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Tuesday, September 1, 2015

Yet More on Atrium

It seems that the Atrium fiasco is dying down. I ams still taken aback by the fall out. Two scholars left Northwestern, Atrium will likely never be published again, and a prestigious university has a black eye. This is stunning to me, akin to a bad joke, but this is no joke. I will ponder what took place for a long time. Last night as I watched the full moon rise I was reminded that when it comes to disability rights the pace of change is glacial. Linking sexuality and disability remains a taboo for some. Disability is a social beast few outside disability rights care much about. Exceptions exist of course. Why I am even friends with bipedal people.

There is no outrage on the part of others when my rights are violated. Oh, I get a lot of sorries, many awkward silences, reprisals for not disclosing my disability in advance, avoidance etc. What I do not get often is a warm reception and support from strangers. While it pales in comparison to what Alice Dreger has experienced, I have taken much heat over the last year because of my essay in Atrium. I do not know what to make of my experience. I do know the controversy that erupted clouded the fine work of other scholars who contributed to Atrium. I do know the controversy did not prompt a discussion about sexuality and disability. To this end, the Chronicle of Higher Education published a short opinion piece I wrote. Link:

Here are the final few paragraphs: I knew there was a possibility that my essay would cause controversy. But the controversy I imagined revolved around disability, sexuality, and the professionalism of health-care workers. Having spent most of my adolescence on various neurological wards, I am well aware that health care is a series of complex relationships among people with divergent backgrounds and expectations. That is why I think that sexual relations between patients and health-care professionals is inappropriate.
I wanted to write about a unique and little-known history. Medical technology was not revered as it is today, mostly because it was absent. In place of technology, and in the absence of a universally accepted approach to rehabilitation, health-care workers were wildly creative. The focus was on what a body could do at a given level of injury. Walking was dismissed, and new forms of navigating the world were embraced. No idea was off the table, if it could help someone function in the wider world.
Such creativity is largely absent today. With an average length of stay for in-patient rehabilitation about 55 days, people with spinal-cord injuries cannot possibly learn all they need to know about bowel and bladder control, skin care, and so on. Teaching those imperative, but mundane, life skills does not attract patients or generate revenue. Instead, rehabilitation centers market and brand themselves around various forms of expensive, cutting-edge technology or a focus on cure.
Those approaches perpetuate feel-good stories about people overcoming paralysis and learning how to walk, thus increasing even more the stigma associated with using a wheelchair. That is a social failure for newly paralyzed patients and their families. Thinking about what people with disabilities can do rather than what they can’t do requires imagination — which my "head nurses" had in abundance.

1 comment:

advisor Kat said...

I really enjoyed reading your article. When I was in my 20s, I dated a quadriplegic man briefly. I had met him after visiting my friend who volunteered for a rugby quadriplegic team. He was older than me and very handsome. I was inexperienced at the time and never thought of him as any different than any other guy. He was very confident and not embrassed by anything. He even proceeded to put in a catheter in front of me when we were barely dating. I never got too far with him because we dated briefly but I figured he was capable with other body parts Luke hands/mouth. As I said, I was very inexperienced at the time and woukd never think of asking if we would proceed to sex. His teammates did have children so I assumed he was quite capable too:) take good care!