>>WELCOME.
THANK YOU FOR JOINING US TODAY.
I KNOW THAT YOU HAVE VERY BUSY
LIVES AND THAT YOU HAVE MANY
DEMANDS ON YOUR PRECIOUS TIME
AND WE REALLY APPRECIATE THAT
YOU ARE CHOOSING TO SPEND THE
NEXT TWO DAYS WITH US TALKING
ABOUT THIS IMPORTANT TOPIC.
MY NAME IS THERESA CRUZ AND I
HAVE THE PLEASURE OF BEING THE
DIRECTOR OF THE NATIONAL CENTER
FOR MEDICAL REHABILITATION
RESEARCH.
WHICH IS LOCATED WITHIN THE
EUNICE KENNEDY SCHRIBER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT.
AND NCMRR IS THE HOST OF THIS
CONFERENCE.
MY VISUAL DESCRIPTION IS THAT I
AM A MIDDLE-AGED WHITE WOMAN
WITH CHIN-LENGTH BROWN HAIR AND
BLUE EYES.
I'M WEARING MY FAVORITE GREEN
SHIRT AND I HAVE A BLUE ZOOM
BACKGROUND.
I WOULD ENCOURAGE THAT THE
SPEAKERS TODAY AND TOMORROW
PROVIDE A VISUAL DESCRIPTION
BEFORE SPEAKING TO ACCOMMODATE
THOSE WITH VISUAL IMPAIRMENTS.
I'M GOING TO START OFF WITH
HOUSEKEEPING AND ACCESSIBILITY
FEATURES.
THIS MEETING IS BEING RECORDED.
YOU WILL BE ABLE TO WATCH THE
RECORDING ON THE NIH VIDEO CAST
WEBSITE.
WE ASK THAT YOU PLEASE KEEP YOUR
CAMERA AND MIC OFF WHEN NOT
SPEAKING.
IF YOU NEED TECHNICAL
ASSISTANCE, PLEASE USE THE CHAT
TO NOT CONTACT OUR LOGISTICS
CONTRACTORS.
IF APPROXIMATE YOU AREN'T ABLE
TO ACCESS THE CHAT, PLEASE SEND
AN E-MAIL WITH TECH SUPPORT IN
THE SUBJECT LINE TO
SSTARKE@INFINITYCONFERENCES COM
COM.
THERE ARE ASL INTERPRETERS AND
REAL-TIME CAPTIONING AVAILABLE
THROUGHOUT THE CONFERENCE.
IN ORDER TO ACCESS THE
CAPTIONING, PLEASE CLICK ON THE
CLOSED CAPTION ICON.
YOU CAN ADJUST THE SIZE OF THE
CAPTIONS WITH THE UP CARAT AND
THE BLUE DOT ON THE SLIDE.
AND WE DO WANT THIS CONFERENCE
TO BE A DIALOGUE.
SO WE HAVE PLANNED TIME FOR Q&A
THROUGHOUT.
WE ASK THAT YOU PLEASE PUT YOUR
QUESTIONS IN THE Q&A BUTTON AT
THE BOTTOM OF YOUR ZOOM SCREEN
AND THE NIH STAFF WILL RECEIVE
THOSE QUESTIONS AND MODERATE THE
DISCUSSIONS.
SO BEFORE MOVING ON WITH THE
PROGRAM, I WOULD LIKE US TO TAKE
A BRIEF MOMENT OF SILENCE TO
REFLECT ON THOSE IN THE
DISABILITY COMMUNITY WHO ARE NO
LONGER WITH US.
PARTICULARLY THOSE WHO HAVE
WORKED TO CHAMPION DISABILITY
RIGHTS AND ADVOCATED FOR THE I
AM CONCLUSIINCLUSION OF DISABILE
IN SCIENTIFIC PROFESSIONS OR
RESEARCH.
LET US PAUSE TO REMEMBER THEIR
LIVES AND CONTRIBUTIONS TO OUR
WORK.
>>Theresa Cruz: THANK YOU.
I WANT TO THANK THE PLANNING
COMMITTEE, WHO CAME FROM ACROSS
MULTIPLE INSTITUTES NOT, CENTERS
AND OFFICES AT NIH TO PUT
TOGETHER THIS WORKSHOP.
MANY OF WHOM YOU WILL MEET OVER
THE COURSE OF THE CONFERENCE.
I'D ALSO LIKE TO THANK OUR
EXTERNAL CHAIRS, KATIE MCDONALD
AND SHERRI WHO HELPED SHAPE THE
AGENDA.
I HAVE A SPECIAL THANKS FOR THE
NIH OFFICE OF THE BEHAVIORAL AND
SOCIAL SCIENCE FOR THEIR
FINANCIAL CONTRIBUTION TO THE
EVENT AND A HUGE THANKS TO THE
LOGISTICS TEAM THAT IS WORKING
BEHIND THE SCENES TO MAKE THIS
CONFERENCE HAPPEN.
IN RECENT YEARS, BIOMEDICAL AND
BEHAVIORAL RESEARCH AT NIH HAS
COME TO ACKNOWLEDGE MANY
STEREOTYPES, ASSUMPTIONS OR
OTHERRISMS INFLUENCED THE WORK
THAT WE DO.
THE QUESTIONS THAT WE ASK, THE
STUDIES THAT WE CONDUCT, THE
PARTICIPANTS WE ENGAGE WITH AND
THE PEOPLE WE HIRE AND PROMOTE.
THIS IS PART OF AN EVENT TO
INCLUDE PEOPLE WITH DISABILITIES
AND THE BARRIERS THEY EXPERIENCE
IN THAT LARGER CONVERSATION OF
INCLUSION AND EQUITY.
I'VE DONE A LITTLE INTERVIEWING
AND I BELIEVE THAT THIS IS NIH'S
FIRST CONFERENCE ON ABLEISM.
I DON'T KNOW ABOUT YOU, BUT THE
FIRST TIME I DO SOMETHING, IT'S
NEVER QUITE AS GOOD AS I WANT IT
TO BE.
THE PLANNING COMMITTEE HAS
STRIVEN FOR IN CONCLUSIVE TEE
AND DIVERSITY OF PERSPECTIVES
BUT THERE ARE AREAS THAT WE HAVE
MISSED.
THE DISABILITY COMMUNITY IS WIDE
AND VARIED AND WE MAY NOT BE
REPRESENTING ALL THE VIEWS AND
PERSPECTIVES OF THOSE DEVRIES
COMMUNITIES.
WITH THE ADMISSION OF THAT SHORT
COMING IN ADVANCE, I WELCOME
YOUR FEEDBACK ABOUT THE AREAS WE
NEED TO EXPLORE FURTHER AND AND
WHAT NEEDS TO BE ADVANCED.
JUST BECAUSE THIS IS NIH'S FIRST
WORKSHOP ON THE TOPIC.
I DO NOT MEAN TO IMPLY THE
CONCEPT OF ABLEISM O THE MOVEMET
FOR DISABILITY JUSTICE IS NEW.
THIS IS A LONGSTANDING FIGHT FOR
CIVIL RIGHTS BY THE DISABILITY
COMMUNITY.
CULMINATING REALLY IN THE
PASSAGE OF THE REHABILITATION
ACT OF 1973.
WE'RE CELEBRATING 50 YEARS OF
THE REHAB ACT WHICH PROHIBITS
DISCRIMINATION ON THE BASIS OF
DISABILITY AND PROGRAMS
CONDUCTED BY FEDERAL AGENCIES,
AND FEDERAL EMPLOYMENT, AND THE
EMPLOYMENT PRACTICES OF FEDERAL
CONTRACTORS.
GIVEN THIS LANDMARK LEGISLATION,
AND THE LEGISLATION THAT HAVE
FOLLOWED, LIKE THE AMERICAN'S
WITH DISABILITIES ACT, EVEN WITH
THEM, WE KNOW THAT THERE'S MORE
WORK THAT NEEDS TO BE DONE.
JUST PART OF THE REASON WE'RE
HAVING THIS CONFERENCE.
IT'S MY HOPE THAT THIS WORKSHOP
ELEVATES THE CONVERSATION AT NIH
ABOUT ABLEISM AND PROVIDES A
PLATFORM TO HEAR THE WORK BY OUR
SPEAKERS.
TO BRIEFLY GO OVER THE AGENDA,
WE HAVE FOUR SESSIONS OVER TWO
DAYS.
TODAY WE'LL HEAR A KEYNOTE FROM
BONNIE SWENOR WHO WILL GIVE US A
CALL TO ACTION.
FOLLOWED BY SESSION 1 WHERE THE
SPEAKERS WILL DEFINABLISM AND
DESCRIBE HOW IT MANIFESTS IN
RESEARCH AND HEALTHCARE.
IN SESSION 2 HOW ABLEISM
DISABILITIES AND HEALTH
DISPARITIES AND WE WILL WRAP-UP
WITH A PANEL OF EXPERTS.
PEOPLE WITH LIVED EXPERIENCE WHO
ARE ENGAGING IN BIOMEDICAL
RESEARCH TO MAKE THAT RESEARCH
MORE IMPACTFUL TO PEOPLE WITH
DISABILITIES.
TOMORROW, WE'LL START AT 10:30,
SO HALF AN HOUR EARLIER WITH AN
INTERVIEW WITH DISABILITY
ADVOCATE GAELYNN LEA AND A
KEYNOTE AND THE NEXT SESSION
WILL BE ON TRAINING AND CAREER
DEVELOPMENTS FOCUSING ON
EDUCATING CLINICIANS ABOUT
DISABILITY AS WELL AS HOW
RESEARCHERS AND CLINICIANS WITH
DISABILITY NAVIGATE THEIR
CAREERS.
AND WE'LL HAVE PRESENTATIONS
ABOUT THINGS WE CAN BE DOING
RIGHT NOW TO BE MORE INCLUSIVE
WITH OUR WORK.
AND THEN FINALLY, I'M VERY
PLEASED THAT LISA IEZZONI THAT
WILL BE A TRIBUTE TO JUDY HUMAN.
MANY OF YOU KNOW OF JUDY.
SHE WAS AN INTERNATIONALLY
CELEBRATED CIVIL RIGHTS ADVOCATE
FOR THE DISABILITY COMMUNITY.
SOMETIMES REFERRED TO AS THE
MOTHER OF THE DISABILITY RIGHTS
MOVEMENT.
AND UNFORTUNATELY SHE PASSED
AWAY IN MARCH.
BEFORE I INTRODUCE OUR KEYNOTE
SPEAKER, I WOULD LIKE TO MAKE A
REQUEST ABOUT LANGUAGE.
LANGUAGE IS AROUND IDENTITY IS
PERSONAL.
SPEAKERS AND AUDIENCE MEMBERS
WILL HAVE THEIR OWN PERSONAL
PREFERENCES.
IN THIS CONFERENCE WE WERE USE
THE TERM "PERSON WITH A
DISABILITY," AS WELL AS"
DISABLED PERSON" BECAUSE THAT'S
HOW PEOPLE HAVE SELF-IDENTIFIED
USING BOTH OF THOSE TERMS.
IS ASK THAT WE ARE CIVIL, THAT
WE HAVE A SAFE ENVIRONMENT FOR
PEOPLE TO SHARE DIFFERENCES OF
OPINION ARE INEVITABLE BUT THEY
CAN BE EXPRESSED RESPECTFULLY.
WITH ALL THAT, IT IS MY ABSOLUTE
PLEASURE TO INTRODUCE BONNIE
SWENOR, Dr. SWENOR IS AN
ASSOCIATE PROFESSOR AT JOHNS
HOPKINS SCHOOL OF NURSING,
MEDICINE, AND PUBLIC-HEALTH AND
ONE OF THE FOUNDER AND DIRECTOR
OF JOHNS HOPKINS DISABILITY
HEALTH RESEARCH CENTER WHICH
AIMS TO SHIFT THE PARADIGM FROM
LIVING WITH A DISABILITY TO
THRIVING WITH A DISABILITY.
MOTIVATED BY HER PERSONAL
EXPERIENCES WITH VISUAL
DISABILITIES, HER WORK TAKES A
DATA-DRIVEN APPROACH TO
ADVANCING HEALTH EQUITY FOR
PEOPLE WITH DISABILITIES AND
PROMOTING DISABILITY INCLUSION
AND HIGHER EDUCATION, STEM,
PUBLIC-HEALTH, AND RESEARCH.
-- STEMM.
TAKE IT AWAY, BONNIE.
>>Bonnielin Swenor: THANK YOU
FOR THAT WONDERFUL INTRODUCTION
AND DESCRIPTION OF THE
CONFERENCE, THERESA.
I'M BONNIELIN SWENOR AND MY
VISUAL DESCRIPTION IS I AM A
MIDDLE-AGED WHITE WOMAN WITH
SHOULDER-LENGTH BLOND HAIR
SITTING IN MY OFFICE IN
BALTIMORE.
I WANT TO FIRST SAY, THANK YOU
TO EVERYONE WHO ORGANIZED THIS
IMPORTANT CONVERSATION AND
CONFERENCE AND NIH FOR HOSTING
THIS INAUGURAL DISCUSSION ON
ABLEISM AND TO ECHO Dr. CRUZ'S
SENTIMENT, HOPEFULLY NOT TO BE
THE LAST.
I ALSO TO EXTEND MY GRATITUDE TO
MY PANELISTS ABOUT ABLEISM,
DISABILITY AND INCLUSION,
ACCESSIBILITY.
I'M SO GRATEFUL FOR ALL OF THEIR
WORK AND SO MANY OTHERS WHO ARE
DEDICATED TO MAKING PROGRESS FOR
OUR DISABILITY COMMUNITY.
I AM TRULY HONORED TO BE OPENING
THIS DISCUSSION AND FOR THOSE OF
YOU WHO KNOW ME, IT'S NO
SURPRISE WITH A CALL TO ACTION.
I WANT TO START BY ASKING YOU
ALL TO THINK ABOUT DISABILITY.
TO THINK ABOUT THAT WORD, HOW
YOU DEFINE IT.
WHAT THAT WORD MEANS TO YOU.
AND IF THAT WORD BRINGS ABOUT
FEELINGS THAT ARE POSITIVE,
NEGATIVE, OR EVEN NEUTRAL.
WHILE YOU ARE THINKING ABOUT
THAT, THINK ABOUT WHO ARE THE
EXPERTS IN DISABILITY.
DOCTORS, NURSES, RESEARCHERS,
REHABILITATION EXPERTS,
CAREGIVERS.
WHO HAVE WE HISTORICALLY GONE TO
FOR EXPERTISE ON PEOPLE WITH
DISABILITIES?
AND WHILE YOU ARE THINKING ABOUT
THAT, ASK YOURSELF IF YOU
IMAGINE THOSE INDIVIDUALS DO
THEY THEMSELVES HAVE
DISABILITIES?
AND IF NOT, WHY NOT.
SO I ASKED THESE QUESTIONS AT
THE START TO CHALLENGE LONG
HEALTH STEREOTYPES ABOUT
DISABILITY IN RESEARCH IN
MEDICINE AND ACROSS SOCIETY AND
DURING THIS CONFERENCE,
ANTIQUATED VIEWS OF DISABILITY
WILL BE CHALLENGED.
FOR SOME THIS IS UNCOMFORTABLE
AND NEW AND FOR OTHERS THIS WILL
SEEM LONG OVERDUE.
REGARDLESS OF WHERE YOU ARE IN
THAT JOURNEY, I HOPE YOU COME TO
THIS CONVERSATION READY TO FIND
NEW WAYS TO SUPPORT EQUITY AND
JUSTICE FOR ALL OF US.
FOR EVERYONE IN SOCIETY.
AS Dr. CRUZ INDICATED THE TERM
ABLEISM IS NOT A ANY ONE.
BUT IT'S OFTEN NEW TO MANY.
THE FOLLOWING SESSION WILL
DISCUSS THIS CONCEPT DEEPLY,
WHICH THANKFULLY HAS GOTTEN MORE
ATTENTION.
A RECENT "WASHINGTON POST"
ARTICLE THAT DESCRIBED ABLEISM
AS BEING ROOTED IN THE
ASSUMPTION THAT NON DISABLED
PEOPLE ARE THE IDEAL.
IT'S A GREAT ARTICLE AND IT HAD
A QUIZ ASSOCIATED IN IT.
FOR ANYONE INTERESTED, I SUGGEST
YOU NAVIGATE TO IT.
BUT THIS DEFINITION, THAT NON
DISABLED PEOPLE ARE THE IDEAL,
REALLY OUTLINES HOW ABLEISM
SHAPES AND UNDERLIES OUR VIEWS
OF HEALTH.
IT'S SUCH A DEEPLY EMBEDDED
CONCEPT ACROSS SOCIETY,
ESPECIALLY IN MEDICINE,
PUBLIC-HEALTH AND BIOMEDICAL
RESEARCH.
AND IT'S ONE THAT WE HAVEN'T
CHALLENGED ENOUGH.
ABLEISM IS EVERYWHERE.
IT'S INSTITUTIONALIZED AND
STRUCTURAL IN OUR BELIEVING AND
ENVIRONMENTS AND IT CAN BE
INTERNALIZED.
EVEN WITHIN DISABLED PEOPLE.
ON THE SLIDE, I'M SHOWING AN
IMAGE OF AN ESCALATOR AT A D.C.
METRO STOP IS WHERE MY OWN
PERSONAL JOURNEY WITH DISABILITY
BEGAN ALMOST 20 YEARS AGO.
THIS WAS THE EXPECT SPOT WHERE I
HAD A SUDDEN LOSS OF VISION THAT
LED TO A DIAGNOSIS AND CONTINUED
VISION LOSS OVER THAT TIME.
BACK THEN, ALL I KNEW ABOUT
DISABILITY IS WHAT SOCIETY
TAUGHT ME.
IT WAS BAD AND LIFE WAS OVER.
I NEEDED TO BE ASHAMED AND GIVE
UP.
I SHOULD STOP PURSUING MY GOALS
OF BEING A RESEARCHER.
AT THAT MOMENT, I HAD JUST
APPLIED TO GRADUATE SCHOOL.
THESE WERE THE TYPES OF MESSAGES
THAT I WAS RECEIVING DIRECTLY
FROM FRIENDS AND FAMILY AND
INDIRECTLY, THROUGH THE
EXCLUSION OF THIS INACCESSIBLE
WORLD AND THE LACK OF
REPRESENTATION OF PEOPLE LIKE ME
IN SCIENCE AND RESEARCH.
I BATTLE ABLEISM EVERY SINGLE
DAY AND HAVE SINCE THEN.
SO DO SO MANY PEOPLE WITHIN THE
DISABILITY COMMUNITY.
I PERSONALLY BATTLE IT WITHIN
MYSELF.
I STILL FIGHT AGAINST THE DEEPLY
INGRAINED NEGATIVE VIEWS OF
DISABILITY THAT I'VE
INTERNALIZED AND SOMETIMES BRING
ME FEELINGS OF SHAME.
I BATTLE ABLEISM IN MY CAREER AS
A RESEARCH ECOSYSTEM, EXCLUDES
DISABLED PEOPLE AT EVERY LEVEL.
I BATTLE ABLEISM IN SOCIETY
THROUGH MY WORK AND MY ADVOCACY
AS MANY DO, WHICH IS MY CHOICE,
BUT IS ALSO AN ACT OF SURVIVAL.
BECAUSE DISABILITY IS SO COMMON,
ABLEISM MUST BE CONSIDERED A
FORMIDABLE THREAT TO EQUITY, TO
RESEARCH, TO MEDICINE, FOR EVERY
ONE OF US.
ONE OF FOUR AMERICAN ADULTS OR
67 MILLION PEOPLE HAVE A
DISABILITY.
THIS MEANS THAT THE WAYS IN
WHICH WE STUDY CARE FOR AND
INCLUDE DISABLED PEOPLE MATTERS.
AND IMPACTS A LARGE PERCENTAGE
OF OUR POPULATION.
NIH'S FOCUS IS ON ADVANCING
HEALTH AND HEALTH EQUITY.
TO DO THAT, ABLEISM MUST BE PART
OF ALL OF THOSE EFFORTS.
AS ABLEISM IS A ROOT CAUSE OF
THE HEALTH INEQUITIES FOR
DISABLED PEOPLE, AND DISABLED
PEOPLE ARE THE LARGEST MINORITY
GROUP IN THE UNITED STATES.
ON THIS SLIDE, I'M SHOWING
EVIDENCE OF THOSE HEALTH
DISPARITIES AND INEQUITIES THAT
DISABLED PEOPLE FACE.
THIS IS WORK FROM GLORIA CRON
AND HER COLLEAGUES ON A LANDMARK
PAPER THAT HELPED FRAME PEOPLE
WITH DISABILITIES AS A HEALTH
DISPROPORTIDIS PARTATION POPULA.
IT'S RESULT THAT'S SHOW PEOPLE
WITH DISABILITIES HAVE A HIGHER
PERCENTAGE OF SMOKERS, PEOPLE
NOT ENGAGING IN PHYSICAL
ACTIVITY, OF CARDIOVASCULAR
DISEASE, OR OBESE.
THAT ARE HIGHER PERCENTAGE OF
PEOPLE WITH DISABILITIES ARE NOT
RECEIVING THE MEDICAL CARE THAT
THEY NEED DUE TO COST AND A
HIGHER PERCENTAGE OF WOMEN WITH
DISABILITIES ARE NOT UP-TO-DATE
WITH MR. MAMMOGRAMS AND THEIR
PAP TESTS.
BUT ADDITIONALLY, WE MUST
CONSIDER HOW FACTORS LIKE SOCIAL
DETERMINANTS OF HEALTH IMPACT
THE HEALTH -- ACCESS TO
HEALTHCARE AND HEALTH EQUITY OF
DISABLED PEOPLE.
THIS SLIDE I'M SHOWING ANOTHER
BAR GRAPH FROM RECENT DATA FROM
MY CENTER, INDICATING A HIGHER
PERCENTAGE OF PEOPLE WITH
DISABILITIES HAVE LESS THAN A
HIGH SCHOOL EDUCATION, HAVE A
LOW HOUSEHOLD INCOME, WHICH IS
LESS THAN $25,000 PER YEAR IN
THIS ANALYSIS, AND ARE
UNEMPLOYED.
IT'S ALSO CRITICAL TO NOT
EXAMINE DISABILITY IN A VACUUM.
DISABILITY INEQUITIES OPERATING
THROUGH AN INTERSECTIONALITY
APPROACH RECOGNIZES THAT THERE'S
A MA MAG N MAG INDICATION OF PED
I'M SHOWING DATA FOR PEOPLE WITH
DISABILITIES FROM RACIAL AND
ETHNIC MINORITIES GROUPS AS THEY
HAVE THE HIGHEST PERCENTAGE OF
DISABILITY IN COMPOUNDING
INEQUITIES.
PEOPLE WITH DISABILITIES WHO ARE
BLACK AND HISPANIC, HAVE A
HIGHER PERCENTAGE OF HAVING A
HIGH SCHOOL EDUCATION, OF LESS
THAN HIGH SCHOOL, HAVE A LOW
HOUSEHOLD INCOME, AND A HIGHER
PERCENTAGE OF BEING UNEMPLOYED.
AT ITS CORE ABLEISM HAS A
UNDERLYING HIERARCHY TO HUMAN
HEALTH.
THAT SOCIETY A SCIENCE.
THIS HIERARCHY IS WHERE NON
DISABLED PEOPLE HOLD MORE
SOCIETAL VALUE.
IT IS SHOCKING HOW THAT VIEW HAS
GONE UNCHECKED FOR SO LONG AND
STILL GRIPS SO MUCH OF CLINICAL
RESEARCH AND MEDICINE.
IT STILL SHAPES THE WORK WE DO,
THE MEASURES WE DEVELOP, AND THE
OUTCOMES THAT WE VALUE.
ON THIS SLIDE, I'M SHOWING A
PREVIEW OF SOME WORK FROM THE
AMAZING LISA IEZZONI WHO WILL
WRAP-UP THIS CONFERENCE.
THIS IS A GRAPHIC DEVELOPED BY
ANOTHER COLLEAGUE, Dr. CARA
ERRORS AND HER TEAM SUMMARIZING
LISA'S WORK.
THIS INDICATES THAT 82% OF
PHYSICIANS BELIEVE THAT PEOPLE
WITH DISABILITIES HAVE A WORSE
QUALITY OF LIFE.
ONLY 40% OF PHYSICIANS AND Dr.
IEZZONI'S SURVEY AND ONLY 56%
STRONGLY AGREED THAT THEY WOULD
WELCOME DISABLED PATIENTS INTO
THIS PRACTICE.
I WANT TO PAUSE HERE BECAUSE I
KNOW THE IDEA THAT PEOPLE WITH
DISABILITIES HAVING A WORSE
QUALITY OF LIFE SOMETIMES JUST
MEANS A MOMENT OF REFLECTION.
THAT HAS BEEN A VIEW THAT HAS
GONE UNCHECKED AND SOMETIMES
WHEN I SAY THAT, PEOPLE THINK,
WELL, OF COURSE, THEY'RE
DISABLED.
BUT THAT IS THE EXACT CONCEPT
THAT THIS CONFERENCE IS GOING TO
CHALLENGE AND DISCUSS.
THAT IDEA IS NOT HELD BY MANY
PEOPLE WITH DISABILITIES AND WE
NEED TO CRITICALLY EXAMINE IT.
AND THE WAYS IT PLAYS OUT IN
HEALTHCARE AND DRIVES INEQUITIES
IS IMPORTANT TO UNDERSTAND AND
ADDRESS.
ON THIS SLIDE IS MORE ELEVATION
OF Dr. IEZZONI'S WORK.
HER WORK WAS WRITTEN UP IN A
"NEW YORK TIMES" ARTICLE AND I'M
SHOWING AN IMAGE OF THAT AND
LISA AND COLLEAGUES HAD SOME
ADDITIONAL QUALITATIVE RESEARCH
THAT WENT ALONG WITH THAT
QUANTITIVE WORK I JUST
DESCRIBED.
AND NO AN -- THEY SAID GO TO AN
ELEVATOR, CATTLE PROCESSING
PLANT OR A ZOO TO BE WEIGHED.
A ZOO TO BE WEIGHED.
IT'S A PROFOUND TO THINK ABOUT
THAT AS BEING A REQUEST TO
OBTAIN WHICH IS A CRITICAL
ASSESSMENT MEASUREMENT OBTAINED
IN ALMOST EVERY HEALTHCARE
VISIT.
ABLEISM, GOES DEEPER THAN JUST
THE RESEARCH AND THE CARE
PROVIDED TO PEOPLE WITH
DISABILITIES.
IT IMPACTS THE TEAMS DOING THE
WORK.
AND THESE THINGS OF COURSE ARE
INTER LOCKED.
ALTHOUGH, MORE THAN ONE AND FOUR
AMERICAN ADULTS HAVE THE
DISABILITY, PEOPLE WITH
DISABILITIES ARE DRASTICALLY
UNDER REPRESENTED IN MEDICINE
AND IN RESEARCH.
AND I HOPE THAN THIS CONFERENCE
WILL HELP ELEVATE THAT AND START
TO DO WORK TO CHANGE THAT.
NEXT SLIDE.
I'M SHOW A BAR GRAPH OF THE
INCLUSION OF PEOPLE WITH
DISABILITIES ACROSS HIGHER
EDUCATION AND ACADEMIA AND STEMM
CAREERS.
IT'S SHOWING THAT 19% OF
UNDERGRADUATE STUDENTS IN STEMM
FOCUSED AREAS REPORT HAVING A
DISABILITY ONLY 9% OF DOCTORAL
STUDENTS DROPS TO 8% OF POSTDOCS
AND 8% ASSISTANT PROFESSOR.
THERE'S AN INCREASE OF THE
PERCENTAGE OF ASSOCIATE AND FULL
PROFESSORS WITH DISABILITIES AT
10% AND AND A DECLINE TO 8% OF
LEADERS IN ACADEMIC SPACES,
DEANS, CHAIRS, DEPARTMENT
DIRECTORS, PRESIDENTS, PROVOSTS
AND CHANCELLOR SO THIS SLIDE
SHOWS A UNDER REPRESENTATION OF
THE 27% OF PEOPLE WITH
DISABILITIES, ADULTS WITH
DISABILITIES IN THE UNITED
STATES.
IT ALSO SHOWS THAT THERE'S AN
UNDER REPRESENTATION ACROSS THE
PATHWAY OF STEM TRAINING.
AND OF STEM LEADERSHIP AND
ACADEMIC SPACES.
ON THIS SLIDE, I'M SHOWING THE
AMAZING WORK OF MY FRIEND AND
COLLEAGUE LISA MEEKS FROM THE
UNIVERSITY OF MICHIGAN.
SHE DEDICATED HER CAREER TO
UNDERSTANDING AND ELEVATING THE
GAPS AND MEDICAL TRAINING FOR
STUDENTS IN LEARNERS WITH
DISABILITIES.
AND THIS WORK IT IS SHOWING THE
PERCENTAGE OF MEDICAL STUDENTS
REPORTING DISABILITIES HAS
INCREASED FROM 2.7% IN 2016 TO
4.6% IN 2019 BUT THAT IS STILL
REMAINS ABYSMALLY LOW.
THIS IS ALSO WORK FROM Dr.
MEEKS' TEAM.
SHOWING THE PERCENTAGE OF
CURRENTLY PRACTICING PHYSICIANS
WHO REPORT HAVING A DISABILITY,
WHICH IS ONLY 3%.
BASED ON A NATIONAL SURVEY.
AND LISA AND I TEAMED UP
TOGETHER TO EXAMINE THE
REPRESENTATION OF PEOPLE WITH
DISABILITIES IN THE BIOMEDICAL
WORKFORCE.
WE DID THIS BY USING DATA ON THE
REPRESENTATION OF NIH PRINCIPAL
INVESTIGATORS WHO REPORTED
HAVING A DISABILITY OVER THE
DECADE FROM 2008 TO 2018.
AND WHAT ARE DATA SHOWED IS THAT
PERCENTAGE OF P.I.s WITH
DISABILITIES PRINCIPAL
INVESTIGATORS, DECLINED FROM
1.9% TO 1 TRACTOR-TRAILER 2%
OVER THAT TIME.
THAT PERCENTAGE, LESS THAN 2% IS
AGAIN ABYSMALLY LOAD COMPARED TO
THE POPULATION PREVALENCE OF
27%.
THERE IS A RECENT UPDATE ON THIS
DATA USING A VERY SIMILAR
APPROACH AND ANALYSIS IN A BLOG
FROM MIKE LAUER FROM THE NIH.
THIS EXTENDED THE PERIOD OF
EXAMINATION OF THE DATA FROM
2008 TO 2022 AND THE PERCENTAGE
PIs SELF-REPORT NORTH
DISABILITY DECREASED FROM 2% TO
1.3% IN 2022.
THOSE RESULTS HELD ALL THE WAY
THROUGH 2022.
ADDITIONALLY, IT'S IMPORTANT TO
UNDERSTAND THE UNDER
REPRESENTTATION OF PEOPLE WITH
DISABILITIES IN OPPORTUNITIES
FOR FUNDING BEYOND PRIMARY
GRAPHS SUCH AS DIVERSITY STANELE
SUPPLEMENTS.
THIS IS DATA SHOWING THAT OVER
1,000 APPLICANTS ON DIVERSITY
SUPPLEMENTS, 1,100, ONLY 34 WERE
FROM PEOPLE WITH DISABILITIES.
LESS THAN 3%.
NOW THESE DIVERSITY SUPPLEMENTS
ARE OPPORTUNITIES TO INCLUDE
DISABLED RESEARCHERS IN NIH
FUNDED RESEARCH.
BUT CERTAINLY THEY'RE NOT BEING
UTILIZED.
ADDITIONALLY, THERE WAS DATA
FROM AN NIH WORKPLACE CLIMATE
AND HARASSMENT SURVEY RELEASED
IN 2020 INDICATING THAT 30% OF
PEOPLE WITH DISABILITIES WORKING
AT THE NIH REPORTED SEXUAL
HARASSMENT IN THE PAST YEAR.
NOW SEXUAL HARASSMENT IS NOT
SOMETHING OFTEN ASSOCIATED WITH
DISABILITIES, BUT PEOPLE WITH
DISABILITIES FACE ALL TYPES OF
HARASSMENT AND BARRIERS AND
SEXUAL HARASSMENT, IS ONE OF
THOSE ISSUES.
WE ARE AT A MOMENT OF CHANGE.
I SHARE ALL THAT DATA, NOT TO
PROVIDE A HUGE DOSE OF
NEGATIVITY, BUT INSTEAD A DOSE
OF REALITY.
AND AT THIS MOMENT, I THINK WE
ALL HAVE AN INFLECTION POINT TO
RESPONDED TO.
WE HAVE A ONCE IN A GENERATION
OPPORTUNITY.
RECENTLY,RERECENTLY WE PUBLISHEA
COMMENTARY.
IT WAS LED BY Dr. KENNEDY AND
WE WROTE THE LATE BOBBIE SILVER
STEEN, A LIFELONG DISABILITY
ACTIVIST AND EXCEPTIONAL
POLITICAL STRATEGIST DESCRIBED
E.O., EXECUTIVE ORDER 13985 AND
THE CURRENT NIH DEIA DIVERSITY,
EQUITY AND INCLUSION AND
ACCESSIBILITY EFFORTS, AS A ONCE
IN A GENERATION OPPORTUNITY.
TO REFORM FEDERAL RESEARCH
POLICY AND PROGRAMMING ON
DISABILITIES.
WE ALL HAVE A CHANCE AT MAKING
CHANGE.
THOSE EXECUTIVE ORDERS I JUST
DESCRIBED I'M OUTLINING ON THIS
SLIDE.
THE FIRST, IS ADVANCING RACIAL
EQUITY AND SUPPORT FOR
UNDERSERVED COMMUNITIES THROUGH
THE FEDERAL GOVERNMENT.
THIS EXECUTIVE ORDER WAS SIGNED
ON THE FIRST DAY OF PRESIDENT
JOE BIDEN'S TERM AND PROVIDES AN
OPPORTUNITY TO MAKE CHANGE FOR
THE DISABILITY COMMUNITY AS WELL
AS MANY OTHER COMMUNITIES FACING
OPPRESSION BY LEVERAGING THE
FEDERAL GOVERNMENT TO DRIVE
SOCIAL CHANGE.
ADDITIONALLY, THE EXECUTIVE
ORDER DIVERSITY EQUITY AND
INCLUSION AND ACCESSIBILITY IN
THE FEDERAL WORKFORCE MAKES IT
CLEAR THAT ACCESSIBILITY AND
PEOPLE WITH DISABILITIES SHOULD
BE PART OF ALL DIVERSITY, EQUITY
AND INCLUSION.
SO RELATED TO THAT FACT, THE NIH
CREATED A WORKING GROUP ON
DIVERSITY, SUBGROUP ON
INDIVIDUALS WITH DISABILITIES
ABOUT 18 MONTHS AGO.
THIS WAS A WORKING GROUP
DEVELOPED UNDER THE NIH ACD
WHICH STANDS FOR THE ADVISORY
COMMITTEE TO THE DIRECTOR.
I WAS GRATEFUL TO CO-CHAIR 24
COMMITTEE WITH LISA AND STEVE
BARNETT.
