Early last year, I published a story about my life with chronic illness and disability. I thought I did well, and used the correct terms to describe myself and other people with disabilities in a respectful and truthful way. But after my piece was edited it unexpectedly featured a teaser, which I first saw when it was published online.
To me it seemed that the new passage mainly consisted of the word, “suffering.” “She suffers from Ehlers-Danlos syndrome. She suffers from chronic pain.” My life was reduced to misery, as often happens when non-disabled journalists cover disability.
Most people living with disabilities don‘t spend their lives in agony; they merely have a certain condition or disability. And in this case nobody had asked me whether I felt like I was suffering. It was just assumed I did.
Veronica Wain explains in the book Documentary and Disability that words are the means to shape how the audience understands a community, but also how a community sees itself. It was strange to recognize that other people perceive my life inaccurately. Words matter. Representation matters.
My editor said he had heard that the word suffering wasn’t appropriate to describe people with illnesses but had forgotten. Not to say disabled journalists are perfect in this regard—there are many rules, and we make mistakes like everyone else—but, bluntly, we try harder because it affects us personally.
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