Confession: I’m part of the problem
After the write-up on current media having few depictions of disabled people, I had one of those uncomfortable moments of cognitive dissonance as I realized I don’t have any disabled characters in my fantasy or scifi work. I have a number of characters (main and secondary) who are disabled in my contemporary fiction.
While trying to figure out why I’ve done that, I could only draw a parallel to how I meditate. My understanding is other people imagine themselves siting and calm to relax. I always imagine myself walking, because the most joyful thing I can think of is to walk without pain, unaided. My real world is a series of coping skills and adjusted goals. It’s a constant balancing act of what I can do versus all the things I want to do. [1] In contrast, my imaginary world is all about doing what I want, when I want, without thinking about the physical toll. There is no cost to consider, no pain to avoid.
I believe that’s carried over into my storytelling. Because my disabilities cause me pain, I tend to view disabilities as a negative influence on life. From having friends with different disabilities and reading autobiographies like GIMP I know that the social model of disability is more prevalent in their lives. They have more problems with external forces- lack of reliable public transport, biases from other people, lack of accessible accommodations- than with their disabilities in their daily lives. Deaf culture is perhaps the most widely known group that does not necessarily seek a cure, just a wider awareness and accommodation of their different needs, such as captioning on movies and transcripts on the news.
In thinking about how I’m not seeing people with disabilities in the fiction I consume, I realized my bias toward fantasizing about being pain free, about getting closer to the ideal in my head may be an internalization of the idea that only people with “normal” bodies are worth talking about.
I do think my subconscious line between my “real world” stories being populated with people like me, and “pretend world” stories being where the technology or magic can heal most anything says more than I realized about how much I continue to resent being disabled, how much the lack of treatment or possible cure plays into my thinking. I erased myself, and people like me, from most of my worlds. I don’t believe I did it out of spite, but rather a hope that some day, there might be a treatment that makes my life easier.
The one disabled character I do remember starting in a fantasy setting, I put aside. This is in part because I tied her pain to the Big Bad, and she became a passive damsel in distress who needed rescuing. That’s putting a horrible spin on the disability. I could have (and may now) write that same protagonist/antagonist pairing where she’s lived with pain all her life, so the antag’s power doesn’t cripple her the way it does others. It’s not that it hurts less, it’s just that she’s spent years ignoring the pain to get things done, so she can still move when others are curled up in fetal balls. (I’m actually a little excited by this old plotline now.)
Additionally, my scifi world with a telepathic ability that syncs up to tech is a perfect setting for hereditary deafness to be almost unremarkable. Heck, it might even be an advantage not to be distracted by the sounds on a starship. I’m not sure; I’ll need to explore the idea. A simple change, to take what I know, what I’ve learned from friends, and slide it into a story where people have the tech to get implants or translators and choose not to, because they don’t need to.
This is also a world where gene manipulation is commonplace. Having someone with a service dog would be relatively easy, once I figure out how low gravity and a few other things would affect a dog’s effectiveness. I could have specially bred dogs live 40 years, be super-intelligent, and provide a sort of buddy comedy flavor to the story.
I don’t know that I’ll succeed in every story going forward, but I do hope that at least some part of my brain will stop asking “How could this worldmake people better eliminate people with disabilities?” and instead try to come up with alternate questions. “Where would people like me be in this society?” or “How would people have adapted this technology (or magic) to help them live independent lives?”
I’ll also admit I’ve been working on a children’s story with the service dog as the point of view character. This was in part because I didn’t want the kid’s disability to be the center of the story, in part because I was talking with my mother about the Hank the Cowdog series, but also because I was facing retiring my service dog. I wanted a way to capture his joy in his work, a way to make it fun to see the world from his eyes.
Maybe I’ll add some scenes from the kid’s point of view, just to see what I can do there. Maybe it’s fine as it is. My writers’ group feedback was mostly wonder at what a dog with a solid set of skills (take, tug, fetch) could get done. Maybe it’s enough to educate while entertaining.
