Rabbits

When I worked in an institution I was afraid that I secretly liked institutions.

I was afraid that I liked the fact that I had a very specific job, that I would get told off for even trying to plunge a toilet myself instead of calling the person whose job it was to do that. I was afraid I liked all the alarms and call lights that worked in the same way, the small number of kinds of beds where once you knew how to operate a few of them, you knew how to operate them all. I was afraid that I liked every bathroom having the same color washcloth and the same brand of shampoo.

Obviously I am Autistic so on the surface some of this makes sense, but it's also something other than that. I was worried how deep staff infection went and worried that scheduled lives had started to seem normal to me.

I've been working in "home care" for a few weeks now and it's definitely hard for me to have to do stuff other than physical support when I have trouble cooking and cleaning for myself. But it's incredibly worth it.

I don't think I had really thought about the distinctness that a person's own home has. Not just the space but the way they do things, and how their ways and the space interact.

I love messy rooms full of dirty dishes, tables of grandmotherly objects like wind-up Easter rabbits and Christmas trees that are up all year. I love obsessively organized rooms too, with labels on everything. I love getting to work with someone who hasn't been moved across the long term care hall to a different room with a different stranger, but is living in the house where she raised her kids.

I feel very cheesy describing it this way but it does feel like my function is to be part of the machinery that helps someone keep being themselves, and that's really exciting.

For the record I identify as disabled not as autistic.

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

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

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

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

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

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

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

more normal = progress

I worked on this post for...um...well, a long time. Probably like 2 or 3 hours today without stopping for anything, and that's probably the third or fourth period of time I've spent on it.

more normal = progress

Basically it's a LOVE-NOS post showcasing the assumption mn=p, and how it's applied by professionals and laypeople to people with disabilities. I tried to use as many examples as I could think of to show how mn=p really knows no disability and can manifest at a lot of different levels, from seemingly innocuous to obviously vicious and abusive.

You should read it because writing it took over my life. You should also read LOVE-NOS in general because Julia wrote some really beautiful things that I can't take the time to link to individually because I haven't eaten anything in a really long time and all I can think about is food. But anyway, go over there please.

Finding it (well, sort of)

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

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

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

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

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

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

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

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

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

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

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

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

I have to stop

I just get really angry sometimes. And it's about all the same old stuff.

But I just can't handle the high-functioning/low-functioning thing, not now, not ever. And I don't really have to, often, because this is a pretty small blog and most of the people I am in contact with as a result are people with autism-ish disabilities, or people who get it. But sometimes I end up reading comments from people like Harold Doherty and I just...I can't do it. It just is too much.

Partly this is because--I mean, if you read my stuff you know that sometimes I have thought a lot about killing myself or hurting myself. Sometimes I've had to sort of disappear from myself because things are so hard. I have a lot of brain problems. And right now I get the privilege of being close with a lot of people, but this feels like a privilege because I used to be very much alone. But the social stuff is the least of it. Cognitively, and emotionally, a lot of things are unbearable sometimes.

And I just seriously can't handle these characterizations of "the kind of people with autism who don't want a cure" as being a person who isn't really affected and thinks everything is great. People who say those things don't live my life. Usually, they don't live any kind of disabled life. They don't understand that a person can be very taxed and still usually want to live. They don't understand that a person can want to die, but still think that a cure isn't the only solution to feeling that way.

I hate having to always pull this out, because really anyone should assume that people who are involved in anti-ableism know people with severe disabilities--but I know people with severe disabilities, mostly through being staff for them and volunteering with them (which is a weakness, I'd like to get to know more severely disabled people through self-advocacy and in my everyday life). And...it's not any different, when it comes down to life. They're not tragic people. Most people have the equivalent of what I was talking about the other day, when I was talking about wanting to die. People have things that move them through life, things that are special to them.

Some people with severe disabilities, like people with mild and moderate and whatever you want to call it disabilities, are very lonely and very sad and are not getting the help they need. This is a tragedy. But we, disabled people, are still not the tragedy.

I really can't handle, with how much stuff hurts sometimes, seeing people like me characterized as not really having any problems and not really being affected by disability. Things are really bad and people who are invested in the tragedy model of disability will never be empathetic enough to understand how bad things are, because I don't consider myself a tragedy and therefore I must not be suffering ever.

