Monthly Archives: June 2008

apology/retraction re: autism speaks t-shirt scandal thing

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A few entries back I talked about Autism Speaks trying to censor someone’s t-shirt. Turns out that there was some kind of complicated mixup, and the problem was actually Zazzle overinterpreting a complaint about a different shirt or something. I’ll also add a link at the beginning of my other post, to this post. At any rate, consider this a retraction and apology.

Additionally, if anyone wonders why I didn’t immediately do something when this was figured out — I still don’t know entirely what was figured out. I just know something was. I have been away from home for a week, only now have access to a fully functional computer again, do not yet have a fully-functioning brain, and have not even looked at (much less read) my email since I left home a week ago. I stumbled across a retraction by someone else minutes ago and have immediately written this post.

But, for anyone who actually can make good sense of everything they read right now, here is Zach’s post about the whole thing. At any rate, I’m sorry to Autism Speaks for assuming you were doing this sort of thing again, and to anyone else who might’ve gotten that idea from what I wrote. And I’m very glad Zazzle has been willing to finally clear up whatever really happened — which seemed to be an employee somehow misinterpreting something by Autism Speaks and thinking it was about Zach’s shirt when it wasn’t.

Please post corrections in comments if I got anything wrong about this. I’m going on three hours of sleep after a week of conference, which is not good for my comprehension and judgment abilities. Also, if you have posted anywhere about this as a result of what I or someone else wrote, please post your own retractions and apologies wherever you did that, so that other people don’t think this really happened when it didn’t. Just because you don’t like a person or organization doesn’t mean it’s okay to let misinformation stand when you know it’s false, so please spread the word.

Something ate my blogroll.

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Quite awhile ago. I haven’t figured out how to put it back yet. May figure out soon, may take awhile. If when I put it back, I forget anything that was there just before it vanished, let me know.

A practical tip for packing for trips.

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And no, the odd… it’s not alliteration, but some kind of interesting word pattern, in the title of this post wasn’t obvious to me until I typed it. :-)

I had to finish packing for Autreat today, with the help of someone else.

(This is also why I might not be able to get all the comments through moderation for awhile, so don’t panic if your comment doesn’t get through.)

After dealing with a few minor catastrophes (including a power outage during a thunderstorm, and discovering that someone tried to recharge non-rechargeable batteries in my charger, and the batteries leaked all over everything) we got down to trying to pack.

It’s really hard for me to pack, but I stuck it out for a few hours before I had to go and lie down.

Unfortunately, I wasn’t through telling the person I was with, which items I wanted in my messenger bag that I’d be carrying with me rather than sticking in the back of the car, and which items I just wanted packed the normal way.

My short-term memory can be utter crap sometimes. So by the time I got situated in bed, I’d forgotten most of the items and elements of them were jumbled up in my head. Everything was taking place in the other room and the other person, who was pretty strained herself, would’ve at that point probably found it impossible to either write a list of the items, carry them all into my room, or run back and forth talking to me about them.

Then I remembered I have a digital camera.

So I set it to maximum resolution, and handed it to her.

I basically said “Here, please go and take a photograph of the mess. Then bring it back, go on packing, and I’ll work out which things to put where and call you once I’ve made a list.”

She did that.

I got the photo, zoomed in, it reminded me of the locations of the items I wanted to put in my bag, and I made a list on that basis.

Both of us were very happy with this solution to the problem, it made things way less complicated than trying to either bring the stuff to me or bring me to the stuff at that point in time.

And I thought that technique might be useful to anyone who ever ends up in that situation themselves. Plus I want to remember it later myself. So I’m posting it.

How to communicate with people who insist that everyone communicates in multi-layered and manipulative ways?

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(Please note that this is mostly a discussion of things that have happened offline recently. If you read this, you’re not likely to know anyone involved.)

I’m not sure what to do in situations where the purpose of someone talking to me is not to communicate, but to do something else.

I’m not talking about the relatively common phenomenon where someone with trouble understanding language might not use language for the standard way or the standard reasons. Autistic people often have that problem, I’ve had that problem, it’s different from what I’m about to discuss.

I’m talking about people who seem to have no trouble understanding words, but who introduce far too many levels of meaning and manipulation into what should be the process of communication.

