WEBVTT 99:59:59.999 --> 99:59:59.999 Hi,my name is Joseph Scamardo and I am an assistant professor of philosophy 99:59:59.999 --> 99:59:59.999 and associate Director of the Institute in Public Affairs 99:59:59.999 --> 99:59:59.999 at San Diego State University 99:59:59.999 --> 99:59:59.999 I specialized in philosophy of disability and bioethics. 99:59:59.999 --> 99:59:59.999 I also identify as disabled, I have a spinal cord injury as well as a rare kind of dwarfism 99:59:59.999 --> 99:59:59.999 So you get two for the price of one with me 99:59:59.999 --> 99:59:59.999 So, my first memory of discrimination was, well, it's hard to say. 99:59:59.999 --> 99:59:59.999 I have lots of memories as far as the experience of stigma 99:59:59.999 --> 99:59:59.999 or bigotry, mostly around my dwarfism 99:59:59.999 --> 99:59:59.999 and so, you know I have lots of early memories 99:59:59.999 --> 99:59:59.999 around that with children staring and laughing and that sort of thing 99:59:59.999 --> 99:59:59.999 from a very young age. 99:59:59.999 --> 99:59:59.999 Then as far as sort of a more systematic discrimination that sort of excluded me from something 99:59:59.999 --> 99:59:59.999 that I wanted to do, 99:59:59.999 --> 99:59:59.999 I had a pretty good experience as a child, 99:59:59.999 --> 99:59:59.999 mostly because my parents really did a lot to make sure that I was included 99:59:59.999 --> 99:59:59.999 I can remember being in boy scouts and cub scouts when I was a kid 99:59:59.999 --> 99:59:59.999 and my father, really doing a lot with me 99:59:59.999 --> 99:59:59.999 to ensure that the inclusion of my disability-- 99:59:59.999 --> 99:59:59.999 You know going on camping trips with me 99:59:59.999 --> 99:59:59.999 and sort of acting as a personal attendant 99:59:59.999 --> 99:59:59.999 kinda thing to make sure that I was able 99:59:59.999 --> 99:59:59.999 to go and participate, 99:59:59.999 --> 99:59:59.999 and that sort of thing. 99:59:59.999 --> 99:59:59.999 And so the first real experience 99:59:59.999 --> 99:59:59.999 of exclusion that I can remember 99:59:59.999 --> 99:59:59.999 happened when it was time 99:59:59.999 --> 99:59:59.999 to go to high school. 99:59:59.999 --> 99:59:59.999 I had gone to the public schools in my town 99:59:59.999 --> 99:59:59.999 in my town up until the 8th grade 99:59:59.999 --> 99:59:59.999 and then when it came to high school, 99:59:59.999 --> 99:59:59.999 I was supposed to go to the same 99:59:59.999 --> 99:59:59.999 private religiously oriented school 99:59:59.999 --> 99:59:59.999 that my older siblings went to 99:59:59.999 --> 99:59:59.999 and I took the entrance exam and 99:59:59.999 --> 99:59:59.999 even got a small scholarship to go and everything, 99:59:59.999 --> 99:59:59.999 but it didn't have an elevator, 99:59:59.999 --> 99:59:59.999 and so I used a motorized scooter 99:59:59.999 --> 99:59:59.999 to get around, and it was 99:59:59.999 --> 99:59:59.999 going to be impossible for me to 99:59:59.999 --> 99:59:59.999 attend that school, because there was no 99:59:59.999 --> 99:59:59.999 elevator. Now this was actually 99:59:59.999 --> 99:59:59.999 after the passage of the ADA, 99:59:59.999 --> 99:59:59.999 but because it was 99:59:59.999 --> 99:59:59.999 a religiously oriented school, 99:59:59.999 --> 99:59:59.999 it was exempt from the requirements 99:59:59.999 --> 99:59:59.999 of the ADA. 99:59:59.999 --> 99:59:59.999 And so, I didn't have any leverage with 99:59:59.999 --> 99:59:59.999 that law. 99:59:59.999 --> 99:59:59.999 To be able to get them 99:59:59.999 --> 99:59:59.999 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 99:59:59.999 --> 99:59:59.999 were going. 99:59:59.999 --> 99:59:59.999 But it still sort of clued me into 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 throughout 99:59:59.999 --> 99:59:59.999 my life. 99:59:59.999 --> 99:59:59.999 As far as 99:59:59.999 --> 99:59:59.999 remembering the ADA and its () 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 was 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 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 so I was 8 or 9 years old when the ADA 99:59:59.999 --> 99:59:59.999 passed, 99:59:59.999 --> 99:59:59.999 and so I didn'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--Of 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 having that 99:59:59.999 --> 99:59:59.999 sort of systematic discrimination experience 99:59:59.999 --> 99:59:59.999 It explained that public schools, 99:59:59.999 --> 99:59:59.999 and other kinds of public places 99:59:59.999 --> 99:59:59.999 were accessible to me because of the ADA 99:59:59.999 --> 99:59:59.999 and that there was this law that said 99:59:59.999 --> 99:59:59.999 that things had to be accessible to people 99:59:59.999 --> 99:59:59.999 who use wheelchairs, and people who use 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 awareness 99:59:59.999 --> 99:59:59.999 of the ADA, as well as my first awareness 99:59:59.999 --> 99:59:59.999 of discrimination, which is kind of cool, 99:59:59.999 --> 99:59:59.999 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, 99:59:59.999 --> 99:59:59.999 "Okay, well, 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 for people, everything from public transportation, to be able to move around 99:59:59.999 --> 99:59:59.999 in 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 () from 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 get 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 disability politics issues. 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 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 Raising kids means that I have to go into lots of different public spaces and do 99:59:59.999 --> 99:59:59.999 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 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 that don't have 99:59:59.999 --> 99:59:59.999 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 the economic 99:59:59.999 --> 99:59:59.999 life of the United States, and so, it allows you to enter into the workforce, 99:59:59.999 --> 99:59:59.999 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 () 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 don't () 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 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 a parent 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."