Life as They Know It Now

Fans of Michael Bérubé’s book about his son Jamie, who was born with Down syndrome, might be surprised to realize it’s been 20 years since the publication of Life as We Know It: A Father, a Family and an Exceptional Child. Of course, kids grow up fast, and Jamie is no exception. Just 4 years old in Bérubé’s first book about him, Jamie is an adult now. So Bérubé, the Edwin Erle Sparks Professor of Literature and director of the Institute for the Arts and Humanities at Pennsylvania State University, thought it time to pen a new installment of his -- their -- life story. Life as Jamie Knows It: An Exceptional Child Grows Up was published this month by Beacon Press.

Part memoir, part biography, part treatise on disability and part plea for a more inclusive society, the book most often reads as a story of profound friendship. Bérubé and Jamie are companions who tease, protect and motivate one another. Unsurprisingly, the book already has received positive reviews -- especially from Jamie, who recently accompanied his father on a short book tour.

How does Jamie feel about his renewed celebrity status? “I really like the book,” he said in an interview. “These are memories in my heart and my soul.” Who should read it? “College students, everybody in town and all over the place -- worldwide.”

Bérubé said in a separate interview that his son was “very ready for prime time,” and particularly eager for Penn State students -- the constituency he seems to care most about these days -- to read Life. “Over the past couple of weeks he has been practically bursting with suggestions for writing about ‘another thing that is not in the book,’” Bérubé added.

Yet Life is hardly short on anecdotes. A number revolve around Jamie’s frequent travels with Bérubé, which they initiated in Jamie’s teens to help foster his independence. Some stories are funny -- such as when Jamie mischievously left a more than $60 tip on Bérubé’s inexpensive lunch bill. Others are poignant -- tears welled in Bérubé’s eyes when he realized that Jamie, with some phonetic difficulty, was comparing the architecture of Denver International Airport to that of the Sydney Opera House, for example. “I did not see that one coming,” Bérubé says. (Then again, Jamie loves atlases and maps, from which, along with memory, he often makes long lists of state counties and international cites.)

Other moments are “watershed,” in Bérubé’s terms, such as when Jamie insisted that Bérubé sleep in the airport terminal while he awaited the arrival of a late-night flight. Jamie was, in that moment, “capable, for the first time, of taking care of me,” Bérubé says.

Another watershed moment? Jamie’s request, at 20, that he live “independently,” meaning traveling around New York City, where the family often spends time, by himself. While Bérubé’s knee-jerk reaction was “no,” he and Jamie worked over time toward that goal -- first with “tailed” trips to the corner grocer and -- eventually -- to Yankee Stadium and beyond with a cousin who also has a disability.

Most of the anecdotes are purposefully gleaned from Jamie’s adolescence, and writing about a teen or adult -- as opposed to a small child -- presents challenges. For one, privacy concerns emerge; Bérubé says he and Jamie decided that his romantic interests were off-limits, beyond this: “Like billions of other people, Jamie would like a life partner, a companion, who loves him and wants to spend her life with him.”

Still, Jamie is generous in what he’s willing to reveal, including what his father calls the “most difficult transition of his life,” his older brother Nick’s departure for college. Bérubé says that for months Jamie insisted he wasn’t sad, but finally he broke down on Nick’s birthday, when he thought his brother would be coming home to celebrate.

Trying to explain how to cope with grief, Bérubé says he aimed for a visual: joy and sadness were like waves at the beach, which “come knock you down and tumble you around, and then you get up and they’re all gone.”

Rather than be stilled by the image, however, Jamie saw the bigger picture. “There will be more waves,” he said glumly.

“Shit,” Bérubé remembers thinking. “It didn’t take very long for him to figure that out, now, did it?”

Jamie’s struggle to find work after age 21, when he aged out of key educational and social services, is also difficult -- particularly for his father. A lifelong lover of oceans and, especially, sharks, Jamie said he wanted to be a marine biologist. Scaling back a bit, he then wanted to become a marine biologist’s helper. But with no aquarium in landlocked State College, Jamie had to try a variety of different jobs, including dishwasher, before he settled into something at which he excelled, due to his affinity for lists: cataloging information and tracking inventory and sales with the Penn State Press.

There are also major triumphs. He overcame a bad experience with water to love swimming, eventually becoming a Special Olympian at 17. Bérubé says Jamie beat his personal best time by 10 seconds during his first meet, after he looked around during the race and realized he was trailing. “Who knew this personality trait was in the cards?” Bérubé said of Jamie’s emergent competitiveness. Side note: Jamie also excelled at track and field and enjoys a host of other sports, including golf. (Asked what he loves about competition, he told Inside Higher Ed, “Winning the gold, actually.”)

Bérubé says he was warned that it’s much easier to write about children with intellectual disabilities, and that adults are “another thing entirely: any number of people -- though I have not made a list of their names -- who coo solicitously over a toddler with Down syndrome might find themselves recoiling, either from awkwardness or from outright revulsion, from the adult with Down syndrome who sits down next to them on the bus.”

His response to such perceptions is that while Jamie is no longer little, he’s still “cute,” albeit in ways previously unimagined. “Sometimes it is a matter of realizing that our Jamie can be witty and observant, even incisively so; sometimes it is a matter of understanding how dramatically his own self-understanding has deepened as he’s grown,” Bérubé says.

