WEBVTT 00:00:00.000 --> 00:00:05.276 Hi, my name is Joseph Scamardo and I am an assistant professor of philosophy 00:00:05.276 --> 00:00:09.241 and associate Director of the I nstitute of Public Affairs 00:00:09.241 --> 00:00:11.449 at San Diego State University. NOTE Paragraph 00:00:11.449 --> 00:00:16.328 I specialize in philosophy disability and bioethics 00:00:16.581 --> 00:00:19.151 I also identify as disabled. 00:00:19.151 --> 00:00:22.259 I have a spinal cord injury 00:00:22.259 --> 00:00:25.424 as well as a rare kind of dwarfism, and so 00:00:25.424 --> 00:00:28.567 you get two for the price of one with me. 00:00:28.809 --> 00:00:35.887 So my first memory of discrimination was 00:00:36.589 --> 00:00:40.589 well, it's hard to say 00:00:43.296 --> 00:00:47.116 I have lots of memories as far as 00:00:47.116 --> 00:00:51.773 the experience of stigma or bigotry 00:00:51.773 --> 00:00:54.819 mostly around my dwarfism. 00:00:54.819 --> 00:00:56.410 and so, you know 00:00:56.410 --> 00:01:00.248 I have lot's of early memories around that 00:01:00.248 --> 00:01:03.533 with children staring and laughing 00:01:03.533 --> 00:01:07.765 and that sort of thing from a very young age. 00:01:10.104 --> 00:01:13.498 Then as far as, sort of 00:01:13.498 --> 00:01:15.493 a more systematic discrimination 00:01:15.493 --> 00:01:17.430 that sort of excluded me from something 00:01:17.430 --> 00:01:22.343 that I wanted to do. 00:01:22.343 --> 00:01:25.849 I had a pretty good experience as a child, 00:01:25.849 --> 00:01:31.055 mostly because my parents really did a lot 00:01:31.055 --> 00:01:33.940 to make sure I was included. 00:01:33.940 --> 00:01:37.254 I can remember being in boy scouts 00:01:37.254 --> 00:01:39.157 and cub scouts when I was a kid 00:01:39.157 --> 00:01:42.611 and my father, really doing a lot with me 00:01:42.611 --> 00:01:47.682 to ensure my inclusion of my disability 00:01:48.509 --> 00:01:50.699 You know going on camping trips with me 00:01:50.699 --> 00:01:53.489 and sorts of acting as a personal attendant 00:01:53.489 --> 00:01:56.501 kind of thing to make sure that I was able 00:01:56.501 --> 00:01:57.732 to go and participate 00:01:57.732 --> 00:02:00.315 and that sort of thing 00:02:00.551 --> 00:02:03.971 And so the first real experience 00:02:03.971 --> 00:02:06.023 of exclusion that I can remember 00:02:06.023 --> 00:02:07.799 happened when it was time 00:02:07.799 --> 00:02:09.349 to go to high school. 00:02:09.349 --> 00:02:10.988 I had gone to public schools 00:02:10.988 --> 00:02:13.812 in my town up until the 8th grade 00:02:13.812 --> 00:02:17.228 and then when it came to high school, 00:02:17.228 --> 00:02:21.228 I was supposed to do the same 00:02:21.228 --> 00:02:25.131 private religiously sort of oriented 00:02:25.131 --> 00:02:27.837 school that my older siblings when to 00:02:27.837 --> 00:02:30.300 and I took the entrance exam and even got 00:02:30.300 --> 00:02:33.170 a small scholarship to go and everything 00:02:33.170 --> 00:02:36.150 but it didn't have an elevator, 00:02:36.150 --> 00:02:39.847 and so I used a motorized scooter 00:02:39.847 --> 00:02:42.610 to get around, and it was 00:02:42.610 --> 00:02:44.260 going to be impossible for me to 00:02:44.260 --> 00:02:47.780 attend that school, because there was no 00:02:47.780 --> 00:02:49.810 elevator. Now this was actually 00:02:49.810 --> 00:02:51.960 after the passage of the ADA, 00:02:52.668 --> 00:02:55.448 but because it was 00:02:55.448 --> 00:02:58.288 a religiously oriented school, 00:02:58.288 --> 00:03:00.058 it was exempt from the requirements 00:03:00.058 --> 00:03:01.288 of the ADA. 00:03:01.288 --> 00:03:05.248 And so, I didn't have any leverage with 00:03:05.248 --> 00:03:06.696 that law. 00:03:06.696 --> 00:03:09.746 To be able to get them 00:03:09.746 --> 00:03:11.673 to make accommodations for me and so 00:03:11.673 --> 00:03:12.610 I ended up going to the public school in my town NOTE Paragraph 00:03:14.548 --> 00:03:16.473 which actually, personally, I was pretty happy about anyway 00:03:17.473 --> 00:03:19.713 because that's where all my friends were going 00:03:20.049 --> 00:03:24.049 But it still sort of clued me in 00:03:24.421 --> 00:03:26.931 to the fact 00:03:27.013 --> 00:03:29.353 not everything is accessible 00:03:29.573 --> 00:03:32.723 not everything is designed for me and that 00:03:32.723 --> 00:03:34.259 this was going to be something 00:03:34.259 --> 00:03:35.869 I was gonna have to figure out 00:03:35.869 --> 00:03:37.164 throughout my life. 00:03:38.242 --> 00:03:43.732 As far as remembering the ADA 00:03:43.732 --> 00:03:44.882 and sort of its passage 00:03:44.882 --> 00:03:45.992 and that sort of thing, 00:03:45.992 --> 00:03:48.466 I was pretty young when it was passed 00:03:48.472 --> 00:03:51.249 I'm sometimes referred to as a part of the 00:03:51.249 --> 00:03:53.213 ADA generation, which means that 00:03:54.723 --> 00:03:57.500 I sort of grew up with thr ADA mostly 00:03:58.478 --> 00:03:59.830 I was born in 1982 00:04:00.381 --> 00:04:02.991 and so I was 8 or 9 years old when the ADA 00:04:02.996 --> 00:04:06.499 passed, and so I don't really have 00:04:06.499 --> 00:04:08.506 any kind of recollection of, "Aha!" 00:04:08.914 --> 00:04:12.487 That's the moment that is passed. 