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← Marcie Roth

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  1. You'll see in the corner the record button
  2. So you should see that it's recording now,
  3. and I'm going to mute myself
  4. and you'll go ahead and do your intro.
  5. Thank you Marcie.
  6. Hi there, I'm Marcie Roth
  7. and I have been working
    in disability rights
  8. for my whole adult life,
  9. and actually, since I was
    a freshman in high school.
  10. I am currently the executive director and
    CEO of the World Institute on Disability,
  11. and I have been working
    over the years in services
  12. for people living in residential programs
    early in my career
  13. with people in,
  14. children in school settings,
  15. people in vocational rehabilitation,
  16. and then people in
    community living environments,
  17. then along the way, I
    became very involved in disability rights
  18. and very involved in the
    early days of advocacy
  19. before the ADA was introduced.
  20. And then I worked for disability advocacy
    organizations almost ever since.
  21. In addition to my own disability,
  22. I'm also the parent of two
  23. now adults with disabilities.
  24. My Husband also has a disability,
  25. and much of my family also happen
    to be people with disabilities
  26. so disability rights is just part of
  27. everything I am and most everything I do.
  28. I did spend from 2001 and onward
  29. focusing very much on what happens
    for people with disabilities
  30. before, during, and after disasters.
  31. And that's been a real particular
    laser focus of mine ever since,
  32. and in fact, I've had the opportunity
  33. as an appointee in the
    Obama administration
  34. to spend just about 8 years at FEMA,
  35. establishing FEMA's Office of
    Disability Integration Coordination,
  36. and building a cadre of disability experts
  37. of the same pond, supporting governors
  38. and emergency managers
    and most particularly
  39. engaging people with disabilities,
    and disability organizations
  40. in emergency preparedness
  41. and throughout disaster response recovery
    and mitigation.
  42. So one last piece since I've been with
  43. the World Institute on Disability
    since last September,
  44. my ongoing focus on global
    disability rights has really been
  45. something that I've had much more
    opportunity to be actively involved in
  46. and I have spent the time since joining
  47. WID building a strategic planning process
  48. and supporting the organization to
    establish new priorities,
  49. taking a look at the
    organization's mission
  50. and very recently establishing
    four particular areas of focus
  51. for the organization as we move forward.
  52. Thank you Marcie. Excellent, okay
  53. I apologize that my neighbor is chipping
    a lot of brush today,
  54. so it's making extra sound
    whenever I unmute
  55. but don't worry, it won't interfere
    with your recording.
  56. Okay, so the first question is
    about the past.
  57. So tell of your first memory
    realizing that there were
  58. accessibility issues, discrimination,
    or lack of inclusion.
  59. What is your personal story
    or connection
  60. to the American's with Disabilities Act?
    What do you remember
  61. about the day that it was signed,
    if applicable?
  62. And what was the impact on
    you and on others?
  63. Remember to tap something
    so that the camera shifts to you
  64. before you start.
  65. I first became aware of disability
    at a very young age.
  66. I had a best friend in first grade,
    his name was Gregory,
  67. and he and I were
    just wonderful friends.
  68. We spent a lot of time together,
  69. and then all of the sudden
    one day, Gregory was gone,
  70. and I didn't know what happened to him
    or where he went
  71. and it wasn't until many years later
  72. that I found out that Gregory
    had Down Syndrome,
  73. and he had been removed
    from my Kindergarten class,
  74. and first grade I think it was
    at that point,
  75. and apparently he had been sent
    to some other school somewhere.
  76. And the loss of his friendship
    was pretty surprising
  77. and I didn't understand, you know,
    where he went.
  78. Looking back on it, it's kind of peculiar
    that we didn't get to still be friends
  79. 'cause he didn't move away, he just
    stopped going to my school.
  80. But, I...
  81. I remember just being confused and then
    over the next number of years,
  82. I lived in a town that was also
    the home of Save the Children,
  83. and I was always very interested in
    the work that Save the Children was doing,
  84. and I am embarrassed to admit
    my earliest involvement
  85. in humanitarian work was from a,
    you know, very charity-model approach,
  86. and I spent a lot of my childhood
    raising money for Save the Children,
  87. and getting involved in other activities
    that were very much following
  88. the charity-pity model and certainly not
    a model of
  89. making space for and supporting and
    lifting up other people with disabilities.
  90. the onset of my disability wasn't until
    many years later,
  91. but when I was in high school,
    I had a requirement to do
  92. I can't even remember
    what it's called now!
