Reflection Paper: Sexuality and Adults with Intellectual and Developmental Disabilities

Like all people, individuals with developmental disabilities (DD) have inherent sexual rights and needs. It is those who work with or serve as caregivers for these individuals who must affirm, defend, and respect these natural rights (Hetzler, 2016). Yet many who are considered the “normal” part of the general population prefer to view individuals with developmental disabilities as asexual children. People with these views usually do not acknowledge those with DD as having a need for fulfilling partnerships or love. When such a shallow stance is taken, it essentially denies individuals with DD their rights to sexuality—a  key component in the well-being and health of all people. This negative standpoint affects those with DD in many ways; having possible adverse effects on their self-esteem, social behavior, body image, emotional growth, and gender identity (Hetzler, 2016). Even within the school system, individuals with DD are often kept from sexual education that is comprehensive, medically precise, factual, and developmentally and age-appropriate (National Conference of State Legislatures, 2016).

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When sex education is inadequate or not included, many individuals—especially those with DD—become prone to risky behavior. For example, those with DD may engage in sexual activity for the wrong reasons—manipulation, physical force, loneliness, etc. (Hetzler, 2016). Disallowing the expression of true sexuality and denying individuals with DD their sexual rights can lead to circumstances of abuse and forced sterilization. Sterilization and limiting the sexual rights of those with DD have long been contentious issues, and research has highlighted the current nature of these issues. Fully enacted, should be an approach that respects the privacy/confidentiality, dignity, and sexual freedom of those with DD.

Major Issues and Trends

Graduate student Laura Elliot (2017) highlighted the issue of forced sterilization for women and girls with disabilities. Forced sterilization is a significant issue because it pushes the agenda of those with closed minds. Many women and children are currently being coerced into sterilization even after refusing the procedure. Moreover, it is often without their knowledge or consent—by way of misinformation, financial incentives, and intimidation—that these females undergo these procedures. Although there are many international treaties and laws in place to protect individuals’ sexual and reproductive rights, forced sterilization remains widespread Elliott, 2017). Dating back to 20^th century U.S. policy, there were more than 60,000 citizens sterilized by 1960 in hopes of preventing any of them from having offspring with hereditary diseases (Hetzler, 2016). It is and should continue to be physicians’ duty to adequately disclose any necessary information about a patients diagnoses to them, to include those with DD, in a way that explains treatment options, risks, benefits, and alternatives in a comphrensive manner (Weller, n.d.).

Individuals with DD should be entitled to the same fundamental rights to sexual health information as everyone else. Professionals and families often struggle with openly discussing issues regarding sexuality, with or around those having DD. More often then not it is lost among these professional and family members that sexuality is more than just sexual behavior. Sexuality encompasses the physical, mental, and spiritual components that make up a person’s personality (Weller, n.d.). Depending on who is in the position to care for and make informed decisions for those with DD, every event regarding sexuality is treated differently — having no set standards of practice. Research further indicates that those with DD have limited sex education information available to them, which often causes them to view their sexuality negatively and results in confusion about what is acceptable behavior for them and from others (Weller, n.d.).

Current Challenges

Although laws surrounding sex education and sexuality have become more progressive, caregivers and parents of those with DD often take matters into their own hands by imposing their own ideas of sexuality onto these individuals. A study conducted by Pownall, Jahoda, and Hastings (2012) compared behaviors and attitudes about developmental sexuality from mothers whose children had DD to those who did not. The results revealed that mothers of young people with an intellectual disability hesitated more at teaching their children about sex, contraception, and decisions about intimate relationships (Pownall et al., 2012). These mothers voiced additional concerns about the sexual vulnerability of their children with DD; for example, these mothers consciously discussed fewer sexual topics with their children, instead opting to wait until they viewed their children as “older” (Pownall et al., 2012). Research like this affirms that parents of children with DD continuously avoid topics of sexuality. They seem to think it is not relevant and feel they do not want to confuse, frighten, or further complicate their children’s lives by talking about sex too soon.

