A Study Guide on Disabled People, Written by a Problematic Person With Disabilities

Here’s what you need to know about disabled people.

First, don’t call them “disabled people” unless they want to be called disabled people. Or people with disabilities. Or neither.

I don’t call myself a disabled person, personally. It’s not because I don’t support the community or consider myself an activist. It’s simply because I haven’t figured out how I identify.

People in the Deaf community don’t always consider themselves disabled because they fought so long and hard to prove to mainstream society that they are of equal value. This is culturally and historically relevant. Recently, I’ve seen more Deaf community members posting about how this line of thinking could be problematic because it might be accidentally ableist, despite how oxymoronic that sounds in the light of awareness. I see that point, too.

To the “outside world” (because, yes, if any part of you identifies as sick or disabled, you are unified, if anything, by being considered “on the outside”), I am probably regarded as disabled. My needs are not the assumed needs, and so, to the metaphoric You of the world, I am probably not in the We.

Not everyone wants to be defined by their illness (some people with cystic fibrosis prefer person-first language, for example, and others love the moniker “CFer” or “cyster” instead), and not everyone You identify as disabled is ready to identify by your terms (like me). And it’s not because disabled is a dirty word. It’s because I want to choose my own for a change.

It’s best to ask before looping someone into whatever category you think they fit in. Ignorance comes from the silence that falls after a question never spoken.

(Courtesy of Carousel Pictures, LLC)

But even if I am not the official voice of disabled people, or even the official voice of Deaf people, or deaf people who don’t identify as Deaf, or Deaf people who do identify as disabled, I am sick. And sickness makes me different. And difference makes me qualified to explain a few things about what the metaphoric You need to know about the metaphoric We. Don’t consider this an attack; consider this a study guide.

First (or, technically, second), we hate The Face. It’s the face that someone makes when they talk about someone who’s recently become ill, or been in an accident that’s left them navigating the world in new ways, or had a baby with anything other than the perfect Apgar-4-Life.

We could say that The Face comes from a place of compassion initially, because it does. (Sometimes we need time to adjust to an accident, loss, or failed expectation.) But eventually, when The Face becomes the defining thing we do when talking about someone who is disabled, sick, or different, we become The Discrimination instead.

Pity and compassion are two very different things. Some people in a wheelchair may look differently than you physically, be unable to communicate in exactly the way you think they should, and have a higher IQ than you. Some don’t. Neither deserves your pity. We shouldn’t have to fit into our hearing and abled lens of what warrants merit and worth in the world to avoid The Face. (“They have cerebral palsy, but they’re incredibly smart.”) We deserve the same face you give all people because … we are all people.

I prefer questions to stares. Not everyone does, of course. Some of us want to be the person with the neck brace or the cane in the subway who doesn’t have to explain their existence to you, or why they are, in fact, “old enough” to move that way, without you interrupting their daily life. A good rule of thumb is: If you wouldn’t have talked to that person in the first place, had you not noticed their difference (if you weren’t simply about to say, “Crazy about this weather, eh?”), then you probably shouldn’t talk to that person.

This study guide was meant to be a lot longer, but I have an 800-word limit. Besides, there aren’t enough words in the world to capture all of the perspectives of people we need to be reading, listening to, and asking about regarding the topics of sickness and disability.

So when in doubt, don’t put words in someone else’s mouth (or on someone else’s body). Choose your words and faces carefully. And remember:

Everyone deserves exactly the same as what You give all people because …

We are all people.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.