Judy Heumann

My name is Judy Heumann.
I'm from Brooklyn, New York.

My husband always teases me
because I was born in Philadelphia,

but I only lived there for three months.

And so I think my nature
is based on the fact that I

grew up in Brooklyn. And
you know, the old thing,

if you can make it in New
York, you can make it anywhere?

I think there's real truth
in that. I had polio in 1949.

I'm Jewish.

My parents were basically refugees from

Germany. My mother came over in '35.

My father in '34 and they lost parents,

grandparents, in the war and
many other relatives. So,

I was the first of three
children and I had polio in 1949.

And my--I'm 72

and a half. I became 72
and a half on June 18th.

Half birthdays have always been kind
of an important milestone in my life.

I have no idea why. And I've

had a very rich and
completely unplanned for life.

So I love to say, you know,

to younger people who are talking
about mapping out their future,

you want to have a future in mind,

but don't be too rigid cause you
have no idea where life could take

you, and try to be open
as much as possible.

I've been very lucky over the
course of my life to have been very

involved with the development of what we
call the Independent Living Disability

Rights movement in the United
States and internationally,

and have worked with

disability. We were all
emerging leaders, you know,

in the sixties and seventies.

Many of us playing,

I think very important
roles in the development of

the political movement in the
United States and also kind of a

unique time because we saw the development
of centers for independent living,

national disability rights
organizations like DREDF,

and international groups like
the International Disability

Alliance and major laws like Section 504,

the Individuals with
Disabilities Education Act,

the Americans with Disabilities
Act and many others.

So there's been a lot of
progress that's been made

over the course of my life,

including the UN Convention on the
Rights of Persons with Disabilities,

which is now ratified
by about 181 countries.

And the landscape is quite different
from when I was growing up,

when there was really no movement,

to really where there is
an emerging movement both

domestically and internationally.

Thank you very much. So in your mind,

given your vast knowledge and experience,

has the ADA made the
difference that you and so many

visionaries expected it to?

So

I think the ADA is an
amazing piece of legislation.

So it definitely has had a

significant impact on
changes in the United States.

That being said, the ADA, if it was
the only law that we had in place, no,

the law itself can not do. It's
not what it was meant to do.

It's an anti-discrimination
law. That's very broad, but,

I think we need to look at the
ADA as a piece of legislation

that is continuing to fill in what

we need. And the other laws
that I mentioned earlier,

I think are very important and there are
other laws besides the ones that I've

mentioned, like Section 508 and
501 and 502 and 503. And listeners

may not know all those
different provisions of law,

but they're very important because
they do things like require the

government to be hiring disabled people,

require contractors to be
hiring disabled people,

looking at issues of
technology and accessibility.

So those are all important
pieces of legislation.

And we need new and additional laws
in the areas like home and community

based services, because
that's a huge issue. We need,

in my view, more legislation
in the area of housing.

And we need really

stronger enforcement of many of
the laws that we already have.

But given that this is the
30th anniversary of the ADA,

I think it is a milestone
piece of legislation.

The effort that was taken nationally
to bring about the Americans with

Disabilities Act is, is
historic in and of itself.

And what I believe has been
very important that we've been

seeing is the newer generation.

I don't feel comfortable
with any of these words,

but as younger people are growing

up and recognizing what
they've been benefiting from,

both for the ADA and other laws,

they also very much recognize
that it's not enough.

And the ADA generation that,

which I consider myself a part also, but
the ADA generation of younger people,

I think very much sees that
they are benefiting from the

ADA, but that there is much more to do.

And that they're taking on
strong leadership roles. For me,

when you look at the composite
of these different laws,

we're seeing some very important changes.

While we still

don't have the same rates
of graduation from high

school and entrances to college
and graduation rates from college

as other populations in the US,

we still have been seeing increasing
numbers of people graduating

high school, attending colleges
and universities and graduating.

And you can see as I meet
more and more younger

people who are working in the
Googles and the Microsofts and

many at the Center on American Progress,

and many other organizations,
both public and private,

where the influence of disabled
people is really slowly emerging.

And so I think we have a lot,

we have results that are very important,

and we also can see now
the progress that we've

made and what more we need to do. Now,

clearly what more we need
to do is somewhat based on

legislation, but when we're looking at

remedies, and when I'm talking about
remedies now, I believe that, you know,

when we look at the unemployment
rate of disabled people,

it's much higher than
for non-disabled people.

