUSIC IS JUST AN EXTREMELY

368
00:15:14,480 --> 00:15:16,240
VIBRANT AND IT TOUCHES US IN A

369
00:15:16,240 --> 00:15:18,120
WAY THAT VERY FEW OTHER THINGS

370
00:15:18,120 --> 00:15:21,120
DO. .  SO IT BOOSTS YOUR MENTAL

371
00:15:21,120 --> 00:15:25,400
HEALTH AND YOUR SEASO SENSE OF L

372
00:15:25,400 --> 00:15:27,280
BEING. WHEN I DEALT WITH ANXIETY

373
00:15:27,280 --> 00:15:30,400
OR DEPRESSION BEFORE I PLAY, I

374
00:15:30,400 --> 00:15:31,880
ALWAYS FEEL WORSE THAN AFTER I'M

375
00:15:31,880 --> 00:15:33,320
DONE. I ALWAYS FEEL BETTER. BUT

376
00:15:33,320 --> 00:15:36,240
I DON'T THINK OF DISABILITY AS

377
00:15:36,240 --> 00:15:38,240
SOME FORM OF LIKE SOME GROUP

378
00:15:38,240 --> 00:15:39,480
THAT NEEDS MUSIC MORE THAN

379
00:15:39,480 --> 00:15:41,440
ANOTHER GROUP. I REALLY FEEL

380
00:15:41,440 --> 00:15:43,200
THAT WE ALL BENEFIT FROM MUSIC,

381
00:15:43,200 --> 00:15:44,480
FOR THE SAME REASONS BECAUSE IT

382
00:15:44,480 --> 00:15:47,920
IS A UNIVERSAL THING. AND I'M

383
00:15:47,920 --> 00:15:50,080
GLAD WE ARE RECOGNIZING DISABLED

384
00:15:50,080 --> 00:15:52,720
PEOPLE ALSO NEED ACCESS TO MUSIC

385
00:15:52,720 --> 00:15:54,320
AND SUPPORT AND ENCOURAGEMENT

386
00:15:54,320 --> 00:15:56,080
AND ADAPTATION, THAT IS A REALLY

387
00:15:56,080 --> 00:15:58,760
BIG ONE, ENCOURAGING THE

388
00:15:58,760 --> 00:16:00,320
ADAPTATIONS FOR EXAMPLE THAT I

389
00:16:00,320 --> 00:16:01,280
HAVE BEEN ABLE TO FIGURE OUT

390
00:16:01,280 --> 00:16:02,840
WITH THE HELP OF TEACHERS, ALL

391
00:16:02,840 --> 00:16:05,240
THAT IS SUPER IMPORTANT. BUT IT

392
00:16:05,240 --> 00:16:07,920
IS BECAUSE MUSIC IS UNIVERSALLY

393
00:16:07,920 --> 00:16:09,760
GOOD FOR OUR WELL BEING, THAT IS

394
00:16:09,760 --> 00:16:11,560
IMPORTANT TO INCLUDE DISABILITY

395
00:16:11,560 --> 00:16:18,880
WHEN THINKING OF MUSIC. 

396
00:16:18,880 --> 00:16:21,080
>>I WANTED TO WRAP UP BY
SAYING

397
00:16:21,080 --> 00:16:22,640
THANK YOU FOR JOINING US TODAY

398
00:16:22,640 --> 00:16:24,280
AND SHARING YOUR PERSPECTIVE AND

399
00:16:24,280 --> 00:16:25,520
YOUR EXPERIENCE. MAYBE YOU CAN

400
00:16:25,520 --> 00:16:30,120
HELP THE REST OF US IMPROVE OUR

401
00:16:30,120 --> 00:16:32,240
HEALTH BY TREATING US TO SOME OF

402
00:16:32,240 --> 00:16:34,200
YOUR MUSICAL TALENTS ON THIS

403
00:16:34,200 --> 00:16:35,440
SECOND DAY OF THE WORKSHOP.

404
00:16:35,440 --> 00:16:36,600
>>AWESOME. I WOULD LOVE
THAT.

405
00:16:36,600 --> 00:16:40,880
THANK YOU FOR HAVING ME.  I'M

406
00:16:40,880 --> 00:16:42,920
GOING TO PERFORM TWO SONGS FOR

407
00:16:42,920 --> 00:16:45,360
YOU THIS MORNING. THE FIRST SONG

408
00:16:45,360 --> 00:16:47,800
IS CALLED WATCH THE WORLD

409
00:16:47,800 --> 00:16:49,640
UNFOLD. AND IT IS ABOUT NOT

410
00:16:49,640 --> 00:16:51,560
BEING SO HARD ON YOURSELF WHEN

411
00:16:51,560 --> 00:17:02,120
YOU MAKE A MISTAKE. HERE WE GO. 

412
00:18:19,960 --> 00:18:22,760
♪ PUSH IT UP, PUSH IT UP JUST

413
00:18:22,760 --> 00:18:26,800
LIKE YOU SEE, BUT YOU OVER QUITE

414
00:18:26,800 --> 00:18:29,680
A FLOWER, IF YOU -- LIKE A WEED,

415
00:18:29,680 --> 00:18:31,360
DRIVING THROUGH, DRIVING THROUGH

416
00:18:31,360 --> 00:18:34,160
KNOWING WHERE YOU ARE GOING BUT

417
00:18:34,160 --> 00:18:35,680
THE WINDSHIELD IS ALWAYS DIRTY

418
00:18:35,680 --> 00:18:39,520
AND YOU NEVER GET TO SEE, WHAT

419
00:18:39,520 --> 00:18:41,040
MAKES YOU THINK THAT YOU WILL

420
00:18:41,040 --> 00:18:42,320
EVER GET THERE ♪

421
00:18:42,320 --> 00:18:46,480
♪ WHAT MAKES YOU THINK YOU

422
00:18:46,480 --> 00:18:49,480
DESERVE TO KNOW, WHO ARE YOU

423
00:18:49,480 --> 00:18:52,280
REALLY, ARE YOU SO IMPORTANT,

424
00:18:52,280 --> 00:18:57,880
TAKE A LOOK AROUND AND WATCH THE

425
00:18:57,880 --> 00:19:02,240
WORLD UNFOLD, WATCH THE WORLD

426
00:19:02,240 --> 00:19:09,520
UNFOLD ♪ WATCH THE WORLD UNFOLD

427
00:19:09,520 --> 00:19:20,000
♪ WATCH THE WORLD UNFOLD ♪

428
00:19:33,840 --> 00:19:35,600
NEED ADVICE, NEED ADVICE, YOU

429
00:19:35,600 --> 00:19:40,960
HAVE NO CLUE WHAT YOU ARE DOING,

430
00:19:40,960 --> 00:19:43,960
AN IDENTITY UNHINGED, WHERE THE

431
00:19:43,960 --> 00:19:46,880
TURN, WHERE TO TURN, THERE'S SO

432
00:19:46,880 --> 00:19:49,320
MANY OPINIONS, AND THEY ARE ALL

433
00:19:49,320 --> 00:19:51,480
A LITTLE DIFFERENT AND THE

434
00:19:51,480 --> 00:19:54,800
OUTLETS GET YOU DOWN, WHAT MAKES

435
00:19:54,800 --> 00:19:56,640
YOU THINK THAT YOU WILL EVER GET

436
00:19:56,640 --> 00:20:01,320
THERE, WHAT MAKES YOU THINK YOU

437
00:20:01,320 --> 00:20:04,800
DESERVE TO KNOW, WHO ARE YOU

438
00:20:04,800 --> 00:20:09,280
REALLY, ARE YOU SO IMPORTANT,

439
00:20:09,280 --> 00:20:13,280
TAKE LOOK AROUND AND WATCH THE

440
00:20:13,280 --> 00:20:20,560
WORLD UNFOLD, WATCH THE WORLD

441
00:20:20,560 --> 00:20:31,120
UNFOLD WATCH THE WORLD UNFOLD I

442
00:20:32,800 --> 00:20:43,280
WATCH THE WORLD UNFOLD PUSH IT

443
00:21:07,400 --> 00:21:11,520
UP, PUSH IT UP THROUGH THE DIRT

444
00:21:11,520 --> 00:21:14,040
BUT YOU'RE NEVER QUITE A FLOWER

445
00:21:14,040 --> 00:21:20,680
YOU FEEL MORE JUST LIKE A WEED

446
00:21:20,680 --> 00:21:23,400
THERE YOU GO. THE NEXT SONG THAT

447
00:21:23,400 --> 00:21:24,800
I'M GOING TO PERFORM FOR YOU

448
00:21:24,800 --> 00:21:28,560
TODAY IS CALLED I WAIT. THIS IS

449
00:21:28,560 --> 00:21:30,440
A SONG I WROTE SPECIFICALLY

450
00:21:30,440 --> 00:21:33,560
ABOUT THE DISABILITY RIGHTS

451
00:21:33,560 --> 00:21:35,960
MOVEMENT IN AMERICA AND

452
00:21:35,960 --> 00:21:37,400
SPECIFICALLY AROUND MAKING SURE

453
00:21:37,400 --> 00:21:38,560
DISABLED PEOPLE ARE INCLUDED

454
00:21:38,560 --> 00:21:40,400
WHEN WE ARE DISCUSSING CHANGES

455
00:21:40,400 --> 00:21:43,120
TO HEALTHCARE AND OTHER PROGRAMS

456
00:21:43,120 --> 00:21:44,600
THAT SUPPORT US IN OUR COMMUNITY

457
00:21:44,600 --> 00:21:46,680
AND MAKE IT POSSIBLE FOR US TO

458
00:21:46,680 --> 00:21:48,960
ACHIEVE OUR FULL POTENTIAL AND

459
00:21:48,960 --> 00:21:51,560
TO CONTRIBUTE TO SOCIETY AND

460
00:21:51,560 --> 00:21:52,960
OFTEN I FEEL LIKE EVERYONE IS

461
00:21:52,960 --> 00:21:54,720
INCLUDED IN THESE DISCUSSIONS

462
00:21:54,720 --> 00:21:55,280
EXCEPT DISABLED PEOPLE

463
00:21:55,280 --> 00:21:57,320
THEMSELVES. SO THIS WAS A SONG

464
00:21:57,320 --> 00:21:59,600
KIND OF BORN OUT OF FRUSTRATION

465
00:21:59,600 --> 00:22:02,920
AND A CALL TO THE REST OF

466
00:22:02,920 --> 00:22:03,960
SOCIETY TO REMEMBER TO INCLUDE

467
00:22:03,960 --> 00:22:07,480
PEOPLE WITH DISABLES AT ALL

468
00:22:07,480 --> 00:22:09,520
LEVELS OF -- DISABLES AT ALL

469
00:22:09,520 --> 00:22:10,960
LEVELS OF LEADERSHIP AND ALL

470
00:22:10,960 --> 00:22:12,160
LEVELS OF PROCESS AND GIVE US A

471
00:22:12,160 --> 00:22:13,280
SEAT AT THE TABLE. THIS IS

472
00:22:13,280 --> 00:22:24,040
CALLED I WAIT.CAN YOU SEE ME,

473
00:24:02,440 --> 00:24:05,080
WAY IN THE BACK HERE, I HAVE

474
00:24:05,080 --> 00:24:06,760
BEEN WAITING, I HAVE BEEN

475
00:24:06,760 --> 00:24:08,640
WAITING IN LINE, IT'S BEEN A

476
00:24:08,640 --> 00:24:11,720
LONG TIME, TO GET NO SERVICE,

477
00:24:11,720 --> 00:24:19,480
STILL I'M HOPING I AM HOPING FOR

478
00:24:19,480 --> 00:24:22,320
A SIGHT, THAT WHEN ONE DAY

479
00:24:22,320 --> 00:24:25,360
THINGS WILL CHANGE AND WE CAN

480
00:24:25,360 --> 00:24:29,760
FINALLY TAKE THE PLACE THAT

481
00:24:29,760 --> 00:24:37,800
HISTORY WON'T FORGET US OR, THE

482
00:24:37,800 --> 00:24:44,960
PAIN AS A WHILE AND SO I'LL

483
00:24:44,960 --> 00:24:53,480
WAIT. 

484
00:24:53,480 --> 00:25:00,080
DID YOU KNOW THAT WHEN I GET

485
00:25:00,080 --> 00:25:01,520
ANGRY, I BREATHE FIRE, I CAN

486
00:25:01,520 --> 00:25:03,480
BURN THIS PLACE DOWN, YOU MAY

487
00:25:03,480 --> 00:25:09,000
NOT REALIZE ALL THIS MOMENT, I

488
00:25:09,000 --> 00:25:15,160
AM NOW JUST TAKE A LOOK AROUND,

489
00:25:15,160 --> 00:25:20,680
SO EVERYBODY KNOWS THAT YOU NEED

490
00:25:20,680 --> 00:25:26,320
A PLACE TO GO AND LIVING ISN'T

491
00:25:26,320 --> 00:25:31,120
EASY IF YOU INCINERATE YOUR HOME

492
00:25:31,120 --> 00:25:41,640
AND SO I STAY AND SO I STAY. I

493
00:25:51,160 --> 00:25:54,720
MAY SEEM AN DEGREE, SO PLEASE

494
00:25:54,720 --> 00:26:03,400
FORGIVE ME, BUT I AM STILL NOT

495
00:26:03,400 --> 00:26:07,800
FREE IN THIS SOCIETY, HOW LONG

496
00:26:07,800 --> 00:26:11,360
MUST WE KEEP FIGHTING FOR OUR

497
00:26:11,360 --> 00:26:21,880
RIGHT TO BE -- WE ARE ALL BETTER

498
00:26:22,480 --> 00:26:31,400
TO FOR GIVING -- FOR GIVING. SO

499
00:26:31,400 --> 00:26:33,560
IF YOU HEAR THEM MAKE CLAIMS OF

500
00:26:33,560 --> 00:26:36,600
PROGRESS, TAKE A GOOD LOOK AND

501
00:26:36,600 --> 00:26:39,880
SEE IF IT IS THERE, YOU NEED TO

502
00:26:39,880 --> 00:26:43,520
SEE NOW AT THE TABLE, TO PLEASE

503
00:26:43,520 --> 00:26:45,440
INVITE US OR DON'T PRETEND TO

504
00:26:45,440 --> 00:26:48,840
CARE.

505
00:26:48,840 --> 00:26:50,280
>>THANK YOU SO MUCH FOR
HAVING

506
00:26:50,280 --> 00:26:52,880
ME. HAVE A WONDERFUL REST OF THE

507
00:26:52,880 --> 00:26:57,080
DAY. AND TAKE CARE.  GAELYNN

508
00:26:57,080 --> 00:27:06,840
LEA. THANK YOU. THAT WAS REALLY

509
00:27:06,840 --> 00:27:10,560
MOVING. NOW WE WILL HAVE A

510
00:27:10,560 --> 00:27:12,240
KEYNOTE FROM JAIPREET VIRDI,

511
00:27:12,240 --> 00:27:13,640
ASSOCIATE PROFESSOR DEPARTMENT

512
00:27:13,640 --> 00:27:17,640
OF HISTORY AT THE UNIVERSITY OF

513
00:27:17,640 --> 00:27:18,680
DELAWARE WHOSE RESEARCH FOCUSES

514
00:27:18,680 --> 00:27:23,720
ON WAYS MEDICINE AND TECHNOLOGY

515
00:27:23,720 --> 00:27:25,480
IMPACT THE LIVED EXPERIENCES OF

516
00:27:25,480 --> 00:27:35,760
DISABLED PEOPLE.

517
00:27:36,920 --> 00:27:38,160
>>GOOD MORNING, EVERYONE.
BY

518
00:27:38,160 --> 00:27:40,880
WAY OF AUDIO DESCRIPTION I'M A

519
00:27:40,880 --> 00:27:44,440
WOMAN WITH SHORT CURLY BLACK

520
00:27:44,440 --> 00:27:45,800
HAIR AND WEARING A PINK HEAD

521
00:27:45,800 --> 00:27:49,360
BAND AND GLASSES. I AM SITTING

522
00:27:49,360 --> 00:27:51,800
IN FRONT OF WALLPAPERED BACK

523
00:27:51,800 --> 00:27:53,560
WALL WITH PINK AND PURPLE

524
00:27:53,560 --> 00:27:57,640
DESIGN. I'M FROM DELAWARE.

525
00:27:57,640 --> 00:27:59,240
I WANT TO APOLOGIZE IN ADVANCE

526
00:27:59,240 --> 00:28:01,400
FOR ANY TECHNICAL ISSUES THAT

527
00:28:01,400 --> 00:28:06,200
MIGHT OCCUR AND VERY ASSORTMENTY

528
00:28:06,200 --> 00:28:08,120
WEATHER HERE IN NEWWARK. THE

529
00:28:08,120 --> 00:28:10,720
TITLE OF MY TALK TODAY IS ON

530
00:28:10,720 --> 00:28:12,680
HEREDITARY DEAFNESS, A HISTORY

531
00:28:12,680 --> 00:28:17,040
OF EUGENICS AND ABLEISM. AND

532
00:28:17,040 --> 00:28:18,800
THIS TALK GOES ON TO MY SECOND

533
00:28:18,800 --> 00:28:25,000
BOOK MANUSCRIPT. WHICH IS TITLED

534
00:28:25,000 --> 00:28:26,720
THE DEAFNESS PROBLEM IN MODERN

535
00:28:26,720 --> 00:28:33,560
BRITAIN.  INCREASING CONCERN

536
00:28:33,560 --> 00:28:35,120
ABOUT HEREDITARY DEAFNESS IN THE

537
00:28:35,120 --> 00:28:37,000
LATE 19TH CENTURY SHAPED BY

538
00:28:37,000 --> 00:28:40,120
STATISTICS AND EUGENICS. AT THE

539
00:28:40,120 --> 00:28:42,320
CRUX OF HISTORY, IS THE

540
00:28:42,320 --> 00:28:46,240
PROFESSIONAL HISTORY OF ORAL

541
00:28:46,240 --> 00:28:47,720
SURGERY, NAMELY THE (INAUDIBLE)

542
00:28:47,720 --> 00:28:50,440
WHO SPECIALIZED IN DEAFNESS AND

543
00:28:50,440 --> 00:28:53,520
NEW DISEASES WHO REFER TO

544
00:28:53,520 --> 00:28:56,080
THEMSELVES AS ORAL SURGEONS AND

545
00:28:56,080 --> 00:29:00,240
BY CENTURY'S END AUDIOLOGISTS.

546
00:29:00,240 --> 00:29:02,640
WHILE PREDOMINANTLY APPROACH THE

547
00:29:02,640 --> 00:29:05,000
PEOPLE AND SUBJECTS FOR

548
00:29:05,000 --> 00:29:06,880
DEVELOPING THEORIES ON DISEASE

549
00:29:06,880 --> 00:29:10,320
CAUSATION AND HEARING LOSS, SOME

550
00:29:10,320 --> 00:29:11,200
ORAL SURGEONS CONSIDERED ACCESS

551
00:29:11,200 --> 00:29:13,400
TO LANGUAGE AND EDUCATION JUST

552
00:29:13,400 --> 00:29:17,000
AS ESSENTIAL AS MEDICAL CARE FOR

553
00:29:17,000 --> 00:29:18,800
A DEAF PERSON OVERALL WELL

554
00:29:18,800 --> 00:29:22,360
BEING. AS A RESULT THE EXTENDED

555
00:29:22,360 --> 00:29:24,480
PROFESSIONAL REACH BEYOND THE

556
00:29:24,480 --> 00:29:26,360
CLINICAL AND HOSPITAL SPACE

557
00:29:26,360 --> 00:29:28,480
TOWARD SCHOOLS FOR THE DEAF,

558
00:29:28,480 --> 00:29:31,280
POLICY AND LEGISLATION AND EVEN

559
00:29:31,280 --> 00:29:33,120
WITHIN BROADER CULTURAL

560
00:29:33,120 --> 00:29:33,840
CONVERSATIONS ABOUT SOCIAL

561
00:29:33,840 --> 00:29:37,760
WELFARE. THIS HAD SIGNIFICANT

562
00:29:37,760 --> 00:29:40,360
BEARING HOW MEDICAL AND SOCIAL

563
00:29:40,360 --> 00:29:42,800
ABLEISM AGAINST DEAF PEOPLE WERE

564
00:29:42,800 --> 00:29:44,440
ROOTED IN AN EXPECTATION FOR

565
00:29:44,440 --> 00:29:47,720
DEAF PEOPLE TO ADJUST TO HUMAN

566
00:29:47,720 --> 00:29:50,720
SOCIETY IF NOT BECOME HUMANS

567
00:29:50,720 --> 00:29:51,960
THEMSELVES AND PASS AS ABLE

568
00:29:51,960 --> 00:29:58,200
BODIED.  SO THIS ALSO CONSIDERS

569
00:29:58,200 --> 00:30:00,200
HOW DEAF PEOPLE IN CONTEXT OF

570
00:30:00,200 --> 00:30:02,440
DEAFNESS BOTH IN SUPPRESSION AND

571
00:30:02,440 --> 00:30:04,240
ACTIVE RESISTANCE TO

572
00:30:04,240 --> 00:30:06,800
INTERVENTION WHICH SHAPED BY THE

573
00:30:06,800 --> 00:30:09,320
WAY THESE AUDIOLOGISTS THOUGHT

574
00:30:09,320 --> 00:30:12,320
ABOUT THE -- AS MEDICAL EXPERTS

575
00:30:12,320 --> 00:30:14,040
WITHIN THE VARIOUS ROLES THEY

576
00:30:14,040 --> 00:30:19,720
CRAFTED FOR THEMSELVES.  TODAY

577
00:30:19,720 --> 00:30:24,240
I'M GOING TO BE CENTERING

578
00:30:24,240 --> 00:30:25,800
CONCERN ON HEREDITARY DEAFNESS.

579
00:30:25,800 --> 00:30:28,560
THESE CONCERNS WERE BY NO MEAN

580
00:30:28,560 --> 00:30:30,040
STANDARDS, NORMALLY UNIVERSALLY

581
00:30:30,040 --> 00:30:32,120
AGREED UPON BUT THEY PLAYED A

582
00:30:32,120 --> 00:30:35,600
TREMENDOUS ROLE IN FORMING

583
00:30:35,600 --> 00:30:37,160
EDUCATION THAT IS TRAINING BY

584
00:30:37,160 --> 00:30:40,480
SPEECH RATHER THAN SIGN, AS WELL

585
00:30:40,480 --> 00:30:42,800
AS SCHOOL, MEDICAL SURVEILLANCE,

586
00:30:42,800 --> 00:30:46,560
LEGISLATIVE ARGUMENTS ABOUT

587
00:30:46,560 --> 00:30:48,440
DEAF, GUIDELINES FOR TREATING

588
00:30:48,440 --> 00:30:51,000
DEAFNESS AND NEW DISEASE, AND ON

589
00:30:51,000 --> 00:30:54,600
THE EXTREME, CALM PAIN FOR

590
00:30:54,600 --> 00:30:56,960
STERILIZATION AS AN ECONOMIC

591
00:30:56,960 --> 00:31:01,440
STRATEGY ON SOCIAL WELFARE.

592
00:31:01,440 --> 00:31:02,880
MOREOVER, THE RHETORIC

593
00:31:02,880 --> 00:31:04,200
SURROUNDING HEREDITARY DEAFNESS

594
00:31:04,200 --> 00:31:06,960
WAS POWERFUL AND THUS CRUCIALLY

595
00:31:06,960 --> 00:31:08,440
SHAPING THE LIVES OF DEAF PEOPLE

596
00:31:08,440 --> 00:31:14,920
FOR GENERATIONS TO COME. NEXT

597
00:31:14,920 --> 00:31:18,120
SLIDE PLEASE.  JUST AS A

598
00:31:18,120 --> 00:31:19,040
STATISTICAL AUTHORITY. ON THE

599
00:31:19,040 --> 00:31:20,480
SLIDE IS A SUMMARY OF WHAT I

600
00:31:20,480 --> 00:31:24,200
WILL BE SPEAKING ABOUT. THE

601
00:31:24,200 --> 00:31:26,680
PROFESSIONAL EXPANSION OF ORAL

602
00:31:26,680 --> 00:31:28,480
SURGERY IN THE GROWING AUTHORITY

603
00:31:28,480 --> 00:31:34,960
OF AUDIOLOGIST OCCUR BETWEEN THE

604
00:31:34,960 --> 00:31:35,840
BROADER CONTEXT ABOUT HOW

605
00:31:35,840 --> 00:31:38,680
SCIENTIFIC MEDICINE CAN BE

606
00:31:38,680 --> 00:31:43,280
APPLIED TO SOLVING SOCIAL

607
00:31:43,280 --> 00:31:44,160
PROBLEMS INCLUDING HOW TO

608
00:31:44,160 --> 00:31:45,440
PROVIDE CARE AN SERVICES FOR

609
00:31:45,440 --> 00:31:49,760
DISABLED PEOPLE. NOW, IN

610
00:31:49,760 --> 00:31:51,600
OPTIMISM APPEARED SELF-EVIDENT

611
00:31:51,600 --> 00:31:54,800
IN A SOCIETY THAT WAS LIFE WITH

612
00:31:54,800 --> 00:31:55,720
PERCEPTION OF PARALLELISM MANY

613
00:31:55,720 --> 00:31:59,120
THE APPLIED SCIENCES, AND WITH

614
00:31:59,120 --> 00:32:00,920
EXPECTATION OF PROGRESS

615
00:32:00,920 --> 00:32:03,800
REQUIRING NEW AND PROMISING

616
00:32:03,800 --> 00:32:04,760
SOCIAL STRATEGY FOR

617
00:32:04,760 --> 00:32:07,240
UNDERSTANDING THE SOCIAL

618
00:32:07,240 --> 00:32:11,200
CALCULCALCULUS. SO ORAL SURGEONG

619
00:32:11,200 --> 00:32:13,800
COMPILED NARRATIVE CASE STUDIES

620
00:32:13,800 --> 00:32:16,240
FOR THEIR PATIENT AND MAINTAIN

621
00:32:16,240 --> 00:32:19,280
CASE STUDIES AND RECORDS WITHIN

622
00:32:19,280 --> 00:32:21,840
HOSPITAL AND THE DATA THEY

623
00:32:21,840 --> 00:32:23,560
CREATED LENT SUPPORT HOW THEY

624
00:32:23,560 --> 00:32:25,480
ASSESS THE PREVALENCE OF

625
00:32:25,480 --> 00:32:27,080
DEAFNESS AND DEAF PEOPLE WITHIN

626
00:32:27,080 --> 00:32:30,480
A GIVEN POPULATION. BUT ALSO HOW

627
00:32:30,480 --> 00:32:32,800
THEY INTERPRETED AND CATEGORIZED

628
00:32:32,800 --> 00:32:36,440
NEW DISEASE. ESPECIALLY HER REDS

629
00:32:36,440 --> 00:32:38,400
TEAR DEAFNESS THEY FOUND NOT

630
00:32:38,400 --> 00:32:40,080
ONLY DIFFICULT TO DIAGNOSE BUT

631
00:32:40,080 --> 00:32:50,560
ALSO TREAT OR CURE. MAINTAIN

632
00:32:56,720 --> 00:32:58,000
RECORDS OF HEALTH STATUS

633
00:32:58,000 --> 00:33:00,560
INCRUISING DETAILS ABOUT

634
00:33:00,560 --> 00:33:01,560
PROBABLE OR ACTUAL CAUSE OF

635
00:33:01,560 --> 00:33:05,800
DEAFNESS, THE RATE OF HEREDITARY

636
00:33:05,800 --> 00:33:07,240
DISEASE, AND PRESENCE OF DEAF

637
00:33:07,240 --> 00:33:08,560
MUTE PEOPLE AS THEY WERE DEFINED

638
00:33:08,560 --> 00:33:12,960
AT THE TIME, WITHIN A GIVEN

639
00:33:12,960 --> 00:33:14,440
POPULATION.  THESE CONCERNS

640
00:33:14,440 --> 00:33:15,960
ABOUT DEAFNESS BROADLY SPEAKING

641
00:33:15,960 --> 00:33:20,160
BECAME CRUCIAL ISSUES FOR

642
00:33:20,160 --> 00:33:21,560
STATISTICS ESPECIALLY ONE'S

643
00:33:21,560 --> 00:33:24,040
NOTION OF PREVENTION AND

644
00:33:24,040 --> 00:33:29,160
CIVILIAN BECAME INTERTWINED WITH

645
00:33:29,160 --> 00:33:31,400
GENESIS IDEOLOGY. FIRST DEVISED

646
00:33:31,400 --> 00:33:33,920
IN MANY 1883 BY THE BRITISH

647
00:33:33,920 --> 00:33:37,440
PARLIAMENT FRANCIS GOLDMAN,

648
00:33:37,440 --> 00:33:39,040
EUGENICS COMBINED TRENDS IN

649
00:33:39,040 --> 00:33:42,240
BIOSTATISTICS AND BIOMEDICINE TO

650
00:33:42,240 --> 00:33:47,200
OFFER NEW PROGRESSIVE TO SOLVE

651
00:33:47,200 --> 00:33:50,720
WAY TO IMPROVE THE INBORNE

652
00:33:50,720 --> 00:33:53,240
QUALITIES OF THROUGH MARRIAGE

653
00:33:53,240 --> 00:33:55,080
REGULATION AND PRO CREATION.

654
00:33:55,080 --> 00:33:58,640
EUGENICS BY MANY EXPERTS AT THE

655
00:33:58,640 --> 00:34:00,840
TIME WOULD HAIL AS A SOLUTION OF

656
00:34:00,840 --> 00:34:03,400
THE PRESENT PROBLEM IN BRITISH

657
00:34:03,400 --> 00:34:06,640
SOCIETY ISSUES LIKE

658
00:34:06,640 --> 00:34:10,400
URBANIZATION, DISEASE, POPULISM

659
00:34:10,400 --> 00:34:11,960
AND MORE (INAUDIBLE) IT WAS

660
00:34:11,960 --> 00:34:14,080
PERCEIVED AS A TOOL FOR

661
00:34:14,080 --> 00:34:15,960
AUGMENTING CLASS, GENDER, AND

662
00:34:15,960 --> 00:34:23,840
RACE BASED DIVISION. FOR MEDICAL

663
00:34:23,840 --> 00:34:26,800
AND POLICY MAKERS, EUGENICS

664
00:34:26,800 --> 00:34:28,800
OFFERED AN INTELLECTUAL

665
00:34:28,800 --> 00:34:30,360
RESPECTABILITY BY TRANSLATING

666
00:34:30,360 --> 00:34:33,560
THE STATISTICAL DATA ABOUT

667
00:34:33,560 --> 00:34:38,920
HEREDITARY POLICY. AND TO

668
00:34:38,920 --> 00:34:40,920
DECREASE ANY KIND OF ANXIETIES

669
00:34:40,920 --> 00:34:44,360
ABOUT THE DEGRADATION OF RACE.

670
00:34:44,360 --> 00:34:49,760
NEXT SLIDE PLEASE.  WHILE

671
00:34:49,760 --> 00:34:53,560
FINDING OF DEGENERATION TENDING

672
00:34:53,560 --> 00:34:55,560
TO BE ANECDOTAL AND DESCRIPTIVE

673
00:34:55,560 --> 00:34:57,680
RATHER THAN STATISTICAL THIS

674
00:34:57,680 --> 00:34:59,800
FIELD OF SOCIAL DEGENERATION

675
00:34:59,800 --> 00:35:01,240
INFLUENCED PUBLIC HEALTH

676
00:35:01,240 --> 00:35:03,440
POLICIES AND LEGISLATION INFORM

677
00:35:03,440 --> 00:35:08,680
REFORM. CONDITIONAL DEAF MUTE

678
00:35:08,680 --> 00:35:10,040
PEOPLE WHOM HADOCKMENTED

679
00:35:10,040 --> 00:35:12,880
GENERATION OF HER REDS TEAR

680
00:35:12,880 --> 00:35:14,320
DEAFNESSESS SPECIALLY THROUGH

681
00:35:14,320 --> 00:35:16,320
MARRIAGES BETWEEN DEAF PEOPLE,

682
00:35:16,320 --> 00:35:21,160
OFTEN FELL INTO THIS CATEGORY. 

683
00:35:21,160 --> 00:35:24,600
DEAF EDUCATORS RAISED THE

684
00:35:24,600 --> 00:35:26,480
QUESTION, WAS HEREDITARY DEAF

685
00:35:26,480 --> 00:35:28,520
MUTISM A SINGLE VARIATION THAT

686
00:35:28,520 --> 00:35:31,400
WAS EASILY TRANSMITTED THROUGH

687
00:35:31,400 --> 00:35:34,760
DEAF FAMILIES WHO INTERMARRY WAS

688
00:35:34,760 --> 00:35:36,520
CONDITIONAL DEAFNESS A

689
00:35:36,520 --> 00:35:38,320
HEREDITARY TRAIT? AND WOULD

690
00:35:38,320 --> 00:35:41,000
MARRIAGES BETWEEN HEREDITARY

691
00:35:41,000 --> 00:35:43,360
DEAF PEOPLE AND HEARING PARTNER

692
00:35:43,360 --> 00:35:45,680
FURTHER SPREAD DEAFNESS IN

693
00:35:45,680 --> 00:35:48,600
QUOTE, POLLUTE THE NATIONAL

694
00:35:48,600 --> 00:35:53,760
STOCK? SO BETWEEN 1890 AND 1930,

695
00:35:53,760 --> 00:35:57,880
THESE EUGENICS POLICIES CROSSED

696
00:35:57,880 --> 00:36:01,520
INTO TWO INSTITUTIONS SOME

697
00:36:01,520 --> 00:36:03,360
EXPERTS CATALOG THE DIFFERENT

698
00:36:03,360 --> 00:36:06,600
KIND OF CLASSIFICATION OF

699
00:36:06,600 --> 00:36:11,280
DEAFNESS THAT THEY TRIED TO

700
00:36:11,280 --> 00:36:13,120
(INAUDIBLE) ALL OF THEM

701
00:36:13,120 --> 00:36:15,560
PEDAGOGUE SPEECH RATHER THAN --

702
00:36:15,560 --> 00:36:18,000
WAS TO THEN WAY TO GIVE TEACHERS

703
00:36:18,000 --> 00:36:21,800
THE RESPONSIBILITY AND ABILITY

704
00:36:21,800 --> 00:36:24,520
TO INSTILL SPOKEN LANGUAGE IN

705
00:36:24,520 --> 00:36:25,720
DEAF PEOPLE, QUOTE, TO RETURN

706
00:36:25,720 --> 00:36:27,720
THEM TO HUMAN SOCIETY AND THUS

707
00:36:27,720 --> 00:36:32,240
HUMAN EVOLUTION. AT ONE DOCTOR

708
00:36:32,240 --> 00:36:35,600
ASSERTED, THIS ISSUE OF TEACHING

709
00:36:35,600 --> 00:36:40,600
DEAF CHILDREN SPEECH WAS QUOTE

710
00:36:40,600 --> 00:36:43,440
EUGENIC ONE. SO ORALISM THEN

711
00:36:43,440 --> 00:36:46,160
ESPECIALLY WHEN EMERGE WITH

712
00:36:46,160 --> 00:36:47,040
CLINICAL DOCTRINE WAS PRESENTED

713
00:36:47,040 --> 00:36:49,920
AS A METHOD FOR PROVIDING DEAF

714
00:36:49,920 --> 00:36:52,360
CHILDREN WITH RESPECTABILITY,

715
00:36:52,360 --> 00:36:56,440
LITERACY AND MANNERISM HAS BEEN

716
00:36:56,440 --> 00:36:58,160
AFFECTED FOR HOW THEY CAN

717
00:36:58,160 --> 00:36:58,880
PARTICIPATE IN SOCIAL

718
00:36:58,880 --> 00:37:02,320
STIMULATION. ESPECIALLY WHEN

719
00:37:02,320 --> 00:37:05,000
PROVIDED WITH STATE PROVISION.  

720
00:37:05,000 --> 00:37:09,760
NEXT SLIDE PLEASE.  EDUCATION IS

721
00:37:09,760 --> 00:37:11,600
THE ONLY REMEDY IS THE SITE

722
00:37:11,600 --> 00:37:14,360
WHERE DIFFERENT EXPERTS MEET TO

723
00:37:14,360 --> 00:37:18,440
APPLY EUGENICS IDEAS FOR CONCERN

724
00:37:18,440 --> 00:37:20,000
OF DEAF AND HEARING A POINT

725
00:37:20,000 --> 00:37:23,440
STRESSED BY ONE STRU INSTRUCTORR

726
00:37:23,440 --> 00:37:25,640
THE DEAF. EDUCATION IS THE ONLY

727
00:37:25,640 --> 00:37:29,080
REMEDY THAT CAN IN ANY WAY

728
00:37:29,080 --> 00:37:31,000
MITIGATE THE ILLS WHICH MAN KIND

729
00:37:31,000 --> 00:37:32,560
ARE LIABLE TO TRANSMIT TO THEIR

730
00:37:32,560 --> 00:37:39,880
DESCENDENTS. SO THIS EUGENICS

731
00:37:39,880 --> 00:37:40,680
STRATIFY DEAF CHILDREN TO

732
00:37:40,680 --> 00:37:44,000
QUESTION OF HEREDITARY BECAME

733
00:37:44,000 --> 00:37:45,800
PART OF LARGER PROCESS OF

734
00:37:45,800 --> 00:37:47,600
NORMALIZING AND STANDARDIZING

735
00:37:47,600 --> 00:37:50,000
DEAF EDUCATION AND TIED TO

736
00:37:50,000 --> 00:37:51,600
PROGRESSIVE GOAL OF HEALTH

737
00:37:51,600 --> 00:37:54,640
PREVENTION AND EFFICIENCY. IN

738
00:37:54,640 --> 00:37:57,880
OTHER WORDS, THE ULTIMATE GOAL

739
00:37:57,880 --> 00:38:03,080
BECAME TO REDUCE IF NOT

740
00:38:03,080 --> 00:38:05,880
ELIMINATE MER RED TEAR THAT

741
00:38:05,880 --> 00:38:06,880
OTHERWISE SPREAD UNCHECKED

742
00:38:06,880 --> 00:38:09,320
THROUGH THE BRITISH POPULATION. 

743
00:38:09,320 --> 00:38:11,160
SO WHILE ALL THESE BRITISH

744
00:38:11,160 --> 00:38:13,760
LAWYERS WERE ENTANGLED WITH

745
00:38:13,760 --> 00:38:15,160
ISSUES OF DEAF EDUCATION THE

746
00:38:15,160 --> 00:38:16,920
LEVEL OF ENGAGEMENT STARTED TO

747
00:38:16,920 --> 00:38:20,000
INCREASE STEADILY DURING THE

748
00:38:20,000 --> 00:38:21,360
1880s AS THEY FACE GREATER

749
00:38:21,360 --> 00:38:23,000
RESPONSIBILITY TO PROTECTING

750
00:38:23,000 --> 00:38:25,440
HEALTH AND WELFARE OF SCHOOL

751
00:38:25,440 --> 00:38:28,600
CHILDREN INCLUDING THROUGH EARLY

752
00:38:28,600 --> 00:38:29,680
PREVENTION PROGRAM TO HALT

753
00:38:29,680 --> 00:38:35,240
PROGRESSIVE DEAFNESS. THERE WAS

754
00:38:35,240 --> 00:38:36,640
SEVERAL KEY EVENTS THAT OCCURRED

755
00:38:36,640 --> 00:38:38,640
WITHIN THE LATE 19TH CENTURY

756
00:38:38,640 --> 00:38:41,920
THAT WOULD ALSO DRASTICALLY

757
00:38:41,920 --> 00:38:44,440
TRANSFORM THESE ROLES.  FIRST

758
00:38:44,440 --> 00:38:45,920
WITH RESULT OF SECOND

759
00:38:45,920 --> 00:38:46,680
INTERNATIONAL CONGRESS ON

760
00:38:46,680 --> 00:38:49,360
EDUCATION OF THE DEAF, THAT TOOK

761
00:38:49,360 --> 00:38:54,880
PLACE IN MILAN IN 1880. THIS WAS

762
00:38:54,880 --> 00:38:56,680
A MULTI-NATIONAL HE WANT THAT

763
00:38:56,680 --> 00:39:00,840
BROUGHT TOGETHER 164 EDUCATORS,

764
00:39:00,840 --> 00:39:03,960
PHYSICIANS AND LAY PERSON AND

765
00:39:03,960 --> 00:39:06,160
DISCUSSION INCLUSIVELY FOCUSED

766
00:39:06,160 --> 00:39:08,160
ON METHODS OF -- FOR EDGE CASING

767
00:39:08,160 --> 00:39:12,520
DEAF PEOPLE. ONLY ONE DEAF

768
00:39:12,520 --> 00:39:14,240
DELEGATE ATTENDED AND THE

769
00:39:14,240 --> 00:39:15,840
CONVENTION WAS MOSTLY MANAGED BY

770
00:39:15,840 --> 00:39:19,560
PROMOTERS OF ORALISM. BUT AT THE

771
00:39:19,560 --> 00:39:22,080
END THE CONVENTION HAD EIGHT

772
00:39:22,080 --> 00:39:24,240
RESOLUTIONS THAT DECLARED SPEECH

773
00:39:24,240 --> 00:39:26,880
WAS MUCH MORE PREFERABLE AND

774
00:39:26,880 --> 00:39:29,200
EFFECTIVE THAN SIGN LANGUAGE FOR

775
00:39:29,200 --> 00:39:30,560
ASSIMILATING DEAF PEOPLE INTO

776
00:39:30,560 --> 00:39:33,680
SOCIETY.  AND THEY CLAIM THE

777
00:39:33,680 --> 00:39:37,840
RESULT OF CONVENTION CLAIM QUOTE

778
00:39:37,840 --> 00:39:41,320
ORAL METHOD ARE TO BE PREFERRED

779
00:39:41,320 --> 00:39:43,240
FOR EDUCATION AND INSTRUCTION OF

780
00:39:43,240 --> 00:39:47,800
THE DEAF AND DUMB. HOWEVER, WE

781
00:39:47,800 --> 00:39:48,840
COULD IT WAS NOT ALWAYS

782
00:39:48,840 --> 00:39:51,920
UNIVERSAL. NOR DID IT COMPLETELY

783
00:39:51,920 --> 00:39:53,720
ERADICATE SIGN LANGUAGE FROM

784
00:39:53,720 --> 00:39:55,160
SCHOOLS FOR DEAF CHILDREN. IN

785
00:39:55,160 --> 00:39:56,840
FACT, MANY BRITISH SCHOOLS

786
00:39:56,840 --> 00:39:58,320
CONTINUE WITH THE COMBINED

787
00:39:58,320 --> 00:40:00,120
SYSTEM OF TEACHING THAT MERGED

788
00:40:00,120 --> 00:40:05,040
SIGN LANGUAGE WITH SPEECH

789
00:40:05,040 --> 00:40:09,520
TRAINING. THE SECOND KEY EVENT

790
00:40:09,520 --> 00:40:11,840
THAT OCCURRED WERE RESULT OF

791
00:40:11,840 --> 00:40:15,080
SEVERAL SURVEYS TAKEN BY HEAD

792
00:40:15,080 --> 00:40:17,080
MASTERS AT DEAF SCHOOL AND

793
00:40:17,080 --> 00:40:18,120
VARIOUS CHARITABLE SOCIETY

794
00:40:18,120 --> 00:40:19,520
TRYING TO DETERMINE THE SOCIAL

795
00:40:19,520 --> 00:40:23,120
PROBLEM OF BLINDNESS AND

796
00:40:23,120 --> 00:40:26,920
DEAFNESS WITH AIM OF FORMULATING

797
00:40:26,920 --> 00:40:29,320
MORE BENEFICIAL POLICY. THESE

798
00:40:29,320 --> 00:40:33,200
SURVEYS PROVIDED ESSENTIAL DATA

799
00:40:33,200 --> 00:40:34,600
FOR PRESSING SATE ACTION

800
00:40:34,600 --> 00:40:39,240
ESPECIALLY WHEN COUPLED WITH THE

801
00:40:39,240 --> 00:40:42,400
UK 1861 WHICH REVEALED THAT DEAF

802
00:40:42,400 --> 00:40:43,520
AND BLIND CHILDREN ACTUALLY NOT

803
00:40:43,520 --> 00:40:46,960
RECEIVING ADEQUATE EDUCATION AND

804
00:40:46,960 --> 00:40:49,400
MANY SCHOOLS FOR BLIND AND/OR

805
00:40:49,400 --> 00:40:52,280
DEAF CHILDREN WERE ACTUALLY FALL

806
00:40:52,280 --> 00:40:55,880
BELOW THE REQUIRED STATE LEVELS

807
00:40:55,880 --> 00:40:58,320
FOR EDUCATION. THE RESULT OF THE

808
00:40:58,320 --> 00:41:03,280
SURVEY LED TO THE THIRD KEY

809
00:41:03,280 --> 00:41:04,760
EVENT WHICH WAS FORMULATION OF

810
00:41:04,760 --> 00:41:08,800
THE ROYAL COMMISSION TO CONSIDER

811
00:41:08,800 --> 00:41:11,800
EXTENDING THE 1870 EDUCATION ACT

812
00:41:11,800 --> 00:41:13,840
WHICH ESTABLISHING COMPULSORY

813
00:41:13,840 --> 00:41:17,000
SCHOOLING FOR CHILDREN AGES 5-12

814
00:41:17,000 --> 00:41:21,440
BUT THE ACT PREVIOUSLY DID NOT

815
00:41:21,440 --> 00:41:22,600
INCLUDE (INAUDIBLE) SPECIAL

816
00:41:22,600 --> 00:41:25,080
INSTRUCTION FOR BLIND DEAF

817
00:41:25,080 --> 00:41:26,720
EPILEPTIC OR DISABLED CHILDREN.

818
00:41:26,720 --> 00:41:28,880
SO MANY SCHOOL BOARD COULD

819
00:41:28,880 --> 00:41:29,800
REFUSE ADMISSION OF THESE

820
00:41:29,800 --> 00:41:35,560
CHILDREN. THE RESULTING -- FROM

821
00:41:35,560 --> 00:41:38,400
THE ROYAL COMMISSION LED TO THE

822
00:41:38,400 --> 00:41:40,400
FORMATION OF THE ELEMENTARY

823
00:41:40,400 --> 00:41:42,320
EDUCATION BLIND AND DEAF ACT

824
00:41:42,320 --> 00:41:45,560
BEING PASSIONED IN 1893 TO

825
00:41:45,560 --> 00:41:47,600
PROVIDE EVERY BLIND, DEAF AND

826
00:41:47,600 --> 00:41:51,800
DISABLED CHILD THE RIGHT TO

827
00:41:51,800 --> 00:41:53,480
EDUCATION PAID BY LOCAL AND

828
00:41:53,480 --> 00:41:55,680
GRANTS FROM THE GOVERNMENT. BY

829
00:41:55,680 --> 00:41:56,960
1907 THE ENTIRE COST OF

830
00:41:56,960 --> 00:41:58,760
EDUCATION FOR DISABLED CHILDREN

831
00:41:58,760 --> 00:42:02,720
WERE COVERED BY TAX PAYERS. SO

832
00:42:02,720 --> 00:42:05,600
WHAT DOES IT MEAN FOR DEAF

833
00:42:05,600 --> 00:42:08,080
CHILDREN AS WELL AS (INAUDIBLE)

834
00:42:08,080 --> 00:42:09,720
EXTENDING THEIR AUTHORITY FROM

835
00:42:09,720 --> 00:42:13,280
BEYOND THE CLINICAL SPACE?

836
00:42:13,280 --> 00:42:15,120
MULTI-STATE AND BUREAUCRATIC

837
00:42:15,120 --> 00:42:16,560
CONTROL ACTUALLY GAVE GREATER

838
00:42:16,560 --> 00:42:20,600
AUTHORITY TO ALL DOCTORS -- ORAL

839
00:42:20,600 --> 00:42:21,840
DOCTORS AND (INAUDIBLE) FOR

840
00:42:21,840 --> 00:42:23,640
EDUCATION DEPARTMENTS TO

841
00:42:23,640 --> 00:42:25,920
INCORPORATE EXTENSIVE MEDICAL

842
00:42:25,920 --> 00:42:29,360
POLICY AND TO BOTH ASSESS AND

843
00:42:29,360 --> 00:42:30,600
WHERE POSSIBLE TREAT DEAF SCHOOL

844
00:42:30,600 --> 00:42:32,720
CHILDREN. I ALSO MEANT DEAFNESS

845
00:42:32,720 --> 00:42:36,320
BECAME FORMALLY CLASSIFIED AS A

846
00:42:36,320 --> 00:42:37,960
MEDICAL CONDITION REQUIRING

847
00:42:37,960 --> 00:42:40,800
CERTIFICATION BIOMEDICAL -- IN

848
00:42:40,800 --> 00:42:45,800
ORDER TO RECEIVE SCHOOLING. AND

849
00:42:45,800 --> 00:42:48,720
EDUCATION ALL OF THEM BECAME

850
00:42:48,720 --> 00:42:52,320
IDENTIFIED WITH NATIONALITY, A

851
00:42:52,320 --> 00:42:57,960
WAY OF PROGRESS THROUGH REASON

852
00:42:57,960 --> 00:43:00,480
AND SIGN. WITHIN ALL THESE

853
00:43:00,480 --> 00:43:02,040
TRANSFORMATION, THE ISSUE OF

854
00:43:02,040 --> 00:43:03,160
HEREDITARY DEAFNESS AND

855
00:43:03,160 --> 00:43:08,120
ESPECIALLY HEREDITARY DEAF

856
00:43:08,120 --> 00:43:10,320
MUTISM, APPEAR RESISTANT TO

857
00:43:10,320 --> 00:43:11,680
THESE EFFORTS AND THEREFORE

858
00:43:11,680 --> 00:43:13,920
REQUIRE GREATER ALLIANCE BETWEEN

859
00:43:13,920 --> 00:43:17,360
DEAF EDUCATOR AND AUDIOLOGISTS

860
00:43:17,360 --> 00:43:21,800
TO FIGURE HOW TO REDUCE THE

861
00:43:21,800 --> 00:43:23,600
GROWING CONDITION OF DEAF

862
00:43:23,600 --> 00:43:24,880
VARIETY THAT SEEM TO BE

863
00:43:24,880 --> 00:43:25,840
UNRESPONSIVE TO MEDICAL

864
00:43:25,840 --> 00:43:31,480
INTERVENTION. NEXT SLIDE PLEASE 

865
00:43:31,480 --> 00:43:35,280
THE TRACKING INTERMARRIAGE, ONE

866
00:43:35,280 --> 00:43:38,480
CONCERN THAT WAS RAISED BY THE

867
00:43:38,480 --> 00:43:39,720
ROYAL COMMISSION WAS THIS ISSUE

868
00:43:39,720 --> 00:43:43,760
OF HEREDITARY DEAF MUTISM THAT

869
00:43:43,760 --> 00:43:46,560
WAS ARISING WHEN DEAF PEOPLE

870
00:43:46,560 --> 00:43:47,960
MARRIED OTHER DEAF PEOPLE AND

871
00:43:47,960 --> 00:43:49,920
HAD DEAF CHILDREN. THE

872
00:43:49,920 --> 00:43:52,200
INCREASING RATES OF THESE

873
00:43:52,200 --> 00:43:55,040
MARRIAGES WERE OUTLINED IN

874
00:43:55,040 --> 00:43:56,840
CENSUS OF COURSE AS WELL AS

875
00:43:56,840 --> 00:43:59,040
STATISTICAL STUDIES BY DEAF

876
00:43:59,040 --> 00:44:02,040
FAMILIES CONDUCTED BY

877
00:44:02,040 --> 00:44:04,000
AUDIOLOGISTS AS WELL AS

878
00:44:04,000 --> 00:44:05,880
EDUCATORS AT DEAF SCHOOLS. SO

879
00:44:05,880 --> 00:44:07,800
THESE HE CANS PERT STARTED TO

880
00:44:07,800 --> 00:44:09,760
PLACE STOCK ON INCREASING

881
00:44:09,760 --> 00:44:12,080
HEREDITARY TRANSMISSION OF

882
00:44:12,080 --> 00:44:13,880
DEAFNESS AS EVIDENCE FOR THE

883
00:44:13,880 --> 00:44:18,600
IMPORTANCE OF ORALISM. THE --

884
00:44:18,600 --> 00:44:19,840
BECAME IF DEAF MUTE CHILDREN

885
00:44:19,840 --> 00:44:22,520
WERE LEFT TO THEIR OWN GUISES,

886
00:44:22,520 --> 00:44:24,280
PREDOMINANTLY SIGNING SCHOOL,

887
00:44:24,280 --> 00:44:26,000
THEN THEY WERE MORE LIKELY TO

888
00:44:26,000 --> 00:44:29,080
FORM A COMMUNITY OF LIKE MINDED

889
00:44:29,080 --> 00:44:31,720
SIGNERS WHO ARE UNWILLING IF NOT

890
00:44:31,720 --> 00:44:33,680
CAPABLE OF LEARNING SPEECH AND

891
00:44:33,680 --> 00:44:36,320
HENCE ASSIMILATING INTO THE

892
00:44:36,320 --> 00:44:39,600
BROADER HEARING SOCIETY. NEXT

893
00:44:39,600 --> 00:44:43,400
SLIDE PLEASE. THIS SITUATION WAS

894
00:44:43,400 --> 00:44:45,600
ESPECIALLY CONCERNING IN THE

895
00:44:45,600 --> 00:44:48,520
UNITED STATES AS A METHOD FOR

896
00:44:48,520 --> 00:44:50,600
COMPARISON TO THE UK AS OUTLINED

897
00:44:50,600 --> 00:44:54,320
IN THE WORLD COMMISSION REPORT.

898
00:44:54,320 --> 00:44:55,400
ROAL COMMISSION REPORTS. IT IS

899
00:44:55,400 --> 00:44:57,400
SAID THAT BEFORE EDUCATION WAS

900
00:44:57,400 --> 00:45:00,640
IMPARTED TO DEAF-MUTES, AND

901
00:45:00,640 --> 00:45:01,960
BEFORE THEY WERE CONGREGATED IN

902
00:45:01,960 --> 00:45:04,240
VARIOUS EDUCATIONAL

903
00:45:04,240 --> 00:45:05,560
INSTITUTIONS, HARDLY ANY

904
00:45:05,560 --> 00:45:10,560
INTERMARRIED. IN JAILNY

905
00:45:10,560 --> 00:45:14,080
SWITZERLAND AND ITALY THE --

906
00:45:14,080 --> 00:45:17,760
GERMANY, THE REPORT OF THE ROAL

907
00:45:17,760 --> 00:45:19,320
COMMISSION, PLACES WHERE --

908
00:45:19,320 --> 00:45:21,080
INCIDENCE OF DEAF INTERMARRIAGE

909
00:45:21,080 --> 00:45:22,760
WERE FAR MUCH LOWER THAN IN THE

910
00:45:22,760 --> 00:45:26,520
UNITED STATES OR ENGLAND. AND

911
00:45:26,520 --> 00:45:29,280
ALSO EDUCATORS AT INSTITUTIONS

912
00:45:29,280 --> 00:45:31,720
HAD PREVIOUSLY TABULATED

913
00:45:31,720 --> 00:45:34,000
INCIDENCES OF DEAF

914
00:45:34,000 --> 00:45:35,760
INTERMARRIAGES EUGENICS STARTED

915
00:45:35,760 --> 00:45:39,680
TO RAISE ADDITIONAL FEARS ABOUT

916
00:45:39,680 --> 00:45:43,160
HEREDITY, REPRODUCTION AND

917
00:45:43,160 --> 00:45:45,520
DEGENERACY. THE (INAUDIBLE)

918
00:45:45,520 --> 00:45:49,920
NOTES THAT WHILE EUGENICS WAS

919
00:45:49,920 --> 00:45:56,720
NOT -- SCIENTIFIC WHAT DID --

920
00:45:56,720 --> 00:45:58,400
WHAT LOU'S INTERNATIONAL NETWORK

921
00:45:58,400 --> 00:46:01,160
OF CORRESPONDING SCHOLARS AND

922
00:46:01,160 --> 00:46:03,160
SCIENTISTS WHO ARE INTERESTED IN

923
00:46:03,160 --> 00:46:04,760
IN THIS IDEA OF THE TRANSMISSION

924
00:46:04,760 --> 00:46:07,880
OF HEREDITARY TRAITS AND THE

925
00:46:07,880 --> 00:46:09,720
IMPACT IT WOULD HAVE ON DEAF AND

926
00:46:09,720 --> 00:46:16,760
DISABLED PEOPLE. SO MANY DEAF

927
00:46:16,760 --> 00:46:19,440
SCHOOLS AND EXPERTS STARTED

928
00:46:19,440 --> 00:46:21,160
TABULATING DATA ON EXISTENCE OF

929
00:46:21,160 --> 00:46:23,680
LARGE FAMILIES WHERE GENERATIONS

930
00:46:23,680 --> 00:46:26,520
OF DEAFNESS AND IN ORDER TO

931
00:46:26,520 --> 00:46:28,920
UNDERSTAND HOW MANY OF THE

932
00:46:28,920 --> 00:46:32,440
FAMILY WERE ALSO CHILDREN INTO

933
00:46:32,440 --> 00:46:35,280
THAT SCHOOL. THE LONDON -- FOR

934
00:46:35,280 --> 00:46:36,680
THE DEAF AND DUMB, ONE OF THE

935
00:46:36,680 --> 00:46:40,040
FIRST PUBLIC SCHOOLS IN BRITAIN.

936
00:46:40,040 --> 00:46:44,640
FOR INSTANCE, IN IN 1859 THE

937
00:46:44,640 --> 00:46:45,920
PUBLISHED LIST OF 23 POOR AND

938
00:46:45,920 --> 00:46:47,840
WORKING CLASS FAMILIES WHO HAD

939
00:46:47,840 --> 00:46:53,480
CHILDREN IN THE INSTITUTION.

940
00:46:53,480 --> 00:46:57,200
AMONG 160 CHILDREN WITHIN THIS

941
00:46:57,200 --> 00:47:04,600
23 FAMILIES, 105 WERE DEAF. THE

942
00:47:04,600 --> 00:47:06,840
COMMISSION WERE TAKING STOCK OF

943
00:47:06,840 --> 00:47:09,040
ALL THESE REPORTS, THEY

944
00:47:09,040 --> 00:47:11,080
PRINCIPALLY DREW TESTIMONY FROM

945
00:47:11,080 --> 00:47:15,720
ALEXANDER GRAHAM BELL. NEXT

946
00:47:15,720 --> 00:47:22,400
SLIDE PLEASE.  THANK YOU.

947
00:47:22,400 --> 00:47:25,960
EARLIER IN 1883, SIX YEARS

948
00:47:25,960 --> 00:47:28,560
BEFORE THE ROAL COMMISSION

949
00:47:28,560 --> 00:47:30,160
PUBLISHED A REPORT, AT A MEETING

950
00:47:30,160 --> 00:47:33,160
OF NATIONAL ACADEMY OF

951
00:47:33,160 --> 00:47:34,880
SCIENTISTS, BELL HAD RAISED THE

952
00:47:34,880 --> 00:47:38,920
ISSUE OF QUOTE, THE FACT THAT IN

953
00:47:38,920 --> 00:47:41,440
THIS COUNTRY DEAF MUTES MARRIED

954
00:47:41,440 --> 00:47:43,720
DEAF MUTES. THE RESULTING

955
00:47:43,720 --> 00:47:46,560
PUBLICATION OF HIS ARGUMENT

956
00:47:46,560 --> 00:47:49,720
TITLED MEMORY UPON FORMATION OF

957
00:47:49,720 --> 00:47:52,120
DEAF VARIETY OF THE HUMAN RACE

958
00:47:52,120 --> 00:47:53,840
COMBINED EMPIRICAL DATA FROM

959
00:47:53,840 --> 00:47:56,160
AMERICAN RESIDENTIAL SCHOOLS FOR

960
00:47:56,160 --> 00:48:00,520
THE DEAF WITH STATISTICS AND

961
00:48:00,520 --> 00:48:02,880
PROBABILITY TO CONCLUDE THAT

962
00:48:02,880 --> 00:48:04,160
QUOTE, A DEAF VARIETY, WOULD

963
00:48:04,160 --> 00:48:06,680
BECOME INCREASINGLY POSSIBLE AND

964
00:48:06,680 --> 00:48:09,680
THAT THERE WAS NO SIGN OF THE

965
00:48:09,680 --> 00:48:12,760
TREND SLOWING DOWN. SO WHAT WAS

966
00:48:12,760 --> 00:48:14,120
THIS DEAF VARIETY? IT WAS A

967
00:48:14,120 --> 00:48:17,080
GROUP OF DEAF PEOPLE WITH A

968
00:48:17,080 --> 00:48:19,880
CULTURAL IDENTITY IN LANGUAGE OF

969
00:48:19,880 --> 00:48:21,680
THEIR OWN THAT WOULD SEPARATE

970
00:48:21,680 --> 00:48:25,840
FROM THE BROADER HUMAN

971
00:48:25,840 --> 00:48:31,760
POPULATION. BELL ARGUED THAT AS

972
00:48:31,760 --> 00:48:32,880
A -- FROM BROADER SOCIETY, IT

973
00:48:32,880 --> 00:48:35,560
WOULD BE MUCH MORE DIFFICULT TO

974
00:48:35,560 --> 00:48:38,920
APPLY ANY EUGENICS MEASURES TO

975
00:48:38,920 --> 00:48:40,160
RESTRICT THE SEGREGATION OF DEAF

976
00:48:40,160 --> 00:48:45,640
PEOPLE. SO HE ENCOURAGE DEAF

977
00:48:45,640 --> 00:48:47,760
PEOPLE TO SOCIALIZE IN HUMAN

978
00:48:47,760 --> 00:48:50,160
COMMUNITY, ADVOCATED SPEECH OVER

979
00:48:50,160 --> 00:48:52,920
SIGN LANGUAGE, BUT HE ARGUED

980
00:48:52,920 --> 00:48:55,960
THAT ANY FORM OF RESTRICTIONS OR

981
00:48:55,960 --> 00:48:57,800
LEGAL BANNED ON DEAF

982
00:48:57,800 --> 00:48:59,600
INTERMARRIAGE WOULD ACTUALLY

983
00:48:59,600 --> 00:49:02,640
PROMOTE IMMORAL BEHAVIOR. AND

984
00:49:02,640 --> 00:49:04,160
THEREFORE, POSSIBLY EVEN FURTHER

985
00:49:04,160 --> 00:49:08,480
INCREASE THE RATES OF HEREDITARY

986
00:49:08,480 --> 00:49:09,520
DEAFNESS. BELL CLAIMED

987
00:49:09,520 --> 00:49:10,760
PREVENTIVE MEASURES WERE MORE

988
00:49:10,760 --> 00:49:14,200
LIKELY TO SUCCEED.  PREVENTION

989
00:49:14,200 --> 00:49:17,800
WAS ESPECIALLY SUCCESSFUL WHEN

990
00:49:17,800 --> 00:49:19,840
THEY WERE DISGUISED AS

991
00:49:19,840 --> 00:49:22,080
EDUCATIONAL REFORM. WHAT WAS THE

992
00:49:22,080 --> 00:49:26,600
PREVENTION METHODS? THE

993
00:49:26,600 --> 00:49:28,120
RESIDENTIAL SCHOOL, FORD BY

994
00:49:28,120 --> 00:49:30,920
USING SIGN LANGUAGE IN THE

995
00:49:30,920 --> 00:49:33,720
CLASSROOM. PROHIBIT DEAF ADULTS

996
00:49:33,720 --> 00:49:36,240
FROM P BECOMING TEACHERS OF DEAF

997
00:49:36,240 --> 00:49:39,920
CHILDREN. AND PROVIDE MEDICAL

998
00:49:39,920 --> 00:49:45,120
EXPERTS TO EXAMINE AND TREAT ANY

999
00:49:45,120 --> 00:49:47,280
NEW DISEASE OR HEARING ISSUES AS

1000
00:49:47,280 --> 00:49:53,160
EARLY AS INFANCFANCY. SO BELL AD

1001
00:49:53,160 --> 00:49:55,480
THAT COLLECTIVELY THIS REFORM

1002
00:49:55,480 --> 00:49:57,400
WOULD ENCOURAGE DEAF PEOPLE POO

1003
00:49:57,400 --> 00:49:59,120
FOCUS ON DEVELOPING THEIR SPEECH

1004
00:49:59,120 --> 00:50:01,760
SKILLS AND MAKE THEM

1005
00:50:01,760 --> 00:50:05,000
FIGURATIVELY LESS DEAF. AND HIS

1006
00:50:05,000 --> 00:50:09,680
PERSPECTIVE ACTUALLY LED TO THE

1007
00:50:09,680 --> 00:50:10,800
MEMOIR BECAUSE AN OBJECT STUDY

1008
00:50:10,800 --> 00:50:12,360
ON DEAF HISTORY AND DREW THE

1009
00:50:12,360 --> 00:50:15,720
WRATH OF O DEAF PEOPLE WHO

1010
00:50:15,720 --> 00:50:17,880
CONSIDERED BELL EUGENICS VIEW AS

1011
00:50:17,880 --> 00:50:21,760
DAMAGING TO DEAF COMMUNITIES.  

1012
00:50:21,760 --> 00:50:25,240
BUT BELL REPEATED IN NEWSPAPERS,

1013
00:50:25,240 --> 00:50:27,000
MAGAZINES, AND SPEAKING

1014
00:50:27,000 --> 00:50:28,600
WORLDWIDE, IT WAS CONSIDERED TO

1015
00:50:28,600 --> 00:50:32,600
BE CUTTING EDGE RESEARCH AT THE

1016
00:50:32,600 --> 00:50:36,200
TIME AND BELL DREW PLENTY OF --

1017
00:50:36,200 --> 00:50:38,640
FROM STATISTICAL STUDY AND HE

1018
00:50:38,640 --> 00:50:42,240
VIEWED DEAF PEOPLE AS AN IDEAL

1019
00:50:42,240 --> 00:50:45,560
SUBJECT FOR TRACING HOW

1020
00:50:45,560 --> 00:50:47,640
CONTINUOUS SELECTION ACTUALLY

1021
00:50:47,640 --> 00:50:51,680
INFLUENCE EVOLUTION. SO WHAT

1022
00:50:51,680 --> 00:50:53,280
THIS SCIENTIFIC STAND IS NOT

1023
00:50:53,280 --> 00:50:54,440
ACTUALLY NEW TO PEOPLE WHO WORK

1024
00:50:54,440 --> 00:50:57,120
WITH DEAF CHILDREN AND DEAF

1025
00:50:57,120 --> 00:51:00,960
COMMUNITIES, BELL REPLICATION AS

1026
00:51:00,960 --> 00:51:02,280
SCIENTIST AS HE DREW WIDER

1027
00:51:02,280 --> 00:51:03,840
PUBLIC ATTENTION TO THE

1028
00:51:03,840 --> 00:51:05,560
CONCERNING AND WORRYING ISSUE OF

1029
00:51:05,560 --> 00:51:09,400
HEREDITARY DEAFNESS. SO FOR

1030
00:51:09,400 --> 00:51:14,200
EXAMPLE, HE STUDIED 757 CASES OF

1031
00:51:14,200 --> 00:51:17,040
INTERMARRIAGE BETWEEN DEAF MUTE

1032
00:51:17,040 --> 00:51:23,280
PEOPLE. AND FOUND THAT 1,514

1033
00:51:23,280 --> 00:51:27,680
PEOPLE WHO INTERMARRY, 1400 WERE

1034
00:51:27,680 --> 00:51:30,760
DEAF MUTE, 5% OF WHOM WENT ON TO

1035
00:51:30,760 --> 00:51:34,000
MARRY HEARING PEOPLE, WHILE 95%

1036
00:51:34,000 --> 00:51:36,360
MARRIED OTHER DEAF PEOPLE AND

1037
00:51:36,360 --> 00:51:41,760
HAD THEIR OWN DEAF CHILDREN. THE

1038
00:51:41,760 --> 00:51:44,520
ROAL COMMISSIONERS CONSIDERED

1039
00:51:44,520 --> 00:51:47,680
BELL'S STUDY AND SUPPORTING

1040
00:51:47,680 --> 00:51:49,640
RESEARCH AS SUFFICIENT EVIDENCE

1041
00:51:49,640 --> 00:51:53,000
TO PROVE THAT THE REAL DANGER OF

1042
00:51:53,000 --> 00:51:55,960
INCREASE CONGENITAL DEAFNESS,

1043
00:51:55,960 --> 00:51:58,360
EVEN WHILE DEAF PEOPLE ALSO

1044
00:51:58,360 --> 00:52:00,360
TESTIFIED THAT THIS CONCERN

1045
00:52:00,360 --> 00:52:02,200
WASN'T AS WORRYING AS BELL MADE

1046
00:52:02,200 --> 00:52:06,920
IT OUT TO BE. SO THE ROAL

1047
00:52:06,920 --> 00:52:08,160
COMMISSIONERS RECOMMENDED THAT

1048
00:52:08,160 --> 00:52:09,640
INTERMARRIAGES OF HEREDITARY

1049
00:52:09,640 --> 00:52:11,560
DEAF MUTE PEOPLE SHOULD BE

1050
00:52:11,560 --> 00:52:16,320
STRONGLY DISCOURAGED. THE

1051
00:52:16,320 --> 00:52:18,640
RESOLUTION WAS ALSO PART OF

1052
00:52:18,640 --> 00:52:20,240
THESE BROADER CHANGES IN WHICH

1053
00:52:20,240 --> 00:52:22,520
THE ISSUE OF WHO PAYS FOR DEAF

1054
00:52:22,520 --> 00:52:24,680
EDUCATION AS WELL AS EDUCATION

1055
00:52:24,680 --> 00:52:27,680
FOR BLIND AND PHYSICALLY

1056
00:52:27,680 --> 00:52:30,440
DISABLED CHILDREN, BECOME

1057
00:52:30,440 --> 00:52:32,360
INCREASING COST WILL BE BURDEN

1058
00:52:32,360 --> 00:52:35,320
BY TAX PAYERS OR THE STATE.  

1059
00:52:35,320 --> 00:52:40,320
NEXT SLIDE PLEASE.  SO FOR

1060
00:52:40,320 --> 00:52:42,360
EXAMPLE, RECORDS FROM THE LONDON

1061
00:52:42,360 --> 00:52:44,680
COUNTY COUNCIL, ONE OF THE

1062
00:52:44,680 --> 00:52:46,520
EDUCATIONAL BRANCHES INDICATED

1063
00:52:46,520 --> 00:52:49,840
THAT THE COST OF EDUCATING A

1064
00:52:49,840 --> 00:52:56,440
DEAF CHILD AMO AAMOUNTED TO 31

1065
00:52:56,440 --> 00:52:58,560
POUNDS PER YEAR COMPARED TO 5

1066
00:52:58,560 --> 00:53:00,360
POUNDS SPENT ON ORDINARY CHILD. 

1067
00:53:00,360 --> 00:53:02,560
AND THIS REPORT ARGUED IF THE

1068
00:53:02,560 --> 00:53:03,680
NUMBERS OF DEAF CHILDREN

1069
00:53:03,680 --> 00:53:06,520
CONTINUES TO INCREASE,

1070
00:53:06,520 --> 00:53:08,720
ESPECIALLY THROUGH HEREDITARY

1071
00:53:08,720 --> 00:53:11,640
DEAFNESS, TRACKED THROUGH DEAF

1072
00:53:11,640 --> 00:53:13,680
INTERMARRIAGES, AND FORWARD

1073
00:53:13,680 --> 00:53:17,760
MEDICAL INTERVENTION WAS LARGELY

1074
00:53:17,760 --> 00:53:20,120
INEFFECTIVE, THEN EUGENICS

1075
00:53:20,120 --> 00:53:21,960
TEXTBOOK ASSERTED, DEAFNESS WILL

1076
00:53:21,960 --> 00:53:23,400
BECOME A VERY EXPENSIVE

1077
00:53:23,400 --> 00:53:24,640
CONDITION FOR ANY COMMUNITY TO

1078
00:53:24,640 --> 00:53:27,840
MAINTAIN. EVEN IF THE CHILDREN

1079
00:53:27,840 --> 00:53:29,800
WHEN INDICATED ARE ABLE TO

1080
00:53:29,800 --> 00:53:33,120
SUPPORT THEMSELVES. BUT NOT ALL

1081
00:53:33,120 --> 00:53:34,440
EXPERTS AGREED WITH THIS

1082
00:53:34,440 --> 00:53:37,240
PERSPECTIVE. NOR DID THEY AGREE

1083
00:53:37,240 --> 00:53:39,320
THE THREAT OF DEAF HEREDITARY

1084
00:53:39,320 --> 00:53:42,520
DEAFNESS WOULD REALLY DEEPLY

1085
00:53:42,520 --> 00:53:46,240
CONCERNING. AUTHOR HENRY BATHER

1086
00:53:46,240 --> 00:53:48,000
THE SECRETARY OF THE ROAL

1087
00:53:48,000 --> 00:53:50,920
ASSOCIATION IN AID OF THE DEAF

1088
00:53:50,920 --> 00:53:52,720
AND DUMB, WAS ONE OF TWO DEAF

1089
00:53:52,720 --> 00:53:54,520
SIGNERS INVITED TO TESTIFY IN

1090
00:53:54,520 --> 00:53:58,200
FRONT OF THE ROAL COMMISSION. HE

1091
00:53:58,200 --> 00:54:00,840
STRONGLY OPPOSED BELL'S FINDINGS

1092
00:54:00,840 --> 00:54:04,040
AND DESCRIPTION AS DID AMERICAN

1093
00:54:04,040 --> 00:54:08,560
EDUCATOR EDWARD GALLAUDET. 

1094
00:54:08,560 --> 00:54:10,160
HOWEVER, BECAUSE BELL TIES THIS

1095
00:54:10,160 --> 00:54:13,000
IDEA OF CONVECTION OF DEAFNESS

1096
00:54:13,000 --> 00:54:14,720
-- CONVENTION OF DEAFNESS TO THE

1097
00:54:14,720 --> 00:54:16,560
HEALTH OF THE NATION, STATISTICS

1098
00:54:16,560 --> 00:54:18,760
PROVIDED BY DEAF PEOPLE,

1099
00:54:18,760 --> 00:54:20,840
SKEPTICAL EDUCATORS AS WELL AS

1100
00:54:20,840 --> 00:54:21,720
COMMISSIONERS FOR THE DEAF,

1101
00:54:21,720 --> 00:54:24,960
STARTED TO INCLUSIVELY QUESTION

1102
00:54:24,960 --> 00:54:27,640
BELL'S EVIDENCE AND THEY SHOWED

1103
00:54:27,640 --> 00:54:29,080
THAT RATHER THAN DEAF

1104
00:54:29,080 --> 00:54:31,520
INTERMARRIAGES PRODUCING HIGHER

1105
00:54:31,520 --> 00:54:32,320
RATES OF DEAF CHILDREN, THEY

1106
00:54:32,320 --> 00:54:33,440
ACTUALLY FOUND THE OPPOSITE WAS

1107
00:54:33,440 --> 00:54:37,240
TRUE. IN THAT DEAF PEOPLE

1108
00:54:37,240 --> 00:54:47,720
MARRYING DEAF PEOPLE ONLY LED 

1109
00:54:47,720 --> 00:54:48,960
INTERMITTENTLY LED TO DEAF

1110
00:54:48,960 --> 00:54:51,120
CHILDREN. MEANWHILE FOR

1111
00:54:51,120 --> 00:54:52,920
AUDIOLOGISTS THIS BROADER

1112
00:54:52,920 --> 00:54:54,840
DISCOURSE ABOUT STATISTICS AND

1113
00:54:54,840 --> 00:54:57,560
DEAF EDUCATION PROVIDED AMPLE

1114
00:54:57,560 --> 00:54:59,440
OPPORTUNITIES TO DEMONSTRATE THE

1115
00:54:59,440 --> 00:55:02,000
IMPORTANCE OF THE PROFESSION.

1116
00:55:02,000 --> 00:55:03,800
AND THE ROLES STARTED TO BECOME

1117
00:55:03,800 --> 00:55:07,000
MORE PROFOUND AFTER THE 1893

1118
00:55:07,000 --> 00:55:10,320
ELEMENTARY EDUCATION ACT AND THE

1119
00:55:10,320 --> 00:55:12,000
LATER PROVISION WHICH COMPELLED

1120
00:55:12,000 --> 00:55:14,200
SCHOOL BOARDS TO PROVIDE FOR

1121
00:55:14,200 --> 00:55:15,760
BLIND DEAF EPILEPTIC AND

1122
00:55:15,760 --> 00:55:18,880
DISABLED CHILDREN.  NEXT SLIDE

1123
00:55:18,880 --> 00:55:27,400
PLEASE.  MEDICAL EXPERTS

1124
00:55:27,400 --> 00:55:32,880
CONTROLLED THE PROCESS QUASI EWE

1125
00:55:32,880 --> 00:55:35,000
GYPSY APPROACH FOR MANAGING

1126
00:55:35,000 --> 00:55:36,840
DISABILITY AND STATE FUNDED FOR

1127
00:55:36,840 --> 00:55:40,320
EDUCATION. THE OTOLOGIST

1128
00:55:40,320 --> 00:55:44,040
ASSESSED THE DEAFNESS AND WHERE

1129
00:55:44,040 --> 00:55:46,520
POSSIBLE RECOMMENDED MEDICAL OR

1130
00:55:46,520 --> 00:55:48,520
SURGICAL INTERVENTION, TO REMOVE

1131
00:55:48,520 --> 00:55:52,720
THE TONSILS AND ADENOIDS.  AND

1132
00:55:52,720 --> 00:55:55,640
THE AIM TO CORRECT THE MEDICAL

1133
00:55:55,640 --> 00:55:59,680
ISSUE,PRIOR TO A DEAF CHILD

1134
00:55:59,680 --> 00:56:01,360
BEING STUDIED FOR. ESPECIALLY

1135
00:56:01,360 --> 00:56:03,320
LOOKED FOR SYMPTOMS OF

1136
00:56:03,320 --> 00:56:06,600
HEREDITARY DEAF MUTISM TO

1137
00:56:06,600 --> 00:56:10,120
DISCOURAGE INTERMARRYING. SO

1138
00:56:10,120 --> 00:56:14,600
MANY OTOLOGISTS GENERALLY AGREE

1139
00:56:14,600 --> 00:56:16,880
PREVENTION AND TREATMENT OF EAR

1140
00:56:16,880 --> 00:56:19,280
ISSUES FOR ESSENTIAL FOR

1141
00:56:19,280 --> 00:56:21,000
IDENTIFYING POCKETS OF DEAFNESS

1142
00:56:21,000 --> 00:56:22,440
FOR INTERVENTION. SOME TOOK THE

1143
00:56:22,440 --> 00:56:25,920
MORE EXTREME VIEW. ONE OF THE

1144
00:56:25,920 --> 00:56:31,440
MOST OUTSPOKEN OTOLOGISTS WAS

1145
00:56:31,440 --> 00:56:34,480
(INDISCERNIBLE). IN HIS ROLE AS

1146
00:56:34,480 --> 00:56:36,440
A ORAL SURGEON AND MEDICAL

1147
00:56:36,440 --> 00:56:40,320
INSPECTOR TO THE LONDON COUNTY

1148
00:56:40,320 --> 00:56:42,880
SCHOOL, HE HAD AMPLE OPPORTUNITY

1149
00:56:42,880 --> 00:56:44,200
TO JUDGE THE WORKING OF THE

1150
00:56:44,200 --> 00:56:48,880
SYSTEM OF DEAF EDUCATION. AND HE

1151
00:56:48,880 --> 00:56:51,080
ARGUED THAT THE ENTIRE SYSTEM OF

1152
00:56:51,080 --> 00:56:54,080
DEAF EDUCATION NEEDED TO BE

1153
00:56:54,080 --> 00:56:56,360
REORGANIZED BECAUSE TOO MANY

1154
00:56:56,360 --> 00:56:59,440
DEAF CHILDREN WERE BEING PLACED

1155
00:56:59,440 --> 00:57:01,600
IN DEAF SCHOOL WITHOUT PROPER

1156
00:57:01,600 --> 00:57:04,960
INTERVENTION BY MEDICAL EXPERT

1157
00:57:04,960 --> 00:57:07,640
WHEN THEY COULD OTHERWISE BE

1158
00:57:07,640 --> 00:57:10,520
BENEFITING FROM SPEECH TRAINING

1159
00:57:10,520 --> 00:57:17,800
AND MAKING (INAUDIBLE). NEXT

1160
00:57:17,800 --> 00:57:20,240
SLIDE. UNDER THE SYSTEM HE

1161
00:57:20,240 --> 00:57:21,600
CLAIMED ALL CHILDREN AT THE LOP

1162
00:57:21,600 --> 00:57:24,200
DON COUNTY COUNCIL SCHOOL NEED

1163
00:57:24,200 --> 00:57:26,160
TO HAVE A HEARING PRELIMINARY

1164
00:57:26,160 --> 00:57:27,440
EXAM IN THE FIRST YEAR BY A

1165
00:57:27,440 --> 00:57:30,280
SCHOOL DOCTOR OR NURSE UNDER HIS

1166
00:57:30,280 --> 00:57:31,640
SUPERVISION AND THEN CHILDREN

1167
00:57:31,640 --> 00:57:33,520
WHO WERE PRELIMINARY DIAGNOSED

1168
00:57:33,520 --> 00:57:36,320
OR SUSPECTED TO BE DEAF, WERE

1169
00:57:36,320 --> 00:57:39,120
RECOMMENDED TO HIM OR THE

1170
00:57:39,120 --> 00:57:42,160
MEDICAL DEPARTMENT FOR

1171
00:57:42,160 --> 00:57:44,240
TREATMENT. WHAT HIS METHOD

1172
00:57:44,240 --> 00:57:46,520
CREATED WITH MERGING WHAT HE

1173
00:57:46,520 --> 00:57:48,680
CALL EFFECTIVE EDUCATION AND

1174
00:57:48,680 --> 00:57:51,800
EFFECTIVE TREATMENT, IN ORDER TO

1175
00:57:51,800 --> 00:57:53,120
DRASTICALLY DIMINISH A NUMBER OF

1176
00:57:53,120 --> 00:57:54,880
DEAF CHILDREN WITH HEREDITARY

1177
00:57:54,880 --> 00:57:56,760
DEAFNESS GOING INTO SCHOOLS

1178
00:57:56,760 --> 00:58:04,160
WITHOUT PROPER EXAMINATION

1179
00:58:04,160 --> 00:58:05,760
HOWEVER, IT WASN'T DIMINISHING

1180
00:58:05,760 --> 00:58:07,520
THE VALUE OF DEAF EDUCATION OR

1181
00:58:07,520 --> 00:58:13,400
EDUCATION FOR DEAF CHILDREN. HE

1182
00:58:13,400 --> 00:58:15,040
CLAIMED THAT QUOTE HEARING IS

1183
00:58:15,040 --> 00:58:16,240
THE MOST IMPORTANT EDUCATION

1184
00:58:16,240 --> 00:58:17,200
SENSE BECAUSE IT CHANNELS

1185
00:58:17,200 --> 00:58:19,080
THROUGH WHICH THE CHILD OBTAINS

1186
00:58:19,080 --> 00:58:22,040
THE SPEECH AND LANGUAGE WHICH HE

1187
00:58:22,040 --> 00:58:24,800
CANNOT THINK AND REASON CLEARLY 

1188
00:58:24,800 --> 00:58:26,240
SO HE CLAIMED THAT MEDICAL

1189
00:58:26,240 --> 00:58:29,080
FAILURE TO PROPERLY ASSESS DEAF

1190
00:58:29,080 --> 00:58:31,280
AND DEAF MUTE CHILDREN FOR

1191
00:58:31,280 --> 00:58:32,880
LANGUAGE AND SPEECH ACTUALLY LED

1192
00:58:32,880 --> 00:58:37,200
TO INCREASE COST THAT COULD BE

1193
00:58:37,200 --> 00:58:40,040
BURDENED BY THE TAXPAYER. THE

1194
00:58:40,040 --> 00:58:41,640
RECENT STATISTICS SHOW THAT THE

1195
00:58:41,640 --> 00:58:43,920
COST OF EDUCATION, PER HEAD, OF

1196
00:58:43,920 --> 00:58:48,160
THE DEAF-MUTES IN THE LONDON

1197
00:58:48,160 --> 00:58:50,360
COUNTY COUNCIL SCHOOLINGS IS 31

1198
00:58:50,360 --> 00:58:51,800
POUNDS PER ANNUM, THIS INCLUDES

1199
00:58:51,800 --> 00:58:53,720
BOTH RESIDENTIAL AND DAY

1200
00:58:53,720 --> 00:58:55,600
SCHOLARS. AND HE GOES ON TO

1201
00:58:55,600 --> 00:58:59,120
EXPLAIN THAT IF THEY DEDUCT THE

1202
00:58:59,120 --> 00:59:02,760
RESIDENTIAL SCHOOL THE COST OF

1203
00:59:02,760 --> 00:59:04,240
23 POUNDS PER YEAR. IN

1204
00:59:04,240 --> 00:59:06,560
COMPARISON QUOTE, THE EXPEN OF

1205
00:59:06,560 --> 00:59:09,240
EDUCATING THE NORMAL CHILD IN

1206
00:59:09,240 --> 00:59:10,720
ELEMENTARY SCHOOLS IS 5 POUNDS

1207
00:59:10,720 --> 00:59:14,360
PER ANNPER ANNUM. SO HIS ARGUMEE

1208
00:59:14,360 --> 00:59:17,760
ARE PAYING SO MUCH MORE FOR DEAF

1209
00:59:17,760 --> 00:59:18,760
EDUCATION WHEN WE COULD ACTUALLY

1210
00:59:18,760 --> 00:59:21,120
DEVISE MEDICAL PROVISION TO

1211
00:59:21,120 --> 00:59:27,480
REDUCE THAT COST.  HE WAS A EWE

1212
00:59:27,480 --> 00:59:32,760
GENERAL CYST AND HE CLAIMED --

1213
00:59:32,760 --> 00:59:34,960
EUGENICS, AND HE CLAIMED IT WAS

1214
00:59:34,960 --> 00:59:38,000
POSSIBLE TO PREVENT HEREDITARY

1215
00:59:38,000 --> 00:59:40,600
DEAFNESS HE SUGGESTED THAT

1216
00:59:40,600 --> 00:59:41,200
STERILIZATION WAS ANOTHER

1217
00:59:41,200 --> 00:59:46,600
OPTION. AND THAT HAS

1218
00:59:46,600 --> 00:59:50,320
FUNCTIONALLY FOR EUGENICS

1219
00:59:50,320 --> 00:59:51,520
REACHED ORALIZATION POSSIBLE

1220
00:59:51,520 --> 00:59:55,360
WITH MINIMUM OF DANGER. SO JUST

1221
00:59:55,360 --> 00:59:57,000
TO WRAP UP, WHAT IS THE HISTORY

1222
00:59:57,000 --> 01:00:00,000
OF STATISTICAL STUDY CONCERNED

1223
01:00:00,000 --> 01:00:01,600
ABOUT HEREDITARY DEAFNESS TELL

1224
01:00:01,600 --> 01:00:03,760
US? FOR ONE THING, IT

1225
01:00:03,760 --> 01:00:05,080
UNDERSCORES HOW EUGENICS DOES HE

1226
01:00:05,080 --> 01:00:07,560
HAVELY INFORMS MUCH OF MODERN

1227
01:00:07,560 --> 01:00:10,200
MEDICINE AND DEAF EDUCATION, AND

1228
01:00:10,200 --> 01:00:13,880
THAT STATISTICAL DATA THAT WAS

1229
01:00:13,880 --> 01:00:16,960
COMPILED -- WHAT WOULD CALL

1230
01:00:16,960 --> 01:00:19,120
HEREDITARY DEAFNESS WAS NOT

1231
01:00:19,120 --> 01:00:20,720
ADEQUATELY MANAGED THROUGH

1232
01:00:20,720 --> 01:00:22,960
EDUCATION, MEDICAL SURVEILLANCE

1233
01:00:22,960 --> 01:00:26,440
AS WELL AS GOVERNMENT AND STATE

1234
01:00:26,440 --> 01:00:29,280
INTERVENTION. AND SECONDLY,

1235
01:00:29,280 --> 01:00:31,880
DESPITE THIS RICH HISTORY OF

1236
01:00:31,880 --> 01:00:33,400
SIGN LANGUAGE THAT COMMUNITIES

1237
01:00:33,400 --> 01:00:36,600
AND DEAF CULTURE, DEAFNESS WAS

1238
01:00:36,600 --> 01:00:38,560
CREATED AS A MEDICAL PROBLEM

1239
01:00:38,560 --> 01:00:41,880
THAT REQUIRED A FIX. AND THIS

1240
01:00:41,880 --> 01:00:43,360
ABLEISM HAS IMPACT AND STILL

1241
01:00:43,360 --> 01:00:46,080
CONTINUES TO IMPACT HOW DEAF

1242
01:00:46,080 --> 01:00:49,040
PEOPLE ACCESS MEDICAL CARE OR

1243
01:00:49,040 --> 01:00:52,120
LACK THEREOF, ESPECIALLY WHEN NO

1244
01:00:52,120 --> 01:00:53,520
COME BY ACCOMMODATIONS ARE

1245
01:00:53,520 --> 01:00:55,880
PROVIDED FOR COMMUNICATION. AND

1246
01:00:55,880 --> 01:00:59,480
THE INCREASINGLY INEQUITIES AND

1247
01:00:59,480 --> 01:01:00,720
BARRIERSES DEAF PEOPLE FACE AND

1248
01:01:00,720 --> 01:01:04,120
CONTINUE TO FACE, ARE FURTHER

1249
01:01:04,120 --> 01:01:05,880
COMPLICATED BY THE EUGENICS

1250
01:01:05,880 --> 01:01:09,520
AGENDA OF ELIMINATING DEAFNESS

1251
01:01:09,520 --> 01:01:13,200
OR VERY LEAST PREVENTING A DEAF

1252
01:01:13,200 --> 01:01:17,000
VARIETY AS BELL CAUTIONED WHO

1253
01:01:17,000 --> 01:01:19,960
MADE YOU WILL ULTIMATE GOAL OF

1254
01:01:19,960 --> 01:01:22,480
MEDICAL SCIENCE. FAR FROM BEING

1255
01:01:22,480 --> 01:01:25,640
THE DISSTOPIAN SCENARIO, THE

1256
01:01:25,640 --> 01:01:27,160
EUGENICS PERSPECTIVE IS STILL

1257
01:01:27,160 --> 01:01:30,080
VERY MUCH EMBEDDED IN SOCIETY

1258
01:01:30,080 --> 01:01:35,280
THAT PROMOTES DEAFNESS COURSE AS

1259
01:01:35,280 --> 01:01:37,760
A SOLUTION TO CELEBRATE AS A

1260
01:01:37,760 --> 01:01:45,400
TRIUMPH OF SCIENCE. THANK YOU.

