Plenary: The Journey from Normal: Parenting a Child with Down Syndrome
Michael Bérubé, Ph.D.
Session Presider: Maureen Perry-Jenkins, Ph.D., 2017 NCFR Program Chair
About the Session
- 139 - The Journey from Normal: Parenting a Child With Down Syndrome
By Michael Bérubé
- Welcome: Maureen Perry-Jenkins, Ph.D., 2017 NCFR Program Chair and session presider
- Welcome: Susan Silverberg Koerner, Ph.D., University of Illinois at Urbana-Champaign, Plenary Sponsor
- Welcome from NCFR President: William D. Allen, Ph.D., 2015-2017 NCFR President
- Introduction of Board, Editors, and NCFR Executive Director: William D. Allen, Ph.D.
- Induction of 2016 NCFR Fellows: Libby B. Blume, Ph.D.; Stephen T. Russell, Ph.D.; Adriana Umaña-Taylor, Ph.D.; Presenter: William D. Allen, NCFR Board President
- Plenary Presentation
Session sponsored by the University of Illinois at Urbana-Champaign
Michael Bérubé, Ph.D., is director of the Institute for the Arts and Humanities and Edwin Erle Sparks Professor of Literature at Pennsylvania State University.
His talk, building on his pair of books on the life of his son Jamie (Life as We Know It  and Life as Jamie Knows It ), will foreground the emotional challenges and rewards of having a child with Down syndrome — and the various support systems, social and familial, that helped his family along the way. When Jamie was born in 1991, Dr. Bérubé and his wife (Janet Lyon) were very much a typical academic couple — assistant professors with a precocious 5-year-old. Jamie’s arrival changed their sense of what it means to have a child; but more profoundly, his life changed their understanding of human norms, and led them to see Down syndrome not as some kind of family tragedy but merely as one of the many forms of ordinary intraspecies variation.
Dr. Bérubé's plenary session will take place Wednesday, Nov. 15, 2017, from 1:15-3:15 p.m. Eastern.
How families cope with raising children with intellectual disabilities
Why early intervention programs are critically important
How we can develop a more capacious and supple sense of what it means to be human
About the Presenter
Michael Bérubé is an Edwin Erle Sparks Professor of Literature and the director of the Institute for the Arts and Humanities (IAH) at Pennsylvania State University. He arrived at Penn State in 2001, after having taught at the University of Illinois at Urbana-Champaign for 12 years, and became IAH director in 2010. He also serves on the American Association of University Professors’ Committee on Academic Freedom and Tenure, and on the International Advisory Board of the Consortium of Humanities Centers and Institutes. In 2012 he was president of the Modern Language Association.
He is the author of 10 books to date, including 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, Vintage, 1998); and What’s Liberal About the Liberal Arts? Classroom Politics and “ Bias” in Higher Education (W. W. Norton, 2006). He is also the editor of The Aesthetics of Cultural Studies (Blackwell, 2004) and, with Cary Nelson, of Higher Education Under Fire: Politics, Economics, and the Crisis of the Humanities (Routledge, 1995).
In 2015 he published The Humanities, Higher Education, and Academic Freedom: Three Necessary Arguments, co-authored with Jennifer Ruth (Palgrave). His ninth book, The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, was published by NYU Press in early 2016; in October 2016, Beacon Press published Life as Jamie Knows It: An Exceptional Child Grows Up, which was written with extensive input from Jamie himself.
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.