|
an
alien within "progressive" circles
an
alien within my own community
a
structure and framework for a fully inclusive community
transforming
ourselves to transform the world
the
second phase: from disability rights to disability culture,
paul longmore
|
 Movement
Building
by Sarah Triano
As I looked out into the crowd of 300 people gathered for
the American Association of People with Disabilities Leadership
Gala, fear struck my heart. I had just finished my acceptance
speech for a Hearne/AAPD Leadership Award and although there
were hearty cheers from some of the more radical members of
the audience, the majority of the people present sat looking
at me with uncertain stares. I had just delivered a message
of Disability Pride and acceptance, and called on all members
of the Disability community to "take back the definition
of disability with militant self-pride" - a message which
I soon discovered most people in the audience (disabled and
non-disabled alike) were not ready for. The experience was
oddly reminiscent of a scene in the movie, Back to the
Future, when Michael J. Fox is playing the guitar at a
school dance and then suddenly launches into hard core rock,
and all the people at the dance suddenly stop dancing and
stare at him like he is from another planet. "I guess
you're not ready for that," he says. I was definitely
feeling "alien" that night.
AN ALIEN WITHIN
"PROGRESSIVE CIRCLES"
That same "alien" feeling returned the week after
the AAPD Leadership Gala when I attended the Midwest Training
Academy's week-long organizer training. The second day into
the training, one of the trainers boasted of a successful
campaign he led in his community to end lead-poisoning. He
had me all the way until the part where he said, "We
even got the Teacher's Union on board and the way we did it
was by telling them, 'You need to support our campaign because
you don't want more kids like that in your classroom.
It costs more to educate them and they cause all kinds of
problems." My red flag radar piqued, I raised my hand
and cautiously asked, "Kids like what?" The
trainer responded, "You know. Kids with all kinds of
learning and behavior problems from led-poisoning." And
I said, "You mean kids with learning and psychiatric
disabilities?" "Right," he said. After a heated
debate over why it is fundamentally wrong to win any campaign
on the back of another oppressed community, I finally gave
up trying to educate this trainer and most of the other people
in the room, and once again retreated to my "alien"
status. It was all I could do, however, when an organizer
for a local worker's union and I participated in a role play
together later in the week. This organizer was instructed
to try and recruit me for her campaign which, unbeknownst
to me, was to reopen the Lincoln Developmental Center - an
institution for people with developmental disabilities in
Illinois which had been closed due to flagrant human rights
violations (including rape, abuse, and death of inmates).
When this organizer tried to recruit me for her campaign,
I could hardly believe what I was hearing. "Don't you
realize what you are doing?" I asked. "Don't you
realize that you are supporting the oppression of people with
disabilities? I am all for supporting worker's rights,"
I told her, "but not at the expense of my people's human
rights." I left the Midwest Training Academy feeling
"alien" once again - the one place I thought I could
find acceptance was definitely among a group of other progressive
activists - but I couldn't be more wrong. Mars was looking
more like home every day.
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AN ALIEN WITHIN
MY OWN COMMUNITY
Just when I thought it couldn't get any worse, my inquisitive
nature got the best of me and I started asking questions about
what I perceived to be contradictions within in the Disability
Rights Movement that threatened our credibility as a movement,
and was quickly silenced, patted on the head, and told to
be a "good little girl." I referred to the "malestream
disability rights movement" in an interview (due to the
sexism within the movement I had experienced), and received
a boatload of hate mail from angry, disabled men. I asked
why disabled activists in California were accepting money
from Northrup-Grumman, the well-known weapons manufacturer/war
profiteer, for a conference they were holding, and was told
by a respected leader within the movement that I needed to
learn the importance of "respect and political savvy."
"Even though we may feel a certain way," I was told,
"we sometimes have to 'suck it up' and act accordingly
in order for a greater good to happen." The coup de
grace, however, happened when I attended my first ADAPT
action in San Francisco.
