WEBVTT

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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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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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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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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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marches. That all helped but even that

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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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"aha" moment that told you that the ADA is

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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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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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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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some of the significant improvements

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in equally effective communication,

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some of the requirements around programs,

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you know, all of those have 
significantly changed

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most--- can't even say most 
of the time--often

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there have been many 
really great initiatives over

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the years but we've always had to maintain

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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,

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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 often times

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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 accessibility

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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 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

NOTE Paragraph

00:25:38.291 --> 00:25:46.163
in a petition to the US Department of
Health and Human Services

00:25:46.163 --> 00:25:50.637
demanding that people with disabilities

00:25:50.637 --> 00:25:58.211
be immediately relocated out of
nursing homes and other

00:25:58.211 --> 00:26:07.792
Congregate settings due to the 
horrific circumstances

00:26:07.792 --> 00:26:10.961
in those congregate settings

00:26:10.961 --> 00:26:16.054
due to covid-19 and the failure

00:26:16.054 --> 00:26:23.290
to provide appropriate protections

00:26:23.290 --> 00:26:30.394
for people with disabilities
in institutional settings.

00:26:30.394 --> 00:26:36.462
The ADA back in 1990

00:26:36.462 --> 00:26:42.926
very clearly gave people with disabilities

00:26:42.926 --> 00:26:48.025
significant rights, and...

00:26:51.335 --> 00:27:06.484
even when challenged in 1999,
the Olmstead case,

00:27:06.484 --> 00:27:14.254
which was a Georgia case, and two women

00:27:14.254 --> 00:27:19.108
who.. Lois and Elaine, Lois Curtiss

00:27:19.108 --> 00:27:20.909
an incredible woman I've had the

00:27:20.909 --> 00:27:24.972
pleasure of being with on a number

00:27:24.972 --> 00:27:30.509
of occasions, the two of them

00:27:30.509 --> 00:27:35.974
demanded that they had a right to live in

00:27:35.974 --> 00:27:39.589
the most integrated setting appropriate 
to their needs

00:27:39.589 --> 00:27:45.409
and the decision, the case went

00:27:45.409 --> 00:27:47.782
all the way to the Supreme Court

00:27:47.782 --> 00:27:54.533
and I was among those who

00:27:54.533 --> 00:27:58.629
slept out on the steps of the 
Supreme Court

00:27:58.629 --> 00:28:02.474
on the night before their case was heard

00:28:02.474 --> 00:28:04.077
and I was among

00:28:04.077 --> 00:28:07.834
the folks who celebrated out in front of

00:28:07.834 --> 00:28:12.031
the Supreme Court on the day that 
that decision came

00:28:12.031 --> 00:28:15.755
down in favor of Lois and Elaine's right,

00:28:15.755 --> 00:28:20.026
and the rights of thousands, 
tens of thousands,

00:28:20.026 --> 00:28:24.028
millions of people with disabilities

00:28:24.028 --> 00:28:29.238
to live in the most integrated setting

00:28:29.238 --> 00:28:31.376
appropriate to their needs.

00:28:32.485 --> 00:28:36.994
Given that we are 21 years 
after that decision,

00:28:36.994 --> 00:28:43.080
yesterday the American Civil 
Liberties Union

00:28:43.080 --> 00:28:47.608
submitted a petition, 
and the World Institute

00:28:47.608 --> 00:28:50.462
on Disability joined a number of other

00:28:50.462 --> 00:28:56.856
disability organizations in 
bringing that petition

00:28:56.856 --> 00:29:01.481
demanding that people with disabilities

00:29:01.481 --> 00:29:05.243
be immediately relocated

00:29:05.243 --> 00:29:09.030
out of these congregate settings.

