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 Institute in 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 specialized in philosophy of 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 lots 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 --> 00:01:15.693 a more systematic discrimination 00:01:15.693 --> 00:01:18.580 that sort of excluded me from something 00:01:18.580 --> 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 that 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 that the 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 sort 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 the public schools 00:02:10.988 --> 00:02:13.812 in my town up until through 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 go to 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 went 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 --> 00:03:13.746 to make accommodations for me 99:59:59.999 --> 99:59:59.999 so I ended up going to the public school 99:59:59.999 --> 99:59:59.999 in my town, which actually, personally, 99:59:59.999 --> 99:59:59.999 I was pretty happy about anyway, 99:59:59.999 --> 99:59:59.999 because that's where all my friends were going. 99:59:59.999 --> 99:59:59.999 But it still sort of clued me in 99:59:59.999 --> 99:59:59.999 to the fact that... 99:59:59.999 --> 99:59:59.999 not everything is accessible, 99:59:59.999 --> 99:59:59.999 not everything is designed for me and that 99:59:59.999 --> 99:59:59.999 this was going to be something 99:59:59.999 --> 99:59:59.999 I was gonna have to figure out 99:59:59.999 --> 99:59:59.999 throughout my life. 99:59:59.999 --> 99:59:59.999 As far as remembering the ADA 99:59:59.999 --> 99:59:59.999 and sort of its passage 99:59:59.999 --> 99:59:59.999 and that sort of thing, 99:59:59.999 --> 99:59:59.999 I was pretty young when it was passed, 99:59:59.999 --> 99:59:59.999 I'm sometimes referred to as part of the 99:59:59.999 --> 99:59:59.999 ADA generation, which means that 99:59:59.999 --> 99:59:59.999 I sort of grew up with the ADA mostly, 99:59:59.999 --> 99:59:59.999 I was born in 1982, 99:59:59.999 --> 99:59:59.999 and so I was 8 or 9 years old when the ADA 99:59:59.999 --> 99:59:59.999 passed, and so I don't really have 99:59:59.999 --> 99:59:59.999 any kind of recollection of, "Aha!" 99:59:59.999 --> 99:59:59.999 That's the moment that it passed. 99:59:59.999 --> 99:59:59.999 And the recall of where I was at the time 99:59:59.999 --> 99:59:59.999 or anything like this, 99:59:59.999 --> 99:59:59.999 but I do remember my father explaining 99:59:59.999 --> 99:59:59.999 it to me, around the time of my 99:59:59.999 --> 99:59:59.999 start of high school. 99:59:59.999 --> 99:59:59.999 When I experienced this with that 99:59:59.999 --> 99:59:59.999 private catholic school, and you know 99:59:59.999 --> 99:59:59.999 having that sort of systematic 99:59:59.999 --> 99:59:59.999 discrimination experience it explained 99:59:59.999 --> 99:59:59.999 that public schools, and other kinds of 99:59:59.999 --> 99:59:59.999 public places were accessible to me 99:59:59.999 --> 99:59:59.999 because of the ADA and that there was NOTE Paragraph 99:59:59.999 --> 99:59:59.999 this law that said that things had to be 99:59:59.999 --> 99:59:59.999 accessible to people 99:59:59.999 --> 99:59:59.999 who use wheelchairs, and 99:59:59.999 --> 99:59:59.999 motorized scooters like I did at the time. 99:59:59.999 --> 99:59:59.999 And so, that was my first sort of 99:59:59.999 --> 99:59:59.999 awareness of the ADA, as well as my first 99:59:59.999 --> 99:59:59.999 awareness of discrimination, which is 99:59:59.999 --> 99:59:59.999 kind of cool. I think? 