30 May, 2010

I really want to be in Devon Sproule and Paul Curreri's marriage

(Sorry I haven't really been posting at all. I'm ruminating on something that will be epic, though.)

26 May, 2010

PSA: I suck at everything

So, recently lurker commented and asked me to explain how autism benefits me. I've never claimed that ASD benefits me, so I'm wondering why someone would ask this. Maybe they're really asking something else. But first, a rundown!

I'm Not Special, You Guys

1. ACADEMICS! I'm not failing out of college (yet) and I have an average IQ. In terms of college I succeed in spite of ASD, not because of it; I have to fight myself every step of the way to keep my head above water. And, if you were wondering, I don't do extremely well. I guess my IQ is an ASD IQ since there is a 20-to-40-point gap between my verbal and performance IQs? But it's not really an "aptitude" since it's a pretty normal IQ.

2. WRITING AND MUSIC! Admittedly I am a good singer and I'm good at writing music and prose. Part of the singing (not being tone-deaf and having a nice color) is just like being white or having long fingers. But obviously I've developed a style and I am precise and this is from intense interest and practice. My writing ability is from intensity too.

I think you could make an argument that these things come from ASD, since people with ASD are more likely to get deeply absorbed in things. I'm sort of reluctant to concede this because many people who don't have ASD can become deeply absorbed in things as well. I certainly wasn't born with writing ability the way I was born stimmy, or something like that.

3. FEELINGS! Even though I don't write because I have ASD, I do experience a pull towards writing that is like the pull I feel towards counting change. I'd characterize that feeling, and the satisfaction in putting things cleanly together and moving through them again (reading or playing) as an ASD feeling. This doesn't objectively benefit me at all and probably makes me write slower and linger over things that are done. However, I enjoy it a lot.

Something else subjective: I usually don't refer to myself as having synesthesia since that seems to imply something more hardcore than what I experience. But color hits me hard emotionally, and sound is accessible as visual information (not bright colors; the important thing is the shade, pattern, and edges), sometimes to an overpowering and shiveringly beautiful degree. This, and a certain stiffness and shakiness that comes out of prayer and a few other things, is my primary relationship to God. This strikes me as a DD, if not specifically ASD, sensitivity, and it's one I'm very grateful for.


Even though I love shivering and colors a lot, I don't really think they can be related to my "functioning level" or be related to whether anyone is mildly or severely affected. They are just feelings and they don't help me look after myself or produce anything. And they are the only part of my ASD that I think is good. This has always been the case. I have never made a post claiming that ASD "benefits" me.

Therefore, I don't really understand why lurker would come on here and ask me how ASD benefits me. It's kind of like if someone came up to me and asked how I liked living on Mars. I don't know what to say because the question appears to be directed at someone who is not me.

Obviously I cannot explain his reasons and maybe he will be willing to do so, but I have a theory of my own. Several months ago I wrote a post called ASD Savants/Disability Redemption in which I suggested that ASD people are expected to prove ourselves really skilled at something (and/or "not really disabled") in order to be viewed as valuable human beings. Maybe if someone has been exposed to a lot of disability-redemption rhetoric, they are so used to the equation skill=valuable=life is worth living that as soon as they hear someone with ASD claiming life is worth living, they just fill in the skill part automatically and imagine it's there.

Well, okay, public statement: ASD doesn't provide me with any skills. And...I really love being alive.

from a comment I posted here

The point of disclosing is that you have "real trouble" if people don't understand the way you are. People may not read you as disabled, but read the way you are as some kind of choice or a symptom of something besides disability.

For example, I am a bad speaker and have been since I started talking. I run my words together, speak softly, get off track easily, and perhaps most unfortunately I have trouble using the kind of words that go with the verbal dress code of the situation (for example I'm often mistaken for a class clown when I'm being completely genuine, simply because my word choice doesn't seem academic enough so my classmates and professor assume it is a joke). By concentrating hard I can make sure I stay on track, but that leads to me seeming very nervous or sometimes like I don't care (because it's hard to monitor my content carefully while also making expressions and looking people in the eye).

One result of this is that people make assumptions about my character. For example because they think I'm nervous, they think that I'm shy or I'm being dishonest. People also make assumptions about me being somehow weak or immature--judgments that are insulting, because they mean that no matter how emotionally strong or mature I may become, I will always be regarded negatively because I have trouble talking.

I also recently heard that someone who interviewed me for a job working as a camp counselor thought I wasn't capable of being responsible for someone else's safety, because I was "so quiet" when I was being interviewed.

