Monday, January 08, 2007

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~?
____________________

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
____________________
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.
____________________
[~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?
____________________
[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?

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21 Comments:

At 7:09 AM, Blogger patrice said...

okay, I read the article and the parents' blog and another couple of items relating to this story. I'm going to go out on a limb and say that the parents are lucky that these treatments can logically be portrayed as being specifically designed to enhance ashley's quality of life, because an interesting byproduct of this stance IS that IT WILL BE EASIER FOR HER CAREGIVERS. it might be a chicken or egg scenario, and I'm sure the parents will, forever, say that it was for ashley, but to pretend that it's not going to be infinitely INFINITELY easier for the parents is a disservice to the very argument they want to support.

a few things they said over and over: it will be easier to move ashley around, and boredom and discomfort are her worst enemies. I am fairly certain that you can move adults around and change their surroundings so they are not bored. but it will be much easier FOR THE PARENTS if they can do this without as much effort.

ashley will not have to have the burden of a menstrual period or cramps. and conveniently, the parents will not have to worry about cleaning up after that either or giving meds for cramps.

and ashley's big breasted discomfort will be alleviated and she won't be a target for abusers. this one, I feel, is the most egregious. surely it would be weird to see a small childlike person with a big rack, but to say that big breasts, which SHE DOESN'T EVEN HAVE YET, are a source of discomfort is ridiculous in this context. and to further say that they want to remove temptation for caregivers is insulting to the caregiver community, I would think. they go on in the blog to say that now she won't have lumps in her breasts or breast cancer, because there is a family history of that. breast cancer is so prevalent that EVERYONE has a family history of it anymore, but is that a reason to remove them? the fact is that they removed them so that their small child who has no uterus could look somewhat normal. I don't fault them for this at all, but I do fault them for their reasoning.

that's what it comes down to for me. I understand that this was the best thing for ashley and I think they did the right thing. I think their justification is ludicrous and makes it easier for zealots and those with dissenting opinions to poke holes in their story.

let's call a spade a spade.

 
At 9:16 AM, Blogger JJisafool said...

Wow, I just about totally disagree with you, Patrice.

I think the first difference is between this procedure making it easier (as you say) to take care of Ashley and making it possible (which I would choose) for her parents to take care of Ashley. Especially as the parents age. 125lbs of dead weight is no joke, and such care is more than fulltime work for strong healthy caregivers. It is reasonable for the parents to say, as they do, that at some point her needs would surpass not what they are willing but what they are able to provide.

But, really, we are splitting hairs there. I think they made their argument adequately, and that it is unfair to add to their pain by trying to find a way to call them selfish. But this is what I TOTALLY disagree with:

and to further say that they want to remove temptation for caregivers is insulting to the caregiver community

Because, actually, I'd say their claim is just prudent. Sexual abuse by caregivers is startling common. People are fired from geriatric care every year for raping Alzheimers and dementia patients. Women in conditions similar to Ashley become pregnant. The type of care Ashley requires is demanding work, and not nearly well-paid enough, and sick people are often hired to care for the sick. Given what my mother reports to me from the geriatric and home health worlds she has worked in, Ashley was in very real danger of being sexualized.

I just can't find a way to condemn these people, not even through holes in their argument (mainly because I don't see them there). And, you have to recall that the blog is a response, and when you are responding to zealots, a "yes, but..." doesn't really fly.

 
At 10:06 AM, Blogger the beige one said...

and to further say that they want to remove temptation for caregivers is insulting to the caregiver community, I would think.

Actually, I think it's an underestimation of sexual predators, in my opinion...

 
At 12:26 PM, Blogger patrice said...

while I completely respect both of you and your opinions, I don't feel that this is simply removing temptation to preemptively head off sexual abuse. it seems pretty extreme to remove breasts in order to solve for this potential - however great the potential is, it's still potential - problem. I see this as an extremely slippery slope, as do the parents, as they had to consult lawyers and laws to make sure they were within their rights to do so.

like I said, maybe not as clearly as I could have, I feel that their actions are justified, just not in the ways that they describe. and I would feel less uncomfortable about their positions if I felt they were being 100% honest. I just don't feel like you can say that everything they did was ONLY for ashley's benefit when clearly they benefit as well. at least acknowledge it, so you don't seem fakely altruistic. that's my point, love it or not.

specifically, I have a hard time believing that the breast removal was solely for the purpose of protecting her from predators - predators that they most likely will not encounter since they have already gone through the trouble of making her ... more portable, if we're really being frank. I wouldn't want a daughter that looked like a child, acted like a child, and had big boobs. I get it. but to give the sole reason as to head off potential abuse, I just don't see that as being the whole truth.

at the end of the day, though, it doesn't matter what you or I or anyone thinks, until we're on a medical ethics board and someone cares about our opinions. but you asked, and I'm spouting off. I feel that without dissenting opinion, we don't get to examine our own morals as much as we could. should is another question - but could.