99:59:59.999 --> 99:59:59.999 Because it was neat to have 99:59:59.999 --> 99:59:59.999 that experience of, "Okay, well, 99:59:59.999 --> 99:59:59.999 this is something that's going to be a challenge for you, 99:59:59.999 --> 99:59:59.999 and here's how you're protected, and here's how you can do something 99:59:59.999 --> 99:59:59.999 about it." And so in a way, it was this sort of, 99:59:59.999 --> 99:59:59.999 my awakening into advocacy as well. 99:59:59.999 --> 99:59:59.999 Now, as far as the difference that the ADA has made in my life, 99:59:59.999 --> 99:59:59.999 or the life of others, I think that it's been, of course 99:59:59.999 --> 99:59:59.999 an incredibly important law that has opened up all sorts of opportunities 99:59:59.999 --> 99:59:59.999 to people, everything from public transportation, to be able to move around 99:59:59.999 --> 99:59:59.999 your community, the homestead decision is based on ADA, which says that people 99:59:59.999 --> 99:59:59.999 need to be--when they need any kind of long time care, 99:59:59.999 --> 99:59:59.999 they need to be served in the least restrictive environment, meaning that 99:59:59.999 --> 99:59:59.999 you can't just institutionalize or warehouse somebody because it's more 99:59:59.999 --> 99:59:59.999 convenient for you, you need to make sure that they're able to live in the community 99:59:59.999 --> 99:59:59.999 or somewhere that is going to be best for them. 99:59:59.999 --> 99:59:59.999 What else do the ADA do? Just the ability to you know an education, 99:59:59.999 --> 99:59:59.999 the ability to get a job, all of these things, for me and for others, 99:59:59.999 --> 99:59:59.999 were sort of caused by the ADA and I can't really imagine what it was like 99:59:59.999 --> 99:59:59.999 prior to the ADA, honestly. 99:59:59.999 --> 99:59:59.999 I mean, I can imagine it I guess, but I'm sure glad that I didn't have to 99:59:59.999 --> 99:59:59.999 experience it. 99:59:59.999 --> 99:59:59.999 The ADA makes a difference in a wide range of personal experiences 99:59:59.999 --> 99:59:59.999 and also a wide range of sort of disability politics issues. Right? 99:59:59.999 --> 99:59:59.999 So, my personal experience that I think most recently has been impacted by the ADA 99:59:59.999 --> 99:59:59.999 has been just my ability to live an independent life with my two kids. 99:59:59.999 --> 99:59:59.999 I think prior to the ADA, it would've been much harder to do that. 99:59:59.999 --> 99:59:59.999 You know raising kids means that I have to into lots of different public spaces and 99:59:59.999 --> 99:59:59.999 do different things that I might not have been 'required' to do, if you will, 99:59:59.999 --> 99:59:59.999 professionally, or just sort of in everyday life, if I didn't have them. 99:59:59.999 --> 99:59:59.999 So going to the zoo, or going to the grocery store, for that last minute item 99:59:59.999 --> 99:59:59.999 or you know, just whatever it might be, I think that, you know-- 99:59:59.999 --> 99:59:59.999 opening up the daycare centers, and so on and so forth. 99:59:59.999 --> 99:59:59.999 The ADA sort of opened all of that up to me, as a wheelchair user 99:59:59.999 --> 99:59:59.999 and so, that's where it's made a big personal impact in my life recently. 99:59:59.999 --> 99:59:59.999 Now, I think that the one thing that I can sort of speak to, professionally, 99:59:59.999 --> 99:59:59.999 about the ADA and its impact or lack of impact is probably, two-fold: 99:59:59.999 --> 99:59:59.999 One, is the ways in which my privilege as a physically disabled-- 99:59:59.999 --> 99:59:59.999 there's a disability hierarchy of course, and so physical disability 99:59:59.999 --> 99:59:59.999 is usually at the top of that hierarchy, with psychiatric disabilities 99:59:59.999 --> 99:59:59.999 and intellectual developmental disabilities, 99:59:59.999 --> 99:59:59.999 are sort of lower down on the hierarchy. 