ON THE SLIDE I'M LISTING ARE
COMMITTEE MEMBERS, WHICH
INCLUDED KIM ANDERSON, THERESA
CRUZ, ALBERTO, JEAN HALL, SUSAN
HALFERCAMP, KATHLEEN MANKEEPSKI,
DAVID RICE, AND PHILLIP ZAZOF.
THIS WAS WAS AN AMAZING
COMMITTEE AND WE MET JUST OVER A
PERIOD OF A YEAR TO DEVELOP
RECOMMENDATIONS AROUND
INCREASING THE INCLUSION OF
PEOPLE WITH DISABILITIES IN THE
BIOMEDICAL WORKFORCE AS OUR
PRIMARY CALL WHICH WE EXTENDED
TO INCLUDING PEOPLE WITH
DISABILITIES IN RESEARCH.
I WANT TO GIVE THANKS TO THE
COSWD OFFICE AND Dr. MURRAY
BERNARD AND HER TEAM WHO WORKED
CLOSELY WITH US IN THE WORK OF
THIS COMMITTEE AND DEVELOPING
OUR RECOMMENDATIONS.
NEXT SLIDE.
I WANT TO JUST QUICKLY REVIEW
OUR RECOMMENDATIONS WHICH TRULY
ARE REMARKABLE AND WE BELIEVE
ARE A LANDMARK OPPORTUNITY FOR
CHANGE.
OUR RECOMMENDATIONS SPAN FIVE
AREAS.
THEY INCLUDE OF RECOMMENDATIONS
AROUND ANTI ABLEISM
COMMUNICATION AND POLICIES AND
COORDINATION OF EFFORTS AROUND
AREAS OF DISABILITIES, FOCUS ON
DISABILITY INCLUSION, DISABILITY
EQUITY RESEARCH, AND
ACCOUNTABILITY.
NOW I WANT TO JUST CAUSE PEER
AND MAKE SURE THAT OUR
RECOMMENDATIONS AND OUR REPORT
HAVE BEEN RELEASED.
WERE RELEASED LAST DECEMBER AND
WERE ENDORSED BY THE NIH ACD AND
THEY'RE BEING CONSIDERED BY AN
NIH LEADERSHIP OF WHAT AND HOW
AND ADOPT OF THOSE NEXT SLIDE.
THE RECOMMENDATIONS UNDER ANTI
ABLEISM, COMMUNICATION AND
POLICIES WE MADE A REQUEST TO
UPDATE THE MISSION STATEMENT OF
THE NIH THROUGH MOVE THE
COMPONENT OF REDUCING
DISABILITY.
WE VIEWED THIS AS AN OPPORTUNITY
TO MAKE A STATEMENT AND AROUND
SETTING A TONE OF MAKING THE NIH
MORE DISABILITY INCLUSIVE.
THE CONCEPT OF REDUCING
DISABILITY IS NOT ONE WELL
APPRECIATED WITHIN THE
DISABILITY COMMUNITY AND
PROMOTES AN IDEA THAT DISABILITY
IS NEGATIVE AND SHOULD BE
ELIMINATED.
WE ALSO MADE SUGGESTIONS AROUND
REVIEWING POLICIES, CULTURES AND
STRUCTURES THAT PROMOTE
DISABILITY AND INCLUSION ACROSS
THE NIH.
OUR RECOMMENDATIONS MADE
SUGGESTIONS AROUND COORDINATED
EFFORTS SUCH AS ESTABLISHING AN
NIH OFFICE OF DISABILITY
RESEARCH THAT WOULD SPAN THE NIH
TO SUPPORT THIS TYPE OF
COORDINATION OF RESEARCH FOCUSED
ON DISABILITY AND EFFORTS
RELATED TO DISABILITY INCLUSION
AND TO DEVELOP EFFORTS TO COMBAT
STRUCTURAL ABLEISM INSIDE AND
OUTSIDE THE NIH INCLUDING IN
FUNDED RESEARCH INSTITUTIONS.
WE HAD A FOCUS BY ESTABLISHING A
NIH DISABILITY EQUITY AND ACCESS
COORDINATING COMMITTEE AND TO
FIND WAYS TO IMPROVE THE
INCLUSION OF DISABLED PEOPLE IN
NIH EFFORTS INCLUDING PEOPLE IN
RESEARCH AS WELL AS OUTSIDE OF
RESEARCH.
TO ENSURE THE PERSPECTIVE OF THE
DISABILITY COMMUNITY ARE PART OF
NIH DECISION-MAKING.
NEXT SLIDE.
WE ALSO HAD A FOCUS ON
DISABILITY EQUITY AND HOW
RESEARCH CAN PROMOTE THAT.
THERE'S AN IMPORTANT FOCUS ON
PROVIDING THE DESIGNATION OF NOT
A HEALTH DISPARITY POPULATION TO
PEOPLE WITH DISABILITIES.
THIS DESIGNATION IS CRITICAL FOR
PROVIDING THE FUNDING NEEDED TO
ADDRESS THE HEALTH DISPARITIES
THAT WE KNOW EXIST THAT THERE'S
MOUNTAINS OF EVIDENCE BEHIND.
WITHOUT THIS DESIGNATION, WE
REEL ARE AT A STAND STILL FROM
FUNDING OPPORTUNITIES TO MOVE
FORWARD HEALTH EQUITY FOR PEOPLE
WITH DISABILITIES.
WE ALSO MADE RECOMMENDATIONS
AROUND INCREASING FUNDING FOR
RESEARCH FOCUSED ON DISABILITY
EQUITY PROMOTING DISABILITY
COLLECTION AND INCLUDING MORE
DISABLED PEOPLE IN RESEARCH
STUDIES.
AND AS IMPORTANT COMPONENT, WE
INCLUDE AID FOCUS O ON
ACCOUNTABILITY.
THERE'S RECOMMENDATIONS TO HAVE
CONTINUOUS AND TRANSPARENT
PRACTICES OF PUBLIC SHARING OF
ACCESSIBLE DATA ON THE
RECOMMENDATIONS THAT WERE BEING
MADE.
THIS IS THROUGH A BELIEF THAT
THROUGH INFORMATION SHARING WITH
THE PUBLIC THAT THE PRACTICES
WOULD CONTINUE AND IMPROVE OVER
TIME.
PROVIDING AN OPPORTUNITY FOR THE
COMMUNITY TO CONTINUE TO WORK
TOGETHER WITH THE NIH TO MAKE
CHANGED.
I AM GRATEFUL THAT MANY OF THESE
RECOMMENDATIONS HAVE BEEN
REFLECTED AND THE LATEST
NIH-DEIA STRATEGIC PLAN JUST
RECENTLY RELEASED FROM THE COSWD
OFFICE.
IT CERTAINLY IS A REMARKABLE
MOMENT FOR MANY OF US IN THE
DISABILITY COMMUNITY, WHO ARE ON
THIS COMMITTEES AND WHO HAVE
BEEN DOING THIS WORK.
AS Dr. CRUZ OPENED THIS
CONFERENCE WITH, THE CERTAINLY
HAS BEEN A LONG TIME COMING AND
I HAVE TO EXPRESS MY DEEPEST
GRATITUDE TO EVERYONE INVOLVED
IN THIS EFFORT ON THIS COMMITTEE
AND WHO DID THE WORK TO GET TO
US WHERE WE ARE TODAY.
CERTAINLY THE WORK IS STILL NOT
OVER.
THIS CERTAINLY FEELS LIKE AN
INFLECTION POINT.
THE CALL TO ACTION IS WHERE I
WANT TO END.
I WANT EVERYONE IN THIS AUDIENCE
TODAY TO CONSIDER WAYS THAT WE
CAN BRING A LENS OF ANTI ABLEISM
TO MEDICAL RESEARCH, BIOMEDICAL
RESEARCH.
WE CERTAINLY ALL HAVE A ROLE TO
PLAY AND A RESPONSIBILITY.
WHETHER YOU ARE IN THE
DISABILITY COMMUNITY OR NOT,
WHETHER YOU THINK YOU ARE DOING
DISABILITY RESEARCH OR NOT.
IT'S ALSO IMPORTANT WE
PARTICIPATE IN EFFORTS TO
ADVANCE DISABILITY CAN EQUITY.
ABLEISM IS A FORMIDABLE THREAT
TO HEALTH EQUITY AND DIVERSITY
AND UNLESS WE TACKLE ABLEISM, WE
WILL NEVER GET TO THOSE GOALS.
WE MUST INCLUDE DISABLED PEOPLE
IN OUR EFFORTS.
PEOPLE ARE PART OF OUR
COMMUNITIES AND GENDER IDENTITY
AND FAR BEYOND AND ALL ISSUES,
ARE DISABILITY ISSUES THERE'S NO
SUCH THING AS SPECIAL
DISABILITIES ISSUES ALONE.
CLIMATE CHANGE, GENOMICS, CANCER
TREATMENT, ALL ARE DISABILITY
ISSUES.
IT'S ALSO IMPORTANT TO NOT WAIT
TO TAKE ACTION.
SUCCESS COMES FROM WHEN WE
APPROACH THIS WORK WITH HUMILITY
AND A GROWTH MIND SET WE'RE ALL
LEARNING AND WE'RE ALL
PROCESSING AND UNDERSTANDING
THIS IS A JOURNEY AND THERE'S
REALLY NEVER GOING TO BE AN END
TO THIS WORK AND IT'S A PRACTICE
WE MUST ALL DO EVERY DAY.
AND WITH THAT, WE'LL MOVE OVER
TO QUESTIONS AND THANK YOU
EVERYONE FOR ATTENDING.
>>THANK YOU SO MUCH, BONNIE.
CAN I GET ON THE SCREEN.
>>Theresa Cruz: THERE WE GO.
THANK YOU.
THAT WAS FABULOUS.
WE HAVE FIVE OR SIX MINUTES FOR
QUESTIONS AND THERE'S A LOT OF
CHATTER IN THE Q&A.
YOU HAVE BEEN VERY OPEN ABOUT
YOUR OWN DISABILITIES STATUS.
THERE ARE QUESTIONS ABOUT HOW
PEOPLE CAN DISCLOSE IN A SAFE
AND SUPPORTIVE WAY OR NOT
DISCLOSE AS THEY SO CHOSE.
COULD YOU TALK A LITTLE BIT
ABOUT YOUR PERSPECTIVE ON
DISCLOSURE OF A DISABILITY?
>
>>Bonnielin Swenor: YEAH, SURE.
THIS IS SOMETIMES A TOUGH
QUESTION, RIGHT, FOR FOLKS.
AND I JUST WANT TO START BY
SAYING I DON'T THINK EVERYONE IS
IN A PLACE TO FEEL SAFE TO
DISCLOSE AND THAT'S
UNFORTUNATELY ABOUT THE REALITY
OF THE WORLD TODAY, THAT I HOPE
CAN CHANGE.
I AM GRATEFUL ENOUGH TO BE IN A
SPACE WHERE I CAN DISCLOSE AND
IT WAS AND HAS BEEN AN EVOLUTION
OVER TIME FOR ME.
I WASN'T OUT ABOUT MY DISABILITY
WHEN I COULD HIDE IT BETTER AND
FOR FEAR THAT PEOPLE WOULD NOT
WANT TO WORK WITH ME.
TO BE HONEST THAT FEAR CAME TRUE
AND THERE WERE NEEM HAVE AND
STILL ARE REFUSED TO WORK WITH
ME BECAUSE THEY KNEW MY VISION
LOSS, MY VISUAL DISABILITY AS
A -- THEY VIEW IT AS A PROBLEM
TO THE DATA SCIENCE TYPE OF WORK
I DO.
THAT'S TOUGH, YOU KNOW.
THAT'S HARD AND UNFORTUNATELY A
REALITY.
AGAIN, I HAVE A WONDERFUL SYSTEM
OF MENTORS AND COLLEAGUES AND
FRIENDS AND FAMILY THAT GIVE ME
THE STRENGTH TO STILL BE OKAY
AND MOVE FORWARD.
I'M ALSO GOTTEN TO A PLACE WHERE
I REALLY WANT CHANGE.
I THINK THAT AS MORE PEOPLE COME
OUT ABOUT THEIR DISABILITY, I
HAVE SEEN THE IMPACT OF THAT.
HOW POWERFUL THAT IS AND HOW
IMPORTANT THAT IS IN CREATING A
SPACE OF MORE WELCOMING
ENVIRONMENT TO BE DISABLED.
THERE'S THIS RIPPLE EFFECT THAT
HAPPENS.
AND SO, THAT HAS COMPELLED ME TO
SPEAK ABOUT MY DISABILITY MORE
BECAUSE I JUST SO DESPERATELY
WANT THIS SYSTEM TO CHANGE.
>>Theresa Cruz: THANK YOU,
BONNIE.
THERE ARE QUITE A FEW QUESTIONS
ABOUT WHETHER NIH INCLUDED
PEOPLE WITH DISABILITIES IN THE
PLANNING OF THIS CONFERENCE.
AND I WILL ANSWER THAT AND SAY,
YES.
AS BONNIE MENTIONED, NOT
EVERYBODY IS IN A PLACE WHERE
DISCLOSURE IS SAFE.
SO I WILL SAY THAT WE TOOK IT
VERY SERIOUSLY, IF PEOPLE WANT
TO DISCLOSE THEIR DISABILITIES,
THEY ARE CERTAINLY ABLE TO BUT
WE ARE NOT GOING TO DO THAT FOR
THEM.
WE HOPE THE DIFFERENT DISABILITY
PERSPECTIVES AND BARRIERS ARE
EVIDENT THROUGHOUT THE COURSE OF
THIS WORKSHOP, BUT I WILL LEAVE
IT AT THAT.
>>Bonnielin Swenor: I WANT TO
MAKE A QUICK COMMENT.
I WANT TO BE REAL CLEAR ABOUT
THE UMBRELLA TERM OF DISABILITY.
AND BEING INTENDED, WHEN I'M
USING IT AND I BELIEVE OUR
COMMITTEE IS USING IT AND WHEN
WE'RE USING IT IN THIS
CONFERENCE IS INCLUSIVE.
CAPITAL B BLINDS AND DEAF
COMMUNITY AND PEOPLE WITH
CHRONIC CONDITIONS.
IT'S A TERM THAT WE ARE USING IN
A WELCOME AND INCLUSIVE WAY AND
I JUST WANT TO MAKE THAT
STATEMENT.
I ALSO WANT TO SAY THAT YOU
KNOW, THE DISABILITY COMMUNITY
IS COMING TO THIS CONVERSATION
WITH A HISTORY OF HARM AND HURT
IN RESEARCH AND I AGREE AND
UNDERSTAND THAT.
AND WITH THAT, COMES, AS I ENDED
MY TALK WITH THE NEED FOR
HUMILITY AND HONEST DISCUSSION.
I WILL JUST SHARE IN OUR
COMMITTEE, I THINK WE HAD THIS
BEAUTIFUL, WONDERFUL FEELING OF
IN THE BEGINNING THERE WAS A LOT
OF THAT AND SKEPTICISM ALMOST,
RIGHT, OF THIS WORK.
BUT AT THE END, I WISH I COULD
SOMEHOW SHARE IT IN A SUCCINCT
WAY.
IT REALLY WAS AN AMAZING PERSON
EXPERIENCE WORKING WITH Dr.
BERNARD AND THE COSWD OFFICE,
REALLY FEELING LIKE THAT WE CAME
TO A PLACE OF TOGETHERNESS ON
THESE ISSUES AND CERTAINLY NOT
ERASING THE HARMS THAT HAVE BEEN
DONE AND HISTORICAL ISSUES BUT
FEELING SEEN AND HEARD AND
VALUED AND NEVER IN MY CAREER
DID I THINK WE WOULD BE THERE.
THERE'S CERTAINLY THERE'S A LOT
OF WORK TO BE DONE.
I WANT TO GIVE SOME HOPE TO THE
DISABILITY COMMUNITY AND YOU
KNOW, AGAIN, REALITY IS WE GOT A
LOT OF WORK TO DO AT THE NIH
BUT, I REALLY FEEL LIKE IT'S AN
IMPORTANT MOMENT OF CHANGE.
>>Theresa Cruz: THANK YOU.
WE ARE AT TIME SO I'LL SAY THANK
YOU ONCE AGAIN TO Dr. SWENOR
FOR THAT CALL TO ACTION, THAT
GREAT START FOR THIS CONFERENCE
AND I WOULD LIKE TO TURN IT OVER
TO MY COLLEAGUE, Dr. LINDA
BAMBRICK A PROGRAM DIRECTOR AND
STROKE TO LEAD OUR FIRST SESSION
ON WHAT IS ABLEISM?
>>THANK YOU, SERIES A AND YOU
KNOW, AGAIN, REALLY TERRIFIC
KICKOFF WONDERFUL START TO THE
WORKSHOP AND YEAH, WELCOME TO
SESSION 1 ON WHAT IS ABLEISM.
IN ADDITION TO MY JOB
DESCRIPTION, WHICH THERESA
OFFERED, MY VISUAL DESCRIPTION
IS I'M MIDDLE AGED BROWN-HAIR
WITH BLACK GLASSES.
AND IT IS MY VERY GREAT PLEASURE
THIS MORNING TO INTRODUCE Dr.
ERIN ANDREWS WHO WILL BE OUR
FIRST SPEAKER IN THIS SESSION.
Dr. ANDREWS IS A BOARD
CERTIFIED REHABILITATION NOT
PSYCHOLOGIST.
SHE'S AN ASSOCIATE A FILL EIGHT
CLINICAL PROFESSOR IN THE
DEPARTMENT OF PSYCHIATRY AND
BEHAVIORAL MEDICINE AT DAL
UNIVERSITSCHOOL AT THE UNIVERSIF
TEXAS AND AUSTIN.
HER AREAS OF INTEREST INCLUDE
DISABILITY IDENTITY, CULTURAL
COMPETENCE, DISABILITY
INCLUSION, IN PSYCHOLOGY
TRAINING, SEXUAL AND
REPRODUCTIVE RIGHTS SO PEOPLE
WITH DISABILITIES, DISABLED
PARENTING, AND REDUCING BIAS AND
DISABILITY AND LANGUAGE.
SHE'S THE AUTHOR OF "DIS ACT IS
DIVERSITY," DEVELOPING CULTURAL
COMPETENCE AND ERIN IS MARRIED
WITH TWO GROWN STEP CHILDREN AND
TWO SCHOOL-AGE CHILDREN AND THEY
ALL LIVE TOGETHER NEAR AUSTIN
EXTENSION TEXT.
SHE IS GOING TO TALK ABOUT
STRUCTURAL ABLEISM AND Dr.
ANDREWS, TURNING IT OVER TO YOU.
>>GREAT, THANK YOU.
ARE FOLKS ABLE TO HEAR ME OKAY?
>>YES, WE CAN HEAR YOU FINE.
>>I'M GOING TO SHARE MY OWN
SLIDES.
>>YES, I BELIEVE SO.
>>I WILL SHARE MY SCREEN NOW.
HOPEFULLY THOSE ARE SHOWING UP
NICELY ON THE SCREEN FOR US.
THANK YOU SO MUCH FOR IN
INVITING ME TO COME AND TALK
TODAY ABOUT THIS IMPORTANT
TOPIC.
TO ORIENT YOU TO MY VISUAL
DESCRIPTION I'M A BLOND-HAIRED
MIDDLE-AGED WOMAN.
MY HAIR IS SHOULDER LENGTH AND
I'M WEARING A PINK TOP AND I AM
WHITE AND I'M GOING TO BE
TALKING ABOUT ABLEISM TODAY AND
I'M CALLING THIS PRESENTATION
THE ICEBERG OF ABLEISM, TO GIVE
US A FRAMEWORK TO THINK ABOUT
IT.
FROM MICRO TO MACROAGGRESSIONS.
I DO WANT TO DISCLOSE MY
DISABILITY IS VERY IMPORTANT TO
ME.
I PROUDLY IDENTIFY AS A DISABLED
WOMAN IN THIS WORLD OF ZOOM, I
DO HAVE TO SELF-DISCLOSE I HAVE
A PHOTO OF ME ON THIS SLIDE IF
YOU WERE TO SEE ME IN-PERSON,
YOU MIGHT NOTICE THAT I AM A
TRIPLE AMPUTEE AND I USE AS
POWER WHEELCHAIR FOR MY
MOBILITY.
SO, OF COURSE I DO NOT AND
CANNOT SPEAK ON BEHALF OF THE
DISABILITY COMMUNITY, I AM
COMING FROM A PLACE OF HAVING
THE LIVED EXPERIENCE.
OKAY.
SO, ONE OF THE THINGS THAT I AM
MOST INTERESTED IN IS DISABILITY
AS A FORM OF DIVERSITY.
WHEN WE LOOK AT DEFINITIONS OF
DIVERSITY ACROSS OUR FIELDS,
WHETHER IT'S MEDICAL, OR
PSYCHOLOGICAL, OR SCIENTIFIC, WE
SEE THE DISABILITIES INCLUDED IN
MOST PROFESSIONAL DEFINITIONS OF
DIVERSITY.
BUT, RARELY IS DISABILITY
ACTUALLY TALKED ABOUT OR
ACTUALLY DISCUSSED IN THINGS
LIKE DIVERSITY, EQUITY AND
INCLUSION EFFORTS.
AND I BELIEVE THAT THE REASON
WHY THIS IS, IS BECAUSE WE TEND
TO VIEW DISABILITY THROUGH THE
MEDICAL MODEL, WHICH I'M GOING
TO TALK ABOUT, AND WE THINK OF
IT AS BEING AN INDIVIDUAL
QUOTE-UNQUOTE PROBLEM INSTEAD OF
THINKING ABOUT DISABILITY AS A
DIVERSE SOCIOPOLITICAL AND
CULTURAL IDENTITY.
SO, TOO OFTEN, WE SEE THAT WHEN
WE DO FOCUS ON DISABILITY, IT'S
RESTRICTED TO CERTAIN ISSUES
SUCH AS ARE WE COMPLIANT WITH
THE ADA BUT THAT MISSES THE MUCH
GREATER CULTURAL CONTEXT IN
WHICH DISABILITY OCCURS.
SO I SAID THAT WE OFTEN THINK
ABOUT DISABILITIES THROUGH THE
MEDICAL MODEL.
THIS HAPPENS EXTENSIVELY IN
MEDICAL SYSTEMS BECAUSE OF
COURSE THAT IS HOW MANY PEOPLE
WERE TRAINED IN ORIENTED INTO
THE FIELD OF MEDICINE.
THE MEDICAL MODEL EMERGED IN THE
EARLY 19th CENTURY AND THE
IDEAS THAT THE PROBLEMS IN THE
MEDICAL MODEL IS SEEN AS A
DISABILITY.
BECAUSE OF THAT, FOCUS TENDS TO
BE ON THE CURE.
AND THAT PLACES THE INDIVIDUAL
INTO THIS SPECIFIC ROLE.
THEY'RE EXCUSED FROM NORMAL
OBLIGATIONS FROM SOCIETY, SUCH
AS, FOR EXAMPLE, WORKING, BUT IN
RETURN THEY ARE EXPECTED TO
SUBMIT TO THE AUTHORITY OF
MEDICAL PROFESSIONALS.
AND WE HAVE SOME EXAMPLES OF
THAT IN OUR WORLD RIGHT NOW,
SUCH AS SOCIAL SECURITY SYSTEM.
I'M NOT EVEN DISABLED BY THEIR
DEFINITION BECAUSE I CAN WORK.
SO IT'S HEAVILY INFLUENCED OUR
PUBLIC POLICIES TODAY.
SO, WE HAVE THE REHABILITATION
MODEL WHICH IS AN OFF CHUTE OF
THE MEDICAL MODEL.
THIS REGARDS PEOPLE WITH
DISABILITIES AS NEEDING SERVICES
IN ORDER TO QUOTE-UNQUOTE
COMPENSCOMPENSATE FOR THEIR DIS.
THIS GAINED TRACTION FOLLOWING
WORLD WAR II BECAUSE SO MANY
VETERANS CAME BACK AND NEEDED
SERVICES.
THERE'S BEEN A LOT OF CRITICISMS
OF THESE MODELS.
SO WE KNOW THAT MEDICAL
INTERCEPTIONS CAN BE IMPORTANT
AND HELPFUL AND HAS A ROLE.
IT'S NOT REALLY THE APPROPRIATE
PLACE FOR DISABILITY POLICY.
MOST DISABILITIES WILL NEVER BE
CURED AND WE KNOW THAT DISABLED
PEOPLE ARE CAPE ABLE OF
PARTICIPATING IN SOCIETY AND
THAT BEING RELEGATED TO THE SICK
ROLE IS NOT ACCEPTABLE.
SO, REHABILITATION CAN BE
HELPFUL TOO, BUT IT MAY NOT BE
APPLICABLE ACROSS THE LIFESPAN
OR TO DIFFERENT TYPES OF
DISABILITIES.
AND OFTEN TIMES, THE SENSE OF
OVERCOMING OR COMPENSATING CAN
FEEL VERY PATRONIZING TO THOSE
OF US WITH DISABILITIES.
SO, NEXT WHAT WE SAW WAS THE
EMERGENCE OF THIS SOCIAL MODEL
AND THE SOCIAL MODEL DESCRIBES
DISABILITY AS A NEUTRAL,
CHARACTERISTIC AND THE PROBLEM
WAS NO LONGER VIEWED AS THE
INDIVIDUAL OR THEIR IMPAIRMENT
BUT RATHER THE SOCIAL MODEL ARE
THESE THAT DISABILITY IS A
SOCIAL CONSTRUCTION, RIGHT.
AND THE FOCUS BECAME, INSTEAD OF
ON THE INDIVIDUAL, ON EX TERNAL
BARRIERS, WHAT ARE THE PHYSICAL
OBSTACLES TO THIS PERSON BEING
ABLE TO PARTICIPATE FULLY?
WHAT ARE THE ATTITUDE NAL ISSUES
THAT ARE GETTING IN THE WAY OF
THIS PERSON GETTING EMPLOYED?
SO THE EMPHASIS WAS ON THESE
SOCIAL BARRIERS THAT WOULD GET
IN THE WAY OF PEOPLE WITH
DISABILITIES PARTICIPATING FULLY
IN SOCIETY.
THIS IS A GRAPHIC REPRESENTATION
OF THE SOCIAL MODEL OF
DISABILITIES.
ON THE LEFT SIDE, THERE IS THE
CLASSIC WHEELCHAIR SYMBOL
REPRESENTING A PERSON WITH AN
IMPAIRMENT OR CONDITION, AND
THEN, ON THE FAR-RIGHT SIDE,
THERE'S A PICTURE THAT
REPRESENTS THE ENVIRONMENT AND
IT HAS SOME BUILDINGS AND ROADS
AND REPRESENTS THE PHYSICAL
SOCIAL AND ECONOMIC AND
POLITICAL ENVIRONMENT.
AND THEN WHAT YOU SEE IN THE
MIDDLE, IS DISABILITY.
THIS INCLUDES EXCLUSION,
OPPRESSION, NEGLECT, AND STEREO
TYPING AND THERE ARE TWO ARROWS
THAT SHOWS HOW DISABILITY IS A
RESULT OF INTERACTION BETWEEN
THE INDIVIDUAL AND THE
ENVIRONMENT.
NOW TAKING THIS A STEP FURTHER,
DISABILITY IS A NATURAL
DIFFERENCE ON SPECTRUM OF
DIVERSITY AND IT'S NOT A
DEIVIENT AND RELATED TO THIS
FROM THE DIVERSITY MODEL WE
RECOGNIZE THAT A DISTINCT
CULTURAL AND SOCIOPOLITICAL
DISABILITY IDENTITY AND THE
DIVERSITY MODEL REJECTS THE IDEA
THAT PEOPLE WITH DISABILITIES
ARE LESSER OR DESK TIVE AND THE
CLEAR PROBLEMS FROM THE
DIVERSITY MODELS, IN THE LIVE
DISABILITY PEOPLE, IS ABLEISM.
PREJUDICIAL BEHAVIOR AND THIS IS
DECADES OF ACTIVISM IN RESPONSE
TO THE HISTORIC ALLO EXPRESSION
AND MARRIAG MARGINALIZATION OF E
ABILITY.
IT RECOGNIZES VALUE IN OUR
EXPERIENCES AND THE WAY IT
ENRICHED HUMANITY.
THIS SLIDE IS A SUMMARY OF FIVE
DIFFERENT MODELS OF DISABILITY
AND IT'S ANOTHER IMPORTANT ONE
AND SO I'M GOING TO KEEP MOVING
ON BECAUSE I DON'T HAVE TIME TO
COVER EVERYTHING.
I WANT TO TALK ABOUT ABLEISM AND
ATTITUDES TOWARDS DISABILITIES.
SO WHAT ARE WE MEANING WHEN WE
SAY ABLEISM.
IT'S PREJUDICE ABILITY ATTITUDES
AND IT'S STIGMA.
DISABILITY STIGMA.
IT'S ABOUT HARMFUL ATTITUDES
TOWARDS PEOPLE WITH DISABILITIES
AND I'M VERY CAREFUL IN SAYING
HARMFUL INSTEAD OF HATEFUL
BECAUSE SOME ABLEISM IS NOT
HATEFUL AND MAY BE WELL INTENDED
AND IT CAN STILL BE HARMFUL.
ABLEISM OPERATES SUDDENLY AND IT
CAN BE UNCONSCIOUS AND IT'S
ANNAL GIST TO RACISM, SEXISM,
OTHERRISMS THAT EFFECT OTHER
DIVERSE AND MARGINALIZED GROUPS.
IN CYTOLOGY WE DIFFERENTIATE
BETWEEN THOSE THAT ARE EXPLICIT
OR CONSCIOUSLY HELD AND
TYPICALLY WE ARE COMFORTABLE
EXPRESSING THOSE OUTWARDLY AND
FIRSTS IMPLICIT ATTITUDES.
WHICH ARE SOMETIMES NOT EVEN
KNOWN TO THE PERSON HOLDING THEM
AND THEY CAN EXIST
SUBCONSCIOUSLY AND AND THEY CAN
BE SUBTLE.
IMPLICIT BIASES CAN BE REDUCED
AND WE CAN ONLY REDUCE THEM IF
WE'RE ABLE TO RECOGNIZE THEM AND
LEARN HOW TO MANAGE THEM AND IN
ORDER TO CONTROL THE LIKELIHOOD
THEY WILL NEGATIVELY EFFECT THE
PEOPLE WHICH WE ARE WORKING FOR
OR SERVING.
AND SO, WHEN WE LOOK ATTITUDES,
WE OFTEN USE A MEASURE CALLED
THE IMPLICIT ASSOCIATION TEST
WHICH YOU MAY HAVE HEARD OF IT'S
AVAILABLE FOR FREE AND ANYBODY
CAN TAKE IT ON-LINE.
THEY HAVE MANY, MANY DIFFERENT
INCLUDING DISABILITIES AND WHEN
WE COMPARE THE RESEARCH ON
DISABILITY, TO THAT OF OTHER
TYPES OF MINORTIZIED GROUPS, WE
SEE THESE STUDENTS ARE ACTUALLY
THEY ARE THE NEGATIVE.
WHEN THEY TAKE THE IET WE SEE
LOWER EXPLICIT AND IMPLICIT
ATTITUDE AND SHOW A MAUD RAL
PREFERENCE FOR NON DISABLED
PEOPLE.
THAT'S INTERNALIZED ABLEISM.
FAMILY MEMBERS OF PEOPLE WITH
DISABILITIES HAVE LOWER EXPLICIT
OR OUTWARD BIAS, BUT THEY HAVE
THE SAME DEGREE OF IMPLICIT BIAS
AND IN GENERAL, WOMEN TEND TO
HAVE LESS BIAS TOWARDS PEOPLE
WITH DISABILITIES THAN MEN AND
HERE IS WHERE IT GETS REALLY
INTERESTING ESPECIALLY FROM A
SCIENTIFIC PERSPECTIVE.
AS OIR EDUCATION LEVEL
INCREASES, OUR EXPLICIT BIAS
DECREASES.
OUR IMPLICIT BIAS STARTS TO
RISE.
AND WHAT THAT TELLS US, THAT
HEALTHCARE PROVIDERS AND
RESEARCHERS, ARE GENERALLY NOT
AWARE OF THEIR OWN BIASES.
SO, WE CLASSIFY THIS GROUP OF
PEOPLE IN THE LITERATURE AS
AVERSIVE ABLEIST OR PEOPLE WITH
LOW EXPLICIT PREJUDICE AND HIGH
LEVELS OF IMPLICIT PREJUDICE.
I WANT TO POINT OUT THERE'S A
LOT OF DIFFERENCES UNDER THE
UMBRELLA TERM OF DISABILITY.
WE ARE EXTREMELY HETERO GENIUS
GROUP.
THERE ARE OBVIOUSLY MANY
DIFFERENT TYPES OF DISABILITIES
AND SO WHAT I HAVE DEVELOPED TO
THINK ABOUT ABLEISM, IS THIS
HIERARCHY OF STIGMA AND
BASICALLY I'VE TAKEN THE
LITERATURE AND HOW WE PRESSURE
ATTITUDES AND CREATE INSIDE
HIERARCHY WHERE YOU SEE ON THE
TOP, THAT PEOPLE WITH
DISABILITIES THAT ARE PHYSICAL,
CHRONIC ILLNESS, SO ON, THOSE
TEND TO BE THE LEAST
STIGMATIZED.
THEY'RE STILL A LOT OF ABLEISM
BUT WHEN YOU COMPARE IT TO
GROUPS LIKE YOU SEE AT BOTTOM OF
THE PYRAMID, PEOPLE WITH
PSYCHIATRIC DISABILITIES AND
INTELLECTUAL DISABILITIES ARE
MUCH, MUCH MORE STIGMATIZED
COMPARED TO THE PEOPLE WHO MIGHT
FALL AT TOP OF THIS PYRAMID.
OF COURSE THERE ARE EXCEPTION TO
THIS.
FOR ONE, THERE'S CERTAIN TYPES
OF DISABILITIES THAT ARE
EXTREMELY STIGMATIZING.
I'LL GIVE YOU AN EXAMPLE OF THE
PHYSICAL DISABILITY OF SOMEONE
WHO HAS A FACIAL ABNORMALITY.
THAT IS EXTREMELY STIGMATIZING.
IT MAY NOT BE VERY IMPAIRING BUT
IT'S VERY STIGMATIZING.
SO THAT FALL LOWER ON THE
PYRAMID.
SAME WITH THE CHRONIC ILLNESS OF
HIV/AIDS.
IT'S VERY, VERY STIGMATIZED.
THERE ARE ALSO DIFFERENCES
WITHIN THESE CATEGORIES SO, WE
HAVE AUTISM AND ADHD BOTH NEURO
DEVELOPMENTAL DISABILITIES AND
AUTISM IS A LOT MORE
STIGMATIZED.
SAME THING IN THE PSYCHIATRIC
CATEGORY AND ANXIETY DISORDERS
AND SCHIZOPHRENIA ARE BOTH
PSYCHIATRIC DISABILITIES AND
ANXIETY IS LESS STIGMATIZING.
THE OTHER THING I LIKE TO LOOK
AT IS HOW RELATIONSHIPS TO
DISABILITY EFFECT ABLEISM.
SO, IN THE MIDDLE CIRCLE HERE, I
HAVE THE RELATIONSHIPS THAT ARE
ESSENTIALLY NEUTRAL.
MEANING THEY'RE REALLY NOT
SIGNIFICANT AND DIFFERENCES AT
THE GROUP LEVEL IN TERMS OF
ATTITUDES.
