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Sunday, September 28, 2014

Strange Days Make Me Weary

I have not written a post in a long time. In fact my posts have been few and far between. My move in August entailed many trips to and from the Syracuse area. The logistics of moving were daunting and aggravating. Yet I am really settled and progress has been made. I can drive to work and Wegman and many other places without getting lost. I have established some friendships that I truly enjoy. Work is great. I am teaching two classes this semester, one graduate and one undergraduate. All in all, I am quite happy. So why no posts? Two reasons: First, on the first week of work I developed a minor wound on my ass. I was so excited teaching I did not relive pressure often enough during the day hence I developed a small wound. The wound took two weeks to heal. My rational brain knew the wound was very minor. Smaller than a dime. Zero depth. A really minor issue. But as paralyzed people can attest a minor skin breakdown can blossom into a life threatening wound in a shockingly short period of time. My problem was not healing the wound but the trigger affect it had on my mental health. My year in bed in 2014 has left me with visible and invisible scars. The most minor wound sends me reeling. My judgement is impaired and my mood turns dark--as in situational depression. I was not a happy camper. Spending every possible moment off my ass put me in a somewhat dependent state. This resulted in many nightmares. Friends came to the rescue both on and off campus. I essentially lost a month. It took two weeks to heal and two weeks to build back my sitting time to typical.

The second issue that prevented me from writing was a lack of desire. I was weary. Weary of educating people about disability. This overwhelms me at times. Every day I read one depressing story after another about disability. I do not go out of my way to find these stories. They abound. A "wheelchair bound" person is struck and killed by a car. The lack of curb cuts forced the man into the street. A paralyzed Detroit rapper escaped a gun fight by crawling out of a building in fear of his life. The police initially refused to give him back his wheelchair and later admitted they lost it. He is carried by his brother now. I read about a blind man and his guide dog that were refused service in a restaurant. A women using a wheelchair got on a NYC bus and passengers started verbally abusing here because they had to remove their packages from the one area she could occupy. For me, I parked in Syracuse recently and when I returned to my car a person had parked so close to me I could not get in. I waited almost an hour before calling a friend who drove from her home with her son. She backed my car up so I could get in.

Most people with a disability I know experience periodic weariness. The same can be said for parents who raise a child with a disability. Heather Kirn Lanier who maintains the blog A Star in her Eye wrote about how the size difference with her two young girls, one typical and the other with Wolf-Hirschhorn Syndrome leads to rude and intrusive questions. Link: She wrote:

Maybe you’ll think I’m not generous enough. Maybe you’ll think I should engage more fully with a stranger’s questions, take them as an opportunity to explain my daughter. I would probably think this about myself if I were you. But reader, I’m tired. Tired of hearing “Twins?” at least twice when I leave the house with my girls and tired of strangers demanding that I answer. I’m tired of the confusion my honest answer brings, and tired even more so, tired especially, of people commenting on the bodies of my children in ways that most people do not comment on the bodies of most adults. “You’re so short,” I never say to anyone. “My, aren’t you wide for your age,” or “Wow, you’re so old/skinny/stocky/loose-in-the-hips,” I never, ever say. These lines of questioning seem like demands that I answer up for my family’s difference. They feel like tourism encounters, in which the questioner is the tourist, and my family is the tourist’s unique experience to have. Guess what I saw today? A three-year-old who was smaller than her one-year-old sister. These questions turn my family into a walking “See the Smallest Woman Alive!” show. Suddenly we are standing inside a box with a peephole, even while I thought we were at the farmer’s market trying to buy butternut squash.
I can relate to the above at the core of my being. Weary. Oh I was ever so weary until yesterday. A close friend offered to watch my my beloved lab Kate over night so I could get my bike. The bike takes up the entire back of my car and Kate cannot fit in. The alternative, a hitch, is too expensive to buy and install on a car with 115,000 miles. On the drive rather than thinking about work my mind was stuck in a loop. Why has the ADA failed to resonate with the masses of bipedal people that have a hazy idea a law was passed a long time ago and as a result all my problems were solved. Evidence of the success are little blue wheelchair logos signs that we see daily. The fact such signs often lead to nowhere is dismissed. In short, I remain stuck educating the population one by one. Given how resistant many people are to learning, and add in a  healthy dose of people that think disability rights is political correctness run amuck or an unfunded Federal mandate, I need about 50 life times to educate the population. This is a counter productive mind set. It resulted in me reading and discarding many possible topics I typically post about. The proverbial bridge was damned and was thankfully blown up yesterday by my friend that watched Kate. Kate is a wonderful dog but she has always been quirky. One of those quirks I am responsible for. She does not do steps. In fact she is afraid of stairs. I am the flawed or responsible owner and trainer.  I see stairs as a needless obstacle. I saw no point in teaching Kate how to navigate stairs. In retrospect this was a mistake. Kate can go up and down stairs if motivated and greatly encouraged. This is a real pain in the neck and takes time.

