Category Archives: Uncategorized

On adjustment, dogs, and not “smiling through the pain”.

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I’ve recently seen a lot of people comment on disabled people’s opinions, in the context of “adjusting” to whatever condition we’re said to have.

Basically, if a disabled person is fine with being disabled, then it’s clearly some kind of defense against having to “hope” for a cure. The idea of just being okay with the way your body functions (at least to the extent most people are) seems to be unthinkable to some people. And the idea that disabled people’s opinions come from deep emotional conflicts over the fact that our bodies work the way they do… just no.

I used to talk online with someone who had cerebral palsy. She said that every time she had a negative emotion, it was considered to be “not adjusting to her disability”. Even though she was born that way. She didn’t need to adjust, she’d always had a body that operated the way hers does.

The fact is that a lot of disabled people either actively don’t want to have bodies that function in typical ways (at least not in all respects), or else basically don’t want to be bothered.

About not wanting to be bothered:

Lots of children dream of becoming sports stars. This may lead to them getting into that sport on a child’s level, but very few take it to the point of making it their life’s goal. Often, they do not have the kind of body, or reaction time, or cognition, suited for whatever that sport is. And generally they find other things to do with their lives, enough other things that not being a baseball star doesn’t ruin their lives, and most of the time they don’t even think “Gee, I’m not built to be a baseball star.” It’s just not part of how they work, and so it’s not even an idea that crosses their mind often.

Not everyone is built to be a sports star. Most people don’t lament not being one, or they might do so a little but not a huge amount. This is because it’s considered normal not to have a body optimized for that particular thing.

The same is true for disabled people. We don’t have standard bodies (I’m including brain in body for simplicity of language here, and also because it is a body part), any more than most people have standard sports-star bodies. Most of us don’t lament that fact. Those that do (especially those who suddenly became disabled), generally get over it.

Or as one person said, whose name I wish I remembered so I could cite wherever she wrote this, “I don’t wake up in the morning and think ‘Yep, still disabled.'” (That’s either a quote or a close paraphrase, I’m not sure.)

Most people see disability as this huge, life-altering, scary, tragic, horrible, unremittingly unpleasant, thing. And so they imagine that’s how most disabled people see it.

Some of us do. But most of us — even many people with shortened lifespans — see it as an inconvenience at worst. We may or may not do things to make our bodies function in more typical manners, but most of us do not spend all our time engaging in pointless exercises in self-pity. The fact that some people expect that we do (and that all our other thoughts on disability are just a defense against feeling sorry for ourselves) says more about the people who say that (and their conception about what it’s like) than it does about us.

Dave Hingsburger once compared me to a three-legged dog. I had clearly found ways of doing what I needed to do, with the body I’ve got, rather than emulating someone with a more typical body. I was also not particularly wallowing in a huge sea of negative emotions for having the body I’ve got (why would I?). He’d seen a three-legged dog that was the same way.

In fact, three-legged dogs and cats generally do just find ways of doing what they’ve got to do with the bodies they’ve got. Not because they’re “too simple” to know better or something, nor because they’re any stronger or braver than humans are, they just for whatever reason don’t tend to automatically go in the direction of “Woe is me, I am disabled.” They seem to just figure out what needs to be changed and change it (if they weren’t born that way, in which case they just figure out what to do the same way anyone does).

I think that human beings could take a lesson from dogs and cats this way. Not like “Wow it’s so inspirational that that cat still walks around even though she’s got to use a cat-wheelchair for her back legs.” (What do they expect her to do?) Not like, “Wow that dog really overcame his disability, and we should do the same!” More like, why throw all these pointless and meddlesome ideas on top of an experience that’s close to universal when taken across an entire lifespan?

It seems though that many people view disability as necessarily something that you have to be in a constant adversarial role with. In which case you have to “adjust” to it or something. But… really, views about disability are not all tied back to some imaginary experience people would think we are having as disabled people. People seem to think they have to make a relatively simple thing more complicated than it is, adding all kinds of layers of emotion and misconceived thoughts to it.

So, no. My views about my body, such as they are, are not all “adjustments” to having it, any more than most people’s feelings about their bodies are “adjustments” to having their bodies. But it seems like in some circles you have to have a more-or-less standard body in order to be allowed the privilege of not having their thoughts and feelings (especially positive ones) about their body be considered an “adjustment” to the awful state of affairs that their bodies are presumed to be. Or as the book Pride Against Prejudice by Jenny Morris said, just because we are happy does not mean we’re “just smiling through the pain” or “just putting a good face on it”.

DIY Communication Devices

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Disclaimer: This is about a communication device that Anne helped me set up as a backup communication device (all my other backups — mostly bought used, some bought broken to replace parts in dead ones — have by now long since died or otherwise become unusable by me). Make one of these things at your own risk. Before you buy it, look into it more, understanding that so far neither Anne nor I have figured out how to get full functionality out of the software, and that it involves various vaguely techie stuff like looking for DLL files to download and stick in the right directories and stuff, or the thing simply will not work at all. And this device may be totally unusable to some people for a number of reasons that have to do with the size and shape of the machine, input accepted, etc. It’s not a replacement for a primary communication device either, but an excellent backup for some people, and for other it might be what they’d have to settle for until and unless they got something better.