SO YOU CAN BE A PEER, A
CO-WORKER OF A DISABILITY
PERSON, YOU CAN HAVE HAD MINIMAL
CONTACT WITH A DISABILITY
COMMUNITY, YOU COULD EVEN HAVE A
FAMILY MEMBER WITH A DISABILITY
AND THOSE ROLES ARE NOT
NECESSARILY GOING TO PREDICT
YOUR ATTITUDE TOWARDS
DISABILITY.
IF WE GO OVER TO THE LEFT SIDE
OF THE SLIDE, YOU HAVE
RELATIONSHIPS THAT ARE
ASSOCIATED WITH NEGATIVE
ATTITUDES.
AND THERE'S TWO WAYS THAT WE SEE
THIS IN THE RESEARCH.
ONE IS, PEOPLE WHO REPORT HAVING
HAD NEGATIVE CONTACT WITH THE
DISABILITY COMMUNITY.
IT MAKES SENSE AND NEGATIVE
CONTACT LEADS TO NEGATIVE
IMPRESSION AND STUDENTS.
THE OTHER ONE IS WHEN WE DO
RESEARCH WHERE WE ASK
PARTICIPANTS HOW YOU WOULD FEEL
TO CONSIDER SOMEONE WITH A
DISABILITY, AS A PERSPECTIVE
ROMANTIC PARTNER, ESSENTIAL
PARTNER, SOMEONE WITH WHO YOU
ARE VERY INTIMATE.
THIS I WI WILL IS ITS VERY NEGAE
ATTITUDES.
IF YOU LOOK OVER HERE ON THE
RIGHT SIDE, THESE ARE THE
RELATIONSHIPS ASSOCIATED WITH
POSITIVE ATTITUDES AND OR LESS
NOT BIAS.
AND THERE'S ONE KEY WORD HERE,
THE KEY WORD IS POWER.
IT'S THE PERSON WITH THE
DISABILITY IS YOUR SUPERVISOR,
THEY'RE YOUR BOSS, THEY'RE YOUR
PROFESSOR, THOSE NOT THINGS
ACTUALLY ARE ASSOCIATED WITH
IMPROVEMENTS IN BIAS TOWARDS
DISABILITY.
SO, TO GO BACK TO THE IDEA OF
THIS IDEA OF HIERARCHY WITHIN
DISABILITY, MOST STIGMATIZED
DISABILITIES ARE THOSE THAT ARE
HIGHLY VISIBLE AND THOSE THAT
INVOLVE MENTAL FUNCTIONING AND
THOSE FOR WHICH A PERSON IS SEEN
AS RESPONSIBLE AND THIS IS
IMPORTANT BECAUSE AS HUMAN
BEINGS WE HAVE A TENDENCY TO
BLAME PEOPLE FOR UP FAVORABLE
PERCEIVED UNFAVORABLE OUTCOMES
AND SOCIAL PSYCHOLOGY, WE CALL
THIS THE JUST WORLD FALLACY AND
IT'S THIS HUMAN DESIRE TO
PERCEIVE THE WORLD AS A FAIR AND
JUST PLACE.
AND SO DISABILITIES THAT ARE
PERCEIVED AS HAVING A MENTAL OR
BEHAVIORAL COMPONENT SUCH AS A
SUBSTANCE USE DISORDER ARE MORE
CONTROLLABLE AND THUS THE PERSON
IS SEEN AS MORE RESPONSIBLE AND
BLAMED WHEN COMPARED TO
DISABILITIES THAT ARE PERCEIVED
TO BE LESS CONTROLLABLE SUCH AS
PHYSICAL OR SENSORY
DISABILITIES.
SO I MENTIONED EARLIER THAT
ATTITUDES TOWARDS DISABILITIES
EXIST ON A CONTINUUM.
AND SO I DEVELOPED THIS
SENSATIONALIZED CONTINUUM TO
DESCRIBE WHAT TYPE OF ATTITUDES
WE TEND TO SEE.
ON THE LEFT SIDE, WE HAVE THE
INFERIOR STEREOTYPES.
THAT ARE NEGATIVE.
PEOPLE WITH DISABILITIES ARE PRO
TRADE AS DEPENDENT, VULNERABLE,
INCOMPETENT AND ON THE RIDE
SIDE, WE HAVE THE HERO END OF
THE SPECTRUM THAT'S THE OVERLY
POSITIVE STEREOTYPES WHERE
PEOPLE WITH DISABILITIES ARE
CHARACTERIZED AS INSPIRATIONAL,
COURAGEOUS AND SUPER HUMAN AND
THE PROBLEM HERE IS THAT THESE
EXTREME POSITIVE AND NEGATIVE
CAN BE DEHUMANIZING THUMANIZE TN
BE HARMFUL AND IT'S NOT THE ONLY
MINORTIZIED COMMUNITY THAT DEALS
WITH THE PROBLEM OF
QUOTE-UNQUOTE OVERLY POSITIVE
STEREOTYPES.
NOW, ONE WAY THAT YOU SHE PLAY Y
OUT IS THE CONCEPT THAT THE
DISABILITY COMMUNITY CALLS
INSPIRATION PORN.
IT'S MEANT TO BE A PROVOCATIVE
TERM.
WHAT ARE THESE OFTEN SEEN ON
SOCIAL MEDIA AND IN OTHER
PLACES, THEY'RE IMAGES OF
DISABILITY PEOPLE WITH
MOTIVATIONAL STATEMENTS ATTACHED
THAT IN THE WORDS OF THE LATE
GREAT STELLA YOUNG, HAVE THE
DUEL FUNCTION OF MAKING THE NON
DISABLED FEEL BETTER ABOUT
THEMSELVES WHILE SIMULTANEOUSLY
HOLDING THE AVERAGE DISABLED
PERSON TO AN IMPOSE BLEE HIGH
STANDARD.
I HAVE TWO EXAMPLES OF THIS ON
THE SLIDE.
ON THE TOP-RIGHT, YOU SEE
THERE'S AN AMPUTEE SURFER AND
THIS PICTURE IS ACCOMPANIED BY A
QUOTE FROM SCOTT HAMILTON, THAT
SAYS, THE ONLY DISABILITY IN
LIFE IS A BAD ATTITUDE.
THEN YOU GO DOWN TO THE LOWER
PICTURE, IS A PHOTO OF A CHILD
USING A MANUAL WHEELCHAIR WITH A
BASKETBALL ON THEIR LAP PLAYING
A GAME OF WHEELCHAIR BASKETBALL.
AND THE TEXT THAT ACCOMPANIES
THIS IMAGE SAYS, YOUR EXCUSE IS
INVALID.
AND YOU MAY NOTICE THAT I'VE
COVERED UP THE PEOPLE'S FACES.
THE REASON WHY I DO THAT BECAUSE
WHAT I FOUND, WHAT I'VE LEARNED
OVER TIME DOING THIS WORK, IS
THAT OFTEN THESE PICTURES ARE
TAKEN FROM SITES THAT PEOPLE
THOUGHT WERE PRIVATE, FROM THEIR
PROFILES, AND USED WITHOUT THEIR
CONCEPT, AND OFTEN EVEN WITHOUT
THEIR KNOWLEDGE.
SOME OTHER EXAMPLES OF THIS
INSPIRATION PORN, ARE CALLING
THEM INSPIRATIONAL FOR CARRYING
OUT DAILY TASKS AND PRAISING
THEM FOR QUOTE-UNQUOTE
OVERCOMING THEIR DISABILITIES
AND ANOTHER ONE WE SEE A LOT IS
KEEPING PRAISE ON NON DISABLED
PEOPLE FOR HELPING OR
DO-GOODING.
WITH SOMEONE WITH A DISABILITY.
SO, IN THIS EXAMPLE ON THE
RIGHT-HAND SIDE OF THE SLIDE,
THERE'S A YOUNG COUPLE GOING TO
PROM.
HE ASKED HER TO PROM EVEN IF HER
CONDITION.
LIKE AND HAIR EQUALS RESPECT.
SHE'S IN A POWER WHEELCHAIR AND
HE IS STANDING UP.
SO, I GUESS WE'RE IT TO ASSUME
HE IS NOT DISABLED.
THIS WHOLE IDEA IS LUDICROUS,
RIGHT, THAT WE DON'T KNOW THESE
PEOPLE FOR ALL WE KNOW, YOU
KNOW, SHE'S DOING HIM A FAVOR
TAKING HIM TO THE PROM.
AND ANOTHER AREA WHERE WE SEE
THIS AS NOT DISABLED PEOPLE IS
GOING INTO THE REHAB CLINIC OR
GOING INTO BUY DURABLE MEDICAL
EQUIPMENT.
WE HAVE SPINNATIONAL IMAGES INS.
THERE'S AN EXAMPLE OF A DIS
PERSON IN A WHEELCH WHEEL CLIMBA
MOUNTAIN OR ROCK CLIMBING.
THE AND MESSAGE THIS GIVES OFF
IS THAT DISABILITY IS A NEGATIVE
BARRIER IN LIFE THAT CAN
SUPPOSEDLY BE OVERCOME THROUGH
SPORTS AND A POSITIVE ATTITUDE.
AND, IF THIS DISABLED ATHLETE
CAN ACHIEVE SUCH A FEAT, ANY
DISABLE PERSON CAN.
IT'S THIS "YOU CAN" MIND SET
WHERE ACHIEVEMENT IS DICTATED BY
THE INDIVIDUAL'S LEVEL OF
EFFORT.
AND AGAIN, I WANT TO HIGHLIGHT A
QUOTE FROM STELLA YOUNG BECAUSE
SHE HAS SUCH A WONDERFUL WAY OF
RESPONDING TO THESE TYPES OF
IMAGES AND SHE SAID NO AMOUNT OF
SMILING AT A FLIGHT OF STAIRS
OVER TURNED IT INTO A RAMP.
AND I THINK THAT IS PROFOUND.
YOU CAN BE THE MOST LUCKY
DISABLED PERSON AND YOU ARE
STILL GOING TO BE LIVING IN A
WORLD THAT WAS NOT BUILT FOR
PEOPLE LIKE YOU.
I'M GOING TO MOVE IT A CLIP HERE
BECAUSE I KNOW WE'RE RUNNING OUT
OF TIME.
I WANT TO TALK ABOUT THIS
ICEBERG ANALOGY.
THE IDEA OF AN ICEBERG IS THAT
THEY ARE HUGE AND MOST OF THE
VERY DANGEROUS PARTS ARE UNDER
WATER.
SO, I ADAPTED THIS FROM THE WORK
OF COLLEAGUES WHO USED IT TO
TALK ABOUT RACISM BECAUSE I
THOUGHT IT WAS WONDERFULLY DONE.
THERE'S SOME ABLEISM THAT IS
ABOVE THE SURFACE HERE.
SO THERE'S A PICTURE OF AN
ICEBERG WITH A SMALL PORTION
ABOVE THE SURFACE AND THAT'S THE
INTERPERSONAL ABLEISM THAT
OCCURS BUT UNDER THE SURFACE,
THERE'S INDIVIDUAL AND INTERNAL
ABLEISM, INSTITUTIONAL,
STRUCTURAL AND SYSTEMIC ABLEISM.
SO, THE TOP PART ARE MICRO AND
CAN INCLUDE MICROAGGRESSIONS
WHERE IT'S THE BOTTOM PART ARE
THE MORE DEEPLY INGRAINED MACRO
AGGRESSIONS THAT OCCUR AT THE
SYSTEMIC LEVEL.
HOPEFULLY MANY OF YOU KNOW WHAT
MICROAGGRESSIONS ARE.
IF YOU DON'T, THESE ARE SUBTLE,
INDINDIRECT BEGINS PEOPLE WHO AE
PART OF MARGINALIZED
COMMUNITIES.
IT WAS ORIGINALLY IDENTIFIED TO
OCCUR WITH PEOPLE WHO WERE
MEMBERS OF MINORTIZIED RACIAL
IDENTITIES.
THESE ARE EVERY DAY OF SLIGHTS
AND INSULTS THAT CAN BE
OFFENSIVE AND SOMETIMES PEOPLE
ARE WELL INTENTIONED BUT THEY
DON'T REALIZE THAT WHAT THEY'RE
SAYING IS UPSETTING OR
OFFENSIVE.
WHAT THEY'RE SAYING OR DOING.
AND THESE MICROAGGRESSIONS CAN
REFLECT OUR INTEREST AND BIASES
THAT WE HOLD WHICH I MENTIONED
EARLIER.
SO, I DON'T HAVE A TON OF TIME
TO GO OVER EVERY MICRO
AGGRESSION BUT I WILL HIGHLIGHT
A COUPLE OF THEM.
ONE IS THE DENIAL OF PERSONAL
IDENTITY THAT PEOPLE WITH
DISABILITIES REPORT THAT THEY
GET THIS FEEDBACK, YOU KNOW,
THAT NOTHING MATTERS BUT THEIR
DISABILITY SO WHEN I WAS IN
CLINIC AND I HEARD ANNA TENDING
PHYSICIAN SAID I'M GOING TO SEE
THE F.B.I. IN ROOM 432.
THE F.B.I.
THE PERSON WAS BEING REFERRED TO
AS AN OBJECT RATHER THAN A
PERSON.
PEOPLE DENY THE DISABILITY
EXPERIENCE.
I DON'T THINK OF YOU AS
DISABLED.
MOST PEOPLE THINK THAT'S A
COMPLIMENT.
A LOT OF HELPLESSNESS OR
INFANTILIZATION.
A PROVIDER MOVING A CHAIR
WITHOUT ASKING YOU EVEN THOUGH
YOU PLAN TO TRANSFER.
OR SOMETIMES THERE'S A PROVIDER
WILL EXPECT THAT THE DISABILITY
SOMEHOW INFLUENCED ALL ASPECTS
OF A PERSON.
SO SOMETIMES YOU WILL BE A
PROVIDER SPEAKS VERY LOUDLY TO A
BLIND PATIENT.
THE SECONDARY GAIN BECAUSE
CREDIT GOES TO PEOPLE WHO WORK
IN THE DISABILITY FIELD.
YOU KNOW, THAT YOU ARE AMAZING,
YOU ARE DEDICATING YOUR LIFE TO
HELPING THESE POOR DISABLED
PEOPLE.
ANOTHER IS THE DESEXUALIZATION
THAT OCCURS.
WE OFTEN TIMES NEGLECT TO ASK
ABOUT SEXUAL AND REPRODUCTIVE
HEALTH AND ADDRESS THOSE ISSUES
WITH PEOPLE WITH DISABILITIES.
AND FINALLY THE SECOND CLASS
CITIZEN MICRO AGGRESSION IS WHEN
OUR RIGHT TO EQUALITY ARE
DENIED.
SO A VERY REAL EXAMPLE IS A
PATIENT WITH COVID-19 DENIED
TREATMENT BECAUSE DOCTORS DEEMED
HIS QUALITY OF LIFE WITH A BRAIN
AND SPINAL CORD INJURY AS QUOTE
NONEXISTENT.
SO WE HAVE INTERNALIZED ABLEISM
WHICH INVOLVES DISTANCING
OURSELVES FROM THE DISABILITY
COMMUNITY AND WE ALSO MAY
INTERNALIZE THAT DISABILITY
HIERARCHY SO FOR MYSELF AS
SOMEONE WITH A PHYSICAL
DISABILITY MIGHT SEPARATE MYSELF
WITH PEOPLE WITH DEVELOPMENTAL
DISABILITIES AND THINK I'M NOT
LIKE THAT.
IT CAUSES A LOT OF PROBLEMS.
IT MAKES IT DIFFICULT FOR US TO
FORM A DISABILITY COMMUNITY
CULTURE AND PREVENT THAT FROM
COMING TOGETHER TO ADVOCATE.
THE INTERPERSONAL ABLEISM IS
WHEN WE'RE INTERACTING WITH EACH
OTHER ON A ONE TO ONE BASIS AND
IT OCCURS WITHIN A RELATIONSHIP
SO THOSE MICROAGGRESSIONS HAPPEN
IN DAILY LIFE AND THEY HAPPEN IN
HEALTHCARE SETTINGS.
SOME EXAMPLES IS WE SEE CAN
TREAT PATIENTS DIFFERENTLY
BECAUSE OF THEIR DISABILITIES,
MAYBE THINK THINKING THAT
INCOMPETENT OR UNABLE TO MAKE
THEIR DECISIONS.
WE UNFAIRLY DISCOUNT WHAT PEOPLE
WITH DISABILITIES TELL US
BECAUSE OF OUR ASSUMPTIONS AND
WE GET UNDER CONFIDENT.
WE DON'T QUESTION OUR FIRST
INTUITION OR SEEK OUT SECOND
OPINIONS SO MUCH AND WE DON'T
REFLECT CRITICALLY SOMETIMES
ABOUT THE SOCIAL CONDITIONS AND
THE DETERMINANTS OF HEALTH
FOCUSING INSTEAD JUST ON THE
INDIVIDUAL PERSON WE'RE WORKING
WITH.
OTHER WAYS THIS CAN HAPPEN ARE
OVERLOOKING IMPORTANT SUBJECTS.
I SEE THIS ALL THE TIME WITH SEX
YOUAL TSEXUALITY AND PARENTING.
NO ONE TALKS TO THESE PEOPLE
ABOUT THESE THINGS.
IF YOU WANT TO BE SEXUALLY
ACTIVE OR BECOME A PARENT?
WHAT MIGHT THAT LOOK LOOK FOR
YOU.
SOMETIMES THERE CAN EVEN BE SOME
INTRUSIVE CURIOSITY ON THE PART
OF HEALTHCARE PROVIDERS WHERE
THEY'RE ASKING THINGS THEY MIGHT
LOOK TO KNOW BECAUSE THEY'RE
CURIOUS RATHER THAN THINGS THAT
HE ACTUALLY NEED TO KNOW.
AND INSTITUTIONAL ABLEISM IS
WHERE WE HAVE ABLEISM BAKED INTO
OUR ORGANIZATION POLICIES AND
PRACTICES AND SO WE SAW THIS
EVERYWHERE DURING THE LOCAL
CRISIS CARE POLICIES FROM
MEDICAL RATIONING IN COVID-19.
ORGAN TRANSPLANT CRITERIA IS
LIKE THIS AND THE PROCESS FOR
REQUESTING REASONABLE
ACCOMMODATIONS TYPICALLY
CONVOLUTED AND DIFFICULT.
NOW WE'RE GOING ON TO THE ON IC.
THIS IS ACROSS INSTITUTIONS
BAKED INTO OUR LAWS AND OUR
POLICIES AND THIS CREATES THESE
DISPARITIES AND OUTCOMES THAT WE
SEE ACROSS THE LITERATURE FOR
PEOPLE WITH DISABILITIES AND
THOSE STATE STANDARDS FOR
MEDICAL RATIONING.
AND OVER ALL LACK OF TRAINING
AMONG HEALTHCARE PROVIDERS.
DISCRIMINATORY OF PAY LAWS,
MARRIAGE LAWS, THAT DISCRIMINATE
AGAINST PEOPLE WITH
DISABILITIES.
LACK OF AFFORDABLE AND
ACCESSIBLE HOUSING.
AND FINALLY WE HAVE SYSTEMIC
ABLEISM.
WHICH EMPHASIZES ENTIRE SYSTEMS.
SO POLITICAL, LEGAL,
CRIMINAL-JUSTICE SYSTEM,
INCLUDING THE STRUCTURES THAT
UPHOLD THESE SYSTEMS.
THIS IS SERVICE I H DEEPLY EMBER
LIVES.
IT'S EVERYWHERE.
ESTABLISHED BELIEFS AND STUDENTS
THAT PRODUCE CONDO AND CONDONE D
UNFAIR TREATMENT.
THIS IS ON GOING AND HISTORICAL
INJUSTICES THAT HAVE OCCURRED
OVER TIME DISABLED POVERTY,
MORTALITY RATE AND MEDICAL
SYSTEM THAT ARE INTENDED TO MAKE
PROCESS.
I KNOW I'M AT TIME.
I HAVE A COUPLE OF REFERENCE
SLIDES AND SEE IF WE HAVE ANY
TIME FOR COMMENTS OR QUESTIONS.
>>THANK YOU SO MUCH.
THAT WAS AN AMAZING TALK.
YOU COVERED A LOT OF TERRITORY.
I DO WANT TO LET PEOPLE KNOW
THERE'S BEEN A FEW QUESTIONS
ABOUT THIS.
YES, THESE SLIDES WILL BE MADE
AVAILABLE TO EVERYONE AFTER THE
WORKSHOP.
AND BECAUSE MANY PEOPLE HAVE
BEEN SAYING THAT THEY THINK THIS
WOULD BE A REALLY TERRIFIC
RESOURCE FOR THEM TO USE AND
SOME OF THEIR CLASSES.
AND I'M GOING TO TRY AND BIN UP
A NUMBER OF DIFFERENT QUESTIONS
INTO ONE.
YOU'VE COMPLAINED A COMMUNITY OF
PEOPLE WITH A DIS ABILITY IS SO
VARIED.
AS MANY PEOPLE WITHOUT
DISABILITIES.
AND THAT VERY OFTEN, THERE'S AN
ATTEMPT TO KIND OF FLATTEN THEM
TO SIMPLIFY THEM AND MAKE THEM
ALL ABOUT JUST ONE THING AND SO
I WAS WONDERING IF YOU WOULD
HAVE JUST ANY ONE -- NOW I'M
SAYING JUST ANY ONE -- ANY TAKE
HOME MESSAGE FOR PEOPLE IF
THERE'S ONE THING THAT WE ALL
NEED TO KEEP IN MIND, SO THAT WE
CAN TRY AND AVOID BEING GUILTY
OF THAT FLATTENING, OF A COMPLEX
INDIVIDUAL INTO ONE
CHARACTERISTICS, WHAT WOULD THAT
BE?
THAT'S A GREAT QUESTION.
AND I THINK YOU KNOW, SOMETIMES
WHEN I PRESENT, I TELL PEOPLE
YOU KNOW, IF THERE'S ONE THING
THAT YOU WERE TO TAKEAWAY TODAY,
IS PLEASE RECOGNIZE THE WAYS
THAT ABLEISM IS EMBEDDED ACROSS
THE SYSTEMS AND INSTITUTIONS
BECAUSE WE MAKE THE MISTAKE, I
BELIEVE, WE OVER FOCUS ON THE
INDIVIDUAL PERSON AND
PSYCHOLOGY, I'M A PSYCHOLOGIST
AND THAT'S A BIG FRUSTRATION
THAT I HAVE WITH MY OWN FIELD IS
WE TEND TO FOCUS ON THE
PERSONALITIES AND THEIR COPING
SKILLS AND DIFFERENT THINGS AND
WE DON'T DO AS GOOD A JOB AS
FOCUSES ON WHAT'S THE FAMILY
DYNAMICS AND WHAT'S THE LIVING
SITUATION.
WHETHER OR NOT ARE THE ATTITUDES
AROUND THIS PERSON.
WHAT KIND OF NOT ABLEISM ARE
THEY EXPERIENCING?
SO, THAT'S MY KIND OF UNDERLYING
MESSAGES.
WHEN WE SEE PROBLEMS, DON'T BE
SO QUICK TO ATTRIBUTE IT TO THE
INDIVIDUAL.
LOOK AT THE ENVIRONMENT.
>>THANK YOU.
AND IN THE INTEREST OF TIME, I'M
GOING TO MOVE ON TO OUR NEXT
SPEAKER, BUT REALLY LOOKING
FORWARD TO HEARING YOUR INSIGHTS
OVER THE NEXT COUPLE OF DAYS AS
WELL.
>>THANK YOU.
>>OUR NEXT SPEAKER FOR TODAY IS
Dr. MEGAN MORRIS.
Dr. MORRIS IS AN ASSOCIATE
PROFESSOR IN THE DIVISION OF
GENERAL INTERNAL MEDICINE AT
UNIVERSITY OF COLORADO MEDICAL
CAMPUS.
SHE'S THE FOUNDER AND DIRECTOR
OF THE DISABILITY EQUITY
COLLABORATIVE AND HER RESEARCH
AIMS TO IDENTIFY AS WELL AS
ADDRESS THE MULTI-LEVEL
CONDITIONS THAT CONTRIBUTE TO
THE PROVISION OF EQUITABLE CARE
FOR PEOPLE WITH DISABILITIES.
AND SO THE TITLE OF HER TALK IS
"NAMING ABLEISM IN HEALTHCARE."
Dr. MORRIS --
>>
>>GOOD MORNING.
THANK YOU FOR HAVING ME.
SO, THIS MORNING OR AFTERNOON,
WHERE EVER YOU ARE, I WOULD LIKE
TO START WITH A STORY.
WITH A CASE.
AND THIS IS MY FAMILY'S STORY.
THIS IS A PICTURE OF MY UNCLE
DAVID, WITH HIS PARENTS, MY
GRANDPARENTS AT DAVID'S
GRADUATION, HIGH SCHOOL
GRADUATION.
DAVID WOW BORN WITH A
DEVELOPMENTAL DISABILITY
INCLUDING INTRACTABLE SEIZURES.
DAVID WAS AN INCREDIBLY SOCIAL
GUY.
HE LOVED WALKING THE
NEIGHBORHOOD, CATCHING UP ON ALL
THE GOSSIP.
HE ENJOYED PLAYING GUARD GAMES
AND WATCHING RERUNS OF 1960s
SITCOMS.
AS DAVID GOT OLDER, HIS SEES
YOU'RSEIZURES INCREASED AND AS L
AS ILLNESSES.
ON DECEMBER 23rd OF 2016 HE
WAS ADMITTED TO THE LOCAL
HOSPITAL WITH ASPIRATION
PNEUMONIA WHICH LIKELY WAS A
RESULT OF A RECENT ASPIRATION
DURING A SEIZURE.
SO IN ADDITION TO HIS PNEUMONIA
EFFECT WEAK AND HAD SIGNIFICANT
DIFFICULTIES SWALLOWING.
THE MEDICAL TEAM TREATED DAVID'S
PNEUMONIA AND AFTER FOUR DAYS,
HE NO LONGER REQUIRED TREATMENT
FOR HIS PNEUMONIA.
AND WHILE HIS SWALLOWING
ABILITIES FIRE DEPARTMENT TO TOD
DIFFICULT SWALLOWING AND WAS
UNABLE TO SAFELY EAT OR DRINK BY
MOUTH.
THE TEAM WANTED TO DISCHARGE HIM
BACK TO WHERE HE WAS LIVING,
WHICH WAS A NURSING HOME, BUT
WASN'T SURE WHAT TO DO ABOUT
EATING AND DRINKING.
SO THEY TURNED TO US, HIS
FAMILY, PRIMARILY MY DAD AND I,
AND ASKED HOW WE WOULD LIKE TO
PROCEED.
AND MY DAD AND I DISCUSSED IT
AND WE THOUGHT A TUBE TO HIS
STOMACH WOULD BE TOO INVASIVE
AND NOT THE RIGHT DECISION FOR
DAVID.
DAVID HAD HAD PREVIOUSLY HAD AN
NG TUBE SO A FEEDING TUBE THAT
WENT FROM HIS NOSE AND STOMACH
AND HE TOLERATE THIS REALLY
WELL.
WE APPROACHED THE MEDICAL TEAM
AND SAID, WELL CAN WE DO A TRIAL
OF AN NG TUBE BECAUSE WE HOPED
THAT PERHAPS WITH A FEW MORE
DAYS THAT DAVID WOULD CONTINUE
TO IMPROVE WITH HIS STRENGTH AND
HIS SWALLOWING ABILITIES AND
TRANSITION INTO EATING AND
DRINKING INDEPENDENTLY.
AND THE TEAM PUSHED BACK ON US
AND THEY SAID, AN NG TUBE IS
REALLY UNCOMFORTABLE AND WE JUST
WON WANT TO PUT DAVID IN ANYMORE
DISCOMFORT.
AND WE PUSHED BACK AT THEM AND
SAID, WELL, DAVID HISTORICALLY
HAS HAD A REALLY HIGH PAIN
TOLERANCE.
AGAIN, HE HAS TOLERATE AN NG
TUBE BEFORE, REALLY WELL, AND
AGAIN, RECOVERED AFTER AN
ILLNESS WHERE HE REQUIRED THE NG
TUBE.
AND SO WE WEPT BACK AND FOURTH
AND WE THOUGHT WE REACHED A
CONCLUSION AND WE WENT HOME FOR
THE EVENING.
THE NEXT MORNING, AS WE WERE
PREPARING TO GO INTO SEE DAVID,
AT THE HOSPITAL, WE RECEIVED A
CALL THAT DAVID WAS DISCHARGED
HOME TO THE NURSING HOME.
WHICH THE NURSING HOME BY THE
WAY, SAID THEY WERE PERFECTLY
FINE WITH TAKING HIM WITH AN NG
TUBE AND MANAGING HIS NG TUBE
BUT HE WAS DISCHARGED WITHOUT AN
NG TUBE AND PUT ON A FULL DIET
WHICH MEANT THAT THEY WERE
FEEDING HIM AND GIVING HIM
LIQUID TO DRINK.
AS EXPECTED, WITHIN 24 HOURS,
DAVID HAD PNEUMONIA AGAIN.
AND THIS TIME, THE TEAM PRESSED
US FOR HOSPICE.
AND AFTER SOME DISCUSSION WE
DECIDED TO PROCEED WITH HOSPICE.
AFTER A FEW DAYS, I SAT WITH
DAVID FOR THE VERY LAST TIME
PROVIDE ORAL CARE AND SAYING
GOOD-BYE AND HE PASSED AWAY.
MY FAMILY AND I REALLY STRUGGLED
WITH WHAT HAD HAPPENED WITH
DAVID.
WE WERE HISS ADVOCATES AND WE
FELT LIKE PERHAPS WE HAD FAILED
HIM, BUT ALSO WE FELT LIKE THE
MEDICAL TEAM AND THE MEDICAL
SYSTEM HAD FAILED HIM.
AND THIS WAS NOT THE FIRST TIME.
THROUGHOUT DAVID'S ENTIRE LIFE,
HE HAD BEEN UNDER ESTIMATED,
AGAIN, IN SOCIETY, BUT ALSO
WITHIN THE MEDICAL FIELD.
HE WAS ALWAYS UNDERESTIMATED AND
ASSUMED HE WASN'T ABLE TO DO
THINGS AND THERE WAS ALWAYS
COMMENTS OF HOW WE SHOULD
PERHAPS DISCONTINUE CARE.
THIS WAS NOT THE FIRST TIME HE
HAD BEEN ON HOSPICE.
WHERE DID THESE ASSUMPTIONS AND
ATTITUDES COME FROM?
WHY DID DAVID EXPERIENCE THIS?
AND I BELIEVE THAT IT'S DUE TO
ABLEISM WHICH IS WHY WE'RE ALL
HERE TODAY.
AND I ALSO SHARE MY STORY WITH
YOU TODAY TO HIGHLIGHT THAT THIS
IS NOT A UNIQUE SITUATION.
I HAVE THE PRIVILEGE OF WRITING
DAVID'S STORY UP AND HAVING IT
PUBLISHED IN THE NEW ENGLAND
JOURNAL OF MEDICINE AND WITHIN
WEEKS AND MONTHS OF PUBLISHING
THIS PAPER, I RECEIVED HUNDREDS
OF E-MAILS FROM PEOPLE STATING
SIMILAR EXPERIENCES AS MY FAMILY
AND AS DAVID'S SO AGAIN, THIS IS
NOT A UNIQUE.
WE HAVE A WIDE BODY OF
LITERATURE DEMONSTRATING THE
DISPARITIES AND HEALTHCARE
OUTCOMES, EXPERIENCED BY PEOPLE
WITH DISABILITIES.
SO, AGAIN, IT'S BEEN NAMED AND
DESCRIBED HERE BUT AGAIN, JUST
WANT TO HIGHLIGHT ABLEISM, A
COMPLEX SYSTEM OF BELIEFS,
ATTITUDES, BEHAVIORS AND
POLICIES THAT EXCLUDE, DEN GREAT
AND HARM PEOPLE WITH
DISABILITIES.
AS Dr. ANDREWS MENTIONED, I
ALSO WANT TO HIGHLIGHT
INTERPERSONAL ABLEISM.
ARE INDIVIDUAL LEVEL ATTITUDES
AND BEHAVIOR THAT CREATE AND
PERPETUATE ABLEISM AND SECONDLY,
STRUCTURAL ABLEISM.
FOR THE LOSS POLICIES
INSTITUTIONAL PRACTICE AND
ENTRENCHED FORMS THAT CREATE AND
PERPETUATE ABLEISM AND I WOULD
LIKE TO PROPOSE THAT BOTH
INTERPERSONAL AND STRUCTURAL
ABLEISM IS RAMPANT AND HEALTH
YEAR AND CAN HAVE DEVASTATING
EFFECTS ON THE LIVES OF
INDIVIDUALS WITH DISABILITIES.
SO, INTERPERSONAL ABLEISM.
THERE'S A WIDE BODY OF
LITERATURE MAINLY QUALITATIVE
ACTIVITIES WITH PEOPLE WITH ALL
TYPES OF DISABILITIES THAT
DESCRIBES PEOPLE WITH
DISABILITIES REPORTING
EXPERIENCES WITH A WIDE RANGE OF
ABLEIST ATTITUDES AND BEHAVIORS
DURING THEIR INTERACTIONS WITH
THE HEALTHCARE TEAM.
THIS INCLUDES NEGATIVE AND
INAPPROPRIATE ASSUMPTIONS
ACCUSING BABY TALK WITH
DISABILITIESDISABILITY ADULTS WH
DISABILITIES AND HOW TO INTERACT
WITH PATIENTS WITH DISABILITIES.
ALSO TEAM MEMBERS ACTING FEARFUL
OR CONFUSED.
PATIENTS REPORT FEELING
DISREGARDED AND EXCLUDED FROM
CONVERSATIONS AND DECISION S
WITH THEIR CARE.
>>MEGAN, ARE YOU ADVANCING THE
SLIDES OR ARE WE?
WE ARE A COUPLE SLIDES BEHIND
YOU.
I AM ADVANCING THE SLIDES, I'M
SORRY.
YOU WANT TO BE ON SLIDE FIVE,
RIGHT?
I'M NOT SEEING THAT.
>>ALL RIGHT.
>>MEGAN, WE ARE ADVANCING YOUR
SLIDES FOR YOU SO JUST TELL US
NEXT SLIDE WHEN YOU ARE READY.
>>NEXT SLIDE.
THIS LITERATURE HAS BEEN
DISCUSSED PREVIOUSLY BUT I WANT
TO HIGHLIGHT IT AGAIN.
SO THE EXPERIENCES THAT AGAIN
ARE REPORTED IN THE QUALITATIVE
INTERVIEWS ARE NOT SURPRISING
GIVEN THE SURVEY SURPRISES WE
SEE OF HEALTHCARE PROFESSIONALS.
A STUDY THAT ANALYZED THE
RESULTS OF OVER 25,000
HEALTHCARE PROFESSIONALS LOOKING
AT THEIR DISABILITY IMPLICIT
ASSOCIATION TEST FOUND THAT 82%
HAD A PREFFENS FOR ABLE BODIED
INDIVIDUALS OVER INDIVIDUALS
WITH DISABILITIES.