  93. Community service! Sorry.
  94. I had an opportunity to do, or I had
    an obligation to do community service,
  95. and I started off, this was the year
    of the first Earth day
  96. and I started off crushing glass
    at the local recycling center,
  97. and it turned out that
    that was really boring,
  98. but lots of my classmates were
  99. at a state institution
    for people with disabilities,
  100. and I joined them once a week and
    looking back on it again,
  101. it was pretty shocking that at
    13 years old,
  102. I was assigned as the teacher
    of a classroom of 30 adults
  103. who had never had the opportunity
    to attend school, and they now had
  104. a 13 year old teacher once a week.
  105. Needless to say, I learned way more
    from them than they learned from me,
  106. but we had a lot of fun, and many of them
    became friends
  107. very much along the rest of my path.
  108. Unfortunately, some of them are
    no longer alive,
  109. but there are a couple of people who
    are still very much a part of my life
  110. and fortunately, they were successful in
  111. liberating themselves from
    that state institution.
  112. And so, they and many others
    taught me a lot,
  113. but the real pivotal experience for me,
    I was working back at
  114. that state institution, it was my first
    paid job in disability services,
  115. and I had been hired to work
    in what was called a "cottage"
  116. for 40 women with
    intellectual disabilities,
  117. and this "cottage" was on
    beautiful grounds,
  118. but the women lived in a building,
    20 on one side, 20 on the other side,
  119. and my responsibilities included
  120. assisting them in bathing and
    getting dressed and in eating.
  121. Many of them were unable
    to feed themselves.
  122. Some because they just had never been
    given the opportunity,
  123. and others because of their
    physical disability
  124. and a lack of any sort of
    adapted utensils or other equipment.
  125. So as I was feeding people, sort of
    the routine was the same every day.
  126. The plate would come out,
    and there would be
  127. 3 mounds of food on the plate.
  128. One mound was always brown,
    one mound was always green,
  129. and one mound was always white.
  130. You know the meat, the vegetable,
    and the starch.
  131. And, you know, I know that people like to
    eat their meal different ways.
  132. There would also be a dessert every day,
  133. jello, or ice cream, or
    something again always in a mound.
  134. And so I would spend time with each of the
  135. individuals who were having their meal
  136. and would sort of be working together,
  137. trying to figure out
    did they prefer to have
  138. to eat their dessert first?
  139. Some people liked to do that.
  140. Did they prefer
  141. a little bit of the brown and a little bit
  142. of the white all on the same fork?
  143. Did they not want their food touching?
  144. You know and I would sort of
    work back and forth
  145. with them to try and figure out what
  146. their preference was and I got in trouble
  147. because I was spending too much time
  148. and ultimately, I was moved to a different
  149. position because I was taking too much
  150. time giving people an opportunity to make
  151. some choices and express some preferences.
  152. So that was extremely pivotal and in
  153. many ways you know, those early early
  154. experiences have really totally driven
  155. who I am and what I believe
    all these years later.
  156. In terms of the
    Americans with Disabilities Act,
  157. I had a very close personal experience
  158. with what was then called
  159. "public law 94142" the Education of
  160. All Handicapped Act, later on renamed
  161. the Individuals with Disabilities Act,
  162. and I had a very personal family
  163. experience with IDEA and became aware of
  164. legislative initiatives and how the IDEA
  165. had just been passed. And then I started
  166. to become more aware of the work being
  167. done. And this was back in the 70s
  168. work being done on some other legislative
  169. initiatives, the 504, the passage of
  170. the Rehabilitation Act, followed by the
  171. 504 sit-in in San Francisco to get the
  172. regulations put in place. That really
  173. caught my attention and between the little
  174. bits of information I was getting there
  175. and the work I was doing
  176. and then becoming a full-time advocate
  177. going to work for an
    independent living center
  178. in 1982, I then became extremely involved
  179. in systems change and how to develop
  180. policy, how to organize, how to support
  181. the rights and voices and preferences of
  182. other people and because I lived in
  183. Connecticut and the original author of
  184. the Americans with Disability Act,
  185. the first time the bill was introduced was
  186. Senator Weicker of Connecticut, and
  187. Senator Weicker, father of a
    great young man
  188. who had Down Syndrome.