As we waited for the elevator at the San Francisco Muni station
the morning of October 21, my friend, Laura, and I could barely
contain our excitement. After a long journey from Chicago,
we finally made it to San Francisco for our first national
ADAPT action. Even though we had both been actively involved
in Chicago ADAPT, and in the activities of the National Disabled
Students Union, we couldn't wait to experience the "coming
home" feeling that many people talk about after attending
their first national ADAPT action. It was a typical foggy
day in San Francisco, the type of day that makes it very difficult
for someone with an immune system disability - like myself
- to climb stairs, so Laura and I decided to wait for the
elevator. As we were waiting, a voice from behind us said,
"You know, you ABs should really take the stairs and
leave the elevator for those of us who need and deserve it."
After signing this message to Laura, who is Deaf, she and
I turned around and found ourselves face to face with a white,
middle-aged man in a wheelchair. "We have a new name
for you ABs," a young woman in a chair beside him said
to us. "We call you Walkie-Talkies." These were
the welcoming words that greeted us when we arrived at our
first national ADAPT action. Needless to say, the "coming
home" experience for us was less than welcoming.
Technically, Laura and I are "walkies." But we
are also young women who openly and proudly identify as people
with disabilities - young, disabled women who experience disability
discrimination in the wider society on a daily basis. When
the discrimination comes from within your own community though,
it hurts… it hurts really bad. It takes a lot for someone
with a non-apparent disability to get to a place where they
openly and proudly identify as disabled. The pressures for
us to "pass" and deny our disability - and our community
- are tremendous. But to finally get to that place of power
and pride and then be called an AB or a "walkie-takie"
by someone who you consider to be your sister or brother is
devastating.
I wish I could say that this was an isolated instance of
ignorance - which is evident in every community, no matter
how "progressive" - but I can't. Nor is this a defining
characteristic of ADAPT. This "culture of internal exclusion"
that we experienced at the national ADAPT action is something
that we deal with all the time within the US disability rights
movement as people who are not visibly disabled. Take, for
example, the time when I shared an experience on the Berkeley
disabled mailing listserv about the person who glue a sign
to my car windshield that read, "Mentally Handicapped,"
only to receive the following response from one of my "brothers"
with a disability: "Oh no, it's another one of those
'supposed' invisibly disabled people trying to jump on the
disability bandwagon again."
Are we at a place in our movement where the efforts to police
the boundaries (of who is and is not disabled) are overtaking
our initial vision of equality and inclusion for all? At the
center of many of our struggles in the international disability
rights movement is a fight against exclusion and segregation.
National ADAPT's on-going commitment to this fight is what
motivated us to travel all the way from Chicago and participate
in the San Francisco action. We - and 15 other members of
NDSU from across the country - were there to make a statement
against exclusion and segregation everywhere, yet there it
was within our own movement.
So the next time the question is asked, "Where were
the NDSU representatives and people from California at the
ADAPT action," or "what is the future of the disability
rights movement and what seems to be the problem," remember
that we were there - we are here - but perhaps
you can't see us because of the preoccupation within the movement
with patrolling the boundaries of disability and ensuring
that one's own piece of the pie is not threatened. If we perpetuate
the same discrimination within the movement that we are trying
to fight externally, our efforts to combat societal segregation
and exclusion will continue to be limited and hollow.
In his message to the Justice for All listserv entitled,
"The Future of the Disability Rights Movement,"
George Kerford asked, "can we use the excuse that ADAPT
is too radical… are we afraid to be called radical?"
That depends on your definition of "radical." The
prominent civil rights activist, Ella Baker, once defined
"radical" as "getting down to and understanding
the root causes." "It means facing a system that
does not lend itself to your needs," she said, "and
devising means by which you change that system." Perhaps
there is a more "radical" way of looking at this
issue. Rather than pointing fingers and accusing each other
of not being supportive in typical medical model fashion,
why don't we - as a community - try to get down to and understand
the root causes of the lack of participation within the larger
movement. We need to face a system - the US Disability Rights
Movement - that is not currently lending itself to the needs
of many and devise a means by which to change that system.
