Disability and Citizenship | Introductory Remarks and Keynote Conversation || Radcliffe Institute

Disability and Citizenship | Introductory Remarks and Keynote Conversation || Radcliffe Institute


– Good morning, everyone. I’m Tomiko Brown-Nagin the
dean of the Radcliffe Institute for Advanced Study here
at Harvard University. I’m delighted to see all of
you who are gathered here today for this important conference. Disability rights, advocates,
scholars, practitioners, students and community
members, welcome to Radcliffe. I want to begin by thanking
today’s distinguished guests for participating in this event. Thanks as well to
Rebecca Wasserman, who is the executive director
of academic ventures here at Radcliffe, to Jessica
Vicklund, director of events, and to their outstanding teams. I’m especially grateful to
our moderators, Cheri Blauwet and Michael Stein for
co-directing the planning committee that conceptualized
this conference, and I’ll introduce them
and turn things over to them in just a minute. First, I want to start off with
some words about this really important topic that
we’re considering today. We will explore how ideas
of belonging, community, and citizenship interact
both with our understanding of disability and with
important policy questions related to disability. We know from research and from
abundant anecdotal evidence, that people with disabilities
often face multiple barriers to full societal inclusion, and
to freely and fully exercising their citizenship rights. These barriers include stigma,
and exclusionary social norms, inaccessible built environments,
prejudice, overt discrimination and more. People with disabilities,
also, are frequently precluded from accessing
equal education, health care, and other critical benefits. This is both a civil rights
and a human rights issue. Here in the United States,
we’ve made some progress in the realm of
legal protection. It was 28 years ago that
Congress passed the Americans with Disabilities Act of 1990
with strong, bipartisan support in Congress– both the Senate and the House. The ADA prohibited disability
based discrimination in all areas of
public life, including at school and at work. But we have not
fully conceptualized, much less realized, equality for
individuals with disabilities. Anti-discrimination laws
like the ADA are necessary and they’re very important. But they’re not sufficient to
ensure dignity and equality. This is partly because
we often fall short when it comes to
implementation of the law. But more fundamentally, it’s
because ’80s discrimination laws do exactly what you
think they do, and not more. They prohibit discrimination
and they demand equal treatment before the law. But as Michael has so
compellingly argued, equal treatment before the law
can coincide with seriously unequal opportunity. This is especially true
in the case of disability. To achieve true equality
and full inclusion, we need a much broader
set of policy measures and other levers of
global and local change. Our speakers today will
highlight the breadth and the complexity of these
and other critical issues at the intersection of
disability and citizenship. And they’ll explore
how we, as a society, can make meaningful progress
at the international level, at the national level,
and yes, here at Harvard. To kick things off we’re going
to introduce to you Cheri Blauwet and Michael Stein. I am delighted to
have both of them here and you can read more
about them in our program. Cheri is an assistant
professor of Physical Medicine and Rehabilitation at
Harvard Medical School, and she’s a physician at Brigham
and Women’s in the Spalding rehabilitation hospital. Cheri, also, is a three
time Paralympic athlete in wheelchair racing with
seven medals to her name. And she’s a two time winner
of both the Boston and the New York City marathons. Yes. [APPLAUSE] Michael, my law
school colleague, is the co-founder and
executive director of the Harvard Law School
project on disability, and a visiting professor
at Harvard Law School. He is one of the world’s leading
experts on disability law and policy, and he helped
to draft the United Nations Convention on the Rights of
Persons with Disabilities. He regularly consults
with governments and nongovernmental
organizations across the world on
disability laws and policies. Please join me in warmly
welcoming Cheri Blauwet and Michael Stein. [APPLAUSE] – Thank you everyone
and good morning. And thank you, dean, for
the very kind introduction, and for this truly
profound opportunity to be here with you
today for our discussion around disability
and citizenship global and local perspectives. It’s really incredible to look
out upon this audience, and so many colleagues and
friends, both old and new, as well as knowing that
so many are tuning in over the Livestream– from literally
across the country and from many corners
of the world– gathered to join us for this
really timely and really important discussion. We’d like to take a moment to
reflect upon how we got here and to particularly thank
our hosts, the Radcliffe Institute for Advanced Studies,
who have supported this journey and served a really critical
role in bringing this together, catalyzing
this event, convening and sponsoring the initiative. So approximately a
year and a half ago, I had the opportunity to
meet with Becky Wasserman– who is the Executive Director
for the Radcliffe Institute for Advanced Study– to learn more about
various ways that we could engage with their work. And in that conversation
she shared with me that the theme for
the coming year would be based
around citizenship. And of course,
when I heard this, my interest was
initially very piqued, and my wheels started
turning in my head. And after a few
seconds we said, well, do you think we could do
something around disability and citizenship? And as I recall, I
think Becky paused, and a smile sort of
spread across her face, and the idea was really
born in that moment, in immediately realizing
that there’s a conversation to be had. A very important and timely
one that brings us all together here today. So our journey
will explore a lot of themes around
citizenship and disability with particular focus on
things like cross generational perspectives, thinking
about intersectionality, higher education, thinking about
cross-cultural perspectives. What this experience
is like and how we think about disability
and citizenship not only here in the US,
but around the world. We’ll really think
