- Articulations of Care:Motherhood, Memoir, Disability
Stories of health, illness, and ability often speak to the overlaying of political and personal spheres of experience. The purpose and providence of such representations motivates much scholarship in the field of health humanities, especially in critical explorations of the apparent transparency of first-person or non-fictional writing. Is the memoir’s aim to recount the writer’s own narrative of patienthood? Is it to instruct a reader’s navigation of similar experiences? Is it to indicate the need for social and political change—or even to agitate for them? This genre’s strongly purposive quality is amplified in the case of the family or parent memoir, an increasingly prevalent kind of life writing primarily focused on the experience of parenting a child with disabilities. Beginning with chronicles including Jane Bernstein’s Loving Rachel: A Family’s Journey from Grief (1988) and Michael Bérubé’s Life As We Know It: A Father, a Family, and an Exceptional Child (1996), [End Page 428] the parent memoir has recently flourished and consolidated around its own discernible conventions, especially the evolution of parental grief into advocacy for a non-medical or social model of disability.
Another critical feature is the parental memoir’s invocation (and often discussion) of the ethical conundrums of representation and consent. As Alison Piepmeier and others have observed, the parent memoir presents an especially challenging literary genre given its unsettled relationship to the aims and values of disability studies.1 It is difficult not to think of the parent memoir as the material outcome of an inescapably utilitarian calculus, since its publication must in some sense outweigh the medical-ethical values of confidentiality, privacy, and the autonomy of its (often child or adolescent) subject. For readers interested in disability’s situation within studies of literature and medicine, this reality connotes a duty to answer: Why write a parent memoir? Why read it? And most urgently in the case of the memoir inspired by the child with disabilities: who benefits?
Rachel Adams and Donna Thomson have recently published memoirs that provocatively engage these questions. In Raising Henry, Adams (a professor of English at Columbia University) chronicles the first three years after the birth of her son with Down syndrome. Thomson, who spent much of her life in the Canadian Foreign Service, writes in The Four Walls of My Freedom of her son Nicholas who was born with cerebral palsy and is now in his mid-twenties. Putting aside their differences for a moment, these eminently readable memoirs are also striking for their shared aims, textual strategies, and even narrative episodes. Both authors recount the shock of their child’s diagnosis and the trauma of improperly inserting an infant’s feeding tube. Both describe their negotiation of resource-strapped services and rally hard against the tragedy narrative of disability. The loneliness of motherhood, exacerbated by callous medicalized and social isolations imposed upon each author’s child, is matched by episodes of profound contentment and pleasure; both Adams and Thomson describe touching moments of shared intimacy involving the ritual of baking and eating birthday cake with their sons, and indicate their appreciation for past memoirists (including Bérubé, Eva Feder Kittay, and Emily Perl Kingsley) whose experiences parenting children with disabilities amount to an activistintellectual community and virtual caregiver network. By testifying to their authors’ multiple postpartum transformations of identity, Raising Henry and The Four Walls of My Freedom are worthy additions to the parent memoir genre. Their value is especially apparent in the distinct ways Adams and Thomson apply the insights of the humanities to [End Page 429] reimagine care as a deeply embodied yet textual act, in which the literary imagination becomes a crucial facilitator of care for the child born with disabilities.
Raising Henry is born out of an almost improbable...