Very insightful. This only half the article. == FIrst we don’t realize how important George HW Bush was by passing the ADA. It’s right up there with federal civil rights legislation, along with Nixon’s OSHA standards.
Second, I’ve recently come down with a cousin of carpal tunnel, RSI which is caused by repetitive motions, from a job which requires me to type all day. I like that this article said we should be “prepared for disability” at some point in our lives, instead of viewing them as a class among our population. (And an undesired one at that.)
- by Rosemarie Garland-Thomson
- Aug. 19, 2016
- 5 min read
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 withDown syndrome, 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, 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 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 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.”
If you are living with a disability, we want to hear from you: How has it affected your sense of identity and your interactions with others? Tell us in the comments or on Facebook. Replies may be referenced in a follow-up post.
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 that one in five adults in the United States is living with a disability. The National Organization on Disabilitysays 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, 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 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” 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 blindnessand 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.