about how this can be translated into
policy and systems change so that these
conversations can be taken out of the walls of this room, or
even outside of the live stream and really thinking
about how we can impact what’s going on in our
world in such a dynamic time. And we’ll get to
ask hard questions, like what can really
be done to elevate our voice as a
disability community, and be taken seriously in this
national and international discourse around
diversity and inclusion? And in a world where currently
topics around race, gender, sexual orientation,
other minority based issues are really
at top of mind, how can we come together to have our voices
heard in those conversations? Most importantly,
when we think about the current political
context, what’s happening around disability? Are people becoming more
engaged or more disenfranchised? These are all
difficult questions and meaningful conversations
that we’ll have the opportunity to explore today. And I think that all
of us in this room know that for the
one billion people around the world with a
disability the time to act is really now. And we really need to bring
recognition to the fact that disability impacts
every single one of us, indeed it’s a ubiquitous
life experience. These conversations don’t just
impact a small group of people, but really every citizen of
our country and of our world. I was only 10 years old when
the ADA was passed in 1990 as the dean just described. And at that time I was
living on our family farm and I had no idea
that a law had just passed that would impact
my life so dramatically. Little did I know
that opportunities, like being able to
compete as an athlete, to go to medical school
and practice as a physician here at Harvard, would be some
of the outcomes of that law and all the advocacy
that came around in enacting it and bringing it
to its impact across cultures. So I really am a
member of what we would call that ADA generation. And we’ve had the
privilege of being a beneficiary of that
groundwork in many ways. And particularly, a
beneficiary of the work that’s been ongoing
for so many decades by people that will be
speaking here today, like Judy and Andy and
Tom and so many others of our distinguished guests. So we’re so profoundly
thankful for that, but we know there’s a
future ahead that we need to think about critically. So before we begin, a
few housekeeping notes. If your social media
inclined, please don’t hesitate to use
the hashtag, which is I believe around, its
hashtag disability citizenship. And we’d love for the
social media conversation to really take
off and for people to notice what we’re doing
here today, so don’t be shy. There’s restrooms
on every floor, and there will be a break
officially at 11:15, but of course, please
feel free to come and go if you need to prior to that. And there’s also an
address and a link that’s printed on the
front page of your program, if you would like to
access a Carte services and if that would be helpful. So with that, I’m going to hand
it over to Professor Stein. – Thank you Dr. Blauwet. And before introducing our
keynote and discussant, I just want to echo Cheri in
thanking Radcliffe and the dean and Becky and Jessica
and everyone else for convening this event. It’s probably the
fourth or fifth event that I’ve participated
in with Radcliffe, and it’s a demonstration of
how Radcliffe situates itself within the university
as a convening force to pull together all kinds of
disciplines and perspectives, to focus on particular
issues, and to be inclusive. And so kudos to that. And to my colleague I wish
you a wonderful deanship. I will play with you as
often as you can tolerate me. It is a wonderful day today,
because not only do we have a terrific subject that’s
important and well listened to and that will be transmitted,
but selfishly, Cheri and I get to see our friends. And we very much
appreciate that as well, and we thank you for
coming out and making time from your enormously
busy schedules. Some of our speakers,
as you will hear, literally, are around the
world and in between trips around the world and
they’ve made the time to be with us today. So thank you very
much to our speakers. My privilege is I get
to say nice things about Judy Heumann and
Tom Hehir without them getting too object. So our discussant, and
I will follow the dean and noting that we have
the BIOS in your forms, and I’m not going to
read them because that would be a waste of time. I’d rather tell you
some of the things that are not in the BIOS. Our discussant, Tom Hehir,
a professor at the Graduate School of Education,
as you know, worked under the
Clinton administration and helped to formulate the
regulations for the individuals Disabilities Education Act
after its re-authorization. Things that are now
being challenged by current governmental
objectives. But what you don’t
have in your booklet is that although he
claims to be retiring, and somehow I’m going to find
in my heart to forgive you at some point, Tom is
the glue on disability around the university. Students with
disabilities, those of us who teach in the area of
disability, those of us who have disabilities and are on
the professional side of it, Tom is the leading person. He’s the one we
all connect with. And we enjoy our interaction
and we learn from him. Tom has used his knowledge as
a Chicago deputy supervisor of schools, as a Boston
School supervisor, as a person who has
assessed inclusive education around the world, but also doing
particular studies in Boston and New York to illuminate the
role of inclusive education and how it’s not only
possible, but it makes sense. He has used his scholarly
agenda to describe how students with disabilities
got to Harvard, how do you achieve the mountain,
and what things went into achieving the
mountain and what lessons we can learn from it. But for the students
with disabilities who we have across
the university, if they happen to be unfortunate
enough to have my class, will tell me, you know,
I’ve had Tom Hehir’s class. You are, you’ve been a
conspirator, a friend. I have enormously enjoyed so
much when we do home and away visits in our classes, and
our regular conferences between HPOD Harvard
Project on disability and Harvard Graduate
School of Education, and we’re not going
to let you retire. We’re not possibly
letting you retire. Our keynote, Dr. Judith Human
doesn’t need an introduction, but she’ll get one anyway. One of the most
well-respected, well traveled, well-known disability