Sorry to write such a long and in-depth response but I think these are good examples of how disability can affect a person negatively without being read as a disability.

18 May, 2010

Our shrinking island


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.


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.)


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.

16 May, 2010

The videocast of the IACC meeting from April 30 is up. If you recall I wrote a post about how fantastic certain aspects were. So you should watch some of it!

About Not Being Thought of This Way and Why That's All Right

It can just be a part of me. Not everyone who knows me well sees it or thinks about it. Because:

1. It's a way of doing things. I don't know which contact lens you put in first, what order you wash yourself in when you take a shower, what you do about your hair, how you do your homework. I mean, I may know any of these things about any of my good friends, but I also may not. And likewise they may not know everything I have to do differently.

2. It's my history. Some people are defined by their history. For example you might have a friend whose childhood you are very clear on--deaths, schools, social life. You also might have friends who don't tell you much about their history. It's not because you aren't close, but you get different parts of them, like their ambitions or their fandom, or their beliefs. This stuff is more visible in my past than in my present, but depending on what our friendship is like, a person may not know that.

3. Carrying through on the same track, disability is a particular kind of interest for me as well. With some people you talk about feelings or other people, or you mostly watch TV. With other people the connection is the big thing and it's less about exchange of information. To be exposed to the fact that I identify as disabled, someone would probably have to be someone who I'd be interested in discussing my beliefs and theories with.

When I run through the list of the people I consider my good friends, I think that everyone knows. But there are some people who I almost don't remember if they know. And then there are other people with whom it's quite a big part of who I am--generally friends who have disabilities or illnesses (though not all the ones who do, and not none of the ones who don't).

It's strange to write this because I seem to be implying that without me talking about it, no one would know. I was going to say that for better or worse, I pass even when I'm not trying--which doesn't change my ways of doing things, or lessen impairments that are not related to the way I look. However, I'm not prepared to judge how much trying is trying, or how much passing is passing. I choose certain environments and types of people where someone like me is more acceptable. And I've found when I try to get drunk, nothing happens because I keep myself very well-trained in almost every state.

But a point is, fantastically and sometimes miraculously, under all this calculation I am capable of connection. And the main point is just that not everyone I am connected to thinks of me as Autistic or any of those words--which doesn't mean that I'm not. But just that they have a particular kind of me.

13 May, 2010

surreptitiously left on a desk in Joe's classroom

a girl wearing glasses and holding up a greeting card with a picture of an armadillo on the front

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.


12 May, 2010

Negative and positive

Autism is only a gift if you consider a giant pile of shit to be a gift.

Although I tend to think it's weird to be complaining and making a big deal about someone else's giant pile of shit. I guess that maybe if it's your kid, you could argue that people have such strong feelings about their kids that they're just sort of feeling the shit that their kid feels, sympathetically--but has it really ever helped anyone who's coping with a giant pile of shit to have the people who are supposed to help them, their parents, just carrying on all the time about it? I mean when things are awful sometimes you want to just ignore them and it doesn't help if your parents are making a huge deal.

My experience is that it's a lot easier to carry on about someone else's problems than it is to carry on about your own. Because if you actually have them and you had to think about them all the time it would make it impossible to actually do anything or be in a good mood.

But I think what I was going to say is that I'm apparently some sort of alien for thinking autism is a giant pile of shit? Sometimes I wonder if the difference is between negative and positive symptoms--and I don't mean negative and positive as in good and bad, but the way they're used when talking about schizophrenia.

So negative would be not being able to do things other people can do, or not being able to do them as well. And positive would be doing things that are obviously different.

I'm not really trying to say that these are two different types of mildly affected ASD people. Obviously people have pieces of both. But I feel sometimes wholly negative and like that's even worse because no one will ever notice that I need help. Or the worst thing is that I just look sort of nervous or there's this tiny little thing left that people sense, that they don't even consciously think about, and that screws me when I'm passing.

Today I was thinking how I used to have much more trouble with phones than I do now--I was quite terrified of them in fact--but for some reason, quite a lot of these thoughts don't actually make me feel better, they make me feel bad, like, "Oh, here's one more thing I can't use to prove that I actually have a disability, because it's better."

Why does it not make me feel better that I can do these things?

Well, two of my references for my summer job told me that the person who interviewed me, when she was talking to them, kept talking about how quiet I was, and asking if they were sure I would be competent, and saying that she wouldn't put me in any situations where I'd be responsible for someone's safety.

