Changing names

I mentioned in my last post that I had to spell out the difference between HIV & AIDS to a dude I met at a bar. What I didn’t mention was that after explaining the difference, he challenged me yet again, saying, ‘It’s kind of misleading, isn’t it? With a name like, the AIDS Committee?”

ASOs are starting to change their names. BC Persons with AIDS Society has recently become Positive Living Society BC.  The AIDS Committee of London is now Regional HIV/ AIDS Connection  and Youth Community Outreach AIDS Society will also soon be choosing a name that excludes the word “AIDS.”

Some organizations are way ahead of the game. In 1999, the AIDS Network of Edmonton became HIV Edmonton.

In many ways, I think the change of names will be good for our communities. For example, 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. In the BC press release they stated:

“By choosing to remove ‘AIDS’ from our public identity, Society members have sent a strong message about the role HIV-positive individuals intend to play in BC’s cultural landscape. Old labels no longer apply, and no longer will they set us apart from any other British Columbian. ’Positive Living’ defines us by the active, healthy approach we now take to life with our disease.”

In an interview with Xtra,  Ian Nelson, reception services coordinator at the organization said:

"Twenty-five years ago, 'AIDS' was very fitting to have in our name, and we were persons living with AIDS," Nelson says. "HIV and AIDS is such a continuum these days that with the new medication now, many people probably will not experience AIDS. And so, in that context, somebody that's newly diagnosed with HIV really would probably wonder why they want to join an AIDS organization. That would almost be giving up the fight."

So changing names is partly about recognizing and honouring people living with HIV, and recognizing their contributions.

In addition, ASOs endeavour, and struggle endlessly with, getting the public to understand our message. It’s honestly quite difficult when people only want to talk about AIDS. No matter how many times we give interviews to the media they always cite “AIDS” in place of HIV. And although it burns me up, it’s hard to criticize them too much when we’re being cited as the “AIDS Committee.” It does make it more difficult to talk about HIV when we start off the conversation talking about AIDS.

In a nutshell, our roles and responsibilities have changed, and it makes sense that the names of our organizations do too.

The risks? Well, one of the risks is that we depoliticize this movement and justify the view that HIV can considered a chronic manageable disease that is akin to, say, Diabetes. HIV is not Diabetes. HIV is not just about physiological health or even just the social determinants of health. When we talk about HIV we also talk about sex and drugs, and that means we can’t talk about HIV without also talking about homophobia, racism, hate, sexism, stigma, oppression and marginalization, and on the flip side, activism, unity and human rights.

In the BC statement they said:

“Thanks to radical advancements made in HIV treatment over the past decade, most long-term survivors and newly diagnosed individuals in BC can now live with HIV as a chronic inflammatory illness rather than a precursor to a terminal one. Our members’ decision to align our Society’s name with the spirit of this lifestyle marks a new era of hope, promise and longevity for BC’s HIV-positive community.”

It’s true, and this is all good. But I do fear that the wider communities and funding bodies will interpret this message as saying something different. The problem of looking at HIV as a “chronic, inflammatory disease” is risky. Very risky. We of course want to de-stigmatize the virus, encourage people living with HIV to live full, healthy and long lives, and encourage others to know that this is possible. But we don’t want people in our community to forget that:

-          HIV is a life-threatening disease and that without medication, HIV usually will lead to AIDS and death.

-          HIV often affects marginalized or stigmatized communities whose health care needs are often pushed to the margins and who may have trouble accessing health care due to stigma (such as people who inject drugs and/or are gay, transgender, Aboriginal, homeless, etc)

-          Both the acquisition and treatment of HIV is not simple and is complicated by a host of issues

-          Not everyone has access to a good care team and treatment

Honestly, if I have to lean in one direction I would have to lean in favour of changing the name. I think that it’s better to have a name that accurately reflects the situations and realities of the people we’re serving today, not yesterday. And I hope that this might provide a gateway to having the general public decrease the amount of fear associated with HIV. What I also believe though, is that ASOs will have to fight even harder to make it known that HIV is not a simple disease to manage, that it is ever complicated by stigma, oppression and discrimination. An ongoing challenge will be to fight the myth that Canadians no longer need to worry about AIDS.