In The Boys: Or, Waiting for the Electrician's Daughter, John Terpstra (2005) tells the story of his wife's three brothers — Neil, Paul and Eric — all of whom had died within a six month period in 1978 from complications of Duchenne muscular dystrophy at the ages of 24, 21, and 19, respectively. This book is a memoir that documents the daily trials and tribulations of the last year of the lives of "The Boys" when Terpstra and Mary Ann, who is the electrician's daughter, moved in with her parents to help with the increasing personal and physical care that her brothers required. Their story is told in 213 fragments/vignettes that include: Terpstra's poems; journal entries and poems from Mary Ann; letters and other writings from "The Boys"; as well as tidbits of their family history; and theological reflections.
From the very beginning of the book, Terpstra was extremely successful in documenting both the physical and human geography of an ordinary working class family coping with three children who all had the same severe disability. However, the family geography shifted rapidly with the death of their grandparents and the departure of relatives to the point that only their immediate family remained. It was at this point that the insidious progression of Duchenne muscular dystrophy became more prominent, requiring greater involvement from medical personnel and caregivers within the community. As such, the home took on a greater role as their limitations of decreasing mobility/movement prevented them from venturing beyond its confines.
After describing the physical geography of the family home and surrounding community, Terpstra spent time describing what could have been considered the human geography of the boys. He takes great pains to show all three boys as separate individuals and not just variations of the manifestation of Duchenne muscular dystrophy. Most notably, Terpstra stated that "Their shared disease gives them a single identity, although the disease itself differentiates between their body structures dramatically. They are distinct from each other, physically and in personality" (fragment/vignette 46). However, the lack of emotional resonance surrounding these key personalities left a vague sense of emptiness. More pointedly, there are usually extreme emotions that accompany a severe disability, in either the individual or in their immediate family; however, Terpstra never conveyed the emotional resonance that the subject matter required and only allowed a glimpse into some of the emotions that were felt and experienced by these key personalities.
Terpstra was extremely successful in rewriting restrictive cultural narratives that would have typically viewed the lives and deaths of The Boys as both a personal and familial tragedy. For instance, in Westernized cultures, disability is often shaped by biomedicine and society's notion of what constitutes an able body. Misconceptions surrounding disability often get translated into viewing the disability as a personal tragedy or misfortune, and it is by this standard that society and biomedicine presumes that the individual is comprised entirely by the disability itself. As such, Terpstra provided a counter-narrative to this deep-seated misconception by allowing the reader to reflect not on the physical limitations of the brothers, but on their active imaginations and exuberant personalities, which extended well beyond the confines of their bodies and home. Furthermore, in light of rapid advances in genetic screening and carrier testing, this rewriting of cultural conceptions surrounding disability and death is timely in that reading such a memoir may allow for prospective parents to more clearly envision raising a child with a disability, rather than passively choosing selective abortion on the grounds of fetal disability.
Despite its weaknesses, the memoir celebrated and honoured the last year in the lives of the three brothers and challenged conventional notions that would dictate viewing their disability and deaths as a tragedy, which we believe to be its greatest strength. We therefore recommend this book, which was also short-listed for two of Canada's most prestigious non-fiction prizes: the Charles Taylor Prize for Literary Non-Fiction and the British Columbia Award for Creative Non-Fiction.
