Thursday, November 18, 2010

Will technology help us avoid more Ashley X's?

I read an interesting post over at the Bloom site. "Technology: Hype or Hope". I, for one, think technology brings a great deal of hope! Here's one little excerpt...

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations. (emphasis mine)

What a great point, Ms. Castelane!

When I read about all the wonderful technology that is out there, I wonder about all the children who are "locked in"...minds that function, bodies that don't...and how some of these technologies may help to "unlock" them. Then I think about how this will affect proponents of the Ashley "treatment".

Those who promote g.a. also promote outdated concepts of "static brains" that will never change. They talk about children who have "the mentality" of babies and that it is not possible for any progression to be made. They are peddling falsehoods like the snake-oil salesmen of old...and parents are buying into it and are irreversibly altering their children's bodies based on these lies.

Brains CAN change and grow and develop. In the severely disabled, they may not do so "typically", but they do change. Parents with severely disabled adults will almost always attest to this fact. It remains difficult to impossible, however, to really know just how much these people understand, when they cannot do even the slightest movement consistently with their bodies.

Now, we have technology (changing and improving at lightning speed) that may be able to unlock the potential for communication in our severely disabled population. Yes, it won't work for every one, every time, but will it work more often than not?

What will doctors tell parents about g.a. then? Will they continue to spew the old party line that their children will never change and that, in the end, they won't know what is being done to them, so it's okay? Or will they have to change their tunes, given that a child could be assessed for communication ability with new technology? Proponents of g.a. want parents to start the protocols as early as possible...counselling for it by the child's third birthday. Does that allow enough time for a child's brain to develop sufficiently to be outfitted with the new technologies? How will parents feel, then, to have so drastically affected their children's physical selves if, in years hence, they discover their children are able to communicate?

I can only hope that new technology, made readily available to the severely disabled an their parents, will make g.a. a dinosaur concept promoted only by dinosaurs in medicine.

1 comment:

  1. Good read Claire. The rewired brain of someone like my own son, though, might present a hit and miss situation. Even computers exist that can compose poetry. After this technology is implemented there will still be the question of accuracy (think critics of Koko the gorilla), interpretation.
    Nevertheless, Inshallah advances happen soon!