‘It is not the State's fault that we have a person like this’: relations, institutions and the meaning of ‘rights’ to carers of People with Psychosocial Disabilities in Chile

Abstract

Background.The UN Convention on the Rights of Persons with Disabilities (CRPD) has been adopted by national governments to advance the interests and wellbeing of people with psychosocial disabilities (PPSD). It is often assumed that the adoption of a ‘rights’ framework will advance the dignity and autonomy of PPSD. However, little is known about how families and communities understand ‘rights’. The present paper, based on research conducted in Santiago, Chile, takes a contextual approach to rights, asking: How do family carers of PPSD understand and use the idea of ‘rights’? How does the context of caregiving shape families’ understanding of rights?Methods.Four focus groups were conducted with a total of 25 family carers (predominantly mothers) of people diagnosed with schizophrenia and other severe neuropsychiatric conditions. Thematic analysis was conducted.Results.Carers’ experience of caregiving was marked by isolation, stigmatization, a lack of support and mistreatment by public services. Their family networks did not provide sustained help and support, and the public services they had used were characterized by scarce resources and inadequate support. Carers did not refer to rights of dignity or autonomy. Given an unsupportive context, and worries about who would care for their child after the carer's death, their primary interest in ‘rights’ was a right to guaranteed, long-term care. While carers endorsed the idea of universal, state-supported rights, appeals to compassion and the exchange of favours were spoken of as the most effective strategies for gaining a minimum level of services and support.Conclusions.Carers’ understandings, framed against a background of unmet needs and shaped by a history of unsatisfactory interactions with services and institutions, do not resonate with the principles of the CRPD. We suggest an expanded, relational struggle for rights that acknowledges the role of families and the tensions surrounding the distribution of rights within the family.