Bioethics Forum Essay
Taking People at Their Word
When I was a student, I loved to read Freud and Nietzsche and Marx. I was into what the great French philosopher Paul Ricoeur called “the hermeneutics of suspicion.” Sex, power, and money were at work everywhere. So were the psychological and social mechanisms that kept everybody else from seeing beneath the surface: “rationalization,” “denial,” and “false consciousness.”
When, almost fourteen years ago, I came to work at The Hastings Center, one of my first research projects investigated the critique of prenatal genetic testing that was being made by people with disabilities. People who were blind or relied on ventilators to breathe or wheel chairs to get around kept telling me things like, “The disabling trait that you’re focused on doesn’t actually negatively affect my life. What negatively affects my life are the dopey ideas – and the mistreatment that goes with them – that people like you have about what life is like with disabling traits.” The parents of children with atypical anatomies kept saying similar things: “The hardest thing about having a child with Down Syndrome or Spina Bifida or dwarfism is the way other people treat us; we love our child exactly as she is.”
I’m not proud to admit that when I first heard such claims, my unspoken response was, Sure that’s what they say, but the person making that claim is “in denial” or is “rationalizing.” They can’t allow themselves to speak the sad, dark truth beneath the sunny surface.
But then I started to notice how many people with disabilities say this sort of thing and also how clearly and eloquently they often say it. The more I listened, the harder it was to apply my hermeneutics of suspicion. If these people aren’t clear about who they are and what they want, then who is? I surely don’t think more clearly about my life than they do about theirs.
In addition to listening more carefully, something else helps explain why I could fairly quickly get over my initial reaction. The argument these people with disabilities were making was ultimately congenial with one of my own key ethical intuitions, namely, that we need to learn to let things be, to eschew technological intervention. These people with atypical anatomies were arguing against using technology to “fix” them and against using it to insure that fetuses with traits like theirs didn’t enter the world. Like people in the disability rights community, I love the idea of changing minds with words instead of changing bodies with technology.
More recently, however, beginning with my research project on surgeries to normalize the appearance of children with atypical anatomies, I started listening to a wide variety of people with atypical anatomies who wanted technological interventions. Among them were people with dwarfism who wanted limb-lengthening surgeries, deaf people who wanted cochlear implants, and people who wanted surgery to transition from the sex they were born with into the sex they say is natural for them.
Here it wasn’t “rationalization” and “denial” that leapt so quickly to mind, but “false consciousness.” Well, yes, these people say they want surgery to normalize their appearance, but really they’ve been duped by ugly and oppressive social forces beyond their awareness.
These people with atypical anatomies, however, were proceeding from an ethical intuition that I find less immediately congenial: namely, the intuition that one of the most significant things about animals like us is that we can creatively use technology to transform ourselves. We don’t need to learn to let our bodies be, we need to learn ever more creative ways to transform them.
Eventually, I had to ask: If I have an obligation to listen, and accord respect, to people who want to leave their atypical bodies alone, don’t I have an equally weighty obligation to listen, and accord respect, to people who want to transform their atypical bodies with technology? If I’m going to take people in one group at their word, then don’t I need to take those in the other at theirs? Just how helpful is the argument from “false consciousness”?
Fortunately for me, I had a chance recently to put that question to scholar, writer, and activist Alice Dreger. Without missing a beat, Alice said, “I’m starting to think ‘false consciousness’ is an oxymoron. All there is, is consciousness.”
I actually hadn’t quite noticed until that moment how crucially the idea of “false consciousness” depends on a rather robust notion of “true” consciousness. Make no mistake: Alice and Iare after some approximation of “true consciousness.” We do believe that critical thinking can help to illuminate what’s really going on. But we are – or at least, I am – also deeply suspicious of anyone who claims to be in possession of “true consciousness.”
Does that leave us with a despairing variety of relativism? Once we give up simplistic uses of the hermeneutics of suspicion, are we left with nothing but silence in the face of choices that seem ill conceived? No.
As the wonderful Canadian philosopher Charles Taylor has argued, we don’t show each other real respect by leaving each other alone. We show it by asking each other questions, engaging each other in dialogue. “You say you want to let your body be, but do you know what the technology could allow you to do?” Or, “You say you want to transform your body with technology, but have you thought about how your choice might affect others?”
So, at the beginning of the day, we show each other respect by engaging each other in dialogue. It’s good that some of the questions we ask each other will grow out of a hermeneutics of suspicion. But at the end of the day, we show respect by deferring to the truly informed decisions of competent persons. We take them at their word.
Erik Parens is senior research scholar at The Hastings Center.