Garden Rebecca
Bioethics and Humanities, Upstate Medical University, 618 Irving Avenue, Syracuse, NY 13210, USA.
Perspect Biol Med. 2010 Winter;53(1):121-35. doi: 10.1353/pbm.0.0135.
Autobiographical narratives of illness and disability are influential in popular and medical discourses of illness and disability, in part because these narratives represent illness and disability within a sociocultural context, intersecting with other categories of difference. Clinicians can benefit patients through a critical understanding of the formal and social conventions that shape illness and disability narratives and the effect these conventions can have on the lived experience of illness and disability. I analyze the 2003 edition of Lucy Grealy's Autobiography of a Face to illustrate these socio-narrative conventions, especially in light of an afterword that significantly revises the ending to Grealy's narrative. I explore the parallels between narrative conventions-such as the "recovery narrative"-and caregivers' expectations that shape the role of the "good patient," as well as the resistance to conventions of closure, represented by the "renegotiated ending."
疾病与残疾的自传式叙述在关于疾病与残疾的大众话语和医学话语中具有影响力，部分原因在于这些叙述在社会文化背景中展现疾病与残疾，并与其他差异类别相互交织。临床医生若能批判性地理解塑造疾病与残疾叙述的形式和社会惯例，以及这些惯例对疾病与残疾生活体验可能产生的影响，就能造福患者。我分析了露西·格里利2003年版的《脸的自传》，以阐释这些社会叙事惯例，尤其是鉴于一篇后记对格里利叙述的结尾进行了重大修改。我探讨了诸如“康复叙事”等叙事惯例与塑造“好患者”角色的护理人员期望之间的相似之处，以及由“重新协商的结局”所代表的对结局惯例的抵制。
