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Sliding down the slippery slope

Jan08

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Normally I enjoy nothing more than a good, rousing bout of judging. I put on my oversized judgment cap– it’s fur-lined!– and I recline in my judging chair, which has this swivelly headrest so I can shake my head in disgust for hours without suffering from neck strain, and– wait, where was I?
Judging! Right! As I was saying, I relish the chance to hold forth on what everyone who is not me should be doing with their lives; but when the topic is the well-being of a child, and when I’m about to discuss said child in a public forum, and invite others to join me in the judge-fest, I start to feel a little queasy. Which is why it’s been so hard for me to write this week’s column. Because I’m talking about Ashley.
In case you haven’t read about her elsewhere, Ashley is a severely impaired nine-year-old girl. Diagnosed with static encephalopathy, she will never progress mentally past the age of three months. And now, due to the efforts of her parents and the team of specialists they employed, she will physically remain a nine-year-old for the rest of her life.
Her parents, with the full agreement and cooperation of Children’s Hospital and Regional Medical Center in Seattle, authorized Ashley’s physicians to surgically and hormonally stunt Ashley’s development. She underwent a hysterectomy, breast-bud removal, and estrogen treatments to halt her growth.
This series of procedures, which they dubbed the “Ashley Treatment,” was performed, as the parents argue on their site, solely for the child’s benefit. Keeping her small will allow her parents to hold and comfort her, and bring her with them wherever they go. It will also lessen the risk of bedsores and associated infections. The hysterectomy eliminates the future discomfort of menstruation; the removal of her breasts will sidestep any problems she might have with large breasts, which apparently run in her family.
They call her their “pillow angel,” and when I first heard that I hopped right into my judging chair. (It’s actually sort of a judging chaise longue. But I digress.) I cringed when I first read it. I cringed more when I read, “We call her our ‘Pillow Angel’ since she is so sweet and stays right where we place her– usually on a pillow.” And I find it unnerving that Ashley’s picture is trotted out before the media, whereas the privacy of the rest of her family is respected, with their faces blacked out in group photos.
And most of all, I cringed when I read how they altered her. I get that they did this solely for her own comfort and accessibility, but I’m not sure that I’m comfortable with their reasoning. Using the same logic that she should remain as small and as portable as possible, you could argue a case for removing any non-vital body part on someone this disabled. The removal of her breasts, they said, was partly to protect her from potential sexual abuse. It’s true (and horrifying) that sexual abuse of the disabled happens all too often. But does breast removal protect her? Little girls are fetishized, too. And anyway, does this kind of abuse have anything to do with sexual appeal?
Then again, if I were in their position, I would do everything in my power to help my child be as comfortable and happy as she could be. Anyone who has a three-month-old will tell you that all they want is to be held. These parents want to care for Ashley and comfort her in the manner any three-month-old needs and demands. Is that wrong? And calling her a “pillow angel” doesn’t mean they don’t have all the love in the world for her; it’s just (to me) an unfortunate choice of words.
And then I think, who am I to say? I’m not disabled; I don’t live with someone who is disabled. So I hunted the blogosphere to find out what people with disabilities, and those who love them, had to say.
At Fit of Pique, Thirza argues that a disabled adult is not equivalent to a child, no matter how low the IQ: ” I have been as close as you can be to someone with an IQ of 23 for 28 years, and I know that she is completely and fully human, like all of us. She has feelings, she has memories, she has preferences around movies and clothes and foods. She even has crushes. She went through a horror movie phase when she was fifteen like any other teenager”
“One thing Ashley had in her life that was like the rest of us was the ability to grow up into a physically adult woman’s body. And now she doesn’t even have that. And people are celebrating, even though it’s given her an entire new layer of disability to deal with.”
Over at The Gimp Parade, Blue points out that Ashley may develop beyond the doctors’ estimations: “the medical experts may have done what so very frequently happens to disabled people and discounted [her] far too early. This discounting and underestimating the medical community does is a key aspect of the institutional and societal discrimination disabled people face every day.”
And on Did I Miss Something?, I’mfunnytoo discusses her fear that the “Ashley Treatment” is leading us toward more ethically questionable procedures: “None of the sympathy given the parents does *anything* to assure me that when the *physician led ethics committee* agreed to this, that there was any kind of discussion of “this far, but no farther.” … I didn’t hear: “We, the educated medics, would *never* consider this kind of involuntary bodily mutilation for a person say who was *just as physically disabled and difficult to move as Ashley,* but will have the brain, and emotions and sentience of an *able adult.*”
These are all compelling voices, and they make the “Ashley Treatment” sound more and more wrong-headed. But then I go back to the parents’ site, where they say that no one has the right to judge them unless they have a disabled child themselves. I don’t disagree with them, and it’s why writing this post has been so hard.
I think more than anything, what sickens me is that the general public’s judgments have been directed at the parents. They’re in a terrible position, and they made a choice that they believe is for the best. And while they were the parties who ultimately directed their child’s care, they did it under the supervision and guidance of medical professionals, professionals who are there to provide considered, dispassionate recommendations. And it’s those professionals who should be the focus of any outrage, not the parents.
Most of all, I feel like I don’t have the right to be saying any of this. When I read about the physical and emotional toll parents with disabled children face, I want to delete this whole post, and write about something I’m actually qualified to address, like kitty cats. These are parents who dread the day that they will no longer be able to hold a son or daughter who will always be, mentally, an infant. Who am I– who is anyone– to say they’re wrong for wanting to keep their children happy and comfortable?
The only people I can really summon up any anger toward are those responsible for our foundering health care system, leaving the disabled and their families to conjure up their own jury-rigged solutions. Until the entire system undergoes a complete overhaul– and I don’t think any of us are holding our breath for that leap forward– I’m afraid there will be more families hurtling themselves down this same slope.

