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.

when loving your enemies is hating yourself

Some more about the stuff the other day.

I think having compassion or trying to understand someone's point of view is a luxury.  Well, luxury is the wrong word but I mean it should never be your first priority in a conflict.  Other things are more important, and compassion/seeing other people's point of view should only be attempted if other things are there first.

Lia left this comment on my pop culture blog where I had reviewed a glurgey YA novel about bullying:

"i can say this as someone who often tries to cope with things by being sort of detached but also outwardly optimistic and upbeat even if i'm not really feeling that way, it's not actually desirable or emotionally healthy to react to everything that way. a person who acts like that in response to bullying in real life is still going to be affected by the bullying, but they're more likely to turn their feelings about it inward on themselves. instead of (rightly) getting angry at the bullies, they might get angry at themselves for being bullied, for being unable to stop the bullying, and for being angry/upset about anything in the first place. sometimes these are people who have been taught, or have decided, that it's morally wrong to feel or express negative emotions. sometimes these are people who can react really calmly to being mistreated because they are very used to it and honestly believe that they deserve it or that it's normal. and that's less inspiring than it is depressing."

Lia is pretty stellar.

My mom has been visiting me and tonight we were having dinner with the family I work for.  We got on the subject of different illnesses and injuries I had when I was a kid and how usually people did not realize what was going on because I didn't have the level of distress they were expecting.

Not having enough visible distress is something I really hate about my life, to the extent that I've always assumed it was some kind of trauma reaction.  There's not really a ton of evidence for this so it might just be that I'm projecting/imagining that because it has been such a bad experience for me.  It's obviously been going on since I was really little so the list of possible traumas is pretty narrow and it's nothing obvious.  Also, it is a common problem for people with autism so it's either that it results from a traumatic experience that a lot of us have, or it just is part of autism.

In addition to less visible distress I also have more trouble noticing and identifying my feelings than other people do.  To make things even more annoying, I sometimes develop obsessive fears about having certain feelings and because my feelings aren't very concrete to me in the first place it can be really easy for me to get convinced that I'm really feeling those things just because I'm worrying about feeling them.

I really confused someone recently by talking about how far I'll go to avoid situations where someone downplays my disability or refuses me services.  I basically have chosen not to ever pursue any kind of services because if I was not able to get them, I would get too upset, and to me that's more important than a chance to get help I need.

I guess it doesn't make that much sense to other people why it affects me so much if someone doesn't think I have a significant disability*, even if the person isn't a close friend or someone who has a lot of power over me.  The reason it affects me is that I don't feel secure/distinct about my disability but it's very important for me to know that I'm disabled in order to manage and cope with my life.  I surround myself with people who either support this, or don't talk about it.  If someone says that I don't have a significant disability then that idea is introduced to my brain and even if I know the person isn't that smart or doesn't know me that well, it introduces a lot of doubt and I start seeing myself as a liar and a faker and can become suicidal or otherwise be affected in my day to day life.

*(I know some people use the term "significant disability" to mean a "profound" disability like my boss has, but I'm literally using it to mean a disability that is significant, i.e. it affects my daily life in a lot of major ways even though I can work, talk, etc.)

If someone says I'm not disabled or says something else that demonstrably isn't true, but would be threatening to my quality of life if I believed it (for example, saying that the family I work for hates me), I immediately want to remove myself from that person and see them as an enemy.  I don't want to engage with the person about this or even think to myself about why they think what they do or why they said it to me.  If I think about it too much, I will definitely start believing it so I just have to be brief and rational--it's not true, they were wrong, it's a harmful idea, and I'm rejecting it and the person who introduced it.

By the way this can be pretty unfair because someone who is perfectly nice might just make some uninformed statements about my disability or something else, and they might even see their mistake if I just talked to them about it, but I can't talk to them because I can't risk being convinced by them.  If I did talk to them, it would be very brusque to just give them the information about why they're wrong in case they want to think about it, and then end the conversation.  I probably wouldn't do this with most people, because it obviously seems mean and hurtful, but it's the only way that I would be able to engage without potentially hurting myself.

I'm going a bit off track here--the original thing I was thinking about was being secure in knowing when someone has hurt you, and being secure in the idea that it's wrong for someone to hurt you.  Some people are secure in this and some aren't including me.  In my opinion, if you are like this and immediately attempt compassion (or you encourage someone like this to immediately attempt compassion), what is really happening is that the person could hurt themselves.

For example, let's say Emma and Shirley work together.  Emma is very brusque with Shirley, makes fun of the way she walks, talks, and looks, never thanks her for anything she does, and is patronizing.  Shirley is hurt by the way Emma acts and finds it to be insulting.  She doesn't like Emma because of it.  Shirley decides to try to see the good in Emma and treat her well even though she doesn't like her.

