1 00:00:00,000 --> 00:00:05,276 Hi, my name is Joseph Scamardo and I am an assistant professor of philosophy 2 00:00:05,276 --> 00:00:09,241 and associate Director of the Institute in Public Affairs 3 00:00:09,241 --> 00:00:11,449 at San Diego State University 4 00:00:11,449 --> 00:00:16,328 I specialized in philosophy of disability and bioethics. 5 00:00:16,581 --> 00:00:19,151 I also identify as disabled. 6 00:00:19,151 --> 00:00:22,259 I have a spinal cord injury, 7 00:00:22,259 --> 00:00:25,424 as well as a rare kind of dwarfism, and so 8 00:00:25,424 --> 00:00:28,567 you get two for the price of one with me. 9 00:00:28,809 --> 00:00:35,887 So, my first memory of discrimination was, 10 00:00:36,589 --> 00:00:40,589 well, it's hard to say... 11 00:00:43,296 --> 00:00:47,116 I have lots of memories as far as 12 00:00:47,116 --> 00:00:51,773 the experience of stigma or bigotry, 13 00:00:51,773 --> 00:00:54,819 mostly around my dwarfism, 14 00:00:54,819 --> 00:00:56,410 and so, you know, 15 00:00:56,410 --> 00:01:00,248 I have lots of early memories around that 16 00:01:00,248 --> 00:01:03,533 with children staring and laughing 17 00:01:03,533 --> 00:01:07,765 and that sort of thing from a very young age. 18 00:01:10,104 --> 00:01:13,498 Then as far as, sort of 19 00:01:13,498 --> 00:01:15,493 a more systematic discrimination 20 00:01:15,493 --> 00:01:17,430 that sort of excluded me from something 21 00:01:17,430 --> 00:01:22,343 that I wanted to do. 22 00:01:22,343 --> 00:01:25,849 I had a pretty good experience as a child, 23 00:01:25,849 --> 00:01:31,055 mostly because my parents really did a lot 24 00:01:31,055 --> 00:01:33,940 to make sure that I was included. 25 00:01:33,940 --> 00:01:37,254 I can remember being in boy scouts 26 00:01:37,254 --> 00:01:39,157 and cub scouts when I was a kid 27 00:01:39,157 --> 00:01:42,611 and my father, really doing a lot with me 28 00:01:42,611 --> 00:01:47,682 to ensure that the inclusion of my disability-- 29 00:01:48,509 --> 00:01:50,699 You know going on camping trips with me 30 00:01:50,699 --> 00:01:53,489 and sort of acting as a personal attendant 31 00:01:53,489 --> 00:01:56,501 kind of thing to make sure that I was able 32 00:01:56,501 --> 00:01:57,732 to go and participate, 33 00:01:57,732 --> 00:02:00,315 and that sort of thing. 34 00:02:00,551 --> 00:02:03,971 And so the first real experience 35 00:02:03,971 --> 00:02:06,023 of exclusion that I can remember 36 00:02:06,023 --> 00:02:07,799 happened when it was time 37 00:02:07,799 --> 00:02:09,349 to go to high school. 38 00:02:09,349 --> 00:02:10,988 I had gone to the public schools 39 00:02:10,988 --> 00:02:13,812 in my town up until through the 8th grade 40 00:02:13,812 --> 00:02:17,228 and then when it came to high school, 41 00:02:17,228 --> 00:02:21,228 I was supposed to go to the same 42 00:02:21,228 --> 00:02:25,131 private religiously sort of oriented 43 00:02:25,131 --> 00:02:27,837 school that my older siblings went to 44 00:02:27,837 --> 00:02:30,300 and I took the entrance exam and even got 45 00:02:30,300 --> 00:02:33,170 a small scholarship to go and everything, 46 00:02:33,170 --> 00:02:36,150 but it didn't have an elevator, 47 00:02:36,150 --> 00:02:39,847 and so I used a motorized scooter 48 00:02:39,847 --> 00:02:42,610 to get around, and it was 49 00:02:42,610 --> 00:02:44,260 going to be impossible for me to 50 00:02:44,260 --> 00:02:47,780 attend that school, because there was no 51 00:02:47,780 --> 00:02:49,810 elevator. Now this was actually 52 00:02:49,810 --> 00:02:51,960 after the passage of the ADA, 53 00:02:52,668 --> 00:02:55,448 but because it was 54 00:02:55,448 --> 00:02:58,288 a religiously oriented school, 55 00:02:58,288 --> 00:03:00,058 it was exempt from the requirements 56 00:03:00,058 --> 00:03:01,288 of the ADA. 57 00:03:01,288 --> 00:03:05,248 And so, I didn't have any leverage with 58 00:03:05,248 --> 00:03:06,696 that law. 59 00:03:06,696 --> 00:03:09,746 To be able to get them 60 00:03:09,746 --> 00:03:11,673 to make accommodations for me and so 61 00:03:11,673 --> 00:03:14,548 I ended up going to the public school in my town 62 00:03:14,548 --> 00:03:17,473 which actually, personally, I was pretty happy about anyway, 63 00:03:17,473 --> 00:03:19,713 because that's where all my friends were going. 64 00:03:20,049 --> 00:03:24,049 But it still sort of clued me in 65 00:03:24,421 --> 00:03:26,931 to the fact that... 66 00:03:27,013 --> 00:03:29,353 not everything is accessible, 67 00:03:29,573 --> 00:03:32,723 not everything is designed for me and that 68 00:03:32,723 --> 00:03:34,259 this was going to be something 69 00:03:34,259 --> 00:03:35,869 I was gonna have to figure out 70 00:03:35,869 --> 00:03:37,164 throughout my life. 71 00:03:38,242 --> 00:03:43,732 As far as remembering the ADA 72 00:03:43,732 --> 00:03:44,882 and sort of its passage 73 00:03:44,882 --> 00:03:45,992 and that sort of thing, 74 00:03:45,992 --> 00:03:48,466 I was pretty young when it was passed, 75 00:03:48,472 --> 00:03:51,249 I'm sometimes referred to as part of the 76 00:03:51,249 --> 00:03:53,213 ADA generation, which means that 77 00:03:54,723 --> 00:03:57,500 I sort of grew up with the ADA mostly, 78 00:03:58,478 --> 00:03:59,830 I was born in 1982, 79 00:04:00,381 --> 00:04:02,991 and so I was 8 or 9 years old when the ADA 80 00:04:02,996 --> 00:04:06,499 passed, and so I don't really have 81 00:04:06,499 --> 00:04:08,506 any kind of recollection of, "Aha!" 82 00:04:08,914 --> 00:04:12,487 That's the moment that it passed. 