One problem with this whole way of thinking, this division, is that it makes all my suffering and all my hard work meaningless. These people think that if you do something that people with autism aren't supposed to be able to do, then it's just because you don't really have autism. This is one of the attitudes that most makes me want to kill myself, because I know that even if I work really hard and accomplish a lot, no one will respect me for this because they will just see me reaching a level that a person without autism could reach, and refuse to believe that I'm not just a normal (or normal enough) person operating at my base level. Sometimes it feels like there's no motivation for me to do anything.

The last problem is just that one of the people that Doherty et. al. most like to use as an example of someone who has a really easy time is one of my best friends and is the only thing that keeps me going sometimes. I know that my friend is not a person who is unaffected by disability. He is probably the epitome of someone who is working way beyond their means, and he pays for this all the time. I love and respect him for doing this to himself, and I feel that even if someone doesn't agree with his work, they should respect him for how hard he works to do it.

But they don't, they don't, they don't, and that breaks my heart (because I'm easy, I guess, kind of soft), and it just makes me, more than anything, sad to read what these people have to say. It gives me a sense of being erased and thrown away, of being completely nothing. I really don't know what they want from us--if we all just laid down and died, would they believe that we're really disabled, or would they just change their definition of what disability is?

from Ragged Edge Magazine May/June 1999

Playing Cards at Boston Children's Hospital by Lisa Blumberg was linked in a blog I was looking at and it's a really good and important piece. It made me really upset to read it.

It was striking to me how much I related as an Autistic person to the professional attitudes that Blumberg experienced, since she has cerebral palsy and no mind disabilities. I'm kind of leery about doing this because I don't want to give the impression of appropriating someone else's very different experience, but I want to quote some of the lines that really resonated with me:

Once Matty [her physical therapist] watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."

I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words...

When Blumberg was in her first year of college, a doctor spent months pressuring her and her mother to agree to a surgery that involved cutting into Blumberg's muscles, even though Blumberg really, really didn't want it. The doctor constantly told them that if she didn't get the surgery, her hips would dislocate by the time she was forty (then he kept lowering the age at which this would supposedly happen). As an adult, she found out that there was no way this would have happened before she was very old.

By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement...Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.

Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.

... Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.

At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."

No one had told me. I had not been playing with a full deck.

"Why did he do it?" I screamed.

"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."

So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.

...By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.

Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.

I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this...It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man.

(emphasis mine)

"it's social model vs. medical model NOT mild vs. severe disability" transcript

Hey, okay, so I just wanted to say something because I keep reading a lot of flamewars, which is probably a stupid thing for me to do 'cause it just makes me annoyed, but I just ended up feeling like if someone just came out and said this then people wouldn't be so annoying to each other on the Internet.

So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.

Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."

And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.

Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.

And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.

And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"

Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."

Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."

So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.

So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.

And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.

who does sadness belong to?

I was just rereading the transcript of the May 30 IACC meeting and I came across a particular saying that Francis Collins used in his not-especially-sensitive comments.

"A parent is never happier than your saddest child."

Now, what does this mean? Is autism the same as sadness?

And if Autistic children are sad, does their sadness belong to their parents instead of to them?

Collins, who amused me by saying, "I know this is a tough time for anybody, any family, any individual who is going through the experience of raising a child with autism spectrum disorder" (bending over backwards to include all family structures, but forgetting that actual disabled people might be having a tough time), probably does think that. What does it mean if you don't even have the rights to your own sadness?

A few months ago I was consumed by the idea that my parents would have aborted me if they had known I would have ASD. Despite knowing it would lead to a lot of drama, I couldn't help but ask my mom if this was the case. She said that she wouldn't choose not to have me now that she knows me, but that if she hadn't known me but had known "how sad you would be," she might have had doubts about bringing me into the world.

The thing is I don't think of myself as a sad person. Obviously there have been occasions when I've been really sad, but I'm a pretty dissociative person (which is scary, but I guess it happens because I need it) and I also tend to produce a lot and be very spiritual when things are going badly. I'm not saying I enjoy being sad but I just don't think of it as being a big part of my life; it doesn't happen that much and when it does I focus more on the byproducts.

The worst thing about times when my life is going badly is that my mom won't stop talking about it and basically criticizing me for wanting to do other things than emote about how bad things are. I feel like she doesn't understand that if I did constantly do that, my life would be terrible. I couldn't think that way, so I don't. The way things are, I'm more guilty about how sad she is about my "sadness" than I am actually sad myself.

