0:00:00.863,0:00:04.146
You'll see in the corner the record button

0:00:04.146,0:00:06.143
So you should see that it's recording now,

0:00:06.143,0:00:07.472
and I'm going to mute myself now,

0:00:07.472,0:00:08.844
and you'll go ahead and do your intro.

0:00:08.844,0:00:10.446
Thank you Marcie.

0:00:14.230,0:00:16.286
Hi there, I'm Marcie Roth

0:00:16.290,0:00:22.143
and I have been working in disability rights

0:00:22.143,0:00:26.224
for my whole adult life,

0:00:26.224,0:00:31.565
and actually, since I was a freshman in high school.

0:00:31.565,0:00:42.536
I am currently the executive director and CEO of the World Institute on Disability,

0:00:42.536,0:00:53.208
and I have been working over the years in services

0:00:53.208,0:01:00.960
for people living in residential programs early in my career

0:01:00.960,0:01:09.100
with people in, children in school settings,

0:01:09.100,0:01:15.002
people in vocational rehabilitation,

0:01:15.002,0:01:23.411
and then people in community living environments,

0:01:23.411,0:01:30.917
then along the way, I became very involved in disability rights

0:01:30.917,0:01:41.317
and very involved in the early days of advocacy

0:01:41.317,0:01:44.957
befor the ADA was introduced.

0:01:44.957,0:01:54.850
And then I worked for disability advocacy organizations almost ever since.

0:01:54.860,0:01:58.412
In addition to my own disability,

0:01:58.412,0:02:02.043
I'm also the parent of two

0:02:02.043,0:02:04.868
now adults with disabilities.

0:02:04.868,0:02:08.559
My Husband also has a disability,

0:02:08.559,0:02:17.443
and much od my family also happen to be people with disabilities

0:02:17.443,0:02:23.748
so disability rights is just part of

0:02:23.748,0:02:27.376
everything I am and most everything I do.

0:02:27.376,0:02:38.803
I did spend from 2001 and onward

0:02:38.803,0:02:44.427
focusing very much on what happens for people with disabilityes

0:02:44.434,0:02:47.084
before, during, and after disasters.

0:02:47.084,0:02:54.235
And that's been a real particular laser focus of mine ever since,

0:02:54.237,0:02:57.499
and in fact, I've had the opportunity

0:02:57.499,0:03:01.932
as an appointee in the Obama administrashion

0:03:01.932,0:03:08.229
to spend just about 8 yeards at FEMA,

0:03:08.229,0:03:14.501
establishing FEMA's Office of Disability Integration Coordination,

0:03:14.501,0:03:23.258
and building a cadre of disability experts

0:03:23.258,0:03:27.478
of the same pond, supporting governors

0:03:27.478,0:03:34.836
and emergency managers and most particularly

0:03:34.836,0:03:38.398
engaging people with disabilities, and disability organizations

0:03:38.398,0:03:42.170
in emergency preparedness

0:03:42.170,0:03:46.638
and throughout disaster response recovery and mitigation.

0:03:46.638,0:03:54.205
So one last piece since I've been with

0:03:54.205,0:03:59.132
the World Institute on Disability since last September,

0:03:59.132,0:04:05.602
my ongoing focus on global

0:04:05.602,0:04:09.431
disability rights has really been

0:04:09.431,0:04:12.550
something that I've had much more

0:04:12.550,0:04:16.305
opportunity to be actively involved in

0:04:16.305,0:04:26.005
and I have spent the time since joining

0:04:26.005,0:04:31.601
WID building a strategic planning process

0:04:31.601,0:04:36.884
and supporting the organization to

0:04:36.884,0:04:45.320
establish new priorities, taking a look at

0:04:45.320,0:04:48.797
the organization's mission, and very

0:04:48.797,0:04:53.082
recently establishing four particular areas

0:04:53.082,0:04:56.552
of focus for the organization as we move Forward.

0:04:59.472,0:05:01.972
Thank you Marcie. Excellent, okay

0:05:01.972,0:05:05.140
I apologize that my neighbor is chipping

0:05:05.140,0:05:08.165
a lot of brush today, so it's making extra sound

0:05:08.165,0:05:09.297
whenever I unmute,

0:05:09.297,0:05:12.656
but don't worry, it won't interfere with your recording.