And if you don't believe that the disability rights movement
itself constitutes a system that has been institutionalized,
then just ask those of us who have been - and continue to
be - excluded and left out. Just ask someone who has a non-apparent
disability, a disabled person who is from a non-Western culture,
someone with a cognitive disability, a queer disabled person,
someone in the community who is non-white or poor. When I
refer to the "malestream disability rights movement"
and receive hate mail, I know we still have a long way to
go. When the woman with breast cancer and the African-American
janitor with asthma (both of whom have non-apparent disabilities)
are denied equal justice, but the white, privileged, Stanford
male graduate who can afford to play golf is not, I know we
still have a long way to go. When Laura and I can finally
attend a national disability rights action and not be called
ABs and "Walkie-Talkies" but be considered equal
partners in the fight for social justice and disability rights,
I will then know that we - as a community - have finally started
to effectively address not only the systemic exclusion that
we experience at the hands of the broader society, but also
the exclusion and segregation that has been institutionalized
within our own movement.
Hannah Arendt once said that, "the most radical revolutionary
will become a conservative the day after the revolution."
Since its founding, the disability rights movement in the
US has served as a strong voice for radical revolutionary
change. But no radical revolutionary force can remain so as
long as it refuses to constantly evaluate itself and adapt
according to the demands and needs of the changing times.
When the strategies we use start to exclude and offend key
segments of our community, allow participation by only those
privileged members who can afford to participate, and rely
on a tactic of secrecy to the point where it becomes an access
barrier for members of our community with cognitive and other
disabilities, then we have ceased to be radical and revolutionary.
It is imperative that we begin to take the disability rights
movement to the next stage, to strive for a higher level of
inclusivity and equality that recognizes and celebrates, in
the words of Cal Montgomery, "the many different fabrics
out of which the disability cloth is made." This is a
challenge to make participation in the disability rights movement
the "coming home" experience that it should be for
all Americans with disabilities - visibly and non-visibly
disabled alike. No one should be treated like a second-class
citizen in this, the country of disability - a land I someday
hope to call home.
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A STRUCTURE
AND FRAMEWORK FOR A FULLY INCLUSIVE COMMUNITY
Movement Building
This vision of a welcoming, fully inclusive and proud disability
community that actively engages in "dialectical humanism"
began to take shape when I visited the Boggs Center in Detroit
in July of 2003 and met with Grace Lee Boggs. During my visit,
Grace articulated a structure and framework for developing
an inclusive community and movement that resonated with me
on multiple levels. Even though few of the people I met in
Detroit at the Boggs Center had disabilities, they all intuitively
understood the language I was speaking and the direction I
was moving in. According to Grace in her autobiography, Living
for Change, "To make a revolution, people must not
only struggle against existing institutions. They must make
a philosophical/spiritual leap and become more human
human beings. In order to change/transform the world, they
must change/transform themselves…and struggle not only
against the external enemy, but also against the enemy within
(p. 153) In her book, Grace also emphasized:
- "The ability to evolve as reality changes and as
you learn from your own experiences and the experiences
of others" (p. 155);
- If those "who need to make a revolution also need
to transform themselves into more socially responsible,
more self-critical human beings, then our role as revolutionists
is to involve them in activities that are both self-transforming
and structure-transforming, exploring and trying to resolve
in theory and practice fundamental questions of human life….What
kind of transformation do we need in our values, institutions,
and behavior to reconnect us with the rhythms and processes
of nature? Should we do something just because we can do
it? What is the difference between needs and wants? How
do we meet people's psychic hungers? What does it mean to
care? What is the purpose of education? How do we create
a community? What is the difference between a community
and a network? Why is community a revolutionary idea? How
do communities start?" (p. 156).
- The need to create a movement "in which women are
the equal of men and every member is developed into a theoretical
and practical leader, participating in creating the ideas
and prepared to lead struggles at the community level"
(p.160).
