China Development Brief, no.49 (Spring 2011)
Introduction: The following article is a profile of Wang Yi’ou, founder of the up-and-coming China Dolls Care and Support Association which offers support to people suffering from “brittle bone” and other rare diseases. Wang’s career trajectory is interesting because it shows how important other NGOs are in nurturing future leaders in the nonprofit field. Wang was originally turned off by her experience working in a GONGO, but her work in, and collaboration with, some well-known grassroots NGOs such as Yirenping, Beijing Aizhixing and NPI gave her the knowledge and confidence to start her own NGO. Collaboration with GONGOs like the China Social Welfare Education Foundation also proved fruitful as a means of securing a platform for public fundraising, and shows that grassroots NGOs need to consider collaborating with more mainstream players like GONGOs and the government to ensure their long-term survival.
In 2010, the Narada Foundation initiated its pilot project “Ginkgo Partners Support Program”. The selected Ginkgo Partners would each receive annual funding of 100,000 Yuan for three years and a tailored learning program. A total of five talented NGO professionals were selected for that year. China Development Brief interviewed four of them with the hope of sharing with our readers the story of their personal and institutional development through this series of articles. We also take this follow-up as an opportunity to better understand the support program for each Gingko Partner.
Wang Yi Ou: Getting Things Done Diligently
The slogan “Doing pretty well, our love is still strong” gives confidence to patients suffering from osteogenesis imperfecta (OI, also known as brittle bone disease) and also motivates Wang. An OI patient herself, she has long suffered from painful bone fractures. Her own struggles inspired her to help OI patients like herself.
In 2005, Wang went to Beijing to continue her education, majored in accounting and intended to complete the remainder of the last two years of her law courses through self-study. Although her parents worried about her health, they allowed her to start a new life independently. Watching the establishment and growth of the China-Doll Care and Support Association (瓷娃娃罕见病关爱中心), her parents realized that they made the right decision and are more supportive of her work.
While in school in Beijing, Wang learned that OI is treatable with medication. However, access to medical information in cities outside of Beijing was limited and other “China-Dolls” lacked that access. She began to build a website about OI in her spare time to share information with other patients nationwide. From time to time, she also tried to help fellow patients who came to Beijing to seek treatment, picking them up at the bus or train station and arranging for inpatient care. In this way, she made many friends from around the country.
In 2007, she completed her courses and graduated from school. She found a job doing project planning for a poverty alleviation organization. After working there for a while, Wang realized that the organization was a GONGO (government organized non-governmental organizations) and as such would not provide her an environment which would allow her to do the work she wanted to pursue. Consequently, she resigned after having worked there for little more than half a year.
She wanted to go to “a place where she could actually do things.” Coincidentally, Bejing Yirenping Center (for social justice and public health) had just been established. Wang joined the Center as a legal project assistant and researcher where she began to learn about the concept and work of NGOs. Observing Yirenping’s focus helping hepatitis B carriers who encountered discrimination, she saw similarities between the hep B group and OI patients, and began working on the OI issue. Her work on this issue was approved and supported by Lu Jun, the founding director of Yirenping.
By the end of 2007, Wang had researched the OI patient group for over half a year and began thinking of setting up an organization. She later recalled that she was not “determined” to do it until she met co-founder Huang Rufang. Huang was working at Beijing Aizhixing Research Institute1 and had become involved in social work on AIDS since college. After meeting Wang, the two hit it off. Huang’s participation strengthened Wang’s determination to establish an organization.
In May 2008, Wang left Yirenping to set up China-Doll. In the first six months, the Association borrowed office space from other charitable organizations, moving four times. It took half a year for China-Doll to have its own office space.
In May 2009, China-Doll moved into the Beijing Nonprofit Incubator (NPI) where it received free office space, capacity building support, and a monthly subsidy of 3,000 yuan.
During that developmental period, China-Doll was faced with a shortage of personnel, and was able to mobilize a large number of volunteers whose potential was demonstrated at the end of 2009 when China-Doll independently organized its first China-Doll Patients National Conference. More than 400 volunteers helped on every aspect of the conference.
On the day of the conference, China-Doll won approval to establish a special fund affiliated with the China Social Welfare Education Foundation2. Wang believes it is very important to have such a legal public fundraising platform. With limited funding from foundations and enterprises, the ability to accept public donations became vitally important to China-Doll. From the perspective of China-Doll’s development, opening up this fundraising channel was a first step in collaborating with foundations and the government.
Wang recalled that there were low expectations during the early days of China-Doll when there was a scarcity of resources and personnel. They just wanted to “diligently get things done.” However, with the launch of one project after another, new resources and funding channels became available and better conditions were created for future projects. She believes that this development process is “relatively natural”, and subsequently, with “the improvement of the general philanthropic environment, public recognition and support, and the expansion of its own professional team, China-Doll experienced relatively fast development.”
In 2010, Wang was selected to participate in the “Gingko Partners Support Program” sponsored by the Narada Foundation. Her understanding of the “partnership” is that it is not limited to the partnership among the five NGO professionals chosen as Gingko Partners, but also extends to the partnership between the Narada Foundation and the Gingko Partners, because the former is not only a sponsor, but also a collaborator and supporter.
When the Ginkgo Partnership Program started selecting candidates, Wang submitted her own plan for support, which stated that the funding from Narada would mainly be used for her salary and educational expenses, nevertheless, she also intended to use part of the funding to support other employees at China-Doll. This plan is currently under discussion.