00:04:12.505 --> 00:04:16.171 And the recall of where I was at the time 00:04:16.171 --> 00:04:17.226 or anything like this, 00:04:17.721 --> 00:04:19.744 but I do remember my father explaining 00:04:19.744 --> 00:04:23.842 it to me, around the time of my 00:04:24.461 --> 00:04:25.686 start of high school. 00:04:26.666 --> 00:04:28.276 When I experienced this with that 00:04:28.276 --> 00:04:32.107 private catholic school, and you know 00:04:32.471 --> 00:04:34.044 having that sort of systemic 00:04:34.798 --> 00:04:39.298 discrimination experience and he explained 00:04:39.348 --> 00:04:43.951 that public schools, and other kinds of 00:04:43.951 --> 00:04:48.855 public places were accessible to me 00:04:48.855 --> 00:04:51.697 because of the ADA and that there was NOTE Paragraph 00:04:51.697 --> 00:04:53.924 this law that said that things had to be 00:04:54.596 --> 00:04:56.214 accessible to people 00:04:56.214 --> 00:04:57.357 who use wheelchairs, and 00:04:57.357 --> 00:05:00.215 motorized scooter like I did at the time 00:05:00.215 --> 00:05:01.956 And so that was my first sort of 00:05:01.956 --> 00:05:04.654 awareness of the ADA, as well as my first 00:05:04.654 --> 00:05:07.040 awareness of discrimination, which is 00:05:07.790 --> 00:05:08.870 kind of cool. I think? 00:05:08.870 --> 00:05:11.536 Because it was neat to have 00:05:11.536 --> 00:05:13.573 that experience of, "Okay, well NOTE Paragraph 00:05:13.573 --> 00:05:16.554 this is something that's going to be a challenge for you, 00:05:16.913 --> 00:05:20.130 and here's how you're protected, and here's how you can do something 00:05:20.130 --> 00:05:23.441 about it." And so in a way, it was sort of, 00:05:24.129 --> 00:05:26.144 my awakening into advocacy as well. 00:05:30.477 --> 00:05:35.076 Now, as far as the difference that the ADA has made in my life, 00:05:36.124 --> 00:05:45.319 or the life of others, I think that it's been, of course 00:05:45.579 --> 00:05:52.065 an incredibly important law that has opened up all sorts of oportunities 00:05:52.209 --> 00:05:58.279 to people, everything from public transportation, to be able to move around 00:05:58.279 --> 00:06:06.519 your community, the homestead decision is based on ADA, which says that people 00:06:06.519 --> 00:06:10.436 need to be--when they need any kind of long time care, 00:06:10.436 --> 00:06:14.090 they need to be served in the least restrictive environment, meaning that 00:06:14.090 --> 00:06:18.504 you can't just institutionalize or warehouse somebody because it's more 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 00:06:24.317 --> 00:06:28.519 or somewhere that is going to be best for them. 00:06:31.580 --> 00:06:39.140 What else did the ADA do? Just the ability to you know, get an education, 00:06:39.462 --> 00:06:45.175 the ability to get a job, all of these things, for me and for others, 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 00:06:52.500 --> 00:06:54.367 prior to the ADA, honestly. 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 00:06:58.637 --> 00:06:59.508 experience it. 00:07:00.179 --> 00:07:07.989 The ADA makes a difference in a wide range of personal experiences 00:07:08.049 --> 00:07:14.756 and also a wide range of sort of disability politics issues. Right? 00:07:15.502 --> 00:07:27.048 So, my personal experience that I think most recently has been impacted by the ADA 00:07:28.187 --> 00:07:38.086 has been just my ability to live an independent life with my two kids. 00:07:38.919 --> 00:07:44.430 I think prior to the ADA, it would've been much harder to do that. 00:07:45.115 --> 00:07:51.838 You know raising kids means that I have to go into lots of different public spaces 00:07:52.097 --> 00:07:58.354 and do different things that I might not have been 'required' to do, if you will, 00:07:59.064 --> 00:08:02.495 professionally, or just sort of in everyday life, if I didn't have them. 00:08:02.495 --> 00:08:07.517 So going to the zoo, or going to the grocery store, for that last minute item 00:08:07.517 --> 00:08:16.315 or you know, just whatever it might be, I think that, you know-- 00:08:16.733 --> 00:08:20.122 opening up the daycare centers, and so on and so forth. 00:08:20.122 --> 00:08:24.122 The ADA sort of opened all of that up to me, as a wheelchair user 00:08:24.139 --> 00:08:31.470 and so, that's where it's made a big personal impact in my life recently. 