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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 now, and

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you'll go ahead and do your intro.

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Thank you Marcie. Hi, I'm Marcie Roth, and

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I have been working in disability rights

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for my whole adult life, since I was a

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freshman in high school. I am currently

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the executive director and CEO of the

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World Institute on Disability and I have

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been working over the years and services

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for people living in residential programs

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early in my career with people in with

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children in school settings, people in

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vocational rehabilitation, and then people

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in community living environments, then

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along the way, I became very involved in

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disability rights and very involved in

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the early days of advocacy before

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the ADA was introduced. And then I worked

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for disability advocacy organizations

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almost ever since. In addition to my own

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disability, I'm also the parent of two now

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adults with disabilities. My husband also

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has a disability and much of my family

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also happen to be people with disabilities

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so disability rights is just 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 focusing

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very much on what happens for people

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with disabilities before, during, and

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after disasters. And that's been a real

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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

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administration to spend just about 8 years

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at FEMA, establishing FEMA's Office of

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Disability Integration Coordination and

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building a cadre of disability experts of

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the same pond, supporting governors and

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emergency managers and most particularly

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engaging people with disabilities and

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disability organizations in emergency

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preparedness and throughout disaster

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response recovery and mitigation. So one

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last piece since I've been with the World

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Institute on Disability since last

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September, my ongoing focus on global

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disability rights has really been

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something that I've had much more

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opportunity to be 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 organization to

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establish new priorities, taking a look at

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the organization's mission, and very

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recently establishing for particular areas

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of focus for the organization as we move

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forward. Thank you Marcie. Excellent, okay

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I apologize that my neighbor is chipping a

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lot of brush today, so it's making a lot

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of extra sound whenever I unmute, but

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don't worry, it won't interfere with your

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recording. Okay, so the first question is

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about the past. So tell of your first

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memory realizing that there were

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accessibility issues, discrimination, or

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lack of inclusion. What is your personal

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story or connection with the American with

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Disabilities Act? What do you remember

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about the day that it was signed, if

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applicable? And what was the impact on

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you and on others? Remember to tap

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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

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very young age. I had a best friend in

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first grade. His name was Gregory, and he

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and I were just wonderful friends. We

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spent a lot of time together, and then all

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of a sudden, one day Gregory was gone

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and I didn't know what happened to him or

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where he went and it wasn't until many

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years later that I found out that Gregory

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had Down Syndrome, and he had been removed

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from my kindergarten class and first

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grade I think it was at that point. And

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apparently he had been sent to some other

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school, somewhere. And the loss of his

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friendship was pretty surprising and

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I didn't understand you know where he went

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Looking back on it, it was kind of

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peculiar that we didn't just get to still

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be friends 'cause he didn't move away, he

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just stopped going to my school. But I

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remember just being confused and then

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over the next number of years, I lived in

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a town that was also the home of Save the

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Children, and I was always very interested

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in the work that Save the Children was

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doing and I am embarrassed to admit that

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my earliest involvement in humanitarian

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work was from a very charity-model

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approach, and I spent a lot of my

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childhood raising money for Save the

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Children and getting involved in other

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activities that were very much following

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the charity-pity model and certainly not a

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model making space for and lifting

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up other people with disabilities. The

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onset of my disability wasn't until many

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years later, but when I was in high school

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I had the, I had a requirement to do...

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I can't even remember what it's called now

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community service! Sorry. I had the

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opportunity to do--I had an obligation

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to do community service and I started off

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This was the year of the first Earth Day

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and I started crushing glass at the local

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recycling center and it turned out that

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that was really boring but lots of my

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classmates were volunteering at a state

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institution for people with disabilities

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and I joined them once a week and looking

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back on it again, it was pretty shocking

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that at 13 years old, I was assigned as

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the teacher of a classroom of 30 adults

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who had never had the opportunity to

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really attend school and they now had a

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13-year old teacher once a week. Needless

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to say, I learned way more from them than

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they learned from me, but we had a lot of

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fun and many of them became friends very

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much along the rest of my path and

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unfortunately, some of them are no longer

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alive but there are a couple of people who

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are still very much a part of my life and

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fortunately, they were successful in

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liberating themselves from that state

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institution. And so they and many others

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taught me a lot. But the real pivotal

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experience for me, I was working back at

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that state institution, it was my first

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paid job in disability services and I had

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been hired to work in what was called a

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"cottage" for 40 women with intellectual

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disabilites and this "cottage" was on

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beautiful grounds but the women lived in a

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building 20 on one side, 20 on the other

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side and my responsibilities included

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assisting them in bathing and getting

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dressed and in eating. Many of them were

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unable to feed themselves. Some because

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they had never been given the opportunity,

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others because of their physical

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disability and a lack of any sort of

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adapted utensils or other equipment.

