slow

This is a little boring but it does remind me of the overused simile where you feel like you are plunged into ice water. I was at work around midnight, with a resident I really like. Actually the first time I met her I sneakily teared up because she shares a name with my dead grandma, who I remember as a bastion of hyperfemininity and unconditional love. She also just reminded me of her even though she's more snarky. She has a drawling way of talking and moving which you could probably diagnose or not but I think of it as a style. She is always interesting to talk to and encourages me when the steady lift refuses to roll over her oxygen tubes or the cord for the bed remote.

After we got back from the bathroom and I ran over the tubes and cords, I picked her legs up and put them in bed. I aspire to someday do this in a way that doesn't hurt her bad leg, but if there is a way, I haven't learned it yet.

Her: Oh my God.

Me: I'm sorry!

Her: No, I'm sorry...for having feet.

Me: You're sorry for having feet?

Her: For having big feet.

Me: I'd be more sorry if you didn't have feet.

Her: Oh, God. That's one blessing I have.

(At this point I was expecting a joke about being blessed with big feet.)

"All the children were normal," she said. I sort of froze and, after a characteristic pause, she continued, "All the money and time that goes toward an invalid..."

I don't think I said anything else before I left. Maybe I said, "Yeah, well," which is the best response because maybe it leaves room for everything I could want to say. Anyway I had the ice bucket feeling.

At three she put on her light to go the bathroom. I actually felt nervous about what it would be like to talk to her, someone I had always looked forward to talking to before. Once I got her in the bathroom I crouched on the floor because my legs had hit the feeling where they feel like some other appendage that I'm using as legs by mistake. I closed my eyes but weirdly I almost felt afraid of doing this in front of her now as if I didn't want her to see my weakness.

She asked how I could sit like that so early in the morning; she didn't think she could. She had dreamed she went hiking with her daughter in Big Sur, where she has never been. After a while I wondered if she had fallen asleep in the bathroom and if I should try and wake her up.

"How is the bathroom stuff going?" I asked. She couldn't understand me the first time (this is not because she is old; I'm not the best conversation partner for anyone who has the mildest hearing or processing problems in the world). When she understood the question she thought about it and said, "Slow...like me," with a crooked smile. I realized one of the things I most admire about her is the grace of her slowness.

I'm Spasticus Autisticus

I am a big, big lover of this song and I was going to just post it on Facebook as my reasonably uninvolved observance of Autism Acceptance Day. But I happened to find an interview with Ian Dury about the song, which disappointedly ended with him sort of apologizing for mentioning autism and saying it's probably "frightening" for parents. I never thought a dead guy could stomp on my heart so hard, but it was the 80s and there wasn't even what there is now in terms of Autistic-identified people who could have told him not to apologize. So I forgive you Ian Dury, like I could ever be mad at you for long.

The main thing about the interview was that he confirmed my gut interpretation of the song, which is what I really want to talk about here.

"On the single bag there's what's supposed to be an explanatory note, which is about my tribe being...knowing our racial creed and paying no heed to such things...it can be rich or poor, disablement can get anybody. It was really about Spasticus being a slave who wished to be free, and I put at the bottom 'We too are determined to be free.' And it's based on--the idea of Spasticus is based on a film called Spartacus which had Kirk Douglas in it, and at the end bit, they say 'Which one of you is Spartacus,' you know--'I'm Spartacus,' then they all go 'I'm Spartacus,' and they hung everybody that confessed."

I've been moving away a lot from identifying as Autistic, and probably not for good reasons, but just because I know professionals are on a mission to take it away from as many people as they can and it's hard for me to want to hold onto it when every time I tell anyone I have autism they seem determined to interrogate and confound the reality of my disabled life. So I've retreated into just being slow and crazy, which are words that are available for all people at no charge; or if I'm feeling a little more political I use old words like feebleminded or very new words like headcrip--again none of these words are technical terms, and aesthetically and emotionally that's a big part of their appeal.

But this worries me the same way the word queer has sometimes worried me. The problem with only identifying with something vaguely and choosing the word for your identity aesthetically is that there's strength in community, identity, and numbers, and if everyone is called something else it's hard to find and hold onto each other, to support each other and try and work together for the things that will benefit people like us.

I have always thought that one of the worst disadvantages disabled people face is how few disabled people there are. Don't get me wrong, there are shitloads of wheelchair users, people with LDs and DDs and MH conditions, D/deaf and blind people and HOH people and people with low vision, people who use crutches and canes, people who don't use anything but have to live differently because they live with chronic illnesses, and, you know, you know a lot of people like this and you can think of all the kinds of "people like this" I have neglected to mention.

But that's all we mostly are--people like this.

