WEBVTT

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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.

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Thank you Marcie.

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Hi there, I’m Marcie Roth

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And I have been working in disability rights

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For my whole adult life,

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And actually, since I was a freshman in high school.

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I am currently the executive director and CEO of the World Institute on Disability

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And I have been working over the years in services

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for people living in residential programs early

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in my career with people in,

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children in school settings,

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people in vocational rehabilitation,

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and then people in community living environments,

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that along the way, I became very involved in disability rights

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and very involved in the early days of advocacy

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before the ADA was introduced.

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And then I worked for disability advocacy organizations almost ever since.

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In addition to my own disability,

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I’m also the parent of two

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now adults with disabilities.

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My husband also has a disability,

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and much of my family also happen to be people with disabilities

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so disability rights is just a part of

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everything I am and most everything I do.

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I did spend from 2001 and onward

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focusing very much on what happens for people with disabilities

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before, during, and after disasters.

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And that’s been a real particular laser focus of mine ever since,

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and in fact, I’ve had the opportunity

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as an appointee in the Obama administration

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to spend just about 8 years at FEMA,

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establishing FEMA’s Office of Disability Integration Coordination,

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and building a cadre of disability experts

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of the same pond, supporting governors

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and emergency managers and most particularly

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engaging people with disabilities and disability organizations

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in emergency preparedness

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and throughout disaster response recovery and mitigation.

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So one last piece since I’ve been with

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the World Institute on Disability since last September,

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my ongoing focus on global disability rights has really been

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something that I’ve had much more opportunity to e actively involved in

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and I have spent the time since joining

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WID building a strategic planning process

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and supporting the organizations to establish new priorities,

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taking a look at the organization’s mission

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and very recently establishing four particular areas of focus

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for the organization as we move forward.

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Thank you Marcie. Excellent, okay

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

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so it’s making extra sound whenever I unmute

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

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Okay, so the first question is about the past.

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So tell of your first memory realizing that there were

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accessibility issues, discrimination, or lack of inclusion.

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What is your personal story or connection

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to the American’s with Disabilities Act? What do you remember

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about the day that it was signed, if applicable?

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And what was the impact on you and on others?

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Remember to tap something so that the camera shifts to you

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before you start.

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I first became aware of disability at a very young age.

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I had a best friend in first grade, his name was Gregory,

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and he and I were just wonderful friends.

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We spent a lot of time together,

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and then all of the sudden one day, Gregory was gone,

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and I didn’t know what happened to him or where he went

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and it wasn’t until many years later

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that I found out that Gregory had Down Syndrome,

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and he had been removed from my Kindergarten class,

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and first grade I think it was at that point,

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and apparently he had been sent to some other school somewhere.

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And the loss of his friendship was pretty surprising

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and I didn’t understand, you know, where he went.

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Looking back on it it’s kind of peculiar that we didn’t get to still be friends

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‘cause he didn’t move away, he just stopped going to my school.

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But, I...

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I remember just being confused and then over the next number of years,

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I lived in a town that was also the home of Save the Children,

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and I was always very interested in the work that Save the Children was doing,

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and I am embarrassed to admit that my earliest involvement

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in humanitarian work was from a, you know, very charity-model approach,

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and I spent a lot of my childhood raising money for Save the Children,

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and getting involved in other activities that were very much following

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the charity-pity model and certainly not a model of

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making space for and supporting and lifting up other people with disabilities.

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the onset of my disability wasn't until 
many years later,

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but when I was in highschool I had a requirement

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to do community service I had and opportunity to do

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or had an obligation to do community service

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And I started off...this was the year of the

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first Earth Day and I started crushing glass

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at the local recycling center. I turned out

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that was really boring but lots of my

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classmates were volunteering at a state institution

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for people with disabilities and I joined them

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once a week and looking back on it again it was

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pretty shocking that at 13 years old I was assigned

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as the teacher of a classroom of 30 adults

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who had never had the opportunity to attend

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school and they now had a 13 year old teacher

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once a week. Needless to say, I learned

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way more from them than they learned

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from me bug we had a lot of fun and many of them became

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friends very much along the rest of my path

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unfortunately, some of them are no longer alive

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but there are a couple of people who are

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very much a part of my life and fortunately