I’m also not talking only about non-autistic people, nor universally about non-autistic people. I figured I had to add this because frequently when autistic people talk about something they don’t like in someone else’s communication, it becomes an “autistic vs. NT” thing whether they say it explicitly or someone else reads it in. This isn’t. I’ve seen autistic people do similar things, and the vast majority of non-autistic people don’t think like this.

I’m also not talking about people who do this only very occasionally when under a lot of stress, nor am I talking about situations in which it’s perfectly legitimate to assume that a lot of indirect communication is going on.

I’m talking about people where it’s their habitual communication style to… well, one person I know offline described the communication of someone else offline as having several “layers”, similar to the following (they described it a little differently, I’m adjusting it to a different person I’ve met recently):

  • The literal meaning of what it is that they are saying.
  • The implication of what it is that they are saying.
  • What their actual thinking is (often different than either of those).
  • What they want other people to read into what they are saying.
  • What actions they want other people to go through after hearing what they are saying.
  • What hierarchical status they want to maintain for themselves and the person they are speaking to.

And then, the person assumes that no matter who they are talking to, all of these different layers to communication exist for that person as well. They can’t seem to understand that most of the world doesn’t operate on this extreme a level of manipulation or hidden meanings. Yes, there are unspoken assumptions behind all communication just because of the nature of language, and the impossibility of speaking in Entish (I always thought Entish must be endlessly recursive). But most people don’t constantly try to deliberately twist the purpose of communication into a pretzel to get people to do what they want.

It’s difficult for me to come up with exact examples of conversations that have worked that way. I can remember many such conversations, but what I can’t seem to do is make up conversations based on them. The reason I can’t, is that I am horrible at reading those hidden layers of manipulation into innocent statements. So it’s difficult for me to come up with a plausible reading of those things.

That’s one of the reasons those conversations are so frustrating to me — I cannot anticipate what someone like this will think of my statements, nor can I adjust my statements to convey the right hidden meanings. I know someone else who doesn’t like conversations like this either, but she can at least match the other person’s passive-aggressive tone, and people like this often leave her alone — at least to her face — because she out-argues them in their own language.

It’s also difficult when it’s really necessary to talk to someone like this, or to ask them questions. For instance, if someone like this is doing it on the job, there’s often no way to get around having to interact with them.

There is no possible way to make a straightforward statement around someone like this. They will read into it several layers of implied meaning, most of them manipulative, many having to do with where you position yourself on a social hierarchy, and many of them to do with your wanting something out of them.

One conversation I had with someone who wasn’t always this way but was this way more often than was comfortable, went like this. I’ll call them Barbara (the person with the sometimes-unpleasant communication style) and Cindy (a mutual friend of ours). Beware: drama ahead.

Barbara was talking about how Cindy was a kind and generous person, and had helped her in a number of ways.

I completely agreed with Barbara, and said she’d helped me out a lot too. As far as I was concerned, there was nothing unusual about this statement. It complimented a mutual friend, it said what a generous person she was, and it agreed totally with Barbara. I couldn’t conceivably see any hidden meanings in it, and so I was stunned by what Barbara did in response.

She became visibly irritated. She acted as if what I had said was somehow related to how I thought Barbara must think of me. And she grudgingly told me that of course she liked me a lot too, not just Cindy. I can’t remember her exact wording, but she really seriously believed that my statement in that regard had somehow mysteriously been a commentary on me thinking that Barbara did not like me very much.

And in reality, Barbara didn’t like me very much. But I had no reason to comment on this at that or any other time — I rarely talked to Barbara at all, and didn’t mind that she didn’t like me, especially because she was the sort of person that made me automatically wary anyway. But she would never admit it to me — she would only tell friends of mine that she didn’t like me, in fact that at times she hated me.

So somehow, when we were talking about both of us liking a mutual friend, she interpreted my statements that were clearly and directly about our friend, and entirely complimentary, as having a hidden meaning about whether she herself liked me.