And this speaks to what might be Bérubé’s overall message in Life: that while he and his wife, Janet, sought solace from parents of older children with disabilities when Jamie was young, they’re now ready to return the favor. “Your mileage may vary, but our journey has been more complex and wonderful than we could have dreamed.”

He continues, “We are honest about the challenges involved in raising children with disabilities, and we respect the decisions of prospective parents who, for whatever reasons, come to the conclusion that this journey is not for them. But I hope that even though some of Jamie’s story must remain private, he and I can do a public service by describing his life.”

‘An Adventure in Lifelong Learning’

Interspersed throughout the stories and concentrated at the end of the book are Bérubé’s musings on themes from politics to the meaning of life, through a disability studies lens. Bérubé argues for more social supports for those with disabilities and takes aim at bioethical arguments that in his view construe disability as a life-threatening disease. He focuses on the work of Jonathan Glover, professor of ethics at King’s College London.

“Are we racing to ‘cure’ autism because it is like cancer?” Bérubé asks. “Do we want to ‘defeat’ Down syndrome the way we want to ‘defeat’ cancer? Glover argues carefully against many of the ugly attitudes that would stigmatize or seek to eliminate people with disabilities, but the idea that disability is best thought of as analogous to cancer cannot be called an ‘attractive’ attitude.”

Bérubé says he sometimes teaches Glover not because Glover is a hard-line proponent of “designer babies,” but rather because his voice is one of the most moderate in such debates. Yet even subtle arguments in favor of a “minimum level” of flourishing for unborn babies lack what Bérubé -- borrowing a Buddhist notion and a term coined elsewhere -- calls “an openness to the unbidden.” It’s the unbidden experience of Jamie’s life as he knows it, for example, and the unbidden humanity he’s fostered in others.

Bioethics “is much too important to be left to bioethicists,” Bérubé says, making another “blunt” declaration: “I have become convinced that societies that incorporate and accommodate people with intellectual disabilities are better than societies that exclude, ostracize and seek to eliminate people with intellectual and physical disabilities.”

Bérubé remembers one undergraduate class in which he taught the concept of the “medical boundary” for genetic interventions -- that they are ethically OK as a means of restoring someone to a baseline sense of normal but not for enhancing abilities -- and says he was struck that students tended to agree with it. “I find this curious,” he says he told his students. “For 10 weeks in this course you’ve challenged and historicized the idea of ‘normal.’ You’ve learned how the idea of the ‘normal’ has served as a primary tool of oppression not only for people with physical and intellectual disabilities but also for gay, lesbian, bi and trans populations. And suddenly now you want it back? Seriously?”

He concludes that instead of “trying to come up with reasons not to treat each other as equals,” people should treat those with intellectual disabilities, “mild to severe, as if they are people who matter, people worthy of attention, support and care. And I think maybe it would be a good idea to try to create societies here, there and everywhere, in which all humans, no matter what their individual characteristics, can flourish to the greatest extent possible.”

You never know, Bérubé says. “We might just find out that people with intellectual disabilities have something to teach their fellow human beings about being humans. I know it sounds unlikely. I might even sound impossible. But I said maybe.”

Glover said via email that he hasn’t read either of Bérubé’s books about Jamie, in part because he’s still grieving the death of his own daughter with Down syndrome many years ago. But having an adult son with schizophrenia, he said, he’s spent years writing books against what he calls the “ugly attitudes” toward people with disabilities. Cautioning against the quick summation of his complex arguments on bioethics, Glover urged a close reading of his work and said, “I sometimes think that, in the unlikely event of there being a God, when I meet him I will tell him that I would anyway have cared about people with disabilities, without him forcing me to pay attention to them in the way he has.”

Glover added, “There are some conditions whose status is (rightly) much disputed. These include Down syndrome and autism. Are they disorders that, in a medically ideal world, would be cured? Or are they ‘neurodiversity’ that doesn’t need ‘curing’? These are very difficult questions, and so I am not surprised that Bérubé may have different views from me on some of them.”

Bérubé also criticizes (though more dismissively) James Watson, co-discoverer of DNA, who has publicly questioned the place of children with disabilities in a world with genetic testing. Glover noted that Watson has a son with schizophrenia, and that he’s publicly admitted that’s had a profound impact on his life.

Personal narratives have become an important part of the field of disability studies, which has grown greatly since 1996. But all identity studies face some criticism that scholars may lack objectivity. Bérubé argues in the Life that personal interest in a field can be a precondition for reliable knowledge about it and that parents shouldn’t feel “too invested” to enter relevant debates.

Bérubé recalled this week a scholarly workshop on rhetoric and disability he once attended in which scholars were surprised that most everyone had a personal connection to the topic. He remembered laughing and saying that there was a workshop on rhetoric and democracy going on down the hall but that no one in it was saying, “I’m here because my sister once lived in a democracy” or “My uncle lost his democracy to an oligarchy.”

In other words, he said, having Jamie and watching him grow up “taught me more than I ever thought I would know about people with Down syndrome, and about intellectual disability and intraspecies variation in general. You could call that an opportunity. Some might even call it a blessing. I call it an adventure in lifelong learning.”