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 bug we had a lot of fun and many of them became
friends 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
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 others
because of their physical disability and
a lack of any sort of adaptive utensils or adaptive equipment
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.and 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.
So that was extremely pivitol, and in many ways,
those early experiences have really totally
driven who I am and what
I believe all these years later.
In terms of the Americans with Disabilities Act
I had a very close personal experience with
what was then called Public Law 94142:
The Education of All Handicapped Act,
later on renamed The Individuals with Disabiities 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
and then I started to become more aware
of the work being done, back in the 70's.
Work being done on some other legislative
initiatives, the 504, the passage of the
Rehabilitation Act, followed by the 504
sit-in in San Francisco to get the
regulations put in place. That really
caught my attention. And between the
little bits of information I was getting
there and the work that I was doing
and then becomming 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 and support the
rights, voices and preferences of other
people and because I lived in Connecticut and
the original author of the Americans 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 Weiker
was very involved with the disability
advocacy community in Connecticut and
I then had the incredible opportunity to
go to Boston and testify at one of
the, Congressman Major Owens feild hearings
on the Americans with Disabiities Act so
of course that first time around
the bill didn't pass.
But boy oh boy, were we revved up
and in the passage of the ADA
...
In the period in which, once the bill
was reintroduced and folks were organizing
I remember that we had stacks and stacks
of bright pink postcards and we were
organizing folks across the state to sign
those postcards supporting passage
of the ADA and then...
This was sort of a wonderful
but maybe a little bit misleading experience
we actually were successful! The bill got
passed! And I remember thinking
well this wasn't that hard, we had to
go at it twice but, this wasn't so hard;
lets take on some more legislation so
turns out it wasn't as easy as it looked to me
is 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 said, that's my earliest journey
to 1990.
Thank you Marcie. Ok, were's going to the present now
Just so you know, I have another interview at
2, so we're gonna have 3 more sections
the present, the future
and the call to action so just to
pace yourself within that.
So, the present: Has the ADA made a
difference. Tell us about your "aha moment"
that told you that the ADA is or isn't making
a difference and to what extent
based on your areas of passions and
expertise where you see or not see the impact of the ADA
Marcie: So the ADA has had a huge and sweeping
impact and it's important for me to begin, as
I talk about the present day, as we're embarking
on ADA30, it's really important to start with
how much things absolutely things have changed
so 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...often.
There have been many
great initiatives.
Over the years
But we always had to maintain a relentess
battle to not let anything slip
to no lose any sort of momentum
towards accessibility.
If we look away for a minute
our rights will be swept away from us
and 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 comparrison
to examples where it's working so
when transportation is not accessible
we're calling it out because we know the good
and promising practices
that have been in place
for transportation accessiblity
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 and in stark contrast the areas
where we are egregiously getting it wrong.
And I have to say that it's just very recently, I
have lead my organization's involvement in a
petition to the US department of Health and Human Services
demanding that people with disabilities be immediately relocated
out of nursing homes and other congregate settings
due to the horrific circumstances in those
congregate settings due to Covid-19
and the failure to provide
appropriate protections for people with
disabilities in institutional settings. The ADA
back in 1990, very clearly gave people with
disabilities significant rights and even when
challenged in 1999, the Olmstead Case
which was a Georgia case and two
women, Lois and Elaine, Lois Curtis,
an incredible woman
I've 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 integrated setting appropriate
to their needs and the decision, the case
went all the way to the supreme ccourt
and I was among those who
slept out on the steps of the Supreme Court
on the night before their
case was heard and I was
among the folks who celebrated
out in front of the Supreme Court on the day
that that decision came down in favor of
Lois and Elaine's right and the rights of tens
of thousands...millions of people with
disabilities to live in the most integrated setting
appropriate for their needs.
Given that we are 21 years after that
decision, yesterday the American Civil
Liberties Union submitted a petietion
and the World Insitute on Disability joined
a number of other disability organiations in
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 Olmstead decision and the
failures of our government to provide
the kinds of supports and services that
enable people with disabilites
to live safely and with the
support they need in place
in the community and very infuriatingly
our continued persistent calls for
people with disabilities to be adequately
served in these
in 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've had conversations
with a number of senior government officials
who are like, "Why are you saying
people with disabilities... these were
old people with underlying conditions living
in nursing homes and long-term care facilities."
Well, you don't go to a nursing home because
you're 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 the vast majority, some would say,
all of those deaths in congregate facilities are
people with disabilities. Most of them
Black and Brown and people living
in poverty and the failures of the the
Americans with Disabilities Act and the
Olmstead decision and our government's will
to monitor and enforce this law
and the rehabilitation act have a
devastating impact on where we are today
and death of many of our siblings...
without end in sight.
Than you, Marcie. Ok, so next on to
the future with the work you've been doing
you've seen a lot 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's hard, one thing
to have access and equality present in
the lives of people with disabilities what would that be?
Marcie: The one thing that must
happen: People with disabiites have civil
rights protections by law and the one thing
that must happen is that thier 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
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 what the Rehab Act and
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 and 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?
Marcie: So what we can do right now is
one of my favorite sayings: "Never give up,
Never give in." Another of my favorites:
"Nothing about us without us!" We as
disability community leaders need to stick
together. We need to center our work around
people who are multiply marginalized, exluded
We need to be sure that we're not wasting
our time with infighting and the kind of
divisive, childish behavior that some folks are
still stuck on engaging in. We absolutely must
reach a hand forward and 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 of them 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 for
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
disabiity-led organizations and
our allys to make communities
stronger, more resilient for the whole
community. 'Cause when we get it right
for people with disabilities, I think
the whole community, not only benefits but
is stronger for our leadership
our contributions, our expertise
in what it takes to make daily life work for everybody.
Excelent. Thank you!