Stephanie Wallace leads a lively conversation with two experts in sexuality and disability on the latest episode of ICS’s Independence Radio.
An ICS member and founder of the LAID network, a media group that produces video and podcast series about “love and intimacy for the disabled,” Stephanie says she and her colleagues take a “kitchen table” approach to the subject of sexuality. “We get to talk to each other and educate each other, just by exchanging our experiences,” she says.
In this new episode, Stephanie gets to probe deeper into the subject with Dr. Mitchell Tepper, an Ivy League-trained sexologist who has incomplete quadriplegia at C6-7, and Dr. Danielle Sheypuk, a psychotherapist who was born with spinal-muscular atrophy type II. Drs. Tepper and Sheypuk will be speaking and leading sessions at the second “From Injury to Intimacy” consumer conference at Mt. Sinai’s Hess Center at 1470 Madison Avenue in Manhattan. ICS is one of several sponsors of the two-day conference on May 12 and 13.
The Forgotten ADL
“We’re going to talk about sexuality as the forgotten ADL—activity of daily living,” says Dr. Tepper, who hosted the previous conference in 2015 and talks with Stephanie about some of the differences in store. “We’ll talk about confidence building, humor, we’ll be delving into sexual esteem in dating and finding a mate…. On the second day, people were saying they wanted more nuts and bolts, so this is all around planning sexual activity from start to finish.”
Stephanie and her “sexpert” guests touch on many of these issues in the nearly fifty minute podcast. They begin with the personal—how each found their way to their chosen profession and what role their disabilities played in their choice.
Dr. Tepper describes being a sexually preoccupied 20-year-old in the hospital after a diving accident, struggling to understand the changes to his body wrought by his injury, without much help at all from the medical experts around him. “I was left on my own to figure things out,” he says, “and that I did! I probably took it to a different level, that I ended up with a Ph.D. in Human Sexuality.” After administering a national survey of people with spinal cord injuries while a Master’s candidate in Public Health at Yale and learning that only one-quarter received anything resembling useful post-injury sex education, Dr. Tepper decided he had found his “special purpose in life.” He went on to get his doctorate from the University of Pennsylvania.
Dr. Sheypuk, who earned her PhD from New York University, says her interest in the field stemmed from dissatisfaction with the way she felt able-bodied people viewed her. “My disability profoundly affects my dating life and my sexuality,” she says. “I grew up with family and friends not really talking about dating and sexuality. The covert message to me was, ‘that’s not for you. No one’s going to find you sexual because of your wheelchair.’ Or if someone does, it’s going to take someone really, really special. So that’s disappointing and disheartening and depressing, frankly….
“All through high school and college,” she says. “I was reading Vogue and In Style and Glamour and thinking in my head, well, I like to dress my body, too, and I like to wear makeup, and I feel sexual. I have crushes. I want to date boys. So why not me? Why am I exempt?”
Combatting Stereotypes and Silence
Dr. Sheypuk’s interest in combatting media stereotypes and just plain silence on the sex lives of people with disabilities led her to compete for and win the title Ms. Wheelchair New York. She was impressed because the contest criteria included both academic achievement and “glamorousness.” “That was actually the first time I ever heard glamour paired with disability,” she says. The title allowed her to open the door to talking publicly about these issues.
The conversation goes on to cover dating issues, like getting over the fear of rejection (“inoculating yourself,” Dr. Tepper calls it), why some people with disabilities find other disabled people “undatable,” how much to divulge about your disability to prospective partners on dating sites and on the first date. On the subject of sex, Stephanie asks about what role a personal assistant should play, if any at all, in her employer’s sex life; Dr. Sheypuk advises being clear about what might be expected in that area during the hiring process. Dr. Tepper discusses the nuances of using a sexual surrogate or getting involved with “devotees” (able-bodied people with a fetish for disability).
People with disabilities, their partners and professionals who work with people with spinal cord injuries will all find the episode thought-provoking. Any person with a spinal cord-related disability who is interested in the subjects discussed in the podcast will want to consider going to the conference on May 12-13. You can find more information about that here. ICS members, use the promo code ICS2017 when registering.