I am not responsible for your discomfort

I am still thinking about the fact that we as a society are still more concerned about protecting the sensibilities of the non-disabled than the rights of the disabled.

Anyone with disabilities will have a whack of stories to tell you about fucked up encounters with the temporarily abled. My friend Preston, who is blind, had some really weird stories from when he went to Germany this summer. In the airport his cane was x-rayed no less than three times, and when he went to board the flight his cane was actually taken away. What did he do to protest? He deliberately walked into a wall. He sees shapes and light, so he knew it was there, but he’s a cheeky guy who isn’t afraid of confronting people with their own weird shit around his disability. When he was in Germany people kept buying him beers because they had never met a blind person before, most of them are kept out of sight of the general public. Sometimes even we forget how different his life is. Over the holidays my cuz and I dropped by his house one evening and all his lights were off. We weren’t sure anyone was home, but he was puttering around in there. None of his roommates were around, so he didn’t need the lights on.

And I also think of friends I’ve had who have been in wheelchairs and how people assume they can push them around without even asking if that’s what they need at that moment. A woman I mentored in video even had someone say “Aren’t you glad you brought your own chair” when she was at an event with limited seating.

Having an invisible disability is weird too, I can pass if I have to, and a lot of people with M.I.’s (mental illnesses) keep it extremely quiet so as not to deal with the stigma that comes along with it, believe me, everyone is always surrounded by people with mental illnesses, we’re a quarter of the population. But I’m not the kind of person who tries to make my life easier because of other’s prejudices. I’ve had so many stigmatized identities already that one more was like, “okay, I’ll take this fight on too, may as well.” If people ask me why I hate Montreal I’ll say because Montreal psych wards suck. If people ask why I was in the psych ward I’ll own up to the fact that I had a major manic psychotic episode. If people tell me I’m not really crazy because I’m too smart or I look normal or whatever I will emphatically assert that I do indeed have this particular disability.

I’m kind of in your face about my disability, because I think the more people see functioning “normal” people with mental illnesses, the less prejudiced they will be. And it’s true, we’re everywhere. CEO’s can have bipolar disorder, along with artists, writers, thinkers, teachers, high level politicians, PhD candidates and filmmakers such as Francis Ford Coppola.

And even though I’m functioning and can pass in daily life, I also think that people with more obvious M.I.’s should be treated with dignity just as well. Even if someone is having a conversation with you about being the Son of God and they’re blinking constantly doesn’t give you the right to laugh and make fun of them. Nor does it give you the right to permanently institutionalize them because they make others uncomfortable.

When I was first getting diagnosed my state of mind was explained as “excessive happiness” and that my being too happy “made other people uncomfortable.” Having my disability be explained in terms of it’s effect on others was probably why I bucked my diagnosis so much. Had I been told about what the symptoms of mania are and what was going on with my body and how bipolar disorder works, I probably would have had an easier time and I probably wouldn’t have tongued my meds so much. The fact was, however, that my own medical crisis was dramatically extrapolated into the way it was affecting the people around me and how that was my fault. The feelings others were having were worth more than the feelings I was having. I was making people uncomfortable. I was being a huge burden in terms of time people had to invest during my hospitalization. Having a legal aid lawyer to advocate for me so I could get into an english speaking hospital at the very least was considered an insignificant and ridiculous proposition, and a waste of $250.

And then there’s that creepy thing that happens when I out myself to temporarily able people. It’s as if a great relief washes over them because now I’m not a human, and now they assume I am intellectually diminished, and now whatever I have to say can be downplayed as me being “crazy.” It’s called being Othered, and it happens to people with disabilities all the time. There but for the Grace of God go I, how many times have we heard people say this?

Kay Redfield Jameson, a psychiatrist with bipolar disorder herself, has been asked if given the chance she would live without bipolar. I’m paraphrasing, but she said it best. “I would not be able to feel as deeply, to love as passionately.” She goes on to say that the accomplishments of those with mental illnesses have altered and formed our world so much that there may even be a benefit to having something like bipolar disorder, and to get rid of it might be of detriment to the world at large.

Even something as noble as spirituality and religion has been formed by persons with M.I.’s. This doesn’t make these thoughts or concepts less valid, rather it suggests people with M.I.’s may truly be accessing spiritual truths through what is too often pathologized completely as bizarre and meaningless behaviour. I am reminded of what Art Speigleman (creator of Maus) once said about his own psych ward experience and mental health crisis. A friend advised him “I know we’re all the same person, but you’re not supposed to tell anyone.” It’s very much the same for me. When I looked like I was at my craziest, when people assumed my brain was just no longer there, I was on the most profound journey to spiritual awakening than I have ever had before or since. I still carry those truths with me even now.

And what do we know? Ashley might be having the most profound journey to an understanding of the universe than we could ever hope to comprehend. Not all knowledge can be transmitted in terms of language or art or books. Sometimes it really is as simple as seeing a Buddhist teacher demonstrate a zen understanding by turning a flower.

Not only that, but as the technology develops so does the ability for people to communicate who otherwise haven’t been able to. A friend of mine who worked a great deal with special needs people said the first thing and the most important to teach was a no command. And it is important. We can ask Sky was she needs or wants and she’ll shake her head until we get to the real thing she’s been after. We can ask her if she has to go to the bathroom and she can say no. I wonder if Ashley’s parents have taken the time to figure out a no signal for Ashley to use, and even more than that, how they could possibly convey what their intentions were so that she could say no or not. And just because she can’t say no, doesn’t mean it’s okay to go ahead.

Which is really what it comes down to. How can we get to a point where when a disabled person says no, that will be respected? Even my disability involves times when my utterance of No is disregarded. Making sure I’m cared for the way I want involves living wills and Ulysses Clauses, and even then the psychiatric system disregards these.

3 thoughts on “

  1. Great stuff, I mean your writing, not all the injustice and prejudice people are suffering.

    It looks like I’ve got another blog to add to my reader; how am I ever going to find time to tidy the house or raise my children, hmmm…

  2. Your opening sentence says a great deal – it seems to me that most decisions for PWD are made about us, not with us or by us- to protect AB’s sensibilities, interests, etc. I also think that people with disabilities are silenced – for example, due to inadequate care, I know of folks who go without meals and other necessities behind closed doors. Perhaps *that* information might offend some peoples’ sensibilities, but it’s time to face the real issues PWD have and address their needs. It’s only one example – we have a long way to go.

  3. I’ve read these posts related to Ashley via a link from Ballastexistenz – and they’re all so well-written and well-expressed (and I agree with all of them!). Thank you.

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