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TRANSFORMING
OURSELVES TO TRANSFORM THE WORLD
Movement Building
A few weeks prior to visiting the Boggs Center, I led a march
in Chicago to protest the weakening of civil rights protections
for students with disabilities during the Reauthorization
of the Individuals with Disabilities Education Act. Over 40
activists, high school students with disabilities, parents/family
members, and cross-disability activists (including a large
population of Deaf activists), all marched to the Region V
Office of the U.S. Department of Education to demand that
the Department guarantee that the rights of students with
disabilities under I.D.E.A will be enforced no matter what
happens during the I.D.E.A reauthorization process. When we
reached the Department of Ed, we marched in a circle in front
of the building, chanting loudly, and created quite a stir.
I felt quite badly that we did not achieve one of the three
fundamental principles of direct action according to the Midwest
Training Academy: "Win concrete improvements in people's
lives." Because of this, many people in the disability
rights movement in Chicago characterized the protest as a
"failure." After leaving the Boggs Center, however,
with a newfound structure and framework for community building,
I realized that the protest was not a failure at all. On the
contrary, according to the theory of revolution articulated
by the Bogg's center, the march was a tremendous success because
the feeling of power, community, unity, and solidarity evident
during the protest was incredible. It was so strong, in fact,
that the group did not want to break up and disperse at the
end of the protest. We all ended up going out to dinner together
and expressed a desire to meet as a community again in the
near future. It was an activity that was both self-transforming
and structure-transforming - an activity that left all of
us, in the words of Grace Boggs, "as more human
human beings." Even though there were only 40 of us,
and even though we did not win any "concrete, tangible
changes or improvements," we began to create a community,
we began to love ourselves and each other - and that, to me,
was the most meaningful "improvement in people's lives"
we could have asked for. I am truly excited for the future
of our movement and cannot wait to see where the future takes
us. Lead On!
Back to Menu
The Second Phase: From
Disability Rights to Disability Culture
by Paul K. Longmore
First published in DISABILITY RAG & RESOURCE, Sept./Oct.
1995. Internet publication URL: http://www.independentliving.org/docs3/longm95.html
The movement of disabled Americans has entered its second
phase. The first phase has been a quest for disability rights,
for equal access and equal opportunity, for inclusion. The
second phase is a quest for collective identity. Even as the
unfinished work of the first phase continues, the task in
the second phase is to explore or to create a disability culture.
This historic juncture offers a moment for reflection and
assessment. It is an opportunity to consider the aims and
achievements of the disability movement over the past generation
and in the last few years.
In August 1985, The Disability Rag reported an incident that
captured the essence of the disability movement's first phase:
"'It comes to a point where you can't take it any more,'
said Nadine Jacobson, sounding for all the world like Rosa
Parks. She and her husband Steven were arrested July 7th for
refusing to move from seats in the emergency exit row of a
United Airlines flight on which they were to leave Louisville
after the National Federation of the Blind convention here.
'You lose some of your self-respect every time you move,'
she told Louisville Times reporter Beth Wilson. United has
a policy of not letting blind people sit in emergency exit
rows, because it believes they might slow an evacuation in
an emergency , though there seems to be no airline policy
against serving sighted passengers in emergency exit rows
as many drinks as they want for fear they might become too
intoxicated to open an emergency door properly in the event
of a disaster. NFB members say it's discriminatory treatment,
plain and simple. The airline says it is not. The Jacobsons
pleaded 'not guilty' to the charge of disorderly conduct."
Six months later, The Rag related that the Jacobsons had
been acquitted of the charge. A half year after that, in the
fall of 1986, it announced that Congress had passed the Air
Carrier Assistance Act, which amended the Federal Aviation
Act to prohibit discrimination against persons with disabilities
in airline travel. Yet over the next three years, The Rag
reported instances of discrimination against blind and wheelchair-riding
travelers, FAA regulations that restricted the rights of disabled
airline passengers, including a rule prohibiting them from
sitting in exit rows, and the opposition of the NFB, the Eastern
Paralyzed Veterans Association and ADAPT to these practices
and polices.
