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Becoming disabled

Learning to live with disability means accepting the limits of your body, and recognising you have rights to interact and engage with the world.

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 LGBT rights movement have also taken hold.


Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become non-disabled. PHOTO: AGENCE FRANCE-PRESSE

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 recognise someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don't conceptualise 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.

A person without a disability may recognise someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don't conceptualise 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, 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 two-year-old boy with dwarfism 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 is the most common form of short stature or that most people with the condition have average-size parents. More important, she probably did not know how to request the accommodation, 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 ageing.

The World Health Organisation 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 Centres for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability.

The National Organisation on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the US, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of ageing and learning disabilities emerge and grow, so does that number.

Disability growth areas - if you will - include diagnostic categories such as depression, anxiety disorders, anorexia, cancers, traumatic brain injuries, attention-deficit disorder, autoimmune disease, spinal cord injuries, autistic spectrum disabilities and dementia.

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 some time 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 learnt 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 recognised 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 offence. When I lecture about disability, someone always wants to know - either defensively, earnestly or cluelessly - the "correct" way to refer to this new politicised 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 "feeble-minded" are outdated and derogatory. Many pre-Holocaust eugenic categories that were indicators for state-sponsored sterilisation or extermination policies - "idiot", "moron", "imbecile" and even "mentally retarded" - have been discarded in favour of terms such as "developmentally delayed" or "intellectually disabled".

In 2010, President Barack Obama signed Rosa's 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 learnt 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 learnt 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 workspaces steadily transformed so that people with disabilities came out of hospitals, asylums, private homes and special schools into an increasingly rebuilt and reorganised world.

That changed landscape is being reflected politically, too, so much so that when Mr 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 centre.

Mrs Hillary Clinton's efforts early in her career to secure the right to an education for all disabled children was celebrated; Mr 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 non-disabled.

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.

NEW YORK TIMES

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

A version of this article appeared in the print edition of The Sunday Times on August 28, 2016, with the headline 'Becoming disabled'. Print Edition | Subscribe