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.