June 19, 2015

On collecting labels

Posted in Marginalization tagged , , , , , at 2:43 pm by chavisory

The inspiration for this post emerged somewhat tangentially to an incident on Twitter several months ago, in which a pair of parent bloggers decided that publicly posting sensitive and humiliating information about their autistic teenager was a great thing to do for awareness. Plenty of other people wrote or responded to the inciting incident, so I don’t really feel the need to address it much further.

But something else happened in the aftermath that I actually do think deserves to be talked about more.  It’s not even really about autism or disability itself as much as it’s about language deprivation and identity and the denial of minority experiences as genuine.

In a comment on one of the early Facebook threads about this particular series of Twitter posts, I said to this couple, “You need to read up on what exposure anxiety is, and what its effects are.”  (Exposure anxiety isn’t even the central subject of this post, although I do recommend everyone to read about what it is.)

They said that they weren’t interested in anything I had to say. Nothing new. But a couple of other people were, and there was a conversation about what exposure anxiety is and why it matters. One friend said yes, that makes so much sense as to why the kids she teaches are often able to do some things but not others even though they seem closely related. One friend of a friend said “Holy cow, there’s a word for that?? That’s really a thing?!” and started a Facebook discussion herself about having been so glad to find this out.

And it was not very long at all before someone was accusing her in comments of “collecting labels.”

This is a really, really common accusation against people with a diagnosis of some kind. That we’re just “collecting labels,” “collecting diagnoses,” and “identifying too much with a diagnosis,” closely related to “using it as a crutch,” or in contrast to the ideal of someone who “doesn’t let their disability define them!”

But listen, people who make this accusation? People who don’t understand, because you’ve always just felt like a normal person?

You also go through life collecting labels. You also have a whole collection of terminology and shortcuts and vocabulary for thinking about how you work and things affect you.

The difference is, you grow up with a common language for common experiences with the people around you, for the most part. We don’t. We grow up often in a void of knowledge and vocabulary for how stuff works for people like us, and often deliberately deprived of it. (When parents decide to just never tell a kid about their disabilities? That’s what they’re doing.)

We try and try and try to make the language that we have available fit our experiences, trying to meld and forge and hammer language around experiences it wasn’t built for. Or we try to shoehorn our experiences into the language available.

It never, ever quite works, and the cognitive dissonance can tear you to shreds, or leave you feeling unreal in your own life, or like you’re kind of always walking through the world as a ghost.

Or you start making up your own language for things just to have a reference point if only to yourself. (In many instances, I’ve seen it turn out that different autistic people have come up with almost exactly the same language for a certain thing, almost or totally in isolation from each other. Or that even if I didn’t come up with the language, I’ll hear a phrase or piece of terminology and know exactly what it means, the first time I’ve ever heard it, because it describes so well, so intuitively, something that I’ve never been able to.)

I think you don’t actually do less label-collecting than we do, you just get to do it in a way that’s taken for granted as normal, from a much earlier age. I mean, unless you just don’t use descriptive phrases for the things in your life or the experiences you have in common with other people, or what your problems or weaknesses are, that help make sense of those things to you. Do you use any kind of shorthand language to describe your needs usefully to both yourself and others in a way that makes it more likely that you will be able to find some kind of solution or assistance?

That is what gets us told not to “use it as a crutch.”

Your right to learn how to apply language to your experiences is taken for granted, because your experiences are largely taken for granted as real. (The core belief, at the basis of most prejudice about disability, is that it is fake.)

Typically developing kids are widely regarded as having this right. Disabled kids, queer kids, kids who are atypical or exceptional in some other way, are not widely regarded as having this right.

We tend to be much older by the time this starts happening for us in a meaningful way, or by the time the crazy patchwork of scattered fragments of information starts looking like a coherent understanding of why everything is different for us.

Of course we’re thrilled when we start encountering explanations for our experiences that are more accurate, and useful, than stupid, lazy, rude, psycho, freak, immature, dumbass, selfish, stuck-up, incompetent….

Because for as much as some people have a problem with us collecting labels, they don’t seem to have such an issue with giving them to us. It’s almost like their problem isn’t with people having labels, it’s with their own inability to accept that any experience of the world is genuinely different than their own and warrants different methods of coping.