ALSO, THE WORK OF Dr. IEZONNI
AND COLLEAGUES, THERE WAS A
STUDY AND ONLY 57% REPORTED
STRONGLY WELCOMING PEOPLE WITH
DISABILITIES INTO THEIR
PRACTICE.
ONLY 41% SUPPORTED FEELING VERY
CONFIDENT ABOUT PROVIDING THE
SAME QUALITY OF CARE AND THEN
FINALLY, 82% RATED THE QUALITY
OF LIFE WORSE FOR PEOPLE WITH
SIGNIFICANT DISABILITIES AS
COMPARED TO THOSE WITHOUT
DISABILITIES AND AGAIN, AS Dr.
SWENOR MENTIONED IN HER KEYNOTE,
THIS IS REALLY IMPORTANT BECAUSE
MANY STUDIES HAVE FOUND THAT
INDIVIDUALS WITH DISABILITIES
ACTUALLY REPORT SIMILAR LEVELS
OF QUALITY OF LIFE AS PEOPLE
WITHOUT DISABILITIES.
WE CONDUCTED A STUDY HERE AT THE
UNIVERSITY OF COLORADO WITH
MEDICAL STUDENTS.
WE GAVE THEM A DISABILITY
IMPLICIT ASSOCIATION TEST AND
FOUND THAT 85% REPORTED A
PREFERENCE FOR ABLE BODY
INDIVIDUALS.
SO AGAIN, VERY SIMILAR TO OUR
PRACTICING HEALTHCARE
PROFESSIONALS.
ONLY FIVE PERCENT REPORTED
FEELING VERY COMPETENT ABOUT
PROVIDING THE SAME QUALITY OF
CARE TO PATIENTS WITH
DISABILITIES AS THOSE WITHOUT
DISABILITIES.
AND THEN FINALLY, 71%, A LITTLE
BIT BETTER THAN OUR PRACTICING
CLINICIANS BUT 71% STILL A HIGH
RATE RATED THE QUALITY OF LIFE
WORSE AS INDIVIDUALS WITH
DISABILITIES AS COMPARED IT TO
THOSE WITHOUT DIS ABILITIES.
AND I WANT TO HIGHLIGHT WHAT
THESE ASSUMPTIONS ABOUT THE
QUALITY OF LIFE CAN MEAN AT APP
INDIVIDUAL LEVEL.
I WANT TO TELL THE STORY OF
Mr. MICHAEL HICKSON.
HE WAS A MAN WHO HAD A MASSIVE
BRAIN INJURY AS A RESULT OF A
CARDIAC ARREST.
HE WAS LIVING IN A NURSING HOME
AT THE START OF THE COVID-19
PANDEMIC AND LIKE MANY PEOPLE
LIVING IN NURSING HOMES, AT THE
START OF THE PANDEMIC, HE COP
TRACTED COVID-19.
HE WAS ADMITTED TO THE HOSPITAL
IN JUNE OF 2020, DUE TO
COMPLICATIONS RELATED TO HIS
COVID-19.
THE MEDICAL TEAM MADE THE
DECISION TO NOT TREAT MICHAEL
HICKSON FOR HIS COVID-19
SYMPTOMS AS WELL AS THEY MADE
THE DECISION TO WITHDRAW
NUTRITIONAL SUPPORT WHICH HE HAD
PRIOR TO COMING INTO THE
HOSPITAL.
Mr. HICKSON'S WIFE PUSHED BACK
ON THIS AND QUESTIONED THIS
DECISION.
WHAT SHE DID WAS AUDIO RECORDED
HER CONVERSATION WITH THE DOCTOR
ABOUT WHY THEY MADE THIS
DECISION.
IN THE RECORDING, THE PHYSICIAN
SAYS, CAUSE OF RIGHT NOW HIS
QUALITY OF LIFE, HE DOESN'T HAVE
MUCH OF ONE.
AND HIS WIFE RESPONDED, WHAT DO
YOU MEAN?
BECAUSE HE IS PARALYZED WITH A
BRAIN INJURY HE DOESN'T HAVE A
QUALITY OF LIFE?
AND THE PHYSICIAN SAYS, CORRECT.
Mr. HICKSON DIED SEVERAL DAYS
AFTER THIS RECORDING, THAT WAS
DONE AND AGAIN AND I BELIEVE
THAT THIS RECORDING DEMONSTRATES
THE AND THE FACT IS ON THE
MEDICAL DECISIONS THAT
HEALTHCARE TEAMS ARE MAKING FOR
PEOPLE WITH DISABILITIES.
AND I ALSO DON'T THINK THIS IS A
UNIQUE STORY.
BUT INTERPERSONAL ABLEISM DOES
NOT TELL THE FULL STORY.
I THINK IF WE WORK ON QUOTE
FIXING THE ATTITUDES OF OUR
HEALTHCARE TEAMS THIS WOULD NOT
ERADICATE ABLEISM.
WE NEED TO ADDRESS THE
STRUCTURAL ABLEISM.
THAT YOU ARE LAWS, POLICIES,
INSTITUTIONAL PRACTICES AND
NORMS THAT CREATE AND PERPETUATE
ABLEISM AND WHEN WE THINK ABOUT
ABLEISM, WE NEED TO GO BACK
THROUGH HISTORY AND A FIE THE
POTENTIAL HISTORICAL CONTEXT
THAT HAS LED TO OUR CURRENT
POLICY LAWS AND NORMS.
TODAY I'LL GIVE TWO EXAMPLES.
WHERE I SEE STRUCTURAL ABLEISM
THAT IS EMBEDDED IN OUR POLICY
SYSTEMS AND NORMS, WITHIN
HEALTHCARE.
PROBABLY THE MOST STRAIGHT
FORWARD EXAMPLE THAT WE CAN ALL
THINK ABOUT IS THE EUGENICS
MOVEMENT AND THE EARLY 20s
CENTURY.
SO THE EUGENICS WAS LED BY THE
FIELD OF MEDICINE AND A
DEMONSTRATION OF DEVALUING OF
PEOPLE WITH DISABILITY THIS IS
SOCIETY.
IT POSTULATED THERE WERE GOOD
GENES AND THESE GOOD GENES
SHOULD BE FOSTERED AND THAT BAD
GENES SHOULD BE ELIMINATED FROM
SOCIETY.
SO SOME OF THE MOST PROMINENT
MINDS IN HEALTHCARE AT THE TIME
SUCH AS THE MAYO BROTHERS WHO
STARTED THE MAYO CLINIC WERE
STRONG PROPONENTS OF EUGENICS
MOVEMENT.
ONE OF THE MOST INSIDIOUS TOOLS
USED BY THE EUGENICS MOVEMENT
WAS FORCED STERILIZATION OF
PEOPLE WITH DISABILITIES.
AND OTHERS THAT SOCIETY HAD
DEEMED CLINICAL UNDESIRABLE.
CARRIE BUCK WAS FORCIBLY
STERILIZED.
Ms. BUCK WAS A YOUNG WOMAN WHO
HAD GIVEN BIRTH FOLLOWING BEING
RAPED AND SHE WAS PLACED IN THE
INSTITUTION BY HER FOSTER
FAMILY.
THE STATE OF VIRGINIA WANTED TO
FORCIBLY STERILIZE CARRIE AND
CARRIE DID NOT WANT TO BE
STERILIZED.
HER CASE WENT TO THE SUPREME
COURT WHO RULED THE STATE COULD
PURSUE WITH STERILIZATION.
THE MOST FAMOUS QUOTE FROM THE
CASE WAS FROM JUSTICE OLIVER
WENDELL HOLMES WHO SAID THREE
GENERATION OGENERATIONS OF I IME
ENOUGH.
THERE WERE 60,000 MEN AND WOMEN
IN THE UNITED STATES WHO WERE
FORCIBLY STERILIZED.
AND WHILE STATE LEVEL
STERILIZATION LAWS WERE
PROGRESSIVELY OVER TURNED
THROUGHOUT 1970s, I BELIEVE
THE LEGACY OF DEVALUING THE
LIVES OF PERSONS WITH DISABILITY
AND BEING A PART OF OUR
INSTITUTIONAL AND GOVERNMENT AND
POLICY CONTINUOUS TO THAT.
SO, AS AN EXAMPLE, NEXT SLIDE,
WE HAVE OUR CRISIS STANDARDS OF
CARE.
AGAIN, DURING THE START OF THE
PANDEMIC, THE COVID-19 PANDEMIC,
STATES WERE REVIEWING THEIR
CRISIS STANDARDS OF CARE AND
EIGHT STATES WERE FOUND TO HAVE
PLANS THAT DEPRIORITIZE PEOPLE
WITH DISABILITIES.
THESE PLANS, FOR EXAMPLE,
INFRASTRUCTURED HOSPITALS TO
CONSIDER BASELINE FUNCTIONING
STATUS IN CRISIS STANDARDS OF
CARE DECISIONS AS WELL AS NOT
OFFERING VENTILATION SUPPORT AND
DEMENTIA OR DRAMATIC BRAIN
INJURIES AND THESE PLANS WERE
DETERMINED BY THE DEPARTMENT OF
HUMAN SERVICES TO BE IN
VIOLATION OF AMERICANS WITH
DISABILITIES ACT.
BECAUSE THEY DISCRIMINATED
AGAINST PEOPLE WITH DISABILITY.
AND WHILE THESE PLANS WERE
ADAPTED, VERY LIKELY THEY
EMBEDDED NORMS IN HEALTHCARE
INFLUENCE INDIVIDUAL LEVEL
DECISIONS IN CARE FOR PEOPLE
WITH DISABILITIES SUCH AS
DECISIONS LIKE THE TEAM MADE IN
MICHAEL HICKSON'S CASE.
I'M GIVING MY SECOND EXAMPLE
WHICH ARE DISABILITY BENEFITS.
FEDERAL DISABILITY BENEFITS.
WHICH THEY ARE VERY CRITICAL AND
IMPORTANT FOR MANY PEOPLE WITH
DISABILITIES.
I WOULD LIKE TO REFER YOUR
ATTENTION TO HERE I HAVE A
CHECKLIST FROM THE WEBSITE ON
HOW TO APPLY FOR DISABILITY
BENEFITS.
AND THE NUMBER ONE ITEM IN THAT
CHECKLIST IS TO PROVIDE YOUR
MEDICAL RECORDS STATING AND
VERIFYING THAT YOU HAVE A
DISABILITY.
SO HOW MIGHT THESE APPLYING FOR
THESE BENEFITS REINFORCE ABLEIST
ATTITUDES AND PRACTICES AND
HEALTHCARE?
FIRST, I BELIEVE IT REINFORCES
THE MEDICAL MODEL.
AS Dr. ANDREWS MENTIONED THE
MEDICAL MODEL POSTULATE THAT
DISABILITY IS A RESULT OF AN
IMPAIRMENT THAT OCCURS AT A
INDIVIDUAL LEVEL AND TO
QUOTE-UNQUOTE ADDRESS DISABILITY
YOU NEED TO HAVE A CURE OF THE
INDIVIDUAL.
SECOND, I BELIEVE IT PUTS
MEDICAL PROVIDERS IN THE
POSITION OF HELPING TO DETERMINE
WHO QUALIFIES OR WHO IS
QUOTE-UNQUOTE WORTHY OF
DISABILITY BENEFITS.
I HAVE THIS PLAY OUT IN EVERY
DAY.
AS A DISABILITY RESEARCHER WHO
STUDIED HEALTHCARE DISPARITIES
FOR THE PAST DECADE, ONE OF THE
MOST COMMON RESPONSES I DID WHEN
I TALKED WITH SOMEONE IN
MEDICINE ABOUT THE RESEARCH I DO
IS THEY WILL REPLY, NEXT SLIDE,
AS REALLY GREAT WORK AND EXCEPT
FOR ALL OF THOSE RESPONDING TO
THE BELIE BELIEF THAT MANY WITHA
LOTS ARE FAKING THEIR
DISABILITIES TO RECEIVE
BENEFITS.
AND SO HOW DOES THIS, AGAIN,
PLAY OUT IN EVERYDAY HEALTHCARE?
I BELIEVE THAT WHEN
ORGANIZATIONS ARE RELUCTANT OR
CONSIDERED THAT PEOPLE WITH
DISABILITIES MIGHT BE TRYING TO
QUOTE SCAM THE SYSTEM FOR
BENEFITS, HEALTH SYSTEMS WILL BE
RELUCTANT TO AND LESS INCLINED
TO INVEST IN ENSURE THEIR
HEALTHCARE ORGANIZATIONS ARE
ACCESSIBLE.
FOR EXAMPLE, SEVERAL MONTHS AGO
I TALKED WITH THE DIRECTOR OF A
PRIMARY CARE CLINIC ABOUT THE
NEED FOR DOCUMENTING
DISABILITIES STATUS AND SHE
SAID, AND PROVIDING
ACCOMMODATIONS AND SHE SAID, WE
CAN'T DO THAT BECAUSE EVERYONE
IN THEIR MOTHER WITH LOW BACK
PAIN WOULD REPORT A DISABILITY.
WE CAN'T PROVIDE ACCOMMODATIONS
NOT KNOWING THAT IT'S ACTUALLY
LEGALLY REQUIRED TO PROVIDE
ACCOMMODATIONS.
HEALTH AIR IS INACCESSIBLE FOR
PEOPLE WITH DISABILITY AND
RESEARCH HAS DEMONSTRATED OVER
AND OVER THERE'S A LACK OF
REASONABLE MODIFICATIONS AND
POLICIES AND PROCEDURES AND
ACCESSIBILITY FACILITIES AND
EQUIPMENT SUCH AS WHEELCHAIR
ACCESSIBLE SCALES AND THERE'S A
LACK OF EFFECTIVE COMMUNICATION.
IN HEALTHCARE EXPERIENCE WITH
PEOPLE BY DISABILITIES.
SO I WANT TO LEAVE US ON A MORE
POSITIVE NOTE.
HOW DO WE MOVE FORWARD?
SO, BEFORE I GET TO A FEW FIRST
STEPS, I BELIEVE, THAT WE CAN
MOVE FORWARD IN ADDRESSING AND
DISMANTLING ABLEISM AND
HEALTHCARE, I WANT TO CALL OUT
OF FIELD OF MEDICINE TODAY DUE
TO THE PROMINENCE OF MEDICAL
MODEL OF DISABILITY IN OUR
SOCIETY, I BELIEVE THAT MEDICINE
HAS THE POWER AND THE
RESPONSIBILITY TO BEGIN THE
PROCESS OF DISRUPTING AND
DISMANTLING ABLEISM IN SOCIETY.
SO WHAT ARE THREE THINGS
HEALTH-CARE SYSTEM CAN DO TODAY?
ONE, IT'S ALREADY BEEN MENTIONED
TODAY AND RECOGNIZE THAT PEOPLE
WITH DIS A LOTS ARE A POPULATION
WHO EXPERIENCE STIGMA,
MARGINALIZATION AND DISPARITIES.
TWO, INCLUDE PEOPLE WITH
DISABILITIES AND DIVERSITY
EQUITY AND INCLUSION EFFORTS AND
THREE, IMPROVE THE DATA ON
PERSONS WITH DISABILITIES.
AND I SPENT A LITTLE BIT OF TIME
ON THIS LAST POINT.
WE CAN'T IMPROVE WHAT WE CAN'T
MEASURE.
WE NEED IMPROVED DATA AT THE
PUBLIC-HEALTH LEVEL SO WE CAN
TRACK QUALITY OF HEALTH AND
HEALTHCARE, MONITOR TRENDS AT A
POPULATION LEVEL AND MAKE
INFORMED POLICY CHANGES.
AND AT A HEALTH-CARE SYSTEM
LEVEL, WE NEED TO BE DOCUMENTING
DISABILITIES STATUS IN THE
ELECTRONIC HEALTH RECORDS SO
THAT WE CAN AGAIN, TRACK THE
QUALITY OF HEALTH AND HEALTHCARE
OUTCOMES AND ORGANIZATION LEVEL
AND EYE FIVE WHERE THESE
DISPARITIES EXIST, DEVELOP AND
IMPLEMENT INTERVENTIONS AND
MEASURE THE EFFECTS OF THOSE
INTERVENTIONS AND IMPROVING
ACCESS TO QUALITY CARE FOR
PEOPLE WITH DISABILITIES AND
FINALLY, WE NEED IMPROVED
COLLECTION OF DISABILITY STATUS
SO WE CAN IDENTIFY WHICH
PATIENTS HAVE DISABILITIES SO WE
CAN PROVIDE THEM ACCOMMODATIONS
THAT HEALTH SYSTEMS ARE ALREADY
FEDERALLY REQUIRED TO PROVIDE.
SO WE'VE DONE A SERIES OF
STUDIES IN THIS TOPIC AND I
WOULD LIKE TO SHARE A LITTLE BIT
OF THAT LITERATURE.
FIRST OFF, WE HAVE DONE MULTIPLE
STUDIES AND FOUND THAT PATIENTS
ARE REALLY GENERALLY SUPPORTIVE
OF BEING ASKED ABOUT THEIR
DISABILITY STATUS AND HAVING IT
RECORDED IN THEIR ELECTRONIC
HEALTH RECORDS.
WHEN WE TALK TO HEALTHCARE
SYSTEMS, THEY OFTEN QUESTION
ABOUT WHETHER IT'S LEGAL TO ASK
PATIENTS ABOUT THEIR
ACCOMMODATION NEEDS AND I CAN
ASSURE YOU IT'S LEGAL AND NOT
ONLY IS IT LEGAL, IT'S THAT
THERE ARE SOME FEDERAL POLICIES
AND LAWS DEPENDING ON HOW YOU
INTERPRET, SOME OF THE SECTION
1357 AND 4302 OF THE AFFORDABLE
CARE ACT STATING HEALTHCARE
ORGANIZATIONS NEED TO DOCUMENT
PATIENTS DISABILITY STATUS.
WE'VE CONDUCTED RESEARCH WITH A
WIDE RANGE OF STAKEHOLDERS AND
FOUND THAT DOCUMENTING
DISABILITIES STATUS HAS BEEN
IDENTIFIED AS A TOP RESEARCH AND
POLICY PRIORITY.
DESPITE ALL OF THIS EVIDENCE,
HEALTH SYSTEMS TODAY ARE
STRUGGLING HOW TO IMPLEMENT
INFLECTION OF DISABILITY STATUS.
WE CONDUCTED INTERVIEWS WITH
SYSTEMS TO UNDERSTAND WHAT ARE
THE BARRIERS TO IMPLEMENTING
SYSTEMATIC COLLECTION OF PATIENT
DISABILITY STATUS.
ONE OF THOSE BARRIERS IS THE
LACK OF FEDERAL POLICY AND
DIRECTION ON HOW BEST TO DO
THIS.
THANKFULLY, WE HAVE SOME RECENT
POLICY CHANGES.
THE OFFICE FOR THE NATIONAL
COORDINATOR FOR HEALTH
INFORMATION TECHNOLOGY, THE
FEDERAL BODY THAT OVERSEES
ELECTRONIC HEALTH RECORDS IN OUR
COUNTRY, LAST SUMMER, JULY OF
2022, RELEASED THEIR KNEW
STANDARDS FOR INTEROPERABILITY
AND IN THIS, THEY REPORTED AND
INCLUDED YOU CAN SEE IT DOWN AT
BOTTOM OF THE SLIDES, CIRCLED IN
RED, A STANDARDIZED DISABILITY
STATUS DATA ELEMENT AND AGAIN
THIS IS REALLY IMPORTANT BECAUSE
WE HAVE SEEN THAT ELECTRONIC
HEALTH RECORD VENDERS ARE
PUTTING INTO THE BASE MODEL OF
ALL OF THEIR EHRS AND ALL OF
THEIR CUSTOMERS THE DISABILITY
DATA ELEMENT.
THIS IS IMPORTANT FIRST STEP.
IT'S STILL ON HEALTHCARE
ORGANIZATIONS TO UTILIZE THAT
FIELD AND COLLECT PATIENTS'
DISABILITY STATUS AND USE THAT
INFORMATION MEANINGFULLY.
TO ADDRESS THIS CONCERN AND NEXT
STEP IS THE ABILITY
COLLABORATIVE AND HAD A GROUP
TOGETHER WE HAVE A WORKING GROUP
WITH NATIONAL STAKEHOLDERS FROM
POLICYMAKERS, PATIENTS, PAYERS,
RESEARCHERS I COULD GO ON AND ON
AND EHR COLLECTORS WHO WORK
TOGETHER TO REVIEW THE EVIDENCE
AND REVIEW WHAT IS CURRENTLY
HAPPENING IN PRACTICE AND
PUTTING TOGETHER AN
IMPLEMENTATION GUIDE FOR
HOSPITALS AND HEALTH SYSTEMS TO
START TODAY TO DOCUMENT
DISABILITY STATUS IN THE
ELECTRONIC HEALTH RECORD.
AND I WANT TO HIGHLIGHT THIS
IMPLEMENTATION GUIDE BECAUSE I
BELIEVE IT'S AN IMPORTANT FIRST
STEP IN AN IMPORTANT STEP IN
EXAMPLES OF HOW STAKEHOLDERS CAN
COME TOGETHER AND MANY WORK TO
DEVELOP SOLUTIONS TO CHANGE
HEALTHCARE TODAY, TO BEGIN TO
ADDRESS ABLEISM AND DISPARITIES
IN CARE TODAY FOR INDIVIDUALS
WITH DISABILITIES.
AND BY ALL OF US, I BELIEVE
COLLECTIVELY NAMING ABLEISM AND
CALLING OUT THE FIELD OF
MEDICINE AND ITS ROLE IN
INTERPERSONAL AND STRUCTURAL
ABLEISM, WE CAN SEE CONCRETE
CHANGES TOWARDS ENSURING A MORE
EQUITABLE HEALTHCARE SYSTEMS AND
ULTIMATELY SOCIETY FOR PEOPLE
LIVING WITH DISABILITIES.
THANK YOU.
>>AT THIS Dr. MORRIS.
THAT WAS A TERRIFIC TALK AND
ESPECIALLY THE WAY THAT YOU
UNPACKED A LOT OF THE ELEMENTS
THAT PLAY INTO YOUR TRACKING
DISABILITY, BECAUSE THAT -- I
THINK YOU MADE A GOOD CASE HOW
THIS IS CRITICAL INFORMATION.
I DO WANT TO REMIND PEOPLE THAT
YES, YOU WILL BE GETTING THE
SLIDES AND THAT WILL INCLUDES A
LINK TO THE IMPLEMENTATION
GUIDE.
WE HAVE QUESTIONS ABOUT THAT.
THERE WERE A LOT OF NOT
QUESTIONS SO MUCH BUT COMMENTS
IN THE QUESTION AND ANSWER
EARLIER IN YOUR TALK, PEOPLE
WERE COMING IN WITH ADDITIONAL
EXAMPLES FROM THEIR EXPERIENCE
ON THE HUGE IMPACT THAT
ASSUMPTIONS, MEDICAL PERSONNEL
HAVE MADE ABOUT QUALITY OF
LIFEEL, THE IMPACT OF THOSE
ASSUMPTIONS HAVE MADE ON
PEOPLE'S MEDICAL CARE SO IT
REALLY IS A LIFE-OR-DEATH
QUESTION.
IN THE INTEREST OF TIME, I AM
GOING TO MOVE US ONTO THE BREAK.
REALLY WANT TO THANK Dr.
EDWARDS AND Dr. MORRIS, AGAIN,
FOR GETTING THIS WORKSHOP OFF TO
A EXCELLENT START AND A GREAT
MORNING.
I HAVE BEEN ASKED TO REMIND
EVERYONE TO PLEASE STAY
CONNECTED.
EVEN AS YOU MOVE AWAY FOR THE
BREAK.
AND THEN WE WILL SEE YOU ALL
BACK HERE AT 1:30 P.M.
THANK YOU, VERY MUCH.
>>WELCOME BACK
EVERYONE, I HOPE YOU HAD A NICE
BREAK.
I'M ADAM POLITIS AND I'M THE
ASSISTANT DIRECTOR OF THE
DEPOSIT TEE AND I WILL MODERATE
OUR SECOND SESSION ON DIS ACT
AND HEALTH DISPARITIES RESEARCH.
AS A DISABLED PERSON I'M
THRILLED THAT WE AT NIH ARE
HOLDING THIS WORKSHOP AND YOU
ARE HERE TODAY TO PRECIPITATION.
I'M WHITE WITH SHORT BROWN HAIR,
DARK GRAY SUIT JACKET AND BLUE
BLUE GLASSES.
THIS AFTERNOON HE HAVE WE HAVE
THREE EX SPEAKERS.
OUR FIRST IS Dr. JEAN HILL.
Dr. HALL IS THE DIRECTOR OF
THE TEENS UT FOR HEALTH AND
DISABILITY POLICY STUDIES AND
RESEARCH ON INDEPENDENT LIVING
AT THE UNIVERSITY OF KANSAS HER
RESEARCH EXAMS THE DISABILITIES,
HEALTH, EMPLOYMENT, AND
COMMUNITY PARTICIPATION.
IN ADDITION TO LEADING THE
PROJECT ADMINISTERING THE
NATIONAL SURVEY ON HEALTH AND
DISABILITY, SHE DISTRICTS
FEDERAL AND STATE POLITICS WITH
HEALTH, EMPLOYMENT AND COMMUNITY
PARTICIPATION WITH PEOPLE WITH
DISABILITIES, A PRIORITY IS TO
GIVE VOICE TO PEOPLE WITH
DISABILITY AND THEIR EXPERIENCES
WITH ACCESSING HEALTHCARE.
AND LIVING IN THEIR COMMUNITIES.
Dr. HALL IS NOT ABLE TO BE
WITH US BUT PRE-RECORDED HER
PRESENTATION.
LET'S ALL ENJOY Dr. HALL'S
PRESENTATION.
HELLO, EVERYONE.
THANK YOU FOR BEING HERE TODAY
TO LEARN ABOUT THE IMPORTANT
TOPIC OF ABLEISM IN MEDICINE.
I WISH I COULD BE WITH YOU THERE
IN-PERSON, BUT PLEASE E-MAIL IF
YOU HAVE ANY QUESTIONS THAT
AREN'T ANSWERED BY OTHER
SPEAKERS.
MY E-MAIL IS BELOW.
MY NAME IS JEAN HALL I'M THE
DIRECTOR OF THE INSTITUTE FOR
HEALTH AND DISABILITY POLICY
STUDIES AT UNIVERSITY OF KANSAS.
I'M A WHITE WOMAN WITH
LIGHT-BROWN HAIR, WEARING BLUE
GLASSES AND A BLUE SWEATER AND I
SELF-IDENTIFY AS A PERSON WITH A
DISABILITY.
I'M GOING TO TALK TO YOU TODAY
ABOUT HEALTH PISS TAR TEASE
AMONG PEOPLE WITH DISABILITIES
AND I'M LOOKING BENEATH THE
SURFACE AND LOOKING AT THE ROLE
OF ABLEISM IN THESE DISPARITIES.
SO THIS IS THE BIG PICTURE.
THIS IS A GRAPHIC AND IT FIRST
SHOWS THAT MORE THAN PEOPLE WITH
DISABILITIES HAVE THE SAME
GENERAL HEALTHCARE NEEDS AS
ANYONE ELSE BUT THEY'RE TWO
TIMES MORE LIKELY TO FIND
HEALTHCARE PROVIDER SKILLS AND
FACILITIES INADEQUATE AND THEY
ARE THREE TIMES TO BE DENIED
HEALTHCARE AND THAT HAPPENS EVEN
IN THE UNITED STATES AND WE'LL
HEAR MORE ABOUT THAT.
THEY ARE FOUR TIMES TO BE LIKELY
TO BE TREATED BAD' IN THE
HEALTH-CARE SYSTEM.
OVER ALL, ABOUT HALF OF PEOPLE
WITH DISABILITIES CANNOT AFFORD
HEALTHCARE AT ALL.
AND THEY ARE 50% MORE LIKELY TO
SUFFER CATASTROPHIC HEALTH
EXPENDITURES PUSHING THEM AND
THEIR FAMILIES INTO A LIFE OF
POVERTY.
SO REHABILITATION AND ASSISTED
DEVICE HELP PEOPLE WITH
DISABILITIES TO BE INDEPENDENT
AND GLOBALLY 970 MILLION PEOPLE
NEED GLASSES OR LOW VISION AIDS.
75 MILLION PEOPLE NEED A
WHEELCHAIR BUT 5% TO 15% HAVE
ACCESS TO ONE.
EVEN IN THE UNITED STATES,
PEOPLE WITH DISABILITIES WHO
NEED A WHEELCHAIR HAVE TROUBLE
ACCESSING THEM OR ACCESSING ONES
THAT NEED THEIR NEEDS.
PARTICULARLY CHILDREN WHO
OUTGROW WHEELED CHAIRS.
466 PEOPLE HAVE DISABLING
HEARING LOSS AND PRODUCTION OF
HEARING AIDS ONLY MEETS 10% OF
GLOBAL NEED AND 3% OF NEED IN
DEVELOPING COUNTRY.
TO MAKING ALL HEALTHCARE
SERVICES ACCESSIBLE TO PEOPLE
WITH DISABILITIES IS ACHIEVABLE
AND IT WOULD REDUCE THESE
UNACCEPTABLE HEALTH DISPARITIES
THAT WE'LL TALK ABOUT.
SOME OF THE WAYS THAT WE CAN DO
THAT WOULD BE FROM A PHYSICAL
BARRIERS TO HEALTH FACILITIES,
INFORMATION AND EQUIPMENT.
MAKE HEALTHCARE MORE AFFORDABLE,
TRAIN ALL HEALTHCARE WORKERS AND
DISABILITY ISSUES AND INCLUDING
DISABILITY RIGHTS.
INVEST IN CIRCUMSTANCES SUCH AS
REHABILITATION.
I'D LIKE TO PAUSE THERE FOR A
MINUTE, EVEN WHEN HEALTH
INSURANCE IN THIS COUNTRY DOES
PAY FOR REHABILITATION, IT
FAVORS REHABILITATION THAT
RESTORES FUNCTION LIKE AFTER AN
ACCIDENT OR AN ILLNESS, OVARY
HABITATION THAT MAINTAINS
FUNCTION FOR A PERSON WITH
PARALYSIS WHO NEEDS THERAPY TO
PREVENT SPASTICITY AND RATHER
THAN MAINTAINING THE FUNCTION
THAT PEOPLE WITH DISABILITIES
NEED.
THERE'S A TASTE OF ABILITYISM IN
OUR INSURANCE SYSTEM AND WE'LL
TALK MORE ABOUT THAT.
IN THE UNITED STATES, 61 MILLION
ADULTS LIVE WITH A DISABILITY
WHICH IS MORE THAN 1/4
INDIVIDUALS OR ADULTS WHO LIVE
IN THIS COUNTRY WITH A
DISABILITY.
MOST ASSUREDLY, YOU KNOW SOMEONE
WITH A DISABILITY.
AT 26% OF THE POPULATION, PEOPLE
WITH DISABILITIES ARE THE SINGLE
LARGEST MINORITY GROUP IN OUR
COUNTRY AND THEY'RE THE ONLY
MINORITY GROUP THAT ANY PERSON
CAN JOIN AT ANY TIME SO ANY
PERSON CAN BECOME A PERSON WITH
A DISABILITY DUE TO AN ACCIDENT
AND ILLNESS AND SOMETHING ELSE
AND IT'S NOT JUST OTHER PEOPLE.
NEXT SLIDE, PLEASE.
SO, IF YOU TAKE NOTHING ELSE
AWAY FROM OUR PRESENTATION
TODAY, OTHER THAN THIS NEXT
STATEMENT, I WILL BE HAPPY JUST
BECAUSE A PERSON HAS A
DISABILITY, DOES NOT MEAN THAT
THEY ARE IN POOR HEALTH.
IF YOU'VE SEEN A PARALYMPICS,
YOU'VE SEEN WORLD-CLASS ATHLETES
WHO IN TOP-PEAK PHYSICAL
CONDITION.
SO, HAVING POOR HEALTH HAS
NOTHING TO DO WITH HAVING A
DISABILITY, IT HAS TO DO WITH
ALL THE OTHER FACTORS RELATED TO
GETTING HEALTHCARE FOR PEOPLE.
HEALTH DISPARITIES ARE LARGE IN
THIS GROUP.
THIS TABLE COMPARES AMERICANS
WITH DISABILITIES TO AMERICANS
WITHOUT DISABILITIES ON A
VARIETY OF MEASURES AND I WANT
TO POINT OUT DATA IF THIS TABLE
COMES FROM THE CDC, DISABILITY
AND HEALTH DATA SYSTEM AND
THERE'S A LINK TO THAT DATA
SYSTEM AT BOTTOM OF THE SLIDE
AND THIS IS A REALLY COOL
DASHBOARD WHERE YOU CAN ACCESS
DATA ON HEALTH DISPARITIES FOR
PEOPLE WITH DISABILITIES AND
USING A VARIETY OF DEMOGRAPHICS
AND OR LOOKING AT THE STATE
LEVEL AND WE'RE JUST, IF YOU
EXPLORED IT, IT GIVES YOU A GOOD
IDEA OF THESE DISPARITIES.
SO, THIS TABLE WE SEE THAT
AMERICANS WITH DISABILITIES ARE
ABOUT FIVE TIMES MORE LIKELY
THAN AMERICANS WITHOUT
DISABILITY TO REPORT FAIR OR
POOR HEALTH AND SIX TIMES MORE
LIKELY TO REPORT 14 OR MORE
PHYSICALLY UNHEALTHY DAYS IN THE
LAST 30 DAYS AND THEY'RE ABOUT
FOUR TIMES MORE LIKELY TO REPORT
14 OR MOR MENTALLY UNHEALTHY
DAYS IN THE PAST 30 DAYS.
THIS LOOKS AT DISEASE PREVALENCE
COMPARED TO THOSE WITHOUT.
IN EVERY CATEGORY AMERICANS WITH
DISABILITIES HAVE HIGHER RATES
OF THESE CONDITIONS.
AMERICANS WITH DISABILITIES ARE
FIVE TIMES MORE LIKELY TO REPORT
HAVING HAD I STROKE AND THREE
TIMES MORE LIKELY TO REPORT
HEART DISEASE, ALMOST TWICE AS
LIKELY OBESITY OR HYPERTENSION.
TWICE AS LIKELY TO REPORT ASTHMA
OR DIABETES.
THREE TIMES MORE LIKELY TO
REPORT HAVING DEPRESSION AND
MORE THAN TWICE AS LIKELY TO
SMOKE.
I CHOSE THESE CONDITIONS AGAIN
FROM THE DISABILITY AND HEALTH
DATA SYSTEM BECAUSE THESE ARE
CONDITIONS THAT ARE LARGELY
PREVENTABLE WITH GOOD ACCESS TO
PREVENTATIVE CARE.
UNFORTUNATELY, MANY PEOPLE DON'T
HAVE THAT ACCESS AND MANY PEOPLE
ON DISABILITIES DON'T HAVE THAT
ACCESS.
AND I ALSO THREW IN THE SMOKING
PIECE BECAUSE RESEARCH HAS SHOWN
THAT PHYSICIANS ARE LESS ASK
PEOPLE WITH DISABILITIES WHETHER
THEY SMOKE AND LESS LIKELY TO
RECOMMEND STOP SMOKING THAN
PATIENTS WITHOUT DISABILITIES.
SO WHAT ARE SOME OF THOSE
BARRIERS OF HEALTH.
