0:00:00.000,0:00:05.734 Hi,my name is Joseph Scamardo and I am an [br]assistant professor of philosophy 0:00:05.734,0:00:08.638 and associate Director of the [br]Institute in Public Affairs 0:00:08.638,0:00:10.670 at San Diego State University 0:00:11.912,0:00:15.942 I specialized in philosophy of disability[br]and bioethics. 0:00:17.474,0:00:18.884 I also identify as disabled. 0:00:18.884,0:00:22.010 I have a spinal cord injury 0:00:22.010,0:00:24.961 as well as a rare kind of dwarfism, so 0:00:24.961,0:00:27.398 you get two for the price of one with me 0:00:28.874,0:00:37.014 So, my first memory of discrimination was, 0:00:37.517,0:00:40.687 well, it's hard to say... 0:00:43.543,0:00:47.313 I have lots of memories as far as 0:00:47.313,0:00:51.840 the experience of stigma or bigotry, 0:00:51.840,0:00:54.896 mostly around my dwarfism, 0:00:54.896,0:00:56.368 and so, you know, 0:00:56.368,0:00:59.845 I have lots of early memories around that 0:00:59.845,0:01:03.521 with children staring and laughing 0:01:03.521,0:01:07.567 and that sort of thing from a [br]very young age. 0:01:10.325,0:01:13.185 Then as far as, sort of 0:01:13.185,0:01:15.165 a more systematic discrimination 0:01:15.165,0:01:18.129 that sort of excluded me from something 0:01:18.129,0:01:20.580 that I wanted to do, 0:01:22.128,0:01:26.158 I had a pretty good experience as a child, 0:01:26.164,0:01:30.794 mostly because my parents really did a lot 0:01:30.794,0:01:33.934 to make sure that I was included 0:01:33.934,0:01:36.765 I can remember being in boy scouts 0:01:36.765,0:01:38.759 and cub scouts when I was a kid 0:01:38.759,0:01:42.416 and my father, really doing a lot with me 0:01:42.416,0:01:47.103 to ensure that the inclusion[br]of my disability-- 0:01:48.374,0:01:50.634 You know going on camping trips with me 0:01:50.634,0:01:52.909 and sort of acting as a personal attendant 0:01:52.909,0:01:56.028 kinda thing to make sure that I was able 0:01:56.028,0:01:57.988 to go and participate, 0:01:57.988,0:02:00.844 and that sort of thing. 0:02:00.844,0:02:03.243 And so the first real experience 0:02:03.243,0:02:05.338 of exclusion that I can remember 0:02:05.338,0:02:07.709 happened when it was time 0:02:07.709,0:02:09.366 to go to high school. 0:02:09.366,0:02:11.200 I had gone to the public schools 0:02:11.200,0:02:13.968 in my town up until through the 8th grade 0:02:13.968,0:02:16.991 and then when it came to high school, 0:02:17.588,0:02:20.598 I was supposed to go to the same 0:02:21.100,0:02:25.160 private religiously oriented school 0:02:25.160,0:02:27.523 that my older siblings went to 0:02:27.523,0:02:30.250 and I took the entrance exam and even got 0:02:30.250,0:02:33.251 a small scholarship to go and everything, 0:02:33.251,0:02:35.892 but it didn't have an elevator, 0:02:35.892,0:02:39.764 and so I used a motorized scooter 0:02:39.764,0:02:42.529 to get around, and it was 0:02:42.529,0:02:44.317 going to be impossible for me to 0:02:44.317,0:02:47.628 attend that school, because there was no 0:02:47.628,0:02:49.672 elevator. Now this was actually 0:02:49.672,0:02:51.641 after the passage of the ADA, 0:02:52.575,0:02:54.937 but because it was 0:02:54.937,0:02:57.524 a religiously oriented school, 0:02:57.524,0:02:59.996 it was exempt from the requirements 0:02:59.996,0:03:01.545 of the ADA. 0:03:01.545,0:03:05.422 And so, I didn't have any leverage with 0:03:05.422,0:03:06.501 that law. 0:03:06.501,0:03:09.483 To be able to get them 0:03:09.483,0:03:11.652 to make accommodations for me 0:03:11.652,0:03:13.854 so I ended up going to the public school 0:03:13.854,0:03:16.276 in my town, which actually, personally, 0:03:16.276,0:03:17.945 I was pretty happy about anyway, 0:03:17.945,0:03:20.287 because that's where all my[br]friends were going. 