Social Service Or Social Change: Building Political Power for People with HIV/AIDS



JASON WALKER: The AIDS work of the past really was spearheaded by, you know, AIDS activists
and LGBT activists, namely with ACT UP and a lot of other groups of individuals
really fought for the rights for people living with HIV/AIDS: the right to
live, the right to access to health, the access to medicine. CHE GOSSETT: There's been the creation of AIDS service organizations that really arose out of,
kind of like, AIDS activists' grassroots movements. So like ACT UP and other
movements. And that's been beneficial in terms of providing, you know, needle
exchange, harm reduction services. But also the flip side – it's been
kind of evacuated or split, like divorced the activism piece from the
service provision piece. IMANI HENRY: Particularly for trans people, we've got stuck with like:
it's about services. And it's very deep for me. When I was involved in
TransJustice, when we first, you know, launched TransJustice here in New York City, it
was very hard for people to understand that we were organizing. Because all, and
still to this day it's true, I mean even though that was like nine years ago, most
of the money and funding out there for trans-related quote-unquote people in
general is about behavioral health or HIV health. So it's about your medical
health or it's about behavioral, you know, it's like, they need services. And it's
all about services. And it's been really difficult, it was very difficult to get
people to understand that no this is not a support group for trans people. We're
going to do political organizing. And again The Advocate was like, this is
by and for and people were like, oh so people are going to be advocating for trans
people. And it's no no no, trans people are going to be doing political organizing.
Do you understand that? And well-meaning, well-intentioned, but never – the concept
hadn't been there for people. JASON WALKER: Grassroots work, if it's really truly
grassroots, it's about going into the community and building power among those
people. And what we mean by building power is giving people the tools of
advocacy to empower their lives so that they can help, you know, shape public
policy and really help and change and evolve and develop their community. But
we see now with these professional nonprofit organizations, we see them really just
advocating on the behalf of people. If you look at, you know, the real grassroots
movements that we refer to as, like the Civil Rights or the Black
Panther movement, these were movements. Or even the LGBT or the AIDS activist
movements of the past, it was about people who were directly impacted taking
ownership of their struggle, taking ownership of their oppression, and really
doing what they can to galvanize their community to build power, to really
secure their community and basically improve it. So now what we see now is
organizations really just doing the work for the people and really taking away
that power that is really needed to lead to long-lasting, permanent social and systemic changes. CHE GOSSETT: You know at service provision organizations they're run
hierarchically, and they kind of can resemble corporate models which is true
of a lot of nonprofit structures. And so that's really different than like
AIDS activists for instance or a grassroots mobilization which is
supposedly, you know, supposed to be more democratic and more horizontal in their
leadership. So it means that at an ACT UP Philadelphia meeting I'll be in
the room with homeless folks, folks living with HIV/AIDS, and you know, kind
of directly impacted people. Whereas like if I'm doing a service provision, it's a
necessary thing, but it's also kind of like having a position of
professionalism or credentialing and power, really, and being a gatekeeper
for certain things. So it's really trying to push back, like grassroots
mobilization against these forms of verticality. JASON WALKER: If we really want to be
about social change, we have to dismantle oppression and social hierarchies,
right? I think usually the models of nonprofits pretty much fit the
model of what we see as oppressive hierarchies whether that's in Congress,
being dominated by, you know, white older men, and just these models that that we
see. In the nonprofit world, we see oppression and sometimes we recreate
those models. Because we see success as being… we model our success out of the
oppression that we experience. CHE GOSSETT: PEPFAR, for instance, is the Presidential
kind of like AIDS fund that was commissioned kind of during the
Bush administration. And there's a lot of strings attached to who gets
money, international HIV/AIDS money from the United States, and most
nonprofits that receive money have to have kind of like a politics that
isn't… that's anti-sex work, basically. They don't fund, it can't
go towards sex worker activism, for instance. So people find like loopholes,
but in terms of international aid and funding,
oftentimes there are those strings attached. Yeah, so oftentimes it perpetuates the
same type of colonialist, kind of like Western mentality. JASON WALKER: I ultimately feel like decisions are being made by big organizations and the decisions are
being influenced by either the board or by funders or by grants or really just
upper-level executive staff members, right, who did research, they know the
numbers, they know the policies, they know the facts, but they don't
know the lived experiences sometimes. Oftentimes that's missed. And I think that's
a critical and key part, is understanding what are those everyday lived
experiences. Like we know what policy looks like, we know what policy
should look like, but sometimes, often we might not know what those policies feel
like, right? And as people, when we work on policies for low-income communities, when
we work on policies for people we're not directly identified with, sometimes we
can understand what might be the best policy for them, but not really
understand how those policies directly impact or feel to them. That's why it's
necessary and critical that those voices and those people and those experiences
are always a part of our process, just as much as we advocate that they should be
a part of the political process.

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