>>WELCOME, GOOD MORNING. MY
NAME IS CHRISTOPHER DONAHUE. MY
NAME IS CHRISTOPHER DONAHUE
SENIOR HISTORIAN AT THE THE
NATIONAL GENOME INSTITUTE, WHERE
I CO-LEAD THE GENOMICS PROGRAM
IN THE OFFICE OF COMMUNICATIONS.
I'M A WHITE MAN WITH GLASSES,
BLUE EYES AND REDDISH BROWN
HAIR. AND I HAVE A PHYSICAL
VISIBLE DISABILITY CEREBRAL
PALSY. I'M ALSO WEARING A BLUE
AND WHITE STRIPED DRESS SHIRT.
FIRSTLY I WANT TO ACKNOWLEDGE
THE EFFORTS OF THE NATIONAL
CENTER FOR MEDICAL
REHABILITATION RESEARCH. NCMRR.
ITS DIRECTOR THERESA CRUZ, DR.
THERESA CRUZ AS WELL AS NATIONAL
INSTITUTES OF HEALTH. THE
PLANNING COMMITTEE FOR THIS
SYMPOSIUM, AND OUR AMAZING
SPEAKERS AND PANELISTS. THOUGH
I CANNOT DO JUSTICE TO THE
COMPLEXITY AND RICHNESS AND
IMPORTANCE OF YESTERDAY'S
PRESENTATIONS, I WANT TO
ACKNOWLEDGE THE GRAVITY OF OUR
DISCUSSION ABOUT ABLEISM THE
PROFOUND DISPARITIES IN ACCESS
TO CARE AND THE BARRIERS
DISABLED PEOPLE FACE NOT ONLY
MEDICAL CONTEXT BUT EVERY DAY
LIVES. AS WE DISCUSSED IN
DEVASTATING DETAIL YESTERDAY,
ABLEISM IN ALL ITS FORMS IS THE
DEVALUATION AND DEHUMANIZATION
OF DISABLED LIVES OVER THOSE NOT
VIEWED AS DISABLED. ABLEISM
LIKE RACISM AND HETERO
NORMATIVETY IS EMBEDDED IN MANY
OF OUR EVERY DAY INTERACTIONS
AND IN THE VERY STRUCTURES OF
SOCIETY. ABLEISM AND BIAS
AGAINST PEOPLE WITH DISABILITIES
CANNOT IN ANY WAY BE SEPARATED
FROM OTHER DEADLY PREJUDICES
AROUND SEX AND GENDER, AND RACE
AND CLASS. AN UNDERSTANDING OF
THE INTERCONNECTEDNESS OR
INTERSECTIONALITY OF THESE
REALITIES IS A PROFOUND TOOL FOR
IMPROVING OUTCOMES FOR NOT ONLY
DISABLED PEOPLE BUT FOR
EVERYONE. WE NOW UNDERSTAND AND
IN MANY WAYS THE COVID PANDEMIC
MADE THIS CLEARER, THAT SUCH
APPARENTLY OBJECTIVE MEASURES
SUCH AS FUNCTION AND QUALITY OF
LIFE ARE OFTEN WEBBIZED WITH
REAL LIFE AND DEATH CONSEQUENCES
FOR DISABLED PEOPLE AND FOR
THOSE WHO ARE RENDERED DISABLED
BY THE VERY SOCIETIES THAT MUST
SUPPORT THEIR FLOURISHING.
HOWEVER, WE CAN BE INCREDIBLY
HELPFUL. NOT ONLY IS NIH
SYSTEMATICALLY CONFRONTING
ABLEISM BUT ALSO IN THE
BIOMEDICAL COMMUNITY AND SOCIETY
AT LARGE THERE IS INCREASING
ACKNOWLEDGMENT OF WHAT HAS
ALWAYS BEEN THERE. THE
FUNDAMENTAL IMPORTANCE OF THE
LIVED EXPERIENCES OF DISABLED
PEOPLE. AND THE DRIVE TOWARDS
DISABILITY RIGHTS. FOR MANY
YEARS, DISABLED PERSPECTIVES
WERE OFTEN IGNORED, DISCOURAGED
IN BIOMEDICAL RESEARCH WITHIN
WIDER SOCIETY BUT AS EVIDENCED
BY THE CONTINUING CONVERSATIONS
WE ARE HAVING HERE TODAY,
DISABLED PEOPLE ARE EXPERTS,
THEY ARE EXPERTS ON THEIR OWN
FORM OF FLOURISHING, ON THEIR
HEALTHCARE AND MEDICAL NEEDS,
AND HOW THEY WOULD LIKE TO
APPROACH THEIR OWN FUTURES.
HEALTHCARE PROFESSIONALS AND
DISABLED PEOPLE OFTEN BEGAN AT
DIFFERENT PLACES AND DIFFERENT
SPACES. BUT THE POTENTIALITIES
FOR DIALOGUE ENGAGEMENT,
COLLABORATION, AND I THINK
HEALING AND JUSTICE ARE ALMOST
LIMITLESS BECAUSE OF THE
INCREASING ACKNOWLEDGMENT THAT
OUR HEALTHCARE AND OUR SOCIETY
IS THAT MUCH RICHER THROUGH THE
NECESSARY INCLUSION OF DISABLED
VOICES. THOUGH MUCH WORK NEEDS
TO BE DONE.FUL TODAY'S
DISCUSSIONS WILL NOT ONLY
CONTINUE OUR DIALOGUE ABOUT
ABLEISM AND SCIENCE AND THE
SCIENTIFIC WORK FORCE BUT AS
IMPORTANTLY UNDERSCORE THOUGH
THE HARMS ARE GRAVE, THE
OPPORTUNITIES ARE ENDLESS. SO
WITH ALL THAT SAID BEFORE WE
BEGIN I HAVE A FEW ZOOM
HOUSEKEEPING NOTES. SO CAN WE
SHOW THOSE SLIDES? HOUSEKEEPING
ITEMS. PLEASE NOTE THAT THIS
MEETING IS BEING RECORDED. AND
PLEASE MUTE YOUR MIKE AND TURN
YOUR CAMERA OFF IF YOU ARE NOT
SPEAKING. IF YOU ARE
EXPERIENCING TECHNICAL ISSUES AT
ANY TIME DURING THE SESSION,
SEND A CHAT TO THE HOSTS.
ALTERNATIVELY YOU CAN EMAIL
ABUCKLEY@INFINITYCONFERENCES.COM
.
AND S STARK.
SSTARKE@INFINITYCONFERENCESCONF.
AND PUT TECH SUPPORT IN THE
EMAIL SUBJECT LINE. NEXT SLIDE
PLEASE. TO TURN ON CLOSE
CAPTIONS, CLICK THE CLOSE
CAPTION ICON IN YOUR TASK BAR.
TO ADJUST THE SIZE OF THE
CAPTIONS CLICK THE CARAT NEXT TO
THE CAPTION ICON THEN CLICK
CAPTION SETTINGS. PULL THE DOT
ON THE SLIDER TO ADJUST THE SIZE
OF THE CAPTIONS. NEXT SLIDE
PLEASE. QUESTIONS. SELECT THE
Q&A BUTTON IN THE TASK BAR ON
YOUR SCREEN TO SUBMIT A QUESTION
FOR TODAY'S PANELISTS. ENTER
YOUR QUESTION INTO THE Q&A PANEL
THEN SEND -- THEN SELECT THE
SEND BUTTON. NEXT SLIDE PLEASE.
OKAY. SO NOW WE WILL SEE A
CONVERSATION BETWEEN DR. THERESA
CRUZ AND DISABLE ADVOCATE
GAELYNN LEA. THANK YOU VERY
MUCH.
>>WELCOME TO DAY TWO OF NIH
ABLEISM IN MEDICINE AND CLINICAL
RESEARCH WORKSHOP. MY NAME IS
THERESA CRUZ, DIRECT STORE OF
THE NATIONAL CENTER FOR MEDICAL
REHABILITATION RESEARCH AT THE
EUNICE KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT. I AM A MIDDLE
AGED WHITE WOMAN WITH CHIN
LENGTH BROWN HAIR AND BLUE EYES
AND I'M WEARING A NAVY BLUE TOP.
IT IS MY PLEASURE TO WELCOME YOU
AND TO THANK YOU FOR JOINING US
ON BEHALF OF THE LARGER PLANNING
COMMITTEE AT NIH. THIS WORKSHOP
HAS BEEN A TEAM EFFORT. IF YOU
MISSED ANY OF YESTERDAY'S
WONDERFUL SPEAKERS, THEY WERE
RECORDED AND YOU WILL GET A
CHANCE TO VIEW THEM ON NIH'S
VIDEOCAST NEXT WEEK. TODAY'S
CONFERENCE IS ALSO BEING
RECORDED. WE ARE GOING TO START
TODAY'S AGENDA WITH A SPECIAL
TREAT. OUR GUEST IS GAELYNN
LEA, GAELYNN IS A DISABILITY
ADVOCATE AND AWARD-WINNING COME
POSER AND MUSICAL ARTIST. SHE
WAS 2016 NPR TINY DESK WINNER.
THANK YOU, GAELYNN, FOR JOINING
US AND AGREEING TO SPEAK WITH ME
TODAY.
>>THANK YOU SO MUCH FOR HAVING
ME. I JUST WANTED TO DO A QUICK
VISUAL DESCRIPTION, I'M A SMALL
WHITE WOMAN, SEATED IN A
ELECTRIC WHEELCHAIR WITH MY DARK
HAIR PULLED UP WITH A PINK
FLOWER CLIP AND A FLOURAL DRESS
HOLDING MY VIOLIN UPRIGHT LIKE A
CELLO IN MY WHEELCHAIR. THANKS
FOR HAVING ME TODAY.
>>WONDERFUL. THANK YOU START BY
TELLING AUDIENCE A LITTLE BIT
ABOUT YOURSELF?
>>YEAH. I'M A VIOLINIST FIRST
AND FOREMOST, I STARTED PLAYING
BACK IN 5TH GRADE THANKS TO THE
HELP OF CREATIVE MUSIC TEACHER
WE WERE ABLE TO ADAPT I PLAYED
INSTRUMENT AND PLAY IT LIKE A
CELLO IN MY WHEELCHAIR. I HAVE
BEEN PERFORMING EVER SINCE AND
BECAME A SONG WRITER MUCH LATER
AT AGE 27 I WROTE MY FIRST SONG.
A FEW YEARS LATER WON THE TINY
DESK CONTEST AND STARTED TOURING
AND DOING A LOT OF PUBLIC
SPEAKING AS WELL ABOUT
ACCESSIBILITY IN THE MUSIC
INDUSTRY AND RECENTLY IN 2021
CO-FOUNDED AN ORGANIZATION
CALLED RAMPED RECORDING ARTIST
MUSIC PROFESSIONALS WITH
DISABILITIES. I'M LOCATED IN
MINNESOTA.
>>THANK YOU. THIS CONFERENCE
TODAY SUBPOENA ABOUT ABLEISM,
WHICH IS STEEPED IN A NEGATIVE
BIAS AND NEGATIVE ASSUMPTION
ABOUT DISABILITY. YOU HAVE
SPOKEN PUBLICLY ABOUT HOW YOUR
DISABILITY HAS GIVEN YOU
FREEDFREEDOM. CAN YOU TALK ABOUR
MIND SET AND HOW THAT IMPACTS
YOUR LIFE?
>>YEAH. I BELIEVE FIRST AND
FOREMOST THAT DISABILITY IS A
FORM OF DIVERSITY THAT CAN BE
CELEBRATED AND SUPPORTED KIND OF
LIKE ANY OTHER FORM OF DIVERSITY
OF BODY OR MIND. SO FOR ME
DISABILITY ALLOWED ME TO KIND OF
UNFORTUNATELY BECAUSE OF THE WAY
OUR SOCIETY SORT OF PUTS
DISABILITY OFF TO THE SIDE OR
LEAVES IT OUT OF MANY
DISCUSSIONS, IN A WAY THAT IS
TERRIBLE AND OBVIOUSLY I WANT TO
SEE THAT CHANGE BUT IT ALSO
ALLOWED ME TO RECOGNIZE THAT
MANY OF THE STANDARD AND
EXPECTATIONS AND THE BOUNDARIES
THAT SOCIETY PUTS ON US ARE NOT
REALLY THERE FOR OUR BENEFIT,
THEY ARE THERE TO KEEP US IN
LINE. SO WITH DISABILITY PUTTING
ME ON THE FRINGES I WAS ABLE TO
DEVELOP THIS SENSE OF IDENTITY
THAT FEELS VERY FREE FROM
LIMITATIONS THAT SOCIETY MIGHT
PUT ON ME. I THINK THE FORM OF
KISS ABILITY, THAT REALLY EVEN
IS EMBRACE THIS MIND SET OF
FREEDOM, YOU DON'T HAVE TO BE
DISABLED TO RECOGNIZE THAT YOU
HAVE THE RIGHT TO BE THE
AUTHENTIC VERSION OF YOU NO
MATTER WHO YOU ARE. BUT
DISABILITY JUST HELPED ME
REALIZE THAT FREEDOM, THE INNER
FREEDOM I FEEL AT A YOUNGER AGE
I THINK BECAUSE I WASN'T
INCLUDED IN A LOT OF THE
NORMATIVE STANDARDS OR
EXPECTATIONS THAT A LOT OF MY
PEERS WERE.
>>YOU HAVE ALSO SPOKEN ABOUT
THE REPRODUCTIVE HEALTH NEEDS OF
PEOPLE WITH DISABILITIES. THAT
WAS A TOPIC THAT WE COVERED
YESTERDAY IN MONICA'S TALK. IF
YOU COULD SPEAK TO CLINICIANS,
WHO PROVIDE REPRODUCTIVE
HEALTHCARE, WHAT WOULD YOU LIKE
THEM TO KNOW HOW THEY ENGAGE
WITH PATIENTS WITH DISABILITIES
I THINK THE BIGGEST THING THAT I
HAVE FELT ESPECIALLY AROUND
REPRODUCTIVE HEALTH
SPECIFICALLY, IS THAT A LOT OF
TIMES DOCTORS COME IN THIS WITH
ASSUMPTIONS ABOUT WHAT I MIGHT
WANT OR WHAT RELATIONSHIPS I
MIGHT BE IN OR THE VALUES I HOLD
OR CAPABILITIES THAT I WOULD
HAVE IN LIFE. I THINK JUST
RECOGNIZING THAT YOU ARE A
PERSON RAISED IN A SOCIETY THAT
DIDN'T TALK ABOUT DISABILITY OR
EDUCATE AROUND SEXUALITY AND
DISABILITY BASICALLY AT ALL,
JUST TO RECOGNIZE THAT YOU
PROBABLY DO HAVE ASSUMPTIONS AND
TO REALLY WORK HARD TO LEAVE
THOSE AT THE DOOR AND ASK
QUESTIONS, WHAT DO YOU WANT?
WHAT DO YOU THINK? WHAT ARE YOUR
RELATIONSHIPS LIKE? TO REALLY
LEAVE IT UP TO BE DIRECTED BY
THE DISABLED PERSON THAT YOU ARE
TAKING CARE OF BECAUSE IT
DOESN'T HELP CREATE ENVIRONMENT
OF TRUST IF YOU RECOGNIZE YOUR
DOCTOR IS COMING AT A DISCUSSION
WITH A VERY SPECIFIC VIEW IN
MIND. THAT YOU HAVE TO EDUCATE
YOUR DOCTOR ABOUT THE REALITY OF
YOUR LIFE. IT IS MUCH, MUCH
EASIER WHEN THERE IS AN OPEN
DIALOGUE. CURIOSITY RATHER THAN
ASSUMPTION SO THE BIGGEST THING
FOR ME IS TO LEAVE ASSUMPTIONS
AT THE DOOR. ALSO TO RECOGNIZE
DISABLED PEOPLE WANT AND NEED
THE SAME THINGS AS EVERYBODY
ELSE BUT JUST MIGHT NEED SUPPORT
IN DOING THESE THINGS SO NEVER
REALLY WRITING ANYTHING OFF AS A
BARRIER THAT CAN'T BE OVERCOME
BUT RATHER SOMETHING THAT NIGHT
NEED EXTRA ATTENTION OR EXTRA
SUPPORT ESPECIALLY REPRODUCTIVE
HEALTH AND PARENTING AND
SEXUALITY AND ALL THOSE AREAS
WHERE WE MIGHT NOT TALK ABOUT IT
REGULARLY WITH OUR MAIN DOCTOR,
IT IS REALLY IMPORTANT TO GO
INTO IT WITH AN OPEN MIND AND
THEN SAY WHAT KIND OF SUPPORT DO
YOU NEED, IS THERE ANYTHING YOU
NEED. THEN FILL OUT AN OPEN
DIALOGUE AND JUST RECOGNIZING WE
ARE ALL FULL, DIVERSE CAPABLE OF
LOVE HUMAN BEINGS THAT NEED THE
SAME THINGS THAT ANY OTHER
PATIENT NEEDS.
>>OBVIOUSLY YOUR PASSION AND
YOUR VOCATION IS THE MUSICAL
ARTS AND INCLUSION FOR PEOPLE
WITH DISABILITIES IN THE ARTS.
NIH SHARES YOUR INTEREST IN THIS
INTERSECTION OF HEALTH AND MUSIC
IN PARTICULAR, IN 2017 NIH
LAUNCHED THE PROGRAM AND THE
NATIONAL CENTER FOR ARTS AND
NATIONAL ORCHESTRA AND NATIONAL
ENDOWMENT OF THE ARTS SO WE HAVE
A LOT OF COMMONALITIES. WE DID
THAT BECAUSE WE WANTED TO
UNDERSTAND HOW MUSIC IMPROVES
HEALTH AND WELLNESS PARTICULARLY
BRAIN HEALTH. CAN YOU TALK A
LITTLE BIT ABOUT HOW MUSIC
AFFECTED YOUR HEALTH?
>>THAT IS AN INTERESTING
QUESTION. OBVIOUSLY MUSIC HAS
HAD A TREMENDOUSLY POSITIVE
EFFECT ON MY WELLING WITH AND MY
MENTAL HEALTH I THINK. BUT THE
REALITY, THIS IS WHERE I WANT
THE WORLD TO GET TO AT SOME
POINT IS THAT IT ACTUALLY DOES
THAT FOR EVERYBODY. SO
DISABILITY OR NO DISABILITY,
MUSIC IS JUST AN EXTREMELY
VIBRANT AND IT TOUCHES US IN A
WAY THAT VERY FEW OTHER THINGS
DO. . SO IT BOOSTS YOUR MENTAL
HEALTH AND YOUR SEASO SENSE OF L
BEING. WHEN I DEALT WITH ANXIETY
OR DEPRESSION BEFORE I PLAY, I
ALWAYS FEEL WORSE THAN AFTER I'M
DONE. I ALWAYS FEEL BETTER. BUT
I DON'T THINK OF DISABILITY AS
SOME FORM OF LIKE SOME GROUP
THAT NEEDS MUSIC MORE THAN
ANOTHER GROUP. I REALLY FEEL
THAT WE ALL BENEFIT FROM MUSIC,
FOR THE SAME REASONS BECAUSE IT
IS A UNIVERSAL THING. AND I'M
GLAD WE ARE RECOGNIZING DISABLED
PEOPLE ALSO NEED ACCESS TO MUSIC
AND SUPPORT AND ENCOURAGEMENT
AND ADAPTATION, THAT IS A REALLY
BIG ONE, ENCOURAGING THE
ADAPTATIONS FOR EXAMPLE THAT I
HAVE BEEN ABLE TO FIGURE OUT
WITH THE HELP OF TEACHERS, ALL
THAT IS SUPER IMPORTANT. BUT IT
IS BECAUSE MUSIC IS UNIVERSALLY
GOOD FOR OUR WELL BEING, THAT IS
IMPORTANT TO INCLUDE DISABILITY
WHEN THINKING OF MUSIC.
>>I WANTED TO WRAP UP BY SAYING
THANK YOU FOR JOINING US TODAY
AND SHARING YOUR PERSPECTIVE AND
YOUR EXPERIENCE. MAYBE YOU CAN
HELP THE REST OF US IMPROVE OUR
HEALTH BY TREATING US TO SOME OF
YOUR MUSICAL TALENTS ON THIS
SECOND DAY OF THE WORKSHOP.
>>AWESOME. I WOULD LOVE THAT.
THANK YOU FOR HAVING ME. I'M
GOING TO PERFORM TWO SONGS FOR
YOU THIS MORNING. THE FIRST SONG
IS CALLED WATCH THE WORLD
UNFOLD. AND IT IS ABOUT NOT
BEING SO HARD ON YOURSELF WHEN
YOU MAKE A MISTAKE. HERE WE GO.
♪ PUSH IT UP, PUSH IT UP JUST
LIKE YOU SEE, BUT YOU OVER QUITE
A FLOWER, IF YOU -- LIKE A WEED,
DRIVING THROUGH, DRIVING THROUGH
KNOWING WHERE YOU ARE GOING BUT
THE WINDSHIELD IS ALWAYS DIRTY
AND YOU NEVER GET TO SEE, WHAT
MAKES YOU THINK THAT YOU WILL
EVER GET THERE ♪
♪ WHAT MAKES YOU THINK YOU
DESERVE TO KNOW, WHO ARE YOU
REALLY, ARE YOU SO IMPORTANT,
TAKE A LOOK AROUND AND WATCH THE
WORLD UNFOLD, WATCH THE WORLD
UNFOLD ♪ WATCH THE WORLD UNFOLD
♪ WATCH THE WORLD UNFOLD ♪
NEED ADVICE, NEED ADVICE, YOU
HAVE NO CLUE WHAT YOU ARE DOING,
AN IDENTITY UNHINGED, WHERE THE
TURN, WHERE TO TURN, THERE'S SO
MANY OPINIONS, AND THEY ARE ALL
A LITTLE DIFFERENT AND THE
OUTLETS GET YOU DOWN, WHAT MAKES
YOU THINK THAT YOU WILL EVER GET
THERE, WHAT MAKES YOU THINK YOU
DESERVE TO KNOW, WHO ARE YOU
REALLY, ARE YOU SO IMPORTANT,
TAKE LOOK AROUND AND WATCH THE
WORLD UNFOLD, WATCH THE WORLD
UNFOLD WATCH THE WORLD UNFOLD I
WATCH THE WORLD UNFOLD PUSH IT
UP, PUSH IT UP THROUGH THE DIRT
BUT YOU'RE NEVER QUITE A FLOWER
YOU FEEL MORE JUST LIKE A WEED
THERE YOU GO. THE NEXT SONG THAT
I'M GOING TO PERFORM FOR YOU
TODAY IS CALLED I WAIT. THIS IS
A SONG I WROTE SPECIFICALLY
ABOUT THE DISABILITY RIGHTS
MOVEMENT IN AMERICA AND
SPECIFICALLY AROUND MAKING SURE
DISABLED PEOPLE ARE INCLUDED
WHEN WE ARE DISCUSSING CHANGES
TO HEALTHCARE AND OTHER PROGRAMS
THAT SUPPORT US IN OUR COMMUNITY
AND MAKE IT POSSIBLE FOR US TO
ACHIEVE OUR FULL POTENTIAL AND
TO CONTRIBUTE TO SOCIETY AND
OFTEN I FEEL LIKE EVERYONE IS
INCLUDED IN THESE DISCUSSIONS
EXCEPT DISABLED PEOPLE
THEMSELVES. SO THIS WAS A SONG
KIND OF BORN OUT OF FRUSTRATION
AND A CALL TO THE REST OF
SOCIETY TO REMEMBER TO INCLUDE
PEOPLE WITH DISABLES AT ALL
LEVELS OF -- DISABLES AT ALL
LEVELS OF LEADERSHIP AND ALL
LEVELS OF PROCESS AND GIVE US A
SEAT AT THE TABLE. THIS IS
CALLED I WAIT.CAN YOU SEE ME,
WAY IN THE BACK HERE, I HAVE
BEEN WAITING, I HAVE BEEN
WAITING IN LINE, IT'S BEEN A
LONG TIME, TO GET NO SERVICE,
STILL I'M HOPING I AM HOPING FOR
A SIGHT, THAT WHEN ONE DAY
THINGS WILL CHANGE AND WE CAN
FINALLY TAKE THE PLACE THAT
HISTORY WON'T FORGET US OR, THE
PAIN AS A WHILE AND SO I'LL
WAIT.
DID YOU KNOW THAT WHEN I GET
ANGRY, I BREATHE FIRE, I CAN
BURN THIS PLACE DOWN, YOU MAY
NOT REALIZE ALL THIS MOMENT, I
AM NOW JUST TAKE A LOOK AROUND,
SO EVERYBODY KNOWS THAT YOU NEED
A PLACE TO GO AND LIVING ISN'T
EASY IF YOU INCINERATE YOUR HOME
AND SO I STAY AND SO I STAY. I
MAY SEEM AN DEGREE, SO PLEASE
FORGIVE ME, BUT I AM STILL NOT
FREE IN THIS SOCIETY, HOW LONG
MUST WE KEEP FIGHTING FOR OUR
RIGHT TO BE -- WE ARE ALL BETTER
TO FOR GIVING -- FOR GIVING. SO
IF YOU HEAR THEM MAKE CLAIMS OF
PROGRESS, TAKE A GOOD LOOK AND
SEE IF IT IS THERE, YOU NEED TO
SEE NOW AT THE TABLE, TO PLEASE
INVITE US OR DON'T PRETEND TO
CARE.
>>THANK YOU SO MUCH FOR HAVING
ME. HAVE A WONDERFUL REST OF THE
DAY. AND TAKE CARE. GAELYNN
LEA. THANK YOU. THAT WAS REALLY
MOVING. NOW WE WILL HAVE A
KEYNOTE FROM JAIPREET VIRDI,
ASSOCIATE PROFESSOR DEPARTMENT
OF HISTORY AT THE UNIVERSITY OF
DELAWARE WHOSE RESEARCH FOCUSES
ON WAYS MEDICINE AND TECHNOLOGY
IMPACT THE LIVED EXPERIENCES OF
DISABLED PEOPLE.
>>GOOD MORNING, EVERYONE. BY
WAY OF AUDIO DESCRIPTION I'M A
WOMAN WITH SHORT CURLY BLACK
HAIR AND WEARING A PINK HEAD
BAND AND GLASSES. I AM SITTING
IN FRONT OF WALLPAPERED BACK
WALL WITH PINK AND PURPLE
DESIGN. I'M FROM DELAWARE.
I WANT TO APOLOGIZE IN ADVANCE
FOR ANY TECHNICAL ISSUES THAT
MIGHT OCCUR AND VERY ASSORTMENTY
WEATHER HERE IN NEWWARK. THE
TITLE OF MY TALK TODAY IS ON
HEREDITARY DEAFNESS, A HISTORY
OF EUGENICS AND ABLEISM. AND
THIS TALK GOES ON TO MY SECOND
BOOK MANUSCRIPT. WHICH IS TITLED
THE DEAFNESS PROBLEM IN MODERN
BRITAIN. INCREASING CONCERN
ABOUT HEREDITARY DEAFNESS IN THE
LATE 19TH CENTURY SHAPED BY
STATISTICS AND EUGENICS. AT THE
CRUX OF HISTORY, IS THE
PROFESSIONAL HISTORY OF ORAL
SURGERY, NAMELY THE (INAUDIBLE)
WHO SPECIALIZED IN DEAFNESS AND
NEW DISEASES WHO REFER TO
THEMSELVES AS ORAL SURGEONS AND
BY CENTURY'S END AUDIOLOGISTS.
WHILE PREDOMINANTLY APPROACH THE
PEOPLE AND SUBJECTS FOR
DEVELOPING THEORIES ON DISEASE
CAUSATION AND HEARING LOSS, SOME
ORAL SURGEONS CONSIDERED ACCESS
TO LANGUAGE AND EDUCATION JUST
AS ESSENTIAL AS MEDICAL CARE FOR
A DEAF PERSON OVERALL WELL
BEING. AS A RESULT THE EXTENDED
PROFESSIONAL REACH BEYOND THE
CLINICAL AND HOSPITAL SPACE
TOWARD SCHOOLS FOR THE DEAF,
POLICY AND LEGISLATION AND EVEN
WITHIN BROADER CULTURAL
CONVERSATIONS ABOUT SOCIAL
WELFARE. THIS HAD SIGNIFICANT
BEARING HOW MEDICAL AND SOCIAL
ABLEISM AGAINST DEAF PEOPLE WERE
ROOTED IN AN EXPECTATION FOR
DEAF PEOPLE TO ADJUST TO HUMAN
SOCIETY IF NOT BECOME HUMANS
THEMSELVES AND PASS AS ABLE
BODIED. SO THIS ALSO CONSIDERS
HOW DEAF PEOPLE IN CONTEXT OF
DEAFNESS BOTH IN SUPPRESSION AND
ACTIVE RESISTANCE TO
INTERVENTION WHICH SHAPED BY THE
WAY THESE AUDIOLOGISTS THOUGHT
ABOUT THE -- AS MEDICAL EXPERTS
WITHIN THE VARIOUS ROLES THEY
CRAFTED FOR THEMSELVES. TODAY
I'M GOING TO BE CENTERING
CONCERN ON HEREDITARY DEAFNESS.
THESE CONCERNS WERE BY NO MEAN
STANDARDS, NORMALLY UNIVERSALLY
AGREED UPON BUT THEY PLAYED A
TREMENDOUS ROLE IN FORMING
EDUCATION THAT IS TRAINING BY
SPEECH RATHER THAN SIGN, AS WELL
AS SCHOOL, MEDICAL SURVEILLANCE,
LEGISLATIVE ARGUMENTS ABOUT
DEAF, GUIDELINES FOR TREATING
DEAFNESS AND NEW DISEASE, AND ON
THE EXTREME, CALM PAIN FOR
STERILIZATION AS AN ECONOMIC
STRATEGY ON SOCIAL WELFARE.
MOREOVER, THE RHETORIC
SURROUNDING HEREDITARY DEAFNESS
WAS POWERFUL AND THUS CRUCIALLY
SHAPING THE LIVES OF DEAF PEOPLE
FOR GENERATIONS TO COME. NEXT
SLIDE PLEASE. JUST AS A
STATISTICAL AUTHORITY. ON THE
SLIDE IS A SUMMARY OF WHAT I
WILL BE SPEAKING ABOUT. THE
PROFESSIONAL EXPANSION OF ORAL
SURGERY IN THE GROWING AUTHORITY
OF AUDIOLOGIST OCCUR BETWEEN THE
BROADER CONTEXT ABOUT HOW
SCIENTIFIC MEDICINE CAN BE
APPLIED TO SOLVING SOCIAL
PROBLEMS INCLUDING HOW TO
PROVIDE CARE AN SERVICES FOR
DISABLED PEOPLE. NOW, IN
OPTIMISM APPEARED SELF-EVIDENT
IN A SOCIETY THAT WAS LIFE WITH
PERCEPTION OF PARALLELISM MANY
THE APPLIED SCIENCES, AND WITH
EXPECTATION OF PROGRESS
REQUIRING NEW AND PROMISING
SOCIAL STRATEGY FOR
UNDERSTANDING THE SOCIAL
CALCULCALCULUS. SO ORAL SURGEONG
COMPILED NARRATIVE CASE STUDIES
FOR THEIR PATIENT AND MAINTAIN
CASE STUDIES AND RECORDS WITHIN
HOSPITAL AND THE DATA THEY
CREATED LENT SUPPORT HOW THEY
ASSESS THE PREVALENCE OF
DEAFNESS AND DEAF PEOPLE WITHIN
A GIVEN POPULATION. BUT ALSO HOW
THEY INTERPRETED AND CATEGORIZED
NEW DISEASE. ESPECIALLY HER REDS
TEAR DEAFNESS THEY FOUND NOT
ONLY DIFFICULT TO DIAGNOSE BUT
ALSO TREAT OR CURE. MAINTAIN
RECORDS OF HEALTH STATUS
INCRUISING DETAILS ABOUT
PROBABLE OR ACTUAL CAUSE OF
DEAFNESS, THE RATE OF HEREDITARY
DISEASE, AND PRESENCE OF DEAF
MUTE PEOPLE AS THEY WERE DEFINED
AT THE TIME, WITHIN A GIVEN
POPULATION. THESE CONCERNS
ABOUT DEAFNESS BROADLY SPEAKING
BECAME CRUCIAL ISSUES FOR
STATISTICS ESPECIALLY ONE'S
NOTION OF PREVENTION AND
CIVILIAN BECAME INTERTWINED WITH
GENESIS IDEOLOGY. FIRST DEVISED
IN MANY 1883 BY THE BRITISH
PARLIAMENT FRANCIS GOLDMAN,
EUGENICS COMBINED TRENDS IN
BIOSTATISTICS AND BIOMEDICINE TO
OFFER NEW PROGRESSIVE TO SOLVE
WAY TO IMPROVE THE INBORNE
QUALITIES OF THROUGH MARRIAGE
REGULATION AND PRO CREATION.
EUGENICS BY MANY EXPERTS AT THE
TIME WOULD HAIL AS A SOLUTION OF
THE PRESENT PROBLEM IN BRITISH
SOCIETY ISSUES LIKE
URBANIZATION, DISEASE, POPULISM
AND MORE (INAUDIBLE) IT WAS
PERCEIVED AS A TOOL FOR
AUGMENTING CLASS, GENDER, AND
RACE BASED DIVISION. FOR MEDICAL
AND POLICY MAKERS, EUGENICS
OFFERED AN INTELLECTUAL
RESPECTABILITY BY TRANSLATING
THE STATISTICAL DATA ABOUT
HEREDITARY POLICY. AND TO
DECREASE ANY KIND OF ANXIETIES
ABOUT THE DEGRADATION OF RACE.
NEXT SLIDE PLEASE. WHILE
FINDING OF DEGENERATION TENDING
TO BE ANECDOTAL AND DESCRIPTIVE
RATHER THAN STATISTICAL THIS
FIELD OF SOCIAL DEGENERATION
INFLUENCED PUBLIC HEALTH
POLICIES AND LEGISLATION INFORM
REFORM. CONDITIONAL DEAF MUTE
PEOPLE WHOM HADOCKMENTED
GENERATION OF HER REDS TEAR
DEAFNESSESS SPECIALLY THROUGH
MARRIAGES BETWEEN DEAF PEOPLE,
OFTEN FELL INTO THIS CATEGORY.
DEAF EDUCATORS RAISED THE
QUESTION, WAS HEREDITARY DEAF
MUTISM A SINGLE VARIATION THAT
WAS EASILY TRANSMITTED THROUGH
DEAF FAMILIES WHO INTERMARRY WAS
CONDITIONAL DEAFNESS A
HEREDITARY TRAIT? AND WOULD
MARRIAGES BETWEEN HEREDITARY
DEAF PEOPLE AND HEARING PARTNER
FURTHER SPREAD DEAFNESS IN
QUOTE, POLLUTE THE NATIONAL
STOCK? SO BETWEEN 1890 AND 1930,
THESE EUGENICS POLICIES CROSSED
INTO TWO INSTITUTIONS SOME
EXPERTS CATALOG THE DIFFERENT
KIND OF CLASSIFICATION OF
DEAFNESS THAT THEY TRIED TO
(INAUDIBLE) ALL OF THEM
PEDAGOGUE SPEECH RATHER THAN --
WAS TO THEN WAY TO GIVE TEACHERS
THE RESPONSIBILITY AND ABILITY
TO INSTILL SPOKEN LANGUAGE IN
DEAF PEOPLE, QUOTE, TO RETURN
THEM TO HUMAN SOCIETY AND THUS
HUMAN EVOLUTION. AT ONE DOCTOR
ASSERTED, THIS ISSUE OF TEACHING
DEAF CHILDREN SPEECH WAS QUOTE
EUGENIC ONE. SO ORALISM THEN
ESPECIALLY WHEN EMERGE WITH
CLINICAL DOCTRINE WAS PRESENTED
AS A METHOD FOR PROVIDING DEAF
CHILDREN WITH RESPECTABILITY,
LITERACY AND MANNERISM HAS BEEN
AFFECTED FOR HOW THEY CAN
PARTICIPATE IN SOCIAL
STIMULATION. ESPECIALLY WHEN
PROVIDED WITH STATE PROVISION.
NEXT SLIDE PLEASE. EDUCATION IS
THE ONLY REMEDY IS THE SITE
WHERE DIFFERENT EXPERTS MEET TO
APPLY EUGENICS IDEAS FOR CONCERN
OF DEAF AND HEARING A POINT
STRESSED BY ONE STRU INSTRUCTORR
THE DEAF. EDUCATION IS THE ONLY
REMEDY THAT CAN IN ANY WAY
MITIGATE THE ILLS WHICH MAN KIND
ARE LIABLE TO TRANSMIT TO THEIR
DESCENDENTS. SO THIS EUGENICS
STRATIFY DEAF CHILDREN TO
QUESTION OF HEREDITARY BECAME
PART OF LARGER PROCESS OF
NORMALIZING AND STANDARDIZING
DEAF EDUCATION AND TIED TO
PROGRESSIVE GOAL OF HEALTH
PREVENTION AND EFFICIENCY. IN
OTHER WORDS, THE ULTIMATE GOAL
BECAME TO REDUCE IF NOT
ELIMINATE MER RED TEAR THAT
OTHERWISE SPREAD UNCHECKED
THROUGH THE BRITISH POPULATION.
SO WHILE ALL THESE BRITISH
LAWYERS WERE ENTANGLED WITH
ISSUES OF DEAF EDUCATION THE
LEVEL OF ENGAGEMENT STARTED TO
INCREASE STEADILY DURING THE
1880s AS THEY FACE GREATER
RESPONSIBILITY TO PROTECTING
HEALTH AND WELFARE OF SCHOOL
CHILDREN INCLUDING THROUGH EARLY
PREVENTION PROGRAM TO HALT
PROGRESSIVE DEAFNESS. THERE WAS
SEVERAL KEY EVENTS THAT OCCURRED
WITHIN THE LATE 19TH CENTURY
THAT WOULD ALSO DRASTICALLY
TRANSFORM THESE ROLES. FIRST
WITH RESULT OF SECOND
INTERNATIONAL CONGRESS ON
EDUCATION OF THE DEAF, THAT TOOK
PLACE IN MILAN IN 1880. THIS WAS
A MULTI-NATIONAL HE WANT THAT
BROUGHT TOGETHER 164 EDUCATORS,
PHYSICIANS AND LAY PERSON AND
DISCUSSION INCLUSIVELY FOCUSED
ON METHODS OF -- FOR EDGE CASING
DEAF PEOPLE. ONLY ONE DEAF
DELEGATE ATTENDED AND THE
CONVENTION WAS MOSTLY MANAGED BY
PROMOTERS OF ORALISM. BUT AT THE
END THE CONVENTION HAD EIGHT
RESOLUTIONS THAT DECLARED SPEECH
WAS MUCH MORE PREFERABLE AND
EFFECTIVE THAN SIGN LANGUAGE FOR
ASSIMILATING DEAF PEOPLE INTO
SOCIETY. AND THEY CLAIM THE
RESULT OF CONVENTION CLAIM QUOTE
ORAL METHOD ARE TO BE PREFERRED
FOR EDUCATION AND INSTRUCTION OF
THE DEAF AND DUMB. HOWEVER, WE
COULD IT WAS NOT ALWAYS
UNIVERSAL. NOR DID IT COMPLETELY
ERADICATE SIGN LANGUAGE FROM
SCHOOLS FOR DEAF CHILDREN. IN
FACT, MANY BRITISH SCHOOLS
CONTINUE WITH THE COMBINED
SYSTEM OF TEACHING THAT MERGED
SIGN LANGUAGE WITH SPEECH
TRAINING. THE SECOND KEY EVENT
THAT OCCURRED WERE RESULT OF
SEVERAL SURVEYS TAKEN BY HEAD
MASTERS AT DEAF SCHOOL AND
VARIOUS CHARITABLE SOCIETY
TRYING TO DETERMINE THE SOCIAL
PROBLEM OF BLINDNESS AND
DEAFNESS WITH AIM OF FORMULATING
MORE BENEFICIAL POLICY. THESE
SURVEYS PROVIDED ESSENTIAL DATA
FOR PRESSING SATE ACTION
ESPECIALLY WHEN COUPLED WITH THE
UK 1861 WHICH REVEALED THAT DEAF
AND BLIND CHILDREN ACTUALLY NOT
RECEIVING ADEQUATE EDUCATION AND
MANY SCHOOLS FOR BLIND AND/OR
DEAF CHILDREN WERE ACTUALLY FALL
BELOW THE REQUIRED STATE LEVELS
FOR EDUCATION. THE RESULT OF THE
SURVEY LED TO THE THIRD KEY
EVENT WHICH WAS FORMULATION OF
THE ROYAL COMMISSION TO CONSIDER
EXTENDING THE 1870 EDUCATION ACT
WHICH ESTABLISHING COMPULSORY
SCHOOLING FOR CHILDREN AGES 5-12
BUT THE ACT PREVIOUSLY DID NOT
INCLUDE (INAUDIBLE) SPECIAL
INSTRUCTION FOR BLIND DEAF
EPILEPTIC OR DISABLED CHILDREN.
SO MANY SCHOOL BOARD COULD
REFUSE ADMISSION OF THESE
CHILDREN. THE RESULTING -- FROM
THE ROYAL COMMISSION LED TO THE
FORMATION OF THE ELEMENTARY
EDUCATION BLIND AND DEAF ACT
BEING PASSIONED IN 1893 TO
PROVIDE EVERY BLIND, DEAF AND
DISABLED CHILD THE RIGHT TO
EDUCATION PAID BY LOCAL AND
GRANTS FROM THE GOVERNMENT. BY
1907 THE ENTIRE COST OF
EDUCATION FOR DISABLED CHILDREN
WERE COVERED BY TAX PAYERS. SO
WHAT DOES IT MEAN FOR DEAF
CHILDREN AS WELL AS (INAUDIBLE)
EXTENDING THEIR AUTHORITY FROM
BEYOND THE CLINICAL SPACE?
