Picture by Landon Bryce of ThAutcast. Used with permission.
Identity language is an interesting and often tricky thing. It’s been on my list of things to write about since very near the start of this blog, but I never thought I had a sufficiently formed opinion to really be able to write about it.
An early instance of this coming up was in a forum I had been participating in on autism and Asperger’s. Someone started a thread saying that he strongly preferred person-first language. He wanted to be called a “person with aspergers” and he did not agree with or appreciate the current dominant trend in the autism community to go with identity-first language. I had not done a whole lot of thinking about it at that point and was really quite interested, so I asked a bunch of questions on the topic. Why is it important with this, but not with other things? Where is the line drawn? I don’t call myself a person with crafting, I call myself a crafter. Why is one ok and the other not?
Sadly, the discussion did not continue after that point. He apparently thought I was being nasty, was nasty back to me and there was no more talk. Since then the topic of how we refer to ourselves and just how surprisingly volatile a topic that can really be has been lurking around in the back of my head. I have read any number of blog posts on the subject and lurked in several different online discussions. I have noticed a few trends.
People on the autism spectrum usually, though not always, prefer identity first language – “autistic person” (aspie can also be used but I’ve noticed some pushback against that word in some circles. I have yet to figure out what’s wrong with it, though). However, other people (sometimes people on the spectrum but often allistic friends, family, or professionals) prefer person-first language – “person with autism.” It’s the justifications of these two choices that I find particularly interesting.
There was a thread on ThAutcast’s facebook page that had people talking about this, and there were a few really interesting posts on both sides of the debate.
People who are in favor of person-first language usually claim that it is more respectful to phrase things that way. That it places the emphasis on the person, rather than on the autism.
As a teacher and a mother of a son with autism I prefer person first language. My son has autism rather than my autistic son. He is not autism, it is just a part of who he is. He was a person before he was a disability.
I prefer “person with autism” by far! ANY individual has MANY unique qualities. But we own our qualities, they do not own us!
”Person with autism” puts the person first and the disability/condition last. Autistic person puts the condition first, as if its the most important part of the person.
There are some interesting assumptions in these quotes, aren’t there? They seem to be saying that if I say “autistic person” then I’m claiming that it’s the only quality a person has, or that the person IS autism in some weird, existential way. However, the bit I really find interesting is the claim that “autistic person” is implying that the autism is the most important part of a person.
The thing that strikes me about that is that the english language does not work that way. We use adjective-noun pairings, so the emphasis is actually on the second word, not the first. If I describe a color as being “bluish green” do you visualize something that is closer to green or closer to blue? What if I say “greenish blue”? In English, the first word is a descriptor or modifier of the second word, not the other way around.
And from a linguistics point of view, “person who happens to be experiencing life while living with a label of autism” or whatever the latest in person first is doesn’t sound like the emphasis is on the person. Linguistically, it puts the emphasis on autism, on what makes us different. It kinda even makes it sound like the speaker thinks “Autistic person” is an oxymoron.
So as far as I can tell “person with autism” does not, at all, put the emphasis on the person like people want to claim it does.
Instead, I think it is trying to separate the autism from the person. To treat autism as something that gets attached to a person. That we “have” it much the same way a person has a cold. That it is not an intrinsic part of ourselves, but something separate and apart. Autistic people, for the most part, seem to disagree with this assessment.
I am no more defined by my autism alone than by my hair color, and yet no-one ever questions it when people are refered [sic] to as, say, blonde. If autism wouldn’t be viewed as something less than, people wouldn’t find “person with autism” to be the more respectful term.
I am Autistic, just like I am biracial, just like I am an athlete, a dancer, a writer, an activist. It is an integral part of who I am.
I prefer aspie or autistic person. I cringe at ‘person with autism’, because it makes it sound like the autism is detachable from me. I consider autism just as inherent to my personality as my sense of humor or my IQ
There seems to be a culture slowly emerging among autistic people. It’s still shaky at this point, but increasingly one part of it is pride in being different, and considering autism an identity rather than something we’re “trapped behind.” As such, a rather large number of us strongly prefer identity-first language.
Now, one method I like to use to sort out if a particular way of using language is problematic or not is to replace key words with something else. Two of the above quotations did just that in comparing “autistic” to things like hair color, race, and other points of identity.
So, in terms of identity, I am female. I do not call myself a “person with femaleness.” For me to do so would be ridiculous. When I call myself a female person, I am not saying that my genitals entirely define me. Nor am I saying that it is a quality that “owns me” or that I am reducing my personhood in some way. I am simply describing one aspect of my personhood. I could say the same thing regarding many other forms of my identity, from my preferred androgynous gender identity to the fact that I view myself as a crafter.
On the other hand, what if I replaced “autism” with a different kind of word? Like, maybe “cancer.” One does not say “cancerous person,” unless you happen to have cancer and wish to do so personally (I have never encountered this, but people have many different ways of coping with terrible things, so it wouldn’t surprise me if someone, somewhere chose to do so). Cancer is a horrible disease that is indeed something separate and apart from someone’s intrinsic personhood.
An example of one person’s attitude towards cancer.
So I suppose the question is, is autism more like being female, a crafter, etc; or is it more like a disease such as cancer. From my point of view, those who insist on saying “person with autism” are implicitly saying that they view it more like the latter. Unfortunately, this is really quite offensive and hurtful to those of us who view autism as an identity. In my mind, “getting rid” of my aspergers would basically be getting rid of me. I don’t view myself as some sort of horrible cancer, and I don’t like the idea that other people do.
I think Jess put it well in a comment on this post: “When cancer is excised, we know exactly what’s left behind. Autism is very, very different. It is an entire way of existing. Of seeing and feeling and experiencing the world. It’s a different perspective, a different focus, a different system.”
Now, all of that isn’t even the worst of it. The real problems happen when we try to voice this, and lay claim to our right to identify how we choose.
There are some excellent examples of this over on Autistic Hoya. One in particular happened when she was communicating with an advocate for people and families of people with brain injuries. This person actually directly told Lydia (Autistic Hoya) that she was wrong to use the term “autistic person” and that it is more respectful to say “person with autism.” This person told an autistic person that the way they identify is incorrect, refused to respect both her choice and the general autistic culture, and insisted on using a form that most of us do not prefer. I find this absolutely appalling. You can read Lydia’s response to this letter as well in the link above. Even sadder is when she mentioned in the comments “the person who wrote this letter responded, if you can believe it, with an even more arrogant and condescending email.” I do not have the details on this one, but the very fact that it happened is astonishing to me. Or at least, it should be astonishing.
Sadly, I find this to be yet another example of how autistic people are consistently pushed out of our own advocacy. It should go without saying that we should respect an individual’s right to self-identify. There are people on the spectrum out there who prefer to identify as “people with autism/aspergers” and their choice should be respected. Similarly, the choice to identify as “autistic person” should also be respected, and we should not have to deal with being “corrected” by allistic people, or have our preferences ignored in the name of “respect.” (For the record, it is not respectful to deny a person the right to self-identify. It is, in fact, quite disrespectful.) Then again, it should also go without saying that autistic people should be included in our own advocacy, and our voices should be heard. Yet all too often, we are not included, and our voices are not heard.