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Sunday, Nov 8, 2009
What I find ironic is how Children's treated two different cases where parents requested "novel" treatments so very differently this past year.
In August 2006, Tina Carlsen was reported to CPS for refusing to go along with a Children's doctor's recommendation that her 10 month old son receive dialysis. She had told the doctor that she wanted time to get a second opinion and seek out alternative therapies instead of dialysis, which had not worked well for other members of her family. Even doctors agreed afterward that the infant's liver condition didn't present imminent danger.
The disagreement culminated in the mom's arrest for "kidnapping" her 10 month old son from Children's, where CPS and the doctor had scheduled surgery against her wishes. Ultimately, the hospital performed surgery on the baby while he was in state custody, and it has taken a tremendous financial and emotional toll on the family. (The incident was covered by Seattle Times and Seattle PI).
In light of that, Cowan's comment from the article about the power of parents to make medical decisions for their children seems really hypocritical. The fact that Ashley's parents were "articulate" and "assertive" -- i.e. that they had money and knew how to navigate the system their benefit -- is a big part of this story.
"Ashley cannot speak for herself, so someone must speak for her," Cowan explained. "Who is best suited to speak for this child? Is it those people who live with her day-to-day or is it some arbitrary outside body? You can't be sure that [the treatment] is a good thing to do. It has its merits. In the face of these, what I think you can say is that if the parents appear to be acting as loving advocates for their child and will deal with the consequences, it's OK to accede to their wishes. To say to this family, 'You are wrong, you can't have this procedure because we know what's better for you and your child for the rest of your life,' is an impossible thing for us to say."
"Now, she need never experience sexual assault, pregnancy, menstrual cramps, and has no need of invasive, frightening screening tests."
Well, three out of four ain't bad, I guess.
Tricia
I'm disappointed but not surprised that the majority of responses to the Salon article support the parents' response to their daughter's condition. Here's a link to a position statement by a disability rights organization--yes, I work there. I hope you can take the time to read and consider this position and the others posted at our website:
http://www.dredf.org/news/ashley.shtml
"We deeply empathize with parents who face difficult issues raising children with significant physical and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct.
This is from the link you posted. You seem to feel that Ashley was cheated by the system of her opportunity for independence. This shows either a tragic level of ignorance about the case or a desire to distort the case for your own means. This child was cheated out of her autonomy by a cruel twist of nature, not by doctors or her family. She CANNOT ever make a decision for herself. If there are future implications for this case, then they apply only to those very rare cases where an undeveloped brain is encased in a normal body. There is no "system" that will fix her. The best her family can do is to give her whatever pleasure she can experience from life by taking her places and not leaving her in a bed all day, and to protect her from whatever pain they can. This girl has a malformation that keeps her from ever growing into a full, thinking, person. Using her as a poster child for "autonomy" is an insult to the majority of the disabled community members who are able and willing to make decisions for themselves.
Let her live her life with whatever comfort and joy her parents can bring her, and go back and fight for the rights of people who actually have the intellect to care. This girl is not a poster-child for disability. She not merely disabled. She's in a category too rare to even have a name.
Preventing her from growing breasts does not innoculate the child against sexual assault. Most sexual assaults have little to do with liking the look of someone's boobs and a lot more to do with power and humiliation. And quite a number of sexual assaults happen to people who do not have breasts (i.e., children).
It is nature that denied the child her autonomy, not her parents nor her doctors.
The doctors thought very clearly about not what we, as a society, wished for Ashley, and in her limited way she wants to be with her family.
And, about that whole menstration thing. It is not wise to bring ideology into the care of one person. Imagine what it would be like for her, large and bed ridden, to endure menstration. It is important to think clearly, nor jingoistically. And, yes, if I am ever in such a situation, I hope that my doctors think as clealy and compassionately. And bravely.
When I first heard this story, I, too, was a bit horrified. Then I followed a link to their website and came to the conclusion that they love their daughter and are trying their best under awful circumstances. So they call her their "Pillow Angel." Would you have selected the same pet name? Probably not, but so what? You may call your children names that I wouldn't call mine. Lucky for you such details about your family's life haven't been exposed to the world for ridicule.
I'm entirely with TruCarMa, here. I'm boggled by the presumptuousness of people who have decided that the choice of "Pillow Angel" as a nickname means that her parents view her as less than human. If anyone on earth is keenly aware of Ashley's humanity, it's her parents. To quibble about the endearment they choose for her is petty in the extreme.
Much of the initial coverage about Fort Hood turned out to be wrong. Is there anything wrong with that?
The accountability imposed by another country for the CIA's kidnapping and torture reveals much about our own.
Fox News' morning show plays to type, talking about whether Muslims in the Army should face "special debriefings"
The survivor and author is upset about comparisons some on the right are making to genocide
Once seen as a lunatic fringe, reactionary anti-women groups are courting respectability
Salon headlines in your mailbox
