The whole thing becomes a slippery slope really. What is and isnt acceptable? When does the child get a say? When they can talk? When they can scream? When does their body become their own?

—–something for parents and caretakers and professionals to think about, and then think again…….

From writing about Charlie so much online I have become even more aware of the difference between what I say about him, and who he is—who he really is. I don’t know how Charlie would represent himself, would think best to represent himself, or how. It’s very easy for a parent to be presumptive—-and very hard to discern where to let go and let be.

They called for judgement.

They say ON THEIR BLOG that they’re trying to ’sell’ this to other parents. Ashley is 9 now, the surgeries happened when she was 6, at least as I understand it (had to make sure everything took, approval takes time, I imagine the boards at the journals were shocked initially…).

This isn’t people digging up random things and passing judgement, though a friend of mine did allude to this in a blog shortly after finding the article, WAY before the circus it has become. Her parents are asking for publicity.

But they didn’t ask Ashley what SHE wanted. And I KNOW a child with a dx of ’static encephalopathy’. She grows and develops and learns. She’s got a wicked sense of humor. I know kids with Rett Syndrome. They grow and develop and learn.

And they all communicate, in different ways. No one really KNOWS Ashley’s “mental age” (an absurd concept) because there’s no way to test. And I could go on and on about praxis =/= smarts but I won’t. I know, though, in my heart of hearts, that there’s more going on in Ashley’s brain than anyone has ever given her credit for. Just by virtue of being on the planet this long.

The comparisons between medical interventions to correct problems and the bizarre series of medical interventions named “Ashley’s Treatment” are really off the mark, although I’ve seen a few doctors and ethicists making the same case lately.

Steel rod insertion are a mostly successful attempt to avoid the *known* life-threatening complications that come from severe scoliosis.
The medical procedures performed on Ashley were done to satisfy the parent’s fears about some hypothesized problems in the future – all or most of which could have been addressed in other ways not involving body-altering surgery.

And Kristina – THANK YOU for getting the importance of the parents going public on this. I have brought this up with every member of the media I have talked to – and not one has seen fit to relay that point to the public.

The journal article was published in *October* and received little attention from the press. The current wave of publicity is due to the parents’ decision to post a blog about themselves.

They didn’t do this because people were talking about what they did.

They posted their blog because people *weren’t* talking about what they did.

When they did that, *they* started a big public and political debate over public policy. And when that debate started, it was dominated by them, their supporters and a couple of the worst bottom-feeders in bioethics.

Silence didn’t seem like an option to many of us.

I am 5′4″ tall, 125 pounds with the help of amino acids and prednisone (without, maintaining 100 is tough). And yet I speak not only to dignity and personhood-yes, personhood, which was totally ignored, and is something SCIENCE has been trying to define for ages-but to SAFETY.

First there are the risks of the surgery itself-greater in the neurologically different (I’m having a devil of a time getting a VNS, which can be done under local if you aren’t too squeamish, because I’m neurologically FUBAR). Then there’s issues like anesthesia awareness-Ashley couldn’t say “uh, that hurts, STOP”. I don’t know if Elisabeth can or not. Maintaining a patent airway. Removing mechanical ventilation. Preventing seizures during & after seizures. That whole heart stoppage thing. All bigger risks in the disability population.

POST surgury. Maybe you closed the growth plates. But that just controls the SKELETON. Lungs, heart, liver, kidneys, intestines, brain, spleen, et cetera…those are all getting bigger. Those are controlled by pituitary hormones. Are you going to rip out the pituitary? This is an honest question. Because then the number of pills you’re giving is astronomical, and again, heaven only knows the repurcussions and research shows adults who are DONE growing still have insulin like growth factor, which is from growth hormone.

And you now have to deal with hypothyroidism, adrenal failure (which make each other worse, the latter can kill you if you take a relatively small injury that freaks you out enough), total ovarian failure (and we don’t even know EVERYTHING estrogen does, but ugh does sudden lack of estrogen and progesterone suck), diabetes insipidus-there is no hell like dehydrating in spite of drinking 4 gallons a day and peeing every hour on the hour, and…I know I’m forgetting at least 2 hormones. I’ve only been in the endocrine arena for 11 months, hypothalamal dysfunction. Or nonfunction.

The whole thing becomes a slippery slope really. What is and isnt acceptable? When does the child get a say? When they can talk? When they can scream? When does their body become their own?

And I have been dependant on others, for nearly a year, quite recently. It sucked but making me more portable wouldnt have made it suck less. It merely would have made my shopping in the children’s section for pants that wouldn’t fall off less noticable. It also would have given me the annoyance of having to prove my age more often than I do (which is frequently, and I don’t even DO anything). When I was sick I would have welcomed a wheelchair to get out–and I am a gymnast through and through.

We need to be very careful when we alter people’s bodies, particularly without their consent. Convenience and best interest arent always the same thing.

http://www.youtube.com/watch?v=aMOWK0Nb6L8

Yes—-thank you for writing all this here—–I hesitated for a long time to write about Ashley due to many of the concerns that you raise here. I certainly am in no position to judge her parents’ choices for her; I do think that her parents’ choosing to write publicly about the procedures performed and also their rationale for it call for some kind of response. While my son is disabled, the specifics of his disability of course differ greatly from Ashley’s, and yet I wish, and think it imperative, that all of us parents of disabled children “work together instead of working against each other.”

From my understanding of discussions in disability rights communities, one question of much concern is that of “presuming competence.” At least as Peter Singer writes in defending the choices of Ashley’s parents, there is the assumption that they and he know the full extent of her mental state and condition, and of her suffering, and of her competence. We certainly need to use the medical knowledge our contemporary scientific culture has provided us with, and we also need to keep using our powers of discernment to judge what is the best for our children.

Thank you again—-