I've said there are two kinds of disability and you end up fighting yourself with either one. A person is stigmatized as disabled, seen as unworthy of the things he wants from life, and has to prove himself non-disabled in order to be his own person, no matter how much he may harm himself in the process by doing things he can't do. Or a person isn't considered disabled and has to do things she can't do because everyone expects her to do them and there is no support. It's a trap either way.

Both ways a disabled person is fighting not to be disabled. The second person might have a nostalgia for the stigmas and stereotypes of "visible" disability, because it seems better than getting no support or recognition, but ultimately she feels too guilty to try and get those things. Holy shit I'm tired. What I'm trying to say is, what do disabled people think about themselves?

Basically: they do not think they are disabled.

They either think of it as something they have "overcome" or "risen above" with their accomplishments or just their personality, or they think of it as something nasty and rude to mention, or they think of it as something they don't deserve to claim because their disability isn't real or isn't that bad, or they think of it as a word that, if they used it about themselves, would indicate that they're sad, that they're giving up.

This has real practical effects on "people like us," this nameless population. We're so fucking short on disabled writers, disabled scholars, disabled teachers, disabled staff, disabled activists, disabled doctors (imagine the DSM being written primarily by doctors with mental disabilities)--we're so fucking short on people who have an identity and loyalty to other disabled people. Because we all think the word disabled is bad for us! We all throw it away and when we do that, we have nothing because we only have ourself and whatever word we have for ourself--not disabled, just different; not disabled, just has trouble walking; just crazy, just stupid, just slow--just perfectly individual and unique and alone. But our people need armies and bodies of work.

If I was going to start one organization to help disabled people, its focus would be to help kids with disabilities meet adults who identify as disabled. I've thought this for a year or two and I don't think I have the skillset for that kind of thing but it does pull on me sometimes, because it's not that people like us aren't talented and tender and brave, but that we all hang separately.

Anyway. I'm Spasticus Autisticus, is what I'm trying to say.

Armchair Farmhouse #1: Clayton

I'm starting a podcast called Armchair Farmhouse and in it I interview people about why they do or don’t identify as disabled and what their history is with that identity. I only want to interview people in real life so I’m mostly going to stick to RL friends but if anyone reading this is near Cincinnati, you should totally let me interview you! I’m especially interested in talking to people who have diagnosed mental or physical health conditions but don’t consider themselves disabled.

My first interview is with my friend Clayton who has CP, ADHD, and general bad brains, and recently identifies as disabled but didn’t for a long time. You can listen to it here or read a transcript of it here.

For the record I identify as disabled not as autistic.

I think if they do dialogues at TPGA again they should include people with disabilities other than autism.

It's kind of tough because I think in some ways these parent-centering issues are worse in the "autism community," not because of any real fact about people with autism or our parents, but because of the social position that autism occupies.

It's a really fashionable disability to be related to, and a really stigmatized one to have (in a complicated way--I think practically anyone can get famous for having autism while the voices of people with less distinguished disabilities are ignored, but it's almost impossible to get a normal job while being open about the fact that you have autism). To hear the average person say it, you would think that autism is the only disability someone's child could possibly have, and after watching TV for a few minutes you'd be doubly convinced.

Kids with physical, sensory, and intellectual disabilities don't have the high profile that kids with autism have, and the same goes for their parents. I'm sure this has plenty of drawbacks. I also think it gives families room to figure things out by themselves and get most of their emotional encouragement from other families rather than from the media. There's also the fact that Deaf culture is the oldest disability culture, and people with visual, physical, and intellectual disabilities have a fairly long history of advocating for themselves that anyone can read about in a book on disability rights. This isn't so much the case for people with autism.

Of course, it's also the case that any book about disability rights is pretty hard to find, and that parents of people with all disabilities are centered. I think in some communities there is more of a sense that this is something to be corrected--from my admittedly limited viewpoint, it seems that things like "Welcome to Holland" are much more of a staple in intellectual disability parent circles than they are among parents of kids with autism. But the idea is still there. The point of view of a person with a disability is always hard to remember to take.

I don't think I would be as into anti-ableism as I am if I hadn't seen how pervasive a lot of things are cross-disability, things that I had previously thought of as "autism problems." The world started to seem more broken to me but also somehow more fixable. I think parent-centering is one of the issues that people with all disabilities, and parents of people with all disabilities, need to talk about.

That said I do think it probably seems like a more severe problem to me and other people with autism than it does to people who have disabilities other than autism, because of autism's high profile and lack of history.

Something worth mentioning

When I started college I made my first disabled friend. His name was Clayton.

