Welcome to Illinois

On Michael Bérubé and Peter Singer

Posted in Ability, Attitudes to disability, Ethics, Learning disability by Matt at WelcometoIllinois on December 5, 2008

I have to confess to not knowing who Michael Bérubé and Peter Singer were until yesterday when I stumbled upon Bérubé’s account of his recent communication with Singer on the topic of the expected capabilities of people with Down’s syndrome.

Bérubé is (according to Wikipedia) the Paterno Family Professor in Literature at Pennsylvania State University, and the author of several books on cultural studies, disability rights, liberal politics, and debates in higher education. He also happens to have a son, called Jamie, who has Down’s syndrome, which has no doubt impacted his opinions towards disability without, it would appear, clouding his judgment.

Singer, meanwhile, is apparently an Australian philosopher, and the Ira W. DeCamp Professor of Bioethics at Princeton University, who specializes in applied ethics, approaching ethical issues from a secular preference utilitarian perspective.

Bérubé’s post describes communication between the two centered around Bérubé’s response to Singer’s characterization of the capabilities of people with Down syndrome.

According to Bérubé:

In his 1994 book, Rethinking Life and Death, Peter Singer famously claimed that “To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player”.

Bérubé also describes how Singer and fellow philosopher Jeff McMahan “believe that (to put it clumsily) cognitive capacity is a valid metric of moral status, so that (in McMahan’s example) if we agree that it is more consequential to kill a human being than to kill a squirrel, and if we don’t believe in stuff like “the soul” or “the divine spark” or “the ineffably human,” it follows that it is less wrong, all other things being equal, to kill someone with severe cognitive impairments than to kill you or me.”

If, like me, that perspective has got your hackles up, fear not because Bérubé is on hand to respond far more calmly and intelligently than I could hope to:

“I note that in the 1920s we were told that people with Down syndrome were incapable of learning to speak; in the 1970s, we were told that people with Down syndrome were incapable of learning how to read. OK, so now the rationale for seeing these people as somewhat less than human is their likely comprehension of Woody Allen films. Twenty years from now we’ll be hearing “sure, they get Woody Allen, but only his early comedies—they completely fail to appreciate the breakthrough of Interiors.” Surely you understand my sense that the goalposts are being moved around here in a rather arbitrary fashion.”

He writes.

“Who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors? Likewise, this past summer when I remarked to Jamie that time is so strange that nobody really understands it, that we can’t touch it or see it even though we watch the passing of every day, and that it only goes forward like an arrow, and Jamie replied, “except with Hermione’s Time-Turner in Harry Potter,” I was so stunned I nearly crashed the car. I take issue with your passage, then, not because I’m a sentimental fool or because I believe that one child’s surprising accomplishments suffice to win the argument, but because as we learn more about Down syndrome, we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.”

He adds.

“You’re looking for things people with Down syndrome can’t do, and I’m looking for things they can. We each have our reasons, of course. But I don’t accept the premise that cognitive capacity is a useful criterion for reading some people out of the human community, any more than you would accept the premise that we should grant rights to animals on the basis of whether humans think they do or don’t taste good with barbeque sauce.”

To put that last comment in perspective, Singer is a strong believer in animal rights.

It turns out that Bérubé has written a book, Life As We Know It: A Father, a Family, and an Exceptional Child, which is both a personal account of life with his son and an “investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of ‘disabled’ children”.

Needless to say, I’ve already ordered a copy.


2 Responses

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  1. Illinois Mom said, on December 8, 2008 at 6:21 am

    Great stuff! Will definitely order a copy for our literacy program library. Not sure how others feel, but lately it feels more like we are on a civil rights crusade than finding solutions for our kids. Truly, if people substituted any other race, religion, socio-economic class, etc., for the term Down syndrome, they would be rightly criticized for writing such trash about human beings.

    Thanks for highlighting the work of a champion!

  2. Life as we know it « Welcome to Illinois said, on January 21, 2009 at 2:47 pm

    […] was very interested when I discovered Bérubé and the fact that Life As We Know It includes both a personal account of the progress of […]

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