Which I don't understand. I learned to use phones. I practiced a lot. I worked hard. And then--oh cool, because of the way I sound on the phone--

I was thinking about one article on the ASD rights movement that was written in the last few years. It was the New York Magazine one maybe. I just remember this part where the author was meeting with ASD people who are in the movement, and the author kept characterizing them as being "just a little quirky," and while he wasn't really trying to devalue them I don't think, that characterization does imply some things.

But when I think about it, to work so much, to be so scared and tired all the time, just that little bit of failure is enough, to completely wear yourself out every day and barely have the energy for anything but passing, and then the conclusion is--"just a little quirky," being used both to imply that you may not have that much of a right to speak, but also showing that you haven't even completely succeeded, that you're still doing it wrong--like a line infinitely approaching zero. You'll always do it wrong.

So I don't know. Maybe positive people aren't this tired.

Chill out about facilitated communication, okay?

People get so excited about kicking facilitated communication in the face as much as possible. My psych book has a sidebar in the DD section called "The Bogus Form of Treatment Called Facilitated Communication" which gleefully announces the poor results of FC studies and says how awful it is that Autism is a World ("which purports to show that FC works") was nominated for an Academy Award.

I really don't know how to react to this.

I don't agree with a lot of what Sue Rubin says but, you know, she's a person. Autism is a World is a movie about Sue Rubin, a person. Referring to it as a movie about FC completely erases her.

FC is easy to fake and frequently has been faked. It shouldn't ever be assumed to be working without evidence that that particular person is really typing. However, I feel like there is a way of reacting against FC which is not about FC at all. (In fact, it is even leveled against AAC users who are not communicating in a situation where someone could be physically influencing what they say. The immediate assumption is that they are being influenced, whether there is evidence of that or not.)

In the Amazon comments for Autism is a World people are basically saying stuff like: look at Sue Rubin. How could she possibly have those thoughts? This was also said, of course, about one of the first people to benefit from FC, Anne McDonald, who has CP and grew up in an institution thanks to a diagnosis of severe intellectual disability. It is pretty inarguable that Sue Rubin and Anne McDonald are really typing when they type. Which definitely doesn't mean that most people who someone is doing FC with are really typing. But does this mean that it's bad to do FC with someone, especially if you are doing it to attempt to teach them how to type independently later? I don't think it's bad at all as long as you don't assume that the person is expressing all their own thoughts.

But my psych book bemoans the fact that some people who work with nonverbal individuals still use FC as a treatment! Oh no! Because...every treatment is proven to work all the time? Stuff like music and outdoor activities are probably not proven to consistently "work" for severely disabled people, but...you know, I feel like they're a good idea. Because they might be helpful in some way.

Sometimes I just feel like there's this element of, "Aha! I told you that people who look like that don't have anything to say!" And that makes me feel very scared.

09 May, 2010

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?

Something I'm not going to say in workshop

This genre of story ("shit I've had to put up with thanks to my severely disabled sibling," as you put it) has a social context. You may just be writing how you feel, but my reaction is:

1. Does A. have the skills to write a story about the shit she's had to put up with thanks to you? About the things you will never do?

2. If A. needed help writing a story like that, do you think your family or the staff at school would be willing to help her? Do you think they would ever suggest that she write such a story?

3. If A. wrote a story like that, do you think people would read it and be sympathetic?

I'm pretty sure that the answer to all these questions is no. So I think that just writing how you feel isn't enough. I feel like if you're going to write something about A., you'd better make damn sure that you're being compassionate--really compassionate, compassionate to A. as an individual, not "she will never" compassionate which is not about A. at all.

You have a lot of power as someone who has the language skills to express yourself without help, and you have a lot of privilege as a person who is not disabled. With great power comes great responsibility.

08 May, 2010

me: omg I love being human so much
(I mean, the show, not the experience)

07 May, 2010

On not being real

I'm too tired to write, but I feel uncomfortable because a girl in my writing class just turned in a story about her sister who has severe ASD. We previously had an exchange about ASD that was really uncomfortable for me and I'm dreading reading the story. A cursory glance reveals that it contains the line "she may never fall in love," which is all kinds of offensive to me, but I don't really know what to do or say in the workshop next week. I just tend to feel really shitty and fake-disabled in these situations.

A lot of the time I feel like it's not okay for me to be writing this blog or be into these things because I'm not really disabled. Like it's just an accessory for me and for some people this is real.