00:08:33.410 --> 00:08:39.971 Now, I think that the one thing that I can sort of speak to, professionally, 00:08:39.971 --> 00:08:49.711 about the ADA and its impact or lack of impact is probably, two-fold: 00:08:49.711 --> 00:09:00.417 One, is the ways in which my privilege as a physically disabled-- 00:09:01.159 --> 00:09:04.394 there's a disability hierarchy of course, and so physical disability 00:09:04.394 --> 00:09:10.715 is usually at the top of that hierarchy, with psychiatric disabilities 00:09:10.715 --> 00:09:13.104 and intellectual developmental disabilities, 00:09:13.104 --> 00:09:15.064 are sort of lower down on the hierarchy. 00:09:15.609 --> 00:09:22.426 And so, as a physically disabled, cisgender, heterosexual white guy, 00:09:22.988 --> 00:09:27.834 I've benefited a lot more from the ADA than lots of other people 00:09:29.357 --> 00:09:32.226 that don't have those kinds of privileges. 00:09:33.417 --> 00:09:40.235 I think for instance about how the ADA is designed, really 00:09:40.254 --> 00:09:43.815 to promote what you'd think of as equality of opportunity, 00:09:45.118 --> 00:09:50.651 meaning that everybody has an equal opportunity to compete within sort of the 00:09:51.065 --> 00:10:01.731 economic life of the United States, and so, it allows you to enter into the 00:10:01.731 --> 00:10:05.245 workforce and enter into the educational system and so on and so forth 00:10:05.245 --> 00:10:06.350 then compete. 00:10:06.350 --> 00:10:12.380 But what it doesn't do is it doesn't address any of the other advantages 00:10:12.380 --> 00:10:21.119 or disadvantages that intersect with ableism. So that's sort of something 00:10:21.119 --> 00:10:25.119 that is I think, a real problem, with the ADA. 00:10:25.918 --> 00:10:29.918 I'm a well-educated person, I have a master's degree and a Ph.D. 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 00:10:39.621 --> 00:10:43.621 if I didn't have these other privileges that I do have, 00:10:44.339 --> 00:10:48.119 that the ADA doesn't do anything to address, it just sort of treats 00:10:48.248 --> 00:10:52.700 all disabled people as if they were the same, and as if the only thing 00:10:52.700 --> 00:10:56.700 they have to deal with is structural ableism, and that's just not true, right? 00:10:58.333 --> 00:11:06.704 I think another thing about disability that the ADA doesn't address 00:11:08.118 --> 00:11:19.088 is economics, in that, I think that despite the ability to compete, 00:11:20.286 --> 00:11:27.310 a lot of disabled people still live in extreme poverty, because of other 00:11:27.310 --> 00:11:30.750 things that make it impossible for them to compete, 00:11:30.750 --> 00:11:32.670 other than just their disability. 00:11:34.544 --> 00:11:43.089 And so, the real sad part to me about that is you look at other systems 00:11:43.089 --> 00:11:47.089 that are designed to help disabled people get out of poverty, 00:11:47.089 --> 00:11:56.392 and even they don't recognize the way that privilege operates in these contexts. 00:11:56.598 --> 00:12:01.368 So, for instance, the vocational rehab system. 00:12:02.039 --> 00:12:06.039 I've benefited greatly from the vocational rehab system so I don't want to just 00:12:06.221 --> 00:12:08.176 sit here and talk smack on it, right? 00:12:09.397 --> 00:12:15.879 The vocational rehab system has helped me get a van that I could drive, 00:12:16.921 --> 00:12:18.708 so I could get back and forth from 00:12:21.022 --> 00:12:22.022 my place of employment, from school, which was huge, right? 00:12:24.336 --> 00:12:28.771 But the only reason why I had access to that van was: 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 00:12:34.223 --> 00:12:37.912 especially if they aren't working yet and 00:12:37.912 --> 00:12:43.562 B. Because the VOC rehab counselor thought 00:12:43.562 --> 00:12:45.961 that I was worth the investment right? 00:12:46.594 --> 00:12:55.162 Someone who didn't have the advantages that I had, as far as the kind of 00:12:55.162 --> 00:13:04.902 disability that I have, my family's resources and my skin color and gender and 00:13:04.902 --> 00:13:09.832 all those things, it's very likely that rehab counselor would've said, 00:13:09.832 --> 00:13:11.524 "You cant take the bus," right? 00:13:12.058 --> 00:13:14.901 "We're not going to invest all of this money into helping 00:13:14.901 --> 00:13:17.178 you learn how to drive." 00:13:17.477 --> 00:13:21.116 Because they wouldn't have believed that they would get this return on their 00:13:21.116 --> 00:13:26.400 investment that the person would be able to get a well paying job, 00:13:26.948 --> 00:13:30.948 and so on and so forth, and so, I think that that's also 00:13:30.992 --> 00:13:36.182 a big issue that the ADA doesn't address, is this kind of intersectionality 00:13:36.182 --> 00:13:43.363 that gives some disabled people advantages within even the system 00:13:44.482 --> 00:13:50.717 that is designed to help them, and other people, of course, disadvantages, which is 00:13:50.741 --> 00:13:52.136 a real issue. 