 
At 12:42 PM, Blogger the beige one said...

of course I welcome your spout off...perish the thought. And I kind of agreed with you with my last remark...oh, were you talking to both JJ and ~A~?

 
At 4:54 PM, Blogger JJisafool said...

Patrice, I totally agree with you that this is a slippery slope, and that we must express dissenting views in order to develop some kind of moral compass. And, strong as my responses always are, I love that you were the first one to jump in and comment.

That being said, I still think you are being unduly harsh with the parents argument. In the largest sense, because their blog has to be read as a response to criticism, because that was why it was generated, and this defines the rhetorical choices of their argument.

More specifically on the breast thing, I was pointedly responding to the "disrespectful of caregivers" angle because sexual predation is so much more alarmingly common than most people expect. But, that wasn't the only rational for breast removal. I'll grant that the cancer thing seems a stretch, but they present that more as an additional than deciding benefit. More pointedly they talk about the potential additional discomfort of being top-heavy and unable to move, and the fact that she cannot hold herself up in a chair and so must be strapped across the chest.

No one of the reasons they present need be enough on its own, but you have to consider all of them together.

Even so, it is fair to have different opinions on their argument, even when we agree on the conclusions, and I totally respect your opinion.

 
At 5:20 PM, Blogger ~A~ said...

It would be unwise to say that the parents did this 100% for Ashley. It's obvious that they did part of it to help them care for their daughter. I would totally understand if a someone like my friend *T* and her husband, both stand tall over the 6 foot mark, were to do the same to one of their children. Their youngest daughter at 4 years old was wearing a size 8 - 10, because she was as tall as an average 8 - 10 year old. If Ashley was their child, I would not think twice if they chose to stunt her growth if it helped them care for her.

JJ said pretty much what I was going to say about the caregiver community. For the most part there are good people working in that field, but there are a lot of bad ones. Ashley's parents could easily drop her off to any number of qualified facilities to care for her, but they didn't. And that in itself should count for something.

But I also see the slippery slope and that frightens me. I've been meaning to start blogging about a woman I know who is so lazy in her own parenting that she has conned so many doctors and people in to thinking that her children are autistic. What does that have to do with Ashley and her parents? It just means that I understand that there are parents out there that are just plain lazy and selfish and could abuse this treatment.

And, Patrice, you're totally right, at the end of the day it our opinion doesn't matter because we are fortunate enough to not be in their position. These discussion are important to have not just to examine our own morals, but to exercise our empathy and compassion, which all to many people neglect.

 
At 6:36 AM, Blogger patrice said...

thanks, guys...you're the best group of people to argue with ever! so supportive.

I know I come off harsh, totally. and a little uncompassionate. I think because the setup for me was done by compassionate ~A~, I was looking to read the article and the parents' blog thinking that I would see something that would compel me to completely understand their plight. and I do, I really do. but I think I was expecting to see something that was, to me, more heartfelt from the parents. instead, I got alot of repeated justifications that I couldn't really get behind, and some sugary-sweet "she is our pillow angel and we are so blessed" kind of stuff, and it just didn't ring true to me. I think this makes me a callous bitch, perhaps frigid in the heart. and extremely judgemental. like, so judgemental that I sort of feel uncomfortable with sharing, but I'm doing it anyways.

while I do understand all of the reasons, I just can't say enough times that they just don't seem to acknowledge the obvious, which is it makes it easier for them. that's what I am all hung up on. it's dumb, I know. it makes all the other reasons seem like they're trying too hard. the parents doth protest too much.

whatever, we can go around and around all day. to paraphrase an episode of the simpsons, "growth stunting for some, tiny american flags for others!"

 
At 10:34 AM, Blogger Stine said...

I hesitate to even jump into the fray because I am really tired of hearing that I don't have children so how could I POSSIBLY know, but...I have to agree with Patrice regarding the possibilityof being sexually preyed upon.

As a sexual abusee, I can safely say that while the possibility exists, it is NOT a given.

Seems to me a certain president of ours gave similar reasonings for going to war with Iraq.

Let me also say that I don't envy the parents' decisions on this matter. And I do have a lot of compassion for what they must be going through, but for me, that specific argument, doesn't hold much water.

