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SOCS: I Am Not Your Inspiration

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.

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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.

English: Temple Grandin’s talk at TED 2010.

English: Temple Grandin’s talk at TED 2010. (Photo credit: Wikipedia)

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.

16 thoughts on “SOCS: I Am Not Your Inspiration

  1. I LOVED this post. I found myself nodding along as I read it, especially when you wrote that “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.” I have a knee issue which flares up now and then but I don’t want surgery for it, since it isn’t likely to do much good for what I have (if anything, it could make it worse) — and I feel like others at times find my choice odd even though I technically am OK most of the time (and when I’m not, I use a cane for a few days). I also loved your description of how “society puts people with disabilities in special classes instead of allowing us to simply be.” So true. Wonderful post and use of the SOCS prompt!

  2. So you don’t have a cape? You don’t dodge bullets or infuse the world with happiness and joy like the Care Bears? Sheesh.

    I loved what you wrote and I identified with pretty much everything. I remembered overhearing some people on the bus talking about a guy with Down’s Syndrome who was sitting up at the front of the bus. They said, “Must be nice to just be happy all the time…” I almost laughed out loud. It seemed so ridiculous and naive.

    People are weird creatures.

  3. I see what you mean about this being the opposing point of view to my post. :) I see my son going through some of the same struggles as you face – not wanting special treatment, and not wanting to be “fixed” being the most prominent. I get the fixing thing from his family (my side and his dad’s side) more than anywhere else.
    I do think that people see him as an inspiration more, not for what he endures as much as how people compare his situation to their own lives. Maybe it’s not fair to compare, but we humans find it hard not to.
    I’m sure as time goes on and he grows up he’ll see his differences as more pronounced than he now does. Abstract concepts are still beyond his scope, and perhaps they always will be. But my point is, I do see where you’re coming from, and your perspective is extremely valuable to me. I don’t see his differences as much as others do and I’m entirely like your mom. The moms who must tell the world what their kids are capable of as though it makes up for what they lack – the whole but look what he CAN do thing makes me kind of nauseous. He’s a person. You’re a person. I’m a person. I’m blind in one eye so I have to turn my head further when I drive to see my blind spot. So what? We’ve all got things to compensate for.
    Sorry for rambling in your comments. I just really want to say I appreciate your thoughts, your perspective, and your way of putting it out here for us to read.
    Thank you so much, Rose. :)

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  6. Rose, I think I love you! <3

    I find you inspirational because, every time I visit here, I come away with my heart full of warmth and my head full of ideas to ponder. That's always been a winning combination or me, and, until today, I had no idea you had cerebral palsy.

    What you say here resonates so strongly. Eleven years ago this month, my then-employer said something to me that changed my life.

    "Everybody's biggest problem is as big as everybody's biggest problem."

    She said that to me because our baby boy had just died. That was a huge problem for me; but, she elaborated, everybody else had a biggest problem, and, even if they seemed trivial to me, they were real and painful to their owners.

    It's been almost eleven years, and, from the outside, we look like a perfectly normal family – stable, with parents who love each other, and two thriving, bright, healthy, friendly children. And yet, there's a hole in the fabric of our lives exactly the size and shape of a twelve day old baby who never cried and lived most of his life in a coma. It can't be seen, but it's no less there.

    Sometimes, if people learn about it, they'll say things like, "That's so tragic." But it isn't as tragic to me – Elijah made an organ donation that improved another child's life. There's no tragedy in that. He changed the course of our lives for the better, and that's no tragedy either.

    I choose, like you, to seek happiness within myself. I'm not always happy, or peaceful, because I'm human, and sometimes- well, sometimes I feel other things. Sometimes I cry for that beautiful baby who left so soon, and it just isn't fair that he's gone.

    Being human means feeling all the things. The good, and the painful. The beautiful and the ugly.

    So very, very glad you shared this, and yourself. So happy I get to read things you write, and come away the richer. That is inspirational, no matter how you put your pants on! =)

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