00:13:54.727 --> 00:14:01.618 Now, as far as my area of expertise, Bioethics, there's definitely been some 00:14:01.618 --> 00:14:06.268 ways in which the ADA has helped greatly, and other ways 00:14:06.268 --> 00:14:10.268 in which it hasn't really done much. 00:14:11.104 --> 00:14:15.104 So I'll start with the positivity, right? We'll start with the good news. NOTE Paragraph 00:14:17.065 --> 00:14:21.065 One way in which I think, I can 00:14:21.092 --> 00:14:24.072 point to in a very concrete way in which NOTE Paragraph 00:14:24.072 --> 00:14:26.683 the ADA has helped is 00:14:26.683 --> 00:14:29.807 when it comes to healthcare rationing so, 00:14:31.253 --> 00:14:36.209 The issue of healthcare in the United States of course is a very hot button 00:14:36.209 --> 00:14:47.639 topic and it's hot because there is sort of perceived lack of resources-- 00:14:47.755 --> 00:14:48.635 There's more need 00:14:49.003 --> 00:14:51.679 than there is supply for healthcare. 00:14:52.024 --> 00:15:00.833 And so, when we talk about expanding healthcare to a larger number of people, 00:15:01.991 --> 00:15:10.350 without also expanding the resources that are being devoted to healthcare, 00:15:11.135 --> 00:15:15.135 then that's gonna be a real problem, because some people aren't going to get 00:15:16.219 --> 00:15:18.329 as much as they need, right? 00:15:18.329 --> 00:15:21.605 You're going to have to sort of budget it, if you will. 00:15:22.119 --> 00:15:26.958 Or in the terms of bioethics, ration healthcare. 00:15:28.310 --> 00:15:35.342 Now this proved to be an issue because 00:15:37.812 --> 00:15:45.195 when it was done on smaller scale, for instance the state of Oregon, 00:15:46.510 --> 00:15:50.190 after the passage of the ADA-- I'm not sure exactly on the timeline, 00:15:50.190 --> 00:15:58.911 I'm not a historian--but the state of Oregon expanded their publicly provided 00:15:59.350 --> 00:16:06.713 healthcare to a larger number of people, and as they did that, they needed to 00:16:07.233 --> 00:16:13.460 make sure that they had a way of prioritizing what was covered 00:16:13.460 --> 00:16:14.840 and what was not covered. 00:16:14.840 --> 00:16:18.217 And so, as they did this, 00:16:19.290 --> 00:16:22.930 it became apparent that a lot of disabled people 00:16:22.930 --> 00:16:25.905 were being rationed out of the healthcare system. 00:16:26.572 --> 00:16:32.188 That a lot of things were not being covered for disabled folks 00:16:33.530 --> 00:16:35.304 that should be. 00:16:35.814 --> 00:16:44.108 And so, there was a series of lawsuits that were brought against 00:16:44.108 --> 00:16:50.238 the state of Oregon, that basically said that, "You couldn't discriminate 00:16:50.238 --> 00:16:56.421 against disabled people and not provide them with healthcare, 00:16:56.659 --> 00:16:58.383 based on their disability." 00:16:58.443 --> 00:17:00.830 That you couldn't sort of say, 00:17:00.830 --> 00:17:05.924 "Well, this person isn't going to get very much bang for their buck, 00:17:05.924 --> 00:17:09.356 they're not gonna end up being healthy anyway, 'cause they're still going 00:17:09.356 --> 00:17:13.356 to be disabled, so we're not going to give them this treatment option." 00:17:13.445 --> 00:17:20.356 Right? And so that was a big win within bioethics 00:17:20.356 --> 00:17:23.568 that was a direct result of the ADA. 00:17:24.560 --> 00:17:29.047 More recently, we've had a similar thing pop up 00:17:30.349 --> 00:17:34.349 because of the COVID-19 pandemic. 00:17:35.288 --> 00:17:43.770 Specifically, there are what are called "Emergency Healthcare Protocols" 00:17:44.099 --> 00:17:53.157 that are being developed for hospital systems and states that anticipate 00:17:53.455 --> 00:18:03.293 needing more intensive care unit beds, ventilators and so on and so forth, 00:18:03.465 --> 00:18:05.164 that aren't actually available. 00:18:05.195 --> 00:18:09.338 And so we need some way of figuring out who gets the ventilator, 00:18:09.367 --> 00:18:11.530 who gets the Intensive Care Unit bed, 00:18:12.057 --> 00:18:18.857 and so on and so forth, as the pandemic increases and goes o 00:18:19.794 --> 00:18:25.681 And so there was some protocols that were developed 00:18:25.976 --> 00:18:29.047 that were very discriminatory against disabled people. 00:18:29.776 --> 00:18:36.603 There was one in Alabama specifically, that said that anybody 00:18:36.603 --> 00:18:41.116 with an intellectual disability or with dementia was going to be 00:18:41.912 --> 00:18:50.257 deprioritized from getting these life- saving resources if they got COVID-19. 