The Softer Side of Searing

The New Yorker has been kind enough to publish my letter, where I point out that Autistic kids don't have black mirrors for eyes. (Their version // my initial version.) I really appreciate them doing this because I hope it will make their readers consider the effects of dehumanizing language. I don't refer to my hurt feelings, but to the way people may behave after being exposed again and again to the idea that Autistic kids are bad tempered, bad to be around, and different to the point of being inhuman.

I also hope that the wording of my letter will remind people that autism is just one of the many disabilities that exist. I feel this is an important thing to remember, both for Autistic people's benefit and for the benefit of people with other disabilities.

When the New Yorker first edited my letter, I didn't like some of the changes they made. I worried that they would not publish my letter if I argued, but the Letters Editor was very nice and accommodated the 3 requests that I had.

However, I want to point something out. I summarized the black mirrors quote this way:

Shapin claims that Autistic children's eyes "are not windows to their souls, but black mirrors."

The New Yorker wanted to change it to:

Shapin mentions the struggle of parents whose autistic children’s eyes "are not windows to their souls, but black mirrors."

My original letter did not mention parents at all, nor did it need to. It was only about a 9-word phrase describing Autistic kids' eyes. Knowing that this phrase appeared in a sentence about parents does not explain or excuse it. It is just as bad to write, "Autism parents suffer because their kids have black mirrors for eyes," as, "Autistic kids have black mirrors for eyes"--and for the purposes of my letter, I don't see the value of one over the other.

I explained why I did not agree with the edit--"Bringing up parents' 'struggle,' when it's not relevant to my point, is something that I don't agree with because I think media discussions of autism are already biased toward the experiences of parents. (Of course their experiences are important; they are just not the only perspective, and they're often treated that way.) That line doesn't represent how I would write."

It's a bad habit the media has when discussing autism--always inserting the perspective of parents, whether or not there is a reason to do so.  I've read a lot of great deconstructions of this by Autistic people, but my favorite is Zoe's parody article from a few years ago, Person With Autism Manages to Do Something:

How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.

Anyway, I suggested that if the editor wanted to provide context, it would be better to quote more of the review. Now the letter includes the entire sentence that the black mirrors line is from:

It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.

This edit is okay with me, but does have an unfortunate result. My letter begins with this quote, but only talks about black mirrors--giving the impression that there's nothing to say about the rest of this quote. However, it's actually pretty awful from beginning to end. I just decided to write in about "black mirrors" because it was the most obviously wrong and offensive part of the sentence, and I felt I could write something very short about it.

I want to address the rest of the sentence, though, except for the part about the "searing experience." If people feel "seared" by having Autistic kids, I can't argue with that--it's how they feel. I feel "seared" by reading that it's "searing" to have a kid like me--and that's how I feel. If feelings can't be criticized, it's a tie. However, I can and will criticize the list of reasons that Autistic kids are "searing."

After "black mirrors," what stuck out to me is the self harm--specifically the construction, "It's a searing experience to have a child who self-harms." I'm afraid that this is such a common construction, when writing about autism, that it's not obvious what is wrong with this picture. Imagine the following description of a violent accident:

Kendra, a kindergarten teacher, slipped on the steps of her house; she fell and cracked her head open on the sidewalk. It was very upsetting to all the people on the street to see Kendra lying there. Kendra's husband fell into a deep depression, unable to deal with what had happened. Kendra's students were very distressed when she could not come back to work because of her brain injury.

Hopefully this example gets the point across. Everyone has good reason to be seriously affected by Kendra's accident, especially her husband. But we don't expect to have their perspectives emphasized to the point that they entirely drown out Kendra's perspective of her situation. Her physical condition is only described in terms of its effect on others, and her feelings aren't described at all.

That is just a ridiculous way to describe something bad happening to Kendra--because first and foremost, it happens to Kendra. It does not happen to the people around her, no matter how much they love her. I can't speak to every person's experience of self harm, but in my experience it feels pretty bad internally--and physically, of course, it hurts a lot. No one else's reaction to self-harm is as "searing" as being in that situation yourself. To frame a child self injuring in terms of how someone else feels about it is unbelievably unempathetic to the child; and when it happens over and over in the media to the point of being unremarkable, that is really disturbing.

