Identity First

As I mentioned in my last post, I have had a post about so-called “person-first” language percolating. This will likely not be my only post on the subject, but I at least want to begin formulating my thoughts on the matter — partly because I expect that this will come up as I begin my studies in human services, and I want to have at least some thoughts lined up.

Let’s start with some definitions. “Person-first” (or “people-first”) language is a formulation used in many branches of human services, education, etc., wherein the individual’s disability or condition is expressed second, after some noun describing the individual: person with autism, for example. A common alternative is called “identity-first” language, which uses an adjectival form of the disability/condition before the noun: autistic person, to continue the example.

The way it is usually presented, the argument for “person-first” language is that it emphasizes that the individual is, well, a person first, and then their condition or disability. It puts forth the notion that a particular attribute is not the person’s identity, but more of a secondary trait. People who insist on this formulation often say we should not let our disability/condition/etc “define us.”

But here’s the trouble: it’s not up to others to decide what defines us. Many of us do consider autism part of our identity, and not as something separate (or separable) from who we are. It pervades our entire way of thinking, communicating, and viewing the world. “Autistic” describes the type of person I am; autism is not some incidental trait I happen to have.

Let me expand on that a moment. My last post consisted of screen shots I took of Google auto-complete search suggestions for various examples of “person-first” language. I found similar suggestions offered by Yahoo’s search engine, as well. Essentially, I wanted to convey a sense of the sorts of things people use this type of phrasing for — in other words, what sorts of things are seen as something one “has” rather than something one “is.”

Looking at those examples, I generally do not consider autism to be in the same category as other things people “have.” Many of these things are temporary conditions: having a fever, for example, or having braces. Autism is not temporary; it is lifelong. Others are things that do not have easily-created adjectives: “children with hair loss” cannot easily be changed to “hair-loss-experiencing children,” or some such. Autism has a ready adjective: autistic. Still other examples are physical traits that could often go either way in terms of language: “people with green eyes” vs “green-eyed people.”

That last one I could make a case for; mixing up the language between “autistic people” and “people with autism” isn’t intrinsically negative in my mind. After all, some people on the spectrum do not consider autism a part of their identity, and prefer person-first language — that’s fine, too. I am entirely in favor of people using whatever language they prefer about themselves. What I do not appreciate is the insistence that only certain language be used about a group of people — and especially not by people who are not in that group themselves.

(I am also in favor of varying one’s language in the interest of euphony, which frankly is another peeve I have when it comes to insisting on person-first language all the time. It’s clunky.)

But here’s the thing: when it comes to eye color, most people don’t, ahem, bat an eye over one’s choice of phrasing. You could say “blue-eyed” or “with blue eyes” and frankly I don’t think most people would notice. People only insist on “person-first” language when the characteristic in question is something stigmatized, something that they think we should distance ourselves from. They say this phrasing helps remind others that we’re people first, because people will otherwise not think so.

A recent article in the Journal of Child Psychology and Psychiatry highlighted this fact, and suggested that the insistence on “person-first” language may serve to accentuate stigma. Where the prescription for person-first language was intended to apply to everyone, it is used more frequently for people with disabilities, and “…is most frequently used to refer to children with the most stigmatized disabilities.” Because of this, it actually highlights the stigma attached to certain conditions, and helps to perpetuate it.

I found this paragraph particularly telling:

“Furthermore, children with more stigmatized disabilities are more likely to be referred to with gifted person-first terms (e.g. gifted children with autism), whereas children with less stigmatized disabilities are more likely to be referred to with gifted identity-first terms (e.g. gifted blind children). For children with two disabilities, the more stigmatized disability is more likely to be referenced with person-first language (e.g. blind children with autism, 94%), whereas the less stigmatized disability is less likely to be referenced with person-first language (e.g. autistic children with blindness, 6%).”

As I said before, I have no quarrel with people who choose person-first language for themselves. I also have no problem with using a mix of language for the sake of variety (though I prefer “on the autism spectrum” as an occasional alternative to “autistic”). But I think the institutional insistence on using only “person-first” language with regards to autism is marginalizing — especially considering that it has been repeatedly demonstrated that there is a widespread preference for “identity-first” language among autistic people ourselves

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Too Many Voices

If you’re like me, you probably know how it feels to get overwhelmed when too many people are talking at once. Maybe it’s a relaxed group conversation, or an animated classroom discussion. Maybe you’re trying to have a conversation in a crowded restaurant. But whether or not the majority of voices are directed at you, just the sheer volume — both the volume of noise and the volume of words/thoughts/ideas — begins to overwhelm any single voice, any single unit of information being conveyed.

