Feature

As a teenager, Danielle Sheypuk, PhD, was stung when relatives would ask her younger sister, "So, are you dating anyone? Who's your boyfriend?" Nobody asked Sheypuk those questions. She was in a wheelchair because of spinal muscular atrophy type 2. The implicit message was clear: "Dating and relationships weren't going to be in the cards for someone like me," she recalls.

Today, Sheypuk is a psychologist in private practice in New York who specializes in dating and intimacy issues. About half of her clients have disabilities. They talk with her about their relationship and sexuality concerns, including how tough it is to meet people and to deal with such invasive comments as "Can you have sex?" or "When you are out of your wheelchair, are you helpless?" They also seek her guidance on the practical hurdles. Perhaps most of all, they seek to learn how to still the inner voices that have internalized messages about their unsuitability as sex partners. "The misconceptions and stigmas are numerous, and they are profound and they are hurtful," Sheypuk says. People with disabilities get the message that "because your body is so different, it's going to be hard to find someone to ‘look past those issues' and see you for who you really are." As a result, Sheypuk says, many of her clients—who are confident in other areas of their lives—have self-esteem that's "in the gutter" when it comes to sexuality and relationships.

Facing stereotypes

The greatest challenge that people with disabilities experience when it comes to sex is society's beliefs about sexuality and sexual relationships, notions such as, "Why would anybody choose to be with somebody with a disability when they could have a nondisabled person?" says Linda Mona, PhD, a psychologist with a disability who practices at the VA Long Beach Healthcare System.

People with physical disabilities fight hurtful stereotypes when looking for relationship partners Research documents such ­stereotypes. A study by Michelle R. Nario-Redmond, PhD, professor of psychology at Hiram College in Ohio, surveyed 50 people with disabilities and 47 people without disabilities about stereotypes related to disability. Both groups of participants reported that the common view was that people with disabilities are asexual and unattractive (British Journal of Social Psychology, Vol. 49, No. 3, 2010). Another study led by University of Alberta researcher Shaniff Esmail, PhD, surveyed 32 people, including service providers, people with visible and invisible disabilities and the general public about their attitudes toward sexuality and disability. Again, the predominant view was that people with disabilities were asexual (Disability and Rehabilitation, Vol. 32, No. 14, 2010).

Sometimes stigma toward people with disabilities for being sexual can be subtly expressed, says Erin Andrews, PsyD, a supervisory psychologist at Central Texas Veterans Health Care System, who is an amputee and mother of two whose husband is nondisabled. She finds it frustrating when people shower him with praise for marrying her. "People will say to him, ‘You're such a good man, you're so amazing,'" she says. The implication is that "he's a hero or some sort of inspiration because he's willing to put the traditional standards of beauty and sexuality aside to be with me. It's almost taboo to admit that people with disabilities can be sexually attractive."

These attitudes can undermine the lives of people with disabilities in many ways, resulting not only in lower sexual self-esteem and satisfaction, but less access to medical information and sexual health care, as well as more difficulty finding partners and starting families.

And contrary to the stereotypes, research shows that people with disabilities have the same levels of sexual desire as people without disabilities, and many have positive sexual relationships. However, depending on when the disability occurred and how severe it is, some have less sex and more sexual dissatisfaction. A study by Marita McCabe, PhD, and George Taleporos, PhD, of the School of Psychology at Deakin University in Australia, for example, found that people with disabilities who had experienced their disability longer had significantly more positive feelings about their sexuality. The study also found that people with more severe disabilities had less sex and were less satisfied than people with milder or no impairments (Archives of Sexual Behavior, Vol. 32, No. 4, 2003).

Finding partners

Of course, for some people with a disability, finding a partner is the first challenge. "What most people want is a relationship," says Sigmund Hough, PhD, a certified sex therapist in private practice and a clinical rehabilitation neuropsychologist at the Spinal Cord Injury Service, VA Boston Healthcare System. When people first come to him for counseling, they don't usually ask about sex right off the bat, he says. What they are looking for is a meaningful connection with another person.

Nowadays, many people look for those connections online. Technology has "vastly improved the lives of people with disabilities in many ways," says Sheypuk. Not only can they get counseling online (she and other therapists do sessions via Skype), but online dating helps people connect more easily than in the past.

This ease of access does, however, come with downsides, such as deciding when and how to disclose a disability, especially if it's invisible. "Trying to figure out how you talk about disability in the initial stages of meeting and dating is complicated," says Mona. "Do you disclose or not disclose? If you disclose, will someone still contact you? If you don't disclose until you see someone and then it's, ‘Oh, by the way, I'm in a wheelchair,' that's not always the best foot to start off on."

Once an online connection is made, another hurdle is arranging transportation and meeting in person, which, depending on the disability and where one lives, can present challenges, points out Hough. Safety is an additional concern, given that people with disabilities are at a higher risk of sexual assault and physical abuse, and are potentially more vulnerable (Lancet, Vol. 379, No. 9826, 2012). Sheypuk helps clients come up with contingency plans, such as having a home attendant in another room.

Nonheterosexual people with disabilities have additional concerns when it comes to sexuality. A review by California psychologists Sarah Fraley, PhD, Linda Mona, PhD, and Peter Theodore, PhD, points out that people who are lesbian, gay or bisexual are a "double minority," experiencing another set of stigmas in addition to those attached to disability. For example, ideals exist for both gay women and men valuing "strong, active, athletic body types" that may not fit most people with disabilities, while sex-ed materials or medical care may be geared to the needs and practices of heterosexuals, among other challenges (Sexuality Research & Social Policy, Vol. 4, No. 1, 2007).

