1,720,966 research outputs found
A call for a broader citizenship : parent-led autism advocacy movement in Portugal
No full textTese de doutoramento, Antropologia (Antropologia da Saúde), Universidade de Lisboa, Instituto de Ciências Sociais, 2018This 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
"Hoje melhor que ontem, amanhã melhor que hoje": entre práticas de aprimoramento, busca de excelência e ética da produtividade
No full textAs tecnologias de aprimoramento humano – em inglês, enhancement
technologies – referem-se a um conjunto de técnicas e produtos biomédicos
usados para melhorar determinadas características e capacidades
humanas. Ao longo das últimas décadas, o uso deste conjunto de tecnologias
– desde a cirurgia plástica estética e a psicofarmacologia até aos
implantes e exosqueletos – representa uma tentativa de alterar determinadas
características do ser humano de forma a expandir os seus limites e
promover assim o seu desempenho físico e cognitivo. Os avanços da
medicina estética, da psicofarmacologia e da nanotecnologia impulsionaram
a oferta de técnicas e produtos com fins de aprimoramento e este
sector de mercado tornou-se um dos mais ativos e rentáveis da mais ampla
indústria do bem-estar (Elliott 2003). O seu sucesso, porém, deve-se não
apenas a uma maior variedade de técnicas e produtos disponíveis no
mercado e a maior popularização destas intervenções graças à prática de
preços bem mais acessíveis do que no passado, mas também a uma maior
procura.info:eu-repo/semantics/publishedVersio
Bodies that never grow: How psychiatric understanding of autism spectrum disorders affects autistic people's bodily experience of gender, ageing, and sexual desire
No full textThis paper investigates the intersections of gender, sexuality, ageing in the way autism spectrum disorder is
medically described as a discrete category. On one hand, the construction of autism as a male-centric phe-
nomenon results in a significant gender gap in autism diagnosis, with girls diagnosed with autism significantly
less and later than boys. On the other hand, the focus on depicting autism as a pediatric condition exposes adult
autistics to discriminatory practices such as infantilization and contributes to the disregard of their sexual desires
or to the misconception of their sexual behaviors as dangerous or inappropriate. Both infantilization and the
supposed inability of autistic people to “fit” into adulthood have a significant impact on both sexuality’s ex-
pressions and ageing experiences. My study suggests how fostering knowledge and further learning on the
infantilization of autism can bring important insight into understanding disability from a critical angle. By
challenging normative notions of gender, ageing, and sexuality, autistic people’s different bodily experiences
question medical authority and social politics and criticize the public representation of autism in the broader
social space.info:eu-repo/semantics/publishedVersio
Feelings in the Field: The Emotional Labour of the Ethnographer
No full textDespite the recent theoretical debate over the importance of addressing emotions
in fieldwork, most European undergraduate programmes in anthropology still lack methodology
courses that specifi cally focus on the emotional impact of doing research. In this article,
I draw from my research with activist parents of autistic children in Portugal to explore the
affective dimensions of fieldwork experience. In particular, I give an account of how I have
dwelled on the emotional challenges that I faced, how these have resulted in vehicles of
understanding and affected the analysis of my work as an anthropologist. While fieldwork
experience always entails unexpected and surprising emotional challenges, I argue that as
anthropologists we can surely benefit from more tailored support networks, safer spaces for
discussion, and better pastoral care.info:eu-repo/semantics/publishedVersio
Social media, beauty standards and the discriminatory bias in body transformation practices: a commentary on why posthuman thinking matters
