Reflections from an ADA Generation | Rebecca Cokley | TEDxUniversityofRochester

Let me take you
back to 1989.

A woman walks in for

a meeting that will
decide her future.

She's a single
mom who after

her husband left her,

worked full-time and
went back to school

full-time to make a better

life for her and
her daughter.

Across from her sits

the tenure committee
at the college

she works at.

None of them look like her.

She's up for
consideration for tenure,

which for her would

mean lifetime job security

for working her dream job,

which was running a center

for students with
disabilities.

It's the actual very center

that 20 years earlier

she entered into
as a student when

she was restarting
her academic career.

She's a Little
Person, so this is

particularly
personal to her.

The chair of the
committee leans back

in his chair and
says, "Thank you,

but we have decided to deny

you tenure, because, well...

you can't reach more than

the bottom six inches
of a chalkboard.

And what kind of
teacher would you

be if you can't

use the top technology in

our classroom?"
(meaning a chalkboard).

"Thank you and goodbye."

That woman was my
mother, Joan Hare.

A year later, the Americans

with Disabilities
Act passes,

and that very action
would have been

illegal because people
fought for it.

The ADA passed because

people died
fighting for it.

Died of disabilities that
when combined with

structural
barriers kept them

from leaving their homes,

died from having
been sent to

institutions and nursing
homes as children.

And growing up
where the smell of

oxygen was always

tainted with the
smell of death.

I walk in the
room and you can

tell I'm a person
with a disability,

in my case, dwarfism.

I'm one of the
20 percent of

people with dwarfism
who grew up

in a family
where my parents

also had it, as do
two of my three kids.

This isn't the case
for most families

that include people
with disabilities.

Most of us grew
up in households

with no one like us.

And when I say 'us,' I
mean the roughly one in

five Americans that have

a disability in
this country, 1 in 5.

So that's 20% of your
graduating class,

that's 20 percent
of your coworkers,

it's 20 percent
of your family,

20% of your friend group.

We are here in
society today because

our elders work
on legislation

like the Americans
with Disabilities Act,

the Individuals with

Disabilities Education Act,

and Section 504 of the
Rehabilitation Act,

where people like them,

those of us sitting in
this very room today,

could experience
full participation,

equality of opportunity,

economic self-sufficiency,

to be able to live
independently.

In other words,

the American dream,
if you will.

Because before the ADA,

disabled people
couldn't leave

their homes to go to
the grocery store,

to go to the bank, to
go to a happy hour.

Before the ADA, you didn't

see sign language
interpreters here on

the stage at concerts
or at comedy shows.

Before the ADA,
the community

didn't have access
to society.

Parents were pressured to

give up their children
at the point of

birth so that they would be
warehoused in massive

institutions, never seen,
never held, never

played with by
their families.

To be disabled
meant you could

literally be arrested
off the street

under 'ugly laws' until
as late as the 1970s.

But let's go back to
that pivotal day,

July 26th, 1990.

It was hot,
sticky and damp.

One of those days
that remind you that

our founding fathers
had the 'genius,'

if you will, to build

the nation's
capital on a swap.

Back when the ADA was
being actively fought for,

the image of
disability was one of

white men and wheelchairs.

For most people,

the concept of
disability and

accessibility itself meant
curb cuts and Braille,

not sign language
interpreters

when the governor is
on TV talking about

an incoming hurricane.

Or the speech to
text functions

I know that all of you use

on a regular
basis and never

think about the fact
that it wouldn't

exist if it weren't
for disabled people.

The world has changed,

but the need to
provide access to

ensure opportunity has not.

They gathered on
that south lawn

of the White House,

the lobbyists who
literally did

the wheeling and
dealing (pun intended)

alongside the
activists who had

thrown themselves out
of their wheelchairs

and dragged themselves
up the steps of

the United States
Capitol to protest

the lack of equal
treatment under the law.

People with intellectual
disabilities who

had only recently been

released after spending
the first half

of their lives in
an institution,

the Deaf community, who

had fought and
rebelled to have

Gallaudet University
for the first time

led by a Deaf president.

