Marcie Roth

You'll see in the corner the record button

So you should see that it's recording now,

and I'm going to mute myself

and you'll go ahead and do your intro.

Thank you Marcie.

Hi there, I'm Marcie Roth

and I have been working
in disability rights

for my whole adult life,

and actually, since I was
a freshman in high school.

I am currently the executive director and
CEO of the World Institute on Disability,

and I have been working
over the years in services

for people living in residential programs
early in my career

with people in,

children in school settings,

people in vocational rehabilitation,

and then people in
community living environments,

then along the way, I
became very involved in disability rights

and very involved in the
early days of advocacy

before the ADA was introduced.

And then I worked for disability advocacy
organizations almost ever since.

In addition to my own disability,

I'm also the parent of two

now adults with disabilities.

My Husband also has a disability,

and much of my family also happen
to be people with disabilities

so disability rights is just part of

everything I am and most everything I do.

I did spend from 2001 and onward

focusing very much on what happens
for people with disabilities

before, during, and after disasters.

And that's been a real particular
laser focus of mine ever since,

and in fact, I've had the opportunity

as an appointee in the
Obama administration

to spend just about 8 years at FEMA,

establishing FEMA's Office of
Disability Integration Coordination,

and building a cadre of disability experts

of the same pond, supporting governors

and emergency managers
and most particularly

engaging people with disabilities,
and disability organizations

in emergency preparedness

and throughout disaster response recovery
and mitigation.

So one last piece since I've been with

the World Institute on Disability
since last September,

my ongoing focus on global
disability rights has really been

something that I've had much more
opportunity to be actively involved in

and I have spent the time since joining

WID building a strategic planning process

and supporting the organization to
establish new priorities,

taking a look at the
organization's mission

and very recently establishing
four particular areas of focus

for the organization as we move forward.

Thank you Marcie. Excellent, okay

I apologize that my neighbor is chipping
a lot of brush today,

so it's making extra sound
whenever I unmute

but don't worry, it won't interfere
with your recording.

Okay, so the first question is
about the past.

So tell of your first memory
realizing that there were

accessibility issues, discrimination,
or lack of inclusion.

What is your personal story
or connection

to the American's with Disabilities Act?
What do you remember

about the day that it was signed,
if applicable?

And what was the impact on
you and on others?

Remember to tap something
so that the camera shifts to you

before you start.

I first became aware of disability
at a very young age.

I had a best friend in first grade,
his name was Gregory,

and he and I were
just wonderful friends.

We spent a lot of time together,

and then all of the sudden
one day, Gregory was gone,

and I didn't know what happened to him
or where he went

and it wasn't until many years later

that I found out that Gregory
had Down Syndrome,

and he had been removed
from my Kindergarten class,

and first grade I think it was
at that point,

and apparently he had been sent
to some other school somewhere.

And the loss of his friendship
was pretty surprising

and I didn't understand, you know,
where he went.

Looking back on it, it's kind of peculiar
that we didn't get to still be friends

'cause he didn't move away, he just
stopped going to my school.

But, I...

I remember just being confused and then
over the next number of years,

I lived in a town that was also
the home of Save the Children,

and I was always very interested in
the work that Save the Children was doing,

and I am embarrassed to admit
my earliest involvement

in humanitarian work was from a,
you know, very charity-model approach,

and I spent a lot of my childhood
raising money for Save the Children,

and getting involved in other activities
that were very much following

the charity-pity model and certainly not
a model of

making space for and supporting and
lifting up other people with disabilities.

the onset of my disability wasn't until
many years later,

but when I was in high school,
I had a requirement to do

I can't even remember
what it's called now!

Community service! Sorry.

I had an opportunity to do, or I had
an obligation to do community service,

and I started off, this was the year
of the first Earth day

and I started off crushing glass
at the local recycling center,

and it turned out that
that was really boring,

but lots of my classmates were
volunteering

at a state institution
for people with disabilities,

and I joined them once a week and
looking back on it again,

it was pretty shocking that at
13 years old,

I was assigned as the teacher
of a classroom of 30 adults

who had never had the opportunity
to attend school, and they now had

a 13 year old teacher once a week.

Needless to say, I learned way more
from them than they learned from me,

but we had a lot of fun, and many of them
became friends

very much along the rest of my path.

Unfortunately, some of them are
no longer alive,

but there are a couple of people who
are still very much a part of my life

and fortunately, they were successful in

liberating themselves from
that state institution.

And so, they and many others
taught me a lot,

but the real pivotal experience for me,
I was working back at

that state institution, it was my first
paid job in disability services,

and I had been hired to work
in what was called a "cottage"

for 40 women with
intellectual disabilities,

and this "cottage" was on
beautiful grounds,

but the women lived in a building,
20 on one side, 20 on the other side,

and my responsibilities included

assisting them in bathing and
getting dressed and in eating.

