(light music)
- In order to think
about interdisciplinarity
and disability,
I really need to go back
to my own situation,
my own history of education.
So I grew up in a place that
wasn't very sophisticated
and it was of course way before
the Americans with Disabilities Act,
so there was no way,
there was even no concept
of accommodating my own disabilities
in the schools that I went to.
So I was able to do well in some areas
and not in other areas,
and so one of the things
that I was able to do well
and enjoyed very much
in school was to read
because I could read
well, I couldn't type,
I couldn't play musical instruments,
I didn't do very well
in physical education
or a lot of other kinds of fields,
but I could read and I could go to school,
I could get in the door.
And so that was very important for me
and understanding how significant it is
to be able to work in an
environment that welcomed
what we now call human diversity.
Now of course I didn't
understand any of that
when I was going to school,
I was born with a disability very unusual,
an asymmetrical hands but I had
no disability consciousness,
I had no feminist consciousness,
I actually had no consciousness at all
until the women's movement
made me see the whole world
in a different way and I began
to understand at that point
that disability or the human variations
that we call disability
were an appropriate place
or thinking about those human variations,
the identities that we call disability,
were very appropriate to think
about in the same context
as women studies, feminist theory,
and what quaintly was
called women's liberation.
I had no idea that there was
a disability rights movement
going on at the very same time,
so when I entered higher education,
I entered it equipped
to understand disability
and living with disability as an issue
similarly to living with gender
and living within the gender system.
So from the beginning in
thinking about disability
and representations of disability
and the cultural work of
those representations,
I understood that what we
now call interdisciplinarity
was the best way to investigate
those sets of academic questions.
Basically the idea of shaping
the world to fit bodies
rather than shaping
bodies to fit the world,
which is a wonderful kind
of slogan if you will,
and I take much of that from my colleague,
the philosopher and
bioethicist Erik Parens
who is a researcher,
senior researcher at The Hastings Center.
He uses the word shaping very often
and it's what we would call,
in terms of critical theory,
a social constructivist,
understanding of identity formation.
In other words, social constructionism
which came out of sociology
in the late 20th century theoretical turn
told us that identities
and bodies took on meaning
through their interaction
with a social environment.
So critical disability studies developed
from this social
constructivist understanding
of gender and race.
And the emphasis there
is on the interaction
between what I call rather
poetically body and world.
So what we do is take the
meanings out of bodies
understood as lacking or wrong or abnormal
and put the meaning of disability
into the interaction
between bodies, all bodies,
and bodily variations and the world
in which these bodies are embedded.
And what makes disability studies
I think particularly effective
in this critical context
is the importance of the
interface if you will
between bodies understood
as having disabilities
or being disabled having
to fit into worlds
that are built for other kinds of bodies.
That's a wonderful question
and we need to turn again to history
in order to think through
the changes in attitudes
and the changes in the
world that began to happen
starting in the very late
1960s in the United States
and worldwide as a result of
the disability rights movement
which started to put
pressure on policy and on law
and on government in order
to put in place regulations
and changes that would assure
or at least start working
toward disability justice,
disability inclusion,
disability desegregation.
So those early laws
starting for example in 1968
with the federal statute
called the Architectural Barriers Act,
that required federally funded buildings
to become accessible to
people with disabilities.
In 1968, no one had any
idea what that meant,
so what happened was that
ramps, ugly metal ramps,
were fastened on to
the fronts of buildings
and they were thought to, at that time,
ruin the aesthetic value of the buildings,
it was unclear as to who would use them,
how they would operate, it
was a very awkward process
but it was a very important
process to begin with.
So now in 2019, we have
architects and designers
and new buildings working together
to make accessible buildings
or ramped buildings
much more aesthetically pleasing
and aesthetically important
and also much more valuable
and much more usable by everyone.
So that's just one example of
how the world got reshaped.
So what happened then is
after there was an awareness
that people with disabilities
have been kept out of many things,
other kinds of legislation began.
For example, in the early 1970s,
we had inclusion policies
in terms of education.
IDEA came forward and said
"People with disabilities
"have been excluded from education
"and it is now a federal mandate
"that education has to be provided,
"an appropriate and equal education
"needs to be provided for all
students with disabilities,"
so these laird laws and policies
that were basically disaggregation,
integration policies
to assure inclusion,
justice and equal access
and opportunity for
people with disabilities,
kept moving forward and
changing who is in public space
who we are all together.
And these laws and these
changes were also parallel
with the integration if
you will of other groups
who have been kept out of public space
and public institutions.
The more elite the institutions were,
the more exclusive they were,
and the most important contribution
that disability integration
or disability inclusion
depending on how you want
to talk about it offered
is that it changed the
way the world was built
through accessible technologies
that now everyone is able to benefit from
whether these people identify
as people with disabilities
or non-disabled.
I think it's very
important to conceptually
consider disability in
a universalizing way
for several reasons.
First of all, disability
is an identity category,
it's a community into which everyone
will move in and out of over a lifetime
and in that sense, disability
as a category of identity
is probably the most porous
of identity categories
that we recognize when we think
about identity and inclusion
and civil and human rights.
Disability is not a
stable category at all,
as we all I think are aware,
you can understand
yourself and be understood
as non-disabled today
and a bicycle accident
or an illness or a myriad
of things can occur to you
literally in a few moments
which transform your identity category,
both your ascribed and your
achieved identity category
to use the words of
sociology, in a minute.
