At one point, another person diagnosed with autism asked me why I would refer to myself as "bad brains" and if this was a joke. It's not a joke at all. The most obvious explanation I can think of for calling myself bad brains is that I'm committed to being as negative about disability as I care to be. I don't necessarily feel like people who talk about their disabilities positively are just characterizing themselves that way for political reasons, but that's not the way that I'm made. Maybe it's even part of my disability that nearly everything is the end of the world, and at the same time nothing is. It would be completely out of character for me to talk positively or even neutrally about being disabled, and I don't think I should have to do that to have my opinions about anti-ableism respected.
But this motivation--reclaiming negativity about disability--actually isn't even the major appeal of a bad brains identity. One of the big things I love about the phrase bad brains is that it can be used to indicate a lot of different things, and one of those things is a flaring up. It can be really hard to get respect from other people, or even feel that you deserve respect, if you don't have a disability that looks the same every day. When you are suddenly slow (or suddenly sad, and that makes you slow), or suddenly so angry that you can't tolerate doing anything slightly difficult or stressful, there isn't really anything to call this to try to explain why you're making what seem like very silly and strange decisions in an attempt to look after yourself, or why you can't do the things you can usually do. So I like to call it bad brains, as in, "I'm having bad brains today," or, "My brains are too bad to do that right now" or, "Sorry but my brains are about to go bad."
This isn't necessarily something that everyone understands, but some people pick up on it, some people in my life have learned what it means and, most importantly, it helps me explain and justify things to myself. It used to be completely unbearable because it felt unexplainable and overwhelming when things just went different for me and became much harder or more painful. I felt lazy and weak. At least now I can think of it as kind of like having a cold.
In addition to being really catchy and practical, bad brains is my identity of choice because it is so vague. I kind of hesitate to say this because I don't want to sound like I have some problem with having autism or that I don't identify with the Autistic community--obviously at any point when people with autism are being counted I will be specific and say that's what I am--but on a practical level and I guess a loyalty level, I don't really feel that AUTISM AUTISM AUTISM is the way to describe me or anyone. I'm just feebleminded, bad in the brain, slower than molasses going backwards, batshit, a lid-flipper, too stupid to live, NOS, awesome fuck-you surprise. Walking corpse. Magikarp refuses to evolve.
Autism is a big word, and I think if I attempted to say that what I experience is the definition of autism, that wouldn't be any more acceptable than people saying autism is a social disability. A lot of the people I feel really close to were diagnosed with autism--at the same time so were some people I couldn't feel less close to--so maybe let's just say that autism is a big word that describes what some disabled people look and act like, more or less, especially when they're young. I know this seems like a really aggressive rejection of the label, but I feel so extremely not represented by what professionals say about autism, while also being similar enough to a lot of other people who were diagnosed with autism that I don't think the classification is meaningless.
When I meet Autistic people who resemble the Asperger's stereotype (this is mostly visible in how they converse), I feel a certain sense of attachment and relief. But it's not any more than I would feel if I met someone with an intellectual or psychiatric disability, or even if I met someone who wasn't diagnosed with a disability but has a lot of similar stuff going on. In fact, in some cases I can feel a stronger sense of attachment and community (in terms of what we are like, and what our disability is practically like) with a person who belongs to one of the other groups than with a person who belongs to the group that's supposedly my group. It's true that all the people I'm close to online have autism, but that isn't the case with the disabled or disabled-ish people I'm friends with in real life.
I like to say bad brains because I think it is kind of a way of being more practical by addressing exactly what is going on. My early life doesn't really matter right now, what matters is what I have to manage and what I'm experiencing day to day, which is bad brains. It also matters what I have in common with other people because if we're dealing with similar things we can help each other. That "what" is bad brains, not autism.
Bad brains is not your medical history. Bad brains is just a fact.
The problem with the word "autism" or "Asperger's" is that the minute you say, people think they know what you're talking about and they get this picture in their heads that isn't necessarily one of you.
ReplyDeleteThat's probably why I prefer the NLD label. Because nobody knows what the fuck NLD is, so they won't assume they know all about me when they really don't.
Hi Fiona, I miss you! I feel the same. I also feel though that I shouldn't not use the word autism since it is true and I don't want to add to the stigma by avoiding it. But I am sometimes more likely to just say I'm disabled.
ReplyDeleteI actually love the phrase "bad brains" and it describes some things very well. I personally do feel like I need to portray my experience with disability positively but to me that doesn't mean pretending that I don't have any problems. If I say "bad brains" and someone hears "My life sucks" then they aren't getting what I mean.
ReplyDelete...yeah I'm thinking about this and it actually explains a lot now. I think people actually project their discomfort onto me and then get upset that I'm "being negative." Disabled people should certainly be allowed to be negative sometimes, but I'm seen that way even when I'm not, just by admitting to not being able to do something well/at all.
I am stuck on the awesome of "awesome fuck you surprise."
ReplyDeleteAnd more so, in the way that some people would repeat with more and more emphasis markers:
"Magikarp refuses to evolve."
(I'm not sure if this is because my crumbly language issues tonight has me fixated on awesome catchy phrases or what. But. "Magikarp refuses to evolve.")