Introduction: This article provides a fascinating, in-depth study of the Women’s Network against AIDS – China (WNAC). WNAC has 21 organisational members, although most of these can be better characterised as peer support groups rather than NGOs. It is also a relatively new network, having formed in July 2009 on the basis of a web-based network of individuals that had existed for several years previously. From these organic, virtual roots, the network has transformed into a national body with a significant degree of formal organisation, at least on paper. In a sector already containing multiple and sometimes competing networks of people living with HIV (PLWH), some observers hoped that WNAC could become a less contentious, more inclusive network than other existing groups. In the network’s short history to date, it faces many challenges in its development, and it is too soon to draw conclusions about its success or sustainability.
In May 2010, a fundraising dinner took place at Shanghai’s world-class art museum to commemorate the 27th annual International AIDS Candlelight Memorial Day. Three groups were selected as beneficiaries: the Shanghai Red Cross Society, a Hong Kong-based foundation, and a newly-formed network of HIV-positive women’s support groups, the Women’s Network against AIDS – China (Nǚxìng kàng’aì wǎnglùo – Zhōngguó). When the network’s secretary general took the podium, she said, “Because of this virus in our blood, we sought each other out, talked among ourselves and formed small groups. Finally, we connected into a network… [As] Chinese women affected by AIDS, we are facing the disease while still pursuing life” (WNAC 2010: 4). From its share of donated proceeds of the event, the Women’s Network (WNAC) received 40,000 yuan (approximately £4,000), a substantial contribution to the network’s budget.
Less than a month after the successful fundraising dinner in Shanghai, the network closed its Beijing coordination office, citing rising rents and the end of grant funding from its major donor, the Joint United Nations Programme on HIV/AIDS (UNAIDS). Although a new UNAIDS grant is reportedly in process, it had not yet been approved as of August 2010 (C69). The network secretariat decided to “temporarily withdraw the Beijing office until the next phase of the project and then consider whether the application is successful before re-establishing the office” (WNAC 2010: 1). After less than a year of formal operations, the Women’s Network’s future lay in the balance.
The politics of HIV ((In keeping with current international practice, this chapter refers to the Human Immunodeficiency Virus (HIV) and people living with HIV (PLWH). This usage is preferred by most advocates over referring to AIDS (Acquired Immunodeficiency Syndrome, a disease that affects people in late stages of HIV infection). In Chinese, the word AIDS (aìzībìng) is commonly used, and some international programmes continue to use AIDS or “HIV/AIDS” in their titles.)) have been contentious in many settings. Due to the most frequent means of transmission of the virus, through sexual contact and drug use, as well as its high morbidity, people living with HIV (PLWH) are subject to extreme social stigma and discrimination. Organisations, networks and support groups representing PLWH thus face additional legal, political and social challenges compared to other civil society actors. In part to overcome stigma, HIV advocates have adopted relatively contentious strategies to draw public and official awareness to their situation. China has been no exception to this global pattern: since the first case of HIV was discovered in 1985, activists have been arrested for exposing a major blood transfusion contamination scandal (C7, Gnep 2009), held protests (C37, Young and Mian 2008), and in several cases left the country based on perceived threats to their personal safety (Wong 2010, Thurber 2009).
Chinese government policy towards HIV has, however, opened considerably since the attempted cover-ups of the Henan blood scandal and other public health crises such as the SARS epidemic in 2003, which formed a key turning point (C52, Hu Jia 2007, Micollier 2009) ((A similar transformation took place during the same time period in Vietnam, where HIV had previously been labelled as a “social evil” (Government of Vietnam 2004).)).
Government services to PLWH and cooperation with social and community groups began around 2000, leading to policy and attitudinal changes within the state (C76). The “four frees, one care” policy, offering free HIV testing, counselling, and anti-retroviral therapy, was announced at the end of 2003 (Kaufman et al 2006). Comprehensive regulations on HIV/AIDS prevention and treatment were promulgated in 2006, banning discrimination against PLWH (Xinhuanet 2006). The Chinese government has increasingly recognised the role of civil society in HIV prevention and treatment, while still selectively restricting groups’ operations (Meng Lin 2009b, Thompson and Jia 2010). International donors speak highly of the Ministry of Health’s commitment to accepting civil society roles and find them a relatively open-minded and progressive branch of the government (C69). As a result, while HIV issues are still contentious, the level of political restriction or “sensitivity” has decreased in the last five years, with an emerging balance between public health and right-based approaches (C37).
