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