83 00:04:12,505 --> 00:04:16,171 And the recall of where I was at the time 84 00:04:16,171 --> 00:04:17,226 or anything like this, 85 00:04:17,721 --> 00:04:19,744 but I do remember my father explaining 86 00:04:19,744 --> 00:04:23,842 it to me, around the time of my 87 00:04:24,461 --> 00:04:25,686 start of high school. 88 00:04:26,666 --> 00:04:28,276 When I experienced this with that 89 00:04:28,276 --> 00:04:32,107 private catholic school, and you know 90 00:04:32,471 --> 00:04:34,044 having that sort of systematic 91 00:04:34,798 --> 00:04:39,298 discrimination experience and he explained 92 00:04:39,348 --> 00:04:43,951 that public schools, and other kinds of 93 00:04:43,951 --> 00:04:48,855 public places were accessible to me 94 00:04:48,855 --> 00:04:51,697 because of the ADA and that there was 95 00:04:51,697 --> 00:04:53,924 this law that said that things had to be 96 00:04:54,596 --> 00:04:56,214 accessible to people 97 00:04:56,214 --> 00:04:57,357 who use wheelchairs, and 98 00:04:57,357 --> 00:05:00,215 motorized scooters like I did at the time. 99 00:05:00,215 --> 00:05:01,956 And so, that was my first sort of 100 00:05:01,956 --> 00:05:04,654 awareness of the ADA, as well as my first 101 00:05:04,654 --> 00:05:07,040 awareness of discrimination, which is 102 00:05:07,790 --> 00:05:08,870 kind of cool. I think? 103 00:05:08,870 --> 00:05:11,536 Because it was neat to have 104 00:05:11,536 --> 00:05:13,573 that experience of, "Okay, well, 105 00:05:13,573 --> 00:05:16,554 this is something that's going to be a challenge for you, 106 00:05:16,913 --> 00:05:20,130 and here's how you're protected, and here's how you can do something 107 00:05:20,130 --> 00:05:23,441 about it." And so in a way, it was this sort of, 108 00:05:24,129 --> 00:05:26,144 my awakening into advocacy as well. 109 00:05:30,477 --> 00:05:35,076 Now, as far as the difference that the ADA has made in my life, 110 00:05:36,124 --> 00:05:45,319 or the life of others, I think that it's been, of course 111 00:05:45,579 --> 00:05:52,065 an incredibly important law that has opened up all sorts of opportunities 112 00:05:52,209 --> 00:05:58,279 to people, everything from public transportation, to be able to move around 113 00:05:58,279 --> 00:06:06,519 your community, the homestead decision is based on ADA, which says that people 114 00:06:06,519 --> 00:06:10,436 need to be--when they need any kind of long time care, 115 00:06:10,436 --> 00:06:14,090 they need to be served in the least restrictive environment, meaning that 116 00:06:14,090 --> 00:06:18,504 you can't just institutionalize or warehouse somebody because it's more 117 00:06:18,504 --> 00:06:24,317 convenient for you, you need to make sure that they're able to live in the community 118 00:06:24,317 --> 00:06:28,519 or somewhere that is going to be best for them. 119 00:06:31,580 --> 00:06:39,140 What else did the ADA do? Just the ability to you know, get an education, 120 00:06:39,462 --> 00:06:45,175 the ability to get a job, all of these things, for me and for others, 121 00:06:46,051 --> 00:06:51,439 were sort of caused by the ADA and I can't really imagine what it was like 122 00:06:52,500 --> 00:06:54,367 prior to the ADA, honestly. 123 00:06:54,367 --> 00:06:58,637 I mean, I can imagine it I guess, but I'm sure glad that I didn't have to 124 00:06:58,637 --> 00:06:59,508 experience it. 125 00:07:00,179 --> 00:07:07,989 The ADA makes a difference in a wide range of personal experiences 126 00:07:08,049 --> 00:07:14,756 and also a wide range of sort of disability politics issues. Right? 127 00:07:15,502 --> 00:07:27,048 So, my personal experience that I think most recently has been impacted by the ADA 128 00:07:28,187 --> 00:07:38,086 has been just my ability to live an independent life with my two kids. 129 00:07:38,919 --> 00:07:44,430 I think prior to the ADA, it would've been much harder to do that. 130 00:07:45,115 --> 00:07:51,838 You know raising kids means that I have to go into lots of different public spaces 131 00:07:52,097 --> 00:07:58,354 and do different things that I might not have been 'required' to do, if you will, 132 00:07:59,064 --> 00:08:02,495 professionally, or just sort of in everyday life, if I didn't have them. 133 00:08:02,495 --> 00:08:07,517 So going to the zoo, or going to the grocery store, for that last minute item 134 00:08:07,517 --> 00:08:16,315 or you know, just whatever it might be, I think that, you know-- 135 00:08:16,733 --> 00:08:20,122 opening up the daycare centers, and so on and so forth. 136 00:08:20,122 --> 00:08:24,122 The ADA sort of opened all of that up to me, as a wheelchair user 137 00:08:24,139 --> 00:08:31,470 and so, that's where it's made a big personal impact in my life recently. 