14 December, 2023

Revisiting "The School"

For various reasons, I've found myself thinking about ABA. For the past decade I've tried to avoid the subject, but I think any ABA-critical person gets sucked into arguments about it sometimes.

What particularly strikes me is that when ABA proponents defend ABA, they're always moving the goalposts so that abusive and harmful ABA practices don't "count."

"That doesn't happen anymore."-->"Okay, maybe it happened recently, but not that much."-->"Okay, maybe it happens a lot, but not at good centers." "Maybe it happens a lot, and it's called ABA, but it's not real ABA." Etc.

The summer I spent interning at an ABA school in 2009 had such a big effect on my life. I don't think any experience could shown me more plainly the depth of disrespect and contempt that this world has for disabled people, and the extent to which "helpers" can be confident in doing harm.

I wrote many blog posts processing what I saw at the school. One of my posts--They hate you. Yes, you--was shared around in a few places. I never named the school. In my experience, while lots of people write and talk about their experience seeing abuse in an ABA setting (or working in an abusive ABA setting) they usually don't name the school or center.

I don't know about everyone else but in my case, I didn't want the school to find out I'd written about them because I wanted to use them as a reference. Even though it was an awful place, I didn't have much work experience and wanted to list as many things as possible on a resumé. I was 20/21/22 and always worried I wouldn't be hired. From I'm a Juggling Robot, the brilliant ethnography of ABA therapists by Julia Gruson-Wood, I know that it's pretty common for people who work in autism services to hide their critical opinions about ABA to avoid damaging their professional life. Obviously, I didn't hide my critical opinion altogether, but I did protect the school.

Now I am 35 and don't need to list summer internships on a resumé, so it seems worth saying that "The School" was the New York Center for Autism Charter School in Harlem. When I interned there the school was only 3 years old. Now it has been around for 17 years and they have expanded to two schools.

Every few years, I would go on their website and see who was still working there. It's not possible to see school staff, but I did see that some of the staff moved up to leadership roles--including specific people whose abusive actions I described in my post.

They are still working in the field, they have moved up in their jobs, and they have more kids now. They're doing better than they were then. The school doesn't appear to have any self-advocates on their board. Even if they stopped abusing kids, which I highly doubt, they have never apologized or been held accountable.

Why can't people admit that this isn't over? Why do I feel so nervous as I type this, like I'm still, somehow, going to get in trouble?

22 August, 2018

Inaccessibility 2: 2 Menus 2 Furious

I was rereading my Inaccessibility post from last year and just wanted to add some addendums. Sometimes thoughtful waiters at restaurants will bring everyone else a glass of water, and bring Anna water in a disposable cup with a lid and straw.

Your mileage may vary (I can't help thinking of the Deal with Disability post about being brought a sippy cup) but this really warms my heart. I can see that the waiter has noticed Anna, seen that she's severely disabled, thought about what accommodation she might need, and decided to bring this cup, presumably because they know other disabled people who drink out of a cup like this.

However, it's actually a waste of the cup and straw because Anna can't drink out of a straw. She drinks out of an adaptive cup or a squeeze water bottle (which she brings with her). Or, in a pinch, I very messily pour drinks into her mouth out of a glass.

It means a lot to me when people are paying attention and thinking about what a disabled person might need, to the point that I have a very mixed reaction when the disposable cup appears. It's so considerate! But...it's wrong for us. It's nice when staff at our haunts get to know us and know what we need, but if you don't know, it's better to ask.

Also, in the previous post I complained that the waiter didn't bring menus or glasses of water for Anna or her friend "Otter." I realized maybe I should explain why I have a problem with this, as Anna and Otter each bring their own water bottle, may not be able to read menus, and can't order their own food. The waiter was technically correct in judging that they wouldn't drink out of the glasses of water and wouldn't pick up the menus, read them, and order from them. The reason I don't like this is:

1)This assumption is wrong a lot of the time. Somebody may be able to drink out of a glass (maybe with a straw, maybe not); definitely may be able to read their own menu and order for themself; and may still enjoy having and looking at a menu if they can't read or order. Shane Burcaw's blog has some good posts about being treated like a child at restaurants and stores, when he can order for himself.

