The thesis proposes a theory for the development of substantive representation among social movement organisations (SMOs). Substantive representation (SR) is the extent to which political institutions advance the policy interests of their constituents, in particular the most disenfranchised. Despite their noble proclamations, institutions of representative democracy often fail to advance the interests of groups who have been ignored and absent at the proverbial table. The thesis establishes a causal process to explain the divergence in SR outcomes among informal SMOs, or all-volunteer groups that disavow formal hierarchy in favour of egalitarian modes of decision-making. It utilises a case study of the AIDS Coalition to Unleash Power (ACT UP), an umbrella organisation dedicated to ending the HIV/AIDS crisis in the United States and worldwide. It explains an anomalous story of SR attainment through the ACT UP Philadelphia chapter, compared to sister groups in New York City and Boston. The analysis draws from 92 semi-structured interviews, 13 months of participant observation, periodical review, and archival databases. ACT UP Philadelphia translated common SMO intentions of inclusivity into the uncommon rituals of practice. It forged a deliberate pipeline to invest not only in the presence but also the power of disenfranchised people with HIV, people too dark and poor to interest counterpart groups in other cities. Through an analytic retelling of ACT UP's history, the thesis argues that the fulfilment of SR depends on the ability of SMOs to appeal to member self-interest. Critically, SMOs can offer material incentives and nurture feelings of debt and obligation: causal steps to recruitment and sustainability of a heterogeneous membership. In building a crucial if contentious core of dissimilar people and partnerships, SMOs can unleash an oft-unrealised power for collective action and SR, by and for disenfranchised peoples who had thought change to be impossible.

In this dissertation I examine the influence and impact of consumer politics in the first five years of the AIDS epidemic. Using historical methodologies and leveraging a range of archival materials alongside scholarly and journalistic accounts of the era, I argue that gay men and People with AIDS deployed critical medical consumerism in their earliest responses to the disease. The politics of People with AIDS challenged the normative understanding of the sick by the medical and public health professions that claimed authority to shape the response to the AIDS epidemic. In the context of AIDS, this authority was shared with the gay and lesbian organizations that responded to the epidemic on behalf of the gay and lesbian community. People with AIDS wanted more power in each of these encounters. Living with AIDS involved numerous complex networks of medical, clinical, and care service relationships. In the context of America’s for-profit healthcare and service system and given the social service orientation of community-based responses, they positioned themselves as consumers. I examine the influence and impact of critical medical consumerism in the founding of the earliest AIDS service organizations, the earliest writing by people with AIDS in New York City, the emergence of political organizing among People with AIDS and their allies and its impact on the closure of the New York City bathhouses, the creation of community-based clinical research organizations and the founding of the well-known direct-action group, ACT UP. Critical medical consumerism appeared both as a way of generating and sharing information among People with AIDS, and a language of critique by People AIDS of the community and government responses to the epidemic. Through the lens of consumer politics, I also reexamine well historicized moments in this history, providing a more complex history to a founding document in the politics of AIDS, The Denver Principles. In this dissertation, I conclude that consumer politics is an essential political, social, and cultural lens through which People with AIDS understood the epidemic, though it is not without its limits. In the final chapter, I examine possibilities of future research in this field and the limitations of consumer politics for both the historical actor who deployed it, and for historians who examine this period of history.

