About the Title

In a world filled with children at play, blisters, scrapes and cuts are a fact of life. They are part and parcel of growing up and taking risks. Children usually respond to such injuries with cries of pain, calls for sympathy, and requests for band-aides. The band-aides covers the injuries, and life goes on. Quick fixes. Efficient and effective. The children wipe their tears and resume their play.

Band-aides, however, don't work this magic with chronic illness. They cannot cure it, take it away, cover it up or prevent it from occupying a large part of the lives of the seven and a half million children whose medical conditions interfere with their daily activities. Despite this unfortunate reality, school settings often employ "band-aide approaches" to the educational issues that arise when chronic illness enters the classroom. When problems are obvious, remedies are sought. To cover the wounds. To make them all better. But when children with chronic illness bring their stressors to school and hide them under the cloak of normalcy, the educational system is not proactive in its attempt to understand and meet the needs of this growing population. Like the limitations of the humble band-aide, cover-ups don't work when the wound is too deep, or too pervasive.

And Blackboards

Shiny shoes, sharpened pencils and brand new backpacks herald the beginning of school each year. Children enter classrooms eager to learn and anxious to be counted in as valuable members of their peer groups. Blackboards are central to that learning, and metaphorically appropriate symbols for this project. Blackboards frame issues while defining their temporality. Problems and solutions, greetings and instruction; all here this morning and erased this afternoon. The slate is wiped clean with the assumption that what was on the board is now firmly etched in the minds of the children.

Chronic illness is such a topic. Mentioned occasionally in the context of children returning to school from hospitals, it is often afforded the same temporality that blackboard messages receive. Studies accumulate that attest to the danger of ignoring the complexity of issues that surround children with chronic illness and of paying only transitory attention to the ongoing covert needs of this population-needs that just can't be erased at the end of the day. All children benefit from an understanding of chronic illness. Unfortunately, too many erase from the board any reference to it, having learned that it's better to pretend that it does not exist. They all know when it's present, though, and they all know, by the silence that surrounds it, that there must be something about it that is terribly wrong. What they don't know is how to think about it, and they can't figure out why the subject is taboo. And so they cope, and that coping often takes the form of withdrawal from the source of this conundrum, or of ridicule of their classmates who must come to school with the burden of chronic illness often heavy on their backs.

Blackboards also delineate the classroom, announcing the identity of its inhabitants and the nature of its charge. They make clear that when in school, the focus should be on students, not patients. On learning, not on medical diagnoses. And that is as it should be. The trick is for the educational system to attend to the issues surrounding chronic illness without medicalizing them; to normalize the experiences of this population, discarding the stigmas that stick like sand spurs to their differences. Much of the literature refers to "chronically ill children" rather than children who have a particular chronic illness. The short-cut that this language provides shifts the focus of attention from children who have medical problems to children who are somehow defined by those same problems. Yet the illnesses are realities of the children's lives, not definitions of who they are.

This project is an attempt to dissociate the children from those labels that they didn't ask for, didn't want, don't like and can't get rid of. While acknowledging the reality of the illnesses and suggesting the need to pay close attention to their presence, the title teases apart the tight association between children and disease. It describes rather than defines the children. And it suggests that children with chronic illness are first children, more like than different from their healthy peers. The nature of the language used in reference to children makes a significant difference in how they see themselves and how others perceive them. The notion that children with chronic illness have more similarities with their healthy peers than they have differences, and the belief that those similarities bond them in friendship and garner them support, informs the collection of pages that is Band-Aides and Blackboards.

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: March 27, 2009