Thank you Linda for sharing that article with us. It was very good.
Connie
From: ourplace-bounce@xxxxxxxxxxxxx [mailto:ourplace-bounce@xxxxxxxxxxxxx]
On Behalf Of Linda Gehres
Sent: Saturday, August 20, 2016 4:49 PM
To: ourplace@xxxxxxxxxxxxx
Subject: [ourplace] Becoming Disabled
Subject: Becoming Disabled
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/overv
iew.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/diseasesconditionsandhealthto
pics/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-defi
ciency/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/achondroplasi
a/overview.html?inline=nyt-classifier> is the most common form of short
stature<http://health.nytimes.com/health/guides/symptoms/short-stature/overv
iew.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/ov
erview.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.htm
l?inline=nyt-classifier> spectrum disabilities and
dementia<http://health.nytimes.com/health/guides/disease/dementia/overview.h
tml?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-retardati
on/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-trauma/ov
erview.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/overvie
w.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_pages/g
arland-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/sunday/b
ecoming-disabled.html>