I should probably mention Clayton wasn't actually my first friend with a disability. I'm my own first friend with a disability, of course, and aside from that I went to a high school with a high population of students with learning disabilities and mental health issues, and also knew a few kids with chronic illnesses. I didn't consider any of these people, or myself, to fit into the category of "disabled."

What made Clayton my first disabled friend, then? He was the first person I met who had a visible mobility disability, and at the time that's what the word disabled meant to me.

Having a disabled friend was a new experience, like having a friend from a country I had never been to. I asked him how he felt about the word lame. I worried about saying things that would be offensive to "a disabled person." During an intentionally shocking period of our first year, I earned the right to call him a gimp while he would greet me by saying, "Get away from me, you stupid dyke!"

From pretty early on, when Clayton talked about his CP, I would talk about my autism (or my ex-autism as I thought of it at the time. I used to think I had recovered from autism and was just really lazy and stupid, but I'm sure I've mentioned that before). It just seemed on-topic. By the end of our sophomore year I was sort of maybe knocking on the door of coming around to identify as disabled. Clayton told me by his estimation I belonged in the club.

Then we didn't see each other for more than a year.

When we saw each other again, I was Super Disabled and thought of everything in a political way that he didn't necessarily relate to. I always felt privately like my opinions were less legit because I didn't have a "real" disability. Actually if I started to feel like he was outranking me in terms of being disabled, I would start talking about all my mental health problems to make myself feel better. Clayton told me that whenever I left the room, his roommate would be really worried about me.

One time I referred to us as disabled and Clayton said he saw himself as having cerebral palsy rather than being disabled because being disabled seemed like a much more general, worse thing that implied he couldn't do some things he could actually do. This made me wonder about something I guess I hadn't thought through before. Basically I was thinking that if you have a disability that people don't think is legit, identifying as disabled is a relief, but if everyone sees you as disabled, it's kind of something you can be trapped in and not want to identify with.

Then we didn't see each other for like nine months.

After college I came to stay with Clayton and his mom so I would have a place to live while I figured out a job and apartment. Instead, we started drinking and watching all of Vampire Diaries. After a few weeks of this I felt lazy so I decided to start my project where I would interview people asking them if they identified as disabled, and why or why not. I thought it would be clever to interview Clayton since I had initially seen him as the only disabled person I knew, but in terms of identity, I was disabled and he was not. But Clayton said, "Actually I consider myself disabled now. I think I didn't before because people were always telling me I wasn't really disabled."

Apparently someone decided to call and harass RRH on the phone because of the tpga "dialogue." As everyone knows, it wasn't a dialogue, RRH didn't seem to care much about the issues being discussed, blah blah blah, but guess what, that's a totally irrelevant.

Part of being a member of a minority community is that you can't just do whatever you want all the time.

When a person with a disability expresses how they feel about something, especially if they are angry, other people regularly act as if the PWD has done something on the level of calling their house and harassing them. It can be kind of funny to look at this big divide between how someone's being characterized (scary and intimidating) and who they actually are (a disabled, usually young person typing comments on the Internet that are often more polite than the comments of the person who feels so "intimidated").

Well, guess what, there's no divide this time, because someone actually did what non-disabled people expect disabled people to do all the time. They actually did something scary. I'm sure this person was really mad and going through a lot, but, guess what, minority community! You fucked EVERYONE.

Now, I know this seems really unfair. Why aren't I writing a rant at parents who have threatened my own disabled friends? Because they're not in my community. Their decisions are their own, your decisions are ours. I totally understand that this sounds offensive--why can't disabled people just be individuals? I don't know guys, but we're just not, so please do not do things like this.

About Bad Brains

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.

“I can do RAD all by myself”: a fancy About Me section

I was born in 1988 to a rich white family on the East Coast of the United States of America. For those keeping track, I was diagnosed with PDD-NOS when I was 9 and Asperger’s when I was 14--but all that really tells you about me is that I was born in 1988 to a rich white family on the East Coast of the United States of America.

By the time I was 18, I had been undiagnosed many times by people both qualified and unqualified to do so; and after a brief flirtation with Autistic culture I soon succumbed to the implications of the types of praise and encouragement young disabled people often receive. When we succeed we’re told that we’re not really disabled or that we’re different from other disabled people. The idea of being a real average disabled person becomes unacceptable. Being approved of or getting the things that we want is associated with not being something that we are; so, growing up, we bury part of ourselves.

I grew up to be a buried young adult. When I associated autism with myself at all, I identified as “very high-functioning” or “someone who used to have Asperger’s.” I even wished there was a word for someone who was more high-functioning than Asperger’s, since I felt I was on the very, very mild end of that spectrum, almost disappearing into thin air.

