Score one for the handicapped!

The image at left takes you to a comic page PSA (public service ad) from the 1950s and '60s, Score One for the Handicapped. There you will find the intrepid good boy, Buzzy, scolding bad boy Wolfie about his attitude toward their deaf acquaintance. You'll also find that said deaf acquaintance is most assuredly not Deaf. It's an interesting look at what inclusion meant 50 years ago.

Have I mentioned I hate migraines?

Sunday, I developed a migraine to go along with the shredding feeling in my joints. As a front moved in during the night, I lay awake hoping the weather would get worse, faster, instead of hanging on and on and on.

And so I got up Monday feeling as bad as I went to bed on Sunday. And then Monday was the worst, busiest, most hellish workday in quite some time. Afterward, I couldn't even drive home for three hours.

Surely Tuesday would be better, right? Well, at least work was better. And the migraine had moved into my abdomen, clenching my head only every few minutes instead of constantly. And my joints were doing better.

Wednesday, I finally saw the doctor to get something for the migraine. There is no way that medication is worth $240. If I hadn't already been sick to my stomach, seeing that pre-insurance portion of the bill would have made me nauseous all on its own. As it was, I had to pay $70 for something that didn't do a darn thing for the abdominal migraine--unless you count the ability of a med to be vomited to be something worth paying for. Work went OK, in between the puking. Oh, and Doc? I appreciate your assumption that I would stay home and rest and take care of myself, but if I was to do that every time I felt pain or nausea, I'd need to go on disability. And how would my rent get paid that way? Not very well, thank you.

My migraine finally mostly broke Thursday. Yay! Did that expensive medicine do it, or the fact that the freaking front finally finished moving in? I suspect the front.
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Edited to add:

My friend Dr. Kindberg says that most migraine medication taken after a migraine has already started in earnest will take 24 hours to work. So maybe it was the Zomig working that broke the migraine. I've used it earlier on since, and have managed to ward off any lengthy pain, despite having spent the past month in the throes of moving house, which has disrupted all my routine. Still, that's damnably expensive stuff.

Doctors. Grrrr.

Elizabeth, over at Screw Bronze, was relating her frustration with her doctors, especially with how they ignore her activity level, assuming that she just lays about all day. This got me going:

Doctors will simply not believe that you are active. Maybe it's something they only do with women, but I have found it to be true ever since I was a teen. That's when I went to the doctor to ask why my hands and feet were always cold, and the fat, chain-smoking fool told me that I just needed to run a couple of laps every day. I was in high school. I took Phys Ed. I ran every day, slowly and badly, but I ran. I also regularly walked the three miles home from school. And Dr. Fool was telling me I needed to exercise.

Same crap when I asked another doctor about why I couldn't improve my stamina climbing the stairs and the hills. Never mind that I was doing it every goddamn day and had been for over a year, and it still wasn't getting any easier.

Same crap when my joints started dislocating or being constantly painful. I'm supposed to exercise? Hey, idiot, there are plenty of people less active than I am, and they never dislocate a single joint or lose the ability to turn a door knob.

Grrrrrrr.

Sore spot with me? Yes, you hit it.

Elizabeth then asked:

Your doctor experiences sound WAY more frustrating than mine - did you eventually start taking a large friend or a mallet?

So, I'm continuing my rant here.

Naw. I respond by mostly avoiding the doctors. No matter what happens, I generally feel that seeing a doctor isn't going to make things any better and will likely only result in pointless testing that reveals nothing useful. What good does it do to find out X, Y or Z if nothing will be done about it anyway? So I save myself the aggravation and just don't go.

When I have gotten things I needed, it has been because I knew exactly what I needed before I went to the doctor and demanded it. I knew I needed splints for my thumbs and fingers. I demanded I get them--though I first had to go through the hurdle of seeing the goddamn neurologist when I already freaking know that what is wrong with me is mechanical. Grrrr. When I badly dislocated a knee, and knew I needed surgery on it, the orthopedic surgeon kept putting me off, telling me to just stay off my feet for a while. Not like he ordered me up a wheelchair, either, so how does that work for over a month? I finally took myself hostage, a la Cleavon Little in Blazing Saddles. When he started to give me the usual line, I stopped him and said "You said I'd be fine by now. So I must be fine. I guess I'll start going back to practice martial arts and walking up hills. Because everything is just fine now, right?" This I said though I couldn't bend my knee and it was still swollen. Amazingly, he scheduled the surgery to remove the broken bits of meniscus for the very next week. And he was, oh so surprised to find out that I had virtually no ACL left. And he had seen me reduce my jaw when my TMJ spontaneously dislocated (he was astonished), but he still couldn't put 2 and 2 together.

Of course, a surgeon eager to cut is just as bad and often even worse.

There was the idiot doctor that convinced my 89 year old grandpa to get a new hip replacement. No, my previously healthy grandpa did not survive that. He probably had another 10 years in him if he had just used a cane instead of a getting a surgery.

And you know what happened to my grandma.

I suppose I could talk about the failed surgeries for uterine prolapse that my mom had, that ultimately resulted in a failed surgery for rectocele.

So, as far as I'm concerned, doctors aren't worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place. The worst thing would be to be in your position, Elizabeth, knowing something is wrong but not what to do about it, and thus having to be subjected to fumbling pin-the-tail-on-the-donkey testing month after month as things get worse. I've been in that situation, but I knew I wasn't dying, so I could opt to stop. I'm angry on your behalf that you are being treated as lackadaisacally as I have come to expect, when they should be pulling out all the stops to find out if there is something that will stabilize your condition.

edited to provide context and to clean up typos

Dear Canada

Can we borrow some of your judges?

I ask because I read this article in the Globe and Mail, which discusses why the Ontario Court of Appeal found in favor of Kevin Keays against Honda.

A couple of years after Kevin Keays's grim struggle with chronic fatigue syndrome began to play havoc with his work attendance at an Ontario Honda Canada plant, co-workers took to mocking his constant absenteeism with cruel cartoons and resentful ridicule.

With workplace morale in a tailspin and their patience spent, Honda managers decided the situation was at the point of no return. They fired Mr. Keays, spawning a bitter court battle that resulted in a record-setting damage award for him - granted by a judge who blasted the company for an "outrageous" campaign of intimidation against Mr. Keays.

The case is to be heard on appeal by the Canadian Supreme Court. Best of luck, Canada!

Against Stigma

Over at Writhe Safely, Flawedplan says what I have been thinking about the liberal response to incidents like the NIU shooting in WaPo Good, Huffpo Bad.

Bleah

My neck has been squeaking all day. And thus my head has been hurting all day and my gut upset. I had hoped it would get better but it seems to be getting worse. God, I hate the noise of squeaky neck.

Grandma

My birthday was Valentine's Day. I spent the day with my daughter, who took me shopping. It was a great day, with my favorite companion and I both us finding jeans that fit and her not having any notable seizures, and both us our legs holding out much longer than usual. Because I spent the whole day with MD, I didn't get to spend any time with my parents until today. Mom was quite eager to give me a gift, but I didn't imagine it would be so wonderful.

First, she made sure I read the card: "Everytime I say or write [your name], I am reminded of my mother. Your grandmother loved you more than she could ever express and that is why I am giving you this gift. She would be most pleased and happy."

The gift is a necklace of crystals and silver that needs to be restrung. My grandmother wore it when her children were young, so my mom and her brothers slobbered all over it, tarnishing the silver. That makes it even better, I think.

I was named after my mom's mom, and miss her greatly though she died over 20 years ago. It was years before I stopped crying abruptly every day. Grandma was the pillar of our family.

Grandma wasn't always a pillar, of course. Her childhood and young adult years were hard and her choices not always the best. Her mother was an un-enrolled Cherokee; her father a teamster home long enough only to father another child. At twelve, Grandma was set out to work in the houses of better-off townsfolk. She became something of a groupie, leaving her hometown to be on the road with a vaudeville musician. She married her vaudevillian, but after 2 kids, he ran off, leaving her, a flapper and a stranger, in a small town. My grandfather was taken by her exotic looks and, an orphan himself, eager to step in as father to two small boys. My mom came along shortly after they were married.

Grandma kept her thoughts and feelings to herself. She didn't hug or kiss more than the expected hello and goodbye. But she was a never-ending fount of pies, cakes, home-made clothes, and wonderful summertime visits. I would spend a week with her and Grandpa, all by myself. I spent the time reading, daydreaming, and poking about. I'd help hang out the laundry on the line or ineffectually assist in her constant gardening. I'd try on every outfit in her closet--she never threw any of them out. She was order without rigor, standards without rejection. She traded plates of food with her neighbors at holidays, pumpkin pies and chocolate cakes in exchange for tamales. I am not sure that a day ever passed without dishes being returned or picked up--and no dish was ever sent or returned empty. Anyone who had any business with my grandparents came to the backdoor. Only strangers came to the front, and there weren't many of those.

