Disability and Citizenship | Global Perspectives on Citizenship || Radcliffe Institute

Disability and Citizenship | Global Perspectives on Citizenship || Radcliffe Institute


[MUSIC PLAYING] – So welcome back, everyone. So for this next
portion of our program, we’re bringing together a
panel, an all-star panel focused on global perspectives
on citizenship. I think, particularly,
given the comments we’ve just heard
from Judy and Tom, that we recognize that
concepts around citizenship and community participation
really vary significantly, dependent on your context. And that can, of course,
bring in multiple factors– things like locale, what
world region you’re from, your gender, your age, your
socioeconomic status, and so on. So we take this broad
array of perspectives, and then we add one more
that’s critically important. And that’s the focus of
our discussion today– and one that cross-cuts
all of those. And that is the
experience of being a person with a disability. And from the initial cadre of
disability and civil rights advocates up through
today’s ADA Generation, it’s clear that concepts
around citizenship today, and what that means,
and how you strive for reaching those rights,
and advocate for your needs, it looks different now than
it did 30 or 40 years ago. And then you layer
in contextual factors related to global citizenship,
and that brings another layer. So this panel is
really to focus on all of those
multidimensional aspects of what it means to be a
citizen and to fully participate in your community as a person
with a disability here, now, in 2018, and
how we got here. So I’m going to keep my
intros brief because you want to hear from these panelists. And the bios are
in your program, as was mentioned earlier. So please take a moment
to look at those. But briefly, we’re
going to be starting on this side of the
table and moving down. We’ll first hear
from Maria Town. Welcome, Maria. Maria is the director of the
Mayor’s Office for People With Disabilities for
the City of Houston, where she advocates for the
rights and needs of citizens with disabilities related
to everything from hurricane relief, to immigration,
to incarceration– a number of topics,
particularly at the local level. But I think everyone who knows
Maria knows that she’s a rising star in the field and already
has a great depth of leadership on these topics. And she was a former
senior associate director in the Obama White House
Office of Public Engagement, so also with some federal
experience, as well. Next to Maria is
Ari Ne’eman, who’s a well-known leader in
the self-advocacy movement and currently serves as CEO
of MySupport.com, something that’s definitely worth checking
out when you have a moment. Ari is involved in
numerous consulting roles across many sectors related
to disability policy and is really seen as an
expert in this regard, particularly working with groups
such as the American Civil Liberties Union. His voice is really out there. I actually just read
your blog post, Ari, from the Health Affairs
Blog a couple of days ago. So really cross-cutting
issues of disability policy across multiple sectors and with
a real wealth of experience. Charlotte McClain-Nhlapo,
far to my left, is a long-term friend and
a global disability advisor to the World Bank
Group, where she focuses on disability,
inclusive development, and also was previously
appointed by President Obama to lead USAID’s work on
disability, including how you think about developing
policies in various regions around the world and
country strategies at the local level for
program implementation. Charlotte just arrived
here to Boston from Rome, as is usually the case. I feel like Charlotte’s always
coming in from somewhere fabulous around the world. And so we really appreciate
her being here despite lag and taking the
effort to join us. So really thrilled to
get this session started. What we’re going to do is hear
from each of our panelists individually for
about 15 minutes, just to hear their
overall thoughts and how they think about
citizenship from their lens. After that, we’ll have
a moderated discussion amongst ourselves, and then
we’ll open it up for Q&A. So without further ado, I’ll
pass along to you, Maria. – Thank you, Cheri. [APPLAUSE] So I thought to kick
my comments off, I would reference
a Harvard alumn. In his farewell address,
President Barack Obama said, “It falls to
each of us to be those anxious, jealous
guardians of our democracy. Embrace the joyous task we have
been given to continually try to improve this
great nation of ours because for all of our
outward differences, we, in fact, share
the same proud type– the most important office
in a democracy, citizen. Citizen. So you see, that’s what
our democracy demands. It needs you, not just
when there’s an election, not just when you can serve
your own narrow interests, but over the full
span of a lifetime. If you’re tired of arguing
with strangers on the internet, try talking to one of
them in real life.” And when he left
office, he said, “And now I’m going to take
on my most important title, more important than
president, more important than prime
minister– citizen.” And I think that that’s
an interesting quote to sort of start this
conversation because when we talk about citizenship,
I think that there’s an assumption embedded
in that, which is the assumption of
active citizenship. When we talk about
people being citizens, we’re assuming that there’s some
sort of activity and production connected to what
they are doing, because they are an
active participant in our government’s or many
governments’ social contracts. And that assumption of
activity and production has been used to
discriminate against people with disabilities from
the very beginning because, as Judy mentioned,
we have been marked as people who just
have needs, as people who are solely consumers. And when you contextualize it in
the American code of Protestant work ethic moment, the idea that
people with disabilities cannot contribute and cannot be
productive really endangers our own ability to engage
in active citizenship. And it’s interesting. If you look at photos
from many of the protests in the initial disability
civil rights movement, you see signs that say, we
want to be taxpayers, too. And we laugh at that. And we can think that
maybe the only people in the world who
want to be taxpayers are people with disabilities. So I’m giving you a kind of
broad, historical perspective because, really, when
we talk about disability and citizenship
together, in many ways, disability status and identity
has been seen as antithetical to citizenship. And so now I want to talk
about some more specific issues that I’m dealing
with at a local level that I think highlight this. One, and they’re all current– I find it interesting
that every Harvard student that I’ve met who has been
