Leonard Lori, Ellen Jonathan M
Department of Health, Behavior and Society, Johns Hopkins School of Public Health, 624 N. Broadway, Room 257, Baltimore, MD 21205, USA.
Qual Sociol. 2008;31(1):37-56. doi: 10.1007/s11133-007-9086-5.
Talk and 'telling' have assumed prominent roles in preventing HIV and promoting life with the disease at the start of the twenty-first century. Our concern in this paper is to show how social structures and circumstances shape the narrative productions of HIV positive patients whose lives are institutionally managed. We consider what 'telling' means when young women with few economic resources are encouraged or mandated to talk about themselves by case managers, researchers, therapists, welfare workers, and clinic staff. We organize our analysis around three such 'autobiographical occasions': disclosures to intimate partners prompted by agents of the state; employment opportunities in which women are hired to tell others about living with HIV as peer educators or outreach health workers; and research interviews. We argue that storylines about living with HIV have been laid down by powerful social actors whose illness experiences do not reflect those of many poor patients. These formulations constitute an 'archive' which organizes institutional practices and discourses. These matter not only because they provide patients with a language through which to render their actions meaningful, but because they shape the everyday experience of HIV outside the clinic, the welfare office, and the therapy session.
在21世纪初,谈话和“讲述”在预防艾滋病病毒以及促进与这种疾病共存的生活方面发挥了重要作用。我们在本文中关注的是展示社会结构和环境如何塑造那些生活受到机构管理的艾滋病病毒阳性患者的叙事作品。我们思考当经济资源匮乏的年轻女性被个案管理员、研究人员、治疗师、福利工作者和诊所工作人员鼓励或要求讲述自己的情况时,“讲述”意味着什么。我们围绕三个这样的“自传场合”来组织分析:因国家机构人员的推动而向亲密伴侣透露病情;女性受雇作为同伴教育者或外展健康工作者向他人讲述感染艾滋病病毒后的生活经历的就业机会;以及研究访谈。我们认为,关于感染艾滋病病毒后生活的故事情节是由强大的社会行为者设定的,而他们的患病经历并不能反映许多贫困患者的经历。这些表述构成了一个“档案库”,它组织着机构实践和话语。这些不仅重要,因为它们为患者提供了一种语言,通过这种语言使他们的行为变得有意义,而且因为它们塑造了诊所、福利办公室和治疗 session 之外艾滋病病毒的日常体验。