The Importance of Discussing Sexual Nuances

What Parents, Educators, and Disability Service Providers Need to Know

In the months before his 30th birthday Darryl* adamantly and repeatedly told his staff that on his 30th birthday he “is going to have sex.” He previously never expressed any interest in having a sexual relationship, so why now? As a teenager, when he expressed any interest in a romantic relationship or sex, his parents told him that he had to wait until he was 30. This arbitrary age was set by his parents to delay talking with him about sexuality and “protect” him from being accused of “doing something wrong.” They hoped by then he would forget or lose interest in sex. He waited, but did not forget. A well-meaning piece of information meant to protect him led to an expectation and (mis)understanding on his part. This could have devastating effects, even resulting in involvement with the criminal justice system – depending on how he chose to act on his expectation when the day arrived – and whether that misunderstanding was addressed by his parents or staff in the meantime.

The aim of this article is to illustrate the importance of our role as parents, educators or disability service professionals in acknowledging and understanding sexual nuance, and its potential connection with behaviors that can involve people who have intellectual and developmental disabilities (I/DD) with the criminal justice system. Sexual expression is a natural and central aspect of being human. It is tied to the extent to which human rights are respected, protected, and fulfilled. Over the past 40 years, changes in disability philosophy and ideology have emphasized person-centeredness, inclusivity, and the rights and responsibilities of people with I/DD. While this new paradigm acknowledges and affirms the rights of people with I/DD to express and experience solo and consensual partnered sexual behavior, it has simultaneously created considerable challenges at the individual, family, and provider agency levels in how we communicate about sexuality. How do we know how people with disabilities internalize the sexual messages they receive from us, or through watching television and movies, listening to music, and viewing social media? Trying to navigate the line between protecting sexual freedom and protecting an individual with I/DD from harm from a legal perspective adds to the challenge, especially when trying to understand the unexpected consequences of our “good intentions.”

Inclusion and self-determination, two of the philosophical cornerstones of the disability movement, are the bridges that connect persons with disabilities to the world around them. How these philosophical constructs are operationalized on a day-to-day basis can be tricky and create unintentional gaps that may put an individual at risk. This is not to suggest that every effort should not be made to develop and build on these philosophical concepts. Rather, it is to recognize the importance of sexual nuances.

What are sexual nuances? Sexual nuances are subtle distinctions that often go unnoticed by family members, educators, and professionals, especially when developing an Individual Education Plan (IEP), Individual Service Plan (ISP), or Individual Health Plan (IHP). Sexual nuances are frequently overlooked because they are not part of a curriculum or discussed with family or friends. For example, James*, a male high school student with Down syndrome, made the football team. He and his family were excited for the opportunities that playing on a sport team provides – the comradery of being part of a team, experiencing and learning how to manage the highs and lows of winning and losing, building friendships, and being “one of the guys.” It all seemed so straight forward and positive – a notable example of self-determination and inclusion. But it is common for adolescent and adult athletes to engage in certain behaviors, such as to chest bump another player, snap a rolled towel against someone’s backside, or slap another player’s naked butt. These actions are often considered part of team culture and accepted as locker room behavior. Students without disabilities usually understand the boundaries and consequences these behaviors pose if performed in a different environment and with non-team members. However, for James, no one had checked that he understood that the acceptable team behavior in the locker room after practice or a game may not be appropriate in other settings, such as at a YMCA, athletic club, and public or private swimming pool. Engaging in these behaviors in other settings could be viewed quite differently by the recipient of the behavior and even considered a criminal act. Conversations concerning sexual nuances, such as locker room team behavior, need to be a regular part of the team’s orientation for all players, not just athletes with disabilities. These conversations should be clear and concrete, avoiding generalizations and using non-judgmental words and body language. Similar conversations should also be held by James’ parents or guardian.

Another example of the importance of sexual nuance, and consequences of missing it, can be found in an incident involving Dylan*, a boy with autism who attended a public elementary school in a self-contained classroom, that is, a classroom with a bathroom located within it. When the students in the classroom went to lunch, attended an all-school program in the auditorium or went outside to watch an activity, they were instructed by the teacher to “stay in line” and “fill-in” the seats, typical instructions for any elementary school teacher to give students. When Dylan was ready to transition to middle school, his parents and transition team worked with him to create a seamless transition plan. He toured his new school – his classrooms, the auditorium, gym, school bus pick-up and drop-off area, sports fields – met his new teachers, walked the halls, and located his locker. His team worked with him on his social skills and role played how to make new friends by suggesting that complimenting another student is a good way of starting a conversation. Sexual nuances were not part of the transition preparation.

