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

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So you should see that it’s recording now,

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And I’m going to mute myself

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And you’ll go ahead and do your intro.

0:00:09.444,0:00:11.046
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

0:00:53.208,0:00:59.500
for people living in residential programs early

0:00:59.500,0:01:05.460
in my career with people in,

0:01:05.460,0:01:09.100
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
that 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
before 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 of my family also happen to be people with disabilities

0:02:17.443,0:02:23.748
so disability rights is just a 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 disabilities

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 administration

0:03:01.932,0:03:08.229
to spend just about 8 years 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,

0:03:59.132,0:04:09.362
my ongoing focus on global disability rights has really been

0:04:09.431,0:04:16.305
something that I’ve had much more opportunity to e 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

0:04:31.601,0:04:42.844
and supporting the organizations to establish new priorities,

0:04:42.844,0:04:47.130
taking a look at the organization’s mission

0:04:47.130,0:04:53.662
and very recently establishing four particular areas of focus

0:04:53.662,0:04:56.842
for the organization as we move forward.

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

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I apologize that my neighbor is chipping a lot of brush today,

0:05:06.528,0:05:09.185
so it’s making extra sound whenever I unmute

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but don’t worry, it won’t interfere with your recording.

0:05:12.656,0:05:15.956
Okay, so the first question is about the past.

0:05:15.956,0:05:18.926
So tell of your first memory realizing that there were

0:05:18.942,0:05:23.077
accessibility issues, discrimination, or lack of inclusion.

0:05:23.077,0:05:25.669
What is your personal story or connection

0:05:25.669,0:05:28.828
to the American’s with Disabilities Act? What do you remember

0:05:28.828,0:05:31.430
about the day that it was signed, if applicable?

0:05:31.430,0:05:34.982
And what was the impact on you and on others?

0:05:34.982,0:05:38.632
Remember to tap something so that the camera shifts to you

0:05:38.632,0:05:39.917
before you start.

0:05:44.654,0:05:55.442
I first became aware of disability at a very young age.

0:05:55.442,0:06:02.133
I had a best friend in first grade, his name was Gregory,

0:06:02.133,0:06:09.688
and he and I were just wonderful friends.

0:06:09.688,0:06:12.404
We spent a lot of time together,

0:06:12.404,0:06:16.556
and then all of the sudden one day, Gregory was gone,

0:06:16.556,0:06:24.162
and I didn’t know what happened to him or where he went

0:06:24.162,0:06:26.957
and it wasn’t until many years later

0:06:26.957,0:06:32.587
that I found out that Gregory had Down Syndrome,

0:06:32.587,0:06:36.990
and he had been removed from my Kindergarten class,

0:06:36.990,0:06:41.189
and first grade I think it was at that point,

0:06:41.189,0:06:46.850
and apparently he had been sent to some other school somewhere.

0:06:46.850,0:06:58.048
And the loss of his friendship was pretty surprising

0:06:58.048,0:07:03.935
and I didn’t understand, you know, where he went.

0:07:03.935,0:07:09.239
Looking back on it it’s kind of peculiar that we didn’t get to still be friends

0:07:09.239,0:07:14.809
‘cause he didn’t move away, he just stopped going to my school.

0:07:15.891,0:07:18.691
But, I...

0:07:20.723,0:07:31.654
I remember just being confused and then over the next number of years,

0:07:31.654,0:07:40.148
I lived in a town that was also the home of Save the Children,

0:07:40.148,0:07:49.678
and I was always very interested in the work that Save the Children was doing,

0:07:49.678,0:07:56.968
and I am embarrassed to admit that my earliest involvement

0:07:56.968,0:08:06.482
in humanitarian work was from a, you know, very charity-model approach,

0:08:06.482,0:08:16.018
and I spent a lot of my childhood raising money for Save the Children,

0:08:16.018,0:08:28.147
and getting involved in other activities that were very much following

0:08:28.161,0:08:39.100
the charity-pity model and certainly not a model of

0:08:39.100,0:08:50.415
making space for and supporting and lifting up other people with disabilities.

