Note: this post is written stream of consciousness style, and was composed in Dragon NaturallySpeaking. There are probably going to be weird errors, and I ramble.
Today’s Stream of Consciousness Saturday prompt is “body.” The first thing I thought about was my arms. I have had a lot of problems with them over the last couple of years, stemming from some minor injuries the have been exacerbated by overuse because of my mobility problems and because I’m a clutz and keep falling/reinjuring them. It makes me conscious of the fragile balance in my life. I’m always doing a balancing act, whether I’m physically walking or not.
Then I thought about Redefining Disability, and the point I keep coming back to about how we need to quit presenting disability as either a tragedy or an inspiration. I felt a lot of pressure to walk better when I was growing up because I knew that’s what I was “supposed” to do, and I felt like the best way to get the approval of any adult in my life was to walk well, but I never felt that I was anyone’s inspiration. I never felt that I needed to be inspirational heroic, and I never felt like wanting to walk well or trying to walk well was this amazing evidence of heroic behavior, because I never heard my parents saying things like that.
When other people — even strangers — would comment on my “inspirational” qualities, my mother would just say “she works hard ” or “she does her best,” and leave it at that. Sometimes I wondered if I wasn’t doing well enough because I had friends with disabilities, and so many of their parents talked ALL THE TIME about how their kids were superheroically awesome and amazing every time they did anything. I figured out that, to my mother, cerebral palsy was not a big deal, so I could just do whatever I wanted to do, and I’m glad because I don’t know what I would have done with pressure to be inspirational. I wasn’t even sure what it meant to be inspirational, except that, somehow, people with disabilities were always shown on TV struggling and feeling sorry for themselves when they couldn’t do things they wanted to do. I never had that problem, because I assumed I could do things, and it didn’t matter if it took me longer or I had to do with a different way. My mom just expected the to figure it out. She assumed I could, not that I couldn’t or that the process of figuring it out would be an ordeal.
I get the inspiration thing from strangers now or acquaintances now, people who have no idea who I am. I smile, thank them, and walk away, but the truth is , it just reinforces my feeling that society puts people with disabilities in special classes instead of allowing us to simply be. Either I’m “less” than everyone else because I have a visible mobility problem, or I’m someone’s “hero” because I “always keep trying and have a smile on my face.”
No one “always” has a smile on their face. No one is “always” happy. There are plenty of days that I am a misery to be around, and I can be downright nasty if you piss me off. Just ask Hannah or Natacha. But that has very little to do with my disability, unless I’m frustrated by discrimination or ignorance. It would be unhealthy for me to “always” smile or be happy, so if I was doing that, I would probably need to be taken to a therapist. Everyone has times when they’re not happy or smiling. Perpetuating the stereotype of the “inspirational” person with a disability who “always smiles and is cheerful” does not help other people see me as an individual.
What you see is probably the face I put on for the public, because I don’t know you. Sometimes it might be because I love you, and I don’t want you to suffer when I’m vulnerable and in pain if there’s nothing you can do about it. Sometimes it’s about the fact that I don’t want to spend my time dwelling on what I can’t do what hurts. Most of the time, I just don’t think like that. I don’t spend my time comparing how my life is to how everyone else’s life is, and I don’t have this concept that my life is so hard and yours is so easy by comparison. That would be conceited, insensitive and self absorbed.
My life is just different, and maybe I have some needs that you don’t have, but my needs are not any more special or unique than anyone else’s. They just are. I don’t know any person whose life is not difficult, or anyone who does not have individual needs, but most people don’t get a congratulations because they happen to be in a good mood or because they choose to live their lives instead of rolling over and staying in bed or something. I know that comments like this are well-meaning, but there is a disturbing implication to them that says the societal default is still to perceive any person whose body functions in a way that falls outside of conventional norms as “tragic” and anyone who “overcomes” that tragedy is a heroic inspiration.
There are some people who have debilitating medical problems, or who have to spend a lot of time learning or relearning motor skills or how to do the activities they want to do. It is inspiring to see someone succeed at something when the odds are stacked against them or to see someone who keeps fighting a disease like cancer or AIDS that would be tragic if we didn’t try to cure them, and there are people who legitimately could be regarded as heroes for the kinds of pain and struggle that they go through every day, but conversely, the cure-centric mentality of our culture is suffocating to me as a person who wants to be accepted the way I am, have my choices respected, and not given special treatment. There’s a difference between leveling the playing field and putting someone in a special class. I am not heroic because I can do the dishes or pay my rent. I am not here to be an object lesson.
When I think of heroism, I think of people who choose to serve others and make conscious sacrifices in order to make the world a better, safer place. The first person who always comes to mind is Jesus. Second, I think of my great-grandfather who served in World War I, my grandfathers who fought in World War II and the Korean Conflict, my uncle who served in Beruit in the 1980s, and my cousin who is a Marine Reservist today. I think of my grandmothers who held down jobs to support their families while the husbands were at war. I think of the teachers who took my shit and tried to help me in high school when my world was falling apart, or people like Justin Dart, who spent his life fighting for recognition, integration, and empowerment for people with disabilities, or Temple Grandin who has worked as an activist for people with autism and animal rights, and whose work has had significant impact on humane treatment of livestock.
At this point in my life, I haven’t actually done anything heroic. I get up in the morning, I put my pants on, I work, I hang out with my friends, and it doesn’t really matter whether I do those things “just like everyone else” or not. I usually don’t do things “just like everyone else,” I do them my own way, but the fact is I can do them, and I want to live in a world where people assume I am capable and that the way I walk has nothing to do with my mood, my accomplishments, or my right to be shown respect.