About the author

Alice Bradley

http://www.finslippy.com
Alice Bradley was a regular contributor to Alpha Mom, writing about current events as they related to parenting. You can read about her daily life at her personal blog, Finslippy.


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22 Responses to “Sliding down the slippery slope”

  1. Karen Rani Jan 08 at 10:00 am Reply Reply

    I was of mixed feelings when I read of Ashley’s story in our local paper. As a parent, I know how difficult it sometimes is to make decisions, and when I gave this story a considerable amount of thought, I still could not say what I would do in their shoes, but I did conclude that I have no right to judge them. Given their situation, they made choices that were based on their daughter’s comfort, happiness, and well-being. This just tells me they love her. Isn’t that what we’re supposed to do as parents? Love our children and keep them safe and happy?

  2. Miss Britt Jan 08 at 10:55 am Reply Reply

    Well said. My first reaction – like yours – was to flinch at the term “Pillow Angel”. And I’m still not sure I’ve moved beyond that.
    But as you said, my frustration is with the doctors who advised a parent in this way, and with the system as a whole that leaves a parent desperate for measures such as these.
    And a socitey that is all too quick to place blame and cast judgement – before they click on to the next blogline feed.

  3. Amy Jan 08 at 10:58 am Reply Reply

    Well said.

  4. Leah Jan 08 at 11:28 am Reply Reply

    Thank you for refusing the comfort of your judging chair on this one. I, too, have abstained. I agree with everything you said. Thanks be that my son is healthy, and prayers go out that all of my future children are, too. Our family mantra is: WE ARE SO LUCKY. We really are.

  5. karen Jan 08 at 2:47 pm Reply Reply

    As the mother of a child with Down syndrome (admittedly a far cry from Ashley’s plethora of issues), I am well aware of just how much a parent can change the list of things they thought they would never do or the things they thought they wanted for their child. Because until you are in that position there is no saying how you would react. Before he was born I made an internal list of things I wanted for my son, and I have spent 3 years unmaking that list and seeing with clearer eyes just what his real needs are.
    Not that I condone such drastic measures as the Ashley Treatment, but since I’m not in the position to make those choices, I know I cannot judge those who are.
    As for the resources available to parents of disabled children? There are a lot out there, but it’s still not enough, by far.
    Wonderful, insightful post.

  6. kyran @ Notes to Self Jan 08 at 3:34 pm Reply Reply

    i don’t have anything to add, ‘cept, very nicely done, Alice. Aa rare display of restraint, maturity and class for the internets.
    k.

