0:00:00.000,0:00:05.276 Hi, my name is Joseph Scamardo and I [br]am an assistant professor of philosophy 0:00:05.276,0:00:09.241 and associate Director of the I[br]nstitute of Public Affairs 0:00:09.241,0:00:11.449 at San Diego State University. 0:00:11.449,0:00:16.328 I specialize in philosophy [br]disability and bioethics 0:00:16.581,0:00:19.151 I also identify as disabled. 0:00:19.151,0:00:22.259 I have a spinal cord injury 0:00:22.259,0:00:25.424 as well as a rare kind of dwarfism, and so 0:00:25.424,0:00:28.567 you get two for the price of one with me. 0:00:28.809,0:00:35.887 So my first memory of discrimination was 0:00:36.589,0:00:40.589 well, it's hard to say 0:00:43.296,0:00:47.116 I have lots of memories as far as 0:00:47.116,0:00:51.773 the experience of stigma or bigotry 0:00:51.773,0:00:54.819 mostly around my dwarfism. 0:00:54.819,0:00:56.410 and so, you know 0:00:56.410,0:01:00.248 I have lot's of early memories around that 0:01:00.248,0:01:03.533 with children staring and laughing 0:01:03.533,0:01:07.765 and that sort of thing from a very young age. 0:01:10.104,0:01:13.498 Then as far as, sort of 0:01:13.498,0:01:15.493 a more systematic discrimination 0:01:15.493,0:01:17.430 that sort of excluded me from something 0:01:17.430,0:01:22.343 that I wanted to do. 0:01:22.343,0:01:25.849 I had a pretty good experience as a child, 0:01:25.849,0:01:31.055 mostly because my parents really did a lot 0:01:31.055,0:01:33.940 to make sure I was included. 0:01:33.940,0:01:37.254 I can remember being in boy scouts 0:01:37.254,0:01:39.157 and cub scouts when I was a kid 0:01:39.157,0:01:42.611 and my father, really doing a lot with me 0:01:42.611,0:01:47.682 to ensure my inclusion of my disability 0:01:48.509,0:01:50.699 You know going on camping trips with me 0:01:50.699,0:01:53.489 and sorts of acting as a [br]personal attendant 0:01:53.489,0:01:56.501 kind of thing to make sure that I was able 0:01:56.501,0:01:57.732 to go and participate 0:01:57.732,0:02:00.315 and that sort of thing 0:02:00.551,0:02:03.971 And so the first real experience 0:02:03.971,0:02:06.023 of exclusion that I can remember 0:02:06.023,0:02:07.799 happened when it was time 0:02:07.799,0:02:09.349 to go to high school. 0:02:09.349,0:02:10.988 I had gone to public schools 0:02:10.988,0:02:13.812 in my town up until the 8th grade 0:02:13.812,0:02:17.228 and then when it came to high school, 0:02:17.228,0:02:21.228 I was supposed to do the same 0:02:21.228,0:02:25.131 private religiously sort of oriented 0:02:25.131,0:02:27.837 school that my older siblings when to 0:02:27.837,0:02:30.300 and I took the entrance exam and even got 0:02:30.300,0:02:33.170 a small scholarship to go and everything 0:02:33.170,0:02:36.150 but it didn't have an elevator, 0:02:36.150,0:02:39.847 and so I used a motorized scooter 0:02:39.847,0:02:42.610 to get around, and it was 0:02:42.610,0:02:44.260 going to be impossible for me to 0:02:44.260,0:02:47.780 attend that school, because there was no 0:02:47.780,0:02:49.810 elevator. Now this was actually 0:02:49.810,0:02:51.960 after the passage of the ADA, 0:02:52.668,0:02:55.448 but because it was 0:02:55.448,0:02:58.288 a religiously oriented school, 0:02:58.288,0:03:00.058 it was exempt from the requirements 0:03:00.058,0:03:01.288 of the ADA. 0:03:01.288,0:03:05.248 And so, I didn't have any leverage with 0:03:05.248,0:03:06.696 that law. 0:03:06.696,0:03:09.746 To be able to get them 0:03:09.746,0:03:11.673 to make accommodations for me and so 0:03:11.673,0:03:12.610 I ended up going to the public school[br]in my town 0:03:14.548,0:03:16.473 which actually, personally, I was [br]pretty happy about anyway 0:03:17.473,0:03:19.713 because that's where all my [br]friends were going 0:03:20.049,0:03:24.049 But it still sort of clued me in 0:03:24.421,0:03:26.931 to the fact 0:03:27.013,0:03:29.353 not everything is accessible 0:03:29.573,0:03:32.723 not everything is designed for me and that 0:03:32.723,0:03:34.259 this was going to be something 0:03:34.259,0:03:35.869 I was gonna have to figure out 0:03:35.869,0:03:37.164 throughout my life. 0:03:38.242,0:03:43.732 As far as remembering the ADA 0:03:43.732,0:03:44.882 and sort of its passage 0:03:44.882,0:03:45.992 and that sort of thing, 0:03:45.992,0:03:48.466 I was pretty young when it was passed 0:03:48.472,0:03:51.249 I'm sometimes referred to as a part of the 0:03:51.249,0:03:53.213 ADA generation, which means that 0:03:54.723,0:03:57.500 I sort of grew up with thr ADA mostly 0:03:58.478,0:03:59.830 I was born in 1982 0:04:00.381,0:04:02.991 and so I was 8 or 9 years old when the ADA 0:04:02.996,0:04:06.499 passed, and so I don't really have 0:04:06.499,0:04:08.506 any kind of recollection of, "Aha!" 0:04:08.914,0:04:12.487 That's the moment that is passed. 