00:18:51.321 --> 00:18:57.716 And there was one in Washington state, that was pretty discriminatory against 00:18:58.535 --> 00:19:07.912 disabled folks and said that if you had a disability 00:19:08.348 --> 00:19:15.123 that meant that even after treatment you are still going to be disabled, 00:19:16.320 --> 00:19:22.195 that you would be deprioritized from getting the life-saving, life support 00:19:22.485 --> 00:19:24.205 treatment for COVID-19. 00:19:24.361 --> 00:19:28.481 So there was a variety of these all over the United States 00:19:29.934 --> 00:19:36.049 that were really problematic and that explicitly were discriminating 00:19:36.049 --> 00:19:40.412 against disabled people when it came to getting treatment for COVID 00:19:41.515 --> 00:19:49.838 and so in response, there were some folks from protection and advocacy agencies, 00:19:49.838 --> 00:19:54.266 which are sort of these-- Disability Rights California is one, 00:19:54.955 --> 00:20:00.895 and each state has protection and advocacy agencies that are federally funded, 00:20:01.202 --> 00:20:05.760 non-profit law firms that protect the rights of disabled people and so they 00:20:05.760 --> 00:20:14.053 sued these states and these hospital systems and got the federal government to 00:20:14.595 --> 00:20:22.575 provide guidelines for treatment ration protocols that basically say 00:20:22.951 --> 00:20:26.024 that you can't discriminate against disabled people in this way. 00:20:26.613 --> 00:20:34.215 That the only time that you can withhold treatment for COVID-19 is if there is 00:20:34.215 --> 00:20:40.406 sort of a very clear way in which the disability means that person would not 00:20:40.406 --> 00:20:45.356 benefit from the treatment, that, you know they have the kind of disability 00:20:45.967 --> 00:20:50.527 that would make it very, very unlikely that they would survive the virus 00:20:50.527 --> 00:20:58.017 even with some kind of ventilator or intensive care situation. 00:20:58.847 --> 00:21:03.458 And so, that's of course very different because something like needing 00:21:03.458 --> 00:21:09.472 an assistive device like a wheelchair or needing help dressing and bathing 00:21:09.714 --> 00:21:17.962 or having these things that would've meant that people would be rationed out 00:21:17.962 --> 00:21:21.490 under some of these protocols have nothing to do with whether or not 00:21:28.432 --> 00:21:42.011 So of course this is a really good thing that these protocols were changed because 00:21:43.216 --> 00:21:47.216 there were a lot of them that would have rationed people out 00:21:47.308 --> 00:21:51.674 for reasons that had nothing to do with whether or not they'll survive 00:21:51.674 --> 00:21:53.632 the virus with treatment, Right? 00:21:53.648 --> 00:21:59.198 So whether you use a wheelchair, or need a personal attendant for things 00:21:59.198 --> 00:22:01.343 like dressing and bathing, whether or not 00:22:01.343 --> 00:22:04.533 you have an intellectual disability 00:22:04.533 --> 00:22:11.444 These are reasons that were being used to deny people treatment for COVID-19 that 00:22:11.444 --> 00:22:16.203 have nothing to do with whether or not they would survive the disease. So, 00:22:17.327 --> 00:22:24.375 These advocacy efforts that were based on the American with Disabilities Ac 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 00:22:31.728 --> 00:22:34.589 literally saved peoples lives presumably. 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 00:22:46.060 --> 00:22:53.335 made an impact, but of course that isn't the only story. 00:22:53.755 --> 00:22:56.167 There are lots of ways in which 00:22:57.537 --> 00:23:06.916 bioethics can and has been discriminatory towards disabled people in ways that isn't 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 00:23:13.531 --> 00:23:16.597 it's written and the kinds of problems it was designed to solve. 00:23:17.474 --> 00:23:27.393 For instance, there is a lot of controversy over the development of 00:23:28.535 --> 00:23:30.834 different reproductive technologies 00:23:31.496 --> 00:23:37.742 that are designed to prevent the birth of disabled children. 00:23:38.659 --> 00:23:43.969 With intellectual disabilities, with down syndrome, 00:23:44.224 --> 00:23:47.344 with disabilities like mine, dwarfism. 00:23:48.275 --> 00:23:54.736 with disabilities like certain kinds of genetically linked deafness, and so on. 00:23:55.487 --> 00:24:00.000 And so we have an entire industry aimed 00:24:00.078 --> 00:24:04.078 at genetic testing for these kind of 00:24:04.371 --> 00:24:08.901 disabilities and the prevention of the 00:24:08.901 --> 00:24:10.194 birth of children 00:24:10.194 --> 00:24:11.777 with these disabilities with 00:24:12.550 --> 00:24:16.550 selective abortion or, now, selective implantation, 00:24:16.943 --> 00:24:20.167 which is when you test embryos 00:24:20.167 --> 00:24:21.857 and then pick the one that you want 00:24:22.385 --> 00:24:24.476 to give birth to. 00:24:25.034 --> 00:24:27.038 And then coming down the pipeline 00:24:27.038 --> 00:24:31.251 is CRISPR, which will be a technology 00:24:31.868 --> 00:24:35.419 that doesn't select a particular embryo 00:24:35.419 --> 00:24:37.747 but rather modifies the embryo itself. 