138 00:08:33,410 --> 00:08:39,971 Now, I think that the one thing that I can sort of speak to, professionally, 139 00:08:39,971 --> 00:08:49,711 about the ADA and its impact or lack of impact is probably, two-fold: 140 00:08:49,711 --> 00:09:00,417 One, is the ways in which my privilege as a physically disabled-- 141 00:09:01,159 --> 00:09:04,394 there's a disability hierarchy of course, and so physical disability 142 00:09:04,394 --> 00:09:10,715 is usually at the top of that hierarchy, with psychiatric disabilities 143 00:09:10,715 --> 00:09:13,104 and intellectual developmental disabilities, 144 00:09:13,104 --> 00:09:15,064 are sort of lower down on the hierarchy. 145 00:09:15,609 --> 00:09:22,426 And so, as a physically disabled, cisgender, heterosexual white guy, 146 00:09:22,988 --> 00:09:27,834 I've benefited a lot more from the ADA than lots of other people 147 00:09:29,357 --> 00:09:32,226 that don't have those kinds of privileges. 148 00:09:33,417 --> 00:09:40,235 I think for instance about how the ADA is designed, really 149 00:09:40,254 --> 00:09:43,815 to promote what you'd think of as equality of opportunity, 150 00:09:45,118 --> 00:09:50,651 meaning that everybody has an equal opportunity to compete within sort of the 151 00:09:51,065 --> 00:10:01,731 economic life of the United States, and so, it allows you to enter into the 152 00:10:01,731 --> 00:10:05,245 workforce and enter into the educational system and so on and so forth 153 00:10:05,245 --> 00:10:06,350 then compete. 154 00:10:06,350 --> 00:10:12,380 But what it doesn't do is it doesn't address any of the other advantages 155 00:10:12,380 --> 00:10:21,119 or disadvantages that intersect with ableism. So that's sort of something 156 00:10:21,119 --> 00:10:25,119 that is I think, a real problem, with the ADA. 157 00:10:25,918 --> 00:10:29,918 I'm a well-educated person, I have a master's degree and a Ph.D. 158 00:10:31,757 --> 00:10:38,874 and that, I don't think would've been available to me as easily as it was 159 00:10:39,621 --> 00:10:43,621 if I didn't have these other privileges that I do have, 160 00:10:44,339 --> 00:10:48,119 that the ADA doesn't do anything to address, it just sort of treats 161 00:10:48,248 --> 00:10:52,700 all disabled people as if they were the same, and as if the only thing 162 00:10:52,700 --> 00:10:56,700 they have to deal with is structural ableism, and that's just not true, right? 163 00:10:58,333 --> 00:11:06,704 I think another thing about disability that the ADA doesn't address 164 00:11:08,118 --> 00:11:19,088 is economics, in that, I think that despite the ability to compete, 165 00:11:20,286 --> 00:11:27,310 a lot of disabled people still live in extreme poverty, because of other 166 00:11:27,310 --> 00:11:30,750 things that make it impossible for them to compete, 167 00:11:30,750 --> 00:11:32,670 other than just their disability. 168 00:11:34,544 --> 00:11:43,089 And so, the real sad part to me about that is you look at other systems 169 00:11:43,089 --> 00:11:47,089 that are designed to help disabled people get out of poverty, 170 00:11:47,089 --> 00:11:56,392 and even they don't recognize the way that privilege operates in these contexts. 171 00:11:56,598 --> 00:12:01,368 So, for instance, the vocational rehab system. 172 00:12:02,039 --> 00:12:06,039 I've benefited greatly from the vocational rehab system so I don't want to just 173 00:12:06,221 --> 00:12:08,176 sit here and talk smack on it, right? 174 00:12:09,397 --> 00:12:15,879 The vocational rehab system has helped me get a van that I could drive, 175 00:12:16,921 --> 00:12:18,708 so I could get back and forth from 176 00:12:18,719 --> 00:12:23,390 my place of employment, from school, which was huge, right? 177 00:12:24,336 --> 00:12:28,771 But the only reason why I had access to that van was: 178 00:12:28,774 --> 00:12:34,209 A. Because I could afford the van itself, which not a lot of disabled people can do, 179 00:12:34,223 --> 00:12:37,912 especially if they aren't working yet and 180 00:12:37,912 --> 00:12:43,562 B. Because the VOC rehab counselor thought 181 00:12:43,562 --> 00:12:45,961 that I was worth the investment right? 182 00:12:46,594 --> 00:12:55,162 Someone who didn't have the advantages that I had, as far as the kind of 183 00:12:55,162 --> 00:13:04,902 disability that I have, my family's resources and my skin color and gender and 184 00:13:04,902 --> 00:13:09,832 all those things, it's very likely that rehab counselor would've said, 185 00:13:09,832 --> 00:13:11,524 "You cant take the bus," right? 186 00:13:12,058 --> 00:13:14,901 "We're not going to invest all of this money into helping 187 00:13:14,901 --> 00:13:17,178 you learn how to drive." 188 00:13:17,477 --> 00:13:21,116 Because they wouldn't have believed that they would get this return on their 189 00:13:21,116 --> 00:13:26,400 investment that the person would be able to get a well paying job, 190 00:13:26,948 --> 00:13:30,948 and so on and so forth, and so, I think that that's also 191 00:13:30,992 --> 00:13:36,182 a big issue that the ADA doesn't address, is this kind of intersectionality 192 00:13:36,182 --> 00:13:43,363 that gives some disabled people advantages within even the system 193 00:13:44,482 --> 00:13:50,717 that is designed to help them, and other people, of course, disadvantages, which is 194 00:13:50,741 --> 00:13:52,136 a real issue. 