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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 am 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 now adults with

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disabilities. 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 everything I am and most everything I do.

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I did spend from 2001 and onward focusing very much

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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 recover and mitigation.

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So one last piece since I've been with

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the World Institute on Disabilities since last September,

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my ongoing focus on global disability rights

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has really been something that I've had

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much more opportunity to be actively

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involved in and I have spent the time since joining

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with building a strategic planning process

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and supporting the organization to establish new priorities

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taking a look at the organizations 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 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?

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What do you remember 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 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, and then

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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

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that Save the Children was doing, and I am

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embarrassed to admit that my earliest

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

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I spent a lot of my childhood raising

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money for Save the Children, and getting

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involved in other activities that were very

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much following the charity-pity model and certainly not a model

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of making space for and supporting and lifting up

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other people with disabilities.

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The on set of my disability wasn't until many years later,

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but when I was in high school, I had a

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requirement to do community service and I

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had an opportunity to do, had an obligation

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to do community service and we 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. It turned out that it

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was really boring but lots of my classmates

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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, looking back on it again it was

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pretty shocking at 13 years old I was

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assigned as the teacher of a classroom

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of 30 adults who had never had the

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opportunity to attend school and now had

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a 13 year old teacher once a week.

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Needless 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, you know, 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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still very much apart 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. This was my first paid job

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in disability services and I had been

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hired to work in what was called a cottage, for

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40 women with intellectual disabilities.

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This cottage was on beautiful ground, but

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the women lived in a building with 20 on

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one side and 20 on the other side.

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My responsibilities included assisting them

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in bathing and getting dressed and eating

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many of them were unable to feed themselves

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some because they never been given

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the opportunity and others because of

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their physical disability and a lack of any

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supportive or adaptive utensils or other equipment,

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so as I was feeding people it was the same every day.

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A plate would come out and there were 3 mounds of food on the plate. One mound was always brown

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One mound was always green

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One mound was always white, you know the meat

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the vegetable, and the starch, and I know that

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people like to eat their meals different ways, there would

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also be a dessert everyday, a jello, ice cream again in a mound.

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I would spend time with each of the individuals

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who were having their meal, and would sort of be kind of working

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together trying to figure out, did they

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prefer to eat their desert first?

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And people like to do that, did they prefer

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a little bit of brown and a little bit of white

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all on the same fork? Did they not want

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them touching, and you know I would sort of

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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 because I was spending

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to much time and ultimately, I was moved

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to a different position because I was taking

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to much time giving people and

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opportunity to make some choices and

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express some preferences. That was extremely

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pivotal and in many ways, you know, those early

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early experiences, have really, totally driven who I am

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and what I believe all of these years later.

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In terms of the American's with Disabilities Act

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I had very close personal experience with

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what was then called public law 94142:

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The Education of All Handicaps Act,

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later on renamed The Individuals with

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Disabilities Act, IDEA and I had a very personal

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family experience with IDEA and became aware

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of legislative initiatives, and how the IDEA had just been passed.

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Then I started to become more aware of the work

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being done, this was back int he 70's. Working

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being done on some other legislative initatives, the 504

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The Passage of 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 caught my attention,

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between the little bits of information I was getting there

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and the work I was doing and then becoming a full time

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advocate, going to work for an independent

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living center in 1982, I then became extremely

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involved in systems change and how to develop

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policy, how to organize, how to support

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the rights, voices and preferences of other

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people and because I lived in Connecticut and the

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original author of the American's 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, father

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of a great young man who had Down Syndrome

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Senator Welker was very involved with

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the disability advocacy community in Connecticut

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and I then had the incredible opportunity to

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go to Boston and testify and on of the

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Congressman Major Owens field of hearings

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on the American's with Disabilities Act so

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of course that first time around the bill

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didn't pass. But boy oh boy, were we revved up

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in the passage of the ADA, in the period of which

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once the bill was reintroduced

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and folks were organizing, I remember that we had

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stacks and stacks and stacks of bright pink

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post cards, and we were organizing folks across the state

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to develop, to sign those post cards supporting

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passage of the ADA and then, this was sort

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of a wonderful but maybe a miss leading experience

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we actually were successful! The bill got

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passed, I remember thinking oh well this wasn't that hard,

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we had to go at it twice but this wasn't so hard!

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Let's 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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It wasn't just about hot pink post cards, 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 to change policy.

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That's my earliest journey to 1990.

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Thank you Marcie, okay were going to present now

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just so you know I do have another interview at 2

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we are going to have three more sections.

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The present, the future and the call to

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action, so just to pace yourself within those

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So the present, has the ADA made a difference?

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Tell us about your "Aha" moment that told you

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that the ADA is or is not making a difference

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and to what extent based on your passions

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and area of expertise, where you see or

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not see the impact of the ADA.

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So the ADA has had a huge and sweeping impact

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and I... Its important for me to begin as I talk about

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the present day as were embarking on ADA 30.

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Its really important to start with, how

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much things absolutely have changed, and certainly some

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of the architectural barrier removal efforts

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some of the significant improvements in

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effective, 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, I can't even say most of the time... often.