And I think one of the reasons
for that is people's skepticism,

employers' skepticism, about whether
or not a disabled person, in fact,

could really be a good
employee. And so, you know,

you have groups like Disability:IN
and national organiza--I'm sorry--and

national organizations on
disability and others that have been

working for a growing number
of years with employers,

getting employers on board in a more

earnest way. But I would
say that Section 503--all

these mumbo jumbo letters,
I'm sorry--Section 503,

which is part of the
Rehabilitation Act of 1973,

is a very important tool because it
basically says if your con--if your

company is a contractor
with the federal government,

and there are many companies that are
contractors with the federal government,

that there's an aspirational goal
of hiring 7% of your workforce

as disabled people. So that, I think,

is also one of the reasons why
we're seeing more businesses

really want to look at what they're
doing, what they need to learn,

and having to implement
changes. So, you know,

there are many different
components at play

here that are resulting in
progress slowly being made,

but still with huge gaps.

Thank you, Judy. What

can people who find themselves
in a position--they don't
know all the acronyms,

they don't know all the laws, they're not,

they don't consider themselves
activists, necessarily,

maybe they're advocates or maybe they're
just lay people who are learning,

who are seeking knowledge--what
advice or what inspiration (and

maybe that's the wrong word...

I don't want to use the word inspiration)
but what would you say would be a next

step for people who are just
wanting to take the ADA's

intent further and create
inclusive communities and

work areas?

I

believe it's important.

We talk about 61 million disabled
people in the United States.

They're obviously not all of work age,

but I think many people who

have disabilities do not
necessarily identify as having a

disability. So for me,

that's one of the big objectives
that we need to be working towards.

And that is really helping
people to identify and understand

the scope of disability that
the ADA and other laws cover.

It's important that we as individuals

really look at

why we may feel ashamed of our

disabilities, whether or
not we express it that way.

I think that the combination of
shame and fear that we may not be

talking about if we have
diabetes or epilepsy or

cancer or whatever are invisible--anxiety

or depression or bipolar or whatever... If

we can feel,

if we're able as a movement
to really reach out to

those millions of people who don't
know that they may have a disability

or may know that they have a disability,

but don't have a community
that they can be a part of,

cause they're not aware of it...

I think that's really one
of the big issues that we
need to be dealing with over

the next 5 to 10 years is
really expanding our circle.

And that circle with

its expansion will also be a circle which

is representative of race, religion,

sexual orientation, disability,

so that we can really show in our

actions the richness of our community.

And part of the issue of the
richness of our community,

is like many other communities,

we have not been together.

So people with intellectual
disabilities are not necessarily

involved with people who are blind or
deaf or have physical disabilities.

I think one of the beauties of the
movement over the last 30 to 50 years

is also that it really is becoming
a more diverse community and

that diversity is not just race and
religion and sexual orientation.

It's also significantly
by kind of disability

because as some people
have discussed, there

is in many ways the hidden

pecking order.

The more you look and sound
like a non-disabled person,

the more you may be able to advance.

And so I think that's another whole
issue that we really need to be

one for all in all for one,

and be able to understand and support

each other.

We need to continue to work
on expanding our movement, not

just getting those of us with
disabilities who are identifying

as disabled people becoming more active,

but we talk about 61
million disabled people in

the United States, and 1--at least 1
billion disabled people around the world,

and our numbers, as far as
visibility and activity,

are not seen as strongly as
what our real numbers are.

So we're needing to be talking
with people to allow them to

understand what disabilities
are in the United States like

anxiety and depression
and bipolar and various

learning disabilities and, you know,

cancer and diabetes and epilepsy,

and what we know we have
hundreds of different types

of disabilities.

But if you don't understand that
you may have a disability that will

potentially

result in discrimination and you
don't know your rights under the law,

or you do know all of that,

but you're a little ashamed
or afraid of disclosing your

disability for fear of not being able to

really be a part of your community
or fear of what could happen

on the job. That's really, I think,

one of the important parts of our movement
growing and bringing in the diversity

that we represent both by
disability category, by race,

by gender sexual orientation,
religion, et cetera.

We are the largest,

most diverse community in the
United States and around the world.

We need to relish in that and we
need to be able to ensure that

the country and the world understand
the breadth of who we are and why we're

important. So when I think
about the future, people ask me,

what do you think is going
to be in the next 30 years?

And I really can't address
30 years. That's beyond

what I'm willing to think
about at this point.

But I do think we can be looking
at the next 3 to 5 to 10 years,

where we really have to be
learning about who we are.