0:05:12.656,0:05:14.990
Okay, so the first question is

0:05:14.990,0:05:17.225
about the past. So tell of your first

0:05:17.225,0:05:18.942
memory realizing that there were

0:05:18.942,0:05:21.762
accessibility issues, discrimination, or

0:05:21.762,0:05:24.198
lack of inclusion. What is your personal

0:05:24.198,0:05:26.409
story or connection with the American with

0:05:26.409,0:05:28.516
Disabilities Act? What do you remember

0:05:28.516,0:05:30.502
about the day that it was signed, if

0:05:30.502,0:05:32.946
applicable? And what was the impact on

0:05:32.946,0:05:36.062
you and on others? Remember to tap

0:05:36.062,0:05:38.888
something so that the camera shifts to you

0:05:38.888,0:05:39.917
before you start.

0:05:44.654,0:05:53.454
I first became aware of disability at a

0:05:53.454,0:05:58.355
very young age. I had a best friend in

0:05:58.355,0:06:04.758
first grade. His name was Gregory, and he and i

0:06:04.758,0:06:09.784
were just wonderful friends.

0:06:09.784,0:06:12.794
We spent a lot of time together, and then all

0:06:12.794,0:06:15.816
of a sudden, one day Gregory was gone

0:06:15.816,0:06:22.802
and I didn't know what happened to him or

0:06:22.802,0:06:25.507
where he went and it wasn't until many

0:06:25.507,0:06:30.291
years later that I found out that Gregory

0:06:30.291,0:06:34.911
had Down Syndrome, and he had been removed

0:06:34.911,0:06:38.502
from my kindergarten class and first

0:06:38.502,0:06:41.489
grade I think it was at that point. And

0:06:41.489,0:06:44.970
apparently he had been sent to some other

0:06:44.970,0:06:52.462
school, somewhere. And the loss of his

0:06:52.462,0:06:58.128
friendship was pretty surprising and

0:06:58.128,0:07:03.935
I didn't understand you know where he went

0:07:03.935,0:07:06.818
Looking back on it, it was kind of

0:07:06.818,0:07:09.239
peculiar that we didn't just get to still

0:07:09.239,0:07:11.819
be friends 'cause he didn't move away,

0:07:11.819,0:07:15.934
he just stopped going to my school.

0:07:15.934,0:07:28.004
But I remember just being confused and then

0:07:28.004,0:07:33.866
over the next number of years, I lived in

0:07:33.866,0:07:38.305
a town that was also the home of

0:07:38.305,0:07:43.314
Save the Children, and I was always very

0:07:43.314,0:07:48.486
interested in the work that Save the Children

0:07:48.486,0:07:53.791
was doing and I am embarrassed to admit

0:07:53.791,0:08:00.050
my earliest involvement in humanitarian

0:08:00.050,0:08:05.649
work was from a very charity-model

0:08:05.649,0:08:10.976
approach, and I spent a lot of my

0:08:10.976,0:08:16.018
childhood raising money for Save the Children

0:08:16.018,0:08:18.977
and getting involved in other

0:08:18.977,0:08:28.291
activities that were very much following

0:08:28.291,0:08:33.541
the charity-pity model and certainly not

0:08:33.541,0:08:45.420
a model making space for and supporting and lifting

0:08:45.420,0:08:49.595
up other people with disabilities.

0:08:49.595,0:08:57.039
the onset of my disability wasn't until many

0:08:57.039,0:09:01.520
years later, but when I was in high school

0:09:01.520,0:09:13.493
I had the, I had a requirement to do...