00:29:09.030 --> 00:29:15.462
Tens of thousands of people have died in

00:29:15.462 --> 00:29:20.052
the last hundred days, the genocide

00:29:20.052 --> 00:29:23.662
of people with disabilities because of

00:29:23.662 --> 00:29:28.396
the failures of implementation of that

00:29:28.396 --> 00:29:33.949
Olmstead decision, and the failures of our

00:29:33.949 --> 00:29:39.862
government to provide the kind of supports

00:29:39.862 --> 00:29:42.489
and services that enable

00:29:42.489 --> 00:29:44.502
people with disabilities

00:29:44.502 --> 00:29:49.008
to live safely and with the support they

00:29:49.008 --> 00:29:50.865
need in place in the community

00:29:50.865 --> 00:30:01.051
and, very infuriatingly our continued

00:30:01.051 --> 00:30:05.200
persistent calls for

00:30:05.200 --> 00:30:09.096
people with disabilities to be

00:30:09.096 --> 00:30:13.138
adequately served in these..

00:30:14.114 --> 00:30:17.857
in disasters have been ignored,

00:30:17.857 --> 00:30:23.473
and the bottom line has been 
that again over the

00:30:23.473 --> 00:30:28.608
last hundred days tens of 
thousands of people with

00:30:28.608 --> 00:30:31.278
disabilities have died. And when I was

00:30:31.278 --> 00:30:35.556
called on, saying that those were

00:30:35.556 --> 00:30:38.099
people with disabilities, I have had

00:30:38.099 --> 00:30:41.364
conversations with a number of senior

00:30:41.364 --> 00:30:45.004
government officials who, like, why are

00:30:45.004 --> 00:30:48.125
you saying people with disabilities?

00:30:50.071 --> 00:30:54.071
and you know, these were old people with

00:30:54.088 --> 00:30:58.088
underlying conditions living
in nursing homes

00:30:58.088 --> 00:31:01.958
and in long term care facilities.

00:31:01.958 --> 00:31:04.287
Well you don't go to a nursing home

00:31:04.287 --> 00:31:06.899
because you're old, you go to a nursing

00:31:06.899 --> 00:31:09.766
home because you have a disability and the

00:31:09.766 --> 00:31:12.286
supports and services you need to stay in

00:31:12.286 --> 00:31:14.876
the community have not been given to you.

00:31:14.876 --> 00:31:22.026
And the vast majority, 
some would say, all of

00:31:22.026 --> 00:31:25.766
those deaths in congregate facilities are

00:31:25.766 --> 00:31:29.041
people with disabilities, most of them

00:31:29.056 --> 00:31:34.776
black and brown and people living in

00:31:34.776 --> 00:31:41.406
poverty. And the failures of Americans

00:31:41.406 --> 00:31:44.318
with Disabilities Act, the Olmstead

00:31:44.318 --> 00:31:48.357
decision, and our government's

00:31:48.357 --> 00:31:54.284
will to monitor and enforce this law

00:31:54.284 --> 00:31:58.287
and the Rehabilitation Act have a

00:31:59.334 --> 00:32:03.464
devastating impact on where we are today.

00:32:03.464 --> 00:32:07.497
And the death of many of our siblings.

00:32:07.497 --> 00:32:11.527
Without any end in sight.

00:32:12.778 --> 00:32:17.870
Thank you Marcie, Ok. So next on 
to the future.

00:32:17.870 --> 00:32:20.099
With the work you've been doing,

00:32:20.099 --> 00:32:23.187
you've seen a lot of terms 
in progress and barriers.

00:32:23.187 --> 00:32:25.492
If you could pick one thing
to change

00:32:25.492 --> 00:32:28.639
or that needs to occur to have
access and equality

00:32:28.639 --> 00:32:30.259
--I know that's hard--

00:32:30.259 --> 00:32:34.639
one thing to have access and equality
present in the lives of people

00:32:34.639 --> 00:32:38.764
with disabilities what would that be?

00:32:38.764 --> 00:32:44.095
The one thing that must happen:

00:32:46.784 --> 00:32:52.911
people with disabilities have 
civil rights protections by law,

00:32:53.932 --> 00:32:57.882
and the one thing that
must happen

00:32:57.882 --> 00:33:03.378
is that their rights are monitored

00:33:03.378 --> 00:33:08.390
and enforced without exception.

00:33:10.630 --> 00:33:15.790
Following the law is not enough, 
we need universal

00:33:15.790 --> 00:33:20.126
design to be the standard, we need

00:33:20.126 --> 00:33:27.049
accessibility and accommodation
to be readily available,

00:33:27.049 --> 00:33:31.237
but we must have

00:33:31.237 --> 00:33:34.476
monitoring and enforcement.

