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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

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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 administration

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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 off 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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Needless 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 mound 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.

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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 later.

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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, 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 were we revved up

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and in the 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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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 little

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bit misleading experience,
we actually were

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successful. The bill got passed! And I

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00:19:39,062 --> 00:19:43,671
remember thinking, 
"Oh, well this wasn't that hard

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

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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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be enough to change policy.

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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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OK so 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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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 talk

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about the present day as we're embarking

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on ADA 30 it's really important to start

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00:21:35,405 --> 00:21:39,864
with how much things absolutely have

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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 initiatives 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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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,

253
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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,

256
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and what I have to say about where

257
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we are today, is not great

258
00:23:16,971 --> 00:23:20,462
and so I do want to take 
a little more time

259
00:23:20,462 --> 00:23:27,922
to call out the significant progress

260
00:23:27,922 --> 00:23:36,711
in so many aspects of daily life

261
00:23:36,711 --> 00:23:41,098
in which we can

262
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call out failures of ADA compliance,

263
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enforcement of the law,
but it is often times

264
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in comparison to the examples of where

265
00:24:04,098 --> 00:24:07,111
it's working, so when transportation

266
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is not accessible, we're calling it out

267
00:24:13,529 --> 00:24:19,852
because we know the good and

268
00:24:19,852 --> 00:24:23,619
promising practices that
have been in place

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00:24:23,619 --> 00:24:28,585
for transportation accessibility

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make the failures so much more egregious

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in housing, in employment, in the kinds of

272
00:24:42,778 --> 00:24:48,787
assistive devices that are available,

273
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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

276
00:25:13,365 --> 00:25:19,330
the areas where we are 
egregiously getting it wrong.

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And I have to say that 
just very recently,

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I have led my 
organization's involvement

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00:25:38,291 --> 00:25:46,163
in a petition to the US Department of
Health and Human Services

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00:25:46,163 --> 00:25:50,637
demanding that people with disabilities

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00:25:50,637 --> 00:25:58,211
be immediately relocated out of
nursing homes and other

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Congregate settings due to the 
horrific circumstances

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00:26:07,792 --> 00:26:10,961
in those congregate settings

284
00:26:10,961 --> 00:26:16,054
due to covid-19 and the failure

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to provide appropriate protections

286
00:26:23,290 --> 00:26:30,394
for people with disabilities
in institutional settings.

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The ADA back in 1990

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00:26:36,462 --> 00:26:42,926
very clearly gave people with disabilities

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00:26:42,926 --> 00:26:48,025
significant rights, and...

290
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even when challenged in 1999,
the Olmstead case,

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00:27:06,484 --> 00:27:14,254
which was a Georgia case, and two women

292
00:27:14,254 --> 00:27:19,108
who.. Lois and Elaine, Lois Curtiss

293
00:27:19,108 --> 00:27:20,909
an incredible woman I've had the

294
00:27:20,909 --> 00:27:24,972
pleasure of being with on a number

295
00:27:24,972 --> 00:27:30,509
of occasions, the two of them

296
00:27:30,509 --> 00:27:35,974
demanded that they had a right to live in

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00:27:35,974 --> 00:27:39,589
the most integrated setting 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

300
00:27:47,782 --> 00:27:54,533
and I was among those who

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00:27:54,533 --> 00:27:58,629
slept out on the steps of the 
Supreme Court

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00:27:58,629 --> 00:28:02,474
on the night before their case was heard

303
00:28:02,474 --> 00:28:04,077
and I was among

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00:28:04,077 --> 00:28:07,834
the folks who celebrated out in front of

305
00:28:07,834 --> 00:28:12,031
the Supreme Court on the day that 
that decision came

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00:28:12,031 --> 00:28:15,755
down in favor of Lois and Elaine's right,

307
00:28:15,755 --> 00:28:20,026
and the rights of thousands, 
tens of thousands,

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00:28:20,026 --> 00:28:24,028
millions of people with disabilities

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00:28:24,028 --> 00:28:29,238
to live in the most integrated setting

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appropriate to their needs.

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Given that we are 21 years 
after that decision,

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yesterday the American Civil 
Liberties Union

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00:28:43,080 --> 00:28:47,608
submitted a petition, 
and the World Institute

314
00:28:47,608 --> 00:28:50,462
on Disability joined a number of other

315
00:28:50,462 --> 00:28:56,856
disability organizations in 
bringing that petition

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00:28:56,856 --> 00:29:01,481
demanding that people with disabilities

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00:29:01,481 --> 00:29:05,243
be immediately relocated

318
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out of these congregate settings.

