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A call for a broader citizenship : parent-led autism advocacy movement in Portugal
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This thesis is about Portuguese parents of children diagnosed with Autism Spectrum Disorders (from now on ASDs), defined as a set of neurodevelopmental disorders characterized by impairments in social interaction and communication skills and by rigid and repetitive patterns of behaviour (American Psychiatric Association 2013). It aims at understanding parents’ caregiving experiences and expectations regarding their children’s future, and at exploring their advocacy day-to-day practices and actions, and socio-political demands. I address, in particular, the ways in which parents use social media to deploy a different understanding of autism and to advocate for their children’s rights in order to challenge misleading and disabling stereotypes. My fieldwork, indeed, focused particularly on parent-led online communities - namely Internet based social networks (like Facebook) - where parents produce discourses about autism, share their experiences as caregivers, claim recognition for their knowledge, and call for their children’s health and educational services. Support and advocacy online groups serve as collective platforms for parents to share what it means to be a parent to a child with autism and to confront themselves about the decisions they make when caring for their children, to interact with other parents and create relationships and friendship, as well as to deploy their expert knowledge. Social media, as technological tools and spaces, can entail the potential of mobilization, insofar as they offer an opportunity for people to claim for social change by sensitizing and encouraging others to take action. For these reasons, online autism advocacy proves, in my view, to potentially bolster parents to gain attention and visibility regarding disability issues, social discrimination and marginalization. I also investigate the impact of autism in parent’s lives and explore the gendered practices of caregiving and advocacy within the family environment, as well as parents’ ideas about diversity, inclusion, and citizenship.
Descrição
Tese de doutoramento, Antropologia (Antropologia da Saúde), Universidade de Lisboa, Instituto de Ciências Sociais, 2018
Palavras-chave
Teses de doutoramento - 2018