I’m twenty-four. It’s been two years now since I got diagnosed with type one diabetes – the kind that you can’t get better from, the kind that still doesn’t have a clear source. It took me completely off-guard. I retreated to my bookshelves, the way I’m sure many of us do when the world just becomes too much to handle. That was when it really hit me, when I picked up book after book and read about heroes changing the world, and none of them had to prick their fingers five times a day or administer two types of insulin if they didn’t want to feel ill. They didn’t have to count carbs by necessity to stay healthy, or feel bitter when their friends ate chocolate cake without having to think about it. I would read, and for about a year or so after the diagnosis, I’d sit there and think Where am I in this story?
I can count on one hand the number of times I’ve seen someone who has a chronic disease or disability be the hero of a speculative fiction story. I don’t know if maybe I’m reading in the wrong places, or if there’s real underrepresentation going on, but the fact that I haven’t seen many when I’m actively looking at this point… Well, it makes me wonder why. We have the perfect venue as speculative fiction writers to tell stories about those who aren’t sick, per se, but by general health standards aren’t and never will be ‘normal.’ And I’m not talking about stories where individuals Triumph Over Adversity or learn to live happily despite their challenging lives. I mean stories where illness, paralysis, blindness, deafness, or any other one of the litany of problems a person can possess have ramifications within the story itself.
I think part of the reason people don’t write them is because they’re not sure how. They want to be sensitive, don’t want to get things ‘wrong,’ and as a result, stay inside their comfort zone where they know who they’re writing and how to go about doing it. Rather than try something different and risk screwing up, they leave the issue for someone else to handle. But then, how do you keep from getting things wrong?
The obvious place to start is research; depending on your character’s background, gender, etc, their experience is going to be different. Finding out about growing up in a family with deaf parents or the experiences of a paraplegic is no different than researching, say, what it was like living in the 1920s or isolationist Japan. What would you do in those cases? Read books about the period, essays or stories written during the time and in the place you want to know about, get your hands on diaries if you can manage it. With disabilities, however, you have a far more immediate resource – people.
There’s a multitude of message boards online for groups with any category of disability you can think to write about. It’s amazing how willing people are to talk to you when you say you’re a writer and trying to get your facts straight for a story. Chances are they’ll be happy to answer your questions, if you approach them with sensitivity and respect. Humanity loves stories. We love to hear them, we love to tell them, and when we end up in the company of someone who seems genuinely interested, we also love to talk about ourselves. It can be intimidating, approaching an unfamiliar and interactive resource when you’re not sure what to say, but if you’re honest about your nerves and curiosity, most folks will be welcoming and kind. A few conversations with unfamiliar people isn’t much of a price to pay if you really want to Get Things Right.
The most important thing to remember when you sit down to write is the fact that, when it comes right down to it, you’re writing about an individual. Not a category: a person who thinks, feels, and experiences the world the same way you do. Their background will inform the way they interpret the world. That’s what will make them different from you. For example, food – for me – is numbers and calculations. I look at my plate or a fast food menu, and subconsciously I’m already tallying up how much insulin I’ll need for a given meal. I’m not a math head. I kind of hate it sometimes. But the question for the author is this: How would my character feel about it?
The other thing to ask yourself is how the world feels about that character. Up until the 1970s, various cities around the US had what were called Ugly Laws. Laws, actual codified laws, stating that people with unsightly or disquieting disfigurement weren’t allowed to appear in public places for fear of disturbing the general populace. Chicago’s Ugly Law read as follows:
No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person is to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense.
The $50 fine, in 1970, would be equivalent to a fine of about $270 today. Other cities included incarceration as an option as well. Now, call me crazy, but I don’t think anyone who fell into the category of those persecuted by the Ugly Laws would be unaffected by that kind of mistreatment. How does the world you’re placing your character in look at people who have the kind of disability they do? How does it affect them? What risks does it place them under? Say, for example, you’re writing about a female amputee who lives in Chicago in the 60s. She’s poor; she can’t afford the fine for being seen and reported outside, but for some reason, she needs to leave her house. How is she going to act while on the street?
Finally, there’s the simple question of how your character interacts with the world on a physical level. If they have one arm, what kind of challenges do every day tasks present, and how do they adjust for those challenges? What coping strategies do they have? Always, always remember that writing someone who doesn’t have all the same abilities as you does not make their contact with the world lesser than yours. Just different. Not having all the same faculties as another person changes only how you deal with the difference; it doesn’t make your entire life about the difference. If you want to get a better, albeit imperfect, look at how some kind of disability affects the way you interact with the world, try living with that disability for a day or two. Try living your life with a blindfold or ear plugs, or only allow yourself the use of one arm. The point of that kind of exercise wouldn’t be to discover what a challenge it is living that way; it’s only to see what you notice while doing it that’s different from your version of normal. Now imagine that it is normal for you.