1261
01:01:45,400 --> 01:01:50,800
>>THANK YOU SO MUCH MS.
VIRDI.

1262
01:01:50,800 --> 01:01:52,080
I BELIEVE WE HAVE TIME FOR A FEW

1263
01:01:52,080 --> 01:01:54,720
QUESTIONS AND I ENCOURAGE OUR

1264
01:01:54,720 --> 01:01:55,800
AUDIENCE TO HAVE -- THAT YOU

1265
01:01:55,800 --> 01:01:57,160
TYPE ANY QUESTIONS THAT THEY CAN

1266
01:01:57,160 --> 01:02:02,120
IN THE Q&A BOX. SO ONE
QUESTION

1267
01:02:02,120 --> 01:02:08,960
TO START OFF IS DID BELL'S STUDY

1268
01:02:08,960 --> 01:02:10,560
MAINLY EFFECT ENGLISH SPEAKING

1269
01:02:10,560 --> 01:02:12,080
HUMANITIES OR WAS THAT

1270
01:02:12,080 --> 01:02:13,080
PERCEPTION EXTENDED ACROSS

1271
01:02:13,080 --> 01:02:15,880
COMMUNITIES USING OTHER

1272
01:02:15,880 --> 01:02:17,000
LANGUAGES AND ARE THERE ANY

1273
01:02:17,000 --> 01:02:19,440
EXAMPLES THAT WE KNOW OF WHERE

1274
01:02:19,440 --> 01:02:20,760
BARRIERS TO INTERMARRIAGE WERE

1275
01:02:20,760 --> 01:02:22,800
NOT PLACED AND DEAF COMMUNITIES

1276
01:02:22,800 --> 01:02:24,320
FOLLOWED A DIFFERENT TRAJECTORY

1277
01:02:24,320 --> 01:02:27,000
OVER GENERATIONS?

1278
01:02:27,000 --> 01:02:30,040
>>THAT IS A WONDERFUL
QUESTION.

1279
01:02:30,040 --> 01:02:33,760
INDEED BELL WAS INFLUENCIAL, IT

1280
01:02:33,760 --> 01:02:38,320
CONFIRMED WHAT GERMAN EDUCATORS

1281
01:02:38,320 --> 01:02:41,200
WERE ALREADY THE HERD THEY HAD

1282
01:02:41,200 --> 01:02:42,720
IN PLACE IN -- METHOD THEY HAD

1283
01:02:42,720 --> 01:02:46,920
IN PLACE IN DEAF EDUCATION AND

1284
01:02:46,920 --> 01:02:49,080
OLE TO COMPILE STATISTICS TO SEE

1285
01:02:49,080 --> 01:02:50,520
IF WHAT THEY WERE OBSERVING IN

1286
01:02:50,520 --> 01:02:52,520
THE SCHOOLS COULD CONFIRM AND

1287
01:02:52,520 --> 01:02:56,520
VALIDATE BELL'S RESEARCH.

1288
01:02:56,520 --> 01:02:59,400
HOWEVER, SCHOOLS FOR THE DEAF

1289
01:02:59,400 --> 01:03:00,080
CHILDREN LIKE GALLAUDET

1290
01:03:00,080 --> 01:03:01,480
UNIVERSITY AND SOME SCHOOLS IN

1291
01:03:01,480 --> 01:03:03,520
FRANCE ARGUED THE OPPOSITE. 

1292
01:03:03,520 --> 01:03:05,680
THEY CLAIM THAT THEIR STATISTICS

1293
01:03:05,680 --> 01:03:07,920
DID NOT -- COULD NOT VERIFY WHAT

1294
01:03:07,920 --> 01:03:11,200
BELL WAS SEEING, IN OTHER WORDS,

1295
01:03:11,200 --> 01:03:15,200
WHILE THEY SAW HEREDITARY

1296
01:03:15,200 --> 01:03:17,400
DEAFNESS THROUGH GENERATIONS OF

1297
01:03:17,400 --> 01:03:18,520
DEAF INTERMARRIAGE, THEY DIDN'T

1298
01:03:18,520 --> 01:03:24,600
SEE THE PERCENTAGE AS WORRYING

1299
01:03:24,600 --> 01:03:29,560
AS BELL WAS AND IT WASN'T A

1300
01:03:29,560 --> 01:03:30,800
CONCERN THAT WERE TERRIFYING

1301
01:03:30,800 --> 01:03:33,920
ENOUGH TO WARRANT PREVENTIVE

1302
01:03:33,920 --> 01:03:35,440
MEASURES BELL WAS ADVOCATING

1303
01:03:35,440 --> 01:03:37,160
FOR. FURTHER STUDIES IN THE

1304
01:03:37,160 --> 01:03:39,240
EARLY 20TH CENTURY CONFIRM THAT

1305
01:03:39,240 --> 01:03:42,440
THE RATE OF HEREDITARY

1306
01:03:42,440 --> 01:03:43,600
TRANSMISSION TO DEAF

1307
01:03:43,600 --> 01:03:46,760
INTERMARRIAGE WAS ACTUALLY MUCH

1308
01:03:46,760 --> 01:03:47,400
MUCH LOWER THAN BELL FOUND.

1309
01:03:47,400 --> 01:03:50,680
>>I THINK I WAS THINKING
JUST

1310
01:03:50,680 --> 01:03:51,960
ABOUT THE QUESTION AND YOUR

1311
01:03:51,960 --> 01:03:53,240
RESPONSE WHERE IN THE FOR

1312
01:03:53,240 --> 01:03:55,520
EXAMPLE IN THE PACE OF THE CHECK

1313
01:03:55,520 --> 01:03:59,000
EUGENICS MOVEMENT THERE WAS

1314
01:03:59,000 --> 01:03:59,840
SIGNIFICANT INFLUENCE OF BELL

1315
01:03:59,840 --> 01:04:01,000
BUT THAT IS ACTUALLY A VERY

1316
01:04:01,000 --> 01:04:03,840
INTERESTING QUESTION OF HOW THIS

1317
01:04:03,840 --> 01:04:07,400
WAS PERCEIVED, THIS EUGENICS WAS

1318
01:04:07,400 --> 01:04:09,280
PERCEIVED THEN TRANSMITTED

1319
01:04:09,280 --> 01:04:11,200
ACROSS IN CERTAIN EUROPEAN

1320
01:04:11,200 --> 01:04:12,720
COMMUNITIES AS WELL. THAT WOULD

1321
01:04:12,720 --> 01:04:15,920
BE A VERY OPEN AND VERY PROFOUND

1322
01:04:15,920 --> 01:04:18,320
RESEARCH QUESTION I THINK FOR

1323
01:04:18,320 --> 01:04:23,160
FUTURE INVESTIGATORS.  ONE MORE

1324
01:04:23,160 --> 01:04:28,120
QUESTION THAT I HAVE. HOW DO

1325
01:04:28,120 --> 01:04:30,280
PEOPLE WHO BECOME DEAF DUE TO

1326
01:04:30,280 --> 01:04:33,480
TRAUMA OR DISEASE LATER IN LIFE

1327
01:04:33,480 --> 01:04:35,560
INTEGRATE WITH THE CONGENITAL

1328
01:04:35,560 --> 01:04:38,680
DEAF COMMUNITY AND YOUR THOUGHTS

1329
01:04:38,680 --> 01:04:42,240
ON THAT AND ALSO HISTORICAL

1330
01:04:42,240 --> 01:04:43,480
PERSPECTIVE AS WELL?

1331
01:04:43,480 --> 01:04:44,680
>>THAT IS GREAT QUESTION,
THAT

1332
01:04:44,680 --> 01:04:47,520
IS ALSO A HISTORICAL QUESTION

1333
01:04:47,520 --> 01:04:49,240
HOW ORAL SURGERY TRANSFORM OVER

1334
01:04:49,240 --> 01:04:52,600
THE COURSE OF THE 19TH CENTURY.

1335
01:04:52,600 --> 01:04:56,360
ORIGINALLY IN THE 1800s THEY

1336
01:04:56,360 --> 01:04:59,720
LUNCHED ALL GROUPS TOGETHER BUT

1337
01:04:59,720 --> 01:05:02,680
AS ALSO BECAME MUCH MORE

1338
01:05:02,680 --> 01:05:03,560
SPECIALIZED THE PARTICULARLY

1339
01:05:03,560 --> 01:05:05,080
ABLE TO CREATE DIFFERENT

1340
01:05:05,080 --> 01:05:07,120
CATEGORY OR TYPES OF HEARING

1341
01:05:07,120 --> 01:05:09,920
LOSS AND TYPES OF CONDITIONS

1342
01:05:09,920 --> 01:05:11,520
THAT WOULD AFFECT A DEAF PERSON

1343
01:05:11,520 --> 01:05:14,160
OVERALL WELL BEING. THEY DID NOT

1344
01:05:14,160 --> 01:05:16,440
CONSIDER PEOPLE WHO LOST HEARING

1345
01:05:16,440 --> 01:05:18,880
-- ESPECIALLY AFTER THE

1346
01:05:18,880 --> 01:05:21,920
LANGUAGE, CHILDREN WHO WERE BORN

1347
01:05:21,920 --> 01:05:23,400
HEARING AND THEN ABLE TO SPEAK

1348
01:05:23,400 --> 01:05:26,320
BUT LOST HEARING LATER, DUE THE

1349
01:05:26,320 --> 01:05:28,360
DISEASE OR TRAUMA, AS WELL AS

1350
01:05:28,360 --> 01:05:31,320
ADULTS WITH LATE ONSET DEAFNESS.

1351
01:05:31,320 --> 01:05:32,600
THEY LUNCH THEM UNDER ACCIDENT

1352
01:05:32,600 --> 01:05:36,240
OR ILLNESS. AND THEREFORE, MORE

1353
01:05:36,240 --> 01:05:37,400
LIKELY TO BENEFIT FROM MEDICAL

1354
01:05:37,400 --> 01:05:41,360
INTERVENTION. SO ONES WHO ARE

1355
01:05:41,360 --> 01:05:46,120
BORN DEAF OR ONES WHO LOST THE

1356
01:05:46,120 --> 01:05:48,600
HEARING BEFORE LANGUAGE ARE MORE

1357
01:05:48,600 --> 01:05:52,840
DIFFICULT CASE. AND MANY ALSO DO

1358
01:05:52,840 --> 01:05:54,720
BELIEVE THIS GROUP NEEDED MUCH

1359
01:05:54,720 --> 01:05:57,800
MORE INVASIVE MEDICAL

1360
01:05:57,800 --> 01:05:58,920
INTERVENTION AND IF INTERVENTION

1361
01:05:58,920 --> 01:06:01,680
WAS NOT POSSIBLE, THEN THIS WAS

1362
01:06:01,680 --> 01:06:04,560
A GROUP MOST LIKELY TO BENEFIT

1363
01:06:04,560 --> 01:06:05,840
FROM DEAF EDUCATION WHETHER

1364
01:06:05,840 --> 01:06:06,680
THROUGH SIGN SPEECH OR MIX OF

1365
01:06:06,680 --> 01:06:09,720
THAT.

1366
01:06:09,720 --> 01:06:12,160
>>SO WE HAD A QUESTION IN
THE

1367
01:06:12,160 --> 01:06:15,760
CHAT. I'M READING NOW HOW DO YOU

1368
01:06:15,760 --> 01:06:18,720
THINK BELL AND THE EUGENICS

1369
01:06:18,720 --> 01:06:20,280
MOVEMENT CONTRIBUTED TO

1370
01:06:20,280 --> 01:06:21,880
ALIENATING THOSE WITH HEARING

1371
01:06:21,880 --> 01:06:25,400
LOSS WHO ARE NOT CULTURALLY DEAF

1372
01:06:25,400 --> 01:06:26,720
BUT WHOM CONSTANTLY FEEL LEFT

1373
01:06:26,720 --> 01:06:29,040
OUT OF BOTH HEARING AND DEAF

1374
01:06:29,040 --> 01:06:31,600
CULTURE, HEARING AND DEAF ARE

1375
01:06:31,600 --> 01:06:34,880
BOTH IN QUOTE. 

1376
01:06:34,880 --> 01:06:36,840
>>THAT IS A WONDERFUL
QUESTION.

1377
01:06:36,840 --> 01:06:39,680
I APPLY MYSELF TO THAT AS WELL

1378
01:06:39,680 --> 01:06:42,000
BECAUSE I'M NOT FLUENT IN ASL

1379
01:06:42,000 --> 01:06:43,800
AND TOO DEAF TO BE PART OF THE

1380
01:06:43,800 --> 01:06:49,560
HEARING CULTURE EVEN THOUGH I

1381
01:06:49,560 --> 01:06:50,960
SPEAK. BELL'S WORK I THINK

1382
01:06:50,960 --> 01:06:52,680
ESPECIALLY WITHIN THE BROADER

1383
01:06:52,680 --> 01:06:57,280
EUGENICS MOVEMENT, COULDN'T

1384
01:06:57,280 --> 01:06:59,520
UNDERSTAND THAT TO BE CULTURALLY

1385
01:06:59,520 --> 01:07:03,400
DEAF WAS TO SEGREGATE YOURSELF

1386
01:07:03,400 --> 01:07:05,840
FROM THE BROADER HEARING

1387
01:07:05,840 --> 01:07:07,560
SOCIETY.  EFFECTIVELY HE PUSHED

1388
01:07:07,560 --> 01:07:08,840
FORWARD THIS IDEA OF BINARY,

1389
01:07:08,840 --> 01:07:11,360
THAT YOU ARE HEARING OR YOU ARE

1390
01:07:11,360 --> 01:07:12,800
DEAF AND NO RANGE IN BETWEEN.

1391
01:07:12,800 --> 01:07:16,640
EVEN THOUGH AS I MENTIONED TO

1392
01:07:16,640 --> 01:07:20,440
DR. DONAHUE'S QUESTION EARLIER,

1393
01:07:20,440 --> 01:07:22,680
THAT OTOLOGISTS WERE CREATING

1394
01:07:22,680 --> 01:07:24,360
DIFFERENT CATEGORIES AND TYPES

1395
01:07:24,360 --> 01:07:26,080
OF DEAFNESS. HOWEVER, THE

1396
01:07:26,080 --> 01:07:29,760
CREATION OF A BINARY IMPLIED

1397
01:07:29,760 --> 01:07:34,840
THAT DEAFNESS WAS NORMAL STATE

1398
01:07:34,840 --> 01:07:38,960
TO BEING HUMAN. AND EFFECT OF

1399
01:07:38,960 --> 01:07:45,800
BINARY WAS SO PROFOUND PROFOUND

1400
01:07:45,800 --> 01:07:47,600
THAT BY 1820s, ESPECIALLY

1401
01:07:47,600 --> 01:07:49,680
ADULTS WHO LOST HEARING FROM

1402
01:07:49,680 --> 01:07:52,560
LATE ONSET DEAFNESS,S FROM

1403
01:07:52,560 --> 01:07:57,280
DISEASES AND INCREASINGLY FROM

1404
01:07:57,280 --> 01:08:00,480
WORLD WAR I SOLDIERS WHO CAME

1405
01:08:00,480 --> 01:08:02,880
BACK DAMAGED FROM THE

1406
01:08:02,880 --> 01:08:04,200
BATTLEFIELD, CREATED A NEW

1407
01:08:04,200 --> 01:08:05,960
CATEGORY OF HEARING. THEY CLAIM

1408
01:08:05,960 --> 01:08:07,960
OTHERWISE NORMAL PEOPLE WHO HAD

1409
01:08:07,960 --> 01:08:09,840
A MEDICAL CONDITION BUT NOT

1410
01:08:09,840 --> 01:08:12,160
SEGREGATING FROM SOCIETY SO WE

1411
01:08:12,160 --> 01:08:13,480
WENT FROM ONE BINARY DEAFNESS

1412
01:08:13,480 --> 01:08:15,880
AND HEARING TO ODE ONE. DEAF OR

1413
01:08:15,880 --> 01:08:19,000
HARD OF HEARING. -- TO ANOTHER

1414
01:08:19,000 --> 01:08:20,680
ONE DEAF OR HARD OF HEARING AND

1415
01:08:20,680 --> 01:08:21,880
THAT BECAME THE APPLICATION FOR

1416
01:08:21,880 --> 01:08:23,200
MUCH OF THE 20TH CENTURY IN

1417
01:08:23,200 --> 01:08:26,160
TERMS OF CREATING DEAF WITH A

1418
01:08:26,160 --> 01:08:29,640
CAPITAL D AS AN OUTLIER AND HARD

1419
01:08:29,640 --> 01:08:31,400
OF HEARING PEOPLE AND MORE

1420
01:08:31,400 --> 01:08:32,760
NORMAL AND MORE LIKELY TO

1421
01:08:32,760 --> 01:08:34,640
ASSIMILATE TO SOCIETY.  HOWEVER,

1422
01:08:34,640 --> 01:08:37,640
THIS BINARY ACTUALLY COUNTER

1423
01:08:37,640 --> 01:08:39,920
ACTED THE EXPERIENCES OF MANY

1424
01:08:39,920 --> 01:08:41,600
DEAF PEOPLE. THERE WERE DEAF

1425
01:08:41,600 --> 01:08:44,240
PEOPLE WHO ARE BORN DEAF BUT

1426
01:08:44,240 --> 01:08:47,080
LATER PREDOMINANTLY HEARING

1427
01:08:47,080 --> 01:08:48,360
SOCIETY AND -- HARD OF HEARING

1428
01:08:48,360 --> 01:08:50,880
PEOPLE WHO DID SIGN, WHO WERE

1429
01:08:50,880 --> 01:08:53,000
PART OF DEAF COMMUNITY SO YOU

1430
01:08:53,000 --> 01:08:55,040
KIND OF HAVE WHAT I ARGUE IS AN

1431
01:08:55,040 --> 01:08:57,280
AUDITORY SPECTRUM. BUT IT DOES

1432
01:08:57,280 --> 01:08:58,400
INDEED COME FROM THIS CREATION

1433
01:08:58,400 --> 01:09:00,840
OF A BINARY. THIS OPPOSITION OF

1434
01:09:00,840 --> 01:09:05,200
NORMAL AND ABNORMAL. THAT LEMES

1435
01:09:05,200 --> 01:09:06,120
YOU DEFINE HOW DEAF PEOPLE,

1436
01:09:06,120 --> 01:09:08,280
MEDICAL EXPERTS, EDUCATORS

1437
01:09:08,280 --> 01:09:09,840
SOCIETY IN GENERAL, WERE

1438
01:09:09,840 --> 01:09:13,520
THINKING ABOUT WHAT DISABILITY

1439
01:09:13,520 --> 01:09:15,880
MEANT AND WHERE DISABLED PEOPLE

1440
01:09:15,880 --> 01:09:18,280
COULD FIT INTO SOCIETY. THANK

1441
01:09:18,280 --> 01:09:19,920
YOU FOR THAT QUESTION.

1442
01:09:19,920 --> 01:09:23,200
>>SO I THINK THAT IS ALL
THE

1443
01:09:23,200 --> 01:09:24,360
TIME THAT WE HAVE FOR QUESTIONS

1444
01:09:24,360 --> 01:09:26,240
BUT I JUST WANTED TO FOLLOW-UP

1445
01:09:26,240 --> 01:09:27,720
ON A POINT THAT YOU JUST MADE

1446
01:09:27,720 --> 01:09:31,040
THAT I THINK IS REALLY BRILLIANT

1447
01:09:31,040 --> 01:09:33,600
ABOUT THIS -- THE BINARY THAT IS

1448
01:09:33,600 --> 01:09:35,440
INTRODUCED BY EUGENICS, ALSO BY

1449
01:09:35,440 --> 01:09:37,480
ABLEISM. AND I THINK IT IS

1450
01:09:37,480 --> 01:09:39,200
IMPORTANT TO REALIZE THAT FOR

1451
01:09:39,200 --> 01:09:42,480
MANY DISABLED PEOPLE, MANY

1452
01:09:42,480 --> 01:09:44,800
MARGINALIZED COMMUNITIES,

1453
01:09:44,800 --> 01:09:47,000
BINARIES REALLY DON'T WORK AND

1454
01:09:47,000 --> 01:09:48,320
ONE OF THE FUNCTIONS OF THE

1455
01:09:48,320 --> 01:09:49,520
EUGENICS MOVEMENT IS TO PLACE

1456
01:09:49,520 --> 01:09:52,000
PEOPLE IN ONE CATEGORY OR THE

1457
01:09:52,000 --> 01:09:53,920
OTHER. THIS IS TOTALLY

1458
01:09:53,920 --> 01:09:55,960
UNREALISTIC AND VERY MUCH A

1459
01:09:55,960 --> 01:09:58,840
FEATURE OF IN MANY WAYS OUR

1460
01:09:58,840 --> 01:10:02,800
SOCIETY TODAY UNFORTUNATELY.  

1461
01:10:02,800 --> 01:10:05,480
THANK YOU SO MUCH MANY MS. VIRDI

1462
01:10:05,480 --> 01:10:08,680
FOR YOUR WONDERFUL IMPACTFUL

1463
01:10:08,680 --> 01:10:12,080
LECTURE. NOW I HAVE THE PLEASURE

1464
01:10:12,080 --> 01:10:14,600
OF INTRODUCING DR. TRACY KING

1465
01:10:14,600 --> 01:10:18,120
WHO IS GOING TO BE MODERATING A

1466
01:10:18,120 --> 01:10:20,880
PANEL. SO OVER TO YOU, TRACY,

1467
01:10:20,880 --> 01:10:21,520
THANKS VERY MUMP.

1468
01:10:21,520 --> 01:10:23,400
>>THERE THANK YOU, VERY
MUCH TO

1469
01:10:23,400 --> 01:10:25,920
ALL OF YOU. MY NAME IS TRACY

1470
01:10:25,920 --> 01:10:28,320
KING. I'M A MEDICAL OFFICER IN

1471
01:10:28,320 --> 01:10:29,960
THE INTELLECTUAL AND

1472
01:10:29,960 --> 01:10:31,560
DEVELOPMENTAL DISABILITIES

1473
01:10:31,560 --> 01:10:33,440
BRANCH. HERE AT THE EUNICE

1474
01:10:33,440 --> 01:10:35,120
KENNEDY SHRIVER NATIONAL

1475
01:10:35,120 --> 01:10:36,120
INSTITUTE OF CHILD HEALTH AND

1476
01:10:36,120 --> 01:10:39,880
HUMAN DEVELOPMENT. OR NICHD. FOR

1477
01:10:39,880 --> 01:10:42,200
VISUAL DESCRIPTION I'M A CHINESE

1478
01:10:42,200 --> 01:10:44,000
WOMAN WITH SHORT CURLY BLACK

1479
01:10:44,000 --> 01:10:46,520
HAIR AND I'M WEARING A BLACK

1480
01:10:46,520 --> 01:10:48,720
SWEATER AND I'M SITTING IN FRONT

1481
01:10:48,720 --> 01:10:50,920
OF A BLUE ZOOM BACKGROUND. IT IS

1482
01:10:50,920 --> 01:10:52,560
MY REAL PRIVILEGE TO BE

1483
01:10:52,560 --> 01:10:54,360
MODERATING TODAY'S SESSION ON

1484
01:10:54,360 --> 01:10:56,440
ABLEISM IN THE SCIENTIFIC WORK

1485
01:10:56,440 --> 01:10:57,680
FORCE. I WOULD LIKE TO SPEND

1486
01:10:57,680 --> 01:10:59,760
JUST A MINUTE EXPLAINING OUR

1487
01:10:59,760 --> 01:11:01,440
PLANNED FORMAT FOR THIS SESSION 

1488
01:11:01,440 --> 01:11:03,240
I'M GOING TO INTRODUCE EACH OF

1489
01:11:03,240 --> 01:11:06,200
THE THREE PANELISTS NOW BEFORE

1490
01:11:06,200 --> 01:11:08,600
THE PANEL GETS UNDERWAY, EACH

1491
01:11:08,600 --> 01:11:10,800
WILL PRESENT A BRIEF SLIDE

1492
01:11:10,800 --> 01:11:12,320
PRESENTATION REFLECTING THE

1493
01:11:12,320 --> 01:11:15,840
UNIQUE EXPERIENCE AND EXPERTISE

1494
01:11:15,840 --> 01:11:17,720
ON ABLEISM IN THE SCIENTIFIC AND

1495
01:11:17,720 --> 01:11:19,600
CLINICAL WORK FORCE. THEN I WILL

1496
01:11:19,600 --> 01:11:21,280
MODERATE A ROUND TABLE STYLE

1497
01:11:21,280 --> 01:11:23,040
DISCUSSION AMONG OUR PANELISTS

1498
01:11:23,040 --> 01:11:24,960
TO EXPAND ON SOME OF THE POINTS

1499
01:11:24,960 --> 01:11:26,400
COMING OUT OF THEIR FORMAL

1500
01:11:26,400 --> 01:11:28,920
PRESENTATIONS.  FINALLY, WE WILL

1501
01:11:28,920 --> 01:11:30,320
TRY TO ANSWER ANY QUESTIONS

1502
01:11:30,320 --> 01:11:34,240
SUBMITTED BY WORKSHOP ATTENDEES 

1503
01:11:34,240 --> 01:11:36,000
SO NOW I WOULD LIKE TO INTRODUCE

1504
01:11:36,000 --> 01:11:42,640
OUR PANELISTS FOR THIS SESSION. 

1505
01:11:42,640 --> 01:11:45,560
TO MY ZOOM VIDEOCAST COLLEAGUES,

1506
01:11:45,560 --> 01:11:47,600
I SEE CHRIS'S WINDOW STILL

1507
01:11:47,600 --> 01:11:53,040
SHOWING IN MY ZOOM WINDOW. SO

1508
01:11:53,040 --> 01:11:57,080
FOR THE PANELISTS, FIRST I WOULD

1509
01:11:57,080 --> 01:12:00,480
LIKE TO INTRODUCE PEPPAR CYR.

1510
01:12:00,480 --> 01:12:02,520
M.D. Ph.D. STUDENT AT

1511
01:12:02,520 --> 01:12:03,560
WASHINGTON UNIVERSITY IN ST.

1512
01:12:03,560 --> 01:12:06,360
LOUIS.  SHE'S PASSIONATE ABOUT

1513
01:12:06,360 --> 01:12:08,960
DISABILITY INCLUSION IN MEDICINE

1514
01:12:08,960 --> 01:12:09,960
ENSURING DISABLED PATIENTS

1515
01:12:09,960 --> 01:12:11,920
RECEIVE HIGH QUALITY CARE AND

1516
01:12:11,920 --> 01:12:12,800
MAKING MEDICINE ITSELF MORE

1517
01:12:12,800 --> 01:12:14,640
ACCESSIBLE AND WELCOMING TO

1518
01:12:14,640 --> 01:12:18,000
DISABLED PROVIDERS. HER THESIS

1519
01:12:18,000 --> 01:12:20,440
RESEARCH IS USING ADVANCED

1520
01:12:20,440 --> 01:12:21,960
NEUROIMAGING IN VERY PRE-TERM

1521
01:12:21,960 --> 01:12:23,480
INFANTS TO BETTER PREDICT

1522
01:12:23,480 --> 01:12:25,400
INDIVIDUAL MOTOR OUTCOMES

1523
01:12:25,400 --> 01:12:27,640
THROUGH AGE TEN YEARS. A LONG

1524
01:12:27,640 --> 01:12:29,720
SIDE HER STUDIES PEPPAR IS

1525
01:12:29,720 --> 01:12:30,520
ACTIVELY INVOLVED IN WORK WITH

1526
01:12:30,520 --> 01:12:32,080
THE AMERICAN ACADEMY OF

1527
01:12:32,080 --> 01:12:33,560
PEDIATRICS COUNCIL ON CHILDREN

1528
01:12:33,560 --> 01:12:36,600
WITH DISABILITIES AND MEDICAL

1529
01:12:36,600 --> 01:12:40,000
SCHOOLS TEACH ABOUT DISABILITY. 

1530
01:12:40,000 --> 01:12:43,880
NEXT I WOULD LIKE TO INTRODUCE

1531
01:12:43,880 --> 01:12:45,960
DIANA CEJAS, PEDIATRIC

1532
01:12:45,960 --> 01:12:47,720
NEUROLOGIST AND FACULTY AT THE

1533
01:12:47,720 --> 01:12:49,000
CAROLINA INSTITUTE FOR

1534
01:12:49,000 --> 01:12:49,600
DEVELOPMENTAL DISABILITIES AT

1535
01:12:49,600 --> 01:12:50,840
THE UNIVERSITY OF NORTH CAROLINA

1536
01:12:50,840 --> 01:12:53,920
AT CHAPEL HILL. HER CLINICAL

1537
01:12:53,920 --> 01:12:56,880
WORK AND RESEARCH FOCUS

1538
01:12:56,880 --> 01:13:00,000
IMPROVING CARE DELIVERY AND

1539
01:13:00,000 --> 01:13:01,800
HEALTH OUTCOMES FOR CHILDREN AND

1540
01:13:01,800 --> 01:13:02,880
YOUNG ADULTS WITH

1541
01:13:02,880 --> 01:13:04,080
NEURODEVELOPMENTAL DISABILITIES.

1542
01:13:04,080 --> 01:13:05,960
SINCE SURVIVING CANCER AND A

1543
01:13:05,960 --> 01:13:08,360
STROKE DURING HER RESIDENCY, DR.

1544
01:13:08,360 --> 01:13:09,600
CEJAS DEVOTED MUCH OF HER CAREER

1545
01:13:09,600 --> 01:13:12,160
TO PATIENT ADVOCACY AND

1546
01:13:12,160 --> 01:13:13,760
IMPROVING COMMUNICATION BETWEEN

1547
01:13:13,760 --> 01:13:14,760
HEALTHCARE PROVIDERS AND THE

1548
01:13:14,760 --> 01:13:16,960
DISABILITY COMMUNITY. 

1549
01:13:16,960 --> 01:13:17,960
PARTICULARLY YOUNG DISABLED

1550
01:13:17,960 --> 01:13:22,760
PATIENTS OF COLOR. OUR THIRD

1551
01:13:22,760 --> 01:13:25,880
PANELIST TODAY IS PETE POULOS,

1552
01:13:25,880 --> 01:13:26,840
M.D. DEGREE AT UNIVERSITY OF

1553
01:13:26,840 --> 01:13:29,480
TEXAS MEDICAL SCHOOL HOUSTON. HE

1554
01:13:29,480 --> 01:13:32,760
COMPLETED HIS INTERNAL MEDICINE

1555
01:13:32,760 --> 01:13:36,240
RESIDENCY AT UNIVERSITY OF

1556
01:13:36,240 --> 01:13:36,800
CALIFORNIA SAN FRANCISCO IN

1557
01:13:36,800 --> 01:13:38,680
2002. HE STAYED AT UCSF AS

1558
01:13:38,680 --> 01:13:40,120
GASTRO ENTEROLOGY FELLOW BUT

1559
01:13:40,120 --> 01:13:44,200
DECIDED TO RETRAIN IN RADIOLOGY

1560
01:13:44,200 --> 01:13:46,000
AFTER A SPINAL CORD INJURY FROM

1561
01:13:46,000 --> 01:13:50,720
2003. AS INCOMPLETE QUADRIPLEGIC

1562
01:13:50,720 --> 01:13:52,680
HE DID STANFORD UNIVERSITY AND

1563
01:13:52,680 --> 01:13:55,960
FACULTY RADIOLOGY AND GASTRO

1564
01:13:55,960 --> 01:13:58,200
ENTEROLOGY AND HEPATOLOGY. IN

1565
01:13:58,200 --> 01:14:00,360
2018 HE FOUNDED THE STANDARD

1566
01:14:00,360 --> 01:14:01,480
ALLIANCE FOR DISABILITY

1567
01:14:01,480 --> 01:14:02,720
INCLUSION AN EQUITY, HE SERVES

1568
01:14:02,720 --> 01:14:06,640
AS CO-CHAIR. IN THAT ROLE HE

1569
01:14:06,640 --> 01:14:07,200
ADVOCATES FOR STUDENTS AND

1570
01:14:07,200 --> 01:14:09,080
HEALTHCARE PROVIDERS WITH

1571
01:14:09,080 --> 01:14:10,000
DISABILITIES AND FOR HEALTH

1572
01:14:10,000 --> 01:14:12,760
EQUITY FOR DISABLED PATIENTS.  

1573
01:14:12,760 --> 01:14:16,400
SO WITH THAT, IT IS MY PLEASURE

1574
01:14:16,400 --> 01:14:18,520
TO TURN OVER TO OUR FIRST

1575
01:14:18,520 --> 01:14:20,080
PRESENTER WHO WILL BE PEPPAR

1576
01:14:20,080 --> 01:14:30,200
CYR.

1577
01:14:37,560 --> 01:14:41,360
>>SO I'M PEPPAR CYR.
BRIEF

1578
01:14:41,360 --> 01:14:43,640
DESCRIPTION, I'M A WOMAN IN MY

1579
01:14:43,640 --> 01:14:46,960
LATE 20s, WITH A MULTI-RACIAL

1580
01:14:46,960 --> 01:14:48,880
BACKGROUND, WITH LIGHT SKIN AND

1581
01:14:48,880 --> 01:14:50,080
STRAIGHT DARK HAIR THAT IS ABOUT

1582
01:14:50,080 --> 01:14:52,400
HALF PULLED BACK. AND I'M

1583
01:14:52,400 --> 01:14:55,160
WEARING A BLACK SHORT SLEEVE

1584
01:14:55,160 --> 01:14:58,880
DRESS WITH A SKELETON NECKLINE.

1585
01:14:58,880 --> 01:15:01,120
TODAY I AM TALKING ABOUT

1586
01:15:01,120 --> 01:15:02,600
EXPERIENCES OF DISABLE AND

1587
01:15:02,600 --> 01:15:04,680
MEDICAL GRAD STUDENTS, OTHERWISE

1588
01:15:04,680 --> 01:15:06,680
UNIQUELY QUALIFIED DISABLED

1589
01:15:06,680 --> 01:15:10,200
MEDICAL AND GRADUATE STUDENTS.  

1590
01:15:10,200 --> 01:15:12,000
SO I WILL START THE TALK BY THE

1591
01:15:12,000 --> 01:15:13,480
MAIN POINT WHICH IS DISABLED

1592
01:15:13,480 --> 01:15:15,000
STUDENTS BRING UNIQUE VALUE TO

1593
01:15:15,000 --> 01:15:16,680
MEDICINE AND SCIENCE BUT MUST

1594
01:15:16,680 --> 01:15:18,360
STRUGGLE AGAINST ABLEISM TO DO

1595
01:15:18,360 --> 01:15:21,200
IT. HOWEVER CHANGE IS HAPPENING

1596
01:15:21,200 --> 01:15:23,160
IN PART PUSHED FORWARD BY

1597
01:15:23,160 --> 01:15:25,600
DISABLED STUDENTS THEMSELVES.  

1598
01:15:25,600 --> 01:15:26,760
SO I WANT TO START BY ASKING YOU

1599
01:15:26,760 --> 01:15:29,760
TO IMAGINE AN APPLICANT MAYBE TO

1600
01:15:29,760 --> 01:15:30,760
MEDICAL SCHOOL, RESIDENCY

1601
01:15:30,760 --> 01:15:32,200
GRADUATE SCHOOL, POST DOC,

1602
01:15:32,200 --> 01:15:35,280
WHATEVER IS APPLICABLE TO YOU. 

1603
01:15:35,280 --> 01:15:37,320
AND AS YOU READ THIS APPLICATION

1604
01:15:37,320 --> 01:15:38,760
YOU MAYBE HAVE INTERVIEW YOU

1605
01:15:38,760 --> 01:15:39,800
LOOK AT THE IMPRESSION. THIS

1606
01:15:39,800 --> 01:15:43,320
PERSON IS SELF-AWARE, PROACTIVE,

1607
01:15:43,320 --> 01:15:44,480
PERSEVERED, THEY SET APPROPRIATE

1608
01:15:44,480 --> 01:15:46,120
GOALS AND MAKE USE OF SOCIAL

1609
01:15:46,120 --> 01:15:47,680
SUPPORT SYSTEMS AND EMOTIONAL

1610
01:15:47,680 --> 01:15:49,160
COPING STRATEGIES TO REACH THOSE

1611
01:15:49,160 --> 01:15:50,920
GOALS. NOW, MY OPINION THIS

1612
01:15:50,920 --> 01:15:52,600
SOUNDS LIKE A GOOD APPLICANT AND

1613
01:15:52,600 --> 01:15:53,640
SOMEONE TO GET TO KNOW FURTHER

1614
01:15:53,640 --> 01:15:54,960
AND BRING INTO MY TEAM OR

1615
01:15:54,960 --> 01:15:56,480
PROGRAM. BUT I DIDN'T COME UP

1616
01:15:56,480 --> 01:15:58,720
WITH THIS LIST OF ATTRIBUTES OUT

1617
01:15:58,720 --> 01:16:00,480
OF NOWHERE. THIS IS BEEN FOUND

1618
01:16:00,480 --> 01:16:03,760
TO BE SET OF ATTRIBUTES SEEN

1619
01:16:03,760 --> 01:16:05,360
AMONG WHAT THE ARTICLE

1620
01:16:05,360 --> 01:16:06,520
CONSIDERED SUCCESSFUL DISABLED

1621
01:16:06,520 --> 01:16:08,040
PEOPLE. IF ONE IS GET FOG THE

1622
01:16:08,040 --> 01:16:09,400
POINT AFTER APPLYING TO MEDICAL

1623
01:16:09,400 --> 01:16:11,800
OR GRADUATE SCHOOL I WOULD ARGUE

1624
01:16:11,800 --> 01:16:13,040
THEY HAVE ACHIEVED A CERTAIN

1625
01:16:13,040 --> 01:16:14,040
MEASURE OF SUCCESS AND WHEN YOU

1626
01:16:14,040 --> 01:16:16,120
ARE LOOKING APPLICANT POOL AND

1627
01:16:16,120 --> 01:16:18,040
YOU SEE SOMEONE WHO DISCLOSES

1628
01:16:18,040 --> 01:16:19,040
SOMEWHERE A DISABILITY, YOU

1629
01:16:19,040 --> 01:16:21,680
SHOULD BE AWARE THESE QUALITIES

1630
01:16:21,680 --> 01:16:23,560
SOME SUBSET ARE LIKELY ALREADY

1631
01:16:23,560 --> 01:16:26,520
PRESENT IN THIS APPLICANT. BUT

1632
01:16:26,520 --> 01:16:27,840
EVEN BEYOND SOME OF THE PIECES

1633
01:16:27,840 --> 01:16:29,960
THAT MAYBE APPLICABLE ACROSS

1634
01:16:29,960 --> 01:16:31,400
FIELDS NO MATTER WHAT YOU ARE

1635
01:16:31,400 --> 01:16:33,640
APPLYING TO, I BELIEVE DISABLED

1636
01:16:33,640 --> 01:16:35,080
STUDENTS BRING A SPECIFIC UNIQUE

1637
01:16:35,080 --> 01:16:37,160
VALUE INTO MEDICINE AND SCIENCE

1638
01:16:37,160 --> 01:16:39,800
IN PARTICULAR. SO FOR MEDICINE,

1639
01:16:39,800 --> 01:16:44,280
BUILDING ON PREVIOUS WORK,

1640
01:16:44,280 --> 01:16:45,800
AROUND CONCORDANCE IN IDENTITY

1641
01:16:45,800 --> 01:16:47,480
BETWEEN PATIENTS AND PROVIDERS

1642
01:16:47,480 --> 01:16:49,320
FOR RACE AND ETHNICITY, THERE'S

1643
01:16:49,320 --> 01:16:51,360
MORE RECENT EFFORTS TO DO

1644
01:16:51,360 --> 01:16:53,320
QUALITATIVE RESEARCH TO SHOW

1645
01:16:53,320 --> 01:16:54,520
THESE FINDINGS SEEM TO HOLD UP

1646
01:16:54,520 --> 01:16:57,960
IN THE DISABLED POPULATION. OF

1647
01:16:57,960 --> 01:16:59,040
GREATER BETTER RELATIONSHIPS

1648
01:16:59,040 --> 01:17:00,120
BETWEEN THE PATIENTS AND

1649
01:17:00,120 --> 01:17:01,640
PROVIDERS AND POTENTIALLY ALSO

1650
01:17:01,640 --> 01:17:04,640
BETTER OUTCOMES.  THERE IS ALSO

1651
01:17:04,640 --> 01:17:05,960
RESEARCH WITH MEDICAL STUDENTS

1652
01:17:05,960 --> 01:17:09,320
SHOWING DISABLED MEDICAL

1653
01:17:09,320 --> 01:17:10,320
STUDENTS WHEN GIVEN

1654
01:17:10,320 --> 01:17:11,360
QUESTIONNAIRES ABOUT DIFFERENT

1655
01:17:11,360 --> 01:17:12,920
ASPECTS OF BURN OUT COMPARED TO

1656
01:17:12,920 --> 01:17:14,800
PEERS DISABLED STUDENTS SHOW

1657
01:17:14,800 --> 01:17:16,160
HIGHER RATES OF EXHAUSTION BUT

1658
01:17:16,160 --> 01:17:18,800
ALSO HIGHER SCORES FOR EMPATHY

1659
01:17:18,800 --> 01:17:21,680
EVEN COMPARED THE THEIR

1660
01:17:21,680 --> 01:17:24,040
NON-DISABLED PEERS.  BRINGING IN

1661
01:17:24,040 --> 01:17:25,360
THAT PIECE OF PATIENT

1662
01:17:25,360 --> 01:17:26,280
UNDERSTANDING AND EMPATHY WE

1663
01:17:26,280 --> 01:17:27,600
TALK ABOUT IN COMMUNITY STARTING

1664
01:17:27,600 --> 01:17:30,520
TO SHOW UP IN THE DATA. WHILE I

1665
01:17:30,520 --> 01:17:31,800
DON'T HAVE A CITATION FOR THIS

1666
01:17:31,800 --> 01:17:33,520
PIECE, I DO WANT TO HIGHLIGHT A

1667
01:17:33,520 --> 01:17:36,240
LOT OF THE WORK THAT I HAVE SEEN

1668
01:17:36,240 --> 01:17:38,360
AROUND MAKING PATIENTS FACES

1669
01:17:38,360 --> 01:17:40,920
MORE ACCESSIBILITY SPACES MORE

1670
01:17:40,920 --> 01:17:41,560
ACCESSIBLE AND HEALTHCARE IN

1671
01:17:41,560 --> 01:17:43,440
GENERAL MORE ACCESSIBLE OFTEN

1672
01:17:43,440 --> 01:17:44,480
SEEMS TO BE GETTING PUSHED

1673
01:17:44,480 --> 01:17:45,840
FORWARD BY DISABLED MED CAP

1674
01:17:45,840 --> 01:17:46,920
STUDENTS. WITH THAT I WANT TO

1675
01:17:46,920 --> 01:17:48,400
HIGHLIGHT THAT THROUGHOUT THIS

1676
01:17:48,400 --> 01:17:50,680
ENTIRE PRESENTATION I PUT

1677
01:17:50,680 --> 01:17:51,400
CITATIONS INTO EVERYTHING TO

1678
01:17:51,400 --> 01:17:53,160
FURTHER BACK UP THE IDEA THAT

1679
01:17:53,160 --> 01:17:55,240
THIS IS SOMETHING THAT'S GETTING

1680
01:17:55,240 --> 01:17:56,960
STUDIED, SOMETHING THAT IS NOT

1681
01:17:56,960 --> 01:17:58,240
JUST LATER WE WILL BE TALKING

1682
01:17:58,240 --> 01:17:59,160
MORE ABOUT PERSONAL EXPERIENCES

1683
01:17:59,160 --> 01:18:01,840
BUT THIS PART IS BACKED UP BY

1684
01:18:01,840 --> 01:18:04,520
EVIDENCE OF VARIOUS KINDS. SO ON

1685
01:18:04,520 --> 01:18:07,240
THE SCIENCE SIDE, IT STARTING TO

1686
01:18:07,240 --> 01:18:08,200
BECOME A LITTLE MORE ACCEPTABLE

1687
01:18:08,200 --> 01:18:10,000
FOR PEOPLE TO TALK ABOUT DOING

1688
01:18:10,000 --> 01:18:11,720
WHAT WE CALL PERSONALLY RELEVANT

1689
01:18:11,720 --> 01:18:13,640
RESEARCH OR DOING RESEARCH ON A

1690
01:18:13,640 --> 01:18:15,680
CONDITION OR POPULATION THAT YOU

1691
01:18:15,680 --> 01:18:17,600
MIGHT BELONG TO OR SOMETIMES

1692
01:18:17,600 --> 01:18:19,160
OTHER SIGNIFICANT TIES TO.

1693
01:18:19,160 --> 01:18:20,760
PARTICULARLY IN PSYCHOLOGY THIS

1694
01:18:20,760 --> 01:18:23,280
CAN BE QUITE STIGMATIZED BUT I

1695
01:18:23,280 --> 01:18:24,880
BELIEVE THAT IS STARTING TO

1696
01:18:24,880 --> 01:18:26,440
CHANGE AS PEOPLE ARE BEGINNING

1697
01:18:26,440 --> 01:18:28,160
TO RECOGNIZE THAT DOING RESEARCH

1698
01:18:28,160 --> 01:18:30,680
FOR A POPULATION YOU BELONG TO

1699
01:18:30,680 --> 01:18:31,960
CAN BRING ADDITIONAL MOTIVATION

1700
01:18:31,960 --> 01:18:33,560
AND INSIGHT INTO THE RELEVANT

1701
01:18:33,560 --> 01:18:34,720
KINDS OF QUESTIONS INTO SEEING

1702
01:18:34,720 --> 01:18:36,720
THE BIGGER PICTURE AND INTO

1703
01:18:36,720 --> 01:18:38,200
BEING ABLE TO BUILD SORTS OF

1704
01:18:38,200 --> 01:18:39,720
RELATIONSHIPS WITH COMMUNITIES,

1705
01:18:39,720 --> 01:18:41,440
THAT WE NEED IN ORDER TO DO THE

1706
01:18:41,440 --> 01:18:42,920
KINDS OF COMMUNITY ENGAGED

1707
01:18:42,920 --> 01:18:45,520
RESEARCH THAT ALLOW US TO REALLY

1708
01:18:45,520 --> 01:18:46,760
ADDRESS MOST SALIENT PROBLEMS TO

1709
01:18:46,760 --> 01:18:48,080
THE PEOPLE THAT ARE BEING

1710
01:18:48,080 --> 01:18:51,120
STUDIED.  THERE IS ALSO BEEN

1711
01:18:51,120 --> 01:18:54,400
WORK INDICATING THAT ABLEISM IS

1712
01:18:54,400 --> 01:18:56,000
HOLDING SCIENCE BACK EVEN IN

1713
01:18:56,000 --> 01:18:58,360
AREAS NOT SPECIFICALLY ABOUT A

1714
01:18:58,360 --> 01:18:59,200
PARTICULAR DISABILITY OR

1715
01:18:59,200 --> 01:19:01,600
CONDITION, THE PAPERS I'M

1716
01:19:01,600 --> 01:19:04,040
SETTING HERE IS EVOLUTIONAL

1717
01:19:04,040 --> 01:19:05,440
BIOLOGY AND OKAY PACE SCIENCE

1718
01:19:05,440 --> 01:19:06,800
DISABLED AUTHOR ON THE PAPERS

1719
01:19:06,800 --> 01:19:09,680
POINT OUT THE WAYS THAT ABLEIST

1720
01:19:09,680 --> 01:19:10,480
IDEAS HAVE BEEN LIMITING THE

1721
01:19:10,480 --> 01:19:12,480
WAYS WE THINK ABOUT DIFFERENT

1722
01:19:12,480 --> 01:19:16,960
ASPECTS OF SCIENCE MORE BROADLY 

1723
01:19:16,960 --> 01:19:18,160
EVERYTHING I TALK ABOUT TO THIS

1724
01:19:18,160 --> 01:19:19,720
POINT HAS BEEN A LITTLE MORE

1725
01:19:19,720 --> 01:19:22,360
VAGUE. THERE'S NO NUMBERS HERE.

1726
01:19:22,360 --> 01:19:24,200
AND RESEARCH LOOKING AT

1727
01:19:24,200 --> 01:19:25,480
APPLICATIONS FOR RESIDENCY

1728
01:19:25,480 --> 01:19:27,000
TRAINING HAS SHOWN THAT WE TEND

1729
01:19:27,000 --> 01:19:28,280
TO UNDERVALUE THINGS WE CAN'T

1730
01:19:28,280 --> 01:19:29,920
PUT NUMBERS ON. I THINK

1731
01:19:29,920 --> 01:19:31,320
ESPECIALLY COMING FROM A

1732
01:19:31,320 --> 01:19:33,080
SCIENTIST BACKGROUND WE LIKE TO

1733
01:19:33,080 --> 01:19:36,000
ME THINGS AND QUANTIFY THEM. WE

1734
01:19:36,000 --> 01:19:37,760
DIDN'T QUANTIFY? TEST SCORE SCO.

1735
01:19:37,760 --> 01:19:39,920
THAT CAN BE A BIG AREA FOR

1736
01:19:39,920 --> 01:19:41,640
DIFFICULTIES FOR DISABLED

1737
01:19:41,640 --> 01:19:42,880
STUDENTS SPECIFICALLY AROUND

1738
01:19:42,880 --> 01:19:44,560
ACCOMMODATIONS FOR THOSE TESTS.

1739
01:19:44,560 --> 01:19:48,240
IN THE 2018, 2019 ACADEMIC YEAR,

1740
01:19:48,240 --> 01:19:50,560
RESEARCH FOUND THAT 52% OF

1741
01:19:50,560 --> 01:19:51,920
ACCOMMODATION APPLICATIONS FOR

1742
01:19:51,920 --> 01:19:54,360
THE USMLE STEP 1, THE FIRST OF

1743
01:19:54,360 --> 01:19:56,720
THE SERIES OF LICENSING EXAMS

1744
01:19:56,720 --> 01:19:59,160
FOR PHYSICIANS THOSE APPLICATION

1745
01:19:59,160 --> 01:20:01,760
WERE DENIED.  OF THOSE MORE THAN

1746
01:20:01,760 --> 01:20:03,000
HALF RESULTED IN STUDENTS HAVING

1747
01:20:03,000 --> 01:20:06,600
TO DELAY PROGRESSION LIEU THROUH

1748
01:20:06,600 --> 01:20:08,400
MEDICAL SCHOOL AND OTHERS

1749
01:20:08,400 --> 01:20:09,880
APPLICATION DENIED THREE

1750
01:20:09,880 --> 01:20:11,280
QUARTERS PROCEEDED TO TAKE THE

1751
01:20:11,280 --> 01:20:12,960
TEST WITHOUT ACCOMMODATIONS AND

1752
01:20:12,960 --> 01:20:14,520
A THIRD FAILED.  A FEW HAD TO

1753
01:20:14,520 --> 01:20:16,600
WITHDRAW OR DISMISS FROM MEDICAL

1754
01:20:16,600 --> 01:20:17,400
SCHOOL BECAUSE OF THIS. SO WE

1755
01:20:17,400 --> 01:20:19,080
ARE LOSING DOCTORS AND

1756
01:20:19,080 --> 01:20:20,760
DEMORALIZING PEOPLE BASED ON

1757
01:20:20,760 --> 01:20:21,720
THEIR ABILITY TO GET THOSE

1758
01:20:21,720 --> 01:20:24,280
ACCOMMODATIONS.  AND BEAR IN

1759
01:20:24,280 --> 01:20:26,000
MIND THIS 52% IS PERCENT OF

1760
01:20:26,000 --> 01:20:27,400
PEOPLE WHO ACTUALLY APPLIED. I

1761
01:20:27,400 --> 01:20:30,400
KNOW PERSONALLY PEOPLE WHO HAVE

1762
01:20:30,400 --> 01:20:32,640
LOOKED AT THE ONEROUS AMOUNT OF

1763
01:20:32,640 --> 01:20:34,400
DOCUMENTATION INVOLVED AS WELL

1764
01:20:34,400 --> 01:20:36,800
AS THIS LOW SUCCESS RATE AND

1765
01:20:36,800 --> 01:20:39,880
DECIDED NOT TO EVEN APPLY. EVEN

1766
01:20:39,880 --> 01:20:40,920
THOUGH PERHAPS THEY HAVE BEEN

1767
01:20:40,920 --> 01:20:42,040
GETTING ACCOMMODATIONS IN

1768
01:20:42,040 --> 01:20:43,520
MEDICAL SCHOOL FOR YEARS, THEY

1769
01:20:43,520 --> 01:20:46,440
HAVE GOOD REASONS TO NEED THEM,

1770
01:20:46,440 --> 01:20:47,200
BUT THE SYSTEM MAKES IT TOO

1771
01:20:47,200 --> 01:20:51,520
DIFFICULT. IN PARTICULAR,

1772
01:20:51,520 --> 01:20:52,320
CONCERNS SOMETIMES ARE YOU

1773
01:20:52,320 --> 01:20:53,720
GETTING ACCOMMODATIONS DOING

1774
01:20:53,720 --> 01:20:55,560
LESS WORK, IS THIS MAKING THINGS

1775
01:20:55,560 --> 01:20:57,240
EASIER BUT HONESTLY YOUR

1776
01:20:57,240 --> 01:20:57,960
DISPAYABLED STUDENTS ARE OFTEN

1777
01:20:57,960 --> 01:20:59,560
DOING A LOT MORE WORK. SOMETHING

1778
01:20:59,560 --> 01:21:01,720
I HEAR IN THE COMMUNITY. THAT

1779
01:21:01,720 --> 01:21:03,800
THE TIME, EFFORT AND MONEY

1780
01:21:03,800 --> 01:21:05,040
INVOLVED TO GET THAT

1781
01:21:05,040 --> 01:21:06,000
DOCUMENTATION FOR YOUR

1782
01:21:06,000 --> 01:21:07,600
ACCOMMODATIONS TO PUT MANY THE

1783
01:21:07,600 --> 01:21:09,360
APPROXIMATELY -- IN THE

1784
01:21:09,360 --> 01:21:10,800
APPLICATION, TO FOLLOW-UP AND

1785
01:21:10,800 --> 01:21:11,520
IMPLEMENT PROPLAYER IS

1786
01:21:11,520 --> 01:21:13,040
ADDITIONAL BURDEN ON THE

1787
01:21:13,040 --> 01:21:15,040
STUDENTS ON TOP OF WHATEVER TIME

1788
01:21:15,040 --> 01:21:16,720
AND EFFORT MANAGING THE

1789
01:21:16,720 --> 01:21:19,080
DISABILITY ITSELF.  THEN BEI

1790
01:21:19,080 --> 01:21:20,200
DON'T UNDERSTAND ALL THAT IS

1791
01:21:20,200 --> 01:21:22,440
HAVING TO WADE THROUGH ABLEISM

1792
01:21:22,440 --> 01:21:24,080
INVOLVED IN BOTH MEDICINE AND

1793
01:21:24,080 --> 01:21:26,920
SCIENTIFIC TRAINING. SO ON THE

1794
01:21:26,920 --> 01:21:29,000
MEDICAL SIDE ONE BIG OBVIOUS

1795
01:21:29,000 --> 01:21:30,200
EXPLICIT PIECES IS TECHNICAL

1796
01:21:30,200 --> 01:21:31,840
STANDARDS AN CONCEPT OF

1797
01:21:31,840 --> 01:21:33,360
UNDIFFERENTIATED GRADUATE. SO

1798
01:21:33,360 --> 01:21:34,320
TECHNICAL STANDARDS OF

1799
01:21:34,320 --> 01:21:35,560
STATEMENTS ALL MEDICAL SCHOOLS

1800
01:21:35,560 --> 01:21:39,280
ARE REQUIRED TO HAVE AND THEY

1801
01:21:39,280 --> 01:21:41,080
LAY OUT WHAT KINDS OF

1802
01:21:41,080 --> 01:21:42,400
NON-ACADEMIC REQUIREMENT THEY

1803
01:21:42,400 --> 01:21:45,720
CALL THEM FOR AFFILIATING INTO

1804
01:21:45,720 --> 01:21:48,240
MEDICAL SCHOOL. SOME CAN BE VERY

1805
01:21:48,240 --> 01:21:49,240
SPECIFIC HOW SOMEONE HAS TO BE

1806
01:21:49,240 --> 01:21:51,360
ABLE TO SEE OR HEAR OR HOW MUCH

1807
01:21:51,360 --> 01:21:52,680
THEY HAVE TO BE BIBLE TO LIFT TO

1808
01:21:52,680 --> 01:21:54,880
ENTER MEDICAL SCHOOL. AND THAT

1809
01:21:54,880 --> 01:21:58,720
IS -- CAN BE A BIG BARRIER FOR A

1810
01:21:58,720 --> 01:22:00,880
LOT OF PEOPLE, EVEN LAW SUITS

1811
01:22:00,880 --> 01:22:02,200
AROUND TECHNICAL STANDARDS IN

1812
01:22:02,200 --> 01:22:04,200
THE PAST AND WE CAN TALK ABOUT

1813
01:22:04,200 --> 01:22:05,320
THIS MORE IN DISCUSSION.  AS

1814
01:22:05,320 --> 01:22:06,880
WELL AS CONCEPT OF

1815
01:22:06,880 --> 01:22:07,920
UNDIFFERENTIATED GRADUATE, THE

1816
01:22:07,920 --> 01:22:09,000
IDEA THAT MEDICAL STUDENTS

1817
01:22:09,000 --> 01:22:11,320
SHOULD GRADUATE READY TO ENTER

1818
01:22:11,320 --> 01:22:12,640
ANY AND ALL SPECIALTIES WHEN

1819
01:22:12,640 --> 01:22:14,160
THAT IS NOT WHAT ANYONE DOES IN

1820
01:22:14,160 --> 01:22:15,520
THEIR CAREER AN SEEMED VERY

1821
01:22:15,520 --> 01:22:18,040
STRANGE TO ME THAT NO MATTER SAY

1822
01:22:18,040 --> 01:22:20,240
HOW GOOD PSYCHIATRIST SOMEONE

1823
01:22:20,240 --> 01:22:22,480
MIGHT BECOME IF THEY CAN'T PROVE

1824
01:22:22,480 --> 01:22:23,840
THEY COULD ALSO MAKE DESENT

1825
01:22:23,840 --> 01:22:26,120
SURGEON, PEOPLE WHO SUBSCRIBE TO

1826
01:22:26,120 --> 01:22:28,040
THE IDEA OF UNDIFFERENTIATED

1827
01:22:28,040 --> 01:22:29,880
GRADUATE SAY THIS PERSON

1828
01:22:29,880 --> 01:22:31,080
SHOULDN'T BE IN MEDICINE.

1829
01:22:31,080 --> 01:22:32,440
THAT'S ALSO ISSUES AROUND

1830
01:22:32,440 --> 01:22:34,520
ABLEISM MANY THE EDUCATIONAL

1831
01:22:34,520 --> 01:22:36,120
CONTENT. WE HAVE TALKED BEFORE

1832
01:22:36,120 --> 01:22:38,120
ABOUT PHYSICIANS CONSISTENTLY

1833
01:22:38,120 --> 01:22:39,120
UNDERESTIMATING QUALITY OF LIFE

1834
01:22:39,120 --> 01:22:40,800
IN DISABLED PEOPLE, THOSE

1835
01:22:40,800 --> 01:22:42,520
PHYSICIANS THEN GO ON TO TEACH

1836
01:22:42,520 --> 01:22:44,800
MEDICAL STUDENTS AND TELL THEM

1837
01:22:44,800 --> 01:22:47,720
HOW FOR DIFFERENT KINDS OF

1838
01:22:47,720 --> 01:22:49,200
DISABILITIES CAN BE OR TALK

1839
01:22:49,200 --> 01:22:49,880
ABOUT DIFFERENT CONDITIONS THAT

1840
01:22:49,880 --> 01:22:52,400
MAKE THE STUDENTS UNCOMFORTABLE

1841
01:22:52,400 --> 01:22:53,920
WITH THE WAY PEOPLE LIKE THEM

1842
01:22:53,920 --> 01:22:55,560
ARE BEING PORTRAYED.  ALSO WHEN

1843
01:22:55,560 --> 01:22:57,600
IT COMES TIME FOR LICENSURE

1844
01:22:57,600 --> 01:22:59,760
APPLICATIONS, CURRENTLY THERE'S

1845
01:22:59,760 --> 01:23:01,640
CAN BE QUITE INVASIVE QUESTIONS

1846
01:23:01,640 --> 01:23:02,880
PARTICULARLY PSYCHIATRIC HISTORY

1847
01:23:02,880 --> 01:23:04,480
PEOPLE STARTED TO CHALLENGE

1848
01:23:04,480 --> 01:23:05,680
ABOUT WHY DO WE NEED TO GIVE

1849
01:23:05,680 --> 01:23:07,760
THIS LEVEL OF DETAIL FOR THINGS

1850
01:23:07,760 --> 01:23:10,160
THAT PEOPLE OFTEN HAVE WELL

1851
01:23:10,160 --> 01:23:12,120
MANAGED TO HAVE GOTTEN THIS FAR.

1852
01:23:12,120 --> 01:23:14,160
ON THE SIDE IN SCIENCE THERE IS

1853
01:23:14,160 --> 01:23:15,360
ISSUES AROUND ACCESSIBILITY IN

1854
01:23:15,360 --> 01:23:16,560
LAB LA AND TEACHING

1855
01:23:16,560 --> 01:23:17,680
ENVIRONMENTS. STUDENTS MOVE FROM

1856
01:23:17,680 --> 01:23:18,960
THE CLASSROOM TO THE LAB

1857
01:23:18,960 --> 01:23:21,680
SETTING. THERE'S A LOT OF

1858
01:23:21,680 --> 01:23:22,760
DIFFERENT DEMANDS PHYSICAL

1859
01:23:22,760 --> 01:23:26,160
SENSORY AND OTHER ASPECTS THAT

1860
01:23:26,160 --> 01:23:27,520
PEOPLE SOMETIMES GET QUESTION OH

1861
01:23:27,520 --> 01:23:28,720
WOULD IT BE SAFE TO BE IN THE

1862
01:23:28,720 --> 01:23:31,640
LAB WITHOUT REALLY STARTING TO

1863
01:23:31,640 --> 01:23:32,640
THINK ABOUT WHAT WOULD WE NEED

1864
01:23:32,640 --> 01:23:34,320
TO DO TO MAKE THAT HAPPEN. A LOT

1865
01:23:34,320 --> 01:23:35,880
MORE THINGS ARE POSSIBLE TO

1866
01:23:35,880 --> 01:23:37,960
PEOPLE SOMETIMES THINK. 

1867
01:23:37,960 --> 01:23:38,760
ATTENDING IN PERSON CONFERENCE

1868
01:23:38,760 --> 01:23:42,040
IS A BIG PART OF GETTING TO KNOW

1869
01:23:42,040 --> 01:23:43,440
PEOPLE NETWORKING AND LEARNING

1870
01:23:43,440 --> 01:23:44,640
FROM FIELD AND IN PERSON

1871
01:23:44,640 --> 01:23:46,160
CONFERENCES HAVE ACCESSIBILITY

1872
01:23:46,160 --> 01:23:47,560
CONCERNS WHETHER THAT IS ABOUT

1873
01:23:47,560 --> 01:23:49,840
THE TRAVEL, THE VENUES, WHETHER

1874
01:23:49,840 --> 01:23:51,880
ABOUT THE CROWDS OR THE LIGHTS

1875
01:23:51,880 --> 01:23:54,360
OR THE SOUNDS OR AS WE HAVE SEEN

1876
01:23:54,360 --> 01:23:56,920
LAST FEW YEARS, THE POTENTIAL

1877
01:23:56,920 --> 01:24:00,880
EXPOSURE TO INFECTIOUS DISEASE.

1878
01:24:00,880 --> 01:24:03,120
THEN ABLEIST ATTITUDES IN THE

1879
01:24:03,120 --> 01:24:04,000
SCIENTIFIC SPACE ABOUT WHAT

1880
01:24:04,000 --> 01:24:05,120
KINDS OF PEOPLE CAN BE IN

1881
01:24:05,120 --> 01:24:08,360
SCIENCE AS WELL AS THE WAY

1882
01:24:08,360 --> 01:24:09,560
DIFFERENT POPULATIONS TALK ABOUT

1883
01:24:09,560 --> 01:24:11,880
AS SUBJECTS OF SCIENCE. BUT

1884
01:24:11,880 --> 01:24:13,320
THERE IS A NEW GENERATION COMING

1885
01:24:13,320 --> 01:24:14,680
UP TO THIS POINT AND IT IS

1886
01:24:14,680 --> 01:24:15,840
REALLY EXCITING PARTICULARLY THE

1887
01:24:15,840 --> 01:24:18,360
LAST FEW YEARS BECAUSE THERE MAY

1888
01:24:18,360 --> 01:24:21,360
ONLY BE SO MANY OPENLY DISABLED

1889
01:24:21,360 --> 01:24:22,840
MEDICAL GRADUATE STUDENTS IN ANY

1890
01:24:22,840 --> 01:24:23,800
PROGRAM OR INSTITUTION BUT AS

1891
01:24:23,800 --> 01:24:25,720
THINGS ARE VIRTUAL THE LAST FEW

1892
01:24:25,720 --> 01:24:27,520
YEARS IT HAS BECOME MUCH EASIER

1893
01:24:27,520 --> 01:24:30,240
TO FIND EACH OTHER ACROSS THE

1894
01:24:30,240 --> 01:24:31,480
COUNTRY AND FORM ORGANIZATIONS

1895
01:24:31,480 --> 01:24:32,400
LIKE MEDICAL STUDENTS WITH

1896
01:24:32,400 --> 01:24:35,560
DISABILITY AND CHRONIC ILLNESS,

1897
01:24:35,560 --> 01:24:37,840
DISABILITY IN MEDICINE MUTUAL

1898
01:24:37,840 --> 01:24:38,640
MENTORSHIP PROGRAM ON THE

1899
01:24:38,640 --> 01:24:39,560
MEDICAL SIDE AND SCIENCE

1900
01:24:39,560 --> 01:24:41,240
ORGANIZATIONS LIKE DISAGE ABLED

1901
01:24:41,240 --> 01:24:43,480
AN STEM OR DISABILITY ADVOCACY

1902
01:24:43,480 --> 01:24:46,040
RESEARCH NETWORK FOR PSYCHOLOGY

1903
01:24:46,040 --> 01:24:48,440
TO SHOW THIS IS REALLY STARTING

1904
01:24:48,440 --> 01:24:50,680
TO GROW, STUDENTS ARE STARTING

1905
01:24:50,680 --> 01:24:52,360
TO BE ABLE TO PUSH FOR CHANGE. I

1906
01:24:52,360 --> 01:24:54,000
WANT TO HIGHLIGHT WITH

1907
01:24:54,000 --> 01:24:55,040
APPROPRIATE SUPPORT DISABLED

1908
01:24:55,040 --> 01:24:59,360
STUDENTS CAN SUCK SUCCE SUCCEEDN

1909
01:24:59,360 --> 01:25:01,800
THEIR ACCESS NEEDS ARE MET HAVE

1910
01:25:01,800 --> 01:25:03,120
DEPRESSION AND MEDICAL ERROR

1911
01:25:03,120 --> 01:25:04,920
RATES SIMILAR TO NON-DISABLED

1912
01:25:04,920 --> 01:25:06,480
PEERS.  AS WE TALKED BEFORE

1913
01:25:06,480 --> 01:25:07,960
ABOUT THE SOCIAL MODEL OF

1914
01:25:07,960 --> 01:25:09,160
DISABILITY WHEN WE SAY

1915
01:25:09,160 --> 01:25:10,640
NON-DISABLED PEERS IN A WAY THAT

1916
01:25:10,640 --> 01:25:14,360
IS SAYING THEIR PEERS WHO CAN

1917
01:25:14,360 --> 01:25:16,000
ACCESS NEEDS ARE BEING MET BY

1918
01:25:16,000 --> 01:25:17,560
DEFAULT. SO I THINK AT THIS

1919
01:25:17,560 --> 01:25:19,800
POINT WANT TO POINT IT IS HIGHLY

1920
01:25:19,800 --> 01:25:21,240
RECOGNIZED LIVED EXPERTISE. IN

1921
01:25:21,240 --> 01:25:22,680
TWO WAYS I MEAN IT. ONE TO

1922
01:25:22,680 --> 01:25:24,720
RECOGNIZE THE EXPERTISE DISABLED

1923
01:25:24,720 --> 01:25:26,200
MEDICAL AND GRADUATE STUDENTS

1924
01:25:26,200 --> 01:25:27,640
BRING TO THEIR FIELDS, THE

1925
01:25:27,640 --> 01:25:28,560
THINGS THEY LEARNED THROUGH

1926
01:25:28,560 --> 01:25:29,960
THEIR OWN LIVES THAT WILL IMPACT

1927
01:25:29,960 --> 01:25:32,080
AND IMPROVE THE WAYS THAT THEY

1928
01:25:32,080 --> 01:25:33,200
DO SCIENCE AND THEY TAKE CARE OF

1929
01:25:33,200 --> 01:25:36,200
PATIENTS.  BUT ALSO IN THE SENSE

1930
01:25:36,200 --> 01:25:37,800
AND THIS IS PART MY CITATION

1931
01:25:37,800 --> 01:25:39,800
REFERS TO, THERE IS AN ARTICLE

1932
01:25:39,800 --> 01:25:42,440
BY A LEGAL SCHOLAR CATHERINE

1933
01:25:42,440 --> 01:25:44,760
MACK FAR LANE A FEW YEARS BIG

1934
01:25:44,760 --> 01:25:46,480
ARGUING THAT THE LEVEL OF

1935
01:25:46,480 --> 01:25:47,480
DOCUMENTATION AND MEDICAL

1936
01:25:47,480 --> 01:25:49,080
INVOLVEMENT THAT WE CURRENTLY

1937
01:25:49,080 --> 01:25:50,440
EXPECT IN THE ACCOMMODATIONS

1938
01:25:50,440 --> 01:25:52,320
PROCESS IS NOT REALLY IN LINE

1939
01:25:52,320 --> 01:25:53,040
WITH THE LETTER OR THE SPIRIT OF

1940
01:25:53,040 --> 01:25:57,240
THE ADA. AND THAT WE MAY BE

1941
01:25:57,240 --> 01:26:00,040
BETTER OFF TAKING A LEAF OUT OF

1942
01:26:00,040 --> 01:26:01,160
HOW WE HANDLE THESE

1943
01:26:01,160 --> 01:26:01,760
ACCOMMODATIONS AND LISTENING TO

1944
01:26:01,760 --> 01:26:03,280
PEOPLE WHEN THEY SAY WHAT THEY

1945
01:26:03,280 --> 01:26:04,280
NEED AND NOT IMMEDIATELY

1946
01:26:04,280 --> 01:26:07,440
ASSUMING THAT WE NEED THIS

1947
01:26:07,440 --> 01:26:10,000
VERIFIED BY OUTSIDE PERSON WHO

1948
01:26:10,000 --> 01:26:11,880
OFTEN DOESN'T AS I HAVE SEEN IN

1949
01:26:11,880 --> 01:26:13,280
HEALTHCARE WE DON'T REALLY LEARN

1950
01:26:13,280 --> 01:26:17,240
MUCH ABOUT WHAT KINDS OF

1951
01:26:17,240 --> 01:26:18,160
ACCOMMODATIONS SOMEBODY NEEDS

1952
01:26:18,160 --> 01:26:19,360
FROM DISABILITY BUT THE PERSON

1953
01:26:19,360 --> 01:26:21,000
WITH DISABILITY TYPICALLY DOES

1954
01:26:21,000 --> 01:26:22,680
HAVE DECENT IDEA OF WHAT THEIR

1955
01:26:22,680 --> 01:26:24,960
ACCESS NEEDS ARE OR AT VERY

1956
01:26:24,960 --> 01:26:26,400
LEAST WHEN GIVEN SUPPORT FROM

1957
01:26:26,400 --> 01:26:27,520
THEIR SCHOOL OR PROGRAM TO FIND

1958
01:26:27,520 --> 01:26:29,080
OUT WHAT THE DEMANDS WILL BE IN

1959
01:26:29,080 --> 01:26:32,720
THEIR UPCOMING STAGE OF THEIR

1960
01:26:32,720 --> 01:26:35,080
CAREER, CAN WORK TO FIGURE OUT

1961
01:26:35,080 --> 01:26:37,200
WHAT THOSE ENTAIL. SO I HAVE A

1962
01:26:37,200 --> 01:26:40,440
LOT OF REFERENCES HERE, YOU HAVE

1963
01:26:40,440 --> 01:26:41,640
ACCESS TO SLIDES AFTERWARDS TO

1964
01:26:41,640 --> 01:26:43,200
LOOK AT THIS WORK. SO THANK YOU

1965
01:26:43,200 --> 01:26:45,760
AND THAT IS THE END OF MY

1966
01:26:45,760 --> 01:26:56,120
SECTION HERE TODAY. 

1967
01:27:08,080 --> 01:27:09,880
>>I'M GOING TO BRING UP
MY

1968
01:27:09,880 --> 01:27:12,160
SLIDES, THANK YOU VERY MUCH. BUT

1969
01:27:12,160 --> 01:27:14,360
BEFORE WHAT I BELIEVE IS KIND OF

1970
01:27:14,360 --> 01:27:15,720
A TWIN PRESENTATION OR LEAD IN

1971
01:27:15,720 --> 01:27:17,400
KIND OF TO WHAT I HAVE BEEN

1972
01:27:17,400 --> 01:27:19,400
TALKING ABOUT. LET ME JUST BRING

1973
01:27:19,400 --> 01:27:29,920
UP MY SLIDES QUICKLY FOR YOU.  

1974
01:27:37,840 --> 01:27:41,760
SO MY NAME IS DIANA CEJAS, HI

1975
01:27:41,760 --> 01:27:43,560
PRONOUNS ARE SHE HER HERS, BLACK

1976
01:27:43,560 --> 01:27:45,800
WOMAN WITH CURLY NATURAL HAIR,

1977
01:27:45,800 --> 01:27:49,440
WHO IS SITTING IN FRONT OF A

1978
01:27:49,440 --> 01:27:53,400
VERY BLANK WALL IN A ROOM. WHO

1979
01:27:53,400 --> 01:27:56,880
IS ALSO WEARING A KIND OF BLANK

1980
01:27:56,880 --> 01:27:58,680
BEIGE KIND OF SWEATER. I'M AS

1981
01:27:58,680 --> 01:28:00,960
WAS MENTIONED PEDIATRIC

1982
01:28:00,960 --> 01:28:01,760
NEUROLOGIST AT THE UNIVERSITY OF

1983
01:28:01,760 --> 01:28:03,520
NORTH CAROLINA CHAPEL HILL AND

1984
01:28:03,520 --> 01:28:06,160
PRETTY MUCH ALL MY WORK

1985
01:28:06,160 --> 01:28:11,160
INCLUDING RESEARCH AND ADVOCACY

1986
01:28:11,160 --> 01:28:13,240
IS FOR YOUNG DISABLED PEOPLE

1987
01:28:13,240 --> 01:28:14,120
PARTICULARLY YOUNG DISABLED

1988
01:28:14,120 --> 01:28:16,000
PEOPLE OF COLOR. ONE REASON THAT

1989
01:28:16,000 --> 01:28:17,640
IS IMPORTANT TO ME PERSONALLY

1990
01:28:17,640 --> 01:28:19,400
AND PROFESSIONALLY IS BECAUSE OF

1991
01:28:19,400 --> 01:28:21,000
MY LIVED EXPERIENCE AS A

1992
01:28:21,000 --> 01:28:22,600
DISABLED PHYSICIAN. I USE THE

1993
01:28:22,600 --> 01:28:25,680
TERM DISABLED AND TERMS

1994
01:28:25,680 --> 01:28:26,960
DISABILITY INTENTIONALLY BECAUSE

1995
01:28:26,960 --> 01:28:28,160
AS YOU MIGHT HAVE BEEN ABLE TO

1996
01:28:28,160 --> 01:28:30,200
INFER FROM THE PREVIOUS

1997
01:28:30,200 --> 01:28:31,240
PRESENTATION, IT IS VERY

1998
01:28:31,240 --> 01:28:32,640
UNCOMMON TO BE OPENLY DISABLED

1999
01:28:32,640 --> 01:28:35,760
IN MEDICINE. SO ONE OF THE

2000
01:28:35,760 --> 01:28:37,080
THINGS THAT I WOULD LOU I CAN TO

2001
01:28:37,080 --> 01:28:39,200
TALK ABOUT TODAY TO KIND OF KEEP

2002
01:28:39,200 --> 01:28:42,840
THIS CONVERSATION GOING IS ABOUT

2003
01:28:42,840 --> 01:28:44,800
EXPERIENCES THAT WE HAVE AS

2004
01:28:44,800 --> 01:28:46,240
DISABLED FACULTY, ALSO WHAT KIND

2005
01:28:46,240 --> 01:28:49,720
OF REALLY EDUCATION OUR DISABLED

2006
01:28:49,720 --> 01:28:51,040
TRAINEES ARE GETTING ONCE IN

2007
01:28:51,040 --> 01:28:52,800
MEDICAL SCHOOL, RESIDENCY,

2008
01:28:52,800 --> 01:28:56,040
FELLOWSHIP AND EVEN BEYOND. SO

2009
01:28:56,040 --> 01:28:58,560
BEFORE WE GET THERE, LET'S TALK

2010
01:28:58,560 --> 01:29:00,440
ABOUT LANDSCAPE. WHAT IS GOING

2011
01:29:00,440 --> 01:29:02,640
ON, WHAT IS THE REALITY FOR

2012
01:29:02,640 --> 01:29:06,200
DOCTORS WITH DISABILITIES? ON

2013
01:29:06,200 --> 01:29:07,680
THE ONE HAND THOSE LAST COUPLE

2014
01:29:07,680 --> 01:29:09,400
OF SLIDES IN THE PREVIOUS

2015
01:29:09,400 --> 01:29:10,280
PRESENTATION WERE HEARTENING

2016
01:29:10,280 --> 01:29:14,640
BECAUSE IT IS AMAZING TO SEE WE

2017
01:29:14,640 --> 01:29:15,920
HAVE MORE DISABLED PEOPLE

2018
01:29:15,920 --> 01:29:17,280
GETTING INTO MEDICINE DOING THIS

2019
01:29:17,280 --> 01:29:18,760
WORK AND MORE TRAINEES COMING IN

2020
01:29:18,760 --> 01:29:20,160
AND ACTIVELY WANTING TO LEARN

2021
01:29:20,160 --> 01:29:21,120
MORE ABOUT DISABILITY. AT THE

2022
01:29:21,120 --> 01:29:22,080
SAME TIME YOU CAN SEE THE

2023
01:29:22,080 --> 01:29:25,160
NUMBERS HERE THAT ARE ON THIS

2024
01:29:25,160 --> 01:29:25,800
SLIDE. WHICH I BELIEVE ARE SOME

2025
01:29:25,800 --> 01:29:27,720
OF THE MORE RECENT DATA THAT WE

2026
01:29:27,720 --> 01:29:30,240
HAVE ABOUT 3.1% PRACTICING

2027
01:29:30,240 --> 01:29:33,800
PHYSICIANS AND 4.6% OF STUDENTS

2028
01:29:33,800 --> 01:29:34,800
MEDICAL STUDENTS IN THE UNITED

2029
01:29:34,800 --> 01:29:37,680
STATES HAVE A DISABILITIES OF

2030
01:29:37,680 --> 01:29:38,640
SOME KIND. YOU CAN COMPARE THAT

2031
01:29:38,640 --> 01:29:41,880
WITH THE 20 TO 25% OF ADULTS IN

2032
01:29:41,880 --> 01:29:43,680
THE UNITED STATES WITH SOME FORM

2033
01:29:43,680 --> 01:29:46,080
OF DISABILITY. TAKE A LOOK AT

2034
01:29:46,080 --> 01:29:48,520
THESE NUMBERS AND WONDER WHY IS

2035
01:29:48,520 --> 01:29:50,800
IT THERE IS SO FEW DISABLED

2036
01:29:50,800 --> 01:29:53,040
PHYSICIANS AND DISABLED MEDICAL

2037
01:29:53,040 --> 01:29:56,280
STUDENTS STUDENTS IN TRAINING? 

