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,

that 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 a 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 e actively involved in

and I have spent the time since joining

WID building a strategic planning process

and supporting the organizations 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 that 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 highschool I had a requirement

to do community service I had and opportunity to do

or had an obligation to do community service

And I started off...this was the year of the

first Earth Day and I started crushing glass

at the local recycling center. I turned out

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 bug 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

very much a part of my life and fortunately

they were successful in liberating themselves

from that state institution, so they and

many others taught me a lot but the real

pivotal experience for me, I was working back

at that state institution. This 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 with 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 had

never been given the opportunity and others

because of their physical disability and

a lack of any sort of adaptive utensils or adaptive equipment

as I was feeding people it was the same every

day. A plate would come out and there were

3 mounds of food on the plate. One mound

was alway brown one mound was always green

and one mound was always white. The meat

the vegetable and the starch, and I know that

people like to eat their meal different

ways. There would also be a desert every

day, a jello or ice cream, again in a

mound.and I would spend time with each of

the individuals who were having their meal

and we'd be working together trying to

figure out, did they prefer to eat their desert first?

Did they prefer

a little bit of the brown and a little

bit of the white on the fork? Did they not

want their food touching? And so I would

work back and forth with them to try to

figure out what their preference was and

I got in trouble 'cause 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 preferences.

So that was extremely pivitol, and in many ways,

those 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 Disabiities 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, back in the 70's.

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 that I was doing

and then becomming 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 and support the

rights, voices and preferences of other

people and because I lived in Connecticut and

the original author of the Americans with

Disabilities Act, the first time the bill

was introduced was Senator Will Weiker

of Connecticut and Senator Weiker,

father of a great young man who

had Down Syndrome, Senator Weiker

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, Congressman Major Owens feild hearings

on the Americans with Disabiities Act so

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 reintroduced and folks were organizing

I remember that we had stacks and stacks

of bright pink postcards and we were

organizing folks across the state to sign

those postcards supporting passage

of the ADA and then...

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

well this wasn't that hard, we had to

go at it twice but, this wasn't so hard;

lets take on some more legislation so

turns out it wasn't as easy as it looked to me

is wasn't just about hot pink post cards

and meetings and marches.

That all helped but even that, sometimes

these days, doesn't seem to be enough

to change policy.

That said, that's my earliest journey

to 1990.

Thank you Marcie. Ok, were's going to the present now

Just so you know, I have another interview at

2, so we're gonna have 3 more sections

the present, the future

and the call to action so just to

pace yourself within that.

So, the present: Has the ADA made a

difference. Tell us about your "aha moment"

that told you that the ADA is or isn't making

a difference and to what extent

based on your areas of passions and

expertise where you see or not see the impact of the ADA

Marcie: 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 ADA30, it's really important to start with

how much things absolutely things have changed

so certainly some of the architectural

barrier removal efforts.

some of the significant

improvements in effective

equally effective communication

some of the requirements around programs.

All of those

have significantly changed...often.

There have been many

great initiatives.

Over the years

But we always had to maintain a relentess

battle to not let anything slip

to no 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. So I do want to take

a little bit 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 comparrison

to examples 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 accessiblity

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 it's just very recently, I

have lead 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, Lois and Elaine, Lois Curtis,

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 ccourt

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 tens

of thousands...millions of people with

disabilities to live in the most integrated setting

appropriate for their needs.

Given that we are 21 years after that

decision, yesterday the American Civil

Liberties Union submitted a petietion

and the World Insitute on Disability joined

a number of other disability organiations 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 kinds of supports and services that

enable people with disabilites

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've had conversations

with a number of senior government officials

who are like, "Why are you saying

people with disabilities... these were

old people with underlying conditions living

in nursing homes and 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 the the

Americans with Disabilities Act and 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 death of many of our siblings...

without end in sight.

Than you, Marcie. Ok, so next on to

the future with the work you've been doing

you've seen a lot of 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?

Marcie: The one thing that must

happen: People with disabiites have civil

rights protections by law and the one thing

that must happen is that thier rights are

monitored and enforced without

exception. Following the law is not enough.

We need universal designs 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 room

for people with those civil rights protections to

be repeatedly denied and unable to fully

participate in home and community life.

Monitoring and enforcement must be the

floor and the 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?

Marcie: So what we can do right now is

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, exluded

We need to be sure that we're not wasting

our time with infighting and the kind of

divisive, childish behavior that some folks are

still stuck on engaging in. We absolutely must

reach a hand forward and 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 hard-working

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

disabiity-led organizations and

our allys to make communities

stronger, more resilient for the whole

community. 'Cause 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.

Excelent. Thank you!