Grandma had chronic health problems. Her doctors were way too eager to cut into her without really knowing what was wrong. In midlife, she lost both breasts and much of her back and chest muscle to a double radical mastectomy, but turned out not to have had cancer at all. Much of her bowel was resected, for reasons I never knew but that I suspect were due to prolapse and attempts to repair previous botched surgeries. She was prepared to die many times, but hung on, I felt and still feel, because we needed her so much. When she had been very poorly for many months, she asked when I would come see her. I made a point of going then, and she and I sat in chairs on her lawn. We talked a bit, but mostly shared time. I told her I loved her. Shortly after, her condition worsened. She refused any further surgeries and, having already said goodbye to her grandchildren, died. She was 85. Life came apart then, but I think that we've all put it back together pretty well.

There is no marker where her grave is. There is, instead, my mom. I'm nearly 50 now. Someday, it will be on me to be the marker she is. I hope I will be as good a neighbor, as nonjudgmental, as perservering, as wise, as my mom and my grandma.

To Boldly Limp Where No One Has Limped Before

Incited to embrace my geek self by Emma (so blame her), I'm going to write a bit more about Star Trek and disability. I brought it up earlier, talking about "Is There in Truth No Beauty?" (ITITNB) in reference the the blind acupuncturist story.

Emma mentions Geordi, the blind engineer in Next Gen, asking how his situation compares with that of Miranda Jones. I'm not all that hep on TNG, so be ready to flame me with the hot coals of Trek wrath for my faulty knowledge on that score. But as to Miranda Jones in ITITNB, I will dare to speak.

Jones is introduced as an anomaly, a telepathic human who went to Vulcan to learn how to shut out the voices and emotions, both hers and others', that invaded her consciousness, as well as getting a respite there by being around people who knew how to keep their thoughts to themselves. She went on to become a psychologist, a profession in which being able to read other's thoughts might be an advantage. She's on board the Enterprise to assume a post as ambassador among a species that only communicates telepathically. That species, the so-called Medusans, are said to be so ugly that looking at them induces insanity. This is pretty unbelievable, since when Kollos, the Medusan ambassador to the Federation, is shown (to the extent that it is), it appears to an energy creature that can hide in a box. Maybe there's some sort of optical trigger that gets set off in corporeal minds, that is understood by those dealing with the unfortunates who had been exposed as "ugly." That I could buy, coming as I do from a personal background of migraines and seeing MD's seizure troubles; there's nothing like a bad flicker to make life unpleasant and painful.

OK, where was I? Oh, yes. Miranda Jones. Seems she was second choice for the job, which was originally offered to Spock. And seems she is feeling that others think she must be inadequate to the task if she was second choice, so one of her fashion accoutrements is a giant chip on her shoulder. The other is a fantastic web-like lacey affair that she wears over all her other clothes. It's quite lovely. I want one. And it is what makes Miranda Jones like Geordi LaForge. With it, she can sense the physical world around her, even being able to read heart rates and body temperatures. Seriously, why isn't everyone wearing one of those things? Looks great and beats the heck out of LaForge's plastic hair accessory. The other fashion accessory introduced is the IDIC, a piece of jewelry that Spock describes as representing Infinite Diversity in Infinite Combinations. Jones thinks he's wearing it rub in her face that he's a better telepath than she is. Whatever his reasons, the idea of IDIC plays throughout this episode.

Back to our story. The sensory features of Jones's fashion statement are not revealed to the command crew until well into the episode. Before then, she gets the opportunity to jilt a lover, who decides that he can change Jones's mind if he shortcircuits the mission through murdering Kollos. Bad Decision Dinosaur would approve, for the obvious result is bwahahahahaha madness (not your garden variety mental illness, but the kind common only in Gotham City). In his agitation, loverboy Larry overcomes the entire engineering crew, navigates the ship to some unknown place outside the galaxy, and conveniently dies. The Big Three decide that their only option to finding their way home is for Spock to mindmeld with Kollos, since the Medusans have mad skillz in interstellar navigation. Jones would try to stop Spock, so Kirk decides to try his own loverboy routine on Jones in order to distract her.

With Jones and Kirk alone in the ship greenhouse, we learn that Jones went to Vulcan not just to get telepathic training, but to get away from human emotion, of which the worst, she says, is pity. Totally convinced of his own irresistable charm, Kirk yammers on about how she's going to miss being with her own kind, seeing and touching other humans. He moves in to close the deal he's making, inadvertantly exposing his thoughts to Jones. Too late, she races to stop Spock. Kollos has agreed to the plan (Spock having worn some sort of red filter that makes chatting with Medusans no problem whatsoever for Vulcans). Jones protests that she could learn all about navigation intantly and that it would be less dangerous for everyone if they let her do it instead. It's at this point that McCoy spills the beans about her blindness, telling her that piloting a starship is not among the things that her accessability device allows her to do. Spock and Kirk marvel at her overdress, Spock obviously geeking out on the tech. Seriously, if circumstances were different, Spock and Jones could completely hang together. They're both aloof, intelligent, annoyed by emotional display and willing to take chances. Spock asks why she thought it was necessary to conceal her blindness, what with it being so handy in dealing with the Medusans. Kirk, who previously had been baffled by her comment about pity being the worst of all human emotion, now buys a clue into the social model of disability, completely seeing her point that there were people who not let her succeed on her own merits if they knew she was blind.

Kollos, in its box, is brought to the bridge and placed behind a temporary divider. The meld goes smoothly, the ship gets safely home, and Spock/Kollos forget to put the red filter glasses back on. Thus the unmelding results in a dangerously agitated Spock, who gets put down with a phaser and dragged off to Sick Bay. Kirk and McCoy implore Jones to mindmeld with Spock, in hopes that she can bring him around. She reluctantly agrees but after several hours, there is no improvement. McCoy is resigned to Spock dying, but Kirk wonders if Jones is actually trying, what with her being professionally jealous of Spock. He barges into Sick Bay, where he finds that Jones has removed her webbing thing. He doesn't mention it, but picks it up, looking at her as she keeps asking who has entered. He glowers in fury, taking her relative state of undress for indifference. He then launches into her, saying that he thinks she's a cold-blooded jealous bitch who doesn't care about anyone but herself, and that if Spock died, it would be her fault for not giving a rat's ass. He storms out, leaving Jones standing like someone just hit her in the face with a particularly smelly mackerel. Kirk tells McCoy that he wasn't sure he did the right thing, seems confused and troubled by her being actually blind: "She was blind. Really blind. Really in the dark." Or is he referring to her not understanding her own feelings? But Jones shows that she can take criticism, deciding that she really wasn't trying very hard. And how does she show this? She puts on the lacey overdress, right? Nope. She leaves it where it was, and turns around to put her heart into getting Spock back to his usual self.

With Spock restored, Jones and Kollos prepare to leave the ship. Before departing, Jones thanks Kirk for the chewing out, saying that it enabled her to understand herself. After all, she had made it a point to block out her own feelings, so she really had become unaware of the scope of her motivations.

What did this episode really have to say about disability? Blindness was never presented as a hindrance to Jones in anyway. It was, in fact, a useful characteristic because it allowed her to deal with the Medusans directly. The disabilities she faced were societal (pity, and a lack of accessibility) and the usual individual ones that cut across the whole of humanity (jealousy, lack of personal insight).

Now, how does that one episode compare to the many in which Geordi figured? Well, Geordi doesn't feel a need to hide his blindness, so there's obviously been some progress. And for both, there is never a question among the humans about their right to existence as people with disabilities. I guess that's one of the lessons learned from the terrible Eugenics War of the 1990s. But I like that, for Jones, blindness is a trait that can be good, part of the entire package which makes her ideal for her job, and is otherwise no more important than the color of her hair. I don't remember Geordi ever being in a situation where being blind was an actual good, though I do remember a couple of episodes where it made him the weak link in the chain. I don't include having tech as part of the actual good. Jones being blind was good whether or not she wore the lacy thing. Geordi being blind was good only when being able to hack the banana clip was useful.

TOS took a similar approach to disability in "Plato's Stepchildren." There it turns out that Alexander's dwarfism is actually a good thing, because it has saved him from the fate of being an Insufferable Prick. He's the one that, as a viewer, you are expected to identify with: The little guy (both figuratively and physically) being pushed around by powerful interests mostly concerned with increasing their own standing. Kirk assures Alexander that, when he leaves the planet with them, that there will be plenty of other people of short stature and that being a dwarf wouldn't be any barrier to him. Even though showing rather than telling would be more effective, we are supposed to assume it is true. Probably that Eugenics War legacy, again. What I really like in "Plato's Stepchildren" is that Alexander--when given the choice--makes a conscious choice to identify as disabled in a society in which the only disability that matters is lack of telekinesis.

They were treating you the same way they treat me, just like me only you fight them. All the time, I thought it was me, my mind that couldn't move a pebble. They even told I was lucky they bothered keep me around, and I believed them. The arms and legs of everybody's whim. Look down. Don't meet their eyes. Smile. Smile. Those great people... they were gods to me. But you showed me what they really are. Now I know. Don't you see? It's not me or my size. It's them! It's them! It's them!

When offered the drug that would counteract his "biochemical deficiency" also responsible for his dwarfism:

You think that's what I want? Become one of them, become my own enemy?

Look at that. By himself, Alexander had adopted his society's disablism. But when he had the chance to bond with other non-telekinetics, he came to respect himself and understand the social model of disability. Isn't disability culture a beautiful thing?