Many of them were unable
to feed themselves.

Some because they just had never been
given the opportunity,

and others because of their
physical disability

and a lack of any sort of
adapted utensils or other equipment.

So as I was feeding people, sort of
the routine was the same every day.

The plate would come out,
and there would be

3 mounds of food on the plate.

One mound was always brown,
one mound was always green,

and one mound was always white.

You know the meat, the vegetable,
and the starch.

And, you know, I know that people like to
eat their meal different ways.

There would also be a dessert every day,

jello, or ice cream, or
something again always in a mound.

And so I would spend time with each of the

individuals who were having their meal

and would sort of be working together,

trying to figure out
did they prefer to have

to eat their dessert first?

Some people liked to do that.

Did they prefer

a little bit of the brown and a little bit

of the white all on the same fork?

Did they not want their food touching?

You know and I would sort of
work back and forth

with them to try and figure out what

their preference was and I got in trouble

because I was spending too much time

and ultimately, I was moved to a different

position because I was taking too much

time giving people an opportunity to make

some choices and express some preferences.

So that was extremely pivotal and in

many ways you know, those early early

experiences have really totally driven

who I am and what I believe
all these years later.

In terms of the
Americans with Disabilities Act,

I had a very close personal experience

with what was then called

"public law 94142" the Education of

All Handicapped Act, later on renamed

the Individuals with Disabilities Act,
IDEA

and I had a very personal family

experience with IDEA and became aware of

legislative initiatives and how the IDEA

had just been passed. And then I started

to become more aware of the work being

done. And this was back in the 70s

work being done on some other legislative

initiatives, the 504, the passage of

the Rehabilitation Act, followed by the

504 sit-in in San Francisco to get the

regulations put in place. That really

caught my attention and between the little

bits of information I was getting there

and the work I was doing

and then becoming a full-time advocate

going to work for an
independent living center

in 1982, I then became extremely involved

in systems change and how to develop

policy, how to organize, how to support

the rights and voices and preferences of

other people and because I lived in

Connecticut and the original author of

the Americans with Disability Act,

the first time the bill was introduced was

Senator Weicker of Connecticut, and

Senator Weicker, father of a
great young man

who had Down Syndrome.

Senator Weicker was very involved with the

disability advocacy community in

Connecticut, and I then had the incredible

opportunity to go to Boston and testify

at one of the Congress major hearings--

field hearings on the Americans with

Disability Act. So you know of course that

first time around, the bill didn't pass

but boy oh boy were we revved up

and in the passage of the ADA,
in the period in which

once the bill was re-introduced and votes

were organizing, I remember that we had

stacks and stacks and stacks of bright

pink postcards and we were organizing

folks across the state to develop,

to sign those postcards supporting the

passage of the ADA and then you know this

was sort of a wonderful but maybe a little

bit misleading experience,
we actually were

successful. The bill got passed! And I

remember thinking,
"Oh, well this wasn't that hard

I mean, you know,
we had to go at it twice

but well this wasn't so hard.

Let's take on some more legislation!"

So it turns out that it wasn't as easy

as it looked to me. It wasn't just about

hot pink postcards and meetings and

marches. That all helped but even that

sometimes these days, it doesn't seem to

be enough to change policy.

So that's my earliest journey to 1990.

Thank you Marcie. Okay we're going to the

present now. So just so you know, I do

have another interview at 2:00, so we're

going to have 3 more sections: the present

the future, and the call to action.

So just to pace yourself within those.
--thank you

OK so the present, has the ADA

made a difference? Tell us about your

"aha" moment that told you that the ADA is

or is not making a difference and to what

extent based on your passions and areas of

expertise, where do you see or not see the

impact of the ADA?

So the ADA has had a huge

and sweeping impact

and it's important for me

to begin as I talk

about the present day as we're embarking

on ADA 30 it's really important to start

with how much things absolutely have

changed, you know so certainly some of the

architectural barrier removal efforts,

some of the significant improvements

in equally effective communication,

some of the requirements around programs,

you know, all of those have
significantly changed

most--- can't even say most
of the time--often

there have been many
really great initiatives over

the years but we've always had to maintain

a relentless battle to not

let anything slip, to not lose

any sort of momentum
towards accessibility.

If we look away for a minute,

our rights will be swept away from us.

And I can certainly talk about

the very present day,

and what I have to say about where

we are today, is not great

and so I do want to take
a little more time

to call out the significant progress

in so many aspects of daily life

in which we can

call out failures of ADA compliance,

enforcement of the law,
but it is often times

in comparison to the examples of where

it's working, so when transportation

is not accessible, we're calling it out

because we know the good and

promising practices that
have been in place

for transportation accessibility

make the failures so much more egregious

in housing, in employment, in the kinds of

assistive devices that are available,

the universal design of places and things

all of that points to the
examples of where we

are getting it right and in stark contrast

the areas where we are
egregiously getting it wrong.

