Our shrinking island

I

Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.

Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?

I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.

I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.

II

Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.

I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."

Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.

(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)

III

I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.

I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.

This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.

I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.

Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.

surreptitiously left on a desk in Joe's classroom

Dear Cheryl (and the rest of Class Four),

Thank you a lot for letting me visit your class and be a part of Circle Time! Also, thank you for giving me the bag last week. I especially like the class picture, because I am in the middle of finals and I'm really stressed out, but when I look at the picture of Class Four it puts me in a better mood. Coming here has been one of the best parts of my week.

I have a question about Joe. I was wondering what you guys do when Joe expresses that he wants to do things. For example, the other week the kids who can walk went outside to practice for the Special Olympics, and when Joe heard the word "outside," he smiled and made a lot of noise as if he wanted to go outside. But his reaction didn't change anything and he still had to stay inside.

I'm worried because Joe seems so low-key, and I'm afraid that if no one reacts when he does express himself, he will just give up and think it isn't worth it. Of course I only see a small part of the school week, so I might have a wrong impression. But I got this impression a few times and I can't help worrying because I like Joe so much.

Sincerely,
Amanda

What is severe? (an experiment)

To be honest, my classmate's use of "severely disabled" to describe her sister kind of pisses me off. It reminds me of my feelings about certain autism rhetoric--about autism being The Worst Disability and nonverbal ASD people being "locked inside." I mean, I've been spending time with kids who have multiple disabilities (well in some cases I wonder if it's "they can't talk because of physical disability and we're not creative enough to figure out AAC, so we're going to diagnose them with intellectual disability"--but whatever). Scenes in the story involve my classmate's sister using language communicatively, kicking my classmate, and wandering off and getting lost. Joe can't do any of those things. He can make noises to get people's attention, and he can move around in his wheelchair or trainer--but he usually doesn't, because people often ignore his wishes no matter how clearly he expresses them. Kids like Joe are not troublesome to take care of like kids with ASD can be, because no matter how frustrated Joe gets, he can't kick anyone.

What a horrible way to use the word "severe."

Maybe I'm being nitpicky, because I can see that a possible response is, "Well, your classmate's sister has severe ASD, while Joe is severely physically disabled--the spectrums are different, so it's still okay to call them both severe--just like a severely dyslexic person is much less impaired than A. or Joe."

Okay but she used the term "severely disabled" not "severely autistic." So...wouldn't that mean she's on the severe end of all disabilities?

I don't know. Still nitpicking, I guess.

I'm not trying to set up some sort of "which disability is worse" contest. I mean, I don't know whether Joe is going around thinking, "man, I have the worst life." Probably not. He's a child. There are things going on he is interested in. Sometimes he gets to go outside, sometimes he gets to listen to music.

But I sometimes have a sense that he has mostly given up trying to express himself, and that horrifies me. When I saw my classmate call her sister "severely disabled," I was so offended it surprised me. I felt insulted on Joe's behalf. Which is maybe really weird.

In terms of me: I'm mildly ASD and mildly disabled--but I do sometimes feel pressured to say that I'm not even either of those things at all. And I think that's because I'm not troublesome. I don't do a bunch of obviously odd things. There are just a bunch of tasks most people are expected to do that are extremely difficult and tiring for me and sometimes I feel like I'm falling apart. Sometimes I feel like if I was more obviously odd, it would be easier for me to ask for help.

Would that make me more severely disabled?

JOE CUTENESSS

I'm really excited because the teacher of the class I visit gave me a class picture!!



Joe is the incredibly handsome one with the white pants. Zach is the glum one. Today Stephen (the one in the gray sweatshirt) and Anthony (the standing boy on the left) and I had a really long sensory/movement interaction...well, that's such a pretentious way to put it. We played together, in a roundabout way.