2038
01:29:56,280 --> 01:29:57,120
WE CERTAINLY HAVE A LOT OF

2039
01:29:57,120 --> 01:29:58,360
REASONS FOR THAT. NUMBER ONE, WE

2040
01:29:58,360 --> 01:30:01,000
CAN THINK ABOUT THE WAY ABLEISM

2041
01:30:01,000 --> 01:30:03,000
AFFECTS MEDICAL EDUCATION, THE

2042
01:30:03,000 --> 01:30:05,440
WAY THAT ABLEISM AFFECTS THE

2043
01:30:05,440 --> 01:30:07,680
PIPELINE INTO MEDICINE AND THE

2044
01:30:07,680 --> 01:30:08,760
WAY ABLEISM AFFECTS THE

2045
01:30:08,760 --> 01:30:10,600
REALITIES FOR PEOPLE ONCE THEY

2046
01:30:10,600 --> 01:30:14,680
ARE ABLE TO GET INTO TRAINING

2047
01:30:14,680 --> 01:30:18,400
AND FACULTY POSITIONS AS WELL. 

2048
01:30:18,400 --> 01:30:20,240
WE HAVE TO KNOW ABLEISM DOESN'T

2049
01:30:20,240 --> 01:30:21,840
JUST AFFECT OUR PATIENTS, ALSO

2050
01:30:21,840 --> 01:30:23,880
AFFECTS PHYSICIANS.  AND ONE OF

2051
01:30:23,880 --> 01:30:24,760
THE OTHER THINGS I WANT TO

2052
01:30:24,760 --> 01:30:26,520
HIGHLIGHT WHICH WE ARE TALKING

2053
01:30:26,520 --> 01:30:28,320
ABOUT IN THE Q&A SECTION AND

2054
01:30:28,320 --> 01:30:32,120
DISCUSSION SECTION IS THE FACT

2055
01:30:32,120 --> 01:30:34,040
THAT THESE NUMBERS WHEN I LOOK I

2056
01:30:34,040 --> 01:30:37,680
HAVE TO TAKE INTO ACCOUNT THAT

2057
01:30:37,680 --> 01:30:38,720
THEY REFLECT NUMBER OF

2058
01:30:38,720 --> 01:30:39,680
PHYSICIANS AND MEDICAL STUDENTS

2059
01:30:39,680 --> 01:30:42,480
WHO FEEL COMFORTABLE DISCLOSING

2060
01:30:42,480 --> 01:30:44,960
TO RESEARCHERS THEY HAVE A

2061
01:30:44,960 --> 01:30:45,800
DISABILITY OF SOME KIND. OF

2062
01:30:45,800 --> 01:30:47,480
COURSE WE ARE TALKING MORE ABOUT

2063
01:30:47,480 --> 01:30:49,480
DISCLOSURE LATER BUT DISCLOSURE

2064
01:30:49,480 --> 01:30:50,720
DISABILITY AND MEDICINE IS

2065
01:30:50,720 --> 01:30:53,760
SOMETHING THAT IS EXTREMELY

2066
01:30:53,760 --> 01:30:56,240
RISKY AND ALSO EXTREMELY

2067
01:30:56,240 --> 01:30:58,360
PERSONAL. AND I ALSO CONTRIBUTES

2068
01:30:58,360 --> 01:31:00,000
TO THE FACT THAT OF COURSE I

2069
01:31:00,000 --> 01:31:01,480
KNOW DISABLED PHYSICIANS WHO

2070
01:31:01,480 --> 01:31:03,440
ABSOLUTELY NEVER DISCLOSE THEIR

2071
01:31:03,440 --> 01:31:04,320
DISABILITY BECAUSE OF SOME OF

2072
01:31:04,320 --> 01:31:08,480
THE CULTURAL AND OTHER RISKS

2073
01:31:08,480 --> 01:31:11,760
THAT ARE AT PLAY. SO SOME OF THE

2074
01:31:11,760 --> 01:31:13,440
THINGS RELATED TO CULTURAL

2075
01:31:13,440 --> 01:31:14,640
EXPECTATIONS FOR PHYSICIANS IS

2076
01:31:14,640 --> 01:31:16,280
JUST THAT WE ARE KIND OF

2077
01:31:16,280 --> 01:31:17,960
EXPECTED TO BE SUPER HUMAN. YOU

2078
01:31:17,960 --> 01:31:20,560
ARE EXPECTED TO BE ABLE TO MAKE

2079
01:31:20,560 --> 01:31:22,200
HIGH LEVEL DECISIONS ABOUT

2080
01:31:22,200 --> 01:31:23,360
SOMEBODY'S LIFE THEIR HEALTH

2081
01:31:23,360 --> 01:31:25,760
WHEN YOU YOURSELF MAYBE HAVEN'T

2082
01:31:25,760 --> 01:31:26,920
EXCELLENT IN 36 HOURS, YOU

2083
01:31:26,920 --> 01:31:29,520
HAVEN'T EATEN, MAYBE NOT BEEN

2084
01:31:29,520 --> 01:31:33,200
ABLE TO TAKE CARE OF YOURSELF

2085
01:31:33,200 --> 01:31:34,960
AND HEALTHCARE NEEDS. BUT YOU

2086
01:31:34,960 --> 01:31:36,960
ARE SUPPOSED TO BE OPERATING ON

2087
01:31:36,960 --> 01:31:38,560
THE HIGHEST POSSIBLE LEVEL

2088
01:31:38,560 --> 01:31:39,960
PHYSICALLY MENTALLY EMOTIONALLY,

2089
01:31:39,960 --> 01:31:41,720
WHAT HAVE YOU. AND YOU CAN

2090
01:31:41,720 --> 01:31:42,640
IMAGINE LIKE ANYBODY WHO DOESN'T

2091
01:31:42,640 --> 01:31:44,440
NECESSARILY FALL INTO THAT

2092
01:31:44,440 --> 01:31:46,120
STANDARD, IS SEEN AS LESS THAN.

2093
01:31:46,120 --> 01:31:48,080
SO YOU MIGHT SEE A PERSON WHO IS

2094
01:31:48,080 --> 01:31:49,160
DISABLED WITH SOME KIND OF

2095
01:31:49,160 --> 01:31:55,080
CHRONIC ILLNESS OR SOME OTHER

2096
01:31:55,080 --> 01:31:56,880
NEEDS, NOT SEEN AS TEEN PLAYER

2097
01:31:56,880 --> 01:31:58,400
OR FAILING IN SOME WAYS SIMPLY

2098
01:31:58,400 --> 01:31:59,720
BECAUSE THEY ARE NOT ABLE TO

2099
01:31:59,720 --> 01:32:01,920
LIVE UP TO WHAT IS HONESTLY AN

2100
01:32:01,920 --> 01:32:03,920
UNATTAINABLE STANDARD FOR

2101
01:32:03,920 --> 01:32:08,640
EVERYBODY IN MEDICINE.  SO WHAT

2102
01:32:08,640 --> 01:32:11,360
KIND OF THINGS DISABLED DOCTORS

2103
01:32:11,360 --> 01:32:12,840
AND (INAUDIBLE) EXPERIENCE ONCE

2104
01:32:12,840 --> 01:32:14,800
IN PRACTICE OR TRAINING

2105
01:32:14,800 --> 01:32:16,000
PROGRAMS.  ONE OF THE BIGGEST

2106
01:32:16,000 --> 01:32:17,800
ISSUES WE SEE WHICH YOU HAVE

2107
01:32:17,800 --> 01:32:20,240
HEARD A LITTLE BIT SO FAR IS

2108
01:32:20,240 --> 01:32:23,440
BURN-OUT. SO GETTING INTO

2109
01:32:23,440 --> 01:32:26,520
PRACTICE BUT NOT BEING ABLE TO

2110
01:32:26,520 --> 01:32:29,400
CONTINUE BECAUSE OF EMOTIONAL

2111
01:32:29,400 --> 01:32:30,280
DISTRESS, BECAUSE PHYSICALLY NOT

2112
01:32:30,280 --> 01:32:32,280
ABLE TO DO IT BECAUSE YOU START

2113
01:32:32,280 --> 01:32:34,160
TO HAVE ALL KINDS OF SYMPTOMS

2114
01:32:34,160 --> 01:32:36,920
THAT ARE RELATED TO THE THIS

2115
01:32:36,920 --> 01:32:39,520
IDEA OF NOT BEING ABLE TO KEEP

2116
01:32:39,520 --> 01:32:41,760
GOING AND PHYSICALLY BURNING OUT

2117
01:32:41,760 --> 01:32:44,040
OR MENTALLY BURNING OUT AFTER

2118
01:32:44,040 --> 01:32:47,000
SOMETIME AND HAVING TO EITHER

2119
01:32:47,000 --> 01:32:49,640
TAKE TIME OFF OR LEAVE THE

2120
01:32:49,640 --> 01:32:50,880
PRACTICE OR CHANGE WHATEVER

2121
01:32:50,880 --> 01:32:53,360
GOING ON WITH YOUR PRACTICE AS A

2122
01:32:53,360 --> 01:32:55,840
RESULT. OTHER THINGS DISABLED

2123
01:32:55,840 --> 01:32:57,960
PHYSICIANS AND EXPERIENCE ARE

2124
01:32:57,960 --> 01:32:58,640
LIMITED OPPORTUNITIES

2125
01:32:58,640 --> 01:33:01,800
PARTICULARLY FOR MENTORSHIP

2126
01:33:01,800 --> 01:33:02,920
SPONSORSHIP PROMOTION, IF YOU

2127
01:33:02,920 --> 01:33:05,320
THINK ABOUT IT, IF YOU HAVE

2128
01:33:05,320 --> 01:33:06,760
FEWER OPENLY DISABLED PEOPLE

2129
01:33:06,760 --> 01:33:08,120
THAT YOU CAN WORK WITH YOU CAN

2130
01:33:08,120 --> 01:33:09,520
COLLABORATE WITH, OR WHO

2131
01:33:09,520 --> 01:33:10,760
UNDERSTAND WHAT YOU ARE GOING

2132
01:33:10,760 --> 01:33:12,120
THROUGH, TO BE ABLE TO PROVIDE

2133
01:33:12,120 --> 01:33:13,560
SUPPORT TO YOU, OF COURSE THAT

2134
01:33:13,560 --> 01:33:14,960
IS GOING TO AFFECT THE WAY YOU

2135
01:33:14,960 --> 01:33:17,360
ARE ABLE TO PRACTICE AND AFFECT

2136
01:33:17,360 --> 01:33:21,200
YOUR TRAINING AND YOUR CAREER

2137
01:33:21,200 --> 01:33:22,160
TRAJECTORY. MICRO AND MACRO

2138
01:33:22,160 --> 01:33:23,760
AGGRESSIONS RELATED TO

2139
01:33:23,760 --> 01:33:25,120
DISABILITY ABLEISM ARE OTHER

2140
01:33:25,120 --> 01:33:26,400
THINGS DISABLED DOCTORS

2141
01:33:26,400 --> 01:33:29,040
EXPERIENCE, THESE CAN BE COMING

2142
01:33:29,040 --> 01:33:31,760
FROM EITHER SOMEONE WHO IS ABOVE

2143
01:33:31,760 --> 01:33:33,360
THE KIND OF CHAIN OF COMMAND

2144
01:33:33,360 --> 01:33:36,480
THAN YOU, A BOSS, OR MAYBE

2145
01:33:36,480 --> 01:33:37,680
SECTION CHIEF, SOMETHING OF THAT

2146
01:33:37,680 --> 01:33:39,960
NATURE, IT CAN COME FROM YOUR

2147
01:33:39,960 --> 01:33:41,520
ATTENDING IF YOU ARE A DISABLED

2148
01:33:41,520 --> 01:33:45,360
TRAINEE. CAN ALSO COME FROM

2149
01:33:45,360 --> 01:33:47,240
PATIENTS, I WON'T GET INTO THIS

2150
01:33:47,240 --> 01:33:48,280
TALK BUT IT IS SOMETHING PEOPLE

2151
01:33:48,280 --> 01:33:53,240
DEAL WITH. ALL THESE LEAD TO

2152
01:33:53,240 --> 01:33:53,880
DECREASED JOB SATISFACTION, OF

2153
01:33:53,880 --> 01:33:57,520
COURSE ALL THAT CAN TART TO LEAD

2154
01:33:57,520 --> 01:33:58,920
TO START TO LEAD TO PEOPLE NOT

2155
01:33:58,920 --> 01:34:00,360
BEING ABLE TO OR WANTING TO

2156
01:34:00,360 --> 01:34:02,200
COMPLETE TRAINING OR NOT FEELING

2157
01:34:02,200 --> 01:34:04,760
SAFE IN THE PROGRAMS, MAYBE

2158
01:34:04,760 --> 01:34:06,720
SWITCHING TO A DIFFERENT

2159
01:34:06,720 --> 01:34:09,520
INSTITUTION OR MAYBE LIVING THE

2160
01:34:09,520 --> 01:34:12,640
FIELD ALL TOGETHER. WE KNOW FOR

2161
01:34:12,640 --> 01:34:15,920
EXAMPLE SOME DISABLED MELDCAL

2162
01:34:15,920 --> 01:34:18,120
STUDENTS CITED DISCRIMINATION

2163
01:34:18,120 --> 01:34:20,120
PREJUDICE FEELINGS OF ISOLATION

2164
01:34:20,120 --> 01:34:21,720
AND DIFFERENT CULTURAL

2165
01:34:21,720 --> 01:34:22,960
EXPECTATIONS NEGATIVELY IMPACT

2166
01:34:22,960 --> 01:34:24,080
OVERALL MEDICAL EXPERIENCE AND

2167
01:34:24,080 --> 01:34:25,080
THEN YOU HAVE TO TAKE A LOOK

2168
01:34:25,080 --> 01:34:27,720
ANOTHER THE FACT THAT THEY ARE

2169
01:34:27,720 --> 01:34:29,480
LIKELY NOT JUST DEALING WITH

2170
01:34:29,480 --> 01:34:32,000
ABLEISM BUT DEALING WITH

2171
01:34:32,000 --> 01:34:33,080
INTERSECTIONAL KINDS OF

2172
01:34:33,080 --> 01:34:33,880
DISCRIMINATION. SO EVERYTHING

2173
01:34:33,880 --> 01:34:36,920
YOU ARE SEEING HERE CAN CAN BE

2174
01:34:36,920 --> 01:34:37,920
COMPOUNDED BY THE FACT THAT OUR

2175
01:34:37,920 --> 01:34:40,360
PHYSICIANS IS OF COLOR MIGHT

2176
01:34:40,360 --> 01:34:44,120
EXPERIENCING RACIALIZED KIND OF

2177
01:34:44,120 --> 01:34:48,880
ABLEISM, OF COURSE GENDER

2178
01:34:48,880 --> 01:34:49,920
DIFFERENCES AND DISCRIMINATION

2179
01:34:49,920 --> 01:34:51,120
AND ALL THESE THINGS THAT MAKE

2180
01:34:51,120 --> 01:34:55,400
EVERYTHING SO, SO MUCH WORSE. 

2181
01:34:55,400 --> 01:34:57,400
OTHER ISSUES WE SEE FOR DISABLED

2182
01:34:57,400 --> 01:34:59,760
PEOPLE IN MEDICINE, WE HAVE

2183
01:34:59,760 --> 01:35:01,120
NOTICE DISABILITY IS HEAVILY

2184
01:35:01,120 --> 01:35:02,680
STIGMATIZED. GOING BACK TO SOME

2185
01:35:02,680 --> 01:35:05,920
OF THOSE CULTURAL NORMS THAT WE

2186
01:35:05,920 --> 01:35:06,560
HAVE WITHIN THE HEALTHCARE

2187
01:35:06,560 --> 01:35:08,800
FIELD.  THINGS THAT DOCTORS ARE

2188
01:35:08,800 --> 01:35:10,240
EXPECTED TO DO AND THINK AND BE

2189
01:35:10,240 --> 01:35:14,600
AND LOOK LIKE. AND KNOWING THAT,

2190
01:35:14,600 --> 01:35:16,200
MEANS THAT OF COURSE AGAIN

2191
01:35:16,200 --> 01:35:18,440
ANYBODY WHO DOESEN CONFORM TO

2192
01:35:18,440 --> 01:35:20,160
THAT PARTICULAR NORM HOE DOESN'T

2193
01:35:20,160 --> 01:35:23,080
CONFORM IS NOT OPERATING AT THE

2194
01:35:23,080 --> 01:35:24,920
LEVEL THAT PERCEPTION THEY ARE

2195
01:35:24,920 --> 01:35:27,320
NOT ACTING AT LEVEL THEY ARE

2196
01:35:27,320 --> 01:35:29,120
EXPECTED TO BE. AGAIN IF YOU

2197
01:35:29,120 --> 01:35:30,760
HAVE FEWER DISABLED DOCTORS

2198
01:35:30,760 --> 01:35:32,240
FEWER OPPORTUNITIES FOR DISABLED

2199
01:35:32,240 --> 01:35:35,360
TRAINEES FEWER OPPORTUNITIES FOR

2200
01:35:35,360 --> 01:35:37,800
COLLABORATION BETWEEN OTHER

2201
01:35:37,800 --> 01:35:40,400
KINDS OF OR DISABLED AND

2202
01:35:40,400 --> 01:35:44,640
NON-DISABLED PEERS, FOR FEWER

2203
01:35:44,640 --> 01:35:45,480
OPPORTUNITIES FOR CONNECTION

2204
01:35:45,480 --> 01:35:46,680
WITH PATIENTS, I THINK ONE OF

2205
01:35:46,680 --> 01:35:48,280
THE THINGS THAT WAS ALSO NICELY

2206
01:35:48,280 --> 01:35:50,480
HIGHLIGHTED IN THE PRECEDING

2207
01:35:50,480 --> 01:35:52,280
TALK WAS THAT DISABLED

2208
01:35:52,280 --> 01:35:54,520
CLINICIANS AND TRAINEES BRING A

2209
01:35:54,520 --> 01:35:57,080
VERY INTERESTING PERSPECTIVE TO

2210
01:35:57,080 --> 01:35:59,040
PATIENT CARE, WE KNOW THAT TO

2211
01:35:59,040 --> 01:36:01,200
PUT IT SIMPLY MARGINALIZED

2212
01:36:01,200 --> 01:36:02,560
DOCTORS ARE GOOD FOR

2213
01:36:02,560 --> 01:36:04,120
MARGINALIZED PATIENTS.  DISABLED

2214
01:36:04,120 --> 01:36:05,440
DOCTORS GOOD FOR DISABLED

2215
01:36:05,440 --> 01:36:07,600
PATIENTS.  WE CAN UNDERSTAND

2216
01:36:07,600 --> 01:36:08,800
PERSPECTIVES THE WAY

2217
01:36:08,800 --> 01:36:09,720
NON-DISABLED KIDS CAN'T AND

2218
01:36:09,720 --> 01:36:11,480
RELATE TO OUR DISABLED PATIENTS

2219
01:36:11,480 --> 01:36:13,600
ALSO IN A WAY THAT ARE

2220
01:36:13,600 --> 01:36:16,360
NON-STABLE PEERS CAN'T. THAT CAN

2221
01:36:16,360 --> 01:36:19,160
ALSO EFFECT BOTH CARE PEOPLE

2222
01:36:19,160 --> 01:36:20,840
RECEIVE AND DOCTOR PATIENT

2223
01:36:20,840 --> 01:36:22,880
RELATIONSHIP AND ALSO ULTIMATELY

2224
01:36:22,880 --> 01:36:25,280
AFFECT THE PATIENT HEALTHCARE

2225
01:36:25,280 --> 01:36:26,880
OUTCOMES. AS YOU THINK ABOUT

2226
01:36:26,880 --> 01:36:28,000
THIS YOU CAN START TO WONDER

2227
01:36:28,000 --> 01:36:30,320
WHAT DOES NOT HAVING DISABLED

2228
01:36:30,320 --> 01:36:32,520
TRAINEES AND DISABLED CLINICIANS

2229
01:36:32,520 --> 01:36:39,160
MEAN FOR DISABLED PATIENTS? WHAT

2230
01:36:39,160 --> 01:36:41,320
ARE WE TEACHING MEDICAL TRAINEES

2231
01:36:41,320 --> 01:36:44,200
ABOUT DISABILITY? FIRST NOT AS

2232
01:36:44,200 --> 01:36:46,560
MUCH A Z YOU THINK. THERE'S NO

2233
01:36:46,560 --> 01:36:47,840
TRAINING ON DISABILITY AND

2234
01:36:47,840 --> 01:36:50,320
PARTICULARLY DISABILITY APART

2235
01:36:50,320 --> 01:36:54,080
FROM PATHOLOGY. IN MEDICAL

2236
01:36:54,080 --> 01:36:56,160
SCHOOL, RESIDENCY OR FELLOWSHIP

2237
01:36:56,160 --> 01:36:58,720
EDUCATION AND CONTINUING MEDICAL

2238
01:36:58,720 --> 01:37:00,240
EDUCATION MOST OF WHAT WE LEARN

2239
01:37:00,240 --> 01:37:02,800
IS JUST FOCUSED ON TREATING SOME

2240
01:37:02,800 --> 01:37:06,000
KIND OF PATHOLOGY,OR LIMITED TO

2241
01:37:06,000 --> 01:37:07,320
UNDERSTANDING LIKE THE

2242
01:37:07,320 --> 01:37:08,240
BIOMECHANICAL MECHANISMS THAT

2243
01:37:08,240 --> 01:37:10,760
ARE UNDERPINNING DISEASE.  WE

2244
01:37:10,760 --> 01:37:12,560
DON'T REALLY GET ANY KIND OF

2245
01:37:12,560 --> 01:37:13,560
INFORMATION ABOUT DISABILITIES

2246
01:37:13,560 --> 01:37:15,800
AN IDENTITY, DISABILITY RIGHTS,

2247
01:37:15,800 --> 01:37:18,280
DISABILITY HISTORY, EVEN

2248
01:37:18,280 --> 01:37:19,440
INTERACTING WITH DISABLED

2249
01:37:19,440 --> 01:37:21,120
PATIENTS OR TAKING CARE OF

2250
01:37:21,120 --> 01:37:22,560
DISABILITIED PATIENTS AND

2251
01:37:22,560 --> 01:37:26,760
TRAINEES, TAKING CARE OF

2252
01:37:26,760 --> 01:37:28,800
DISDISABLED PATIENTS AND HELPING

2253
01:37:28,800 --> 01:37:30,000
LIVE MT. COMMUNITY, PARTICULARLY

2254
01:37:30,000 --> 01:37:32,080
WHEN YOU ARE THINKING ABOUT

2255
01:37:32,080 --> 01:37:34,400
THINGS LIKE FOUR MEDICAL

2256
01:37:34,400 --> 01:37:34,880
STUDENTS MIGHT HAVE AN

2257
01:37:34,880 --> 01:37:37,200
OPPORTUNITY TO LEARN PHYSICAL

2258
01:37:37,200 --> 01:37:39,240
EXAMINATION SKILLS ON DISABLED

2259
01:37:39,240 --> 01:37:40,600
INDIVIDUALS WORKING WITH

2260
01:37:40,600 --> 01:37:42,040
STANDARDIZE PATIENTS TO

2261
01:37:42,040 --> 01:37:43,400
SOMETHING THAT IS COMMON IN

2262
01:37:43,400 --> 01:37:46,360
MEDICAL EDUCATION, TO BE ABLE TO

2263
01:37:46,360 --> 01:37:47,480
LEARN THOSE EXAMINATION

2264
01:37:47,480 --> 01:37:48,640
TECHNIQUES IS SOMETHING NOT SEEN

2265
01:37:48,640 --> 01:37:50,400
AND NOT DONE. THE FACT THAT YOU

2266
01:37:50,400 --> 01:37:52,600
ARE NOT GETTING DISABILITY

2267
01:37:52,600 --> 01:37:55,080
EDUCATION LEADS TO A LOT OF

2268
01:37:55,080 --> 01:37:57,000
PHYSICIANS HAVING ANTI-WAITED

2269
01:37:57,000 --> 01:38:00,040
IDEAS ABOUT DISABILITY AND CAN

2270
01:38:00,040 --> 01:38:02,720
ALSO LEAD TO FEELING VERY

2271
01:38:02,720 --> 01:38:06,320
UNCOMFORTABLE WITH DISABLED

2272
01:38:06,320 --> 01:38:08,800
PATIENTS. ONE OF THE THINGS WE

2273
01:38:08,800 --> 01:38:10,520
KNOW ABOUT IS THAT THERE HAVE

2274
01:38:10,520 --> 01:38:12,520
BEEN SEVERAL STUDIES THAT HAVE

2275
01:38:12,520 --> 01:38:15,880
COME OUT OVER THE YEARS WHICH

2276
01:38:15,880 --> 01:38:17,160
STATE THAT CLINICIANS ARE NOT

2277
01:38:17,160 --> 01:38:18,760
COMFORTABLE WITH TAKING CARE OF

2278
01:38:18,760 --> 01:38:21,240
DISABLED PATIENTS, THEY MIGHT

2279
01:38:21,240 --> 01:38:22,440
FEEL THAT THEY DON'T KNOW AS

2280
01:38:22,440 --> 01:38:24,040
MUCH AS THAT I SHALL ABOUT

2281
01:38:24,040 --> 01:38:25,520
DISABILITY ISSUES MIGHT NOT WANT

2282
01:38:25,520 --> 01:38:27,360
TO WELCOME DISABLED PEOPLE INTO

2283
01:38:27,360 --> 01:38:28,280
THEIR CLINICAL PRACTICE AND IF

2284
01:38:28,280 --> 01:38:30,840
YOU CAN THINK OF SOMEONE BEING

2285
01:38:30,840 --> 01:38:32,240
FACULTY EDUCATOR WHO IS

2286
01:38:32,240 --> 01:38:34,080
RESPONSIBLE FOR TRAINING THE

2287
01:38:34,080 --> 01:38:35,800
NEXT GENERATION, THOSE ARE THE

2288
01:38:35,800 --> 01:38:37,520
KINDS OF IDEAS NORMS AN VALUES

2289
01:38:37,520 --> 01:38:38,840
THEY GOING TO PASS ON TO THEIR

2290
01:38:38,840 --> 01:38:42,960
TRAINEES.  THERE ARE THINGS WE

2291
01:38:42,960 --> 01:38:44,120
NEED TO KNOW ABOUT AND ON THIS

2292
01:38:44,120 --> 01:38:46,440
SLIDE YOU SEE A WORD CLOUD THAT

2293
01:38:46,440 --> 01:38:48,560
HAS VARIOUS EUPHEMISMS FOR

2294
01:38:48,560 --> 01:38:49,960
DISABILITY WITHIN THE WORD

2295
01:38:49,960 --> 01:38:53,040
CLOUD. THOSE ARE VARIOUS COLORS,

2296
01:38:53,040 --> 01:38:55,000
GREEN BLUE AN YELLOW AND SOME OF

2297
01:38:55,000 --> 01:38:56,880
THOSE EUPHEMISMS ARE DISABLED

2298
01:38:56,880 --> 01:38:59,240
PERSON SPECIAL NEEDS HANDICAPPED

2299
01:38:59,240 --> 01:39:00,560
DIFFERENTLY ABLED PHYSICALLY

2300
01:39:00,560 --> 01:39:01,840
CHALLENGED, THINGS OF THAT

2301
01:39:01,840 --> 01:39:03,680
NATURE. WITHIN THIS WORD CLOUD

2302
01:39:03,680 --> 01:39:05,240
ARE SOME TERMS I DON'T USE AND

2303
01:39:05,240 --> 01:39:07,200
SOME TERMS THAT ARE COMMONLY

2304
01:39:07,200 --> 01:39:12,240
USED IN MEDICINE. UNFORTUNATELY

2305
01:39:12,240 --> 01:39:13,960
THOSE LANGUAGES SOMETHING AS

2306
01:39:13,960 --> 01:39:15,720
PERVASIVE IN MEDICINE, OFTEN

2307
01:39:15,720 --> 01:39:17,920
TIMES YOU WILL HAVE PEOPLE AGAIN

2308
01:39:17,920 --> 01:39:19,320
NOT HAVE ANY PARTICULAR

2309
01:39:19,320 --> 01:39:20,640
EDUCATION ABOUT DISABILITY

2310
01:39:20,640 --> 01:39:22,120
INCLUSIVE COMMUNICATION, WHAT

2311
01:39:22,120 --> 01:39:25,240
HAVE YOU WHO ARE SERVING AS

2312
01:39:25,240 --> 01:39:25,960
EDUCATORS FOR THE NEXT

2313
01:39:25,960 --> 01:39:28,240
GENERATION OF TRAINEES BY MEANS

2314
01:39:28,240 --> 01:39:31,160
THESE TERMS HAVE PASSED DOWN,

2315
01:39:31,160 --> 01:39:32,440
DON'T NECESSARILY KNOW YOU DON'T

2316
01:39:32,440 --> 01:39:34,640
NEED TO USE THEM AND DON'T HAVE

2317
01:39:34,640 --> 01:39:37,640
ANY ALTERNATIVES TO WHAT THEY

2318
01:39:37,640 --> 01:39:39,040
CAN BE USING LANGUAGE THAT

2319
01:39:39,040 --> 01:39:41,720
CONTRIBUTES TO THE

2320
01:39:41,720 --> 01:39:42,920
STIGMATIZATION OF DISABILITY AND

2321
01:39:42,920 --> 01:39:48,240
DISABLED PEOPLE. SOME THINGS WE

2322
01:39:48,240 --> 01:39:50,200
KNOW AGAIN HIGHLIGHTED IN THE

2323
01:39:50,200 --> 01:39:55,560
PREVIOUS TALK, IS THERE ARE SOME

2324
01:39:55,560 --> 01:39:57,040
-- COMING UP, THERE'S MEDICAL

2325
01:39:57,040 --> 01:39:58,520
SCHOOLS THAT PARTNER WITH

2326
01:39:58,520 --> 01:40:00,040
DISABLED EDUCATORS AN

2327
01:40:00,040 --> 01:40:02,800
RESEARCHERS INCLUDING DISABLED

2328
01:40:02,800 --> 01:40:04,480
PEOPLE INTO DESIGN OF CURRICULA

2329
01:40:04,480 --> 01:40:06,520
FOR MEDICAL STUDENTS AND

2330
01:40:06,520 --> 01:40:09,000
RESIDENTS, WE KNOW THERE ARE

2331
01:40:09,000 --> 01:40:11,000
DISABILITIES FOCUSED CURRICULA

2332
01:40:11,000 --> 01:40:13,040
OR CENTERED CURRICULA COMING UP

2333
01:40:13,040 --> 01:40:14,720
FOR TRAINEES. OF COURSE THERE

2334
01:40:14,720 --> 01:40:16,480
ARE MORE OPPORTUNITIES FOR

2335
01:40:16,480 --> 01:40:17,600
CONTINUING MEDICAL EDUCATION,

2336
01:40:17,600 --> 01:40:20,120
RESIDENTS AND PEOPLE AND

2337
01:40:20,120 --> 01:40:22,600
PRACTICE ALREADY. I WAS JUST AT

2338
01:40:22,600 --> 01:40:24,640
AMERICAN ACADEMY OF NEUROLOGY

2339
01:40:24,640 --> 01:40:26,320
MEETING AND ONE THING I WAS

2340
01:40:26,320 --> 01:40:27,960
PLEASANTLY SURPRISED BY AND

2341
01:40:27,960 --> 01:40:30,400
HOPEFUL FOR WAS THE FACT THAT WE

2342
01:40:30,400 --> 01:40:32,000
HAVE SO MANY MORE TALKS

2343
01:40:32,000 --> 01:40:33,200
SPECIFICALLY DISABILITY FOCUSED

2344
01:40:33,200 --> 01:40:35,600
AT SOME OF OUR ACADEMIC MEDICAL

2345
01:40:35,600 --> 01:40:38,400
CONFERENCES. SO AGAIN, OTHER

2346
01:40:38,400 --> 01:40:40,000
OPPORTUNITIES FOR TRAINEE,

2347
01:40:40,000 --> 01:40:41,960
PEOPLE IN PRACTICE TO GET

2348
01:40:41,960 --> 01:40:44,200
DISABILITY EDUCATION.  AND THEN

2349
01:40:44,200 --> 01:40:45,720
ALSO MENTORSHIP PROGRAMS

2350
01:40:45,720 --> 01:40:49,440
DEVELOPING FOR TRAINEES AND

2351
01:40:49,440 --> 01:40:51,320
FACULTY SO THAT WE CAN CONNECT

2352
01:40:51,320 --> 01:40:53,280
WITH OTHER DISABLED PEOPLE AND

2353
01:40:53,280 --> 01:40:55,520
AGAIN SEE THAT IT IS POSSIBLE TO

2354
01:40:55,520 --> 01:40:57,800
HAVE A CAREER ACADEMIC MEDICINE

2355
01:40:57,800 --> 01:41:00,360
OR HAVE A CAREER IN MEDICINE AND

2356
01:41:00,360 --> 01:41:02,160
BE ABLE TO SEE THAT YOU CAN

2357
01:41:02,160 --> 01:41:05,360
CONTINUE TO MAKE PROGRESS AND BE

2358
01:41:05,360 --> 01:41:08,200
SUCCESSFUL AND HELP YOUR

2359
01:41:08,200 --> 01:41:10,360
PATIENTS. OTHER THINGS, SOME

2360
01:41:10,360 --> 01:41:11,640
THINGS THAT SOME PHYSICIAN

2361
01:41:11,640 --> 01:41:13,560
EDUCATORS OTHER PEOPLE IN

2362
01:41:13,560 --> 01:41:15,160
MEDICINE CAN DO TO SUPPORT

2363
01:41:15,160 --> 01:41:18,440
TRAINEES AND COLLEAGUES IS TO

2364
01:41:18,440 --> 01:41:20,920
RECOGNIZE DISABILITY, NOTION OR

2365
01:41:20,920 --> 01:41:23,080
IMPORTANCE OF DISABILITIES AND

2366
01:41:23,080 --> 01:41:24,720
IDENTITY, ACKNOWLEDGING ABLEISM

2367
01:41:24,720 --> 01:41:28,320
NEGATIVELY INFLUENCES MEDICAL

2368
01:41:28,320 --> 01:41:31,760
EDUCATION AND HEALTH. SIMILAR TO

2369
01:41:31,760 --> 01:41:33,760
OF COURSE OWN BIASES THESE ARE

2370
01:41:33,760 --> 01:41:34,880
SOME OF THE THINGS WE ARE

2371
01:41:34,880 --> 01:41:37,360
WORKING ON AND SOME OF THOSE

2372
01:41:37,360 --> 01:41:40,080
TALKS I REPRESENT AT THE ACADEMY

2373
01:41:40,080 --> 01:41:41,240
LAST WEEK AND I MOW OTHERS ARE

2374
01:41:41,240 --> 01:41:43,800
WORKING ON ACROSS THE COUNTRY.

2375
01:41:43,800 --> 01:41:47,120
SOME OTHER STEPS PHYSICIANS AN

2376
01:41:47,120 --> 01:41:48,640
EDUCATORS INCORPORATE

2377
01:41:48,640 --> 01:41:49,480
ANTI-ABLEIST PRACTICE INTO

2378
01:41:49,480 --> 01:41:50,600
MEDICAL TRAINING.  THERE ARE

2379
01:41:50,600 --> 01:41:51,600
OTHER KINDS OF PROGRAMS STARTING

2380
01:41:51,600 --> 01:41:53,640
TO WORK ON THINGS LIKE THAT. AND

2381
01:41:53,640 --> 01:41:56,680
ALSO DOING THESE KINDS OF NEEDS

2382
01:41:56,680 --> 01:41:57,680
ASSESSMENTS TO EXAMINE

2383
01:41:57,680 --> 01:42:00,720
INSTITUTIONAL POLICIES AND HAVE

2384
01:42:00,720 --> 01:42:04,560
ANOTHER TALK WE WERE GIVEN LAST

2385
01:42:04,560 --> 01:42:05,720
WEEK, ALSO ACADEMY TALK

2386
01:42:05,720 --> 01:42:08,320
SPECIFICALLY ABOUT HOW TO

2387
01:42:08,320 --> 01:42:09,720
ABLEIST MEDICAL LANGUAGE FROM

2388
01:42:09,720 --> 01:42:11,880
OUR PERSONAL LEXICONS SO THESE

2389
01:42:11,880 --> 01:42:13,320
CLINICIANS DON'T PERPETUATE

2390
01:42:13,320 --> 01:42:17,160
THOSE STEREOTYPES. IS MY LAST

2391
01:42:17,160 --> 01:42:20,720
SLIDE AND SHOWS CIRCLES ONE THAT

2392
01:42:20,720 --> 01:42:25,800
SAYS LGBTQ POSITIONS, ONE

2393
01:42:25,800 --> 01:42:27,680
LABELED UNDER-REPRESENTED

2394
01:42:27,680 --> 01:42:28,800
MINORITY PHYSICIAN AND ONE THAT

2395
01:42:28,800 --> 01:42:31,000
REPRESENTS PHYSICIANS WITH

2396
01:42:31,000 --> 01:42:32,200
DISABILITIES, SIDE NOTE I THINK

2397
01:42:32,200 --> 01:42:34,480
IT IS FUNNY BECAUSE PEOPLE DON'T

2398
01:42:34,480 --> 01:42:36,000
REALIZE YOU CAN BE ALL AT ONCE

2399
01:42:36,000 --> 01:42:38,520
BUT IN THE CENTER OF THE

2400
01:42:38,520 --> 01:42:39,280
CIRCLES, AGAIN SOME OF THE STEPS

2401
01:42:39,280 --> 01:42:41,440
WE CAN DO TO SUPPORT PHYSICIANS

2402
01:42:41,440 --> 01:42:42,600
AND TRAINEES FROM

2403
01:42:42,600 --> 01:42:43,840
UNDER-REPRESENTED GROUPS IN

2404
01:42:43,840 --> 01:42:46,360
MEDICINE, THOSE INCLUDE

2405
01:42:46,360 --> 01:42:47,880
MEDICATION, BIAS TRAINING

2406
01:42:47,880 --> 01:42:50,720
CULTURAL COMPETENCY AND

2407
01:42:50,720 --> 01:42:53,560
SENSITIVITY TRAINING DEBT

2408
01:42:53,560 --> 01:42:54,920
REDUCTION AND COMPENSATION

2409
01:42:54,920 --> 01:42:59,240
EQUITY AND ANOTHER TOPIC AND

2410
01:42:59,240 --> 01:43:00,040
INITIATIVES AND WORK FORCE

2411
01:43:00,040 --> 01:43:01,600
STUDIES. I WILL STOP SHARING.

2412
01:43:01,600 --> 01:43:11,800
THANK YOU.

2413
01:43:14,960 --> 01:43:18,640
>>WONDERFUL TALK, DIANA
AND

2414
01:43:18,640 --> 01:43:19,960
GOOD SEGUE TO WHAT I'M TALKING

2415
01:43:19,960 --> 01:43:23,920
ABOUT THIS MORNING.  WHICH IS

2416
01:43:23,920 --> 01:43:25,560
ORGANIZING AND ADVOCATING. I'M

2417
01:43:25,560 --> 01:43:28,480
GOING TO TALK A LITTLE BIT ABOUT

2418
01:43:28,480 --> 01:43:31,640
MY EXPERIENCE AT STANFORD. AS A

2419
01:43:31,640 --> 01:43:33,760
VISUAL DESCRIPTION I'M A BROWN

2420
01:43:33,760 --> 01:43:37,760
HAIRED BLUE EYED WHITE MAN, AND

2421
01:43:37,760 --> 01:43:41,760
I HAVE A BLUE SHIRT AND GRAY, I

2422
01:43:41,760 --> 01:43:45,640
THINK, YES, GRAY, SPORT COAT I

2423
01:43:45,640 --> 01:43:47,560
HAVE A HALF SMILE, IDENTIFIED AS

2424
01:43:47,560 --> 01:43:50,080
DISABLED I HAVE A C 3 C 4

2425
01:43:50,080 --> 01:43:57,600
INCOMPLETE SPINAL CORD INJURY. 

2426
01:43:57,600 --> 01:43:59,560
SO I FINISHED MY TRAINING IN

2427
01:43:59,560 --> 01:44:01,960
RADIOLOGY IN 2009 AND JOINED THE

2428
01:44:01,960 --> 01:44:05,720
FACULTY AND WORKED ON A LOT OF

2429
01:44:05,720 --> 01:44:07,120
INITIATIVES RELATED TO EDUCATION

2430
01:44:07,120 --> 01:44:10,080
AND RESIDENCY TRAINING AND AFTER

2431
01:44:10,080 --> 01:44:13,640
I STOPPED DOING A IN 2016 AND 17

2432
01:44:13,640 --> 01:44:15,640
STARTED LOOKING AROUND AND SAW

2433
01:44:15,640 --> 01:44:16,840
THAT DIVERSITY INITIATIVES WERE

2434
01:44:16,840 --> 01:44:19,840
POPPING UP ALL OVER CAMPUS AND I

2435
01:44:19,840 --> 01:44:21,400
HAD ALWAYS BEEN INTERESTED IN

2436
01:44:21,400 --> 01:44:23,760
DIVERSITY AND SOCIAL JUSTICE.

2437
01:44:23,760 --> 01:44:25,680
AND I WAS REALLY EXCITED WHEN I

2438
01:44:25,680 --> 01:44:28,200
GOT THIS NOTIFICATION THAT MY

2439
01:44:28,200 --> 01:44:29,480
DEPARTMENT WAS LAUNCHING A

2440
01:44:29,480 --> 01:44:30,880
DIVERSITY INITIATIVE AND I SAID

2441
01:44:30,880 --> 01:44:33,280
WOW THIS IS GREAT LOOK THERE'S

2442
01:44:33,280 --> 01:44:34,160
SOMEBODY IN A WHEELCHAIR AN

2443
01:44:34,160 --> 01:44:36,040
SOMEBODY WITH A WALKER, IT IS

2444
01:44:36,040 --> 01:44:38,120
VERY INCLUSIVE OF THOSE WITH

2445
01:44:38,120 --> 01:44:38,840
DISABILITIES, BUT WHEN I LOOKED

2446
01:44:38,840 --> 01:44:40,680
AT THE MEMBERS OF THE COMMITTEE

2447
01:44:40,680 --> 01:44:43,640
I NOTED THAT THERE WASN'T

2448
01:44:43,640 --> 01:44:46,280
ANYBODY WITH A VISIBLE OR KNOWN

2449
01:44:46,280 --> 01:44:47,920
DISABILITY SO I COULDN'T BE

2450
01:44:47,920 --> 01:44:50,520
CERTAIN THAT DISABILITY WAS

2451
01:44:50,520 --> 01:44:53,120
BEING REMITTED AND FOLLOWING THE

2452
01:44:53,120 --> 01:44:54,480
NOTHING ABOUT US WITHOUT US

2453
01:44:54,480 --> 01:45:00,160
MANTRA I VOLUNTEERED TO JOIN.

2454
01:45:00,160 --> 01:45:02,160
THE MORE I LEARNED ABOUT

2455
01:45:02,160 --> 01:45:04,400
DIVERSITY THE MORE I REALIZE

2456
01:45:04,400 --> 01:45:07,640
THAT IT LOOKS MORE LIKE THIS

2457
01:45:07,640 --> 01:45:12,240
WITH GENDER AND RACE AND SEXUAL

2458
01:45:12,240 --> 01:45:13,920
ORIENTATION WHICH ARE VERY

2459
01:45:13,920 --> 01:45:16,240
IMPORTANT COMPONENTS OF

2460
01:45:16,240 --> 01:45:19,040
DIVERSITY BUT NOT MUCH

2461
01:45:19,040 --> 01:45:20,120
REPRESENTATION OF DISABILITY.

2462
01:45:20,120 --> 01:45:23,920
AND I BEGAN TO REALIZE THAT

2463
01:45:23,920 --> 01:45:26,040
DISABILITY WAS EXCLUDED FROM

2464
01:45:26,040 --> 01:45:27,760
DIVERSITY EFFORTS AND MULTIPLE

2465
01:45:27,760 --> 01:45:29,760
LEVELS, WE HAD A DIVERSITY

2466
01:45:29,760 --> 01:45:32,560
CABINET AT STANFORD FOR TEN

2467
01:45:32,560 --> 01:45:35,960
YEARS THAT HAD NO DISABILITY

2468
01:45:35,960 --> 01:45:37,600
REPRESENTATION AND WE ARE OFTEN

2469
01:45:37,600 --> 01:45:40,080
AN AFTER THOUGHT OR THE LAST

2470
01:45:40,080 --> 01:45:43,480
GROUP TO JOIN THESE TYPES OF

2471
01:45:43,480 --> 01:45:47,080
DIVERSITY ALLIANCES. I ALSO

2472
01:45:47,080 --> 01:45:50,680
VOLUNTEERED FOR A FACULTY SENATE

2473
01:45:50,680 --> 01:45:51,640
SUBCOMMITTEE ON DIVERSITY AND IT

2474
01:45:51,640 --> 01:45:54,000
WAS THERE I SHEEPISHLY SUGGESTED

2475
01:45:54,000 --> 01:45:56,320
THAT WE WORK ON DISABILITY

2476
01:45:56,320 --> 01:45:59,000
ISSUES, AS PART OF OUR PROJECT

2477
01:45:59,000 --> 01:46:03,800
FOR THE UPCOMING YEAR. OUT OF

2478
01:46:03,800 --> 01:46:05,760
THAT THE WORK CULMINATED IN

2479
01:46:05,760 --> 01:46:10,080
FORMATION OF SMADI. PREVIOUSLY

2480
01:46:10,080 --> 01:46:13,240
CALLED SMAC IN LATE 2018, TO

2481
01:46:13,240 --> 01:46:14,880
DIEIA THAT'S DISCUSSION ABOUT

2482
01:46:14,880 --> 01:46:15,920
EUPHEMISMS WHEN I NAMED THE

2483
01:46:15,920 --> 01:46:18,040
GROUP I DIDN'T KNOW MUCH ABOUT

2484
01:46:18,040 --> 01:46:21,360
DISABLED CULTURE, AND LANGUAGE

2485
01:46:21,360 --> 01:46:25,000
SO AFTER A FEW YEARS WE DECIDED

2486
01:46:25,000 --> 01:46:26,920
TO CHANGE OUR NAME FOR ALLIANCE

2487
01:46:26,920 --> 01:46:28,840
OF DISABILITY INCLUSION AND

2488
01:46:28,840 --> 01:46:32,520
EQUITY LEADING INTO THE TERM

2489
01:46:32,520 --> 01:46:33,760
DISABILITY AND SO DISABILITY

2490
01:46:33,760 --> 01:46:36,160
PRIDE.  THESE ARE PICTURES OF

2491
01:46:36,160 --> 01:46:37,400
OUR LAUNCH EVENT WHEN WE BECAME

2492
01:46:37,400 --> 01:46:38,960
EMPLOYEE RESOURCE GROUP AT

2493
01:46:38,960 --> 01:46:40,120
STANFORD HOSPITAL AND WILL IS

2494
01:46:40,120 --> 01:46:43,000
SOME LEADERS ON THE STAGE MAKING

2495
01:46:43,000 --> 01:46:44,200
SPEECHES AND AUDIENCE MEMBERS

2496
01:46:44,200 --> 01:46:48,520
ARE SITTING AT ROUND TABLES WITH

2497
01:46:48,520 --> 01:46:49,960
TABLE CLOTHS AND OFF TO THE SIDE

2498
01:46:49,960 --> 01:46:51,800
THERE IS MY ASSISTANT WITH MY

2499
01:46:51,800 --> 01:46:53,880
CRUTCHES WAITING FOR MY TURN TO

2500
01:46:53,880 --> 01:46:58,200
TALK. I THINK THAT I BENEFITED

2501
01:46:58,200 --> 01:47:01,400
SOMEWHAT BECAUSE THE TIME WAS

2502
01:47:01,400 --> 01:47:02,880
RIGHT, SEPARATELY PEOPLE WERE

2503
01:47:02,880 --> 01:47:04,920
THINKING ABOUT HOW TO INCLUDE

2504
01:47:04,920 --> 01:47:05,840
DISABILITY AND DIVERSITY BUT

2505
01:47:05,840 --> 01:47:09,520
DIDN'T KNOW HOW TO START

2506
01:47:09,520 --> 01:47:10,760
DISABILITY WAS STIGMATIZED, THEY

2507
01:47:10,760 --> 01:47:13,160
WERE AFRAID OF SAYING THE WRONG

2508
01:47:13,160 --> 01:47:15,680
THING OR ASKING THE -- SAYING OR

2509
01:47:15,680 --> 01:47:18,800
ASKING THE RIGHT QUESTIONS, AND

2510
01:47:18,800 --> 01:47:20,720
EVEN WONDERING IF ASKING ABOUT

2511
01:47:20,720 --> 01:47:24,520
DISPARITIES WAS AGAINST THE LAW

2512
01:47:24,520 --> 01:47:25,560
-- DISABILITY WAS AGAINST THE

2513
01:47:25,560 --> 01:47:27,200
LAW. SO THERE WAS A GREAT DEAL

2514
01:47:27,200 --> 01:47:28,920
OF RELIEF WHEN I STARRED WORKING

2515
01:47:28,920 --> 01:47:31,080
ON THIS BECAUSE AS DISABLED

2516
01:47:31,080 --> 01:47:32,240
PERSON I WAS TASKED WITH IT AND

2517
01:47:32,240 --> 01:47:39,080
IT WAS TAKEN OFF THEIR PLATE.  

2518
01:47:39,080 --> 01:47:41,960
SO THE FIRST THING I DID WHEN

2519
01:47:41,960 --> 01:47:44,280
STARTING SMATIE, THESE ARE WHAT

2520
01:47:44,280 --> 01:47:46,080
I THINK ARE BEST PRACTICES OR

2521
01:47:46,080 --> 01:47:47,400
THINGS THAT I LEARNED FROM MY

2522
01:47:47,400 --> 01:47:49,240
EFFORTS WAS TO LEARN ABOUT THE A

2523
01:47:49,240 --> 01:47:52,600
B Cs, SO JUST UNDERSTANDING

2524
01:47:52,600 --> 01:47:54,320
THE DISABILITY LANDSCAPE AT

2525
01:47:54,320 --> 01:47:56,360
STANFORD AND ACROSS THE NATION,

2526
01:47:56,360 --> 01:47:58,080
THE ACRONYMS THAT EXIST

2527
01:47:58,080 --> 01:48:00,240
EVERYWHERE LIKE THE OAE OFFICE

2528
01:48:00,240 --> 01:48:02,840
OF ACCESSIBLE EDUCATION OR THE

2529
01:48:02,840 --> 01:48:04,800
DAO DIVERSITY AND ACCESS OFFICE.

2530
01:48:04,800 --> 01:48:06,280
WHO WORKED IN THOSE OFFICES AND

2531
01:48:06,280 --> 01:48:09,960
WHAT THEIR ROLES WERE. HAD TO

2532
01:48:09,960 --> 01:48:11,560
UNDERSTAND THAT SO THAT I WASN'T

2533
01:48:11,560 --> 01:48:16,760
JUST DUPLICATING EFFORTS ONE OF

2534
01:48:16,760 --> 01:48:18,480
MY PET PEEVES TO FIND OUT

2535
01:48:18,480 --> 01:48:19,520
SOMEBODY ELSE IS WORKING ON SAME

2536
01:48:19,520 --> 01:48:21,080
THING I'M WORKING ON AND WE ARE

2537
01:48:21,080 --> 01:48:24,680
NOT COLLABORATING TOGETHER ON

2538
01:48:24,680 --> 01:48:28,320
IT. SO WE REALLY ALSO STRIVE TO

2539
01:48:28,320 --> 01:48:31,360
BE INCLUSIVE IN OUR ADVOCACY,

2540
01:48:31,360 --> 01:48:33,040
INCLUDING ALL TYPES OF

2541
01:48:33,040 --> 01:48:35,600
DISABILITY GROUPS REPRESENTING

2542
01:48:35,600 --> 01:48:37,160
THE DIVERSITY WITHIN DISABILITY

2543
01:48:37,160 --> 01:48:42,920
AND THEN AS WELL AS DRAWING FROM

2544
01:48:42,920 --> 01:48:45,240
ALLYSHIP SUPPORT. SO THIS

2545
01:48:45,240 --> 01:48:47,080
INTERSECTIONAL APPROACH NOT ONLY

2546
01:48:47,080 --> 01:48:49,960
ADVANCES ANTI-ABLEISM BUT IS

2547
01:48:49,960 --> 01:48:51,440
MUTUALLY BENEFICIAL AND BEING

2548
01:48:51,440 --> 01:48:55,680
PART OF DEI NETWORK OPENS UP

2549
01:48:55,680 --> 01:48:58,360
RESOURCES IN TERMS OF FINANCIAL

2550
01:48:58,360 --> 01:49:00,800
RESOURCES EXPERIENTIAL RESOURCES

2551
01:49:00,800 --> 01:49:05,800
AND OTHERS THAT ARE CRITICAL TO

2552
01:49:05,800 --> 01:49:08,280
GROWTH. IT IS IMPORTANT TO

2553
01:49:08,280 --> 01:49:09,480
DEVELOP VALUES AND VISION AN

2554
01:49:09,480 --> 01:49:11,200
MISSION STATEMENTS IN ORDER TO

2555
01:49:11,200 --> 01:49:13,280
FOCUS YOUR EFFORTS. THESE HAVE

2556
01:49:13,280 --> 01:49:14,640
BEEN CAREFULLY CRAFTED AND

2557
01:49:14,640 --> 01:49:16,520
REFINED OVER TIME, I SORT OF

2558
01:49:16,520 --> 01:49:19,920
MADE UP THE ORIGINALS AND THEN

2559
01:49:19,920 --> 01:49:21,120
REFINED THEM WITH MEMBERS OF MY

2560
01:49:21,120 --> 01:49:26,800
BOARD OF DIRECTORS. AND SO UNDER

2561
01:49:26,800 --> 01:49:29,240
THE VALUES WE BELIEVE IN A WORLD

2562
01:49:29,240 --> 01:49:33,840
WHERE DISABILITY IS CELEBRATED

2563
01:49:33,840 --> 01:49:39,000
AS INTEGRAL PART OF EPILOU UZITY

2564
01:49:39,000 --> 01:49:40,120
DIVERSITY AND EQUITY, WE BELIEVE

2565
01:49:40,120 --> 01:49:41,600
IN A WORLD THAT WE ARE NOT QUITE

2566
01:49:41,600 --> 01:49:45,200
THERE YET AND THE CELEBRATED

2567
01:49:45,200 --> 01:49:46,720
WORD TO EXPRESS DISABILITY IS

2568
01:49:46,720 --> 01:49:48,720
NOT A PROBLEM TO BE SOLVED BUT

2569
01:49:48,720 --> 01:49:52,080
SOMETHING TO BE SOUGHT AFTER AND

2570
01:49:52,080 --> 01:49:54,840
CELEBRATED AND INCLUDED AS A

2571
01:49:54,840 --> 01:49:57,560
VITAL PART OF DIVERSITY. THEN WE

2572
01:49:57,560 --> 01:49:59,040
ALSO ENDEAVOR IN OUR VISION

2573
01:49:59,040 --> 01:50:02,360
STATEMENT TO TRANSFORM THE

2574
01:50:02,360 --> 01:50:03,400
CULTURE OF STANFORD MEDICINE

2575
01:50:03,400 --> 01:50:06,080
FROM BEYOND ONE OF COMPLIANCE TO

2576
01:50:06,080 --> 01:50:09,760
PROVOCATIVE ANTI-ABLEISM WHERE

2577
01:50:09,760 --> 01:50:11,840
EVERYONE CAN THRIVE. AS DIANA

2578
01:50:11,840 --> 01:50:14,440
SAID THIS CULTURE CHANGE IS

2579
01:50:14,440 --> 01:50:16,480
ESPECIALLY IMPORTANT REDUCING

2580
01:50:16,480 --> 01:50:21,280
IMPLICIT AND EXPLICIT BIAS,

2581
01:50:21,280 --> 01:50:23,520
NAMING ABLEISM AS ENEMY AND

2582
01:50:23,520 --> 01:50:25,760
UNDERSTANDING IT AND HOW IT

2583
01:50:25,760 --> 01:50:28,360
MANIFESTS AND THEN AGAIN

2584
01:50:28,360 --> 01:50:30,240
FOCUSING ON EFFORTS MUTUALLY

2585
01:50:30,240 --> 01:50:32,320
BENEFICIAL. THERE IS EVEN

2586
01:50:32,320 --> 01:50:37,800
OUTSIDE DISABILITY COMMUNITY. IN

2587
01:50:37,800 --> 01:50:40,960
ROOTING OUR MISSION WITHIN

2588
01:50:40,960 --> 01:50:43,120
DIVERSITY EFFORTS INTEGRATING

2589
01:50:43,120 --> 01:50:44,440
ACROSS STANFORD WE ARE ABLE TO

2590
01:50:44,440 --> 01:50:46,520
APPROACH THIS WORK FROM SEVERAL

2591
01:50:46,520 --> 01:50:49,360
AREAS OF IMPACT. THESE ARE

2592
01:50:49,360 --> 01:50:51,200
RESEARCH ADVOCACY COMMUNITY

2593
01:50:51,200 --> 01:50:56,120
EDUCATION HEALTH EQUITY AND

2594
01:50:56,120 --> 01:51:01,760
MENTORSHIP SORRY, I HAVE DRY

2595
01:51:01,760 --> 01:51:03,920
MOUTH. SO THESE ARE VERY

2596
01:51:03,920 --> 01:51:09,800
IMPORTANT FOR ESTABLISHING

2597
01:51:09,800 --> 01:51:15,200
ACADEMIC CREDIBILITY FOR

2598
01:51:15,200 --> 01:51:18,040
DEVELOPING ROBUST PROGRAM THAT

2599
01:51:18,040 --> 01:51:20,520
CAN SUPPORT NOT ONLY DOCTORS AND

2600
01:51:20,520 --> 01:51:23,720
TRAINEES AND OTHER EMPLOYEES

2601
01:51:23,720 --> 01:51:25,440
WITH DISABILITY BUT PATIENTS

2602
01:51:25,440 --> 01:51:27,080
WITH DISABILITIES.  AN EXAMPLE

2603
01:51:27,080 --> 01:51:29,440
OF EDUCATION IS OUR ANNUAL

2604
01:51:29,440 --> 01:51:33,640
CONFERENCE THAT JUST TOOK PLACE

2605
01:51:33,640 --> 01:51:37,240
ON SATURDAY, UNDER THE HEALTH

2606
01:51:37,240 --> 01:51:39,160
EQUITY MISSION. THERE WAS AN

2607
01:51:39,160 --> 01:51:40,600
AMBULATORY TRANSFORMATION TASK

2608
01:51:40,600 --> 01:51:42,400
FORCE THAT LAUNCH AD COUPLE OF

2609
01:51:42,400 --> 01:51:44,800
YEARS AGO TO IMPROVE ACCESS TO

2610
01:51:44,800 --> 01:51:46,000
HEALTH FOR THE COMMUNITY AND I

2611
01:51:46,000 --> 01:51:48,680
WANT TO MAKE SURE THEY WERE

2612
01:51:48,680 --> 01:51:51,080
FOCUSING ON DISABILITY WHICH

2613
01:51:51,080 --> 01:51:53,240
THEY HADN'T THOUGHT ABOUT. AND

2614
01:51:53,240 --> 01:51:55,840
MENTORSHIP WITH OUR MENTORSHIP

2615
01:51:55,840 --> 01:51:57,640
PROGRAM I WILL TALK ABOUT AFTER.

2616
01:51:57,640 --> 01:51:59,280
SO THESE ARE THE SIX MISSION

2617
01:51:59,280 --> 01:52:01,760
FUNCTIONS AND THEN WE ALSO

2618
01:52:01,760 --> 01:52:04,360
WANTED TO TO INTEGRATE ACROSS

2619
01:52:04,360 --> 01:52:07,400
THE INSTITUTIONAL ENTERPRISE.

2620
01:52:07,400 --> 01:52:09,640
STANFORD IS A BIG ACADEMIC

2621
01:52:09,640 --> 01:52:11,640
MEDICAL CENTER UNDER THE

2622
01:52:11,640 --> 01:52:15,120
UMBRELLA OF STANFORD UNIVERSITY,

2623
01:52:15,120 --> 01:52:16,960
UNDER THAT THERE IS SCHOOL OF

2624
01:52:16,960 --> 01:52:18,200
MEDICINE. WE HAVE STANFORD

2625
01:52:18,200 --> 01:52:21,200
HEALTHCARE OUR ADULT HOSPITAL,

2626
01:52:21,200 --> 01:52:22,920
STANFORD CHILDREN'S HEALTH

2627
01:52:22,920 --> 01:52:25,000
PEDIATRIC HOSPITAL, AND THOSE

2628
01:52:25,000 --> 01:52:27,320
ARE SEPARATE BUSINESS ENTITIES,

2629
01:52:27,320 --> 01:52:29,480
THEN THERE ARE SOME GROUPS THAT

2630
01:52:29,480 --> 01:52:33,240
SPAN BOTH HOSPITAL AND SCHOOL OF

2631
01:52:33,240 --> 01:52:35,360
MEDICINE. SO WE WANTED TO MAKE

2632
01:52:35,360 --> 01:52:36,120
SURE THAT DISABILITY WAS

2633
01:52:36,120 --> 01:52:38,840
REPRESENTED IN ALL OF THESE

2634
01:52:38,840 --> 01:52:42,200
SPHERESS. SO IN STANFORD

2635
01:52:42,200 --> 01:52:43,360
HEALTHCARE WE STARTED A PATIENT

2636
01:52:43,360 --> 01:52:46,080
FAMILY ADVISORY COUNCIL TO TIME

2637
01:52:46,080 --> 01:52:48,240
UP PATIENTS AND CAREGIVER --

2638
01:52:48,240 --> 01:52:49,840
TEAM UP PATIENTS AND CAREGIVERS

2639
01:52:49,840 --> 01:52:51,200
WITH IS A STAFF TO WORK ON

2640
01:52:51,200 --> 01:52:56,800
ACCESSIBILITY PROJECTS AT THE

2641
01:52:56,800 --> 01:52:58,760
HOSPITAL. WE WORKED WITH OUR

2642
01:52:58,760 --> 01:53:00,640
LIBRARY COLLEAGUES TO CREATE

2643
01:53:00,640 --> 01:53:03,720
INTERSECTIONAL DISCUSSION GROUPS

2644
01:53:03,720 --> 01:53:05,000
WITH OTHER EMPLOYEE RESOURCE

2645
01:53:05,000 --> 01:53:06,680
GROUPS TO BUILD ALLIANCES FOR

2646
01:53:06,680 --> 01:53:10,160
EXAMPLE, WE HAD ONE ON BEING

2647
01:53:10,160 --> 01:53:13,160
BLACK AND DISABLED, ANOTHER ONE

2648
01:53:13,160 --> 01:53:23,680
ON BEING QUEER AND DISABLED. 

2649
01:53:25,000 --> 01:53:27,040
THESE EFFORTS AND ALLIANCES THAT

2650
01:53:27,040 --> 01:53:30,280
WE CREATED ARE UNIQUE AND HASN'T

2651
01:53:30,280 --> 01:53:32,800
BEEN AN ORGANIZATION AT STANFORD

2652
01:53:32,800 --> 01:53:34,800
THAT HAS PUT HOLD IN

2653
01:53:34,800 --> 01:53:35,640
RELATIONSHIPS MANY ALL THESE

2654
01:53:35,640 --> 01:53:38,000
DIFFERENT AREAS.  THAT'S SORT OF

2655
01:53:38,000 --> 01:53:40,080
PROFILE HAS RESULTED IN US

2656
01:53:40,080 --> 01:53:42,760
HAVING A SEAT AT THE TABLE.

2657
01:53:42,760 --> 01:53:47,600
IMPORTANT DISCUSSIONS. ONE OTHER

2658
01:53:47,600 --> 01:53:49,760
THING THAT IS IMPORTANT IS TO

2659
01:53:49,760 --> 01:53:50,960
UNDERSTAND YOUR LANDSCAPE AND

2660
01:53:50,960 --> 01:53:53,720
HAVE DATA TO BACK UP YOUR

2661
01:53:53,720 --> 01:53:54,960
ASSERTIONS. WE HAVE THIS JUSTICE

2662
01:53:54,960 --> 01:54:01,280
EQUITY AN DISABILITY SURVEY IN

2663
01:54:01,280 --> 01:54:04,160
2020 AND FOUND OUT STANFORD

2664
01:54:04,160 --> 01:54:05,440
MEDICINE 26% OF STUDENTS

2665
01:54:05,440 --> 01:54:08,960
EMPLOYEES HAVE A DISABILITY.

2666
01:54:08,960 --> 01:54:11,040
THOUGH MOST DON'T IDENTIFY, ONLY

2667
01:54:11,040 --> 01:54:13,920
8% COMMUNITY IDENTIFIES HAVING A

2668
01:54:13,920 --> 01:54:15,440
DISABILITY.  WE FOUND OUT THAT

2669
01:54:15,440 --> 01:54:18,600
MOST HAVE NO ACCOMMODATIONS IN

2670
01:54:18,600 --> 01:54:21,000
PLACE. AND IN THE QUALITATIVE

2671
01:54:21,000 --> 01:54:25,400
ANALYSIS BECAUSE THE COST IN

2672
01:54:25,400 --> 01:54:27,440
TERMS OF STIGMA AND CAREER HARM

2673
01:54:27,440 --> 01:54:29,400
WERE TOO HIGH AND PEOPLE DIDN'T

2674
01:54:29,400 --> 01:54:31,280
REALLY SEE THE BENEFITS WITHOUT

2675
01:54:31,280 --> 01:54:34,400
THE RISKS OUT-- OR HOW RISKS

2676
01:54:34,400 --> 01:54:36,200
OUTWEIGHED THE BENEFITS.  WE

2677
01:54:36,200 --> 01:54:37,240
FOUND THERE WASN'T A STRONG

2678
01:54:37,240 --> 01:54:38,520
SENSE OF COMMUNITY, DISABILITY

2679
01:54:38,520 --> 01:54:40,040
COMMUNITY AT STANFORD AND THEN

2680
01:54:40,040 --> 01:54:43,000
WHEN WE LOOK AT THE CLIMATE WE

2681
01:54:43,000 --> 01:54:46,000
SAW THAT EXPERIENCE OF OUR

2682
01:54:46,000 --> 01:54:47,120
DISABLED STUDENTS AND COLLEAGUES

2683
01:54:47,120 --> 01:54:50,840
WAS LOWER THAN EVEN AMONG OTHER

2684
01:54:50,840 --> 01:54:52,560
MINORITIZE GROUPSES AND THERE

2685
01:54:52,560 --> 01:54:57,960
WAS A STRONG SENSE OF EXCLUSION

2686
01:54:57,960 --> 01:55:02,200
AND POOR TREATMENT TO BE FRANK.

2687
01:55:02,200 --> 01:55:05,360
THEN THESE SORTS OF SURVEYS AND

2688
01:55:05,360 --> 01:55:08,080
UNDERSTANDING THE LANDSCAPE LED

2689
01:55:08,080 --> 01:55:11,080
TO MORE RECENTLY DR. MEEKS CAME

2690
01:55:11,080 --> 01:55:13,240
TO DO A SITE VISIT TO ASSESS

2691
01:55:13,240 --> 01:55:14,240
MEDICAL SCHOOL LEARNING

2692
01:55:14,240 --> 01:55:15,080
ENVIRONMENT AND HOPEFULLY THAT

2693
01:55:15,080 --> 01:55:17,200
IS GOING TO RESULT IN SOME

2694
01:55:17,200 --> 01:55:20,680
CHANGES INCLUDING SOME NEWLY

2695
01:55:20,680 --> 01:55:22,520
CREATED LEADERSHIP POSITIONS TO

2696
01:55:22,520 --> 01:55:26,280
MAKE SURE DISABILITY TREATMENT

2697
01:55:26,280 --> 01:55:30,600
IS IMPROVED.  SO YOU DON'T HAVE

2698
01:55:30,600 --> 01:55:31,960
TO REINVENT THE WHEEL, THERE'S A

2699
01:55:31,960 --> 01:55:33,480
LOT OF TOOLS OUT THERE, FOR

2700
01:55:33,480 --> 01:55:35,000
LEARNING THAT YOU CAN APPLY TO

2701
01:55:35,000 --> 01:55:39,520
YOUR OWN INSTITUTIONS LIKE AAMC

2702
01:55:39,520 --> 01:55:42,320
REPORT. AUTHORED BY MEEKS AND

2703
01:55:42,320 --> 01:55:45,160
JANE AND OTHERS, NIH SCIENTIFIC

2704
01:55:45,160 --> 01:55:47,240
WORK FORCE DIVERSITY TOOL KIT.

2705
01:55:47,240 --> 01:55:48,680
THERE ARE BOOKS SUCH AS EQUAL

2706
01:55:48,680 --> 01:55:50,520
ACCESS FOR STUDENTS WITH

2707
01:55:50,520 --> 01:55:52,160
DISABILITIES, AND DISABILITY AS

2708
01:55:52,160 --> 01:55:54,840
DIVERSITY, THERE IS A PLETHORA

2709
01:55:54,840 --> 01:55:58,240
OF AAMC WEBINARS, COALITION OF

2710
01:55:58,240 --> 01:56:00,160
DISABILITY ACCESS AND HEALTH

2711
01:56:00,160 --> 01:56:02,920
SCIENCE EDUCATION HAS A LOT OF

2712
01:56:02,920 --> 01:56:04,800
RESOURCES ALSO ONE HINGE THAT WE

2713
01:56:04,800 --> 01:56:08,360
RECENTLY LAUNCHED IS AN ONLINE

2714
01:56:08,360 --> 01:56:11,200
COURSE CALLED CREATIVE INCLUSIVE

2715
01:56:11,200 --> 01:56:12,000
LEARNING ENVIRONMENT TO

2716
01:56:12,000 --> 01:56:13,920
MEDICINE, A GUIDE TO

2717
01:56:13,920 --> 01:56:15,960
ACCOMMODATIONS FOR LEARNERS IT

2718
01:56:15,960 --> 01:56:17,240
IS DISABILITY, THESE ARE

2719
01:56:17,240 --> 01:56:19,040
ANIMATED INTERACTIVE MODULES

2720
01:56:19,040 --> 01:56:21,040
THAT ILLUSTRATE BEST PRACTICES

2721
01:56:21,040 --> 01:56:23,680
FOR INCLUSION. YOU CAN FIND THIS

2722
01:56:23,680 --> 01:56:26,480
ONLINE BY SEARCHING THIS TITLE

2723
01:56:26,480 --> 01:56:31,200
AND IT IS ON STANFORD CME

2724
01:56:31,200 --> 01:56:35,320
WEBSITE. ALSO LIKE TO HIGHLIGHT

2725
01:56:35,320 --> 01:56:36,480
THE DOCS WITH DISABILITIES

2726
01:56:36,480 --> 01:56:37,640
INITIATIVE AND RESOURCES THROUGH

2727
01:56:37,640 --> 01:56:42,560
THAT INCLUDING THE PODCAST THE

2728
01:56:42,560 --> 01:56:45,320
DISABILITY GRADUATE MEDICAL

2729
01:56:45,320 --> 01:56:47,400
EDUCATION GROUP, THERE IS DR.

2730
01:56:47,400 --> 01:56:51,080
MEEKS HAS A TON OF RESOURCES ON

2731
01:56:51,080 --> 01:56:53,240
THERE. LASTLY I WANT TO TALK

2732
01:56:53,240 --> 01:56:55,280
ABOUT DISABILITY IN MEDICINE

2733
01:56:55,280 --> 01:57:01,280
MUTUAL MENTORSHIP PROGRAM. WE

2734
01:57:01,280 --> 01:57:03,920
INVITE ANYONE TO JOIN THE

2735
01:57:03,920 --> 01:57:05,440
PROGRAM, MENTORSHIP PROGRAM TO

2736
01:57:05,440 --> 01:57:07,720
RECOGNIZE OUR INTERDEPENDENCE

2737
01:57:07,720 --> 01:57:10,120
AND THAT EVERYBODY HAS SOMETHING

2738
01:57:10,120 --> 01:57:11,480
TO OFFER AS MENTOR AND EVERYBODY

2739
01:57:11,480 --> 01:57:13,920
CAN BE MENTORED AND RECOGNIZING

2740
01:57:13,920 --> 01:57:15,720
THAT ONE'S EXPERIENCE WITH

2741
01:57:15,720 --> 01:57:16,720
DISABILITY DOESN'T CORRELATE

2742
01:57:16,720 --> 01:57:20,560
WITH ACADEMIC RANK.  WE HAVE

2743
01:57:20,560 --> 01:57:23,040
VIRTUAL MONTHLY MEETINGS WITH

2744
01:57:23,040 --> 01:57:24,400
DIDACTIC LECTURES AND

2745
01:57:24,400 --> 01:57:25,560
INTERACTIVE SESSIONS AND BREAK

2746
01:57:25,560 --> 01:57:28,240
OUT ROOMS. WE HAVE NETWORKING

2747
01:57:28,240 --> 01:57:31,400
EVENTS BEFORE AND AFTER, WE HAVE

2748
01:57:31,400 --> 01:57:35,400
OPPORTUNITIES FOR ASYNCHRONOUS

2749
01:57:35,400 --> 01:57:36,920
MEN VERYSHIP ONLINE. THIS IS ALL

2750
01:57:36,920 --> 01:57:38,520
DISABLED HEALTHCARE WORKERS,

2751
01:57:38,520 --> 01:57:40,520
TRAINEES AND ALLIES, IT IS

2752
01:57:40,520 --> 01:57:46,280
TOTALLY FREE, YOU CAN FIND US AT

2753
01:57:46,280 --> 01:57:48,040
DISABILITYMENTORS.ORG OR EMAIL

2754
01:57:48,040 --> 01:57:50,640
AT DISABILITYMEDMENTORS.ORG.

2755
01:57:50,640 --> 01:57:57,760
WITH THAT I WILL CONCLUDE.  STOP

2756
01:57:57,760 --> 01:58:02,680
MY SLIDE SHOW.

2757
01:58:02,680 --> 01:58:04,880
>>THANK YOU, I WILL
INVITE ALL

2758
01:58:04,880 --> 01:58:05,320
MY PANELISTS TO.

2759
01:58:05,320 --> 01:58:15,800
COP BACK ON CAMERA.  JUST TO

2760
01:58:17,280 --> 01:58:19,960
REMIND THE AUDIENCE, OUR PLAN

2761
01:58:19,960 --> 01:58:22,600
FROM OUT HERE IS WE HAVE A FEW

2762
01:58:22,600 --> 01:58:26,600
PREPARED DISCUSSION TOPICS AND

2763
01:58:26,600 --> 01:58:28,080
THEN THERE ARE LOTS OF AMAZING

2764
01:58:28,080 --> 01:58:31,560
QUESTIONS COMING IN THROUGH THE

2765
01:58:31,560 --> 01:58:33,120
Q&A. AND THROUGH SOME OTHER

2766
01:58:33,120 --> 01:58:34,680
CHANNELS AND WE WILL SEE HOW

2767
01:58:34,680 --> 01:58:38,040
MANY OF THEM WE CAN GET TO. I'M

2768
01:58:38,040 --> 01:58:39,880
GOING TO DO SOME QUICK ONES

2769
01:58:39,880 --> 01:58:41,880
FIRST WHICH IS THAT THERE HAVE

2770
01:58:41,880 --> 01:58:42,920
BEEN QUESTIONS ABOUT WHETHER

2771
01:58:42,920 --> 01:58:44,960
FOLKS ARE WILLING TO SHARE THEIR

2772
01:58:44,960 --> 01:58:48,600
SLIDES AND PROVIDE CITATIONS. I

2773
01:58:48,600 --> 01:58:49,640
AM GUESSING MOST OF YOU WOULD BE

2774
01:58:49,640 --> 01:58:52,320
WILLING TO DO THAT BUT WE WILL

2775
01:58:52,320 --> 01:58:53,800
DEFINITELY FOLLOW-UP WITH THOSE

2776
01:58:53,800 --> 01:58:56,200
OF YOU ASKING QUESTIONS AND

2777
01:58:56,200 --> 01:58:58,880
ATTENDING ABOUT THAT AFTER THE

2778
01:58:58,880 --> 01:59:02,680
MEETING. THE FIRST QUESTION I

2779
01:59:02,680 --> 01:59:05,960
WILL THROW UP MY PLEA THREE

2780
01:59:05,960 --> 01:59:08,320
PANELISTS IS SO Y'ALL PROVIDED A

2781
01:59:08,320 --> 01:59:13,200
LOT OF AMAZING DATA AND CONTEXT.

2782
01:59:13,200 --> 01:59:16,360
WOULD YOU BE WILLING TO SHARE

2783
01:59:16,360 --> 01:59:19,200
YOUR -- SHARE ANY NECK DOSE

2784
01:59:19,200 --> 01:59:20,840
WHETHER YOURS OR THOSE OF OTHERS

2785
01:59:20,840 --> 01:59:21,880
THAT HELP ILLUSTRATE THE POINTS

2786
01:59:21,880 --> 01:59:23,800
FROM YOUR TALKS ABOUT THE IMPACT

2787
01:59:23,800 --> 01:59:30,080
OF ABLEISM ON WORK FORCE?

2788
01:59:30,080 --> 01:59:32,800
>>THIS IS MY TALK SINCE
MY TALK

2789
01:59:32,800 --> 01:59:35,320
WAS FIRST I WILL START. IF YOU

2790
01:59:35,320 --> 01:59:36,560
SHORT STORIES THAT ILLUSTRATE

2791
01:59:36,560 --> 01:59:40,760
THESE IDEAS, IN PRIMARILY MORE

2792
01:59:40,760 --> 01:59:43,960
RESEARCH BASE FOR THIS PART, FOR

2793
01:59:43,960 --> 01:59:44,600
EXAMPLE I KNOW I WORK IN

2794
01:59:44,600 --> 01:59:46,960
RESEARCH TO DO WITH LONG TERM

2795
01:59:46,960 --> 01:59:48,960
OUTCOMES AND PREMATURITY, IF YOU

2796
01:59:48,960 --> 01:59:52,560
LOOK AT RESEARCH LITERATURE ON

2797
01:59:52,560 --> 01:59:54,720
THAT GROUP KIDS INTO MILD OR NO

2798
01:59:54,720 --> 01:59:56,120
DISABILITY MODERATE BUT THE

2799
01:59:56,120 --> 01:59:58,120
THING YOU GET TO LAST CATEGORY

2800
01:59:58,120 --> 01:59:59,960
GROUPS SEVERE DISABILITY AN

2801
01:59:59,960 --> 02:00:01,760
DEATH AS ONE CATEGORY. I HAVE

2802
02:00:01,760 --> 02:00:03,320
COLLEAGUES WHO FIND THAT

2803
02:00:03,320 --> 02:00:06,800
INCREDIBLY OFFENSIVE. IS

2804
02:00:06,800 --> 02:00:09,120
IMPLICATION THAT JUST BECAUSE

2805
02:00:09,120 --> 02:00:12,040
THEY HAVE CP DEGREE THEY HAD

2806
02:00:12,040 --> 02:00:14,040
DIFFICULTY WALKING OR DON'T WALK

2807
02:00:14,040 --> 02:00:18,480
AT ALL, MIGHT BE BLIND OR DEAF

2808
02:00:18,480 --> 02:00:19,280
DISABILITY BUT RESEARCH IS

2809
02:00:19,280 --> 02:00:23,200
FRAMING THEM AS EQUIVALENT AND

2810
02:00:23,200 --> 02:00:26,160
THAT IS JUST ORIAL. THAT ONE --

2811
02:00:26,160 --> 02:00:27,560
HORRIBLE. ONE PLACE YOU CAN SEE

2812
02:00:27,560 --> 02:00:29,080
THIS. I KNOW PEOPLE INTERESTED

2813
02:00:29,080 --> 02:00:31,160
IN GOING INTO RESEARCH FOCUSING

2814
02:00:31,160 --> 02:00:34,360
ON CONDITION THAT THEY HAVE.

2815
02:00:34,360 --> 02:00:36,040
THEN DECIDED TO CHANGE RESEARCH

2816
02:00:36,040 --> 02:00:37,760
DIRECTIONS BECAUSE OF FEELING

2817
02:00:37,760 --> 02:00:39,480
UNCOMFORTABLE GOING TO TALKS AND

2818
02:00:39,480 --> 02:00:41,760
OTHERWISE IN SPACES WHERE PEOPLE

2819
02:00:41,760 --> 02:00:46,240
LIKE THEM TALK ABOUT NEGATIVE

2820
02:00:46,240 --> 02:00:48,440
PATHOLPATHOLOGIZING WAY THEY TUD

2821
02:00:48,440 --> 02:00:50,680
OFF AND MOVE TO ANOTHER FIELD SO

2822
02:00:50,680 --> 02:00:52,880
DEFINITELY SOMETHING IMPACTFUL

2823
02:00:52,880 --> 02:00:57,720
TO PEOPLE IN THIS SPACE. 

2824
02:00:57,720 --> 02:00:59,560
>>I'M HAPPY TO SHARE AS
WELL.