Anyway, none of my backups work well enough for me to use at the moment (most don’t work at all), and even my main communication device is well-nigh impossible to use with the telephone in my house because of pesky things like logistics, priorities, and the laws of physics.

But I thought this sort of thing would be useful for anyone who has speech difficulties, whether it’s a physical thing, a cognitive thing, an emotional thing, or whatever. Anne said she’s thinking of publishing a guide on putting one of these things together, and that sounds like a good idea to me.

The best part about this is that all the parts can be found used and/or refurbished. This is a good thing because a huge number of disabled people are one or more of the following:

  • Under, at, or near the poverty line (unable to afford new equipment, might be able to afford old equipment)
  • Unemployed or underemployed
  • Uninsured or underinsured
  • Severely doctor-phobic (either because of the same condition that causes the speech problem, or because many disabled people have been so badly abused by parts of the medical profession that we end up fearing the whole thing)
  • Unable to speak (or speak clearly) for reasons that insurance wouldn’t cover, that medical professionals want them to ‘just get over’, or that would mean discriminatory treatment if people found out the reasons. (For instance, someone so anxious they can’t talk to supermarket clerks might find a medical professional unwilling to get them a device, even if the supermarket problem logistically needs to be solved before the anxiety problem can be solved; alternately they might encounter potentially life-threatening medical discrimination if their doctor found out they had a problem most people consider psychiatric.)
  • Intermittently unable to speak, which sometimes means insurance won’t cover it (although insurance funded my first device while I still had intermittent speech that was superficially good the moments I had it)
  • Under insurance plans that only let them have one device for a huge variety of situations, including situations where you really need a small and lightweight device (when your normal one might be big and heavy for good reason)
  • Speech-related trouble that is so mild that insurance wouldn’t cover it, but that still impact the person’s life heavily enough they want an alternative.
  • Etc.

So basically, not everyone can get a device. This isn’t a perfect solution because it still costs money and not everyone has money. But something you can get for anything between $100-400 depending on where you get things and how lucky you get, is still better than getting a worse device for $2000 (yes, I have seen far worse for that amount of money).

The parts are:

  • An HP Jornada of the sort that have a keyboard. (Mine’s a 728, Anne’s is a 720.) Although technically this could also run on something that takes a stylus, as long as there’s an onscreen keyboard (in fact parts of it run better on standard PDAs than on this series of Jornadas). I’ve seen these things go for anywhere between $10 and $250, and obviously a lot depends on the condition and where you’re getting it, and also whether you need to buy a new battery for it or not.
  • An external speaker that will have louder sound than the PDA itself (because the PDA has very minimal sound in most situations you’d wnat to use one in), and high enough quality to carry the voice. Anne and I both independently came to the conclusion we’d get Altec Lansing orbits, but there are undoubtedly better things out there than this, especially for people with coordination problems or hand weakness given how it turns on and off. I’ve seen those go for anything from $5 to $100.
  • A voice from Cepstral ($20 each, I picked Callie, Anne picked Diane)
  • A couple of DLL files since Jornadas usually run Windows Handheld 2000 and the software is written for more standard Pocket PCs. It’s specific versions, Anne and I are testing a lot of them to see which ones are best. They don’t provide full functionality of the Cepstral software, but then again that might be a screen shape issue. Full functionality, however, is nice, but not necessarily needed.
  • Velcro (Anne’s method so far), duct tape (my method so far), or some other means of affixing the speaker to the back of the Jornada.

And here’s the result:

jrnd1

jrnd2

jrnd3

My hands are there for size comparison, though the angle can make that confusing. Be aware I have small hands.

I have not yet got a video for it, and don’t hold your breath waiting, I haven’t been good at making videos lately at all.

Anyway, the plus side so far (some of these would be drawbacks for other people):

The portability. Sometimes I don’t have the energy, time, and/or inclination to lug a Dynavox around.

The size. Which is the reason I can’t use the Dynavox on the phone at the moment with other logistics and priorities within my apartment. Practically the moment I got this thing together, I had to make a pretty high-priority phone call to one of those services that calls you back later. I hadn’t been able to take those calls by myself in ages. So I didn’t get it a moment too soon.

The battery life seems pretty long so far. I have heard it’s longer on a 720 than on a 728, presumably because the 728 has more memory (AFAIK the only difference between the two). I haven’t had time to test this.

Keyboard size. I have tendonitis and not having to move my hands as far is really helpful. (I can’t imagine ten-finger touch-typing on this with large hands, I’m not even sure whether people with average-sized hands can do it or not.)

