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Peter Singer's Pillow Angel

Peter Singer is nothing if not predictable (and predictably awfully limited for someone taken as seriously as he is), but his Op-Ed in yesterday's New York Times newspaper (ok I've always wanted to use that great phrase from Jimmy Breslin) certainly contains material for reflection by exponents of Catholic social thought. "What matters to a severely disabled child isn't dignity," blurbed the Times in an accurate summary of Singer's brief essay on the case of Ashley X, the disabled 9 year old Seattle area girl who thanks to her parents had a hysterectomy two years ago so that she would not menstruate; had her breast buds removed; and received hormone treatments to minimize her growth. "Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families," concludes Singer in an essay which is, surprise!, wholly sympathetic to Ashley's parents and their lifestyle choices.

       The case has attracted great interest but I am not aware of any comparable frontal assault on a fundamental premise of Catholic social teaching such as offered by Singer, who deserves credit for articulating what others of less confontational natures surely also believe. And perhaps it is time to ask if "dignity" has not devolved into a mantra that only exposes its champions to further ridicule of this type? Singer is himself no more attuned to the manipulations of language than his targets. He apparently has no qualms with the "pillow angel" motif that is so dear to Ashley's parents and also fits nicely within the broader tropes of late-Victorian sentimentality that infect so many discourses on disability,  including if not especially as found in much Christian theologizing. For a powerful critique/witness against this enduring unhelpful tradition see the presentation by Kassiane Alexandra Sibley.

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I think the use of the word dignity is often quite problematic because, like "life" it is a stand in for a host of other values that are not self-articulating. In that sense, the use of the word dignity as often obfuscates as it clarifies. I find Ashley's case to be quite disturbing, not least because I can see, and can articulate, the contrary sides. What I think is lacking in the reactions I have seen that are quite derogatory towards her parents is the failure to credit them (the parents) with a deep reservoir of good will -- they, not we, have undertaken the rather herculean task of caring for their daughter as much as possible like she is just another one of their children, when she isn't. My cousin cared for a child in Ashley's condition until he died at the age of 7, trying as hard as possible to include him in family events, even though it was fairly evident that he had no true understanding of what was going on around him. It bankrupted her family and destroyed her marriage. I think you need a lot of hubris to start pointing fingers at someone so willing to make such a large sacrifice -- and it must be remembered that they undertook this treatment so that they can continue making that sacrifice for much longer than they otherwise might be able to. Ashley and her parents are a family unit, and Ashely is completely dependent on their ability to sustain what are usually a fragile set of conditions that enable someone to care for a completely disabled person in their home. I don't think you can ever evaluate Ashley's well-being or dignity without reference to the well-being of her parents, when her dignity is so enhanced by their love and commitment to her.

Thanks for bringing this up. I am no fan of Peter Singer but I reacted favorably to the piece you cite. However I think he missed the point about "dignity". Of course babies are not dignfied and I imagine one could have a dog or a cat that the term could well be more appropriate to. I know at least one dog who certainly has his dignified moments. But when people talk of human dignity they are talking, or at least ought to be, about the instrinsic "worth" of a human being's life. I think one can plausibly maintain that a human life qua human has a certain intrinsic worth. Dogs and cats may be more lovable than some of our human friends but they do not have the same intrinsic worth.

I am the parent of a severely disabled child which does not immunize me from hubris and does not even make me an expert on anything beyond my own disabled child. That experience does however make me attentive to issues such as raised in the Ashley case. But it's really the cultural historian in me that was most troubled by her parents' use of the 'Pillow Angel' motif as a means of containing this child in a diminished format the parents find most convenient. It is amazing how much we can discern of the needs and concerns of non-verbal, severely disabled human beings if we are truly present with them; it is even more shocking to discover how quickly judgments are made as to the limitations of other human beings, especially when those limitations justify actions that would otherwise be deemed ethically dubious.My overall theme is that once we get past the Peter Singers of the world we are still stuck with a highly sentimentalized Christian discourse on disability that should be scrubbed clean so we can start over and start by looking much harder at persons among us and ourselves.

