0:00:00.000,0:00:05.276 Hi,my name is Joseph Scamardo and I am an [br]assistant professor of philosophy 0:00:05.276,0:00:09.241 and associate Director of the [br]Institute in Public Affairs 0:00:09.241,0:00:11.449 at San Diego State University 0:00:11.449,0:00:16.328 I specialized in philosophy of disability[br]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 lots 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 [br]very young age. 0:01:10.104,0:01:13.498 Then as far as, sort of 0:01:13.498,0:01:15.693 a more systematic discrimination 0:01:15.693,0:01:18.580 that sort of excluded me from something 0:01:18.580,0:01:22.343 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 that 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 that the inclusion[br]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 sort of acting as a 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 the public schools 0:02:10.988,0:02:13.812 in my town up until through 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 go to 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 went 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 0:03:09.746,0:03:13.746 to make accommodations for me 9:59:59.000,9:59:59.000 so I ended up going to the public school 9:59:59.000,9:59:59.000 in my town, which actually, personally, 9:59:59.000,9:59:59.000 I was pretty happy about anyway, 9:59:59.000,9:59:59.000 because that's where all my[br]friends were going. 9:59:59.000,9:59:59.000 But it still sort of clued me in 9:59:59.000,9:59:59.000 to the fact that... 9:59:59.000,9:59:59.000 not everything is accessible, 9:59:59.000,9:59:59.000 not everything is designed for me and that 9:59:59.000,9:59:59.000 this was going to be something 9:59:59.000,9:59:59.000 I was gonna have to figure out 9:59:59.000,9:59:59.000 throughout my life. 9:59:59.000,9:59:59.000 As far as remembering the ADA 9:59:59.000,9:59:59.000 and sort of its passage 9:59:59.000,9:59:59.000 and that sort of thing, 9:59:59.000,9:59:59.000 I was pretty young when it was passed, 9:59:59.000,9:59:59.000 I'm sometimes referred to as part of the 9:59:59.000,9:59:59.000 ADA generation, which means that 9:59:59.000,9:59:59.000 I sort of grew up with the ADA mostly, 9:59:59.000,9:59:59.000 I was born in 1982, 9:59:59.000,9:59:59.000 and so I was 8 or 9 years old when the ADA 9:59:59.000,9:59:59.000 passed, and so I don't really have 9:59:59.000,9:59:59.000 any kind of recollection of, "Aha!" 9:59:59.000,9:59:59.000 That's the moment that it passed. 9:59:59.000,9:59:59.000 And the recall of where I was at the time 9:59:59.000,9:59:59.000 or anything like this, 9:59:59.000,9:59:59.000 but I do remember my father explaining 9:59:59.000,9:59:59.000 it to me, around the time of my 9:59:59.000,9:59:59.000 start of high school. 9:59:59.000,9:59:59.000 When I experienced this with that 9:59:59.000,9:59:59.000 private catholic school, and you know 9:59:59.000,9:59:59.000 having that sort of systematic 9:59:59.000,9:59:59.000 discrimination experience it explained 9:59:59.000,9:59:59.000 that public schools, and other kinds of 9:59:59.000,9:59:59.000 public places were accessible to me 9:59:59.000,9:59:59.000 because of the ADA and that there was 9:59:59.000,9:59:59.000 this law that said that things had to be 9:59:59.000,9:59:59.000 accessible to people 9:59:59.000,9:59:59.000 who use wheelchairs, and 9:59:59.000,9:59:59.000 motorized scooters like I did at the time. 9:59:59.000,9:59:59.000 And so, that was my first sort of 9:59:59.000,9:59:59.000 awareness of the ADA, as well as my first 9:59:59.000,9:59:59.000 awareness of discrimination, which is 9:59:59.000,9:59:59.000 kind of cool. I think? 