It becomes an affront to her that I am not worried and sad in the way she thinks I am or should be. It also becomes insensitive for me to be uncomfortable with the idea that I maybe shouldn't have existed because of my sadness--it's insensitive to her, because my sadness doesn't belong to me, it belongs to her.

It kind of reminds me how fans of Jerry Lewis and his telethon will accuse his opponents of being "bitter" or "hateful" when in fact the opponents are the ones being positive, and the telethon is negative. Even though Jerry Lewis doesn't have muscular dystrophy, he has ownership of it and gets to decide how it feels. If people with MD don't consider their lives to be tragic, then they're taking away something that belongs to Jerry Lewis. Somehow, they're the ones being mean.

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."

Nice.

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.

Feelings are not real

So for some reason I was torturing myself by reading the blogs of a bunch of curebies (I know that curebies is kind of a rude word and I try to be more civil, but I don't know what else to call them). They were talking about how they think Ari Ne'eman doesn't care about individuals with severe ASD.

I disagree, and have said so in previous posts, but that's not really the point. Nothing very exciting was happening. Then, one of the people who was listing Ari's supposed views linked to another website. I clicked on the link, expecting it to be some sort of statement he'd made that had offended them.

However, it was actually this: http://www.asperger-advice.com/asperger-syndrome-behavior.html

Get it? Ari is inherently incapable of understanding other people's feelings! That's why he has the wrong opinions. Because he simply doesn't understand that other people feel bad, and if he could just understand feelings like normal people do, he would have the right opinions.

This is sort of a refreshing break from people who claim that he's not really autistic. Except, it's actually not, because it's a fucking giant piece of hateful bullshit! I should mention that this isn't really about Ari or anyone in particular. It's just a fucking terribly stupid thing to say.

I mean, first, the obvious: this isn't what the ASD "lack of empathy" is about. I don't pretend to know exactly what it is, but here are some ways of thinking about it. (I don't agree with all of these, but I'm trying to be exhaustive.)

1. people with ASD can't read other people's body language instinctively so we don't notice other people's emotions as much
2. people with ASD think about things differently from normal people so we don't have as good a sense of what to expect as they do with each other
3. people with ASD are really overwhelmed by a bunch of stuff and don't have as much energy/processing ability to spare figuring out other people's feelings and reacting to them
4. people with ASD notice things about other people, but we don't always notice the "relevant" thing (remember the Square 8 post where Bev realized that someone was upset because the person's clothes were messy, but no one else noticed because her body language seemed normal?)
5. people with ASD don't understand that other people don't all know the same things we know
6. some combination of the above

So, absolutely none of these characterizations of ASD empathy impairment have anything to do with not caring about people, or not understanding/caring that someone else is upset if you are explicitly told that they are upset. So, what the fuck is this person talking about?

Basically nothing. Basically trying to figure out another way to say that Ari (or insert name here) doesn't have a right to speak.

I'm just going to say something: I don't care about your fucking feelings. Don't you think that I, for example, also have feelings? Lots of people have feelings but only privileged people get to spend four hundred million hours talking about them. If you have a kid who fucking has seizures and bites himself, you know who everyone is supposed to feel sorry for? That's right. You. Not the person who is in actual physical pain and probably feeling terribly overloaded all the time.

People with disabilities are never expected to feel as bad as the people around us. This is why people get away with saying really fucked-up things about their disabled relatives, and even abusing or killing us. Because their feelings are such a huge deal that they totally trump the actual real things that happened to the disabled person.

The funny thing is, I actually have plenty of doom-and-gloom views about ASD and disability in general. I don't think ASD makes me special. I'd rather not have it. I think lots of other ASD people would rather not have it too. But since I'm an actual person with ASD, if I just sat around thinking about how it isn't all that great, I'd become really depressed and useless because it's my entire life and it will never not be there. (By "my entire life" I don't mean that ASD is my only notable quality--I mean that I've never lived without ASD, and I never will, unlike family members of people with ASD who claim to "have autism" or "live with autism").

So, instead of just being like "feelings feelings feelings feelings feelings," I try to look at all the interesting and meaningful aspects of having a disability, and I try to learn about and help other disabled people, and teach and be helped by them. I feel like when I do this it becomes one of the coolest parts of being alive and then I maybe understand why God made me disabled in the first place.