And I think that porousness
is an important thing
for us to consider when we
think about disability justice.
What I would like to see is wide support
for disability justice,
disability inclusion,
and that's not always the case
because there is a long
history of denying disability
or refusal to recognize disability
because of course disability
discrimination is quite real.
So many people who transition
into disability identity
are very reluctant to
embrace that identity
and often sometimes reluctant to accept
the kinds of policies, the
kinds of changes in the world
that disability inclusion has made.
So by universalizing disability,
I think that we can take
advantage of this strategic move
of making or offering to all people
and understanding and support
for disability justice and inclusion
based on the idea that
this may be you someday.
And that's, I think, a
strategic and important move.
As I began to work on the
meaning making function
of narrative and language
and literature and art
as we do as humanists
and literary scholars,
I began to understand
that I needed to consider
other methods and other disciplines
in order to do the work
of bringing forward
disability justice and inclusion
which is what I understand
part of my mission to be
as a professor and knowledge maker
in the world we live in now.
So I was most interested
and most distressed
by the concept of eugenics
which of course worldwide
and in the United States
has a very particular history.
Eugenics is science, eugenics
was the ascendant science
in the late 19th century
and the first several
decades of the 20th century.
Eugenics was science.
Eugenics is the science of
improving the human race
by controlling who reproduces,
what they reproduce,
and how they reproduce.
And I wanted to bring forward
that history of eugenics
and to think about how and to
make known how eugenic logic
is what I call it
is still a very common practice
in medicine, and in policy,
and in technology development
in our current era.
And in order to do that,
I needed to undertake bioethics as a field
because bioethics as a
field is the enterprise
that can most effectively
address eugenic practice now.
I think we're all aware that knowledge
and the production and
dissemination of knowledge
has become increasingly specialized
in what we might call our modern era.
There is more knowledge,
there's more information,
there are more practitioners
of knowledge making
and dissemination, what we
sometimes call research,
and teaching, and publishing,
then there ever have been.
And with that increasing specialization
is an increasing if you will
balkanization of knowledge
and knowledge practice.
And so, it becomes important for us
to be able to talk across
these specializations,
these knowledge
specialties in order recall
and to practice the importance
of why we make knowledge,
what we do with knowledge,
what the ethics if you will,
the morality of knowledge
and its application
in human communities and
in human lives might be.
So any kind of an undertaking
which brings people that we
may think of as scientists
or healthcare practitioners
in contact with and in
conversation with those of us
who work in areas that we
might call the humanities
or the social sciences.
It's productive because
it can lead us to think
about what contributions
each of us can make
to the overall enterprise of making
and using human knowledge in the world
in effective and ethical ways.
Disability has always been
studied in the academic world
and in the world of teaching
and knowledge making,
but up until the mid-1980's,
disability was studied primarily
through medicine and science,
through areas such as rehabilitation,
sometimes in public health.
Critical disability studies
which began emerging
as I said somewhere around the 1980s
and maybe a little bit before that
looked at disability
through the lens of culture
and social relations,
and critical disability
studies came out of sociology,
the social sciences and the humanities.
So it began to look at
the human experience
that we call disability in different ways
from the way disability was
looked at through medicine
and science traditionally.
There is questioning of
course, theoretically,
and this is maybe what we want
to call theoretical progress
in that one of the important elements
of any kind of critical theory
is that it is self-reflexive,
so the very term disability
and the very term studies, of course,
has been as we say interrogated
in interesting ways.
And there has been a new
politics of self naming
in this area so many people are thinking
maybe we ought to call this Crip Theory,
perhaps we ought to think about this
in terms of health humanities,
or medical humanities
or healthcare ethics.
I think that it's
important to draw together
a series of knowledge projects
and educational enterprises
that we might think of as
related to one another,
critical disability studies does its work,
it has a body of publications,
it has a body of methods,
theories, a canon,
a history as a academic enterprise.
But so does some of
these other related areas
such as health humanities
which I think is a very productive area
and to think about how all of these areas
have a specific history and
how they all can work together
in order to undertake what
it is that we imagine doing
in the academic world
in knowledge building and dissemination.
I am now a bioethicist,
I decided when I wanted
to think about eugenics
in terms of bioethics,
I wanted to do so from a
position of some authority.
So a former colleague of mine, Adrian Ash,
was a woman who worked in bioethics
as a disability bioethicist very early on
and she practiced bioethics
but wasn't trained in bioethics
because of course there
wasn't training in bioethics
when she began to do this work.
And Adrian was a blind woman,
I think she was trained in sociology
or maybe educational psychology,
she practiced bioethics
by writing and researching
often partnering with Erik
Parens at The Hastings Center.
But the work that she did
that was most effective
is that she would get up
in front of audiences,
of bioethicists and
healthcare practitioners,
and scientists, and
doctors, and she would say
"Quality of life is not
determined by disability,"
and she said it from the
position of a blind woman
and the effect of Adrian saying
that from the positionality
from which she said that
was the most effective part of her work.
And when I decided I
wanted to follow Adrian
and to work in bioethics,
I wanted to make sure
that I had, as I said,
some knowledge and some authority,
but I learned a great deal about bioethics
and I've published in bioethics venues,
I am able to know the literature,
and I think it's been a very effective way
to produce the knowledge
to make the arguments
to find the colleagues and the venues
in which I want to do
work now about eugenics
and the ethics of eugenic practice
in the world we live in now.
(light music)
