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Parent to Parent: Raising Children with Disabilities as They Come of Age

A Q&A with Michael Bérubé

Michael Bérubé with his son Jamie
Michael Bérubé with his son Jamie

The world first met Jamie Bérubé as the sweet boy in Life as We Know It: A Father, A Family, and an Exceptional Child, written by his father, disability studies scholar Michael Bérubé. Published in 1996, the book covers Jamie’s early years as a child with Down syndrome. Twenty years later, Michael Bérubé has followed up on his son’s progression through childhood, adolescence, and adulthood in Life as Jamie Knows It: An Exceptional Child Grows Up, as always, written with Jamie’s participation. No longer little, Jamie still loves the Beatles, pizza, creating art, and filling legal pads with lists as he did as a child. Now he’s navigating his academic experiences in school, his Special Olympics competitions, his evolving relationships with his family members, his encounters with illness, and the complexities of entering the workforce with a disability.

As the production manager for Life as Jamie Knows It, I was thrilled to have the opportunity to work with a writer whose experiences in parenting and in disability advocacy resonated so deeply. As the parent of a sweet, funny, music-loving, list-making (!) autistic son, Jamie and Michael’s stories touched, delighted, and inspired me. Given the opportunity to have a Q&A with Michael, parent to parent, I jumped at the chance to hear his take on some of the most pressing issues. 

—Marcy Barnes

Marcy Barnes: It would surprise some readers to describe your model of consulting with Jamie on everything you’ve included in the book as “radical.” But I think it is! How do we, as parents, not get in the way of our children’s right to “nothing about us without us”? Especially those of us with children who don’t use typical methods of communication. 

Michael Bérubé: I don’t think it’s radical; I think it’s democratic with a small d! I think it has everything to do with the conclusion of the final chapter, in which I suggest (or, perhaps, argue emphatically) that “a capacious and supple sense of what it is to be human is better than a narrow and partial sense of what it is to be human, and the more participants we as a species can incorporate into the determination of what it means to be human, the greater the chances that we will enhance our collective capacities to recognize each other as humans entitled to human dignity.” I think of it this way: as Jamie has grown and matured, as he has expanded his sense of the world, he has come to his own understanding of the way the world should be. And he has come to understand that he is the subject of these stories, and that with his increasing capacity to understand these stories he has gained the ability to comment on them—to ask that certain stories be told, to insist that other stories not be told, and to quibble with my choice of words in the story of how he decided to jump off a diving board. Granted, there are some aspects of the book that are almost wholly mine: Jamie knows about, but doesn’t participate in, my various quarrels with journalists and politicians and bioethicists. But he knows what it means to have someone (me, his mother, his brother, himself) tell his stories, and because these are stories about him, he should contribute—to the greatest extent possible—to how those stories are told.

As for how to represent children who don’t use typical methods of communication: after she read Life as We Know It, Clara Claiborne Park—author of two amazing books about her autistic daughter Jessy (The Siege and Exiting Nirvana)—wrote to me to say that she admired the book except for the part where I seemed to stumble into the trap of providing performance criteria for being human. In the final paragraphs of chapter five, I had written that “the ability to communicate lies in our software somewhere” and that “among our deepest, strongest impulses is the impulse to mutual cueing.” At the time, I imagined that I was being radically egalitarian, ending the chapter with what I thought was a rallying cry for everyone who loves or knows or works with a person with intellectual disabilities: “Communication is itself self-replicating. Sign unto others as you'd have them sign unto you. Pass it on.” Yes, well. I had not meant to establish any performance criteria for being human. On the one hand, Park convinced me that this could be an insidious argument for ranking our fellow humans by their capacity to communicate, or by the quality of their mutual-cueing software; on the other hand, Park reminded me—by sending me one of Jessy’s amazing works of art, a postcard version of her rendering of the Flatiron Building with two suns in the sky—that there is no reason to think of communication in terms of language. This is not a typical method of communication, I thought to myself. It is way more awesome.

Ralph Savarese’s work with his nonvocal but mind-expandingly imaginative son DJ works the same way. In his book, Reasonable People, the passages written by DJ will blow you away—as they were surely meant to do!

MB: Perhaps to parents of neurotypical children the many moments of tether-stretching you do with Jamie is unremarkable, but I am wholly impressed! How do you balance the fence between protection and over-protection? 

Bérubé: We do no such thing! We boing back and forth on that fence almost on a daily basis, allowing Jamie to build confidence in his burgeoning independence one day, then fussing and fretting and keeping him well within our sights the next day. But the question reminds me of something I should have included in the chapter on Jamie’s relation to Nick. Nick has always pushed Jamie to do things on his own, sometimes when I have been reluctant or skeptical. Sometimes that involved little things, as when Nick went golfing with us and insisted that Jamie take care of his own clubs (I was perfectly willing to hand Jamie a club while I selected one of my own), and sometimes it involves quite daunting things, as when Nick suggested that Jamie fly solo to St. Louis (from Pittsburgh, on a direct flight) to visit him in college for a weekend. That was a lovely idea, but [my wife] Janet and I thought it was a bit too ambitious. But I can say in general that some of Jamie’s tether-stretching has been Nick’s doing, and I need to thank Nick for that.