0:09:13.493,0:09:15.771
I can't even remember what it's called now

0:09:15.771,0:09:18.070
community service! Sorry. I had an

0:09:18.070,0:09:22.033
opportunity to do-- or I had an obligation

0:09:22.033,0:09:24.973
to do community service and I started off

9:59:59.000,9:59:59.000
This was the year of the first Earth Day

9:59:59.000,9:59:59.000
and I started crushing glass at the local

9:59:59.000,9:59:59.000
recycling center and it turned out that

9:59:59.000,9:59:59.000
that was really boring but lots of my

9:59:59.000,9:59:59.000
classmates were volunteering at a state

9:59:59.000,9:59:59.000
institution for people with disabilities

9:59:59.000,9:59:59.000
and I joined them once a week and looking

9:59:59.000,9:59:59.000
back on it again, it was pretty shocking

9:59:59.000,9:59:59.000
that at 13 years old, I was assigned as

9:59:59.000,9:59:59.000
the teacher of a classroom of 30 adults

9:59:59.000,9:59:59.000
who had never had the opportunity to

9:59:59.000,9:59:59.000
really attend school and they now had a

9:59:59.000,9:59:59.000
13-year old teacher once a week. Needless

9:59:59.000,9:59:59.000
to say, I learned way more from them than

9:59:59.000,9:59:59.000
they learned from me, but we had a lot of

9:59:59.000,9:59:59.000
fun and many of them became friends very

9:59:59.000,9:59:59.000
much along the rest of my path and

9:59:59.000,9:59:59.000
unfortunately, some of them are no longer

9:59:59.000,9:59:59.000
alive but there are a couple of people who

9:59:59.000,9:59:59.000
are still very much a part of my life and

9:59:59.000,9:59:59.000
fortunately, they were successful in

9:59:59.000,9:59:59.000
liberating themselves from that state

9:59:59.000,9:59:59.000
institution. And so they and many others

9:59:59.000,9:59:59.000
taught me a lot. But the real pivotal

9:59:59.000,9:59:59.000
experience for me, I was working back at

9:59:59.000,9:59:59.000
that state institution, it was my first

9:59:59.000,9:59:59.000
paid job in disability services and I had

9:59:59.000,9:59:59.000
been hired to work in what was called a

9:59:59.000,9:59:59.000
"cottage" for 40 women with intellectual

9:59:59.000,9:59:59.000
disabilites and this "cottage" was on

9:59:59.000,9:59:59.000
beautiful grounds but the women lived in a

9:59:59.000,9:59:59.000
building 20 on one side, 20 on the other

9:59:59.000,9:59:59.000
side and my responsibilities included

9:59:59.000,9:59:59.000
assisting them in bathing and getting

9:59:59.000,9:59:59.000
dressed and in eating. Many of them were

9:59:59.000,9:59:59.000
unable to feed themselves. Some because

9:59:59.000,9:59:59.000
they had never been given the opportunity,

9:59:59.000,9:59:59.000
others because of their physical

9:59:59.000,9:59:59.000
disability and a lack of any sort of

9:59:59.000,9:59:59.000
adapted utensils or other equipment.

9:59:59.000,9:59:59.000
So as I was feeding people, the sort of

9:59:59.000,9:59:59.000
routine was the same every day. A plate

9:59:59.000,9:59:59.000
would come out, and there would be 3

9:59:59.000,9:59:59.000
mounds of food on the plate. One mound was

9:59:59.000,9:59:59.000
always brown, one mound was always

9:59:59.000,9:59:59.000
green, and one mount was always white.

9:59:59.000,9:59:59.000
You know the meat, the vegetable, and the

9:59:59.000,9:59:59.000
starch. And I know that people like to

9:59:59.000,9:59:59.000
eat their meals in different ways. There

9:59:59.000,9:59:59.000
would also be a dessert every day, jello or

9:59:59.000,9:59:59.000
ice cream, again always in a mound.

9:59:59.000,9:59:59.000
And so I would spend time with each of the

9:59:59.000,9:59:59.000
individuals who were having their meal

9:59:59.000,9:59:59.000
and would sort of be working together,

9:59:59.000,9:59:59.000
trying to figure out if they preferred to

9:59:59.000,9:59:59.000
have, to eat their dessert first? Some

9:59:59.000,9:59:59.000
people liked to do that. Did they prefer a

9:59:59.000,9:59:59.000
little bit of the brown and a little bit

9:59:59.000,9:59:59.000
of the white all on the same fork? Did

9:59:59.000,9:59:59.000
they not want their food touching? You

9:59:59.000,9:59:59.000
know and I would sort of work back and

9:59:59.000,9:59:59.000
forth with them to try and figure out what

9:59:59.000,9:59:59.000
their preference was and I got in trouble

9:59:59.000,9:59:59.000
because I was spending too much time

9:59:59.000,9:59:59.000
and ultimately, I was moved to a different

9:59:59.000,9:59:59.000
position because I was taking too much

9:59:59.000,9:59:59.000
time giving people an opportunity to make

9:59:59.000,9:59:59.000
some choices and express some preferences.