  189. Senator Weicker was very involved with the
  190. disability advocacy community in
  191. Connecticut, and I then had the incredible
  192. opportunity to go to Boston and testify
  193. at one of the Congress major hearings--
  194. field hearings on the Americans with
  195. Disability Act. So you know of course that
  196. first time around, the bill didn't pass
  197. but boy oh boy were we revved up
  198. and in the passage of the ADA,
    in the period in which
  199. once the bill was re-introduced and votes
  200. were organizing, I remember that we had
  201. stacks and stacks and stacks of bright
  202. pink postcards and we were organizing
  203. folks across the state to develop,
  204. to sign those postcards supporting the
  205. passage of the ADA and then you know this
  206. was sort of a wonderful but maybe a little
  207. bit misleading experience,
    we actually were
  208. successful. The bill got passed! And I
  209. remember thinking,
    "Oh, well this wasn't that hard
  210. I mean, you know,
    we had to go at it twice
  211. but well this wasn't so hard.
  212. Let's take on some more legislation!"
  213. So it turns out that it wasn't as easy
  214. as it looked to me. It wasn't just about
  215. hot pink postcards and meetings and
  216. marches. That all helped but even that
  217. sometimes these days, it doesn't seem to
  218. be enough to change policy.
  219. So that's my earliest journey to 1990.
  220. Thank you Marcie. Okay we're going to the
  221. present now. So just so you know, I do
  222. have another interview at 2:00, so we're
  223. going to have 3 more sections: the present
  224. the future, and the call to action.
  225. So just to pace yourself within those.
    --thank you
  226. OK so the present, has the ADA
  227. made a difference? Tell us about your
  228. "aha" moment that told you that the ADA is
  229. or is not making a difference and to what
  230. extent based on your passions and areas of
  231. expertise, where do you see or not see the
  232. impact of the ADA?
  233. So the ADA has had a huge
  234. and sweeping impact
  235. and it's important for me
  236. to begin as I talk
  237. about the present day as we're embarking
  238. on ADA 30 it's really important to start
  239. with how much things absolutely have
  240. changed, you know so certainly some of the
  241. architectural barrier removal efforts,
  242. some of the significant improvements
  243. in equally effective communication,
  244. some of the requirements around programs,
  245. you know, all of those have
    significantly changed
  246. most--- can't even say most
    of the time--often
  247. there have been many
    really great initiatives over
  248. the years but we've always had to maintain
  249. a relentless battle to not
  250. let anything slip, to not lose
  251. any sort of momentum
    towards accessibility.
  252. If we look away for a minute,
  253. our rights will be swept away from us.
  254. And I can certainly talk about
  255. the very present day,
  256. and what I have to say about where
  257. we are today, is not great
  258. and so I do want to take
    a little more time
  259. to call out the significant progress
  260. in so many aspects of daily life
  261. in which we can
  262. call out failures of ADA compliance,
  263. enforcement of the law,
    but it is often times
  264. in comparison to the examples of where
  265. it's working, so when transportation
  266. is not accessible, we're calling it out
  267. because we know the good and
  268. promising practices that
    have been in place
  269. for transportation accessibility
  270. make the failures so much more egregious
  271. in housing, in employment, in the kinds of
  272. assistive devices that are available,
  273. the universal design of places and things
  274. all of that points to the
    examples of where we
  275. are getting it right and in stark contrast
  276. the areas where we are
    egregiously getting it wrong.
  277. And I have to say that
    just very recently,
  278. I have led my
    organization's involvement
  279. in a petition to the US Department of
    Health and Human Services

  280. demanding that people with disabilities
  281. be immediately relocated out of
    nursing homes and other
  282. Congregate settings due to the
    horrific circumstances
  283. in those congregate settings
  284. due to covid-19 and the failure
  285. to provide appropriate protections
  286. for people with disabilities
    in institutional settings.
  287. The ADA back in 1990
  288. very clearly gave people with disabilities
  289. significant rights, and...
  290. even when challenged in 1999,
    the Olmstead case,
  291. which was a Georgia case, and two women
  292. who.. Lois and Elaine, Lois Curtiss
  293. an incredible woman I've had the
  294. pleasure of being with on a number
  295. of occasions, the two of them
  296. demanded that they had a right to live in
  297. the most integrated setting appropriate
    to their needs
  298. and the decision, the case went
  299. all the way to the Supreme Court
  300. and I was among those who
  301. slept out on the steps of the
    Supreme Court
  302. on the night before their case was heard
  303. and I was among
  304. the folks who celebrated out in front of
  305. the Supreme Court on the day that
    that decision came
  306. down in favor of Lois and Elaine's right,
  307. and the rights of thousands,
    tens of thousands,
  308. millions of people with disabilities
  309. to live in the most integrated setting
  310. appropriate to their needs.
