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WHERE DID ALL THE OLDER DISABLED PEOPLE GO?
The summer after seventh grade, I went to camp for kids with disabilities for the first time, which meant that I got to be around other disabled kids like me for the first time. I saw kids with other disabilities, and we all got to hang out together and things were naturally adapted for us so that nobody felt left out.
But...all of our counselors (18-24 on average) were nondisabled - or if they were - us campers never knew about it. That meant the only person older than me (with any disability) was a fellow camper, who was just three years older than me.
Older people with disabilities simply did not appear to exist. They were, at most, a few years older than myself. They were not in helping roles.
***
On television, kids with disabilities, chronic illnesses, etc, were plot devices to further a nondisabled character's story. They rarely had a speaking part. If they did, they almost certainly died by the end. Not to mention that they were nearly exclusively portrayed by nondisabled actors.
Offhand, I can remember Fred Savage playing Mike Mills, a disabled teenager who was moved into a care home when his family could no longer take care of him. Anna Chlumsky as a teenage girl dying of cancer. Lukas Haas played Ryan White who died of AIDS. Not to mention my most favorite miniseries as a child and a teenager was Switched at Birth, where chronically ill child Arlena Twigg - who dies midway through the movie - was played by Erika Flores.
In 1997, I saw a single representation of authentic CP. Marisa Velez played a (from what I recall) nonverbal girl with CP who was paired with an older troubled youth the angels were trying to rehabilitate. As I recall, Marisa's character, Kelly had no lines. She also went uncredited when the episode aired.
This was the world I was growing up in in the mid to late 90's.
Most of the stories I wrote still did not feature disabled characters.
Slowly, after attending that camp a second year in a row, I began incorporating disabled characters into my writing...but not in a good way. The majority of my writing from this period in time was full of toxic tropes about disability.
I was still living around intense levels of ableism daily, at home, school and even absorbing it from the media. I internalized the ableism I was surrounded by, and those damaging attitudes and beliefs came through in the disabled characters in my teenage years.
Shealynn:
Shealynn was the first chronically ill / disabled character I can find evidence of having written in my teen years. I was fourteen, and four-year-old Shealynn was nothing more than a plot device, honestly. She had cancer and died by the end of the story, feeling happy that she got to celebrate Christmas "with everybody in Heaven!"
In all honesty, though, this one was written as my mom was pregnant with my youngest brother. I was terrified of losing him. Of something going drastically wrong during his birth.
The only way I knew how to exorcise this fear was to write about it.
Aspen:
A month or so later, I wrote a hideous short story about a supremely unlikable nondisabled main character, whose family fosters a fourteen-year-old with Muscular Dystrophy named Aspen. Aspen is put in a room close to the bio daughter so she can "help" Aspen and of course the bio daughter resents this.
Bio daughter's best friend becomes attracted to Aspen - or rather - "to her chair and her disease" - and this has nondisabled MC hating her even more.
There's a moment where Aspen wakes from a nightmare and only the MC is there to listen. Aspen shares about her home life - full of loss and tragedy - for which she blames herself. "I feel like I drove him to it," she says of her father's death, post driving drunk.
By the end of the story, Aspen is at death's door and the MC is contemplating if it was for better or worse if they'd met at all. She decides it was for the better.
But holy cow, how gross. I'm sorry I wrote this one, guys.
Alex:
The last story I wrote as a fourteen year old was about a teenager named Alex who was paralyzed in a car accident as a little boy. It's...really bad. Alex's mom is super infantilizing. His best friend's mom is super terrifying. In fact, in the end, Alex's best friend ends up defending Alex from being attacked by his mom...and going to jail.
There's nothing redeeming in this one, guys.
Fourteen-year-old me even dropped the R-word in it.
I'll just be over here continually apologizing.
Rebekah:
By the time I was sixteen, I took my one and only creative writing class as a sophomore in high school. We had various writing assignments and in one, I told the story of Rebekah, who (wow!) actually had Cerebral Palsy.
I had forgotten all about her.
It's a short piece, where Rebekah ends up confronting her dad about holding onto his unfulfilled dream for his firstborn - that she'd be a gymnast. (Now, I wonder if this wasn't my way of processing the reality that my childhood dream of being a gymnast would not happen...)
Rebekah challenges her dad to pay attention to her dreams, and realize that she's been prepping for the Special Olympics at her school. Her dad realizes the error of his ways and lets go of his dream for her, vowing to support Rebekah in her own.
