damn the muse

"Lestat played with her as if she were a magnificent doll, and I played with her as if she were a magnificent doll... Yet more and more her doll-like face seemed to possess two totally aware adult eyes, and innocence seemed lost somewhere with neglected toys and the loss of a certain patience." [1]

In the book, Interview with the Vampire, Claudia was the child vampire who never grew up. Her makers and victims treated her like a child because of her tiny unchangeable body, but as the years passed her mind matured into that of a grown woman. She essentially became the woman trapped in the body of a beautiful little girl, and the consequences of her creation meant one thing. Even among vampires, her status as a child vampire was unnatural, unwelcome.

Though the vampire only exists in myths and literature, situations similar to Claudia's are becoming reality due to medical advances. Unfortunately, along with such advances, ethics come into play, and no matter how well meaning a procedure may be, ultimately there is bound to be a losing side.

The Pillow Angel

In October of last year the Journal of the American Medical Association (JAMA) published an article detailing the procedures done on a little girl known only as Ashley X. In January of this year, the child's parent's started a web blog detailing her medical history and procedures, which was called "The Ashley Treatment." The underlying purpose of the treatment being to make this child's life as comfortable as possible.

Diagnosed with static encephalopathy, it was clear to her parents and the physicians treating little Ashley that she would always have the mental state of a three month old child. However, unlike a child, her body would grow and mature into that of a woman as she aged. Ashley's parents felt they had to make a choice. They could stunt their child's growth, and remove from her body those organs that could bring her pain later in life; or, they could allow the aging process to proceed as usual and subject her to risks which might include rape and breast cancer.

As parents they felt they were making the best decision for Ashley. But when news broke about what they had allowed, what the physicians had done to a defenseless disabled child, the disability community was inconsolable.

Do No Harm

When do parents cross the line when it comes to their children? Some say spanking, others say worse. According to the disability community, a little girl was sexually mutilated and stunted. If she becomes more aware than she is, it will be too late for her to tell her parents that she wants to grow up and be a real woman.

If her three month old mind becomes more aware.

It's been stated that Ashley X will always act like a little, little girl.

When do parents cross the line, and when should physicians be accountable?

The ethics committee essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argue, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing." [2]

If a family has a documented history of cancer, chances are that the children will at some time inherit the illness, especially if it's genetic. Ashley's parent's made decisions to help her avoid the cancer dilemma. The also made some choices, that while endearing, makes one wonder if Ashley would have wanted this.

No one wants to see a child suffer, but sometimes a parent has to make a decision. Not one that's viewed as an assault on an entire community, but one from a parent to a child.

Taken from a slightly different perspective, are parents abusive when they decide to have rods implanted in their child's spine because of scoliosis. In this case a child may have a perfectly capable mind, but the pain of such a procedure, and the adjustment afterwards is just as unappealing even if the results are for the best.

Again, where is the line? Is it at conception with the emergence of designer babies, or before birth where parents are given some choice to dispose of a fetus if it's defective? Or perhaps it's afterwards, judged under community standards where a person decides what is in the best interest of the child even if we aren't the parents?

Once a baby is born, and the bills pile up, parents have to make the choices. Many abandon, others neglect, and some do the best that they can with what they have. The case of Ashley X is a difficult one because of what's been done to this little girl, this "Pillow Angel." She's been desexed and modified, changed into a little doll apparently to fulfill a parent's whim. This is one point of view. The other is that as parents they've improved Ashley's life, and can ensure that they'll be able to protect her for many years to come.

Parents have one of the most difficult jobs in the world, but one theme remains constant: it's for the children.

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I had a professor in college who was very fond of stating that everything in life was for the children. Clinton's policies were for the children, just forget about that little blue dress. When we discussed Dante's Inferno, some of the underlying themes would relate back to the children even if some of us in class would end up deeply perturbed. The poet's take on limbo: heathen or unbaptized, your still going to hell.

Still, one theme remained constant in my professor's thinking, and it's prevalent even now. What about the children? Who will protect them from the government, from their parents if they're born with a disability? Should they be protected?

Euthanasia and the case of Emilio Gonzales

For the past few years disability advocates have been weighing in heavily against measures favoring euthanasia. Because many in the disabled community do not have control of their own care, there's an undeniable fear that a family member, case worker, or physician will decide that a disability is so severe that an affected person wouldn't want to live. It's a matter of who has and who doesn't have the control, and when the disabled person doesn't have a natural right to control his/her life, it's downright frightening. Someone else decides who lives or dies. However, every story has an angle, and not everyone in the disability community views euthanasia as the most horrible way to approach death.