Nevertheless, all children are learning about sexuality all the time, both through sexual images and messages in media and through the observation of other people’s behaviors. Ultimately individuals with DD will learn about sex whether it is discussed or not. When caretakers and guardians do not speak to their children about sex, they inadvertently convey that sexual expression is inappropriate. If young people anticipate being reprimanded or judged for their sexuality, they are unlikely to feel comfortable raising their concerns or worries; essentially sexuality becomes something embarrassing and shameful to them. The time has come for parents to at least become more proactive in discussing sexuality with their disabled children. Moreover, it may be helpful to emphasize to parents that discussing sexuality with their child does not equate to the child’s readiness to engage in sexual activity.

A Call to Action

The Arc and the American Association on Intellectual and Developmental Disabilities (AAIDD, 2013) issued a joint statement on the sexual rights of persons with DD, stating: “Every person has the right to exercise choices regarding sexual expression and social relationships. The presence of an intellectual or developmental disability, regardless of severity, does not, in itself, justify loss of rights related to sexuality.” Thus, all individuals have a right to interpersonal relationships. Those with DD should be free to develop emotional, sexual relationships where they can express themselves and feel loved. It is those around them who are charged with respecting their privacy, dignity, confidentiality, and freedom to associate (AAIDD, 2013). Although this is not often the case, the sexual education and expression of individuals with DD should be safeguarded and reflective of their own circumstances, morals, values, and culture (AAIDD, 2013). Education and informed decision-making should be encouraged and not suppressed. Cases of reproduction, marriage, family, safe sexual practices, sexual orientation, abstinence, sexual abuse, and sexually transmitted diseases should be addressed with all individuals, including those with DD (AAIDD, 2013). What is currently lacking across the many perspectives of the nation’s people is the idea of protection for those with DD from instances of sexual harassment, which can take the form of physical, sexual, and emotional abuse (AAIDD, 2013). Individuals with DD are constantly being stripped of their rights and denied educational materials that inform them of their liberties (e.g., to have and raise children). Instead, they are coerced into situations such as sterilization.

Conclusion

While the idea of being compassionate leads many to shelter those with DD from topics that are sexual in nature, it can also increase the risk that these individuals will be subjected to abuse, sterilization, low self-esteem, antisocial behaviors, body image issues, and more. Sterilization and limiting the sexual rights of those with DD have shown that caretakers, families, and healthcare professionals must help those with DD to safely navigate human sexuality while also upholding their rights of obtaining sex education and pursuing/ having relationships in a way that respects their privacy, dignity, confidentiality, and freedom to associate.

References

• American Association on Intellectual and Developmental Disabilities. (2013). Sexuality. Retrieved from https://aaidd.org/news-policy/policy/position-statements/‌sexuality#.V1CbrDUrJD9
• Elliott, L. (2017). Victims of violence: The forced sterilization of women and girls with disabilities in Australia. Laws, 6(3), 1–19. https://doi.org/10.3390/laws6030008
• Hetzler, L. (2016, June 23). Sexuality and adults with intellectual and developmental disabilities [Blog post]. Retrieved from https://www.relias.com/blog/sexuality-and-adults-with-intellectual-and-developmental-disabilities
• National Conference of State Legislatures. (2016). State policies on sex education in schools. Retrieved from http://www.ncsl.org/research/health/state-policies-on-sex-education-in-schools.aspx
• Pownall, J. D., Jahoda, A., & Hastings, R. P. (2012). Sexuality and sex education of adolescents with intellectual disability: Mothers’ attitudes, experiences, and support needs. Intellectual and Developmental Disabilities, 50(2), 140–154. doi:10.1352/1934-9556-50.2.140
• Weller, M. R. (n.d.). Supporting individuals’ right to sexual knowledge [PowerPoint slides]. Retrieved from https://gotoipmg.com/images/body-images/Supporting_Individuals_Right_to_Sexual_Knowledge.pdf.