I had difficulty at first remembering the new way to speak about my disability. Instead of saying, “I am hearing impaired,” I learned I was supposed to say, “I have a hearing impairment.” The idea was to change the way I defined myself – I am a person with a disability, rather than a disabled person. This new way of speaking was for anyone with physical and developmental problems. So, it was a surprise to read a disability activist state that she and other activists prefer “identity first” language.
In “Disfigured: On Fairy Tales, Disability, and Making Space” Amanda Leduc writes not only about how fairy tales favor those who fit society’s ideas of perfection, but about her own life with cerebral palsy. She notes that she’s not writing a scholarly work on the history of fairy tales, but rather a personal take on how those tales affect people with disabilities. For example, in fairy tales, disabilities and ugliness are usually signs of a villain; if they define a hero/heroine at the beginning of the story, then they are something to overcome – just as the ugly duckling became a beautiful swan. Leduc’s book is challenging, informative and – when she tells her personal story – very moving.
What interested me in terms of this column was her different view on the way we should identify ourselves. She writes, “Identity first language (‘disabled person’) holds that the disabled identity is an important part of what makes someone a person in the first place, inexplicably bound up with how someone navigates the world. Person-first language, by contrast, argues that an individual must be seen as a person first and someone with a disability second (‘person with a disability’). The general consensus among disability activists is the person-first language, while well meaning, separates disability from identity and thus continues to malign disability and perpetuate the idea that it is a negative thing.”
Is a disability a negative thing? How we feel about that certainly makes a difference in the way we define ourselves. As I was writing this article, a copy of Hearing Health magazine came in the mail. The cover said it was “the pediatrics issue,” and talked about those “growing up with – but not defined by – hearing conditions.” I’ve heard that before from hard-of-hearing and Deaf community individuals: “We are missing nothing, we are just different.” Or, to speak about another population, some people claim they are not disabled, they are differently abled. Well, they would be if the world fulfilled Leduc’s visions: ramps everywhere for those who use wheelchairs. Movie and TV heroes would include those with a disability. Our differences would be celebrated. Instead of looking to overcome disabilities, the world would change so disabilities would just be another way for someone to live.
If you’re feeling a bit of a disconnection here, you’re not the only one. In many ways, my hearing impairment defines my life. I shocked a friend recently by saying I need this editor job because, as a hearing impaired individual with back and feet problems, I can’t be a receptionist in an office (I need a special phone to hear) or a greeter at Walmart (it’s difficult standing for long periods of time). So many parts of my life – social and physical – are affected because I can’t hear, but it doesn’t define my whole life. There are parts of me that have nothing to do with my hearing impairment. However, having that loss has changed how I view the world and, at times, how I feel about myself. In some ways, I am both “hearing impaired” and “an individual with a hearing impairment.” Where I differ from many is that I know what I am missing. I would love to have normal hearing, but I’ve had to adjust to life as it is because I can’t put my life on hold waiting for a miracle that may never happen. I can’t comment on what someone in a wheelchair feels: Do they wish they could walk, or do they want the world to be ramped? If the latter, is it because they know they will never walk and have accepted that, or because they feel it’s perfectly fine not to be able to walk?
Years ago, when I was dealing with other health problems, I read about a book written by a woman about living with chronic illness. She noted that she hated the one-legged man who ran a marathon because that gave people unrealistic expectations about what one-legged men could do. Leduc seems to feel the same way in her book: she wants writers to show that the traditional happily-ever-afters are not the only good ending. She wants stories where success comes because someone had a disability, not in spite of that disability. I appreciate Leduc’s suggestions and hope that someday everyone will be accepted as they are. We’re certainly moving more in that direction. I’m also glad that she feels successful because of her disability. However, if you gave me a choice – saying my hearing impairment and other ailments could be cured – I would opt for the easier not-disabled life.