Of course, not all is sweetness and light for folks with disabilities in the TOS generation. Despite all the progress made on other fronts, medical care for veterans injured in the line of duty remains grossly inadequate. Just ask Capt. Pike.

The Short Bus, prologue

I'm currently reading Jonathan Mooney's new book, The Short Bus. I've decided to post reviews as I read it. Meaning, not only post for each part of the book, but in the manner in which I read. This means that there may be a lot of digression. Have you any idea how many good books I never finish because I get stimulated to think of something else with every sentence? Of course, you don't, because I have never told you before now. I'm intent on not getting distracted, so putting out my thoughts as they come to me should help. And afterward, I'll assess the book as a whole. If you are also reading this book, please feel free to throw in your own comments. (Full disclosure: Mr. Mooney gave me a copy to read, for the purpose of sharing my opinion.)

So, we get to begin with my favorite part of any book, the prologue. It's my favorite because I get a sense of what to expect. I'm a great one for reading the beginning of a book and then getting restless part way through and skipping to the end. And then reading the middle if I liked the end. I don't know if this will be one of those books that I get so restless I can't read straight through. From the prologue, I think the Mooney's writing style is inviting enough that I might be able to contain myself to see how the story plays out on his terms. Or maybe it will be so inviting that I just won't be able to help myself. We'll soon see, won't we?

Probably anyone reading this blog knows what a short bus represents. That's the half-size bus that the designated "special" kids ride, rather than have them ride with the "normal" kids. There might be a reason for having a separate bus pick up some kids. Goodness knows that your average school bus is barely accessible to your average, homogenized kid. You might think that the short bus should thus be representing inclusion and acceptance. But not every kid on the short bus needs special transport. No, there's something else going on there, and right away, Mooney gets to the heart of it by climbing back on the short bus. What the short bus represents is segregation and stigma, a singling out and demoralization of those who are different. But maybe it can also represent community and identity under adverse circumstances?

As a boy, Jonathon Mooney was diagnosed as having learning disabilities, and spent most of his early education in anguish.  Mooney talks about his feelings going to the special classes, and his frustration, to the point of suicidal despair, with the insistance of the system that he "try to be normal." I can see this is going to be a book exploring how ideas of normality are used to degrade those who just won't be homogenized. He admits that the message finally became his goal, that he sought to become normal, to avoid the "freaks" lest he share their taint. He thought he had accomplished this after his graduation with honors from Brown and the publication of his first book, Learning Outside the Lines.  He had pretty much acheived supercripdom, being introduced on his book tour as having "overcome" his serious learning disability.  But while he's on his book tour, encounters with children and adults who have not "overcome" bring him around to accept the part of him that he had been running from.  The process of acceptance leads him to buy the very symbol of his difference and stigma, a short bus, to take on tour throughout the United States.  To do what?  To celebrate his release from the constraints of The Normal? To seek out others like him?  He had thought it would be Afterschool Special material, but having shaken off that notion, went ahead with his road trip.  Ooh, good prologue.  I know to expect an interesting tale of adventure, but not what that adventure will bring.


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Digressive thoughts I'm willing to share:

By the by, this whole short bus thing is somewhat later than my own childhood experience.  Back when dinosaurs walked the earth, there were no learning disabilities. You were either "normal" or you had "retardation". Everyone who went to school, went to the same school as everyone else in the neighborhood, and we all walked.  If you couldn't walk, you didn't go to school.  Of course, there was still segregation and shame attached to learning disability, whether it had a label or no.  Kids with Down syndrome were in a separate part of the building and had separate recess (I really don't remember any kids in that class not having Down syndrome, but that might be a trick of my memory) and we were given the distinct impression that they were somehow under quarantine.  Kids with less pronounced learning disabilities were mainstreamed by virtue of not having resource to the modern panoply of labels.  Though they did get to enjoy the segregation enforced within the classroom of being made to sit or stand in the places of shame, or spend a great deal of one on one time with the principal, and if any of them had masochistic tendencies, they were in luck, for there were all sorts of interesting techniques of humiliation and pain available to the educators of yore.  


Troublesome students nowadays seem to get labeled autistic and sent to the resource room. There wasn't much in the way of "resource rooms" as they are now known.  But they weren't unknown, either.  Without my parents' knowledge, I was sent to the resource room equivalent for reasons that were never revealed to me as a child but that my parents finally divulged not too long ago.  Seems my stutter and tendency to write things backwards, and some picture I drew in second grade, did not meet with approval, so for two years, I was pulled out of class to go play Uncle Wiggly and Candyland with a couple of other weirdos.  Well, that's all I remember doing there. Childhood was very confusing.  Oh, wait, I think there may have been phonics and flash cards. At any rate, they succeeded in mostly replacing my stuttering with speech hesitation and overpronunciation of consonants.  And really pissing my parents off, who put a stop to it when they finally found out. Oh, I should say, I never heard it called a resource room back then. It was the "counselor's office," and only quiet oddballs ended up there.

Blind acupuncturist

A woman in Austin is trying to get licensed as an acupuncturist. She was turned down the first time, despite passing her classes and test, for the simple reason that she is blind.

My first impression, gathered from the article I read, was that the state licensing board was acting out of prejudice:

Meng-sheng Lin is the licensure committee chairwoman, and the Dallas acupuncturist said she's inclined to repeat her vote against [Juliana] Cumbo's application.

She said she's trying to fulfill her duty to protect the public.

Lin said acupuncture can lead to bleeding that if unnoticed could pose a contamination risk.

Good grief. A blind acupuncturist might cause bleeding? Heck, my sole experience with acupuncture was with a sighted acupuncture student, who seemingly mistook me for a voodoo doll. I have complete confidence that a blind person couldn't do any worse, and might potentially do something novel, like pay attention to what they were doing. I would sooner try it again with Ms. Cumbo.

But maybe I'm just being silly. Maybe, like piloting a starship*, acupuncture is one of those things that blind people just can't do.

But, no, apparently my first impression was the right one. Google Book Search brings me Understanding Acupuncture, by Stephen Birch and Robert Felt. In Box 3.2 on page 96, they relate Birch's "good fortune" in studying with a blind acupuncturist. Perhaps the Texas licensing board should buy themselves a few copies of this book.

There's a whole tradition in Japan of acupuncture being done by blind practioners. Some fellow named Waichi Sugiyama invented the insertion tube for the needles way back in the 1600s. Did I mention he was blind? He then went on to found acupuncture schools to teach the craft to others who were blind. Both the Kiiko and Toyohari acupunture styles were developed by blind acupuncturists, though also taught to those who have the misfortune of being distracted by vision. A third of all Japanese practioners are blind.

I'm now seriously wondering about the credentials of the Texas acupuncture licensing board if they don't know this history already.

edited 2/9/08 when I finally remembered the wording I was going to use

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*Star Trek, Original Series, "Is There in Truth No Beauty?" Dr. McCoy reveals Miranda Jones' blindness when she demands to be taught to navigate the ship. I rather like the episode overall--McCoy felt that her blindness was nobody's business up to that point. Maybe few writers in the 1960s just could imagine adaptive technology well enough to consider that perhaps blindness might not be the barrier they thought it must always be to driving anything? Aside from that, the message of the episode, that pity is inappropriate and serves to hinder the person objectified with pity, is well done. Jones has the regular assemblage of human failings, which drive her relationships and behavior, but among them is not her blindness. If she has a "handicap," it would be her telepathy--the superhuman sense she has--because it makes her extremely uncomfortable around other people. But that, too, is accepted as just part of "infinite diversity." OK, enough geeking out. Well, for the moment.

Isn't Yahoo in violation of the ADA?

According to Yahoo's service agreement, there is no recourse for people who have seizures from exposure to their blinking ads except to stop using their service:

A SMALL PERCENTAGE OF USERS MAY EXPERIENCE EPILEPTIC SEIZURES WHEN EXPOSED TO CERTAIN LIGHT PATTERNS OR BACKGROUNDS ON A COMPUTER SCREEN OR WHILE USING THE SERVICE. CERTAIN CONDITIONS MAY INDUCE PREVIOUSLY UNDETECTED EPILEPTIC SYMPTOMS EVEN IN USERS WHO HAVE NO HISTORY OF PRIOR SEIZURES OR EPILEPSY. IF YOU, OR ANYONE IN YOUR FAMILY, HAVE AN EPILEPTIC CONDITION, CONSULT YOUR PHYSICIAN PRIOR TO USING THE SERVICE. IMMEDIATELY DISCONTINUE USE OF THE SERVICE AND CONSULT YOUR PHYSICIAN IF YOU EXPERIENCE ANY OF THE FOLLOWING SYMPTOMS WHILE USING THE SERVICE: DIZZINESS, ALTERED VISION, EYE OR MUSCLE TWITCHES, LOSS OF AWARENESS, DISORIENTATION, ANY INVOLUNTARY MOVEMENT, OR CONVULSIONS.

This is ridiculous. It would be a simple matter for them to include a preference for non-blinking, non-strobing ads and backgrounds. Shame on Yahoo.

