Disability in Twentieth-Century German Culture

8. German/American Bodies Politic: A Look at Some Current Biocultural Debates

CHAPTER 8 • German/American Bodies Politic: A Look at Some Current Biocultural Debates During the week of September 18–24, 2003, Berlin became the “City of 1,000 Questions.” A visitor at that time might have been surprised to see large projections on the city’s most prominent buildings with questions such as: “Where is the gene going?” “What if my child wants optimized parents?” “Does disability begin with the wrong hair color?” “Is there ‘valueless’ life?”1 That week the curious visitor would have discovered an extensive program of lectures, discussions, theater performances, ‹lm screenings, and television specials about current bioethical issues arranged by Aktion Mensch (Campaign Human Being), the largest German advocacy organization for people with disabilities. This event marked the culmination of the organization’s year-long “1,000 Questions Project,” which sought to encourage broad citizen participation in bioethical debates by creating a Web site where the public could ask questions, make comments, engage in dialogue, and ‹nd information about these issues. During the year more than 500,000 people visited the site, which is still in operation, and 8,500 questions were posted along with 35,000 comments. The project is documented in a book entitled Was wollen wir, wenn alles möglich ist? Fragen zur Bioethik (What Do We Want if Everything Is Possible? Questions about Bioethics, 2003). Categories of questions include pre-implantation and prenatal diagnosis , eugenics and selection, disability, cloning, gene technology and economic issues, experimentation on human subjects, embryonic stem cell research, the promises and pitfalls of modern medicine, euthanasia, and physician-assisted suicide. As by far the largest documentation of a citizens ’ forum on bioethical issues in Germany, the book offers unique insights into some of the public’s opinions, hopes, and fears about these developments in medicine and biotechnology. And in 2005 a play based on these questions, entitled Wohin Gen? (Where Is the Gene Going?), was performed at a dozen theaters, including the Maxim Gorky Theater in Berlin. The broad resonance this project has found in Germany testi‹es to a widespread desire for serious and substantial public re›ection on these 307 bioethical questions. This is not surprising, of course, for at the most basic level these are issues of life and death that touch the lives of everyone in one way or another. The national scope of this debate and the amount of resources invested in it are quite striking, however, to this American observer. In the United States, public interest in these questions is undoubtedly just as high, but there is no comparable effort to encourage serious re›ection on them among broad groups within the population. Rather, debates in the United States tend to remain con‹ned within particular groups—the intellectuals, the policymakers, the activists, and so forth—or to be sensationalized in the mass media, as in the recent Terry Schiavo case. Be all that as it may, the large amount of public interest in these matters corresponds to a signi‹cant interdisciplinary intellectual development , which at the moment is being more explicitly formulated in the United States and Great Britain than in Germany: the turn toward the “biocultural.” Recently posited by a U.S. scholar, Lennard Davis, as a “prime area of cultural and theoretical analysis,” the biocultural can be understood as comprising all the ‹elds that are concerned with “the body in its social, political, cultural, and scienti‹c aspects” and speci‹cally study what happens when the “human intersects with the technological” in the twenty-‹rst century.2 Notable in this area are the 308 • Disability in Twentieth-Century German Culture Fig. 30. “London allows the selection of embryos. Questionable?” Poster from the 1,000 Questions Project. (Courtesy of Aktion Mensch.) intensifying dialogues among scientists, medical practitioners, and intellectuals from such humanities ‹elds as literature, philosophy, disability studies, and cultural studies. Within these biocultural debates, ethical questions have assumed a particularly central place as medical technology becomes ever more powerful and the far-reaching, even species-transforming implications of new scienti‹c discoveries become more apparent. Scholars in disability studies are bringing out the centrality of sociocultural attitudes toward disability and disabled people with regard to these bioethical issues. Indeed, one of the organizers of the 1,000 Questions Project asserted that all bioethical debates revolve around concepts of “illness,” “disability,” and “suffering” that are contrasted with concepts of “health,” “normalcy,” and “happiness.”3 The many cultural...