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Becoming Disabled

August 19, 2016
Source: The New York Times

About the author: Rosemarie Garland-Thomson teaches English and bioethics at Emory University, where she is a founding director of the Disability Studies Initiative.

Roughly one in five Americans lives with a disability. So where is our pride movement?

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 dont 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 dont 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 Rosas Law, which replaced references to “mental retardation” 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 — 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 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 “Whats wrong with you?” Before I learned about disability rights and disability pride, which I came to by way of the womens movement, I always squirmed out a shame-filled, “I was born this way.” Now I [am] 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 Clintons 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 laws 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 dont 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.

Other essays in this series:

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