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Tens of thousands of people have died in

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00:29:15,462 --> 00:29:20,052
the last hundred days, the genocide

321
00:29:20,052 --> 00:29:23,662
of people with disabilities because of

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00:29:23,662 --> 00:29:28,396
the failures of implementation of that

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00:29:28,396 --> 00:29:33,949
Olmstead decision, and the failures of our

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00:29:33,949 --> 00:29:39,862
government to provide the kind of supports

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00:29:39,862 --> 00:29:42,489
and services that enable

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00:29:42,489 --> 00:29:44,502
people with disabilities

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00:29:44,502 --> 00:29:49,008
to live safely and with the support they

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need in place in the community

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00:29:50,865 --> 00:30:01,051
and, very infuriatingly our continued

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00:30:01,051 --> 00:30:05,200
persistent calls for

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00:30:05,200 --> 00:30:09,096
people with disabilities to be

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00:30:09,096 --> 00:30:13,138
adequately served in these..

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00:30:14,114 --> 00:30:17,857
in disasters have been ignored,

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00:30:17,857 --> 00:30:23,473
and the bottom line has been 
that again over the

335
00:30:23,473 --> 00:30:28,608
last hundred days tens of 
thousands of people with

336
00:30:28,608 --> 00:30:31,278
disabilities have died. And when I was

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00:30:31,278 --> 00:30:35,556
called on, saying that those were

338
00:30:35,556 --> 00:30:38,099
people with disabilities, I have had

339
00:30:38,099 --> 00:30:41,364
conversations with a number of senior

340
00:30:41,364 --> 00:30:45,004
government officials who, like, why are

341
00:30:45,004 --> 00:30:48,125
you saying people with disabilities?

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00:30:50,071 --> 00:30:54,071
and you know, these were old people with

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00:30:54,088 --> 00:30:58,088
underlying conditions living
in nursing homes

344
00:30:58,088 --> 00:31:01,958
and in long term care facilities.

345
00:31:01,958 --> 00:31:04,287
Well you don't go to a nursing home

346
00:31:04,287 --> 00:31:06,899
because you're old, you go to a nursing

347
00:31:06,899 --> 00:31:09,766
home because you have a disability and the

348
00:31:09,766 --> 00:31:12,286
supports and services you need to stay in

349
00:31:12,286 --> 00:31:14,876
the community have not been given to you.

350
00:31:14,876 --> 00:31:22,026
And the vast majority, 
some would say, all of

351
00:31:22,026 --> 00:31:25,766
those deaths in congregate facilities are

352
00:31:25,766 --> 00:31:29,041
people with disabilities, most of them

353
00:31:29,056 --> 00:31:34,776
black and brown and people living in

354
00:31:34,776 --> 00:31:41,406
poverty. And the failures of Americans

355
00:31:41,406 --> 00:31:44,318
with Disabilities Act, the Olmstead

356
00:31:44,318 --> 00:31:48,357
decision, and our government's

357
00:31:48,357 --> 00:31:54,284
will to monitor and enforce this law

358
00:31:54,284 --> 00:31:58,287
and the Rehabilitation Act have a

359
00:31:59,334 --> 00:32:03,464
devastating impact on where we are today.

360
00:32:03,464 --> 00:32:07,497
And the death of many of our siblings.

361
00:32:07,497 --> 00:32:11,527
Without any end in sight.

362
00:32:12,778 --> 00:32:17,870
Thank you Marcie, Ok. So next on 
to the future.

363
00:32:17,870 --> 00:32:20,099
With the work you've been doing,

364
00:32:20,099 --> 00:32:23,187
you've seen a lot of terms 
in progress and barriers.

365
00:32:23,187 --> 00:32:25,492
If you could pick one thing
to change

366
00:32:25,492 --> 00:32:28,639
or that needs to occur to have
access and equality

367
00:32:28,639 --> 00:32:30,259
--I know that's hard--

368
00:32:30,259 --> 00:32:34,639
one thing to have access and equality
present in the lives of people

369
00:32:34,639 --> 00:32:38,764
with disabilities what would that be?

370
00:32:38,764 --> 00:32:44,095
The one thing that must happen:

371
00:32:46,784 --> 00:32:52,911
people with disabilities have 
civil rights protections by law,

372
00:32:53,932 --> 00:32:57,882
and the one thing that
must happen

373
00:32:57,882 --> 00:33:03,378
is that their rights are monitored

374
00:33:03,378 --> 00:33:08,390
and enforced without exception.