I experienced a lot of intense emotions, but ultimately calmness and joy, when I was around disabled people; so in college, I decided that I wanted to work with disabled people professionally. As I began to get experience doing this, I became aware of two things. First, I learned that I liked real average disabled people and would like to be one. I also learned that disabled people were often treated or judged in ways that didn’t make sense but were accepted as natural.

So, I became interested in analyzing and taking apart some of the “natural” judgments and decisions that are made about disabled people, and that’s most of what I do here. In the process of writing this blog and learning from other blogs, I’ve made some real average disabled friends and acquaintances who have helped me get better at being RAD.

In a few weeks I’ll graduate from college and go work at a summer camp for teenagers and adults with disabilities. I don’t know what I’m doing after the summer, so I can’t write a better description of my life circumstances. The best way to describe my “disability experience” is to say I’m a cognitive zombie and an emotional werewolf, but I’d rather not try. I’m Christian, queer, and cis; I write genre fiction about dishonest people; and I used to make pop music.

Here is a picture of me with a book I really like, but unfortunately have to write a paper on soon:



[Image description: a white girl with blond hair wearing a black shirt, blue nail polish, and a ring, sitting in front of a window in a white room and holding up Showings by Julian of Norwich. Unintentionally covering up Christ's face. Overdoes image descriptions and as a result tends to avoid them or put them as alt text so no one finds out how dumb the image description is without using a screen reader, or hovering over the image to see what it says.]

shaky bases

(kind of worry that this post is developing an Oppression Olympics tone, which is so not my intent, to say that one group of disabled people has it worse than another group--I'm just trying to articulate what I'm feeling and why it's different from what people with other disabilities might feel.)

This is hard. I identify as disabled, or Autistic. Or developmentally disabled, person with autism, , or a headcrip (thanks Samantha). Also sometimes a bad brains, but let's stick to what I'm saying in a better mood. Or let's stick to what I say when I'm trying to be objective, which is: autism. ASD.

Something that's really hard about identifying as disabled and having autism, that I don't think is an aspect of being blind or having cerebral palsy or being deaf, is the feeling that the base of your identity is subjective or could be taken away at any time. Like--identity comes in two parts, the objective fact and the actual identity. You're deaf or hard-of-hearing and then you're also Deaf. Or you have a physical disability and then disabled or PWD or crip can become one of the important things about you.

Anyone can argue with the idea of disability identity or indeed any kind of identity, but generally they can't argue that someone who has cerebral palsy and identifies as a "crip" doesn't have cerebral palsy. They can argue with the word crip and the idea behind it, but they can't deny the CP; or if they do because it's not that obvious from the person's physicality, I can't imagine it can shake you up as much. Because...if you have CP, you know you have it.

Whereas the idea of autism is this incredibly odd thing that almost no one can live down to in real life. I always hear (and read) doctors saying things like, "this kid had an autism diagnosis but he hugs his family," and instead of the response being, maybe I had the wrong idea about autism, it's always, "so many kids are misdiagnosed with autism!" (and this is not a new thing, I read it in a book that's 15 years old). And, technically, they have the authority to say that, and so many of them do, so it's like, you objectively have autism only as long as a particular doctor said it, but you're just waiting until the next minute when another doctor will say you don't. Because all these things--not necessarily accomplishments but feelings, qualities, where your eyes go--will mean that to some person or other.

The doctor I went to recently to get learning tests didn't have particular experience with autism, and I didn't think that would be a big issue for me. I did want a rediagnosis of PDD-NOS, which I was able to badger him into, but I mainly just cared about knowing what my learning and thinking problems are and I didn't really care if he called it ASD or NVLD or ADHD.

But, you know, he called it the last two, and it made the process of talking to him really strange. We talked a lot about personal stuff before the testing started, and obviously I mention I have autism when I talk about myself; it's part of my life, and sometimes I say, "I also think this might be going on, because I talked to some of my friends who also have autism, and they have also experienced this..." The doctor, while very nice and very good at thinking about learning disabilities, obviously didn't know anything about autism--I'm not being a bitch, it was just clear that it wasn't his field. So there would be this little record-scratching sound whenever I said the word.

"You keep saying you have autism. Who told you that?"
"Oh, this isn't about autism..."
"Autism? I thought we decided to throw that out."

Like, I was seriously at a point of wanting to be like, "Whenever I say I have autism, just pretend I'm saying I'm Catholic or I have arthritis or I have dual citizenship or I'm a twin. It's not up for debate, it's part of my life."*

It just is really weird to have the base of one of your identities be something that everyone always thinks they can argue the legitimacy of. The untoward lady helped me about this a little bit by saying that maybe the most objective way to define autism is by whether people who identify as having it recognize it in each other. And I guess we are the people who have thought about it the most and lived with it the longest. But we can still never prove it even if we know it ourselves, and that's something that makes us different from most other people who identify with disability culture, I think.

