Friday, March 16, 2012

Pillow Angels, Growth Attenuation and The Ashley Treatment

William Blake, Songs of Experience


I first heard the expression pillow angels, I think, in an issue of People Magazine (correct me if I'm wrong because I don't have the time right this second to check). Basically, the term refers to those children whose disabilities are deemed severe enough to their parents and doctors that they are given hormone treatments to attenuate their growth and thus make "it easier to care for them" and "give them a happier life."  They are described as "angels" because they're pure and innocent, their little heads resting on pillows to the end of their days.

I'm the type of person that has immediate and very intense instinctual reactions to things, and when I read about Ashley, and her parents' decision to attenuate her growth, to give her hormones to stop her growth, nip her breast buds to keep them small and remove her uterus and ovaries in a complete hysterectomy -- well -- it made me nearly sick to my stomach. The expression pillow angels is particularly repugnant to me, having that sort of treacly sentiment that drives me insane (think Welcome to Holland, God only gives you what you can handle, everything is a blessing and a treasure and all that jazz).

I like my angels fierce.

Suffice it to say that while I dreaded the onset of puberty for Sophie, I never once considered removing her uterus to spare her the pain and inconvenience of menstruation. Why not, some might ask? Like I said, this feeling, this knowing, comes from a very deep, instinctual place, and I don't mess with it. I honor it. It's easy and natural to fear what we don't know; I have found that when we reach what we've feared, it's never as bad or as difficult as that unknowing.


The Ashley Treatment has sparked much controversy in the disability community, and better minds than mine have argued unceasingly about it, but when I read this article yesterday in The Guardian newspaper, I decided to state my own feelings about it. I've actually been asked, on numerous occasions, by well-meaning people why I wouldn't give Sophie a hysterectomy.

And this is why, and it's pretty simple: I believe it to be barbaric. I also think that cutting your face up to make it look younger verges on weird, too.

If I were a truly good Buddhist, I would strive to do so, but I don't feel a whit of compassion toward these people who would do such a thing to a child. I am stunned into wondering whether it's one of those impossible conundrums -- there are some people that agree with shit like that and others that don't, and despite the cajolings, good intentions and explanations on both sides, neither side will meet. For that reason, I'm not sure these kinds of things should be legislated, so while I deplore a hospital like Seattle Children's that condones and actually performs growth attenuation, I don't necessarily think it should be made a criminal act. But again, better minds have argued for this sort of legislation, and I might be persuaded.

Reader, thoughts?


30 comments:

  1. I should say right off the bat that this is the first I've heard of this -- it has not yet crossed my radar -- so this is a very immediate and visceral response: I am in COMPLETE agreement with you. It sounds, to me, like a form of "loving" rejection, if there is such a thing. I say loving because the families must believe they are doing this out of love, and rejection because they are clearly not truly accepting their child unconditionally to do this.

    As an aside, it reminds me of a marketing executive at an organization where I worked -- it was an NGO supporting elite athletes with physical disabilities -- who asked me, in the middle of a meeting, why paraplegics and quadriplegics don't just have their legs amputated -- would that be easier? And yes, I resigned that job as quickly as I could.

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  2. It just feels barbaric to me.

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  3. I too have read and written much about growth attenuation. There is nothing which could convince me that the procedures described are not brutal and barbaric. They are an intrusion on the dignity of the person and certainly a denial of Ashley's civil rights. The courts there also stated the procedure should not have taken place with a court approval and someone to represent Ashley without a vested interest in the outcome.
    While I also believe the parents love their daughter, I believe the procedure was more for their ease of care and convenience. Perhaps it also mirrored society's lack of supports for the disabled and their care givers.
    Simply put, wrong, unjust and should be banned by law. I agree with your disgust.

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  4. By the standard of "barbaric", cancer treatments and surgery certainly seem barbaric, so how can that standard easily apply? I cannot imagine what kind of opinion people might have about the sex change operations some of my friends have had.

    It's not fair, I don't think, to let some 'natural course,' decide what is best for us let alone how we earn dignity.

    I just don't know why our having sex organs is what gives us dignity. This just isn't necessary to the dignity of people who lack them for various reasons, nor is height necessary... surely this is not the problem? It is the pro-active stance?

