Fighting for the Right to Live in the Light

Today my heart feels burdened to share with you something that comes from a family whose courage and love have changed our lives. I am crying as I write this, because words cannot begin to express the magnitude of the gratitude I feel for this family or the urgency of the need for which they are fighting.

If it wasn’t for this family we wouldn’t be the leaders of an HIV/AIDS Local Outreach Team that partners with RoseHedge MultiFaith in Seattle to serve those suffering with HIV and the often associated challenges that can come with it (isolation, homelessness, stigma, addiction).

If it wasn’t for this family we would never have agreed to write our story for the website of Biola Queer Underground – the story that became “Just Because He Breathes,” and which went viral several times in June of this year.

If it wasn’t for this family we would not have traveled to Irvine, California to speak in front of hundreds of people to tell them what God has taught us through the life and death of our son. The video of that presentation, which was our first time speaking in public, has over 80,000 views on YouTube.

If it wasn’t for this family we would not be starting an LGBTQ small group at our church this fall.

If it wasn’t for this family there would not be a rapidly expanding online FaceBook group of parents who love Jesus and who also love their gay/lesbian/bisexual/trans/queer child; this group is the ONLY place that most of the parents feel safe to share how fiercely they love their child without fear of being judged and condemned by their churches.

If it wasn’t for this family we wouldn’t have befriended other parents in our church community whose teenagers have come out to them….we wouldn’t have known them.

If it wasn’t for this family, I wouldn’t have the courage to continue this work. When I have been at my lowest point, feeling beat up by both the right and the left, wishing that I could just go back to my “normal” life, these are the people who remind me to keep listening to God’s voice and trusting HIM with the consequences.

I could go on and on. Without the support and encouragement of this family, who have loved us unconditionally and who have been behind us every step of the way in our journey, we wouldn’t be speaking out on behalf of the LGBTQ community today, especially not in conservative Christian circles, which is where our message needs to be heard, but is often unwelcome.

Please take a few minutes to watch this family’s video, and to read the words of my dear friend, Jodie Howerton, who is doing something that MUST be done in order for all of our kids to have accurate information about how to prevent AIDS. The only way we can stop this disease from killing more of our children is through EDUCATION.

I’m prepared to fight for my son’s right to live in the light.

Several years ago, when my oldest was in 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 1980’s (might have had an update in the early 90’s), 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 anti-retroviral 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 that defies stereotype. He is a survivor and simultaneously, a student that 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 1 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.

Back to my preview of the public school video resources:

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.

Don’t just criticize. Create.

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.

A collective family decision to share.

Before you go to Indiegogo, I need you to know how much thought, discussion, and prayer went in to 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 any more. 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 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 that 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.

We have 30 days to raise money for our “Redefine Positive” campaign on Indiegogo. Would you consider contributing?

Indiegogo Campaign // Facebook Page // Twitter // Pinterest

No Shame About Being HIV Positive

15 thoughts on “Fighting for the Right to Live in the Light

      1. tagricks

        Linda— “tagricks at Steppingstones.wordpress” is the avenue I used to get supporters for my missionary trips….I posted it there, and challenged people to question.

        Reply
  1. Pingback: Would you help the weak? | Stepping Stones

  2. tagricks

    Dear People– I was reading some old posts—and I want you to read this–hear this with your spiritual ears–
    copied from “Gearing Up”….I am just reminded of what The Holy Spirit showed me last week as my census job was coming to an end and I was beginning again the preparations for India.
    One of the things that flew off of the page at me is found in the Gospel of Luke around the 24th chapter (again I think of people who do not have the pleasure- to go look up a scripture); The women had made the preparations for preparing Christ’s Body— the tomb had been sealed– they made the preparations anyway, they could not roll the stone away. They did all that they could do—-the thought that there was a huge boulder in the way did not stop them from doing what they could do – what was in their power to do– and when they got there– the stone was rolled away. Which takes me back to another scripture– Genesis 32 :1 “Jacob also went on his way, and the angels of God met him.”
    Just another stepping stone towards my destinatioin.

    Reply
  3. Kim W

    Thanks for your blog. I am a Christian with a wonderful gay son and I feel a real kindredness with you. I especially want to thank you for sharing your friend’s cause to change what’s being taught in our schools, today. I sit on a local Houston TX non-profit that is trying to abolish the stigma of HIV/AIDS through education and what your friend is trying to accomplish is huge for the future of our children. I donated to her cause and I really hope others who read today’s entry will consider it, as well. Education is freedom. God bless you for all that you are doing in memory and honor of your son.

    Reply

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