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.