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Dear Mr. Urban,
Let me preface everything that follows by saying that on the main, my life is fairly ordinary. I pay bills and watch too much TV and read too few books, and I keep my mind busy by writing silly stories no one reads. Most of the time, I like my life, and while I can't say I wouldn't change it, I can say that I wouldn't give it up. It's mine, for better or worse.
I have moderate spastic quadriplegic Cerebral Palsy. That means I move through the world with a set of wheels under my ass and possess all the grace of a drunken marmoset on an ice floe. I list and lean and flop, and I couldn't stand up if my life depended on it. Heaven knows I tried when I was younger, prodded on by desperate parents in denial and enterprising doctors with visions of miracles in their heads. But it simply wasn't meant to be, and never mind the surgeries and the therapies and the well-meant prayers. I can't say I've made peace with it; there are days I still rail and seethe and argue with God, but I've learned to live with it.
It also means there are days when I don't want to do this anymore, don't want to wake up and fight my body just to make it out of bed and to the bathroom. I don't want to be stared at or prayed over or used as an object lesson in How Much Worse It Could Be. I don't want to be ignored by cashiers and waiters and other people at the grocery store who pretend not to see me, or given dirty looks because I'm slow. I don't want to hear the ticket taker at the movies surreptitiously whispering to my partner that they admire him for taking me out in public. I don't want to be told I should be grateful for my blessings by people who merrily proceed to metaphorically piss in my face with their head-patting condescension, or that the hardships in my life don't matter because I was put here by God to punish my parents and make them better people. I don't want to eat dirt and be told not to mind the taste because it's the best the likes of me deserves.
On these days--and there are ever-increasing numbers of them as I grow older; it's easier to believe the best of people when you are sixteen and filled with the optimism of the future than it is when you are thirty-six and twenty years into the realization that the wheelchair is forever--it's so very tempting to give up, to simply get into bed one night and not get out again. If I quit, then this can be over. No more exhaustion or loneliness or shame, no more wasted energy or disappointment, no more hurt, no more living with the knowledge that I don't belong. I could just stop, and even if there were nothing at the end of the dark, it would be better than this.
So I want to thank you for John Kennex. I know it was a role that required personal sacrifice for you, but I'm glad you took it. I needed him. I know he wasn't a perfect analogue for my disability, but he was disabled, and he was there for the world to see, not as an object of pity or a walking educational tool for rubbernecking clods with more curiosity than tact or a karma totem for people who needed to feel better about themselves, but as a man just trying to get by. He was grumpy and angry and confused. He was everything I've ever felt about being disabled, about being so very different. He was also smart and driven and decent under all the curmudgeonly pissiness. He was real. He was human, allowed to be flawed in more ways than his missing leg, and I can't tell you how much it meant to see him there, living his fictional life on the screen. I will miss him, but I will be forever grateful for the brief time I had him. He helped me keep my head above water, helped me make the decision to keep putting my wobbly feet on the floor every morning and trying to see the good in the world.
I'd also like to thank you for Bones McCoy. I know DeForrest Kelley lived in his skin first, and I will always adore him, but your Bones reminds me of a dedicated orthopedic surgeon I had as a child who tried so very hard to make my limitations easier to bear, and who never forgot that I was a scared little girl in a very scary, painful situation. He went on to head a children's hospital, and I went on to high school and university, where I met my partner. He didn't "cure" me, but he made my life better, and whenever I see your Bones, I catch a glimpse of him.
So thank you. Thank you for wearing their skins for a while. Thank you for the long hours and the time away from your family. It would be melodramatic to claim you saved my life, but you've certainly made it better, brighter, and more bearable on the bad days, and there are no words to express my gratitude for that.
I hope to tell you this myself one day at a con. If our paths should cross, please be patient with my palsied hands and fumbling mouth. If they never do, then I wish you well and look forward to your future projects and hope that all the blessings you have unknowingly given to the world are returned tenfold.
Sincerely,
Shannon Lowe
P.S. That surfing video you posted to Youtube never fails to cheer me up.
