Joan Ablon

The nature of stigma and medical conditions

Stigma is societys negative evaluation of particular features or behavior. Cultural beliefs that define certain conditions negatively may create tainted and discounted identities for affected individuals and their families. Varied dimensions of stigmatized medical conditions include the nature of an illness, its history, and attributed characteristics; sources of the creation and perpetuation of stigma; the nature of the populations who are perceived to carry the illness; the kinds of treatments and practitioners sought for the condition; and how individuals with stigmatized medical conditions cope with societal insults that endanger their personal identity, social life, and economic opportunities. Individuals with stigmatized medical conditions, including epilepsy, may benefit from support groups that can help enhance their confidence. By focusing on the social and political resources and recourses available to them, such individuals can make substantial strides toward gaining their freedom from stigma.

Gender response to neurofibromatosis 1

This paper explores differing patterns of gender response to neurofibromatosis 1 (NF1), a neurological genetic disorder. Perceptions of gender response expressed by persons with the condition and research findings about lifestyle and attitudinal differences related to the lived experience of coping with the condition and its consequences are discussed. Possible explanations for the causes of major social lifestyle differences between the genders are suggested. The data presented here have resulted from interviews with 30 affected individuals and parents of affected children recruited through NF support groups and from the caseloads of the Genetics Departments of two metropolitan hospitals.

Stigmatized health conditions

Abstract Anthropologists only recently have turned their attention to stigmatized populations in American society. The papers in this collection address varied issues of stigma and health: life career experiences of those with varied stigmatized illnesses; issues of identity, perception, and cognition related to specific health conditions; modes of coping with stigma—personal and group adaptive strategies, and positive functions of such adaptive strategies. The studies draw from a diverse range of field populations: diabetics, the deaf elderly, dwarfs, and severely scarred former burn patients. These papers originally were presented in a symposium entitled The Anthropology of Stigma organized and chaired by Joan Ablon at the annual meeting of the American Anthropological Association, Los Angeles, November 14–18, 1978.

Reactions of Samoan burn patients and families to severe burns

Abstract Samoan families involved in a disastrous fire in a West Coast city in 1964, and medical and agency personnel who worked with fire victims were interviewed 5 years after the fire to determine individual, family, and community response to the fire and its aftermath. Medical personnel uniformly remarked on the extraordinary stoical response of patients to pain, death of loved ones, lasting disfigurement and related potential stressors. Samoans reported considerable initial distress, but, in contrast with published reports of American burn patients, there were few acute or lasting emotional problems. Specific Samoan cultural, social, and religious patterns which appear to have mitigated or even precluded widespread emotional problems are suggested. It is commonly acknowledged that cultural factors contribute significantly to responses to pain, injury, death and other universal potential stressors of man. This paper explores some of the broader aspects of what Mechanic has called “illness behavior” —the manner in which pain and symptoms are defined, labeled, perceived and reacted to. The fire described here resulted in 17 deaths and some 70 moderate to severe burn injuries. The survivors of this fire experienced a variety of potential stresses triggered by severe burn injuries, long hospitalization and recuperation periods, and resulting permanent physical disfigurement. Yet the Samoan response offers a remarkable contrast to that customarily reported in the literature.

Dwarfism and social identity: Self-help group participation

Abstract This paper describes a specific process relating to destigmatization and social identity which is a chief dynamic operative in a self-help group for dwarfs, Little People of America. In our society persons of abnormal short stature typically experience varied forms of stigmatized and stigmatizing social interactions within the average sized world. Data are presented here from a recent study of dwarfs and their families which examined a variety of dimensions of the dwarfism experience and the impact of self-help group membership on social identity and life style. It is suggested that a cognitive restructuring of self-image occurs through the process of forced objective perception of others who share a similar physical condition. This acceptance of self-identity and the physical identification of dwarfism then allows the person to lead his/her life more happily and effectively.

Personality and stereotype in osteogenesis imperfecta: Behavioral phenotype or response to life's hard challenges?

Fifty‐five adults with osteogenesis imperfecta [OI] types III and IV were interviewed to chronicle their medical, personal, and social experiences in living with OI. Subjects were recruited through the Osteogenesis Imperfecta Foundation, through physician referrals, and through other persons with OI. One purpose of the research was to examine the stereotypes of high intelligence and euphoric personality often attributed to persons with OI, and to explore whether these characteristics might constitute a behavioral phenotype. Participants were observed by the researcher to be characteristically bright, talkative, articulate, “up” emotionally, and accomplished. In fact, most of the persons illustrated well the characteristics of the stereotype. Participants suggested and described life experiences and difficult medical and social challenges which they felt could contribute to the development of the attributed characteristics. The history of the “euphoric” attribution is traced. Many participants expressed derision concerning this attribution. The commonly understood meaning of this term trivializes the years of painful medical procedures, suffering, and related hardships experienced by subjects in their lives. I suggest that the concept of “resilience” offers a more appropriate context for related future research with this population. The consideration of the exceptional challenges faced by persons with OI and others with such demanding medical conditions throughout their life cycles would add a significant environmental dimension to the study of behavioral phenotypes.