Why calling myself disabled gave me freedom and community
Disability conjures up a specific picture for many people. Usually a white man, middle-aged, using a wheelchair. Maybe he was injured at work, or is an amputee. He is certainly unhappy, maybe divorced and definitely resentful of the life disability has brought him.
If that was the image you saw when I said disability, I don't blame you. TV commercials, television shows and government policy all consider disability narrowly, a singular experience that contains only hardship and misery.
However, the World Bank estimates over 1 billion people are disabled worldwide, and only 5 million of those use wheelchairs, either partially or full-time. I can assure you, not all of them are unhappy. I didn’t call myself disabled until last year, even though I had been diagnosed with an incurable illness four years before that. That stereotypical picture of disability was the one I grew up with too, so if I still had working use of my legs, and could hang with friends on the weekend, was I really allowed to call myself disabled?
There is no international register where you sign up to be called disabled. Medical professionals are unlikely to describe you as that either, because even doctors can be ableist, especially when they finally realize they aren’t going to be the one to cure your chronic, untreatable illness. Disabled, to them, doesn’t look like me. They regularly tell me I could “try and walk a little more,” even if I know it causes me immense pain. More than one person at the hospital has asked if my wheelchair is "just a temporary thing." Their displeasure in seeing a young woman in a wheelchair is obvious. They can't fathom that I, with my long blonde bob and cowgirl boots, am someone who needs regular treatment, so their minds quickly jump to, "it must be all in her head."
The reluctance to associate myself with the word was not only about not feeling sick enough. It is a recurring message, from doctors and strangers alike, that disabled people can’t be young, can’t be fashionable, can’t even be happy. The misery people project onto wheelchair users and disabled people as a whole, comes from a place of ignorance and fear. Non-disabled people are afraid of becoming us, because they only know the stereotypes they have seen before.
After finding communities online and spending time with people who had similar and different illnesses to mine — all of whom called themselves disabled — I was forced to consider the word more as a political stance, a label that indicates to others that I am permanently sick and I am not ashamed about it. After letting myself use this word I thought was taboo, I felt lighter. I was able to give myself a break on days where my body wouldn’t do what I wanted it to do, to feel OK about using special assistance lines and the disabled bathrooms. I needed those things long before I used the word, but something switched inside me once I got used to the feeling of saying it aloud: “Excuse me, can I have the key for the bathroom? I’m disabled."
Only 32 years ago a group of disabled activists hauled themselves up the Capitol building stairs to fight for recognition. The Americans with Disabilities Act was a piece of landmark legislation that forced those in power to acknowledge that disabled life is worth protecting. It has not been smooth sailing since then by any means, as ongoing mishandling of the COVID-19 pandemic continues to kill immunocompromised and disabled people at an alarming rate, and the treatment of disabled people in workspaces and public places continues to illustrate society’s feelings toward us: We are deemed burdens.
However, what those uncompromising activists did was illustrate, with both their bodies and minds, that disabled life is worth living. They taught me that identifying as disabled is an act of resistance and continues to be so, in a world where we are still viewed as less than. Calling myself disabled gave me the key to a huge and varied community, a chance to understand the myriad ways disabled people live and survive, to build a group of internet friends who know what it's like to miss a concert for the third time, to complain about rude nurses and local shops without elevators. Saying disabled out loud taught me that even if other people pity us, we will continue to exist despite them, and uplift each other in the process.
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