  7. DDM Jan 08 at 4:05 pm Reply Reply

    My son is a special needs kiddo. Through all of the coverage of Ashley’s story I have placed myself firmly in the ‘not judging’ camp. I’ve been called pathetic, a whiner and a user for things I’ve said on my blog. The first thing I learned from my son, was that you never know how you’re going to handle a particular situation until you are in it yourself.

  8. Jenn Jan 08 at 4:07 pm Reply Reply

    Blogged about this as well, and ditto on the not wanting to talk out of my ass about something i know nothing about. It’s hard enough raising normal kids without being judged every time u walk into a library without putting a pacifier into your toddler’s mouth without wondering what the anti-pacifier camp has to say. Don’t think there’s an expert in the world who can tell us for sure what works best.

  9. owlhaven Jan 08 at 4:21 pm Reply Reply

    I agree– this is a terribly dcomplicated issue. I think in the long run you just have to trust that the parents are making the best decision they possibly can….
    Mary

  10. Sara Jan 08 at 5:14 pm Reply Reply

    You did well on this very sticky issue. Their terminology is unfortunate, but the family is certainly doing what they think is best.
    In college, I worked for some family friends taking care of their multi-handicapped adult child. The challenge of dealing with someone who has strong desires but no capacity for common sense or communication other than actions was phenomenal. Families to care for their handicapped children in-home and are truly trying to do right by them have a challenge outsiders can’t possibly appreciate or judge. Ethics aren’t as clear once a hard situation is your reality.

  11. ozma Jan 08 at 8:19 pm Reply Reply

    Alice, this a great post and I’m loving how Wonderland is digging into all these important things but you slip them to us in your funny way. (Although I’m still seriously freaked out that the world is ending in 42 years.)
    Someone in my family is very much like Ashley and I have no judgments to make but when I read it, I really felt like I understood their choice. There are no words to describe what it is to have a child that cannot ever walk or talk or progress. Partly, because of the incredible love such children receive (against what some might expect) and partly because of the phenomenal struggle the parents experience to care for their child. My aunt is younger than my mother but looks so much older and may live 10 or more years less than my mother if things go as they are going. With all that love and her superhuman perseverance with her son, it’s taken some of her life away. It’s that hard and my aunt and uncle adore their son. My cousin has had surgeries that ‘normal’ people don’t go through in order for him to live in a wheelchair and be healthy that way. I would never second guess any decision they would make on his behalf and I couldn’t imagine doing that with Ashley’s parents. I understood the debate as partly one about sexuality and adulthood how we understand those–the modification of women to be more girl-like presses our buttons, probably in important ways–but when a person has these issues, maybe some of these categories have to be re-thought.
    You can’t hug my cousin anymore, at least not easily. That seems very sad to me.

  12. snoot Jan 08 at 10:51 pm Reply Reply

    I am not yet a parent, although I’m trying hard. But as the close older sister (who may need to be guardian) of a special needs now-adult, I say: if that’s how you judge, judge away. You come down on the side of “person,” and I stick my chin in the air and wave my fists around in favor of that stance.

  13. Melanie Jan 08 at 11:58 pm Reply Reply

    Great post. I read the article and immediately wanted to judge, too – blah blah blah medical science what’s next taking away rights blah blah… But then you made me sit back and think that, really, I can’t say anything because I don’t know. Maybe if I were those parents I’d do the same thing. So I’m going to actually not get up into my judging chair (where I usually perch high above everyone in my superior judgey-ness) and I’m actually going to keep debating right vs. wrong and probably never come up with anything concrete. And I suppose that’s how it should be – there is no firm answer here.

  14. Kate Jan 09 at 11:17 am Reply Reply

    My husband told me about this, initially, and I was completely horrified. And then I read an article about it, and then I googled the parents (eloquent and articluate) blog and read the whole thing and now I don’t feel like I have any right to an opinion. They seem like they love their daughter and are acting in her interests, or at least think they are. How could I blame them, or judge them, for that?