9:59:59.000,9:59:59.000 Because it was neat to have 9:59:59.000,9:59:59.000 that experience of, "Okay, well, 9:59:59.000,9:59:59.000 this is something that's[br]going to be a challenge for you, 9:59:59.000,9:59:59.000 and here's how you're protected,[br]and here's how you can do something 9:59:59.000,9:59:59.000 about it." [br]And so in a way, it was this sort of, 9:59:59.000,9:59:59.000 my awakening into advocacy as well. 9:59:59.000,9:59:59.000 Now, as far as the difference that the [br]ADA has made in my life, 9:59:59.000,9:59:59.000 or the life of others, [br]I think that it's been, of course 9:59:59.000,9:59:59.000 an incredibly important law that has [br]opened up all sorts of opportunities 9:59:59.000,9:59:59.000 to people, everything from public [br]transportation, to be able to move around 9:59:59.000,9:59:59.000 your community, the homestead decision[br]is based on ADA, which says that people 9:59:59.000,9:59:59.000 need to be--when they need any kind of [br]long time care, 9:59:59.000,9:59:59.000 they need to be served in the least [br]restrictive environment, meaning that 9:59:59.000,9:59:59.000 you can't just institutionalize or[br]warehouse somebody because it's more 9:59:59.000,9:59:59.000 convenient for you, you need to make sure[br]that they're able to live in the community 9:59:59.000,9:59:59.000 or somewhere that is going to be best [br]for them. 9:59:59.000,9:59:59.000 What else do the ADA do?[br]Just the ability to you know an education, 9:59:59.000,9:59:59.000 the ability to get a job, all of these[br]things, for me and for others, 9:59:59.000,9:59:59.000 were sort of caused by the ADA and I can't[br]really imagine what it was like 9:59:59.000,9:59:59.000 prior to the ADA, honestly. 9:59:59.000,9:59:59.000 I mean, I can imagine it I guess, but [br]I'm sure glad that I didn't have to 9:59:59.000,9:59:59.000 experience it. 9:59:59.000,9:59:59.000 The ADA makes a difference in a wide range[br]of personal experiences 9:59:59.000,9:59:59.000 and also a wide range of sort of [br]disability politics issues. Right? 9:59:59.000,9:59:59.000 So, my personal experience that I think [br]most recently has been impacted by the ADA 9:59:59.000,9:59:59.000 has been just my ability to live an [br]independent life with my two kids. 9:59:59.000,9:59:59.000 I think prior to the ADA, it would've [br]been much harder to do that. 9:59:59.000,9:59:59.000 You know raising kids means that I have to[br]into lots of different public spaces and 9:59:59.000,9:59:59.000 do different things that I might not have[br]been 'required' to do, if you will, 9:59:59.000,9:59:59.000 professionally, or just sort of[br]in everyday life, if I didn't have them. 9:59:59.000,9:59:59.000 So going to the zoo, or going to the[br]grocery store, for that last minute item 9:59:59.000,9:59:59.000 or you know, just whatever it might be, [br]I think that, you know-- 9:59:59.000,9:59:59.000 opening up the daycare centers, and so on[br]and so forth. 9:59:59.000,9:59:59.000 The ADA sort of opened all of that up to[br]me, as a wheelchair user 9:59:59.000,9:59:59.000 and so, that's where it's made a big [br]personal impact in my life recently. 9:59:59.000,9:59:59.000 Now, I think that the one thing that [br]I can sort of speak to, professionally, 9:59:59.000,9:59:59.000 about the ADA and its impact or [br]lack of impact is probably, two-fold: 9:59:59.000,9:59:59.000 One, is the ways in which my privilege [br]as a physically disabled-- 9:59:59.000,9:59:59.000 there's a disability hierarchy of course,[br]and so physical disability 9:59:59.000,9:59:59.000 is usually at the top of that hierarchy, [br]with psychiatric disabilities 9:59:59.000,9:59:59.000 and intellectual developmental [br]disabilities, 9:59:59.000,9:59:59.000 are sort of lower down on the hierarchy. 9:59:59.000,9:59:59.000 And so, as a physically disabled, [br]cisgender, heterosexual white guy, 9:59:59.000,9:59:59.000 I've benefited a lot more from the ADA [br]than lots of other people 9:59:59.000,9:59:59.000 that don't have those kinds of privileges. 9:59:59.000,9:59:59.000 I think for instance about how the ADA [br]is designed, really 9:59:59.000,9:59:59.000 to promote what you'd think of [br]as equality of opportunity, 9:59:59.000,9:59:59.000 meaning that everybody has an equal [br]opportunity to compete within sort of the 9:59:59.000,9:59:59.000 economic life of the United States, and [br]so, it allows you to enter into the 9:59:59.000,9:59:59.000 workforce and enter into the educational [br]system and so on and so forth 9:59:59.000,9:59:59.000 then compete. 