Saturday, May 16, 2015

More Adventures of the Accessible Home Variety

 It has taken me six years to adapt my small condominium apartment for life as a wheelchair user.  There are several reasons for this, the first being financial. The second involves finding competent people to do the work at affordable rates and the third is the general lack of help for people with disabilities with regard to financial assistance with what can be costly endeavors.

Beyond these, the biggest problem is finding adapted housing, whether one rents or owns. Builders tend ignore universal design unless it is shoved down their throats. The general mentality reflects the abelism found elsewhere in society. Add to that the belief that it is not as profitable, and we have a shortage of housing for what is a growing population as people age and others deal with the ravages of war, the consequences of accidents or the onset of illness. Those who are born with their disability must also, if they are afforded longevity, age with it which further extends the need for adapted and affordable housing.

During my sixteen years as a homeowner, I have met scores of general contractors, only one of whom had the necessary certifications required to be an aging in place specialist. As a result of dealing with overblown promises, poorly done work and repeated efforts to adapt things correctly, the dent to my personal savings has been extreme. My eleven-foot reach-in bedroom closet is a case in point.

It might be easy to dismiss a closet as inconsequential. However, everyone needs to reach their clothing, whether hanging or in drawers, and since I lack the funds for my own butler, it is I who must launder, sort and put away clothing and I who must dress myself. That said, this closet, like most of the rest of my humble abode, was never designed for anyone at wheelchair height, a concept some builders still fail to grasp, even in the age of the ADA.

The last licensed contractor who did anything in this closet was two years ago. Another of his colleagues, two years prior to that. Neither apparently got that I needed to reach or hang clothing from a seated position, leaving the shelving and rods too high. I struggled with a reacher until the shelves began to lean a bit, at which point I asked a handy neighbor for help.

After some initial problems with a pre-fabricated shelving and rod system which he and I abandoned in favor of a simple rod and shelf with brackets placed into dry wall, the new closet, measured for my height and the items that required hanging, was installed to my great relief.

That should be the end of this rather short narrative. Sadly, it is not. Last Saturday, half of the closet fell down. It appears that the studs are not evenly distributed through the back wall  and the anchors were insufficient to hold even light objects. My neighbor did install new anchors, but now I worry about things falling should I need to move anything in the closet in the future.

 A professional closet company and designer have been consulted, hopefully for the final attempt at dealing with this issue.

I should point out that my neighbor is a great guy and did everything he could to help. Additionally, the closet itself is not over brimming with clothing or other items and none are extremely heavy. Should anything fall around my head, it will stay where it lands. I also have had a problem with my accessible shower stall which took six months to resolve. The only benefit one derives from using a licensed builder is legal recourse should the job or attempt at remediation, fail.

Struggling with an inaccessible public sphere is bad enough, but struggling in one's home, whether rented or owned, is ridiculous and potentially debilitating over time. I wish more builders cared about the quality and consequences of their work and that all were required to take special certification to be aging in place specialists. They are sorely needed.

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