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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, 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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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

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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 oriented school

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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 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, 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 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

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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,
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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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 
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 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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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 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 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 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 gender 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 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 are 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 virus with treatment

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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 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.

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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 an important thing

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it's 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. 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 different

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reproductive technologies 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.
with disabilities such as deafness, and so on.