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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.
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I have a spinal cord injury,
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as well as a rare kind of dwarfism, and so
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you get two for the price of one with me.
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So, my first memory of discrimination was,
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well, it's hard to say...
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I have lots of memories as far as
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the experience of stigma or bigotry,
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mostly around my dwarfism,
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and so, you know,
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I have lots of early memories around that
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with children staring and laughing
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and that sort of thing from a
very young age.
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Then as far as, sort of
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a more systematic discrimination
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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
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to make sure that I was included.
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I can remember being in boy scouts
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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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kind of 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
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in my town up until through 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 sort of oriented
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school that my older siblings went to
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and I took the entrance exam and even got
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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 were going.
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But it still sort of clued me in
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to 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
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throughout my life.
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As far as remembering the ADA
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and sort of its passage
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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'm sometimes referred to as part of the
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ADA generation, which means that
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I sort of grew up with the ADA mostly,
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I was born in 1982,
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and so I was 8 or 9 years old when the ADA
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passed, and so I don't really have
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any kind of recollection of, "Aha!"
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That's 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 you know
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having that sort of systematic
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discrimination experience it explained
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that public schools, and other kinds of
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public places were accessible to me
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because of the ADA and that there was
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this law that said that things had to be
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accessible to people
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who use wheelchairs, and
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motorized scooters like I did at the time.
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And so, that was my first sort of
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awareness of the ADA, as well as my first
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awareness of discrimination, which is
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kind of cool. I think?
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Because it was neat to have
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that experience of, "Okay, well,
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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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to people, everything from public
transportation, to be able to move around
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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
long time 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 you know 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 sort of
disability politics issues. Right?
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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 just 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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You know raising kids means that I have to
into lots of different public spaces and
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do 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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are 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
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that don't have 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 sort of the
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economic life of the United States, and
so, it allows you to enter into the
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workforce 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 disability
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 aren't
working yet and
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B. Because the VOC rehab counselor
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
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disability that I have, my family's
resources and my skin color and gender and
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all those things, it's very likely that
rehab counselor would've said,
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"You cant take the bus," right?
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"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
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investment 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
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point to in a very concrete way in which
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the ADA has helped is
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when it comes to healthcare rationing so,
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The issue of healthcare in the United
States of course is a very hot button
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topic and it's hot because there is sort
of perceived lack of resources--
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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 was 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 things that would've
meant that people would be rationed out
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of these protocols...
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So of course this is a really good thing
that these protocols were changed because
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there were a lot of them that would have
rationed people out
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for reasons that had nothing to do with
whether or not they would survive the
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the virus with treatment, Right?
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So whether you use a wheelchair,
or need a personal attendant for things
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like dressing and bathing, whether or not
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you have an intellectual disability
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These are reasons that were being used to
deny people treatment for COVID-19 that
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have nothing to do with whether or not
they would survive the disease. So,
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This advocacy efforts that were based on
the American with Disabilities Act
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sort of made that illegal to do, which
is of course a really important thing it's
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literally saved peoples lives presumably.
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So that the good news as far as my field
of work and the ways of which ADA has
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made an impact, but of course that isn't
the only story.
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There are lots of ways in which
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bioethics can and has been discriminatory
towards disabled people in ways that isn't
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addressed by the ADA and that can't really
be addressed by the ADA because of the way
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it's written and the kinds of problems
it was designed to solve.
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For instance, there is a lot of
controversy over the development of
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different reproductive technologies
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that are designed to
prevent the birth of disabled children.
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With intellectual disabilities,
with down syndrome,
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with disabilities like mine, dwarfism.
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with disabilities like certain kinds of
genetically linked deafness, and so on.
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And so we have an entire industry aimed
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at genetic testing for these kind of
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disabilities and the prevention of the
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birth of children
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with these disabilities with
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selective abortion or, now,
selective implantation,
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which is when you test embryos
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and then pick the one that you want
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to give birth to.
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And then coming down the pipeline
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is CRISPR, which will be a technology
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that doesn't select a particular embryo
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but rather modifies the embryo itself.
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It sort of-- what's sometimes referred to
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as gene editing or genetic engineering.
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And that isn't a reality yet, but
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scientists are certainly working toward
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the use of that technology to prevent
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disability.
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Now it's something that of course makes
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a lot of people with these disabilities
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very uncomfortable because of
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the message that it might send, right?
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It might send the message that,
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"People like you aren't wanted
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in the world." Right? Meaning "we don't
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need more like you."
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And so, it is sorta of based on, largely,
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stigma around disability, around ideas
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about quality of life with disabled people
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that, "if you have a disability, you must
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be miserable, and so we must do everything
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we can to prevent more like you from
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coming into existence," and so on and so
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forth.
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Now, this is a real problem because,
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of course, it comes into conflict with
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values a lot of people hold around
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reproductive liberty, around women being
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able to make choices for themselves
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about their own bodies, and about their
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own lives, and so on and so forth.
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And so, this has created a tension between
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disability bioethics and other kinds of
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progressive groups that are wanting to
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promote freedom and justice for everybody.
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And so the ADA, you know, isn't designed
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to handle something like this because
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it's not about overt discrimination
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against people, but rather it's about
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attitudes about beliefs, about disability,
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that drive personal decisions.
