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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6 responses to “When Supposedly Progressive Guides to Talking About Disability Get It Wrong

  1. Thank you for this, Kim. My intention was not to offend anyone, or require people to use certain terminology. It is to alert writers to think about the words they are using, and not revert to stereotype or language that is unintentionally harmful. Different people (and groups) prefer different terms: is someone black? African-American? Mixed-race? I regularly warn that things like race, religion, physical or emotional state should not enter into any communication unless it is relevant and the relevance is clear to the reader. And I regularly suggest asking the subject what terminology is preferred. I did not mention those specifically in this column, and I should have.

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    • Thank you for taking the time to read this. I would like to address your comment about different people preferring different things AKA “You can’t please everyone all the time. This is technically true but is also often used as a tactic to silence marginalized people. Your piece addresses the issue of outsiders talking about a marginalized group and personal preferences should be respected when speaking about individuals but there is language (though possibly imperfect) that is widely recognized as acceptable when referring to disambility generally. You used none of them and in fact sided with an increasingly unpopular term “physically challenged” Some individuals may prefer it but I assure you, it is not a generally liked term. I am not just saying that because it is not my personal preference as an actually disabled person. I am saying it as a disability academic who has done academic research on the language of disability. My own personal preferences do not fall in line with the most commonly accepted guidelines and I did not advocate for their universal adoption, though I have in a previous post explained and defended my choices.
      Your advice falls more in line with defending a minority of disabled people’s preferences and advocating their universal application. I am advocating for language that is more widely accepted and is not tinged with the same negative connotations for the greatest number of people.

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  2. “Challenged” implies a choice and the need to “try harder”.
    “Differently abled” implies the existence of a compensating factor.
    “Special needs” implies that my needs are not basic human rights. (Frankly I think this term applies more to temperament.)

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  3. Goodness, yes, that was a weird article. Good analysis on your part.

    ‘Many usage authorities prefer to say that someone “got a cancer diagnosis,” not “was diagnosed with cancer.”’

    Erm, what? I’ve never heard that in my life. Her suggested phrasing is possible, but it’s often clunky and offers no advantage.

    You’re right that disability and illness are not the same thing, but they often overlap, and we often end up in the same community. I was curious as to how many people want a cure, so I asked around my friends. With physical disabilities, the sort which could be curable (I have severe ME/CFS, for instance), everyone I knew wanted them gone. Opinions were more mixed on mental illnesses and neurological differences. Some of us wanted them gone – I’d get rid of my PTSD in a shot – but many people felt that they wouldn’t be them without their mental illness, and in particular were concerned about losing creativity. It’s definitely not something everyone disabled or chronically ill agrees on. I feel it’s a problem if you rely solely on the social model, as I’ve seen many followers of that declare that we are all perfectly happy being disabled and wouldn’t have it any other way. That’s simply not true of everyone, and while it’s more common with certain disabilities such as Deafness, or neurological differences, I suspect it’s a minority opinion in the disability community.

    Meanwhile, you can want your disability or chronic illness to be cured while still wanting the media to stop using cure narratives, which make it sound like we won’t be real people unless we’re cured. I’m also sick of seeing them as plot points in TV and film, or articles about disabled people. How we became disabled, and how we stopped being disabled, whether through a cure or death (“tragic” should have definitely been on the avoid list in that article) needs to stop being presented as the only interesting thing about us. I get asked about those issues a lot, and frankly I’d rather discuss my hobbies or my friends or other interesting aspects of my life.

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  4. I love your blogs and am surprised and disappointed at your apparent lack of understanding of disabling illness.
    No, disability and illness are not always equivalent. But some long term illnesses are disabilities in every sense of the word. Some disabled people ARE ill, by definition. Furthermore, the delimitation between “healthy disabled” and “sick disabled” is far from black and white, with symptoms common to chronic illnesses often featuring in other impairments, giving shared experiences, barriers and solutions which are irrelevant to specific diagnosis/impairment.

    I find it deeply problematic that many disabled people wish to distance themselves from a whole section of the disabled community, even going so far as to try to deny them their identity as disabled people. Is it that sick disabled people don’t fit the narrative they wish to portray?

    You strongly reject the notion that suffering is intrinsically linked to disability, yet are happy to say it is “closely linked” to illness. Have you paused to think that people living with chronic illness might find that objectionable, even offensive?
    I certainly did, just as much as when people think I “suffer” from “having to use a wheelchair”. It felt exactly the same. You are ironically guilty of doing the very thing you object to when non disabled people judge disabled people’s lives as necessarily bad.

    You tried to compare your disability to the flu as an example of the difference between illness and disability. But this is a red herring. I could do the same with my own chronic illness and flu. An illness which is a disability and a short term transient illness are two very different things and can’t be compared let alone confused. To use the short term illness to dismiss long term disabling illnesses is disingenuous.

    The author of the piece you were critiquing used poor examples. Since the piece was supposed to be about illness she should indeed have stuck to illness examples. That is setting aside the other problems you covered. But I sadly found your own attitude to disabling illness almost as problematic as the failings of the original article.

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