Paul Steven Miller

Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities

The relationship between the medical and disability communities is complex and is influenced by historical, social, and cultural factors. Although clinicians, health-care researchers, and people with disabilities all work from the standpoint of the best interest of disabled individuals, the notion of what actually is “best” is often understood quite differently among these constituencies. Eugenics campaigns, legal restrictions on reproductive and other freedoms, and prenatal testing recommendations predicated on the lesser worth of persons with disabilities have all contributed toward the historic trauma experienced by the disability community, particularly with respect to medical genetics. One premise of personalized medicine is that different individuals require different solutions. Disabled persons’ experiences are a reminder that these solutions can be best realized by maintaining awareness and sensitivity in a complex ethical and moral terrain. Geneticists should recognize that their research may have implications for those with disabilities; they should recognize the impact of the historical trauma of the eugenics movement, and seek to involve people with disabilities in discussions about policies that affect them. Dialogue can be messy and uncomfortable, but it is the only way to avoid the mistakes of the past and to ensure a more equitable, and healthful, future.Genet Med 2013:15(2):95–102

'A Philosophy of Handicap': The Origins of Randolph Bourne's Radicalism

Scholars have viewed early twentieth century American social critic, Randolph Bourne, through a variety of lenses, from a displaced intellectual to a champion of modern individualism. None, however, identify handicap as the source of his outlook. Longmore and Miller reconsider the importance of handicap in the life and work of Bourne. In doing so, the authors argue that Bourne’s experience with handicap, evidenced by his torturous and conflicted struggle to gain confidence and self-respect amidst widespread discrimination and prejudice, shaped his radical outlook toward social transformation. Furthermore, Longmore and Miller maintain that a more complete understanding of modernity requires insight into the role that handicap has played in America’s modern transformation.