195 00:13:54,727 --> 00:14:01,618 Now, as far as my area of expertise, Bioethics, there's definitely been some 196 00:14:01,618 --> 00:14:06,268 ways in which the ADA has helped greatly, and other ways 197 00:14:06,268 --> 00:14:10,268 in which it hasn't really done much. 198 00:14:11,104 --> 00:14:15,104 So I'll start with the positivity, right? We'll start with the good news. 199 00:14:17,065 --> 00:14:21,065 One way in which I think, I can 200 00:14:21,092 --> 00:14:24,072 point to in a very concrete way in which 201 00:14:24,072 --> 00:14:26,683 the ADA has helped is 202 00:14:26,683 --> 00:14:29,807 when it comes to healthcare rationing so, 203 00:14:31,253 --> 00:14:36,209 The issue of healthcare in the United States of course is a very hot button 204 00:14:36,209 --> 00:14:47,639 topic and it's hot because there is sort of perceived lack of resources-- 205 00:14:47,755 --> 00:14:48,635 There's more need 206 00:14:49,003 --> 00:14:51,679 than there is supply for healthcare. 207 00:14:52,024 --> 00:15:00,833 And so, when we talk about expanding healthcare to a larger number of people, 208 00:15:01,991 --> 00:15:10,350 without also expanding the resources that are being devoted to healthcare, 209 00:15:11,135 --> 00:15:15,135 then that's gonna be a real problem, because some people aren't going to get 210 00:15:16,219 --> 00:15:18,329 as much as they need, right? 211 00:15:18,329 --> 00:15:21,605 You're going to have to sort of budget it, if you will. 212 00:15:22,119 --> 00:15:26,958 Or in the terms of bioethics, ration healthcare. 213 00:15:28,310 --> 00:15:35,342 Now this proved to be an issue because 214 00:15:37,812 --> 00:15:45,195 when it was done on smaller scale, for instance the state of Oregon, 215 00:15:46,510 --> 00:15:50,190 after the passage of the ADA-- I'm not sure exactly on the timeline, 216 00:15:50,190 --> 00:15:58,911 I'm not a historian--but the state of Oregon expanded their publicly provided 217 00:15:59,350 --> 00:16:06,713 healthcare to a larger number of people, and as they did that, they needed to 218 00:16:07,233 --> 00:16:13,460 make sure that they had a way of prioritizing what was covered 219 00:16:13,460 --> 00:16:14,840 and what was not covered. 220 00:16:14,840 --> 00:16:18,217 And so, as they did this, 221 00:16:19,290 --> 00:16:22,930 it became apparent that a lot of disabled people 222 00:16:22,930 --> 00:16:25,905 were being rationed out of the healthcare system. 223 00:16:26,572 --> 00:16:32,188 That a lot of things were not being covered for disabled folks 224 00:16:33,530 --> 00:16:35,304 that should be. 225 00:16:35,814 --> 00:16:44,108 And so, there was a series of lawsuits that were brought against 226 00:16:44,108 --> 00:16:50,238 the state of Oregon, that basically said that, "You couldn't discriminate 227 00:16:50,238 --> 00:16:56,421 against disabled people and not provide them with healthcare, 228 00:16:56,659 --> 00:16:58,383 based on their disability." 229 00:16:58,443 --> 00:17:00,830 That you couldn't sort of say, 230 00:17:00,830 --> 00:17:05,924 "Well, this person isn't going to get very much bang for their buck, 231 00:17:05,924 --> 00:17:09,356 they're not gonna end up being healthy anyway, 'cause they're still going 232 00:17:09,356 --> 00:17:13,356 to be disabled, so we're not going to give them this treatment option." 233 00:17:13,445 --> 00:17:20,356 Right? And so that was a big win within bioethics 234 00:17:20,356 --> 00:17:23,568 that was a direct result of the ADA. 235 00:17:24,560 --> 00:17:29,047 More recently, we've had a similar thing pop up 236 00:17:30,349 --> 00:17:34,349 because of the COVID-19 pandemic. 237 00:17:35,288 --> 00:17:43,770 Specifically, there are what are called "Emergency Healthcare Protocols" 238 00:17:44,099 --> 00:17:53,157 that are being developed for hospital systems and states that anticipate 239 00:17:53,455 --> 00:18:03,293 needing more intensive care unit beds, ventilators and so on and so forth, 240 00:18:03,465 --> 00:18:05,164 that aren't actually available. 241 00:18:05,195 --> 00:18:09,338 And so we need some way of figuring out who gets the ventilator, 242 00:18:09,367 --> 00:18:11,530 who gets the Intensive Care Unit bed, 243 00:18:12,057 --> 00:18:18,857 and so on and so forth, as the pandemic increases and goes on. 244 00:18:19,794 --> 00:18:25,681 And so there was some protocols that were developed 245 00:18:25,976 --> 00:18:29,047 that were very discriminatory against disabled people. 246 00:18:29,776 --> 00:18:36,603 There was one in Alabama specifically, that said that anybody 247 00:18:36,603 --> 00:18:41,116 with an intellectual disability or with dementia was going to be 248 00:18:41,912 --> 00:18:50,257 deprioritized from getting these life- saving resources if they got COVID-19. 