As for "containing this child in a diminished format the parents find most convenient," I suppose we are all free to speculate as to whether the parents are being dishonest with the public (or with themselves) about their motives, but they state again and again, emphatically, that the "Ashley treatment" was intended to improve their daughter's "quality of life," not to make it more convenient for the caregivers. It seems to me considerably more difficult to make an ethical case against the various medical measures involved in the "treatment" if we take the parents at their word and look at the costs and benefits from Ashley's point of view. To take an example, I had a particularly strong reaction (and still do) to the removal of Ashley's breasts. But the parents tell us that large breasts run in the family, that they would be uncomfortable for someone who must spend her life lying down (and without the ability to change positions) or strapped into wheelchairs and other such devices. Removal of the breasts at Ashley's age was very minor surgery, and it will preclude the possibility of future medical conditions (fibrocystic growth and breast cancer) for which there is a family history. Adult women freely choose to have breast reduction surgery, which as far as I know is totally uncontroversial, and some healthy women at risk for breast cancer have preventive mastectomies. If there are ethical objections to that, I am unaware of it. Quite frankly I don't know how you perform the calculations of weighing simple surgical intervention now against potential medical problems and serious surgery later, but it seems clear to me that Ashley's parents and medical team did not take this step without very serious consideration.I wonder if many of us, and especially the advocates for the disabled, don't react to "the Ashely treatment" with horror because we imagine it being performed on ourselves AS WE ARE NOW, without coming close to putting ourselves mentally in Ashley's position. And how could we? She has not developed mentally past the age of three months.

Had we listened to much of what we heard from docs about the prospects for our son he'd be institutionalized by now. Parents of disabled children become consumers of narratives spun from a desperate need to explain what can't be known, which is most everything involving the human brain and its wiring. But I want to finally link this all again to "Pillow Angels" because it comes right out a tradition of 19th century sentimentality: see Little Women, Uncle Tom's Cabin and countless other texts and compare their treatment of women, persons of color etc. with contemporary treatments of the disabled. Today the cognitively disabled make up the one group which many feel quite confident in objectifying ("mental age of three months" etc) in authoritative language that promotes separation and control. A century ago 'Science' explained that racial groups were easily ranked according to skull measurements; only the ignorant would challenge such knowledge. I urge everyone to reflect on '"Pillow Angel" as rhetorical device. What kind of authority and control is expressed via that form of naming? Why are we so confident in our ability to nullify the subjectivity of another human being?

I have read Kassiane. But to watch her speak? This is a most profound experience. How important is this? Powerful.Elizabeth Kubler-Ross revolutionized oncology by letting doctors and nurses listen to cancer patients, especially young ones, describe what it was like to be dying and be treated by doctors who had no clue.I would like to hear Kassiane's take on Ashley. Do we know all we can about Ashley? What else is there? Certainly if we heard the doctors that Kassiane is flailing against, talk about autism, we might find their errors convincing.

Like I said above, I am very troubled by the prospect of "reshaping" the body of a disabled child for any reason, even good and responsible reasons. But one of the problems I have with "disability rights" as a movement is that the "disabled" more than any other group exist on a spectrum that is so wide it defies categorization, and thus, defies generic prescriptions for meeting their needs or advancing their interests. Just one example: most other distinct disadvantaged groups sought "equal" treatment, that is, the absence of prejudiced assumptions and treatment that limited advancement, and to the extent that affirmative action was sought it was and continues to be highly controversial, and sometimes illegal But the "equal" treatment model doesn't quite fit for the disabled, some of whom need and are affirmatively seeking enhanced social assistance, and without which they will clearly never be able to achieve that which they are capable of achieving. Not unless they come from exceptional or wealthy circumstances. And then, there are children like Ashley, and my cousin's son, and then there are people like Marlee Matlin. All disabled but not much alike. And I posit that we emphasize the Marlee Matlins of the world as being representative of the disabled generally, and thereby make it impossible to have an honest discussion about the Ashley's of the world. We don't really know what Ashley is thinking because she can't talk, so less intervention appears to be the most reasonable option. But I can't quite get to a place where her parents would be foreclosed by virtue of their manifestly superior knowledge of Ashley as an individual from arriving at a different conclusion. And I can't get to a place at all when they are pointed to as evil or acting for their own convenience. If their own conveniece were paramount Ashley would have moved to an institution long ago.

James,we've never met before, but we have a lot of mutual friends. I wanted to throw in a few comments from the perspective of someone who has been operating in the "trenches" regarding Singer and other less well-known but equally alarming colleagues.1. Based on my reading of Singer and my encounters with him, I can say he is much more aware than most of how language is distorted and mangled - and is much more deliberate in how he goes about it.2. There are some prominent bioethicists within the Catholic Church who come pretty close to Singer on a number of issues - although they use a different language than "Personhood" - look up Kevin O'Rourke sometime.3. I think most people are missing an important element of this debate. The article describing the bizarre series of medical procedures performed on Ashley was published in October and received little attention. The wave of public attention and debate occurred as a result of the publication of the parents' blog. Apparently, they were unhappy that no one was discussing the "Ashley Treatment." Their blog is a call to other parents to consider doing the same thing.In short, it was the *parents* who decided this would be a public and political debate over public policy rather than a private matter. That decision and the possible motivations for that decision should be part of the public discourse as well.BTW, I noticed that the parents' blog now links to the Singer essay and quotes him. I wonder how much they know about him?

