the split

Clayton and I talked about how he got really upset when I said that I hate men.

1. he said that he was partly upset because when I said I hated men he assumed I didn’t include him and he feels like people have always not counted him as a man because of his disability
2. also that it just hurt

I tried to talk about “the split” which is really what I am thinking of when I say I hate men. It is just a feeling of parts of you being in a really deep opposition to each other. For example on Saturday a really kind and friendly bad brains man (about twice my age) sat next to me on the bus and I loved that we talked and it made my whole day better but:

1. he asked me if he could sit next to me and I basically couldn’t say no
2. he kept referring to my looks
3. he made me take off my sunglasses so he could look at my eyes
4. he asked me if I had a boyfriend

This didn’t really bother me because he wasn’t trying to pressure me into giving him information so he could contact me. It didn’t feel the same as that. But it is an example of how I hate men anyway. Why did he feel like that was okay? Why was it so normal that I didn’t even feel bothered by any of it?

This is the split and it’s hard to tell how I feel about it because I want to treat everyone with charity and lovingkindness and be interested in people even if they do something I don’t agree with, even if they do something I think is terrible.

But sometimes I wonder what is me being charitable and what is me being railroaded and just putting up with people’s privilege.

In high school my best friend was this really sweet lovely kid who was also such a straight guy. He didn’t treat me bad for being gay like the other straight guys but he still said ridiculous stuff like that he thought people were just pretending to be gay for attention. I loved this boy and something I love about myself is that I am a person who could love him even though he did stuff like that.

But damn there is something a little strange in it and I occasionally get spitting mad when it occurs to me how calm I am.

Recently I said something horrible to a friend from a minority group I’m not part of. There are a lot of things wrong with what I said but the worst thing is that I didn’t feel instinctively that it was wrong the way I would if it was something that was hurtful to me. So she had to explain to me how bad it was.

She wasn’t mad. She was really sweet about it, and in her calmness, I’m guessing, was the split between her and me.

Annie

(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.

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.

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."

AGGHHH

So, I really want this job. It's at a camp in Vermont for people with disabilities (mostly DDs but other stuff too).

I am worried because I feel that things are never easy, but the assistant camp director sounds like Laura Roslin on the phone, so my interview was strangely calming. Also, usually I am afraid of giving the wrong answer, but I basically have a lot of sincere feelings about this stuff, so it wasn't very hard. I said that my hero was Harriet McBryde Johnson and I thought my strength was enthusiasm and my weakness was I don't have much experience dressing people or giving them showers. I said that I feel uncomfortable about giving people showers, but that if someone is used to getting help with that stuff, that would probably help me feel more comfortable, when I saw that the other person wasn't awkward or mad at me. She said that's probably true, and that it's natural to be uncomfortable with that stuff.

Job interviews are scary, because thanks to past experience, I feel concerned that a place I'm applying to work at is less ethical than I am. I'm not too good a person to work at an unethical place because I feel like at least I'll only do the bare minimum of unethical stuff, and once I have job experience I can become a big shot and revolutionize the system. So, I feel like I shouldn't be too noisy about my convictions.

This place seems really good though! She asked what I would do if someone wouldn't get dressed and go to breakfast, and I was really afraid that I was supposed to say that I would grab them and pull them to breakfast, or something. Instead I said that I would try to talk to them about how they might regret not going to breakfast, and how if they don't go to breakfast they might miss out on other activities later in the day. AND THIS WAS TREATED AS A GOOD ANSWER!! I was so relieved.

Also, it was just really emotional to hear about all the stuff they do, how they have all kinds of different activities and special events, because when I was visiting Clayton he told me how he went to disabled camp when he was a kid and it was basically like a warehouse, they sat around and the kids who could walk were sometimes taken for a walk, and that was it. This camp has as many activities as any other camp, if not more.