99:59:59.999 --> 99:59:59.999 And so, as a physically disabled, cisgender, heterosexual white guy, 99:59:59.999 --> 99:59:59.999 I've benefited a lot more from the ADA than lots of other people 99:59:59.999 --> 99:59:59.999 that don't have those kinds of privileges. 99:59:59.999 --> 99:59:59.999 I think for instance about how the ADA is designed, really 99:59:59.999 --> 99:59:59.999 to promote what you'd think of as equality of opportunity, 99:59:59.999 --> 99:59:59.999 meaning that everybody has an equal opportunity to compete within sort of the 99:59:59.999 --> 99:59:59.999 economic life of the United States, and so, it allows you to enter into the 99:59:59.999 --> 99:59:59.999 workforce and enter into the educational system and so on and so forth 99:59:59.999 --> 99:59:59.999 then compete. 99:59:59.999 --> 99:59:59.999 But what it doesn't do is it doesn't address any of the other advantages 99:59:59.999 --> 99:59:59.999 or disadvantages that intersect with ableism. So that's sort of something 99:59:59.999 --> 99:59:59.999 that is I think, a real problem, with the ADA. 99:59:59.999 --> 99:59:59.999 I'm a well-educated person, I have a master's degree and a Ph.D. 99:59:59.999 --> 99:59:59.999 and that, I don't think would've been available to me as easily as it was 99:59:59.999 --> 99:59:59.999 if I didn't have these other privileges that I do have, 99:59:59.999 --> 99:59:59.999 that the ADA doesn't do anything to address, it just sort of treats 99:59:59.999 --> 99:59:59.999 all disabled people as if they were the same, and as if the only thing 99:59:59.999 --> 99:59:59.999 they have to deal with is structural ableism, and that's just not true, right? 99:59:59.999 --> 99:59:59.999 I think another thing about disability that the ADA doesn't address 99:59:59.999 --> 99:59:59.999 is economics, in that, I think that despite the ability to compete, 99:59:59.999 --> 99:59:59.999 a lot of disabled people still live in extreme poverty, because of other 99:59:59.999 --> 99:59:59.999 things that make it impossible for them to compete, 99:59:59.999 --> 99:59:59.999 other than just their disability. 99:59:59.999 --> 99:59:59.999 And so, the real sad part to me about that is you look at other systems 99:59:59.999 --> 99:59:59.999 that are designed to help disabled people get out of poverty, 99:59:59.999 --> 99:59:59.999 and even they don't recognize the way that privilege operates in these contexts. 99:59:59.999 --> 99:59:59.999 So, for instance, the vocational rehab system. 99:59:59.999 --> 99:59:59.999 I've benefited greatly from the vocational rehab system so I don't want to just 99:59:59.999 --> 99:59:59.999 sit here and talk smack on it, right? 99:59:59.999 --> 99:59:59.999 The vocational rehab system has helped me get a van that I could drive, 99:59:59.999 --> 99:59:59.999 so I could get back and forth from 99:59:59.999 --> 99:59:59.999 my place of employment, from school, which was huge, right? 99:59:59.999 --> 99:59:59.999 But the only reason why I had access to that van was: 99:59:59.999 --> 99:59:59.999 A. Because I could afford the van itself, which not a lot of disabled people can do, 99:59:59.999 --> 99:59:59.999 especially if they aren't working yet and 99:59:59.999 --> 99:59:59.999 B. Because the VOC rehab counselor thought 99:59:59.999 --> 99:59:59.999 that I was worth the investment right? 99:59:59.999 --> 99:59:59.999 Someone who didn't have the advantages that I had, as far as the kind of 99:59:59.999 --> 99:59:59.999 disability that I have, my family's resources and my skin color and gender and 99:59:59.999 --> 99:59:59.999 all those things, it's very likely that rehab counselor would've said, 99:59:59.999 --> 99:59:59.999 "You cant take the bus," right? 