0:08:50.415,0:08:58.915
the onset of my disability wasn't until [br]many years later,

0:08:58.915,0:09:07.473
but when I was in highschool I had a requirement

0:09:10.733,0:09:16.371
to do community service I had and opportunity to do

0:09:16.371,0:09:21.910
or had an obligation to do community service

0:09:21.910,0:09:26.663
And I started off...this was the year of the

0:09:26.663,0:09:31.397
first Earth Day and I started crushing glass

0:09:31.397,0:09:36.508
at the local recycling center. I turned out

0:09:36.508,0:09:42.425
that was really boring but lots of my

0:09:42.425,0:09:49.043
classmates were volunteering at a state institution

0:09:49.043,0:09:54.691
for people with disabilities and I joined them

0:09:54.691,0:10:04.199
once a week and looking back on it again it was

0:10:04.199,0:10:09.143
pretty shocking that at 13 years old I was assigned

0:10:09.143,0:10:16.799
as the teacher of a classroom of 30 adults

0:10:16.799,0:10:22.850
who had never had the opportunity to attend

0:10:22.850,0:10:27.494
school and they now had a 13 year old teacher

0:10:27.494,0:10:33.750
once a week. Needless to say, I learned

0:10:33.750,0:10:37.200
way more from them than they learned

0:10:37.200,0:10:44.626
from me bug we had a lot of fun and many of them became

0:10:44.626,0:10:50.698
friends very much along the rest of my path

0:10:50.698,0:10:54.216
unfortunately, some of them are no longer alive

0:10:54.216,0:10:58.433
but there are a couple of people who are

0:10:58.433,0:11:05.716
very much a part of my life and fortunately

0:11:05.716,0:11:09.219
they were successful in liberating themselves

0:11:09.219,0:11:13.394
from that state institution, so they and

0:11:13.394,0:11:21.159
many others taught me a lot but the real

0:11:21.159,0:11:26.971
pivotal experience for me, I was working back

0:11:26.971,0:11:32.147
at that state institution. This was my first

0:11:32.147,0:11:37.095
paid job in disability services and I had been

0:11:37.095,0:11:42.796
hired to work in what was called a cottage

0:11:42.796,0:11:51.645
for 40 women with intellectual disabilities

0:11:51.645,0:11:59.059
and this cottage was on beautiful grounds but the women lived in a building with 20 on one side 20 on the other side

0:11:59.059,0:12:08.952
and my responsibilities included assisting them in bathing and getting dressed

0:12:08.952,0:12:16.833
and in eating. many of them were unable to

0:12:16.833,0:12:21.689
feed themselves. Some because they had

0:12:21.689,0:12:26.143
never been given the opportunity and others

0:12:26.143,0:12:29.612
because of their physical disability and

0:12:29.612,0:12:44.827
a lack of any sort of adaptive utensils or adaptive equipment

0:12:44.827,0:12:51.663
as I was feeding people it was the same every

0:12:51.663,0:12:56.017
day. A plate would come out and there were

0:12:56.017,0:12:58.837
3 mounds of food on the plate. One mound

0:12:58.837,0:13:01.777
was alway brown one mound was always green

0:13:01.777,0:13:08.103
and one mound was always white. The meat

0:13:08.103,0:13:20.439
the vegetable and the starch, and I know that

0:13:20.439,0:13:24.002
people like to eat their meal different

0:13:24.002,0:13:27.391
ways. There would also be a desert every

0:13:27.391,0:13:30.097
day, a jello or ice cream, again in a

0:13:30.097,0:13:41.551
mound.and I would spend time with each of

0:13:41.551,0:13:45.842
the individuals who were having their meal

0:13:45.842,0:13:51.839
and we'd be working together trying to

0:13:51.839,0:13:56.419
figure out, did they prefer to eat their desert first?

