Hello and happy Friday! Here's a question from a reader:
Q: I’m a teen with spinal cord injury (paraplegic), and I am highly interested in sex and sexuality. I know that many people think it is a taboo, as we are asexual and don’t need physical intimacy (we do).
Could you please send me some resources where I could read about women with SCI and their sex life? I’ve heard many time that they’re not able to get a fulfilling sex and orgasm :( Also, I would be super thankful if you gave me contact info of some (sex) therapist who has experience with such cases and could help me with this individually.
A: Such an important question! I’ll start with the most important info first, and then get to some details to help educate everyone:
To begin with YES, people with spinal cord injury (SCI) have the same need for intimacy and connection as anyone else, and they deserve access to physical touch, erotic pleasure, and the joy of sexual connection if they want it. And YES, many folks with SCI can have orgasms, and if they don’t have fulfilling sex lives, it’s generally not because of their injury! More on that in a minute—including narratives from women with SCI about orgasm and sexual pleasure.
And for the second really important, practical question, NO I don’t personally know any sex therapists, physical therapists, or other helping professionals who specialize in sexual health for folks with SCI.
It’s true that many people with disabilities of all kinds have their sexual functioning dismissed by medical providers, therapists, and other helping professionals, as well as by friends and family and—maybe most important—potential sex partners, but resources for folks with, say cerebral palsy or connective tissue disorder are different from those with SCI or with developmental disabilities. People vary! I think folks with SCI deserve resources of their own.
Are you, person reading this, such a professional? Do you know someone who is? Are you someone with SCI who has worked with someone great? Do you run a website that connects professionals who do this work? Have you read helpful articles or books or heard a podcast that was helpful? Email me resources and I will create a list of them to include in this newsletter!
How sexual response is impacted by SCI will depend on the location and nature of the injury along the spine. Super-basic anatomy lesson for beginners—and by “super-basic,” I mean a mega-simplification of what any undergraduate psychology major will learn, but it’s what you need to know in order to understand how and why sexual response works even when parts of the spine don’t:
The spine is divided into four areas: the cervical (the neck and shoulders), thoracic (mid-back), lumbar (low back), and sacral (pelvis) regions. Each vertebra within each area is given a number from top to bottom—C1 is the topmost vertebra, down to C8, T1 to T12, L1 to L5, and S1 to S5. S5 sits right above the coccyx or “tailbone,” which is Co1.* If you know someone with SCI, they can probably tell you where in their spine their injury is, because its exact location tells us a lot about the kind of impact it has on sensation and motor ability. Each vertebra’s nerves are related to body parts around the level of the vertebra.
For example, a paraplegic, like the writer of this week’s question, probably has an injury somewhere in lumbar region or thoracic region, since these are the areas associated with the legs and pelvis. A quadriplegic with SCI will probably have an injury somewhere higher in the spinal column, since both their lower and upper limbs are involved.
BUT WAIT THERE’S MORE! One half of the spinal column includes only ascending nerves—that is, those sending sensory information up from the body to the brain, and the other half of the spinal column includes only descending nerves—those sending motor information down from the brain to all your other body parts.
So an injury to the ascending side of the spine will result in impacts on sensation, while injury to the descending side will result in impacts on mobility.
Also, nerves need to come into the spine from both side of the body, and they need to exit the spine to both sides of the body, which means some of the nerves need to cross over from one side to the other. That means it’s not unusual for a person with SCI to experience asymmetry in the motor and sensory impacts of their injury.
You see why the details of an injury make such a difference in sexual functioning? An injury that impacts a person’s mobility may or may not have an impact on sensation!
What kind of injury will impact sensory inputs and motor outputs for the genitals? Generally the lumbar and sacral levels. The best physiological cue that a woman’s orgasms are intact after injury is if the “sacral reflex arc” is intact – that is, if you touch the clitoris, the anus contracts. It’s like when someone taps your patellar tendon and you knee kicks out.
It’s also helpful if she was orgasmic before the injury, which not all women are. Our question asker is just in her teens, and, for example, in one study only about half of young women report experiencing orgasm before the age of 17. Among the 200 or so participants, all women age 28 or younger, one reported never having had an orgasm. Up to 77% (PDF) of women with SCI are reliably orgasmic, with therapy. So orgasm definitely happens! Better to learn to orgasm sooner rather than later! (Let me know if you’d like me to writer a primer on how to orgasm.)
There are actually a number of research studies on sexual functioning in women with SCI. My favorite is a 2001 study that asked participants to masturbate to orgasm in the laboratory, and then interviewed them about their masturbation technique. Both able-bodied and SCI women participated, so researchers could compare different women’s responses. I love this study so much I wrote a post about it several years ago, so for more details you can read that, but the essential conclusion was:
Orgasms feel the same, with or without SCI
Orgasm takes a little longer with SCI
Mode of stimulation varies more with SCI, and more often includes breasts and nipples, as well as direct stimulation of the uterus through the vagina (a clever trick, since the vagina is innervated directly to the brain via the 10th cranial nerve, which bypasses the spine altogether!)
I went looking for non-academic stories of people with SCI and their sexualities, and what I found was… vague, like this one and this one. But it kind of has to be, since people’s experience can be so influenced by details of their injury—which is why I hope readers will send me resources for people who work one-on-one with folks with SCI, to process the precise nature of a person’s injury.
One non-academic resource I found that I like is Sexuality after SCI, a video series produced by Mt Sinai Hospital. Caveat: these videos and many of the linked “additional resources” were hetero- and cisgender-centric—that is, no transgender, nonbinary, or genderqueer people seem to be included, and all the couples appeared straight. Dear Mt Sinai, LGBTQIA+ PEOPLE HAVE SPINAL CORD INJURIES TOO. And though people of color were represented as patients, the experts were overwhelmingly white. Oof. Not amazing. Props, though, for including a little bit of kinky sensation play, like riding crops!
So. People—including women people!—with SCI deserve and can experience great sex. Resources to support them exist. Those resources are not perfect—nothing is. People with SCI deserve more.
Can you help me find the kind of resources you would want to send to a curious and questioning young person in your life?
EMILY NAGOSKI is the award-winning author of the New York Times bestselling Come As You Are and The Come As You Are Workbook, and coauthor, with her sister, Amelia, of New York Times bestseller Burnout: The Secret to Unlocking the Stress Cycle. She earned an M.S. in counseling and a Ph.D. in health behavior, both from Indiana University, with clinical and research training at the Kinsey Institute. Now she combines sex education and stress education to teach women to live with confidence and joy inside their bodies. She lives in Massachusetts with two dogs, a cat, and a cartoonist.