Sometimes the internet feels like that to me. Especially when it comes to social media, and particularly when it comes to Twitter: whether people are directing their words toward me or not, there are just too many voices for me to process.

And when that happens, I lose my own voice.

I lose my voice because I have to pull back. Otherwise I get lost in the forest of other people’s words, and that makes me lose track of what’s important in my life. Sometimes I really want to reach out, but I can’t figure out what to say. I don’t always want extensive interaction, or help solving a problem — I just want some connection. But then I pause, because I don’t want all the voices focused on me, even though I dread being ignored as well.

So all of this is to say that I have been pulled back lately. Right now I am starting to reconnect with Twitter after nearly a week off, but I am still not feeling ready to share very much. I am woefully behind on reading all of the wonderful blogs I follow, too, and the thought of trying to catch up is daunting. I will be visiting family this weekend, which has its own trials, and we’ll see how “peopled out” I feel after that.

I do want to say, though, that generally things have been going well. 🙂 In fact, that’s probably part of why I’ve needed to pull back from online interaction — there has been a lot going on, and my focus has been pulled into new projects and areas of study. But I’d like to find a balance that allows me to maintain the connections I’ve made in the online world while also not getting overwhelmed by the flood of voices.

Finding My Voice

Sometimes language eludes me.

It’s not usually the ability to speak that is a problem. I sometimes speak quite a lot. Writing is admittedly easier, and things like email are usually the best way to convey my thoughts and/or plans. But the ability to put together complex themes into a coherent whole — such as an essay, a story, or a blog post — seems to get blocked sometimes.

This has been happening more and more lately, and I find it distressing. I have self-published two novels and several short stories, and for a while there I intended to make writing at least a part-time career. But I have been finding it harder and harder both to start new projects and to maintain enough momentum to finish them.

Maybe it’s an executive function issue. I’m still learning how to identify those as they come up. Mostly I just end up feeling overwhelmed, and my head goes fuzzy instead of…whatever un-fuzzy thing it was supposed to be doing.

As a current case in point, there is this blog. I have always had difficulty keeping blogs going, despite many attempts. With this one, I promised myself I would impose no deadlines, no expectations on my own ability to produce words. But I did promise a follow-up to my last post, about telling my parents that I am Autistic, so this time it’s been weighing on me that it’s taking me so long to put something together.

The talk with my parents went remarkably well. I brought all my plans, my script and my articles…and then I didn’t use any of them. Instead I just launched into the topic shortly after arriving, and didn’t stop until I felt I had said enough to reach some initial level of understanding. They asked some questions, and made some observations that helped them put what I was saying into context, and while they seemed surprised at first I could sort of see it settling in.

That conversation was also meant to be a prelude to discussing the topic with my wider social networks of family and friends, primarily via Facebook. So after I got home, I spent the rest of the week crafting that initial announcement and choosing what information I wanted to share.

I posted it on Friday morning, then went for a walk. The rest of that day was nerve-wracking, as I waited for reactions and got very few. Even things I posted after that got very little reaction for a while, which is unusual. Chatting with other Autistic people on Twitter helped me keep things in perspective for a while, particularly with the suggestion that many people probably just didn’t know what to say, but I spent the better part of two days second-guessing everything I had said and generally feeling anxious about having said anything at all.

Then over the weekend I got a private message from a friend. This is someone I have known for a few years online but have never actually met, and we had had a private conversation a couple of weeks earlier about the autism spectrum and late diagnosis. She realized at that point that she was probably on the spectrum as well, and began pursuing more information. She was writing this time to thank me for my public post, and to tell me that that previous conversation had helped in ways she hadn’t foreseen at the time.

And that is exactly why I wanted to start talking about this. In the weeks since that initial post, however, I’ve been finding myself at a loss for what to say next. My family in particular has a tendency to just not talk about uncomfortable subjects, and I still don’t have much of a sense of how they feel about this whole revelation. In addition, I get very anxious about extended conversations on social media; I find a lot of people are more interested in exchanging sound bites rather than thoughtful comments. Conflict is always difficult for me, and I am even more reluctant to risk conflict centered on the matter of my still-new identity as Autistic, which feels increasingly important to me and is also frequently misunderstood.

So I am still wrestling with language as I consider how else to be my authentically Autistic self in various facets of my life. But for now, I have managed to pull together this blog post, and I will consider that a decent next step. 🙂