At a recent interaction at an ASO (AIDS Service Organization) I was informed by the client service representative that my ID number was one of the lowest he’d seen. That got me reminiscing over the years that have passed but more about the changes that I’ve witnessed in the organizations that were created to serve us.
I’m writing from the perspective of a long term survivor (LTS) diagnosed in 1984, a black gay male living in Toronto who’s been/still am a client, volunteer and employee of said organizations
Until my own diagnosis I hadn’t really thought much about HIV. I was young, the gay community was vibrant and in modern parlance, Toronto was happening. Boasting no less than 30 gay bars, eight bath clubs, an engaged mixed community of “hot men” Toronto was a wet dream come true. Sex, Drugs and Disco!!!
There were often stories in the press about the disease affecting gay “white” men in the US so again no reason for me to be bothered it was in the States, I was black and I had a lover.
Boy, did my attitude change when I found out that I was one of “them”. I was now one of the “Walking Dead” and my days were numbered. Three years according to the medical “experts” was the maximum time I had left. I was pissed - strangely not because I wouldn’t accomplish all the great things that I was sure I was supposed to accomplish but because I wouldn’t see the ending of some television series I was following. Goes to show you the shit that goes through your head when faced with mortality.
The lack of any government response to the AIDS epidemic (it was a “gay illness” after all) forced the gay community to call upon its own resources in creating grass-root organizations to deal with the wide-ranging effects of AIDS. In 1983 the AIDS Committee of Toronto (ACT), the “godfather” of all AIDS services in Toronto opened. Its message: “ACT services are for you. They’re free, and if we’re unable to provide the services that you need, we will connect you with someone who can.”
That became the template for the ASO that followed. The Toronto People with AIDS Foundation (PWA) followed in 1987. In the ensuing years numerous other ASOs opened to deal with race, culture, housing and gender issues as well as the passing of loved ones and friends.
When I first decided to go to PWA my feelings were of mixed acceptance, joy and trepidation. Would I be the only black person there? I was. Would I see anyone there that I knew? I did. There were people - males, gay mostly, milling about, talking and connecting. It was almost like a dinner party after dinner had been eaten. There was a somber underlying tone. I saw people in various stages of the illness, gaunt, their layered clothing covering weight loss, beepers going off to remind them of when to take their meds, bags containing the pills and trying not to be noticed while rushing to the bathroom to deal with side effects or to cry upon learning of a friend’s death.
But there was a sense of belonging too. We were all united by this disease. ASOs were our places of refuge away from the stigma, discrimination, looks, speculation, gossip, whispered conversations and dehumanizing media reports of mainstream society. Our concerns then were what meds others were taking, what the side effects were, who the doctors were.
At times I found the conversations depressing, which is why I eventually stopped going. I heard more about people’s viral loads, Cd4 counts and the number of times they went to the washroom than I needed to know. But it was here that I also discovered who was in Wellesley General Hospital and who had passed away. As the years passed, women, people of differing ages, cultures, races and classes, including women, families and more PoC (People of Colour) began to access the services. We were there for changing needs which were supplied best as could be by the ASOs.
I had replaced the bars, my temple of identity, with the ASO, my refuge of care. And care they did, whether it was with extra money for “whatever,” getting us on Ontario Disability Support Program (ODSP) or assisting with housing. HIV was now of concern to the government and society. ASOs were being created to address the marginalized communities. I was pleased to see the creation of both BlackCAP (finally an ASO to address the homophobia, religion, immigration status issues and intersectionalities faced by people of colour and Prisoners AIDS Support Network (PASAN). Yes there were sex and drugs in jail, for which I was eternally grateful.
However, with the government entering the program there were changes: the “medical” model became the norm. I think we gave up some autonomy. Doctors and public servants now dictated who, what, where and how much. That being said, ASOs championed safe sex and harm reduction practices. The HIV community, in response to the toxic side-effects of HIV medications, lobbied the government and Big Pharma (I really wanted to get that in) for better, more efficacious medications.
At present in Ontario most funding for HIV related services and research comes from the provincial government. Ten percent comes from the federal government via Public Health Agency of Canada (PHAC) who’ve been in the news lately and not in a good way.
The PHAC money for community-based programs has remained the same at 26.4 million dollars for the last few years, distributed through the AIDS Community Action Program. The Ontario Ministry of Health and Long Term Care offer additional funding. The rest comes from local government, United Way and fundraising, the latter typically on the decline.
“When people of passion begin to leave an organization or a community it’s time for self reflection”
But here’s the thing: since antiretrovirals we’re living longer and people are still being infected. There are more of us today trying to get a slice of the pie. Moreover, those of us who are long term survivors and made it through the “dark ages” are having to deal with physical, mental and psychological complications that aren’t receiving the full attention that they should be, not just from the government but from the ASO as well.
Many LTS are pissed and rightly so because they and their martyred friends created those ASOs. Oh we get dragged out, brushed off, paraded around and asked to join focus groups. Every now and then we’re asked to sit on committees that never meet.
As well, the government has seen fit to add HepC and other blood-borne diseases to the issues that ASOs need to deal with. I’m not disagreeing with the logic. It’s the lack of increased funding and other supports that bothers me.
I remember marching, the sit-ins, the sandwiches, the shitty coffee, the cold, wet weather, the police presence, the media indifference, the glares from passers-by, the cussing, jabs, jibes. But I also remember the solidarity, the pride, the commitment.