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And so it's really really hard to address
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this as a policy problem because you know
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people aren't going to be very keen on
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restricting the kind of decisions women
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and families can make about reproduction.
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But at the same time, we want to promote
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good beliefs, and true beliefs, and good
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attitudes about disability, and the ways
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in which it contributes to the world,
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in the ways in which disabilities form
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a diversity that's important that we
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don't want to eliminate.
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And so that's, I think, a task for folks
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like myself and bioethics that are writing
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about these issues, that are trying to
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make arguments that are able to walk this
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very thin line between saying,
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"Okay, you know disability is the kind of
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thing that is not a horrible life sentence
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of misery, and so we don't want to make
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that assumption and we don't want to base
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the technologies that we develop or the
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decisions that we make on that assumption.
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But at the same time, we don't want to
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tell people what they can or can't do
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with their bodies."
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I think that, if I were to pick one thing
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to change, to try to give people with
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disabilities more access, and to remove
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remove barriers to a life of flourishing
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and opportunity for disabled people.
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I think I would go back to my birth story,
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my origin story if you will.
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When I was born, the doctor that delivered
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me looked at my body and he had never
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seen somebody with my kind of Dwarfism
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before, and didn't know much about it,
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and he told my parents,
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"he's not gonna do much, he's not gonna be
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able to walk, he's not gonna be able
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to talk, he's not gonna be able to go to
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school," and so on and so forth.
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"You should place him in a
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state institution and
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go about your lives, forget about him."
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And they didn't do that, obviously.
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They chose not to do that.
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They took me home, they raised me
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like their kid because I was their kid.
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And so I think a lot about how different
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my life would be if I had been
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institutionalized from birth, as that
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doctor recommended.
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And then I think about how these
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institutions still exist.
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That when I was-- before I entered
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academia full-time, I worked as an
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advocate for a protection and advocacy
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agency in the state of Texas, where they
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have what are called,
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"state supported living centers,"
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which are-- sort of a euphemism for
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state institutions where they warehouse
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people with intellectual disabilities and
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psychiatric disabilities of various kinds.
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Basically the kind of place that the
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doctor was recommending my parents
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to put me. They still exist, almost forty
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year later. This is not okay.
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And it's not just these kind of places
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that are really problematic.
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Nursing homes, there's lots of disabled
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people in nursing homes.
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Even some group home systems
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that are corporate, that are designed to
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make money, and not to make sure that
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people living there are actually living
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good lives, right?
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This is a serious problem when you
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take people and you put them in
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a situation where they don't have control
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the basic decisions of their life:
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what they eat for their meals, when they
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wake up, when they go to bed,
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how they spend their time, what they wear.
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When I was working as an advocate going
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in to the state institutions in Texas,
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I remember sitting in a meeting where it
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was discussed about my clients eating
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habits. How apart of his behavioral
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support plan was that they had his helper
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try to get him to take a sip of water
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between every bite of food that he took
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during meal time. I thought to myself,
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"how absurd!" This is a grown adult
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person that they are trying to micromanage
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down to the very last detail of his life
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and trying to control everything about
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what he does. That's horrific I can't
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imagine living under that kind of
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condition. Where not even being able to
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eat my meals in peace without someone
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telling me what to do and how to do it.
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Right? And so you know I think that this
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lack of control over basic decisions of
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your life is a real problem for a large
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number of disabled people still even you
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know 30 years after the passage of the
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ADA. So if there is one thing that I
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could sort of wave a magic wand and change
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it would be that. It would be developing
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systems where people are truly supported
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to be able to flourish as they are, but
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not controlled. Right? Not told what to
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do and when to do it every moment of their
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lives. Where they can make their own
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decisions and have agency over their own
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life. I think that's what is missing for a
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large number of disabled people still even
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after the ADA. And that we need to do
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something about that. I think that there
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is a few things that we can do.
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First, educate your self on the issues.
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Right? Educate your self on the issues
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beyond just how they effect you. Right?
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I think that within the disability
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movements there is sort of pockets of
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different people doing different things.
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And that's fine. But, I think we need to
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talk to each other more. We need to
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realize that disability issues go beyond
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our limited experience. Right? So we need
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to be aware of the ways in which
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disability disadvantages people
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differently. That the experience of
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disability is not an experience it's many
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experiences. And so, we need to listen to
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each other and hear from each other about
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the ways in which we are suffering and
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hurting. Because, of disability
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discrimination because it looks very
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different between different people. And so
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having a richer fuller understanding
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of the problem I think is the first step.
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Then beyond that sort of talking to people
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about strategies they have and learn from
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each other about you know maybe some
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strategy that works for you know the deaf
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community would work really well for the
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dwarf community and maybe haven't talked
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to each other very well about different
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political strategies to try to get where
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we need in order to live well. And maybe
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we should. Right? So, educate ourselves
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about the struggle of others you know
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because it's important to know and then
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share information and share strategies on
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how to effectively advocate and come
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together and fight together. Right? If you
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show up for someone on issue A that they
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are having then their more likely to show
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up for you on issue B that your having.
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And, so building solidary across the
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movement more effectively recognizing
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the ways in which other oppressions
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intersect with disability and change the
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nature of disability oppression. These
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would be my recommendations of what to do.
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Just basically raising your awareness
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of discrimination beyond just your own
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experience.