Insomnia

It's 1 AM. Every damn joint hurts. I dislocated a pinky trying to get up from my chair. Why did I think it was unnecessary to get splints for my pinkies? (Note to self: Next go-round on replacement splints, get pinkies armored.) It's a good thing there is a backspace key, because I am having quite a time of it trying to hit the right letters with enough force to make the keyboard work but not much that I dislocate the other fingers and half the time I hit the wrong letter or hit a letter and nothing happens. I really hate that--expending force to no effect other than my own discomfort. It makes me feel like I am out of phase with this dimension, going through the motions of a human body, but unable to have any proper impact on my physical surroundings. I should go take something so I can go back to sleep, but that would mean that I'd have to get up again and I'm not sure I have the will to face that again. Oh, and my muscles are spasming.

On the bright side, I'm in a good mood. I don't remember when the last time was that I slept through the night, but at least I've gotten four to six hours of sleep every night the past couple weeks. Beats the hell out of the previous two weeks, in which I was going 24 and 48 hour without sleep, and then maybe crashing for the usual four hours.

I've had a nice week all in all, even making gluten-free bread twice! And my kitchen is relatively clean despite it. I realize this is why I am aching so much. Standing to cook is exhausting, and my kitchen is not very me-friendly and can't be made to be so. So I over-extended myself this way (bwah ha ha. Sorry. EDS joke). And a friend is coming over tomorrow to help me clean house.

I'm currently reading Oliver Sack's Migraine. I'm taking an historical approach to it as an artifact of attitudes toward invisible disability. He wrote it back in the paleolithic era of 1968 and his revision was in 1992, so I have to keep in mind that he is representing the best in medical thought at the time. Otherwise, his depiction of migraine, as well as epilepsy, as partly psychogenetic would have me screaming in anger so loudly you wouldn't need me to blog to know how I feel about that attitude.

So. Will returning to my reading help me sleep? Or will it just get me riled up? Perhaps I should just fire up Joost and look for the most boring program they have available. There is one show that I know will always put me to sleep, but, alas, I don't know its name, and I am sure it isn't on Joost. It's about the Nazi fire bombing of London. While the subject is interesting, the presentation consists of a lot of flame images and sounds, with a soothing, even narration of the sort normally employed to quiet small children. If anyone knows what it is, and where I can get a DVD, I'd appreciate it. Sleep on demand will be mine at last!

Almost

I regularly read Octopus Pie, and for a brief moment, I thought that it might be going to slip in some disability awareness. But not this time, apparently.

When Hannah complains about being a cripple "doomed to society's mediocre scraps and reassuring backpats," and then Eve actually gives her a reassuring backpat, I expected the rest of the strip to follow through. But instead, Hannah storms off and Marek and Eve, respectively, excuse her anger on account of being disabled and deny her right to be angry.

Maybe in the next intallment? Not that there's any guessing. I read it in part because the storylines don't have a particular point to them, though they do have an arc.

Question from a reader

Louis Estrada posted in the replies to "Quadrapoligic" a question searching for help for an acquaintance. To improve the chance that someone who can give Luis an answer sees his question, I'm posting it here.

A young man of 20 years of age was shot several times in last year as is now a quadrapoligic and suffers daily of nerve and muscle pain on his legs. USC county hospital considers him a frequent flyer becuase of the many x's be calls 911 to pick him and deliver him to the emergency ward for sever leg pain. They say he comes in just for the pain meds because of his addiction to them. Regardless of the severity of his intake of pain drugs (hopefully he doesn't overdose), the hospital should provide some type of planned program and hospitalization for his pain; and addiction? I'm calling several doctor's and instituents on his behalf but many say they don't work with Medical.
Any free advise on doctors' who work with young ex-gangmembers now sadly disabled because of their previous lifestyles. Any information would be greatly appreciated. Tha[n]ks. Louis Estrada.

Meme pile-up

Via Kay at Gimp Parade: By the end of 2007, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.

Be sure to email me at worldzend at gmail.com with your snailmail address so I can actually send something. I'm going to wrap for posting this week, and then send randomly. This holiday season, you can have the gift of something completely out of the blue.

Support All the Troops

Jeffrey at TopatoCo has a great T-shirt for sale. The shirts have the slogan "Support All the Troops," with the wheelchair emblem stick figure wearing a military cap. A dollar from each shirt goes to Fisher House, which provides living space for family of injured troops.

Orders are only being taken until November 17, so don't dillydally!

Wondermark

I get the feeling David Malki! knows someone who uses a wheelchair.

OMG!

Blogger is finally working again for me!

Disability in Science Fiction

From the Valve, a question about the appearance of disability in Science Fiction, leads to a generous response in the comments. Looks like a lot of books and short stories have just made it on to my "to read" list.

How to put up an Easy-Up canopy

Part One

1. Go to garage
   
2. Search for large wheeled bag that you had left conveniently by the door last fall.
   
3. Find large wheeled bag on shelf in back.
   
4. Remember that the Helpful Relatives who put it there did so during a Very Necessary reorganization of Heavy Things that you weren't ever going to do.
   
5. Try to ignore that most of those heavy things belong to said Helpful Relatives.
   
6. Drag large wheeled bag out to the yard.
   
7. Marvel at how the conveniently wheeled bag insists on twisting over to its non-wheeled side.
   
8. Open bag.
   
9. Dump everything on your feet.
   
10. Rest for an hour.
    
11. Go back to the yard.
    
12. Stand metal framework up on its legs.
    
13. Try to remember how to expand it. Oh, yeah. Pull on the sides that say "open."
    
14. Remember that this part takes two people.
    
15. Go inside until you can recruit a helper.
    
16. Contact Friendly Neighbor who owes you several favors.
    
17. Meet Friendly Neighbor in yard.
    
18. Pull from different directions.
    
19. Watch Friendly Neighbor casually slip locking devices into place without any struggle at all.
    
20. Control envy.
    
21. Say thanks.
    
22. Go inside to get ready for bed.

Part Two

1. Go to garage.
   
2. Search for huge blue canopy that you weren't able to stuff into the wheeled bag last fall.
   
3. Find it on top shelf.
   
4. Remember to think nice thoughts about Helpful Relatives.
   
5. Bring large blue canopy to yard.
   
6. Unfold the canopy.
   
7. Drag the canopy over the framework.
   
8. Align velcro strips.
   
9. Feel satisfied that this part is going well.
   
10. Close velcro anchors.
    
11. Curse as one velcro anchor rips out of the fabric.
    
12. Fetch Spray Adhesive Guaranteed to Bond Anything Permanently.
    
13. Spray the Adhesive.
    
14. Hold for a few moments as you feel your fingers bonding together.
    
15. Watch the velcro anchor fall off immediately.
    
16. Rush into the house as you realize that what is being bonded together permanently are your plastic finger splints.
    
17. Grab the Acrylic Nails Remover that you mistakenly bought a few years back.
    
18. Liberally douse hand with Acrylic Nails Remover.
    
19. Take a moment to feel gratitude toward people with acrylic nails as your fingers now separate from each other.
    
20. Grab the duck tape.
    
21. Return outdoors.
    
22. Apply duck tape liberally mostly so you won't lose the velcro anchor.
    
23. Promise yourself that you will think of a permanent solution later.
    
24. Realize you need Friendly Neighbor again to extend the legs of the gazebo.
    
25. Return indoors to recover.
    
26. Catch frightful sight of yourself in mirror. Note to self: Remove mirrors.

Another happy update

After BEAT's campaign to get AirAsia to truly live up to its motto, "Now Everyone Can Fly," the airline has announced sweeping new plans for inclusion. I especially like the frank manner in which AirAsia has admitted that it was wrong: A banner hung at the venue of the public announcement has the international symbol for disability access and a reworked slogan, "Now Everyone Can Fly, including the Disabled Guests." Congratulations, BEAT, and way to go, AirAsia.

Happy Update on Pedro Guzman

You may remember Pedro Guzman, the Californian picked up on charges of criminal trespass and deported under the assumption that he is an illegal alien. Turned out that he is, in fact, a native-born citizen, and a man with a learning difficulty which, according to his family, makes it hard for him to provide correct answers to questions. Anyway, Guzman had simply been dumped across the border, unable to speak Spanish in any fluent way and completely unfamiliar with the culture and area. His one cryptic call to his family was that he didn't know where he was. The US government to this day denies that it did anything wrong in deporting a US citizen with mental difficulties.

OK, the update? His family found him and they're bringing him home. Guzman family, congratulations on your success in finding your lost son. May all families looking for their lost loved ones be as fortunate.

Mobility Impaired

The news from Malaysia is that AirAsia is pioneering new depths of discriminatory behavior. While using the slogan "Now Everyone Can Fly," Air Asia has a policy of refusing to sell seats to anyone who may require boarding assistance. Apparently, Air Asia uses old fashioned steps on the tarmac instead of jetways. I can see that, in less developed regions, jetways may not be feasible immediately. But not being able to get on a plane without help shouldn't mean not having to fly at all or, as AirAsia suggests, paying for and bringing along your own care provider.

AirAsia comsiders anyone who can't climb stairs to be "completely immobile." That is ridiculous. I can't get up and down stairs easily (Yeah, I can do it, if no one has anywhere to go the rest of the day) and I can't even traverse a jetway under my own power in the seconds set aside for boarding. But I am not completely immobile. I can even mow my own lawn, in small sections over several days. But apparently I couldn't fly AirAsia. Most people with disabilities are not "completely immobile," but AirAsia is doing its level best to redefine "needs a bit of help" to mean "cemented in place." Way to exemplify the social model of disability!

