Sexuality: It’s More Than Just Sex!

By Charles Dukes and Pamela Lamar-Dukes Florida Atlantic University

Thomas is a 12-year-old boy with autism. He loves his laptop, his MP3, a well-cooked hamburger, swimming, and just recently he has discovered masturbation. Mike, a 26-year-old man with an intellectual disability, also enjoys his laptop and although he discovered masturbation a while back, he does not have the same passion as Thomas, but Mike has discovered some very interesting images on his laptop that all feature women with very little clothing.

Jessica, a 32-year-old woman with an intellectual disability, enjoys playing her small electronic piano, loves to watch television shows from the 1980s, and taking walks in her neighborhood. Her communication skills are limited, and she interacts very little with anyone except for her parents. It is not clear whether she has any interest beyond her piano, taking walks or watching television shows.

Although, many people have asked, she doesn’t seem to have much interest in meeting people or leaving her family’s home on a regular basis. It is very likely that each of us knows someone with a passion for food, electronics, masturbation or pornography. It is also quite possible that each of us knows someone who may have limited interests in activities or other people.

Interest in sexuality is not confined to people without disabilities, but the mention of disability, particularly intellectual disability, and the nature of the conversation seems to change, often times not for the better. The intersection of disability and sexuality is still not well understood, or at the very least, does not seem to be considered in the same light as some aspects of a quality of life (e.g., housing and employment). This dismissal of sexuality seems to be misplaced, as many people with disabilities rank intimacy as very important. In fact, intimacy is considered a part of one’s quality of life, regardless of disability.

Useful questions

There is no doubt that sexuality is extremely difficult to discuss honestly and openly for anyone, but difficulty does not mean impossibility, and there are some simple, yet highly useful questions that can be used to help engage in a healthy conversation about sexuality that may not make conversations about sexuality easy, but perhaps a bit easier. Before moving into these questions, it is necessary to briefly discuss the meaning of sexuality and how an expanded definition of sexuality that goes beyond sexual intercourse alone can facilitate understanding of the questions.

Sexuality encompasses the thoughts, attitudes, cultural beliefs, desires and knowledge one holds about intimate relations with another person. The implication of this broader definition beyond sexual intercourse allows one to see that there exists a number of factors that can contribute to sexuality and help one to think about the implications of a sexual life that involves more than the prospects of having or not having sexual intercourse.

Think about Thomas: so he spends some or maybe a great deal of his time masturbating, but this is not the extent of his sexual life. He interacts with his parents, and they share their values, ideas and attitudes about his sexuality and these interactions have some influence on Thomas. Similarly, Mike is influenced by the images he chooses to view on the Internet. Whether talking to his peers or parents,those interactions too have some influence on the way Mike interprets those images and contributes to his understanding of his own sexuality and how he may relate to others. In essence, sexuality involves more than the physical behavior.

A person’s sexuality also encompasses all of the things that influence their behavior to engage in a relationship with another person or not, to feel positively or negatively about their behavior, or to place value on the behavior.

With an understanding that sexuality is a broad issue that includes intimate relationships and so much more, a series of six guiding questions will be introduced that can help frame one’s thinking about sexuality as well as conversations with and between people with and without disabilities.

These guiding questions address different aspects of sexuality and are an attempt to help anyone thinking about sexuality and disability to consider the knowledge and supports that will contribute to a healthy lifestyle that includes sexuality.

The questions address the broad areas of personal perceptions, knowledge and support. Personal perceptions are really important and often act as a barrier to open and honest conversations about sexuality.

How do you feel?

The first question that can be asked is, “How do you feel about sexuality and disability?” Personal views on a host of issues can be tapped using this question. How might one feel about Thomas and his activities or Mike and his decision to watch videos? Might someone expect that Jessica fit some stereotype about the “asexual” individual with a disability? Clarification of perceptions is critical to beginning any sort of conversation on sexuality.

The second question, “What do you know about sexuality?” is intended to help everyone involved in the conversation to be aware of what is and is not understood about sexuality issues. Many people with disabilities learn a great deal about body parts, physiological changes associated with the body, as well as some other aspects of human biology.

Consequences

What is not as well known, generally speaking, are the consequences of engaging in sexual intercourse or methods of contraception. There is also another side to the knowledge question. While human biology is known on some levels, the joy, sorrow, and ups and downs of intimate relationships are not as well known. It is reported that people with disabilities do not have as many intimate relationships as they would like, which almost assuredly means that there are some aspects of the human experience that are not as well understood as one would hope.

The third question, “what do you want to know,” is closely related to the second and highlights the need to not only assess current knowledge, but also gain some understanding of what needs to be taught, which leads into the fourth question.

“What should be taught?” is the fourth question and one of the most critical in the series of six. These questions are based on an assumption that everyone is sexual to some degree and in some way, and therefore, everyone needs to know on some level how to relate to others, which includes sexuality. Directly teaching social skills to more effectively interact with another person or even direct instruction in masturbation techniques are fair considerations.

Who will teach it?

The fifth question, “Who will teach it?” is perhaps more difficult for people without disabilities than it is for people with disabilities. Think about the multidimensional nature of sexuality. Think about the misconceptions many hold about people with disabilities or even the prospect of trying to teach something perceived as so private an issue. Keep in mind that difficulty is not impossibility, and with the appropriate information and an open mind about a satisfying life that includes different interpretations of a sexual life, it is possible to begin the ongoing process of discussing and teaching sexuality.

The sixth and final question is a multi-part question, “Where, when, and how will the person with a disability be supported to live a healthy sexual life?” This question is intended to bring everything together and direct the conversation to include a serious consideration of life beyond sex education and into the reality of an existence that includes real opportunities for a host of different kinds of intimate relationships.

There are no absolutes

Clearly, sexuality is a broad issue that must be considered in the context of morals, values, religious ideas, culture and one’s living conditions. There are generally no absolutes but rather a host of perceptions and feelings that need to be clarified, along with a due diligence to bring sexuality issues to the front and center for real consideration. Using the six questions discussed here, it is possible to begin a journey into an often ignored aspect of life for people with disabilities.

Pamela Lamar-Dukes is a doctoral candidate at Florida Atlantic University in the Department of Exceptional Student Education. Pamela has been a professional educator for 18 years, working with
students from elementary to college. Her work is directed toward increasing opportunities and creating successful inclusive educational experiences for students with disabilities. Pamela’s research interests include: employment for individuals with severe disabilities, family systems, sexuality and positive behavioral interventions.

Charles Dukes is an associate professor in the Department of Exceptional Student Education at Florida Atlantic University. His professional activities revolve around improving the lives of individuals with intellectual or developmental disabilities. Charles’ research interests include: positive behavioral support, quality of life issues for individuals with significant disabilities, sexuality and cultural issues for individuals with disabilities.

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