Tuesday, March 25, 2014

CP Awareness Day and The Cure We Should Really Be Seeking

Today is National Cerebral Palsy Awareness Day. I am supposed to be wearing green to support my people, but ironically enough, I am wearing red. Despite wearing the wrong color today, I think my signature palsy hands are a good enough indicator that I am celebrating today, seeing as one of them is nearly always stuck in the air like some kind of celebratory flag. Today, your social media newsfeed will probably be exploding with encouragement to “wear green- and stand up for a cure!” or a similar message accompanied by a smiling child “fighting this ‘disease’”. Let me be clear about something. Today, I need a cure. I need a cure, but it’s not the one that you think. Cerebral palsy has been part of me for my whole life. It’s impossible to separate us, because so much of the person I am has been colored by my disability. I know that it will continue to shape me as I grow older. So, no, please don’t spend today crusading for a cure for my CP. Spend today crusading for research and information on a topic that is overlooked and underfunded… the eradication of pity.
Pity has made certain people second-class citizens. Pity has made beautiful children who look different think they are ugly. It has deceived a society into thinking that acceptance applies to some and not others. It has allowed those who do not know our truth to call our lives not worth living. Pity is completely curable, but it relies on a willingness to invest in its end. We must give people with disabilities meaningful work and education. We must teach society that access is a right and not a privilege. We must bring people with disabilities onto the big screen and into our books in ways that lift us up, not make us into curious objects designed to accompany the crescendo of a slow, maudlin song. If we did these things, cerebral palsy would not scare society so much, and so many people would realize that they were fighting the wrong battle. They would realize that the enemy on which they should focus their fury is not cerebral palsy, but instead the inequality and stigma automatically attached to those who have it.
Today, on March 25, 2014, I will hope for the same thing I hope for everyday. I will hope that one day, people will welcome a child with cerebral palsy with the same love and joy given to any new arrival. I will hope for schools, workplaces, shopping centers, parks, and hospitals that genuinely welcome us out of kinship rather than legal obligation. I will hope that the world will see me as someone with a good life, in spite of and because of the disability that literally and figuratively sculpted my brain twenty- one years ago.
Don’t get me wrong. I don’t enjoy having epic spasms or becoming a palsied ice sculpture at the first indicator of a breeze. If there are ways to mitigate the more painful physical aspects of CP, I will welcome them with arms open as wide as my range of motion will allow. But don’t think the desire to treat a few nuisance aspects of CP means that I wish to “get rid” of CP itself. That would require a restructured identity, and I am at peace with my identity as it is.
If I did not have CP, people have said over the years, I would still be the same person. However well-intentioned that thought is, it’s just not true. I would lose the way my hand pops up like a creeping relative in every photo. I would lose the way my legs kick out when I’m so happy to see a friend, and the tighter than tight way I wrap people in a hug. I would lose the joy of eating soup by straw to spare my clothes, and the near-guarantee that someone I know will be seated in the same section of a concert hall. These may seem like quirks to you, better off gone, but quirks are those things that make us who we are. If we lose our quirks, we lose ourselves, and that would be a devastating loss.
Today, I ask you to be brave. Seek a new cure. A cure for pity. It’s a cure that’s so easy to find if we work together. It’s a cure that doesn’t lie in the hands of the world’s most brilliant scientists. It doesn’t grow in a petri dish. It grows in homes, schools, churches, and playgrounds… in little acts of real, honest inclusion. It grows in each of us, and it has the potential to be the advancement of our generation. How amazing it would be to discover it… as scientists, as teachers, as moms, as dads, as brothers, as sisters, as nurses, as doctors, spouses, scholars, and friends… as people. Wear green today, and seek this cure with me. But you don’t have to stand for it, sitting is cool too.
 If you're not too busy celebrating with a game of Limpo or Startle the Tail Off The Donkey, check out www. curepity.org to see an amazing campaign that has started the fight.