Spout Off: Forever Young

[Edited to add a tip o' the keyboard to K. -- tbo]

Hello all,

The Missives return with a special edition of the Spout Off series, which has been largely absent for a bit too long.

This edition is brought on by this article in The London Times' website, regarding a controversial operation that took place here in Seattle a little over two years ago. (Great job by Children's in keeping this thing tightly under wraps for that long.) What happened: A pair of parents agreed to keep their encephalitic daughter developmentally stuck (both physically and mentally) at the age of 6 for the rest of her life.

The article's a fascinating read, if wholly and truly disturbing (the details surrounding her operation are shared); and that's without getting into the charges of eugenics that are being tossed about, or visiting the parents' blog.

Helping us to talk about this today are a proud poppa and a proud momma: Father of Livvie, and Spout Off Stalwart, JJ; joining him, in her Spout Off debut, mother of Pixie, Button, Elf, the Muffin Man, and Laundry Hexer extraordinaire, ~A~.

As usual, ladies first. ~A~?
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I have to admit that my first response when I read "Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6" was a knee jerk, "how the fuck could anyone do such a thing to a child?" But after reading the parents' blog, I began to understand that they had to make a decision that no parent should have to make and I am more outraged at the callous comments people have made towards these parents.

Majority of parents, including myself, are given the blessing of having fully functioning children or never knowing what it is like to have a child so ill that every decision made is self-doubted because it really does mean life or death.

Ashley's parents will never know the joy of her first steps, or her first day of Kindergarten. Even if Ashley's parents left her intact, her mother will never know the excitement and joy of going shopping for that first bra, celebrating her first menstrual cycle, or the pain of comforting Ashley's first broken heart; there will be no graduations. Either way, there was never going to be a father-daughter dance to "Turn Around"** at Ashley's wedding, first child for Ashley or any firsts for that matter. What we have to keep in mind, as outside observers, is that the way Ashley is will never change. She will always be a three month old infant. Although they state on their website that this decision was not a difficult one to make, my opinion is that on an emotional level it must have been. (But, I'm known to be highly sensitive.)

Having said all that, I do believe that Ashley's treatment should not be the norm for those with disabilities. Many children with Down Syndrome, cerebral palsy, and other birth defects have grown up to lead normal lives, obtain jobs, get married and have healthy full-functioning children. It's not an easy life for them by any means, and they may need help from friends and family, but they can live and thrive.

We are a society of conveniences and we tend to forget that just because we can, does not always mean we should. That also goes for passing judgment on the decisions other parents had to make for their ill or disabled children.

On a personal note, if I had a child like Ashley, would I do the same thing? Probably not. As the Fuquad may have told some of you, Pixie was born with an extra finger. Even though it wasn't a full finger, it was part of her, and it was hard for me to decide to have it removed.

If I struggled with something as small as a finger tip, then I don't think I could make the decision they did.

**Lyrics to "Turn Around"

Where are you going my little one..little one
Where are you going my baby ..my own
Turn around and you're two
Turn around and you're four
Turn around and you're a young babe
Going out of the door

Where are you going my little one..little one
Where are you going my baby..my own
Turn around and you're six
Turn around and you're eight
Turn around and you're a young lass/lad
going out of the gate

Where are you going my little one...little one
Where are you going my baby ...my own
Turn around and you're young
Turn around and you're grown
Turn around and you're a young girl/man
With babes of your own
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JJ replies:

I’m going to echo quite a bit of what ~A~ had to say, mainly because I followed a similar arc in my thinking about the case. Much like ~A~, my first response was of the “what the fuck?” variety, though I do get my head involved in issues like this often enough to recognize that as a knee jerk reaction.

It is hard not to have a knee jerk reaction to the Ashley Treatment, and I think that the reaction is important for reasons I will get into in a moment. If one has any kind of open mind at all, it doesn’t take long contemplating the implications of the case to begin to see how complex it is, how unsuited to the mere knee-jerk. I confess that I didn’t read the parents blog until I noted that ~A~ had, and now think you absolutely have to in order to have an opinion on this case.

Much as ~A~ does, I believe after reading the blog that the decision to arrest Ashley’s development did not have anything to do with convenience for caregivers and family and everything to do with Ashley’s comfort. Ashley isn’t going to get better, a reality that critics of the family can’t seem to accept (much as they could not accept the same truth for Terri Schiavo), and further growth, breast development, and the onset of sexual maturity and menstruation would have only contributed to her discomfort.

The critics would seem to focus on the procedures as “unnatural,” but isn’t the entire goal of medical science to subvert the will of nature? By their logic, an appendectomy is unnatural, a caesarian section is unnatural, cancer treatment is unnatural. While, as ~A~ said, I don’t want quite want such invasive therapy as Ashley’s to become the norm, I can’t condemn it as more unnatural than medical science as a whole.