The shallow and light keys. The combination of tendonitis and hypermobility makes me dislike any key that’s hard to press. These are very easy to press. (Which might be a pain for someone who wants a lot of tactile feedback when the buttons are pushed.)

The minus side so far:

Some of the menus cut off halfway down, Anne and I have not figured out a way around it. (If anyone is willing to help us find something that allows us to either scroll the desktop down past the bottom of the screen, or take an already-running program and wrap anything going off the bottom of the screen onto the top of the screen, let one of us know. If anyone’s able to program a better-suited either cheap or freeware frontend to the Cepstral voices with the same functoinality, also let us know. This, among other things, is preventing us from saving our voice configurations, we have to slow down the voices and (in my case) lower them a little, every single time.)

The external speaker is hard to turn on and off, due to having to grab it and twist in a very particular way. It seems like it could break easily too, and it’s gotten stuck in between on and off several times.

The DLLs were a pain to get, both of us had to do them from scratch. We might provide better information on that later.

I don’t know that this will be a problem for me or not yet, but I’m not sure how durable this thing is. I no longer fling communication devices at walls or bash them on my head, but I’m still given to forgetting I have a hand, and consequently dropping things as my hand reverts to neutral or fails to correct for some other movement.

I haven’t figured out a way to mount it to my wheelchair yet, let alone at the right height. I wonder whether cannibalizing a mount-plate would be feasible, or whether that’d introduce other problems (it’d have to be able to come on and off even the mountplate quickly, because it has a USB cradle it has to fit into for charging and communication with my computer). Don’t know yet.

I have not yet gotten Ubuntu linux to recognize the Jornada as even existing, let alone talking to it. Still working on it. Haven’t yet tried using wine, I just booted to windows altogether.

I have also not yet tried finding the equipment to plug one into the phone directly. You can buy a thing from Radio Shack for about $15ish IIRC, that is meant for recording telephone calls with and playing tapes back over the phone. You connect it to the phone, flip it into “play” instead of “record”, plug it into the headphone port of the device, and you have a real (if sometimes awkward and ungainly) means of using a device’s sound output directly into the telephone. Depending on the situation an amplifier might also be necessary in between the communication device and the previous doohickey I just explained (I don’t know the word for them).

Anyway, I’m very happy with it so far despite its shortcomings, and looking forward to being able to improve on it. I am sure many variations on the same theme can be made, some of them more cheaply than this, some more expensively. Cepstral is a great source of cheap voices. Joel has made JTalk software to be used with different voices, on a different platform. Neither his nor Anne’s projects are intended to replace a person’s primary mode of communication, there’s too much that could go wrong that way. But as a backup or supplement to another means of communication, they can be excellent, and I’m very happy with it.

I don’t know anything about economics, but I know this is bad.

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I know almost nothing about economics. I have to admit I don’t even know what a stock is, despite many explanations by many people. Some people have told me it just doesn’t fit with my kind of brain. Other people have told me I didn’t grow up with rich enough parents to be immersed in this kind of talk the way some other kids were (when we covered this in school, I was the only kid in my class whose dad didn’t invest — not that I retained a lot of learning from school anyway). Still other people have told me that the reason I can’t comprehend it is because it’s inherently self-contradictory on many levels and everyone sort of pretends it makes sense, and I’m not good at doing that, or something. Regardless, it’s just not a subject I have ever been good at, it might as well be gibberish as far as I’m concerned. (And I don’t even know stuff that I was immersed in, like credit, well enough to be confident in using them. This is the biggest reason why I have never had a credit card — I don’t dare mess with money in ways I don’t understand, and I understand it less than the average person does.)

Whatever is going on, and whatever my lack of understanding, I know that this can’t be good.

The New York Times seems to have several stories on the topic. That is one of them. It’s also the top story on Google News, with 2223 related articles the last I was able to search it, and every time I look there’s a different headline at the top.

I’m told that economists have been predicting this sort of thing for awhile, but everyone’s been distracted.

I’m also told that we have a chance of patching this up for a little while, but it’s only a patch-up, and things are likely to be really screwed up for awhile.

I hope that people are able to see that this sort of thing matters more than whether people agree on a lot of other things. Just like a lot of crises matter more than individual differences of opinion (the way the environment is going is another one that seems hopelessly mired in the worst kind of politics (the kind most people think of when they hear “politics”, not the kind of politics I usually try to involve myself with)). This is one of those things where people have to get past their own ego and look at the bigger picture no matter who they are. I’m just afraid that the most powerful people, won’t do that, they’ll be too busy point-scoring against each other to even notice what to do. I hope to be proved wrong.

