Rosemarie Garland-Thomson is Professor in the Department of Women’s Studies at Emory University. She was recently named one of 2009’s “50 Visionaries Who Are Changing Your World” by UTNE Reader. Her most recent book, Staring: How We Look captures the stimulating combination of symbolic, material and emotional factors that make staring so irresistible while endeavoring to shift the usual response to staring, shame, into an engaged self-consideration. In the original post below she looks at end-of-life issues and the health care debate.
Democracy thrives on polarized debates, theatrical performances that try to convince citizens about how to spend their dollars and place their votes. Statements get especially extravagant when we are discussing important policy issues that affect such sensitive personal issues as how we take care of each other when we are sick, vulnerable, hurt, or dying. Our recent debate about health care has flared especially intensely about end-of-life and life ending issues. That the inevitable outcome of life is death is a hard pill for us all to swallow. Health maintenance is a more comfortable and cheerful topic for us ever optimistic Americans than the uncompromising truth of our impending mortality.
One of the more vivid concepts to emerge from the health care debate is the provocative concept of pulling the plug on granny. The image of our granny shorn from life-sustaining sustenance, care, and support cuts both ways, calling up tender sympathy in some and tough pragmatism in others. A forlorn granny is code for the larger issue of how to make difficult decisions about not just distributing resources but who we think deserves those resources. In other words, the figure of granny lets us consider who we think of as deserving and valued fellow citizens, of who we want to be in our human community.
One way we frame this is through a cost-benefit analysis about what we imagine to be high or low quality of life. One reason we might pull the plug on granny is that the quality of her life seems low to those of us who are not old sick, or disabled. Moreover, we understand Granny to be using up more resources than she is contributing to society. People on both sides of the healthcare debate have brought forward the most extravagant example from history of where evaluating the quality of other people’s lives can lead. Between 1939 and 1942, the Nazi regime undertook an official euthanasia program. More recently questions of life quality and resource distribution sprang forward with the revelation that a number of grannies and other significantly disabled people at a hospital in New Orleans might have been euthanized during the Katrina disaster. These troubling occurrences, one then and the other now, remind us of the continuing communal struggle to decide what the Democratic premise of equality among citizens might actually mean.
The contemporary British version of our American granny is the physicist Stephen Hawking, whose imagined low quality of life based on his significant disability starkly contrasts with the value of his contribution as a brilliant scientist. Hawking is an exception, of course, to the usual way we consider the grannies of the world. Those who offered up Hawking has an example of a person whose plug might be pulled by a reformed healthcare system were surprised when Hawking claimed that the British healthcare system have provided him with the plugs he needed for a quality life through which he made his important contributions.
The late Harriet McBryde Johnson, who was a civil rights attorney and advocate for disability rights, made public a discussion about plug pulling with the Princeton ethicist Peter Singer, who has advocated euthanizing disabled newborns as a form of moral pragmatism when parents get a child they would prefer not to have. Johnson, who like Hawking lives with significant disabilities, put herself forward in the pages of the New York Times Magazine in 2003 to present the public with the story of how someone we imagine us having a very low quality of life in fact has a very high quality of life. In doing so, she offered us an opportunity to think through how we distribute resources and what a valuable life might be.
People like Stephen Hawking and Harriet McBryde Johnson–as well as our frail grannies, Katrina victims, and disabled German citizens under fascism– remind us that the conversation about who should and should not be in the world– to use Hannah Arendt’s phrase– is an urgent and confusing one today.
Today’s healthcare debate and it’s polarizing icons points to a less dramatic and often unnoticed contradiction between two opposing currents in American culture today. On the one hand is the endeavor to integrate people with disabilities into the public world by creating an accessible, barrier free material environment. On the other hand, is the medical mission to eliminate people with disabilities from the human community. What we might call the “integration initiative” arises from a rights-based understanding of disability and occurs through legislative and policy mandates such as the Americans with Disabilities Act of 1990 and 2009. In contrast, the “elimination initiative” arises from the idea that social improvement requires elimination of devalued human qualities and cons of people in the interest of reducing human suffering and increasing life quality and building a more desirable citizenry.
This contradiction in beliefs has filled the contemporary American public landscape with both fewer and more people with disabilities. For instance, wheelchair users now enter public spaces, transportation, employment, and commercial culture on a scale impossible before the legal mandates of the 1970s began to change the built environment. At the same time, medical technologies increasingly identify and eliminate through selective reproductive procedures potential wheelchair users born with traits such as spina bifida, which often requires wheelchair use for effective mobility. In another example, people with developmental and cognitive disabilities are now educated in integrated, mainstream educational settings which accommodate their educational needs rather than in segregated institutions. Simultaneously, medical technology routinely selects fetuses with Down syndrome or trisomy 21 in pregnancies to evaluate for termination.
The point is that not just what we do with granny’s plugs but how we imagine granny’s life reaches out beyond the nursing home room and into our shared world, affecting who we are and want to be as a human community.