You'll see in the corner the record button
So you should see that it's recording now,
and I am 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 a 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 recover and mitigation.
So one last piece since I've been with
the World Institute on Disabilities since last September,
my ongoing focus on global disability rights
has really been something that I've had
much more opportunity to be actively
involved in and I have spent the time since joining
with building a strategic planning process
and supporting the organization to establish new priorities
taking a look at the organizations 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 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 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 a very charity-model approach.
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 on set of my disability wasn't until many years later,
but when I was in high school, I had a
requirement to do community service and I
had an opportunity to do, had an obligation
to do community service and we started off.
This was the year of the first Earth Day
and I started crushing glass at the local
recycling center. It turned out that it
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, looking back on it again it was
pretty shocking 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 now had
a 13 year old teacher once a week.
Needless to say, I learned way more from them
then they learned from me, but we had a lot of fun
and many of them became friends, you know, very much along the rest of my path.
Unfortunately, some of them are no longer alive
but there are a couple of people who are
still very much apart of my life, and
fortunately they were successful in
liberating themselves from that state
institution 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. 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.
This cottage was on beautiful ground, but
the women lived in a building with 20 on
one side and 20 on the other side.
My responsibilities included assisting them
in bathing and getting dressed and eating
many of them were unable to feed themselves
some because they never been given
the opportunity and others because of
their physical disability and a lack of any
supportive or adaptive utensils or other equipment,
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 always brown
One mound was always green
One mound was always white, you know the meat
the vegetable, and the starch, and I know that
people like to eat their meals different ways, there would
also be a dessert everyday, a jello, ice cream again in a mound.
I would spend time with each of the individuals
who were having their meal, and would sort of be kind of working
together trying to figure out, did they
prefer to eat their desert first?
And people like to do that, did they prefer
a little bit of brown and a little bit of white
all on the same fork? Did they not want
them touching, and you know I would sort of
work back and forth with them to try to
figure out what their preference was and
I got in trouble because I was spending
to much time and ultimately, I was moved
to a different position because I was taking
to much time giving people and
opportunity to make some choices and
express some preferences. 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 of these years later.
In terms of the American's with Disabilities Act
I had very close personal experience with
what was then called public law 94142:
The Education of All Handicaps Act,
later on renamed The 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.
Then I started to become more aware of the work
being done, this was back int he 70's. Working
being done on some other legislative initatives, the 504
The Passage of Rehabilitation Act, followed by the 504
sit-in in San Francisco to get the
regulations put in place. That really caught my attention,
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, voices and preferences of other
people and because I lived in Connecticut and the
original author of the American's with
Disabilities Act, the first time the bill
was introduced was senator Will Weiker
of Connecticut and Senator Weiker, father
of a great young man who had Down Syndrome
Senator Welker was very involved with
the disability advocacy community in Connecticut
and I then had the incredible opportunity to
go to Boston and testify and on of the
Congressman Major Owens field of hearings
on the American's with Disabilities Act so
of course that first time around the bill
didn't pass. But boy oh boy, were we revved up
in the passage of the ADA, in the period of which
once the bill was reintroduced
and folks were organizing, I remember that we had
stacks and stacks and stacks of bright pink
post cards, and we were organizing folks across the state
to develop, to sign those post cards supporting
passage of the ADA and then, this was sort
of a wonderful but maybe a miss leading experience
we actually were successful! The bill got
passed, I remember thinking oh well this wasn't that hard,
we had to go at it twice but this wasn't so hard!
Let's take on some more legislation. So
turns out it wasn't as easy as it looked to me
It wasn't just about hot pink post cards, and meetings, and marches
that all helped but even that sometimes
these days doesn't seem to be enough to change policy.
That's my earliest journey to 1990.
Thank you Marcie, okay were going to present now
just so you know I do have another interview at 2
we are going to have three more sections.
The present, the future and the call to
action, so just to pace yourself within those
So the present, has the ADA made a difference?
Tell us about your "Aha" moment that told you
that the ADA is or is not making a difference
and to what extent based on your passions
and area of expertise, where you see or
not see the impact of the ADA.
So the ADA has had a huge and sweeping impact
and I... Its important for me to begin as I talk about
the present day as were embarking on ADA 30.
Its really important to start with, how
much things absolutely have changed, and certainly some
of the architectural barrier removal efforts
some of the significant improvements in
effective, equally effective communication
some of the requirements around programs
All of those have significantly changed
most, I can't even say most of the time... often.
There have been many great initiatives
over the years, but we always had to
maintain a relentless battle to, to not let
anything slip, to not lose and sort of momentum,
towards accessibility. If we look away for
a minute, our rights will be swept away
from us, I can certainly talk about the
very present day, and what I have to say
about where we are today, is not
great, so I do want to take a little bit
more time to call out the significant
progress in so many aspects of daily life,
in which we can call out failures of ADA
compliance, enforcement of the law.