  311. Given that we are 21 years
    after that decision,
  312. yesterday the American Civil
    Liberties Union
  313. submitted a petition,
    and the World Institute
  314. on Disability joined a number of other
  315. disability organizations in
    bringing that petition
  316. demanding that people with disabilities
  317. be immediately relocated
  318. out of these congregate settings.
  319. Tens of thousands of people have died in
  320. the last hundred days, the genocide
  321. of people with disabilities because of
  322. the failures of implementation of that
  323. Olmstead decision, and the failures of our
  324. government to provide the kind of supports
  325. and services that enable
  326. people with disabilities
  327. to live safely and with the support they
  328. need in place in the community
  329. and, very infuriatingly our continued
  330. persistent calls for
  331. people with disabilities to be
  332. adequately served in these..
  333. in disasters have been ignored,
  334. and the bottom line has been
    that again over the
  335. last hundred days tens of
    thousands of people with
  336. disabilities have died. And when I was
  337. called on, saying that those were
  338. people with disabilities, I have had
  339. conversations with a number of senior
  340. government officials who, like, why are
  341. you saying people with disabilities?
  342. and you know, these were old people with
  343. underlying conditions living
    in nursing homes
  344. and in long term care facilities.
  345. Well you don't go to a nursing home
  346. because you're old, you go to a nursing
  347. home because you have a disability and the
  348. supports and services you need to stay in
  349. the community have not been given to you.
  350. And the vast majority,
    some would say, all of
  351. those deaths in congregate facilities are
  352. people with disabilities, most of them
  353. black and brown and people living in
  354. poverty. And the failures of Americans
  355. with Disabilities Act, the Olmstead
  356. decision, and our government's
  357. will to monitor and enforce this law
  358. and the Rehabilitation Act have a
  359. devastating impact on where we are today.
  360. And the death of many of our siblings.
  361. Without any end in sight.
  362. Thank you Marcie, Ok. So next on
    to the future.
  363. With the work you've been doing,
  364. you've seen a lot of terms
    in progress and barriers.
  365. If you could pick one thing
    to change
  366. or that needs to occur to have
    access and equality
  367. --I know that's hard--
  368. one thing to have access and equality
    present in the lives of people
  369. with disabilities what would that be?
  370. The one thing that must happen:
  371. people with disabilities have
    civil rights protections by law,
  372. and the one thing that
    must happen
  373. is that their rights are monitored
  374. and enforced without exception.
  375. Following the law is not enough,
    we need universal
  376. design to be the standard, we need
  377. accessibility and accommodation
    to be readily available,
  378. but we must have
  379. monitoring and enforcement.
  380. Every federal dollar is supposed
    to be spent in
  381. compliance with the Rehabilitation Act.
  382. And between what the Rehab Act and
    the ADA require
  383. there should be, no rue for
    people with civil rights protections
  384. to be repeatedly denied
  385. and unable to fully participate
  386. in home and community life.
  387. Monitoring and enforcement
    must be the floor
  388. I have a ceiling, but enforcing
    these civil rights laws
  389. is absolutely the floor.
  390. Thank you. So what can we do?
  391. What steps can we as community members
    take right now?
  392. So what we can do right now is,
    you know,
  393. one of my favorite sayings,
    "never give up, never give in."
  394. Another of my favorites,
    "nothing about us without us."
  395. We as disability community leaders
    need to stick together,
  396. we need to center our work
    around people
  397. who are multiply marginalized, excluded.
  398. We need to be sure that we are not wasting
  399. our time with infighting, and with
  400. a kind of divisive childish behavior that
  401. some folks are still stuck on engaging in,
  402. we absolutely must reach a hand forward,
  403. reach a hand back, stick together
  404. and continue relentlessly
  405. to work towards the realization
    of the goal
  406. that the ADA was written around and so
  407. many of our siblings have fought so very
  408. hard for. We've lost a bunch of those
  409. hardworking visionary leaders;
    many of them
  410. have been lost in recent years,
    some of them
  411. have been lost along the way, we have an
  412. incredible legacy to care for, we have
  413. huge opportunities to work towards,
  414. technology has the potential for leveling
  415. the playing field if in fact people have
  416. real access and the World Institute on
  417. Disability and our commitment to
  418. work in partnership with other
  419. disability lead organizations and
  420. our allies to make communities
  421. stronger, more resilient for the whole
  422. community because when we get it right
  423. for people with disabilities, I think
  424. the whole community not only benefits
  425. but is stronger for our leadership,
  426. our contributions, our expertise in
  427. what it takes to make daily life
    work for everybody.
  428. Excellent, thank you.