HIV- Who Are The Real Experts?

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July 21, 2012 By specialguest

A guest post by Jennifer Lentfer of

The first and most challenging exercise of the day when I took a seminar from The OpEd Project required me to fill in the following blanks and share with the group:

Hello, my name is______________________________________.

I am an expert in_______________________________________.

I am expert because___________________________________.

I delivered specific and clear answers to these questions. But when praised by the facilitators, I minimized my success by stating to everyone that I would surely fail later in the day. I wasn’t the only one in the room who struggled. Every other woman and one man of color who was participating that day, all of whom were highly accomplished in their fields, fumbled.

Many of us have trouble claiming our “expertise” in any one area, let alone claiming our voice, our space, or our rights. But do you know who doesn’t? It shouldn’t surprise you. Most of the “expert” voices we hear in the media are from an extremely narrow group—mostly western, white, privileged, Christian, and overwhelmingly male.

This certainly happens in the fields of international development and global health as well.

An estimated 25,000 participants from more than 185 countries will assemble in my city of Washington D.C. next week for the XIX International AIDS Conference. I wonder of those 25,000 experts, how many have actual “on-the-ground” expertise?

What is undeniable to me during my decade of service in the HIV sector in Africa is that most families are getting by not because of sweeping national-level policy protections or major internationally-funded programs. Rather, those who survive and thrive do so because of the local efforts of people who organize their communities to extend support and services to children not sufficiently reached by government or international agencies.

A study for the Joint Learning Initiative on Children in AIDS at Harvard in 2007 revealed that the prevalence of community-level initiatives for children affected by HIV/AIDS in Uganda was one per 1,300 people. In another example, a UNICEF-sponsored mapping exercise identified over 1,800 of these groups in Malawi (Network of Organizations serving Vulnerable and Orphaned Children of Malawi, 2005).

Clearly these are folks whose knowledge, expertise, and local efforts are invaluable to the multi-billion dollar (though shrinking) fight against HIV and AIDS.

Robert Chambers of the Institute of Development Studies talks about the strong centripetal forces that draw resources and educated people into the ‘core’ where there is mutual attraction and reinforcement of power, prestige, resources, professionals, and the training to generate and disseminate information.

What happens to the periphery then, when it’s those vulnerable children in the periphery that we are trying to serve? When a privileged few frame the conversation about fighting AIDS or reducing poverty or addressing climate change, remedies from above are imposed on the excluded. Yet it’s those on the ground who have the most important knowledge, ideas, and resources to deal with the immense and complex problems associated with vulnerable children in Africa.

REPSSI (the Regional Psychosocial Support Initiative) is a pan-African-initiated and -led non-governmental organization based in Johannesburg, South Africa, that has reached “front-line” service providers—community volunteers, teachers, police officers, social workers, traditional leaders, and others—for the past decade. REPSSI’s innovative distance-learning course in community-based work with children and youth is the first accredited course of its kind in Africa. Graduates now number 494 and there are currently over 1000 enrollees in the course.

This year REPSSI conducted phone interviews with 309 of its graduates from the first certificate cycle in 2009 (64%) and found that REPSSI is reaching the “right kinds of people” with this course—those who work directly with children, which they estimated at approximately 130 children per graduate. Most importantly perhaps, REPSSI found that 18 months after graduation, 70% of REPSSI’s graduates remained in their communities. This indicates the strength of a situated, supported distance learning program. More than two-thirds of graduates were leading psychosocial support initiatives in their agencies and organizations throughout southern and east Africa.

Certainly the International AIDS Conference organizers have made great strides in recent years to include more participants from marginalized communities and developing nations. However, even though grassroots leaders are a crucial part of the “last mile,” they continue to be under-represented at the table and under-valued, less understood, and thus overlooked in funding flows, capacity building opportunities, and influence.

This year’s conference theme is “turning the tide together.” Thus we have to ask—what is the cost to all of us when so many of the best minds and perspectives from the community-level are left out?

Here is where we clearly need all the help we can get—on-the-ground experts welcome.

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