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You'll see in the corner the record button

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So you should see that it's recording now,

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and I'm going to mute myself now,

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and you'll go ahead and do your intro.

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Thank you Marcie.

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Hi there, I'm Marcie Roth

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and I have been working
in disability rights

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for my whole adult life,

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

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

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and I have been working
over the years in services

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for people living in residential programs 
early in my career

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with people in,

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children in school settings,

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people in vocational rehabilitation,

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and then people in 
community living environments,

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

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and very involved in the 
early days of advocacy

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before the ADA was introduced.

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

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In addition to my own disability,

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I'm also the parent of two

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now adults with disabilities.

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My Husband also has a disability,

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

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so disability rights is just part of

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everything I am and most everything I do.

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I did spend from 2001 and onward

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focusing very much on what happens 
for people with disabilities

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before, during, and after disasters.

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

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and in fact, I've had the opportunity

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as an appointee in the 
Obama administrashion

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to spend just about 8 years at FEMA,

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establishing FEMA's Office of 
Disability Integration Coordination,

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and building a cadre of disability experts

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of the same pond, supporting governors

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and emergency managers 
and most particularly

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engaging people with disabilities, 
and disability organizations

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in emergency preparedness

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and throughout disaster response recovery
and mitigation.

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So one last piece since I've been with

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the World Institute on Disability 
since last September,

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my ongoing focus on global
disability rights has really been

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

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and I have spent the time since joining

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WID building a strategic planning process

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and supporting the organization to
establish new priorities,

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taking a look at the 
organization's mission

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and very recently establishing
four particular areas of focus

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for the organization as we move forward.

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Thank you Marcie. Excellent, okay

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

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so it's making extra sound
whenever I unmute

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

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Okay, so the first question is
about the past.

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So tell of your first memory
realizing that there were

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accessibility issues, discrimination, 
or lack of inclusion.

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What is your personal story
or connection

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

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about the day that it was signed,
if applicable?

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And what was the impact on
you and on others?

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Remember to tap something
so that the camera shifts to you

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before you start.

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

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

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and he and I were
just wonderful friends.

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We spent a lot of time together,

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

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

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and it wasn't until many years later

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that I found out that Gregory
had Down Syndrome,

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and he had been removed
from my Kindergarten class,

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and first grade I think it was
at that point,

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

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And the loss of his friendship
was pretty surprising

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

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

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

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But, I...

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

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

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

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and I am embarrassed to admit
my earliest involvement

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

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

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and getting involved in other activities
that were very much following

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the charity-pity model and certainly not
a model of

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

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

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

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

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Community service! Sorry.

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

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

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and I started crushing glass
at the local recycling center,

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and it turned out that
that was really boring,

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but lots of my classmates were
volunteering

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at a state institution
for people with disabilities,

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

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it was pretty shocking that at
13 years old,

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

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

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a 13 year old teacher once a week.

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

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

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very much along the rest of my path.

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Unfortunately, some of them are
no longer alive,

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

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and fortunately, they were successful in

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liberating themselves from 
that state institution.

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

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

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

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

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for 40 women with
intellectual disabilities,

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and this "cottage" was on
beautiful grounds,

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

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and my responsibilities included

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assisting them in bathing and 
getting dressed and in eating.

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Many of them were unable
to feed themselves.

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Some because they just had never been
given the opportunity,

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and others because of their 
physical disability

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

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

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The plate would come out,
and there would be

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3 mounds of food on the plate.

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

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and one mount was always white.

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

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

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There would also be a dessert every day,

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

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And so I would spend time with each of the

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individuals who were having their meal

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and would sort of be working together,

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trying to figure out did they prefer to have

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to eat their dessert first?

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Some people liked to do that. Did they prefer

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a little bit of the brown and a little bit

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of the white all on the same fork?

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Did they not want their food touching?

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You know and I would sort of work back and Forth

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with them to try and figure out what

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their preference was and I got in trouble

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because I was spending too much time

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and ultimately, I was moved to a different

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position because I was taking too much

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time giving people an opportunity to make

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some choices and express some preferences.