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they were successful in liberating themselves

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from that state institution, so they and

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many others taught me a lot but the real

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pivotal experience for me, I was working back

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at that state institution. This was my first

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paid job in disability services and I had been

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hired to work in what was called a cottage

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for 40 women with intellectual disabilities

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and this cottage was on beautiful grounds but the women lived in a building with 20 on one side 20 on the other side

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and my responsibilities included assisting them in bathing and getting dressed

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and in eating. many of them were unable to

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feed themselves. Some because they had

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never been given the opportunity and others

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because of their physical disability and

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a lack of any sort of adaptive utensils or adaptive equipment

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as I was feeding people it was the same every

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day. A plate would come out and there were

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3 mounds of food on the plate. One mound

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was alway brown one mound was always green

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and one mound was always white. The meat

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the vegetable and the starch, and I know that

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people like to eat their meal different

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ways. There would also be a desert every

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day, a jello or ice cream, again in a

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mound.and I would spend time with each of

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the individuals who were having their meal

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and we'd be working together trying to

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figure out, did they prefer to eat their desert first?

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Did they prefer

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a little bit of the brown and a little

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bit of the white on the fork? Did they not

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want their food touching? And so I would

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work back and forth with them to try to

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figure out what their preference was and

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I got in trouble 'cause I was spending too

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much time and ultimately I was moved

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to a different position because I was

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taking too much time giving people an

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opportunity to make some choices and

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express preferences.

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So that was extremely pivitol, and in many ways,

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those early experiences have really totally

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driven who I am and what

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I believe all these years later.

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In terms of the Americans with Disabilities Act

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I had a very close personal experience with

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what was then called Public Law 94142:

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The Education of All Handicapped Act,

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later on renamed The Individuals with Disabiities Act

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IDEA, and I had a very personal family experience

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with IDEA and became aware of legislative initiatives

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and how the IDEA had just been passed

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and then I started to become more aware

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of the work being done, back in the 70's.

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Work being done on some other legislative

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initiatives, the 504, the passage of the

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Rehabilitation Act, followed by the 504

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sit-in in San Francisco to get the

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regulations put in place. That really

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caught my attention. And between the

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little bits of information I was getting

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there and the work that I was doing

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and then becomming a full-time

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advocate. Going to work for an

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independent living center in 1982.

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I then became extremely involved in

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systems change and how to develop

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policy, how to organize and support the

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rights, voices and preferences of other

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people and because I lived in Connecticut and

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the original author of the Americans with

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Disabilities Act, the first time the bill

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was introduced was Senator Will Weiker

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of Connecticut and Senator Weiker,

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father of a great young man who

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had Down Syndrome, Senator Weiker

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was very involved with the disability

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advocacy community in Connecticut and

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I then had the incredible opportunity to

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go to Boston and testify at one of

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the, Congressman Major Owens feild hearings

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on the Americans with Disabiities Act so

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of course that first time around

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the bill didn't pass.

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But boy oh boy, were we revved up

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and in the passage of the ADA

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...

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In the period in which, once the bill

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was reintroduced and folks were organizing

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I remember that we had stacks and stacks

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of bright pink postcards and we were

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organizing folks across the state to sign

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those postcards supporting passage

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of the ADA and then...

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This was sort of a wonderful

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but maybe a little bit misleading experience

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we actually were successful! The bill got

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passed! And I remember thinking

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well this wasn't that hard, we had to

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go at it twice but, this wasn't so hard;

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lets take on some more legislation so

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turns out it wasn't as easy as it looked to me

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is wasn't just about hot pink post cards

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and meetings and marches.

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That all helped but even that, sometimes

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these days, doesn't seem to be enough

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to change policy.

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That said, that's my earliest journey

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to 1990.

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Thank you Marcie. Ok, were's going to the present now

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Just so you know, I have another interview at

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2, so we're gonna have 3 more sections

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the present, the future

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and the call to action so just to

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pace yourself within that.

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So, the present: Has the ADA made a

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difference. Tell us about your "aha moment"

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that told you that the ADA is or isn't making

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a difference and to what extent

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based on your areas of passions and

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expertise where you see or not see the impact of the ADA

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Marcie: So the ADA has had a huge and sweeping

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impact and it's important for me to begin, as

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I talk about the present day, as we're embarking

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on ADA30, it's really important to start with

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how much things absolutely things have changed

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so certainly some of the architectural

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barrier removal efforts.

