A Boy, a Virus, and the Education of a Community
January 15th, 2014

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By Shawn Decker

In the 1980s a deadly untreatable illness called HIV was making the headlines across the nation.  Much was not known about the disease at the time.  It carried with it the stigma and fear that comes naturally when people and their community are faced with an unknown disease.  The experience of Shawn Decker helped the Waynesboro community come to understand one of the biggest health issues gripping the country in the 1980s.

 

Despite being born with the bleeding disorder, hemophilia, I enjoyed a pretty typical childhood growing up in Waynesboro. I lived in a quaint neighborhood, just a few skips down the sidewalk from my best friends. Summers were spent swimming at my grandparents’ pool and many hours were dedicated to the latest Atari games when I wasn’t outside pretending to be Rambo in a game of war.

Yes, I am a child of the 1980s.

And one of the most impactful events of that decade was the emergence of HIV/AIDS.  It was during a time when there were gaping lapses in blood safety standards.  Due to my reliance on blood products for treating my hemophilia I was at risk for HIV infection.  There were signs that my immune system was compromised in the 4th grade when half of my body broke out in shingles. I did not receive a standard HIV test until two years later in 1987. It was the spring of my 6th grade school year and, aside from a bout with strep throat, it was one of my best years until I failed that “pop quiz.”

After I tested positive for HIV my mom informed my teacher of the results. My teacher had concerns about the risk of transmission to my classmates, and when she spoke with her doctor it started a chain reaction of fearful reactions that led to me being kicked out of school. I wasn’t allowed back in class for the last four weeks of the school year.

That summer my parents, doctors, favorite nurse and even my Kindergarten teacher all worked tirelessly to educate concerned community members connected to the school board. I remember being asked by my mother if I wanted to go public and educate people about HIV. I’d just turned 12, and all I wanted was to be a normal kid. So I declined. Things were moving along at a very slow rate with the school system, and it wasn’t until a lawyer from Richmond agreed to take up our plight that the doors of compassion began to open up.

Just in time for the start of junior high school, I was allowed to once again attend public school in Waynesboro.

The hardest part about being diagnosed with HIV at a time when there weren’t any treatments available wasn’t the concerns about how much longer I had to live. It was the social ramifications of the medical condition. Some of my closest friends, whom I’d known for most of my life, weren’t allowed to come over to my house to play anymore. When I landed a girlfriend in the 8th grade, someone told her the “rumor” that I had AIDS. I did my best to keep my HIV status quiet, and never talked about it with friends. My plan on how to deal with HIV was that I’d deal with it when the end came- I didn’t want to dwell on it a moment before, and did my best to not let the fears that others had bleed into my psyche.

In 1996 at age 20 I decided to open up and posted one of the first HIV/AIDS websites on the internet. I started writing for an HIV/AIDS magazine called Poz. My new-found openness eventually led me to my incredible partner, Gwenn, and together we educate about how we maintain a healthy relationship. In 2007, twenty years after I was kicked out of school, I was invited to be the commencement speaker for the graduating class at Waynesboro High School. After I spoke, a former official from my junior high school approached me with tears in his eyes- he said that he just didn’t know about HIV back then and was very sorry for how things were handled. I actually consoled him, and was happy to do so.

In hindsight, those experiences as a child testing positive for HIV and all the drama that came with it made me a more compassionate person. And a better educator. I don’t hold any anger about what happened after I tested positive for HIV- there was a lot of fear and misunderstanding about HIV in 1980s. I know that my misfortune in getting HIV educated a lot of people long before I decided to speak out about HIV.

(Shawn Decker currently lives in Charlottesville, VA, with his wife, Gwenn. In 2006, his humorous memoir My Pet Virus was published by The Penguin Group.  Shawn and his wife Gwenn have been featured in  Cosmopolitan, Entertainment Weekly, Grazia and Now magazines (UK), The Chicago Tribune, The San Francisco Chronicle, USA Today as well as on CNN.com, VH1, MTV, BBC and HBO films.  He is currently working on a screenplay based on his experiences with HIV as a child. And, yes, he still plays a ton of video games.)

For more information about Shawn, you can find him at www.shawnandgwenn.com and on Youtube at www.youtube.com/shawnandgwenn.  His book, “My Pet Virus: The True Story of a Rebel Without a Cure” can be purchased on Amazon.com at www.amazon.com/My-Pet-Virus-Story-Without/dp/1585425257/

 

 

 

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