• Sun, Jan 28 2007

Peter Singer and Precious Ashley

This is what the Twelve Tables—the first written code of law among the Romans (449 B.C.)—has to say about what to do with a “deformed child”:

Cito necatus insignis ad deformitatem puer esto.
An obviously deformed child must be put to death.

The Latin words deformitas means “ugliness,” “disfigurement,” “blemish.” While I am not sure if “deformity” so defined was equated with disability—if by this we mean a physical as well as cognitive or intellectual disability—among the Romans, but I think this sense can, to some extent, be inferred. “Let there be a law that no deformed child shall be reared,” wrote the fourth century Greek philosopher Aristotle in his Politics. Indeed, as one contemporary philosopher notes, “During most of human experience, children like Ashley were abandoned to become prey to wolves and jackals.”

The contemporary philosopher cited here is Princeton University Professor of Bioethics at the Center for Human Values, Peter Singer. According to his website, there are “three easy ways to make a difference“:

  1. Do something for the world’s poorest people.
  2. Do something for animals.
  3. Do something for our planet’s environment.

More succinctly, give to Oxfam, become a vegan, ride a bike, if I may offer some simple paraphrases of the three points above.

But what about children like Ashley, the now 9-year-old Seattle area girl whose parents, fearing how to take care of her as she grew older and bigger, had doctors perform “the Ashley Treatment,” in which her uterus and breast buds were removed and estrogen given to her over the past two years to, as Time magazine notes, “keep her small”? Easier to “make a difference” (as one might infer from Singer’s “three easy ways“) by helping the “wolves and jackals,” the animals, whom “children like Ashley” were once abandoned to.

Singer wrote about Ashley in A Convenient Truth, an op-ed in the January 26th New York Times. Since Singer is infamous for arguing that severely disabled infants ought to be killed (see Taking Life: Humans (1993), it is not surprising that he thinks Ashley’s parents did the right thing. The treatment was carried out in her “best interest,” Singer writes in answering the objections of critics to what some have referred to the mutilation of a young girl. Noting that Ashley’s parents have written on their blog that “her treatment is not for their convenience but to improve her quality of life,” Singer writes:

….. it is also true that the line between improving Ashley’s life and making it easier for her parents to handle her scarcely exists, because anything that makes it possible for Ashley’s parents to involve her in family life is in her interest.

I am not so sure of how “true” the two points Singer makes here are. As the mother of a disabled child, my son Charlie, it is the case that he relies more than heavily on my husband Jim and me, just as Ashley is wholly dependent on others, and in particular her parents, for her care. But I do not see how “making it easier for her parents to handle her” can be so quickly equated with “improving Ashley’s life”—the changes to Ashley’s body would seem to have been performed primarily for the sake of her parents’ “lifestyle choices, as Jim writes in Peter Singer’s Pillow Angel. I am not entirely sure how a “smaller” Ashley can be equated with involving her more in family life, as Singer does not specify what he means (perhaps he is suggesting that this “smaller” Ashley might more easily be transported from place to place, so that she might have access to more family activities?). I can say, and with surety, that it is possible for a family to change what it understands to be “family life” in order to accommodate, to best provide for, the needs of a disabled child, whether moving out of one’s own house and into one’s elderly, and disabled, in-laws’ basement so that that disabled child can attend a school that best suits him, or choosing to engage in activities that best suit a disabled child’s abilities and preferences.

What stands out to me most about Singer’s sympathetic defense of Ashley’s parents in A Convenient Truth is the curious ways in which he refers to Ashley as compared to how he refers to animals (those wolves and jackals again). Singer rejects the argument that the treatment impugns Ashley’s dignity by noting that, while “we are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant,” we make no such rush to attribute such dignity to dogs or cats “though they clearly operate at a more advanced mental level than human infants.” As Singer notes in his “three easy ways to make a difference,” “Do something for animals”—-and do what you have to do disabled human beings to make handling them “easier.” Dogs and cats (and those aforementioned wolves and jackals) ought to have dignity attributed to them, but Ashley—a severely disabled, and now permanently stunted, child, “she is precious”:

What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her.

“She is precious” because she is loved (note the use of the passive voice) by others, but not in and of herself, but not she is herself, Ashley, a 9-year-old girl who lives in the Seattle area and who was born in the same year as my son Charlie. Again, Singer curiously, and rather messily, blurs the boundaries (the “line” referred to earlier) between Ashley and her parents; indeed, it would seem that there is no line at all due to the extent (as Singer notes) of her disability, and, most of all, to her having a mental capacity that “will never exceed that of an infant” or, as Singer himself notes, of a dog or cat.

Singer’s reference to Ashley as “precious” occurs in the final paragraph of his op-ed and is just one sign, I think, of a breakdown of the seemingly tough-minded, carefully reasoned, stance that A Convenient Truth draws on in defense of Ashley’s parents’ decisions. Having based his case on how little mental capacity, and how little of a self, Ashley has, Singer can only summon up one sentimentalizing (if not maudlin) adjective to describe Ashley: She is “precious,” a word that in its sweetness (rather out of character for what one expects in reading Singer’s works) recalls an adjective he uses in a previous paragraph, in referring to 3-month-old babies as “adorable” (the context is Singer’s mentioning that he is both a parent and grandparent). These words—”precious” and “adorable”—stand out to me because they are two words that I constantly hear applied to Charlie when people (relatives, strangers, all apparently well-meaning) do not know what to say in the face of a tall 9-year-old boy who frequently babbles like a baby: “He must be so precious to you. He is so adorable!”

