September 28, 2013
Occasionally, we here at TheBody.com are lucky enough to hear from readers who volunteer to craft their own articles sharing their stories and thoughts. This is one of those articles.
Several years ago, when my oldest was in the 5th grade, I previewed the HIV/AIDS video that our local public school uses to fulfill state educational mandates. The video was produced in the 1980s (might have had an update in the early '90s), was incredibly fear based, and contained very outdated information about the virus.
I was stunned. In most other ways, I've been very impressed with the curriculum our school district utilizes. The video featured newspaper headlines that read "Thousands Die of AIDS" and even spliced in a shot of the grim reaper at one point. To illustrate how HIV attacks the immune system, the video used abstract concepts related to baseball that even I, as an adult, was confused by. Then there was the personification of HIV as a red monster.
My 8-year-old son, Duzi, is HIV positive.
He is not scary and he is not contagious. He takes a regimen of antiretroviral medication every day and has an undetectable viral load. He is not a threat to anyone.
The information in the video was scary. Those without additional information would be afraid of my son after watching it. Afraid of my son -- a "normal" (whatever that means!) kiddo who plays soccer, basketball, and baseball; does karate; and is a talented hip-hop dancer. Afraid of my son who is a human being who defies stereotype. He is a survivor and simultaneously a student who loves and reads the Magic Treehouse series. Just like your kids.
The video I previewed perpetuated stigma, the terrible stigma that still criminalizes HIV-positive individuals, even when they adhere to their medication and have an undetectable viral load. The chances of transmission are seriously almost moot (if you consider one in a million via sexual intercourse moot, even less if blood outside of the body is involved -- I TOTALLY do) when HIV viral loads get to undetectable -- meaning HIV can't be detected in the blood.
When the video ended, my head was spinning, blood rushed to my face, and my hand shot up. Why, I demanded, was this video being shown at all? Wasn't there something else produced in this century that we could show instead? The poor teacher showing the video was simply utilizing a resource that had been approved by our district, and by our state. I then complained to the principal and to the school nurse, who put me in contact with the Health Coordinator at the school district.
The Health Coordinator was incredibly kind and helpful. She admitted that the video was outdated and, together, we searched for replacement videos -- for an entire year. We found nothing appropriate for the public school setting. And I really mean nothing.
So, I decided to make some new videos. With the collaboration of the Office of Superintendent of Public Instruction in Washington State, physicians from Seattle Children's Hospital, and fundraising help from Seattle Children's Hospital Foundation, I'm creating a series of four brand new video resources for 5th grade, 6th grade, middle school and high school students.
These videos will be available FREE OF CHARGE to any school district in the nation that wants them.
Utilizing a documentary format that features a "day in the life" of an HIV-positive person, the videos will contain medically and scientifically accurate information and will focus on reducing the devastating social stigma still associated with the disease. Students will understand the truth about prevention and transmission, and will feel compassionate, not fearful.
Of course, given the nature of education budgets in states across our nation, there is not any funding available for these videos. We need to raise $150,000 to create all four videos. We've launched a fundraising campaign on Indiegogo to help us create the first video.
Before you go to Indiegogo, I need you to know how much thought, discussion and prayer went into my family's decision to disclose Duzi's status so openly. Up until now, we have only disclosed his positive status on an individual basis. We have never believed that HIV is something to be ashamed of. We have never communicated to Duzi that he has something to hide or be embarrassed of. Never. We have so normalized HIV in our home, that we actually rarely discuss it anymore. Every morning, Duzi takes his HIV meds, I take my thyroid meds, Caleb takes his acid reflux meds, and Alex takes her iron supplement. It's no big deal.
We started to realize sometime in the middle of the last school year that more people knew about Duzi's HIV status than we thought. Unfortunately, even though HIV status is protected under federal privacy laws, moms at the bus stop, parents at athletic events and well-meaning people in our church like to chat about "secret" things. We realized that we were not in charge of the information people were communicating to one another about our son's health. People who knew about Duzi's status didn't know that we knew that they knew and so were not coming to us directly to ask questions. We had no idea what myths were being perpetuated.
We've decided, with Duzi's input, with my other kids' input, with perspective from our community of positive families and with counsel from friends who know us well, to disclose openly.
Secrets have much more power than truth. We desperately want Duzi to live free of the burden of secrecy and shame; I have no doubt that open disclosure will have some consequences. I have no doubt that we will encounter ignorance and prejudice. But, at least we will know about it.
And, I'm prepared to fight for my son's right to live in the light.