In the early years of the 21st century, large-scale international funding for HIV prevention, care and treatment began to flow into China. The largest donor is the Global Fund against AIDS, Tuberculosis and Malaria (GF), which has contributed over US $500 million to HIV programmes since 2001 (Ministry of Health 2010: 58); other major donors have been the Clinton, Ford and Gates Foundations, as well as USAID, DFID and other bilateral government funders. Most of these grants are channelled through the Ministry of Health and other Chinese government agencies; only one percent of GF funding is contributed directly to grassroots organisations (C52). The scale of GF support to China has led to some international criticism, given China’s economic resources and greater HIV prevalence in many poorer countries (Chow 2010), although the amount contributed per capita remains relatively low ((Editor’s Note: In May of this year, the GF suspended nearly $300 million in funding to China due to mismanagement of funds and restrictions on participation by civil society organizations. Then in late August, it decided to restore funding but at reduced levels.)).
HIV support groups, previously under-funded and isolated at the margins of Chinese society, found themselves almost overnight at the centre of international efforts to increase civil society involvement in reducing the spread of the disease.
More than 500 community groups and organisations, including GONGOs, are now involved in China’s AIDS response (Ministry of Health 2010: 62), including some registered NGOs and many unregistered support groups and networks (C37). Few of these groups, however, represent women affected by HIV ((“Affected” by HIV is a broad term that can include people living with HIV (PLWH) as well as those with a HIV-positive family member. In China, different from most international usage, PLWH commonly refer to themselves as “infected” (gǎnrǎnzhě “the infected ones”). I use PLWH in recognition of the limits of designating people by an acronym for an “illness identity” (He XP 2006: 19).)). According to official statistics, women make up 30.5% of China’s estimated 740,000 PLWH (Ministry of Health 2010: 5). But they have historically been under-represented in HIV policy and programmes (Bu and Liu 2010, UNAIDS 2006). The latest edition of the annual China HIV/AIDS NGO Directory now runs to over 300 pages, but includes only a handful of women’s support groups (CHAIN 2010). And of 357 small groups who voted in the 2009 elections for the GF’s Country Coordinating Mechanism (CCM), only five were women’s support groups, plus 13 groups representing (female or male) sex workers (C76).
As the Women’s Network against AIDS was forming in early 2009, the group’s first media release described their rationale in this way:
The number of women affected and infected by AIDS is rising rapidly. Although women have always played an important role in the process of the struggle against AIDS, on some occasions women’s voices have been weak or even nonexistent. HIV-positive women in many locations have already become aware of the need to form small groups to participate in serving the community and protecting their own rights. At the same time, women have sensed that their own capacity is not sufficient, their access to information is not smooth, and they lack autonomy and the right to speak. Thus, it is necessary to form a working network to develop collaboration. (China Development Brief 2009)
Although WNAC does not have a long history or record of policy advocacy, I selected it as a counterpoint to other case studies to illuminate gendered aspects of civil society networks, show how a nationwide virtual HIV network has formed, and to explore both empowering and disempowering aspects of donor funding.
HIV and Women’s Networks in China
The Women’s Network against AIDS formed in the midst of a complex web of overlapping and in some cases competing field of civil society actors. Networks of HIV support groups first emerged after 2001 due to the conditions of government policy openings, international funding, and expanding access to the Internet and other communications technologies. Groups that formed early, were located in major cities, and were led by charismatic, well-connected individuals had built-in advantages ((International experience was also helpful, but not essential. Many network leaders, including WNAC, do not speak foreign languages.)). Several previously established groups used their existing connections with government and donors to build national networks of peer groups, particularly those representing gay men (MSM) ((The neutral term “men who have sex with men” (MSM) is commonly used in international health and also in China, where many MSM do not self-identify as gay. The prevailing Chinese slang used by MSM to describe themselves is (tóngzhì, “comrade”), with the full political irony of the term intended (Young and Mian 2007).)). Unusually, funding was also channelled to unregistered groups, with tacit government approval (C69).
Cooperation among HIV activists is also widely perceived to be lower than in other sectors of Chinese civil society (C26, C29, C68). The increased availability of funding fostered increased competition to obtain it. As one long-term donor describes, “Everyone wants to be king of the mountain” (C52). Added to great geographic diversity, HIV groups and networks also segmented into vertical sub-sectors representing different affected groups, many of whom have little contact with each other even if living in the same city or county (C69). MSM and PLWH generally are the largest sub-sectors, along with drug users, sex workers, youth/students and women (C50). The 2010 China HIV/AIDS NGO Directory lists 80 PLWH support groups and an additional 116 MSM groups ((The directory is produced by the China HIV/AIDS Information Network (CHAIN) together with the China Centre for Disease Control’s HIV programme. In its organisational brochure, CHAIN describes itself as a “platform for information exchange and open discussion” that was co-founded by three GONGOs in 2002. It operates a website and circulates printed information about HIV, but is not a “real” membership network (C37).)). These groups have formed two large networks under the leadership of competing Beijing coordinating NGOs, the Aizhixing Institute (“Love-Knowledge-Action”) and Ark of Love (Aì zhī fāngzhōu); as a WNAC member put it, “AIDS groups in China have two heads” (C55).
