Debunking the Myths About Sexuality and Developmentally Disabled People
How do the sexual myths surrounding people with mental and developmental disabilities keep them from enjoying the same sexual freedoms as everyone else?
For two weeks last July, Stephanie was not allowed to spend any time alone with her fiancé Michael. "Things are a mess," she told Richelle Frabotta, a sexuality educator with the American Society of Sex Educators, Counselors, and Therapists (ASSECT).
Frabotta was confused. Four months earlier, she and a multidisciplinary team of professionals created a plan, which included a recommendation that the staff at Stephanie's residency should arrange private time for the couple. The plan included a recommendation to put mattresses on the floor, so that Stephanie and Michael, who both use wheelchairs, might be able to experience physical intimacy.
This was not the first time that Stephanie and Michael had problems spending time alone together. Even after the team created a plan, some caregivers did not feel comfortable supporting the couple's private time. These caregivers refused support because the fact that Stephanie and Michael might engage in sexual activity violated the caregivers' personal beliefs.
The Sexual Rights of People With Developmental Disabilities
Stephanie and her fiancé Michael are both "developmentally disabled," a term used to describe individuals with brain damage, mental retardation, autism and other conditions. MRDD, short for mental retardation and developmental disabilities, is also a commonly used term. Stephanie experienced brain damage after an automobile accident her freshman year at college, while Michael experienced brain damage after a motorcycle accident.
Stephanie's caregivers are allowed to prohibit her intimacy with Michael based on their own personal beliefs, since Stephanie's residency, or agency, has no official policy regarding sexual activity. And as ASSECT sexuality educator Susan Vilardo explains, "Agencies don't lose their funds from the state for not tolerating sexual activity." Still, she adds, "Although policies vary from state to state, even county to county, we have come a long way in agencies taking a more accepting approach to issues of sexuality. At one time," Vilardo points out, "state and local agencies were absolutely building their policies on myths."
Addressing the Myths
According to Vilardo and Frabotta, many people still hold misconceptions about sexuality among developmentally disabled people, including the caregivers and parents of people with developmental disabilities. Vilardo points out that parents are not at fault for holding these misconceptions, since not long ago the medical establishment itself touted the theory that adults with developmental disabilities, who are often intellectually younger than they are chronologically, are "eternal children."
Frabotta emphatically states, "All these myths are not to be believed." She and Vilardo work each day to debunk them, considering themselves advocates as well as educators. The following are two of the myths that Frabotta and Vilardo are striving to debunk:
Myth 1: People with MRDD are not intelligent enough to understand sexual desire and activity.
"People with MRDD most certainly can understand the responsibility and consequences of sexual activity," Vilardo asserts. Sexuality educators have a responsibility to make sure that people with MRDD learn these responsibilities and consequences, according to the American Association on Mental Retardation (AAMR). The AAMR recommends that people with MRDD learn the basics, including "the physical and legal responsibilities of pregnancy" and an "awareness of STDs and how to avoid them." Otherwise, people with MRDD won't be considered informed enough, by state law, to engage in sexual activity, particularly intercourse.
Frabotta points out that people with MRDD are able to learn, and indeed, are learning all the time about many vital areas of life—not just sexuality. They are taught to follow rules for being at work, going out to dinner, and going to the grocery store. "We also teach consumers [people with MRDD] the concepts of 'public' and 'private' places," Frabotta continues, which plays a crucial role in sexuality education. They learn that it is only appropriate to get undressed or masturbate in private places, like their bedrooms. Frabotta further illustrates, "Most of my clients understand that you don't take your pants off by the frozen peas in the grocery."
While it is important to communicate the concepts of "public" and "private," it is also necessary for sexuality educators to explain concepts concretely, since people with MRDD think "very literally," Frabotta says. Vilardo shares a story about a residency that provided a motel room for two consumers, to show support for their decision to be intimate. Before the consumers left, their caregivers pointed to condoms on the table and told the couple to take and use them. Afterwards, the caregivers asked the couple if they had used the condoms. Yes, the couple said, they did exactly as instructed—they set them on the motel room table and left them there.
Because of stories like this and their own experiences, the sexuality educators make sure to use anatomically correct figures when illustrating how to put on condoms. "Bananas don't work," says Frabotta.
Myth 2: People with MRDD are not sexual or capable of intimate, emotional relationships.
"We know that people with MRDD are sexual and capable of intimate and emotional relationships because they are alive," Frabotta affirms. Like most people, people with MRDD engage in and are interested in sexual pleasure. Indeed, more often than not, a person with MRDD is referred to Frabotta because a caregiver discovers that the person is practicing masturbation.
And of course, people with MRDD have intimate, emotional relationships like everyone else. Vilardo recalls one man that participated in her educational group on dating. When he introduced himself, he said quietly, "I just lost my girlfriend. We were engaged. I have been very sad. Now, I am ready to try again but do not know how to begin finding someone like her." Vilardo points out that, unfortunately, many people with MRDD are "not given the respect nor the tools to help them grieve, heal and move on. This is, in my opinion, a part of sexuality education that needs to be addressed."
A Happy Ending?
Having been together two years, Stephanie and Michael are now finally living together. Frabotta credits this to "incredible amounts of planning and discussion with both families and teams of professionals." Unfortunately, they have lost some funding since moving in together, and when they do marry, their benefits will be cut back even further. The two are currently abstaining from intercourse until their wedding night. As Vilardo says, "The movement towards recognizing that all persons with MRDD are sexual beings from the moment they are born until the day they die is definitely here. It's just taking a long while for everyone to embrace that truth."
American Association on Mental Retardation (AAMR)
The ARC (formerly the Association of Retarded Citizens of the United States)
American Society of Sex Educators, Counselors, and Therapists
Sexuality Education of Children and Adolescents with Disabilities, American Academy of Pediatrics
Last reviewed September 2005 by Steven Bratman, MD
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