2)Even if someone MAYBE doesn't need a menu or water, if you normally bring a menu or water for each person at the table, then by automatically bringing 2 menus and 2 glasses for a table of 4 people, you're implying that you only see 2 people at the table. In the general population of "able-bodied" people, some of them have a regular order that they always get, and it's certainly not like two friends would shrivel up and die from sharing a menu. But it's still common to bring everyone a menu. Just bring everyone a menu because everyone is a person. Why.

11 June, 2017


I was meaning to write about experiences I've had in stores and restaurants with my beloved boss Anna. A few things about Anna are relevant to these stories. She uses a wheelchair; she needs help eating; she sometimes impulsively grabs or knocks over things in her field of vision; and she has severe, frequent seizures which require a specific medical protocol.

A person in our situation has a weird line to walk. If I just got really mad about things being inaccessible, it would seem aggressive. Despite accessibility being the law, there's a degree to which people seem to think it is just an extra perk you can add to your business, and actually complaining about inaccessibility is entitled behavior. Also, it seems like if something isn't 100% inaccessible, you're supposed to be happy with that, even if their attempt at accessibility doesn't really work for you.

And you do catch more flies with honey than you do with vinegar etc. But the truth is that if a disabled person can't get into a store or restaurant, isn't treated respectfully when they are there, or has to do a lot of extra work to access the same things as everyone else, this isn't fair and makes it hard to do everyday things.

For me personally, attitudes are more important than physical accessibility. If staff apologize and are willing to help a customer because something's not accessible (for example, bringing them items from a section of the store that the customer can't get into) I am not as bothered. If they act clueless or hostile about how inaccessible their business is, that's when I start to get really irritated.

Anyway, here are some stories.


Anna and I used to go to a certain Walgreens, but it was renovated and the new lift was too small for Anna's wheelchair. She got stuck in the lift while we were trying to go to the second floor of the Walgreens. With help from store staff, she got un-stuck from the lift, but it was clear that we wouldn't be able to get upstairs.

A store staff reassured me this wasn't a problem, because he would get us whatever we wanted from upstairs.

I explained that I wanted to show Anna a few ribbons so that she could choose between them, so I wasn't sure how to pick out what to buy if she couldn't go to the second floor.

"You can go and get them to show to her," he said.

"Hm, I don't want to leave her alone," I said. "Could you go and bring back a few ribbons so she could choose between them?"

"Oh, I can stay with her while you go," he said cheerfully.

(I just want to reiterate that the reason Anna has 24 hour care isn't because she can't stand to ever be alone. It's because she needs help with a lot of things and has seizures. It's not hard to take care of Anna, but it is specific; this random guy would not do as a replacement for me if she had a seizure or needed any kind of help.)

Not knowing how to argue with someone who was not interested in helping me the way I asked, I hurried upstairs, grabbed the first ribbon I saw, and came back as fast as I could. After this, I never brought Anna back to the Walgreens.

Crystal Store

I thought about taking Anna to a crystal store. When we came up to the store, two friendly guys eating at an outdoor café took an interest in Anna. She had a big smile on her face and was very charming. They talked up the store to us, telling us it was really fun. I pushed Anna in down a narrow hall, but then saw that the hall ended in steps.

We came out again. The guys at the café were sad to hear that we weren't able to go in. Then the ladies from the crystal store called after us that they had a ramp they could put over the stairs--they just had to find it. "See, you will be able to go in!" the guys encouragingly said to Anna.

Anna and I waited as the ladies looked for the ramp. When they found it, it was terrifying looking--steep, slippery, and narrow. It didn't seem very stable when they put it over the stairs, and I couldn't bring myself to actually try pushing Anna down it. We left, to the disappointment of our new friends.

