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 workign 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 to 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 been 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 just
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 that uh 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 teaher 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 very much a part of my life and
fortunately, they were successful in
liberating themselves from that state
instituation. 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 liked to
eat their meals in different ways. There
would also be a dessert every day, jello or
ice cream, you know, 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 the 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
regulation 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