Revisiting labels: Why “labels are harmful” is bullshit

So, I’ve posted before on why “labels are harmful” is harmful. Now I’m going to talk about why it’s bullshit. This is a re-write of a forum post I made once, edited for typos and clarity.

One of my biggest irritations is people who tell me I shouldn’t label myself. “You trap yourself in a sick narrative,” they tell me. “It changes how you think of yourself – you’re not you, you’re a sick person once you label yourself. It’s not helpful.”

To which I say, in a very heartfelt manner: That is fucking ridiculous.

Allow me to explain: People who have problems with labelling seem to have a magical thought process that if the label isn’t there, the illness, disability, or what have you it exists to name will disappear. Don’t label yourself as sick and you won’t be!

This, quite frankly, is bullshit.

When my lung function was pooped out at 40% of my normal at max and I was having >30% peak flow variability in a day, I was really sick. Realizing that it was a relapse of my childhood asthma and applying a label to my illness didn’t make me sick. I was already sick. And not having a label for my sickness didn’t make me magically well. I was, as I said before, really sick. What applying the label did is give myself and medical professionals I was working with a handle on what was wrong. I could (and did) search journals for info about asthma and for info about comorbidities to worry about and possible conflating illnesses to rule out. It also gave us an idea of where to start with medication, and where to go for our plans B, C, D, E, F, etc. It wasn’t all sunshine and daisies after we got the right label applied to my illness (I had trouble with a doctor who didn’t believe that the first-line treatment wasn’t helping, and eventually I had to switch doctors because of it), but it gave us a place to start from.

Likewise, not having a label for my attention issues when I was a kid didn’t mean I didn’t have those problems. It didn’t mean that I magically was a well-behaved student in elementary school, that I wasn’t up till three or four in the morning every night in high school with insomnia, that I could get out the door without forgetting at least one important thing, that I could remember to eat if I was absorbed in something. It didn’t make my handwriting neat enough for me to read it (I still have a hard time reading my own writing unless I make an effort to be neat – and don’t even try my cursive), it didn’t make me coordinated enough to not trip over my own two feet in gym class, it didn’t mean that I didn’t have meltdowns where I’d hit people and break things and not know why, it didn’t mean that I could handle the school cafeteria (I often ate in the bathroom in the winter, or outside in the summer because the cafeteria just was so loud and chaotic and overwhelming even when the bullies who would ruin my lunch for shits and giggles weren’t there that I wouldn’t be able to eat), and so on.

It did mean that I knew I was different from the other kids but didn’t know why because my child psych didn’t feel that labels were helpful.

So instead of knowing I’m different because (reason), I was left with knowing I’m different but having all the adults in my life lie to me and tell me that I’m normal and that there’s no reason why this should be harder for me than it is for most kids so if I found it harder it was because I was lazy, stupid, irresponsible, and just plain unlikeable. Sometimes they said it explicitly, sometimes they just heavily implied it.

Labels do not make people sick. They do not cause people’s problems. They exist to put a name to something that the person likely already knows they have. In that way, they’re helpful, because once you have a name for something, you can unlock all of the knowledge in the world about that thing. But first you need a term for it.

Labels do not change peoples’ identities. A person forms hir identity through hir experiences. I identify as an asthmatic not because I’m labelled like one, but because I fucking well have asthma. And thus I’ve been through the hoops of poorly controlled asthma. I’ve been up at three AM unable to breathe. I’ve been blue in the ER. I’ve dealt with obtuse medical staff who are unable to recognize that cyanosis in asthmatic = breathing troubles even if there’s no wheeze. And so on. I call myself asthmatic because I am asthmatic, not because I’ve been ‘labeled’ asthmatic. Likewise with my attention problems.

By contrast, not labeling causes harm. Let’s conduct a thought exercise:

Imagine that you have a weird glitch that makes an important program for your work non-functional. And there’s no workaround. And everyone around denies that this problem exists. Your computer works fine, what are you talking about? See, this completely different program isn’t glitching at all! If you don’t know how to use that other program, you should just ask and we’ll teach you.

So you ask for training, even though you’re pretty sure you’re doing the same thing as everyone else. The training confirms your suspicions. They give you step by step instructions, except on step 3, your program shuts itself off. On the training computer, it works fine, but when you return to your computer, it shuts off again.

People at work are getting angry with you. Why isn’t your work done? What are you doing with your day? Why can’t you work like Morgan One Desk Over? Hir work is always done on time. Etc.