MULTI-STATE AND BUREAUCRATIC
CONTROL ACTUALLY GAVE GREATER
AUTHORITY TO ALL DOCTORS -- ORAL
DOCTORS AND (INAUDIBLE) FOR
EDUCATION DEPARTMENTS TO
INCORPORATE EXTENSIVE MEDICAL
POLICY AND TO BOTH ASSESS AND
WHERE POSSIBLE TREAT DEAF SCHOOL
CHILDREN. I ALSO MEANT DEAFNESS
BECAME FORMALLY CLASSIFIED AS A
MEDICAL CONDITION REQUIRING
CERTIFICATION BIOMEDICAL -- IN
ORDER TO RECEIVE SCHOOLING. AND
EDUCATION ALL OF THEM BECAME
IDENTIFIED WITH NATIONALITY, A
WAY OF PROGRESS THROUGH REASON
AND SIGN. WITHIN ALL THESE
TRANSFORMATION, THE ISSUE OF
HEREDITARY DEAFNESS AND
ESPECIALLY HEREDITARY DEAF
MUTISM, APPEAR RESISTANT TO
THESE EFFORTS AND THEREFORE
REQUIRE GREATER ALLIANCE BETWEEN
DEAF EDUCATOR AND AUDIOLOGISTS
TO FIGURE HOW TO REDUCE THE
GROWING CONDITION OF DEAF
VARIETY THAT SEEM TO BE
UNRESPONSIVE TO MEDICAL
INTERVENTION. NEXT SLIDE PLEASE
THE TRACKING INTERMARRIAGE, ONE
CONCERN THAT WAS RAISED BY THE
ROYAL COMMISSION WAS THIS ISSUE
OF HEREDITARY DEAF MUTISM THAT
WAS ARISING WHEN DEAF PEOPLE
MARRIED OTHER DEAF PEOPLE AND
HAD DEAF CHILDREN. THE
INCREASING RATES OF THESE
MARRIAGES WERE OUTLINED IN
CENSUS OF COURSE AS WELL AS
STATISTICAL STUDIES BY DEAF
FAMILIES CONDUCTED BY
AUDIOLOGISTS AS WELL AS
EDUCATORS AT DEAF SCHOOLS. SO
THESE HE CANS PERT STARTED TO
PLACE STOCK ON INCREASING
HEREDITARY TRANSMISSION OF
DEAFNESS AS EVIDENCE FOR THE
IMPORTANCE OF ORALISM. THE --
BECAME IF DEAF MUTE CHILDREN
WERE LEFT TO THEIR OWN GUISES,
PREDOMINANTLY SIGNING SCHOOL,
THEN THEY WERE MORE LIKELY TO
FORM A COMMUNITY OF LIKE MINDED
SIGNERS WHO ARE UNWILLING IF NOT
CAPABLE OF LEARNING SPEECH AND
HENCE ASSIMILATING INTO THE
BROADER HEARING SOCIETY. NEXT
SLIDE PLEASE. THIS SITUATION WAS
ESPECIALLY CONCERNING IN THE
UNITED STATES AS A METHOD FOR
COMPARISON TO THE UK AS OUTLINED
IN THE WORLD COMMISSION REPORT.
ROAL COMMISSION REPORTS. IT IS
SAID THAT BEFORE EDUCATION WAS
IMPARTED TO DEAF-MUTES, AND
BEFORE THEY WERE CONGREGATED IN
VARIOUS EDUCATIONAL
INSTITUTIONS, HARDLY ANY
INTERMARRIED. IN JAILNY
SWITZERLAND AND ITALY THE --
GERMANY, THE REPORT OF THE ROAL
COMMISSION, PLACES WHERE --
INCIDENCE OF DEAF INTERMARRIAGE
WERE FAR MUCH LOWER THAN IN THE
UNITED STATES OR ENGLAND. AND
ALSO EDUCATORS AT INSTITUTIONS
HAD PREVIOUSLY TABULATED
INCIDENCES OF DEAF
INTERMARRIAGES EUGENICS STARTED
TO RAISE ADDITIONAL FEARS ABOUT
HEREDITY, REPRODUCTION AND
DEGENERACY. THE (INAUDIBLE)
NOTES THAT WHILE EUGENICS WAS
NOT -- SCIENTIFIC WHAT DID --
WHAT LOU'S INTERNATIONAL NETWORK
OF CORRESPONDING SCHOLARS AND
SCIENTISTS WHO ARE INTERESTED IN
IN THIS IDEA OF THE TRANSMISSION
OF HEREDITARY TRAITS AND THE
IMPACT IT WOULD HAVE ON DEAF AND
DISABLED PEOPLE. SO MANY DEAF
SCHOOLS AND EXPERTS STARTED
TABULATING DATA ON EXISTENCE OF
LARGE FAMILIES WHERE GENERATIONS
OF DEAFNESS AND IN ORDER TO
UNDERSTAND HOW MANY OF THE
FAMILY WERE ALSO CHILDREN INTO
THAT SCHOOL. THE LONDON -- FOR
THE DEAF AND DUMB, ONE OF THE
FIRST PUBLIC SCHOOLS IN BRITAIN.
FOR INSTANCE, IN IN 1859 THE
PUBLISHED LIST OF 23 POOR AND
WORKING CLASS FAMILIES WHO HAD
CHILDREN IN THE INSTITUTION.
AMONG 160 CHILDREN WITHIN THIS
23 FAMILIES, 105 WERE DEAF. THE
COMMISSION WERE TAKING STOCK OF
ALL THESE REPORTS, THEY
PRINCIPALLY DREW TESTIMONY FROM
ALEXANDER GRAHAM BELL. NEXT
SLIDE PLEASE. THANK YOU.
EARLIER IN 1883, SIX YEARS
BEFORE THE ROAL COMMISSION
PUBLISHED A REPORT, AT A MEETING
OF NATIONAL ACADEMY OF
SCIENTISTS, BELL HAD RAISED THE
ISSUE OF QUOTE, THE FACT THAT IN
THIS COUNTRY DEAF MUTES MARRIED
DEAF MUTES. THE RESULTING
PUBLICATION OF HIS ARGUMENT
TITLED MEMORY UPON FORMATION OF
DEAF VARIETY OF THE HUMAN RACE
COMBINED EMPIRICAL DATA FROM
AMERICAN RESIDENTIAL SCHOOLS FOR
THE DEAF WITH STATISTICS AND
PROBABILITY TO CONCLUDE THAT
QUOTE, A DEAF VARIETY, WOULD
BECOME INCREASINGLY POSSIBLE AND
THAT THERE WAS NO SIGN OF THE
TREND SLOWING DOWN. SO WHAT WAS
THIS DEAF VARIETY? IT WAS A
GROUP OF DEAF PEOPLE WITH A
CULTURAL IDENTITY IN LANGUAGE OF
THEIR OWN THAT WOULD SEPARATE
FROM THE BROADER HUMAN
POPULATION. BELL ARGUED THAT AS
A -- FROM BROADER SOCIETY, IT
WOULD BE MUCH MORE DIFFICULT TO
APPLY ANY EUGENICS MEASURES TO
RESTRICT THE SEGREGATION OF DEAF
PEOPLE. SO HE ENCOURAGE DEAF
PEOPLE TO SOCIALIZE IN HUMAN
COMMUNITY, ADVOCATED SPEECH OVER
SIGN LANGUAGE, BUT HE ARGUED
THAT ANY FORM OF RESTRICTIONS OR
LEGAL BANNED ON DEAF
INTERMARRIAGE WOULD ACTUALLY
PROMOTE IMMORAL BEHAVIOR. AND
THEREFORE, POSSIBLY EVEN FURTHER
INCREASE THE RATES OF HEREDITARY
DEAFNESS. BELL CLAIMED
PREVENTIVE MEASURES WERE MORE
LIKELY TO SUCCEED. PREVENTION
WAS ESPECIALLY SUCCESSFUL WHEN
THEY WERE DISGUISED AS
EDUCATIONAL REFORM. WHAT WAS THE
PREVENTION METHODS? THE
RESIDENTIAL SCHOOL, FORD BY
USING SIGN LANGUAGE IN THE
CLASSROOM. PROHIBIT DEAF ADULTS
FROM P BECOMING TEACHERS OF DEAF
CHILDREN. AND PROVIDE MEDICAL
EXPERTS TO EXAMINE AND TREAT ANY
NEW DISEASE OR HEARING ISSUES AS
EARLY AS INFANCFANCY. SO BELL AD
THAT COLLECTIVELY THIS REFORM
WOULD ENCOURAGE DEAF PEOPLE POO
FOCUS ON DEVELOPING THEIR SPEECH
SKILLS AND MAKE THEM
FIGURATIVELY LESS DEAF. AND HIS
PERSPECTIVE ACTUALLY LED TO THE
MEMOIR BECAUSE AN OBJECT STUDY
ON DEAF HISTORY AND DREW THE
WRATH OF O DEAF PEOPLE WHO
CONSIDERED BELL EUGENICS VIEW AS
DAMAGING TO DEAF COMMUNITIES.
BUT BELL REPEATED IN NEWSPAPERS,
MAGAZINES, AND SPEAKING
WORLDWIDE, IT WAS CONSIDERED TO
BE CUTTING EDGE RESEARCH AT THE
TIME AND BELL DREW PLENTY OF --
FROM STATISTICAL STUDY AND HE
VIEWED DEAF PEOPLE AS AN IDEAL
SUBJECT FOR TRACING HOW
CONTINUOUS SELECTION ACTUALLY
INFLUENCE EVOLUTION. SO WHAT
THIS SCIENTIFIC STAND IS NOT
ACTUALLY NEW TO PEOPLE WHO WORK
WITH DEAF CHILDREN AND DEAF
COMMUNITIES, BELL REPLICATION AS
SCIENTIST AS HE DREW WIDER
PUBLIC ATTENTION TO THE
CONCERNING AND WORRYING ISSUE OF
HEREDITARY DEAFNESS. SO FOR
EXAMPLE, HE STUDIED 757 CASES OF
INTERMARRIAGE BETWEEN DEAF MUTE
PEOPLE. AND FOUND THAT 1,514
PEOPLE WHO INTERMARRY, 1400 WERE
DEAF MUTE, 5% OF WHOM WENT ON TO
MARRY HEARING PEOPLE, WHILE 95%
MARRIED OTHER DEAF PEOPLE AND
HAD THEIR OWN DEAF CHILDREN. THE
ROAL COMMISSIONERS CONSIDERED
BELL'S STUDY AND SUPPORTING
RESEARCH AS SUFFICIENT EVIDENCE
TO PROVE THAT THE REAL DANGER OF
INCREASE CONGENITAL DEAFNESS,
EVEN WHILE DEAF PEOPLE ALSO
TESTIFIED THAT THIS CONCERN
WASN'T AS WORRYING AS BELL MADE
IT OUT TO BE. SO THE ROAL
COMMISSIONERS RECOMMENDED THAT
INTERMARRIAGES OF HEREDITARY
DEAF MUTE PEOPLE SHOULD BE
STRONGLY DISCOURAGED. THE
RESOLUTION WAS ALSO PART OF
THESE BROADER CHANGES IN WHICH
THE ISSUE OF WHO PAYS FOR DEAF
EDUCATION AS WELL AS EDUCATION
FOR BLIND AND PHYSICALLY
DISABLED CHILDREN, BECOME
INCREASING COST WILL BE BURDEN
BY TAX PAYERS OR THE STATE.
NEXT SLIDE PLEASE. SO FOR
EXAMPLE, RECORDS FROM THE LONDON
COUNTY COUNCIL, ONE OF THE
EDUCATIONAL BRANCHES INDICATED
THAT THE COST OF EDUCATING A
DEAF CHILD AMO AAMOUNTED TO 31
POUNDS PER YEAR COMPARED TO 5
POUNDS SPENT ON ORDINARY CHILD.
AND THIS REPORT ARGUED IF THE
NUMBERS OF DEAF CHILDREN
CONTINUES TO INCREASE,
ESPECIALLY THROUGH HEREDITARY
DEAFNESS, TRACKED THROUGH DEAF
INTERMARRIAGES, AND FORWARD
MEDICAL INTERVENTION WAS LARGELY
INEFFECTIVE, THEN EUGENICS
TEXTBOOK ASSERTED, DEAFNESS WILL
BECOME A VERY EXPENSIVE
CONDITION FOR ANY COMMUNITY TO
MAINTAIN. EVEN IF THE CHILDREN
WHEN INDICATED ARE ABLE TO
SUPPORT THEMSELVES. BUT NOT ALL
EXPERTS AGREED WITH THIS
PERSPECTIVE. NOR DID THEY AGREE
THE THREAT OF DEAF HEREDITARY
DEAFNESS WOULD REALLY DEEPLY
CONCERNING. AUTHOR HENRY BATHER
THE SECRETARY OF THE ROAL
ASSOCIATION IN AID OF THE DEAF
AND DUMB, WAS ONE OF TWO DEAF
SIGNERS INVITED TO TESTIFY IN
FRONT OF THE ROAL COMMISSION. HE
STRONGLY OPPOSED BELL'S FINDINGS
AND DESCRIPTION AS DID AMERICAN
EDUCATOR EDWARD GALLAUDET.
HOWEVER, BECAUSE BELL TIES THIS
IDEA OF CONVECTION OF DEAFNESS
-- CONVENTION OF DEAFNESS TO THE
HEALTH OF THE NATION, STATISTICS
PROVIDED BY DEAF PEOPLE,
SKEPTICAL EDUCATORS AS WELL AS
COMMISSIONERS FOR THE DEAF,
STARTED TO INCLUSIVELY QUESTION
BELL'S EVIDENCE AND THEY SHOWED
THAT RATHER THAN DEAF
INTERMARRIAGES PRODUCING HIGHER
RATES OF DEAF CHILDREN, THEY
ACTUALLY FOUND THE OPPOSITE WAS
TRUE. IN THAT DEAF PEOPLE
MARRYING DEAF PEOPLE ONLY LED
INTERMITTENTLY LED TO DEAF
CHILDREN. MEANWHILE FOR
AUDIOLOGISTS THIS BROADER
DISCOURSE ABOUT STATISTICS AND
DEAF EDUCATION PROVIDED AMPLE
OPPORTUNITIES TO DEMONSTRATE THE
IMPORTANCE OF THE PROFESSION.
AND THE ROLES STARTED TO BECOME
MORE PROFOUND AFTER THE 1893
ELEMENTARY EDUCATION ACT AND THE
LATER PROVISION WHICH COMPELLED
SCHOOL BOARDS TO PROVIDE FOR
BLIND DEAF EPILEPTIC AND
DISABLED CHILDREN. NEXT SLIDE
PLEASE. MEDICAL EXPERTS
CONTROLLED THE PROCESS QUASI EWE
GYPSY APPROACH FOR MANAGING
DISABILITY AND STATE FUNDED FOR
EDUCATION. THE OTOLOGIST
ASSESSED THE DEAFNESS AND WHERE
POSSIBLE RECOMMENDED MEDICAL OR
SURGICAL INTERVENTION, TO REMOVE
THE TONSILS AND ADENOIDS. AND
THE AIM TO CORRECT THE MEDICAL
ISSUE,PRIOR TO A DEAF CHILD
BEING STUDIED FOR. ESPECIALLY
LOOKED FOR SYMPTOMS OF
HEREDITARY DEAF MUTISM TO
DISCOURAGE INTERMARRYING. SO
MANY OTOLOGISTS GENERALLY AGREE
PREVENTION AND TREATMENT OF EAR
ISSUES FOR ESSENTIAL FOR
IDENTIFYING POCKETS OF DEAFNESS
FOR INTERVENTION. SOME TOOK THE
MORE EXTREME VIEW. ONE OF THE
MOST OUTSPOKEN OTOLOGISTS WAS
(INDISCERNIBLE). IN HIS ROLE AS
A ORAL SURGEON AND MEDICAL
INSPECTOR TO THE LONDON COUNTY
SCHOOL, HE HAD AMPLE OPPORTUNITY
TO JUDGE THE WORKING OF THE
SYSTEM OF DEAF EDUCATION. AND HE
ARGUED THAT THE ENTIRE SYSTEM OF
DEAF EDUCATION NEEDED TO BE
REORGANIZED BECAUSE TOO MANY
DEAF CHILDREN WERE BEING PLACED
IN DEAF SCHOOL WITHOUT PROPER
INTERVENTION BY MEDICAL EXPERT
WHEN THEY COULD OTHERWISE BE
BENEFITING FROM SPEECH TRAINING
AND MAKING (INAUDIBLE). NEXT
SLIDE. UNDER THE SYSTEM HE
CLAIMED ALL CHILDREN AT THE LOP
DON COUNTY COUNCIL SCHOOL NEED
TO HAVE A HEARING PRELIMINARY
EXAM IN THE FIRST YEAR BY A
SCHOOL DOCTOR OR NURSE UNDER HIS
SUPERVISION AND THEN CHILDREN
WHO WERE PRELIMINARY DIAGNOSED
OR SUSPECTED TO BE DEAF, WERE
RECOMMENDED TO HIM OR THE
MEDICAL DEPARTMENT FOR
TREATMENT. WHAT HIS METHOD
CREATED WITH MERGING WHAT HE
CALL EFFECTIVE EDUCATION AND
EFFECTIVE TREATMENT, IN ORDER TO
DRASTICALLY DIMINISH A NUMBER OF
DEAF CHILDREN WITH HEREDITARY
DEAFNESS GOING INTO SCHOOLS
WITHOUT PROPER EXAMINATION
HOWEVER, IT WASN'T DIMINISHING
THE VALUE OF DEAF EDUCATION OR
EDUCATION FOR DEAF CHILDREN. HE
CLAIMED THAT QUOTE HEARING IS
THE MOST IMPORTANT EDUCATION
SENSE BECAUSE IT CHANNELS
THROUGH WHICH THE CHILD OBTAINS
THE SPEECH AND LANGUAGE WHICH HE
CANNOT THINK AND REASON CLEARLY
SO HE CLAIMED THAT MEDICAL
FAILURE TO PROPERLY ASSESS DEAF
AND DEAF MUTE CHILDREN FOR
LANGUAGE AND SPEECH ACTUALLY LED
TO INCREASE COST THAT COULD BE
BURDENED BY THE TAXPAYER. THE
RECENT STATISTICS SHOW THAT THE
COST OF EDUCATION, PER HEAD, OF
THE DEAF-MUTES IN THE LONDON
COUNTY COUNCIL SCHOOLINGS IS 31
POUNDS PER ANNUM, THIS INCLUDES
BOTH RESIDENTIAL AND DAY
SCHOLARS. AND HE GOES ON TO
EXPLAIN THAT IF THEY DEDUCT THE
RESIDENTIAL SCHOOL THE COST OF
23 POUNDS PER YEAR. IN
COMPARISON QUOTE, THE EXPEN OF
EDUCATING THE NORMAL CHILD IN
ELEMENTARY SCHOOLS IS 5 POUNDS
PER ANNPER ANNUM. SO HIS ARGUMEE
ARE PAYING SO MUCH MORE FOR DEAF
EDUCATION WHEN WE COULD ACTUALLY
DEVISE MEDICAL PROVISION TO
REDUCE THAT COST. HE WAS A EWE
GENERAL CYST AND HE CLAIMED --
EUGENICS, AND HE CLAIMED IT WAS
POSSIBLE TO PREVENT HEREDITARY
DEAFNESS HE SUGGESTED THAT
STERILIZATION WAS ANOTHER
OPTION. AND THAT HAS
FUNCTIONALLY FOR EUGENICS
REACHED ORALIZATION POSSIBLE
WITH MINIMUM OF DANGER. SO JUST
TO WRAP UP, WHAT IS THE HISTORY
OF STATISTICAL STUDY CONCERNED
ABOUT HEREDITARY DEAFNESS TELL
US? FOR ONE THING, IT
UNDERSCORES HOW EUGENICS DOES HE
HAVELY INFORMS MUCH OF MODERN
MEDICINE AND DEAF EDUCATION, AND
THAT STATISTICAL DATA THAT WAS
COMPILED -- WHAT WOULD CALL
HEREDITARY DEAFNESS WAS NOT
ADEQUATELY MANAGED THROUGH
EDUCATION, MEDICAL SURVEILLANCE
AS WELL AS GOVERNMENT AND STATE
INTERVENTION. AND SECONDLY,
DESPITE THIS RICH HISTORY OF
SIGN LANGUAGE THAT COMMUNITIES
AND DEAF CULTURE, DEAFNESS WAS
CREATED AS A MEDICAL PROBLEM
THAT REQUIRED A FIX. AND THIS
ABLEISM HAS IMPACT AND STILL
CONTINUES TO IMPACT HOW DEAF
PEOPLE ACCESS MEDICAL CARE OR
LACK THEREOF, ESPECIALLY WHEN NO
COME BY ACCOMMODATIONS ARE
PROVIDED FOR COMMUNICATION. AND
THE INCREASINGLY INEQUITIES AND
BARRIERSES DEAF PEOPLE FACE AND
CONTINUE TO FACE, ARE FURTHER
COMPLICATED BY THE EUGENICS
AGENDA OF ELIMINATING DEAFNESS
OR VERY LEAST PREVENTING A DEAF
VARIETY AS BELL CAUTIONED WHO
MADE YOU WILL ULTIMATE GOAL OF
MEDICAL SCIENCE. FAR FROM BEING
THE DISSTOPIAN SCENARIO, THE
EUGENICS PERSPECTIVE IS STILL
VERY MUCH EMBEDDED IN SOCIETY
THAT PROMOTES DEAFNESS COURSE AS
A SOLUTION TO CELEBRATE AS A
TRIUMPH OF SCIENCE. THANK YOU.
>>THANK YOU SO MUCH MS. VIRDI.
I BELIEVE WE HAVE TIME FOR A FEW
QUESTIONS AND I ENCOURAGE OUR
AUDIENCE TO HAVE -- THAT YOU
TYPE ANY QUESTIONS THAT THEY CAN
IN THE Q&A BOX. SO ONE QUESTION
TO START OFF IS DID BELL'S STUDY
MAINLY EFFECT ENGLISH SPEAKING
HUMANITIES OR WAS THAT
PERCEPTION EXTENDED ACROSS
COMMUNITIES USING OTHER
LANGUAGES AND ARE THERE ANY
EXAMPLES THAT WE KNOW OF WHERE
BARRIERS TO INTERMARRIAGE WERE
NOT PLACED AND DEAF COMMUNITIES
FOLLOWED A DIFFERENT TRAJECTORY
OVER GENERATIONS?
>>THAT IS A WONDERFUL QUESTION.
INDEED BELL WAS INFLUENCIAL, IT
CONFIRMED WHAT GERMAN EDUCATORS
WERE ALREADY THE HERD THEY HAD
IN PLACE IN -- METHOD THEY HAD
IN PLACE IN DEAF EDUCATION AND
OLE TO COMPILE STATISTICS TO SEE
IF WHAT THEY WERE OBSERVING IN
THE SCHOOLS COULD CONFIRM AND
VALIDATE BELL'S RESEARCH.
HOWEVER, SCHOOLS FOR THE DEAF
CHILDREN LIKE GALLAUDET
UNIVERSITY AND SOME SCHOOLS IN
FRANCE ARGUED THE OPPOSITE.
THEY CLAIM THAT THEIR STATISTICS
DID NOT -- COULD NOT VERIFY WHAT
BELL WAS SEEING, IN OTHER WORDS,
WHILE THEY SAW HEREDITARY
DEAFNESS THROUGH GENERATIONS OF
DEAF INTERMARRIAGE, THEY DIDN'T
SEE THE PERCENTAGE AS WORRYING
AS BELL WAS AND IT WASN'T A
CONCERN THAT WERE TERRIFYING
ENOUGH TO WARRANT PREVENTIVE
MEASURES BELL WAS ADVOCATING
FOR. FURTHER STUDIES IN THE
EARLY 20TH CENTURY CONFIRM THAT
THE RATE OF HEREDITARY
TRANSMISSION TO DEAF
INTERMARRIAGE WAS ACTUALLY MUCH
MUCH LOWER THAN BELL FOUND.
>>I THINK I WAS THINKING JUST
ABOUT THE QUESTION AND YOUR
RESPONSE WHERE IN THE FOR
EXAMPLE IN THE PACE OF THE CHECK
EUGENICS MOVEMENT THERE WAS
SIGNIFICANT INFLUENCE OF BELL
BUT THAT IS ACTUALLY A VERY
INTERESTING QUESTION OF HOW THIS
WAS PERCEIVED, THIS EUGENICS WAS
PERCEIVED THEN TRANSMITTED
ACROSS IN CERTAIN EUROPEAN
COMMUNITIES AS WELL. THAT WOULD
BE A VERY OPEN AND VERY PROFOUND
RESEARCH QUESTION I THINK FOR
FUTURE INVESTIGATORS. ONE MORE
QUESTION THAT I HAVE. HOW DO
PEOPLE WHO BECOME DEAF DUE TO
TRAUMA OR DISEASE LATER IN LIFE
INTEGRATE WITH THE CONGENITAL
DEAF COMMUNITY AND YOUR THOUGHTS
ON THAT AND ALSO HISTORICAL
PERSPECTIVE AS WELL?
>>THAT IS GREAT QUESTION, THAT
IS ALSO A HISTORICAL QUESTION
HOW ORAL SURGERY TRANSFORM OVER
THE COURSE OF THE 19TH CENTURY.
ORIGINALLY IN THE 1800s THEY
LUNCHED ALL GROUPS TOGETHER BUT
AS ALSO BECAME MUCH MORE
SPECIALIZED THE PARTICULARLY
ABLE TO CREATE DIFFERENT
CATEGORY OR TYPES OF HEARING
LOSS AND TYPES OF CONDITIONS
THAT WOULD AFFECT A DEAF PERSON
OVERALL WELL BEING. THEY DID NOT
CONSIDER PEOPLE WHO LOST HEARING
-- ESPECIALLY AFTER THE
LANGUAGE, CHILDREN WHO WERE BORN
HEARING AND THEN ABLE TO SPEAK
BUT LOST HEARING LATER, DUE THE
DISEASE OR TRAUMA, AS WELL AS
ADULTS WITH LATE ONSET DEAFNESS.
THEY LUNCH THEM UNDER ACCIDENT
OR ILLNESS. AND THEREFORE, MORE
LIKELY TO BENEFIT FROM MEDICAL
INTERVENTION. SO ONES WHO ARE
BORN DEAF OR ONES WHO LOST THE
HEARING BEFORE LANGUAGE ARE MORE
DIFFICULT CASE. AND MANY ALSO DO
BELIEVE THIS GROUP NEEDED MUCH
MORE INVASIVE MEDICAL
INTERVENTION AND IF INTERVENTION
WAS NOT POSSIBLE, THEN THIS WAS
A GROUP MOST LIKELY TO BENEFIT
FROM DEAF EDUCATION WHETHER
THROUGH SIGN SPEECH OR MIX OF
THAT.
>>SO WE HAD A QUESTION IN THE
CHAT. I'M READING NOW HOW DO YOU
THINK BELL AND THE EUGENICS
MOVEMENT CONTRIBUTED TO
ALIENATING THOSE WITH HEARING
LOSS WHO ARE NOT CULTURALLY DEAF
BUT WHOM CONSTANTLY FEEL LEFT
OUT OF BOTH HEARING AND DEAF
CULTURE, HEARING AND DEAF ARE
BOTH IN QUOTE.
>>THAT IS A WONDERFUL QUESTION.
I APPLY MYSELF TO THAT AS WELL
BECAUSE I'M NOT FLUENT IN ASL
AND TOO DEAF TO BE PART OF THE
HEARING CULTURE EVEN THOUGH I
SPEAK. BELL'S WORK I THINK
ESPECIALLY WITHIN THE BROADER
EUGENICS MOVEMENT, COULDN'T
UNDERSTAND THAT TO BE CULTURALLY
DEAF WAS TO SEGREGATE YOURSELF
FROM THE BROADER HEARING
SOCIETY. EFFECTIVELY HE PUSHED
FORWARD THIS IDEA OF BINARY,
THAT YOU ARE HEARING OR YOU ARE
DEAF AND NO RANGE IN BETWEEN.
EVEN THOUGH AS I MENTIONED TO
DR. DONAHUE'S QUESTION EARLIER,
THAT OTOLOGISTS WERE CREATING
DIFFERENT CATEGORIES AND TYPES
OF DEAFNESS. HOWEVER, THE
CREATION OF A BINARY IMPLIED
THAT DEAFNESS WAS NORMAL STATE
TO BEING HUMAN. AND EFFECT OF
BINARY WAS SO PROFOUND PROFOUND
THAT BY 1820s, ESPECIALLY
ADULTS WHO LOST HEARING FROM
LATE ONSET DEAFNESS,S FROM
DISEASES AND INCREASINGLY FROM
WORLD WAR I SOLDIERS WHO CAME
BACK DAMAGED FROM THE
BATTLEFIELD, CREATED A NEW
CATEGORY OF HEARING. THEY CLAIM
OTHERWISE NORMAL PEOPLE WHO HAD
A MEDICAL CONDITION BUT NOT
SEGREGATING FROM SOCIETY SO WE
WENT FROM ONE BINARY DEAFNESS
AND HEARING TO ODE ONE. DEAF OR
HARD OF HEARING. -- TO ANOTHER
ONE DEAF OR HARD OF HEARING AND
THAT BECAME THE APPLICATION FOR
MUCH OF THE 20TH CENTURY IN
TERMS OF CREATING DEAF WITH A
CAPITAL D AS AN OUTLIER AND HARD
OF HEARING PEOPLE AND MORE
NORMAL AND MORE LIKELY TO
ASSIMILATE TO SOCIETY. HOWEVER,
THIS BINARY ACTUALLY COUNTER
ACTED THE EXPERIENCES OF MANY
DEAF PEOPLE. THERE WERE DEAF
PEOPLE WHO ARE BORN DEAF BUT
LATER PREDOMINANTLY HEARING
SOCIETY AND -- HARD OF HEARING
PEOPLE WHO DID SIGN, WHO WERE
PART OF DEAF COMMUNITY SO YOU
KIND OF HAVE WHAT I ARGUE IS AN
AUDITORY SPECTRUM. BUT IT DOES
INDEED COME FROM THIS CREATION
OF A BINARY. THIS OPPOSITION OF
NORMAL AND ABNORMAL. THAT LEMES
YOU DEFINE HOW DEAF PEOPLE,
MEDICAL EXPERTS, EDUCATORS
SOCIETY IN GENERAL, WERE
THINKING ABOUT WHAT DISABILITY
MEANT AND WHERE DISABLED PEOPLE
COULD FIT INTO SOCIETY. THANK
YOU FOR THAT QUESTION.
>>SO I THINK THAT IS ALL THE
TIME THAT WE HAVE FOR QUESTIONS
BUT I JUST WANTED TO FOLLOW-UP
ON A POINT THAT YOU JUST MADE
THAT I THINK IS REALLY BRILLIANT
ABOUT THIS -- THE BINARY THAT IS
INTRODUCED BY EUGENICS, ALSO BY
ABLEISM. AND I THINK IT IS
IMPORTANT TO REALIZE THAT FOR
MANY DISABLED PEOPLE, MANY
MARGINALIZED COMMUNITIES,
BINARIES REALLY DON'T WORK AND
ONE OF THE FUNCTIONS OF THE
EUGENICS MOVEMENT IS TO PLACE
PEOPLE IN ONE CATEGORY OR THE
OTHER. THIS IS TOTALLY
UNREALISTIC AND VERY MUCH A
FEATURE OF IN MANY WAYS OUR
SOCIETY TODAY UNFORTUNATELY.
THANK YOU SO MUCH MANY MS. VIRDI
FOR YOUR WONDERFUL IMPACTFUL
LECTURE. NOW I HAVE THE PLEASURE
OF INTRODUCING DR. TRACY KING
WHO IS GOING TO BE MODERATING A
PANEL. SO OVER TO YOU, TRACY,
THANKS VERY MUMP.
>>THERE THANK YOU, VERY MUCH TO
ALL OF YOU. MY NAME IS TRACY
KING. I'M A MEDICAL OFFICER IN
THE INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES
BRANCH. HERE AT THE EUNICE
KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT. OR NICHD. FOR
VISUAL DESCRIPTION I'M A CHINESE
WOMAN WITH SHORT CURLY BLACK
HAIR AND I'M WEARING A BLACK
SWEATER AND I'M SITTING IN FRONT
OF A BLUE ZOOM BACKGROUND. IT IS
MY REAL PRIVILEGE TO BE
MODERATING TODAY'S SESSION ON
ABLEISM IN THE SCIENTIFIC WORK
FORCE. I WOULD LIKE TO SPEND
JUST A MINUTE EXPLAINING OUR
PLANNED FORMAT FOR THIS SESSION
I'M GOING TO INTRODUCE EACH OF
THE THREE PANELISTS NOW BEFORE
THE PANEL GETS UNDERWAY, EACH
WILL PRESENT A BRIEF SLIDE
PRESENTATION REFLECTING THE
UNIQUE EXPERIENCE AND EXPERTISE
ON ABLEISM IN THE SCIENTIFIC AND
CLINICAL WORK FORCE. THEN I WILL
MODERATE A ROUND TABLE STYLE
DISCUSSION AMONG OUR PANELISTS
TO EXPAND ON SOME OF THE POINTS
COMING OUT OF THEIR FORMAL
PRESENTATIONS. FINALLY, WE WILL
TRY TO ANSWER ANY QUESTIONS
SUBMITTED BY WORKSHOP ATTENDEES
SO NOW I WOULD LIKE TO INTRODUCE
OUR PANELISTS FOR THIS SESSION.
TO MY ZOOM VIDEOCAST COLLEAGUES,
I SEE CHRIS'S WINDOW STILL
SHOWING IN MY ZOOM WINDOW. SO
FOR THE PANELISTS, FIRST I WOULD
LIKE TO INTRODUCE PEPPAR CYR.
M.D. Ph.D. STUDENT AT
WASHINGTON UNIVERSITY IN ST.
LOUIS. SHE'S PASSIONATE ABOUT
DISABILITY INCLUSION IN MEDICINE
ENSURING DISABLED PATIENTS
RECEIVE HIGH QUALITY CARE AND
MAKING MEDICINE ITSELF MORE
ACCESSIBLE AND WELCOMING TO
DISABLED PROVIDERS. HER THESIS
RESEARCH IS USING ADVANCED
NEUROIMAGING IN VERY PRE-TERM
INFANTS TO BETTER PREDICT
INDIVIDUAL MOTOR OUTCOMES
THROUGH AGE TEN YEARS. A LONG
SIDE HER STUDIES PEPPAR IS
ACTIVELY INVOLVED IN WORK WITH
THE AMERICAN ACADEMY OF
PEDIATRICS COUNCIL ON CHILDREN
WITH DISABILITIES AND MEDICAL
SCHOOLS TEACH ABOUT DISABILITY.
NEXT I WOULD LIKE TO INTRODUCE
DIANA CEJAS, PEDIATRIC
NEUROLOGIST AND FACULTY AT THE
CAROLINA INSTITUTE FOR
DEVELOPMENTAL DISABILITIES AT
THE UNIVERSITY OF NORTH CAROLINA
AT CHAPEL HILL. HER CLINICAL
WORK AND RESEARCH FOCUS
IMPROVING CARE DELIVERY AND
HEALTH OUTCOMES FOR CHILDREN AND
YOUNG ADULTS WITH
NEURODEVELOPMENTAL DISABILITIES.
SINCE SURVIVING CANCER AND A
STROKE DURING HER RESIDENCY, DR.
CEJAS DEVOTED MUCH OF HER CAREER
TO PATIENT ADVOCACY AND
IMPROVING COMMUNICATION BETWEEN
HEALTHCARE PROVIDERS AND THE
DISABILITY COMMUNITY.
PARTICULARLY YOUNG DISABLED
PATIENTS OF COLOR. OUR THIRD
PANELIST TODAY IS PETE POULOS,
M.D. DEGREE AT UNIVERSITY OF
TEXAS MEDICAL SCHOOL HOUSTON. HE
COMPLETED HIS INTERNAL MEDICINE
RESIDENCY AT UNIVERSITY OF
CALIFORNIA SAN FRANCISCO IN
2002. HE STAYED AT UCSF AS
GASTRO ENTEROLOGY FELLOW BUT
DECIDED TO RETRAIN IN RADIOLOGY
AFTER A SPINAL CORD INJURY FROM
2003. AS INCOMPLETE QUADRIPLEGIC
HE DID STANFORD UNIVERSITY AND
FACULTY RADIOLOGY AND GASTRO
ENTEROLOGY AND HEPATOLOGY. IN
2018 HE FOUNDED THE STANDARD
ALLIANCE FOR DISABILITY
INCLUSION AN EQUITY, HE SERVES
AS CO-CHAIR. IN THAT ROLE HE
ADVOCATES FOR STUDENTS AND
HEALTHCARE PROVIDERS WITH
DISABILITIES AND FOR HEALTH
EQUITY FOR DISABLED PATIENTS.
SO WITH THAT, IT IS MY PLEASURE
TO TURN OVER TO OUR FIRST
PRESENTER WHO WILL BE PEPPAR
CYR.
>>SO I'M PEPPAR CYR. BRIEF
DESCRIPTION, I'M A WOMAN IN MY
LATE 20s, WITH A MULTI-RACIAL
BACKGROUND, WITH LIGHT SKIN AND
STRAIGHT DARK HAIR THAT IS ABOUT
HALF PULLED BACK. AND I'M
WEARING A BLACK SHORT SLEEVE
DRESS WITH A SKELETON NECKLINE.
TODAY I AM TALKING ABOUT
EXPERIENCES OF DISABLE AND
MEDICAL GRAD STUDENTS, OTHERWISE
UNIQUELY QUALIFIED DISABLED
MEDICAL AND GRADUATE STUDENTS.
SO I WILL START THE TALK BY THE
MAIN POINT WHICH IS DISABLED
STUDENTS BRING UNIQUE VALUE TO
MEDICINE AND SCIENCE BUT MUST
STRUGGLE AGAINST ABLEISM TO DO
IT. HOWEVER CHANGE IS HAPPENING
IN PART PUSHED FORWARD BY
DISABLED STUDENTS THEMSELVES.
SO I WANT TO START BY ASKING YOU
TO IMAGINE AN APPLICANT MAYBE TO
MEDICAL SCHOOL, RESIDENCY
GRADUATE SCHOOL, POST DOC,
WHATEVER IS APPLICABLE TO YOU.
AND AS YOU READ THIS APPLICATION
YOU MAYBE HAVE INTERVIEW YOU
LOOK AT THE IMPRESSION. THIS
PERSON IS SELF-AWARE, PROACTIVE,
PERSEVERED, THEY SET APPROPRIATE
GOALS AND MAKE USE OF SOCIAL
SUPPORT SYSTEMS AND EMOTIONAL
COPING STRATEGIES TO REACH THOSE
GOALS. NOW, MY OPINION THIS
SOUNDS LIKE A GOOD APPLICANT AND
SOMEONE TO GET TO KNOW FURTHER
AND BRING INTO MY TEAM OR
PROGRAM. BUT I DIDN'T COME UP
WITH THIS LIST OF ATTRIBUTES OUT
OF NOWHERE. THIS IS BEEN FOUND
TO BE SET OF ATTRIBUTES SEEN
AMONG WHAT THE ARTICLE
CONSIDERED SUCCESSFUL DISABLED
PEOPLE. IF ONE IS GET FOG THE
POINT AFTER APPLYING TO MEDICAL
OR GRADUATE SCHOOL I WOULD ARGUE
THEY HAVE ACHIEVED A CERTAIN
MEASURE OF SUCCESS AND WHEN YOU
ARE LOOKING APPLICANT POOL AND
YOU SEE SOMEONE WHO DISCLOSES
SOMEWHERE A DISABILITY, YOU
SHOULD BE AWARE THESE QUALITIES
SOME SUBSET ARE LIKELY ALREADY
PRESENT IN THIS APPLICANT. BUT
EVEN BEYOND SOME OF THE PIECES
THAT MAYBE APPLICABLE ACROSS
FIELDS NO MATTER WHAT YOU ARE
APPLYING TO, I BELIEVE DISABLED
STUDENTS BRING A SPECIFIC UNIQUE
VALUE INTO MEDICINE AND SCIENCE
IN PARTICULAR. SO FOR MEDICINE,
BUILDING ON PREVIOUS WORK,
AROUND CONCORDANCE IN IDENTITY
BETWEEN PATIENTS AND PROVIDERS
FOR RACE AND ETHNICITY, THERE'S
MORE RECENT EFFORTS TO DO
QUALITATIVE RESEARCH TO SHOW
THESE FINDINGS SEEM TO HOLD UP
IN THE DISABLED POPULATION. OF
GREATER BETTER RELATIONSHIPS
BETWEEN THE PATIENTS AND
PROVIDERS AND POTENTIALLY ALSO
BETTER OUTCOMES. THERE IS ALSO
RESEARCH WITH MEDICAL STUDENTS
SHOWING DISABLED MEDICAL
STUDENTS WHEN GIVEN
QUESTIONNAIRES ABOUT DIFFERENT
ASPECTS OF BURN OUT COMPARED TO
PEERS DISABLED STUDENTS SHOW
HIGHER RATES OF EXHAUSTION BUT
ALSO HIGHER SCORES FOR EMPATHY
EVEN COMPARED THE THEIR
NON-DISABLED PEERS. BRINGING IN
THAT PIECE OF PATIENT
UNDERSTANDING AND EMPATHY WE
TALK ABOUT IN COMMUNITY STARTING
TO SHOW UP IN THE DATA. WHILE I
DON'T HAVE A CITATION FOR THIS
PIECE, I DO WANT TO HIGHLIGHT A
LOT OF THE WORK THAT I HAVE SEEN
AROUND MAKING PATIENTS FACES
MORE ACCESSIBILITY SPACES MORE
ACCESSIBLE AND HEALTHCARE IN
GENERAL MORE ACCESSIBLE OFTEN
SEEMS TO BE GETTING PUSHED
FORWARD BY DISABLED MED CAP
STUDENTS. WITH THAT I WANT TO
HIGHLIGHT THAT THROUGHOUT THIS
ENTIRE PRESENTATION I PUT
CITATIONS INTO EVERYTHING TO
FURTHER BACK UP THE IDEA THAT
THIS IS SOMETHING THAT'S GETTING
STUDIED, SOMETHING THAT IS NOT
JUST LATER WE WILL BE TALKING
MORE ABOUT PERSONAL EXPERIENCES
BUT THIS PART IS BACKED UP BY
EVIDENCE OF VARIOUS KINDS. SO ON
THE SCIENCE SIDE, IT STARTING TO
BECOME A LITTLE MORE ACCEPTABLE
FOR PEOPLE TO TALK ABOUT DOING
WHAT WE CALL PERSONALLY RELEVANT
RESEARCH OR DOING RESEARCH ON A
CONDITION OR POPULATION THAT YOU
MIGHT BELONG TO OR SOMETIMES
OTHER SIGNIFICANT TIES TO.
PARTICULARLY IN PSYCHOLOGY THIS
CAN BE QUITE STIGMATIZED BUT I
BELIEVE THAT IS STARTING TO
CHANGE AS PEOPLE ARE BEGINNING
TO RECOGNIZE THAT DOING RESEARCH
FOR A POPULATION YOU BELONG TO
CAN BRING ADDITIONAL MOTIVATION
AND INSIGHT INTO THE RELEVANT
KINDS OF QUESTIONS INTO SEEING
THE BIGGER PICTURE AND INTO
BEING ABLE TO BUILD SORTS OF
RELATIONSHIPS WITH COMMUNITIES,
THAT WE NEED IN ORDER TO DO THE
KINDS OF COMMUNITY ENGAGED
RESEARCH THAT ALLOW US TO REALLY
ADDRESS MOST SALIENT PROBLEMS TO
THE PEOPLE THAT ARE BEING
STUDIED. THERE IS ALSO BEEN
WORK INDICATING THAT ABLEISM IS
HOLDING SCIENCE BACK EVEN IN
AREAS NOT SPECIFICALLY ABOUT A
PARTICULAR DISABILITY OR
CONDITION, THE PAPERS I'M
SETTING HERE IS EVOLUTIONAL
BIOLOGY AND OKAY PACE SCIENCE
DISABLED AUTHOR ON THE PAPERS
POINT OUT THE WAYS THAT ABLEIST
IDEAS HAVE BEEN LIMITING THE
WAYS WE THINK ABOUT DIFFERENT
ASPECTS OF SCIENCE MORE BROADLY
EVERYTHING I TALK ABOUT TO THIS
POINT HAS BEEN A LITTLE MORE
VAGUE. THERE'S NO NUMBERS HERE.