I was supposed to think it over and call her back. The problem is I had nothing to think over. I was supposed to talk to people so I talked to Noah and my mom, but all I really said was "THIS IS THE BEST CAMP, do you think I should be worried about giving people showers" and they were like "not really." So, after waiting the minimum suggested amount of time (she said two to three days) I called her back and as soon as she answered the phone I said "This is Amanda Forest Vivian [I love how I think putting a random word in the middle of my name will keep people from stalking me on the Internet], I really want to work at Camp ____, it wasn't a difficult decision, so I don't know how well I can explain my thought process, do you want me to try to explain."

Then I heard some coughing. She has a cold, as I learned when I talked to her before. Then she said, "You caught me off guard. Well, you considered it briefly, and I think if people really want to be doing this, they usually are sure about it fairly soon; I try to describe a lot about the camp when I talk to people, and if they seem to be hesitating, then those are usually the people who change their minds. So I'll check your references, and if nothing horrible turns up, you should be getting a contract in a few weeks."

I started to get seized with paranoia that my references secretly hate me and/or don't remember me, because I haven't worked with DD people in a while. It's too bad that the DD people can't give the references, because I think my friend Mike would remember me and give a really good reference, as long as he could communicate by stimming. (His verbal reference would probably be something like "Hi...blue...toast...BABIES!" One time I saw a woman with a baby walking by and basically forced her to come over and show the baby to Mike. All Mike has ever wanted to do is look at babies and talk to them, but unfortunately there are no babies in the South Group Home or the Oberlin Work Activity Center. However, he can carry pictures of them around.)

But anyway, I started emailing my references to remind them of who I am. But it took me like two hours because I kept accidentally flicking my wrists and jumping around the room, like Mike does when he encounters babies, police officers, mailmen, and flyers. I mean, Mike would never flick his wrists at a baby. Around babies, he finally becomes still. I hope nothing horrible turns up because if I get this job, I will have the best summer, and my life will more or less be on track FOREVER.

eta: oh oh oh, also the DSM? Best day ever. Except, I already heard two dumb comments about it today. You guys, if part of your Asperger's identity is thinking that Einstein had Asperger's, YOU'RE DOING IT WRONG. He had a speech delay. This is a good example of how Asperger's ISN'T REAL AND MAKES NO SENSE.

The gift

I need to expand this later. But today the Rapid Transit line from Tower City to the Cleveland Airport broke down, and as I was finding my way to the shuttle they'd arranged to take people to the airport instead, a guy started talking to me. He was about twice my age and I figured it was a situation that could be read as creepy, but I don't mind talking to people, and we were in a public place, so I kept talking to him. The bus was very slow so we ended up talking for, I think, at least an hour. Or maybe it just felt like that because we got so deep in so fast.

His name is Seth and he told me about his life, his different jobs and the places he lived. His whole family are writers, except him; he wants to open a machine shop. He used to live in Ann Arbor but he moved to Cleveland because it's cheap and because he thinks he has more chance of having a successful machine shop. He's also writing a screenplay. It sounds good.

Mostly he told me about Thomas Merton, a Catholic monk who wrote books in the forties through sixties. He told me about Thomas Merton's struggles with the abbot who was trying to control him, and his love life, the tragedy of it. Seth was serious and delighted. It was incredibly interesting. I felt so lucky.

So, what am I trying to say. I'm trying to say that many women (including me, especially me) think that eating a bag of Doritos is morally wrong. And I'm trying to say that I think being socially naive, being less than canny, being massively interested, finding myself overflowing, is morally wrong.

I spent four days with my friend Clayton. We stayed up late and talked about everything. I asked Clayton if he thinks my ASD is Real, Clayton said he could tell when he met me that I was making an effort to appear in a certain way. For some reason, this is one of the nicest things I've ever heard. What if I just don't pass? If I just don't pass, I can get on with the business of living. If I'm always going to be Odd, I can apply myself to working on my love.

Seth gave me a gift by telling me wonderful things. And by making me realize that apathy is never a virtue even if it is normal. And Clayton is a gift, because he's full of love, and as we were falling asleep I said, "Clayton, I just...I just want to be a smart, nice, interesting person...that's all I want...that's all I want people to think I am."

I'm not working on the other stuff anymore.