rights advocates in the world, literally, without exaggeration. If you wanted to look
at home and trace the arc of the American
disability rights movement, you would begin with Berkeley
and the independent living movement, the sit-ins
in San Francisco to enact the 504 regulations
to have them released, the Americans with
Disabilities Act, the Individuals with
Disabilities Education Act is reauthorized, and by
the way, as undersecretary for education the implementer
and the thinker around how to put in those regulations, and
how to get the Supreme Court’s decision in Raleigh, which said
basically any old education is fine. They actually mean, no, we want
to make sure that all kids have their full potential. And move forward
to the convention on the Rights of Persons
with Disabilities, where I was privileged
to sit-in the corner in the back with Judy and
Charlotte and Cheri and others, where I learned
so much about her. What you don’t have in
this booklet, is this is the leader, den mother,
icon, example, talkless talker for generations of disability
rights advocates and scholars. She has been the older
sister to most of us in learning about disability
rights advocacy, and the person who has set the
example for those of us who spend our lives
reading, writing, and advocating on behalf of
persons with disabilities. Judy is respected and
adored around the world, and I echo and include
Cheri and everyone else here to say you are
appreciated and loved. So thank you so much
for all that you do. We’ll please ask the
discussant and the keynote to come forward. [APPLAUSE] – Good morning. We decided to make this
into a conversation. – I thought it would be more
interesting than my just coming up and lecturing. Although, here we are at
Harvard, and how could I not want to lecture? And I said, I thought it’d
be more interesting if we could get into a discussion. And so Tom is the
person who’s going to be leading the
questions, and I think we’re going to be
speaking for about 30 minutes, and then opening this
up for discussion for about 15 minutes. So I really hope
that you’re thinking about comments you want to
make, questions you want to ask, so we can kick this off. Because the speakers for
the rest of the morning are all dynamic
and really exciting you’re going to learn a lot. And I would say, this really,
for me, is an opportunity to really dig deeper
into what does it really mean for Harvard
and universities around the United States
and around the world to really begin to get in
a more forthright way what it is that we’re talking about? And I just want to
add a little caveat. While the Americans
with Disabilities Act came about in 1990, section
504 of the Rehabilitation act came about in 1973. And let me just say that every
university in the United States community college, college,
has had the obligation to do what we’re talking
about today since 1973. And so I think we need to
put that into perspective, that this is not a
28-year-old requirement, it’s something that’s
much longer than that. – As a young person, when I
was in college one of the most memorable events I had. I worked in a volunteer
program for the Worcester– you’ve got to be from
Worcester to say Worcester– Massachusetts of arc. And I was working with a
group of parents who had kids who had multiple disabilities. And they were petitioning
the Worcester public schools for a class for
their kids in 1970. And the Worcester
public schools said, no. And for me that brought up
a whole issue of belonging. I thought all kids
went to school. And for me, it was
a great epiphany that actually not all kids went
to school as recently as 1970. So this issue of belonging rang
true to me as, at the time, being an emerging gay
identity person, closeted, but trying really
hard to get out. And so Judy and I have
discussed this quite– this whole fundamental
question, when you’re talking about
citizenship, of who belongs. Your thoughts on that Judy? – So Tom relates to
learning in the 1970s, that not all children
were in school, and I was a product of that. So I’m from Brooklyn, I lived
in Berkeley for about 18 years. But I have to say that if
I hadn’t lived in Brooklyn I wouldn’t be the
advocate I am today. And when I was born in 1947,
my parents were immigrants. And my mother took me to
school when I was five. But there were no
laws in the 1950s and the principal said
I was a fire hazard. And so was not allowed
to go to school. But told my mother not
to worry, because they would send a teacher
to a house, and they did for 2 and 1/2 hours a week. Not for kindergarten, for
the first, second, third and a half of the fourth grade. And then I was
granted a screening by the Board of
Education in New York. I had to go to a
school for a week, be observed, have an evaluation,
come before a committee that made the decision
as to whether or not you got to go to a
segregated, second rate, educational program. But I passed and I
got into this program. And one of the important
things about that was it was the first time
that I was ever meeting other disabled people. So while I had had my disability
since I was 18 months old, and I had polio so I
was in the hospital and I met people there. But I hadn’t really been
with a group of peers, other disabled individuals. I need to also say that
as a 9-year-old going into segregated classes
in a regular school, there were also children 16, 17,
and 18 years old in my class. So what I learned very
early on was, at that time in New York City– again no laws– the children
in the special Ed classes stayed there until they
were 21 years old, and then were expected to go to
sheltered workshops. It was my mother organizing
with other mothers that got the Board of
Education to make high schools accessible
in New York City so that I did, in
fact, not go back onto home instruction
for high school, but was able to go to school. I think one of the important
parts of the stories that Tom and I are saying right now,
is the fact that outside of families who had kids with
disabilities, who were working on getting children
into school, there was not a lot of
concern being expressed. The fact that disabled children
were not going to school was really not a major issue. And for those children
who were in school, there was not really
a lot of work going on to determine whether or not we
were getting the same education as children in the same school
that I finally got to go to. And I think that really speaks
to the low expectations. And the reason why I think