Fortunately, Malaysia's Barrier-Free Environment and Accessible Transport Group (BEAT) is fighting the discrimination, pointing out that AirAsia's rules keep pregnant women and senior citizens, as well as people with mobility impairments, from being able to fly AirAsia. Best of luck, BEAT!

Put your oar in

I took a look at Disapedia today. It's got that whole Web 2.0 thing happening which means, well, I'll let webmaster Peter explain:

What makes Disapedia special? Why should anyone spend their time visiting or, more importantly, contributing to a site when there hundreds if not thousands of sites ostensibly dedicated to the same cause. The answer is control. The community controls its destiny on the website not just in name, but in actual physical control. For so long the battle for the disability community has been over the ability to gain control of their lives. Why should their communities and forums be any different?

So, just as the advent of the internet allowed the disabled community to cover the world and find individuals who shared the same struggles and joys of being disabled, the next shift in the internet, Web 2.0, has the potential to have just as big of an impact on the disabled community. In an era of collaborative efforts and such project as Wikipedia, MySpace, or Diggit, we have a chance to create a place that reflects our own desires. Many sites have tried to do it in the past, but because they were started by just an individual or a small group of people, they failed, or the project was abandoned and eventually became out of date. With a community though, there are thousands to make sure that Disapedia will always remain up to date and the best resource for disability on the internet, no matter what the subject.

I can't say as there's a whole lot at the site right now. But there will be if you go put in your oar.

What will it take?

I came across two disturbing news items today. One is a of a diabetic man who was tossed off an Amtrak train in the middle of a forest by personnel who assumed he was drunk, when when he was actually suffering diabetic shock. The other is a report of a police officer who killed a suspect with cerebral palsy. At least the officer has been found guilty of negligent manslaughter and admits that he mistook the young man's jerky motion for threatening behavior.

If only this sort of story was an anomaly instead of one the constant fears of people with disability, that disability will be mistaken for disobedience and disorder. I don't expect everyone to know about every disability. But rather obviously, there are too many people who know essentially nothing about any disability and immediately interpret difference as danger. The result is that people get killed for spasticity, shot for being deaf, abandoned or jailed or tasered for diabetes and epilepsy, deported for developmental disability.

I don't for a moment think that anyone feels good or justified after making such terrible errors in judgment. So wouldn't it be a good idea to give some training to people who deal with the public? If there was at least some guarantee that an effort would be made to read medical alert bracelets, it would be a step in the right direction.

Hey, what happened to Eschara?

I really liked Eschara. People sent in pictures and stories about scars they had gathered in life, and the general sense was of pride in life well lived. Every few weeks, I went Eschara to check out the new additions.

And now? Um. I think it is in Thai. And I have no idea what it is about, but even the archives are gone. How does that happen? Anyone know?

Plus!

I am so easy when it comes to entertainment. A town half an hour away just got a brand-spanking new HEB Plus!, and I have so wanted to go to one for, oh, ever since they first started being built here and there. But more there than here, and I wasn't about to drive 2 hours just so I could go to what I was hearing was the most wonderful grocery store ever. But, dang, it's the most wonderful grocery store ever, and the closest I was getting was the TV commercials.

Until yesterday! Yay, I drove over there on the way back from work, me and MD, since we both work at the same place. First thing, there was lots of handicapped parking. Second thing, it seemed to all be full, except for one spot a bit up an incline. But that was the best we were going to get, so we took it.

We had already agreed that if there were no shopping scooters, we'd just go in the door and look to see how big the place was, but not actually try to do any shopping. However--get this!--despite there being so many gimps at the store that they had run out of gimp parking, there were still plenty of charged-up, ready-to-go, scooters! Plus!, indeed! So we each got a scooter, which was astounding, because usually we only get one and have to take turns.

And the aisles were wide!

And there were so many other people on scooters, it was like a convention.

And the people who weren't on scooters were all smiling and saying "Oh, excuse me, let me move out of the way." This even though they were coming across us scooty types on every aisle. Once, after I had put something in my cart that made it hard for me to see what sort of clearance I had, I clipped a display rack, sending manual can-openers tumbling to the floor. Three young men, none of them employees, rushed over and started picking them up, assuring me that they had it under control and not to worry.

I drove down the baking goods aisle, and came across something that made my eyes start to tear up: a whole section of GF cookies and baking mixes. With my favorite ginger snaps that must be torn into immediately just sitting there, waiting for me. I took them home and had my way with them.

OK, there was one guy in the entire store who seemed completely oblivious and constantly kept wandering over to where I had to be creative in order to miss him, but maybe he was trying to flirt? If so, he should have made eye contact, but as it was, he was just irritating. But not so irritating that my trip was spoiled.

Oh, then the scooters took us back up the incline to my car. And that was good, because you really can't get up hills very well by foot with only one properly working hip.

MD and I have decided to go back once a month. That's something, because she usually hates big stores and crowds.

Same old same old

Jeesh, I said to M.D. today, there are never any films about what it's really like to live with disability. For instance, there could be a film about someone applying for disability.

She doesn't miss a beat:

"They already made that film--Groundhog Day. Everyday, you wake up and have to fill out the same forms."

Congrats to the New Doctor

I am impressed with Kellie Lim, who was just graduated from medical school at UCLA. When I think of all the people who must have stood in her way, especially while she was getting her education, I am impressed with her ability to get things done. The biological sciences department at the institution where I work is notorious for declaring ahead of time that people with severe physical disabilities simply can't do the lab work. I'll be sure to pass Dr. Lim's story on to them.

PE--persistently evil?

BugsMom is wondering what sort of difficulty she will face getting Bug proper adaptive physical education. Good luck with that. I can only hope that things have changed for children with EDS over the past 15 years.

Before MD was diagnosed with HEDS, she was seeing a podiatrist who, not otherwise knowing what he was looking at, was at least able to say that under no circumstances was she to either run or jump until she had finished growing. (At that point, she was walking on the outsides of her feet, with her soles turned inwards.) Armed with this doctor's order, and soon by other doctors giving the same order, we were repeatedly assured that she would only be given activities that were safe for her to do.

That never happened. She constantly was told to do what the other kids were doing, which was always running and jumping. There were so many injuries, I begged that she be allowed to substitute some other activity for PE. Eventually, the school district conceded, and I paid for activity lessons privately, getting the teacher to sign off on the proper forms. I always thought it was foolish to require a child who had to spend an hour every day doing physical therapy to also have to do a "proper" activity, but that was as far as I could get a couple decades ago. It wasn't helped by the fact that, back then, even though I had access to the internet, there was virtually no information on EDS available on the web, and even less on IEP. MD's school district made it plain that no "special" services were going to be offered to her unless she transferred to the "special" school.

It didn't help that the best advice the doctors could come up with regarding HEDS was to avoid doing anything that put impact on the joints. It was hard to go to the school with such vague recommendations. It also didn't help that I was a single parent, trying to keep things together and still expected to somehow find time to jump through each and every one of the school district's infinite number of hoops. Or that genetics had caught up with me and I was also falling apart physically.

I hope that schools have changed, and also that the newly available information makes some difference. While the opportunity for education and socialization in the schools is wonderful, when MD and I look back on her childhood, neither one of us feels any nostalgia for the school bureaucracy and its drive to make sure all the pegs were round.

A must read

I found, via Grand Rounds, a post at Universal Health all about the problem of Villainizing the Vulnerable in medical care. I have to say, I had never before thought of the problem in terms of Milgram's Obedience to Authority, but it sure does explain a lot.

Don't draw the wrong lessons from Virginia Tech's misfortune

What happened Monday at Virginia Tech was deplorable. I have nothing but concern for the students of that institution, and for their friends and family. Well, there is something else. They have my respect.

From everything I have read, not only did the students and faculty behave bravely while under attack, students and faculty had been as proactive as they could. Professors made a point of referring him for counseling and students tried to reach out to him. Seemingly, everyone recognized that he was greatly disturbed.

And that is what the news is focusing on. Mentally-ill person on campus! The evil ADA won't let schools and workplaces throw out the crazies! Virginia had just passed a law that colleges can't expell students simply for having a mental illness or seeking counseling. You know it's true and important, because the New York Times says so. Quick, everyone, jump on the Lock Away the Nutters bandwagon while there's still room! After all, we just can't ever know which one of them will "snap."

I suggest that the NYT take a deep breath and consider the real problem. The real problem? How about that Cho had been picked up for stalking two women? That he had been tossed out of class for taking inappropriate videos of female classmates and intimidating them? Yes, Cho had committed crimes which were all the justification VT would have needed to expell him. So why didn't they? Apparently, no charges were filed, the girls involved being simply relieved to put distance between themselves and him. Did they get any encouragement from VT to file charges? I'm guessing the answer to that is "no." One campus counselor is quoted as saying "It is very difficult to predict when what someone perceives as stalking, is stalking." And the hospital that ultimately evaluated Cho as posing a danger to others also let him go.