The China National Network of AIDS CBOs (CNNAC) is “the biggest network for Chinese grassroots NGOs”, with 133 members as of December 2008 (CNNAC 2008). In addition to workshops, training, and some work on legal aid, the network has set up a community fund that provides small-scale financial support to between 30-40 members (C50). During 2008-09, CNNAC was coordinated by Zhejiang LGBT Guide Net (CNNAC 2008), but Aizhixing still refers to it as “our network” (C50). The network is largely comprised of MSM support groups: at its annual conference in November 2009 in Tianjin, 90% of attendees were male, as were all seven main presenters ((I was invited to observe this conference by Aizhixing’s director.)). Despite its limitations, one donor who does not fund CNNAC notes that this is “the best functioning [HIV] network in China” (C69). The departure of Aizhixing’s director to the US in May 2010 has weakened CNNAC’s standing, but also given it an opportunity to restructure its operations.
The second major PLWH network, the China Alliance of People Living with HIV/AIDS (CAP+) was founded in 2006 and is coordinated by Ark of Love with support from the Ford Foundation. From an initial 24 members, the network has now expanded to 109, although these do not all participate at the same level (C64). The network carries out a mix of activities, including advocacy, training and service delivery, but lacks a clear strategy (C69). Its connections with the Ministry of Health and other government agencies are more balanced than CNNAC’s; those members who express an interest in research and advocacy are able to take part. Since the membership is so geographically diverse, some CAP+ activities take place at the regional level rather than nationally (C64).
A third cluster of HIV networks, with closer links to CAP+ than CNNAC, has formed in south-western China through the coordination of AIDS Care China, an NGO based in Nanning, Guangxi province. These sub-sectoral, regional networks focus mainly on service delivery and community support to PLWH, rather than policy advocacy (International HIV/AIDS Alliance 2010a, Robertson 2007). For instance, AIDS Care supports a Self-Help Network of Women Living with HIV/AIDS that has 850 members and serves 1400 women in four provinces (Ministry of Health 2010: 53). Other networks in this high-prevalence area are funded by a variety of other donors: for instance, a network of drug users groups exists in the Red River or Honghe area of Yunnan near the Vietnamese border, with support from the Open Society Institute and the International HIV/AIDS Alliance (C50).
A Chinese academic survey concludes, however, that HIV NGO networks are “still in the early stages of development”: their advocacy work mainly aims to improve awareness among PLWH, but is under-funded and lacks technical capacity for larger-scale interventions (Han JL et al 2009: 40).
The most significant civil society effort to improve coordination and networking has taken place around elections to the Global Fund CCM (Gnep 2009). In December 2006, 110 HIV grassroots organisations met in Wuhan together with observers from more than 50 INGOs to strategise for increased civil society participation in the CCM. After “extremely heated debate and intensive deliberation,” the participants approved a procedure for election of the NGO representative to the CCM, two alternates, and an NGO working committee allocated by sub-sector within the HIV community, rather than geographically (Jia Ping 2009: 4). This was to ensure that all important stakeholders had a voice in the CCM process, and shows that networking was already taking place at this time. There were initially 11 NGO committee members, of which one seat was reserved for “female organizations” and another open to any PLWH (13-14). This process has significance beyond the HIV field: these were the first independent national elections of any kind in China organised by non-members of the Communist Party. As a result, “the CCM represents a rare instance in which government officials sit as equals with civil society on a decision-making body” (Thompson and Jia 2010).
Formation of the Women’s Network against AIDS
Silent weeds, inconspicuous flowers
We bloom freely and fly with wind
For the dream of a new settlement and growth
We go through trials and hardships with no fear to death
Showing the power of life
We knit a red scarf with the stories of HIV/AIDS
With the soft hands of women
Knitting a wall against AIDS for the world ((This poem was written for the Dandelion Network of Women Living with HIV by the director of a real estate company in Guangdong province (He TT 2009).)).
In the early years of China’s HIV epidemic, stigma and fear kept most HIV-positive women “in the closet” about their status, although in many cases they were eventually “exposed” (bàolù) by neighbours or even health staff (He XP 2006: 70). Many women (and men) made the unwelcome choice to move away from their homes and families for the anonymity and access to treatment of major cities. For those who were unable or unwilling to do this, their immediate need was to find someone – anyone – to talk to who would understand and offer support (C75). At first, communication took place by long-distance telephone. The spread of the Internet, however, offered new possibilities for connection through instant message boards and chat rooms. In these virtual spaces, people could share their experiences with HIV without telling their real name or identity, even their location. They could also talk to people while revealing nothing at all about their HIV status. Many PLWH went on to develop personal websites and blogs as tools for organising (He XP 2006: 94). This was precisely what led to the formation of the Dandelion Network (Púgōngyīng), a virtual predecessor to the Women’s Network against AIDS.