Why am I discussing Kate's refusal to go up and down stairs? My friend that took care of Kate lives in a  typical house. That means there are stairs to enter and stairs to go up to the bedroom and office.  Stairs did not enter my realm of my thinking when we figured out the logistics of one night pet sitting. Stairs never entered my thought process. We chuckled about this and when my friend dropped off Kate she said "See. You did not think of stairs! In much the same way I do not think of ramps or lifts or elevators or accessible bathrooms". Oh how easy it is to forget about the needs of the typical bipedal population. Heavy sarcasm here. Oh how my heart breaks. Joking aside, education is in fact important. Exposure to different bodies, atypical bodies, requires others, typical others, to think. We humans are hot wired to notice difference. Deep inside our animal brain is the fight or flight response.   I get the curiosity. And here is the rub. Can curious people think a bit before they speak? We people with an atypical body have not been put on the earth to inspire you (more sarcasm). We are under no obligation to answer rude and intrusive questions. For example, please do not ask me if I can have sex. Do not comment on how weird body is. Here is a good rule of thumb. Think about what you are asking. Would you ask a complete stranger with a typical body the same question? The answer is most likely no. Think about this. Then think about the utter lack of respect you have displayed. Curiosity is fine. If you have a good question ask it. Good questions are based on reason and relevance. Idle curiosity is unacceptable.


Rebecca Garden said...

The reason I teased you about not thinking of us bipeds, was to emphasize a distinction I made in our Facebook exchange the previous day. When I posted a notice about a movie screening at a local venue, you asked if it was accessible. When I said that the website didn't mention access, you said that they were simply ignoring disability. Thinking of my own failure to anticipate different kinds of disability access when I first started organizing events, I suggested that this may be a case of ignorance rather than deliberately ignoring. Given that you didn't anticipate the problem Kate would have in my house with stairs, you might see that sometimes the fact of embodiment makes it hard to cover all the bases of access. I agree that when I post a notice about a movie I should address accessibility--not only wheelchair access but captioning and audio description. But what else am I missing? And you know that I am lobbying hard for disability access in other arenas. So why do I sometimes forget about it? Am I deliberately ignoring or just privileged enough to forget? But then were you deliberately ignoring other forms of access or just are not as tuned into them? I can't imagine how exhausted you must be with having to educate those of us who are nondisabled. I do think that sometimes it is simply ignorance not deliberately ignoring (this is more about the gallery than me). However, if this seems like too fine a point in the face of so much discrimination, I can't argue with that.

william Peace said...

Rebecca, Ignorance can take many forms. Some days I am just spent and find the utter lack of information about access defeating. Every time I go to a new place I need to think. Every time I want to go to a sporting event I need to think and often call a phone number, wait on hold for a long time all to find i=out if I can get in the door. Why is this information not readily available everywhere and easily accessed? You forget because you are human. Disability is not part of your existence. You obviously deeply care about disability rights and are on the front lines of advocacy. I appreciate this more than words can express. Ignorance versus ignoring is not a fine point but one of interest.