249 00:18:51,321 --> 00:18:57,716 And there was one in Washington state, that was pretty discriminatory against 250 00:18:58,535 --> 00:19:07,912 disabled folks and said that if you had a disability 251 00:19:08,348 --> 00:19:15,123 that meant that even after treatment you are still going to be disabled, 252 00:19:16,320 --> 00:19:22,195 that you would be deprioritized from getting the life-saving, life support 253 00:19:22,485 --> 00:19:24,205 treatment for COVID-19. 254 00:19:24,361 --> 00:19:28,481 So there was a variety of these all over the United States 255 00:19:29,934 --> 00:19:36,049 that were really problematic and that explicitly were discriminating 256 00:19:36,049 --> 00:19:40,412 against disabled people when it came to getting treatment for COVID 257 00:19:41,515 --> 00:19:49,838 and so in response, there were some folks from protection and advocacy agencies, 258 00:19:49,838 --> 00:19:54,266 which are sort of these-- Disability Rights California is one, 259 00:19:54,955 --> 00:20:00,895 and each state has protection and advocacy agencies that are federally funded, 260 00:20:01,202 --> 00:20:05,760 non-profit law firms that protect the rights of disabled people and so they 261 00:20:05,760 --> 00:20:14,053 sued these states and these hospital systems and got the federal government to 262 00:20:14,595 --> 00:20:22,575 provide guidelines for treatment ration protocols that basically say 263 00:20:22,951 --> 00:20:26,024 that you can't discriminate against disabled people in this way. 264 00:20:26,613 --> 00:20:34,215 That the only time that you can withhold treatment for COVID-19 is if there is 265 00:20:34,215 --> 00:20:40,406 sort of a very clear way in which the disability means that person would not 266 00:20:40,406 --> 00:20:45,356 benefit from the treatment, that, you know they have the kind of disability 267 00:20:45,967 --> 00:20:50,527 that would make it very, very unlikely that they would survive the virus 268 00:20:50,527 --> 00:20:58,017 even with some kind of ventilator or intensive care situation. 269 00:20:58,847 --> 00:21:03,458 And so, that's of course very different because something like needing 270 00:21:03,458 --> 00:21:09,472 an assistive device like a wheelchair or needing help dressing and bathing 271 00:21:09,714 --> 00:21:17,962 or having these things that would've meant that people would be rationed out 272 00:21:17,962 --> 00:21:21,490 under some of these protocols have nothing to do with whether or not 273 00:21:28,432 --> 00:21:42,011 So of course this is a really good thing that these protocols were changed because 274 00:21:43,216 --> 00:21:47,216 there were a lot of them that would have rationed people out 275 00:21:47,308 --> 00:21:51,674 for reasons that had nothing to do with whether or not they'll survive 276 00:21:51,674 --> 00:21:53,632 the virus with treatment, Right? 277 00:21:53,648 --> 00:21:59,198 So whether you use a wheelchair, or need a personal attendant for things 278 00:21:59,198 --> 00:22:01,343 like dressing and bathing, whether or not 279 00:22:01,343 --> 00:22:04,533 you have an intellectual disability 280 00:22:04,533 --> 00:22:11,444 These are reasons that were being used to deny people treatment for COVID-19 that 281 00:22:11,444 --> 00:22:16,203 have nothing to do with whether or not they would survive the disease. So, 282 00:22:17,327 --> 00:22:24,375 These advocacy efforts that were based on the American with Disabilities Act 283 00:22:25,678 --> 00:22:31,728 sort of made that illegal to do, which is of course a really important thing it's 284 00:22:31,728 --> 00:22:34,589 literally saved peoples lives presumably. 285 00:22:36,806 --> 00:22:45,986 So thats the good news as far as my field of work and the ways in which ADA has 286 00:22:46,060 --> 00:22:53,335 made an impact, but of course that isn't the only story. 287 00:22:53,755 --> 00:22:56,167 There are lots of ways in which 288 00:22:57,537 --> 00:23:06,916 bioethics can and has been discriminatory towards disabled people in ways that isn't 289 00:23:07,537 --> 00:23:12,551 addressed by the ADA and that can't really be addressed by the ADA because of the way 290 00:23:13,531 --> 00:23:16,597 it's written and the kinds of problems it was designed to solve. 291 00:23:17,474 --> 00:23:27,393 For instance, there is a lot of controversy over the development of 292 00:23:28,535 --> 00:23:30,834 different reproductive technologies 293 00:23:31,496 --> 00:23:37,742 that are designed to prevent the birth of disabled children. 294 00:23:38,659 --> 00:23:43,969 With intellectual disabilities, with down syndrome, 295 00:23:44,224 --> 00:23:47,344 with disabilities like mine, dwarfism. 296 00:23:48,275 --> 00:23:54,736 with disabilities like certain kinds of genetically linked deafness, and so on. 297 00:23:55,487 --> 00:24:00,000 And so we have an entire industry aimed 298 00:24:00,078 --> 00:24:04,078 at genetic testing for these kind of 299 00:24:04,371 --> 00:24:08,901 disabilities and the prevention of the 300 00:24:08,901 --> 00:24:10,194 birth of children 301 00:24:10,194 --> 00:24:11,777 with these disabilities with 302 00:24:12,550 --> 00:24:16,550 selective abortion or, now, selective implantation, 303 00:24:16,943 --> 00:24:20,167 which is when you test embryos 304 00:24:20,167 --> 00:24:21,857 and then pick the one that you want 305 00:24:22,385 --> 00:24:24,476 to give birth to. 306 00:24:25,034 --> 00:24:27,038 And then coming down the pipeline 307 00:24:27,038 --> 00:24:31,251 is CRISPR, which will be a technology 308 00:24:31,868 --> 00:24:35,419 that doesn't select a particular embryo 309 00:24:35,419 --> 00:24:37,747 but rather modifies the embryo itself. 