0:13:56.419,0:13:58.589
Did they prefer

0:13:58.589,0:14:01.048
a little bit of the brown and a little

0:14:01.048,0:14:03.879
bit of the white on the fork? Did they not

0:14:03.879,0:14:06.716
want their food touching? And so I would

0:14:06.716,0:14:09.833
work back and forth with them to try to

0:14:09.833,0:14:12.971
figure out what their preference was and

0:14:12.971,0:14:16.733
I got in trouble 'cause I was spending too

0:14:16.733,0:14:22.933
much time and ultimately I was moved

0:14:22.933,0:14:28.092
to a different position because I was

0:14:28.092,0:14:30.933
taking too much time giving people an

0:14:30.933,0:14:34.933
opportunity to make some choices and

0:14:34.933,0:14:38.842
express preferences.

0:14:38.842,0:14:43.774
So that was extremely pivitol, and in many ways,

0:14:43.774,0:14:52.523
those early experiences have really totally

0:14:52.523,0:14:56.133
driven who I am and what

0:14:56.133,0:15:00.678
I believe all these years later.

0:15:00.678,0:15:06.200
In terms of the Americans with Disabilities Act

0:15:06.200,0:15:12.203
I had a very close personal experience with

0:15:12.203,0:15:16.506
what was then called Public Law 94142:

0:15:16.506,0:15:23.399
The Education of All Handicapped Act,

0:15:23.399,0:15:27.715
later on renamed The Individuals with Disabiities Act

0:15:27.715,0:15:34.286
IDEA, and I had a very personal family experience

0:15:34.286,0:15:41.013
with IDEA and became aware of legislative initiatives

0:15:41.013,0:15:47.834
and how the IDEA had just been passed

0:15:47.834,0:15:55.251
and then I started to become more aware

0:15:55.251,0:16:02.697
of the work being done, back in the 70's.

0:16:02.697,0:16:06.764
Work being done on some other legislative

0:16:06.764,0:16:12.723
initiatives, the 504, the passage of the

0:16:12.723,0:16:18.753
Rehabilitation Act, followed by the 504

0:16:18.753,0:16:25.305
sit-in in San Francisco to get the

0:16:25.305,0:16:30.182
regulations put in place. That really

0:16:30.182,0:16:35.762
caught my attention. And between the

0:16:35.762,0:16:39.758
little bits of information I was getting

0:16:39.758,0:16:43.418
there and the work that I was doing

0:16:43.418,0:16:49.583
and then becomming a full-time

0:16:49.583,0:16:53.221
advocate. Going to work for an

0:16:53.221,0:16:57.058
independent living center in 1982.

0:16:57.058,0:17:03.339
I then became extremely involved in

0:17:03.339,0:17:10.003
systems change and how to develop

0:17:10.003,0:17:15.224
policy, how to organize and support the

0:17:15.224,0:17:20.457
rights, voices and preferences of other

0:17:20.457,0:17:28.260
people and because I lived in Connecticut and

0:17:28.260,0:17:34.309
the original author of the Americans with

0:17:34.309,0:17:36.849
Disabilities Act, the first time the bill

0:17:36.849,0:17:39.417
was introduced was Senator Will Weiker

0:17:39.417,0:17:44.021
of Connecticut and Senator Weiker,

0:17:44.021,0:17:48.820
father of a great young man who

0:17:48.820,0:17:55.534
had Down Syndrome, Senator Weiker

0:17:55.534,0:18:01.717
was very involved with the disability

0:18:01.717,0:18:06.344
advocacy community in Connecticut and

0:18:06.344,0:18:11.276
I then had the incredible opportunity to

0:18:11.276,0:18:16.116
go to Boston and testify at one of

0:18:16.116,0:18:23.540
the, Congressman Major Owens feild hearings

0:18:23.540,0:18:27.150
on the Americans with Disabiities Act so

0:18:27.150,0:18:30.260
of course that first time around

0:18:30.260,0:18:33.114
the bill didn't pass.

0:18:33.114,0:18:36.776
But boy oh boy, were we revved up

0:18:36.776,0:18:46.389
and in the passage of the ADA

0:18:46.389,0:18:46.639
...

