Reem Wasay speaks to Damien Rule-Neal, a member of the Positive Speakers’ Bureau, a unique initiative that empowers people living with HIV to eliminate the many stigmas that still exist by the simple power of telling their stories.
Living with dignity and pride, making an impact by telling personal stories and changing the draconian attitudes that continue to nurture stigma, Auckland-based initiative the Positive Speakers’ Bureau (PSB) has been committed, for the past 20 years, to giving a human face to three letters: HIV. Equipping people living with HIV (PLHIV) with the tools needed to challenge HIV-related stigma via professional public speaking training, the PSB has been a source of understanding and education for the masses. A volley of organisations, universities, schools and medical bodies routinely book with the PSB to have speakers – who are all PLHIV – come to their events to share their lived experiences of HIV, their own biographies of experience.
One such speaker is Damien Rule Neal, a man who may seem shy and unassuming but who has a profound story to tell, an account of honesty, perseverance and challenging the status quo of HIV related stigma, which still lingers to this day. “I found out I was HIV positive in December 1999 just after I had left Christchurch for Auckland to start a new job. I had been sick with the atypical seroconversion – a GP told me it was just a very bad flu. When I actually went for a HIV test and received the positive result, I was devastated. I totally shut down. I felt like a black curtain had been pulled in front of my face and all I could see was darkness with no end.” Reeling from this discovery, Damien’s first instinct was to protect his partner, pocketing the weight of his diagnosis within himself, “I pushed him away at the time. He had been so wonderful looking after me. I did what I thought I could do to protect him and pushed him away. He is HIV negative; he was the second man I had slept with.”
Such is the isolation many PLHIV tend to turn towards, embracing it to protect those they love, “I couldn’t let HIV do that to me, defeat me when I had so much to live for. Going public was part of how I learned to deal with HIV and have it be a part of my life. I joined the PSB, received professional training on how to speak publicly about my status and how to use my story for change. The PSB played a major role in my life, giving me the skills to talk openly.”
Damien started volunteering at Body Positive as well. He trained and became a tester at the Burnett Centre, went back to university and did his social work degree, and joined the New Zealand AIDS Foundation on the Positive Men’s Health Team, “I felt that having a presence, giving a face to HIV would help remove some stigma surrounding HIV. I went on TV and did some media projects. This taught me that there was still a lot of fear around HIV. A lot has changed since I became HIV positive, but so much has not.”
“Stigma is still very real, especially within the gay community. It is why HIV is still partly around, as no one talks openly about it, but places blame on the person living with it. They don’t know how you got it, but they make assumptions. It is hurtful, it affects your life in so many ways, you keep yourself guarded and cut off from so many people. A lot of people living with HIV hide away, ashamed to be in the light, living. The PSB has been instrumental in helping myself and others smash those stigmas by recounting our journeys and empowering not just ourselves but our audiences too. Knowing my status and having an undetectable viral load has empowered me. I control my health; I don’t let my health control me, nor my life or sex life.”
Having worked in healthcare for close to 20 years now, Damien is currently training to be a nurse, putting his learning and skills towards a compassionate and meaningful service. During his free time “if any” he spends moments of comfort and rest with his husband, his dogs and, more recently, a beautiful little granddaughter.
The PSB is managed by Positive Women Inc, an NGO that supports women and families living with HIV in New Zealand.