*these things=actually not true

also: JINX!

me: it's so weird to have this identity that's massively important to me that I feel like someone could just take away
untoward.lady: nods
I have felt like that about my autism for a long time
...
you know something though? A lot of people have told me I'm not autistic or "not really autistic" or some other you're-really-"normal" statements but I have never, EVER been accused of being neurotypical by an autistic person
ever
sometimes those who have power over us, like doctors and "autism moms" and bureacrats and stuff will try to deny us who we are and tell us that we can't belong to our community
but that's why we have a community

from the inside, #3

Talk disabled to me.

If you want me to have a crush on you and/or consider you one of my best friends, this is a pretty surefire way to do it. I'll make it easy for you, actually, if I think you're going to be good at it. It goes like this:

"Wait, well, I mean, do you think I'm really disabled?"

And then you list the reasons I am disabled.

My friend Ari does this. He is Up There in my estimation as a result. One time he spent a really long time telling me all about how I'm disabled in different areas. It basically felt the same as if he made me a cake.

Some people will have no idea what this means and will probably take it as some kind of self-hatred. That's cool, you guys, because I actually hate you for having that reaction. These posts are called "from the inside" because they don't concern themselves overmuch with explaining a bunch of context to people who haven't experienced it and can't put two and two together to understand how other people feel.

If you do understand how I feel...well, I don't hate you. And if you want me to opposite-of-hate you, you know how to do it.

I know this is problematic, bear with me

On tumblr Josh reblogged a post called how to respect someone with asperger's syndrome. I'm sorry to tell you that at this point in my life I'm so grossed out by the word Asperger's that I actually didn't want to reblog the post just because of this, even though the post was really good. But then I thought maybe I could reblog it because I noticed that Josh had added the following:

I identify as “autistic” or “ASD” now instead of aspergers. They’re both an accurate description but “aspergers” seems so tied up with a stereotyped image of ultra-male brained maths geeks that it is of little use as a way of explaining myself to people.

So I wanted to reblog it and add my own thing to that (although I also agree with what he said) but then I was like, wait I bet my own thing is going to be ultra long and should probably be...

Somewhere Else!

So. I've actually posted about this a ton of times--the whole identifying as Autistic/ASD/having autism, rather than Asperger's, thing--and so has everyone else in the world, but I always find myself having more to say about it. There are two explanations I have used, either separately or together.

1. "Asperger's isn't my only ASD diagnosis and besides, if forced to choose, I think my other diagnosis is more accurate." This is true and it's an explanation I really like because it sounds more straightforward. Except, I happen to know that this is a really weak excuse because I've known about all my diagnoses longer than I've been using the word autism/ASD about myself. So that's not it.

2. Blah blah blah politics. The political explanation is something about wanting to show solidarity across the autism spectrum because those categories are artificial and badly defined, which I totally support of course--but that doesn't explain my intense hatred for the term Asperger's. Like, I actually cringe if someone uses it about me and I don't think any of my friends or even my parents would use it about me at this point.

So is this because autism sounds cooler? Because I want to shock people with a really stigmatized identity? I've definitely seen this accusation leveled against people with AS diagnoses who identify as A/autistic, and this was definitely the reason for my identifying that way when I was fourteen, but yeah I don't think it's true anymore now. So why is this word so important to me--solidarity aside, on a pure individual level of the word I like to use about myself?

Okay, so:

I think there's a certain point of mildness, or invisibility, or lack of certain support needs, at which a person with a disability is kind of existing with a foot in another world. I don't use this term to imply something about people with ASD being from outer space or whatever the line is; especially as I'm not just talking about people with ASD. I'm thinking of people with mobility disabilities who don't use wheelchairs, people who are blind who can sort of see well enough to fake it, and people with ASD who can--well, talk pretty fluently, I guess. I'm not using the word pass because I think there are definitely some people who don't pass and still belong to this category.

What's odd about having this kind of disability experience is that people don't read you as disabled in such an immediate way, and you can kind of fit into images of non-disabled people (even if you don't do it well). And you end up feeling, rightly or wrongly, that disability isn't going to suffuse your life the way it does for those other disabled people. You can just do what everyone else does.

And for some people maybe this is really true, and for some people it becomes clear that it's not. And some people like me will have the heady and crushingly depressing and exhausting experience of having that thing be true and false at the same time. But if you're going through this and there is any misery at all, I think you have to be able to know that there really is life in that other world you have your foot in, the world of what you think of as failure--people who need staff and dogs and letterboards, people who can't hide from it like you can.