the issue of low expectations is really important. And a lot of work that Tom
and I did in the Clinton administration really was
and still is addressing the issue of low expectations. Because you’re not
able to really move to a higher level of discussion
if the majority of people in the world really have
not yet been convinced that we as disabled people
have the same rights as others. And I think one of the
other really pivotal issues about belonging is so many
disabled people do not identify as having a disability. And they don’t have identity
first images of themselves. We don’t see ourselves
as a community in the US and around the world
yet, as really being a political and dynamic force. A lot of work is going
on in that regard, but I think it’s fair to
say that one out of four people in the United
States have a disability, and one out of four of
those disabled people do not really come
forth with pride to talk about who we are
as disabled individuals. Many people have
invisible disabilities. The stigma around invisible
disability is very significant. And I think regardless of
what university I speak at, I hear the same stories
over and over again about the difficulty of feeling
a part of the universities. Yes, progress is
being made, statements that are being made by
faculty and others that really push people against the
wall and make it difficult for them to move forward. So I think the
issue of belonging. The issue of being able to
look more deeply at points like lack of education,
which around the world is still a major issue. And in the US, although
children are in school, there is still, as we
know, large percentages of disabled children who are not
getting the level of education they need, or not getting the
support they need and are still highly stigmatized. – One of the things that one
of my wonderful experiences teaching here at Harvard is
when I started, when I came here as a faculty member,
I was teaching courses on inclusive education. And I thought I’d be
teaching primarily to non disabled teachers,
which is the case still, about inclusive practice. But the wonderful thing that
I began to see in my classes where there were so many
students with disabilities who were in my classes. And when I was a student here
in the ’80s they weren’t here. And so one of the things that my
students who have disabilities, and some who don’t
have disabilities, who are very much
interested in addressing this intergenerational question
that this institute is going to be talking about,
of situating themselves in the world and how
do they make change? I use you as an
example all the time. Because one of the things
that you have done, Judy, and I’d like you to
speak a little bit about this, is that you’ve worked
on the outside. You took over a
federal building, remember secretary
Riley used to say that. My assistant secretary took
over a federal building and now she’s the Assistant
Secretary of Education. [APPLAUSE] You’ve been on the outside,
you’ve been on the inside. I’ve only been on the inside,
really, you know that. And I’d like your thoughts
about that, outside, inside, and what advice
you’d give younger people with disabilities about
how to situate themselves? – So I worked 20 years
in nonprofit world, and in 1993 when I went to work
for the Clinton administration, I had to go in with the real
conscious effort knowing that I was going into a world
of mainly non disabled people. And that was really something
that caused me a lot of thought about whether I really wanted
to go work, not only in a– I mean education was a
relatively small bureaucracy at that point, with almost
5,000 staff around the country. It’s unfortunately
smaller today. But what would that be like? Because I had worked
in disability rights organizations for 20 years. And it was a very important,
empowering experience for me to be able to be a
part of the development of the independent living
movement and the disability rights movements. First in New York, with
friends setting up a group called disabled in action,
then going out to California and being involved in
setting up the first center for independent
living in Berkeley. And then going on with
friends to set up the world Institute on Disability. And I’d been a number of
nonprofit boards and dealing with disability, non disability. I also was on a board at that
point for the over ’60s clinic. So from an intergenerational
perspective, I was involved in issues
around aging and aging and disability when
I was young myself. When I made the decision to
go work in the department, I knew that one of the reasons I
was going to take this position was because of my fervent
belief that government needed to be responsible to
the disability community. And in the case of the
Office of Special Education and rehabilitative
services, to parents who had children with disabilities. And as some of
you the room know, there’s been a lot of contention
between the parent community and the disability community. Some in the disability
community feeling that the role of parents
needs to be held in check. And one of my big beliefs has
been that the role of parents is really critical. It needs to be age
appropriate, et cetera. But parents are the
ones who are going to be giving the first
messages to their children. So if parents can be exposed
to strong, disabled individuals who have been able to fight
the battles and move forward, that’s a good role
model for parents. And so when I came
into the department and was lucky to find
Tom and recommend him to the secretary and the
president to be hired, and the Rehabilitation Services
Administration and the National Institute on Disability and
Rehabilitation Research. It was important for me to
assemble a team of advocates who were expert and
knowledgeable in their areas, but who were not afraid
of bucking the system. Because you know it’d be very
easy to come into government and really play the game,
and not really remember where we all came from, and why
we were coming into government. And I think we were very
privileged at that time that the Clinton administration
really hired strong advocates with disabilities who today’s
administration wouldn’t even blink an eye at, let alone
consider for a position. And quite frankly, the Bush
administration didn’t either. I think the Obama
administration carried forward what the Clinton administration
had been doing in many ways. But what I learned
early on was that when we were dealing with
the re-authorization, my close friends
on the outside were people from the disability