The Joe and Zach Liberation Front

So, I mentioned to LF that this kid in Joe's class, CJ, treats Joe like a toy. LF's reaction was "That's really rude of him," and I rushed to CJ's defense--I mean, I could be really inappropriate when I was a kid, and presumably CJ has some kind of DD to be in the class. (I don't know many kids so I'm bad at reading them as DD, and CJ is the only one who doesn't have a visible disability. He's also one of two kids who can talk, the other of whom is very difficult to understand.) I was sure CJ wasn't trying to be rude or patronizing, but I figured he was just kind of impaired in these areas, and hadn't been educated about what's respectful behavior toward someone who has a lot less freedom of movement than you do.

But at this point I'm just like, what the fuck. The way CJ treats Jonathan (the boy with CP) and especially Zach and Joe is not okay. Whenever people talk about students of different abilities being together, all the focus is always on the poor non-disabled or least-disabled student who is supposedly being dragged down or traumatized by the presence of more severely disabled kids. But I can't imagine what it's like for all the nonverbal kids when the teacher asks a question during circle time and CJ yells out the answer. They never even get a chance to think about it or try to show what they know.

And mostly, CJ is just really super rude.

CJ comes up to Joe, throws his arms around Joe, slaps Joe on the back a few times, and declares, "I love Joe! We're buddies!" Obviously I'm looking on doubtfully, since poor Joe has no choice but to receive this boundless affection--but CJ reassures me, "Joe loves me! We're friends."

Okay. This bugs me. I'm not trying to say that a kid like Joe is incapable of feeling or expressing love--in fact, just today he indicated to me that he loves Easter. I haven't seen that kind of quantitative proof when it comes to CJ, but Joe may well love CJ, who knows. But I just don't think it's appropriate for CJ to constantly announce that Joe loves him, when Joe isn't capable of saying, "No I don't." A kid like CJ and a kid like Joe can be friends, but I think that CJ needs to be encouraged to think about the fact that Joe can't express himself as clearly and unambiguously as CJ can, and needs a friend who is sensitive and doesn't smother him. It's easy to smother someone who can't tell you to stop, but that doesn't make it okay.

Also, CJ will grab the other kids' wheelchairs and trainers and try to push them; pick up Joe's hand and wave it for him; try to shush the other kids when they're being noisy; wait for the other kids when they're late; and other things that are not appropriate to do with people who are your own age (and, in most cases, older).

Then the Zach thing, and admittedly, this is a really biased description of what happened because CJ was getting on my nerves. As previously mentioned, Zach is a very small, very emotional teenage boy who I am inordinately fond of and who uses a trainer during gym. Zach's trainer was being used by another kid, so Zach had to use Joe's trainer from when he was younger--I know nothing about trainers, but given that Joe is not as strong or fast as Zach, I'm wondering if the trainer wasn't suited to Zach and that's why he was zooming around incredibly fast and started smashing into walls. Because eventually that's what was happening.

Zach started running the trainer over to where the ambulatory kids were playing golf (practicing for the Special Olympics, I assume). CJ kept yelling at Zach and grabbing his trainer and moving Zach away. CJ always has a smile on his face, so I don't know if he had bad intentions, but it would have really pissed me off if I was Zach. By the time I really started paying attention, Zach was crying as he again and again turned his trainer and barreled it in CJ's direction. CJ kept confronting Zach very physically and asking what was wrong with him.

I had a feeling, though I could be totally wrong, that Zach was actually trying to run CJ down with his trainer. Maybe I just wanted that to happen. However I managed to restrain myself from cheering Zach on, and pulled/encouraged him over to the steps at the side of the gym, where I could sit down and be at his eye level. He either likes me or is a pretty easy kid as soon as anyone treats him with respect; I put out my hand, we held hands, he stopped crying, I talked to him about how CJ isn't very sensitive and there's nothing we can do about it, he put out his arms and hugged me for a long time, and then we walked around as far away from CJ's corner of the gym as we possibly could--with me pretty much always holding onto Zach's hands, both because he seemed to want me to, and because he was just going so fast in the trainer it was freaking me out.