Mexican Restaurant

Anna and I were at our favorite taqueria. If I go there by myself, the staff ask, "Where is the girl?"

Where you're supposed to stand in line is organized by ropes. According to Google they're called "crowd control stanchions"--they're, you know, those ropes on poles that show you where you're supposed to wait in a line. Anyway, at the taqueria, the space between the ropes is way too small for Anna's wheelchair to fit. So we couldn't wait in line. There were only a few people in line, so I just awkwardly waited with Anna next to the line.

A lady in the line looked at us. She moved the poles apart at the beginning of the line so that the entrance was wider. "Does this help?" she asked.

"Aw, no, I think we'd be able to get in, but we would just be stuck," I said. It was true--the rest of the line was still very narrow.

A minute later, the lady said, "That table over there is free. You could put her over there while you're in line."

As I've mentioned, I really cannot leave Anna unattended in most places. This sounds overdramatic, but in addition to seizures, there's just the sheer variety of stuff she might be interested in grabbing and knocking over--glasses, tables, bowls of chips, napkins, plants, etc. If I'm looking at her and watching what she's looking at, I can usually get an idea of what things are in danger and need to be moved out of reach, but sometimes I don't see things coming or she changes her mind. The table she was happy to rub her face on a moment before now becomes an enemy that must be shoved away from her as hard as possible, making dishes go flying and stabbing the side of the table into anyone who is sitting across from her and doesn't get out of the way fast enough.

Anyway, if I have to get up while we're sitting at a table together--say to get a straw or something--I go extremely fast and practically walk backwards so I can see if Anna is thinking about wreaking any havoc. This is for, like, a thirty-second trip at the most. The idea that I could wait in line, order food, and pay for it while Anna sits by herself at a table is ludicrous. Sorry Anna but it's true.

Not really knowing what to say to the lady, I gave the non-response of, "Yes, that looks like a nice table. I think that's where we will sit after we get our food."

Other Mexican Restaurant

I was very excited because we'd made plans to go to this restaurant with our friends "Otter" (another severely disabled lady) and "Penguin" (Otter's aide). I'd always wanted to take Anna there because it has an extensive menu and ornate decorations that I thought she would enjoy looking at. I'd worried because it is crowded at times, but I'd done my research and concluded that if we went there for a late lunch instead of dinner, it wouldn't be crowded at all. This would be nice because the four of us take up a lot of space at a table, both because of wheelchairs, and because I sometimes sit Anna next to the table instead of at the table so she won't push the table into Otter and Penguin.

When Anna and I came in, I explained to the waiter that we were waiting for two friends, one of whom was also in a wheelchair. He drooped with unhappiness and repeated, "Two wheelchairs?" like he was saying, "Two chupacabras?" Having one chupacabra in your restaurant is bad enough! "Well...I'll have to set you up in the back," he said. "There's nowhere else that will work."

(Looking around the restaurant, I saw other tables that would work, but I didn't press the issue. I think he was partly laboring under the delusion that everyone in a wheelchair wants to sit at the table. I know many people, like Anna for example, who don't have to sit at the table when they eat. I also know some people who can't sit at the table when they eat because they lean back in their chair and their aide feeds them standing up. I really wish restaurant staff would not try to choose or set up a table for wheelchair users without finding out what the person actually needs.)

Otter and Penguin arrived and I pushed Anna a little further into the restaurant to make room for them. "You'll have to wait!" the waiter admonished me. "I have to set up the table!" (As predicted, the restaurant was almost empty, and no one was eating in the section where Anna and I were.)

It turned out that setting up the table just involved removing a few chairs from the table and a few barstools from the bar. But I wasn't sure I'd be able to feed Anna if she sat where the waiter was planning for her to sit. "She needs to sit there," he said. "There's nowhere else she will fit." I ended up being able to move the remaining chairs and barstools around to get her into a better place.