Ashlie:
In the same creative writing class, I wrote a short story about a girl named Ashlie, who was in a car accident and becomes paralyzed. Her reaction is likely realistic for a previously nondisabled character faced with a life-changing injury, but she definitely says the words: "I'd rather die than live the rest of my life like this! You can't say that everything is all right or that you know how it is because it didn't happen to you! You don't know! I don't want to live like this!"
Later, she says more cringeworthy things like, "The crash didn't make me illiterate. I don't have brain damage. I can read."
Ashlie's best friend (the nondisabled main character) leaves the hospital at the end of the story feeling confused and let down because "The hospital is supposed to be where suffering ends. How ironic it seemed that hers wasn't cured, but instead felt stronger than ever."
So, we had a brief glimmer of hope in the early teenage years, but just like that it's back to super-problematic. Yikes.
Liam:
Thankfully, by nineteen, things were slightly better. I had worked on a trilogy of stories since the previous year. In the second, I introduced Liam, a character I had based off of a friend I had gotten to know briefly, who died of HIV/AIDS-related complications in early 2000. (This was around the same time I started going to church as an adult, so my writing reflected this culture.)
For the first time, I really delved into a disabled character. Having gotten to know my friend so well, and him having shared with me his deepest thoughts around living with a chronic / terminal illness, this led me to take steps (thank goodness) to humanize Liam.
An excerpt reads: Liam remained in "his" spot at the very front. She had begun to see that many of Liam's actions in worship had hidden motives. He dropped to his knees when he couldn't stand any longer. He shut his eyes when he was being stared at. But when Liam sang, Julia knew he went all out for one reason and that was God.
Liam's actions in this excerpt mirrored my own when I was in church. Because of that, I feel there's the first glimmer of authenticity and depth via Liam's character that the previous ones lack up to this point.
Unfortunately, to the toxic belief in my particular church at the time, the third story in the trilogy ends not only with Liam dying, but with him and all his friends believing that to die was his destiny (because in this church death was freedom from chronic illness, terminal illness or disability.)
Despite all of the intensely problematic tropes in my writing, it remained a coping mechanism for me. Writing through Liam's death helped me cope with the very real death of my friend, from the same illness. So, while I'm not necessarily proud of any writing I did as a teenager as it relates to disability, I am glad I had writing as an outlet, to process what was going on in my everyday life.
Tune in next week, when we explore writing disabled characters in my 20s - also known as - the decade I discovered National Novel Writing Month.
Offhand, I can remember Fred Savage playing Mike Mills, a disabled teenager who was moved into a care home when his family could no longer take care of him. Anna Chlumsky as a teenage girl dying of cancer. Lukas Haas played Ryan White who died of AIDS. Not to mention my most favorite miniseries as a child and a teenager was Switched at Birth, where chronically ill child Arlena Twigg - who dies midway through the movie - was played by Erika Flores.
In 1997, I saw a single representation of authentic CP. Marisa Velez played a (from what I recall) nonverbal girl with CP who was paired with an older troubled youth the angels were trying to rehabilitate. As I recall, Marisa's character, Kelly had no lines. She also went uncredited when the episode aired.
This was the world I was growing up in in the mid to late 90's.
Most of the stories I wrote still did not feature disabled characters.
Slowly, after attending that camp a second year in a row, I began incorporating disabled characters into my writing...but not in a good way. The majority of my writing from this period in time was full of toxic tropes about disability.
I was still living around intense levels of ableism daily, at home, school and even absorbing it from the media. I internalized the ableism I was surrounded by, and those damaging attitudes and beliefs came through in the disabled characters in my teenage years.
 |
| [Image: Me as a 9th grader. I was super excited about my new short haircut and jean vest] |
Shealynn:
Shealynn was the first chronically ill / disabled character I can find evidence of having written in my teen years. I was fourteen, and four-year-old Shealynn was nothing more than a plot device, honestly. She had cancer and died by the end of the story, feeling happy that she got to celebrate Christmas "with everybody in Heaven!"
In all honesty, though, this one was written as my mom was pregnant with my youngest brother. I was terrified of losing him. Of something going drastically wrong during his birth.
The only way I knew how to exorcise this fear was to write about it.