Let me preface everything that follows by saying that on the main, my life is fairly ordinary. I pay bills and watch too much TV and read too few books, and I keep my mind busy by writing silly stories no one reads. Most of the time, I like my life, and while I can't say I wouldn't change it, I can say that I wouldn't give it up. It's mine, for better or worse.
I have moderate spastic quadriplegic Cerebral Palsy. That means I move through the world with a set of wheels under my ass and possess all the grace of a drunken marmoset on an ice floe. I list and lean and flop, and I couldn't stand up if my life depended on it. Heaven knows I tried when I was younger, prodded on by desperate parents in denial and enterprising doctors with visions of miracles in their heads. But it simply wasn't meant to be, and never mind the surgeries and the therapies and the well-meant prayers. I can't say I've made peace with it; there are days I still rail and seethe and argue with God, but I've learned to live with it.
It also means there are days when I don't want to do this anymore, don't want to wake up and fight my body just to make it out of bed and to the bathroom. I don't want to be stared at or prayed over or used as an object lesson in How Much Worse It Could Be. I don't want to be ignored by cashiers and waiters and other people at the grocery store who pretend not to see me, or given dirty looks because I'm slow. I don't want to hear the ticket taker at the movies surreptitiously whispering to my partner that they admire him for taking me out in public. I don't want to be told I should be grateful for my blessings by people who merrily proceed to metaphorically piss in my face with their head-patting condescension, or that the hardships in my life don't matter because I was put here by God to punish my parents and make them better people. I don't want to eat dirt and be told not to mind the taste because it's the best the likes of me deserves.
On these days--and there are ever-increasing numbers of them as I grow older; it's easier to believe the best of people when you are sixteen and filled with the optimism of the future than it is when you are thirty-six and twenty years into the realization that the wheelchair is forever--it's so very tempting to give up, to simply get into bed one night and not get out again. If I quit, then this can be over. No more exhaustion or loneliness or shame, no more wasted energy or disappointment, no more hurt, no more living with the knowledge that I don't belong. I could just stop, and even if there were nothing at the end of the dark, it would be better than this.
So I want to thank you for John Kennex. I know it was a role that required personal sacrifice for you, but I'm glad you took it. I needed him. I know he wasn't a perfect analogue for my disability, but he was disabled, and he was there for the world to see, not as an object of pity or a walking educational tool for rubbernecking clods with more curiosity than tact or a karma totem for people who needed to feel better about themselves, but as a man just trying to get by. He was grumpy and angry and confused. He was everything I've ever felt about being disabled, about being so very different. He was also smart and driven and decent under all the curmudgeonly pissiness. He was real. He was human, allowed to be flawed in more ways than his missing leg, and I can't tell you how much it meant to see him there, living his fictional life on the screen. I will miss him, but I will be forever grateful for the brief time I had him. He helped me keep my head above water, helped me make the decision to keep putting my wobbly feet on the floor every morning and trying to see the good in the world.
I'd also like to thank you for Bones McCoy. I know DeForrest Kelley lived in his skin first, and I will always adore him, but your Bones reminds me of a dedicated orthopedic surgeon I had as a child who tried so very hard to make my limitations easier to bear, and who never forgot that I was a scared little girl in a very scary, painful situation. He went on to head a children's hospital, and I went on to high school and university, where I met my partner. He didn't "cure" me, but he made my life better, and whenever I see your Bones, I catch a glimpse of him.
So thank you. Thank you for wearing their skins for a while. Thank you for the long hours and the time away from your family. It would be melodramatic to claim you saved my life, but you've certainly made it better, brighter, and more bearable on the bad days, and there are no words to express my gratitude for that.
I hope to tell you this myself one day at a con. If our paths should cross, please be patient with my palsied hands and fumbling mouth. If they never do, then I wish you well and look forward to your future projects and hope that all the blessings you have unknowingly given to the world are returned tenfold.
Sincerely,
Shannon Lowe
P.S. That surfing video you posted to Youtube never fails to cheer me up.
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