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!