How do you resuscitate the HIV/AIDS movement?
Instead of reviving the HIV/AIDS movement, we should focus on empowering those who are directly affected, says HealthMaker and activist Sean Strub. In this video, he discusses the importance of community in reducing the stigma and improving outcomes.
Transcript
[MUSIC PLAYING] So I think that we need to go back to supporting these networks of people with HIV. Having people with HIV engaged in a greater
and more meaningful way in the development of policy.
I don't think you resuscitate that unless there's a similar kind of threat and fear. I think that the prescription, if you will,
is to go back to what was so effective in the early years of the epidemic about empowering the people who have the virus.
There are all these anti-stigma campaigns that are about bus ads and billboards and whatever, whatever. And I think in terms of reducing stigma, most of those
are useless or even counterproductive. You can raise awareness of the epidemic and increase stigma at the same time.
The only way to really effectively reduce stigma is to empower the stigmatized.
I'm much more concerned about giving people who have the virus and the people who are being stigmatized the tools to manage their condition
and improve the quality of their lives than I am about trying to change the minds of the stigmatizers.
So I think that we need to go back to supporting these networks of people with HIV. Having people with HIV engaged in a greater and more
meaningful way in the development of policy and implementation of policy and delivery of services.
That was an important part of the epidemic in the early years. Sometimes people talk about the 1980s and the community's
response to the epidemic, the LGBT community's response to the epidemic, in almost nostalgic terms.
And what they are nostalgic for was that very powerful sort of community-wide sense of love and caring
where you saw really, the very, very best face of the gay community being presented to the world. A world that hadn't thought of it as a community
before or thought of it only in sexual terms. And you saw the millions of acts of heroism.
People who totally turned around their lives in order to care for a neighbor or friend or someone.
And that was all part of the empowerment movement. The health care system wasn't serving us then.
We were being allowed to die by the agencies that could have done something. So the self-empowerment movement was really
a do-it-yourself movement. It was saying let's take care of each other. Let's start research organizations. Let's start buyers clubs.
Let's be each other's experts. And do it ourselves.
And that created this whole parallel service delivery structure. The big AIDS organizations, Gay Men's Health Crisis,
AIDS Project Los Angeles, San Francisco AIDS Foundation, they were started by people within the community. Their boards of directors were people with AIDS
and their partners and their closest friends. They never had board meetings where they talked about "them" referring to the clients because clients were right there.
And it was a peer-to=peer service delivery model that over time, much of it has incrementally reverted back
to the more traditional benefactor victims service delivery model. So the things that we can do will
be to go back to that peer-to-peer model that we know was so effective and support the empowerment of the people who are most directly affected.
That will reduce stigma. That will produce better health outcomes at less cost. [AUDIO LOGO]
hiv aids
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