0:04:12.505,0:04:16.171 And the recall of where I was at the time 0:04:16.171,0:04:17.226 or anything like this, 0:04:17.721,0:04:19.744 but I do remember my father explaining 0:04:19.744,0:04:23.842 it to me, around the time of my 0:04:24.461,0:04:25.686 start of high school. 0:04:26.666,0:04:28.276 When I experienced this with that 0:04:28.276,0:04:32.107 private catholic school, and you know 0:04:32.471,0:04:34.044 having that sort of systemic 0:04:34.798,0:04:39.298 discrimination experience and he explained 0:04:39.348,0:04:43.951 that public schools, and other kinds of 0:04:43.951,0:04:48.855 public places were accessible to me 0:04:48.855,0:04:51.697 because of the ADA and that there was 0:04:51.697,0:04:53.924 this law that said that things had to be 0:04:54.596,0:04:56.214 accessible to people 0:04:56.214,0:04:57.357 who use wheelchairs, and 0:04:57.357,0:05:00.215 motorized scooter like I did at the time 0:05:00.215,0:05:01.956 And so that was my first sort of 0:05:01.956,0:05:04.654 awareness of the ADA, as well as my first 0:05:04.654,0:05:07.040 awareness of discrimination, which is 0:05:07.790,0:05:08.870 kind of cool. I think? 0:05:08.870,0:05:11.536 Because it was neat to have 0:05:11.536,0:05:13.573 that experience of, "Okay, well 0:05:13.573,0:05:16.554 this is something that's [br]going to be a challenge for you, 0:05:16.913,0:05:20.130 and here's how you're protected, [br]and here's how you can do something 0:05:20.130,0:05:23.441 about it." [br]And so in a way, it was sort of, 0:05:24.129,0:05:26.144 my awakening into advocacy as well. 0:05:30.477,0:05:35.076 Now, as far as the difference that the [br]ADA has made in my life, 0:05:36.124,0:05:45.319 or the life of others, [br]I think that it's been, of course 0:05:45.579,0:05:52.065 an incredibly important law that has[br]opened up all sorts of oportunities 0:05:52.209,0:05:58.279 to people, everything from public[br]transportation, to be able to move around 0:05:58.279,0:06:06.519 your community, the homestead decision [br]is based on ADA, which says that people 0:06:06.519,0:06:10.436 need to be--when they need any kind of[br]long time care, 0:06:10.436,0:06:14.090 they need to be served in the least[br]restrictive environment, meaning that 0:06:14.090,0:06:18.504 you can't just institutionalize or[br]warehouse somebody because it's more 0:06:18.504,0:06:24.317 convenient for you, you need to make sure[br]that they're able to live in the community 0:06:24.317,0:06:28.519 or somewhere that is going to be best[br]for them. 0:06:31.580,0:06:39.140 What else did the ADA do? Just[br]the ability to you know, get an education, 0:06:39.462,0:06:45.175 the ability to get a job, all of these[br]things, for me and for others, 0:06:46.051,0:06:51.439 were sort of caused by the ADA and I can't[br]really imagine what it was like 0:06:52.500,0:06:54.367 prior to the ADA, honestly. 0:06:54.367,0:06:58.637 I mean, I can imagine it I guess, but[br]I'm sure glad that I didn't have to 0:06:58.637,0:06:59.508 experience it. 0:07:00.179,0:07:07.989 The ADA makes a difference in a wide range[br]of personal experiences 0:07:08.049,0:07:14.756 and also a wide range of sort of[br]disability politics issues. Right? 0:07:15.502,0:07:27.048 So, my personal experience that I think[br]most recently has been impacted by the ADA 0:07:28.187,0:07:38.086 has been just my ability to live an[br]independent life with my two kids. 0:07:38.919,0:07:44.430 I think prior to the ADA, it would've[br]been much harder to do that. 0:07:45.115,0:07:51.838 You know raising kids means that I have to[br]go into lots of different public spaces 0:07:52.097,0:07:58.354 and do different things that I might not[br]have been 'required' to do, if you will, 0:07:59.064,0:08:02.495 professionally, or just sort of[br]in everyday life, if I didn't have them. 0:08:02.495,0:08:07.517 So going to the zoo, or going to the[br]grocery store, for that last minute item 0:08:07.517,0:08:16.315 or you know, just whatever it might be,[br]I think that, you know-- 0:08:16.733,0:08:20.122 opening up the daycare centers, and so on[br]and so forth. 0:08:20.122,0:08:24.122 The ADA sort of opened all of that up to[br]me, as a wheelchair user 0:08:24.139,0:08:31.470 and so, that's where it's made a big[br]personal impact in my life recently. 