0:18:46.639,0:18:50.406
In the period in which, once the bill

0:18:50.406,0:18:53.900
was reintroduced and folks were organizing

0:18:53.900,0:19:00.120
I remember that we had stacks and stacks

0:19:00.120,0:19:05.472
of bright pink postcards and we were

0:19:05.472,0:19:12.518
organizing folks across the state to sign

0:19:12.518,0:19:18.740
those postcards supporting passage

0:19:18.740,0:19:26.487
of the ADA and then...

0:19:26.487,0:19:30.027
This was sort of a wonderful

0:19:30.027,0:19:34.696
but maybe a little bit misleading experience

0:19:34.696,0:19:38.432
we actually were successful! The bill got

0:19:38.432,0:19:42.001
passed! And I remember thinking

0:19:42.001,0:19:45.395
well this wasn't that hard, we had to

0:19:45.395,0:19:48.607
go at it twice but, this wasn't so hard;

0:19:48.607,0:19:52.077
lets take on some more legislation so

0:19:52.077,0:19:58.265
turns out it wasn't as easy as it looked to me

0:19:58.265,0:20:01.441
is wasn't just about hot pink post cards

0:20:01.441,0:20:04.572
and meetings and marches.

0:20:04.572,0:20:09.216
That all helped but even that, sometimes

0:20:09.216,0:20:14.468
these days, doesn't seem to be enough

0:20:14.468,0:20:18.750
to change policy.

0:20:18.750,0:20:27.902
That said, that's my earliest journey

0:20:27.902,0:20:30.966
to 1990.

0:20:30.966,0:20:36.309
Thank you Marcie. Ok, were's going to the present now

0:20:36.309,0:20:39.219
Just so you know, I have another interview at

0:20:39.219,0:20:43.853
2, so we're gonna have 3 more sections

0:20:43.853,0:20:45.758
the present, the future

0:20:45.758,0:20:48.612
and the call to action so just to

0:20:48.612,0:20:51.438
pace yourself within that.

0:20:51.438,0:20:53.616
So, the present: Has the ADA made a

0:20:53.616,0:20:56.518
difference. Tell us about your "aha moment"

0:20:56.518,0:20:59.953
that told you that the ADA is or isn't making

0:20:59.953,0:21:02.723
a difference and to what extent

0:21:02.723,0:21:05.605
based on your areas of passions and

0:21:05.605,0:21:09.757
expertise where you see or not see the impact of the ADA

0:21:09.757,0:21:17.164
Marcie: So the ADA has had a huge and sweeping

0:21:17.164,0:21:26.425
impact and it's important for me to begin, as

0:21:26.425,0:21:30.925
I talk about the present day, as we're embarking

0:21:30.925,0:21:36.410
on ADA30, it's really important to start with

0:21:36.410,0:21:42.204
how much things absolutely things have changed

0:21:42.204,0:21:48.658
so certainly some of the architectural

0:21:48.658,0:21:52.208
barrier removal efforts.

0:21:52.208,0:21:54.941
some of the significant

0:21:54.941,0:21:58.345
improvements in effective

0:21:58.345,0:22:03.282
equally effective communication

0:22:03.282,0:22:07.952
some of the requirements around programs.

0:22:07.952,0:22:10.142
All of those

0:22:10.142,0:22:18.661
have significantly changed...often.

0:22:18.661,0:22:21.895
There have been many

0:22:21.895,0:22:23.829
great initiatives.

0:22:23.829,0:22:26.367
Over the years

0:22:26.367,0:22:33.174
But we always had to maintain a relentess

0:22:33.174,0:22:41.072
battle to not let anything slip

0:22:41.072,0:22:45.202
to no lose any sort of momentum

0:22:45.202,0:22:49.389
towards accessibility.

0:22:49.389,0:22:55.863
If we look away for a minute

0:22:55.863,0:22:59.790
our rights will be swept away from us

0:22:59.790,0:23:03.651
and I can certainly talk about the very

0:23:03.651,0:23:10.698
present day...and what I have to say about

0:23:10.698,0:23:16.601
where we are today...