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So that was extremely pivotal and in

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many ways you know, those early early

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experiences have really totally driven

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

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In terms of the Americans with Disabilities Act

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I had a very close personal experience

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with what was then called

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"public law 94142" the Education of

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All Handicapped Act, later on renamed

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the Individuals with Disabilities Act, IDEA

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and I had a very personal family

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experience with IDEA and became aware of

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legislative initiatives and how the IDEA

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had just been passed. And then I started

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to become more aware of the work being

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done. And this was back in the 70s

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work being done on some other legislative

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initiatives and the 504, the passage of

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the Rehabilitation Act, followed by the

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504 sit-in in San Francisco to get the

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regulations put in place. That really

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caught my attention and between the little

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bits of information I was getting there

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and the work I was doing

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and then becoming a full-time advocate

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going to work for an independent living center

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in 1982, I then became extremely involved

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in systems change and how to develop

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policy, how to organize, how to support

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the rights and voices and preferences of

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other people and because I lived in

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Connecticut and the original author of

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the Americans with Disability Act,

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the first time the bill was introduced was

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Senator Weicker of Connecticut, and

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Senator Weicker, father of a great young man

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who had Down Syndrome,

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Senator Weicker was very involved with the

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disability advocacy community in

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Connecticut, and I then had the incredible

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opportunity to go to Boston and testify

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at one of the Congress major hearings--

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field hearings on the Americans with

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Disability Act. So you know of course that

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first time around, the bill didn't pass

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but boy oh boy we were revved up and in the

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passage of the ADA, in the period in which

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once the bill was re-introduced and votes

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were organizing, I remember that we had

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stacks and stacks and stacks of bright

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pink postcards and we were organizing

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00:19:05,472 --> 00:19:12,518
folks across the state to develop,

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00:19:12,518 --> 00:19:16,887
to sign those postcards supporting the

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passage of the ADA and then you know this

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was sort of a wonderful but maybe a littal

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00:19:30,357 --> 00:19:36,026
bit misleading experience, we actually were

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successful. The bill got passed! And I

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

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I mean, you know, we had to

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

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Let's take on some more legislation!"

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00:19:51,077 --> 00:19:56,055
so it turns out that it wasn't as easy

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

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hot pink postcards and meetings and

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00:20:03,482 --> 00:20:09,216
marches--that all helped but even that

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00:20:09,216 --> 00:20:14,468
sometimes these days, it doesn't seem to

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00:20:14,468 --> 00:20:18,750
be enough to change policy.

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00:20:18,750 --> 00:20:27,902
so that's my earliest journey to 1990.

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Thank you Marcie. Okay we're going to the

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present now. So just so you know, I do

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

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going to have 3 more sections: the present

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the future, and the call to action.

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

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okay so within the present, has the ADA

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made a difference? Tell us about your

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00:20:55,157 --> 00:20:57,778
"aha" moment that told you that the ADA is

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00:20:57,778 --> 00:20:59,753
or is not making a difference and to what

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00:20:59,753 --> 00:21:02,923
extent based on your passions and areas of

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00:21:02,923 --> 00:21:05,585
expertise, where do you see or not see the

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impact of the ADA?

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So the ADA has had a huge

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and sweeping impact

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and it's important for me

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to begin as I begin to talk

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about the present day as we're embarking

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00:21:30,530 --> 00:21:35,405
on ADA 30 it's really important to start

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with how much things absolutely have

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00:21:39,864 --> 00:21:47,398
changed, you know so certainly some of the

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architectural barrier removal efforts,

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00:21:50,652 --> 00:21:54,865
some of the significant improvements

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00:21:54,865 --> 00:22:00,542
in equally effective communication,

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00:22:00,542 --> 00:22:04,902
some of the requirements around programs,

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00:22:04,902 --> 00:22:13,254
you know all of those have significantly changed

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00:22:13,254 --> 00:22:18,485
most--- can't even say most of the time--often

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00:22:18,485 --> 00:22:22,299
there have been many really great initatives over

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00:22:22,299 --> 00:22:30,868
the years but we've always had to maintain

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00:22:30,868 --> 00:22:37,591
a relentless battle to not

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00:22:37,591 --> 00:22:41,742
let anything slip, to not lose

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any sort of momentum towards accessibility,

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if we look away for a minute

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our rights will be swept away from us,

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and I can certainly talk about

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the very present day

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and what I have to say about where

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we are today is not great

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and so I do want to take a little more time

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to call out the significant progress;

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in so many aspects of daily life

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in which we can

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call out failures of ADA compliance,

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enforcement of the law but it is oftentimes

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in comparison to the examples of where

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it's working, so when transportation

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is not accessible, we're calling it out

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because we know the good and

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promising practices that have been in place

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for transportation accessiblity

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make the failures so much more egregious

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in housing, in employment, in the kinds of

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assistive devices that are available,

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the universal design of places and things

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all of that points to the examples of where we

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are getting it right and in stark contrast

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the areas where we egregiously getting it wrong

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and I half to say that just very recently I have

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led my organization's involvement in

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a petition to US Dept of Health and Human

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Services demanding that people with

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disabilities be immediately relocated

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out of nursing homes and other congregate

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settings due to the horific

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circumstances in those congregate

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settings due to covid-19

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and the failure to provide appropriate protections

