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Ukazujem Revíziu 24 vytvorenú 12/09/2020 od briellesummerhays.

  1. Hi, my name is Joseph Scamardo and I am
    an assistant professor of philosophy
  2. and associate Director of the
    Institute in Public Affairs
  3. at San Diego State University
  4. I specialized in philosophy of disability
    and bioethics.

  5. I also identify as disabled.
  6. I have a spinal cord injury,
  7. as well as a rare kind of dwarfism, and so
  8. you get two for the price of one with me.
  9. So, my first memory of discrimination was,
  10. well, it's hard to say...
  11. I have lots of memories as far as
  12. the experience of stigma or bigotry,
  13. mostly around my dwarfism,
  14. and so, you know,
  15. I have lots of early memories around that
  16. with children staring and laughing
  17. and that sort of thing from a
    very young age.
  18. Then as far as, sort of
  19. a more systematic discrimination
  20. that sort of excluded me from something
  21. that I wanted to do.
  22. I had a pretty good experience as a child,
  23. mostly because my parents really did a lot
  24. to make sure that I was included.
  25. I can remember being in boy scouts
  26. and cub scouts when I was a kid
  27. and my father, really doing a lot with me
  28. to ensure that the inclusion
    of my disability--
  29. You know going on camping trips with me
  30. and sort of acting as a personal attendant
  31. kind of thing to make sure that I was able
  32. to go and participate,
  33. and that sort of thing.
  34. And so the first real experience
  35. of exclusion that I can remember
  36. happened when it was time
  37. to go to high school.
  38. I had gone to the public schools
  39. in my town up until through the 8th grade
  40. and then when it came to high school,
  41. I was supposed to go to the same
  42. private religiously sort of oriented
  43. school that my older siblings went to
  44. and I took the entrance exam and even got
  45. a small scholarship to go and everything,
  46. but it didn't have an elevator,
  47. and so I used a motorized scooter
  48. to get around, and it was
  49. going to be impossible for me to
  50. attend that school, because there was no
  51. elevator. Now this was actually
  52. after the passage of the ADA,
  53. but because it was
  54. a religiously oriented school,
  55. it was exempt from the requirements
  56. of the ADA.
  57. And so, I didn't have any leverage with
  58. that law.
  59. To be able to get them
  60. to make accommodations for me and so
  61. I ended up going to the public school
    in my town
  62. which actually, personally, I was pretty
    happy about anyway,

  63. because that's where all my
    friends were going.
  64. But it still sort of clued me in
  65. to the fact that...
  66. not everything is accessible,
  67. not everything is designed for me and that
  68. this was going to be something
  69. I was gonna have to figure out
  70. throughout my life.
  71. As far as remembering the ADA
  72. and sort of its passage
  73. and that sort of thing,
  74. I was pretty young when it was passed,
  75. I'm sometimes referred to as part of the
  76. ADA generation, which means that
  77. I sort of grew up with the ADA mostly,
  78. I was born in 1982,
  79. and so I was 8 or 9 years old when the ADA
  80. passed, and so I don't really have
  81. any kind of recollection of, "Aha!"
  82. That's the moment that it passed.
  83. And the recall of where I was at the time
  84. or anything like this,
  85. but I do remember my father explaining
  86. it to me, around the time of my
  87. start of high school.
  88. When I experienced this with that
  89. private catholic school, and you know
  90. having that sort of systematic
  91. discrimination experience and he explained
  92. that public schools, and other kinds of
  93. public places were accessible to me
  94. because of the ADA and that there was
  95. this law that said that things had to be

  96. accessible to people
  97. who use wheelchairs, and
  98. motorized scooters like I did at the time.
  99. And so, that was my first sort of
  100. awareness of the ADA, as well as my first
  101. awareness of discrimination, which is
  102. kind of cool. I think?
  103. Because it was neat to have
  104. that experience of, "Okay, well,
  105. this is something that's
    going to be a challenge for you,
  106. and here's how you're protected,
    and here's how you can do something
  107. about it."
    And so in a way, it was this sort of,
  108. my awakening into advocacy as well.
  109. Now, as far as the difference that the
    ADA has made in my life,
  110. or the life of others,
    I think that it's been, of course
  111. an incredibly important law that has
    opened up all sorts of opportunities
  112. to people, everything from public
    transportation, to be able to move around
  113. your community, the homestead decision
    is based on ADA, which says that people
  114. need to be--when they need any kind of
    long time care,
  115. they need to be served in the least
    restrictive environment, meaning that
  116. you can't just institutionalize or
    warehouse somebody because it's more
  117. convenient for you, you need to make sure
    that they're able to live in the community
  118. or somewhere that is going to be best
    for them.
