I wrote IMPERFECTLY FINE, the novel that landed me my agent when I got tired of reading books about people with disabilities and thinking to myself “they’re doing it wrong.” Not because their intentions weren’t good or because they were offensive. But because, as a person who lives with a couple “invisible” disabilities and who has been advocating for teens with disabilities, I think my perspective of why we should be writing these characters might be different from a lot of other writers. So when Jolene asked me to contribute to this month’s “How-To” series, I jumped at the chance to talk about this. Here are just a few tips, the tip of the proverbial iceberg if you will, on how (and how not) to write about people with disabilities.
1. Don’t try to write about a disability. Write about a person. Everyone’s experience is unique. There are no two identical childhood cancer stories. If you try to tell a “cancer story” or an “amputee story” you’re discounting the actual person with an actual personality that defines them a lot better than what they look like.
2. Don’t “cure” your characters. My mom was/is a big Young and the Restless fan. Growing up and to this day, it’s never failed to amaze me how one of these characters will be seriously maimed or otherwise disabled and yet, once the writers get tired of that storyline, the character comes into a miraculous cure. It’s such a copout. And think about the message that sends to your readers who have this disability. You’re not good enough the way you are. You don’t deserve a realistic and happy ending. I may have ranted about this in a review or two in the past.
And probably the most important thing to remember here—not all of us want to be cured.
3. Don’t do your research on Wikipedia. Beyond the fact that I’m still in the “Wikipedia is not a source” camp (I have to be, I’m an educator,) the information you’ll find online about living with a disability is just that, information. If you’re going to write a book and put it out into the world and expect people to spend their hard-earned money on it, get off your couch and off your computer and go do some real research. Spend some time volunteering at a children’s hospital. Find a community group or support group for family members of people with the disability you’re writing about and find out how you can help. Spend some time getting to know people like your characters and, if they’re open to it, let them vet your story. You’ll be surprised how different their perspective is from yours.
4. Don’t use the word handicap, unless you want the character using it to sound like an ignoramus. There’s some debate over whether the term originated from disabled beggars holding their caps in their hands to beg for handouts on the street. That’s certainly what we were taught in my doctoral level disability advocacy course during grad school. Regardless of where it started, today the term “handicap” raises a lot of people’s hackles and doesn’t tell you anything about the person living with the disability. Learn the proper term terminology for the specific disability you’re writing about.
5. Don’t write another Dr. Xavier. There’s been a lot of talk recently about the white-washing of mainstream fiction, about the need for a more colorful palette of main characters on our shelves. This is especially true about characters with disabilities. Dr. Xavier’s already been written—the guy who, despite life-threatening damage to his central nervous system, has all sorts of medical innovations and technological assistance at his disposal. It’s obviously easier to live without a physical disability. (If it wasn’t, it wouldn’t be called a disability.) But it’s easier to be a rich, white guy with a physical disability than to add a physical, cognitive, or mental limitation to life in poverty or life in a marginalized social group.
6. Do use person-first language. As I mentioned above, you’re not writing about a disability. You’re writing about a person with a disability. There is a right way and a wrong way to do this and it varies based on the disability. For example, the word Deaf is often capitalized in situations other disabilities are not. There is a lot of information online about doing this the right way.
7. Do acknowledge your own ignorance. Whether you’re doing your initial research or giving a blog interview or having a signing, people will question and correct and argue with you about the decisions you make for your characters. There will always be someone who knows more than you or knows something different from you about a disability. Embrace that. Ask questions. And thank them for the information. Perception is reality, and their perception is different from yours. It’s really that simple.
8. Do use a strengths-based approach. It’s really easy to focus on how a disability impairs life. But what about the strengths? The Olympics are cool. The Paralympics? Are AMAZING. I cannot even imagine being physically strong enough to compete in a paratriathalon. It’s not the disability that makes a person interesting to me. It’s what they do with it. (Which is not the same thing as what they do in spite of it.) I promise that every disability has it strengths. Mine makes me a better writer and a better mother every day.
9. Do approach your characters like you would their differently abled peers. Don’t treat a character with kid gloves just because they’re different. One of the things I loved about CATCHING FIRE was that, even though Peeta had an artificial leg, Collins didn’t focus on that unless it specifically came into play (i.e. swimming away from the cornucopia.) She tortured him equally to the other characters, not going easy on him because he was missing a limb. Don’t pity your characters with disabilities.
10. Do understand that people with disabilities are not nearly as fascinated about their disabilities as those who live without them. One piece of feedback I frequently ignored while writing IMPERFECTLY FINE was “I think you should show more CF treatment/statistics.” My response to that was consistently this: Teens with CF don’t want to pleasure-read about a girl spending two hours doing her breathing treatments. That’s their everyday nonfiction. And the last thing they want is to read statistics about their mortality rates. So if your target audience includes people with the disability you’re writing about, keep them in mind when you’re deciding how much research to put into your novel itself.
Of course this post comes with a disclaimer. Just like the characters I suggest writing, I’m just one disability advocate. And just one person with disabilities. And these are just my opinions. What works for me won’t work for everyone. So take what works for you and toss the rest. Or better yet, bookmark it for later. You never know how doing real research might change your mind.