No, not everyone is going to be happy with the way you handle a given topic. But then, not everyone is going to like whatever it is you’re writing in the first place. You can’t please the whole world. Just do your best and leave the judging to your readers, and when they tell you you’re wrong, ask why. Learn. Never stop learning, never stop asking questions. The more questions you ask, the better you get at finding out which ones lead to the most useful answers – and the answers you find useful might not be the ones you’d think.
March 10, 2011 @ 2:41 pm
Very interesting topic! Definately food for thought…
March 11, 2011 @ 11:59 am
Wow. I had not thought about writing a character with a disability, but I guess that’s a big hole in worldbuilding, isn’t it? Because unless you give a specific reason why everyone in your world is exactly alike physically, how is it reasonable to assume they are?
But there is one author who comes to mind as someone who writes Speculative Fiction though. Andrew Clements has written two or three books where the main protagonist is blind. But the way it is written, her blindness is somewhat of an advantage. The story centers on invisible people, and since her eyes do not function like everyone else’s she trusts her other senses and is able to believe an invisible boy’s story…
Anyway, they are fantastic books whose titles I can’t remember. But they are definitely worth reading.
Thanks for the post, Julie!
March 11, 2011 @ 4:28 pm
I love the idea of using characters with limitations or disabilities, but better yet, it would be nice to have these characters without the focus being their disability or illness. If we ever hope to achieve equality, we need to put less focus on the “issue” and more on the person.
March 11, 2011 @ 5:02 pm
Julie, I started a mental list of disabled protags… and then realized that they were almost university visible disabilities, rather than invisible ones like diabetes or asthma, and that more than half of them were missing/burned hands.
There’s a hole in my genre, dear Liza, dear Liza….
I went to a panel at Wiscon last year that was wonderful– they mentioned that many disabilities are situational. Bujold’s quaddies are the best example I can think of right now. Put them on a planet, and they’re clumsy and alien. In space, though, they don’t need as many workarounds as legged humans… so it’s wild-type people who are disabled.
Still, not a lot of diabetes in fiction. I will give historically-set fantasy a mild pass, but not more than that.
March 19, 2011 @ 2:43 pm
Valerie – I completely agree. As I mention near the beginning, I don’t want to see stories about ‘triumphing over adversity’ – I want to see heroes who are heroes and happen to have medical conditions that set them apart from those who don’t have to think about their bodies every day, just as I’d like to see stories with heroes of alternative sexuality or gender without the focus being on those topics.
And thank you, Jenna! I’ll take a look at those.
That’s part of the problem, too, I think Cassie – historically speaking, diabetes didn’t even start to have research breakthroughs until the 1920s, and many other chronic illnesses are the same way. So it falls on the authors to think up viable, logical workarounds, and many… well, they just don’t. (I do forgive historical fantasy for that. Mostly.)
March 21, 2011 @ 10:56 pm
If you have magical healers, I think it would be interesting to have diabetes or any other chronic illness. It could be done so creepily– a woman collapses in the square, then wakes up. “Hi there,” says the healer. “I own you now.”
“You’re going to need to check in with me three to six times daily for the rest of your life, or the rest of your life will be very short. Here’s a booster.” The healer zaps her. “Now here’s what I want you to do….”
Lisa BaoI tri
April 9, 2011 @ 6:52 pm
A few years ago, I wrote a very strongly-worded blog review of Leslie What’s story, “Psoriasis.” The author ended up commenting, defending her intentions, and I retracted my tone somewhat; but my visceral reaction to the story was absolute disgust. It depicted a man who was repulsed by his wife because she had severe psoriasis. Said man was the protagonist and supposedly sympathetic. I took issue with both the portrayal of psoriasis as a bubonic-plague-type illness and of disability as being an emotionally valid reason to leave your spouse. (My bias is still showing, clearly, and I haven’t reread the story since. Perhaps What didn’t intend for her protagonist to be sympathetic.)
That said, in my own writing, I definitely shy away from chronic illnesses and disabilities for the classic “getting it wrong” reason. In one story, I tried to write about a character’s disability as simply present but not important; half of my critiquers didn’t pick up on the fact that she was disabled. It’s problematic many ways.
April 9, 2011 @ 6:52 pm
Um, I have no idea why my name got jumbled in the previous comment, which was mine.