    In some cases, this is what allows a family to function, to keep a child at home. And I think it is brave to think so hard about what is necessary for GOODNESS and not just what nature has designed for us (by the way, nature has no design, and evolutionary theory now suggests the process of evolution is random. So forgive me if I won't honor "natural" over what is good and best. I'd have been dead in childbirth if I took that route. Actually, far sooner. My friends would be dead. My friends would be trapped in their bodies.)

    And sometimes I think we forget that not all disabilites are like the ones we are familiar with. Of course most children would not benefit from this. But the nurses I speak to think this is a very good idea, one in their patients' best interests. I think they are right when they suggest to me that people like to just imagine they know what every case is like. (And no one can do this.)

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  5. It was People magazine. I remember that story. I had a visceral response too. I was horrified, and then i wondered if I had a right to be, having not walked a mile in those shoes. I appreciate knowing that your response was the same. I confess i read this with a yessss! echoing in my brain.

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  6. Lisa: OMG

    Phil: I know you've written a lot about this issue, and I really appreciate your convictions and viewpoints.

    Anonymous: Thank you for commenting. While I appreciate your thoughts, I think there's a vast philosophical difference between making decisions like the ones you've outlined (sex change, childbirth, etc.) for ONESELF and making them for another person, however cognitively impaired. I have grappled with these issues personally, and struggle nearly constantly with maintaining not just my daughter's integrity but her very identity.

    Angella: Thanks for clarifying about People Magazine! I would imagine there are two "camps" to this kind of issue --

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  7. I cast my vote with yours.
    And if you have a spare fierce angel wandering around looking for work, send her/him my way.

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  8. Dear Friend- again. I do not know, having no experience in this arena. I couldn't help but feeling that the arguments used for the surgery remind me just a bit too much of the rationale for getting a pet neutered.
    Do I need to say more?

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  9. Ms. Moon: If you mean the arguments used liken a child to a pet, then, say no more. If you are advocating on behalf of pets, then I would love to hear more. :)

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  10. Denise: I imagine you to have a fierce angel perched -- right there -- on your left shoulder. He might be sleeping right now, but let's wake him up!

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  11. The Guardian is a Brit mag...not Canadian. Thanks.

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  12. Claire: Oops. You're one of the better minds that I noted. Thanks for that, and I corrected it!

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  13. I can't help but think that this type of treatment will someday go the way of the lobotomy.

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  14. One reason I can think of off the top of my head not to subject a young woman to an unnecessary hysterectomy is that the hormonal disruption could have neurological consequences that are not well understood. There is a complex interplay among all the hormones in our bodies and when you interfere with that there can be unintended consequences - emotional, cognitive and physical.

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  15. Much in the same way that I feel physically ill when I read/hear about a disabled or mentally ill person being having a lobotomy, this "pillow angel" stuff sickens me. It just absolutely sickens me.

    There. That's my opinion.

    -Julia O'C

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  16. I had never heard of this .. and it saddens me that Seattle Children's condones and performs this ... it reminds me of nazi experimentation and I hear echoes of lobotomy too. What do they do to the boys? would there be more outrage if it is similar (i.e. neutering)

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  17. Well, I love you and I think you love me, so that should be enough. Right?

    Maybe I am too new and naive on this journey of mine. New maybe but baptized by fire that is for sure, scorching fire at that. And then again,maybe you will say that traveling this road with a child like ours,has nothing at all to do with this topic. That this is simply a human dignity issue not a disability issue. Much like female genital mutilation I suspect.

    But I would disagree with you on that. the need to be part of the 'club' and all. I find that unless you have a child in this world of ours, this daily battle in the trenches, you could not possibly understand what it is like to even entertain such a thing as The Ashley Treatment. And, I might even go so far as to say, unless you have a DAUGHTER in this arena, you cannot possibly understand to the same extent either. Because I feel that to be true as well.

