Burghardt, Madeline (2018). Broken: Institutions, Families, and the Construction of Intellectual Disability. McGill-Queen’s University Press. ISBN: 978-0-7735-5483-2
Reviewed by Chelsea Temple Jones, Postdoctoral Fellow, Faculties of Media, Art, and Performance and Social Work, University of Regina
Intellectual disability is a phenomenon that is difficult to understand. On the one hand, there are competing ideologies about what intellectual disability is, and whose experiences of it count as knowledge. On the other hand, we live in a world that still struggles with what is “best” for labelled people, often without their input. Researchers taking up this tumultuous terrain often do so in institutional contexts, making their inquiries extra eligible for critical scrutiny. So, coming across a research story that is both theoretically descriptive and directly accountable to disabled people’s stories is not just a treat—it’s a relief.
Madeline Burghardt’s Broken: Institutions, Families, and the Construction of Intellectual Disability offers up intellectual disability as a malleable cultural construction that is eligible for reflection, specifically by survivors of some of Ontario’s most insidious institutions. Burghardt explains the ongoing process of institutionalization by tracking cultural milestones. From the rise of disability “experts” in a pre-WWII era to the 2010 class-action lawsuit launched against the provincial government, the research centres survivors’ interview-based testimony. Other voices emerge, too, including those of siblings and parents. All in all, Burghardt highlights 36 interviews from 20 different families and four institutional staffers. The book is a time capsule of life under a neglectful directive to institutionalize, which, decades later, pivoted into a directive to deinstitutionalize (157).
The impact of institutionalization on families and communities reveals a campaign of loss: “lost possibilities for potential relationships, and lost opportunities to imagine and create a more inclusive society” (189). The theme of loss weighs on each page of Broken. As the interviewees’ stories unfold, readers witness how the inscription of intellectual disability on people’s lives splinters families, segregates communities and justifies injustice with little remorse. This loss is compounded when survivors are unable to describe what their lives were like in institutions (125), and when readers are reminded of the “lost generation”—institutionalized people who never made it out alive (157, 161). That intellectual disability is a concept characterized by loss reminds us of the difficult affective work involved in its related research.
Deploying a critical, constructivist stance, Burghardt takes a stab at this work. She writes a clear pathway through the complex, policy-laden processes of de-, re-, and plain old institutionalization in Ontario: charity models paired with the progress of modernity and the rise of market capitalism (10, 19); a steady reliance on eugenic thought and scientific explanations of humanness (13); long-standing gender and domestic arrangements (138); and the parallel rise of institutionalization with the establishment of residential schools (53-54). Here, Burghardt explains how the Eurocentric practices of labelling and institutionalizing disabled peoples emerge alongside the colonial incarceration of Indigenous children in residential schools. What’s often missing from the history institutionalization, Burghardt suggests, are accounts of BIPOC families interacting with (or somehow dodging?—we don’t know) state-run institutions targeting disabled people (77). Though region-specific, her historical set-up of institutionalization tells us something about where families in and beyond Ontario have historically pegged the “problem” of disability: those who saw disability as a problem often understood institutionalization as a reasonable solution, while others saw the decision to institutionalize as the problem (61).
Then, readers find themselves in the present-day, wherein we still rely on social welfare agencies to understand and professionalize disability, often to the detriment of labelled people awaiting justice. We are still embedded in the historical arbitrariness of a system of institutionalization which “supports ‘great jobs’ and horrible existences simultaneously” (171). Particularly for readers in industries where incarceration is the norm, there is much to learn from the book’s provident analysis: firmly putting to rest a familiar, flippant justification that “things were different back then,” Broken reminds us that there have long existed state-sanctioned methods to suppress deviance and support social productivity (22)—and such methods still exist. Broken’s interview evidence shows that families have been—and still are—stuck in the grey areas, not knowing exactly what to do: for example, should families follow or reject “expert” advice? This question doesn’t disappear when institutions close. Burghardt reminds us that the line between “back then” and right now is thin at best.
Overall, Broken pulls readers into an ethos of accepting responsibility for intellectual disability as something that materializes cultural prohibitions against otherness and order. Then, in a stunning passage on ontological meaning that is the heartbeat of this book, Burghardt leaves readers with a jarring question that points to how all of our perceived differentness can be targeted: “What protective wall of able-bodiedness and intellectual capacity do the majority of people rest behind, unaware of the historical flexibility that characterizes their borders?” (102)
Burghardt’s skillful analysis of survivors’ stories helps us through the struggle to understand intellectual disability. And, through the author’s hindsight, we might be relieved to realize that “if the ease with which the state assumed control over many thousands of individuals is a cautionary tale” (106), so too might survivors’ and their families’ resistance teach us about how to loosen the government’s grip over labelled people’s lives. Another moment of relief is in adding this volume to a growing canon of critical research about intellectual disability (see Carlson, 2010; Malacrida, 2015; Rapley, 2004; Rossiter & Rinaldi, 2019). Broken places us on the heels of a modern era reliant on institutionalization as a tool for understanding itself, clearly demonstrating that the cost of this rationalization is high, heartbreaking, and worth considering in any research about intellectual disability.
- Carlson, Lucia. (2010). The faces of intellectual disability: Philosophical reflections. Indiana University Press.
- Malacrida, Claudia. (2015). A Special hell: Institutional life in Alberta’s eugenic years. University of Toronto Press.
- Rapley, M. (2004). The social construction of intellectual disability. Cambridge University Press.
- Rossiter, Kate & Rinaldi, Jen. (2019). Institutional violence and disability: Punishing conditions. Routledge.