00:24:39.213 --> 00:24:42.052 It sort of-- what's sometimes referred to 00:24:42.052 --> 00:24:44.245 as gene editing or genetic engineering. 00:24:45.204 --> 00:24:47.580 And that isn't a reality yet, but 00:24:48.137 --> 00:24:50.589 scientists are certainly working toward 00:24:51.684 --> 00:24:53.885 the use of that technology to prevent 00:24:53.885 --> 00:24:54.849 disability. 00:24:55.135 --> 00:24:59.595 Now it's something that of course makes 00:24:59.595 --> 00:25:01.521 a lot of people with these disabilities 00:25:02.050 --> 00:25:05.348 very uncomfortable because of 00:25:05.348 --> 00:25:09.068 the message that it might send, right? 00:25:09.068 --> 00:25:11.284 It might send the message that, 00:25:11.284 --> 00:25:13.567 "People like you aren't wanted 00:25:13.567 --> 00:25:15.505 in the world." Right? "we don't 00:25:15.505 --> 00:25:16.805 need more like you." 00:25:17.693 --> 00:25:22.555 And so, it is sorta of based on, largely, 00:25:23.722 --> 00:25:27.722 stigma around disability, around ideas 00:25:27.776 --> 00:25:30.306 about quality of life with disabled people 00:25:30.370 --> 00:25:32.420 that, "if you have a disability, you must 00:25:32.420 --> 00:25:35.150 be miserable, and so we must do everything 00:25:35.150 --> 00:25:37.690 we can to prevent more like you from 00:25:37.690 --> 00:25:40.193 coming into existence," and so on and so 00:25:40.193 --> 00:25:40.903 forth. 00:25:41.749 --> 00:25:45.749 Now, this is a real problem because, 00:25:45.984 --> 00:25:53.121 of course, it comes into conflict with 00:25:53.264 --> 00:25:55.499 values a lot of people hold around 00:25:55.499 --> 00:25:58.499 reproductive liberty, around women being 00:25:58.499 --> 00:26:00.515 able to make choices for themselves 00:26:00.515 --> 00:26:03.646 about their own bodies, and about their 00:26:03.646 --> 00:26:06.919 own lives, and so on and so forth. 00:26:07.763 --> 00:26:13.250 And so, this has created a tension between 00:26:14.397 --> 00:26:18.994 disability bioethics and other kinds of 00:26:19.618 --> 00:26:23.618 progressive groups that are wanting to 00:26:24.774 --> 00:26:28.336 promote freedom and justice for everybody. 00:26:28.549 --> 00:26:31.053 And so the ADA, you know, isn't designed 00:26:31.053 --> 00:26:32.823 to handle something like this because 00:26:32.823 --> 00:26:36.023 it's not about overt discrimination 00:26:36.023 --> 00:26:41.900 against people, but rather it's about 00:26:41.900 --> 00:26:45.900 attitudes about beliefs, about disability, 00:26:45.900 --> 00:26:47.807 that drive personal decisions. 00:26:49.043 --> 00:26:53.255 And so it's really really hard to address 00:26:53.255 --> 00:26:57.866 this as a policy problem because you know 00:26:57.875 --> 00:27:03.575 people aren't going to be very keen on 00:27:03.575 --> 00:27:06.975 restricting the kind of decisions women 00:27:06.975 --> 00:27:10.975 and families can make about reproduction. 00:27:11.869 --> 00:27:14.428 But at the same time, we want to promote 00:27:14.943 --> 00:27:17.893 good beliefs, and true beliefs, and good 00:27:17.893 --> 00:27:20.619 attitudes about disability, and the ways 00:27:20.619 --> 00:27:22.597 in which it contributes to the world, 00:27:22.729 --> 00:27:25.037 in the ways in which disabilities form 00:27:25.037 --> 00:27:26.754 a diversity that's important that we 00:27:26.754 --> 00:27:28.334 don't want to eliminate. 00:27:28.462 --> 00:27:34.935 And so that's, I think, a task for folks 00:27:34.935 --> 00:27:37.452 like myself in bioethics that are writing 00:27:37.452 --> 00:27:39.973 about these issues, that are trying to 00:27:40.011 --> 00:27:45.453 make arguments that are able to walk this 00:27:45.453 --> 00:27:48.556 very thin line between saying, 00:27:48.556 --> 00:27:52.743 "Okay, you know disability is the kind of 00:27:52.743 --> 00:27:58.974 thing that is not a horrible life sentence 00:27:58.974 --> 00:28:02.000 of misery," and so we don't want to make 00:28:02.000 --> 00:28:06.106 that assumption and we don't want to base 00:28:07.122 --> 00:28:09.603 the technologies that we develop or the 00:28:09.603 --> 00:28:12.168 decisions that we make on that assumption. 00:28:12.402 --> 00:28:15.225 But at the same time, we don't want to 00:28:15.225 --> 00:28:17.654 tell people what they can and can't do 00:28:17.654 --> 00:28:18.901 with their bodies. 