Larry Arnold has repeatedly warned against choosing political candidates entirely on the basis of their stance on autism-related issues — things like climate change, for instance, are a heck of a lot more pressing. And as he frequently notes, in the autism and autistic communities people often lose sight of the fact that we are only one form (or at any rate, a small number of forms) of neurological variance, and neurological variance is only one set of the variances that comprise disability, and disabled people are only one part of the human race. It is true, that some of us (me included) are thinking of the larger picture while only able to write about pieces of it (because of a combination of our own limitations around language, and the limitations of language itself), and that many of us have a lot more thoughts on a lot of things than we can express at any one time. But it is also true that at some point that people who can address these things explicitly at any given point, need to do so.

I’m not saying conflict is bad. Conflict over the right things is absolutely essential. But before you jump into conflict-mode, make sure it’s over the right things. And whatever you do, don’t be like a bunch of North-Going Zaxes and South-Going Zaxes clinging to their mental widgets for dear life while things they could actually do something about are falling apart around them in the real world that those widgets are directing them away from (like a weaving a charmed web alway, and all that — does combining Dr. Seuss and Tennyson in the same breath mean I’m up too late?). There’s a time and a place — make sure it’s that time and that place.

And I hope that people will actually work together to solve these various more universal problems, rather than getting lost in the endless discussion of who is opposed to which thing that has nothing to do with this, or only tangentially is related. I have nothing to contribute in terms of knowledge of economics, and none of the powerful people will likely read this. But I am often capable of recognizing a situation where it’s important to put aside other differences while working on a problem. And this is certainly one of those situations. I don’t expect the people with the most power to be reading this or anything, but I hope that this will at least remind people who do read it to think twice when they recognize themselves losing focus on what is important. “People who do read it” includes me, and I’m writing this as much to remind myself as any other given person.

Conceptualizing Autism

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I know I haven’t posted in awhile, and this isn’t really much of a post, but I just wanted to direct you to:

Conceptualizing Autism

Which is at Existence is Wonderful, and manages to clearly put into words a lot of things I’ve noticed but never been able to say all at once. (Something that Anne is talented at in general.)

Just one quote out of many good ones here. She talks of three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior. Of the set of outward behavior normally used to recognize autistic people, she notes:

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

The best present I’ve ever received.

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Parents, take note: This is something you might consider doing for your children.

People in general, take note: If your parents are alive, and you’re able to ask them for things like this, it might be a good thing to ask for.

Today’s my birthday, and my parents sent me the best present I’ve ever gotten. (I’m saying this here in case, as is likely, I’m not able to on the telephone call because of my current setup.)

They sent two binders. One for each of them. Inside is the beginning of the story of each of their lives, as well as descriptions of where they lived and what it was like growing up, including how it differed from where and when I grew up, as well as historical events that happened at the time. They put in childhood photos, and also photos and maps of the places, people, and things they interacted with. They wrote them separately from each other, then showed each other when they were done. And they said they’d send more pages later for me to put into the binders.

Most people don’t know a lot about what their parents were like as children, and how it differed from their own lives. For me it’s a bit more extreme than usual, because my parents were older than usual when they had me. (People often thought, when I was growing up, that my father was my grandfather — he’s old enough to be, and he had a grey beard. They thought my brother was my father, too, since he’s fourteen years older than me and (like the rest of the family) a good deal taller.)

One of the first events my father describes is the bombing of Pearl Harbor, which occurred when he was a baby. My mom talks about how when she was a kid, her left-handedness was considered pathological, and considered not only related to which hand was dominant, but also to her habit of incessant question-asking and any other unusual traits she had. (She said when her father injured his right hand, she very seriously warned him that he would begin to ask questions about everything.)

I’m not going to go into public detail about everything they said unless they give permission, because I’m sure some of it is personal. But I have to say both of them had very interesting, and sometimes hilarious, lives. And it was interesting to see how they thought of things when they were three years old, too.

Anyway, I think this is one of the best things you can give your children when you’re a parent. It gives a sense of perspective that I never had because I never knew much about their childhoods. And I think everyone ought to be able to find out what it was like when their parents were kids. I’m looking forward to their later installments. (And I’d suggest to my parents, if you haven’t already, you might want to send these to my brothers too, they’d probably be interested as well.)

About this “can’t defend themselves” stuff.

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I’ve seen some other people, such as Dave Hingsburger, begin to get really irritated with responses to a certain situation. Basically a movie that says ‘retard’ a lot and stereotypes people with developmental disabilities. Many people have been responding saying that it’s awful because disabled people are defenseless, incapable of defending ourselves.

I commented in one spot about that, and nobody responded to me. But Dave Hingsburger commented on it, and lots of people responded to him. They said that they had very young children, and that no child can defend themselves, and therefore it’s okay.

But can’t anyone see that doing this on the (strongly implied) basis that we’re all children is the problem?

If a movie were putting out horrible stereotypes of women, enough that women felt the need to protest, and of course those who cared about women also felt that need, would anyone say, “Poor things, they can’t defend themselves”?

Well yes, some people might. It’d be recognized as a damaging and inaccurate stereotype though.

And I don’t think anyone would dream of saying, “But… but… I have a little girl. She’s only four months old. No four-month-olds can defend themselves against this stuff. So it makes total sense that people say women in general can’t defend themselves.”