Despite the problem with its implementation, the Air Carrier
Assistance Act was one of some fifty federal statutes in a
quarter century of legislation that reflected a major shift
in public policymaking regarding Americans with disabilities.
That process began in 1968 with the Architectural Barriers
Act and culminated in 1990 with the ADA. In between came such
legislative high points as Section 504 and P.L. 94-142. This
body of laws departed significantly from previous policies
because it sought not just to provide more "help"
to persons regarded as disadvantaged by disability, but rather
expressed and implemented a fundamental redefinition of "disability"
as a social more than a medical problem.
The new-model policies coincided with, and to a degree reflected,
the emergence of disability-rights activism. Airline accessibility
was only one of the issues spurring that activism. Deaf and
disabled activists moved on everything from the presidency
of Gallaudet University to the pervasive impact of telethons.
But whatever the particular issue at hand, activists were
redefining "disability" from the inside.
This activism was the political expression of an emerging
consciousness among a younger generation of Americans with
disabilities. A 1986 Louis Harris survey of adults with disabilities
documented that generational shift in perspective. While only
a minority of disabled adults over the age of 45 regarded
people with (disabilities as a minority (group like blacks
or Hispanics, 54% of those aged 18 to 44 agreed with the perspective.
In addition, substantial majorities in every age bracket believed
people with disabilities needed legal protection from discrimination,
but the largest percentage of respondents holding that view
was in the youngest age group, 18-30. Yet only one-third were
aware of Section 504. It appeared that the great mass of disabled
people had not yet become politically active. Their views
reflected a proto-political consciousness, the emerging minority-group
consciousness of a new generation.
That younger generation has spurned institutionalized definitions
of "disability and of people with disabilities. At its
core, the new consciousness has repudiated the reigning medical
model, which defines "disability" as physiological
pathologies located within individuals. That definition necessarily
prescribes particular solutions: treatments or therapies to
cure those individuals or to correct their vocational or social
functioning. Cure or correction has been viewed as the only
possible means by which people with disabilities could achieve
social acceptance and social assimilation.
Those who are not cured or corrected have been defined as
marginalized by disability. They have been relegated to invalidism.
This has meant not just physical dependency or institutionalization,
but, most fundamentally, social invalidation.
While the medical model claims to be scientific, objective
and humane, within its practice has lurked considerable ambivalence
toward the people it professes to aid. In one respect, the
medical model has been the institutionalized expression of
societal anxieties about people who look-different or function
differently. It regards them as incompetent to manage their
own lives, as needing professional, perhaps lifelong, supervision,
perhaps even as dangerous to society.
The new disability perspective has presented a searching
critique of the medical model. It has argued that by locating
the problem in the bodies of individuals with disabilities,
the medical model cannot account for, let alone combat, the
bias and discrimination evident in such actions as the mistreatment
and arrest of Nadine and Steven Jacobson. Indeed, disability-rights
advocates have argued that the implementation of the medical
model in health care, social services, education, private
charity and public policies has institutionalized prejudice
and discrimination. Far from being beneficial, or even neutral,
the medical model has been at the core of the problem.
In the place of the medical model, activists have substituted
a sociopolitical or minority-group model of disability. "Disability,"
they have asserted, is primarily a socially constructed role.
For the vast majority of people with disabilities, prejudice
is a far greater problem than any impairment: discrimination
is a bigger obstacle for them to "overcome" than
any disability. The core of the problem, in the activists'
view, has been historically deep-seated, socially pervasive
and powerfully institutionalized oppression of disabled people.