00:28:19.502 --> 00:28:23.502 I think that, if I were to pick one thing 00:28:23.592 --> 00:28:28.352 to change, to try to give people with 00:28:28.352 --> 00:28:32.352 disabilities more access, and to remove 00:28:32.352 --> 00:28:36.352 barriers to a life of flourishing 00:28:36.352 --> 00:28:38.931 and opportunity for disabled people. 00:28:40.068 --> 00:28:50.474 I think I would go back to my birth story, 00:28:50.474 --> 00:28:52.196 my origin story if you will. 00:28:53.499 --> 00:28:58.790 When I was born, the doctor that delivered 00:28:58.790 --> 00:29:04.580 me looked at my body and he had never 00:29:04.580 --> 00:29:07.334 seen somebody with my kind of Dwarfism 00:29:07.334 --> 00:29:09.432 before, and didn't know much about it, 00:29:09.622 --> 00:29:11.218 and he told my parents, 00:29:13.154 --> 00:29:16.323 "he's not gonna do much, he's not going to be 00:29:16.323 --> 00:29:18.087 able to walk, he's not gonna be able 00:29:18.087 --> 00:29:20.025 able to walk, he's not gonna be able 00:29:20.025 --> 00:29:22.017 school," and so on and so forth. 00:29:22.700 --> 00:29:25.134 "You should place him in a 00:29:25.217 --> 00:29:27.144 state institution and 00:29:27.819 --> 00:29:30.048 go about your lives, forget about him." 00:29:31.091 --> 00:29:33.299 And they didn't do that, obviously. 00:29:33.299 --> 00:29:34.609 They chose not to do that. 00:29:34.609 --> 00:29:36.510 They took me home, they raised me 00:29:36.640 --> 00:29:39.479 like their kid because I was their kid. 00:29:40.484 --> 00:29:46.377 And so I think a lot about how different 00:29:46.674 --> 00:29:49.518 my life would be if I had been 00:29:49.518 --> 00:29:52.045 institutionalized from birth, as that 00:29:52.045 --> 00:29:53.649 doctor recommended. 00:29:55.219 --> 00:29:58.059 And then I think about how these 00:29:58.059 --> 00:29:59.812 And then I think about how these 00:30:00.951 --> 00:30:05.570 That when I was-- before I entered 00:30:05.570 --> 00:30:09.570 academia full-time, I worked as an 00:30:09.570 --> 00:30:13.570 advocate for a protection and advocacy 00:30:13.570 --> 00:30:16.740 agency in the state of Texas, where they 00:30:16.740 --> 00:30:18.270 have what are called, 00:30:19.834 --> 00:30:22.706 "state supported living centers," 00:30:23.176 --> 00:30:26.204 which are-- sort of a euphemism for 00:30:26.204 --> 00:30:28.484 state institutions where they warehouse 00:30:28.484 --> 00:30:31.356 people with intellectual disabilities and 00:30:31.356 --> 00:30:33.801 psychiatric disabilities of various kinds. 00:30:35.809 --> 00:30:37.807 Basically the kind of place that the 00:30:37.807 --> 00:30:40.100 doctor was recommending my parents 00:30:40.100 --> 00:30:43.770 to put me. They still exist, almost forty 00:30:43.770 --> 00:30:46.464 years later. This is not okay. 00:30:47.994 --> 00:30:50.334 And it's not just these kind of places 00:30:50.334 --> 00:30:52.073 that are really problematic. 00:30:53.082 --> 00:30:55.047 Nursing homes, there's lots of disabled 00:30:55.047 --> 00:30:56.777 people in nursing homes. 00:30:56.959 --> 00:30:59.262 Even some group home systems 00:30:59.830 --> 00:31:03.830 that are corporate, that are designed to 00:31:03.830 --> 00:31:07.630 make money, and not to make sure that 00:31:07.630 --> 00:31:11.725 the people living there are actually living 00:31:11.725 --> 00:31:13.422 good lives, right? 00:31:14.821 --> 00:31:18.821 This is a serious problem when you 00:31:19.536 --> 00:31:23.536 take people and you put them in 00:31:23.663 --> 00:31:26.782 a situation where they don't have control 00:31:26.782 --> 00:31:30.782 over the basic decisions of their life: 00:31:30.865 --> 00:31:33.684 what they eat for their meals, when they 00:31:33.684 --> 00:31:35.093 wake up, when they go to bed, 00:31:35.093 --> 00:31:37.881 how they spend their time, what they wear. 00:31:37.881 --> 00:31:41.881 When I was working as an advocate going 00:31:41.881 --> 00:31:43.951 in to the state institutions in Texas, 00:31:43.951 --> 00:31:46.547 I remember sitting in a meeting where it 00:31:46.547 --> 00:31:53.012 was discussed about my clients eating 00:31:53.012 --> 00:31:57.012 habits. How apart of his behavioral 00:31:57.012 --> 00:32:02.217 support plan was that they had his helper 00:32:03.977 --> 00:32:07.857 try to get him to take a sip of water 00:32:07.857 --> 00:32:10.837 between every bite of food that he took 00:32:11.820 --> 00:32:14.188 during meal time. I thought to myself, 00:32:14.188 --> 00:32:17.137 "how absurd!" This is a grown adult 00:32:17.137 --> 00:32:23.581 person that they are trying to micromanage 00:32:23.581 --> 00:32:25.968 down to the very last detail of his life 00:32:26.504 --> 00:32:29.880 and trying to control everything about 00:32:29.880 --> 00:32:33.880 what he does. That's horrific I can't 00:32:33.974 --> 00:32:36.563 imagine living under that kind of 00:32:36.563 --> 00:32:39.341 condition. Where not even being