16 June 2008


I had the honour of being asked to make a speech about the GIPA Principle (Greater Involvement of People with AIDS) at the opening dinner of the Canadian AIDS Society Annual General Meeting this past Friday. I thought I would share the contents here.

GIPA In Action or Inaction?

We have spent a lot of time over the last few days in the Forum and associated activities talking about the GIPA principle. I hope we will continue to talk about the GIPA principle over the next two days as well.

More than that, however, I hope that everyone here and those in the movement who cannot be with us tonight will go home and move beyond talking to actually do something about the GIPA principle.

Why don't we start at the beginning, at the origins of GIPA? Since this is old news for many here, I'll keep it brief. In 1983, the Denver Declaration expressed the point of view of the people living with HIV who had gathered together there that personal experiences must shape the response to HIV/AIDS. This was formalized as the GIPA Principle at the 1994 AIDS Summit in Paris, signed by 42 countries. In 2001, 189 United Nations member countries endorsed the GIPA Principle as part of their Declaration of Commitment on HIV/AIDS and in 2006, 192 member states of the United Nations participating in the High Level Meeting on HIV/AIDS unanimously advocated the greater involvement of people living with HIV.

Seems pretty unanimous, doesn't it? Surely it couldn't be the case that the governments of the world would agree to a principle of such importance and then do nothing to apply it?! This is the point at which you probably expect me to count the ways that our governments — at every level — are failing to live up to their commitments to involve people living with HIV in the response to this epidemic. They richly deserve that, I would agree, but that is not why I'm here tonight.

What I am here to do instead is to ask you all if your own houses are in order.

Our parents and teachers have told us over the years that when you point at someone else, there are several fingers pointing back at you. So before we accuse our governments of ignoring their commitments, and before we decry the discrimination of the private sector with respect to people living with HIV/AIDS, let’s take a step back and examine what ASOs can and should be doing.

You’ll pardon me if I use examples from my own experiences tonight. It isn’t that I think these are magic solutions that would be applicable to every organization. It’s just that I want to show you what it can look like to try.

Cette année, les organismes membres de la Coalition des organismes communautaires québécois de lutte contre le sida ont adopté des nouveaux critères d’adhésion à notre coalition. Comme dans l’ancienne version, la COCQ-Sida exige chez ses membres une participation et une représentation des personnes vivant avec le VIH-Sida au sein de l’administration des organismes, et un nombre significatif et approprié de sièges sur leurs conseils d’administration réservés aux personnes vivant avec le VIH-Sida. Ce que nous avons ajouté cette année, c’est une énumération des différentes sortes de participation que nous attendons pour les PVVIH. Je les reprends ici.

Décideurs. Les PVVIH doivent faire partie des instances de prise de décision ou de définition de politiques et notre contribution doit avoir la même valeur que celle des autres membres de ces instances.

Experts. Les PVVIH doivent être reconnues comme une source majeure d’informations, de savoir et de talents et doivent pouvoir participer à l’élaboration, à l’adaptation et à l’évaluation des interventions.

Exécutants. Les PVVIH doivent pouvoir jouer les rôles effectifs d’exécution, en tant que soignants, éducateurs/éducatrices et intervenants de proximité. Nous devons participer à la mise en place des interventions et avoir notre mot à dire dans le mode d’exécution de ces interventions.

Orateurs. Les PVVIH doivent servir de porte-parole dans les campagnes visant à modifier des comportements, et doivent prendre part aux conférences et réunions non pas seulement pour partager nos points de vue, mais pour participer activement à l’identification des orientations, des campagnes et des politiques.

Contributeurs. Les PVVIH doivent pouvoir participer aux activités publiques concernant le VIH-Sida. Nous devons être les premiers à contribuer au discours officiel, avant les personnalités publiques ou connues.

Auditoires cibles. Les activités et les messages qui visent les PVVIH en masse doivent quand même prendre en considération que nous sommes des personnes riches de nos expériences et non pas seulement des images anonymes, des utilisateurs/utilisatrices de services passifs ou bien des « patients ». Nous devons avoir la possibilité de fournir des réponses qui peuvent influencer les sources d’information.

Examinons de plus près deux de ces rôles et qu’est-ce que nos organismes devraient faire pour assurer la participation des PVVIH à ces niveaux.