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some of the significant

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improvements in effective

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equally effective communication

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some of the requirements around programs.

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All of those

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have significantly changed...often.

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There have been many

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great initiatives.

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Over the years

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But we always had to maintain a relentess

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battle to not let anything slip

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to no lose any sort of momentum

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towards accessibility.

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If we look away for a minute

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our rights will be swept away from us

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and I can certainly talk about the very

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present day...and what I have to say about

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where we are today...

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is not great. So I do want to take

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a little bit more time to call out the

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significant progress in so many aspects of

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daily life, in which,

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we can call out failures of ADA compliance,

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enforcement of the law, but it is

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often times in comparrison

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to examples where it's working so

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when transportation is not accessible

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we're calling it out because we know the good

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and promising practices

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that have been in place

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for transportation accessiblity

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make the failures so much more egregious... in housing

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in employment, in the kinds of assistive devices

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that are available. The universal design

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of places and things...all of that

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points to the examples of where we are

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getting it right and in stark contrast the areas

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where we are egregiously getting it wrong.

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And I have to say that it's just very recently, I

NOTE Paragraph

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have lead my organization's involvement in a

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petition to the US department of Health and Human Services

00:25:47.207 --> 00:25:55.790
demanding that people with disabilities be immediately relocated

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out of nursing homes and other congregate settings

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due to the horrific circumstances in those

00:26:08.621 --> 00:26:15.020
congregate settings due to Covid-19

00:26:15.020 --> 00:26:20.620
and the failure to provide

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appropriate protections for people with

00:26:26.470 --> 00:26:33.292
disabilities in institutional settings. The ADA

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back in 1990, very clearly gave people with

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disabilities significant rights and even when

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challenged in 1999, the Olmstead Case

00:27:06.484 --> 00:27:13.234
which was a Georgia case and two

00:27:13.234 --> 00:27:19.108
women, Lois and Elaine, Lois Curtis,

00:27:19.108 --> 00:27:20.909
an incredible woman

00:27:20.909 --> 00:27:24.972
I've had the pleasure of being with on

00:27:24.972 --> 00:27:30.509
a number of occasions. The two of them

00:27:30.509 --> 00:27:35.264
demanded that they had a right

00:27:35.264 --> 00:27:39.134
to live in the most integrated setting appropriate

00:27:39.134 --> 00:27:45.409
to their needs and the decision, the case

00:27:45.409 --> 00:27:47.782
went all the way to the supreme ccourt

00:27:47.782 --> 00:27:54.533
and I was among those who

00:27:54.533 --> 00:27:58.629
slept out on the steps of the Supreme Court

00:27:58.629 --> 00:28:01.954
on the night before their

00:28:01.954 --> 00:28:03.897
case was heard and I was

00:28:03.897 --> 00:28:07.264
among the folks who celebrated

00:28:07.264 --> 00:28:11.021
out in front of the Supreme Court on the day

00:28:11.021 --> 00:28:14.384
that that decision came down in favor of

00:28:14.384 --> 00:28:20.026
Lois and Elaine's right and the rights of tens

00:28:20.026 --> 00:28:24.028
of thousands...millions of people with

00:28:24.028 --> 00:28:29.238
disabilities to live in the most integrated setting

00:28:29.238 --> 00:28:31.376
appropriate for their needs.

