I had one of those day-long plane trips (lay-overs, delays, the whole nine yards) earlier this week and used the occasion to read Michael Bérubé’s Life as Jamie Knows It: An Exceptional Child Grows Up (Beacon, 2016). Jamie, born in 1991 with Down’s Syndrome, was the subject of Bérubé’s earlier account, Life as We Know It (Pantheon, 1996), which told the story of Jamie’s first three and a half years. Readers of Bérubé’s now discontinued (alas!) blog had been kept abreast of Jamie’s development since then, but the new book includes various blog posts embedded within discussions of some of the more vexing issues facing children—and adults—with “intellectual and/or developmental disabilities.”
The topics covered include: the burden on siblings without disabilties; the successes that have followed from the Individuals with Disabilities Education Act (IDEA) which mandated the inclusion of children with intellectual and developmental disabilities in regular classrooms wherever possible; the wonderful accomplishments of the Special Olympics; the lack of similar progress in finding employment for those same children once they become adults and age out of school; the heartlessness of the American “health system,” in which roadblocks to abortion are coupled with a refusal to adequately fund health care, as if disabilities and different kinds of health problems were the individual’s fault and sole responsibility; the important conceptual difference between a “disability” and a “disease” (with a corresponding difference between thinking about amelioration of/accommodations for a disability’s effects as contrasted to looking for a “cure” for a disease); and, finally, to considering the tiresome and depressing need of humans to find ways of discriminating against other humans. Bérubé’s exasperation breaks through in a sentence that I cherish because it so echoes my own current mood, as I watch the spectacle of the Republicans aiming to take health insurance away from millions. “But I am getting old and crotchety, and increasingly impatient with people who spend their lives justifying inequality and oppression, no matter where on the globe they might happen to live” (196).
I am giving entirely the wrong impression, however, if I am making the book sound like a grim sermon about human failings or a long complaint about the ways Jamie (or others with disabilities) are mistreated. In many ways, just the opposite. While those thousands of miles away from Jamie (the politicians and the pundits) spill their distempered bile, Jamie (with some exceptions, of course) meets with kindness, and useful, competent, and loving care from numerous teachers, “paid companions,” classmates, his older brother and his older brother’s friends, and health care professionals. Human decency breaks out everywhere in this book, as unexceptionally and yet as gratifyingly as Jamie’s own unpredictable—and sometimes astounding—breakthroughs to self-awareness and intellectual mastery. Face-to-face humanity comes off pretty good in this book.
Three further thoughts: The first is that we don’t know nothin’. As Bérubé puts it, early on: “[O]ur process of learning that our expectations for Jamie, and for people with Downs syndrome, are subject to constant revision—is very possibly the most important, the most consequential thing we can tell about our own journey” (16-17). We simply do not know what any Downs syndrome person might be capable of doing for a whole host of reasons: 1. The variety within that catch-all category; 2. The refusal in the past (in our culture, not all cultures) to educate, mainstream, or challenge those with Downs Syndrome (here’s one place where the Special Olympics has been so salutary); 3. Continued medical advances that push the limits; 4. Continued (let’s hope) acknowledgment of and attention to the various forms intelligence takes. (This last point is particularly relevant to me because I have a child who never tests about grade average on every standardized test—making school a perpetual scene of agony—but who has a variety of skills and competencies that play well in non-school settings.) I am a William James pragmatist to the core, so that returns me to a point made in my previous post about Owen Flanagan and Darwin: we don’t know what’s possible until we’ve tried something in the real, material world. Don’t let anyone tell you ahead of time that this or that will never happen. Yes, there are limits; but let’s discover them in and through practice, not have them imposed by theory.
Second, I am very taken, in the various anecdotes about Jamie, with his will to understand. The world is a puzzle to him—and he wants to know how it works. And sometimes he is a puzzle to himself—and wants to figure that out as well. Since this book pointed out to me my lamentable and culpable ignorance about Down’s syndrome (and, more broadly, other disabilities), I found Jamie’s intellectual curiosity, his need to know, inspiring. Ignorance is so often a deliberate choice—and Jamie’s hatred of ignorance a shining virtue.
Finally, to return to this intelligence thing. This book will make you cry in the good way, with its many tales of humans at their best. But it also reminded me of how perverse we human creatures are. At some level, we do know that intelligence, or making money, or besting others in this or that competition, or disdaining others for being less capable than oneself in the fifty yard dash or the SAT or the beauty contest, is not the road to a fulfilling life or a flourishing society. But it seems like we can’t help ourselves. We cling to the wrong priorities willfully and stubbornly. Bérubé makes a compelling case that, in fact, the world is better off having people like Jamie in it. We could even make a plausible case for a Darwinian natural selection argument for including Downs syndrome people among the varieties that survive in a Darwinian world. Why? Because Jamie reminds us of the real bases for happiness and meaning—and, presumably, happier humans are much more likely to want to keep this whole human species thing toddling along.
One thought on “Michael Bérubé’s Life as Jamie Knows It”
Another reason for including people with downs syndrome in the world is that species that are not genetically diverse are doomed to extinction! (if we are going to bring Darwin into it and why not-he had a son with down syndrome, too.)
Furthermore, ” Without changes in our DNA, we would still be amoebae and there would be no music in the world” – I forget who said this (or words to this effect, because I cannot remember the exact quotation, either).