99:59:59.999 --> 99:59:59.999 "We're not going to invest all of this money into helping 99:59:59.999 --> 99:59:59.999 you learn how to drive." 99:59:59.999 --> 99:59:59.999 Because they wouldn't have believed that they would get this return on their 99:59:59.999 --> 99:59:59.999 investment that the person would be able to get a well paying job, 99:59:59.999 --> 99:59:59.999 and so on and so forth, and so, I think that that's also 99:59:59.999 --> 99:59:59.999 a big issue that the ADA doesn't address, is this kind of intersectionality 99:59:59.999 --> 99:59:59.999 that gives some disabled people advantages within even the system 99:59:59.999 --> 99:59:59.999 that is designed to help them, and other people, of course, disadvantages, which is 99:59:59.999 --> 99:59:59.999 a real issue. 99:59:59.999 --> 99:59:59.999 Now, as far as my area of expertise, Bioethics, there's definitely been some 99:59:59.999 --> 99:59:59.999 ways in which the ADA has helped greatly, and other ways 99:59:59.999 --> 99:59:59.999 in which it hasn't really done much. 99:59:59.999 --> 99:59:59.999 So I'll start with the positivity, right? We'll start with the good news. 99:59:59.999 --> 99:59:59.999 One way in which I think, I can point to in a very concrete way in which NOTE Paragraph 99:59:59.999 --> 99:59:59.999 has helped is when it comes to healthcare 99:59:59.999 --> 99:59:59.999 The issue of healthcare in the United States of course is a very hot button topic 99:59:59.999 --> 99:59:59.999 and it's hot because there is a perceived lack of resources--There's more need 99:59:59.999 --> 99:59:59.999 than there is supply for healthcare. 99:59:59.999 --> 99:59:59.999 And so, when we talk about expanding healthcare to a larger number of people, 99:59:59.999 --> 99:59:59.999 without also expanding the resources that are being devoted to healthcare, 99:59:59.999 --> 99:59:59.999 then that's gonna be a real problem, because some people aren't going to get 99:59:59.999 --> 99:59:59.999 as much as they need, right? 99:59:59.999 --> 99:59:59.999 You're going to have to sort of budget it, if you will. 99:59:59.999 --> 99:59:59.999 Or in the terms of bioethics, ration healthcare. 99:59:59.999 --> 99:59:59.999 Now this proved to be an issue because 99:59:59.999 --> 99:59:59.999 when it was done on smaller scale, for instance the state of Oregon, 99:59:59.999 --> 99:59:59.999 after the passage of the ADA-- I'm not sure exactly on the timeline, 99:59:59.999 --> 99:59:59.999 I'm not a historian--but the state of Oregon expanded their publicly provided 99:59:59.999 --> 99:59:59.999 healthcare to a larger number of people, and as they did that, they needed to 99:59:59.999 --> 99:59:59.999 make sure that they had a way of prioritizing what was covered 99:59:59.999 --> 99:59:59.999 and what was not covered. 99:59:59.999 --> 99:59:59.999 And so, as they did this, 99:59:59.999 --> 99:59:59.999 it became apparent that a lot of disabled people 99:59:59.999 --> 99:59:59.999 were being rationed out of the healthcare system. 99:59:59.999 --> 99:59:59.999 That a lot of things were not being covered for disabled folks 99:59:59.999 --> 99:59:59.999 that should be. 99:59:59.999 --> 99:59:59.999 And so, there was a series of lawsuits that were brought against 99:59:59.999 --> 99:59:59.999 the state of Oregon, that basically said that, "You couldn't discriminate 99:59:59.999 --> 99:59:59.999 against disabled people and not provide them with healthcare, 99:59:59.999 --> 99:59:59.999 based on their disability." 99:59:59.999 --> 99:59:59.999 That you couldn't sort of say, 99:59:59.999 --> 99:59:59.999 "Well, this person isn't going to get very much bang for their buck, 99:59:59.999 --> 99:59:59.999 they're not gonna end up being healthy anyway, 'cause they're still going 99:59:59.999 --> 99:59:59.999 to be disabled, so we're not going to give them this treatment option." 