“In May 2006, I was losing my mind on receiving a HIV-positive report. Without enough explanation and care from doctors, I had no choice but to search for information and help via the internet. I met many friends who were suffering and struggling against the disease. They helped me solve my initial problems and gave me important advice when I was facing therapy options. Then, when I could finally face my HIV status calmly, my first thought was doing something for the patients with same experience as me who were struggling for care and support and try my best to help them.
I began to write treatment notes on Sina Blog with the hope that my experience and thoughts could encourage HIV-positive people to fight bravely against the disease. As more accessed, more people made consultations to me. In order to promote the communication between women positives, I created a QQ group ((QQ is a popular Chinese message board, similar to Yahoo or Windows Messenger. At least two other HIV networks, CNNAC and the Chi Heng Foundation’s coalition for AIDS services, also use QQ for web meetings (CNNAC 2008; C7).)) in February 2007 named “Dandelion”. Dandelion is a soft but strong plant that spreads her seeds with love around at her season. It is a flower full of maternity and life energy with endless love.
Many people think QQ groups childish, but this web-based chatting tool successfully meets the needs of people located in different geographic areas and provides the requirement of privacy.
The members can communicate freely at anytime, from anywhere, as long as the internet is available.
Based on the QQ group, some active members, Julie, Ai Zhu, Zhou Lin, Lei Lei and me decided to set up the Dandelion Network of Women Living with HIV/AIDS in March 2007. We hoped, through the internet, to unite more women to help our friends in difficulties and to raise our unified voice. It’s an open organization that has no office space and staff, but with several core members and more than 100 volunteers and members that join or quit at their will”. (He TT 2009)
The use of message boards such as QQ was essential to building links among women in different provinces. Prior to the Internet, such links would have been impossible; as a Hong Kong-based activist says, “there is no way to overstate the importance” of the Internet (C7). The QQ message board used by the Dandelion network is a domestic Chinese service, thus less liable to blockage than services by foreign providers such as Google. In all, restrictions on the Internet are an occasional annoyance to HIV activists, but do not effectively deter them from communication ((For instance, Aizhixing’s website has been blocked by authorities on several occasions in the past, but not in 2010 despite the director’s public departure from China. One Yunnan-based NGO network’s website was blocked in 2010 on the grounds that the network is not registered; the network waited a short while, then re-opened the website using a .info domain name that is registered outside China (C61).)).
The Dandelion activists and other women’s support groups also used existing publications and channels of communication provided by other HIV networks to raise the profile of women’s issues. For instance, the November 2008 issue of “Our Voice” , published by Ark of Love, contains articles entitled “A person who comes out of the shadows” and “Infected women: stand up and come out!”, the latter by the future WNAC secretary general, and profiles two women’s support groups, Half the Sky and the Guiyang Garden of Health and Care, which later became WNAC founding members. As more voices, stories and experiences of PLWH have appeared in public, Chinese society has become more tolerant towards people affected by HIV. These stories not only change images and social assumptions, but have also led to effective and powerful social organising (He XP 2006: 121-2). In this case, women being open about their HIV status and reaching out to others through Internet and social networks formed the preconditions for establishment of WNAC.
In February 2009, 12 delegates from groups of HIV-infected and affected women in eight provinces met in Beijing to hold the first organisational meeting of the Women’s Network against AIDS (China Development Brief 2009). According to materials shared by the WNAC secretariat, the goals of this first meeting were to share experiences and explore network strategy. This was followed by group interviews to evaluate needs and existing capacities within the network. A second preparatory meeting followed to discuss formation of a strategic plan and draft network by-laws. After six months of preparation, the official launch of the network occurred on 9 July in Beijing (C55).
Network membership and structure
The Women’s Network against AIDS has 21 initial organisational members from 11 Chinese provinces and cities (Douban 2009). The membership, strategies and activity plans of the network have been well organised and documented for distribution among members as well as to the network’s external donor, UNAIDS, which began support in the preparatory phase of the network. As a result, WNAC has a more formal structure than many other civil society networks with a longer history. WNAC’s reported budget in 2009 was 200,000 yuan (£20,000), all of which came from UNAIDS (CHAIN 2009: 304).
Most WNAC member organisations are local groups of women living with HIV; several also include women whose family members are affected by HIV, or carry out other activities. For instance, Bitter Grass in Kunming includes HIV-positive women, children and female sex workers among its members, the only group in China to do so (C55, C75). Silk Road Posthouse, in Harbin, conducts activities for MSM, youth, migrant workers and other at-risk groups, and has received three small grants totalling 15,000 yuan (£1,500) from the Global Fund (CHAIN 2009: 297). Shenyang Firefly, also in the northeast, has received 35,000 yuan in two GF grants as well as small projects with the Liaoning provincial Red Cross, the Hong Kong AIDS Foundation, and other donors to conduct a wide variety of activities for HIV positive women and men (CHAIN 2009: 62). The largest member in terms of project funding is Ningming Light of the Lotus City, a peer support group in a Guangxi town near the Vietnamese border, which has an annual budget of 150,000 yuan and projects with Family Health International and Action Aid (CHAIN 2009: 49), reflecting the greater involvement of INGOs in south-western China than other regions. One WNAC member is a traditional development NGO, not a HIV support group: the Liangshan Institute, which implements projects for drug addicts, sex workers and PLWH with support from a GONGO and the Global Fund (CHAIN 2009: 273).
