While writing my previous blog post, “On ‘Transcending Pain’”, I came across this article in The Globe and Mail. It contains a recurring theme in the media when writing about disabled people, and especially, disabled children.
Ian Brown, fhe author of the Globe and Mail article has hit all of the necessary components:
1) Parent(s) “coping” with raising a disabled kid? CHECK.
Bonus points awarded if parent is single. Extra special SPARKLY bonus points awarded if parent is widowed.
2) Kid is a “disruption” in the family (an extension of #1)? CHECK.
3) Kid is “inspiring” despite #2, and is there to elevate able-bodied parents’ self-esteem/increase understanding of humanity/enlighten people lucky enough to spend time with him/bless with presence/teach us ______? CHECK.
4) Parent invents cutesy patronizing name for disabled kid (not as bad as “pillow angel”, but bad enough)? CHECK.*
The Ashley Treatment promulgated for these “pillow angels” makes me sick (and thankfully, is not yet mandated by law). I probably didn’t need to explicitly say that; if you read my blog regularly, you will have discerned my feelings about such things.
Thanks to the Disabled Feminists for referencing stuff.
Inspire THIS!
I come from a different perspective on the “ashley treatment”. I think it is incredibly creepy to call them
‘pillow angels’, but it does make the daily care a LOT easier. With, of course, a LOT of caveats– someone who is bed bound, especially if they need a lot of PT to prevent contractures, AND who cognitively is devastated such that denying them normal development is going to be traumatizing in and of itself. Pretty tall order especially if surgery is required for early puberty. In a perfect world, every parent would have enough help for all these things once their child reaches adult size and I do see parents who can and have done this for their children. I also see nightmares where the child has decubitis ulcers, poor care (not bathed, not enough PT and getting contractures, not even put in a chair because it is too hard to move them etc). It should always be in the best interest of the child and to give it a whimsical name like ‘pillow angels’ or even the “ashley treatment” is not appropriate. It is a pretty invasive intervention– like posterior spinal fusion or nissen fundoplication– and should not be undertaken unless it will make the child’s life better in terms of daily living or avoiding invasive surgery down the line.
I wonder if similar “treatments” are done to kids with similar disorders when they are male. I’ve only heard about cases in which the kid is a female. Questions that come to mind are:
-who will this treatment ultimately benefit most? the child or the adult?
-when quality of life becomes compromised, is it more cruel to implement these treatments for a child simply to make their care easier, which by definition extends their “life”?
-who is to say whether the process of puberty is a good thing or not, for a person to have to endure? By altering that process, effectively we alter human existence. If we want to give a child the best chance of a full life experience, why eliminate from it a normal course of events, like puberty? Are parents squeamish?
In a few days, I’ll have another post published, which discusses end-of-life care, from the point of view of doctors.