99:59:59.999 --> 99:59:59.999 Right? And so that was a big win within bioethics 99:59:59.999 --> 99:59:59.999 that was a direct result of the ADA. 99:59:59.999 --> 99:59:59.999 More recently, we've had a similar thing pop up 99:59:59.999 --> 99:59:59.999 because of the COVID-19 pandemic. 99:59:59.999 --> 99:59:59.999 Specifically, there are what are called "Emergency Healthcare Protocols" 99:59:59.999 --> 99:59:59.999 that are being developed for hospital systems and states that anticipate 99:59:59.999 --> 99:59:59.999 needing more intensive care unit beds, ventilators and so on and so forth, 99:59:59.999 --> 99:59:59.999 that aren't actually available. 99:59:59.999 --> 99:59:59.999 And so we need some way of figuring out who gets the ventilator, 99:59:59.999 --> 99:59:59.999 who gets the Intensive Care Unit bed, 99:59:59.999 --> 99:59:59.999 and so on and so forth, as the pandemic increases and goes on. 99:59:59.999 --> 99:59:59.999 And so there were some protocols that were developed 99:59:59.999 --> 99:59:59.999 that were very discriminatory against disabled people. 99:59:59.999 --> 99:59:59.999 There was one in Alabama specifically, that said that anybody 99:59:59.999 --> 99:59:59.999 with an intellectual disability or with dementia was going to be 99:59:59.999 --> 99:59:59.999 deprioritized from getting these life-saving resources if they got COVID-19. 99:59:59.999 --> 99:59:59.999 And there was one in Washington state, that was pretty discriminatory against 99:59:59.999 --> 99:59:59.999 disabled folks that said that if you had a disability 99:59:59.999 --> 99:59:59.999 that meant that even after treatment you are still going to be disabled, 99:59:59.999 --> 99:59:59.999 that you would be deprioritized from getting the life-saving, life support 99:59:59.999 --> 99:59:59.999 treatment for COVID-19. 99:59:59.999 --> 99:59:59.999 So there was a variety of these all over the United States 99:59:59.999 --> 99:59:59.999 that were really problematic and that explicitly were discriminating 99:59:59.999 --> 99:59:59.999 against disabled people when it came to getting treatment for COVID 99:59:59.999 --> 99:59:59.999 and so in response, there were some folks from protection and advocacy agencies, 99:59:59.999 --> 99:59:59.999 which are sort of these-- Disability Rights California is one, 99:59:59.999 --> 99:59:59.999 and each state has protection and advocacy agencies that are federally funded, 99:59:59.999 --> 99:59:59.999 non-profit law firms that protect the rights of disabled people and so they 99:59:59.999 --> 99:59:59.999 sued these states and these hospital systems and got the federal government to 99:59:59.999 --> 99:59:59.999 provide guidelines for treatment ration protocols that basically say 99:59:59.999 --> 99:59:59.999 that you can't discriminate against disabled people in this way. 99:59:59.999 --> 99:59:59.999 That the only time that you can withhold treatment for COVID-19 is if there is 99:59:59.999 --> 99:59:59.999 sort of a very clear way in which the disability means that person would not 99:59:59.999 --> 99:59:59.999 benefit from the treatment, that, you know they have the kind of disability 99:59:59.999 --> 99:59:59.999 that would make it very, very unlikely that they would survive the virus 99:59:59.999 --> 99:59:59.999 even with some kind of ventilator or intensive care situation. 99:59:59.999 --> 99:59:59.999 And so, that's of course very different because something like needing 99:59:59.999 --> 99:59:59.999 an assistive device like a wheelchair or needing help dressing and bathing 99:59:59.999 --> 99:59:59.999 or having these things that would've meant that people would be rationed out 99:59:59.999 --> 99:59:59.999 of these protocols... 