Monthly Archives: September 2008

“I Am Gonna Write You Up”

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Peter Leidy is a case manager (I think that’s what it said, anyway) who writes song parodies about the disability service system, from several perspectives. I think he also writes political songs, but I haven’t heard them before and haven’t been too interested because they’re all about Wisconsin. So far I have his first two “human serviceland” CDs, but not his third. The first one is very good, the second one varies from very good to almost painfully naive-sounding (I can’t tell if it’s ironic or if he really feels that way about those topics), and the third I haven’t heard yet.

Anyway, I found out he’s got some free MP3s out there on the same page he’s got some of his CDs for sale on. And one of them “I Am Gonna Write You Up,” I don’t know what perspective it’s intended to be written from, but it reminds me of the worst kind of power-tripping staff (many of whom are probably blissfully unaware that they are power-tripping at the time, and who think they do an excellent job, and may even be thought by others to do an excellent job and be “good with Those People” and so forth).

It reminds me of the time I, for instance, got written up simultaneously as violent (without having actually touched anyone), AWOL (while being an adult allowed to leave any place any time I wanted to), and trespassing (for being physically unable to stop walking until I literally walked straight into someone’s fence, which was not at all trespassing under the law of the area I was in at the time). I was finally decided not to be punishable for those things, after other witnesses (as well as physical evidence) made it clear that I hadn’t done what those words said I’d done (although there were attempts to slander one of them as well, she was described by the writing-up person as a “renegade staff” o_O — presumably because she, at the time, told the person to stop getting in my face and screaming at me, and listen to what I was saying).

And it’s a great song, so you might want to try downloading it.

Lyrics behind the “more”, for anyone who can’t hear it or can’t make out the words.

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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.