I try to calm myself by thinking "what if I had CP?" What if I was a walking, talking college student with CP and I had had some stuff to say about it in my writing, and then someone wrote a story about their sister with CP who was nonverbal and quadriplegic? I don't think I would feel like this. I think it's possibly something to do with the social construction of autism, in particular.

Or the idea that the thing that makes my thoughts difficult to organize and express isn't just less of what makes my classmate's sister the way she is. CP is just physical so you couldn't tell a person with mild CP that there is some complex thing about the being of someone with severe CP that they just don't understand. Of course, I don't have CP--maybe people do say things like that and I just don't know it. I assume that severity levels of CP aren't so extremely divided in the cultural messages about CP I've gotten in my life, just because, if they were, that analogy wouldn't actually make me feel like less of a huge faker using a disability as an accessory.

If you are on the mild end of a spectrum disability that isn't autism, I'd be curious to hear if you feel fake-disabled and/or like you don't have the right to talk about things. (Mild is relative obviously: the comments on this post prove that even a severely disabled person can be told they don't know what the Real Disability is like.)

06 May, 2010


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.

05 May, 2010

Possibly the best Kartheiser interview yet

I forgot to post about a very important current event.

Vincent Kartheiser: 'I definitely do psychopathic. I don't try to, but it just sneaks out'

The Guardian did an interview with VK in which VK revealed that:

1. he lives in a wooden box (not a joke, the reporter saw it)
2. he doesn't have a toilet
3. he tried to steal a giant rock from a waterfall to use as a sink, and when a guy said, "stop, that's my rock," VK responded, "it's the world's rock!"
4. he hasn't had a mirror for "six or seven years"

He also claims not to be rich ("I think I get some money from Mad Men but really the writers and actors of TV shows don't usually get much money") and says that he gives away all his possessions. And that people come up to him at parties and tell him that they hate him and he's like "oh do you mean you hate Pete" and they're like "whenever you come onscreen I want to vomit, I hate you so much."

He's "never been monogamous." That is okay. I would probably not be monogamous if I was Vincent Kartheiser. THE PERFECT MAN.

04 May, 2010

No One's Ever Going to be Endlessly Alive

When I was younger (i.e. until like a year ago, let's be totally honest) I used to think that I should become a rock star because then I could move as much as I want and no one would notice. But then when I make videos like this I spend the entire time being like "STOP TOE-WALKING YOU LITTLE CREEP!" Because unfortunately it turns out there is some sort of divide between what looks DD and what looks like someone who just really likes music (and is awesome).

Disclaimer: I know that if you're a Diagnosis Police Officer you will be like, "There isn't any toe-walking in this video! You're the most made-up Autistic person ever!" That's because I'm trying not to. I mean, I know I shouldn't try not to, but I do, and maybe as I get older I'll be less of a twerp about this stuff.

I think I can't stand the way I feel
I can smash in all the doors but it's not real
And I know, I know, I know, I know how you feel
I know, I know, I know, I know it's not real

I think I can't help the way I am
You can hate it all you want but it's the same
And I know, I know, I know it's just how I am
I know, I know, I know we're not the same

I'm not real and that's okay
I'm really calm with my place
Remember, you are always tender
Remember, it doesn't mean what you think

Because no one's ever going to be endlessly alive

If my palms are the only sensitive parts
I have left I will scrape them on all the doors
'Cause I know, I know I've got to squeeze it out
The rest of me, I'll use it till it stops

I'm not real and that's okay
I'm really calm with my place
Remember, you are always tender
And remember, it doesn't mean what you think

Because no one's ever going to be endlessly alive

I think I can't stand the way I feel
I can smash in all your doors but it's not real
And I know, I know, I know, I know how you feel
But I know, I know, I know, I know it's not real
I felt kind of confused by one of the Blog Against Disablism Day posts that was at FWD/Forward. The post, Do You Need Assistance?, was advice, identified as being for non-disabled people, about how to offer help to a person with a disability.

I think the reason I'm confused is that I know that a lot of the FWD/Forward contributors, including I believe the contributor who made this post, are "invisibly disabled." They did a good post a while ago pointing out that "invisible disabilities" are not really objectively invisible, they just can't be seen by people who assume that everyone is non-disabled unless there is a really obvious and stereotypical indication that that's not the case. So maybe I shouldn't be using the term invisible disabilities, but it's hard to come up with a better one. But what I mean is that there are some PWDs who aren't perceived as being disabled and so aren't going to be reacted to by non-disabled people with the attitude of "oh, a person with a disability, I wonder if I should help them."