The question becomes, of course, where we draw the line: as ~A~ conjectured, she wouldn’t make the same decision with her own child, but what if the procedures weren’t a matter of comfort for the child but life and death? Or, what if you are older, have no extended family network, are in fact the only support for the child, and recognize that the child will outlive you, that others will have to accept the responsibilities and risks for your decision?

Back to the knee-jerk reactions for a moment, and in particular my own. For some reason, it was the breast bud removal description that most freaked me out, actually getting me to twist uncomfortably in my seat. But, really, every aspect of this story creeps me out. I think it creeps a lot of people out. And I think this is because medical science has advanced to a point that we have yet to show the willingness to wrestle with ethically, morally, even aesthetically. People live longer than ever, people survive far more conditions than they ever have. Would a frontier family ever have to face such a decision? No, of course not, because the child would have succumbed to some related ailment by this time. Ashley’s case, and specifically the furor around it, is a manifestation of a lazy culture, one which wants to make black and white of its grey world.

This thought comes out of the family’s term, to me the most creepy and chilling aspect of the case, “Pillow Angel.” But, it seems a bit of recognition and acceptance on the part of the family, because in Ashley we have the kind of case that pushes the boundaries of what it means to be a person. Not to be merely cruel, but Ashley is undeniably human and yet displays fewer characteristics of personhood than, say, my two cats, and is closer to a particularly finicky ficus. Surely, such descriptions would shock many people, because we are used to thinking in only person/not-person and human/not-human dualities. But, what I believe the Ashley case illustrates is a need to accept that we must learn to understand humanity on a continuum, that as medical science allows many more such lives to continue, we cannot hope to fit them into our existing boxes. And that this willingness to stretch our thinking extends to such terms as compassion, dignity and comfort.

In other words, the furor over the Ashley treatment isn’t about Ashley, who it seems will undoubtedly live a more comfortable life, and it isn’t about her family, who clearly love and treasure Ashley for who and what she is (accepting such truths as the possibility that Ashley doesn’t recognize family at all), but it is about the general populace’s inability to accept people for what they have become, to stomach the future that we are creating.
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[~A~ replies:]

Although I said that I probably would not take their path if I was on the same road, at a life or death cross road it may be easier to be more decisive. Even though I stand by my opinion that a life or death decision is the cruelest one forced upon a parent, and one they should never have to make.

I have an online friend who's June 2000 child has been battling neuroblastoma for nearly 4 years now. I have been following their lives online the whole time and I still can't wrap my brain around the idea that they may have to decide to stop treatments and let their child's life run its course with out breaking down to tears.

I think that it is a good sign that we still have that "knee jerk" or creeped out reaction when it comes to something like Ashley's treatment. But what really gives it the power to create such emotion, especially in parents, is that the procedure is being performed on a child. It is still common place in this world that children are to be protected. Adults elect to have their bodies altered every day from piercing to sex change operations and we don't think twice about it. But I think I would have to say "What the fuck?" if I read that someone tattooed a child or pierced something other than their ears.

I know this is in the extreme, but makes for fun discussion:

Hypothetical story: Man and Woman want a boy. They tried to select male embryos but some how a female slipped in during IVF process and they gave birth to a girl. So in that last attempt to have a boy, they surgically alter the child to fit their wants.

Yes, this is extreme, but it could happen. I've been on online pregnancy expecting clubs with each of the kids and it's surprising to read the reactions of some people when they find out that the sex of the child they're going to have is not what they wanted.

I'm sure there's more I wanted to say, but I've been reminded that we need to go to the pet store to buy meal worms for a science experiment. Ironic, hunh?
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[JJ replies:]

I would like to throw down a few random thoughts that I couldn’t fit in above, but that might inspire discussion:

- On Ashley’s parents’ blog, they mention that they became comfortable with the growth attenuation procedure after learning it had been routinely used to stunt growth of healthy girls in the ‘60s and ‘70s because tall girls were less acceptable. How much clearer is the necessity for the (continuing) fight for gender equality when you learn we used the chemical equivalent of foot-binding within our lifetimes?

- Ashley’s parents also note that they found it impossible to find reliable, trustworthy caregivers for Ashley, and my own experiences with home healthcare providers convinces me that is true. How much more painful might some of the choices be knowing that a sexually-developed Ashley would be a target for rape, and would be exposed to more potentially-dangerous caregivers were the family not able to care for her?

- As part of getting our thinking more flexible on questions of humanity and personhood, a thought experiment: what does it mean to be bored (which Ashley’s parents cite as a key concern) at Ashley’s level of development?