You'll see in the corner the record button
So you should see that it's recording now,
and I'm going to mute myself now, and
you'll go ahead and do your intro.
Thank you Marcie. Hi there, I'm Marcie Roth, and
I have been working in disability rights
for my whole adult life, since I was a
freshman in high school. I am currently
the executive director and CEO of the
World Institute on Disability and I have
been working over the years and services
for people living in residential programs
early in my career with people in with
children in school settings, people in
vocational rehabilitation, and then people
in community living environments, then
along the way, I became very involved in
disability rights and very involved in
the early days of advocacy before
the ADA was introduced. And then I worked
for disability advocacy organizations
almost ever since. In addition to my own
disability, I'm also the parent of two now
adults with disabilities. My husband also
has a disability and much of my family
also happen to be people with disabilities
so disability rights is just part of
everything I am and most everything I do.
I did spend from 2001 and onward focusing
very much on what happens for people
with disabilities before, during, and
after disasters. And that's been a real
particular laser focus of mine ever since
and in fact, I've had the opportunity
as an appointee in the Obama
administration to spend just about 8 years
at FEMA, establishing FEMA's Office of
Disability Integration Coordination and
building a cadre of disability experts of
the same pond, supporting governors and
emergency managers and most particularly
engaging people with disabilities and
disability organizations in emergency
preparedness and throughout disaster
response recovery and mitigation. So one
last piece since I've been with the World
Institute on Disability since last
September, my ongoing focus on global
disability rights has really been
something that I've had much more
opportunity to be actively involved in
and I have spent the time since joining
WID building a strategic planning process
and supporting the organization to
establish new priorities, taking a look at
the organization's mission, and very
recently establishing for particular areas
of focus for the organization as we move
forward. Thank you Marcie. Excellent, okay
I apologize that my neighbor is chipping a
lot of brush today, so it's making a lot
of extra sound whenever I unmute, but
don't worry, it won't interfere with your
recording. Okay, so the first question is
about the past. So tell of your first
memory realizing that there were
accessibility issues, discrimination, or
lack of inclusion. What is your personal
story or connection with the American with
Disabilities Act? What do you remember
about the day that it was signed, if
applicable? And what was the impact on
you and on others? Remember to tap
something so that the camera shifts to you
before you start.
I first became aware of disability at a
very young age. I had a best friend in
first grade. His name was Gregory, and he
and I were just wonderful friends. We
spent a lot of time together, and then all
of a sudden, one day Gregory was gone
and I didn't know what happened to him or
where he went and it wasn't until many
years later that I found out that Gregory
had Down Syndrome, and he had been removed
from my kindergarten class and first
grade I think it was at that point. And
apparently he had been sent to some other
school, somewhere. And the loss of his
friendship was pretty surprising and
I didn't understand you know where he went
Looking back on it, it was kind of
peculiar that we didn't just get to still
be friends 'cause he didn't move away, he
just stopped going to my school. But I
remember just being confused and then
over the next number of years, I lived in
a town that was also the home of Save the
Children, and I was always very interested
in the work that Save the Children was
doing and I am embarrassed to admit that
my earliest involvement in humanitarian
work was from a very charity-model
approach, and I spent a lot of my
childhood raising money for Save the
Children and getting involved in other
activities that were very much following
the charity-pity model and certainly not a
model making space for and lifting
up other people with disabilities. The
onset of my disability wasn't until many
years later, but when I was in high school
I had the, I had a requirement to do...
I can't even remember what it's called now
community service! Sorry. I had the
opportunity to do--I had an obligation
to do community service and I started off
This was the year of the first Earth Day
and I started crushing glass at the local
recycling center and it turned out that
that was really boring but lots of my
classmates were volunteering at a state
institution for people with disabilities
and I joined them once a week and looking
back on it again, it was pretty shocking
that at 13 years old, I was assigned as
the teacher of a classroom of 30 adults
who had never had the opportunity to
really attend school and they now had a
13-year old teacher once a week. Needless
to say, I learned way more from them than
they learned from me, but we had a lot of
fun and many of them became friends very
much along the rest of my path and
unfortunately, some of them are no longer
alive but there are a couple of people who
are still very much a part of my life and
fortunately, they were successful in
liberating themselves from that state
institution. And so they and many others
taught me a lot. But the real pivotal
experience for me, I was working back at
that state institution, it was my first
paid job in disability services and I had
been hired to work in what was called a
"cottage" for 40 women with intellectual
disabilites and this "cottage" was on
beautiful grounds but the women lived in a
building 20 on one side, 20 on the other
side and my responsibilities included
assisting them in bathing and getting
dressed and in eating. Many of them were
unable to feed themselves. Some because
they had never been given the opportunity,
others because of their physical
disability and a lack of any sort of
adapted utensils or other equipment.
So as I was feeding people, the sort of
routine was the same every day. A plate
would come out, and there would be 3
mounds of food on the plate. One mound was
always brown, one mound was always
green, and one mount was always white.
You know the meat, the vegetable, and the
starch. And I know that people like to
eat their meals in different ways. There
would also be a dessert every day, jello or
ice cream, again always in a mound.