The poster, s.e. smith, included a description of a time when ou was in the grocery store and asked a wheelchair user if he needed help getting his stuff on the conveyer belt.

I didn’t shout at him or talk very slowly as though I was afraid he wouldn’t understand me. I looked at his face, not his chair, while we were talking...In addition to watching your literal language, it helps to watch your body language and tone; are you using a sing songy voice? Are you talking any differently from the way you would talk to anyone else?

This is definitely a very small part of what is otherwise a great post, but it's something that Zoe (zheyna) reacted to, and she pointed out in comments that as an ASD person she doesn't necessarily look anyone in the face. (I have a very singsongy voice, so that's what stood out to me.) I'm leery of trying to summarize the conversation because I feel like I might mischaracterize what people were trying to say--you should read the comments. But while I really like FWD/Forward, and am not trying to start a fight with them, I felt that the responses of s.e. smith and lauredhel, to Zoe and then me, seemed to be saying something like, "Well, this post was aimed at people without disabilities." (With the implication being, it doesn't matter if these tips can't work for you because of your disability.)

I really don't understand this because I think that Zoe and I are in exactly the same situation as any nondisabled person who sees a wheelchair user in the grocery store and doesn't know if the person would like help. I don't know a lot of wheelchair users in real life and I think I can use this kind of advice just as much as someone who isn't disabled. Also I don't know if the average random wheelchair user on the street would even consider me to be disabled--even if I explained why I consider myself disabled. And if I didn't explain, almost definitely not.

I tried to say this in the comments but then I was told that FWD/Forward does consider people like me to be disabled and that many of the contributors are not, as lauredhel put it, the stereotypical "Wheelchair/Blind/Deaf." I felt that this didn't really answer what I was saying though. I consider myself disabled but in that situation, where I am offering help to someone, I'm not going to be read as "another disabled person" by the wheelchair user. At worst I'm going to be read as an asshole because of my singsongy voice.

It bothered me that s.e. smith said:

I don’t think of ‘interacting with people with disabilities’ as 101 for disabled folks! People with disabilities can and do help each other out (and are not necessarily read as disabled when doing so), but, for the most part, this post was designed as guidance for people who are not familiar interacting with disability. Folks who identify as disabled clearly are familiar with interacting with disability and they already treat people with disabilities like fellow human beings, which was the most critical point made in this post.

I don't think that I treat wheelchair users, etc., as not human, but I also don't think that the fact that I have an extremely different disability gives me any sort of leg up in being better at interacting with wheelchair users in a respectful way.

Sorry if I'm being a jerk by posting this, respect to all involved, etc.--I've been trying to write this post for several days and I'm actually just going to give up and do it now. It is not meant to be personally critical of s.e. smith, lauredhel, or FWD/Forward in general, but I really don't agree with what was being said.
I know this is a really dorky thing to say, but given that I've been really terrible at posting lately, does anyone enjoy reading Pushing Daisies as a disability-related story?

02 May, 2010

Church at home

When I was a kid I was afraid of the sound of flushing the toilet. I'd run out of the bathroom as fast as possible, without washing my hands. When I got older I was expected to wash my face and use an electric toothbrush but the electric toothbrush especially upset me too much.

Normally I'm okay. But the worse things get, the less I can handle the sound and feel of the electric toothbrush. Also, I find church to be very scary, as I've mentioned several times, so the worse things get, the more I become this little unhygienic person skulking around my dorm on Sunday morning, with very dirty hair and very dirty teeth (or, possibly, trying to get into the bathroom when no one else is there so I can jump around while brushing my teeth to distract myself from the toothbrush overload).

Oh right! So, because of not going to church, I was thinking maybe I'd try to write religious stuff here on Sunday. I tend to think that I was better on God stuff when I was thinking about it in on my own instead of feeling that it had to be about other people, or specifically about social structures. I almost feel like developing the idea that I had to go to church is one of the biggest mistakes I've ever made. I can probably count on all my digits the amount of times I've gone to church since I made that decision two years ago, so it's just a way of making myself feel like a failure because church is hard for me.


I’m glad I’m Christian because other religions don't have room for what a major shit I am.

I believe certain things about God. Specifically: I am NOT good enough. Something needs to take me over. Terribly. Always.