Space auties

My friend Clayton was telling me how he plays a video game where some of the characters are "basically autistic people on four legs." Then he kept saying "Amanda, I have to show you the SPACE AUTIES on YouTube!"



I think he's possibly better at fictional diagnostics than I am.

Two kinds

Do you agree that there are two kinds of disabled people--people who are visibly disabled, and as a result tend have people overestimate their disability, so that they really desperately want people to be less likely to express sympathy for them and offer to do things for them; and people who are invisibly disabled, and have people constantly tell them to apply themselves and tough it out, and therefore really really enjoy it when someone tries to help them, even clumsily?

I find this idea impossible not to think about, just because of the symmetry. This is probably Like a Person Part Four I guess, but whatever. And also, disclaimer, there aren't really only two kinds, it's just that I am talking about two groups of disabled people, but there are other disabled people who aren't in either group, I'm sure.

I feel like--and not to be a dick, my parents are really nice and everything, but anyway--my parents have always made me be both kinds of people at once, meaning that they'd do lots of things for me that I had trouble doing, but they'd never stop reminding me that I should be doing those things, and it was really bad that I wasn't doing them. They did things like making a point of having me go and order food at McDonald's when I was a kid, because they knew that it was hard for me. So even when I was actually doing the things, I didn't feel normal, because it was A Lesson. I'm probably not being coherent. I don't have much time to write this.

Pretty much my only disabled friend (I have some friends who have mental illnesses but don't identify as disabled) is physically disabled, and he is super spoiled just like I am, rarely has a job, executive function skills are possibly worse than mine are, just learned to drive at age 21, last year his roommate would sometimes come up to me and say, "Can you please get FFD to put a sheet on his bed because he's sleeping on a mattress and it's grossing me out?" At the end of first year, his mom told him not to pack or clean his room, he'd worked hard enough, she would do it.

My parents got to school at the end of first year, and I wasn't done packing--I had taken all the paper off my walls, which you can imagine took a long time, and packed some clothes, but my room was very cluttered, when they came in. So my mom had a very negative reaction about how I was disorganized and hadn't done anything.

I'm kind of rambling and maybe shouldn't be posting this because it might be a gender thing instead of a visible/invisible disability thing, or just something completely different. I do think it's interesting, though.

Anyway, when my friend was in school, he was mostly in mainstream school, but at camp, and as a little kid, he was with kids who had severe intellectual and physical disabilities. He has this thing about how teachers would always tie his shoes for him instead of letting him do it, because it took him longer. Also when he was a kid he sometimes fell down and some bystander would make a production out of it even though he was obviously all right.

My teachers basically thought I was a major bitch and in fifth grade my teacher took me on as a project and forced eye contact on me while telling me how self-centered and arrogant I was until I started crying. She would also take books away from me to train me to talk to other kids, etc. etc. and basically snap at me if I said something she considered impossible, like, "I can't tell if I'm joking with someone or bullying them."

So, if a friend and I go to a movie theater or something like that, and my friend automatically does the talking for me, or if a friend brings me along to her boyfriend's house where there are a lot of people, and talks to her boyfriend in an attempt to find out if I could go play with his guitar, this is something that I find hugely touching and wonderful. Whereas, if I get up to plug in FFD's computer, or bring him his shoes or something, it makes him annoyed.

(I should give myself more time to write things, sorry; am I saying anything interesting?)

Why I don't like ASD memoirs, and other stuff

Someone sent me Tim Page's piece about having Asperger's in the New Yorker. I read all of it and it kept my interest on one level but at the same time it was really, really boring. It's funny that I should say this when my blog is so incredibly self-centered, but it was too self-centered for me. I should mention, I'm sure Tim Page is a really nice person and all, I just don't like this genre of ASD memoirs or maybe I just don't like ASD memoirs.

I don't see the point of writing a piece (and now I guess a book) that just seems to be a list of all the weird things you did when you were a kid. Is that weird of me? It's funny because I write so much about having ASD, and when I write fiction it's always about people who are off in some way or another, so it's not like I'm avoiding the subjects of ASD or weirdness. But when I write stories I guess I'm trying to wrangle some kind of beauty out of weirdness or find new things to say about it. And when I write stuff about ASD I am interested in either expressing my opinions about disability or talking about ways to deal with specific impairments. I guess the Tim Page stuff bores me because I feel like there's no movement in it.

