Dr. Alison Piepmeier has very graciously agreed to write this guest post. Thank you, Alison!
Alison Piepmeier directs the Women's and Gender Studies Program at the College of Charleston, where she is full professor of English, and she is a member of the Governing Council of the National Women's Studies Association. Her most recent book is Girl Zines: Making Media, Doing Feminism. She has recently been featured on ABC news for writing a lovely goodbye after facing a brain tumor for the past seven years.
Why Peter Singer is a poor guide for embracing human diversity
I've had irritated things to say about Peter Singer for some time (for instance, I've compared him to the increasingly greedy and soulless George Lucas). One of my main critiques of him is that he seems not to be interested in evidence. He makes claims about disability, and these claims are contradicted by the lived experiences of people with disabilities. He continues to make the same claims, which are then contradicted by more people with disabilities. Critiques of Singer's work are particularly relevant now, since MaterniT21 was put on the market less than a month ago. This maternal blood test diagnoses Down syndrome very early in a pregnancy, making it easier for the pregnancy to be terminated.
Jennifer Baker notes one excellent example of Singer's lack of respect for evidence, the conversation between Singer and Michael Bérubé, where Singer's claims about the lived experiences of people with Down syndrome are directly refuted by Jamie Bérubé's life. Singer apparently took these refutations as an exception, not a challenge
to his premise that people with Down syndrome should be viewed with low expectations. This despite the fact that high expectations have resulted in significant changes in the last thirty years: people with Down syndrome are now attending college, writing books, participating in cultural change efforts. It's as if Singer is unwilling to see the extent to which his understanding-indeed, our cultural understanding-of intellectual disabilities was/is wrong.
Another example: after a lengthy correspondence, Singer invited disability rights activist Harriet McBryde Johnson to speak at Princeton. The two of them engaged in a series of conversations, essentially about whether Johnson should have been killed at birth. Johnson's argument is no. Singer's isn't quite so clear.
His evidence, once again, seems specious. As an example of why parents should be able to kill disabled infants, he offers her the sad vision of a disabled child on the beach, unable to play. Here, he's saying, is evidence of a life not worth living. Johnson responds, "I expected something more sophisticated from a professional thinker," and she shares memories of her own childhood, as a child with a disability, playing on the beach. As Baker points out, "Facts really matter."
Cultural construction of stigma
Beyond facts, our interpretations really matter. Johnson asks him about race. One of the reasons he sees it as appropriate to kill babies with disabilities is because their lives are difficult and they are not first in line to be adopted. So what does he think about race? Babies of color are as challenging to adopt as babies with disabilities.
"It would be horrible," he says, "to see mixed race babies being killed because they can't be adopted, whereas white ones could be." What's the difference? Preferences based on race are unreasonable. Preferences based on ability are not. Why? To Singer, it's pretty simple: disability makes a person "worse off."
What Johnson is asking Singer to consider is the extent to which stigma and quality of life are culturally constructed. Singer is able to recognize that the stigma surrounding blackness in the US is based on stereotypes emerging from and supporting a history of oppression. That stigma doesn't say anything about inherent qualities in blackness; it says something about our racist society. He gets that. Indeed, I suspect he gets that there are no "inherent qualities in blackness" (although 19th c. philosophers would have heartily disagreed).
What he doesn't get is that the same is true for the stigma surrounding disability. Disability is socially constructed. The notion that the lives of people with disabilities are "worse off" is an example of social construction. He's viewing the lives of people with physical and intellectual disabilities through the lens of stigma, which seems to make completely ambiguous, pliable, contextual concepts seem absolute and true.
We have a great deal of evidence that such lenses often obscure and shape the world. As Bérubé explains, thirty years ago, people with Down syndrome were widely understood to be people who could never learn to read, to dress themselves, to speak. Now they go to college (at my college, for instance, they are attending typical classes and participating in the full range of college activities). This is a huge shift, and it's not that Down syndrome as a genetic condition has changed in thirty years. It's that our cultural understanding of it has changed, and that change has made a paradigm shift happen.
Disability as an example of embraceable human diversity
Activists and scholars like Johnson and Bérubé (along with many, many others) argue that the world needs to recognize and value human diversity, and that disability is another form of diversity that should be appreciated, even celebrated. Even more pointedly, other disability studies scholars note that disability is the most pervasive form of human diversity. As feminist philosopher Susan Wendell explains, "Unless we die suddenly, we are all disabled eventually." So we'd better start taking it seriously as a form of human diversity.
Our culture doesn't always provide good narratives about cultural diversity; as Baker notes, the "easy truths we assume" are often poor guides. When my daughter was born and I learned that she had Down syndrome, a series of narratives immediately kicked into action in my mind: "I'm going to have to quit my job! Has my life been destroyed? Am I going to love her even though she's pitiful? This story has suddenly become a tragedy, hasn't it?"
Singer might have said yes. He might have said that as a family we should get to decide whether or not this person continues to live, that her human status is liminal enough that society doesn't owe her anything. Fortunately, shortly after my daughter's birth I connected not with Singer but with feminist disability studies scholars and activists, and I learned that virtually every narrative in my mind was wrong. Inaccurate. I have a PhD and am a person who's been doing feminist scholarship for decades, but my beliefs about disability were profoundly skewed by our culture's stigma.
I now have a three year old who lives a life defined by play, by education and exploration, by curiosity and community (not to mention by some fabulous rock and roll drumming). Those in her world have learned that we have to keep raising our expectations, because she continues to meet and exceed them.
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