2825
02:00:59,560 --> 02:01:01,800
SPECIFICALLY THINKING ABOUT THE

2826
02:01:01,800 --> 02:01:04,320
WHOLE RECRUITMENT PROCESS FOR

2827
02:01:04,320 --> 02:01:06,400
OUR TRAINEES, AT THIS POINT I

2828
02:01:06,400 --> 02:01:09,320
HAVE BEEN INVOLVED IN

2829
02:01:09,320 --> 02:01:10,880
RECRUITMENT FOR RESIDENCY AND

2830
02:01:10,880 --> 02:01:12,320
FELLOWSHIP PROGRAMS, IN

2831
02:01:12,320 --> 02:01:14,800
RESIDENCY FELLOWSHIP MYSELF. AND

2832
02:01:14,800 --> 02:01:16,840
OFTEN TIMES PARTICULARLY ATHINK

2833
02:01:16,840 --> 02:01:18,840
ONE OF THE THINGS THAT PEPPAR

2834
02:01:18,840 --> 02:01:21,840
MENTIONED WAS SO MANY DISABLED

2835
02:01:21,840 --> 02:01:22,960
TRAINEES OR TRAINEES HAVE

2836
02:01:22,960 --> 02:01:25,560
PROBLEMS GETTING ACCOMMODATIONS

2837
02:01:25,560 --> 02:01:27,080
FOR SPECIFIC CONDITIONS OR TESTS

2838
02:01:27,080 --> 02:01:29,920
WHAT HAVE YOU. THERE HAVE BEEN

2839
02:01:29,920 --> 02:01:31,480
MANY TIMES IN THE ROOM AND

2840
02:01:31,480 --> 02:01:33,760
DISCUSSIONS ABOUT TRAINEE WHO

2841
02:01:33,760 --> 02:01:36,240
MIGHT BE OTHERWISE FANTASTIC,

2842
02:01:36,240 --> 02:01:38,560
MAYBE THEY NEEDED ACCOMMODATION

2843
02:01:38,560 --> 02:01:40,120
FOR CERTAIN TEST OR MAYBE THEY

2844
02:01:40,120 --> 02:01:42,400
HAVE A HISTORY OF HAVING FAILED

2845
02:01:42,400 --> 02:01:45,000
ONE OF THE STEPS OR ONE OF THE

2846
02:01:45,000 --> 02:01:46,320
STANDARDIZED TESTS. THE QUESTION

2847
02:01:46,320 --> 02:01:48,680
IS ALWAYS IS THIS PERSON GOING

2848
02:01:48,680 --> 02:01:50,480
TO BE A LIABILITY WHAT KIND OF

2849
02:01:50,480 --> 02:01:53,560
THINGS WE AS PROGRAM GOING TO BE

2850
02:01:53,560 --> 02:01:55,840
MISSING OUT ON IF WE END UP

2851
02:01:55,840 --> 02:01:57,080
TAKING THIS PERSON IN AND

2852
02:01:57,080 --> 02:01:58,480
ALREADY STARTING TO PROJECTED

2853
02:01:58,480 --> 02:02:01,280
ARE THEY GOING TO BE ABLE TO

2854
02:02:01,280 --> 02:02:02,680
PASS THE TEST BE ABLE TO DO

2855
02:02:02,680 --> 02:02:04,280
THESE THINGS RATHER THAN LOOKING

2856
02:02:04,280 --> 02:02:06,840
AT THE REST OF THE APPLICATION,

2857
02:02:06,840 --> 02:02:07,720
LOOK AT THE REST OF THE

2858
02:02:07,720 --> 02:02:09,600
APPLICANT SO THERE'S SO MUCH

2859
02:02:09,600 --> 02:02:11,160
FOCUS ON OH THIS IS A PERSON

2860
02:02:11,160 --> 02:02:13,080
THAT WILL BE DETRIMENTAL TO OUR

2861
02:02:13,080 --> 02:02:14,000
PROGRAM RATHER THAN THINKING

2862
02:02:14,000 --> 02:02:16,480
WHAT IS -- HOW OUR PROGRAM CAN

2863
02:02:16,480 --> 02:02:19,400
BENEFIT FROM HAVING THIS PERSON

2864
02:02:19,400 --> 02:02:22,000
AND PARTICULAR EXPERIENCES. 

2865
02:02:22,000 --> 02:02:23,800
THINKING ABOUT AGAIN LIKE PIGGY

2866
02:02:23,800 --> 02:02:25,600
BACKING OFF SOMETHING PEPPAR

2867
02:02:25,600 --> 02:02:27,080
SAID, SOMETHING ABOUT NOT

2868
02:02:27,080 --> 02:02:28,080
WANTING TO BE IN A ROOM OR NOT

2869
02:02:28,080 --> 02:02:32,920
WANTING TO HEAR HOW PEOPLE SPEAK

2870
02:02:32,920 --> 02:02:35,200
ABOUT YOU SO I GUESS YOU HEARD

2871
02:02:35,200 --> 02:02:37,120
BEFORE I'M A CANCER SURVIVOR,

2872
02:02:37,120 --> 02:02:40,480
STROKE SURVIVOR AND I DID

2873
02:02:40,480 --> 02:02:42,320
TRAINING IN PEDIATRIC NEUROLOGY,

2874
02:02:42,320 --> 02:02:44,160
WE HAVE TO SPEND A YEAR ON THE

2875
02:02:44,160 --> 02:02:46,680
THE ADULT NEUROLOGY SITE. I

2876
02:02:46,680 --> 02:02:49,560
SPEND TIME WORKING IN THE STROKE

2877
02:02:49,560 --> 02:02:50,600
UNIVERSITY, BEING THE PERSON WHO

2878
02:02:50,600 --> 02:02:52,160
WAS FIRST RESPONDER TO A STROKE

2879
02:02:52,160 --> 02:02:55,920
CODE, AND THEN OF COURSE SITTING

2880
02:02:55,920 --> 02:02:57,520
IN STROKE REPORT WHICH IS WHERE

2881
02:02:57,520 --> 02:03:00,400
YOU ALL OF THE RESIDENTS AND

2882
02:03:00,400 --> 02:03:01,800
SEVERAL OF THE ATTENDINGS AND

2883
02:03:01,800 --> 02:03:04,080
STROKE ATTENDINGS AND CRITICAL

2884
02:03:04,080 --> 02:03:05,760
CARE IN PARTICULAR SIT AND TALK

2885
02:03:05,760 --> 02:03:06,960
ABOUT PATIENTS AND WHAT WE ARE

2886
02:03:06,960 --> 02:03:09,600
SUPPOSED TO LEARN. THERE ARE

2887
02:03:09,600 --> 02:03:11,240
MANY TIMES I AS THE TRAINEE,

2888
02:03:11,240 --> 02:03:12,520
WOULD BE SITTING IN AND

2889
02:03:12,520 --> 02:03:15,440
LISTENING TO PEOPLE TALK ABOUT A

2890
02:03:15,440 --> 02:03:17,360
PATIENT AND HOW THEY WERE

2891
02:03:17,360 --> 02:03:18,880
RESPONDING, TALK ABOUT THEIR

2892
02:03:18,880 --> 02:03:20,240
LESIONS, PARTICULARLY TALK ABOUT

2893
02:03:20,240 --> 02:03:22,600
WHAT WAS EXPECTED FOR THEIR

2894
02:03:22,600 --> 02:03:24,000
LIFE. AND IT WOULD BE HARD TO

2895
02:03:24,000 --> 02:03:27,000
HEAR. BECAUSE IT WAS JUST LIKE

2896
02:03:27,000 --> 02:03:28,240
OH THIS PERSON'S LIFE IS OVER,

2897
02:03:28,240 --> 02:03:29,560
THEY ARE NOT ABLE TO HAVE A JOB,

2898
02:03:29,560 --> 02:03:32,760
NOT GOING TO BE ABLE TO DO X Y

2899
02:03:32,760 --> 02:03:34,080
AND Z, SOMETIMES IT WOULD BE

2900
02:03:34,080 --> 02:03:36,160
PEOPLE HAVE SIMILAR PATTERNS OF

2901
02:03:36,160 --> 02:03:38,880
DISTRIBUTION OF A STROKE TO MY

2902
02:03:38,880 --> 02:03:41,280
OWN SO THAT WOULD CERTAINLY WAS

2903
02:03:41,280 --> 02:03:43,120
EMOTIONALLY DISTRESSING. I THINK

2904
02:03:43,120 --> 02:03:45,080
THAT I'M LUCKY AND I DID HAVE

2905
02:03:45,080 --> 02:03:48,440
SOME PEOPLE WITHIN MY PROGRAM

2906
02:03:48,440 --> 02:03:49,520
THAT I COULD TALK TO THAT

2907
02:03:49,520 --> 02:03:51,560
PROVIDED MENTORSHIP AND

2908
02:03:51,560 --> 02:03:53,200
ADDITIONAL GUIDANCE AND SUPPORT.

2909
02:03:53,200 --> 02:03:55,880
I SHUTTER TO THINK HOW MANY

2910
02:03:55,880 --> 02:03:57,640
TIMES DISABLED PEOPLE ARE IN THE

2911
02:03:57,640 --> 02:04:00,000
ROOM LISTENING AND HEARING THESE

2912
02:04:00,000 --> 02:04:03,520
CONVERSATIONS. AND UNFORTUNATELY

2913
02:04:03,520 --> 02:04:05,520
INSTANTLY INCREDIBLY AWARE OF

2914
02:04:05,520 --> 02:04:12,280
THE ABLEISM THAT SURROUNDS THEM 

2915
02:04:12,280 --> 02:04:15,520
>>MY EXPERIENCE AT
STANFORD

2916
02:04:15,520 --> 02:04:17,120
WHEN I FROM THE TIME I FIRST

2917
02:04:17,120 --> 02:04:21,120
STARTED THERE, WAS POSITIVE ONE.

2918
02:04:21,120 --> 02:04:23,640
THEY REALLY DIDN'T KNOW EXACTLY

2919
02:04:23,640 --> 02:04:25,520
HOW TO ACCOMMODATE ME AND I

2920
02:04:25,520 --> 02:04:27,280
ENDED UP FIGURING OUT A LOT OF

2921
02:04:27,280 --> 02:04:28,720
MY OWN ACCOMMODATIONS WHICH I

2922
02:04:28,720 --> 02:04:32,720
THINK IS OFTEN THE CASE. I

2923
02:04:32,720 --> 02:04:35,440
CONTINUE TO SELF-ACCOMMODATE, I

2924
02:04:35,440 --> 02:04:38,160
HAVE A VOLUNTEER PROGRAM WHERE

2925
02:04:38,160 --> 02:04:41,360
THESE PREVENT STUDENTS

2926
02:04:41,360 --> 02:04:43,280
GRACIOUSLY VOLUNTEER COCOME AND

2927
02:04:43,280 --> 02:04:44,680
HELP ME AS PERSONAL ASSISTANT

2928
02:04:44,680 --> 02:04:46,440
THROUGHOUT THE DAY. IT IS A

2929
02:04:46,440 --> 02:04:48,760
MUTUALLY BENEFICIAL RELATIONSHIP

2930
02:04:48,760 --> 02:04:52,720
AND CREATES A WIN WIN WHEREAS I

2931
02:04:52,720 --> 02:04:54,200
HAVE THE HELP THAT I NEED TO BE

2932
02:04:54,200 --> 02:04:56,160
MORE EFFICIENT AT MY JOB AND DO

2933
02:04:56,160 --> 02:04:57,480
THE WORKLOAD EQUIVALENT TO MY

2934
02:04:57,480 --> 02:05:01,120
PEERS AND THEY GET MENTORSHIP

2935
02:05:01,120 --> 02:05:03,000
AND CLINICAL EXPERIENCE THAT

2936
02:05:03,000 --> 02:05:04,320
HELPS THEM ON THEIR MEDICAL

2937
02:05:04,320 --> 02:05:05,800
SCHOOL APPLICATIONS.  BUT AGAIN

2938
02:05:05,800 --> 02:05:07,720
THAT IS SOMETHING I DO ON MY

2939
02:05:07,720 --> 02:05:11,360
OWN. FACILITATED BY THE HOSPITAL

2940
02:05:11,360 --> 02:05:13,720
BUT TRY TO MINIMIZE AMOUNT OF

2941
02:05:13,720 --> 02:05:17,880
WORK THEY HAVE TO DO. THAT IS

2942
02:05:17,880 --> 02:05:21,160
SORT OF A COMMON THEME, ALWAYS

2943
02:05:21,160 --> 02:05:22,320
BEING CAREFUL NOT TO ASK FOR TOO

2944
02:05:22,320 --> 02:05:27,800
MUCH. I THIS I THAT ONCE I

2945
02:05:27,800 --> 02:05:32,120
STARTED A SMATIE I HEARD MORE

2946
02:05:32,120 --> 02:05:33,240
ANECDOTES ABOUT DISABILITY

2947
02:05:33,240 --> 02:05:34,200
TREATMENT AT STANFORD AND ACROSS

2948
02:05:34,200 --> 02:05:37,000
THE COUNTRY. I THINK THE IMPACT

2949
02:05:37,000 --> 02:05:38,920
OF A IS WE ENDS UP LOSING GOODS

2950
02:05:38,920 --> 02:05:43,240
PEOPLE, PEOPLE ARE PUSHED TO THE

2951
02:05:43,240 --> 02:05:45,240
BRINK. AND ARE DEMORALIZED

2952
02:05:45,240 --> 02:05:48,880
BECAUSE OF THEIR EXPERIENCES. SO

2953
02:05:48,880 --> 02:05:52,240
ONE OF MY FRIENDS, SHE HAS A

2954
02:05:52,240 --> 02:05:53,520
VISUAL DISABILITY AND HAS BEEN

2955
02:05:53,520 --> 02:05:55,640
TRYING TO GET ACCOMMODATED FOR

2956
02:05:55,640 --> 02:05:58,320
YEARS TO GET THE ELECTRONIC

2957
02:05:58,320 --> 02:06:03,600
MEDICAL RECORDS TO WORK WITH

2958
02:06:03,600 --> 02:06:05,200
THIS SCREEN MAGNIFICATION

2959
02:06:05,200 --> 02:06:07,240
SOFTWARE AND THE RESULT IS THAT

2960
02:06:07,240 --> 02:06:09,520
SHE CAN'T REALLY CHART AT WORK

2961
02:06:09,520 --> 02:06:12,600
SO SHE HAS TO CHART AT HOME LIKE

2962
02:06:12,600 --> 02:06:14,720
SHE IS UP UNTIL MIDNIGHT AT

2963
02:06:14,720 --> 02:06:16,080
NIGHT, IT'S BEEN RECOMMENDED

2964
02:06:16,080 --> 02:06:20,440
THAT SHE RETIRE. THAT MAYBE IT

2965
02:06:20,440 --> 02:06:23,320
IS JUST NOT WORTH IT AND SHE HAS

2966
02:06:23,320 --> 02:06:24,560
BEEN REALLY TOUGH AND DOESN'T

2967
02:06:24,560 --> 02:06:26,120
WANT TO QUIT.  SHE LOVES HER

2968
02:06:26,120 --> 02:06:28,960
JOB. SHE LOVES BEING IN A

2969
02:06:28,960 --> 02:06:33,120
POSITION TO HELP OTHER PEOPLE

2970
02:06:33,120 --> 02:06:35,320
WITH DISABILITY AND USING THAT

2971
02:06:35,320 --> 02:06:36,440
EXPERTISE BUT IT IS DEMORALIZING

2972
02:06:36,440 --> 02:06:39,360
TO KEEP GOING AROUND IN CIRCLES

2973
02:06:39,360 --> 02:06:41,200
AND SO MANY OF OUR -- MY LIGHT

2974
02:06:41,200 --> 02:06:47,280
JUST TURNED OFF. SO MANY OF OUR

2975
02:06:47,280 --> 02:06:50,040
HR SYSTEMS, JUST NOT OPTIMIZE

2976
02:06:50,040 --> 02:06:52,080
FOR EFFICIENCY AND PEOPLE END UP

2977
02:06:52,080 --> 02:06:53,640
RUNNING AROUND MANY CIRCLES AND

2978
02:06:53,640 --> 02:06:56,880
HAVING ALL SORTS OF DELAYS. THE

2979
02:06:56,880 --> 02:06:58,600
RESULT IS THAT PEOPLE QUIT AND

2980
02:06:58,600 --> 02:07:06,520
WE LOSE A LOT OF GOOD FOLKS.

2981
02:07:06,520 --> 02:07:09,480
>>THANK YOU ALL. I WANT
TO MOVE

2982
02:07:09,480 --> 02:07:12,760
TO OUR NEXT TOPIC WHICH IS ONE

2983
02:07:12,760 --> 02:07:15,400
THAT HAS COME UP OVER BOTH DAYS

2984
02:07:15,400 --> 02:07:18,920
OF THIS MEETING, IN SEVERAL OF

2985
02:07:18,920 --> 02:07:20,400
YOUR TALKS AND THAT IS ABOUT

2986
02:07:20,400 --> 02:07:27,680
DISCLOSURE. SO WE TALK ABOUT

2987
02:07:27,680 --> 02:07:29,800
MAKING PROGRESS RECRUITING AN

2988
02:07:29,800 --> 02:07:31,480
RETAINING DISABLED PERSONS IN

2989
02:07:31,480 --> 02:07:33,240
SCIENTIFIC AND MELDCAL WORK

2990
02:07:33,240 --> 02:07:35,000
FORCE UNLESS GOOD BASELINE DATA

2991
02:07:35,000 --> 02:07:37,320
BUT PEOPLE ARE RELUCTANT TO

2992
02:07:37,320 --> 02:07:41,520
DISCLOSE. WE RECOGNIZE IT IS A

2993
02:07:41,520 --> 02:07:42,120
DEEPLY PERSONAL COMPLICATED

2994
02:07:42,120 --> 02:07:44,880
ISSUE. IF YOU ARE WILLING WE

2995
02:07:44,880 --> 02:07:46,600
LOVE THREE OF YOU TO SHARE YOUR

2996
02:07:46,600 --> 02:07:50,280
THOUGHTS ABOUT DISCLOSURE OR

2997
02:07:50,280 --> 02:07:56,240
NON-DISCLOSURE.

2998
02:07:56,240 --> 02:07:59,800
>>I SPECIFICALLY
DISCLOSED I

2999
02:07:59,800 --> 02:08:02,240
WANTED TO TAKE THE TIME TO TALK

3000
02:08:02,240 --> 02:08:05,400
ABOUT HOW DISCLOSE AND WHY IN

3001
02:08:05,400 --> 02:08:06,520
REGARDS TO THIS QUESTION. I'M

3002
02:08:06,520 --> 02:08:08,680
GENERALLY OPEN ABOUT HAVING BEEN

3003
02:08:08,680 --> 02:08:09,640
BORN THREE MONTHS EARLY SIMILAR

3004
02:08:09,640 --> 02:08:11,480
TO KIDS IN MY RESEARCH STUDIES. 

3005
02:08:11,480 --> 02:08:14,520
I WILL DEPEN FEND MY Ph.D.

3006
02:08:14,520 --> 02:08:15,920
NEXT MONTH AND OPEN MY TALKS

3007
02:08:15,920 --> 02:08:17,960
WITH PREMATURITY I PUT MY OWN

3008
02:08:17,960 --> 02:08:19,280
BABY PICTURE ON THE SLIDES.  I

3009
02:08:19,280 --> 02:08:20,640
THINK REALLY THIS IS BENEFITED

3010
02:08:20,640 --> 02:08:22,760
ME, MY OWN HISTORY A LOT IN MY

3011
02:08:22,760 --> 02:08:24,480
CAREECAREER. WHY WHICHENT TO THE

3012
02:08:24,480 --> 02:08:26,760
FIELD TO BEGIN WITH, PROBABLY

3013
02:08:26,760 --> 02:08:27,800
DON'T MEET SIX-YEAR-OLD WHOSE

3014
02:08:27,800 --> 02:08:29,920
WILL TELL YOU I WANT TO BE A

3015
02:08:29,920 --> 02:08:35,320
NEONANEONATOLOGIST, PEOPLE/PUSHE

3016
02:08:35,320 --> 02:08:37,280
IN THAT AREA FOR A LONG TIME.

3017
02:08:37,280 --> 02:08:39,320
PART OF WHY I WAS SO OPEN ABOUT

3018
02:08:39,320 --> 02:08:40,760
THIS, BEFORE I CAME TO IDENTIFY

3019
02:08:40,760 --> 02:08:43,000
AS DISABLED IS BECAUSE PEOPLE

3020
02:08:43,000 --> 02:08:45,720
PERCEIVED SOMETHING LIKE THAT,

3021
02:08:45,720 --> 02:08:47,920
AS BEING IN THE PAST.  I MEAN

3022
02:08:47,920 --> 02:08:50,680
BOTH WHEN I TALK ABOUT IT AND

3023
02:08:50,680 --> 02:08:52,440
ALSO GETTING TO LARGE COMMUNITY

3024
02:08:52,440 --> 02:08:54,840
AND STARTING TO BECOME

3025
02:08:54,840 --> 02:08:56,880
RECOGNIZED THAT THAT IS NOT SO

3026
02:08:56,880 --> 02:08:59,400
TRUE. IN FACT I REMEMBER ONCE

3027
02:08:59,400 --> 02:09:00,920
MANY YEARS AGO SHADOWING WITH

3028
02:09:00,920 --> 02:09:01,640
PEDIATRIC RESIDENT AND SHE

3029
02:09:01,640 --> 02:09:03,640
WANTED TO GO TO NEONATOLOGY, I

3030
02:09:03,640 --> 02:09:05,240
TOLD HER MY STORY AND SHE HAULED

3031
02:09:05,240 --> 02:09:07,040
ME TO SHOW ONE OF HER COLLEAGUES

3032
02:09:07,040 --> 02:09:08,680
AND SAID SEE THEY DON'T ALL GROW

3033
02:09:08,680 --> 02:09:11,920
UP DISABLED. AND I DIDN'T

3034
02:09:11,920 --> 02:09:14,480
IDENTIFY AS DISABLED AT THE TIME

3035
02:09:14,480 --> 02:09:17,560
BUT UNDERSCORES THE IDEA THAT'S

3036
02:09:17,560 --> 02:09:18,400
SPECIALLY SOMETHING -- PEOPLE

3037
02:09:18,400 --> 02:09:20,720
THINK OF IT THAT SOMETHING HAS

3038
02:09:20,720 --> 02:09:22,560
POTENTIAL TO LEAD TO DISABILITY

3039
02:09:22,560 --> 02:09:25,520
AND OWNS EVERYTHING OR DOESN DO.

3040
02:09:25,520 --> 02:09:28,080
RESEARCH IS SHOWING MY RESEARCH

3041
02:09:28,080 --> 02:09:29,800
AND OTHERS IN THE FIELD THIS

3042
02:09:29,800 --> 02:09:31,440
AFFECTS PEOPLE LIFE LONG EVEN IF

3043
02:09:31,440 --> 02:09:34,480
YOU LIKE ME AS MOM SAYS KICKED

3044
02:09:34,480 --> 02:09:36,640
OUT OF PAL CLINIC EARLY FOR

3045
02:09:36,640 --> 02:09:39,160
DOING TOO WELL. SO COMING TO SEE

3046
02:09:39,160 --> 02:09:40,320
THAT, YOU CAN BE AS YOU MIGHT

3047
02:09:40,320 --> 02:09:42,880
SAY A SUCCESS STORY AND DISABLED

3048
02:09:42,880 --> 02:09:45,520
AT THE SAME TIME. SO IN

3049
02:09:45,520 --> 02:09:47,880
PROFESSIONAL SPACES I GO BY THE

3050
02:09:47,880 --> 02:09:49,560
BLANKET DISABLED BECAUSE AS

3051
02:09:49,560 --> 02:09:51,360
TRAINEE I DON'T WANT TO OPEN

3052
02:09:51,360 --> 02:09:53,840
MYSELF UP TO THE DISCRIMINATION

3053
02:09:53,840 --> 02:09:55,320
AND OTHER QUESTIONS AND ISSUES

3054
02:09:55,320 --> 02:09:57,760
THAT WILL COME FROM MORE

3055
02:09:57,760 --> 02:09:59,920
SPECIFIC ABOUT EXACTLY WHAT IS

3056
02:09:59,920 --> 02:10:01,560
DIAGNOSED SINCE MY EARLY DAYS

3057
02:10:01,560 --> 02:10:04,120
AND HOW THAT EFFECT AS THINGS

3058
02:10:04,120 --> 02:10:05,360
UNLESS SOMEONE HAS REASON TO

3059
02:10:05,360 --> 02:10:06,800
KNOW BUT ALSO WANTING TO ADVANCE

3060
02:10:06,800 --> 02:10:08,880
CAUGHT AND TRYING TO KEEP THE

3061
02:10:08,880 --> 02:10:12,240
FOCUS MORE ON PEOPLE I'M TALKING

3062
02:10:12,240 --> 02:10:13,920
AND THE WORK THAT I DO MORE SO

3063
02:10:13,920 --> 02:10:16,320
THAN SPECIFICS OF MY STORY

3064
02:10:16,320 --> 02:10:18,280
IMPACTED.  THAT IS MY LITTLE

3065
02:10:18,280 --> 02:10:24,720
THING TO SAY ABOUT DISCLOSURE.

3066
02:10:24,720 --> 02:10:29,320
>>SO I AT THIS POINT I'M
PRETTY

3067
02:10:29,320 --> 02:10:31,320
-- I DON'T WANT TO SAY CHOOSEY

3068
02:10:31,320 --> 02:10:31,920
HOW I DISCLOSE BUT AT THE SAME

3069
02:10:31,920 --> 02:10:34,560
TIME I FEEL LIKE I'M FAIRLY OPEN

3070
02:10:34,560 --> 02:10:37,240
ABOUT MY OWN PERSONAL HISTORY. 

3071
02:10:37,240 --> 02:10:39,800
MY VIEWS ABOUT DISCLOSURE

3072
02:10:39,800 --> 02:10:41,320
COMPLICATED AS EVERYBODY'S ARE

3073
02:10:41,320 --> 02:10:43,680
BY THE FACT THAT WHEN I FIRST

3074
02:10:43,680 --> 02:10:44,440
HAD MY ILLNESS I DIDN'T FEEL

3075
02:10:44,440 --> 02:10:48,320
LIKE I HAD A CHOICE TO DISCLOSE.

3076
02:10:48,320 --> 02:10:51,240
I WAS IN RESIDENCY WHEN I

3077
02:10:51,240 --> 02:10:52,720
FINALLY ACCURATELY GOT A

3078
02:10:52,720 --> 02:10:54,640
DIAGNOSIS AN HAD TO START HAVING

3079
02:10:54,640 --> 02:10:55,640
SURGERIES AN AS EVERYBODY WHO

3080
02:10:55,640 --> 02:10:57,040
HAS BEEN THROUGH MEDICAL

3081
02:10:57,040 --> 02:10:59,720
TRAINING UNDERSTANDS, RESIDENCY

3082
02:10:59,720 --> 02:11:01,160
SCHEDULES ARE SET A YEAR IN

3083
02:11:01,160 --> 02:11:03,960
ADVANCE. YOU DON'T HAVE OTHER

3084
02:11:03,960 --> 02:11:06,360
FACTORS BUILT IN, THERE ISN'T

3085
02:11:06,360 --> 02:11:09,160
PUSH IN TIME, I CAN'T JUST TAKE

3086
02:11:09,160 --> 02:11:11,360
TIME OFF BY ME BEING OUT TO

3087
02:11:11,360 --> 02:11:12,600
RECOVER FOR SURGERY THAT MEANT

3088
02:11:12,600 --> 02:11:15,000
OTHER RESIDENTS WERE GOING TO BE

3089
02:11:15,000 --> 02:11:16,720
TO HAVE TO BE PUT IN PLACE WHERE

3090
02:11:16,720 --> 02:11:18,680
I WAS SUPPOSED TO BE IN SCHEDULE

3091
02:11:18,680 --> 02:11:20,920
SO I WASN'T I COMPLETELY HIDE OR

3092
02:11:20,920 --> 02:11:22,120
NOT TELL ANYBODY WHAT WAS GOING

3093
02:11:22,120 --> 02:11:23,800
ON, I HAD TO TELL PEOPLE I HAD

3094
02:11:23,800 --> 02:11:25,560
TO BE AWAY AN HAD TO HAVE A GOOD

3095
02:11:25,560 --> 02:11:26,640
REASON AND USUALLY THE ONLY

3096
02:11:26,640 --> 02:11:28,080
REASONS WERE YOU ARE SICK, YOU

3097
02:11:28,080 --> 02:11:31,560
ARE PREGNANT, OR SOMEONE DIED. 

3098
02:11:31,560 --> 02:11:35,760
SO I KIND OF TOLD FIRST MY

3099
02:11:35,760 --> 02:11:37,040
PROGRAM DIRECTORS AND MY CHIEF

3100
02:11:37,040 --> 02:11:39,560
RESIDENCES WHAT WAS GOING ON,

3101
02:11:39,560 --> 02:11:41,760
AND BEING A SMALL PROGRAM,

3102
02:11:41,760 --> 02:11:45,400
DESPITE THE FACT THAT PEOPLE ARE

3103
02:11:45,400 --> 02:11:48,040
SUPPOSED TO I GUESS KEEP THINGS

3104
02:11:48,040 --> 02:11:49,160
CONFIDENTIAL, THAT IS PART OF

3105
02:11:49,160 --> 02:11:50,960
OUR TRAINING TOO, THAT IS NOT

3106
02:11:50,960 --> 02:11:52,840
HOW IT WORKS IN RESIDENCY EITHER

3107
02:11:52,840 --> 02:11:53,840
EVERYBODY KNOW'S EVERYBODY'S

3108
02:11:53,840 --> 02:11:57,480
BUSINESS QUICKLY. SO AT FIRST IT

3109
02:11:57,480 --> 02:11:58,920
WAS ABOUT JUST LOGISTICALLY

3110
02:11:58,920 --> 02:12:00,280
TRYING TO MAKE SURE THAT

3111
02:12:00,280 --> 02:12:02,080
EVERYBODY KNEW WHAT WAS GOING ON

3112
02:12:02,080 --> 02:12:07,000
SO THAT I COULD GET MY SHIFT

3113
02:12:07,000 --> 02:12:09,520
COVERED. THERE WAS ALSO WHEN I

3114
02:12:09,520 --> 02:12:11,720
WAS SICK I GOT MY TREATMENT AT

3115
02:12:11,720 --> 02:12:13,120
THE ONE OF THE HOSPITALS WHERE

3116
02:12:13,120 --> 02:12:16,680
WE WORKED. SO IT WAS SEEN FOR ME

3117
02:12:16,680 --> 02:12:17,960
I GUESS YOU COULD SAY TO BE ABLE

3118
02:12:17,960 --> 02:12:20,680
TO GET MY CARE THERE. AT THE

3119
02:12:20,680 --> 02:12:22,000
SAME TIME BECAUSE I WAS

3120
02:12:22,000 --> 02:12:23,320
HOSPITALIZED IN THE HOSPITAL I

3121
02:12:23,320 --> 02:12:26,000
WORKED THAT MEANT THAT MY

3122
02:12:26,000 --> 02:12:28,360
COLLEAGUES ATTENDINGS, WHOEVER,

3123
02:12:28,360 --> 02:12:31,760
COULD COME BY AND SEE ME ON DAYS

3124
02:12:31,760 --> 02:12:33,400
WHEN I WAS HOSPITALIZED. 

3125
02:12:33,400 --> 02:12:34,840
EVERYBODY KNEW WHERE I WAS. AND

3126
02:12:34,840 --> 02:12:37,920
AGAIN I THINK THAT SOMETIMES WE

3127
02:12:37,920 --> 02:12:39,840
IN HEALTHCARE DON'T DO A GOOD

3128
02:12:39,840 --> 02:12:42,040
JOB UNDERSTANDING WHERE BARRIER

3129
02:12:42,040 --> 02:12:43,320
-- WHERE BOUNDARIES LIE. AND

3130
02:12:43,320 --> 02:12:45,600
WHERE THEY SHOULD LIE.  BETWEEN

3131
02:12:45,600 --> 02:12:46,560
COLLEAGUES, BETWEEN YOUR

3132
02:12:46,560 --> 02:12:49,160
PATIENTS, WHAT HAVE YOU. SO

3133
02:12:49,160 --> 02:12:51,600
ALREADY DEFINITELY CROSS

3134
02:12:51,600 --> 02:12:53,200
BOUNDARIES, PEOPLE WHO CAME TO

3135
02:12:53,200 --> 02:12:54,400
SEE ME WHEN THEY SHOULDN'T.

3136
02:12:54,400 --> 02:12:56,120
PEOPLE WHO LEARNED ABOUT WHAT IS

3137
02:12:56,120 --> 02:12:57,960
GOING ON WITH ME, AGAIN WHEN

3138
02:12:57,960 --> 02:12:59,240
THEY SHOULDN'T AND WHO KNEW MUCH

3139
02:12:59,240 --> 02:13:01,240
MORE ABOUT ME AND MY HEALTHCARE

3140
02:13:01,240 --> 02:13:02,080
CONDITION THAN I FELT

3141
02:13:02,080 --> 02:13:04,000
COMFORTABLE WITH AT THE TIME AND

3142
02:13:04,000 --> 02:13:05,000
DIDN'T UNDERSTAND HOW TO

3143
02:13:05,000 --> 02:13:08,400
ARTICULATE THOSE FEELINGS.  AT

3144
02:13:08,400 --> 02:13:09,560
FIRST IT FELT LIKE EVERYBODY

3145
02:13:09,560 --> 02:13:11,040
KNEW WHAT WAS GOING ON WITH ME

3146
02:13:11,040 --> 02:13:13,360
AND MY BODY EXCEPT FOR ME

3147
02:13:13,360 --> 02:13:15,800
SOMETIMES PARTICULARLY WHEN I

3148
02:13:15,800 --> 02:13:17,680
WAS STILL FRESHLY HAD A STROKE

3149
02:13:17,680 --> 02:13:21,160
INTUBATED SEDATED AND IN THE ICU

3150
02:13:21,160 --> 02:13:22,120
PEOPLE MYWHAT WAS GOING ON WHEN

3151
02:13:22,120 --> 02:13:24,560
I LITERALLY WAS STILL IN

3152
02:13:24,560 --> 02:13:28,360
TWILIGHT. AFTER I STARTED COMING

3153
02:13:28,360 --> 02:13:30,840
BACK TO WORK AND STARTED REALLY

3154
02:13:30,840 --> 02:13:34,440
TRYING TO GET MY FEET BACK UNDER

3155
02:13:34,440 --> 02:13:35,160
ME AND FEW BURR WHAT I WAS GOING

3156
02:13:35,160 --> 02:13:37,080
TO DO WITH MYSELF AND MY CAREER,

3157
02:13:37,080 --> 02:13:38,480
AGAIN, A LOT OF PEOPLE KNEW WHAT

3158
02:13:38,480 --> 02:13:39,440
WAS GOING ON WITH ME BEFORE I

3159
02:13:39,440 --> 02:13:43,480
HAD THE CHANCE TO DISCLOSE BUT

3160
02:13:43,480 --> 02:13:45,200
WHEN IT CAME TIME TO MEET

3161
02:13:45,200 --> 02:13:47,680
ACCOMMODATIONS, SUDDENLY PEOPLE

3162
02:13:47,680 --> 02:13:50,400
DIDN'T UNDERSTAND WHY WE NEED

3163
02:13:50,400 --> 02:13:52,360
ACCOMMODATION, THOUGH THEY HAD

3164
02:13:52,360 --> 02:13:53,880
LITERALLY SEEN ME WHEN I WAS IN

3165
02:13:53,880 --> 02:13:55,520
ICU OR LOOK AT MY SKINS WHEN

3166
02:13:55,520 --> 02:13:57,200
THEY SHOULDN'T HAVE OR TALKED TO

3167
02:13:57,200 --> 02:13:58,280
MY FAMILY, MAYBE WHEN I CROSSED

3168
02:13:58,280 --> 02:13:59,040
THE BOUNDARY THEY SHOULDN'T

3169
02:13:59,040 --> 02:14:05,440
HAVE. SO AT FIRST I AGAIN WAS

3170
02:14:05,440 --> 02:14:10,480
PROTECTIVE, OF MYSELF AND

3171
02:14:10,480 --> 02:14:12,520
INFORMATION AND DISABILITY. BUT

3172
02:14:12,520 --> 02:14:14,320
I KIND OF GOT TO THE POINT WHERE

3173
02:14:14,320 --> 02:14:16,520
I WAS KIND OF LIKE EVERYBODY

3174
02:14:16,520 --> 02:14:18,440
KNOWS I HAVE THINGS THAT I NEED

3175
02:14:18,440 --> 02:14:21,000
AND IF I DON'T SAY THAT I NEED

3176
02:14:21,000 --> 02:14:22,080
THESE KIND OF ACCOMMODATIONS

3177
02:14:22,080 --> 02:14:23,360
NOBODY IS GOING TO FIGHT FOR ME

3178
02:14:23,360 --> 02:14:27,160
SO I GOT TO BE THE ONE TO DO SO 

3179
02:14:27,160 --> 02:14:29,560
SO THAT POINT I STARTED GETTING

3180
02:14:29,560 --> 02:14:32,640
MUCH MORE PURPOSEFUL TALKING

3181
02:14:32,640 --> 02:14:35,120
ABOUT ACCOMMODATION NEEDS,

3182
02:14:35,120 --> 02:14:35,920
ACCESSIBILITY NEEDS AND

3183
02:14:35,920 --> 02:14:38,080
ULTIMATELY TALKING DISABILITY,

3184
02:14:38,080 --> 02:14:40,640
IT WASN'T REALLY UNTIL I STARTED

3185
02:14:40,640 --> 02:14:42,600
TO IDENTIFY AS A PERSON WHO IS

3186
02:14:42,600 --> 02:14:43,880
DISABLED UNTIL I STARTED

3187
02:14:43,880 --> 02:14:48,920
SPENDING MORE TIME IN DISABILITY

3188
02:14:48,920 --> 02:14:52,920
SPACES SO TRAINEE EDUCATION AND

3189
02:14:52,920 --> 02:14:53,880
RELATED DISABILITY TRAINEE, BUT

3190
02:14:53,880 --> 02:14:55,360
THAT WAS THE FIRST TIME BEING IN

3191
02:14:55,360 --> 02:14:57,160
THAT SPACE WITH OTHER DISABLED

3192
02:14:57,160 --> 02:14:58,680
PEOPLE WHO FEEL SELF-ADVOCATES

3193
02:14:58,680 --> 02:15:00,080
WORKING IN THEIR RESPECTIVE

3194
02:15:00,080 --> 02:15:01,800
FIELDS WHO COULD TALK ABOUT

3195
02:15:01,800 --> 02:15:04,000
DISABILITY AS IF IT WASN'T A BAD

3196
02:15:04,000 --> 02:15:04,880
WORD I PERSONALLY STARTED TO

3197
02:15:04,880 --> 02:15:06,000
FEEL MORE COMFORTABLE TALKING

3198
02:15:06,000 --> 02:15:08,120
ABOUT MYSELF BEING DISABLED. 

3199
02:15:08,120 --> 02:15:09,840
AND NOW AGAIN, ON THE ONE HAND I

3200
02:15:09,840 --> 02:15:11,480
DON'T TELL EVERYBODY ALL THE

3201
02:15:11,480 --> 02:15:12,400
TIME, BUT I FEEL MORE

3202
02:15:12,400 --> 02:15:14,440
COMFORTABLE TELLING MANY I

3203
02:15:14,440 --> 02:15:16,400
COLLEAGUES, TRAINEES, ALL MY

3204
02:15:16,400 --> 02:15:17,880
TRAINEES AND COLLEAGUES AT THIS

3205
02:15:17,880 --> 02:15:19,320
POINT KNOW A LITTLE BIT ABOUT MY

3206
02:15:19,320 --> 02:15:22,640
HISTORY AND I TALK ABOUT TO

3207
02:15:22,640 --> 02:15:24,600
NORMALIZE IT PARTLY AND TO

3208
02:15:24,600 --> 02:15:25,560
PARTLY AGAIN HELP THEM

3209
02:15:25,560 --> 02:15:27,040
UNDERSTAND WHERE BARRIERS ARE

3210
02:15:27,040 --> 02:15:30,040
AND THE PERSONAL ASPECTS AROUND

3211
02:15:30,040 --> 02:15:32,000
DISCLOSURE. I ALSO SOMETIMES

3212
02:15:32,000 --> 02:15:34,600
DISPOSED OF PATIENTS AS --

3213
02:15:34,600 --> 02:15:36,360
DISCLOSED TO PATIENTS AS WELL,

3214
02:15:36,360 --> 02:15:38,400
THAT IS ALSO PEOPLE DEBATE

3215
02:15:38,400 --> 02:15:39,240
WHETHER YOU SHOULD DO THAT AS

3216
02:15:39,240 --> 02:15:41,160
CLINIC. I DON'T DO IT WITH EVERY

3217
02:15:41,160 --> 02:15:42,600
PATIENT BUT TIMES I HAVE I FEEL

3218
02:15:42,600 --> 02:15:45,240
LIKE IT HAS ONLY STRENGTHENED

3219
02:15:45,240 --> 02:15:47,400
OUR RELATIONSHIP SO AGAIN,

3220
02:15:47,400 --> 02:15:49,720
PATIENTS CAN SEE HEY, YOU CAN

3221
02:15:49,720 --> 02:15:52,280
ABSOLUTELY BE DISABLED AND

3222
02:15:52,280 --> 02:15:53,320
HEALTHY, YES DISABLED AND HAVE

3223
02:15:53,320 --> 02:15:54,880
THE CAREER THAT YOU WANT, YES

3224
02:15:54,880 --> 02:15:57,200
YOU CAN BE DISABLED AND EXIST AS

3225
02:15:57,200 --> 02:16:00,240
A PERSON.  SO THOSE ARE MY

3226
02:16:00,240 --> 02:16:05,760
THOUGHTS ABOTHOUGHTS ABOUT IT.

3227
02:16:05,760 --> 02:16:07,680
>>DISCLOSURE WASN'T EVER
REALLY

3228
02:16:07,680 --> 02:16:10,880
A QUESTION FOR ME. I THINK THAT

3229
02:16:10,880 --> 02:16:13,400
WELL, NUMBER ONE WHEN YOU SEE ME

3230
02:16:13,400 --> 02:16:15,000
I'M QUITE VISIBLY DISABLED

3231
02:16:15,000 --> 02:16:18,640
WALKING WITH CRUTCHES OR ON MY

3232
02:16:18,640 --> 02:16:21,360
SEGUE. BUT WHEN I DECIDED TO

3233
02:16:21,360 --> 02:16:22,880
SWITCH RESIDENCIES I HAD TO

3234
02:16:22,880 --> 02:16:23,880
WRITE A PERSONAL STATEMENT OF

3235
02:16:23,880 --> 02:16:26,840
COURSE AND I INCLUDED IN THERE

3236
02:16:26,840 --> 02:16:28,760
MY OWN PERSONAL STORY WITH

3237
02:16:28,760 --> 02:16:30,360
SPINAL CORD INJURY AN WHY I WAS

3238
02:16:30,360 --> 02:16:35,200
SWITCHING FIELDS. I USED MY

3239
02:16:35,200 --> 02:16:40,440
STORY IN A SENSE TO ILLUSTRATE

3240
02:16:40,440 --> 02:16:42,600
MY STRENGTH AND MY RESILIENCE. I

3241
02:16:42,600 --> 02:16:45,040
DON'T REALLY PARTICULARLY LIKE

3242
02:16:45,040 --> 02:16:47,320
THESE OVERCOMING NARRATIVES OR

3243
02:16:47,320 --> 02:16:50,080
INSPIRATIONAL NARRATIVES BUT I

3244
02:16:50,080 --> 02:16:51,800
THINK THAT WITH THOUGHT ONE CAN

3245
02:16:51,800 --> 02:16:56,320
SHARE ONE STORY AND SHOW IT HOW

3246
02:16:56,320 --> 02:16:57,720
DISABILITY HAS ACTUALLY -- IS

3247
02:16:57,720 --> 02:17:00,440
ACTUALLY A STRENGTH AND HOW IT

3248
02:17:00,440 --> 02:17:06,000
GIVES INSIGHTS AND REALLY INSIDE

3249
02:17:06,000 --> 02:17:07,920
VIEW OF HEALTHCARE FROM THE

3250
02:17:07,920 --> 02:17:10,520
INSIDE. THAT IS INSTRUMENTAL

3251
02:17:10,520 --> 02:17:13,560
IMPROVING THE HEALTHCARE OF

3252
02:17:13,560 --> 02:17:16,520
PATIENTS WITH DISABILITIES. I

3253
02:17:16,520 --> 02:17:18,480
USED TO OVERSHARE IN THE

3254
02:17:18,480 --> 02:17:21,400
BEGINNING. I DIDN'T REALLY KNOW

3255
02:17:21,400 --> 02:17:23,440
WHERE ON THE DISCLOSURE SPECTRUM

3256
02:17:23,440 --> 02:17:27,520
I SHOULD LAND. SO I THINK THAT I

3257
02:17:27,520 --> 02:17:28,920
WAS DEFINITELY OVERSHARING, A

3258
02:17:28,920 --> 02:17:30,080
FEW TIMES PROGRAM DIRECTOR WAS

3259
02:17:30,080 --> 02:17:31,360
LIKE YOU DON'T HAVE TO TELL ME

3260
02:17:31,360 --> 02:17:35,480
ALL OF THIS STUFF. AND SO I SORT

3261
02:17:35,480 --> 02:17:39,680
OF LEARNED OVER TIME I DON'T

3262
02:17:39,680 --> 02:17:40,720
TALK ABOUT MY PERSONAL

3263
02:17:40,720 --> 02:17:44,320
EXPERIENCE THAT MUCH. WITH MY

3264
02:17:44,320 --> 02:17:46,760
COLLEAGUES. I DO IN LECTURES

3265
02:17:46,760 --> 02:17:50,000
SOMETIMES I USE PHOTOS OF

3266
02:17:50,000 --> 02:17:55,400
MYSELF. AND MY PATH TO

3267
02:17:55,400 --> 02:17:57,040
ILLUSTRATE WHAT I HAVE BEEN

3268
02:17:57,040 --> 02:18:00,000
THROUGH. I DO A LECTURE, GIVE A

3269
02:18:00,000 --> 02:18:03,080
LECTURE ONCE A YEAR TO THE

3270
02:18:03,080 --> 02:18:06,240
MEDICAL STUDENTS WHO ARE

3271
02:18:06,240 --> 02:18:07,560
STARTING THIRD YEAR PHYSICIAN

3272
02:18:07,560 --> 02:18:11,040
AND PATIENT AND I USE ANECDOTES

3273
02:18:11,040 --> 02:18:15,040
FROM MY HOSPITALIZATIONS TO

3274
02:18:15,040 --> 02:18:17,200
ILLUSTRATE POINTS ABOUT WHAT

3275
02:18:17,200 --> 02:18:19,360
PEOPLE HAVE DONE THAT WAS

3276
02:18:19,360 --> 02:18:21,200
SUCCESSFUL OR INTERACTIONS THAT

3277
02:18:21,200 --> 02:18:25,760
WERE MEANINGFUL OR HELPFUL. AND

3278
02:18:25,760 --> 02:18:26,600
ALSO ILLUSTRATE SOME THINGS THAT

3279
02:18:26,600 --> 02:18:30,840
HAPPEN TO ME THAT WERE NOT SO

3280
02:18:30,840 --> 02:18:34,840
GREAT. I USE MY NARRATIVE, I

3281
02:18:34,840 --> 02:18:37,000
THINK, AS A TOOL. I USE IT

3282
02:18:37,000 --> 02:18:38,080
DEPENDING ON THE SITUATION IN A

3283
02:18:38,080 --> 02:18:41,720
WAY THAT I THINK WILL BENEFIT ME

3284
02:18:41,720 --> 02:18:46,560
OR BENEFIT OTHERS. THERE IS A

3285
02:18:46,560 --> 02:18:48,120
TERM CALLED POLITICAL

3286
02:18:48,120 --> 02:18:50,360
DISCLOSURE, I LEARNED FROM

3287
02:18:50,360 --> 02:18:52,360
(INAUDIBLE) JANE PEOPLE DISCLOSE

3288
02:18:52,360 --> 02:18:55,920
NOT JUST TO UNLOCK THEIR OWN

3289
02:18:55,920 --> 02:18:59,800
ACCOMMODATIONS BUT TO LIKE DIANA

3290
02:18:59,800 --> 02:19:03,160
AND PEPPAR WERE SAYING DECREASE

3291
02:19:03,160 --> 02:19:04,360
STIGMA AROUND DISABILITY O

3292
02:19:04,360 --> 02:19:06,440
NORMALIZE DISABILITY TO

3293
02:19:06,440 --> 02:19:08,280
ENCOURAGE OTHERS TO DISCLOSE. SO

3294
02:19:08,280 --> 02:19:12,920
I WOULD SAY THAT ALSO SOME

3295
02:19:12,920 --> 02:19:15,760
PEOPLE MAY NOT EVEN REALIZE THEY

3296
02:19:15,760 --> 02:19:17,480
ARE DISCLOSING OR THAT SOMEONE

3297
02:19:17,480 --> 02:19:20,120
IS DISCLOSING TO THEM. I THIS IS

3298
02:19:20,120 --> 02:19:21,120
IT IS IMPORTANT TO EDUCATE

3299
02:19:21,120 --> 02:19:24,920
PEOPLE ON WHAT CONSTITUTES A

3300
02:19:24,920 --> 02:19:26,760
DISABILITY. IT DOESN'T HAVE TO

3301
02:19:26,760 --> 02:19:28,760
BE IN A WHEELCHAIR OR BLIND OR

3302
02:19:28,760 --> 02:19:31,480
DEAF, THAT THERE IS A PLETHORA

3303
02:19:31,480 --> 02:19:32,600
OF DIVERSITY WITHIN DISABILITY

3304
02:19:32,600 --> 02:19:34,960
AND TO TELL PEOPLE TO ENCOURAGE

3305
02:19:34,960 --> 02:19:39,960
PEOPLE IF THEY ARE HAVING

3306
02:19:39,960 --> 02:19:40,840
IMPAIRMENT OR CONDITION THAT

3307
02:19:40,840 --> 02:19:43,640
SOME WAY LIMITS THEIR

3308
02:19:43,640 --> 02:19:44,600
ACTIVITIES, THAT THAT COUNTS AS

3309
02:19:44,600 --> 02:19:46,720
A DISABILITY. AND SAYING THAT

3310
02:19:46,720 --> 02:19:48,160
WORD OR UNDERSTANDING THAT WORDS

3311
02:19:48,160 --> 02:19:53,320
IF YOU ARE A UP SUPERVISOR

3312
02:19:53,320 --> 02:19:55,200
UNLOCKS KEY TO ACCOMMODATIONS AN

3313
02:19:55,200 --> 02:19:57,960
LETS EVERYBODY KNOW THAT THIS IS

3314
02:19:57,960 --> 02:20:00,680
A PROTECTED ZONE BUT THE LAW IS

3315
02:20:00,680 --> 02:20:04,560
PROTECTING THIS INTERACTION. AND

3316
02:20:04,560 --> 02:20:08,800
THE PERSON HAS A RIGHT. IT PUTS

3317
02:20:08,800 --> 02:20:14,800
EVERYBODY ON ALERT AND ATTENTION

3318
02:20:14,800 --> 02:20:16,240
H. THEY HAVE AN OBLIGATION TO

3319
02:20:16,240 --> 02:20:17,600
HELP THAT PERSON ACCORDING TO

3320
02:20:17,600 --> 02:20:20,160
THE LAW. THE LAST SLIDE I HAVE

3321
02:20:20,160 --> 02:20:21,960
ABOUT DISCLOSURE, IT IS

3322
02:20:21,960 --> 02:20:22,920
IMPORTANT ABOUT THE SYSTEMS WE

3323
02:20:22,920 --> 02:20:24,840
HAVE IN PLACE ENCOURAGE

3324
02:20:24,840 --> 02:20:26,800
DISCLOSURE, THAT THERE IS A

3325
02:20:26,800 --> 02:20:29,160
SYSTEM WHERE BRING BIA PERSON

3326
02:20:29,160 --> 02:20:30,560
DISCLOSES TO AN APPROPRIATE

3327
02:20:30,560 --> 02:20:33,080
PERSON, NOT NECESSARILY A DIRECT

3328
02:20:33,080 --> 02:20:34,760
SUPERVISOR OR PROGRAM DIRECTOR,

3329
02:20:34,760 --> 02:20:36,360
OR THEY ARE NOT FORCED TO MAKE

3330
02:20:36,360 --> 02:20:40,600
REPEATED DISCLOSURES TO MULTIPLE

3331
02:20:40,600 --> 02:20:43,120
SUPERVISORS. ALLEGATION TO MAKE

3332
02:20:43,120 --> 02:20:45,560
HOUR THE PROCESS ISN'T ONEROUS

3333
02:20:45,560 --> 02:20:46,840
AND THAT AFTER ACCOMMODATIONS

3334
02:20:46,840 --> 02:20:51,480
ARE PUT IN PLACE, THAT THERE IS

3335
02:20:51,480 --> 02:20:54,080
FOLLOW-UP. AND THAT IS A

3336
02:20:54,080 --> 02:20:56,480
CONSTANT ITERATIVE INTERACTIVE

3337
02:20:56,480 --> 02:20:59,920
PROCESS. 

3338
02:20:59,920 --> 02:21:01,480
>>THANK YOU ALL THREE OF
YOU.

3339
02:21:01,480 --> 02:21:04,960
SO THE NEXT QUESTION IS ONE WE

3340
02:21:04,960 --> 02:21:06,200
PLANNED BUT ONE SOME OF YOU

3341
02:21:06,200 --> 02:21:09,520
TOUCHED ON ALREADY SO WE CAN

3342
02:21:09,520 --> 02:21:11,640
MAKE RELATIVELY BRIEF AND MOVE

3343
02:21:11,640 --> 02:21:14,640
TO AUDIENCE QUESTIONS.  WHAT I

3344
02:21:14,640 --> 02:21:16,080
HAVE IN MY NOTES IS WE TALKED

3345
02:21:16,080 --> 02:21:18,560
ABOUT HOW ONE OF THE REASONS

3346
02:21:18,560 --> 02:21:20,400
PEOPLE ARE RELUCTANT TO DISCLOSE

3347
02:21:20,400 --> 02:21:21,840
IS BECAUSE OF THEIR EXPERIENCES

3348
02:21:21,840 --> 02:21:24,880
FOLLOWING DISCLOSURE. WHETHER

3349
02:21:24,880 --> 02:21:27,400
THAT IS DISCRIMINATION, STIGMA,

3350
02:21:27,400 --> 02:21:29,600
WHETHER THAT IS ADMINISTRATIVE

3351
02:21:29,600 --> 02:21:32,440
OR PROCEDURAL BARRIERS. ANY

3352
02:21:32,440 --> 02:21:34,640
ADDITIONAL THOUGHTS HOW WE

3353
02:21:34,640 --> 02:21:36,880
IMPROVE PEOPLE'S EXPERIENCES

3354
02:21:36,880 --> 02:21:41,000
FOLLOWING DISCLOSURE?

3355
02:21:41,000 --> 02:21:44,000
>>BRIEFLY I WOULD SAY ASK
WHAT

3356
02:21:44,000 --> 02:21:47,760
WE WANT TO GET OUT OF THIS,

3357
02:21:47,760 --> 02:21:49,200
DISCLOSURE OR TRYING TO EDUCATE

3358
02:21:49,200 --> 02:21:52,080
THE OTHER PERSON OR

3359
02:21:52,080 --> 02:21:52,640
ACCOMMODATIONS AN RECOGNIZE

3360
02:21:52,640 --> 02:21:53,240
DISABILITY SOMEONE HAD FOR A

3361
02:21:53,240 --> 02:21:54,880
LONG TIME, THE PERSON HAS A GOOD

3362
02:21:54,880 --> 02:21:56,240
IDEA WHAT THEY NEED AND THEY

3363
02:21:56,240 --> 02:21:58,240
HAVE BEEN ABLE TO GET THIS FOR

3364
02:21:58,240 --> 02:21:59,520
OUR 60 DAY IN THAT YOU ARE SPACE

3365
02:21:59,520 --> 02:22:01,720
SO DON'T DISCOUNT SOMEONE'S --

3366
02:22:01,720 --> 02:22:03,200
BECAUSE NOW YOU KNOW THEY ALSO

3367
02:22:03,200 --> 02:22:07,760
HAD A DISABILITY ALONG THE WAY. 

3368
02:22:07,760 --> 02:22:09,400
>>I HAVE TO SAY ONE THING
WE

3369
02:22:09,400 --> 02:22:11,000
SHALL DO IS ANTICIPATE THAT

3370
02:22:11,000 --> 02:22:15,760
DISCLOSURE MIGHT HAPPEN. AND

3371
02:22:15,760 --> 02:22:17,720
RECOGNIZE DISABLED PEOPLE ARE

3372
02:22:17,720 --> 02:22:19,040
ALREADY HERE IN MEDICINE.

3373
02:22:19,040 --> 02:22:20,240
SOMETHING THAT SAFER FOR PEOPLE

3374
02:22:20,240 --> 02:22:24,480
TO DISCLOSE.  RATHER THAN THE

3375
02:22:24,480 --> 02:22:26,760
WORK ON THE BACK END.

3376
02:22:26,760 --> 02:22:29,880
>>PUTTING SYSTEMS IN
PLACE

3377
02:22:29,880 --> 02:22:32,080
WHERE TAKES THE ONUS OFF

3378
02:22:32,080 --> 02:22:33,880
DISABLED PERSON, LIKE I SAID

3379
02:22:33,880 --> 02:22:37,360
EARLIER TO DISCLOSE REPEATEDLY

3380
02:22:37,360 --> 02:22:39,840
BUT OFFICES OF ACCESSIBLE

3381
02:22:39,840 --> 02:22:41,760
EDUCATION SHOULD HAVE STAFF TO

3382
02:22:41,760 --> 02:22:43,560
FACILITATE THIS SORT OF

3383
02:22:43,560 --> 02:22:45,800
COMMUNICATION TO ENSURE THE

3384
02:22:45,800 --> 02:22:47,640
RIGHT PEOPLE ONLY PROPER PEOPLE

3385
02:22:47,640 --> 02:22:49,360
ARE AWARE OF THE ACCOMMODATIONS

3386
02:22:49,360 --> 02:22:53,240
THAT ARE NEEDED. AND THAT DON'T

3387
02:22:53,240 --> 02:22:55,680
OVERSHARE THE WHY THEY NEED

3388
02:22:55,680 --> 02:22:57,480
ACCOMMODATIONS. THAT TO EDUCATE

3389
02:22:57,480 --> 02:22:59,200
PEOPLE THAT IT IS NOT

3390
02:22:59,200 --> 02:23:00,680
APPROPRIATE TO ASK PERSONAL

3391
02:23:00,680 --> 02:23:01,840
QUESTIONS ABOUT WHAT IS

3392
02:23:01,840 --> 02:23:03,960
DISABILITY OR THAT WHEN YOU HAVE

3393
02:23:03,960 --> 02:23:06,080
A DISABLED STUDENT OR RESIDENT

3394
02:23:06,080 --> 02:23:08,280
YOU APPROACH THEM AS A PATIENT,

3395
02:23:08,280 --> 02:23:10,920
ESPECIALLY IF THEY HAVE UNKNOWN

3396
02:23:10,920 --> 02:23:12,440
DIAGNOSIS AND PROBING AND

3397
02:23:12,440 --> 02:23:13,880
PRODDING AND TRYING TO FIGURE

3398
02:23:13,880 --> 02:23:15,520
OUT QUOTE UNQUOTE WHAT IS WRONG

3399
02:23:15,520 --> 02:23:17,160
WITH THEM. BUT ACCORDING TO THE

3400
02:23:17,160 --> 02:23:19,320
LAW, THIS HAS TO BE AN

3401
02:23:19,320 --> 02:23:20,400
INTERACTIVE PROCESS. IT IS NOT

3402
02:23:20,400 --> 02:23:23,000
JUST A ONE AND DONE. YOU DON'T

3403
02:23:23,000 --> 02:23:26,400
DISCLOSE GET ACCOMMODATIONS AND

3404
02:23:26,400 --> 02:23:27,720
IMPLEMENT THEM BUT YET YOU ARE

3405
02:23:27,720 --> 02:23:30,440
OBLIGATED TO FOLLOW-UP AND TO

3406
02:23:30,440 --> 02:23:32,560
MAKE SURE THAT THE

3407
02:23:32,560 --> 02:23:33,840
ACCOMMODATIONS ARE EFFECTIVE AND

3408
02:23:33,840 --> 02:23:36,320
IF CHANGES NEED TO BE MADE TO

3409
02:23:36,320 --> 02:23:39,280
MAKE THEM. IT IS NOT ENOUGH TO

3410
02:23:39,280 --> 02:23:40,800
JUST HAND A STUDENT A LETTER AND

3411
02:23:40,800 --> 02:23:46,400
SEND THEM ON THEIR WAY. 

3412
02:23:46,400 --> 02:23:49,320
>>I AM GOING TO MOVE TO
THE

3413
02:23:49,320 --> 02:23:51,760
QUESTIONS IN THE Q&A. I WANT
TO

3414
02:23:51,760 --> 02:23:53,080
ACKNOWLEDGE OFF BAT THERE ARE

3415
02:23:53,080 --> 02:23:55,040
AMAZING QUESTIONS HERE, WE ARE

3416
02:23:55,040 --> 02:23:57,200
NOT GOING TO GET TO ALL OF THEM.

3417
02:23:57,200 --> 02:23:58,680
I THINK WHAT WE ARE GOING TO DO

3418
02:23:58,680 --> 02:24:01,600
IS GET TO AS MANY AS WE CAN AND

3419
02:24:01,600 --> 02:24:03,840
WE WILL CIRCULATE THE QUESTIONS

3420
02:24:03,840 --> 02:24:06,240
TO OUR PANELISTS AN TO THE

3421
02:24:06,240 --> 02:24:07,160
PARTICIPANTS AFTER THE MEETING

3422
02:24:07,160 --> 02:24:10,160
AND GIVE PEOPLE THE OPPORTUNITY

3423
02:24:10,160 --> 02:24:11,240
TO RESPOND IN MEETING A Z WELL

3424
02:24:11,240 --> 02:24:13,080
AND WE WILL TRY TO POST THAT

3425
02:24:13,080 --> 02:24:15,080
SOMEWHERE. I'M GOING TO START

3426
02:24:15,080 --> 02:24:16,520
GOING THROUGH THESE. ONE

3427
02:24:16,520 --> 02:24:18,440
ATTENDEE ASKS ARE WILL RESOURCES

3428
02:24:18,440 --> 02:24:21,440
BESIDES A LAWYER, FOR TRAIN

3429
02:24:21,440 --> 02:24:24,480
TRAINEES OR RESIDENTS WITH

3430
02:24:24,480 --> 02:24:26,200
DISABILITY WHO ARGUING

3431
02:24:26,200 --> 02:24:27,560
ACCOMMODATIONS ARE UNREASONABLE

3432
02:24:27,560 --> 02:24:28,960
WITHOUT HAVING TO FURTHER ARGUE

3433
02:24:28,960 --> 02:24:35,600
OR CONFIRM THAT CONCLUSION?

3434
02:24:35,600 --> 02:24:37,400
>>IT CAN BE HELPFUL TO
REACH

3435
02:24:37,400 --> 02:24:39,920
OUT TO THE DISABILITY COMMUNITY.

3436
02:24:39,920 --> 02:24:41,800
IF YOU CAN -- I HAVE HEARD FROM

3437
02:24:41,800 --> 02:24:45,320
SOME PEOPLE THAT SHARING

3438
02:24:45,320 --> 02:24:48,080
INFORMATION ABOUT ANOTHER PERSON

3439
02:24:48,080 --> 02:24:49,560
WITH A SIMILAR DISABILITY THAT'S

3440
02:24:49,560 --> 02:24:51,400
BEEN SUCCESSFULLY ACCOMMODATED

3441
02:24:51,400 --> 02:24:53,320
CAN BE POWERFUL. I KNOW PEOPLE

3442
02:24:53,320 --> 02:24:56,200
HAVE USED MY SITUATION AS

3443
02:24:56,200 --> 02:24:57,720
ANECDOTE TO SHOW THAT SOMEBODY

3444
02:24:57,720 --> 02:24:59,600
WITH PARALYSIS CAN DO A

3445
02:24:59,600 --> 02:25:02,280
RESIDENCY IN RADIOLOGY. FOR

3446
02:25:02,280 --> 02:25:04,600
EXAMPLE. SO THE PROBLEM IS THAT

3447
02:25:04,600 --> 02:25:07,600
PEOPLE DON'T KNOW A LOT OF OTHER

3448
02:25:07,600 --> 02:25:11,600
DISABLED PE PEOPLE SOMETIMES AND

3449
02:25:11,600 --> 02:25:14,040
FEEL ALONE, THAT'S WHERE SOCIETY

3450
02:25:14,040 --> 02:25:17,960
FOR PHYSICIANS WITH DISABILITIES

3451
02:25:17,960 --> 02:25:19,680
COMES IN, DR. KIM HAS A THOUSAND

3452
02:25:19,680 --> 02:25:22,680
PEOPLE ON LIST SERVE WITH ALL

3453
02:25:22,680 --> 02:25:24,720
SORTS OF DISABILITIES WHO ARE

3454
02:25:24,720 --> 02:25:25,440
WILLING TO ANSWER QUESTIONS AND

3455
02:25:25,440 --> 02:25:28,400
PLUG FOR OUR IT IS ABILITY

3456
02:25:28,400 --> 02:25:29,720
MENTORSHIP -- DISABILITY

3457
02:25:29,720 --> 02:25:31,000
MENTORSHIP PROGRAM, PEOPLE CAN

3458
02:25:31,000 --> 02:25:36,080
SEEK OUT OTHERS WITH SIMILAR

3459
02:25:36,080 --> 02:25:41,160
DISABILITIES TO STRATEGIZE BEST

3460
02:25:41,160 --> 02:25:42,800
WAYS TO GET OUR NEEDS MET.

3461
02:25:42,800 --> 02:25:45,000
>>MOVE TO THE NEXT
QUESTION.

3462
02:25:45,000 --> 02:25:46,960
AGAIN, THIS SOMETHING THAT I

3463
02:25:46,960 --> 02:25:48,920
THINK Y'ALL TOUCHED ON BUT AN

3464
02:25:48,920 --> 02:25:50,440
INTERESTING FRAMING. CAN THE

3465
02:25:50,440 --> 02:25:52,080
SPEAKERS ADDRESS HOW THE ISSUE

3466
02:25:52,080 --> 02:25:54,200
OF DISABILITY -- ADDRESS THE

3467
02:25:54,200 --> 02:25:56,960
ISSUE OF DISABILITY TOKENISM IN

3468
02:25:56,960 --> 02:25:58,560
DEIA EFFORTS? HOW CAN WE

3469
02:25:58,560 --> 02:26:00,320
ENCOURAGE RESEARCHERS AND

3470
02:26:00,320 --> 02:26:03,400
CLINICIANS WITH INVISIBLE

3471
02:26:03,400 --> 02:26:05,680
DISABILITIES TO DISCLOSE THEIR

3472
02:26:05,680 --> 02:26:09,920
STATUS?

3473
02:26:09,920 --> 02:26:12,200
>>TO BE HONEST I'M ALMOST
GLAD

3474
02:26:12,200 --> 02:26:15,080
YOU ARE ASKING ABOUT TOKENISM

3475
02:26:15,080 --> 02:26:16,200
MOST TIME WE ARE NOT THERE YET.

3476
02:26:16,200 --> 02:26:18,440
TO BE A TOKEN PERSON THEY HAD TO

3477
02:26:18,440 --> 02:26:20,160
HAVE SOMEONE WILL TO BEGIN WITH

3478
02:26:20,160 --> 02:26:22,000
AND MOST OF THE FIGHT IS ALONG

3479
02:26:22,000 --> 02:26:24,560
LINES INCLUDING DISABILITY AT

3480
02:26:24,560 --> 02:26:26,880
ALALL. SO LETS THEM ADDRESS

3481
02:26:26,880 --> 02:26:29,160
THOUSAND GET TO THE NEXT STEP

3482
02:26:29,160 --> 02:26:31,080
PAST THAT.  BUT IN TERMS OF

3483
02:26:31,080 --> 02:26:33,600
VISIBLE DISABILITY, NOT UPDATED

3484
02:26:33,600 --> 02:26:36,680
BUT INVISIBLY DISABLED P AND IN

3485
02:26:36,680 --> 02:26:38,560
ORDER TO DISCLOSE YOU HAVE TO

3486
02:26:38,560 --> 02:26:41,760
MAKE PEOPLE FEEL SAFE DOING SO,

3487
02:26:41,760 --> 02:26:43,800
NOT AS MUCH WORRIED ABOUT WHAT

3488
02:26:43,800 --> 02:26:45,320
KINDS OF DISCRIMINATION THEY ARE

3489
02:26:45,320 --> 02:26:47,280
GOING TO FACE IF PEOPLE KNOW

3490
02:26:47,280 --> 02:26:50,200
BECAUSE THAT IS FOR MOST PEOPLE,

3491
02:26:50,200 --> 02:26:53,360
THE BIG BARRIER, THAT AS ATALKED

3492
02:26:53,360 --> 02:26:56,920
ABOUT BEFORE PEOPLE MIGHT NOT

3493
02:26:56,920 --> 02:26:58,280
FEEL THEY HAVE DISCLOSE WITHOUT

3494
02:26:58,280 --> 02:26:59,840
DOCUMENTATION.  THAT'S FIVE

3495
02:26:59,840 --> 02:27:00,960
YEARS BETWEEN WHEN I DISCLOSED

3496
02:27:00,960 --> 02:27:02,240
BECAUSE I DIDN'T HAVE PAPERWORK

3497
02:27:02,240 --> 02:27:05,400
AT THE TIME.

3498
02:27:05,400 --> 02:27:10,720
>>I WOULD SAY FOR
MULTIPLE

3499
02:27:10,720 --> 02:27:13,760
REASONS, THE IDEA OF TOKENISM IN

3500
02:27:13,760 --> 02:27:16,920
DEIA IS SOMETHING I HAD PERSONAL

3501
02:27:16,920 --> 02:27:18,400
EXPERIENCE WITH. ONE OF THE

3502
02:27:18,400 --> 02:27:20,560
THINGS I USUAL USUALLY SAY WHEN

3503
02:27:20,560 --> 02:27:22,840
I'M ON ONE OF THESE DEI

3504
02:27:22,840 --> 02:27:24,440
COMMITTEES OR WORKING ON

3505
02:27:24,440 --> 02:27:25,920
PROJECTS IS THAT I CANNOT BE

3506
02:27:25,920 --> 02:27:28,440
EVERYTHING TO EVERYBODY. THE ONE

3507
02:27:28,440 --> 02:27:29,760
PERSON REPRESENT THE ENTIRE

3508
02:27:29,760 --> 02:27:31,320
DISABILITY COMMUNITY NOR SHOULD

3509
02:27:31,320 --> 02:27:32,320
THEY. JUST THINKING ABOUT THE

3510
02:27:32,320 --> 02:27:35,040
FACT THAT THERE IS SO MUCH

3511
02:27:35,040 --> 02:27:37,880
DIVERSITY WITHIN DISABILITY, AND

3512
02:27:37,880 --> 02:27:40,080
THAT'S BECAUSE INDIVIDUAL

3513
02:27:40,080 --> 02:27:43,000
CONDITIONS THAT IS BECAUSE I'M A

3514
02:27:43,000 --> 02:27:45,000
BLACK LATINA DISABLED PERSON, I

3515
02:27:45,000 --> 02:27:46,080
MIGHT NOT HAVE THE SAME

3516
02:27:46,080 --> 02:27:47,400
EXPERIENCE AS SOMEONE NOT THOSE

3517
02:27:47,400 --> 02:27:48,960
THINGS. SO TRYING TO MAKE SURE

3518
02:27:48,960 --> 02:27:51,000
THAT IF YOU ARE TALKING ABOUT

3519
02:27:51,000 --> 02:27:52,680
DISABILITY IN DEI YOU GET AS

3520
02:27:52,680 --> 02:27:53,320
MANY REPRESENTATIONS AS

3521
02:27:53,320 --> 02:27:55,680
POSSIBLEPOSSIBLE.  IS SOMETHINGE

3522
02:27:55,680 --> 02:27:57,160
SHOULD DO. I THINK THAT ONE

3523
02:27:57,160 --> 02:27:58,800
THING WE DON'T DO AS OFTEN AS WE

3524
02:27:58,800 --> 02:28:00,240
SHOULD IN MEDICINE IS LOOK

3525
02:28:00,240 --> 02:28:03,680
OUTSIDE OF MEDICINE FOR

3526
02:28:03,680 --> 02:28:05,680
EXPERTISE. FOR DATA, FOR

3527
02:28:05,680 --> 02:28:07,280
WHATEVER OTHER KINDS OF

3528
02:28:07,280 --> 02:28:08,760
INFORMATION COULD BE HELPFUL TO

3529
02:28:08,760 --> 02:28:10,720
US. SOME OF THE THINGS I TRY TO

3530
02:28:10,720 --> 02:28:12,760
ENCOURAGE NOT JUST IN DEI

3531
02:28:12,760 --> 02:28:13,960
COMMUNITIES BUT OTHER PEOPLE I

3532
02:28:13,960 --> 02:28:15,400
MIGHT BE WORKING WITH IS TO

3533
02:28:15,400 --> 02:28:16,960
PARTNER WITH DISABLED PEOPLE IN

3534
02:28:16,960 --> 02:28:18,320
THE COMMUNITIES WITH WHICH YOU

3535
02:28:18,320 --> 02:28:21,720
ARE TRYING TO WORK. TO MAKE SURE

3536
02:28:21,720 --> 02:28:23,560
THE WORK YOU ARE DOING IS

3537
02:28:23,560 --> 02:28:25,560
APPLICABLE FOR THEM. ONE THING I

3538
02:28:25,560 --> 02:28:27,400
HAD ANOTHER STUDENT OR STUDENT

3539
02:28:27,400 --> 02:28:30,200
ASK ME, SPECIFICALLY DOING SOME

3540
02:28:30,200 --> 02:28:32,040
WORK WITH LIKE BLACK AUTISTIC

3541
02:28:32,040 --> 02:28:35,880
COMMUNITY AND THEY ARE LIKE IT'S

3542
02:28:35,880 --> 02:28:37,120
GOOD, WE HAVE REPRESENTATION FOR

3543
02:28:37,120 --> 02:28:38,720
THE DISABILITY COMMUNITY. I'M

3544
02:28:38,720 --> 02:28:40,240
NOT NEUROTYPICAL BUT I'M NOT

3545
02:28:40,240 --> 02:28:42,080
AUTISTIC. SO IF I WANT TO MAKE

3546
02:28:42,080 --> 02:28:44,400
SURE I'M HAVING THAT REPRESENTED

3547
02:28:44,400 --> 02:28:46,000
IN THE WORK I'M DOING I GOT TO

3548
02:28:46,000 --> 02:28:47,760
GET SOMEBODY WHO IDENTIFIES WITH

3549
02:28:47,760 --> 02:28:49,080
THAT COMMUNITY, MULTIPLE PEOPLE

3550
02:28:49,080 --> 02:28:52,120
TO TRY TO SEE IF I CAN GET THOSE

3551
02:28:52,120 --> 02:28:53,920
PERSPECTIVES INCLUDED FROM THE

3552
02:28:53,920 --> 02:28:55,960
OUTSIDE OF STARTING ANY SUBJECT.

3553
02:28:55,960 --> 02:28:57,400
SO I THINK THAT THAT WOULD BE

3554
02:28:57,400 --> 02:28:59,760
ONE WAY NOT JUST HAVING ONE

3555
02:28:59,760 --> 02:29:01,800
PERSON IF YOU CAN GET THERE. BUT

3556
02:29:01,800 --> 02:29:04,120
TRYING TO SEE THAT IF YOU CAN

3557
02:29:04,120 --> 02:29:05,840
GET MULTIPLE PEOPLE TO HAVE

3558
02:29:05,840 --> 02:29:08,520
MULTIPLE KINDS OF PERSPECTIVES. 

3559
02:29:08,520 --> 02:29:11,840
>>ANOTHER WAY TO AVOID
TOKENISM

3560
02:29:11,840 --> 02:29:14,920
IS TO BE AN ALLY TO OTHERS, I

3561
02:29:14,920 --> 02:29:20,120
SHOW UP IN DIVERSITY SPACES AS

3562
02:29:20,120 --> 02:29:22,320
DISABLED PERSON BUT ALSO WHITE

3563
02:29:22,320 --> 02:29:23,680
MALE THAT GIVES ME CERTAIN

3564
02:29:23,680 --> 02:29:28,160
AMOUNT OF PRIVILEGE. DOESN'T

3565
02:29:28,160 --> 02:29:31,760
ALLOW ME TO REALLY -- I KNOW

3566
02:29:31,760 --> 02:29:36,440
PERSONAL EXMEANS BEING RACIALLY

3567
02:29:36,440 --> 02:29:38,440
MINORITIZED INDIVIDUAL SO I HAVE

3568
02:29:38,440 --> 02:29:40,520
TO REALIZE THAT MY PERSPECTIVE

3569
02:29:40,520 --> 02:29:46,480
IS JUST ONE BUT THAT RECOGNIZING

3570
02:29:46,480 --> 02:29:49,560
DIVERSITY OF DISABILITY THAT I'M

3571
02:29:49,560 --> 02:29:53,360
THERE TO REPRESENT THE

3572
02:29:53,360 --> 02:29:55,720
COMMUNITY. I TRY TO LOOK TO

3573
02:29:55,720 --> 02:29:57,040
PRINCIPLES OF DISABILITY JUSTICE

3574
02:29:57,040 --> 02:30:00,840
WHICH IS A MOVEMENT STARTED BY

3575
02:30:00,840 --> 02:30:02,600
PEOPLE OF COLOR AND SEXUAL AND

3576
02:30:02,600 --> 02:30:10,840
GENDER MINORITIES TO ADVANCE THE

3577
02:30:10,840 --> 02:30:14,400
INCLUSION, THE TREATMENT P

3578
02:30:14,400 --> 02:30:16,400
BASICALLY TO IMPROVE THE

3579
02:30:16,400 --> 02:30:19,040
SITUATION FOR DISABLED PEOPLE.

3580
02:30:19,040 --> 02:30:23,240
SO I DON'T HAVE THAT EXPERIENCE

3581
02:30:23,240 --> 02:30:24,560
BUT THEY HAVE IMPORTANT TENANTS

3582
02:30:24,560 --> 02:30:27,080
AS PART OF THEIR MOVEMENT THAT I

3583
02:30:27,080 --> 02:30:30,560
TRIED TO IMPLEMENT. ONE OF THOSE

3584
02:30:30,560 --> 02:30:33,160
IS CROSS MOVEMENT ORGANIZING.

3585
02:30:33,160 --> 02:30:35,280
THUS BECOMING AN ALLY OR BEING

3586
02:30:35,280 --> 02:30:38,720
AN ALLY COME IN TO REALIZE THAT

3587
02:30:38,720 --> 02:30:39,960
IT IS IMPORTANT WE ALL SUPPORT

3588
02:30:39,960 --> 02:30:44,000
EACH OTHER THAT ANTI-RACIST

3589
02:30:44,000 --> 02:30:47,320
EFFORTS ALSO ARE ANTI---

3590
02:30:47,320 --> 02:30:49,440
ANTI-ABLEIST AND VICE VERSA. THE

3591
02:30:49,440 --> 02:30:50,480
LEADERSHIP ARE THE MOST IMPACTED

3592
02:30:50,480 --> 02:30:52,520
SO LISTENING TO STUDENTS AND

3593
02:30:52,520 --> 02:30:54,680
RESIDENTS AND STAFF AND THOSE IN

3594
02:30:54,680 --> 02:31:00,400
LESS PRIVILEGED POSITIONS, AND

3595
02:31:00,400 --> 02:31:02,520
FOLLOWING THEIR LEAD SO TO

3596
02:31:02,520 --> 02:31:04,640
SPEAK. I THINK YOU HAVE THE

3597
02:31:04,640 --> 02:31:07,880
PROGRESS BENEFITS ALL OF US. 

3598
02:31:07,880 --> 02:31:11,280
>>AWESOME. I DO WANT TO

3599
02:31:11,280 --> 02:31:13,000
ACKNOWLEDGE FOR OUR VIEWERS WE

3600
02:31:13,000 --> 02:31:16,000
ARE AT PUBLISHED BREAK TIME. BUT

3601
02:31:16,000 --> 02:31:17,840
THERE ARE ALL THESE QUESTIONS SO

3602
02:31:17,840 --> 02:31:19,240
WE TOTALLY UNDERSTAND IF PEOPLE

3603
02:31:19,240 --> 02:31:20,720
NEED TO STEP AWAY BECAUSE THEY

3604
02:31:20,720 --> 02:31:21,880
HAVE OTHER COMMITMENTS BECAUSE

3605
02:31:21,880 --> 02:31:23,680
IF FOR THOSE WHO HAVE THE

3606
02:31:23,680 --> 02:31:25,240
FLEXIBILITY TO STAY, I WOULD

3607
02:31:25,240 --> 02:31:26,880
LIKE TO POLL TWO MORE QUESTIONS

3608
02:31:26,880 --> 02:31:30,520
FROM OUR PANELISTS. ONE IS A

3609
02:31:30,520 --> 02:31:32,000
RELATIVELY LONG WINDED, I WOULD

3610
02:31:32,000 --> 02:31:35,160
LIKE TO READ VERBATIM. WE KNOW

3611
02:31:35,160 --> 02:31:36,720
FROM PROFESSOR ELIZABETH

3612
02:31:36,720 --> 02:31:37,880
MORGAN'S TALK THAT OFTEN

3613
02:31:37,880 --> 02:31:40,360
INCREASE KNOWLEDGE AND EDUCATION

3614
02:31:40,360 --> 02:31:42,080
REDUCE EXPLICIT BIAS BUT

3615
02:31:42,080 --> 02:31:45,200
INCREASE IMPLICIT BIAS.  SHE

3616
02:31:45,200 --> 02:31:47,600
EXPLAINED THIS SUGGESTS DOCTORS

3617
02:31:47,600 --> 02:31:50,400
EDUCATION CONTRIBUTES TO

3618
02:31:50,400 --> 02:31:51,560
ABLEISMs MEANS BY PATIENTS IN

3619
02:31:51,560 --> 02:31:53,520
HEALTHCARE SETTINGS INTRODUCING

3620
02:31:53,520 --> 02:31:54,600
ANOTHER BARRIER. CAN YOU COMMENT

3621
02:31:54,600 --> 02:31:56,840
HOW PRACTICERS WITH DISABILITY

3622
02:31:56,840 --> 02:31:59,720
REDUCE HARMFUL UNINTENDED

3623
02:31:59,720 --> 02:32:01,720
CONSEQUENCE OF INCREASE IMPLICIT

3624
02:32:01,720 --> 02:32:03,920
BIAS, DUE TO INCREASED

3625
02:32:03,920 --> 02:32:07,480
EDUCATION? HAVE YOU SEEN CHANGES

3626
02:32:07,480 --> 02:32:10,400
IN YOUR ABLED COLLEAGUES?

3627
02:32:10,400 --> 02:32:13,680
>>I CAN START THIS
QUESTION AND

3628
02:32:13,680 --> 02:32:16,560
CREDIT TO DR. BETHANY,

3629
02:32:16,560 --> 02:32:18,400
DEVELOPMENTAL PEDIATRICIAN.  WHO

3630
02:32:18,400 --> 02:32:19,880
POINTED OUT THAT IN MEDICAL

3631
02:32:19,880 --> 02:32:21,400
TRAINING, WE SPEND THE VAST

3632
02:32:21,400 --> 02:32:22,680
MAJORITY OF TIME ON THE

3633
02:32:22,680 --> 02:32:24,360
INPATIENT FLOORS IN THE

3634
02:32:24,360 --> 02:32:25,960
HOSPITALS. SO SHE COMES FROM

3635
02:32:25,960 --> 02:32:27,200
PEDIATRIC BACK GROWN, AS AN

3636
02:32:27,200 --> 02:32:30,360
EXAMPLE TALKED HOW WHEN SHE

3637
02:32:30,360 --> 02:32:31,440
LEARNED AND COLLEAGUE LEARN

3638
02:32:31,440 --> 02:32:34,680
ABOUT KIDS WITH TYPE 1 DIABETES,

3639
02:32:34,680 --> 02:32:36,400
THAT THE KIDS THEY SEE IN THE

3640
02:32:36,400 --> 02:32:37,720
HOSPITAL ARE GOING TO BE AN

3641
02:32:37,720 --> 02:32:39,600
OVERREPRESENTATION OF THE KIDS

3642
02:32:39,600 --> 02:32:42,480
WHO HAVE A MORE SIMILAR FORM OF

3643
02:32:42,480 --> 02:32:43,720
DISEASE OR HARDER TIME MANAGING

3644
02:32:43,720 --> 02:32:44,960
IT AND THAT IS BECAUSE THOSE ARE

3645
02:32:44,960 --> 02:32:45,600
THE ONES.

