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 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,
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 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 administrashion
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 be 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 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 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 high school, I had a requirement to do
I can't even remember what it's called now!
Community service! Sorry.
I had an opportunity to do, or I 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,
and it turned out that 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.
Needles to say, I learned way more from them than they learned from me,
but 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 still very much a part 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, it 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, 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 just had never been given the opportunity,
and others because of their physical disability
and a lack of any sort of adapted utensils or other equipment.
So as I was feeding people, sort of the routine was the same every day.
The plate would come out, and there would be
3 mounds of food on the plate.
One mound was always brown, one mound was always green,
and one mound was always white.
You know the meat, the vegetable, and the starch.
And, you know, I know that people like to eat their meal different ways.
There would also be a dessert every day,
jello, or ice cream, or something again always in a mound.
And so I would spend time with each of the
individuals who were having their meal
and would sort of be working together,
trying to figure out did they prefer to have
to eat their dessert first?
Some people liked to do that.
Did they prefer
a little bit of the brown and a little bit
of the white all on the same fork?
Did they not want their food touching?
You know and I would sort of work back and forth
with them to try and figure out what
their preference was and I got in trouble
because 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 some preferences.
So 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 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 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. And then I started
to become more aware of the work being
done. And this was back in the 70s
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 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 and voices and preferences of
other people and because I lived in
Connecticut and the original author of
the Americans with Disability Act,
the first time the bill was introduced was
Senator Weicker of Connecticut, and
Senator Weicker, father of a great young man
who had Down Syndrome.
Senator Weicker 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 Congress major hearings--
field hearings on the Americans with
Disability Act. So you know 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 re-introduced and votes
were organizing, I remember that we had
stacks and stacks and stacks of bright
pink postcards and we were organizing
folks across the state to develop,
to sign those postcards supporting the
passage of the ADA and then you know 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, "Oh, well this wasn't that hard
I mean, you know, we had to go at it twice
but well this wasn't so hard.
Let's take on some more legislation!"
So it turns out that it wasn't as easy
as it looked to me. It wasn't just about
hot pink postcards and meetings and
marches. That all helped but even that
sometimes these days, it doesn't seem to
be enough to change policy.
So that's my earliest journey to 1990.
Thank you Marcie. Okay we're going to the
present now. So just so you know, I do
have another interview at 2:00, so we're
going to have 3 more sections: the present
the future, and the call to action.
So just to pace yourself within those. --thank you
OK 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 areas of
expertise, where do you see or not see the
impact of the ADA?
So the ADA has had a huge
and sweeping impact
and it's important for me
to begin as I begin to talk
about the present day as we're embarking
on ADA 30 it's really important to start
with how much things absolutely have
changed, you know so certainly some of the
architectural barrier removal efforts,
some of the significant improvements
in equally effective communication,
some of the requirements around programs,
you know, all of those have significantly changed
most--- can't even say most of the time--often
there have been many really great initatives over
the years but we've always had to maintain
a relentless battle to not
let anything slip, to not 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
and so I do want to take a little 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
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 just very recently,
I have led my organization's involvement
in a petition to the US Dept 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
who.. Lois and Elaine, Lois Curtiss
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 Court
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 thousands, tens of thousands,
millions of people with disabilities
to live in the most integrated 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 other
disability organizations in bringing that petition
demanding that people with disabilities
be immediately be 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 kind of supports
and services that enable
people with disabilities
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 have had
conversations with a number of senior
government officials who, like, why are
you saying people with disabilities?
and you know, these were old people with
underlying conditions living in nursing homes
and in 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 Americans
with Disabilities Act, 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 the death of many of our siblings.
Without any end in sight.
Thank you Marcie, Ok. So next on to the future.
With the work you've been doing,
you've seen a lot of terms in 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?
The one thing that must happen:
people with disabilities have civil rights protections by law,
and 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
design 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 rue for people with civil rights protections
to be repeatedly denied
and unable to fully participate
in home and community life.
Monitoring and enforcement must be the floor
I have a 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, you know,
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, excluded.
We need to be sure that we are not wasting
our time with infighting, and with
a 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
hardworking 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
disability lead organizations and
our allies to make communities
stronger, more resilient for the whole
community because 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.
Excellent, thank you.