disabled has been an immigrant. Now, mind you,
I’ve only met four. That’s a very limited sample. [LAUGHTER] But all of them, every single
one of them, have been– had a disability. And most of them share
the same story, which is that, I had a disability. And my family decided
to move to America because they knew that I would
have more rights here, and be able to access education,
and have a chance of getting a job because of things
like the Rehabilitation Act and the Americans
with Disabilities Act. And so when I think
about immigration, disability is a
huge part of that. There are people who come
to the United States, people with disabilities,
because they have a better chance of succeeding here than
they do in their home country. And in Houston, one
in four Houstonians was not born in
the United States. I would say that, in many ways,
we are a city of immigrants. We have the largest
refugee population in the United States. And so currently, the
Trump administration is considering a rule called
the Public Charge Rule, which would prevent immigrants
who receive public supports, like the Supplemental Nutrition
Assistance Program or housing vouchers, from attaining
visas, green cards, and full citizenship. So what is that
actually an attack on? That’s an attack
on poor immigrants, and that’s an attack
on disabled immigrants. And in the City of
Houston, we stand, one, firmly against
this proposed rule and recognize not only how it
will impact those individuals who have been so brave to leave
their home and to come here, but our whole– our
citizenry as a whole. And so I want to give you some
numbers and some examples. What we found for other bills– whether they’re
at the state level or at the federal
level– for bills that target
immigrants, what we see is individuals not seeking
city services that they are entitled to,
like vaccinations, like TB vaccinations. That puts all of us
at a health risk. By the way, vaccinate
your children, please. And we also– there was a
bill at the Texas state level called SB 4, which
targeted immigrants. And what we found is
that there were 70% fewer reports of domestic
violence in the Latinx community in Houston. Does that mean that
domestic violence was happening at a lesser rate? Absolutely not. It means that people
were scared to report. It means that people
were getting hurt. And so now, if you
think that people maybe won’t try to access
things like SNAP or WIC, it means that children won’t get
access to the food they need. That’s putting our
whole citizenry at risk. And so hearkening to
what Judy was saying, until we can get to the
point where we realize that social justice movements
connected to citizenship need to embrace disability– not just for individuals, but
also so our whole democracy can continue to sustain itself– we’re going to continue
having discussions like this. There’s also an
economic piece to this. We note that immigrants in
Houston generate $14.75 million in economic activity. Preventing them from
accessing public programs that support economic stability will
destabilize our whole economy. Again, it will infringe
upon everyone’s ability to be an active citizen. Another very recent and
wonderful piece of news is that felons in
Florida now can vote. [APPLAUSE] Exactly. So I think it was Referendum
Number 4 on their ballot– restore voting rights
to people who– felons who had
served their time. Florida is not the
only state to do this. We do this in Texas. What that means is that one
million people can now vote. That is 9.2% of Florida’s
voting-age population. Mhm. And when we look at criminal
justice, at least 80% of people in the
criminal justice system are people with disabilities. So the ballot
initiative in Florida– it’s a race issue. It’s a gender issue. It’s a disability issue. It’s an enfranchisement issue. And it’s a citizenship issue. And all of those are connected. So thinking about
things that we can do around enhancing
people’s ability to be active citizens in
the context of disability, we need more ballot
initiatives like Referendum 4. I don’t know– how much
time do I have left? OK, great. Something that I’ve given
a lot of thought to, and that I think everyone on
this panel could speak to, is people with disabilities’
rights to privacy. And privacy, I think,
today is on everyone’s mind in new ways because of hacks
at Facebook and Google– working for the federal
government at the Office of Personnel Management. So I think everyone has a
greater sense of how tentative their privacy really is. People with
disabilities, I think, often just abandon
their sense of privacy because, so often, the programs
that we are forced to rely on in order to survive
require us to describe, in great detail,
aspects of our lives that are often our
most private moments. And so when we think
about things like a right to privacy, for people
with disabilities, that’s not the most
resonant concept. However, you would
think that for folks who maybe don’t get to access as
much privacy as everybody else, we wouldn’t need to tell
our stories because everyone else would already know them. The opposite is true. Well, doctors need to know
measurements of our bodies and the regularity of
our bowel movements. When state agencies need to
know exactly how much money we are making at every
point in the day, when our communities establish
working groups to check up on us because they want to
make sure we’re kept safe– you know, and it makes
it harder to have an intimate night at home– you would think that people
would get our stories. But instead, when we
try to tell our stories, to actually articulate ourselves
and maybe expose our truths, people don’t want to hear that. And so what does being
a private citizen look like as a person
with a disability? Working in natural
disasters and emergencies, as I’ve done in
Houston, there are a lot of people who talk
about registries for people with disabilities, in
order to make sure we can get rescued and be safe. And I think registries
are very ineffective. I think that they are often
a waste of taxpayer dollars. And I don’t think that
people with disabilities are inclined to use
them, because if you’re a person with a disability,
more likely than not, you already exist
in many registries all over the country. If someone were able to use
data modeling and pulling information from
Medicaid or from SNAP, you could absolutely
pinpoint where most people with disabilities
exist in the United States right now. So again, what does it mean
to be a private citizen for a person with a disability? Finally– this is a
little bit different– when we think, again,
about the historic, people with disabilities
are only consumers. They’re not producers,
therefore citizenship is tough. Within the disability
community, I think we actually have a group
