Activism 101: The Lowdown on Being a Hero for Zero

jim kane

By Kate Black

If you want to talk about getting more involved with HIV and AIDS activism, Jim Kane is your guy. A 28-year survivor of HIV, he has been an active member of the community for much of the movement in Canada. He was once a member of the HIV Edmonton team and Positive Speaker’s Bureau, and currently sits as the Vice Chair of the Canadian AIDS Society while residing in Winnipeg.

 

How do you define activism?

If you’re an activist, you’re also a communicator. Communication is a two-way street, by the way. It involves active listening and then speaking on behalf of people if you’re representing them at a regional or national level. So it’s important that if you’re going to consider a role in activism that you have good listening skills too.

 

What was the climate of stigma like when you were first diagnosed?

There was this huge knowledge vacuum. A lot of the opinions that were driving society as a whole were based on ignorance and fear and misunderstanding. Here in Winnipeg, there was this big misconception that HIV could be transmitted by mosquitos. There were people who wanted to quarantine a whole segment of society that was at risk for or had HIV, even though there was no science to back [that] up.

 

How have you seen the perception of HIV and AIDS change over the years?

It’s changed quite a bit because now the medication is a lot better with much more positive health outcomes, so HIV is becoming much more manageable. The disease has changed. In the early days, it was a disease that largely impacted one community, and now over the last 15 to 20 years, we’ve seen that HIV is an equal-opportunity infector and there’s people from all walks of life living with HIV. Some of them have unique needs and sometimes the challenges now in many organizations is making sure the voices of a wide variety of people are heard.

 

What are the current challenges for HIV and AIDS activists?

The big thing today is that HIV is an equal opportunity infector. The virus does not discriminate, but people do. That is our challenge.

With the criminalization of nondisclosure, a lot of people have very strong views based on old science, and there’s quite a challenge with that. In my opinion, that has created a lot more stigma than we needed to have. It is putting people in a position where they fear getting tested and they fear prosecution because they’re uncertain about the law. [Another challenge is that] a lot of people living with HIV are dealing with much more complex mental health issues today than they were before. When someone dies from this disease that worked you’ve with, cared for, or supported, there’s always survivor guilt. There’s always a segment in society that has some deep, deep memories of situations that have happened. They suppress that and they never see the light of day or they hide it with alcohol or drug abuse or gambling, just trying to postpone dealing with your feelings.

 

Do you have any advice on how people living with HIV can step into activism?

If you are HIV-positive and you’re willing to speak out, even if it’s just telling three or four of your friends, it makes a difference. It’s those personal relationships where you communicate.

 

How about allies?

The best way to show respect is to listen to the stories. So if you have the opportunity, go to an event where there’s speakers and listen to that shared experience. Maybe challenge people who speak out in a tone that you don’t feel is appropriate and to have a dialogue in a respectful way. If you’re a staff person, one of the things you can do is make sure your workplace is very welcoming and stigma-free and encourages people living with HIV to be involved in decision making so they feel wanted and not ignored. If each of us does our part, we can certainly make a big difference.

 


 

If you’re interested in getting involved locally, the Scotiabank AIDS Walk for Life is our biggest annual fundraiser and it’s coming up on September 20, 2014. If you’d like more information please visit click here to learn more! Additionally, the Canadian AIDS Society has great opportunities for both people living with HIV and AIDS and those affected by HIV and AIDS. Please contact us at 780-488-5742 for information on how to get involved. 

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