To combat this oppression, the disability movement not only
called for legal protection against discrimination, it"
a fashioned a new idea in American civil-rights theory: the
concept of equal access. Traditional rehabilitation a policy
defined accommodations such as architectural modifications,
adaptive devices (wheelchairs, optical readers) and services
(sign-language interpreters) as special benefits to those
who are fundamentally dependent. Disability-rights ideology
redefined them as merely different modes of functioning, and
not inherently inferior.
Traditional civil-rights theory permitted differential treatment
of minorities only as a temporary expedient to enable them
to achieve parity: Disability rights ideology claimed reasonable
accommodations as legitimately permanent differential treatment
because they are necessary to enable disabled persons to achieve
and maintain equal access.
"Access" could have been limited to physical modifications
in the personal living and work environments of disabled individuals.
Instead, disability activists have pressed forward a broad
concept of equal access that has sought to guarantee full
participation in society. To ensure equal opportunity, they
have declared, equal access and reasonable accommodations
must be guaranteed in law as civil rights.
To nondisabled opponents, 'disabled activists have not sought
equal opportunities, 'they have demanded special treatment.
Disabled people could not, the critics have complained, on
the one hand, .claim equal opportunity and equal social standing,
and, on the other, demand "special" , privileges
such as accommodations and public financial aid (e.g., health
insurance). Disabled people could not have it both ways. According
to majority notions, equality has meant identical arrangements
and treatment. It is not possible in American society to be
equal and different, to be equal and disabled.
On this basic issue of the nature of equality and the means
of accomplishing it, disabled activists and their nondisabled
opponents have had radically different perceptions. And that
difference was not new in the 1970s and '80s. It had a long
history.
To take just one example in 1949 a spokesman for the National
Federation of the Blind testifying before a Congressional
committee argued simultaneously for Aid to the Blind (ATB),
a social-welfare program of financial assistance, and for
what today would be called civil rights. The disability of
blindness was a physical condition that incurred significant
expense and limitations, he argued, and therefore required
societal aid. But it was also a social condition that involved
discriminatory exclusion. He quoted the famous legal scholar
and blind activist Jacobus ten Broek's "Bill of Rights
for the Blind " to the effect that the real handicap
blindness, far surpassing its physical limitations,"
was "exclusion from the main channels of social and economic
activity."
Throughout the history disabled activism, advocates like
this NFB spokesman simultaneously called for "social
aid" and civil rights. like their nondisabled opponents,
they saw no contradiction in this position. It was possible
in America they implicitly proclaimed, to be equal and to
require aid and accommodations, to be equal and different.
Indeed, for Americans with disabilities, any other approach
to equality seemed impossible.
The disability-movement critique of the medical model has
also argued that the complete medicalization of people with
disabilities has advanced the agenda of professional interest
groups. People with disabilities have served as a source of
profit, power and status.
An estimated 1.7 million mentally, emotionally or physically
disabled Americans have been defined as "Incurable"
and socially Incompetent and have been relegated to medical
warehouses. Another ten to eleven million disabled adults,
70% of working-age adults with disabilities in the United
States, are unemployed and welfare dependent, while uncounted
others languish below the poverty line.
According to the disability-movement analysis, the immediate
causes of this marginalization have been public policies.
Health-care financing policies force disabled people into
Institutions and nursing homes rather than funding independent
living. Income-maintenance and public health-insurance policies
include "disincentives" that penalize disabled individuals
for trying to work productively. Disabled adults have also
been relegated to dependency because of continuing widespread
inaccessibility and pervasive job-market discrimination.
But according to this analysis, the ultimate cause of their
marginalization is that people with disabilities are highly
profitable. For that reason, they have been kept segregated
in what is virtually a separate economy of disability. That
economy is dominated by nondisabled interests: vendors of
over-priced products and services; practitioners who drill
disabled people in imitating the "able-bodied" and
deaf people in mimicking the hearing; a nursing-home industry
that reaps enormous revenues from incarcerating people with
disabilities.