3646
02:32:45,600 --> 02:32:47,280
COOING BACK TO THE HOSPITAL. IF

3647
02:32:47,280 --> 02:32:50,200
OF A KID WHO GETS HOSPITALSED

3648
02:32:50,200 --> 02:32:52,520
DISABILITY DISEASE ONSET AN GOES

3649
02:32:52,520 --> 02:32:54,680
HOME AND MANAGES GREAT AND NO

3650
02:32:54,680 --> 02:32:56,080
PROBLEMS THEY DON'T PRESENT TO

3651
02:32:56,080 --> 02:32:58,200
HEALTHCARE. SO WHAT THAT MEANS

3652
02:32:58,200 --> 02:32:59,720
IS THAT AS PHYSICIANS AS WE GO

3653
02:32:59,720 --> 02:33:01,360
THROUGH TRAINING, WE ARE

3654
02:33:01,360 --> 02:33:03,960
PRESENTED WITH

3655
02:33:03,960 --> 02:33:06,440
INCREASINGBLYINGLY SKEWED

3656
02:33:06,440 --> 02:33:07,960
PERSPECTIVE OF WHAT LIFE WITH

3657
02:33:07,960 --> 02:33:08,880
DISABILITY LOOKS LIKE BECAUSE

3658
02:33:08,880 --> 02:33:11,120
WHICH ONLY SEE PEOPLE WILL THE

3659
02:33:11,120 --> 02:33:12,560
MOST SEVERE POINTS OF THEIR LIVE

3660
02:33:12,560 --> 02:33:14,000
AND WE SEE THEM AT THE WORST

3661
02:33:14,000 --> 02:33:16,040
POINT OFTEN IN THAT EPISODE OF

3662
02:33:16,040 --> 02:33:17,960
WHATEVER IT IS.  AND SO THE WAY

3663
02:33:17,960 --> 02:33:19,880
OUR TRAINING IS PUT TOGETHER, IT

3664
02:33:19,880 --> 02:33:23,200
IS REALLY IN A WAY SET UP TO

3665
02:33:23,200 --> 02:33:27,200
GIVE OUR COLLEAGUES HERE A

3666
02:33:27,200 --> 02:33:28,360
REALLY UNDER-REPRESENTED SAMPLE

3667
02:33:28,360 --> 02:33:29,800
OF WHAT IT MEANS TO LIVE WITH

3668
02:33:29,800 --> 02:33:31,360
ANY CONDITION. THERE'S STUDIES

3669
02:33:31,360 --> 02:33:33,840
THAT HAVE SHOWN DIFFERENCES IN

3670
02:33:33,840 --> 02:33:37,080
SOME OF THE ASPECT OF BIAS

3671
02:33:37,080 --> 02:33:39,040
AROUND DISABILITY RELATED TO

3672
02:33:39,040 --> 02:33:40,320
WHAT SPECIALTY PEOPLE WERE IN

3673
02:33:40,320 --> 02:33:41,960
FOR THE PARTICULAR SCENARIO THEY

3674
02:33:41,960 --> 02:33:44,200
WERE TALKING ABOUT, WHAT POINT

3675
02:33:44,200 --> 02:33:45,200
ALONG CARE PATHWAY SEEING

3676
02:33:45,200 --> 02:33:46,440
PATIENTS WHETHER THAT IS IN

3677
02:33:46,440 --> 02:33:51,400
THERE LIKE INTENSIVE CARE UNIT

3678
02:33:51,400 --> 02:33:52,760
WORST POINT VERSUS SOMEBODY SEES

3679
02:33:52,760 --> 02:33:54,080
THESE KIDS OUTPATIENT FOR YEARS

3680
02:33:54,080 --> 02:33:55,360
AND HEAR ABOUT THEM GOING ABOUT

3681
02:33:55,360 --> 02:33:56,760
EVERY DAY LIVES. SO I THINK

3682
02:33:56,760 --> 02:33:58,440
THAT'S ONE OF THE REASONS WHY AT

3683
02:33:58,440 --> 02:34:00,280
LEAST IN THIS SPECIFIC SETTING,

3684
02:34:00,280 --> 02:34:01,520
INCREASED EDUCATION LEADS TO

3685
02:34:01,520 --> 02:34:03,240
INCREASE IMPLICIT BIAS.  BECAUSE

3686
02:34:03,240 --> 02:34:04,720
OF SPECIFICALLY WHAT THAT

3687
02:34:04,720 --> 02:34:09,080
EDUCATION ENTAILS.  AS DISABLED

3688
02:34:09,080 --> 02:34:10,440
PERSON IN MEDICINE ONE THING WE

3689
02:34:10,440 --> 02:34:12,760
CAN DO BY BEING THERE AND EVEN

3690
02:34:12,760 --> 02:34:15,880
BEING BLANKET DISCLOSING LIKE I

3691
02:34:15,880 --> 02:34:17,480
DO WITHOUT SPECIFICS IS IT MAKES

3692
02:34:17,480 --> 02:34:20,720
THE POINT TO MY COLLEAGUES THAT

3693
02:34:20,720 --> 02:34:23,120
THERE IS -- I LIKE TO PUT IT

3694
02:34:23,120 --> 02:34:24,760
PATIENTS DON'T HAVE MONOPOLY ON

3695
02:34:24,760 --> 02:34:26,760
DISABILITY. THERE IS MORE

3696
02:34:26,760 --> 02:34:27,760
OVERLAP BETWEEN DISABLE

3697
02:34:27,760 --> 02:34:29,560
POPULATION AN COLLEAGUES, IT

3698
02:34:29,560 --> 02:34:33,200
GIVES AN EXAMPLE OF PEOPLE

3699
02:34:33,200 --> 02:34:35,040
DISABLED PEOPLE CAN SUCCEED AND

3700
02:34:35,040 --> 02:34:37,160
HAVE CAREERS, CAN BE THEIR

3701
02:34:37,160 --> 02:34:38,280
COLLEAGUES. THAT SAN IMPORTANT

3702
02:34:38,280 --> 02:34:44,720
PIECE OF WHAT WE CAN DO.

3703
02:34:44,720 --> 02:34:48,080
>>THAT WAS ABSOLUTELY
FANTASTIC

3704
02:34:48,080 --> 02:34:51,680
ANSWER. I COMPLETELY AGREED. I

3705
02:34:51,680 --> 02:34:54,240
THIS I THAT PARTICULARLY WITHIN

3706
02:34:54,240 --> 02:34:56,360
NEUROLOGY PEDIATRIC NEUROLOGY,

3707
02:34:56,360 --> 02:34:58,200
WE ARE NOT SEEING PEOPLE LIKE

3708
02:34:58,200 --> 02:35:02,400
YEARS DOWN THE LINE. SO I'M

3709
02:35:02,400 --> 02:35:05,280
THINKING MY OWN USING MYSELF AS

3710
02:35:05,280 --> 02:35:06,600
AN EXAMPLE, YOU MIGHT SEE THAT

3711
02:35:06,600 --> 02:35:09,240
PERSON AT THE MOMENT THEY HAD A

3712
02:35:09,240 --> 02:35:10,600
VEHICLE, WE ARE FIRST RESPONDERS

3713
02:35:10,600 --> 02:35:12,960
TO STROKE IN THE HOSPITAL. WE

3714
02:35:12,960 --> 02:35:14,200
MIGHT SEE THEM OFTEN TO THE

3715
02:35:14,200 --> 02:35:16,320
POINT THEY DISCHARGE TO

3716
02:35:16,320 --> 02:35:18,920
REHABILITATION FACILITY OR HOME

3717
02:35:18,920 --> 02:35:20,680
OR WHEREVER. AND IF WE ARE NOT

3718
02:35:20,680 --> 02:35:22,760
WORKING IN STROKE WE DON'T

3719
02:35:22,760 --> 02:35:24,120
NECESSARILY SEE THEM FIVE, TEN,

3720
02:35:24,120 --> 02:35:27,560
15 YEARS LATER. BY BEING MORE

3721
02:35:27,560 --> 02:35:28,760
OPEN ABOUT WHAT MY OWN

3722
02:35:28,760 --> 02:35:30,200
EXPERIENCES ARE I CAN TALK ABOUT

3723
02:35:30,200 --> 02:35:32,800
THE FACT THAT I'M AN EXAMPLE OF

3724
02:35:32,800 --> 02:35:34,400
WHAT CAN HAPPEN, WHAT LIFE CAN

3725
02:35:34,400 --> 02:35:37,000
BE LIKE FIVE, TEN, 15 YEARS

3726
02:35:37,000 --> 02:35:38,480
LATER. AND I TEND TO

3727
02:35:38,480 --> 02:35:41,200
PARTICULARLY WITH MY TRAINEES,

3728
02:35:41,200 --> 02:35:43,640
LESS SO THAN WITH COLLEAGUES

3729
02:35:43,640 --> 02:35:45,920
THOUGH SURE LET THEM NOTICE

3730
02:35:45,920 --> 02:35:48,440
POINT, BE AN EXAMPLE FOR YES,

3731
02:35:48,440 --> 02:35:50,360
OKAY, I'M HERE, I'M WORKING I

3732
02:35:50,360 --> 02:35:52,200
SEEM LIKE I'M DOING PRETTY WELL,

3733
02:35:52,200 --> 02:35:54,320
I LIKE TO THINK THAT I HAVE A

3734
02:35:54,320 --> 02:35:59,840
DECENT LIFE, BUT STILL DEALING

3735
02:35:59,840 --> 02:36:01,800
WITH AFFECT OF STROKE, CANCER,

3736
02:36:01,800 --> 02:36:03,040
PHYSICAL THERAPY, OAR ISSUES SO

3737
02:36:03,040 --> 02:36:04,960
IT IS NOT -- OTHER ISSUES COMING

3738
02:36:04,960 --> 02:36:06,440
UP SO NOT JUST THIS ONE THING

3739
02:36:06,440 --> 02:36:11,080
HAPPENED. THAT'S ALL. YES. I AM

3740
02:36:11,080 --> 02:36:13,200
LIVING LIFE AFTER ILLNESS, BUT

3741
02:36:13,200 --> 02:36:14,760
STILL LIVING WITH EFFECTS OF IT

3742
02:36:14,760 --> 02:36:16,240
BUT ALSO JUST BECAUSE I'M LIVING

3743
02:36:16,240 --> 02:36:20,120
WITH THE AFFECT OF IT DOES NOT

3744
02:36:20,120 --> 02:36:21,880
MEAN I CANNOT LIVE A HAPPY

3745
02:36:21,880 --> 02:36:23,280
SUCCESSFUL PRODUCTIVE LIFE. I

3746
02:36:23,280 --> 02:36:25,520
HAVE DEFINITELY NOTICED CHANGES

3747
02:36:25,520 --> 02:36:27,800
IN MY COLLEAGUES, AND IN MY

3748
02:36:27,800 --> 02:36:30,280
TRAINEES I WAS JUST HAVING A

3749
02:36:30,280 --> 02:36:32,000
CONVERSATION WITH THEM NOT TOO

3750
02:36:32,000 --> 02:36:34,720
LONG AGO. I HAD GIVEN TALK TO

3751
02:36:34,720 --> 02:36:36,800
OUR DEPARTMENT ABOUT INCLUSIVE

3752
02:36:36,800 --> 02:36:38,880
COMMUNICATION FOR PEOPLE WITH

3753
02:36:38,880 --> 02:36:41,480
DISABILITY AND TALKING ABOUT

3754
02:36:41,480 --> 02:36:43,840
ABLEIST LANGUAGE THINGS WE HAVE

3755
02:36:43,840 --> 02:36:45,200
TRADITIONALLY SAID WITHIN

3756
02:36:45,200 --> 02:36:47,360
NEUROLOGY WAYS WE -- THINGS WE

3757
02:36:47,360 --> 02:36:49,440
SHOULD NOT SAY WITH NEUROLOGY. I

3758
02:36:49,440 --> 02:36:51,120
WAS NOT EAVESDROPPING BUT

3759
02:36:51,120 --> 02:36:53,640
HAPPENED TO BE IN THE ROOM

3760
02:36:53,640 --> 02:36:55,600
LISTENING TO COLLEAGUES ONE OF

3761
02:36:55,600 --> 02:36:57,000
MY RESIDENTS WAS PRESENTING TO

3762
02:36:57,000 --> 02:36:58,320
ONE OF MY COLLEAGUES AND THEY

3763
02:36:58,320 --> 02:37:01,160
STARTED USING TERMS LIKE

3764
02:37:01,160 --> 02:37:02,800
NON-SPEAKING, THEY WERE USING

3765
02:37:02,800 --> 02:37:04,160
WHEELCHAIR USER I WAS LIKE YOU

3766
02:37:04,160 --> 02:37:05,960
DIDN'T SAY THAT, I REMEMBER US

3767
02:37:05,960 --> 02:37:07,720
HAVING CONVERSATIONS WHERE I

3768
02:37:07,720 --> 02:37:08,680
SPECIFICALLY HEARD SOME OF THE

3769
02:37:08,680 --> 02:37:10,520
LANGUAGES THAT YOU USED. SO EVEN

3770
02:37:10,520 --> 02:37:11,560
THOUGH NOT SPECIFICALLY SAYING

3771
02:37:11,560 --> 02:37:15,480
HEY, LOOK AT ME, I'M USING THIS

3772
02:37:15,480 --> 02:37:17,160
ABLEIST LANGUAGE, THE FACT THEY

3773
02:37:17,160 --> 02:37:19,040
ARE USING IT I GUESS WHEN THEY

3774
02:37:19,040 --> 02:37:21,000
DON'T EVEN KNOW THAT I HAVE I'M

3775
02:37:21,000 --> 02:37:22,440
IN THE ROOM IS NICE TO SEE

3776
02:37:22,440 --> 02:37:23,800
BECAUSE THAT MEANS THAT MAYBE

3777
02:37:23,800 --> 02:37:26,760
SOMETHING THAT I HAVE

3778
02:37:26,760 --> 02:37:27,680
(INAUDIBLE) TEACH THEM IS

3779
02:37:27,680 --> 02:37:32,800
GETTING INTO THE DAILY PRACTICE 

3780
02:37:32,800 --> 02:37:35,320
>>THIS IS SUCH A GOOD
QUESTION.

3781
02:37:35,320 --> 02:37:37,000
THE IDEA OF UNINTENDED

3782
02:37:37,000 --> 02:37:38,640
CONSEQUENCES IS SOMETHING I

3783
02:37:38,640 --> 02:37:41,440
THINK ABOUT A LOT. I WORRY WHEN

3784
02:37:41,440 --> 02:37:43,040
I'M GIVING MY TALKS AND SHARING

3785
02:37:43,040 --> 02:37:45,760
MY PERSONAL STORY. I HAVE TO ASK

3786
02:37:45,760 --> 02:37:48,960
MYSELF IS THIS INSPIRATION PORN

3787
02:37:48,960 --> 02:37:52,240
OR TRAUMA PORN, WHY AM I SHARING

3788
02:37:52,240 --> 02:37:54,680
THIS? WHAT IS MY GOAL IN SHARING

3789
02:37:54,680 --> 02:37:56,400
THIS INFORMATION? AND TRYING TO

3790
02:37:56,400 --> 02:37:59,960
DO IT IN WAY THAT DOESN'T

3791
02:37:59,960 --> 02:38:01,600
PROMOTE HARMFUL NARRATIVES LIKE

3792
02:38:01,600 --> 02:38:04,360
I WAS SAYING THE IDEA OF

3793
02:38:04,360 --> 02:38:06,080
OVERCOMING AND THAT IT IS LOOK

3794
02:38:06,080 --> 02:38:09,040
AT ME, I GOT PARALYZED NOW I CAN

3795
02:38:09,040 --> 02:38:13,000
WALK AGAIN AND I AM AN ATTENDING

3796
02:38:13,000 --> 02:38:13,920
PHYSICIAN. I DON'T WANT PEOPLE

3797
02:38:13,920 --> 02:38:16,360
TO GET THE IDEA THAT THAT IS

3798
02:38:16,360 --> 02:38:20,160
LIKE EASY OR THAT BECAUSE ONE

3799
02:38:20,160 --> 02:38:21,040
DISABLED PERSON CAN ACCOMPLISH

3800
02:38:21,040 --> 02:38:22,360
SOMETHING THAT ALL DISABLED

3801
02:38:22,360 --> 02:38:24,760
PEOPLE SHOULD BE ABLE TO

3802
02:38:24,760 --> 02:38:28,760
ACCOMPLISH THEM. I TRIED

3803
02:38:28,760 --> 02:38:32,000
DISCLOSE ALL WAYS WHICH

3804
02:38:32,000 --> 02:38:33,680
CIRCUMSTANCES OF MY LIFE AN

3805
02:38:33,680 --> 02:38:37,240
PRIVILEGE THAT I HAVE ALLOW ME

3806
02:38:37,240 --> 02:38:39,880
TO OCCUPY THIS POSITION AND HOW

3807
02:38:39,880 --> 02:38:44,760
A LOT OF PEOPLE WITH

3808
02:38:44,760 --> 02:38:45,760
DISABILITIES BECAUSE OF THE WAY

3809
02:38:45,760 --> 02:38:47,320
OR SOCIETY IS SET UP ARE MORE

3810
02:38:47,320 --> 02:38:51,040
LIKELY TO LIVE IN POVERTY, MORE

3811
02:38:51,040 --> 02:38:53,960
LIKELY TO LACK SOCIAL SUPPORTS,

3812
02:38:53,960 --> 02:38:59,000
TO HAVE OR HEALTH NOT EVERYBODY

3813
02:38:59,000 --> 02:39:00,280
HAS OPPORTUNITY TO BE SET UP TO

3814
02:39:00,280 --> 02:39:02,800
LIVE UP TO THEIR POTENTIAL AND

3815
02:39:02,800 --> 02:39:06,840
TO SUCCUSSE SUCCEED. THIS CAME P

3816
02:39:06,840 --> 02:39:09,040
RECENTLY I IN OUR PATIENT FAMILY

3817
02:39:09,040 --> 02:39:09,880
ADVISORY COUNCIL WHEN WE WERE

3818
02:39:09,880 --> 02:39:11,440
TALKING ABOUT WAYS TO MAKE AN

3819
02:39:11,440 --> 02:39:13,280
IMPACT THIS YEAR AND SOMEBODY

3820
02:39:13,280 --> 02:39:16,360
SUGGESTED THIS DAY IN THE LIFE

3821
02:39:16,360 --> 02:39:17,640
KIND OF THING WHERE YOU CAN PUT

3822
02:39:17,640 --> 02:39:19,360
SOMEBODY IN A BLINDFOLD FOR A

3823
02:39:19,360 --> 02:39:20,920
DAY AND SIMULATE APPEARANCE OF

3824
02:39:20,920 --> 02:39:21,960
BEING BLIND OR PUSH THEM AROUND

3825
02:39:21,960 --> 02:39:24,840
IN A WHEELCHAIR AND I STARTED

3826
02:39:24,840 --> 02:39:26,360
READING ABOUT THIS AND READING

3827
02:39:26,360 --> 02:39:28,480
ABOUT THE UNINTENDED

3828
02:39:28,480 --> 02:39:31,680
CONSEQUENCES OF ACTUALLY

3829
02:39:31,680 --> 02:39:36,480
DECREASING PEOPLE'S EMPATHY AS

3830
02:39:36,480 --> 02:39:37,440
RELATES TO DISABILITY, BECAUSE

3831
02:39:37,440 --> 02:39:38,640
QUOTE UNQUOTE IT IS NOT SO BAD

3832
02:39:38,640 --> 02:39:40,440
TO BE PUSHED AROUND IN A

3833
02:39:40,440 --> 02:39:43,120
WHEELCHAIR ALL DAY OR LIKE NO

3834
02:39:43,120 --> 02:39:46,160
BIG DEAL TO BE BLINDFOLDED AND

3835
02:39:46,160 --> 02:39:49,000
SORT OF DOESN'T REALLY PROVIDE

3836
02:39:49,000 --> 02:39:50,160
LIKE REALISTIC EXPERIENCE OF

3837
02:39:50,160 --> 02:39:52,840
WHAT PEOPLE EXPERIENCE ON A

3838
02:39:52,840 --> 02:39:56,520
DAY-TO-DAY BASIS. AND OVER TIME.

3839
02:39:56,520 --> 02:39:59,360
SO I THINK WE JUST HAVE TO BE

3840
02:39:59,360 --> 02:40:02,960
REALLY THOUGHTFUL ABOUT WAYS WE

3841
02:40:02,960 --> 02:40:05,040
ENGAGE AND ALWAYS BE ASSESSING

3842
02:40:05,040 --> 02:40:10,280
FOR UNINTENDED CONSEQUENCES. 

3843
02:40:10,280 --> 02:40:12,200
>>THANK YOU ALL. I'M
GOING TO

3844
02:40:12,200 --> 02:40:13,720
ASK ONE LAST QUESTION AND ENON A

3845
02:40:13,720 --> 02:40:15,320
HIGH NOTE A LITTLE BIT. AGAIN,

3846
02:40:15,320 --> 02:40:16,800
TO THE AUDIENCE I UNDERSTAND IF

3847
02:40:16,800 --> 02:40:18,320
YOU HAVE TO LEAVE. WE WILL HAVE

3848
02:40:18,320 --> 02:40:19,400
A BREAK UNTIL 2 O'CLOCK AFTER

3849
02:40:19,400 --> 02:40:23,560
THIS. SO THERE IS A QUESTION IN

3850
02:40:23,560 --> 02:40:26,320
THE CHAT SAYING PER ANY SPEAKERS

3851
02:40:26,320 --> 02:40:27,240
IS THERE A SPECIFIC TIME WHEN

3852
02:40:27,240 --> 02:40:28,840
YOU ARE EXPERIENCES HAVE HELPED

3853
02:40:28,840 --> 02:40:30,960
IN THE DIAGNOSIS OR TREATMENT OF

3854
02:40:30,960 --> 02:40:32,840
A PATIENT OR WHERE YOU WERE ABLE

3855
02:40:32,840 --> 02:40:34,600
TO PULL OUT AN INSIGHT OTHER

3856
02:40:34,600 --> 02:40:45,160
CLINICAL COLLEAGUES MISSED? THE

3857
02:40:47,840 --> 02:40:52,520
DONE REALLY SEE -- YET YET.  HAD

3858
02:40:52,520 --> 02:40:53,640
THAT TO THE TWO OF YOU.

3859
02:40:53,640 --> 02:40:56,160
>>I HAVE HAD A COUPLE OF

3860
02:40:56,160 --> 02:40:57,280
EXPERIENCES WHICH HAVE BEEN

3861
02:40:57,280 --> 02:40:58,560
GREAT, SOME OF THEM GREAT, SOME

3862
02:40:58,560 --> 02:41:00,600
OF THEM NOT THE GREATEST.  I

3863
02:41:00,600 --> 02:41:02,120
THINK ONE OF THE FIRST ONES THAT

3864
02:41:02,120 --> 02:41:05,760
I HAD WAS WHEN I WAS STILL IN

3865
02:41:05,760 --> 02:41:08,000
TRAINING AND AT THAT TIME I WAS

3866
02:41:08,000 --> 02:41:09,760
TRYING TO -- I WAS -- I GUESS

3867
02:41:09,760 --> 02:41:11,360
YOU WOULD SAY DEVELOPMENT WITH

3868
02:41:11,360 --> 02:41:12,720
MY OWN DISABILITY IDENTITY AND

3869
02:41:12,720 --> 02:41:15,280
TRYING TO FIGURE OUT HOW TO WORK

3870
02:41:15,280 --> 02:41:21,120
EVERYTHING OUT FOR MYSELF. SAW

3871
02:41:21,120 --> 02:41:23,640
THIS PATIENT WHO WAS YOUNG BLACK

3872
02:41:23,640 --> 02:41:27,560
WOMAN COMING IN I SAW HER IN THE

3873
02:41:27,560 --> 02:41:29,520
EMERGENCY ROOM SHE WAS COMING

3874
02:41:29,520 --> 02:41:33,720
WITH THESE VERY VAGUE

3875
02:41:33,720 --> 02:41:35,880
NEUROLOGICAL COMPLAINTS, SHE HAD

3876
02:41:35,880 --> 02:41:37,760
BEEN TO A COUPLE OF HOSPITALS

3877
02:41:37,760 --> 02:41:41,200
AND - OVER SPAN OF A FEW MONTHS,

3878
02:41:41,200 --> 02:41:43,240
SHE TALKED TO PRIMARY CARE AND

3879
02:41:43,240 --> 02:41:44,120
FEW OTHER PHYSICIANS OVER THE

3880
02:41:44,120 --> 02:41:47,280
SPAN OF NEXT FEW MONTHS. WAS

3881
02:41:47,280 --> 02:41:48,600
ALWAYS TOLD IT IS NOTHING, YOU

3882
02:41:48,600 --> 02:41:51,760
ARE ANXIOUS, IT IS FINE, GO

3883
02:41:51,760 --> 02:41:53,400
HOME. NOW SHE WAS COMING TO OUR

3884
02:41:53,400 --> 02:41:54,800
EMERGENCY ROOM AND I HAD TO BE

3885
02:41:54,800 --> 02:41:56,640
THE PERSON WHO WAS DOING THE

3886
02:41:56,640 --> 02:41:59,480
CONSULT FOR HER. I REMEMBER

3887
02:41:59,480 --> 02:42:00,720
DOING HER PHYSICAL EXAM AND

3888
02:42:00,720 --> 02:42:01,920
THINKING THERE IS SOMETHING THAT

3889
02:42:01,920 --> 02:42:04,080
IS HERE, I JUST CAN'T FIGURE

3890
02:42:04,080 --> 02:42:09,960
WHAT IT WAS.  ALSO REMEMBER SHE

3891
02:42:09,960 --> 02:42:13,320
HAD SOME SIGNS WHERE ONE OF THE

3892
02:42:13,320 --> 02:42:15,360
THINGS THEY TEACH YOU ABOUT

3893
02:42:15,360 --> 02:42:17,880
WHICH I HAVE VERY COMPLICATED

3894
02:42:17,880 --> 02:42:18,920
FEELINGS ABOUT WITHIN NEUROLOGY

3895
02:42:18,920 --> 02:42:21,720
IS THE IDEA OF PATIENTS WILL

3896
02:42:21,720 --> 02:42:23,040
SOMETIMES EMBELLISH SYMPTOMS. 

3897
02:42:23,040 --> 02:42:25,360
PUT ON A LITTLE BIT, TO SHOW

3898
02:42:25,360 --> 02:42:26,040
WHATEVER IT IS THEY ARE TRYING

3899
02:42:26,040 --> 02:42:27,720
TO SHOW. I HAD ACTUALLY HAD A

3900
02:42:27,720 --> 02:42:28,880
COLLEAGUE TALK TO ME ABOUT THAT

3901
02:42:28,880 --> 02:42:30,800
A FEW WEEKS BEFORE SO BASICALLY

3902
02:42:30,800 --> 02:42:32,600
WARN ME AGAINST BELIEVING

3903
02:42:32,600 --> 02:42:35,560
PATIENTS SOMETIMES. SO WITH THIS

3904
02:42:35,560 --> 02:42:39,040
INDIVIDUAL SEEN IN THE ER, I

3905
02:42:39,040 --> 02:42:41,760
NOTICED THAT OKAY MAYBE SHE HAD

3906
02:42:41,760 --> 02:42:44,360
A LITTLE BIT OF LIMP BUT DID

3907
02:42:44,360 --> 02:42:46,720
SEEM LIKE MORE WHEN I WAS

3908
02:42:46,720 --> 02:42:48,360
LOOKING AT IT OPPOSED TO WHEN

3909
02:42:48,360 --> 02:42:50,120
SHE WAS WALKING AROUND IN THE

3910
02:42:50,120 --> 02:42:51,520
ROOM ON HER OWN. STILL SOMETHING

3911
02:42:51,520 --> 02:42:54,360
I COULD NOT GET OUT OF MY HEAD.

3912
02:42:54,360 --> 02:42:57,000
SO MY UPPER LEVEL WANTED TO SEND

3913
02:42:57,000 --> 02:42:59,640
HER HOME, OUR SERVICE WAS PRETTY

3914
02:42:59,640 --> 02:43:01,240
FULL BUT I THOUGHT THERE WAS

3915
02:43:01,240 --> 02:43:02,680
SOMETHING ELSE GOING ON AND WE

3916
02:43:02,680 --> 02:43:05,960
NEEDED TO SEE WHAT IT WAS. I

3917
02:43:05,960 --> 02:43:08,680
THINK OUT OF THE FACT THAT MY

3918
02:43:08,680 --> 02:43:10,240
UPPER LEVEL RESIDENT RESPECTED

3919
02:43:10,240 --> 02:43:11,640
MY OPINION HE WAS LIKE FINE

3920
02:43:11,640 --> 02:43:13,680
BRING HER IN FOR OBSERVATION AND

3921
02:43:13,680 --> 02:43:15,560
SEE WHAT IS GOING ON. WE DID A

3922
02:43:15,560 --> 02:43:17,920
WORK UP AND DOING SOME IMAGING

3923
02:43:17,920 --> 02:43:21,960
AND FOUND OUT SHE HAD A

3924
02:43:21,960 --> 02:43:23,800
NEUROLOGICAL DISEASE WHICH WE

3925
02:43:23,800 --> 02:43:25,000
COULD HELP AND WE CAN TREAT HER

3926
02:43:25,000 --> 02:43:28,120
FOR. ON THE ONE HAND THAT WAS

3927
02:43:28,120 --> 02:43:30,000
INCREDIBLY DISTRESSING BECAUSE I

3928
02:43:30,000 --> 02:43:31,840
KEPT THINKING HOW LONG IS THIS

3929
02:43:31,840 --> 02:43:33,440
WOMAN WALKING AROUND TRYING TO

3930
02:43:33,440 --> 02:43:34,760
GET SOMEONE TO TAKE THIS

3931
02:43:34,760 --> 02:43:36,400
SERIOUSLY AND THEY HAVEN'T. THE

3932
02:43:36,400 --> 02:43:41,880
OTHER HAND, I THINK I'M JUST A

3933
02:43:41,880 --> 02:43:44,160
REGULAR RESIDENT, IT MIGHT NOT

3934
02:43:44,160 --> 02:43:47,120
HAVE BEEN ME THERE AT THAT NIGHT

3935
02:43:47,120 --> 02:43:48,840
AND WOULD SHE STILL BE WALKING

3936
02:43:48,840 --> 02:43:50,800
AROUND GETTING HELP AFTER WEEKS

3937
02:43:50,800 --> 02:43:53,520
OF TRYING TO GET IN SOMEONE. THE

3938
02:43:53,520 --> 02:43:55,040
OTHER THING I WAS THINKING AT

3939
02:43:55,040 --> 02:43:56,720
THE SAME TAME, I HAVE A VERY

3940
02:43:56,720 --> 02:43:59,200
SIMILAR STORY WHERE IT TOOK

3941
02:43:59,200 --> 02:44:00,400
YEARS FOR DOCTOR TO UNDERSTAND

3942
02:44:00,400 --> 02:44:03,040
AN LISTEN TO ME WHEN I WAS

3943
02:44:03,040 --> 02:44:04,320
SAYING I WAS HAVING SOME KIND OF

3944
02:44:04,320 --> 02:44:07,720
ISSUE. AND THEN YEARS BEFORE IT

3945
02:44:07,720 --> 02:44:09,320
WAS CORRECTLY DIAGNOSED SO IT IS

3946
02:44:09,320 --> 02:44:11,040
A HAPPY NOT HAPPY BECAUSE SHE

3947
02:44:11,040 --> 02:44:16,600
REALLY DOES HAVE A NEUROLOGICAL

3948
02:44:16,600 --> 02:44:18,360
DISABILITY NOW BUT HAPPY THAT I

3949
02:44:18,360 --> 02:44:19,800
THINK SHE FELT VALIDATED FOR THE

3950
02:44:19,800 --> 02:44:23,520
FIRST TIME IN HER CARE. AND I

3951
02:44:23,520 --> 02:44:26,160
FELT HAPPY THAT I COULD BE THAT

3952
02:44:26,160 --> 02:44:28,200
PERSON TO GIVE HER THAT

3953
02:44:28,200 --> 02:44:29,000
VALIDATION SUPPORT AND I THIS I

3954
02:44:29,000 --> 02:44:31,800
THAT IS ONE OF THE CASES, I KNOW

3955
02:44:31,800 --> 02:44:32,960
EVERYBODY HAS SEVERAL THAT

3956
02:44:32,960 --> 02:44:35,200
CHANGED TRAJECTORY OF LIFE,

3957
02:44:35,200 --> 02:44:38,200
LUCKILY I HAVE LOTS OF

3958
02:44:38,200 --> 02:44:40,840
OPPORTUNITIES TO INTERACT WITH

3959
02:44:40,840 --> 02:44:43,240
OTHER DISABLED PEOPLE WROTE AN

3960
02:44:43,240 --> 02:44:44,200
ARTICLE AND WRITING ANOTHER ONE

3961
02:44:44,200 --> 02:44:45,680
THAT IS ABOUT SOME OF THESE

3962
02:44:45,680 --> 02:44:47,840
INSTANCES AROUND DISCLOSURE.

3963
02:44:47,840 --> 02:44:49,360
PARTICULARLY FOR KIDS WITH

3964
02:44:49,360 --> 02:44:54,640
DISPARITIEDISABILITY TO SHADDOCD

3965
02:44:54,640 --> 02:44:55,920
SIMILAR KINDS OF THINGS. SO YEAH

3966
02:44:55,920 --> 02:44:59,120
I THINK IT IS SOMETHING THAT HAS

3967
02:44:59,120 --> 02:45:02,000
BEEN -- BEING HAVING MY ILLNESS

3968
02:45:02,000 --> 02:45:04,160
WOULD HAVE CHANGED TRAJECTORY OF

3969
02:45:04,160 --> 02:45:06,480
MY CAREER ANYWAY, BUT I THINK

3970
02:45:06,480 --> 02:45:08,720
THAT ALL OF THIS IN PARTICULARLY

3971
02:45:08,720 --> 02:45:09,960
CONNECTING WITH OTHER DISABLED

3972
02:45:09,960 --> 02:45:11,640
PEOPLE AND BEING ABLE TO HAVE

3973
02:45:11,640 --> 02:45:13,360
THOSE MOMENTS WHERE WE SEE EACH

3974
02:45:13,360 --> 02:45:14,320
OTHER OR UNDERSTAND WHERE WE ARE

3975
02:45:14,320 --> 02:45:16,880
COMING FROM, IS VALUABLE TO MY

3976
02:45:16,880 --> 02:45:18,720
DEVELOPMENT AS PHYSICIAN AND

3977
02:45:18,720 --> 02:45:20,680
MADE ME EVEN MORE PASSIONATE

3978
02:45:20,680 --> 02:45:22,600
ABOUT CARING FOR DISABLED PEOPLE

3979
02:45:22,600 --> 02:45:27,240
IN MEDICINE. 

3980
02:45:27,240 --> 02:45:30,240
>>I CHOSE TO NOT SEE
PATIENTS

3981
02:45:30,240 --> 02:45:33,000
ANY MORE AFTER MY DISABILITY. I

3982
02:45:33,000 --> 02:45:35,560
THOUGHT ABOUT DOING A FELLOWSHIP

3983
02:45:35,560 --> 02:45:37,560
IN SPINAL CORD INJURY WHICH

3984
02:45:37,560 --> 02:45:41,760
WOULD HAVE BEEN LIKE ONE YEAR

3985
02:45:41,760 --> 02:45:42,960
AFTER MY -- IT WOULD HAVE BEEN

3986
02:45:42,960 --> 02:45:45,680
ONLY A ONE YEAR BUT WHEN I WENT

3987
02:45:45,680 --> 02:45:50,840
INTO THE SPINAL CORD INJURY UNIT

3988
02:45:50,840 --> 02:45:53,280
I HAD SERIOUS PTSD TYPE SYMPTOMS

3989
02:45:53,280 --> 02:45:58,160
AND STARTED FEELING VERY UNWELL.

3990
02:45:58,160 --> 02:46:00,720
SO I DIDN'T WANT MY LIFE TO

3991
02:46:00,720 --> 02:46:02,960
REVOLVE AROUND MY DISABILITY SO

3992
02:46:02,960 --> 02:46:04,480
DECIDED TO RETRAIN. I WOULD SAY

3993
02:46:04,480 --> 02:46:07,360
MOST OF MY INSIGHTS HAVE COME

3994
02:46:07,360 --> 02:46:08,840
FROM OTHER SIDE.  LIKE THINGS I

3995
02:46:08,840 --> 02:46:11,560
HAVE LEARNED AS A PATIENT THAT

3996
02:46:11,560 --> 02:46:13,680
CAN HELP THE HEALTHCARE SYSTEM

3997
02:46:13,680 --> 02:46:16,520
OR HELP EDUCATE OTHER DOCTORS.

3998
02:46:16,520 --> 02:46:19,840
RATHER THAN MY DISABILITY GIVING

3999
02:46:19,840 --> 02:46:20,960
ME THE INSIGHT TO HELP OTHER

4000
02:46:20,960 --> 02:46:24,960
PEOPLE. BUT I HAVE HEARD FROM A

4001
02:46:24,960 --> 02:46:29,200
LOT OF OTHER DISABLED

4002
02:46:29,200 --> 02:46:29,840
PHYSICIANS, SIMILAR STORIES TO

4003
02:46:29,840 --> 02:46:37,320
WHAT DIANA SAID, WHERE ONE'S

4004
02:46:37,320 --> 02:46:38,920
INSIGHT AND THE CHANGES AND

4005
02:46:38,920 --> 02:46:40,920
TYPES OF QUESTIONS THEY ASK AND

4006
02:46:40,920 --> 02:46:44,520
THE LENS THEY TAKE AFFECTED BE I

4007
02:46:44,520 --> 02:46:47,480
THEIR DISABILITY HAS LED TO

4008
02:46:47,480 --> 02:46:50,320
BETTER INSIGHTS INTO WHAT A

4009
02:46:50,320 --> 02:46:52,840
PATIENT NEEDS AND INTO MAKING

4010
02:46:52,840 --> 02:46:55,840
IMPORTANT DIAGNOSES. NOT JUST

4011
02:46:55,840 --> 02:46:56,760
DIAGNOSES BUT TREATMENT PLANS

4012
02:46:56,760 --> 02:47:02,680
THAT MATTER. 

4013
02:47:02,680 --> 02:47:04,800
>>THAT IS AN NIH EVENT
RESEARCH

4014
02:47:04,800 --> 02:47:07,360
AGE L A BIT NOT JUST CLINICAL

4015
02:47:07,360 --> 02:47:08,880
SPACE BUT DOING RESEARCH MANY A

4016
02:47:08,880 --> 02:47:11,000
POPULATION THAT I'M PART OF IS

4017
02:47:11,000 --> 02:47:13,320
ALSO INFLUENCED BIT OF HOW I

4018
02:47:13,320 --> 02:47:14,760
APPROACH RESEARCH AND WHAT I

4019
02:47:14,760 --> 02:47:15,800
TALK ABOUT AS I HAVE BEEN

4020
02:47:15,800 --> 02:47:17,240
REALIZING DISCUSSION CHAPTER IN

4021
02:47:17,240 --> 02:47:18,880
MY Ph.D. IS MY CHANCE TO GET

4022
02:47:18,880 --> 02:47:21,080
ON ALL THE SOAP BOXES. THAT

4023
02:47:21,080 --> 02:47:22,720
INCLUDES THINGS LIKE I WORK ON

4024
02:47:22,720 --> 02:47:25,320
OUTCOME PREDICTION,

4025
02:47:25,320 --> 02:47:26,520
DEVELOPMENTAL OUTCOME PREDICTION

4026
02:47:26,520 --> 02:47:28,520
AND PRE-TERM BIRTH.  WHEN PEOPLE

4027
02:47:28,520 --> 02:47:29,840
HEAR AND THINK ABOUT THAT IN A

4028
02:47:29,840 --> 02:47:31,640
RESEARCH SPACE THEY THINK OH

4029
02:47:31,640 --> 02:47:32,880
RIGHT WE CAN DECIDE WHICH TO

4030
02:47:32,880 --> 02:47:35,960
REALLY GET ON REFERRALS FOR

4031
02:47:35,960 --> 02:47:36,920
EARLIER EX MANIED THAT IS

4032
02:47:36,920 --> 02:47:38,320
IMPORTANT BUT ALSO I'M BRINGING

4033
02:47:38,320 --> 02:47:40,520
TO THE TABLE THE IDEA WE NEED TO

4034
02:47:40,520 --> 02:47:41,960
THINK ABOUT THESE ARE

4035
02:47:41,960 --> 02:47:43,880
POTENTIALLY KIDS WHO MIGHT NEED

4036
02:47:43,880 --> 02:47:46,240
TO GET INTEGRATED TO DISABILITY

4037
02:47:46,240 --> 02:47:47,760
COMMUNITY CENTER START PLANNING

4038
02:47:47,760 --> 02:47:49,160
ACCOMMODATIONS AND WRITING SECS

4039
02:47:49,160 --> 02:47:51,160
IN THERE THOSE RE-- SECTIONS IN

4040
02:47:51,160 --> 02:47:52,520
THOSE RESEARCH SHOWING THAT,

4041
02:47:52,520 --> 02:47:54,320
BEING IN THE GENERAL CULTURAL

4042
02:47:54,320 --> 02:47:56,080
MILIEU, PARENTS ARE PROBABLY

4043
02:47:56,080 --> 02:47:58,520
BRINGING ABLEISM INTO THIS

4044
02:47:58,520 --> 02:47:59,840
CHILD'S LIFE BEGINNING AND HOW

4045
02:47:59,840 --> 02:48:01,400
WE HELP THEM WORK THROUGH THAT

4046
02:48:01,400 --> 02:48:03,440
MORE QUICKLY.  THESE ARE ASPECTS

4047
02:48:03,440 --> 02:48:05,480
THAT WOULDN'T HAVE COME UP IF I

4048
02:48:05,480 --> 02:48:07,120
HAD JUST BEEN STANDARD PERSON

4049
02:48:07,120 --> 02:48:12,760
COMING TO THIS RESEARCH SPACE.  

4050
02:48:12,760 --> 02:48:13,840
BRINGING DIFFERENT ASPECT OF

4051
02:48:13,840 --> 02:48:14,800
LIFE AND THINKING ABOUT THE

4052
02:48:14,800 --> 02:48:16,960
WIDER RANGING IMPACT BECAUSE I

4053
02:48:16,960 --> 02:48:18,760
WORK ON MOTOR DISABILITY IT IS

4054
02:48:18,760 --> 02:48:20,440
NOT JUST DO THESE KIDS WALK AND

4055
02:48:20,440 --> 02:48:22,240
HOW WELL BUT HOW IT IMPACTS

4056
02:48:22,240 --> 02:48:23,600
SCHOOL, MAKING FRIENDS AND GOING

4057
02:48:23,600 --> 02:48:25,440
ABOUT HAVING HOBBIES AND ALL IN

4058
02:48:25,440 --> 02:48:27,160
THIS DIFFERENT ASPECTS OF LIFE.

4059
02:48:27,160 --> 02:48:29,520
SO BRINGING THAT BROADER

4060
02:48:29,520 --> 02:48:31,120
PERSPECTIVE AND THINKING ABOUT

4061
02:48:31,120 --> 02:48:33,080
MORE THAN NARROW MEDICAL

4062
02:48:33,080 --> 02:48:34,280
COMPONENT IS AN IMPORTANT THING

4063
02:48:34,280 --> 02:48:35,200
THIS CAN BRING TO THE RESEARCH

4064
02:48:35,200 --> 02:48:40,360
SPACE. 

4065
02:48:40,360 --> 02:48:44,720
>>SO WE ARE NOW 20
MINUTES PAST

4066
02:48:44,720 --> 02:48:46,600
OUR SUPPOSED END OF OUR SESSION

4067
02:48:46,600 --> 02:48:49,920
WHICH I THINK SPEAKS JUST TO THE

4068
02:48:49,920 --> 02:48:54,800
AMAZING EXPERTISE AND PRESENCE

4069
02:48:54,800 --> 02:48:57,360
OF OUR SPEAKERS, AND TO THE HIGH

4070
02:48:57,360 --> 02:48:59,200
LEVEL INTEREST IN THIS TOPIC. I

4071
02:48:59,200 --> 02:49:00,920
DO WANT TO APOLOGIZE TO THOSE

4072
02:49:00,920 --> 02:49:02,240
WHO PUT IN QUESTIONS THAT WE

4073
02:49:02,240 --> 02:49:05,240
WESTERN ABLE TO GET TO. WE WILL

4074
02:49:05,240 --> 02:49:07,040
TRY TO RESPOND TO THEM OUTSIDE

4075
02:49:07,040 --> 02:49:09,440
THE MEETING AS MUCH AS WE CAN. I

4076
02:49:09,440 --> 02:49:12,280
WANTED TO EXTEND MY OWN

4077
02:49:12,280 --> 02:49:13,280
INCREDIBLY DEEP PERSONAL

4078
02:49:13,280 --> 02:49:14,680
GRATITUDE TO OUR THREE SPEAKERS

4079
02:49:14,680 --> 02:49:15,800
WHO HAVE BEEN AMAZING TO WORK

4080
02:49:15,800 --> 02:49:17,280
WITH AND PLANNING THIS SESSION

4081
02:49:17,280 --> 02:49:19,720
AND FROM WHOM I LEARNED

4082
02:49:19,720 --> 02:49:20,640
INCREDIBLE AMOUNT TODAY. THANK

4083
02:49:20,640 --> 02:49:27,120
YOU VERY MUCH. I AM GOING TO

4084
02:49:27,120 --> 02:49:28,760
SEND US ALL TO OUR BREAK WHICH

4085
02:49:28,760 --> 02:49:30,760
WAS ORIGINALLY A ONE HOUR BREAK

4086
02:49:30,760 --> 02:49:32,360
AN NOW 40 MINUTE BREAK. TO THOSE

4087
02:49:32,360 --> 02:49:35,320
OF YOU ON ZOOM, PLEASE STAY LOG

4088
02:49:35,320 --> 02:49:38,360
ON TO ZOOM, WE ARE GOING TO PUT

4089
02:49:38,360 --> 02:49:40,560
UP A BREAK SLIDE AND PLEASE

4090
02:49:40,560 --> 02:49:46,080
RETURN ON THE HOUR. 2 P.M.

4091
02:49:46,080 --> 02:49:48,360
EASTERN AND I CAN'T DO THE MATH.

4092
02:49:48,360 --> 02:49:53,520
1 P.M. CENTRAL, NOON MOUNTAIN

4093
02:49:53,520 --> 02:49:55,320
AND 11 A.M. PACIFIC. MY DEEPEST

4094
02:49:55,320 --> 02:49:56,600
GRATITUDE TO YOU ARE SPEAKERS

4095
02:49:56,600 --> 02:49:58,920
AND TO ALL OF THOSE WHO ARE

4096
02:49:58,920 --> 02:50:00,800
PARTICIPATING IN THIS

4097
02:50:00,800 --> 02:50:05,520
DISCUSSION. HAVE A GOOD DAY.  

4098
02:50:05,520 --> 02:50:08,360
>>WELCOME BACK, EVERYBODY TO

4099
02:50:08,360 --> 02:50:12,160
THE ABLEISM WORKSHOP.

4100
02:50:12,160 --> 02:50:13,920
WE HAVE LOTS MORE REALLY

4101
02:50:13,920 --> 02:50:15,640
EXCITING AND INTERESTING

4102
02:50:15,640 --> 02:50:17,440
ACTIVITIES OR SPEAKERS FOR THE

4103
02:50:17,440 --> 02:50:19,800
REMAINDER OF TODAY.

4104
02:50:19,800 --> 02:50:21,080
I HOPE YOU WILL STICK AROUND

4105
02:50:21,080 --> 02:50:27,320
FORT REST OF THE AFTERNOON.

4106
02:50:27,320 --> 02:50:32,360
WE WILL BEGIN WITH SESSION 4

4107
02:50:32,360 --> 02:50:33,040
OPPORTUNITIES TO ADDRESS ABLEISM

4108
02:50:33,040 --> 02:50:37,160
IN THE BIOMEDICAL RESEARCH

4109
02:50:37,160 --> 02:50:43,200
COMMUNITY.

4110
02:50:43,200 --> 02:50:46,800
I'M SORRY -- I WASN'T ON CAMERA.

4111
02:50:46,800 --> 02:50:52,240
THERE WE GO.

4112
02:50:52,240 --> 02:50:55,240
SO, I AM -- MY NAME IS KATHY

4113
02:50:55,240 --> 02:50:56,880
MANN KOEPKE AND I'M FROM THE

4114
02:50:56,880 --> 02:50:58,480
CHILD AND HEALTH AND HUMAN

4115
02:50:58,480 --> 02:50:58,840
DEVELOPMENT.

4116
02:50:58,840 --> 02:51:01,080
I'M HONORED TO SERVE AS A

4117
02:51:01,080 --> 02:51:03,680
MODERATOR AT THIS INCREDIBLY

4118
02:51:03,680 --> 02:51:05,520
IMPORTANT MEETING WHICH HAS

4119
02:51:05,520 --> 02:51:11,600
ALREADY GUN HUGELY INFORMATIVE,

4120
02:51:11,600 --> 02:51:14,600
EDUCATIONAL AND I ANTICIPATE

4121
02:51:14,600 --> 02:51:16,280
THAT IT WILL CONTINUE TO BE

4122
02:51:16,280 --> 02:51:17,680
UNTIL LAST MINUTE.

4123
02:51:17,680 --> 02:51:21,360
I FIE AS A WHITE HISPANIC WOMAN

4124
02:51:21,360 --> 02:51:23,520
WITH MULTIPLE ONSET DIAGNOSIS

4125
02:51:23,520 --> 02:51:24,680
THAT TOGETHER WITH THE WORLD I

4126
02:51:24,680 --> 02:51:29,680
LIVE IN, HAS CREATED BARRIERS TO

4127
02:51:29,680 --> 02:51:31,480
FULL INCLUSION.

4128
02:51:31,480 --> 02:51:36,920
I HAVE SALT AND PEPPER,

4129
02:51:36,920 --> 02:51:38,920
SHOULDER-LENGTH WAVY HAIR AND

4130
02:51:38,920 --> 02:51:40,360
WEARING RIM LESS EYEGLASSES AND

4131
02:51:40,360 --> 02:51:43,040
A BLACK AND WHITE LEAF MOTIF

4132
02:51:43,040 --> 02:51:44,360
BLOUSE AND A BLACK JACKET.

4133
02:51:44,360 --> 02:51:47,600
I ALSO IDENTIFY AS A MOM OF A

4134
02:51:47,600 --> 02:51:51,800
PERSON WHO ALSO IS IDENTIFIED AS

4135
02:51:51,800 --> 02:51:53,280
DISABLED WITH DIAGNOSIS

4136
02:51:53,280 --> 02:51:55,040
UNRELATED TO MY OWN.

4137
02:51:55,040 --> 02:51:58,680
PROFESSIONALLY, I IDENTIFY AS A

4138
02:51:58,680 --> 02:52:00,240
LIFE COURSE DEVELOPMENTAL

4139
02:52:00,240 --> 02:52:02,480
COGNITIVE NURSE

4140
02:52:02,480 --> 02:52:03,120
SCIENTIST/EYECOLOGIST WITH A

4141
02:52:03,120 --> 02:52:05,960
FOCUS ON THE NEUROBIOLOGY OF

4142
02:52:05,960 --> 02:52:08,840
LEARNING AND NEURO COGNITIVE

4143
02:52:08,840 --> 02:52:10,640
DEVELOPMENT AND COGNITIVE

4144
02:52:10,640 --> 02:52:14,120
DISABILITIES IN LEARNING AND

4145
02:52:14,120 --> 02:52:15,320
COGNITION.

4146
02:52:15,320 --> 02:52:16,960
THROUGHOUT THE LIFE, BOTH IN

4147
02:52:16,960 --> 02:52:19,120
HUMAN AND ANIMAL MODELS.

4148
02:52:19,120 --> 02:52:22,480
IN ADDITION TO MY MORE TYPICAL

4149
02:52:22,480 --> 02:52:25,000
ACADEMIC ACHIEVEMENTS, I TAKE MY

4150
02:52:25,000 --> 02:52:27,760
PASSION AND ADVOCACY TO RACE UP

4151
02:52:27,760 --> 02:52:30,280
THE VOICES OF PERSONS WITH

4152
02:52:30,280 --> 02:52:36,080
ABILITY DIFFERENCES OF ALL

4153
02:52:36,080 --> 02:52:36,840
TYPES, TO THE COMMUNITIES WHERE

4154
02:52:36,840 --> 02:52:37,760
I LIVE AND WORK.

4155
02:52:37,760 --> 02:52:40,600
I'M A BIG BELIEVER OF VOLUNTARY.

4156
02:52:40,600 --> 02:52:42,440
I I'D LIKE TO REMIND EVERYBODY

4157
02:52:42,440 --> 02:52:43,960
HOW WE PLAN TO MOVE FORWARD WITH

4158
02:52:43,960 --> 02:52:46,920
THIS PANEL, AND I'LL INTRODUCE

4159
02:52:46,920 --> 02:52:48,920
EACH SPEAKER FOLLOWED BY THEIR

4160
02:52:48,920 --> 02:52:52,920
PREVIOUS PRESENTATION AND HAVE A

4161
02:52:52,920 --> 02:52:54,680
CHIEF ANSWER AND ANSWER PERIOD.

4162
02:52:54,680 --> 02:52:56,200
DON'T FORGET THOSE IN THE

4163
02:52:56,200 --> 02:52:57,560
AUDIENCE TO ENTER YOUR QUESTIONS

4164
02:52:57,560 --> 02:53:08,080
INTO THE Q&A SECTION AND NOT
AND

4165
02:53:18,560 --> 02:53:21,120
I WILL APOLOGIZE IF WE CAN'T GET

4166
02:53:21,120 --> 02:53:23,360
TO YOUR ANSWERS.

4167
02:53:23,360 --> 02:53:24,520
WE WILL ANSWER THEM LIVE DURING

4168
02:53:24,520 --> 02:53:28,920
THE MEETING OR BY E-MAIL AFTER

4169
02:53:28,920 --> 02:53:32,400
THE MEETING.

4170
02:53:32,400 --> 02:53:37,240
LET ME FIRST OUR FIRST SPEAKER

4171
02:53:37,240 --> 02:53:39,040
AND MYA SABATELLO IS AN

4172
02:53:39,040 --> 02:53:41,640
ASSISTANT PROFESSOR OF CLINICAL

4173
02:53:41,640 --> 02:53:43,640
BIOETHICS IN THE DEPARTMENT OF

4174
02:53:43,640 --> 02:53:49,680
PSYCHIATRY AT COLOMBIA

4175
02:53:49,680 --> 02:53:55,240
UNIVERSITIES SHE HOLDS A PH.D

4176
02:53:55,240 --> 02:53:56,360
FROM THE UNIVERSITY OF SOUTHERN

4177
02:53:56,360 --> 02:53:59,160
CALIFORNIA AND A LLB FROM THE

4178
02:53:59,160 --> 02:54:01,240
HEBREW UNIVERSITY OF JERUSALEM.

4179
02:54:01,240 --> 02:54:03,320
SHE WAS APPOINTED AS A RESEARCH

4180
02:54:03,320 --> 02:54:06,200
FELLOW IN MEDICAL ETHICS AND

4181
02:54:06,200 --> 02:54:07,880
HARVARD UNIVERSITY'S MEDICAL

4182
02:54:07,880 --> 02:54:12,920
SCHOOL IN 2011 AND SHE HAS

4183
02:54:12,920 --> 02:54:15,680
LITIGATED CASES FOR MEDICAL

4184
02:54:15,680 --> 02:54:16,840
NEGLIGENCE AND HAS WORKED AS A

4185
02:54:16,840 --> 02:54:19,920
LEGAL ADVISER AT NATIONAL AND

4186
02:54:19,920 --> 02:54:22,080
INTERNATIONAL NON GOVERNMENTAL

4187
02:54:22,080 --> 02:54:24,320
ORGANIZATIONS TO PROMOTE

4188
02:54:24,320 --> 02:54:26,920
HEALTH-RELATED HUMAN RIGHTS AND

4189
02:54:26,920 --> 02:54:27,800
DISABILITY ISSUES.

4190
02:54:27,800 --> 02:54:30,680
AS A PERMANENT REPRESENTATIVE

4191
02:54:30,680 --> 02:54:31,960
FOR NON GOVERNMENT ORGANIZATIONS

4192
02:54:31,960 --> 02:54:35,400
AT THE UNITED NATIONS, SHE ALSO

4193
02:54:35,400 --> 02:54:36,520
PARTICIPATES IN THE U.N.

4194
02:54:36,520 --> 02:54:38,720
SESSIONS ON THE FORMULATION OF

4195
02:54:38,720 --> 02:54:40,440
THE CONVENTION ON THE RIGHTS OF

4196
02:54:40,440 --> 02:54:43,040
PERSONS WITH DISABILITIES.

4197
02:54:43,040 --> 02:54:47,760
SO, WELCOME, MAYA AND PLEASE,

4198
02:54:47,760 --> 02:54:48,600
TAKE IT OVER.

4199
02:54:48,600 --> 02:54:50,640
>>THANK YOU SO MUCH,
KATHY, I

4200
02:54:50,640 --> 02:54:51,440
APPRECIATE IT.

4201
02:54:51,440 --> 02:54:52,280
IT'S GREAT TO BE HERE.

4202
02:54:52,280 --> 02:54:54,440
THANK YOU FOR IN INVITING ME AND

4203
02:54:54,440 --> 02:54:57,880
WHAT A WONDERFUL CONFERENCE.

4204
02:54:57,880 --> 02:55:00,440
I AM AN ASSOCIATE PROFESSOR AT

4205
02:55:00,440 --> 02:55:02,360
COLOMBIA UNIVERSITY CENTER FOR

4206
02:55:02,360 --> 02:55:03,560
PRECISION MEDICINE AND GENOMICS

4207
02:55:03,560 --> 02:55:10,800
AND THE DIVISION OF ETHICS.

4208
02:55:10,800 --> 02:55:16,000
AND -- AND PROCEDURE MEDICINE

4209
02:55:16,000 --> 02:55:17,840
AND RESEARCH AND OTHER

4210
02:55:17,840 --> 02:55:19,680
SCRIPTERS, I AM A WHITE WOMAN

4211
02:55:19,680 --> 02:55:21,440
WITH LONG CURLY, DARK HAIR.

4212
02:55:21,440 --> 02:55:23,360
ROUND, BLACK AND PURPLE GLASSES

4213
02:55:23,360 --> 02:55:27,120
AND WEARING A BLACK SHIRT AND A

4214
02:55:27,120 --> 02:55:27,520
TURQUOISE BLAZER.

4215
02:55:27,520 --> 02:55:31,000
I'M A LOW-VISION INDIVIDUAL AND

4216
02:55:31,000 --> 02:55:34,760
SHARE BONNIE'S COMMENTS

4217
02:55:34,760 --> 02:55:35,840
YESTERDAY MORNING ABOUT

4218
02:55:35,840 --> 02:55:36,280
IDENTITIES.

4219
02:55:36,280 --> 02:55:46,720
I WANT TO SHARE MY SLIDES.

4220
02:55:49,880 --> 02:55:51,520
ALL RIGHT.

4221
02:55:51,520 --> 02:55:51,840
SO -- CAN.

4222
02:55:51,840 --> 02:55:55,440
>>CAN YOU MOVE INTO
PRESENTER

4223
02:55:55,440 --> 02:55:56,000
MODE, PLEASE.

4224
02:55:56,000 --> 02:55:56,640
>>THERE WE GO.

4225
02:55:56,640 --> 02:55:57,880
>>CAN YOU SEE IT?

4226
02:55:57,880 --> 02:55:58,280
>>YES.

4227
02:55:58,280 --> 02:56:00,320
>>FANTASTIC.

4228
02:56:00,320 --> 02:56:01,480
THANK YOU.

4229
02:56:01,480 --> 02:56:02,920
SO, THE TITLE OF MY TALK IS

4230
02:56:02,920 --> 02:56:03,920
INCLUSION OF PEOPLE WITH

4231
02:56:03,920 --> 02:56:05,560
DISABILITY AND BIOMEDICAL

4232
02:56:05,560 --> 02:56:07,240
RESEARCH WITH A QUESTION MARK.

4233
02:56:07,240 --> 02:56:16,440
AND WHAT I HOPE TO DO AND I'LL

4234
02:56:16,440 --> 02:56:18,920
DISCUSS ABLEISM AND DISTRUST IN

4235
02:56:18,920 --> 02:56:20,320
BIOMEDICAL RESEARCH FOCUSING ON

4236
02:56:20,320 --> 02:56:22,320
TWO STUDIES, THREE ACTUALLY,

4237
02:56:22,320 --> 02:56:23,880
BOTH IN CLINICAL TRIALS AS WELL

4238
02:56:23,880 --> 02:56:27,640
AS PRECISION MEDICINE RESEARCH

4239
02:56:27,640 --> 02:56:29,160
AND I'LL MOVE FORWARD TO DISCUSS

4240
02:56:29,160 --> 02:56:31,920
THE DISABILITY ASPECTS FOR

4241
02:56:31,920 --> 02:56:33,480
EQUITABLE INCLUSION IN

4242
02:56:33,480 --> 02:56:35,680
BIOMEDICAL RESEARCH.

4243
02:56:35,680 --> 02:56:39,320
BEFORE WE MOVE ON, I DO ALSO

4244
02:56:39,320 --> 02:56:42,760
WANT TO GIVE A STATEMENT HERE, A

4245
02:56:42,760 --> 02:56:44,760
DISCLAIMER, I'M AN IRB MEMBER OF

4246
02:56:44,760 --> 02:56:46,400
THE ALL OF US RESEARCH PROGRAM

4247
02:56:46,400 --> 02:56:48,920
SO MY PRESENTATION IS IN MY

4248
02:56:48,920 --> 02:56:49,480
PERSONAL CAPACITY.

4249
02:56:49,480 --> 02:56:51,840
I WANT TO USE SOME UNPUBLISHED

4250
02:56:51,840 --> 02:56:54,200
MATERIALS SO PLEASE DO NOT USE

4251
02:56:54,200 --> 02:56:57,600
IT WITHOUT PERMISSION.

4252
02:56:57,600 --> 02:56:58,640
SO, THE DEFINITION OF STRUCTURAL

4253
02:56:58,640 --> 02:57:00,440
ABLEISM THAT HELPS ME AS WE GO

4254
02:57:00,440 --> 02:57:04,240
ALONG WITH THE PRESENTATION, I'M

4255
02:57:04,240 --> 02:57:05,760
LOOKING AT DEFINITION WHICH IS A

4256
02:57:05,760 --> 02:57:07,080
SYSTEM THAT PLACES VALUE ON

4257
02:57:07,080 --> 02:57:09,320
PEOPLE'S BODIES AND MINDS BASED

4258
02:57:09,320 --> 02:57:11,480
ON SOCIETALLY CONSTRUCTED IDEAS

4259
02:57:11,480 --> 02:57:13,520
OF NORMALCY, INTELLIGENCE,

4260
02:57:13,520 --> 02:57:15,040
EXCELLENCE AND PRODUCTIVITY.

4261
02:57:15,040 --> 02:57:18,960
THIS FORM OF SYSTEMIC OPPRESSION

4262
02:57:18,960 --> 02:57:20,520
LEADS TO PEOPLE AND SOCIETY

4263
02:57:20,520 --> 02:57:21,800
DETERMINE HOG IS VALUABLE AND

4264
02:57:21,800 --> 02:57:23,200
WORTHY BASED ON A PERSON'S

4265
02:57:23,200 --> 02:57:28,200
APPEARANCE AND OR THEIR ABILITY

4266
02:57:28,200 --> 02:57:29,240
TO SATISFACTORILY REPRODUCE,

4267
02:57:29,240 --> 02:57:31,400
EXCEL AND BEHAVE.

4268
02:57:31,400 --> 02:57:35,400
THE HIGHLIGHTS IS THE SOCIETAL

4269
02:57:35,400 --> 02:57:37,200
DELINEATION OF NORMAL AND TO

4270
02:57:37,200 --> 02:57:39,240
DECIDE ABOUT WHO IS WORTHY OF

4271
02:57:39,240 --> 02:57:40,640
INCLUSION AND I WANT TO

4272
02:57:40,640 --> 02:57:42,520
HIGHLIGHT THE SYSTEMIC NATURE

4273
02:57:42,520 --> 02:57:44,320
THERE OF ALL LEVELS OF SOCIETY

4274
02:57:44,320 --> 02:57:46,400
ACROSS THE SYSTEMS AND

4275
02:57:46,400 --> 02:57:48,120
ORGANIZATIONS AND ALSO THAT

4276
02:57:48,120 --> 02:57:49,560
STRUCTURAL ABLEISM IS

4277
02:57:49,560 --> 02:57:51,080
INSEPARABLE FROM OTHER FORMS OF

4278
02:57:51,080 --> 02:57:53,560
DISCRIMINATION INCLUDING SEXISM,

4279
02:57:53,560 --> 02:57:56,400
RACISM, CLASSISM AND OTHERS.

4280
02:57:56,400 --> 02:57:59,160
SO, WHAT DO WE KNOWS WHEN IT

4281
02:57:59,160 --> 02:58:00,440
COMES TO PEOPLE WITH

4282
02:58:00,440 --> 02:58:01,760
DISABILITIES IN BIOMEDICAL

4283
02:58:01,760 --> 02:58:03,320
RESEARCH AND THE REGULATIONS FOR

4284
02:58:03,320 --> 02:58:05,080
RESEARCH WITH HUMAN SUBJECTS,

4285
02:58:05,080 --> 02:58:06,640
DEVELOPED IN THE BACKGROUND ON

4286
02:58:06,640 --> 02:58:09,240
THE BACKGROUND OF WORLD WAR II

4287
02:58:09,240 --> 02:58:10,560
AND THE HISTORY OF ABUSE OF

4288
02:58:10,560 --> 02:58:11,880
PEOPLE WITH DISABILITIES AND

4289
02:58:11,880 --> 02:58:13,760
RESEARCH FROM THE NAZI REGIME TO

4290
02:58:13,760 --> 02:58:14,720
STUDIES THAT WERE CONDUCTED ON

4291
02:58:14,720 --> 02:58:16,640
PEOPLE WITH DISABILITIES, AND I

4292
02:58:16,640 --> 02:58:19,080
GUEINSTITUTIONS IN THE UNITED

4293
02:58:19,080 --> 02:58:20,360
STATES AND ELSEWHERE WITHOUT

4294
02:58:20,360 --> 02:58:24,000
CONSENT AN HYPED CLOSED DOORS.

4295
02:58:24,000 --> 02:58:26,360
EXPOSING PEOPLE WITH

4296
02:58:26,360 --> 02:58:28,160
INTELLECTUAL VISIBILITIES WITH

4297
02:58:28,160 --> 02:58:28,800
VIRUSSORS RADIATION.

4298
02:58:28,800 --> 02:58:30,880
WE HAVE FEDERAL REGULATIONS OF

4299
02:58:30,880 --> 02:58:32,040
RESEARCH THAT AIM TO ADDRESS

4300
02:58:32,040 --> 02:58:35,200
SOME OF THESE ISSUES AND ABUSES.

4301
02:58:35,200 --> 02:58:37,000
AND THEY MOVED TO CREATE

4302
02:58:37,000 --> 02:58:40,960
PROTECTION OF VULNERABLE

4303
02:58:40,960 --> 02:58:42,760
POPULATIONS WHICH FROM THE

4304
02:58:42,760 --> 02:58:44,280
REGULATIONS INCLUDES CHILDREN,

4305
02:58:44,280 --> 02:58:46,320
PRISONERS, PREGNANT WOMEN,

4306
02:58:46,320 --> 02:58:48,720
MENTALLY DISABLED PERSONS OR

4307
02:58:48,720 --> 02:58:51,520
ECONOMIC OR EDUCATIONAL

4308
02:58:51,520 --> 02:58:52,440
DISADVANTAGED PERSONS.

4309
02:58:52,440 --> 02:58:55,360
AND THEY REQUIRE ALSO PROXY OR

4310
02:58:55,360 --> 02:58:56,160
GUARDIAN CONTENT WHEN

4311
02:58:56,160 --> 02:58:58,360
INDIVIDUALS CANNOT PROVIDE

4312
02:58:58,360 --> 02:58:59,960
CONSENT.

4313
02:58:59,960 --> 02:59:01,160
SIGNIFICANTLY, NIH POLICY

4314
02:59:01,160 --> 02:59:03,240
REGARDING PEOPLE WITH SO-CALLED

4315
02:59:03,240 --> 02:59:04,920
QUESTIONABLE CAPACITY TO

4316
02:59:04,920 --> 02:59:10,720
CONCEPT, WHICH HAVE INCLUDED

4317
02:59:10,720 --> 02:59:12,240
PROHIBITS CATEGORIC ALEX

4318
02:59:12,240 --> 02:59:13,080
CONCLUSION AND REQUIRES

4319
02:59:13,080 --> 02:59:16,480
ASSESSMENT OF CAPACITY TO

4320
02:59:16,480 --> 02:59:17,120
CONSENT.

4321
02:59:17,120 --> 02:59:18,800
SO THAT EFFORTS TO PROTECT FROM

4322
02:59:18,800 --> 02:59:21,520
ABUSE ON THE ONE HAND, ON THE

4323
02:59:21,520 --> 02:59:22,840
OTHER HAND INSURING

4324
02:59:22,840 --> 02:59:23,920
INDIVIDUALIZED CAPACITY

4325
02:59:23,920 --> 02:59:25,400
ASSESSMENT SHOULD ALLOW FOR IN

4326
02:59:25,400 --> 02:59:26,760
CONCLUSION OF PEOPLE WITH DIS

4327
02:59:26,760 --> 02:59:31,440
AMOUNTS IN DIVERSE RESEARCH

4328
02:59:31,440 --> 02:59:32,840
PROJECTS.

4329
02:59:32,840 --> 02:59:34,040
THAT DOES NOT SEEM TO BE THE

4330
02:59:34,040 --> 02:59:34,400
CASE.

4331
02:59:34,400 --> 02:59:36,400
IN A STUDY WITH MY COLLEAGUES

4332
02:59:36,400 --> 02:59:39,920
Dr. KATIE MCDONALD'S FROM

4333
02:59:39,920 --> 02:59:41,440
SYRACUSE UNIVERSITY AND Dr.

4334
02:59:41,440 --> 02:59:42,600
SCHWARTZ FROM THE INSTITUTE OF

4335
02:59:42,600 --> 02:59:44,320
HEALTH PROFESSIONS IN BOSTON,

4336
02:59:44,320 --> 02:59:45,960
WHICH YOU CAN SEE THE FIRST PAGE

4337
02:59:45,960 --> 02:59:50,280
OF THE MANUSCRIPT ON THE RIDE OF

4338
02:59:50,280 --> 02:59:52,600
THE SLIDE AND WE LIKED AT TRIALS

4339
02:59:52,600 --> 02:59:55,720
ON GOING AND THAT WERE OPEN TO

4340
02:59:55,720 --> 02:59:56,760
WORKING AGE VICTIMS FROM THE

4341
02:59:56,760 --> 02:59:59,360
GENERAL PUBLIC BETWEEN

4342
02:59:59,360 --> 03:00:00,640
FEBRUARY 2018 AND FEBRUARY 2021

4343
03:00:00,640 --> 03:00:03,000
AND WE FOCUSED ON CLINICAL

4344
03:00:03,000 --> 03:00:08,800
TRIALS TWO OR THREE AND FOUR AND

4345
03:00:08,800 --> 03:00:11,760
ARE LESS RISKY WITH PHASES 3 AND

4346
03:00:11,760 --> 03:00:14,960
4.

4347
03:00:14,960 --> 03:00:25,480
WE IDENTIFIED INCLUDES BASED ON

4348
03:00:34,720 --> 03:00:40,920
INTELLECTUAL DISABILITY AND

4349
03:00:40,920 --> 03:00:42,400
HIGH-IMPACT ON ADULTS WITH

4350
03:00:42,400 --> 03:00:44,480
DISABILITIES AND THAT INCLUDES

4351
03:00:44,480 --> 03:00:45,800
FUNCTIONAL CAPACITY AND SUCH AS

4352
03:00:45,800 --> 03:00:49,440
NON PERFORMING CERTAIN TASKS OR

4353
03:00:49,440 --> 03:00:51,000
SELF-CASE, ABILITY TO READ AND

4354
03:00:51,000 --> 03:00:56,080
WRITE AND TECH DIVIDE AND STAFF

4355
03:00:56,080 --> 03:01:06,280
DISCRETION.

4356
03:01:27,320 --> 03:01:29,840
AND CHRONIC CONDITIONS AT 10.1%

4357
03:01:29,840 --> 03:01:33,120
AND INFECTIOUS DISEASES AT 8.9%

4358
03:01:33,120 --> 03:01:37,360
AND COVID-19 STUDIES AT 7.3%.

4359
03:01:37,360 --> 03:01:40,640
MOST OF THE STUDIES WERE PHASE 3

4360
03:01:40,640 --> 03:01:41,840
WHICH JUST TO EXPLAIN THAT IS

4361
03:01:41,840 --> 03:01:43,760
THE FINAL PHASE BEFORE A

4362
03:01:43,760 --> 03:01:46,680
TREATMENT RECEIVED FDA APPROVAL.

4363
03:01:46,680 --> 03:01:50,080
FOLLOWED BY PHASE 4 WHICH WE HAD

4364
03:01:50,080 --> 03:01:53,640
32%, PHASE 3 WE HAD 54.8% AND

4365
03:01:53,640 --> 03:01:57,200
PAGE 4 WE HAD 32.7% WHICH COMES

4366
03:01:57,200 --> 03:01:59,640
AFTER THE FDA APPROVAL IT'S

4367
03:01:59,640 --> 03:02:00,640
ESSENTIALLY THE MONEY TOURING

4368
03:02:00,640 --> 03:02:03,520
PHASE OF THE EXPERIMENTED

4369
03:02:03,520 --> 03:02:04,040
TREATMENT.

4370
03:02:04,040 --> 03:02:05,480
SO, WHAT ARE OUR FINDINGS IN

4371
03:02:05,480 --> 03:02:07,360
TERMS OF INCLUSION?

4372
03:02:07,360 --> 03:02:08,920
OF PEOPLE, ADULTS WITH

4373
03:02:08,920 --> 03:02:10,320
INTELLECTUAL DISABILITIES IN

4374
03:02:10,320 --> 03:02:11,880
THESE NIH FUNDED CLINICAL

4375
03:02:11,880 --> 03:02:12,560
TRIALS.

4376
03:02:12,560 --> 03:02:13,720
SO, THE FIRST THING WE FOUND

4377
03:02:13,720 --> 03:02:15,760
WHICH THE GOOD NEWS IS THAT WE

4378
03:02:15,760 --> 03:02:18,640
FOUND LESS DIAGNOSTIC BASED

4379
03:02:18,640 --> 03:02:19,800
EXCLUSIONS THAN WE THOUGHT WE

4380
03:02:19,800 --> 03:02:22,360
WOULD FIND JUST ABOUT FIVE

4381
03:02:22,360 --> 03:02:23,880
PERCENT AND ANOTHER SIX PERCENT

4382
03:02:23,880 --> 03:02:26,240
THAT WERE INCLUDED BASED ON

4383
03:02:26,240 --> 03:02:28,160
COGNITIVE CAPACITY.

4384
03:02:28,160 --> 03:02:30,880
HOWEVER, THE LESS GOOD NEWS IS

4385
03:02:30,880 --> 03:02:36,920
THAT EXPLICIT INCLUSION IS RARE

4386
03:02:36,920 --> 03:02:40,360
ONLY 12.7% OF THE 220 ADULT-ONLY

4387
03:02:40,360 --> 03:02:42,360
STUDIES ALLOWS CONSENT OF

4388
03:02:42,360 --> 03:02:44,720
ILLEGALLY AUTHORIZED

4389
03:02:44,720 --> 03:02:46,880
REPRESENTATIVES TO PROVIDE

4390
03:02:46,880 --> 03:02:49,160
CONSENT AND ONLY ONE STUDY

4391
03:02:49,160 --> 03:02:51,000
PROVIDED ACCOMMODATIONS AND ALSO

4392
03:02:51,000 --> 03:02:53,040
HERE IT WAS A QUESTION OF

4393
03:02:53,040 --> 03:02:57,280
ALLOWING SOME READINGS

4394
03:02:57,280 --> 03:02:58,280
ASSISTANCE IN ORDER FOR A

4395
03:02:58,280 --> 03:03:01,600
INDIVIDUAL TO PARTICIPATE IN THE

4396
03:03:01,600 --> 03:03:03,520
STUDY.

4397
03:03:03,520 --> 03:03:05,960
OVER ALL THERE ARE CRITERIA AND

4398
03:03:05,960 --> 03:03:07,400
ADULTS WITH I AM ELECT ACTUAL

4399
03:03:07,400 --> 03:03:08,320
DISABILITIES FROM CLINICAL

4400
03:03:08,320 --> 03:03:10,480
TRIALS AND THE IMAGE OF THE

4401
03:03:10,480 --> 03:03:11,680
RIGHT OF THE SLIDE SHOWS THAT

4402
03:03:11,680 --> 03:03:15,240
THE EIGHT LAYERS OF DIRECTOR

4403
03:03:15,240 --> 03:03:16,440
INDIRECT EXCLUSION CRITERIA WE

4404
03:03:16,440 --> 03:03:16,760
HAVE.

4405
03:03:16,760 --> 03:03:19,120
I'LL JUST KIND OF SAY THAT OVER

4406
03:03:19,120 --> 03:03:22,000
ALL, FINDINGS HERE, THAT ABOUT

4407
03:03:22,000 --> 03:03:24,120
33% OF THE STUDIES HAVE DIRECT

4408
03:03:24,120 --> 03:03:26,360
EXCLUSION CRITERIA BASED ON, FOR

4409
03:03:26,360 --> 03:03:28,960
EXAMPLE, CONSENT CAPACITY,

4410
03:03:28,960 --> 03:03:31,000
DIAGNOSIS OF INTELLECTUAL

4411
03:03:31,000 --> 03:03:32,640
DISABILITIES, COGNITIVE

4412
03:03:32,640 --> 03:03:33,840
CAPACITY, OR CAPACITY TO ENGAGE

4413
03:03:33,840 --> 03:03:36,360
IN THE STUDIES THAT IS A

4414
03:03:36,360 --> 03:03:38,080
PRESUMPTION OF EXCLUSION ON

4415
03:03:38,080 --> 03:03:40,120
THOSE GROUNDS.

4416
03:03:40,120 --> 03:03:42,160
AND 65% OF THE STUDIES HAVE

4417
03:03:42,160 --> 03:03:43,800
INDIRECT EXCLUSION CRITERIA AND

4418
03:03:43,800 --> 03:03:45,880
AGAIN I WANTED TO HIGHLIGHT A

4419
03:03:45,880 --> 03:03:47,560
FEW IMPORTANT FACT HERE.

4420
03:03:47,560 --> 03:03:50,520
ONE IS THAT MEASUREMENTS OF

4421
03:03:50,520 --> 03:03:54,760
CAPACITY FOCUSED MOSTLY ON OR

4422
03:03:54,760 --> 03:04:01,320
ALMOST OVERWHELMING CONDITION,

4423
03:04:01,320 --> 03:04:04,160
IT'S HOW ADULTS DO BUT NOT WITH

4424
03:04:04,160 --> 03:04:07,800
THE BASELINE OF INTELLECTUAL

4425
03:04:07,800 --> 03:04:10,120
ABILITIES OR INTELLECTUAL

4426
03:04:10,120 --> 03:04:12,760
DISABILITY ANDS ALSO MEASUREMENT

4427
03:04:12,760 --> 03:04:13,720
OF CAPACITY.

4428
03:04:13,720 --> 03:04:15,760
THE CAPACITY TO CONSENT OR TO

4429
03:04:15,760 --> 03:04:19,040
READ LARGELY ARE MISSING, ONLY

4430
03:04:19,040 --> 03:04:20,840
FOUR OF THE 220 STUDIES FOR

4431
03:04:20,840 --> 03:04:23,680
ADULTS INCLUDE ASSESSMENT FOR

4432
03:04:23,680 --> 03:04:25,400
INDIVIDUAL CAPACITY TO CONSENT.

4433
03:04:25,400 --> 03:04:26,760
ANOTHER THING IS THAT THE

4434
03:04:26,760 --> 03:04:28,560
STUDIES THAT DID INCLUDE

4435
03:04:28,560 --> 03:04:31,080
MEASUREMENTS, WHICH FOCUSES ON

4436
03:04:31,080 --> 03:04:33,400
FUNCTIONSAL CAPACITY, FOCUS ON

4437
03:04:33,400 --> 03:04:34,360
CONDITIONS SPECIFIC CONDITIONS,

4438
03:04:34,360 --> 03:04:36,800
NOT TAKING INTO A COUNT THE

4439
03:04:36,800 --> 03:04:38,360
BASELINE OF WHERE THIS PERSON

4440
03:04:38,360 --> 03:04:40,720
STARTS AND WHERE THAT PERSON IS

4441
03:04:40,720 --> 03:04:41,880
AROUND THE PROCESS.

4442
03:04:41,880 --> 03:04:44,280
AND THEY FOCUSED ONLY INDIVIDUAL

4443
03:04:44,280 --> 03:04:45,840
ASSESSMENTS WITHOUT SUPPORT SO

4444
03:04:45,840 --> 03:04:47,600
ANYONE WHO NEEDED SUPPORT

4445
03:04:47,600 --> 03:04:49,960
ESSENTIALLY WAS NOT ASSESSED

4446
03:04:49,960 --> 03:04:51,480
ACCORDING TO A SUPPORTED SYSTEM

4447
03:04:51,480 --> 03:04:53,280
IN ANYWAY BUT IT WAS REALLY AN

4448
03:04:53,280 --> 03:04:55,400
INDIVIDUALIZED ASSESSMENT HERE.

4449
03:04:55,400 --> 03:04:57,320
AND THEN, THE OTHER THING TO

4450
03:04:57,320 --> 03:04:59,480
POINT OUT IS THE CATEGORIES OF

4451
03:04:59,480 --> 03:05:00,880
EXCLUSION, IT WILL LOOK AT THEM

4452
03:05:00,880 --> 03:05:03,520
OVER ALL, NEARLY 50% OF ALL THE

4453
03:05:03,520 --> 03:05:07,360
STUDIES THAT EXCLUDE ADULTS WITH

4454
03:05:07,360 --> 03:05:11,400
INTELLECTUAL DISABILITIES, ARE

4455
03:05:11,400 --> 03:05:15,600
BASED ON RESEARCH STAFF

4456
03:05:15,600 --> 03:05:17,800
DISCRETION AND IT WILL HAVE

4457
03:05:17,800 --> 03:05:20,760
DISCRETION IT IS VERY BIG AND

4458
03:05:20,760 --> 03:05:23,600
VERY CATCH-ALL CATEGORY WITHOUT

4459
03:05:23,600 --> 03:05:24,880
CLEAR EXPLANATION OR HOW

4460
03:05:24,880 --> 03:05:28,120
DECISIONS ARE TO BE MADE AND SO

4461
03:05:28,120 --> 03:05:29,640
THAT EP INCLUDES STATEMENTS OF

4462
03:05:29,640 --> 03:05:31,520
JUST THAT THE RESEARCH STUFF

4463
03:05:31,520 --> 03:05:33,600
DOES NOT THINK AND THAT IS ONE

4464
03:05:33,600 --> 03:05:37,240
CAN CONSENT OR THEY'RE MORE

4465
03:05:37,240 --> 03:05:39,880
ISSUES ABOUT, THAT THERE MIGHT

4466
03:05:39,880 --> 03:05:43,040
BE A HEALTH CONDITION THAN MIGHT

4467
03:05:43,040 --> 03:05:44,480
INTERACT BUT THERE'S NO CLEAR

4468
03:05:44,480 --> 03:05:47,640
EXPLANATION OF ASSESSMENT OF

4469
03:05:47,640 --> 03:05:49,200
REQUIREMENTS OF WHO IS ASSESSING

4470
03:05:49,200 --> 03:05:51,640
BY WHAT CRITERIA SO IT'S LIKELY

4471
03:05:51,640 --> 03:05:54,680
TO EMBED AND PURSUE INCAPACITIES

4472
03:05:54,680 --> 03:05:55,880
THAT SNEAK INTO THE DECISIONS

4473
03:05:55,880 --> 03:05:58,240
ABOUT WHO WILL BE INCLUDED OR

4474
03:05:58,240 --> 03:05:59,880
EXCLUDED IN THIS STUDY.

4475
03:05:59,880 --> 03:06:01,760
AND THEN FINALLY IT'S AN

4476
03:06:01,760 --> 03:06:03,640
IMPORTANT COMMENTS OR FINDINGS

4477
03:06:03,640 --> 03:06:05,720
IS THAT WE FOUND MULTIPLE I

4478
03:06:05,720 --> 03:06:07,920
GUESS CONCLUSION ARY CRITERIA

4479
03:06:07,920 --> 03:06:13,440
AND 70% OF THE DIRECT EXCLUSION

4480
03:06:13,440 --> 03:06:15,040
CRITERIA INLEWD INDIRECT

4481
03:06:15,040 --> 03:06:17,200
EXCLUSION CRITERIA AND 45% WAS

4482
03:06:17,200 --> 03:06:20,560
MORE THAN ONE DIRECTOR INDIRECT

4483
03:06:20,560 --> 03:06:21,960
EXCLUSIONARY CRITERIA SO IF WE

4484
03:06:21,960 --> 03:06:24,320
LOOK AT THE NUMBER OF INSTANCES

4485
03:06:24,320 --> 03:06:26,880
WHERE PEOPLE WITH INTELLECTUAL

4486
03:06:26,880 --> 03:06:28,200
DISABILITIES MIGHT BE INCLUDED

4487
03:06:28,200 --> 03:06:31,040
IN STUDIES, WE COME DOWN TO JUST

4488
03:06:31,040 --> 03:06:34,120
ABOUT 25% OF NIH FUNDED CLINICAL

4489
03:06:34,120 --> 03:06:35,520
STUDIES.

