Many people with spinal cord injury (SCI) say that one of the first questions they have post-injury is “Can I ever have sex again?” This is also one of the first questions they hear when the chance for romance first arises. Unfortunately, both sex and disability are still taboo subjects, and this leads to many stereotypes and myths—most persistently, that SCI is the end of sex.
Accurate sexuality information for people with disabilities and those without is the best way to break through this misinformation and make the topic less taboo. For a number of years ICS has collaborated with Mount Sinai Hospital and the National Spinal Cord Injury Association to offer this information.
One two-day conference attracted an overflow crowd of people in wheelchairs, including dozens of ICS members, their partners, and health care professionals from area SCI centers. The keynote speaker and master of ceremonies was noted disability sexologist Dr. Mitchell Tepper, author of a book on SCI and sex called Regain the Feeling: Secrets to Self-Discovery. If there was any one message Dr. Tepper hoped to convey it was this: Yes, there is sex after SCI, and it is most pleasurable between partners who love and care about each other.
Dr. Tepper comes to his knowledge of the subject not just from books (though his education at Yale and the University of Pennsylvania probably didn’t hurt). In 1982, he sustained a cervical SCI in a diving accident at Lake Mohegan in his home state of Connecticut that rendered him quadriplegic. During rehab at the Rusk Institute in New York City, one of his first concerns was, would he be able to have children? His doctor told him his chances were less than 10 percent.
“That was it,” Tepper writes in his book. “There was no acknowledgment of my sexual concerns, no follow-up questions, no discussion about other changes in sexual response I might experience…no offer of hope for the sexual future.”
During a lively panel discussion at the conference moderated by Dr. Angela Riccobono of Mt. Sinai, it became apparent that all these years later, physicians are still stingy with useful information about sex during the acute stages of SCI. Several panelists, male and female, said the extent of their formal sex education was a single pamphlet or a video handed to them that they were told to watch when they had a chance.
Dr. Riccobono noted that since the 1990s, the average hospital stay for an acute injury is four weeks—down from several months in the 1980s—and because there’s so much information to cover, sex gets short shrift. One member of the highly engaged audience said the near-absence of information on sex in rehab, unfortunately, reinforces the myth among the newly injured that SCI has rendered them sexless.
Myths and Facts
That is one of several common myths Dr. Tepper said he hoped to dispel. Many people with SCI believe that their disability makes them undesirable sexually, and this fear is often reinforced when their partner at the time of injury leaves or cheats.
Many believe sex is a luxury, and that they should focus on things that are more important. Too many women with SCI believe they cannot become pregnant, which is flatly false: SCI has no effect at all on a woman’s fertility.
Dr. Tepper and Mt. Sinai’s Dr. Jennifer Gomez shed light on medical aspects of sex after SCI, outlining the development of ideas about human sexuality since the revolutionary work of Masters and Johnson in the 1950s. Since then, sex researchers have moved from a mechanical idea of sex to one more centered in human psychology and sociology. Now researchers are finding that desire or attraction is as significant to sex as physical stimulation. This has implications for people with SCI because it opens up inquiry into an area that is untouched by the injury. It has also suggested “the non-goal directed” model of sexuality, in which sex is not just about attaining orgasm but also about a range of shared pleasures.
Dr. Gomez spoke about the neural pathways affected by SCI in men and women. It turns out they’re very similar. Anyone can become sexually aroused either in the brain, with thoughts or visual stimuli (psychogenic stimulation), or in the body, typically in the genitals (reflexogenic stimulation). Research has found that psychogenic stimulation is affected by injuries above those at T11-12 on the spinal cord. Reflexogenic stimulation is affected by injuries above S2 to S4. This means that there are two pathways for the two types of stimulation, one going up (reflexogenic) and the other going down the spinal cord (psychogenic).
The most common consequences of SCI for men are erectile dysfunction and problems with ejaculation. For women, there is commonly a brief interruption in menstruation post-injury, followed by exacerbations in pre-menstrual syndrome and cramping when the cycle resumes.
Dr. Gomez also discussed various treatments for sexual dysfunction caused by SCI, each with its own advantages and cautions. For men, the most well-known methods to treat erectile dysfunction are drugs like Viagra and Cialis; men can also use “tri-mix” injections, which can be self-administered like an insulin shot and various kinds of implanted prostheses. There is also a range of medical procedures to collect sperm that can be used for insemination.
Treatment for women can include vibrators and clitoral suction devices on the arousal side and several kinds of artificial insemination for fertility. Dr. Gomez noted that male sexuality has garnered most of the attention and research dollars, which may be due to the preponderance of men—always around 80 percent—among people with SCI.
Experiment and Explore
The conference audience was also treated to a series of sensual experiments based on the ancient Indian practices of yoga and tantra, led by Dr. Tepper and Rebecca Tarosian, an intimacy expert based in New York City. These included breathing with and without sound, an exercise in which partners put their palms together and tried to mirror each other’s motions, and a series of exercises with different degrees of touch.
Throughout the two-day conference, the twin themes of experiment and exploration were repeatedly raised. Several of those on the Thursday evening panel had talked about how, after or during rehab, they’d taken matters into their own hands, as it were, and approached their bodies as if for the first time. Many said this tack led them to unexpected discoveries about parts of their bodies they had never thought of as sexual.
Each attendee received a goody bag of sex toys, and then was placed into groups to compose erotic stories using items from their bags. The catch: No “sex” allowed. This restriction encouraged participants to use their imaginations and to expand the idea of what sex can be.
On the other side of the coin, sex for people with SCI can be dangerous or even deadly. Bad positions can cause fractures, skin breakdowns and bouts of dangerously high blood pressure called autonomic dysreflexia. So a final segment of the conference featured demonstrations, by Long Island-based physical therapist Lauren Varriale, of various assistive technologies to enable people with disabilities to have sex that is both pleasurable and safe. These included the Liberator ramp-wedge combo, which can be folded in various ways to make sex more comfortable and sex positions more creative; the Intimate Rider, a sort of erotic rocking chair; and various slings and straps that can make it easier to lift the body or legs.
By the end of the conference, the attendees were clearly having a lot of fun, though, perhaps, some of the laughter was more nervous than ribald. Dr. Tepper acknowledged that sex is a difficult subject for many people. It can cause embarrassment, discomfort or, worse, shame. This makes it especially hard for people with SCI to get the important information they need and want about sex during their rehab.
“My mission is to normalize sex,” Dr. Tepper said. ”I hope someday we can treat it as another activity of daily living.”