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


Sticking to Small Talk

It’s often remarked by autistic people that we don’t “do” small talk. We’d rather not talk at all, or talk endlessly about one of our interests — there is no middle ground. We’re all different, of course, so this isn’t an absolute, but it does resonate with me. But I’ve been thinking about one way in which I sometimes prefer small talk, because it’s more comfortable than self-disclosure.

I don’t necessarily mean disclosure of my autism; I just mean any kind of revelation of who I am and what is important to me. Small talk isn’t my strong suit — I’d much prefer a deep, intense conversation about one of my passions — but it’s safer to stay on blander, neutral ground.

And that’s because all too often my excitement or intensity about a subject has put people off. I’ve learned how not to totally monopolize the conversation, so it’s not that; it’s just that a lot of people seem to get “spooked” by too much enthusiasm. (Their definition of “too much,” that is.) Similarly, the specific thing I’m enthusiastic about has often led to rejection: it’s too nerdy, too arcane, too incomprehensible. I’ve learned to introduce those parts of myself slowly and deliberately, and only to people I expect to (read: want to) interact with again in the future.

So I get impatient with small talk in a social setting, but I also get nervous that someone will ask a deeper question and try to get to know me when I’m not ready for that. The specifics of the setting matter, too; I am very conscious of people around me who might overhear what I am saying and take things out of context. There’s also the question of whether we have enough time (and enough mutual interest) to really get into the subject and truly understand each other, because most of my interests, beliefs and opinions do not make good soundbites. They need some shared context, in many cases.

But mostly it’s about trust, and that takes time to build. In the meantime, I’m likely to stick to small talk until I figure out where we stand.

(Addendum: I should add that I do have some go-to subjects that function well as small talk with most people, but are also strong interests of mine. I can talk about my dogs all day, for example, as well as just about any aspect of nature. Luckily this includes the weather, which is a common topic most people bring up. 🙂 This makes it easier to handle these sorts of conversations while feeling out what else I could go into detail about.)

Authentic Autistic Cooking

I have never liked to cook. I did it a little back when I lived alone, and a little more when I was with my first husband; he didn’t really like to cook either, so we agreed to split the job. But my current husband loves to cook, and, well, I like to let him. 🙂

The only problem is, he works in the evenings three days a week, which means I need to fend for myself for dinner. Sometimes he makes me something in advance, other times I get take-out, and yet other times I eat leftovers or some frozen dinner type of thing. But none of that is ideal, and one consequence (besides me not eating as healthily as I wanted) is a feeling of dependency on my husband; when he isn’t home, I’m not sure what to do, which leads to increased stress. It took me a little while to pinpoint this, but when I did I knew something needed to change.

But cooking? I have never really enjoyed cooking.

For one thing, I like to have clear instructions when I am first learning something. Once I’m comfortable, I can start to wing it, but I don’t like to do that right away. The trouble is, when trying to follow a detailed recipe, I’d inevitably run into ingredients (or sometimes tools) that I didn’t have, so I’d have to adapt it. That involves evaluating what I do have, and making decisions. This quickly becomes overwhelming. Of course, I could always choose a recipe ahead of time and make sure I had everything I needed, but somehow that never seemed to happen. (Good old executive functioning…)

So I decided that if I was going to start cooking for myself on nights I was alone, what I needed was a) step-by-step instructions, and b) the knowledge that I had all the ingredients required. Enter meal subscription boxes.

There are a lot of those out there now; you may have heard of Blue Apron or Hello Fresh, but there are several others. After a bit of research I ended up choosing Sun Basket, because I liked their ethic of using organic and ethically/sustainably sourced ingredients. I also liked that I could choose which meals I received, so I wouldn’t be surprised by a main ingredient that I absolutely abhorred. I don’t have too many food issues, personally, but there are some things — eggplant, for example — whose texture I just can’t take.

