WEBVTT 00:00:00.000 --> 00:00:05.734 Hi,my name is Joseph Scamardo and I am an assistant professor of philosophy 00:00:05.734 --> 00:00:08.638 and associate Director of the Institute in Public Affairs 00:00:08.638 --> 00:00:10.670 at San Diego State University NOTE Paragraph 00:00:11.912 --> 00:00:15.942 I specialized in philosophy of disability and bioethics. 00:00:17.474 --> 00:00:18.884 I also identify as disabled. 00:00:18.884 --> 00:00:22.010 I have a spinal cord injury 00:00:22.010 --> 00:00:24.961 as well as a rare kind of dwarfism, so 00:00:24.961 --> 00:00:27.398 you get two for the price of one with me 00:00:28.874 --> 00:00:37.014 So, my first memory of discrimination was, 00:00:37.517 --> 00:00:40.687 well, it's hard to say... 00:00:43.543 --> 00:00:47.313 I have lots of memories as far as 00:00:47.313 --> 00:00:51.840 the experience of stigma or bigotry, 00:00:51.840 --> 00:00:54.896 mostly around my dwarfism, 00:00:54.896 --> 00:00:56.368 and so, you know, 00:00:56.368 --> 00:00:59.845 I have lots of early memories around that 00:00:59.845 --> 00:01:03.521 with children staring and laughing 00:01:03.521 --> 00:01:07.567 and that sort of thing from a very young age. 00:01:10.325 --> 00:01:13.185 Then as far as, sort of 00:01:13.185 --> 00:01:15.165 a more systematic discrimination 00:01:15.165 --> 00:01:18.129 that sort of excluded me from something 00:01:18.129 --> 00:01:20.580 that I wanted to do, 00:01:22.128 --> 00:01:26.158 I had a pretty good experience as a child, 00:01:26.164 --> 00:01:30.794 mostly because my parents really did a lot 00:01:30.794 --> 00:01:33.934 to make sure that I was included 00:01:33.934 --> 00:01:36.765 I can remember being in boy scouts 00:01:36.765 --> 00:01:38.759 and cub scouts when I was a kid 00:01:38.759 --> 00:01:42.416 and my father, really doing a lot with me 00:01:42.416 --> 00:01:47.103 to ensure that the inclusion of my disability-- 00:01:48.374 --> 00:01:50.634 You know going on camping trips with me 00:01:50.634 --> 00:01:52.909 and sort of acting as a personal attendant 00:01:52.909 --> 00:01:56.028 kinda thing to make sure that I was able 00:01:56.028 --> 00:01:57.988 to go and participate, 00:01:57.988 --> 00:02:00.844 and that sort of thing. 00:02:00.844 --> 00:02:03.243 And so the first real experience 00:02:03.243 --> 00:02:05.338 of exclusion that I can remember 00:02:05.338 --> 00:02:07.709 happened when it was time 00:02:07.709 --> 00:02:09.366 to go to high school. 00:02:09.366 --> 00:02:11.200 I had gone to the public schools 00:02:11.200 --> 00:02:13.968 in my town up until through the 8th grade 00:02:13.968 --> 00:02:16.991 and then when it came to high school, 00:02:17.588 --> 00:02:20.598 I was supposed to go to the same 00:02:21.100 --> 00:02:25.160 private religiously oriented school 00:02:25.160 --> 00:02:27.523 that my older siblings went to 00:02:27.523 --> 00:02:30.250 and I took the entrance exam and even got 00:02:30.250 --> 00:02:33.251 a small scholarship to go and everything, 00:02:33.251 --> 00:02:35.892 but it didn't have an elevator, 00:02:35.892 --> 00:02:39.764 and so I used a motorized scooter 00:02:39.764 --> 00:02:42.529 to get around, and it was 00:02:42.529 --> 00:02:44.317 going to be impossible for me to 00:02:44.317 --> 00:02:47.628 attend that school, because there was no 00:02:47.628 --> 00:02:49.672 elevator. Now this was actually 00:02:49.672 --> 00:02:51.641 after the passage of the ADA, 00:02:52.575 --> 00:02:54.937 but because it was 00:02:54.937 --> 00:02:57.524 a religiously oriented school, 00:02:57.524 --> 00:02:59.996 it was exempt from the requirements 00:02:59.996 --> 00:03:01.545 of the ADA. 00:03:01.545 --> 00:03:05.422 And so, I didn't have any leverage with 00:03:05.422 --> 00:03:06.501 that law. 00:03:06.501 --> 00:03:09.483 To be able to get them 00:03:09.483 --> 00:03:11.652 to make accommodations for me 00:03:11.652 --> 00:03:13.854 so I ended up going to the public school 00:03:13.854 --> 00:03:16.276 in my town, which actually, personally, 00:03:16.276 --> 00:03:17.945 I was pretty happy about anyway, 00:03:17.945 --> 00:03:20.287 because that's where all my friends were going. 