99:59:59.999 --> 99:59:59.999 So of course this is a really good thing that these protocols are changed because 99:59:59.999 --> 99:59:59.999 there were a lot of them that would have rationed people out 99:59:59.999 --> 99:59:59.999 for reasons that had nothing to do with whether or not they would survive the virus with treatment 99:59:59.999 --> 99:59:59.999 So whether you use a wheelchair, or need a personal attendant for things 99:59:59.999 --> 99:59:59.999 like dressing and bathing, whether you have an intellectual disability. 99:59:59.999 --> 99:59:59.999 These are reasons that were being used to deny people treatment for COVID-19 that 99:59:59.999 --> 99:59:59.999 have nothing to do with whether or not they would survive the disease. 99:59:59.999 --> 99:59:59.999 This advocacy efforts that were based on the American with Disabilities Act 99:59:59.999 --> 99:59:59.999 sort of made that illegal to do, which is of course an important thing 99:59:59.999 --> 99:59:59.999 it's literally saved peoples lives presumably. 99:59:59.999 --> 99:59:59.999 So that the good news as far as my field of work and the ways of which ADA has 99:59:59.999 --> 99:59:59.999 made an impact, but of course that isn't the only story. There are lots of ways in which 99:59:59.999 --> 99:59:59.999 bioethics can and has been discriminatory towards disabled people in ways that isn't 99:59:59.999 --> 99:59:59.999 addressed by the ADA and that can't really be addressed by the ADA because of the way 99:59:59.999 --> 99:59:59.999 it's written and the kinds of problems it was designed to solve. 99:59:59.999 --> 99:59:59.999 For instance, there is a lot of controversy over the development of different 99:59:59.999 --> 99:59:59.999 reproductive technologies that are designed to prevent the birth of disabled children. 99:59:59.999 --> 99:59:59.999 With intellectual disabilities, with down syndrome, 99:59:59.999 --> 99:59:59.999 with disabilities like mine, dwarfism. 99:59:59.999 --> 99:59:59.999 with disabilities like sometimes genetically linked deafness, and so on. 99:59:59.999 --> 99:59:59.999 And so we have an entire industry 99:59:59.999 --> 99:59:59.999 aimed at genetic testing for these kind of disabilities 99:59:59.999 --> 99:59:59.999 and the prevention of the birth of children 99:59:59.999 --> 99:59:59.999 with these disabilities with 99:59:59.999 --> 99:59:59.999 selective abortion or, now, selective implantation, 99:59:59.999 --> 99:59:59.999 which is when you test embryos 99:59:59.999 --> 99:59:59.999 and then pick the one that you want 99:59:59.999 --> 99:59:59.999 to give birth to. 99:59:59.999 --> 99:59:59.999 And then coming down the pipeline 99:59:59.999 --> 99:59:59.999 is CRISPR, which will be a technology 99:59:59.999 --> 99:59:59.999 that doesn't select a particular embryo 99:59:59.999 --> 99:59:59.999 but rather modifies the embryo itself. 99:59:59.999 --> 99:59:59.999 It sort of-- what's sometimes referred to 99:59:59.999 --> 99:59:59.999 as gene editing or genetic engineering. 99:59:59.999 --> 99:59:59.999 And that isn't a reality yet, 99:59:59.999 --> 99:59:59.999 but scientists are certainly working toward 99:59:59.999 --> 99:59:59.999 the use of that technology to prevent 99:59:59.999 --> 99:59:59.999 disability. 