of super citizens, a group of people who have been very
impactful to the disability rights movement. And those are veterans. These are individuals
who have chosen– although we can unpack that– to potentially sacrifice
themselves for their country. And when they become wounded,
whether in the line of service or not, they become a
person with a disability. And it is the government’s
responsibility to care for them
because they have been such an active citizen. And so the connection of
veterans with disabilities to all these services, to the
disability rights movement, is very different. And I think that their
understanding of citizenship and their role in it
is also very different. And so for me, it’s interesting
to consider these opposite ends of the spectrum. Let’s say people
with disabilities, like myself, who were
born with disabilities– who many would assume would be
on benefits for my whole life, and that is not
necessarily a bad thing. And on the opposite end, a very
young, virile man who became injured in the line
of duty, and therefore is valorized for his
active citizenship. So just think on that. And I think if we
could figure out how to get a better conversation
going between those two groups, among many others, we can
make progress on this issue. Thank you very much. [APPLAUSE] – All right, yes. Thank you, Maria. I think a number of
really thoughtful topics. Everyone, let those roll
around a little bit, and maybe we can bring
them into the Q&A. And certainly, we’ll bring some
of those into our discussion, as well. Ari, we’d love to hear from you. Thank you. – Thank you all very
much for having me here. One of the things that struck
me about this morning’s keynote was a comment Judy
made about how people say those who discriminate
against people with disabilities
don’t really mean it. And there’s something very
powerful in naming that, not least because the biggest
challenge the disability rights movement has is helping the
public understand that we are, in fact, a political issue. Disability is political. And in some ways,
one of the things that’s often been leveraged
as the disability community’s greatest asset– the perception that
nobody wants to stand against the interests
of disabled people in a public way– is also, really, our
greatest weakness. Because if you don’t
acknowledge disability policy as a political issue,
as an area that is rife with
potential conflict– and those of us who work in
the world of disability policy know that conflict
can be very intense. But if you don’t
acknowledge that, then we end up with
this impression that, really,
there are no sides. Everyone is acting with
the best of intentions. And people who
work on disability are engaged in some
humanitarian rather than a political project. Judy talked about
the risks of that in the context of
overt discrimination. And I want to talk a
little bit about that in the context of some
of the conflicts that emerge around disability
service provision. Over the course of the last 50– at this point, 60 years– I’ve been talking about
this for about a decade. So over the course of
the last 60 years or so, we’ve seen a tremendous
amount of change in the disability
service provision system. From 1960 to the present,
over 200 state institutions for people with developmental
disabilities were closed, and their residents
supported to live with greater dignity,
autonomy, and independence in the community. If you look at 1977,
data we have from 1977– in 1977, the average person
with a developmental disability living outside a
family home was living in a facility with
23 of their nearest and dearest perfect strangers
they happened to share a disability diagnosis with. Today, the average residential
setting size is two. There has been a
tremendous shift in the way that disability
services are delivered, are approached, and funded. And by and large,
that shift has been towards greater integration,
greater autonomy, and greater choice for people
with disabilities. Now, as we start to move
into new kinds of shifts in the disability
service system– and some of you here are aware
of some of the controversies that disability
services face today, such as the transition away
from sheltered workshops towards community-integrated
employment– what some folks
call second-order deinstitutionalization–
the shift away from smaller congregate settings like larger
group homes to individualized, in-home services like
supported community living or shared-living Hosla models. All of that is running
into controversy. And it’s very important
for us to understand that all of the prior
transitions that took place were also intensely
controversial. Some of you know I’m in
the process of writing a book on the history of the
American disability experience, from the Civil War
to the present day. And one of the things that
really jumps out at you is, in every generation,
going back to Union veterans, disabled Union veterans
after the Civil War, we’ve had these same conflicts
over what is the best way to support, care for– however we conceptualize it– assist people with disabilities. More recently, in the 1980s– 1970s, ’80s, and ’90s,
disability rights advocates fought, in pretty much
every state capital across the country,
on the question of deinstitutionalization. And the tricky thing
about disability politics is that it doesn’t
always match up to the simple red-blue
divides that we’re used to in our country. Some of you may know that one
of the most intense opponents of deinstitutionalization and
community living for people with disabilities in
the 1970s and ’80s were public sector
employee unions who represented workers
and institutions that didn’t want to lose their job. In 1975, the American
Federation of State, County, and Municipal Employees
issued a pamphlet entitled Out of Their Beds and Into
the Streets, working to try and scare family
members of people with developmental disabilities
that, if institutions were closed, that folks would be
left without access to support. That’s, by and large,
not what happened. We did see that to some degree
in the mental health context because the community service
system was not funded there. But in the DD context,
we’ve generally seen a very positive
deinstitutionalization experience. But at the time,
we saw controversy. So today, as we look at
new kinds of controversy, it’s important to have
that historical context. Those of you who work
in Medicaid policy may be familiar with
something called the Home and Community-Based
Settings Rule. In 2014, the Obama
administration issued a rule that was designed
to speak to the fact that, often, what we call community
living doesn’t actually afford people the kinds of
rights and opportunities that we usually
consider characteristic of life outside an institution. And that in the initial waves