Regarding the parents' publicity seeking: I am not sure it matters. When you are in their position, assuredly, you meet people like yourself and know that there are many others that you don't know, so it doesn't bother me that they are drawing attention to themselves and their circumstances. It's better than being invisible. And talking about how to assist the lives of those like Ashley and her caretakers is a service, even if you find their proposed solution wrong. I would rather be discomfited by the reality than comfortably ensconced with the delusion that those who take care of the disabled universally subscribe to the view, often expressed by those whose lives are not consumed by a similar undertaking, that they are in reality blessed by their predicament.

Thanks to all for comments: I'm relatively new to this though my longtime interest in Catholic 'difference' helped prepare me for shift to disability studies underway. Thanks to Stephen Drake (and thanks for work at Not Dead Yet) for making really important point about Catholics on the Singer side of aisle: there is quite a large story out there about medical ethicist/entrepreneurs and the protection packages they sell to Catholic hospitals etc. We really do need to examine all these issues in light of commodification of experience that shapes so much of disability politics. I knew we can never return to an unmediated 'radical empiricism' that will let us see what is, but it's not a bad ideal to keep in mind. What we really need is a William James to do a Varieties of Disabilities Experience.

I see I'm infamous *wry grin*.Here are a few problems that I see, besides the obvious medical problems.-The whole pillow angel thing. That's a name for a CAT not a CHILD. People who have read my blog know I go by the Rett DEVIL. A quick search on Rett ANGEL will show you why--Rett Syndrome is quite similar to the nonspecific brain difference Ashley has ('static encephalopathy' is like saying 'virus' or 'traumatic brain injury', says nothing about severity or symptoms other than where it lives; I know a girl with that dx who has my old team gymnastics leotard, for gymnastics). It's like sit around and cause little trouble, wait to die and collect halo. Um no. People just don't do that.-There is NO WAY of knowing Ashley's actual mental abilities. We have yet to develop a test that will tell us mental status or abilities in lieu of praxis (which Ashley seems to have serious problems with). For all we know she's a brilliant 9 year old with the worst motor planning on earth. But HEY! Say she has the mental status of a 3 year old and you dont need to do a....-COMMUNICATION ASSESSMENT! There are more ways to communicate than speech. There's text. Pictures. Eye gaze boards. Hitting switches. Screaming. She's certain to be able to express her needs and wishes in SOME way. Probably in more than one way if they'd done speech (which isn't always about speech), occupational therapy, and physical therapy. But it's easier to accept "will never develop", right? Then you can ignore DIGNITY.So NO ONE ASKED ASHLEY. That's a big problem, right there. She obviously is going to notice that she hurts in her tummy and where her breast buds were (incidentally, that's evidence of hypothalamic harmatoma, and I read way too many neurology texts) and that she stopped growing. But no one asked Ashley. And no one is explaining things to Ashley.As I recall Catholics are against removing the uterus as birth control (which is what this is, the sad truth is 90some percent of women with developmental disabilities are raped, especially when they aren't given communication tools. Like Ashley. And they're making it easier, not harder). Pills can stop menstruation just as easily and more safely than surgery if that's the issue, clearly they aren't concerned with early menopause or osteoporosis because those are guarantees now. But someone can rape her and give her a disease and totally get away with it because....no uterus. There's many things wrong with this on a fundamental level. And when does a person's body become their own? How 'able' does a person need to be to be allowed the natural process of growth and development?My parents would have jumped on this. I'm speech preserved Rett Syndrome (looks like autism with BAD fine motor skills and seizures) and I'm already the most 'portable' member of my family. Slippery slopes and all that.It'd be interesting to know where clergy stand. Where pro-life advocates stand. We know where the disability advocates stand or sit as the case may be.And I wonder where Jesus would stand.Now, Mr Fisher, you know why I'm the Rett Devil. Sometimes being an angel is just being an object.

Which is why every night when I dial up your blog and come up empty I say to Kristina, I miss the Devil. We eagerly await word of Sundance.