In the light of recent blogosphere talk about Kathy Sierra and the Imus incident, I would hope more people are alert to the degree to which threats against women are blown off as irrelevant, with women being advised to simply grow a thicker skin. What if, instead of considering Cho's actions toward women as vague and not worth follow-up, VT had been encouraged and allowed by law to expell Cho and press charges for repeated intimidation?

OK, you're not convinced. You really don't care if a few, or even many, women are made to fear for their lives by a creepy guy who stalks them and takes unauthorized pictures up their skirts.

How about that he was an arsonist? What was wrong with VT's administration or, perhaps, its police department, that it didn't act immediately to have a fire bug removed?

The point is, we don't need to abandon recent efforts at inclusion and de-stigmatizing of people with mental illness. What we need is to take violent crime seriously, and understand that violent crime does indeed include intimidation, stalking, and arson. They aren't youthful errors. They aren't jokes. They aren't just little things that should be ignored. They are steps on a ladder of violent escalation.

I hope that all colleges will learn from this, not that mentally ill people are dangerous, but that crime is dangerous.

Choice, the Right to Life, and the Texas Futile Care Law

In the Gimp Parade, Blue tells us about Little Emilio and the Texas Futile Care Law. Ah, the politics of life in a state that provides only the federally-mandated minimum of resources!

The Texas futile care provision makes for some ironic situations, that's for sure. Here we are, in a state in which a pregnant woman told her fetus has a lethal condition would face tremendous odds trying to secure an abortion, if she wanted one, and yet the state has no problem with sanctioning death for the sake of cost-control. And the Catholic-run hospital is fully on-board with the futile care law. There could be no better illustration that current abortion politics are not about the right to life, but about who gets to make the decisions regarding life. Apparently, the state of Texas and the Catholic Church think that decision should rest with (usually male) doctors and government officials. One might think that institutions that truly support the right to life would be generous in making provision for the necessities of life for those who can't get them without help. But if one lived in Texas, one would know what a silly notion that is!

The Gimp Parade: Euthanasia in Oregon

Via The Gimp Parade: Euthanasia in Oregon, a cautionary tale regarding euthanasia and the intentional failure to provide medical care for the disabled. As Blue points out, what happened to Tracey could happen to any of us should we lose the ability to speak.

So-So Security

Morgan Dawn tells us about an article attacking Social Security Disability claimants. The article is a blatant "lucky duck" argument striving to refocus outrage from the greedy to the needy. Author Melanie Scarborough displays an astounding viciousness regarding the social consequences of disability. She apparently thinks that people with mental illness or autism are just milking the system, to judge from her assessment:

The guidelines say “social functioning’ includes the ability to get along with others, such as family members, friends, neighbors, grocery clerks, landlords or bus drivers.

“You may demonstrate impaired social functioning by, for example, a history of altercations, evictions, firings, fear of strangers, avoidance of interpersonal relationships or social isolation.”

Why should anyone collect a check from taxpayers just for being a jerk?

In determining mental disabilities, examiners also consider the applicant’s “concentration, persistence or pace.” So work slowly and give up easily, and you might be rewarded with a monthly check.

Scarborough also shows that she has no idea whatsoever how disability for the sake of SSDI is determined. She complains that the list of conditions for which one may receive disability is so "exhaustive that almost everyone has some condition by which they could claim to be disabled." I'll be glad to introduce her to the widow of a man who died from complications of EDS. During the final years of his life, unable to work or even to sit up on his own, he was repeatedly denied benefits until his lawyer managed to bring him in, on a gurney, before the judge who finally realized he was looking at a dying man. The first check came after his death. If that list is so darn exhaustive, how does it miss chronic joint dislocation and organ failure as symptoms that indicate a person can not work for a living?

Insisting that few people have disabilities, she then cloaks her distrust of people with disabilities with a false concern for those with "genuine disabilities" such as MS and Down's Syndrome. Everyone else, she believes, are "chiselers." And a much worse problem than CEOs draining the life blood out of corporations despite their incompetence on the job. Lets see, the people I know getting SSDI get in the neighborhood of $700 a month. That means that, in 10 years time, they have received about $84,000. That's penny ante stuff for any real cheats. Just ask former Home Depot CEO Robert Nardelli.

"Quadrapoligic"

Over at Gimp Parade, Kay shared with us a comment from last spring from AJ. AJ is not only piously concerned that Kay is bumming down his/her religious high, but has also added to the English language.

"Quadrapoligic"

Quadra--meaning 4

Pologic--meaning "of a study," like in anthropologic or sociologic

Thus, "quadrapoligic" must mean the study of 4 or perhaps study through the application of 4, and is a specific branch of numerology.

Thanks, AJ! My Word Power hasn't been so increased since I last came across an ancient Reader's Digest.

Happy happy, joy joy

I lost a thumb splint. For two days, my poor left thumb went unsplinted, though I did wrap my hand in co-ban in a sad attempt to keep my thumb from hyperextending. Not only does wrapping one's hand in co-ban not keep a thumb with delusions of freedom from trying to make a break for it, but it is awfully inconvenient when taking care of any sanitary matters.

But today, huzzah, I found it, a bit mangled but straighten-outable. And thus my thumb is once again held captive to the rest of my hand.

So, that's today's good news. It doesn't quite counterbalance the news that my house needs leveling, but between the house needing leveling and me having lost the thumb splint, the loss of the splint was of far more immediate consequence.

In other news, I'll be at the TACIL/SILC conference Monday. I don't plan to go to the Tuesday tour of the Texas Capital, because 1. I've seen it and 2. the thought of any extra walking is enough to make me happy to be sitting.

Our continuing story...

EDS activists are successfully getting their stories told in local papers. Here's an article that even brings up the ABC debacle!

so cool

Over at www.colourswheelchair.com, they have a clip of Aaron Fotheringham doing "hard sitting." If you ever wondered what the X-Games would look like if they included a wheelchair event, take a look at the clip.

Elasti-boy?!

Circus Performer is Real Life Elasti-boy

Yep, that's the headline that has accompanied the ABC press release as it has appeared in newspapers across America. And ABC is shocked, shocked, I tell you, that we're pissed? The attitude that people with EDS are some sort of freaks interferes with proper diagnosis and early, useful, intervention. This is the sort of attitude that creates situations like I wrote about in FLK.

All in your head?

Erica has an interesting graphic from the EDNF.

Mobilizing against misrepresentation

The American Pain Foundation is spearheading a campaign to let ABC know that its representation of EDS on Medical Mysteries was irresponsible and injurious. APF has set up an action alert to send letters to ABC about their treatment of EDS as a freak show. It's easy and you will feel much better letting ABC know their treatment of disability issues leaves a lot to be desired.

While you're there, you might want to join APF. It's free! And they are an effective lobbying group. Free and effective! What could be better?

And, as someone else has suggested:

Remind everyone that this is a great opportunity for us to be contacting television, print, and radio media right now. Write those letters to the editors of your local paper! Let them know that the nature of the show is indicative of a desperate need for public education and awareness.

It is also the ideal time to be contacting your state and federal legislators (especially those on health and education committees) as they may have seen or heard about the segment. Let them know that this poor coverage is further evidence that additional research and education requirements are needed.

Research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS. Assuming each of them has an average of 8 friends, family and caregivers, there are nearly 500,000 people who deal with EDS on a daily basis whether they realize it or not.

Keep in mind that we do have talking points that should be common in our correspondence. These talking points should be illustrated in our personal stories.

Tip #1: Keep the message simple, to the point and concise. It is a KISS=Keep It Simple & Short.

Tip#2: Know the talking points:

1. Ehlers-Danlos Syndrome is a genetic condition that can cause disfigurement, crippling disability and early death if not diagnosed early and its symptoms managed.

2. More research is needed to facilitate early diagnosis and to develop effective treatments that will prevent death, disability and disfigurement.

3. EDS research overlaps with other segments of the population; aging, arthritis, healing (diabetes), pain and cardiovascular health.

4. The diverse EDS community is full of compelling stories; athletes, dancers, musicians, children, doctors, nurses, singers, bankers, accountants, lawyers, parents, soldiers, pilots, grandparents, friends.....

5. Published research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS.

6. It is estimated that only 10% of EDS affected individuals receive a diagnosis prior to an emergency situation that results in disfigurement, a crippling disability or premature death.

Spread the word. And write those letters! If you know of another disability that has been misrepresented in a particular episode of Medical Mysteries, why not mention that, too? Mobilize against the side show!

Medical Mysteries

The EDS lists are abuzz over ABC's Primetime show "Medical Mysteries." And not happy abuzz, either.

And ABC is sure hearing about it! Bunches of angry people, not at all pleased at the implication that they or their children are freaks, have descended on the Primetime message board.

If you really want to know what EDS is about, check out EDS Today or CEDA or EDNF.

Amongst EDSers, the number one rule is: No party tricks. So, no. Don't ask us. We aren't turning our feet backwards or yanking on our skin for your amusement.

Victim of inclement weather

At the beginning of this week, we had unusually icy weather. So unusual has been this weather event that just about everything was closed down from Sunday through Wednesday. This includes my employer.

