I remember in my childhood a great variety of bodies and behaviors surrounding me at various events -- my dad taught special ed, and was very involved with different PTA and support groups, so we'd end up at fundraising carnivals, summer picnics, open houses. And there'd be kids playing who were three times my age but acted far younger, kids rolling chairs as well as running around, kids yelling inappropriately as well as appropriately. It didn't really hit me 'til a bit later that there was elsewhere, beyond the Fairs and picnics, a great social wall around certain of those differences -- some of us kids running around, spilling drinks, screaming get a free do-what-you-want-you-whippersnappers pass, even a rueful indulgent smile no matter where we ended up. Other of us kids got stares, or ignored, or rueful indulgent evocations of pity. Certain kinds of bodies, and certain kinds of behavior, marked certain kinds of kids as a certain kind of person. (The rest of us were just kids.)
So it's never been difficult for me to conceptualize disability as a social disorder -- a set of ideas and assumptions (and consequent practices and rules and systems) which produce a kind of person (the disabled) who we treat quite differently. I don't mean to imply that there is no physical or mental difference; but when I (a chubby kid) played little league, my teammates might be shorter, thinner, more adept with a mitt, fumbling and knock-kneed -- we were enormously different in our capabilities and our physical gifts. But such differences got maybe a small modifying tag (fat kid, good athlete, egghead), while other kinds of differences (like my cousin, who had trisomy 18, and a consequent set of physical and cognitive impairments) totally informed what strangers (and even relatives) "knew" about her. She was quickly summed up by a few physical and mental differences. Significant ones, sure--but why do *these* differences matter so much, become so salient (hell, more than salient--unavoidable, "natural," necessary) in our understanding of her identity?
I give this extended personal intro 'cause it echoes what Dreger does so well in this book -- through a focused study of various cases of conjoined twins, she critically and compassionately interrogates how our assumptions about anatomy inform (and deform, degrade, limit) our understanding of identity. Hers is the best kind of interdisciplinary argument, engaged at the crossroads of medicine, social history, cultural values, law, ethics, and personal accounts -- yet never blithely borrowing from fields to make a pre-determined case. Her careful and nuanced exploration of the questions one ought to ask about the issue of separating conjoined twins is fair, wide-ranging, and complex. Yet her writing style is not the kind of knotted garble too many of us in academic fields produce; she writes beautifully, clearly. And whether particularly invested in issues about conjoined twins or not, this book will provide all kinds of fascinating, useful challenges for thinking about the bodies all around you, and your own.
I must admit that some of what she said, some of the broader questions, some of the case studies, some of the critical arguments seemed familiar to me (and she cites a number of other works worth reading, too, that I happen to have read). So my star rating is perhaps a bit lower than it might otherwise be--my own familiarity very (very) slightly limited my appreciation of Dreger's work, if only because it wasn't as startling a set of questions as it might be for others, not as innovative a critical study. But it's particularly good at examining and challenging the medicalization of identity. And it's a great introductory reflection on the pretty new field of disability studies.
I might also point people toward Michael Berube's Life As We Know It
, which is both memoir and lit/cultural theory, tackling some similar interdisciplinary questions but focused on Down's syndrome (which his son Jamie has).