I sort of went off on a tangent and I apologize because I was trying to talk about the really screwed-up "you just think that because you don't have empathy" tack. But this just makes me so upset because it seems to tap into the whole thing about how important feelings (usually non-disabled people's feelings) supposedly are. I'm sure Ari has feelings too, but he doesn't feel the need to spew them all over the place like you do, and he has the grace to say "I disagree with you" instead of "People who don't have autism are incapable of understanding logic," or whatever.

this is a transcript, obviously

Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."

Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.

So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.

Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]

...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...

I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.

I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.

I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."

I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.

But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.

Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?

But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?

I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.

I support Ari Ne'eman, part two

Hi.

I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.

I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.

I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.

In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.

The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.

The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.

But I do think ASD mice would be really cute.

I support Ari Ne'eman obviously

So, as you probably know, Ari Ne'eman is a young Newfoundland with a disability (he's not really a Newfoundland, I just think he looks like one) and he recently became the first ASD person and I think also the youngest person ever to be nominated to the National Council on Disability.

However, someone put a hold on his confirmation because he is controversial because people who are ASD aren't supposed to have any opinions about ASD. Basically Ari doesn't believe in curing autism and has said things about disability being socially constructed, and since no one has ever said this about cerebral palsy or paraplegia or anything, that means that Ari thinks that autism isn't really a disability. (Kidding! I'm just trying to present both sides.)

It doesn't help that any time someone writes an article about Ari, they just obsess over the fact that he has ASD, and the entire content of the article is like, "ARI NE'EMAN IS A SPECIAL GENIUS BUT HE HATES VELVET AND WHEN HE WAS A KID HE DIDN'T KNOW WHAT SMILES LOOK LIKE." I actually used to really dislike him and groan whenever I read an article about him; I can trace my not-dislike of him to the moment I encountered an interview with him that was actually done by someone who knows what disability rights is.

It was really scary about the confirmation hold, not just because his confirmation is getting delayed, but because it might encourage more people to write articles about how Ari is a)A SPECIAL VELVET-AND-SMILES-HATING GENIUS, and/or b)doesn't know that severely ASD people exist, or doesn't care about them due to his impaired theory of mind (remember: he hates SMILES!). The scariest part is that Ari isn't allowed to talk to the media until he's confirmed, so the articles might just quote some random thing that he said in the past. Scary!

Except, it turns out that in the past, Ari said the most awesome thing ever:



And the New York Times article about the confirmation hold quoted him:

Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.

Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.

“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.

The part in bold is my new Facebook status, followed by a bunch of <33333s, and probably will be for a long time. MOUSE MODELS!

I apologize a lot for the really giggly and lulz-y tone of this post, because I know that this is a serious issue and I want to express how much I support Ari--okay, quick, let's watch me try to sound really serious. I think that Ari is a very moral and very competent person. I think that rather than being a weakness, his age actually shows how incredibly passionate he is about helping other people with disabilities. And I don't think being in politics proves he's not really disabled. I think he does things that are very hard for him, because he feels they have to be done. And the hold on his confirmation is a really bad thing to happen to a really good person who does important work.

I'm relieved about the New York Times article, but the content of course is bad news. And hopefully some people with clearer heads than mine can write posts that address this more thoroughly.

the stuff in italics is what I'm actually going to say

I am dropping your class. I feel like I have trouble relating to and grasping the concept of ableism as it is portrayed in the class.

The idea of not discussing specific disabilities or people's personal experiences makes me feel really confused. As a disabled person, I experience ableism in a way that feels very specific. For example, because I am not visibly disabled, I often get to avoid the experience of being stared at or treated oddly by strangers; but I am also expected to educate others about my disability in order to explain why I need help, and run the risk that people will simply refuse to believe my disability is real. Because I have a disability that is somewhat fashionable in the media, I get to be seen as interesting (albeit in a rather insulting way), while people with less fashionable disabilities, like Down Syndrome, are treated like wastes of space. Because I have a non-physical disability, I am often left out of conversations about disability.

By using those examples, I'm not trying to say that I want to constantly talk about my own experiences in class, but just that ableism in my opinion can be very specific and it's hard for me to understand it the way it's being presented in the class. I feel like I don't know how to talk about ableism without focusing on particular aspects and themes. I'm having trouble relating to what the class is about and I feel that I wouldn't do well in the class.