00:28:32.485 --> 00:28:36.994
Given that we are 21 years after that

00:28:36.994 --> 00:28:42.370
decision, yesterday the American Civil

00:28:42.370 --> 00:28:46.308
Liberties Union submitted a petietion

00:28:46.998 --> 00:28:49.852
and the World Insitute on Disability joined

00:28:50.172 --> 00:28:55.026
a number of other disability organiations in

00:28:56.216 --> 00:29:00.221
bringing that petition demanding that

00:29:00.221 --> 00:29:02.873
people with disabilities

00:29:02.873 --> 00:29:08.481
be immediately relocated out of these

00:29:08.481 --> 00:29:15.462
congregate settings. Tens of thousands of people

00:29:15.462 --> 00:29:20.052
have died in the last hundred days

00:29:20.052 --> 00:29:23.662
the genocide of people with disabilities

00:29:23.662 --> 00:29:28.396
because of the failures of implementation

00:29:28.396 --> 00:29:33.223
of that Olmstead decision and the

00:29:33.223 --> 00:29:37.362
failures of our government to provide

00:29:37.362 --> 00:29:42.069
the kinds of supports and services that

00:29:42.069 --> 00:29:44.502
enable people with disabilites

00:29:44.502 --> 00:29:49.008
to live safely and with the

00:29:49.008 --> 00:29:50.865
support they need in place

00:29:50.865 --> 00:29:59.701
in the community and very infuriatingly

00:30:00.461 --> 00:30:05.200
our continued persistent calls for

00:30:05.200 --> 00:30:09.096
people with disabilities to be adequately

00:30:09.096 --> 00:30:13.138
served in these

00:30:14.114 --> 00:30:17.857
in disasters, have been ignored

00:30:17.857 --> 00:30:21.503
and the bottom line has been

00:30:21.503 --> 00:30:25.548
that, again, over the last hundred days

00:30:27.008 --> 00:30:30.411
tens of thousands of people with disabilities

00:30:30.411 --> 00:30:34.482
have died. And when I was called on

00:30:34.482 --> 00:30:36.801
saying that those were people

00:30:36.801 --> 00:30:40.044
with disabilities. I've had conversations

00:30:40.044 --> 00:30:44.380
with a number of senior government officials

00:30:44.380 --> 00:30:48.125
who are like, "Why are you saying

00:30:48.125 --> 00:30:53.101
people with disabilities... these were

00:30:53.101 --> 00:30:58.088
old people with underlying conditions living

00:30:58.088 --> 00:31:01.958
in nursing homes and long-term care facilities."

00:31:01.958 --> 00:31:04.287
Well, you don't go to a nursing home because

00:31:04.287 --> 00:31:06.899
you're old. You go to a nursing home because you

00:31:06.899 --> 00:31:09.766
have a disability and the

00:31:09.766 --> 00:31:12.286
supports and services you need to

00:31:12.286 --> 00:31:14.876
stay in the community have not been given

00:31:14.876 --> 00:31:21.556
to you and the vast majority, some would say,

00:31:21.556 --> 00:31:25.766
all of those deaths in congregate facilities are

00:31:25.766 --> 00:31:29.041
people with disabilities. Most of them

00:31:29.056 --> 00:31:34.776
Black and Brown and people living

00:31:34.776 --> 00:31:41.406
in poverty and the failures of the the

00:31:41.406 --> 00:31:44.318
Americans with Disabilities Act and the

00:31:44.318 --> 00:31:50.287
Olmstead decision and our government's will

00:31:50.997 --> 00:31:54.284
to monitor and enforce this law

00:31:54.284 --> 00:31:58.287
and the rehabilitation act have a

00:31:59.334 --> 00:32:03.464
devastating impact on where we are today

00:32:03.464 --> 00:32:07.497
and death of many of our siblings...

00:32:07.497 --> 00:32:11.117
without end in sight.

00:32:12.778 --> 00:32:16.860
Than you, Marcie. Ok, so next on to

00:32:16.860 --> 00:32:20.099
the future with the work you've been doing

00:32:20.099 --> 00:32:23.187
you've seen a lot of progress and barriers

00:32:23.187 --> 00:32:25.492
If you could pick one thing to change,

00:32:25.492 --> 00:32:28.639
or that needs to occur to have access and equality

00:32:28.639 --> 00:32:31.319
I know that's hard, one thing

00:32:31.319 --> 00:32:34.639
to have access and equality present in

00:32:34.639 --> 00:32:38.764
the lives of people with disabilities what would that be?

00:32:38.764 --> 00:32:43.722
Marcie: The one thing that must

00:32:43.722 --> 00:32:50.194
happen: People with disabiites have civil

00:32:50.194 --> 00:32:56.232
rights protections by law and the one thing

00:32:56.232 --> 00:33:01.908
that must happen is that thier rights are

00:33:01.908 --> 00:33:07.829
monitored and enforced without

00:33:07.829 --> 00:33:14.090
exception. Following the law is not enough.

