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Hi,my name is Joseph Scamardo and I am an
assistant professor of philosophy
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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
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.
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I have lots of memories as far as the experience of stigma
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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
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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
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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
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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
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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
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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
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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
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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
going to be a challenge for you,
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and here's how you're protected,
and here's how you can do something
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about it."
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
ADA has made in my life,
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or the life of others,
I think that it's been, of course
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an incredibly important law that has
opened up all sorts of opportunities
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for people, everything from public
transportation, to be able to move around
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in your community, the homestead decision
is based on ADA, which says that people
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need to be--when they need any kind of
() from care,
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they need to be served in the least
restrictive environment, meaning that
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you can't just institutionalize or
warehouse somebody because it's more
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convenient for you, you need to make sure
that they're able to live in the community
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or somewhere that is going to be best
for them.
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What else do the ADA do?
Just the ability to get an education,
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the ability to get a job, all of these
things, for me and for others,
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were sort of caused by the ADA and I can't
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
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
of personal experiences
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and also a wide range of
disability politics issues.
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So, my personal experience that I think
most recently has been impacted by the ADA
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has been my ability to live an
independent life with my two kids.
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I think prior to the ADA, it would've
been much harder to do that.
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Raising kids means that I have to go into
lots of different public spaces and do
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different things that I might not have
been 'required' to do, if you will,
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professionally, or just sort of
in everyday life, if I didn't have them.
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So going to the zoo, or going to the
grocery store, for that last minute item
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or you know, just whatever it might be,
I think that, you know--
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opening up the daycare centers, and so on
and so forth.
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The ADA sort of opened all of that up to
me, as a wheelchair user
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and so, that's where it's made a big
personal impact in my life recently.
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Now, I think that the one thing that
I can sort of speak to, professionally,
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about the ADA and its impact or
lack of impact is probably, two-fold:
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One, is the ways in which my privilege
as a physically disabled--
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there's a disability hierarchy of course,
and so physical disability
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is usually at the top of that hierarchy,
with psychiatric disabilities
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and intellectual developmental
disabilities,
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sort of lower down on the hierarchy.
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And so, as a physically disabled,
cisgender, heterosexual white guy,
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I've benefited a lot more from the ADA
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
is designed, really
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to promote what you'd think of
as equality of opportunity,
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meaning that everybody has an equal
opportunity to compete within the economic
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life of the United States, and so,
it allows you to enter into the workforce,
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and enter into the educational system,
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
address any of the other advantages
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or disadvantages that intersect with
ableism. So that's sort of something
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that is I think, a real problem, with
the ADA.
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I'm a well-educated person, I have a
master's degree and a Ph.D.
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and that, I don't think would've been
available to me as easily as it was
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if I didn't have these other privileges
that I do have,
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that the ADA doesn't do anything
to address, it just sort of treats
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all disabled people as if they were
the same, and as if the only thing
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they have to deal with is structural
ableism, and that's just not true, right?
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I think another thing about ()
that the ADA doesn't address
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is economics, in that, I think that
despite the ability to compete,
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a lot of disabled people still live in
extreme poverty, because of other
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things that make it impossible for them
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
is you look at other systems
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that are designed to help disabled people
get out of poverty,
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and even they don't recognize the way that
privilege operates in these contexts.
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So, for instance,
the vocational rehab system.
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I've benefited greatly from the vocational
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
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,
which was huge, right?
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But the only reason why I had access
to that van was:
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A. Because I could afford the van itself,
which not a lot of disabled people can do,
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especially if they don't ()
and
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B. Because the vocary head councilor
thought
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that I was worth the investment right?
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Someone who didn't have the advantages
that I had, as far as the kind of disability
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that I have, my family's resources and my
skin color and all those things,
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it's very likely that the rehab councilor
would've said, "You can take the bus,"
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right? "We're not going to invest all of
this money into helping
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you learn how to drive."
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Because they wouldn't have believed that
they would get this return on their investment
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that the person would be able to get
a well paying job,
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and so on and so forth,
and so, I think that that's also
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a big issue that the ADA doesn't address,
is this kind of intersectionality
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that gives some disabled people
advantages within even the system
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that is designed to help them, and other
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,
Bioethics, there's definitely been some
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ways in which the ADA has helped greatly,
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?
We'll start with the good news.
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One way in which I think, I can point point
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
States of course is a very hot button topic
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and it's hot because there is a perceived
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
healthcare to a larger number of people,
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without also expanding the resources that
are being devoted to healthcare,
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then that's gonna be a real problem,
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,
if you will.
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Or in the terms of bioethics,
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,
for instance the state of Oregon,
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after the passage of the ADA--
I'm not sure exactly on the timeline,
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I'm not a historian--but the state of
Oregon expanded their publicly provided
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healthcare to a larger number of people,
and as they did that, they needed to
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make sure that they had a way of
prioritizing what was covered
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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
disabled people
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were being rationed out of
the healthcare system.
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That a lot of things were not being
covered for disabled folks
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that should be.
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And so, there was a series of lawsuits
that were brought against
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the state of Oregon, that basically
said that, "You couldn't discriminate
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against disabled people and not
provide them with healthcare,
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based on their disability."
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That you couldn't sort of say,
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"Well, this person isn't going to get
very much bang for their buck,
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they're not gonna end up being healthy
anyway, 'cause they're still going
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to be disabled, so we're not going to give
them this treatment option."
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Right? And so that was a big win
within bioethics
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that was a direct result of the ADA.
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More recently,
we've had a similar thing pop up
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because of the COVID-19 pandemic.
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Specifically, there are what are called
"Emergency Healthcare Protocols"
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that are being developed for hospital
systems and states that anticipate
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needing more intensive care unit beds,
ventilators and so on and so forth,
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that aren't actually available.
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And so we need some way of figuring out
who gets the ventilator,
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who gets the Intensive Care Unit bed,
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and so on and so forth,
as the pandemic increases and goes on.
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And so there were some
protocols that were developed
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that were very discriminatory
against disabled people.
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There was one in Alabama specifically,
that said that anybody
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with an intellectual disability
or with dementia was going to be
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deprioritized from getting these
life-saving resources if they got COVID-19.
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And there was one in Washington state,
that was pretty discriminatory against
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disabled folks that said that
if you had a disability
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that meant that even after treatment
you are still going to be disabled,
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that you would be deprioritized from
getting the life-saving, life support
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treatment for COVID-19.
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So there was a variety of these all over
the United States
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that were really problematic and
that explicitly were discriminating
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against disabled people when it came to
getting treatment for COVID
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and so in response, there were some folks
from protection and advocacy agencies,
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which are sort of these--
Disability Rights California is one,
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and each state has protection and advocacy
agencies that are federally funded,
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non-profit law firms that protect the
rights of disabled people and so they
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sued these states and these hospital
systems and got the federal government to
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provide guidelines for treatment ration
protocols that basically say
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that you can't discriminate against
disabled people in this way.
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That the only time that you can withhold
treatment for COVID-19 is if there is
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sort of a very clear way in which the
disability means that person would not
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benefit from the treatment, that, you know
they have the kind of disability
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that would make it very, very unlikely
that they would survive the virus
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even with some kind of ventilator or
intensive care situation.
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And so, that's of course very different
because something like needing
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an assistive device like a wheelchair or
needing help dressing and bathing
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or having these () that would've meant
that people would be rationed out
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of these protocols,