However, as I read the multi-faceted "searing" quote again and again, what stands out the most is the implication that autism is volitional--that Autistic children are being Autistic on purpose, just to torture the people around them. I addressed this idea a few years ago in my post Behavior vs. Ability. I was saying that those who are more empathetic to a disabled person will usually see the person's actions/inactions in terms of what they are not able to do, the fact that they may have to do things in alternate ways, and that they are trying to cope. On the other hand, there's the colder view that the actions are all there is--the person "prefers to do this," "refuses to do that." No reason is given, and no acknowledgment is given to the idea that a reason might exist. The person is just being bad.

It's subtle. But look what Shapin says:

a child who doesn’t talk

Why not "a child who can't talk?" Does Shapin mean to say that kids who can't talk are just refusing to talk? Does he really believe they can talk?

a child who demands a regularity and an order that parents can’t supply

Why not "a child who needs a regularity and an order that parents can't supply?" I doubt the child is drawing up a contract of "demands" like a rock band demanding green M&Ms in their rider. The child is upset when things aren't regular and orderly. The child is struggling, not "demanding" things.

(Imagine if the New Yorker had wanted to edit my letter to discuss "the struggles of children with black mirrors for eyes" instead of "the struggles of parents who have children with black mirrors for eyes." It's really too bad how surprising that would be.)

And how come the child "doesn't" talk, but the parents "can't" supply order? Why not say "the parents refuse to supply the order the child needs?" Because Shapin has empathy for the parents and understands there are things they can't do--but the child is just a mirror-eyed cipher.

Well, I'm just spitballing here--I don't want to go point by point through the whole sentence and edit everything to make it sound more like the child is in fact disabled--not "demanding" the things they need to function, not refusing to talk to "sear" their parents, not self-harming just for the hell of it. At that point, the sentence would no longer be as damaging to Autistic kids, but it still wouldn't be very good. ("This is the worst writing I've ever seen in the New Yorker," was my mom's comment, although her judgment may have been affected by all that searing I did to her.)

Anyway, I just wanted to give the searing sentence a more thorough look, and now I'll shuffle off with 2 boring postscripts:

1. I want to be very clear that I was not offended by the idea that Autistic kids' eyes look black, or that they look different from other people's eyes. I was offended by the context and implications. I don't like the resemblance to the Black-Eyed Children urban legend and to the purely black eyes (including black sclera) in a lot of ghost/alien/monster characters in movies and TV. I don't like the idea that our body parts aren't flesh but metal, or the idea of us having "nothing behind our eyes" where other people have souls.

However, lots of people do have glass eyes, metal spines, and so on. There's nothing supernatural about that either. When I jump on this quote like, "How dare you say this!" it is NOT because I think there's something horrific or monstrous about anybody who really has glass eyes, has very different looking eyes (no pupils, etc.), or doesn't have any eyes at all. It is because of the context and the tropes it's drawing on. And while the insult was specifically aimed at Autistic people, I don't think it does blind people any favors either to talk in such a weirdly tragifying, spooky way about eyes that look different, or eyes that do not focus and make eye contact.

2. It's hardly worth responding to, but Shapin says some really false and insulting things about the neurodiversity or Autistic self advocacy movement. I assume these are regurgitated from the book. For a smart and clear self advocate response to In a Different Key, that explains exactly how untrue these assertions are, I recommend Ari Ne'eman's review.

Services

Liebjabberings was curious about what kind of services I'm thinking about when I complain about people like me not getting services. I actually have never thought about this much because I know I won't ever get them, but I got interested in thinking about what they would look like.

A main thing I'd need is direction to work on the non-urgent things I mentioned in a post a few months ago. In that post, I discussed how I'm usually able to get myself to get up, commute, work, eat, and occasionally shower, but it's too hard to do anything else and that creates problems for me.