So, eventually CJ is walking around too, and CJ comes up and says very loudly into Zach's face, "You're okay? You're better?" I was kind of afraid Zach would get upset again, but he had no reaction as CJ hugged him, smacked him on the back a few times, and informed me, "Zach and I are buddies."

Yeah, okay.

I don't feel sorry for Schlitzie Surtees

I mean: I feel sorry for him because his only options in life were to be a sideshow performer or live in an institution. Even though he liked performing, it should have been a choice. But I don't feel sorry for him because he had microcephaly.

A few weeks ago, Mike D'Angelo at the Onion AV Club wrote a piece on Freaks that makes me think he didn't get much out of the movie. Basically, he says it could never be made today (why not?) and that the presence of Schlitzie and other people with disabilities "gives the film an unavoidable skeeviness." Before a clip of the "one of us" sequence, D'Angelo announces, "If you can watch this sequence without experiencing conflicting emotions, you worry me."

That's right. I have something wrong with me because I think Schlitzie, Johnny Eck, et al. are really fantastic, and don't have a problem with Tod Browning including them in a movie.

This is a placeholder for a longer post about Freaks and the general idea that it's inappropriate to be interested in and/or pleased by disabled people, especially intellectually disabled people. Apparently D'Angelo thinks that the appropriate way to treat someone like Schlitzie is to avert your eyes as fast as possible. Except, he can't do that, because Schlitzie is awesome--but he takes care to emphasize that the way he feels, and the way Browning apparently felt, is REALLY FUCKED UP AND MYSTERIOUS. It's just one of those weird fucked-up things that people feel.

But it's not fucked up at all! What's wrong with liking Schlitzie?

I'm going to quit and come back to this later, but for the time being, this is a really brilliant and beautiful post by Shiva, another ASD person who likes Freaks: Freaks, Hercules, and the Hydra.

And another thing: it's a privilege to know Joe and Zach. They are interesting kids and I feel fond of them. If I hadn't, in movies and in real life, been exposed to people with microcephaly and other different-looking disabilities, I wouldn't be able to get to know Joe and Zach the way I am; the way they look would have been a distraction, instead of just a part of who they are.

At age twelve I became terrified when I was sitting near a very different-looking, very loud disabled kid in church. My reaction to her was horror and sadness. I started crying. I don't think this says anything about unusual-looking people. I think it says something about the idea that it's inappropriate for unusual-looking people to be in public or to be portrayed in art, and how dangerous that idea is.

affectionate disability issues

The Joe and Amanda Adventure wasn't one, because Joe wasn't as smiley as last week, and the teachers said that all the kids were in a bad mood because it was the day after their field trip. Something else interesting happened, though. After circle time, the teacher dimmed the lights (which for some reason resulted in Joe yelling) and put on some quiet music and had the ambulatory kids sit on beanbags, and picked up Joe and put him on a beanbag. She laughed and said, "It's really more for my benefit than theirs."

There is a kid in the class named Zach who frequently cries and seems angry. I don't know what his disability is but it's the kind of thing where if I was more educated I'd probably be able to tell. He's very small, uses a wheelchair, and has a really small, short face and small eyes. I like Zach because he's always trying to take off his shoe so he can stim by waving his sock in front of his face. Today I think he seemed interested in my presence when I showed up in the middle of their gym class, he was kind of looking at me and clapping and stuff.

But yeah, he was making a lot of noise after the teacher had dimmed the lights, and she picked him up out of his wheelchair and put him on the floor. I couldn't tell if she did this as a punishment, or just because she thought it was more appropriate for what was supposed to be a relaxing time. I feel like if she was trying to relax him she would have put him on a beanbag. I just thought it was sort of weird.

Zach crawled over to me where I was sitting in a chair. He took hold of my arms and with my help lifted himself into a standing position. Then he sort of turned so I was holding him in my lap. I sort of hugged him, but I felt weird about it because he's fourteen. When I first met him I thought he was seven or eight at the oldest, and I wouldn't have reacted that way, but I just wasn't sure if it had different connotations given how old he is, so I sort of made him sit back down on the floor.