99:59:59.999 --> 99:59:59.999 Now it's something that of course makes 99:59:59.999 --> 99:59:59.999 a lot of people with these disabilities 99:59:59.999 --> 99:59:59.999 very uncomfortable because of 99:59:59.999 --> 99:59:59.999 the message that it might send, right, 99:59:59.999 --> 99:59:59.999 it might send the message that, 99:59:59.999 --> 99:59:59.999 "People like you aren't wanted 99:59:59.999 --> 99:59:59.999 in the world." Right? Meaning "we don't 99:59:59.999 --> 99:59:59.999 need more like you." 99:59:59.999 --> 99:59:59.999 And so, it is sorta of based on, largely, 99:59:59.999 --> 99:59:59.999 stigma around this ability, around ideas 99:59:59.999 --> 99:59:59.999 about quality of life with disabled people, 99:59:59.999 --> 99:59:59.999 that, "if you have a disability, you must 99:59:59.999 --> 99:59:59.999 be miserable, and so we must do everything 99:59:59.999 --> 99:59:59.999 we can to prevent more like you from 99:59:59.999 --> 99:59:59.999 coming into existence," and so on and so 99:59:59.999 --> 99:59:59.999 forth. 99:59:59.999 --> 99:59:59.999 Now, this is a real problem because, 99:59:59.999 --> 99:59:59.999 of course, it comes into conflict with 99:59:59.999 --> 99:59:59.999 values a lot of people hold around 99:59:59.999 --> 99:59:59.999 reproductive liberty, around women being 99:59:59.999 --> 99:59:59.999 able to make choices for themselves 99:59:59.999 --> 99:59:59.999 about their own bodies, and about their 99:59:59.999 --> 99:59:59.999 own lives, and so on and so forth. 99:59:59.999 --> 99:59:59.999 And so, this has created a tension between 99:59:59.999 --> 99:59:59.999 disability bioethics and other kinds of 99:59:59.999 --> 99:59:59.999 progressive groups that are wanting to 99:59:59.999 --> 99:59:59.999 promote freedom and justice for everybody. 99:59:59.999 --> 99:59:59.999 And so the ADA, you know, isn't designed 99:59:59.999 --> 99:59:59.999 to handle something like this because 99:59:59.999 --> 99:59:59.999 it's not about overt discrimination 99:59:59.999 --> 99:59:59.999 against people, but rather it's about 99:59:59.999 --> 99:59:59.999 attitudes about beliefs, about disability, 99:59:59.999 --> 99:59:59.999 that drive personal decisions. 99:59:59.999 --> 99:59:59.999 And so it's really really hard to address 99:59:59.999 --> 99:59:59.999 this as a policy problem because people 99:59:59.999 --> 99:59:59.999 aren't going to be very keen on 99:59:59.999 --> 99:59:59.999 restricting the kind of decisions women 99:59:59.999 --> 99:59:59.999 and families can make about reproduction. 99:59:59.999 --> 99:59:59.999 But at the same time, we want to promote 99:59:59.999 --> 99:59:59.999 good beliefs, and true beliefs, and good 99:59:59.999 --> 99:59:59.999 attitudes about disability, and the ways 99:59:59.999 --> 99:59:59.999 in which it contributes to the world, 99:59:59.999 --> 99:59:59.999 in the ways in which disabilities form 99:59:59.999 --> 99:59:59.999 a diversity that's important that we 99:59:59.999 --> 99:59:59.999 don't want to eliminate. 99:59:59.999 --> 99:59:59.999 And so that's, I think, a task for folks 99:59:59.999 --> 99:59:59.999 like myself and bioethics that are writing 99:59:59.999 --> 99:59:59.999 about these issues, that are trying to 99:59:59.999 --> 99:59:59.999 make arguments that are able to walk this 99:59:59.999 --> 99:59:59.999 very thin line between saying, 99:59:59.999 --> 99:59:59.999 "Okay, disability is the kind of thing 99:59:59.999 --> 99:59:59.999 that is not a horrible life sentence of 99:59:59.999 --> 99:59:59.999 misery, and so we don't want to make that 99:59:59.999 --> 99:59:59.999 assumption and we don't want to base the 99:59:59.999 --> 99:59:59.999 technologies that we develop or the 99:59:59.999 --> 99:59:59.999 decisions that we make on that assumption. 99:59:59.999 --> 99:59:59.999 But at the same time, we don't want to 99:59:59.999 --> 99:59:59.999 tell people what they can or can't do 99:59:59.999 --> 99:59:59.999 with their bodies." 