“I was in the mainstream health class in high school, learning about health with students without disabilities. When the sexuality unit started, they removed me from class.” ~Anonymous Self-Advocate
I remember the shock I felt when a self-advocate told me this story. What a strong message to send to someone with a disability. My first thought was: it is okay to learn about physical activity and nutrition, but as soon as the sexuality unit starts, we take you out of class and indirectly tell you that you don’t need that kind of information. My second thought was, had I been transported back in a time machine, and it was actually the 1940s?
Many professionals who work with people with developmental disabilities often wonder whether they need to talk about sexuality. They may not think a person with developmental disabilities is a sexual person because of their disability, or they may feel afraid that talking about the topic will spark the person’s interest in sex and cause them to start having sex.
We are all sexual beings and need sexuality education.
Why is it vital that we talk about this topic? There are many reasons, but first and foremost, we are all sexual beings! Even though the culture and media present a narrow view of who is considered sexual, we really are all sexual beings. This view would have us believe that only thin, blonde, strong, physically fit, tall, young, able-bodied people are sexual. We must remember that all people–including people with developmental disabilities – are sexual! People with developmental disabilities are often left out of the conversation about sexuality, but in reality, they, too, have thoughts, feelings, and concerns about sexuality, just like everyone else.
While it’s important to acknowledge that people with developmental disabilities are sexual and have thoughts, feelings, and concerns about sexuality, it is also true that much of the information they receive is inaccurate. Because many professionals are unwilling to discuss these issues with them, many people with developmental disabilities get information about sexuality from television, which may be incorrect or misleading. This is another reason why it’s vital to talk about sexuality – to explain information they’re getting using language they can understand and to be sure that the information they are getting is accurate. In addition, sometimes messages about sexuality on television can be negative, and people need to be able to give positive messages about sexuality and understand their own values about sexuality.
How do we learn when we are isolated?
Another issue for people with developmental disabilities is that they may be very isolated or not have many friends. When isolated, they often miss out on the informal learning that happens while hanging out with friends. This is a way that many people have learned about sexuality. Friends often talk about who they have a crush on or how their bodies change as they go through puberty. Sometimes, these conversations happen at school, and sometimes, when they are with their friends outside of school. People with developmental disabilities may not be in a school setting where informal learning occurs and don’t have opportunities to hang out with friends to discuss these concerns.
Look at the statistics.
In a nationally representative sample of middle and high school-age youth (7th to 12th graders), the association of low cognitive ability with increased risks of sexually transmitted infections (STIs) among adolescent boys and girls was found to be substantial. These findings indicated that 8% of adolescent male participants with intellectual/developmental disability(I/DD) had been exposed to an STI, as compared to only 3% of males with average intellectual ability; for sexually active adolescent females, 26% of those with I/DD reported having an STI, a sharp contrast to 10% of adolescent females without a disability.[1] The same study found that nearly 40% of teenage girls with I/DD had become pregnant—more than double the 18% rate of teenage girls without a disability.
Concerning the incidence of unplanned pregnancy, scant data exists on the frequency of pregnancy among adolescents and young adults with developmental disabilities.[2] A recent study using data from the National Longitudinal Study of Youth suggests that young women with I/DD are at increased risk for early sexual activity and early pregnancy.[3]
According to the Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation, and the National Public Radio series Abused and Betrayed, people with I/DD are 7 times more likely to be sexually abused than someone without I/DD.[4] A critical issue in sexuality education is the prevention of sexual abuse. People with developmental disabilities are at risk of being sexually abused because they are frequently taught to comply with what others are asking them to do, and they often want to please others. Understanding various aspects of sexuality and relationships makes it easier to understand what is healthy and what is not healthy and that it’s okay to say “no” to unwanted touch.
You can have an impact.
Even if you agree sexuality education is important, there are lots of reasons you don’t talk about it, and without talking about it, the statistics can’t improve. You may not know how to begin or what to cover. You may know what to cover but don’t know how old a child should be before you start talking, or you may fear that talking about it will encourage sexual activity. Or, you may not even know what you believe regarding sexuality.
This is why we do what we do. We hope to elevate, educate, and navigate this topic by providing accurate and practical educational materials and training. Many people have said that talking about sexuality was a lot easier than they thought it would be and have gained confidence in this area with just a little support.
Remember, ignorance may be bliss, but knowledge is power. People with disabilities deserve and need knowledge just like anyone else, and you can help elevate us all.
References
[1] Cheng, M., & Udry, J. (2005). Sexual behaviors of physically disabled adolescents in the United States. Journal of Adolescent Health, 31, 48-58.
[2] Jones, K. H., Woolcock-Henry, C. O., & Domenico, D. M. (2005). A wake-up call: Pregnant and parenting teens with disabilities. International Journal of Special Education, 20(1), 92-104.
[3] Shearer, D. L., Mulvihill, B. A., Klerman, L. V., Wallander, J. L., Hovinga, M. E., & Redden, D. T. (2002). Association of early childbearing and low cognitive ability. Perspectives on Sexual and Reproductive Health, 34(5), 236-243.
[4] Source: Bureau of Justice Statistics, National Crime Victimization Survey, Special Tabulation
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Katherine McLaughlin, M.Ed., AASECT Certified Sexuality Educator, is the Founder, CEO, and Lead Trainer for Elevatus Training. As a national expert on sexuality and intellectual and developmental disabilities, she trains professionals, parents, and individuals to become sexual self-advocates and peer sexuality educators. Contact Katherine at elevatustraining.com.