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

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,

And actually, 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 in services

for people living in residential programs early in my career

with people in,

children in school settings,

people in vocational rehabilitation,

and then people in community living environments,

that 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 e actively involved in

and I have spent the time since joining

WID building a strategic planning process

and supporting the organizations to establish new priorities,

taking a look at the organization’s mission

and very recently establishing four 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 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

to the American’s 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 the 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’s kind of peculiar that we didn’t get to still be friends

‘cause he didn’t move away, he just stopped going to my school.

But, I...

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, you know, 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 of

making space for and supporting and lifting up other people with disabilities.

the onset of my disability wasn't until
many years later,

but when I was in highschool I had a requirement

to do community service I had and opportunity to do

or 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. I turned out

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 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 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 institution, so they and

many others taught me a lot but the real

pivotal experience for me, I was working back

at that state institution. This 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 disabilities

and this cottage was on beautiful grounds but the women lived in a building with 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 and some

because of their physical disability and a

lack of any sort of adaptive utensils. So

as I was feeding people it was the same every

day. A plate would come out and there were

3 mounds of food on the plate. One mound

was alway brown one mound was always green

and one mound was always white. The meat

the vegetable and the starch, and I know that

people like to eat their meal different

ways. There would also be a desert every

day, a jello or ice cream, again in a

mound. I would spend time with each of

the individuals who were having their meal

and we'd be working together trying to

figure out, did they prefer to eat their desert first?

Did they prefer

a little bit of the brown and a little

bit of the white on the fork? Did they not

want their food touching? And so I would

work back and forth with them to try to

figure out what their preference was and

I got in trouble 'cause 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 preferences