I also feel uncomfortable because it seems that most of the people in the class are not disabled so I feel othered. By avoiding specifics, it seems like we're working from the perspective that everyone already understands a lot about disability and ableism, which, from my experience with most nondisabled people, couldn't be further from the truth. I also think that you set up the class in a way that isn't accessible. In the syllabus you make a big deal of emphasizing that assignments have to be turned in a very specific way (for no apparent reason), can't ever be late, and have to be formatted in a very specific way. I think that having very rigid policies about how things have to be done is ableist, because it means that people are being judged on their ability to follow a strict set of rules instead of the work they're actually doing. You have a special section on the syllabus saying that disabled students can go through the disability services office to receive accommodations. I think this is ableist because it means that disabled people have to do all the work to be treated equally. I don't see why a person can't just say that it's easier for them to email something, or whatever. I have a lot of trouble planning and executing tasks, so the fact that you have all these rules about how to turn in a paper makes it much harder for me to do a paper and this has nothing to do with my actual intelligence or ability to do the actual core of the work (the paper or whatever).

Also, I feel that this wouldn't be considered a legitimate accommodation by the disability services office because they are also pretty medical model and would just tell me that I should work harder to switch from one task to another. Stuff on an ADA level ("prove you need something very concrete, and I'll give it to you"), is something, but for someone who's teaching a disability studies class, especially a nondisabled person who's teaching a disability studies class to mostly other nondisabled people, it's not enough.

P.S. if anyone can help me figure out how to say some of the non-italics stuff in a briefer and less obviously distraught way, I'd love that. I realized that my only reasons for wanting to stay in the class are a)anxiety about changing my schedule, and b)it makes me really angry and I guess I want to call them out or something. A) is something I can get over, and am getting over by discussing with my friends the fact that my schedule will change, and writing the new schedule in places where I can see it. B) is completely ridiculous, I know, but I just want to accomplish a little of it, tactfully, with this email.

P.P.S. This is actually exactly what I want to say, if anyone can help me put it in the form of an email:



maybe I should just record it and send it to her (kidding)

THE DSM V AGAIN (sorry)

A really long time ago I had talked about how I read an article about how the DSM is trying to change Asperger's, autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and I don't know, I find that very upsetting.

I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted, think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.

This makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.

And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, maybe if you made a diagram, and you had somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person--but I don't know, I still feel like the ways in which I'm different are important, and I still feel very connected and identified with that severely disabled person. And it's very hard for me to feel that I'm not supposed to care about that person [and feel identified with them as ASD people].

And my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But my mom heard this interview with a woman about my age who has Asperger's, and she [the woman] said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled

--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.

But anyway, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well I feel like this is just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis. [Actually I guess this isn’t accurate--one would have a diagnosis of Profound/Severe and one would have a diagnosis of Mild or Borderline. But this is also going to be the case for ASD, I think, so whatever.]

And another example is cerebral palsy, which is a physical disability involving muscle weakness and poor muscle control. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, but they can still talk. And those people obviously don't need as many services, or they need different kinds of services.

So, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged by the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't an acceptable way for services to work. And I don’t get services so I’m not an expert, but I don’t think that’s the way services do work.

So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. That just doesn't make any sense, and I feel like this person doesn't know what she's talking about, about services.

And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.

I read some interview with some guy, who, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And I don't know, I think that's funny because even some people who don't have autism have to use diapers, because all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident...I guess I think it's funny that he thinks that only happens to severely autistic people.

But anyway, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And I don't know, that just makes me feel upset.

On a different (but not extremely different) subject, I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people.

I mean, I've been called "retarded” as an insult. I think a lot of people with Autism Spectrum Disorders have been. And, there are certain people who will go around...well, I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.

But this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And I've been called retarded, and I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are mistaken for intellectually disabled, have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.

And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.

Autism Spectrum Disorders in the DSM V Part 2 Transcript

Um, a really long time ago I had talked about how I read an article about how the diagnostic...something...the DSM...I actually realized I have no idea what that stands for, which is kind of bad. [For the record, I know what the DSM is and all, I just forget what it stands for.]

Yeah, so they're trying to change Asperger's, and autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and, um, I don't know, I find that very upsetting.

So, um, I guess--and I mean, I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like, um, some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.

And, um, this makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.

And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, I feel like, maybe if you made, like, a diagram, and you had, like, somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person, but I don't know, I still feel like, the ways in which I'm different--I still feel very connected and identified with that severely disabled person. And, um, it's very hard for me to feel that I'm not supposed to care about that person.