It’s no different if you say it about babies or young children with developmental disabilities. This is stuff that affects us all — everyone it’s applied to. Most of us are adults. To defend a stereotype of us based on the fact that it’s true of children, is just one more added stereotype.

I hope this makes sense, I’m having trouble getting the words for it. But I am finding myself more irritated at the assumption that it’s okay to talk about an entire group of people as if we all have the same defenselessness as a young baby (and that a young baby in a certain category being defenseless, means it’s okay to call everyone in that category defenseless — hey, I guess everyone can’t defend themselves then, yes?), than I am at the original thing people are objecting to.

“Internet eugenics.”

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The Trolls Among Us is an article about Internet trolls. Whose actions descend into the unethical and illegal more often than you might realize if you’ve never been the target of the more serious stuff these people engage in.

Weev, the troll who thought hacking the epilepsy site was immoral, is legendary among trolls. He is said to have jammed the cellphones of daughters of C.E.O.’s and demanded ransom from their fathers; he is also said to have trashed his enemies’ credit ratings. Better documented are his repeated assaults on LiveJournal, an online diary site where he himself maintains a personal blog. Working with a group of fellow hackers and trolls, he once obtained access to thousands of user accounts.

I first met Weev in an online chat room that I visited while staying at Fortuny’s house. “I hack, I ruin, I make piles of money,” he boasted. “I make people afraid for their lives.” On the phone that night, Weev displayed a misanthropy far harsher than Fortuny’s. “Trolling is basically Internet eugenics,” he said, his voice pitching up like a jet engine on the runway. “I want everyone off the Internet. Bloggers are filth. They need to be destroyed. Blogging gives the illusion of participation to a bunch of retards. . . . We need to put these people in the oven!”

What interests me about that quote is not that he spews forth the usual hate speech that trolls are famous for. It’s the extent he’s gone to harm other people for his own gain and amusement, far more than most people realize when dealing with the assorted insult-fests online:

Over a candlelit dinner of tuna sashimi, Weev asked if I would attribute his comments to Memphis Two, the handle he used to troll Kathy Sierra, a blogger. Inspired by her touchy response to online commenters, Weev said he “dropped docs” on Sierra, posting a fabricated narrative of her career alongside her real Social Security number and address. This was part of a larger trolling campaign against Sierra, one that culminated in death threats. Weev says he has access to hundreds of thousands of Social Security numbers. About a month later, he sent me mine.

Trolls have also done things like go onto epilepsy forums and post rapidly-flashing images. Which Weev claimed to be uncertain about the morality of. (But supporting genocide, disability hate speech, libel, hacking, extortion, and who knows what else? No problem.)

Some other interesting quotes from the article:

Is the effort to control what’s said always a form of censorship, or might certain rules be compatible with our notions of free speech?

One promising answer comes from the computer scientist Jon Postel, now known as “god of the Internet” for the influence he exercised over the emerging network. In 1981, he formulated what’s known as Postel’s Law: “Be conservative in what you do; be liberal in what you accept from others.”
[….] The human equivalent of this robustness is a combination of eloquence and tolerance — the spirit of good conversation. Trolls embody the opposite principle. They are liberal in what they do and conservative in what they construe as acceptable behavior from others. You, the troll says, are not worthy of my understanding; I, therefore, will do everything I can to confound you.

For what it’s worth, I do believe that rules are compatible with free speech. In my country, even the people who built freedom of speech into our highest set of laws believed that. I’m never too comfortable (in fact, I’m highly uncomfortable) with an absolutely rigid set of rules, because ethics can change drastically based on the situation and the rules can never be written in as detailed a way as to account for all situations. So maybe I’d say that limits are compatible with free speech, and I have no ethical problem at all with limiting what people can post here.

Such limits aren’t censorship (I don’t even control their ability to post anywhere else). In fact, I don’t think that there would be a whole lot of free speech on here if I allowed in every sociopath who tries to come on here and mess with people’s minds enough to scare them off. There’s an implicit threat in that kind of behavior, and that threat prevents people from speaking their minds. I also moderate posting to protect innocent posters from such people — people who post overly personal details about themselves or other people, such as telephone numbers and other such information, I’ll edit out, or else (if the thing seems to be written to me like a personal email to me) reply in email and delete the whole thing. Usually I note that I’ve edited it. One time a long-time poster tried to unknowingly point a stalker to information about their victim that I knew would be misused, and I sent him a long apologetic email in private and deleted his comment.

Basically, it goes back to what my school principal told the class during an assembly one day: “Often when children are sent to my office they say, ‘Well it’s a free country.’ And I say ‘Yeah it’s a free country, but that doesn’t mean you’re free to punch him in the face.'” Except that, apparently unlike my principal, I have no illusions about the USA being a free country (or the entirety of the Internet — it amazes me how many people talk about the “first Amendment rights” of Internet users in general, without apparently realizing that not all of the Internet is in the USA). Most people who’ve been on the wrong end of oppression in this country know that, and it’s even penetrating into the minds of the mostly-privileged lately. But that’s a whole different tangent.

