9:59:59.000,9:59:59.000
Hi,my name is Joseph Scamardo and I am an [br]assistant professor of philosophy

9:59:59.000,9:59:59.000
and associate Director of the Institute in Public Affairs

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at San Diego State University

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I specialized in philosophy of disability and[br]bioethics.

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I also identify as disabled, I have a spinal cord injury as well as a rare kind of dwarfism

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So you get two for the price of one with me

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So, my first memory of discrimination was, well, it's hard to say.

9:59:59.000,9:59:59.000
I have lots of memories as far as the experience of stigma

9:59:59.000,9:59:59.000
or bigotry, mostly around my dwarfism

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and so, you know I have lots of early memories

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around that with children staring and laughing and that sort of thing

9:59:59.000,9:59:59.000
from a very young age.

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Then as far as sort of a more systematic discrimination that sort of excluded me from something

9:59:59.000,9:59:59.000
that I wanted to do,

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I had a pretty good experience as a child,

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mostly because my parents really did a lot to make sure that I was included

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I can remember being in boy scouts and cub scouts when I was a kid

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and my father, really doing a lot with me

9:59:59.000,9:59:59.000
to ensure that the inclusion of my disability--

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You know going on camping trips with me

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and sort of acting as a personal attendant

9:59:59.000,9:59:59.000
kinda thing to make sure that I was able

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to go and participate,

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and that sort of thing.

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And so the first real experience

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of exclusion that I can remember

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happened when it was time

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to go to high school.

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I had gone to the public schools in my town

9:59:59.000,9:59:59.000
in my town up until the 8th grade

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and then when it came to high school,

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I was supposed to go to the same

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private religiously oriented school

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that my older siblings went to

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and I took the entrance exam and

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even got a small scholarship to go and everything,

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but it didn't have an elevator,

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and so I used a motorized scooter

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to get around, and it was

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going to be impossible for me to

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attend that school, because there was no

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elevator. Now this was actually

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after the passage of the ADA,

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but because it was

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a religiously oriented school,

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it was exempt from the requirements

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of the ADA.

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And so, I didn't have any leverage with

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that law.

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To be able to get them

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to make accommodations for me

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so I ended up going to the public school

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in my town, which actually, personally,

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I was pretty happy about anyway,

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because that's where all my friends

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were going.

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But it still sort of clued me into the fact that

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not everything is accessible,

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not everything is designed for me and that

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this was going to be something

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I was gonna have to figure out throughout

9:59:59.000,9:59:59.000
my life.

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As far as

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remembering the ADA and its ()

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and that sort of thing,

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I was pretty young when it was passed,

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I was sometimes referred to as part of the

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ADA generation, which means that

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I grew up with the ADA mostly,

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I was born in 1982,

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so I was 8 or 9 years old when the ADA

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passed,

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and so I didn't really have

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any kind of recollection of, "Aha!"

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That's--Of the moment that it passed.

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And the recall of where I was at the time

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or anything like this,

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but I do remember my father explaining

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it to me, around the time of my

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start of high school.

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When I experienced this with that

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private catholic school, and having that

9:59:59.000,9:59:59.000
sort of systematic discrimination experience

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It explained that public schools,

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and other kinds of public places

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were accessible to me because of the ADA

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and that there was this law that said

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that things had to be accessible to people

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who use wheelchairs, and people who use

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motorized scooters like I did at the time.

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And so, that was my first awareness

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of the ADA, as well as my first awareness

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of discrimination, which is kind of cool,

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I think?

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Because it was neat to have

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that experience of,

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"Okay, well, this is something that's[br]going to be a challenge for you,

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and here's how you're protected,[br]and here's how you can do something

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about it." [br]And so in a way, it was this sort of,

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my awakening into advocacy as well.

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Now, as far as the difference that the [br]ADA has made in my life,

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or the life of others, [br]I think that it's been, of course

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an incredibly important law that has [br]opened up all sorts of opportunities

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for people, everything from public [br]transportation, to be able to move around

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in your community, the homestead decision[br]is based on ADA, which says that people

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need to be--when they need any kind of [br]() from care,

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they need to be served in the least [br]restrictive environment, meaning that

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you can't just institutionalize or[br]warehouse somebody because it's more

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convenient for you, you need to make sure[br]that they're able to live in the community

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or somewhere that is going to be best [br]for them.

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What else do the ADA do?[br]Just the ability to get an education,

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the ability to get a job, all of these[br]things, for me and for others,

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were sort of caused by the ADA and I can't[br]really imagine what it was like

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prior to the ADA, honestly.

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I mean, I can imagine it I guess, but [br]I'm sure glad that I didn't have to

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experience it.

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The ADA makes a difference in a wide range[br]of personal experiences

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and also a wide range of [br]disability politics issues.

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So, my personal experience that I think [br]most recently has been impacted by the ADA

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has been my ability to live an [br]independent life with my two kids.

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I think prior to the ADA, it would've [br]been much harder to do that.

