9:59:59.000,9:59:59.000
You'll see in the corner the record button

9:59:59.000,9:59:59.000
So you should see that it's recording now,

9:59:59.000,9:59:59.000
and I'm going to mute myself now, and

9:59:59.000,9:59:59.000
you'll go ahead and do your intro. Thank

9:59:59.000,9:59:59.000
you Marcie. Hi there, I'm Marcie Roth, and

9:59:59.000,9:59:59.000
I have been workign in disability rights

9:59:59.000,9:59:59.000
for my whole adult life, since I was a

9:59:59.000,9:59:59.000
freshman in high school. I am currently

9:59:59.000,9:59:59.000
the executive director and CEO of the

9:59:59.000,9:59:59.000
World Institute on Disability and I have

9:59:59.000,9:59:59.000
been working over the years and services

9:59:59.000,9:59:59.000
for people living in residential programs

9:59:59.000,9:59:59.000
early in my career with people in with

9:59:59.000,9:59:59.000
children in school settings, people in

9:59:59.000,9:59:59.000
vocational rehabilitation, and then people

9:59:59.000,9:59:59.000
in community living environments, then

9:59:59.000,9:59:59.000
along the way, I became very involved in

9:59:59.000,9:59:59.000
disability rights and very involved in

9:59:59.000,9:59:59.000
the early days of advocacy before

9:59:59.000,9:59:59.000
the ADA was introduced. And then I worked

9:59:59.000,9:59:59.000
for disability advocacy organizations

9:59:59.000,9:59:59.000
almost ever since. In addition to my own

9:59:59.000,9:59:59.000
disability, I'm also the parent of two now

9:59:59.000,9:59:59.000
adults with disabilities. My husband also

9:59:59.000,9:59:59.000
has a disability and much of my family

9:59:59.000,9:59:59.000
also happen to be people with disabilities

9:59:59.000,9:59:59.000
so disability rights is just part of

9:59:59.000,9:59:59.000
everything I am and most everything I do.

9:59:59.000,9:59:59.000
I did spend from 2001 and onward focusing

9:59:59.000,9:59:59.000
very much on what happens to people

9:59:59.000,9:59:59.000
with disabilities before, during, and

9:59:59.000,9:59:59.000
after disasters. And that's been a real

9:59:59.000,9:59:59.000
particular laser focus of mine ever since

9:59:59.000,9:59:59.000
and in fact, I've had the opportunity

9:59:59.000,9:59:59.000
as an appointee in the Obama

9:59:59.000,9:59:59.000
administration to spend just about 8 years

9:59:59.000,9:59:59.000
at FEMA, establishing FEMA's Office of

9:59:59.000,9:59:59.000
Disability Integration Coordination and

9:59:59.000,9:59:59.000
building a cadre of disability experts of

9:59:59.000,9:59:59.000
the same pond, supporting governors and

9:59:59.000,9:59:59.000
emergency managers and most particularly

9:59:59.000,9:59:59.000
engaging people with disabilities and

9:59:59.000,9:59:59.000
disability organizations in emergency

9:59:59.000,9:59:59.000
preparedness and throughout disaster

9:59:59.000,9:59:59.000
response recovery and mitigation. So one

9:59:59.000,9:59:59.000
last piece since I've been with the World

9:59:59.000,9:59:59.000
Institute on Disability since last

9:59:59.000,9:59:59.000
September, my ongoing focus on global

9:59:59.000,9:59:59.000
disability rights has really been

9:59:59.000,9:59:59.000
something that I've had much more

9:59:59.000,9:59:59.000
opportunity to been actively involved in

9:59:59.000,9:59:59.000
and I have spent the time since joining

9:59:59.000,9:59:59.000
WID building a strategic planning process

9:59:59.000,9:59:59.000
and supporting the organization to

9:59:59.000,9:59:59.000
establish new priorities, taking a look at

9:59:59.000,9:59:59.000
the organization's mission, and very

9:59:59.000,9:59:59.000
recently establishing for particular areas

9:59:59.000,9:59:59.000
of focus for the organization as we move

9:59:59.000,9:59:59.000
forward. Thank you Marcie. Excellent, okay

9:59:59.000,9:59:59.000
I apologize that my neighbor is chipping a

9:59:59.000,9:59:59.000
lot of brush today, so it's making a lot

9:59:59.000,9:59:59.000
of extra sound whenever I unmute, but

9:59:59.000,9:59:59.000
don't worry, it won't interfere with your

9:59:59.000,9:59:59.000
recording. Okay, so the first question is

9:59:59.000,9:59:59.000
about the past. So tell of your first

9:59:59.000,9:59:59.000
memory realizing that there were

9:59:59.000,9:59:59.000
accessibility issues, discrimination, or

9:59:59.000,9:59:59.000
lack of inclusion. What is your personal

9:59:59.000,9:59:59.000
story or connection with the American with

9:59:59.000,9:59:59.000
Disabilities Act? What do you remember

9:59:59.000,9:59:59.000
about the day that it was signed, if

9:59:59.000,9:59:59.000
applicable? And what was the impact on

9:59:59.000,9:59:59.000
you and on others? Remember to tap

9:59:59.000,9:59:59.000
something so that the camera shifts to you

9:59:59.000,9:59:59.000
before you start.

