The “village elders” of the HIV community: what’s their role?

Published 06, Feb, 2018
Author // Bob Leahy - Publisher

Getting old when living with HIV doesn’t always mean early retirement – or even retirement at all - if you can juggle self-care, health and giving back to the community. Bob Leahy reports.

The “village elders” of the HIV community: what’s their role?

What are village elders?

In many cultures, the concept of village leaders is well known. Unless one comes from an indigenous community it is a path less well travelled in the HIV community.

That’s surprising. Collectively, we have seen a lot of energy devoted to the subject of HIV and aging. Much of that discourse though centres around the impact of HIV and /or HIV treatment and/or the toll of advancing years on our bodies. The dialogue has been less fulsome about the concerns of the elderly, as opposed to those over 55. It’s even less fulsome about how the elderly fit in to the HIV community other that in their role as recipients of care. That pigeon-holing doesn’t really work for me.

I may not be alone.

I was at a recent meeting discussing how to end the epidemic, a concept which has so far failed our governments here in Canada. The handful of participants included a majority of 70-somethings. That is somewhat rare, but provided energy for discussing the role of our village elders and, although usually few in number, what we bring to the table.

I’d rather that kind of discussion happen amongst those younger than us but you take what you can get.

Back home, the concept of village elders having real value in our community still resonated. It’s somewhat of a nebulous subject, though, isn’t it? Who or what are village elders, I asked myself – so I turned to the internet.

The term “elder” I learned from Wikipedia, is used in several different countries and organizations to indicate a position of authority. This usage is usually derived from the notion that the oldest members of any given group are the wisest, and are thus the most qualified to rule, provide counsel or serve the said group in some other capacity.

Wisest? Most qualified to rule?

The term seems to reek of entitlement. I’m thinking. Leadership roles should be earned in other ways besides the march of advancing years. Yet it’s hard not to argue that advancing years can bring a wider perspective, born of experience that has potentially very real value. True, advancing age may also bring on crankiness – I’ve often written about my own. Age also brings the prospect of health challenges, accessibility issues or even a narrowing of one’s world view. But given the right convergence of circumstances, advancing age can seem like a gift to the person living with HIV and to the wider community.

We seldom have a chance to find out. Advocates over the age of, say, seventy are a bit of a rarity. Self-care and health issues – tell me about it -tend to take over as we get older, so we see a thinning out of those active in the community in the upper age group. But what about those who remain?  What’s their role? Surely not just care-recipients?

There are, it’s true, multiple roles which draw on what they carry in their heads and their hearts, their history, sometimes, of living through the early days of the epidemic is valuable. But so is the contribution of others diagnosed later in life who have nevertheless thrived.

Respect: should it be automatic or earned?

Self-worth and what our village elders bring to the community table is, I think, often tied in with the subject of respect.

I think increasingly I find myself feeling like I deserve it. It’s the entitlement thing again, I know. It’s likely very challengeable.

But I’m an open book. In researching this article, I turned to something I had written about The Graying of AIDS project and my involvement in it. The article is here. In an interview that took place in Durban which formed part of that story I said this: “There’s a sort of long-term survivor activism now, and some people are saying, “Hey, wait a minute.” We started the community-based response. There’s issues of, of… of respect, I guess? You know, we don’t ask for respect, but we feel we should probably get it. Yeah. And we notice if we’re getting respect. We notice if we’re getting acknowledged.”

When we speak from the gut, it sometimes reveals the truth.  And yes, I likely crave respect. There, I said it. Feelings are important though; they should carry no shame.

If a bunch of people  craving respect is a problem, though, it’s a growing problem. The HIV population is growing fast in numbers. This trend will culminate in the next few years with over half of all people with HIV in North America, Europe and Australia being over the age of 50. My interest here is in those much older than 50, but I’m thwarted. Canada has no data which categorizes those living with HIV over 55, by age. We don’t know how many 60-year olds, or 70 year olds, or 80-years old we have. That speaks volumes to the level of official interest from funders. Simply put, we aren’t worth tracking said the epidemiologists early on at the Public Health Alliance of Canada (PHAC) who fund, ineptly as it happens, the community-based response to HIV in Canada.

That official ignoring of us is, of course, a disgrace. Respect, whether we are looking for it or not, is in short supply in Ottawa.

I could say more, but it will inevitably sound (even more) self-serving. It’s awkward of me to promote the value of our village elders to the HIV community because I likely fit that definition myself.  So I won’t. My hope though is that the concept enters into every one of the myriad of discussions about the value of those who have aged with HIV well past retirement age.

Bottom line? Old people living with HIV matter, whatever life choices they make.

About the Author

Bob Leahy - Publisher

Bob Leahy - Publisher

Award-winning blogger Bob Leahy first made his social media mark a decade ago on where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s campaign, along with founder Brian Finch. He joined at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.