The ADA, as a law

affected over a fifth
of our population.

The largest expansion of

civil rights
since the Civil

Rights Act of 1964.

And the diversity
of the lawn

on that day
clearly showed it.

And it was signed

under a Republican
administration.

So why did George H. W. Bush

not only sign
the bill into law,

but he made it part of
his campaign pledge.

This was historic.
It's because

President Bush
knew a secret.

The ADA was more
than a law.

The ADA was freedom.
In his case,

it was freedom for his
three-year-old daughter

who had passed away
after battling leukemia.

But had she lived,

he knew that she
would have been

fighting her entire life
for access to society.

He saw his daughter
when he got a Dear

Mr. President letter
from Lisa Carl,

a girl from
Washington State,

who wrote him a letter
about wanting to

go to the movies
with her friends.

That's all she wanted, to

go to the movies
and she couldn't.

It's your cousin with
a learning disability,

your mom who's a
cancer survivor,

your best friend who
started therapy in

college when they

started dealing
with anxiety.

And your neighbor
who served in

the military and
stepped on an IED.

Lisa's story, that of
the girl that wanted

to go to the movies
with her friends,

help cause a
cultural shift in

how we think about
disability that

has repercussions
even today.

For those of us who
grew up with the ADA,

its impact is both
subtle and powerful.

You may not even
think about it.

We're on the tail end
of what we like to

call the ADA generation.

The first generation of

Americans who've grown
up with the connection

between the
Individuals with

Disabilities
Education Act and

the Americans with
Disabilities Act.

People at this
intersection,

have what we like to say,

the benefit of
the connection

between preparation,
access, and opportunity.

Not only have you
always gone to

school with your
disabled peers--

which is the
preparation piece--

but those same peers
have the right to be able

to access and move about
society just like you can--

this is the access part.

And with the
addition of access,

it should open the door to

opportunity ensured by

the non-discrimination
protections in

place when you
move into work.

The idea is that if
you've done the work,

you should be able
to access the spaces

and be provided the
opportunity to succeed.

Back in 1990 when
the ADA was passed,

only 2% of people

with disabilities
went to college.

Today, roughly
11 percent do.

That is because
for one of the

first times in history,

policies are somewhat
working together.

The Individuals with

Disabilities Education Act,

which governs your rights.

K through 12,
public education,

means that when you're
sixteen you get to be

asked what you want
to be when you grow up.

Sixteen.

That might not sound
like a big deal,

but for young people
with disabilities,

this very question,
this process of what

they call
transition planning

was revolutionary.

But can't we all take
a moment to agree

that waiting to ask

somebody what they
want to be til

they're 16-years-old,
is a bit late.

Children are drawing
pictures in

preschool about wanting
to be scientists.

We have 'take your
child to work'

days and job shadowing,

but for people with

disabilities we're
still fighting

the basic expectation
that we can't achieve,

that we can't succeed,

and that we're unable
to contribute.

What good is it to
graduate if you

can't enter the place
you want to work?

Imagine if you grew
up wanting to go work

for like Facebook
or Twitter.

And you show up for your
interview after you--

with your degree in hand--

and you literally
cannot walk in

the door or you
walk in and you

literally cannot understand
a word coming out

of their mouth
because you don't

have a sign language
interpreter.

Preparation falls
short without access.

The ADA takes
that expectation

and runs with it.

It says, not only
do we believe

that you can achieve,

we know that you still
need access to do so.

It has said this for almost

29 years now and we've seen

disabled people achieving
great things in

that time that would

have seemed
impossible before.

But there still are

so many people
facing ableism,

audism and
structural barriers.

Ableism being the
oppression and

discrimination faced
by disabled people.

And audism being
the oppression and

discrimination faced
by the deaf community.

So what does disability
mean in the 21st century?

Reflecting back on
preparation, access,

and opportunity, it
looks different.

It's taken it from the
shadows and pushed it

into the mainstream in
new and exciting ways.