Then he crawled over to the other side of the room where his teacher had put his wheelchair, and I got up and went with him. Zach was sitting next to the wheelchair and touching it. He reached out to me and looked at the wheelchair. I felt really bad because it seemed like he wasn't comfortable not being in the wheelchair and was hoping that I would help him (I may be totally projecting, but I don't know why else he would crawl away to the corner of the room if not to be near his wheelchair). I quietly talked to him and told him that he couldn't go in his wheelchair yet but would probably get to be in it again after the class finished listening to music. I don't remember what else I said.

Anyway, he started kind of having me pull him into a standing position, and then he basically put his arms around me, and I was sort of holding him (I was kneeling, I think), and he had his face pretty close to mine and I think might have been trying to kiss me--I got a bit of an impression of that, at least, so I kept turning my head away.

Now that I write this out, it sounds a lot weirder than I thought it was at the time. I mean, from a little kid I wouldn't think it was weird. I also know some intellectually disabled people who are very physically affectionate with people they don't know well, and it doesn't bother me at all, I think it's awesome. But because I'm confused about what the nature of Zach's disability is, I didn't know how to react, whether to classify him as the kind of person from whom such a display would be cute.

I'm thinking about this more and thinking about what hugging and kissing means, and what it means to define someone as the kind of person from whom hugging and kissing is cute, and the kind of person from whom it's inappropriate. I'm not sure it even makes sense for me to act as if there are people who are always allowed to do it and people who always aren't. I met an intellectually disabled guy who, when meeting women who were wearing low-cut shirts, would take both their hands and shake them up and down, staring at their breasts--his way of greeting people obviously wasn't "cute," and he was rather creepily taking advantage of the fact that people were going to perceive physical contact from him as "cute" rather than as sexual. Another intellectually disabled person actually had to explain to my friend why she shouldn't let Adam shake her hand. On the other hand, I know a woman named Andrea who likes to hug and kiss people, especially people she's seen before, and it doesn't strike me as creepy. But it's theoretically possible that Andrea is doing this for sexual reasons, whether or not she's aware of it. But I just assume she's not. I'm not saying Andrea doesn't have a sex drive, but just that this particular action of hers isn't necessarily sexual, and it doesn't seem obviously sexual to me.

If a fourteen-year-old boy who didn't have a disability started hugging me and climbing up on me, I would absolutely not be okay with it. But let's say, even, that Zach has absolutely no intellectual disability at all, but just can't communicate--well, that still means he's had a hugely different life from the average boy his age. And the reason I'd be upset by the average boy his age doing that is not because I think every single thing a fourteen-year-old boy does is sexual, but because the average fourteen-year-old boy will be trained to think of that as sexual and inappropriate behavior, so if he's doing that, it's almost an act of violence and it's definitely disrespectful. I don't know if, out of that context, it is inappropriate.

And besides, my example of Adam shows that an intellectually disabled person can be creepy as fuck, so then can't the opposite also be true? Why does Zach have to be intellectually disabled for this to be okay?

I know it seems like I'm weirdly invested in arguing that it's okay for Zach to hug me. I think it's because platonic physical affection is a major part of my life and my identity. I used to call myself "heteroaffectionate," meaning I fall in love with guys (I'm not sexually attracted to guys, for those keeping track). Basically, I've had several male friends with whom I'd hold hands, spoon/sleep in the same bed, and just do sort of semi-ironic things, like kissing each other on the top of the head, being each other's Valentine, etc. And I can be really intense about these guys.

I'm not really heteroaffectionate to be honest; it's not like I actually don't have any romantic feelings for girls. That's kind of a joke. But because I don't really date, I've had to figure out that there are a lot of other ways of being close to people and caring about them, and I really don't like the idea that you can only be close to someone you're in a sexual relationship with (which is an impression I get from some straight girls I know). It's really weird for me in the early stages of friendships, sometimes, because I might not know if the guy knows I'm gay, or even if he does, I'm afraid that when I do things that are seen as too romantic, he might not know what to make of it. So I guess this is why I sort of jumped on my reaction of "oh shit, I don't know if Zach should be hugging me"--because I know from experience that lots and lots of kinds of affection are not about sex.