0:08:33.410,0:08:39.971 Now, I think that the one thing that[br]I can sort of speak to, professionally, 0:08:39.971,0:08:49.711 about the ADA and its impact or[br]lack of impact is probably, two-fold: 0:08:49.711,0:09:00.417 One, is the ways in which my privilege[br]as a physically disabled-- 0:09:01.159,0:09:04.394 there's a disability hierarchy of course,[br]and so physical disability 0:09:04.394,0:09:10.715 is usually at the top of that hierarchy,[br]with psychiatric disabilities 0:09:10.715,0:09:13.104 and intellectual developmental[br]disabilities, 0:09:13.104,0:09:15.064 are sort of lower down on the hierarchy. 0:09:15.609,0:09:22.426 And so, as a physically disabled,[br]cisgender, heterosexual white guy, 0:09:22.988,0:09:27.834 I've benefited a lot more from the ADA[br]than lots of other people 0:09:29.357,0:09:32.226 that don't have those kinds of privileges. 0:09:33.417,0:09:40.235 I think for instance about how the ADA[br]is designed, really 0:09:40.254,0:09:43.815 to promote what you'd think of[br]as equality of opportunity, 0:09:45.118,0:09:50.651 meaning that everybody has an equal[br]opportunity to compete within sort of the 0:09:51.065,0:10:01.731 economic life of the United States, and[br]so, it allows you to enter into the 0:10:01.731,0:10:05.245 workforce and enter into the educational[br]system and so on and so forth 0:10:05.245,0:10:06.350 then compete. 0:10:06.350,0:10:12.380 But what it doesn't do is it doesn't[br]address any of the other advantages 0:10:12.380,0:10:21.119 or disadvantages that intersect with[br]ableism. So that's sort of something 0:10:21.119,0:10:25.119 that is I think, a real problem, with[br]the ADA. 0:10:25.918,0:10:29.918 I'm a well-educated person, I have a[br]master's degree and a Ph.D. 0:10:31.757,0:10:38.874 and that, I don't think would've been[br]available to me as easily as it was 0:10:39.621,0:10:43.621 if I didn't have these other privileges[br]that I do have, 0:10:44.339,0:10:48.119 that the ADA doesn't do anything[br]to address, it just sort of treats 0:10:48.248,0:10:52.700 all disabled people as if they were[br]the same, and as if the only thing 0:10:52.700,0:10:56.700 they have to deal with is structural[br]ableism, and that's just not true, right? 0:10:58.333,0:11:06.704 I think another thing about disability[br]that the ADA doesn't address 0:11:08.118,0:11:19.088 is economics, in that, I think that[br]despite the ability to compete, 0:11:20.286,0:11:27.310 a lot of disabled people still live in[br]extreme poverty, because of other 0:11:27.310,0:11:30.750 things that make it impossible for them[br]to compete, 0:11:30.750,0:11:32.670 other than just their disability. 0:11:34.544,0:11:43.089 And so, the real sad part to me about that[br]is you look at other systems 0:11:43.089,0:11:47.089 that are designed to help disabled people[br]get out of poverty, 0:11:47.089,0:11:56.392 and even they don't recognize the way that[br]privilege operates in these contexts. 0:11:56.598,0:12:01.368 So, for instance,[br]the vocational rehab system. 0:12:02.039,0:12:06.039 I've benefited greatly from the vocational[br]rehab system so I don't want to just 0:12:06.221,0:12:08.176 sit here and talk smack on it, right? 0:12:09.397,0:12:15.879 The vocational rehab system has helped me[br]get a van that I could drive, 0:12:16.921,0:12:18.708 so I could get back and forth from 0:12:21.022,0:12:22.022 my place of employment, from school,[br]which was huge, right? 0:12:24.336,0:12:28.771 But the only reason why I had access[br]to that van was: 0:12:28.774,0:12:34.209 A. Because I could afford the van itself,[br]which not a lot of disabled people can do 0:12:34.223,0:12:37.912 especially if they aren't[br]working yet and 0:12:37.912,0:12:43.562 B. Because the VOC rehab counselor[br]thought 0:12:43.562,0:12:45.961 that I was worth the investment right? 0:12:46.594,0:12:55.162 Someone who didn't have the advantages[br]that I had, as far as the kind of 0:12:55.162,0:13:04.902 disability that I have, my family's[br]resources and my skin color and gender and 0:13:04.902,0:13:09.832 all those things, it's very likely that[br]rehab counselor would've said, 0:13:09.832,0:13:11.524 "You cant take the bus," right? 0:13:12.058,0:13:14.901 "We're not going to invest all of[br]this money into helping 0:13:14.901,0:13:17.178 you learn how to drive." 