THERE ARE BARRIERS FOR EVERYONE
TO HEALTHCARE AND ONE WAY OR
ANOTHER BUT THERE ARE ADDITIONAL
BARRIERS OF EXPERIENCE BY PEOPLE
WITH DISABILITIES.
THEY CAN BE CATEGORIZED INTO
THREE BROAD GROUPS.
ENVIRONMENTAL, PROGRAMMATIC AND
ATTITUDE NAL.
ENVIRONMENTAL BARRIERS ARE LACK
OF FACILITIES THAT MEET
ACCESSIBILITY GUIDELINES AND
THIS IS NOT COMPLICATED STUFF
IT'S NOT ROCKET SCIENCE AND FOR
EXAMPLE, MANY EXAM ROOMS DON'T
HAVE A SET OF ROLL ON CALLS FOR
SOMEONE WHO USES A WHEELCHAIR OR
SOMEONE WHO USES A WALK TORE GET
ON TO BE WEIGHED.
EXAM TABLES ARE ANOTHER BIG
PROBLEM.
MY MOTHER AND LATER STAGES OF
HER LIFE USED A WALKER AND SHE
HAD BALANCE ISSUES AND JUST
TAKING THAT ONE BIG STEP TO GET
ONTO THE EXAM TABLE WAS
DIFFICULT FOR HER AND THE EXAM
TABLE WAS SO NARROW SHE WAS
SCARED SHE WAS GOING TO FALL
OFF.
MAKING EQUIPMENT MORE ACCESSIBLE
TO PEOPLE WITH DISABILITIES,
WOULD REALLY HELP THEM ACCESS
THE CARE THEY NEED.
LACK OF AFFORDABLE AND
ACCESSIBLE TRANSPORTATION IS A
HUGE ISSUE FOR PEOPLE WITH
DISABILITIES.
IT REFLECTS TH PACKED THEY EXPET
EVERYONE TOTHE FACT EVERYONESHO.
WE'LL TALK MORE ABOUT THAT.
LACK OF KNOWLEDGEABLE
PROFESSIONALS IS ANOTHER
BARRIER.
LACK OF FINANCIAL RESOURCES
AGAIN IS HUGE.
PEOPLE WITH DISABILITIES HAVE
HEALTHCARE COSTS THAT AVERAGE
FOUR TO SEVEN TIMES THAT OF
PEOPLE WITHOUT DISABILITIES.
PROBLEMATICALLY, LACK OF
SUFFICIENT APPOINTMENT TIMES TO
ACCOMMODATE PATIENTS WITH SPEECH
LIMITATIONS IS AN ISSUE.
AND YOU'LL USE MY MOM.
SHE HAD A PROFOUND HEARING LOSS
AND DOCTORS HAD TO SPEAK LOUDLY
AND SLOWLY AND IT WAS LONGER
APPOINTMENTS FOR HER AND
PHYSICIAN ALSO SEE AS MANY
PATIENTS IN A PARTICULAR DAY BUT
THE REALITY IS THIS NEEDS TO
ACCOMMODATE THE NEEDS OF ALL
PATIENTS AND IF IT'S GOING TO
TAKE EXTRA TIME WE NEED TO FIND
A WAY TO DO THAT.
ANOTHER HUGE SYSTEMS.
SO OFTEN NOW THE ONLY WAY TO
ACCESS YOUR DOCTORS AND YOUR
DOCTOR STAFF, THROUGH THE
PATIENT PORTAL AND IF IT'S NOT
ACCESSIBLE AND THE PEOPLE WITH
DISABILITY DISABILITIES WHO USES
A CREAN READER.
THEY DON'T HAVE THE CAPACITY TO
ASK FOR A REFILL AND SCHEDULE AN
APPOINTMENT EASILY AND TO
FOLLOW-UP ON LAB RESULTS AND
THINGS LIKE THAT SO THESE
ON-LINE SYSTEMS ARE NOT
ACCESSIBLE AND LACK OF HEALTH
INFORMATION AND FORMATS AND USE
MY MOM ONE LAST TIME AND SHE
ALSO HAD MACULAR DEGENERATION
AND I WAS WITH HER WHEN SHE WAS
SEE A RETINA SPECIALIST AND HE
DID THE EXAM AND HE WAS TALK TO
GO HER AFTERWARDS AND HE TOLD
HER THAT HER DEGENERATION
PROGRESSED AND SHE WAS LEGALLY
BLIND AND HE HANDED HER A BRUSH
ERROR WRITTEN IN 10 POINT FONT
AND WHICH THE IRONY WAS JUST
ALMOST LAUGHABLE AND THAT HE
EXPECTED HER TO SOMEHOW
MAGICALLY IN HER LEGAL BLINDNESS
TO BE ABLE TO READ THIS SMALL
PRINT PRO SURE ABOUT HER
CONDITION AND SO, REALLY, MAKING
INFORMATION ACCESSIBLE AND
PEOPLE WITH DISABILITIES IN A
FORMATS IS ESSENTIAL IF THEY'RE
GOING TO BE ABLE TO IMAGINE AGE
THEIR HEALTH LIAR EVERYONE ELSE.
MOST IMPORTANTLY THERE ARE
ATTITUDE NAL BARRIERS TO HELP
FOR PEOPLE WITH DISABILITIES.
AND WHAP UNDERSTAND LIES THAT IS
THAT THERE'S A BELIEVE THAT
PEOPLE WITH DISABILITIES CANNOT
BE HEALTHY OR THAT THEY LIVE
LIFE OF SUCH LOW QUALITY THAT
HEALTH IS LESS IMPORTANT.
AND I KNOW NO ONE THINKS THEY
FEEL THAT WAY.
BUT WE SAW THIS SO CLEARLY
DURING THE PANDEMIC AND I WANT
TO SHOW YOU SOME EXAMPLES.
SO THE NEXT SLIDE, PLEASE, THESE
ARE ALL HEADLINES FROM REPUTABLE
NATIONAL MEDIA SOURCES THAT THEY
FILE A IN THE COVID-19 PANDEMIC
AND PEOPLE MAY BE DENIED LIFE
SAVING CARE UNDER THESE PLANS
AND THIS ONE SAYS OREGON
HOSPITALS DIDN'T HAVE SHORTAGES
WERE WERE IT'S A IMPORTANT
QUESTION AND I THINK PEOPLE ARE
WAITING FOR ANSWERS TO THAT
QUESTION AND I DON'T THINK THERE
ARE ANY.
THE LAST HEADLINE SAYS NATIONAL
COUNCIL ON DISABILITY.
MICHAEL HICKSON WAS A HUSBAND
AND FATHER OF FIVE AND HE LIVED
IN TEXAS AND WENT TO THE
HOSPITAL FOR A COVID-19
INFECTION AND AT SOME POINT, THE
DOCTOR DECIDED THAT THEY WOULD
NO LONGER TREAT HIS INFECTION
AND THEY DECIDED TO PUT HIM INTO
HOSPICE CARE AGAINST THE
EXPRESSED DESIRES OF HIS LIFE
WHO ASKED HE CONTINUE TO BE
CARED FOR AND TREATED FOR HIS
COVID-19 INFECTION.
HE DID DIE LEAVING BEHIND HIS
WIFE AND FIVE CHILDREN.
NEXT SLIDE, PLEASE.
SO, THE SLIDE JUST LISTED SOME
OF THE PANDEMIC RELATED
DISPARITIES FOR PEOPLE WITH
DISABILITIES.
PEOPLE WITH DISABILITIES AS WE
SAW IN THIS HEADLINE WERE REAGED
OUT OF HEALTHCARE ON THE BASIS
OF DISCRIMINATORY ALGORITHMS AND
HAVING LENT LATERS CON IF TASE
ITPHYSICAL INDICATED.
IF A PERSON WHO USED A PERSONAL
VENTILATOR WENT TO THE HOSPITAL
FOR COVID TREATMENT, THAT THEIR
PERSONAL VENTILATOR COULD BE
CONFISCATED FROM THEM AND USED
FOR TREATMENT OF SOMEONE WHO WAS
MORE WORTHY OF IT, AN ABLE
BODIED PERSON.
PEOPLE WITH DISABILITIES ARE
OFTEN NOT PRIORITIZED FOR EARLY
VACCINES THOUGH THEY WERE AT
HIGH-RISK FOR INFECTION IN
DEATH.
PEOPLE WHO USE ATTENDED CARE IN
THEIR HOMES W HOME WERE UNABLE D
WORKERS SO PEOPLE WHO RELY ON
WORKERS TO HELP THEM WITH
ACTIVITIES OF DAILY LIVING LIKE
BATHING AND EATING COULD NOT GET
WORKERS TO COME INTO THEIR HOMES
BECAUSE OF THE FEAR THEY MIGHT
GET THE VIRUS.
SO, BECAUSE THOSE WORKERS WERE
NOT PRIORITIZED FOR VACCINES
THEY DIDN'T REPORT TO WORK AND
PEOPLE WITH DISABILITIES AND
MANY CASES WERE LEFT LYING IN
THEIR BEDS, SOMETIMES IN THEIR
OWN EXCREMENT WITHOUT FOOD OR
WATER BECAUSE THEIR WORKERS
WOULDN'T SHOW UP.
IT WAS AWFUL.
RELATE TO THAT WEB SITES FOR
SCHEDULING VACCINES WERE
INACCESSIBLE AND MANY PEOPLE
WITH DISABILITIES DON'T HAVE
INTERNET ACCESS ANYWAY.
THERE WAS A STUDY THAT SHOWED
EVERY VACCINE SITE IN THE
COUNTRY WAS INACCESSIBLE FOR
PEOPLE WHO WERE BLIND AND IF YOU
DON'T HAVE INTERNET ACCESS,
THAT'S THE ONLY WAY YOU COULD
SCHEDULE A VACCINE APPOINTMENT
IT WAS PROBLEMATIC.
DESPITE LAWS TO SUPPORT
COMMUNITY LIVING FOR PEOPLE WITH
DISABILITIES, MANY ARE FORCED
INTO CONGREGATE CARE WITH DEATH
RATES WERE HIGH.
PEOPLE IN NURSING HOMES
EXPERIENCED TERRIBLE COVID
OUTCOMES AND INFECTION RATES AND
DEATHS.
BUT I DON'T THINK A LOT OF
PEOPLE ONLY APPRECIATE THAT MANY
OF THE PEOPLE LIVING IN THOSE
NURSING HOMES ARE CONGREGATE
SETTINGS ARE YOUNGER PEOPLE WITH
DISABILITIES SO THEY WERE
AFFECTED AS THE OLDER POPULATION
WAS.
SO GETTING BACK TO BROADER
HEALTH DISPARITIES WITH PEOPLE
WITH DISABILITIES NOT DURING THE
PANDEMIC.
THERE ARE MANY THINGS TO LOOK
AT.
THIS IS DATA FROM THE NATIONAL
HEALTH INTERVIEW SURVEY AND THE
RESPECT OR SURVEILLANCE SYSTEM,
THE NATIONAL CRIME AND
VICTIMIZATION SERVICE AND THE
HOUSE OF DISABILITY AND
EMPLOYMENT POLICY.
THE FIRST IS DO NOT GET NEEDED
MEDICAL CARE DUE TO COST AND
PEOPLE WITH DISABILITIES ARE
THREE TIMES MORE LIKELY TO NOT
GET NEEDED MEDICAL CARE DUE TO
COST IN THIS COUNTRY.
WOMEN WHO ARE CURRENT WITH THEIR
MAMMOGRAMS OR WOMEN CURRENT WITH
THEIR PAP TEST, WOMEN WITH
DISABILITIES LAG BEHIND ON BOTH
OF THOSE MEASURES COMPARED TO
WOMEN WITHOUT DISABILITIES.
PART OF THAT CAN BE
TRANSPORTATION, BUT PART OF IT
CAN BE THAT EQUIPMENT IS NOT
ACCESSIBLE TO THEM AND ANY OF
YOU HAVE HAD TO GET A MAMMOGRAM,
YOU HAVE TO STAND UP AND PUT
YOUR ARMS AROUND THE MAMMOGRAM
MACHINE AND IF YOU USE A
WHEELCHAIR OR WHATEVER REASON
CANNOT STAND UP AND FOR WHATEVER
REASON NOT WRAP YOUR HANDS
AROUND THE MACHINE, YOU MAY NOT
NOT ABLE TO GET A GOOD
MAMMOGRAM.
SIMILARLY WITH THE A PAP TEST,
IF IF YOU CAN'T ACCESS THE EXAM
TABLE OR THE EQUIPMENT THAT YOU
OTHERS FOR A PAP TEST YOU MAY
NOT GET A PAP TEST.
THE NEXT LINE IS SHOWS PEOPLE
WITH DISABILITIES ARE ABOUT FOUR
TIMES MORE LIKELY TO BE VICTIMS
OF VIOLENT CRIMES WHICH PROBABLY
RESULTS IN MORE PHYSICAL HEALTH
NEEDS AND PROBABLY MORE MENTAL
HEALTH NEEDS THAN FOR PEOPLE
WITHOUT DISABILITIES.
THIS IS BEING ABLE TO ACCESS
MEDICAL PROFESSIONALS THAT WAY.
BUT ALSO DURING THE PANDEMIC,
TELEHEALTH WAS A REALLY POPULAR
WAY TO GET HEALTH SERVICES
WITHOUT RISKING WAITING IN A
DOCTOR'S OFFICE AND THAT WAS
GREAT AND I CAN'T SAY ENOUGH
GOOD THINGS ABOUT HOW MUCH
TELEHEALTH HELPED PEOPLE WITH
DISABILITIES ACCESS HEALTHCARE
IN A WAY THEY HADN'T BEEN ABLE
TO IN THE PAST, BECAUSE
TRANSPORTATION IS A BARRIER FOR
THEM AND HOWEVER, A LOT OF
PEOPLE WITH DISABILITIES ARE NOT
ABLE TO TAKE ADVANTAGE OF
TELEHEALTH OPPORTUNITIES BECAUSE
THEY DON'T HAVE HOME INTERNET.
SO WE NEED TO MAKE SURE THAT
TELEHEALTH IS AVAILABLE NOT ONLY
OVER THE INTERNET AND WE NEED TO
BE AWARE OF WAYS TO INCREASE
ACCESS TO HOME INTERNET OR
PEOPLE WITH DISABILITIES.
THE NEXT LINE IS ABOUT ADULT
EMPLOYMENT AND EMPLOYMENT FOR
PEOPLE WITH DISABILITIES IN THIS
COUNTRY HAS ALWAYS BEEN BAD.
IT'S ALWAYS BEEN LOW.
YOU CAN SEE THE HUGE DISPARITY
OF 50 PERCENTAGE POINT BETWEEN
PEOPLE WITH AND WITHOUT
DISABILITIES.
YOU KNOW, EMPLOYMENT IS SUCH AN
IMPORTANT PART OF SOCIAL
PARTICIPANTS IN OUR COUNTRY AND
PEOPLE WITH DISABILITIES DON'T
HAVE THE SAME OPPORTUNITIES FOR
THAT BUT ALSO, EMPLOYMENT IS A
VERY IMPORTANT GATEWAY TO HEALTH
INSURANCINSURANCE IN OUR COUNTR.
PEOPLE WHO ARE NOT EMPLOYED
DON'T HAVE ACCESS TO
EMPLOYER-BASED HEALTH INSURANCE
WHICH IS THE DESIRED KIND OF
INSURANCE TO HAVE IN OUR
COUNTRY.
FOR MANY PEOPLE WITH
DISABILITIES, THEIR LACK OF A
JOB LOW INCOME FORCES THEM ON TO
MEDICAID AND MEDICAID CAN BE
GOODS INSURANCE BUT THERE ARE
PROBLEMS WITH IT THAT WE'LL TALK
ABOUT AND SOME PEOPLE WITH
DISABILITIES NEED MEDICATION AND
MEDICAID COVERS HOME COMMUNITY
BASED SERVICES AND AND THE
PROBLEM IS, SOMETIMES PEOPLE
WITH DISABILITIES ARE LOCKED
INTO MEDICAID AND NOT WORKING
LOCKED INTO POVERTY IN ORDER TO
BE ABLE TO ACCESS THE HEALTHCARE
THAT THEY NEED AND WE'LL TALK A
LITTLE BIT ABOUT THAT.
AND FINALLY, YOU KNOW, WITH THAT
LOW EMPLOYMENT RATE IT'S NOT
SURPRISING THAT PEOPLE WITH
DISABILITIES ARE ABOUT THREE
TIMES MORE LIKELY TO HAVE
FAMILIES THAT LIVE BELOW THE
FEDERAL POVERTY LEVEL.
NEXT SLIDE, PLEASE.
I'M GOING TO SHIFT GEARS AND
MOVE AWAY AND TALK A LITTLE BIT
ABOUT PERSONAL EXPERIENCES AND
THESE ARE QUOTES FROM KANCARE.
IT'S THE NAME FOR OUR KANSAS
MEDICARE PROGRAM.
IT HAS THREE MANAGED CARE
ORGANIZATIONS AND THESE QUOTES
ARE ABOUT TRANSPORTATION.
THE FEDERAL GOVERNMENT REQUIRES
STATE MEDICATE PROGRAMS FOR NON
MEDICAL TRANSPORTATION TO
MEDICAID AND TO BE ABLE TO
ACCESS THEIR HEALTH APPOINTMENTS
AND THESE ARE QUOTES ABOUT
PEOPLE'S EXPERIENCES TRYING TO
USE THAT NON EMERGENCY MEDICAL
TRANSPORTATION.
SO THE FIRST QUOTE SAYS, WHEN I
COULD USE IT THEY RAN LATE A
LOT.
I DON'T USE IT.
I CAN'T USE IT BECAUSE THEY
CHANGED THEIR POLICIES AND THEY
ONLY ALLOW ONE ADULT AND ONE KID
IN A TAXI.
I HAVE TWO YOUNGER KIDS ONE WITH
AUTISM.
I CAN'T LEAVE THEM HOME ALONE.
THE NEXT QUOTE SAYS, THE
TRANSPORTATION PEOPLE DON'T
TRANSFER ME CORRECTLY AND I'VE
GOTTEN HURT.
SO HERE IS THE IRONY OF A PERSON
WITH A DISABILITY TRYING TO GET
TO THE DOCTOR AND JUST TO
PROCESS OF GETTING A HAS
RESULTED IN AN INJURY FOR THEM
MY DOCTOR CHANGED MY APPOINTMENT
TIME BUT THE ORGANIZATION WON'T
CHANGE THE PICK UP TIME BECAUSE
IT'S NOT THREE DAYS NOTICE.
I WANT TO SHOW BARRIERS TO
TRANSPORTATION WHEN
TRANSPORTATION IS PROVIDED BY
MEDICAID AND ALSO BECAUSE WE
OFTEN HEAR WE AS RESEARCHER HEAR
FROM MEDICAL PROVIDERS THAT THEY
DON'T LIKE TO HAVE PATIENTS WITH
DISABILITIES BECAUSE OH THEY'RE
ALWAYS LATE FOR THEIR
APPOINTMENTS OR THEY DON'T SHOW
UP, THEY JUST BLOW OFF THEIR
APPOINTMENT.
THAT IS A PIECE OF ABLEISM THAT
I WANT PEOPLE TO ADDRESS IN
THEIR OWN HEADS AND THEY REALIZE
THERE'S A REAL SYSTEM I CAN
REASONS WHY THAT'S HAPPENING AND
RATHER THAN GETTING MAD AT THE
PERSON WITH A DISABILITY WHO IS
TRYING THEIR BEST TO GET TO THE
DOCTOR MAYBE TRY TO CHANGE THE
SYSTEM THAT'S CREATING THOSE
BARRIERS.
THESE QUOTES AND FIRST PERSON
SAYS, THEY WILL NOT PAY FOR A
CONCENTRATOR THAT I NEED TO GO
TO FOR FOLKS.
I NEED TO GET EXERCISE TO
CONTROL MY DIABETES.
HERE IS A PERSON WHO KNEW THEY
NEEDED TO EXERCISE TO GET THEIR
DIABETES UNDERSTAND CONTROL AND
THEY WANT TODAY DO THAT AND THEY
APPROACHED MEDICAID AND MEDICAID
WOULDN'T PROVIDE THE EQUIPMENT
THEY NEEDED AND IT WAS
HEALTHCARE EQUIPMENT.
THE NEXT QUOTE IS, THEY COVER
CATHETERS BUT THE GEL FOR
CATHETER INSERTION IS NOT
COVERED.
IT'S FIVE OR SIX DOLLARS A TUBE
BUT IT MAKES NO SENSE.
I'LL SPEND A MINUTE HERE FOR A
FEW REASONS.
FIVE OR SIX DOLLAR A TUBE
DOESN'T SOUND MUCH BUT PEOPLE
WITH DISABILITIES ARE LIVING ON
LESS THAN A THOUSAND DOLLARS A
MONTH AND FIVE OR SIX DOLLARS A
TUBE CAN BE A BIG DEAL.
IF YOU ADD IT UP WITH ALL THE
OTHER THINGS THAT THEY HAVE TO
PAY FOR OUT OF THAT VERY LIMITED
INCOME.
ALSO, YOU ARE INARY TRACT
INFECTIONS AND BLADDER
INFECTIONS ARE A BIG DEAL.
THEY KILL PEOPLE.
I HAD A GOOD FRIEND AND
COLLEAGUE WHO WAS PARAPLEGIC WHO
HAD A YOU URINARY TRACT I AM FT
INFECTION.IT'S PENNY WISE AND PD
FOOLISH AND NOT THE GEL AND IT'S
REALLY JUST INHUMANE.
AND FINALLY, THE LAST QUOTE, I
USE A WHEELCHAIR AND GET
PRESSURE SORES ON MY FEET.
I NEED AN INSERT TO STOP THE AND
I WAIT AND GO TO THE DOCTOR FOR
THEM TO FIX THE AFTERMATH.
AGAIN, SOMEONE TRYING TO DO THE
RIGHT THING AND THE SYSTEM NOT
ALLOWING THEM TO.
AND I PUT THESE THREE QUOTES IN
HERE BECAUSE ANOTHER THING WE
HEAR FROM PROVIDERS IS, I DON'T
LIKE TO HAVE PATIENTS WITH
DISABILITIES BECAUSE THEY DON'T
FOLLOW THROUGH ON MY
RECOMMENDATIONS AND THEY'RE NOT
COMPLIANT WITH THE ORDERS THAT I
GAVE THEM.
I JUST WANT TO PUT THAT INTO
CONTEXT FOR PEOPLE WITH
DISABILITIES AND THEY ARE DOING
THE BEST THEY CAN WITH THE
COVERAGE THAT THEY HAVE AND WITH
THE INCOME THAT THEY HAVE.
SO, I THINK I'M GOING TO END
THERE.
NEXT SLIDE, PLEASE.
THE FIRST IS A QUOTE IN JUDE YOU
HUMAN WHO PASSED AWAY AND JUDY
SAID, DISABILITY ONLY BECOMES A
TRAGEDY WHEN SOCIETY FAILS TO
PROVIDE THE THINGS WE NEED TO
LEAD OUR LIVES.
WELL, I PERSONALLY AGREE TOTALLY
THAT IT'S NOT A TRAGEDY TO HAVE
A DISABILITY, NOT AT ALL.
MY DIS A LOT IS PART OF WHO I
AM.
IT IS A TRAGEDY WHEN YOU ARE
DISABILITY RESULTS IN A SYSTEM
THAT DOESN'T SUPPORT YOUR NEEDS
AND IT DOESN'T RECOGNIZE YOU AS
FULLY HUMAN AND IT DOESN'T, IT
DOESN'T HESITATE TO DISCRIMINATE
AGAINST YOU SO DISABILITY IS A
TRAGEDY WHEN WE DON'T PROVIDE
THE SERVICES AND SUPPORTS THAT
PEOPLE NEED AND THE HEALTHCARE
SERVICES THAT THEY NEED.
LAST QUOTE, HOW FAR DO YOU WANT
TO TAKE THIS?
THIS IS A QUESTION THAT WAS
ASKED TO A COLLEAGUE OF MINE,
SHE IS THE GUARDIAN OF A
GENTLEMAN WITH SER RE CEREBRAL E
DOCTOR ASKED HER, ARE YOU SURE
YOU WANT US TO TREAT THIS
PERSON.
SO, MY ANSWER TO THAT QUESTION
IS, WE WANT TO TAKE THIS
CONVERSATION ABOUT EQUITY AND
ABLEISM IN MEDICINE AS FAR AS WE
NEED TO TO AFFECT REAL CHANGE.
SO, I THANK YOU FOR BEING PART
OF THAT CONVERSATION AND I LOOK
FORWARD TO WORKING WITH YOU
POTENTIALLY IN THE FUTURE TO
MAKE THOSE CHANGES SO THAT
ABLEISM IN MEDICINE DOES NOT
RESULT IN THESE TERRIBLE HEALTH
DISPARITIES THAT WE SEE.
I'M GOING TO END IT THERE.
THE LAST SLIDE IS JUST A LIST OF
REFERENCES.
IT BACKS UP SOME OF THE THINGS
THAT I TALKED ABOUT.
IF YOU HAVE QUESTIONS THAT NOT
ANSWERED BY OTHER SPEAKERS
TODAY, FELL FREE TO CONTACT ME
AND I WOULD BE HAPPY TO HAVE A
CONVERSATION WITH YOU.
THANK YOU, AGAIN.
>>Adam: ALL RIGHT.
EVEN THOUGH Dr. HALL IS NOT
HERE TODAY, I'D LIKE TO THANK
HER FOR HER EXTENT PRESENTATION.
AS SHE JUST MENTIONED, IF YOU
HAVE QUESTIONS FOR HER
PRESENTATION OR HER RESEARCH TO
FEEL FREE TO REACH OUT.
>>>ALL RIGHT.
MOVING ON OUR NEXT SPEAKER FOR
THIS SESSION IS Dr. MONICA
MITRA.
THE NANCY LUR' MARCH ASSOCIATE
PROFESSOR OF DISABILITY POLICY
AND THE LARRY INSTITUTE OF
DISABILITY POLICY AT BRANDEIS
UNIVERSITY.
BY PEOPLE WITH DISABILITIES AND
IMPACT OF DISABILITIES ON THE
HEALTHCARE UTILIZATION AND
OUTCOME.
SHE WILL PRESENT ON DISABILITY
AND REPRODUCTIVE HEALTH.
IF THERE'S TIME SHE WILL ANSWER
QUESTIONS.
THANK YOU FOR BEING HERE TODAY.
THE FLOOR IS YOURS.
>>GREAT.
AND THANK YOU FOR IN INVITING ME
AND CAN EVERYONE SEE THIS?
>>YES.
>>SO, TODAY MY NAME IS MONICA
MITRA I AM A BROWN WOMAN WITH
DARK HAIR AND WEARING A
LIGHT-GREEN JACKET AND YOUR
ACTUAL AND TODAY I'M GOING TO BE
PRESENTING ON RESEARCH THATEL
WE'VE BEEN CONDUCTING ON
PREGNANCY, PERINATAL CARE,
DISPARITIES, OUTCOMES,
DISPARITIES AND ACCESS OUTCOMES
AND AS WELL AS IN THE
EXPERIENCES AND THE NEEDS OF
DISABLED PEOPLE.
I DO WANT TO ACKNOWLEDGE THE
FUNDING THAT WE RECEIVED FROM
NIDCD AND TELL YOU THAT NICHD
FUNDING FOCUSED ON PREGNANCY AND
A PERINATAL HEALTH OF DISABILITY
WOMEN AND HAVE A DISABILITY
PEOPLE AND HAVING INSTRUMENTAL
IN THE LITERATURE AND I WILL
PRESENT SOME OF THE RESEARCH
FROM NIDLER.
SO, WE KNOW AND THIS WAS
PRESENTED AND DISCUSSED IN THE
EARLIER PRESENTATION BY Dr.
MEGAN MORRIS THAT DISABLED
PEOPLE AND THEY HAVE BEEN
RESTRICTED FROM MAKING THEIR OWN
CHOICES ABOUT STARTING FAMILIES.
A PART OF THIS IS RELATED TO THE
EUGENICS MOVEMENT.
WHERE PEOPLE WITH DISABILITIES
WERE AND AS WELL AS PEOPLE OF
COLOR, AND PEOPLE WITH
DISABILITIES, WERE INVOLUNTARILY
STERILIZED AND UNABLE TO
CONCEIVE, UNABLE T FUND THEIR ON
FAMILIES.
IN ADDITION, THE FORCES FOR
STERILIZATION WHICH CONTINUE
TODAY IN SOME SENSE, HAVE
PREVENTED DISABLED PEOPLE FROM
EXERT EXERTING THEIR REPRODUCTIE
RIGHTS FROM BECOMING PARENTS AND
STARTING FAMILIES.
I'LL DISCUSS THIS TODAY AND HOW
IT'S IMPACTING US AND PEOPLE
TODAY.
OF COURSE, THEIR STIGMA AND
DISCRIMINATION.
WHEN IT COMES TO STIGMA AND
DISCRIMINATION FROM HEALTHCARE
PROVIDERS, FROM SOCIETY AT
LARGE, FROM PUBLIC-HEALTH
PROFESSIONALS, FROM POLICIES
THAT ARE IMPACTED DISABLED
PEOPLE AND PREVENT THEM FROM
CONCEIVING, PREVENT THEM FROM
BECOMING PREGNANT AND STARTING
THEIR OWN FAMILIES.
SO, TODAY, WHAT IS THE LANDSCAPE
TODAY?
PEOPLE WITH DISABILITIES
CONTINUE TO BE DENIED OF THEIR
RIGHT TO EXPERIENCE THEIR
SEXUALITY.
TO HAVE SEXUAL RELATIONSHIPS.
AND TO FOUND AND MAINTAIN THEIR
FAMILIES.
WHAT WE SEE IS THAT PARENTS AND
PROSPECTIVE PARENTS WITH
DISABILITIES STILL FACE STIGMA
REGARDING THEIR DECISION TO HAVE
CHILDREN.
THERE'S ENOUGH EVIDENCE POINTING
TO THE HIGHER RATES OF
TERMINALLATION PARENTAL RIGHTS
THAT DISABLED PARENTS FACE.
AND WHAT IS TROUBLING IS THAT
DISABLED PARENTS RIGHTS WERE
TERMINATED BECAUSE OF PARENTAL
DISABILITY.
SO, THIS IS AGAIN PARTICULARLY
TROUBLING AND SOMETHING THAT
WE'RE TRYING TO WORK ON WITH OUR
NATIONAL CENTER FOR PARENTS WITH
DISABILITIES.
SO I'M GOING TO GIVE YOU
EVIDENCE WITH PERINATAL WOMEN
WITH DISABILITIES AND A
PERCENTAGE PART OF THIS
PRESENTATION WE WILL USE THE
WORD WOMEN TO INDICATE BECAUSE
THESE STUDIES WERE BASED ON
SECONDARY DATA COLLECTED AND
USED THE TERM WOMAN BUT WE DO
NOT IMPLY ONLY WOMAN ARE ABLE TO
BECOME PREGNANT.
SO WHILE WE SEE THAT SOCIETY AND
THE ATTITUDES TO DISABLED PEOPLE
ARE THEY SHOULD NOT BE PREGNANT,
THEY CANNOT BECOME PREGNANT, AND
THE ATTITUDES INFANTILIZED
DISABLED AND THAT THEY'RE NOT
SEXUAL.
HOWEVER, WHAT WE'VE SEEN FROM
THE DATA IS SIMILAR PROPORTIONS
OF WOMEN WITH PHYSICAL
DISABILITIES ARE PREGNANT.
HOWEVER WHEN WE DIG DEEPER AND
LOOKING AT THE MATERNAL
CHARACTERISTICS AMONG DELIVERS
TO WOMEN WITH INTELLECTUAL WHAT
WE'RE SEEING IS THAT DISABLED
WOMEN ARE MORE LIKELY TO SMOKE
DURING THEIR PREGNANCY, THEY'RE
LESS LIKELY TO BREASTFEED AT
DISCHARGE, AND THEY'RE LESS
LIKELY TO NAME THE FATHER IN THE
BIRTH CERTIFICATE AND THEY'RE
MORE LIKELY TO HAVE INADEQUATE
PRE-NATAL CARE AND THESE ALL
HAVE IMPACTS ON THE MOTHER AND
THE INFANT.
WHEN WE LOOKED AT WOMEN WITH
DEAF AND HARD OF HEARING AND WE
LOOKED AT BIRTH OUTCOMES OF
WOMEN DEAF AND HARD AND HEARING
WE FOUND A SIGNIFICANT
DISPARITY.
WE FIND THAT DISABLED WOMEN WHO
ARE DEAF AND HARD OF HEARING ARE
MORE LIKELY TO HAVE INFANTS WHO
ARE LOW BIRTH WEIGHT, VERY LOW
BIRTH WEIGHT, AS WELL AS INFANTS
WHO ARE BORN AS PRE TERM.
WE'VE ALSO LOOKED AT DATA AND
THIS IS BOTH REALLY
ADMINISTRATIVE DATA ON HOSPITAL
DISCHARGE DATA AND ON WOMEN WHO
ARE INTELLECTUAL DEVELOPMENTS AS
WELL AS WOMEN WITH OTHER
DISABILITIES AND WE FOUND
SIMILAR DISPARITIES AND IT COMES
TO THE MA TERNE AT
CHARACTERISTICS OF BIRTH
OUTCOMES.
I'M SORRY ABOUT THIS SLIDE.
WE ALSO EXAM THE PREGNANCY
COMPLICATIONS THAT WOMEN WITH
INTELLECTUAL DISABILITIES
EXPERIENCE.
WHAT WE FOUND IS COMPARED TO
WOMEN WITHOUT INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES WOMEN
WITH INTELLECTUAL DEVELOPMENT
HAVE HIGHER RISK FOR HOSPITAL
DAYS AND VISITS.
BEFORE THEY ARE GIVING BIRTH AS
WELL AS AFTER.
AND THEY'RE ALSO MORE LIKELY TO
STAY IN THE HOSPITAL LONGER.
SO, IN THIS SLIDE, THEY'RE
LOOKING IS AT HOSPITAL
UTILIZATION.
WHAT WE FOUND IS WOMEN WITH
DEVELOPMENTAL DISABILITIES ARE
SIGNIFICANTLY HIGHER RISK FOR SO
IN THIS CASE, 56% OF IDD WHO
HAVE GIVEN BIRTH HAD BOUGHT ONE
ED VISIT DURING THE PERIOD
COMPARED TO LESS THAN 30 WOMEN
WITHOUT INTELLECTUAL
DEVELOPMENTAL DISABILITIES.
WE FOUND SIMILAR DIFFERENCES
WHEN WE LOOKED AT OBSERVATIONAL
STAYS AND AS WELL AS WHEN WE
LOOKED AT NON DELIVERY HOSPITAL
STAYS.
AND WE ALSO FOUND THAT THE
AVERAGE LENS OF STATE WAS
SIGNIFICANTLY HIGHER FOR WOMEN
WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
SO SEVERE MATERNAL MORBIDITY AND
IT'S A PROBLEM IN THE UNITED
STATES WHAT WE'VE SEEN IS WOMEN
IN THE U.S. HAS HIGHER RATES OF
THAN WOMEN FROM OTHER COUNTRIES
OF SMM.