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There have been many great initiatives

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over the years, but we always had to

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maintain a relentless battle to, to not let

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anything slip, to not lose and sort of momentum,

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towards accessibility. If we look away for

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a minute, our rights will be swept away

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from us, I can certainly talk about the

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very present day, and what I have to say

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about where we are today, is not

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great, so I do want to take a little bit

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more time to call out the significant

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progress in so many aspects of daily life,

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in which we can call out failures of ADA

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compliance, enforcement of the law.

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But it is often times in comparison to

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the examples of where it's working.

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So when transportation is not accessible

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we're calling it out because we know the

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good and the promising practices that have

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been in place for transportation accesabilty

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Make the failures so much more egregious.

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In housing, in employment, in the kinds

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of 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

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we are getting it right, In stark contrast

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the areas where we are getting it egreigously

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getting it wrong. I have to say that

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just very recently, I have lead my

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organization involvement in a petition to

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the U.S Department of Health and Human

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Services, demanding that people with

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disabilities be immediately located

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out of nursing homes and other congregate

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settings due to the horrific circumstances

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in those congregate settings, to Covid-19

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and the failure to provide appropriate

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protections for people with disabilities

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and institutional settings. The ADA back in 1990

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very clearly gave people with disabilities

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significant rights, and even when

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challenged in 1999, the homestead case

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which was a Georgia case, and two women

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who Lois and Elaine, Lois Curtis an

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incredible woman, I have had the

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pleasure of being with on a number of

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occasions. The two of them demanded that

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they had a right to live in the most intergraded

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setting appropriate to their needs.

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The decision, the case went all the way to

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the Supreme Court, and I was among

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those who slept out on the steps of

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the Supreme Court on the night before

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their case was heard. I was among the

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folks who celebrated out in front of the

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Supreme Court on the day that decision

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came down in favor of Lois and Elaine

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right and the rights of thousands, tens of

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thousands, millions of people with

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disabilities to be, to live in the most

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intergraded setting appropriate to their

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needs. Given that we are 21 years after

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that decision, yesterday the American

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Civil Liberties Union submitted a petition

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and the World Institute on Disability joined

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a number of disability organizations

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in a bringing that petition, demanding

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that people with disabilities be immediately

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relocated out of these congregate settings.

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Tens of thousands of people have died

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in the last hundred days, the genocide of

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people with disabilities because of the

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failures of implementation of that

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homestead decision and the failures of our

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government to provide that kind of support

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and services that enable people with disabilities

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to live safely and and with the support

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they need in place in the community,

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very infuriatingly, our continued persistent

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call for people with disabilities to be

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adequately served in these disasters

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have been ignored and the bottom line

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has been 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 with disabilities

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I have had conversations with a number of

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senior government officials who,

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"why are you saying people with disabilities"

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these were old people with underlying conditions

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living in nursing homes, and long term care

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facilities, look you don't go to a nursing home

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because you are old. You go to a nursing home because

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you have a disability and the supports and

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services you need to stay in the community

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have not been given to you, and that majority

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of some would say of all those deaths in

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congregate facilites are people with disabilities.

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Most of them black and brown and people

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living in poverty, and the failures of

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American's with Disabilities Act, the homestead decision and

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our governments will to monitor and force

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this law and the rehabilitation act have a

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devastating impact on where we are today

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and the depth of many of our siblings,

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Without out end in sight.

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Thank you Marcie, okay so next onto the

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future. With the work you have been doing

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you have seen a lot in terms of progress and barriers.

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If you could pick one thing to change or that needs

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to occur to have access and equality,

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I know that is hard, one thing. To have

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access and equality present in the lives

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of people with 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. The one thing that must happen

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is that their rights are monitored and enforced

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without exception. Following the law is not

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enough, we need universal designs to be

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the standard, we need accessibility

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and the accommodation to be readily available.

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But we must have monitoring and enforcement.

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Every federal dollar is supposed to be

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spent in compliance with the rehabilitation act

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and between the rehab act and what the ADA require.

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There should be no room for people with

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those civil rights protections to be repeatedly denied

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and unable to fully participate in home

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and community life. Monitoring and enforcement

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must be the floor, the ceiling. But enforcing

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these civil rights laws is absolutely

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the floor. Thank you

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So what can we do? What steps can we as community members

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take right now?

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So what we can do right now is

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one of my favorite sayings is

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"never give up, never give in"

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another favorites is

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"nothing about us, without us"

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We as disability community leaders, need

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to stick together, we need to center our work

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around people who are multiple marginalized

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excluded, we need to be sure that

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we are not wasting our time with in fighting

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and with the kind of divisive childish behavior

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that some folks are still stuck on engaging in.

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We absolutely must reach a hand forward,

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reach a hand back, stick together and

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continue relentlessly to work towards

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the realization of the goal that the ADA

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was written around and so many

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of our siblings have fought so very hard

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for, we've lost a bunch of those hard working

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visionary leaders, many of them have been

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lost in recent years, some have been lost

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along the way. We have an incredible

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legacy to care for, we have huge

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opportunities to work towards. Technology

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has the potential of leveling the

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playing field if in fact people have real access

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and the World Institute on Disability

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and our commitment to work in partnership

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with other disability lead organizations and our allies

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to make communities stronger, more resilient for

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the whole community. When we get it right

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for people with disabilities, I think the

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whole community not only benefits is stronger

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for our leadership, our contributions,

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our expertise in what it takes to make daily life

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work for everybody.

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Excellent thank you.