In all, at least nine of the 21 organisational members have received some external funding and are listed in a national directory of HIV/AIDS groups (see table below). Regardless of this, 18 of the 21 members are unregistered, either because they have been unable to register as NGOs or have not made any attempt. The organisational members represent between 50 and 200 participants each, a total of over 2,000 women nationwide (C55). No membership fees or dues are charged, as most members would be unable to pay and are themselves looking for funding. The network supports its members through training and organising meetings and workshops, but does not distribute any financial support (C55), in contrast to CNAC and CAP+ that have channelled sub-grants to members.
Table 6.1. Members of the China Women’s Network against AIDS
|Chinese name||English translation ((Translations are mine except for organisations listed in the HIV NGO Directory, in which case I have followed the English name listed there, even in cases where it is not a complete translations of the Chinese name.))||Location (province)|
|Dandelion Network for Women Living with HIV/AIDS*||Virtual network (Beijing/Guangxi)|
|Henan Golden Sunshine Children Support/Care Association*||Henan|
|Zhengzhou Auspicious Home||Henan|
|Shangqiu Winter Plum Flowers||Henan|
|Henan Dengfeng Home of Joyful Women*||Henan|
|Xinxiang Loving Hearts Federation||Henan|
|Gongyi Happy Home||Henan|
|Liangshan Institute for Gender and AIDS Prevention*||Sichuan|
|Linfen Green Harbour “Hand In Hand”||Shanxi|
|10.河北永清“半边天”||Hebei Yongqing “Half the Sky”||Hebei|
|11.中山阳光公社||Zhongshan Sunshine Commune||Guangdong|
|12.柳州雨后阳光||Liuzhou Sunshine After Rain||Guangxi|
|13.宁明荷城之光||Ningming Light of the Lotus City*||Guangxi|
|14.贵阳健康关爱苑||Guiyang Garden of Health and Care*||Guizhou|
|15.南明滋心小组||Nanming Bursting Hearts Small Group||Fujian|
|16.浙江互助会-网络支持||Zhejiang Mutual Help Society and Support Network||Zhejiang|
|17.上海美丽人生-依依茉莉||Shanghai Beautiful Lives- Supple Jasmine||Shanghai|
|18.苦草工作室||Bitter Grass Studio*||Yunnan|
|19.七台河爱心家园||Qitaihe Loving Hearts Home||Heilongjiang|
|20.丝路驿站||Silk Road Posthouse*||Heilongjiang|
Organisations listed in the 2009-10 China HIV/AIDS NGO Directory
WNAC began its formal existence in 2009 with three staff: a secretary general, an administrative officer and an assistant, based in a small apartment in an industrial area of Beijing, near a hospital that provided the first HIV treatment in the city and still houses several other HIV-related organisations (C55, C71). The secretary general, an HIV-positive woman, was the founder of the Dandelion network; the HIV status of the other two staff (one female, one male) is unknown to me. According to materials provided by the secretary general, the network operates through a hub-and-spokes structure, with the secretariat at the centre and members at the periphery. This may reflect some network communication paths, but in reality some members have closer links to the secretariat than others, particularly Golden Sunshine and Shanghai Beautiful Lives. With nearly one-third of WNAC members coming from Henan, Golden Sunshine plays a regional coordinating role in the province that has intensified in 2010 with the formation of a provincial women’s network that it coordinates (Yuan WL 2010). Outside of Henan, most other provinces are only represented by a single organisation, with a fairly wide national spread, but sparse coverage in the high-prevalence provinces of Yunnan and Guangxi where the AIDS Care-organised network is active. There is also no membership group based in Beijing, yet the secretary general felt it important to have the network coordination office there in order to interact with donors and other HIV organisations (C55).
Soon after its formal establishment, WNAC developed a strategic plan, objectives and activities covering the period from 2009-12. In 2009, the network aimed to focus on “establishment and expansion,” consisting of participation in local meetings and conferences, development of partnerships, writing for media and internet, and establishing a national office in Beijing. From 2010-12, a three-year strategy includes four objectives:
- Establish mechanisms for women’s leadership and organisational capacity.
- Develop organisation to implement cooperative projects for HIV-affected women.
- WNAC extends its organisation and sustains its external development.
- Advocate for gender-sensitive AIDS policies and measures.
