HIV stigma and social suffering
HIV is unique for the levels of discrimination (qishi) and consequent suffering (expressed in its many forms in the Chinese language as chiru, shouku, qinhai, and wuming) endured by those carrying the virus. Although there is discrimination against hepatitis and TB carriers, the stigma around these is not as serious as HIV (zai yiqi 2010).
The suffering endured by HIV-positive Chinese originates in dominant social understandings of HIV and in political responses to the virus. The work of Shao Jing (2006: 535-69),
Jing Jun (2007), Wang Jianping (2004), Yun et al. (2005: 1149-63), and activists like Wan Yanhai (2010), documentary makers like Zhao Liang (zai yiqi 2010) and Ai Xiaomin (zhongyuan jishi 2007), and authors like Yan Lianke (2006) show that levels of suicide and depression are high among Chinese HIV sufferers. Suicide and depression are also included in discussions of non-medical factors impacting the success of anti-retroviral therapy (Lai et al. 2011: 1521-22).
In blogs and online diaries about HIV that are readily available to the public, HIV-positive Chinese describe how public anxiety about the virus affects their lives. They frequently face discrimination, rejection at hospitals, and anguish over disclosing their seropositive status to their families for fear of abandonment (Zhu Liya de gushi 2007, sec. 2:30-34: 30, UNAIDS et al. 2009: 8). In line with understandings of social suffering suggested by Kleinmann, Das, and Lock (1997), HIV in China has become a serious ‘marker of disadvantage, relative powerlessness, and devastating effects of social change, and in this sense is a moral indicator of cultural or societal disorder’ (Kleinman 1999). Particularly since the 2000s, China’s more liberal media, such as the Southern Weekend (Nanfang Zhoumo) (Guo 1997; Qi 1997: 8; Shen et al. 2003), The Southern People Weekly (Nanfang Renwu Zhoukan) (Chen et al. 2004: 18-39; Wan 2004: 20-21), China Newsweek (Xinwen Zhoukan) (Wu 2001: 30-34; Liu 2004: 28-30), and Xinmin Weekly (Xinmin Zhoukan) (Li 2003: 15-21; Yang and Huang 2004: 20-21) have portrayed the HIV-positive enduring suffering in both urban and rural areas. Many include terrifying images that are often reused in discussions on China’s micro-blogging community, and uploaded to Youku, China’s YouTube (Fu 2007; Gao 2007; Shan and Xu 2012). As China’s Stigma Index Report reveals, based on interviews with over 2000 HIV-positive individuals, only 5 per cent of females and 10 per cent of males said they were able to tell their closest family members and friends about their HIV status (UNAIDS et al. 2009: 6). Many had lost their houses, jobs, friends, and family (2009: 8). These findings are echoed in the latest report by Asia Catalyst and Korekata AIDS Law Center (2012). Accordingly, stigma and its consequences – from violence to job loss – represent ‘an indication of the gravity of stigma surrounding HIV’ (UNAIDS et al. 2009, p. 6), as do the high levels of suffering endured by HIV-positive Chinese. To date there is unfortunately little research that connects HIV-based suffering to media coverage and structural factors (such as the initial state censorship of HIV stories, its endorsement of commercial blood donation, and the avoidance and underfunding of public health campaigns).
The history of HIV in China is marked by controversy and political, social, economic, and international factors. HIV in China has become a problem of detection, managing, reporting, and navigating differences in the governmental and epidemiological narratives. Yet, it is equally important to recognise that the histories of HIV are marked by major changes and improvements to policies in a country governed by conservative and Confucian social values and non-democratic campaigns to ensure social order (Trevaskes 2007: 23-41, 2010: 322-61). Improvements to the management of HIV have been controversial and have happened during a time when most Chinese citizens’ access to medical care has been difficult and when China’s public health sector has been chronically underfunded nation-wide (Liu et al. 2003: 216-22; Lin 2012: 427-40; Ye and Yao 2012; Zhang Yuhui 2012). The current push of civil society organisations and policy advisors to establish a compensation fund for those involved in the tainted blood scandal will hopefully encourage change that was unthinkable just years ago (Asia Catalyst and Korekata AIDS Law Center 2012).