AND RESEARCH LOOKING AT
APPLICATIONS FOR RESIDENCY
TRAINING HAS SHOWN THAT WE TEND
TO UNDERVALUE THINGS WE CAN'T
PUT NUMBERS ON. I THINK
ESPECIALLY COMING FROM A
SCIENTIST BACKGROUND WE LIKE TO
ME THINGS AND QUANTIFY THEM. WE
DIDN'T QUANTIFY? TEST SCORE SCO.
THAT CAN BE A BIG AREA FOR
DIFFICULTIES FOR DISABLED
STUDENTS SPECIFICALLY AROUND
ACCOMMODATIONS FOR THOSE TESTS.
IN THE 2018, 2019 ACADEMIC YEAR,
RESEARCH FOUND THAT 52% OF
ACCOMMODATION APPLICATIONS FOR
THE USMLE STEP 1, THE FIRST OF
THE SERIES OF LICENSING EXAMS
FOR PHYSICIANS THOSE APPLICATION
WERE DENIED. OF THOSE MORE THAN
HALF RESULTED IN STUDENTS HAVING
TO DELAY PROGRESSION LIEU THROUH
MEDICAL SCHOOL AND OTHERS
APPLICATION DENIED THREE
QUARTERS PROCEEDED TO TAKE THE
TEST WITHOUT ACCOMMODATIONS AND
A THIRD FAILED. A FEW HAD TO
WITHDRAW OR DISMISS FROM MEDICAL
SCHOOL BECAUSE OF THIS. SO WE
ARE LOSING DOCTORS AND
DEMORALIZING PEOPLE BASED ON
THEIR ABILITY TO GET THOSE
ACCOMMODATIONS. AND BEAR IN
MIND THIS 52% IS PERCENT OF
PEOPLE WHO ACTUALLY APPLIED. I
KNOW PERSONALLY PEOPLE WHO HAVE
LOOKED AT THE ONEROUS AMOUNT OF
DOCUMENTATION INVOLVED AS WELL
AS THIS LOW SUCCESS RATE AND
DECIDED NOT TO EVEN APPLY. EVEN
THOUGH PERHAPS THEY HAVE BEEN
GETTING ACCOMMODATIONS IN
MEDICAL SCHOOL FOR YEARS, THEY
HAVE GOOD REASONS TO NEED THEM,
BUT THE SYSTEM MAKES IT TOO
DIFFICULT. IN PARTICULAR,
CONCERNS SOMETIMES ARE YOU
GETTING ACCOMMODATIONS DOING
LESS WORK, IS THIS MAKING THINGS
EASIER BUT HONESTLY YOUR
DISPAYABLED STUDENTS ARE OFTEN
DOING A LOT MORE WORK. SOMETHING
I HEAR IN THE COMMUNITY. THAT
THE TIME, EFFORT AND MONEY
INVOLVED TO GET THAT
DOCUMENTATION FOR YOUR
ACCOMMODATIONS TO PUT MANY THE
APPROXIMATELY -- IN THE
APPLICATION, TO FOLLOW-UP AND
IMPLEMENT PROPLAYER IS
ADDITIONAL BURDEN ON THE
STUDENTS ON TOP OF WHATEVER TIME
AND EFFORT MANAGING THE
DISABILITY ITSELF. THEN BEI
DON'T UNDERSTAND ALL THAT IS
HAVING TO WADE THROUGH ABLEISM
INVOLVED IN BOTH MEDICINE AND
SCIENTIFIC TRAINING. SO ON THE
MEDICAL SIDE ONE BIG OBVIOUS
EXPLICIT PIECES IS TECHNICAL
STANDARDS AN CONCEPT OF
UNDIFFERENTIATED GRADUATE. SO
TECHNICAL STANDARDS OF
STATEMENTS ALL MEDICAL SCHOOLS
ARE REQUIRED TO HAVE AND THEY
LAY OUT WHAT KINDS OF
NON-ACADEMIC REQUIREMENT THEY
CALL THEM FOR AFFILIATING INTO
MEDICAL SCHOOL. SOME CAN BE VERY
SPECIFIC HOW SOMEONE HAS TO BE
ABLE TO SEE OR HEAR OR HOW MUCH
THEY HAVE TO BE BIBLE TO LIFT TO
ENTER MEDICAL SCHOOL. AND THAT
IS -- CAN BE A BIG BARRIER FOR A
LOT OF PEOPLE, EVEN LAW SUITS
AROUND TECHNICAL STANDARDS IN
THE PAST AND WE CAN TALK ABOUT
THIS MORE IN DISCUSSION. AS
WELL AS CONCEPT OF
UNDIFFERENTIATED GRADUATE, THE
IDEA THAT MEDICAL STUDENTS
SHOULD GRADUATE READY TO ENTER
ANY AND ALL SPECIALTIES WHEN
THAT IS NOT WHAT ANYONE DOES IN
THEIR CAREER AN SEEMED VERY
STRANGE TO ME THAT NO MATTER SAY
HOW GOOD PSYCHIATRIST SOMEONE
MIGHT BECOME IF THEY CAN'T PROVE
THEY COULD ALSO MAKE DESENT
SURGEON, PEOPLE WHO SUBSCRIBE TO
THE IDEA OF UNDIFFERENTIATED
GRADUATE SAY THIS PERSON
SHOULDN'T BE IN MEDICINE.
THAT'S ALSO ISSUES AROUND
ABLEISM MANY THE EDUCATIONAL
CONTENT. WE HAVE TALKED BEFORE
ABOUT PHYSICIANS CONSISTENTLY
UNDERESTIMATING QUALITY OF LIFE
IN DISABLED PEOPLE, THOSE
PHYSICIANS THEN GO ON TO TEACH
MEDICAL STUDENTS AND TELL THEM
HOW FOR DIFFERENT KINDS OF
DISABILITIES CAN BE OR TALK
ABOUT DIFFERENT CONDITIONS THAT
MAKE THE STUDENTS UNCOMFORTABLE
WITH THE WAY PEOPLE LIKE THEM
ARE BEING PORTRAYED. ALSO WHEN
IT COMES TIME FOR LICENSURE
APPLICATIONS, CURRENTLY THERE'S
CAN BE QUITE INVASIVE QUESTIONS
PARTICULARLY PSYCHIATRIC HISTORY
PEOPLE STARTED TO CHALLENGE
ABOUT WHY DO WE NEED TO GIVE
THIS LEVEL OF DETAIL FOR THINGS
THAT PEOPLE OFTEN HAVE WELL
MANAGED TO HAVE GOTTEN THIS FAR.
ON THE SIDE IN SCIENCE THERE IS
ISSUES AROUND ACCESSIBILITY IN
LAB LA AND TEACHING
ENVIRONMENTS. STUDENTS MOVE FROM
THE CLASSROOM TO THE LAB
SETTING. THERE'S A LOT OF
DIFFERENT DEMANDS PHYSICAL
SENSORY AND OTHER ASPECTS THAT
PEOPLE SOMETIMES GET QUESTION OH
WOULD IT BE SAFE TO BE IN THE
LAB WITHOUT REALLY STARTING TO
THINK ABOUT WHAT WOULD WE NEED
TO DO TO MAKE THAT HAPPEN. A LOT
MORE THINGS ARE POSSIBLE TO
PEOPLE SOMETIMES THINK.
ATTENDING IN PERSON CONFERENCE
IS A BIG PART OF GETTING TO KNOW
PEOPLE NETWORKING AND LEARNING
FROM FIELD AND IN PERSON
CONFERENCES HAVE ACCESSIBILITY
CONCERNS WHETHER THAT IS ABOUT
THE TRAVEL, THE VENUES, WHETHER
ABOUT THE CROWDS OR THE LIGHTS
OR THE SOUNDS OR AS WE HAVE SEEN
LAST FEW YEARS, THE POTENTIAL
EXPOSURE TO INFECTIOUS DISEASE.
THEN ABLEIST ATTITUDES IN THE
SCIENTIFIC SPACE ABOUT WHAT
KINDS OF PEOPLE CAN BE IN
SCIENCE AS WELL AS THE WAY
DIFFERENT POPULATIONS TALK ABOUT
AS SUBJECTS OF SCIENCE. BUT
THERE IS A NEW GENERATION COMING
UP TO THIS POINT AND IT IS
REALLY EXCITING PARTICULARLY THE
LAST FEW YEARS BECAUSE THERE MAY
ONLY BE SO MANY OPENLY DISABLED
MEDICAL GRADUATE STUDENTS IN ANY
PROGRAM OR INSTITUTION BUT AS
THINGS ARE VIRTUAL THE LAST FEW
YEARS IT HAS BECOME MUCH EASIER
TO FIND EACH OTHER ACROSS THE
COUNTRY AND FORM ORGANIZATIONS
LIKE MEDICAL STUDENTS WITH
DISABILITY AND CHRONIC ILLNESS,
DISABILITY IN MEDICINE MUTUAL
MENTORSHIP PROGRAM ON THE
MEDICAL SIDE AND SCIENCE
ORGANIZATIONS LIKE DISAGE ABLED
AN STEM OR DISABILITY ADVOCACY
RESEARCH NETWORK FOR PSYCHOLOGY
TO SHOW THIS IS REALLY STARTING
TO GROW, STUDENTS ARE STARTING
TO BE ABLE TO PUSH FOR CHANGE. I
WANT TO HIGHLIGHT WITH
APPROPRIATE SUPPORT DISABLED
STUDENTS CAN SUCK SUCCE SUCCEEDN
THEIR ACCESS NEEDS ARE MET HAVE
DEPRESSION AND MEDICAL ERROR
RATES SIMILAR TO NON-DISABLED
PEERS. AS WE TALKED BEFORE
ABOUT THE SOCIAL MODEL OF
DISABILITY WHEN WE SAY
NON-DISABLED PEERS IN A WAY THAT
IS SAYING THEIR PEERS WHO CAN
ACCESS NEEDS ARE BEING MET BY
DEFAULT. SO I THINK AT THIS
POINT WANT TO POINT IT IS HIGHLY
RECOGNIZED LIVED EXPERTISE. IN
TWO WAYS I MEAN IT. ONE TO
RECOGNIZE THE EXPERTISE DISABLED
MEDICAL AND GRADUATE STUDENTS
BRING TO THEIR FIELDS, THE
THINGS THEY LEARNED THROUGH
THEIR OWN LIVES THAT WILL IMPACT
AND IMPROVE THE WAYS THAT THEY
DO SCIENCE AND THEY TAKE CARE OF
PATIENTS. BUT ALSO IN THE SENSE
AND THIS IS PART MY CITATION
REFERS TO, THERE IS AN ARTICLE
BY A LEGAL SCHOLAR CATHERINE
MACK FAR LANE A FEW YEARS BIG
ARGUING THAT THE LEVEL OF
DOCUMENTATION AND MEDICAL
INVOLVEMENT THAT WE CURRENTLY
EXPECT IN THE ACCOMMODATIONS
PROCESS IS NOT REALLY IN LINE
WITH THE LETTER OR THE SPIRIT OF
THE ADA. AND THAT WE MAY BE
BETTER OFF TAKING A LEAF OUT OF
HOW WE HANDLE THESE
ACCOMMODATIONS AND LISTENING TO
PEOPLE WHEN THEY SAY WHAT THEY
NEED AND NOT IMMEDIATELY
ASSUMING THAT WE NEED THIS
VERIFIED BY OUTSIDE PERSON WHO
OFTEN DOESN'T AS I HAVE SEEN IN
HEALTHCARE WE DON'T REALLY LEARN
MUCH ABOUT WHAT KINDS OF
ACCOMMODATIONS SOMEBODY NEEDS
FROM DISABILITY BUT THE PERSON
WITH DISABILITY TYPICALLY DOES
HAVE DECENT IDEA OF WHAT THEIR
ACCESS NEEDS ARE OR AT VERY
LEAST WHEN GIVEN SUPPORT FROM
THEIR SCHOOL OR PROGRAM TO FIND
OUT WHAT THE DEMANDS WILL BE IN
THEIR UPCOMING STAGE OF THEIR
CAREER, CAN WORK TO FIGURE OUT
WHAT THOSE ENTAIL. SO I HAVE A
LOT OF REFERENCES HERE, YOU HAVE
ACCESS TO SLIDES AFTERWARDS TO
LOOK AT THIS WORK. SO THANK YOU
AND THAT IS THE END OF MY
SECTION HERE TODAY.
>>I'M GOING TO BRING UP MY
SLIDES, THANK YOU VERY MUCH. BUT
BEFORE WHAT I BELIEVE IS KIND OF
A TWIN PRESENTATION OR LEAD IN
KIND OF TO WHAT I HAVE BEEN
TALKING ABOUT. LET ME JUST BRING
UP MY SLIDES QUICKLY FOR YOU.
SO MY NAME IS DIANA CEJAS, HI
PRONOUNS ARE SHE HER HERS, BLACK
WOMAN WITH CURLY NATURAL HAIR,
WHO IS SITTING IN FRONT OF A
VERY BLANK WALL IN A ROOM. WHO
IS ALSO WEARING A KIND OF BLANK
BEIGE KIND OF SWEATER. I'M AS
WAS MENTIONED PEDIATRIC
NEUROLOGIST AT THE UNIVERSITY OF
NORTH CAROLINA CHAPEL HILL AND
PRETTY MUCH ALL MY WORK
INCLUDING RESEARCH AND ADVOCACY
IS FOR YOUNG DISABLED PEOPLE
PARTICULARLY YOUNG DISABLED
PEOPLE OF COLOR. ONE REASON THAT
IS IMPORTANT TO ME PERSONALLY
AND PROFESSIONALLY IS BECAUSE OF
MY LIVED EXPERIENCE AS A
DISABLED PHYSICIAN. I USE THE
TERM DISABLED AND TERMS
DISABILITY INTENTIONALLY BECAUSE
AS YOU MIGHT HAVE BEEN ABLE TO
INFER FROM THE PREVIOUS
PRESENTATION, IT IS VERY
UNCOMMON TO BE OPENLY DISABLED
IN MEDICINE. SO ONE OF THE
THINGS THAT I WOULD LOU I CAN TO
TALK ABOUT TODAY TO KIND OF KEEP
THIS CONVERSATION GOING IS ABOUT
EXPERIENCES THAT WE HAVE AS
DISABLED FACULTY, ALSO WHAT KIND
OF REALLY EDUCATION OUR DISABLED
TRAINEES ARE GETTING ONCE IN
MEDICAL SCHOOL, RESIDENCY,
FELLOWSHIP AND EVEN BEYOND. SO
BEFORE WE GET THERE, LET'S TALK
ABOUT LANDSCAPE. WHAT IS GOING
ON, WHAT IS THE REALITY FOR
DOCTORS WITH DISABILITIES? ON
THE ONE HAND THOSE LAST COUPLE
OF SLIDES IN THE PREVIOUS
PRESENTATION WERE HEARTENING
BECAUSE IT IS AMAZING TO SEE WE
HAVE MORE DISABLED PEOPLE
GETTING INTO MEDICINE DOING THIS
WORK AND MORE TRAINEES COMING IN
AND ACTIVELY WANTING TO LEARN
MORE ABOUT DISABILITY. AT THE
SAME TIME YOU CAN SEE THE
NUMBERS HERE THAT ARE ON THIS
SLIDE. WHICH I BELIEVE ARE SOME
OF THE MORE RECENT DATA THAT WE
HAVE ABOUT 3.1% PRACTICING
PHYSICIANS AND 4.6% OF STUDENTS
MEDICAL STUDENTS IN THE UNITED
STATES HAVE A DISABILITIES OF
SOME KIND. YOU CAN COMPARE THAT
WITH THE 20 TO 25% OF ADULTS IN
THE UNITED STATES WITH SOME FORM
OF DISABILITY. TAKE A LOOK AT
THESE NUMBERS AND WONDER WHY IS
IT THERE IS SO FEW DISABLED
PHYSICIANS AND DISABLED MEDICAL
STUDENTS STUDENTS IN TRAINING?
WE CERTAINLY HAVE A LOT OF
REASONS FOR THAT. NUMBER ONE, WE
CAN THINK ABOUT THE WAY ABLEISM
AFFECTS MEDICAL EDUCATION, THE
WAY THAT ABLEISM AFFECTS THE
PIPELINE INTO MEDICINE AND THE
WAY ABLEISM AFFECTS THE
REALITIES FOR PEOPLE ONCE THEY
ARE ABLE TO GET INTO TRAINING
AND FACULTY POSITIONS AS WELL.
WE HAVE TO KNOW ABLEISM DOESN'T
JUST AFFECT OUR PATIENTS, ALSO
AFFECTS PHYSICIANS. AND ONE OF
THE OTHER THINGS I WANT TO
HIGHLIGHT WHICH WE ARE TALKING
ABOUT IN THE Q&A SECTION AND
DISCUSSION SECTION IS THE FACT
THAT THESE NUMBERS WHEN I LOOK I
HAVE TO TAKE INTO ACCOUNT THAT
THEY REFLECT NUMBER OF
PHYSICIANS AND MEDICAL STUDENTS
WHO FEEL COMFORTABLE DISCLOSING
TO RESEARCHERS THEY HAVE A
DISABILITY OF SOME KIND. OF
COURSE WE ARE TALKING MORE ABOUT
DISCLOSURE LATER BUT DISCLOSURE
DISABILITY AND MEDICINE IS
SOMETHING THAT IS EXTREMELY
RISKY AND ALSO EXTREMELY
PERSONAL. AND I ALSO CONTRIBUTES
TO THE FACT THAT OF COURSE I
KNOW DISABLED PHYSICIANS WHO
ABSOLUTELY NEVER DISCLOSE THEIR
DISABILITY BECAUSE OF SOME OF
THE CULTURAL AND OTHER RISKS
THAT ARE AT PLAY. SO SOME OF THE
THINGS RELATED TO CULTURAL
EXPECTATIONS FOR PHYSICIANS IS
JUST THAT WE ARE KIND OF
EXPECTED TO BE SUPER HUMAN. YOU
ARE EXPECTED TO BE ABLE TO MAKE
HIGH LEVEL DECISIONS ABOUT
SOMEBODY'S LIFE THEIR HEALTH
WHEN YOU YOURSELF MAYBE HAVEN'T
EXCELLENT IN 36 HOURS, YOU
HAVEN'T EATEN, MAYBE NOT BEEN
ABLE TO TAKE CARE OF YOURSELF
AND HEALTHCARE NEEDS. BUT YOU
ARE SUPPOSED TO BE OPERATING ON
THE HIGHEST POSSIBLE LEVEL
PHYSICALLY MENTALLY EMOTIONALLY,
WHAT HAVE YOU. AND YOU CAN
IMAGINE LIKE ANYBODY WHO DOESN'T
NECESSARILY FALL INTO THAT
STANDARD, IS SEEN AS LESS THAN.
SO YOU MIGHT SEE A PERSON WHO IS
DISABLED WITH SOME KIND OF
CHRONIC ILLNESS OR SOME OTHER
NEEDS, NOT SEEN AS TEEN PLAYER
OR FAILING IN SOME WAYS SIMPLY
BECAUSE THEY ARE NOT ABLE TO
LIVE UP TO WHAT IS HONESTLY AN
UNATTAINABLE STANDARD FOR
EVERYBODY IN MEDICINE. SO WHAT
KIND OF THINGS DISABLED DOCTORS
AND (INAUDIBLE) EXPERIENCE ONCE
IN PRACTICE OR TRAINING
PROGRAMS. ONE OF THE BIGGEST
ISSUES WE SEE WHICH YOU HAVE
HEARD A LITTLE BIT SO FAR IS
BURN-OUT. SO GETTING INTO
PRACTICE BUT NOT BEING ABLE TO
CONTINUE BECAUSE OF EMOTIONAL
DISTRESS, BECAUSE PHYSICALLY NOT
ABLE TO DO IT BECAUSE YOU START
TO HAVE ALL KINDS OF SYMPTOMS
THAT ARE RELATED TO THE THIS
IDEA OF NOT BEING ABLE TO KEEP
GOING AND PHYSICALLY BURNING OUT
OR MENTALLY BURNING OUT AFTER
SOMETIME AND HAVING TO EITHER
TAKE TIME OFF OR LEAVE THE
PRACTICE OR CHANGE WHATEVER
GOING ON WITH YOUR PRACTICE AS A
RESULT. OTHER THINGS DISABLED
PHYSICIANS AND EXPERIENCE ARE
LIMITED OPPORTUNITIES
PARTICULARLY FOR MENTORSHIP
SPONSORSHIP PROMOTION, IF YOU
THINK ABOUT IT, IF YOU HAVE
FEWER OPENLY DISABLED PEOPLE
THAT YOU CAN WORK WITH YOU CAN
COLLABORATE WITH, OR WHO
UNDERSTAND WHAT YOU ARE GOING
THROUGH, TO BE ABLE TO PROVIDE
SUPPORT TO YOU, OF COURSE THAT
IS GOING TO AFFECT THE WAY YOU
ARE ABLE TO PRACTICE AND AFFECT
YOUR TRAINING AND YOUR CAREER
TRAJECTORY. MICRO AND MACRO
AGGRESSIONS RELATED TO
DISABILITY ABLEISM ARE OTHER
THINGS DISABLED DOCTORS
EXPERIENCE, THESE CAN BE COMING
FROM EITHER SOMEONE WHO IS ABOVE
THE KIND OF CHAIN OF COMMAND
THAN YOU, A BOSS, OR MAYBE
SECTION CHIEF, SOMETHING OF THAT
NATURE, IT CAN COME FROM YOUR
ATTENDING IF YOU ARE A DISABLED
TRAINEE. CAN ALSO COME FROM
PATIENTS, I WON'T GET INTO THIS
TALK BUT IT IS SOMETHING PEOPLE
DEAL WITH. ALL THESE LEAD TO
DECREASED JOB SATISFACTION, OF
COURSE ALL THAT CAN TART TO LEAD
TO START TO LEAD TO PEOPLE NOT
BEING ABLE TO OR WANTING TO
COMPLETE TRAINING OR NOT FEELING
SAFE IN THE PROGRAMS, MAYBE
SWITCHING TO A DIFFERENT
INSTITUTION OR MAYBE LIVING THE
FIELD ALL TOGETHER. WE KNOW FOR
EXAMPLE SOME DISABLED MELDCAL
STUDENTS CITED DISCRIMINATION
PREJUDICE FEELINGS OF ISOLATION
AND DIFFERENT CULTURAL
EXPECTATIONS NEGATIVELY IMPACT
OVERALL MEDICAL EXPERIENCE AND
THEN YOU HAVE TO TAKE A LOOK
ANOTHER THE FACT THAT THEY ARE
LIKELY NOT JUST DEALING WITH
ABLEISM BUT DEALING WITH
INTERSECTIONAL KINDS OF
DISCRIMINATION. SO EVERYTHING
YOU ARE SEEING HERE CAN CAN BE
COMPOUNDED BY THE FACT THAT OUR
PHYSICIANS IS OF COLOR MIGHT
EXPERIENCING RACIALIZED KIND OF
ABLEISM, OF COURSE GENDER
DIFFERENCES AND DISCRIMINATION
AND ALL THESE THINGS THAT MAKE
EVERYTHING SO, SO MUCH WORSE.
OTHER ISSUES WE SEE FOR DISABLED
PEOPLE IN MEDICINE, WE HAVE
NOTICE DISABILITY IS HEAVILY
STIGMATIZED. GOING BACK TO SOME
OF THOSE CULTURAL NORMS THAT WE
HAVE WITHIN THE HEALTHCARE
FIELD. THINGS THAT DOCTORS ARE
EXPECTED TO DO AND THINK AND BE
AND LOOK LIKE. AND KNOWING THAT,
MEANS THAT OF COURSE AGAIN
ANYBODY WHO DOESEN CONFORM TO
THAT PARTICULAR NORM HOE DOESN'T
CONFORM IS NOT OPERATING AT THE
LEVEL THAT PERCEPTION THEY ARE
NOT ACTING AT LEVEL THEY ARE
EXPECTED TO BE. AGAIN IF YOU
HAVE FEWER DISABLED DOCTORS
FEWER OPPORTUNITIES FOR DISABLED
TRAINEES FEWER OPPORTUNITIES FOR
COLLABORATION BETWEEN OTHER
KINDS OF OR DISABLED AND
NON-DISABLED PEERS, FOR FEWER
OPPORTUNITIES FOR CONNECTION
WITH PATIENTS, I THINK ONE OF
THE THINGS THAT WAS ALSO NICELY
HIGHLIGHTED IN THE PRECEDING
TALK WAS THAT DISABLED
CLINICIANS AND TRAINEES BRING A
VERY INTERESTING PERSPECTIVE TO
PATIENT CARE, WE KNOW THAT TO
PUT IT SIMPLY MARGINALIZED
DOCTORS ARE GOOD FOR
MARGINALIZED PATIENTS. DISABLED
DOCTORS GOOD FOR DISABLED
PATIENTS. WE CAN UNDERSTAND
PERSPECTIVES THE WAY
NON-DISABLED KIDS CAN'T AND
RELATE TO OUR DISABLED PATIENTS
ALSO IN A WAY THAT ARE
NON-STABLE PEERS CAN'T. THAT CAN
ALSO EFFECT BOTH CARE PEOPLE
RECEIVE AND DOCTOR PATIENT
RELATIONSHIP AND ALSO ULTIMATELY
AFFECT THE PATIENT HEALTHCARE
OUTCOMES. AS YOU THINK ABOUT
THIS YOU CAN START TO WONDER
WHAT DOES NOT HAVING DISABLED
TRAINEES AND DISABLED CLINICIANS
MEAN FOR DISABLED PATIENTS? WHAT
ARE WE TEACHING MEDICAL TRAINEES
ABOUT DISABILITY? FIRST NOT AS
MUCH A Z YOU THINK. THERE'S NO
TRAINING ON DISABILITY AND
PARTICULARLY DISABILITY APART
FROM PATHOLOGY. IN MEDICAL
SCHOOL, RESIDENCY OR FELLOWSHIP
EDUCATION AND CONTINUING MEDICAL
EDUCATION MOST OF WHAT WE LEARN
IS JUST FOCUSED ON TREATING SOME
KIND OF PATHOLOGY,OR LIMITED TO
UNDERSTANDING LIKE THE
BIOMECHANICAL MECHANISMS THAT
ARE UNDERPINNING DISEASE. WE
DON'T REALLY GET ANY KIND OF
INFORMATION ABOUT DISABILITIES
AN IDENTITY, DISABILITY RIGHTS,
DISABILITY HISTORY, EVEN
INTERACTING WITH DISABLED
PATIENTS OR TAKING CARE OF
DISABILITIED PATIENTS AND
TRAINEES, TAKING CARE OF
DISDISABLED PATIENTS AND HELPING
LIVE MT. COMMUNITY, PARTICULARLY
WHEN YOU ARE THINKING ABOUT
THINGS LIKE FOUR MEDICAL
STUDENTS MIGHT HAVE AN
OPPORTUNITY TO LEARN PHYSICAL
EXAMINATION SKILLS ON DISABLED
INDIVIDUALS WORKING WITH
STANDARDIZE PATIENTS TO
SOMETHING THAT IS COMMON IN
MEDICAL EDUCATION, TO BE ABLE TO
LEARN THOSE EXAMINATION
TECHNIQUES IS SOMETHING NOT SEEN
AND NOT DONE. THE FACT THAT YOU
ARE NOT GETTING DISABILITY
EDUCATION LEADS TO A LOT OF
PHYSICIANS HAVING ANTI-WAITED
IDEAS ABOUT DISABILITY AND CAN
ALSO LEAD TO FEELING VERY
UNCOMFORTABLE WITH DISABLED
PATIENTS. ONE OF THE THINGS WE
KNOW ABOUT IS THAT THERE HAVE
BEEN SEVERAL STUDIES THAT HAVE
COME OUT OVER THE YEARS WHICH
STATE THAT CLINICIANS ARE NOT
COMFORTABLE WITH TAKING CARE OF
DISABLED PATIENTS, THEY MIGHT
FEEL THAT THEY DON'T KNOW AS
MUCH AS THAT I SHALL ABOUT
DISABILITY ISSUES MIGHT NOT WANT
TO WELCOME DISABLED PEOPLE INTO
THEIR CLINICAL PRACTICE AND IF
YOU CAN THINK OF SOMEONE BEING
FACULTY EDUCATOR WHO IS
RESPONSIBLE FOR TRAINING THE
NEXT GENERATION, THOSE ARE THE
KINDS OF IDEAS NORMS AN VALUES
THEY GOING TO PASS ON TO THEIR
TRAINEES. THERE ARE THINGS WE
NEED TO KNOW ABOUT AND ON THIS
SLIDE YOU SEE A WORD CLOUD THAT
HAS VARIOUS EUPHEMISMS FOR
DISABILITY WITHIN THE WORD
CLOUD. THOSE ARE VARIOUS COLORS,
GREEN BLUE AN YELLOW AND SOME OF
THOSE EUPHEMISMS ARE DISABLED
PERSON SPECIAL NEEDS HANDICAPPED
DIFFERENTLY ABLED PHYSICALLY
CHALLENGED, THINGS OF THAT
NATURE. WITHIN THIS WORD CLOUD
ARE SOME TERMS I DON'T USE AND
SOME TERMS THAT ARE COMMONLY
USED IN MEDICINE. UNFORTUNATELY
THOSE LANGUAGES SOMETHING AS
PERVASIVE IN MEDICINE, OFTEN
TIMES YOU WILL HAVE PEOPLE AGAIN
NOT HAVE ANY PARTICULAR
EDUCATION ABOUT DISABILITY
INCLUSIVE COMMUNICATION, WHAT
HAVE YOU WHO ARE SERVING AS
EDUCATORS FOR THE NEXT
GENERATION OF TRAINEES BY MEANS
THESE TERMS HAVE PASSED DOWN,
DON'T NECESSARILY KNOW YOU DON'T
NEED TO USE THEM AND DON'T HAVE
ANY ALTERNATIVES TO WHAT THEY
CAN BE USING LANGUAGE THAT
CONTRIBUTES TO THE
STIGMATIZATION OF DISABILITY AND
DISABLED PEOPLE. SOME THINGS WE
KNOW AGAIN HIGHLIGHTED IN THE
PREVIOUS TALK, IS THERE ARE SOME
-- COMING UP, THERE'S MEDICAL
SCHOOLS THAT PARTNER WITH
DISABLED EDUCATORS AN
RESEARCHERS INCLUDING DISABLED
PEOPLE INTO DESIGN OF CURRICULA
FOR MEDICAL STUDENTS AND
RESIDENTS, WE KNOW THERE ARE
DISABILITIES FOCUSED CURRICULA
OR CENTERED CURRICULA COMING UP
FOR TRAINEES. OF COURSE THERE
ARE MORE OPPORTUNITIES FOR
CONTINUING MEDICAL EDUCATION,
RESIDENTS AND PEOPLE AND
PRACTICE ALREADY. I WAS JUST AT
AMERICAN ACADEMY OF NEUROLOGY
MEETING AND ONE THING I WAS
PLEASANTLY SURPRISED BY AND
HOPEFUL FOR WAS THE FACT THAT WE
HAVE SO MANY MORE TALKS
SPECIFICALLY DISABILITY FOCUSED
AT SOME OF OUR ACADEMIC MEDICAL
CONFERENCES. SO AGAIN, OTHER
OPPORTUNITIES FOR TRAINEE,
PEOPLE IN PRACTICE TO GET
DISABILITY EDUCATION. AND THEN
ALSO MENTORSHIP PROGRAMS
DEVELOPING FOR TRAINEES AND
FACULTY SO THAT WE CAN CONNECT
WITH OTHER DISABLED PEOPLE AND
AGAIN SEE THAT IT IS POSSIBLE TO
HAVE A CAREER ACADEMIC MEDICINE
OR HAVE A CAREER IN MEDICINE AND
BE ABLE TO SEE THAT YOU CAN
CONTINUE TO MAKE PROGRESS AND BE
SUCCESSFUL AND HELP YOUR
PATIENTS. OTHER THINGS, SOME
THINGS THAT SOME PHYSICIAN
EDUCATORS OTHER PEOPLE IN
MEDICINE CAN DO TO SUPPORT
TRAINEES AND COLLEAGUES IS TO
RECOGNIZE DISABILITY, NOTION OR
IMPORTANCE OF DISABILITIES AND
IDENTITY, ACKNOWLEDGING ABLEISM
NEGATIVELY INFLUENCES MEDICAL
EDUCATION AND HEALTH. SIMILAR TO
OF COURSE OWN BIASES THESE ARE
SOME OF THE THINGS WE ARE
WORKING ON AND SOME OF THOSE
TALKS I REPRESENT AT THE ACADEMY
LAST WEEK AND I MOW OTHERS ARE
WORKING ON ACROSS THE COUNTRY.
SOME OTHER STEPS PHYSICIANS AN
EDUCATORS INCORPORATE
ANTI-ABLEIST PRACTICE INTO
MEDICAL TRAINING. THERE ARE
OTHER KINDS OF PROGRAMS STARTING
TO WORK ON THINGS LIKE THAT. AND
ALSO DOING THESE KINDS OF NEEDS
ASSESSMENTS TO EXAMINE
INSTITUTIONAL POLICIES AND HAVE
ANOTHER TALK WE WERE GIVEN LAST
WEEK, ALSO ACADEMY TALK
SPECIFICALLY ABOUT HOW TO
ABLEIST MEDICAL LANGUAGE FROM
OUR PERSONAL LEXICONS SO THESE
CLINICIANS DON'T PERPETUATE
THOSE STEREOTYPES. IS MY LAST
SLIDE AND SHOWS CIRCLES ONE THAT
SAYS LGBTQ POSITIONS, ONE
LABELED UNDER-REPRESENTED
MINORITY PHYSICIAN AND ONE THAT
REPRESENTS PHYSICIANS WITH
DISABILITIES, SIDE NOTE I THINK
IT IS FUNNY BECAUSE PEOPLE DON'T
REALIZE YOU CAN BE ALL AT ONCE
BUT IN THE CENTER OF THE
CIRCLES, AGAIN SOME OF THE STEPS
WE CAN DO TO SUPPORT PHYSICIANS
AND TRAINEES FROM
UNDER-REPRESENTED GROUPS IN
MEDICINE, THOSE INCLUDE
MEDICATION, BIAS TRAINING
CULTURAL COMPETENCY AND
SENSITIVITY TRAINING DEBT
REDUCTION AND COMPENSATION
EQUITY AND ANOTHER TOPIC AND
INITIATIVES AND WORK FORCE
STUDIES. I WILL STOP SHARING.
THANK YOU.
>>WONDERFUL TALK, DIANA AND
GOOD SEGUE TO WHAT I'M TALKING
ABOUT THIS MORNING. WHICH IS
ORGANIZING AND ADVOCATING. I'M
GOING TO TALK A LITTLE BIT ABOUT
MY EXPERIENCE AT STANFORD. AS A
VISUAL DESCRIPTION I'M A BROWN
HAIRED BLUE EYED WHITE MAN, AND
I HAVE A BLUE SHIRT AND GRAY, I
THINK, YES, GRAY, SPORT COAT I
HAVE A HALF SMILE, IDENTIFIED AS
DISABLED I HAVE A C 3 C 4
INCOMPLETE SPINAL CORD INJURY.
SO I FINISHED MY TRAINING IN
RADIOLOGY IN 2009 AND JOINED THE
FACULTY AND WORKED ON A LOT OF
INITIATIVES RELATED TO EDUCATION
AND RESIDENCY TRAINING AND AFTER
I STOPPED DOING A IN 2016 AND 17
STARTED LOOKING AROUND AND SAW
THAT DIVERSITY INITIATIVES WERE
POPPING UP ALL OVER CAMPUS AND I
HAD ALWAYS BEEN INTERESTED IN
DIVERSITY AND SOCIAL JUSTICE.
AND I WAS REALLY EXCITED WHEN I
GOT THIS NOTIFICATION THAT MY
DEPARTMENT WAS LAUNCHING A
DIVERSITY INITIATIVE AND I SAID
WOW THIS IS GREAT LOOK THERE'S
SOMEBODY IN A WHEELCHAIR AN
SOMEBODY WITH A WALKER, IT IS
VERY INCLUSIVE OF THOSE WITH
DISABILITIES, BUT WHEN I LOOKED
AT THE MEMBERS OF THE COMMITTEE
I NOTED THAT THERE WASN'T
ANYBODY WITH A VISIBLE OR KNOWN
DISABILITY SO I COULDN'T BE
CERTAIN THAT DISABILITY WAS
BEING REMITTED AND FOLLOWING THE
NOTHING ABOUT US WITHOUT US
MANTRA I VOLUNTEERED TO JOIN.
THE MORE I LEARNED ABOUT
DIVERSITY THE MORE I REALIZE
THAT IT LOOKS MORE LIKE THIS
WITH GENDER AND RACE AND SEXUAL
ORIENTATION WHICH ARE VERY
IMPORTANT COMPONENTS OF
DIVERSITY BUT NOT MUCH
REPRESENTATION OF DISABILITY.
AND I BEGAN TO REALIZE THAT
DISABILITY WAS EXCLUDED FROM
DIVERSITY EFFORTS AND MULTIPLE
LEVELS, WE HAD A DIVERSITY
CABINET AT STANFORD FOR TEN
YEARS THAT HAD NO DISABILITY
REPRESENTATION AND WE ARE OFTEN
AN AFTER THOUGHT OR THE LAST
GROUP TO JOIN THESE TYPES OF
DIVERSITY ALLIANCES. I ALSO
VOLUNTEERED FOR A FACULTY SENATE
SUBCOMMITTEE ON DIVERSITY AND IT
WAS THERE I SHEEPISHLY SUGGESTED
THAT WE WORK ON DISABILITY
ISSUES, AS PART OF OUR PROJECT
FOR THE UPCOMING YEAR. OUT OF
THAT THE WORK CULMINATED IN
FORMATION OF SMADI. PREVIOUSLY
CALLED SMAC IN LATE 2018, TO
DIEIA THAT'S DISCUSSION ABOUT
EUPHEMISMS WHEN I NAMED THE
GROUP I DIDN'T KNOW MUCH ABOUT
DISABLED CULTURE, AND LANGUAGE
SO AFTER A FEW YEARS WE DECIDED
TO CHANGE OUR NAME FOR ALLIANCE
OF DISABILITY INCLUSION AND
EQUITY LEADING INTO THE TERM
DISABILITY AND SO DISABILITY
PRIDE. THESE ARE PICTURES OF
OUR LAUNCH EVENT WHEN WE BECAME
EMPLOYEE RESOURCE GROUP AT
STANFORD HOSPITAL AND WILL IS
SOME LEADERS ON THE STAGE MAKING
SPEECHES AND AUDIENCE MEMBERS
ARE SITTING AT ROUND TABLES WITH
TABLE CLOTHS AND OFF TO THE SIDE
THERE IS MY ASSISTANT WITH MY
CRUTCHES WAITING FOR MY TURN TO
TALK. I THINK THAT I BENEFITED
SOMEWHAT BECAUSE THE TIME WAS
RIGHT, SEPARATELY PEOPLE WERE
THINKING ABOUT HOW TO INCLUDE
DISABILITY AND DIVERSITY BUT
DIDN'T KNOW HOW TO START
DISABILITY WAS STIGMATIZED, THEY
WERE AFRAID OF SAYING THE WRONG
THING OR ASKING THE -- SAYING OR
ASKING THE RIGHT QUESTIONS, AND
EVEN WONDERING IF ASKING ABOUT
DISPARITIES WAS AGAINST THE LAW
-- DISABILITY WAS AGAINST THE
LAW. SO THERE WAS A GREAT DEAL
OF RELIEF WHEN I STARRED WORKING
ON THIS BECAUSE AS DISABLED
PERSON I WAS TASKED WITH IT AND
IT WAS TAKEN OFF THEIR PLATE.
SO THE FIRST THING I DID WHEN
STARTING SMATIE, THESE ARE WHAT
I THINK ARE BEST PRACTICES OR
THINGS THAT I LEARNED FROM MY
EFFORTS WAS TO LEARN ABOUT THE A
B Cs, SO JUST UNDERSTANDING
THE DISABILITY LANDSCAPE AT
STANFORD AND ACROSS THE NATION,
THE ACRONYMS THAT EXIST
EVERYWHERE LIKE THE OAE OFFICE
OF ACCESSIBLE EDUCATION OR THE
DAO DIVERSITY AND ACCESS OFFICE.