Euthanasia for many in the community is the answer. There are disabilities that are so debilitating and terrifying that many would like to die before having to deal with the symptoms. There are no cures for cystic fibrosis, or Lou Gehrig's disease. Though there have been medical breakthroughs, and medications to extend life, reality doesn't go away. Pain doesn't disappear, and it's horrible. Though many may question these types of decisions, euthanasia is what some people choose, unless of course a the third party is involved. When it's a lover, or a sibling, or a child, sometimes the person considering euthanasia can't be dissuaded and won't care. When the third party is a physician or the government everything becomes complicated, or in the case of the United States it's outlawed unless there are special circumstances.

Terri and Emilio

Currently, Texas is dealing with the case of Emilio Gonzales and whether he has the right to live or die. At 16 months doctors think he has Leigh's Disease. In layman's terms it's a disorder that affects the nervous system with symptoms ranging from loss of motor skills to seizures. Most children diagnosed with Leigh's don't live past the age of 6 or 7. Emilio was born blind and deaf, so being diagnosed (unconfirmed) with a terminal disease convinced the physican caring for the baby to take the next step. Extensive medical care stopped and a committee formed under the Texas Advance Directives Act (TADA).

Signed by then Governor Bush, the act temporarily protects a patient's right not to be taken off life support. A medical ethics committee convenes to look over the patient's records, and the patient's guardian is invited to attend. Furthermore, the guardian is given ten days to find a facility that would take over the patient's care. At no time does the hospital or physician stop care until the transfer occurs or the ten days expire.

The act was construed as a way to prevent any situations that might turn into another Terri Schiavo incident. It would help shield doctors and hospitals from liability, and please the Right to Lifers. Yes, when TADA became a law it had the full support of the right to life groups. Maybe because no one wanted to deal with another potential coma patient who "might wake up." But the Futile Care Law, as the TADA is now called, is being used in cases with consequences. Emilio Gonzales could be the next victim under this act.

Or not.

When read in context the act ensures that the patient's best interests are considered, even if it means death. All parties are involved. Emilio's suffering ends, and he won't have to deal with the growing list of symptoms.

On the other hand is the doctor being stingy, negative even by saying that there's no hope? The mother wants more time with her baby. There might even be a cure, even if it's slightly unrealistic. She's the one who is supposed to make the right choices for her child, isn't she?

Who decides for the children?

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I really, really need my guardians right now. And to think, the day had started out so lovely.

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A student was denied extra time on the LSAT because the court found that his condition, ADHD, did not substantially impair his ability to take the test in the time allotted. The court relied on the student's performance in school and previous exams to make the determination, which makes sense, but what I find intriguing is the attempt to a disability.

"The fact that plaintiff is clinically diagnosed as having a learning impairment does not automatically mean that he is entitled to an accommodation under the ADA. An impairment and a disability are two different things," Surrick wrote.

Is an impairment meant to be temporary? ADHD is not temporary. And how is this different from a disability? The inability to perform is a disability even if it's mild-- in loose terms. (Must get my hands on the opinion). Impairment is a subheading. There's never a guarantee the person will get better.

Regardless, the decision is a bit ironic when I think of the students in my law school who used ADD as an excuse to get extra time for finals. A few extra minutes was not going to make the issues appear if you didn't know them.

As for the the LSAT, it's useless.

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Fashion Week in NYC had a surprise this week, and it included wheels. Last week one of the fashion shows was dedicated to raising money for spinal cord injuries, and four of the models gracing the runways were in wheelchairs. The wheelchairs were designed by four separate designers, and the event managed to raise over one million dollars.

Here's to being fashionable.

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Researchers in Spain are trying to construct wheelchairs that run just with the power of the mind. Granted, I bet they still need batteries to give them juice, but imagine not having to use one of those joysticks to turn right or left. Is this the future?

Spanish scientists have begun work on a new brain-computer interface, or BCI, capable of converting thought into commands that a wheelchair can execute.

Other researchers have already had some success with hard-wired brain computer interfaces, but they're powered by large computers and are physically plugged into the brain.

The Spanish researchers hope to develop a small, mobile interface that works with electroencephalogram electrodes, or EEG, placed on the scalp.

Noninvasive and small. I wonder what they'll come up with next.

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A challenge has been issued, and it's taken me an entire day to write about it. It is that difficult.

Over at Feministe, a mission was set. Women were asked to list five things they loved about their body and their self. Just five simple things, and I'm sure that any female would have some trouble listing one or two things or maybe even all five, but among the disABLED community it's a bit more complicated. It's all about appearance, what is lacking or not. When a person sees you for the first time that first glance speaks volumes even if it's unintentional. Unfortunately, in our society the physical is everything, for the most part.

