A summary of the speech delivered by Shelley Martin, executive director of the Centre for Community Wellness at the University of California, Berkeley, to the Communities in Control conference 2004.
Shelley Martin, executive director of the Centre for Community Wellness at the University of California, Berkeley, shared with delegates at the Communities in Control Conference five stories of inspiration, change and success in health and well-being fields which have been brought about when local communities have taken control and made decisions.
Ms Martin's first story was drawn from her times as an AIDS Education and Prevention Co-ordinator for Mendocino County, California, and centred on how consultation and communication changed the way HIV testing was done in the area.
"I was told by the county health department that I had to bring gay men into the health department to sit through classes on safe sex and that I had to get them to come in for 'anonymous' testing that was set up for gay men only on one day a week at a specific time. 'Well, what's a girl to do?' I thought to myself that if I were a gay man, I would be the last person I would listen to. So I called my friend Henry and asked him what I should do," she said.
"Henry had already lost many friends to AIDS and he thought it was important to mobilize the gay community. Henry told me that he had been wanting to have a party and asked if my program could help pay for it, help pay for bodyguards in case any 'homophobic rednecks were interested in making trouble,' pay for food, condoms and risqué safe sex videos."
Ms Martin's department funded the party, which led to the formation of the Billy Club. Following the first party and before the second, party organizers had urged attendees to get tested for HIV. But the response was that gay men were not going to attend the health department on days where there was "anonymous testing for gays only".
Because of this feedback, the county changed the way it did business, integrating HIV testing into regular clinic time. Testing rates rose and the health department was seen as friend, not foe, while the Billies grew to number some 5000.
Ms Martin then talked about San Franciscan Cleve Jones and his founding of the Names Project AIDS Memorial Quilt – started after many of his friends became sick or died of AIDS: "Today, the quilt has over 45,000 panels from every state in the U.S. and honors more than 82,000 people. The quilt is the size of about 47 football fields and it weighs more than 54 tons. Over 15 million people have visited the quilt. And there are quilt projects in 43 nations including Australia," she said.
"This quilt pushed major health organizations and government entities, which were slow to respond, to get moving and doing. And it was the catalyst to strengthen the rights of people with disabilities to include HIV and AIDS. The actions of a small group of individuals, from which the AIDS Memorial Quilt emerged, have affected millions of people all over the world and has given them a way to take action and make a difference at a time when they may have felt hopeless and powerless."
Ms Martin shared with conference-goers through pictures and words the inspiring story of Aneice Taylor, who after becoming a quadriplegic, started a non-profit called In Spirit which aimed to raise money for attendant care for quadriplegics.
"Aneice is an example of the leadership that is critical to the success of any community organization. Strong leadership empowers and inspires others to have the confidence to become effective advocates. And leadership and advocacy are essential to making positive change and sustaining change," she said.
Community action against Genetically Modified Organisms (GMO) was the focus of Ms Martin's next story; one which told of Mendocino County residents' successful fight to make it the first GMO-free zone in the United States.
This made for strange bedfellows, as local farmers and local residents, as well as local environmentalists and fishermen; joined together to fight the multi-billion dollar companies producing genetically-modified products. This down-to-earth campaign in the community overcame the hundreds of thousands of dollars pumped by corporations into the other side of the argument.
"The lesson learned from this is that a small group of leaders and activists can move mountains. Another lesson to be gleaned from this example is that perceived outsiders are rarely trusted or welcomed by communities, whether they have good intentions or not, or lots of money and resources or not," she said.
"So we need to be mindful as government officials and health care experts that we cannot move forward with communities unless we are perceived as the community."
That latter point came to the fore in Ms Martin's last story about her own centre's Wellness Guide and how the centre's "participatory approach" highlighted what could have become a glaring problem:
"So we began our process, as we always do, by going to the community. We met with people with disabilities and disability leaders throughout California. And what they told us was that they didn't want a separate guide. They said that since disability is a part of life, our guide should be inclusive of the many issues faced by people with disabilities and their families," she said.
"This way it would be sure to reach people who have a disability, including those who self-identify and those who do not. And it would let the mainstream population know that people with disabilities are not hiding or going away.
"And we listened to the disability community and we changed our preconceived opinion about what would work best.
"We formed an Advisory Committee that met regularly, twice a month in the beginning and once a month as the project was winding down. Everyone decided that the guide would show people with disabilities engaged in all activities of life—for example—working, commuting, going to school, in sexual relationships, parenting, and staying well and exercising, to name a few."