And I have to say that
just very recently,

I have led my
organization's involvement

in a petition to the US Department of
Health and Human Services

demanding that people with disabilities

be immediately relocated out of
nursing homes and other

Congregate settings due to the
horrific circumstances

in those congregate settings

due to covid-19 and the failure

to provide appropriate protections

for people with disabilities
in institutional settings.

The ADA back in 1990

very clearly gave people with disabilities

significant rights, and...

even when challenged in 1999,
the Olmstead case,

which was a Georgia case, and two women

who.. Lois and Elaine, Lois Curtiss

an incredible woman I've had the

pleasure of being with on a number

of occasions, the two of them

demanded that they had a right to live in

the most integrated setting appropriate
to their needs

and the decision, the case went

all the way to the Supreme Court

and I was among those who

slept out on the steps of the
Supreme Court

on the night before their case was heard

and I was among

the folks who celebrated out in front of

the Supreme Court on the day that
that decision came

down in favor of Lois and Elaine's right,

and the rights of thousands,
tens of thousands,

millions of people with disabilities

to live in the most integrated setting

appropriate to their needs.

Given that we are 21 years
after that decision,

yesterday the American Civil
Liberties Union

submitted a petition,
and the World Institute

on Disability joined a number of other

disability organizations in
bringing that petition

demanding that people with disabilities

be immediately relocated

out of these congregate settings.

Tens of thousands of people have died in

the last hundred days, the genocide

of people with disabilities because of

the failures of implementation of that

Olmstead decision, and the failures of our

government to provide the kind of supports

and services that enable

people with disabilities

to live safely and with the support they

need in place in the community

and, very infuriatingly our continued

persistent calls for

people with disabilities to be

adequately served in these..

in disasters have been ignored,

and the bottom line has been
that again over the

last hundred days tens of
thousands of people with

disabilities have died. And when I was

called on, saying that those were

people with disabilities, I have had

conversations with a number of senior

government officials who, like, why are

you saying people with disabilities?

and you know, these were old people with

underlying conditions living
in nursing homes

and in long term care facilities.

Well you don't go to a nursing home

because you're old, you go to a nursing

home because you have a disability and the

supports and services you need to stay in

the community have not been given to you.

And the vast majority,
some would say, all of

those deaths in congregate facilities are

people with disabilities, most of them

black and brown and people living in

poverty. And the failures of Americans

with Disabilities Act, the Olmstead

decision, and our government's

will to monitor and enforce this law

and the Rehabilitation Act have a

devastating impact on where we are today.

And the death of many of our siblings.

Without any end in sight.

Thank you Marcie, Ok. So next on
to the future.

With the work you've been doing,

you've seen a lot of terms
in progress and barriers.

If you could pick one thing
to change

or that needs to occur to have
access and equality

--I know that's hard--

one thing to have access and equality
present in the lives of people

with disabilities what would that be?

The one thing that must happen:

people with disabilities have
civil rights protections by law,

and the one thing that
must happen

is that their rights are monitored

and enforced without exception.

Following the law is not enough,
we need universal

design to be the standard, we need

accessibility and accommodation
to be readily available,

but we must have

monitoring and enforcement.

Every federal dollar is supposed
to be spent in

compliance with the Rehabilitation Act.

And between what the Rehab Act and
the ADA require

there should be, no rue for
people with civil rights protections

to be repeatedly denied

and unable to fully participate

in home and community life.

Monitoring and enforcement
must be the floor

I have a ceiling, but enforcing
these civil rights laws

is absolutely the floor.

Thank you. So what can we do?

What steps can we as community members
take right now?

So what we can do right now is,
you know,

one of my favorite sayings,
"never give up, never give in."

Another of my favorites,
"nothing about us without us."

We as disability community leaders
need to stick together,

we need to center our work
around people

who are multiply marginalized, excluded.

We need to be sure that we are not wasting

our time with infighting, and with

a kind of divisive childish behavior that

some folks are still stuck on engaging in,

we absolutely must reach a hand forward,

reach a hand back, stick together

and continue relentlessly

to work towards the realization
of the goal

that the ADA was written around and so

many of our siblings have fought so very

hard for. We've lost a bunch of those

hardworking visionary leaders;
many of them

have been lost in recent years,
some of them

have been lost along the way, we have an

incredible legacy to care for, we have

huge opportunities to work towards,

technology has the potential for leveling

the playing field if in fact people have

real access and the World Institute on

Disability and our commitment to

work in partnership with other

disability lead organizations and

our allies to make communities

stronger, more resilient for the whole

community because when we get it right

for people with disabilities, I think

the whole community not only benefits

but is stronger for our leadership,

our contributions, our expertise in

what it takes to make daily life
work for everybody.

Excellent, thank you.