Saturday, December 23, 2006

"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.

Friday, December 08, 2006

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.

Thursday, November 16, 2006

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.

Wednesday, November 15, 2006

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.

Tuesday, November 14, 2006


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!

Sunday, November 05, 2006

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.

Saturday, November 04, 2006

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.

Friday, October 27, 2006

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.

Thursday, October 26, 2006


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.

Wednesday, October 25, 2006

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.

Sunday, October 22, 2006


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

Wednesday, October 18, 2006

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.