Why Ableist Language Needs to Change | Opinion

It was like losing a limb. I was crippled by fear. Do not tamper with, disable or destroy the smoke detector.

How many times have you heard these phrases? Likely more than once, and probably not in the presence of a person who has actually lost a limb.

As an amputee since the age of four, I am particularly attuned to how commonplace it is to hear ableist language describing everything from economies (a "crippling" shift in the markets), to emotional and mental states ("hobbled" by grief), none of which have much to do with the realities of losing a limb.

Words—and how we use them—matter.

They allow us to recognize humanity in one another; they guide us on what to think and how to behave. When someone claims to be so sad it's as if they've lost a limb, or are experiencing phantom limb sensations, this is misleading. Using disability as a metaphor for disaster or loss only intensifies misunderstandings of what disabled bodies are able to do, what they are capable of achieving.

The act of amputation is not a metaphor for any other experience; instead, it is a singular, focused surgical procedure that triggers a temporary neurological blackout—which is why many amputees, myself included, experience phantom limb pains in the days and years and even decades after the limb is removed.

It's also a painful procedure, and pain is, in the purest sense, impossible to translate or quantify in a way that tells the truth about a situation. When ableist tropes are used in our cultural vernacular, it diminishes the truth of the experience for the roughly 2 million amputees living in the United States, with an estimated 185,000 new lower extremity amputations each year. The Amputee Coalition of America projects that this population will more than double by the year 2050 to 3.6 million.

If there are so many people living and thriving with limb loss, then why is it treated as such an anomaly? In my experience, it's in elevators where this lack of knowledge comes into play in the most intensive way. As the carriage shuttles from floor to floor, I am routinely asked: What happened to you? What's wrong with you? How far does the leg go up? And this utterly mysterious and prurient question to be asked by a stranger: Do you wear it to take a shower? Imagine being asked about the very intimate details of your body—and your personal hygiene—in public. Awkward? Absolutely. Rude? Also, yes.

Is losing a limb difficult? Most certainly, and it's particularly hard in a country where medical care and medical devices are astronomically expensive and prohibitive for many, and where representation of people with disabilities is either absent or problematic. Is losing a limb tragic? Not necessarily. Losing any part of the body is an immediate and permanent shift in identity, no matter how old you are, or what shape your body was in before the change. It doesn't mean your life is over, but it will need to be reimagined.

When people say, "I would die if I were you," while I'm standing in the grocery checkout, buying chocolate and Chardonnay. I am always taken aback; it's like a condemnation at best; at worst, some kind of subtle suggestion, and it burns any bridge of empathy to the ground.

Then there's this zinger (also delivered in elevators, in checkout lines, in movie theaters, at cocktail parties; and once, for me, at a faculty mixer): "Seeing you puts my life into perspective and makes me wonder what I'm complaining about." I used to say nothing. Now I say, "You probably wouldn't die. You'd probably figure it out."

To the second statement, I respond, "You don't know anything about my life, which is awesome, and even if you did, I'm not here to help you feel better for not being me." Awkward? Absolutely. Rude? I'd say necessary. What I don't say, although it's true: All of us are an accident, a decade, or a diagnosis away from living with a disability.

It's time to think about how we perceive ability and bodies and the link between the two. Disability culture is as old as any in the world. In the 1960s, disabled activists began demanding civil rights alongside other marginalized populations. Yet the change in cultural perceptions of people living in non-normative bodies is glacial at best. I have had an artificial leg for all but four years of my life, so that's 42 years: four decades of answering the same questions, now with different answers.

This is the only body I have, and I am its caretaker. I'm also a mother of two. I'm a professor. I'm a writer. I'm also an athlete, as well as an enthusiastic Peloton member, where I am part of a group called UNlimbiTED, started by the wife of a woman who lost her leg in an accident. We are parents, partners, children, doctors, nurses, writers, teachers, friends and athletes. We are people with extraordinary bodies living ordinary lives.

Emily Rapp Black is the best-selling author of Poster Child: A Memoir (BloomsburyUSA), The Still Point of the Turning World (Penguin Press) and Sanctuary (Random House). Her new book, Frida Kahlo and My Left Leg (Nottinghill Editions) will be released in June. Emily is currently associate professor of creative writing at the University of California-Riverside, where she also teaches in the School of Medicine.

The views expressed in this article are the writer's own.