Or that for once they aren’t in control of what other people get called or whether our experiences are taken seriously.

I mean, try picking one thing about yourself, one thing you know intimately from long-term personal acquaintance, either positive or negative or just important, that’s really important to your ability to understand yourself and make sense of how the world works for you. Try imagining that you don’t know any words for that thing, and you never have. And then you find some.

In that moment—spoiler alert—you feel like the richest person on earth. You’re rendered speechless with astonishment, or you want to whoop with the thrill of recognition.

And then someone comes along and goes “Ugh, you’re just collecting labels.”


  1. karalianne said,

    This stigma is part of why I won’t bother getting assessed to see if I’m also autistic. I don’t really need the diagnosis anyway, and that’s the main reason, but yeah. And I’ve been told (many years ago now) that “more labels would not be helpful for you” but sometimes you need them, you know?

  2. Patricia said,

    Reblogged this on Spectrum Perspectives and commented:
    Lack of knowledge/understanding of another person’s lived experience in no way invalidates that lived experience.

  3. Lyn Pham said,

    Thank you. Your explanation is clear and will help me in discussing autism with those who try to shut me down saying I should not label others. I don’t label to categorise people, I use them to help me understand people.

  4. Dani Alexis said,

    For me, one of the most important contributions that labels make is that they give me keywords for research. Seriously. How am I supposed to learn to manage a problem I have if I don’t have the keyword to search for in order to find information on that problem?

    Maybe that’s a thought experiment for the label-slaggers: Say you come home one day and a pipe has burst and your entire basement has flooded. And you’re like, “crap, I need help, this is distressing me.” So you go to look for help…but you don’t know the word “pipe,” or “flood,” or “basement,” or “plumber.” Meanwhile, your friends keep telling you the house is just fine and you need to stop labeling it because in the end, don’t we *all* live in houses?

    • chavisory said,

      I love this comment to the moon and back.

      Or even better…Let’s just say your basement had always had flooding and humidity problems. There are mushrooms growing. And your attic had always had ghosts. But most houses where you live don’t have attics or basements….

      Try to describe what’s wrong in a language that doesn’t even have words for those things. Keep trying even when everyone answers “Mushrooms only grow outside, duh. And you’re making up this ‘attic’ thing. MY house doesn’t have one, so that can’t be a real thing.”

      Okay, but the ghost….

      “No, you’re making up ‘attics.'”

      • Dani Alexis said,

        Oh my gosh, this.

        “Basement? You mean, like, a floor *beneath* the floor you walk in on? That’s, like, underground? Oh, honey. You’d best stop talking about such things, or someone’s going to think you’ve…you know, lost it.”

        – my mother, probably

  5. Irma Zoulane said,

    This article is so exactly on point, thank you. Being able to name one’s experiences, yes. The word “attic” instead of “the space above the house and below the roof that’s indoors, but not in the house.” This is common sense that seems to disappear when denial or discomfort with disability or difference kicks in.

    And I’d go further, that the right of anyone to choose their own words to describe their reality is sacred. It happens to be a fundamental human right. Going against it with censorship or berating is akin to silencing, negating experience, stealing voice.

  6. Doug said,

    Interesting because I’m writing a novel, “The Fog of the Caveman’s Blog”, where a make up words that sometimes represent pages of explanation. I have a fictional word for “autism or rather the banned word, Asperger’s Syndrome” for one of the characters so the reader has to figure out what the problem is without using stereotypes to shorten their thought process. It’s a puzzle to me why they had to drop the word “Asperger’s Syndrome”; it’s almost like the next step will be to drop all categories and just say “You’re on the ‘Crazy Spectrum’ with various symptoms that we don’t understand, but need to repress in various ways”. I’ve made fictional labels and maybe I can get away with it in a fictional novel.

  7. Pqw said,

    Self-dx’ed as autistic 6 wks ago, after a lifetime of wondering why I felt like a space alien, but no one could tell me *why*. THIS post x 1000000. Omg, this post.

  8. Pqw said,

    Oops, forgot to say… I’m 49.

  9. I am glad you brought up exposure anxiety. I have never heard of this and though I did a quick read on it I still don´t understand it. I think this is something I need to understand, for myself and for my son. I am going to look into it. Thank you!

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