And so I would spend time with each of the
individuals who were having their meal
and would sort of be working together,
trying to figure out if they preferred to
have, to eat their dessert first? Some
people liked to do that. Did they prefer a
little bit of the brown and a little bit
of the white all on the same fork? Did
they not want their food touching? You
know and I would sort of work back and
forth with them to try and figure out what
their preference was and I got in trouble
because I was spending too much time
and ultimately, I was moved to a different
position because I was taking too much
time giving people an opportunity to make
some choices and express some preferences.
So that was extremely pivotal and in many
ways you know, those early early
experiences have really totally driven who
I am and what I believe all these years
later. In terms of the Americans with
Disability Act, I had a very close
personal experience with what was then
called "public law 94142" the Education of
All Handicapped Act, later on renamed
Individuals with Disabilities Act, IDEA
and I had a very personal family
experience with IDEA and became aware of
legislative initiatives and how the IDEA
had just been passed. And then I started
to become more aware of the work being
done. And this was back in the 70s and
work being done of other legislative
initiatives and the 504, the passage of
the Rehabilitation Act, followed by the
504 sit-in in San Francisco to get the
regulations put in place. That really
caught my attention and between the little
bits of information I was getting there
and the work I was doing and then
becoming a full-time advocate going to
work for an independent living center in
1982, I then became extremely involved
in systems change and how to develop
policy, how to organize, how to support
the rights and voices and preferences of
other people and because I lived in
Connecticut and the original author of
the Americans with Disability Act, the
first time that it was introduced was
Senator Weicker of Connecticut, and
Senator Weicker, father of a great young
man who had Down Syndrome, Senator
Weicker was very involved with the
disability advocacy community in
Connecticut, and I then had the incredible
opportunity to go to Boston and testify
at one of the Congress major hearings--
field hearings on the Americans with
Disability Act. So you know of course the
first time around, the bill didn't pass
but we were revved up and in the
passage of the ADA, in the period in which
once the bill was re-introduced and votes
were organizing, I remember that we had
stacks and stacks and stacks of bright
pink postcards and we were organizing
folks across the states to develop, to
sign those postcards supporting the
passage of the ADA and then you know this
was sort of a wonderful but maybe
misleading experience, we actually were
successful. The bill got passed! And I
remember thinking "Oh, well this wasn't
that hard. I mean, you know, we had to go
at it twice, but well this wasn't so hard.
Let's take on some more legislation!" And
it turns out that it wasn't as easy
as it looked to me. It wasn't just about
hot pink postcards and meetings and
marches--that all helped but even that
sometimes these days, it doesn't seem to
be enough to change policy. So that is my
earliest journey to 1990.
Thank you Marcie. Okay we're going to the
present now. So just so you know, I do
have another interview at 2:00, so we're
going to have 3 more sections: the present
the future, and the call to action. So
just to pace yourself within the--thank
you. So within the present, has the ADA
made a difference? Tell us about your
"aha" moment that told you that the ADA is
or is not making a difference and to what
extent based on your passions and areas of
expertise, where do you see or not see the
impact of the ADA?
So the ADA has had a huge
and sweeping impact
and it's important for me
as I begin to talk
about the current day as we're embarking
on ADA 30 it's really important to start
with how much things absolutely have
changed, certainly some of the architectural
barrier removal efforts, some of the
signficant improvements in equally effective
communications, some of the requirements
around programs, all of those have significantly
changed most often--can't even say--often
there's been really great initatives over
the years but we've always had to maintain
a relentless battle to not let anything slip
to not let anything lose any sort of momentum
towards accessiblity, if we look away for a minute
our rights will be swept away from us, and I can
certainly talk about about the very present day
and what I have to say about where
we are today is not great and I want to take a little
more time to call out the significant progress
in so many aspects of daily life in which we can
call out failures of ADA compliance,
enforcement of the law but oftentimes
in comparison to the examples to where
it's working, so when transportation
is not accessible, we're calling it out
because we know the good and promising
practices that have been in place
for transportation accessiblity
make the failures so more egregious
in housing, in employment, in the kinds of
assistive devices that are accessible, the
universal design of places and things
all of that points to examples of where we
are getting it right and in stark contrast
where we are egregiously getting it wrong
and just recently I have led my organizations
involvement in petiton to US Dept of Health and Human
Services be immediately relocated out of nursing
homes and other congregate settings due to the
horrific circumstances in those congregate
settings due to covid-19 and the failure to provide
appropriate protections for people with disabilities
in instutiotional settings
in the ADA back in 1990 gave people with
disabilities significant rights
even when challenged in 1999 the Olmstead
case, which was a Georgia case, two women
Lois and Elaine, Lois Curtiss an incredible
woman I had a chance to be with on a number
of occassions determined they had a right to
live in a circumstance most appropriate to
their needs, the decision went all the way to
the Supreme Court and I was among those who
slept outside the Supreme Court the night
before their case was heard and I was among
the folks who celebrated out in front of
the Supreme Court the day that case came
down in favor of Lois and Elaine's right,
and 10s of 1000's, millions of people with
disabilities to live in the most integrated setting
appropriate to their needs. Given
we are 21 years after that decision, yesterday
the American Civil Liberties Union submitted
a petition and the World Institute of
Disability joined a number of other disability
organizations bringing that petition
demanding that people with disabilities
relocate out of these congregate settings
10s of 1000's of people have died in
the last 100 days, the genocide
of people with disabilities because of
the failures of implementation of that
Olmstead decision and the failures of our
government to provide the kind of supports
and services to enable people with disabilities
to live safely and with the support they
need in the community