  119. What else did the ADA do? Just
    the ability to you know, get an education,
  120. the ability to get a job, all of these
    things, for me and for others,
  121. were sort of caused by the ADA and I can't
    really imagine what it was like
  122. prior to the ADA, honestly.
  123. I mean, I can imagine it I guess, but
    I'm sure glad that I didn't have to
  124. experience it.
  125. The ADA makes a difference in a wide range
    of personal experiences
  126. and also a wide range of sort of
    disability politics issues. Right?
  127. So, my personal experience that I think
    most recently has been impacted by the ADA
  128. has been just my ability to live an
    independent life with my two kids.
  129. I think prior to the ADA, it would've
    been much harder to do that.
  130. You know raising kids means that I have to
    go into lots of different public spaces
  131. and do different things that I might not
    have been 'required' to do, if you will,
  132. professionally, or just sort of
    in everyday life, if I didn't have them.
  133. So going to the zoo, or going to the
    grocery store, for that last minute item
  134. or you know, just whatever it might be,
    I think that, you know--
  135. opening up the daycare centers, and so on
    and so forth.
  136. The ADA sort of opened all of that up to
    me, as a wheelchair user
  137. and so, that's where it's made a big
    personal impact in my life recently.
  138. Now, I think that the one thing that
    I can sort of speak to, professionally,
  139. about the ADA and its impact or
    lack of impact is probably, two-fold:
  140. One, is the ways in which my privilege
    as a physically disabled--
  141. there's a disability hierarchy of course,
    and so physical disability
  142. is usually at the top of that hierarchy,
    with psychiatric disabilities
  143. and intellectual developmental
    disabilities,
  144. are sort of lower down on the hierarchy.
  145. And so, as a physically disabled,
    cisgender, heterosexual white guy,
  146. I've benefited a lot more from the ADA
    than lots of other people
  147. that don't have those kinds of privileges.
  148. I think for instance about how the ADA
    is designed, really
  149. to promote what you'd think of
    as equality of opportunity,
  150. meaning that everybody has an equal
    opportunity to compete within sort of the
  151. economic life of the United States, and
    so, it allows you to enter into the
  152. workforce and enter into the educational
    system and so on and so forth
  153. then compete.
  154. But what it doesn't do is it doesn't
    address any of the other advantages
  155. or disadvantages that intersect with
    ableism. So that's sort of something
  156. that is I think, a real problem, with
    the ADA.
  157. I'm a well-educated person, I have a
    master's degree and a Ph.D.
  158. and that, I don't think would've been
    available to me as easily as it was
  159. if I didn't have these other privileges
    that I do have,
  160. that the ADA doesn't do anything
    to address, it just sort of treats
  161. all disabled people as if they were
    the same, and as if the only thing
  162. they have to deal with is structural
    ableism, and that's just not true, right?
  163. I think another thing about disability
    that the ADA doesn't address
  164. is economics, in that, I think that
    despite the ability to compete,
  165. a lot of disabled people still live in
    extreme poverty, because of other
  166. things that make it impossible for them
    to compete,
  167. other than just their disability.
  168. And so, the real sad part to me about that
    is you look at other systems
  169. that are designed to help disabled people
    get out of poverty,
  170. and even they don't recognize the way that
    privilege operates in these contexts.
  171. So, for instance,
    the vocational rehab system.
  172. I've benefited greatly from the vocational
    rehab system so I don't want to just
  173. sit here and talk smack on it, right?
  174. The vocational rehab system has helped me
    get a van that I could drive,
  175. so I could get back and forth from
  176. my place of employment, from school,
    which was huge, right?
  177. But the only reason why I had access
    to that van was:
  178. A. Because I could afford the van itself,
    which not a lot of disabled people can do,
  179. especially if they aren't
    working yet and
  180. B. Because the VOC rehab counselor
    thought
  181. that I was worth the investment right?
  182. Someone who didn't have the advantages
    that I had, as far as the kind of
  183. disability that I have, my family's
    resources and my skin color and gender and
  184. all those things, it's very likely that
    rehab counselor would've said,
  185. "You cant take the bus," right?
  186. "We're not going to invest all of
    this money into helping
  187. you learn how to drive."
  188. Because they wouldn't have believed that
    they would get this return on their
  189. investment that the person would be able
    to get a well paying job,
  190. and so on and so forth,
    and so, I think that that's also
  191. a big issue that the ADA doesn't address,
    is this kind of intersectionality
  192. that gives some disabled people
    advantages within even the system
  193. that is designed to help them, and other
    people, of course, disadvantages, which is
  194. a real issue.