Innovation and technology
means new access to

spaces in new and
innovative ways

via telecommuting and
video conferencing.

But at the same time,

technology should never
be used as a band-aid

for an organization
or company

deciding that they don't
want to be accessible.

You grew up
watching Dick Clark

on television on
New Year's Eve.

That in itself is
revolutionary.

That was his show,
that was his night.

After his stroke,
if you looked on

the internet,
people continue to

talk about how
he should just

retire from the spotlight.

"He should stop working."

"No one wants to see
that on television."

To me, it symbolized
the opportunity to see

something that made
others uncomfortable.

It was power.

But Dick Clark did
the preparation.

The access was given.
No one would've told him

that he didn't have a right
to be king of New Year's.

He'd always been
king of New Year's.

Did he have to change
up how he ran the show

in a way that
would work for

him given his disability?

Yeah, he did.

And it provided
an opportunity

to see disability front and

center on one of the
busiest nights of

the year, contributing
to American culture, and

exercising tangible
media power

and presence in a way
like never before.

Senator Tammy Duckworth,
a military veteran,

a stateswoman--
and for me--a mom,

snuck her iPhone in
a prosthetic leg to film a

sit-in on the floor of

the House of
Representatives.

She fights for
the rights of

the constituents
of Illinois,

and daily fights to

protect the Americans
with Disabilities Act

from the numerous
attacks it's facing.

Kendrick Lamar,
recent Pulitzer Prize

winning hip hop
artist who has

talked about and lived
with depression and

trauma in his art and
in his work every day.

Trauma and discussions
around trauma and its

connection with
racism, sexism,

ableism, and homophobia
really are the next

directions that the
disability community

needs to be thinking about.

The last example I will give--
well, I'm a little person,

I have to talk about
him--Tyrion Lannister,

the most bad-ass
character to

grace the television screen
in at least 10 years.

So beloved and adored
that all of you,

the average-height public,

will even dress
as him for Halloween.

You wear shirts with a
Little Person on them.

You share memes that
never mock his height,

but always celebrate
his intellect.

Last year I open
the front door

on Halloween and there
in front of me stood a

six-foot-two teenager
dressed as Tyrion Lannister.

[light laughter]

Mind you, I didn't
know what to think,

even more
so I don't think

he knew what to
think when I

was standing on the
other side of the door.

[laughter]
But think about how

important that
is culturally,

we have a
non-disabled person

wanting to be a
disabled person.

He could have been Jamie,
had been John Snow,

he could have
been the hound,

but no, he chose Tyrion.

Those are just
a few examples,

but whereas back on that
day in July in 1990,

the public saw disability

and thought men
in wheelchairs.

The community looks
much different today.

So what does the
community look like?

37 million people
who deal with

migraines on a
regular basis.

30 million people with
eating disorders,

a million people who live
with chronic fatigue,

15 million women
with endometriosis,

25 million with IBS,

43 million people who live

every day with a mental
health disability.

All of you have

the same protections
that were won by

that same generation
who chained

themselves to buses and

crawled up the steps
of the Capitol.

The progress of the ADA,

it's demonstrated
not only by

the fact of all of
those examples,

but that the daughter
of the woman denied

tenure for only reaching

the bottom six inches
of the chalkboard,

21 years later walked into

the White House
where she served as

the director of
diversity outreach

for President Barack Obama.

And she wasn't the only one.

There were five
disabled women who

served in the White House

in the Obama
administration.

A building decades ahead of
the curve on accessibility

because of Franklin
Delano Roosevelt,

who also understood
the connection

between preparation,
access,

and opportunity, the

cornerstones of the
American dream.

But today there's repeated

threats to roll it back.

Today the ADA is
under attack.

There are people who
say that providing

access to people like
me, it's too expensive.

But there are tax
credits to help.

There are people who claim

that disabled people file
too many lawsuits to get

rich and access
too many places.

The law has been the
law for 28 years.

You've had 28 years to

become accessible
and disabled

plaintiffs are not
able to collect

monetary damages if
we win a lawsuit,

all we can win is access.