And, um, my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But it was a woman about my age who has Asperger's, and she said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled

--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.

But, um, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then, um, she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well, this, I guess, I feel like it's just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis.

And another example is, like, cerebral palsy, which is when you don't get enough air when you're in the womb, and it leads to having, like, a physical disability with, like, trouble controlling your muscles and muscle weakness and stuff. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use like a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, they can still talk. And those people obviously don't need as many services, or they need different kinds of services.

So, um, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged--what you need is supposed to be judged by, like, the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't really the case, and to the extent that that is the case, it shouldn't be the case.

So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. Or, um, I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--like, I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. Like, that just doesn't make any sense, and I feel like this person doesn't know what she's talking about.

And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that, um, people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.

I read some interview with some guy, who, like, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said, um, that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And, um, I don't know, I think that's funny because, like, even some people who don't have autism have to use diapers, because, like, all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident, you know, like...I guess I think it's funny that he thinks that only happens to severely autistic people.

But, um, just the same, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And, um, I don't know, that just makes me feel upset

I feel like, um...Okay. I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, um, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people. And also, I think--

I mean, I've been called "retarded." I think a lot of people with Autism Spectrum Disorders have been called "retarded." And, um, there are certain people who will go around...I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.

But, um, this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And, um, I've been called retarded, I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are also called "retarded," have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.

And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.

(I guess maybe I do these in case a person who can't hear or doesn't like noises would be interested, but I also am just interested in figuring out how I speak, which is a lot of why I started making YouTube videos in the first place. I think it's interesting that as I've recently started trying to advocate for myself a lot more, I've started using the phrases "It upsets me" and "It makes me feel uncomfortable" almost compulsively. It's really cool to be able to say those words, I hope someday all of us learn how to say them.)

Neurodiversity?

I have a tendency to make comments on FWD/Forward that aren’t completely on topic and then they don’t get posted and I feel incredibly guilty and anxious about it. It’s true I feel incredibly guilty and anxious about everything that could be construed as a social mistake, but come on, let’s try to avoid it in this particular arena by just making posts on my blog when I’m tempted to comment in an off-topic way! First up: neurodiversity.

I don’t understand what the point of the term neurodiversity is. Someone on the FWD/Forward thread mentioned “many ASD people don’t know that neurodiversity includes other, non-ASD people with different brains.” Which is like...I guess it’s cool that it’s not just ASD people (even if some ASD people think it is) but what’s wrong with just saying “disability rights,” or “autism/ASD rights” if you’re talking about ASD in particular? Wouldn’t disability rights be more inclusive if you’re trying to be inclusive, and if you are focusing on ASD, wouldn’t ASD rights be a more unambiguous and straightforward way to put it?

It just occurred to me that the point of neurodiversity is, maybe, a catchier way to say “non-physical disability rights.” That actually makes sense. It still sort of grates on my nerves because it sounds incredibly cheery, like “differently abled.” Also I’m not sure if that’s what people actually use it for.

The term just makes me uncomfortable. It seems like an attempt to separate ASD people from other disabled people. Or, if not just ASD, disabilities that have a stereotype of Awesome Side Effects that are supposed to make up for the deficits--ADD, depression, bipolar disorder, etc. This is emphasized for me by the term neurodiversity itself. Diversity is a term that has been frequently used in reference to race, ethnicity, religion, class, and sometimes sexual orientation. Disability is being set up as the same as all those things. “We’re the same as you, just leave us alone and we’ll be fine.” But sometimes we won’t be fine. We need help sometimes. Sometimes our impairments are socially constructed (like stimming) but other times we really are worse at doing something that would help us (like processing and using language). I don’t think the difference between PWDs and other minority groups is so huge that we can’t be inspired and encouraged by the way other groups fight for equality, but at the same time, we can’t be fit into exactly the same “live and let live” model. (Actually I’d argue that it’s not a good model for many minority groups. But I’m tangling myself up.)

I feel the same about the explanation of neurodiversity (said by one of the FWD/Forward commenters, I think) as “people have different brains and that’s okay.” This just seems disingenuous. I’m not different, I’m IMPAIRED. And there are people who are a lot more impaired than me who have a lot more to fear than I do from the idea of disability as a neutral "difference."

I don’t know, I might be tilting at windmills, or at the very least semantics (there’s no question that many people I admire and agree with identify with neurodiversity). What do you think?