If I thought really hard, I could come up with at least a tenuous chain of circumstances connecting all this. Because Barbara had actually attempted to manipulate things to separate Cindy from me. It hadn’t worked, and had backfired into losing some amount of trust from both of us. So I guess in some really roundabout manner a person could read into my liking Cindy, that I somehow knew Barbara didn’t like me and wanted her approval of me. But I only figured that part out today, years after all these events had come and gone. Because that wasn’t even a part of my motivation, wasn’t even in my mind.

I suppose that’s a simple example because the conversation involved was very short, and did not get into the layers of complexity that conversations with people like this can reach if the conversations are drawn out over a long time. They also become more complex from my end because over time things can shift around, so that one moment I am picking up the tone and dropping the words, and another I am picking up the words and dropping the tone, and that all makes keeping up with even the literal content of conversations like that challenging.

More recently I had one of those conversations, offline, with someone. I was communicating solely in order to give and receive information to make sure something was going to happen that was supposed to happen. I had non-autistic witnesses who said that I was in no way what would ordinarily be construed as rude or hostile.

However, this person read deliberate hostility into my every comment and proceeded to engage in an impressive flurry of passive-aggressive nastiness. She managed to convey that there was no reason that I needed the information and no reason to even speak to someone who communicates as slowly as I do (I was having someone read my computer screen to her), to interrupt me frequently when she knew I was typing responses to her, to assert her dominance and superiority on a regular basis, and to treat me like a waste of time and space. She also told me at one point that a conversation I was trying to clarify (that I’d had with someone else) had happened right in front of her, so she knew everything there was to know about that conversation (even though if she did she’d have to have been listening in on my end) and had no need to discuss its content. And even attempting to discuss its content was an act of hostility as far as she was concerned. She also engaged in a whole lot of non sequiturs — saying things about other people that had nothing at all to do with the situation at hand, but that she was trying to use to manipulate us into dropping the conversation altogether.

The person who was there reading the computer screen was stunned and appalled at her way of communicating. But it turns out she’s like that to most people, at least most people she sees as beneath her most of the time.

It’s impossible to have an exchange of literal information with someone like this. I can say “I really mean exactly what I say, I’m not implying anything else, I’m just trying to exchange facts with each other so we’re clear on what to do about something, this is a purely practical conversation and I don’t mean anything good or bad about anyone in the course of it.” And I can say that more concisely, or more elaborately. But when I say it, people like this will even read into those statements something that wasn’t there, and will continue to refuse to just talk about the information.

Another amazing thing about conversations with people who do this, is that once they have decided that I have hidden and sinister meanings behind my words, then there is nothing I can say that won’t be put through that filter. If I pay someone like this a compliment, they seem not to even notice: They even assume there’s an insult hidden behind the compliment! If I agree with the person, then there must be an insult hidden within the agreement! It becomes absolutely impossible to convince someone I’m not insulting them right and left, because the insults are there to them whether they see it or not.

And I’ve noticed that when that particular pattern of “there must be a hidden layer of meaning to everything I say, and usually a bad one” occurs in someone who isn’t just wary because of prior bad social experiences… it’s usually someone who manipulates people all the time. It’s usually someone who’s incredibly passive-aggressive, and who mostly communicates in ways tailored to manipulating other people rather than to simply exchange information or reinforce social bonding. Sometimes it’s manipulating people into actions, other times it’s simply attempting to manipulate everyone they know into liking them. But it’s always that sort of communication on way too many layers and expecting everyone else to do the same.

I don’t communicate on that many layers, at least not layers of that kind. I haven’t the foggiest idea how to communicate with people who do. Whether they’re autistic or not, their communication style is impossible for me to predict or decipher, and I have absolutely no clue how to say things in ways that they’ll understand the meaning rather than making up five or six layers of complication into it. I can’t even figure out how to say things in ways where they’ll take the imaginary layers as positive rather than negative. It’s just a complete mystery to me.

If anyone else has clues on how to communicate with people like this, please let me know.

Free Speech 101

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Updated to add: PLEASE READ MY APOLOGY AND RETRACTION. Autism Speaks did not do this this time. Anything not pertaining to Zach’s t-shirt is still a concern, but the thing with Zach’s t-shirt is no longer a concern. Please read my retraction for more links on the topic.

