Advocacy / Arthritis / Arthritis Ashley / arthritis blog / Autoimmune / Awareness / book / chronic illness / Disability / pain / Uncategorized

The Imperfection of Appropriate Language: Discussing Disability is Difficult

I want to first start off by apologizing to anyone I may have offended in my recent article for A Woman’s Health Magazine (online version) and Women magazine (print version) entitled: For Some With Rheumatoid Arthritis, Beauty Really is Pain.

I enjoyed writing this article and was very proud of it, until someone wrote me and brought to my attention that I used a phrase which has in recent years been deemed inappropriate within the disability community. In the article, the perhaps-ignorant phrase “wheelchair-bound” was used. Both myself and my editors overlooked this politically-incorrect and potentially-offensive choice of phrasing. As someone who lives with disability myself, I would never intend to offend, marginalize, or further stigmatize the community of people with disabilities.

That said, I am still learning. I replied to the person who emailed me with their concerns. I was grateful that she brought this issue to my attention so that I could properly address it and explain it here on my blog as well as on the Arthritis Ashley Facebook page.

I will try to share my perspective as truthfully, transparently, and delicately as I can without furthering any hard feelings.

Let me start by saying that, as I’d mentioned, for what it’s worth, I live with several medical conditions myself. I am considered a disabled person by the state of Pennsylvania and I have a handicapped parking pass. I don’t call myself disabled or refer to myself as living with a disability very often, but the truth is that I do. Thus, I typically try to be sensitive and use whatever is the current appropriate and inoffensive language and phrasing surrounding issues of health and disability. I have written about disability rights and have written blogs more than once about ableism.

But, I’m certainly not an expert.

I also should note that I personally am not easily-offended by language or words. In the past, I’ve discussed, for example, that I really don’t care if you want to call RA “rheumatoid arthritis” or “rheumatoid disease” or “rheumatoid arthritis disease” or “autoimmune arthritis” or whatever. That’s just one example.

But, in fact, there are a few words and phrases that kind of bug me, that I see being used frequently online, such as crip or crippled. The #CripTheVote hashtag and initiative was an idea and a trend that in and of itself, I could get behind — but the word crip makes me cringe every time I read it. I don’t even like to refer to myself as disabled or handicapped.  I certainly would never refer to myself as crippled. But, although I don’t personally like those words, I don’t mind at all if others use them, if that’s how they want to refer to themselves. After all, I have a book entitled Sick Idiot: a title that could be deemed highly-offensive and politically-incorrect. But — here’s the thing: I think that people are within their own rights to refer to themselves however they wish, and if they want to “take back the power” of a word or phrase, then, good for them. There have been plenty of examples of this in linguistics, popular culture, and history — there’s even been legislation over it. Often these terms involve race or gender or sexual orientation, but the idea can extend to other issues, too. It is called reappropriation. 

The mistake I made in my article by using the phrase wheelchair-bound is that I’m not.

While I’m a member of the “disabled community,” I don’t regularly use a wheelchair, and so I should have taken the time, care, and research to try to better find out what word or phrase is the general preference of people who use wheelchairs.

I didn’t do my homework.

I used an archaic, outdated term that many could feel diminishes the freedoms that wheelchairs actually provide for many who use them.

I will say this, though. With followers from all across the world, I have learned that in different countries and different regions, and even within differing demographics, certain phrases are sometimes deemed more offensive or more acceptable than others. To me — and this is just my PERSONAL opinion — the intent and semantics is more important than word choice and syntax. Maybe that’s just because I’m a writer and a lover of language and I am simply used to seeing things expressed in all different kinds of ways, knowing that intention is often of more importance than the actual word or phrase in and of itself.

That said, while I didn’t intend to hurt anyone, I certainly do realize that words can hurt very much — I’ve written entire blog posts on this very topic, and have probably discussed it in my books, too. I know that some words and phrases can be deeply harmful, stigmatizing, belittling, or inappropriate, especially if taken out of context, or if the reader does not know the heart or the true intention of the writer or the person delivering the message.

