Due to the weather and being forced to stand, the pain was so terrible I was literally weeping silently. I walked into the office and asked to speak to someone in charge. I explained the issue and suggested that they install a platform, which would allow scooter and wheelchair users to watch the game. Like any other parent, I paid for my child to have this experience and it is completely unfair, that I should be forced to suffer, so that I can participate.
The woman gave me a depreciating smile and informed of the cost involved. Of course they will look into it and maybe in the spring they can do something. Isn’t that lovely. You will note, that she made certain to point out that I was asking her to spend money. This is always the excuse given when the disabled demand that accommodations be made so that we can participate. Shame on me for not having a normal body, which can tolerate standing for an hour outside on a cold Ontario fall evening.
I’m not sure what I think. I don’t know whether I would go to see such a performance. I don’t know whether I would call it art. I do think that inviting someone to film you at your most vulnerable moments is a gutsy statement of human vulnerability. And it forces me to think about what I call art.
Usually, I think of art as being the result/product/performance of a skill that is not commonly shared among people. Marcalo asks us to watch a moment of absolute lack of control. Usually, art is in the execution of the extraordinary — a painting, an image, a photograph, the playing of a piece of music — we are asked to watch a moment of incredible consciousness and intention. Marcalo strips that down. The way her body will move in the grip of a seizure may well be extraordinary, but it will also not be intended or conscious. Marcalo’s very idea makes me think. And think and think.
I know I’ve mentioned in my first piece on service dog etiquette that many people make all kinds of errors in dealing with a service dog team, but it surprised me how many of them I face in hospitals and doctor’s offices.
The doctor who always stoops to say hello to my dog before he talks to me. (If he wasn’t a hard to replace doctor, I’d have a talk with him about it, but he’s of a specialty where I can’t afford to alienate my doctor)
The nurses who tell me that the dog is just fine where he is, and then struggle to straddle him or reach equipment across him, making all three of us uncomfortable.
The doctors I’m seeing for completely unrelated specialties who ask me what purpose the dog serves.
Many web pages on the UIUC campus have the same barriers to accessibility. These can be relatively easy to spot and correct, so check out your pages to see if you have [them]
In the news:
‘Mad’ and proud of it [Note: Comments are a mess.]
Ms. Costa is one of the founders of the Mad Student Society (MSS), a group that has been able to make great strides in getting people to come out of their shells, form friendships, become politically active and feel better about themselves.
The group, made up mostly of students who have experienced the psychiatric system, use a once-a-month two-hour group talk to discuss personal issues and day-to-day difficulties “without fear that you’re going to be charted or pathologized” says Ms. Costa.
For MSS member Joel Zablocki, peer support is about being able to discuss all kinds of subjects with others who are at your level and have gone through similar experiences. “You don’t have the strange power dynamic of a doctor-patient relationship.”
Always feel free to email me with links to posts you think are appropriate for Recommended Reading. If you put FWD/Forward in the subject line, I’ll see it sooner. firstname.lastname@example.org