Media activism and Internet use by people with HIV/AIDS

Abstract

This paper seeks to understand better the media practices of people who are directly affected by an illness or health problem. Internet sites that have been created by people with HIV/AIDS are examined as a strategy for self-representation. This analysis identifies four prominent 'organising themes' in Internet sites: autobiography; expertise; self promotion; and dissent. It is argued that there is a connection between media activism within the contemporary AIDS movement and Internet use among people with HIV/AIDS. This paper discusses the potential of the Internet, as a form of media activism, to raise the private troubles of people with health problems as public issues through a revitalisation of the public sphere in contemporary post-industrial societies.

A construção do diagnóstico do autismo em uma rede social virtual brasileira

“…A proposição de projetos de lei de proteção à pessoa autista, ainda que pouco expressiva, também aparece. Essa tendência dos dados analisados está em consonância com a literatura internacional que aponta a organização de pacientes em meio virtuais em prol de seus direitos civis, o que configura uma nova modalidade de ativismo em saúde (Barker, 2008;Epstein, 2008;Gillet, 2003;Chamak, 2008).…”

“…Essas são apenas tendências para aonde apontam os dados, sendo importante lembrar que esse é um campo de investigação ainda inicial no Brasil, o que revela 10 A esse respeito, dados internacionais corroboram essa tendência encontrada nos dados analisados (Barker, 2008;Bromm, Tovey, 2008;Fox et al, 2005a;Gillet, 2003;Blumenthal, 2002;Hardey, 1999 …”

“…A pesquisa sobre o impacto da internet na experiência de portadores de doenças -sobretudo aquelas envoltas em incertezas quanto à etiologia -é assunto em plena expansão no campo do conhecimento sociológico em saúde (Conrad, Stults, 2010;Barker, 2008;Bromm, Tovey, 2008;Miah, Rich, 2008;Schaffer, Kuczynski, Skinner, 2008;Berger, Wagner, Baker, 2005;Broom, 2005;Fox, Ward, o'Rourke, 2005a, 2005bSeale, 2005;Gandchoff, 2004;Gillet, 2003;Blumenthal, 2002;Hardey, 1999).…”

Constructing publics, preventing diseases and medicalizing bodies: HIV, AIDS, and its visual cultures

“…Focusing on the graphic depiction of the most extreme cases of the disease can fuel the identification of the risk of infection with moral danger (Lupton, 1994). However, the via negationis portrayal of the seropositive patient in medical brochures compounded with the public visibility of AIDS when it was deemed to be an important international news item in the late 1980s and early 1990s (Gillett 2003). Both contradictory accounts (visually healthy people as the focus of prevention; activists and patients bearing visible stigmata) complemented each other in constructing a subject who had to go through defined stages: a newly diagnosed asymptomatic seropositive person, a patient visibly affected by the disease or by the side effects of medicine such as stavudine or zidovudine, and the person dying of total immune failure.…”

Le trouble déficitaire de l’attention avec hyperactivité

“…Modalités du diagnostic, description des différents critères du trouble, veille scientifique, conseils psychoéducatifs, etc., le site internet de l'association offre aux familles une grande quantité d'informations. Ces dernières peuvent également trouver les coordonnées téléphoniques d'un bénévole près de chez eux ou encore échanger leurs expériences sur le forum de discussion conçu comme un réseau d'expression, d'expertise, d'autopromotion et de contestation [10]. Le rôle du forum et des bénévoles, répartis sur presque tout le territoire, est particulièrement important.…”