0:03:20.287,0:03:23.835 But it still sort of clued me in 0:03:23.835,0:03:25.350 to the fact that... 0:03:26.782,0:03:29.222 not everything is accessible, 0:03:29.222,0:03:32.937 not everything is designed for me and that 0:03:32.937,0:03:34.406 this was going to be something 0:03:34.406,0:03:35.862 I was gonna have to figure out 0:03:35.862,0:03:37.417 throughout my life. 0:03:38.214,0:03:43.214 As far as remembering the ADA 0:03:43.214,0:03:44.653 and sort of its passage 0:03:44.653,0:03:46.051 and that sort of thing, 0:03:46.051,0:03:49.218 I was pretty young when it was passed, 0:03:49.218,0:03:51.304 I was sometimes referred to as part of the 0:03:51.304,0:03:54.759 ADA generation, which means that 0:03:54.759,0:03:57.570 I grew up with the ADA mostly, 0:03:58.408,0:04:00.268 I was born in 1982, 0:04:00.268,0:04:02.925 so I was 8 or 9 years old when the ADA 0:04:02.925,0:04:06.670 passed, and so I don't really have 0:04:06.670,0:04:08.398 any kind of recollection of, "Aha!" 0:04:08.398,0:04:12.715 That's the moment that it passed. 0:04:13.489,0:04:16.117 And the recall of where I was at the time 0:04:16.117,0:04:17.806 or anything like this, 0:04:17.806,0:04:19.627 but I do remember my father explaining 0:04:19.627,0:04:24.186 it to me, around the time of my 0:04:24.186,0:04:26.792 start of high school. 0:04:26.792,0:04:28.554 When I experienced this with that 0:04:28.554,0:04:32.676 private catholic school, and having that 0:04:32.676,0:04:37.324 sort of systematic discrimination[br]experience, 0:04:38.531,0:04:41.801 it explained that public schools, 0:04:41.801,0:04:46.254 and other kinds of public places 0:04:46.254,0:04:50.607 were accessible to me because of the ADA 0:04:50.607,0:04:52.888 and that there was this law that said 0:04:52.888,0:04:56.198 that things had to be accessible to people 0:04:56.198,0:04:57.552 who use wheelchairs, and 0:04:57.552,0:05:00.534 motorized scooters like I did at the time. 0:05:00.534,0:05:03.152 And so, that was my first awareness 0:05:03.152,0:05:05.553 of the ADA, as well as my first awareness 0:05:05.553,0:05:09.096 of discrimination, which is kind of cool,[br]I think? 0:05:09.096,0:05:12.335 Because it was neat to have 0:05:12.335,0:05:13.941 that experience of, "Okay, well, 0:05:13.941,0:05:17.260 this is something that's[br]going to be a challenge for you, 0:05:17.260,0:05:20.474 and here's how you're protected,[br]and here's how you can do something 0:05:20.474,0:05:23.929 about it." [br]And so in a way, it was this sort of, 0:05:23.929,0:05:26.896 my awakening into advocacy as well. 0:05:30.465,0:05:34.775 Now, as far as the difference that the [br]ADA has made in my life, 0:05:35.930,0:05:45.996 or the life of others, [br]I think that it's been, of course 0:05:45.996,0:05:52.060 an incredibly important law that has [br]opened up all sorts of opportunities 0:05:52.060,0:05:58.145 for people, everything from public [br]transportation, to be able to move around 0:05:58.145,0:06:06.612 in your community, the homestead decision[br]is based on ADA, which says that people 0:06:06.612,0:06:10.796 need to be--when they need any kind of [br]long time care, 0:06:10.796,0:06:14.468 they need to be served in the least [br]restrictive environment, meaning that 0:06:14.468,0:06:18.388 you can't just institutionalize or[br]warehouse somebody because it's more 0:06:18.388,0:06:24.539 convenient for you, you need to make sure[br]that they're able to live in the community 0:06:24.539,0:06:28.867 or somewhere that is going to be best [br]for them. 0:06:31.650,0:06:39.454 What else do the ADA do?[br]Just the ability to get an education, 0:06:39.454,0:06:46.179 the ability to get a job, all of these[br]things, for me and for others, 0:06:46.179,0:06:52.745 were sort of caused by the ADA and I can't[br]really imagine what it was like 0:06:52.745,0:06:54.627 prior to the ADA, honestly. 0:06:54.627,0:06:58.530 I mean, I can imagine it I guess, but [br]I'm sure glad that I didn't have to 0:06:58.530,0:06:59.691 experience it. 0:07:00.270,0:07:07.891 The ADA makes a difference in a wide range[br]of personal experiences 0:07:07.891,0:07:14.232 and also a wide range of [br]disability politics issues. 