0:13:17.477,0:13:21.116 Because they wouldn't have believed that[br]they would get this return on their 0:13:21.116,0:13:26.400 investment that the person would be able[br]to get a well paying job, 0:13:26.948,0:13:30.948 and so on and so forth,[br]and so, I think that that's also 0:13:30.992,0:13:36.182 a big issue that the ADA doesn't address,[br]is this kind of intersectionality 0:13:36.182,0:13:43.363 that gives some disabled people[br]advantages within even the system 0:13:44.482,0:13:50.717 that is designed to help them, and other[br]people, of course, disadvantages, which is 0:13:50.741,0:13:52.136 a real issue. 0:13:54.727,0:14:01.618 Now, as far as my area of expertise,[br]Bioethics, there's definitely been some 0:14:01.618,0:14:06.268 ways in which the ADA has helped greatly,[br]and other ways 0:14:06.268,0:14:10.268 in which it hasn't really done much. 0:14:11.104,0:14:15.104 So I'll start with the positivity, right?[br]We'll start with the good news. 0:14:17.065,0:14:21.065 One way in which I think, I can 0:14:21.092,0:14:24.072 point to in a very concrete way in which 0:14:24.072,0:14:26.683 the ADA has helped is 0:14:26.683,0:14:29.807 when it comes to healthcare rationing so, 0:14:31.253,0:14:36.209 The issue of healthcare in the United[br]States of course is a very hot button 0:14:36.209,0:14:47.639 topic and it's hot because there is sort[br]of perceived lack of resources-- 0:14:47.755,0:14:48.635 There's more need 0:14:49.003,0:14:51.679 than there is supply for healthcare. 0:14:52.024,0:15:00.833 And so, when we talk about expanding[br]healthcare to a larger number of people, 0:15:01.991,0:15:10.350 without also expanding the resources that[br]are being devoted to healthcare, 0:15:11.135,0:15:15.135 then that's gonna be a real problem,[br]because some people aren't going to get 0:15:16.219,0:15:18.329 as much as they need, right? 0:15:18.329,0:15:21.605 You're going to have to sort of budget it,[br]if you will. 0:15:22.119,0:15:26.958 Or in the terms of bioethics,[br]ration healthcare. 0:15:28.310,0:15:35.342 Now this proved to be an issue because 0:15:37.812,0:15:45.195 when it was done on smaller scale,[br]for instance the state of Oregon, 0:15:46.510,0:15:50.190 after the passage of the ADA--[br]I'm not sure exactly on the timeline, 0:15:50.190,0:15:58.911 I'm not a historian--but the state of[br]Oregon expanded their publicly provided 0:15:59.350,0:16:06.713 healthcare to a larger number of people,[br]and as they did that, they needed to 0:16:07.233,0:16:13.460 make sure that they had a way of[br]prioritizing what was covered 0:16:13.460,0:16:14.840 and what was not covered. 0:16:14.840,0:16:18.217 And so, as they did this, 0:16:19.290,0:16:22.930 it became apparent that a lot of[br]disabled people 0:16:22.930,0:16:25.905 were being rationed out of[br]the healthcare system. 0:16:26.572,0:16:32.188 That a lot of things were not being[br]covered for disabled folks 0:16:33.530,0:16:35.304 that should be. 0:16:35.814,0:16:44.108 And so, there was a series of lawsuits[br]that were brought against 0:16:44.108,0:16:50.238 the state of Oregon, that basically[br]said that, "You couldn't discriminate 0:16:50.238,0:16:56.421 against disabled people and not[br]provide them with healthcare, 0:16:56.659,0:16:58.383 based on their disability." 0:16:58.443,0:17:00.830 That you couldn't sort of say, 0:17:00.830,0:17:05.924 "Well, this person isn't going to get[br]very much bang for their buck, 0:17:05.924,0:17:09.356 they're not gonna end up being healthy[br]anyway, 'cause they're still going 0:17:09.356,0:17:13.356 to be disabled, so we're not going to give[br]them this treatment option." 0:17:13.445,0:17:20.356 Right? And so that was a big win[br]within bioethics 0:17:20.356,0:17:23.568 that was a direct result of the ADA. 0:17:24.560,0:17:29.047 More recently,[br]we've had a similar thing pop up 0:17:30.349,0:17:34.349 because of the COVID-19 pandemic. 0:17:35.288,0:17:43.770 Specifically, there are what are called[br]"Emergency Healthcare Protocols" 0:17:44.099,0:17:53.157 that are being developed for hospital[br]systems and states that anticipate 0:17:53.455,0:18:03.293 needing more intensive care unit beds,[br]ventilators and so on and so forth, 0:18:03.465,0:18:05.164 that aren't actually available. 0:18:05.195,0:18:09.338 And so we need some way of figuring out[br]who gets the ventilator, 0:18:09.367,0:18:11.530 who gets the Intensive Care Unit bed, 0:18:12.057,0:18:18.857 and so on and so forth,[br]as the pandemic increases and goes o 0:18:19.794,0:18:25.681 And so there was some[br]protocols that were developed 0:18:25.976,0:18:29.047 that were very discriminatory[br]against disabled people. 0:18:29.776,0:18:36.603 There was one in Alabama specifically,[br]that said that anybody 0:18:36.603,0:18:41.116 with an intellectual disability[br]or with dementia was going to be 0:18:41.912,0:18:50.257 deprioritized from getting these life-[br]saving resources if they got COVID-19. 