rights education and Defense Fund. And they were doing great
work in their education with disabled kids. And there was no
way that I was going to be involved in working
on the re-authorization without bringing in some of the
strongest advocates, including people like Julie Landau
who’s here in Massachusetts, and a very strong advocate
in the area of education with disabled kids. And we had meetings
and we had discussions. And one day, I got a call
from the Assistant Secretary of civil rights, Judith Winston. – Oh Yeah, Judith Winston. General counsel. – General counsel, sorry. Who said to me that
one of her staff was concerned because I
had told them to please call one of these lawyers
as we’re moving forward developing our proposals. Because I thought, OK, we
need to know what everybody thinks not just the lobbyists. And I said, don’t worry,
things will be fine. Everybody will learn to
work and play together. And at the end of the day,
that’s exactly what happened. So what do I tell young people? I tell, not necessarily
young people, what do I tell people
who are thinking about moving into government? I believe it’s really
important that when you move into government, you
have a strong set of principles of what you believe in. That you’re knowledgeable
and that you will learn in your job, but that
when you move into these jobs if you have a disability,
it is really important that you don’t forget that. Just like as we
advance diversity across the board for
gender, sexual orientation, race, socioeconomic issues,
we as disabled individuals who have cut across
all those groups need to remember that one
of the reasons we are coming to the table is because we need
to represent a group of people who in fact are currently
insignificantly represented. So we really have a
responsibility, in my view, to make sure that happens. And when you come to a
university like Harvard, where you’re exposed to so
much, the issue of disability being integrated, not just to
the students and faculty who themselves have disabilities,
but really into the curricula across the board. I mean in my view,
we should no longer be having discussions about
requirements since 1973 on accessibility. We should be digging
deep into how is disability supposed to be
integrated into the curricula? And we are not there yet. And that’s, for me, why this
meeting is so important. I want to expect
that the bathrooms on every floor in a building are
accessible, which they’re not. That a podium is accessible. Basic things for me
to feel like I belong, is that we are
really integrated, and these issues are
ones that are not just being discussed in a
separate silo on disability, that they are being
discussed across the board when looking at diversity. And I think Tom and
I did it really, we really worked hard on that
when we were at education. We went way beyond just
the mammoth amount of work that we had to do on
the re-authorization, but in the department
itself we worked really hard on getting disability
integrated across efforts. So we worked hard with the
bilingual education office, because the bilingual
education office, there are a lot
of disabled kids. And they were not
getting served. We worked with the
vocational education office. We got those staff
and others to begin to think about
how did disability fit into their portfolio. And when they were
monitoring what was going on, how were they looking at that? And how could we do
collaborative monitoring within the department. And we were going out
to states to address many of these issues. So my message is, disability
is not yet a part of diversity as it should be, that
is your obligation to make sure that
universities in fact live up to their obligations. And then it is your obligation,
in my view, when you leave here whatever job you’re getting, is
that if you have a disability or if you believe
that disability is a part of the
diversity agenda, you need to not let that
fall off to the side. You need to identify
friends and colleagues who you can go to and speak to like
I’ve done, to ask people am I a Martian? Which I had a good friend who
unfortunately passed away, but I would go
and speak with her when weird things would happen. And I’d say, Katie
am I a Martian? I kind of get back on the page
that I wasn’t and move forward. – One of the things
that I think, I mean I’m totally biased in
this assessment, but you’ve been the most
effective assistant secretary we’ve had period. And when I look at the outside,
inside question and the advice to younger people,
one of the things that I think contributed to your
success was on the human level, no pun intended. No, and I can
remember one anecdote that crystallized it for me. We were having a meeting with
the Republicans on the Hill, the Republicans were in charge. And all of a sudden, I see
Judy wheel over to the corner and your mother had just passed,
and one of the staffers mothers had just passed,
and the two of you were having a cry
over in the corner. A conservative Republican. And I said, you know, Judy
can get anything done. Because on the human level,
you related to people. It wasn’t just that this
was the right thing to do. It was you know,
how can you possibly oppose me because of who, you
know, because of the person you were? And I think people
don’t recognize the importance of that. I mean, I think I’m an
extrovert, for those of you who don’t know me. On the Myers-Briggs,
I’m way off the charts. And so I love to talk to people. I love to learn from people
and hear people’s stories. And when, I always
get emotional too. I was at a meeting
yesterday and there was a woman, a student
here, who was getting emotional about
something and I said, I get emotional all the time
so don’t worry about it. But I think stories
are very important. I think regardless of this
history you’re telling, people need to hear stories. They need to understand today
we’re discussing disability. And again, disability
cuts across race, socioeconomic status,
da da da da da da da. So we need to hear
people’s stories about good and bad things. People need to be
able to express the pain that they’re
feeling when not feeling like they belong. When asking for things
that should in fact not have to even be asked for,
but are not being given, and having to figure out
how do you move forward in asking those stories? Why were the hearings,
well, I guess stepping back to the Section 504. After that provision of the
Rehabilitation Act was passed, a gentleman named John
