FWD It's wrong to keep disabled girl as an 'angel'
- Below was posted on another group which might of interest here
It's wrong to keep disabled girl as an 'angel'
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
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
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
The challenge of integrating people with disabilities into society,
affording them the full rights of citizenship they are entitled to, is
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.
Thursday, January 11, 2007
ANDRÉ PICARD, The Globe and Mail