Friday, February 21, 2014

An Open Letter to the Artist

An Open Letter to the Artist
By Kathleen Downes

Make room in your mind
For my curled up arm
My thumbs tucked stubbornly
Between two fingers

Paint my crooked figure
Pulled just slightly left
Draw my knobby knees
Great bulges on gently used legs

Make space in your sketchbooks
Your magazines, your films
For ribs that jut like mine
And please, don’t cover my scars

Take note of the way their fading red
Swirls into my skin
Like the mark of a time-honored tribe
And find a story within them

Look for the spots
Where the sun sneaks in
Between my braces and my socks
And love them, like I do

See my long toes that curl
When I speak my mind
Like an artist’s muse
Capture my bony, sloping shoulders

Don’t hide the wheelchair that cradles my body
Let it challenge what you thought
You knew about beauty
And think again.

Don’t see me as a fractured work of art
But instead, as a wildflower
That bursts in bloom
When seen through a lens of love

Sunday, February 16, 2014

"Fearfully, Wonderfully Made": No, I Don't Need You To "Heal" Me

I truly cannot make up some of the things that happen to me when I am just trying to go to school. This past week, as I was on my way back from class, a young man about my age stopped me, saying, “Can I ask you a question?”
Hoping it would be about the location of the vending machine, the time, or the date, I said yes. The young man proceeded to ask, “Why are you in a wheelchair?” Let me be clear, people with disabilities have no obligation to discuss how or why they came to be in a wheelchair in a random public place. It's actually pretty bizarre that most of the general population still thinks it's a fair question to ask a stranger. In fact, it was very tempting to tell him that I was in a wheelchair because my aide put me there this morning. But hoping I could give him a little educational moment for Valentine's Day, I proceeded to explain that I was in a wheelchair because cerebral palsy had damaged the portions of my brain responsible for voluntary movement among other things. Thinking that this was a far better Valentine's Day gift then a heart-shaped pizza or a box of assorted chocolates, I began to roll away.
But there was more. The young man replied that he believed one of the things God did for people like me was heal them. The continued prevalence of this line of thought is one of the things related to my disability that I struggle with the most. It remains so acceptable to challenge the wholeness of others based on the concept that my life must have less value because I can't walk. I do not think the young man's intentions were bad; in fact, they were very good. What disturbs me so is how readily a complete stranger summarized the quality of my life based on the ableist assumption that I need to be fixed. What disturbs me is how many people would see no problem with his quick assessment of what it must be like to be me. I believe in God, and further, I believe that a disabled person is not an accident or an error of judgment, but just another interpretation of God’s image. But this story is not about God, to tell you how to think about God, or even to challenge you if you don't believe in any God at all.
This story is to warn other people not to see me or anyone like me as a broken thing. This story is to show you that pity, stereotypes, and assumptions are not harmless things that inconvenience one person. Pity, stereotypes, and assumptions, repeated and spread billions of times over build up, and slowly, insidiously, create a whole society that does not see worth of anyone with a disability. The belief that I must lead a sad, tragic life builds systems that keep some and not others in a place of power. It keeps characters that look like me off the TV and out of the movie theater. It makes little girls and little boys seeking just one doll that resembles them come back with nothing. And when little girls and little boys with disabilities become the adults they ought to, it makes them wonder why the world just can't fathom that they could be happy.
They could be happy, with or without the ability to walk, or put on their own shirt, or jump up in the air. Those things say very little about the meaning of the life. Few people reflect on their lives and remember all the times they could tie their own shoes or go to the bathroom on their own. But they will remember their family and friends, they will remember the laughs they had, and perhaps most of all how others made them feel. All people deserve to feel like they were made with purpose, love, and dignity… “fearfully, wonderfully” made. Whether or not a person believes that he or she was created by God, I refuse to believe that anyone is made by mistake. Regardless of one's willingness or not to be seen as “created in the image of God”, we were all created in the image of something beautiful.
“All” does not exclude people with disabilities. With that thought in mind, I told the person matter-of-factly that I did not need to be healed. If he was created in the image of God, then why wasn't I? He looked a little stunned, and asked to pray for me anyway, this time not for healing, but to help me show other people that they too are created in the image of God. I may not have changed how he perceives me or anyone else who looks like me, but in the very least I changed the contents of his prayer to one based on the understanding that I am “OK” the way I was made.
To that young man, wherever you are, remember me when you consider what it means to live a good life. Remember that I feel lucky to be here, and I spend very little time imagining a life in which I can walk. Go heal broken things, broken things like attitudes, and misconceptions, and prejudice. Go heal a society that has starved some of acceptance, and don't waste time trying to fix things that are not in need of repairs.