9:59:59.000,9:59:59.000
I first became aware of disability at a

9:59:59.000,9:59:59.000
very young age. I had a best friend in

9:59:59.000,9:59:59.000
first grade. His name was Gregory, and he

9:59:59.000,9:59:59.000
and I were just wonderful friends. We

9:59:59.000,9:59:59.000
spent a lot of time together, and then all

9:59:59.000,9:59:59.000
of a sudden, one day Gregory was gone

9:59:59.000,9:59:59.000
and I didn't know what happened to him or

9:59:59.000,9:59:59.000
where he went and it wasn't until many

9:59:59.000,9:59:59.000
years later that I found out that Gregory

9:59:59.000,9:59:59.000
had Down Syndrome, and he had been removed

9:59:59.000,9:59:59.000
from my kindergarten class and first

9:59:59.000,9:59:59.000
grade I think it was at that point. And

9:59:59.000,9:59:59.000
apparently he had been sent to some other

9:59:59.000,9:59:59.000
school, somewhere. And the loss of his

9:59:59.000,9:59:59.000
friendship was pretty surprising and

9:59:59.000,9:59:59.000
I didn't understand you know where he went

9:59:59.000,9:59:59.000
Looking back on it, it was kind of

9:59:59.000,9:59:59.000
peculiar that we didn't just get to still

9:59:59.000,9:59:59.000
be friends 'cause he didn't move away, he

9:59:59.000,9:59:59.000
just stopped going to my school. But I

9:59:59.000,9:59:59.000
remember just being confused and then just

9:59:59.000,9:59:59.000
over the next number of years, I lived in

9:59:59.000,9:59:59.000
a town that was also the home of Save the

9:59:59.000,9:59:59.000
Children, and I was always very interested

9:59:59.000,9:59:59.000
in the work that Save the Children was

9:59:59.000,9:59:59.000
doing and I am embarrassed to admit that

9:59:59.000,9:59:59.000
my earliest involvement in humanitarian

9:59:59.000,9:59:59.000
work was from a very charity-model

9:59:59.000,9:59:59.000
approach, and I spent a lot of my

9:59:59.000,9:59:59.000
childhood raising money for Save the

9:59:59.000,9:59:59.000
Children and getting involved in other

9:59:59.000,9:59:59.000
activities that were very much following

9:59:59.000,9:59:59.000
the charity-pity model and certainly not a

9:59:59.000,9:59:59.000
model that uh making space for and lifting

9:59:59.000,9:59:59.000
up other people with disabilities. The

9:59:59.000,9:59:59.000
onset of my disability wasn't until many

9:59:59.000,9:59:59.000
years later, but when I was in high school

9:59:59.000,9:59:59.000
I had the, I had a requirement to do...

