The Positive Side

Spring/Summer 2009 

Speaking from the Heart

Talking publicly about your HIV status can be a scary yet rewarding experience. Jessica Yee interviews four courageous PHAs who speak out and discovers how saying “I have HIV” can open hearts and change lives.


“Stories are the creative conversion of life itself into a more powerful, clearer, more meaningful experience. They are the currency of human contact.”
— Robert McKee, Hollywood screenwriting teacher

PERHAPS, LIKE ME, you have had the honour of listening to someone speak so compellingly that you swear your life changed as a result of hearing them talk. Was it the words they used, or perhaps the tone? The space in-between their lips, where brilliance seemed to find its way out? The art of storytelling is an age-old method of sharing life stories and imparting wisdom. Sometimes the result is simply a good laugh, other times it is much more powerful.

One of the best ways to fight ignorance, fear and stigma associated with a disease is to put a face to it — and HIV is no different. Many AIDS service organizations (ASOs) have programs in which people living with HIV/AIDS (PHAs) speak publicly to promote awareness of HIV and AIDS. They’re often known as speakers’ bureaus, although I prefer to call them “the power of the human word” because I am not a fan of structuring what has been organic in many communities and nations since time immemorial.

The people who talk publicly about their lives with HIV — most are volunteers — often speak of the desire to educate, inform and touch someone else’s life and make it better. As a young person who is starting out in sexual health and AIDS services, I have learned a lot just from listening to people speak. That’s also to say that I’ve been challenged, frustrated and didn’t always like what they had to say or even had the patience to sit through it. The “speaks” that really stick out in my mind either made me feel represented or challenged me to critically examine my own perspective. Those were the times when I had the opportunity to grow and change.

Speakers, too, often benefit from their role. Some are compelled by the urge to help people. Others feel a need to give back to a community that has been a support through difficult times. Many claim that there are healing powers in the sharing of the ups and downs of their journeys.

To pay tribute to the power of storytelling embodied in the speakers’ bureaus across the country, I spoke with four PHAs about their experiences as public speakers. (Choosing only four people from across Canada was a difficult task; there are so many speakers with riveting stories.) They spoke to me about their motivation, their satisfaction and their tricks for engaging an audience. In listening to each, I learned that it takes guts to be public about your HIV status. All four people reveal that the key to being an amazing public speaker is “speaking from the heart.”

Doris Peltier, 52

Wikwemikong Unceded First Nation,
Manitoulin Island, Ontario
Diagnosed with HIV in 2002
Speaks with Canadian Aboriginal AIDS Network

What gets you fired up?

First of all, I am a woman who was diagnosed at the AIDS stage. This is a trend we are seeing in our community, particularly with Aboriginal women. I think it really speaks to the systemic silencing of the Aboriginal voice, and the impact of this is evident in the high prevalence of HIV among Aboriginal women and youth. I feel that talking can help us to heal as a whole, as a community.

What led you to become a public speaker?

Being diagnosed with AIDS was the moment I found my voice. It was a life-changing moment. My voice came out and it came out powerfully. It was like the Spirit opened my eyes. I feel like all the things that happened to me — the journey that I walked, from the sexual abuse I experienced as a child to all that followed, including many risky activities — had to happen in order for me to get my voice, to jar me into action. This is what I talk about with women — that we need to find our voices and be able to say “no” and say it powerfully.

Where do you draw your inspiration?

In the Ojibway language we say odebwewin, which translates to “speaking from the heart.” When you speak truth, it comes from the heart.

Finish the sentence: I know I’m connecting with the audience when…

You can hear a pin drop in the room.

Advice for future public speakers:

Remember that you are not just speaking for yourself; you shouldn’t have your own personal agenda. When you step out onto that level and take that one step forward, you are speaking for other people. You are essentially opening yourself up to try to empower other people.