Someone just asked me why it was that I could oppose the kind of censorship occurring in my last post, when I am involved with two different organizations (ANI and autistics.org) who both have rules about what can and cannot be posted in their forums, and will put people on moderation if they break those rules. And, presumably, because I have a blog in which I don’t allow certain kinds of comments to be posted either.

I will try to explain the difference as well as I can, in case anyone else is wondering the same thing.

Edited to add: But first, please read through the ad hominem fallacy, tu quoque. Even if I were really engaged in censorship, it would not make me inaccurate in pointing out someone else’s. But, I’m not.

Basically it works like this:

Censorship (or in some people’s view, the bad kind of censorship) is preventing someone from doing the equivalent of printing their own totally legal material on their own paper.

Whereas, what autistics.org and ANI have as policies, is the equivalent of saying that you can’t print certain views on paper that we happen to own. You can’t do the equivalent of coming in and using our printing presses to just print whatever agenda you feel like, there are boundaries there. That’s totally fine.

I could decide to create a mailing list that had a rule that anyone whose name started with F could not post there, ever, and that everyone else could only post every other Tuesday. I could then put people on moderation if they tried to break those rules, or even remove them from the list. That would not be censorship — people whose names started with F could go and post somewhere else, and same with people who wanted to post on days other than alternate Tuesdays. I would not be preventing them from doing that.

What would be censorship is if I started such a list, and then went around trying to keep other people from breaking my rules on their own lists that I didn’t even own.

I would have no problem if the Autism Speaks message board moderated or banned perfectly legal posts that disagreed with the mission of the organization. They have every right to do that. It’s their message board, not mine. I would have no problem if I were moderated or thrown off of a mailing list dedicated to chelation of autistic people, because I clearly disagree with that procedure. People are routinely thrown off such lists and that’s just fine.

They’re not doing that.

If people printed up a batch of t-shirts saying “autistics.org doesn’t speak for me,” I wouldn’t try to do anything, I wouldn’t even really care. I certainly wouldn’t sue them for copyright infringement for saying the word “autistics.org”.

If someone tried to disseminate the idea that autistics.org was run by a bunch of child molesters, that would be defamatory, and that would not be okay. Defamation is not protected free speech.

If someone tried to sell a book with the writings from autistics.org in it, without obtaining permission (and this has happened in at least one book that I came across completely by accident one day), that would be copyright infringement, and that would not be okay.

But a t-shirt saying “autistics.org doesn’t speak for me” or “Autism Speaks doesn’t speak for me” is well within protected free speech, at least in the United States, where both autistics.org and Autism Speaks are based.

Now, if someone tries to come to, say, ANI-L, with the express purpose of trying to talk everyone into believing that it’s horrible not to want a cure, then they will probably eventually get themselves banned.

If someone tries to come onto my blog and violate my comment policy (say, telling people here we’re not autistic enough to understand the needs of real autistic people), then their comments will be moderated, and if it happens consistently enough with them not providing much if any useful content beyond that, I might chuck their name into my spam filter and forget about them. (I so far have not had to do this very often, most people are more respectful than that.)

But people are totally able to go off and make their own mailing lists or blogs with the totally opposite set of rules. Free speech means that you can go make a mailing list or blog dedicated entirely to wanting a cure, and throw off anyone who argues against it because it gets in the way of your goal of finding or funding a cure.

Free speech means that you can go off and form a mailing list entirely full of people that you believe are “autistic enough” to comment about autism, and moderate comments from anyone you don’t think is autistic enough.

Free speech doesn’t mean that you have every right to, no matter what your viewpoint is and what organization it is, come onto someone else’s forum, or use someone else’s printing press, to disseminate your own viewpoint.

So there’s no actual contradiction here: Autism Speaks is attempting to interfere with other people’s totally legal and protected free speech. They are not just restricting what can be said on their own forum (which is their right, whether they choose to do so or not), they are attempting to restrict totally legal (non-copyright-infringing, non-defamatory) content that people print on their own t-shirts and websites, just because it expresses dislike of their organization.

And that’s all the difference in the world.

Autism Speaks is at it again towards self-advocates.

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Updated to add: PLEASE READ MY APOLOGY AND RETRACTION. Autism Speaks did not do this this time. Anything not pertaining to Zach’s t-shirt is still a concern, but the thing with Zach’s t-shirt is no longer a concern. Please read my retraction for more links on the topic.