9:59:59.000,9:59:59.000
So that was extremely pivotal and in many

9:59:59.000,9:59:59.000
ways you know, those early early

9:59:59.000,9:59:59.000
experiences have really totally driven who

9:59:59.000,9:59:59.000
I am and what I believe all these years

9:59:59.000,9:59:59.000
later. In terms of the Americans with

9:59:59.000,9:59:59.000
Disability Act, I had a very close

9:59:59.000,9:59:59.000
personal experience with what was then

9:59:59.000,9:59:59.000
called "public law 94142" the Education of

9:59:59.000,9:59:59.000
All Handicapped Act, later on renamed

9:59:59.000,9:59:59.000
Individuals with Disabilities Act, IDEA

9:59:59.000,9:59:59.000
and I had a very personal family

9:59:59.000,9:59:59.000
experience with IDEA and became aware of

9:59:59.000,9:59:59.000
legislative initiatives and how the IDEA

9:59:59.000,9:59:59.000
had just been passed. And then I started

9:59:59.000,9:59:59.000
to become more aware of the work being

9:59:59.000,9:59:59.000
done. And this was back in the 70s and

9:59:59.000,9:59:59.000
work being done of other legislative

9:59:59.000,9:59:59.000
initiatives and the 504, the passage of

9:59:59.000,9:59:59.000
the Rehabilitation Act, followed by the

9:59:59.000,9:59:59.000
504 sit-in in San Francisco to get the

9:59:59.000,9:59:59.000
regulations put in place. That really

9:59:59.000,9:59:59.000
caught my attention and between the little

9:59:59.000,9:59:59.000
bits of information I was getting there

9:59:59.000,9:59:59.000
and the work I was doing and then

9:59:59.000,9:59:59.000
becoming a full-time advocate going to

9:59:59.000,9:59:59.000
work for an independent living center in

9:59:59.000,9:59:59.000
1982, I then became extremely involved

9:59:59.000,9:59:59.000
in systems change and how to develop

9:59:59.000,9:59:59.000
policy, how to organize, how to support

9:59:59.000,9:59:59.000
the rights and voices and preferences of

9:59:59.000,9:59:59.000
other people and because I lived in

9:59:59.000,9:59:59.000
Connecticut and the original author of

9:59:59.000,9:59:59.000
the Americans with Disability Act, the

9:59:59.000,9:59:59.000
first time that it was introduced was

9:59:59.000,9:59:59.000
Senator Weicker of Connecticut, and

9:59:59.000,9:59:59.000
Senator Weicker, father of a great young

9:59:59.000,9:59:59.000
man who had Down Syndrome, Senator

9:59:59.000,9:59:59.000
Weicker was very involved with the

9:59:59.000,9:59:59.000
disability advocacy community in

9:59:59.000,9:59:59.000
Connecticut, and I then had the incredible

9:59:59.000,9:59:59.000
opportunity to go to Boston and testify

9:59:59.000,9:59:59.000
at one of the Congress major hearings--

9:59:59.000,9:59:59.000
field hearings on the Americans with

9:59:59.000,9:59:59.000
Disability Act. So you know of course the

9:59:59.000,9:59:59.000
first time around, the bill didn't pass

9:59:59.000,9:59:59.000
but we were revved up and in the

9:59:59.000,9:59:59.000
passage of the ADA, in the period in which

9:59:59.000,9:59:59.000
once the bill was re-introduced and votes

9:59:59.000,9:59:59.000
were organizing, I remember that we had

9:59:59.000,9:59:59.000
stacks and stacks and stacks of bright

9:59:59.000,9:59:59.000
pink postcards and we were organizing

9:59:59.000,9:59:59.000
folks across the states to develop, to

9:59:59.000,9:59:59.000
sign those postcards supporting the

9:59:59.000,9:59:59.000