0:07:15.516,0:07:28.306 So, my personal experience that I think [br]most recently has been impacted by the ADA 0:07:28.306,0:07:38.149 has been my ability to live an [br]independent life with my two kids. 0:07:39.048,0:07:44.430 I think prior to the ADA, it would've [br]been much harder to do that. 0:07:46.269,0:07:52.084 Raising kids means that I have to go into[br]lots of different public spaces and do 0:07:52.084,0:07:58.437 different things that I might not have[br]been 'required' to do, if you will, 0:07:58.437,0:08:02.124 professionally, or just sort of[br]in everyday life, if I didn't have them. 0:08:02.124,0:08:07.452 So going to the zoo, or going to the[br]grocery store, for that last minute item 0:08:07.452,0:08:16.417 or you know, just whatever it might be, [br]I think that, you know-- 0:08:16.417,0:08:20.417 opening up the daycare centers, and so on[br]and so forth. 0:08:20.417,0:08:24.116 The ADA sort of opened all of that up to[br]me, as a wheelchair user 0:08:24.116,0:08:31.575 and so, that's where it's made a big [br]personal impact in my life recently. 0:08:33.578,0:08:39.698 Now, I think that the one thing that [br]I can sort of speak to, professionally, 0:08:39.698,0:08:49.618 about the ADA and its impact or [br]lack of impact is probably, two-fold: 0:08:49.618,0:09:00.973 One, is the ways in which my privilege [br]as a physically disabled-- 0:09:00.973,0:09:04.256 there's a disability hierarchy of course,[br]and so physical disability 0:09:04.256,0:09:10.624 is usually at the top of that hierarchy, [br]with psychiatric disabilities 0:09:10.624,0:09:13.148 and intellectual developmental [br]disabilities, 0:09:13.148,0:09:15.317 are sort of lower down on the hierarchy. 0:09:15.317,0:09:22.951 And so, as a physically disabled, [br]cisgender, heterosexual white guy, 0:09:22.951,0:09:28.566 I've benefited a lot more from the ADA [br]than lots of other people 0:09:28.566,0:09:32.298 that don't have those kinds of privileges. 0:09:32.981,0:09:40.265 I think for instance about how the ADA [br]is designed, really 0:09:40.265,0:09:44.039 to promote what you'd think of [br]as equality of opportunity, 0:09:44.835,0:09:52.406 meaning that everybody has an equal [br]opportunity to compete within the economic 0:09:52.406,0:10:02.194 life of the United States, and so, [br]it allows you to enter into the workforce, 0:10:02.194,0:10:05.282 and enter into the educational system, [br]and so on and so forth 0:10:05.282,0:10:06.455 then compete. 0:10:06.455,0:10:12.347 But what it doesn't do is it doesn't[br]address any of the other advantages 0:10:12.347,0:10:21.043 or disadvantages that intersect with [br]ableism. So that's sort of something 0:10:21.043,0:10:25.348 that is I think, a real problem, with [br]the ADA. 0:10:25.882,0:10:30.382 I'm a well-educated person, I have a [br]master's degree and a Ph.D. 0:10:31.519,0:10:39.144 and that, I don't think would've been [br]available to me as easily as it was 0:10:39.144,0:10:43.984 if I didn't have these other privileges [br]that I do have, 0:10:43.984,0:10:47.822 that the ADA doesn't do anything[br]to address, it just sort of treats 0:10:47.822,0:10:52.637 all disabled people as if they were [br]the same, and as if the only thing 0:10:52.637,0:10:57.009 they have to deal with is structural [br]ableism, and that's just not true, right? 0:10:58.335,0:11:07.613 I think another thing about disability[br]that the ADA doesn't address 0:11:07.613,0:11:19.373 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 vocary head councilor[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 disability 9:59:59.000,9:59:59.000 that I have, my family's resources and my [br]skin color and gender and all those things, 9:59:59.000,9:59:59.000 it's very likely that the rehab councilor[br]would've said, "You can take the bus," 9:59:59.000,9:59:59.000 right? "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 investment 9:59:59.000,9:59:59.000 that the person would be able to get[br]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 point[br]to in a very concrete way in which the ADA has helped, 9:59:59.000,9:59:59.000 is when it comes to healthcare rationing. 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.