在全球基金總部要求擴大公民社會參與度的背景下，2006年4月，非政府組織聯合發起運動，反對中國全球基金國家協調委員會秘書處組織的兩名民間社會代表的選舉，要求增加參與權和改善選舉程式。本研究採用質性研究方法，對這場由非政府組織發起的政策倡導運動的發生原因、運動發起方的構成與真實力量、運動參與方在期間的互動過程與策略運用以及運動所能達成的成果展開分析，為社會運動理論在中國的適用與變化提供實證研究基礎上的探索，對非政府組織在中國環境下謀求組織發展及拓寬政治參與空間提出建議。 / 本研究回顧了中國愛滋病問題的背景與現狀、西方社會運動研究理論體系與相關研究成果以及中國抗爭政治研究，採用動員結構與政治機會結構為核心的分析框架，發現： / （1）在西方社會運動理論研究中沒有重要地位的傘狀組織關係在在CCM選舉運動動員結構中扮演了關鍵角色，增加了運動發起方的整體力量與合法性來源，並呈現出多層級傘狀組織結構。 / （2）CCM選舉運動聯盟距離臨時性、適當制度化和去中心化的目標尚有距離，正在向理想的外部動員結構轉化，目前呈現出非政府組織聯盟與多層級傘狀組織相結合的動員結構。 / （3）中國目前宏觀政治環境中存在倡導型運動的生存空間。通過一系列的策略選擇與運用，運動發起方可以發掘、詮釋、擴大政治機會，不斷營造運動發展空間，尤其是對國際因素的敏銳把握與利用，成功將運動不斷推進。 / （4）政治機會結構四要素並不是平行發揮作用。在國家鎮壓能力基本穩定維持不變的情況下，政治體制內同盟者的存在對政治管道和政治精英體制穩定性發揮主導作用，進而對運動進程和結果帶來深遠影響。 / 本研究提出了目前CCM選舉運動的動員結構特徵，以及運動發起方在對政治機會把握、利用過程中的優點與缺陷，並提議加入跨界拓展作為考察外部動員結構的分析視角，在政治機會結構四要素的分析中整合國際因素的影響，最後提出對非政府組織發展，國際項目管理和相關政策的建議。 / Since Global Fund claimed for expanding public participation in civil society, in the April of 2006 NGOs made allies to launch a movement against the election organized by CCM Secretariat, requiring adding the right of participation and improving election procedures. With qualitative research method, this paper analyzes the reason, process and result including interactions and strategies among participants of this advocacy movement organized by NGOs, providing evidence-based study for employment and adaptation of the social movement theory in China; and makes suggestions for NGOs to expand organization development and political participation in the context of China. / This study adopts mobilization structure and political opportunity structure in the theory of social movement as core theoretical framework based on reviewing the background and status quo of AIDS issue in China, the theory and relevant studies of social movement as well as studies on China contentious politics. Findings are as follows: / 1.Umbrella organizations, which are of less emphasis in the western studies of social movement, play a key role in CCM election movement mobilization. It increases organizers’ overall strength and legitimacy and shows a multi-level structure. / 2.CCM election movement allies haven't yet achieved being temporary, proper institutionalized and decentralized, and are converting into ideal external mobilization structure, demonstrating integration among NGOs allies and multi-level umbrella organizations at present. / 3.There exists living space for advocacy movements in the context of political environment in China. Organizers are able to detect, interpret, extend political opportunity via exertion of strategies, especially taking advantage of international factor, and, consequently, push the movement forward successfully / 4.Four components of political opportunity structure are not equally important. Under the circumstance that the state remains its ability of repression, political elite allies play a more leading role than the access to participation and the stability of ruling alignments and influence profoundly on both process and result of the movement. / This paper delineates the mobilization structure of CCM election movement as well as the disadvantages and advantages of organizers, when they were holding political opportunities and taking advantages of them. Allies cross borders are added as a new angle of view to analyze external mobilization structure. International factor is integrated with four components of political opportunity structure to analyze the issue. Suggestions are made for organization development of NGOs, international projects management and policy reform in the end. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / 王泳. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references (leaves 223-258) / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstracts in Chinese and English. / Wang Yong. / 致謝 --- p.5 / 研究摘要 --- p.6 / Chapter 第一部分 --- 研究問題與研究方法 --- p.12 / Chapter 第一章 --- 導論 --- p.12 / Chapter 一 --- 緣起 --- p.12 / Chapter 二 --- 研究背景與簡介 --- p.13 / Chapter 三 --- 研究問題 --- p.14 / Chapter 第二章 --- 文獻回顧 --- p.18 / Chapter 一 --- 中國愛滋病問題回顧與現狀 --- p.18 / 問題的浮現 --- p.18 / 現有公共政策的缺陷 --- p.21 / 憤怒之源“血漿經濟 --- p.22 / 愛滋病領域內的先鋒，NGO介入與資訊披露 --- p.25 / 來自基層的普遍抗爭與草根小組的大量湧現 --- p.30 / 聯合抗爭的逐漸形成 --- p.36 / Chapter 二 --- 西方社會運動理論及其研究發展歷程 --- p.38 / 社會運動理論與研究在歐洲的發展 --- p.40 / 美國早期的社會運動研究與理論發展 --- p.41 / 二十世紀九十年代以來政治過程研究與理論的新發展 --- p.43 / 新社會運動 --- p.48 / Chapter 三 --- 中國社會運動與抗爭政治的研究與理論 --- p.49 / Chapter 第三章 --- 概念與理論框架 --- p.62 / Chapter 一 --- 本研究的概念體系 --- p.62 / 草根組織 --- p.62 / 非政府組織 --- p.63 / 以社區為基礎的組織 --- p.66 / 政府主導的非政府組織 --- p.66 / 民間組織 --- p.67 / 國際組織 --- p.67 / Chapter 二 --- 理論框架 --- p.68 / Chapter 第四章 --- 研究設計 --- p.76 / Chapter 一 --- 研究範式與方法 --- p.76 / Chapter 二 --- 研究者的角色 --- p.87 / Chapter 三 --- 訪談對象的抽樣方法 --- p.92 / Chapter 四 --- 資料收集、分析與研究質量 --- p.94 / Chapter 第二部分 --- 研究發現 --- p.100 / Chapter 第五章 --- 全球基金中國國家協調委員會2006年選舉事件始末 --- p.100 / Chapter 一 --- 全球基金中國項目背景與CCM改革 --- p.100 / Chapter 二 --- 第一階段：官方主導的選舉與衝突的產生 --- p.103 / Chapter 三 --- 第二階段 民間選舉與選舉結果合法性爭辯 --- p.107 / Chapter 四 --- 第三階段：獨立第三方調查 --- p.114 / Chapter 五 --- 第四階段：武漢大會與重新選舉 --- p.118 / Chapter 第六章 --- CM選舉事件中抗爭活動的動員結構 --- p.127 / Chapter 一 --- 草根組織與非政府組織的連接 --- p.127 / “愛知行的來龍去脈 --- p.128 / “愛知行與草根組織的關係 --- p.130 / 民間獨立選舉會議之前的動員措施 --- p.137 / 非政府組織參加選舉的動機 --- p.139 / 總結 --- p.143 / Chapter 二 --- 非政府組織聯盟 --- p.145 / 非政府組織間聯盟 --- p.146 / 跨界聯盟與社會關係網絡 --- p.149 / 總結 --- p.154 / Chapter 三 --- 結論 --- p.155 / Chapter 第七章 --- CCM選舉事件中的政治機會分析 --- p.164 / Chapter 一 --- 運動初始階段的政治機會 --- p.165 / CCM選舉抗爭前的政治機會結構 --- p.165 / 政治機會條件成熟與運動的發起 --- p.171 / Chapter 二 --- 運動發展階段的多方互動 --- p.175 / 獨立選舉方的抗爭策略 --- p.175 / 獨立選舉反對方的壓制策略 --- p.183 / 多元利益的角逐 --- p.187 / Chapter 三 --- 結論 --- p.191 / Chapter 第三部分 --- 總結與討論 --- p.195 / Chapter 第八章 --- 總結 --- p.195 / CCM選舉運動的動員結構 --- p.196 / CCM選舉運動的政治機會空間 --- p.199 / 研究貢獻 --- p.204 / 研究局限 --- p.205 / 未來研究方向 --- p.206 / Chapter 第九章 --- 討論與建議 --- p.207 / Chapter 一 --- 非政府組織發展與運動策略 --- p.207 / Chapter 二 --- 國際愛滋病項目的運作與管理 --- p.209 / Chapter 三 --- 政策建議 --- p.211 / Chapter 附錄一 --- 訪談提綱 --- p.214 / 對NGO的訪談提綱 --- p.214 / 對草根小組的訪談提綱： --- p.215 / 對參與抗爭行動的HIV感染者的訪問提綱 --- p.216 / Chapter 附錄二 --- 訪談同意書 --- p.218 / Chapter 附錄三 --- 受訪者基本情況 --- p.221 / 參考文獻 --- p.223

