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One Thing We Should Never Say to People with a Disability

By Wendy Lu on Tuesday July 3rd, 2018

Image: Tom Dymond

Breaking through the Barriers of Ableism

“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 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.

Disability is not always a burdenThere’s a common assumption that people with disabilities all want to be cured.

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.

Framing Disability as a Burden

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.

Dismantling ableismWe must stop assuming that all disabled people want a cure to ‘fix’ their disabilities.

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.

Eli Clare, 54, author of Brilliant Imperfection and based in the Green Mountains in Vermont, says:

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. Once a community of people is deemed defective, two things are most likely: either they’re targets for disposal or targeted for cure.

Desire for acceptancePeople with a disability simply desire acceptance and to be seen as ‘normal.’

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.

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

But according to the social model of disability, people with disabilities are disabled not because of their individual differences, but because of the systemic barriers we face in society. That includes everything from inaccessible buildings to hiring discrimination to a general attitude of resistance against disability.

While motivations for finding a cure varies widely among disabled people, Woodward says they often stem from a lack of accessibility and feeling isolated in society—which is a fault of systemic ableism, not the person.

Lack of accessibility and isolation in societyPeople with disabilities are disabled because of the systemic barriers we face in society.

In a perfectly accessible world where all disabled people are fully included in society and treated equitably, the pressure to conform likely wouldn’t exist. Everyone would have the freedom to exercise full bodily autonomy. Woodward says:

We focus so much on fixing the individual to fit into society, rather than fixing our society to be welcoming to all of our people.

On Curing Ableism

Although cure-focused narratives can be harmful, health care and access to treatments are still important. It’s true that cure has made a big difference in many disabled people’s lives.

Cures have saved lives and provided comfort for people who, for instance, live with chronic pain. But Alice Wong, 44, founder of the Disability Visibility Project, says it’s important not to frame cure as a moral and social good that guarantees a life without suffering. Wong, who was born disabled and lives in San Francisco, California, says:

There is a distinction between discussing the harmful rhetoric around cures and the legitimate desire for relief and treatment.

Celebrating diversityWe need to celebrate the diversity of bodies and improve accessibility. Image: Pro Infirmis
For Wong, receiving treatments like a spinal fusion surgery was helpful—but they weren’t cures. They only served to make her life better.

If I received positive messages from society as a child that I am enough, that my body-mind is perfect as is, I might not associate cures as a way to fix me. I might think of it as one of many choices that are at my disposal.

Rather than totally rejecting cures, the problem lies in how society prioritizes some lives over others, says Clare, who regularly speaks and hosts workshops on disability.

When cure functions as a type of social control or pressure to eradicate disability communities, it becomes the opposite of liberation. Especially for people whose disabilities don’t have cures, this mindset can make them feel trapped or inadequate.

Practicing Mindfulness

Cure-focused ableism, like other forms of discrimination, exists because society is structured to uphold people with privilege and deprive others of power, Wong says. But everyone has power, agency and value inside of them. Just because someone walks and another person uses a wheelchair doesn’t mean one is superior to the other.

Integrated classroomsIntegrated classrooms mean that children are more likely to see each other as equals.

If disabled people could fully participate in society, we can uproot all forms of ableism—including cure-focused narratives, Woodward says.

In education, that means teaching kids in integrated classrooms. When non-disabled children study alongside disabled children instead of learning separately from the ‘special education‘ classroom, they are less likely to discriminate and more likely to view their disabled peers as equals.

In the media, that means hiring disabled people to present their own stories to the public instead of publishing disability narratives from the perspectives of non-disabled people.

So is it ever OK for someone to pray or express wishes for a disabled person’s cure? Strangers should never offer prayers, wishes or suggestions for cures and treatments. But even loved ones need to be mindful. Woodward says:

I think it’s only appropriate if that’s what the disabled person wants, and they openly express that. It’s not for a mother to say ‘I know that my child wants to be healed,’ because autonomy means just that—the individual gets to decide.