of deinstitutionalization, sometimes what we ended
up doing was taking people from a large building
where someone else got to decide every
aspect of their life and what they did for
every minute of the day, and put them in a small
building where someone else got to decide every
aspect of their life and what they did for
every minute of the day. And well, we do have a
fair amount of research that shows that folks
are more likely to have choice and autonomy
in smaller settings than in larger
congregate settings. Community also has to be
about the kinds of rights and opportunities people have. And so this rule, the Home and
Community-Based Settings Rule, which every state has
until 2022 to comply with– it was initially
going to be 2019. The current administration
extended it to some degree– is a multi-dimensional
definition of community. It doesn’t just talk about size,
although size is one factor. It also talks about the kinds
of rights that people have. Do people have the right to have
visitors in their own homes? Do people have the right to
decide when they go to bed? Do people have the right
to decide when they eat? Do people have the right
to decide where they live? These basic concepts of choice– which most people, with
and without disabilities, who aren’t in residential
service provision have the opportunity
to make all the time– are really core to the
question of whether or not a setting
should be considered community or
institutional in nature. Generally speaking,
if you’re 40 years old and you have a bedtime,
you’re institutionalized, even if we’re calling
it something else. And the response and the
conflict that emerges here is really oriented
around this tension between autonomy and safety. And this really gets into one
of the core questions of what it means to be considered– I know our theme is citizenship. I don’t want to limit it to
citizens– but to be considered a person, in the context of
our political, and social, and especially human
services culture, which is, to what extent do we
allow people, what disability rights advocates have long
called, the dignity of risk? Because while there are certain
things that people do need support to avoid, where
there are life and death– immediate life and
death consequences– in fact, most of us make
decisions about our lives that are oriented around
more than just basic safety. How many of you have
ever had something to eat that you later regretted? How many of you
have ever been in a romantic or
sexual relationship that you’ve later regretted? How many of you have
ever gone somewhere that you’ve later regretted? You think to yourself, why
did I waste my day like this? How many of you have ever
done something dangerous? Do you think your
life would be better if you didn’t have
the opportunity to make those choices? And so these are really one
of the core things that’s at stake when we talk about the
future of disability policy. Are we going to be comfortable
with a controversial, conflict, full, politicized
disability policy conversation that has space
for people to make choices that involve risk? Or are we going to
go back to this idea that there are no sides and
there are no politics when it comes to disability? We know that’s not true. But it’s important for us
to really send a message to the public that
that’s not true. I want to close by talking
about how this plays out in academia, because
I know many of you here have a very
significant role to play in fields that
are far beyond just disability studies
or disability policy. When we talk about political
science and economics, scholars have come up with a
wide variety of really valuable methodological tools to
help us understand conflict, and conflict between
different values and different stakeholders
in our society. And one of the challenges
that we run into is that those tools
aren’t always applied in the context of disability. Some of you who work
in political science are familiar with the problem
of one person, one vote, one time, which is a concept that
comes up in countries that are embarking on the
transition to democracy, but while they may
have elections, have not built
sufficiently strong norms around political
institutions to be assured that free and
fair elections will happen more than once. And there is the risk that
elections will take place. And then the winners will
prevent further choices from being made, if the
polity changes its mind. And here we have a
pretty basic recognition that, in the
context of politics, people need to have the right
to choose more than once. And similarly, when we talk
about disability service provision, often,
choice is conceptualized in this very, very narrow way. You have the right to choose
between group home A, group home B, and an institution. You have the right to choose
where you’re going to live. But we don’t necessarily talk
about the kinds of choices you should have
the right to make after you make that decision. In a very real way, we
run into this problem of one person, one
choice, one time a lot when we discuss residential
and employment service provision for people with
significant disabilities because there’s a great
deal of focus that goes into that initial choice,
but not a great deal of focus into the kinds of choices that
occur every day around when to eat, when to wake up,
who to spend time with, and the ability to revise
our earlier choices. So I want to close by saying
that people with disabilities are fighting, in
a very real sense, for some of the things that
we consider characteristic of basic personhood
in our society. And the more we can
acknowledge that fight, and the more we can orient our
discussions around disability to the concrete and specific
areas of conflict that drive disability
policy forward and have over the course of many,
many decades at this point, the more we can have
a real conversation to ensure that the
rights of citizenship, but also the rights
of personhood, are afforded to all. Thank you very much. [APPLAUSE] – Thank you. Thank you very much, Ari. Really thought provoking, and
I appreciate those comments. And we’ll now end– I think we’ll move right
into Charlotte’s comments so that we can then get started
and launch into the discussion. So Charlotte, the floor is open. – Thank you very much, Cheri. And thank you very much for the
invitation to be here today. I wanted to start off by
just saying that, today, across the globe,
we’re seeing a surge around the universal recognition
of disability rights. And it’s very important
for us to recognize that this demand is
predicated on and fueled by decades of
struggle and results of the work of the global
disability movement that Judy talked about. This movement has
been a movement that has fought relentlessly
for rights, for recognition, for dignity, and
very importantly, for self-representation. The outcome of this