I also don’t (anymore) allow people to come here and post the overused arguments designed to shut down attempts by disabled people to advocate for our rights. I’ve given a summary by Jim Sinclair of those arguments in my about page, and I’ll put it here as well. It’s from xyr History of ANI. After xe describes an attempt by some members of the Autism Society of America to spread false rumors about xyr not being autistic (even though some people on the ASA board had seen Jim’s records and testified under oath that xe was autistic), and even to attempt to interfere in xyr friendships with other autistic people, and notes that Donna Williams was getting the same kind of slander campaigns and harassment after her book was published, xe writes:

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different category and saying that I don’t have any right to speak. It upsets me because I take it that they don’t want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven’t had the opportunities to experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists’ demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: “Give us the facts, we will take care of the philosophy.” Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.

So I won’t allow those tactics on here, provided that I notice them. And I offer no guarantees of perfection in noticing them. (Someone once noted in comments that some of my earlier posts and comments to them violated my current policy, and that’s correct. I don’t always go back and modify things, and even when I do, I can’t catch everything. I’m also human and therefore not remotely immune to the problem of sometimes being unable to live up to my own standards, and unable to notice this about myself.)

I also (although this is trickier because things can be subtle) have an anti-gossip policy and try to take that pretty seriously. As Laura Tisoncik noted, “Gossip is the enemy of all communities.” Same caveats apply though from the previous paragraph.

Even though that’s all quite an extensive list of things I don’t tend to allow, there are more things I do allow than things I don’t. I don’t post things from people who are trolling or engaging in other predatory activities online, but those tend to come in clumps and most of the time there’s almost nothing to delete. Then for a week there’ll be a ton of it, then nothing. I have only had to use the anti-gossip policy and the thing about disallowing tactics that shut down self-advocacy discussions, on a handful of occasions. The vast majority of the things I delete are when people unintentionally post private information such as phone numbers and street addresses. That’s unless you count spam.

I do allow disagreement, and not just calm disagreement but most angry disagreements too. I don’t see anything wrong with disagreement within certain limits. (I’m obviously not going to post something where someone’s saying that nobody here is autistic enough to involve ourselves in autistic self-advocacy.) I don’t see anything wrong with people being pissed off at me. Sometimes if people don’t yell at me I don’t know I’m doing anything wrong. I can sometimes get defensive and irritated in response (some of my friends might say that’s an understatement at times), but that’s my problem, not theirs. Frankly I get much less nervous around people who are willing to call me on stuff, than people who act like I can do no wrong. With the second group of people I always wonder what’s going to happen when the pedestal drops, and what would happen to my ego if I acted like these people were accurate in their assessment of me.

And if your post doesn’t show up — most of the time that means it’s fallen into my spamtrap, which gets overzealous. My spamtrap also likes some people more than others for some reason, as Andrea Shettle knows way too well by now. I try to search through it for people’s stuff, but it gets eaten a lot. One time there was some minor drama because someone who was pissed off at me already (see previous paragraph) thought I’d deleted his posts because of that, but it turned out they were in my spamtrap all along.

Anyway, basically… there are predators online ranging from people who engage in mild bullying to people who try to systematically destroy people either mentally or physically, and I’m not going to decide in the name of free speech to give them a space to comment here. I think such people do more to stifle free speech than to promote it, and I no more allow them on my blog than I would allow them in my front door.

Which might explain why they instead periodically hack into our server.

Back to the article:

Fortuny calls himself “a normal person who does insane things on the Internet,” and the scene at dinner later on the first day we spent together was exceedingly normal, with Fortuny, his roommate Charles and his longtime friend Zach trading stories at a sushi restaurant nearby over sake and happy-hour gyoza.

I wouldn’t call the things he does insane. I would call them cruel. Cruelty is in many ways normal, and often tolerated or even encouraged. And people who get labeled insane are no more likely to be cruel than anyone else, but are far more likely to be the victims of cruelty. But the wonders of ableism make ‘insanity’ a synonym for cruelty, and ‘retard’ the ultimate in dehumanization and the ultimate excuse for talk about eugenics and genocide.

Plus, even most sociopaths (who I don’t consider ‘insane’, but I do consider very very cruel) are said to look normal, even charming. Not all do, but many do. I’m not saying all trolls are sociopaths, but their behavior can be identical, even if they’re just ‘normal’ people spurred on by some unholy union between the dehumanization of the Internet, the dynamics of groupthink, and societies that more or less encourage cruel people to flourish. (And unlike a lot of people, I don’t consider ‘sociopath’ a medical category, just a convenient and recognizable word for people who are consistently and alarmingly unfettered by conscience.)