0:18:51.321,0:18:57.716 And there was one in Washington state,[br]that was pretty discriminatory against 0:18:58.535,0:19:07.912 disabled folks and said that[br]if you had a disability 0:19:08.348,0:19:15.123 that meant that even after treatment[br]you are still going to be disabled, 0:19:16.320,0:19:22.195 that you would be deprioritized from[br]getting the life-saving, life support 0:19:22.485,0:19:24.205 treatment for COVID-19. 0:19:24.361,0:19:28.481 So there was a variety of these all over[br]the United States 0:19:29.934,0:19:36.049 that were really problematic and[br]that explicitly were discriminating 0:19:36.049,0:19:40.412 against disabled people when it came to[br]getting treatment for COVID 0:19:41.515,0:19:49.838 and so in response, there were some folks[br]from protection and advocacy agencies, 0:19:49.838,0:19:54.266 which are sort of these--[br]Disability Rights California is one, 0:19:54.955,0:20:00.895 and each state has protection and advocacy[br]agencies that are federally funded, 0:20:01.202,0:20:05.760 non-profit law firms that protect the[br]rights of disabled people and so they 0:20:05.760,0:20:14.053 sued these states and these hospital[br]systems and got the federal government to 0:20:14.595,0:20:22.575 provide guidelines for treatment ration[br]protocols that basically say 0:20:22.951,0:20:26.024 that you can't discriminate against[br]disabled people in this way. 0:20:26.613,0:20:34.215 That the only time that you can withhold[br]treatment for COVID-19 is if there is 0:20:34.215,0:20:40.406 sort of a very clear way in which the[br]disability means that person would not 0:20:40.406,0:20:45.356 benefit from the treatment, that, you know[br]they have the kind of disability 0:20:45.967,0:20:50.527 that would make it very, very unlikely[br]that they would survive the virus 0:20:50.527,0:20:58.017 even with some kind of ventilator or[br]intensive care situation. 0:20:58.847,0:21:03.458 And so, that's of course very different[br]because something like needing 0:21:03.458,0:21:09.472 an assistive device like a wheelchair or[br]needing help dressing and bathing 0:21:09.714,0:21:17.962 or having these things that would've[br]meant that people would be rationed out 0:21:17.962,0:21:21.490 under some of these protocols have[br]nothing to do with whether or not 0:21:28.432,0:21:42.011 So of course this is a really good thing[br]that these protocols were changed because 0:21:43.216,0:21:47.216 there were a lot of them that would have[br]rationed people out 0:21:47.308,0:21:51.674 for reasons that had nothing to do with[br]whether or not they'll survive 0:21:51.674,0:21:53.632 the virus with treatment, Right? 0:21:53.648,0:21:59.198 So whether you use a wheelchair,[br]or need a personal attendant for things 0:21:59.198,0:22:01.343 like dressing and bathing, whether or not 0:22:01.343,0:22:04.533 you have an intellectual disability 0:22:04.533,0:22:11.444 These are reasons that were being used to[br]deny people treatment for COVID-19 that 0:22:11.444,0:22:16.203 have nothing to do with whether or not[br]they would survive the disease. So, 0:22:17.327,0:22:24.375 These advocacy efforts that were based on[br]the American with Disabilities Ac 0:22:25.678,0:22:31.728 sort of made that illegal to do, which[br]is of course a really important thing it's 0:22:31.728,0:22:34.589 literally saved peoples lives presumably. 0:22:36.806,0:22:45.986 So thats the good news as far as my field[br]of work and the ways in which ADA has 0:22:46.060,0:22:53.335 made an impact, but of course that isn't[br]the only story. 0:22:53.755,0:22:56.167 There are lots of ways in which 0:22:57.537,0:23:06.916 bioethics can and has been discriminatory[br]towards disabled people in ways that isn't 0:23:07.537,0:23:12.551 addressed by the ADA and that can't really[br]be addressed by the ADA because of the way 0:23:13.531,0:23:16.597 it's written and the kinds of problems[br]it was designed to solve. 0:23:17.474,0:23:27.393 For instance, there is a lot of[br]controversy over the development of 0:23:28.535,0:23:30.834 different reproductive technologies 0:23:31.496,0:23:37.742 that are designed to[br]prevent the birth of disabled children. 0:23:38.659,0:23:43.969 With intellectual disabilities,[br]with down syndrome, 0:23:44.224,0:23:47.344 with disabilities like mine, dwarfism. 