  195. Now, as far as my area of expertise,
    Bioethics, there's definitely been some
  196. ways in which the ADA has helped greatly,
    and other ways
  197. in which it hasn't really done much.
  198. So I'll start with the positivity, right?
    We'll start with the good news.
  199. One way in which I think, I can

  200. point to in a very concrete way in which
  201. the ADA has helped is

  202. when it comes to healthcare rationing so,
  203. The issue of healthcare in the United
    States of course is a very hot button
  204. topic and it's hot because there is sort
    of perceived lack of resources--
  205. There's more need
  206. than there is supply for healthcare.
  207. And so, when we talk about expanding
    healthcare to a larger number of people,
  208. without also expanding the resources that
    are being devoted to healthcare,
  209. then that's gonna be a real problem,
    because some people aren't going to get
  210. as much as they need, right?
  211. You're going to have to sort of budget it,
    if you will.
  212. Or in the terms of bioethics,
    ration healthcare.
  213. Now this proved to be an issue because
  214. when it was done on smaller scale,
    for instance the state of Oregon,
  215. after the passage of the ADA--
    I'm not sure exactly on the timeline,
  216. I'm not a historian--but the state of
    Oregon expanded their publicly provided
  217. healthcare to a larger number of people,
    and as they did that, they needed to
  218. make sure that they had a way of
    prioritizing what was covered
  219. and what was not covered.
  220. And so, as they did this,
  221. it became apparent that a lot of
    disabled people
  222. were being rationed out of
    the healthcare system.
  223. That a lot of things were not being
    covered for disabled folks
  224. that should be.
  225. And so, there was a series of lawsuits
    that were brought against
  226. the state of Oregon, that basically
    said that, "You couldn't discriminate
  227. against disabled people and not
    provide them with healthcare,
  228. based on their disability."
  229. That you couldn't sort of say,
  230. "Well, this person isn't going to get
    very much bang for their buck,
  231. they're not gonna end up being healthy
    anyway, 'cause they're still going
  232. to be disabled, so we're not going to give
    them this treatment option."
  233. Right? And so that was a big win
    within bioethics
  234. that was a direct result of the ADA.
  235. More recently,
    we've had a similar thing pop up
  236. because of the COVID-19 pandemic.
  237. Specifically, there are what are called
    "Emergency Healthcare Protocols"
  238. that are being developed for hospital
    systems and states that anticipate
  239. needing more intensive care unit beds,
    ventilators and so on and so forth,
  240. that aren't actually available.
  241. And so we need some way of figuring out
    who gets the ventilator,
  242. who gets the Intensive Care Unit bed,
  243. and so on and so forth,
    as the pandemic increases and goes on.
  244. And so there was some
    protocols that were developed
  245. that were very discriminatory
    against disabled people.
  246. There was one in Alabama specifically,
    that said that anybody
  247. with an intellectual disability
    or with dementia was going to be
  248. deprioritized from getting these life-
    saving resources if they got COVID-19.
  249. And there was one in Washington state,
    that was pretty discriminatory against
  250. disabled folks and said that
    if you had a disability
  251. that meant that even after treatment
    you are still going to be disabled,
  252. that you would be deprioritized from
    getting the life-saving, life support
  253. treatment for COVID-19.
  254. So there was a variety of these all over
    the United States
  255. that were really problematic and
    that explicitly were discriminating
  256. against disabled people when it came to
    getting treatment for COVID
  257. and so in response, there were some folks
    from protection and advocacy agencies,
  258. which are sort of these--
    Disability Rights California is one,
  259. and each state has protection and advocacy
    agencies that are federally funded,
  260. non-profit law firms that protect the
    rights of disabled people and so they
  261. sued these states and these hospital
    systems and got the federal government to
  262. provide guidelines for treatment ration
    protocols that basically say
  263. that you can't discriminate against
    disabled people in this way.
  264. That the only time that you can withhold
    treatment for COVID-19 is if there is
  265. sort of a very clear way in which the
    disability means that person would not
  266. benefit from the treatment, that, you know
    they have the kind of disability
  267. that would make it very, very unlikely
    that they would survive the virus
  268. even with some kind of ventilator or
    intensive care situation.
  269. And so, that's of course very different
    because something like needing
  270. an assistive device like a wheelchair or
    needing help dressing and bathing
  271. or having these things that would've
    meant that people would be rationed out
  272. under some of these protocols have
    nothing to do with whether or not
  273. So of course this is a really good thing
    that these protocols were changed because
  274. there were a lot of them that would have
    rationed people out
  275. for reasons that had nothing to do with
    whether or not they'll survive
  276. the virus with treatment, Right?