0:23:16.601,0:23:19.852
is not great. So I do want to take

0:23:19.852,0:23:23.826
a little bit more time to call out the

0:23:23.826,0:23:35.351
significant progress in so many aspects of

0:23:35.351,0:23:40.073
daily life, in which,

0:23:40.073,0:23:50.730
we can call out failures of ADA compliance,

0:23:50.730,0:23:59.059
enforcement of the law, but it is

0:23:59.059,0:24:02.838
often times in comparrison

0:24:02.838,0:24:06.251
to examples where it's working so

0:24:06.251,0:24:12.229
when transportation is not accessible

0:24:12.229,0:24:19.852
we're calling it out because we know the good

0:24:19.852,0:24:22.869
and promising practices

0:24:22.869,0:24:25.465
that have been in place

0:24:25.465,0:24:29.719
for transportation accessiblity

0:24:29.719,0:24:38.658
make the failures so much more egregious... in housing

0:24:38.658,0:24:46.427
in employment, in the kinds of assistive devices

0:24:46.427,0:24:53.008
that are available. The universal design

0:24:53.008,0:25:00.503
of places and things...all of that

0:25:00.503,0:25:10.385
points to the examples of where we are

0:25:10.385,0:25:15.623
getting it right and in stark contrast the areas

0:25:15.623,0:25:20.321
where we are egregiously getting it wrong.

0:25:20.321,0:25:32.251
And I have to say that it's just very recently, I

0:25:32.251,0:25:40.478
have lead my organization's involvement in a

0:25:40.478,0:25:47.207
petition to the US department of Health and Human Services

0:25:47.207,0:25:55.790
demanding that people with disabilities be immediately relocated

0:25:55.790,0:26:04.012
out of nursing homes and other congregate settings

0:26:04.012,0:26:08.621
due to the horrific circumstances in those

0:26:08.621,0:26:15.020
congregate settings due to Covid-19

0:26:15.020,0:26:20.620
and the failure to provide

0:26:20.620,0:26:26.470
appropriate protections for people with

0:26:26.470,0:26:33.292
disabilities in institutional settings. The ADA

0:26:33.292,0:26:40.611
back in 1990, very clearly gave people with

0:26:40.611,0:26:52.565
disabilities significant rights and even when

0:26:52.565,0:27:06.484
challenged in 1999, the Olmstead Case

0:27:06.484,0:27:13.234
which was a Georgia case and two

0:27:13.234,0:27:19.108
women, Lois and Elaine, Lois Curtis,

0:27:19.108,0:27:20.909
an incredible woman

0:27:20.909,0:27:24.972
I've had the pleasure of being with on

0:27:24.972,0:27:30.509
a number of occasions. The two of them

0:27:30.509,0:27:35.264
demanded that they had a right

0:27:35.264,0:27:39.134
to live in the most integrated setting appropriate

0:27:39.134,0:27:45.409
to their needs and the decision, the case

0:27:45.409,0:27:47.782
went all the way to the supreme ccourt

0:27:47.782,0:27:54.533
and I was among those who

0:27:54.533,0:27:58.629
slept out on the steps of the Supreme Court

0:27:58.629,0:28:01.954
on the night before their

0:28:01.954,0:28:03.897
case was heard and I was

0:28:03.897,0:28:07.264
among the folks who celebrated

0:28:07.264,0:28:11.021
out in front of the Supreme Court on the day

0:28:11.021,0:28:14.384
that that decision came down in favor of

0:28:14.384,0:28:20.026
Lois and Elaine's right and the rights of tens

0:28:20.026,0:28:24.028
of thousands...millions of people with

0:28:24.028,0:28:29.238
disabilities to live in the most integrated setting

0:28:29.238,0:28:31.376
appropriate for their needs.