It’s not about sitting around and whining about how I’m not good enough. I think of it as being a lot like disability. My sin is not a tragedy. It’s also not nothing. Something has to be done about it. God is my assistive technology.

01 May, 2010


me: so does todd want to write a blog against disablism guest post?
todd: oh dear.
todd: what is the idea?
me: it's okay I just wondered, since I didn't have anything to say myself because I was too happy
todd: maybe todd could answer a couple of questions and there could be an interview instead of a blog post.
me: Yeah! I could interview you! What do you want me to interview you about?
todd: hmmmm
me: it has to be about ableism
do you want to talk about problems at school?
todd: hahaha!
i probably...
just a sec...
me: I mean, I like your name
todd: toddynho?
me: I just thought if you minded. but I guess a lot of people are named todd
but I like your name!
todd: also, it's SOOOO annoying to be called "[firstname]" all the time.
me: your name is Todd
people call you [Firstname]?
todd: like at the dr's office.
me: why?
todd: because i'm [firstname] todd [lastname]
me: oh
todd: maybe that's what you should put on your blog.
me: wait, so what do you want the interview to be about
I mean, do you have anything interesting to say about ableism? would you want to talk about your experience with certain jerks at school?
todd: tell people that if they have a kid, and they decide to put the name they're calling him or her in the "middle name" position, they might be causing that kid a great deal of avoidable stress, anxiety, and discomfort in the years to follow.
actually maybe it's better for me not to talk about ableism.

Accidental Happiness Day

First I just want to tell you guys the very best Google search that has led people to this blog:

"can an autistic person seem smart and be an asshole"

Hopefully their question is now answered. Also I wanted to apologize because it's Blog Against Disablism Day and I figured I'd get angry about something and be able to write about it, but today I woke up feeling incredibly happy. I think my uncomfortable fallacy post from a few weeks ago is a good post about a particular kind of ableism. Amanda Baggs's BADD post If only, oh if only is a really good post about feeeeeelings, which I'm sure is the subject I would have ended up writing about if I had been in the mood.

But: why I'm incredibly happy. Yesterday I watched the live webcast of the Interagency Autism Coordinating Committee. As it says in my sidebar, any discussion of policy goes completely over my head so I'm not going to try to talk about the IACC meeting in an intelligent way. You should read the transcript or watch the video when they go up on the IACC website.

I was basically watching it because Ari is on it now and I was interested to see how he did. And of course I was a bit scared for him because I don't feel safe about that kind of people. About the time I started watching, a guy was making a big speech that I wish I could remember more accurately, but it contained basically every awful thing you could say in a really short period of time. "If you're a parent, or just any person, or an individual," he said, and I got excited because sometimes individual is a euphemism for disabled person, "an individual raising a child with autism, you must be going through hell now that this disease has struck. But you know what they say--if you're going through hell, keep going."


At the same time, this is completely ordinary and unsurprising. It's not like I was like, "Oh poor Ari having to listen to that" because I constantly hear that stuff in the real world, and you probably do too. For me, it's not even the hell thing or the disease thing, it's the completely ignorance that people with disabilities have feelings. Seriously, if he'd just said "autism is a terrible unbearable disease and it must be hell for the people who have autism," that would be something. But no. People with disabilities aren't upset or not upset; we just...aren't there.

Then as I watched the rest of the meeting, two things happened:

1. Ari would reframe stuff. For example, Geraldine Dawson from Autism Speaks presented research which included the fact that a lot of ASD people have some form of mental illness and a lot of ASD people are on psychotropic drugs. Ari said something like, "The amount of people with developmental disabilities who have mental illness isn't as high as the amount of people with DD who are on psychotropic drugs. Are you studying how many people are being inappropriately given drugs as restraints?"

This was really neat because just as Francis Collins (the going through hell guy) was coming from a perspective of assuming that everyone thinks autism is awful (and that everyone who thinks or feels anything does not have autism), Ari was talking as if he assumed that everyone a)thought of autism as a developmental disability, not a disease, and b)was really interested in people with DDs being treated ethically.

2. During the public comment section, two people with ASD talked.

Both of these things made me very excited and led to my feeling of happiness when I woke up today. Usually when I hear the word "autism," I don't feel at all safe or welcomed and I don't think that the things that are going to be talked about are things that are important to me. Some of the people who were at the IACC meeting thought it was a meeting about Autism the Horrible Disease. But other people thought it was a meeting about Autism the Disability, and both kinds of people got a chance to talk.