SMM IS MULTIPLE, LIFE
THREATENING OUTCOMES OF LABOR
AND DELIVERY THAT SIGNIFICANTLY
IMPACTS AN INDIVIDUAL SHORT AND
LONG-TERM HEALTH.
HOWEVER, VERY FEW STUDIES HAVE
ACTUALLY LOOKED AT SMM AMONG
WOMEN WITH INTELLECTUAL
DISABILITIES.
WHAT WE FOUND IS THAT WOMEN WITH
INTELLECTUAL AND DEVELOPMENT
DISABILITIES ARE THREE AND A
HALF TIMES HIGHER RISK OF SMM
COMPARED TO NON WOMEN WITHOUT
INTELLECTUAL AND DEVELOPMENT
DISABILITIES.
WHEN WE WERE ADJUSTED FOR CO
VARIANTS, WE WERE TWICE GREATER
RISK OF SMM COMPARED TO THEIR
PEERS WITHOUT INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
WE ALSO EXAMINED MATERNAL
MORTALITY.
SO WE ADJUSTED FOR
SOCIOECONOMIC, HOSPITAL LEVEL
AND CLINICAL CHARACTERISTICS AND
WE FOUND THAT WOMEN WITH IDD
WERE TWO TIMES AT RISK FROM
MATERNAL MORTALITY COMPARED TO
WOMEN WITHOUT INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
WE LOOK AT DISABILITIES AND BY
RACE ETHNICITY.
AND WHAT WE FOUND IS THAT
SIGNIFICANTLY HIGHER RATES OF
SMM FOR WOMEN WITH IDD WHO WERE
NON-HISPANIC AND BLACK.
WHO WERE HISPANIC AND
NON-HISPANIC OF OTHER RACES
COMPARED TO WOMEN WHO WERE
WHITE, NON-HISPANIC AND
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES.
WHEN WE LOOKED AT THE UNADJUSTED
RISK RATIO AND THE ADJUSTED RISK
RATIOS WE FOUND ASTOUNDING
DIFFERENCES FOR SMM BETWEEN THE
DIFFERENT RACIAL ETHNIC MINORITY
GROUPS AND NON-HISPANIC WHITE
WOMEN WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
I JUST WANT TO POINT OUT THESE
DATA WE'RE USING THE HEALTHCARE
COST UTILIZATION PROJECT DATA.
WE'RE ALSO CONDUCTING DATA ON
MATERNAL MORTALITY AMONG WOMEN
OF DISABILITY BY THEIR RACE AND
ETHNICITY.
THIS DATA IS REALLY SHOCKING.
WHAT WE'RE SEEING IS AGAIN WOMEN
WITH NON-HISPANIC AND BLACK,
WOMEN WHO ARE HISPANIC AND
NON-HISPANIC OTHER ARE
RACE/ETHNICITY ARE SIGNIFICANTLY
HIGHER RISK FOR MATERNAL
MORTALITY AND WHEN WE LOOK AT
THE ADJUST FOR CO VARIANTS
INCLUDING AGE, INSURANCE, MEDIUM
HOUSEHOLD AND TEACHING STATUS
AND HOSPITAL REGION AS WELL AS
THE ADMISSION WE FIND AGAIN
THESE DISPARITIES REMAIN.
SO I WANT TO MOVE TO PIVOT TO
UNDERSTANDING WHY THESE
DISPARITIES ARE HAPPENING.
SO WE LOOK AT SURVEY DATA THE
FINDING IS THESE DISPARITIES
WHETHER IT'S SEVERE MATERNAL
MORTALITY WHETHER IT'S SEVERE
MATERNAL MORBIDITY OR MATERNAL
MORTALITY OR IT'S BIRTH OUTCOMES
OR WHETHER IT'S HOSPITALIZATION,
WHETHER IT'S PREGNANCY
COMPLICATIONS AND OUTCOMES AND
WHAT IT DOESN'T TELL US, REALLY,
IS WHY THESE DISPARITIES EXIST.
YOU KNOW, WHAT IS NOT TELLING
US, WHAT ARE THE EXPERIENCES,
WHAT ARE THE UNMET NEEDS, THE
BARRIERS TO CARE THAT DISABLED
WOMEN FACE DURING THEIR
PREGNANCY.
AND SO, OVER THE COURSE OF THE
LAST FEW YEARS WE'VE INTERVIEWED
WOMEN WITH A PHYSICAL DISABILITY
AND WOMEN WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES AND
WE HAVE INTERVIEWED WOMEN WHO
ARE DEAF AND HARD OF HEARING.
AND CURRENTLY WE'RE WORKING ON A
PROJECT WHERE WE'RE INTERVIEWING
WOMEN WHO ARE BLACK AND LATINO
WITH PHYSICAL DISABILITIES.
BUT OVER ALL OVER THE LAST FEW
YEARS, REALLY WHEN IT COMES TO
THE INTERACTION WITH THE
HEALTH-CARE SYSTEM AND PRE-NATAL
CARE WHAT WE FOUND IS REALLY
THREE LARGE THINGS.
ONE IS THE COMMISSION ATTITUDES.
THE SECOND IS INACCESSIBLE
ENVIRONMENTS, PARTICULARLY
INACCESSIBLE OFFICES AND THE
THIRD ONE WOMEN HAVE TOLD US IS
THE LACK OF EDUCATION.
SO I'M JUST GOING TO DESCRIBE
SOME OF THE TEAMS THAT HAVE COME
UP.
SO WHEN IT CAME TO CLINICIAN
KNOWLEDGE AND ATTITUDES, MANY OF
THE WOMEN WE SPOKE TO SAID YOU
KNOW, SOME OF THE CONDITIONS
WERE VERY SUPPORTIVE AND
RESPECTFUL.
AND THIS IS ONE QUOTE, SHE KNEW
HOW BAD SHE WANTED TO HAVE A
BABY AND WAS SUPPORTED.
I FEEL LIKE SHE TREATS ME LIKE A
REGULAR PATIENCE AND LIKE I
DON'T HAVE A DISABILITY.
BUT LARGELY WHAT IS FOUND IS
WOMEN OFTEN TALKED ABOUT IS THE
CLINICIAN VIEWED THEM AS NON
SEXUAL.
SO THIS WAS A QUOTE FROM A WOMAN
WHO HAD GONE TO PRE-NATAL CARE
APPOINTMENT WITH HER SPOUSE,
WITH HER HUSBAND.
THIS IS WHAT SHE WAS TOLD AND
THIS WAS THE FIRST APPOINTMENT.
I THINK PROBLEM THE WEIRDEST
COMMENT WAS FROM MY DOCTOR.
HE ASKED US HOW WE GOT PREGNANT
AND IF WE USED A TURKEY BASTER.
WHEN IT CAME TO SOME OF THE
OTHER COMMENTS RELATED TO
CLINICIAN KNOWLEDGE AND
ATTITUDES, THE FIRST COMMENT I'M
GOING TO DESCRIBE IS REALLY
ABOUT A WOMAN WHO HAD GONE FOYER
A FOR A PRECONCEPTION
APPOINTMENT AND WE KNOW THAT
WOMEN IN THE GENERAL POPULATION,
WOMEN WITH DISABILITIES, REALLY
RARELY GO FOR PRECONCEPTION
APPOINTMENTS AND SHE HAD TO
TEACH THE CLINICIAN ABOUT SORT
OF HOW TO PROVIDE CARE AND HOW
TO HAVE THAT PARTICULAR
DISABILITY.
SO IT FELT -- IT FELT LIKE THEY
DIDN'T KNOW.
I WAS TEACHING THEM A LOT OF
THINGS WHICH IS NOT TOLD.
THE OTHER ISSUE IS THAT OFTEN
WOMEN TALKED ABOUT WAS THE LACK
OF CARE COORDINATION.
THEY TALKED ABOUT HOW THEY
WANTED THEIR CLINICIANS TO
ACTUALLY TALK TO THEIR OTHER
CLINICIANS TO TALK TO THEIR
PRIMARY CARE PROVIDER OR THEIR
RHUMATOLOGIST AND DISCUSS AND TO
LEARN ABOUT MORE ABOUT THE
PERSON'S DISABILITY AND TO LEARN
MORE ABOUT THE PERSON'S NEEDS.
WE ALL KNOW THAT THE ADA WAS
PASSED IN 1990 AND STILL TODAY,
PEOPLE WITH DISABILITIES ARE
FACING INACCESSIBLE
ENVIRONMENTS.
THE FIRST QUOTE IS REALLY IT NOT
BEING WEIGHED.
A LOT PEOPLE AND TO BE
INITIATIVE IN OUR STUDIES AND
SOME OF THEM HAD NEVER BEEN
WEIGHED THEIR ENTIRE LIVES AND
SO THIS WAS A QUOTE FROM A WOMAN
WITH A PHYSICAL DISABILITY USED
A WHEELCHAIR AND SHE SAID, AND
AFTER YOU REALIZE THAT I ONLY
PUT ON LIKE NOT EVEN SIX POUNDS
TO HALF THE PREGNANCY HE SAID,
I'M NOT WORRIED, I CAN TELL BY
LOOKING AT THAT YOU ARE AT A
HEALTHY WEIGHT, YOU ARE OKAY.
THE SECOND ISSUE RELATED TO JUST
INACCESSIBLE ENVIRONMENTS AND
THIS WAS THE SECOND QUOTE WAS
FROM A WOMAN WHO WAS FROM A
LITTLE PERSON.
AND SHE TALKED ABOUT EVEN THE
SMALLEST -- JUST THE NEED FOR
ACCESS, THE NEED FOR AN
ACCESSIBLE ENVIRONMENT WHETHER
IT WAS PRE-NATAL CARE, DURING
BIRTH, WHETHER IT'S DURING --
YOU KNOW, A POSTPARTUM, THE
COMPLETE LACK OF ACCESSIBLE
ENVIRONMENTS, THE LACK OF EVEN
THE SMALLEST, IN IT CASE IT WAS
A STOOL SHE NEEDED TO ACCESS
WHETHER IT'S OF A SINK, WHETHER
IT'S THE BASS INET IT WAS NEVER
PROVIDED.
IT WAS HARD AND TOWARDS THE END
OF THE PREGNANCY, I WOULD GET A
STOOL, PUT IT NEXT TO THE CHAIR
AND PUT IT NEXT TO THE TABLE AND
STAIR STEP MY WAY UP THERE.
>>THEY FACED WHEN THEY WENT
INTO PRE-NATAL CARE AND THEY
WENT INTO THEIR DELIVERY AND
INTO PREGNANCY, THEY DIDN'T HAVE
MUCH INTERACTION, I CAN'T HAVE
ANYONE TO TURN TO SO THERE WAS
NOT MUCH INFORMATION ABOUT
PREGNANCY AND HAVING A
DISABILITY AND THERE'S NO ONE I
KNEW WHO WAS DISABLED AND KIDS.
IF IT'S HOW TO FIND A
APPROPRIATE PRE-NATAL CARE
CLINICIAN.
THEY FOUND CLINICIANS HAD
NEGATIVE ATTITUDES AND SO OF
COURSE THEY HAD PROBLEMS FINDING
CLINICIANS BUT ALSO, WHAT THEY
FOUND WAS THAT A LOT OF TIMES,
BECAUSE OF NEGATIVE ATTITUDES,
THEY HAD TO KEEP SWITCHING
CLINICIANS.
WOMEN TALKED ABOUT ACTUALLY
CENTERTOGO ACROSS STATE LINES TA
PROVIDERS THEY THOUGHT WAS
APPROPRIATE FOR THEIR PROVIDING
CARE.
A PROVIDER WAS HARDER THAN I
THOUGHT IT WAS GOING TO BE.
THE FIRST COUPLE OF APPOINTMENTS
I HAD, THE OBs WERE NEGATIVE.
THEY DID NOT REALLY UNDERSTAND
THIS PARTICULAR DISABILITY SO
THEY WERE COMING AND SEEING THE
DISABILITY THAT SOME
PRECONCEIVED NOTION.
I WANT TO TALK IN THE NEXT FEW
SLIDES ABOUT THE BARRIERS TO
PROVIDING PERINATAL CARE FROM
THE PERSPECTIVE OF
PRACTITIONERS.
WE INTERVIEWED HEALTHCARE
PRACTITIONERS WHO HAD PROVIDED
CARE TO WOMEN WITH PHYSICAL
DISABILITIES AND ALSO TO WOMEN
WITH INTELLECTUAL DEVELOPMENTS
AND DEAF AND HARD OF HEARING
ABOUT WHAT WE FOUND IS THAT
CLINICIANS REPORTED BARRIERS TO
PROVIDING QUALITY PERINATAL CARE
AND HONESTLY THE BARRIERS WOULD
BE ANALYZING THE BARRIERS FROM E
PERSPECTIVE OF PRACTITIONERS AND
THEY OFTEN MIRRORED EACH A AT M.
WHEN WE PUT THEM IN THESE FOUR
DIFFERENT LEVELS, PRACTITIONER
LEVEL BARRIERS AND THIRD BEING
AND THE FOURTH BEING SCIENTIFIC
EVIDENCE LEVEL BARRIERS.
AND IN THE PRACTICE LEVEL
BARRIERS OFTEN IT CAME DOWN TO
THE LACK OF TRAINING AND LACK OF
EDUCATION AND INADEQUATE CARE
COORDINATION AS WELL AS A LACK
OF PRACTICE ANTICIPATE OF
CONFIDENCE PROVIDING PERINATAL
CARE TO DISSAL PEOPLE.
WHEN IT CAME TO CLINICAL
PRACTICE LEVELS, IT WAS
ACCESSIBILITY AND THIS WAS
AGAIN, AS I SAID, WE WERE
DISGUSTED ASK IT WAS AN ISSUE
WHEN WE INTERVIEWED PEOPLE WITH
DISABILITIES.
PRACTITIONERS TALKED ABOUT THE
LACK OF TRAINING AND EDUCATION
FOR THEIR OFFICE STAFF.
REMEMBER, WHEN PEOPLE ARE GOING
INTO THE OFFICE, THEY MEET THE
OFFICE STAFF.
WHETHER IT'S OVER THE TELEPHONE,
WHEN THEY ENTER THE OFFICE AND
NOT HAVING OR HAVING OFFICE
STAFF HAVING ABLEIST ATTITUDES,
ARE OBVIOUSLY DISTRESSING TO
DISABLED PEOPLE.
THE THIRD IS THE SYSTEM LEVEL
BARRIERS WHEN IT COMES TO TIME
AND SCHEDULING OF CONSTRAINTS,
INSURANCE REIMBURSEMENT POLICIES
AND THE LACK OF TRAINING AND
EDUCATION, AND AS A SYSTEM WIDE
ISSUE.
AND THE FOURTH IS A SCIENTIFIC
LEVEL BARRIERS WHEN CLINICIANS
REPORTED WERE LACK OF
GUIDELINES.
LACK OF CLINICAL INFORMATION AND
LACK OF DATA ON PREGNANCY AND
PARTICULARLY PREGNANCY AMONG
WOMEN WITH RARE CONDITIONS.
SOL, WHEN IT CAME TO PRACTICE
TISH NAL LEVEL BARRIERS IT THIS
A REPORT FROM A CLINICIAN.
PHYSICIANS FEEL UNCOMFORTABLE,
UNTRAINED, UNPREPARED AND THEIR
OFFICES ARE EQUALLY UNTRAINED
AND UNPREPARED.
SO UNFORTUNATELY, THEY, AS
PATIENTS WITH DISABILITIES AND
ENTITLED UP IN A OFFICE AND NOT
BECAUSE THEY HAVE A CLINICAL
PROBLEM SO AGAIN, YOU WILL SEE
THE IMPACT OF A LACK THE
TRAINING, THE IMPACT OF LACK OF
TRAINING ON DISABILITIES IN
THROUGHOUT SOMEONE'S MEDICAL
EDUCATION AND TRAINING AND NOT
WANT TO GO PROVIDE CARE TO
DISABILITY WOMEN DURING THEIR
PREGNANCY.
OF THEY SOMETIMES GET WEIGHED AT
OTHER DOCTOR OFFICES THAT ARE
TAKING CARE OF THEM.
WE RELY ON THEM IF THEY CAN'T
GET OUT OF THEIR WHEELCHAIR.
WHEN WE DISCUSSED THE WOMEN WITH
PHYSICAL DISABILITIES THEY
TALKED ABOUT HOW DOCTORS WERE
EYEBALLING AND WE SEE CLINICIANS
AND THESE ARE CLINICIANS WHO ARE
HAVING EXPERIENCE IN PROVIDING
PERINATAL CARE TALKED ABOUT
RELYING ON A REPORT IN ANOTHER
PORT THAT I DIDN'T HAVE HERE A
WOMAN WITH A PHYSICAL DISABILITY
TALKED ABOUT A CLINICIAN
ACTUALLY WANTING THE HUSBAND TO
PICK HER UP FROM HER WHEELCHAIR.
AND HAVING THE WOMAN BE WEIGHED
IN THIS WAY.
THE SECOND QUOTE HERE IS
CLINICIAN SAYING I GENERALLY
JUST EYEBALL.
WE SPEND AMOUNT OF TIME TALKING
ABOUT IT.
THE PRESSURE TO KEEP APPOINTMENT
TIMES WITHIN THE PRESCRIBED TIME
SLOTS.
10 MINUTES, 15 MINUTES.
WE'RE SO LOCKED INTO THESE 15 TO
30 MINUTE TIME SLOTS IN MEDICAL
PRACTICE IT'S VERY HARD FOR ANY
ONE DOCTOR TO ISOLATE AN HOUR OR
AN HOUR AND A HALF FOR A PATIENT
VISITING.
AND MANY OF THESE PATIENTS WILL
TAKE AN HOUR.
SO, OFTEN CLINICIANS ARE FINDING
THAT YES, YOU KNOW, WE'RE LOCKED
INTO THESE SLOTS AND THE NEED
NOR CLINICAL BASED DATA AND THE
NEED FOR GUIDELINES.
CLINICIANS TALKED ABOUT
EXTRAPOLATING DATA FROM NON
PREGNANT WOMEN WITH DISABILITIES
AND EVEN PREGNANT WOMAN WITH
DISABILITIES ALL OF THE TRAINING
THEY RECEIVED WAS OFTEN JUST BY
DOING A LEARNING OR HAVING A
MENTOR OR A PARTNER THEY TELL ME
EXACTLY WHAT TO DO AND IN THE
DISABILITY CLINIC, THAT'S NOT
THE CASE.
THEY TALK ABOUT THE NEED FOR
CLINICAL DATA AND GUIDELINES AND
THAT WILL ENABLE THEM TO PROVIDE
QUALITY CARE.
SO I WANT TO END WITH A COUPLE
THINGS, ONE I CALL THIS
PRESENTATION A CALL TO ACTION
FOR IN CONCLUSIVE PERINATAL CARE
AND THIS GOES TO THE HEART OF
WHAT THIS CONFERENCE IS ABOUT
AND WHAT THIS WORKSHOP IS ABOUT.
WHEN WE TALK ABOUT
ACCESSIBILITY.
WE'RE TALKING ABOUT TRAINING
WE'RE TALKING ABOUT THE NEED FOR
DATA AND RESEARCH AND WHAT IS
QUALITY OF CARE.
FOR EXAMPLE, IS THE PRE-NATAL
CARE THAT'S PROVIDED TO WOMEN
AND THIS COUNTRY IS THAT
ADEQUATE FOR DISABILITY PEOPLE
AND SOMEONE WITH A DEVELOPMENTAL
DISABILITY FOR EXAMPLE, WE NEED
INTERVENTION AND WE NEED TO HAVE
GUIDELINES ON EFFECTIVE
COMMUNICATION AND WE NEED
COMMUNITY BASED SUPPORTS AND
POLICIES AND PRACTICES THAT
SUPPORT DISABILITY PEOPLE
THROUGHOUT THEIR PREGNANCY.
I WANT TO TELL YOU ABOUT A
NATIONAL RESOURCE CENTER FOR
DISABILITY AND PREGNANCY
RESEARCH AND THIS IS FUNDED
THROUGH NIDLER VISIT OUR WEBSITE
AND ABOUT THE PAPERS WE
PUBLISHED AND PLAIN LANGUAGE AND
TRAINING AND EDUCATION AND SO I
WILL PUT THE LINK TO THE WEBSITE
ON CHAT AND FEEL FREE TO VISIT
IT.
I'D LIKE TO END MY PRESENTATIONS
WITH A QUOTE AND I FIND THIS
QUOTE TO BE REALLY INCAPSULATING
A LOT OF THE INTERVIEWS THAT WE
CONDUCTED AND SHE SAID I LOVED
EVERY PART OF IT AND I FELT
HEALTHY.
I LOVED WHEN I COULD FEEL HER
MOVING, ESPECIALLY THE
EXPERIENCE OF GROWING UP WITH A
DISABILITY.
AND HAVING SO MANY MESSAGES
ABOUT WHAT YOUR BODY CAN DO AND
WE NEED TO FIX THIS AND THIS IS
ISN'T RIGHT.
IT WAS A SENSE OF PRIDE ON HOW
MY BODY DID THIS.
THANK YOU.
I'M GOING TO STOP HERE AND LET
ME KNOW IF YOU WANT TO ANSWER
QUESTIONS NOW OR LATER.
>>Adam: YES, THANK YOU VERY
MUCH.
WE HAVE A COUPLE QUESTIONS WE
HAVE TIME FOR AND I CAN READ
THEM OFF TO YOU IF THAT'S OKAY.
WHAT IS THE SIGNIFICANCE OF
MEASURING LIKELIHOOD TO NAME
BIRTH FATHER OF THE BIRTH
CERTIFICATE.
WOULD YOU PROVIDE CONTEXT WHY
THAT'S AN IMPORTANT METRIC?
>>SURE, THANK YOU FOR THAT
QUESTION.
SO THERE'S BEEN RESEARCH AND
AGAIN THIS IS A VERY APPROACH
BUT THERE'S BEEN RESEARCH THE
INDICATION OF BIRTH FATHER IN A
BIRTH CERTIFICATE HAS HAD A
LONG-TERM CONSEQUENCES FOR BOTH
THE INFANT AND THE MOTHER.
I DON'T HAVE THE RESEARCH RIGHT
NOW BUT WE ALSO FOUND IN OUR
DATA WHICH WAS INTERESTING IS
THAT WOMEN WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES WERE
NOT ONLY BEST LIKELY TO NOTE THE
FATHER IN THE BIRTH CERTIFICATE
BUT YOUNGER WOMEN WITH GREAT
SORE NO SEPARATELY FROM RESEARCH
THAT'S BEEN CONDUCTED BY US AND
SEVERAL OTHERS IS THAT DISABLED
PEOPLE DISABILITY AND GREATER
RISK FOR VIOLENCE AND GREATER
RISK FOR SEXUAL VIOLENCE AND
INTIMATE PARTNER VIOLENCE SEW I
DON'T KNOW HOW THIS IS RELATED
AND IT COULD POTENTIALLY BE
BECAUSE OF THE EXPERIENCE OF
VIOLENCE AND BECAUSE OF A FEAR
OF THAT NOT WANTING TO PROVIDE
THE NAMES OF THE BIRTH FATHER
BUT AGAIN THIS IS THE PROBLEM
WITH SECONDARY DATA IS OFTEN YOU
DID NOT DELVE INTO THE WHY AND
THAT IS A VERY, VERY IMPORTANT
QUESTION THAT HOPEFULLY WE CAN
GET TO AT SOME POINT.
>>THANK YOU.
NEXT QUESTION, THE ATTENDEE WAS
WONDERING IF MIDWIVES ARE
SIMILAR PERSONNEL ARE BETTER
QUALIFIED THAN HAVING DOULA
SUPPORT PEOPLE DURING THEIR
PREGNANCY.
AND THINK HAVE THING BLACK WOMEN
DURING THEIR PREGNANCY AND I'D
LIKE TO SEE THE SAME TO TRYING
TO UNDERSTAND IS THIS SOMETHING
THAT IS VALUED AND IS THIS
SOMETHING THAT POST POT DUMB.
>>WE'LL QUESTIONS IN ONE MORE
IF YOU WANT A QUICK RESPONSE.
WHAT ABOUT A CLINICIAN WHO MAY
HAVE NOT HAD MUCH EXPERIENCE
WITH PEOPLE AT THE DISABILITIES
BEAU WANT TO LEARN FROM THE
PATIENT.
STA A POSITIVE AND OPPORTUNITY?
>>YOU KNOW, AND THIS DID COME
UP IN MY INCOMPETENT VIEWS AND
IF YOU DON'T KNOW, DON'T ASSUME.
IN TERMS OF CARE COR DIPPATION.
TALK TO -- CAN I REACH OUT TO
YOUR PRIMARY CARE, YOUR OTHER
DOCTORS WHO LEARN BUT ALSO, JUST
ASKING AN INDIVIDUAL IS, I
THINK, DEFINITELY THE BEST WAY
TO GO.
ALSO DO THE RESEARCH.
YOU KNOW, THAT'S THE OTHER PIECE
OF IT.
>>Adam: GREAT ADVICE.
THANK YOU VERY MUCH.
WE REALLY APPRECIATE YOU BEING
HERE.
OUR NEXT AND FINAL SPEAKER FOR
THIS DECISION IS Dr. ELIZABETH
HOLIDAY MORGAN AN ASSISTANT
PROFESSOR IN EDUCATIONAL
LEADERSHIP AT CALIFORNIA STATE
UNIVERSITY SACRAMENTO AND
PROGRAM FOR THE CENTER FOR
EXCELLENCE AND DEVELOPMENTAL
DISABILITIES AT THE MIND
INSTITUTE.
HER AREA OF RESEARCH FOCUS
INCLUDES EARLY CHILDHOOD AND
EARLY INTERVENTION SERVICES AND
THIS SPECIFIC INTEREST IN UNDER
REPRESENTED POPULATIONS.
Dr. MORGAN WILL PRESENT ON
DISABILITY AND HEALTH
DISPARITIES IN THE BLACK
AUTISTIC COMMUNITIES AND AGAIN
IF THERE'S TIME FOLLOWING THE
PRESENTATION, SHALL ANSWER
QUESTIONS.
Dr. MORGAN, A PLEASURE HAVING
YOU HERE TODAY.
TAKE IT AWAY.
>>THANK YOU SO MUCH.
LET ME SHARE MY SCREEN.
>>GOOD AFTERNOON, EVERYONE.
OR GOOD MORNING FOR SOME.
MY NAME IS Dr. ELIZABETH
HOLIDAY MORGAN AND I GO BY THE
PRONOUNCE OF SHE/HER/HERS.
I'M CALLING IN FROM SACRAMENTO,
CALIFORNIA, THE TERRITORY OF THE
PLAINS ME WAK NATIONS, I HAVE A
QUICK VISUAL DESCRIPTION.
I AM A LIGHT BROWN/BLACK WOMEN
WITH DARK CURLY HAIR AND
GLASSES.
I SELF-IDENTIFY AS A PERSON WITH
AN INVISIBLE DISABILITY.
TODAY, YOU HAVE HEARD SO MANY
WONDERFUL EXAMPLES AND
PRESENTATIONS JUST TO GIVE US A
SENSE OF THE TOPIC OF ABLEISM IN
THE MEDICAL FIELD AND IN
RESEARCH.
AND NOW, I HAVE THE PLEASURE OF
BEING BEFORE YOU TO TALK ABOUT
WHAT HAPPENS WHEN DISCRIMINATION
AGAINST DISABILITY IS JOINED
WITH ADDITIONAL ASPECTS OF A
PERSON'S IDENTITY SUCH AS RACE,
GENDER, ECONOMIC STATUS,
EDUCATIONAL BACKGROUND JUST TO
NAME A FEW.
AND HOW THOSE EXPERIENCES OF
IDENTITY INTERSECT TO GIVE A
WHOLE DIFFERENT EXPERIENCE AND
HOW WE CAN GIVE ACCOUNT OF HOW
THIS IMPACTS A PERSON'S WITH A
DISABILITY BOTH CHILDREN AND
ADULTS AND PRACTICE.
I WILL DO THIS BY HIGHLIGHTING
MY WORK THAT I HAVE DONE WITH
PARTNERS ACROSS LAST COUPLE OF
YEARS, JUST REALLY FOCUSING ON
THE MARGINALIZED COMMUNITIES AND
WHO SUCH AS BIPOC, DISABLED, AND
PERSONS LIVING AT OR BELOW THE
POVERTY LINE.
SO I HAVE NO DISCLOSURE TO
STATE.
SO, JUST TO GIVE YOU A
BACKGROUND, MOST OF MY
PRESENTATIONS WILL BE REALLY
BASED UPON A NUMBER OF STUDIES.
I ACTUALLY GAVE THEM TO OUR --
TO THE FACILITATORS TO HELP PUT
THEM IN THE CHAT SO THAT YOU CAN
HAVE THEM AS A REFERENCE.
BUT THE PAPERS THAT I WILL
QUICKLY HIGHLIGHT RIGHT NOW ARE
JUST REALLY GIVING YOU A
REFERENCE OF WHAT THE FOUNDATION
OF THIS TALK WILL BE BASED UPON
AND THE FIRST IS A COMMENTARY
POSTED IN THE PEDIATRICS JOURNAL
THAT MY SUPPLEMENT AND TWO OF MY
COLLEAGUES AND PUT TOGETHER
REALLY JUST A REALLY HEIGHT
LIGHT THE INTERSECTIONS OF RACE
AND DISABILITY IN PRACTICE AND
WITH COLLEAGUE OF MINE AT THE
MIND INSTITUTE AND HIGHLIGHTING
OUR PARTNERSHIP THAT WE HAVE
WITH BLACK MOTHER ADVOCATES IN
NORTHERN CALIFORNIA AND
WISCONSIN AND IN OUR LENS TO
REALLY TALK ABOUT THE
PARTNERSHIP THAT IS NECESSARY TO
CREATE PROGRAMMING THAT IS
ANTIRACIST AND ANTI A-LIST AND
THIS LAST STUDY HERE THE
FOUNDATIONAL STUDY WAS DONE WITH
A GROUP OF RESEARCHERS ON THE
PROJECT ACROSS THREE STATES AND
WHICH WAS REALLY HIGHLIGHTING
FOCUS GROUP DATA THAT WE PULLED
UPON TO ADDRESS SERVICES AND
BARRIERS AND ACCESS TO SUPPORT
AND SERVICES FOR AUTISTIC
CHILDREN AND SO THESE PARTICULAR
FOCUS GROUPS WERE FROM BIPOC AND
LOW INCOME FAMILIES AND SO THESE
ARE A LITTLE BACKGROUND WITH
RACE AND AUTISM.
SPECIFICALLY BLACKNESS AND
AUTISM.
THE BACKGROUND WE KNOW JUST IN
MENTAL, 1/36 CHILDREN ARE
DIAGNOSED TO BE ON THE AUTISM
SPECTRUM IN THE U.S. AND EARLY
INTERVENTION, WE HAVE LOTS OF
CREDITABLE INFORMATION THAT
EARLY INTERVENTION REALLY MAKES
A BIG DIFFERENCE AND PROVIDING
SIGNIFICANT OVER ALL QUALITY OF
LIFE OUTCOMES FOR CHILDREN WITH
ASD.
BUT, WE KNOW SOME ADDITIONAL
RESEARCH WITH BLACK CHILDREN AND
WHEN I SAY BLACK, THIS INCLUDES
CHILDREN, AFRICAN AMERICAN
CHILDREN, IMMIGRANT AFRICANS AND
WEST CARIBBEAN AND COMMUNITIES,
THESE CHILDREN ARE DIAGNOSED 1.6
YEARS LATER AND UP TO THREE
TIMES MORE LIKELY TO BE
INITIALLY MISDIAGNOSED THAN
THEIR WHITE COUNTERPARTS AND SO,
EVEN MORE ALARMING BECAUSE I DO
A LOT OF RESEARCH SPECIFICALLY
ON FAMILIES, WE KNOW THAT
REGARDLESS OF SOCIOECONOMIC
STATUS, OR EDUCATIONAL
ATTAINMENT, THAT BLACK FAMILIES
STILL HAVE LIMITED ACCESS TO
INFORMATION AND APPROPRIATE
INTERVENTION TO SERVICES FOR
THEIR CHILDREN WHEN THEY FINALLY
ARE ABLE TO GET A DIAGNOSIS.
SO, JUST TO REALLY STRESS THE
IMPORTANCE OF ADVOCACY AND
AUTISM PARENTS, PARENTS ARE
CHILDREN ON THE AUTISM SPECTRUM,
YOU KNOW, I WANT TO SET THE
TIMELINE.
SO JUST GIVEN A HISTORICAL
CONTEXT, WE KNOW THAT IN 1943,
Dr. CANNER, WE SEE THE FIRST
EXAMPLE OF THE AUTISM IN THE
U.S. WITH HIS PAPER JUST
DOCUMENT OF A 11 MINORS AS HE
DESCRIBED HAVING BEHAVIOR
ASSOCIATED WITH LIMITED ABILITY
TO GENERALIZE OR ENGAGE IN
SPONTANEOUS ACTIVITY OR ENGAGE
IN REPETITIVE BEHAVIOR WHICH WE
ALL KNOW ARE A HALLMARK SIGN OF
AN AUTISM DIAGNOSIS TODAY SO
EVEN BACK THEN, WE REALLY SAW
THE POWERFUL ROLE THAT PARENTS
PLAYED IN ADVOCATING FOR THEIR
CHILDREN IN THE 11 MINORS THAT
WERE OBSERVED IN Dr. CANNER'S
STUDY, WERE REALLY USED THEIR
INFLUENCE TO GET AN ADDITIONAL
EVALUATION BY Dr. CANNER FOR
THIS AUTISM DIAGNOSIS.
SO FURTHER ALONG THE LINE, IN
THE TIMELINE, WE LEARNED MORE
ABOUT THE ROLE OF PARENTS AND
THIS JOURNEY OF ADVOCACY FOR
CHILDREN ON THE SPECTRUM SO IN
THE '60s, PARENTS WERE
VILLAINIZED AND CALLED
REFRIGERATOR PARENTS OR MOTHERS,
MOTHERS WHO WERE BLAMED AS THE
CAUSE OF THEIR CHILDREN'S
DISORDER AND LACK OF NURTURING
AND CO-PARENTING, BEING THE
ROOT.
OF COURSE, WE DO KNOW THIS WAS
DEBUNKED.
THE RECOMMENDED TREATMENT BACK
THEN WAS TO REMOVE CHILDREN FROM
THEIR PARENTS' CARE AND
INSTITUTIONALIZE THE CHILDREN.
EVEN IN ALL OF THAT, THE PARENTS
FACED JUST GREAT OPPOSITION
FORGED A PATHWAY WHEN HE WE TALK
ABOUT AUTISM INTERVENTION, WE
KNOW THAT OUR CURRENT
EVIDENCE-BASED PRACTICE REALLY
ARE THOSE INTERVENTIONS THAT
HAVE A STRONG PARENT COMPONENT
INVOLVED IN INTERVENTION AND SO
PARENTS REALLY PLAY A REALLY
STRONG ROLE.
SO WITH THAT, I WANT YOU TO
ENGAGE IN EXERCISE WITH ME.
SO MY BACKGROUND IS I'M A
TEACHER.