Life as Jamie Knows ItMB: Can you discuss the term “functioning”—as in “high” or “low”? There are the obvious ways in which we limit our children with such loaded adjectives, but it still seems difficult to escape them when trying to get people outside of the family to understand our children’s needs. Is describing “functioning” merely a tool for parents and teachers to describe what they are experiencing in caretaking, rather than what the child is or will be capable of? 

Bérubé: You are, I take it, referring to the passage in which I say I can’t abide the term “high-functioning” because of the way it evokes an intellectual-disability hierarchy. And certainly, “high-functioning” and “low-functioning” are improvements on “idiot,” “moron,” and “imbecile,” the classification system of a century ago. Here’s the long version of an answer.

Some years ago, I was playing hockey in the men’s league in State College. I scored a goal, and the goalie extended his right leg even though I was shooting over his left shoulder. In other words, he deliberately tripped me, and I went crashing into the boards. I injured my left shoulder as a result, and could not extend it behind my head or the plane of my torso for about six months. So I lost some significant range of motion, and I found to my dismay in the summer that I could not play softball; indeed, I could not even play catch. A deep-tissue massage gave me back about ninety-five percent of my...functioning.

So for a while, I fell below normal functioning (for me). Notice that I’m fine, in this context, with saying “normal” as well as “functional.” Now let’s remember that when Alfred Binet first devised the IQ test, he did so in order to find areas in which people with intellectual disabilities were having trouble, and he did this in order to help them. Here, too, there is a non-coercive idea of the “normal,” and of “functioning,” that is tailored to each individual. But then let’s remember how quickly this benevolent device was turned into an apparatus for ranking humans on a single scale of “intelligence” and reading some of them out of the human family altogether.

Autism presents an especially difficult challenge in this respect, because so-called “high-functioning” people on the Asperger’s end of the spectrum are actually capable of intellectual feats we putatively neurotypical people are not. So I try to use the terms “high-functioning” and “low-functioning,” just as I use the term “intelligence” itself, with great care—with tongs, protective Mylar suits, and an array of footnotes and caveats. Otherwise we’re right back to a disability hierarchy in which the “high” is more valuable than the “low.” I would rather describe people as specifically and as individually as possible: makes awesomely detailed lists and has great spatial memory but has trouble with the abstract concept of money. Writes fluidly and quickly, attends to fine details, but has limited range of motion in his left arm. Stuff like that.

MB: The concept of “inclusion” for persons with disabilities often seems to end when they age out of the system at twenty-two. What are your thoughts, in terms of both policy and social-supports, on extending inclusion into the post-school years?

Bérubé: I only gesture at this toward the end of chapter six, when I talk about inclusive employment for people with intellectual disabilities, but I would love to see a dramatic expansion in the social welfare state that would not only provide people with the job training and job coaches they need but would also provide employers with financial incentives to hire people with disabilities. I know that’s a tall order, but it’s what I would be talking about if I were running for President. Or running for anything.

And once more with feeling, my hearty thanks to Tony Sanfilippo and to everyone at Penn State Press for their faith in Jamie’s cataloguing and list-making and copy-and-pasting skills.

MB: How can the disability community and its allies harness the energy of other activists’ rights movements and vice versa? 

Bérubé: If I knew the answer to that I would be an activist and organizer! Part of the problem, of course, is that “disability” names about eighty thousand conditions of body and mind (give or take a few thousand), so that you have organizations devoted to autism, or to deafness, or to Down syndrome, or to mental health, etc., but no organization or lobbying interest devoted to disability as such. Janet once suggested that people with disabilities and their parents, siblings, guardians, and allies wear a lapel button reading “DC.” Member of the Disability Community. And you know what? If everybody who is actually in the disability community did that, the world would know that we are legion.

In the meantime, I do what I can for my son in the public sphere, given my abilities. Emily Kingsley decided that the best thing she could do for her son Jason (and everyone in the DC), as someone who worked on Sesame Street, was to incorporate disability into Sesame Street’s representations of human diversity. I take my inspiration—and I use the word advisedly—partly from her. I don’t have that kind of access to media, but I have access to the worlds of academe and publishing, so I do what I can when I can.

MB: My favorite parts of the book are SO funny (I still chuckle about the official pudding!) and I loved reading about Jamie’s adventures. What new adventures does Jamie have coming up? 

Bérubé: Right now, we are embarking on a very adventurous new adventure. Along with three other families in State College, we are buying a house in which our adult children can live with supervision—some permanently, some for a month at a time. We have to form a limited liability corporation. We have to hunt around for a bank that will give us a mortgage we can afford. We have to find out if our kids-who-are-no-longer-kids can live together amicably. It is kind of terrifying—and kind of thrilling.

As for the funny parts of the book: thank you! I think it is important that some of the silliest episodes and observations are all Jamie’s doing. He has such a keen eye for the absurd: official stuff like official pudding, funny name in every state. All I have to do, when he notices that Casillero del Diablo is the official wine of the New Jersey Devils and invites me to marvel at this aspect of the world we live in, is to serve as his scribe.


About the Author 

Michael BérubéMichael Bérubé is the Edwin Erle Sparks Professor of Literature at Penn State University. The author of ten books, including The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, he lives with his family in State College, Pennsylvania. Follow him on Twitter at @MichaelBerube1.