As a newly-formed network, WNAC does not yet have an extensive record of advocacy activities. However, WNAC members have conducted local advocacy in their respective provinces, in some cases contributing to national-level discussions about HIV-AIDS policies affecting women. Of the advocacy strategies described in chapter 4, WNAC uses primarily community advocacy, aiming to involve more HIV-positive women and support groups in their activities. Media is also a part of the network’s advocacy strategy, both mainstream media and HIV sector newsletters and publications. WNAC has made particularly effective use of literary and art as media for awareness raising and mobilisation. The weaker part of the women’s network’s advocacy to date has been in linking to policy: network leaders have taken part in some policy discussions and expressed their opinions, but since its members are relatively disadvantaged and far from the centres of power, the network has few strong connections with policy-makers.
In practice, network members have been engaged in advocacy efforts for several years since the formation of the Dandelion network. In 2008, Dandelion members started collectively knitting a “Red Scarf” to symbolise the lives of HIV-positive women. The scarf was sent by post from province to province, and women in each location displayed it, added to it and sent in on (C55) ((Although WNAC members did not mention the connection, this is similar to the original AIDS Quilt in the USA, which was a highly effective awareness-raising and advocacy tool in the 1980s. Red is a universal colour used by HIV movements and has no political meaning within China.)). The Dandelion network’s founder describes this as “just like [the Olympic] torch relay” that was occurring at the same time. Knitting the scarf, she continued, “was our new attempt to check whether we, who were united by internet, could come to a collective action” (He TT 2009). The scarf campaign received support from Mangrove, a PLWH support group in Beijing, together with ActionAid China. A Chinese-American filmmaker who is active in HIV circles produced a documentary that was shown along with the completed red scarf at Beijing’s main avant-garde art centre to commemorate the 2008 World AIDS Day. The exhibit later moved to Shanghai and was shown again in Beijing in 2010 as part of a series entitled “The Secret Language of Women” (Yuanfen 2010). Not only was the scarf a powerful symbol of women’s lives and hopes, it was a key mobilising activity for WNAC.
In 2009, after WNAC’s launch, members collected personal stories from around China and published these in an illustrated book, “Writing the Life”, written collectively by women living with HIV, their families and community social workers. The book was released in a public event at a Beijing hotel in November, once again timed to coincide with World AIDS Day. As WNAC’s press release described, “Using a delicate and beautiful writing style, together with photos, the book records the true stories of women living with HIV and their courage and fortitude, as well as their struggles for a fair and equal life and their work to increase understanding among society.”
In 2010, the WNAC secretary general was selected as one of 14 people on the steering committee of the China Red Ribbon Forum, a government-civil society dialogue group on human rights ((The Red Ribbon Forum has no connection to the Red Scarf campaign described earlier.)). “As a person living with HIV, and long speaking openly about it despite the stigma that continues to prevail, I am very encouraged by this forum and proud to be on its Interim Steering Committee,” she said at the inaugural meeting. “For the first time in China, we representatives from civil society – those most affected by HIV – have a real opportunity to discuss key issues on human rights and HIV with the government, and have an impact on policies and laws that affect, and will affect, millions” (UNAIDS 2010).
Up to now, WNAC members have “little to no contact with government”, including the Ministry of Health (C55). “China’s current HIV policies say little about women,” the secretary general complains. “In the HIV law, it states that HIV-positive women have a right to have children, for instance, but other laws contradict this. There are no regulations or implementation guidelines to allow this” (C55). In press interviews, WNAC members have spoken about issues such as access to subsidised treatment and second-line antiviral medication, and called for improved communication and cooperation between authorities and civil society to form “a united front against HIV/AIDS” (She Le 2009). In the secretary general’s view, the government has not been too willing to talk directly with civil society networks; instead, HIV groups often advocate through intermediaries. For instance, WNAC has had some contact with the China Foundation for Prevention of STD and AIDS, a major GONGO with no particular focus on women. At the 2009 international HIV-AIDS conference in Bali, the GONGO’s representative reportedly presented WNAC activities as their own; rather than act offended, the Women’s Network secretary took this as an opportunity to ask for support from the foundation. However, it has not yet provided any specific help (C55).
Other HIV networks have stronger links to government, while still preserving some degree of independence. The coordinator of the CAP+ network says,
With government relations, we’ve always had some difficulties, and also always had some cooperation. There are legal and internal government issues. Every grassroots organization has to deal with these issues – we’re all the same in this way. The difference is in how we deal with it. We don’t have particularly close cooperation with government, but also no particular opposition. We stay focused on issues of concern to PLHIV. We don’t get involved in broader political issues around civil society, democracy and so on. (C64)
The Women’s Network has demonstrated that it is able to carry out collective campaigns and projects for public awareness and mobilise the media. Without stronger government links, however, it is difficult to see how the network will have any major impact on HIV policy using either an embedded or an inside-outside strategy. The idea of advocacy through an international donor dodges rather than answers the question. A more promising alternative would be to build on the network’s existing strengths in community and media advocacy, seeking to add members and change local awareness about issues faced by women living with HIV. The uses of art, poetry and story-telling offer powerfully engaging opportunities to reach ordinary Chinese; in that sense, the set of activities in the strategic plan might be fully appropriate, if concrete objectives were clarified that could meet both members’ capacities and the donor’s expectations.