So I just got my first box this week, and cooked my first meal last night. This…was a lot of work. With a few small exceptions, what they send you are raw ingredients, so that you are cooking entirely from scratch. That’s one of the things I liked about this plan, but it is quite a lot more than I am used to doing. Also, while the recipes do include timing instructions (while the X is baking, prepare the Y, etc.) at least this first time, things didn’t work out exactly to plan. So it was a bit of a scramble at times.

I also have some sensory issues around getting my hands sticky, or slimy, or in contact with raw meat. So I was frequently stopping to scrub my hands free of oil, lemon juice, and/or bits of food as I went. (That probably didn’t help with the timing bit.) On the other hand, I did enjoy the sensory experience of smelling everything as I chopped and cooked it, as well as the visual display of all the fresh ingredients on the cutting board.

And in the end…this was by far the best meal I have ever cooked to date. The mix of flavors was very nice, and there was plenty of food. Beyond that, I had a fantastic sense of accomplishment from making this meal, as well as a pleasant sort of fatigue that left me very relaxed after I ate it. I’m looking forward to trying a different dish tonight, and tomorrow my husband and I are going to make one together. It’s only been one night, but so far this seems like a great solution to my original problem of what to do for dinner on my own.

Impatient for Change

No, really. I am.

I have been itching to try new things, learn new skills, begin new ventures. But I’ve been trying to temper that with the knowledge that I am already about to do all of those things, because I am starting school in a month. I’ve still been spending time with online classes and beginning new projects, but I keep having to remind myself that my available time will be dramatically impacted by two college classes, and I have no idea how much.

Will coursework just replace the existing time I spend on self-directed reading and learning, or will it be more? Will I get frustrated not having all of the time I currently have for those self-directed projects, or will I find new areas of inspiration from doing my coursework? How will it feel taking classes that actually have deadlines and consequences, rather than free or inexpensive online courses that I can dip in and out of as I want? How will it feel to be studying social work/human services as an autistic person who really wants to help people but finds social interaction awkward?

I won’t know the answers to any of those questions until I start, and I’m getting really impatient to do that. Actually, I was already impatient back in — holy cow, it was February; how time flies — when I enrolled, but now that it’s only a month away I am really ready to get started. I’ve got my textbooks, a spiral-bound notebook for each a class, and I’m ready to do this thing!

But I still have a month. So I’ve been trying to set goals for this month that will get me ready to really get started — I want to make sure I am relaxed and rested, and I want to establish some new habits that I can hopefully keep going. One of those new habits is committing to a weekly blog post, of which this is the first. (Yes, it’s Sunday so it took me all week, but I’m hoping to get some momentum going!) Another is establishing a daily spiritual practice that is sustainable and can help keep me grounded as I move forward. But as much as I’ve been wanting to try new things lately, establishing new habits is really difficult.

Some of the difficulty probably comes from trying to adjust my existing routines. I don’t really have a rigid daily routine, where I have to do things in the same order or at the same times, but there are certain segments of the day where I feel like some things fit and other things don’t. For example, while I take walks multiple times during the day, other forms of exercise really only feel right in the morning. So does spiritual practice; if I want to establish a daily routine of meditation or prayer, it needs to be in the morning. But then, both of those get disrupted quite easily if I have a bad night’s sleep and don’t wake up as early as usual, or if I have something else going on that day that breaks into that time. I feel a lot of resistance toward simply doing them at a different time that day, and unfortunately once that habit gets broken it’s very difficult to reestablish it.

So I am relying on lists, reminders, and a new journal (with sections for yearly, monthly, and weekly goals) to keep me on track this time. And I am allowing myself some flexibility in just what I do for my spiritual practice; it doesn’t have to be the same thing every day, or take the same amount of time. Same with what I focus on each day for this month — there are some things I’d like to finish up before I get busy with school, but I also want to avoid putting too much pressure on myself in this last month of summer break.

Because things are going to change soon. And I can’t wait to get started.