struggle has been the construction of a global
architecture around disability. In that regard, we now
have the Convention on the Rights of Persons
with Disabilities, which has been ratified
by 178 countries. Linked to that or
related to that, we also have the Sustainable
Development Goals and the 2030 Agenda, which now frames
development programming across the world. And so again, very important in
terms of thinking about where disability is globally. It’s important for us to note
that both of these frameworks have been replicated at
regional level across the world. And in their
replication, what we see is that they’re nuanced based
on regional characteristics. And they’re seen as part of
indigenization of the rights in that particular
part of the world. As we speak, the
African Union is about to commence the
process of approving an African Protocol for
the Rights of Persons With Disabilities. The World Disability
Report, a World Bank and WHO collaboration, estimates
that persons with disabilities make up at least 15% of
the world’s population, making us the world’s
largest minority. Our collective lived
experience and mobilization at local level and country
level has been directly, and I repeat, directly
responsible for the rapid entry into force of the Convention
on the Rights of Persons with Disabilities. And then in turn, this
convention and the engagement of persons with
disabilities influence the intergovernmental
negotiations around the Sustainable
Development Goals, with the resultant
effect of making them responsive to
disability and firmly recognizing disability as part
of the development agenda. Now, this would not
have happened had it not been for the global
disability movement. Increasingly, persons with
disabilities across the globe have been shaping social
and economic innovations, challenging social
norms and values, and breaking new ground. Similarly, it is
pretty clear to me that the desire for
recognition of one’s own value and that of a community has
driven the political engagement of persons with disabilities,
again, across the globe. Today, across the world,
we have countless numbers of parliamentarians with
disabilities in Africa, in Asia, in Latin America. In Ecuador, we have
President Lenin Moreno, a president with a disability. In Argentina, we have a vice
president, Marta Gabriela Michetti– a woman with a
visible disability. And of course, we have our own
Tammy Duckworth in the Senate. But we need more. And it’s possible. We need more, and it’s possible. And I’ll tell you why
I think it’s possible. It’s possible because we
have, ever more than before, a robust and engaged base
of persons with disabilities working at the community level
to galvanize and socialize our rights. It’s also important
for us to recognize that, for the first time, these
organizations, these groups, these people are connected
via social media– connected as never before. Persons with disabilities
are increasingly influencing the course
of their communities and their countries. For example, based
out of Nairobi, Kenya, a group of young, African
youth with disabilities have established a
network using social media to share their experience and
stand up for disability rights. They now have a platform
for their shared beliefs, as citizens with
rights and dignity. This is very exciting. At the same time, we cannot
ignore the fact that this population continues to
face many, many obstacles. And these range from
stigma, discrimination, marginalization,
the lack of access to services, to opportunities,
and very importantly, to voice in decision making. If we accept that the
hallmark of citizenship is the intrinsic worth, and
the value of all people, and a concept that
continues to evolve, then we also need to be
mindful of the barriers that we experience. We also need to be
mindful of the fact that our own sense of
worth, as Judy pointed out, is not sufficient,
particularly where we live in situations
and communities where the societal norms
and practices do not recognize your worth. So you might think you have
all the worth in the world. But if other people
and the community doesn’t see your value,
doesn’t see your worth, doesn’t recognize
your agency, then you’re in a very
difficult situation. I wanted to just quickly talk
about the importance of higher education because,
globally, students with disabilities
in higher education remain underrepresented. We’re seeing some increases
in the OECD countries. But this is, by far, not enough. We know that on the
employment front, we also see a lag in terms
of the employment of persons with disabilities. The International
Labor Organization estimates that 386 million
people of working age have some kind of a disability,
and that in some places, in some countries in the
world, the unemployment rate for persons with
disabilities is as high as 80%. This exclusion of persons with
disabilities from education, from employment
opportunities, as we know, is often compounded by the
social disadvantage already experienced by persons
with disabilities. And so what does this
mean in real terms? What it means, for me, is
that too many young people with disabilities
are not in education, are not in employment. And as a category,
as a group of people, they will be most affected
by economic exclusion and, linked to that,
multidimensional poverty. We, therefore,
need to ensure that their socioeconomic integration
is put in place by tailored policies and programs. We need to see more robust
efforts in higher education and really begin
to systematically, and in a system-wide way,
address the lag that we see. We also need to
make institutions of higher learning more
reflective of our demographics and of our diversity
as a society. But I also just want
to pick up on a point, and that is why we
have seen, globally, an advancement in
terms of disability, within the global
disability movement. We’re also having to
contend increasingly with the politics of
fear and populism. And this is happening in far
too many parts of the world. In my view, this movement,
this fear-based politics, seeks to redefine people
as narrowly identified– identifying the in
group, and in so doing, really excludes large
parts of the population as a whole and
negates those of us who have intersecting
identities. I think this is particularly
disquieting for persons with disabilities because,
as people with disabilities, we all have
intersecting identities. These identities
could be gender. They could be race. They could be
sexual orientation. They could be refugee status. They could be age, and so on. And so we cannot afford
to valorize othering. Instead, we have to build
a common narrative that is underpinned by respect,
non-discrimination, solidarity, participation, and voice. And if we do this, it’ll
enable us, as a group, to flourish, to