The mixed role of donor funding
In August of 2010, UNAIDS confirmed that they had received a new proposal from WNAC and were still “designing” the next phase of funding for the network.
“UNAIDS has supported the women’s network for two years now ((By my count, UNAIDS support actually extended for 18 months (January 2009-June 2010).)). Our initial support was for development of institutional governance structures, set up in a consultative way. The network’s work last year  focused on advocacy. Advocacy on HIV among civil society is not well organised. The field is dominated by MSM and PLWH groups, while the women’s voices, sex workers and IDUs [intravenous drug users] are very low. UNAIDS’ strategy is to strengthen these groups and help them form networks. Networks are our entry point”. (C69)
According to UNAIDS staff, their funding strategy is to support networks among HIV-affected groups who are not yet included in formal structures. Seeing “limited gender analysis and responsiveness” in existing HIV programming, UNAIDS seeks to “empower women by providing specific support to CBOs [community-based organisations] and increasing the participation of women’s networks, leaders, and women living with HIV” (Aye 2010). Although UNAIDS has its own core funding, it also acts as an intermediary donor; its network funding in this case originates from the Gates Foundation (C37). In addition to WNAC, UNAIDS support in 2009 also went to CAP+, a separate sex worker forum, a Yunnan drug users’ network, and the International Treatment Preparedness Coalition (C69).
UNAIDS funding is provided one year at a time (C69); the initial grant to WNAC during its preparatory phase was for only six months (C55). Although year-on-year funding is not unusual in the HIV sector ((The US government’s PEPFAR programme (President’s Emergency Program for AIDS Relief) also provides funds on a renewable annual basis. In Vietnam, the only PEPFAR priority country in Asia, USAID has also set up a women’s network of local support groups (Asia Catalyst 2009: 13).)), the grant duration sends a contradictory message to UNAIDS’ stated desire to support the long-term growth of networks. Especially for a new network, short-term core funding may produce high levels of stress and uncertainty and send inadvertent messages that the grantee cannot be trusted, or that the donor is overly controlling. In UNAIDS’ view, the short funding cycle encourages grantees to develop strategic plans and carry out “evidence-based advocacy” (C69).
UNAIDS has encouraged WNAC to link with other Chinese organisations outside the HIV sector. In 2009, UNAIDS introduced WNAC to a Shanghai-based social enterprise group, CSR Pioneers (Gōngyì Táng, literally “charity hall”). UNAIDS hoped that CSR Pioneers would assist WNAC in organisational development, capacity building and fundraising, while WNAC would introduce principles of gender sensitivity and stigma reduction (Douban 2009). A partnership between the two groups was established on paper, but has not resulted in any shared activities to date, and there is no mention of WNAC on CSR’s website or vice versa. UNAIDS also has plans to build an “intimate partnership” between WNAC and the All China Women’s Federation, with similar expected mutual benefits (Aye 2010: 19). UNAIDS hopes to increase participation of women in networks, including the ACWF, and “use them as agents of change in promoting rights of women” (C70). While such a partnership could build on the ACWF’s “dual role” and close links to authorities (Howell 2004b: 62-5, Wainwright 2005), it is difficult to picture how such a partnership might operate given the extreme incongruities between a fledgling civil society network and a massive GONGO with millions of national members.
UNAIDS’ strategy and support for WNAC are well intentioned. Yet the donor’s focus on “capacity building” and national-level advocacy may not match the needs of network members or solve their real problems (C37). The network secretariat seems to spend the majority of its time preparing reports and documents for the donor, and close contact to donors was the primary reason for setting up the Beijing office in the first place. In terms of ground-level results and support for women living with HIV, however, the network arguably provided more before it became formalised and received any donor support.
Regardless of the positive or negative aspects of a single donor’s role, it is generally unwise and undesirable for any organisation or network to depend on only one source of funds (Fowler 1997: 150-1). Yet many newly-formed groups have little choice in the matter. WNAC’s secretary general admits the situation is “not ideal” and is searching for other sources, but finds domestic resources hard to come by (C55). The problem is particularly acute for a national network in a country as large as China, whose members are by definition disadvantaged and relatively poor. Without external funding, members have few resources of their own to draw on to sustain the network’s operations. As noted above, WNAC aims to raise funds through social enterprise, producing and selling handicrafts and books, so that “we can stand on two feet” (C55). Reflecting the dominance of business management approaches among Chinese NGOs and the increasing role of domestic corporate foundations (C15, C23), income generation from social enterprise is a legitimate strategy for many local organisations. But it is unusual and probably impractical for a national network with organisational members who are themselves seeking operational funds. More realistically, WNAC members might engage in a variety of income-generating activities and contribute a portion of the proceeds to the network. No mechanism for such revenue sharing exists yet within the network.