  277. So whether you use a wheelchair,
    or need a personal attendant for things
  278. like dressing and bathing, whether or not
  279. you have an intellectual disability
  280. These are reasons that were being used to
    deny people treatment for COVID-19 that
  281. have nothing to do with whether or not
    they would survive the disease. So,
  282. These advocacy efforts that were based on
    the American with Disabilities Act
  283. sort of made that illegal to do, which
    is of course a really important thing it's
  284. literally saved peoples lives presumably.
  285. So thats the good news as far as my field
    of work and the ways in which ADA has
  286. made an impact, but of course that isn't
    the only story.
  287. There are lots of ways in which
  288. bioethics can and has been discriminatory
    towards disabled people in ways that isn't
  289. addressed by the ADA and that can't really
    be addressed by the ADA because of the way
  290. it's written and the kinds of problems
    it was designed to solve.
  291. For instance, there is a lot of
    controversy over the development of
  292. different reproductive technologies
  293. that are designed to
    prevent the birth of disabled children.
  294. With intellectual disabilities,
    with down syndrome,
  295. with disabilities like mine, dwarfism.
  296. with disabilities like certain kinds of
    genetically linked deafness, and so on.
  297. And so we have an entire industry aimed
  298. at genetic testing for these kind of
  299. disabilities and the prevention of the
  300. birth of children
  301. with these disabilities with
  302. selective abortion or, now,
    selective implantation,
  303. which is when you test embryos
  304. and then pick the one that you want
  305. to give birth to.
  306. And then coming down the pipeline
  307. is CRISPR, which will be a technology
  308. that doesn't select a particular embryo
  309. but rather modifies the embryo itself.
  310. It sort of-- what's sometimes referred to
  311. as gene editing or genetic engineering.
  312. And that isn't a reality yet, but
  313. scientists are certainly working toward
  314. the use of that technology to prevent
  315. disability.
  316. Now it's something that of course makes
  317. a lot of people with these disabilities
  318. very uncomfortable because of
  319. the message that it might send, right?
  320. It might send the message that,
  321. "People like you aren't wanted
  322. in the world." Right? "we don't
  323. need more like you."
  324. And so, it is sorta of based on, largely,
  325. stigma around disability, around ideas
  326. about quality of life with disabled people
  327. that, "if you have a disability, you must
  328. be miserable, and so we must do everything
  329. we can to prevent more like you from
  330. coming into existence," and so on and so
  331. forth.
  332. Now, this is a real problem because,
  333. of course, it comes into conflict with
  334. values a lot of people hold around
  335. reproductive liberty, around women being
  336. able to make choices for themselves
  337. about their own bodies, and about their
  338. own lives, and so on and so forth.
  339. And so, this has created a tension between
  340. disability bioethics and other kinds of
  341. progressive groups that are wanting to
  342. promote freedom and justice for everybody.
  343. And so the ADA, you know, isn't designed
  344. to handle something like this because
  345. it's not about overt discrimination
  346. against people, but rather it's about
  347. attitudes about beliefs, about disability,
  348. that drive personal decisions.
  349. And so it's really really hard to address
  350. this as a policy problem because you know
  351. people aren't going to be very keen on
  352. restricting the kind of decisions women
  353. and families can make about reproduction.
  354. But at the same time, we want to promote
  355. good beliefs, and true beliefs, and good
  356. attitudes about disability, and the ways
  357. in which it contributes to the world,
  358. in the ways in which disabilities form
  359. a diversity that's important that we
  360. don't want to eliminate.
  361. And so that's, I think, a task for folks
  362. like myself in bioethics that are writing
  363. about these issues, that are trying to
  364. make arguments that are able to walk this
  365. very thin line between saying,
  366. "Okay, you know disability is the kind of
  367. thing that is not a horrible life sentence
  368. of misery," and so we don't want to make
  369. that assumption and we don't want to base
  370. the technologies that we develop or the
  371. decisions that we make on that assumption.
  372. But at the same time, we don't want to
  373. tell people what they can and can't do
  374. with their bodies.
  375. I think that, if I were to pick one thing
  376. to change, to try to give people with
  377. disabilities more access, and to remove
  378. barriers to a life of flourishing
  379. and opportunity for disabled people.
  380. I think I would go back to my birth story,
  381. my origin story if you will.
  382. When I was born, the doctor that delivered
  383. me looked at my body and he had never
  384. seen somebody with my kind of Dwarfism
  385. before, and didn't know much about it,
  386. and he told my parents,
  387. "he's not gonna do much,
    he's not going to be
  388. able to walk, he's not gonna be able
  389. to talk, he's not gonna be able to go to
  390. school," and so on and so forth.