9:59:59.000,9:59:59.000 But what it doesn't do is it doesn't[br]address any of the other advantages 9:59:59.000,9:59:59.000 or disadvantages that intersect with [br]ableism. So that's sort of something 9:59:59.000,9:59:59.000 that is I think, a real problem, with [br]the ADA. 9:59:59.000,9:59:59.000 I'm a well-educated person, I have a [br]master's degree and a Ph.D. 9:59:59.000,9:59:59.000 and that, I don't think would've been [br]available to me as easily as it was 9:59:59.000,9:59:59.000 if I didn't have these other privileges [br]that I do have, 9:59:59.000,9:59:59.000 that the ADA doesn't do anything[br]to address, it just sort of treats 9:59:59.000,9:59:59.000 all disabled people as if they were [br]the same, and as if the only thing 9:59:59.000,9:59:59.000 they have to deal with is structural [br]ableism, and that's just not true, right? 9:59:59.000,9:59:59.000 I think another thing about disability[br]that the ADA doesn't address 9:59:59.000,9:59:59.000 is economics, in that, I think that [br]despite the ability to compete, 9:59:59.000,9:59:59.000 a lot of disabled people still live in[br]extreme poverty, because of other 9:59:59.000,9:59:59.000 things that make it impossible for them [br]to compete, 9:59:59.000,9:59:59.000 other than just their disability. 9:59:59.000,9:59:59.000 And so, the real sad part to me about that[br]is you look at other systems 9:59:59.000,9:59:59.000 that are designed to help disabled people [br]get out of poverty, 9:59:59.000,9:59:59.000 and even they don't recognize the way that[br]privilege operates in these contexts. 9:59:59.000,9:59:59.000 So, for instance, [br]the vocational rehab system. 9:59:59.000,9:59:59.000 I've benefited greatly from the vocational[br]rehab system so I don't want to just 9:59:59.000,9:59:59.000 sit here and talk smack on it, right? 9:59:59.000,9:59:59.000 The vocational rehab system has helped me [br]get a van that I could drive, 9:59:59.000,9:59:59.000 so I could get back and forth from 9:59:59.000,9:59:59.000 my place of employment, from school,[br]which was huge, right? 9:59:59.000,9:59:59.000 But the only reason why I had access[br]to that van was: 9:59:59.000,9:59:59.000 A. Because I could afford the van itself,[br]which not a lot of disabled people can do, 9:59:59.000,9:59:59.000 especially if they aren't[br]working yet and 9:59:59.000,9:59:59.000 B. Because the VOC rehab counselor [br]thought 9:59:59.000,9:59:59.000 that I was worth the investment right? 9:59:59.000,9:59:59.000 Someone who didn't have the advantages[br]that I had, as far as the kind of 9:59:59.000,9:59:59.000 disability that I have, my family's [br]resources and my skin color and gender and 9:59:59.000,9:59:59.000 all those things, it's very likely that[br]rehab counselor would've said, 9:59:59.000,9:59:59.000 "You cant take the bus," right? 9:59:59.000,9:59:59.000 "We're not going to invest all of[br]this money into helping 9:59:59.000,9:59:59.000 you learn how to drive." 9:59:59.000,9:59:59.000 Because they wouldn't have believed that[br]they would get this return on their 9:59:59.000,9:59:59.000 investment that the person would be able [br]to get a well paying job, 9:59:59.000,9:59:59.000 and so on and so forth, [br]and so, I think that that's also 9:59:59.000,9:59:59.000 a big issue that the ADA doesn't address,[br]is this kind of intersectionality 9:59:59.000,9:59:59.000 that gives some disabled people [br]advantages within even the system 9:59:59.000,9:59:59.000 that is designed to help them, and other[br]people, of course, disadvantages, which is 9:59:59.000,9:59:59.000 a real issue. 9:59:59.000,9:59:59.000 Now, as far as my area of expertise, [br]Bioethics, there's definitely been some 9:59:59.000,9:59:59.000 ways in which the ADA has helped greatly,[br]and other ways 9:59:59.000,9:59:59.000 in which it hasn't really done much. 9:59:59.000,9:59:59.000 So I'll start with the positivity, right?