Intellectual Disabilities, Care, and Adulthood in Brazil

In Brazil, recent policies have encouraged the autonomy and independence of adults with intellectual disabilities. Yet, these policies often conflict with care policies and practices centered on families, particularly mothers, while adults with disabilities live at home. Based on fieldwork with mothers of adults with intellectual disabilities in southern Brazil, this talk explores paradoxes in the entanglement of care, inclusion, and autonomy. The speaker, Helena Moura Fietz, proposes the term “autoconstruction of care” to emphasize the responsibility disabled people and their families take on in building services that promote social inclusion. Considering how living arrangements are central to processes of citizenship-making in Brazil and the ableist structures in which the autoconstruction of care is embedded, Fietz argues this process can reinforce the segregation it seeks to avoid. By looking at autoconstruction of care, Fietz suggests we can better understand how policies that aim to promote the autonomy of disabled people can become ineffective -- even harmful -- unless accompanied by infrastructures of care.

Helena Moura Fietz is an assistant professor of anthropology at Louisiana State University. She received her PhD in sociocultural anthropology at the Federal University of Rio Grande do Sul in Brazil. Her research spans medical anthropology, feminist science, and technology studies, as well as critical disability studies focused on health inequities and infrastructures of care in the US and Brazil.

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