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So as I was feeding people, the sort of

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routine was the same every day. A plate

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would come out, and there would be 3

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mounds of food on the plate. One mound was

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always brown, one mound was always

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green, and one mount was always white.

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You know the meat, the vegetable, and the

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starch. And I know that people like to

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eat their meals in different ways. There

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would also be a dessert every day, jello or

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ice cream, again always in a mound.

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And so I would spend time with each of the

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individuals who were having their meal

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and would sort of be working together,

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trying to figure out if they preferred to

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have, to eat their dessert first? Some

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people liked to do that. Did they prefer a

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little bit of the brown and a little bit

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of the white all on the same fork? Did

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they not want their food touching? You

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know and I would sort of work back and

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forth with them to try and figure out what

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their preference was and I got in trouble

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because I was spending too much time

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and ultimately, I was moved to a different

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position because I was taking too much

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time giving people an opportunity to make

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some choices and express some preferences.

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So that was extremely pivotal and in many

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ways you know, those early early

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experiences have really totally driven who

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I am and what I believe all these years

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later. In terms of the Americans with

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Disability Act, I had a very close

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personal experience with what was then

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called "public law 94142" the Education of

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All Handicapped Act, later on renamed

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Individuals with Disabilities Act, IDEA

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and I had a very personal family

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experience with IDEA and became aware of

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legislative initiatives and how the IDEA

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had just been passed. And then I started

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to become more aware of the work being

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done. And this was back in the 70s and

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work being done of other legislative

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initiatives and the 504, the passage of

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the Rehabilitation Act, followed by the

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504 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 little

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bits of information I was getting there

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and the work I was doing and then

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becoming a full-time advocate going to

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work for an independent living center in

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1982, I then became extremely involved

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in systems change and how to develop

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policy, how to organize, how to support

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the rights and voices and preferences of

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other people and because I lived in

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Connecticut and the original author of

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the Americans with Disability Act, the

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first time that it was introduced was

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Senator Weicker of Connecticut, and

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Senator Weicker, father of a great young

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man who had Down Syndrome, Senator

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Weicker was very involved with the

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disability advocacy community in

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Connecticut, and I then had the incredible

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opportunity to go to Boston and testify

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at one of the Congress major hearings--

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field hearings on the Americans with

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Disability Act. So you know of course the

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first time around, the bill didn't pass

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but we were revved up and in the

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passage of the ADA, in the period in which

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once the bill was re-introduced and votes

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were organizing, I remember that we had

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stacks and stacks and stacks of bright

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pink postcards and we were organizing

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folks across the states to develop, to

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sign those postcards supporting the

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passage of the ADA and then you know this

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was sort of a wonderful but maybe

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misleading experience, we actually were

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successful. The bill got passed! And I

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remember thinking "Oh, well this wasn't

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that hard. I mean, you know, we had to go

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at it twice, but well this wasn't so hard.

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Let's take on some more legislation!" And

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it turns out that it wasn't as easy

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as it looked to me. It wasn't just about

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hot pink postcards and meetings and

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marches--that all helped but even that

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sometimes these days, it doesn't seem to

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be enough to change policy. So that is my

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earliest journey to 1990.

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Thank you Marcie. Okay we're going to the

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present now. So just so you know, I do

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

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going to have 3 more sections: the present

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the future, and the call to action. So

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just to pace yourself within the--thank

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you. So within the present, has the ADA

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made a difference? Tell us about your

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"aha" moment that told you that the ADA is

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or is not making a difference and to what

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extent based on your passions and areas of

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expertise, where do you see or not see the

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impact of the ADA?

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So the ADA has had a huge

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and sweeping impact

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and it's important for me

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as I begin to talk

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about the present day as we're embarking

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on ADA 30 it's really important to start

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with how much things absolutely have

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changed, certainly some of the

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architectural barrier removal efforts,

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some of the significant improvements

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in equally effective communication,

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some of the requirements around programs,

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all of those have significantly changed

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most often can't even say most--often

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there's been really great initatives over

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the years but we've always had to maintain

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a relentless battle to not

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let anything slip, to not let

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anything 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

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the very present day

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and what I have to say about where

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we are today is not great

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and I do want to take a little more time

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to call out the significant progress;

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in so many aspects of daily life

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in which we can

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call out failures of ADA compliance,

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enforcement of the law but oftentimes

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in comparison to the examples of where

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it's working, so when transportation

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is not accessible, we're calling it out

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because we know the good and promising

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practices that have been in place

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for transportation accessiblity

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make the failures so much more egregious

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in housing, in employment, in the kinds of

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assistive devices that are available, the

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universal design of places and things

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all of that points to examples of where we

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are getting it right and in stark contrast

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where the areas where we are

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egregiously getting it wrong

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and just very recently I have led

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my organization's involvement in

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a petition to US Dept of Health and Human

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Services demanding that people with