A study of "sexual minority" women led by Michele Eliason, PhD, at San Francisco State University found that they reported a poorer quality of life than their nondisabled sexual-minority peers, with more PTSD and anxiety disorders, as well as more experiences of discrimination (LGBT Health, Vol. 2, No. 2 2015).

Andrew Gurza, a gay blogger, podcaster ("Disability After Dark") and disability rights consultant in Canada who has cerebral palsy, says there is a lack of awareness about disability in the LGBTQ community.

"The LGBT community is very ability-focused and there's not a lot of disability representation," Gurza says. People in this community aren't used to seeing people with disabilities in general, let alone "someone with a disability being up front around what they want sexually and romantically. There's a lot of fear around being queer and disabled."

One solution, he says, is for there to be more discussion of "the lived experience" of ­having a disability—the day-to-day challenges, like arranging transportation or using attendants to help with bathroom visits—that can ease the fear of the unknown that people without disabilities may have.

Gurza also echoes one of the findings of Fraley's paper—that there is an overemphasis on hard-body looks that can leave many with disabilities invisible.

"There's a big obsession with health and fitness, with going to the gym and having a particular body esthetic," he says.

Where's my sex ed?

In the late 1990s, Margaret Nosek, PhD, executive director of the Center for Research on Women with Disabilities at Baylor Medical School, surveyed 475 U.S. women with physical disabilities and found that 41 percent believed they didn't have adequate information about how their disability affected their sexual functioning (Sexuality and Disability, Vol. 19, No. 1, 2001).

They still don't, according to psychologists who work with this population. Among them is Alette Coble-Temple, PsyD, a psychology professor at John F. Kennedy University who has cerebral palsy and who counseled a married couple who were in wheelchairs. The couple saw a photo on Coble-Temple's desk of her with her family, including her daughter. They asked her how she was able to have a child, Coble-Temple says. "No other medical professional had ever talked to them about intimacy, about how to navigate sex with a disability, about the adaptations and adaptive baby-care equipment that are available," she says. "They looked at me completely shocked."

Coble-Temple had run into inadequate information about sex before. As an undergraduate, she visited a doctor to get birth control. The doctor never discussed sex with her and assumed she wanted it to control her menstrual cycle. Later, Coble-Temple found out her seizure medication could have made her birth control pills inactive. Because her doctor had not considered her a sexual being, she ran the risk of an unplanned pregnancy.

"That was my wake-up call," she says. She went on to write her dissertation in 1998 on the topic of sexuality and disability, finding that when people with disabilities requested information about sex or reproductive health, "they were met with opposition and shock."

Sheypuk says that many of her female clients report "horrific" first experiences with gynecologists who are not versed in seeing patients with physical disabilities. For example, if the gynecologist is unable to do a complete exam due to reports of pain and/or tightness by the patient, the gynecologist may only do a bare-bones exam and not refer the patient for a more complete follow-up. There may be an assumption that the patient is not going to have sex anyway, so there's no need to put her through such an exam. Sheypuk refers clients to NYU's Initiative for Women with Disabilities, where they have a gynecologist on site who only sees women with physical disabilities.

The lack of sex education continues even though there is a hunger for information about how to achieve intimacy, says Mitchell Tepper, PhD, a certified sexuality educator and counselor who works with people with disabilities and who was paralyzed in a diving accident in 1982. Tepper helped the Department of Veterans Affairs implement the "PAIRS" couple curriculum and adapt it for vets, as well as train staff at Walter Reed Army Medical Center about sexual health. He also is working on a documentary about veterans who have restored intimacy after injuries, called "Making Love After Making War." Through the film, Tepper hopes to give people with disabilities a vision of hope and to educate health professionals and society overall. "It's a film really about sexuality and disability, and it will show people a different way to love and be in love," he says.

Redefining sex

These different ways to love can involve rethinking traditional sexual scripts and discarding the idea of sexual intercourse as the only way to make love, say psychologists in the field. "The most beautiful intimacy I have seen was between two clients who physically weren't able to engage in typical heterosexual intercourse," says Coble-Temple. But, she says, "They could look into each others' eyes with a level of passion and intimacy that was 100 percent stronger than what I see in the average couple."

While much remains to be done to educate people about sexuality and disability, awareness is growing, says Tepper, especially as younger people with disabilities use social media to connect and spread information. "There's a greater awareness and greater amount of advocacy and projects among people with disabilities worldwide than there was 20 years ago."

To watch "Every Body: Glamour, Dateability, Sexuality and Disability," a TEDx Talk by Dr. Danielle Sheypuk, go to www.youtube.com/watch?v=7PwvGfs6Pok.

Resources

American Association of Sexuality Educators, Counselors and Therapists
www.aasect.org

PleasureABLE: Sexual Device Manual for Persons With Disabilities
Kassioukov, A., MacHattie, E., Naphtali, K., Miller, W.C., & Elliott, S., 2010

Sexuality and Disability in Adolescents
Holland-Hall, C., & Quint, E.H., 2017

Sexual Health Care for People With Physical Disabilities
Rowen, T.S., Stein, S., & Tepper, M., Journal of Sexual Medicine, 2015