00:33:34.476 --> 00:33:38.786
Every federal dollar is supposed 
to be spent in

00:33:38.786 --> 00:33:41.886
compliance with the Rehabilitation Act.

00:33:41.886 --> 00:33:47.493
And between what the Rehab Act and 
the ADA require

00:33:47.493 --> 00:33:57.080
there should be, no rue for
people with civil rights protections

00:33:57.080 --> 00:34:00.980
to be repeatedly denied

00:34:00.980 --> 00:34:06.970
and unable to fully participate

00:34:06.970 --> 00:34:11.110
in home and community life.

00:34:13.060 --> 00:34:21.431
Monitoring and enforcement 
must be the floor

00:34:21.431 --> 00:34:28.026
I have a ceiling, but enforcing
these civil rights laws

00:34:28.026 --> 00:34:31.676
is absolutely the floor.

00:34:31.676 --> 00:34:33.967
Thank you. So what can we do?

00:34:33.967 --> 00:34:37.526
What steps can we as community members
take right now?

00:34:38.776 --> 00:34:44.893
So what we can do right now is,
you know,

00:34:44.893 --> 00:34:48.969
one of my favorite sayings,
"never give up, never give in."

00:34:48.969 --> 00:34:53.045
Another of my favorites, 
"nothing about us without us."

00:34:54.185 --> 00:35:02.013
We as disability community leaders
need to stick together,

00:35:02.013 --> 00:35:10.421
we need to center our work
around people

00:35:10.421 --> 00:35:14.788
who are multiply marginalized, excluded.

00:35:16.228 --> 00:35:21.498
We need to be sure that we are not wasting

00:35:21.498 --> 00:35:28.776
our time with infighting, and with

00:35:28.776 --> 00:35:36.268
a kind of divisive childish behavior that

00:35:36.268 --> 00:35:39.927
some folks are still stuck on engaging in,

00:35:39.927 --> 00:35:46.177
we absolutely must reach a hand forward,

00:35:46.177 --> 00:35:50.217
reach a hand back, stick together

00:35:50.217 --> 00:35:56.097
and continue relentlessly

00:35:57.844 --> 00:36:11.884
to work towards the realization 
of the goal

00:36:11.884 --> 00:36:16.697
that the ADA was written around and so

00:36:16.697 --> 00:36:22.243
many of our siblings have fought so very

00:36:22.243 --> 00:36:27.973
hard for. We've lost a bunch of those

00:36:27.973 --> 00:36:37.403
hardworking visionary leaders; 
many of them

00:36:37.403 --> 00:36:42.653
have been lost in recent years, 
some of them

00:36:42.653 --> 00:36:49.543
have been lost along the way, we have an

00:36:49.543 --> 00:36:55.503
incredible legacy to care for, we have

00:36:55.503 --> 00:36:59.703
huge opportunities to work towards,

00:36:59.703 --> 00:37:03.930
technology has the potential for leveling

00:37:03.930 --> 00:37:07.223
the playing field if in fact people have

00:37:07.223 --> 00:37:11.983
real access and the World Institute on

00:37:11.983 --> 00:37:15.953
Disability and our commitment to

00:37:15.953 --> 00:37:19.413
work in partnership with other

00:37:19.413 --> 00:37:22.473
disability lead organizations and

00:37:22.473 --> 00:37:28.866
our allies to make communities

00:37:28.866 --> 00:37:32.615
stronger, more resilient for the whole

00:37:32.615 --> 00:37:36.360
community because when we get it right

00:37:36.360 --> 00:37:39.990
for people with disabilities, I think

00:37:39.990 --> 00:37:44.130
the whole community not only benefits

00:37:44.130 --> 00:37:50.240
but is stronger for our leadership,

00:37:50.360 --> 00:37:59.130
our contributions, our expertise in

00:37:59.130 --> 00:38:04.830
what it takes to make daily life 
work for everybody.

00:38:07.807 --> 00:38:09.963
Excellent, thank you.