Thursday, September 27, 2012
I think my best writing happens when I most don't want to write about a topic.
Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.
Today that subject would be use of the word disability.
Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.
But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.
I also see him as he defines himself -- as smart, funny and gentle.
I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.
In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.
We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.
That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.
But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.
I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.
I do not see an opening or shift in how people view the word disability when attributed to a person.
I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.
A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.
On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.
But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."
Who wants their human identity to be summed up as a negation of something?
My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.
In his head, was he thinking: "I have a negation of the ability to learn?"
No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?
And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?
It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.
Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.
And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.
Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.
It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.
Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.
"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"
"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."
It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.
I get that in order to acquire funding for the services our kids need, they must be categorized.
But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.