“AIDS organizations don’t represent us.”
“Others are making their names with their HIV/AIDS work without producing tangible benefits for people with HIV.”
I’m paraphrasing, of course, but the sentiments and the expression of them should be familiar to anyone living with HIV or working in the HIV field. As someone straddling that line — living with HIV and working in the field — I can see the truths behind the statements as much as I can feel unfairly targeted by them. It’s not a comfortable place to be.
I am very aware that I am privileged and that I have many opportunities to share my point of view on the whole range of HIV issues. As the director of an organization, I sit on many committees with public health officials and I have a big influence on the public positions that my organization will take. Working to fulfill the missions of the organizations I have helped to lead, I have always believed that it is a part of my role to make space for the voices of the people most affected: people living with HIV and people from communities targeted (for want of a better word) by prevention efforts. I have to work to maintain that self-awareness to ensure that my voice is not taking the place of the many others.
At the same time, I am a person living with HIV and there is not much space for me to seek support or to express my personal experiences without compromising my professional role. When I worked in an ASO, it would have been uncomfortable for me to use the services of the organization, provided by my employees, and incongruent to turn to another organization for services my own organization provided. In many cases, I had professional relationships with the people in the other organizations providing those services, so I would have been back at uncomfortable. That feeling persists in my role as director of a provincial coalition of organizations, as I would be willing to bet that it persists for any number of other people living with HIV in similar positions.
AIDS Inc. The term both scares me and disgusts me. I hate to think that there might be people for whom this work is just a job, who think there might be some personal advantage to doing this work that is not a part of the advancement of the whole movement and of improvements in the lives of people living with HIV.
I do this work and I do draw a salary. It is a reasonably good salary, certainly in comparison to people living on some kind of income support, but less so in comparison to the private sector, or even the public service. I do have some motivation to do the work because it allows me to live and to sustain the costs of living, but I know that is not my only motivation and that is not the only motivation of the other people I see around me in this movement. I and they believe in the better world we see as the end result of the efforts we are making.
I do resent the implication that my engagement in the work is less valuable because I am also paid, as much as I also disapprove of the idea that what we do in the community movement can only be done by people with various professional credentials.
I will recognize that many organizations have veered so far into the professionalization of their staffs that people with HIV are excluded, despite their highly relevant life experiences. We are supposed to be informers and mobilizers, not therapists. Organizations ought to take a serious look at the work they are doing and revise their criteria for employee selection so as to be more inclusive and not impose prerequisites that are not absolutely necessary for the work. But if the AIDS organizations all live up to their words — giving hiring preference to people living with HIV who have the basic skills required and accommodating their health needs in the context of their employment — will those newly employed people with HIV also lose credibility because of their paycheques?
Who sets the priorities for the work? AIDS organizations have a certain responsibility to act in democratic ways. It isn’t the Companies Act, more adapted to for-profit companies than movements for social change, that will be the guarantor of those democratic practices. It is the membership of the organizations that must play the role of watchdog and resist the slide toward expediency over democracy. You think your ASO is not responding to your needs? Join! Push! Speak out!
I think it is a part of the mission of any community organization (not just the ASOs) to work to develop the democratic participation of its members, but in the absence of that, this is a job for activism. Teach and learn how the rules work, how to have a say in establishing the priorities of the organization and its work plan. No, these meetings are not everyone’s cup of tea, but the inconvenience of playing that part from time to time can help move an organization in a positive direction. Giving up and giving in will definitely not do that.
In the end, with both of my hats in the air above me, I have to ask if I am part of the problem or part of the solution. I guess only history will tell, presuming that I do anything worthy of committing to the permanent record.