WHO WORKED IN THOSE OFFICES AND
WHAT THEIR ROLES WERE. HAD TO
UNDERSTAND THAT SO THAT I WASN'T
JUST DUPLICATING EFFORTS ONE OF
MY PET PEEVES TO FIND OUT
SOMEBODY ELSE IS WORKING ON SAME
THING I'M WORKING ON AND WE ARE
NOT COLLABORATING TOGETHER ON
IT. SO WE REALLY ALSO STRIVE TO
BE INCLUSIVE IN OUR ADVOCACY,
INCLUDING ALL TYPES OF
DISABILITY GROUPS REPRESENTING
THE DIVERSITY WITHIN DISABILITY
AND THEN AS WELL AS DRAWING FROM
ALLYSHIP SUPPORT. SO THIS
INTERSECTIONAL APPROACH NOT ONLY
ADVANCES ANTI-ABLEISM BUT IS
MUTUALLY BENEFICIAL AND BEING
PART OF DEI NETWORK OPENS UP
RESOURCES IN TERMS OF FINANCIAL
RESOURCES EXPERIENTIAL RESOURCES
AND OTHERS THAT ARE CRITICAL TO
GROWTH. IT IS IMPORTANT TO
DEVELOP VALUES AND VISION AN
MISSION STATEMENTS IN ORDER TO
FOCUS YOUR EFFORTS. THESE HAVE
BEEN CAREFULLY CRAFTED AND
REFINED OVER TIME, I SORT OF
MADE UP THE ORIGINALS AND THEN
REFINED THEM WITH MEMBERS OF MY
BOARD OF DIRECTORS. AND SO UNDER
THE VALUES WE BELIEVE IN A WORLD
WHERE DISABILITY IS CELEBRATED
AS INTEGRAL PART OF EPILOU UZITY
DIVERSITY AND EQUITY, WE BELIEVE
IN A WORLD THAT WE ARE NOT QUITE
THERE YET AND THE CELEBRATED
WORD TO EXPRESS DISABILITY IS
NOT A PROBLEM TO BE SOLVED BUT
SOMETHING TO BE SOUGHT AFTER AND
CELEBRATED AND INCLUDED AS A
VITAL PART OF DIVERSITY. THEN WE
ALSO ENDEAVOR IN OUR VISION
STATEMENT TO TRANSFORM THE
CULTURE OF STANFORD MEDICINE
FROM BEYOND ONE OF COMPLIANCE TO
PROVOCATIVE ANTI-ABLEISM WHERE
EVERYONE CAN THRIVE. AS DIANA
SAID THIS CULTURE CHANGE IS
ESPECIALLY IMPORTANT REDUCING
IMPLICIT AND EXPLICIT BIAS,
NAMING ABLEISM AS ENEMY AND
UNDERSTANDING IT AND HOW IT
MANIFESTS AND THEN AGAIN
FOCUSING ON EFFORTS MUTUALLY
BENEFICIAL. THERE IS EVEN
OUTSIDE DISABILITY COMMUNITY. IN
ROOTING OUR MISSION WITHIN
DIVERSITY EFFORTS INTEGRATING
ACROSS STANFORD WE ARE ABLE TO
APPROACH THIS WORK FROM SEVERAL
AREAS OF IMPACT. THESE ARE
RESEARCH ADVOCACY COMMUNITY
EDUCATION HEALTH EQUITY AND
MENTORSHIP SORRY, I HAVE DRY
MOUTH. SO THESE ARE VERY
IMPORTANT FOR ESTABLISHING
ACADEMIC CREDIBILITY FOR
DEVELOPING ROBUST PROGRAM THAT
CAN SUPPORT NOT ONLY DOCTORS AND
TRAINEES AND OTHER EMPLOYEES
WITH DISABILITY BUT PATIENTS
WITH DISABILITIES. AN EXAMPLE
OF EDUCATION IS OUR ANNUAL
CONFERENCE THAT JUST TOOK PLACE
ON SATURDAY, UNDER THE HEALTH
EQUITY MISSION. THERE WAS AN
AMBULATORY TRANSFORMATION TASK
FORCE THAT LAUNCH AD COUPLE OF
YEARS AGO TO IMPROVE ACCESS TO
HEALTH FOR THE COMMUNITY AND I
WANT TO MAKE SURE THEY WERE
FOCUSING ON DISABILITY WHICH
THEY HADN'T THOUGHT ABOUT. AND
MENTORSHIP WITH OUR MENTORSHIP
PROGRAM I WILL TALK ABOUT AFTER.
SO THESE ARE THE SIX MISSION
FUNCTIONS AND THEN WE ALSO
WANTED TO TO INTEGRATE ACROSS
THE INSTITUTIONAL ENTERPRISE.
STANFORD IS A BIG ACADEMIC
MEDICAL CENTER UNDER THE
UMBRELLA OF STANFORD UNIVERSITY,
UNDER THAT THERE IS SCHOOL OF
MEDICINE. WE HAVE STANFORD
HEALTHCARE OUR ADULT HOSPITAL,
STANFORD CHILDREN'S HEALTH
PEDIATRIC HOSPITAL, AND THOSE
ARE SEPARATE BUSINESS ENTITIES,
THEN THERE ARE SOME GROUPS THAT
SPAN BOTH HOSPITAL AND SCHOOL OF
MEDICINE. SO WE WANTED TO MAKE
SURE THAT DISABILITY WAS
REPRESENTED IN ALL OF THESE
SPHERESS. SO IN STANFORD
HEALTHCARE WE STARTED A PATIENT
FAMILY ADVISORY COUNCIL TO TIME
UP PATIENTS AND CAREGIVER --
TEAM UP PATIENTS AND CAREGIVERS
WITH IS A STAFF TO WORK ON
ACCESSIBILITY PROJECTS AT THE
HOSPITAL. WE WORKED WITH OUR
LIBRARY COLLEAGUES TO CREATE
INTERSECTIONAL DISCUSSION GROUPS
WITH OTHER EMPLOYEE RESOURCE
GROUPS TO BUILD ALLIANCES FOR
EXAMPLE, WE HAD ONE ON BEING
BLACK AND DISABLED, ANOTHER ONE
ON BEING QUEER AND DISABLED.
THESE EFFORTS AND ALLIANCES THAT
WE CREATED ARE UNIQUE AND HASN'T
BEEN AN ORGANIZATION AT STANFORD
THAT HAS PUT HOLD IN
RELATIONSHIPS MANY ALL THESE
DIFFERENT AREAS. THAT'S SORT OF
PROFILE HAS RESULTED IN US
HAVING A SEAT AT THE TABLE.
IMPORTANT DISCUSSIONS. ONE OTHER
THING THAT IS IMPORTANT IS TO
UNDERSTAND YOUR LANDSCAPE AND
HAVE DATA TO BACK UP YOUR
ASSERTIONS. WE HAVE THIS JUSTICE
EQUITY AN DISABILITY SURVEY IN
2020 AND FOUND OUT STANFORD
MEDICINE 26% OF STUDENTS
EMPLOYEES HAVE A DISABILITY.
THOUGH MOST DON'T IDENTIFY, ONLY
8% COMMUNITY IDENTIFIES HAVING A
DISABILITY. WE FOUND OUT THAT
MOST HAVE NO ACCOMMODATIONS IN
PLACE. AND IN THE QUALITATIVE
ANALYSIS BECAUSE THE COST IN
TERMS OF STIGMA AND CAREER HARM
WERE TOO HIGH AND PEOPLE DIDN'T
REALLY SEE THE BENEFITS WITHOUT
THE RISKS OUT-- OR HOW RISKS
OUTWEIGHED THE BENEFITS. WE
FOUND THERE WASN'T A STRONG
SENSE OF COMMUNITY, DISABILITY
COMMUNITY AT STANFORD AND THEN
WHEN WE LOOK AT THE CLIMATE WE
SAW THAT EXPERIENCE OF OUR
DISABLED STUDENTS AND COLLEAGUES
WAS LOWER THAN EVEN AMONG OTHER
MINORITIZE GROUPSES AND THERE
WAS A STRONG SENSE OF EXCLUSION
AND POOR TREATMENT TO BE FRANK.
THEN THESE SORTS OF SURVEYS AND
UNDERSTANDING THE LANDSCAPE LED
TO MORE RECENTLY DR. MEEKS CAME
TO DO A SITE VISIT TO ASSESS
MEDICAL SCHOOL LEARNING
ENVIRONMENT AND HOPEFULLY THAT
IS GOING TO RESULT IN SOME
CHANGES INCLUDING SOME NEWLY
CREATED LEADERSHIP POSITIONS TO
MAKE SURE DISABILITY TREATMENT
IS IMPROVED. SO YOU DON'T HAVE
TO REINVENT THE WHEEL, THERE'S A
LOT OF TOOLS OUT THERE, FOR
LEARNING THAT YOU CAN APPLY TO
YOUR OWN INSTITUTIONS LIKE AAMC
REPORT. AUTHORED BY MEEKS AND
JANE AND OTHERS, NIH SCIENTIFIC
WORK FORCE DIVERSITY TOOL KIT.
THERE ARE BOOKS SUCH AS EQUAL
ACCESS FOR STUDENTS WITH
DISABILITIES, AND DISABILITY AS
DIVERSITY, THERE IS A PLETHORA
OF AAMC WEBINARS, COALITION OF
DISABILITY ACCESS AND HEALTH
SCIENCE EDUCATION HAS A LOT OF
RESOURCES ALSO ONE HINGE THAT WE
RECENTLY LAUNCHED IS AN ONLINE
COURSE CALLED CREATIVE INCLUSIVE
LEARNING ENVIRONMENT TO
MEDICINE, A GUIDE TO
ACCOMMODATIONS FOR LEARNERS IT
IS DISABILITY, THESE ARE
ANIMATED INTERACTIVE MODULES
THAT ILLUSTRATE BEST PRACTICES
FOR INCLUSION. YOU CAN FIND THIS
ONLINE BY SEARCHING THIS TITLE
AND IT IS ON STANFORD CME
WEBSITE. ALSO LIKE TO HIGHLIGHT
THE DOCS WITH DISABILITIES
INITIATIVE AND RESOURCES THROUGH
THAT INCLUDING THE PODCAST THE
DISABILITY GRADUATE MEDICAL
EDUCATION GROUP, THERE IS DR.
MEEKS HAS A TON OF RESOURCES ON
THERE. LASTLY I WANT TO TALK
ABOUT DISABILITY IN MEDICINE
MUTUAL MENTORSHIP PROGRAM. WE
INVITE ANYONE TO JOIN THE
PROGRAM, MENTORSHIP PROGRAM TO
RECOGNIZE OUR INTERDEPENDENCE
AND THAT EVERYBODY HAS SOMETHING
TO OFFER AS MENTOR AND EVERYBODY
CAN BE MENTORED AND RECOGNIZING
THAT ONE'S EXPERIENCE WITH
DISABILITY DOESN'T CORRELATE
WITH ACADEMIC RANK. WE HAVE
VIRTUAL MONTHLY MEETINGS WITH
DIDACTIC LECTURES AND
INTERACTIVE SESSIONS AND BREAK
OUT ROOMS. WE HAVE NETWORKING
EVENTS BEFORE AND AFTER, WE HAVE
OPPORTUNITIES FOR ASYNCHRONOUS
MEN VERYSHIP ONLINE. THIS IS ALL
DISABLED HEALTHCARE WORKERS,
TRAINEES AND ALLIES, IT IS
TOTALLY FREE, YOU CAN FIND US AT
DISABILITYMENTORS.ORG OR EMAIL
AT DISABILITYMEDMENTORS.ORG.
WITH THAT I WILL CONCLUDE. STOP
MY SLIDE SHOW.
>>THANK YOU, I WILL INVITE ALL
MY PANELISTS TO.
COP BACK ON CAMERA. JUST TO
REMIND THE AUDIENCE, OUR PLAN
FROM OUT HERE IS WE HAVE A FEW
PREPARED DISCUSSION TOPICS AND
THEN THERE ARE LOTS OF AMAZING
QUESTIONS COMING IN THROUGH THE
Q&A. AND THROUGH SOME OTHER
CHANNELS AND WE WILL SEE HOW
MANY OF THEM WE CAN GET TO. I'M
GOING TO DO SOME QUICK ONES
FIRST WHICH IS THAT THERE HAVE
BEEN QUESTIONS ABOUT WHETHER
FOLKS ARE WILLING TO SHARE THEIR
SLIDES AND PROVIDE CITATIONS. I
AM GUESSING MOST OF YOU WOULD BE
WILLING TO DO THAT BUT WE WILL
DEFINITELY FOLLOW-UP WITH THOSE
OF YOU ASKING QUESTIONS AND
ATTENDING ABOUT THAT AFTER THE
MEETING. THE FIRST QUESTION I
WILL THROW UP MY PLEA THREE
PANELISTS IS SO Y'ALL PROVIDED A
LOT OF AMAZING DATA AND CONTEXT.
WOULD YOU BE WILLING TO SHARE
YOUR -- SHARE ANY NECK DOSE
WHETHER YOURS OR THOSE OF OTHERS
THAT HELP ILLUSTRATE THE POINTS
FROM YOUR TALKS ABOUT THE IMPACT
OF ABLEISM ON WORK FORCE?
>>THIS IS MY TALK SINCE MY TALK
WAS FIRST I WILL START. IF YOU
SHORT STORIES THAT ILLUSTRATE
THESE IDEAS, IN PRIMARILY MORE
RESEARCH BASE FOR THIS PART, FOR
EXAMPLE I KNOW I WORK IN
RESEARCH TO DO WITH LONG TERM
OUTCOMES AND PREMATURITY, IF YOU
LOOK AT RESEARCH LITERATURE ON
THAT GROUP KIDS INTO MILD OR NO
DISABILITY MODERATE BUT THE
THING YOU GET TO LAST CATEGORY
GROUPS SEVERE DISABILITY AN
DEATH AS ONE CATEGORY. I HAVE
COLLEAGUES WHO FIND THAT
INCREDIBLY OFFENSIVE. IS
IMPLICATION THAT JUST BECAUSE
THEY HAVE CP DEGREE THEY HAD
DIFFICULTY WALKING OR DON'T WALK
AT ALL, MIGHT BE BLIND OR DEAF
DISABILITY BUT RESEARCH IS
FRAMING THEM AS EQUIVALENT AND
THAT IS JUST ORIAL. THAT ONE --
HORRIBLE. ONE PLACE YOU CAN SEE
THIS. I KNOW PEOPLE INTERESTED
IN GOING INTO RESEARCH FOCUSING
ON CONDITION THAT THEY HAVE.
THEN DECIDED TO CHANGE RESEARCH
DIRECTIONS BECAUSE OF FEELING
UNCOMFORTABLE GOING TO TALKS AND
OTHERWISE IN SPACES WHERE PEOPLE
LIKE THEM TALK ABOUT NEGATIVE
PATHOLPATHOLOGIZING WAY THEY TUD
OFF AND MOVE TO ANOTHER FIELD SO
DEFINITELY SOMETHING IMPACTFUL
TO PEOPLE IN THIS SPACE.
>>I'M HAPPY TO SHARE AS WELL.
SPECIFICALLY THINKING ABOUT THE
WHOLE RECRUITMENT PROCESS FOR
OUR TRAINEES, AT THIS POINT I
HAVE BEEN INVOLVED IN
RECRUITMENT FOR RESIDENCY AND
FELLOWSHIP PROGRAMS, IN
RESIDENCY FELLOWSHIP MYSELF. AND
OFTEN TIMES PARTICULARLY ATHINK
ONE OF THE THINGS THAT PEPPAR
MENTIONED WAS SO MANY DISABLED
TRAINEES OR TRAINEES HAVE
PROBLEMS GETTING ACCOMMODATIONS
FOR SPECIFIC CONDITIONS OR TESTS
WHAT HAVE YOU. THERE HAVE BEEN
MANY TIMES IN THE ROOM AND
DISCUSSIONS ABOUT TRAINEE WHO
MIGHT BE OTHERWISE FANTASTIC,
MAYBE THEY NEEDED ACCOMMODATION
FOR CERTAIN TEST OR MAYBE THEY
HAVE A HISTORY OF HAVING FAILED
ONE OF THE STEPS OR ONE OF THE
STANDARDIZED TESTS. THE QUESTION
IS ALWAYS IS THIS PERSON GOING
TO BE A LIABILITY WHAT KIND OF
THINGS WE AS PROGRAM GOING TO BE
MISSING OUT ON IF WE END UP
TAKING THIS PERSON IN AND
ALREADY STARTING TO PROJECTED
ARE THEY GOING TO BE ABLE TO
PASS THE TEST BE ABLE TO DO
THESE THINGS RATHER THAN LOOKING
AT THE REST OF THE APPLICATION,
LOOK AT THE REST OF THE
APPLICANT SO THERE'S SO MUCH
FOCUS ON OH THIS IS A PERSON
THAT WILL BE DETRIMENTAL TO OUR
PROGRAM RATHER THAN THINKING
WHAT IS -- HOW OUR PROGRAM CAN
BENEFIT FROM HAVING THIS PERSON
AND PARTICULAR EXPERIENCES.
THINKING ABOUT AGAIN LIKE PIGGY
BACKING OFF SOMETHING PEPPAR
SAID, SOMETHING ABOUT NOT
WANTING TO BE IN A ROOM OR NOT
WANTING TO HEAR HOW PEOPLE SPEAK
ABOUT YOU SO I GUESS YOU HEARD
BEFORE I'M A CANCER SURVIVOR,
STROKE SURVIVOR AND I DID
TRAINING IN PEDIATRIC NEUROLOGY,
WE HAVE TO SPEND A YEAR ON THE
THE ADULT NEUROLOGY SITE. I
SPEND TIME WORKING IN THE STROKE
UNIVERSITY, BEING THE PERSON WHO
WAS FIRST RESPONDER TO A STROKE
CODE, AND THEN OF COURSE SITTING
IN STROKE REPORT WHICH IS WHERE
YOU ALL OF THE RESIDENTS AND
SEVERAL OF THE ATTENDINGS AND
STROKE ATTENDINGS AND CRITICAL
CARE IN PARTICULAR SIT AND TALK
ABOUT PATIENTS AND WHAT WE ARE
SUPPOSED TO LEARN. THERE ARE
MANY TIMES I AS THE TRAINEE,
WOULD BE SITTING IN AND
LISTENING TO PEOPLE TALK ABOUT A
PATIENT AND HOW THEY WERE
RESPONDING, TALK ABOUT THEIR
LESIONS, PARTICULARLY TALK ABOUT
WHAT WAS EXPECTED FOR THEIR
LIFE. AND IT WOULD BE HARD TO
HEAR. BECAUSE IT WAS JUST LIKE
OH THIS PERSON'S LIFE IS OVER,
THEY ARE NOT ABLE TO HAVE A JOB,
NOT GOING TO BE ABLE TO DO X Y
AND Z, SOMETIMES IT WOULD BE
PEOPLE HAVE SIMILAR PATTERNS OF
DISTRIBUTION OF A STROKE TO MY
OWN SO THAT WOULD CERTAINLY WAS
EMOTIONALLY DISTRESSING. I THINK
THAT I'M LUCKY AND I DID HAVE
SOME PEOPLE WITHIN MY PROGRAM
THAT I COULD TALK TO THAT
PROVIDED MENTORSHIP AND
ADDITIONAL GUIDANCE AND SUPPORT.
I SHUTTER TO THINK HOW MANY
TIMES DISABLED PEOPLE ARE IN THE
ROOM LISTENING AND HEARING THESE
CONVERSATIONS. AND UNFORTUNATELY
INSTANTLY INCREDIBLY AWARE OF
THE ABLEISM THAT SURROUNDS THEM
>>MY EXPERIENCE AT STANFORD
WHEN I FROM THE TIME I FIRST
STARTED THERE, WAS POSITIVE ONE.
THEY REALLY DIDN'T KNOW EXACTLY
HOW TO ACCOMMODATE ME AND I
ENDED UP FIGURING OUT A LOT OF
MY OWN ACCOMMODATIONS WHICH I
THINK IS OFTEN THE CASE. I
CONTINUE TO SELF-ACCOMMODATE, I
HAVE A VOLUNTEER PROGRAM WHERE
THESE PREVENT STUDENTS
GRACIOUSLY VOLUNTEER COCOME AND
HELP ME AS PERSONAL ASSISTANT
THROUGHOUT THE DAY. IT IS A
MUTUALLY BENEFICIAL RELATIONSHIP
AND CREATES A WIN WIN WHEREAS I
HAVE THE HELP THAT I NEED TO BE
MORE EFFICIENT AT MY JOB AND DO
THE WORKLOAD EQUIVALENT TO MY
PEERS AND THEY GET MENTORSHIP
AND CLINICAL EXPERIENCE THAT
HELPS THEM ON THEIR MEDICAL
SCHOOL APPLICATIONS. BUT AGAIN
THAT IS SOMETHING I DO ON MY
OWN. FACILITATED BY THE HOSPITAL
BUT TRY TO MINIMIZE AMOUNT OF
WORK THEY HAVE TO DO. THAT IS
SORT OF A COMMON THEME, ALWAYS
BEING CAREFUL NOT TO ASK FOR TOO
MUCH. I THIS I THAT ONCE I
STARTED A SMATIE I HEARD MORE
ANECDOTES ABOUT DISABILITY
TREATMENT AT STANFORD AND ACROSS
THE COUNTRY. I THINK THE IMPACT
OF A IS WE ENDS UP LOSING GOODS
PEOPLE, PEOPLE ARE PUSHED TO THE
BRINK. AND ARE DEMORALIZED
BECAUSE OF THEIR EXPERIENCES. SO
ONE OF MY FRIENDS, SHE HAS A
VISUAL DISABILITY AND HAS BEEN
TRYING TO GET ACCOMMODATED FOR
YEARS TO GET THE ELECTRONIC
MEDICAL RECORDS TO WORK WITH
THIS SCREEN MAGNIFICATION
SOFTWARE AND THE RESULT IS THAT
SHE CAN'T REALLY CHART AT WORK
SO SHE HAS TO CHART AT HOME LIKE
SHE IS UP UNTIL MIDNIGHT AT
NIGHT, IT'S BEEN RECOMMENDED
THAT SHE RETIRE. THAT MAYBE IT
IS JUST NOT WORTH IT AND SHE HAS
BEEN REALLY TOUGH AND DOESN'T
WANT TO QUIT. SHE LOVES HER
JOB. SHE LOVES BEING IN A
POSITION TO HELP OTHER PEOPLE
WITH DISABILITY AND USING THAT
EXPERTISE BUT IT IS DEMORALIZING
TO KEEP GOING AROUND IN CIRCLES
AND SO MANY OF OUR -- MY LIGHT
JUST TURNED OFF. SO MANY OF OUR
HR SYSTEMS, JUST NOT OPTIMIZE
FOR EFFICIENCY AND PEOPLE END UP
RUNNING AROUND MANY CIRCLES AND
HAVING ALL SORTS OF DELAYS. THE
RESULT IS THAT PEOPLE QUIT AND
WE LOSE A LOT OF GOOD FOLKS.
>>THANK YOU ALL. I WANT TO MOVE
TO OUR NEXT TOPIC WHICH IS ONE
THAT HAS COME UP OVER BOTH DAYS
OF THIS MEETING, IN SEVERAL OF
YOUR TALKS AND THAT IS ABOUT
DISCLOSURE. SO WE TALK ABOUT
MAKING PROGRESS RECRUITING AN
RETAINING DISABLED PERSONS IN
SCIENTIFIC AND MELDCAL WORK
FORCE UNLESS GOOD BASELINE DATA
BUT PEOPLE ARE RELUCTANT TO
DISCLOSE. WE RECOGNIZE IT IS A
DEEPLY PERSONAL COMPLICATED
ISSUE. IF YOU ARE WILLING WE
LOVE THREE OF YOU TO SHARE YOUR
THOUGHTS ABOUT DISCLOSURE OR
NON-DISCLOSURE.
>>I SPECIFICALLY DISCLOSED I
WANTED TO TAKE THE TIME TO TALK
ABOUT HOW DISCLOSE AND WHY IN
REGARDS TO THIS QUESTION. I'M
GENERALLY OPEN ABOUT HAVING BEEN
BORN THREE MONTHS EARLY SIMILAR
TO KIDS IN MY RESEARCH STUDIES.
I WILL DEPEN FEND MY Ph.D.
NEXT MONTH AND OPEN MY TALKS
WITH PREMATURITY I PUT MY OWN
BABY PICTURE ON THE SLIDES. I
THINK REALLY THIS IS BENEFITED
ME, MY OWN HISTORY A LOT IN MY
CAREECAREER. WHY WHICHENT TO THE
FIELD TO BEGIN WITH, PROBABLY
DON'T MEET SIX-YEAR-OLD WHOSE
WILL TELL YOU I WANT TO BE A
NEONANEONATOLOGIST, PEOPLE/PUSHE
IN THAT AREA FOR A LONG TIME.
PART OF WHY I WAS SO OPEN ABOUT
THIS, BEFORE I CAME TO IDENTIFY
AS DISABLED IS BECAUSE PEOPLE
PERCEIVED SOMETHING LIKE THAT,
AS BEING IN THE PAST. I MEAN
BOTH WHEN I TALK ABOUT IT AND
ALSO GETTING TO LARGE COMMUNITY
AND STARTING TO BECOME
RECOGNIZED THAT THAT IS NOT SO
TRUE. IN FACT I REMEMBER ONCE
MANY YEARS AGO SHADOWING WITH
PEDIATRIC RESIDENT AND SHE
WANTED TO GO TO NEONATOLOGY, I
TOLD HER MY STORY AND SHE HAULED
ME TO SHOW ONE OF HER COLLEAGUES
AND SAID SEE THEY DON'T ALL GROW
UP DISABLED. AND I DIDN'T
IDENTIFY AS DISABLED AT THE TIME
BUT UNDERSCORES THE IDEA THAT'S
SPECIALLY SOMETHING -- PEOPLE
THINK OF IT THAT SOMETHING HAS
POTENTIAL TO LEAD TO DISABILITY
AND OWNS EVERYTHING OR DOESN DO.
RESEARCH IS SHOWING MY RESEARCH
AND OTHERS IN THE FIELD THIS
AFFECTS PEOPLE LIFE LONG EVEN IF
YOU LIKE ME AS MOM SAYS KICKED
OUT OF PAL CLINIC EARLY FOR
DOING TOO WELL. SO COMING TO SEE
THAT, YOU CAN BE AS YOU MIGHT
SAY A SUCCESS STORY AND DISABLED
AT THE SAME TIME. SO IN
PROFESSIONAL SPACES I GO BY THE
BLANKET DISABLED BECAUSE AS
TRAINEE I DON'T WANT TO OPEN
MYSELF UP TO THE DISCRIMINATION
AND OTHER QUESTIONS AND ISSUES
THAT WILL COME FROM MORE
SPECIFIC ABOUT EXACTLY WHAT IS
DIAGNOSED SINCE MY EARLY DAYS
AND HOW THAT EFFECT AS THINGS
UNLESS SOMEONE HAS REASON TO
KNOW BUT ALSO WANTING TO ADVANCE
CAUGHT AND TRYING TO KEEP THE
FOCUS MORE ON PEOPLE I'M TALKING
AND THE WORK THAT I DO MORE SO
THAN SPECIFICS OF MY STORY
IMPACTED. THAT IS MY LITTLE
THING TO SAY ABOUT DISCLOSURE.
>>SO I AT THIS POINT I'M PRETTY
-- I DON'T WANT TO SAY CHOOSEY
HOW I DISCLOSE BUT AT THE SAME
TIME I FEEL LIKE I'M FAIRLY OPEN
ABOUT MY OWN PERSONAL HISTORY.
MY VIEWS ABOUT DISCLOSURE
COMPLICATED AS EVERYBODY'S ARE
BY THE FACT THAT WHEN I FIRST
HAD MY ILLNESS I DIDN'T FEEL
LIKE I HAD A CHOICE TO DISCLOSE.
I WAS IN RESIDENCY WHEN I
FINALLY ACCURATELY GOT A
DIAGNOSIS AN HAD TO START HAVING
SURGERIES AN AS EVERYBODY WHO
HAS BEEN THROUGH MEDICAL
TRAINING UNDERSTANDS, RESIDENCY
SCHEDULES ARE SET A YEAR IN
ADVANCE. YOU DON'T HAVE OTHER
FACTORS BUILT IN, THERE ISN'T
PUSH IN TIME, I CAN'T JUST TAKE
TIME OFF BY ME BEING OUT TO
RECOVER FOR SURGERY THAT MEANT
OTHER RESIDENTS WERE GOING TO BE
TO HAVE TO BE PUT IN PLACE WHERE
I WAS SUPPOSED TO BE IN SCHEDULE
SO I WASN'T I COMPLETELY HIDE OR
NOT TELL ANYBODY WHAT WAS GOING
ON, I HAD TO TELL PEOPLE I HAD
TO BE AWAY AN HAD TO HAVE A GOOD
REASON AND USUALLY THE ONLY
REASONS WERE YOU ARE SICK, YOU
ARE PREGNANT, OR SOMEONE DIED.
SO I KIND OF TOLD FIRST MY
PROGRAM DIRECTORS AND MY CHIEF
RESIDENCES WHAT WAS GOING ON,
AND BEING A SMALL PROGRAM,
DESPITE THE FACT THAT PEOPLE ARE
SUPPOSED TO I GUESS KEEP THINGS
CONFIDENTIAL, THAT IS PART OF
OUR TRAINING TOO, THAT IS NOT
HOW IT WORKS IN RESIDENCY EITHER
EVERYBODY KNOW'S EVERYBODY'S
BUSINESS QUICKLY. SO AT FIRST IT
WAS ABOUT JUST LOGISTICALLY
TRYING TO MAKE SURE THAT
EVERYBODY KNEW WHAT WAS GOING ON
SO THAT I COULD GET MY SHIFT
COVERED. THERE WAS ALSO WHEN I
WAS SICK I GOT MY TREATMENT AT
THE ONE OF THE HOSPITALS WHERE
WE WORKED. SO IT WAS SEEN FOR ME
I GUESS YOU COULD SAY TO BE ABLE
TO GET MY CARE THERE. AT THE
SAME TIME BECAUSE I WAS
HOSPITALIZED IN THE HOSPITAL I
WORKED THAT MEANT THAT MY
COLLEAGUES ATTENDINGS, WHOEVER,
COULD COME BY AND SEE ME ON DAYS
WHEN I WAS HOSPITALIZED.
EVERYBODY KNEW WHERE I WAS. AND
AGAIN I THINK THAT SOMETIMES WE
IN HEALTHCARE DON'T DO A GOOD
JOB UNDERSTANDING WHERE BARRIER
-- WHERE BOUNDARIES LIE. AND
WHERE THEY SHOULD LIE. BETWEEN
COLLEAGUES, BETWEEN YOUR
PATIENTS, WHAT HAVE YOU. SO
ALREADY DEFINITELY CROSS
BOUNDARIES, PEOPLE WHO CAME TO
SEE ME WHEN THEY SHOULDN'T.
PEOPLE WHO LEARNED ABOUT WHAT IS
GOING ON WITH ME, AGAIN WHEN
THEY SHOULDN'T AND WHO KNEW MUCH
MORE ABOUT ME AND MY HEALTHCARE
CONDITION THAN I FELT
COMFORTABLE WITH AT THE TIME AND
DIDN'T UNDERSTAND HOW TO
ARTICULATE THOSE FEELINGS. AT
FIRST IT FELT LIKE EVERYBODY
KNEW WHAT WAS GOING ON WITH ME
AND MY BODY EXCEPT FOR ME
SOMETIMES PARTICULARLY WHEN I
WAS STILL FRESHLY HAD A STROKE
INTUBATED SEDATED AND IN THE ICU
PEOPLE MYWHAT WAS GOING ON WHEN
I LITERALLY WAS STILL IN
TWILIGHT. AFTER I STARTED COMING
BACK TO WORK AND STARTED REALLY
TRYING TO GET MY FEET BACK UNDER
ME AND FEW BURR WHAT I WAS GOING
TO DO WITH MYSELF AND MY CAREER,
AGAIN, A LOT OF PEOPLE KNEW WHAT
WAS GOING ON WITH ME BEFORE I
HAD THE CHANCE TO DISCLOSE BUT
WHEN IT CAME TIME TO MEET
ACCOMMODATIONS, SUDDENLY PEOPLE
DIDN'T UNDERSTAND WHY WE NEED
ACCOMMODATION, THOUGH THEY HAD
LITERALLY SEEN ME WHEN I WAS IN
ICU OR LOOK AT MY SKINS WHEN
THEY SHOULDN'T HAVE OR TALKED TO
MY FAMILY, MAYBE WHEN I CROSSED
THE BOUNDARY THEY SHOULDN'T
HAVE. SO AT FIRST I AGAIN WAS
PROTECTIVE, OF MYSELF AND
INFORMATION AND DISABILITY. BUT
I KIND OF GOT TO THE POINT WHERE
I WAS KIND OF LIKE EVERYBODY
KNOWS I HAVE THINGS THAT I NEED
AND IF I DON'T SAY THAT I NEED
THESE KIND OF ACCOMMODATIONS
NOBODY IS GOING TO FIGHT FOR ME
SO I GOT TO BE THE ONE TO DO SO
SO THAT POINT I STARTED GETTING
MUCH MORE PURPOSEFUL TALKING
ABOUT ACCOMMODATION NEEDS,
ACCESSIBILITY NEEDS AND
ULTIMATELY TALKING DISABILITY,
IT WASN'T REALLY UNTIL I STARTED
TO IDENTIFY AS A PERSON WHO IS
DISABLED UNTIL I STARTED
SPENDING MORE TIME IN DISABILITY
SPACES SO TRAINEE EDUCATION AND
RELATED DISABILITY TRAINEE, BUT
THAT WAS THE FIRST TIME BEING IN
THAT SPACE WITH OTHER DISABLED
PEOPLE WHO FEEL SELF-ADVOCATES
WORKING IN THEIR RESPECTIVE
FIELDS WHO COULD TALK ABOUT
DISABILITY AS IF IT WASN'T A BAD
WORD I PERSONALLY STARTED TO
FEEL MORE COMFORTABLE TALKING
ABOUT MYSELF BEING DISABLED.
AND NOW AGAIN, ON THE ONE HAND I
DON'T TELL EVERYBODY ALL THE
TIME, BUT I FEEL MORE
COMFORTABLE TELLING MANY I
COLLEAGUES, TRAINEES, ALL MY
TRAINEES AND COLLEAGUES AT THIS
POINT KNOW A LITTLE BIT ABOUT MY
HISTORY AND I TALK ABOUT TO
NORMALIZE IT PARTLY AND TO
PARTLY AGAIN HELP THEM
UNDERSTAND WHERE BARRIERS ARE
AND THE PERSONAL ASPECTS AROUND
DISCLOSURE. I ALSO SOMETIMES
DISPOSED OF PATIENTS AS --
DISCLOSED TO PATIENTS AS WELL,
THAT IS ALSO PEOPLE DEBATE
WHETHER YOU SHOULD DO THAT AS
CLINIC. I DON'T DO IT WITH EVERY
PATIENT BUT TIMES I HAVE I FEEL
LIKE IT HAS ONLY STRENGTHENED
OUR RELATIONSHIP SO AGAIN,
PATIENTS CAN SEE HEY, YOU CAN
ABSOLUTELY BE DISABLED AND
HEALTHY, YES DISABLED AND HAVE
THE CAREER THAT YOU WANT, YES
YOU CAN BE DISABLED AND EXIST AS
A PERSON. SO THOSE ARE MY
THOUGHTS ABOTHOUGHTS ABOUT IT.
>>DISCLOSURE WASN'T EVER REALLY
A QUESTION FOR ME. I THINK THAT
WELL, NUMBER ONE WHEN YOU SEE ME
I'M QUITE VISIBLY DISABLED
WALKING WITH CRUTCHES OR ON MY
SEGUE. BUT WHEN I DECIDED TO
SWITCH RESIDENCIES I HAD TO
WRITE A PERSONAL STATEMENT OF
COURSE AND I INCLUDED IN THERE
MY OWN PERSONAL STORY WITH
SPINAL CORD INJURY AN WHY I WAS
SWITCHING FIELDS. I USED MY
STORY IN A SENSE TO ILLUSTRATE
MY STRENGTH AND MY RESILIENCE. I
DON'T REALLY PARTICULARLY LIKE
THESE OVERCOMING NARRATIVES OR
INSPIRATIONAL NARRATIVES BUT I
THINK THAT WITH THOUGHT ONE CAN
SHARE ONE STORY AND SHOW IT HOW
DISABILITY HAS ACTUALLY -- IS
ACTUALLY A STRENGTH AND HOW IT
GIVES INSIGHTS AND REALLY INSIDE
VIEW OF HEALTHCARE FROM THE
INSIDE. THAT IS INSTRUMENTAL
IMPROVING THE HEALTHCARE OF
PATIENTS WITH DISABILITIES. I
USED TO OVERSHARE IN THE
BEGINNING. I DIDN'T REALLY KNOW
WHERE ON THE DISCLOSURE SPECTRUM
I SHOULD LAND. SO I THINK THAT I
WAS DEFINITELY OVERSHARING, A
FEW TIMES PROGRAM DIRECTOR WAS
LIKE YOU DON'T HAVE TO TELL ME
ALL OF THIS STUFF. AND SO I SORT
OF LEARNED OVER TIME I DON'T
TALK ABOUT MY PERSONAL
EXPERIENCE THAT MUCH. WITH MY
COLLEAGUES. I DO IN LECTURES
SOMETIMES I USE PHOTOS OF
MYSELF. AND MY PATH TO
ILLUSTRATE WHAT I HAVE BEEN
THROUGH. I DO A LECTURE, GIVE A
LECTURE ONCE A YEAR TO THE
MEDICAL STUDENTS WHO ARE
STARTING THIRD YEAR PHYSICIAN
AND PATIENT AND I USE ANECDOTES
FROM MY HOSPITALIZATIONS TO
ILLUSTRATE POINTS ABOUT WHAT
PEOPLE HAVE DONE THAT WAS
SUCCESSFUL OR INTERACTIONS THAT
WERE MEANINGFUL OR HELPFUL. AND
ALSO ILLUSTRATE SOME THINGS THAT
HAPPEN TO ME THAT WERE NOT SO
GREAT. I USE MY NARRATIVE, I
THINK, AS A TOOL. I USE IT
DEPENDING ON THE SITUATION IN A
WAY THAT I THINK WILL BENEFIT ME
OR BENEFIT OTHERS. THERE IS A
TERM CALLED POLITICAL
DISCLOSURE, I LEARNED FROM
(INAUDIBLE) JANE PEOPLE DISCLOSE
NOT JUST TO UNLOCK THEIR OWN
ACCOMMODATIONS BUT TO LIKE DIANA
AND PEPPAR WERE SAYING DECREASE
STIGMA AROUND DISABILITY O
NORMALIZE DISABILITY TO
ENCOURAGE OTHERS TO DISCLOSE. SO
I WOULD SAY THAT ALSO SOME
PEOPLE MAY NOT EVEN REALIZE THEY
ARE DISCLOSING OR THAT SOMEONE
IS DISCLOSING TO THEM. I THIS IS
IT IS IMPORTANT TO EDUCATE
PEOPLE ON WHAT CONSTITUTES A
DISABILITY. IT DOESN'T HAVE TO
BE IN A WHEELCHAIR OR BLIND OR
DEAF, THAT THERE IS A PLETHORA
OF DIVERSITY WITHIN DISABILITY
AND TO TELL PEOPLE TO ENCOURAGE
PEOPLE IF THEY ARE HAVING
IMPAIRMENT OR CONDITION THAT
SOME WAY LIMITS THEIR
ACTIVITIES, THAT THAT COUNTS AS
A DISABILITY. AND SAYING THAT
WORD OR UNDERSTANDING THAT WORDS
IF YOU ARE A UP SUPERVISOR
UNLOCKS KEY TO ACCOMMODATIONS AN
LETS EVERYBODY KNOW THAT THIS IS
A PROTECTED ZONE BUT THE LAW IS
PROTECTING THIS INTERACTION. AND
THE PERSON HAS A RIGHT. IT PUTS
EVERYBODY ON ALERT AND ATTENTION
H. THEY HAVE AN OBLIGATION TO
HELP THAT PERSON ACCORDING TO
THE LAW. THE LAST SLIDE I HAVE
ABOUT DISCLOSURE, IT IS
IMPORTANT ABOUT THE SYSTEMS WE
HAVE IN PLACE ENCOURAGE
DISCLOSURE, THAT THERE IS A
SYSTEM WHERE BRING BIA PERSON
DISCLOSES TO AN APPROPRIATE
PERSON, NOT NECESSARILY A DIRECT
SUPERVISOR OR PROGRAM DIRECTOR,
OR THEY ARE NOT FORCED TO MAKE
REPEATED DISCLOSURES TO MULTIPLE
SUPERVISORS. ALLEGATION TO MAKE
HOUR THE PROCESS ISN'T ONEROUS
AND THAT AFTER ACCOMMODATIONS
ARE PUT IN PLACE, THAT THERE IS
FOLLOW-UP. AND THAT IS A
CONSTANT ITERATIVE INTERACTIVE
PROCESS.
>>THANK YOU ALL THREE OF YOU.
SO THE NEXT QUESTION IS ONE WE
PLANNED BUT ONE SOME OF YOU
TOUCHED ON ALREADY SO WE CAN
MAKE RELATIVELY BRIEF AND MOVE
TO AUDIENCE QUESTIONS. WHAT I
HAVE IN MY NOTES IS WE TALKED
ABOUT HOW ONE OF THE REASONS
PEOPLE ARE RELUCTANT TO DISCLOSE
IS BECAUSE OF THEIR EXPERIENCES
FOLLOWING DISCLOSURE. WHETHER
THAT IS DISCRIMINATION, STIGMA,
WHETHER THAT IS ADMINISTRATIVE
OR PROCEDURAL BARRIERS. ANY
ADDITIONAL THOUGHTS HOW WE
IMPROVE PEOPLE'S EXPERIENCES
FOLLOWING DISCLOSURE?
>>BRIEFLY I WOULD SAY ASK WHAT
WE WANT TO GET OUT OF THIS,
DISCLOSURE OR TRYING TO EDUCATE
THE OTHER PERSON OR
ACCOMMODATIONS AN RECOGNIZE
DISABILITY SOMEONE HAD FOR A
LONG TIME, THE PERSON HAS A GOOD
IDEA WHAT THEY NEED AND THEY
HAVE BEEN ABLE TO GET THIS FOR
OUR 60 DAY IN THAT YOU ARE SPACE
SO DON'T DISCOUNT SOMEONE'S --
BECAUSE NOW YOU KNOW THEY ALSO
HAD A DISABILITY ALONG THE WAY.
>>I HAVE TO SAY ONE THING WE
SHALL DO IS ANTICIPATE THAT
DISCLOSURE MIGHT HAPPEN. AND
RECOGNIZE DISABLED PEOPLE ARE
ALREADY HERE IN MEDICINE.
SOMETHING THAT SAFER FOR PEOPLE
TO DISCLOSE. RATHER THAN THE
WORK ON THE BACK END.
>>PUTTING SYSTEMS IN PLACE
WHERE TAKES THE ONUS OFF
DISABLED PERSON, LIKE I SAID
EARLIER TO DISCLOSE REPEATEDLY
BUT OFFICES OF ACCESSIBLE
EDUCATION SHOULD HAVE STAFF TO
FACILITATE THIS SORT OF
COMMUNICATION TO ENSURE THE
RIGHT PEOPLE ONLY PROPER PEOPLE
ARE AWARE OF THE ACCOMMODATIONS
THAT ARE NEEDED. AND THAT DON'T
OVERSHARE THE WHY THEY NEED
ACCOMMODATIONS. THAT TO EDUCATE
PEOPLE THAT IT IS NOT
APPROPRIATE TO ASK PERSONAL
QUESTIONS ABOUT WHAT IS
DISABILITY OR THAT WHEN YOU HAVE
A DISABLED STUDENT OR RESIDENT
YOU APPROACH THEM AS A PATIENT,
ESPECIALLY IF THEY HAVE UNKNOWN
DIAGNOSIS AND PROBING AND
PRODDING AND TRYING TO FIGURE
OUT QUOTE UNQUOTE WHAT IS WRONG
WITH THEM. BUT ACCORDING TO THE
LAW, THIS HAS TO BE AN
INTERACTIVE PROCESS. IT IS NOT
JUST A ONE AND DONE. YOU DON'T
DISCLOSE GET ACCOMMODATIONS AND
IMPLEMENT THEM BUT YET YOU ARE
OBLIGATED TO FOLLOW-UP AND TO
MAKE SURE THAT THE
ACCOMMODATIONS ARE EFFECTIVE AND
IF CHANGES NEED TO BE MADE TO
MAKE THEM. IT IS NOT ENOUGH TO
JUST HAND A STUDENT A LETTER AND
SEND THEM ON THEIR WAY.
>>I AM GOING TO MOVE TO THE
QUESTIONS IN THE Q&A. I WANT TO
ACKNOWLEDGE OFF BAT THERE ARE
AMAZING QUESTIONS HERE, WE ARE
NOT GOING TO GET TO ALL OF THEM.