So to say that the last twenty-nine years have been a journey in self-acceptance would be the understatement of the new millennium! Coming up with a list of five lovely things to say about my body was downright excruciating. Not because I don't believe I'm gorgeous, but because I'm afraid of sounding vain.

1. My hair. I absolutely am anal about it. I cut it every three month, condition it when it's supposed to, don't fry it, don't over dye it, etc. It's my hair.

2. I love my eyes. They are green, but they turn into shades of greyish green or green blue depending on what I wear. Who needs contacts with these eyes.

3. My voice. It's loud, it's soft, and it sings.

4. My hands. They're the second thing people notice about me that actually labels me as what I should be and am not. I'm ambidextrous in a nontraditional way. I type with my left and write with my right, and I have the neatest, tiniest handwriting ever. These hands take me everywhere.

5. My butt. Big is in. 'Nuff said.

Ladies, your turn.

Courtesy of Wheelchair Dancer.

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I feel human again, and that feels great. I just had to lie on the couch all day and watch mindless tv with the lights off. A few brain cells were lost. Oy. And as I'm typing this it may not be clear, but I've deleted quite a few spelling errors. Foghead strikes again.

Migraines are evil.

I thought I had one last summer, but I'm thinking that was just a fluke. This one wasn't, and I didn't catch it on time. Why? I've become complacent perhaps? Lack of pain for close to a year = stupidity. The signs were there. I was just in lala land or something.

I'm too hard on myself.

I hate migraines.

I despise foghead more. I sound stupid.

By the way, the forecasters in San Antonio are going nuts. This cold front is sweeping in and we're supposed to get ice tomorrow and snow the next two days. Snow. White stuff. Methinks people will actually keel over and die. This doesn't include the people who die from the accidents that will occur from the crazy drivers. They'll see the stuff, freak out, and kaboom.

It's frozen water people. Drive slowly. Unless you are me who likes to do spur of the moment things like go down steep hills laced with sheets of ice, and oops am I skidding? Been there. Done that. Very stupid. Fun. But stupid. And I was in my scooter, not in a car. I could have tipped over!

My lesson is very cold weather is pretty, but cold and dangerous. And if it does snow in San Antonio, I'm so going to have to take pictures even though I've seen enough of that white stuff to last a life time!

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A few years ago I saw a movie called Gattaca. It was haunting and prolific. It posed one simple question; what would society be like if parents could genetically modify their children? This wasn't just about changing a child's gender. The modifications were so intrusive that the new child would be free from disease. Except this in turn lead to a society where the "modified" were superior to the "unmodified," and a new class emerged.

It was a great movie that makes you think. Science has opened the door to many things, and fortunately it is eradicating some diseases. But should it be used to give them?

Three percent, or four clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability.

Some doctors have denounced the practice; others question whether it’s true. Blogs are abuzz with the news, with armchair critics saying the phenomenon, if real, is taking the concept of designer babies way too far.

“Old fear: designer babies. New fear: deformer babies,” the online magazine Slate wrote, calling it “the deliberate crippling of children.”

But the survey also has led to a debate about the definition of “normal” and inspires a glimpse into deaf and dwarf cultures where many people do not consider themselves disabled.

If families want to have disabled children, then I'm sure that there are plenty of orphanages and adoption agencies who would be willing to help. But why oh why would you want to cause a child such grief. You can't shelter them from the teasing, from the discrimination. And as much as they come to accept that they're normal, it will never stop the stares. Can you prepare them for that? It's downright selfish and cruel.

Genetics shouldn't be messed with, period.

Edit: The link has been fixed.

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It's dying! My sony laptop is fading into hardware hell (once I'm done with it)! I can get an hour of runtime before it shuts down, and then the waiting game begins. Fortunately, Goodwill opened up an internet cafe for the disABLED. It supposedly has all these nifty gadgets that make surfing the web ten times easier. Frankly, I think the whole purpose behind the cafe is great and about time.

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There's a Wii Revolution going on, and so far I'm not apart of it. I feel left out. Normally, this wouldn't bother me as much, but the Wii looks brilliant, and for once, I think I might actually be able to play the games thanks to the innovative remotes.

See, for the longest time I've had to sit on the side-lines. As new consoles came out, so did the new controllers, and well they were huge. It's hard to wrap your fingers across those suckers, and then most games require that you hit the A and B button simultaneously, but don't forget about the Z button which is on the bottom. Oh, and the Y and X buttons are on the sides, and they're important. If I wanted to play "Smash Brothers" I had to master all of them, and well with my hands, coordination was never my strong point.

