Writing a character with a disability
February 23, 2018 3:53 PM Subscribe
I've been working on a story where the protagonist is a person with a congenital disability. Help me make her life truthful and interesting.
The character in question is in her early to mid teens and has a connective-tissue disorder similar to but not exactly like Marfan Syndrome. At birth (in 1980) she had heart defects severe enough that doctors did not expect her to live. A specialist offered his services and corrected the issues via a series of surgeries. She never obtained full heart function and her doctors continue to worry that she will develop cardiomyopathy as she gets older. Like someone with Marfan she's very tall for her age, and because children are terrible she's been bullied for as long as she's been in school. This combined with an unhappy home life for much of her youth leaves her withdrawn and bookish. Her doctors encourage her to exercise, which she manages with low-impact activities like swimming and biking.
This is fairly outside my own life experience, so I'd appreciate advice from anyone willing to share their own experiences with connective tissue disorders, congenital heart defects, and/or adolescent cardiomyopathy. What would the scar look like for someone in her teens that had extensive (open heart) cardiac surgery as an infant? Am I making stupid mistakes in my assumptions about her life? Are there any other important aspects about life, like a drug regimen, that I ought to consider? Are there any minor annoyances associated with her condition that it would be interesting to include?
Why? I'm a mediocre white dude who wants to write stories in a world where there's more than enough media representation for mediocre white dudes. I feel people with disabilities are especially underrepresented, and find myself drawn especially to people who struggle with disabilities that aren't immediately visible. I also don't want to stick too close to a real-life disorder, I'm shooting for a depiction of the life a person with this sort of disability rather than the portrayal of a specific disorder.
The character in question is in her early to mid teens and has a connective-tissue disorder similar to but not exactly like Marfan Syndrome. At birth (in 1980) she had heart defects severe enough that doctors did not expect her to live. A specialist offered his services and corrected the issues via a series of surgeries. She never obtained full heart function and her doctors continue to worry that she will develop cardiomyopathy as she gets older. Like someone with Marfan she's very tall for her age, and because children are terrible she's been bullied for as long as she's been in school. This combined with an unhappy home life for much of her youth leaves her withdrawn and bookish. Her doctors encourage her to exercise, which she manages with low-impact activities like swimming and biking.
This is fairly outside my own life experience, so I'd appreciate advice from anyone willing to share their own experiences with connective tissue disorders, congenital heart defects, and/or adolescent cardiomyopathy. What would the scar look like for someone in her teens that had extensive (open heart) cardiac surgery as an infant? Am I making stupid mistakes in my assumptions about her life? Are there any other important aspects about life, like a drug regimen, that I ought to consider? Are there any minor annoyances associated with her condition that it would be interesting to include?
Why? I'm a mediocre white dude who wants to write stories in a world where there's more than enough media representation for mediocre white dudes. I feel people with disabilities are especially underrepresented, and find myself drawn especially to people who struggle with disabilities that aren't immediately visible. I also don't want to stick too close to a real-life disorder, I'm shooting for a depiction of the life a person with this sort of disability rather than the portrayal of a specific disorder.
I had a lot of surgeries as a kid (for something else). It's reasonable that she would have a phobia of doctors and possibly even PTSD. I'm 43 and operating rooms and MRIs send me into sheer panic mode.
I was also bullied for my appearance. Your character may internalize the insults and think she is broken, no one will ever love her, she shouldn't have been born, etc.
posted by AFABulous at 5:24 PM on February 23, 2018
I was also bullied for my appearance. Your character may internalize the insults and think she is broken, no one will ever love her, she shouldn't have been born, etc.
posted by AFABulous at 5:24 PM on February 23, 2018
You might find Lucy Grealy’s memoir, Autobiography of a Face, helpful. She had completely different health issues, cancer at the age of nine that required the removal of a third of her jaw, but some of the issues will be the same. She was bullied extensively because of her disfigurement, for instance. She also writes extensively about her relationship with her parents and how that was affected by her illness.
posted by FencingGal at 5:42 PM on February 23, 2018 [1 favorite]
posted by FencingGal at 5:42 PM on February 23, 2018 [1 favorite]
Try Writing the Other by Nisi Shawl & Cynthia Ward. I haven't read this yet, but I've only ever heard good things about it.
Aside from getting the facts right, do pay attention to the way disability is used in plot and characterization. The attitude of the narration towards disability is just as important as any of the facts, I think.
Don't commit The Cardinal Sins of Disability Representation:
1) Does your character "overcome" her disability in order to be happy? Is she miraculously healed or cured in some way at the story's end? If so, problem.
2) On the other hand, is your character unable to ever find true happiness (or love) because she's so disabled? Also a problem.
Disabled people may, at various points in their lives, think these things about themselves — because of internalized ableism — but if the narrative wholeheartedly agrees with that and reinforces it, it's an issue.
3) Does your character have a personality and a history outside of her disability?
If all of her personality traits, development, reactions, etc. can be traced back to her disability, then she's not a real person. Like everyone else out there, disabled people have mentors, family drama, childhood friends, favourite TV shows and books, etc. that make them who they are.
4) Does the disability metaphorically represent something else?
E.g. autism representing loneliness or depression, "beating" cancer representing the character's "willingness to fight for life." A disability is a specific constellation of symptoms and experiences that stands for itself; it may cause or influence other things in a person's life, but it should never stand in for them.
(That you're asking this question at all indicates you're a thoughtful person who'd try to avoid all of these things, but I wanted to get it out there on the internet, in words, for anyone else who may be reading.)
posted by fire, water, earth, air at 7:08 PM on February 23, 2018 [13 favorites]
Aside from getting the facts right, do pay attention to the way disability is used in plot and characterization. The attitude of the narration towards disability is just as important as any of the facts, I think.
Don't commit The Cardinal Sins of Disability Representation:
1) Does your character "overcome" her disability in order to be happy? Is she miraculously healed or cured in some way at the story's end? If so, problem.
2) On the other hand, is your character unable to ever find true happiness (or love) because she's so disabled? Also a problem.
Disabled people may, at various points in their lives, think these things about themselves — because of internalized ableism — but if the narrative wholeheartedly agrees with that and reinforces it, it's an issue.
3) Does your character have a personality and a history outside of her disability?
If all of her personality traits, development, reactions, etc. can be traced back to her disability, then she's not a real person. Like everyone else out there, disabled people have mentors, family drama, childhood friends, favourite TV shows and books, etc. that make them who they are.
4) Does the disability metaphorically represent something else?
E.g. autism representing loneliness or depression, "beating" cancer representing the character's "willingness to fight for life." A disability is a specific constellation of symptoms and experiences that stands for itself; it may cause or influence other things in a person's life, but it should never stand in for them.
(That you're asking this question at all indicates you're a thoughtful person who'd try to avoid all of these things, but I wanted to get it out there on the internet, in words, for anyone else who may be reading.)
posted by fire, water, earth, air at 7:08 PM on February 23, 2018 [13 favorites]
To add to FWEA’s list: Does the person with a disability exist to further the protagonist’s journey or to further the plot? If so, don’t.
posted by shalom at 9:30 PM on February 23, 2018 [2 favorites]
posted by shalom at 9:30 PM on February 23, 2018 [2 favorites]
One thing to consider - is the disorder genetic, like Marfan's Syndrome is? If so, that's going to open up a lot of different thoughts around fertility and having children, knowing that it might be passed on to them.
posted by spinifex23 at 11:09 PM on February 23, 2018
posted by spinifex23 at 11:09 PM on February 23, 2018
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