I THINK WHAT WE ARE GOING TO DO
IS GET TO AS MANY AS WE CAN AND
WE WILL CIRCULATE THE QUESTIONS
TO OUR PANELISTS AN TO THE
PARTICIPANTS AFTER THE MEETING
AND GIVE PEOPLE THE OPPORTUNITY
TO RESPOND IN MEETING A Z WELL
AND WE WILL TRY TO POST THAT
SOMEWHERE. I'M GOING TO START
GOING THROUGH THESE. ONE
ATTENDEE ASKS ARE WILL RESOURCES
BESIDES A LAWYER, FOR TRAIN
TRAINEES OR RESIDENTS WITH
DISABILITY WHO ARGUING
ACCOMMODATIONS ARE UNREASONABLE
WITHOUT HAVING TO FURTHER ARGUE
OR CONFIRM THAT CONCLUSION?
>>IT CAN BE HELPFUL TO REACH
OUT TO THE DISABILITY COMMUNITY.
IF YOU CAN -- I HAVE HEARD FROM
SOME PEOPLE THAT SHARING
INFORMATION ABOUT ANOTHER PERSON
WITH A SIMILAR DISABILITY THAT'S
BEEN SUCCESSFULLY ACCOMMODATED
CAN BE POWERFUL. I KNOW PEOPLE
HAVE USED MY SITUATION AS
ANECDOTE TO SHOW THAT SOMEBODY
WITH PARALYSIS CAN DO A
RESIDENCY IN RADIOLOGY. FOR
EXAMPLE. SO THE PROBLEM IS THAT
PEOPLE DON'T KNOW A LOT OF OTHER
DISABLED PE PEOPLE SOMETIMES AND
FEEL ALONE, THAT'S WHERE SOCIETY
FOR PHYSICIANS WITH DISABILITIES
COMES IN, DR. KIM HAS A THOUSAND
PEOPLE ON LIST SERVE WITH ALL
SORTS OF DISABILITIES WHO ARE
WILLING TO ANSWER QUESTIONS AND
PLUG FOR OUR IT IS ABILITY
MENTORSHIP -- DISABILITY
MENTORSHIP PROGRAM, PEOPLE CAN
SEEK OUT OTHERS WITH SIMILAR
DISABILITIES TO STRATEGIZE BEST
WAYS TO GET OUR NEEDS MET.
>>MOVE TO THE NEXT QUESTION.
AGAIN, THIS SOMETHING THAT I
THINK Y'ALL TOUCHED ON BUT AN
INTERESTING FRAMING. CAN THE
SPEAKERS ADDRESS HOW THE ISSUE
OF DISABILITY -- ADDRESS THE
ISSUE OF DISABILITY TOKENISM IN
DEIA EFFORTS? HOW CAN WE
ENCOURAGE RESEARCHERS AND
CLINICIANS WITH INVISIBLE
DISABILITIES TO DISCLOSE THEIR
STATUS?
>>TO BE HONEST I'M ALMOST GLAD
YOU ARE ASKING ABOUT TOKENISM
MOST TIME WE ARE NOT THERE YET.
TO BE A TOKEN PERSON THEY HAD TO
HAVE SOMEONE WILL TO BEGIN WITH
AND MOST OF THE FIGHT IS ALONG
LINES INCLUDING DISABILITY AT
ALALL. SO LETS THEM ADDRESS
THOUSAND GET TO THE NEXT STEP
PAST THAT. BUT IN TERMS OF
VISIBLE DISABILITY, NOT UPDATED
BUT INVISIBLY DISABLED P AND IN
ORDER TO DISCLOSE YOU HAVE TO
MAKE PEOPLE FEEL SAFE DOING SO,
NOT AS MUCH WORRIED ABOUT WHAT
KINDS OF DISCRIMINATION THEY ARE
GOING TO FACE IF PEOPLE KNOW
BECAUSE THAT IS FOR MOST PEOPLE,
THE BIG BARRIER, THAT AS ATALKED
ABOUT BEFORE PEOPLE MIGHT NOT
FEEL THEY HAVE DISCLOSE WITHOUT
DOCUMENTATION. THAT'S FIVE
YEARS BETWEEN WHEN I DISCLOSED
BECAUSE I DIDN'T HAVE PAPERWORK
AT THE TIME.
>>I WOULD SAY FOR MULTIPLE
REASONS, THE IDEA OF TOKENISM IN
DEIA IS SOMETHING I HAD PERSONAL
EXPERIENCE WITH. ONE OF THE
THINGS I USUAL USUALLY SAY WHEN
I'M ON ONE OF THESE DEI
COMMITTEES OR WORKING ON
PROJECTS IS THAT I CANNOT BE
EVERYTHING TO EVERYBODY. THE ONE
PERSON REPRESENT THE ENTIRE
DISABILITY COMMUNITY NOR SHOULD
THEY. JUST THINKING ABOUT THE
FACT THAT THERE IS SO MUCH
DIVERSITY WITHIN DISABILITY, AND
THAT'S BECAUSE INDIVIDUAL
CONDITIONS THAT IS BECAUSE I'M A
BLACK LATINA DISABLED PERSON, I
MIGHT NOT HAVE THE SAME
EXPERIENCE AS SOMEONE NOT THOSE
THINGS. SO TRYING TO MAKE SURE
THAT IF YOU ARE TALKING ABOUT
DISABILITY IN DEI YOU GET AS
MANY REPRESENTATIONS AS
POSSIBLEPOSSIBLE. IS SOMETHINGE
SHOULD DO. I THINK THAT ONE
THING WE DON'T DO AS OFTEN AS WE
SHOULD IN MEDICINE IS LOOK
OUTSIDE OF MEDICINE FOR
EXPERTISE. FOR DATA, FOR
WHATEVER OTHER KINDS OF
INFORMATION COULD BE HELPFUL TO
US. SOME OF THE THINGS I TRY TO
ENCOURAGE NOT JUST IN DEI
COMMUNITIES BUT OTHER PEOPLE I
MIGHT BE WORKING WITH IS TO
PARTNER WITH DISABLED PEOPLE IN
THE COMMUNITIES WITH WHICH YOU
ARE TRYING TO WORK. TO MAKE SURE
THE WORK YOU ARE DOING IS
APPLICABLE FOR THEM. ONE THING I
HAD ANOTHER STUDENT OR STUDENT
ASK ME, SPECIFICALLY DOING SOME
WORK WITH LIKE BLACK AUTISTIC
COMMUNITY AND THEY ARE LIKE IT'S
GOOD, WE HAVE REPRESENTATION FOR
THE DISABILITY COMMUNITY. I'M
NOT NEUROTYPICAL BUT I'M NOT
AUTISTIC. SO IF I WANT TO MAKE
SURE I'M HAVING THAT REPRESENTED
IN THE WORK I'M DOING I GOT TO
GET SOMEBODY WHO IDENTIFIES WITH
THAT COMMUNITY, MULTIPLE PEOPLE
TO TRY TO SEE IF I CAN GET THOSE
PERSPECTIVES INCLUDED FROM THE
OUTSIDE OF STARTING ANY SUBJECT.
SO I THINK THAT THAT WOULD BE
ONE WAY NOT JUST HAVING ONE
PERSON IF YOU CAN GET THERE. BUT
TRYING TO SEE THAT IF YOU CAN
GET MULTIPLE PEOPLE TO HAVE
MULTIPLE KINDS OF PERSPECTIVES.
>>ANOTHER WAY TO AVOID TOKENISM
IS TO BE AN ALLY TO OTHERS, I
SHOW UP IN DIVERSITY SPACES AS
DISABLED PERSON BUT ALSO WHITE
MALE THAT GIVES ME CERTAIN
AMOUNT OF PRIVILEGE. DOESN'T
ALLOW ME TO REALLY -- I KNOW
PERSONAL EXMEANS BEING RACIALLY
MINORITIZED INDIVIDUAL SO I HAVE
TO REALIZE THAT MY PERSPECTIVE
IS JUST ONE BUT THAT RECOGNIZING
DIVERSITY OF DISABILITY THAT I'M
THERE TO REPRESENT THE
COMMUNITY. I TRY TO LOOK TO
PRINCIPLES OF DISABILITY JUSTICE
WHICH IS A MOVEMENT STARTED BY
PEOPLE OF COLOR AND SEXUAL AND
GENDER MINORITIES TO ADVANCE THE
INCLUSION, THE TREATMENT P
BASICALLY TO IMPROVE THE
SITUATION FOR DISABLED PEOPLE.
SO I DON'T HAVE THAT EXPERIENCE
BUT THEY HAVE IMPORTANT TENANTS
AS PART OF THEIR MOVEMENT THAT I
TRIED TO IMPLEMENT. ONE OF THOSE
IS CROSS MOVEMENT ORGANIZING.
THUS BECOMING AN ALLY OR BEING
AN ALLY COME IN TO REALIZE THAT
IT IS IMPORTANT WE ALL SUPPORT
EACH OTHER THAT ANTI-RACIST
EFFORTS ALSO ARE ANTI---
ANTI-ABLEIST AND VICE VERSA. THE
LEADERSHIP ARE THE MOST IMPACTED
SO LISTENING TO STUDENTS AND
RESIDENTS AND STAFF AND THOSE IN
LESS PRIVILEGED POSITIONS, AND
FOLLOWING THEIR LEAD SO TO
SPEAK. I THINK YOU HAVE THE
PROGRESS BENEFITS ALL OF US.
>>AWESOME. I DO WANT TO
ACKNOWLEDGE FOR OUR VIEWERS WE
ARE AT PUBLISHED BREAK TIME. BUT
THERE ARE ALL THESE QUESTIONS SO
WE TOTALLY UNDERSTAND IF PEOPLE
NEED TO STEP AWAY BECAUSE THEY
HAVE OTHER COMMITMENTS BECAUSE
IF FOR THOSE WHO HAVE THE
FLEXIBILITY TO STAY, I WOULD
LIKE TO POLL TWO MORE QUESTIONS
FROM OUR PANELISTS. ONE IS A
RELATIVELY LONG WINDED, I WOULD
LIKE TO READ VERBATIM. WE KNOW
FROM PROFESSOR ELIZABETH
MORGAN'S TALK THAT OFTEN
INCREASE KNOWLEDGE AND EDUCATION
REDUCE EXPLICIT BIAS BUT
INCREASE IMPLICIT BIAS. SHE
EXPLAINED THIS SUGGESTS DOCTORS
EDUCATION CONTRIBUTES TO
ABLEISMs MEANS BY PATIENTS IN
HEALTHCARE SETTINGS INTRODUCING
ANOTHER BARRIER. CAN YOU COMMENT
HOW PRACTICERS WITH DISABILITY
REDUCE HARMFUL UNINTENDED
CONSEQUENCE OF INCREASE IMPLICIT
BIAS, DUE TO INCREASED
EDUCATION? HAVE YOU SEEN CHANGES
IN YOUR ABLED COLLEAGUES?
>>I CAN START THIS QUESTION AND
CREDIT TO DR. BETHANY,
DEVELOPMENTAL PEDIATRICIAN. WHO
POINTED OUT THAT IN MEDICAL
TRAINING, WE SPEND THE VAST
MAJORITY OF TIME ON THE
INPATIENT FLOORS IN THE
HOSPITALS. SO SHE COMES FROM
PEDIATRIC BACK GROWN, AS AN
EXAMPLE TALKED HOW WHEN SHE
LEARNED AND COLLEAGUE LEARN
ABOUT KIDS WITH TYPE 1 DIABETES,
THAT THE KIDS THEY SEE IN THE
HOSPITAL ARE GOING TO BE AN
OVERREPRESENTATION OF THE KIDS
WHO HAVE A MORE SIMILAR FORM OF
DISEASE OR HARDER TIME MANAGING
IT AND THAT IS BECAUSE THOSE ARE
THE ONES.
COOING BACK TO THE HOSPITAL. IF
OF A KID WHO GETS HOSPITALSED
DISABILITY DISEASE ONSET AN GOES
HOME AND MANAGES GREAT AND NO
PROBLEMS THEY DON'T PRESENT TO
HEALTHCARE. SO WHAT THAT MEANS
IS THAT AS PHYSICIANS AS WE GO
THROUGH TRAINING, WE ARE
PRESENTED WITH
INCREASINGBLYINGLY SKEWED
PERSPECTIVE OF WHAT LIFE WITH
DISABILITY LOOKS LIKE BECAUSE
WHICH ONLY SEE PEOPLE WILL THE
MOST SEVERE POINTS OF THEIR LIVE
AND WE SEE THEM AT THE WORST
POINT OFTEN IN THAT EPISODE OF
WHATEVER IT IS. AND SO THE WAY
OUR TRAINING IS PUT TOGETHER, IT
IS REALLY IN A WAY SET UP TO
GIVE OUR COLLEAGUES HERE A
REALLY UNDER-REPRESENTED SAMPLE
OF WHAT IT MEANS TO LIVE WITH
ANY CONDITION. THERE'S STUDIES
THAT HAVE SHOWN DIFFERENCES IN
SOME OF THE ASPECT OF BIAS
AROUND DISABILITY RELATED TO
WHAT SPECIALTY PEOPLE WERE IN
FOR THE PARTICULAR SCENARIO THEY
WERE TALKING ABOUT, WHAT POINT
ALONG CARE PATHWAY SEEING
PATIENTS WHETHER THAT IS IN
THERE LIKE INTENSIVE CARE UNIT
WORST POINT VERSUS SOMEBODY SEES
THESE KIDS OUTPATIENT FOR YEARS
AND HEAR ABOUT THEM GOING ABOUT
EVERY DAY LIVES. SO I THINK
THAT'S ONE OF THE REASONS WHY AT
LEAST IN THIS SPECIFIC SETTING,
INCREASED EDUCATION LEADS TO
INCREASE IMPLICIT BIAS. BECAUSE
OF SPECIFICALLY WHAT THAT
EDUCATION ENTAILS. AS DISABLED
PERSON IN MEDICINE ONE THING WE
CAN DO BY BEING THERE AND EVEN
BEING BLANKET DISCLOSING LIKE I
DO WITHOUT SPECIFICS IS IT MAKES
THE POINT TO MY COLLEAGUES THAT
THERE IS -- I LIKE TO PUT IT
PATIENTS DON'T HAVE MONOPOLY ON
DISABILITY. THERE IS MORE
OVERLAP BETWEEN DISABLE
POPULATION AN COLLEAGUES, IT
GIVES AN EXAMPLE OF PEOPLE
DISABLED PEOPLE CAN SUCCEED AND
HAVE CAREERS, CAN BE THEIR
COLLEAGUES. THAT SAN IMPORTANT
PIECE OF WHAT WE CAN DO.
>>THAT WAS ABSOLUTELY FANTASTIC
ANSWER. I COMPLETELY AGREED. I
THIS I THAT PARTICULARLY WITHIN
NEUROLOGY PEDIATRIC NEUROLOGY,
WE ARE NOT SEEING PEOPLE LIKE
YEARS DOWN THE LINE. SO I'M
THINKING MY OWN USING MYSELF AS
AN EXAMPLE, YOU MIGHT SEE THAT
PERSON AT THE MOMENT THEY HAD A
VEHICLE, WE ARE FIRST RESPONDERS
TO STROKE IN THE HOSPITAL. WE
MIGHT SEE THEM OFTEN TO THE
POINT THEY DISCHARGE TO
REHABILITATION FACILITY OR HOME
OR WHEREVER. AND IF WE ARE NOT
WORKING IN STROKE WE DON'T
NECESSARILY SEE THEM FIVE, TEN,
15 YEARS LATER. BY BEING MORE
OPEN ABOUT WHAT MY OWN
EXPERIENCES ARE I CAN TALK ABOUT
THE FACT THAT I'M AN EXAMPLE OF
WHAT CAN HAPPEN, WHAT LIFE CAN
BE LIKE FIVE, TEN, 15 YEARS
LATER. AND I TEND TO
PARTICULARLY WITH MY TRAINEES,
LESS SO THAN WITH COLLEAGUES
THOUGH SURE LET THEM NOTICE
POINT, BE AN EXAMPLE FOR YES,
OKAY, I'M HERE, I'M WORKING I
SEEM LIKE I'M DOING PRETTY WELL,
I LIKE TO THINK THAT I HAVE A
DECENT LIFE, BUT STILL DEALING
WITH AFFECT OF STROKE, CANCER,
PHYSICAL THERAPY, OAR ISSUES SO
IT IS NOT -- OTHER ISSUES COMING
UP SO NOT JUST THIS ONE THING
HAPPENED. THAT'S ALL. YES. I AM
LIVING LIFE AFTER ILLNESS, BUT
STILL LIVING WITH EFFECTS OF IT
BUT ALSO JUST BECAUSE I'M LIVING
WITH THE AFFECT OF IT DOES NOT
MEAN I CANNOT LIVE A HAPPY
SUCCESSFUL PRODUCTIVE LIFE. I
HAVE DEFINITELY NOTICED CHANGES
IN MY COLLEAGUES, AND IN MY
TRAINEES I WAS JUST HAVING A
CONVERSATION WITH THEM NOT TOO
LONG AGO. I HAD GIVEN TALK TO
OUR DEPARTMENT ABOUT INCLUSIVE
COMMUNICATION FOR PEOPLE WITH
DISABILITY AND TALKING ABOUT
ABLEIST LANGUAGE THINGS WE HAVE
TRADITIONALLY SAID WITHIN
NEUROLOGY WAYS WE -- THINGS WE
SHOULD NOT SAY WITH NEUROLOGY. I
WAS NOT EAVESDROPPING BUT
HAPPENED TO BE IN THE ROOM
LISTENING TO COLLEAGUES ONE OF
MY RESIDENTS WAS PRESENTING TO
ONE OF MY COLLEAGUES AND THEY
STARTED USING TERMS LIKE
NON-SPEAKING, THEY WERE USING
WHEELCHAIR USER I WAS LIKE YOU
DIDN'T SAY THAT, I REMEMBER US
HAVING CONVERSATIONS WHERE I
SPECIFICALLY HEARD SOME OF THE
LANGUAGES THAT YOU USED. SO EVEN
THOUGH NOT SPECIFICALLY SAYING
HEY, LOOK AT ME, I'M USING THIS
ABLEIST LANGUAGE, THE FACT THEY
ARE USING IT I GUESS WHEN THEY
DON'T EVEN KNOW THAT I HAVE I'M
IN THE ROOM IS NICE TO SEE
BECAUSE THAT MEANS THAT MAYBE
SOMETHING THAT I HAVE
(INAUDIBLE) TEACH THEM IS
GETTING INTO THE DAILY PRACTICE
>>THIS IS SUCH A GOOD QUESTION.
THE IDEA OF UNINTENDED
CONSEQUENCES IS SOMETHING I
THINK ABOUT A LOT. I WORRY WHEN
I'M GIVING MY TALKS AND SHARING
MY PERSONAL STORY. I HAVE TO ASK
MYSELF IS THIS INSPIRATION PORN
OR TRAUMA PORN, WHY AM I SHARING
THIS? WHAT IS MY GOAL IN SHARING
THIS INFORMATION? AND TRYING TO
DO IT IN WAY THAT DOESN'T
PROMOTE HARMFUL NARRATIVES LIKE
I WAS SAYING THE IDEA OF
OVERCOMING AND THAT IT IS LOOK
AT ME, I GOT PARALYZED NOW I CAN
WALK AGAIN AND I AM AN ATTENDING
PHYSICIAN. I DON'T WANT PEOPLE
TO GET THE IDEA THAT THAT IS
LIKE EASY OR THAT BECAUSE ONE
DISABLED PERSON CAN ACCOMPLISH
SOMETHING THAT ALL DISABLED
PEOPLE SHOULD BE ABLE TO
ACCOMPLISH THEM. I TRIED
DISCLOSE ALL WAYS WHICH
CIRCUMSTANCES OF MY LIFE AN
PRIVILEGE THAT I HAVE ALLOW ME
TO OCCUPY THIS POSITION AND HOW
A LOT OF PEOPLE WITH
DISABILITIES BECAUSE OF THE WAY
OR SOCIETY IS SET UP ARE MORE
LIKELY TO LIVE IN POVERTY, MORE
LIKELY TO LACK SOCIAL SUPPORTS,
TO HAVE OR HEALTH NOT EVERYBODY
HAS OPPORTUNITY TO BE SET UP TO
LIVE UP TO THEIR POTENTIAL AND
TO SUCCUSSE SUCCEED. THIS CAME P
RECENTLY I IN OUR PATIENT FAMILY
ADVISORY COUNCIL WHEN WE WERE
TALKING ABOUT WAYS TO MAKE AN
IMPACT THIS YEAR AND SOMEBODY
SUGGESTED THIS DAY IN THE LIFE
KIND OF THING WHERE YOU CAN PUT
SOMEBODY IN A BLINDFOLD FOR A
DAY AND SIMULATE APPEARANCE OF
BEING BLIND OR PUSH THEM AROUND
IN A WHEELCHAIR AND I STARTED
READING ABOUT THIS AND READING
ABOUT THE UNINTENDED
CONSEQUENCES OF ACTUALLY
DECREASING PEOPLE'S EMPATHY AS
RELATES TO DISABILITY, BECAUSE
QUOTE UNQUOTE IT IS NOT SO BAD
TO BE PUSHED AROUND IN A
WHEELCHAIR ALL DAY OR LIKE NO
BIG DEAL TO BE BLINDFOLDED AND
SORT OF DOESN'T REALLY PROVIDE
LIKE REALISTIC EXPERIENCE OF
WHAT PEOPLE EXPERIENCE ON A
DAY-TO-DAY BASIS. AND OVER TIME.
SO I THINK WE JUST HAVE TO BE
REALLY THOUGHTFUL ABOUT WAYS WE
ENGAGE AND ALWAYS BE ASSESSING
FOR UNINTENDED CONSEQUENCES.
>>THANK YOU ALL. I'M GOING TO
ASK ONE LAST QUESTION AND ENON A
HIGH NOTE A LITTLE BIT. AGAIN,
TO THE AUDIENCE I UNDERSTAND IF
YOU HAVE TO LEAVE. WE WILL HAVE
A BREAK UNTIL 2 O'CLOCK AFTER
THIS. SO THERE IS A QUESTION IN
THE CHAT SAYING PER ANY SPEAKERS
IS THERE A SPECIFIC TIME WHEN
YOU ARE EXPERIENCES HAVE HELPED
IN THE DIAGNOSIS OR TREATMENT OF
A PATIENT OR WHERE YOU WERE ABLE
TO PULL OUT AN INSIGHT OTHER
CLINICAL COLLEAGUES MISSED? THE
DONE REALLY SEE -- YET YET. HAD
THAT TO THE TWO OF YOU.
>>I HAVE HAD A COUPLE OF
EXPERIENCES WHICH HAVE BEEN
GREAT, SOME OF THEM GREAT, SOME
OF THEM NOT THE GREATEST. I
THINK ONE OF THE FIRST ONES THAT
I HAD WAS WHEN I WAS STILL IN
TRAINING AND AT THAT TIME I WAS
TRYING TO -- I WAS -- I GUESS
YOU WOULD SAY DEVELOPMENT WITH
MY OWN DISABILITY IDENTITY AND
TRYING TO FIGURE OUT HOW TO WORK
EVERYTHING OUT FOR MYSELF. SAW
THIS PATIENT WHO WAS YOUNG BLACK
WOMAN COMING IN I SAW HER IN THE
EMERGENCY ROOM SHE WAS COMING
WITH THESE VERY VAGUE
NEUROLOGICAL COMPLAINTS, SHE HAD
BEEN TO A COUPLE OF HOSPITALS
AND - OVER SPAN OF A FEW MONTHS,
SHE TALKED TO PRIMARY CARE AND
FEW OTHER PHYSICIANS OVER THE
SPAN OF NEXT FEW MONTHS. WAS
ALWAYS TOLD IT IS NOTHING, YOU
ARE ANXIOUS, IT IS FINE, GO
HOME. NOW SHE WAS COMING TO OUR
EMERGENCY ROOM AND I HAD TO BE
THE PERSON WHO WAS DOING THE
CONSULT FOR HER. I REMEMBER
DOING HER PHYSICAL EXAM AND
THINKING THERE IS SOMETHING THAT
IS HERE, I JUST CAN'T FIGURE
WHAT IT WAS. ALSO REMEMBER SHE
HAD SOME SIGNS WHERE ONE OF THE
THINGS THEY TEACH YOU ABOUT
WHICH I HAVE VERY COMPLICATED
FEELINGS ABOUT WITHIN NEUROLOGY
IS THE IDEA OF PATIENTS WILL
SOMETIMES EMBELLISH SYMPTOMS.
PUT ON A LITTLE BIT, TO SHOW
WHATEVER IT IS THEY ARE TRYING
TO SHOW. I HAD ACTUALLY HAD A
COLLEAGUE TALK TO ME ABOUT THAT
A FEW WEEKS BEFORE SO BASICALLY
WARN ME AGAINST BELIEVING
PATIENTS SOMETIMES. SO WITH THIS
INDIVIDUAL SEEN IN THE ER, I
NOTICED THAT OKAY MAYBE SHE HAD
A LITTLE BIT OF LIMP BUT DID
SEEM LIKE MORE WHEN I WAS
LOOKING AT IT OPPOSED TO WHEN
SHE WAS WALKING AROUND IN THE
ROOM ON HER OWN. STILL SOMETHING
I COULD NOT GET OUT OF MY HEAD.
SO MY UPPER LEVEL WANTED TO SEND
HER HOME, OUR SERVICE WAS PRETTY
FULL BUT I THOUGHT THERE WAS
SOMETHING ELSE GOING ON AND WE
NEEDED TO SEE WHAT IT WAS. I
THINK OUT OF THE FACT THAT MY
UPPER LEVEL RESIDENT RESPECTED
MY OPINION HE WAS LIKE FINE
BRING HER IN FOR OBSERVATION AND
SEE WHAT IS GOING ON. WE DID A
WORK UP AND DOING SOME IMAGING
AND FOUND OUT SHE HAD A
NEUROLOGICAL DISEASE WHICH WE
COULD HELP AND WE CAN TREAT HER
FOR. ON THE ONE HAND THAT WAS
INCREDIBLY DISTRESSING BECAUSE I
KEPT THINKING HOW LONG IS THIS
WOMAN WALKING AROUND TRYING TO
GET SOMEONE TO TAKE THIS
SERIOUSLY AND THEY HAVEN'T. THE
OTHER HAND, I THINK I'M JUST A
REGULAR RESIDENT, IT MIGHT NOT
HAVE BEEN ME THERE AT THAT NIGHT
AND WOULD SHE STILL BE WALKING
AROUND GETTING HELP AFTER WEEKS
OF TRYING TO GET IN SOMEONE. THE
OTHER THING I WAS THINKING AT
THE SAME TAME, I HAVE A VERY
SIMILAR STORY WHERE IT TOOK
YEARS FOR DOCTOR TO UNDERSTAND
AN LISTEN TO ME WHEN I WAS
SAYING I WAS HAVING SOME KIND OF
ISSUE. AND THEN YEARS BEFORE IT
WAS CORRECTLY DIAGNOSED SO IT IS
A HAPPY NOT HAPPY BECAUSE SHE
REALLY DOES HAVE A NEUROLOGICAL
DISABILITY NOW BUT HAPPY THAT I
THINK SHE FELT VALIDATED FOR THE
FIRST TIME IN HER CARE. AND I
FELT HAPPY THAT I COULD BE THAT
PERSON TO GIVE HER THAT
VALIDATION SUPPORT AND I THIS I
THAT IS ONE OF THE CASES, I KNOW
EVERYBODY HAS SEVERAL THAT
CHANGED TRAJECTORY OF LIFE,
LUCKILY I HAVE LOTS OF
OPPORTUNITIES TO INTERACT WITH
OTHER DISABLED PEOPLE WROTE AN
ARTICLE AND WRITING ANOTHER ONE
THAT IS ABOUT SOME OF THESE
INSTANCES AROUND DISCLOSURE.
PARTICULARLY FOR KIDS WITH
DISPARITIEDISABILITY TO SHADDOCD
SIMILAR KINDS OF THINGS. SO YEAH
I THINK IT IS SOMETHING THAT HAS
BEEN -- BEING HAVING MY ILLNESS
WOULD HAVE CHANGED TRAJECTORY OF
MY CAREER ANYWAY, BUT I THINK
THAT ALL OF THIS IN PARTICULARLY
CONNECTING WITH OTHER DISABLED
PEOPLE AND BEING ABLE TO HAVE
THOSE MOMENTS WHERE WE SEE EACH
OTHER OR UNDERSTAND WHERE WE ARE
COMING FROM, IS VALUABLE TO MY
DEVELOPMENT AS PHYSICIAN AND
MADE ME EVEN MORE PASSIONATE
ABOUT CARING FOR DISABLED PEOPLE
IN MEDICINE.
>>I CHOSE TO NOT SEE PATIENTS
ANY MORE AFTER MY DISABILITY. I
THOUGHT ABOUT DOING A FELLOWSHIP
IN SPINAL CORD INJURY WHICH
WOULD HAVE BEEN LIKE ONE YEAR
AFTER MY -- IT WOULD HAVE BEEN
ONLY A ONE YEAR BUT WHEN I WENT
INTO THE SPINAL CORD INJURY UNIT
I HAD SERIOUS PTSD TYPE SYMPTOMS
AND STARTED FEELING VERY UNWELL.
SO I DIDN'T WANT MY LIFE TO
REVOLVE AROUND MY DISABILITY SO
DECIDED TO RETRAIN. I WOULD SAY
MOST OF MY INSIGHTS HAVE COME
FROM OTHER SIDE. LIKE THINGS I
HAVE LEARNED AS A PATIENT THAT
CAN HELP THE HEALTHCARE SYSTEM
OR HELP EDUCATE OTHER DOCTORS.
RATHER THAN MY DISABILITY GIVING
ME THE INSIGHT TO HELP OTHER
PEOPLE. BUT I HAVE HEARD FROM A
LOT OF OTHER DISABLED
PHYSICIANS, SIMILAR STORIES TO
WHAT DIANA SAID, WHERE ONE'S
INSIGHT AND THE CHANGES AND
TYPES OF QUESTIONS THEY ASK AND
THE LENS THEY TAKE AFFECTED BE I
THEIR DISABILITY HAS LED TO
BETTER INSIGHTS INTO WHAT A
PATIENT NEEDS AND INTO MAKING
IMPORTANT DIAGNOSES. NOT JUST
DIAGNOSES BUT TREATMENT PLANS
THAT MATTER.
>>THAT IS AN NIH EVENT RESEARCH
AGE L A BIT NOT JUST CLINICAL
SPACE BUT DOING RESEARCH MANY A
POPULATION THAT I'M PART OF IS
ALSO INFLUENCED BIT OF HOW I
APPROACH RESEARCH AND WHAT I
TALK ABOUT AS I HAVE BEEN
REALIZING DISCUSSION CHAPTER IN
MY Ph.D. IS MY CHANCE TO GET
ON ALL THE SOAP BOXES. THAT
INCLUDES THINGS LIKE I WORK ON
OUTCOME PREDICTION,
DEVELOPMENTAL OUTCOME PREDICTION
AND PRE-TERM BIRTH. WHEN PEOPLE
HEAR AND THINK ABOUT THAT IN A
RESEARCH SPACE THEY THINK OH
RIGHT WE CAN DECIDE WHICH TO
REALLY GET ON REFERRALS FOR
EARLIER EX MANIED THAT IS
IMPORTANT BUT ALSO I'M BRINGING
TO THE TABLE THE IDEA WE NEED TO
THINK ABOUT THESE ARE
POTENTIALLY KIDS WHO MIGHT NEED
TO GET INTEGRATED TO DISABILITY
COMMUNITY CENTER START PLANNING
ACCOMMODATIONS AND WRITING SECS
IN THERE THOSE RE-- SECTIONS IN
THOSE RESEARCH SHOWING THAT,
BEING IN THE GENERAL CULTURAL
MILIEU, PARENTS ARE PROBABLY
BRINGING ABLEISM INTO THIS
CHILD'S LIFE BEGINNING AND HOW
WE HELP THEM WORK THROUGH THAT
MORE QUICKLY. THESE ARE ASPECTS
THAT WOULDN'T HAVE COME UP IF I
HAD JUST BEEN STANDARD PERSON
COMING TO THIS RESEARCH SPACE.
BRINGING DIFFERENT ASPECT OF
LIFE AND THINKING ABOUT THE
WIDER RANGING IMPACT BECAUSE I
WORK ON MOTOR DISABILITY IT IS
NOT JUST DO THESE KIDS WALK AND
HOW WELL BUT HOW IT IMPACTS
SCHOOL, MAKING FRIENDS AND GOING
ABOUT HAVING HOBBIES AND ALL IN
THIS DIFFERENT ASPECTS OF LIFE.
SO BRINGING THAT BROADER
PERSPECTIVE AND THINKING ABOUT
MORE THAN NARROW MEDICAL
COMPONENT IS AN IMPORTANT THING
THIS CAN BRING TO THE RESEARCH
SPACE.
>>SO WE ARE NOW 20 MINUTES PAST
OUR SUPPOSED END OF OUR SESSION
WHICH I THINK SPEAKS JUST TO THE
AMAZING EXPERTISE AND PRESENCE
OF OUR SPEAKERS, AND TO THE HIGH
LEVEL INTEREST IN THIS TOPIC. I
DO WANT TO APOLOGIZE TO THOSE
WHO PUT IN QUESTIONS THAT WE
WESTERN ABLE TO GET TO. WE WILL
TRY TO RESPOND TO THEM OUTSIDE
THE MEETING AS MUCH AS WE CAN. I
WANTED TO EXTEND MY OWN
INCREDIBLY DEEP PERSONAL
GRATITUDE TO OUR THREE SPEAKERS
WHO HAVE BEEN AMAZING TO WORK
WITH AND PLANNING THIS SESSION
AND FROM WHOM I LEARNED
INCREDIBLE AMOUNT TODAY. THANK
YOU VERY MUCH. I AM GOING TO
SEND US ALL TO OUR BREAK WHICH
WAS ORIGINALLY A ONE HOUR BREAK
AN NOW 40 MINUTE BREAK. TO THOSE
OF YOU ON ZOOM, PLEASE STAY LOG
ON TO ZOOM, WE ARE GOING TO PUT
UP A BREAK SLIDE AND PLEASE
RETURN ON THE HOUR. 2 P.M.
EASTERN AND I CAN'T DO THE MATH.
1 P.M. CENTRAL, NOON MOUNTAIN
AND 11 A.M. PACIFIC. MY DEEPEST
GRATITUDE TO YOU ARE SPEAKERS
AND TO ALL OF THOSE WHO ARE
PARTICIPATING IN THIS
DISCUSSION. HAVE A GOOD DAY.
>>WELCOME BACK, EVERYBODY TO
THE ABLEISM WORKSHOP.
WE HAVE LOTS MORE REALLY
EXCITING AND INTERESTING
ACTIVITIES OR SPEAKERS FOR THE
REMAINDER OF TODAY.
I HOPE YOU WILL STICK AROUND
FORT REST OF THE AFTERNOON.
WE WILL BEGIN WITH SESSION 4
OPPORTUNITIES TO ADDRESS ABLEISM
IN THE BIOMEDICAL RESEARCH
COMMUNITY.
I'M SORRY -- I WASN'T ON CAMERA.
THERE WE GO.
SO, I AM -- MY NAME IS KATHY
MANN KOEPKE AND I'M FROM THE
CHILD AND HEALTH AND HUMAN
DEVELOPMENT.
I'M HONORED TO SERVE AS A
MODERATOR AT THIS INCREDIBLY
IMPORTANT MEETING WHICH HAS
ALREADY GUN HUGELY INFORMATIVE,
EDUCATIONAL AND I ANTICIPATE
THAT IT WILL CONTINUE TO BE
UNTIL LAST MINUTE.
I FIE AS A WHITE HISPANIC WOMAN
WITH MULTIPLE ONSET DIAGNOSIS
THAT TOGETHER WITH THE WORLD I
LIVE IN, HAS CREATED BARRIERS TO
FULL INCLUSION.
I HAVE SALT AND PEPPER,
SHOULDER-LENGTH WAVY HAIR AND
WEARING RIM LESS EYEGLASSES AND
A BLACK AND WHITE LEAF MOTIF
BLOUSE AND A BLACK JACKET.
I ALSO IDENTIFY AS A MOM OF A
PERSON WHO ALSO IS IDENTIFIED AS
DISABLED WITH DIAGNOSIS
UNRELATED TO MY OWN.
PROFESSIONALLY, I IDENTIFY AS A
LIFE COURSE DEVELOPMENTAL
COGNITIVE NURSE
SCIENTIST/EYECOLOGIST WITH A
FOCUS ON THE NEUROBIOLOGY OF
LEARNING AND NEURO COGNITIVE
DEVELOPMENT AND COGNITIVE
DISABILITIES IN LEARNING AND
COGNITION.
THROUGHOUT THE LIFE, BOTH IN
HUMAN AND ANIMAL MODELS.
IN ADDITION TO MY MORE TYPICAL
ACADEMIC ACHIEVEMENTS, I TAKE MY
PASSION AND ADVOCACY TO RACE UP
THE VOICES OF PERSONS WITH
ABILITY DIFFERENCES OF ALL
TYPES, TO THE COMMUNITIES WHERE
I LIVE AND WORK.
I'M A BIG BELIEVER OF VOLUNTARY.
I I'D LIKE TO REMIND EVERYBODY
HOW WE PLAN TO MOVE FORWARD WITH
THIS PANEL, AND I'LL INTRODUCE
EACH SPEAKER FOLLOWED BY THEIR
PREVIOUS PRESENTATION AND HAVE A
CHIEF ANSWER AND ANSWER PERIOD.
DON'T FORGET THOSE IN THE
AUDIENCE TO ENTER YOUR QUESTIONS
INTO THE Q&A SECTION AND NOT AND
I WILL APOLOGIZE IF WE CAN'T GET
TO YOUR ANSWERS.
WE WILL ANSWER THEM LIVE DURING
THE MEETING OR BY E-MAIL AFTER
THE MEETING.
LET ME FIRST OUR FIRST SPEAKER
AND MYA SABATELLO IS AN
ASSISTANT PROFESSOR OF CLINICAL
BIOETHICS IN THE DEPARTMENT OF
PSYCHIATRY AT COLOMBIA
UNIVERSITIES SHE HOLDS A PH.D
FROM THE UNIVERSITY OF SOUTHERN
CALIFORNIA AND A LLB FROM THE
HEBREW UNIVERSITY OF JERUSALEM.
SHE WAS APPOINTED AS A RESEARCH
FELLOW IN MEDICAL ETHICS AND
HARVARD UNIVERSITY'S MEDICAL
SCHOOL IN 2011 AND SHE HAS
LITIGATED CASES FOR MEDICAL
NEGLIGENCE AND HAS WORKED AS A
LEGAL ADVISER AT NATIONAL AND
INTERNATIONAL NON GOVERNMENTAL
ORGANIZATIONS TO PROMOTE
HEALTH-RELATED HUMAN RIGHTS AND
DISABILITY ISSUES.
AS A PERMANENT REPRESENTATIVE
FOR NON GOVERNMENT ORGANIZATIONS
AT THE UNITED NATIONS, SHE ALSO
PARTICIPATES IN THE U.N.
SESSIONS ON THE FORMULATION OF
THE CONVENTION ON THE RIGHTS OF
PERSONS WITH DISABILITIES.
SO, WELCOME, MAYA AND PLEASE,
TAKE IT OVER.
>>THANK YOU SO MUCH, KATHY, I
APPRECIATE IT.
IT'S GREAT TO BE HERE.
THANK YOU FOR IN INVITING ME AND
WHAT A WONDERFUL CONFERENCE.
I AM AN ASSOCIATE PROFESSOR AT
COLOMBIA UNIVERSITY CENTER FOR
PRECISION MEDICINE AND GENOMICS
AND THE DIVISION OF ETHICS.
AND -- AND PROCEDURE MEDICINE
AND RESEARCH AND OTHER
SCRIPTERS, I AM A WHITE WOMAN
WITH LONG CURLY, DARK HAIR.
ROUND, BLACK AND PURPLE GLASSES
AND WEARING A BLACK SHIRT AND A
TURQUOISE BLAZER.
I'M A LOW-VISION INDIVIDUAL AND
SHARE BONNIE'S COMMENTS
YESTERDAY MORNING ABOUT
IDENTITIES.
I WANT TO SHARE MY SLIDES.
ALL RIGHT.
SO -- CAN.
>>CAN YOU MOVE INTO PRESENTER
MODE, PLEASE.
>>THERE WE GO.
>>CAN YOU SEE IT?
>>YES.
>>FANTASTIC.
THANK YOU.
SO, THE TITLE OF MY TALK IS
INCLUSION OF PEOPLE WITH
DISABILITY AND BIOMEDICAL
RESEARCH WITH A QUESTION MARK.
AND WHAT I HOPE TO DO AND I'LL
DISCUSS ABLEISM AND DISTRUST IN
BIOMEDICAL RESEARCH FOCUSING ON
TWO STUDIES, THREE ACTUALLY,
BOTH IN CLINICAL TRIALS AS WELL
AS PRECISION MEDICINE RESEARCH
AND I'LL MOVE FORWARD TO DISCUSS
THE DISABILITY ASPECTS FOR
EQUITABLE INCLUSION IN
BIOMEDICAL RESEARCH.
BEFORE WE MOVE ON, I DO ALSO
WANT TO GIVE A STATEMENT HERE, A
DISCLAIMER, I'M AN IRB MEMBER OF
THE ALL OF US RESEARCH PROGRAM
SO MY PRESENTATION IS IN MY
PERSONAL CAPACITY.
I WANT TO USE SOME UNPUBLISHED
MATERIALS SO PLEASE DO NOT USE
IT WITHOUT PERMISSION.
SO, THE DEFINITION OF STRUCTURAL
ABLEISM THAT HELPS ME AS WE GO
ALONG WITH THE PRESENTATION, I'M
LOOKING AT DEFINITION WHICH IS A
SYSTEM THAT PLACES VALUE ON
PEOPLE'S BODIES AND MINDS BASED
ON SOCIETALLY CONSTRUCTED IDEAS
OF NORMALCY, INTELLIGENCE,
EXCELLENCE AND PRODUCTIVITY.
THIS FORM OF SYSTEMIC OPPRESSION
LEADS TO PEOPLE AND SOCIETY
DETERMINE HOG IS VALUABLE AND
WORTHY BASED ON A PERSON'S
APPEARANCE AND OR THEIR ABILITY
TO SATISFACTORILY REPRODUCE,
EXCEL AND BEHAVE.
THE HIGHLIGHTS IS THE SOCIETAL
DELINEATION OF NORMAL AND TO
DECIDE ABOUT WHO IS WORTHY OF
INCLUSION AND I WANT TO
HIGHLIGHT THE SYSTEMIC NATURE
THERE OF ALL LEVELS OF SOCIETY
ACROSS THE SYSTEMS AND
ORGANIZATIONS AND ALSO THAT
STRUCTURAL ABLEISM IS
INSEPARABLE FROM OTHER FORMS OF
DISCRIMINATION INCLUDING SEXISM,
RACISM, CLASSISM AND OTHERS.