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Raising kids means that I have to go into[br]lots of different public spaces and do

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different things that I might not have[br]been 'required' to do, if you will,

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professionally, or just sort of[br]in everyday life, if I didn't have them.

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So going to the zoo, or going to the[br]grocery store, for that last minute item

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or you know, just whatever it might be, [br]I think that, you know--

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opening up the daycare centers, and so on[br]and so forth.

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The ADA sort of opened all of that up to[br]me, as a wheelchair user

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and so, that's where it's made a big [br]personal impact in my life recently.

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Now, I think that the one thing that [br]I can sort of speak to, professionally,

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about the ADA and its impact or [br]lack of impact is probably, two-fold:

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One, is the ways in which my privilege [br]as a physically disabled--

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there's a disability hierarchy of course,[br]and so physical disability

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is usually at the top of that hierarchy, [br]with psychiatric disabilities

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and intellectual developmental [br]disabilities,

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sort of lower down on the hierarchy.

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And so, as a physically disabled, [br]cisgender, heterosexual white guy,

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I've benefited a lot more from the ADA [br]than lots of other people that don't have

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those kinds of privileges.

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I think for instance about how the ADA [br]is designed, really

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to promote what you'd think of [br]as equality of opportunity,

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meaning that everybody has an equal [br]opportunity to compete within the economic

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life of the United States, and so, [br]it allows you to enter into the workforce,

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and enter into the educational system, [br]and so on and so forth

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then compete.

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But what it doesn't do is it doesn't[br]address any of the other advantages

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or disadvantages that intersect with [br]ableism. So that's sort of something

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that is I think, a real problem, with [br]the ADA.

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I'm a well-educated person, I have a [br]master's degree and a Ph.D.

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and that, I don't think would've been [br]available to me as easily as it was

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if I didn't have these other privileges [br]that I do have,

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that the ADA doesn't do anything[br]to address, it just sort of treats

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all disabled people as if they were [br]the same, and as if the only thing

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they have to deal with is structural [br]ableism, and that's just not true, right?

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I think another thing about ()[br]that the ADA doesn't address

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is economics, in that, I think that [br]despite the ability to compete,

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a lot of disabled people still live in[br]extreme poverty, because of other

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things that make it impossible for them [br]to compete,

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other than just their disability.

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And so, the real sad part to me about that[br]is you look at other systems

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that are designed to help disabled people [br]get out of poverty,

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and even they don't recognize the way that[br]privilege operates in these contexts.

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So, for instance, [br]the vocational rehab system.

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I've benefited greatly from the vocational [br]rehab system so I don't want to just

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sit here and talk smack on it, right?

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The vocational rehab system has helped me [br]get a van that I could drive,

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so I could get back and forth from

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my place of employment, from school,[br]which was huge, right?

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But the only reason why I had access[br]to that van was:

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A. Because I could afford the van itself,[br]which not a lot of disabled people can do,

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especially if they don't ()[br]and

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B. Because the vocary head councilor[br]thought

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that I was worth the investment right?

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Someone who didn't have the advantages[br]that I had, as far as the kind of disability

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that I have, my family's resources and my [br]skin color and all those things,

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it's very likely that the rehab councilor[br]would've said, "You can take the bus,"

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right? "We're not going to invest all of[br]this money into helping

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you learn how to drive."

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Because they wouldn't have believed that[br]they would get this return on their investment

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that the person would be able to get[br]a well paying job,

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and so on and so forth, [br]and so, I think that that's also

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a big issue that the ADA doesn't address,[br]is this kind of intersectionality

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that gives some disabled people [br]advantages within even the system

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that is designed to help them, and other[br]people, of course, disadvantages, which is

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a real issue.

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Now, as far as my area of expertise, [br]Bioethics, there's definitely been some

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ways in which the ADA has helped greatly,[br]and other ways

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in which it hasn't really done much.

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So I'll start with the positivity, right?[br]We'll start with the good news.

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One way in which I think, I can point point[br]to in a very concrete way in which the ADA has helped,

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is when it comes to healthcare rationing.

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The issue of healthcare in the United [br]States of course is a very hot button topic

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and it's hot because there is a perceived[br]lack of resources--There's more need

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than there is supply for healthcare.

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And so, when we talk about expanding [br]healthcare to a larger number of people,

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without also expanding the resources that[br]are being devoted to healthcare,

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then that's gonna be a real problem, [br]because some people aren't going to get

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as much as they need, right?

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You're going to have to sort of budget it,[br]if you will.

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Or in the terms of bioethics, [br]ration healthcare.

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Now this proved to be an issue because

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when it was done on smaller scale, [br]for instance the state of Oregon,

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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

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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.

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And so, as they did this,

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it became apparent that a lot of [br]disabled people

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were being rationed out of [br]the healthcare system.

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That a lot of things were not being [br]covered for disabled folks

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that should be.

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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

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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.

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And so, that's of course very different[br]because something like needing

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an assistive device like a wheelchair or[br]needing help dressing and bathing

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or having these () that would've meant [br]that people would be rationed out

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of these protocols,