I’ve seen the websites (ones not even mentioned in the article) of organized trolls before, and they read just like a horrible playground conversation. These people create sites that openly state their intent is to mock people and to laugh about it. And as evidenced by the conversations in the newspaper article, they don’t care what damage they do to their victims. Some of them rationalize it, others are just happily and unashamedly nasty.

But not all trolls are open about it. Many attempt to appear earnest, even creating entire false personas to drag people in emotionally, either to obtain private information for harassment or blackmail purposes, or to convince naive people to defend them in arguments. Others don’t find that worth the hassle and create sockpuppets instead.

What’s alarming are the things they use (if anything) to justify their behavior:

As Fortuny picked up his cat and settled into an Eames-style chair, I asked whether trolling hurt people. “I’m not going to sit here and say, ‘Oh, God, please forgive me!’ so someone can feel better,” Fortuny said, his calm voice momentarily rising. The cat lay purring in his lap. “Am I the bad guy? Am I the big horrible person who shattered someone’s life with some information? No! This is life. Welcome to life. Everyone goes through it. I’ve been through horrible stuff, too.”

[…]

[someone said that trolling the epilepsy forum with flashing lights was crossing a line]

Fortuny disagreed. In his mind, subjecting epileptic users to flashing lights was justified. “Hacks like this tell you to watch out by hitting you with a baseball bat,” he told me. “Demonstrating these kinds of exploits is usually the only way to get them fixed.”

“So the message is ‘buy a helmet,’ and the medium is a bat to the head?” I asked.

“No, it’s like a pitcher telling a batter to put on his helmet by beaning him from the mound. If you have this disease and you’re on the Internet, you need to take precautions.” A few days later, he wrote and posted a guide to safe Web surfing for epileptics.

[…]

The willingness of trolling “victims” to be hurt by words, he argued, makes them complicit, and trolling will end as soon as we all get over it.

These are the same excuses used by people who fail to do anything about bullying in schools, and the same excuses used by many child abusers towards their victims: It’ll toughen them up enough to be prepared for life’s cruelties.

But they’re BS excuses. Just because the world is a cruel place doesn’t mean you have to be. The answer to cruelty isn’t more cruelty. I’ve been to hell and back, and I’ve learned from those who are or were cruel to me, but I’ve learned even more from those who taught me how to deal with cruel situations than those who caused the cruel situations in the first place. (Of course, nobody is black and white, and in a couple cases people who were cruel to me at one point are still people I’m on good terms with. But they’re also not cruel anymore.)

I wrote a song several years ago to people stuck in that mentality. I’ve posted it before but it bears repeating.

They say life on a battlefield
Is sink or swim
And only the strong survive

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time,
now it’s your turn”

We learned our lesson too well
We’ve taken our hell and passed it on
“It will make you strong,”
We say as we turn away

How easy is it to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell

They were as strong as we
But we can’t see this to be so
For it would show how little power
We had in the hour that they died

And we honor our fallen comrades
With a rousing inspirational speech
“You are our successors,” we say
“And there’s no room to be weak
Because life on a battlefield
Is sink or swim
And only the strong survive”

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time
Now it’s your turn”

We’ve learned our lesson too well
We’ve taken our hell
And passed it on
“It will make you strong,”
We say as we turn away

And how easy it is to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell
Consumed by the hell
We recreate
In the name of memory

Or in other words:

The problem with sink-or-swim approaches is that some people sink. And it would completely dishonor the memories of people who have died as a result of cruelty, to perpetuate the very same cruelty that killed them. To claim it makes people strong makes it sound as if these people didn’t exist, or were weaker than people who survived, even if it’s only luck that determined some people’s survival over others. And I refuse to participate in, or glorify, practices that can and do ultimately kill people and then degrade even their memories. Like so-called “Internet eugenics”.

And like they said earlier in the article — it’s the opposite of a properly-functioning society. They want the leeway to do anything they want, but give others no leeway at all. No matter how much they dress it up, there’s no ethical justification for that, and I suspect they know it.

Edited to add: I just remembered something I hadn’t thought about for a long time.

When I was nineteen I had a different autism site. I was also at that age very vulnerable, and very bad at hiding my vulnerability. (Which is one among several reasons I eventually took it down, another being that I wasn’t at the time satisfied that half the stuff I was posting was really stuff I thought, or just more attempts to conform to a pattern I thought I ought to conform to.) The stuff from it I continued to think might be useful (whether I continued to fully agree with it or not), I moved to the autistics.org library.

Anyway, I started getting these weird emails. One of them gave me detailed instructions for killing myself, and said that if I didn’t do it they’d finish the job for me. My family was alarmed and contacted the FBI. But back then there wasn’t even a pretence of caring about cyberharassment, and my parents were just told that if it was online it wasn’t a problem. (Unfortunately, by now the world has learned differently from experience.)

