For the last few days I have had my good friend Stephen Kuusisto staying at my home. If you have not read Kuusisto's memoir Planet of the Blind and his blog under the same name you are missing great writing on disability. Steve is more than just a great writer. He is one of the few academics I have met that is not only exceptionally smart but hysterically funny. He also has a penchant for dropping F bombs multiple times a day. Thanks to him I have had the opportunity to hang out at Guiding Eyes for the Blind in Yorktown, New York. While he does his research toward his next book I have been working on a review essay regarding the divide between bioethics and disability studies scholars and disability activists. Writing this essay has been a struggle.
The Guiding Eyes for the Blind facility and the property it is situated on is spectacular. It is without question the most beautiful disability related institution I have ever been to. I have found being around Kuusisto and the staff I have met at the Guiding Eyes for the Blind energizing--far different from my usual solitary existence. It makes me yearn for a collegial academic environment. It has also boosted my ego, a dangerous thing for any male academic. Thankfully being disabled is the perfect cure for a big ego. Yesterday Kuusisto and I went out to a local deli to pick up lunch. Let me tell you a paralyzed guy using a wheelchair and a blind man with a seeing eye dog attracts attention. And yes this sounds like the start of a bad joke. At the deli I parked and Kuusisto got out first and we were chatting as I put my wheelchair back together. Kuusisto was leaning against a car when the owner showed up. The first words out of the female car owner was "I have a disability too. You are inspiring". I looked at Kuusisto and we instantly knew we were about to be verbally assaulted. This was a woman that was not aging well. She was on the north side of 40, had a severe blonde hair job designed to make her and others think she was still 20 something. The look was not working and there had been some hard miles put on her body and face. I suspect in her life time she had consumed too much alcohol and drugs. We obviously were public property and like many people far too willing to share her views despite the fact they were unwanted. We did not ask to be abused. We did not have a sign on our shirts stating abuse me. In the estimation of this woman, we were inspiring because we were out there in the world. We overcame our disability and the pain and misery we experienced. She of course knew what a mighty struggle this was. She told us she overcame her disability, bitterness and abject misery. She was not bitter. No sir. She conquered her disability.
I instantly knew her type. Any sort of engagement would be futile. I became mute. Kuusisto stated a few benign words to appease her. This was not a teaching moment. In her mind we were the archetype of disability, a belief etched in stone. It is experiences such as these that provide fodder for much laughter. This woman had no clue. We have joked a lot about this woman. She created a good story. But today I am not laughing. Today I am wondering when exactly will such ignorance disappear. When will people such as myself and Kuusisto, each of us highly educated authors, be treated with respect people without a disability enjoy. When will I cease to become public property. When will my life be ordinary. When can I be an anonymous middle aged white male. When will I not be subjected to baseless ignorance the woman in question was all too eager to share.
In regards to your question, I'd really like to be able to give some kind of accurate answer that would encompass a broad understanding of the psychology behind the issue, but doubt that I can.
ReplyDeleteWhile the road to Hell may be paved with good intentions, I am finding it more and more difficult to judge people for what I don't understand in their behavior.
You asked once if you are an extremist and my answer is, of course you are! Because you do not shy away from publicly grappling with issues difficult to understand and unpleasant to most. It makes people uncomfortable, just as the staring of at severely disabled children is such an issue for most parents.
But you are a functioning adult so you actually get less pity in a stare but probably more anger (that look).
People will always project their inadequacies and a disabled person is any easy target, 'just look at them, they're so helpless!'.
I just read an article about a children's rehabilitation hospital here in Israel and someone posited that the wheelchair doesn't maintain or perpetuate the disability but rather that it is a vehicle to help nullify the physical deficit. That sounds like a reasonable compromise to me as far as the two sides coming to an understanding, because remember, that understanding of your position does require compromise.
You should've told her you were gay too.
ReplyDeleteEric, As always you provide much to ponder. Staring does not bother me--I have become accustom to it. I get people are curious, kids especially. If a person confronts me, starts a conversation or asks a question that has some semblance of being constructive I am willing to engage them. But there are times when the person is knowingly or unknowingly being demeaning I will do my best not to engage them. When pushed I will defend myself and cut the offending person off at the knees with a sharp verbal retort. I do not like to do this but it is a necessary skill I have learned. I will not compromise when my civil rights are being called into question or violated. On that point I am not flexible or ever willing to compromise.
ReplyDeleteClaire, Oh, I wish I had thought of this. I could have introduced Kuusisto as my soul mate. The woman's head would have spun off!
I'm glad to see you resisted taking this woman's kneecaps out, I don't know that I could have resisted. This is why I stay home a lot.
ReplyDeleteOne thing I often wonder is how often disability inspiration happens in other countries? Or does it happen? Since in the States disabled people are often assumed to have no career or achievements, let alone a life and be out in public (gasp!). I spent a few months in Germany a few years back and I did not receive a lot of the you are such an inspiration for being a normal person BS. It was refreshing.
Some of my family is from Trinidad, where if you have any sort of visible disability or visibility to your disability, you're expected to stay at home. The ‘you are an inspiration for doing everyday things’ never even comes into play. It's more like why are you out in public subjecting us to that [disability].
As a multiracial person who looks "black" there is an added layer to my experience as "public property". Often I find my disability “whitens” my interactions with the public--that the black girl with the golden retriever with the crutches or wheelchair is no longer threatening! Unless I’m in any sort of discussion about inaccessibility and then I’m just the angry black girl.
I tend to evoke so much pity (primarily from white people, though, I live in the second whitest state and go to school in a not-so-diverse area), who also for whatever reason, tend to assume my family is white (some are) and that I’m adopted (I’m not), so they (my imagined family) have saved me and instilled this miraculous gift of going into public, like everyone else. Recently I was told I was lucky to be was “saved” from those [black] people, don’t have to live in the “ghetto” and now have overcome my disability, and that I’m such an inspiration, all while trying to happily eat a meal with a friend in a restaurant. What surprises me the most is the sheer number or interactions where people insert race into the conversation. After some experimenting, I’ve decided that the dog and my Tilite elicit these bizarre interactions where race is pulled into the narrative. Is this the perception that black people don’t own Golden Retrievers, or can’t afford nice wheelchairs? I don’t know. I’m black, jewish, disabled, and gay—my prediction for social change is rather dismal.