This thesis explores the theme of displacement in AIDS (Acquired Immune Deficiency Syndrome)-related discourse in post-apartheid South Africa in the period 1994−2010. It contends that the subject of AIDS and the AIDS-ill is seldom confronted directly in the discourse, but displaced in various ways. Using the theory of social constructionism and the discourse theory of the French poststructuralists, particularly Michel Foucault, selected texts, both literary and non-literary, are subjected to discourse analysis, in which the interrelationships between linguistic and visual representations of AIDS, practice, knowledge and power relations are examined. Recognising that all representations are to some extent displaced constructions, the thesis investigates additional reasons for the particular kinds of displacement of AIDS seen in AIDS discourse. These include stigma, fear, defensiveness and the enduring power of preexisting discourses onto which AIDS is grafted. In narratives by and about the AIDS-ill, personal stories are displaced when mythical structures are used to give meaning to what could otherwise be viewed as futile, random suffering. As a result of the different displacement devices employed in AIDS discourse, new meanings of AIDS are constructed, related to the social, political and cultural context out of which they have arisen. The thesis comprises five chapters, each of which explores a different form of displacement. In Chapter 1, 'Displacing AIDS through Language', the focus is on language as a form and means of displacement; Chapter 2 'Politicising AIDS' explores the way that AIDS discourse is projected onto the larger, well-established discourse of politics, and specifically on the discourse of 'the struggle' against apartheid; while Chapter 3, 'Satirising AIDS', considers the way that satirists displace AIDS through irony, exposing the contradictions and absurdities inherent in the discourse. Chapter 4, 'Gendering AIDS', shows the extent to which AIDS-relared discourse is articulated to gender-related issues such as unequal power relations between men and women and stereotypical views of women's identities and 'proper' roles. The final chapter, Chapter 5, 'Narrating AIDS', deals with the discourse of personal illness narratives, showing how individuals displace the experience of illness through narrative, often using the structures of myth to give meaning to their experience. / English Studies / D. Litt. et Phil. (English Studies)

HIV/AIDS is a deadly disease that needs to be addressed with immediate effect before serious damage can occur. Because the government has a responsibility over the health of its citizens, everybody expects the government to take a lead in the fight against this epidemic and from the look of things the government's strategies are not making the desired impact on the epidemic. The author attempted to highlight that the South African government has not played a satisfactory role in the fight against this pandemic, which threatens to alter history to a degree not seen in the world.