As I say about a thousand times a day, my favorite book about ASD and possibly my favorite book ever is Send in the Idiots by Kamran Nazeer. I guess it's technically an ASD memoir, but what's the difference between it and this? I think I like Send in the Idiots because it is about functioning. Some of the subjects of the book are "lower-functioning" than Tim Page, but while Page focuses on all the stuff he did wrong while he was growing up, Nazeer talks about how he, his friends, and their families find ways of getting around what's hard for them. One of his subjects committed suicide, but Nazeer tells us how she taught herself to ride a bike when her parents were at work, to surprise them, and how she learned to read a bus map through trial and error.

Also, when Nazeer talks about how people made fun of Elizabeth at the mall or Randall's boyfriend didn't respect him, I don't get the impression he thinks That's Just How It Is For People Like Us. He says he wanted to kick Randall's boyfriend in the shins. Nazeer launches into long, beautifully pedantic explorations of what a conversation is (with the implication that ASD people are missing out), but he also beautifully, pedantically explores what a dick Randall's boyfriend is for treating Randall like an okapi instead of a person.



completely unnecessary visual aid because okapis are rad-looking

Nazeer's book doesn't focus on his experience like Page's New Yorker piece does, but I don't think that's really the big difference. I think it's just old social model vs. medical model, after all. And that is an inaccurate way of talking about it because medical model means freaking out about how bad a disability is. But I think freaking out about how interesting a disability is, if less dangerous, can be just as annoying to read. I don't feel like looking at one person by themself. I would like to hear some opinions, about goodness or life or love or something. Page's piece is informative if you don't know anything about AS but Send in the Idiots altered my brain. I reread it at least once a year, I love moving my mind through those beautiful squares, if a book can be a home it is my home. It changed what I wanted to do with my life. And also, what I thought my life was.

I never had a blog with tags before and sometimes I get carried away. I like "kartheiser is magic" and I got excited when I realized I kept posting about The Sound and the Fury so I could make a "faulkner" tag. But my favorite tag is "how to be human" and I don't know exactly what it means but all of my posts that I think are worth reading are tagged "how to be human." Sometimes they're about how I try to work around certain aspects of ASD, sometimes they're about things that I think are ableist, and sometimes they are just about my attempt to figure out and implement a moral course of action in some situation. I guess I think those are the interesting things about ASD and ASD in the middle of nowhere is kind of boring. If a disabled person lives in the middle of a forest they're not even disabled, unless the trees think they're a disabled version of a tree.

In conclusion I will just tell you something that's only mildly related and maybe it isn't clear why I think it is. Today when I was walking back from my horrible exam, I thought about how I would visit my friend in his room last year and the year before that. Often he was asleep or not there and I would feel like a creepy stalker; many people have that effect on me, but him more than anyone else, because I just long for him like I long for Send in the Idiots and the particular kind of sneakers I have gone through ten pairs of. Anyway, when he was there, sometimes he was doing physical therapy exercises with his jars of putty. He had all these jars of putty that were different colors and the different colors indicated that the putty had a different consistency and was appropriate for a different time, or different exercises, or something. All I know is that I would sometimes start playing with the putty without thinking about it, and my friend would get mad.

When I came by and my friend was doing his exercises, he would often be watching anime on his computer and he'd always be embarrassed about it. It was always really bad anime about ghost hunters or something, and my friend is kind of a snob, but sometimes he wouldn't be too embarrassed to let me lie down or sit down and watch anime with him. He'd try to explain the plots to me, sometimes.

Then sometimes my friend would go to the vending machine. When he walked around school, he would always sing. His voice has a crystalline quality and he always sang folk songs and show tunes with the result that the words, slightly smudged, ended up sounding ghostly and sweet as he moved through the halls. On his computer, checking Facebook, I'd know my friend was coming back when I heard the heavy uneven sound of his steps trudging under the clean white verse.

can a visible disability be an invisible disability?