    With that said, I have, in certain moments, contemplated removing Zoey's uterus at some point in the future. I have discussed it and debated the topic and have not excluded it as being something we would not do. And,certainly not to make it easier for me. If I wanted easy, I would have opted out at 22 weeks in my pregnancy when I had the chance. Hell, tonight I cleaned up poop that literally went to just below her shoulder blades. Into her long, beautiful auburn hair. I most likely will be doing that forever. I wouldn't blink an eye at taking care of a monthly cycle. I do however think about the pain and discomfort. Because, there will be that.And she will not be able to tell me how to help her, what to do for her, or articulate and understand what she will be feeling. Also there is in, the mix of discussion, the possibility of her being taken advantage of, by someone, in the future. Sure I could do what others do, and put her on birth control but that lends itself to a whole host of other issues. I think she absolutely HAS suffered enough pain. Of any kind. Chemo being case and point. Amongst some other niceties.

    If I did choose this for my daughter, I do not think it makes me less of a person. Less of a human being. Less of a mother. It just makes me different. Certainly not barbaric. I know my heart. Those that know us,know who we are and what we are about and how desperately we love this child.

    I will never, ever know, with 100% certainty, any of the choices I make for my minor children will be the right ones, I can only wish and hope and pray, that my heart, overflowing with love for them, will guide me.

    Geesh, this and the Catholic thing,doesn't look good for us, eh?

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  18. Zoey's mom, Heather: Thank you for your comment, and I will think about it. I think I said somewhere in that quickly penned post that I really believe our brains are wired in a way that makes it very difficult to be persuaded to change what we think and feel instinctively, and I believe this whole matter of growth attenuation is one of those things. I have thought the same of brain surgery, to tell you the truth, have wondered if at some distant point in the future people will look back at the times when hemispherectomies are standard and just shake their heads, much as we do about blood-letting and frontal lobotomies to anesthetize those with mental illness. I don't know, Heather -- I have to say that I believe Zoey's bodily integrity is as important as her mind and spirit, and I just don't think periods and potential sexuality are as dire as some might think.

    Steven Kusisto at Blind Planet has a brief but beautiful response to the increased news about the Ashley Treatment. Here's the link: http://www.planet-of-the-blind.com/2012/03/ashley-treatment-on-the-rise.html

    As for being Catholic, I don't consider myself a Catholic anymore. If there were a sacrament to divest myself of all ties to the current Catholic Church, I would do it.

    As for our friendship, I love you.

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  19. It is dehumanizing like so many other things done to our kids. They are treated as "less than":less than whole, less than human, less than dignified, less than entitled.

    Some day, some how the disabled will be acknowledged as a true, and fully human, part of the world

    The analogies to animals and religious issues are sickening too. I cannot tolerate the animal rights activists who put these animals above or at a par with my child. And the politics du jour (which may well be the blessing to all democrats) is not even close to this issue at all.

    Make no mistake, the onset of Puberty and its changes presented fears. Then it came and it was underwhelming as most other things have been. She's in a diaper anyway. It's really no big deal. Yes, she's bigger and a bit harder to lift. The only alternative to me is that she would not have survived, so the lifting is not that bad.

    Finally, If Maggie is a "Pillow angel", someone better have a vacuum ready. There will be feathers flying. Whether it's her or me ripping the pillows remains to be seen.

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  20. I was of course talking about ME being Catholic, my differing thoughts on the topic and the future of our friendship. Knowing in reality, that the friendship thing is all good of course.

    But, you know, if there were a sacrament, that would divest you and that is what you wanted, I would go with you and support you unconditionally, because I love you that much.

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  21. When I first heard about this, I was horrified. Like cutting off someone's feet to fit the bed. In fact, limbs are rather useless and even in the way for quadriplegics, so why not amputate them all? In fact, Ashley, too would be so much easier to care for if she just had the torse and head. Those damned limbs are just in the way.

    I have tempered my feelings somewhat. Nearly every parent I know with a non ambulatory big person for whom they care, has back problems, and they are often severe ones. I got hurt myself, buffering a fall for my MIL, and she, a large woman, has caused injuries for a number of people who care for her. She is far from the six feet and poundage of DreamMom (a blogger of a severely disabled child who has a lot of tips for the care of the such), yet there is no doubt that her size causes issues. But I don't think DS or I will amputate those near uselesss limbs. (My MIL's dementia are making those arms of hers deadly weapons)

    But it just feels so wrong! I know a number of disabled young men have to be institutionalized when parents simply cannot handle them anymore with size and strength being a main issue. Some have been beaten or hurt by their children who possess a strength and have a size that make them truly a danger and cannot be controlled. And though, the answer should be more help and other controls, those things simply are not available to some people. They are already at the edge of what they can manage and one more thing will put them over.