Aspen:
A month or so later, I wrote a hideous short story about a supremely unlikable nondisabled main character, whose family fosters a fourteen-year-old with Muscular Dystrophy named Aspen. Aspen is put in a room close to the bio daughter so she can "help" Aspen and of course the bio daughter resents this.
Bio daughter's best friend becomes attracted to Aspen - or rather - "to her chair and her disease" - and this has nondisabled MC hating her even more.
There's a moment where Aspen wakes from a nightmare and only the MC is there to listen. Aspen shares about her home life - full of loss and tragedy - for which she blames herself. "I feel like I drove him to it," she says of her father's death, post driving drunk.
By the end of the story, Aspen is at death's door and the MC is contemplating if it was for better or worse if they'd met at all. She decides it was for the better.
But holy cow, how gross. I'm sorry I wrote this one, guys.
Alex:
The last story I wrote as a fourteen year old was about a teenager named Alex who was paralyzed in a car accident as a little boy. It's...really bad. Alex's mom is super infantilizing. His best friend's mom is super terrifying. In fact, in the end, Alex's best friend ends up defending Alex from being attacked by his mom...and going to jail.
There's nothing redeeming in this one, guys.
Fourteen-year-old me even dropped the R-word in it.
I'll just be over here continually apologizing.
Rebekah:
By the time I was sixteen, I took my one and only creative writing class as a sophomore in high school. We had various writing assignments and in one, I told the story of Rebekah, who (wow!) actually had Cerebral Palsy.
I had forgotten all about her.
It's a short piece, where Rebekah ends up confronting her dad about holding onto his unfulfilled dream for his firstborn - that she'd be a gymnast. (Now, I wonder if this wasn't my way of processing the reality that my childhood dream of being a gymnast would not happen...)
Rebekah challenges her dad to pay attention to her dreams, and realize that she's been prepping for the Special Olympics at her school. Her dad realizes the error of his ways and lets go of his dream for her, vowing to support Rebekah in her own.
Ashlie:
In the same creative writing class, I wrote a short story about a girl named Ashlie, who was in a car accident and becomes paralyzed. Her reaction is likely realistic for a previously nondisabled character faced with a life-changing injury, but she definitely says the words: "I'd rather die than live the rest of my life like this! You can't say that everything is all right or that you know how it is because it didn't happen to you! You don't know! I don't want to live like this!"
Later, she says more cringeworthy things like, "The crash didn't make me illiterate. I don't have brain damage. I can read."
Ashlie's best friend (the nondisabled main character) leaves the hospital at the end of the story feeling confused and let down because "The hospital is supposed to be where suffering ends. How ironic it seemed that hers wasn't cured, but instead felt stronger than ever."
So, we had a brief glimmer of hope in the early teenage years, but just like that it's back to super-problematic. Yikes.
Liam:
Thankfully, by nineteen, things were slightly better. I had worked on a trilogy of stories since the previous year. In the second, I introduced Liam, a character I had based off of a friend I had gotten to know briefly, who died of HIV/AIDS-related complications in early 2000. (This was around the same time I started going to church as an adult, so my writing reflected this culture.)
For the first time, I really delved into a disabled character. Having gotten to know my friend so well, and him having shared with me his deepest thoughts around living with a chronic / terminal illness, this led me to take steps (thank goodness) to humanize Liam.
An excerpt reads: Liam remained in "his" spot at the very front. She had begun to see that many of Liam's actions in worship had hidden motives. He dropped to his knees when he couldn't stand any longer. He shut his eyes when he was being stared at. But when Liam sang, Julia knew he went all out for one reason and that was God.
Liam's actions in this excerpt mirrored my own when I was in church. Because of that, I feel there's the first glimmer of authenticity and depth via Liam's character that the previous ones lack up to this point.
Unfortunately, to the toxic belief in my particular church at the time, the third story in the trilogy ends not only with Liam dying, but with him and all his friends believing that to die was his destiny (because in this church death was freedom from chronic illness, terminal illness or disability.)
Despite all of the intensely problematic tropes in my writing, it remained a coping mechanism for me. Writing through Liam's death helped me cope with the very real death of my friend, from the same illness. So, while I'm not necessarily proud of any writing I did as a teenager as it relates to disability, I am glad I had writing as an outlet, to process what was going on in my everyday life.
Tune in next week, when we explore writing disabled characters in my 20s - also known as - the decade I discovered National Novel Writing Month.
***
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