That we don't need to go to
shopping malls or hotels.

But why should your
money be looked

at any differently
than my money?

Haven't I labored
to earn it?

They say we should be
happy going back to the way

things were 29 years
ago because, hello,

ableism has been
eradicated.

Didn't get the memo?
Telling people you have

rights automatically
lifts you

out of the last
almost 40 years of

poverty, oppression and
institutionalization.

Non-disabled people
think that the world

has changed so much
that the ADA is great.

You say people have access,

you say things like,
"The only disability

is a bad attitude."

Frankly, there
are few phrases

that I find more insulting.

When you claim that
disability doesn't exist,

or isn't real or you don't

see it, it completely
diminishes

the threats that
I face when I

walk down the street
and have people come

up to me and tell me that

they can literally pick

me up and walk off with

me leaving my
children abandoned

because they
think it's funny

to mock disabled people.

It diminishes the
fights to get laws like

the ADA passed

the oppression
that still exists.

Over 70 percent of

polling places are
still inaccessible.

Women with disabilities
make $0.73

on the dollar compared

to men without
disabilities.

Our unemployment
rate hovers

around 70 percent.

Our young people
are three times

more likely to end
up in foster care,

six times more likely
to end up in jail.

The work of the
ADA is not done

while 50 percent of
the individuals killed

by law enforcement
are disabled people.

And in 32 states,

if you're a parent
with a disability,

the state can come in

and take your children with
no more cause than solely

the fact that you have
some type of disability.

Because of this
myth that equality

and inclusion have
arrived for the disabled

public, people think
about disability rights,

not as rights but a
special privileges.

Non-disabled people hire

disabled people to get
through the lines

quicker at amusement parks.

Who gets punished for that?

Disabled people.

Non-disabled
people print off

fake documentation
to get Fifi a vest

and get her on the plane.

Who gets punished for
that? Disabled people.

Non-disabled people steal

a dead relative's
parking placard

to not have to pay a meter.

Who gets punished for
that? Disabled people.

When in reality, if you
had to live our lives,

if you had to deal with the
oppression fatigue that

we live with, the
pseudo voyeurism,

spending weeks
navigating bureaucracy

to get to the one
damn person who can

approve something
like a piece

of software to allow you to
read, or a key to a restroom,

you'd be as fired up and
as frustrated as we are.

The latest attack
on the community

and the ADA is part of

a much broader strategy
to get those of

us that are deemed

unfit out of
the public eye.

Whether it be
the Muslim ban,

HB2, the Masterpiece
Cakeshop case,

or attacks on the ADA;
all of us from marginalized

communities are
seeing that even with

the work done to prepare
and the promise of opportunity,

denial of access can

still pull the rug
out from under us.

Instead of the world we
live in getting bigger and

bigger as access improves,
we're seeing it shrink.

We talk about
always wanting

better futures for
our children,

futures where they can
be more prosperous,

face less discrimination,

less inequality, future of
less steps, more ramps.

The power of the community
is in its diversity,

its evolution over time.

From kids with
polio in the 30s to

autistic outfielders
in 2018,

we continue to fight
for a seat at the table

while you continue to put
our rights on your menu.

But we must speak out.

We must use our voices to

remind people the
importance of the fact

that we are here to move
from preparation to

opportunity and
that access is

still important
and sadly lacking.

Preserving disability
rights and the legacy of

the ADA is the work of

your generation
to continue.

Your voices are central
to the fight ahead.

While there are
folks working

to turn back progress,

you could be a voice
promoting inclusion.

You can bend the arc of
justice into a ramp.

So I guess what I'm saying
is what I'm doing is

inviting not just
the one in five of

you who is out
as one of us,

but the additional
four out of five of

you to join us and
preserve these rights.

Because the world
is a more just

place when your sister,
your friend, your neighbor,

and your mom are
at the table.

So it's on you
to help ensure

that their rights
continue to be protected.

I welcome you to the fight.

[applause]