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, and 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

kind of 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 sort of 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'm sometimes referred to as part of the

ADA generation, which means that

I sort of grew up with the ADA mostly,

I was born in 1982,

and 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 you know

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 sort of

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

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

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 you know 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 sort of
disability politics issues. Right?

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

has been just 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.

You know raising kids means that I have to
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 sort of 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 VOC rehab counselor
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
rehab counselor would've said,

"You cant 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 to in a very concrete way in which

the ADA has helped is

when it comes to healthcare rationing so,

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

topic and it's hot because there is sort
of 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 was 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 were 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

the virus with treatment, Right?

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

like dressing and bathing, whether or not

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. So,

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

sort of made that illegal to do, which
is of course a really 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 like certain kinds of
genetically linked deafness, and so on.

And so we have an entire industry aimed

at genetic testing for these kind of

disabilities and the prevention of the

birth of children

with these disabilities with

selective abortion or, now,
selective implantation,

which is when you test embryos

and then pick the one that you want

to give birth to.

And then coming down the pipeline

is CRISPR, which will be a technology

that doesn't select a particular embryo

but rather modifies the embryo itself.

It sort of-- what's sometimes referred to

as gene editing or genetic engineering.

And that isn't a reality yet, but

scientists are certainly working toward

the use of that technology to prevent

disability.

Now it's something that of course makes

a lot of people with these disabilities

very uncomfortable because of

the message that it might send, right?

It might send the message that,

"People like you aren't wanted

in the world." Right? Meaning "we don't

need more like you."

And so, it is sorta of based on, largely,

stigma around disability, around ideas

about quality of life with disabled people

that, "if you have a disability, you must

be miserable, and so we must do everything

we can to prevent more like you from

coming into existence," and so on and so

forth.

Now, this is a real problem because,

of course, it comes into conflict with

values a lot of people hold around

reproductive liberty, around women being

able to make choices for themselves

about their own bodies, and about their

own lives, and so on and so forth.

And so, this has created a tension between

disability bioethics and other kinds of

progressive groups that are wanting to

promote freedom and justice for everybody.

And so the ADA, you know, isn't designed

to handle something like this because

it's not about overt discrimination

against people, but rather it's about

attitudes about beliefs, about disability,

that drive personal decisions.

And so it's really really hard to address

this as a policy problem because you know

people aren't going to be very keen on

restricting the kind of decisions women

and families can make about reproduction.

But at the same time, we want to promote

good beliefs, and true beliefs, and good

attitudes about disability, and the ways

in which it contributes to the world,

in the ways in which disabilities form

a diversity that's important that we

don't want to eliminate.

And so that's, I think, a task for folks

like myself and bioethics that are writing

about these issues, that are trying to

make arguments that are able to walk this

very thin line between saying,

"Okay, you know disability is the kind of

thing that is not a horrible life sentence

of misery, and so we don't want to make

that assumption and we don't want to base

the technologies that we develop or the

decisions that we make on that assumption.

But at the same time, we don't want to

tell people what they can or can't do

with their bodies."

I think that, if I were to pick one thing

to change, to try to give people with

disabilities more access, and to remove

remove barriers to a life of flourishing

and opportunity for disabled people.

I think I would go back to my birth story,

my origin story if you will.

When I was born, the doctor that delivered

me looked at my body and he had never

seen somebody with my kind of Dwarfism

before, and didn't know much about it,

and he told my parents,

"he's not gonna do much, he's not gonna be

able to walk, he's not gonna be able

to talk, he's not gonna be able to go to

school," and so on and so forth.

"You should place him in a

state institution and

go about your lives, forget about him."

And they didn't do that, obviously.

They chose not to do that.

They took me home, they raised me

like their kid because I was their kid.

And so I think a lot about how different

my life would be if I had been

institutionalized from birth, as that

doctor recommended.

And then I think about how these

institutions still exist.

That when I was-- before I entered

academia full-time, I worked as an

advocate for a protection and advocacy

agency in the state of Texas, where they

have what are called,

"state supported living centers,"

which are-- sort of a euphemism for

state institutions where they warehouse

people with intellectual disabilities and

psychiatric disabilities of various kinds.

Basically the kind of place that the

doctor was recommending my parents

to put me. They still exist, almost forty

year later. This is not okay.

And it's not just these kind of places

that are really problematic.

Nursing homes, there's lots of disabled

people in nursing homes.

Even some group home systems

that are corporate, that are designed to

make money, and not to make sure that

people living there are actually living

good lives, right?

This is a serious problem when you

take people and you put them in

a situation where they don't have control

the basic decisions of their life:

what they eat for their meals, when they

wake up, when they go to bed,

how they spend their time, what they wear.

When I was working as an advocate going

in to the state institutions in Texas,

I remember sitting in a meeting where it

was discussed about my clients eating

habits. How apart of his behavioral

support plan was that they had his helper

try to get him to take a sip of water

between every bite of food that he took

during meal time. I thought to myself,

"how absurd!" This is a grown adult

person that they are trying to micromanage

down to the very last detail of his life

and trying to control everything about

what he does. That's horrific I can't

imagine living under that kind of

condition. Where not even being able to

eat my meals in peace without someone

telling me what to do and how to do it.

Right? And so you know I think that this

lack of control over basic decisions of

your life is a real problem for a large

number of disabled people still even you

know 30 years after the passage of the

ADA. So if there is one thing that I

could sort of wave a magic wand and change

it would be that. It would be developing

systems where people are truly supported

to be able to flourish as they are, but

not controlled. Right? Not told what to

do and when to do it every moment of their

lives. Where they can make their own

decisions and have agency over their own

life. I think that's what is missing for a

large number of disabled people still even

after the ADA. And that we need to do

something about that. I think that there

is a few things that we can do.

First, educate your self on the issues.

Right? Educate your self on the issues

beyond just how they effect you. Right?

I think that within the disability

movements there is sort of pockets of

different people doing different things.

And that's fine. But, I think we need to

talk to each other more. We need to

realize that disability issues go beyond

our limited experience. Right? So we need

to be aware of the ways in which

disability disadvantages people

differently. That the experience of

disability is not an experience it's many

experiences. And so, we need to listen to

each other and hear from each other about

the ways in which we are suffering and

hurting. Because, of disability

discrimination because it looks very

different between different people. And so

having a richer fuller understanding

of the problem I think is the first step.

Then beyond that sort of talking to people

about strategies they have and learn from

each other about you know maybe some

strategy that works for you know the deaf

community would work really well for the

dwarf community and maybe haven't talked

to each other very well about different

political strategies to try to get where

we need in order to live well. And maybe

we should. Right? So, educate ourselves

about the struggle of others you know

because it's important to know and then

share information and share strategies on

how to effectively advocate and come

together and fight together. Right? If you

show up for someone on issue A that they

are having then their more likely to show

up for you on issue B that your having.

And, so building solidary across the

movement more effectively recognizing

the ways in which other oppressions

intersect with disability and change the

nature of disability oppression. These

would be my recommendations of what to do.

Just basically raising your awareness

of discrimination beyond just your own

experience.