Thus, concludes this analysis, millions of deaf and disabled
people are held as permanent clients and patients. They are
confined within a segregated economic and social system and
to a socioeconomic condition of childlike dependency. Denied
self-determination, they are schooled in social incompetency
, and then their confinement to a socially invalidated role
is justified by that incompetency .According to this critique,
disabled issues are fundamentally issues of money and power.
The disability-rights movement marked a revolt against this
paternalistic domination and a demand for disabled and deaf
self-determination. That revolt and that demand has been at
the center of the controversy over telethons. Who should have
the power to define the identities of people with disabilities
and to determine what it is they really need? Or parallel
to this dispute, how could the hearing majority on the Gallaudet
University board of trustees reject two qualified deaf educators
to select yet another hearing president? "Who has decided
what the qualifications [for president] should be?" asked
Gallaudet student-government president Greg Hlibok. "Do
white people speak for black people?" Hence the students'
demand for a deaf majority on the board of trustees.
But the attack on the medical model has gone beyond merely
questioning the motives of nondisabled interest groups. At
a still deeper level, that critique has explained the relentless
medicalization of people with disabilities as an attempt to
resolve broader American cultural dilemmas. In a moment of
intense social anxiety: it has helped reassure nondisabled
people of their own wholeness as human beings, their own authenticity
as Americans. It has done so by making "disability,"
and thus people with disabilities, the negation of full and
valid American humanity.
In order for people with disabilities to be respected as
worthy Americans, to be considered as whole persons or even
approximations of persons, they have been instructed that
they must perpetually labor to "overcome" their
disabilities. They must display continuous cheerful striving
toward some semblance of normality. The evidence of their
moral and emotional health, of their quasi-validity as persons
and citizens, has been their exhibition of the desire to become
like nondisabled people. This is, of course, by definition,
the very thing people with disabilities cannot become.
Thus, they have been required to pursue a "normality"
that must forever elude them. They have been enticed into
a futile quest by having dangled before them the ever-elusive
carrot of social acceptance.
Recognition that "overcoming" is rooted in nondisabled
interests and values marked the culmination of the ideological
development of the disability movement's first phase. And
that analytical achievement prepared the way for a transition
into the second phase.
The first phase sought to move disabled people from the margins
of society to the mainstream by demanding that discrimination
be outlawed and that access and accommodations be mandated.
The first phase argued for social inclusion. The second phase
has asserted the necessity for self-definition. While the
first phase rejected the medical model of disability, the
second has repudiated the nondisabled majority norms that
partly gave rise to the medical model.
That repudiation of dominant values has been most obvious
in the rejections of the medically proclaimed need to be cured
in order to be validated. At the time of the Gallaudet student
revolt, Eileen Paul, co-founder of an organization called
Deaf Pride, proclaimed, "This is a revolt against a system
based on the assumption that deaf people have to become like
hearing people and have to fit into the dominant hearing society."
As they spurned devaluing nondisabled definitions, deaf people
and disabled people began to celebrate themselves. Coining
self-affirming slogans such as "Disabled and Proud,"
"Deaf Pride" and "Disability Cool," they
seized control of the definition of their identities. This
has been not so much a series of personal choices as a collective
process of reinterpreting themselves and their issues. It
is a political and cultural task.
Beyond proclamations of pride, deaf and disabled people have
been uncovering or formulating sets of alternative values
derived from within the deaf and disabled experiences. Again,
these have been collective rather than personal efforts. They
involve not so much the statement of personal philosophies
of life, as the assertion of group perspectives and values.
This is a process of deaf cultural elaboration and of disabled
culture-building.
For example, some people with disabilities have been affirming
the validity of values drawn from their own experience. Those
values are markedly different from, and even opposed to, nondisabled
majority values. They declare that they prize not self-sufficiency
but self-determination, not independence but interdependence,
not functional separateness but personal connection, not physical
autonomy but human community. This values-formation takes
disability as the starting point. It uses the disability experience
as the source of values and norms.
