Friday, January 05, 2007

ENFORCED DISABILITY

"A member of my family is deaf, so I have been around deaf identity politics my whole life. This does not surprise me in the least."

One of the specters of genetic engineering that is often brought up is the idea that parents will deliberately manipulate their children so that they fit better the parents' ideal of perfection. The science fiction movie Gattaca was an attempt to deal with such a possibility and its consequences. This is a valid concern, since what is one person's perfect might be anything but. However, there's another side to the scientific concerns that is being practiced already:
If you have the right doctor and the right lab, you can have a baby with the right "designer disability."

That's right - you can create a baby with a birth defect.
Why on earth would someone do such a thing?
The procedure is an ethical minefield, but parents with disabilities like deafness or dwarfism say it just means making babies like themselves.

A recent Johns Hopkins survey of 137 American clinics that offer embryo screening found that four of them have done the procedure, which costs $15,000.

One of the nation's leading experts in reproductive medicine, Dr. Jamie Grifo of New York University, believes parents should be able to decide whether or not to have the procedure.

"Parents should certainly have a say in how they should be able to make decisions about how to conduct their reproductive lives, rather than leaving it up to some regulator or legislator," he said.
This activity has not been around long, but it already has a name:
The phrase "designer disability" was coined after two deaf lesbian psychotherapists used sperm from a deaf family friend to have two deaf children.

Cara Reynolds of Collingswood, N.J., considered having the procedure so she could have a dwarf baby.

In part, she felt she ought to be able to decide whether she could have a child that looks like her and her husband, Gibson, also a dwarf.

"You cannot tell me that I cannot have a child who's going to look like me. It's just unbelievably presumptuous, and they're playing God," she said.
It occurs to me, ma'am, that you are the ones attempting to play at God. There's an even more drastic step being taken by some, however:

Parents of a nine-year-old U.S. girl with the mental ability of a three-month-old baby are defending their reasons for using medical treatments to keep their daughter child-sized for the rest of her life.

The severely disabled Seattle girl, named Ashley, suffers from a type of brain damage doctors call static encephalopathy that will not improve.

She cannot walk, talk, keep her head up, and is fed through a tube.

Her parents call her "Pillow Angel" because she stays wherever they place her, usually on a pillow.

Ashley -- who doctors expect to have a normal lifespan -- has had a hysterectomy, surgery to block breast growth and undergone hormone treatment that will limit her growth.

This girl's parents are using medical treatments to keep the girl at the size and development that is equivalent to her mental age. Her parents put it this way:
"The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life,"
I'll be writing more on the idea of defining God or reality by our whims tomorrow, but at Ace of Spades, Ace had this to say about the story:
And -- they are artificially stunting her physical growth just to make it easier to move her?

Bizarre.
And commenters responded:
Her parents call her "Pillow Angel" because she stays wherever they place her, usually on a pillow.
I would say it's a good bet that those parents have some mental/emotional problems of their own.
-by Rosetta


Creeeepy. With four 'E's.

Clearly, there's something wrong when reverse eugenics is practiced. (Well, a different kind of wrong than normal eugenics.)

Words fail me. I think I need a war or something to distract me from things like this and reality TV.
-by Some Guy


I dunno about that pillow angel story. The "Ick Factor" seems to go against the procedure. Still, the fact that the kid will mentally never be more than a 3-month-old and that she's more likely to get lesions & bed sores as she gets larger (both serious problems for the bed-ridden) make the surgery understandable. This is one of those cases where, not having to deal with the horrible situation that the parents have been dealing with for almost a decade, we should withold judgement.
-by T-Web


Gallaudet university in Washington DC is exclusively for Deaf people. Oh I am sorry. It is an university for the people who are differently abled when it comes to perceiving soundwaves.

They appointed a new Principal a few years back, and then it came out that if he strained hard, he could hear a little. There was an uproar and a demand that he be removed.
-by Tushar D


This is where years of 'everyone is equal' shit gets us. You know what? Human beings normally can hear, it's not optional, it's not a freak of nature, it's standard equipment. When people are born with a birth defect (yes...deafness is a defect. No, it's not a culture) they can certainly lead productive lives but they are not by objective biological standards 'normal' and they sure as shit aren't a 'culture'.

Any doctor who is party to this should lose their license and be subject to a suit from these kids some day.

These people are not fit to be parents. They are putting their needs and desires ahead of their kids from day one.

On the upside, this is all somewhat moot in as much the Democrats are in charge of Congress now everyone can hear!
-by Drew


Tushar:

That's the point. It's one thing to want your kids to avoid hardship and suffering. It's entirely different when you intentionally handicap them for selfish and narcissistic reasons.

I admire people like Jim Abbot who overcome their disabilities, but that doesn't mean I think we should cut off everyone's arm so that they learn how to overcome adversity the same way.

And as for stripping your kid of his hearing just because you self-identify with the "culture of deafness" and want your kid to be a part of said culture: It's monstrous and cruel. There's no other way to put it.
-by Andrew


So lemme get this straight: it's _perfectly okay_ to kill someone like Terry Schiavo because she's taking too damn long to die, it's _perfectly okay_ to abort a kid for the crime of potentially interfering with your career, and it's _perfectly okay_ to deliberately make your kid disabled...
...but it's a sin and a shame to hang Saddam Hussein.

Liberalism really is a mental disorder. We should be looking for a cure or a vaccine. Something which can be sprayed from airplanes onto the crowd at President Hillary!s inauguation.
-by Trimegistus


And imagine the uproar if they discovered a gene for homosexuality and people were genetically altering it to make their kids straight. These same people defending the practice of deliberately disabling their kids would be outraged that someone was dabbling in this to control or alter their sexuality.
-by wiserbud
In a culture where it has been a generation since five lawyers in robes decided that the constitution required states to permit the murder of children, it is not surprising to find that attitude creeping to cover more and more of parental concerns over difficulty and inconvenience: "this child will grow up and be harder to care for, lets fix that with hormones and medical treatments so we'll have an easier life." Certainly it is framed in terms of the child having an easier life, and while I can see the wisdom in a hysterectomy, the other steps in the "Pillow angel" story above are deeply disturbing to me.

Human dignity and defining humanity has been lost in our society not due to any philosophical difficulties but because of pragmatic concerns. Humanity isn't defined in terms of abortion on any philosophical, ethical, or medical level, but simply by the convenience of the parents, particularly the mother. That's why a mother's privacy was the focal point, not the humanity of the baby for the Roe v Wade decision. At some point we have to decide the line where you go too far in using medical science on fellow human beings. If we haven't crossed that Rubicon already, we're waist deep in it.
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