Sunday, August 5, 2012

Disability first: autism is not an accessory

For the record, my thoughts on person-first vs. identity-first language! This was originally published on the AAPD intern blog.

The phrase “person with a disability” seems like something that you’d find on packaging for action figures.

Which is to say that recently I verbalized a lot of things that I think about the debate regarding person-first language ("person with a disability," "person with autism") vs. identity-first language ("disabled person," "Autistic person"), and the attitudes that people often express when talking about this issue, and other disability-related discussions where those same attitudes crop up.

So basically, to me, “person with a disability” sounds like “Magneto action figure with detachable cape” – like the disability is an extra that comes with the person, but not really a part of that person. Lots of disabled folks and communities have valid reasons for wanting people to use person-first language – for example, people with intellectual disabilities often prefer to be referred to that way, and I respect that. However, when non-disabled people insist on only ever using person-first language, I often feel like it’s because they don’t want to play with the action figure until they’ve detached the disability, so to speak.

When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.

(As with my other traits, I refer to my disability with an adjective-noun construction which is common to the English language. I would also describe myself as a long-haired woman. So far no one has come forward to demand that I instead refer to myself as “an individual with long hair,” or accused me of “defining myself by my hair length.”)

I’m starting to think that when people say “defining yourself by your disability” they really mean “talking about yourself in a way that reflects the belief that your disability is not detachable.”

I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.” And I feel like this is actually sort of central to the difference between disabled identity-first proponents and non-disabled person-first proponents: they want the disability to be separable enough from us that we can hide it, pack it in a suitcase, and maybe, one day, be able to lose the suitcase forever with the help of a cure! Or, to use my earlier analogy, they want our disabilities to be like an action figure accessory that you can put on and take off, so that they can choose when to interact with and accommodate our disabilities.

So why do I use identity-first language to describe myself? Because I like my disability, but more importantly, because it is a part of me that can never be separated from my personhood. I don’t want to encourage anyone to think of my disability as detachable from who I am.


  1. Thank you for saying it so beautifully.

  2. Lately "but your autism doesn't define you" really annoys me.

    Because it just might. I'm not sure yet. I'm making up for a lot of lost time in figuring out how much it does and doesn't. Lots of people didn't tell me the truth about what I was and what I wasn't.

    So it might.

    1. Yes. How anyone thinks that having your entire brain and central nervous system differ significantly from the majority population is not a defining thing is beyond me. What it really means is, they aren't comfortable with someone who is different from them and need to pretend we're all the same.

  3. Really, really well said. Love the action figure and the luggage metaphors!

  4. My son is autistic. Sometimes, when i introduce him, I say that he is autistic, and sometimes I don't. It depends on the situation and who I am introducing him to. He is autistic. That's a fact. It's an integral part of him. When I describe my son to someone, it's usually, he's 13 and autistic.

  5. Hi! I love your blog. I just wanted to say that I shared a quote from this post on tumblr and it has been by far the most liked and reblogged thing I've every posted. This article (not to mention your witty and incisive writing) seems to resonate with a lot of people.

    Anyway, I don't normally comment on blogs, but I thought you might like to know. :)

  6. I like this. I wrote a paper last semester about this and wish I had read this sooner as it has some very valid points that I missed the first time round.

  7. A really good way to express it, I think. I currently work with a cross-disability organization, and they use "person-first" language (and encourage it, as disability etiquette). I can sort of understand it in general terms, people not wanting to be defined by the fact that they can't walk, or are missing a limb, or they're in constant pain.

    But at the same time, when it comes to something as basic as the hard-wiring of the brain... how can it help but define us, at least in part? It affects the way we interact with the world in profound ways, ways that even people with "physical" disabilities (put that way because the hard-wiring of the brain *is* physical, but is considered mental) don't necessarily understand. Those who are blind or deaf from birth most likely understand us the best, of people not on the spectrum, and I know that in at least some cases, their cultures tend to prefer "identity first" language as well.

    Back at the beginning of the month, when I first discovered the number of blogs by adult autistics, I sent an email around work that I titled "Another Perspective on Person-First Language". I think I'm going to add this post to the list I'm keeping of those commenting on the matter.

    Thank you.

    ;) tagAught (ASD, brunette, cat-lover)

  8. The first time I said, "I have autism," it just sounded so very odd to me that I stopped saying it and started saying "I am autistic." I have a friend who often says that she calls herself a woman, not a "person with femaleness," and that gay/lesbian people don't call themselves "people with homosexuality," so why should we call ourselves "people with autism"?

  9. "Because I like my disability, but more importantly, because it is a part of me that can never be separated from my personhood."

    thx for this post. been thinking about about this particular sentence at the end. i recieved a diagnosis at 30, and it was a painful thing to hear. i can't really explain it, but i struggled to come to terms with it. so i'm always curious about people who have a positive reaction, i try to learn something from it. and i'm particularly interested in reading about how language can shape perceptions. it's sort of like re-framing...the words do matter, can have a major impact on reality "feels" to us. so these kinds of posts always challenge me, force me to consider where i'm at in terms of labels, words, reactions. thx again.

    M (

  10. I really like this description. The reason I describe myself as a woman with chronic pain and mental illness is, I think, because although these experiences have been formative for me, a part of me likes to hope that these things are not intrinsic to who I am, and may even possibly go away some day. I think that's quite different from being autistic.

  11. Beautiful conversation!!!!! Lots to think about as a -- how to say this!!!!! - things that might or might not be involved: autism, adoption, attachment disorder, rheumatoid arthritis, ptsd, hot mom ;) , family...

  12. Well said! I have moderately severe ADHD, and I like what you said so much that I'm envious at not having a similar adjective I can apply to myself. "I'm really ADD" seems to be as brief as I can make it. I think Restless above has made the point succinctly for individual differences in label choices.