'Orange in a World of Apples': the voices of albinism

Albinism is a rare genetic condition that affects the pigmentation of the retina, hair and skin. Consequently, people with albinism world-wide experience the stigma and negative repercussions of an unconventional physical appearance, as well as a visual impairment. The medical literature has focused extensively on the genetics of albinism amongst animals, but it has been relatively under-studied and ignored in sociology. People with albinism have rarely had the opportunity to tell their stories; to tell their sorrows and their triumphs. This paper attempts to remedy this failure in social science.

In-depth interviews were conducted with seven women and five men, living in various countries globally. The study is framed around Erving Goffman's theory of stigma and 'spoiled identity', as well as the more recent Disability Studies that stresses 'the normals' as being the 'identity spoilers' or the 'problem'. The participants revealed victimisation from various sources including students, teachers, employers, colleagues, strangers and the medical profession. Focus is placed on the strategies that respondents have devised in coping with these adversities. The results identify eight principal methods of reaction and response to the discrimination against people with albinism.

These eight different strategies of resistance to the stigmatisation of albinism are essential elements of personal change and even, possibly, social change. This paper quotes respondents' own words. Such methodology offers the chance for people with albinism to voice their experiences, and for us researchers to listen and learn.