Then, the following things happened, some of which I wouldn't have cared about if they hadn't all happened in combination:

1. The waiter only brought menus for Penguin and me.

2. He only brought glasses of water for Penguin and me. Then he asked us if he should bring water for Otter and Anna.

3. Penguin: How big are the meat strips in the chicken or steak quesadilla?
Waiter: This big.
Penguin: Then [Otter] will have chicken strips.
Waiter: The chicken strips are just as big as the steak strips.
Penguin: Yes, but chicken will be easier for her to chew.
Waiter: Okay, but you should probably still cut them up into smaller pieces.
Penguin: Yes, I will.

4. Otter and Anna are not dainty eaters. They have motor issues! Plus, Otter loves food. She once picked up an entire omelet in her hands and started feeding it to herself like you would feed a carrot to a horse, while ham and cheese fell out the back of the omelet and trickled down her shirt. That is just Otter's way. Penguin and I always have a lot of napkins handy to catch food and wipe our bosses' faces, hands, and clothes. There just isn't any amount of thriftiness that would make us not need all of these napkins, if we don't want Anna and Otter to be wearing their lunch.

Anyway, Penguin asked the waiter for "a stack of napkins."

He said very sternly, "I can bring you a few napkins, but I can't bring you a stack of napkins. We're trying to conserve."

He brought us three napkins. Fortunately, we had both collected unused napkins from a previous lunch for a situation just like this one.

5. I ordered a quesadilla for Anna and me to share. She eats slowly, so by the time she was done, Penguin and Otter had both finished their food. I hadn't eaten anything yet because I had been feeding Anna. I was about to start eating my half of the quesadilla when the waiter appeared and asked if I wanted to put it in a box. I was startled. "No, I'm going to eat it!"

"Really?" he said. "Well...to be determined, I guess." He went away again.

(Again, barely anyone was in the restaurant--we weren't taking up anyone's table with our slow eating.)

I'm not sure I can fully explain my gripe with #3 and #5, but all in all this is one of the most unfriendly experiences I've had in a restaurant with Anna. A stack of napkins! Quelle horreur!

13 March, 2016

Why nursing homes are hellish places

I just found something I wrote last year and thought it was worth posting. Warning: it's very dark!

Nursing homes are hellish places. I can’t speak for every nursing home in the world. I worked in one for 8 months, have been in a few other ones (training, working with clients who lived in nursing homes, etc.), and have been a support worker in various other settings (some of these things are also true in those settings). I think there’s a system in place that causes residents of nursing homes to often be in hellish situations–treated roughly, severely physically neglected, and denied kindness, respect, and freedom at a time in their lives that is likely to be very confusing and painful.

The people who appear to be responsible for this are the staff who work directly with the residents–the aides and charge nurses (LVNs). And these are the easiest people to blame when something bad happens, like a resident getting injured or sick due to neglect. Not only does it seem to be the aide or LVN’s fault, but they’re often from marginalized groups–poor, women, immigrants, POC–so it’s easier for higher ups to project something negative on them. They weren’t empathetic, they’re not kind, they were too lazy to take care of their resident. Due to language or cultural barriers, the aide may not be able to present themselves in the best light or make the best impression. It also is easier to fire or punish this person than to change the system.

However, what’s actually happening is that they’re put in an impossible situation.

They’re paid very little, and aside from the obvious stresses and difficulties of being poor, they may be doing things like picking up extra shifts–so, like, working 24 hours in a row. They might be trying to raise kids, work another job, or be in school at the same time so they may not be sleeping much or at all. Obviously, all this stuff affects how functional someone is and how fast/well they can work.

But there’s the other thing which is that too much work is assigned. Like, when I worked at a nursing home, the minimum required ratio at night was 1 aide to 24 residents. (Often it was like thirtysomething residents–but since that wasn’t actually legal I won’t talk about that.)