0:23:48.275,0:23:54.736 with disabilities like certain kinds of[br]genetically linked deafness, and so on. 0:23:55.487,0:24:00.000 And so we have an entire industry aimed 0:24:00.078,0:24:04.078 at genetic testing for these kind of 0:24:04.371,0:24:08.901 disabilities and the prevention of the 0:24:08.901,0:24:10.194 birth of children 0:24:10.194,0:24:11.777 with these disabilities with 0:24:12.550,0:24:16.550 selective abortion or, now,[br]selective implantation, 0:24:16.943,0:24:20.167 which is when you test embryos 0:24:20.167,0:24:21.857 and then pick the one that you want 0:24:22.385,0:24:24.476 to give birth to. 0:24:25.034,0:24:27.038 And then coming down the pipeline 0:24:27.038,0:24:31.251 is CRISPR, which will be a technology 0:24:31.868,0:24:35.419 that doesn't select a particular embryo 0:24:35.419,0:24:37.747 but rather modifies the embryo itself. 0:24:39.213,0:24:42.052 It sort of-- what's sometimes referred to 0:24:42.052,0:24:44.245 as gene editing or genetic engineering. 0:24:45.204,0:24:47.580 And that isn't a reality yet, but 0:24:48.137,0:24:50.589 scientists are certainly working toward 0:24:51.684,0:24:53.885 the use of that technology to prevent 0:24:53.885,0:24:54.849 disability. 0:24:55.135,0:24:59.595 Now it's something that of course makes 0:24:59.595,0:25:01.521 a lot of people with these disabilities 0:25:02.050,0:25:05.348 very uncomfortable because of 0:25:05.348,0:25:09.068 the message that it might send, right? 0:25:09.068,0:25:11.284 It might send the message that, 0:25:11.284,0:25:13.567 "People like you aren't wanted 0:25:13.567,0:25:15.505 in the world." Right? "we don't 0:25:15.505,0:25:16.805 need more like you." 0:25:17.693,0:25:22.555 And so, it is sorta of based on, largely, 0:25:23.722,0:25:27.722 stigma around disability, around ideas 0:25:27.776,0:25:30.306 about quality of life with disabled people 0:25:30.370,0:25:32.420 that, "if you have a disability, you must 0:25:32.420,0:25:35.150 be miserable, and so we must do everything 0:25:35.150,0:25:37.690 we can to prevent more like you from 0:25:37.690,0:25:40.193 coming into existence," and so on and so 0:25:40.193,0:25:40.903 forth. 0:25:41.749,0:25:45.749 Now, this is a real problem because, 0:25:45.984,0:25:53.121 of course, it comes into conflict with 0:25:53.264,0:25:55.499 values a lot of people hold around 0:25:55.499,0:25:58.499 reproductive liberty, around women being 0:25:58.499,0:26:00.515 able to make choices for themselves 0:26:00.515,0:26:03.646 about their own bodies, and about their 0:26:03.646,0:26:06.919 own lives, and so on and so forth. 0:26:07.763,0:26:13.250 And so, this has created a tension between 0:26:14.397,0:26:18.994 disability bioethics and other kinds of 0:26:19.618,0:26:23.618 progressive groups that are wanting to 0:26:24.774,0:26:28.336 promote freedom and justice for everybody. 0:26:28.549,0:26:31.053 And so the ADA, you know, isn't designed 0:26:31.053,0:26:32.823 to handle something like this because 0:26:32.823,0:26:36.023 it's not about overt discrimination 0:26:36.023,0:26:41.900 against people, but rather it's about 0:26:41.900,0:26:45.900 attitudes about beliefs, about disability, 0:26:45.900,0:26:47.807 that drive personal decisions. 0:26:49.043,0:26:53.255 And so it's really really hard to address 0:26:53.255,0:26:57.866 this as a policy problem because you know 0:26:57.875,0:27:03.575 people aren't going to be very keen on 0:27:03.575,0:27:06.975 restricting the kind of decisions women 0:27:06.975,0:27:10.975 and families can make about reproduction. 0:27:11.869,0:27:14.428 But at the same time, we want to promote 0:27:14.943,0:27:17.893 good beliefs, and true beliefs, and good 0:27:17.893,0:27:20.619 attitudes about disability, and the ways 0:27:20.619,0:27:22.597 in which it contributes to the world, 0:27:22.729,0:27:25.037 in the ways in which disabilities form 0:27:25.037,0:27:26.754 a diversity that's important that we 0:27:26.754,0:27:28.334 don't want to eliminate. 0:27:28.462,0:27:34.935 And so that's, I think, a task for folks 0:27:34.935,0:27:37.452 like myself in bioethics that are writing 0:27:37.452,0:27:39.973 about these issues, that are trying to 0:27:40.011,0:27:45.453 make arguments that are able to walk this 0:27:45.453,0:27:48.556 very thin line between saying, 0:27:48.556,0:27:52.743 "Okay, you know disability is the kind of 0:27:52.743,0:27:58.974 thing that is not a horrible life sentence 0:27:58.974,0:28:02.000 of misery," and so we don't want to make 0:28:02.000,0:28:06.106 that assumption and we don't want to base 0:28:07.122,0:28:09.603 the technologies that we develop or the 0:28:09.603,0:28:12.168 decisions that we make on that assumption. 