I'm just noodling to avoid writing my paper but one thing: a post about my fake friend David, who has cerebral palsy. Actually he is a real person but I am just pretending his name is David because I feel like I'm spewing his personal information all over the Internet. Except, anyone who even goes to my school will probably know who I'm talking about, so maybe this is a lost cause and I just have to hope no one from my school reads this. SORRY DAVID (can you forgive me since I named you after your favorite person?).

Cerebral palsy is not considered an invisible disability. However when people meet David they don't necessarily immediately understand why he moves differently. Our friend Liz thought he was drunk. I somehow expected David to be "off" socially or mentally (which I know is really fucked up, but in the interest of total honesty; on the plus side, it's probably why we're friends, because I was less shy around him than I was around other people). A few weeks into our first year of college, I remember telling someone how much I liked David. "Is that the awkward guy?" the person asked.

"Well, he's disabled. He limps," I said.

"Yeah, him, he moves kind of awkwardly."

I thought this was a strange way to describe someone who limps. "Awkward" is the way I would describe someone who seems really shy or says socially inappropriate things, not someone who is physically disabled. (I don't remember verbatim what was said, so it may not be clear, but it definitely was clear at the time that the person was using "awkward" as a physical descriptor.) Later I mentioned this to my dad, and my dad said the person was being tactful. I think this is weird too, because "awkward" seems like a worse thing to say. It seems to imply something negative, while saying that someone limps is just a fact. And "awkward" sounds like it's about David's personality.

I don't think it is tactful or polite to describe someone's body using a word that sounds like it is describing their mind. People tend to treat David as otherworldly, and although this is partly because of his personality (he can be very enthusiastic and guileless about things), I suspect it's also because he moves differently. I would guess it's different when he uses a cane and I would guess it would be different if he used a wheelchair. But because there's usually not this giant object broadcasting "physical disability," I feel like people read his CP as body language.

One example of what I'm talking about is the fact that I assumed he had some sort of social or intellectual issue. Obviously I soon found out this was stupid, and will never react to a physically disabled person that way again, but I still can't pin down why I reacted like that in the first place. Another example is that people tend to assume he's asexual and even act sort of disturbed when they find out he's not. I've sometimes gotten the impression from girls he's been interested in that they think it's somehow unseemly for him to be interested in them. But I don't think that anyone is sincerely thinking, "DISABLED PEOPLE SHOULDN'T HAVE RELATIONSHIPS," they're just thinking "...but it's David." Which, okay--but why is it David?

The only 100% for sure example of people equating David's physicality with his brain is the time a professor contacted the disability office because she thought that David talked too much in class. This is straightforwardly ridiculous and offensive. But I can't help but wonder if this whole implication that David is special/asexual/"awkward" comes in part from his disability. And I don't think people think about it. I think they would think, consciously, that it's awful to think about someone with a disability that way. But because David looks different without looking stereotypically disabled like he would if he was in a wheelchair, I think it is likely that people react to him with unconscious ableism.

I think this is an example of a supposedly visible disability actually being an invisible disability. And I think what this means is that the disability is just taken as part of the person's personality or essence, and not consciously recognized as a disability. I'm hard pressed to say this is always a bad thing; I certainly wouldn't like someone to behave as if my disability is something separate from me. But I think most people with physical disabilities do want to be separated, and I know that David does. Sorry I'm rambling and not really making a point. I just think it's interesting. If I was any good at being in school, I would want to write a thesis on the way the average person reads other people as disabled and how they conceptualize that.

Kinds of Autism, part two

Of course, I haven’t always been ≤1, but it’s hard to really use these terms when you’re talking about kids--because for example it is not considered appropriate for an 8-year-old to walk around a city alone, so by my rubric all 8-year-olds must be at least 2. I think that I became ≤1 at a later age than the average person. But I was mostly around 1, with occasional rises to 2, when I was in my early teens; then I started working hard at about 16 and I dropped myself to .7, which I would describe as a very conscious act of charming daffiness. I guess I should say, I don’t think anything under 1 really exists; I’m not sure that anything under 1 can be someone’s true self. But you can keep it up for a long time. I do. Actually, I’m not .5 at my regular college because everyone is so weird there and everyone knows each other, so I get to sort of flip around from 1 to .5 and sometimes even get higher than 1 when I need to. I miss it there so much.