310 00:24:39,213 --> 00:24:42,052 It sort of-- what's sometimes referred to 311 00:24:42,052 --> 00:24:44,245 as gene editing or genetic engineering. 312 00:24:45,204 --> 00:24:47,580 And that isn't a reality yet, but 313 00:24:48,137 --> 00:24:50,589 scientists are certainly working toward 314 00:24:51,684 --> 00:24:53,885 the use of that technology to prevent 315 00:24:53,885 --> 00:24:54,849 disability. 316 00:24:55,135 --> 00:24:59,595 Now it's something that of course makes 317 00:24:59,595 --> 00:25:01,521 a lot of people with these disabilities 318 00:25:02,050 --> 00:25:05,348 very uncomfortable because of 319 00:25:05,348 --> 00:25:09,068 the message that it might send, right? 320 00:25:09,068 --> 00:25:11,284 It might send the message that, 321 00:25:11,284 --> 00:25:13,567 "People like you aren't wanted 322 00:25:13,567 --> 00:25:15,505 in the world." Right? "we don't 323 00:25:15,505 --> 00:25:16,805 need more like you." 324 00:25:17,693 --> 00:25:22,555 And so, it is sorta of based on, largely, 325 00:25:23,722 --> 00:25:27,722 stigma around disability, around ideas 326 00:25:27,776 --> 00:25:30,306 about quality of life with disabled people 327 00:25:30,370 --> 00:25:32,420 that, "if you have a disability, you must 328 00:25:32,420 --> 00:25:35,150 be miserable, and so we must do everything 329 00:25:35,150 --> 00:25:37,690 we can to prevent more like you from 330 00:25:37,690 --> 00:25:40,193 coming into existence," and so on and so 331 00:25:40,193 --> 00:25:40,903 forth. 332 00:25:41,749 --> 00:25:45,749 Now, this is a real problem because, 333 00:25:45,984 --> 00:25:53,121 of course, it comes into conflict with 334 00:25:53,264 --> 00:25:55,499 values a lot of people hold around 335 00:25:55,499 --> 00:25:58,499 reproductive liberty, around women being 336 00:25:58,499 --> 00:26:00,515 able to make choices for themselves 337 00:26:00,515 --> 00:26:03,646 about their own bodies, and about their 338 00:26:03,646 --> 00:26:06,919 own lives, and so on and so forth. 339 00:26:07,763 --> 00:26:13,250 And so, this has created a tension between 340 00:26:14,397 --> 00:26:18,994 disability bioethics and other kinds of 341 00:26:19,618 --> 00:26:23,618 progressive groups that are wanting to 342 00:26:24,774 --> 00:26:28,336 promote freedom and justice for everybody. 343 00:26:28,549 --> 00:26:31,053 And so the ADA, you know, isn't designed 344 00:26:31,053 --> 00:26:32,823 to handle something like this because 345 00:26:32,823 --> 00:26:36,023 it's not about overt discrimination 346 00:26:36,023 --> 00:26:41,900 against people, but rather it's about 347 00:26:41,900 --> 00:26:45,900 attitudes about beliefs, about disability, 348 00:26:45,900 --> 00:26:47,807 that drive personal decisions. 349 00:26:49,043 --> 00:26:53,255 And so it's really really hard to address 350 00:26:53,255 --> 00:26:57,866 this as a policy problem because you know 351 00:26:57,875 --> 00:27:03,575 people aren't going to be very keen on 352 00:27:03,575 --> 00:27:06,975 restricting the kind of decisions women 353 00:27:06,975 --> 00:27:10,975 and families can make about reproduction. 354 00:27:11,869 --> 00:27:14,428 But at the same time, we want to promote 355 00:27:14,943 --> 00:27:17,893 good beliefs, and true beliefs, and good 356 00:27:17,893 --> 00:27:20,619 attitudes about disability, and the ways 357 00:27:20,619 --> 00:27:22,597 in which it contributes to the world, 358 00:27:22,729 --> 00:27:25,037 in the ways in which disabilities form 359 00:27:25,037 --> 00:27:26,754 a diversity that's important that we 360 00:27:26,754 --> 00:27:28,334 don't want to eliminate. 361 00:27:28,462 --> 00:27:34,935 And so that's, I think, a task for folks 362 00:27:34,935 --> 00:27:37,452 like myself in bioethics that are writing 363 00:27:37,452 --> 00:27:39,973 about these issues, that are trying to 364 00:27:40,011 --> 00:27:45,453 make arguments that are able to walk this 365 00:27:45,453 --> 00:27:48,556 very thin line between saying, 366 00:27:48,556 --> 00:27:52,743 "Okay, you know disability is the kind of 367 00:27:52,743 --> 00:27:58,974 thing that is not a horrible life sentence 368 00:27:58,974 --> 00:28:02,000 of misery," and so we don't want to make 369 00:28:02,000 --> 00:28:06,106 that assumption and we don't want to base 370 00:28:07,122 --> 00:28:09,603 the technologies that we develop or the 371 00:28:09,603 --> 00:28:12,168 decisions that we make on that assumption. 372 00:28:12,402 --> 00:28:15,225 But at the same time, we don't want to 373 00:28:15,225 --> 00:28:17,654 tell people what they can and can't do 374 00:28:17,654 --> 00:28:18,901 with their bodies. 