passage of the ADA and then you know this

9:59:59.000,9:59:59.000
was sort of a wonderful but maybe

9:59:59.000,9:59:59.000
misleading experience, we actually were

9:59:59.000,9:59:59.000
successful. The bill got passed! And I

9:59:59.000,9:59:59.000
remember thinking "Oh, well this wasn't

9:59:59.000,9:59:59.000
that hard. I mean, you know, we had to go

9:59:59.000,9:59:59.000
at it twice, but well this wasn't so hard.

9:59:59.000,9:59:59.000
Let's take on some more legislation!" And

9:59:59.000,9:59:59.000
it turns out that it wasn't as easy

9:59:59.000,9:59:59.000
as it looked to me. It wasn't just about

9:59:59.000,9:59:59.000
hot pink postcards and meetings and

9:59:59.000,9:59:59.000
marches--that all helped but even that

9:59:59.000,9:59:59.000
sometimes these days, it doesn't seem to

9:59:59.000,9:59:59.000
be enough to change policy. So that is my

9:59:59.000,9:59:59.000
earliest journey to 1990.

9:59:59.000,9:59:59.000
Thank you Marcie. Okay we're going to the

9:59:59.000,9:59:59.000
present now. So just so you know, I do

9:59:59.000,9:59:59.000
have another interview at 2:00, so we're

9:59:59.000,9:59:59.000
going to have 3 more sections: the present

9:59:59.000,9:59:59.000
the future, and the call to action. So

9:59:59.000,9:59:59.000
just to pace yourself within the--thank

9:59:59.000,9:59:59.000
you. So within the present, has the ADA

9:59:59.000,9:59:59.000
made a difference? Tell us about your

9:59:59.000,9:59:59.000
"aha" moment that told you that the ADA is

9:59:59.000,9:59:59.000
or is not making a difference and to what

9:59:59.000,9:59:59.000
extent based on your passions and areas of

9:59:59.000,9:59:59.000
expertise, where do you see or not see the

9:59:59.000,9:59:59.000
impact of the ADA?

9:59:59.000,9:59:59.000
So the ADA has had a huge

9:59:59.000,9:59:59.000
and sweeping impact

9:59:59.000,9:59:59.000
and it's important for me

9:59:59.000,9:59:59.000
as I begin to talk

9:59:59.000,9:59:59.000
about the present day as we're embarking

9:59:59.000,9:59:59.000
on ADA 30 it's really important to start

9:59:59.000,9:59:59.000
with how much things absolutely have

9:59:59.000,9:59:59.000
changed, certainly some of the

9:59:59.000,9:59:59.000
architectural barrier removal efforts,

9:59:59.000,9:59:59.000
some of the significant improvements

9:59:59.000,9:59:59.000
in equally effective communication,

9:59:59.000,9:59:59.000
some of the requirements around programs,

9:59:59.000,9:59:59.000
all of those have significantly changed

9:59:59.000,9:59:59.000
most often can't even say most--often

9:59:59.000,9:59:59.000
there's been really great initatives over

9:59:59.000,9:59:59.000
the years but we've always had to maintain

9:59:59.000,9:59:59.000
a relentless battle to not

9:59:59.000,9:59:59.000
let anything slip, to not let

9:59:59.000,9:59:59.000
anything lose any sort of momentum

9:59:59.000,9:59:59.000
towards accessibility,

9:59:59.000,9:59:59.000
if we look away for a minute

9:59:59.000,9:59:59.000
our rights will be swept away from us,

9:59:59.000,9:59:59.000
and I can certainly talk about

9:59:59.000,9:59:59.000
the very present day

9:59:59.000,9:59:59.000
and what I have to say about where

9:59:59.000,9:59:59.000
we are today is not great

9:59:59.000,9:59:59.000
and I do want to take a little more time

9:59:59.000,9:59:59.000
to call out the significant progress;

