Over the last half of 2017, members of United Spinal’s New York City and Hudson Valley Chapters devoted hundreds of hours to planning and starring in a series of videos to educate people worldwide about sexuality and spinal cord injury.
Working hand-in-hand with Wheeling Forward, and under the leadership of professionals from Mount Sinai Rehabilitation Hospital in New York, the group created 16 well-produced, high-quality videos covering topics ranging from debunking myths about sex and SCI to fertility to sexual positions.
Those videos, along with videos chronicling two thoughtful sex and SCI seminars and a number of other sex and SCI-related resources, are now available for free in perpetuity at Sexuality After SCI, online at sexualitysci.org.
In its first year online, over 6,000 unique visitors from more than 116 countries visited the site. “I never even thought it would really get out of the United States,” says Angela Riccobono, the senior clinical psychologist at Mount Sinai, and the woman who envisioned the project. “There have been visitors from countries like Rwanda, Serbia, Russia, Croatia, Korea, Saudi Arabia, Iraq, Iran, places like that where they are so restrictive. … It just blew my mind that it had this global sort of outreach.”
Debbie Poli, a board member of the New York City chapter, credits Riccobono with the vision and follow through. “Without Angela, I don’t think the site would be as successful as it is,” says Poli. “She has tremendous insight and a lot of experience dealing with people, their emotions, and the recovery from spinal cord injury.”
A Need Arises
Riccobono has worked with thousands of people with spinal cord injuries as they’ve passed through Mount Sinai’s acclaimed model systems rehab unit over the last 25 years. While many aspects of SCI rehab have evolved thanks to new technologies and techniques, one area remained frustratingly stuck in time: sex after SCI.
Riccobono points to an old sex-ed video produced by Kessler Rehabilitation Center. “The video is horrible, but it was the only tape out there,” she says. “It doesn’t make you feel like going out and having sex.”
Riccobono says the aged videos are one of many signs that it is time to improve the way we talk about SCI and sex. “We have people with new injuries come in and we teach them a bowel routine, but we won’t talk about what it’s gonna be like when they go home and get in bed with their partner,” she says. “You have people who think their sex lives are over after their injuries, and they’re afraid to ask anything, they’re so uncomfortable. And then you have doctors who aren’t bringing sex up because they don’t know what to say, and it’s awkward and uncomfortable.”
From her experience running a weekly SCI support group, and a well-attended conference in 2015 called “From Injury to Intimacy,” Riccobono sensed the community would support a more robust program. In addition to hosting an expanded conference, she envisioned creating a lasting set of resources. She received a Nielsen grant to cover the costs and quickly got to work figuring out how to maximize its impact. “The idea behind the grant was not only to educate people with spinal cord injuries, but to do it in a way that’s never been done,” she says.
The hospital hosted two conferences on sex and SCI in the spring of 2017 — one for professionals and one for people with SCI. High turnout and enthusiastic responses reaffirmed Riccobono’s instinct that there was an unserved need for further sex education in the SCI community.
The Plan Comes Together
The original plan had been to record the conferences and post the videos online as a permanent resource, but everyone involved wanted more. “It just wasn’t enough,” says Riccobono. “I wanted to develop a website that people with spinal cord injuries and healthcare professionals could go to, and to make this a complete resource.”
Riccobono roped in leaders from New York’s SCI community and started planning what an educational video series should cover and what it should look like. “What was really important to us is that we have real people in an attractive setting — not in a clinic, or a hospital bed,” says Riccobono. “The people in these videos are real, attractive, sensual people. And I think it’s quite loving.”
A majority of the people featured in the videos came from the New York City and Hudson Valley Chapters and the film was produced by Remarque Creative, a production company run by the son and daughter of a longtime sponsor of the NYC chapter. Everyone involved worked hard to ensure the videos were factually correct, well-planned out and helpful. “We had everything on a story board and planned out because we knew we couldn’t just wing it,” says Poli. “It was too important and we’d put in too much time and effort.”
The project’s success has Riccobono excited about future endeavors to keep the momentum moving. Doctors, therapists, support groups and individuals have contacted her with various ideas and requests, and the videos and site are already being used as teaching tools in institutions around the country.
Poli makes sure to thank the many organizations and individuals that helped make the project a reality, but comes back to Riccobono. “The one thing that every single person that goes through Mount Sinai Rehab comes away with is that Angela is the person that changes everything for them. She’s just so caring and insightful.”
Now people all over the world can share in those same benefits.
Visit sexualitysci.org to find out more about Sexuality After SCI.
Also see: Guide to Online Dating