Becoming Disabled
Roughly one in five Americans lives with a disability. So where is our pride
movement?
By ROSEMARIE GARLAND-THOMSON
NY Times, August 19, 2016
Not long ago, a good friend of mine said something revealing to me: "I don't
think of you as disabled," she confessed.
I knew exactly what she meant; I didn't think of myself as disabled until a few
decades ago, either, even though my two arms have been pretty significantly
asymmetrical and different from most everybody else's my whole life.
My friend's comment was meant as a compliment, but followed a familiar logic -
one that African-Americans have noted when their well-meaning white friends have
tried to erase the complications of racial identity by saying, "I don't think of
you as black," or when a man compliments a woman by saying that he thinks of her
as "just one of the guys."
This impulse to rescue people with disabilities from a discredited identity,
while usually well meaning, is decidedly at odds with the various pride
movements we've come to know in recent decades. Slogans like "Black Is
Beautiful" and "We're Here, We're Queer, Get Used to It!" became transformative
taunts for generations of people schooled in the self-loathing of racism, sexism
and heterosexism.
Pride movements were the psycho-emotional equivalents of the anti-discrimination
and desegregation laws that asserted the rights of full citizenship to women,
gay people, racial minorities and other groups. More recently, the Black Lives
Matter and the L.G.B.T. rights movement have also taken hold.
Yet pride movements for people with disabilities - like Crip Power or Mad Pride
- have not gained the same sort of traction in the American consciousness. Why?
One answer is that we have a much clearer collective notion of what it means to
be a woman or an African-American, gay or transgender person than we do of what
it means to be disabled.
A person without a disability may recognize someone using a wheelchair, a guide
dog or a prosthetic limb, or someone with Down
syndrome<http://health.nytimes.com/health/guides/disease/down-syndrome/overview.
html?inline=nyt-classifier>, but most don't conceptualize these people as having
a shared social identity and a political status. "They" merely seem to be people
to whom something unfortunate has happened, for whom something has gone terribly
wrong. The one thing most people do know about being disabled is that they don't
want to be that.
Yet disability is everywhere once you start noticing it. A simple awareness of
who we are sharing our public spaces with can be revelatory.
Wheelchair users or people with walkers, hearing
aids<http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthtopics
/hearingaids/index.html?inline=nyt-classifier>, canes, service animals,
prosthetic limbs or breathing devices may seem to appear out of nowhere, when
they were in fact there all the time.
A mother of a 2-year-old boy with
dwarfism<http://health.nytimes.com/health/guides/disease/growth-hormone-deficien
cy/overview.html?inline=nyt-classifier> who had begun attending Little People of
America events summed this up when she said to me with stunned wonder, "There
are a lot of them!" Until this beloved child unexpectedly entered her family,
she had no idea that
achondroplasia<http://health.nytimes.com/health/guides/disease/achondroplasia/ov
erview.html?inline=nyt-classifier> is the most common form of short
stature<http://health.nytimes.com/health/guides/symptoms/short-stature/overview.
html?inline=nyt-classifier> or that most people with the condition have
average-size parents. More important, she probably did not know how to request
the accommodations, access the services, enter the communities or use the laws
that he needs to make his way through life. But because he is hers and she loves
him, she will learn a lot about disability.
The fact is, most of us will move in and out of disability in our lifetimes,
whether we do so through illness, an injury or merely the process of aging.
The World Health Organization defines disability as an umbrella term that
encompasses impairments, activity limitations and participation restrictions
that reflect the complex interaction between "features of a person's body and
features of the society in which he or she lives." The Americans With
Disabilities Act tells us that disability is "a physical or mental impairment
that substantially limits one or more major life activities."
Obviously, this category is broad and constantly shifting, so exact statistics
are hard to come by, but the data from our most reliable sources is surprising.
The Centers for Disease Control and Prevention
estimates<http://www.cdc.gov/media/releases/2015/p0730-us-disability.html> that
one in five adults in the United States is living with a disability. The
National Organization on Disability says<https://www.nod.org/> there are 56
million disabled people. Indeed, people with disabilities are the largest
minority group in the United States, and as new disability categories such as
neurodiversity, psychiatric disabilities, disabilities of aging and learning
disabilities emerge and grow, so does that percentage.
Disability growth areas - if you will - include diagnostic categories such as
depression, anxiety disorders,
anorexia<http://health.nytimes.com/health/guides/disease/anorexia-nervosa/overvi
ew.html?inline=nyt-classifier>, cancers, traumatic brain injuries,
attention-deficit disorder, autoimmune disease, spinal cord injuries,
autistic<http://health.nytimes.com/health/guides/disease/autism/overview.html?in
line=nyt-classifier> spectrum disabilities and
dementia<http://health.nytimes.com/health/guides/disease/dementia/overview.html?
inline=nyt-classifier>.
Meanwhile, whole categories of disability and populations of people with certain
disabilities have vanished or diminished significantly in the 20th century with
improved public health measures, disease prevention and increased public safety.
Because almost all of us will experience disability sometime in our lives,
having to navigate one early in life can be a great advantage. Because I was
born with six fingers altogether and one quite short arm, I learned to get
through the world with the body I had from the beginning. Such a misfit between
body and world can be an occasion for resourcefulness. Although I certainly
recognized that the world was built for what I call the fully fingered, not for
my body, I never experienced a sense of losing capacity, and adapted quite
readily, engaging with the world in my preferred way and developing practical
workarounds for the life demands my body did not meet. (I used talk-to-text
technology to write this essay, for example.)