    But to keep them small for convenience sake? THis issue lies somewhere between medicating for other control issues and chopping off limbs. Between dieting to keep a person a manageable weight and adding drugs to keep them from growing up. It crosses my personal line of ethics, but what about the caretaker who is at that edge but is still by far caring for a person far, far better than any other given alternatives?

    My opinion is firmly on the "don't go there" side. It should not be permitted, IMO, just like assisted suicide should not be permitted for those who are disabled any more than either procedure should be permitted for those who are disabled. Take the word "diabled" out of the picture on this one, and it clearly tells you the horror this is.

    It would have been a lot easier to care for my hell raising sons to have stopped the hormones and kept them small. I could have continued to be a great mother then.

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  22. "...to avoid the discomfort of fully-formed breasts in the future." WTF? Maybe we should go one step further and give our children an IV drip of Morphine to avoid the discomfort of headaches or constant antibiotics to avoid the future discomfort of possible sinus infections.

    Having once sat on the board of a hospital's Ethics Review committee, I would be intensely curious to know how the hospitals who are performing this treatment view it. I feel like it is incredibly presumptuous and barbaric, especially with a nonverbal child who may be suffering terribly from the effects of the treatments but cannot communicate that. God forbid they discover five or ten years down the road that these treatments have horrible adverse side effects.

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  23. I was worried that when Katie started menstruating that she would lose her mind. She has a problem with blood, that's putting it mildly. Turns out she's fine with menstruating, doesn't freak her out at all. As for her having a hysterectomy, I thought it would be a good idea before her periods started but now that I see she's okay, it's not necessary. There are risks associated with all surgeries and there is no point in subjecting her to those risks when there is no benefit, mental or physical, for her.

    I live in a province where there was mandatory sterilization of handicapped people from 1928-1972. Convincing a doctor to perform a hysterectomy on a healthy young girl would have been a monumental task, thankfully a task which I did not undertake.

    Katie was able to handle far more than I had been willing to give her credit for. And yes, I would rather have her fierce (and she is) than passive.

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  24. and see http://www.guardian.co.uk/society/2012/mar/16/ashley-treatment-ericas-story

    barbaric, indeed. The integrity of people who are maimed or broken (as Rob Hummel has it) should be sacrosact and I am glad that you, as a carer, are of the same opinion.
    Thank you for this post (ad greetings from Swiss Sophie)
    Anne

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  25. PS: Biblical angels ARE fierce (see Luke 2, v.8-20 "the shepherds were terrified by the appearance of an angel")
    a

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  26. Darn it. Blogger must have eaten my comment because I came back to check in & it's not here. I fear the moment has passed but I'm going to throw this out there... First gut level reaction? It's horrific.

    But my husband threw his back out the morning you wrote this and couldn't bathe our 3.5yr old, much less get her in the car. That caused me to wonder much of what Catherine asked above. What happens when mom & dad can't lift anymore? What if it makes the difference btwn home & an institution? (but WOULD IT?)

    I simply don't feel like I can judge that decision making process.

    But that said, I also wonder about infantilization. Is it emotionally easier to care for a child-like person, rather than a big ol' messy grown up? That thought makes me queasy.

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  27. I think the "Pillow Angel" term is barf-worthy, as has already been noted.

    My instinct is to lean in the same direction as you -- stunting a human being's growth to make life easier or, dare I say, more convenient sounds awfully extreme. It objectifies the person, doesn't it? Like Ms Moon said, it's like getting a pet neutered.

    On the other hand, I'm sure the parents and medical providers who make these decisions do not do so lightly. So I can feel for difficulty of their position and their desire to give their child what's best.

    Wishy-washy, I know.

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  28. I am stuck at the fact that these 'options' exist .
    I would never judge another parent for how they love their child, but.
    I could never be convinced that any of this is right. AT ALL.

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