Eventually the problem was found out, can’t remember if it was by me or by someone else — my website address had been posted to a trolling site. The section about changeling mythology, Otherkin (a community of people who either believe themselves to be non-human or roleplay themselves to be non-human, depending), and my own longstanding connection to and interest in those topics (especially the idea of being an elf), had been pointed out in particular.

There was a lot of undisguised mockery in the ensuing discussion, to be sure. But my main reason for editing this post to add this to it, is one of the comments that was given on that site, the one I to this day find the most indefensible and the most descriptive of the fact that many trolls know exactly what they are doing. It read something like the following:

“She looks vulnerable. Let’s go mess with her mind.”

How did you figure out that this was a pattern, and what made you realize it?

Standard

I suppose the question in this post is for anyone who’s faced discrimination for what sort of person they are, or watched others (such as their children or clients, given that I know a lot of parents and professionals read this blog) face discrimination for the same.

When did it hit you that this (an actual pattern of discrimination, etc.) is what it was? As in (any combination of the following, or anything that seems related that I’ve forgotten to add, and switch the questions around to be about another person if you’re not thinking of yourself here)…

…that it wasn’t a bunch of isolated incidents of injustice or unpleasantness?

…that it wasn’t your fault, or something to do with you alone?

…that there was actually a pattern to this?

…that it was actually real, and not imaginary or in your head?

And what thing(s) made you realize this? (Which could be sudden or gradual or combinations of both, or anything else.)

I’ll answer this as well:

For my part, it’s hard to say exactly what all the little pieces were that I started with. I knew certain things were wrong, or that they ought not to happen. And then I gradually got used to them happening, and happening to me, as something inevitable. But I’m very certain of the two things that made it stand out to me.

The first was that as I gained more precise communication, and was finally able to put huge amounts of my actual thoughts together into words on a regular basis, and really have that be a more or less stable ability, and also gained a lot more self-awareness, and a lot of other things… it still happened. People still treated me badly. I had decided at some point in the past that the only reason people treated me badly was either because I was having a hard time communicating (at best), or I was, in my efforts to figure out what exactly I ought to say, communicating things that were untrue (at worst). I thought that if I were able to say exactly what was truly inside my head, things would be better. And they weren’t. It had been something I experienced as a drastic change, but some other people didn’t, or didn’t see it as enough of a change, and some even (to my immense surprise and disturbedness) told me that they liked me better before. (As in, back when whether what I said bore any resemblance to my thoughts was random and barely if at all under my control. To hear that they liked me better like that was a massive shock.)

The second thing had to do with people I looked up to a good deal. At the time this realization was going on, the people that come to mind are Jim Sinclair, Cal Montgomery, and Laura Tisoncik. I had varying degrees of actual communication with them (and varying degrees of conflict, for that matter), but they were all people who impressed me with assorted combinations of integrity, clarity, honesty, and wisdom, and who had a lot of influence on my understanding of things like disability politics.

So here were these people I thought of as some combination (different for each) of strong, clear, wise, competent, of good character, and all these assorted positive things that I did not at the time believe possible for myself even though some of them kept telling me they were possible for anyone.

And then I saw them talk about getting all the same sort of discriminatory bullcrap that I got all the time. And I saw them talk about being treated as inferior, worthless, pointless, empty, stupid, dead, and whatever other ugly stereotypes can be conjured up.

And that’s what it finally took for me to put it together, that when I was treated that way, it wasn’t because of something I did wrong. That I’d be treated that way even if I wasn’t the colossal screwup I believed myself to be. (And that maybe, possibly, I wasn’t so much of that as I’d thought.) I somewhere along the line had internalized the view that all these things happened to me because I must be inferior, worthless, pointless, empty, stupid, and dead, not to mention a whole lot of other things.

So it was the combination of changing a great deal internally but still meeting with the same old crap all over again, and watching people I admired for all sorts of traits I didn’t think I had, getting treated the same way. And that’s what made me grasp that something was going on beyond just me being a failure and getting what I deserved. Like so many such realizations, in hindsight I had all the pieces of it, but I hadn’t put them together yet, or if I had they hadn’t come together in any permanent fashion. And those two things were what it took for me to finally get it.

By the way, Dave Hingsburger wrote a way more intense version of assorted political realizations around disability, called Mourning Has Broken. When you follow that link, be aware that there’s one word written as “chickens…” that makes no sense unless you know those dots are in there to blot out “chickenshit”, and the sentence makes absolutely no sense without knowing that. This was written when he was a non-disabled staff person. (He’s now a disabled staff person. And a prolific blogger, who blogs here.)

I think I first read that article in an issue of Mouth Magazine called Waking Up. And I guess “waking up” is exactly the sort of experience I’m asking about in this post, because I’m curious how, when, and whether it has happened for other people. (And it doesn’t have to be specifically about ableism, either, just anything similar. Nor does it have to be specifically about the exact questions I asked, just anything similar there too. I’m not at all able to cover all possible bases so please fill in the blanks — or not — as you see fit.)