With the help of this funding, Wang hopes to improve her theoretical understanding, and her knowledge of management through a Masters of Public Administration program, so that she can better manage the organization as it grows, and not to “become a hindrance to the organization’s development.” It is indeed the Gingko Partnership Support Program’s objective for the individual to systematically realize her own development. Wang also hopes to be able to help her team improve their knowledge of, and professional skills in, the public interest sector.
Wang’s own plan for 2011 is to address the lack of reference material for the treatment of OI and other rare diseases in China, and improve communication with overseas institutions. In June, the Narada Foundation arranged for Wang and the other four Gingko Partners to visit the United Kingdom to exchange ideas with and learn from their overseas counterparts.
Editor’s Note: Aizhixing is one of China’s first HIV/AIDs NGO founded by Wan Yanhai who is known for his outspoken advocacy work on behalf of AIDs patients. ↩
Editor’s Note: The China Social Welfare Education Foundation is a public fundraising foundation that has the authority to raise funds publicly unlike private foundations and nonprofits. Recently, a growing number of public foundations are allowing nonprofits to set up a special fund within the foundation. Nonprofits can then solicit donations publicly for the special fund which are managed by the foundation in exchange for a small management fee. ↩
2010年南都公益基金会试点“银杏伙伴支持计划”，入选的银杏伙伴在未来的3年内，将获得每人每年10万元的经费和量体裁衣的学习计划支持。 该年共有5名NGO人才入选。 《中国发展简报》采访到其中4位，希望透过此组文章与各位分享他们的个人和机构成长经历，并借此及时跟进了解他们的个人支持计划。
“还好，我们的爱不脆弱”这句口号是在给那些成骨不全症的患者以信心，也是王奕鸥为之努力的动力。 她自己本身也是其中的一员，她那瘦小的身体，早早就经历过骨折带来的疼痛。 这为她后来想为这个群体做些什么埋下了种子。
2005年，王奕鸥来到北京继续求学，专修会计专业，同时也打算自修完她那门还剩下两年的法律课程。 尽管父母亲担心她的身体，但还是给她独立的空间，开始新的生活。 如今她的父母亲看到瓷娃娃协会的成立发展，证明他们当初的决定是对的，也更加支持王奕鸥了。
就在北京读书期间，王奕鸥才知道成骨不全症其实是有药物可以治疗的。 而在医疗讯息不发达的京外城市，那些与她一样处境的“瓷娃娃”们根本无从获得这些方面的知识。 于是，她开始利用业余时间建立有关成骨不全症方面的网站，让全国各地的同病之人能够共享讯息。 间或，她也为那些来京看病的病友们提供力所能及的帮忙，张罗接站、住院等事情。 她藉此认识了一些来自全国各地的病友们。
2007年，修完课程的她正式毕业，找到了一份在扶贫领域的工作，负责项目策划。 王奕鸥说，后来才知道这是一家GONGO（政府背景的组织）。 但这里的环境让她觉得不能做想做的事情，最终她在这里呆了半年多就离开了。
她想去“真正可以做事情的地方”。 刚好，那时的北京益仁平刚刚组建。 王奕鸥应聘过去，担任法律项目助理和研究员，在这里她正式接触到NGO的概念和工作方法。 在对益仁平关注的乙肝群体议题的慢慢把握基础上，她也有意识思考与成骨不全症群体共通的地方，并开始介入，她的工作得到益仁平负责人陆军的首肯。
2007年底，王奕鸥对成骨不全症群体做了长达半年的调研，获得了一手的资料，并开始有“成立一个协会去做事”的想法，但她后来回忆道，“当时还没坚定信心去做”，直到与另一位协会发起人黄如方结识。 黄如方在大学时代就开展艾滋病领域的公益活动，当时任职于关注艾滋病议题的北京爱知行研究所。 与王奕鸥接触后，两人一拍即合。 黄如方的参与极大地鼓励了王奕鸥坚定信心，要把“瓷娃娃关怀协会”做起来。 如今瓷娃娃的迅速发展，也离不开黄如方的汗水和辛苦。
2008年5月，王奕鸥离开益仁平创办瓷娃娃协会。 头半年的时间里，协会借用其他公益机构的办公位，一共搬了四次家。 直到半年后，才有了第一个独立的办公室。
这段时间里，瓷娃娃正式力求自身的发展。 在人手不够的情况，他们动员了众多的志愿者参与进来，这在2009年底瓷娃娃协会独立操办的首届瓷娃娃全国病人大会得到充分展现。 大会的每个环节都是由志愿者参与完成。 王奕鸥说，目前报名的志愿者有400多位，活跃的就有几十个。
在当天的病人大会上，瓷娃娃还正式获得在中国社会福利教育基金会下成立专项基金的身份。 王奕鸥认为这样的合法公募平台很重要，在来自基金会和企业的资助寥寥之际，接受公众的捐赠就成为瓷娃娃的重要依靠。 从瓷娃娃的发展来看，这条路子算是打通了，也迈出了与基金会和政府合作的第一步。
王奕鸥回忆起当初，“在资源匮乏人手不足的协会创建初期，没有太多的预期。”只是想“踏踏实实把事情做好就行”。 不过，“随着一个个项目的开展，有了新的资源和平台，也为后来做的事情提供了条件”。 她认为，这个发展的过程“比较自然”，后来“随着公益环境好转，社会公众认可与支持，自身专业团队扩大，瓷娃娃发展相对快了一些”。
王奕鸥希望通过这笔资金的支持，系统学习一些MPA课程做到理论层面的提升，以及加强管理方面的学习，来应对机构做到一定规模后的突破需要，做到“不能阻碍机构的成长”。 真正实现自身的系统成长，正是银杏伙伴项目本身的支持目的。 同时，她还希望有能力促进整个团队成员在公益知识和专业能力上的提升。