Wodash who some of you may know who worked in the
Department of Justice, first at health education and welfare. When 504 came out
it was a small piece of legislation, 40 some words. And nobody knew
what it was going to mean not to
allow discrimination for an entity that
was receiving money from the federal government. So they went around the
country and they held meetings and they talked to
disabled people. Justin Dart did
the same thing when the ADA was moving forward. He went around the
country to every state and had people
tell their stories. Because in the area
of discrimination, not a lot of people believed
that discrimination was pervasive in the United States. Maybe it happened here and
maybe it happened there, but you know, nobody
really meant it. Nobody really meant to
say you are a fire hazard and you couldn’t go to school. Nobody really meant
that you weren’t going to go to high school. Nobody really meant that you
weren’t going to get a job. Well that was all bullshit. But I mean, let’s
be real, maybe some of the issues around
discrimination and race and disability are different
because if you’re god fearing and no one is supposed
to do anything bad to a disabled person. So it wasn’t
intentional or whatever. But the reality is, we need
to be able to assert ourselves in a way which allows us
to give people permission to tell their stories
and to listen and to do more than just listen. So a lot of what every
one of the speakers today will be talking
about, or if you talk to them on the
side will tell you, is that people call
and ask questions. People want to talk to you. They want to tell their story. And if it’s something
great that’s happened they want to tell it. But if they’re having a problem,
they want you to listen. They want you to
help find a solution. They may have the solution. And in many cases, they do. And in fact, what they need
is your moral encouragement to enable them to go forward. It’s the am I a martian? No, you’re not, go fight
for what you believe in. I’ll be here for you to do that. We’ll be here. Why is it important that we
have a strong disability rights movement that’s not only
in the United States, but that’s an
international movement? It’s because our
stories are so the same. The unfortunate truth is,
our stories are so the same. They may be different
because in the United States we’ve had our laws longer
than in some other countries, but the level of
discrimination, segregation, feeling of being not a part
of a community, not belonging are across the board. It is important to say
that that is progressing. This convening would
not be happening today if it weren’t for the fact
that Michael and Cheri and Tom and other people here at Harvard
and students and the Radcliffe Institute didn’t recognize
that this was important. But listen to people’s stories. Allow people to feel that
they are a part of a movement. Encourage people
to feel that they are and part of a movement,
that their voices are important. And I mentioned briefly
earlier the issue of invisible disability,
because so many people have invisible disabilities,
whether it’s a learning disability
or ADD or diabetes or epilepsy or cancer
or a severe back problem or whatever the hundreds
of labels might be, those individuals need
to recognize that they are protected by the law. And that in fact, their
voices are important. And getting people with
invisible disabilities to disclose, to feel like it’s
safe to disclose and discuss it and to come together as a
group is very empowering. And it’s something that
I think produces success and I feel like I’m
one of the people, like many in this room,
who really encourage people to tell their stories. That we value their
stories, and we value them being able
to overcome adversity that they’re dealing with
through story and support. [APPLAUSE] – We didn’t
rehearse this one. Given the political
climate that exists today and the laws we
have on the books, you know, ADA, IDEA,
section 504, Rehab Act, where do you think legal
enforcement or lawsuits fits in in this particular time? – I think we’ve always had to
be concerned about litigation. By that, I mean
one of the concerns when 504 was first moving
into implementation and the ADA is, we
wanted, and still want to make sure that there is
an educated group of lawyers, and that disabled people
and family members also learn about the law because
it’s important that we are thoughtful and not frivolous. And I think I, like
everyone in this room, is deeply concerned about
appointments to the Supreme Court and about appointments to
the courts in general because of the conservative nature. And I don’t want to say
that being conservative means you’re anti disability
until proven otherwise, but I am very
concerned that we need to be more strategic than ever. And in order to be more
strategic than ever, it really does mean that
faculty and students need to really understand
disability rights laws, need to understand what
the laws do and don’t say, need to understand
case law, need to be able to look at
how to build forward so that we don’t lose things. And I think we should
also be at a point where there are stronger
voices through academia that understand these issues
and that are strongly working to ensure that when
we are dealing with filing complaints, mediation, going
to court, federal courts, state courts
whatever, that we are able to have some meaningful
discussions about what some of the challenges are
so that we can be educating not just those at
the universities, but at law
conferences, et cetera. Because I think disabilities,
as we’ve been saying, still much too absence of it,
discourse is really important. And looking at disability
as a civil rights issue, we need to be working across the
board with other civil rights communities in a more
in-depth meaningful way. And I think people
like Andy and Perata will be able to speak about
some of that later today, but I think it’s a
very important issue. When do we want to open this up? Do we want to open this up now ? We open this up now? I think there are two people
apparently have microphones. So questions, comments? – Judy, this
question is for you. My name is Gavin Chhabra. I am a person with
severe visual impairment. You mentioned a couple
of interesting points about the fact that low societal
expectations and prejudicial attitudes are much
more widespread, and the experiences of
people with disabilities worldwide are converged. So often, an antidote
to that, you also mentioned that you have to have
