OK...so I am continuing from the last post in working through various ideas with regards to the Ashley "treatment". I am addressing the idea of the "infant mind" of Ashley...her perpetual babyhood...and how the concept pervades the site the parents put up. As a justification for the procedures she endured, it appears weak...the adult body is not the enemy it is made out to be, the concept of a static brain is scientifically unsound, the concept of "mental age" largely an inaccurate way of describing brain function and ability.
Next I am going to look at something that is a bit more on the psychological side...and you will notice I will be waxing somewhat philosophical at some point...since I don't actually ski (yes, some Canadians can't ski), I have to learn how to wax something (and don't go all rude on me folks...I'm already there...think flooring...!)
Erika wrote to me and mentioned this particular angle...that it is easier to "embrace the role" of being a caregiver to a disabled child than that of a disabled teen or adult. I can see that this would be true in many ways. The care of an infant matches the care of a severely disabled individual. Thinking about changing the diapers of a fully grown adult is not particularly pleasant. It's easier to conceive of doing that very personal sort of care on someone who is smaller and more childlike. Hence, Ashley "the Pillow Angel" provides a conceptual model that parents can accept more readily than Ashley, the grown woman who menstruates and has bowel movements, and sweats, etc.
Interestingly enough, I am in contact mostly with parents who have teenagers...in diapers and all the rest...with severe disabilities of various sorts. None of them would consider attenuating the growth of their child in retrospect. Isn't that interesting? Here we are in the thick of it and still we wouldn't go back and change anything. I think this ties in with my next point...here comes the waxing...
The growing up process for normal kids is also a growing up process for parents. We learn to let go as much as our kids do. As a child grows, we learn to see and respect them as individuals with individual lives. They aren't "ours"...they belong to themselves and we, as good parents, can only provide guidance along with the physical care. When a child is born with severe disabilities, the process is delayed considerably since the care of the child is similar from babyhood through adulthood. That separation that occurs is harder to define...or to create...or to understand as in "stand under".
But it can...and does...happen. I can tell you from personal experience that it has only been within the last year and a half since my child's switch into the land of disability that I have come to see her as an individual with a life of her own....one for which I am not entirely responsible. It was a like a bolt of lightning, such was its impact on my thinking. Though her physical care and stimulation are 100% my responsibility, her inner life, her reason for being is not. She is here and that defines and proves her individuality and her right to life.
This awareness on my part has come with her maturation. Had she not grown up, I would not have come to this conclusion. I would have fallen into the trap of viewing her as a perpetual infant and all that entails...all the control, all the envelopment, all the imposition of me onto her. The startling result of this awareness is not what you'd expect: I am now more respectful of her, more aware of her, more caring and care-ful because I am serving another person, not an extension of myself, or a baby obliviously dependent upon me. My role has transformed...or better yet...has been broadened to include the respect for her individuality. As such, the decisions that I must make for her that she cannot make for herself are done from a much different perspective. I am keenly aware of her separateness and I must take this into account. When I think of the procedures to attenuate growth, it is my sense that these represent the most invasive assaults on the personhood of a human being...a violation of trust. Parents are entrusted with a child's life..life "in trust"...trusted to protect the child and allowing a child to grow up with full bodily integrity is part and parcel of that duty to protect.
To claim that surgeries occur all the time and that one's "bodily integrity" is affected with every sort of medical intervention is just blowing smoke. The fact of the matter is, attenuation of growth affects healthy tissue...to remove a diseased part of the body is an appropriate action to save a life...to fiddle with perfectly healthy organs and bodily functions is another thing altogether. It sets a dangerous precedent...and I will discuss that in the next post.