“Family means no one gets left behind or forgotten.”
David Ogden Stiers
A close friend was recently asked whether there’s a need for a local people living with HIV (PHA) group in Victoria. The question is an interesting one and simple to answer. While there are regional and provincial PHA groups there are not a lot of local groups across the country.
As people living with HIV we are in a socially and politically precarious position. Worldwide the pendulum is swinging in both directions. In Canada, we aren’t exactly considered criminals, but we aren’t completely safe from prosecution. In Greece, they’re reinstating a law where people suspected of having HIV can be arrested and mandatorily tested. In Canada, many HIV-negative gay men, in recent surveys, would like to see people living with HIV sent to the colonies. Hatred and fear of HIV abounds.
We live in interesting times.
Inasmuch as provincial and regional PHA groups can act as advocates for the big picture issues of HIV – testing, treatment, income, etc. they can’t adequately respond to the personal needs of PHAs that live in towns and cities other than the home base. While these groups can create access on the internet, there is no personal contact. I can’t just drop into the Positive Living BC office and chat about my life and the issues I experience – the trip takes three hours one way and the cost is prohibitive. The same would be said for people living in any part of the country, Toronto, Montreal, Halifax… all these centres might have some ways to provide connection, but the connection isn’t personal.
This is not to say that these groups don’t do good work – they do, but they simply can’t put resources in other communities to meet the needs and interests of rural or removed PHAs.
The benefit of having a local group is the direct and personal connection. People in local groups know the community, connections to resources, the sociopolitical climate, and the idiosyncratic natures of each small or large town. In Victoria I can drop into the local office and meet with other people living with HIV with ease. A monthly magazine can’t replace that face to face interaction.
We know that being connected is important to our mental, physical and emotional health – remotely connecting doesn’t truly meet those needs. Facebook groups and other social networks might provide a sense of connection, but you can’t meet for coffee with a compatriot when they live 4000 kilometres away.
Local groups provide the foundation for community and for people living with HIV, where the ugly face of stigma and discrimination are close by, knowing that there’s a place where we don’t have to explain, where we aren’t considered “dirty”, where we can talk about medications and side effects and sex without fear of raised eyebrows is incredibly important. Again, regional and provincial groups can’t provide that space for everyone in their respective regions. Local groups provide the room for discussion, social interaction, information, the reduction of isolation, advocacy and a host of other activities that bring us together and raise awareness in the community about the reality of living with HIV. They bring “the face” of HIV to the general public that is blithely unaware we exist – or would rather we die and decrease the surplus population to quote Dickens.
I’ve heard that for people in small centers, informal PHA groups exist. They may not have funding, drop-ins or websites, but they provide social connection and support and a safe space to simply “be”. We are family and we need to belong.
Is there a need for local groups?
Read my lips…