Disability justice

20 de April, 2023

Disability, inability and vulnerability: on ableism or the pre-eminence of ableist and biomedical approaches of the Human Subjects Ethics Committee of the Federal University of Santa Catarina (Deficiência, incapacidade e vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC), 2016.

Anthropology has increasingly questioned the hegemony of biomedical knowledge in ethical review processes of social research projects prevailing in Brazil, which was regulated until 2012 by the Human Research Ethics Committee of each institution, under the regulation of the National Research Ethics Commission (CONEP). This was established by Resolution No. 196/1996, in effect in 2012, when this field research was conducted. The scope of this study is to recount and reflect upon the barriers to obtaining approval in 2012 for my master’s research project from the Human Research Ethics Committee of the Federal University of Santa Catarina (CEP/UFSC), in Florianópolis, Brazil. In this ethnographic experience, in the light of crip theory, I observed how the “disability,” “vulnerability” and “inability” categories are articulated to reveal the ableism and the primacy of the biomedical model in the case of an ethics review at UFSC regarding the participation and legal capacity of persons with disabilities as subjects of research.

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