SO, WHAT DO WE KNOWS WHEN IT
COMES TO PEOPLE WITH
DISABILITIES IN BIOMEDICAL
RESEARCH AND THE REGULATIONS FOR
RESEARCH WITH HUMAN SUBJECTS,
DEVELOPED IN THE BACKGROUND ON
THE BACKGROUND OF WORLD WAR II
AND THE HISTORY OF ABUSE OF
PEOPLE WITH DISABILITIES AND
RESEARCH FROM THE NAZI REGIME TO
STUDIES THAT WERE CONDUCTED ON
PEOPLE WITH DISABILITIES, AND I
GUEINSTITUTIONS IN THE UNITED
STATES AND ELSEWHERE WITHOUT
CONSENT AN HYPED CLOSED DOORS.
EXPOSING PEOPLE WITH
INTELLECTUAL VISIBILITIES WITH
VIRUSSORS RADIATION.
WE HAVE FEDERAL REGULATIONS OF
RESEARCH THAT AIM TO ADDRESS
SOME OF THESE ISSUES AND ABUSES.
AND THEY MOVED TO CREATE
PROTECTION OF VULNERABLE
POPULATIONS WHICH FROM THE
REGULATIONS INCLUDES CHILDREN,
PRISONERS, PREGNANT WOMEN,
MENTALLY DISABLED PERSONS OR
ECONOMIC OR EDUCATIONAL
DISADVANTAGED PERSONS.
AND THEY REQUIRE ALSO PROXY OR
GUARDIAN CONTENT WHEN
INDIVIDUALS CANNOT PROVIDE
CONSENT.
SIGNIFICANTLY, NIH POLICY
REGARDING PEOPLE WITH SO-CALLED
QUESTIONABLE CAPACITY TO
CONCEPT, WHICH HAVE INCLUDED
PROHIBITS CATEGORIC ALEX
CONCLUSION AND REQUIRES
ASSESSMENT OF CAPACITY TO
CONSENT.
SO THAT EFFORTS TO PROTECT FROM
ABUSE ON THE ONE HAND, ON THE
OTHER HAND INSURING
INDIVIDUALIZED CAPACITY
ASSESSMENT SHOULD ALLOW FOR IN
CONCLUSION OF PEOPLE WITH DIS
AMOUNTS IN DIVERSE RESEARCH
PROJECTS.
THAT DOES NOT SEEM TO BE THE
CASE.
IN A STUDY WITH MY COLLEAGUES
Dr. KATIE MCDONALD'S FROM
SYRACUSE UNIVERSITY AND Dr.
SCHWARTZ FROM THE INSTITUTE OF
HEALTH PROFESSIONS IN BOSTON,
WHICH YOU CAN SEE THE FIRST PAGE
OF THE MANUSCRIPT ON THE RIDE OF
THE SLIDE AND WE LIKED AT TRIALS
ON GOING AND THAT WERE OPEN TO
WORKING AGE VICTIMS FROM THE
GENERAL PUBLIC BETWEEN
FEBRUARY 2018 AND FEBRUARY 2021
AND WE FOCUSED ON CLINICAL
TRIALS TWO OR THREE AND FOUR AND
ARE LESS RISKY WITH PHASES 3 AND
4.
WE IDENTIFIED INCLUDES BASED ON
INTELLECTUAL DISABILITY AND
HIGH-IMPACT ON ADULTS WITH
DISABILITIES AND THAT INCLUDES
FUNCTIONAL CAPACITY AND SUCH AS
NON PERFORMING CERTAIN TASKS OR
SELF-CASE, ABILITY TO READ AND
WRITE AND TECH DIVIDE AND STAFF
DISCRETION.
AND CHRONIC CONDITIONS AT 10.1%
AND INFECTIOUS DISEASES AT 8.9%
AND COVID-19 STUDIES AT 7.3%.
MOST OF THE STUDIES WERE PHASE 3
WHICH JUST TO EXPLAIN THAT IS
THE FINAL PHASE BEFORE A
TREATMENT RECEIVED FDA APPROVAL.
FOLLOWED BY PHASE 4 WHICH WE HAD
32%, PHASE 3 WE HAD 54.8% AND
PAGE 4 WE HAD 32.7% WHICH COMES
AFTER THE FDA APPROVAL IT'S
ESSENTIALLY THE MONEY TOURING
PHASE OF THE EXPERIMENTED
TREATMENT.
SO, WHAT ARE OUR FINDINGS IN
TERMS OF INCLUSION?
OF PEOPLE, ADULTS WITH
INTELLECTUAL DISABILITIES IN
THESE NIH FUNDED CLINICAL
TRIALS.
SO, THE FIRST THING WE FOUND
WHICH THE GOOD NEWS IS THAT WE
FOUND LESS DIAGNOSTIC BASED
EXCLUSIONS THAN WE THOUGHT WE
WOULD FIND JUST ABOUT FIVE
PERCENT AND ANOTHER SIX PERCENT
THAT WERE INCLUDED BASED ON
COGNITIVE CAPACITY.
HOWEVER, THE LESS GOOD NEWS IS
THAT EXPLICIT INCLUSION IS RARE
ONLY 12.7% OF THE 220 ADULT-ONLY
STUDIES ALLOWS CONSENT OF
ILLEGALLY AUTHORIZED
REPRESENTATIVES TO PROVIDE
CONSENT AND ONLY ONE STUDY
PROVIDED ACCOMMODATIONS AND ALSO
HERE IT WAS A QUESTION OF
ALLOWING SOME READINGS
ASSISTANCE IN ORDER FOR A
INDIVIDUAL TO PARTICIPATE IN THE
STUDY.
OVER ALL THERE ARE CRITERIA AND
ADULTS WITH I AM ELECT ACTUAL
DISABILITIES FROM CLINICAL
TRIALS AND THE IMAGE OF THE
RIGHT OF THE SLIDE SHOWS THAT
THE EIGHT LAYERS OF DIRECTOR
INDIRECT EXCLUSION CRITERIA WE
HAVE.
I'LL JUST KIND OF SAY THAT OVER
ALL, FINDINGS HERE, THAT ABOUT
33% OF THE STUDIES HAVE DIRECT
EXCLUSION CRITERIA BASED ON, FOR
EXAMPLE, CONSENT CAPACITY,
DIAGNOSIS OF INTELLECTUAL
DISABILITIES, COGNITIVE
CAPACITY, OR CAPACITY TO ENGAGE
IN THE STUDIES THAT IS A
PRESUMPTION OF EXCLUSION ON
THOSE GROUNDS.
AND 65% OF THE STUDIES HAVE
INDIRECT EXCLUSION CRITERIA AND
AGAIN I WANTED TO HIGHLIGHT A
FEW IMPORTANT FACT HERE.
ONE IS THAT MEASUREMENTS OF
CAPACITY FOCUSED MOSTLY ON OR
ALMOST OVERWHELMING CONDITION,
IT'S HOW ADULTS DO BUT NOT WITH
THE BASELINE OF INTELLECTUAL
ABILITIES OR INTELLECTUAL
DISABILITY ANDS ALSO MEASUREMENT
OF CAPACITY.
THE CAPACITY TO CONSENT OR TO
READ LARGELY ARE MISSING, ONLY
FOUR OF THE 220 STUDIES FOR
ADULTS INCLUDE ASSESSMENT FOR
INDIVIDUAL CAPACITY TO CONSENT.
ANOTHER THING IS THAT THE
STUDIES THAT DID INCLUDE
MEASUREMENTS, WHICH FOCUSES ON
FUNCTIONSAL CAPACITY, FOCUS ON
CONDITIONS SPECIFIC CONDITIONS,
NOT TAKING INTO A COUNT THE
BASELINE OF WHERE THIS PERSON
STARTS AND WHERE THAT PERSON IS
AROUND THE PROCESS.
AND THEY FOCUSED ONLY INDIVIDUAL
ASSESSMENTS WITHOUT SUPPORT SO
ANYONE WHO NEEDED SUPPORT
ESSENTIALLY WAS NOT ASSESSED
ACCORDING TO A SUPPORTED SYSTEM
IN ANYWAY BUT IT WAS REALLY AN
INDIVIDUALIZED ASSESSMENT HERE.
AND THEN, THE OTHER THING TO
POINT OUT IS THE CATEGORIES OF
EXCLUSION, IT WILL LOOK AT THEM
OVER ALL, NEARLY 50% OF ALL THE
STUDIES THAT EXCLUDE ADULTS WITH
INTELLECTUAL DISABILITIES, ARE
BASED ON RESEARCH STAFF
DISCRETION AND IT WILL HAVE
DISCRETION IT IS VERY BIG AND
VERY CATCH-ALL CATEGORY WITHOUT
CLEAR EXPLANATION OR HOW
DECISIONS ARE TO BE MADE AND SO
THAT EP INCLUDES STATEMENTS OF
JUST THAT THE RESEARCH STUFF
DOES NOT THINK AND THAT IS ONE
CAN CONSENT OR THEY'RE MORE
ISSUES ABOUT, THAT THERE MIGHT
BE A HEALTH CONDITION THAN MIGHT
INTERACT BUT THERE'S NO CLEAR
EXPLANATION OF ASSESSMENT OF
REQUIREMENTS OF WHO IS ASSESSING
BY WHAT CRITERIA SO IT'S LIKELY
TO EMBED AND PURSUE INCAPACITIES
THAT SNEAK INTO THE DECISIONS
ABOUT WHO WILL BE INCLUDED OR
EXCLUDED IN THIS STUDY.
AND THEN FINALLY IT'S AN
IMPORTANT COMMENTS OR FINDINGS
IS THAT WE FOUND MULTIPLE I
GUESS CONCLUSION ARY CRITERIA
AND 70% OF THE DIRECT EXCLUSION
CRITERIA INLEWD INDIRECT
EXCLUSION CRITERIA AND 45% WAS
MORE THAN ONE DIRECTOR INDIRECT
EXCLUSIONARY CRITERIA SO IF WE
LOOK AT THE NUMBER OF INSTANCES
WHERE PEOPLE WITH INTELLECTUAL
DISABILITIES MIGHT BE INCLUDED
IN STUDIES, WE COME DOWN TO JUST
ABOUT 25% OF NIH FUNDED CLINICAL
STUDIES.
AGAIN, EVEN HERE, MOST OF THEM
WOULD BE IN THE CONTEXT OF
CANCER AND ONE OF THE THINGS
THAT I DID WANT TO POINT OUT,
THIS IS ANOTHER TABLE THAT KIND
OF SHOWS THAT THERE'S HIGHLY
LIKELY FROM DEVELOP RANT STUDIES
FOR ADULTS WITH INTELLECTUAL DIS
A LOTS, WE CAN SEE THAT CANCER,
THE LIKELY EXCLUSION IS VERY
HIGH IN STUDIES ABOUT CANCER,
CHRONIC CONDITIONS, INFECTIOUS
DISEASES AND SUBSTANCE USE.
ALL OF WHICH HAVE SIGNIFICANT
RELEVANCE FOR THIS POPULATION
AND WE KNOW FROM STUDIES THAT
COMPARED TO PEOPLE WITHOUT
INTELLECTUAL DISABILITIES,
PEOPLE WITH DISABILITIES ARE
THREE TO FOUR TIMES MORE LIKELY
TO EXPERIENCE, HAVE LATE
DIAGNOSIS AND DIE FROM THESE
CONDITIONS SOP GOING BACK TO THE
DEFINITION OF STRUCTURAL
ABLEISM, THIS EXCLUSION IS NOT
ONLY ONE ABOUT INCLUSION AND
WHETHER STUDY FINDINGS WILL BE
GENERALIZABLE, TO THE POPULATION
OF ADULTS WITH INTELLECTUAL
DISABILITIES BUT IT SENDS A
MESSAGE, EVEN IF UNINTENTIONALLY
THAT CURING AND TREATING THESE
CONDITIONS IT WILL ADULTS WITH I
AM ELECT ACTUAL DISABILITIES IS
NOT A PRIORITY.
PERHAPS BECAUSE THIS POPULATION
IS NOT WORTHY OF INVESTMENT.
THAT'S EXACTLY THE IDEA OF
STRUCTURAL ABLEISM OF THE
DELINEATE HOG WHO IS IN WHO ARS
OUT ON THE BASIS OF CATEGORY AND
DECISIONS ABOUT THE NORMAL AND
THE AB NORM A WE'RE NOT ALONE IN
OUR STUDY LOOKING AT STUDIES IN
THE PAST 15 YEARS, WE CAN SEE ON
THIS SLIDE.
IMAGES OF FOUR OTHER STUDIES
THAT FOUND SIMILAR EXCLUSION OF
ADULTS WITH INTELLECTUAL
DISABILITIES OR PSYCHIATRIC
CONDITIONS FROM DIFFERENT
CLINICAL TRIALS INCLUDING TO
IMPROVE MEDICATIO MEDICINE ADHES
WELL AS A MORE RECENT STUDY IN
THE U.S. THAT FOUND SIMILAR
EXCLUSION FROM CLINICAL TRAILS
AS WE DID AND NOT ONLY FOR
PEOPLE WITH INTELLECTUAL
DISABILITIES BUT ALSO FOR PEOPLE
WITH DISABILITY MORE GENERAL.
SO MOVING TO PRECISION MEDICINE
RESEARCH, THIS IS A GROWING
AREA, A PROMISING ENDEAVOR IN
BIOMEDICAL RESEARCH AND LESS
RISKY FOR PRECIPITATION AND
WE'RE TRYING NEW DRUGS, WE'RE
TRYING NEW INTERVENTIONS AND
THERE'S ALWAYS CONCERN ABOUT
POTENTIAL HARM.
WITH PRECISION MEDICINE
RESEARCH, IT AIMS TO IDENTIFY
TRAILER AND HEALTH CONDITIONS IT
TAKES A HOLISTIC AND
PERSON-CENTERED APPROACH
INCLUDING INFORMATION ON
INDIVIDUALS, BIOLOGICAL AND
GENETIC, ENVIRONMENTAL AND
LIFESTYLE CHOICES WHICH I USE
HERE ON THE RIGHT SIDE OF THE
SLIDE ALSO AN IMAGE FROM THE ALL
OF US RESEARCH PROGRAM.
IT PROMISES TO REDUCE HEALTH
DISPARITIES WITH SOME FOCUS ON
THOSE EXACT CHRONIC CONDITIONS
THAT ARE DISPROPORTIONATELY
BURDENING UNDERSERVED AND UNDER
REPRESENTED POPULATION AND HAS A
STRONG COMPONENT OF COMMUNITY
ENGAGEMENT AS A PATHWAY OF
IMPROVING OF INVOLVEMENT OF
INCREASED REPRESENTATION AND
STUDIES AND IMPROVED HEALTH
OUTCOMES IN THE LONG-TERM.
NOW AGAIN, THE ALL OF US
RESEARCH PROGRAM IS THE NATIONAL
PRECISION MEDICINE RESEARCH
PROGRAM AND IT'S BEEN SUCCESSFUL
IN RECRUITING VICTIMS FROM
HISTORICALLY UNDER REPRESENTED
COMMUNITIES AND I KNOW CHARLES
WILL DISCUSS IT IN A FEW
MINUTES.
THERE ARE MANY PRECISION
MEDICINE STUDIES IN THE UNITED
STATES AND ALL OF THE LARGE
MEDICAL CENTERS IN THE COUNTRY
AND ELSEWHERE, AND THAT THE
PRACTICES AND PROCEDURES AND
APPROACHES IN THOSE LOW CALL
PRECISION MEDICINE PROGRAMS VARY
SIGNIFICANTLY.
WHAT DO WE KNOW ABOUT PEOPLE
WITH DISABILITIES IN PRECISION
MEDICINE RESEARCH?
IT WILL NOT BE SURPRISING AS A
FIRST THING, WE DON'T HAVE
COMPREHENSIVE DATA.
REALITY IS THAT IN MOST PRE
SESSION AND IN A NATIONAL SURVEY
THAT WE CONDUCTED ABOUT 1300
PARTICIPANTS WITH DIVERSE
ABILITIES, IN 2018, WE FOUND
HIGH INTEREST IN PARTICIPATION
ACROSS DISABILITY SUBGROUPS,
ESPECIALLY BLIND, LOW VISION
VICTIMS.
WE FIND THEY WERE VERY MUCH
INTERESTED IN PARTICIPATION AND
THEY THOUGHT THIS WOULD BE
VALUABLE AND THEY WERE WILLING
TO PROVIDE A RANGE OF DATA FOR
PRECISION MEDICINE RESEARCH AND
EXPRESS INTEREST IN RECEIVING
BACK A RANGE OF WE ALSO FOUND
BARRIERS FOR THEIR INCLUSION AND
CONCERNS THAT INDICATED THIS.
SO GOING INTO GOES CONCERNS,
THERE WERE TREMENDOUS CONCERNS
ABOUT ACCESS AND COMMUNICATION
BARRIERS.
THE KEY ONCE HERE IS YOU CAN SEE
ON THIS SLIDE, AND AGAIN,
SUMMARIZED AS WELL IS THAT
TRANSPORTATION COST IN
AVAILABILITY WERE SELECTED BY
MORE THAN 41 TO 53% FOR EXAMPLE
THAT'S MOST AND AGAIN WE HAD
ALMOST 1300 PARTICIPANTS.
INACCESSIBLE FACILITIES AND
EQUIPMENT WERE SELECTED BY 56%
OF OUR PARTICIPANTS AND
INACCESSIBLE INFORMATION WAS
SELECTED BY 43% OF OUR
PARTICIPANTS AND COMMUNICATION
WITH RESEARCH -- COMMUNICATION
WITH RESEARCHERS IS DIFFICULT
AND WORRIES THAT BY 44% OF OUR
PARTICIPANTS AND THESE FINDINGS
RESINATE WITH FINDINGS ON
CLINICAL SETTINGS AND OF COURSE,
WE SAY IT'S ONLY WONDERFUL WORK
AND SEMINAR WORK ON CLINICIANS
AND ATTITUDES TOWARDS PEOPLE
WITH DISABILITIES END INDICATING
THAT THE LIMITED KNOWLEDGE IS
DISABILITY ACCESSIBILITY AND
ACCOMMODATIONS PROVIDING THESE
PATIENTS WITH DISABILITIES AND
OF COURSE, MORE BIAS IS ABOUT
THE QUALITY OF LIFE AND SO
FOURTH.
WE FOUND HARM RELATED WORK AND
OUR PARTICIPANTS AND INCLUDE A
THIRD AND THAT IT MIGHT HARM
PEOPLE LIKE THAT AND RESEARCHERS
DO NOT KNOW THAT SO THESE
BARRIERS INDICATE DISTRUST,
SIGNIFICANT DISTRUST AND IT HAS
SHOWN IN STUDIES WITH
MARGINALIZED AND COMMUNITIES A
SITUATION THAT HAS NEGATIVE
IMPACTS ON HEALTH OUTCOMES AND
RESEARCH COLLABORATION AND
DISTRUST IS ASSOCIATED WITH
DISTRUST IN THE RESEARCH
FINDINGS AND THEIR
GENERALIZABILITY BECAUSE FOLKS
LIKE ME ARE NOT INCLUDED IN
BIOMEDICAL RESEARCH, HOW DO WE
KNOW THE FINDINGS ARE APPLICABLE
TO US AS WELL.
SO WITH THIS IN MIND, I'M
CURRENTLY LEADING ANOTHER
COMMUNITY BASED PARTICIPATORY
STUDY WITH LOW VISION ADULT,
DEAF AND HARD OF HEARING ADULTS
AND ADULTS OF WITH DISABILITY
AND WITH A GOAL OF IDENTIFYING
THE SOURCES OF DISTRUST IN
PRECISION MEDICINE RESEARCH AND
WHAT CAN BE DONE WITH MEDICINE
RESEARCH PROGRAMS TO BE TRUST
WORTHY AND THE PERSPECTIVE OF
PEOPLE WITH DISABILITIES.
SO FAR WE CONDUCTED 18 FOCUS
GROUPS AND THE NEXT FEW SLIDES
THAT I'LL BE SHARING ARE SOME OF
THE EXPERIENCES AND CONCERNS
THAT CAME OFF AND THIS IS A
STUDY OF FUNDED BY NIH OD OFFICE
OF DIRECTORS AND SO THE FIRST
THEME THAT CAME UP, VERY
STRONGLY ACROSS FOCUS GROUPS IS
THE CLINICAL SETTINGS AND WE
HEAR A LOT ABOUT THESE DIAGNOSIS
BEING OVERLOOKED AND DOWN UPON
AND DISRESPECTED AND TREATED THE
CLINICAL TEAMS AND THEIR STAFF,
ESPECIALLY WHEN THEY'RE MULTIPLE
MARGINALIZATIONS THAT IS WHEN
YOU HAVE BEING BLIND, AS WELL AS
BEING AFRICAN AMERICAN.
PARTICIPANTS EXPLAINED, THESE
EXPERIENCES INCLUDING CARE
SETTINGS, NEGATIVELY IMPACT
THEIR TRUST IN PRECISION
MEDICINE RESEARCH, EVEN THOUGH
THESE ARE SEPARATE SETTINGS,
BECAUSE TODAY'S PRECISION
MEDICINE RESEARCH IS TOMORROW'S
CLINICAL CARE.
AND THEIR NEGATIVE EXPERIENCES
IN CLINICAL SETTINGS ARE THE PRE
CURSERS ARE EXPERIENCES THEY
WILL LIKELY HAVE IN PRECISION
MEDICINE RESEARCH STUDIES AS
WELL.
AND SECOND THEME IS THE
CONNECTION BETWEEN
DISCRIMINATION AND
INACCESSIBILITY IN EACH AND
EVERY STEP OF THE PRECISION
MEDICINE RESEARCH CYCLE FROM THE
STUDY INFORMATION TO CONSENT
PROCESSES TO STUDY WEB SITES,
STUDY PROCEDURES, RETURN OF
RESULTS, AND OPTIONS.
AS PARTICIPANTS WHICH MAKES IT
HARDER FOR THEM TO PARTICIPATE.
IT'S THEM NOT BEING PROVIDED
ACCOMMODATIONS FOR THE STUDY
PROCEDURES.
THE IMAGE ON THE RIGHT OF THE
SLIDE IS AN PERPS THAT CAME UP
SEVERAL TIMES.
IT'S USED IN COLD AND INCLUDING
OPHTHALMOLOGIST OFFICE AND IT'S
UP WITH OF OUR BLACK AFRICAN
AMERICANS SHARES THE PEOPLE LOOK
AT YOU LIKE -- THEY INSIST I
NEED TO DO IT OR THEY EVEN ASK,
IS THERE SOMEONE OR SORRY,
THERE'S SOMEONE HAS AUDACITY TO
ASK YOU, WELL, DID YOU BRING
SOMEONE WITH YOU.
IT'S IMPOSED INCOMPETENCY THAT
ONLY RAISE FORCES THESE
PERCEPTIONS ABOUT INABILITIES.
IT'S ACCESS TO BENEFITS AND THE
PICTURE ON THIS SLIDE HIGHLIGHTS
A CONDITION FROM REA LOT OF
EXCLUSION TO INCLUSION IT
CONTAINS FIVE BOXES, WITH IMAGES
OF THREE PEOPLE TRYING TO BE
INCLUDED IN A PUBLIC SPACE WITH
THE BOX THIS TITLE FROM LEFT TO
RIGHT, REALITY, EQUALITY,
EQUITY, JUSTICE AND INCLUSION
AND SHOW HOW THESE SITUATIONS
TODAY AND IN THE FUTURE.
THEY LIE HEIGHT THE COST OF
CARE, HIGH POVERTY RATES AND
PEOPLE WITH DISABILITIES MORE
GENERALLY AND ESPECIALLY THOSE
OF MULTIPLE AND THEY TECH
DIVIDES THAT WILL PRECLUDE THEM
FROM ME JOINING THE BENEFITS AND
THEY WILL PAY MUCH HIGHER PRICES
AND CITED PEOPLE FOR ALL ASPECTS
OF PRECISE MEDICINE REOPEN AND
AND THEY NEED TO COVER THE COST
THAT WILL MAKE OTHERWISE
PUBLICLY AVAILABLE SERVICES
ACCESSIBLE TO THEM.
AND WHAT OUR PARTICIPANTS FEARED
IS THAT THEY WILL ALWAYS REMAIN
IN THE FIRST BOX ON THE LEFT OF
REALITY AND INEQUITY, INJUSTICE
AND EXCLUSION FROM ACCESSING THE
BENEFITS OF PRECISION MEDICINE
AND ANOTHER CONCERN WE HAVE, AND
RELATES TO THE BENEFITS OR HOW
WE DEFINE THE BENEFITS IS THE
QUESTION OF STRUCTURAL ABLEISM
IN GENOMICS RESEARCH MORE
GENERALLY AND OF COURSE, IT'S A
DECOMPONENT AND A VERY
FOUNDATIONAL STATEMENT BY JANE
WATSON THE PERSON WHO IDENTIFIED
HAS HAD A HUGE IMPACT ON THE
FIELDS, SEEING THE BRIGHT SIDE
OF BEING HANDICAPPED IS PRAISING
THE EXTREME POVERTY AND TO BE
SURE THERE ARE MANY INDIVIDUALS
WHO RISE OUT OF THE INHER
ENTERED AUTOMATIC THOUGH THERE'S
DIVERSITY WHETHER ONE WANTS
THEIR DISABILITIES TREATED OR
NOT, THIS RESEARCH MAY CLASS
WITH MANY PEOPLE WITH
DISABILITIES AND REFERENCES AND
THE ARTICLE ON THE RIGHT, THE
CLASS AND LOSTS AND ENSUING LOST
IN LASTING AND PEOPLE WITH
DISABILITIES AND AS A GROUP IN
LIFE OF THE GENOMIC RESEARCH AND
AGENDA AND AND IT'S RELEVANT
ACROSS AND THEY ARE IN OUR STUDY
AND WHETHER GENETIC RESEARCH HAS
YOU GENETICS AND THE IMPACTS ON
EXISTING PEOPLE WITH A
DISABILITY.
AND IT'S ONE OF OUR PARTICIPANTS
STATED AND I QUOTE, EVERYONE
WILL NEED TO ACHIEVE A RANDOM
IDEAL BODY TYPE OR A RANDOM
SKILL SET AS PART OF THE
CONCERNS.
AND FINAL ISSUE THAT I WANT TO
BRING UP IS DATA SHARING.
THIS IS A GROWING PRACTICE IN
PRECISION MEDICINE AND RESEARCH
AND OTHER HEALTH RESEARCH --
>>MAYA.
TWO MINUTES.
>>OKAY.
AT ITS CORE, DATA SHARING HAS
IMPORTANT GOALS INCLUDING THE
NEED TO HAVE LARGE DATASETS FOR
SCIENTIFIC FINDINGS TO EMERGE
AND MAXIMUM USE OF FEDERAL
FUNDING AND WE DID FIND SUPPORT
FOR THAT.
FOR DATA SHARING IN OUR SURVEY
BUT WHAT WE ASKED ABOUT WHO THEY
WOULD BE WILLING TO SHARE THEIR
DATA WITH, WHAT WE FOUND IS
SIGNIFICANT RELUCTANCE TO SHARE
THE DATA WITH THE DRUG COMPANIES
AND ESPECIALLY IN BLIND AND LOW
VISION INDIVIDUALS WHERE SHARING
DATA WITH UNIVERSITY RESEARCHERS
AND NIH RESEARCHERS WAS MUCH
HIGHER AND IN DISCUSSING THIS
ISSUE WITH THE COMMUNITY
MEMBERS, WHAT WE FOUND IS THAT
PART OF RELUCTANCE AND WE HAVE
TO DO WITH PHARMACEUTICAL
COMPANIES ARE NOT PROVIDING
ACCESSIBILITY TRAVEL LABELS AND
EFFECTIVELY CONTRIBUTING TO THE
WORSE HEALTH OUTCOME OF BLIND
AND LOW VISION INDIVIDUALS.
SO THERE ARE MANY OTHER THINGS
WE HAVE TO ALLOW DATA SHARING
WITH RESPONSIBILITY SHARING AND
REQUIREMENTS OF THOSE WHO USE
THE DATA, THE SECONDARY USERS TO
ENSURE THEIR DISCRIMINATORY
PRACTICES ARE COMING TO AN END
AND AGAIN, THAT THEY PLAY A ROLE
IN ENSURING HEALTH EQUITY.
AND THEN THAT'S MY LAST SLIDE.
SO WE HEARD A LOT OF ABOUT
DISTRUST AND CHALLENGES THAT IS
ACTUALLY FOCUSING ON INDIVIDUALS
RATHER ON THE SYSTEM AND I THINK
THAT AS WE MOVE ALONG, WE HAVE
TO START THINKING ABOUT JUST
WORTHINESS AND IT'S A CALLING OF
DISABILITY ETHICS, REQUIRING THE
RESEARCH PROGRAMS INCLUDING
PRECISION MEDICINE RESEARCH ARE
JUST WORTHY AS INDIVIDUALS TO
PARTICIPANTS TRUST SHOWING
ABILITY TO ENGAGE AND THE
ABILITY TO ACTUALLY SHOW CARE
AND GOOD INTENTIONS AND SHOW
INTEGRITY AND I PUT HERE SOME
SUGGESTIONS THIS IS A PART OF MY
CURRENT STUDY AND WE'RE STILL
STUDY IT IN GREATER DETAIL BUT
VERY BRIEFLY WE NEED TO FIRST OF
ALL HAVE CLEAR INTEREST AND
COMMITMENT TO INCLUDE PEOPLE
WITH DISABILITIES IN RESEARCH ON
AN EQUAL BASIS AND WE NEED TO
START REPORTING DATA AND WE HAVE
TO START FROM THE PRESUMPTION OF
COMPETENCY AND SURE THEY'RE
SUPPORTED PROCESSES SO WE DO NOT
CONFLATE BETWEEN COM PEN TEE AND
LACK OF SUPPORT BUT UNIVERSAL
DESIGN FROM THE GET-GO SO
EVERYONE CAN PARTICIPATE IN
THOSE STUDIES AND WE HAVE TO
ALSO INCREASE WORKFORCE
DIVERSITY SO THEY INCLUDE PEOPLE
WITH DISABILITIES AS LEADERS OF
STUDIES AND ENGAGE WITH
COMMUNITIES OF PEOPLE WITH
DISABILITIES TO HEAR THEIR VIEWS
AND IDENTIFY THE AREA OF
INTEREST AND SO FOURTH AND THEN
FINALLY WE HAVE TO CREATE
RESEARCH POLICIES AND
ACCOUNTABILITY MEASURES TO
ENSURE THAT WE DISABLE
STRUCTURAL ABLEISTS.
WITH THAT, I JUST WANT TO THANK
THE RESEARCH PARTICIPANTS IN OUR
STUDIES AND COMMUNITY PARTNERS
AND RESEARCH STAFF, AND
COLLABORATIONS ACROSS PROJECTS
ARE FUNDERS, MY HOME DEPARTMENTS
OF COLOMBIA AND ALL THE
INDIVIDUAL EXPERTS WHO HAVE
SHARED WITH ME THEIR IN SIGHT,
KNOWLEDGE AND TIME.
THANK YOU SO MUCH AND I'LL LOOK
FORWARD TO THE CONVERSATION.
>>THANK YOU SO MUCH, MAYA.
WONDERFUL PRESENTATION.
TERRIFIC CONCEPT TO ADDRESS AND
LOOK AT.
I'M GOING TO GO AHEAD AND MOVE
FORWARD IN THE INTEREST OF TIME
TO OUR NEXT SPEAKER, CHARLES
DRUM.
THE DIRECTOR OF THE NATIONAL
CENTER ON RESEARCH, KNOWLEDGE,
TRANSLATION AND DISSEMINATION AT
THE AMERICAN ASSOCIATION ON
HEALTH AND DISABILITY AND WE'LL
TALK BEEN ALL OF THE ALL OF US
PROGRAM.
THANK YOU, CHARLES, WELCOME.
>>THANK YOU FOR THE INVITATION
TO BE HERE AND THIS DYNAMIC AND
IMPORTANT CONFERENCE OVER THE
LAST TWO DAYS.
MY NAME IS CHARLES.
I'M AN AGING, WHITE MALE WITH
GRAYING HAIR ALTHOUGH I STILL
HAVE RETAINED SOME OF THE RED.
I'M IN A BLUE SHIRT WITH A
BLURRED BACKGROUND.
MY PRONOUNS ARE HE/HIM/HISS AND
I HAVE A NON ADVISABLE VISIBLE .
I'LL TALK ABOUT A FEW THINGS OF
THE ALL OF US RESEARCH PROGRAM
THAT MAYA INTRODUCED.
I'M GOING TO DO A BRIEF OVERVIEW
OF THE PROGRAM.
I'M GOING TO TALK ABOUT SOME OF
INNOVATIVE ASPECTS OF THE
PROGRAM, ACCESSIBILITY EXAMPLES,
AREAS NEEDING IMPROVEMENT AND
NEW OPPORTUNITIES FOR IN
CONCLUSION INTO THE PROGRAM.
LIKE MAYA, I WILL START WITH A
DISCLAIMER.
BEFORE I DO THAT, I WANT TO GIVE
PARTICULAR THANKS TO MY
COLLEAGUE, Dr. JACOB DITCH,
FOR HIS REVIEW AND ASSISTANCE IN
COMMENTS ON THIS POWERPOINT
PRESENTATION.
NEXT SLIDE, PLEASE.
SO, IN DEED, HHD IS FUNDED BY
THE NIH ALL OF US RESEARCH
PROGRAM AND I'M THE PRINCIPLE
INVESTIGATOR AND DIRECTOR OF
THAT PROJECT AND THE DISABILITY
COMMUNITY ENGAGEMENT PARTNER
PROJECT.
WHICH IS CONDUCTING OUTREACH AND
ENGAGEMENT WITH THE DISABILITY
COMMUNITY ADULTS, TO ENCOURAGE
THEM TO PARTICIPATE IN THE
PROGRAM.
THE OPINIONS EXPRESSED IN THIS
REPRESENTATION ARE HOWEVER MY
OWN AND DO NOT REFLECT THE
POSITIONS OF AHD OR NIH'S ALL OF
US RESEARCH PROGRAM.
FOR THOSE OF YOU FAMILIAR WITH
MY WORK, YOU MAY KNOW THAT I DO
HAVE SOMETIMES, A DIPLOMATIC
APPROACH TO CRITICISM AND I WILL
BE CRITICIZING THE PROGRAM IN
SOME WAYS.
NEXT SLIDE, PLEASE.
SO, WHAT IS THE ALL OF US
RESEARCH PROGRAM.
IT'S A MASSIVE, HISTORIC,
LONGITUDINAL EFFORT TO GATHER
DATA FROM MORE THAN ONE MILLION
PEOPLE LIVING IN THE UNITED
STATES TO ACCELERATE RESEARCH
AND IMPROVE HEALTH.
BY CONSIDERING INDIVIDUAL
DIFFERENCES, AND LIFESTYLES,
SOCIOECONOMICS AND ENVIRONMENT,
BIOLOGY, AND OTHER FACTORS, THE
PROGRAM EXPECTS THAT RESEARCHERS
WILL UNCOVER PATHS TOWARDS
DELIVERING PERSONALIZED,
INDIVIDUALIZED, MEDICINE AND
HEALTHCARE AND ACHIEVING HEALTH
EQUITY.
THESE ARE LOT ABLE GOALS FOR THE
PROGRAM.
SO, IT'S A GUY NORM US
LONGITUDINAL OBSERVATIONAL
COHORT DATABASE CREATION.
ONE OF THE THINGS THAT I THINK
IS REALLY INNOVATIVE ABOUT THE
PROJECT IS THAT THEY'RE REALLY
WORK TO GO ACHIEVE DIVERSITY AND
SCALE.
THEY'RE FOCUSING ON
DEMOGRAPHICALLY, GEOGRAPHICALLY,
DIVERSITY, AND INCLUDING PERSONS
THAT THEY DESCRIBE IS UNDER
REPRESENTED IN BIOMEDICAL
RESEARCH, UBR.
RACE, ETHNICITY, GENDER, AGE,
SEXUAL ORIENTATION, RURAL
STATUS, SOCIOECONOMICS, AND
IMPORTANTLY FOR OUR WORD,
DISABILITY.
TO DATE, THEY HAVE OVER 600,000
PARTICIPANTS, 80% OF THE
PARTICIPANTS FALL INTO THE UBR
CATEGORY.
15% OF THE PARTICIPANTS ARE
PEOPLE WITH DISABILITIES AND AS
WE HAVE WORKED ON THIS PROJECT
NOW FOR A YEAR AND THREE
QUARTERS, WE'RE REALLY TRYING TO
INCREASE THE PREPORTION OF
PEOPLE WITH DISABILITIES THAT
ARE PARTICIPANTS.
IT'S A HUGE DIVERSE RANGE OF
DATA THAT IS AVAILABLE.
THEY HAVE A NUMBER OF SOCIAL
SCIENCE SURVEYS AND AS A SOCIAL
SCIENTIST, I RESINATE TOWARDS
THAT.
IT INCLUDES SURVEYS ON
LIFESTYLES, OVER ALL HEALTH,
HEALTHCARE ACCESS AND
UTILIZATION, PERSONALIZED
MEDICAL HISTORY, FAMILY HEALTH
HISTORY, TWO DIFFERENT COVID
FOCUSED SURVEYS, SOCIAL
DETERMINANTS OF HEALTH AND THEY
TAKE PHYSICAL MEASUREMENTS AND
THEY PROVIDE WEARABLES TO SOME
FOLKS AND YOU CAN SIGN UP TO
PROVIDE SAMPLES.
IT'S THE LARGEST GENETIC DATASET
IN THE ENTIRE WORLD WITH OVER
450,000 PEOPLE THAT HAVE
PROVIDED BIO SAMPLES FOR GENETIC
ANALYSIS.
AND THEY'RE EXPANDING.
THEY'RE LOOKING FOR NEW SURVEYS
AND THEY RESURVEY PARTICIPANTS
WHO HAD NOT HAD AN OPPORTUNITY
TO COMPLETE TOES SURVEYS.
NEXT SLIDE, PLEASE.
THE GOAL IS TO HAVE THIS GUY
NORM US DATABASE RESEARCHER WORK
BENCH, THAT IS A NATIONAL
RESOURCE FOR ALL.
THEY HAVE TALKED ABOUT CITIZENRY
SEARCHERS AND A DASHBOARD THAT
THEY HAVE CREATED AND ARE
CONSISTENTLY UPDATING.
THERE'S A LOT OF PARTICIPANT
CHOICE.
YOU CAN TAKE ONE SURVEY OR ALL.
YOU CAN TAKE PROVIDE ELECTRONIC
HEALTH RECORDS OR NONE.
YOU CAN PROVIDE BIO SAMPLES OR
NOT AT ALL.
YOU CAN CHOSE TO GET THE DATA
INFORMATION BACK TO YOU OR YOU
CAN AVOID THAT.
IF IF YOU PROVIDE BIO SAMPLES
AND THERE ARE CONCERNING
RESULTS, THEY HAVE A GENETIC
COUNSELING PROGRAM WHERE THEY
CAN COUNCIL PARTICIPANTS.
THEY REALLY DO FOCUS ON
PARTICIPANTS AS PARTNERS,
THEY'RE INCLUDED IN THE
GOVERNANCE, PARTICIPATORY ACTION
RESEARCH OR COMMUNITY BASED
RESEARCH IS ENCOURAGED AND
THERE'S MECHANISMS FOR
PARTICIPANTS TO IDENTIFY OF
AREAS WHERE THERE SHOULD BE
RESEARCH STUDIES GOING ON.
THEY A WORKGROUP AND THE
CERTAINLY IMPLICATIMPLICATIONS.
THIS IS TAKING ON THESE TOUGH
QUESTIONS MADE UP OF GRANTEES,
AWARDEES TO EXAMINE THESE ISSUES
FOR THE PROGRAM.
NEXT SLIDE, PLEASE.
SO, HERE IS SOME OF THE REASONS
FROM A DISABILITY PERSPECTIVE
THAT I ENDORSE THE ALL OF US
RESEARCH PROGRAM.
IT'S THE PERSONALIZED MEDICINE
INDIVIDUALIZED HEALTHCARE FIRST
AND FOR MOST AS CONFERENCE HAS
DEMONSTRATED, MEDICAL CARE IF
YOU HAVE A DISABILITY IS NOT
SUFFICIENT.
THEY ALSO HAVE A GOAL OF
FOCUSING ON HEALTH EQUITY AND
THIS RESINATES TO ME AS A
DISABILITY RESEARCHER.
THEY HAVE A UNIQUE COMBINATION
OF DATA AND I'VE WORKED WITH THE
BEHAVIORAL RISK FACTOR
SURVEILLANCE SYSTEM, MATS AND
NHIS AND OTHER SECONDARY DATA
SOURCES.
HERE YOU HAVE GENETIC DATA,
CLINICAL DATA AND SOCIAL SCIENCE
SURVEYS ALL BROUGHT TOGETHER.
THEY USE THE DISABILITY
IDENTIFIERS THAT ARE CONTAINED
IN THE AMERICAN COMMUNITY SURVEY
AND SO IT DOES ALLOW COMPARISONS
WITH POPULATION BASED SURVEYS.
THE PROGRAM MADE THE CHOICE TO
FUND A NUMBER OF NATIONAL AND
ENGAGEMENT PARTNERS TO PROVIDE
THAT PERSPECTIVE BOTH IN TERMS
OF RECRUITMENT AND ENGAGEMENT
AND ALSO WITH THE OPERATIONS OF
THE PROGRAMS ITSELF AND AS A
RESEARCHER ADVOCATE, THEY DO
HEAR FROM US.
WE BRING THE VOICE OF MANY
DIFFERENT DISABILITY GROUPS INTO
OUR WORKS.
SO WE HAVE 25 NATIONAL AND LOCAL
DISABILITIES ORGANIZATIONS THAT
ARE PART OF THAT CONSORTIUM.
THEY INCLUDE ORGANIZATIONS LIKE
NICKEL AND APRIL AND AUCD AND
CFP AND THE SPINA BIFIDA
ASSOCIATION AND MANY OTHERS.
INCLUDING LOCAL CENTERS FOR
INDEPENDENT LIVING.
PART OF WHAT WE DID IN THE FIRST
YEAR OF THE PROJECT IS WE
CREATED AN ENDORSEMENT AND
INCLUSION STATEMENT THAT WAS
ADOPTED BY OUR FULL DISABILITY
CONSORTIUM.
THIS IS AN APPROVED
COMMUNICATION ASSET BY NIH
COMMUNICATION OFFICE AND IRB.