Still, most Americans don't know how to be disabled. Few of us can imagine
living with a disability or using the technologies that disabled people often
need. Since most of us are not born into disability but enter into it as we
travel through life, we don't get acculturated the way most of us do in our race
or gender. Yet disability, like any challenge or limitation, is fundamental to
being human - a part of every life. Clearly, the border between "us" and "them"
is fragile. We just might be better off preparing for disability than fleeing
from it.
Yet even talking about disability can be a fraught experience. The vocabulary of
this status is highly charged, and for even the most well-meaning person, a
conversation can feel like stepping into a maze of courtesy, correctness and
possible offense. When I lecture about disability, someone always wants to know
- either defensively, earnestly or cluelessly - the "correct" way to refer to
this new politicized identity.
What we call ourselves can also be controversial. Different constituencies have
vibrant debates about the politics of self-naming. "People first" language
asserts that if we call ourselves "people with disabilities," we put our
humanity first and consider our impairment a modification. Others claim
disability pride by getting our identity right up front, making us "disabled
people." Others, like many sign language users, reject the term "disability."
The old way of talking about disability as a curse, tragedy, misfortune or
individual failing is no longer appropriate, but we are unsure about what more
progressive, more polite, language to use. "Crippled," "handicapped" and
"feebleminded" are outdated and derogatory. Many pre-Holocaust eugenic
categories that were indicators for state-sponsored sterilization or
extermination policies - "idiot," "moron," "imbecile" and even "mentally
retarded" - have been discarded in favor of terms such as "developmentally
delayed" or "intellectually disabled."
In 2010, President Obama signed Rosa's Law, which replaced references to "mental
retardation<http://health.nytimes.com/health/guides/disease/mental-retardation/o
verview.html?inline=nyt-classifier>" with "intellectual disability" in federal
statutes.
The author and scholar Simi Linton writes about learning to be disabled in a
hospital after a spinal cord
injury<http://health.nytimes.com/health/guides/disease/spinal-cord-trauma/overvi
ew.html?inline=nyt-classifier> - not by way of her rehabilitation but rather by
bonding with other young people new to disability. She calls this entering into
community "claiming disability."
In "Sight Unseen," an elegant explication of
blindness<http://health.nytimes.com/health/guides/symptoms/blindness/overview.ht
ml?inline=nyt-classifier> and sight as cultural metaphors, Georgina Kleege wryly
suggests the difference between medical low vision and blindness as a cultural
identity by observing that, "Writing this book made me blind," a process she
calls gaining blindness rather than losing sight.
Like them, I had no idea until the 1980s what it meant to be disabled, that
there was a history, culture and politics of disability. Without a disability
consciousness, I was in the closet.
Since that time, other people with disabilities have entered the worlds in which
I live and work, and I have found community and developed a sturdy disability
identity. I have changed the way I see and treat myself and others. I have taken
up the job of teaching disability studies and bioethics as part of my work. I
have learned to be disabled.
What has been transformed is not my body, but my consciousness.
As we manage our bodies in environments not built for them, the social barriers
can sometimes be more awkward than the physical ones.
Confused responses to racial or gender categories can provoke the question "What
are you?" Whereas disability interrogations are "What's wrong with you?" Before
I learned about disability rights and disability pride, which I came to by way
of the women's movement, I always squirmed out a shame-filled, "I was born this
way." Now I'm likely to begin one of these uncomfortable encounters with, "I
have a disability," and to complete it with, "And these are the accommodations I
need." This is a claim to inclusion and right to access resources.
This coming out has made possible what a young graduate student with a
disability said to me after I gave a lecture at her university. She said that
she understood now that she had a right to be in the world.
We owe much of this progress to the Americans With Disabilities Act of 1990 and
the laws that led up to it. Starting in the 1960s, a broad disability rights
movement encouraged legislation and policy that gradually desegregated the
institutions and spaces that had kept disabled people out and barred them from
exercising the privileges and obligations of full citizenship. Education,
transportation, public spaces and work spaces steadily transformed so that
people with disabilities came out of hospitals, asylums, private homes and
special schools into an increasingly rebuilt and reorganized world.
That changed landscape is being reflected politically, too, so much so that when
Donald Trump mocked the movement of a disabled reporter, most of the country
reacted with shock and outrage at his blatant discrimination, and that by the
time the Democratic National Convention rolled round, it seemed natural to find
the rights and dignity of people with disabilities placed front and center.
Hillary Clinton's efforts early in her career to secure the right to an
education for all disabled children was celebrated; Tom Harkin, the former Iowa
senator and an author of the Americans With Disabilities Act, marked the law's
26th anniversary and called for improvements to it. People with disabilities
were featured speakers, including Anastasia Somoza, who received an ovation for
her powerful speech. President Obama, in his address, referred to "black, white,
Latino, Asian, Native American; young, old; gay, straight; men, women, folks
with disabilities, all pledging allegiance, under the same proud flag."
Becoming disabled demands learning how to live effectively as a person with
disabilities, not just living as a disabled person trying to become nondisabled.
It also demands the awareness and cooperation of others who don't experience
these challenges. Becoming disabled means moving from isolation to community,
from ignorance to knowledge about who we are, from exclusion to access, and from
shame to pride.
This is the first essay in a weekly series by and about people living with
disabilities.
Rosemarie
Garland-Thomson<http://english.emory.edu/home/people/faculty/faculty_pages/garla
nd-thomson.html> teaches English and bioethics at Emory University, where she is
a founding director of the Disability Studies Initiative.
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ing-disabled.html>
