vimeo.com/.../436988743

Hi,my name is Joseph Scamardo and I am an
assistant professor of philosophy

and associate Director of the
Institute in Public Affairs

at San Diego State University

I specialized in philosophy of disability
and bioethics.

I also identify as disabled.

I have a spinal cord injury

as well as a rare kind of dwarfism, so

you get two for the price of one with me

So, my first memory of discrimination was,

well, it's hard to say...

I have lots of memories as far as

the experience of stigma or bigotry,

mostly around my dwarfism,

and so, you know,

I have lots of early memories around that

with children staring and laughing

and that sort of thing from a
very young age.

Then as far as, sort of

a more systematic discrimination

that sort of excluded me from something

that I wanted to do,

I had a pretty good experience as a child,

mostly because my parents really did a lot

to make sure that I was included

I can remember being in boy scouts

and cub scouts when I was a kid

and my father, really doing a lot with me

to ensure that the inclusion
of my disability--

You know going on camping trips with me

and sort of acting as a personal attendant

kinda thing to make sure that I was able

to go and participate,

and that sort of thing.

And so the first real experience

of exclusion that I can remember

happened when it was time

to go to high school.

I had gone to the public schools

in my town up until through the 8th grade

and then when it came to high school,

I was supposed to go to the same

private religiously oriented school

that my older siblings went to

and I took the entrance exam and even got

a small scholarship to go and everything,

but it didn't have an elevator,

and so I used a motorized scooter

to get around, and it was

going to be impossible for me to

attend that school, because there was no

elevator. Now this was actually

after the passage of the ADA,

but because it was

a religiously oriented school,

it was exempt from the requirements

of the ADA.

And so, I didn't have any leverage with

that law.

To be able to get them

to make accommodations for me

so I ended up going to the public school

in my town, which actually, personally,

I was pretty happy about anyway,

because that's where all my
friends were going.

But it still sort of clued me in

to the fact that...

not everything is accessible,

not everything is designed for me and that

this was going to be something

I was gonna have to figure out

throughout my life.

As far as remembering the ADA

and sort of its passage

and that sort of thing,

I was pretty young when it was passed,

I was sometimes referred to as part of the

ADA generation, which means that

I grew up with the ADA mostly,

I was born in 1982,

so I was 8 or 9 years old when the ADA

passed, and so I don't really have

any kind of recollection of, "Aha!"

That's the moment that it passed.

And the recall of where I was at the time

or anything like this,

but I do remember my father explaining

it to me, around the time of my

start of high school.

When I experienced this with that

private catholic school, and having that

sort of systematic discrimination
experience,

it explained that public schools,

and other kinds of public places

were accessible to me because of the ADA

and that there was this law that said

that things had to be accessible to people

who use wheelchairs, and

motorized scooters like I did at the time.

And so, that was my first awareness

of the ADA, as well as my first awareness

of discrimination, which is kind of cool,
I think?

Because it was neat to have

that experience of, "Okay, well,

this is something that's
going to be a challenge for you,

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

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

my awakening into advocacy as well.

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

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

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

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

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

need to be--when they need any kind of
long time care,

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

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

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

or somewhere that is going to be best
for them.

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

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

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

prior to the ADA, honestly.

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

experience it.

The ADA makes a difference in a wide range
of personal experiences

and also a wide range of
disability politics issues.

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

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

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

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

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

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

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

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

opening up the daycare centers, and so on
and so forth.

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

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

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

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

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

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

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

and intellectual developmental
disabilities,

are sort of lower down on the hierarchy.

And so, as a physically disabled,
cisgender, heterosexual white guy,

I've benefited a lot more from the ADA
than lots of other people

that don't have those kinds of privileges.

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

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

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

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

and enter into the educational system,
and so on and so forth

then compete.

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

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

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

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

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

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

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

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

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

I think another thing about disability
that the ADA doesn't address

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

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

things that make it impossible for them
to compete,

other than just their disability.

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

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

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

So, for instance,
the vocational rehab system.

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

sit here and talk smack on it, right?

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

so I could get back and forth from

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

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

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

especially if they aren't
working yet and

B. Because the vocary head councilor
thought

that I was worth the investment right?

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

that I have, my family's resources and my
skin color and gender and all those things,

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

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

you learn how to drive."