I’ve got a lot of thinking to do. I hope it leads to an improvement in my fiction, and a wider representation of people like me in my own work.
[1] For anyone not aware, Spoon Theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ is one of the better illustrations of these limitations. I don’t have Lupus, but I do a similar sort of energy budgeting to get through daily life.
While trying to figure out why I’ve done that, I could only draw a parallel to how I meditate. My understanding is other people imagine themselves siting and calm to relax. I always imagine myself walking, because the most joyful thing I can think of is to walk without pain, unaided. My real world is a series of coping skills and adjusted goals. It’s a constant balancing act of what I can do versus all the things I want to do. [1] In contrast, my imaginary world is all about doing what I want, when I want, without thinking about the physical toll. There is no cost to consider, no pain to avoid.
I believe that’s carried over into my storytelling. Because my disabilities cause me pain, I tend to view disabilities as a negative influence on life. From having friends with different disabilities and reading autobiographies like GIMP I know that the social model of disability is more prevalent in their lives. They have more problems with external forces- lack of reliable public transport, biases from other people, lack of accessible accommodations- than with their disabilities in their daily lives. Deaf culture is perhaps the most widely known group that does not necessarily seek a cure, just a wider awareness and accommodation of their different needs, such as captioning on movies and transcripts on the news.
In thinking about how I’m not seeing people with disabilities in the fiction I consume, I realized my bias toward fantasizing about being pain free, about getting closer to the ideal in my head may be an internalization of the idea that only people with “normal” bodies are worth talking about.
I do think my subconscious line between my “real world” stories being populated with people like me, and “pretend world” stories being where the technology or magic can heal most anything says more than I realized about how much I continue to resent being disabled, how much the lack of treatment or possible cure plays into my thinking. I erased myself, and people like me, from most of my worlds. I don’t believe I did it out of spite, but rather a hope that some day, there might be a treatment that makes my life easier.
The one disabled character I do remember starting in a fantasy setting, I put aside. This is in part because I tied her pain to the Big Bad, and she became a passive damsel in distress who needed rescuing. That’s putting a horrible spin on the disability. I could have (and may now) write that same protagonist/antagonist pairing where she’s lived with pain all her life, so the antag’s power doesn’t cripple her the way it does others. It’s not that it hurts less, it’s just that she’s spent years ignoring the pain to get things done, so she can still move when others are curled up in fetal balls. (I’m actually a little excited by this old plotline now.)
Additionally, my scifi world with a telepathic ability that syncs up to tech is a perfect setting for hereditary deafness to be almost unremarkable. Heck, it might even be an advantage not to be distracted by the sounds on a starship. I’m not sure; I’ll need to explore the idea. A simple change, to take what I know, what I’ve learned from friends, and slide it into a story where people have the tech to get implants or translators and choose not to, because they don’t need to.
This is also a world where gene manipulation is commonplace. Having someone with a service dog would be relatively easy, once I figure out how low gravity and a few other things would affect a dog’s effectiveness. I could have specially bred dogs live 40 years, be super-intelligent, and provide a sort of buddy comedy flavor to the story.
I don’t know that I’ll succeed in every story going forward, but I do hope that at least some part of my brain will stop asking “How could this world
I’ll also admit I’ve been working on a children’s story with the service dog as the point of view character. This was in part because I didn’t want the kid’s disability to be the center of the story, in part because I was talking with my mother about the Hank the Cowdog series, but also because I was facing retiring my service dog. I wanted a way to capture his joy in his work, a way to make it fun to see the world from his eyes.
Maybe I’ll add some scenes from the kid’s point of view, just to see what I can do there. Maybe it’s fine as it is. My writers’ group feedback was mostly wonder at what a dog with a solid set of skills (take, tug, fetch) could get done. Maybe it’s enough to educate while entertaining.
I’ve got a lot of thinking to do. I hope it leads to an improvement in my fiction, and a wider representation of people like me in my own work.
[1] For anyone not aware, Spoon Theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ is one of the better illustrations of these limitations. I don’t have Lupus, but I do a similar sort of energy budgeting to get through daily life.