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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,
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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 in my career
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with people in, 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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then 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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befor 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 od my family 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
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focusing very much on what happens for people with disabilityes
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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 administrashion
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to spend just about 8 yeards 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
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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 four particular areas
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of focus 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
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a lot of brush today, so it's making extra sound
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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
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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 and i
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were just wonderful friends.
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We 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,
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he just stopped going to my school.
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But I 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
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Save the Children, and I was always very
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interested in the work that Save the Children
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was doing and I am embarrassed to admit
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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 Children
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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
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a model making space for and supporting and lifting
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up other people with disabilities.
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the 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 an
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opportunity to do-- or 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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attend school and they now had a
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13-year old teacher once a week.
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Needles to say, I learned way more from them
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then they learned from me, but we had a lot of fun
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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 side
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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 just had never been given the opportunity,
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and others because of their physical Disability
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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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the 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 green
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and one mount was always white.
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You know the meat, the vegetable, and the starch
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And you know I know that people like to
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eat their meals different ways.
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there would also be a dessert every day, jello or
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ice cream, somthing 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 did they prefer to have
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to eat their dessert first?
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Some people liked to do that. Did they prefer
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a little bit of the brown and a little bit
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of the white all on the same fork?
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Did they not want their food touching?
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You know and I would sort of work back and Forth
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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
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many ways you know, those early early
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experiences have really totally driven
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who I am and what I believe all these years Latter.
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In terms of the Americans with Disabilities Act
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I had a very close personal experience
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with what was then called
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"public law 94142" the Education of
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All Handicapped Act, later on renamed
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the 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
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work being done on some 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
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and then becoming a full-time advocate
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going to work for an independent living center
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in 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,
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the first time the bill was introduced was
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Senator Weicker of Connecticut, and
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Senator Weicker, father of a great young man
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who had Down Syndrome,
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Senator 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 that
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first time around, the bill didn't pass
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but boy oh boy 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 state to develop,
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to 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 a littal
-
bit 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 that hard
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I mean, you know, we had to
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go at it twice, but well this wasn't so hard.
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Let's take on some more legislation!"
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so 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.
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so that's my 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.
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So just to pace yourself within those.--thank you
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okay 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
-
expertise, where do you see or not see the
-
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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to begin 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, you know so 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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you know all of those have significantly changed
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most--- can't even say most of the time--often
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there have been many 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 lose
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any sort of momentum 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 so 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 it is oftentimes
-
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
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promising practices that have been in place
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for transportation accessiblity
-
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,
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the universal design of places and things
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all of that points to the examples of where we
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are getting it right and in stark contrast
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the areas where we egregiously getting it wrong
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and I half to say that just very recently I have
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led my organization's involvement in
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a petition to US Dept of Health and Human
-
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 horific
-
circumstances in those congregate
-
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
-
the ADA back in 1990
-
very clearly gave people with disabilityes
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significant rights, and
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even when challenged in 1999 the Olmstead case,
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which was a Georgia case, and two women
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who.. Lois and Elaine, Lois Curtiss
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an incredible woman I had the
-
pleasure of being with on a number
-
of occasions, the two of them
-
demanded that they had a right to live in
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the most integrated setting
-
appropriate to their needs,
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and the decision, the case went
-
all the way to the Supreme Court
-
and I was among those who
-
slept outside the Supreme Court on the night
-
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 desishon came
-
down in favor of Lois and Elaine's right,
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and the rights of 1000s,10s of 1000's,
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millions of people with Disabilityes
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to live in the most integrated setting
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appropriate to their needs.
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Givin we are 21 years after that decision,
-
yesterday the American Civil Liberties Union
-
submitted a petition and the World Institute
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on Disability joined a number of other
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disability organizations in bringing that petition
-
demanding that people with disabilities
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be immediately be relocated
-
out of these congregate settings
-
10s of 1000's of people have died in
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the last 100 days, the genocide
-
of people with disabilities because of
-
the failures of implementation of that
-
Olmstead decision and the failures of our
-
government to provide the kind of supports
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and services that enable
-
people with disabilities
-
to live safely and with the support they
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need in place in the community
-
and, very infuriatingly our continued
-
persistent calls for
-
people with disabilities to be
-
adequately served in these..
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in disasters have been ignored,
-
and the bottom line has been again over the
-
last 100 days 10s of 1000's of people with
-
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?
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and 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.