Abstract
This chapter explores the significance and impact of social stigma, society’s expressed negative assessment of and response to appearance and behavior which challenges cultural and social prescriptions for persons with NF1. Persons affected by NF1 may experience a variety of symptoms—visible tumors, learning disorders, and others which are not easily accepted by this society which places strong emphasis on beauty, good health, and accomplishment. The concept of stigma is discussed, and major sources of the creation of stigma for affected persons—family, school, workplace, and medical interactions—are described, and positive modes of coping with stigma are proposed.
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Notes
- 1.
Research participants were recruited from support groups sponsored by the National Neurofibromatosis Foundation, Inc.—now renamed the Children’s Tumor Foundation—and the now historical California Neurofibromatosis Network. Currently, there are also groups supported by Neurofibromatosis, Inc., California. Fifty-four affected adults were interviewed, 32 were women and 22 were men. Fifteen had a parent with NF1. Twenty had affected children. Ten persons were members of ethnic minorities: five Hispanics, three African-Americans, one Chinese, and one Filipino. Ages of subjects ranged from 19 to 70 at the time of the first interview. Educational levels varied from completion of high school to enrollment in doctoral level graduate courses. The occupations of subjects were so diverse that their number almost equaled the number of subjects. Vocations ranged through professionals, laborers, retirees, and persons living on temporary and permanent disability benefits.
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Acknowledgment
I am very appreciative of the support of the National Science Foundation (Grant No. BN58819633) and an Academic Senate Research Grant from the University of California, San Francisco, which enabled me to carry out the field research on which this chapter is based.
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Ablon, J. (2012). Social Stigma in Neurofibromatosis 1. In: Upadhyaya, M., Cooper, D. (eds) Neurofibromatosis Type 1. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32864-0_42
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