And you try to explain that your program isn’t working. And they don’t believe you, because when you load the program, it looks just fine. It looks normal.

After a while, you’ll collect disciplinary action. And get a reputation for laziness and being a complainer since you’re always whining about that program that works just fine for everyone else. You just use it as an excuse not to work, others will say disdainfully. You’re too dumb to figure out a simple GUI, others will sneer. There’s nothing wrong with your program, so it must be some problem with you why you’re not getting work done. You have a problem with the boss because you’re too negative and don’t get your work done. There’s nothing wrong with your program. There’s nothing wrong with your program. It looks fine. Nobody else has this problem, so what are you talking about? There’s nothing wrong with your program. You’re being lazy. Just work harder.

That’s what it’s like to have a problem others don’t recognize and not know what it is. Only it’s worse, because it’s not a computer program, it’s your mind or your body that’s got something different.

Then imagine your giddy relief when an IT person is called in to help with the printer and you ask hir to take a peek at your program. The IT person realizes that it was corrupted by a power outage a while back and reinstalls it for you. Xie teaches you how to recognize when the program is corrupted, what to do when it’s corrupted, and how to prevent it from becoming corrupted in the future.

That’s what it’s like to get a diagnosis (label) and a strategy to address your issues.

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15 thoughts on “Revisiting labels: Why “labels are harmful” is bullshit

  1. autisticook says:

    I don’t like blanket statements. (That is a blanket statement). Some labels are incredibly helpful. Some labels can obscure other issues. Some labels are ones that are not of your own choosing, and those are nearly always bad.

    • ischemgeek says:

      Yes, of course. I was more targeting the people who are all, “Don’t call yourself that!” when I say I’m asthmatic with the above post.

      • autisticook says:

        Yeah, that’s the part that pisses me off as well. If I choose to label myself, don’t go around telling me I shouldn’t. Telling other people what to call themselves is not a good idea. Ever.

      • Wait, for your asthma? See, this is why, as a mental illness advocate (uh, in the sense that I openly rant at mental illness stigma… nothing professional), I cringe when I hear some in my camp talk about how people with physical illnesses never have to deal with this sort of thing.

      • ischemgeek says:

        Asthma has an odd history as far as physical illnesses go, in that until relatively recently, it was believed that it was a mental illness, not a physiological one. Thus, asthma often gets splash damage from mental illness ableism, and asthmatics often get told they need to tough it out and willpower and all that, just like those with mental illnesses.

  2. Yeaaaaah. So, incidentally, my not being labeled? Almost killed me. More than once. For the anti-label people at home, please take notes, because I can tell you right now, DEATH is a hell of a lot more limiting than labels can ever be.

  3. suburp says:

    Interesting. I didn’t know that people have that sort of attitude for asthma….?
    How is that helpful? If you and others are conscious of it, can’t you all react better when it becomes important…? I mean “label” has a really negative meaning obviously, but this was exactly the point why I made my first autism related comic with bitstrips. (I know it’s not always well seen to post links to your own blog in comments but it really fits and I don’t know if you have seen it…)
    http://suburpcomix.wordpress.com/2013/09/11/should-the-other-children-know-he-has-autism/

  4. Aspermama says:

    The computer program analogy is so insightful. Not having that label can do incredible damage to a person’s confidence. I sometimes wish I’d had that label when I was growing up instead of spending years thinking I was an unlikeable, awkward, and clumsy slob.

    I can understand the downside in that people will sometimes see everything through the lens of the label, and that can be limiting when people don’t fully understand it or have negative stereotypes-for instance, if they assume you don’t want friends and don’t try to help you that way. But that’s easily remedied and it’s still more damaging not to have it.

    • ischemgeek says:

      I think it was chavisory who had a really good post addressing that for Autistics Speaking Day today – there was a line about how the solution to a stigmatized label isn’t to remove the label but to remove the stigma, which quite concisely conveys my views on the issue.

      Mind you, fighting the stigma is a lot harder than fighting the label, so maybe that’s why they do it? Assuming the best of the parents in question, anyway, and not that they simply don’t want to be associated with a “r*****”. Which was the case for at least one of my parents, who has told me as much to my face.

  5. […] has two brilliant (and far superior) posts on the topic, here and here. Which also demonstrate that our experiences were not particularly […]

  6. HAwen says:

    They also pay for medical care.

    • ischemgeek says:

      Depends on where you live – I’m fortunate to live in Canada, so my label doesn’t affect my access to care. But, yes, that’s a big problem in the States and other places with privatized health care.

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