So, let’s say 12 of these people aren’t continent and are supposed to be changed every 2 hours, let’s say changing & cleaning someone takes 10 minutes. (Which I’m absolutely sure someone who doesn’t know anything about it would say is SO much longer than it really takes! You should be able to do it in 5 minutes! But also it’s against the law to have diapers and wipes out and visible on a table in someone’s room, they should be away in a drawer. But you should be able to do it in 5 minutes even though you might have to change the person’s bed and clothes. Well…I’m saying 10 minutes. Sorry.)

Anyway, doing that job already takes 2 hours. But also there’s helping people who put on their call light asking for help getting to the bathroom, or for a glass of water or something. So let’s say 3 people do that, the water takes 5 minutes. One person goes to the bathroom and back in 5 minutes. The other person goes to the bathroom and sits there for a long time–you’re supposed to stay with this person because they are a fall risk. (You are responsible if you leave them alone and they fall.) So the whole trip takes 15 minutes. Now we’re at 2 hours and 25 minutes.

Also, someone is confused and is getting out of bed, walking up and down the hall, and walking into other people’s rooms and touching them, which is scaring those people. You realize this is going on, so you go and convince that person to go back to bed. This takes 10 minutes. (Also, the LVN finally comes on the hall–you haven’t seen her all night–and wants to drug the person to keep them from getting up, which I’m pretty sure is illegal, and is definitely a horrible thing to do. But maybe you can see where this kind of decision is coming from.)

We are now at 2 hours and 35 minutes for what was supposed to be 2 hours of work, and our hypothetical self is working without ever taking a break or going to the bathroom or anything. Also, I forgot that you’re supposed to be filling out this computerized chart of what everyone ate and if anyone went to the bathroom, and if so, how much, etc. I don’t really remember how long this takes overall, but let’s say that you do it for 20 minutes during this “2 hour period.” So we’re basically at 3 hours. You are working at a speed that isn’t realistic; you’re also probably exhausted because of your life circumstances that I mentioned earlier; and you are 1 hour behind in your work.

Oh, by the way, pain: getting the nurse (who is stressed & busy) and trying to get her to give a pain pill to someone who is screaming in pain. And, by the way, emotional pain, just kidding. Like, someone is terrified, or miserable. That person is crying. You’d like to go and talk to them and keep them company. Just kidding, it’s 3 people. You’d like to go talk to these people. But you can’t talk to any of them, you don’t have time. But you go talk to one of them.

Then, you hear an alarm going off, indicating that someone who’s a fall risk is walking around, but you’re pretty sure it’s someone who, while she’s technically a fall risk, is always getting up and walking around by herself, but she never falls. So you keep talking to this person who’s upset. The other person falls and is seriously injured. Also, you’re in a lot of trouble.

Basically, the actual circumstances of the job encourage you to not care about people at all–to do a half assed job with the physical act of taking care of people (not cleaning them very well when you change them; just throwing random clothes on them; not brushing their teeth; transferring people in a very fast brusque way that is physically uncomfortable for them), never mind their actual preferences (you’ll help them get to the bathroom when YOU can carve out the time to do that) or God forbid their FEELINGS (how could you possibly have time to just sit and talk with someone?). The job is SET UP LIKE THIS because the workload is not realistic. Meanwhile, the higher ups expect you to get all your work done, AND the things they officially ask of you are like, to be gentle and polite and respect people’s preferences.

So if the aide doesn’t get their work done or is short with people, the higher ups are like, oh they’re a bad aide. (To be clear, I obviously don’t understand why someone would speak cruelly to an old person they’re taking care of. I do understand neglect and roughness in this context–the former of which especially can be really dangerous.)

And the higher ups maybe aren’t evil. I’ve never been one. But when I was an aide, the nurse manager was this very soft spoken lady who seemed very sweet and caring (btw she also came off kind of upper class and seemed to find the working class aides rude and uncaring and stuff) but like…at best, she just didn’t get it! And I’m guessing that the further away you get from the actual situation, the less you get it. And those are the people who set the job up.

01 February, 2016

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.