positive images and stories which are positive of people
fighting and overcoming the disability. How do you kind of
walk this tightrope that the expectation
levels don’t get blown out of proportion? For instance, you know, like
the media portrayal often is of this super crip
person who has a– who is quote, unquote this
inspirational [INAUDIBLE].. So how do we kind
of guide ourselves from setting the right
discourse if I may say so? And the reason why I ask this
is because in the case of India, which has one of the largest
population of persons with disabilities, just
recently in 2015 the government was talking about accessibility
rights based discourse on one hand, and
on the other hand it kind of labeled
persons with disabilities who were severely stigmatized
as devined bodied individuals. And the reason why
they said that they are devined bodied
individuals is the idea is to give them positive
connotation to disability. To say that they are much
better than regular humans. So how do we do not blow
it out of proportion and how do we humanize this
whole debate if I may say so? – I do you think we’re
much better than others. It’s a well-kept secret. Thank you very much
for your question. And let me say, that I feel it
is very important that people dream big. And so I don’t want to put a
lid on someone’s belief of what they could achieve because
they have a disability. So I think your
question for me really provokes a couple of
different areas of thinking. When I did start going to
classes with disabled kids, and then went to camps
with disabled kids, and in the future,
you’re going to see a film that’s going to come
out probably in 2019 or 2020 called Crip Camp. And when it comes out,
Harvard will a great place to come in and do a previewing. The reason I raise
this is because it was a segregated camp. The reason it existed
was because those of us with disabilities couldn’t
go to the regular camps. But what was very valuable about
the well run disabled camps– and in this case
camp Jeanette– was run by 1960s hippies who were
progressive, drug smoking guys and gals. None of whom had disabilities. But were in fact into
a free love approach. But it allowed us an
opportunity as disabled people to really begin to come
together and think in a way that we hadn’t been
able to before. I, like many other people,
have only one disabled person in the family, it was me. And my parents were
really fighting for me to be able to become
included in society, but they understood
discrimination. I mean they’re Jewish, they
experienced anti-Semitism, their families were
killed in the Holocaust. But disability is something
a little bit different. And so the ability
to come together with other disabled
people and really just to begin to talk
about how our lives were different than our
brothers and our sisters and our cousins
and our neighbors. How as we’re getting older we
couldn’t go across the street, we couldn’t get on a bus. We didn’t have technology
or Braille or sign language interpreters or
whatever it might be. We were not able to
begin to really think about becoming a part of the
quote, unquote, American dream. And so it was really
important for us to do what many
people considered beyond the realm of possibility. And so I want to encourage
people to think broadly. Not by themselves,
although everyone has to have their own personal
vision of what they want for their life, but
also to be able to work with other people who have
disabilities and others who’ve been a part of other movements
who’ve fought for equality and are continuing to
fight for equality. How we can learn
from each other. And at the same time, I think
it’s also very important that we address,
I don’t know, you know the issue of
super crip, I know we can have a very long
discussion about that. I think, Superman, before
Reeves acquired a disability, people loved Superman. When Supergirl or superwoman
or whatever she was called came forward, now Wonder
Woman, we love that. So why can’t a disabled
person be a Wonder Woman? I mean, I think that’s what
we’re not wanting to say, that all people,
disabled are not, are super anything,
because we’re not. But I want to make
sure that people really can believe that we can
excel, we can be super. The issue of religion, I
think, is very important. I think we need to
be doing a lot more with the religious communities. And I think we see
in the United States there is some more work
going on in that area and around the world. But I really think
it’s important. It’s important because we want
religious leaders to be looking at what the role of
religion in their countries can be playing in the
area of disability. That we are opening doors
so the disabled people can become a part of whatever
the religious community is offering. Not that we’re a
curse of or blessed by, but that we are part of. And that as religious
communities, we need to be putting
our hands forth to help ensure that all people
are able to make contributions. So I think, obviously, the
issue of being from the divine is not where we
want to be pursuing, but we need to be able
to enter into a discourse with the leaders who are putting
that forward to really allow people to understand this. I was in Algeria once and I
was at a wheelchair basketball game. And there was an
Imam in a wheelchair, and someone introduced us
and we started talking. And the media wanted to know
why was I speaking to him? Well I was talking
to him because he was a religious leader
in the community. He was also a basketball player. And he could play a
very important role. So reaching out into our
communities and learning more and getting them
to be advocates. To see us as members of the
community who can contribute. Not who only need
help, but who can make meaningful
contributions I think is a part of where
we need to go. Question? Comment? – Hello – Can you give me your name? – Yeah. Hello, good afternoon. My name is Claire
Burks Dresser and I don’t know if you remember me. We actually had a conversation
at Northern Arizona University a few years ago. – OK, great. – And you gave me
some advice on how to go into the
international community to advocate for
disability issues. And I’m happy to say
that these days I work in refugee resettlement
advocating for disability. So in that field I’m seeing
some resistance, some hesitancy, and talking about disability
for resettled refugees once they arrive to
the United States. There’s this closed
atmosphere where talking about disability, maybe
