The present article explores the quality of life of adolescents with spina bifida at the Children's National Medical Center in Washington DC. The research is based on a qualitative perspective that utilizes the "Theory of stigma" as the central theoretical framework, in addition to the discussions of the concept of quality of life and its dimensions. Fifteen adolescents were interviewed at the above institution, eight of which then participated in a focal group structured through issues that emerged during this previous phase. The discourses reflected the need for more encompassing categories for quality of life that do not pulverize the life experience. The adolescent's discourses demonstrate an inequality structure in interactions between the healthy and the disabled. The results demonstrated that stigma permeates all life dimensions of these subjects, interfering in their social inclusion, as well as in their subjective construction and self-esteem, asserting the role of the disabled as a "non-person". Finaly, we found that even though sexuality was not prioritized in other instruments that contemplate this population, the theme emerges as central to the discussion of their life experiences.
Quality of life; Stigma; Adolescence; Disability