I appreciated not having to drive on iced-over roads, but staying at home has its own particular dangers. Since my house is both uninsulated and unheated (it also has a tiny bathroom that seems once used to be the pantry, so we're talking Old House), most of the past few days have been spent in one room, with one space heater and my electric blanket. And of course, I spent lots and lots and lots of time with my laptop, surfing to every link of any interest whatsoever. Since I live alone, there was very little to distract me from this dangerous activity.

Thus my ice-related injury is that I have generated a cycle of subluxing in my wrist. And this is on my dominant hand, so avoiding stress on it is not likely.

But that wasn't the end of it. Friday, I was back to teaching. After my classes were over, I got in the car. I started it up. I backed out. I put my foot on the brake. And dislocated my knee.

On the bright side, it was still cold enough that ambient air temperature all on its own kept the tissues from swelling. And, the other bright side, that particular knee has dislocated so often that at this point it reduces itself as soon as I take pressure off it.

On the not bright side, it's my right knee that will now need to be gingered for the next month or so, and my left wrist that is in a sublux cycle. So I guess I'll be using my cane like Dr. House. I hope that doesn't put my right shoulder out of commission.

Ashley X and designer disabilities

Wow, here's a case where the parents have actually designed some "disabilities"! The parents claim the "Ashley treatment" will enable their daughter to participate more adequately in their family life and society. What would the defenders of the Ashley treatment think of hypothetical Deaf parents who deafened a hearing child in order to remove the distraction of sound and make it easier for the child to fit into Deaf culture? I know of no such instance--the example is completely hypothetical--but I have a feeling that there would be no hospital board of ethics that would approve.

Then there is the other side of things. How do we know that Ashley doesn't approve of her treatment? There are people who remove perfectly good bits of themselves, like legs and penises, just because they feel uncomfortable having them. Are Ashley's parents right? Would she have been uncomfortable with breasts and a uterus to such an extent that she would have wanted them removed? Just because Ashley has a pre-existing disability doesn't mean that she might not want to design her body a different way. And what if a precocious, articulate Ashley had been able to somehow request it? Again, I have a feeling that no hospital board of ethics would approve. Heck, I know of people who have had dysfunctional uteruses who went from doctor to doctor for years before getting the bleeding, painful, prolapsed disaster taken out as they wished. Maybe they should have had their parents make the request.

(For some background on "designer disabilities," follow the link from this post.)
__________________________

I decided I should add a bit, just in case anyone is confused about my opinion. In the current social environment of the United States, the right of people with disabilities to control their own bodies and to make decisions regarding their children is met with horror and distaste. Yet, as we see with the Ashley treatment, the ability of able-bodied parents/caretakers to make radical medical decisions based on conjecture over future events rather than the actual needs of the person in their care is hailed as necessary and a kindness. This attitude trickles down to the littlest thing. I was at the hospital this week with my own grown daughter, who needed to return a monitor for a reading. When she fell due to a combination of seizure and EDS, nurses asked me what I wanted to do. Hell, don't ask me. Ask her. It was a short seizure. She was conscious. She's an adult. I don't own her.

Stephen Hawking....in spaaaace!

According to the Telegraph, Prof. Stephen Hawking is going to go where no gimp has gone before. That is, assuming Richard Branson gets his space tourism rocket up and running by 2009. But even before that, Hawking intends to fly the "vomit comet" this year. I guess that is a necessary step toward seeing if he can handle zero gravity. I am all excited! I hope it all goes well for him.

Oh, and today is Hawking's birthday! Happy 65th year, Prof. Hawking! Keep on rolling!

Subway Hero

I suppose everyone has heard the story of Wesley Autrey's heroic act by now. And I certainly have no intention of arguing that Autrey was anything other than heroic when he rescued Cameron Hollopeter from the oncoming train.

But...

If you ever come across a person having a seizure, you don't stick anything in their mouths. Never, never, never. This is something that my daughter lives in fear of, that some helpful soul will come across her while she is defenseless and stuff a spoon in her mouth. Stuffing a pen in the mouth is equally Not the Right Thing to Do. If you don't believe me, believe the Epilepsy Foundation.

So, what should you do? It's easy, and you don't need to be particularly heroic:

Move anything dangerous out of the way.

If the person is in a dangerous place, like the middle of the road or the edge of a subway station or face down in a puddle, move the person having the seizure out of the way of harm, just like you would for anyone else you find in a dangerous place.

Wait with the person to keep panicky sorts of helpers from stuffing things in their mouth or doing CPR or other inappropriate things.

Do not restrain the person having the seizure.

Seizures generally don't last more than five minutes or so, but afterwards, the person who had the seizure will likely be tired and maybe a bit fuzzy. Ask them if they would like a chair, a drink, a bite to eat. Ask if they would like you to stay with them for a bit. At this point, they will be able to tell you what they need. Believe them when they say they're OK.

Now, isn't that easy?

Thanks.

"Designer Disabilities"

ABC News is jumping on the dogpile against people with disabilities having children with their same disability.

Way to misrepresent an issue, ABC News. These potential parents aren't "giving" a child a disability, they are choosing to include embryos with certain genetic expression amongst those that are implanted, or they are choosing not to abort when they discover that their fetus carries the same traits they have. Dwarfs, especially, are encouraged to undergo genetic testing to make sure the fetus is viable. When they find out that a fetus is viable, but also has dwarfism, what do you expect them to do? Cry? Abort? Why can't they be happy about it, even happier than if they were told they would have an average sized baby?

Those people who are so incensed at the idea of "designer disabilities" that they immediately assume the worst and don't bother to read the entire article need to read the article, and read it carefully to see what is really going on, not what the editorializing says is going on. People should know better than to accept what the MSM says. Mainstream media plays to prejudice and fear, and delights in creating scapegoats. Don't fall for their lies.

This is so much the return of eugenics. First, the guardians of ethnic hygiene aim for the obvious targets: the Deaf, dwarfs, people with mental illness. Then they will go after populations with greater distributions of targeted genetic traits. Remember that Buck v. Bell has never been overturned, so it definitely can happen here. After all, it has here before.

Rudolph the Red-Nosed Reindeer

The newly remastered Rudolph is on. It's gorgeous, and it tells the story of the evils of socially constructed disablism. But, damned, it sure is disturbing.

First, Donner's initial reaction on seeing his son's physical difference is to demand that Rudolph wear a cosmetic prosthetic. When Santa (Santa!) sees the "deformity," he attacks Donner for siring defective offspring and warns that even a prosthetic doesn't cut it with him.

Months go by, and we see nerdy elf Herbie being ostracized for his atypical behavior. Is Herbie an Aspie? Whatever, he sure doesn't "fit in."

Meanwhile, the other reindeer boys discover that Rudolph has a unusual nose. At this, they heap abuse on Rudolph. And these bullies are egged on to do it by the adults. Once again Santa, who acknowledges Rudolph's physical prowess in jumping, again abuses Donner for having a son with a difference, and Rudolph is sent packing.

So far, the only ones who accept Rudolph for who he is are his mother and Clarisse, the girl he is smitten with. Not being vicious bigots appears to be the role of the females in Christmastown, for they certainly aren't welcome as workers or even as students.

Rudolph and Herbie find each other, and mutually decide to make a break for it.  Along the way to where they don't know, they run into Yukon Cornelius who, despite some odd behavior, is brimming over with acceptance and good advice.  The triumvirate travel together, in search of treasure, or, more exactly, in search of searching for treasure.  The Abominable Snowmonster notices Rudolph and begins following them.  This is unfortunate, because Rudolph has taken his society's devaluation of him to heart, and decides to save his friends by putting himself in danger.

So, what do we have so far? A North Pole society hallmarked by disablism and misogyny, with Satan Claus--I mean "Santa"--enforcing this rigid conformity while demanding a cheery demeanor and obeisance from his subjects.   Fortunately, this is a morality play in which the virtues demonstrated by the second class citizens end up saving the day.  A guilt-ridden Donner, Mrs. Donner and Clarice, and Rudolph's friends all set out independently to find Rudolph, who had managed to find his way home on his own just fine.  When they all end up in danger of being Abominable Chow, Rudolph's misfit friends show up in the nick of time to save them all.  And then Rudolph saves Christmas by functioning as a fog light, enabling the newly socially conscientious Santa to embark on a mission of social inclusion.  So, uh.  Yay?

What if turned out that Rudolph couldn't actually save the day?  What if he had just been different but not "special?"  Being different was enough reason for Herbie to be unwelcome, and his horrible difference was to want a professional career.  If Rudolph had been a lousy jumper, if he had had a snotty nose instead of a glowing one, would Santa have continued his exclusionary regime?  I know I am not the only who came away from the show as child with a profound distrust of Santa.

Oh well.  At least, Christmastown doesn't have a Jenny Craig.

I'll never dig out from under

Is there a rescue service for the hopelessly cluttered? Right now, every room in my house is a mess filled with things that I have no particular place for. Part of the problem is that I am in the midst of changing the designation of two rooms. The office is now a bedroom and the bedroom is turning into a studio and there is no office but there are still bookcases and files and a printer that have to go somewhere. A person who had that mysterious something something called stamina would finish such an undertaking in one weekend, but this is going to take me at least 2 more weekends to finish, what with needing to recruit man-in-a-can and fit everything into my busy whirlwind lifestyle. Then there's the problem that, even if everything was moved already, it isn't like I keep up with household chores. I go to work. I come home. I sit in the recliner and fall asleep. For financial reasons, it would be good if I had full-time employment. But I really have doubts that I could manage one for more than a few months before having a complete health breakdown. But then, if I had full-time employment, with all the benefits and income that would bring, maybe I could hire some help.