  391. "You should place him in a
  392. state institution and
  393. go about your lives, forget about him."
  394. And they didn't do that, obviously.
  395. They chose not to do that.
  396. They took me home, they raised me
  397. like their kid because I was their kid.
  398. And so I think a lot about how different
  399. my life would be if I had been
  400. institutionalized from birth, as that
  401. doctor recommended.
  402. And then I think about how these
  403. institutions still exist.
  404. That when I was-- before I entered
  405. academia full-time, I worked as an
  406. advocate for a protection and advocacy
  407. agency in the state of Texas, where they
  408. have what are called,
  409. "state supported living centers,"
  410. which are-- sort of a euphemism for
  411. state institutions where they warehouse
  412. people with intellectual disabilities and
  413. psychiatric disabilities of various kinds.
  414. Basically the kind of place that the
  415. doctor was recommending my parents
  416. to put me. They still exist, almost forty
  417. years later. This is not okay.
  418. And it's not just these kind of places
  419. that are really problematic.
  420. Nursing homes, there's lots of disabled
  421. people in nursing homes.
  422. Even some group home systems
  423. that are corporate, that are designed to
  424. make money, and not to make sure that
  425. the people living there are actually
    living
  426. good lives, right?
  427. This is a serious problem when you
  428. take people and you put them in
  429. a situation where they don't have control
  430. over the basic decisions of their life:
  431. what they eat for their meals, when they
  432. wake up, when they go to bed,
  433. how they spend their time, what they wear.
  434. When I was working as an advocate going
  435. in to the state institutions in Texas,
  436. I remember sitting in a meeting where it
  437. was discussed about my clients eating
  438. habits. How apart of his behavioral
  439. support plan was that they had his helper
  440. try to get him to take a sip of water
  441. between every bite of food that he took
  442. during meal time. I thought to myself,
  443. "how absurd!" This is a grown adult
  444. person that they are trying to micromanage
  445. down to the very last detail of his life
  446. and trying to control everything about
  447. what he does. That's horrific I can't
  448. imagine living under that kind of
  449. condition. Where not even being able to
  450. eat my meals in peace without someone
  451. telling me what to do and how to do it.
  452. Right? And so you know I think that this
  453. lack of control over basic decisions of
  454. your life is a real problem for a large
  455. number of disabled people still even you
  456. know 30 years after the passage of the
  457. ADA. So if there is one thing that I
  458. could sort of wave a magic wand and change
  459. it would be that. It would be developing
  460. systems where people are truly supported
  461. to be able to flourish as they are, but
  462. not controlled. Right? Not told what to
  463. do and when to do it every moment of their
  464. lives. Where they can make their own
  465. decisions and have agency over their own
  466. lives. I think that's what is
    missing for a
  467. large number of disabled people still even
  468. after the ADA. And that we need to do
  469. something about that. I think that there
  470. is a few things that we can do.
  471. First, educate your self on the issues.
  472. Right? Educate your self on the issues
  473. beyond just how they effect you. Right?
  474. I think that within the disability
  475. movements there is sort of pockets of
  476. different people doing different things.
  477. And that's fine. But, I think we need to
  478. talk to each other more. We need to
  479. realize that disability issues go beyond
  480. our limited experience. Right? So we need
  481. to be aware of the ways in which
  482. disability disadvantages people
  483. differently. That the experience of
  484. disability is not an experience it's many
  485. experiences. And so, we need to listen to
  486. each other and hear from each other about
  487. the ways in which we are suffering and
  488. hurting. Because, of disability
  489. discrimination because it looks very
  490. different between different people. And so
  491. having a richer fuller understanding
  492. of the problem I think is the first step.
  493. Then beyond that sort of talking to people
  494. about strategies that they have
    and learn from
  495. each other about you know maybe some
  496. strategy that works for you know the deaf
  497. community would work really well for the
  498. dwarf community and maybe we
    haven't talked
  499. to each other very well about different
  500. political strategies to try to get what
  501. we need in order to live well. And maybe
  502. we should. Right? So, educate ourselves
  503. about the struggle of others you know
  504. because it's important to know and then
  505. share information and share strategies on
  506. how to effectively advocate and come
  507. together and fight together. Right? If you
  508. show up for someone on issue A that they
  509. are having then they're
    more likely to show
  510. up for you on issue B that your having.
  511. And, so building solidary across the
  512. movement more effectively. Recognizing
  513. the ways in which other oppressions
  514. intersect with disability and change the
  515. nature of disability oppression. These
  516. would be my recommendations of what to do.
  517. Just basically raising your awareness
  518. of discrimination beyond just your own
  519. experience.