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Sunday, Nov 8, 2009
I can't believe that ANY of the posters here object to the surgery and the decision of the ethics committee. We should applaud these parents for taking care of this profoundly disabled child in their home. (Rather than institutionalizing her, or killing her, as I'd guess many parents in history have done in similar cases.)
So they creepily call her "Pillow Angel." So what? How hard must it be to take of this girl, day in, day out, knowing that she will age and never improve, that she will need your care and attention constantly for the rest of your life, and that probably you will die before her, not being able to make sure she will be taken care of properly and lovingly after your death? If under that psychic stress the only quirk you develop is calling your daughter Pillow Angel, you're lucky.
Doctors & other posters who are talking about her personhood, independence, right to sexual pleasure, etc., are the skewed ones. Ashley's brain is at the developmental level of a 3-month-old's! She can't sit up! COME ON.
Disabled people are not one homogenous group, to be treated identically. And amen to the others who have bashed the "slippery slope" argument--that's exactly why we have ethics committees. This treatment would never be approved for a girl with, say, Down's syndrome. Worrying about the slippery slope, and thus denying this surgery, would only make this individual family's already unbelievably difficult life even more so.
Give this family a break. If you really care, why not volunteer to babysit Ashley for a week so her parents can actually have a break?
"Any parent asserting that they know the complete reproductive and romantic future of their child is disturbing."
I think anyone who writes that, along with the doctor talking about "sexual pleasure", is mentally disabled, and perhaps secually perverted. "romantic future"?? She is (mentally) 3 MONTHS OLD! Can't you get that through your heads?
"Ashley" doesn't have a reproductive and romantic future with a brain that stopped growing when she was three months old.
She can't sit up, walk, talk, and needs to wear diapers and be carried everywhere.
Until we invent a medical treatment that enables babies who have her disorder to develop normally we will have these moral dilemmas.
However, many posters seem to forget that her mind will never mature. Mentally, she will always be at the level of a newborn baby.
other than concern about setting a bad precedent, is that people don't understand, or don't really believe, that she IS mentally only 3 months old.
The young parents of a severely developmentally disabled daughter have decided to freeze her growth at age nine. In conjunction with doctors at Children’s Hospital and Regional Medical Center in Seattle and with the approval of that hospital’s ethics board, young Ashley’s parents determined that her uterus should be removed, her breast buds excised, and large doses of hormones be administered. As a result, Ashley will remain a perpetual child. She will never experience puberty, never grow beyond her dimunitive height of four and a half feet, and never grow up, no sir. Unlike Rip Van Winkle, who was lost in time, she is Peter Pan, forever frozen in it.
No one can deny that Ashley faces a difficult life - she is bedridden, a result of static encephalopathy of unknown etiology. I work with a child in the same state as Ashley, bed and wheelchair bound, who is eleven. His parents are struggling with his needs and the simple fact that his increasing size makes adequate care difficult. What seems tragic and depressing to an outsider like me must be infinitely more tiring, frustrating, and emotionally draining for the family. I can sympathize with the feelings that led Ashley’s parents to make their decision.
I believe that Ashley’s parents made this decision out of profound love for their child. I also believe that it was incredibly wrong.
I am employed by California’s Regional Center system, a series of 21 non-profits, distributed by population, that provides services to the developmentally disabled. We were created by a landmark piece of civil rights legislation, The Lanterman Act (so named for its principal proponent, Republican State Assemblyman Frank Lanterman). It affirms that the disabled have fundamental civil rights that may not be taken from them, and put into place state funds, administered through the regional centers, to assist children and adults with developmental disabilities. Crucial to our work is a commitment to our consumers’ rights.
As much as Ashley’s parents love her, their needs could not be properly divorced from such a decision if left in their hands. No one seems to have spoken up simply for Ashley during this whole process. Her rights were unconscionably violated, no matter the good intentions behind that decision.
Ashley’s parents defend their decision since it will allow them to provide a better quality of life for Ashley for longer than they would have had she developed naturally. She will, they and her doctors contend, avoid many of the discomforts and health risks associated with disabled children and adults as their bodies change. This is undoubtedly true. Caring for a disabled child, especially one like Ashley, is an incredible emotional and financial commitment, and society as a whole has not embraced the idea of communities drawing together to aid parents caring for children and adults who require a level of attention most people can barely fathom. In 1969, the government of California made the decision to devote considerable resources to their care.
And it is expensive, have no illusions on that score. My regional center alone is currently funded to the tune of $160 million dollars per year. We serve 12,000 individuals and between federally-mandated Early Start services (for which the federal government reimburses the states) and our own mandate, we take in 40 new consumers per week, half of whom will be eligible for our ongoing services until they pass away or decide they no longer want us.
Between the regional center and Medi-Cal funded services, the state of California spends a lot of money trying to help people with Ashley, but it’s never enough. There aren’t enough people willing to go into nursing or any of the other fields our services require. But every bit does help, sometimes considerably, and we can do more in any state. All it takes is a bit of will.
I am normally loathe to engage in “slippery slope” arguments in matters of ethics. They tend to become sloppy and awkward, if not outright histrionic. However, in matters of unequal power, I am willing to suspend my reticence. Make no mistake: There was an imbalance of power in this decision. Ashley had no power or ability to contradict the conclusions of her parents and physicians. My concern is not that people will start taking their children with autism and stunting their development in order to keep their behaviors in check. My concern is that someone without a voice was allowed to undergo an irrevocable procedure to solve a problem with no perfect answer, but many other solutions.
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