HIV/AIDS is a deadly disease that needs to be addressed with immediate effect before serious damage can occur. Because the government has a responsibility over the health of its citizens, everybody expects the government to take a lead in the fight against this epidemic and from the look of things the government's strategies are not making the desired impact on the epidemic. The author attempted to highlight that the South African government has not played a satisfactory role in the fight against this pandemic, which threatens to alter history to a degree not seen in the world.

The ongoing urgency of addressing AIDS in South Africa has kept academics and activists focussed primarily on the immediate crises of AIDS ‘in the present’. This thesis, covering the period 1980 – 1995, examines narratives about, and responses to, AIDS ‘in the past’ and explores the interplay between these narratives and elites in medical and political communities trying to address AIDS during a period of political transition. The thesis begins by examining the hegemonic medico-scientific narratives about AIDS that featured in the South African Medical Journal, an important site of enquiry as AIDS was primarily conceived of as a ‘medical issue’. The SAMJ narratives, which often relied on constructed ‘AIDS avatars’, framed understandings of the syndrome and influenced responses to it by medical and political communities. The first community that the thesis explores is the African National Congress (ANC) in exile, which had to address AIDS in exile communities and prepare health strategies for ‘the new South Africa’. Secondly, the thesis analyses government responses to AIDS and argues that four phases of response can be identified. These phases were characterised by minimum concerns about obtaining information and providing health advice; efforts to gather infection data while exploiting political and public fear; attempts to extend health education and (belatedly) encourage broader engagement; and finally, consultative, democratic ideals. The thesis then examines the National Medical and Dental Association (NAMDA) a progressive medical organisation that worked with the ANC on influential health (and AIDS) strategies. NAMDA members ‘crossed over’ between various medical and political communities and both reinforced and challenged hegemonic AIDS narratives. Finally, the thesis moves from the abstract, via the practical, to the personal and concludes with a detailed account of the experiences of two sexuality activists at the intersections of these communities and narratives. By focussing on these medical and political communities, and analysing the relationships between these communities, the existing AIDS narratives, and individuals, the thesis also reveals the constructions of morality, ‘race’, gender, and sexuality that infused them. In doing this it shows how polemic and politics combined to influence practical responses to, and personal experiences of, AIDS.

This thesis explores the theme of displacement in AIDS (Acquired Immune Deficiency Syndrome)-related discourse in post-apartheid South Africa in the period 1994−2010. It contends that the subject of AIDS and the AIDS-ill is seldom confronted directly in the discourse, but displaced in various ways. Using the theory of social constructionism and the discourse theory of the French poststructuralists, particularly Michel Foucault, selected texts, both literary and non-literary, are subjected to discourse analysis, in which the interrelationships between linguistic and visual representations of AIDS, practice, knowledge and power relations are examined. Recognising that all representations are to some extent displaced constructions, the thesis investigates additional reasons for the particular kinds of displacement of AIDS seen in AIDS discourse. These include stigma, fear, defensiveness and the enduring power of preexisting discourses onto which AIDS is grafted. In narratives by and about the AIDS-ill, personal stories are displaced when mythical structures are used to give meaning to what could otherwise be viewed as futile, random suffering. As a result of the different displacement devices employed in AIDS discourse, new meanings of AIDS are constructed, related to the social, political and cultural context out of which they have arisen. The thesis comprises five chapters, each of which explores a different form of displacement. In Chapter 1, 'Displacing AIDS through Language', the focus is on language as a form and means of displacement; Chapter 2 'Politicising AIDS' explores the way that AIDS discourse is projected onto the larger, well-established discourse of politics, and specifically on the discourse of 'the struggle' against apartheid; while Chapter 3, 'Satirising AIDS', considers the way that satirists displace AIDS through irony, exposing the contradictions and absurdities inherent in the discourse. Chapter 4, 'Gendering AIDS', shows the extent to which AIDS-relared discourse is articulated to gender-related issues such as unequal power relations between men and women and stereotypical views of women's identities and 'proper' roles. The final chapter, Chapter 5, 'Narrating AIDS', deals with the discourse of personal illness narratives, showing how individuals displace the experience of illness through narrative, often using the structures of myth to give meaning to their experience. / English Studies / D. Litt. et Phil. (English Studies)