Cultures, Communities and Connections in the HIV Sector: Linking Academics, HIV Advocates/Activists, Clinicians, and the Digital Humanities

当它在20世纪80年代初首次出现时，艾滋病毒/艾滋病主要发生在美国的男同性恋社区。现在，艾滋病毒/艾滋病是一种真正的全球性流行病，在广泛的种族、性别、年龄和性群体中蔓延。此外，1995年引入的有效药物将艾滋病毒从一种典型的致命疾病转变为一种“可控制”的疾病。这些发展意味着我们不能再谈论“艾滋病毒社区”。相反，在全球范围内，有艾滋病毒感染者，也有医生和卫生机构；地方、国家和国际卫生和政府组织；以及艾滋病活动家/倡导者，他们组成了不同规模和复杂程度的社区，共同构成了一个艾滋病部门。这种复杂性决定了该部门在保持其独特文化和声音的同时，试图将这些社区联系起来。因此，将不同的社区联系起来，是关注艾滋病毒/艾滋病的一系列复杂团体和组织的积极目标。然而，探索当今艾滋病领域的文化、社区和联系的学术研究几乎是不存在的。为了填补这一空白，我们计划将学者、临床医生和艾滋病毒活动家/倡导者（其中一些人感染了艾滋病毒）聚集在一起，以更好地了解：这些不同的反应如何结合在一起创建一个全球“健康社区”；是什么构成了艾滋病毒部门；这些不同的社区、专业和组织如何相互联系，以及这些联系和关系如何影响受艾滋病毒影响的社区；以及生活在特定社区和/或跨越不同社区的PLWH意味着什么。为了探讨这些问题，我们还将考虑艾滋病毒部门如何因应新药物的出现和新感染艾滋病毒的人群而发生变化。了解这些变化可以增加我们对疾病分布和科学发展对与特定健康状况有关的其他社区的影响的认识。我们的目的和目标是：使在艾滋病毒部门和学术界工作的一系列行为者能够相互联系，以便他们能够更好地研究艾滋病毒部门和更广泛地研究具体的卫生部门。更好地了解因单一卫生危机而联系在一起的不同社区如何相互联系和联系。考虑将社区联系起来如何可能使艾滋病毒部门以及受卫生或其他危机影响的任何社区受益。计划活动：在18个月的时间里，我们将举办5场研讨会，国内外学者将在研讨会上展示他们的研究成果，并根据研讨会成果撰写一系列学术论文。让学者和在艾滋病毒领域工作的人参与撰写这些文章将是一个关键目标。在项目结束时，该网络将向艾滋病毒社区团体展示其主要发现。我们还将建立一个网络专用网站，发布我们的主要调查结果、可下载的社区报告，并在可能的情况下提供研讨会演讲的幻灯片。核心成员来自一系列艾滋病毒专家（学者、临床医生和活动家/倡导者）、人文和数字人文学者以及专门从事健康和健康经验的学者，他们将参加并有时领导研讨会，讨论演讲，并帮助将网络的研究结果提供给更广泛的学术和艾滋病毒社区。我们拟举办的5场研讨会将探讨艾滋病毒领域的社区和叙事之间的联系；通过纪念艾滋病毒/艾滋病受害者和/或利用互联网和其他数字媒体将社区联系起来；以及艾滋病毒临床医生和活动家在联系艾滋病毒社区方面的作用。研讨会将在基尔大学、索尔福德大学和伦敦市中心举办，英国和国际学者和艾滋病活动家/倡导者将发表演讲。

When it first emerged in the early 1980s, HIV/AIDS was primarily located in the USA's gay male communities. Now, HIV/AIDS is a truly global pandemic, spread across a wide range of ethnic, gender, age, and sexual groups. Moreover, effective medications introduced in 1995 changed HIV from a typically fatal condition to a 'manageable' one. These developments mean that we can no longer speak of 'the HIV community'. Instead, across the globe, there are people living with HIV (PLWH), along with medical practitioners and health agencies; local, national and international health and governmental organisations; and HIV activists/advocates, who form communities of varying sizes and complexities and which, together, make up an HIV sector. This complexity shapes this sector's attempts to connect these communities whilst maintaining their distinctive cultures and voices. Connecting diverse communities is, thus, the active goal of a complex set of groups and organisations concerned with HIV/AIDS. Yet scholarship exploring the cultures, communities and connections within today's HIV sector is virtually non-existent. To fill this gap, we plan to bring together scholars, clinicians, and HIV activists/advocates, some of whom live with HIV, to better understand:How these different responses come together to create a global 'health community'; what makes up the HIV sector; how these different communities, professions and organisations interrelate, and how these connections and relationships impact on HIV-affected communities; and what it means to be a PLWH living in a particular community and/or spanning different ones.To explore these questions, we will also consider how the HIV sector changed in response to the emergence of new medications and new populations infected by the virus. Understanding these changes could increase our knowledge of the impact of disease distribution and scientific developments on other communities linked by a particular health condition. Our aims and objectives are to:Enable a range of actors working in the HIV sector and in academia arenas to connect with each other so that they can conduct better research into the HIV sector and into specific health sectors more generally.Better understand how different communities, connected by a single health crisis, relate to and connect to one another. Consider how connecting communities may benefit the HIV sector, and indeed any communities affected by health or other crises.Proposed Activities: Across the course of 18 months, we will hold 5 seminars, at which national and international scholars will present their research, and produce a series of academic papers based on the seminars. Including academics and people working in the HIV sector in writing these articles will be a key goal. At the project's end, the network will present its main findings to HIV community groups. We will also build a network-dedicated website, and post our main findings, a downloadable community report and, when possible, power points of seminar presentations. The core members, drawn from a range of HIV specialists (academics, clinicians, and activists/advocates), humanities and digital humanities scholars, and academics specialising in health and health experiences, will attend and sometimes lead the seminars, discuss the presentations, and help with making the network's findings available to the wider academic and HIV communities. Our 5 proposed seminars will explore inter/connecting communities and narratives in the HIV sector; communities connecting by commemorating those lost to HIV/AID and/or by using the internet and other digital media; and the role of HIV clinicians and activist in connecting HIV communities. Seminars will be hosted at Keele and at Salford universities, and in central London, and presentations given by UK-based and international scholars and HIV activists/advocates.