Jacques Gélinas, 63

Victoriaville, Quebec
Diagnosed with HIV in 1992
Speaks with BLITS (Bureau local d’intervention traitant du sida)

What inspires you?

What gives me the most enthusiasm is still being alive and in very good health after more than 16 years. I’m here to say that it’s possible to live with HIV and find a path that allows us to live in a positive way. I’m also enthusiastic about believing and realizing that human beings are certainly very complicated but can change and evolve.

True or false: Public speaking is your number one fear.

Public speaking is still a little frightening, especially since we’re talking about an infection like HIV. But the more competent I feel and the clearer my path becomes, the less I am afraid.

Finish the sentence: I know I’m connecting with the audience when…

They allow themselves to ask indiscreet questions and to laugh, or when there is an intensity as we make eye contact.

Advice for future public speakers:

You have to have a tight self-connection, above all with your path in life. And you have to be ready to listen to all kinds of questions and be able to say, “I believe your question is about my private life, and so it isn’t necessary to respond to it.”

Lulu Gurney, 25

Diagnosed with HIV in 2005
Speaks with the Playing it Safe project,
YouthCO in partnership with the National Film Board of Canada

What made you decide to start speaking publicly?

I understood that I had a story that needed to be told, and I had a strong network of people to encourage me and remind me that positive youth need a voice. There is a lack of storytelling among youth, and this is especially true with positive youth. They feel shame or guilt for contracting the virus and feel that they need to lie about it and not be upfront. I think it’s important that young people are given a chance to tell their stories without being judged.

Speaking really helped me articulate myself as a person. It gave me a new direction to go in — not only is it inspirational to other people, but it inspired me to clean up my life and make something positive of myself.

What do you get out of speaking publicly?

For me, it’s really about trying to reach out to people and letting myself be known. Even just being an example for other people who need inspiration makes a difference.

Finish the sentence: I know I’m connecting with the audience when…

I’m letting them know things that have hurt me and sometimes still do. I’m being vulnerable to people and it shows how human I am. If I manage to make friendships from a place of doubt, that’s a connection.

Advice for future public speakers:

Take a class in English composition or literature. When I first starting doing this, I was attending school to upgrade and it really helped.

James Lord Edwards, 43

Sorrel Ridge, New Brunswick
Diagnosed with HIV in 1996
Speaks with AIDS New Brunswick and AIDS Saint John

What gets you fired up?

I’m tired of tip-toeing around words I want to use. The HIV movement has become too polite. Having HIV is not polite. When I was talking with a nursing student who works with gay men, I was about to say, “When you have anal intercourse…,” but then I said, no, “When you fuck…”

What drew you to public speaking?

When I became HIV positive I didn’t do a lot of HIV work because it was too close to me, but after I returned to the East Coast I got involved with AIDS New Brunswick. I had been supported by different organizations and I wanted to give back. Recently, my reasons shifted when my friend Jocelyn, an Aboriginal activist, passed away from AIDS. I felt a rage with her passing and I needed to turn it into something positive.

True or false: Public speaking is your number one fear.

True. Even though I say I don’t care what someone thinks of me, when I see or read people’s reactions, especially if they’re judgmental, it can affect me. As strong as we may be, we all want to be liked; we don’t want to be judged.

Advice for future public speakers:

Sometimes people say things that can trigger negative memories, and next thing you know, it’s affecting you in a way you never thought it would. Investigate it. How do you control it? Do you need to put up boundaries?

Jessica Yee, founder and director of the Native Youth Sexual Health Network, works throughout North America on issues of healthy sexuality, reproductive justice, cultural competency and youth empowerment.

Photograph of Doris Peltier: Bruno Henry
Photograph of Jacques Gélinas: Pierre Dalpé
Photograph of Lulu Gurney: © 2009
Photograph of James Lord Edwards: Brian Atkinson

ASOs across the country host speakers’ bureaus. If you’re interested in participating, contact your local agency to see if they have a program or check out HIV411, a listing of ASOs across the country.