SO FIRST THING THAT I'M ALWAYS
CARE THE MOST ABOUT IS MAKING
SURE TO TAKE US IN ON A JOURNEY,
A LEARNING JOURNEY TOGETHER AND
SO I'D LIKE FOR YOU TO THINK
ABOUT THE PARENTS, THE POWERFUL
AUTISM PARENTS, RIGHT, THE
ADVOCATES THAT WE TALKED ABOUT
IN THIS TIMELINE AND I WANT YOU
TO REALLY TRY TO PUT A PICTURE
IN YOUR HEAD OF WHO YOU THINK
THEY WERE.
TRY TO VISUALIZE THEM.
AND OF COURSE YOU ARE NOT GOING
TO VERBALIZE IT OR I WON'T ASK
YOU TO TYPE IT IN THE CHAT, BUT
I WANT YOU TO THINK TO YOURSELF,
DID YOU SEE THIS WOMAN WHEN YOU
THOUGHT OF THIS POWERFUL PARENT
ADVOCATE FOR CHILDREN ON THE
SPECTRUM.
I WOULD SAY MOST OF YOU DID NOT.
SOME OF YOU MIGHT HAVE BUT MOST
YOU DID NOT I WOULD SAY BECAUSE,
THE EXPERIENCES OF BLACK WOMEN
WERE REALLY SUPPRESSED AND
ERASED FROM THE LITERATURE AND
FROM THIS HISTORICAL TIMELINE
AND AS A BLACK MOTHER MYSELF,
AND A PARENT OF A CHILD ON THE
AUTISM SPECTRUM, I CAN TELL YOU
THAT THESE STORIES ARE
ABSOLUTELY REAL BUT IT'S THE
SYSTEMIC RACISM, SEXISM
OPPRESSIVE SYSTEMS THAT REALLY
SUPPRESSED THE STORIES, FROM
BLACK AND BROWN COMMUNITIES FROM
BEING TOLD, AND SO, REALLY, THIS
PRESENTS THE REASON WHY WE HAVE
A CLEAR GAP IN THIS STORY LINE
OR REALLY A CLEAR GAP IN BEING
ABLE TO HEAR CERTAIN STORIES IN
THE LITERATURE.
SO, LET ME TELL YOU WHO THIS
WOMAN WAS.
SO, HER NAME IS DORTHY GROOMER
AND SHE WAS, I CAME ACROSS HER
IN MY RESEARCH OF TRYING TO FIND
EVIDENCE OF BLACK PARENTS
ADVOCATING FOR THEIR CHILDREN.
>>I ASKED DOES STEVEN HAVE
AUTISM AND THEY SAID NO, NO.
IT MAY BE AN EMOTIONAL
DISTURBANCE BUT IT'S NOT AUTISM.
WE DID NOT FIT THE MOLD FOR
AUTISM, WHICH IS WHITE, UPPER
MIDDLE-CLASS, AND VERY, VERY
BRIGHT.
IT WAS REALLY NOT A NEGOTIABLE
ISSUE.
ACCORDING TO MY DOCTOR, MY SON
COULD NOT BE AUTISTIC.
I WAS NOT WHITE, AND I WAS
ASSUMED THAT I WAS NOT EDUCATED,
THEREFORE, HE WAS LABELED
EMOTIONALLY DISTURBED.
HERE YOUR CHILD AS A DISABILITY
THAT YOU RECOGNIZE, AND THEY SAY
NO.
YOU CAN'T DO THAT.
YOU CAN'T EVEN BE REFRIGERATOR
MOTHER, THE IRONY OF IT ALL.
SO, DORTHY'S STORY IS NOT --
IT'S NOT SOMETHING THAT IS NOT
AN ANOMALIES, RIGHT.
SHE IS SIMILAR TO MANY
EXPERIENCES OF BLACK MOTHERS AND
OF CHILDREN ON THE AUTISM
SPECTRUM AND I HAVE BEEN IN MY
WORK, WITH INTERVIEWING THESE
MOTHERS, THIS IS A PAPER THAT
CAME OUT OF THAT FOCUSING
SPECIFICALLY ON THEIR JOURNEY OF
NAVIGATING SCHOOLING SYSTEMS AND
THE TYPE OF CULTURAL CAPITOL
THAT THEY USED TO BE ABLE TO
NAVIGATE AND ADVOCATE FOR THEIR
CHILDREN.
SO, THIS WAS A QUALITATIVE
NARRATIVE INQUIRY AND
METHODOLOGY WAS USED USING
OPEN-ENDED SEMI STRUCTURAL
INTERVIEWS AND GROUNDED THEORY
AND IT WAS USED IN ORDER TO
REALLY ANALYZE THE DATA AND
THERE WERE MULTIPLE HOLDERS AND
THE FIRST ROUND OF CODING WE
REALLY LOOKED AT AN EXTRACT A
USING OF A CULTURAL CAPITAL
FRAMEWORK IN COMMUNITY CULTURE
FRAMEWORK REALLY BY Dr. TERRY
OSOS WHO HELPED FRAME WHAT ARE
THE ASSETS THAT THESE MOTHERS
ARE BRINGING INTO THE ROOM AND
HOW THEY WERE USING TO ADVOCATE.
SO, WE CONDUCTED -- WE CODED THE
DATA AND CAME UP WITH ALSO
THEMES AND HAD OVER 131 PAGES OF
YOUR TRANSCRIPT WITH A 90%
RELIABILITY.
THESE ARE SOME DEMOGRAPHICS SO
YOU CAN SEE THE MOTHERS THAT WE
ENDED UP WORKING WITH, BY OUR
FIFTH TRANSCRIPT OF OUR 90
MINUTE INTERVIEW WE SEE
SATURATION WHICH IS REALLY JUST
SAYING WE WERE HEARING THIS SAME
THING OVER AND OVER AGAIN AND
THESE ARE OUR DEMOGRAPHIC AND
MOST OF THE AVERAGE AGE OF THE
WOMAN WAS 46 YEARS OR
47-YEARS-OLD AND AVERAGE AGE OF
A CHILD, THE CHILD AT THAT TIME
WAS 10-YEARS-OLD AND ALL THE
WOMEN HAD SOME FORM OF COLLEGE
EDUCATION AND IT'S REALLY
SIMILAR WITH THE NATIONAL CENTER
OF EDUCATIONAL STATISTICS
SUPPORTING THE BLACK WOMEN WHO
ARE ONE OF THE THINGEL MOST
HIGHLY EDUCATED POPULATIONS IN
THE U.S.
AND THE AVERAGE YEAR INCOME, WAS
$53,000 A YEAR AND ALL OF THESE
CHILDREN AND I THINK THIS IS
IMPORTANT, ALL OF THESE CHILDREN
WERE IN A SELF-CONTAINED
CLASSROOM WITH MEANING THEY WERE
IN DISABILITY-SPECIFIC
CLASSROOMS.
NOT GIVEN AN EDUCATION TO BE IN
A CLASSROOM ONLY ONE HAD A
GENERAL EDUCATION OPTION AFTER
YEARS OF ADVOCACY AND THIS
DOESN'T MATCH UP WITH WITH IEDA
LEGISLATION PROMOTES WITH
CHILDREN FOR DISABILITIES TO BE
IN LEAST RESTRICTIVE
ENVIRONMENTS WITH A DEVELOPING
PIEDEVELOPPEERS TO THE MAXIMUM T
POSSIBLE.
YOU KNOW THIS IS HOW WE WERE
ABLE TO ANALYZE THE DATA.
WE WERE LOOKING AT THE ASSETS
BECAUSE WE HAVE A DEF SET BASED
FRAMEWORK WITH BLACK FAMILIES
AND ALSO PEOPLE WITH
DISABILITIES SO WE WERE
INTERESTED IN LOOKING AT ASSET
BASED WORK AND SO WE PULLED UPON
WORK THAT HIGHLIGHTS CULTURAL
AND CAPITAL AND CULTURAL CAPITAL
IN PARTICULAR COMES FROM
SOCIOLOGY AND IT'S A OLD
CONCEPT.
FRENCH SOCIOLOGIST' PAIR PUT
TOGETHER JUST THINKING ABOUT THE
SOCIAL REPRODUCTION OF STATUS
AND POWER IN SOCIETY AND SO
INSTITUTIONS SUCH AS SCHOOLS AND
MEDICAL INSTITUTIONS REALLY
CAN'T HELP BUT PERPETUATE
CAPITOL FOR CERTAIN POPULATIONS
AND SPECIFICALLY SCHOOLS CAN
REALLY REPRODUCE INEQUALITY WHEN
IS CONTINUE TO GO REWARD PEOPLE
WITH A PARTICULAR WITH VALUES
AND FORMS W THAT SO THE TYPES OF
CAPITOL THAT THE COMMUNITIES OF
COLOR POSSESS THAT ARE
TRANSLATABLE INTO RESOURCES, AS
SET SKILLS, AND NAVIGATION
SKILLS, RIGHT.
SO THESE WE'RE LOOKING AT WHOSE
IDEAS REALLY ARE ACKNOWLEDGED
FOR IDEAS OR KNOWLEDGE FOR IN
SIGHT AND MANY RESEARCHERS,
PATRICIA COLLINS, THESE PEOPLE
HAVE REALLY ENGAGE THIS WORK
BEFORE AND HAVE COME UP WITH THE
IDEA THAT IF WE REALLY WANT TO
DO THIS WORK, WE HAVE TO USE
FRAMEWORKS THAT ALLOW US TO BE
ABLE TO DIG DEEPER IN LOOK FOR
THE GOOD AND SO, LOOKING, USING
THIS COMMUNITY CULTURAL WEALTH
FRAMEWORK AND ALLOWED US TO BE
ABLE TO NOT LOOK AT LACK OF
CULTURAL RESOURCES THAT THESE
MOTHERS HAVE AND LOOKING AT WHAT
THE ASSETS THAT THEY POSSESSION
AND HOW THEY USED THAT ASSETS
FOR THEIR CHILDREN.
I ALSO PULLED UPON AND PULLED IN
TWO OTHER RESEARCHERS TO ROUND
OUT THIS PARTICULAR STUDY
BECAUSE WE WERE FOCUSING ON
BLACK MOTHERS AND I LOOKED AND I
PULLED UPON THE WORK OF HER WORK
AND FOR MOTHER AND WHICH WAS
SOMETHING AND CAME OUT OF INTO
THEY SHOULD LIKE 25 LOW INCOME
IMMIGRANT MOTHERS AS THEY USE
AREAS AND TO NAVIGATE MEDICAL
AND EDUCATIONAL SETTINGS TO
ADVOCATE FOR CHILDREN AND THEN
Dr. PRUDENCE CARTER, HER WORK
ON BLACK CULTURAL CAPITAL AND
IT'S TALKING ABOUT THE ABILITY
TO NAVIGATE OR INTEGRATE BETWEEN
TWO SETS OF SOCIAL AND CULTURAL
VALUES SYSTEMS AND THE MORE THAT
YOU ARE ABLE TO APPROPRIATELY DO
THAT, HOW BLACK PEOPLE IN
PARTICULAR ARE ABLE TO
DEMONSTRATE THAT CAPITOL AND
ANOTHER PEOPLE, MANY TIMES I
THINK BLACK CULTURAL CAPITOL IS
THE ABILITY TO CODE SWITCH,
RIGHT.
TO GO IN BETWEEN TWO DIFFERENT
FUNDS OF KNOWLEDGE VERY FLUIDLY.
SO, AS YOU KNOW, THIS IS A
QUALITATIVE STUDIES THESE ONLY
REPRESENT THE TIMES THAT THE
CODERS AND THE BUT THERE MANY
AND AND IN THE INCOMPETENT VIEWS
AND SPECIFICALLY AND COME IN UM
SIMILAR AND FROM THE TRANSCRIPTS
SO THIS ONE COMES FROM
PARTICIPANT.
A 55-YEAR-OLD MOTHER OF THREE.
SHE'S A SOUTHERN WOMAN.
SHE TALKS ABOUT HER STRUGGLES
SHE HAD TO GET HER SON DIAGNOSED
WITH AUTISM.
AFTER HE WAS DIAGNOSED SO SHE
SAYS, AND HE WAS FIVE GOING ON
SIX DAY BEING HIS PEDIATRICIAN
AND SAID NO, THEY WERE GOING TO
STAY WITH THE ORIGINAL DIAGNOSIS
AND ANYWAY, WE WERE FUSSING AT
THE DOCTOR AND KINDS OF GETTING
SMART WITH HER AND TELLING HER
BASICALLY, YOU CAN GO WITH
ANYTHING THAT YOU WANT TO GO
WITH, BUT I AM GOING TO GET HIM
TESTED.
YOU JUST CAN MAKE THIS EASY ON
ME.
OTHERWISE I'M COMING THROUGH THE
BACK DOOR.
BUT I'M GOING TO HAVE THIS TEST
DONE BECAUSE I KNOW SOMETHING IS
WRONG.
IF YOU WERE SO SURE THE ORIGINAL
DIAGNOSIS IS CORRECT, LET ME
HAVE THE TEST TO PROVE THAT YOUR
RIGHT AND I'M WRONG.
SHE DECIDED SHE WOULD GIVE YOU
THE AUTHORIZATION TO HAVE HIM
TESTED AND OF COURSE HE WAS
DIAGNOSED WITH AUTISM.
ANOTHER EXAMPLE COMES FROM
EVELYN A 52-YEAR-OLD MOTHER OF
TWO AND IT GAVE HER AN EXAMPLE
OF THE CONSTANT NEED TO ASSERT
HERSELF WHEN IT CAME TO HER
SONS.
AND WHAPMAGOOSTUI IS BEST FOR
YOUR CHILD.
>>INSTANCES OF NAVIGATIONAL
CAPITOL, I REALLY TRY TO PULL
UPON SOME OF THE DATA IN
PARTICULAR THAT WAS FOCUSING IN
ON MEDICAL DOCTORS AND SO
NAVIGATION IS THIS IDEA TO THE
MOTHERS WHEN WERE ABLE TO HAVE
BE SAVVY AND NAVIGATING THROUGH
SYSTEMS AND SYSTEMS SPECIFICALLY
BILL WITHIN NOT IN MIND AND SO
THIS IS AN EXAMPLE OF MAY USING
NAVIGATIONAL AND I'M TIRED, I
WENT TO SO MANY DOCTORS AND THEY
TELL ME THESE ARE FREAK SENDS,
BOYS WILL BE BOYS.
I CAN'T TAKE IT ANYMORE.
I SAID, DEEP IN MY HEART I KNOW
THERE'S SOMETHING WRONG WITH MY
CHILD BUT I CANNOT GET 20 WHAT
TESTING SO I CAN KNOWS WHAT IS
GOING ON I SAID I JUST WANT TO
LOOK AT, I WANT YOU TO LOOK AT
HIS FILES AND IF YOU CAN
HONESTLY LOOK AT HIS FILES AND
COME BACK AND SAY, ONCE AGAIN,
IN MY LIFE, BOYS WILL BE BOYS,
IT'S JUST A FREQUENT ACCIDENT,
THEN I'LL TAKE IT AND THIS IS
ADVOCATING FOR HER SON WHO
ACTUALLY WAS EARLY ONSET
OSTEOPOROSIS.
IF IT WASN'T, HER SON WOULD HAVE
NEVER GOTTEN THE SUPPORT THEY
NEEDED.
IN THIS LAST INSTANCE, IT'S
COMING FROM JOSEPHINE A
24-YEAR-OLD MOTHER OF SETS OF
TWO TWINS AND SHE WENT TO
MULTIPLE DOCTORS BEFORE ANY OF
HER CONCERNS AND THE FIRST PART
TALKS ABOUT SHE SAID, I FOUND
ANOTHER DOCTOR AND I DIDN'T KNOW
WHERE I WAS GOING AND I JUST
KNOW THAT I NEEDED SOMEONE TO
TAKE ME AND MY DAUGHTERS
SERIOUSLY.
THE DOCTOR I HAD BEFORE REALLY
WAS MAKING ME FEEL LIKE I WAS
CRAZY AND I STARTED TO FEEL
LIKE, I STARTED INFORM FEEL I
KEPT MAKING APPOINTMENTS AFTER
APPOINTMENTS CHECKING IN WITH
HER HEARING, CAN YOU DO THIS AND
HE WAS JUST LIKE WHY DON'T YOU
JUST WAIT?
UNTIL SHE TURNS 2 TO SEE IF
SHE'S GOING TO TALK?
LET HER TURN 2 AND SO THIS IS
ACTUALLY A COMMON THEME CAN AND
THIS IDEA OF WAIT AND SEE AND
HOW EVEN IN DESPITE THE FACT
THAT MOTHERS ARE ADAMANT AND
THEY REALLY KNOW THAT THERE'S
SOMETHING THAT THEY NEED TO HAVE
MORE FURTHER ASSESSMENTS FOR
THEIR CHILDREN, THEY'RE BEING
IGNORED.
SO THESE STORIES IN THE PREVIOUS
PUBLICATION ARE EVIDENCE OF
PEOPLE EXPERIENCING RACISM AND
ABLEISM AND NAVIGATING A SCHOOL
MEDICAL SYSTEMS FOR THEIR
CHILDREN.
WE KNOW THIS DOES NOT STOP WHEN
THE AUTISTIC CHILD IS AN ADULT.
SO, JUST LIKE Dr. HALL POINTED
OUT IN OUR FIRST SESSION, THAT
WE HAVE RESEARCH THAT REALLY
VERIFIES TO ACCESS IN HEALTHCARE
DISPARITIES.
HOWEVER, WE HAVE FEW STUDIES
THAT HAVE LOOKED AT HOW THE
COMBINATION OF THE PERSON'S
DISABILITY SPECIFICALLY AUTISM,
AND RACIAL ETHNIC IDENTITIES
THAT THOSE AFFECT THEIR HEALTH
AS THEY'RE ADULTS.
AND IN THIS STUDY DONE WITH
JENNIFER AND HER COLLEAGUES AND
AS WELL AS BLACK AUTISTIC
ADVOCATE MORNA KEY, FOUND THIS
DUEL EXPERIENCE OF ABLEISM AND
STRUCTURAL RACISM, MAY HAVE A
LARGER NEGATIVE EFFECT ON HEALTH
AND AUTISTIC PEOPLE OF COLOR
THAN EITHER ONE EXPERIENCE
ALONE.
THIS POINTS TO THE IMPORTANCE OF
IDENTIFYING HEALTH DISPARITIES
AND SO WRE WE CAN ADDRESS THEM.
IN THE STUDY, WE STUDIED A
DIVERSE GROUP OF ABOUT 1500
AUTISTIC ADULTS AND ABOUT 15,000
NON AUTISTIC ADULTS WHO ALL
RECEIVED HEALTH CARE FROM THE
SAME LARGE HEALTH PLAN IN
CALIFORNIA.
WE EXAMINED THE ELECTRONIC
HEALTH RECORDS TO EXAMINE
WHETHER DIAGNOSIS OF HEALTH
CONDITIONS DIFFER BY AUTISM
STATUS AND RACE AND ETHNICITY.
WE LOOKED WHETHER THEY WERE
DIAGNOSED WITH THESE CONDITIONS
COMPARED TO OTHER GROUPS.
SO, WHAT WERE THE RESULT THIS IS
SO HERE ARE SOME EXAMPLES, SOME
HIGHLIGHTING A FEW.
WITH EVERY RACIAL ETHNIC GROUP,
AUTISTIC ADULTS WERE MORE LIKELY
THAN NON AUTISTIC ADULTS TO BE
DIAGNOSED WITH MOST MEDICAL
PSYCHIATRIC CONDITIONS.
AMONG THE AUTISTIC GROUPS, BLACK
HISPANIC ASIAN ADULTS WERE LESS
LIKELY TO BE DIAGNOSED WITH
PSYCHIATRIC CONDITIONS COMPARED
TO WHITE ADULTS.
WE SAW SIMILAR DIFFERENCES IN
PSYCHIATRIC DIAGNOSIS BY RACE
AND ETHNICITY.
AMONG NON AUTISTIC ADULTS.
BUT FURTHER, THE DIAGNOSTIC
PATTERNS AMONG ADULTS WHO WERE
AUTISTIC AND BLACK SUGGESTED
THAT THIS GROUP MAY EXPERIENCE
UNIQUE DIFFICULTIES RECEIVING
MENTAL HEALTH AND AUTOIMMUNE
DIAGNOSIS.
THEY MAY BE AT A HIGHER RISK FOR
HYPERTENSION.
SO WHAT DID THESE FINDINGS ADD
TO WHAT WE ALREADY KNOW?
WELL, PREVIOUS STUDIES HAVE
FOUND THAT RACIAL AND ETHNIC
DISPARITIES OF BOTH MENTAL
HEALTH AND ACCESS TO HEALTHCARE
AMONG AUTISTIC CHILDREN.
ESPECIALLY MENTAL HEALTH CARE
MAY EXIST FOR AUTISTIC ADULTS.
SO, GENERALLY, THERE'S NO LARGE
DIFFERENCES IN RACE ETHNICITY
AND AUTISM STATUS FOR ASTHMA.
WITH THE EXCEPTION OF OTHER RACE
CATEGORIES WHICH WAS SOMETHING
THAT CAME UP.
BUT THE AUTISTIC ADULTS THAT HAD
LOWER THAN EXPECTED PREVALENCE
OF AUTOIMMUNE DISORDERS, IN
COMPARISON TO NON AUTISTIC BLACK
PEER AND OTHER RACE AND ETH NICE
TEASE SO THIS SUGGESTS THAT WE
MAY FACE BARRIERS IN GETTING AN
AUTOIMMUNE DIAGNOSIS.
HYPER PENSION WAS DIAGNOSED MORE
OFTEN THAN WE EXPECTED AMONG DOW
ADVERTISE TICK BLACK ADULT AND
THIS IS A CLOSER LOOK, CLOSER
ATTENTION TO THIS IS HEALTH
DISPARITIES IN THE NON AUTISTIC
POPULATION ALSO AFFECT THE
AUTISTIC POPULATION.
SO, IMPLICATIONS FOR ALL OF THIS
WORK.
REALLY, CALL FOR WHAT Dr.
MITRA SAID WHICH IS A CALL FOR
ACTION, RIGHT.
WE NEED TO WORK TO' MEAL RATE
OUR CURRENT SYSTEMS TO ENGAGE
FAMILIES AND SPECIFICALLY
FAMILIES OF COLOR AND ADDRESS
THE DISPARITIES THAT WE HAVE.
AND REALLY SEE THEM, NOT AS RED
FLAGS FOR DEEPER ISSUES AND THAT
ARE PART OF OUR PRACTICE AND OUR
POLICY AND ADDRESS THOSE THINGS.
THAT ALSO INVOLVES DEVELOPING
INTERVENTIONS THAT YOU ARE
FAMILY INTERESTED WHICH INCLUDES
CULTURE AND RACE AND LANGUAGE,
AND THANK YOU AND I'LL TAKE
QUESTIONS IF WE HAVE TIME.
>>Adam: THANK YOU.
IT LOOKS LIKE WE ONLY HAVE A
COUPLE COMMENTS IN THE CHAT.
WE DO, WE'RE ALSO AT TIME.
I WANT TODAY ASK A GENERAL
QUESTION.
GIVEN THAT YOU HAVE NIH AND
MEMBERS OF THE BIOMEDICAL AND
BEHAVIORAL RESEARCH COMMUNITY
HERE AND YOU HAVE A PLATFORM
WHAT'S RECOMMENDATIONS WOULD YOU
MAKE?
WHAT DO YOU WANT TO SEE US DO
MOVE FORWARD?
>>YOU KNOW, THANK YOU FOR THAT.
I THINK WHAT WE'RE DEFINITELY
GOING IN THE POSITIVE DIRECTION
AND THAT WE'RE STARTING TO MAKE
SURE THAT WE HAVE FUNDING
OPTIONS AND PRIORITIES ON
INCLUDING INTERSECTIONALITY
ASPECTS OF OUR IDENTITIES AND
RESEARCH PROJECTS AND
PRIORITIZING THOSE THINGS.
I THINK MAKING SURE WE'RE HAVING
COMMUNITY BASED PROJECTS IS A
KEY PART OF THIS JUST BECAUSE WE
KNOW OF THE HISTORICAL
COMPLEXITIES THAT KEEP CERTAIN
COMMUNITIES FROM THE TABLE SO WE
HAVE TO PRIORITIZE THAT WE'RE
HEARING THE COMMUNITY VOICE AND
INCLUDING THE COMMUNITY AND NOT
BEING A PART OF THE SOLUTIONS OF
THE PROBLEMS THAT WE HAVE.
THANK YOU.
>>Adam: THANK YOU SO MUCH.
AND WITH THAT WE'RE AT TIME FOR
THE SESSION.
I WANT TO GIVE A ENTHUSIASTIC
THANK YOU TO DOCTORS FOR THEIR
PRESENTATIONS TODAY AND THEIR ON
GOING WORK IN THE AREA OF
DISABILITIES AND HEALTH
DISPARITIES.
THANK YOU ALL SO MUCH.
NEXT IS A SHORT BREAK.
PLEASE STAY CONNECTED TO THE
ZOOM AND MAKE SURE TO RETURN AT
3:20 FOR OUR PANEL DISCUSSION ON
BARRIERS TO CLINICAL CARE AND
RESEARCH.
THANK YOU, EVERYONE.
>> IT'S NOW 3:20 AND MY
NAME IS JOE BONNER I'M A OFFICER
WITH THE NATIONAL CENTER FOR
MEDICAL REHABILITATION RESEARCH.
I AM EXCITED TO WORK WITH THIS
PANEL TODAY AND I AM A CAUCASIAN
MAN WITH BROWN HAIR AND BROWN
GLASSES.
I'M ALSO WE ARE A PURPLE SHIRT
WEARING A PURPLE SHIRTWITH A BL.
I WOULD LIKE TO INTRODUCE
JENNIFER SENDAPART OF THE
DISABLED PARENTING PROJECT.
BARRIE MUNRO IS A CHIEF
DEVELOPMENT OFFICER OF THE
CANADIAN SPINAL RESEARCH
ORGANIZATIONS.
AFTER WORKING AS A PERSONAL
INJURY ATTORNEY, HE DECIDED TO
DEDICATE HIS TIME FULLY TO HELP
FIND A CURE TO PARALYSIS.
MAX BAROWS HE MENTORS YOUTH AND
ADULTS WITH DISABILITY TO SPEAK
UP WITH THEMSELVES AND BE
LEADERS.
MAX CONNECTS WITH PEOPLE ON ALL
LEVELS AND ADVOCATING FOR TRUE
INCLUSION OF PEOPLE WITH
DEVELOPMENTAL DISABILITIES.
THIS IS QUESTION AND ANSWER.
I INVITE EVERYONE TO PLEASE
START PUTTING THEIR QUESTIONS
INTO THE Q&A BOX.
AND WHILE WE'RE WAITING, I'LL
GIVE EVERYONE A FEW MOMENTS TO
INTRODUCE THEMSELVES AND TALK
ABOUT WHAT THEY WOULD LIKE TO
GET OUT OF THIS Q&A SESSION.
SO, JENNIFER, CAN WE START WITH
YOU.
>>HI.
MY NAME IS JENNIFER SENDA, I'M
MAKING SURE YOU CAN HEAR ME.
>>Joe: YES.
>>I AM A MOTHER WITH CEREBRAL
PALSY.
I AM ALSO FIRST-GENERATION
MEXICAN-AMERICAN.
SO, THERE WAS A LANGUAGE BARRIER
WHEN I WAS BORN SO THAT ALSO
CONTRIBUTED TO SOME OF THE
ABLEISM MAYBE, I FELT WHEN I WAS
YOUNGER.
I HAVE A 13-YEAR-OLD SON WHO HAS
ADHD AND ICON CONTRIBUTING TO
THE DISABLED PARTICIPATING
PROJECTS AS WELL AS SOME OTHER
PROJECTS.
>>Joe: THANK YOU.
NEXT CAN I ASK BARRIE.
>>HI, BARRIE MUNRO HERE.
I'M A WHITE MALE WEARING
GLASSES.
I USED TO HAVE DARK HAIR NOW
IT'S GRAY AND A BLUE QUARTER-ZIP
HOODIE.
I AM A QUAD DRAMA EVENING I CAN
QUADRIPLEGIC.FROM A SPINAL CORD.
AND TO A CURE AND SO MY OF
EXPERIENCE AND EXPOSURE TO
ABLEISM IN THE RESEARCH SETTING
HAS BEEN QUITE A JOURNEY SO TO
SPEAK AND WE THINK THAT WE
HOPEFULLY FOUND SOME WAYS TO
WORK WITH THAT AND GET THROUGH
TO BREAK THAT BARRIER DOWN.
>>Joe: AND MAX -- CAN YOU
PLEASE INTRODUCE YOURSELF.
>>YES, I'M MAX BARROWS.
OUTREACH DIRECTOR GREEN MOUNTAIN
SELF-ADVOCATES THE DISABILITY
RIGHTS ORGANIZATION I WORK FOR
IN THE STATE OF VERMONT.
I AM OF COURSE I'M BLACK, I AM
ALSO A PERSON ON THE AUTISM
SPECTRUM AND I AM HERE TODAY
BECAUSE I WANT TO GIVE YOU
ADVICE AND SHARE WITH YOU
INFORMATION FROM THE PERSPECTIVE
OF PEOPLE WITH DISABILITIES WHEN
IT COMES TO HOW TO IMPROVE OUR
HEALTH-CARE SYSTEM.
>>Joe: MAX, I'D LIKE TO START
WITH YOU.
DID YOU ASK SOME OF THE BARRIERS
YOU'VE EXPERIENCED PERSONALLY
AND RECEIVING HEALTHCARE?
>>SO, ONE BARRIER THAT I HAVEN
COUNT ERT PERSONALLY AND STILL
DO IS FILLING OUT FORMS THAT
HAVE QUESTIONS THAT ARE NOT
ACCESSIBLE, ESPECIALLY, ASKING
ME LIKE, WHERE I AM AT WITH
TAKING AND WHEN I GO INTO THE
DOCTOR, I FILL OUT PAPERWORK AND
SOMETIMES THEY NEED, THEY NEED
IT IMMEDIATELY AND BOOZE IT'S AN
ACCESSIBLE FOR ME TO UNDERSTAND
WHEN I READ IT, TO WHERE I CAN'T
ANSWER IT, BUT ALSO LIKE WITH
THE DEADLINE WHEN THEY NEED THAT
PAPERWORK DONE, IT MAKES ME FEEL
LIKE IT DOESN'T MAKE ME FEEL
SMART.
IN OTHER WORDS, I SHOULD SNOW
BETTER WHEN IT COMES TO DOING
THAT SO I WANTED TO POINT THAT
OUT.
ANOTHER BARRIER PEOPLE
EXPERIENCE IS REALLY KNOWING HOW
TO FUSE WHAT IS CALLED A MEDICAL
PORTAL.
DOCTORS SEND OUT TEST RESULTS TO
THE PORTAL AND WE NEED TO KNOW
TO GET THEM.
WE NEED GUIDANCE ON HOW TO TELL
PEOPLE WE DO NOT WANT TO USE THE
PORTAL AND AS A REASONABLE
ACCOMMODATION, WE WANT TO TALK
TO A LIVE PERSON ABOUT OUR TEST
RESULTS AND YOU KNOW, THIRD WE
NEED MORE INFORMATION ABOUT --
WE NEED MORE INFORMATION WHEN WE
GET A NEW MEDICATION, YOU KNOW.
BUT WHAT IT DO TO ME AND HOW AIM
SUPPOSED TO FEEL AND HOW WILL IT
INTERACT WITH THE OTHER
MEDICATIONS I'M ALREADY ON AND
WHAT DO I DO IN MY MEDICATION
MAKES ME SICK AND TIPS ONSETTING
UP AN EASY WAY TO REMEMBER TO
TAKE MEDICATIONS AND WHAT TO DO
IF A TAKE A MEDICATION AND THE
FOURTH THING IS COVID SHOWED ME
HOW THE CDC WEBSITE WAS NOT EASY
TO GET AROUND OR ANOTHER WORDS
LIKE TO NAVIGATE AND WHEN
INFORMATION STARTED COMING OUT
ABOUT LIKE, YOU KNOW, PEOPLE
THAT ARE MOST AT RISK OF GETTING
SIAND DYING FROM COVID, I AS A
PERSON OF COLOR WITH A
DISABILITY, I'M BLACK, I'M
AUTISTIC AND I HAVE ASTHMA AND
IT'S SAID LIKE WHEN THEY SAID
THAT LIKE, I'M AT RISK AND I WAS
IN A GROUP OF PEOPLE WHERE IT
WAS GETTING SICK FROM COVID AND
IT WAS NOT EASY TO FIND THAT AND
IT WAS JUST HARD TO FIND AND IT
WAS LIKE LINK AFTER LINK AND
THEN LINK WITHIN A LINK WITHIN A
LINK SO IT'S JUST THE
INFORMATION IS SO SCATTERED AND
BIG WITH BIG WORDS IT WASN'T
EASY TO UNDERSTAND IT ALL AND IT
JUST I WOULD LOSE WHERE I WAS AT
HIGH-RISK AND ANOTHER BETTER
YEAR AND THIS IS JUST MY LAST
POINT IN BARRIERS, HOW THEY
INTERACT WITH THE HEALTHCARE
PROFESSIONAL DURING AN
APPOINTMENT AND THERE ARE
DIFFERENT PEOPLE WHO CHECK, YOU
KNOW, CHECK YOU IN AND WHO
EXAMINE YOU, WHO SPECIFIC YOU
OUT AND THEY EXPECT OTHER WHAT
OTHER PEOPLE HAVE TOLD US AND
MANY, MANY MAY NOT, MANY PEOPLE
MAY NOT KNOW LIKE HOW TO BEST,
LIKE HOW BEST TO COMMUNICATE
WITH US.
SO, THOSE ARE THE BARRIERS THAT
I CAN THINK OF THAT COME TO
MIND.
>>THANK YOU.
AND, YOU KNOW, YOU ALSO
MENTIONED SOME ACCOMMODATIONS IN
THERE AS WELL AND I THINK THAT'S
THOSE ARE REALLY HELPFUL TO KEEP
IN MIND IN TERMS OF HOW WE CAN
MAKE HEALTHCARE MORE ACCESSIBLE
AND THE TYPES OF THINGS THAT
NEED TO BE STUDIED IN THE FUTURE
TO UNDERSTAND THAT.
SO WE HAVE A COMMENT IN THE Q&A
SHOULD BE DESIGNED FOR
ACCESSIBILITY AND INCLUSION AND
THROUGH THAT WE ARE WEB
EXPERIENCE AND MAX, WHAT YOU
WERE SAYING ABOUT THE DIFFICULTY
OF NAVIGATING THE WEBSITE IT'S
TRUE FOR EVERYONE AND DESIGNING
IT FOR IN CONCLUSIVE TEE WILL
HELP EVERYONE.
JENNIFER, I'M GOING TO ASK YOU
THE NEXT QUESTION.
SO, WHAT ACCESSIBILITY FEATURES
OR ACCOMMODATION HAVE MADE
HEALTHIER'S YEAR?
>>OKAY.
SO, FOR ME, BECAUSE SOME OF
THESE CLINICS DON'T HAVE THEM
WHERE I'M FROM.
WHEN THEY HAVE THE BED THAT CAN
LOWER DOWN ALL THE WAY, SO I CAN
TRANSFER ON TO OR SO THAT MY PCA
CAN HELP ME TRANSFER ON TO
WITHOUT HAVING TO STRUGGLE OR
THE RISK OF ME FALLING, THAT'S
FANTASTIC.