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disabilities be immediately relocated

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out of nursing homes and other congregate

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settings due to the

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horrific circumstances in those congregate

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settings due to covid-19

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and the failure to provide appropriate protections

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for people with disabilities

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in institutional settings

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the ADA back in 1990

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very clearly gave people with

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disabilities significant rights, and

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even when challenged in 1999 the Olmstead

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case, which was a Georgia case, two women

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Lois and Elaine, Lois Curtiss

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an incredible woman I had the

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pleasure of being with on a number

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of occasions, the two of them

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demanded that they had a right to live in

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the most integrated setting

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most appropriate to their needs,

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and the decision, the case went

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all the way to the Supreme Court

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and I was among those who

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slept outside the Supreme Court the night

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before their case was heard

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and I was among

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the folks who celebrated out in front of

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the Supreme Court the day that case came

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down in favor of Lois and Elaine's right,

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and the rights of 10s of 1000's,

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millions of people with

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disabilities to live in the most

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integrated setting

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appropriate to their needs. Given

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we are 21 years after that decision,

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yesterday American Civil Liberties Union

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submitted

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a petition and the World Institute of

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Disability joined a number of

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other disability

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organizations in bringing that petition

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demanding that people with disabilities

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immediately be relocated

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out of these congregate settings

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10s of 1000's of people have died in

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the last 100 days, the genocide

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of people with disabilities because of

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the failures of implementation of that

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Olmstead decision and the failures of our

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government to provide the kind of supports

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and services that enable

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people with disabilities

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to live safely and with the support they

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need in place in the community

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and, very infuriatingly our consistently

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persistent calls for

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people with disabilities to be

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adequately served in these, in these

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disasters have been ignored, and again

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the bottom line has been that the last 100

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days 10s of 1000's of people with

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disabilities have died. And when I was

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called on, saying that those were

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people with disabilities I have had

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conversations with a number of senior

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government officials who, like, why are

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you saying people with disabilities? And

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you know, these were old people with

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underlying conditions living in nursing

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homes and in long term care facilities.

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Well you don't go to a nursing home

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because you're old, you go to a nursing

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home because you have a disability and the

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supports and services you need to stay in

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the community have not been given to you.

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And the vast majority, some would say, all of

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those deaths in congregate settings are

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people with disabilities, most of them

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black and brown and people living in

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poverty. And the failures of Americans

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with Disabilities Act, the Olmstead

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decision, and our government's

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will to monitor and enforce this law

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and the rehabilitation act have a

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devastating impact on where we are today.

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And the death of many of our siblings.

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Without any end in sight.

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Thank you Marcie, Ok. So next on to the

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future, with the work that you've been

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doing you've seen a lot of progress

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and barriers. If you could pick one thing

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to change or that needs to occur to have

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access and equality--I know that's hard

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--one thing to have equality and access

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present in the lives of people with

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disabilities what would that be?

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The one thing that must happen:

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people with disabilities have civil rights

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protections by law and the one thing

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that must happen

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is that their rights are monitored and

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enforced without exception. Following

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the law is not enough, we need universal

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design to be the standard we need

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accessibility and accommodation

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to be readily available but we must have

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monitoring and enforcement. Every

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federal dollar is supposed to be spent in

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compliance with the rehabilitation act

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and between the Rehab Act and the ADA

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they require, their should be, no

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rue for those people with civil rights

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protections to be repeatedly denied

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and unable to fully participate

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in home and community life. Monitoring

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and enforcement must be the floor

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I have a ceiling but enforcing

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these civil rights laws is absolutely

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the floor. Thank you. What can we do?

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What can we as community members

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take right now? So what we can do right

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now is, you know, one of my favorite

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sayings, "never give up, never give in"

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another of my favorites, "nothing about us

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without us" we as disability community

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leaders need to stick together, we need to

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center our work around people who are

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multiply marginalized, excluded

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we need to be sure that we are not wasting

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our time with infighting and with

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a kind of divisive childish behavior that

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some folks are still stuck in engaging in

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we absolutely must reach a hand forward

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reach a hand back stick together

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and continue relentlessly to work

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towards the realization of the goal

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that the ADA was written around and so

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many of our siblings have fought so very

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hard for. We've lost a bunch of those

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hardworking visionary leaders; many of them

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have been lost in recent years, some of them

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have been lost along the way, we have an

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incredible legacy to care for, we have

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huge opportunities to work towards

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technology has the potential for leveling

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the playing field if in fact people have

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real access and the World Institute on

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Disability and our commitment to

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work in partnership with other

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disability lead organizations and

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our allies to make communities

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stronger, more resilient for the whole

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community because when we get it right

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for people with disabilities I think

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the whole community not only benefits

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but is stronger for our leadership, our

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contributions, our expertise in

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what it takes to make daily life work for

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everybody. Excellent, thank you.