The harder fallacy

I keep thinking about something my friend said after we watched Precious and I was talking about how the portrayal of the child with Down Syndrome was offensive. (I'm going to refer to the character as Quishay, which is the name of the little girl who played her.) My friend kept saying, "Well, it IS harder to raise a kid with Down Syndrome." I said "Do you actually know any people with Down Syndrome, because if you did, I think you'd feel differently." My friend was like, "What do you mean, do you think I wouldn't think it's harder to have Down Syndrome? It's a DISABILITY. It's not a good thing. Are you saying it's not harder?"

I'm probably caricaturing this in my mind because it was a while ago and also it made me really mad. When I quote people who made me mad I tend to repeat the things they say in this particular voice that's both monotonous and overdramatic. I know this is a problem. I should be mature enough to disagree with people without being shitty about it. But it's really hard not to be shitty about it! Plus I hate the "it's harder" strawman even more than I hate the "but bad things will happen to you if you don't pass!!" strawman (#3 in the linked post).

So, I will just say what I wanted to say to my friend, but couldn't get out very clearly. Here are two facts about disability:

1. For whatever reason, nondisabled people tend to get grossed out or uncomfortable around disabled people.

2. By definition, all things being equal, it is harder to be disabled than it is to be nondisabled. Also, it's harder to be the guardian of a kid who is disabled because it often costs more money and the kid might have to live at home longer, or forever. Also, it's sometimes harder to be close to a disabled person (as a friend/significant other, as part of your job, or as a family member) because you are used to relating to people in a particular way that doesn't work with this person, or because you had built them up in your head as a person without a disability.

Some parts of #2 are not inherent aspects of disability. For example it isn't fair that it costs more money to raise a kid with a disability. That shouldn't be the case. But the fact that it's not inherent doesn't make it less real for the people for whom it's real. If a person is spending all their money so that their disabled kid can go to school, because public school does not do what the kid needs, it IS harder for them. So, yes. I'm saying it is harder to raise a disabled child.

But that's not the only thing in the world that is hard. And hard is not the same thing as repulsive or tragic.

In Precious, Precious has two kids. She is a young teenager. Her kids are the product of nonconsensual incest. Having kids as a young teenager is really hard. Getting raped by your father isn't just "hard," it is horrible, evil, and tragic. There aren't enough words to describe what it is. It's a lot worse than having a kid with Down Syndrome or any disability.

Now I guess it sounds like I'm on a track of saying Down Syndrome is okay because being raped by your father is worse. That's not my intent. What I'm saying is, Precious has two kids. The second kid she has, who has no disabilities, changes her life. She loves him tremendously, right away, and her love for him gives her the strength to fight back against her abusive mother and seek help. There are other factors that give Precious this motivation; it's not just the baby, it's that she has gotten support from her teacher and classmates. But still, this thing that is very difficult--a baby born to a single teenage mother--ends up being AMAZING. This exact thing happens to girls in real life, sometimes. Situations that are objectively really hard are experienced as wonderful and joyful.

So, harder doesn't equal bad or gross. And I would say that the portrayal of Precious's older child is as something bad and gross. It is totally unrealistic for Precious to have a baby with Down Syndrome. Down Syndrome isn't an inherited condition, it's a genetic mutation, so incest doesn't increase its likelihood. An older mother increases its likelihood, and Precious is very young. I believe that this plot development, which belongs in a sci-fi movie, is just meant to add to the atmosphere of tragedy and gloom around Precious's life so far. She's physically abused! She's sexually abused! She can't read! She's poor! She had a baby and is pregnant again...AND, her kid has DOWN SYNDROME. WORST THING EVER. Quishay is not shown smiling or interacting with Precious and is not filmed in the loving way that her second child, Abdul, is filmed. (It's true that Quishay doesn't live with Precious for most of the movie, but number one, no one forced the writers to write the story that way; and, number two, we could have had shots emphasizing Quishay's cuteness and lovability when Precious gets her back at the end of the movie.)

The movie Precious is hateful to people with Down Syndrome because it uses Down Syndrome as a shortcut to say "Precious's life is horrible." At the beginning of this post I listed two facts about disability. This movie exploits fact #1, nondisabled people's discomfort and revulsion about disability. That is an immoral thing to do. It is incredibly disingenuous to claim that the portrayal of Quishay is somehow legitimate because "it's harder to raise a kid with Down Syndrome." This isn't about difficulty, it's about prejudice and using a disabled child as a horror-movie monster.