You have to know that you haven't escaped. Or even if, like me, you keep kidding yourself that you have escaped--a part of you has to be able to tell you that disability is a piece of something inside.

I know analogy is dangerous, but this all clicked for me with the thought of cerebral palsy, just because I knew a few people who had it and I knew it could mean a lot of different things and look a lot of ways, and some people were in my category of attempted escape. I thought of a person who could walk saying honestly, "I have cerebral palsy," and for some reason this was so beautiful it made my head explode.

For me, saying "I have autism" to people who think of me as normal--to whom Asperger's is this quirky 21st-century meme that is almost just a Myers-Briggs personality type--is a way of saying, parts of me are falling off, parts of me belong to this huge sometimes silent country, no matter how I look I am (genetically and deeply) one of the people who most of the world doesn't want to exist--it's this huge, almost spiritual thing.

It's so weird when people will kindly try to tell you, more or less, that you've escaped and you shouldn't use that word. Because Jesus, so much of what my brain feels and does is so terrible, but having a word for it and having a home is the most beautiful thing.

late night germs

I got this weird comment on a really old YouTube video called "More about Asperger's and looking normal." Sometimes I get comments where I think English isn't their first language, or maybe it's just related to their disability, but either way the person seems to just be responding to things like the title of the video or some random word mentioned in the video, and just saying how they feel about that thing. I certainly don't mind this or anything, it's a lot less annoying than people who will do shit like getting in an argument with me over whether I really have ASD, based on some line that they willfully misinterpreted in the video.

Anyway, this video is actually just documenting the beginning of my realization that I didn't need to try to play a role to cover for being different, and explaining that I had come to this conclusion by meeting people with severe disabilities and realizing that a lot of them they were pretty cool, and if the scariest thing I could think of was that I might look sort of like them if I wasn't careful, I had a pretty good life.

But this guy's comment is about how he has Asperger's and he looks normal and he wants to date a girl with Asperger's who is pretty and looks normal. When I saw this comment and saw what the word normal meant to this guy--obviously something very innocent, unless I misread it--I felt like maybe I overdo the whole "I don't look normal and I don't want to look normal" thing. Because for some people normal just kind of means good or whatever. Sometimes I even use it that way. ("I'm sorry I'm being so annoying." "No, you're totally normal.")

But I really don't like to be told I look normal. Is that normal?

I think for me being told I look normal is like--well, it's not good because it feels like I'm not being given any space. Like just because I look a certain way to you right now doesn't mean I always will. Maybe someday I will look less normal. I want room to react and move the way that feels right. This means that for me it's nice to think of myself as "looking disabled." This doesn't mean that I have to always or even sometimes look like someone that other people can easily recognize as disabled. I'm disabled so by definition I look disabled, since I look like myself. If I think of myself as "looking normal," then it's only sometimes true. Or it's a feeling instead of just being.

Finding it (well, sort of)

So I've read the piece Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help (which is a really great piece about how inclusion doesn't work if you always put the non-disabled students in the position of giving charity to disabled students, because they can't develop real friendships) and I realized maybe I should actually go to the domain it's at and see what kind of website it is. It's pretty great! It's a guy with CP and his wife, who do training and speaking about including people with disabilities at school work etc. And some other stuff.

So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.

But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.

For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)

Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.

I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.

When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.

Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).

To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."

I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.

And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.

7. Break for love

While writing the last post, I felt required to say this.

I know that when I've talked about this before I've been disrespectful to people who identify as socially impaired and I'm afraid of being that way again. And I'm also afraid that bringing up the whole love thing will sound like a cop-out--"you can't disagree with me or be offended if you feel like I'm erasing your experiences, because I'm only saying this because I love you so much."

So I mean, you can still be mad at me, okay.

But I love a lot of people who have autism, and autism-ish things. And I've experienced so much connection and affection and support and sensitivity, with/from these people. This is why I am so upset about the pop-culture-and-even-a-lot-of-professionals concept of people with autism as lacking love, or not knowing how other people are feeling or how to support other people, or not knowing how to connect with other people--because who the fuck has been supporting me and connecting with me, Nailbunny? And I'm really really upset about the medical model, "the person is the problem" way of looking at weird and/or disabled people who are bullied or isolated. Because I love people who were/are bullied or isolated, and it's fucking damaged them, and they didn't and don't deserve to have that happen to them.

I mean, I like arguments. And sure I'm defending myself too. But I think this is a project that comes out of love and the rage that comes from love.

Reality testing

Last spring, depersonalization was kind of a political act. I'll go more into detail another time. Stuff is a lot better now for various reasons. And I know disability-as-metaphor is dangerous, but it is my disability and my metaphor.