belong, to recognize the struggles of those
before us, and to thrive. If we fail to do
this, there is a risk that the gains that we have made
to date will be clawed back. They’ll be diluted. They will be erased. There is also a risk that
we will be made invisible. And there’s also the
risk of us unwittingly assuming new forms of
oppression and suppression. This is particularly
relevant as we move into the future of work,
to which scientists have already started to warn us that rapid
strides in the development of artificial
intelligence and robotics could threaten the prospects
of mass employment. And my question is,
what does that mean for persons with disabilities? And so I contend that
we have no choice but to continue bold
and ambitious activism, activism that ensures that
the aspirations of persons with disabilities are
demanded and realized through active citizenship. And we constantly need
to ask the question, what does this mean for
persons with disabilities? We need to rewrite the
narrative of active citizenship and civil participation
to include persons with disabilities,
not as the exception, but as the rule. In shaping this narrative,
we cannot and should not lose sight of the need to address
the existing barriers that still exclude us. We need to challenge these
barriers like Maria Alejandra Villanueva did. Maria is a young woman with
Down Syndrome who lives in Peru. And she was able to challenge
a discriminatory government policy and, in so doing,
nullified the policy that excluded people with
certain mental and intellectual disabilities from
the electoral rolls. We need more Marias. We need to be
seated at the table to construct dialogue
between the disability movement, public institutions. We need to build alliances
with broader civil society. We need to be part of
political organizations. And of course, we need
to be visible and active in the private sector if
we’re essential– if we are to move the discourse
from inclusion to empowerment. And I want to repeat that
because I think we really need to think about moving the
discourse around disability from inclusion to empowerment. We know that facilitating
disability inclusion enables the mobilization
of a new generation. But we also need to see more
young people with disabilities as economic and social resources
who can, as citizens, directly contribute to sustaining the
stability and economic growth of our country. However, we cannot
do this alone. Using the capabilities approach,
the work of Sen and Nussbaum, we have advanced the
conceptualization of disability, but
we need more of that. The work that my dear friends
Michael and Cheri lead is well-respected globally
and highly sought after. We need more Cheris. We need more Michaels. And so allow me, Chair,
to use my last minute to invite academia to partner
with us to better define the discourse around
disability and citizenship, on issues around how we
measure participation. How do we enhance participation? There is a lot to do, and
I hope this conference is the beginning of this journey. So let me just close
with an African proverb that I think sums up my
remarks and, in many ways, says it in a lot
more eloquent way. And it says, “If you want
to go fast, go alone. But if you want to
go far, go together.” [APPLAUSE] – OK. Thank you very much, Charlotte. So I’m going to kick off
with a couple of questions for the panel that I think will
touch upon the points brought up and maybe bring up a
few new points, as well. So if I could, Maria, I’m going
to tap you on the shoulder first since I’m sitting
right next to you. – OK. – And I think it’s really
interesting to think about this cross-generational perspective. In your experience now
with the City of Houston, but also working with Public
Engagement with the Obama White House, it seemed like you were
really able to bring together a community of young voices
of people with disabilities. And as we think about
this ADA Generation, obviously, there’s a very
empower– it’s very empowered lens. But also, conversely, do you
think there’s any risk there? Do you think that a
younger generation is at risk of forgetting
the past in any way and all the work that’s been done? Or how are you seeing
people respond to that? – I don’t think so. I actually think that the
vast majority of youth with disabilities don’t
have access to the past, so they don’t have
a way to forget it. There is still an enormous lack
of recognition and awareness of disability history. And that’s everything from
a history of the disability rights movement,
to knowing that one of the signers of the
Declaration of Independence was a person with a disability,
to recognizing that Harriet Tubman was a disabled woman. And I also think that many
young people with disabilities do not know and
don’t have a chance to learn what their rights are. And I’m going to
probably, a little bit, mess up a saying from the
self-advocacy movement, which is essentially that we invest
so much time, and energy, and money in getting our
children to talk only to tell them to shut up. And I think that for many youth
with disabilities growing up today, at least for myself– because we have access to things
like mainstream education, we are– the primary
message that we receive about our disability is to
pass, be as normal and as non-disabled as possible. And that is extremely toxic,
and it’s extremely dangerous. And so I think that once
youth with disabilities are able to learn about the
past and learn about the fights, it is actually motivation
to get more engaged. I also think youth with
disabilities growing up now, like every young
person in the country, is seeing how easily our
rights can be threatened, and the importance of that
vigilance that President Obama talked about. I also think, too, many young
people with disabilities are having to learn how to
attack much more subtle, but none the less, dangerous
forms of discrimination. So for example, young
people with disabilities are growing up with
the expectation that they will have a job. They prepare their resume. They put on their suits. They get an interview. They get to the interview
and are ultimately denied the job
because they’re told, you’re just not the right fit. You can’t take, you’re
just not the right fit, and sue that employer for
disability discrimination. Even though embedded in,
you’re just not the right fit, is, you look different. That scares me, and I don’t
know if I can work with you. And so I think that
the tactics that youth will have to use to
really dig into things like that, those subtle– subtle comments connected
to much more dangerous forms of discrimination are going to
be different than generations previous because they were
attacking very explicit, tangible forms of bias. So– – Yeah. It does look a
little different now. But I think I’ve experienced