But it is often times in comparison to
the examples of where it's working.
So when transportation is not accessible
we're calling it out because we know the
good and the promising practices that have
been in place for transportation accesabilty
Make the failures so much more egregious.
In housing, in employment, in the kinds
of assistive devices that are available
the universal design of places and things,
all of that points to the examples of where
we are getting it right, In stark contrast
the areas where we are getting it egreigously
getting it wrong. I have to say that
just very recently, I have lead my
organization involvement in a petition to
the U.S Department of Health and Human
Services, demanding that people with
disabilities be immediately located
out of nursing homes and other congregate
settings due to the horrific circumstances
in those congregate settings, to Covid-19
and the failure to provide appropriate
protections for people with disabilities
and institutional settings. The ADA back in 1990
very clearly gave people with disabilities
significant rights, and even when
challenged in 1999, the homestead case
which was a Georgia case, and two women
who Lois and Elaine, Lois Curtis an
incredible woman, I have had the
pleasure of being with on a number of
occasions. The two of them demanded that
they had a right to live in the most intergraded
setting appropriate to their needs.
The decision, the case went all the way to
the Supreme Court, and I was among
those who slept out on the steps of
the Supreme Court on the night before
their case was heard. I was among the
folks who celebrated out in front of the
Supreme Court on the day that decision
came down in favor of Lois and Elaine
right and the rights of thousands, tens of
thousands, millions of people with
disabilities to be, to live in the most
intergraded setting appropriate to their
needs. Given that we are 21 years after
that decision, yesterday the American
Civil Liberties Union submitted a petition
and the World Institute on Disability joined
a number of disability organizations
in a bringing that petition, demanding
that people with disabilities be immediately
relocated out of these congregate settings.
Tens of thousands of people have died
in the last hundred days, the genocide of
people with disabilities because of the
failures of implementation of that
homestead decision and the failures of our
government to provide that kind of support
and services that enable people with disabilities
to live safely and and with the support
they need in place in the community,
very infuriatingly, our continued persistent
call for people with disabilities to be
adequately served in these disasters
have been ignored and the bottom line
has been that again, over the last hundred days
tens of thousands of people with disabilities
have died, and when I was called on
saying that those were people with disabilities
I have had conversations with a number of
senior government officials who,
"why are you saying people with disabilities"
these were old people with underlying conditions
living in nursing homes, and long term care
facilities, look you don't go to a nursing home
because you are old. You go to a nursing home because
you have a disability and the supports and
services you need to stay in the community
have not been given to you, and that majority
of some would say of all those deaths in
congregate facilites are people with disabilities.
Most of them black and brown and people
living in poverty, and the failures of
American's with Disabilities Act, the homestead decision and
our governments will to monitor and force
this law and the rehabilitation act have a
devastating impact on where we are today
and the depth of many of our siblings,
Without out end in sight.
Thank you Marcie, okay so next onto the
future. With the work you have been doing
you have seen a lot in terms of progress and barriers.
If you could pick one thing to change or that needs
to occur to have access and equality,
I know that is hard, one thing. To have
access and equality present in the lives
of people with disabilities, what would that be?
The one thing that must happen
people with disabilities have civil rights
protections by law. The one thing that must happen
is that their rights are monitored and enforced
without exception. Following the law is not
enough, we need universal designs to be
the standard, we need accessibility
and the accommodation to be readily available.
But we must have monitoring and enforcement.
Every federal dollar is supposed to be
spent in compliance with the rehabilitation act
and between the rehab act and what the ADA require.
There should be no room for people with
those civil rights protections to be repeatedly denied
and unable to fully participate in home
and community life. Monitoring and enforcement
must be the floor, the ceiling. But enforcing
these civil rights laws is absolutely
the floor. Thank you
So what can we do? What steps can we as community members
take right now?
So what we can do right now is
one of my favorite sayings is
"never give up, never give in"
another favorites is
"nothing about us, without us"
We as disability community leaders, need
to stick together, we need to center our work
around people who are multiple marginalized
excluded, we need to be sure that
we are not wasting our time with in fighting
and with the kind of divisive childish behavior
that some folks are still stuck on engaging in.
We absolutely must reach a hand forward,
reach a hand back, stick together and
continue relentlessly to work towards
the realization of the goal that the ADA
was written around and so many
of our siblings have fought so very hard
for, we've lost a bunch of those hard working
visionary leaders, many of them have been
lost in recent years, some have been lost
along the way. We have an incredible
legacy to care for, we have huge
opportunities to work towards. Technology
has the potential of leveling the
playing field if in fact people have real access
and the World Institute on Disability
and our commitment to work in partnership
with other disability lead organizations and our allies
to make communities stronger, more resilient for
the whole community. When we get it right
for people with disabilities, I think the
whole community not only benefits is stronger
for our leadership, our contributions,
our expertise in what it takes to make daily life
work for everybody.
Excellent thank you.