4490
03:06:35,520 --> 03:06:37,080
AGAIN, EVEN HERE, MOST OF THEM

4491
03:06:37,080 --> 03:06:39,440
WOULD BE IN THE CONTEXT OF

4492
03:06:39,440 --> 03:06:40,480
CANCER AND ONE OF THE THINGS

4493
03:06:40,480 --> 03:06:42,120
THAT I DID WANT TO POINT OUT,

4494
03:06:42,120 --> 03:06:43,320
THIS IS ANOTHER TABLE THAT KIND

4495
03:06:43,320 --> 03:06:46,280
OF SHOWS THAT THERE'S HIGHLY

4496
03:06:46,280 --> 03:06:47,480
LIKELY FROM DEVELOP RANT STUDIES

4497
03:06:47,480 --> 03:06:49,200
FOR ADULTS WITH INTELLECTUAL DIS

4498
03:06:49,200 --> 03:06:53,800
A LOTS, WE CAN SEE THAT CANCER,

4499
03:06:53,800 --> 03:06:56,280
THE LIKELY EXCLUSION IS VERY

4500
03:06:56,280 --> 03:06:58,640
HIGH IN STUDIES ABOUT CANCER,

4501
03:06:58,640 --> 03:07:01,040
CHRONIC CONDITIONS, INFECTIOUS

4502
03:07:01,040 --> 03:07:04,320
DISEASES AND SUBSTANCE USE.

4503
03:07:04,320 --> 03:07:06,000
ALL OF WHICH HAVE SIGNIFICANT

4504
03:07:06,000 --> 03:07:07,120
RELEVANCE FOR THIS POPULATION

4505
03:07:07,120 --> 03:07:09,240
AND WE KNOW FROM STUDIES THAT

4506
03:07:09,240 --> 03:07:10,520
COMPARED TO PEOPLE WITHOUT

4507
03:07:10,520 --> 03:07:11,920
INTELLECTUAL DISABILITIES,

4508
03:07:11,920 --> 03:07:14,320
PEOPLE WITH DISABILITIES ARE

4509
03:07:14,320 --> 03:07:15,720
THREE TO FOUR TIMES MORE LIKELY

4510
03:07:15,720 --> 03:07:17,280
TO EXPERIENCE, HAVE LATE

4511
03:07:17,280 --> 03:07:18,840
DIAGNOSIS AND DIE FROM THESE

4512
03:07:18,840 --> 03:07:20,000
CONDITIONS SOP GOING BACK TO THE

4513
03:07:20,000 --> 03:07:22,520
DEFINITION OF STRUCTURAL

4514
03:07:22,520 --> 03:07:24,920
ABLEISM, THIS EXCLUSION IS NOT

4515
03:07:24,920 --> 03:07:26,800
ONLY ONE ABOUT INCLUSION AND

4516
03:07:26,800 --> 03:07:28,960
WHETHER STUDY FINDINGS WILL BE

4517
03:07:28,960 --> 03:07:30,080
GENERALIZABLE, TO THE POPULATION

4518
03:07:30,080 --> 03:07:32,640
OF ADULTS WITH INTELLECTUAL

4519
03:07:32,640 --> 03:07:33,960
DISABILITIES BUT IT SENDS A

4520
03:07:33,960 --> 03:07:36,080
MESSAGE, EVEN IF UNINTENTIONALLY

4521
03:07:36,080 --> 03:07:38,480
THAT CURING AND TREATING THESE

4522
03:07:38,480 --> 03:07:40,200
CONDITIONS IT WILL ADULTS WITH I

4523
03:07:40,200 --> 03:07:41,160
AM ELECT ACTUAL DISABILITIES IS

4524
03:07:41,160 --> 03:07:42,520
NOT A PRIORITY.

4525
03:07:42,520 --> 03:07:45,600
PERHAPS BECAUSE THIS POPULATION

4526
03:07:45,600 --> 03:07:47,320
IS NOT WORTHY OF INVESTMENT.

4527
03:07:47,320 --> 03:07:49,120
THAT'S EXACTLY THE IDEA OF

4528
03:07:49,120 --> 03:07:51,160
STRUCTURAL ABLEISM OF THE

4529
03:07:51,160 --> 03:07:54,960
DELINEATE HOG  WHO IS IN WHO ARS

4530
03:07:54,960 --> 03:07:57,400
OUT ON THE BASIS OF CATEGORY AND

4531
03:07:57,400 --> 03:07:59,200
DECISIONS ABOUT THE NORMAL AND

4532
03:07:59,200 --> 03:08:01,800
THE AB NORM A WE'RE NOT ALONE IN

4533
03:08:01,800 --> 03:08:04,160
OUR STUDY LOOKING AT STUDIES IN

4534
03:08:04,160 --> 03:08:05,880
THE PAST 15 YEARS, WE CAN SEE ON

4535
03:08:05,880 --> 03:08:06,600
THIS SLIDE.

4536
03:08:06,600 --> 03:08:08,240
IMAGES OF FOUR OTHER STUDIES

4537
03:08:08,240 --> 03:08:11,280
THAT FOUND SIMILAR EXCLUSION OF

4538
03:08:11,280 --> 03:08:13,200
ADULTS WITH INTELLECTUAL

4539
03:08:13,200 --> 03:08:15,000
DISABILITIES OR PSYCHIATRIC

4540
03:08:15,000 --> 03:08:16,440
CONDITIONS FROM DIFFERENT

4541
03:08:16,440 --> 03:08:17,840
CLINICAL TRIALS INCLUDING TO

4542
03:08:17,840 --> 03:08:21,520
IMPROVE MEDICATIO MEDICINE ADHES

4543
03:08:21,520 --> 03:08:22,920
WELL AS A MORE RECENT STUDY IN

4544
03:08:22,920 --> 03:08:25,080
THE U.S. THAT FOUND SIMILAR

4545
03:08:25,080 --> 03:08:26,600
EXCLUSION FROM CLINICAL TRAILS

4546
03:08:26,600 --> 03:08:29,720
AS WE DID AND NOT ONLY FOR

4547
03:08:29,720 --> 03:08:31,120
PEOPLE WITH INTELLECTUAL

4548
03:08:31,120 --> 03:08:32,680
DISABILITIES BUT ALSO FOR PEOPLE

4549
03:08:32,680 --> 03:08:34,720
WITH DISABILITY MORE GENERAL.

4550
03:08:34,720 --> 03:08:37,120
SO MOVING TO PRECISION MEDICINE

4551
03:08:37,120 --> 03:08:38,200
RESEARCH, THIS IS A GROWING

4552
03:08:38,200 --> 03:08:41,840
AREA, A PROMISING ENDEAVOR IN

4553
03:08:41,840 --> 03:08:44,480
BIOMEDICAL RESEARCH AND LESS

4554
03:08:44,480 --> 03:08:45,680
RISKY FOR PRECIPITATION AND

4555
03:08:45,680 --> 03:08:47,200
WE'RE TRYING NEW DRUGS, WE'RE

4556
03:08:47,200 --> 03:08:49,120
TRYING NEW INTERVENTIONS AND

4557
03:08:49,120 --> 03:08:51,120
THERE'S ALWAYS CONCERN ABOUT

4558
03:08:51,120 --> 03:08:51,760
POTENTIAL HARM.

4559
03:08:51,760 --> 03:08:53,560
WITH PRECISION MEDICINE

4560
03:08:53,560 --> 03:08:56,840
RESEARCH, IT AIMS TO IDENTIFY

4561
03:08:56,840 --> 03:09:01,000
TRAILER AND HEALTH CONDITIONS IT

4562
03:09:01,000 --> 03:09:02,920
TAKES A HOLISTIC AND

4563
03:09:02,920 --> 03:09:05,040
PERSON-CENTERED APPROACH

4564
03:09:05,040 --> 03:09:06,400
INCLUDING INFORMATION ON

4565
03:09:06,400 --> 03:09:08,080
INDIVIDUALS, BIOLOGICAL AND

4566
03:09:08,080 --> 03:09:09,400
GENETIC, ENVIRONMENTAL AND

4567
03:09:09,400 --> 03:09:10,520
LIFESTYLE CHOICES WHICH I USE

4568
03:09:10,520 --> 03:09:13,040
HERE ON THE RIGHT SIDE OF THE

4569
03:09:13,040 --> 03:09:14,920
SLIDE ALSO AN IMAGE FROM THE ALL

4570
03:09:14,920 --> 03:09:16,360
OF US RESEARCH PROGRAM.

4571
03:09:16,360 --> 03:09:18,480
IT PROMISES TO REDUCE HEALTH

4572
03:09:18,480 --> 03:09:19,760
DISPARITIES WITH SOME FOCUS ON

4573
03:09:19,760 --> 03:09:21,520
THOSE EXACT CHRONIC CONDITIONS

4574
03:09:21,520 --> 03:09:26,480
THAT ARE DISPROPORTIONATELY

4575
03:09:26,480 --> 03:09:28,120
BURDENING UNDERSERVED AND UNDER

4576
03:09:28,120 --> 03:09:31,160
REPRESENTED POPULATION AND HAS A

4577
03:09:31,160 --> 03:09:32,960
STRONG COMPONENT OF COMMUNITY

4578
03:09:32,960 --> 03:09:34,960
ENGAGEMENT AS A PATHWAY OF

4579
03:09:34,960 --> 03:09:36,840
IMPROVING OF INVOLVEMENT OF

4580
03:09:36,840 --> 03:09:39,000
INCREASED REPRESENTATION AND

4581
03:09:39,000 --> 03:09:40,680
STUDIES AND IMPROVED HEALTH

4582
03:09:40,680 --> 03:09:42,320
OUTCOMES IN THE LONG-TERM.

4583
03:09:42,320 --> 03:09:43,880
NOW AGAIN, THE ALL OF US

4584
03:09:43,880 --> 03:09:45,320
RESEARCH PROGRAM IS THE NATIONAL

4585
03:09:45,320 --> 03:09:46,160
PRECISION MEDICINE RESEARCH

4586
03:09:46,160 --> 03:09:47,440
PROGRAM AND IT'S BEEN SUCCESSFUL

4587
03:09:47,440 --> 03:09:49,360
IN RECRUITING VICTIMS FROM

4588
03:09:49,360 --> 03:09:51,280
HISTORICALLY UNDER REPRESENTED

4589
03:09:51,280 --> 03:09:54,800
COMMUNITIES AND I KNOW CHARLES

4590
03:09:54,800 --> 03:09:55,920
WILL DISCUSS IT IN A FEW

4591
03:09:55,920 --> 03:09:56,360
MINUTES.

4592
03:09:56,360 --> 03:09:57,920
THERE ARE MANY PRECISION

4593
03:09:57,920 --> 03:09:58,960
MEDICINE STUDIES IN THE UNITED

4594
03:09:58,960 --> 03:10:01,120
STATES AND ALL OF THE LARGE

4595
03:10:01,120 --> 03:10:02,400
MEDICAL CENTERS IN THE COUNTRY

4596
03:10:02,400 --> 03:10:04,600
AND ELSEWHERE, AND THAT THE

4597
03:10:04,600 --> 03:10:05,760
PRACTICES AND PROCEDURES AND

4598
03:10:05,760 --> 03:10:09,000
APPROACHES IN THOSE LOW CALL

4599
03:10:09,000 --> 03:10:10,400
PRECISION MEDICINE PROGRAMS VARY

4600
03:10:10,400 --> 03:10:10,840
SIGNIFICANTLY.

4601
03:10:10,840 --> 03:10:12,160
WHAT DO WE KNOW ABOUT PEOPLE

4602
03:10:12,160 --> 03:10:14,640
WITH DISABILITIES IN PRECISION

4603
03:10:14,640 --> 03:10:15,960
MEDICINE RESEARCH?

4604
03:10:15,960 --> 03:10:18,120
IT WILL NOT BE SURPRISING AS A

4605
03:10:18,120 --> 03:10:20,400
FIRST THING, WE DON'T HAVE

4606
03:10:20,400 --> 03:10:21,440
COMPREHENSIVE DATA.

4607
03:10:21,440 --> 03:10:26,000
REALITY IS THAT IN MOST PRE

4608
03:10:26,000 --> 03:10:36,560
SESSION AND IN A NATIONAL SURVEY

4609
03:10:40,360 --> 03:10:42,160
THAT WE CONDUCTED ABOUT 1300

4610
03:10:42,160 --> 03:10:44,640
PARTICIPANTS WITH DIVERSE

4611
03:10:44,640 --> 03:10:47,880
ABILITIES, IN 2018, WE FOUND

4612
03:10:47,880 --> 03:10:49,440
HIGH INTEREST IN PARTICIPATION

4613
03:10:49,440 --> 03:10:52,240
ACROSS DISABILITY SUBGROUPS,

4614
03:10:52,240 --> 03:10:53,960
ESPECIALLY BLIND, LOW VISION

4615
03:10:53,960 --> 03:10:54,200
VICTIMS.

4616
03:10:54,200 --> 03:10:57,720
WE FIND THEY WERE VERY MUCH

4617
03:10:57,720 --> 03:10:59,480
INTERESTED IN PARTICIPATION AND

4618
03:10:59,480 --> 03:11:00,880
THEY THOUGHT THIS WOULD BE

4619
03:11:00,880 --> 03:11:01,760
VALUABLE AND THEY WERE WILLING

4620
03:11:01,760 --> 03:11:03,920
TO PROVIDE A RANGE OF DATA FOR

4621
03:11:03,920 --> 03:11:05,320
PRECISION MEDICINE RESEARCH AND

4622
03:11:05,320 --> 03:11:06,400
EXPRESS INTEREST IN RECEIVING

4623
03:11:06,400 --> 03:11:16,160
BACK A RANGE OF WE ALSO FOUND

4624
03:11:16,160 --> 03:11:19,560
BARRIERS FOR THEIR INCLUSION AND

4625
03:11:19,560 --> 03:11:23,040
CONCERNS THAT INDICATED THIS.

4626
03:11:23,040 --> 03:11:25,440
SO GOING INTO GOES CONCERNS,

4627
03:11:25,440 --> 03:11:27,160
THERE WERE TREMENDOUS CONCERNS

4628
03:11:27,160 --> 03:11:30,080
ABOUT ACCESS AND COMMUNICATION

4629
03:11:30,080 --> 03:11:30,680
BARRIERS.

4630
03:11:30,680 --> 03:11:32,560
THE KEY ONCE HERE IS YOU CAN SEE

4631
03:11:32,560 --> 03:11:35,760
ON THIS SLIDE, AND AGAIN,

4632
03:11:35,760 --> 03:11:37,400
SUMMARIZED AS WELL IS THAT

4633
03:11:37,400 --> 03:11:38,520
TRANSPORTATION COST IN

4634
03:11:38,520 --> 03:11:40,400
AVAILABILITY WERE SELECTED BY

4635
03:11:40,400 --> 03:11:44,280
MORE THAN 41 TO 53% FOR EXAMPLE

4636
03:11:44,280 --> 03:11:47,520
THAT'S MOST AND AGAIN WE HAD

4637
03:11:47,520 --> 03:11:49,680
ALMOST 1300 PARTICIPANTS.

4638
03:11:49,680 --> 03:11:51,440
INACCESSIBLE FACILITIES AND

4639
03:11:51,440 --> 03:11:54,040
EQUIPMENT WERE SELECTED BY 56%

4640
03:11:54,040 --> 03:11:58,680
OF OUR PARTICIPANTS AND

4641
03:11:58,680 --> 03:11:59,400
INACCESSIBLE INFORMATION WAS

4642
03:11:59,400 --> 03:12:01,240
SELECTED BY 43% OF OUR

4643
03:12:01,240 --> 03:12:04,520
PARTICIPANTS AND COMMUNICATION

4644
03:12:04,520 --> 03:12:05,920
WITH RESEARCH -- COMMUNICATION

4645
03:12:05,920 --> 03:12:08,640
WITH RESEARCHERS IS DIFFICULT

4646
03:12:08,640 --> 03:12:13,680
AND WORRIES THAT BY 44% OF OUR

4647
03:12:13,680 --> 03:12:15,440
PARTICIPANTS AND THESE FINDINGS

4648
03:12:15,440 --> 03:12:19,040
RESINATE WITH FINDINGS ON

4649
03:12:19,040 --> 03:12:20,080
CLINICAL SETTINGS AND OF COURSE,

4650
03:12:20,080 --> 03:12:22,320
WE SAY IT'S ONLY WONDERFUL WORK

4651
03:12:22,320 --> 03:12:25,040
AND SEMINAR WORK ON CLINICIANS

4652
03:12:25,040 --> 03:12:25,920
AND ATTITUDES TOWARDS PEOPLE

4653
03:12:25,920 --> 03:12:27,880
WITH DISABILITIES END INDICATING

4654
03:12:27,880 --> 03:12:29,960
THAT THE LIMITED KNOWLEDGE IS

4655
03:12:29,960 --> 03:12:34,640
DISABILITY ACCESSIBILITY AND

4656
03:12:34,640 --> 03:12:37,800
ACCOMMODATIONS PROVIDING THESE

4657
03:12:37,800 --> 03:12:39,080
PATIENTS WITH DISABILITIES AND

4658
03:12:39,080 --> 03:12:40,800
OF COURSE, MORE BIAS IS ABOUT

4659
03:12:40,800 --> 03:12:44,840
THE QUALITY OF LIFE AND SO

4660
03:12:44,840 --> 03:12:46,720
FOURTH.

4661
03:12:46,720 --> 03:12:49,360
WE FOUND HARM RELATED WORK AND

4662
03:12:49,360 --> 03:12:56,240
OUR PARTICIPANTS AND INCLUDE A

4663
03:12:56,240 --> 03:13:06,720
THIRD AND THAT IT MIGHT HARM

4664
03:13:11,240 --> 03:13:21,720
PEOPLE LIKE THAT AND RESEARCHERS

4665
03:13:23,440 --> 03:13:26,880
DO NOT KNOW THAT SO THESE

4666
03:13:26,880 --> 03:13:28,320
BARRIERS INDICATE DISTRUST,

4667
03:13:28,320 --> 03:13:30,000
SIGNIFICANT DISTRUST AND IT HAS

4668
03:13:30,000 --> 03:13:33,800
SHOWN IN STUDIES WITH

4669
03:13:33,800 --> 03:13:35,360
MARGINALIZED AND COMMUNITIES A

4670
03:13:35,360 --> 03:13:36,920
SITUATION THAT HAS NEGATIVE

4671
03:13:36,920 --> 03:13:38,840
IMPACTS ON HEALTH OUTCOMES AND

4672
03:13:38,840 --> 03:13:41,080
RESEARCH COLLABORATION AND

4673
03:13:41,080 --> 03:13:42,760
DISTRUST IS ASSOCIATED WITH

4674
03:13:42,760 --> 03:13:44,640
DISTRUST IN THE RESEARCH

4675
03:13:44,640 --> 03:13:46,080
FINDINGS AND THEIR

4676
03:13:46,080 --> 03:13:47,360
GENERALIZABILITY BECAUSE FOLKS

4677
03:13:47,360 --> 03:13:49,400
LIKE ME ARE NOT INCLUDED IN

4678
03:13:49,400 --> 03:13:50,920
BIOMEDICAL RESEARCH, HOW DO WE

4679
03:13:50,920 --> 03:13:52,720
KNOW THE FINDINGS ARE APPLICABLE

4680
03:13:52,720 --> 03:13:54,360
TO US AS WELL.

4681
03:13:54,360 --> 03:13:56,160
SO WITH THIS IN MIND, I'M

4682
03:13:56,160 --> 03:13:58,320
CURRENTLY LEADING ANOTHER

4683
03:13:58,320 --> 03:14:00,720
COMMUNITY BASED PARTICIPATORY

4684
03:14:00,720 --> 03:14:03,080
STUDY WITH LOW VISION ADULT,

4685
03:14:03,080 --> 03:14:04,240
DEAF AND HARD OF HEARING ADULTS

4686
03:14:04,240 --> 03:14:05,680
AND ADULTS OF WITH DISABILITY

4687
03:14:05,680 --> 03:14:09,160
AND WITH A GOAL OF IDENTIFYING

4688
03:14:09,160 --> 03:14:11,120
THE SOURCES OF DISTRUST IN

4689
03:14:11,120 --> 03:14:12,280
PRECISION MEDICINE RESEARCH AND

4690
03:14:12,280 --> 03:14:14,440
WHAT CAN BE DONE WITH MEDICINE

4691
03:14:14,440 --> 03:14:16,520
RESEARCH PROGRAMS TO BE TRUST

4692
03:14:16,520 --> 03:14:17,920
WORTHY AND THE PERSPECTIVE OF

4693
03:14:17,920 --> 03:14:20,200
PEOPLE WITH DISABILITIES.

4694
03:14:20,200 --> 03:14:22,240
SO FAR WE CONDUCTED 18 FOCUS

4695
03:14:22,240 --> 03:14:24,240
GROUPS AND THE NEXT FEW SLIDES

4696
03:14:24,240 --> 03:14:26,240
THAT I'LL BE SHARING ARE SOME OF

4697
03:14:26,240 --> 03:14:32,280
THE EXPERIENCES AND CONCERNS

4698
03:14:32,280 --> 03:14:34,160
THAT CAME OFF AND THIS IS A

4699
03:14:34,160 --> 03:14:38,520
STUDY OF FUNDED BY NIH OD OFFICE

4700
03:14:38,520 --> 03:14:41,080
OF DIRECTORS AND SO THE FIRST

4701
03:14:41,080 --> 03:14:43,000
THEME THAT CAME UP, VERY

4702
03:14:43,000 --> 03:14:45,440
STRONGLY ACROSS FOCUS GROUPS IS

4703
03:14:45,440 --> 03:14:47,120
THE CLINICAL SETTINGS AND WE

4704
03:14:47,120 --> 03:14:48,680
HEAR A LOT ABOUT THESE DIAGNOSIS

4705
03:14:48,680 --> 03:14:51,360
BEING OVERLOOKED AND DOWN UPON

4706
03:14:51,360 --> 03:14:54,880
AND DISRESPECTED AND TREATED THE

4707
03:14:54,880 --> 03:14:56,400
CLINICAL TEAMS AND THEIR STAFF,

4708
03:14:56,400 --> 03:15:00,760
ESPECIALLY WHEN THEY'RE MULTIPLE

4709
03:15:00,760 --> 03:15:01,720
MARGINALIZATIONS THAT IS WHEN

4710
03:15:01,720 --> 03:15:04,920
YOU HAVE BEING BLIND, AS WELL AS

4711
03:15:04,920 --> 03:15:06,920
BEING AFRICAN AMERICAN.

4712
03:15:06,920 --> 03:15:08,680
PARTICIPANTS EXPLAINED, THESE

4713
03:15:08,680 --> 03:15:10,600
EXPERIENCES INCLUDING CARE

4714
03:15:10,600 --> 03:15:12,280
SETTINGS, NEGATIVELY IMPACT

4715
03:15:12,280 --> 03:15:14,000
THEIR TRUST IN PRECISION

4716
03:15:14,000 --> 03:15:16,120
MEDICINE RESEARCH, EVEN THOUGH

4717
03:15:16,120 --> 03:15:19,280
THESE ARE SEPARATE SETTINGS,

4718
03:15:19,280 --> 03:15:20,160
BECAUSE TODAY'S PRECISION

4719
03:15:20,160 --> 03:15:21,760
MEDICINE RESEARCH IS TOMORROW'S

4720
03:15:21,760 --> 03:15:23,280
CLINICAL CARE.

4721
03:15:23,280 --> 03:15:24,480
AND THEIR NEGATIVE EXPERIENCES

4722
03:15:24,480 --> 03:15:27,480
IN CLINICAL SETTINGS ARE THE PRE

4723
03:15:27,480 --> 03:15:28,800
CURSERS ARE EXPERIENCES THEY

4724
03:15:28,800 --> 03:15:30,720
WILL LIKELY HAVE IN PRECISION

4725
03:15:30,720 --> 03:15:33,480
MEDICINE RESEARCH STUDIES AS

4726
03:15:33,480 --> 03:15:36,880
WELL.

4727
03:15:36,880 --> 03:15:41,160
AND SECOND THEME IS THE

4728
03:15:41,160 --> 03:15:41,840
CONNECTION BETWEEN

4729
03:15:41,840 --> 03:15:43,160
DISCRIMINATION AND

4730
03:15:43,160 --> 03:15:43,880
INACCESSIBILITY IN EACH AND

4731
03:15:43,880 --> 03:15:45,040
EVERY STEP OF THE PRECISION

4732
03:15:45,040 --> 03:15:47,200
MEDICINE RESEARCH CYCLE FROM THE

4733
03:15:47,200 --> 03:15:48,600
STUDY INFORMATION TO CONSENT

4734
03:15:48,600 --> 03:15:50,760
PROCESSES TO STUDY WEB SITES,

4735
03:15:50,760 --> 03:15:52,960
STUDY PROCEDURES, RETURN OF

4736
03:15:52,960 --> 03:15:57,080
RESULTS, AND OPTIONS.

4737
03:15:57,080 --> 03:16:07,560
AS PARTICIPANTS WHICH MAKES IT

4738
03:16:10,560 --> 03:16:11,840
HARDER FOR THEM TO PARTICIPATE.

4739
03:16:11,840 --> 03:16:13,840
IT'S THEM NOT BEING PROVIDED

4740
03:16:13,840 --> 03:16:16,040
ACCOMMODATIONS FOR THE STUDY

4741
03:16:16,040 --> 03:16:18,520
PROCEDURES.

4742
03:16:18,520 --> 03:16:22,200
THE IMAGE ON THE RIGHT OF THE

4743
03:16:22,200 --> 03:16:23,880
SLIDE IS AN PERPS THAT CAME UP

4744
03:16:23,880 --> 03:16:27,400
SEVERAL TIMES.

4745
03:16:27,400 --> 03:16:32,880
IT'S USED IN COLD AND INCLUDING

4746
03:16:32,880 --> 03:16:33,600
OPHTHALMOLOGIST OFFICE AND IT'S

4747
03:16:33,600 --> 03:16:35,280
UP WITH OF OUR BLACK AFRICAN

4748
03:16:35,280 --> 03:16:40,520
AMERICANS SHARES THE PEOPLE LOOK

4749
03:16:40,520 --> 03:16:44,360
AT YOU LIKE -- THEY INSIST I

4750
03:16:44,360 --> 03:16:47,880
NEED TO DO IT OR THEY EVEN ASK,

4751
03:16:47,880 --> 03:16:51,400
IS THERE SOMEONE OR SORRY,

4752
03:16:51,400 --> 03:16:54,920
THERE'S SOMEONE HAS AUDACITY TO

4753
03:16:54,920 --> 03:16:56,280
ASK YOU, WELL, DID YOU BRING

4754
03:16:56,280 --> 03:16:57,040
SOMEONE WITH YOU.

4755
03:16:57,040 --> 03:16:59,120
IT'S IMPOSED INCOMPETENCY THAT

4756
03:16:59,120 --> 03:17:00,760
ONLY RAISE FORCES THESE

4757
03:17:00,760 --> 03:17:09,520
PERCEPTIONS ABOUT INABILITIES.

4758
03:17:09,520 --> 03:17:11,800
IT'S ACCESS TO BENEFITS AND THE

4759
03:17:11,800 --> 03:17:13,080
PICTURE ON THIS SLIDE HIGHLIGHTS

4760
03:17:13,080 --> 03:17:14,880
A CONDITION FROM REA LOT OF

4761
03:17:14,880 --> 03:17:16,160
EXCLUSION TO INCLUSION IT

4762
03:17:16,160 --> 03:17:18,400
CONTAINS FIVE BOXES, WITH IMAGES

4763
03:17:18,400 --> 03:17:19,840
OF THREE PEOPLE TRYING TO BE

4764
03:17:19,840 --> 03:17:21,760
INCLUDED IN A PUBLIC SPACE WITH

4765
03:17:21,760 --> 03:17:23,640
THE BOX THIS TITLE FROM LEFT TO

4766
03:17:23,640 --> 03:17:25,880
RIGHT, REALITY, EQUALITY,

4767
03:17:25,880 --> 03:17:27,320
EQUITY, JUSTICE AND INCLUSION

4768
03:17:27,320 --> 03:17:37,840
AND SHOW HOW THESE SITUATIONS

4769
03:17:41,800 --> 03:17:44,120
TODAY AND IN THE FUTURE.

4770
03:17:44,120 --> 03:17:45,840
THEY LIE HEIGHT THE COST OF

4771
03:17:45,840 --> 03:17:47,400
CARE, HIGH POVERTY RATES AND

4772
03:17:47,400 --> 03:17:48,720
PEOPLE WITH DISABILITIES MORE

4773
03:17:48,720 --> 03:17:51,640
GENERALLY AND ESPECIALLY THOSE

4774
03:17:51,640 --> 03:17:54,440
OF MULTIPLE AND THEY TECH

4775
03:17:54,440 --> 03:17:55,680
DIVIDES THAT WILL PRECLUDE THEM

4776
03:17:55,680 --> 03:17:59,720
FROM ME JOINING THE BENEFITS AND

4777
03:17:59,720 --> 03:18:01,840
THEY WILL PAY MUCH HIGHER PRICES

4778
03:18:01,840 --> 03:18:06,360
AND CITED PEOPLE FOR ALL ASPECTS

4779
03:18:06,360 --> 03:18:13,480
OF PRECISE MEDICINE REOPEN AND

4780
03:18:13,480 --> 03:18:16,760
AND THEY NEED TO COVER THE COST

4781
03:18:16,760 --> 03:18:19,160
THAT WILL MAKE OTHERWISE

4782
03:18:19,160 --> 03:18:21,120
PUBLICLY AVAILABLE SERVICES

4783
03:18:21,120 --> 03:18:26,960
ACCESSIBLE TO THEM.

4784
03:18:26,960 --> 03:18:29,320
AND WHAT OUR PARTICIPANTS FEARED

4785
03:18:29,320 --> 03:18:30,200
IS THAT THEY WILL ALWAYS REMAIN

4786
03:18:30,200 --> 03:18:34,160
IN THE FIRST BOX ON THE LEFT OF

4787
03:18:34,160 --> 03:18:35,840
REALITY AND INEQUITY, INJUSTICE

4788
03:18:35,840 --> 03:18:37,840
AND EXCLUSION FROM ACCESSING THE

4789
03:18:37,840 --> 03:18:43,000
BENEFITS OF PRECISION MEDICINE

4790
03:18:43,000 --> 03:18:44,560
AND ANOTHER CONCERN WE HAVE, AND

4791
03:18:44,560 --> 03:18:46,440
RELATES TO THE BENEFITS OR HOW

4792
03:18:46,440 --> 03:18:49,920
WE DEFINE THE BENEFITS IS THE

4793
03:18:49,920 --> 03:18:51,720
QUESTION OF STRUCTURAL ABLEISM

4794
03:18:51,720 --> 03:18:53,120
IN GENOMICS RESEARCH MORE

4795
03:18:53,120 --> 03:19:03,120
GENERALLY AND OF COURSE, IT'S A

4796
03:19:03,120 --> 03:19:04,640
DECOMPONENT AND A VERY

4797
03:19:04,640 --> 03:19:05,760
FOUNDATIONAL STATEMENT BY JANE

4798
03:19:05,760 --> 03:19:08,400
WATSON THE PERSON WHO IDENTIFIED

4799
03:19:08,400 --> 03:19:12,080
HAS HAD A HUGE IMPACT ON THE

4800
03:19:12,080 --> 03:19:13,040
FIELDS, SEEING THE BRIGHT SIDE

4801
03:19:13,040 --> 03:19:15,040
OF BEING HANDICAPPED IS PRAISING

4802
03:19:15,040 --> 03:19:16,800
THE EXTREME POVERTY AND TO BE

4803
03:19:16,800 --> 03:19:18,400
SURE THERE ARE MANY INDIVIDUALS

4804
03:19:18,400 --> 03:19:24,000
WHO RISE OUT OF THE INHER

4805
03:19:24,000 --> 03:19:25,440
ENTERED AUTOMATIC THOUGH THERE'S

4806
03:19:25,440 --> 03:19:26,400
DIVERSITY WHETHER ONE WANTS

4807
03:19:26,400 --> 03:19:28,120
THEIR DISABILITIES TREATED OR

4808
03:19:28,120 --> 03:19:30,160
NOT, THIS RESEARCH MAY CLASS

4809
03:19:30,160 --> 03:19:31,760
WITH MANY PEOPLE WITH

4810
03:19:31,760 --> 03:19:34,160
DISABILITIES AND REFERENCES AND

4811
03:19:34,160 --> 03:19:42,720
THE ARTICLE ON THE RIGHT, THE

4812
03:19:42,720 --> 03:19:48,000
CLASS AND LOSTS AND ENSUING LOST

4813
03:19:48,000 --> 03:19:50,040
IN LASTING AND PEOPLE WITH

4814
03:19:50,040 --> 03:19:51,360
DISABILITIES AND AS A GROUP IN

4815
03:19:51,360 --> 03:19:56,360
LIFE OF THE GENOMIC RESEARCH AND

4816
03:19:56,360 --> 03:20:00,920
AGENDA AND AND IT'S RELEVANT

4817
03:20:00,920 --> 03:20:07,880
ACROSS AND THEY ARE IN OUR STUDY

4818
03:20:07,880 --> 03:20:18,560
AND WHETHER GENETIC RESEARCH HAS

4819
03:20:18,560 --> 03:20:20,640
YOU GENETICS AND THE IMPACTS ON

4820
03:20:20,640 --> 03:20:23,480
EXISTING PEOPLE WITH A

4821
03:20:23,480 --> 03:20:23,880
DISABILITY.

4822
03:20:23,880 --> 03:20:25,760
AND IT'S ONE OF OUR PARTICIPANTS

4823
03:20:25,760 --> 03:20:27,000
STATED AND I QUOTE, EVERYONE

4824
03:20:27,000 --> 03:20:29,280
WILL NEED TO ACHIEVE A RANDOM

4825
03:20:29,280 --> 03:20:31,920
IDEAL BODY TYPE OR A RANDOM

4826
03:20:31,920 --> 03:20:33,720
SKILL SET AS PART OF THE

4827
03:20:33,720 --> 03:20:34,080
CONCERNS.

4828
03:20:34,080 --> 03:20:35,720
AND FINAL ISSUE THAT I WANT TO

4829
03:20:35,720 --> 03:20:39,600
BRING UP IS DATA SHARING.

4830
03:20:39,600 --> 03:20:42,440
THIS IS A GROWING PRACTICE IN

4831
03:20:42,440 --> 03:20:43,480
PRECISION MEDICINE AND RESEARCH

4832
03:20:43,480 --> 03:20:45,680
AND OTHER HEALTH RESEARCH --

4833
03:20:45,680 --> 03:20:47,120
>>MAYA.

4834
03:20:47,120 --> 03:20:47,560
TWO MINUTES.

4835
03:20:47,560 --> 03:20:48,200
>>OKAY.

4836
03:20:48,200 --> 03:20:49,960
AT ITS CORE, DATA SHARING HAS

4837
03:20:49,960 --> 03:20:51,120
IMPORTANT GOALS INCLUDING THE

4838
03:20:51,120 --> 03:20:52,920
NEED TO HAVE LARGE DATASETS FOR

4839
03:20:52,920 --> 03:20:54,920
SCIENTIFIC FINDINGS TO EMERGE

4840
03:20:54,920 --> 03:20:57,280
AND MAXIMUM USE OF FEDERAL

4841
03:20:57,280 --> 03:20:59,280
FUNDING AND WE DID FIND SUPPORT

4842
03:20:59,280 --> 03:20:59,880
FOR THAT.

4843
03:20:59,880 --> 03:21:01,760
FOR DATA SHARING IN OUR SURVEY

4844
03:21:01,760 --> 03:21:04,360
BUT WHAT WE ASKED ABOUT WHO THEY

4845
03:21:04,360 --> 03:21:05,720
WOULD BE WILLING TO SHARE THEIR

4846
03:21:05,720 --> 03:21:08,920
DATA WITH, WHAT WE FOUND IS

4847
03:21:08,920 --> 03:21:10,600
SIGNIFICANT RELUCTANCE TO SHARE

4848
03:21:10,600 --> 03:21:11,880
THE DATA WITH THE DRUG COMPANIES

4849
03:21:11,880 --> 03:21:14,400
AND ESPECIALLY IN BLIND AND LOW

4850
03:21:14,400 --> 03:21:15,960
VISION INDIVIDUALS WHERE SHARING

4851
03:21:15,960 --> 03:21:17,840
DATA WITH UNIVERSITY RESEARCHERS

4852
03:21:17,840 --> 03:21:19,880
AND NIH RESEARCHERS WAS MUCH

4853
03:21:19,880 --> 03:21:21,080
HIGHER AND IN DISCUSSING THIS

4854
03:21:21,080 --> 03:21:22,880
ISSUE WITH THE COMMUNITY

4855
03:21:22,880 --> 03:21:25,720
MEMBERS, WHAT WE FOUND IS THAT

4856
03:21:25,720 --> 03:21:27,200
PART OF RELUCTANCE AND WE HAVE

4857
03:21:27,200 --> 03:21:29,040
TO DO WITH PHARMACEUTICAL

4858
03:21:29,040 --> 03:21:31,600
COMPANIES ARE NOT PROVIDING

4859
03:21:31,600 --> 03:21:33,480
ACCESSIBILITY TRAVEL LABELS AND

4860
03:21:33,480 --> 03:21:34,720
EFFECTIVELY CONTRIBUTING TO THE

4861
03:21:34,720 --> 03:21:36,520
WORSE HEALTH OUTCOME OF BLIND

4862
03:21:36,520 --> 03:21:38,400
AND LOW VISION INDIVIDUALS.

4863
03:21:38,400 --> 03:21:48,920
SO THERE ARE MANY OTHER THINGS

4864
03:21:50,400 --> 03:21:55,800
WE HAVE TO ALLOW DATA SHARING

4865
03:21:55,800 --> 03:21:56,760
WITH RESPONSIBILITY SHARING AND

4866
03:21:56,760 --> 03:21:58,240
REQUIREMENTS OF THOSE WHO USE

4867
03:21:58,240 --> 03:22:00,880
THE DATA, THE SECONDARY USERS TO

4868
03:22:00,880 --> 03:22:03,880
ENSURE THEIR DISCRIMINATORY

4869
03:22:03,880 --> 03:22:05,160
PRACTICES ARE COMING TO AN END

4870
03:22:05,160 --> 03:22:06,800
AND AGAIN, THAT THEY PLAY A ROLE

4871
03:22:06,800 --> 03:22:09,280
IN ENSURING HEALTH EQUITY.

4872
03:22:09,280 --> 03:22:11,520
AND THEN THAT'S MY LAST SLIDE.

4873
03:22:11,520 --> 03:22:15,640
SO WE HEARD A LOT OF ABOUT

4874
03:22:15,640 --> 03:22:17,920
DISTRUST AND CHALLENGES THAT IS

4875
03:22:17,920 --> 03:22:19,360
ACTUALLY FOCUSING ON INDIVIDUALS

4876
03:22:19,360 --> 03:22:21,080
RATHER ON THE SYSTEM AND I THINK

4877
03:22:21,080 --> 03:22:22,880
THAT AS WE MOVE ALONG, WE HAVE

4878
03:22:22,880 --> 03:22:25,040
TO START THINKING ABOUT JUST

4879
03:22:25,040 --> 03:22:26,800
WORTHINESS AND IT'S A CALLING OF

4880
03:22:26,800 --> 03:22:28,800
DISABILITY ETHICS, REQUIRING THE

4881
03:22:28,800 --> 03:22:30,040
RESEARCH PROGRAMS INCLUDING

4882
03:22:30,040 --> 03:22:31,680
PRECISION MEDICINE RESEARCH ARE

4883
03:22:31,680 --> 03:22:36,600
JUST WORTHY AS INDIVIDUALS TO

4884
03:22:36,600 --> 03:22:37,880
PARTICIPANTS TRUST SHOWING

4885
03:22:37,880 --> 03:22:38,960
ABILITY TO ENGAGE AND THE

4886
03:22:38,960 --> 03:22:40,520
ABILITY TO ACTUALLY SHOW CARE

4887
03:22:40,520 --> 03:22:44,040
AND GOOD INTENTIONS AND SHOW

4888
03:22:44,040 --> 03:22:47,160
INTEGRITY AND I PUT HERE SOME

4889
03:22:47,160 --> 03:22:48,560
SUGGESTIONS THIS IS A PART OF MY

4890
03:22:48,560 --> 03:22:51,160
CURRENT STUDY AND WE'RE STILL

4891
03:22:51,160 --> 03:22:52,800
STUDY IT IN GREATER DETAIL BUT

4892
03:22:52,800 --> 03:22:54,640
VERY BRIEFLY WE NEED TO FIRST OF

4893
03:22:54,640 --> 03:22:56,040
ALL HAVE CLEAR INTEREST AND

4894
03:22:56,040 --> 03:22:57,480
COMMITMENT TO INCLUDE PEOPLE

4895
03:22:57,480 --> 03:22:59,000
WITH DISABILITIES IN RESEARCH ON

4896
03:22:59,000 --> 03:23:00,800
AN EQUAL BASIS AND WE NEED TO

4897
03:23:00,800 --> 03:23:02,000
START REPORTING DATA AND WE HAVE

4898
03:23:02,000 --> 03:23:05,520
TO START FROM THE PRESUMPTION OF

4899
03:23:05,520 --> 03:23:06,640
COMPETENCY AND SURE THEY'RE

4900
03:23:06,640 --> 03:23:09,720
SUPPORTED PROCESSES SO WE DO NOT

4901
03:23:09,720 --> 03:23:10,600
CONFLATE BETWEEN COM PEN TEE AND

4902
03:23:10,600 --> 03:23:12,360
LACK OF SUPPORT BUT UNIVERSAL

4903
03:23:12,360 --> 03:23:13,600
DESIGN FROM THE GET-GO SO

4904
03:23:13,600 --> 03:23:14,520
EVERYONE CAN PARTICIPATE IN

4905
03:23:14,520 --> 03:23:15,840
THOSE STUDIES AND WE HAVE TO

4906
03:23:15,840 --> 03:23:20,560
ALSO INCREASE WORKFORCE

4907
03:23:20,560 --> 03:23:21,720
DIVERSITY SO THEY INCLUDE PEOPLE

4908
03:23:21,720 --> 03:23:24,000
WITH DISABILITIES AS LEADERS OF

4909
03:23:24,000 --> 03:23:26,920
STUDIES AND ENGAGE WITH

4910
03:23:26,920 --> 03:23:27,520
COMMUNITIES OF PEOPLE WITH

4911
03:23:27,520 --> 03:23:28,720
DISABILITIES TO HEAR THEIR VIEWS

4912
03:23:28,720 --> 03:23:30,480
AND IDENTIFY THE AREA OF

4913
03:23:30,480 --> 03:23:32,120
INTEREST AND SO FOURTH AND THEN

4914
03:23:32,120 --> 03:23:33,560
FINALLY WE HAVE TO CREATE

4915
03:23:33,560 --> 03:23:35,240
RESEARCH POLICIES AND

4916
03:23:35,240 --> 03:23:36,600
ACCOUNTABILITY MEASURES TO

4917
03:23:36,600 --> 03:23:38,840
ENSURE THAT WE DISABLE

4918
03:23:38,840 --> 03:23:40,000
STRUCTURAL ABLEISTS.

4919
03:23:40,000 --> 03:23:41,640
WITH THAT, I JUST WANT TO THANK

4920
03:23:41,640 --> 03:23:43,280
THE RESEARCH PARTICIPANTS IN OUR

4921
03:23:43,280 --> 03:23:44,520
STUDIES AND COMMUNITY PARTNERS

4922
03:23:44,520 --> 03:23:47,200
AND RESEARCH STAFF, AND

4923
03:23:47,200 --> 03:23:48,480
COLLABORATIONS ACROSS PROJECTS

4924
03:23:48,480 --> 03:23:50,520
ARE FUNDERS, MY HOME DEPARTMENTS

4925
03:23:50,520 --> 03:23:52,120
OF COLOMBIA AND ALL THE

4926
03:23:52,120 --> 03:23:53,120
INDIVIDUAL EXPERTS WHO HAVE

4927
03:23:53,120 --> 03:23:54,400
SHARED WITH ME THEIR IN SIGHT,

4928
03:23:54,400 --> 03:23:54,920
KNOWLEDGE AND TIME.

4929
03:23:54,920 --> 03:23:56,880
THANK YOU SO MUCH AND I'LL LOOK

4930
03:23:56,880 --> 03:23:58,160
FORWARD TO THE CONVERSATION.

4931
03:23:58,160 --> 03:24:00,960
>>THANK YOU SO MUCH,
MAYA.

4932
03:24:00,960 --> 03:24:05,880
WONDERFUL PRESENTATION.

4933
03:24:05,880 --> 03:24:08,760
TERRIFIC CONCEPT TO ADDRESS AND

4934
03:24:08,760 --> 03:24:09,360
LOOK AT.

4935
03:24:09,360 --> 03:24:11,160
I'M GOING TO GO AHEAD AND MOVE

4936
03:24:11,160 --> 03:24:12,440
FORWARD IN THE INTEREST OF TIME

4937
03:24:12,440 --> 03:24:16,440
TO OUR NEXT SPEAKER, CHARLES

4938
03:24:16,440 --> 03:24:16,960
DRUM.

4939
03:24:16,960 --> 03:24:19,320
THE DIRECTOR OF THE NATIONAL

4940
03:24:19,320 --> 03:24:21,680
CENTER ON RESEARCH, KNOWLEDGE,

4941
03:24:21,680 --> 03:24:23,080
TRANSLATION AND DISSEMINATION AT

4942
03:24:23,080 --> 03:24:24,640
THE AMERICAN ASSOCIATION ON

4943
03:24:24,640 --> 03:24:27,240
HEALTH AND DISABILITY AND WE'LL

4944
03:24:27,240 --> 03:24:31,880
TALK BEEN ALL OF THE ALL OF US

4945
03:24:31,880 --> 03:24:33,120
PROGRAM.

4946
03:24:33,120 --> 03:24:34,280
THANK YOU, CHARLES, WELCOME.

4947
03:24:34,280 --> 03:24:36,680
>>THANK YOU FOR THE
INVITATION

4948
03:24:36,680 --> 03:24:38,720
TO BE HERE AND THIS DYNAMIC AND

4949
03:24:38,720 --> 03:24:39,400
IMPORTANT CONFERENCE OVER THE

4950
03:24:39,400 --> 03:24:40,520
LAST TWO DAYS.

4951
03:24:40,520 --> 03:24:41,640
MY NAME IS CHARLES.

4952
03:24:41,640 --> 03:24:44,880
I'M AN AGING, WHITE MALE WITH

4953
03:24:44,880 --> 03:24:46,560
GRAYING HAIR ALTHOUGH I STILL

4954
03:24:46,560 --> 03:24:47,960
HAVE RETAINED SOME OF THE RED.

4955
03:24:47,960 --> 03:24:50,720
I'M IN A BLUE SHIRT WITH A

4956
03:24:50,720 --> 03:24:51,440
BLURRED BACKGROUND.

4957
03:24:51,440 --> 03:24:57,120
MY PRONOUNS ARE HE/HIM/HISS AND

4958
03:24:57,120 --> 03:25:01,680
I HAVE A NON ADVISABLE VISIBLE .

4959
03:25:01,680 --> 03:25:03,200
I'LL TALK ABOUT A FEW THINGS OF

4960
03:25:03,200 --> 03:25:04,760
THE ALL OF US RESEARCH PROGRAM

4961
03:25:04,760 --> 03:25:06,280
THAT MAYA INTRODUCED.

4962
03:25:06,280 --> 03:25:08,400
I'M GOING TO DO A BRIEF OVERVIEW

4963
03:25:08,400 --> 03:25:09,080
OF THE PROGRAM.

4964
03:25:09,080 --> 03:25:12,280
I'M GOING TO TALK ABOUT SOME OF

4965
03:25:12,280 --> 03:25:14,200
INNOVATIVE ASPECTS OF THE

4966
03:25:14,200 --> 03:25:16,040
PROGRAM, ACCESSIBILITY EXAMPLES,

4967
03:25:16,040 --> 03:25:18,520
AREAS NEEDING IMPROVEMENT AND

4968
03:25:18,520 --> 03:25:20,120
NEW OPPORTUNITIES FOR IN

4969
03:25:20,120 --> 03:25:22,520
CONCLUSION INTO THE PROGRAM.

4970
03:25:22,520 --> 03:25:24,880
LIKE MAYA, I WILL START WITH A

4971
03:25:24,880 --> 03:25:25,280
DISCLAIMER.

4972
03:25:25,280 --> 03:25:27,200
BEFORE I DO THAT, I WANT TO GIVE

4973
03:25:27,200 --> 03:25:28,360
PARTICULAR THANKS TO MY

4974
03:25:28,360 --> 03:25:30,120
COLLEAGUE, Dr. JACOB DITCH,

4975
03:25:30,120 --> 03:25:33,560
FOR HIS REVIEW AND ASSISTANCE IN

4976
03:25:33,560 --> 03:25:35,920
COMMENTS ON THIS POWERPOINT

4977
03:25:35,920 --> 03:25:36,600
PRESENTATION.

4978
03:25:36,600 --> 03:25:40,080
NEXT SLIDE, PLEASE.

4979
03:25:40,080 --> 03:25:43,800
SO, IN DEED, HHD IS FUNDED BY

4980
03:25:43,800 --> 03:25:45,080
THE NIH ALL OF US RESEARCH

4981
03:25:45,080 --> 03:25:46,720
PROGRAM AND I'M THE PRINCIPLE

4982
03:25:46,720 --> 03:25:47,920
INVESTIGATOR AND DIRECTOR OF

4983
03:25:47,920 --> 03:25:49,400
THAT PROJECT AND THE DISABILITY

4984
03:25:49,400 --> 03:25:51,360
COMMUNITY ENGAGEMENT PARTNER

4985
03:25:51,360 --> 03:25:52,040
PROJECT.

4986
03:25:52,040 --> 03:25:55,120
WHICH IS CONDUCTING OUTREACH AND

4987
03:25:55,120 --> 03:25:57,480
ENGAGEMENT WITH THE DISABILITY

4988
03:25:57,480 --> 03:26:00,560
COMMUNITY ADULTS, TO ENCOURAGE

4989
03:26:00,560 --> 03:26:03,680
THEM TO PARTICIPATE IN THE

4990
03:26:03,680 --> 03:26:04,480
PROGRAM.

4991
03:26:04,480 --> 03:26:07,120
THE OPINIONS EXPRESSED IN THIS

4992
03:26:07,120 --> 03:26:09,040
REPRESENTATION ARE HOWEVER MY

4993
03:26:09,040 --> 03:26:11,600
OWN AND DO NOT REFLECT THE

4994
03:26:11,600 --> 03:26:14,360
POSITIONS OF AHD OR NIH'S ALL OF

4995
03:26:14,360 --> 03:26:16,160
US RESEARCH PROGRAM.

4996
03:26:16,160 --> 03:26:17,520
FOR THOSE OF YOU FAMILIAR WITH

4997
03:26:17,520 --> 03:26:22,000
MY WORK, YOU MAY KNOW THAT I DO

4998
03:26:22,000 --> 03:26:23,840
HAVE SOMETIMES, A DIPLOMATIC

4999
03:26:23,840 --> 03:26:25,920
APPROACH TO CRITICISM AND I WILL

5000
03:26:25,920 --> 03:26:28,160
BE CRITICIZING THE PROGRAM IN

5001
03:26:28,160 --> 03:26:28,760
SOME WAYS.

5002
03:26:28,760 --> 03:26:31,480
NEXT SLIDE, PLEASE.

5003
03:26:31,480 --> 03:26:33,960
SO, WHAT IS THE ALL OF US

5004
03:26:33,960 --> 03:26:34,960
RESEARCH PROGRAM.

5005
03:26:34,960 --> 03:26:38,640
IT'S A MASSIVE, HISTORIC,

5006
03:26:38,640 --> 03:26:39,960
LONGITUDINAL EFFORT TO GATHER

5007
03:26:39,960 --> 03:26:43,640
DATA FROM MORE THAN ONE MILLION

5008
03:26:43,640 --> 03:26:44,960
PEOPLE LIVING IN THE UNITED

5009
03:26:44,960 --> 03:26:46,880
STATES TO ACCELERATE RESEARCH

5010
03:26:46,880 --> 03:26:49,960
AND IMPROVE HEALTH.

5011
03:26:49,960 --> 03:26:51,240
BY CONSIDERING INDIVIDUAL

5012
03:26:51,240 --> 03:26:53,720
DIFFERENCES, AND LIFESTYLES,

5013
03:26:53,720 --> 03:26:55,720
SOCIOECONOMICS AND ENVIRONMENT,

5014
03:26:55,720 --> 03:26:58,880
BIOLOGY, AND OTHER FACTORS, THE

5015
03:26:58,880 --> 03:27:02,720
PROGRAM EXPECTS THAT RESEARCHERS

5016
03:27:02,720 --> 03:27:04,120
WILL UNCOVER PATHS TOWARDS

5017
03:27:04,120 --> 03:27:09,320
DELIVERING PERSONALIZED,

5018
03:27:09,320 --> 03:27:10,080
INDIVIDUALIZED, MEDICINE AND

5019
03:27:10,080 --> 03:27:11,280
HEALTHCARE AND ACHIEVING HEALTH

5020
03:27:11,280 --> 03:27:11,880
EQUITY.

5021
03:27:11,880 --> 03:27:16,440
THESE ARE LOT ABLE GOALS FOR THE

5022
03:27:16,440 --> 03:27:20,840
PROGRAM.

5023
03:27:20,840 --> 03:27:24,840
SO, IT'S A GUY NORM US

5024
03:27:24,840 --> 03:27:27,600
LONGITUDINAL OBSERVATIONAL

5025
03:27:27,600 --> 03:27:31,120
COHORT DATABASE CREATION.

5026
03:27:31,120 --> 03:27:32,360
ONE OF THE THINGS THAT I THINK

5027
03:27:32,360 --> 03:27:34,720
IS REALLY INNOVATIVE ABOUT THE

5028
03:27:34,720 --> 03:27:36,640
PROJECT IS THAT THEY'RE REALLY

5029
03:27:36,640 --> 03:27:41,880
WORK TO GO ACHIEVE DIVERSITY AND

5030
03:27:41,880 --> 03:27:43,680
SCALE.

5031
03:27:43,680 --> 03:27:46,080
THEY'RE FOCUSING ON

5032
03:27:46,080 --> 03:27:48,320
DEMOGRAPHICALLY, GEOGRAPHICALLY,

5033
03:27:48,320 --> 03:27:51,280
DIVERSITY, AND INCLUDING PERSONS

5034
03:27:51,280 --> 03:27:53,240
THAT THEY DESCRIBE IS UNDER

5035
03:27:53,240 --> 03:27:55,320
REPRESENTED IN BIOMEDICAL

5036
03:27:55,320 --> 03:27:57,200
RESEARCH, UBR.

5037
03:27:57,200 --> 03:28:00,720
RACE, ETHNICITY, GENDER, AGE,

5038
03:28:00,720 --> 03:28:03,400
SEXUAL ORIENTATION, RURAL

5039
03:28:03,400 --> 03:28:05,840
STATUS, SOCIOECONOMICS, AND

5040
03:28:05,840 --> 03:28:08,080
IMPORTANTLY FOR OUR WORD,

5041
03:28:08,080 --> 03:28:08,440
DISABILITY.

5042
03:28:08,440 --> 03:28:12,720
TO DATE, THEY HAVE OVER 600,000

5043
03:28:12,720 --> 03:28:14,760
PARTICIPANTS, 80% OF THE

5044
03:28:14,760 --> 03:28:17,640
PARTICIPANTS FALL INTO THE UBR

5045
03:28:17,640 --> 03:28:19,320
CATEGORY.

5046
03:28:19,320 --> 03:28:20,920
15% OF THE PARTICIPANTS ARE

5047
03:28:20,920 --> 03:28:23,560
PEOPLE WITH DISABILITIES AND AS

5048
03:28:23,560 --> 03:28:25,800
WE HAVE WORKED ON THIS PROJECT

5049
03:28:25,800 --> 03:28:28,160
NOW FOR A YEAR AND THREE

5050
03:28:28,160 --> 03:28:30,640
QUARTERS, WE'RE REALLY TRYING TO

5051
03:28:30,640 --> 03:28:31,720
INCREASE THE PREPORTION OF

5052
03:28:31,720 --> 03:28:34,200
PEOPLE WITH DISABILITIES THAT

5053
03:28:34,200 --> 03:28:35,160
ARE PARTICIPANTS.

5054
03:28:35,160 --> 03:28:37,160
IT'S A HUGE DIVERSE RANGE OF

5055
03:28:37,160 --> 03:28:38,880
DATA THAT IS AVAILABLE.

5056
03:28:38,880 --> 03:28:41,000
THEY HAVE A NUMBER OF SOCIAL

5057
03:28:41,000 --> 03:28:43,120
SCIENCE SURVEYS AND AS A SOCIAL

5058
03:28:43,120 --> 03:28:44,720
SCIENTIST, I RESINATE TOWARDS

5059
03:28:44,720 --> 03:28:45,200
THAT.

5060
03:28:45,200 --> 03:28:47,280
IT INCLUDES SURVEYS ON

5061
03:28:47,280 --> 03:28:49,320
LIFESTYLES, OVER ALL HEALTH,

5062
03:28:49,320 --> 03:28:51,480
HEALTHCARE ACCESS AND

5063
03:28:51,480 --> 03:28:52,920
UTILIZATION, PERSONALIZED

5064
03:28:52,920 --> 03:28:59,000
MEDICAL HISTORY, FAMILY HEALTH

5065
03:28:59,000 --> 03:29:00,080
HISTORY, TWO DIFFERENT COVID

5066
03:29:00,080 --> 03:29:03,800
FOCUSED SURVEYS, SOCIAL

5067
03:29:03,800 --> 03:29:06,400
DETERMINANTS OF HEALTH AND THEY

5068
03:29:06,400 --> 03:29:07,800
TAKE PHYSICAL MEASUREMENTS AND

5069
03:29:07,800 --> 03:29:10,840
THEY PROVIDE WEARABLES TO SOME

5070
03:29:10,840 --> 03:29:14,120
FOLKS AND YOU CAN SIGN UP TO

5071
03:29:14,120 --> 03:29:15,040
PROVIDE SAMPLES.

5072
03:29:15,040 --> 03:29:18,120
IT'S THE LARGEST GENETIC DATASET

5073
03:29:18,120 --> 03:29:22,160
IN THE ENTIRE WORLD WITH OVER

5074
03:29:22,160 --> 03:29:23,280
450,000 PEOPLE THAT HAVE

5075
03:29:23,280 --> 03:29:26,920
PROVIDED BIO SAMPLES FOR GENETIC

5076
03:29:26,920 --> 03:29:27,360
ANALYSIS.

5077
03:29:27,360 --> 03:29:28,840
AND THEY'RE EXPANDING.

5078
03:29:28,840 --> 03:29:35,320
THEY'RE LOOKING FOR NEW SURVEYS

5079
03:29:35,320 --> 03:29:39,760
AND THEY RESURVEY PARTICIPANTS

5080
03:29:39,760 --> 03:29:42,080
WHO HAD NOT HAD AN OPPORTUNITY

5081
03:29:42,080 --> 03:29:42,720
TO COMPLETE TOES SURVEYS.

5082
03:29:42,720 --> 03:29:47,040
NEXT SLIDE, PLEASE.

5083
03:29:47,040 --> 03:29:48,560
THE GOAL IS TO HAVE THIS GUY

5084
03:29:48,560 --> 03:29:52,240
NORM US DATABASE RESEARCHER WORK

5085
03:29:52,240 --> 03:29:53,800
BENCH, THAT IS A NATIONAL

5086
03:29:53,800 --> 03:30:04,120
RESOURCE FOR ALL.

5087
03:30:12,560 --> 03:30:14,360
THEY HAVE TALKED ABOUT CITIZENRY

5088
03:30:14,360 --> 03:30:15,800
SEARCHERS AND A DASHBOARD THAT

5089
03:30:15,800 --> 03:30:18,080
THEY HAVE CREATED AND ARE

5090
03:30:18,080 --> 03:30:19,840
CONSISTENTLY UPDATING.

5091
03:30:19,840 --> 03:30:21,360
THERE'S A LOT OF PARTICIPANT

5092
03:30:21,360 --> 03:30:22,000
CHOICE.

5093
03:30:22,000 --> 03:30:24,360
YOU CAN TAKE ONE SURVEY OR ALL.

5094
03:30:24,360 --> 03:30:26,360
YOU CAN TAKE PROVIDE ELECTRONIC

5095
03:30:26,360 --> 03:30:27,440
HEALTH RECORDS OR NONE.

5096
03:30:27,440 --> 03:30:30,520
YOU CAN PROVIDE BIO SAMPLES OR

5097
03:30:30,520 --> 03:30:31,600
NOT AT ALL.

5098
03:30:31,600 --> 03:30:33,600
YOU CAN CHOSE TO GET THE DATA

5099
03:30:33,600 --> 03:30:34,800
INFORMATION BACK TO YOU OR YOU

5100
03:30:34,800 --> 03:30:36,200
CAN AVOID THAT.

5101
03:30:36,200 --> 03:30:39,400
IF IF YOU PROVIDE BIO SAMPLES

5102
03:30:39,400 --> 03:30:41,320
AND THERE ARE CONCERNING

5103
03:30:41,320 --> 03:30:43,440
RESULTS, THEY HAVE A GENETIC

5104
03:30:43,440 --> 03:30:45,200
COUNSELING PROGRAM WHERE THEY

5105
03:30:45,200 --> 03:30:47,680
CAN COUNCIL PARTICIPANTS.

5106
03:30:47,680 --> 03:30:49,440
THEY REALLY DO FOCUS ON

5107
03:30:49,440 --> 03:30:50,760
PARTICIPANTS AS PARTNERS,

5108
03:30:50,760 --> 03:30:55,280
THEY'RE INCLUDED IN THE

5109
03:30:55,280 --> 03:30:57,520
GOVERNANCE, PARTICIPATORY ACTION

5110
03:30:57,520 --> 03:30:58,960
RESEARCH OR COMMUNITY BASED

5111
03:30:58,960 --> 03:31:00,760
RESEARCH IS ENCOURAGED AND

5112
03:31:00,760 --> 03:31:02,760
THERE'S MECHANISMS FOR

5113
03:31:02,760 --> 03:31:04,000
PARTICIPANTS TO IDENTIFY OF

5114
03:31:04,000 --> 03:31:05,400
AREAS WHERE THERE SHOULD BE

5115
03:31:05,400 --> 03:31:11,920
RESEARCH STUDIES GOING ON.

5116
03:31:11,920 --> 03:31:13,480
THEY A WORKGROUP AND THE

5117
03:31:13,480 --> 03:31:19,840
CERTAINLY IMPLICATIMPLICATIONS.

5118
03:31:19,840 --> 03:31:22,000
THIS IS TAKING ON THESE TOUGH

5119
03:31:22,000 --> 03:31:27,840
QUESTIONS MADE UP OF GRANTEES,

5120
03:31:27,840 --> 03:31:29,280
AWARDEES TO EXAMINE THESE ISSUES

5121
03:31:29,280 --> 03:31:30,320
FOR THE PROGRAM.

5122
03:31:30,320 --> 03:31:35,120
NEXT SLIDE, PLEASE.

5123
03:31:35,120 --> 03:31:36,800
SO, HERE IS SOME OF THE REASONS

5124
03:31:36,800 --> 03:31:40,280
FROM A DISABILITY PERSPECTIVE

5125
03:31:40,280 --> 03:31:44,480
THAT I ENDORSE THE ALL OF US

5126
03:31:44,480 --> 03:31:45,560
RESEARCH PROGRAM.

5127
03:31:45,560 --> 03:31:47,840
IT'S THE PERSONALIZED MEDICINE

5128
03:31:47,840 --> 03:31:51,400
INDIVIDUALIZED HEALTHCARE FIRST

5129
03:31:51,400 --> 03:31:57,800
AND FOR MOST AS  CONFERENCE HAS

5130
03:31:57,800 --> 03:31:58,560
DEMONSTRATED, MEDICAL CARE IF

5131
03:31:58,560 --> 03:32:01,240
YOU HAVE A DISABILITY IS NOT

5132
03:32:01,240 --> 03:32:01,600
SUFFICIENT.

5133
03:32:01,600 --> 03:32:04,120
THEY ALSO HAVE A GOAL OF

5134
03:32:04,120 --> 03:32:06,840
FOCUSING ON HEALTH EQUITY AND

5135
03:32:06,840 --> 03:32:09,080
THIS RESINATES TO ME AS A

5136
03:32:09,080 --> 03:32:10,760
DISABILITY RESEARCHER.

5137
03:32:10,760 --> 03:32:13,120
THEY HAVE A UNIQUE COMBINATION

5138
03:32:13,120 --> 03:32:16,520
OF DATA AND I'VE WORKED WITH THE

5139
03:32:16,520 --> 03:32:17,840
BEHAVIORAL RISK FACTOR

5140
03:32:17,840 --> 03:32:21,360
SURVEILLANCE SYSTEM, MATS AND

5141
03:32:21,360 --> 03:32:23,280
NHIS AND OTHER SECONDARY DATA

5142
03:32:23,280 --> 03:32:25,360
SOURCES.

5143
03:32:25,360 --> 03:32:27,000
HERE YOU HAVE GENETIC DATA,

5144
03:32:27,000 --> 03:32:29,480
CLINICAL DATA AND SOCIAL SCIENCE

5145
03:32:29,480 --> 03:32:30,760
SURVEYS ALL BROUGHT TOGETHER.

5146
03:32:30,760 --> 03:32:33,000
THEY USE THE DISABILITY

5147
03:32:33,000 --> 03:32:34,240
IDENTIFIERS THAT ARE CONTAINED

5148
03:32:34,240 --> 03:32:36,040
IN THE AMERICAN COMMUNITY SURVEY

5149
03:32:36,040 --> 03:32:38,360
AND SO IT DOES ALLOW COMPARISONS

5150
03:32:38,360 --> 03:32:42,000
WITH POPULATION BASED SURVEYS.

5151
03:32:42,000 --> 03:32:44,600
THE PROGRAM MADE THE CHOICE TO

5152
03:32:44,600 --> 03:32:54,040
FUND A NUMBER OF NATIONAL AND

5153
03:32:54,040 --> 03:32:55,440
ENGAGEMENT PARTNERS TO PROVIDE

5154
03:32:55,440 --> 03:32:57,800
THAT PERSPECTIVE BOTH IN TERMS

5155
03:32:57,800 --> 03:33:00,640
OF RECRUITMENT AND ENGAGEMENT

5156
03:33:00,640 --> 03:33:03,760
AND ALSO WITH THE OPERATIONS OF

5157
03:33:03,760 --> 03:33:07,600
THE PROGRAMS ITSELF AND AS A

5158
03:33:07,600 --> 03:33:09,120
RESEARCHER ADVOCATE, THEY DO

5159
03:33:09,120 --> 03:33:19,360
HEAR FROM US.

5160
03:33:19,720 --> 03:33:22,520
WE BRING THE VOICE OF MANY

5161
03:33:22,520 --> 03:33:23,200
DIFFERENT DISABILITY GROUPS INTO

5162
03:33:23,200 --> 03:33:23,840
OUR WORKS.

5163
03:33:23,840 --> 03:33:26,440
SO WE HAVE 25 NATIONAL AND LOCAL

5164
03:33:26,440 --> 03:33:27,280
DISABILITIES ORGANIZATIONS THAT

5165
03:33:27,280 --> 03:33:29,920
ARE PART OF THAT CONSORTIUM.

5166
03:33:29,920 --> 03:33:35,080
THEY INCLUDE ORGANIZATIONS LIKE

5167
03:33:35,080 --> 03:33:37,840
NICKEL AND APRIL AND AUCD AND

5168
03:33:37,840 --> 03:33:39,640
CFP AND THE SPINA BIFIDA

5169
03:33:39,640 --> 03:33:41,880
ASSOCIATION AND MANY OTHERS.

5170
03:33:41,880 --> 03:33:44,800
INCLUDING LOCAL CENTERS FOR

5171
03:33:44,800 --> 03:33:45,520
INDEPENDENT LIVING.

5172
03:33:45,520 --> 03:33:47,080
PART OF WHAT WE DID IN THE FIRST

5173
03:33:47,080 --> 03:33:48,680
YEAR OF THE PROJECT IS WE

5174
03:33:48,680 --> 03:33:50,600
CREATED AN ENDORSEMENT AND

5175
03:33:50,600 --> 03:33:52,520
INCLUSION STATEMENT THAT WAS

5176
03:33:52,520 --> 03:33:55,480
ADOPTED BY OUR FULL DISABILITY

5177
03:33:55,480 --> 03:33:56,120
CONSORTIUM.

5178
03:33:56,120 --> 03:33:59,280
THIS IS AN APPROVED

5179
03:33:59,280 --> 03:34:00,680
COMMUNICATION ASSET BY NIH

5180
03:34:00,680 --> 03:34:03,320
COMMUNICATION OFFICE AND IRB.

5181
03:34:03,320 --> 03:34:05,200
THEY LET US CRITICIZE THE

5182
03:34:05,200 --> 03:34:07,360
PROGRAM IN THIS STATEMENT, LET

5183
03:34:07,360 --> 03:34:13,160
ME BE CLEAR, WE LET THE WORK

5184
03:34:13,160 --> 03:34:14,920
THEY'VE DONE TO MAKE THE PROGRAM

5185
03:34:14,920 --> 03:34:16,600
ACCESSIBLE BUT WE ALSO POINT OUT

5186
03:34:16,600 --> 03:34:23,760
THAT THEY NEED TO ADOPT MAKE

5187
03:34:23,760 --> 03:34:25,440
SURE THE RESEARCH INCLUDES ALL

5188
03:34:25,440 --> 03:34:27,320
PEOPLE WITH DISABILITIES

5189
03:34:27,320 --> 03:34:28,640
INCLUDING PEOPLE WHO CANNOT

5190
03:34:28,640 --> 03:34:29,600
CONSENT ON THEIR OWN.

5191
03:34:29,600 --> 03:34:36,640
NEXT SLIDE, PLEASE.

5192
03:34:36,640 --> 03:34:41,360
HERE IS THE ACCESSIBLE AND IT'S

5193
03:34:41,360 --> 03:34:47,520
DONE AND THEY ARE 508 ACCESSIBLE

5194
03:34:47,520 --> 03:34:49,560
AND THEY FOCUS ON MEETING A

5195
03:34:49,560 --> 03:34:52,040
SIXTH GRADE READING LEVEL OR

5196
03:34:52,040 --> 03:34:52,960
LOWER.

5197
03:34:52,960 --> 03:34:55,480
SO SOME BUT NOT ALL OF THE

5198
03:34:55,480 --> 03:34:57,640
RECRUITMENT MATERIALS INCLUDE

5199
03:34:57,640 --> 03:34:59,440
DISABILITY IMAGES.

5200
03:34:59,440 --> 03:35:00,840
SOME OF THE RECRUITMENT

5201
03:35:00,840 --> 03:35:03,240
MATERIALS INCLUDE SPECIFIC

5202
03:35:03,240 --> 03:35:04,400
TESTIMONY ALS FROM PEOPLE WITH

5203
03:35:04,400 --> 03:35:06,280
DISABILITIES AS TO WHY THEY

5204
03:35:06,280 --> 03:35:08,760
SIGNED UP TO BE PARTICIPANTS.

5205
03:35:08,760 --> 03:35:10,680
THE ALL OF US LANDING PAGE

5206
03:35:10,680 --> 03:35:12,240
INCLUDES PHONE, E-MAIL AND

5207
03:35:12,240 --> 03:35:15,920
ON-LINE CHAT OPTIONS, FROM THAT

5208
03:35:15,920 --> 03:35:18,120
MAIN WEB PAGE FROM 7:00 A.M. TO

5209
03:35:18,120 --> 03:35:20,280
10:00 P.M. EASTERN STANDARD

5210
03:35:20,280 --> 03:35:20,680
TIME.

5211
03:35:20,680 --> 03:35:24,840
THE ALL OF US LAPPI LANDING HAS

5212
03:35:24,840 --> 03:35:27,480
TOLL-FREE TTY TELE

5213
03:35:27,480 --> 03:35:28,680
COMMUNICATIONS RELAY SERVICES

5214
03:35:28,680 --> 03:35:30,160
THAT ARE AVAILABLE.

5215
03:35:30,160 --> 03:35:33,600
NEXT SLIDE, PLEASE.

5216
03:35:33,600 --> 03:35:35,720
SO THEY HAVE OUTREACH AND

5217
03:35:35,720 --> 03:35:36,880
ENGAGEMENT MATERIALS,

5218
03:35:36,880 --> 03:35:37,720
RECRUITMENT MATERIALS AND THEN

5219
03:35:37,720 --> 03:35:41,160
THEY HAVE ENROLLMENT MATERIALS.

5220
03:35:41,160 --> 03:35:42,920
THESE MATERIALS MEET 508

5221
03:35:42,920 --> 03:35:44,360
REQUIREMENTS AND ARE AT THE

5222
03:35:44,360 --> 03:35:46,440
SIXTH GRADE READING LEVEL OR

5223
03:35:46,440 --> 03:35:47,160
LOWER.

5224
03:35:47,160 --> 03:35:50,120
THEY PROVIDE SUPPORT ON THE

5225
03:35:50,120 --> 03:35:52,760
ENROLLMENT HOME PAGE VIA CHATBOX

5226
03:35:52,760 --> 03:35:55,240
TO ANSWER QUESTIONS IF PEOPLE

5227
03:35:55,240 --> 03:35:56,800
HAVE THEM.

5228
03:35:56,800 --> 03:35:58,920
AND ENROLLMENT CAN BE DONE

5229
03:35:58,920 --> 03:36:00,080
REMOTELY THROUGH A WESTBOUND

5230
03:36:00,080 --> 03:36:02,520
BROWSER OR A MOBILE APP THAT IS

5231
03:36:02,520 --> 03:36:04,880
SCREEN READER COMPATIBLE.

5232
03:36:04,880 --> 03:36:08,080
THEY ALSO PROVIDE IN-PERSON

5233
03:36:08,080 --> 03:36:08,920
ENROLLMENT OPPORTUNITIES AS A

5234
03:36:08,920 --> 03:36:10,920
NETWORK OF HEALTH PROVIDERS

5235
03:36:10,920 --> 03:36:12,120
ORGANIZATIONS SUCH AS HOSPITALS

5236
03:36:12,120 --> 03:36:13,960
AND CLINICS, WHERE ONE CAN GO

5237
03:36:13,960 --> 03:36:15,440
AND ENROLL IN THE PROGRAM AND

5238
03:36:15,440 --> 03:36:18,040
PROVIDE BIO SAMPLES.

5239
03:36:18,040 --> 03:36:19,600
THEY HAVE SEVERAL ALL OF US

5240
03:36:19,600 --> 03:36:21,600
JOURNEY BUSES THAT DOES

5241
03:36:21,600 --> 03:36:25,400
EDUCATION AND ENROLLMENT AND ARE

5242
03:36:25,400 --> 03:36:30,680
GOING ACROSS THE NATION MU OFTEO

5243
03:36:30,680 --> 03:36:32,520
RURAL AREAS TO PROVIDE EDUCATION

5244
03:36:32,520 --> 03:36:36,640
AND ENROLLMENT AND THEY SUPPORT

5245
03:36:36,640 --> 03:36:37,560
POP-UP CLINICS.

5246
03:36:37,560 --> 03:36:42,920
THEY'RE IN ACCESSIBILITY IN ACC.

5247
03:36:42,920 --> 03:36:46,280
FROM THE PARTICIPANT

5248
03:36:46,280 --> 03:36:48,680
PERSPECTIVE, I REALLY VALUE AND

5249
03:36:48,680 --> 03:36:51,000
THINK IT'S IMPORTANT THAT THE

5250
03:36:51,000 --> 03:36:53,760
SURVEYS ARE AT SIXTH GRADE LEVEL

5251
03:36:53,760 --> 03:36:57,040
OR LOWER.

5252
03:36:57,040 --> 03:37:03,240
I HAVE BEEN BLESS BLESS BLESSEDO

5253
03:37:03,240 --> 03:37:04,680
ACCESS TO EDUCATION SO IT'S

5254
03:37:04,680 --> 03:37:05,880
IMPORTANT GIVEN THE COMPLEXITY

5255
03:37:05,880 --> 03:37:07,040
OF SOME OF THESE QUESTIONS THAT

5256
03:37:07,040 --> 03:37:08,880
THE SURVEY ITEMS THEMSELVES ARE

5257
03:37:08,880 --> 03:37:12,760
AT SIXTH GRADE LEVEL OR LOWER.

5258
03:37:12,760 --> 03:37:15,640
THEY HAVE SALIVA KITS FOR FOLKS

5259
03:37:15,640 --> 03:37:16,800
WHO FIND IT DIFFICULT TO LEAVE

5260
03:37:16,800 --> 03:37:17,920
THEIR HOME OR TRANSPORTATION

5261
03:37:17,920 --> 03:37:19,120
ISN'T AVAILABLE.

5262
03:37:19,120 --> 03:37:20,920
THEY CAN GET THROUGH THE MAIL

5263
03:37:20,920 --> 03:37:27,000
AND RETURN TO THE PROGRAM.

5264
03:37:27,000 --> 03:37:28,800
I THINK IT'S IMPORTANT THEY

5265
03:37:28,800 --> 03:37:31,400
LISTEN AND ADD NEW.

5266
03:37:31,400 --> 03:37:36,320
IT'S NOT AROUND THE NEW SURVEYS.

5267
03:37:36,320 --> 03:37:39,480
FROM A PARTICIPANT PERSPECTIVE

5268
03:37:39,480 --> 03:37:42,080
IT'S REALLY IMPORTANT AND

5269
03:37:42,080 --> 03:37:49,080
UNDERSTAND AN ELAN ELEMENTOF EMM

5270
03:37:49,080 --> 03:37:50,360
MAINTAINS A WEBSITE OF ALL THE

5271
03:37:50,360 --> 03:37:51,680
DIFFERENT RESEARCH PROJECTS THAT

5272
03:37:51,680 --> 03:37:54,840
ARE GOING ON.

5273
03:37:54,840 --> 03:37:56,760
PARTICIPANTS OR OTHER

5274
03:37:56,760 --> 03:37:59,000
RESEARCHERS CAN INITIATE A

5275
03:37:59,000 --> 03:38:02,120
REVIEW OF WHAT THAT PERSON FEELS

5276
03:38:02,120 --> 03:38:07,040
LIKE THE STIGMATIZING RESEARCH

5277
03:38:07,040 --> 03:38:08,640
PROJECTS AND IT'S DONE BY A

5278
03:38:08,640 --> 03:38:10,200
RESEARCH ACCESS BOARD AND THAT

5279
03:38:10,200 --> 03:38:13,160
BOARD TAKES A RANDOM SAMPLE OF

5280
03:38:13,160 --> 03:38:14,240
PROJECTS ANNUALLY AS WELL TO

5281
03:38:14,240 --> 03:38:16,360
REVIEW TO SEE IF THERE'S

5282
03:38:16,360 --> 03:38:18,280
STIGMATIZING RESEARCH GOING ON.

5283
03:38:18,280 --> 03:38:26,480
THAT IS A POWERFUL CHOICE.

5284
03:38:26,480 --> 03:38:28,480
IT'S NOT PERFECT.

5285
03:38:28,480 --> 03:38:30,520
PEOPLE ARE WAITING FOR THE

5286
03:38:30,520 --> 03:38:32,200
IMPLIED CRITICISM OR THE DIRECT

5287
03:38:32,200 --> 03:38:32,800
CRITICISM.

5288
03:38:32,800 --> 03:38:34,320
AND I'M HAPPY TO GIVE THAT

5289
03:38:34,320 --> 03:38:36,800
BECAUSE IT HELPS IMPROVE THE

5290
03:38:36,800 --> 03:38:39,600
PROGRAMS.

5291
03:38:39,600 --> 03:38:41,840
SO, WHILE MOST OF THE

5292
03:38:41,840 --> 03:38:43,640
RECRUITMENT MATERIALS ARE 508

5293
03:38:43,640 --> 03:38:45,640
COMPLIANCE, THEY ALL HAVE TO BE

5294
03:38:45,640 --> 03:38:51,280
508 COMPLIANT.

5295
03:38:51,280 --> 03:38:53,520
THE DISABILITY ARE LIMITED TO

5296
03:38:53,520 --> 03:38:55,760
MOBILITY AND OTHER VISIBLE

5297
03:38:55,760 --> 03:38:58,000
DISABILITIES AND THEY LACK IN MY

5298
03:38:58,000 --> 03:38:59,640
OPINION, KIND OF

5299
03:38:59,640 --> 03:39:02,040
INTERSECTIONALITY BETWEEN RACE,

5300
03:39:02,040 --> 03:39:06,800
ETHNICITY, AND DISABILITY.

5301
03:39:06,800 --> 03:39:08,440
THE LANDING PAGES AND SOME OF

5302
03:39:08,440 --> 03:39:11,000
THE FRONT PAGES OF THE AOU WEB

5303
03:39:11,000 --> 03:39:15,160
SITES ARE 508 COMPLIANT.

5304
03:39:15,160 --> 03:39:17,880
LIKE MANY WEB SITES, WHEN YOU

5305
03:39:17,880 --> 03:39:18,720
START DRILLING DEEPER THERE'S

5306
03:39:18,720 --> 03:39:20,960
PROBLEMS WITH 508 COMPLIANCE AND

5307
03:39:20,960 --> 03:39:25,000
MEETING THOSE STANDA STANDARDS S

5308
03:39:25,000 --> 03:39:29,440
TOUGH BUT IT NEEDS TO BE MET.

5309
03:39:29,440 --> 03:39:31,560
THE FOCUS ON INTERSECTIONALITY

5310
03:39:31,560 --> 03:39:33,080
THAT WE HAVE AROUND DISABILITY

5311
03:39:33,080 --> 03:39:36,360
RACE AND ETHNICITY, IS REALLY

5312
03:39:36,360 --> 03:39:39,640
UNDER CUT BY THE FACT THAT THE

5313
03:39:39,640 --> 03:39:41,000
SURVEYS ARE OFFERED AND THE

5314
03:39:41,000 --> 03:39:42,520
MATERIALS ARE OFFERED IN ENGLISH

5315
03:39:42,520 --> 03:39:44,400
AND SPANISH AND THAT IS AN AREA

5316
03:39:44,400 --> 03:39:46,440
WHERE THEY NEED TO DO MORE WORK

5317
03:39:46,440 --> 03:39:49,040
AND OFFER THEM IN OTHER

5318
03:39:49,040 --> 03:39:49,440
LANGUAGES.

5319
03:39:49,440 --> 03:39:52,840
AND THEY DON'T ALWAYS FOLLOW

5320
03:39:52,840 --> 03:39:55,000
BEST PRACTICES OF HAVING THEIR

5321
03:39:55,000 --> 03:39:56,520
PROGRAMS LED OF PRESENTATIONS

5322
03:39:56,520 --> 03:40:00,080
AND CONFERENCES AND THE INTERNAL

5323
03:40:00,080 --> 03:40:03,520
MEETINGS AND HAVING ASL

5324
03:40:03,520 --> 03:40:05,120
INTERPRETERS AND CART BEING

5325
03:40:05,120 --> 03:40:05,840
OFFERED.

5326
03:40:05,840 --> 03:40:08,560
WHILE THE JOURNEY BUSES ARE

5327
03:40:08,560 --> 03:40:09,560
ACCESSIBLE, WE HAVE MONITORED

5328
03:40:09,560 --> 03:40:13,760
THEM TO MAKE SURE THAT THERE'S A

5329
03:40:13,760 --> 03:40:16,000
RAMP AT THE BACK OF THE BUS,

5330
03:40:16,000 --> 03:40:18,040
THEY DON'T PARK THE BUS WITH A

5331
03:40:18,040 --> 03:40:19,320
HAM NOT HOLE BEHIND IT SO THAT

5332
03:40:19,320 --> 03:40:23,480
IS AN AREA THAT NEEDS TO BE

5333
03:40:23,480 --> 03:40:31,840
MONITORED.