During the first week of school, Dylan asked to be excused from class to go to the bathroom. He entered the bathroom and saw another student standing at a urinal. He went to the urinal closest to the other student. He looked at the other student, and said, “Wow, nice penis.” He did what he was taught. He filled-in the seats (urinals), started a conversation, and complimented the other student based on conversations he overheard from other male students. He followed the transition guidelines, but was not successful. In fact, he was accused of sexually harassing the other student.

The other student was not traumatized by the physical closeness or the comment. He was not upset. He simply went back to class. At the end of the school day, a teacher over-heard him telling his friends about the “strange” guy in the bathroom. The teacher asked the student for more details of the incident. The student indicated that there was no problem, but the teacher insisted on knowing what happened. Once the student recounted the incident, the teacher reported it to the school resource officer and principal. The result of the meeting was that for the rest of the school year a male custodian would accompany Dylan to the bathroom, stand outside the bathroom door, and then accompany him back to class. With the exception of humiliating him and reinforcing disability stereotypes, what purpose is there to have a custodian accompany the student to the bathroom, stand outside the bathroom, and then accompany the student back to his class? Dylan correctly followed all the guidelines he was taught: “fill-in the rows,” take the initiative and start a conversation, and give a compliment.

Bathroom etiquette is synonymous with sexual nuances. Bathroom etiquette rules for males include don’t look anywhere except at the wall directly in front of the urinal you are using, don’t talk to anyone, never comment on another man’s genitals, and always leave at least one urinal between you and another person. Bathroom etiquette is not included in health curricula, nor is it generally discussed. As one father said, “It’s a man rule; you just know it.” For individuals with disabilities, “you just know it,” may not apply.

Another example of sexual nuance is how the word “friend” can be used to blur the lines between friendship, dating, predatory grooming behavior (making an emotional or “friendship” connection with a person as a set-up to abusing them), and manipulation. Twenty-year-old Yvette* worked evenings at a local mall. She has I/DD, and had successfully taken public transportation for several years. There were usually very few people on the bus when she got on at the end of her work shift. One night the bus driver offered to drop her off at a bus stop closer to her home if she waited until everyone else got off the bus. This stop was not on his official route. He told her that since her route was the last one of his day he would be happy to swing by the stop closer to her home on the way back to the bus terminal. She agreed. He made the same offer on the next few nights saying, “This is what friends do” and “Such a pretty girl should be careful walking home at night.” Each night he complimented her, telling her how pretty she was, how special she was, how lucky he was to be her friend. Having gained her trust, one night when she was getting off the bus he asked her for a goodnight kiss. He said it was okay because, “That’s what friends do.” She liked the attention, she liked the kiss, she liked getting off at a bus stop closer to her home, and she liked the thought of having a boyfriend. The kiss evolved into fondling and eventually oral sex on the bus. One night she said no, she didn’t want to have sex on the bus any more. He told her, “It’s our special place, our secret.” When she continued to resist he told her he’d no longer be her friend.

Yvette was an adult who worked part-time, lived independently, wanted to be like the other young women she knew from work who had boyfriends, and consented to the sexual acts when they started. She was afraid that if she told her parents about what was happening on the bus they would make her move back into their home. She was afraid that if she told her staff or co-workers, they would call the police. She decided to tell no one. Afraid of the bus driver, she quit her job, became reluctant to take other public transportation, stayed in her apartment, and blamed herself for what happened. This situation could have had a different outcome had Yvette been engaged in discussions with her parents – in adolescence and even as an adult – about the differences between and consequences of friendship, flirting, dating, grooming or abuse, and manipulation. But those conversations about sexual nuance didn’t take place.

We live in a society bombarded with sexualized images and messages and yet this society is reticent to talk about healthy sexuality. Sexuality is usually discussed from a fear perspective – the “don’t.” Most people learn about sexuality during puberty and adolescence. An individual’s middle school and high school years are likely to be the last time they receive formal comprehensive sexuality education. It’s a time when a student’s own values about themselves and others are developed and crystallized. This is a perfect time to introduce and integrate concepts and examples of sexual nuances into typical health curricula; social stories; and transition planning from elementary to middle school, from middle school to high school, and from high school to work. When we shift our thinking to include looking at how social norms and sexual nuances are taught and then experienced by individuals with I/DD, we reduce the risk of them becoming involved with the criminal justice system as victims, suspects, and defendants. By creating and sharing this knowledge, systems are changed, self-determination is promoted, and disability and sexuality are recognized as a natural part of the human experience.

Reprinted with permission from Impact: Feature Issue on the Justice System and People with Intellectual, Developmental, and Other Disabilities (Spring 2017), published by the Institute on Community Integration, University of Minnesota. Retrieved from https://ici.umn.edu/products/impact/301/.”