9:59:59.000,9:59:59.000
in so many aspects of daily life

9:59:59.000,9:59:59.000
in which we can

9:59:59.000,9:59:59.000
call out failures of ADA compliance,

9:59:59.000,9:59:59.000
enforcement of the law but oftentimes

9:59:59.000,9:59:59.000
in comparison to the examples of where

9:59:59.000,9:59:59.000
it's working, so when transportation

9:59:59.000,9:59:59.000
is not accessible, we're calling it out

9:59:59.000,9:59:59.000
because we know the good and promising

9:59:59.000,9:59:59.000
practices that have been in place

9:59:59.000,9:59:59.000
for transportation accessiblity

9:59:59.000,9:59:59.000
make the failures so much more egregious

9:59:59.000,9:59:59.000
in housing, in employment, in the kinds of

9:59:59.000,9:59:59.000
assistive devices that are available, the

9:59:59.000,9:59:59.000
universal design of places and things

9:59:59.000,9:59:59.000
all of that points to examples of where we

9:59:59.000,9:59:59.000
are getting it right and in stark contrast

9:59:59.000,9:59:59.000
where the areas where we are

9:59:59.000,9:59:59.000
egregiously getting it wrong

9:59:59.000,9:59:59.000
and just very recently I have led

9:59:59.000,9:59:59.000
my organization's involvement in

9:59:59.000,9:59:59.000
a petition to US Dept of Health and Human

9:59:59.000,9:59:59.000
Services demanding that people with

9:59:59.000,9:59:59.000
disabilities be immediately relocated

9:59:59.000,9:59:59.000
out of nursing homes and other congregate

9:59:59.000,9:59:59.000
settings due to the

9:59:59.000,9:59:59.000
horrific circumstances in those congregate

9:59:59.000,9:59:59.000
settings due to covid-19

9:59:59.000,9:59:59.000
and the failure to provide appropriate protections

9:59:59.000,9:59:59.000
for people with disabilities

9:59:59.000,9:59:59.000
in institutional settings

9:59:59.000,9:59:59.000
the ADA back in 1990

9:59:59.000,9:59:59.000
very clearly gave people with

9:59:59.000,9:59:59.000
disabilities significant rights, and

9:59:59.000,9:59:59.000
even when challenged in 1999 the Olmstead

9:59:59.000,9:59:59.000
case, which was a Georgia case, two women

9:59:59.000,9:59:59.000
Lois and Elaine, Lois Curtiss

9:59:59.000,9:59:59.000
an incredible woman I had the

9:59:59.000,9:59:59.000
pleasure of being with on a number

9:59:59.000,9:59:59.000
of occasions, the two of them

9:59:59.000,9:59:59.000
demanded that they had a right to live in

9:59:59.000,9:59:59.000
the most integrated setting

9:59:59.000,9:59:59.000
most appropriate to their needs,

9:59:59.000,9:59:59.000
and the decision, the case went

9:59:59.000,9:59:59.000
all the way to the Supreme Court

9:59:59.000,9:59:59.000
and I was among those who

9:59:59.000,9:59:59.000
slept outside the Supreme Court the night

9:59:59.000,9:59:59.000
before their case was heard

9:59:59.000,9:59:59.000
and I was among

9:59:59.000,9:59:59.000
the folks who celebrated out in front of

9:59:59.000,9:59:59.000
the Supreme Court the day that case came

9:59:59.000,9:59:59.000
down in favor of Lois and Elaine's right,

9:59:59.000,9:59:59.000
and the rights of 10s of 1000's,

9:59:59.000,9:59:59.000
millions of people with

9:59:59.000,9:59:59.000
disabilities to live in the most

9:59:59.000,9:59:59.000
integrated setting

9:59:59.000,9:59:59.000
appropriate to their needs. Given

9:59:59.000,9:59:59.000
we are 21 years after that decision,

9:59:59.000,9:59:59.000
yesterday American Civil Liberties Union

9:59:59.000,9:59:59.000
submitted

9:59:59.000,9:59:59.000
a petition and the World Institute of

9:59:59.000,9:59:59.000