many of the same things from the standpoint of– I think that I know,
personally, as I approached a career in medicine,
for example, that probably a
lot of my success– particularly early on, when I
didn’t have a lot of mentors, myself, to look
at– was the tactics of passing, of keeping
up, and doing the job, and making it work in
whatever way would get it done at the end of the day,
but not necessarily doing that with a positive
identity of disability or bringing that to
the table, as well. Charlotte, on a
similar vein, you talked a little bit about
mobilization of younger generations in Africa. Can you talk a little
bit more about– as we are living in a world with
so much more interconnectedness with regards to things
like social media and other forms of
reaching across borders, do you see advocacy
happen differently in places where people
may not have previously been able to talk to
each other as easily, and particularly those younger
generations who are coming into it with that lens? – So I mean, I definitely see
a lot more use of social media. But I think we also need to just
acknowledge our own privilege because in a lot of
places where I work, just getting onto the internet
is very difficult. It costs a lot when you can. And so we need to
be mindful of that. But I do think that there
are groups– as I mentioned, the group that works out of
Nairobi that works TransAfrica, and they’re really good. They’re really good about
sharing positive stories, about sharing new laws
that are coming up. And they are very, very engaged. Now, I think what– the way that group
was established was that it got some funding
from the Open Society Foundation, which is great. But those type of things should
be happening organically. My greatest fear
is, what happens when the funding runs dry? So it’s really important
for us to recognize these types of
initiatives, but find ways to make them indigenous
to Nairobi, to Lagos, or wherever it is. And so, yeah. I mean, I think it’s happening,
but it could happen a lot more. – Yeah, exactly. And Ari, I wanted to ask
you a little bit about– you know, in your work across
policy, and so many of the things that
you said resonated, I know, personally
with me, with regards to having the
choice to take risks and to be able to make that
decision independently. Have you seen– as we enter into
this current political climate and with a lot of the
challenges that we’re in, do you see people from
within the disability community becoming more engaged,
or as the challenges mount, more disenfranchised, or both? I mean, I think some
people get fired up and want to be
even more involved. And other people just
think it’s just too much. And the barriers are
so high that they tend to pull back a little bit. Have you seen any major
trends in that way? – So of course, the answer
that I’d like to give, and the answer
that we’re supposed to give in moments like this,
is that the disability rights movement is united as one
in this overwhelming wave of passion and is
voting as a bloc. And the tragic thing is
that it’s not really true. In so far as we have data,
we know that, in general, people with disabilities follow,
in terms of political opinions, some of the same patterns
as the broader public. And you know, as Judy
alluded to earlier, usually, folks don’t take an
identity-first conception of their disability. And so while we, in some
sense, have tens of millions of people, a large voting
bloc, practically, we haven’t seen voting patterns
really track with that. Now, there are some
very significant ways in which the disability
community does mobilize around candidates and policy issues
that speak very directly to their interests. I think we saw that
in the context of– two years ago, in the fight
over Medicaid per capita caps and the attempt to repeal
the Affordable Care Act. We saw significant mobilization
of the disability community and, particularly, of
disability rights groups. But we’re continuously
facing this challenge that there’s the
disability rights community, and the
disability rights culture, and infrastructure, and so on. And then there’s this
vastly larger group of people who just happened
to have disabilities. And if we want to increase the
effectiveness of the disability rights community,
we have to expand it to encompass more than
just a small percentage of the disability
community, because that’s the way that we’re going
to start meaningfully influencing voting
patterns and really come into political maturity
as a stakeholder group. – Yeah. That’s a really
important perspective. Thank you. So we’ll now open it
up to the audience for some Q&A. So
please, does anybody have a first question
for the panelists? Looks like right here. – Hi there. My name’s Mandy Curtis. I’m a social worker
who actually worked in the medical field
for a few years, and now I run a private
practice that works a little bit on disability. I’ve been legally
blind since birth, and I do adaptive rock climbing. I was thinking a
lot about what we’ve discussed in terms of in group
and out group, citizenship, and global participation. And I’ve noticed we’ve talked
a lot about young people and youth, and I
think there’s been kind of a focus of
discussion on people who have had disability and
kind of grown up with it from a young age. Something that I’ve interacted
with a lot in my life and in my work is,
in fact, adults who have acquired
disability, or have maybe grown up with a condition but
not known what it was, or had their disability changed the way
their body functions over time. And I think I have come to some
thoughts about this on my own. But I would love to open
this up to a panel of people who are very experienced
in these different ways, and ask you, what do you
think are ways that we– as a community, but within our
societies and our cultures– kind of open the
door for people who have experienced
the shock and even the loss of acquiring
a disability, and having to
relate to their body and to their
community in a new way that they really maybe not– they didn’t really have
control over at the time? How do we kind of make space
for that complicated journey and integration of possibly
acquiring a new identity? – Cheri, can I maybe
take a shot at that? – Absolutely. – So I was injured in a
car crash as an adult. I’d just graduated
from law school. And so I– I mean, I know exactly
what you’re talking about. Acquiring a disability at
that age, for me, was– I had a life, like
before and after. It was really that clear. And it was also very clear to me
about how people perceived me. And so there was a lot of– aside from the fact that I
was learning my own body, people around me
were having to learn how to interact with me
because there was– there continued to be this
fear, if you want, this subliminal fear about