0:28:32.485,0:28:36.994
Given that we are 21 years after that

0:28:36.994,0:28:42.370
decision, yesterday the American Civil

0:28:42.370,0:28:46.308
Liberties Union submitted a petietion

0:28:46.998,0:28:49.852
and the World Insitute on Disability joined

0:28:50.172,0:28:55.026
a number of other disability organiations in

0:28:56.216,0:29:00.221
bringing that petition demanding that

0:29:00.221,0:29:02.873
people with disabilities

0:29:02.873,0:29:08.481
be immediately relocated out of these

0:29:08.481,0:29:15.462
congregate settings. Tens of thousands of people

0:29:15.462,0:29:20.052
have died in the last hundred days

0:29:20.052,0:29:23.662
the genocide of people with disabilities

0:29:23.662,0:29:28.396
because of the failures of implementation

0:29:28.396,0:29:33.223
of that Olmstead decision and the

0:29:33.223,0:29:37.362
failures of our government to provide

0:29:37.362,0:29:42.069
the kinds of supports and services that

0:29:42.069,0:29:44.502
enable people with disabilites

0:29:44.502,0:29:49.008
to live safely and with the

0:29:49.008,0:29:50.865
support they need in place

0:29:50.865,0:29:59.701
in the community and very infuriatingly

0:30:00.461,0:30:05.200
our continued persistent calls for

0:30:05.200,0:30:09.096
people with disabilities to be adequately

0:30:09.096,0:30:13.138
served in these

0:30:14.114,0:30:17.857
in disasters, have been ignored

0:30:17.857,0:30:21.503
and the bottom line has been

0:30:21.503,0:30:25.548
that, again, over the last hundred days

0:30:27.008,0:30:30.411
tens of thousands of people with disabilities

0:30:30.411,0:30:34.482
have died. And when I was called on

0:30:34.482,0:30:36.801
saying that those were people

0:30:36.801,0:30:40.044
with disabilities. I've had conversations

0:30:40.044,0:30:44.380
with a number of senior government officials

0:30:44.380,0:30:48.125
who are like, "Why are you saying

0:30:48.125,0:30:53.101
people with disabilities... these were

0:30:53.101,0:30:58.088
old people with underlying conditions living

0:30:58.088,0:31:01.958
in nursing homes and long-term care facilities."

0:31:01.958,0:31:04.287
Well, you don't go to a nursing home because

0:31:04.287,0:31:06.899
you're old. You go to a nursing home because you

0:31:06.899,0:31:09.766
have a disability and the

0:31:09.766,0:31:12.286
supports and services you need to

0:31:12.286,0:31:14.876
stay in the community have not been given

0:31:14.876,0:31:21.556
to you and the vast majority, some would say,

0:31:21.556,0:31:25.766
all of those deaths in congregate facilities are

0:31:25.766,0:31:29.041
people with disabilities. Most of them

0:31:29.056,0:31:34.776
Black and Brown and people living

0:31:34.776,0:31:41.406
in poverty and the failures of the the

0:31:41.406,0:31:44.318
Americans with Disabilities Act and the

0:31:44.318,0:31:50.287
Olmstead decision and our government's will

0:31:50.997,0:31:54.284
to monitor and enforce this law

0:31:54.284,0:31:58.287
and the rehabilitation act have a

0:31:59.334,0:32:03.464
devastating impact on where we are today

0:32:03.464,0:32:07.497
and death of many of our siblings...

0:32:07.497,0:32:11.117
without end in sight.

0:32:12.778,0:32:16.860
Than you, Marcie. Ok, so next on to

0:32:16.860,0:32:20.099
the future with the work you've been doing

0:32:20.099,0:32:23.187
you've seen a lot of progress and barriers

0:32:23.187,0:32:25.492
If you could pick one thing to change,

0:32:25.492,0:32:28.639
or that needs to occur to have access and equality

0:32:28.639,0:32:31.319
I know that's hard, one thing

0:32:31.319,0:32:34.639
to have access and equality present in

0:32:34.639,0:32:38.764
the lives of people with disabilities what would that be?

0:32:38.764,0:32:43.722
Marcie: The one thing that must

0:32:43.722,0:32:50.194
happen: People with disabiites have civil

0:32:50.194,0:32:56.232
rights protections by law and the one thing

0:32:56.232,0:33:01.908
that must happen is that thier rights are

0:33:01.908,0:33:07.829
monitored and enforced without

0:33:07.829,0:33:14.090
exception. Following the law is not enough.