0:28:12.402,0:28:15.225 But at the same time, we don't want to 0:28:15.225,0:28:17.654 tell people what they can and can't do 0:28:17.654,0:28:18.901 with their bodies. 0:28:19.502,0:28:23.502 I think that, if I were to pick one thing 0:28:23.592,0:28:28.352 to change, to try to give people with 0:28:28.352,0:28:32.352 disabilities more access, and to remove 0:28:32.352,0:28:36.352 barriers to a life of flourishing 0:28:36.352,0:28:38.931 and opportunity for disabled people. 0:28:40.068,0:28:50.474 I think I would go back to my birth story, 0:28:50.474,0:28:52.196 my origin story if you will. 0:28:53.499,0:28:58.790 When I was born, the doctor that delivered 0:28:58.790,0:29:04.580 me looked at my body and he had never 0:29:04.580,0:29:07.334 seen somebody with my kind of Dwarfism 0:29:07.334,0:29:09.432 before, and didn't know much about it, 0:29:09.622,0:29:11.218 and he told my parents, 0:29:13.154,0:29:16.323 "he's not gonna do much,[br]he's not going to be 0:29:16.323,0:29:18.087 able to walk, he's not gonna be able 0:29:18.087,0:29:20.025 able to walk, he's not gonna be able 0:29:20.025,0:29:22.017 school," and so on and so forth. 0:29:22.700,0:29:25.134 "You should place him in a 0:29:25.217,0:29:27.144 state institution and 0:29:27.819,0:29:30.048 go about your lives, forget about him." 0:29:31.091,0:29:33.299 And they didn't do that, obviously. 0:29:33.299,0:29:34.609 They chose not to do that. 0:29:34.609,0:29:36.510 They took me home, they raised me 0:29:36.640,0:29:39.479 like their kid because I was their kid. 0:29:40.484,0:29:46.377 And so I think a lot about how different 0:29:46.674,0:29:49.518 my life would be if I had been 0:29:49.518,0:29:52.045 institutionalized from birth, as that 0:29:52.045,0:29:53.649 doctor recommended. 0:29:55.219,0:29:58.059 And then I think about how these 0:29:58.059,0:29:59.812 And then I think about how these 0:30:00.951,0:30:05.570 That when I was-- before I entered 0:30:05.570,0:30:09.570 academia full-time, I worked as an 0:30:09.570,0:30:13.570 advocate for a protection and advocacy 0:30:13.570,0:30:16.740 agency in the state of Texas, where they 0:30:16.740,0:30:18.270 have what are called, 0:30:19.834,0:30:22.706 "state supported living centers," 0:30:23.176,0:30:26.204 which are-- sort of a euphemism for 0:30:26.204,0:30:28.484 state institutions where they warehouse 0:30:28.484,0:30:31.356 people with intellectual disabilities and 0:30:31.356,0:30:33.801 psychiatric disabilities of various kinds. 0:30:35.809,0:30:37.807 Basically the kind of place that the 0:30:37.807,0:30:40.100 doctor was recommending my parents 0:30:40.100,0:30:43.770 to put me. They still exist, almost forty 0:30:43.770,0:30:46.464 years later. This is not okay. 0:30:47.994,0:30:50.334 And it's not just these kind of places 0:30:50.334,0:30:52.073 that are really problematic. 0:30:53.082,0:30:55.047 Nursing homes, there's lots of disabled 0:30:55.047,0:30:56.777 people in nursing homes. 0:30:56.959,0:30:59.262 Even some group home systems 0:30:59.830,0:31:03.830 that are corporate, that are designed to 0:31:03.830,0:31:07.630 make money, and not to make sure that 0:31:07.630,0:31:11.725 the people living there are actually[br]living 0:31:11.725,0:31:13.422 good lives, right? 0:31:14.821,0:31:18.821 This is a serious problem when you 0:31:19.536,0:31:23.536 take people and you put them in 0:31:23.663,0:31:26.782 a situation where they don't have control 0:31:26.782,0:31:30.782 over the basic decisions of their life: 0:31:30.865,0:31:33.684 what they eat for their meals, when they 0:31:33.684,0:31:35.093 wake up, when they go to bed, 0:31:35.093,0:31:37.881 how they spend their time, what they wear. 0:31:37.881,0:31:41.881 When I was working as an advocate going 0:31:41.881,0:31:43.951 in to the state institutions in Texas, 0:31:43.951,0:31:46.547 I remember sitting in a meeting where it 0:31:46.547,0:31:53.012 was discussed about my clients eating 0:31:53.012,0:31:57.012 habits. How apart of his behavioral 0:31:57.012,0:32:02.217 support plan was that they had his helper 0:32:03.977,0:32:07.857 try to get him to take a sip of water 0:32:07.857,0:32:10.837 between every bite of food that he took 0:32:11.820,0:32:14.188 during meal time. I thought to myself, 0:32:14.188,0:32:17.137 "how absurd!" This is a grown adult 0:32:17.137,0:32:23.581 person that they are trying to micromanage 0:32:23.581,0:32:25.968 down to the very last detail of his life 0:32:26.504,0:32:29.880 and trying to control everything about 0:32:29.880,0:32:33.880 what he does. That's horrific