I am so tired of this. I call it "the harder fallacy." It sucks because when you're trying to point out that someone is being prejudiced, you get totally knocked off balance by a bogus argument about whether the victim of the prejudice, or their parents, has a hard time. But it's not about that. They're two totally different things.

eta: I'm pretty bad at science, I apologize. Apparently it's not as unlikely as I thought for a teenager to have a baby with Down Syndrome. However, my points about the portrayal of Quishay still stand, and would stand no matter what disability she had.

so awful

In September, Kerry Robertson wasn't allowed to get married to her boyfriend because she's intellectually disabled.

She and her boyfriend, who are Scottish, were told that their baby would be taken away when it was born. When they were told this in November, they went to Ireland in the hopes of being able to keep the baby. Last week, four days after the baby was born, Irish social workers came to the hospital and took the baby away. For the time being, the baby's parents are allowed to see him for two hours a day, until a more final decision is made about whether they can raise the baby or not.

“I know what marriage is. It is when two folks want to spend the rest of their lives together. I love Mark and I want to get married to him.”

"When the Irish social workers said I had to give the baby to them, I felt sick...I didn’t want to hand him over and I started crying because I couldn’t believe what they were saying. I thought I had misunderstood."

"I’ve told the social workers I don’t want him to have bottled milk or a dummy. I feel breastfeeding is so important and at least then he is still having some of me."

They seem to have a supportive family and friends, and besides, the baby has two parents. It's not like Robertson would be raising him all by herself--and even if she was, no one has actually shown that she's irresponsible or lacks the planning or care skills you would need to raise a baby. The way her boyfriend talks about it, it sounds like she organized and kept track of things in terms of going to the doctor while she was pregnant, which isn't something everyone can do. It seems like social services is overfocusing on her diagnosis and not looking at how her disability actually affects her.

College Accessibility for ASD People

When it comes to ASD, the medical model is woefully inadequate.* According to the medical model, some really specific thing (like extra time on a test, or magnifying or screen-reading software) can make the person learn just as well as other students. Even if the professor doesn't believe the student's disability is real, doesn't like the student in particular, or doesn't believe disabled people should be going to college, they can be forced to allow the accommodation. And all is well! Well, not really, if the professor is an asshole, but that's the theory.

But with ASD there is not something you can ask for like this. The professor has to be okay. If the professor dislikes or disrespects a person because the person moves or talks in a nonstandard way, the person is fucked. In my first term of college I had a professor who really disliked me and formed opinions about what I was like because of my way of speaking and talking. I wasn't blameless--I accidentally came late to the first class, and forgot to turn in an assignment (which I had completed; I just forgot to turn it in)--but my professor took my mistakes and combined them with my ASD presentation to create a narrative where I was lazy and didn't care about the class, even though my other actions showed that I did care. He was openly contemptuous to a degree that made me cry, but because I hadn't been a perfect student, I felt like there was nothing I could do. I felt I had to drop the class; this would mean I'd have less than the required amount of credits, but I was too anxious to do the work.

But fortunately, my professor referred to me as "really weird" when he was talking to another student, and she told me what he said. After talking to the head of disability services (more for emotional support than anything else), I confronted my professor. By stating outright that I knew he didn't like me and had insulted me to another student, I was basically able to force him into being nice to me for the rest of the term. He claimed I was imagining his dislike of me and the other student was lying; but I wasn't looking for an apology, just a less terrifying professor.

Hooray! But most professors are not dumb enough to insult a student to another student, so most ASD people in this situation wouldn't have such measurable proof of malice. Also, it was really lucky that he happened to say this to someone I was friendly with. ASD students are probably less likely to be friendly with their classmates, so they'd be less likely to be told that their teacher insulted them. And they'd be less likely to ask their classmates for their opinions on whether the teacher is acting inappropriately. I am super lucky that I didn't have to drop the class.

An ASD student really, really needs professors who can interact with a person who acts different without having a total overreaction. I would say that my school is really accessible to me because (except for that one glaring exception, who has fortunately now retired) most professors don't overreact to my difference.

(*Of course, the medical model is actually woefully inadequate for other disabled students as well. I previously mentioned how my friend was patronized by a professor because he has cerebral palsy. The disability services office can provide him with a notetaker, but not a professor who understands that slurred speech isn't indicative of low intelligence or immaturity.)