9:59:59.000,9:59:59.000
I can't even remember what it's called now

9:59:59.000,9:59:59.000
community service! Sorry. I had the

9:59:59.000,9:59:59.000
opportunity to do--I had an obligation

9:59:59.000,9:59:59.000
to do community service and I started off

9:59:59.000,9:59:59.000
This was the year of the first Earth Day

9:59:59.000,9:59:59.000
and I started crushing glass at the local

9:59:59.000,9:59:59.000
recycling center and it turned out that

9:59:59.000,9:59:59.000
that was really boring but lots of my

9:59:59.000,9:59:59.000
classmates were volunteering at a state

9:59:59.000,9:59:59.000
institution for people with disabilities

9:59:59.000,9:59:59.000
and I joined them once a week and looking

9:59:59.000,9:59:59.000
back on it again, it was pretty shocking

9:59:59.000,9:59:59.000
that at 13 years old, I was assigned as

9:59:59.000,9:59:59.000
the teacher of a classroom of 30 adults

9:59:59.000,9:59:59.000
who had never had the opportunity to

9:59:59.000,9:59:59.000
really attend school and they now had a

9:59:59.000,9:59:59.000
13-year old teaher once a week. Needless

9:59:59.000,9:59:59.000
to say, I learned way more from them than

9:59:59.000,9:59:59.000
they learned from me, but we had a lot of

9:59:59.000,9:59:59.000
fun and many of them became friends very

9:59:59.000,9:59:59.000
much along the rest of my path and

9:59:59.000,9:59:59.000
unfortunately, some of them are no longer

9:59:59.000,9:59:59.000
alive but there are a couple of people who

9:59:59.000,9:59:59.000
are very much a part of my life and

9:59:59.000,9:59:59.000
fortunately, they were successful in

9:59:59.000,9:59:59.000
liberating themselves from that state

9:59:59.000,9:59:59.000
instituation. And so they and many others

9:59:59.000,9:59:59.000
taught me a lot. But the real pivotal

9:59:59.000,9:59:59.000
experience for me, I was working back at

9:59:59.000,9:59:59.000
that state institution, it was my first

9:59:59.000,9:59:59.000
paid job in disability services and I had

9:59:59.000,9:59:59.000
been hired to work in what was called a

9:59:59.000,9:59:59.000
cottage for 40 women with intellectual

9:59:59.000,9:59:59.000
disabilites and this cottage was on

9:59:59.000,9:59:59.000
beautiful grounds but the women lived in a

9:59:59.000,9:59:59.000
building 20 on one side, 20 on the other

9:59:59.000,9:59:59.000
side and my responsibilities included

9:59:59.000,9:59:59.000
assisting them in bathing and getting

9:59:59.000,9:59:59.000
dressed and in eating. Many of them were

9:59:59.000,9:59:59.000
unable to feed themselves. Some because

9:59:59.000,9:59:59.000
they had never been given the opportunity.

9:59:59.000,9:59:59.000
Others because of their physical

9:59:59.000,9:59:59.000
disability and a lack of any sort of

9:59:59.000,9:59:59.000
adapted utensils or other equipment.

9:59:59.000,9:59:59.000
So as I was feeding people, the sort of

9:59:59.000,9:59:59.000
routine was the same every day. A plate

9:59:59.000,9:59:59.000
would come out, and there would be 3

9:59:59.000,9:59:59.000
mounds of food on the plate. One mound was

9:59:59.000,9:59:59.000
always brown, one mound was always

9:59:59.000,9:59:59.000
green, and one mount was always white.

9:59:59.000,9:59:59.000
You know the meat, the vegetable, and the

9:59:59.000,9:59:59.000
starch. And I know that people liked to

9:59:59.000,9:59:59.000
eat their meals in different ways. There

9:59:59.000,9:59:59.000
would also be a dessert every day, jello or

9:59:59.000,9:59:59.000
ice cream, you know, always in a mound.

9:59:59.000,9:59:59.000
And so I would spend time with each of the

9:59:59.000,9:59:59.000
individuals who were having their meal

9:59:59.000,9:59:59.000
and would sort of be working together,

9:59:59.000,9:59:59.000
trying to figure out if they preferred to

9:59:59.000,9:59:59.000
have, to eat their dessert first? Some

9:59:59.000,9:59:59.000
people liked to do that. Did they prefer a

9:59:59.000,9:59:59.000
little bit of the brown and a little bit

9:59:59.000,9:59:59.000
of the white all on the same fork? Did

9:59:59.000,9:59:59.000
they not want their food touching? You

9:59:59.000,9:59:59.000
know and I would sort of work back and

9:59:59.000,9:59:59.000
forth with them to try and figure out what

9:59:59.000,9:59:59.000
their preference was and I got in trouble

9:59:59.000,9:59:59.000
because I was spending too much time

9:59:59.000,9:59:59.000
and ultimately, I was moved to a different

9:59:59.000,9:59:59.000
position because I was taking too much

9:59:59.000,9:59:59.000
time giving people the opportunity to make

9:59:59.000,9:59:59.000
some choices and express some preferences.

