Marcie Roth

You'll see in the corner the record button

So you should see that it's recording now,

and I am 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 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

focusing on supporting governors

and emergency managers and most particularly

engaging people with disabilities and disability organizations

in emergency preparedness

and throughout disaster response recover and mitigation.

So one last piece since I've been with

the World Institute on Disabilities 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

with building a strategic planning process

and supporting the organization to establish new priorities

taking a look at the organizations 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 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 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 a very charity-model approach.

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 on set of my disability wasn't until many years later,

but when I was in high school, I had a

requirement to do community service and I

had an opportunity to do, had an obligation

to do community service and we started off.

This was the year of the first Earth Day

and I started crushing glass at the local

recycling center. It turned out that it

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, looking back on it again it was

pretty shocking 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 now had

a 13 year old teacher once a week.

Needless to say, I learned way more from them

then they learned from me, but we had a lot of fun

and many of them became friends, you know, 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 apart 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. 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.

This cottage was on beautiful ground, but

the women lived in a building with 20 on

one side and 20 on the other side.

My responsibilities included assisting them

in bathing and getting dressed and eating

many of them were unable to feed themselves

some because they never been given

the opportunity and others because of

their physical disability and a lack of any

supportive or adaptive utensils or other equipment,

so 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 always brown

One mound was always green

One mound was always white, you know the meat

the vegetable, and the starch, and I know that

people like to eat their meals different ways, there would

also be a dessert everyday, a jello, ice cream again in a mound.

I would spend time with each of the individuals

who were having their meal, and would sort of be kind of working

together trying to figure out, did they

prefer to eat their desert first?

And people like to do that, did they prefer

a little bit of brown and a little bit of white

all on the same fork? Did they not want

them touching, and you know I would sort of

work back and forth with them to try to

figure out what their preference was and

I got in trouble because I was spending

to much time and ultimately, I was moved

to a different position because I was taking

to much time giving people and

opportunity to make some choices and

express some preferences. 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 of these years later.

In terms of the American's with Disabilities Act

I had very close personal experience with

what was then called public law 94142:

The Education of All Handicaps 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.

Then I started to become more aware of the work

being done, this was back int he 70's. Working

being done on some other legislative initatives, the 504

The Passage of Rehabilitation Act, followed by the 504

sit-in in San Francisco to get the

regulations put in place. That really caught my attention,

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, voices and preferences of other

people and because I lived in Connecticut and the

original author of the American's 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 Welker was very involved with

the disability advocacy community in Connecticut

and I then had the incredible opportunity to

go to Boston and testify and on of the

Congressman Major Owens field of hearings

on the American's with Disabilities Act so

of course that first time around the bill

didn't pass. But boy oh boy, were we revved up

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

once the bill was reintroduced

and folks were organizing, I remember that we had

stacks and stacks and stacks of bright pink

post cards, and we were organizing folks across the state

to develop, to sign those post cards supporting

passage of the ADA and then, this was sort

of a wonderful but maybe a miss leading experience

we actually were successful! The bill got

passed, I remember thinking oh well this wasn't that hard,

we had to go at it twice but this wasn't so hard!

Let's take on some more legislation. So

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

It 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's my earliest journey to 1990.

Thank you Marcie, okay were going to present now

just so you know I do have another interview at 2

we are going to have three more sections.

The present, the future and the call to

action, so just to pace yourself within those

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 area of expertise, where you see or

not see the impact of the ADA.

So the ADA has had a huge and sweeping impact

and I... Its important for me to begin as I talk about

the present day as were embarking on ADA 30.

Its really important to start with, how

much things absolutely have changed, and 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

most, I can't even say most of the time... often.

There have been many great initiatives

over the years, but we always had to

maintain a relentless battle to, to not let

anything slip, to not lose and sort of momentum,

towards accessibility. If we look away for

a minute, our rights will be swept away

from us, 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 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 the promising practices that have

been in place for transportation accesabilty

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, In stark contrast

the areas where we are getting it egreigously

getting it wrong. I have to say that

just very recently, I have lead my

organization involvement in a petition to

the U.S Department of Health and Human

Services, demanding that people with

disabilities be immediately located

out of nursing homes and other congregate

settings due to the horrific circumstances

in those congregate settings, to Covid-19

and the failure to provide appropriate

protections for people with disabilities

and institutional settings. The ADA back in 1990

very clearly gave people with disabilities

significant rights, and even when

challenged in 1999, the homestead case

which was a Georgia case, and two women

who Lois and Elaine, Lois Curtis an

incredible woman, I have 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 intergraded

setting appropriate to their needs.

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. I was among the

folks who celebrated out in front of the

Supreme Court on the day that decision

came down in favor of Lois and Elaine

right and the rights of thousands, tens of

thousands, millions of people with

disabilities to be, to live in the most

intergraded 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 disability organizations

in a 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

homestead decision and the failures of our

government to provide that kind of support

and services that enable people with disabilities

to live safely and and with the support

they need in place in the community,

very infuriatingly, our continued persistent

call for people with disabilities to be

adequately served in these 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,

"why are you saying people with disabilities"

these were old people with underlying conditions

living in nursing homes, and long term care

facilities, look you don't go to a nursing home

because you are 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 that majority

of some would say of all those deaths in

congregate facilites are people with disabilities.

Most of them black and brown and people

living in poverty, and the failures of

American's with Disabilities Act, the homestead decision and

our governments will to monitor and force

this law and the rehabilitation act have a

devastating impact on where we are today

and the depth of many of our siblings,

Without out end in sight.

Thank you Marcie, okay so next onto the

future. With the work you have been doing

you have seen a lot in terms 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 is 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. 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 designs to be

the standard, we need accessibility

and the 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 the rehab act and what 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, 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?

So what we can do right now is

one of my favorite sayings is

"never give up, never give in"

another favorites is

"nothing about us, without us"

We as disability community leaders, need

to stick together, we need to center our work

around people who are multiple marginalized

excluded, we need to be sure that

we are not wasting our time with in fighting

and with the 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 hard working

visionary leaders, many of them have been

lost in recent years, some 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 of 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. When we get it right

for people with disabilities, I think the

whole community not only benefits is stronger

for our leadership, our contributions,

our expertise in what it takes to make daily life

work for everybody.

Excellent thank you.