Back then with the Super Nintendo everything was much easier. Oh, and I kicked much booty. As Chun Li I was unstoppable, and I perfected the time in which I beat "Final Fantasy 2." The games were still cool for such simple controllers. They were accessible. And as I'm writing this I'm fondly remembering Metroid and Zelda whose theme music just assaulted my brain.

I miss playing games. They're not easy to play anymore, and it isn't because they're complicated. The controllers are just so huge, so they're not manageable. So when a person like me sees the Wii, I drool. For all I know it could still be difficult, but it does look like a lot of fun.

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Capital One loves to advertise that it's the best credit card company ever. It would never send its customers to Antarctica, or push around small business owners. It will, however, do its best to make sure that no one cancels its services. Discriminating against the deaf, that just doesn't surprise me.

Via Digg.

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The voting site used to be across the street from my apartment. When I logged in this morning to check that it was still going to take place there I was shocked. SHOCKED. The bastards changed it. It's two bus rides away, and only a five minute drive by car.

The bus system in San Antonio really sucks. They just rearranged the schedules this week to improve performance. What I find so fascinating about the whole ordeal is that the people running the schedule changes don't even ride the buses. I really wonder what's in store for January. And because I'm really lazy, and I don't feel like sitting around and waiting for a bus, I'm just going to "walk" to the location. Here's hoping the battery on my scooter doesn't die.

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I have yet to see the documentary, "Murderball," but apparently it's done wonders for the sport called quad rugby. It's catching on, and now more men and women want to participate. I guess it comes with the thrill of crashing their wheelchairs into each other! What is even funnier is reading that the women are meaner than the men. Nah, really?

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The UN has just agreed on the text for the treaty that would protect the rights of people with disABILITIES. Final passage of the treaty is expected to occur next month, and all the countries who agree will sign. The US won't because the ADA already provides sufficient protections.

Then why is it that after 16 years there are business that still do not provide accessible entrances?
Public transportation with no ramps?
No sidewalks, or sidewalks with lightpoles sticking right through the middle?

It's slightly frustrating to be standing outside in a rainstorm, hair dripping, clothes soaked, can't open a door obviously because the push button isn't there, isn't working, or was placed too high and people just aren't around to lend a hand. Wet.

This is my USA under the ADA with all the protections it affords. Do I feel oppressed? Nah. I'm too stubborn, and I'm glad that this treaty has finally been realized. Now others will get a chance. Maybe, they won't have to feel trapped.

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I have always wanted to go to a gym. The only thing that has stopped me, besides the fantasy of having a gorgeous trainer carry me around, was the plain and obvious fact that the equipment and I do not mix. Now we might! It looks like it might be friendly to those with working upper torsos, but seriously the gym machines pictured look like tons of fun.

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What's the latest wheelchair accessibility? The niftiest car I have ever seen. Grey or black, bitte. Why is it that the Europeans tend to be more innovative than the Americans? England and Spain at times are more disABLED friendly (though not the underground!! MY GOD scariest experience ever). I want to live in Spain one day...

Anyway, if they start importing those cars, it would be cool if they could adapt them for scooters. Not everyone is a four wheeler. Three wheelers will inherit the Earth eventually...

Via Cnet.

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I picked up dinner at Wendy's today and decided that I had to use the drive-thru because waiting for someone to hold the door open for me would take years. The look on the guy's face when I went to pick up my food was absolutely priceless. Score one for the scooter babes!

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Listening to: Los Fabulosos Cadilacs - El Matador

I finally realized what it was about that new show Miracle Workers that made me grimace everytime a preview came on the set. It wasn't the music, though to be honest that much mushiness made me wonder if ABC was trying to make even the most bitter of people sniffle with such contrived melodies. No, it was the actual stories and the way they seemed to be portrayed.

I haven't seen the show. I'm probably being extremely unfair. The people chosen to be fixed probably deserved it. My question is did the show take the time to explore their hardships in society? Or were they just portrayed as freaks? Did they highlight what these people could do? It's not a death sentence, but shows like these love to portray a disABILITY as such a life-ending situation that society feeds into this ignorance. Why not report on how limited we are by business who still refuse to follow ADA guidelines? Or a government who keeps cutting back on benefits sorely needed?

It's so easy to say, "Voila! You're fixed," on television. I don't need to be fixed. I want an equal chance to enter a building as an able-bodied person without the pity stares or the misconceptions that I'm missing out.

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The Japanese care so much about their peeps! And no there's not a theme here (below).

Always innovators when it comes to technology, our friends on the other side of the world have created a robot that can carry the elderly. It can hear, smell, and see. Can it replace a man?

That was a joke.

Ever so worried about the growing population that can no longer take care of itself, this robot is aimed at performing tasks that a personal assistant would normally do... like lifting! Eventually they hope to program it to detect health problems.

Via Boing Boing.

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