Last week I wrote about the Denver Principles, GIPA and the degree to which HIVers in Ontario are engaged with the HIV/AIDS community. To recap, statistically the majority of them are not. Of the 17,000 or so Ontarians who are HIV-positive and know it, only 5,000 or so are using the service of an AIDS Service Organization (ASO) which right now is the only measure that’s available to record HIVer engagement.
Of course counting the number of HIVers entering the doors of an ASO says little about their actual engagement, but it’s a start. And it doesn’t help at all in tracking those HIVers who work largely outside the ASO framework, like for instance, myself.
We also learned that based on the research contained in Living and Serving (1996) and Living and Serving II (2007), some ASO’s have some way to go in being truly “GIPA-compliant” places. Living and Serving II recorded only slight improvements in the situation since its 1996 predecessor report was published. And of the twenty recommendations in the 2007 document, only four by my reckoning have been implemented, with another two a matter of interpretation. That leaves fourteen out of twenty remaining unaddressed
I encourage folks to read the 2007 research findings, in particular the recommendations found on page 53-54, and see for yourself. It’s here.
Two words of caution in interpreting these results. Firstly, they relate only to the “Community AIDS Movement” in Ontario, which roughly translates to ASO’s. Thus, any HIVer activity taking place outside the doors of an ASO will not be reflected here. Secondly, even since 2007, there are some notable GIPA success stories - in using HIVers as peer researchers, for instance, and in peer-delivered programming, like facilitators, "survive and thrive" trainers, poz prevention and chat room interventionists. Still, there is clearly a long way to go.
I’ve always been of the belief that criticizing without offering solutions is both mean and unproductive. So . . . here are four suggestions to get the GIPA wheels somewhat better oiled.
1. Let’s drop the notion that GIPA relates principally to the work of ASOs. That assumption is as exclusionary as all get out. Why?, It looks at the role of the 5,000 using ASO services while ignoring the 12,000 who, for various reasons, don’t. This change in focus is a cultural shift that is entirely manageable, but it entails addressing issues that have never really been addressed before, so some innovative, outside-the-box thinking is required to make this truly work. Let’s talk to those 12,000 - not just those HIVers always at the table - and engage, engage, engage.
2. We know little/nothing about the 12,000 who don’t use ASO services. Togther with the 5,000 who do, they all need to be given a much louder voice than our current community structure permits. The membership of both the OAN (Ontario AIDS Network) and CAS (Canadian AIDS Society), fine organizations both, is made up of ASO’s, not HIVers. Both organizations have significant poz representation on their boards, and that’s a plus. But that handful of HIVers falls well short of providing a voice for ALL HIVers, who, in any event, played no part in their election. The only viable solution is to create that voice in the form of new HIVer-focussed organization(s) at the provincial and/or national level independent of ASO networks, run by HIVers for HIVers. A crazy idea? Hardly; they already exist in many other countries, notably the USA (NAPWA), the United Kingdom and Australia.
3. In trying to downplay the role of ASO’s as the sole entities responsible for implementing GIPA (see 1. above), we must nevertheless recognize their important role in leading the way by example. Clearly, if we use Living and Serving II as our evidence, some agencies could have done more. Having said that, we need to know why. Are there, for instance, real obstacles, structurally or culturally, that we don’t know about? My impression is that there is in fact a collective commitment to GIPA almost everywhere, even if that commitment has not always lead to measurable concrete results. Let’s see what the roadblocks are and strategize around them.
4. Again, I’m trying to avoid suggesting that ASO’s are the be-all and end-all of GIP implementation when clearly they are not. They are just players, but important ones. On occasion, impassioned Hivers’ voices have suggested that ASO funding be conditional on GIPA implementation. That is problematic on several levels. Cutting funding would hurt us all, nor is there an appetite from our funders for a “policing” role. Nevertheless ASOs should be accountable to those they serve, and that accountability should be measurable, but there is no real process for that to happen. We need something like a report card for each ASO, an independent assessment, conducted by HIVers for HIVers, as to how thorough GIPA implementation is in each ASO. I can already see petticoats raised at the concept, but the only problem conceptually is the logistics of conducting such a task. In any event, there are clues to the content of the scorecard in Living and Serving II (refer to page 74, Appendix 2 of that report for a suitable framework.)
If the foregoing implies the way ahead is easy, it isn’t. But first comes a cultural shift which in many ways and many places is starting to happen. HIVers already have SCORES of allies in ASO’s for instance, and to suggest it’s an us-against-them scenario is entirely wrong. Some of our best, most eloquent HIVers, for instance, people like Murray J and Jay K. work in ASO’s and use their jobs as platforms for talking GIPA. I admire them immensely. I hope that nothing I have said here downplays the very real contributions that these folks have made.
By the way, I don’t buy the efforts by a few to change the name of GIPA (Greater Involvement of People with HIV/AIDS) to MIPA (Meaningful Involvement of People with HIV/AIDS) It implies we have conquered the greater involvement issue, now let’s concentrate on the meaningful involvement. That’s false. Worse, the name change is a classic case of GIPA non-compliance – presenting something as a done deal, with no HIV community consultation. Let’s be clear: GIPA and MIPA don’t mean the same thing. The use of MIPA merely muddies the waters. It remains greater involvement we are looking for, at least in my book. That it’s also meaningful is a given.