“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, May 09, 2007

Pillow angel surgery broke the law

So it turns out that the procedure to keep Ashley as a child was illegal, because she was sterilized without court approval. CNN.com reports,

The Washington Protection and Advocacy System, a private group vested with
federal investigative authority for people with disabilities, found that Seattle
Children's Hospital and Regional Medical Center violated the constitutional and
common law rights of a girl identified only as Ashley by performing a
hysterectomy without a court order from the state.
"Washington law specifically prohibits the sterilization of minors with developmental
disabilities without zealous advocacy on their behalf and court approval," said
Mark Stroh, WPAS executive director, in a statement.

The article at CNN.com gives the impression that although they regret not following the law, they in no way regret the procedure. In a later quote from the article,
It was like seeing a baby in a much larger body," said Dr. Douglas Diekema,
director of education at Treuman Katz Center for Pediatric Bioethics in Seattle
and chairman of the bioethics committee of the American Academy of Pediatrics,
who was brought in to consult on this case.
"She would never talk, never walk, and was dependent on her parents to meet all her needs. Her cognitive function was the equivalent of that of an infant, unlikely to ever change." Family members call her their "pillow angel."

So the chairman of the bioethics committee of the American Academy of Pediatrics comes down on the side of the surgery. How many times have you heard stories about doctors telling someone they will never walk, or never run, or never talk or never do whatever the doctor thinks they won't do. If nothing else, this should tell you that


Understand me that I have dear friends and family members who are medical professionals. They are incredible people who do wonderful things. But as a group, doctors just don't get it about disability. To Dr. Diekema, the sterilization of the little girl was not a problem of ethics it was a problem of legality. Its like, you didn't get a permit before you built the addition on your house. You didn't really do anything wrong, you just didn't follow the letter of the law.

Later in the CNN.com article,

Writing on their blog, her parents said, "Ashley's smaller and lighter size
makes it more possible to include her in the typical family life and activities
that provide her with needed comfort, closeness, security and love: meal time,
car trips, touch, snuggles, etc."

So closeness, security, love, touch, and snuggles are dependent upon a person's size.

"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of
it," they wrote, adding that while they support laws protecting against
involuntary sterilization, they believe the law is "too broadly based" to
"distinguish between people who are or can become capable of decision-making and
those who have a grave and unchanging medical condition such as Ashley."

So, removing one's uterus causing sterilization is a by product of the procedure. Also, people who are perfectly healthy but have severe mental retardation now are characterized as having "a grave and unchanging medical condition." To label a person as having "a grave and unchanging medical condition" only sets us up for the next step of taking them out of their misery via euthanasia. After all, as Dr. Diekema (quoted above) said, "disabled children (who) are traumatized by menstruation." So if you are traumatized by a normal aspect of being a human being, we don't help you to work through that trauma. We sterilize you. We take our your uterus. Also, don't you think it is odd that this little girl who is apparently so disabled, so mentally handicapped with her "grave and unchanging medical condition" would even know she was menstruating?

Do you see how these people speak out of both sides of their mouths? She will be traumatized, but she is too disabled to understand the ramifications. Either she isn't traumatized and doesn't understand or she is traumatized and does understand. However, in spite of her understanding of what is done to her, I understand what was done to her and therefore I need to speak up, speak out against it. I hope you will as well.

As Mark Stroh of Washington Protection and Advocacy System stated in the article.

"The implementation of the 'Ashley treatment' raises serious concerns about
the continuing discrimination faced by people with disabilities --
discrimination which is often based in stereotypes about their potential and
value as individuals"

For the complete text of the article, visit the following website.




Neil Cudney Director of Pastoral Ministries. said...

Amen. The implications are profound. It challenges the vary definitions of personhood. The measure of a society is in how it treats and values its most vunerable citizens - it will be interesting to watch what will result from the law being broken? The Church needs to speak and live out Luke 4:18.

bingo said...

I have to disagree... There's two ways of looking at someone's disability. Are they capable of participating in decisions about their life or not? If not, it means that other people must decide what's best. If she's completely dependent upon the parents for her care, rather than putting her in an institution, they're making alterations to her body to allow them to care for her. People get older and can't lift, turn, move bodies. I really can't fault them for this type of thing.

Neil Cudney Director of Pastoral Ministries. said...

Bingo, the dilemma of ‘other people knowing best’ is itself problematic. Although on the surface, it may appear a ‘reasonable alternative’ if the choice is to live in an institution or live at home – but this is a smoke screen to a larger issue. We live in an amazing world – the assistive devices that are available are significant. If we are concerned over the ‘impersonal and intrusive’ nature of these devices, how is it more impersonal and intrusive than the decision to remove and alter the body chemistry of a person? I do not want to unduly harsh on the parents – the commitment and journey of having a significantly disabled child is monumental on every level. But, I fear, the decision is partially motivated by the belief it is more acceptable, or palpable to be a child with disability, than a full grown adult. The wider implications of this decision on how we as a society view and treat persons with disabilities is at stake.