my newly-acquired disability. I had a lot of people who
were praying for me every day. That didn’t work. [LAUGHTER] I had a lot of people who
just couldn’t deal with it. They just could
not deal with it. But then I had some
amazing people. I mean, my family
was incredible. I had a lot of people
who just really made sure that I was given all
of the opportunities to make sure that I could
continue to do the work that I wanted to do. On a personal level,
I was also very clear that I didn’t want to be
the disability lawyer. And so for the first
couple of years, I was totally not engaged
in the disability agenda. I was working on
children’s rights. I was working on social
and economic rights. I did not want to be pigeonholed
as the disability lawyer. But as we know, that
doesn’t last for too long. Increasingly, my work
on children’s rights were about children
with disabilities. Increasingly, my work
around prisoners’ rights was to find out what was
happening with prisoners with disabilities. And then I just
thought, you know, I just need to be true
to myself and call it. And I think, obviously, it was
the best thing I’ve ever done. But I do think that
there’s a transition, and people experience
that very differently. But, yeah. So that was my story. – Can I also answer
that question? – Absolutely. – What was your name? – Mandy. – Mandy. Mandy, that was a
fantastic question, and I’m so glad you raised it. The vast majority of people
with disabilities in the United States are older adults. And they’re older adults
who have most likely aged into disability. And so to kind of
add color to what Ari was saying about
voting blocs and how we don’t vote as a
big disability vote, it’s because the
majority of those voters are older adults who will say
things like, I just don’t hear as well as I used to. And the vast majority
of people that I work with in my office in
Houston are older adults. And so when I am usually on
the phone with, let’s say, a 70-year-old woman with limited
English who is becoming blind due to diabetes, and she is
talking to me about how scared she is, and about how much– how hard this is for her, the
first thing that I have to do is respect that. What I cannot do is say, oh,
but it’s OK to be disabled, and you should have
disability pride. I can’t do that. That’s going to shut
down the conversation. And what I find myself
doing, many times, is very, very slowly trying to
not only connect individuals to resources, but to community,
because what I have found is that community
can save lives. And I have a story here. So during Hurricane
Harvey, I think one of the greatest
public health crises that Houston faced was
older adults who, again, aged into disability, were not
connected to disability support systems, and were living
very tentative existences. And we worked with a man
whose name was Mr. Johnson. Mr. Johnson was blind
because of a car accident. He had diabetes, and he
had lymphedema in his legs. His leg wraps became
contaminated with floodwater, and so his legs became infected. And so he was at significant
risk of losing his legs. And it was always
tricky to call Mr. Johnson because he couldn’t–
he had not been taught to use assistive technology
and was blind. So you would have to
call him and leave a voicemail, which
he would then try to write down to call you back. And he couldn’t tell
us what kind of leg wraps he needed because
he couldn’t see the labels and wasn’t connected to people
who could come in and read them for him. And so what we did was basically
sent out a disability welcoming wagon to Mr. Johnson’s
house so that he could see, one, people with
limited mobility who were able to help him– these were the folks
that brought him food– and connect him to
other blind folks. And I remember, he called
me three months later. And he said, Ms. Maria,
thank you for introducing me to Maria and Michael. They saved my life. And so I think we
need to develop better systems of
exposing people who are aging into disability
to community because, to them, it’s just a sign of their
fragility and their mortality, which, if we’re all being
honest with ourselves, are very hard to contend with. – I was struck, and
I’ve been struck over the course of the
last several years, by how the disability community
and the idea of disability culture really needs to be
referred to more in the plural than in the singular. It’s very challenging because
we want to be able to say, well, people with
disabilities want this. You know, folks say,
people with disabilities want you to refer to them
with person-first language. But in reality, for
some communities, that’s not the case. The autistic community,
the deaf community, the blind community– there’s often a preference
for identity-first language. We want to be able to say,
people with disabilities don’t want to cure. Well, for many
disability groups, folks do, very
intensely, want to cure. And for others, we
very intensely don’t. And I think the challenge
that we run into is we built this really powerful
political coalition that came together to pass
the ADA, and defend it, and to fight for
disability rights in a variety of contexts. But that political
coalition is really a hodge-podge of dramatically
different kinds of experiences and people who
think of themselves in dramatically different ways. And so the more that we can
start thinking of the first point of contact
for, especially, folks with newly
acquired disabilities– but even folks who’ve grown up
with their disabilities but are looking for a disability
community for the first time– to be their native part of
the disability community, rather than trying to take
our political coalition and turn it into something that
it really hasn’t been, except for a small number
of people culturally. I think the better
off we’re going to be. And the good news is that there
are a lot of folks doing that. And there are a lot of
folks doing excellent work to continue to build,
and grow, and expand the different
disability cultures that carry such resonance for
so many different people. – Thank you, Ari. So with that– actually, that
was such a rich question, thank you– and such a rich discussion
that we used up the time. Now, I will say that I
think all of our panelists would be very open to answering
further questions one-on-one after this formal session ends. But I also don’t want to cut
into people’s break time, which is, of course, very important. So with this, we’ll break. How long, Becky? For 25 minutes. Please remember that there
are accessible bathrooms. There’s plenty of
folks in the back. Just please ask, if you
have any questions regarding where to find that. And let’s please
have another round of applause for our amazing
panelists, Maria, Ari, and Charlotte. [APPLAUSE] And we’ll see you
back very soon. Thank you.

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