HIV: Isn’t just somebody else’s problem: it could be yours,
Cover Your Lover
Our battle has not been just about living, it’s about living well. To this end, people living with HIV needed to speak out, not just on health matters but on all matters concerning them.
Thus evolved MIPA/GIPA. (Meaningful Involvement of People living with HIV/AIDS/Greater Involvement of People Living with HIV/AIDS). In essence, no decisions, policies, regulations without consultation with those infected or affected by HIV.
Greeted with much fanfare, it meant that people living with HIV would get jobs in the ballooning HIV sector, sit on the boards, be consulted by ASOs and those making decisions including Big Pharma.
How’s that working out?
In my opinion not so well. It varies from place to place, province to province, ASO to ASO. Overall I think the incorporation has been a failure, words tossed around at conferences, workshops etc. It's tokenism at best in some ASOs.
The reasons vary. In some cases it’s because some organizations have become little fiefdoms where input from people living with HIV has been stifled by others who think they know better, yes-persons. In others it’s because people living with HIV are reluctant to be engaged due to stigma, fear of disclosure. And in some it’s because the boards have no idea what’s going on in their organizations. Then again it could just be that many of us don’t understand MIPA/GIPA.
In all fairness there are ASOs that are true examples of the principles of GIPA/MIPA, evolving and responding to the needs of their clients.
Funding though is an issue when it comes to training and retaining staff. Staff turnover is high due to burnouts, frustration, low pay and myriad other reasons. Let your imagination run wild. I’ve seen good people overworked and forced to leave because of personal differences. Contrary opinions to the new paradigm are rejected outright. Then sometimes to correct a wrong or oversight we swing too much in the opposite direction, balance lost.
We’re human; something we oft times forget. Not all people living with HIV are activists, or volunteers or seek to work in the HIV community. Some just want to go about their lives. But in 2014/15 volunteers contributed $4.7 million < $5.1 million in 2012/13 in equivalent hours in
“We have increased the number of PHA Peers who volunteer with us over the past 4 years from 7 to 65 this past fiscal year” -- Fife House
Volunteers have been the backbone of ASOs from the beginning. It’s inarguable that without volunteers, much of the good work done could not been have been accomplished. As the complexities and needs of their clientele evolved, so did the requirements of ASOs of their staff and volunteers.
To that end, training workshops were incorporated into the process. Training was also offered to Executive Directors and board chairs of AIDS Organizations. In Ontario a specific training program for people living with HIV called PLDI is offered through the auspices of the Ontario AIDS Network (OAN) an umbrella organization composed of 31 ASOs and 11 allied organizations in the province.
All well and good, but there have been rumblings about the lack of advancement available within the sector. People volunteer for different reasons: giving back, a promise to a friend or maybe because they or their family were impacted. School placements and the experience required for employment might also play a part in their decision.
However, due to lack of resources gainful employment doesn’t always happen, leaving many frustrated, so they seek employment elsewhere. But another reason that volunteers leave is because they’re treated like shit, bullied and made to do repetitious tasks on a road that seems to go nowhere. The complaints are of lack of appreciation and of recognition. In rural areas distance, lack of resources, stigma and fear of association make it difficult to keep a full volunteer pool.
Over the years I’ve volunteered at various ASOs, my experiences have varied. Some were good, some not so good. All in all, they’ve been educational. I’ve seen positive changes made in the training of volunteers on so many levels. From customer service to an inclusion of Aboriginal, women’s and trans issues and how they were impacted by HIV. Areas in which as a gay male I was sorely lacking not just information but interest. My bad!! Interagency co-operation and training has “inspired a shared vision”, and “encouraged the heart”.
The experiences have been fulfilling, joyful, emotional and filled me with a new appreciation of what can be shared can make the journey lighter and less difficult. Along the way I’ve made friends, allies and had my values re-examined and reaffirmed.
“The number of volunteers may not be increasing at a high rate, but the quality of work being done is increasing” AIDS Committee of Windsor
I’d like to think that by “modeling the way” and “challenging the process” some of us become employees within the non-profit sector. For those who do, myself included (I’m job-hunting, by the way), it is an eye-opener.
Funding remains an issue and always will. The recession has maintained funding levels as they’ve been for a number of years. Additionally, political will and platforms have impacted priorities. Conservative vs Liberal vs NDP. Harm Reduction vs Abstinence.
Students doing placements increased in 2014/15, leaving paid employees more time to assist clients. People living with HIV supplement paid employees in a variety of ways.
Working at the HOP (Homeless Outreach Program) and sharing parts of my story and seeing light return to their eyes. Priceless!
What I do find ridiculous is the official policy of not refunding programs that work and are beneficial to the HIV community. So programs have to be either ended or redesigned. Also, much time is spent on filing government documents or entering stats into OCHART (Ontario Community HIV and AIDS Reporting Tool), even if that is necessary.
The government has mandated changes, more capacity building, identified Priority Population Networks but hasn’t granted the ASOs the tools. We need to engage people to ensure that we have qualified people to continue the charge, ED’s in training etc. And we need to transform, employing social media, further outreach and “engaging others to act” by sharing power and trust, especially in our peers.
By 2025, new HIV infections will be rare in Ontario and people with HIV will lead long healthy lives, free from stigma and discrimination. -- OCHART 2016
I Hope so.