5334
03:40:31,840 --> 03:40:32,920
THERE'S AN EFFORT TO ADDRESS

5335
03:40:32,920 --> 03:40:38,320
THESE AND I THINK AHD WAS PRIOR

5336
03:40:38,320 --> 03:40:39,960
TO A YEAR AND THREE QUARTERS AGO

5337
03:40:39,960 --> 03:40:41,760
WAS A SUB AWARD' AND IT DIDN'T

5338
03:40:41,760 --> 03:40:45,840
HAVE THE INFLUENCE IT HAS NOW

5339
03:40:45,840 --> 03:40:47,640
AND SO WE'RE SPONSORING A PHOTO

5340
03:40:47,640 --> 03:40:51,720
SHOOT THAT WILL PROVIDE A BROAD

5341
03:40:51,720 --> 03:40:54,520
ARRAY OF DISABILITY IMAGES BEING

5342
03:40:54,520 --> 03:40:54,960
REPRESENTED.

5343
03:40:54,960 --> 03:40:58,080
WE HAVE A REMEDIATION SPECIALIST

5344
03:40:58,080 --> 03:41:00,200
SO WE'LL DO A LOT TAGS SO IF THE

5345
03:41:00,200 --> 03:41:03,240
PERSON LIKE MYSELF, HAS A NON

5346
03:41:03,240 --> 03:41:07,120
ADVISABLE DISABILITY, THEY'LL BE

5347
03:41:07,120 --> 03:41:10,520
AN ALT TAG TO INDICATE WHAT THAT

5348
03:41:10,520 --> 03:41:11,400
IS.

5349
03:41:11,400 --> 03:41:15,000
PEDIATRIC ENROLLMENT IS UNDER

5350
03:41:15,000 --> 03:41:15,600
DEVELOPMENT.

5351
03:41:15,600 --> 03:41:17,880
AND THEY HAVE SPECIFICALLY

5352
03:41:17,880 --> 03:41:22,640
DECIDED TO INCLUDE CHILDREN WITH

5353
03:41:22,640 --> 03:41:25,240
DISABILITIES.

5354
03:41:25,240 --> 03:41:27,840
KIDS WITH IDD OR OTHER KINDS OF

5355
03:41:27,840 --> 03:41:31,560
DISABILITIES ARE NOT GOING TO BE

5356
03:41:31,560 --> 03:41:33,080
EXCLUDED FROM THE PEDIATRIC

5357
03:41:33,080 --> 03:41:34,680
RESEARCH THAT IS GOING ON AND

5358
03:41:34,680 --> 03:41:38,320
WE'VE BEEN WORKING CLOSELY WITH

5359
03:41:38,320 --> 03:41:43,000
THE NEW DIRECTOR OF PEDIATRICS.

5360
03:41:43,000 --> 03:41:44,880
HAVING DISCUSSIONS ABOUT OPTIONS

5361
03:41:44,880 --> 03:41:49,160
FOR HOW YOU DEFINE DISABILITY

5362
03:41:49,160 --> 03:41:50,960
AND MECHANISMS FOR INSURING KIDS

5363
03:41:50,960 --> 03:41:52,160
WITH DISABILITIES AND THEIR

5364
03:41:52,160 --> 03:41:55,920
PARENTS HAVE AN OPPORTUNITY TO

5365
03:41:55,920 --> 03:41:56,520
ENROLL.

5366
03:41:56,520 --> 03:41:59,600
THEY'RE TALKING ABOUT DOING HOME

5367
03:41:59,600 --> 03:42:01,320
VISITS WHICH IS KIND OF MIND

5368
03:42:01,320 --> 03:42:05,080
BOGGLING BUT MAY HAVE REALLY

5369
03:42:05,080 --> 03:42:07,480
HELPED A NUMBER OF PEOPLE WITH

5370
03:42:07,480 --> 03:42:08,400
DISABILITIES THAT FIND IT

5371
03:42:08,400 --> 03:42:10,080
DIFFICULT TO GET OUT OF HOME OR

5372
03:42:10,080 --> 03:42:10,880
HAVE TRANSPORTATION ISSUES.

5373
03:42:10,880 --> 03:42:15,120
IT'S BEEN A DISABILITY SURVEY

5374
03:42:15,120 --> 03:42:17,600
THAT WAS -- WE GAVE COMMENTS ON

5375
03:42:17,600 --> 03:42:18,560
SEVERAL YEARS AGO.

5376
03:42:18,560 --> 03:42:20,280
IT'S NOW BEING REVISITED TO SEE

5377
03:42:20,280 --> 03:42:26,120
IF THAT CAN'T BE TWEAKED.

5378
03:42:26,120 --> 03:42:28,520
SO WHAT I WANT TO SAY ABOUT THE

5379
03:42:28,520 --> 03:42:31,240
PROGRAM IS IF YOU ARE OKAY WITH

5380
03:42:31,240 --> 03:42:34,960
A LONGITUDINAL OBSERVATIONAL

5381
03:42:34,960 --> 03:42:36,360
COHORT, IT'S A GREAT OPPORTUNITY

5382
03:42:36,360 --> 03:42:40,280
TO DO RESEARCH THAT IS FOCUSED

5383
03:42:40,280 --> 03:42:44,280
ON HEALTH EQUITY AND VICE I'D

5384
03:42:44,280 --> 03:42:46,680
THE HEALTHCARE PRECISION

5385
03:42:46,680 --> 03:42:47,320
MEDICINE.

5386
03:42:47,320 --> 03:42:49,320
THE RESEARCHER WORK BENCH IS

5387
03:42:49,320 --> 03:42:52,000
ACCESSIBLE AND IT'S 508

5388
03:42:52,000 --> 03:42:53,560
COMPLIANT SO IF YOU HAVE LOW

5389
03:42:53,560 --> 03:42:54,760
VISION OR ARE BLIND, THERE'S

5390
03:42:54,760 --> 03:42:57,560
OPPORTUNITIES TO DO RESEARCH.

5391
03:42:57,560 --> 03:42:58,640
ONE OF THE THINGS THAT WE'VE

5392
03:42:58,640 --> 03:43:03,800
JUST STARTED DOING RECENTLY, IS

5393
03:43:03,800 --> 03:43:06,160
CO-SPONSORING A WEBINAR ON THE

5394
03:43:06,160 --> 03:43:09,400
RESEARCHER WORK BENCH ITSELF.

5395
03:43:09,400 --> 03:43:11,840
IN OLE CAB RACE WITH FOLKS FROM

5396
03:43:11,840 --> 03:43:12,320
VANDERBILT UNIVERSITY.

5397
03:43:12,320 --> 03:43:13,120
IF APPROXIMATE YOU ARE

5398
03:43:13,120 --> 03:43:14,200
INTERESTED IN THAT SORT OF

5399
03:43:14,200 --> 03:43:19,440
THING, YOU CAN E-MAIL ME.

5400
03:43:19,440 --> 03:43:22,120
AND I LOOK FORWARD TO ANSWERING

5401
03:43:22,120 --> 03:43:23,920
ANY OF THE QUESTIONS THAT HAVE

5402
03:43:23,920 --> 03:43:24,920
COME UP ABOUT THE PARTICULAR

5403
03:43:24,920 --> 03:43:27,960
PROGRAM.

5404
03:43:27,960 --> 03:43:38,120
THANK YOU.

5405
03:43:38,520 --> 03:43:41,040
>>YOU ARE ON MUTE, KATHY.

5406
03:43:41,040 --> 03:43:41,760
>>SORRY.

5407
03:43:41,760 --> 03:43:43,040
THANK YOU VERY MUCH CHARLES FOR

5408
03:43:43,040 --> 03:43:47,080
YOUR PRESENTATION.

5409
03:43:47,080 --> 03:43:52,360
I WANT TO REMIND EVERYBODY THAT

5410
03:43:52,360 --> 03:43:54,320
QUESTIONS AND ANSWERS WILL ONLY

5411
03:43:54,320 --> 03:43:58,520
BE ADDRESSED IF THEY'RE IN THE

5412
03:43:58,520 --> 03:43:59,720
Q&A.

5413
03:43:59,720 --> 03:44:07,320
THE ABILITY TO REACH OUT TO --

5414
03:44:07,320 --> 03:44:09,680
TO RESPOND TO YOUR QUESTIONS IS

5415
03:44:09,680 --> 03:44:11,480
CHALLENGED IF YOU ARE NOT

5416
03:44:11,480 --> 03:44:13,600
PUTTING THEM IN THE Q&A
SECTION

5417
03:44:13,600 --> 03:44:17,160
SO THANK YOU VERY MUCH FOR

5418
03:44:17,160 --> 03:44:21,680
EVERYBODY TO FOR O'BONSAWIN

5419
03:44:21,680 --> 03:44:22,840
THAT.

5420
03:44:22,840 --> 03:44:24,240
I GUESS I WILL START BY ASKING A

5421
03:44:24,240 --> 03:44:27,440
COUPLE QUESTIONS.

5422
03:44:27,440 --> 03:44:33,880
ONE IS, CHARLES, IS THERE ALL

5423
03:44:33,880 --> 03:44:37,880
THE OF US IS NOT ACCESSIBLE TO

5424
03:44:37,880 --> 03:44:40,800
PEOPLE WHO RECOGNIZE TO SPEECH

5425
03:44:40,800 --> 03:44:42,000
RECOGNITION AND DETECTION

5426
03:44:42,000 --> 03:44:44,000
SOFTWARE.

5427
03:44:44,000 --> 03:44:45,360
ARE THERE PLANS TO ADDRESS THAT

5428
03:44:45,360 --> 03:44:52,040
AND SECONDARILY, THE MORE

5429
03:44:52,040 --> 03:44:56,160
GENERIC QUESTION OF ENGAGING THE

5430
03:44:56,160 --> 03:44:59,760
COMMUNITY, NOT ONLY BEFORE BUT

5431
03:44:59,760 --> 03:45:01,320
AFTER IS PROBABLY A CHALLENGE

5432
03:45:01,320 --> 03:45:04,560
FOR ALL OF US.

5433
03:45:04,560 --> 03:45:07,800
IN THAT THE COMMUNITY IS ACROSS

5434
03:45:07,800 --> 03:45:12,640
THE COUNTRY, EVERYWHERE.

5435
03:45:12,640 --> 03:45:17,840
SO, HOW DO YOU ENSURE THE

5436
03:45:17,840 --> 03:45:19,960
PARTICIPANTS THAT YOU HEAR THEM

5437
03:45:19,960 --> 03:45:22,360
QUITE LITERALLY AS IN VOICE

5438
03:45:22,360 --> 03:45:24,680
RECOGNITION SOFTWARE, BUT ALSO,

5439
03:45:24,680 --> 03:45:28,080
THAT YOU HEAR THEM THAT WE WANT

5440
03:45:28,080 --> 03:45:31,320
DIRECT -- OR THAT PARTICIPANTS

5441
03:45:31,320 --> 03:45:34,720
WANT TO SEE THAT THEY AND THEIR

5442
03:45:34,720 --> 03:45:36,480
COMMUNITY GOING BACK TO THE

5443
03:45:36,480 --> 03:45:41,600
ISSUE OF TAILORED MEDICINE,

5444
03:45:41,600 --> 03:45:42,360
INDIVIDUALIZED MATERIAL ORDER

5445
03:45:42,360 --> 03:45:43,840
MEDICINE, HOW DOES THE COMMUNITY

5446
03:45:43,840 --> 03:45:47,160
BENEFIT FROM PARTICIPATING?

5447
03:45:47,160 --> 03:45:48,320
>>THERE'S SEVERAL
DIFFERENT

5448
03:45:48,320 --> 03:45:51,000
WAYS TO ANSWER THAT PARTICULAR

5449
03:45:51,000 --> 03:45:51,440
QUESTION.

5450
03:45:51,440 --> 03:45:55,120
LET BE ME CLEAR AND IF I WANT AT

5451
03:45:55,120 --> 03:45:59,360
THE OUTSET THE PROGRAM IS NOT

5452
03:45:59,360 --> 03:46:01,320
PERFECT.

5453
03:46:01,320 --> 03:46:02,480
AFTER 30 YEARS WORKING IN

5454
03:46:02,480 --> 03:46:03,840
DISABILITY RESEARCH FIELD IN MY

5455
03:46:03,840 --> 03:46:07,280
OWN OPINION, IT'S THE PROGRAM

5456
03:46:07,280 --> 03:46:10,000
AND AFTER FUNDING FROM CDC AND

5457
03:46:10,000 --> 03:46:20,520
NIH AND DOE AND ACL I SEE MORE

5458
03:46:21,000 --> 03:46:22,560
COMMITMENT TO ACCESSIBILITY THAN

5459
03:46:22,560 --> 03:46:26,120
ANY OTHER PROGRAM OVER THE

5460
03:46:26,120 --> 03:46:28,360
YEARS.

5461
03:46:28,360 --> 03:46:29,480
WE SERVE AS A VOICE.

5462
03:46:29,480 --> 03:46:31,360
I HAVE NOT HEARD FROM THE

5463
03:46:31,360 --> 03:46:34,920
DISABILITY COMMUNITY ABOUT THE

5464
03:46:34,920 --> 03:46:36,040
DRAG ON OF BARRIER.

5465
03:46:36,040 --> 03:46:38,280
WE WILL WELCOME, I WELCOME, ANY

5466
03:46:38,280 --> 03:46:42,720
PERSON WITH A DISABILITY, ANY

5467
03:46:42,720 --> 03:46:44,440
DISABILITY RESEARCH ANY

5468
03:46:44,440 --> 03:46:46,920
RESEARCHER WHO KNOWS OF

5469
03:46:46,920 --> 03:46:47,960
DEFICIENCIES IN THE PROGRAM TO

5470
03:46:47,960 --> 03:46:49,360
BRING IT TO OUR ATTENTION

5471
03:46:49,360 --> 03:46:50,520
BECAUSE THAT'S PART OF OUR JOB

5472
03:46:50,520 --> 03:46:53,360
IS TO BRING IT UP WITH THEM AND

5473
03:46:53,360 --> 03:46:54,320
TO PUSH THEM.

5474
03:46:54,320 --> 03:46:55,760
NOW WITHIN OUR OWN PROGRAMS

5475
03:46:55,760 --> 03:46:57,640
WHERE WE HAVE A REMEDIATION

5476
03:46:57,640 --> 03:46:59,040
SPECIALIST, AND SO WE WORK ON

5477
03:46:59,040 --> 03:47:03,480
THESE ACCESSIBILITY ISSUES, THE

5478
03:47:03,480 --> 03:47:05,280
PROGRAM HAS WAY MORE RESOURCES

5479
03:47:05,280 --> 03:47:08,080
THAN WE DO SO WE HAVE TO BE A

5480
03:47:08,080 --> 03:47:12,760
CONDUIT TO PUSH ON THESE KINDS

5481
03:47:12,760 --> 03:47:16,120
OF ISSUES AND I'M HAPPY DOING

5482
03:47:16,120 --> 03:47:19,440
THAT AND I'M HAPPIER WHEN WE SEE

5483
03:47:19,440 --> 03:47:23,120
RESULTS OF THESE KINDS OF ISSUES

5484
03:47:23,120 --> 03:47:23,760
AND CONCERNS.

5485
03:47:23,760 --> 03:47:26,120
YOU KNOW, WE FORMED THIS

5486
03:47:26,120 --> 03:47:27,360
DISABILITY CONSORTIUM SO WE

5487
03:47:27,360 --> 03:47:32,440
COULD HAVE A BROAD EFFECT SO WE

5488
03:47:32,440 --> 03:47:36,800
TAKE A POINT OR PROJECT AND

5489
03:47:36,800 --> 03:47:38,920
PROGRAM AND MIDDLE, ALL OF THE

5490
03:47:38,920 --> 03:47:39,880
DISABILITIES ORGANIZATIONS AND

5491
03:47:39,880 --> 03:47:43,280
NATIONAL AND LOCAL AND MASS OR

5492
03:47:43,280 --> 03:47:45,280
THE TARGET AUDIENCE SO WE USE OR

5493
03:47:45,280 --> 03:47:50,160
PARTNERS TO GET THE WORD OUT TO

5494
03:47:50,160 --> 03:47:51,120
THE BROADER DISABILITY

5495
03:47:51,120 --> 03:47:51,760
COMMUNITY.

5496
03:47:51,760 --> 03:47:53,000
WE KNOW, HOWEVER, A LOT OF FOLKS

5497
03:47:53,000 --> 03:47:59,240
WITH DISABILITIES DON'T THINK OF

5498
03:47:59,240 --> 03:48:01,240
THEMSELVES AS HAVING A

5499
03:48:01,240 --> 03:48:03,480
DISABILITY AND AREN'T PART OF

5500
03:48:03,480 --> 03:48:04,880
FORMAL DISABILITY ORGANIZATIONS,

5501
03:48:04,880 --> 03:48:08,360
WE TRIED TO THINK OF WAYS TO

5502
03:48:08,360 --> 03:48:09,680
REACH THAT POPULATION.

5503
03:48:09,680 --> 03:48:11,040
IF WE HAD $30 MILLION A YEAR WE

5504
03:48:11,040 --> 03:48:17,640
MIGHT BE MORE SUCCESSFUL AT IT

5505
03:48:17,640 --> 03:48:19,120
SO WE'RE PLANNING FOR YEAR THREE

5506
03:48:19,120 --> 03:48:25,320
AND WE ARE GOING TO FOCUS ON

5507
03:48:25,320 --> 03:48:27,080
EXPANDING OUR REACH TO

5508
03:48:27,080 --> 03:48:28,120
DISABILITY ORGANIZATIONS KNOWING

5509
03:48:28,120 --> 03:48:29,440
THERE'S LIMITATIONS AND HOW MANY

5510
03:48:29,440 --> 03:48:32,800
FOLKS THAT WE CAN REACH.

5511
03:48:32,800 --> 03:48:36,440
THE LAST THING I'LL SAY IS THAT

5512
03:48:36,440 --> 03:48:38,240
THIS IS APP OPPORTUNITY FOR

5513
03:48:38,240 --> 03:48:43,120
RESEARCHERS TO SIGN UP AND

5514
03:48:43,120 --> 03:48:43,640
UTILIZE THIS DATA.

5515
03:48:43,640 --> 03:48:45,160
THIS IS WHERE THE DISABILITY

5516
03:48:45,160 --> 03:48:46,880
COMMUNITY NEEDS TO WORK WITH THE

5517
03:48:46,880 --> 03:48:48,200
RESEARCHERS AND DISABILITY

5518
03:48:48,200 --> 03:48:49,360
RESEARCHERS LIKE MYSELF, NEED TO

5519
03:48:49,360 --> 03:48:52,560
BE FULLY COMMITTED TO

5520
03:48:52,560 --> 03:48:53,640
PARTICIPATORY ACTION RESEARCH,

5521
03:48:53,640 --> 03:48:57,280
YEAH, YOU'VE GOT SOME GREAT

5522
03:48:57,280 --> 03:48:58,400
DATA, YOU NEED TO UNDERSTAND

5523
03:48:58,400 --> 03:49:00,360
WHAT YOUR RESEARCHING AND

5524
03:49:00,360 --> 03:49:02,720
EMPHASIZE WHAT YOU WANT OUT OF

5525
03:49:02,720 --> 03:49:03,160
IT.

5526
03:49:03,160 --> 03:49:05,200
AND I THINK WE'VE PRETTY MUCH

5527
03:49:05,200 --> 03:49:08,360
DOCUMENTED THAT HEALTH

5528
03:49:08,360 --> 03:49:09,200
DISPARITIES EXIST.

5529
03:49:09,200 --> 03:49:11,320
WE NEED RESEARCH THAT COMES UP

5530
03:49:11,320 --> 03:49:15,040
WITH PRAB ATTIC AND POLICY

5531
03:49:15,040 --> 03:49:16,720
INTERVENTIONS TO STARTS THEM AND

5532
03:49:16,720 --> 03:49:27,000
I'LL STOP THERE.

5533
03:49:34,560 --> 03:49:39,800
VERY QUICKLY, I'LL ASK ONE OF

5534
03:49:39,800 --> 03:49:41,200
THE OTHER QUESTIONS HERE, THAT

5535
03:49:41,200 --> 03:49:44,240
IS, HOW DOES SOMEONE WHO IS OR

5536
03:49:44,240 --> 03:49:48,600
WANTS TO BE A PARTICIPANT IN ALL

5537
03:49:48,600 --> 03:49:51,160
OF US, IDENTIFY THE CONCERNS

5538
03:49:51,160 --> 03:49:55,280
THAT ARE KEEPING THEM FROM

5539
03:49:55,280 --> 03:49:56,560
PARTICIPATING?

5540
03:49:56,560 --> 03:49:58,320
>>PART OF WHAT WE
EMPHASIZE

5541
03:49:58,320 --> 03:50:01,040
WHEN WE MEET WITH FOLKS WITH

5542
03:50:01,040 --> 03:50:04,680
DISABILITIES, AND WE DO

5543
03:50:04,680 --> 03:50:06,480
PRESENTATIONS OR WEBINARS OR THE

5544
03:50:06,480 --> 03:50:07,640
INFORMATION WE'RE SENDING OUT IS

5545
03:50:07,640 --> 03:50:09,640
WE GET AHEAD OF THINGS, RIGHT.

5546
03:50:09,640 --> 03:50:13,880
DATA SECURITY IS A BIG ISSUE.

5547
03:50:13,880 --> 03:50:15,080
BECAUSE OF THE HISTORICAL

5548
03:50:15,080 --> 03:50:17,080
TREATMENT OF PEOPLE WITH

5549
03:50:17,080 --> 03:50:20,880
DISABILITIES AND THE POOR

5550
03:50:20,880 --> 03:50:22,080
TREATMENT.

5551
03:50:22,080 --> 03:50:26,200
SO WHAT WE DO IS TRY TO CAPTURE

5552
03:50:26,200 --> 03:50:27,880
AND DESCRIBE THE EXTENSIVE

5553
03:50:27,880 --> 03:50:32,200
EFFORTS THAT THE PROGRAM

5554
03:50:32,200 --> 03:50:33,280
SUBPOENA MADE O KEEP THE DATA

5555
03:50:33,280 --> 03:50:34,920
SECURE AND MAKE SURE THERE ARE

5556
03:50:34,920 --> 03:50:36,520
NOT DATA BREACHES SO THAT'S PART

5557
03:50:36,520 --> 03:50:41,960
OF WHAT WE DO.

5558
03:50:41,960 --> 03:50:43,760
WHEN WE DO PRESENTATIONS, SAY

5559
03:50:43,760 --> 03:50:45,200
WE'RE WORKING WITH A LOCAL

5560
03:50:45,200 --> 03:50:49,840
INTEREST FOR INDEPENDENT LIVING

5561
03:50:49,840 --> 03:50:51,840
AND WE'RE AT A MEETING THERE

5562
03:50:51,840 --> 03:50:52,920
VIRTUALLY, WE WANT PEOPLE TO

5563
03:50:52,920 --> 03:50:57,600
RAISE THESE ISSUES AND CONCERNS.

5564
03:50:57,600 --> 03:50:58,880
IF THEY KNOW THERE'S A LOCAL

5565
03:50:58,880 --> 03:51:00,320
HEALTH PROVIDER ORGANIZATION,

5566
03:51:00,320 --> 03:51:01,920
THAT'S PART OF THE NETWORK, AND

5567
03:51:01,920 --> 03:51:03,600
THEY KNOW THAT IT'S

5568
03:51:03,600 --> 03:51:05,520
INACCESSIBLE, WE WANT TO HEAR

5569
03:51:05,520 --> 03:51:09,040
THAT BECAUSE PART OF OUR JOB IS

5570
03:51:09,040 --> 03:51:10,920
NOT JUST PROVIDING INFORMATION

5571
03:51:10,920 --> 03:51:15,880
ABOUT THE PROGRAMS, BUT IT'S

5572
03:51:15,880 --> 03:51:16,560
RAISING THESE ISSUES

5573
03:51:16,560 --> 03:51:17,200
DIRECTIONALLY WITH THE PROGRAM

5574
03:51:17,200 --> 03:51:21,120
SO I HOPE THAT ANSWERS YOUR

5575
03:51:21,120 --> 03:51:22,960
QUESTIONS.

5576
03:51:22,960 --> 03:51:24,400
>>SO WE NEED TO MOVE ON.

5577
03:51:24,400 --> 03:51:25,760
THERE ARE A LOT OF OTHER

5578
03:51:25,760 --> 03:51:26,480
QUESTIONS AND I'M SORRY THAT

5579
03:51:26,480 --> 03:51:27,680
WE'RE NOT GOING TO BE ABLE TO

5580
03:51:27,680 --> 03:51:30,040
GET TO ALL OF THEM TODAY DURING

5581
03:51:30,040 --> 03:51:30,720
THE MEETING.

5582
03:51:30,720 --> 03:51:33,280
I WANT TO REMIND PEOPLE WE WILL

5583
03:51:33,280 --> 03:51:38,320
MAKE EVERY EFFORT TO REACH BACK

5584
03:51:38,320 --> 03:51:41,840
TO QUESTIONERS AND PROVIDE

5585
03:51:41,840 --> 03:51:42,320
ANSWERS.

5586
03:51:42,320 --> 03:51:45,160
PLEASE STICK WITH US.

5587
03:51:45,160 --> 03:51:46,920
DON'T BE AFRAID TO PUT YOUR

5588
03:51:46,920 --> 03:51:47,960
QUESTIONS, POSITIVE OR NEGATIVE

5589
03:51:47,960 --> 03:51:51,600
INTO THE Q&A AND WE'LL
ADDRESS

5590
03:51:51,600 --> 03:51:52,080
THEM.

5591
03:51:52,080 --> 03:51:55,080
AS BEST WE'RE ABLE TO.

5592
03:51:55,080 --> 03:52:00,040
OUR NEXT PRESENTER Ms. EVE

5593
03:52:00,040 --> 03:52:01,240
HILL, IT WILL BE DISCUSSING

5594
03:52:01,240 --> 03:52:05,440
LEGAL PROTECTIONS AND

5595
03:52:05,440 --> 03:52:06,880
OPPORTUNITIES EVE HILL IS A

5596
03:52:06,880 --> 03:52:09,040
PARTNER AT BROWN GOLDSTEIN AND

5597
03:52:09,040 --> 03:52:11,280
LEVEE AND FOUNDER OF THE

5598
03:52:11,280 --> 03:52:13,360
INCLUSIVITY STRATEGIC

5599
03:52:13,360 --> 03:52:14,080
CONSULTING.

5600
03:52:14,080 --> 03:52:16,560
EVE HAS DECADES OF EXPERIENCE

5601
03:52:16,560 --> 03:52:19,000
IMPLEMENTING THE AMERICANS WITH

5602
03:52:19,000 --> 03:52:22,760
DISABILITIES AGENT AND ZOO

5603
03:52:22,760 --> 03:52:24,920
DISABILITIES RIDES LAWS THROUGH

5604
03:52:24,920 --> 03:52:28,880
CONSULTATION, TRAINING, GUIDANCE

5605
03:52:28,880 --> 03:52:29,800
AND ENFORCEMENT.

5606
03:52:29,800 --> 03:52:31,120
SHE'S A SENIOR FEDERAL

5607
03:52:31,120 --> 03:52:32,240
GOVERNMENT OFFICIAL AT THE

5608
03:52:32,240 --> 03:52:33,080
DEPARTMENT OF JUSTICE CIVIL

5609
03:52:33,080 --> 03:52:36,360
RIGHTS DIVISION, AS A DIRECTOR

5610
03:52:36,360 --> 03:52:37,800
OF DISTRICT OF COLOMBIA OFFICE

5611
03:52:37,800 --> 03:52:41,560
OF DISABILITIES RIGHTS AND AT

5612
03:52:41,560 --> 03:52:47,920
THE BURTON BLAT INSTITUTE IN AK

5613
03:52:47,920 --> 03:52:49,520
A DEEMIA NON-PROFIT SECTOR.

5614
03:52:49,520 --> 03:52:53,360
SHE HAS EXPERIENCE HELPING

5615
03:52:53,360 --> 03:52:55,360
ENTITIES GO BEYOND COMPLIANCE

5616
03:52:55,360 --> 03:52:57,120
WITH DIS ACT AS PART OF THEIR

5617
03:52:57,120 --> 03:52:58,800
DIVERSITY AND EQUITY AND

5618
03:52:58,800 --> 03:52:59,760
INCLUSION EFFORTS ALL AROUND.

5619
03:52:59,760 --> 03:53:01,200
THANK YOU, EVE.

5620
03:53:01,200 --> 03:53:03,960
TAKE IT AWAY.

5621
03:53:03,960 --> 03:53:04,440
>>THANK YOU.

5622
03:53:04,440 --> 03:53:06,440
I WANT TO DO A VISUAL

5623
03:53:06,440 --> 03:53:07,480
DESCRIPTION OF MYSELF.

5624
03:53:07,480 --> 03:53:10,000
A I'M A WHITE WOMAN WITH

5625
03:53:10,000 --> 03:53:11,720
REDDISH-BROWN HAIR AND FRECKLES.

5626
03:53:11,720 --> 03:53:13,440
I'M SITTING IN FRONT OF A SCREEN

5627
03:53:13,440 --> 03:53:17,720
THAT HAS SOME FLOWERS ON IT.

5628
03:53:17,720 --> 03:53:19,720
I'M WEARING A BLACK AND WHITE

5629
03:53:19,720 --> 03:53:20,000
JACKET.

5630
03:53:20,000 --> 03:53:24,480
I HAVE A HIDDEN DISABILITY AND

5631
03:53:24,480 --> 03:53:27,240
I'M SHE/HER/HERS.

5632
03:53:27,240 --> 03:53:29,720
I AM THE MOST BORING SLIDES IN

5633
03:53:29,720 --> 03:53:30,080
THE WORLD.

5634
03:53:30,080 --> 03:53:32,640
THIS IS A LOVELY SUNSET COLORED

5635
03:53:32,640 --> 03:53:33,960
SLIDE THAT AS ABLEISM IN

5636
03:53:33,960 --> 03:53:35,480
MEDICINE AND SCIENTIFIC RESEARCH

5637
03:53:35,480 --> 03:53:36,600
AND LEGAL TOOLS AND TECHNIQUES

5638
03:53:36,600 --> 03:53:37,960
AND I WANT TO THANK THE

5639
03:53:37,960 --> 03:53:39,160
ORGANIZERS OF THIS REALLY

5640
03:53:39,160 --> 03:53:41,480
IMPORTANT CONFERENCE AND

5641
03:53:41,480 --> 03:53:42,320
CONVERSATION.

5642
03:53:42,320 --> 03:53:43,600
SOCIETY HAS IGNORED DISABILITY

5643
03:53:43,600 --> 03:53:44,680
IN THE FIELDS OF MEDICINE AND

5644
03:53:44,680 --> 03:53:46,360
CLINICAL RESEARCH FOR SO LONG

5645
03:53:46,360 --> 03:53:48,400
AND THIS CONVERSATION REALLY

5646
03:53:48,400 --> 03:53:49,720
BEGINS TO CHANGE THAT AND BRING

5647
03:53:49,720 --> 03:53:51,280
THE ISSUE INTO THE LIGHT AND I'M

5648
03:53:51,280 --> 03:53:52,680
REALLY HAPPY TO HAVE BEEN

5649
03:53:52,680 --> 03:53:57,680
INVITED TO BE A PART OF IT EVEN

5650
03:53:57,680 --> 03:53:59,560
THOUGH I'M NOT A DOCTOR OR PH.D,

5651
03:53:59,560 --> 03:54:06,280
I'M JUST A LAWYER.

5652
03:54:06,280 --> 03:54:07,200
WAY HEAVED ABOUT THE PREVALENCE

5653
03:54:07,200 --> 03:54:08,320
OF ABLEISM IN THE FIELDS OF

5654
03:54:08,320 --> 03:54:09,720
MEDICINE AND CLINICAL RESEARCH

5655
03:54:09,720 --> 03:54:11,280
AND THE TREMENDOUS NEGATIVE

5656
03:54:11,280 --> 03:54:12,960
EFFECTS OF SUCH ABLEISM ON

5657
03:54:12,960 --> 03:54:14,520
PEOPLE WITH DISABILITIES AND ON

5658
03:54:14,520 --> 03:54:15,920
THE QUALITY OF HEALTHCARE, AND

5659
03:54:15,920 --> 03:54:17,840
ON THE QUALITY OF CLINICAL

5660
03:54:17,840 --> 03:54:19,240
RESEARCH AND THIS SLIDE HAS JUST

5661
03:54:19,240 --> 03:54:22,880
A PICTURE OF A SET OF VIALS FOR

5662
03:54:22,880 --> 03:54:26,600
MEDICINE MEDICAL TESTING.

5663
03:54:26,600 --> 03:54:27,760
WE'RE DEALING WITH PHYSICIANS

5664
03:54:27,760 --> 03:54:28,840
WITH ABLEIST BELIEVES ABOUT THE

5665
03:54:28,840 --> 03:54:30,120
LIVES OF PEOPLE WITH DISABILITY

5666
03:54:30,120 --> 03:54:31,840
AND PHYSICIAN WHO'S ARE HESITANT

5667
03:54:31,840 --> 03:54:33,120
TO TREAT PEOPLE WITH DISABILITY

5668
03:54:33,120 --> 03:54:37,760
AND WE KNOW PEOPLE WITH

5669
03:54:37,760 --> 03:54:38,800
DISABILITIES ARE UNABLE TO

5670
03:54:38,800 --> 03:54:40,120
ACCESS HEALTHCARE SERVICE AND

5671
03:54:40,120 --> 03:54:41,400
UNDER REPRESENTED IN MEDICINE

5672
03:54:41,400 --> 03:54:45,240
AND RESEARCH.

5673
03:54:45,240 --> 03:54:46,360
THEY ARE UNDER REPRESENTED IN

5674
03:54:46,360 --> 03:54:48,200
THE STEM ACADEMIC PATHWAY

5675
03:54:48,200 --> 03:54:49,360
DROPPING LOWER AT EVERY STAGE IN

5676
03:54:49,360 --> 03:54:53,080
THAT PATHWAY.

5677
03:54:53,080 --> 03:54:54,320
I'LL TALK ABOUT HOW WE CAN USE

5678
03:54:54,320 --> 03:54:58,160
THE LAW TO DO SOMETHING ABOUT

5679
03:54:58,160 --> 03:55:01,600
IT.

5680
03:55:01,600 --> 03:55:02,920
THIS SLIDE IS LABELED THE

5681
03:55:02,920 --> 03:55:04,640
PROBLEM AND HAS A BLACKBOARD

5682
03:55:04,640 --> 03:55:07,480
FULL OF COMPLICATED MATHY

5683
03:55:07,480 --> 03:55:10,560
INDICATIONS ON IT.

5684
03:55:10,560 --> 03:55:12,160
WE SEE ABLEISM IN EVERY ASPECT

5685
03:55:12,160 --> 03:55:13,440
OF MEDICINE AND CLINICAL

5686
03:55:13,440 --> 03:55:17,600
RESEARCH FROM RECRUITMENT AND

5687
03:55:17,600 --> 03:55:22,120
ACCOMMODATIONS TO ATTITUDES

5688
03:55:22,120 --> 03:55:23,600
TOWARDS DOCTORS AND NURSE AND

5689
03:55:23,600 --> 03:55:24,920
RESEARCHERS TO INCLUSION OR

5690
03:55:24,920 --> 03:55:26,240
EXCLUSION AND DISABILITIES

5691
03:55:26,240 --> 03:55:30,320
RELATED SUBJECTS AND RESEARCH

5692
03:55:30,320 --> 03:55:31,160
AND PATIENTS TO EXCLUSION OF

5693
03:55:31,160 --> 03:55:34,880
PEOPLE WITH DISABILITY 0

5694
03:55:34,880 --> 03:55:37,920
CLINICAL TRIALS.

5695
03:55:37,920 --> 03:55:39,440
THIS SLIDE IS LABELED THE LAW

5696
03:55:39,440 --> 03:55:42,760
AND HAS A PICTURE OF A SCALES OF

5697
03:55:42,760 --> 03:55:44,200
JUSTICE AND THAT THIS WILL BE

5698
03:55:44,200 --> 03:55:54,160
THE IMAGE ON THE NEXT I'M A

5699
03:55:54,160 --> 03:55:55,600
LITTLE RIGHTS LAWYER SO PROHIBIT

5700
03:55:55,600 --> 03:55:57,240
ON THE LABEL OF DISABILITY SO

5701
03:55:57,240 --> 03:55:58,400
YOU MIGHT THINK THAT LAWS ARE

5702
03:55:58,400 --> 03:56:01,040
NOT THAT IMPORTANT BECAUSE THEY

5703
03:56:01,040 --> 03:56:02,000
DON'T CHANGEABLIST STUDENTS AND

5704
03:56:02,000 --> 03:56:04,240
THE REAL GOAL OF THESE LAWS IS

5705
03:56:04,240 --> 03:56:06,040
NOT JUST TO CHANGE THE BEHAVIOR

5706
03:56:06,040 --> 03:56:07,520
TOWARDS A PARTICULAR PERSON OR

5707
03:56:07,520 --> 03:56:08,920
GROUP WITH DISABILITIES WHICH

5708
03:56:08,920 --> 03:56:11,000
THEY DO DO IN EACH CASE, BUT TO

5709
03:56:11,000 --> 03:56:13,000
LEAD TO GREATER I AM CONCLUSION

5710
03:56:13,000 --> 03:56:13,920
OF PEOPLE WITH DISABILITIES AND

5711
03:56:13,920 --> 03:56:17,200
ALL ASPECTS OF OUR SOCIETY.

5712
03:56:17,200 --> 03:56:18,800
BECAUSE WHEN WE WORK AND STUDY

5713
03:56:18,800 --> 03:56:20,200
AND PLAY AND INTERACT WITH

5714
03:56:20,200 --> 03:56:22,080
PEOPLE WITH DISABILITIES, OUR

5715
03:56:22,080 --> 03:56:24,600
ATTITUDES AS A SOCIETY AND OUR

5716
03:56:24,600 --> 03:56:26,040
ABLEISM ARE REDUCED.

5717
03:56:26,040 --> 03:56:27,240
SO FOR EXAMPLE, THE AMERICANS

5718
03:56:27,240 --> 03:56:29,240
WITH DISABILITIES ACT, WHICH

5719
03:56:29,240 --> 03:56:30,520
I'VE BEEN ENFORCEMENT FOR ALMOST

5720
03:56:30,520 --> 03:56:32,560
THE ENTIRE TIME IT'S BEEN IN

5721
03:56:32,560 --> 03:56:33,720
EFFECT, HAS HAD THAT AFFECT.

5722
03:56:33,720 --> 03:56:35,720
WHEN I STARTED DOING THIS WORK,

5723
03:56:35,720 --> 03:56:37,160
MANY PEOPLE I TRAINED WOULD SAY

5724
03:56:37,160 --> 03:56:38,720
THEY DIDN'T KNOW ANYONE WITH A

5725
03:56:38,720 --> 03:56:39,560
DISABILITY.

5726
03:56:39,560 --> 03:56:41,160
NOW, VERY FEW PEOPLE CAN SAY

5727
03:56:41,160 --> 03:56:41,520
THAT.

5728
03:56:41,520 --> 03:56:43,280
BECAUSE THE ADA HAS CLEARED

5729
03:56:43,280 --> 03:56:47,320
PATHWPATHWAYS TO ALLOW PEOPLE OF

5730
03:56:47,320 --> 03:56:48,760
INSTITUTIONS AND OUT OF THEIR

5731
03:56:48,760 --> 03:56:50,280
HOMES INTO THE WORLD INTERACTING

5732
03:56:50,280 --> 03:56:51,560
WITH PEOPLE WITH DISABILITIES

5733
03:56:51,560 --> 03:56:53,520
REGULARLY AND I BELIEVE THAT

5734
03:56:53,520 --> 03:56:55,280
INTERACTION, IS WHAT CHANGES

5735
03:56:55,280 --> 03:56:58,400
ATTITUDES.

5736
03:56:58,400 --> 03:57:02,760
NEXT SLIDE.

5737
03:57:02,760 --> 03:57:06,360
LETLET'S TALK ABOUT THEADA.

5738
03:57:06,360 --> 03:57:12,400
DISCRIMINATION AND EMPLOYMENT

5739
03:57:12,400 --> 03:57:14,320
AND TITLE TWO DISCRIMINATION BY

5740
03:57:14,320 --> 03:57:16,320
STATE AND LOCAL GOVERNMENT

5741
03:57:16,320 --> 03:57:18,320
INCLUDING PUBLIC COLLEGES AND

5742
03:57:18,320 --> 03:57:19,760
UNIVERSITIES, PUBLIC RESEARCH

5743
03:57:19,760 --> 03:57:21,400
INSTITUTIONS AND SOCIAL SERVICE

5744
03:57:21,400 --> 03:57:23,160
PROVIDERS AND PUBLIC HOSPITALS

5745
03:57:23,160 --> 03:57:25,160
AND OTHER MEDICAL FACILITIES.

5746
03:57:25,160 --> 03:57:27,200
AND TITLE THREE, PROHIBITS

5747
03:57:27,200 --> 03:57:29,200
DISCRIMINATION BY PUBLIC

5748
03:57:29,200 --> 03:57:30,120
ACCOMMODATIONS, THAT'S 12

5749
03:57:30,120 --> 03:57:31,920
CATEGORIES OF BUSINESSES, WHICH

5750
03:57:31,920 --> 03:57:33,800
INCLUDES PRIVATE COLLEGES AND

5751
03:57:33,800 --> 03:57:34,840
UNIVERSITIES, PRIVATE SOCIAL

5752
03:57:34,840 --> 03:57:36,360
SERVICE PROVIDERS AND PRIVATE

5753
03:57:36,360 --> 03:57:38,440
MEDICAL PROVIDERS AND HOSPITALS.

5754
03:57:38,440 --> 03:57:40,560
SO TITLE 1, IS IMPORTANT HERE

5755
03:57:40,560 --> 03:57:42,480
BECAUSE IT HELPS TO ADDRESS THE

5756
03:57:42,480 --> 03:57:43,640
TRADITIONAL EXCLUSION OF PEOPLE

5757
03:57:43,640 --> 03:57:45,400
WITH DISABILITIES FROM THE RANKS

5758
03:57:45,400 --> 03:57:47,800
OF MEDICAL PROFESSIONALS AND

5759
03:57:47,800 --> 03:57:48,280
RESEARCHERS.

5760
03:57:48,280 --> 03:57:49,360
AND UNTIL PEOPLE WITH

5761
03:57:49,360 --> 03:57:52,000
DISABILITIES ARE EXCLUDED IN

5762
03:57:52,000 --> 03:57:53,160
CONCLUDED IN THOSE RANKS, WE

5763
03:57:53,160 --> 03:57:55,000
DON'T MAKE THE KIND OF PROGRESS

5764
03:57:55,000 --> 03:57:56,520
GETTING RID OF ABLEISM THAT WE

5765
03:57:56,520 --> 03:57:59,400
NEED TO BE ABLE TO MAKE.

5766
03:57:59,400 --> 03:58:01,800
TITLE ONE SAYS THAT RESEARCH

5767
03:58:01,800 --> 03:58:03,160
INSTITUTIONS, UNIVERSITIES AND

5768
03:58:03,160 --> 03:58:05,040
MEDICAL PRACTICES THAT HIRE

5769
03:58:05,040 --> 03:58:07,160
PROFESSIONALS AND RESEARCHERS,

5770
03:58:07,160 --> 03:58:08,680
CAN'T EXCLUDE PEOPLE WITH

5771
03:58:08,680 --> 03:58:10,360
DISABILITIES FROM THEIR RANKS.

5772
03:58:10,360 --> 03:58:13,840
AND CAN'T IMPOSE QUALIFICATION

5773
03:58:13,840 --> 03:58:15,040
STANDARDS THAT TEND TO EXCLUDE

5774
03:58:15,040 --> 03:58:16,560
PEOPLE WITH DISABILITIES AND THE

5775
03:58:16,560 --> 03:58:18,240
ONLY WAY THEY CAN IMPOSE

5776
03:58:18,240 --> 03:58:18,920
QUALIFICATION STANDARDS THAT

5777
03:58:18,920 --> 03:58:22,000
TEND TO EXCLUDE PEOPLE WITH

5778
03:58:22,000 --> 03:58:23,400
DISABILITIES WITH THOSE ARE VERY

5779
03:58:23,400 --> 03:58:25,200
CLEARLY JOB RELATED AND

5780
03:58:25,200 --> 03:58:27,360
NECESSARY FOR THE JOB.

5781
03:58:27,360 --> 03:58:28,960
SO, FOR EXAMPLE, A HOSPITAL

5782
03:58:28,960 --> 03:58:30,760
CAN'T REFUSE TO HIRE A NURSE,

5783
03:58:30,760 --> 03:58:32,360
BECAUSE HE HAS A SEIZURE

5784
03:58:32,360 --> 03:58:33,880
DISORDER AND DOESN'T HAVE A

5785
03:58:33,880 --> 03:58:34,360
DRIVER'S LICENSE.

5786
03:58:34,360 --> 03:58:35,400
WHEN DRIVING ISN'T AN ESSENTIAL

5787
03:58:35,400 --> 03:58:39,840
FUNCTION OF THE JOB.

5788
03:58:39,840 --> 03:58:41,160
EVEN WHEN IT'S A TRAVELING NURSE

5789
03:58:41,160 --> 03:58:42,320
POSITION, IF IF THE PERSON CAN

5790
03:58:42,320 --> 03:58:43,720
GET AROUND OTHER WAYS THAN

5791
03:58:43,720 --> 03:58:45,880
DRIVING, SUCH AS RIDE SHARES OR

5792
03:58:45,880 --> 03:58:47,160
TAXIS OR PUBLIC TRANSPORTATION,

5793
03:58:47,160 --> 03:58:51,560
THE HOSPITAL STILL CAN'T USE A

5794
03:58:51,560 --> 03:58:52,280
DRIVER'S LICENSE AS A CALL

5795
03:58:52,280 --> 03:58:52,920
CARRYING THEY'RE THINKING ABOUT

5796
03:58:52,920 --> 03:58:54,320
IT IN ONE WAY THAT YOU

5797
03:58:54,320 --> 03:58:55,520
ACCOMPLISHED THE TASK IN ONE WAY

5798
03:58:55,520 --> 03:59:00,360
WHEN IN FACT, PEOPLE ACCOMPLISH

5799
03:59:00,360 --> 03:59:01,480
THE SAME TASK IN DIFFERENT WAYS

5800
03:59:01,480 --> 03:59:02,760
SO YOU HAVE TO BE CAREFUL ABOUT

5801
03:59:02,760 --> 03:59:04,800
YOUR QUALIFICATIONS STANDARDS

5802
03:59:04,800 --> 03:59:13,000
WHEN HIRING.

5803
03:59:13,000 --> 03:59:14,440
EMPLOYERS MUST ACCOMMODATE THOSE

5804
03:59:14,440 --> 03:59:15,840
WITH DIS ACTS SO A REASONABLE

5805
03:59:15,840 --> 03:59:17,720
ACCOMMODATION CAN BE ANY CHANGE

5806
03:59:17,720 --> 03:59:19,440
THAT IS NECESSARY FOR THE PERSON

5807
03:59:19,440 --> 03:59:21,680
WITH A DISABILITY TO BE ABLE TO

5808
03:59:21,680 --> 03:59:22,520
PERFORM THE ESSENTIAL FUNCTIONS

5809
03:59:22,520 --> 03:59:26,160
OF THE JOB.

5810
03:59:26,160 --> 03:59:27,960
IT CAN'T BE AN UNDUE HARDSHIP

5811
03:59:27,960 --> 03:59:29,600
FOR THE EMPLOYER.

5812
03:59:29,600 --> 03:59:31,520
SO FOR EXAMPLE, A CLINICAL

5813
03:59:31,520 --> 03:59:33,160
RESEARCH FACILITY HAS TO ALLOW

5814
03:59:33,160 --> 03:59:35,160
AN EMPLOYEE WITH A VISION

5815
03:59:35,160 --> 03:59:36,720
IMPAIRMENT TO BRING THEIR

5816
03:59:36,720 --> 03:59:40,080
SERVICE ANIMAL TO WORK UNLESS

5817
03:59:40,080 --> 03:59:41,480
THERE'S A REASON THE ANIMAL

5818
03:59:41,480 --> 03:59:44,240
WOULD INTERFERE WITH THE

5819
03:59:44,240 --> 03:59:45,800
RESEARCH BEING DONE.

5820
03:59:45,800 --> 03:59:47,560
IT'S ENFORCEABLE BY THE PERSON

5821
03:59:47,560 --> 03:59:49,440
EXPERIENCE DISCRIMINATION AND

5822
03:59:49,440 --> 03:59:50,440
THE EQUAL EMPLOYMENT OPPORTUNITY

5823
03:59:50,440 --> 03:59:50,720
COMMISSION.

5824
03:59:50,720 --> 03:59:52,800
THE REMEDY FOR VIOLATIONS OF

5825
03:59:52,800 --> 03:59:54,200
TITLE 1 INCLUDE DAMAGES, BACK

5826
03:59:54,200 --> 03:59:56,400
PAY AND FRONT PAY, GETTING YOUR

5827
03:59:56,400 --> 03:59:58,560
ATTORNEYS FEES REIMBURSED AND

5828
03:59:58,560 --> 03:59:59,720
INJUNK TIVE RELIEF MAKING THE

5829
03:59:59,720 --> 04:00:06,120
EMPLOYER DO THE RIGHT THING.

5830
04:00:06,120 --> 04:00:07,760
NOW TITLE 2 IS IMPORTANT BECAUSE

5831
04:00:07,760 --> 04:00:11,720
IT GOVERNS HOW STATE AND LOCAL

5832
04:00:11,720 --> 04:00:13,840
MEDICAL AND RESEARCH FACILITIES

5833
04:00:13,840 --> 04:00:15,400
INTERACT WITH NON EMPLOYEES WITH

5834
04:00:15,400 --> 04:00:17,160
DISABILITIES SUCH AS PATIENTS

5835
04:00:17,160 --> 04:00:18,680
AND RESEARCH AND OTHERS AND

5836
04:00:18,680 --> 04:00:21,040
TITLE THREE, IMPOSES THE SAME

5837
04:00:21,040 --> 04:00:22,320
OBLIGATIONS ON PRIVATE MEDICAL

5838
04:00:22,320 --> 04:00:23,720
AND RESEARCH FACILITIES THAT ARE

5839
04:00:23,720 --> 04:00:26,800
OPEN TO THE PUBLIC.

5840
04:00:26,800 --> 04:00:29,400
SO TITLE THREE AND TWO PROHIBIT

5841
04:00:29,400 --> 04:00:31,960
AGAINST THE PARTICIPANTS WITH

5842
04:00:31,960 --> 04:00:33,360
DISABILITY AND SO MEDICAL

5843
04:00:33,360 --> 04:00:34,920
PROVIDERS CAN'T REFUSE TO SERVE

5844
04:00:34,920 --> 04:00:37,720
PATIENTS WITH DISABILITY, A

5845
04:00:37,720 --> 04:00:39,040
DENTIST CAN'T REFUSE A PATIENT

5846
04:00:39,040 --> 04:00:44,320
WITH HIV, A GYNECOLOGIST CAN'T

5847
04:00:44,320 --> 04:00:45,800
EXCLUDE PARTICIPANTS WITH VISION

5848
04:00:45,800 --> 04:00:49,680
DISABILITIES AND THERE ARE A FEW

5849
04:00:49,680 --> 04:00:50,760
EXCEPTIONS, IF THE PERSON WITH

5850
04:00:50,760 --> 04:00:53,040
THE DISABILITY WOULD IMPOSE A

5851
04:00:53,040 --> 04:00:54,440
DIRECT THREAT THE ANALYSIS HAS

5852
04:00:54,440 --> 04:00:58,200
TO BE BASED ON SCIENCE NOT JUST

5853
04:00:58,200 --> 04:00:59,840
COMMON BELIEFS OR PERCEPTIONS OR

5854
04:00:59,840 --> 04:01:01,120
ATTITUDES OR ASSUMPTIONS.

5855
04:01:01,120 --> 04:01:02,320
THE OTHER REASON TIME OF PERSON

5856
04:01:02,320 --> 04:01:04,080
CAN BE EXCLUDE SOLDIER IF THE

5857
04:01:04,080 --> 04:01:07,040
EXCLUSION IS NECESSARY FOR FOR

5858
04:01:07,040 --> 04:01:08,720
THE PROVISION OF THE SERVICE

5859
04:01:08,720 --> 04:01:10,800
BEING OFFERED AND IF A PERSON'S

5860
04:01:10,800 --> 04:01:12,120
DISABILITY WOULD MAKE IT

5861
04:01:12,120 --> 04:01:13,560
IMPOSSIBLE TO CONDUCT THE

5862
04:01:13,560 --> 04:01:15,360
RESEARCH OR PROVIDE THE MEDICAL

5863
04:01:15,360 --> 04:01:18,480
SERVICE, THAT PERSON CAN BE

5864
04:01:18,480 --> 04:01:20,000
EXCLUDED BUT TITLE TWO AND THREE

5865
04:01:20,000 --> 04:01:21,840
REQUIRE MEDICAL AND RESEARCH

5866
04:01:21,840 --> 04:01:24,280
FACILITIES TO REASONABLY MODIFY

5867
04:01:24,280 --> 04:01:25,600
THEIR POLICIES WHEN IT'S

5868
04:01:25,600 --> 04:01:26,800
NECESSARY TO INCLUDE A PERSON

5869
04:01:26,800 --> 04:01:29,360
WITH A DISABILITY.

5870
04:01:29,360 --> 04:01:33,080
AND ALL THEIR COMMUNICATIONS ARE

5871
04:01:33,080 --> 04:01:34,600
JUST AS EFFECTIVE AS THEIR

5872
04:01:34,600 --> 04:01:35,200
COMMUNICATIONS WITH PEOPLE

5873
04:01:35,200 --> 04:01:40,320
WITHOUT DISABILITIES.

5874
04:01:40,320 --> 04:01:41,880
EYE REASONABLE MODIFICATION CAN

5875
04:01:41,880 --> 04:01:43,800
BE ANY CHANGE IN HOW THINGS ARE

5876
04:01:43,800 --> 04:01:45,600
DONE THAT IS NECESSARY TOWN CLAD

5877
04:01:45,600 --> 04:01:50,360
A PERSON WITH A DISABILITY.

5878
04:01:50,360 --> 04:01:53,040
SO, FOR EXAMPLE, THEY MUST HAVE

5879
04:01:53,040 --> 04:01:54,000
THEIR FROM SERVING A PERSON WITH

5880
04:01:54,000 --> 04:01:56,120
A MOBILITY IMPAIRMENT WHO CAN'T

5881
04:01:56,120 --> 04:01:58,200
TRANSFER THEMSELVES ON TO AN

5882
04:01:58,200 --> 04:02:00,160
INACCESSIBLE EXAM TABLE AND THE

5883
04:02:00,160 --> 04:02:03,480
WAY THEY DO THAT IS PROVIDING AN

5884
04:02:03,480 --> 04:02:04,800
ACCESSIBLE EXAM TABLE, A LIFT TO

5885
04:02:04,800 --> 04:02:08,080
HELP THE PERSON GET UP ONTO THE

5886
04:02:08,080 --> 04:02:09,000
EXAM TABLE AND HAVING TRAINED

5887
04:02:09,000 --> 04:02:11,280
PERSONNEL TO ASSIST THE PERSON

5888
04:02:11,280 --> 04:02:12,600
WITH THE TRANSFER TO THE TABLE

5889
04:02:12,600 --> 04:02:17,240
AND THERE'S A VERY NICE PIECE ON

5890
04:02:17,240 --> 04:02:18,680
THIS FROM THE DEPARTMENT OF

5891
04:02:18,680 --> 04:02:23,400
JUSTICE AT

5892
04:02:23,400 --> 04:02:26,880
ADA.GOV/RESOURCES/MEDICAL --

5893
04:02:26,880 --> 04:02:30,120
CARE/MOBILITY.

5894
04:02:30,120 --> 04:02:31,160
EFFECTIVE COMMUNICATION IS

5895
04:02:31,160 --> 04:02:33,080
ACCOMPLISHED BY PROVIDING AID

5896
04:02:33,080 --> 04:02:34,560
AND SERVICE AND THOSE ARE THINGS

5897
04:02:34,560 --> 04:02:38,880
LIKE ACCESSIBLE FORMAT

5898
04:02:38,880 --> 04:02:40,760
MATERIALS, AND ELECTRONIC FORMAT

5899
04:02:40,760 --> 04:02:44,400
MATERIALS AND ACCESSIBLE WEB

5900
04:02:44,400 --> 04:02:45,480
SITES AND SIGN LANGUAGE

5901
04:02:45,480 --> 04:02:46,480
INTERPRETERS AND THE LIKE.

5902
04:02:46,480 --> 04:02:48,360
SO A RESEARCH FACILITY HAS TO

5903
04:02:48,360 --> 04:02:51,880
ENSURE IT'S ON-LINE INFORMATION

5904
04:02:51,880 --> 04:02:53,360
IS ACCESSIBLE AND IT FORMS THAT

5905
04:02:53,360 --> 04:02:54,800
YOU HAVE TO FILL OUT ARE

5906
04:02:54,800 --> 04:02:58,680
AVAILABLE IN ACCESSIBLE FORM A

5907
04:02:58,680 --> 04:03:00,000
USUALLY THAT'S ACCESSIBLE

5908
04:03:00,000 --> 04:03:01,280
ELECTRONIC FORMATS, NOT JUST

5909
04:03:01,280 --> 04:03:02,600
PIECES OF PAPER THAT YOU EXPECT

5910
04:03:02,600 --> 04:03:04,520
PEOPLE TO FILL OUT WITH A PEN

5911
04:03:04,520 --> 04:03:05,200
AND PAPER.

5912
04:03:05,200 --> 04:03:07,960
AND A DOCTOR FOR EXAMPLE, HAS TO

5913
04:03:07,960 --> 04:03:08,440
PROVIDE A SALE LANGUAGE

5914
04:03:08,440 --> 04:03:09,680
INTERPRETER FOR A DEAF PATIENT

5915
04:03:09,680 --> 04:03:13,480
AND BY THE WAY, COVERED ENTITY

5916
04:03:13,480 --> 04:03:14,880
CANNOT CHARGE EXTRA FOR THE

5917
04:03:14,880 --> 04:03:16,560
PROVISION OF AIDS AND SERVICES

5918
04:03:16,560 --> 04:03:18,480
EVEN IF THEY COST MORE.

5919
04:03:18,480 --> 04:03:20,160
THOSE COSTS ARE PART OF THE COST

5920
04:03:20,160 --> 04:03:24,400
OF DOING BUSINESS LIKE RENT.

5921
04:03:24,400 --> 04:03:27,240
THE DEFENSE TO REASONABLE

5922
04:03:27,240 --> 04:03:29,800
MODIFICATION ARE, UNDUE BURDEN,

5923
04:03:29,800 --> 04:03:31,440
IF IT'S AN UNDUE HARDSHIP FOR

5924
04:03:31,440 --> 04:03:33,280
THE BUSINESS OR FOR THE STATE OR

5925
04:03:33,280 --> 04:03:34,840
LOCAL GOVERNMENT OR IF IT WOULD

5926
04:03:34,840 --> 04:03:35,920
FUNDAMENTALLY ALTER THE PROGRAM

5927
04:03:35,920 --> 04:03:38,040
OR SERVICES VERY RARE THAT

5928
04:03:38,040 --> 04:03:39,360
SOMETHING WOULD FUNDAMENTALLY

5929
04:03:39,360 --> 04:03:41,840
ALTER THE PROGRAM OR SERVICE.

5930
04:03:41,840 --> 04:03:45,000
SO IT'S VERY UNUSUAL.

5931
04:03:45,000 --> 04:03:46,880
AND TITLE 2 AND TITLE 3 APPLY TO

5932
04:03:46,880 --> 04:03:49,040
PUBLIC AND PRIVATE PRIMARY AND

5933
04:03:49,040 --> 04:03:50,480
SECONDARY SCHOOLS AND PUBLIC AND

5934
04:03:50,480 --> 04:03:52,800
PRIVATE COLLEGES AND

5935
04:03:52,800 --> 04:03:54,360
UNIVERSITIES INCLUDING MEDICAL

5936
04:03:54,360 --> 04:03:55,160
SCHOOLS.

5937
04:03:55,160 --> 04:03:56,280
SO THESE CAN'T DISCRIMINATE

5938
04:03:56,280 --> 04:03:57,200
AGAINST STUDENTS WITH

5939
04:03:57,200 --> 04:03:58,680
DISABILITIES WHO WANT TO STUDY

5940
04:03:58,680 --> 04:04:00,640
THE STEM FIELDS OR WHO WANT TO

5941
04:04:00,640 --> 04:04:06,920
PRACTICE MEDICINE OR GO INTO

5942
04:04:06,920 --> 04:04:07,880
SCIENTIFIC RESEARCH THEY HAVE TO

5943
04:04:07,880 --> 04:04:12,320
ACCEPT THOSE STUDENTS AND FORT

5944
04:04:12,320 --> 04:04:13,040
ACCOMMODATE THEM.

5945
04:04:13,040 --> 04:04:15,600
THIS PROHIBITS ADDRESSES THE

5946
04:04:15,600 --> 04:04:17,240
ATTITUDES THAT PEOPLE WITH

5947
04:04:17,240 --> 04:04:19,120
DISABILITIES CAN'T SUCCEED IN

5948
04:04:19,120 --> 04:04:23,640
STEM OR MEDICAL PRACTICE OR THE

5949
04:04:23,640 --> 04:04:25,000
STUDENT THAT IF YOU CAN'T DO

5950
04:04:25,000 --> 04:04:26,160
EVERYTHING AS THE DOCTOR YOU

5951
04:04:26,160 --> 04:04:27,600
CAN'T BE A DOCTOR AT ALL.

5952
04:04:27,600 --> 04:04:32,320
IT ADDRESSES THE ASSUMPTION THAT

5953
04:04:32,320 --> 04:04:33,560
A PERSON WON'T OBTAIN THE

5954
04:04:33,560 --> 04:04:34,960
LICENSES, THE SCHOOL, FOR

5955
04:04:34,960 --> 04:04:36,360
EXAMPLE, CAN'T MAKE ITS

5956
04:04:36,360 --> 04:04:37,800
DECISIONS BASED ON ITS

5957
04:04:37,800 --> 04:04:38,640
ASSUMPTION OF WHETHER THE

5958
04:04:38,640 --> 04:04:39,840
STUDENT WILL BE ABLE TO

5959
04:04:39,840 --> 04:04:40,720
EVENTUALLY GET LICENSED.

5960
04:04:40,720 --> 04:04:42,080
AND IT NEEDS TO DEAL WITH

5961
04:04:42,080 --> 04:04:42,920
WHETHER THE STUDENT CAN

5962
04:04:42,920 --> 04:04:44,160
ACCOMPLISH THE GOALS OF THIS

5963
04:04:44,160 --> 04:04:44,600
SCHOOL.

5964
04:04:44,600 --> 04:04:49,760
AND THE EDUCATION.

5965
04:04:49,760 --> 04:04:51,080
IT REQUIRES SCHOOLS NOT TO ACT

5966
04:04:51,080 --> 04:04:53,240
ON THOSE STUDENTS AND PHYSICAL

5967
04:04:53,240 --> 04:04:54,880
ACCESSIBILITY, REASONABLE

5968
04:04:54,880 --> 04:04:56,200
MODIFICATIONS, AND EFFECTIVE

5969
04:04:56,200 --> 04:04:57,640
COMMUNICATIONS LIKE THE REST OF

5970
04:04:57,640 --> 04:04:58,800
TITLE 2 AND TITLE 3.

5971
04:04:58,800 --> 04:05:00,720
SO SCHOOLS NEED TO HAVE

5972
04:05:00,720 --> 04:05:01,440
ACCESSIBLE LABS.

5973
04:05:01,440 --> 04:05:04,440
YOU HAVE NO IDEA HOW MANY TIMES

5974
04:05:04,440 --> 04:05:06,480
I'VE HEARD THAT WE DON'T HAVE AN

5975
04:05:06,480 --> 04:05:07,760
ACCESSIBLE LAB SO THIS STUDENT

5976
04:05:07,760 --> 04:05:10,560
CAN'T BE A STUDENT HERE.

5977
04:05:10,560 --> 04:05:12,120
IT'S NOT AN EXCUSE.

5978
04:05:12,120 --> 04:05:13,600
YOU SHOULD HAVE AN ACCESSIBLE

5979
04:05:13,600 --> 04:05:14,200
LAB.

5980
04:05:14,200 --> 04:05:15,800
THE SCHOOLS HAVE TO ALLOW EXTRA

5981
04:05:15,800 --> 04:05:18,720
TIME ON TESTS FOR STUDENTS WITH

5982
04:05:18,720 --> 04:05:19,840
LEARNING DISABILITIES FOR

5983
04:05:19,840 --> 04:05:21,680
EXAMPLE AND THOSE TO MAKE THEIR

5984
04:05:21,680 --> 04:05:23,480
SCIENTIFIC STUDY MATERIALS

5985
04:05:23,480 --> 04:05:25,640
ACCESSIBLE FOR BLIND STUDENTS.

5986
04:05:25,640 --> 04:05:27,280
I KNOW MANY, MANY BLIND STUDENTS

5987
04:05:27,280 --> 04:05:30,880
WHO ARE STUDYING HIGH LEVEL STEM

5988
04:05:30,880 --> 04:05:32,600
FIELDS AND HAVING HUGE TROUBLE

5989
04:05:32,600 --> 04:05:33,760
GETTING THE MATERIALS THAT THEY

5990
04:05:33,760 --> 04:05:36,360
NEED TO STUDY FOR THOSE FIELDS

5991
04:05:36,360 --> 04:05:39,480
MADE ACCESSIBLE TO THEM.

5992
04:05:39,480 --> 04:05:41,720
NOW TITLE 2 AND TITLE 3 ARE

5993
04:05:41,720 --> 04:05:43,640
ENFORCEABLE BY THE PERSON

5994
04:05:43,640 --> 04:05:44,560
EXPERIENCING DISCRIMINATION AND

5995
04:05:44,560 --> 04:05:50,640
THE JUSTICE DEPARTMENT.

5996
04:05:50,640 --> 04:05:52,240
DAMAGES, ATTORNEY FEES AND

5997
04:05:52,240 --> 04:05:54,360
INJUNK TIVE RELIEF AND THE

5998
04:05:54,360 --> 04:05:55,840
REMEDY FOR TITLE 3 VIOLATIONS

5999
04:05:55,840 --> 04:05:59,840
ARE RELIEF AND ATTORNEY FEES YOU

6000
04:05:59,840 --> 04:06:00,800
CAN'T GET DAMAGES UNDER TITLE

6001
04:06:00,800 --> 04:06:01,960
THREE AND A COUPLE OF

6002
04:06:01,960 --> 04:06:02,880
DEVELOPMENTS ARE NOW MAKING

6003
04:06:02,880 --> 04:06:05,680
THEIR WAY THROUGH THE RUL MAKING

6004
04:06:05,680 --> 04:06:08,000
PROCESS AND UNDER THE ADA

6005
04:06:08,000 --> 04:06:09,160
INCLUDING A PROPOSED REGULATION

6006
04:06:09,160 --> 04:06:11,560
FROM THE JUSTICE DEPARTMENT ON

6007
04:06:11,560 --> 04:06:14,240
ACCESSIBILITY REQUIREMENTS FOR

6008
04:06:14,240 --> 04:06:15,360
WEB SITES AND REGULATION FROM

6009
04:06:15,360 --> 04:06:17,000
THE ACCESS BOARD ON

6010
04:06:17,000 --> 04:06:18,320
ACCESSIBILITY STANDARDS FOR

6011
04:06:18,320 --> 04:06:20,560
KIOSKS INCLUDING THE MEDICAL

6012
04:06:20,560 --> 04:06:24,160
KIOSKS THAT WE TALKED ABOUT

6013
04:06:24,160 --> 04:06:26,040
EARLIER.

6014
04:06:26,040 --> 04:06:29,080
SO ANOTHER RELATIVELY NEW LAW

6015
04:06:29,080 --> 04:06:31,480
THAT ACTS IN THE SPACE IS

6016
04:06:31,480 --> 04:06:33,680
SECTION 1557 OF THE AFFORDABLE

6017
04:06:33,680 --> 04:06:34,720
CARE ACT.

6018
04:06:34,720 --> 04:06:35,920
PROHIBITS DISCRIMINATION ON THE

6019
04:06:35,920 --> 04:06:39,240
BASIS OF DISABILITY AND OTHER

6020
04:06:39,240 --> 04:06:40,520
CHARACTERISTICS AND END TEASE

6021
04:06:40,520 --> 04:06:41,160
THAT RECEIVE GRANTS FROM THE

6022
04:06:41,160 --> 04:06:44,080
DEPARTMENT OF HEALTH AND HUMAN

6023
04:06:44,080 --> 04:06:44,880
SERVICES.

6024
04:06:44,880 --> 04:06:49,000
INCLUDING MEDICARE, CHIP OR

6025
04:06:49,000 --> 04:06:51,960
MEDICAID FUNDING AND INSURERS

6026
04:06:51,960 --> 04:06:53,680
WHO RECEIVE PREMIUM TAX CREDITS.

6027
04:06:53,680 --> 04:06:55,920
SO ENTITIES THAT GET NIH GRANTS

6028
04:06:55,920 --> 04:06:58,160
OR CDC GRANTS FOR EXAMPLE ARE

6029
04:06:58,160 --> 04:07:01,120
COVERED BY SECTION 1557

6030
04:07:01,120 --> 04:07:04,240
SPECIFICALLY AND SECTION 1557

6031
04:07:04,240 --> 04:07:05,760
EXTENDS THE TITLE 2 OBLIGATIONS

6032
04:07:05,760 --> 04:07:08,520
OF THE ADA TO ALL RECIPIENTS OF

6033
04:07:08,520 --> 04:07:09,320
HHS GRANTS.

6034
04:07:09,320 --> 04:07:10,520
REGARDLESS OF WHETHER THEY'RE A

6035
04:07:10,520 --> 04:07:13,000
PUBLIC ENTER TEE, OR A PUBLIC

6036
04:07:13,000 --> 04:07:13,520
ACCOMMODATION.

6037
04:07:13,520 --> 04:07:15,480
AND TO ENSURERS.

6038
04:07:15,480 --> 04:07:17,000
SO, SOME PRIVATE RESEARCH

6039
04:07:17,000 --> 04:07:18,160
FACILITY MIGHT BE ABLE TO ARGUE

6040
04:07:18,160 --> 04:07:19,640
THAT THEY'RE NOT COVERED BY

6041
04:07:19,640 --> 04:07:21,760
TITLE 3 OF THE ADA, BUT THEY'RE

6042
04:07:21,760 --> 04:07:24,640
CLEARLY COVERED BY SECTION 1557.

6043
04:07:24,640 --> 04:07:27,400
THE ONLY PROBLEM IS SECTION 1557

6044
04:07:27,400 --> 04:07:30,680
DOESN'T APPLY TO EMPLOYMENT.

6045
04:07:30,680 --> 04:07:35,720
IT APPLIES TO HOW WE DEAL WITH

6046
04:07:35,720 --> 04:07:45,960
PARTICIPANTS.

6047
04:07:48,280 --> 04:07:58,760
AND THE CURRENT AND SECTION 1557

6048
04:08:01,400 --> 04:08:02,880
GO SOMEWHAT BEYOND TITLE TWO OF

6049
04:08:02,880 --> 04:08:05,680
THE ADA BY REQUIRING COVERING

6050
04:08:05,680 --> 04:08:08,960
ENTITIES TO HAVE A WRITTEN

6051
04:08:08,960 --> 04:08:10,160
POLICY FOR HOW TO PROVIDE

6052
04:08:10,160 --> 04:08:11,240
EFFECTIVE COMMUNICATION AND HOW

6053
04:08:11,240 --> 04:08:13,080
THEY PROVIDE REASONABLE

6054
04:08:13,080 --> 04:08:17,080
MODIFICATION AND TO TRAIN THEIR

6055
04:08:17,080 --> 04:08:20,680
EMPLOYEES ON THE OBLIGATION BUT

6056
04:08:20,680 --> 04:08:22,400
THEY'RE NOT ENFORCED YET BUT

6057
04:08:22,400 --> 04:08:25,120
THEY WILL, 1557 CAN BE ENFORCED

6058
04:08:25,120 --> 04:08:26,640
BY THE PERSON BEING

6059
04:08:26,640 --> 04:08:27,200
DISCRIMINATED AGAINST OR THE

6060
04:08:27,200 --> 04:08:28,400
DEPARTMENT OF HEALTH AND HUMAN

6061
04:08:28,400 --> 04:08:29,560
SERVICES AND THE FEDERAL

6062
04:08:29,560 --> 04:08:30,920
GOVERNMENT IN ADDITION TO

6063
04:08:30,920 --> 04:08:37,320
ENFORCING THE LAW IN COURT, CAN

6064
04:08:37,320 --> 04:08:39,080
WITHDRAW FEDERAL FUNDS SO THAT

6065
04:08:39,080 --> 04:08:42,720
NIH GRANT COULD BE TAKEN AWAY IF

6066
04:08:42,720 --> 04:08:44,440
YOU VIOLATE SECTION 1557.

6067
04:08:44,440 --> 04:08:50,480
NEXT SLIDE, PLEASE.

6068
04:08:50,480 --> 04:08:52,880
ALMOST FINALLY, SECTION 504 OF

6069
04:08:52,880 --> 04:08:54,760
THE REHABILITATION ACT HAS BEEN

6070
04:08:54,760 --> 04:08:57,080
AROUND SINCE 1973 BUT WASN'T

6071
04:08:57,080 --> 04:08:58,960
ENFORCED MUCH UNTIL RECENTLY AND

6072
04:08:58,960 --> 04:09:00,880
IT PROHIBITS A DISCRIMINATION BY

6073
04:09:00,880 --> 04:09:02,600
ANY ENTITY THAT RECEIVES FEDERAL

6074
04:09:02,600 --> 04:09:04,600
FINANCIAL ASSISTANCE FROM ANY

6075
04:09:04,600 --> 04:09:07,640
AGENCY, NOT JUST AN HHS.

6076
04:09:07,640 --> 04:09:09,440
IT APPLIES TO TITLE 2

6077
04:09:09,440 --> 04:09:11,240
PROHIBITION TO ALL FEDERAL GRANT

6078
04:09:11,240 --> 04:09:11,960
RECIPIENTS WHETHER THE GRANTS

6079
04:09:11,960 --> 04:09:16,120
ARE FROM HHS OR ANY OTHER

6080
04:09:16,120 --> 04:09:17,480
AGENCY.

6081
04:09:17,480 --> 04:09:20,440
 IT CAN BE ENFORCED BY THE

6082
04:09:20,440 --> 04:09:22,560
FUNDING AGENCY AND IT ALLOWS FOR

6083
04:09:22,560 --> 04:09:24,360
DAMAGES ATTORNEY FEES AND INJUNK

6084
04:09:24,360 --> 04:09:25,760
TIVE RELIEF AS WELL AS

6085
04:09:25,760 --> 04:09:33,200
REVOCATION OF FEDERAL FUNDING.

6086
04:09:33,200 --> 04:09:34,160
IF YOU HAVE FUNDING FROM THE

6087
04:09:34,160 --> 04:09:37,560
DEPARTMENT OF JUSTICE OR FUNDING

6088
04:09:37,560 --> 04:09:38,880
FROM ANY AGENCY THE VIOLENCE

6089
04:09:38,880 --> 04:09:43,600
AGAINST WOMEN AGENCY, YOU CAN

6090
04:09:43,600 --> 04:09:45,120
LOOSE THAT IF YOUR

6091
04:09:45,120 --> 04:09:45,800
DISCRIMINATING AGAINST PEOPLE

6092
04:09:45,800 --> 04:09:50,600
WITH DISABILITYS SO THIS COVERS

6093
04:09:50,600 --> 04:09:51,560
MEDICARE AND AS WELL AS COLLEGE

6094
04:09:51,560 --> 04:09:53,120
THAT'S GET DEPARTMENT OF

6095
04:09:53,120 --> 04:09:55,360
EDUCATION GRANTS AND BOTH HHS

6096
04:09:55,360 --> 04:09:56,280
AND THE DEPARTMENT OF EDUCATION

6097
04:09:56,280 --> 04:09:58,080
ARE EX POCKETED TO ISSUE NEW

6098
04:09:58,080 --> 04:10:00,280
PROPOSED REGULATIONS UNDER

6099
04:10:00,280 --> 04:10:01,480
SECTION 504 LATER THIS YEAR

6100
04:10:01,480 --> 04:10:06,360
BECAUSE THOSE REGULATIONS

6101
04:10:06,360 --> 04:10:07,520
HAVEN'T BEEN UPDATE INSIDE 30

6102
04:10:07,520 --> 04:10:07,840
YEARS.

6103
04:10:07,840 --> 04:10:11,960
NEXT SLIDE, PLEASE.

6104
04:10:11,960 --> 04:10:14,200
FINALLY, REALLY NOW, SECTION 503

6105
04:10:14,200 --> 04:10:15,720
OF THE REHABILITATION ACT, THIS

6106
04:10:15,720 --> 04:10:18,320
APPLIES TO FEDERAL CONTRACTORS.

6107
04:10:18,320 --> 04:10:19,720
IF AN ENTITY DOESN'T HAVE A

6108
04:10:19,720 --> 04:10:22,960
GRANT WITH THE FEDERAL

6109
04:10:22,960 --> 04:10:26,600
GOVERNMENT BUT AWE CONTRACT IT

6110
04:10:26,600 --> 04:10:28,040
WILL PROVIDE EFFECTIVE

6111
04:10:28,040 --> 04:10:33,800
COMMUNICATION AND SO FOURTH AND

6112
04:10:33,800 --> 04:10:36,680
WITH A GOAL OF HAVING 7% OF ITS

6113
04:10:36,680 --> 04:10:40,280
WORKFORCE BE PEOPLE WITH

6114
04:10:40,280 --> 04:10:50,520
DISABILITIES.

6115
04:11:23,640 --> 04:11:25,200
VOCATIONAL REHABILITATION

6116
04:11:25,200 --> 04:11:35,760
SERVICES AND TECHNOLOGY THAT BY

6117
04:11:54,640 --> 04:11:56,480
THERE'S MORE AND THIS IS MY

6118
04:11:56,480 --> 04:11:58,000
SUNSET COLORED SLIDES SAYING

6119
04:11:58,000 --> 04:11:58,640
BEST PRACTICES.

6120
04:11:58,640 --> 04:12:00,440
THERE ARE BEST PRACTICES WE CAN

6121
04:12:00,440 --> 04:12:02,360
IMPLEMENT TO OVERCOME THIS LONG

6122
04:12:02,360 --> 04:12:03,920
HISTORY OF DISABILITY

6123
04:12:03,920 --> 04:12:05,600
DISCRIMINATION AND EXCLUSION.

6124
04:12:05,600 --> 04:12:07,040
AND IMPORTANT BEST PRACTICES

6125
04:12:07,040 --> 04:12:09,960
HERE IS AFFIRMATIVE ACTION.

6126
04:12:09,960 --> 04:12:11,520
UNLIKE IN THE RACE CONTEXT

6127
04:12:11,520 --> 04:12:12,600
THERE'S NOTHING IN THE

6128
04:12:12,600 --> 04:12:14,040
CONSTITUTION THAT LIMITS OUR

6129
04:12:14,040 --> 04:12:16,320
ABILITY TO IMPLEMENT AFFIRMATIVE

6130
04:12:16,320 --> 04:12:17,480
ACTION FOR PEOPLE WITH

6131
04:12:17,480 --> 04:12:19,240
DISABILITIES AND THIS IS IN FACT

6132
04:12:19,240 --> 04:12:23,000
A BEST PRACTICE FOR ENTITIES

6133
04:12:23,000 --> 04:12:24,760
THAT WANT TO HAVE THEIR

6134
04:12:24,760 --> 04:12:25,600
WORKFORCES REPRESENT THE

6135
04:12:25,600 --> 04:12:26,480
COMMUNITY.

6136
04:12:26,480 --> 04:12:27,600
AND AFFIRMATIVE ACTION CAN TAKE

6137
04:12:27,600 --> 04:12:29,280
THE FORM OF TARGETED OUTREACH

6138
04:12:29,280 --> 04:12:31,320
AND RECRUITING.

6139
04:12:31,320 --> 04:12:35,160
TARGETED APPRENTICESHIP AND

6140
04:12:35,160 --> 04:12:39,680
INTERNSHIP PROGRAMS AND

6141
04:12:39,680 --> 04:12:43,000
HIGHERING GOALS MAINTAINING

6142
04:12:43,000 --> 04:12:44,880
RESUMES OR CONTRACTING WITH A

6143
04:12:44,880 --> 04:12:48,560
RECRUITER THAT SPECIAL SIZES IN

6144
04:12:48,560 --> 04:12:50,600
THAT AND FAST TRACK HIGHERING

6145
04:12:50,600 --> 04:12:51,920
AUTHORITY AND IT'S UNDER

6146
04:12:51,920 --> 04:12:53,400
SCHEDULE A WHERE YOU GET TO

6147
04:12:53,400 --> 04:12:56,040
SCHOLARSHIP SOME OF THE CIVIL

6148
04:12:56,040 --> 04:12:57,560
SERVICE, REQUIRE OR SKIP THE

6149
04:12:57,560 --> 04:12:58,360
COMPETITION REQUIREMENTS IF IF

6150
04:12:58,360 --> 04:13:02,760
YOU ARE HIRING A PERSON WITH A

6151
04:13:02,760 --> 04:13:05,480
DISABILITY AND IT SAVES CERTAIN

6152
04:13:05,480 --> 04:13:06,120
REQUIREMENTS AGAIN LIKE SKIPPING

6153
04:13:06,120 --> 04:13:10,720
A CIVIL SERVICE TEST AND NOT

6154
04:13:10,720 --> 04:13:12,640
HAVING TO BARRIER TO EMPLOYMENT

6155
04:13:12,640 --> 04:13:16,040
AND INCLUDING HIRING PREVALENCES

6156
04:13:16,040 --> 04:13:18,480
LIKE POINTS PREVALENCES OR WHEN

6157
04:13:18,480 --> 04:13:21,240
THERE ARE TWO CANDIDATES THAT

6158
04:13:21,240 --> 04:13:23,720
ARE EQUAL AND AND THE DISABILITY

6159
04:13:23,720 --> 04:13:26,880
AND OR HAVING MANDATORY WHEN YOU

6160
04:13:26,880 --> 04:13:28,320
HAVE A CANDIDATE WITH A

6161
04:13:28,320 --> 04:13:28,640
DISABILITY.

6162
04:13:28,640 --> 04:13:30,120
THESE ARE SOME OF THE BEST

6163
04:13:30,120 --> 04:13:34,160
PRACTICES FOR INCREASING OUR

6164
04:13:34,160 --> 04:13:44,440
REPRESENTATION.

6165
04:13:49,520 --> 04:13:50,880
>>TERRIFIC
REPRESENTATION.

6166
04:13:50,880 --> 04:13:51,480
THANK YOU, VERY MUCH.

6167
04:13:51,480 --> 04:13:57,840
I WANT TO START BY SAYING EARLY

6168
04:13:57,840 --> 04:14:01,000
IN THE FIRST 10 MINUTES OF YOUR

6169
04:14:01,000 --> 04:14:02,760
PRESENTATION, YOU MENTIONED A

6170
04:14:02,760 --> 04:14:05,280
DOJ ADA RESOURCE CAN YOU SLOWLY

6171
04:14:05,280 --> 04:14:07,200
ARTICULATE THE WEBSITE FOR THE

6172
04:14:07,200 --> 04:14:07,440
AUDIENCE.

6173
04:14:07,440 --> 04:14:09,080
>>I WILL DO THAT AND I
WILL PUT

6174
04:14:09,080 --> 04:14:15,880
IT IN THE CHAT.

6175
04:14:15,880 --> 04:14:23,320
HOLD ON ONE SECOND.

6176
04:14:23,320 --> 04:14:28,680
IT'S WWW.ADA.GOV.

6177
04:14:28,680 --> 04:14:30,720
SO THIS IS A WEBSITE ALONE WITH

6178
04:14:30,720 --> 04:14:41,120
A LOT OF INFORMATION AN

6179
04:14:53,280 --> 04:14:59,080
AND/MEDICAL/CARE/MOBILITY.

6180
04:14:59,080 --> 04:14:59,280
OKAY?