 
At 11:07 AM, Blogger patrice said...

you can certainly have an opinion, not having children. I don't have a "pillow angel" and yet I'm talking about it as if I'm an expert.

 
At 12:04 PM, Blogger the beige one said...

Please...I don't have kids, and I instigated this whole thing.

This bears repeating: I am interested in discourse, which means that everyone's thoughts matter. It is when discourse becomes trenchant, hostile and needlessly argumentative (which has happened in this forum, granted) that things become dull and repetitive.

So, if you've been holding back, please don't. Pipe up and say something.

(Besides, it lets me know you're out there, after all.)

 
At 12:38 PM, Blogger JJisafool said...

At the risk of sounding trenchant, hostile and needlessly argumentative...

Sexual abuse was not the only reason for boob removal. There isn't any question there. As to whether fear of potential sexual abuse makes any sense at all, a Google news archive search nabbed me these, out of the top five hits, happening within the last month:


This

And this

Sexual abuse of the disabled is COMMON whether you want to accept it or not.

Exactly how much risk of sexual abuse is the right amount for a child?

And yes I too believe that no kids are required to have an opinion on this. Everyone needs to help develop the moral compass for issues like this.

 
At 1:06 PM, Blogger the beige one said...

Sexual abuse of the disabled is COMMON whether you want to accept it or not.

Dude, are you on conflict pills this week?

I don't think anyone here is arguing that sexual abuse of the disabled isn't common...

For my part, I believe that a sexual predator is as likely to molest an 14-yr-old encephalitic girl who hasn't developed breasts, as one who has, depending on their predisposition. d'ya ken?

Taken from this viewpoint, the removal of the breast buds only decreases the possibility of molestation from a specific subset, and thus renders the decision squarely back on the side of ease of care for the parents (along with the related discomfort she may go through).

 
At 2:40 PM, Blogger JJisafool said...

TBO, you say subset, but I'm willing to make the leap that of the group of freaks who would abuse an immobile female, the subset would be those willing to do the same to an apparent 9 yr old girl, or 14 yr old for that matter.

I guess I'm just kinda stunned that this is the point of contention.

Comes back to what I was originally saying about the creepiness factor. I think the natural response is to want to create distance from the situation, which helps it stay in the hypothetical.

Last few words on my way out the door - let's be careful of phrases like "ease of care." The Ashley Treatment is making things easier for her parents, but mitigating how much more difficult they might get.

Oh, and, Stine, baby, sweetie, love you, but the comparison to Dubya and Iraq is WHACK. He created a threat where he knew none existed and drew all of us in with him. These parents recognize the possibility of a very real threat, and make a decision that affects only their family.

 
At 3:41 PM, Blogger JJisafool said...

Or, rather:

The Ashley Treatment isN'T making things easier for her parents, but mitigating how much more difficult they might get.

 
At 3:52 PM, Blogger the beige one said...

That's probably a fair distinction.

 
At 8:51 PM, Blogger Stine said...

For my part, I believe that a sexual predator is as likely to molest an 14-yr-old encephalitic girl who hasn't developed breasts, as one who has, depending on their predisposition. d'ya ken?

- Ya know, if I was gonna molest a 14-year old girl, I'd totally want her to have tits. Big ones.

And JJ, love, ya know, my argument maytotally be WHACK, but as I'm not the pedantic debaters that you, my husband, and the Beige are, kinda don't give a shit. Mwah!

 
At 11:57 AM, Blogger the beige one said...

I'm not pedantic debaters that you, my husband, and the Beige

I believe that I've been called a "literalist" by the bunch you mention, which kinda makes the "pedantic" charge false...I believe I'm just an instigator, or "muddler" as JJ has dubbed me.

 
At 9:45 AM, Blogger Prego said...

What I want to know is why they can't post pictures of some of them big-t*ttied relatives?

What this whole thing amounts to is what I call O.P.B. (Other People's Bid'ness).

There is absolutely no right answer in this scenario since both sides have strong arguments. Yeah, it seems a little obtrusive to jack up the homegirl in such a fashion, but then again, it's no more obtrusive than menses all over that 'pillow.'


Sweet kid/Sh*tty situation. The parents know what's best for their own family. If someone wants to prop up their own big-t*ttied, menstruating pillow angel in front of endless Maury Povich shows and Teletubbies, more power to 'em.

p

 
At 6:45 AM, Blogger keda said...

dammit have you got comment verification on or did this basturd just eat my long old comment??

 
At 6:45 AM, Blogger keda said...

nooooooooooooooo!
oh bollocks.
later.

 

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