I would never want anyone to feel discriminated against, oppressed, or offended.

I am not making excuses. But it is hard. As you all know, language is so fluid, and what is acceptable to some is not acceptable to others. The cultural norms and appropriate terminology in the medical community are always changing, and even as a patient, health writer, and patient advocate, it is hard to keep up with, especially when these norms and preferences vary for each of my followers and readers, for different cultures and for different generations.

If you follow me regularly, you know that I would never want to offend or cause hard feelings in any way, shape, or form. So I truly do apologize if my use of the phrase wheelchair-bound hurt or offended any of my readers, or even just rubbed you the wrong way.

I know how important proper representation is when it comes to advocacy, awareness, and education. And trust me — I know that words matter. Sometimes, I’m lucky to have editors catch errors like this with help from style guides from the NDA, ADA, and AMA, among others. Sometimes, though, things fall through the cracks. I’m sure that there are other words and phrases that I’ve used in past articles, blog posts, or even my books that may offend some of you. I’ll offer a blanket apology for those, too.

But while you can’t please anyone, I’d like to try to at least be respectful of as many of my readers and followers as humanly possibly. When you know better, you do better.

I’m not perfect, but I will try my best to perfect my language when dealing with sensitive topics. I know for that marginalized groups of people, or folks who are often discriminated against, from the community of people living with disabilities, to people of color, to the LGBTQ communities, to women, to people of different religions and cultures, the words and phrases and language surrounding important issues matter even more.

It was not my intention to be disrespectful or insensitive in this instance or in any other. I may misstep along the way, but my heart is in the right place. I know the road to hell is paved with good intentions. But please trust that my intentions are, in fact, good. I do not mean to insult, and, in fact, I’ve been transparent and diligent in sharing my personal journey and my personal truth for over a decade now. I’ve dedicated my adult life to advocacy and awareness involving chronic illness and chronic pain, particularly autoimmune and rheumatic conditions. I have recently begun to speak out more broadly to embrace the entire community of people who are disabled, but I am still learning the ropes. (*Note: I try to always use “people-first” language but to be honest, I don’t even know if “people who are disabled” is acceptable anymore.)

I don’t believe that I or the language surrounding disability will ever be 100% correct or please everyone. Like I said: language is fluid and constantly in flux. What is acceptable will always keep on a-changin’. But, at least for now, what I wrote was not acceptable and for that, I am sorry.

I emailed the editor of the magazine/website to change “wheelchair-bound” to “people who use wheelchairs” in the online version. Unfortunately, the print issue already went out, but my apology still stands.

Thanks for taking the time to read this blog, and, hopefully, the original article, despite its missteps and shortcomings!

I would also like to apologize from an accessibility-standpoint that all of my photos and videos do not have captions, closed captioning, or written descriptions. I’m working on trying to get better with this, as well.

Have a blessed day!

PS: Here are some resources about using proper language when speaking or writing about disability: 

http://www.aucd.org/docs/add/sa_summits/Language%20Doc.pdf

http://sudcc.syr.edu/LanguageGuide/

http://ncdj.org/style-guide/

https://www.diversity.pitt.edu/sites/default/files/Disability%20Etiquette%20Guide.pdf

https://www.cdc.gov/ncbddd/disabilityandhealth/pdf/disabilityposter_photos.pdf

http://nda.ie/Publications/Attitudes/Appropriate-Terms-to-Use-about-Disability/

 

One thought on “The Imperfection of Appropriate Language: Discussing Disability is Difficult

  1. So you know for 35 years I was a diabetic. I have always been a diabetic. When I wrote something about being diabetic, I received a great deal of email about not being diabetic, I was a person with diabetes. So today, I am a person with diabetes.

    I do not mind being a diabetic or a person with diabetes. But I do stand corrected and being corrected means I am wiser. Same thing here I think. nothing to beat yourself up about, it is not a sin, rather a mistake.

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