A Conference on Culture and Chronic Illness in Childhood: Conference Summary

A focus on disability and chronic illness within the disciplines of health, education, and social services has usually assumed a dominant cultural ethos grounded in European-American values, but there has been a failure to take into account the reality that there may be many different processes of adaptation utilized by different cultural and ethnic groups.

Abstract

A focus on disability and chronic illness within the disciplines of health, education, and social services has usually assumed a dominant cultural ethos grounded in European-American values. Indicators of social and psychological competence, normative behavior, response to stress and to illness, and even adaptation to life have been assumed to comprise a relatively homogeneous pattern. "Abnormal" has usually been defined as deviation from this pattern. For the most part, there has been a failure to take into account the reality that there may be many different processes of adaptation utilized by different cultural and ethnic groups. Such adaptation patterns should not be viewed as deviant, but rather as different and comprising strengths, resources, and advantages, as well as potential problems and disadvantages. Unfortunately, the continuing prevalence of racism in our society has contributed to equating different with deviant. Just as children from different cultural, ethnic, and racial groups are too often marginalized by society and experience restricted access or denial to important resources needed for optimal physical, psychological, and social development, so too, children who experience disability and chronic illness are too often marginalized by the attitudes and behaviors of others. The parallels between these two sources of exclusion—minority status and disability status—as well as the interaction of the two factors has received very little attention in research, service delivery, or policy formation. Even though pluralism is inherent in the history of the United States, our orientation has been homogenization—"the great melting pot." This is changing. With awareness of the growing proportion of ethnic minorities comprising tht US population and with a new positive value and emphasis being placed on ethnic diversity, there is renewed interest in cultural variation.