00:03:20.287 --> 00:03:23.835 But it still sort of clued me in 00:03:23.835 --> 00:03:25.350 to the fact that... 00:03:26.782 --> 00:03:29.222 not everything is accessible, 00:03:29.222 --> 00:03:32.937 not everything is designed for me and that 00:03:32.937 --> 00:03:34.406 this was going to be something 00:03:34.406 --> 00:03:35.862 I was gonna have to figure out 00:03:35.862 --> 00:03:37.417 throughout my life. 00:03:38.214 --> 00:03:43.214 As far as remembering the ADA 00:03:43.214 --> 00:03:44.653 and sort of its passage 00:03:44.653 --> 00:03:46.051 and that sort of thing, 00:03:46.051 --> 00:03:49.218 I was pretty young when it was passed, 00:03:49.218 --> 00:03:51.304 I was sometimes referred to as part of the 00:03:51.304 --> 00:03:54.759 ADA generation, which means that 00:03:54.759 --> 00:03:57.570 I grew up with the ADA mostly, 00:03:58.408 --> 00:04:00.268 I was born in 1982, 00:04:00.268 --> 00:04:02.925 so I was 8 or 9 years old when the ADA 00:04:02.925 --> 00:04:06.670 passed, and so I don't really have 00:04:06.670 --> 00:04:08.398 any kind of recollection of, "Aha!" 00:04:08.398 --> 00:04:12.715 That's the moment that it passed. 00:04:13.489 --> 00:04:16.117 And the recall of where I was at the time 00:04:16.117 --> 00:04:17.806 or anything like this, 00:04:17.806 --> 00:04:19.627 but I do remember my father explaining 00:04:19.627 --> 00:04:24.186 it to me, around the time of my 00:04:24.186 --> 00:04:26.792 start of high school. 00:04:26.792 --> 00:04:28.554 When I experienced this with that 00:04:28.554 --> 00:04:32.676 private catholic school, and having that 00:04:32.676 --> 00:04:37.324 sort of systematic discrimination experience, 00:04:38.531 --> 00:04:41.801 it explained that public schools, 00:04:41.801 --> 00:04:46.254 and other kinds of public places 00:04:46.254 --> 00:04:50.607 were accessible to me because of the ADA 00:04:50.607 --> 00:04:52.888 and that there was this law that said 00:04:52.888 --> 00:04:56.198 that things had to be accessible to people 00:04:56.198 --> 00:04:57.552 who use wheelchairs, and 00:04:57.552 --> 00:05:00.534 motorized scooters like I did at the time. 00:05:00.534 --> 00:05:03.152 And so, that was my first awareness 00:05:03.152 --> 00:05:05.553 of the ADA, as well as my first awareness 00:05:05.553 --> 00:05:09.096 of discrimination, which is kind of cool, I think? 00:05:09.096 --> 00:05:12.335 Because it was neat to have 00:05:12.335 --> 00:05:13.941 that experience of, "Okay, well, 00:05:13.941 --> 00:05:17.260 this is something that's going to be a challenge for you, 00:05:17.260 --> 00:05:20.474 and here's how you're protected, and here's how you can do something 00:05:20.474 --> 00:05:23.929 about it." And so in a way, it was this sort of, 00:05:23.929 --> 00:05:26.896 my awakening into advocacy as well. 00:05:30.465 --> 00:05:34.775 Now, as far as the difference that the ADA has made in my life, 00:05:35.930 --> 00:05:45.996 or the life of others, I think that it's been, of course 00:05:45.996 --> 00:05:52.060 an incredibly important law that has opened up all sorts of opportunities 00:05:52.060 --> 00:05:58.145 for people, everything from public transportation, to be able to move around 00:05:58.145 --> 00:06:06.612 in your community, the homestead decision is based on ADA, which says that people 00:06:06.612 --> 00:06:10.796 need to be--when they need any kind of long time care, 00:06:10.796 --> 00:06:14.468 they need to be served in the least restrictive environment, meaning that 00:06:14.468 --> 00:06:18.388 you can't just institutionalize or warehouse somebody because it's more 00:06:18.388 --> 00:06:24.539 convenient for you, you need to make sure that they're able to live in the community 00:06:24.539 --> 00:06:28.867 or somewhere that is going to be best for them. 00:06:31.650 --> 00:06:39.454 What else do the ADA do? Just the ability to get an education, 00:06:39.454 --> 00:06:46.179 the ability to get a job, all of these things, for me and for others, 00:06:46.179 --> 00:06:52.745 were sort of caused by the ADA and I can't really imagine what it was like 00:06:52.745 --> 00:06:54.627 prior to the ADA, honestly. 00:06:54.627 --> 00:06:58.530 I mean, I can imagine it I guess, but I'm sure glad that I didn't have to 00:06:58.530 --> 00:06:59.691 experience it. 00:07:00.270 --> 00:07:07.891 The ADA makes a difference in a wide range of personal experiences 00:07:07.891 --> 00:07:14.232 and also a wide range of disability politics issues. 