Feb02
What’s in a name?
A lot - when it’s attached to an AIDS Service Organization. But is “AIDS” Service organization a misnomer in 2012? How many people with “AIDS” do they serve. And does that “AIDS” name drive potential clients away? Here’s one agency that says yes.
If you are an organization with AIDS in its name, there are probably a few reasons NOT to change one’s name, No matter if that name relates to a disease scarcely anybody has in North America, or that name scares people away from the services that are offered by that “AIDS” service organization. Life is complicated and so is delivering HIV-erlated services. Sometimes living with an anachronism is more attractive than responding to the changing times.
But it’s becoming increasingly hard to rationalize why we cling to the name “AIDS” over the door and exclude, in name anyway, all those people living with HIV who make up the vast majority of every organization’s client base. It’s hard to rationalize when that "AIDS" name does not even reflect what our causes are all about - HIV criminalization, HIV stigma, HIV treatment and the like. It’s hard to rationalize when that name keeps newly infected from stepping through the door, keeps people from walking in to get tested.
I am living proof. When I was diagnosed with HIV in 1993 I wanted nothing to do with an “AIDS” organization and even if I did, I would be too scared to be seen walking in to that building.
Guelph's Megan DePutter did a good job writing about this issue in PositiveLite.com last year and essentially came to the conclusion that AIDS-named organizations are an anachronism. So did the former BC Persons with AIDS Society which changed its name to Positive Living BC. The AIDS Committee of London changed too, so did AIDS Network of Edmonton, progressive agencies all.
Megan DePutter put the case for name changes quite succinctly. “There is so much stigma associated with the word “AIDS” that many individuals choose not to associate themselves with anything or anyone related to it. We know that many people avoid walking in the door of an AIDS Service Organization for fear of what other people think. By changing the names, ASOs are probably hoping to become more accessible and also helping to decrease some of the stigma in general around HIV. The other good reason is that by referring to HIV and not AIDS, the organizations provide a better representation of the realities of people who access the services. “
Personally I think ASOs need to adapt to the times. We have transitioned from a place where we needed to consider a name change to one where it has become universally and urgently needed.
Nevertheless there seems to be no recent rush, although an agency in the US announced a change just this past week. Given that the announcement by Rowan County AIDS Task Force, now Rowan Care Alliance, captures the issues quite well, I’m reprinting a condensed version of the news story below..
Rowan County AIDS Task Force changes name
(From the Salisbury Post, North Carolina.)
The Rowan County AIDS Task Force has changed its name, but not its mission. The nonprofit, volunteer organization continues to provide services that improve the lives of individuals and families infected and affected by HIV/AIDS. It also works to prevent the spread of HIV and AIDS through education and testing. As of Jan. 1, the group is now Rowan Care Alliance.
The group decided to remove AIDS from its name because of the stigma that continues to be attached to people with HIV and AIDS. “HIV stigma is a huge deterrent to testing, education, prevention and outreach,” said Stacey Cuevas, case manager supervisor of HIV Case Management at Rowan Regional Medical Center and a Rowan Care Alliance board member. “Many people, including medical professionals believe that all people with HIV or AIDS are drug users or lead a risky lifestyle.”
The majority of case managed clients - 65 percent - are African Americans. Twenty-six percent are Caucasian, seven percent Latino, one percent Asian and one percent Native American. HIV and AIDS stigma is particularly acute in the Latino and African American communities. Shame and the fear of disapproval, rejection and exclusion keep many Latinos and African Americans from getting tested for HIV or from seeking services.
Lawrence Jones, a client of HIV Case Management, thinks that many people who are HIV positive stay away from getting help because “in Salisbury, everybody knows everybody. They are too embarrassed to come forward; the information is too personal.” Jones, who was diagnosed in 2001, finds that people are generally curious about HIV/AIDS and want to know more about it. “I use it to educate others about the disease. It is not a death sentence.”
“If one person gets tested for HIV because our new name is welcoming and non-threatening, we have succeeded,” said Dr. Gordon Senter, president of Rowan Care Alliance.
- Tags: AIDS, AIDS service organizations, eliminating the word AIDS, HIV, HIV+ HIV-positive, January 2012, PositiveLite_com, Rowan Care Alliance
About the Author
Bob Leahy - Contributing Editor
Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com 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 HIVStigma.com campaign, along with PositiveLite.com publisher Brian Finch. He joined PositiveLite.Com 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).
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 years and three dogs.
Comments (2)
Ken Monteith
On the other hand, AIDS just doesn't mean what it used to. It has even lost its significance in that this is not a one-way trip anymore (primo infection, latency, symptomatic, AIDS, death), due to the efficacy of treatments. I actually also get annoyed when I hear people who are explaining HIV to uninformed audiences refer to the AIDS stage (I must just be getting generally cranky in my old age!). So, as a thing of the past, shouldn't the term disappear?
I think this really depends on what the organization is doing. My agency, COCQ-SIDA (SIDA = AIDS) made the decision to keep this name, as it serves us in our mission to inform the public and to work on the issue of stigma and discrimination (how do you do that while participating in it by shunning the more stigmatized term?). This has the advantage of relieving us of the added task of explaining HIV, which — believe it or not — it less understood by the general public than is the term AIDS.
When it comes to services to people living with HIV, however, the decision can be different. Our "VIH info droits" (HIV rights info) targets individuals who have experienced discrimination because of their status. But they already know what HIV is and don't need that first step of education to catch their attention.
So I remain torn. I cling to my distinction as a person who has been diagnosed with AIDS, but I also recognize that, fourteen years later, it just doesn't mean anything anymore.
Bob Leahy