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Breon Williams is a 23-year-old with an intellectual disability who has beaten the odds every step of the way. Born at 27 weeks alongside his fraternal twin, Breon spent five months in the NICU, followed by years of early intervention services. Today, he is a Project SHINE youth ambassador, advocating for sexual health education for fellow young people with intellectual and developmental disabilities (I/DD).
“I didn’t think they were going to make it, especially Breon,” said Sonja Williams, Breon’s mother and the Director YAI Knowledge, YAI’s training department. “He had bleeding in the brain and was intubated for a very long time...he had heart surgery—any issue you can think a preemie would have, he had.”
Breon is once again defying expectations and breaking down harmful stereotypes that portray people with I/DD either as nonsexual or sexually deviant. He, along with eight other young adults with I/DD, played a key role in Project SHINE, an initiative launched in 2021 by Planned Parenthood and a network of I/DD agencies, including YAI. Project SHINE fights myths surrounding sexuality and youth with I/DD and advocates for full access to information and care about sex and health for this group.
“Breon’s involvement in Project SHINE has prompted conversations between us about him wanting to be in a relationship, finding a partner, and eventually having sex,” said Williams. “It has forced me to equip him with even more information and have those uncomfortable but necessary talks because there’s a lot to learn about relationships and how to be in a healthy one.”
Over the course of three years, the Project SHINE initiative sought to address inequities in sexual health by ensuring accessible education and health services for youth with I/DD ages 16-24. In May 2024, Project SHINE launched its new sex education toolkit, including an interactive online game.
The toolkit was created to help people talk about sex with young people with I/DD. This comes after research by the Project SHINE network showed parents, caregivers, and even professionals weren't sure how to have these important conversations. The research also found that youth with I/DD are at an increased risk for sexually transmitted infections or have unplanned pregnancies if they don’t learn about safe sex. An earlier Project SHINE study found that the risk of sexual violence is almost five times greater for youth with I/DD compared to their neurotypical peers. Developmentally appropriate sexual health resources help reinforce rights and how to make informed choices.
“Comprehensive sex education for all youth, and particularly youth with disabilities, is more than just conversations about sex,” said Giokazta Molina-Schneider, VP of Education & Training at Planned Parenthood of Greater New York. “Sex education for youth with I/DD must be expansive, clear, and honest, and provide youth with resources to help them make decisions that align with their personal values and goals.”
Williams agreed.
“Society doesn’t see adults with I/DD as adults, they still see them as children, so it’s hard for people to see this population as sexual beings who have the right to love and be loved, and be in sexual relationships,” said Williams. “They need to take those chances that really exist when you are entering the world of relationships, like rejection.”
A key driver for inequities in sexual health outcomes is a lack of access to suitable sexual health information, education, and care, according to the SHINE research findings. The toolkit, which has been created with and tested by youth ambassadors like Breon, includes engaging content on sexual and reproductive health, anatomy, sexual orientation, gender identity and expression, sexual behavior and activity, pleasure, body image, and relationships.
“I learned about body parts that I never knew about because you don’t really learn this stuff in school,” said Breon. “I didn’t know what sex involved and I was afraid to ask questions at first, but being an ambassador opened my eyes to so much and now I am comfortable talking about it with others.”
Breon has since created an online dating profile and hopes to meet someone in the near future.
“I want Breon to have a life that is fulfilled,” said Williams. “Right now, I know for him happiness involves a circle of friends, a relationship, and intimacy, and I hope that it all comes true for him because he deserves it like everyone else.”