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.

Autism Awareness Month (Self-Advocacy Remix)

So, April is Autism Awareness Month. This is, unsurprisingly, a month dedicated to making neurotypical people (people who don't have autism or other brain disabilities) aware of autism. Like any other time when a lot of people are talking about autism, the opinions of actual autistic people often get ignored. So here are some things that I, as an autistic person, would like non-autistic people to be aware of during Autism Awareness Month.


1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.

If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.

2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.

3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.

4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.

5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.

The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…

6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.

7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.

For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.


I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.

Community: I don't think it means what you think it means

I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.

I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.

Guys, I think this is a problem.

For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."

But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.

I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.

If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.

It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.

Tragedy Time

[I wrote a slightly less polished version of this in German for class last week]


I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.

Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”

I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.

---

A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.

---

People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.

Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.

“You don’t seem disabled.” “I thought it was something else.”

Of course you did.

---

“What did you do over the summer?” another friend asks.

“Not much,” I say. “How about you?”

Disability and Division

One of the attitudes about autism that really bothers me is the idea that autistic people are divided into neat little groups that have nothing to do with each other. Functioning labels – “high-functioning” versus “low-functioning” – exist to separate autistic people into categories. Once these categories have been formed, it’s easy to start generalizing about differences between the groups. Some people might say that “high-functioning” autistics are valuable and “low-functioning” autistics are not. Others might say that “low-functioning” autistics are actually autistic and “high-functioning” autistics are really just normal people who want an excuse to be mean. There’s a lot of prejudice reflected in these categorizations, and no truth.

Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”

Answer: I think I have something in common with another autistic person because we are both autistic.

Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who “might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)

When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”

Those people. People like that, as opposed to people like me.

My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.

It didn’t work.

Earlier this week I was approved to start an ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.

Those people. People like that. People like me.