00:07:15.516 --> 00:07:28.306 So, my personal experience that I think most recently has been impacted by the ADA 00:07:28.306 --> 00:07:38.149 has been my ability to live an independent life with my two kids. 00:07:39.048 --> 00:07:44.430 I think prior to the ADA, it would've been much harder to do that. 00:07:46.269 --> 00:07:52.084 Raising kids means that I have to go into lots of different public spaces and do 00:07:52.084 --> 00:07:58.437 different things that I might not have been 'required' to do, if you will, 00:07:58.437 --> 00:08:02.124 professionally, or just sort of in everyday life, if I didn't have them. 00:08:02.124 --> 00:08:07.452 So going to the zoo, or going to the grocery store, for that last minute item 00:08:07.452 --> 00:08:16.417 or you know, just whatever it might be, I think that, you know-- 00:08:16.417 --> 00:08:20.417 opening up the daycare centers, and so on and so forth. 00:08:20.417 --> 00:08:24.116 The ADA sort of opened all of that up to me, as a wheelchair user 00:08:24.116 --> 00:08:31.575 and so, that's where it's made a big personal impact in my life recently. 00:08:33.578 --> 00:08:39.698 Now, I think that the one thing that I can sort of speak to, professionally, 00:08:39.698 --> 00:08:49.618 about the ADA and its impact or lack of impact is probably, two-fold: 00:08:49.618 --> 00:09:00.973 One, is the ways in which my privilege as a physically disabled-- 00:09:00.973 --> 00:09:04.256 there's a disability hierarchy of course, and so physical disability 00:09:04.256 --> 00:09:10.624 is usually at the top of that hierarchy, with psychiatric disabilities 00:09:10.624 --> 00:09:13.148 and intellectual developmental disabilities, 00:09:13.148 --> 00:09:15.317 are sort of lower down on the hierarchy. 00:09:15.317 --> 00:09:22.951 And so, as a physically disabled, cisgender, heterosexual white guy, 00:09:22.951 --> 00:09:28.566 I've benefited a lot more from the ADA than lots of other people 00:09:28.566 --> 00:09:32.298 that don't have those kinds of privileges. 00:09:32.981 --> 00:09:40.265 I think for instance about how the ADA is designed, really 00:09:40.265 --> 00:09:44.039 to promote what you'd think of as equality of opportunity, 00:09:44.835 --> 00:09:52.406 meaning that everybody has an equal opportunity to compete within the economic 00:09:52.406 --> 00:10:02.194 life of the United States, and so, it allows you to enter into the workforce, 00:10:02.194 --> 00:10:05.282 and enter into the educational system, and so on and so forth 00:10:05.282 --> 00:10:06.455 then compete. 00:10:06.455 --> 00:10:12.347 But what it doesn't do is it doesn't address any of the other advantages 00:10:12.347 --> 00:10:21.043 or disadvantages that intersect with ableism. So that's sort of something 00:10:21.043 --> 00:10:25.348 that is I think, a real problem, with the ADA. 00:10:25.882 --> 00:10:30.382 I'm a well-educated person, I have a master's degree and a Ph.D. 00:10:31.519 --> 00:10:39.144 and that, I don't think would've been available to me as easily as it was 00:10:39.144 --> 00:10:43.984 if I didn't have these other privileges that I do have, 00:10:43.984 --> 00:10:47.822 that the ADA doesn't do anything to address, it just sort of treats 00:10:47.822 --> 00:10:52.637 all disabled people as if they were the same, and as if the only thing 00:10:52.637 --> 00:10:57.009 they have to deal with is structural ableism, and that's just not true, right? 00:10:58.335 --> 00:11:07.613 I think another thing about disability that the ADA doesn't address 00:11:07.613 --> 00:11:19.373 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 vocary head councilor 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 disability 99:59:59.999 --> 99:59:59.999 that I have, my family's resources and my skin color and gender and all those things, 99:59:59.999 --> 99:59:59.999 it's very likely that the rehab councilor would've said, "You can take the bus," 99:59:59.999 --> 99:59:59.999 right? "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 investment 99:59:59.999 --> 99:59:59.999 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 point to in a very concrete way in which the ADA has helped, 99:59:59.999 --> 99:59:59.999 is when it comes to healthcare rationing. 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. with disabilities such as deafness, and so on.