  15. Ty Jan 09 at 1:13 pm Reply Reply

    My mother used to work for a special-needs school and she worked with some of the most handicapped cases. One child who was around 13, and about 5’2″ tall, could barely see, couldn’t move except for jerky gestures, had the mental age of a baby (not sure of the exact mental age, but under one) and had to be fed baby food. It killed my mother, because she had been abandoned to the state. Her family couldn’t handle it, gave up all parental rights, and put her in a home.
    I am not sure I agree with all of the things this family chose to do with Ashley, but at least they care enough to do whatever they can so that they are never in a position to have to/want to give up their child to the state. They have found a way to be able to always give her the care she needs. For that, I cannot help but think they really did this in her best interest.

  16. jozet Jan 09 at 2:00 pm Reply Reply

    I have entirely mixed feelings on this. I’ve worked with severely and profoundly diabeld children and teens, and having done so, it makes the answers and questions all that more complicated.
    What I will do, however, is agree with the doctors who pointed out that what they hope this debate does is at the very least put in the forefront the overwhelming challenges that any parent caring for a profoundly disabled child face, 24-7-365, and largely, alone.

  17. DIANE SHIPLEY Jan 09 at 10:18 pm Reply Reply

    Best commentary on this I’ve read, well said Alice. xx

  18. Megan Jan 10 at 11:50 am Reply Reply

    A sticky situation well handled.
    Having moved away from the US to live in a country that offers a wealth of support for disabled children and their parents has only served to heighten the contrast of how little our country does to provide the help these families need. Amazingly Americans are (almost) always quick to jump in and judge and wag fingers but when it comes to helping alleviate the issue to help ‘solve’ the problem, um well not so much really.
    I am happily not in the position to have to make those kinds of decisions. Luckily, if I ever am, I’m now in a country that is dedicated to providing real help and support that might help make different decisions possible than what Ashley’s parents have chosen. But I’m not in their shoes, there’s nothing I’m doing to help them, so how can I judge them or tell them what to do?
    It seems like a slippery slope true, but I’m not standing on it.

  19. Robbie Jan 11 at 12:02 am Reply Reply

    After reading this, I went over to the parents blog, and I’m afraid it sounds like a pretty good idea. There seems to be many benefits – what would be the benefit of letting her grow so big no one could pick her up? Ethically questionable questions be darned, I would do what I could for my child!
    You quoted a blogger with a sister with an IQ of 28? 3 months of age doesn’t even compare. The Gimp Parade thinks she might develop some more? To what, 6 month intelligence? Remember, her parents aren’t even sure Ashley can recognize them!
    Just because Ashley’s parents are doing something one way- won’t set in stone the path for everyone else. I think it just helps us all to have more choices.

  20. Kookaloomoo Jan 11 at 12:41 pm Reply Reply

    Speaking as someone who works with disables adults for a living: Ashley will never be a fully-developed adult. She will never know that she is not “normal”. She will never know, in any kind of intellectual capacity, what has been done to her. As a result, even if her parents WERE only acting in the interest of convenience to them and Ashley’s future caregivers, there is no harm to her. She will never have the capacity to experience life at any level beyond the instinctual “brainstem” level that infants experience life at. If she were mine, I would have long-ago removed her feeding tube and let her go.

  21. meretyping Jan 13 at 3:06 am Reply Reply

    well-written, alice, of course, as is much of everything written by people who -do- have experience with a similar situation. and to the poster above me, euthanasia is illegal. not to mention that’s awfully presumptuous of you, or most anyone whose brain is following a similar path, to use what disturbingly limited cold hard facts you do have to decide so off-handedly that you would “play god.” (dream mom’s recent posts explain her opposing view beautifully.)

  22. Terry Jan 17 at 4:30 pm Reply Reply

    Well said, Alice. I am going to choose to judge only those who feel that everything needs to be decided because it might set a bad precedent in a related case… the “slippery slope”.
    The fact is, that precedent can be taken into account, when trying to figure out a situation but the world is full of individual cases, and there is never going to be a silver bullet for handling such sensitive and painful issues.
    Ultimately, it comes down to one thing… make decisions with your brain and your heart, and not necessarily in that order.
    Terry

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