Jamie is a young man in his early twenties. He has Down syndrome and is the son of Michael Bérubé and Janet Lyon, who teach at Penn State. Michael has just published Life as Jamie Knows It: An Exceptional Child Grows Up (Beacon 2016). Here’s how Michael characterizes his book (p. 16):
In the following pages, Jamie and I will tell you about his experiences at school, his evolving relationship with his brother, his demeanor in sickness and health, and his career as a Special Olympics athlete. And we’ll tangle with bioethics, politicians, philosophers, and a wide array of people we believe to be mistaken about some very important questions, such as whether life is worth living with a significant disability and whether it would be better for all the world if we could cure Down syndrome. (Quick preview: Yes. No.) But we will not tell you that Jamie is a sweet angel/cherub whose plucky triumphs over disability inspire us all. We will not tell you that special-needs children are gifts sent to special parents. And we will definitely not tell you that God never gives someone more than he or she can handle, because as a matter of fact, God dos that all the time–whether through malice or incompetence I cannot say.
That’s a fair characterization of the book. There are stories about Jamie, lots of them, and some stories by Jamie in the Afterword. But there is also philosophy, especially the final chapter, and discussions of disability policy, health care, education, and job-related. The stories about Jamie, his family, and friends, both illuminate and motivate the more abstract discussions. Here and there, as you might already have deduced, Michael slips in a zinger, sometimes mild, sometimes hot and spicy.
In the interests of full disclosure I should tell you that Michael is a friend. While I’ve only seen him face-to-face once, I’ve known him online for sometime, interacting with him through his now defunct blog, American Airspace, where Jamie was a frequent topic of conversation, and through email about this and that, mostly recently about Jamie’s art – a topic we’ll get to in due course. Thus this is not an arms-length review. It is simply a discussion of issues raised by a thought-provoking and well-written book.