[br]We'll start with the good news. 9:59:59.000,9:59:59.000 One way in which I think, I can point to in a very concrete way in which 9:59:59.000,9:59:59.000 has helped is when it comes to healthcare 9:59:59.000,9:59:59.000 The issue of healthcare in the United [br]States of course is a very hot button topic 9:59:59.000,9:59:59.000 and it's hot because there is a perceived[br]lack of resources--There's more need 9:59:59.000,9:59:59.000 than there is supply for healthcare. 9:59:59.000,9:59:59.000 And so, when we talk about expanding [br]healthcare to a larger number of people, 9:59:59.000,9:59:59.000 without also expanding the resources that[br]are being devoted to healthcare, 9:59:59.000,9:59:59.000 then that's gonna be a real problem, [br]because some people aren't going to get 9:59:59.000,9:59:59.000 as much as they need, right? 9:59:59.000,9:59:59.000 You're going to have to sort of budget it,[br]if you will. 9:59:59.000,9:59:59.000 Or in the terms of bioethics, [br]ration healthcare. 9:59:59.000,9:59:59.000 Now this proved to be an issue because 9:59:59.000,9:59:59.000 when it was done on smaller scale, [br]for instance the state of Oregon, 9:59:59.000,9:59:59.000 after the passage of the ADA--[br]I'm not sure exactly on the timeline, 9:59:59.000,9:59:59.000 I'm not a historian--but the state of[br]Oregon expanded their publicly provided 9:59:59.000,9:59:59.000 healthcare to a larger number of people,[br]and as they did that, they needed to 9:59:59.000,9:59:59.000 make sure that they had a way of[br]prioritizing what was covered 9:59:59.000,9:59:59.000 and what was not covered. 9:59:59.000,9:59:59.000 And so, as they did this, 9:59:59.000,9:59:59.000 it became apparent that a lot of [br]disabled people 9:59:59.000,9:59:59.000 were being rationed out of [br]the healthcare system. 9:59:59.000,9:59:59.000 That a lot of things were not being [br]covered for disabled folks 9:59:59.000,9:59:59.000 that should be. 9:59:59.000,9:59:59.000 And so, there was a series of lawsuits [br]that were brought against 9:59:59.000,9:59:59.000 the state of Oregon, that basically[br]said that, "You couldn't discriminate 9:59:59.000,9:59:59.000 against disabled people and not [br]provide them with healthcare, 9:59:59.000,9:59:59.000 based on their disability." 9:59:59.000,9:59:59.000 That you couldn't sort of say, 9:59:59.000,9:59:59.000 "Well, this person isn't going to get [br]very much bang for their buck, 9:59:59.000,9:59:59.000 they're not gonna end up being healthy[br]anyway, 'cause they're still going 9:59:59.000,9:59:59.000 to be disabled, so we're not going to give[br]them this treatment option." 9:59:59.000,9:59:59.000 Right? And so that was a big win [br]within bioethics 9:59:59.000,9:59:59.000 that was a direct result of the ADA. 9:59:59.000,9:59:59.000 More recently, [br]we've had a similar thing pop up 9:59:59.000,9:59:59.000 because of the COVID-19 pandemic. 9:59:59.000,9:59:59.000 Specifically, there are what are called[br]"Emergency Healthcare Protocols" 9:59:59.000,9:59:59.000 that are being developed for hospital [br]systems and states that anticipate 9:59:59.000,9:59:59.000 needing more intensive care unit beds,[br]ventilators and so on and so forth, 9:59:59.000,9:59:59.000 that aren't actually available. 9:59:59.000,9:59:59.000 And so we need some way of figuring out [br]who gets the ventilator, 9:59:59.000,9:59:59.000 who gets the Intensive Care Unit bed, 9:59:59.000,9:59:59.000 and so on and so forth, [br]as the pandemic increases and goes on. 9:59:59.000,9:59:59.000 And so there were some [br]protocols that were developed 9:59:59.000,9:59:59.000 that were very discriminatory [br]against disabled people. 9:59:59.000,9:59:59.000 There was one in Alabama specifically,[br]that said that anybody 9:59:59.000,9:59:59.000 with an intellectual disability [br]or with dementia was going to be 9:59:59.000,9:59:59.000 deprioritized from getting these [br]life-saving resources if they got COVID-19. 9:59:59.000,9:59:59.000 And there was one in Washington state, [br]that was pretty discriminatory against 9:59:59.000,9:59:59.000 disabled folks that said that [br]if you had a disability 9:59:59.000,9:59:59.000 that meant that even after treatment [br]you are still going to be disabled, 9:59:59.000,9:59:59.000 that you would be deprioritized from [br]getting the life-saving, life support 9:59:59.000,9:59:59.000 treatment for COVID-19. 