So for me, that could be meeting with a support worker and the worker could list things most people do, like getting haircuts, regularly going to the doctor, etc. and I could say if that's something I want. I could also add other goals that aren't on the list, like getting new curtains (random example).

If there are things that could be done with the worker in the short term the worker could just walk me through those things and/or do them for me. It might not be realistic for the person to actually go with me to get new curtains and stuff, so I think the way they would help me with something that takes place over multiple days would be to schedule with me exactly when I would do it and maybe check in with me by text to see if I'm able to do it.

A big problem for me is dealing with food. I usually don't prepare food for myself because it's too much work, especially when I'm feeling foggy and tired which I usually am at night. The main reason I have trouble paying my rent is because I don't really have enough money to get takeout or junk food that much, but I do it a lot.

I think there are a few possible ways this could be dealt with:

1. A worker comes to cook for me.
2. A worker comes to supervise me while I cook, or doesn't always supervise me in person but we spend a lot of time deciding things I could cook and planning what I will cook every day for the next week. I think this could make things seem a little easier but without actually doing it, it's hard to be sure whether I'd consistently cook for myself if I had more guidance.
3. I could be given more money so it doesn't affect me badly to get takeout or go to a restaurant instead of cooking for myself.
4. I could somehow get a meal plan at a college cafeteria--this would be nice because I wouldn't have to do dishes, but the obvious problem is that I'd have to go somewhere else to eat and that could be kind of inconvenient. It also would probably cost more money.

I'm not really sure which of these options would work but the short version is I would want some help with food.

Another thing I would want is someone to advocate for me and help me advocate for myself. I have a lot of trouble saying no and I also have a huge block on talking about my problems with fatigue or telling people when I'm sick or having a dissociative episode or haven't slept, or basically anything that makes it harder for me to do stuff. The reason this creates problems for me is because I can't call in to work if I am not doing well because I can't talk about what's going on. I also have trouble because one of the agencies I work for will sometimes ask me to work extra hours when it's not really healthy for me to do that; recently I've been trying to deal with that by not answering their calls and being so difficult to schedule when I do accept a job that they end up not giving me the job. I really don't like treating people this way but I feel like I don't have a choice.

So the short version with that is I would like someone that I can trust to support me when I'm saying I shouldn't go to work, work extra hours, etc., even if it's hard for me to articulate why and the person has to work to understand what's going on; and I would like the person to also be someone who can call in for me and also help me learn more about how to talk about this stuff better so that I don't have to go to work when I'm sick.

I'm not actually 100% sure if these things would make me have more energy/cognitive function and be able to do more "fun" things. Maybe I just don't have that much energy/cf and the only way I could pursue fun activities would be if I did not have to work. But I like my job, so that isn't something I would want.

I think that even if these things didn't make me able to do more they would improve my quality of life and my health a lot.

Also if you don't understand about timers

Something that I find tough is that I don't really know how to describe the daily effects of my disability to people and the only way I feel like I can do it is by just showing people or telling people about things that I need to do to function.

The problem is, it seems like a lot of people can't extrapolate what's going on from what I show them, and some people's only reaction to me saying, "See, I have to do this to do this" is to encourage me to do something that is a more common way of dealing with things. I wish people could try to understand what I'm like by seeing that I have to write things on my hands and my computer so I can always see them, but it seems like most people just look at this strategy and see a problem and try to tell me that I should write stuff in a special book (which it would be harder for me to use because it would take more memory and energy to check what it says).

Writing on myself particularly is something that people have always been kind of distressed about and the only reason I can see for this is a bunch of negative associations that are clearly associated with disability. People usually see it as something that looks bad because it clearly indicates that someone has thinking and memory problems, but when I was growing up I was also told that I shouldn't do it because it would imply that I'm the kind of person who would self injure.

It's not really an issue for me that someone might think I have problems with my memory or self-injury because those things are true and I don't think that indicates anything bad about me.

But anyway, I just really wish that people could understand what's wrong with me just by looking at things I have to do, but if I can't even explain to other people what's wrong with me then I guess it's not really fair to expect them to figure it out when I can't.

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.