On the other hand, let's say Shirley never gets to the point of being insulted and not liking Emma, even though Emma is treating her disrespectfully.  Trying to be compassionate, Shirley always makes excuses for Emma or tries to think of reasons that she has done something wrong to provoke Emma or reasons that she is wrong to be upset by the way Emma acts.  When Shirley has negative feelings toward Emma she tries hard to make herself feel the opposite and see Emma in the most complimentary light.  Shirley works so hard to be nice to Emma that she comes off like she particularly likes her, even though Emma is extremely rude.  I have been in this situation a few times and I think it damages me when instead of focusing on seeing that someone is treating me badly, I focus on seeing the good in them.

I have to assume that most people (or at least people who have tried to encourage me to be more compassionate/educational/thinking about other people's feelings) take it for granted that they will see it as wrong for someone to hurt them and that nothing can change that.  Then when they talk about compassion, maybe it's like they're skipping the foundation that should be in place; they always have it so they barely notice it and don't mention it.  But to me, because the foundation isn't there, they're advocating something quite different.

Without the foundation, loving your enemies is just hating yourself.

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It seems like it's socially acceptable for "liberal" parents to say things like, "This is hard for me, I need time" as an excuse for saying offensive or hurtful things to their kids who are queer or transgender, and generally not making an effort to support them.  For some reason, this functions as a get out of jail free card to keep the parents from being seen as prejudiced or a bad parent, and I don't really think that is okay.

It's harder to actually belong to a marginalized group than it is to have your kid not turn out the way you were expecting.  Queer and trans people shouldn't have to deal with our parents being insulting and unhelpful on top of other things we have to deal with, and we definitely shouldn't be expected to act calm and patient when they're not even acting like parents.

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There's something I think about when I see parents of disabled kids fussing about how disabled people should be more tolerant of murder or whatever other crappy things parents want to do. What I think about it is not going to change the mind of that kind of person, but it's still something I think about.

I am never going to be able to spend a single second of my life away from a disabled person and I am never going to be able to spend a second not thinking about how to manage my disability. I didn't get to spend the first few decades of my life without a disability. I don't get to walk out of the room away from the disabled person who I am the only caregiver for. I don't get to send the person to respite so I can get a break.

Yes of course it can still be tough and a lot of work to take care of someone, even if you can walk out of the room and take a break for a few hours or even for months or a year. But I don't need to put myself in a parent's shoes, because I've been doing it longer and harder.

Official Reactions

(Notes: This post contains references, mostly nominal, to a few things that trigger a lot of people, particularly violence, meat eating, and “national tragedies.” It’s not a very “tight” post because I am trying to explore some ideas I’m not sure about. It’s also very US-centric and I don’t know if people act this way in other countries. Finally, I am not a trauma survivor.)

Is a horrified reaction to images of violence more important than your efforts against violence?

I believe it’s not.

It seems to me like people’s reaction to the sight of violence or graphic descriptions of violence is held up as a higher indicator of their ethics than anything they actually are doing or think. Really, it either indicates who they are emotionally or their willingness to conform to standards of appropriate behavior.

For example, I knew a guy who, when a scene of male on female rape appeared in a movie or TV show, would comment, “It’s so hard for me to watch things like this,” but not in the context of asking for it to be turned off. Obviously there’s nothing wrong with him feeling that way, but it seems like rather than just avoiding things they cannot watch, people announce that they can’t watch something as though other people need to know this, and they sometimes even continue watching.

It’s really not worth mentioning except for practical purposes. First of all, despite the common performance of not being able to handle certain images of fictional or nonfictional violence, images like violent murder mysteries, slasher movies, and “true crime” books and TV shows are very popular. If people really couldn’t stand to hear or think about violent events, then they wouldn’t be reported on over and over.

On the subject of things that are reported on over and over, I think it’s disingenuous for people to act severely personally affected by 9/11 when they are not from New York, didn’t lose anyone, and didn’t have mental health problems focused on the event. Sorry to be so blunt but I don’t see the reasoning for someone from California or Utah thinking that they can claim 9/11 as a universal American experience. It didn’t happen to them and it’s just a symptom of the idea that we have to perform the official reactions instead of our own.

Similarly, when “a nation mourns” or “a nation’s heart breaks” because of a mass murder, you can count me out. Any reaction that I have to hearing about people being murdered is personal, not national, and I also know that there are many more people who I don’t hear about because their deaths aren’t considered tragic in the right way. It’s more important to me to think about how murders can be prevented than it is to pretend my heart is broken by something unrelated to me.