9:59:59.000,9:59:59.000 So there was a variety of these all over[br]the United States 9:59:59.000,9:59:59.000 that were really problematic and [br]that explicitly were discriminating 9:59:59.000,9:59:59.000 against disabled people when it came to [br]getting treatment for COVID 9:59:59.000,9:59:59.000 and so in response, there were some folks[br]from protection and advocacy agencies, 9:59:59.000,9:59:59.000 which are sort of these--[br]Disability Rights California is one, 9:59:59.000,9:59:59.000 and each state has protection and advocacy[br]agencies that are federally funded, 9:59:59.000,9:59:59.000 non-profit law firms that protect the [br]rights of disabled people and so they 9:59:59.000,9:59:59.000 sued these states and these hospital [br]systems and got the federal government to 9:59:59.000,9:59:59.000 provide guidelines for treatment ration [br]protocols that basically say 9:59:59.000,9:59:59.000 that you can't discriminate against [br]disabled people in this way. 9:59:59.000,9:59:59.000 That the only time that you can withhold[br]treatment for COVID-19 is if there is 9:59:59.000,9:59:59.000 sort of a very clear way in which the [br]disability means that person would not 9:59:59.000,9:59:59.000 benefit from the treatment, that, you know[br]they have the kind of disability 9:59:59.000,9:59:59.000 that would make it very, very unlikely[br]that they would survive the virus 9:59:59.000,9:59:59.000 even with some kind of ventilator or[br]intensive care situation. 9:59:59.000,9:59:59.000 And so, that's of course very different[br]because something like needing 9:59:59.000,9:59:59.000 an assistive device like a wheelchair or[br]needing help dressing and bathing 9:59:59.000,9:59:59.000 or having these things that would've meant [br]that people would be rationed out 9:59:59.000,9:59:59.000 of these protocols... 9:59:59.000,9:59:59.000 So of course this is a really good thing that [br]these protocols are changed because 9:59:59.000,9:59:59.000 there were a lot of them that would have[br]rationed people out 9:59:59.000,9:59:59.000 for reasons that had nothing to do with whether or not [br]they would survive the virus with treatment 9:59:59.000,9:59:59.000 So whether you use a wheelchair,[br]or need a personal attendant for things 9:59:59.000,9:59:59.000 like dressing and bathing, [br]whether you have an intellectual disability. 9:59:59.000,9:59:59.000 These are reasons that were being used to[br]deny people treatment for COVID-19 that 9:59:59.000,9:59:59.000 have nothing to do with whether or not[br]they would survive the disease. 9:59:59.000,9:59:59.000 This advocacy efforts that were based on[br]the American with Disabilities Act 9:59:59.000,9:59:59.000 sort of made that illegal to do,[br]which is of course an important thing 9:59:59.000,9:59:59.000 it's literally saved peoples lives presumably. 9:59:59.000,9:59:59.000 So that the good news as far as my field[br]of work and the ways of which ADA has 9:59:59.000,9:59:59.000 made an impact, but of course that isn't[br]the only story. There are lots of ways in which 9:59:59.000,9:59:59.000 bioethics can and has been discriminatory[br]towards disabled people in ways that isn't 9:59:59.000,9:59:59.000 addressed by the ADA and that can't really[br]be addressed by the ADA because of the way 9:59:59.000,9:59:59.000 it's written and the kinds of problems[br]it was designed to solve. 9:59:59.000,9:59:59.000 For instance, there is a lot of controversy[br]over the development of different 9:59:59.000,9:59:59.000 reproductive technologies that are designed to[br]prevent the birth of disabled children. 9:59:59.000,9:59:59.000 With intellectual disabilities, [br]with down syndrome, 9:59:59.000,9:59:59.000 with disabilities like mine, dwarfism. 