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

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

and so on and so forth,
and so, I think that that's also

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

that gives some disabled people
advantages within even the system

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

a real issue.

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

ways in which the ADA has helped greatly,
and other ways

in which it hasn't really done much.

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

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

is when it comes to healthcare rationing.

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

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

than there is supply for healthcare.

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

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

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

as much as they need, right?

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

Or in the terms of bioethics,
ration healthcare.

Now this proved to be an issue because

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

after the passage of the ADA--
I'm not sure exactly on the timeline,

I'm not a historian--but the state of
Oregon expanded their publicly provided

healthcare to a larger number of people,
and as they did that, they needed to

make sure that they had a way of
prioritizing what was covered

and what was not covered.

And so, as they did this,

it became apparent that a lot of
disabled people

were being rationed out of
the healthcare system.

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

that should be.

And so, there was a series of lawsuits
that were brought against

the state of Oregon, that basically
said that, "You couldn't discriminate

against disabled people and not
provide them with healthcare,

based on their disability."

That you couldn't sort of say,

"Well, this person isn't going to get
very much bang for their buck,

they're not gonna end up being healthy
anyway, 'cause they're still going

to be disabled, so we're not going to give
them this treatment option."

Right? And so that was a big win
within bioethics

that was a direct result of the ADA.

More recently,
we've had a similar thing pop up

because of the COVID-19 pandemic.

Specifically, there are what are called
"Emergency Healthcare Protocols"

that are being developed for hospital
systems and states that anticipate

needing more intensive care unit beds,
ventilators and so on and so forth,

that aren't actually available.

And so we need some way of figuring out
who gets the ventilator,

who gets the Intensive Care Unit bed,

and so on and so forth,
as the pandemic increases and goes on.

And so there were some
protocols that were developed

that were very discriminatory
against disabled people.

There was one in Alabama specifically,
that said that anybody

with an intellectual disability
or with dementia was going to be

deprioritized from getting these
life-saving resources if they got COVID-19.

And there was one in Washington state,
that was pretty discriminatory against

disabled folks that said that
if you had a disability

that meant that even after treatment
you are still going to be disabled,

that you would be deprioritized from
getting the life-saving, life support

treatment for COVID-19.

So there was a variety of these all over
the United States

that were really problematic and
that explicitly were discriminating

against disabled people when it came to
getting treatment for COVID

and so in response, there were some folks
from protection and advocacy agencies,

which are sort of these--
Disability Rights California is one,

and each state has protection and advocacy
agencies that are federally funded,

non-profit law firms that protect the
rights of disabled people and so they

sued these states and these hospital
systems and got the federal government to

provide guidelines for treatment ration
protocols that basically say

that you can't discriminate against
disabled people in this way.

That the only time that you can withhold
treatment for COVID-19 is if there is

sort of a very clear way in which the
disability means that person would not

benefit from the treatment, that, you know
they have the kind of disability

that would make it very, very unlikely
that they would survive the virus

even with some kind of ventilator or
intensive care situation.

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

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

or having these things that would've meant
that people would be rationed out

of these protocols...

So of course this is a really good thing that
these protocols are changed because

there were a lot of them that would have
rationed people out

for reasons that had nothing to do with whether or not
they would survive the virus with treatment

So whether you use a wheelchair,
or need a personal attendant for things

like dressing and bathing,
whether you have an intellectual disability.

These are reasons that were being used to
deny people treatment for COVID-19 that

have nothing to do with whether or not
they would survive the disease.

This advocacy efforts that were based on
the American with Disabilities Act

sort of made that illegal to do,
which is of course an important thing

it's literally saved peoples lives presumably.

So that the good news as far as my field
of work and the ways of which ADA has

made an impact, but of course that isn't
the only story. There are lots of ways in which

bioethics can and has been discriminatory
towards disabled people in ways that isn't

addressed by the ADA and that can't really
be addressed by the ADA because of the way

it's written and the kinds of problems
it was designed to solve.

For instance, there is a lot of controversy
over the development of different

reproductive technologies that are designed to
prevent the birth of disabled children.

With intellectual disabilities,
with down syndrome,

with disabilities like mine, dwarfism.
with disabilities such as deafness, and so on.