able to 00:32:39.341 --> 00:32:42.265 eat my meals in peace without someone 00:32:42.265 --> 00:32:44.179 telling me what to do and how to do it. 00:32:44.179 --> 00:32:48.483 Right? And so you know I think that this 00:32:48.483 --> 00:32:51.149 lack of control over basic decisions of 00:32:51.149 --> 00:32:54.434 your life is a real problem for a large 00:32:54.434 --> 00:32:58.361 number of disabled people still even you 00:32:58.361 --> 00:33:01.168 know 30 years after the passage of the 00:33:01.168 --> 00:33:04.468 ADA. So if there is one thing that I 00:33:04.468 --> 00:33:06.643 could sort of wave a magic wand and change 00:33:06.643 --> 00:33:09.101 it would be that. It would be developing 00:33:09.101 --> 00:33:11.771 systems where people are truly supported 00:33:12.542 --> 00:33:16.232 to be able to flourish as they are, but 00:33:16.232 --> 00:33:21.292 not controlled. Right? Not told what to 00:33:21.292 --> 00:33:23.303 do and when to do it every moment of their 00:33:23.303 --> 00:33:25.389 lives. Where they can make their own 00:33:25.389 --> 00:33:28.801 decisions and have agency over their own 00:33:28.801 --> 00:33:34.661 lives. I think that's what is missing for a 00:33:34.661 --> 00:33:37.351 large number of disabled people still even 00:33:37.351 --> 00:33:40.051 after the ADA. And that we need to do 00:33:41.051 --> 00:33:44.395 something about that. I think that there 00:33:44.395 --> 00:33:46.015 is a few things that we can do. 00:33:46.015 --> 00:33:48.230 First, educate your self on the issues. 00:33:48.230 --> 00:33:50.655 Right? Educate your self on the issues 00:33:50.655 --> 00:33:53.340 beyond just how they effect you. Right? 00:33:53.340 --> 00:33:57.340 I think that within the disability 00:33:57.340 --> 00:34:01.540 movements there is sort of pockets of 00:34:01.540 --> 00:34:03.456 different people doing different things. 00:34:03.456 --> 00:34:05.636 And that's fine. But, I think we need to 00:34:05.636 --> 00:34:07.915 talk to each other more. We need to 00:34:07.915 --> 00:34:13.541 realize that disability issues go beyond 00:34:14.113 --> 00:34:17.763 our limited experience. Right? So we need 00:34:17.763 --> 00:34:21.763 to be aware of the ways in which 00:34:22.099 --> 00:34:24.973 disability disadvantages people 00:34:24.973 --> 00:34:27.159 differently. That the experience of 00:34:27.159 --> 00:34:29.761 disability is not an experience it's many 00:34:29.761 --> 00:34:32.830 experiences. And so, we need to listen to 00:34:32.830 --> 00:34:35.168 each other and hear from each other about 00:34:35.411 --> 00:34:38.961 the ways in which we are suffering and 00:34:38.961 --> 00:34:41.781 hurting. Because, of disability 00:34:41.781 --> 00:34:43.522 discrimination because it looks very 00:34:43.522 --> 00:34:46.251 different between different people. And so 00:34:46.710 --> 00:34:49.471 having a richer fuller understanding 00:34:49.802 --> 00:34:53.034 having a richer fuller understanding 00:34:53.382 --> 00:34:56.665 Then beyond that sort of talking to people 00:34:56.665 --> 00:35:00.665 about strategies that they have and learn from 00:35:00.665 --> 00:35:03.969 each other about you know maybe some 00:35:03.969 --> 00:35:07.969 strategy that works for you know the deaf 00:35:07.978 --> 00:35:11.238 community would work really well for the 00:35:11.238 --> 00:35:13.742 dwarf community and maybe we haven't talked 00:35:13.742 --> 00:35:17.742 dwarf community and maybe we haven't talked 00:35:17.742 --> 00:35:19.739 political strategies to try to get what 00:35:19.739 --> 00:35:23.369 we need in order to live well. And maybe 00:35:23.369 --> 00:35:27.369 we should. Right? So, educate ourselves 00:35:27.558 --> 00:35:30.164 about the struggle of others you know 00:35:30.164 --> 00:35:32.407 because it's important to know and then 00:35:32.407 --> 00:35:35.523 share information and share strategies on 00:35:35.677 --> 00:35:39.302 how to effectively advocate and come 00:35:39.302 --> 00:35:43.085 together and fight together. Right? If you 00:35:43.085 --> 00:35:48.129 show up for someone on issue A that they 00:35:48.129 --> 00:35:50.309 are having then they're more likely to show 00:35:50.326 --> 00:35:52.268 up for you on issue B that your having. 00:35:52.339 --> 00:35:55.879 And, so building solidary across the 00:35:55.879 --> 00:35:59.372 movement more effectively. Recognizing 00:35:59.663 --> 00:36:03.070 the ways in which other oppressions 00:36:03.070 --> 00:36:06.933 intersect with disability and change the 00:36:06.933 --> 00:36:10.253 nature of disability oppression. These 00:36:10.253 --> 00:36:13.806 would be my recommendations of what to do. 00:36:13.806 --> 00:36:16.826 Just basically raising your awareness 00:36:16.826 --> 00:36:19.936 of discrimination beyond just your own 00:36:19.936 --> 00:36:21.440 experience.