Living a life of courage and activism

The Report: January / February 2003 vol.24 num.1

by PAUL DAYSON

he day after World AIDS Day, Rick Barnes is reflective. It’s personal this year. Steven, his partner of six years, died from AIDS in June.

“World AIDS Day had new meaning, and standing in line with a candle was a bit overwhelming,” said Barnes. “It was no longer theoretical, but a personal act of remembrance.”

As AIDS Vancouver’s communications coordinator, Barnes’ job encompasses building relationships with community organizations, government and the media as well as public relations and work on strategic planning for the organization. Until recently, he was also HSA’s chief steward, advocating on behalf of 45 union members.

At 44, having his job and activism become personal is nothing new. “We are becoming a society of people who want things done for them,” he said. And Barnes believes you have to work for what you want, and if necessary to put your body on the line.

Barnes is one of 5,000 people in North America participating in a groundbreaking HIV vaccine trial. It is the only HIV vaccine trial in the third – and last – phase, and is the most advanced of its kind in the world. The trial also includes 10,000 participants in Thailand.

“Most people are shocked that you’d want to take part in a trial,” Barnes said. He falls within the risk group of “HIV negative within a risk category as a gay man or IV drug user” that the trial required.

After three and a half years in the trial, he is still HIV negative, and the drug company developing the vaccine is looking at a 35 per cent success rate. If they make it, it is likely the US Food and Drug Agency will approve the vaccine for wider use.

As a union activist, personal activism has also been Barnes’s credo. During a postal strike, when he was the president of the South Cariboo Labour Council, he joined Canadian Union of Postal Workers members on a 24-hour picket line to stop the delivery of mail by scab contractors. “The truck was going to back up, so another picketer and myself laid under the back wheels.” The truck stopped, and eventually left.

Barnes credits the union movement with providing him with many of the skills he now uses, including mediation and negotiation skills. “The union offered all kinds of training, which at first glance looks very specific, but actually provides tools that are useful in your life, such as for negotiating your mortgage or as a community activist,” said Barnes. “It was also good training for being an executive assistant to a cabinet minister.”

An NDP activist since 1983, he worked as executive assistant to former cabinet ministers David Zirnhelt and then Tim Stevenson before joining the BC Persons With AIDS Society, and then AIDS Vancouver.

Barnes is encouraged by HSA’s expansion into community organizations, smaller agencies and advocacy groups. Having a union to represent the interests of the workers at the agency is good for staff – and good for the agencies. These smaller organizations, such as AIDS Vancouver, have fewer resources and are dependent on fundraising.

Faced with financial pressures, agencies often sacrifice services and staff. In a unionized environment where terms of employment are achieved through collective bargaining, staff can focus on the needs of clients and the organization with fewer worries about whether they will have a job to return to the next day.

And there is a mountain of work ahead for AIDS Vancouver as the Liberal government continues to strip down government support for those who need it.

When the province proposed changes to the Residential Tenancy Act, AIDS Vancouver put together a brief for MLAs about how it would affect clients. The brief took issue with automatic rent increases and monthly inspections of units.

“HIV is a very personal disease,” said Barnes, adding that when persons with HIV are still denied apartments and suffer from harassment, monthly inspections are particularly onerous. “Landlords can see you when you are not well or discover that you are HIV positive – seeing your medications,” he said. “It takes away the sanctuary of your home.”

AIDS Vancouver sent the brief to every single MLA. Only Jenny Kwan, the MLA for Vancouver-Mount Pleasant, contacted them to talk about it. “The current government talks a lot about consultation and then presents an end result in the form of legislation or regulation that indicates that they didn’t hear what we were saying or disregarded what we had to say,” said Barnes.

The move by the Liberals to require people receiving disability benefits to reapply is dehumanizing and is creating a great deal of anxiety amongst AIDS Vancouver’s clients, according to Barnes. The 23-page form must be completed by a doctor and a social worker and he worries the time it takes doctors to complete it means many people with AIDS will lose their benefits or have them reduced by not meeting the March 15 deadline.

“They are dealing with a life-threatening disease, struggling to make ends meet on $826 a month,” said Barnes. At the same time, out-of-pocket costs are increasing as drugs are being delisted – like those to deal with the side effects of the drugs combating HIV.

Having good housing, health care, adequate food and pensions, as well as human rights are determining factors in making better decisions and are of direct relevance to people living with or vulnerable to HIV, he said.

“Right now people in the province feel disenfranchised and those marginalized are worse off,” said Barnes. “It is important for unions, community organizations, and church groups to work together to find solutions and to pressure the government. It has to be a real partnership.”