I’m pretty self conscious writing this because it’s probably the most stereotypically autistic thing I’ve ever said. It would be really easy for someone to say that I feel this way because I don’t have empathy or don’t understand the emotions most people have. But I obviously can’t convince someone otherwise if they choose to perceive me that way. The truth is this performance of discomfort and grief bothers me because I think it accomplishes the opposite of what’s necessary to make the world better.

First of all, it alienates the people who should be supported the most. If someone is very familiar with violence or abuse, they might be used to “horrific” stories and images. They might not react to them with obvious distress. When they hear about a violent crime, they might immediately start thinking about how to prevent similar crimes, instead of expressing grief. They might make jokes about abuse or speak about it bluntly. People who act this way are treated like they’re insensitive, inappropriate, and tasteless. I’m not saying that everyone needs to emulate them, but it’s a problem when people who are actually survivors, and/or are working tirelessly to end violence, can be perceived as not caring about violence because they don’t have the same reaction as people who are less involved.

On the other hand, some people who have survived violence are very distressed by images and stories of violence. To some extent, other people will be sympathetic to the needs of a person like this. If someone survived a school shooting and has panic attacks when he sees school shooting related images, people in his life might respect that and not show him a movie or TV show with a school shooting. But this accommodation might be allowed more because he’s seen as a broken victim who needs to be taken care of, than because people think his reaction is reasonable.

If he acts too angry and “entitled” about his triggers-- “What the fuck is wrong with you? You saw this movie before but still told me it was okay to watch it!”--then he’s “taking it too far.” People generally think of someone who has serious reactions to triggers as a person who needs an unfair amount of support. He shouldn’t act like it’s his right for people to be sensitive to his triggers. If his trauma is less impressive--if it was a long time ago or what happened isn’t quite shocking enough, or God forbid he even refused to disclose it--then people see him as even more unreasonable and spoiled.

And even if they respect his feelings, he’s still an outsider in a discussion of school shootings, because his experience is so different from the average person’s and for some reason, the average experience is the most important.

I haven’t thought of this since I was 12, but immediately after 9/11 my school chorus began to prepare for a 9/11 tribute assembly where we would sing patriotic and inspirational songs. We were far enough from the city that only one student at my school, “Lauren,” had lost a parent. On the day of the assembly I heard another girl ask a teacher: “But what about Lauren?”

“Don’t worry, I’m sure she won’t have to go to the assembly,” the teacher said.

I remember thinking how weird it was for us to be having this assembly--presumably to show we cared about 9/11--when it seemed likely to upset the person at school who was most affected by 9/11. It should be obvious that vague communal responses to “tragedy” are not centered around the people who are most affected, but on the emotions of people further away. If not, why are the emotions of survivors inappropriate, insensitive, unhealthy, or, at best, the “special needs” of a minority who must be accommodated?

I think the fetishizing of the emotional-but-shallow reaction encourages unethical behavior. I’m not trying to pick on people who eat meat (I eat meat sometimes too), but I think it’s a serious problem how horrified people will act about the sight of a dead pig or the idea of killing a pig, when they see no problem with eating pork. I’ve even heard someone imply she was morally superior to people who didn’t get upset by the sight of dead pigs--again, she was someone who ate dead pigs. This has implications far beyond eating meat or not eating meat and it can easily be seen in how people have different opinions about the deaths of people they can relate to--children, white people, non-disabled people, Americans--and people who seem too far away to be upset about.

It’s probably natural to be more upset about the death of a child, or someone you had a lot in common with, or the type of person you idealize. I’d probably have more of an emotional reaction to the murder of someone who lived in my city and had the same interests as me and had a disability. The thing is though that this reaction is meaningless. I shouldn’t let it dictate my opinion, because I should care equally about the murder of someone across the world who had nothing in common with me, or if I don’t, I should act like I do.

If I care more about my reaction to something that doesn’t directly affect me than I care about the reactions of people who are affected, or the facts of what happened, or how to keep it from happening again, then it’s like my idea of how to be a good person is based only in having feelings about things--not listening to and respecting people, not paying attention and researching what’s going on, not working to make things better.

This may surprise you but I think people are pretty bad already. But a great way to make yourself worse is to believe that you’re good because you did something completely useless that took no effort.

Privilege and the TPGA Dialogues

This is kind of a draft for a comment I want to write somewhere, but might end up not posting if I can't get it out right.

Basically, I see a lot of people talking about the TPGA dialogues as a situation when parents and self-advocates were both focused on the issues that personally affected them and didn't want to listen to the other side or didn't want to compromise.

