When literature and cultural studies professor Michael Bérubé's son James was born in 1991, he was diagnosed with Down Syndrome. Negotiating various medical, social, and educational environments and the identities each assigns their son, Bérubé and Janet Lyon (his wife, a literature professor and former cardiac-ICU nurse), become effective advocates for Jamie and embark on a course of questions about the social systems that produce disabled identities and administer to those human differences termed significant ones. Bérubé engages these questions with a mixture of family experience (his own, and that of other families with disabilities), historical research, critical theory, and sophisticated critical analysis.


This book is both a memoir of one family's development through the birth of a disabled child and a window on how many families negotiate the competing demands of work and family life, a juggling act that often includes the exigencies of disability and or chronic/catastrophic illness. Life as We Know It is also a powerful analysis of the construction of intellectual disability in contemporary America culture and its historical development.

Bérubé examines language and terminology (the quite recent use, for example, of "mongoloid idiot" as a diagnosis rather than an epithet) and its relationship to social policy; varieties of prenatal and childhood testing as producers of the categories "normal" and "abnormal, " prenatal and neonatal medical technology; philosophical debates about personhood, disability, eugenics, and healthcare rationing; and many other cultural practices that produce disability as a category of human variation.

Equally readable and fluent as a memoir and as a scholarly analysis of contemporary culture, Bérubé's book embodies critical theory at its very best: writing with the power to change daily lives (and not just the lives of academics) in significant and positive ways.

Often assigned in disability studies courses, Life as We Know It would be an excellent addition to medical school curricula focused on social medicine, ethics, diversity, and/or the doctor-patient relationship.

It's a book that friends give to new parents of children with Down syndrome, for whom it functions as a groundbreaking form of survival guide. By positioning Jamie's story within a larger web of cultural meaning-making that assigns differential value and social power to human bodies and minds, Bérubé makes this a book significant to any reader.



Vintage Books/Random House

Place Published

New York



Page Count