Born helpless, nude and unable to provide for himself

It's worth it to read Lore Sjöberg's columns at Wired, if only for his self-description at the foot of each article. Each bio is a play on the "overcoming handicap" trope. And usually the article preceding it is pretty damned funny, too.

Splints!

Got my Oval 8 finger splints today! I got a pack of size 8s and a pack of size 9s. The 8s fit my index and middle fingers pip joints great. The 9s fit my daughter's. How great! I think I will look into buying a smaller size for the dip joints, to correct the deviation which is returning. They're not so attractive as the silver ring splints, but I think they won't fall off so easily, nor do they seem likely to deform through daily use. So, yay!

Nazis in white coats

Today's Scotsman has a horrific article about doctors calling for "active euthanasia" of infants with severe disabilities.

SENIOR doctors are urging health professionals to consider permitting the euthanasia of seriously disabled newborn babies.

The proposal, by the Royal College of Obstetricians and Gynaecology, follows the increase in the number of such children surviving because of medical advances.

The college is arguing for "active euthanasia" to be considered for the overall good of parents, sparing them the emotional burden and financial hardship of bringing up the sickest babies.

I wish I could say that I am shocked, but such outrages have been on the horizon for a long time. Of course, the advocates of active euthanasia say it is for the benefit of families and the children they wish to kill (killing is what "active euthanasia" means). Oppressors always say that they are hurting you only for your own good. Segregationists in the United States argued that Jim Crow was beneficial to black people. White expansionists argued that the reservations were good for American Indians. Misogynists argue that their restriction of women's rights equates to putting womankind on a pedestal. What do all these oppressors have in common with euthanasists? They are lying. They only one being done any good is themselves.

A big part of life is how we respond to the weaker among us. This is something that anyone, religious or non-religious, left or right, should be able to agree on. A culture in which the weak are prey to the strong is a culture where no one is safe. The very weakest must always be protected, for their sakes and the sake of all members of society.

The people who advocate euthanasia are not interested in the well-being of those they seek to kill, or that of the families of the disabled. If they were, they could address those concerns by extending themselves more. They could volunteer to take over bedside duties once a week. They could more cheerfully contribute financially. They could make sure that the homebound are not shut away from society.

Some will say, oh but these are doctors! They have already sacrificed sooooo much for everyone else and, of course, they are selfless. Please. Anyone who thinks doctors are paragons of humanity doesn't have to interact with them much. They are just as liable to be vicious bastards as that idiot who cut you off in traffic. The fact is that, to be a doctor, one has to subject oneself to some pretty dehumanizing experiences. All the good will that the 18 year old pre-med had is little defense against the animal vivisection, the corpse dissection, the resident work hours that act to dull the brain, the repeated exposure to trauma. Doctors sacrifice a great part of themselves in their journey to become doctors, no doubt. And that is why they can't be trusted with these kinds of decisions. This is why they must be sworn to do no harm and take no life. The stereotype of the doctor with delusions of godhood exists for good reason.

And then there are the "medical ethicists." Medical ethicists are like economists. They think in terms of unreality. Given a model situation, where all actors are interchangable, what would happen? Well, there are no real model situations. Models are models, and reality is messy. Reality says that some are strong and some are weak, and that the strong will destroy the weak unless there are severe social taboos against such actions. It isn't like we don't have strong historical precedent to show us what will happen when the dealers in unreality take control. Soon reality becomes a horror show that none can escape, where the only virtue is that of survival, where there are no friends, no loved ones, no personal values that are worth endangering oneself for.

Speaking as an atheist and advocate of the scientific method, I strongly denounce the pseudoscience of social Darwinism. Evolution explains the development of separate species. It is not a plan for social engineering. Those who use it that way are just making excuses for the sort of behavior that made Sparta such a delightful spot in the ancient Mediterranean, that made Hitler's Germany such a comfort zone, that has made every royal palace in history such bastions of security. That is, they are simply justifying the destruction of the weak by the strong.

Lost another ring splint

I'm very sad. Yet another ring splint has slipped from my hand while I was preoccupied. Out of 8 splints, I only have 3 left. At least the thumb splints, which I need most, can't fall off easily.

I am going to order oval-8 splints. They aren't near as pretty as the silver ring splints, but perhaps they will not fall off on the occassions that my fingers are not swollen. And if they do, they are much cheaper: Oval 8s at Sammons Preston.

oooh, look!

Blogger is finally accepting posting through Opera again. I can only wonder how long this will last.

blogger beta bites

I have used Opera for, jeez, seems like it must be going on 10 years now. In the past few years, this upstart browser, Firefox, has come along. It's OK, but it ain't Opera. Opera is great. I don't have to find and download some fool extension to do what I want to do. I download the newest version of Opera, arrange the toolbar like I want it, and presto! I can resize, view without images, rewind something I viewed 32 links ago in one click, open up links in real tabs every single time without ever accidently opening up a new goddamn window--yes, Opera does everything I want, while Firefox only imitates everything I want.

That said, it isn't Firefox that pisses me off, just like Jesus doesn't piss me off. It's the fan club. It's the blasted determination that everyone will think and act and love and worship your own personal savior. And Google seems to have elected itself pope of the Firefox religion.

Though I started my blog using Opera, I can no longer access Blogger using Opera. I am right now using IE. I only use IE when I have to access badly designed sites. No, Blogger, I am not going to download and use Firefox. It acts enough like Opera that it just pisses me off when it doesn't perform as well. And I am not going to have 3 browsers loaded just because the fan clubs of 2 of them are run by evangelists.

So, I'll see if I can migrate this blog back to regular old fashioned Blogger, or publish it somewhere else all together. I know it isn't like anyone actually reads this blog, but on the off chance that some frustrated fellow Opera user stumbles across this, hey, I want them to know that they aren't alone. And that Blogger Beta does indeed bite.

FLK

When the doctor first suggested that M.D. had Ehlers Danlos Syndrome, the internet was still in its infancy. From the little I could gather, we needed to determine what type of EDS she had, and whether her vascular system was involved. And that she should be seen by a geneticist.

Now, I don't really know if the specialist we were sent to was actually a geneticist. His shingle read "endocrinologist," which I always thought was a whole 'nother specialty. But what did I know of the wacky ways of medicine? So, in the door we went. After not too long a time in a very unpleasant waiting room, we finally were ushered in to see the doctor.

He was not a particularly inspiring sight nor did he act as if he had any interest at all in M.D. The first thing out of his mouth was "Why are you here?" When I explained that we were looking for an opinion about what sort of EDS M.D. might have, or if she had it, he said "She's not an FLK" and left.

I was aghast. An FLK? Even then, I knew what that meant...a funny looking kid. The guy was into freak shows. I guess we were lucky, seeing as he was a jackass, that he didn't ask M.D. to do the standard EDS sideshow tricks.

But it was, for us, a completely useless medical trip. We were trying to get some advice about her pain, her mobility problems, what was safe and what was dangerous for her to do. Whether this might kill her. And all we got was an unwanted window into the bigotry of someone who styled himself a doctor.

Have a spinal chord injury? Need an insult?

Prashant Nair, author of Spinal Injury: So Many Ways to Strike a Chord at the Science Creative Quarterly is very concerned about your sad, pathetic "mere vegetable existence." I don't see how to comment at SCQ, but we can at least talk about him behind his back.

eBay

Eeeeee! I had my first successful bid on an eBay item just now. I wonder how long before I actually receive it.

fairy dusted

This particular story takes place at the ren fair this past weekend. Saturday had pleasant weather, but it turned out to be too hot for my daughter, who tends not to sweat and was in garb. She began displaying signs of confusion and irritation, but was determined to charge onward all the same. Which, unsurprising to me, led directly to a seizure.

Now, I am used to these events and know that, as long as she is still breathing, that there is nothing to do but wait it out. Most people simply passed by, not ever noticing the young woman prone in the dirt. A few came up, asking if they should call for assistance. This is the norm. My role in all this is to simply assure others that she isn't dead or about to die, and to make the entire situation look as unremarkable as possible.

After a good 15 minutes, she finally regained consciousness and began slowly scolding me, as usual, for not having done an adequate job of both being right there and leaving her alone. She's my child, so I expect this too.

While we engaged in our ritual of mother/daughter dynamics, and I was thinking that I no longer had to be on the lookout for people bothering her, a foot suddenly comes down on her diaphragm. Attached to that foot was a woman in a fairy costume. After a shocked split second, M.D. pushes the fairy off and chokes out: "I'm not part of the performance" while I holler "She's just coming out of a seizure. Get off her!" A different fairy inquires if she should go get help, but personal-space invader fairy just stands there gob-smacked.

We expect people to stare, to inquire, to want to try out their Red Cross skills. We expect them to just walk by quickly, pretending there is nothing out of the ordinary happening at all. But we never expected that anyone would decide that someone who has fallen to the ground makes a great prop.