SOMETHING AS SIMPLE AS THAT OR
HAVING AN ACCESSIBLE REST ROOM
THAT IS ACCESSIBLE VERSE AS I
SIGN THAT AS, OKAY, IT'S
ACCESSIBILITY BUT IT'S NOT
REALLY ACCESSIBLE TO ME -6789D.
>>THE NEXT ONE I HAVE IS FOR
YOU, BARRIE.
I KNOW YOU HAVE A INTEREST IN
TRAINING.
AND SO, YOU KNOW, WHAT DO
MEDICAL STAFF, WHAT TYPES OF
TRAINING DO MEDICAL STAFF AND
RESEARCHERS AND SELF-ADVOCATES
NEED TO BETTER INTERACT WITH
THEIR ENVIRONMENT?
>>IT ACTUALLY, IT'S BASED ON
WHAT BOTH MAX AND NOT JENNIFER
JUST SAID IN TERMS OF THIS AND
THE SYSTEM IS SET UP THAT WE'RE
TOLD THAT THIS IS THE WAY IT IS
AND THIS IS THE PURE DEFINITION
OF ABLEISM THAT HERE IS THE
BASELINE AND FIGURE OUT AND YOU
PEOPLE THAT CAN'T FIGURE IT OUT.
THAT ITSELF IS A PROBLEM.
I MIGHT BE A LITTLE LONG WINDED
HERE BUT I WANT TO TAKE YOU BACK
A LINT OF HOW WE GOT TO THE
THINGS THAT WE'RE DOING IN THAT,
IN THE RESEARCH WORLD, MANY OF
YOU HAVE HEARD OF THE MOVEMENT
IN HEALTHCARE CALLED PATIENT
ENGAGEMENT.
THE IDEA OF PATIENTS AND THE
MEDICAL SYSTEM BEING PARTNERS
AND HELPING WITH HEALTHCARE AND
THAT SAME APPROACH HAS BEEN
APPLIED TO PATIENT ENGAGE UNTIL
THE RESEARCH AND BEING PARTNERS.
WHEN WE HEAR THE VERBIAGE OVER
IT OVER THE YEARS AND THIS IS
WHAT WE SHOULD BE DOING AND
THERE WASN'T A MECHANISM OR WAY
TO MAKE IT HAPPEN AND WE HAD TO
BREAK IT DOWN TO LOOK AT THE
BALANCE OF POWER WAS.
FOR SOMEONE LIKE MYSELF, IN
SPINAL CORD RESEARCH, DEALING
WITH RESEARCH, I'M NOT A
NEUROSCIENTIST SO THERE'S A FORM
OF INTIMIDATION AND WE LEARNED
OUR LESSONS FROM OTHER GROUPS
AND WHAT WE DID TOOK A PAGE OUT
OF THE RESEARCH SETTING AND THEY
DECIDED THAT HEY, WE'RE PUTTING
A LOT INTO THIS WITH MONEY AND
THIS IS ABOUT OUR COMMUNITY AND
RIGHT SEARCH IS TAKING PLACE BUT
IT'S NOT REFLECTING OUR
PRIORITIES.
NOR DO WE HAVE A SAY AND WE FEEL
THERE'S A DISCONNECT.
HERE IS WHAT WE NEED TO DO AND
INSTEAD OF EXPLAINING ABOUT IT
AND THAT'S THE BEST PART OF THIS
IS THAT WE NEED TO THEIR
LANGUAGE AND THE RESEARCH REALLY
THE RESEARCH DYNAMICS AND THE
RESEARCH ENTERPRISE AS WE CALLED
IT AND THEN WE WERE LESS
INTIMIDATED TO BE IN THE
CONVERSATION TO TELL THEM WHAT
WE NEED AND WE WANT.
WE DESIGNED A RESEARCH ADVOCACY
COURSE WHICH BROKE DOWN RESEARCH
IN LAY TERMS IT BROKE DOWN THE
PROCESS IN LAY TERMS AND WE FEEL
BY DOING THIS AND LEARN FROM
OTHER PEOPLE YOUR BUILDING
CAPACITY SO IT'S NOT JENNIFER
MAX AND BARRIE IT'S PUSHING FOR
CHANGE TO MAKE THINGS RIGHT AND
HOPEFULLY ON THE SAME PAGE
THAT'S WHAT CHANGES THE BALLA
PART.
I THINK THE SOLUTIONS LIKE
JENNIFER SAID SOMETHING THERE,
IT'S AS SIMPLE AS THAT AND YOU
KNOW HOW TIMES, IT'S AS SIMPLE
AS THAT IF FOR SOME REASON, IT
DOESN'T GET COMMUNICATED TO
THOSE THAT HAVE TO MAKE THE
DECISION TO MAKE IT WORK FOR US
SO, WE HAVE TO WORK ON IT AND I
THINK WE HAVE TO BEAR THE
RESPONSIBILITY TOO IN THIS
PARTNERSHIP AND WE CAN'T SAY
IT'S WRONG WE'RE ON THE OUTSIDE
LOOKING IN AND YOU HAVE TO HAVE
A SOLUTION AND YOU KNOW, WE CAN
EXPLAIN ACOMPLAIN ABOUT IT BUT R
HAVE A SOLUTION HOW WE THINK IT
SHOULD BE FIXED.
BY BUILDING CAPACITY THAT'S HOW
IT HAPPENS.
>>SO YOU HAVE YOUR HAND UP.
>>I DID.
I JUST WANT TO SAY THIS, WHEN IT
COMES TO TRAININGS, IT'S NOT
JUST ABOUT WHAT HEALTHCARE
PROVIDERS LEARN HOW TO DO AND
WHO THEY LEARN IT FROM.
LIKE, WHO KNOWS US BETTER THAN
WE KNOW OURSELVES?
AND LIKE ANY TRAINING, WHEN YOU
INVOLVE WITH US YOU GET OUR
PERSPECTIVE ON WHAT NEEDS TO
HAPPEN.
HOW CAN FAMILY LEARN TO ADVOCATE
FOR THEIR HEALTH?
>>WELL, I THINK MAX, TO WHAT
MAX SAID TOO, HOW DO WE
ADVOCATE?
WE HAVE TO BE ADVOCATES AND YOU
HAVE TO HAVE A BASELINE OF
KNOWLEDGE OF WHAT IT IS YOU WANT
TO CHANGE AND BASIS OF HOW THAT
CHANGES IN A REASONABLE FASHION.
WE CAN ASK FOR THE MOON.
IF YOU WANT IMMEDIATE RESULTS IT
WON'T HAPPEN THAT WAY.
THINGS LIKE MAJOR FUNDING.
WHAT IS A PRACTICAL SOLUTION?
YOU ALSO HAVE TO BE COMFORTABLE
BEING AN ADVOCATE AND I KEEP
GOING BACK TO THIS IS THAT, WE
NEED TO BE COMFORTABLE IN OUR
OWN SKIN AND WE'RE NOT
INTIMIDATED.
ONE OF THE DEFINITIONS IS
ABLEISM IS P PATRONNISM.
I WAS A 23-YEAR-OLD HEALTHY
WHITE MALE.
LIFE WAS GOOD.
GRADUATED UNIVERSITY, WHAT WAS
IN MY WAY?
MIDDLE-CLASS?
AND I BROKE MY NECK AND ALL OF A
SUDDEN I HAD PEOPLE PATTING ME
ON THE HEAD.
TALKING DOWN TO ME.
THIS IS A LIGHT SWITCH FOR ME
AND I HAD TO REALIZE I'M BEING
DISCRIMINATED AGAINST EVEN THE
MINORITY NOW AND WOW, THAT'S
WHAT IT'S LIKE.
YOU HAVE TO BUILD THAT
SELF-CONFIDENCE UP AGAIN TO SAY
NO, THIS IS NOT RIGHT.
SO IT'S A MATTER OF
SELF-CONFIDENCE BUT I THINK
THAT'S WHERE THAT CAPACITY
BUILDING COMES IN AND HOW DOES
ONE BECOME AN ADVOCATE AND YOU
DON'T SEE I'M AN ADVOCATE, YOU
LEARN BECAUSE KNOWLEDGE IS POWER
AND LEARN EVERYTHING THAT YOU
CAN ABOUT ALL OF THIS AND YOU
CAN PUT IT RIGHT BACK IT'S THE
BEST AMMUNITION YOU COULD USE.
>>I'D LIKE TO GET JENNIFER AND
MAX'S VIEW POINTS ON THIS.
WHAT'S YOUR VIEWPOINT, JENNIFER?
HOW CAN YOU LEARN TO BE A
SELF-ADVOCATE?
>>MY TAKE IS THE SAME AS -- I'M
SORRY, BARRIE'S.
I APOLOGIZE, MY SIGHT IS NOT
WELL TODAY.
I THINK KNOWLEDGE IS POWER AND
THE MORE KNOWLEDGEABLE YOU
BECOME, IT GIVES YOU I'M NOT
JUST SPEAKING FROM MY EXPERIENCE
AND I'M SPEAKING THOSE WHO DO
NOT HAVE A VOICE.
OR MAY NOT HAVE FOUND THEIR
VOICES YET.
BECAUSE KNOWLEDGE IS POWER.
I MEAN, AS A MOTHER WITH A
DISABILITY, IT'S VERY, VERY
INSULTING AND OFFENSIVE HOW MANY
TIMES THEY ASK ME, OH, YOU ARE
THE MOTHER BECAUSE MY CHILD
LOOKS ABLE-BODIED.
HE DOESN'T HAVE A VISIBLE
DISABILITY AND SO IT'S LIKE OH,
YOU ARE THE MOTHER.
REALLY?
WE ARE PEOPLE TOO.
WE HAVE LIVES TOO.
WE HAVE PERSONALITIES TOO.
LIFE DIDN'T STOP JUST BECAUSE WE
HAVE TO USE A MOBILITY DEVICE.
OR ANY OTHER CHANGES THAT ARE
HAPPENING OR WE WERE BORN IN
THIS SITUATION.
IT JUST DOESN'T STOP.
>>Joe: RIGHT.
AND MAX, CAN I TURN TO YOU?
HOW WOULD YOU TELL PEOPLE TO BE
A SELF-ADVOCATE?
>>WELL, I THINK THAT WHAT IT
STARTS WITH IS WE NEED FIRST OF
ALL WE NEED TO INVEST IN
TRAINING AND HIRING PEERS TO
NAVIGATE THE SYSTEM AND WE FEEL
MORE COMFORTABLE GETTING ADVICE
FROM A PEER, LIKE, A PEER WILL
KNOW WHAT IT IS LIKE GROWING UP
WITH A DISABILITY.
A PEER SUPPORTER KNOWS HOW IT
FEELS TO EXPERIENCE
DISCRIMINATION WHEN TRYING TO
ACCESS HEALTHCARE AND WE CAN
LEARN FROM A PEER HOW TO
ADVOCATE.
>>Joe: I'M LOOKING THROUGH THE
QUESTIONS AND I'M LISTENING.
WHAT QUESTIONS FROM THE CHAT,
WHAT ROLE DO YOU THINK NIH HAS
IN FOSTERING ADVOCATES FOR
DISABILITIES INCLUSION AND TRUE
ACCESSIBILITY?
>>AND I THINK I'LL START WITH
JENNIFER.
>>I JUST WANT TO SAY THAT I
THINK NIH -- THANK NIH FOR
PROVIDING THESE WEBINARS BECAUSE
IT GIVES US A PLATFORM TO
EXPRESS OUR NEEDS AND MAYBE OUR
IDEAS AND SUGGESTIONS FOR THE
CHANGES.
I THINK THAT WHAT MAX SAYS IS
CORRECT.
IF WE GET MORE PEER-TO-PEER
INVOLVEMENT IN TRAINING MAYBE
THIS WILL OPEN EYES OF NOT JUST
THE MEDICAL COMMUNITY BUT
SOCIETY IN GEM TO THE U.S. IS A
FORCE TO BE RECKONED WITH.
>>Joe: NEXT I'D GO TO MAX.
WHAT ROLE DOES THE NIH HAVE FOR
ACCESSING ADVOCATES AND
INCLUSION AND TRUE
ACCESSIBILITY?
>>I BELIEVE EVERYTHING I JUST
SAID BEFORE IN THE LAST TWO
QUESTIONS.
I THINK JUST KEEPING IN MIND
THAT, YOU KNOW, LIKE WE JUST --
THE THING IS, WE NEED TO FIND
WAYS TO REWARD RESEARCHERS WHO
TAKE THE TIME TO PROVIDE
COGNITIVELY ACCESSIBLE VERSIONS
OF THEIR FINDINGS AND IT BEGINS
WITH, YOU KNOW, PRESUMING
COMPETENCE.
PEOPLE ARE NOT SMART ENOUGH TO
USE RESEARCH FINDINGS TO IMPROVE
OUR LIVES AND BELIEVE WE ARE
CAPABLE OF UNDERSTANDING IN LIKE
YOUR RESEARCH AND WORK WITH US
TO DETERMINE WHAT IS THE MOST
IMPORTANT INFORMATION TO FOCUS
ON AT ANY GIVEN TIME AND WHEN WE
WORK TOGETHER AS A TEAM, YOU
INCREASE YOUR IMPACT BECAUSE
DISABLED PEOPLE ARE OFTEN MORE
INTERESTED IN READING
INFORMATION THAT IS WRITTEN FROM
THE POINT MUCH VIEW OF SOMEONE
WITH A DISABILITY, YOU KNOW.
THIS IS WILL BE A NEED THERE'S A
NEED FOR RESEARCH AND ADVOCATES
AND PROVIDERS TO FINDING WAYS TO
APPLY RESEARCH FINDINGS FOR
EXAMPLE, IF WE ARE TRYING TO
RECOMMEND STRATEGIES WHERE, YOU
KNOW, WHERE CAN WE GET HELP FOR
IT?
WHERE CAN WE GO FOR HELP IF IT'S
NEEDED AND TO GO FOR HELP.
WHEN RESEARCHERS TEAM UP, WITH
SELF-ADVOCATES WE CAN UNDERSTAND
HOW RECOMMENDATIONS ARE
IMPACTING OUR LIVES.
ARE THERE ANY OF UNINTENDED
CONSEQUENCES BOTH NEGATIVE AND
POSITIVE?
I MEAN ARE THERE ISSUES OF
PERSONAL RIGHTS THAT NEED TO BE
LOOKED AT.
SO JUST COPE THESE THINGS IN
CONSIDERATION AND THANK YOU.
>>Joe: AND I THINK THAT'S A
GOOD SEG WAY TO BARRY, I MEAN,
YOU KNOW, YOU ARE WORKING ON
THIS TRAINING COURSE FOR PEOPLE
TO BE ABLE TO SELF-ADVOCATE AND
BE PART OF THE RESEARCH PROCESS.
SO, WHAT DO YOU THINK OF THE
NEXT STEPS FOR NIH TO TAKE TO BE
ABLE TO LEVERAGE THAT?
>>THIS IS MY ONE SHOT TO SAY TO
NIH.
THIS IS GREAT.
MY FRIENDS AT NINDS WERE SPINAL
CORD RESEARCH LIES THEY KNOWS
WHAT IS COMING OUT OF MY MOUTH
RIGHT NOW.
I THINK IN GENERAL, WE'RE
STARTED TO GO GO DOWN THE RIGHT
PATH SO THAT'S ENCOURAGING BUT
IN GENERAL, WE NEED TO ENCOURAGE
AND NURTURE -- I CALL IT THE
PARTNERSHIPS.
SO, YES, WE HAVE TO BUILD
CAPACITY AT OUR END BUT PEOPLE
CONDUCTING THE RESEARCHERS NEED
TO KNOW ABOUT OUR COMMUNITY WHO
ARE WE ARE AND WHAT EFFECTS WHAT
OUR PRIORITIES ARE.
IT'S ASTOUNDING TO FIND OUT HOW
MANY RESEARCHERS THAT SPECIALIZE
IN SPINAL CORD RESEARCH NEVER
MET A PERSON WITH SPINAL CORD
INJURY AND IT'S FASCINATING AND
YOU DON'T LEARN IT OUT OF A
TEXTBOOK.
YOU NEED TO UNDERSTAND US.
THERE ARE WAYS THAT WE CAN BRING
THAT TOGETHER AND THAT COULD BE
THROUGH WORKSHOPS AND THROUGH
MEETINGS AND MORE OF THESE
THINGS AND MORE ENGAGEMENT THAT
WAY.
NUMBER TWO, IS THEY MAKE IT
MANDATORY A NIH GRANT
APPLICATION HAS A PERSON WITH
LIVED EXPERIENCE AS AS FAR AS
THE GRANT TEAM.
THE DOD DOES IT, THE PDA DOES
IT, AND THE NIH DOES NOT YET AND
WHAT THAT MEANS IS, NOT JUST TO
HAVE A TOKENNIST PERSON SITTING
THERE AND PART OF A GRANT TEAM
BUT SOMEONE THAT ACTUALLY IS
PART OF MEANINGFUL ENGAGEMENT
WHERE, IT COULD BE ENCOURAGED
THROUGH THE GRANT APPLICATION
THAT A PORTION OF THE FUNDS THAT
ARE ACTUALLY GIVEN OUT TO THE
PEOPLE THAT ARE AWARD WINNERS
AND GRANTS WOULD GO TOWARDS
ENGAGEMENT PLAN THAT WOULD BRING
IN PEOPLE WITH SPINE OR CORD
INJURIES FROM OUR COMMITTEE, NOT
JUST OUR COMMITTEE AND OTHER
COMMUNITIES AT THE TABLE PART OF
THE GRANT TEAM ADVISING ON THE
RESEARCH AND HELPING WITH THE IS
DISSEMINATION OF THE RESEARCH
AND IN FACT IT TURNS INTO THE
HEALTH WITH IMPROVEMENT AND WE
ALL KNOW, THERE'S A LOT OF GREAT
RESEARCH AND NOT ENOUGH PEOPLE
AND THE GREATEST PROBLEM WITH
THAT IS DESIGNING RESEARCH THAT
DEVELOPS THE PEOPLE WITH LIVED
EXPERIENCE FROM THE BEGINNING OF
THE DESIGN AND WE SHOULD BE
THOSE THAT HELP THEM ASK THE
QUESTIONS BEFORE THEY DESIGN A
QUESTION WITHOUT TALKING TO US.
>>THANK YOU, THAT WAS GREAT.
>>YOU ARE WELCOME.
I WILL SAY THAT HERE WE HAVE
BEGUN AT LEAST WITH OUR TO
INCLUDE LANGUAGE SURROUNDING
PEOPLE WITH LIVED EXPERIENCE AND
INCLUDING PEOPLE ON THE STUDY
TEAM AND SO IT'S SOMETHING THAT
IS ON OUR RADAR IN THE
REHABILITATION STAGE.
FROM THE OFFICE AND EQUITY
INCLUSION AND HERE AT NIH.
AND SHE'S NOTING THAT THEY HAVE
A PRINCIPLE STRATEGIST DEDICATED
TO ADDRESSING THE ISSUES
SURROUNDING ABLEISM AT NIH AND
DEVELOPED A FIVE-YEAR PLAN FOR
THIS COMMUNITY WITHIN NIH AND
PERHAPS BEING ACTIVE IN EMPLOYEE
RESEARCH GROUPS IT'S AN INTERNAL
NIH PROGRAM WORKING TO ADDRESS
THTHIS TO ADDRESS ABLEISM.
LET ME GO -- LET ME SEE.
LET ME GO TO MAX NEXT.
WE HAVE A FEW MINUTES LEFT.
DO YOU HAVE A VISION OF WHAT
ANCILLARY SERVICE PROVIDERS
COULD DO OR HOW OR WHAT HAVE YOU
EXPERIENCED THAT COULD BE
EXPANDED?
SO, FOR THOSE, FOR THOSE PEOPLE
WHO HELP YOU NAVIGATE THE
HEALTH-CARE SYSTEM, WHAT CAN YOU
PROVIDE OTHER CONCRETE EXAMPLES
OF WHAT COULD BE OFFERED TO HELP
YOU NAVIGATE THE HEALTH-CARE
SYSTEM?
PEER SUPPORT.
I WOULD SAY YOU WILL FIND IT AND
WE FEEL MORE COMFORTABLE
REQUEST, YOU KNOW, PEERS AND.
>>YOU ARE RIGHT.
I THINK WE'VE ADDRESSED THAT
QUESTION.
LET ME GO TO THE NEXT QUESTION.
AGAIN, SO I'LL START WITH YOU,
MAX.
HAVE YOU PARTICIPATED IN
BIOMEDICAL OR BEHAVIORAL
RESEARCH AND IF NOT WHAT BERRIEN
YEARS PREVENTED YOUR INCLUSION?
>>YEAH, THE WAY I WOULD ANSWER
THIS QUESTION IS LIKE AGAIN, YOU
WANT TO FOCUS ON PLAIN LANGUAGE
BECAUSE NO YOU KNOW, THAT'S HOW
WE'RE GOING TO BE INVOLVED AND
THE BIOMEDICAL RESEARCH IF
THINGS ARE WRITTEN IN A WAY THAT
YOU KNOW, THAT WE CAN UNDERSTAND
THAT WAY WE CAN GET INVOLVED
WITH THAT.
I WOULD SAY, WHEN YOU WANT US TO
BE INVOLVED GIVE US TIME TO
REVIEW INFORMATION AHEAD OF TIME
THAT WAY WE KNOW WHAT WE'RE
GETTING OURSELVES INTO AND MAKE
SURE THAT INFORMATION IS ALSO IN
PLAN LANES AND THAT'S IMPORTANT
TO KEEP IN MIND AND LIKE HAVE
LIKE SUMMARIES OF WHAT MAY HAVE
HAPPENED AT ANY KIND OF MEETINGS
OR SOMETHING OR LIKE YOU KNOW,
MEETINGS OR GATHERINGS THAT HAVE
TO DO WITH BIOMEDICAL TRAINING
AND I WOULD SAY TOO, IF YOU WANT
PEOPLE WITH DISABILITIES TO GET
INVOLVED, YOU KNOW, PAY US.
PAY US TO DO THIS WORK.
WE ARE THE EXPERTS.
AS PEOPLE WITH LIVED EXPERIENCE.
WE'RE GOING TO KNOW WHAT WE NEED
AND WANT OUT OF THE HEALTH-CARE
SYSTEM THROUGH OIR EXPERIENCE
GROWING UP AS PEOPLE WITH
DISABILITIES.
>>Joe: JENNIFER, I'LL TURN TO
YOU.
HAVE YOU PARTICIPATED AND WHY OR
WHY NOT?
>>I HAVE IN A FEW STUDIES IN
BEHAVIORAL STUDIES AND WHAT MADE
IT EASIER FOR ME BECAUSE WAS
EITHER VIRTUAL SUCH AS THE ZOOM
MEETING HERE OR TRANSPORTATION
BECAUSE A LOT OF TIMES IT'S VERY
DIFFICULT FOR PEOPLE WITH
MOBILITY SITUATIONS TO ATTAIN
TRANSPORTATION THAT ISN'T GOING
TO BREAK THE BANK.
I MEAN, I CAN'T PAY $90 A RIDE
I'M SORRY, IT'S NOT FEASIBLE.
AND A LOT OF US, WE DON'T DRIVE.
I MEAN, I DON'T DRIVE.
THOSE ARE THE BARRIERS THAT I
FACE, ESPECIALLY WITH
TRANSPORTATION OR THE BUILDINGS
REALLY ACCESSIBLE?
>>Joe: I WILL SAY, AS SOMEONE
WHO MANAGED GRANTS, I DO SEE
MORE REQUESTS COMING IN ASKING
FOR REIMBURSEMENT FOR TRAVEL
EXPENSES.
AND I'M JUST CURIOUS, WHAT WAS
YOUR PREFERRED BE.
LYFT OR UBER OR SOMETHING MORE
FORMALIZED?
>>I THINK THAT A LOT OF
PEOPLE -- LIKE IN OUR AREA,
FINDING AN UBER DRIVER THAT IS
ACCESSIBLE, ESPECIALLY WHEN YOU
HAVE A POWER CHAIR, IS
RIDICULOUSLY DIFFICULT.
I LIVE IN THE MIDWEST IN THE
KANSAS CITY AREA AND IT IS
RIDICULOUSLY DIFFICULT TO FIND
AN UBER DRIVER THAT'S NOT
WILLING TO CHARGE AN ARM AND A
LEG BECAUSE YOU HAVE A POWER,
WHAT THEY CALL A POWER OPERATED
VEHICLE.
YOU KNOW, SO REIMBURSEMENT OF
TRAVEL EXPENSES IS GREAT.
BEING COMPENSATED FOR THINGS
THAT YOU K YOU KNOW AND YOU LIVE
THROUGH EVERYDAY THAT'S
FANTASTIC.
ALSO, ACKNOWLEDGMENT OF THE FACT
THAT WE HAVE TO DO THINGS MAY
HAVE TO DO THINGS IN NOT THE
AVERAGE WAY.
MY SON AND I HAVE A SAYING, A
ADAPT AND ROLL.
WE ADAPT AND WE ROLL.
NOT EVERYONE IS GOING TO DO
THINGS THE SAME WAY.
>>Joe: RIGHT.
BARRY, ARE YOU PARTICIPATED IN
RESEARCH?
WHY AND WHY NOT?
>>YES, I HAVE.
NOT A LOT.
I'VE COORDINATED MORE BUT I GO
BACK TO WHAT MAX SAID AND
JENNIFER SAID TOO IT'S THAT,
THERE HAS TO BE APPRECIATION
FIRST OF WHAT DAILY SCHEDULE IS
LIKE AND BOOKING 7:00 IN THE
MORNING APPOINTMENTS IS
IMPOSSIBLE FOR BACK TO WHAT MAX
SAID, I KEEP GOING BACK TO WHAT
HE SAYS TOO.
IT'S HAVING A PEER NAVIGATE OR,
PEER SUPPORT AND COMPENSATION
FOR OUR TIMES I SEE BUDGETS FOR
RESEARCH AND CONSULTANTS GETTING
PAID HERE CONSULTINGS GETTING
PAID THERE AND LAB TECHNICIANS
GETTING THIS IN AND THERE'S THIS
SORT OF VOLUNTEER HONORARY AND
ADVICE AND WHO IS THAT AND THEN
WE HAVE A PROBLEM TOO IF YOU ARE
ON MEDICATE AND YOU WANT TO BE A
ACTIVE PARTICIPANTS AND THERE'S
PEOPLE WORKING BEHIND THE SCENES
AND GETTING GIFT CARDS AND THIS
IS SOMETHING THAT HAS TO AND WE
SHOULD BE ABLE TO FELT AND NOT T
JEOPARDIZE OUR DISABILITY
FUNDING.
JENNIFER, DO YOU HAVE ANY
CLOSING REMARKS YOU'D LIKE TO
MAKE?
>>JUST REMEMBER ANYONE CAN
BECOME DISABLED AT ANY POINT IN
TIME SO IT'S BETTER TO LEARN
FROM A PERSON WHO IS LIVING IN A
SITUATION THAN TO ASSUME YOU
KNOW EVERYTHING ABOUT THE
SITUATION.
EXCUSE ME JUST ONE SECOND.
AND I FIRMLY BELIEVE THAT IF YOU
TAKE THE TIME TO LISTEN, AND TO
OFFER TRAINING WITHOUT BEING
PATRONIZING, THAT THAT WOULD BE
FANTASTIC.
BECAUSE IF YOU PAT TORONTO EYESM
GOING TO DO MY BEST TO PROVE YOU
WRONG.
NOT EVERYONE WORKS THAT WAY.
>>Joe: MAX, ANY PARTING WORDS
AS WE CLOSE DAY ONE?
>>UM -- YOU KNOW, I JUST WANT
TO SAY LIKE YOU KNOW, JUST TAKE
UNTIL CONSIDERATION WHAT I
SHARED, WHAT YOU KNOW THE OTHER
PANELISTS, JENNIFER AND EVEN
BARRY SHARED AND THE ONLY THING
I CAN SAY IS, LIKE, COVID WAS,
IT WAS REALLY TOUGH.
I WILL SAY THAT EVERYTHING THAT
THE HEALTH DEPARTMENTS KNEW
ABOUT INCLUSION WAS FORGOTTEN
DURING THE PANDEMIC.
WE NEED TO LIKE GO BACK TO BEING
INCLUDED AND PLANNING FOR, YOU
KNOW, IMPLEMENTATION, YOU KNOW,
GETTING THE HEALTH-CARE SYSTEM
AS A WHOLE TO, YOU KNOW, MAKE
SURE THAT WE DON'T SLIP THROUGH
THE CRACKS.
NOTHING ABOUT US WITHOUT US,
TAKE US SERIOUSLY, YOU KNOW,
WHEN WE'RE AT THE TABLE.
WHEN YOU INVOLVE US.
AND JUST WORK WITH US AND YOU
WILL GET A LOT OF BENEFICIAL
FACTS THROUGH EXPERIENCE OUT OF
HOW WE LIVE OUR LIVES THROUGH
OUR, YOU KNOW, OUR KNOWLEDGEEL
OF GROWING UP AS PEOPLE WITH
DISABILITIES.
>>Joe: THANK YOU.
AND BARRY, ANY FINAL?
>>WELL 100% I AGREE WITH MAX
JUST SAID.
NOTHING ABOUT US WITHOUT US.
WE ARE THE EXPERTS.
IT'S -- I DON'T UNDERSTAND HOW
REALLY SMART PEOPLE CHOSE TO
IGNORE THE GREATEST RESOURCES
SITTING IN FRONT OF IT THEM ALL
THE TIME AND SYSTEMATICALLY FOR
DECADES AND THAT IF THEY WANT TO
IMPROVE THE SYSTEM AND IF THEY
REALLY WANT TO IMPROVE THE
SYSTEM, THEY SHOULD BE IN
PARTNERSHIP WITH THOSE PEOPLE
WHO HAVE THE EXPERTISE MORE THAN
ANYBODY ELSE, THE EXPERIENCE
MORE THAN ANYBODY ELSE, TO
REALLY SHARE THAT TOGETHER AND
WE OWE IT TO THEM TO REFINE OUR
MESSAGES AND MAKE SURE THAT WE
CAN SHARE IT WITHOUT ANGER AND
EMOTIONS AND REALLY GET IT DONE
AND I THINK A TRUE PARTNERSHIP
BETWEEN CAREGIVERS, MEDICAL
PRACTITIONERS AND RESEARCHERS
AND THE COMMUNITIES THAT THEY'RE
SURVEYING IS THE WAY WE CAN
DRIVE THINGS FORWARD IN A
PRODUCTIVE WAY.
>>Joe: THANK YOU.
AND BARRY YOU HAVE A QR CODE.
>>I SENT IT IN BUT IT IS FINE
IF THE PARTICIPANTS WANT IT THEY
CAN REQUEST IT, I GUESS.
IF THEY WANT TO LEARN ABOUT WHAT
WE'RE DOING.
>>Joe: I'LL GET THAT.
I THINK WE'RE AT 4:00 RIGHT NOW.
I THINK ON THE AGENDA -- I THINK
IS ANYONE ELSE COMING ON TO
WRAP-UP.
THERE IT IS, PERFECT.
>>THANK YOU.
>>YOU WANT TO QUEEN ELIZABETH
EXPLAIN THE QRCODES.
>>IT'S THIS TOPIC TODAY AND HOW
PEOPLE, OUR COMMUNITIES CAN BE
BETTER PARTNERS AND RESEARCH AND
BUILDING A CAPACITY SO WE CAN
WORK TOGETHER ON SOLVING PEOPLE
AND BEING INVOLVED IN ENGAGEMENT
AND WE HAVE AN ORGANIZATION THAT
IS BROUGHT TOGETHER ALL THESE
ORGANIZATIONS THROUGHOUT NORTH
AMERICAN AND CONSORTIUM AND
TOGETHER WE BUILT THIS PROGRAM
CALLED THE SCI RESEARCH ADVOCACY
SOURCE SO ANYBODY THAT HAS ANY
INTEREST THEY WANT TO TAKE A
LOOK AT IT.
EVEN IF IT'S NOT SPECIFIC TO
SPINAL CORD INJURIES FOR
THEMSELVES, THEY MIGHT WANT TO
SEE HOW THEY PUT IT TOGETHER AND
MAY WANT TAKE LEARNING BACK INTO
ANOTHER AREA.
>>RIGHT.
I'M GOING TO HAND IT OFF TO MY
COLLEAGUE.
>>DID YOU TO ALL THE SPEAKERS.
>>THANK YOU.
>>BARRIE, MAX AND JENNIFER.
>>ALL RIGHT.
>>THANK YOU FOR HAVING US.
>>THANK YOU.
>>YOU ARE VERY WELCOME.
>>ALL RIGHT.
WELL, GOOD AFTERNOON, EVERYONE,
I WANT TO REASSURE YOU THAT I A?
>>YES.
>>AWESOME.
I WANT TO REASSURE YOU THAT I AM
HERE JUST TO SAY A FEW WORDS.
IT'S BEEN A RICH DAY AND I'M
SURE THAT WE ARE ALL EAGER TO
SIT WITH OUR THOUGHTS AND GET
READY FOR TOMORROW.
I'M ROSLYN KING FROM THE OFFICE
OF THE BEHAVIORAL AND SOCIAL
SCIENCES RESEARCH AT THE NIH.
I'M A WHITE WOMAN WITH DARK,
BROWN WAVY HAIR THAT GOES PAST
MY SHOULDERS AND I'M WEARING A
LIGHT GRAY CARN A BEG BEGAN OVEA
COLORED SHIRT.
I HOPE EVERYONE ENJOYED THE
IMPRESSIVE MIX OF DATA ANALYSIS
AND FRAMEWORKS AND PERSONAL
INSIGHTS THAT OUR SPEAKERS
SHARED WITH US TODAY.
MANY PARTICIPANTS HAVE ALSO MADE
COMMENTS ABOUT THE NEED TO
INCREASE REPRESENTATION OF
PERSONS WITH DISABILITIES AND
THE SCIENTIFIC AND BIOMEDICAL
WORKFORCE AND WE'LL DIG INTO
THAT TOPIC IN TOMORROW'S SESSION
AMONG OTHERS.
FOR MYSELF, I HAVE FOUND THE
ATTENTION TO SOCIAL HISTORY,
PUBLIC POLICY, AND INTER
INTERSECTIONALITY ENLIGHTENING
TO THANK YOU TO OUR WEBINAR
PARTICIPANTS.
WE APPRECIATE YOUR ATTENTION AND
QUESTIONS.
I WANT TO REMIND EVERYONE THAT
WE'LL START AT 10:30 A.M.
EASTERN TIME ZONE TOMORROW
MORNING AND PLEASE REMEMBER TO
CHECK YOUR ZOOM SETTINGS WHEN
YOU HAVE LOGGED INTO MAKE SURE
YOU HAVE SIDE BY SIDE SPEAKER
VIEW IN ORDER TO SEE THE ASL
INTERPRETER AND PLEASE CONTINUE
TO POST YOUR QUESTIONS AND
TECHNICAL DIFFICULTIES IN THE
Q&A AND WE WILL RESPOND TO THEM
AS QUICKLY AS WE ARE ABLE.
SO THANK YOU ALL AGAIN VERY MUCH
AND HAVE A WONDERFUL EVENING.