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In "A Person's a Person: Children's Rights in Children's Literature," Jonathan Todres and Sarah Higinbotham write that "children's literature [has] been ignored as a rights-bearing discourse" yet "literature is a source of law for children" (1). In this spirit I propose reading children's books about cancer as potential rights-bearing, or rights-suppressive, discourses, through the lens of anthropological findings about actual children facing potentially terminal illness. Myra Bluebond-Langner, in her 1978 study of children with leukemia, The Private Worlds of Dying Children, depicted a range of denial, deceit and rare honesty she witnessed and rigorously collected, most frequently demonstrating "mutual pretense," an unspoken consensus in which "each party defines the patient as dying but acts otherwise," resulting in hopeful expression only (199). Rather than encouraging child patients, such denial further burdens them with keeping up a masquerade while denying their need for "open awareness," which would allow freely discussing concerns, questions, and fears (220-21). High-profile cases from news media suggest that this trend is on-going in spite of positive developments codifying child medical rights, demonstrating how mutual pretense infringes on the right to informed consent.
Adults often actively withhold the truth from dying child patients, denying their rights to medical honesty, awareness, and agency. I will demonstrate how pervasively popular American adult narratives for children about cancer mirror the same relation-most often modeling "mutual pretense" rather than "open awareness" by either depicting dishonesty towards the dying in their representations without critique or by directly lying to the reader, thus perpetuating a rights-suppressive discourse. The few exceptions that critique mutual pretense help to highlight the dominant practice but also suggest that through more recent and mature narratives about cancer, open awareness (and thus implicitly, informed consent) is encouraged.
Considered within the ethical parameters of child medical rights, texts as diverse in ethnic and historical contexts as Eleanor Coerr's Sadako and the Thousand Paper Cranes (1977), Virginia Hamilton's Bluish (1999), Cynthia Kadohata's Kira-Kira (2004), and David Small's Stitches (2009) depict and sometimes perform the same denial and dishonesty, demonstrating the pervasiveness of a protectionism that in fact impinges upon children's participatory rights to full knowledge and self-determination of their bodies. Ultimately cancer narratives tend to protect parents during their emotional struggle to support children rather than respecting young...