At present, WNAC faces many of the challenges of a “donor-created network”, and that is indeed how some other actors in the HIV sector perceive it (C50, C52, C76). The network did not begin this way, and it still retains many characteristics of its informal, virtual origins as a lifeline among HIV-positive women. With donor interest and funding, the network transformed quickly, perhaps too quickly, from a virtual social network into a formal organisational network before strong horizontal ties could be formed among members in different locations around China. From the donor’s perspective, the network is a “quite slow process… within a few years they will be some of the key voices, [but] now they are still fairly quiet compared to other leaders [in the HIV field]” (C69).
The development of HIV networks in China follows a worldwide pattern observed by the United Nations that “organisations of people living with HIV are initially created to provide mutual support and care, and evolve gradually to play wider and more varied roles in the epidemic response as their capacity and collective voice strengthen” (UNAIDS 2006: 212). A UN meeting in South Africa also recommended that there was “a pressing need to professionalize informal structures to enable them to function effectively and participate independently in high-powered organisations and forums.” But UNAIDS also noted that “Discussions also revealed a tendency for networks to lose touch with the grass roots as they engage with the wider world” (213). How can Chinese networks maintain this balance?
UNAIDS’ ultimate stated goal is to create a single nationwide HIV network co-functioning as the CCM (C69). Such a national association could have numerous benefits: enabling strategic alliances with the state, strengthening member networks and adding legitimacy (Howell 2004b: 13-4). This objective managed to unite the entire spectrum of Chinese HIV networks as never before, but in opposition to UNAIDS’ proposal. As one activist stated, a single network would be “a very bad idea” even if it were achievable. A single voice towards the government would be desirable, but any unified network would make authorities nervous, so they would attempt to control, manipulate or damage it (C50). If donors and government get together to control a sector, the space for networks to advocate independently could be greatly reduced: one HIV activist terms this his greatest concern (C37). In this view, multiple networks are beneficial as they amplify voices of civil society and allow for more people to occupy hub positions. Competition among networks, within limits, is a natural and healthy phenomenon and will lead to survival of the strongest groups (C37).
A centrifugal tendency is also present in the formation of provincial and local networks. The provincial women’s network begun by WNAC members in Henan appears to have occurred spontaneously based on local needs, but could be viewed as duplicating or competing with the national network. The Henan network has received funding support from the US International Republican Institute, after UNAIDS reportedly intervened unsuccessfully to argue that the funds should be given to WNAC instead (C37). On the other hand, the existence of a network in Henan can be considered a major accomplishment, given that several years ago the province was noted for its division and lack of coordination among NGOs, PLWH and the local government (Young and Mian 2008). The Henan network is also integrated into the WNAC structure, which is not yet the case with the AIDS Care-initiated women’s network in the southwest.
From a donor or international NGO standpoint, the experience of WNAC raises questions of how much support or involvement is desirable to help networks form. In a 2007 interview, the Red Scarf filmmaker criticised donor ambitions: “People at the moment feel a lot of the grassroots NGOs are too small, so people get them together in networks or pingtai [‘platforms’]. But this creates the opposite effect of what is intended: frictions, tensions, criticisms.” A better approach would be “a wild flower effect: let them grow in their own way and in the end they cover the mountain” (Young and Mian 2007). Yet the leadership qualities necessary to “cover the mountain” may not be the same as those involved in forming a small group. At present, many WNAC members are strong leaders of local support groups, but this does not automatically translate into an effective national network (C71). The mountain is also very spread out geographically and politically, so that a laissez-faire approach to organising may not result in full coverage.
The common donor response to these dilemmas is to provide “technical skills” and “capacity-building training” to network members. But what skills do members really need? Many courses focus on project management, proposal writing, and other functional competencies that are necessary to work with donors but may take activists further from their own roots, and do not develop vision or leadership (C71). The broader question is what members want out of their participation in a network. In the case of WNAC, women became involved in local and online peer groups for counselling and social support. These groups then joined into a national network in order to reach a wider audience, engage in policy advocacy and attract donor funding – a mixed set of motivations captured variously in poetry, testimonials and logframes.
In principle, gender considerations should be mainstreamed in all development projects, not separated into a sub-sector for women only. In a situation in which existing male-dominated PLWH networks are not willing to change, however, women’s groups have little choice but to form their own network. This strategy could be better combined, though, with increased cooperation with other networks (C62). Once their voices are more equal with others, women’s network members could then look at national collaboration in the long term (C69). This will require overcoming divisions and mistrust that exist between sub-groups and at the local level, as well as better coordination among donors. If these conditions are absent, the Women’s Network against AIDS will continue to be caught between donor priorities and its members’ needs.