Disability and Democracy
Paterno Family Professor in Literature, Penn State University
Michael Bérubé, Paterno Family Professor in Literature at Penn State University, is the author of four books to date: Marginal Forces/Cultural Centers: Tolson, Pynchon, and the Politics of the Canon (Cornell University Press, 1992); Public Access: Literary Theory and American Cultural Politics (Verso, 1994); Life As We Know It: A Father, A Family, and an Exceptional Child (Pantheon, 1996; paper edition, Vintage, 1998); and The Employment of English: Theory, Jobs, and the Future of Literary Studies (New York University Press, 1998). He is also the editor, with Cary Nelson, of Higher Education Under Fire: Politics, Economics, and the Crisis of the Humanities (Routledge, 1995). He has written numerous essays on Down syndrome, and edits "Cultural Front," a book series published by NYU Press which includes work in disability studies by Simi Linton and Lennard Davis. Life As We Know It was a New York Times Notable Book of the Year for 1996 and was chosen as one of the best books of the year (on a list of seven) by Maureen Corrigan of National Public Radio.
Disability and Democracy
In this talk I will explore fully the implications of thinking of disability rights as civil rights and I'll ask why relatively few Americans, and very few Supreme Court justices, have so far been willing to entertain the implications of disability law as a form of civil rights law whose domain is potentially universal. I will reference (and do my best to describe) my son James, born in 1991 with Down syndrome, and how his progress through primary school has been facilitated by the Individuals with Disabilities Education Act of 1975; I will do so not only to establish what a remarkable and surprising child he is, but also to show that disability law can be understood in terms of "capability rights" that equip U.S. citizens to make the most of their other substantive rights as citizens. I will therefore situate disability law in the context of current debates over what philosopher Nancy Fraser has termed "the politics of redistribution" (which involve taxation, economics, social goods and services) and "the politics of recognition" (which involve questions of cultural identity, and have usually been associated with race and ethnicity), in order to suggest that disability legislation can form the basis for a pragmatic universalism that insists on the inclusion of all citizens, to the fullest extent possible, in deliberations over the content and the purpose of democracy.