No full textIn “We post-humans: from genesis to freedom”, Pussetti critically reflects on the meaning of what we can understand today as “human” following, in particular, the growing use of medical biotechnologies (such as endocrinology, genetic engineering, cosmetic surgery, and dermatology) for betterment purposes. While the history of the human species has always been accompanied by practices of body transformation due to humans’ inherent aspiration and tension to construct, alter and improve their own selves, the contemporary proliferation of less invasive and low-cost cosmetic procedures has provided us incredible chances of transform-ability and new opportunities of “molding” the body we would like to have. Drawing from Remotti’s1 concept of anthropo-poiesis, which indicates the various processes of self-construction of the individual particularly from the point of view of body modification, Pussetti argue that we are actively engaged in a continuous process of self-construction thanks to socialization, acculturation, and our deliberate practices of body modifications. A feeling of incompleteness spurs our imagination and drives us to creatively explore new ways of being and aspire to ideals we are encouraged to meet, responding to the economic demands and socio-cultural expectations of the society we live in. Taken in a dialogical relationship, we alter our body and self in a continuous process of adaptation to, reinvention of, and resistance to the world around us. The idea according to which we have always been posthuman - not only because of our intimate and mutual relationship with our non-human others but first and foremost because we are always moving towards a future vision of ourselves - is not new.info:eu-repo/semantics/publishedVersio
Fathers of children with autism: for a cha(lle)nging visual representation of fatherhood and masculinity
No full textA growing field of critical studies about fatherhood and masculinity[2] has recently shown
how nowadays – at least in the so-called Western countries – fathers are no longer mere
breadwinners and outdoor adventurers but supportive caregivers too. Despite the
perception of masculinity and fatherhood is gradually changing, this cultural shift is not
yet mirrored enough across the wider social and media culture we consume. How the
media portrays fathers and masculinity and how does this reinforce stereotypes? In TV
shows and movies, fathers are often two-dimensional. They are clumsy, funny dads,
making jokes and silly faces, acting stupid, being awkward or on the contrary strong
adventurous alpha-fathers. These descriptions underestimate the importance of
fatherhood in general and reinforce larger stereotypes about uninvolved or incompetent
fathers. Also, it not common to see disabled, non-white, or non-heterosexual fathers in
the media. This representation of fatherhood is really detrimental in the long term, as it
negatively affects the public opinion and those fathers who lack positive fathering role
models. It also shows a poor recognition about how many fathers, unlike previous
generations, are nowadays trying to be more involved in nurturing, loving, supporting and
raising their children.info:eu-repo/semantics/publishedVersio
A call for a broader citizenship : parent-led autism advocacy movement in Portugal
No full textTese de doutoramento, Antropologia (Antropologia da Saúde), Universidade de Lisboa, Instituto de Ciências Sociais, 2018This 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
"Hoje melhor que ontem, amanhã melhor que hoje": entre práticas de aprimoramento, busca de excelência e ética da produtividade
No full textAs tecnologias de aprimoramento humano – em inglês, enhancement
technologies – referem-se a um conjunto de técnicas e produtos biomédicos
usados para melhorar determinadas características e capacidades
humanas. Ao longo das últimas décadas, o uso deste conjunto de tecnologias
– desde a cirurgia plástica estética e a psicofarmacologia até aos
implantes e exosqueletos – representa uma tentativa de alterar determinadas
características do ser humano de forma a expandir os seus limites e
promover assim o seu desempenho físico e cognitivo. Os avanços da
medicina estética, da psicofarmacologia e da nanotecnologia impulsionaram
a oferta de técnicas e produtos com fins de aprimoramento e este
sector de mercado tornou-se um dos mais ativos e rentáveis da mais ampla
indústria do bem-estar (Elliott 2003). O seu sucesso, porém, deve-se não
apenas a uma maior variedade de técnicas e produtos disponíveis no
mercado e a maior popularização destas intervenções graças à prática de
preços bem mais acessíveis do que no passado, mas também a uma maior
procura.info:eu-repo/semantics/publishedVersio
“The Times, They Are a-Changing”: Entrevista com João Pina Cabral, por Maria Concetta Lo Bosco
No full textinfo:eu-repo/semantics/publishedVersio
“The Times, They Are a-Changing”: Entrevista com João Pina Cabral, por Maria Concetta Lo Bosco
No full textinfo:eu-repo/semantics/publishedVersio
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