[dropcap]T[/dropcap]hough relatively new to HIV/AIDS activism and advocacy, writer and blogger Connie Rose Shearer has wasted no time in getting the word out on social media and beyond. Committed to providing forums for everyone who wants to discuss HIV, and other infections, she recently founded a blog site called LivingPos.com to help empower and educate others. As treatment is never a straightforward path and daily lives have their ups and downs, she plans to feature not only the successes but also the struggles. She also seeks to counter the stigma foisted upon individuals living with one or more infections.
Shearer is adept at all things Internet, as her professional work involves writing blogs for various ticketing sites as well as videogame walk-throughs. Living in Las Vegas, the advocate has a daugher and grandson. A&U caught up with her to discuss her new website as well as the power of social media.
A&U: Why did you start your blog and why did you decide to include voices other than your own?
Connie Rose Shearer: Why did I start my blog? That’s a great story. I started it because I found out that my voice could save someone’s life.
I started blogging on my own because I was banned from blogging on Positive Singles dating site for defending a friend who is HIV-positive from ridicule, and I lost my forum to discuss HIV. I had spent so long in the HIV closet and blogging six years on Positive Singles lit a fire inside me.
A woman found me via Facebook and told me that reading my stories of happy, successful living with HIV on Positive Singles kept her from committing suicide after she was diagnosed with HIV. She currently lives in Africa, so she faces real stigma, real discrimination and many give up quickly. My stories prompted her to start medication, begin counseling, and want to live again. We are still friends today. She is why I started my blog.
Why did I open the new site up to other bloggers? Because I am only one story and what if someone needs help about something else? What about the people who have a story to tell but are not sure how to create a blog or what to do? I opened my site up for those people because we are HEQUALS [an amalgam of the Hs she discusses below and “equal”].
The site is dedicated to all four incurable Hs, HIV, HSV [herpessimplex virus], HPV, HCV. (I mention HCV because not all genotypes are curable and some do not benefit from the currently available hep C cures.) Many people deal with co-infection or only one infection, and they need to understand their H, find ways to live with their H, successful ways to disclose, and so on. I thought of this while blogging on Positive Singles also, since that site is dedicated to all four Hs. I learned so much about HSV and HCV on that site that I knew that if I was going to have a website I had to offer all that information to everyone else.
Is there a limit to social media when doing AIDS advocacy?
Yes, reaching negative people. Many people using social media as advocates are advocating for people who are secretly living with HIV/AIDS and they cannot discuss, share, anything that has to do with HIV on their friend’s walls. So, social media has strict limits for an advocate.
You featured Andrew Pulsipher, a man living with HIV whose photo featuring his HIV-negative wife and children went viral last year. Since then, he has launched a “viral wave” to unite other advocate voices on the Internet. Why did you think it was important to provide a platform for his story? Why were you excited about his “viral wave” idea?
It was important for me to share his story because I need people to understand that there is no risky behavior needed at all to get HIV. If you’re human, you are at risk.
My daughter Sami, who just turned twenty-one, was exposed to HIV during the C-section and when I breastfed and by the grace of God she is still HIV-negative. But she dealt with horrible stigma and ridicule growing up because people in our small community knew about my disease and she stood by my side and was my protector, my little shero her whole life.
So I feel Andrew deserves my help because I could have been his mom; it’s my job. I chose to marry the man who infected me without asking for an HIV test, and I accept full responsibility for my actions; I am excited about this campaign because seeing these young people—like Andrew and Derek, or like Ieshia and Marissa, Erica and a few others I have met—be so brave in the face of unimaginable adversity [inspires me] and I do this because they deserve my support and encouragement. I am excited because they are alive to be here to do this with us, while so many others, like Ryan White, are not.
I have never had a problem with my HIV; many others have, though. So I come along and keep an eye out for trouble because these are my people—this is my family. My family members, other than my parents, want nothing to do with me now that I speak about and try to bring awareness to HIV.