375
00:33:10,630 --> 00:33:15,790
Following the law is not enough, 
we need universal

376
00:33:15,790 --> 00:33:20,126
design to be the standard, we need

377
00:33:20,126 --> 00:33:27,049
accessibility and accommodation
to be readily available,

378
00:33:27,049 --> 00:33:31,237
but we must have

379
00:33:31,237 --> 00:33:34,476
monitoring and enforcement.

380
00:33:34,476 --> 00:33:38,786
Every federal dollar is supposed 
to be spent in

381
00:33:38,786 --> 00:33:41,886
compliance with the Rehabilitation Act.

382
00:33:41,886 --> 00:33:47,493
And between what the Rehab Act and 
the ADA require

383
00:33:47,493 --> 00:33:57,080
there should be, no rue for
people with civil rights protections

384
00:33:57,080 --> 00:34:00,980
to be repeatedly denied

385
00:34:00,980 --> 00:34:06,970
and unable to fully participate

386
00:34:06,970 --> 00:34:11,110
in home and community life.

387
00:34:13,060 --> 00:34:21,431
Monitoring and enforcement 
must be the floor

388
00:34:21,431 --> 00:34:28,026
I have a ceiling, but enforcing
these civil rights laws

389
00:34:28,026 --> 00:34:31,676
is absolutely the floor.

390
00:34:31,676 --> 00:34:33,967
Thank you. So what can we do?

391
00:34:33,967 --> 00:34:37,526
What steps can we as community members
take right now?

392
00:34:38,776 --> 00:34:44,893
So what we can do right now is,
you know,

393
00:34:44,893 --> 00:34:48,969
one of my favorite sayings,
"never give up, never give in."

394
00:34:48,969 --> 00:34:53,045
Another of my favorites, 
"nothing about us without us."

395
00:34:54,185 --> 00:35:02,013
We as disability community leaders
need to stick together,

396
00:35:02,013 --> 00:35:10,421
we need to center our work
around people

397
00:35:10,421 --> 00:35:14,788
who are multiply marginalized, excluded.

398
00:35:16,228 --> 00:35:21,498
We need to be sure that we are not wasting

399
00:35:21,498 --> 00:35:28,776
our time with infighting, and with

400
00:35:28,776 --> 00:35:36,268
a kind of divisive childish behavior that

401
00:35:36,268 --> 00:35:39,927
some folks are still stuck on engaging in,

402
00:35:39,927 --> 00:35:46,177
we absolutely must reach a hand forward,

403
00:35:46,177 --> 00:35:50,217
reach a hand back, stick together

404
00:35:50,217 --> 00:35:56,097
and continue relentlessly

405
00:35:57,844 --> 00:36:11,884
to work towards the realization 
of the goal

406
00:36:11,884 --> 00:36:16,697
that the ADA was written around and so

407
00:36:16,697 --> 00:36:22,243
many of our siblings have fought so very

408
00:36:22,243 --> 00:36:27,973
hard for. We've lost a bunch of those

409
00:36:27,973 --> 00:36:37,403
hardworking visionary leaders; 
many of them

410
00:36:37,403 --> 00:36:42,653
have been lost in recent years, 
some of them

411
00:36:42,653 --> 00:36:49,543
have been lost along the way, we have an

412
00:36:49,543 --> 00:36:55,503
incredible legacy to care for, we have

413
00:36:55,503 --> 00:36:59,703
huge opportunities to work towards,

414
00:36:59,703 --> 00:37:03,930
technology has the potential for leveling

415
00:37:03,930 --> 00:37:07,223
the playing field if in fact people have

416
00:37:07,223 --> 00:37:11,983
real access and the World Institute on

417
00:37:11,983 --> 00:37:15,953
Disability and our commitment to

418
00:37:15,953 --> 00:37:19,413
work in partnership with other

419
00:37:19,413 --> 00:37:22,473
disability lead organizations and

420
00:37:22,473 --> 00:37:28,866
our allies to make communities

421
00:37:28,866 --> 00:37:32,615
stronger, more resilient for the whole

422
00:37:32,615 --> 00:37:36,360
community because when we get it right

423
00:37:36,360 --> 00:37:39,990
for people with disabilities, I think

424
00:37:39,990 --> 00:37:44,130
the whole community not only benefits

425
00:37:44,130 --> 00:37:50,240
but is stronger for our leadership,

426
00:37:50,360 --> 00:37:59,130
our contributions, our expertise in

427
00:37:59,130 --> 00:38:04,830
what it takes to make daily life 
work for everybody.

428
00:38:07,807 --> 00:38:09,963
Excellent, thank you.