When Supposedly Progressive Guides to Talking About Disability Get It Wrong

So I am very passionate about the language of disability. I really want it to progress to a place where people are not misrepresented or marginalized by the language used to describe them. So I get very frustrated when nondisabled people coopt the narrative and through well intentioned ignorance set the movement for inclusive language back several paces.

Take for example this article by Merrill Perlman published on the Columbia Journalism Review titled The Proper Terminology to Use When Writing About Illnesses.

The authors stated intent is to help others use more respectful language when writing about “illness”. She fails immediately because from reading her article what she means by illness is actually disability and they are not synonymous. Disabilities are the ones she most frequently references are not diseases and should never be discussed in such terms. While some illnesses can be disabling they have distinct differences from disabilities like paralysis, cerebral palsy or down syndrome. She does briefly reference how to address a serious diagnosis (cancer). She however never differentiates between disability and disease. People with disabilities are not ill and many of us don’t want a cure, which is good because for many of us a possible cure is unlikely to surface. Illness is closely linked to suffering a word she acknowledges should not be used in conjunction with disability. I have cerebral palsy and autism and neither of these is an illness. The flu that I’ve been fighting the last few days is. Please be aware of the difference.

Her only accurate insight seems to be in what actual words should be avoided. She  counsels against using words like victim and suffering. I can agree with that.

However, her disability specific advice leaves much to be desired. She starts out with physical disability, saying,

“As a society, we’ve gotten better at accepting terminology that is less slur and more description: “Developmentally disabled” is better than “retarded,” and while “physically challenged” is still not as common as “handicapped,” it’s thankfully more common than “crippled” nowadays. We mention that a child is “adopted” less often, and usually only when it’s relevant.”

Society may be aheah of Perlman here, the reason that physically challenged isn’t used as much as she’d like is because it’s genuinely awful. If you are a third party writing about someone else please never use it. As far as I’m concerned it’s as bad as handicapped. Disabled people don’t face challenges, We face barriers. The fact that there are stairs and no ramp isn’t a challenge it’s a barrier. The fact that able-bodied people often underestimate those of this with disabilities is a barrier. Framing our lives as a challenge justifies systemic barriers because it’s much easier to believe someone can overcome a challenge than a barrier. So in keeping with the fact that Perlman wants to help, I will offer a better term:

If you are in North America use Person with a disability

If you are in the UK, Ireland, New Zealand or Australia use disabled person*

The other passage I find problematic is this,

“Where we often fail, though, is in using terms associated with illness and infirmity. “Confined to a wheelchair” or “wheelchair-bound” have appeared more than 1,000 in Nexis in the first quarter of the year. Yet those give a negative associate to the person in the wheelchair. Simpler, and more accurate, would be to say someone “uses a wheelchair.” Even better, say why the wheelchair is needed: “She has used a wheelchair since she her legs were paralyzed in a diving accident 10 years ago.””

It starts out pretty good, uses a wheelchair or wheelchair user are much preferable to wheelchair bound. I get confused however about how it is simpler to just describe the disability. No it’s really not. It comes off as voyeuristic and unnecessary. Perlman even contradicts herself later when she says that disability shouldn’t be mentioned unless it is absolutely pertinent. I am sure there are times when it is pertinent to mention that a person uses a wheelchair but the reason why is entirely irrelevant. Needing to mention a disability is not the same as needing to rehash a person’s entire back story.

I respect Perlman’s intent with her article but I question the follow through. Language is so important to how the world around us is framed. It affects how people are viewed. I will close with some additional tips for third parties (nondisabled people) writing about disability.

Don’t just avoid physically challenged when speaking generally also avoid any euphemisms like “special needs” or “differently-abled”

Be prepared for the fact that the disabled community is very diverse and opinions on personal labeling may differ from political correctness. When referring to an individual, please respect personal labels.

When in doubt try and find answers from actually disabled people.

*For an explanation of why language differs geographically see here

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