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/o
verview.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/diseasesconditionsandheal
thtopics/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-
deficiency/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/achondrop
lasia/overview.html?inline=nyt-classifier> is the most common form of
short
stature<http://health.nytimes.com/health/guides/symptoms/short-stature/o
verview.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.htm
l> 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-nervos
a/overview.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?inline=nyt-classifier> spectrum disabilities and
dementia<http://health.nytimes.com/health/guides/disease/dementia/overvi
ew.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-retar
dation/overview.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-traum
a/overview.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/ove
rview.html?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_pag
es/garland-thomson.html> teaches English and bioethics at Emory
University, where she is a founding director of the Disability Studies
Initiative.
http://mobile.nytimes.com/images/100000004600391/2016/08/21/opinion/sund
ay/becoming-disabled.html>