The affirmation of disabled values also leads to a broad-ranging
critique of non- disabled values. American culture is in the
throes of an alarming and dangerous moral and social crisis,
a crisis of values. The disability movement can advance a
much-needed perspective on this situation, It can offer a
critique of the hyperindividualistic majority norms institutionalized
in the medical model and at the heart of the contemporary
American crisis. That analysis needs to be made not just because
majority values are impossible for people with disabilities
to match up to, but more important, because they have proved
destructive for everyone, disabled and nondisabled alike.
They prevent real human connection and corrode authentic human
community.
Another manifestation of the disability movement's analysis
and critique has been the attempts over the past dozen years
to develop "disability studies" within research
universities. Every social movement needs sustained critical
analysis of the social problems it is addressing. Such movements
develop their own cadres of intellectuals and scholars who
arise from the community and often connect it with academic
institutions. Disability studies has been conceived as a bridge
between the academy and the disability community.
But what should disability studies look like? Professor Simi
Linton, a disabled scholar/activist, and her colleagues at
Hunter College in New York have proposed a useful working
definition of disability studies:
"Disability Studies reframes the study of disability
by focusing on it as asocial phenomenon, social construct,
metaphor and culture, utilizing a minority group model. It
examines ideas related to disability in all forms of cultural
representation throughout history, and examined the policies
and practices of all societies to understand the social, rather
than physical and psychological, determinants of the experience
of disability. Disability Studies both emanated from and supports
the Disability Rights Movement, which advocated for civil
rights and self-determination. The focus shifts the emphasis
away from a prevention/treatment remediation paradigm, to
a social/cultural/political paradigm. This shift does not
signify a denial of the presence of impairments, nor a rejection
of the utility of intervention and treatment. Instead, Disability
Studies has been developed to disentangle impairments from
the myth, ideology and stigma that influence social interaction
and social policy. The scholarship challenges the idea that
the economic and social status and the assigned roles of people
with disabilities are inevitable outcomes of their condition."
This definition captures, the fundamental features of disability
studies as it has grown out of the disability rights movement.
If disability studies is to serve the disability community
and movement effectively it needs to define an agenda.. That
project should include the following goals:
Disability studies should serve as an access ramp between
the disability community and research universities. It must
forge a fruitful connection between the disability community
/movement and such institutions.
The traffic of ideas and persons on that ramp should flow
in both directions. It must be a two-way street. The disability
perspective, the insights, experience and expertise of people
with disabilities, must inform research, producing new questions,
generating new understandings.
At the same time, academic researchers can help bring new
rigor to the disability-rights movement's analysis and activism.
Collaboration between scholars and advocates can pro; duce
a deeper critique of disability policy and the social arrangements
that affect people with disabilities and can generate a more
fully elaborated ideology of "disability" and disability
rights.
Complementing these endeavors, disability studies should
also forge a link with disabled artists and writers. This
collaboration can support the current flowering of disability
arts. It will also promote disability-based cultural studies
that can uncover disabled values, explain the social/cultural
construction of "disability" by the majority culture
and critique dominant nondisabled values.
To implement this agenda, disability studies must obtain
support for faculty and graduate students. That support must
come in two forms: funding to pay for research and teaching,
and affirmative action to recruit faculty and students with
disabilities to develop disability studies. We need to build
a phalanx of disabled disability-studies scholars and intellectuals.
To succeed and to remain true to its purpose, disability
studies needs the active support and involvement of the disability
community. Disability studies can then help advance both phases
of the disability movement.
Those two phases are not separate and successive chronological
periods. They are complementary aspects of the disability
movement. The concept of equal access represents a politics
of issues. It is the effort of Americans with disabilities
to build an infrastructure of freedom and self- determination.
The proclamation of disability and deaf pride and the elaboration
of disability and deaf cultures express a politics of identity.
It is an affirmation, a celebration of who we are, not despite
is disability or deafness, but precisely because of the disability
and deaf experiences.
These two phases of the disability movement are reciprocal.
Each is essential to the other. Together they declare who
we are and where we intend to go.
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