Narrating genetic disabilities: social constructs, medical treatment, and public policy.

ABSTRACT: The article compares three memoirs of genetically based disability: Lisa Roney's sweet, invisible body, Georgina Kleege's Sight Unseen, and Alice Wexler's Mapping Fate. The essay explores the tension between the narrow and the broad construction of disability, as demonstrated by the 1999 Supreme Court rulings on the ADA and as experienced by these three memoirists. It concludes that the approach of narrative bioethics, as exemplified by such a study of disability and illness narratives, can offer the medical and public policy community a valuable alternative perspective on genetic disability not as an incapacity, but as a set of social relations and practices. "The theoretical bind is that deconstructing oppressive categories can neutralize the effects of real differences." --Rosemary Garland Thompson(1) One semester, members of the senior seminar I was teaching in the English Department were reading John Wyndham's 1954 science fiction novel, The Crysalids.(2) In that novel, the few physically intact survivors of a nuclear war embraced a harsh religion enforcing a biologically and genetically restrictive definition of humanity. Wooden panels bearing a new Ten Commandments, governing not moral but reproductive behavior, decorate their homes: ONLY THE IMAGE OF GOD IS MAN KEEP PURE THE STOCK OF THE LORD BLESSED IS THE NORM IN PURITY IS OUR SALVATION WATCH THOU FOR THE MUTANT! THE NORM IS THE WILL OF GOD REPRODUCTION IS THE ONLY HOLY PRODUCTION(3) Wyndham's protagonist sees these religious placards every day in his house. He learns first that they apply to his friend Sophie. Born with six toes on each foot, she is cast out by this society desperate to guard the boundaries of `the human.' Then he realizes that they also apply to himself, for this young boy hides his own difference: the `gift' of telepathy. The novel follows his journey out from his repressive society into another, freer world, where eugenic restrictions are replaced with the deliberate genetic enhancement of human abilities. As the representative of that New World puts it, "The essential quality of life is living; the essential quality of living is change; change is evolution: and we are part of it."(4) When I asked my students for their responses to Wyndham's novel, they moved from the realm of literature to that of medicine and public policy, discussing contemporary attempts to use genetic knowledge to avoid the birth of children with genetically-based illnesses or disabilities. Michele exclaimed, "What worries me is that we don't know what we lose if we just decide to get rid of everyone with genetically-linked diseases. Where does that kind of thing end: what if we decide we only want babies with blue eyes and blonde hair?" Jamie immediately responded: "I understand what you're arguing, but I have diabetes in my family. I think if we can find a way to stop one child from suffering the pain of diabetes, we should do so." One useful way of understanding this brief conversation from my English class is to recognize that both the meaning of such questions as well as our responses to them depend on the narratives in which they are embedded. Wyndham frames his questions about genetics and disability in relation to modern medicine's precursor narrative, religion. To the people of The Crysalids, disability is seen as the mark of evil, the sign of a broken commandment. Positioning its treatment of disability, genetics, and negative and positive eugenics in relation to a society and social policy suffused by a harsh and unforgiving religiosity, Wyndham's novel paints a vision of a postapocalyptic world in which those with genetic differences are cast out of society in order to maintain and improve the 'health' of the human race. The narrative he gives us reflects his context: the immediate aftermath of World War II, poised between the appalling memory of Nazi eugenics and the immanent horrors of teratogenic nuclear war. …