Just republishing this for future reference. First published in Literary Hub, August 23, 2016

Recently I have read several articles about disabled people written by non-disabled writers. The authors have clearly projected their own fears and prejudices onto the subject of their piece, and spoken for them from that place. If I could say one thing to those authors it would be this: Do not assume that empathy equals experience. You might think you know what it’s like for another person, but you don’t.

For example, if you think that using a wheelchair would make you feel trapped, isolated, broken, and shunned, you might assume a wheelchair user regards themselves as trapped, isolated, broken, and shunned and interpret what they do through that perspective. But they might not feel trapped. For some of us, a wheelchair represents freedom, the ability to get out and about autonomously; it is a device that makes more possible a life full of friends and work and opportunity—on our own terms.

In other words, one’s empathy can be unreliable. I offer these guidelines to help you find your way beyond it. They are general guidelines for non-disabled writers who may have occasion to write about a disabled person or people. They are (mostly) formulated to apply to all genres and categories of writer, for example, journalists, novelists, bloggers, critics, poets, essayists, academics, and dramatists.

I am not saying that if you are not disabled you may not write about disabled people. I’m a novelist; I won’t let anyone tell me what I may may not write about. I am saying that when writing about a person who identifies as belonging to a group you can never be a part of, tread carefully and thoughtfully. Also, bear in mind that no one can speak for a group unless they have been explicitly elected to do so. I don’t pretend to speak for all disabled writers; do not assume all disabled people feel and think the same on this subject. I’ve discussed this with others, of course[1], but in the end these guidelines represent one writer’s opinion—and just a beginning, at that. They are far from complete. Please add suggestions and comments below.

I’ve divided the guidelines into two parts, proscriptions and prescriptions. To some degree they mirror each other but you may find it easier to hear one set than another. Read them both. And then go read the Storify of the first #CripLit Twitter chat.

Never (First, Do No Harm)[2]

Never equate physical, psychological, or intellectual impairment with loss of personhood. People are people. Period.

Never speak for a disabled person unless you have explicit permission to do so—and then only use direct quotes.

Never assume you know what a disabled person thinks, feels, or wants. Empathy is not experience. There is no substitute for listening.

Never project your experience—your fear, discomfort, or unhappiness—onto us. Your experience is not ours. We might not be afraid, uncomfortable, or unhappy.

Never present your assumptions, projections, or guesses as fact.

Never use disability as “narrative prosthesis.” That is, don’t use a crip as a prop, or an impairment as a signifier of or metaphor for anything (especially evil, degeneracy, or corruption). Do not magically eliminate or fix the disabled person for narrative convenience. (For more on this see Disability Art, Scholarship, and Activism.)

Never assume that one disabled person acts, feels, thinks, or wants the same as another disabled person. We are as various as non-disabled people.

Never express astonishment when a disabled person performs what would for a non-disabled person be an ordinary, everyday act. It’s not polite to be too surprised.

Always (Nothing About Us Without Us)[3]

Always, before you publish, ask the opinion of readers with the disability you portray. Listen to what they say; believe their experience.

Always, if you are writing fiction (or lyric, or drama), be clear in your bio that you are not disabled; that you are writing from a center you imagine, not one you experience.

Always, if you are writing non-fiction, write from the perspective of a non-disabled person. Make sure you are clear that the piece is about you and yourfeelings/experience/opinion as a non-disabled person. A serious profile of, say, a disabled artist might be better being written by a disabled writer.[4]

Always, if you draw an analogy between some aspect of your experience as a non-disabled person and the experience of a disabled person, make it clear you are guessing. Bear in mind you could be mistaken.

Always, if you are told by a disabled person that what you’ve written is wrong—even if you don’t understand what the problem is, exactly; even if you meant well and feel hurt by the response—be prepared to accept their criticism. Be prepared to apologize. Learn from your mistake.

Always remember that disabled people are human beings with full lives; we are people, not medical or clinical conditions.

Always remember that words matter (see my post, “Lame is so gay.”) Be very careful with the words you choose and how you use them.[5]

[1] Many thanks to Alice Wong, Kate Macdonald, and Sean Mahoney. After I’d written this piece I read an article co-authored by Wong, “The Inspiration Porn Resolution,” which I recommend.
[2] There are those that argue that Primum non nocere is nonsense. (See, for example, the Harvard Health Blog.) I think it’s a reasonable way in to thinking about things—and it’s easy to remember.
[3] There are two books with that title, both written in 1998. Wikipedia will give you an overview.
[4] I’m aware that this is a provocative statement. But these guidelines are designed to help writers to think first and then proceed with care.
[5] This is particularly true of the word disabled itself. I prefer to call myself a crip; others loathe that term. I don’t much care for ‘people first’ language—I prefer disabled person to person with a disability. I actively dislike handicapped. In ten years I might feel and think differently about all of the above. If in doubt, ask. Just don’t expect the same answer from different people.