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“Don’t you want to get rid of your disability?”

It’s a question that doctors, photo editors and kids have asked me. Strangers have taken my hand and prayed for me.

Even some of my close friends, who know that I am a proud disabled activist who wears a tracheostomy tube, have admitted that they hope, one day, I can undergo a procedure to get rid of my disability once and for all.

“So you can lead a normal, healthy life,” they say. A part of me understands that people are expressing genuine concern for my health — but they don’t realize how painful and ableist it really is.

There’s a common assumption that people with disabilities all have a desire to or need to be cured, according to Stephanie Woodward, the director of advocacy at the Center of Disability Rights.

The idea of needing to “fix” or “cure” disability communities automatically assumes a negative relationship between people and their disabilities. It also perpetuates the misconception that disability is something to be ashamed of.

In reality, disability is a complex identity, and disabled people are multifaceted non-monolithic human beings. I am proud, like many people, to be disabled. When people suggest that my life would be better without my disability, it feels like they’re rejecting me as a person.

Unfortunately, cure-focused narratives have deep roots in systemic ableism and continue to persist today. When news broke out that Stephen Hawking had died, public figures and media outlets alike were quick to frame his disability as a burden.

The BBC’s timeline detailing Hawking’s life, for example, talked about how he had popularized science “despite debilitating illness.” Other media inaccurately described Hawking as being “confined to a wheelchair,” even though wheelchairs allow many disabled users to be mobile, independent and active members of their communities. That same week, actress Gal Gadot was blasted for tweeting that Hawking was now “free from physical constraints.”

While such hopes and peaceful wishes may be grounded in good intentions, they ultimately shame people with disabilities for their identities.

Instead of assuming that all disabled people want or need a cure to “fix” their disabilities, society must focus on dismantling ableism and actually improving accessibility and quality of life for all disabled people.

The Right To Bodily Autonomy

I once had an ears, nose and throat (ENT) doctor who said at nearly every appointment, “We have got to work toward getting that trach out of you.”

Not once did he ever ask what I wanted. I realized years later that perhaps it didn’t even occur to him that our goals didn’t align. That I didn’t want to get rid of my disability. After all, I’d had vocal cord paralysis and worn a tracheostomy tube for my entire life and it was all that I’d never known. I couldn’t imagine not having a trach, not being disabled.

For years, I wondered if something was “wrong” with me for being disabled and OK with it. It took a long time before I realized that I was internalizing the ableism that society was imposing on me.

“To be ‘normal’ is hard to define and impossible to catch, and it has so much power because disabled people are so often considered ‘abnormal’ and defective,” says Eli Clare, 54, author of Brilliant Imperfection based in the Green Mountains in Vermont. “Once a community of people is deemed defective, two things are most likely: Either they’re targets for disposal or targeted for cure.”

Strangers in public have asked Clare, who identifies as genderqueer and disabled, if he would take a cure for cerebral palsy if there was one. The misguided assumption, he says, is that his answer is a resounding “yes.”

“In truth, my answer has been that I wouldn’t take it because I have no idea who I would be without this particular body, with all of its tremors, all of its slurs, all of its tension,” Clare says.

Cure-focused narratives promote the harmful idea that disabled people’s bodies and lives are less valuable because of their identity.