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for people with disabilities

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in institutional settings

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the ADA back in 1990

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very clearly gave people with disabilityes

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significant rights, and

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even when challenged in 1999 the Olmstead case,

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which was a Georgia case, and two women

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who.. Lois and Elaine, Lois Curtiss

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an incredible woman I had the

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pleasure of being with on a number

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of occasions, the two of them

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demanded that they had a right to live in

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the most integrated setting

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appropriate to their needs,

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and the decision, the case went

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all the way to the Supreme Court

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and I was among those who

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slept outside the Supreme Court on the night

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before their case was heard

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and I was among

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the folks who celebrated out in front of

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the Supreme Court the day that desishon came

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down in favor of Lois and Elaine's right,

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and the rights of 1000s,10s of 1000's,

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millions of people with Disabilityes

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to live in the most integrated setting

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appropriate to their needs.

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Givin we are 21 years after that decision,

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yesterday the American Civil Liberties Union

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submitted a petition and the World Institute

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on Disability joined a number of other

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disability organizations in bringing that petition

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demanding that people with disabilities

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be immediately be relocated

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out of these congregate settings

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10s of 1000's of people have died in

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the last 100 days, the genocide

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of people with disabilities because of

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the failures of implementation of that

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Olmstead decision and the failures of our

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government to provide the kind of supports

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and services that enable

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people with disabilities

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to live safely and with the support they

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need in place in the community

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and, very infuriatingly our continued

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persistent calls for

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people with disabilities to be

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adequately served in these..

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in disasters have been ignored,

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and the bottom line has been again over the

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last 100 days 10s of 1000's of people with

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disabilities have died. And when I was

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called on, saying that those were

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people with disabilities I have had

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conversations with a number of senior

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government officials who, like, why are

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you saying people with disabilities?

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and you know, these were old people with

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underlying conditions living in nursing

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homes and in long term care facilities.

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Well you don't go to a nursing home

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because you're old, you go to a nursing

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home because you have a disability and the

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supports and services you need to stay in

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the community have not been given to you.

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And the vast majority, some would say, all of

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those deaths in congregate settings are

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people with disabilities, most of them

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black and brown and people living in

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poverty. And the failures of Americans

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with Disabilities Act, the Olmstead

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decision, and our government's

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will to monitor and enforce this law

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and the rehabilitation act have a

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devastating impact on where we are today.

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And the death of many of our siblings.

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Without any end in sight.

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Thank you Marcie, Ok. So next on to the

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future, with the work that you've been

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doing you've seen a lot of progress

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and barriers. If you could pick one thing

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to change or that needs to occur to have

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access and equality--I know that's hard

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--one thing to have equality and access

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present in the lives of people with

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disabilities what would that be?

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The one thing that must happen:

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people with disabilities have civil rights

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protections by law and the one thing

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that must happen

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is that their rights are monitored and

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enforced without exception. Following

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the law is not enough, we need universal

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design to be the standard we need

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accessibility and accommodation

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to be readily available but we must have

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monitoring and enforcement. Every

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federal dollar is supposed to be spent in

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compliance with the rehabilitation act

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and between the Rehab Act and the ADA

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they require, their should be, no

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rue for those people with civil rights

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protections to be repeatedly denied

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and unable to fully participate

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in home and community life. Monitoring

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and enforcement must be the floor

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I have a ceiling but enforcing

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these civil rights laws is absolutely

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the floor. Thank you. What can we do?

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What can we as community members

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take right now? So what we can do right

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now is, you know, one of my favorite

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sayings, "never give up, never give in"

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another of my favorites, "nothing about us

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without us" we as disability community

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leaders need to stick together, we need to

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center our work around people who are

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multiply marginalized, excluded

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we need to be sure that we are not wasting

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our time with infighting and with

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a kind of divisive childish behavior that

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some folks are still stuck in engaging in

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we absolutely must reach a hand forward

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reach a hand back stick together

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and continue relentlessly to work

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towards the realization of the goal

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that the ADA was written around and so

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many of our siblings have fought so very

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hard for. We've lost a bunch of those

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hardworking visionary leaders; many of them

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have been lost in recent years, some of them

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have been lost along the way, we have an

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incredible legacy to care for, we have

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huge opportunities to work towards

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technology has the potential for leveling

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the playing field if in fact people have

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real access and the World Institute on

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Disability and our commitment to

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work in partnership with other

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disability lead organizations and

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our allies to make communities

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stronger, more resilient for the whole

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community because when we get it right

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for people with disabilities I think

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the whole community not only benefits

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but is stronger for our leadership, our

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contributions, our expertise in

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what it takes to make daily life work for

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everybody. Excellent, thank you.