There’s More Than One Correct Way to Talk About Disability

Halsey Blocher avatar

by Halsey Blocher |

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A few months ago, my brother came to my room to repeat what our mom had just instructed him to tell me. With a slightly sarcastic yet serious tone, he informed me that he could no longer refer to me as a wheelchair user, because one of his college textbooks stated that the correct verbiage was “person who uses a wheelchair.”

My mom and my brother both knew I wouldn’t entirely agree with this information, and they mostly shared it to see what my reaction would be. Yet while the intent was to amuse, it also prompted an intriguing late-night conversation about how we should refer to other people, particularly people in the disability community. It’s a conversation I’d like to continue exploring in this column.

The term “person who uses a wheelchair” is considered to be person-first language. In other words, it focuses on the person being referenced instead of on their disability. This way of speaking is intended to acknowledge someone for who they are as a whole person and not define them by their disabilities.

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Another common example of person-first language is saying “person with a disability” rather than stating that someone is “disabled” or referring to them as “a disabled person,” which are examples of disability-first language.

I mentioned that I don’t quite agree with what my brother’s textbook says, but please don’t think I am at all against the use of person-first language. I fully support it, and often use it, especially in the company of friends who prefer it.

The part I disagree with is the insistence that this is the only correct way to speak about someone with a disability. I don’t believe we can properly describe such a diverse group of people with just one type of terminology. Our disabilities, personalities, interests, and backgrounds are all unique, and we need more than one way of speaking to reflect our uniqueness and how we see ourselves.

I typically alternate between person-first and disability-first language when I’m speaking about myself, although I tend to favor the latter. While I find both to be entirely acceptable, I generally prefer to call myself “disabled.” To me, this doesn’t mean I’m allowing SMA to overshadow any other aspect of my life. It means I’m acknowledging its existence and showing that I want others to acknowledge it, too.

In a column titled “Actually, My Disease Does Define Me,” Alyssa Silva writes that she sees SMA as a part of her identity. People in the disability community are often taught that we aren’t defined by our disabilities, and thus we’re encouraged to separate them from our identities.

The idea that we aren’t defined by our disabilities isn’t bad. It’s meant to empower and free us from perceived limitations that might be imposed on us either by ourselves or by others, due to the presence of our disabilities. And for some, it does exactly that. Muscular Dystrophy News Today columnist Hawken Miller writes that viewing himself as not disabled helps him cope with Duchenne muscular dystrophy and keep a positive perspective on his situation.

Like Alyssa, I do consider SMA to be a part of my identity. Much like my faith, relationships, clothing choices, and career, SMA influences how I see myself and how others see me. I’m proud of the way it has helped shape my life and identity, and I want how I speak about myself to be representative of that.

Societal pressure to conform to the excessive use of person-first language or correcting someone’s chosen language can give the false impression that disability is something shameful to be hidden away, which Brad Dell discusses in this column on Cystic Fibrosis News Today.

Brad isn’t the only one to experience this. I’ve also had kindhearted people correct me when I call myself disabled, and well-intended campaigns have told me that the way I talk about myself is wrong. Even though it’s not the intent, it can feel isolating and invalidating.

So, what exactly is the right way to talk about a person with a disability?

That’s the question we started with, but instead, maybe we should be asking why we’re trying to limit the solution to just one correct answer.

I’m a disabled woman who supports person-first language, and I have wonderful friends who are people with disabilities. These are things we’ve chosen for ourselves, and none of us are wrong.

There isn’t, and shouldn’t be, a blanket terminology that fits everyone in the disability community. We’re all different, and that’s beautiful. We’re stronger because of it.

If you ever need to know how you should talk about someone, ask them what they prefer. That’s the most respectful thing you can do.

What kind of language do you prefer? Tell me why in the comments below.

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Note: SMA 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 SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Comments

Christina Trimnell avatar

Christina Trimnell

I don't like most lables, I'm Christina. I can't stand being called patient, unless I'm admitted to the hospital.

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Halsey Blocher avatar

Halsey Blocher

Hi, Christina! I totally get where you’re coming from with that one. I’m also not a big fan of being called a patient outside of a hospital setting. I’m disabled, but I’m not always sick. I have home nursing care, and I prefer that my home health nurses refer to me as their client in situations where they can’t legally use my name. They are, of course, caring for me, but most of the time, they’re doing it to maintain my health, not to help me recover from something.

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