THEY LET US CRITICIZE THE
PROGRAM IN THIS STATEMENT, LET
ME BE CLEAR, WE LET THE WORK
THEY'VE DONE TO MAKE THE PROGRAM
ACCESSIBLE BUT WE ALSO POINT OUT
THAT THEY NEED TO ADOPT MAKE
SURE THE RESEARCH INCLUDES ALL
PEOPLE WITH DISABILITIES
INCLUDING PEOPLE WHO CANNOT
CONSENT ON THEIR OWN.
NEXT SLIDE, PLEASE.
HERE IS THE ACCESSIBLE AND IT'S
DONE AND THEY ARE 508 ACCESSIBLE
AND THEY FOCUS ON MEETING A
SIXTH GRADE READING LEVEL OR
LOWER.
SO SOME BUT NOT ALL OF THE
RECRUITMENT MATERIALS INCLUDE
DISABILITY IMAGES.
SOME OF THE RECRUITMENT
MATERIALS INCLUDE SPECIFIC
TESTIMONY ALS FROM PEOPLE WITH
DISABILITIES AS TO WHY THEY
SIGNED UP TO BE PARTICIPANTS.
THE ALL OF US LANDING PAGE
INCLUDES PHONE, E-MAIL AND
ON-LINE CHAT OPTIONS, FROM THAT
MAIN WEB PAGE FROM 7:00 A.M. TO
10:00 P.M. EASTERN STANDARD
TIME.
THE ALL OF US LAPPI LANDING HAS
TOLL-FREE TTY TELE
COMMUNICATIONS RELAY SERVICES
THAT ARE AVAILABLE.
NEXT SLIDE, PLEASE.
SO THEY HAVE OUTREACH AND
ENGAGEMENT MATERIALS,
RECRUITMENT MATERIALS AND THEN
THEY HAVE ENROLLMENT MATERIALS.
THESE MATERIALS MEET 508
REQUIREMENTS AND ARE AT THE
SIXTH GRADE READING LEVEL OR
LOWER.
THEY PROVIDE SUPPORT ON THE
ENROLLMENT HOME PAGE VIA CHATBOX
TO ANSWER QUESTIONS IF PEOPLE
HAVE THEM.
AND ENROLLMENT CAN BE DONE
REMOTELY THROUGH A WESTBOUND
BROWSER OR A MOBILE APP THAT IS
SCREEN READER COMPATIBLE.
THEY ALSO PROVIDE IN-PERSON
ENROLLMENT OPPORTUNITIES AS A
NETWORK OF HEALTH PROVIDERS
ORGANIZATIONS SUCH AS HOSPITALS
AND CLINICS, WHERE ONE CAN GO
AND ENROLL IN THE PROGRAM AND
PROVIDE BIO SAMPLES.
THEY HAVE SEVERAL ALL OF US
JOURNEY BUSES THAT DOES
EDUCATION AND ENROLLMENT AND ARE
GOING ACROSS THE NATION MU OFTEO
RURAL AREAS TO PROVIDE EDUCATION
AND ENROLLMENT AND THEY SUPPORT
POP-UP CLINICS.
THEY'RE IN ACCESSIBILITY IN ACC.
FROM THE PARTICIPANT
PERSPECTIVE, I REALLY VALUE AND
THINK IT'S IMPORTANT THAT THE
SURVEYS ARE AT SIXTH GRADE LEVEL
OR LOWER.
I HAVE BEEN BLESS BLESS BLESSEDO
ACCESS TO EDUCATION SO IT'S
IMPORTANT GIVEN THE COMPLEXITY
OF SOME OF THESE QUESTIONS THAT
THE SURVEY ITEMS THEMSELVES ARE
AT SIXTH GRADE LEVEL OR LOWER.
THEY HAVE SALIVA KITS FOR FOLKS
WHO FIND IT DIFFICULT TO LEAVE
THEIR HOME OR TRANSPORTATION
ISN'T AVAILABLE.
THEY CAN GET THROUGH THE MAIL
AND RETURN TO THE PROGRAM.
I THINK IT'S IMPORTANT THEY
LISTEN AND ADD NEW.
IT'S NOT AROUND THE NEW SURVEYS.
FROM A PARTICIPANT PERSPECTIVE
IT'S REALLY IMPORTANT AND
UNDERSTAND AN ELAN ELEMENTOF EMM
MAINTAINS A WEBSITE OF ALL THE
DIFFERENT RESEARCH PROJECTS THAT
ARE GOING ON.
PARTICIPANTS OR OTHER
RESEARCHERS CAN INITIATE A
REVIEW OF WHAT THAT PERSON FEELS
LIKE THE STIGMATIZING RESEARCH
PROJECTS AND IT'S DONE BY A
RESEARCH ACCESS BOARD AND THAT
BOARD TAKES A RANDOM SAMPLE OF
PROJECTS ANNUALLY AS WELL TO
REVIEW TO SEE IF THERE'S
STIGMATIZING RESEARCH GOING ON.
THAT IS A POWERFUL CHOICE.
IT'S NOT PERFECT.
PEOPLE ARE WAITING FOR THE
IMPLIED CRITICISM OR THE DIRECT
CRITICISM.
AND I'M HAPPY TO GIVE THAT
BECAUSE IT HELPS IMPROVE THE
PROGRAMS.
SO, WHILE MOST OF THE
RECRUITMENT MATERIALS ARE 508
COMPLIANCE, THEY ALL HAVE TO BE
508 COMPLIANT.
THE DISABILITY ARE LIMITED TO
MOBILITY AND OTHER VISIBLE
DISABILITIES AND THEY LACK IN MY
OPINION, KIND OF
INTERSECTIONALITY BETWEEN RACE,
ETHNICITY, AND DISABILITY.
THE LANDING PAGES AND SOME OF
THE FRONT PAGES OF THE AOU WEB
SITES ARE 508 COMPLIANT.
LIKE MANY WEB SITES, WHEN YOU
START DRILLING DEEPER THERE'S
PROBLEMS WITH 508 COMPLIANCE AND
MEETING THOSE STANDA STANDARDS S
TOUGH BUT IT NEEDS TO BE MET.
THE FOCUS ON INTERSECTIONALITY
THAT WE HAVE AROUND DISABILITY
RACE AND ETHNICITY, IS REALLY
UNDER CUT BY THE FACT THAT THE
SURVEYS ARE OFFERED AND THE
MATERIALS ARE OFFERED IN ENGLISH
AND SPANISH AND THAT IS AN AREA
WHERE THEY NEED TO DO MORE WORK
AND OFFER THEM IN OTHER
LANGUAGES.
AND THEY DON'T ALWAYS FOLLOW
BEST PRACTICES OF HAVING THEIR
PROGRAMS LED OF PRESENTATIONS
AND CONFERENCES AND THE INTERNAL
MEETINGS AND HAVING ASL
INTERPRETERS AND CART BEING
OFFERED.
WHILE THE JOURNEY BUSES ARE
ACCESSIBLE, WE HAVE MONITORED
THEM TO MAKE SURE THAT THERE'S A
RAMP AT THE BACK OF THE BUS,
THEY DON'T PARK THE BUS WITH A
HAM NOT HOLE BEHIND IT SO THAT
IS AN AREA THAT NEEDS TO BE
MONITORED.
THERE'S AN EFFORT TO ADDRESS
THESE AND I THINK AHD WAS PRIOR
TO A YEAR AND THREE QUARTERS AGO
WAS A SUB AWARD' AND IT DIDN'T
HAVE THE INFLUENCE IT HAS NOW
AND SO WE'RE SPONSORING A PHOTO
SHOOT THAT WILL PROVIDE A BROAD
ARRAY OF DISABILITY IMAGES BEING
REPRESENTED.
WE HAVE A REMEDIATION SPECIALIST
SO WE'LL DO A LOT TAGS SO IF THE
PERSON LIKE MYSELF, HAS A NON
ADVISABLE DISABILITY, THEY'LL BE
AN ALT TAG TO INDICATE WHAT THAT
IS.
PEDIATRIC ENROLLMENT IS UNDER
DEVELOPMENT.
AND THEY HAVE SPECIFICALLY
DECIDED TO INCLUDE CHILDREN WITH
DISABILITIES.
KIDS WITH IDD OR OTHER KINDS OF
DISABILITIES ARE NOT GOING TO BE
EXCLUDED FROM THE PEDIATRIC
RESEARCH THAT IS GOING ON AND
WE'VE BEEN WORKING CLOSELY WITH
THE NEW DIRECTOR OF PEDIATRICS.
HAVING DISCUSSIONS ABOUT OPTIONS
FOR HOW YOU DEFINE DISABILITY
AND MECHANISMS FOR INSURING KIDS
WITH DISABILITIES AND THEIR
PARENTS HAVE AN OPPORTUNITY TO
ENROLL.
THEY'RE TALKING ABOUT DOING HOME
VISITS WHICH IS KIND OF MIND
BOGGLING BUT MAY HAVE REALLY
HELPED A NUMBER OF PEOPLE WITH
DISABILITIES THAT FIND IT
DIFFICULT TO GET OUT OF HOME OR
HAVE TRANSPORTATION ISSUES.
IT'S BEEN A DISABILITY SURVEY
THAT WAS -- WE GAVE COMMENTS ON
SEVERAL YEARS AGO.
IT'S NOW BEING REVISITED TO SEE
IF THAT CAN'T BE TWEAKED.
SO WHAT I WANT TO SAY ABOUT THE
PROGRAM IS IF YOU ARE OKAY WITH
A LONGITUDINAL OBSERVATIONAL
COHORT, IT'S A GREAT OPPORTUNITY
TO DO RESEARCH THAT IS FOCUSED
ON HEALTH EQUITY AND VICE I'D
THE HEALTHCARE PRECISION
MEDICINE.
THE RESEARCHER WORK BENCH IS
ACCESSIBLE AND IT'S 508
COMPLIANT SO IF YOU HAVE LOW
VISION OR ARE BLIND, THERE'S
OPPORTUNITIES TO DO RESEARCH.
ONE OF THE THINGS THAT WE'VE
JUST STARTED DOING RECENTLY, IS
CO-SPONSORING A WEBINAR ON THE
RESEARCHER WORK BENCH ITSELF.
IN OLE CAB RACE WITH FOLKS FROM
VANDERBILT UNIVERSITY.
IF APPROXIMATE YOU ARE
INTERESTED IN THAT SORT OF
THING, YOU CAN E-MAIL ME.
AND I LOOK FORWARD TO ANSWERING
ANY OF THE QUESTIONS THAT HAVE
COME UP ABOUT THE PARTICULAR
PROGRAM.
THANK YOU.
>>YOU ARE ON MUTE, KATHY.
>>SORRY.
THANK YOU VERY MUCH CHARLES FOR
YOUR PRESENTATION.
I WANT TO REMIND EVERYBODY THAT
QUESTIONS AND ANSWERS WILL ONLY
BE ADDRESSED IF THEY'RE IN THE
Q&A.
THE ABILITY TO REACH OUT TO --
TO RESPOND TO YOUR QUESTIONS IS
CHALLENGED IF YOU ARE NOT
PUTTING THEM IN THE Q&A SECTION
SO THANK YOU VERY MUCH FOR
EVERYBODY TO FOR O'BONSAWIN
THAT.
I GUESS I WILL START BY ASKING A
COUPLE QUESTIONS.
ONE IS, CHARLES, IS THERE ALL
THE OF US IS NOT ACCESSIBLE TO
PEOPLE WHO RECOGNIZE TO SPEECH
RECOGNITION AND DETECTION
SOFTWARE.
ARE THERE PLANS TO ADDRESS THAT
AND SECONDARILY, THE MORE
GENERIC QUESTION OF ENGAGING THE
COMMUNITY, NOT ONLY BEFORE BUT
AFTER IS PROBABLY A CHALLENGE
FOR ALL OF US.
IN THAT THE COMMUNITY IS ACROSS
THE COUNTRY, EVERYWHERE.
SO, HOW DO YOU ENSURE THE
PARTICIPANTS THAT YOU HEAR THEM
QUITE LITERALLY AS IN VOICE
RECOGNITION SOFTWARE, BUT ALSO,
THAT YOU HEAR THEM THAT WE WANT
DIRECT -- OR THAT PARTICIPANTS
WANT TO SEE THAT THEY AND THEIR
COMMUNITY GOING BACK TO THE
ISSUE OF TAILORED MEDICINE,
INDIVIDUALIZED MATERIAL ORDER
MEDICINE, HOW DOES THE COMMUNITY
BENEFIT FROM PARTICIPATING?
>>THERE'S SEVERAL DIFFERENT
WAYS TO ANSWER THAT PARTICULAR
QUESTION.
LET BE ME CLEAR AND IF I WANT AT
THE OUTSET THE PROGRAM IS NOT
PERFECT.
AFTER 30 YEARS WORKING IN
DISABILITY RESEARCH FIELD IN MY
OWN OPINION, IT'S THE PROGRAM
AND AFTER FUNDING FROM CDC AND
NIH AND DOE AND ACL I SEE MORE
COMMITMENT TO ACCESSIBILITY THAN
ANY OTHER PROGRAM OVER THE
YEARS.
WE SERVE AS A VOICE.
I HAVE NOT HEARD FROM THE
DISABILITY COMMUNITY ABOUT THE
DRAG ON OF BARRIER.
WE WILL WELCOME, I WELCOME, ANY
PERSON WITH A DISABILITY, ANY
DISABILITY RESEARCH ANY
RESEARCHER WHO KNOWS OF
DEFICIENCIES IN THE PROGRAM TO
BRING IT TO OUR ATTENTION
BECAUSE THAT'S PART OF OUR JOB
IS TO BRING IT UP WITH THEM AND
TO PUSH THEM.
NOW WITHIN OUR OWN PROGRAMS
WHERE WE HAVE A REMEDIATION
SPECIALIST, AND SO WE WORK ON
THESE ACCESSIBILITY ISSUES, THE
PROGRAM HAS WAY MORE RESOURCES
THAN WE DO SO WE HAVE TO BE A
CONDUIT TO PUSH ON THESE KINDS
OF ISSUES AND I'M HAPPY DOING
THAT AND I'M HAPPIER WHEN WE SEE
RESULTS OF THESE KINDS OF ISSUES
AND CONCERNS.
YOU KNOW, WE FORMED THIS
DISABILITY CONSORTIUM SO WE
COULD HAVE A BROAD EFFECT SO WE
TAKE A POINT OR PROJECT AND
PROGRAM AND MIDDLE, ALL OF THE
DISABILITIES ORGANIZATIONS AND
NATIONAL AND LOCAL AND MASS OR
THE TARGET AUDIENCE SO WE USE OR
PARTNERS TO GET THE WORD OUT TO
THE BROADER DISABILITY
COMMUNITY.
WE KNOW, HOWEVER, A LOT OF FOLKS
WITH DISABILITIES DON'T THINK OF
THEMSELVES AS HAVING A
DISABILITY AND AREN'T PART OF
FORMAL DISABILITY ORGANIZATIONS,
WE TRIED TO THINK OF WAYS TO
REACH THAT POPULATION.
IF WE HAD $30 MILLION A YEAR WE
MIGHT BE MORE SUCCESSFUL AT IT
SO WE'RE PLANNING FOR YEAR THREE
AND WE ARE GOING TO FOCUS ON
EXPANDING OUR REACH TO
DISABILITY ORGANIZATIONS KNOWING
THERE'S LIMITATIONS AND HOW MANY
FOLKS THAT WE CAN REACH.
THE LAST THING I'LL SAY IS THAT
THIS IS APP OPPORTUNITY FOR
RESEARCHERS TO SIGN UP AND
UTILIZE THIS DATA.
THIS IS WHERE THE DISABILITY
COMMUNITY NEEDS TO WORK WITH THE
RESEARCHERS AND DISABILITY
RESEARCHERS LIKE MYSELF, NEED TO
BE FULLY COMMITTED TO
PARTICIPATORY ACTION RESEARCH,
YEAH, YOU'VE GOT SOME GREAT
DATA, YOU NEED TO UNDERSTAND
WHAT YOUR RESEARCHING AND
EMPHASIZE WHAT YOU WANT OUT OF
IT.
AND I THINK WE'VE PRETTY MUCH
DOCUMENTED THAT HEALTH
DISPARITIES EXIST.
WE NEED RESEARCH THAT COMES UP
WITH PRAB ATTIC AND POLICY
INTERVENTIONS TO STARTS THEM AND
I'LL STOP THERE.
VERY QUICKLY, I'LL ASK ONE OF
THE OTHER QUESTIONS HERE, THAT
IS, HOW DOES SOMEONE WHO IS OR
WANTS TO BE A PARTICIPANT IN ALL
OF US, IDENTIFY THE CONCERNS
THAT ARE KEEPING THEM FROM
PARTICIPATING?
>>PART OF WHAT WE EMPHASIZE
WHEN WE MEET WITH FOLKS WITH
DISABILITIES, AND WE DO
PRESENTATIONS OR WEBINARS OR THE
INFORMATION WE'RE SENDING OUT IS
WE GET AHEAD OF THINGS, RIGHT.
DATA SECURITY IS A BIG ISSUE.
BECAUSE OF THE HISTORICAL
TREATMENT OF PEOPLE WITH
DISABILITIES AND THE POOR
TREATMENT.
SO WHAT WE DO IS TRY TO CAPTURE
AND DESCRIBE THE EXTENSIVE
EFFORTS THAT THE PROGRAM
SUBPOENA MADE O KEEP THE DATA
SECURE AND MAKE SURE THERE ARE
NOT DATA BREACHES SO THAT'S PART
OF WHAT WE DO.
WHEN WE DO PRESENTATIONS, SAY
WE'RE WORKING WITH A LOCAL
INTEREST FOR INDEPENDENT LIVING
AND WE'RE AT A MEETING THERE
VIRTUALLY, WE WANT PEOPLE TO
RAISE THESE ISSUES AND CONCERNS.
IF THEY KNOW THERE'S A LOCAL
HEALTH PROVIDER ORGANIZATION,
THAT'S PART OF THE NETWORK, AND
THEY KNOW THAT IT'S
INACCESSIBLE, WE WANT TO HEAR
THAT BECAUSE PART OF OUR JOB IS
NOT JUST PROVIDING INFORMATION
ABOUT THE PROGRAMS, BUT IT'S
RAISING THESE ISSUES
DIRECTIONALLY WITH THE PROGRAM
SO I HOPE THAT ANSWERS YOUR
QUESTIONS.
>>SO WE NEED TO MOVE ON.
THERE ARE A LOT OF OTHER
QUESTIONS AND I'M SORRY THAT
WE'RE NOT GOING TO BE ABLE TO
GET TO ALL OF THEM TODAY DURING
THE MEETING.
I WANT TO REMIND PEOPLE WE WILL
MAKE EVERY EFFORT TO REACH BACK
TO QUESTIONERS AND PROVIDE
ANSWERS.
PLEASE STICK WITH US.
DON'T BE AFRAID TO PUT YOUR
QUESTIONS, POSITIVE OR NEGATIVE
INTO THE Q&A AND WE'LL ADDRESS
THEM.
AS BEST WE'RE ABLE TO.
OUR NEXT PRESENTER Ms. EVE
HILL, IT WILL BE DISCUSSING
LEGAL PROTECTIONS AND
OPPORTUNITIES EVE HILL IS A
PARTNER AT BROWN GOLDSTEIN AND
LEVEE AND FOUNDER OF THE
INCLUSIVITY STRATEGIC
CONSULTING.
EVE HAS DECADES OF EXPERIENCE
IMPLEMENTING THE AMERICANS WITH
DISABILITIES AGENT AND ZOO
DISABILITIES RIDES LAWS THROUGH
CONSULTATION, TRAINING, GUIDANCE
AND ENFORCEMENT.
SHE'S A SENIOR FEDERAL
GOVERNMENT OFFICIAL AT THE
DEPARTMENT OF JUSTICE CIVIL
RIGHTS DIVISION, AS A DIRECTOR
OF DISTRICT OF COLOMBIA OFFICE
OF DISABILITIES RIGHTS AND AT
THE BURTON BLAT INSTITUTE IN AK
A DEEMIA NON-PROFIT SECTOR.
SHE HAS EXPERIENCE HELPING
ENTITIES GO BEYOND COMPLIANCE
WITH DIS ACT AS PART OF THEIR
DIVERSITY AND EQUITY AND
INCLUSION EFFORTS ALL AROUND.
THANK YOU, EVE.
TAKE IT AWAY.
>>THANK YOU.
I WANT TO DO A VISUAL
DESCRIPTION OF MYSELF.
A I'M A WHITE WOMAN WITH
REDDISH-BROWN HAIR AND FRECKLES.
I'M SITTING IN FRONT OF A SCREEN
THAT HAS SOME FLOWERS ON IT.
I'M WEARING A BLACK AND WHITE
JACKET.
I HAVE A HIDDEN DISABILITY AND
I'M SHE/HER/HERS.
I AM THE MOST BORING SLIDES IN
THE WORLD.
THIS IS A LOVELY SUNSET COLORED
SLIDE THAT AS ABLEISM IN
MEDICINE AND SCIENTIFIC RESEARCH
AND LEGAL TOOLS AND TECHNIQUES
AND I WANT TO THANK THE
ORGANIZERS OF THIS REALLY
IMPORTANT CONFERENCE AND
CONVERSATION.
SOCIETY HAS IGNORED DISABILITY
IN THE FIELDS OF MEDICINE AND
CLINICAL RESEARCH FOR SO LONG
AND THIS CONVERSATION REALLY
BEGINS TO CHANGE THAT AND BRING
THE ISSUE INTO THE LIGHT AND I'M
REALLY HAPPY TO HAVE BEEN
INVITED TO BE A PART OF IT EVEN
THOUGH I'M NOT A DOCTOR OR PH.D,
I'M JUST A LAWYER.
WAY HEAVED ABOUT THE PREVALENCE
OF ABLEISM IN THE FIELDS OF
MEDICINE AND CLINICAL RESEARCH
AND THE TREMENDOUS NEGATIVE
EFFECTS OF SUCH ABLEISM ON
PEOPLE WITH DISABILITIES AND ON
THE QUALITY OF HEALTHCARE, AND
ON THE QUALITY OF CLINICAL
RESEARCH AND THIS SLIDE HAS JUST
A PICTURE OF A SET OF VIALS FOR
MEDICINE MEDICAL TESTING.
WE'RE DEALING WITH PHYSICIANS
WITH ABLEIST BELIEVES ABOUT THE
LIVES OF PEOPLE WITH DISABILITY
AND PHYSICIAN WHO'S ARE HESITANT
TO TREAT PEOPLE WITH DISABILITY
AND WE KNOW PEOPLE WITH
DISABILITIES ARE UNABLE TO
ACCESS HEALTHCARE SERVICE AND
UNDER REPRESENTED IN MEDICINE
AND RESEARCH.
THEY ARE UNDER REPRESENTED IN
THE STEM ACADEMIC PATHWAY
DROPPING LOWER AT EVERY STAGE IN
THAT PATHWAY.
I'LL TALK ABOUT HOW WE CAN USE
THE LAW TO DO SOMETHING ABOUT
IT.
THIS SLIDE IS LABELED THE
PROBLEM AND HAS A BLACKBOARD
FULL OF COMPLICATED MATHY
INDICATIONS ON IT.
WE SEE ABLEISM IN EVERY ASPECT
OF MEDICINE AND CLINICAL
RESEARCH FROM RECRUITMENT AND
ACCOMMODATIONS TO ATTITUDES
TOWARDS DOCTORS AND NURSE AND
RESEARCHERS TO INCLUSION OR
EXCLUSION AND DISABILITIES
RELATED SUBJECTS AND RESEARCH
AND PATIENTS TO EXCLUSION OF
PEOPLE WITH DISABILITY 0
CLINICAL TRIALS.
THIS SLIDE IS LABELED THE LAW
AND HAS A PICTURE OF A SCALES OF
JUSTICE AND THAT THIS WILL BE
THE IMAGE ON THE NEXT I'M A
LITTLE RIGHTS LAWYER SO PROHIBIT
ON THE LABEL OF DISABILITY SO
YOU MIGHT THINK THAT LAWS ARE
NOT THAT IMPORTANT BECAUSE THEY
DON'T CHANGEABLIST STUDENTS AND
THE REAL GOAL OF THESE LAWS IS
NOT JUST TO CHANGE THE BEHAVIOR
TOWARDS A PARTICULAR PERSON OR
GROUP WITH DISABILITIES WHICH
THEY DO DO IN EACH CASE, BUT TO
LEAD TO GREATER I AM CONCLUSION
OF PEOPLE WITH DISABILITIES AND
ALL ASPECTS OF OUR SOCIETY.
BECAUSE WHEN WE WORK AND STUDY
AND PLAY AND INTERACT WITH
PEOPLE WITH DISABILITIES, OUR
ATTITUDES AS A SOCIETY AND OUR
ABLEISM ARE REDUCED.
SO FOR EXAMPLE, THE AMERICANS
WITH DISABILITIES ACT, WHICH
I'VE BEEN ENFORCEMENT FOR ALMOST
THE ENTIRE TIME IT'S BEEN IN
EFFECT, HAS HAD THAT AFFECT.
WHEN I STARTED DOING THIS WORK,
MANY PEOPLE I TRAINED WOULD SAY
THEY DIDN'T KNOW ANYONE WITH A
DISABILITY.
NOW, VERY FEW PEOPLE CAN SAY
THAT.
BECAUSE THE ADA HAS CLEARED
PATHWPATHWAYS TO ALLOW PEOPLE OF
INSTITUTIONS AND OUT OF THEIR
HOMES INTO THE WORLD INTERACTING
WITH PEOPLE WITH DISABILITIES
REGULARLY AND I BELIEVE THAT
INTERACTION, IS WHAT CHANGES
ATTITUDES.
NEXT SLIDE.
LETLET'S TALK ABOUT THEADA.
DISCRIMINATION AND EMPLOYMENT
AND TITLE TWO DISCRIMINATION BY
STATE AND LOCAL GOVERNMENT
INCLUDING PUBLIC COLLEGES AND
UNIVERSITIES, PUBLIC RESEARCH
INSTITUTIONS AND SOCIAL SERVICE
PROVIDERS AND PUBLIC HOSPITALS
AND OTHER MEDICAL FACILITIES.
AND TITLE THREE, PROHIBITS
DISCRIMINATION BY PUBLIC
ACCOMMODATIONS, THAT'S 12
CATEGORIES OF BUSINESSES, WHICH
INCLUDES PRIVATE COLLEGES AND
UNIVERSITIES, PRIVATE SOCIAL
SERVICE PROVIDERS AND PRIVATE
MEDICAL PROVIDERS AND HOSPITALS.
SO TITLE 1, IS IMPORTANT HERE
BECAUSE IT HELPS TO ADDRESS THE
TRADITIONAL EXCLUSION OF PEOPLE
WITH DISABILITIES FROM THE RANKS
OF MEDICAL PROFESSIONALS AND
RESEARCHERS.
AND UNTIL PEOPLE WITH
DISABILITIES ARE EXCLUDED IN
CONCLUDED IN THOSE RANKS, WE
DON'T MAKE THE KIND OF PROGRESS
GETTING RID OF ABLEISM THAT WE
NEED TO BE ABLE TO MAKE.
TITLE ONE SAYS THAT RESEARCH
INSTITUTIONS, UNIVERSITIES AND
MEDICAL PRACTICES THAT HIRE
PROFESSIONALS AND RESEARCHERS,
CAN'T EXCLUDE PEOPLE WITH
DISABILITIES FROM THEIR RANKS.
AND CAN'T IMPOSE QUALIFICATION
STANDARDS THAT TEND TO EXCLUDE
PEOPLE WITH DISABILITIES AND THE
ONLY WAY THEY CAN IMPOSE
QUALIFICATION STANDARDS THAT
TEND TO EXCLUDE PEOPLE WITH
DISABILITIES WITH THOSE ARE VERY
CLEARLY JOB RELATED AND
NECESSARY FOR THE JOB.
SO, FOR EXAMPLE, A HOSPITAL
CAN'T REFUSE TO HIRE A NURSE,
BECAUSE HE HAS A SEIZURE
DISORDER AND DOESN'T HAVE A
DRIVER'S LICENSE.
WHEN DRIVING ISN'T AN ESSENTIAL
FUNCTION OF THE JOB.
EVEN WHEN IT'S A TRAVELING NURSE
POSITION, IF IF THE PERSON CAN
GET AROUND OTHER WAYS THAN
DRIVING, SUCH AS RIDE SHARES OR
TAXIS OR PUBLIC TRANSPORTATION,
THE HOSPITAL STILL CAN'T USE A
DRIVER'S LICENSE AS A CALL
CARRYING THEY'RE THINKING ABOUT
IT IN ONE WAY THAT YOU
ACCOMPLISHED THE TASK IN ONE WAY
WHEN IN FACT, PEOPLE ACCOMPLISH
THE SAME TASK IN DIFFERENT WAYS
SO YOU HAVE TO BE CAREFUL ABOUT
YOUR QUALIFICATIONS STANDARDS
WHEN HIRING.
EMPLOYERS MUST ACCOMMODATE THOSE
WITH DIS ACTS SO A REASONABLE
ACCOMMODATION CAN BE ANY CHANGE
THAT IS NECESSARY FOR THE PERSON
WITH A DISABILITY TO BE ABLE TO
PERFORM THE ESSENTIAL FUNCTIONS
OF THE JOB.
IT CAN'T BE AN UNDUE HARDSHIP
FOR THE EMPLOYER.
SO FOR EXAMPLE, A CLINICAL
RESEARCH FACILITY HAS TO ALLOW
AN EMPLOYEE WITH A VISION
IMPAIRMENT TO BRING THEIR
SERVICE ANIMAL TO WORK UNLESS
THERE'S A REASON THE ANIMAL
WOULD INTERFERE WITH THE
RESEARCH BEING DONE.
IT'S ENFORCEABLE BY THE PERSON
EXPERIENCE DISCRIMINATION AND
THE EQUAL EMPLOYMENT OPPORTUNITY
COMMISSION.
THE REMEDY FOR VIOLATIONS OF
TITLE 1 INCLUDE DAMAGES, BACK
PAY AND FRONT PAY, GETTING YOUR
ATTORNEYS FEES REIMBURSED AND
INJUNK TIVE RELIEF MAKING THE
EMPLOYER DO THE RIGHT THING.
NOW TITLE 2 IS IMPORTANT BECAUSE
IT GOVERNS HOW STATE AND LOCAL
MEDICAL AND RESEARCH FACILITIES
INTERACT WITH NON EMPLOYEES WITH
DISABILITIES SUCH AS PATIENTS
AND RESEARCH AND OTHERS AND
TITLE THREE, IMPOSES THE SAME
OBLIGATIONS ON PRIVATE MEDICAL
AND RESEARCH FACILITIES THAT ARE
OPEN TO THE PUBLIC.
SO TITLE THREE AND TWO PROHIBIT
AGAINST THE PARTICIPANTS WITH
DISABILITY AND SO MEDICAL
PROVIDERS CAN'T REFUSE TO SERVE
PATIENTS WITH DISABILITY, A
DENTIST CAN'T REFUSE A PATIENT
WITH HIV, A GYNECOLOGIST CAN'T
EXCLUDE PARTICIPANTS WITH VISION
DISABILITIES AND THERE ARE A FEW
EXCEPTIONS, IF THE PERSON WITH
THE DISABILITY WOULD IMPOSE A
DIRECT THREAT THE ANALYSIS HAS
TO BE BASED ON SCIENCE NOT JUST
COMMON BELIEFS OR PERCEPTIONS OR
ATTITUDES OR ASSUMPTIONS.
THE OTHER REASON TIME OF PERSON
CAN BE EXCLUDE SOLDIER IF THE
EXCLUSION IS NECESSARY FOR FOR
THE PROVISION OF THE SERVICE
BEING OFFERED AND IF A PERSON'S
DISABILITY WOULD MAKE IT
IMPOSSIBLE TO CONDUCT THE
RESEARCH OR PROVIDE THE MEDICAL
SERVICE, THAT PERSON CAN BE
EXCLUDED BUT TITLE TWO AND THREE
REQUIRE MEDICAL AND RESEARCH
FACILITIES TO REASONABLY MODIFY
THEIR POLICIES WHEN IT'S
NECESSARY TO INCLUDE A PERSON
WITH A DISABILITY.
AND ALL THEIR COMMUNICATIONS ARE
JUST AS EFFECTIVE AS THEIR
COMMUNICATIONS WITH PEOPLE
WITHOUT DISABILITIES.
EYE REASONABLE MODIFICATION CAN
BE ANY CHANGE IN HOW THINGS ARE
DONE THAT IS NECESSARY TOWN CLAD
A PERSON WITH A DISABILITY.
SO, FOR EXAMPLE, THEY MUST HAVE
THEIR FROM SERVING A PERSON WITH
A MOBILITY IMPAIRMENT WHO CAN'T
TRANSFER THEMSELVES ON TO AN
INACCESSIBLE EXAM TABLE AND THE
WAY THEY DO THAT IS PROVIDING AN
ACCESSIBLE EXAM TABLE, A LIFT TO
HELP THE PERSON GET UP ONTO THE
EXAM TABLE AND HAVING TRAINED
PERSONNEL TO ASSIST THE PERSON
WITH THE TRANSFER TO THE TABLE
AND THERE'S A VERY NICE PIECE ON
THIS FROM THE DEPARTMENT OF
JUSTICE AT
ADA.GOV/RESOURCES/MEDICAL --
CARE/MOBILITY.
EFFECTIVE COMMUNICATION IS
ACCOMPLISHED BY PROVIDING AID
AND SERVICE AND THOSE ARE THINGS
LIKE ACCESSIBLE FORMAT
MATERIALS, AND ELECTRONIC FORMAT
MATERIALS AND ACCESSIBLE WEB
SITES AND SIGN LANGUAGE
INTERPRETERS AND THE LIKE.
SO A RESEARCH FACILITY HAS TO
ENSURE IT'S ON-LINE INFORMATION
IS ACCESSIBLE AND IT FORMS THAT
YOU HAVE TO FILL OUT ARE
AVAILABLE IN ACCESSIBLE FORM A
USUALLY THAT'S ACCESSIBLE
ELECTRONIC FORMATS, NOT JUST
PIECES OF PAPER THAT YOU EXPECT
PEOPLE TO FILL OUT WITH A PEN
AND PAPER.
AND A DOCTOR FOR EXAMPLE, HAS TO
PROVIDE A SALE LANGUAGE
INTERPRETER FOR A DEAF PATIENT
AND BY THE WAY, COVERED ENTITY
CANNOT CHARGE EXTRA FOR THE
PROVISION OF AIDS AND SERVICES
EVEN IF THEY COST MORE.
THOSE COSTS ARE PART OF THE COST
OF DOING BUSINESS LIKE RENT.
THE DEFENSE TO REASONABLE
MODIFICATION ARE, UNDUE BURDEN,
IF IT'S AN UNDUE HARDSHIP FOR
THE BUSINESS OR FOR THE STATE OR
LOCAL GOVERNMENT OR IF IT WOULD
FUNDAMENTALLY ALTER THE PROGRAM
OR SERVICES VERY RARE THAT
SOMETHING WOULD FUNDAMENTALLY
ALTER THE PROGRAM OR SERVICE.
SO IT'S VERY UNUSUAL.
AND TITLE 2 AND TITLE 3 APPLY TO
PUBLIC AND PRIVATE PRIMARY AND
SECONDARY SCHOOLS AND PUBLIC AND
PRIVATE COLLEGES AND
UNIVERSITIES INCLUDING MEDICAL
SCHOOLS.
SO THESE CAN'T DISCRIMINATE
AGAINST STUDENTS WITH
DISABILITIES WHO WANT TO STUDY
THE STEM FIELDS OR WHO WANT TO
PRACTICE MEDICINE OR GO INTO
SCIENTIFIC RESEARCH THEY HAVE TO
ACCEPT THOSE STUDENTS AND FORT
ACCOMMODATE THEM.
THIS PROHIBITS ADDRESSES THE
ATTITUDES THAT PEOPLE WITH
DISABILITIES CAN'T SUCCEED IN
STEM OR MEDICAL PRACTICE OR THE
STUDENT THAT IF YOU CAN'T DO
EVERYTHING AS THE DOCTOR YOU
CAN'T BE A DOCTOR AT ALL.
IT ADDRESSES THE ASSUMPTION THAT
A PERSON WON'T OBTAIN THE
LICENSES, THE SCHOOL, FOR
EXAMPLE, CAN'T MAKE ITS
DECISIONS BASED ON ITS
ASSUMPTION OF WHETHER THE
STUDENT WILL BE ABLE TO
EVENTUALLY GET LICENSED.
AND IT NEEDS TO DEAL WITH
WHETHER THE STUDENT CAN
ACCOMPLISH THE GOALS OF THIS
SCHOOL.
AND THE EDUCATION.
IT REQUIRES SCHOOLS NOT TO ACT
ON THOSE STUDENTS AND PHYSICAL
ACCESSIBILITY, REASONABLE
MODIFICATIONS, AND EFFECTIVE
COMMUNICATIONS LIKE THE REST OF
TITLE 2 AND TITLE 3.
SO SCHOOLS NEED TO HAVE
ACCESSIBLE LABS.
YOU HAVE NO IDEA HOW MANY TIMES
I'VE HEARD THAT WE DON'T HAVE AN
ACCESSIBLE LAB SO THIS STUDENT
CAN'T BE A STUDENT HERE.
IT'S NOT AN EXCUSE.
YOU SHOULD HAVE AN ACCESSIBLE
LAB.
THE SCHOOLS HAVE TO ALLOW EXTRA
TIME ON TESTS FOR STUDENTS WITH
LEARNING DISABILITIES FOR
EXAMPLE AND THOSE TO MAKE THEIR
SCIENTIFIC STUDY MATERIALS
ACCESSIBLE FOR BLIND STUDENTS.
I KNOW MANY, MANY BLIND STUDENTS
WHO ARE STUDYING HIGH LEVEL STEM
FIELDS AND HAVING HUGE TROUBLE
GETTING THE MATERIALS THAT THEY
NEED TO STUDY FOR THOSE FIELDS
MADE ACCESSIBLE TO THEM.
NOW TITLE 2 AND TITLE 3 ARE
ENFORCEABLE BY THE PERSON
EXPERIENCING DISCRIMINATION AND
THE JUSTICE DEPARTMENT.
DAMAGES, ATTORNEY FEES AND
INJUNK TIVE RELIEF AND THE
REMEDY FOR TITLE 3 VIOLATIONS
ARE RELIEF AND ATTORNEY FEES YOU
CAN'T GET DAMAGES UNDER TITLE
THREE AND A COUPLE OF
DEVELOPMENTS ARE NOW MAKING
THEIR WAY THROUGH THE RUL MAKING
PROCESS AND UNDER THE ADA
INCLUDING A PROPOSED REGULATION
FROM THE JUSTICE DEPARTMENT ON
ACCESSIBILITY REQUIREMENTS FOR
WEB SITES AND REGULATION FROM
THE ACCESS BOARD ON
ACCESSIBILITY STANDARDS FOR
KIOSKS INCLUDING THE MEDICAL
KIOSKS THAT WE TALKED ABOUT
EARLIER.
SO ANOTHER RELATIVELY NEW LAW
THAT ACTS IN THE SPACE IS
SECTION 1557 OF THE AFFORDABLE
CARE ACT.
PROHIBITS DISCRIMINATION ON THE
BASIS OF DISABILITY AND OTHER
CHARACTERISTICS AND END TEASE
THAT RECEIVE GRANTS FROM THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES.
INCLUDING MEDICARE, CHIP OR
MEDICAID FUNDING AND INSURERS
WHO RECEIVE PREMIUM TAX CREDITS.
SO ENTITIES THAT GET NIH GRANTS
OR CDC GRANTS FOR EXAMPLE ARE
COVERED BY SECTION 1557
SPECIFICALLY AND SECTION 1557
EXTENDS THE TITLE 2 OBLIGATIONS
OF THE ADA TO ALL RECIPIENTS OF
HHS GRANTS.
REGARDLESS OF WHETHER THEY'RE A
PUBLIC ENTER TEE, OR A PUBLIC
ACCOMMODATION.
AND TO ENSURERS.
SO, SOME PRIVATE RESEARCH
FACILITY MIGHT BE ABLE TO ARGUE
THAT THEY'RE NOT COVERED BY
TITLE 3 OF THE ADA, BUT THEY'RE
CLEARLY COVERED BY SECTION 1557.
THE ONLY PROBLEM IS SECTION 1557
DOESN'T APPLY TO EMPLOYMENT.
IT APPLIES TO HOW WE DEAL WITH
PARTICIPANTS.
AND THE CURRENT AND SECTION 1557
GO SOMEWHAT BEYOND TITLE TWO OF
THE ADA BY REQUIRING COVERING
ENTITIES TO HAVE A WRITTEN
POLICY FOR HOW TO PROVIDE
EFFECTIVE COMMUNICATION AND HOW
THEY PROVIDE REASONABLE
MODIFICATION AND TO TRAIN THEIR
EMPLOYEES ON THE OBLIGATION BUT
THEY'RE NOT ENFORCED YET BUT
THEY WILL, 1557 CAN BE ENFORCED
BY THE PERSON BEING
DISCRIMINATED AGAINST OR THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES AND THE FEDERAL
GOVERNMENT IN ADDITION TO
ENFORCING THE LAW IN COURT, CAN
WITHDRAW FEDERAL FUNDS SO THAT
NIH GRANT COULD BE TAKEN AWAY IF
YOU VIOLATE SECTION 1557.
NEXT SLIDE, PLEASE.
ALMOST FINALLY, SECTION 504 OF
THE REHABILITATION ACT HAS BEEN
AROUND SINCE 1973 BUT WASN'T
ENFORCED MUCH UNTIL RECENTLY AND
IT PROHIBITS A DISCRIMINATION BY
ANY ENTITY THAT RECEIVES FEDERAL
FINANCIAL ASSISTANCE FROM ANY
AGENCY, NOT JUST AN HHS.
IT APPLIES TO TITLE 2
PROHIBITION TO ALL FEDERAL GRANT
RECIPIENTS WHETHER THE GRANTS
ARE FROM HHS OR ANY OTHER
AGENCY.
IT CAN BE ENFORCED BY THE
FUNDING AGENCY AND IT ALLOWS FOR
DAMAGES ATTORNEY FEES AND INJUNK
TIVE RELIEF AS WELL AS
REVOCATION OF FEDERAL FUNDING.
IF YOU HAVE FUNDING FROM THE
DEPARTMENT OF JUSTICE OR FUNDING
FROM ANY AGENCY THE VIOLENCE
AGAINST WOMEN AGENCY, YOU CAN
LOOSE THAT IF YOUR
DISCRIMINATING AGAINST PEOPLE
WITH DISABILITYS SO THIS COVERS
MEDICARE AND AS WELL AS COLLEGE
THAT'S GET DEPARTMENT OF
EDUCATION GRANTS AND BOTH HHS
AND THE DEPARTMENT OF EDUCATION
ARE EX POCKETED TO ISSUE NEW
PROPOSED REGULATIONS UNDER
SECTION 504 LATER THIS YEAR
BECAUSE THOSE REGULATIONS
HAVEN'T BEEN UPDATE INSIDE 30
YEARS.
