I’ve been going on about my neurodivergence a lot lately, and that has sparked up a ton of interesting conversations about labels. I’ve been waiting for it all to congeal in some kind of logical structure, but it’s not happening, so here is a pile of label-related stuff.
Are labels bad or good?
To me, that’s like asking “are screwdrivers bad or good?” A label is a tool. Do you need it? What are you using it for? Are you hurting yourself or others with it? A screwdriver is useful if you’ve got some screws to deal with. It’s not much use if you want to brush a kitten. It won’t do you much good if you stick it up your nose, and you might want to think about it before sticking it between someone’s ribs.
I am personally rather conflicted about labels and diagnosis in general. I didn’t get mine until rather late in life, partly because some issues just weren’t popular knowledge, but mostly because my mom would have rather pushed me under a bus than be the mother of a wonky kid. Not getting diagnosed while being placed under intense academic pressure “encouraged” me to develop some nifty coping strategies, but it also meant that I struggled for years and years without even knowing that I was struggling. I had no idea that I was overcoming issues most other people never face. I am pretty pissed off about that. On the other hand, I am painfully aware of the fact that now, with the kudos parents can get in certain circles by having “special” children, I would have suffered the opposite fate: my mother being very persuasive, I would have been diagnosed with everything going, gotten medicated to within an inch of my life, and probably only got enough help to make my mom the Best Neurodivergent Mother Of The Year. I am 100% sure that my life would have sucked much more with that kind of “help” than without.
However, I still find my labels useful. I use them for:
- Reminding me of the way in which I differ from other people. That gives me a better understanding of the causes of certain interpersonal issues, which is nifty. Perhaps more importantly, it enables me to be kinder to myself. I need things that other people may not need. That’s just the way it is. The ideal person to ensure that I get those things is me. It’s a damn sight harder to look after myself if I ignore my own needs.
- Explaining to people why what works for them might not work for me. Most people assume that their experience is universal, and many will fight you to the death if you try and convince them otherwise. Being able to say stuff like “that type of motivation doesn’t work for me because I have ADHD” tends to cut down on a lot of crap.
I find labels less useful for:
- Self-limitation. “I might as well not try to do X, because I have ADHD” isn’t terribly useful to me. I could think in those terms, but I choose not to. The line of thinking I favour is “how can I help myself do X, taking the ADHD into account?”
- Emotionally blackmailing others. There is a line between arranging a mutually comfortable middle ground between myself and others, and demanding that they ignore their own needs because my neurodivergence demands it. It ain’t even that fine a line. I don’t want to be that person.
That ain’t even real!
None of my diagnoses are official. I picked one up entirely by accident; I was tutoring students with learning difficulties, I asked a couple of odd questions on some topics, my supervisor grew suspicious and ran a couple of tests, and – hey, presto! – dyslexia. My ADHD diagnosis is from a professional self-assessment test, but I’ve not bothered getting it formalised by a medical professional. I could probably insist on getting some official tests, but my life doesn’t require that. And – and this is the important bit – the lack of a professional seal on my diagnoses doesn’t make them less valid or less useful.
Official diagnoses, particularly those coming from schools, tend to be a reflection of the results of the impact of an issue – not of the impact of the issue on the person, but on how it affects their performance. Little Billy is struggling to learn to write, the school runs a few tests, and it turns out he’s got dyslexia. Little Bobby also has dyslexia, but his grades aren’t affected enough for anyone to notice. Maybe he lucked out and he managed to pick up enough workarounds (thank you, cursive). Maybe his parents force him to work on his homework until it’s perfect, so he’s exhausted and desperate but making reasonable grades. He still has dyslexia. He’s still working harder than his classmates, because he has to manage the work and the workarounds. He still has the superpowers dyslexia gives him. He could still benefit from knowing that he sees the world in a slightly different way. And, whether he gets a diagnosis or not, his dyslexia is just as valid as Billy’s.
I appreciate that official diagnoses are extremely important when trying to get help. I appreciate that self-diagnosing is fraught with dangers, particularly if one is of an anxious disposition. But I still wish the gatekeeping on this issue would die in a car fire.
You would say that?
A million years ago, when I was taught how to teach people with learning difficulties, I was told that I couldn’t say that someone was dyslexic. I had to say that “they have dyslexia,” because “they were more than their disability.” While I appreciate the intentions behind that kind of effort, I think they are ultimately rooted in the problem they’re allegedly fighting against.
I am dyslexic. I do not “have dyslexia,” because my dyslexia isn’t a disease. Those kind people banging on about how “I’m more than my dyslexia” can fold their banners up neatly and stow them, because duh. Of course I’m more than my dyslexia; but it is a part of me, a vital component of the way in which I interact with the world. It’s not going to go away, and I would not want it to. If you took my dyslexia away, you wouldn’t have a better version of me; you’d have a different person. Maybe that person would be cool, but they wouldn’t be me. Furthermore, calling me “dyslexic” doesn’t make me feel less, because being dyslexic doesn’t make me less. Anyone who thinks that is coming from a position of entrenched ableism, and the problem sits with them, not me.
….but I still say that “I have ADHD” because that’s the way I’ve learnt to say it, and it rolls of the tongue more easily than saying “I am an ADHDer”. If any of y’all has got a better option, I’ll take it.
Which isn’t to say that people don’t have the right to pick their own labels, or that communities don’t have the right to fight against stigmatising labels. I am merely curious as to where the focus of our efforts went. If those terms weren’t considered offensive or limiting, using them would be a non-issue. Is banning those terms really the best way to fight against the associated discrimination?
I am starting to think along the same lines about other terms, particularly those relating to the effects of trauma. There is a big push in self-defence to stop people from labelling themselves “victims,” “damaged,” “broken,” and so forth. The idea is that such labels are self-limiting and/or manipulative, and that is probably about half right about half of the time. It ignores the fact that words can mean a lot of different things to different people, and can be used for widely different purposes.
“Weak” labels aren’t necessarily used for self-flagellation or emotional blackmail. For instance, people may call themselves “victims” because they are innocent of what happened to them, and holding onto that fact makes them feel better. The label doesn’t have to carry any connotation of permanent damage; it can merely indicate that something majorly bad happened to them, and that they weren’t at fault.
A friend of a friend commented that she labels herself as “broken” because she is aware that she has suffered and still suffers as a result of her early trauma. She lives with limitations caused by that trauma. If her abuser had broken her limbs in a way that rendered them permanently damaged, people wouldn’t begrudge her the label, right? But because it’s “all in her head,” she has to fight for it. I hadn’t considered that point of view before, and I only disagree with her because I’m painfully aware that people are assholes about physical damage, too. Chances are that she could have no working limbs left, and people would still begrudge her the way she chooses to label herself – and it would all be done for her own good, to give her more agency, because that’s totally how that works.
As for labels becoming so sticky that they become an obstacle to recovery, any label can do that. The problem is how the label is used, not the label itself. And if that’s the concern, replacing “weak” labels with epic ones is not going to help matters, so we ought to toss “survivor” right out the window.
I think we should be able to pick up and use the labels we find useful in that moment, and discard them when we no longer find them useful. This is going to sound unduly Zen, but our self isn’t a constant; why shouldn’t our labels change as we do? And, if we allow ourselves to try labels on and pick the ones that truly fit, the ones that make us better able to face the day ahead, should any third party really have any say in it?