9:59:59.000,9:59:59.000 with disabilities like sometimes [br]genetically linked deafness, and so on. 9:59:59.000,9:59:59.000 And so we have an entire industry 9:59:59.000,9:59:59.000 aimed at genetic testing for these kind of disabilities 9:59:59.000,9:59:59.000 and the prevention of the birth of children 9:59:59.000,9:59:59.000 with these disabilities with 9:59:59.000,9:59:59.000 selective abortion or, now, [br]selective implantation, 9:59:59.000,9:59:59.000 which is when you test embryos 9:59:59.000,9:59:59.000 and then pick the one that you want 9:59:59.000,9:59:59.000 to give birth to. 9:59:59.000,9:59:59.000 And then coming down the pipeline 9:59:59.000,9:59:59.000 is CRISPR, which will be a technology 9:59:59.000,9:59:59.000 that doesn't select a particular embryo 9:59:59.000,9:59:59.000 but rather modifies the embryo itself. 9:59:59.000,9:59:59.000 It sort of-- what's sometimes referred to 9:59:59.000,9:59:59.000 as gene editing or genetic engineering. 9:59:59.000,9:59:59.000 And that isn't a reality yet, 9:59:59.000,9:59:59.000 but scientists are certainly working toward 9:59:59.000,9:59:59.000 the use of that technology to prevent 9:59:59.000,9:59:59.000 disability. 9:59:59.000,9:59:59.000 Now it's something that of course makes 9:59:59.000,9:59:59.000 a lot of people with these disabilities 9:59:59.000,9:59:59.000 very uncomfortable because of 9:59:59.000,9:59:59.000 the message that it might send, right, 9:59:59.000,9:59:59.000 it might send the message that, 9:59:59.000,9:59:59.000 "People like you aren't wanted 9:59:59.000,9:59:59.000 in the world." Right? Meaning "we don't 9:59:59.000,9:59:59.000 need more like you." 9:59:59.000,9:59:59.000 And so, it is sorta of based on, largely, 9:59:59.000,9:59:59.000 stigma around this ability, around ideas 9:59:59.000,9:59:59.000 about quality of life with disabled people, 9:59:59.000,9:59:59.000 that, "if you have a disability, you must 9:59:59.000,9:59:59.000 be miserable, and so we must do everything 9:59:59.000,9:59:59.000 we can to prevent more like you from 9:59:59.000,9:59:59.000 coming into existence," and so on and so 9:59:59.000,9:59:59.000 forth. 9:59:59.000,9:59:59.000 Now, this is a real problem because, 9:59:59.000,9:59:59.000 of course, it comes into conflict with 9:59:59.000,9:59:59.000 values a lot of people hold around 9:59:59.000,9:59:59.000 reproductive liberty, around women being 9:59:59.000,9:59:59.000 able to make choices for themselves 9:59:59.000,9:59:59.000 about their own bodies, and about their 9:59:59.000,9:59:59.000 own lives, and so on and so forth. 9:59:59.000,9:59:59.000 And so, this has created a tension between 9:59:59.000,9:59:59.000 disability bioethics and other kinds of 9:59:59.000,9:59:59.000 progressive groups that are wanting to 9:59:59.000,9:59:59.000 promote freedom and justice for everybody. 9:59:59.000,9:59:59.000 And so the ADA, you know, isn't designed 9:59:59.000,9:59:59.000 to handle something like this because 9:59:59.000,9:59:59.000 it's not about overt discrimination 9:59:59.000,9:59:59.000 against people, but rather it's about 9:59:59.000,9:59:59.000 attitudes about beliefs, about disability, 9:59:59.000,9:59:59.000 that drive personal decisions. 9:59:59.000,9:59:59.000 And so it's really really hard to address 9:59:59.000,9:59:59.000 this as a policy problem because people 9:59:59.000,9:59:59.000 aren't going to be very keen on 9:59:59.000,9:59:59.000 restricting the kind of decisions women 9:59:59.000,9:59:59.000 and families can make about reproduction. 9:59:59.000,9:59:59.000 But at the same time, we want to promote 9:59:59.000,9:59:59.000 good beliefs, and true beliefs, and good 9:59:59.000,9:59:59.000 attitudes about disability, and the ways 9:59:59.000,9:59:59.000 in which it contributes to the world, 9:59:59.000,9:59:59.000 in the ways in which disabilities form 9:59:59.000,9:59:59.000 a diversity that's important that we 9:59:59.000,9:59:59.000 don't want to eliminate. 