9:59:59.000,9:59:59.000
So that was extremely pivotal and in many

9:59:59.000,9:59:59.000
ways you know, those early early

9:59:59.000,9:59:59.000
experiences have really totally driven who

9:59:59.000,9:59:59.000
I am and what I believe all these years

9:59:59.000,9:59:59.000
later. In terms of the Americans with

9:59:59.000,9:59:59.000
Disability Act, I had a very close

9:59:59.000,9:59:59.000
personal experience with what was then

9:59:59.000,9:59:59.000
called "public law 94142" the education of

9:59:59.000,9:59:59.000
all handicapped act, later on renamed

9:59:59.000,9:59:59.000
Individuals with Disabilities Act, IDEA

9:59:59.000,9:59:59.000
and I had a very personal family

9:59:59.000,9:59:59.000
experience with IDEA and became aware of

9:59:59.000,9:59:59.000
legislative initiatives and how the IDEA

9:59:59.000,9:59:59.000
had just been passed. And then I started

9:59:59.000,9:59:59.000
to become more aware of the work being

9:59:59.000,9:59:59.000
done. And this was back in the 70s and

9:59:59.000,9:59:59.000
work being done of other legislative

9:59:59.000,9:59:59.000
initiatives and the 504, the passage of

9:59:59.000,9:59:59.000
the Rehabilitation Act, followed by the

9:59:59.000,9:59:59.000
504 sit-in in San Francisco to get the

9:59:59.000,9:59:59.000
regulation put in place. That really

9:59:59.000,9:59:59.000
caught my attention and between the little

9:59:59.000,9:59:59.000
bits of information I was getting there

9:59:59.000,9:59:59.000
and the work I was doing and then

9:59:59.000,9:59:59.000
becoming a full-time advocate going to

9:59:59.000,9:59:59.000
work for an independent living center in

9:59:59.000,9:59:59.000
1982, I then became extremely involved

9:59:59.000,9:59:59.000
in systems change and how to develop

9:59:59.000,9:59:59.000
policy, how to organize, how to support

9:59:59.000,9:59:59.000
the rights and voices and preferences of

9:59:59.000,9:59:59.000
other people and because I lived in

9:59:59.000,9:59:59.000
Connecticut and the original author of

9:59:59.000,9:59:59.000
the Americans with Disability Act. The

9:59:59.000,9:59:59.000
first time that it was introduced was

9:59:59.000,9:59:59.000
Senator Weicker of Connecticut, and

9:59:59.000,9:59:59.000
Senator Weicker, father of a great young

9:59:59.000,9:59:59.000
man who had Down Syndrome, Senator

9:59:59.000,9:59:59.000
Weicker was very involved with the

9:59:59.000,9:59:59.000
disability advocacy community in

9:59:59.000,9:59:59.000
Connecticut, and I then had the incredible

9:59:59.000,9:59:59.000
opportunity to go to Boston and testify

9:59:59.000,9:59:59.000
at one of the congress major hearings--

9:59:59.000,9:59:59.000
field hearings on the Americans with

9:59:59.000,9:59:59.000
Disability Act. So you know of course the

9:59:59.000,9:59:59.000
first time around, the bill didn't pass

9:59:59.000,9:59:59.000
but boy oh boy were we round up and in the

9:59:59.000,9:59:59.000
passage of the ADA, in the period in which

9:59:59.000,9:59:59.000
once the bill was re-introduced and votes

9:59:59.000,9:59:59.000
were organizing, I remember that we had

9:59:59.000,9:59:59.000
stacks and stacks and stacks of bright

9:59:59.000,9:59:59.000
pink postcards and we were organizing

9:59:59.000,9:59:59.000
folks across the states to develop, to

9:59:59.000,9:59:59.000
sign those postcards supporting the

9:59:59.000,9:59:59.000
passage of the ADA and then you know this

9:59:59.000,9:59:59.000
was sort of a wonderful but maybe

9:59:59.000,9:59:59.000
misleading experience, we actually were

9:59:59.000,9:59:59.000
successful. The bill got passed! And I

9:59:59.000,9:59:59.000
remember thinking "Oh, well this wasn't

9:59:59.000,9:59:59.000
that hard. I mean, you know, we had to go

9:59:59.000,9:59:59.000
at it twice, but well this wasn't so hard.

9:59:59.000,9:59:59.000
Let's take on some more legislation!" And

9:59:59.000,9:59:59.000
well it turns out that it wasn't as easy

9:59:59.000,9:59:59.000
as it looked to me. It wasn't just about

9:59:59.000,9:59:59.000
hot pink postcards and meetings and

9:59:59.000,9:59:59.000
marches--that all helped but even that

9:59:59.000,9:59:59.000
sometimes these days, it doesn't seem to

9:59:59.000,9:59:59.000
be enough to change policy. So that is my

9:59:59.000,9:59:59.000
earliest journey to 1990.

9:59:59.000,9:59:59.000
Thank you Marcie. Okay we're going to the

9:59:59.000,9:59:59.000
present now. So just so you know, I do

9:59:59.000,9:59:59.000
have another interview at 2:00, so we're

9:59:59.000,9:59:59.000
going to have 3 more sections: the present

9:59:59.000,9:59:59.000
the future, and the call to action. So

9:59:59.000,9:59:59.000
just to pace yourself within the--thank

9:59:59.000,9:59:59.000
you. So within the present, has the ADA

9:59:59.000,9:59:59.000
made a difference? Tell us about your

9:59:59.000,9:59:59.000
"aha" moment that told you that the ADA is

9:59:59.000,9:59:59.000
or is not making a difference and to what

9:59:59.000,9:59:59.000
extent based on your passions and areas of

9:59:59.000,9:59:59.000
expertise, where do you see or not see the

9:59:59.000,9:59:59.000
impact of the ADA?

9:59:59.000,9:59:59.000