Kittay is herself the parent of a child with severe disabilities:
My daughter Sesha is now a woman of forty. She, too, does not toilet herself, speak, turn herself in bed, or manage daily tasks of living, and she has no measurable IQ. Like Ashley, Sesha is so loving and easy to love that her impossible-to-articulate sweetness and emotional openness make it tempting to call her an “angel.” Still, we refrain. To love Sesha as she is, we must accept that, unlike an angel, she has a body that grows and ages.
Her basic position is that, the Seattle Growth Attenuation and Ethics Working Group's compromise on g.a....that it should be allowed only to children with severe cognitive challenges...is discriminatory toward that group of children.
I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.
She makes a number of astute observations about the nature of the discrimiation, this one targeting one always trotted out by g.a. supporters:
It is easy enough to grant the point that medical interventions aim at particular ills and thus “discriminate” by targeting the population who can benefit from the treatment. But consider some procedures that disabled children often face: gastrostomy tubes for feeding, spinal fusions for scoliosis, and tendon releases for spasticity. All may also be carried out on children not otherwise disabled, or they address a specific medical disorder, not a class of persons per se. Some, like gastrostomy tubes, may be more frequently administered to those with impaired cognitive function, but only because the impairment is often coupled with difficulty swallowing and ingesting food. Severe cognitive disability is not an indicator for these or for any other procedure. But the majority of the working group believe that profound cognitive disability is a necessary and sufficient justification for growth attenuation.Her conclusion, however, brings home the very real danger of g.a.:
The real supposition underlying the restriction is that severely cognitively disabled people will never know the difference—even though we cannot be sure this is true. And with that supposition, what else might we be able to do to this population? The long and gruesome history of abuses done to people with severe cognitive disabilities includes a litany of similar claims—that they won’t know the difference if a part of their brain is lobotomized, if they are deprived of clothing, if they are showered communally by being hosed down. Yet we have learned that once we stop supposing that they don’t know the difference anyway, we learn how often they understood the treatment as mistreatment.
The Pandora’s Box of horrors is opened still again when severe cognitive disability is the lone and sole indicator for a certain treatment. The shame of it is made that much worse when some turn out to be cognizant of their mistreatment. The risk that these demons will reemerge is too great for the procedure to be acceptable.
Posts
"Yet we have learned that once we stop supposing that they don’t know the difference anyway, we learn how often they understood the treatment as mistreatment.
ReplyDeleteThe Pandora’s Box of horrors is opened still again when severe cognitive disability is the lone and sole indicator for a certain treatment. The shame of it is made that much worse when some turn out to be cognizant of their mistreatment. The risk that these demons will reemerge is too great for the procedure to be acceptable."
Unfortunately there will always be those that will remain blind to even their own child's rights, preferring to see the "good" in what is good for themselves, and thus in extension good for their child. Also convinced that a particular treatment is palatable because no amount of convincing will elucidate for them that their child DOES have cognition.
This is further complicated by children such as my own son, who's only way of communicating disagreement is if there is significant pain present which allows his body to contort spastically with an accompanying scream and tears.
The subtlety of disagreement or discomfort is completely lost with a child such as my son and so it would be easy to see his behaviour as, at the very least, not resisting.
One day technology may come to the rescue but I fear until then this area, for children as extremely physically and mentally disabled as my son, will remain hopelessly gray.