Such words would not so readily, of course, be applied to “typical” 9-year-old boys and Jim and I try always to address and to treat Charlie as the 9-year-old child he is (as Ashley is). Those who tell me, in Charlie’s presence, that “he” is “precious” and “adorable,” however well-intentioned their remarks, are speaking about Charlie as if he does not understand. As if he lacks the mental capacity to understand. As if, due to the unusual neurological wiring of his brain, he cannot, will not understand.

When I first heard about the Ashley treatment and the removal of some parts of her body for the sake of her “quality of life” and her being “comfortable,” I wondered if some might apply such reasoning to say that, well, since autistic persons’ brains are wired abnormally, maybe it would help them “not suffer” as much if we removed…….

I am not going to finish that thought.

I am going to suggest a fourth “easy way” to make a difference, and it really is very easy.

When you have the opportunity to spend some time with a disabled child, just do it. Just sit down in the same room with them; just be, and be with them. The child may be lying there, still; the child may be racing around the room in waves of hyperness and making noises and not responding to a single word you say. You cannot know how much or what of your presence they are absorbing; you cannot assume that they are, just as you cannot presume that they are not.

Just as we cannot assume that, because we no longer abandon deformed infants in the wilds to the wolves and the jackals, that we have come so far from the times of the fifth-century Romans and the stern laws inscribed upon the Twelve Tables.

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  • http://www.rettdevil.com Kassiane

    Wow. Powerful writing, Kristina.

    I tried to write a response to the op ed that didn’t contain words that would make a sailor blush. It didn’t work. You just did it.

    As for ‘adorable’..not quite. Charlie is a handsome young man who is growing into his own with the guidance of Mom and Dad and teachers, just like all 9 year olds. Just being with him for a short time (lollypops for breakfast! woo!) was a priviledge.

    Wonderful. Just wonderful post…

  • http://http//:jacobs-journey.blogspot.com Harvest Mom

    Wow. You’ve hit on ALL the reasons that the statement I can least stand in reference to Jacob is “But he’s so cute”. The “he’s so cute” is annoying enough, but that “But” is just infuriating to me! Because of what it means about the the unspoken thought that PRECEEDED the spoken line.

  • http://spanglishlife.blogspot.com natalia

    I think the 1st rule could be changed to “Do something for the world’s most powerless people.”

    This would not leave out the poor, and it would not leave out Ashley and her ilk.

    And let’s face it, she has a lot of ilk. Apart from those already as -or nearly as- impaired as her, who already know what it’s like to be at the mercy of others’ convenience, any one of us “temporarily able-bodied” could get in a position where we were suddenly injured, in a coma, having locked-in-syndrome, etc. and no control over what gets done to us.

    PS: Very Good Article!!

    PS2: I know you like word origins here… Precious was originally supposed to mean VALUABLE, before it meant cute… In that sense, all children ought to be seen as precious, like we could say “human life is precious”.

  • http://spanglishlife.blogspot.com natalia

    PS3: obviously, not just children.
    But just in case it wasn’t clear.

  • hj

    The Two Singers. Reckless, arrogant, cruel. Self-hating narcissists both.

  • http://www.elisabethsmom.blogspot.com Elisabeth’s Mom

    Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it’s painful and life altering but nobody ever questions a parent about “barbaric” procedures to make corrections through surgery because this is what we expect from the medical profession.

    Like Ashley’s parents, I’ve been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can’t imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can’t imagine her lying on the floor or in a wheelchair as an adult because she’s too heavy to lift or transport into kyak or canoe or horse. I can’t imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.

    I don’t understand why is everyone against using medical breakthroughs for people if it will enhance their quality of life? As for using these same procedures so that parents can better assist their child, I don’t see anything wrong here either. Go ahead and talk about what is “ethical” and what is “dignity” after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is “ethical” and what is “dignity” after tightly binding your body in a burlap bag having to rely on others to take care of you.

    It’s easy when they are young, but what about when our kids are 30? It’s not like we’re experimenting on our kids. People are blowing this “ethics” and “dignity” out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont’ want them to see — on object of pity.

    Instead of people looking at our kid’s emerging abilities, the focus is alway what they can’t do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can’t do? This makes sense? Do we tell kids they can’t play baseball because when they are 4 they can’t hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.

    Here’s my analogy. Let’s say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn’t cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.

  • http://www.autismvox.com Kristina Chew, PhD

    “We need to work together instead of working against each other.”

    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—-

  • http://www.youtube.com/profile?user=christschool christschool

    I’m doing a 2 part series on Peter Singer. Below is part 1. Once Livevideo finishes downloading part 1, I will paste the link in the Youtube description. Livevideo has much better capability than youtube.

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

  • http://www.autismvox.com Kristina Chew, PhD

    That video was powerful, and terrifying. Thank you.

  • http://www.rettdevil.com Kassiane

    I am one of “your kids”.

    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.notdeadyet.org Stephen Drake

    Elizabeth’s Mom:

    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.

  • http://www.rettdevil.com Kassiane

    That’s just it.

    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.

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  • http://www.autismvox.com Kristina Chew, PhD

    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.

  • Jackie

    I think the way adults might call a Autistic child “precious” or “cute”. Is a way for them, without admitting it themselves, to say “I don’t understand how to deal with this child. I’ll call it precious and treat it like a child. While denying to myself I am the one who is being child-minded”

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