This story is part of an ongoing campaign called the Alphabet of Illiteracy. By using letters themselves—the foundation of reading and writing—Project Literacy examines the ways illiteracy underpins some of the greatest challenges facing the world today. Below, we explore the letters A and S, for AIDS and STDs.
When you don’t have access to high-quality sex education, learning about sexual health becomes like a game of telephone: Facts get distorted, passing misconceptions from person to person. Low levels of literacy and poor education skills just add static to the line. And, unfortunately, misinformation isn’t the only thing that spreads.
Around the world, sexually transmitted diseases (STDs) are a major problem, with more than 1 million of them acquired every single day. In a 2015 report, the Centers for Disease Control (CDC) stated that rates of the most common STDS—chlamydia, gonorrhea, and syphilis—were all on the rise. And though STDs can impact people of any age, youth are the group most at risk for these conditions. They’re particularly at greater risk for HIV, the virus that can lead to AIDS, which afflicts an estimated 36.9 million people worldwide, although only 54 percent of them are aware that they have the virus.
New STD cases, including HIV/AIDS, are especially concentrated in areas with high levels of poverty and low levels of literacy, such as in sub-Saharan Africa, home to 71 percent of the world’s HIV cases as recently as 2013. But the United States is no stranger to poverty and disease, and it’s likely no coincidence that STDs have reached epidemic levels in America.
The Bronx in New York City is the poorest urban county in the country. There, less than 70 percent of adults hold a high school diploma. In the Southwest Bronx, 50 percent of households are living below the poverty line. Racial disparities are also evident, with 95 percent of people in the neighborhood identifying as black or Latino. It’s also a “hot spot” for HIV/AIDS, which has a disproportionate impact on black and Latino communities. In general, deaths from AIDS are declining—but there’s still no cure. In 2014 alone, a third of all AIDS-related deaths in New York City were Bronx residents. That same year, 520 new HIV cases were diagnosed in the area.
“We’re 30 years into this pandemic and people still don’t have the correct information on transmission,” says Justin Toro, a social worker with the Adolescent AIDS Program at the Children’s Hospital at Montefiore Medical Center in the Bronx. “Some young people still think you can catch HIV by shaking somebody’s hand.”
Toro suspects that outdated sex-ed programs and pressure to “teach to the test” in schools are part of the problem. Technically, the New York City Department of Education requires teachers to provide HIV/AIDS lessons—but it’s not a topic you’ll find on many standardized tests. “If a principal feels it’s not needed, or there’s something else that’s more important, students may not receive those lessons,” Toro says.
The Adolescent AIDS Program is helping to fill that gap by providing free education to young people in the Bronx who are at high risk for HIV. It also helps HIV-positive youth learn how to manage their condition, so that it doesn’t turn into AIDS. But connecting with young people who have limited reading skills can be a challenge.
“Literacy is huge,” says Toro. “Some young people don’t have reading levels up to the grade they’re actually in at school. So if we hand them a pamphlet they can’t read—guess what? It goes in the garbage. There goes a missed opportunity for education.”
In fact, researchers have found that people with lower reading abilities tend to have more misconceptions about how HIV spreads. That’s a big issue—especially when you consider that more than one in 10 Americans have below-basic literacy skills. To manage that challenge, the Adolescent AIDS Program provides information at low-grade reading levels, in both English and Spanish.
“When we create materials, we want them to not only be motivating for young people—we also really want to make sure they’re understood,” says Dr. Donna Futterman, the organization’s director. “And we want to use words and examples that are familiar to them.”
To make sure they reach everyone, the program goes a step further, integrating games and storytelling into sex-ed workshops to create an impactful experience. It’s especially important to help participants understand and challenge the stigma surrounding HIV/AIDS, since that can inhibit people from getting tested or seeking treatment.
One of Toro’s go-to games to tackle this issue is the “stigma icebreaker” game. Participants wear sticky notes on their foreheads that label them as stereotypical HIV-positive characters—such as “gay-identified individual” or “drug user.” As the group interacts, participants have to guess which stigma they’re wearing.
“It helps show how everybody has ideas about certain stereotypes,” Toro explains, “and we need to rethink how we engage with people.”
Toro, who was born and raised in the Bronx, also shares his own experiences as an HIV-positive man to help young people connect what they’re learning to a real person. “Disclosing my own personal story, that’s something that really brings it home to young people,” he says. “That’s usually when the questions come about transmission and HIV testing.”
Putting a personal spin on HIV-prevention is a popular strategy for many organizations. In fact, some researchers suggest that people are more open to messages that come from peers and “near-peers” who use local lingo and familiar cultural references. In Atlanta—900 miles south of the Bronx—SisterLove offers Healthy Love Workshops to help women learn about AIDS prevention and healthy relationships. Condoms, masturbation, and oral sex are just a few of the topics on the table.
The nonprofit organization, which is especially focused on reaching women of color, is operating in the heart of the American AIDS epidemic: With only 28 percent of the U.S. population, the Deep South has 38 percent of the country’s HIV cases.
“Healthy Love is a safe space for individuals to talk about sex and sexuality,” explains LaKeisha Coach, SisterLove’s program manager. “Throughout the workshop, we play games to help calm the participants down, so they feel comfortable talking ... [Then] we help them go over risk assessment, to go over behaviors that place them at risk for HIV and AIDS.”
Those subjects don’t get much coverage in many of Georgia’s schools, where abstinence-focused sex education is still the norm. For example, one Healthy Love participant, Val Smith, never learned how to use a condom in school, a gap in her education that she believes left her vulnerable.
Proper condom use is one of many topics covered in SisterLove’s workshops, through hands-on demonstrations and games. With the lights turned off and music playing, participants race to put condoms on model penises. It gives them the chance to practice using condoms under pressure, mimicking the conditions they might face with an impatient partner.
While many of SisterLove’s participants are high-school or college-age women, the organization also runs programs for senior citizens at local retirement homes.
“The thing we’re proud of is that [the program] goes from young to old,” Coach says. “And it’s the same. Sex is sex.”
Whether they’re reaching youth in the Bronx or senior citizens in Georgia, organizations like the Adolescent AIDS Program and SisterLove are sharing the facts on STDs. Halfway around the world, UNICEF is also using games and interactive activities to overcome the challenges of poor sexual education and low literacy levels. Participants in their programs are getting the facts they need to protect themselves—and help stop the spread of misinformation before it leads to disease.