Post-Identity Patienthood in the cancer narratives of Jo Spence and Anne Boyer

我的项目来自Wellcome Collection 2019年的展览《行为不端的身体》，该展览展出了乔·斯宾塞1982-92年的摄影作品，以及跨学科艺术家奥利特·阿什里的当代作品。斯宾塞的《最后的计划》(The Final Project，1991-2)是在斯宾塞死于白血病(我亲身经历过的一种疾病)的时候创作的，围绕这部作品的文化叙事存在一个空白。斯宾塞早期的纪实摄影(1982-90年)因其在重新想象乳腺癌患者的故事方面的政治用途而受到称赞，但她的白血病作品过于简单化。安妮·博耶是唯一一个用来解读《最后的计划》的突出叙事，她认为，斯宾塞通过展示自己逐渐消失在风景中或骨骼中，正在教自己一种死亡的语言。博耶接着反驳了这一叙述，他提出，随着先前通过斯宾塞身体表达的身份开始消失(2016)，疾病政治的“新领域”被“暴露”。然而，这一“新领域”仍然完全没有被探索，前一种叙事已经占据了主导地位。萨曼莎·金(2006)和芭芭拉·埃伦瑞克(2001)都发现，乳腺癌慈善活动所倡导的女性化和婴儿化的病人叙事是失败的。为了弥补这些叙述的局限性，我将重温博耶提出的疾病政治的“新领域”。在这样做的时候，我会争辩说，将病人的身体从疾病叙述中移走(由于疲惫等原因)。为更全面地表达癌症患者的身份铺平了道路，减少了对性别或预后的依赖。博耶的疾病回忆录《不死》(2019年)为在身体之外表达危重疾病的有效性提供了进一步的证据，因为博耶将自己探索为一个幽灵。因此，我将分析《最后的项目》和《不死》，作为先驱案例研究，探索在典型表现限制之外出现的耐心叙事。我的术语‘后身份耐心’将指的是疾病叙事中性别身体的重新想象/移除；我认为斯宾塞的艺术概念化了这一点，博耶重申了它的实践。我将通过回答以下研究问题来测试身份认同后患者身份的有效性：斯宾塞和博耶如何将他们的疾病概念化？这种概念化为危重/绝症的显性表现提供了什么？后身份患者身份如何为LGBTQ+社区提供一个更具包容性的空间？如何重新想象/移除不适的身体，如何在疾病话语中更有效地代表危重/晚期癌症患者？我将采用一种创造性的方法来解决这些问题，灵感来自斯宾塞的中介实践和博耶对比较文学的运用。这将包括文学自体理论和美学批评，这是由乔治·巴塔耶的哲学观念所促成的，他认为灰尘是一种工具，用来构思身体形式的消灭和身份的破坏。我的研究将采取自我理论比较的形式对斯宾塞的自传体写作和艺术作品《把我自己放在图画中》(1986)/《文化狙击》(1995)和《最后的项目》与博耶的《不死》进行比较。我将始终与几位著名的同性恋/女权主义者对癌症生活经历的描述保持密切对话(Sedgwick 1999；Lorde 2020；Jain 2013)。这种方法将避免斯宾塞所批评的没有理论家的身体的表现，(1995)。这个项目拆除了控制癌症表现的普遍主义范式，为女权主义理论和医学人文科学提供了独特的贡献。在开发包含变性人和性别非二元社区的患者身份模型方面，这项研究对于新兴的同性恋/变性人理论以及对疾病的社会学思考具有重要意义。

My project emerged from the Wellcome Collection's 2019 exhibition 'Misbehaving Bodies', which exhibited Jo Spence's photography from 1982-92 alongside contemporary work by interdisciplinary artist Oreet Ashery. There is a gap in the cultural narratives around Spence's 'The Final Project' (1991-2), made while the artist was dying from leukaemia, a disease with which I have firsthand experience. Where Spence's earlier documentative photography (1982-90) has been praised for its political usefulness in reimagining narratives of breast cancer patienthood, her leukaemic works are oversimplified. In the only prominent narrative used to interpret 'The Final Project', Anne Boyer suggests that Spence is teaching herself a language to die within by showing herself fading into landscapes or as a skeleton. Boyer goes on to contradict this narrative by proposing that a "new ground" for illness politics is "exposed" as identity, previously expressed through Spence's body, begins to fall away (2016). However, this "new ground" remains entirely unexplored and the former narrative has taken precedence.Both Samantha King (2006) and Barbara Ehrenreich (2001) have identified failures in the feminized and infantilized patient narratives pedalled by breast cancer charity campaigning. To remedy the restrictiveness of these narratives, I will revisit Boyer's proposed "new ground" for illness politics. In doing so, I will argue that the removal of the patient's body from illness narratives (for reasons of exhaustion etc.) paves the way for more inclusive expressions of cancer patienthood, less reliant on gender or prognosis. Boyer's illness memoir, The Undying (2019), provides further evidence for the effectiveness of expressing critical illness beyond the body, for Boyer explores herself as a ghost. I will therefore analyse 'The Final Project' and The Undying as pioneering case studies that explore narratives of patienthood emerging outside the typical constraints of representation. My term 'post-identity patienthood' will refer to the reimagination/removal of the gendered body in illness narratives; I argue that Spence's art conceptualises this and Boyer reinscribes its practice. I will test the efficacy of post-identity patienthood by answering the following research questions:How do Spence and Boyer conceptualise their illnesses beyond identity? What does this conceptualisation offer to dominant representations of critical/terminal illness? How can post-identity patienthood offer a more inclusive space for LGBTQ+ communities?How can the reimagination/removal of the unwell body more effectively represent people with critical/terminal cancers in illness discourses?I will adopt a creative methodology to approach these questions, inspired by Spence's intermedial practice and Boyer's employment of comparative literature. This will consist of literary auto-theory and aesthetic criticism, enabled by Georges Bataille's philosophical notion of dust as a tool for conceiving the obliteration of bodily form and the destruction of identity. My research will take the form of an auto-theoretical comparative study of Spence's autobiographical writing and artwork in Putting Myself in the Picture (1986)/Cultural Sniping (1995) and 'The Final Project' alongside Boyer's The Undying. I will remain in close dialogue with several prominent queer/feminist accounts of lived cancer experience throughout (Sedgwick 1999; Lorde 2020; Jain 2013). This method will avoid what Spence criticises as the representation of bodies without theorists "in any way seeming to inhabit their own" (1995).This project dismantles the universalistic paradigms controlling cancer's representation, offering unique contributions to feminist theory and the medical humanities. In developing a model of patienthood inclusive of transgender & gender non-binary communities, this study is important for emerging queer/transgender theory, as well as sociological reflections on illness.