As a person with a disability, I'd just like to say: I love parents. They're totally sweet. I read some parent blogs that I really like and that are helpful to me in thinking about anti-ableism more broadly (since most of the disabled people I meet on the Internet have certain abilities by definition). But this doesn't have much to do with the reasons a lot of Autistic people on the TPGA threads were saying things that made parents feel "uncomfortable" and "silenced."

I think it comes down to the fact that a lot of the Autistic people who were in the conversation are involved in the kind of Internet social justice atmosphere where the concept of privilege is very central. The article I linked to probably isn't the best explanation of privilege, but it is hard to find one article or blog post that explains it really well. But basically privilege refers to the benefits that someone has when they don't belong to an oppressed group. For example I have white privilege and class privilege (and a lot of other kinds of privilege).

A really important aspect of privilege is that a lot of people who have it may not realize that they have it or how much and this can lead to a tendency to center their own experience because they don't realize how much their experience is already centered. That tendency can take the form of feeling like something is being taken away from them when in fact a situation is being made more equal. (I'm not trying to attack anyone by saying this, I just want to explain the concept.)

Where I went to college, there was a fairly big community of students who either were trans or cared a lot about being supportive of people who were trans. In almost every student group and even occasionally in classes, it had become the norm to ask people to state their preferred pronoun when introducing themselves. This can make things easier for someone who is often perceived as a different gender from what they actually are, since they can address potential misunderstandings before they happen.

Sometimes you would hear people who were not trans, who were very nice people, saying things like, "I hate going around the room and saying pronouns. Like, 'I'm sorry I'm not special!'" Because they had never had to tell people what their gender was, they found it a silly thing to do at best, and at worst, they actually felt that they looked boring and "not special" when they asked for the pronoun that would probably already have been used for them. Even though their boring and "not special" answer was being given by most of the people in the room.

I've also seen a lot of non-trans people feel like they are being insulted when they are called the word "cis," which is just a synonym for non-trans. The word NT, while not one I especially like, doesn't need to be branded a slur by people without disabilities, but I have definitely seen them have that reaction. In both examples, people from the dominant group seem offended by the idea of being called any word at all, instead of just being the group that is nameless because everyone is assumed to belong to it.

I think you might be getting to see why this seems like too long and involved a comment to post on the blog of someone I don't know! But to return to the TPGA dialogues, it is believed in the social justice community (by social justice I mean a certain way of looking at the world) that the appropriate way to talk about oppression is for the people who don't have privilege to be the authority because they experience the oppression firsthand. This doesn't mean that people who are privileged shouldn't get to talk at all, but that if a lot of oppressed people are saying a particular thing about oppression, the privileged people should accept it is true, even if it means apologizing for something they did wrong.

Also, to reiterate, since privileged people often feel attacked just because a situation is being made more equal, someone who thinks about social justice this way is probably not going to feel guilty and back off just because a privileged person says, "I feel like I'm being silenced and people from my group aren't allowed to talk." In fact, the reaction is more likely to be, "What you feel isn't the point."

If a parent thinks that the problem with TPGA dialogues has to do with, for example, everyone only caring about how anti-ableism could personally help them, then I don't think they understand what happened. It isn't possible to understand a lot of the things said by people with disabilities if you don't, either academically or just personally, understand the concept of privilege.

this is a collection of tumblr posts so it may get longer

Maybe you know what's going on. If you don't that's okay. I don't want to use the person's name and maybe that's dumb but it just seems like such an archetypal situation that I don't see the point of causing drama. He seems unreachable. If you know who this is you already know. It's a non-disabled parent vs. disabled people internet drama thing. It is taking a lot out of me and I'm not even directly involved.

Zero

[I deleted this post immediately after making it]

has ted ever considered treating other people with 1% compassion? just do it! it'll be great!

One

also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.

it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:

“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”

okay dude, so let’s look at this.

basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.

but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)

anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!

but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”

IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!

Two

[obviously, this was also a direct comment on one of his posts]

Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)

So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.

The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.

I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.

(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)

Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.

Three

“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter


HEAD MEET DESK
FOREVER

but….but….HE IS HAVING IT!!! so therefore he ALSO sucks

and you’re talking about it on twitter so you suck too!

everyone sucks! we all have luxurious not-really-disabled lives!

[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]

Four

you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)

I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.

so ted was like…okay. That makes sense. I was jealous too.

yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”

now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.

it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.

but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.

different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?

now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.

imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?

not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?

this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.

his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”

what if we were all really disabled?

what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?

I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.

Five

from my favorite story:

Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."

"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.

Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."