Probably everyone remembers what happened to that teenage autistic girl who made a parody site of Autism Speaks called “NT Speaks”. It’s preserved here, on aspiesforfreedom.

This also prompted Larry Arnold to secure the domain autismspeaks.eu, where he comments:

This domain is owned by Laurence Arnold FRSA. who asserts the principle that here in Europe, Autistics speak and when we do, we should be listened to.

He explains his decision here, and notes that he won’t use the site for NT-bashing, just for autistic self-advocacy.

Well now, Zach from AspieWeb has made t-shirts on Zazzle that contain no logos or any other copyrighted material from Autism Speaks. They read:

‘Autism Speaks’
can go away
I have autism
I can speak for myself

Zazzle sent him a notice saying they violated a copyright and were taken down for that reason. Of course they didn’t violate one, but a lot of us were wondering if Zazzle had just autosearched for what they thought were copyrighted stuff or something.

It turns out that’s not the case. Zach wrote to Zazzle to ask what was going on, and Zazzle’s Content Management Team wrote back to Zach saying, in part:

Unfortunately, we have been contacted by Autism Speaks Inc. and it was requested that these products be removed from Zazzle.com. At the risk of legal action taken against Zazzle and yourself as a contributor of these products, it was decided that it was in the best interest of both parties to have the products removed from the Zazzle Marketplace.

So it seems that Autism Speaks is forming a pattern here of trying to silence autistic people who disagree with their goals, methods, or other aspects of the organization. What on earth does that say about their level of respect towards autistic people?

I’d always thought that their famous “articles of understanding” with GRASP were merely to say that they’d “dialogued” (or some other pretentious buzzword that’s good for PR) with autistic people who disagreed with them, while they could either ignore or try to silence the rest of us.

Especially since they trotted out the old cliches and stereotypes of the disagreement ather than having anything as “productive” to say as they claimed to have.

For instance, their first “article of understanding” was a note by Ami Klin that autism is extremely variable. This apparently set the stage for the idea that the reason that there are so many different opinions on autism is that there are so many different kinds of autism, and that different kinds go with different opinions.

Nothing I have seen among autistic people’s opinions about autism has ever truly followed that pattern, but it remains one of the most common myths about the entire debate. It’s also a fairly offensive myth, in that. Because what it says, is that autistic people are not able to form our own opinions politically. It says that the only reason that we have different opinions is because our neurologies dictate it. Not because we have been, or not been, exposed to various information, leading us to make various choices about what we believe. It denies autistic people the agency that we truly have in deciding what our opinions are.

As Cal Montgomery said in Defining Autistic Lives, after a wonderful set of descriptions of the limitations of using functioning level labels to describe human beings:

I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.

Then, in Alison Tepper Singer’s contribution to the Articles of Understanding, she wrote things like the following, about her daughter:

It is hard to consider her “differently abled” because she is not “abled”.

I’m not too fond of the term “differently abled” either, but it’s pretty offensive to say someone is not “abled”.

She also says, after wondering out loud whether the spectrum is too wide by including Asperger’s at all, that Autism Speaks focuses on the “low functioning” end of the autistic spectrum. If this is so, then they shouldn’t be using the number “1 in 150” or “1 in 166” in all their advertising. These numbers explicitly include people labeled with Asperger’s and other people labeled high-functioning. You can’t use a set of people to get money for your cause and then claim that they aren’t the ones you’re talking about.

She also says that parents of “high-functioning” children just naturally don’t want to be associated with autism because of the stigma, and therefore aren’t involved in her organization. That’s just not true. A lot of parents active in parent groups have children who would be considered “high-functioning” by most definitions. I know some who’ve tried to contact Autism Speaks only to be brushed off and ignored. I know parents of kids considered low-functioning who’ve tried to contact Autism Speaks only to be brushed off and ignored.

She also says that attracting parents who have “low functioning” children is why they have so many parents who are in search of a cure. That’s not true at all. I know parents of non-speaking children who have tried to contact Autism Speaks over and over again and gotten nowhere, not because their children were too “high functioning,” but because they disagreed with the idea of curing autism. The idea that people with “low functioning” children all want a cure is as nonsensical as saying all autistic people labeled “low functioning” want a cure.