Disability joined a number of

9:59:59.000,9:59:59.000
other disability

9:59:59.000,9:59:59.000
organizations in bringing that petition

9:59:59.000,9:59:59.000
demanding that people with disabilities

9:59:59.000,9:59:59.000
immediately be relocated

9:59:59.000,9:59:59.000
out of these congregate settings

9:59:59.000,9:59:59.000
10s of 1000's of people have died in

9:59:59.000,9:59:59.000
the last 100 days, the genocide

9:59:59.000,9:59:59.000
of people with disabilities because of

9:59:59.000,9:59:59.000
the failures of implementation of that

9:59:59.000,9:59:59.000
Olmstead decision and the failures of our

9:59:59.000,9:59:59.000
government to provide the kind of supports

9:59:59.000,9:59:59.000
and services that enable

9:59:59.000,9:59:59.000
people with disabilities

9:59:59.000,9:59:59.000
to live safely and with the support they

9:59:59.000,9:59:59.000
need in place in the community

9:59:59.000,9:59:59.000
and, very infuriatingly our consistently

9:59:59.000,9:59:59.000
persistent calls for

9:59:59.000,9:59:59.000
people with disabilities to be

9:59:59.000,9:59:59.000
adequately served in these, in these

9:59:59.000,9:59:59.000
disasters have been ignored, and again

9:59:59.000,9:59:59.000
the bottom line has been that the last 100

9:59:59.000,9:59:59.000
days 10s of 1000's of people with

9:59:59.000,9:59:59.000
disabilities have died. And when I was

9:59:59.000,9:59:59.000
called on, saying that those were

9:59:59.000,9:59:59.000
people with disabilities I have had

9:59:59.000,9:59:59.000
conversations with a number of senior

9:59:59.000,9:59:59.000
government officials who, like, why are

9:59:59.000,9:59:59.000
you saying people with disabilities? And

9:59:59.000,9:59:59.000
you know, these were old people with

9:59:59.000,9:59:59.000
underlying conditions living in nursing

9:59:59.000,9:59:59.000
homes and in long term care facilities.

9:59:59.000,9:59:59.000
Well you don't go to a nursing home

9:59:59.000,9:59:59.000
because you're old, you go to a nursing

9:59:59.000,9:59:59.000
home because you have a disability and the

9:59:59.000,9:59:59.000
supports and services you need to stay in

9:59:59.000,9:59:59.000
the community have not been given to you.

9:59:59.000,9:59:59.000
And the vast majority, some would say, all of

9:59:59.000,9:59:59.000
those deaths in congregate settings are

9:59:59.000,9:59:59.000
people with disabilities, most of them

9:59:59.000,9:59:59.000
black and brown and people living in

9:59:59.000,9:59:59.000
poverty. And the failures of Americans

9:59:59.000,9:59:59.000
with Disabilities Act, the Olmstead

9:59:59.000,9:59:59.000
decision, and our government's

9:59:59.000,9:59:59.000
will to monitor and enforce this law

9:59:59.000,9:59:59.000
and the rehabilitation act have a

9:59:59.000,9:59:59.000
devastating impact on where we are today.

9:59:59.000,9:59:59.000
And the death of many of our siblings.

9:59:59.000,9:59:59.000
Without any end in sight.

9:59:59.000,9:59:59.000
Thank you Marcie, Ok. So next on to the

9:59:59.000,9:59:59.000
future, with the work that you've been

9:59:59.000,9:59:59.000
doing you've seen a lot of progress

9:59:59.000,9:59:59.000
and barriers. If you could pick one thing

9:59:59.000,9:59:59.000
to change or that needs to occur to have

9:59:59.000,9:59:59.000
access and equality--I know that's hard

9:59:59.000,9:59:59.000
--one thing to have equality and access

9:59:59.000,9:59:59.000
present in the lives of people with

9:59:59.000,9:59:59.000
disabilities what would that be?