22 January, 2016

I wrote a great letter to the New Yorker

In Steven Shapin's review of In a Different Key, he claims that Autistic children's eyes "are not windows to their souls, but black mirrors." Actually, I'm Autistic and since I was a child, I've had completely ordinary-looking eyes--irises, pupils, and so on. I've known a lot of Autistic kids and adults, and I can testify that none of us have black mirrors for eyes.

Some people don't do much communication through eye gaze, which is presumably what Shapin meant. Many Autistic people don't make eye contact because it hurts us. Blind people don't make eye contact because they cannot see. Some people with other disabilities (like Parkinson's disease) cannot control the motions of their eyes. I've met all kinds of people who don't make eye contact, but I've never met anyone whose eyes I would describe as black mirrors. It sounds like something out of a horror movie.

Now, this is some figurative language, so maybe I'm missing the point. I'm Autistic, after all. But I think and think about this phrase, and all I see is some very negative, dehumanizing language aimed at children with a developmental disability. In an article that contains several pieces of misinformation about Autistic people, "black mirrors" is the icing on the cake.

22 December, 2015

Uncanny Valley Blues

This is just a vent with no political or artistic import. Here I sit, watching my boss's dad Richard wait on the phone with Covered California, the Obamacare organization. For the last few years Richard has occupied the thankless position of being my unpaid, uncredited support worker in matters of bureaucracy. I can't manage them myself due to difficulties using phones, approaching long chains of tasks, and regulating emotions (i.e. when under a lot of stress I usually zone out and can't do much).

Medi-Cal (Medicaid in California) has decided to occupy themselves this holiday season by mailing me some forms and demanding that I complete them in a week or else. Now, I certainly am unable to do this--they're requesting tons of things that would each individually be something I could only do on the best of all possible days. I guess Richard could theoretically do it if it was an emergency, but it wouldn't be very realistic for him either since he has plenty of things to manage aside from tracking down copies of every insurance check I've mailed in the past year.

But aside from the general obnoxiousness, there's the small detail that I am not on Medi-Cal, nor have I applied for it. I exceed the maximum income limit, and I never seriously considered applying for it even when I made less money. Well, I thought about the disabled workers program, but then an Autistic friend applied for it and was denied for not having an intellectual disability, which is pretty much like telling someone they're not blind because they can hear. After that happened to her, I wasn't going to bother. That was years ago.

But for some reason I'm hearing from Medi-Cal because they want to evaluate me, even though I make too much money and they already have that information without me, i.e. Richard, doing any of this busywork they've assigned. After Richard sits on the phone with them forever, we find out that they sent me all these forms because I said I was disabled when signing up for insurance.

Let's review: according to the ADA, a disability is a physical or mental impairment that limits a major life activity. Check. My disability is also on the list of disabilities that can qualify you for disability if you cannot work, the working disabled program if you can, a disability bus fare, and so on. I've been diagnosed with autism twice and I have the paperwork. I'm not applying for any of these things, though, like I said, since I am not eligible for most of them and when it comes to other ones, like free bus fare, it would be a lot of work to pour into something that I might not get. But. I am, objectively, disabled.

A few years ago I used to get upset about the fact that I'm unlikely to ever qualify for any services for my disability. I'd get upset because of the practicalities--I have to recruit other people to unofficially help me, which is difficult for many reasons, not least because of aspects of my disability--but mostly because it was extremely overwhelming and distressing to feel like the reality of my life was being dismissed. I stopped talking and writing about this not because the situation or my feelings improved, but because I realized it was not helpful to dwell on something that made me so upset. Besides, I'm really lucky to have so many helpful people in my life, and that's what I should focus on.

And when it comes to Medi-Cal, I do not want it because I don't need it. I hadn't been at all surprised when the Covered California website said I wasn't eligible. That was the end of it. But apparently, a disabled person who isn't eligible for Medi-Cal isn't even allowed to exist and to just answer yes on a form that asks if I am disabled, just as I enter other information about myself like my gender and race. Instead, I have to be badgered with tasks I cannot even do for having the gumption to identify as disabled when the healthcare system doesn't consider me to be so.