katerade Posted February 8, 2007 Report Share Posted February 8, 2007 I cant find the original story, but heres an editorial about it: It's wrong to keep disabled girl as an 'angel' ANDRÉ PICARD The history of treatment of people with physical, developmental and psychiatric disabilities is a bleak one, replete with systematic cases of abuse, both individual and collective. Because of their perceived shortcomings -- mental retardation, twisted limbs, behaviours that violate social norms, being a burden on society -- people with disabilities have been ostracized, lobotomized, sterilized, institutionalized, euthanized and even sent to the gas chambers. Sadly, in the 21st century, we continue to add new chapters to this age-old book of horrors. Consider the case of Ashley X, a nine-year-old girl in Washington State who suffers from static encephalopathy (severe brain damage of unknown origin). She cannot walk, talk, roll over, sit up or speak. She essentially lays where she is placed, usually on a pillow, hence her moniker "pillow angel." In 2004, Ashley underwent a hysterectomy (removal of the uterus and ovaries), radical mastectomy (removal of the breast buds) and appendectomy, and she was infused with high doses of estrogen to fuse her bones together so they would stop growing. Ashley's parents, a middle-class, college-educated couple, requested these "growth attenuation" procedures to ensure she remains at her current size, 4 foot 5 and 75 pounds. Details of the case were published in the medical journal Archives of Pediatric and Adolescent Medicine in October, and then, this month, the story vaulted into the mainstream press after the parents posted a defence of their action on a website (http://ashleytreatment.spaces.live.com). The response has been impassioned, to say the least. The couple, the girl's principal caregivers, argue (just as they did before the ethics board that approved the unusual medical experiment) that keeping Ashley small will facilitate her care and that depriving her of sexual characteristics will protect her from sexual abuse. The parents say that what they have done to Ashley is not for their convenience but for the girl's comfort. They say the medical procedures are not cruel; rather, "what is grotesque is having a fully grown fertile woman endowed with the mind of a baby." There is no question Ashley's parents love her. They care for her deeply, and want the best for her. But what they have done is wrong. It is beyond grotesque. The doctors involved in this butchery should be ashamed of their actions. They have violated one of the fundamental tenets of the ethical practice of medicine: Never do deliberate harm to anyone for anyone else's interest. The surgeries and drugs have no direct benefit to the patient, and that makes them inappropriate. The sole purpose of growth attenuation is to keep Ashley portable and cute. If cutting off the girl's breasts and amputating her uterus and ovaries is acceptable, why stop there? She is being tube-fed, so why not remove her teeth? Cutting off her arms and legs would certainly make her easier to dress. And she is incontinent, so why not replace her colon and bladder with colostomy and urostomy bags? A slippery slope? Indeed it is. The parents say the only reason they have gone public is so other parents of "pillow angels" can learn of the treatment and follow suit. What we are seeing here is a glaring manifestation of societal prejudice. Disabled children are seen as angelic and innocent; sexually functioning adults with disabilities, on the other hand, are viewed as disgusting and fearsome. Is it really true that using hoists and lifts to move people with severe disabilities is more dehumanizing than carrying them in your arms? Does the added burden of changing sanitary napkins in addition to continence pads really justify mutilation? Should not everyone, disabled or not, sexually mature or not, be protected from sexual abuse? Ashley takes the bus to school, where she spends a few hours every day. Like many parents of disabled children, that is the only respite her parents get from around-the-clock caregiving duties. Unquestionably, parents and their children (of all ages) need more help, more support and more understanding. But in Ashley's case, the parents have corrected what did not need fixing. They have applied an invasive, ethically dubious medical solution to a pervasive social problem. The challenge of integrating people with disabilities into society, affording them the full rights of citizenship they are entitled to, is ever-present. Due to advances in medical technology, an increasing number of children (and adults and seniors) are surviving with incredibly challenging conditions. Their care must be grounded in ethical decision-making, their rights protected as vigorously as those of everyone else in society. The way to deal with children with lifelong behavioural, physical and psychiatric problems is not to artificially maintain them in a permanent child-like body. Care, like people themselves, must evolve, grow and adapt. Children are not bonsai trees to be pruned and reshaped to suit the limitations or prejudices of their caregivers, or of society in general. Ashley, like every other child, is entitled to reach her full potential, no matter how inconvenient that may be to others. apicard@globeandmail.com Link to comment Share on other sites More sharing options...
katerade Posted February 8, 2007 Author Report Share Posted February 8, 2007 heres a link to the actual story: http://www.guardian.co.uk/usa/story/0,,1982370,00.html search 'pillow angel' for more on this Link to comment Share on other sites More sharing options...
eise Posted February 8, 2007 Report Share Posted February 8, 2007 hmm...this is an interesting case. I understand why one would think it unethical to 'mutilate' a little girl that did not medically require it. On the other hand, her parents have to take care of her 24 hours a day. It is much easier for them to carry her when she is smaller. Is this 'convenient'? Sure, but what are the alternatives? The author of the article suggested hoists and lifts to move Ashley around. But usually what happens is the parents become unable to care for their adult child and instead place her in an institution (long-term care facility). What is better for the child? to live alone, dependent on strangers, or to be with her loving parents? Instinctively, I think the surgery was a little extreme. But I do hear where the parents are coming from.... Link to comment Share on other sites More sharing options...
muchdutch Posted February 8, 2007 Report Share Posted February 8, 2007 I hear of this story a while back. I can understand where the parents are coming from, but it really is a very slippery slope. While it would be easier for the parents, I think the reasoning for the surgery is quite selfish. That poor little girl has to go through those surgeries! Since she has severly limited intellectual capabilites, imagine what that must be like for her. And when should parents forego their surgical intervention to 'save' their children? At what point do you draw the line? Also, it may not be best for her to be institutionalized, but eventually she will outlive her parents (I am uninformed with the expected life-span of such a condition, forgive me) and will have to be institutionalized anyway. Perhaps the best option would be homecare if the parents can afford it, or to research an institution where (hopefully) the staff doesn't turn over very quickly and will develop a repore (sp?) with the patients - if such a thing exists. In my opinion, this alternative, while it is their right to choose, is not appropriate. Link to comment Share on other sites More sharing options...
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