9:59:59.000,9:59:59.000
The one thing that must happen:

9:59:59.000,9:59:59.000
people with disabilities have civil rights

9:59:59.000,9:59:59.000
protections by law and the one thing

9:59:59.000,9:59:59.000
that must happen

9:59:59.000,9:59:59.000
is that their rights are monitored and

9:59:59.000,9:59:59.000
enforced without exception. Following

9:59:59.000,9:59:59.000
the law is not enough, we need universal

9:59:59.000,9:59:59.000
design to be the standard we need

9:59:59.000,9:59:59.000
accessibility and accommodation

9:59:59.000,9:59:59.000
to be readily available but we must have

9:59:59.000,9:59:59.000
monitoring and enforcement. Every

9:59:59.000,9:59:59.000
federal dollar is supposed to be spent in

9:59:59.000,9:59:59.000
compliance with the rehabilitation act

9:59:59.000,9:59:59.000
and between the Rehab Act and the ADA

9:59:59.000,9:59:59.000
they require, their should be, no

9:59:59.000,9:59:59.000
rue for those people with civil rights

9:59:59.000,9:59:59.000
protections to be repeatedly denied

9:59:59.000,9:59:59.000
and unable to fully participate

9:59:59.000,9:59:59.000
in home and community life. Monitoring

9:59:59.000,9:59:59.000
and enforcement must be the floor

9:59:59.000,9:59:59.000
I have a ceiling but enforcing

9:59:59.000,9:59:59.000
these civil rights laws is absolutely

9:59:59.000,9:59:59.000
the floor. Thank you. What can we do?

9:59:59.000,9:59:59.000
What can we as community members

9:59:59.000,9:59:59.000
take right now? So what we can do right

9:59:59.000,9:59:59.000
now is, you know, one of my favorite

9:59:59.000,9:59:59.000
sayings, "never give up, never give in"

9:59:59.000,9:59:59.000
another of my favorites, "nothing about us

9:59:59.000,9:59:59.000
without us" we as disability community

9:59:59.000,9:59:59.000
leaders need to stick together, we need to

9:59:59.000,9:59:59.000
center our work around people who are

9:59:59.000,9:59:59.000
multiply marginalized, excluded

9:59:59.000,9:59:59.000
we need to be sure that we are not wasting

9:59:59.000,9:59:59.000
our time with infighting and with

9:59:59.000,9:59:59.000
a kind of divisive childish behavior that

9:59:59.000,9:59:59.000
some folks are still stuck in engaging in

9:59:59.000,9:59:59.000
we absolutely must reach a hand forward

9:59:59.000,9:59:59.000
reach a hand back stick together

9:59:59.000,9:59:59.000
and continue relentlessly to work

9:59:59.000,9:59:59.000
towards the realization of the goal

9:59:59.000,9:59:59.000
that the ADA was written around and so

9:59:59.000,9:59:59.000
many of our siblings have fought so very

9:59:59.000,9:59:59.000
hard for. We've lost a bunch of those

9:59:59.000,9:59:59.000
hardworking visionary leaders; many of them

9:59:59.000,9:59:59.000
have been lost in recent years, some of them

9:59:59.000,9:59:59.000
have been lost along the way, we have an

9:59:59.000,9:59:59.000
incredible legacy to care for, we have

9:59:59.000,9:59:59.000
huge opportunities to work towards

9:59:59.000,9:59:59.000
technology has the potential for leveling

9:59:59.000,9:59:59.000
the playing field if in fact people have

9:59:59.000,9:59:59.000
real access and the World Institute on

9:59:59.000,9:59:59.000
Disability and our commitment to

9:59:59.000,9:59:59.000
work in partnership with other

9:59:59.000,9:59:59.000
disability lead organizations and

9:59:59.000,9:59:59.000
our allies to make communities

9:59:59.000,9:59:59.000
stronger, more resilient for the whole

9:59:59.000,9:59:59.000
community because when we get it right

9:59:59.000,9:59:59.000
for people with disabilities I think

9:59:59.000,9:59:59.000
the whole community not only benefits

9:59:59.000,9:59:59.000
but is stronger for our leadership, our

9:59:59.000,9:59:59.000
contributions, our expertise in

9:59:59.000,9:59:59.000
what it takes to make daily life work for

9:59:59.000,9:59:59.000
everybody. Excellent, thank you.