If I'm disabled, and I know I am, and people don't know that and people don't see that, then what I think I know is not real.

If people with disabilities are real and vibrant people, and I know them, and people think of us something other, something sad and tragic, then what I think I know is not real.

If writing here and meeting people through this is a really important, special thing that's changed my life, but no one can see it when they look at me and people think the Internet isn't real life, then what I think I know is not real.

If I need help but I don't look like I need help and I half the time think I'm lying and exaggerating about needing help, and I don't have current documentation to prove I need help, then what I think I know is not real.

If people who say they are my friends, family members who say they love me, can explain without feeling concerned why they wouldn't (or didn't) want a disabled child, why it's okay to talk about disabled people in negative sweeping terms, and these people love me, and I'm still me, then I'm not me, and what I think I know is not real.

So then why is it wrong to sometimes feel like there is no difference between me and characters on TV? Or like my friends are not really my friends, but just a bunch of fake memories imprinted on my brain, leaving me nervous to talk to them because I feel like it's the first time, the first real time, like I'm a clone that has slipped into Amanda's life and is trying to proceed as normal?

I mean, if all this is true, I could be a Cylon.

(I'm making a pun, reality testing remains intact--at least as far as I know.)

take one

I have been thinking about the interesting fact that I am now as developmentally disabled as I'm ever going to be unless I get hit by a car in the next three weeks. Which is to say, people who receive brain injuries before the age of 22 have those injuries classified as a developmental disability. Since I found this out a few years ago, I have occasionally thought about it because I often get confused when I am driving and crossing the street. It would just take a minute and then I'd have two developmental disabilities instead of one.

I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."

I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.

But sometimes I do.

***

I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.

So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.

If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?

I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.

I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).

Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.

When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.

I am not working with those people. I do not look like them. I will do anything not to look like them.

In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.

***

To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.

I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.

I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."

I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.

***

I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.

I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.

I refuse to feel bad

As Pete Campbell once said, "I refuse to feel bad." What an awesome thing to say! I love Pete Campbell! However, I guess he kind of should have felt bad, right, in that specific situation. Right? I still don't know what we were supposed to think.

The act of refusing to feel bad is very powerful. Especially for me.

I think this is partly the case because I sometimes feel bad about things that other people don't feel bad about, and vice versa. So forcing myself to feel bad because I know that someone else feels bad, combined with a reluctance to express that I feel bad, becomes a way of denying my own experience.

It is also the case that I grew up with someone who, to put it mildly, had a lot of feelings. By the time I officially decided this wasn't my fault, I was old enough to vote and almost old enough to buy alcohol. Obviously I cry, and sometimes people I love cry and my reaction isn't defensiveness. However, there is a certain type of angry crying which I've now come to see as a weapon, and when someone starts angry-crying at me, it makes me want to disengage as fast as I can from what is going on.

This is very mixed up in politics with me because I think a lot of opposition to disability rights/anti-ableism is expressed in the form of angry crying, or something that looks pretty similar. "Shut up! Disability is so horrible! It doesn't matter if you're disabled and I'm not, you should listen to me because I'm crying!" (Sorry to be such a bitch, but admit it: you know what I mean.)

Refusing to feel bad can go hand in hand with trying to feel good. An example of this is meeting someone with a quote unquote "significant" disability and actually getting to know them and see how they feel about things. Getting to know someone is a lot of fun and I would absolutely recommend it every time over reading a parent or professional's negative description of what a disability is like. Even in cases where the person is in tremendous pain, their life will still be more complicated than "this disability is bad and you should feel bad."

The problem though is that it's not that easy for me to say, "Well, I don't feel bad about disability (mine or someone else's), and if someone else thinks I should, then fuck them," because, you know, some people who think I should are people in my quote unquote real life, like family members and friends. And since I've started refusing to feel bad (a condition which developed between the ages of twenty and twenty-one-and-a-half, more or less), I have made people angry-cry by telling them that I think they're being offensive and that they're hurting my feelings (often about disability stuff, but sometimes about other stuff).

At this point, I sort of start to get bogged down, because I know that writing this blog is kind of a special interest. Even though some stuff that I write here is about my and other people's experiences, in a straightforward way, lots of other posts just consist of me poring over pop culture or really tiny inconsistencies in language and identity preferences and blah blah blah. And I haven't always been into this stuff.

So I mean--should I be able to separate the part of me that wants to say these things from the part of me that is close with those people? It's weird because I haven't always wanted to say these things, or felt able to say them, and also because if I have a history with someone that involves fuckups on both our parts (more mine, for sure, with some of the people in question) it's not a situation where I can just be like "oh they suck, they're just refusing to acknowledge their privilege. This is boring, I give up." They don't suck--they're a real person.