0:33:14.090,0:33:18.546
We need universal designs to

0:33:18.546,0:33:23.349
be the standard. We need accessibility and

0:33:23.349,0:33:30.077
accommodation to be readily available but

0:33:30.077,0:33:34.476
we must have monitoring and enforcement

0:33:34.476,0:33:38.786
every federal dollar is supposed to be spent

0:33:38.786,0:33:41.886
in compliance with the Rehabilitation Act

0:33:41.886,0:33:46.913
and between what the Rehab Act and

0:33:46.913,0:33:53.540
the ADA require. There should be no room

0:33:53.540,0:33:57.610
for people with those civil rights protections to

0:33:57.610,0:34:06.970
be repeatedly denied and unable to fully

0:34:06.970,0:34:11.110
participate in home and community life.

0:34:13.060,0:34:21.431
Monitoring and enforcement must be the

0:34:21.431,0:34:28.026
floor and the ceiling. But enforcing these civil rights

0:34:28.026,0:34:31.676
laws is absolutely the floor.

0:34:31.676,0:34:34.647
Thank you. So what can we do? What steps can

0:34:34.667,0:34:37.526
we as community members take right now?

0:34:38.776,0:34:44.893
Marcie: So what we can do right now is

0:34:44.893,0:34:47.789
one of my favorite sayings: "Never give up,

0:34:47.789,0:34:51.135
Never give in." Another of my favorites:

0:34:51.135,0:34:56.431
"Nothing about us without us!" We as

0:34:56.431,0:35:01.971
disability community leaders need to stick

0:35:01.971,0:35:09.108
together. We need to center our work around

0:35:10.178,0:35:16.771
people who are multiply marginalized, exluded

0:35:16.771,0:35:22.216
We need to be sure that we're not wasting

0:35:22.216,0:35:30.838
our time with infighting and the kind of

0:35:30.838,0:35:38.217
divisive, childish behavior that some folks are

0:35:38.217,0:35:45.097
still stuck on engaging in. We absolutely must

0:35:45.097,0:35:49.057
reach a hand forward and reach a hand back,

0:35:49.057,0:35:54.107
stick together and continue

0:35:54.107,0:36:11.884
relentlessly to work towards the realization of

0:36:11.884,0:36:15.657
the goal that the ADA was

0:36:15.657,0:36:18.546
written around and so many

0:36:18.546,0:36:25.343
of our siblings have fought so very hard for.

0:36:25.343,0:36:31.983
We've lost a bunch of those hard-working

0:36:31.983,0:36:38.607
visionary leaders. Many of them have been

0:36:38.607,0:36:43.663
lost in recent years. Some of them have been

0:36:43.663,0:36:50.665
lost along the way. We have an incredible

0:36:50.665,0:36:59.703
legacy to care for. We have huge opportunities to

0:36:59.703,0:37:03.930
work towards. Technology has the potential for

0:37:03.930,0:37:07.223
leveling the playing field if in fact people have

0:37:07.223,0:37:11.983
real access and the World Institute on

0:37:11.983,0:37:15.953
Disability and our commitment to

0:37:15.953,0:37:19.413
work in partnership with other

0:37:19.413,0:37:22.473
disabiity-led organizations and

0:37:22.473,0:37:28.866
our allys to make communities

0:37:28.866,0:37:32.615
stronger, more resilient for the whole

0:37:32.615,0:37:36.360
community. 'Cause when we get it right

0:37:36.360,0:37:39.990
for people with disabilities, I think

0:37:39.990,0:37:44.130
the whole community, not only benefits but

0:37:44.130,0:37:50.240
is stronger for our leadership

0:37:50.360,0:37:59.130
our contributions, our expertise

0:37:59.130,0:38:04.830
in what it takes to make daily life work for everybody.

0:38:07.807,0:38:09.963
Excelent. Thank you!