Thursday, September 15, 2016

Call Me Disabled, or: How I Learned to Stop Worrying and Love the Word

I first heard about the movement to do away with the word "disability" ten years ago from a peer in California. His problem was with the prefix "-dis" which according to most dictionaries means some version of "a negative or reversing force." I don't quite remember what he had in mind to replace  "disability" with – it might have been "differently-abled," "uniquely-able," "special needs," or even just "ability" – but I remember being supportive, nodding in agreement, and wishing him luck in that struggle. After all I was eighteen, fresh out of the Youth Leadership Forum, and filled with tremendous pride in this community of which I was a part. So if my disabled friend wanted to get rid of the word "disabled," I thought more power to him! But I also remember thinking as time went on, "Is that really the most important issue affecting people with disabilities? What about attendant care? What about people still locked away in institutions? What about accommodations in school?"

Several recent experiences, culminating with the non-disabled host of a radio program about the Americans with Disabilities Act (ADA) devoting airtime to articulate why we should replace the word, have brought the issue back to mind, and I have come to believe that the words we use to describe ourselves are more important than ever, only I believe we instead need to embrace the word "disability" and discard the others. Here's why:

First off, I adhere to the social model of disability, which means that I am not disabled by Muscular Dystrophy but by the society that refuses to include me. In this way, my actual "disabilities" are stairs, heavy doors that don't open automatically, unlivable personal care attendant wages, the lack of affordable, accessible housing, the cost-cutting practices of insurance companies and government agencies. This list is by no means exhaustive, but the idea here is that if these problems did not persist in my life, I would not feel "disabled," and I honestly wouldn't even think of myself as "disabled." And if we do away with the word disability in favor of a soft alternative with an opposite meaning, we may risk losing this social perspective which is at the core of the disability rights movement.
 Holding my hands up in terror as I sit in the shadows before a steep staircase.
I think the stairs are the real problem here.
Disability is more than just a word. It encapsulates a movement, a culture, and a source of pride for the millions of us worldwide who identify as members of the disability community. When I hear the word disability, I feel good because it refers to my brothers and sisters and some of my greatest role models and friends. Taking ownership of the word – and the identity – is akin to showing solidarity with the community and helping to preserve its history and culture. Moreover, proudly using the term, rather than skirting around it, actually strengthens the community, validates its experience, and shows people without disabilities that a disability is not some terrible, scary, or shameful thing. Disability is a fact of life that nearly everyone will experience at some point in their lives, so it benefits everyone when we make the world a more accessible and inclusive place.
On my first ADAPT action. Disabled and proud!
But isn't the word disability necessarily negative? In short, no. I don't believe disabilities are viewed negatively because they're called disabilities; they are viewed negatively because they have been represented that way and thought of in that way for as long as we can remember, and everything from books and TV shows to movies and other media reinforce that perception. If we simply change the word, the ableist structures that oppress us will persist, especially if we distance ourselves from the label of disability at the prodding of those without disabilities. We need to attack ableism at its core, and we do that by shouting "disabled and proud!"
A blast from the past: long-haired,
18-year-old me and stranger dog checking
out the accessible entrance.
Of course this is only one disabled guy's opinion. Ultimately I believe each individual should determine how they personally want to identify – be it "unique ability," "disability," person first, identity first, or not at all – as long as they have complete autonomy to do so. But if you call me anything, please call me disabled.


Feel free to share your own thoughts in the comments section below, or explore the various perspectives on this complex issue by reading these other articles:

http://www.bbc.com/news/blogs-ouch-34385738

http://www.npr.org/sections/13.7/2016/02/25/468073722/disabled-just-saytheword

https://themighty.com/2015/05/why-i-dont-like-the-word-disability1/

http://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/

4 comments:

  1. Thank you for your sharing your thoughts Eric. This is an issue I struggle with constantly, and am never really satisfied with how it is handled. Your comments have helped me as I am sure it will continue to be a hot topic for me.
    Gail

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    1. You're welcome! And I agree - it's a complicated issue and disability may not always be the most accurate description when in reality everyone has different strengths and weaknesses. We really do exist on a spectrum rather than two exclusive categories of disabled versus non-disabled. But until we become a wholly inclusive society, I think disability may be a more useful term than we often give it credit. Most important though is that we show pride in who we are regardless of the words we choose.

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