I can't 0:32:33.974,0:32:36.563 imagine living under that kind of 0:32:36.563,0:32:39.341 condition. Where not even being able to 0:32:39.341,0:32:42.265 eat my meals in peace without someone 0:32:42.265,0:32:44.179 telling me what to do and how to do it. 0:32:44.179,0:32:48.483 Right? And so you know I think that this 0:32:48.483,0:32:51.149 lack of control over basic decisions of 0:32:51.149,0:32:54.434 your life is a real problem for a large 0:32:54.434,0:32:58.361 number of disabled people still even you 0:32:58.361,0:33:01.168 know 30 years after the passage of the 0:33:01.168,0:33:04.468 ADA. So if there is one thing that I 0:33:04.468,0:33:06.643 could sort of wave a magic wand and change 0:33:06.643,0:33:09.101 it would be that. It would be developing 0:33:09.101,0:33:11.771 systems where people are truly supported 0:33:12.542,0:33:16.232 to be able to flourish as they are, but 0:33:16.232,0:33:21.292 not controlled. Right? Not told what to 0:33:21.292,0:33:23.303 do and when to do it every moment of their 0:33:23.303,0:33:25.389 lives. Where they can make their own 0:33:25.389,0:33:28.801 decisions and have agency over their own 0:33:28.801,0:33:34.661 lives. I think that's what is[br]missing for a 0:33:34.661,0:33:37.351 large number of disabled people still even 0:33:37.351,0:33:40.051 after the ADA. And that we need to do 0:33:41.051,0:33:44.395 something about that. I think that there 0:33:44.395,0:33:46.015 is a few things that we can do. 0:33:46.015,0:33:48.230 First, educate your self on the issues. 0:33:48.230,0:33:50.655 Right? Educate your self on the issues 0:33:50.655,0:33:53.340 beyond just how they effect you. Right? 0:33:53.340,0:33:57.340 I think that within the disability 0:33:57.340,0:34:01.540 movements there is sort of pockets of 0:34:01.540,0:34:03.456 different people doing different things. 0:34:03.456,0:34:05.636 And that's fine. But, I think we need to 0:34:05.636,0:34:07.915 talk to each other more. We need to 0:34:07.915,0:34:13.541 realize that disability issues go beyond 0:34:14.113,0:34:17.763 our limited experience. Right? So we need 0:34:17.763,0:34:21.763 to be aware of the ways in which 0:34:22.099,0:34:24.973 disability disadvantages people 0:34:24.973,0:34:27.159 differently. That the experience of 0:34:27.159,0:34:29.761 disability is not an experience it's many 0:34:29.761,0:34:32.830 experiences. And so, we need to listen to 0:34:32.830,0:34:35.168 each other and hear from each other about 0:34:35.411,0:34:38.961 the ways in which we are suffering and 0:34:38.961,0:34:41.781 hurting. Because, of disability 0:34:41.781,0:34:43.522 discrimination because it looks very 0:34:43.522,0:34:46.251 different between different people. And so 0:34:46.710,0:34:49.471 having a richer fuller understanding 0:34:49.802,0:34:53.034 having a richer fuller understanding 0:34:53.382,0:34:56.665 Then beyond that sort of talking to people 0:34:56.665,0:35:00.665 about strategies that they have[br]and learn from 0:35:00.665,0:35:03.969 each other about you know maybe some 0:35:03.969,0:35:07.969 strategy that works for you know the deaf 0:35:07.978,0:35:11.238 community would work really well for the 0:35:11.238,0:35:13.742 dwarf community and maybe we[br]haven't talked 0:35:13.742,0:35:17.742 dwarf community and maybe we[br]haven't talked 0:35:17.742,0:35:19.739 political strategies to try to get what 0:35:19.739,0:35:23.369 we need in order to live well. And maybe 0:35:23.369,0:35:27.369 we should. Right? So, educate ourselves 0:35:27.558,0:35:30.164 about the struggle of others you know 0:35:30.164,0:35:32.407 because it's important to know and then 0:35:32.407,0:35:35.523 share information and share strategies on 0:35:35.677,0:35:39.302 how to effectively advocate and come 0:35:39.302,0:35:43.085 together and fight together. Right? If you 0:35:43.085,0:35:48.129 show up for someone on issue A that they 0:35:48.129,0:35:50.309 are having then they're[br]more likely to show 0:35:50.326,0:35:52.268 up for you on issue B that your having. 0:35:52.339,0:35:55.879 And, so building solidary across the 0:35:55.879,0:35:59.372 movement more effectively. Recognizing 0:35:59.663,0:36:03.070 the ways in which other oppressions 0:36:03.070,0:36:06.933 intersect with disability and change the 0:36:06.933,0:36:10.253 nature of disability oppression. These 0:36:10.253,0:36:13.806 would be my recommendations of what to do. 0:36:13.806,0:36:16.826 Just basically raising your awareness 0:36:16.826,0:36:19.936 of discrimination beyond just your own 0:36:19.936,0:36:21.440 experience.