NEXT SLIDE, PLEASE.
FINALLY, REALLY NOW, SECTION 503
OF THE REHABILITATION ACT, THIS
APPLIES TO FEDERAL CONTRACTORS.
IF AN ENTITY DOESN'T HAVE A
GRANT WITH THE FEDERAL
GOVERNMENT BUT AWE CONTRACT IT
WILL PROVIDE EFFECTIVE
COMMUNICATION AND SO FOURTH AND
WITH A GOAL OF HAVING 7% OF ITS
WORKFORCE BE PEOPLE WITH
DISABILITIES.
VOCATIONAL REHABILITATION
SERVICES AND TECHNOLOGY THAT BY
THERE'S MORE AND THIS IS MY
SUNSET COLORED SLIDES SAYING
BEST PRACTICES.
THERE ARE BEST PRACTICES WE CAN
IMPLEMENT TO OVERCOME THIS LONG
HISTORY OF DISABILITY
DISCRIMINATION AND EXCLUSION.
AND IMPORTANT BEST PRACTICES
HERE IS AFFIRMATIVE ACTION.
UNLIKE IN THE RACE CONTEXT
THERE'S NOTHING IN THE
CONSTITUTION THAT LIMITS OUR
ABILITY TO IMPLEMENT AFFIRMATIVE
ACTION FOR PEOPLE WITH
DISABILITIES AND THIS IS IN FACT
A BEST PRACTICE FOR ENTITIES
THAT WANT TO HAVE THEIR
WORKFORCES REPRESENT THE
COMMUNITY.
AND AFFIRMATIVE ACTION CAN TAKE
THE FORM OF TARGETED OUTREACH
AND RECRUITING.
TARGETED APPRENTICESHIP AND
INTERNSHIP PROGRAMS AND
HIGHERING GOALS MAINTAINING
RESUMES OR CONTRACTING WITH A
RECRUITER THAT SPECIAL SIZES IN
THAT AND FAST TRACK HIGHERING
AUTHORITY AND IT'S UNDER
SCHEDULE A WHERE YOU GET TO
SCHOLARSHIP SOME OF THE CIVIL
SERVICE, REQUIRE OR SKIP THE
COMPETITION REQUIREMENTS IF IF
YOU ARE HIRING A PERSON WITH A
DISABILITY AND IT SAVES CERTAIN
REQUIREMENTS AGAIN LIKE SKIPPING
A CIVIL SERVICE TEST AND NOT
HAVING TO BARRIER TO EMPLOYMENT
AND INCLUDING HIRING PREVALENCES
LIKE POINTS PREVALENCES OR WHEN
THERE ARE TWO CANDIDATES THAT
ARE EQUAL AND AND THE DISABILITY
AND OR HAVING MANDATORY WHEN YOU
HAVE A CANDIDATE WITH A
DISABILITY.
THESE ARE SOME OF THE BEST
PRACTICES FOR INCREASING OUR
REPRESENTATION.
>>TERRIFIC REPRESENTATION.
THANK YOU, VERY MUCH.
I WANT TO START BY SAYING EARLY
IN THE FIRST 10 MINUTES OF YOUR
PRESENTATION, YOU MENTIONED A
DOJ ADA RESOURCE CAN YOU SLOWLY
ARTICULATE THE WEBSITE FOR THE
AUDIENCE.
>>I WILL DO THAT AND I WILL PUT
IT IN THE CHAT.
HOLD ON ONE SECOND.
IT'S WWW.ADA.GOV.
SO THIS IS A WEBSITE ALONE WITH
A LOT OF INFORMATION AN
AND/MEDICAL/CARE/MOBILITY.
OKAY?
>>THANK YOU.
>>IF ANY OF THE TECHNOLOGY
PEOPLE COULD PUT THAT INTO THE
Q&A ANSWERS, I WOULD BE GRATEFUL
BECAUSE I DON'T SEEM TO BE ABLE
TO DO THAT.
I TRIED TO.
SO, LET'S GET TO SOME OF THE
OTHER QUESTIONS THAT WE HAD.
THE DEFINITION OF REASONABLE
ACCOMMODATION AND UNDUE
HARDSHIP.
COULD YOU HELP OUR ATTENDEES
UNDERSTAND WHAT THAT COMES DOWN
TO?
>>SURE.
REASONABLE MEANS REASONABLE IN
THE GENERAL SENSE.
USUALLY IT MEANS IF YOU CAN
POINT TO OTHER PEOPLE WHO HAVE
DONE IT OTHER PLACES WHO HAVE
DONE THIS ACCOMMODATION OR IF
YOUR EMPLOYER ITSELF HAS DONE
THIS ACCOMMODATION IN THE PAST,
THEN IT'S CLEARLY REASONABLE.
BUT YOU CAN ALSO SHOW THAT
SOMETHING IS REASONABLE JUST BY
SHOWING THAT IT CAN BE DONE.
THAT IT'S NOT OUTRAGEOUS.
SO THAT SORT OF THE STANDARD.
IS IT OUTRAGEOUS.
IF IT'S NOT IT SHOWS IT'S AN
UNDUE BURDEN FOR THEM.
IF IT'S REASONABLE IN THE
GENERAL SENSE, IT HAS TO BE IN
ORDER FOR THEM TON DO IT AND AND
THEY HAVE TO SHOW WHY.
IT'S THEIR BURDEN TO SHOW IT'S
AN UNDUE BURDEN, SO IT'S
SWITCHING TO THEM AND THIS COMES
UP A LOT IN MEDICAL SCHOOL AND
RESIDENTS SEE AND I ACTUALLY
HAVE A PARTNER WHO BASICALLY
SPECIALIZES IN WORKING WITH
RESIDENTS WHO ARE BEING DENIED
ACCOMMODATIONS BECAUSE OF THIS
ATTITUDE IS THAT YOU HAVE TO BE
SUPER HUMAN TO BE A DOCTOR.
BUT IT IS NOT A BLACK AND WHITE
DECISION, OF COURSE,
UNFORTUNATELY.
IT ALWAYS DEPENDS ON THE
CIRCUMSTANCES.
>>GREAT.
THANK YOU, I'M TRYING TO READ
THIS QUESTION, WHICH IS LONGISH.
>>I UNDERSTAND FROM THE Dr.
JANE COX INSTITUTIONS ARE
ALLOWED TO DETERMINE THEIR OPEN
THRESHOLDS FOR A COMPUTATIONS,
DOCUMENTATION.
INSTITUTIONS ARE INCREASINGLY
ABLE TO USE ONE -- USE OWNERS
DOCUMENT REQUIREMENTS TO DENY
COMBINATIONS WHILE CLAIMING THEY
ARE ENGAGING IN THE ADA
COMPLIANT ITERATIVE COMPLIANCE
AND SOME OF IT DATA CITED
EARLIER IN PEPPER SIZED
PRESENTATION.
ARE THERE PARTS OF THE ADA THAT
PROTECT PERSONS WITH
DISABILITIES FROM HAVING THEIR
OWN UNDUE BURDEN IMPOSED UPON
THEM BY THE INSTITUTIONS
REQUIRING DOCUMENTATION, FOR
EXAMPLE, CONTINUOUS NEURO
PSYCHIC TESTING OR CURRENT
QUOTE-UNQUOTE PHYSICIAN LETTERS
FOR A LIFELONG AND OR STABLE AND
WELL ESTABLISHED CONDITION.
>>SO THIS IS A TOUGH QUESTION.
THERE'S NOTHING EXPLICIT IN THE
ADA THAT SAYS THAT LIMITS WHAT
THE ENTITY CAN REQUIRE IN ORDER
TO HAVE YOU DEMONSTRATE THAT YOU
HAVE A DISABILITY.
AT SOME POINT, I WOULD ARGUE CAN
THIS IS JUST ME ARGUING AND TAKE
MY LEGAL ADVISE FOR WHAT YOU
PAID FOR IT -- ADVICE FOR WHAT
YOU PAID FOR IT, BECAUSE I DON'T
KNOW YOUR SITUATION SUFFICIENTLY
TO GIVE YOU A LEGAL OPINION.
IN MY OPINION, SOME FOLKS COULD
ARGUE THAT ONCE THE BURDEN
BECOMES SO GREAT THAT YOU CAN'T
POLITICACCOMPLISH IT OR IT'S REY
UNNECESSARY, THEY ARE DENYING
YOU AN ACCOMMODATION AND YOU CAN
GO AND GO TO COURT AT THAT POINT
AND SAY, LOOK, I HAVE A
REASONABLE ACCOMMODATION
REQUEST, THEY ARE CLEARLY
THROWING UP UNNECESSARY BARRIERS
TO ME GETTING IT AND THAT'S A
DENIAL OF MY ACCOMMODATION AND
IT SHOULD BE TREATED AS AN ADA
VIOLATION.
>>UP WITH MORE QUESTION AND
THEN WE NEED TO MOVE ON.
SO IT THIS QUARRY IS HHA GRANT
FUNDING UNDER THE LORNA BREEN
ACT SUCH AS SO-CALLED PHYSICIAN
HEALTH PROGRAMS WOULD BE
THREATENED IF SUCH A GRANTEE IS
NOT COMPLIANT WITH THE ADA.
VIA THE REHAB ACT SECTION 504.
>>RIGHT.
WHO ENFORCES THIS?
>>THE HHS ITSELF WILL DO THE
FUNDS WITHDRAWAL AND OR THEY CAN
MAKE A RECOMMENDATION, A
REFERRAL TO THE JUSTICE
DEPARTMENT WHO TAKES IT TO COURT
AND THEN THE INDIVIDUAL CAN ALSO
ENFORCE IT IN COURT.
BUT FOR THE FUNDING WITHDRAWAL,
HHS WOULD DO IT.
THEY HAVE A PROCESS FOR DOING
IT.
>>OKAY.
BUT THERE ARE ADDITIONAL MODES
OF OR ROUTES FOR ENFORCEMENT?
>>YES.
>>GREAT.
>>THANK YOU.
>>WELL, THANK YOU, EVERYONE,
FOR WONDERFUL PRESENTATIONS,
WONDERFUL DISCUSSION IN THIS
PARTICULAR PANEL.
WE'RE GOING TO GO AHEAD AND MOVE
ON NOW TO OUR CLOSING KEYNOTE
SPEAKER, Dr. LISA IZONNE, MD
AND PROFESSOR OF MEDICINE,
HARVARD MEDICAL SCHOOL AND BASED
AT MASSACHUSETTS GENERAL
HOSPITAL AND WHERE SHE STUDIES
HEALTHCARE EXPERIENCES OF
PERSONS WITH DISABILITIES.
Dr. IEZZONI IS A MEMBER OF THE
NATIONAL ACADEMY OF MEDICINE IN
THE NATIONAL ACADEMIES OF
SCIENCES AND ENGINEERING AND
MEDICINE.
THANK YOU, LISA, FOR BRINGING US
HERE AND THE CRSCENDO OF TWO
DAYS OF FANTASTIC PRESENTATIONS
AND WE'RE LOOKING FORWARD TO YOU
HELPING US BRING IT ALL
TOGETHER.
>>Lisa Lezzoni: NO, NO, NO, I'M
NOT GOING TO DO THAT.
DON'T PUT TOO MUCH PRESSURE ON
ME.
LET ME GIVE YOU A VISUAL
DESCRIPTION, I'M OLDER WHITE
WOMAN WITH SHORT, CURLY GREAT
HAIR.
I'M WEARING GLASSES AND A BLUE
SCARF BECAUSE IT'S BOSTON AND
IT'S CHILLY AND I'M IN MY HOME
OFFICE.
I WANTED TO JUST SAY THIS IS
BEEN AN EXTRAORDINARY TWO DAYS
AND I WANT TO CONGRATULATE Dr.
CRUZ, THE ENTIRE TEAM THAT PUT
THIS TOGETHER AND THE SPEAKERS
HAVE BEEN TRULY INCREDIBLE AND
I'VE LEARNED A LOT BY BEING ABLE
TO LISTEN IN AND WHEN I WAS
ASKED TO BE THE FINAL KEYNOTE
SPEAKER, YOU ARE LEARY SO I
THOUGHT THAT WHAT I WOULD DO IS
JUST TELL STORIES ABOUT THE LATE
JUDY HUMAN AND Dr. CRUZ WAS
KIND ENOUGH TO LET ME DO THAT,
ALTHOUGH I KNOW THAT SHE WAS
INTERESTED IN MAKING SOME
COMMENTS ABOUT JUDY HUMAN AT THE
BEGINNING OF HER TIME.
I LIKE TO START BY SAYING THAT
THE TITLE OF MY TALK IS "I
PERSIST."
AND I FEEL THAT THAT IS KIND OF
AN EMBLEMATIC CONCLUSION TO OUR
TWO DAYS THAT I PERSIST AND ON
MY FINAL SLIDE I'M GOING TO
TRANSFORM INTO WE PERSIST
BECAUSE THIS IS A QUOTE TAKEN
FROM JUDY FROM HER MEMOIR ABOUT
HER CONCLUSION ABOUT HERSELF AND
HER CAREER THAT SHE PERSISTS.
NEXT SLIDE, PLEASE.
ALL RIGHT, SO, WHEN YOU TALK
ABOUT JUDY HUMAN HER STORY
REALLY STARTS WITH HER ADVOCACY
AROUND THE LAW AND 50 YEARS HAVE
PASSED SINCE THE FIRST MAJOR
FEDERAL DISABILITIES CIVIL
RIGHTS LAW SECTION 504, OF THE
REHABILITATION ACTED OF 1973.
BE EXCLUDED IN AND THE BENEFITS
OF AND ONE THING I FORGOT, ONE
OF THE THINGS ABOUT ZOOM IS YOU
CAN'T SEE PEOPLE WHO ARE
WHEELCHAIR USERS AND I'VE BEEN A
WHEELCHAIR USER FOR 35 YEARS AND
I AM REFLECTING LIVED EXPERIENCE
IN SOME OF MY COMMENTS OF THIS
SIMILAR TO JUDY'S EXPERIENCE.
THAT LAW PASSED IN 1973, IT'S
NOT QUITE 50 YEARS.
AND PART THAT HAVE IS BECAUSE
THE TWO PRESIDENTIAL
ADMINISTRATION THAT'S CONFRONTED
IT REALLY DID NOT WANT TO WRITE
TO IMPLEMENT IT SO I THINK THAT
THIS IS A VERY INTERESTING
CAUTIONARY TALE AT THE START OF
DISABILITY CIVIL RIGHTS THAT
NEITHER NIXSON NOR THEN THE
CARTER ADMINISTRATION REALLY
WANTED TO GET GOING ON SECTION
504.
SO, FINALLY, THE AMERICAN
COALITION OF CITIZENS WITH
DISABILITIES WHO CREATED THIS
CUTE LITTLE YELLOW PIN THEY WORE
BACK THEN, EVEN THOUGH IT DID
SAY HANDICAPPED HUMAN RIGHTS ON
IT, SAID THEY WOULD ACT IF
SECTION 504 REGULATIONS WERE NOT
SIGNED BY APRIL 5th OF 1977
AND JOSEPH, WHO WAS THEN
CARTER'S SECRETARY OF HEALTH AND
EDUCATION AND WELFARE, DID NOT
RESPOND AND SO ACCD ACTED.
AND ONE OF THE LEADERS OF THAT
ACTION WAS OF COURSE, THE LATE
JUDY HUMAN WHO DIED ON
MARCH 4th.
AND I TAKE PUBLIC TRANSPORTATION
HOME FROM MY WORKPLACE.
I HAVE TO TAKE A BUS AND THE
SUBWAY AND I WAS ON THE 86 BUS
WHICH GOES PAST THE GBH PUBLIC
TELEVISION STUDIOS ON MARKET
STREET IN BRIGHTON,
MASSACHUSETTS AND I SAW OUT OF
THE CORNER OF MY EYE THIS HUGE,
HUGE IMAGE OF JUDY.
NOW THIS IS THE DIGITAL MURAL
THE SIDE OF THE GBH STUDIOS THAT
GOES OVER ROUTE 90 GOING INTO
BOSTON MANY OF THE DIGITAL MURAL
IS ENVIRONMENTALLY APPROPRIATE
IT USES LED TECHNOLOGY BUT IT IS
A 35-FOOT BY 40-FOOT PICTURE AND
I AM SURE THAT THE LATE JUDY
HUMAN WHO I KNOW, WOULD HAVE
BEEN VERY HAPPY TO HAVE THIS
HUGE IMAGE OF HER DISPLAYED OVER
ROUTE 90 GOING INTO BOSTON.
SO NEXT SLIDE.
HERE IS WHERE JUDY COMES IN.
SHE WAS PART OF THE GROUP THAT
SAID NOPE, NOPE, EVE GOT TO GET
SECTION 504 IMPLEMENTED AND
WE'RE GOING TO PROTEST AND MAKE
SURE IT HAPPENS AND STARTING
APRIL 5th OF 1977, SHE WAS ONE
OF THE LEADERS OF WHAT
ENTITLEDDED UP BEING ALMOST A
MONTH-LONG SIT-IN OF A SAN
FRANCISCO FEDERAL BUILDING AND
THIS SLIDE SHOWS SOME PICTURES
OUTSIDE OF SOME PROTESTORS AND
THEN IT SHOWS PEOPLE INSIDE WITH
JUDY HUMAN INSIDE CORNER OF THE
TABLE WHO WERE PROTESTING FOR
THE CARTER ADMINISTRATION TO PUT
THE REGULATIONS FOR SECTION 504
INTO PLACE.
SO, JUDY HUMAN WAS AGAIN ONE OF
THE LEADERS OF ABOUT 150
PROTESTORS WHO STAYED FOR ALMOST
A MONTH INSIDE OF THIS FEDERAL
BUILDING AND AS SHE SAID IN HER
MEMOIR, AT THE START OF HER
DEMONSTRATION AT THE HEW OFFICES
OFFICIALS TREATED US WITH CON
DEN SENG, GIVING US COOKIES AND
PUNCH AS IF YOUR WORSHIP ON SOME
KIND OF FIELD TRIP.
BUT FROM BEING OPPRESSED
INDIVIDUALS, INTO BEING
EMPOWERED INDIVIDUALS.
WE DEMONSTRATED TO THE ENTIRE
NATION THAT DISABLED PEOPLE
WOULD TAKE CONTROL OVER OUR OWN
LIVES AND TAKE LEADERSHIP AND
THE STRUGGLE FOR EQUALITY.
AND JOSEPH SIGNED THE
REGULATIONS ON APRIL 28th,
WHICH TO THE DAY, SO IT'S AN
ANNIVERSARY IN 1977.
YEARS AGO FORWARD, WE HAVE THE
STAY OF HIS PRESIDENCY
JULY 26th, 1990 WHEN HE SIGNED
THE AMERICANS WITH DISABILITIES
ACT.
THE 88 IS A COMPLICATED LAW.
IT'S UNLIKE OTHER CIVIL RIGHTS
LAWS IN A TWO-STEP KIND OF
STRUCTURE.
FIRST YOU HAVE TO PROVE THAT YOU
ACTUALLY HAVE A DISABILITY AND
THEREFORE YOU ARE ENTITLED TO
PROTECTION UNDER THE ADA.
AND THIS REQUIRES LARGELY A
MEDICAL MODEL TYPE OF
PERSPECTIVE ON WHO QUALIFIES AS
DISABLED UNDER THE ADA AND WE
HEARD SOME GREAT TALKS AT THE
BEGINNING OF THE CONFERENCE
YESTERDAY MORNING ABOUT THE
SOCIAL MAUD VERSE KIND OF
THINKING AND THEN YOU HAVE TO
PROVE THAT YOU ARE INJURED OR
HARM BECAUSE OF ITS DIS ABILITY
OR FAILURE TO RECEIVE REASONABLE
ACCOMMODATIONS AND I WAS GLAD TO
HEAR YOU SAY THERE AREN'T BLACK
AND WHITE CRITERIA FOR A REAP
ABLE ACCOMMODATION OR IN FACT
ULTIMATELY WHO MAKES THE
DECISION.
A LOT OF THE WAY THAT I AM
TALKING ABOUT THIS REFLECTS IN A
35-YEARS OF OBSERVING WHAT IT'S
LIKE FOR PEOPLE WITH
DISABILITIES TO TRY TO GET THESE
KIND OF PROTECTIONS UNDER THE
LAW.
NEXT SLIDE.
SO THEN, OF COURSE, WE HAVE THE
U.S. SUPREME COURT.
THIS IS A PICTURE OF THE U.S.
SUPREME COURT WITH WILLIAM
RENQUEST AS THE CHIEF JUSTICE
BECAUSE THIS WAS A SUPREME COURT
IN PLACE AFTER THE ADA WAS PUT
IN PLACE AND IT'S THE SUPREME
COURT THAT BEGAN TO RATCHET DOWN
ON WHO WOULD QUALIFY AS DISABLED
AND THEREFORE GAP PROTECTION
UNDER THE ADA.
SO THEN OF COURSE WE HAD GEORGE
W. BUSH IN 2008 WITH HIS DAD
STANDING TO THE LEFT OF THIS
PICTURE OF HIM SURROUND BY A
BUNCH OF PEOPLE INCLUDING
SENATOR HARKIN FROM IOWA,
SIGNING THE ADA AMENDMENT ACT
THAT IF YOU LOOK AT IT USES VERY
MEDICAL MODEL LANGUAGE IN
DETERMINELANGUAGE UNDER THE ADA.
BUT CONSIDERABLE SUBJECTIVITY
STILL EXISTS AND JUDGMENTS ARE
MADE ON ASSUMPTIONS THAT ARE
POSSIBLY ERRONEOUS ABOUT THE
IMPACT, WHETHER SOMEONE ACTUALLY
HAS A DISABILITY.
NOW, THE REVEREND MARTIN LUTHER
KING JUNIOR IS A PERSON WE TURN
TO MAKE PRONOUNCEMENTS OF
TRUTHS.
AND AS HE SAID IN THIS TALK AT
THE WESTERN MICHIGAN UNIVERSITY
IN DECEMBER OF 1963, LEGISLATION
CANNOT REALLY SOLVE THE PROBLEM
BECAUSE YOU'VE GOT TO CHANGE THE
HEART AND YOU CAN'T CHANGE THE
HEART THROUGH LEGISLATION.
YOU CAN'T LEGISLATE MORALS.
BUT BEHAVIOR CAN BE REGULATED.
AND SO THEREFORE THERE'S A NEED
FOR CIVIL RIGHTS LEGISLATION.
SO WHAT I'D LIKE TO DO IN THE
FINAL FEW MINUTES OF MY TALK
WHICH IS SHORT, AS YOU CAN TELL,
IS I WOULD LIKE TO DRAW FROM
JUDY HEUMANN SOME LESSONS THAT
WE CAN LEARN TOWARDS ADDRESSING
ABLEISM.
WHICH IS THE TOPIC OF THE
CONFERENCE SO I'M GOING TO DRAW
FROM HER MEMOIR PUBLISHED IN
2000 WIN WITH CHRISTIAN JOINER.
AND THEN A TED TALK SHE GAVE I
THINK IN 2018 AND THIS IS A
PICTURE OF JUDY IN A BRIGHT, RED
SHORT-SLEEVED JACKET IN A
WHEELCHAIR AT THE TED TALK.
AND THEN I WAS PRIVILEGED ALONG
WITH JAVIER ROBLES TO INTERVIEW
JUDE FOR THE THEME ISSUE ON
DISABILITY THAT CAME OUT FROM
THE HEALTH POLICY JOURNAL,
HEALTH AFFAIRS, IN OCTOBER OF
2022 THAT INTERVIEW WAS
VIDEOTAPED AND IN A HALF-HOUR
INTERVIEW AND IT'S ON-LINE AND
YOU CAN LOOK AT IT AND THAT
ISSUE OF HEALTH AFFAIRS IS OPEN
ACCESS AND IT HAS REALLY JUST
REALLY WONDERFUL ARTICLES IN IT
AND IF YOU HAVEN'T LOOKED AT IT
YOU SHOULD.
SO ONE OF THE THINGS THAT JUDY
VERY CLEARLY SAID IN HER MEMOIR
WAS THAT RESEARCH INFORMS
ADVOCACY.
AND SHE HAD TO ADVOCATE, ALL OF
HER LIFE.
WHEN HER MOTHER TRIED TO ENROLL
HER IN KINDERGARTEN, HOW SHE WAS
VIEWED AS A FIRE HAZARD AND SO
WASN'T GOINWASN'T GOING TO BE AO
THE LOCAL SCHOOL, YOU NEED
RESEARCH TO IDENTIFY BARRIERS
AND DEVELOP STRATEGIES AND
ADDRESS THESE BARRIERS, BUT AS
JUDY SAID, IN HER INTERVIEW WITH
US, THERE'S A LACK OF SYSTEM AT
TECH DATA ON DISABILITY THAT
IMPEDES BOTH RESEARCH AND POLICY
MAKING AND SHE NOTED THIS WAS A
ESPECIALLY TRUE DURING THE
COVID-19 PANDEMIC THAT LEFT
PUBLIC-HEALTH OFFICIALS WITHOUT
CRITICAL INFORMATION ON
POPULATIONS WITH DISABILITIES
WHO WERE AT PARTICULAR RISK AND
RESEARCH ALSO COM BATS ERRONEOUS
ASSUMPTIONS ABOUT ABLEISM AND
DISABILITY THAT WE'VE HEARD SO
MUCH ABOUT OVER THE LAST TWO
DAYS.
SO, JUDY ALSO WAS ONE WHO WAS
VERY CLEAR ABOUT THE BASICS.
SHE NEEDED PERSONAL ASSISTANCE
IN HER HOME TO BE ABLE TO LIVE
AND FUNCTION INDEPENDENTLY AND
DO HER WORK.
SO, ONE OF THE THINGS THAT JUDY
WAS ACTUALLY DISAPPOINTED ABOUT
THE ADA WAS THAT SHE FELT IT
DIDN'T GO FAR ENOUGH.
SHE FELT THAT THE ADA IS SHOULD
HAVE GONE FARTHER TO REQUIRE
PEOPLE WITH DISABILITIES AS THE
CONVENTION FOR THE RIGHTS OF
PEOPLE WITH DISABILITIES FROM
THE WORLD HEALTH ORGANIZATION
AND ABOUT WHICH IS TALK ABOUT
THEIR BEING A HUMAN RIGHT TO IN
HOME ASSISTANCE TO ALLOW PEOPLE
WITH DISABILITIES WHO NEED THAT
KIND OF SUPPORT TO LIVE
INDEPENDENT LIVES AND SO WHEN
JUDY MOVED FROM BURKELY,
CALIFORNIA, TO BE THE ASSISTANT
SECRETARY OF THE OFFICE OF
SPECIAL EDUCATION, AND
REHABILITATION SERVICES IN THE
CLINTON ADDIZATION, SAYS SHE
SAID IN HER MEMOIR WHAT IS
WANTING THAN THE PROSPECT OF
MANAGING 400 STAFF AND
$10 MILLION, AN ACCESSIBLE THREE
BEDROOM APARTMENT AND WASHINGTON
D.C.
NEXT SLIDE.
AND I HAVE THE CHANCE TO TALK TO
HER ABOUT THIS IF THE LATE
SUMMER OF 2021 AS A COVID
PANDEMIC SIMMERED AND JUDY TOLD
ME SHE WAS HAVING INCREASING
TROUBLE FINDING IN HOME SUPPOSE
ORDERS AND WE FIND THAT NOW THAT
WITH COVID-19, I WON'T GO ON WHY
THIS MIGHT BE BUT THE PERSONAL
ASSISTANCE SERVICES WORKFORCE
HAS MELTED AWAY AND SOME PLACES
AND SO, SHE, JUDY HEUMANN THIS
INCREDIBLE ICONIC WORRIED HOW
SHE AND HER HUSBAND WOULD MANAGE
AT HOME.
JUDY ALSO RECOGNIZED THAT SHE
HAD MULTIPLE IDENTITIES AND FELT
VERY STRONGLY THAT
INTERSECTIONALITY WAS A CRITICAL
THING TO THINK ABOUT AND SHE
SELF-IDENTIFIED AS A WOMAN, WHO
WAS WHITE, A JEWISH WITH A
IMMIGRANT HERITAGE AND IN HER
GLOBAL WORK WITH A WORLD BANK
AND THE U.S. DEPARTMENT OF
STATE, SHE WITNESSED THAT THE
INTERSECTION IDENTITIES
COMPOUNDED WITH THE
MARGINALIZATION OF PEOPLE WITH
DISABILITIES.
NOW, WHO QUALIFIES DISABLED FOR
THE ADA I'VE TEED UP THAT
QUESTION BUT THESE QUESTIONS ARE
GOING TO BE INCREASINGLY, THINK,
RAISESSED WITH LONG COVID.
THERE'S BEEN A HISTORY OF
CONDITIONS THAT ARE NOT
RECOGNIZED BY MEDICAL
AUTHORITIES CAUSING PROBLEMS FOR
PEOPLE CLAIMING QUOTE-UNQUOTE
DISABILITY.
CHRONIC FATIGUE SYNDROME, FIBER
MYALGIA AND WHAT IS GOING TO
HAPPEN WITH PEOPLE WITH LONG
COVID?
ALL MY PEOPLE WITH LONG COVID
CHANGED THE ELIGIBILITY THINKING
UNDER THE ADA.
WE ALREADY SEE SOME BEGINNING
PUSH-BACK AROUND PEOPLE WITH
LONG-TERM COVID AND WHO HAVE
SYMPTOMS THAT CLEARLY FROM MY
POINT OF VIEW, QUALIFIES
DISABLED BUT FROM A MEDICAL
MODEL, YOU KNOW, THIS IS
SOMETHING WE NEED TO KEEP OUR
EYE ON AS WE MOVE FORWARD.
DESPITE WHAT YOU SAID, A LOT OF
DISCRIMINATION HAPPENS BEHIND
CLOSED DOORS AND THE PERSON WITH
DISABILITY MAY NOT FEEL THAT
THEY HAVE THE ENERGY, THE
KNOWLEDGE, THE MONEY TO GO
FORWARD AND LODGE THAT LAWSUIT
SO NEXT LINE, PLEASE.
I'D LIKE TO JUST TELL YOU A TINY
STORY ABOUT MYSELF.
I WAS A CANDIDATE FOR AN ENDOW
CHAIR AT A BIG PRESTIGIOUS
UNIVERSITY IN THE MIDWEST AND I
WAS REALLY EXCITED ABOUT THIS,
BECAUSE I'M SOMEONE WHO LIVES ON
SOFT MONEY AND WOULDN'T IT BE
AMAZING TO GET AN ENDOW CHAIR.
I WAS ALSO AT THAT POINT A
PROFESSOR AT HARVARD MEDICAL
SCHOOL SO I PROBABLY QUALIFIED
AS KIND OF HAVING SOME RESEARCH
CAPABILITIES.
AND THE INVU WAS SET FOR ME TO
FLY OUT THERE TO INTERVIEW FOR
THE ENDOW CHAIR BUT I CALLED
BEFORE GOING TO TALK TO THE
ADMINISTRATIVE ASSISTANT WHO
ORGANIZED ALL THE INTERVIEWS TO
CONFIRM, THAT THE INTERVIEW
LOCATIONS WOULD BE WHEELCHAIR
ACCESSIBLE.
THERE WAS A PAUSE ON THE OTHER
END OF THE TELEPHONE LINE AND
THE ADMINISTRATIVE ASSISTANT
SAID, WE DIDN'T KNOW YOU USED A
WHEELCHAIR.
AND SO DURING THE TWO-DAY VISIT,
THE PHYSICIAN WHO WAS LEADING
THE RECRUITMENT, RARELY LOOKED
ME IN THE EYE, AND DID NOT SAY
GOOD-BYE AT THE VISITS' END.
I NEVER HEART ANO HEARD ANOTHERM
THEM.
BUT IF APPROXIMATE I WAS TO
CLAIM DISABILITY DISCRIMINATION,
I WOULD SOUND LIKE A FOOL
SAYING, WELL, THE PERSON DIDN'T
LOOK ME IN THE EYE AND DIDN'T
SAY GOOD-BYE TO THEM.
I MEAN HOW WOULD I BE ABLE TO
PROVE THAT ANY OF THIS WAS
ACTUALLY DISABILITY
DISCRIMINATION?
AGAIN, BEHIND CLOSED DOORS.
SO AS ONE OF MY FIRST AND
PROBABLY 300 INTERVIEWEES THAT
I'VE INTERVIEWED OVER MY COURSE
OF DOING RESEARCH SAID TO ME,
DISABILITY CAN BE A LONELY
STATE.
BUT THEN LET'S GO BACK TO JUDY.
AS JUDY SAID IN HER MEMOIR ON
PAGE 156, I PERSIST.
I INSIST ON SPEAKING.
ON BEING HEARD.
AND AS JUDY SAID IN HER TED TALK
AND AGAIN THIS IS A PICTURE OF
HER IN HER TED TALK NEXT SLIDE.
PLEASE.
TOGETHER THAT IT HAS TO BE
TOGETHER WE CAN SPEAK UP FOR
JUSTICE.
TOGETHER WE CAN CHANGE THE
WORLD.
SO INSTEAD OF BEING LONELY, BACK
IN 1979, THE DISABILITY LAW
CENTER WITH JUDY HUEMANN THERE
AND THIS IS A BLACK AND WHITE
PHOTOGRAPH OF ALL THE PEOPLE
FROM THE DISABILITY LAW CENTER
AND I THINK THIS IS A COPY
RIGHTED PHOTO THAT I WAS ABLE TO
TAKE OFF THE WEB.
THEY ALL GOT TOGETHER AND
DECIDED THEY WOULD CHANGE
BERKELEY, CALIFORNIA, AND THEY
WOULD MAKE IT AN ACCESSIBLE
COMMUNITY TO WHICH IT STILL IS
TODAY.
SO I ALWAYS LIKE TO END MY TALKS
WITH INDEPENDENCE DAY AND THE
PLAY FOR SOMEHOW FOR US TO
FIGURE OUT WAYS THAT WE WON'T
FEEL ALONE WHEN WE CONFRONT
ABLEIST STUDENTS AND THAT WE
WILL FIND SOMEWAY TO SUPPORT
EACH OTHER AND MOVE THIS WAY
FORWARD.
THAT'S THE END OF MY TALK, THANK
YOU, VERY MUCH.
>>THANK YOU SO MUCH, LISA.
YOU KNOW, WHEN WE THIS IS WHAT
I'M GOING TO DO -- JUST LISTEN
BECAUSE SHE KNOWS BEST AND I
THINK THAT TALK WAS REALLY PROOF
THAT YOU KNOW WHAT THIS
CONFERENCE NEEDED TO END WITH
AND I'M JUST SO PLEASED WITH IT.
THANK YOU SO MUCH.
>>YES, THANK YOU.
>>I'M SEEING LOTS OF
CONGRATULATIONS FOR YOU IN THE
CHAT BUT NO QUESTIONS.
>>I DID WANT TO SAY SOMETHING
AND I SHOULD HAVE SAID THIS AT
THE BEGINNING, SO MANY PEOPLE
HAVE QUOTED OR RESEARCH THAT I
HAVEN'T FELT LIKE I NEEDED TO.
SO I WANTED TO THANK THE NICHD
FOR FUNDING OUR RESEARCH BECAUSE
IT'S BEEN TOUGH TO GET RESEARCH
FUNDING FOR DISABILITY RESEARCH.
THAT'S ANOTHER PLACE WHERE SO
MANY OF US HAVE FELT ALONE OVER
THE YEARS AND SO Dr. CRUZ, I
WANT TO THANK YOU FOR ALL THAT
YOU HAVE DONE TO SUPPORT OUR
RESEARCH GOING FORWARD.
THANK YOU.
>>THANK YOU FOR DOING THE HARD
WORK.
ALL RIGHT.
WE'RE GOING TO END IT AND I'M
GOING TO TRY TO BRING IT ALL
TOGETHER.
WE'VE HAD SEVERAL QUESTIONS
ABOUT NIH, THIS WAS GREAT, IT'S
ABOUT TIME.
BETTER LATE THAN NEVER, BUT WHAT
ARE YOU GOING TO DO NOW?
THIS WAS GOOD BUT WHAT COMES
NEXT?
SO I WILL START IMMEDIATELY AND
THEN MOVE ON WITH TIME SO MOST
IMMEDIATELY.
THE NIH VIDEO CAST WEBSITE WILL
POST TO THE RECORDING OF
YESTERDAY'S AND TODAY.
SO YOU MIGHT NOT REALIZE THIS IS
BEEN STREAMING THROUGH THE NIH
VIDEO CAST AND WE'VE HAD ANOTHER
20 TO 30 PEOPLE LOGGING IN THAT
WAY.
SO NEXT WEEK, IT GENERALLY TAKES
ABOUT THREE TO FIVE BUSINESS
DAYS FOR THOSE RECORDINGS TO
POST.
SO WE'VE HAD A LOT OF REQUESTS
FOR RECORDINGS OF THIS.
THAT WILL BE PUBLICLY AVAILABLE.
YOU DON'T NEED TO REGISTER OR DO
ANYTHING.
IT'S ON THE NIH VIDEO CAST PAST
EVENTS WEBSITE.
I'M GOING TO CONFIRM WITH THE
SPEAKERS, WHICH PARTS OF THEIR
PRESENTATIONS WITH BE SHARED
WIDELY.
WE SAW UNPUBLISHED DATA AND
PERSONAL THINGS AND THEY MAY NOT
WANT IT ALL SHARED AND I RESPECT
THAT.
SO I'M GOING TO CONFIRM WITH
THEM WHAT CAN AND CANNOT BE
SHARED.
SOME OF THE PRESENTATIONS HAVE
NOT BEEN FULLY REMEDIATED FOR
ACCESSIBILITY SO WE ALSO NEED
SOME TIME TO MAKE SURE THOSE ARE
IN A FORM TA WE CAN DISTRIBUTE.
SO YOU WILL BE GETTING, ANYONE
WHO REGISTERED, YOU BE GETTING
AN E-MAIL FROM ME.
GIVE ME A FEW WEEKS TO MAKE SURE
I GET ALL THAT ACCESSIBILITY
SQUARED AWAY.
SO, IN THAT E-MAIL, YOU WILL
HAVE THE LINKS, IF I CAN GET IT
TOGETHER WE'LL HAVE THE SURVEY,
BECAUSE I WANT SOME MORE
FEEDBACK FROM YOU, AND THEN
WE'LL HAVE THE PRESENTATIONS.
SPEAKING OF E-MAILS, I'M SORRY,
THAT NOISE.
I WRITE A NEWSLETTER EVERY
COUPLE WEEKS.
THAT'S HOW I INFORM PEOPLE ABOUT
WHAT IS GOING ON AT NIH IN
REHABILITATION RESEARCH.
SO, I NOW HAVE 500 NEW FRIENDS.
SO YOU WILL SEE ME IN YOUR INBOX
EVERY COUPLE WEEKS IF IF YOU
DON'T WANT ME THERE, JUST CLICK
THE UNSUBSCRIBE AND I'LL GO
AWAY.
BUT THAT'S HOW I COMMUNICATE AND
WE'LL LET YOU GUYS KNOW ABOUT
WHAT IS GOING ON FOLLOWING THIS
CONFERENCE.
MIDTERMS STEPS.
NIH IS A RESOURCE ORGANIZATION
WE'VE HEARD A LOT OF AREAS WHERE
WE NEED TO DO MORE RESEARCH.
SO, BEFORE WE PUT OUT TARGETED
NOTICES OF FUNDING
OPPORTUNITIES, YOU MIGHT HEAR
THE TERM NOFO AND NOTICE OF
FUNDING OPPORTUNITY.
IT'S WHAT WE'RE CALLING FOAs
NOW.
WE HAVE TO CLEAR THAT CONCEPT
WITH AN ADVISORY BOARD OR A
COUNCIL.
SO LAST YEAR, I CLEARED A
CONCEPT FOR ABLEISM AT THE
NATIONAL ADVISORY BOARD FOR
MEDICAL REHABILITATION RESEARCH.
YOU WILL BE SEEING MORE FROM
NCMRR FROM ME, THE BUCK STOPS
HERE, ON ABLEISM.
THE OTHER THING I WANTED TO LET
YOU KNOWS IS THAT THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITY COUNCIL CLEARED
A CONCEPT THAT'S VERY RELATED TO
IT CONFERENCE AND IT'S THE
INTERSECTION OF DISABILITY WITH
OTHER MARGINALIZED IDENTITIES
SO, RACIAL AND ETHNIC MINORITY,
SEXUAL GENDER MINORITY, RURAL
POPULATION, ET CETERA.
SO MORE TO COME THERE.
AND NIH PLANNING COMMITTEE.
WE'RE GOING TO PULL THIS
TOGETHER.
WORE GOING TO PUT TOGETHER A
PAPER.
HAVE A JOURNAL IN MIND.
HOPEFULLY WE CAN GET IT OUT
THERE.
BUT AT A MINIMUM, THERE WILL BE
A SUMMARY OF THIS MEETING
PUBLISHED ON OUR WELCOME BACK
SWEBSITE SO YOUWILL HAVE SOMETHO
REFERENCE.
I THINK THE LONGER TERM ISSUE
AND THE ELEPHANT IN THE ROOM IS
THE ACD RECOMMENDATIONS.
SO, WHAT I CAN TELL YOU IS THAT
NIH LEADERSHIP IS SETTING UP
STRUCTURES TO RESPOND TO THOSE
RECOMMENDATIONS AND KEY LEADERS
HAVE BEEN IDENTIFIED.
I AND OTHERS MEMBERS OF THE
PLANNING COMMITTEE HAVE BEEN IN
CONVERSATIONS WITH THOSE
LEADERS.
WE'VE DIRECTED THEM TO THIS
WORKSHOP.
SO, YOU KNOW, THINGS ARE
HAPPENING.
MY HOPE THAT WE WILL BE ABLE TO
HAVE ONE OF THOSE LEADERS SPEAK
AT NCMRR'S ADVISORY BOARD IN
DECEMBER SO ROUGHLY A YEAR AFTER
THE RECOMMENDATIONS TO GIVE AN
UPDATE ON WHERE THOSE
RECOMMENDATIONS ARE.
I REALIZE THAT'S NOT A PERFECT
VENUE BUT IT'S THE ONE I HAVE
INFLUENCE OVER AND I GET TO SET
THE AGENDA SO IF I'M GOING TO
USE IT FOR WHAT I THINK WE
SHOULD USE IT FOR.
SO, IN CLOSING, JUST ANOTHER
HUGE, HUGE THANK YOU TO THE
SPEAKERS, THE AUDIENCE, THE
PLANNING COMMITTEE AND ALL THE
LOGISTICS SUPPORT AND THE PEOPLE
BEHIND THE SCENES MAKING THIS
HAPPEN AND YOU KNOW, I HAD A
FEELING THIS WAS GOING TO BE A
REALLY GOOD MEETING BUT IT IS
JUST EVEN EXCEEDED MY
EXPECTATIONS.
SO, THANK YOU SO MUCH.
BE SAFE.
AND YOU WILL HEAR MORE FROM US.
THANK YOU.
BYE.