I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.
Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.
From the article:
In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.
As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients
What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”
It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.
We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.
Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.
Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.
I’d like to present some links that could be useful further reading on these topics….
The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.
Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.
I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)
If you have links you think are relevant, don’t hesitate to email me: firstname.lastname@example.org Please note my schedule means I may not see your email for a few days.