Usually I do not get to anywhere near like 2, but I can remember a time since I’ve been in college when I got there. I had a really stressful summer after first year, and when I was at the Holiday Inn with my parents on the way back to school, I realized that one of my best school friends CK was at the same Holiday Inn. So we wandered through the halls talking on the phone until we found each other. I have very strong feelings about CK and I was so overwhelmed to be near him that I couldn’t even look at him. I think I might have put something over my face while I tried to get used to him being there. Then his mom and sister came in and asked if I wanted to go to dinner with them. I didn’t think that I could do the things you’re supposed to do when you go to dinner with your friend’s parents, but I didn’t want to stop being near CK, either, so, I went.

In the car, I think I sat next to CK and probably held hands with him, and did a kind of talking that is like holding hands--like, inside jokes, things without a lot of content. Maybe I expressed that I could not really talk. At the restaurant, I sat curled up next to CK and he touched my hair and talked to his mom and sister, and after I got more able to communicate, he helped introduce topics that I could talk about, like telling funny stories about me that I could elaborate on. By the time dinner was half over, I was back down to at least 1.

But this doesn’t happen very much, so does this mean I’m high-functioning? Hardly. It’s not an accident that the lower numbers get the more my definition of them becomes about what a person looks like when they are outside. One reason I am .5 in Edinburgh is that I spend a lot of time in my room playing Solitaire, jumping all over the place, and staring at walls. Also, I think I might fail some of my classes because I am not good at planning, and the nature of being at a big university in a big city is that no one is checking in with me or helping me plan. My number chart is mostly about how well you function in society, it’s not really about how you function in any other way.

At college, even though I am like a 1.2-.7 depending on the context, I would describe myself as high-functioning because I have a pretty easy time making and keeping friends, doing schoolwork, and basically looking after myself. None of those things are true here so I am not really as high-functioning here even though I look more normal. Also, there is a kid at my school who is at least 1.3 all the time, even with strangers, and he’s really popular and involved in all kinds of things and seems really happy; he’s at least as high-functioning as I am if not more so.

When I watched Autism is a World, I remember thinking that if I had aides who kept me from getting into stimmy states when I need to do homework, I’d have an A- average too. I don’t see how Sue Rubin is lower-functioning than me across the board when she has enough support to do better in college than I have ever done. This isn’t saying that I would rather be Sue Rubin than myself; if I understand her correctly, I think she is pretty unhappy about the fact that, as a 2 person, she will always be perceived as disabled by other people and frequently have them treat her differently, even insultingly, because of that; and that she has to rely on other people’s help to communicate. I am really glad that that isn’t my situation, because even though 2 is maybe not objectively worse than being ≤2, we live in a society where it’s a lot worse. But I’m just saying, looking normal is not high-functioning.

I went to high school with a boy whose brother is autistic and whose parents are involved with Autism Speaks. A while ago, my mom contacted his mom to see if she could help me figure out how to get a job babysitting a kid with autism, or something like that. My mom mentioned to the other mom that I had AS, and reported back to me, “She said, ‘I would never have guessed that Amanda had anything.’”

I am absolutely sure that this was meant as a compliment and not in a critical way, but my response is: number one, I don’t even remember meeting you, so how would you even get enough of an impression of me to guess? And number two, when you met me, I did not have any friends, which I think is a pretty good indication that something was wrong with me socially. It’s true, even if you asked your son, who I knew to say hello to but not any better than that, he might say that I didn’t seem to have anything either. It’s not like he was cataloguing whether I had any friends. I’m sure many people who knew me to say hello to were not consciously aware that I didn’t have any friends. So, awesome, there I was at .7, looking normal, earning pending compliments for my mom--but I wouldn’t say that I was high-functioning. What does that even mean if a person with no friends can be high-functioning?