375 00:28:19,502 --> 00:28:23,502 I think that, if I were to pick one thing 376 00:28:23,592 --> 00:28:28,352 to change, to try to give people with 377 00:28:28,352 --> 00:28:32,352 disabilities more access, and to remove 378 00:28:32,352 --> 00:28:36,352 barriers to a life of flourishing 379 00:28:36,352 --> 00:28:38,931 and opportunity for disabled people. 380 00:28:40,068 --> 00:28:50,474 I think I would go back to my birth story, 381 00:28:50,474 --> 00:28:52,196 my origin story if you will. 382 00:28:53,499 --> 00:28:58,790 When I was born, the doctor that delivered 383 00:28:58,790 --> 00:29:04,580 me looked at my body and he had never 384 00:29:04,580 --> 00:29:07,334 seen somebody with my kind of Dwarfism 385 00:29:07,334 --> 00:29:09,432 before, and didn't know much about it, 386 00:29:09,622 --> 00:29:11,218 and he told my parents, 387 00:29:13,154 --> 00:29:16,323 "he's not gonna do much, he's not going to be 388 00:29:16,323 --> 00:29:18,087 able to walk, he's not gonna be able 389 00:29:18,087 --> 00:29:20,025 to talk, he's not gonna be able to go to 390 00:29:20,025 --> 00:29:22,017 school," and so on and so forth. 391 00:29:22,700 --> 00:29:25,134 "You should place him in a 392 00:29:25,217 --> 00:29:27,144 state institution and 393 00:29:27,819 --> 00:29:30,048 go about your lives, forget about him." 394 00:29:31,091 --> 00:29:33,299 And they didn't do that, obviously. 395 00:29:33,299 --> 00:29:34,609 They chose not to do that. 396 00:29:34,609 --> 00:29:36,510 They took me home, they raised me 397 00:29:36,640 --> 00:29:39,479 like their kid because I was their kid. 398 00:29:40,484 --> 00:29:46,377 And so I think a lot about how different 399 00:29:46,674 --> 00:29:49,518 my life would be if I had been 400 00:29:49,518 --> 00:29:52,045 institutionalized from birth, as that 401 00:29:52,045 --> 00:29:53,649 doctor recommended. 402 00:29:55,219 --> 00:29:58,059 And then I think about how these 403 00:29:58,059 --> 00:29:59,812 institutions still exist. 404 00:30:00,951 --> 00:30:05,570 That when I was-- before I entered 405 00:30:05,570 --> 00:30:09,570 academia full-time, I worked as an 406 00:30:09,570 --> 00:30:13,570 advocate for a protection and advocacy 407 00:30:13,570 --> 00:30:16,740 agency in the state of Texas, where they 408 00:30:16,740 --> 00:30:18,270 have what are called, 409 00:30:19,834 --> 00:30:22,706 "state supported living centers," 410 00:30:23,176 --> 00:30:26,204 which are-- sort of a euphemism for 411 00:30:26,204 --> 00:30:28,484 state institutions where they warehouse 412 00:30:28,484 --> 00:30:31,356 people with intellectual disabilities and 413 00:30:31,356 --> 00:30:33,801 psychiatric disabilities of various kinds. 414 00:30:35,809 --> 00:30:37,807 Basically the kind of place that the 415 00:30:37,807 --> 00:30:40,100 doctor was recommending my parents 416 00:30:40,100 --> 00:30:43,770 to put me. They still exist, almost forty 417 00:30:43,770 --> 00:30:46,464 years later. This is not okay. 418 00:30:47,994 --> 00:30:50,334 And it's not just these kind of places 419 00:30:50,334 --> 00:30:52,073 that are really problematic. 420 00:30:53,082 --> 00:30:55,047 Nursing homes, there's lots of disabled 421 00:30:55,047 --> 00:30:56,777 people in nursing homes. 422 00:30:56,959 --> 00:30:59,262 Even some group home systems 423 00:30:59,830 --> 00:31:03,830 that are corporate, that are designed to 424 00:31:03,830 --> 00:31:07,630 make money, and not to make sure that 425 00:31:07,630 --> 00:31:11,725 the people living there are actually living 426 00:31:11,725 --> 00:31:13,422 good lives, right? 427 00:31:14,821 --> 00:31:18,821 This is a serious problem when you 428 00:31:19,536 --> 00:31:23,536 take people and you put them in 429 00:31:23,663 --> 00:31:26,782 a situation where they don't have control 430 00:31:26,782 --> 00:31:30,782 over the basic decisions of their life: 431 00:31:30,865 --> 00:31:33,684 what they eat for their meals, when they 432 00:31:33,684 --> 00:31:35,093 wake up, when they go to bed, 433 00:31:35,093 --> 00:31:37,881 how they spend their time, what they wear. 434 00:31:37,881 --> 00:31:41,881 When I was working as an advocate going 435 00:31:41,881 --> 00:31:43,951 in to the state institutions in Texas, 436 00:31:43,951 --> 00:31:46,547 I remember sitting in a meeting where it 437 00:31:46,547 --> 00:31:53,012 was discussed about my clients eating 438 00:31:53,012 --> 00:31:57,012 habits. How apart of his behavioral 439 00:31:57,012 --> 00:32:02,217 support plan was that they had his helper 440 00:32:03,977 --> 00:32:07,857 try to get him to take a sip of water 441 00:32:07,857 --> 00:32:10,837 between every bite of food that he took 442 00:32:11,820 --> 00:32:14,188 during meal time. I thought to myself, 443 00:32:14,188 --> 00:32:17,137 "how absurd!" This is a grown adult 444 00:32:17,137 --> 00:32:23,581 person that they are trying to micromanage 445 00:32:23,581 --> 00:32:25,968 down to the very last detail of his life 446 00:32:26,504 --> 00:32:29,880 and trying to control everything about 447 00:32:29,880 --> 00:32:33,880 what he does. That's horrific I can't 448 00:32:33,974 --> 00:32:36,563 imagine living under that kind of 449 00:32:36,563 --> 00:32:39,341 condition. Where