6181
04:14:59,280 --> 04:15:03,720
>>THANK YOU.

6182
04:15:03,720 --> 04:15:06,320
>>IF ANY OF THE
TECHNOLOGY

6183
04:15:06,320 --> 04:15:09,360
PEOPLE COULD PUT THAT INTO THE

6184
04:15:09,360 --> 04:15:10,880
Q&A ANSWERS, I WOULD BE
GRATEFUL

6185
04:15:10,880 --> 04:15:12,120
BECAUSE I DON'T SEEM TO BE ABLE

6186
04:15:12,120 --> 04:15:13,080
TO DO THAT.

6187
04:15:13,080 --> 04:15:18,160
I TRIED TO.

6188
04:15:18,160 --> 04:15:20,040
SO, LET'S GET TO SOME OF THE

6189
04:15:20,040 --> 04:15:25,080
OTHER QUESTIONS THAT WE HAD.

6190
04:15:25,080 --> 04:15:29,440
THE DEFINITION OF REASONABLE

6191
04:15:29,440 --> 04:15:31,840
ACCOMMODATION AND UNDUE

6192
04:15:31,840 --> 04:15:33,000
HARDSHIP.

6193
04:15:33,000 --> 04:15:36,320
COULD YOU HELP OUR ATTENDEES

6194
04:15:36,320 --> 04:15:37,440
UNDERSTAND WHAT THAT COMES DOWN

6195
04:15:37,440 --> 04:15:37,720
TO?

6196
04:15:37,720 --> 04:15:39,920
>>SURE.

6197
04:15:39,920 --> 04:15:41,520
REASONABLE MEANS REASONABLE IN

6198
04:15:41,520 --> 04:15:43,040
THE GENERAL SENSE.

6199
04:15:43,040 --> 04:15:44,360
USUALLY IT MEANS IF YOU CAN

6200
04:15:44,360 --> 04:15:45,640
POINT TO OTHER PEOPLE WHO HAVE

6201
04:15:45,640 --> 04:15:47,080
DONE IT OTHER PLACES WHO HAVE

6202
04:15:47,080 --> 04:15:49,560
DONE THIS ACCOMMODATION OR IF

6203
04:15:49,560 --> 04:15:51,240
YOUR EMPLOYER ITSELF HAS DONE

6204
04:15:51,240 --> 04:15:52,440
THIS ACCOMMODATION IN THE PAST,

6205
04:15:52,440 --> 04:15:54,320
THEN IT'S CLEARLY REASONABLE.

6206
04:15:54,320 --> 04:15:55,520
BUT YOU CAN ALSO SHOW THAT

6207
04:15:55,520 --> 04:15:57,000
SOMETHING IS REASONABLE JUST BY

6208
04:15:57,000 --> 04:16:00,120
SHOWING THAT IT CAN BE DONE.

6209
04:16:00,120 --> 04:16:02,120
THAT IT'S NOT OUTRAGEOUS.

6210
04:16:02,120 --> 04:16:03,480
SO THAT SORT OF THE STANDARD.

6211
04:16:03,480 --> 04:16:07,960
IS IT OUTRAGEOUS.

6212
04:16:07,960 --> 04:16:10,200
IF IT'S NOT IT SHOWS IT'S AN

6213
04:16:10,200 --> 04:16:12,120
UNDUE BURDEN FOR THEM.

6214
04:16:12,120 --> 04:16:13,320
IF IT'S REASONABLE IN THE

6215
04:16:13,320 --> 04:16:15,640
GENERAL SENSE, IT HAS TO BE IN

6216
04:16:15,640 --> 04:16:21,440
ORDER FOR THEM TON DO IT AND AND

6217
04:16:21,440 --> 04:16:23,200
THEY HAVE TO SHOW WHY.

6218
04:16:23,200 --> 04:16:25,200
IT'S THEIR BURDEN TO SHOW IT'S

6219
04:16:25,200 --> 04:16:27,000
AN UNDUE BURDEN, SO IT'S

6220
04:16:27,000 --> 04:16:28,840
SWITCHING TO THEM AND THIS COMES

6221
04:16:28,840 --> 04:16:30,880
UP A LOT IN MEDICAL SCHOOL AND

6222
04:16:30,880 --> 04:16:32,040
RESIDENTS SEE AND I ACTUALLY

6223
04:16:32,040 --> 04:16:35,080
HAVE A PARTNER WHO BASICALLY

6224
04:16:35,080 --> 04:16:36,280
SPECIALIZES IN WORKING WITH

6225
04:16:36,280 --> 04:16:38,080
RESIDENTS WHO ARE BEING DENIED

6226
04:16:38,080 --> 04:16:41,280
ACCOMMODATIONS BECAUSE OF THIS

6227
04:16:41,280 --> 04:16:42,440
ATTITUDE IS THAT YOU HAVE TO BE

6228
04:16:42,440 --> 04:16:44,520
SUPER HUMAN TO BE A DOCTOR.

6229
04:16:44,520 --> 04:16:48,520
BUT IT IS NOT A BLACK AND WHITE

6230
04:16:48,520 --> 04:16:49,720
DECISION, OF COURSE,

6231
04:16:49,720 --> 04:16:50,400
UNFORTUNATELY.

6232
04:16:50,400 --> 04:16:54,440
IT ALWAYS DEPENDS ON THE

6233
04:16:54,440 --> 04:16:57,880
CIRCUMSTANCES.

6234
04:16:57,880 --> 04:16:58,360
>>GREAT.

6235
04:16:58,360 --> 04:16:59,880
THANK YOU, I'M TRYING TO READ

6236
04:16:59,880 --> 04:17:10,440
THIS QUESTION, WHICH IS LONGISH.

6237
04:17:11,720 --> 04:17:16,320
>>I UNDERSTAND FROM THE
Dr.

6238
04:17:16,320 --> 04:17:17,320
JANE COX INSTITUTIONS ARE

6239
04:17:17,320 --> 04:17:19,920
ALLOWED TO DETERMINE THEIR OPEN

6240
04:17:19,920 --> 04:17:22,120
THRESHOLDS FOR A COMPUTATIONS,

6241
04:17:22,120 --> 04:17:23,280
DOCUMENTATION.

6242
04:17:23,280 --> 04:17:25,320
INSTITUTIONS ARE INCREASINGLY

6243
04:17:25,320 --> 04:17:29,400
ABLE TO USE ONE -- USE OWNERS

6244
04:17:29,400 --> 04:17:31,720
DOCUMENT REQUIREMENTS TO DENY

6245
04:17:31,720 --> 04:17:33,240
COMBINATIONS WHILE CLAIMING THEY

6246
04:17:33,240 --> 04:17:36,440
ARE ENGAGING IN THE ADA

6247
04:17:36,440 --> 04:17:37,960
COMPLIANT ITERATIVE COMPLIANCE

6248
04:17:37,960 --> 04:17:40,040
AND SOME OF IT DATA CITED

6249
04:17:40,040 --> 04:17:42,320
EARLIER IN PEPPER SIZED

6250
04:17:42,320 --> 04:17:42,960
PRESENTATION.

6251
04:17:42,960 --> 04:17:45,680
ARE THERE PARTS OF THE ADA THAT

6252
04:17:45,680 --> 04:17:48,320
PROTECT PERSONS WITH

6253
04:17:48,320 --> 04:17:50,560
DISABILITIES FROM HAVING THEIR

6254
04:17:50,560 --> 04:17:52,520
OWN UNDUE BURDEN IMPOSED UPON

6255
04:17:52,520 --> 04:17:55,480
THEM BY THE INSTITUTIONS

6256
04:17:55,480 --> 04:17:57,560
REQUIRING DOCUMENTATION, FOR

6257
04:17:57,560 --> 04:17:59,800
EXAMPLE, CONTINUOUS NEURO

6258
04:17:59,800 --> 04:18:01,560
PSYCHIC TESTING OR CURRENT

6259
04:18:01,560 --> 04:18:03,040
QUOTE-UNQUOTE PHYSICIAN LETTERS

6260
04:18:03,040 --> 04:18:07,960
FOR A LIFELONG AND OR STABLE AND

6261
04:18:07,960 --> 04:18:09,840
WELL ESTABLISHED CONDITION.

6262
04:18:09,840 --> 04:18:11,960
>>SO THIS IS A TOUGH
QUESTION.

6263
04:18:11,960 --> 04:18:14,000
THERE'S NOTHING EXPLICIT IN THE

6264
04:18:14,000 --> 04:18:16,600
ADA THAT SAYS THAT LIMITS WHAT

6265
04:18:16,600 --> 04:18:19,080
THE ENTITY CAN REQUIRE IN ORDER

6266
04:18:19,080 --> 04:18:20,280
TO HAVE YOU DEMONSTRATE THAT YOU

6267
04:18:20,280 --> 04:18:22,840
HAVE A DISABILITY.

6268
04:18:22,840 --> 04:18:26,120
AT SOME POINT, I WOULD ARGUE CAN

6269
04:18:26,120 --> 04:18:27,680
THIS IS JUST ME ARGUING AND TAKE

6270
04:18:27,680 --> 04:18:29,120
MY LEGAL ADVISE FOR WHAT YOU

6271
04:18:29,120 --> 04:18:32,440
PAID FOR IT -- ADVICE FOR WHAT

6272
04:18:32,440 --> 04:18:33,960
YOU PAID FOR IT, BECAUSE I DON'T

6273
04:18:33,960 --> 04:18:35,360
KNOW YOUR SITUATION SUFFICIENTLY

6274
04:18:35,360 --> 04:18:37,080
TO GIVE YOU A LEGAL OPINION.

6275
04:18:37,080 --> 04:18:40,680
IN MY OPINION, SOME FOLKS COULD

6276
04:18:40,680 --> 04:18:42,960
ARGUE THAT ONCE THE BURDEN

6277
04:18:42,960 --> 04:18:45,240
BECOMES SO GREAT THAT YOU CAN'T

6278
04:18:45,240 --> 04:18:49,440
POLITICACCOMPLISH IT OR IT'S REY

6279
04:18:49,440 --> 04:18:51,200
UNNECESSARY, THEY ARE DENYING

6280
04:18:51,200 --> 04:18:53,440
YOU AN ACCOMMODATION AND YOU CAN

6281
04:18:53,440 --> 04:18:55,400
GO AND GO TO COURT AT THAT POINT

6282
04:18:55,400 --> 04:18:59,320
AND SAY, LOOK, I HAVE A

6283
04:18:59,320 --> 04:19:02,160
REASONABLE ACCOMMODATION

6284
04:19:02,160 --> 04:19:03,080
REQUEST, THEY ARE CLEARLY

6285
04:19:03,080 --> 04:19:05,040
THROWING UP UNNECESSARY BARRIERS

6286
04:19:05,040 --> 04:19:07,400
TO ME GETTING IT AND THAT'S A

6287
04:19:07,400 --> 04:19:09,080
DENIAL OF MY ACCOMMODATION AND

6288
04:19:09,080 --> 04:19:14,240
IT SHOULD BE TREATED AS AN ADA

6289
04:19:14,240 --> 04:19:19,840
VIOLATION.

6290
04:19:19,840 --> 04:19:21,160
>>UP WITH MORE QUESTION
AND

6291
04:19:21,160 --> 04:19:22,360
THEN WE NEED TO MOVE ON.

6292
04:19:22,360 --> 04:19:27,400
SO IT THIS QUARRY IS HHA GRANT

6293
04:19:27,400 --> 04:19:31,760
FUNDING UNDER THE LORNA BREEN

6294
04:19:31,760 --> 04:19:33,920
ACT SUCH AS SO-CALLED PHYSICIAN

6295
04:19:33,920 --> 04:19:35,120
HEALTH PROGRAMS WOULD BE

6296
04:19:35,120 --> 04:19:37,280
THREATENED IF SUCH A GRANTEE IS

6297
04:19:37,280 --> 04:19:40,760
NOT COMPLIANT WITH THE ADA.

6298
04:19:40,760 --> 04:19:44,280
VIA THE REHAB ACT SECTION 504.

6299
04:19:44,280 --> 04:19:45,120
>>RIGHT.

6300
04:19:45,120 --> 04:19:46,840
WHO ENFORCES THIS?

6301
04:19:46,840 --> 04:19:50,440
>>THE HHS ITSELF WILL DO
THE

6302
04:19:50,440 --> 04:19:52,240
FUNDS WITHDRAWAL AND OR THEY CAN

6303
04:19:52,240 --> 04:19:54,280
MAKE A RECOMMENDATION, A

6304
04:19:54,280 --> 04:19:55,480
REFERRAL TO THE JUSTICE

6305
04:19:55,480 --> 04:19:57,600
DEPARTMENT WHO TAKES IT TO COURT

6306
04:19:57,600 --> 04:19:59,160
AND THEN THE INDIVIDUAL CAN ALSO

6307
04:19:59,160 --> 04:20:00,120
ENFORCE IT IN COURT.

6308
04:20:00,120 --> 04:20:02,120
BUT FOR THE FUNDING WITHDRAWAL,

6309
04:20:02,120 --> 04:20:02,960
HHS WOULD DO IT.

6310
04:20:02,960 --> 04:20:05,520
THEY HAVE A PROCESS FOR DOING

6311
04:20:05,520 --> 04:20:06,320
IT.

6312
04:20:06,320 --> 04:20:07,600
>>OKAY.

6313
04:20:07,600 --> 04:20:11,280
BUT THERE ARE ADDITIONAL MODES

6314
04:20:11,280 --> 04:20:12,960
OF OR ROUTES FOR ENFORCEMENT?

6315
04:20:12,960 --> 04:20:14,040
>>YES.

6316
04:20:14,040 --> 04:20:14,600
>>GREAT.

6317
04:20:14,600 --> 04:20:15,960
>>THANK YOU.

6318
04:20:15,960 --> 04:20:19,120
>>WELL, THANK YOU,
EVERYONE,

6319
04:20:19,120 --> 04:20:22,320
FOR WONDERFUL PRESENTATIONS,

6320
04:20:22,320 --> 04:20:23,840
WONDERFUL DISCUSSION IN THIS

6321
04:20:23,840 --> 04:20:24,640
PARTICULAR PANEL.

6322
04:20:24,640 --> 04:20:27,760
WE'RE GOING TO GO AHEAD AND MOVE

6323
04:20:27,760 --> 04:20:33,280
ON NOW TO OUR CLOSING KEYNOTE

6324
04:20:33,280 --> 04:20:39,760
SPEAKER, Dr. LISA IZONNE, MD

6325
04:20:39,760 --> 04:20:42,000
AND PROFESSOR OF MEDICINE,

6326
04:20:42,000 --> 04:20:44,480
HARVARD MEDICAL SCHOOL AND BASED

6327
04:20:44,480 --> 04:20:45,800
AT MASSACHUSETTS GENERAL

6328
04:20:45,800 --> 04:20:48,880
HOSPITAL AND WHERE SHE STUDIES

6329
04:20:48,880 --> 04:20:50,080
HEALTHCARE EXPERIENCES OF

6330
04:20:50,080 --> 04:20:52,800
PERSONS WITH DISABILITIES.

6331
04:20:52,800 --> 04:20:55,400
Dr. IEZZONI IS A MEMBER OF THE

6332
04:20:55,400 --> 04:20:57,680
NATIONAL ACADEMY OF MEDICINE IN

6333
04:20:57,680 --> 04:20:59,920
THE NATIONAL ACADEMIES OF

6334
04:20:59,920 --> 04:21:02,080
SCIENCES AND ENGINEERING AND

6335
04:21:02,080 --> 04:21:02,320
MEDICINE.

6336
04:21:02,320 --> 04:21:04,800
THANK YOU, LISA, FOR BRINGING US

6337
04:21:04,800 --> 04:21:07,520
HERE AND THE CRSCENDO OF TWO

6338
04:21:07,520 --> 04:21:10,840
DAYS OF FANTASTIC PRESENTATIONS

6339
04:21:10,840 --> 04:21:12,840
AND WE'RE LOOKING FORWARD TO YOU

6340
04:21:12,840 --> 04:21:16,200
HELPING US BRING IT ALL

6341
04:21:16,200 --> 04:21:17,040
TOGETHER.

6342
04:21:17,040 --> 04:21:18,160
>>Lisa Lezzoni: NO, NO,
NO, I'M

6343
04:21:18,160 --> 04:21:19,400
NOT GOING TO DO THAT.

6344
04:21:19,400 --> 04:21:20,800
DON'T PUT TOO MUCH PRESSURE ON

6345
04:21:20,800 --> 04:21:21,160
ME.

6346
04:21:21,160 --> 04:21:23,000
LET ME GIVE YOU A VISUAL

6347
04:21:23,000 --> 04:21:24,040
DESCRIPTION, I'M OLDER WHITE

6348
04:21:24,040 --> 04:21:27,240
WOMAN WITH SHORT, CURLY GREAT

6349
04:21:27,240 --> 04:21:27,440
HAIR.

6350
04:21:27,440 --> 04:21:29,040
I'M WEARING GLASSES AND A BLUE

6351
04:21:29,040 --> 04:21:29,800
SCARF BECAUSE IT'S BOSTON AND

6352
04:21:29,800 --> 04:21:32,040
IT'S CHILLY AND I'M IN MY HOME

6353
04:21:32,040 --> 04:21:32,400
OFFICE.

6354
04:21:32,400 --> 04:21:34,720
I WANTED TO JUST SAY THIS IS

6355
04:21:34,720 --> 04:21:36,000
BEEN AN EXTRAORDINARY TWO DAYS

6356
04:21:36,000 --> 04:21:38,880
AND I WANT TO CONGRATULATE Dr.

6357
04:21:38,880 --> 04:21:40,920
CRUZ, THE ENTIRE TEAM THAT PUT

6358
04:21:40,920 --> 04:21:43,360
THIS TOGETHER AND THE SPEAKERS

6359
04:21:43,360 --> 04:21:45,520
HAVE BEEN TRULY INCREDIBLE AND

6360
04:21:45,520 --> 04:21:46,800
I'VE LEARNED A LOT BY BEING ABLE

6361
04:21:46,800 --> 04:21:51,800
TO LISTEN IN AND WHEN I WAS

6362
04:21:51,800 --> 04:22:00,800
ASKED TO BE THE FINAL KEYNOTE

6363
04:22:00,800 --> 04:22:02,480
SPEAKER, YOU ARE LEARY SO I

6364
04:22:02,480 --> 04:22:05,520
THOUGHT THAT WHAT I WOULD DO IS

6365
04:22:05,520 --> 04:22:08,120
JUST TELL STORIES ABOUT THE LATE

6366
04:22:08,120 --> 04:22:09,480
JUDY HUMAN AND Dr. CRUZ WAS

6367
04:22:09,480 --> 04:22:11,680
KIND ENOUGH TO LET ME DO THAT,

6368
04:22:11,680 --> 04:22:13,520
ALTHOUGH I KNOW THAT SHE WAS

6369
04:22:13,520 --> 04:22:14,920
INTERESTED IN MAKING SOME

6370
04:22:14,920 --> 04:22:19,240
COMMENTS ABOUT JUDY HUMAN AT THE

6371
04:22:19,240 --> 04:22:23,680
BEGINNING OF HER TIME.

6372
04:22:23,680 --> 04:22:25,920
I LIKE TO START BY SAYING THAT

6373
04:22:25,920 --> 04:22:30,320
THE TITLE OF MY TALK IS "I

6374
04:22:30,320 --> 04:22:30,800
PERSIST."

6375
04:22:30,800 --> 04:22:32,640
AND I FEEL THAT THAT IS KIND OF

6376
04:22:32,640 --> 04:22:38,240
AN EMBLEMATIC CONCLUSION TO OUR

6377
04:22:38,240 --> 04:22:40,400
TWO DAYS THAT I PERSIST AND ON

6378
04:22:40,400 --> 04:22:42,440
MY FINAL SLIDE I'M GOING TO

6379
04:22:42,440 --> 04:22:44,680
TRANSFORM INTO WE PERSIST

6380
04:22:44,680 --> 04:22:46,480
BECAUSE THIS IS A QUOTE TAKEN

6381
04:22:46,480 --> 04:22:50,000
FROM JUDY FROM HER MEMOIR ABOUT

6382
04:22:50,000 --> 04:22:52,360
HER CONCLUSION ABOUT HERSELF AND

6383
04:22:52,360 --> 04:22:56,360
HER CAREER THAT SHE PERSISTS.

6384
04:22:56,360 --> 04:22:59,120
NEXT SLIDE, PLEASE.

6385
04:22:59,120 --> 04:23:09,600
ALL RIGHT, SO, WHEN YOU TALK

6386
04:23:13,040 --> 04:23:15,000
ABOUT JUDY HUMAN HER STORY

6387
04:23:15,000 --> 04:23:17,600
REALLY STARTS WITH HER ADVOCACY

6388
04:23:17,600 --> 04:23:19,600
AROUND THE LAW AND 50 YEARS HAVE

6389
04:23:19,600 --> 04:23:21,360
PASSED SINCE THE FIRST MAJOR

6390
04:23:21,360 --> 04:23:22,800
FEDERAL DISABILITIES CIVIL

6391
04:23:22,800 --> 04:23:27,000
RIGHTS LAW SECTION 504, OF THE

6392
04:23:27,000 --> 04:23:37,520
REHABILITATION ACTED OF 1973.

6393
04:23:44,840 --> 04:23:49,560
BE EXCLUDED IN AND THE BENEFITS

6394
04:23:49,560 --> 04:24:00,080
OF AND ONE THING I FORGOT, ONE

6395
04:24:01,360 --> 04:24:03,120
OF THE THINGS ABOUT ZOOM IS YOU

6396
04:24:03,120 --> 04:24:06,240
CAN'T SEE PEOPLE WHO ARE

6397
04:24:06,240 --> 04:24:08,000
WHEELCHAIR USERS AND I'VE BEEN A

6398
04:24:08,000 --> 04:24:09,600
WHEELCHAIR USER FOR 35 YEARS AND

6399
04:24:09,600 --> 04:24:11,440
I AM REFLECTING LIVED EXPERIENCE

6400
04:24:11,440 --> 04:24:14,840
IN SOME OF MY COMMENTS OF THIS

6401
04:24:14,840 --> 04:24:19,840
SIMILAR TO JUDY'S EXPERIENCE.

6402
04:24:19,840 --> 04:24:22,840
THAT LAW PASSED IN 1973, IT'S

6403
04:24:22,840 --> 04:24:29,120
NOT QUITE 50 YEARS.

6404
04:24:29,120 --> 04:24:30,440
AND PART THAT HAVE IS BECAUSE

6405
04:24:30,440 --> 04:24:31,880
THE TWO PRESIDENTIAL

6406
04:24:31,880 --> 04:24:32,800
ADMINISTRATION THAT'S CONFRONTED

6407
04:24:32,800 --> 04:24:35,960
IT REALLY DID NOT WANT TO WRITE

6408
04:24:35,960 --> 04:24:37,760
TO IMPLEMENT IT SO I THINK THAT

6409
04:24:37,760 --> 04:24:42,240
THIS IS A VERY INTERESTING

6410
04:24:42,240 --> 04:24:44,120
CAUTIONARY TALE AT THE START OF

6411
04:24:44,120 --> 04:24:45,680
DISABILITY CIVIL RIGHTS THAT

6412
04:24:45,680 --> 04:24:47,120
NEITHER NIXSON NOR THEN THE

6413
04:24:47,120 --> 04:24:48,520
CARTER ADMINISTRATION REALLY

6414
04:24:48,520 --> 04:24:51,400
WANTED TO GET GOING ON SECTION

6415
04:24:51,400 --> 04:24:52,080
504.

6416
04:24:52,080 --> 04:24:54,800
SO, FINALLY, THE AMERICAN

6417
04:24:54,800 --> 04:24:56,360
COALITION OF CITIZENS WITH

6418
04:24:56,360 --> 04:24:58,400
DISABILITIES WHO CREATED THIS

6419
04:24:58,400 --> 04:24:59,920
CUTE LITTLE YELLOW PIN THEY WORE

6420
04:24:59,920 --> 04:25:01,320
BACK THEN, EVEN THOUGH IT DID

6421
04:25:01,320 --> 04:25:04,920
SAY HANDICAPPED HUMAN RIGHTS ON

6422
04:25:04,920 --> 04:25:07,360
IT, SAID THEY WOULD ACT IF

6423
04:25:07,360 --> 04:25:08,680
SECTION 504 REGULATIONS WERE NOT

6424
04:25:08,680 --> 04:25:12,760
SIGNED BY APRIL 5th OF 1977

6425
04:25:12,760 --> 04:25:14,600
AND JOSEPH, WHO WAS THEN

6426
04:25:14,600 --> 04:25:16,400
CARTER'S SECRETARY OF HEALTH AND

6427
04:25:16,400 --> 04:25:18,400
EDUCATION AND WELFARE, DID NOT

6428
04:25:18,400 --> 04:25:24,680
RESPOND AND SO ACCD ACTED.

6429
04:25:24,680 --> 04:25:26,440
AND ONE OF THE LEADERS OF THAT

6430
04:25:26,440 --> 04:25:27,920
ACTION WAS OF COURSE, THE LATE

6431
04:25:27,920 --> 04:25:31,480
JUDY HUMAN WHO DIED ON

6432
04:25:31,480 --> 04:25:32,120
MARCH 4th.

6433
04:25:32,120 --> 04:25:33,960
AND I TAKE PUBLIC TRANSPORTATION

6434
04:25:33,960 --> 04:25:35,080
HOME FROM MY WORKPLACE.

6435
04:25:35,080 --> 04:25:37,600
I HAVE TO TAKE A BUS AND THE

6436
04:25:37,600 --> 04:25:39,880
SUBWAY AND I WAS ON THE 86 BUS

6437
04:25:39,880 --> 04:25:42,480
WHICH GOES PAST THE GBH PUBLIC

6438
04:25:42,480 --> 04:25:44,280
TELEVISION STUDIOS ON MARKET

6439
04:25:44,280 --> 04:25:45,560
STREET IN BRIGHTON,

6440
04:25:45,560 --> 04:25:47,400
MASSACHUSETTS AND I SAW OUT OF

6441
04:25:47,400 --> 04:25:50,200
THE CORNER OF MY EYE THIS HUGE,

6442
04:25:50,200 --> 04:25:51,880
HUGE IMAGE OF JUDY.

6443
04:25:51,880 --> 04:25:54,680
NOW THIS IS THE DIGITAL MURAL

6444
04:25:54,680 --> 04:25:57,520
THE SIDE OF THE GBH STUDIOS THAT

6445
04:25:57,520 --> 04:26:00,280
GOES OVER ROUTE 90 GOING INTO

6446
04:26:00,280 --> 04:26:02,560
BOSTON MANY OF THE DIGITAL MURAL

6447
04:26:02,560 --> 04:26:03,280
IS ENVIRONMENTALLY APPROPRIATE

6448
04:26:03,280 --> 04:26:06,720
IT USES LED TECHNOLOGY BUT IT IS

6449
04:26:06,720 --> 04:26:09,960
A 35-FOOT BY 40-FOOT PICTURE AND

6450
04:26:09,960 --> 04:26:12,240
I AM SURE THAT THE LATE JUDY

6451
04:26:12,240 --> 04:26:13,360
HUMAN WHO I KNOW, WOULD HAVE

6452
04:26:13,360 --> 04:26:15,400
BEEN VERY HAPPY TO HAVE THIS

6453
04:26:15,400 --> 04:26:18,840
HUGE IMAGE OF HER DISPLAYED OVER

6454
04:26:18,840 --> 04:26:20,800
ROUTE 90 GOING INTO BOSTON.

6455
04:26:20,800 --> 04:26:25,320
SO NEXT SLIDE.

6456
04:26:25,320 --> 04:26:26,680
HERE IS WHERE JUDY COMES IN.

6457
04:26:26,680 --> 04:26:28,640
SHE WAS PART OF THE GROUP THAT

6458
04:26:28,640 --> 04:26:33,520
SAID NOPE, NOPE, EVE GOT TO GET

6459
04:26:33,520 --> 04:26:34,520
SECTION 504 IMPLEMENTED AND

6460
04:26:34,520 --> 04:26:35,880
WE'RE GOING TO PROTEST AND MAKE

6461
04:26:35,880 --> 04:26:38,040
SURE IT HAPPENS AND STARTING

6462
04:26:38,040 --> 04:26:39,880
APRIL 5th OF 1977, SHE WAS ONE

6463
04:26:39,880 --> 04:26:42,880
OF THE LEADERS OF WHAT

6464
04:26:42,880 --> 04:26:44,720
ENTITLEDDED UP BEING ALMOST A

6465
04:26:44,720 --> 04:26:46,720
MONTH-LONG SIT-IN OF A SAN

6466
04:26:46,720 --> 04:26:49,160
FRANCISCO FEDERAL BUILDING AND

6467
04:26:49,160 --> 04:26:51,680
THIS SLIDE SHOWS SOME PICTURES

6468
04:26:51,680 --> 04:26:55,680
OUTSIDE OF SOME PROTESTORS AND

6469
04:26:55,680 --> 04:26:57,600
THEN IT SHOWS PEOPLE INSIDE WITH

6470
04:26:57,600 --> 04:26:59,440
JUDY HUMAN INSIDE CORNER OF THE

6471
04:26:59,440 --> 04:27:03,160
TABLE WHO WERE PROTESTING FOR

6472
04:27:03,160 --> 04:27:04,560
THE CARTER ADMINISTRATION TO PUT

6473
04:27:04,560 --> 04:27:09,160
THE REGULATIONS FOR SECTION 504

6474
04:27:09,160 --> 04:27:10,240
INTO PLACE.

6475
04:27:10,240 --> 04:27:12,280
SO, JUDY HUMAN WAS AGAIN ONE OF

6476
04:27:12,280 --> 04:27:14,760
THE LEADERS OF ABOUT 150

6477
04:27:14,760 --> 04:27:16,120
PROTESTORS WHO STAYED FOR ALMOST

6478
04:27:16,120 --> 04:27:18,720
A MONTH INSIDE OF THIS FEDERAL

6479
04:27:18,720 --> 04:27:20,760
BUILDING AND AS SHE SAID IN HER

6480
04:27:20,760 --> 04:27:22,440
MEMOIR, AT THE START OF HER

6481
04:27:22,440 --> 04:27:24,920
DEMONSTRATION AT THE HEW OFFICES

6482
04:27:24,920 --> 04:27:27,800
OFFICIALS TREATED US WITH CON

6483
04:27:27,800 --> 04:27:29,680
DEN SENG, GIVING US COOKIES AND

6484
04:27:29,680 --> 04:27:30,800
PUNCH AS IF YOUR WORSHIP ON SOME

6485
04:27:30,800 --> 04:27:35,640
KIND OF FIELD TRIP.

6486
04:27:35,640 --> 04:27:37,440
BUT FROM BEING OPPRESSED

6487
04:27:37,440 --> 04:27:39,640
INDIVIDUALS, INTO BEING

6488
04:27:39,640 --> 04:27:40,480
EMPOWERED INDIVIDUALS.

6489
04:27:40,480 --> 04:27:42,800
WE DEMONSTRATED TO THE ENTIRE

6490
04:27:42,800 --> 04:27:45,040
NATION THAT DISABLED PEOPLE

6491
04:27:45,040 --> 04:27:46,720
WOULD TAKE CONTROL OVER OUR OWN

6492
04:27:46,720 --> 04:27:47,800
LIVES AND TAKE LEADERSHIP AND

6493
04:27:47,800 --> 04:27:52,120
THE STRUGGLE FOR EQUALITY.

6494
04:27:52,120 --> 04:27:54,080
AND JOSEPH SIGNED THE

6495
04:27:54,080 --> 04:27:55,360
REGULATIONS ON APRIL 28th,

6496
04:27:55,360 --> 04:28:01,080
WHICH TO THE DAY, SO IT'S AN

6497
04:28:01,080 --> 04:28:08,840
ANNIVERSARY IN 1977.

6498
04:28:08,840 --> 04:28:14,960
YEARS AGO FORWARD, WE HAVE THE

6499
04:28:14,960 --> 04:28:17,000
STAY OF HIS PRESIDENCY

6500
04:28:17,000 --> 04:28:19,160
JULY 26th, 1990 WHEN HE SIGNED

6501
04:28:19,160 --> 04:28:23,320
THE AMERICANS WITH DISABILITIES

6502
04:28:23,320 --> 04:28:27,400
ACT.

6503
04:28:27,400 --> 04:28:31,560
THE 88 IS A COMPLICATED LAW.

6504
04:28:31,560 --> 04:28:33,800
IT'S UNLIKE OTHER CIVIL RIGHTS

6505
04:28:33,800 --> 04:28:35,800
LAWS IN A TWO-STEP KIND OF

6506
04:28:35,800 --> 04:28:36,280
STRUCTURE.

6507
04:28:36,280 --> 04:28:38,280
FIRST YOU HAVE TO PROVE THAT YOU

6508
04:28:38,280 --> 04:28:40,440
ACTUALLY HAVE A DISABILITY AND

6509
04:28:40,440 --> 04:28:42,840
THEREFORE YOU ARE ENTITLED TO

6510
04:28:42,840 --> 04:28:46,600
PROTECTION UNDER THE ADA.

6511
04:28:46,600 --> 04:28:49,080
AND THIS REQUIRES LARGELY A

6512
04:28:49,080 --> 04:28:50,880
MEDICAL MODEL TYPE OF

6513
04:28:50,880 --> 04:28:52,760
PERSPECTIVE ON WHO QUALIFIES AS

6514
04:28:52,760 --> 04:28:55,280
DISABLED UNDER THE ADA AND WE

6515
04:28:55,280 --> 04:28:57,040
HEARD SOME GREAT TALKS AT THE

6516
04:28:57,040 --> 04:28:59,960
BEGINNING OF THE CONFERENCE

6517
04:28:59,960 --> 04:29:03,000
YESTERDAY MORNING ABOUT THE

6518
04:29:03,000 --> 04:29:05,800
SOCIAL MAUD VERSE KIND OF

6519
04:29:05,800 --> 04:29:06,960
THINKING AND THEN YOU HAVE TO

6520
04:29:06,960 --> 04:29:08,400
PROVE THAT YOU ARE INJURED OR

6521
04:29:08,400 --> 04:29:09,920
HARM BECAUSE OF ITS DIS ABILITY

6522
04:29:09,920 --> 04:29:13,640
OR FAILURE TO RECEIVE REASONABLE

6523
04:29:13,640 --> 04:29:14,840
ACCOMMODATIONS AND I WAS GLAD TO

6524
04:29:14,840 --> 04:29:16,480
HEAR YOU SAY THERE AREN'T BLACK

6525
04:29:16,480 --> 04:29:19,920
AND WHITE CRITERIA FOR A REAP

6526
04:29:19,920 --> 04:29:21,960
ABLE ACCOMMODATION OR IN FACT

6527
04:29:21,960 --> 04:29:23,360
ULTIMATELY WHO MAKES THE

6528
04:29:23,360 --> 04:29:24,000
DECISION.

6529
04:29:24,000 --> 04:29:25,760
A LOT OF THE WAY THAT I AM

6530
04:29:25,760 --> 04:29:29,640
TALKING ABOUT THIS REFLECTS IN A

6531
04:29:29,640 --> 04:29:31,680
35-YEARS OF OBSERVING WHAT IT'S

6532
04:29:31,680 --> 04:29:33,200
LIKE FOR PEOPLE WITH

6533
04:29:33,200 --> 04:29:34,960
DISABILITIES TO TRY TO GET THESE

6534
04:29:34,960 --> 04:29:37,160
KIND OF PROTECTIONS UNDER THE

6535
04:29:37,160 --> 04:29:40,360
LAW.

6536
04:29:40,360 --> 04:29:41,080
NEXT SLIDE.

6537
04:29:41,080 --> 04:29:45,160
SO THEN, OF COURSE, WE HAVE THE

6538
04:29:45,160 --> 04:29:45,880
U.S. SUPREME COURT.

6539
04:29:45,880 --> 04:29:48,320
THIS IS A PICTURE OF THE U.S.

6540
04:29:48,320 --> 04:29:50,000
SUPREME COURT WITH WILLIAM

6541
04:29:50,000 --> 04:29:51,760
RENQUEST AS THE CHIEF JUSTICE

6542
04:29:51,760 --> 04:29:53,200
BECAUSE THIS WAS A SUPREME COURT

6543
04:29:53,200 --> 04:29:55,480
IN PLACE AFTER THE ADA WAS PUT

6544
04:29:55,480 --> 04:29:57,000
IN PLACE AND IT'S THE SUPREME

6545
04:29:57,000 --> 04:29:59,480
COURT THAT BEGAN TO RATCHET DOWN

6546
04:29:59,480 --> 04:30:03,320
ON WHO WOULD QUALIFY AS DISABLED

6547
04:30:03,320 --> 04:30:04,720
AND THEREFORE GAP PROTECTION

6548
04:30:04,720 --> 04:30:09,640
UNDER THE ADA.

6549
04:30:09,640 --> 04:30:13,760
SO THEN OF COURSE WE HAD GEORGE

6550
04:30:13,760 --> 04:30:18,000
W. BUSH IN 2008 WITH HIS DAD

6551
04:30:18,000 --> 04:30:19,640
STANDING TO THE LEFT OF THIS

6552
04:30:19,640 --> 04:30:21,680
PICTURE OF HIM SURROUND BY A

6553
04:30:21,680 --> 04:30:24,240
BUNCH OF PEOPLE INCLUDING

6554
04:30:24,240 --> 04:30:25,280
SENATOR HARKIN FROM IOWA,

6555
04:30:25,280 --> 04:30:28,120
SIGNING THE ADA AMENDMENT ACT

6556
04:30:28,120 --> 04:30:30,720
THAT IF YOU LOOK AT IT USES VERY

6557
04:30:30,720 --> 04:30:33,000
MEDICAL MODEL LANGUAGE IN

6558
04:30:33,000 --> 04:30:43,880
DETERMINELANGUAGE UNDER THE ADA.

6559
04:30:44,720 --> 04:30:46,160
BUT CONSIDERABLE SUBJECTIVITY

6560
04:30:46,160 --> 04:30:47,600
STILL EXISTS AND JUDGMENTS ARE

6561
04:30:47,600 --> 04:30:50,200
MADE ON ASSUMPTIONS THAT ARE

6562
04:30:50,200 --> 04:30:52,800
POSSIBLY ERRONEOUS ABOUT THE

6563
04:30:52,800 --> 04:30:53,840
IMPACT, WHETHER SOMEONE ACTUALLY

6564
04:30:53,840 --> 04:31:00,040
HAS A DISABILITY.

6565
04:31:00,040 --> 04:31:01,880
NOW, THE REVEREND MARTIN LUTHER

6566
04:31:01,880 --> 04:31:05,080
KING JUNIOR IS A PERSON WE TURN

6567
04:31:05,080 --> 04:31:08,080
TO MAKE PRONOUNCEMENTS OF

6568
04:31:08,080 --> 04:31:08,360
TRUTHS.

6569
04:31:08,360 --> 04:31:10,320
AND AS HE SAID IN THIS TALK AT

6570
04:31:10,320 --> 04:31:12,320
THE WESTERN MICHIGAN UNIVERSITY

6571
04:31:12,320 --> 04:31:15,840
IN DECEMBER OF 1963, LEGISLATION

6572
04:31:15,840 --> 04:31:18,120
CANNOT REALLY SOLVE THE PROBLEM

6573
04:31:18,120 --> 04:31:20,400
BECAUSE YOU'VE GOT TO CHANGE THE

6574
04:31:20,400 --> 04:31:23,120
HEART AND YOU CAN'T CHANGE THE

6575
04:31:23,120 --> 04:31:24,600
HEART THROUGH LEGISLATION.

6576
04:31:24,600 --> 04:31:27,440
YOU CAN'T LEGISLATE MORALS.

6577
04:31:27,440 --> 04:31:30,200
BUT BEHAVIOR CAN BE REGULATED.

6578
04:31:30,200 --> 04:31:31,880
AND SO THEREFORE THERE'S A NEED

6579
04:31:31,880 --> 04:31:37,520
FOR CIVIL RIGHTS LEGISLATION.

6580
04:31:37,520 --> 04:31:39,280
SO WHAT I'D LIKE TO DO IN THE

6581
04:31:39,280 --> 04:31:40,480
FINAL FEW MINUTES OF MY TALK

6582
04:31:40,480 --> 04:31:43,240
WHICH IS SHORT, AS YOU CAN TELL,

6583
04:31:43,240 --> 04:31:45,920
IS I WOULD LIKE TO DRAW FROM

6584
04:31:45,920 --> 04:31:49,120
JUDY HEUMANN SOME LESSONS THAT

6585
04:31:49,120 --> 04:31:51,360
WE CAN LEARN TOWARDS ADDRESSING

6586
04:31:51,360 --> 04:31:51,800
ABLEISM.

6587
04:31:51,800 --> 04:31:53,600
WHICH IS THE TOPIC OF THE

6588
04:31:53,600 --> 04:31:57,240
CONFERENCE SO I'M GOING TO DRAW

6589
04:31:57,240 --> 04:32:00,520
FROM HER MEMOIR PUBLISHED IN

6590
04:32:00,520 --> 04:32:04,880
2000 WIN WITH CHRISTIAN JOINER.

6591
04:32:04,880 --> 04:32:06,680
AND THEN A TED TALK SHE GAVE I

6592
04:32:06,680 --> 04:32:08,680
THINK IN 2018 AND THIS IS A

6593
04:32:08,680 --> 04:32:13,960
PICTURE OF JUDY IN A BRIGHT, RED

6594
04:32:13,960 --> 04:32:14,920
SHORT-SLEEVED JACKET IN A

6595
04:32:14,920 --> 04:32:20,280
WHEELCHAIR AT THE TED TALK.

6596
04:32:20,280 --> 04:32:25,000
AND THEN I WAS PRIVILEGED ALONG

6597
04:32:25,000 --> 04:32:31,040
WITH JAVIER ROBLES TO INTERVIEW

6598
04:32:31,040 --> 04:32:32,440
JUDE FOR THE THEME ISSUE ON

6599
04:32:32,440 --> 04:32:33,560
DISABILITY THAT CAME OUT FROM

6600
04:32:33,560 --> 04:32:35,200
THE HEALTH POLICY JOURNAL,

6601
04:32:35,200 --> 04:32:39,360
HEALTH AFFAIRS, IN OCTOBER OF

6602
04:32:39,360 --> 04:32:43,760
2022 THAT INTERVIEW WAS

6603
04:32:43,760 --> 04:32:48,000
VIDEOTAPED AND IN A HALF-HOUR

6604
04:32:48,000 --> 04:32:49,240
INTERVIEW AND IT'S ON-LINE AND

6605
04:32:49,240 --> 04:32:52,960
YOU CAN LOOK AT IT AND THAT

6606
04:32:52,960 --> 04:32:54,520
ISSUE OF HEALTH AFFAIRS IS OPEN

6607
04:32:54,520 --> 04:32:58,040
ACCESS AND IT HAS REALLY JUST

6608
04:32:58,040 --> 04:32:59,960
REALLY WONDERFUL ARTICLES IN IT

6609
04:32:59,960 --> 04:33:03,800
AND IF YOU HAVEN'T LOOKED AT IT

6610
04:33:03,800 --> 04:33:04,640
YOU SHOULD.

6611
04:33:04,640 --> 04:33:08,200
SO ONE OF THE THINGS THAT JUDY

6612
04:33:08,200 --> 04:33:10,440
VERY CLEARLY SAID IN HER MEMOIR

6613
04:33:10,440 --> 04:33:12,840
WAS THAT RESEARCH INFORMS

6614
04:33:12,840 --> 04:33:14,080
ADVOCACY.

6615
04:33:14,080 --> 04:33:16,200
AND SHE HAD TO ADVOCATE, ALL OF

6616
04:33:16,200 --> 04:33:18,080
HER LIFE.

6617
04:33:18,080 --> 04:33:20,280
WHEN HER MOTHER TRIED TO ENROLL

6618
04:33:20,280 --> 04:33:21,360
HER IN KINDERGARTEN, HOW SHE WAS

6619
04:33:21,360 --> 04:33:23,680
VIEWED AS A FIRE HAZARD AND SO

6620
04:33:23,680 --> 04:33:26,800
WASN'T GOINWASN'T GOING TO BE AO

6621
04:33:26,800 --> 04:33:28,200
THE LOCAL SCHOOL, YOU NEED

6622
04:33:28,200 --> 04:33:30,120
RESEARCH TO IDENTIFY BARRIERS

6623
04:33:30,120 --> 04:33:31,160
AND DEVELOP STRATEGIES AND

6624
04:33:31,160 --> 04:33:34,960
ADDRESS THESE BARRIERS, BUT AS

6625
04:33:34,960 --> 04:33:37,680
JUDY SAID, IN HER INTERVIEW WITH

6626
04:33:37,680 --> 04:33:39,680
US, THERE'S A LACK OF SYSTEM AT

6627
04:33:39,680 --> 04:33:41,800
TECH DATA ON DISABILITY THAT

6628
04:33:41,800 --> 04:33:44,200
IMPEDES BOTH RESEARCH AND POLICY

6629
04:33:44,200 --> 04:33:46,920
MAKING AND SHE NOTED THIS WAS A

6630
04:33:46,920 --> 04:33:48,680
ESPECIALLY TRUE DURING THE

6631
04:33:48,680 --> 04:33:49,760
COVID-19 PANDEMIC THAT LEFT

6632
04:33:49,760 --> 04:33:52,480
PUBLIC-HEALTH OFFICIALS WITHOUT

6633
04:33:52,480 --> 04:33:53,600
CRITICAL INFORMATION ON

6634
04:33:53,600 --> 04:33:55,480
POPULATIONS WITH DISABILITIES

6635
04:33:55,480 --> 04:33:58,920
WHO WERE AT PARTICULAR RISK AND

6636
04:33:58,920 --> 04:34:02,760
RESEARCH ALSO COM BATS ERRONEOUS

6637
04:34:02,760 --> 04:34:05,160
ASSUMPTIONS ABOUT ABLEISM AND

6638
04:34:05,160 --> 04:34:06,160
DISABILITY THAT WE'VE HEARD SO

6639
04:34:06,160 --> 04:34:08,920
MUCH ABOUT OVER THE LAST TWO

6640
04:34:08,920 --> 04:34:09,880
DAYS.

6641
04:34:09,880 --> 04:34:12,440
SO, JUDY ALSO WAS ONE WHO WAS

6642
04:34:12,440 --> 04:34:16,560
VERY CLEAR ABOUT THE BASICS.

6643
04:34:16,560 --> 04:34:18,680
SHE NEEDED PERSONAL ASSISTANCE

6644
04:34:18,680 --> 04:34:21,880
IN HER HOME TO BE ABLE TO LIVE

6645
04:34:21,880 --> 04:34:24,560
AND FUNCTION INDEPENDENTLY AND

6646
04:34:24,560 --> 04:34:26,680
DO HER WORK.

6647
04:34:26,680 --> 04:34:28,480
SO, ONE OF THE THINGS THAT JUDY

6648
04:34:28,480 --> 04:34:30,360
WAS ACTUALLY DISAPPOINTED ABOUT

6649
04:34:30,360 --> 04:34:33,320
THE ADA WAS THAT SHE FELT IT

6650
04:34:33,320 --> 04:34:34,360
DIDN'T GO FAR ENOUGH.

6651
04:34:34,360 --> 04:34:38,840
SHE FELT THAT THE ADA IS SHOULD

6652
04:34:38,840 --> 04:34:39,560
HAVE GONE FARTHER TO REQUIRE

6653
04:34:39,560 --> 04:34:42,400
PEOPLE WITH DISABILITIES AS THE

6654
04:34:42,400 --> 04:34:43,560
CONVENTION FOR THE RIGHTS OF

6655
04:34:43,560 --> 04:34:45,440
PEOPLE WITH DISABILITIES FROM

6656
04:34:45,440 --> 04:34:48,840
THE WORLD HEALTH ORGANIZATION

6657
04:34:48,840 --> 04:34:50,720
AND ABOUT WHICH IS TALK ABOUT

6658
04:34:50,720 --> 04:34:52,840
THEIR BEING A HUMAN RIGHT TO IN

6659
04:34:52,840 --> 04:34:54,720
HOME ASSISTANCE TO ALLOW PEOPLE

6660
04:34:54,720 --> 04:34:56,680
WITH DISABILITIES WHO NEED THAT

6661
04:34:56,680 --> 04:34:59,280
KIND OF SUPPORT TO LIVE

6662
04:34:59,280 --> 04:35:00,600
INDEPENDENT LIVES AND SO WHEN

6663
04:35:00,600 --> 04:35:02,160
JUDY MOVED FROM BURKELY,

6664
04:35:02,160 --> 04:35:04,600
CALIFORNIA, TO BE THE ASSISTANT

6665
04:35:04,600 --> 04:35:05,800
SECRETARY OF THE OFFICE OF

6666
04:35:05,800 --> 04:35:07,960
SPECIAL EDUCATION, AND

6667
04:35:07,960 --> 04:35:12,680
REHABILITATION SERVICES IN THE

6668
04:35:12,680 --> 04:35:14,760
CLINTON ADDIZATION, SAYS SHE

6669
04:35:14,760 --> 04:35:16,800
SAID IN HER MEMOIR WHAT IS

6670
04:35:16,800 --> 04:35:20,480
WANTING THAN THE PROSPECT OF

6671
04:35:20,480 --> 04:35:22,840
MANAGING 400 STAFF AND

6672
04:35:22,840 --> 04:35:25,800
$10 MILLION, AN ACCESSIBLE THREE

6673
04:35:25,800 --> 04:35:28,520
BEDROOM APARTMENT AND WASHINGTON

6674
04:35:28,520 --> 04:35:31,040
D.C.

6675
04:35:31,040 --> 04:35:32,080
NEXT SLIDE.

6676
04:35:32,080 --> 04:35:33,600
AND I HAVE THE CHANCE TO TALK TO

6677
04:35:33,600 --> 04:35:35,520
HER ABOUT THIS IF THE LATE

6678
04:35:35,520 --> 04:35:39,760
SUMMER OF 2021 AS A COVID

6679
04:35:39,760 --> 04:35:41,400
PANDEMIC SIMMERED AND JUDY TOLD

6680
04:35:41,400 --> 04:35:42,960
ME SHE WAS HAVING INCREASING

6681
04:35:42,960 --> 04:35:44,760
TROUBLE FINDING IN HOME SUPPOSE

6682
04:35:44,760 --> 04:35:48,320
ORDERS AND WE FIND THAT NOW THAT

6683
04:35:48,320 --> 04:35:50,520
WITH COVID-19, I WON'T GO ON WHY

6684
04:35:50,520 --> 04:35:52,400
THIS MIGHT BE BUT THE PERSONAL

6685
04:35:52,400 --> 04:35:54,000
ASSISTANCE SERVICES WORKFORCE

6686
04:35:54,000 --> 04:35:57,520
HAS MELTED AWAY AND SOME PLACES

6687
04:35:57,520 --> 04:36:04,240
AND SO, SHE, JUDY HEUMANN THIS

6688
04:36:04,240 --> 04:36:06,240
INCREDIBLE ICONIC WORRIED HOW

6689
04:36:06,240 --> 04:36:10,560
SHE AND HER HUSBAND WOULD MANAGE

6690
04:36:10,560 --> 04:36:12,080
AT HOME.

6691
04:36:12,080 --> 04:36:13,400
JUDY ALSO RECOGNIZED THAT SHE

6692
04:36:13,400 --> 04:36:16,360
HAD MULTIPLE IDENTITIES AND FELT

6693
04:36:16,360 --> 04:36:17,760
VERY STRONGLY THAT

6694
04:36:17,760 --> 04:36:18,960
INTERSECTIONALITY WAS A CRITICAL

6695
04:36:18,960 --> 04:36:21,200
THING TO THINK ABOUT AND SHE

6696
04:36:21,200 --> 04:36:23,440
SELF-IDENTIFIED AS A WOMAN, WHO

6697
04:36:23,440 --> 04:36:27,000
WAS WHITE, A JEWISH WITH A

6698
04:36:27,000 --> 04:36:28,720
IMMIGRANT HERITAGE AND IN HER

6699
04:36:28,720 --> 04:36:30,040
GLOBAL WORK WITH A WORLD BANK

6700
04:36:30,040 --> 04:36:32,440
AND THE U.S. DEPARTMENT OF

6701
04:36:32,440 --> 04:36:34,080
STATE, SHE WITNESSED THAT THE

6702
04:36:34,080 --> 04:36:35,440
INTERSECTION IDENTITIES

6703
04:36:35,440 --> 04:36:38,480
COMPOUNDED WITH THE

6704
04:36:38,480 --> 04:36:42,080
MARGINALIZATION OF PEOPLE WITH

6705
04:36:42,080 --> 04:36:45,240
DISABILITIES.

6706
04:36:45,240 --> 04:36:46,520
NOW, WHO QUALIFIES DISABLED FOR

6707
04:36:46,520 --> 04:36:50,920
THE ADA I'VE TEED UP THAT

6708
04:36:50,920 --> 04:36:52,480
QUESTION BUT THESE QUESTIONS ARE

6709
04:36:52,480 --> 04:36:57,040
GOING TO BE INCREASINGLY, THINK,

6710
04:36:57,040 --> 04:36:58,000
RAISESSED WITH LONG COVID.

6711
04:36:58,000 --> 04:37:00,160
THERE'S BEEN A HISTORY OF

6712
04:37:00,160 --> 04:37:00,880
CONDITIONS THAT ARE NOT

6713
04:37:00,880 --> 04:37:02,800
RECOGNIZED BY MEDICAL

6714
04:37:02,800 --> 04:37:08,280
AUTHORITIES CAUSING PROBLEMS FOR

6715
04:37:08,280 --> 04:37:09,600
PEOPLE CLAIMING QUOTE-UNQUOTE

6716
04:37:09,600 --> 04:37:10,200
DISABILITY.

6717
04:37:10,200 --> 04:37:16,200
CHRONIC FATIGUE SYNDROME, FIBER

6718
04:37:16,200 --> 04:37:18,120
MYALGIA AND WHAT IS GOING TO

6719
04:37:18,120 --> 04:37:20,120
HAPPEN WITH PEOPLE WITH LONG

6720
04:37:20,120 --> 04:37:20,520
COVID?

6721
04:37:20,520 --> 04:37:23,720
ALL MY PEOPLE WITH LONG COVID

6722
04:37:23,720 --> 04:37:25,360
CHANGED THE ELIGIBILITY THINKING

6723
04:37:25,360 --> 04:37:27,160
UNDER THE ADA.

6724
04:37:27,160 --> 04:37:31,080
WE ALREADY SEE SOME BEGINNING

6725
04:37:31,080 --> 04:37:34,760
PUSH-BACK AROUND PEOPLE WITH

6726
04:37:34,760 --> 04:37:37,400
LONG-TERM COVID AND WHO HAVE

6727
04:37:37,400 --> 04:37:38,440
SYMPTOMS THAT CLEARLY FROM MY

6728
04:37:38,440 --> 04:37:40,240
POINT OF VIEW, QUALIFIES

6729
04:37:40,240 --> 04:37:44,920
DISABLED BUT FROM A MEDICAL

6730
04:37:44,920 --> 04:37:46,000
MODEL, YOU KNOW, THIS IS

6731
04:37:46,000 --> 04:37:47,120
SOMETHING WE NEED TO KEEP OUR

6732
04:37:47,120 --> 04:37:54,360
EYE ON AS WE MOVE FORWARD.

6733
04:37:54,360 --> 04:37:58,320
DESPITE WHAT YOU SAID, A LOT OF

6734
04:37:58,320 --> 04:37:59,600
DISCRIMINATION HAPPENS BEHIND

6735
04:37:59,600 --> 04:38:03,240
CLOSED DOORS AND THE PERSON WITH

6736
04:38:03,240 --> 04:38:05,800
DISABILITY MAY NOT FEEL THAT

6737
04:38:05,800 --> 04:38:08,960
THEY HAVE THE ENERGY, THE

6738
04:38:08,960 --> 04:38:13,280
KNOWLEDGE, THE MONEY TO GO

6739
04:38:13,280 --> 04:38:14,600
FORWARD AND LODGE THAT LAWSUIT

6740
04:38:14,600 --> 04:38:15,920
SO NEXT LINE, PLEASE.

6741
04:38:15,920 --> 04:38:17,840
I'D LIKE TO JUST TELL YOU A TINY

6742
04:38:17,840 --> 04:38:21,640
STORY ABOUT MYSELF.

6743
04:38:21,640 --> 04:38:24,920
I WAS A CANDIDATE FOR AN ENDOW

6744
04:38:24,920 --> 04:38:26,640
CHAIR AT A BIG PRESTIGIOUS

6745
04:38:26,640 --> 04:38:27,880
UNIVERSITY IN THE MIDWEST AND I

6746
04:38:27,880 --> 04:38:30,680
WAS REALLY EXCITED ABOUT THIS,

6747
04:38:30,680 --> 04:38:32,360
BECAUSE I'M SOMEONE WHO LIVES ON

6748
04:38:32,360 --> 04:38:34,600
SOFT MONEY AND WOULDN'T IT BE

6749
04:38:34,600 --> 04:38:36,720
AMAZING TO GET AN ENDOW CHAIR.

6750
04:38:36,720 --> 04:38:39,160
I WAS ALSO AT THAT POINT A

6751
04:38:39,160 --> 04:38:40,320
PROFESSOR AT HARVARD MEDICAL

6752
04:38:40,320 --> 04:38:42,040
SCHOOL SO I PROBABLY QUALIFIED

6753
04:38:42,040 --> 04:38:46,520
AS KIND OF HAVING SOME RESEARCH

6754
04:38:46,520 --> 04:38:47,440
CAPABILITIES.

6755
04:38:47,440 --> 04:38:49,120
AND THE INVU WAS SET FOR ME TO

6756
04:38:49,120 --> 04:38:53,320
FLY OUT THERE TO INTERVIEW FOR

6757
04:38:53,320 --> 04:38:54,280
THE ENDOW CHAIR BUT I CALLED

6758
04:38:54,280 --> 04:38:55,960
BEFORE GOING TO TALK TO THE

6759
04:38:55,960 --> 04:38:57,160
ADMINISTRATIVE ASSISTANT WHO

6760
04:38:57,160 --> 04:38:58,720
ORGANIZED ALL THE INTERVIEWS TO

6761
04:38:58,720 --> 04:39:00,920
CONFIRM, THAT THE INTERVIEW

6762
04:39:00,920 --> 04:39:04,360
LOCATIONS WOULD BE WHEELCHAIR

6763
04:39:04,360 --> 04:39:04,720
ACCESSIBLE.

6764
04:39:04,720 --> 04:39:06,240
THERE WAS A PAUSE ON THE OTHER

6765
04:39:06,240 --> 04:39:08,600
END OF THE TELEPHONE LINE AND

6766
04:39:08,600 --> 04:39:10,480
THE ADMINISTRATIVE ASSISTANT

6767
04:39:10,480 --> 04:39:13,440
SAID, WE DIDN'T KNOW YOU USED A

6768
04:39:13,440 --> 04:39:14,400
WHEELCHAIR.

6769
04:39:14,400 --> 04:39:16,440
AND SO DURING THE TWO-DAY VISIT,

6770
04:39:16,440 --> 04:39:17,720
THE PHYSICIAN WHO WAS LEADING

6771
04:39:17,720 --> 04:39:20,160
THE RECRUITMENT, RARELY LOOKED

6772
04:39:20,160 --> 04:39:23,320
ME IN THE EYE, AND DID NOT SAY

6773
04:39:23,320 --> 04:39:27,600
GOOD-BYE AT THE VISITS' END.

6774
04:39:27,600 --> 04:39:32,120
I NEVER HEART ANO HEARD ANOTHERM

6775
04:39:32,120 --> 04:39:32,320
THEM.

6776
04:39:32,320 --> 04:39:34,240
BUT IF APPROXIMATE I WAS TO

6777
04:39:34,240 --> 04:39:37,000
CLAIM DISABILITY DISCRIMINATION,

6778
04:39:37,000 --> 04:39:38,760
I WOULD SOUND LIKE A FOOL

6779
04:39:38,760 --> 04:39:40,560
SAYING, WELL, THE PERSON DIDN'T

6780
04:39:40,560 --> 04:39:42,480
LOOK ME IN THE EYE AND DIDN'T

6781
04:39:42,480 --> 04:39:44,160
SAY GOOD-BYE TO THEM.

6782
04:39:44,160 --> 04:39:46,800
I MEAN HOW WOULD I BE ABLE TO

6783
04:39:46,800 --> 04:39:50,240
PROVE THAT ANY OF THIS WAS

6784
04:39:50,240 --> 04:39:51,960
ACTUALLY DISABILITY

6785
04:39:51,960 --> 04:39:52,640
DISCRIMINATION?

6786
04:39:52,640 --> 04:39:58,120
AGAIN, BEHIND CLOSED DOORS.

6787
04:39:58,120 --> 04:40:01,080
SO AS ONE OF MY FIRST AND

6788
04:40:01,080 --> 04:40:02,640
PROBABLY 300 INTERVIEWEES THAT

6789
04:40:02,640 --> 04:40:03,920
I'VE INTERVIEWED OVER MY COURSE

6790
04:40:03,920 --> 04:40:05,600
OF DOING RESEARCH SAID TO ME,

6791
04:40:05,600 --> 04:40:09,560
DISABILITY CAN BE A LONELY

6792
04:40:09,560 --> 04:40:12,800
STATE.

6793
04:40:12,800 --> 04:40:14,960
BUT THEN LET'S GO BACK TO JUDY.

6794
04:40:14,960 --> 04:40:18,400
AS JUDY SAID IN HER MEMOIR ON

6795
04:40:18,400 --> 04:40:19,840
PAGE 156, I PERSIST.

6796
04:40:19,840 --> 04:40:21,640
I INSIST ON SPEAKING.

6797
04:40:21,640 --> 04:40:27,440
ON BEING HEARD.

6798
04:40:27,440 --> 04:40:29,880
AND AS JUDY SAID IN HER TED TALK

6799
04:40:29,880 --> 04:40:31,680
AND AGAIN THIS IS A PICTURE OF

6800
04:40:31,680 --> 04:40:37,280
HER IN HER TED TALK NEXT SLIDE.

6801
04:40:37,280 --> 04:40:37,880
PLEASE.

6802
04:40:37,880 --> 04:40:40,840
TOGETHER THAT IT HAS TO BE

6803
04:40:40,840 --> 04:40:43,080
TOGETHER WE CAN SPEAK UP FOR

6804
04:40:43,080 --> 04:40:44,360
JUSTICE.

6805
04:40:44,360 --> 04:40:48,400
TOGETHER WE CAN CHANGE THE

6806
04:40:48,400 --> 04:40:50,320
WORLD.

6807
04:40:50,320 --> 04:40:53,600
SO INSTEAD OF BEING LONELY, BACK

6808
04:40:53,600 --> 04:40:56,440
IN 1979, THE DISABILITY LAW

6809
04:40:56,440 --> 04:41:00,640
CENTER WITH JUDY HUEMANN THERE

6810
04:41:00,640 --> 04:41:02,880
AND THIS IS A BLACK AND WHITE

6811
04:41:02,880 --> 04:41:03,480
PHOTOGRAPH OF ALL THE PEOPLE

6812
04:41:03,480 --> 04:41:04,600
FROM THE DISABILITY LAW CENTER

6813
04:41:04,600 --> 04:41:07,920
AND I THINK THIS IS A COPY

6814
04:41:07,920 --> 04:41:10,800
RIGHTED PHOTO THAT I WAS ABLE TO

6815
04:41:10,800 --> 04:41:11,640
TAKE OFF THE WEB.

6816
04:41:11,640 --> 04:41:12,960
THEY ALL GOT TOGETHER AND

6817
04:41:12,960 --> 04:41:15,480
DECIDED THEY WOULD CHANGE

6818
04:41:15,480 --> 04:41:16,400
BERKELEY, CALIFORNIA, AND THEY

6819
04:41:16,400 --> 04:41:18,800
WOULD MAKE IT AN ACCESSIBLE

6820
04:41:18,800 --> 04:41:23,200
COMMUNITY TO WHICH IT STILL IS

6821
04:41:23,200 --> 04:41:25,120
TODAY.

6822
04:41:25,120 --> 04:41:27,480
SO I ALWAYS LIKE TO END MY TALKS

6823
04:41:27,480 --> 04:41:29,760
WITH INDEPENDENCE DAY AND THE

6824
04:41:29,760 --> 04:41:31,760
PLAY FOR SOMEHOW FOR US TO

6825
04:41:31,760 --> 04:41:34,400
FIGURE OUT WAYS THAT WE WON'T

6826
04:41:34,400 --> 04:41:36,880
FEEL ALONE WHEN WE CONFRONT

6827
04:41:36,880 --> 04:41:38,200
ABLEIST STUDENTS AND THAT WE

6828
04:41:38,200 --> 04:41:39,720
WILL FIND SOMEWAY TO SUPPORT

6829
04:41:39,720 --> 04:41:41,960
EACH OTHER AND MOVE THIS WAY

6830
04:41:41,960 --> 04:41:42,480
FORWARD.

6831
04:41:42,480 --> 04:41:47,320
THAT'S THE END OF MY TALK, THANK

6832
04:41:47,320 --> 04:41:52,000
YOU, VERY MUCH.

6833
04:41:52,000 --> 04:41:55,080
>>THANK YOU SO MUCH,
LISA.

6834
04:41:55,080 --> 04:41:59,640
YOU KNOW, WHEN WE THIS IS WHAT

6835
04:41:59,640 --> 04:42:04,320
I'M GOING TO DO -- JUST LISTEN

6836
04:42:04,320 --> 04:42:06,320
BECAUSE SHE KNOWS BEST AND I

6837
04:42:06,320 --> 04:42:09,160
THINK THAT TALK WAS REALLY PROOF

6838
04:42:09,160 --> 04:42:10,840
THAT YOU KNOW WHAT THIS

6839
04:42:10,840 --> 04:42:12,440
CONFERENCE NEEDED TO END WITH

6840
04:42:12,440 --> 04:42:14,080
AND I'M JUST SO PLEASED WITH IT.

6841
04:42:14,080 --> 04:42:15,120
THANK YOU SO MUCH.

6842
04:42:15,120 --> 04:42:18,280
>>YES, THANK YOU.

6843
04:42:18,280 --> 04:42:20,520
>>I'M SEEING LOTS OF

6844
04:42:20,520 --> 04:42:22,160
CONGRATULATIONS FOR YOU IN THE

6845
04:42:22,160 --> 04:42:25,920
CHAT BUT NO QUESTIONS.

6846
04:42:25,920 --> 04:42:27,640
>>I DID WANT TO SAY
SOMETHING

6847
04:42:27,640 --> 04:42:28,800
AND I SHOULD HAVE SAID THIS AT

6848
04:42:28,800 --> 04:42:31,680
THE BEGINNING, SO MANY PEOPLE

6849
04:42:31,680 --> 04:42:33,840
HAVE QUOTED OR RESEARCH THAT I

6850
04:42:33,840 --> 04:42:36,920
HAVEN'T FELT LIKE I NEEDED TO.

6851
04:42:36,920 --> 04:42:44,880
SO I WANTED TO THANK THE NICHD

6852
04:42:44,880 --> 04:42:46,280
FOR FUNDING OUR RESEARCH BECAUSE

6853
04:42:46,280 --> 04:42:48,440
IT'S BEEN TOUGH TO GET RESEARCH

6854
04:42:48,440 --> 04:42:50,080
FUNDING FOR DISABILITY RESEARCH.

6855
04:42:50,080 --> 04:42:51,040
THAT'S ANOTHER PLACE WHERE SO

6856
04:42:51,040 --> 04:42:53,320
MANY OF US HAVE FELT ALONE OVER

6857
04:42:53,320 --> 04:42:55,560
THE YEARS AND SO Dr. CRUZ, I

6858
04:42:55,560 --> 04:42:56,720
WANT TO THANK YOU FOR ALL THAT

6859
04:42:56,720 --> 04:42:58,360
YOU HAVE DONE TO SUPPORT OUR

6860
04:42:58,360 --> 04:42:59,440
RESEARCH GOING FORWARD.

6861
04:42:59,440 --> 04:43:00,360
THANK YOU.

6862
04:43:00,360 --> 04:43:04,600
>>THANK YOU FOR DOING THE
HARD

6863
04:43:04,600 --> 04:43:05,200
WORK.

6864
04:43:05,200 --> 04:43:05,960
ALL RIGHT.

6865
04:43:05,960 --> 04:43:07,040
WE'RE GOING TO END IT AND I'M

6866
04:43:07,040 --> 04:43:11,400
GOING TO TRY TO BRING IT ALL

6867
04:43:11,400 --> 04:43:15,880
TOGETHER.

6868
04:43:15,880 --> 04:43:19,160
WE'VE HAD SEVERAL QUESTIONS

6869
04:43:19,160 --> 04:43:21,760
ABOUT NIH, THIS WAS GREAT, IT'S

6870
04:43:21,760 --> 04:43:23,120
ABOUT TIME.

6871
04:43:23,120 --> 04:43:25,720
BETTER LATE THAN NEVER, BUT WHAT

6872
04:43:25,720 --> 04:43:28,520
ARE YOU GOING TO DO NOW?

6873
04:43:28,520 --> 04:43:35,720
THIS WAS GOOD BUT WHAT COMES

6874
04:43:35,720 --> 04:43:41,640
NEXT?

6875
04:43:41,640 --> 04:43:43,640
SO I WILL START IMMEDIATELY AND

6876
04:43:43,640 --> 04:43:47,000
THEN MOVE ON WITH TIME SO MOST

6877
04:43:47,000 --> 04:43:47,680
IMMEDIATELY.

6878
04:43:47,680 --> 04:43:50,440
THE NIH VIDEO CAST WEBSITE WILL

6879
04:43:50,440 --> 04:43:53,280
POST TO THE RECORDING OF

6880
04:43:53,280 --> 04:43:54,040
YESTERDAY'S AND TODAY.

6881
04:43:54,040 --> 04:43:55,840
SO YOU MIGHT NOT REALIZE THIS IS

6882
04:43:55,840 --> 04:43:57,520
BEEN STREAMING THROUGH THE NIH

6883
04:43:57,520 --> 04:44:00,280
VIDEO CAST AND WE'VE HAD ANOTHER

6884
04:44:00,280 --> 04:44:03,120
20 TO 30 PEOPLE LOGGING IN THAT

6885
04:44:03,120 --> 04:44:03,800
WAY.

6886
04:44:03,800 --> 04:44:05,760
SO NEXT WEEK, IT GENERALLY TAKES

6887
04:44:05,760 --> 04:44:06,960
ABOUT THREE TO FIVE BUSINESS

6888
04:44:06,960 --> 04:44:08,640
DAYS FOR THOSE RECORDINGS TO

6889
04:44:08,640 --> 04:44:09,120
POST.

6890
04:44:09,120 --> 04:44:11,160
SO WE'VE HAD A LOT OF REQUESTS

6891
04:44:11,160 --> 04:44:12,960
FOR RECORDINGS OF THIS.

6892
04:44:12,960 --> 04:44:14,360
THAT WILL BE PUBLICLY AVAILABLE.

6893
04:44:14,360 --> 04:44:16,120
YOU DON'T NEED TO REGISTER OR DO

6894
04:44:16,120 --> 04:44:16,480
ANYTHING.

6895
04:44:16,480 --> 04:44:19,560
IT'S ON THE NIH VIDEO CAST PAST

6896
04:44:19,560 --> 04:44:22,040
EVENTS WEBSITE.

6897
04:44:22,040 --> 04:44:26,280
I'M GOING TO CONFIRM WITH THE

6898
04:44:26,280 --> 04:44:28,080
SPEAKERS, WHICH PARTS OF THEIR

6899
04:44:28,080 --> 04:44:29,320
PRESENTATIONS WITH BE SHARED

6900
04:44:29,320 --> 04:44:30,000
WIDELY.

6901
04:44:30,000 --> 04:44:33,120
WE SAW UNPUBLISHED DATA AND

6902
04:44:33,120 --> 04:44:35,360
PERSONAL THINGS AND THEY MAY NOT

6903
04:44:35,360 --> 04:44:37,040
WANT IT ALL SHARED AND I RESPECT

6904
04:44:37,040 --> 04:44:37,560
THAT.

6905
04:44:37,560 --> 04:44:39,680
SO I'M GOING TO CONFIRM WITH

6906
04:44:39,680 --> 04:44:42,400
THEM WHAT CAN AND CANNOT BE

6907
04:44:42,400 --> 04:44:42,880
SHARED.

6908
04:44:42,880 --> 04:44:45,040
SOME OF THE PRESENTATIONS HAVE

6909
04:44:45,040 --> 04:44:47,800
NOT BEEN FULLY REMEDIATED FOR

6910
04:44:47,800 --> 04:44:49,000
ACCESSIBILITY SO WE ALSO NEED

6911
04:44:49,000 --> 04:44:51,360
SOME TIME TO MAKE SURE THOSE ARE

6912
04:44:51,360 --> 04:44:53,360
IN A FORM TA WE CAN DISTRIBUTE.

6913
04:44:53,360 --> 04:44:55,200
SO YOU WILL BE GETTING, ANYONE

6914
04:44:55,200 --> 04:44:57,080
WHO REGISTERED, YOU BE GETTING

6915
04:44:57,080 --> 04:44:59,400
AN E-MAIL FROM ME.

6916
04:44:59,400 --> 04:45:01,080
GIVE ME A FEW WEEKS TO MAKE SURE

6917
04:45:01,080 --> 04:45:04,480
I GET ALL THAT ACCESSIBILITY

6918
04:45:04,480 --> 04:45:05,760
SQUARED AWAY.

6919
04:45:05,760 --> 04:45:07,200
SO, IN THAT E-MAIL, YOU WILL

6920
04:45:07,200 --> 04:45:09,360
HAVE THE LINKS, IF I CAN GET IT

6921
04:45:09,360 --> 04:45:10,640
TOGETHER WE'LL HAVE THE SURVEY,

6922
04:45:10,640 --> 04:45:12,040
BECAUSE I WANT SOME MORE

6923
04:45:12,040 --> 04:45:17,880
FEEDBACK FROM YOU, AND THEN

6924
04:45:17,880 --> 04:45:21,760
WE'LL HAVE THE PRESENTATIONS.

6925
04:45:21,760 --> 04:45:27,440
SPEAKING OF E-MAILS, I'M SORRY,

6926
04:45:27,440 --> 04:45:28,840
THAT NOISE.

6927
04:45:28,840 --> 04:45:31,480
I WRITE A NEWSLETTER EVERY

6928
04:45:31,480 --> 04:45:32,080
COUPLE WEEKS.

6929
04:45:32,080 --> 04:45:34,400
THAT'S HOW I INFORM PEOPLE ABOUT

6930
04:45:34,400 --> 04:45:36,920
WHAT IS GOING ON AT NIH IN

6931
04:45:36,920 --> 04:45:38,800
REHABILITATION RESEARCH.

6932
04:45:38,800 --> 04:45:43,160
SO, I NOW HAVE 500 NEW FRIENDS.

6933
04:45:43,160 --> 04:45:45,680
SO YOU WILL SEE ME IN YOUR INBOX

6934
04:45:45,680 --> 04:45:46,720
EVERY COUPLE WEEKS IF IF YOU

6935
04:45:46,720 --> 04:45:48,400
DON'T WANT ME THERE, JUST CLICK

6936
04:45:48,400 --> 04:45:49,800
THE UNSUBSCRIBE AND I'LL GO

6937
04:45:49,800 --> 04:45:50,160
AWAY.

6938
04:45:50,160 --> 04:45:52,440
BUT THAT'S HOW I COMMUNICATE AND

6939
04:45:52,440 --> 04:45:53,720
WE'LL LET YOU GUYS KNOW ABOUT

6940
04:45:53,720 --> 04:45:59,320
WHAT IS GOING ON FOLLOWING THIS

6941
04:45:59,320 --> 04:46:00,400
CONFERENCE.

6942
04:46:00,400 --> 04:46:00,760
MIDTERMS STEPS.

6943
04:46:00,760 --> 04:46:04,280
NIH IS A RESOURCE ORGANIZATION

6944
04:46:04,280 --> 04:46:05,640
WE'VE HEARD A LOT OF AREAS WHERE

6945
04:46:05,640 --> 04:46:09,520
WE NEED TO DO MORE RESEARCH.

6946
04:46:09,520 --> 04:46:11,680
SO, BEFORE WE PUT OUT TARGETED

6947
04:46:11,680 --> 04:46:14,040
NOTICES OF FUNDING

6948
04:46:14,040 --> 04:46:15,960
OPPORTUNITIES, YOU MIGHT HEAR

6949
04:46:15,960 --> 04:46:19,000
THE TERM NOFO AND NOTICE OF

6950
04:46:19,000 --> 04:46:19,720
FUNDING OPPORTUNITY.

6951
04:46:19,720 --> 04:46:21,840
IT'S WHAT WE'RE CALLING FOAs

6952
04:46:21,840 --> 04:46:22,200
NOW.

6953
04:46:22,200 --> 04:46:24,080
WE HAVE TO CLEAR THAT CONCEPT

6954
04:46:24,080 --> 04:46:26,640
WITH AN ADVISORY BOARD OR A

6955
04:46:26,640 --> 04:46:27,400
COUNCIL.

6956
04:46:27,400 --> 04:46:29,720
SO LAST YEAR, I CLEARED A

6957
04:46:29,720 --> 04:46:31,840
CONCEPT FOR ABLEISM AT THE

6958
04:46:31,840 --> 04:46:33,280
NATIONAL ADVISORY BOARD FOR

6959
04:46:33,280 --> 04:46:36,600
MEDICAL REHABILITATION RESEARCH.

6960
04:46:36,600 --> 04:46:39,120
YOU WILL BE SEEING MORE FROM

6961
04:46:39,120 --> 04:46:40,680
NCMRR FROM ME, THE BUCK STOPS

6962
04:46:40,680 --> 04:46:42,680
HERE, ON ABLEISM.

6963
04:46:42,680 --> 04:46:44,600
THE OTHER THING I WANTED TO LET

6964
04:46:44,600 --> 04:46:46,520
YOU KNOWS IS THAT THE NATIONAL

6965
04:46:46,520 --> 04:46:48,040
INSTITUTE ON MINORITY HEALTH AND

6966
04:46:48,040 --> 04:46:50,760
HEALTH DISPARITY COUNCIL CLEARED

6967
04:46:50,760 --> 04:46:53,040
A CONCEPT THAT'S VERY RELATED TO

6968
04:46:53,040 --> 04:46:55,200
IT CONFERENCE AND IT'S THE

6969
04:46:55,200 --> 04:46:57,920
INTERSECTION OF DISABILITY WITH

6970
04:46:57,920 --> 04:47:00,160
OTHER MARGINALIZED IDENTITIES

6971
04:47:00,160 --> 04:47:02,240
SO, RACIAL AND ETHNIC MINORITY,

6972
04:47:02,240 --> 04:47:04,280
SEXUAL GENDER MINORITY, RURAL

6973
04:47:04,280 --> 04:47:05,000
POPULATION, ET CETERA.

6974
04:47:05,000 --> 04:47:08,760
SO MORE TO COME THERE.

6975
04:47:08,760 --> 04:47:11,440
AND NIH PLANNING COMMITTEE.

6976
04:47:11,440 --> 04:47:13,360
WE'RE GOING TO PULL THIS

6977
04:47:13,360 --> 04:47:13,640
TOGETHER.

6978
04:47:13,640 --> 04:47:15,360
WORE GOING TO PUT TOGETHER A

6979
04:47:15,360 --> 04:47:15,840
PAPER.

6980
04:47:15,840 --> 04:47:17,960
HAVE A JOURNAL IN MIND.

6981
04:47:17,960 --> 04:47:19,160
HOPEFULLY WE CAN GET IT OUT

6982
04:47:19,160 --> 04:47:19,520
THERE.

6983
04:47:19,520 --> 04:47:21,720
BUT AT A MINIMUM, THERE WILL BE

6984
04:47:21,720 --> 04:47:24,280
A SUMMARY OF THIS MEETING

6985
04:47:24,280 --> 04:47:25,360
PUBLISHED ON OUR WELCOME BACK

6986
04:47:25,360 --> 04:47:29,000
SWEBSITE SO YOUWILL HAVE SOMETHO

6987
04:47:29,000 --> 04:47:30,280
REFERENCE.

6988
04:47:30,280 --> 04:47:36,360
I THINK THE LONGER TERM ISSUE

6989
04:47:36,360 --> 04:47:39,440
AND THE ELEPHANT IN THE ROOM IS

6990
04:47:39,440 --> 04:47:42,720
THE ACD RECOMMENDATIONS.

6991
04:47:42,720 --> 04:47:45,560
SO, WHAT I CAN TELL YOU IS THAT

6992
04:47:45,560 --> 04:47:47,680
NIH LEADERSHIP IS SETTING UP

6993
04:47:47,680 --> 04:47:50,920
STRUCTURES TO RESPOND TO THOSE

6994
04:47:50,920 --> 04:47:52,120
RECOMMENDATIONS AND KEY LEADERS

6995
04:47:52,120 --> 04:47:57,440
HAVE BEEN IDENTIFIED.

6996
04:47:57,440 --> 04:47:59,080
I AND OTHERS MEMBERS OF THE

6997
04:47:59,080 --> 04:48:00,680
PLANNING COMMITTEE HAVE BEEN IN

6998
04:48:00,680 --> 04:48:02,080
CONVERSATIONS WITH THOSE

6999
04:48:02,080 --> 04:48:02,560
LEADERS.

7000
04:48:02,560 --> 04:48:06,680
WE'VE DIRECTED THEM TO THIS

7001
04:48:06,680 --> 04:48:07,600
WORKSHOP.

7002
04:48:07,600 --> 04:48:11,040
SO, YOU KNOW, THINGS ARE

7003
04:48:11,040 --> 04:48:13,120
HAPPENING.

7004
04:48:13,120 --> 04:48:14,760
MY HOPE THAT WE WILL BE ABLE TO

7005
04:48:14,760 --> 04:48:16,680
HAVE ONE OF THOSE LEADERS SPEAK

7006
04:48:16,680 --> 04:48:19,960
AT NCMRR'S ADVISORY BOARD IN

7007
04:48:19,960 --> 04:48:22,920
DECEMBER SO ROUGHLY A YEAR AFTER

7008
04:48:22,920 --> 04:48:25,840
THE RECOMMENDATIONS TO GIVE AN

7009
04:48:25,840 --> 04:48:29,120
UPDATE ON WHERE THOSE

7010
04:48:29,120 --> 04:48:29,840
RECOMMENDATIONS ARE.

7011
04:48:29,840 --> 04:48:31,720
I REALIZE THAT'S NOT A PERFECT

7012
04:48:31,720 --> 04:48:33,000
VENUE BUT IT'S THE ONE I HAVE

7013
04:48:33,000 --> 04:48:34,320
INFLUENCE OVER AND I GET TO SET

7014
04:48:34,320 --> 04:48:36,200
THE AGENDA SO IF I'M GOING TO

7015
04:48:36,200 --> 04:48:38,120
USE IT FOR WHAT I THINK WE

7016
04:48:38,120 --> 04:48:39,400
SHOULD USE IT FOR.

7017
04:48:39,400 --> 04:48:47,040
SO, IN CLOSING, JUST ANOTHER

7018
04:48:47,040 --> 04:48:48,400
HUGE, HUGE THANK YOU TO THE

7019
04:48:48,400 --> 04:48:49,800
SPEAKERS, THE AUDIENCE, THE

7020
04:48:49,800 --> 04:48:52,720
PLANNING COMMITTEE AND ALL THE

7021
04:48:52,720 --> 04:48:54,280
LOGISTICS SUPPORT AND THE PEOPLE

7022
04:48:54,280 --> 04:48:55,800
BEHIND THE SCENES MAKING THIS

7023
04:48:55,800 --> 04:48:57,000
HAPPEN AND YOU KNOW, I HAD A

7024
04:48:57,000 --> 04:48:58,520
FEELING THIS WAS GOING TO BE A

7025
04:48:58,520 --> 04:49:01,520
REALLY GOOD MEETING BUT IT IS

7026
04:49:01,520 --> 04:49:03,600
JUST EVEN EXCEEDED MY

7027
04:49:03,600 --> 04:49:04,800
EXPECTATIONS.

7028
04:49:04,800 --> 04:49:07,280
SO, THANK YOU SO MUCH.

7029
04:49:07,280 --> 04:49:09,200
BE SAFE.

7030
04:49:09,200 --> 04:49:12,000
AND YOU WILL HEAR MORE FROM US.

7031
04:49:12,000 --> 04:49:12,560
THANK YOU.

7032
04:49:12,560 --> 04:49:22,640
BYE.