SEATTLE – When her daughter was going into the fifth grade 2 years ago, Jodie Howerton reviewed the HIV/AIDS educational materials that would be used in her child’s class – and was appalled by what she saw.
The opening clip of a video, circa early 1990s, featured this headline: “Thousands die of AIDS.”
In it, the human immunodeficiency virus (HIV) was dressed as a growling, red monster, and there was a cameo appearance by the Grim Reaper.
The outdated images and statistics about AIDS (acquired immunodeficiency syndrome), and the virus that causes it, were particularly troublesome to the Woodinville, Wash., mother of three, who had adopted a son born with HIV and who worried the video would perpetuate existing stereotypes.
Treatment for HIV/AIDS has advanced light-years in the 3 decades since the first U.S. cases were reported. Now, with proper medications, those infected can live long and relatively healthy lives.
“There was not a word about being born with the virus,” Howerton said of the video, which the district has since stopped using. “It was a scary, fear-based video that would teach people how to be afraid of my son.”
Working with the Northshore School District where her daughter was enrolled at Cottage Lake Elementary School, Howerton scoured the Internet for current and age-appropriate videos to replace the district’s last-century set.
Finding none, the communications specialist set about to make some.
As part of a campaign she’s calling Redefine Positive, Howerton sat down a year ago with representatives from the state Office of the Superintendent of Public Instruction, Seattle Children’s Hospital Foundation, Public Health – Seattle & King County, Northshore schools, and other parents and advocates to discuss a series of documentary-style educational videos that could be used not just at her children’s school, but in elementary, middle, and high schools throughout the state.
Production work on the first two videos is to begin in November.
“Not many kids are being born in the U.S. with this disease, but a number of kids who are HIV-positive are being adopted,” she said. “These kids, like my son, are going to sit down in classrooms where inaccurate, outdated information is being presented.”
Howerton says she worries that without the latest and most accurate information, children like her son would be discriminated against and ostracized.
“It’s time to educate all our kids in a way that reduces the devastating stigma still associated with HIV.”
Washington is one of 33 states along with the District of Columbia that mandate schools teach children about HIV/AIDS. The state Legislature passed the law at the height of the AIDS epidemic in 1988, requiring that education on the “life-threatening dangers of the disease, its spread and prevention begin in the fifth grade.”
Parents are allowed to review the teaching materials.
While OSPI establishes model curricula that districts can use in elementary, middle, and high school, it’s up to each district to determine how that information is delivered.
Many use videos to supplement written material and classroom discussions — accommodating those students who are better visual learners, said Suzanne Hidde
She said her office has heard directly from parents and districts that some of the videos being used are outdated or inadequate. Many of them have outdated statistics or present the progression of the disease as it stood before the development of antiretroviral drugs that control the virus.
Hidde said state and local budget constraints have kept the information from being updated.
“Often school districts use material that might be older – maybe a textbook, video, or DVD – and supplement it with more recent, updated information,” she said.
OSPI has a lending library with material that districts may borrow, but that, too, is old, and Hidde said the agency is updating it and may discontinue it because many districts use streaming videos.
Sandra Tracy, health and nursing supervisor for the Northshore schools, said the district was aware the fifth-grade video wasn’t perfect and for years had been searching for a more recent one – without luck.
“The videos are supplementary; they’re not required,” she said. “Many teachers like to use them as a way to start the dialogue.”
After Howerton raised concerns, the district replaced the fifth-grade video with the one used for sixth-graders – a perhaps less engaging one that features adults talking to children about AIDS.
Twenty years ago, Tracy said, more parents would come to the school to view the HIV/AIDS material because the disease was still new and parents were concerned about what schools would be telling their children.
These days, not so much.
Howerton first met her son, Mduduzi (they call him Duzi), 6 years ago on a humanitarian trip to South Africa where he was living in a group home.
He was 2 at the time and had been born with HIV. For the first time, Howerton said, she began learning about the disease “in a very real way.”
“We didn’t go to South Africa thinking we would adopt; it was never part of the plan. My husband and I had two healthy kids at home, and we thought we could easily parent these kids.”
Duzi came home with the family 3 years ago when he was 5.
Self-employed, Howerton has spent hours over the past year working on promotion and fundraising for her video campaign. There’s no money in it for her.
She estimates it will cost $125,000 to produce all four videos. She’s using the crowdfunding platform
The videos will feature people from all walks of life living with the disease and will carry current statistics and information about prevention, transmission, and compassion.
“The idea is to remove the stigma,” Howerton said. “You don’t want to get this, but you don’t have to be afraid of people who have it.”
To draw attention to the effort, the Howertons posted online a promotional video that features them as a family – Duzi, now 8, and his siblings jumping on a trampoline, playing with the family dog, being children.
Howerton said the family agonized over revealing Duzi’s HIV status in such a public way and that she’s been criticized by other parents for the decision to do so.
“Our decision was about guaranteeing he gets to live in the light – no matter what,” she said. “If this was leukemia or some other disease, there wouldn’t be a question about whether to share it.”
She acknowledges that her son, as he gets older, might be mad at his parents for disclosing his condition. “But we believe we are preparing him to be unashamed forever.”