Are disability lives not worth living? The long history of "abled" voices has said, and continues to say "no"--a "no" that has been complicated by pre-natal testing and divisive political rhetoric about the nature of what a qualified life really is. In 2005 the Terri Schiavo case demonstrated to disability rights activists that when it comes to protecting disability life, conservatives had more empathy and courage than neo-liberal Democrats (with the notable exception of the Rev. Jesse Jackson).
The very idea that a disabled life is not a life at all depends both on the medical appropriation of curative utility (life with illness only possesses value in relation to its amelioration) and simple metaphor (disability understood as a ruined identity, see Erving Goffman). The dichotomies of spoiled identity have a long history on both sides of the Atlantic--eugenics, forced sterilizations, the "ugly laws", institutionalization, and the Nazi "T4" mass murder of adults and children with disabilities. The pattern is one of distillation: disability, (post industrial revolution) is broadly conceived--has been conceived as economically unviable, hence lacking all capacity for the pursuit of happiness in the world of econo-biography.
The darker version of this is the resentment of social welfare (Hitler famously depicted people with disabilities as "useless eaters"). The utilitarian (Benthamite) position (Peter Singer) holds that the greater good of society must trump the needs of a minority in pain--"good" is understood as the potential for achieving pleasure. The Benthamite pleasure principle subborns life to economic life and forgoes the question of what constitutes individual autonomy when imagined outside of industrial labor. In turn it's the right of the majority class, the "duty" of the majority class to debate the probable happiness potential and index of the minority. Many disability rights activists and scholars have pointed out the inevitable connection of Jeremy Bentham's ideas (and Singer's fealty to same) as the foundational principles of Nazism. There is truth to this because eugenics was driven by the principles of Bentham.)
The 21st century extension of disability as a cathexis of the utilitarian body and the medical model of physicality (that abnormality only has value in relation to its likelihood of cure) is now intensified by pre-natal testing. Mr. Singer would counsel parents to abort a fetus if it's future birth would result in a child without arms and legs. In his view that child would have no likelihood of happiness and (more sinister of course) such a child would impede the greater happiness of society. Singer is no scholar of economies of scale or of their pre-history. The idea that a legless man might be a great singer or poet demands an appreciation of proto-industrial village life: the majority history of human kind. But enough of Singer.
A friend wrote me recently. She's a young writer and a new mother of a little girl with a disability. She wrote because she's experienced the insensitivity of her academic colleagues and friends who have opined that they couldn't imagine raising a child with an intellectual or developmental disability. My friend has been shocked by the thuggish candor of these remarks. And by turn of the imaginative poverty of the conceptualization of a challenged life as no life at all. This is the marriage of utilitarian philosophy (absorbed through capitalism's ubiquitous social rhetoric) and the medical model of disability which holds that physical difference without the prospect of cure is not worth enduring. We are living in creepy and reactionary times. And though I've been a life long liberal, I applauded the efforts of former Florida governor Jeb Bush to save the unimaginable life of Terri Schiavo. I've never felt any ambiguity about that. Perhaps my lifetime of nearly incomprehensible difficulty to live and stand among the able bodied has given me a strange capacity for steepened joy. Not an easy joy. Not a hot rod, drive your car fast joy, It's the joy of living beautifully in the solitudes of challenge--something your average doctor or utilitarian philosopher can't imagine because they don't understand the vitality of pain.
Steve, as I read paragraphs 1 thru 4, I was thinking, "yes, yes, this is exactly what I've been thinking about... these are the dark sides of culture I've run up against..." Hah! Thank you for writing this. I have more to say, but all for now.
Posted by: Heather | March 25, 2012 at 10:46 PM