Friday, May 1, 2015

BADD 2015: Vesuvius on Wheels

About to leave the wheelchair-designated bathroom stall of a large discount store, I found myself eye level with a middle-aged woman wielding a cane. Under normal circumstances, I would nod in quiet greeting and be on my way. This woman, however, had other ideas. "Nice chair," she began and before I could respond, she launched into a diatribe about how she was going to walk until she fell over dead because her doctors advised her that going into a chair would shorten her life and didn't I miss being active and wasn't I terribly brave...

Better judgment dictated a swift exit. With images of lovely, smart wheelchair using people I have known swirling through my brain, I instead said with great clarity: "What A Load of  Crap,"
adding for emphasis that she should not be so invested in her doctor's flawed perspective since he or she was not interested in her long term mobility, strength or happiness but trapped in ideology that saw people in chairs as broken, a pervasive and toxic belief that people cling to out of fear or stupidity.

Then, on a roll, I asked if there were things she no longer did because mobility and fatigue were an issue. Reluctantly, Ms." I'll walk till I fall over dead," nodded her head. When I asked whether she participated regularly in sports, swimming, church or volunteer activities, the now silenced woman shook her head.

"My chair makes all of that possible for me," I said evenly, noting a glint of mist in her eyes...
"Look," I finally concluded, "A chair does not mean you are less than you were. It is a way to move in the world when you otherwise would not."

I left that interaction shaken. Upset still and always at having to deal with episodes of this kind, I soon found myself awash in memories...

Disabled since birth, it was not until I had to use a wheelchair just prior to turning fifty that life took a few interesting twists. One was an absolute absence of support. The physical therapist who ordered my chair advised that I go to the nearest indoor mall and practice. Nothing was mentioned about home modification, and my once cosy home became an obstacle course. Additionally, I found myself often alone since over half of those who were once friends fled for the illusory safety (read privilege) among the walking two-legged.

There were many nights I did not sleep. My closest girlfriend, whom I'd known since my earliest undergraduate days watched these changes and my flagging spirits and sagely suggested I find some women wheelchair users and talk to them. She also advanced the idea that people mourn changes in their lives, a healthy response, especially if they are to find different ways to live.

I  started reading blogs, trying to see who was out there who would be willing to talk with me. To my great surprise, I found WCD, FridaWrites, Katja, Wheelie Catholic, Diary of a Goldfish and others. The most steadfast of these was Beth McClung. She answered every question I ever put to her, sometimes with great humor. She sent post cards. I sent donations of stamps and other small things when I could. We spoke about many things, including where each of us had lived, and the mourning that my friend Pauline originally discussed with me.

Today, though Beth is gone, her razor sharp wit, penchant for analysis and humor come back to me, especially when I encounter people like the woman in that store, terrified but stoically sold on the ideas that disable ism thrives on: "otherness," symbolized most often by the wheelchair.

Rooted in the falsity that those of us with wheelchairs are pitiable, less than, limited and somehow less worthy if we cannot be "fixed," otherness and its attendant disable ism have become endemic, so woven into every facet of our institutional and cultural life that they shape individual attitudes, giving rise to perceptions few question. While laws help with physical access, their enforcement still largely reflect disable ism. Sadly, this is an attitude that those with disabilities sometimes assume, as Beth noted in several posts that I can recall.

When one night I bemoaned the changes wrought in life due to my chair, the reply I received was swift and along the lines of, "Your chair isn't the problem. It is a mobility device. If you'd rather be in bed or crawling around on your hands, I suppose you could, but your chair is a much better option."

She was right, of course.

I got out of the house, had adventures, wasn't afraid to open my mouth, e-mailed my legislators, took on disability inclusion and LGBTQ projects for my small congregation, and began sending cards to anyone I found who wanted one. I also took several opportunities to speak to med students in my community, all things I might never have done but for the changes in my life that led me to Beth and other bloggers. This week, as we commemorate the tenth anniversary of BADD, I tip my hat to all of those who write, share their lives and roll on somewhere...

To see more BADD2015 offerings, visit








2 comments:

  1. Thanks for this - sorry it's taken me so long to comment. Elizabeth was such an amazing woman and her absence is still very sorely felt. I'm really glad someone wrote about her today.

    Almost everyone I know who became a wheelchair-user as an adult - unless they had a spinal cord injury or something similarly dramatic where they were on their feet one week and couldn't walk the next - regrets waiting so long. I was daft enough to wait for a full year *twice* (the first time, after I began to use a wheelchair, my health improved so I didn't need it any more. You'd think that when things got worse again, I would simply hop back in the chair, but no. I was housebound for another year).

    Part of the problem lies with doctors. Obviously, walking has health benefits, but they don't supersede everything else - if a person is in constant pain, if they can't leave their house or if they're vulnerable to falling, stress or injury may well do them more harm than sitting down. But there's a great prejudice against wheelchairs. As someone with a complex chronic illness with many troubling symptoms, doctors are inclined to focus on my walking when for me, it is maybe forth or fifth on my list of health priorities.

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    1. Thank you for leaving such a nice comment regarding Elizabeth, Goldfish. I agree with your points about the doctors and I am sorry for what you went through. You seem happier and calmer now than you were when I began writing here and I'm glad for you if that is true.

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