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 now, 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, 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 and services

for people living in residential programs

early in my career with people in with

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 for 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 a lot

of 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 with the American 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 a 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 was kind of

peculiar that we didn't just get to still

be friends 'cause he didn't move away, he

just stopped going to my school. But 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 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 making space for 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 the, I had a requirement to do...

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

community service! Sorry. I had the

opportunity to do--I 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 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

really 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 and

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

disabilites 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 had never been given the opportunity,

others because of their physical

disability and a lack of any sort of

adapted utensils or other equipment.

So as I was feeding people, the sort of

routine was the same every day. A 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 mount was always white.

You know the meat, the vegetable, and the

starch. And I know that people like to

eat their meals in different ways. There

would also be a dessert every day, jello or

ice cream, 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 if they preferred 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

Disability 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

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 and

work being done of other legislative

initiatives and 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 that it 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 the

first time around, the bill didn't pass

but we were 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 states to develop, to

sign those postcards supporting the

passage of the ADA and then you know this

was sort of a wonderful but maybe

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!" And

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 is 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 the--thank

you. So within 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

as I begin to talk

about the current day as we're embarking

on ADA 30 it's really important to start

with how much things absolutely have

changed, certainly some of the architectural

barrier removal efforts, some of the

signficant improvements in equally effective

communications, some of the requirements

around programs, all of those have significantly

changed most often--can't even say--often

there's been really great initatives over

the years but we've always had to maintain

a relentless battle to not let anything slip

to not let anything lose any sort of momentum

towards accessiblity, if we look away for a minute

our rights will be swept away from us, and I can

certainly talk about about the very present day

and what I have to say about where

we are today is not great and I 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 oftentimes

in comparison to the examples to 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 more egregious

in housing, in employment, in the kinds of

assistive devices that are accessible, the

universal design of places and things

all of that points to examples of where we

are getting it right and in stark contrast

where we are egregiously getting it wrong

and just recently I have led my organizations

involvement in petiton to US Dept of Health and Human

Services 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 instutiotional settings

in the ADA back in 1990 gave people with

disabilities significant rights

even when challenged in 1999 the Olmstead

case, which was a Georgia case, two women

Lois and Elaine, Lois Curtiss an incredible

woman I had a chance to be with on a number

of occassions determined they had a right to

live in a circumstance most appropriate to

their needs, the decision went all the way to

the Supreme Court and I was among those who

slept outside the Supreme Court the night

before their case was heard and I was among

the folks who celebrated out in front of

the Supreme Court the day that case came

down in favor of Lois and Elaine's right,

and 10s of 1000's, millions of people with

disabilities to live in the most integrated setting

appropriate to their needs. Given

we are 21 years after that decision, yesterday

the American Civil Liberties Union submitted

a petition and the World Institute of

Disability joined a number of other disability

organizations bringing that petition

demanding that people with disabilities

relocate out of these congregate settings

10s of 1000's of people have died in

the last 100 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 to enable people with disabilities

to live safely and with the support they

need in the community