00:33:14.090 --> 00:33:18.546
We need universal designs to

00:33:18.546 --> 00:33:23.349
be the standard. We need accessibility and

00:33:23.349 --> 00:33:30.077
accommodation to be readily available but

00:33:30.077 --> 00:33:34.476
we must have monitoring and enforcement

00:33:34.476 --> 00:33:38.786
every federal dollar is supposed to be spent

00:33:38.786 --> 00:33:41.886
in compliance with the Rehabilitation Act

00:33:41.886 --> 00:33:46.913
and between what the Rehab Act and

00:33:46.913 --> 00:33:53.540
the ADA require. There should be no room

00:33:53.540 --> 00:33:57.610
for people with those civil rights protections to

00:33:57.610 --> 00:34:06.970
be repeatedly denied and unable to fully

00:34:06.970 --> 00:34:11.110
participate in home and community life.

00:34:13.060 --> 00:34:21.431
Monitoring and enforcement must be the

00:34:21.431 --> 00:34:28.026
floor and the ceiling. But enforcing these civil rights

00:34:28.026 --> 00:34:31.676
laws is absolutely the floor.

00:34:31.676 --> 00:34:34.647
Thank you. So what can we do? What steps can

00:34:34.667 --> 00:34:37.526
we as community members take right now?

00:34:38.776 --> 00:34:44.893
Marcie: So what we can do right now is

00:34:44.893 --> 00:34:47.789
one of my favorite sayings: "Never give up,

00:34:47.789 --> 00:34:51.135
Never give in." Another of my favorites:

00:34:51.135 --> 00:34:56.431
"Nothing about us without us!" We as

00:34:56.431 --> 00:35:01.971
disability community leaders need to stick

00:35:01.971 --> 00:35:09.108
together. We need to center our work around

00:35:10.178 --> 00:35:16.771
people who are multiply marginalized, exluded

00:35:16.771 --> 00:35:22.216
We need to be sure that we're not wasting

00:35:22.216 --> 00:35:30.838
our time with infighting and the kind of

00:35:30.838 --> 00:35:38.217
divisive, childish behavior that some folks are

00:35:38.217 --> 00:35:45.097
still stuck on engaging in. We absolutely must

00:35:45.097 --> 00:35:49.057
reach a hand forward and reach a hand back,

00:35:49.057 --> 00:35:54.107
stick together and continue

00:35:54.107 --> 00:36:11.884
relentlessly to work towards the realization of

00:36:11.884 --> 00:36:15.657
the goal that the ADA was

00:36:15.657 --> 00:36:18.546
written around and so many

00:36:18.546 --> 00:36:25.343
of our siblings have fought so very hard for.

00:36:25.343 --> 00:36:31.983
We've lost a bunch of those hard-working

00:36:31.983 --> 00:36:38.607
visionary leaders. Many of them have been

00:36:38.607 --> 00:36:43.663
lost in recent years. Some of them have been

00:36:43.663 --> 00:36:50.665
lost along the way. We have an incredible

00:36:50.665 --> 00:36:59.703
legacy to care for. We have huge opportunities to

00:36:59.703 --> 00:37:03.930
work towards. Technology has the potential for

00:37:03.930 --> 00:37:07.223
leveling the playing field if in fact people have

00:37:07.223 --> 00:37:11.983
real access and the World Institute on

00:37:11.983 --> 00:37:15.953
Disability and our commitment to

00:37:15.953 --> 00:37:19.413
work in partnership with other

00:37:19.413 --> 00:37:22.473
disabiity-led organizations and

00:37:22.473 --> 00:37:28.866
our allys to make communities

00:37:28.866 --> 00:37:32.615
stronger, more resilient for the whole

00:37:32.615 --> 00:37:36.360
community. 'Cause when we get it right

00:37:36.360 --> 00:37:39.990
for people with disabilities, I think

00:37:39.990 --> 00:37:44.130
the whole community, not only benefits but

00:37:44.130 --> 00:37:50.240
is stronger for our leadership

00:37:50.360 --> 00:37:59.130
our contributions, our expertise

00:37:59.130 --> 00:38:04.830
in what it takes to make daily life work for everybody.

00:38:07.807 --> 00:38:09.963
Excelent. Thank you!