5 Step Guide on Writing a Character with X Disorder or X Disease



Rebloggable per request.

I’ve been thinking about this and came to the conclusion of like… fuck it, it’s time to write a 5 Step Guide on Writing a Character with X Disorder or X disease.

Step one. Create a character. Don’t look for a certain disorder then write the character. Have your character written first, and by that I mean everything that doesn’t have to do with the disorder/disease. Of course this or that disease will have an effect on your character’s personality but your character’s disease isn’t their personality. Don’t use a certain disorder just to add it to your character because you think it’s cool, people in real life have it, it’s a real issue. Respect it.

Step two. Research like a motherfucker. 

Step three. Be creative. Ask yourself how you’d be if you had it, know that you have a better image of what it is, causes, symptons, diagnosis and treatment. 

Step four. Don’t focus entirely on the disease, or the disorder, or the disability. Then it stops being about the character and starts being about what it shouldn’t be.

Step five. Yay you’ve done your research and have a character and this character happens to have this disease but they have a personality.

Step six (actually an extra from step two): find people with the disease (another good idea is to search for experiences from people with it) or that have knowledge in it and ask because it’s okay not to know and even better when you’re willing to learn.

Now go and write awesome characters.


I would add to this:

Never make the character’s experience of the condition exactly like the textbook says it is.


1. Nobody is exactly like the textbook. Ever. Even the people closest to the textbook aren’t exactly like it. Anyone who says they are is either mistaken, confusing themselves, or lying. (Lying isn’t necessarily a terrible thing to do in a world where often to get help you have to seem textbook. But it’s a thing to be aware of.)

2. Textbook-type descriptions are almost always written by people who don’t experience the condition. People who don’t experience the condition always get a lot of stuff wrong when it comes to what the actual experience is like. Often this is even true — sometimes especially true — of world-renowned experts in the field.

Example #1:

I once had a doctor tell me that most people with gastroparesis don’t experience nausea. We just supposedly experience our stomach feeling full and we stop eating. I have never encountered a person with gastroparesis, let alone severe gastroparesis like I have, who doesn’t feel nausea as one of their main complaints if not absolutely the main complaint. But that doctor succeeded in making me feel weird for throwing up during my gastric emptying study.

The reason the doctor believed this was that his understanding of GP was mechanical rather than experiential. He understood GP is caused by partial paralysis of the stomach leading to slow emptying leading to loss of appetite. He didn’t grasp that loss of appetite is usually actually nausea — even that we often feel very hungry yet too nauseated to eat at all. That’s something you can only get from the people who experience it.

Example #2:

Most people who read modern literature on the subject think autism is a condition caused mostly by a lack of social awareness.

While some autistic people will describe themselves that way (note that back when it was given psychoanslytic origins we often described ourselves that way too, self-description changes with the times), many autistic people describe our actual experiences as a complex combination of differences in sensory and perceptual processing, motor planning, and cognition. With social stuff on the periphery if it’s considered a major part of our experience at all.

Also note that while professionals say we lack empathy, many of us experience ourselves as having so much empathy as to be overloading.

That’s what happens when you mainly describe a condition on outside appearances and make up your own theories, then make up tests that will always prove your theories right, ignoring the extreme flaws in your tests. (I’m lookin at you, Simon Baron-Cohen.) Seriously, autism is a field where all you have to do to get published is sound vaguely convincing. That’s why it attracts so much bad science. For a lot of descriptions of bad science in autism go to the website of Morton Gernsbacher. It’s rampant.

Always see what people describe their own experiences as. And don’t stop at the biggest names, not those who automatically echo the experiences considered the most valid. Seek out people who describe their experiences in unique and unusual ways that all differ slightly, sometimes hugely, from each other. You will start to find a huge variety. From that variety you will begin to understand how things really work.


3. Don’t combine every possible experience or stereotype you have ever heard into one person. Each person’s experience is going to be different. They can’t all fit into one person. That’s the mistake made by the author of The Curious Incident of the Dog in the Nighttime. He combined every possible autistic experience and ended up making an unrealistic character because he didn’t understand how each experience fitted together. I’m not talking about combining traits of so called LFA and HFA, which does really happen. I am talking about cobbling together every surface trait he had ever heard of with no clue what lies under the surface or why they cannot fit together in the pattern he put them in.

4. That same author made another mistake. Which is really covered in some of the instructions anyway. He made his character basically a robot running on his autistic traits instead of any other thing. As in, if you program in any situation, you know exactly what he would do. That’s not how real disabled people work, autistic or not. We don’t run on programming caused by our condition. Even when, like autism, our condition touches every part of our being in one way or another. If you write a robot or automaton where you can predict their every move based on their condition, you’re not writing a real person. Just because a condition affects the brain doesn’t mean you can predict our every move or that we don’t have a personality.

I’d add to this also: 

1. Do not use disability as a loaded symbol. Don’t use a character’s disability to make them inspiring, or to insert tragedy into your story. Don’t use it as a way to make them bitter. Disability is a real lived experience, not a symbol. And it doesn’t mean the same thing to disabled folks as it does to folks without disabilities - at bottom, people have lives. So write the life.

2. Do not write people with disabilities as disembodied minds. People with disabilities live in bodies. Bodies are part of life. Folks without disabilities tend to be scared of noticing disabled bodies - be careful of that in your writing. If your character isn’t experiencing anything physical, or their physical experience isn’t substantially different from someone with a nondisabled body, you’re probably making that mistake.

3. On the other hand, don’t write voyeuristic accounts of people’s bodies either. You’re writing a person, not a zoo exhibit for people to stare at. For instance - the complications in meeting up with folks socially arising from most public places not having accessible bathrooms might be relevant to your story, but the details of how someone uses the bathroom probably aren’t. If you’re including that kind of thing, make sure you know why you think it’s relevant to your story.