I mean, yeah, he may be a creeper (or an unconscious creeper, who doesn't get that he's being creepy, but is nonetheless hugging me for a sexual reason). But he also might not even like girls, or like anyone. Or maybe I'm not the kind of girl he's attracted to. There are all kinds of nonsexual reasons for Zach to try to get me to hold him--sensory needs, platonic affection, a desire to feel more high up and secure like he does in his wheelchair.

This may be an unpopular opinion, but I sometimes feel that assuming disabled people are always being sexual doesn't make any more sense than assuming that we never are.

P.S. I got to see Shawna, who is a little girl with autism and mental illness who I met two years ago, who was one of the first DD people I ever met. Well, she's not so little anymore, she's eleven, and she's really tall. She was just standing around near the gates of the gym so I went up and talked to her and put out my hand, and she held my hand and reached out and touched my collar, which I recall she does a lot. She was saying something she maybe used to say, that sounds like "walking, walking, walking" or maybe "wanting, wanting, wanting"--but after a minute one of her teachers told her to come away from the gates.

The Joe and Amanda Adventure!!

On Thursday I get to go to the special ed school and I'm in a class where they don't seem to do very much, and I know I should ask to be switched to another class where I can be more helpful, but I totally never will because I am in love.

In my class there is a boy named Joe who is eleven and has short bristly hair, a flat skull (side to side, not back to front), heavy-lidded eyes, a big nose, and not much of a chin. I keep going on the Internet and trying to figure out what disability Joe has, and how I could cause my future children to have it (kidding!) because he's soo tremendously cute. He reminds me of the puppets from Coraline. I'll stop carrying on about Joe's physical characteristics because I think I sound sort of like a Nazi doctor, but I'm just trying to say he is really cute.

So, last week my Joe infatuation began because I got to hang out with him during gym class and try to induce him to walk his walker-thing around the gym (according to Wikipedia it's called a rollator, it basically keeps him strapped in a standing position and he can stop moving and rest his head on the shelf, and it has wheels, but he pushes with his feet). I couldn't really tell if Joe was into me or not. I did see him kind of opening his big mushy mouth in what looked like a smile, so I felt hopeful, and then all week I carried on about my love for Joe until my memory of him was sort of worn away, and I was really scared of going in and having Joe not like me when I have built him up in my head as the Most Adorable.

So, when I went in Joe was right next to the door, and he was just standing there in his walker, and I crouched down to look at him, and guess who was way more friendly than last time and lifted his head up from the shelf and looked around and if I understand correctly was totally smiling and stuff and walking really fast!! I could be wrong. This requires further investigation. But I think we are friends.

P.S. During circle time the teacher talks in this really loud cheery voice and the only verbal kid is really noisy and yells out the answers, and I have a theory Joe doesn't like it because he clasps his hands together really hard and sort of punches himself in the ear. <333

P.P.S. I did some more Joe Research on the Internet and he looks like the little girl in the first two pictures on this page. It made me really sad because I guess he has lissencephaly and it seems like a lot of kids with lissencephaly die really young. I hope he doesn't have one of those kinds.

P.P.P.S. Joe's class makes me sad in general because I feel like every kid should have their own aide and get the chance to use a communication device but they only have a few aides and they don't have any communication devices. It just makes me upset because I feel like they're not getting anything done and they all look really spaced out a lot of the time.

P.P.P.P.S. Some of the kids were making trouble and the teacher said, "I think some of us aren't going to have cookies at lunch," and Joe who never makes any noise suddenly yelled "Baaaaah!" in a really angry voice and she had to be like, "Oh no Joe, not you!"

P.P.P.P.P.S. I think the difference between high-functioning autism and low-functioning autism is that people with low-functioning autism get confused as to whether the obviously computerized voices on answering machines are real.