Marcie Roth

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