9:59:59.000,9:59:59.000 And so that's, I think, a task for folks 9:59:59.000,9:59:59.000 like myself and bioethics that are writing 9:59:59.000,9:59:59.000 about these issues, that are trying to 9:59:59.000,9:59:59.000 make arguments that are able to walk this 9:59:59.000,9:59:59.000 very thin line between saying, 9:59:59.000,9:59:59.000 "Okay, disability is the kind of thing 9:59:59.000,9:59:59.000 that is not a horrible life sentence of 9:59:59.000,9:59:59.000 misery, and so we don't want to make that 9:59:59.000,9:59:59.000 assumption and we don't want to base the 9:59:59.000,9:59:59.000 technologies that we develop or the 9:59:59.000,9:59:59.000 decisions that we make on that assumption. 9:59:59.000,9:59:59.000 But at the same time, we don't want to 9:59:59.000,9:59:59.000 tell people what they can or can't do 9:59:59.000,9:59:59.000 with their bodies." 9:59:59.000,9:59:59.000 I think that, if I were to pick one thing 9:59:59.000,9:59:59.000 to change, it'd be to try to give people 9:59:59.000,9:59:59.000 with disabilities more access, and to remove 9:59:59.000,9:59:59.000 remove barriers to a life of flourishing 9:59:59.000,9:59:59.000 and opportunity for disabled people. 9:59:59.000,9:59:59.000 I think I would go back to my birth story, 9:59:59.000,9:59:59.000 my origin story if you will. 9:59:59.000,9:59:59.000 When I was born, the doctor that delivered 9:59:59.000,9:59:59.000 me looked at my body and he had never 9:59:59.000,9:59:59.000 seen somebody with my kind of Dwarfism 9:59:59.000,9:59:59.000 before, and didn't know much about it, 9:59:59.000,9:59:59.000 and he told my parents, 9:59:59.000,9:59:59.000 "he's not gonna do much, he's not gonna be 9:59:59.000,9:59:59.000 able to walk, he's not gonna be able 9:59:59.000,9:59:59.000 to talk, he's not gonna be able to go to 9:59:59.000,9:59:59.000 school," and so on and so forth. 9:59:59.000,9:59:59.000 "You should place him in a 9:59:59.000,9:59:59.000 state institution and 9:59:59.000,9:59:59.000 go about your lives, forget about him." 9:59:59.000,9:59:59.000 And they didn't do that, obviously. 9:59:59.000,9:59:59.000 They chose not to do that. 9:59:59.000,9:59:59.000 They took me home, they raised me 9:59:59.000,9:59:59.000 like their kid because I was their kid. 9:59:59.000,9:59:59.000 And so I think a lot about how different 9:59:59.000,9:59:59.000 my life would be if I had been 9:59:59.000,9:59:59.000 institutionalized from birth, as that 9:59:59.000,9:59:59.000 doctor recommended. 9:59:59.000,9:59:59.000 And then I think about how these 9:59:59.000,9:59:59.000 institutions still exist. 9:59:59.000,9:59:59.000 That when I was-- before I entered 9:59:59.000,9:59:59.000 academia full-time, I worked as an 9:59:59.000,9:59:59.000 advocate a protection and advocacy agency 9:59:59.000,9:59:59.000 in the state of Texas, where they have 9:59:59.000,9:59:59.000 what are called, 9:59:59.000,9:59:59.000 "state supported living centers," 9:59:59.000,9:59:59.000 which are-- sort of a euphemism for 9:59:59.000,9:59:59.000 state institutions where they warehouse 9:59:59.000,9:59:59.000 people with intellectual disabilities and 9:59:59.000,9:59:59.000 psychiatric disabilities of various kinds. 9:59:59.000,9:59:59.000 Basically the kind of place that the 9:59:59.000,9:59:59.000 doctor was recommending my parents 9:59:59.000,9:59:59.000 to put me. 9:59:59.000,9:59:59.000 They still exist, almost 9:59:59.000,9:59:59.000 forty[?] years later. 9:59:59.000,9:59:59.000 This is not okay. 9:59:59.000,9:59:59.000 And it's not just these kind of places 9:59:59.000,9:59:59.000 that are really problematic. 9:59:59.000,9:59:59.000 Nursing homes, there's lots of disabled 9:59:59.000,9:59:59.000 people in nursing homes. 9:59:59.000,9:59:59.000 Even some group home systems 9:59:59.000,9:59:59.000 that are corporate, that are designed to 9:59:59.000,9:59:59.000 make money, and not to make sure that 9:59:59.000,9:59:59.000 people living there are actually living 9:59:59.000,9:59:59.000 good lives, right? 9:59:59.000,9:59:59.000 This is a serious problem when you 9:59:59.000,9:59:59.000 take people and you put them in 9:59:59.000,9:59:59.000 a situation where they don't have control 9:59:59.000,9:59:59.000 the basic decisions of their life: 9:59:59.000,9:59:59.000 what they eat for their meals, when they 9:59:59.000,9:59:59.000 wake up, when they go to bed, 9:59:59.000,9:59:59.000 how they spend their time, what they wear.