99:59:59.999 --> 99:59:59.999 I think that, if I were to pick one thing 99:59:59.999 --> 99:59:59.999 to change, it'd be to try to give people 99:59:59.999 --> 99:59:59.999 with disabilities more access, and to remove 99:59:59.999 --> 99:59:59.999 remove barriers to a life of flourishing 99:59:59.999 --> 99:59:59.999 and opportunity for disabled people. 99:59:59.999 --> 99:59:59.999 I think I would go back to my birth story, 99:59:59.999 --> 99:59:59.999 my origin story if you will. 99:59:59.999 --> 99:59:59.999 When I was born, the doctor that delivered 99:59:59.999 --> 99:59:59.999 me looked at my body and he had never 99:59:59.999 --> 99:59:59.999 seen somebody with my kind of Dwarfism 99:59:59.999 --> 99:59:59.999 before, and didn't know much about it, 99:59:59.999 --> 99:59:59.999 and he told my parents, 99:59:59.999 --> 99:59:59.999 "he's not gonna do much, he's not gonna be 99:59:59.999 --> 99:59:59.999 able to walk, he's not gonna be able 99:59:59.999 --> 99:59:59.999 to talk, he's not gonna be able to go to 99:59:59.999 --> 99:59:59.999 school," and so on and so forth. 99:59:59.999 --> 99:59:59.999 "You should place him in a 99:59:59.999 --> 99:59:59.999 state institution and 99:59:59.999 --> 99:59:59.999 go about your lives, forget about him." 99:59:59.999 --> 99:59:59.999 And they didn't do that, obviously. 99:59:59.999 --> 99:59:59.999 They chose not to do that. 99:59:59.999 --> 99:59:59.999 They took me home, they raised me 99:59:59.999 --> 99:59:59.999 like their kid because I was their kid. 99:59:59.999 --> 99:59:59.999 And so I think a lot about how different 99:59:59.999 --> 99:59:59.999 my life would be if I had been 99:59:59.999 --> 99:59:59.999 institutionalized from birth, as that 99:59:59.999 --> 99:59:59.999 doctor recommended. 99:59:59.999 --> 99:59:59.999 And then I think about how these 99:59:59.999 --> 99:59:59.999 institutions still exist. 99:59:59.999 --> 99:59:59.999 That when I was-- before I entered 99:59:59.999 --> 99:59:59.999 academia full-time, I worked as an 99:59:59.999 --> 99:59:59.999 advocate a protection and advocacy agency 99:59:59.999 --> 99:59:59.999 in the state of Texas, where they have 99:59:59.999 --> 99:59:59.999 what are called, 99:59:59.999 --> 99:59:59.999 "state supported living centers," 99:59:59.999 --> 99:59:59.999 which are-- sort of a euphemism for 99:59:59.999 --> 99:59:59.999 state institutions where they warehouse 99:59:59.999 --> 99:59:59.999 people with intellectual disabilities and 99:59:59.999 --> 99:59:59.999 psychiatric disabilities of various kinds. 99:59:59.999 --> 99:59:59.999 Basically the kind of place that the 99:59:59.999 --> 99:59:59.999 doctor was recommending my parents 99:59:59.999 --> 99:59:59.999 to put me. 99:59:59.999 --> 99:59:59.999 They still exist, almost 99:59:59.999 --> 99:59:59.999 forty[?] years later. 99:59:59.999 --> 99:59:59.999 This is not okay. 99:59:59.999 --> 99:59:59.999 And it's not just these kind of places 99:59:59.999 --> 99:59:59.999 that are really problematic. 99:59:59.999 --> 99:59:59.999 Nursing homes, there's lots of disabled 99:59:59.999 --> 99:59:59.999 people in nursing homes. 99:59:59.999 --> 99:59:59.999 Even some group home systems 99:59:59.999 --> 99:59:59.999 that are corporate, that are designed to 99:59:59.999 --> 99:59:59.999 make money, and not to make sure that 99:59:59.999 --> 99:59:59.999 people living there are actually living 99:59:59.999 --> 99:59:59.999 good lives, right? 99:59:59.999 --> 99:59:59.999 This is a serious problem when you 99:59:59.999 --> 99:59:59.999 take people and you put them in 99:59:59.999 --> 99:59:59.999 a situation where they don't have control 99:59:59.999 --> 99:59:59.999 the basic decisions of their life: 99:59:59.999 --> 99:59:59.999 what they eat for their meals, when they 99:59:59.999 --> 99:59:59.999 wake up, when they go to bed, 99:59:59.999 --> 99:59:59.999 how they spend their time, what they wear.