not even being able to 450 00:32:39,341 --> 00:32:42,265 eat my meals in peace without someone 451 00:32:42,265 --> 00:32:44,179 telling me what to do and how to do it. 452 00:32:44,179 --> 00:32:48,483 Right? And so you know I think that this 453 00:32:48,483 --> 00:32:51,149 lack of control over basic decisions of 454 00:32:51,149 --> 00:32:54,434 your life is a real problem for a large 455 00:32:54,434 --> 00:32:58,361 number of disabled people still even you 456 00:32:58,361 --> 00:33:01,168 know 30 years after the passage of the 457 00:33:01,168 --> 00:33:04,468 ADA. So if there is one thing that I 458 00:33:04,468 --> 00:33:06,643 could sort of wave a magic wand and change 459 00:33:06,643 --> 00:33:09,101 it would be that. It would be developing 460 00:33:09,101 --> 00:33:11,771 systems where people are truly supported 461 00:33:12,542 --> 00:33:16,232 to be able to flourish as they are, but 462 00:33:16,232 --> 00:33:21,292 not controlled. Right? Not told what to 463 00:33:21,292 --> 00:33:23,303 do and when to do it every moment of their 464 00:33:23,303 --> 00:33:25,389 lives. Where they can make their own 465 00:33:25,389 --> 00:33:28,801 decisions and have agency over their own 466 00:33:28,801 --> 00:33:34,661 lives. I think that's what is missing for a 467 00:33:34,661 --> 00:33:37,351 large number of disabled people still even 468 00:33:37,351 --> 00:33:41,051 after the ADA. And that we need to do 469 00:33:41,051 --> 00:33:44,395 something about that. I think that there 470 00:33:44,395 --> 00:33:46,015 is a few things that we can do. 471 00:33:46,015 --> 00:33:48,230 First, educate your self on the issues. 472 00:33:48,230 --> 00:33:50,655 Right? Educate your self on the issues 473 00:33:50,655 --> 00:33:53,340 beyond just how they effect you. Right? 474 00:33:53,340 --> 00:33:57,340 I think that within the disability 475 00:33:57,340 --> 00:34:01,540 movements there is sort of pockets of 476 00:34:01,540 --> 00:34:03,456 different people doing different things. 477 00:34:03,456 --> 00:34:05,636 And that's fine. But, I think we need to 478 00:34:05,636 --> 00:34:07,915 talk to each other more. We need to 479 00:34:07,915 --> 00:34:13,541 realize that disability issues go beyond 480 00:34:14,113 --> 00:34:17,763 our limited experience. Right? So we need 481 00:34:17,763 --> 00:34:21,763 to be aware of the ways in which 482 00:34:22,099 --> 00:34:24,973 disability disadvantages people 483 00:34:24,973 --> 00:34:27,159 differently. That the experience of 484 00:34:27,159 --> 00:34:29,761 disability is not an experience it's many 485 00:34:29,761 --> 00:34:32,830 experiences. And so, we need to listen to 486 00:34:32,830 --> 00:34:35,168 each other and hear from each other about 487 00:34:35,411 --> 00:34:38,961 the ways in which we are suffering and 488 00:34:38,961 --> 00:34:41,781 hurting. Because, of disability 489 00:34:41,781 --> 00:34:43,522 discrimination because it looks very 490 00:34:43,522 --> 00:34:46,251 different between different people. And so 491 00:34:46,710 --> 00:34:49,471 having a richer fuller understanding 492 00:34:49,802 --> 00:34:53,034 of the problem I think is the first step. 493 00:34:53,382 --> 00:34:56,665 Then beyond that sort of talking to people 494 00:34:56,665 --> 00:35:00,665 about strategies that they have and learn from 495 00:35:00,665 --> 00:35:03,969 each other about you know maybe some 496 00:35:03,969 --> 00:35:07,969 strategy that works for you know the deaf 497 00:35:07,978 --> 00:35:11,238 community would work really well for the 498 00:35:11,238 --> 00:35:13,742 dwarf community and maybe we haven't talked 499 00:35:13,742 --> 00:35:17,742 to each other very well about different 500 00:35:17,742 --> 00:35:19,739 political strategies to try to get what 501 00:35:19,739 --> 00:35:23,369 we need in order to live well. And maybe 502 00:35:23,369 --> 00:35:27,369 we should. Right? So, educate ourselves 503 00:35:27,558 --> 00:35:30,164 about the struggle of others you know 504 00:35:30,164 --> 00:35:32,407 because it's important to know and then 505 00:35:32,407 --> 00:35:35,523 share information and share strategies on 506 00:35:35,677 --> 00:35:39,302 how to effectively advocate and come 507 00:35:39,302 --> 00:35:43,085 together and fight together. Right? If you 508 00:35:43,085 --> 00:35:48,129 show up for someone on issue A that they 509 00:35:48,129 --> 00:35:50,309 are having then they're more likely to show 510 00:35:50,326 --> 00:35:52,268 up for you on issue B that your having. 511 00:35:52,339 --> 00:35:55,879 And, so building solidary across the 512 00:35:55,879 --> 00:35:59,372 movement more effectively. Recognizing 513 00:35:59,663 --> 00:36:03,070 the ways in which other oppressions 514 00:36:03,070 --> 00:36:06,933 intersect with disability and change the 515 00:36:06,933 --> 00:36:10,253 nature of disability oppression. These 516 00:36:10,253 --> 00:36:13,806 would be my recommendations of what to do. 517 00:36:13,806 --> 00:36:16,826 Just basically raising your awareness 518 00:36:16,826 --> 00:36:19,936 of discrimination beyond just your own 519 00:36:19,936 --> 00:36:21,440 experience.