And the rest of what she writes is full of statements that are completely mischaracterize people who don’t want to cure their own autism or their children’s autism, and suggests again that, despite using the “1 in 150″/”1 in 166” numbers for fundraising, most of those “1 in 150″/”1 in 166” don’t actually count for anything in their organization. The letter is not an article that shows any understanding of anything except how to deftly manipulate people’s stereotypes so they will have a nice neat little category for anyone who happens to disagree with Autism Speaks.

Meanwhile, when autistic people actually speak out against their organization, they don’t listen, they don’t understand, they just try to silence us. Autism “speaks”? Yeah right. More like the same old same old catch-22 — “If you can’t speak, we speak for you, if you can speak, we’ll try to silence you — but we’ll use you in our fundraising statistics nonetheless.”

How (not) to ask me questions.

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This post is in the spirit of Eyeballs eyeballs eyeballs. Picture the person in strong/bold letters as talking very rapidly and very loudly with only the shortest pauses in between.

DUUYUUWAHNNIKAEH’? . Let’s see… “cat”, “do you,” what is she… how do I connect these to meanings… YORSAENWIHCHDUUYUUWAHNNIKAEH’ (head goes blank again, blank look must be on face) KAEH’ KAEH’ (WAVE OBJECT IN FACE AND START SLASHING HAND ACROSS IT) (okay what was she saying again, something about cats, why cats?) DUUYUUWAHNNIKAEH SUHMPEEPUHLLAYIK DHAIRSAENWIHCHKAE’ DIHNDHUHMIDUHL
“do you want”… “some people like”… argh why won’t she give me a minute to think? SUHMPEEPULLAYIK
DHAIRSAENWIHCHIHSKAEH’
why does she drive out any words and meanings I’m figuring out by piling more words into this? (IMPATIENTLY WAVE OBJECT IN FACE AND SLASH HAND ACROSS IT) KAEH’KAEH’LAYIKDHIHS …argh. Just say yes and she’ll stop.

Translation:

She’s holding a sandwich on a plate. She says, “Do you want it cut?” I sit there looking confused, finally having figured out that these are words and that one of them sounds like “cat”. Within half a beat of me figuring that out she says, “Your sandwich, do you want it cut?” This drives all the interpretation out of my brain and I have to start over. While she’s saying it I’m just barely getting meaning out of the first sentence. And as I slowly progress in understanding them, she keeps interrupting it. “Cut! Cut!” She mimes cutting through a sand with her hands. “Do you want it cut? Some people like their sandwiches cut in the middle.” I’m still trying to figure out what’s going on, having so far only managed to retain the idea that I’m being asked a question. She mimes cutting again. “Cut. Cut. Like this.” Etc. I figure out she’s asking something, that it’s in a yes/no question pattern, and that if I say yes she’ll probably stop throwing words in my face.

The problem is that a question has urgency about it. It has “you have to answer this” somewhere in it. It turns on this whole program in my head devoted to giving random answers to questions to get them to stop. And then a lot of people will barely wait a single moment after asking a question, to go on and ask more of them. They don’t realize that as they’re doing this they’re just throwing on more and more language to process. And that each time they ask a question, the message I get in my head is “Urgent, urgent, needs response, now need to figure out how to respond,” and I have to then backtrack and figure out what the question is if I don’t want to just give a random answer (I have a bunch of templates stored in my head for question types that have easy enough answers to randomly pull out to get people to stop asking them). And then halfway through my figuring it out it gets interrupted by another message of “Urgent! Urgent! Answer them!”

So the end result is a huge pile of urgency in my head and no comprehension until the person has finally shut up and gone away.

And text is only slightly better than this. If you expect me to rapidly process a question, you’re expecting that it’s a really good day for language processing. If you keep asking them over and over, you’ll just add to the stuff to process, not make it easier to answer. And there are a lot of people whose style of question-asking seems to be along the lines of stacking questions on top of each other. Sometimes it’s assorted variants on the same question. Sometimes it’s slightly or even majorly different questions asked two at a time and leaving me wondering which one to answer — “Do you want to do something do you want to go to the park?” is one of my least favorite question styles. It’s like a run-on question.

