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

我的项目出现在惠康收藏2019年的展览“行为不当的身体”中，该展览展出了Jo Spence 1982-92年的摄影作品，以及跨学科艺术家Oreet Ashery的当代作品。围绕斯宾塞的《最后的计划》（the Final Project, 1991-2）的文化叙事有一个缺口，这是艺术家死于白血病时创作的，我有亲身经历。斯宾塞早期的纪实摄影作品（1982- 1990）因其在重塑乳腺癌患者叙事方面的政治效用而受到称赞，而她的白血病作品则过于简单化了。安妮·博耶（Anne Boyer）在解释《最后的计划》（the Final Project）的唯一突出叙述中指出，斯宾塞通过将自己隐没在风景中或作为一具骨架来教自己一种内心死亡的语言。博耶继续反驳这一叙述，他提出疾病政治的“新领域”被“暴露”，因为先前通过斯宾塞的身体表达的身份开始消失（2016）。然而，这一“新领域”仍然完全没有被探索过，以前的叙述占据了优先地位。萨曼莎·金（2006）和芭芭拉·埃伦赖希（2001）都指出了乳腺癌慈善活动所宣扬的女性化和婴儿化患者叙事的失败。为了弥补这些叙述的局限性，我将重新审视博耶提出的疾病政治的“新领域”。在此过程中，我认为将患者的身体从疾病叙述中移除（出于疲惫等原因）为更包容地表达癌症患者铺平了道路，减少了对性别或预后的依赖。博耶的疾病回忆录《不死》（2019）进一步证明了在身体之外表达危重疾病的有效性，因为博耶把自己当作一个鬼魂来探索。因此，我将分析“最终项目”和“不朽”作为开创性的案例研究，探索在典型的表现约束之外出现的耐心叙事。我的术语“后身份患者”指的是在疾病叙事中对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，而博耶重新诠释了它的实践。我将通过回答以下研究问题来测试后身份患者的有效性：斯宾塞和博耶如何将他们的疾病概念化，超越身份？这种概念化对危重症/绝症的主流表征提供了什么？身份认同后的耐心如何为LGBTQ+社区提供一个更具包容性的空间？在疾病话语中，如何重新想象/移除不健康的身体更有效地代表患有严重/晚期癌症的人？受斯宾塞的中间实践和博耶对比较文学的运用的启发，我将采用一种创造性的方法来解决这些问题。这将包括文学的自我理论和美学批评，由乔治·巴塔耶的哲学概念所推动，灰尘是一种工具，用来构思肉体形式的毁灭和身份的毁灭。我的研究将采取一种自动理论比较研究的形式，对斯宾塞的自传体写作和艺术作品《把我自己放在画面里》(1986)/《文化狙击》（1995）和《最后的项目》与博耶的《不死》进行比较。我将继续与几位著名的酷儿/女权主义者密切对话，讲述他们的癌症经历（塞奇威克1999年；洛德2020年；贾因2013年）。这种方法将避免斯宾塞所批评的身体表征，即没有理论家“以任何方式似乎居住在自己的身体中”（1995）。该项目拆除了控制癌症表现的普遍主义范式，为女性主义理论和医学人文学科做出了独特的贡献。在建立一个包容跨性别和性别非二元群体的患者模型的过程中，这项研究对新兴的酷儿/跨性别理论以及对疾病的社会学反思都很重要。

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.