We need to have an
understanding, for example,

of disparities that may exist in
various communities based on race and

socioeconomic status.

There are people within the
United States who are not

benefiting from laws because they
don't have the resources to hire

an attorney or an advocate.
And the government, in my view,

is not always enforcing
laws as they should be.

When I worked in the Clinton
administration and was
an assistant secretary of

the Office of Special Ed
and Rehabilitative Services,

it was really one of my
objectives to have the federal

government exercise its
capacity to provide technical

assistance with states and, you know,

to work with them in a reasonable way,

but also to make them aware and

families aware that the state
departments of education,

as an example,

have a responsibility to ensure that
disabled kids in their state are

benefiting from IDEA and
other pieces of legislation.

So I think as our movement is growing,

we also need to become more knowledgeable.

Not everybody because not
everybody is interested in policy,

but I think it is
important that people know

where the disability rights organizations
are. So if they want to join they can,

you know, groups like the American
Association of People with Disabilities,

the National Association of the Deaf,
the National Federation of the Blind,

on and on and on, the Autistic
Self-Advocacy Network, you know, many,

many different groups. I want
to see our community grow.

I want our community in
its expansion to also

become more demanding. And
by that I also mean our

coverage in the media and
representation of disability.

I think most people would agree is
nowhere near where it needs to be.

And that's one of the big problems I think
that we also still face is that we're

not represented in
advertising, in television,

in documentaries, in film,
in writer's rooms, on and on.

So we're still needing to be
throwing the cards up in the

air and as they're tumbling,

quickly organizing them
into appropriate sets and

continuing to move forward.

Thank you. Excellent.

That spoke to me on a personal level and
I'm sure it spoke to a lot of people or

will speak to a lot of people.
Thank you for those words of wisdom.

Is there anything else that you would
like to share that you haven't shared?

Let's

see. I mean,

right now in this COVID period,

I think we need to be networking

as much as possible.

We need to be really recognizing

that COVID is not only having
an impact on the health

of some disabled individuals, but

the economic impact is going to
be quite significant. And attempts

that are still being made to
do things like repeal the ACA

I, I believe that people in
the United States are gradually

understanding that everyone
should be getting healthcare,

that people who are not
insured are at great risk

and it has an adverse effect
on our economy overall.

So I think when we look at fighting
for healthcare, as an example,

this is not just an issue
for disabled people.

This is an issue for all people in
this country and identifying ways that

we, as a disability community,

can continue to work with
the leadership conference on

civil rights and their
members, women's organizations,

GLAAD, other LGBTQ
organizations, religious groups,

interfaith groups... these, I think,
are very important audiences and

we need to be recognizing
that budgets at the local

state and federal level are things
that we're going to have to be

very involved in trying
to help ensure that

cuts are not going to put us back years.

And so we can't,

I think we must

be activists and we must look
to many different organizations,

including those in our communities
to really volunteer with those

groups, learn from those groups,

and be a part of activism
in our communities.

Thank you. Judy, I

want to just close with
acknowledging you for being

somebody who has gone
through the blood, sweat,

and tears with absolute
determination and whose

actions, strategic actions,

and activism have impacted the
lives of so many people in so

many ways that many are not aware of yet.

We appreciate you. And thank you
for being here with us today.

Two other quick things...

if you haven't seen the movie Crip
Camp, which is out on Netflix,

I encourage you to look at it.

And I also have a book
that came out in February

called Being Heumann. Thank you.

And on Sunday, December 28th, in June,

Crip Camp 2020 has been running Sunday

discussions on different
disability topics and

yesterday I had the privilege of having
a dialogue with President Obama who

said that one thing that we all
have in common is being human.

And I quipped with him because that's
the name of my book, Being Heumann,

and my name is not
spelled H U M A N but H E

U M A N N. But nonetheless, I
think at the end of the day,

what he said is very true. And that
is one thing that we have in common,

regardless of where we live in this world,

or who knows what else is out there, but

we are all humans. And at the end
of the day, as disabled individuals,

as we know,

anyone can join our family
at any point in time.

And we don't want people fearful of
that, who, people feeling that they,

as non-disabled people
or as disabled people,

have a very important role to play in
helping to ensure that our communities

are welcoming and barriers are removed,

that allow us all to
make our contributions.

And I really want to say that it's an
honor for me to be a part of this movement

and it's an honor for me to share with
hundreds and hundreds of other disabled

people, activism, and the belief
that we can make a difference,

and we are. So thanks so much
for inviting me to do this.