Life As We Know It

American author Michael Berube’s memoir, Life As We Know It: A Father, a Family, and an Exceptional Child (1996), chronicles Berube's experience raising a child with Down Syndrome. According to The New York Times, Life As We Know It is "an astonishingly good book, important, literate, and ferociously articulated."

Michael Berube and Janet Lyon are both professors in the Department of English at Penn State University. They have one child, Nick, a highly intelligent boy who scored among the top percentiles in nationwide intelligence tests. At the age of thirty-six, Janet becomes pregnant a second time. In many cases, a pregnant woman undergoes amniocentesis, a test of the amniotic fluid that reveals chromosomal abnormalities, particularly Down syndrome. Named after its discoverer J. Langdon Down in 1866, Down syndrome, caused by the existence of an extra chromosome, results in intellectual disability and distinctive facial features. Many parents, upon learning that their unborn child will have Down syndrome, choose to abort the pregnancy. In Janet's case, she opts not to undergo amniocentesis because, at her age, an amnio-related miscarriage is just as likely as having a child with Down syndrome. Moreover, the doctors tell her and her husband that a sonogram would reveal almost any serious birth defect or disorder except for Down syndrome.

In September of 1991, Janet goes into labor. Her labor is short but difficult, and when she delivers her son, Jamie, into the world, Michael immediately believes the baby is stillborn. The child is motionless with purple skin, suffering from a lack of oxygen due to having its umbilical cord wrapped around its neck. The obstetric nurses immediately administer oxygen to Jamie, eventually rousing him. When they do, the nurses remark that Jamie "looks Downsy around the eyes."



Immediately, Michael and Janet's professional lives and ambitions are suspended, as they are required to devote every waking hour to keeping baby Jamie fed and alive. Jamie suffers a number of health and developmental problems aside from Down syndrome and can only be fed through a nasal tube. Desperate for anything that might lighten the grim situation the family faces, Michael and Janet compete with one another to see who gets Jamie to keep the most food down without spitting it up. They follow an exceedingly tight schedule, without which they might lose themselves in a pit of despair. The first six months, the author writes, are "a thrash."

"We can handle this together," Janet tells Michael. "This is not a stopper. We can handle this."

And they do handle it. From a vantage point four years past Jamie's birth date, Michael writes about his experience raising a child with Down syndrome. His approach is highly philosophical. He writes that his new son "has no idea what a busy intersection he's landed in," referring to the sociopolitical firestorms surrounding abortion and genetics. Despite the fact that Michael is grateful for having Jamie in his life, he doesn't seek to judge others who might choose to abort a fetus found to have Down syndrome. He does, however, wish to challenge people's thinking on these issues, in an effort for society to ''determine what kind of 'individuality' we will value, on what terms, and why.''



For Micheal’s part, he challenges his own personal feelings about Jamie because he knows that the vast majority of citizens and decision-makers will never have a child with Down syndrome, and thus, they will see a child like Jamie less as a boy and more as a category. He wonders what obligations society has to devote public funds and taxpayer-supported research for a condition that, on average, never allows the patient to progress past the IQ of an eight-year-old. At the same time, he wonders, doesn't society have a responsibility to improve the quality of life of its most vulnerable members? Are patients with Down syndrome not permitted the same rights of human citizenship?

To answer these questions, he looks to the philosophies of Wittgenstein and Foucault, as well as to broad biological ideas like Darwinism and eugenics. This, in turn, leads to a discussion about when life truly begins. Does it begin at conception, as strictly pro-life adherents believe? Does it start at the cell division stage? Or, in a question that's most germane to the author's specific situation, does it start before or after "chromosomal nondisjunction," the defective process that results in chromosome-related ailments like Down syndrome? The author doesn't know the answer to these questions but strongly believes there is value in asking them.

Along the way, Michael relates various milestones in Jamie's development, such as learning to walk at age two, learning to sound out the letter "L" the same year, and in the following year when Jamie is well enough to attend daycare alongside children who do not suffer developmental disorders. Michael is largely upbeat about Jamie and the prospects of other children with Down syndrome.



His greatest fear, however, is that America will become a society "that combines eugenics with enforced fiscal austerity." To avoid that, he writes, it will take more than sentimental testimonies from fathers like him. It will take Americans asking themselves the same tough questions he asks himself throughout Life as We Know It.