Premièrement et peut-être le plus évident, nos conseils d’administration. Plusieurs organismes ont un ou des sièges réservés aux PVVIH et identifiés comme tels. Quand le siège réservé est vide, il n’assure ni que l’organisme ait le bénéfice d’une représentation PVVIH sur son c.a., ni que les PVVIH membres de l’organisme aient la chance d’influencer les directions prises par leur organisation.

Dans un tel cas, il faut absolument que l’organisme prenne le temps d’analyser et d’adresser les raisons pour lesquelles des sièges réservés ne sont pas occupés. Si c’est parce que les PVVIH membres de l’organisme ne se sentent pas en mesure de remplir les fonctions des membres d’un conseil d’administration, il devient le rôle de l’organisme de développer et offrir un programme de formation visant à les préparer pour le rôle.

Si c’est parce que les PVVIH membres de l’organisme craignent s’identifier publiquement, l’organisme doit trouver une autre façon d’assurer la réservation de sièges, telle qu’établir un pourcentage de sièges réservés aux PVVIH sans identifier quels sièges qu’elles occupent.

The second role it is important to examine is that of the implementer. We have had a tendency to move away from what has been the traditional role of the community organization toward something that looks a little too much like the health care system. This change has made organizations adopt the point of view that only professionals can intervene and do the work that we do. By doing this, we are excluding the possibility that this kind of work can be done by any of our volunteers, including our PHA volunteers. We complicate our job descriptions and raise the basic requirements to levels that exclude many more from the prospect of employment. We all know that employment and employment discrimination is one of the issues that preoccupies our members, but what are we doing about it? How many employees in your local ASO are themselves HIV positive?

Here, there are a number of things that can be done by the organization to ensure that it is an employer offering opportunities rather than barriers to PHAs. We have to start by being realistic about what we expect from our employees and what we build into our job descriptions in terms of tasks and qualifications. We need to ensure that our job offers are directed first toward our members and that this is a real invitation and not some kind of going through the motions. I can tell you here that, in the experience of my own organization, the degree to which we have taken seriously our attempts to recruit qualified PHAs for our permanent positions has borne fruit over time. It started slowly, but as our members started to see that they had a realistic chance at being hired, they applied for open positions in greater numbers. Now, there is almost no job offer that doesn’t elicit several applications from among our members.

There’s more to this approach of preparing the organization to be institutionally open to PHA involvement. Over the last few years, my organization has adapted its policies to include elements encouraging PHA involvement at many levels, culminating this year in our adoption of an AIDS in the Workplace Policy, outlining our commitment as employers to accommodating the needs and protecting the rights of PHA employees, and a Declaration of Support for the GIPA Principle, which outlines the steps we have taken and will take to encourage and facilitate the greater involvement of people living with HIV/AIDS in the organization. We enshrine our practices in policies to ensure their lasting impact, and we make all of our policies available on our web site in order to ensure that our members have access to them and others might use and adapt them to their own realities.

If we can’t establish ourselves as model employers for the hiring and the accommodation of people living with HIV/AIDS, how can we expect any other employer in our community to take seriously our demands that they do the same?

There’s another side to this whole question of GIPA. That’s the side of the people living with HIV/AIDS, our readiness and our willingness to get involved. Some of us need to be willing and able to step out of our roles as receivers of services to take on new roles in all of the areas I described earlier.

We have to be ready to speak up to correct the image of people living with HIV that is projected in public. We have to be ready to put a face and a voice to public messages about HIV/AIDS. We have to participate with seriousness in conferences and meetings to ensure that our experiences are reflected in the orientations and the policies that are adopted. We have to step up and take on roles of caregivers and educators, accompaniers and managers. We have to share our own expertise and lived experiences to ensure that programming reflects our realities and our needs.

And if our organizations don’t respond to what we expect of them, we have to be ready to step up and exercise our power and our legitimacy to ensure that the organizations change their procedures and practices. Complaining on the sidelines won’t accomplish GIPA on the ground.

None of this is easy. It requires effort on the part of organizations and it requires effort on the part of people living with HIV/AIDS. I very much hope that we are not all here to do the easy thing, but that we are involved in this movement to do the right thing.

Thank you. Merci.

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