 

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5 Responses to One Thing We Should Never Say to People with a Disability

  1. I don’t think non-disabled folk trying to offer help is a bad thing. In my opinion this article is pretty divisive and seems to pit disabled and non-disabled people against each other for no reason. Anger towards those who are trying to help but dont know the best way to do so isn’t productive or justifiable. Would you yell at a child for making a mistake when trying to help you? A better idea is to establish a dialogue and exchange POVs and try to work together to help disabled people. Let’s not be divided, let’s be United.

    • I understand your point of view on this! That said, the first step toward unity between those who are in an oppressor group (through no fault of their own) and those who are in an oppressed group (also through no fault of their own), is for those in the oppressor group to stop doing oppressive things.

      It is a favor to us able-bodied folks (or, more accurately, “temporarily able-bodied” – if you’re lucky to live long enough, you will likely accrue some “disabilities” as you age) when people give us information about the harmful nature of our often well-intentioned behaviors.

      This article is one such offer of information.

      It’s common for us able-bodied folks to take offense when given this kind of information. Your response is similar to those of many: “let’s be united, not divided.” What’s the problem with such a response? The problem is that people with disabilities are aware of things you do that divide you from them, even when you’re not. If you’re not willing to listen when they tell you what those are, you are saying, in effect, that you aren’t willing to “be on their side.”

      This is roughly parallel to people of an oppressed ethnic group telling you that they don’t like it when you refer to them using a derogatory term. Sure, you could feel offended: you didn’t mean to hurt them, so why are they treating you like you’re not their ally? But the message is not an attack; all they need is for you to say, “Oops! I didn’t know that hurt you. I will stop doing that. Thanks for telling me!”

      As it happens, the best way to be an ally is to listen when people tell you what hurts them. That’s how to be on the same side!

  2. Thank you for this beautiful, very sensitive article! Ableism and the pressure in society to show off “fit and healthy” bodies are lethal.

    @J. Z. Tyler: This article is not about whether “non-disabled folk trying to help” is good or bad. It is about society’s view on so-called disability (the word is problematic in itself, actually!!). And it is about how, by changing perspectives and focussing on society instead of on the individual, we can be part of the solution. We are not children “trying to offer help”, we are grown-ups and no one is yelling at anyone here. We need to learn to listen to each other better, ask in a sensitive manner whether help is needed before offering it only because we *think*’ it is needed. This way we may actually reach what you call for: unity.

    • Are there any blind people who would rather stay that way than see? Or deaf people? I am in constant severe pain with peripheral neuropathy. I need walking device to help me get around. I am sorry if it doesn’t suit your views, but I WOULD RATHER NOT BE IN PAIN AND DIFFICULTY WALKING!

      • My heart goes out to you, Scilla, in your pain.

        You make a good point: you get to want whatever YOU want!

        As I see it, though, the article is not saying that people with a disability should NOT want to be helped, etc. Rather, others should not ASSUME those people want to be changed.

        Our society assumes that all people with disabilities or illnesses feel the same way you do. So you don’t have to worry about people’s assumptions that anyone with a disability of any kind wants to be changed. That’s your right, and no one is challenging it.

        The underlying question here is not whether people with disabilities would like allies. The problem is that those potential allies too often assume that differences are themselves the problem, that disability is a stigma that people would naturally want removed.

        Imagine you were born with red hair. Suppose that nearly every day someone approached you with the attitude, “Poor Scilla! Wouldn’t you like some hair coloring to hide that ugly red hair?”

        The problem in that scenario would not be the red hair. It would be the assumption that red hair is ugly. This is the kind of problem that, in my opinion, Wendy Lu is addressing.

        It is the problem that many deaf people face, too. Deaf people can live rich lives—not in spite of their deafness, but because of the rich, cooperative cultures that grow up among the deaf. To answer your question, yes, many of them would not want to be “cured.” (If you’d like to learn more, I suggest you Google “controversy in deaf community about cochlear implants”)

        I can’t imagine anyone is telling you that you shouldn’t want to be pain-free and able to walk. But YOU get to be the one to decide whether you’d like to change – not a society that devalues so many types of physical and mental differences.

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