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Marcie Roth

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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
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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
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    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
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    congregate settings due to Covid-19
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    and the failure to provide
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    appropriate protections for people with
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    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
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    which was a Georgia case and two
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    women, Lois and Elaine, Lois Curtis,
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    an incredible woman
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    I've had the pleasure of being with on
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    a number of occasions. The two of them
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    demanded that they had a right
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    to live in the most integrated setting appropriate
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    to their needs and the decision, the case
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    went all the way to the supreme ccourt
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    and I was among those who
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    slept out on the steps of the Supreme Court
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    on the night before their
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    case was heard and I was
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    among the folks who celebrated
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    out in front of the Supreme Court on the day
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    that that decision came down in favor of
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    Lois and Elaine's right and the rights of tens
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    of thousands...millions of people with
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    disabilities to live in the most integrated setting
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    appropriate for their needs.
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    Given that we are 21 years after that
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    decision, yesterday the American Civil
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    Liberties Union submitted a petietion
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    and the World Insitute on Disability joined
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    a number of other disability organiations in
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    bringing that petition demanding that
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    people with disabilities
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    be immediately relocated out of these
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    congregate settings. Tens of thousands of people
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    have died in the last hundred days
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    the genocide of people with disabilities
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    because of the failures of implementation
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    of that Olmstead decision and the
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    failures of our government to provide
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    the kinds of supports and services that
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    enable people with disabilites
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    to live safely and with the
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    support they need in place
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    in the community and very infuriatingly
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    our continued persistent calls for
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    people with disabilities to be adequately
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    served in these
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    in disasters, have been ignored
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    and the bottom line has been
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    that, again, over the last hundred days
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    tens of thousands of people with disabilities
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    have died. And when I was called on
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    saying that those were people
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    with disabilities. I've had conversations
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    with a number of senior government officials
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    who are like, "Why are you saying
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    people with disabilities... these were
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    old people with underlying conditions living
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    in nursing homes and long-term care facilities."
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    Well, you don't go to a nursing home because
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    you're old. You go to a nursing home because you
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    have a disability and the
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    supports and services you need to
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    stay in the community have not been given
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    to you and the vast majority, some would say,
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    all of those deaths in congregate facilities are
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    people with disabilities. Most of them
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    Black and Brown and people living
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    in poverty and the failures of the the
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    Americans with Disabilities Act and the
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    Olmstead decision and our government's will
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    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 death of many of our siblings...
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    without end in sight.
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    Than you, Marcie. Ok, so next on to
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    the future with the work you've been doing
  • 32:20 - 32:23
    you've seen a lot of progress and barriers
  • 32:23 - 32:25
    If you could pick one thing to change,
  • 32:25 - 32:29
    or that needs to occur to have access and equality
  • 32:29 - 32:31
    I know that's hard, one thing
  • 32:31 - 32:35
    to have access and equality present in
  • 32:35 - 32:39
    the lives of people with disabilities what would that be?
  • 32:39 - 32:44
    Marcie: The one thing that must
  • 32:44 - 32:50
    happen: People with disabiites have civil
  • 32:50 - 32:56
    rights protections by law and the one thing
  • 32:56 - 33:02
    that must happen is that thier rights are
  • 33:02 - 33:08
    monitored and enforced without
  • 33:08 - 33:14
    exception. Following the law is not enough.
  • 33:14 - 33:19
    We need universal designs to
  • 33:19 - 33:23
    be the standard. We need accessibility and
  • 33:23 - 33:30
    accommodation to be readily available but
  • 33:30 - 33:34
    we must have monitoring and enforcement
  • 33:34 - 33:39
    every federal dollar is supposed to be spent
  • 33:39 - 33:42
    in compliance with the Rehabilitation Act
  • 33:42 - 33:47
    and between what the Rehab Act and
  • 33:47 - 33:54
    the ADA require. There should be no room
  • 33:54 - 33:58
    for people with those civil rights protections to
  • 33:58 - 34:07
    be repeatedly denied and unable to fully
  • 34:07 - 34:11
    participate in home and community life.
  • 34:13 - 34:21
    Monitoring and enforcement must be the
  • 34:21 - 34:28
    floor and the ceiling. But enforcing these civil rights
  • 34:28 - 34:32
    laws is absolutely the floor.
  • 34:32 - 34:35
    Thank you. So what can we do? What steps can
  • 34:35 - 34:38
    we as community members take right now?
  • 34:39 - 34:45
    Marcie: So what we can do right now is
  • 34:45 - 34:48
    one of my favorite sayings: "Never give up,
  • 34:48 - 34:51
    Never give in." Another of my favorites:
  • 34:51 - 34:56
    "Nothing about us without us!" We as
  • 34:56 - 35:02
    disability community leaders need to stick
  • 35:02 - 35:09
    together. We need to center our work around
  • 35:10 - 35:17
    people who are multiply marginalized, exluded
  • 35:17 - 35:22
    We need to be sure that we're not wasting
  • 35:22 - 35:31
    our time with infighting and the kind of
  • 35:31 - 35:38
    divisive, childish behavior that some folks are
  • 35:38 - 35:45
    still stuck on engaging in. We absolutely must
  • 35:45 - 35:49
    reach a hand forward and reach a hand back,
  • 35:49 - 35:54
    stick together and continue
  • 35:54 - 36:12
    relentlessly to work towards the realization of
  • 36:12 - 36:16
    the goal that the ADA was
  • 36:16 - 36:19
    written around and so many
  • 36:19 - 36:25
    of our siblings have fought so very hard for.
  • 36:25 - 36:32
    We've lost a bunch of those hard-working
  • 36:32 - 36:39
    visionary leaders. Many of them have been
  • 36:39 - 36:44
    lost in recent years. Some of them have been
  • 36:44 - 36:51
    lost along the way. We have an incredible
  • 36:51 - 37:00
    legacy to care for. We have huge opportunities to
  • 37:00 - 37:04
    work towards. Technology has the potential for
  • 37:04 - 37:07
    leveling the playing field if in fact people have
  • 37:07 - 37:12
    real access and the World Institute on
  • 37:12 - 37:16
    Disability and our commitment to
  • 37:16 - 37:19
    work in partnership with other
  • 37:19 - 37:22
    disabiity-led organizations and
  • 37:22 - 37:29
    our allys to make communities
  • 37:29 - 37:33
    stronger, more resilient for the whole
  • 37:33 - 37:36
    community. 'Cause when we get it right
  • 37:36 - 37:40
    for people with disabilities, I think
  • 37:40 - 37:44
    the whole community, not only benefits but
  • 37:44 - 37:50
    is stronger for our leadership
  • 37:50 - 37:59
    our contributions, our expertise
  • 37:59 - 38:05
    in what it takes to make daily life work for everybody.
  • 38:08 - 38:10
    Excelent. Thank you!
Title:
Marcie Roth
Video Language:
English
Team:
ABILITY Magazine
Duration:
38:10
Isaiah Githuka published anglicky subtitles for Marcie Roth
Isaiah Githuka edited anglicky subtitles for Marcie Roth
Page Turner published anglicky subtitles for Marcie Roth
Page Turner edited anglicky subtitles for Marcie Roth
Page Turner edited anglicky subtitles for Marcie Roth
Daisy Stobbe edited anglicky subtitles for Marcie Roth
Daisy Stobbe edited anglicky subtitles for Marcie Roth
Daisy Stobbe edited anglicky subtitles for Marcie Roth
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