Maybe I suck.

Maybe I'm just being an asshole and this is just like getting in a fight with someone and making them cry because they don't like a TV show that I really like. Is it like that? I don't think it is. At the same time, when it comes down to it I often don't refuse to feel bad. I often feel really bad. But intellectually, I still don't think I was wrong, but I feel like I would be a bad person if I didn't pretend to think I was wrong so the other person wouldn't be upset anymore.

And so on and such forth.

love post

Our growing and shrinking island

I got weirdly depressed because my friend was talking positively about the head of disability services at our school, who I sort of loathe. (Way out of proportion to what she actually did to me, which was three years ago, but it just was really bad, and I've gotten the impression that she is really great to students with Real Disabilities and not so good to students with Fake Disabilities--to put it bluntly.) The stuff my friend was saying wasn't really different from what I'd expect for her; the two of them had basically been talking about physical accessibility issues and how they suck at school, and how it's even harder now to get the administration to make things accessible because the two students who were full-time wheelchair users graduated and can no longer be invoked as an obvious example of how shitty things are. And she (the head) has now made the administration promise to clean up ice and snow which my friend is really happy about because he had a lot of trouble getting around last winter. (He's ambulatory but has balance problems.)

I think I'm not good at holding two conflicting ideas at the same time, though. So knowing that she works really hard to make school more accessible for kids with mobility disabilities (which it is admittedly not at ALL) makes me feel bad about the fact that I resent her a lot. I also feel bad about the fact that I'm so into "disability stuff" but I didn't even think about the fact that ice would be a problem for my friend. I think that partly because we're going through the MR-->ID shift right now, and also because there are so many annoying euphemisms like "special needs," "developmental delay," "Down syndrome" (used to mean all ID), and "developmental disability" (used to mean only ID), I have a really bad habit of using the word "disabled" when I'm talking about the issues I am especially interested and entrenched in--the issues of people with intellectual disabilities and autism spectrum disorders.

I don't feel good about doing that because I feel like that's exactly what people with physical disabilities sometimes do to us. And it's what some people who identify as allies of disabled people, like the head of disability services, do as well. (In fact I wonder if it's non-disabled allies more than people with Real Disabilities who have such a sense of what a Real Disability is.)

The first time I went on FWD/Forward, I remember being surprised when I read the contributors' descriptions of themselves. Mental illnesses weren't disabilities! Physical disabilities that were invisible weren't disabilities! How could this website be called Feminists with Disabilities, when most of these people weren't Really Disabled? My confusion soon turned into excitement and happiness as I started to feel like maybe, just maybe, I didn't have to apologize four hundred billion times for identifying as disabled. I've really been changed by the disability blogosphere, because I now see issues of ableism, disability, and accessibility as being much bigger and broader and more complex than I thought they were. I know this sounds depressing, but it really isn't, because I can see that many things that I once thought were Problems With No Name are actually related to disability.

However, I guess I also worry that as the definition of "disabled" becomes more broad, there won't be enough attention paid to the needs of people who use wheelchairs. I mean, it makes me really frustrated that I have to depend on my professors' goodwill in order to be successful*, and that I feel like I have nowhere to turn if I have a professor who dislikes me or judges my work harshly because of things related to my disability. At the same time if I do poorly in a class it's not the end of the world. And an infinite number of nice professors can't make campus better for a student who uses a wheelchair. It just completely sucks. I can sort of scrape by in a lot of ways because my impairments clash with people not buildings.

[*I would never, ever go through the disability services office because I know it wouldn't work. On a basic level I need not to be judged for not being able to speak well or understand unspoken rules about what an assignment is supposed to be like--something I can't ask for because a professor is either the kind of person who is going to resent me, or they aren't. Last year when things were really terrible, I asked for some extensions (I've probably asked for fewer extensions than a non-disabled person in the time I've been at school) and I asked to take exams in a separate room on a computer to reduce panic/discomfort. Which is not something that's a stereotype of autism, so I don't think the disability office would support me in asking for that if a professor refused to give it to me.]

I think I just feel guilty sometimes for being so angry about being erased from the mainstream understanding of the word disability. It's funny because to the extent that there is disability stuff at my school, I feel totally erased by that too because it's mainly people with specific learning disabilities. I just go through life feeling there are many things that I'll never be able to do, and I think that something like dyslexia or dyscalculia can shut down certain parts of the world, but sometimes I feel like there's such a small area that I can actually safely move around in and aim for. So I totally find myself mumbling to myself, too, "yeah, come back when you have a Real Disability." Except. You know. Is that ever valid?