in their world experiences, maybe as someone who
has left a crisis, it has been safer not
to talk about disability or has been put on
the side as they’ve been escaping persecution. So these days I’d like to have
more conversation with families who are still struggling to
talk about disability now that they’re here in
the United States. Do you have some thoughts on
how I can have those opening conversations to folks who
might be a little resistant to disclose disability
or really invite it as a greater conversation? – So let me ask you to
answer that question. And I’m having to
jump in, but how would you like to pursue that? – Well I think,
for me, as someone who has a physical disability
but only growing up in the United States, the
trouble that I’ve faced so far is trying to connect to
a different experience across the globe. But the thing that
connects us is as you said, the challenges
that come with disability. But I think what I’d like to do
is create an atmosphere where they can talk freely and safely. Where universal design is
an expectation upon coming to the United States. But the issue that
I come across is because we talk about
disability more than we have in terms of inclusivity,
but it’s still a long way to go. There are still challenges
in creating spaces, even amongst people who
work in nonprofit to have those conversations. So I would like to
have a space where folks can talk about disability
when they come as refugees. But I’m still facing
the challenges where even the United States
staff might put it off to the side or it might not be
a priority because there are so many intersectional issues and
things that are not exclusively about disability, such
as refugee [INAUDIBLE].. – So the reason I asked
you to answer the question is because you experience
this on a day to day basis. And I think that’s
very important. And you are telling a story. And I think that’s important. And I really think
it’s important to share with the families that you’re
working with your experiences. And to allow people
to understand that there are opportunities
in the United States, but there are also challenges. And I think it’s
important to try to see which other organizations
in the communities, like centers for independent
living or other parent groups, or depending on the issues that
are going on with the families, that they’re also brought
in so that people, in fact, can expand their universe to be
able to also meet other refugee families who have
disabled people. And some organizations
around the United States are doing a better job
than others on this. But I think what’s
very important is you’ve put a finger on
a very critical issue. And that is that people who
are coming from other countries also may not have very
high expectations, may have no expectations
about what can happen here. And so I think it really
is important to help people learn about what
opportunities are here. And to also be a part
of the discussion that’s going on that disabled
refugees coming here are falling through the cracks. They’re not learning
about the systems that are out there for
them and identifying other disabled refugees who’ve
been in the United States for longer periods of time. And I’m happy to talk
with you about that. I’m sure there are other
people in the room also, but to give you
some names of people that you may want to speak to. But this is a very
important issue. And it’s not just in the
refugee area, you know, you can pick many
other subjects. So using your voice and your
knowledge I think is important. And being a driver
within your organization, within the refugee community
providers of services. And also looking at
opportunities where refugees may be coming together in
religious organizations, in schools, social
workers, really trying to give people
space and knowledge and knowing that you’re
there and that they can speak to you when they need to. If that’s possible, I think,
is also very important. And remember I think, in
my view, 100% of refugees have disabilities. They’ve been fleeing
their country, that get psychosocial disabilities,
they may not, in fact, even know it. And so I think there
are people like us who have more visible disabilities. But even those of us with
more visible disabilities also have other issues going on. So I think it needs to be a part
of the bigger discourse that’s going on around
refugee settlement. And I want to see you,
I can’t see you now, look forward to talking to you. Oh, there you are. I see your hand. OK. Congratulations on
what you’re doing. Over here. – Hi. My name is Joanne
Daniels Fiengold. I just want to put a
few things out there. Even though I’ve lived
in one for 16 years, I’m not in favor of senior
and disabled housing. I don’t like being
segregated that way. There are far too
many people where I grew up in New Jersey who
had survived the concentration camps. I don’t like the idea of
being marginalized that way. I want to speak to you to. Go out into the community, seek
out organizations that work with disabled people. I work at GBLS, Greater
Boston Legal Services. I volunteer with the children’s
Disabilities Project. And quite a few of the
parents who are refugees don’t want the
stigma of disability attached to their child,
even though the child needs services. And this is a big problem. But that’s one of the ways that
you can, that’s two of the ways that you can get
involved and bring people into what you’re doing. Again, some people
might recognize my last name Daniels Feingold. I was the first named
plaintiff in the T access case that was settled in 2006. Things are better,
but not perfect and we’re still working
on things at the T. I was involved from the time
we were in discovery on. You can find places
where you can fit. Where you can really,
really make a difference in the disability community. I fell into this. I was on the green
line and was asked, have you ever had
problems riding on the T? After I finished laughing,
the person who asked me that gave me his card,
and from then on, I was involved with
the T and disability and getting things better. It took quite a bit. – Thank you. Other questions? Comments? That’s it. Sorry, I’m told no more. – I hate to be the
bearer of bad news, but I think that
just for the sake of the schedule and
to keep things on time we’re going to wrap up this
portion of the conversation. I think I speak on
behalf of everyone in expressing our
thanks to Judy and Tom. [APPLAUSE]

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