I noticed some time a year or two ago, that I do a lot of my communication with staff people without relying on the language content, and that one of the problems with new people is the amount of language I have to produce and understand in orienting them to the job. Someone who’s been here awhile will hand me something, and say what to do with it, and I won’t even hear them saying what to do, I just know from routine that it’s always what I do with it and the words don’t matter. Even if the words are something I have to answer, I find myself often able to give yes/no answers without having a clue what the person is saying. I noticed that a huge amount of the time people are working for me, they have no idea that I am not hearing the majority of the words they’re saying. I just know all the motions to go through and all the responses to give and I do it largely based on where they are positioned, where I am positioned, how each of us is moving, and what objects are being handed around.

And when people — strangers or just people unfamiliar with me — do notice that I’m not noticing what they’re saying, they seem to have a tendency to say something in a snippy tone along the lines of “Do you have a hearing problem or something?”

Note that I can often figure out what people are saying, sometimes even quite quickly. But it takes a certain level of effort, focus, concentration, energy, and ability to do that on that particular day. It helps if the topic is very familiar. And none of it ever feels natural or easy.

The problem is that explaining my incomprehension to others is so familiar that I can do that, and most of the responses, by rote, leaving them with the impression that their questions and responses are somehow all being understood when they’re really not.

I also do understand a whole lot of things with a delay. I now understand the entire conversation this person had with me half an hour ago. And there are still vivid memories as far back as 25 years ago that I am still trying to figure out the words to. I go over and over the sounds in my head and try to put them together into something meaningful. Often one day I’ll just spontaneously realize what someone said to me when I was 3 years old.

There are also times when there’s no comprehension possible, including no awareness that the words are even something that ought to concern me any more than white noise would. All of these different things are largely the same as the auditory version of the way I explained reading to be in my post titled Safety Hazards.

But at any rate — the best thing to do with a question is make sure I’m paying attention (and this doesn’t have to mean “looking at you”, it means focused on understanding what you’re saying), then ask one question (not a double-decker question either) and wait for an answer. You might get a quick one or a slow one, but the more you throw words on top of words, and the more pressure you put on, the more you slow me down. And the more likely you make it that I’ll give an inaccurate scripted answer if I answer at all — which isn’t fair to either of us, so I try hard to suppress that. If the interaction is over something where you can hand me an object that’s capable of prompting me in the right direction, all the better.

R.I.P. Harriet McBryde Johnson

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I only knew her from her writing, but I cried when I heard.

And I’m still having trouble believing she’s dead. She was so fundamentally there, and now she’s not there. I’ve edited this to include a lot of the links that were missing last night, plus a quote.

Unspeakable Conversations is her most famous article.

The Disability Gulag is another.

Not Dead At All is another.

She wrote a book called Too Late to Die Young: Nearly True Tales from a Life. One excerpt is here.

She wrote another book, this one fictional, called Accidents of Nature.

She did a talk at the Holocaust Memorial Museum called Medical Ethics: Legitimizing the Unthinkable, and she answered questions like What is a disability? and Can we talk about cure?, Why as a kid did we protest telethons, and So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine.

New Mobility named her Person of the Year in 2004.

I’ll end this with a quote by her from Too Late to Die Young. I wish all autistic people who think that they’re non-disabled just because they find pleasure in being autistic, would read it and rethink what they think they know about the experience of disability. I think it exemplifies the core of what she was trying to do, what a lot of us are trying to do. And in the end it speaks for itself:

My path is constrained but endlessly varied. I watch the sun move up in the morning sky and in and out of clouds, take in the changing light that constantly reinvents the cities classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of sea and flowering trees and restaurant grease. Some of the best mornings are the mornings when nothing happens, when there is no story but the continuing relationship of this old city with the ocean that roars just out of sight and with the living jungle that tentatively tolerates our existence here.

How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that might seem a bit odd.

Let me give some examples.

John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.

A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.

Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore. As he lives with one marvelous view, he says life doesn’t go away; where would it go? he says life has never been richer or more juicy.

In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.

After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.

My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.

At a summer camp, a mentally retarded boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her explanations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body — imperfect, impermanent, falling apart — is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.

Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may at one time have done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.

The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.