The Sick Child: Parents' Perspectives: Editor's Introduction

When Deborah and Dale Minter first submitted their materials—her essay and his photographs—I was intrigued by the fact that both were collages of sorts, one verbal and the other visual. I was also struck by the presence of two "voices" in each—the voice of the parent and the voice of the professor (or, in Dale's case, the professional); the voice of experience and the voice of analysis. In order to better explore this phenomenon, I invited two literary scholars who have children with severe disabilities to write brief commentaries on the Minter pieces.

Joanne Trautmann Banks was an obvious choice because I knew about her struggle over the years with a severely disabled son. Moreover, Banks had read the Minter piece during the journal's review process and had written a review so fine that it made me wish I could find a way to include it in the issue. In fact, it was her review that gave me the idea of inviting the commentaries. Banks accepted my invitation, and I then asked Michael Bérubé because I knew he was a professor of literature who had recently published a book about a son with Down's syndrome. ¹ The only directive I gave Banks and Bérubé was to use both their knowledge as parents of a special child and their analytic skills (and experience) as literary scholars and professors of literature; to speak with both the voice of the parent and that of the professor in what they wrote. What the reader will find in all three essays is that these two voices seem inextricably blended—and blended, moreover, in ways that enrich each other.

Deborah Minter's "Research Shows" draws on entries in a journal she kept during her son's illness. It is deeply ironic that she should find herself teaching a course called "Stories and Human Experience" at the same time that she is dealing with an infant son undergoing treatment for leukemia. The two experiences overlap throughout the essay: in her support group (itself a kind of functional collage) she comments on the "intertextuality" of the dialogue; during her office hours she carefully shows a student the difference between an essay and a story.

Dale Minter's images illustrate, literally, the methodology and structure of the essays. There are particular themes that seem to run through the pictorial series: the baby, medical terminology, and the complementarity and contrast between the toys of childhood and the tools of medical science, as balls, dolls, and blocks are interspersed with syringes, IV bags, and surgical gloves. It is interesting to observe how Banks and Bérubé respond to the photographs in their essays. Banks comments on the photographs in a very teacherly endnote that suggests how they might be used in the classroom. Bérubé's recollection of forcing liquids by squirting a syringe into Jamie's mouth was quite possibly triggered by the same image in one of the photographs (image 5).

Both commentaries deal with issues of meaning and of consolation. Banks clings to literary fragments of all kinds; for her, literature serves as consolation. Bérubé, however, seems to eschew literature altogether in his reflections on the meaning of the experience. The only "text" he mentions is a parable intended to explain and console, which he effectively deconstructs, exposing it as woefully inadequate to this task. Banks ends on a note of affirmation that comes both from her position as parent and from her role as a teacher of literature—she describes a "love story" in the life of her child; she alludes to love stories in the literature she has taught over the years. ² Bérubé also ends by mentioning stories, but refuses consolation even as he refuses meaning of any kind. It is of interest that both authors choose to comment on the Minter pieces by contributing stories of their own, almost as if the act of storytelling were in some...