Sexual Pleasure: But What About Me?

As a sexuality and disability researcher, I have long read about the ability to attain and maintain an erection, to ejaculate, to impregnate, to menstruate, to conceive, to carry a child to term, to deliver, to breast feed and to maintain a marriage. What strikes me is the total absence of material about the ability of those of us with spinal cord injuries to experience sexual pleasure.
Even the most recent articles I've read that discuss the ability of women with spinal cord injury to experience orgasm focus on the purely physical aspects, not overall sexual pleasure. For the most part, the literature and research take a medical point of view and focus on reproduction, not the importance of sexual pleasure in our lives.
For example, I was involved in research at Rutgers University in which women with spinal cord injuries shared their initial experience of sexuality following injury. The women equated the loss of feeling in their genitals after injury with loss of sexuality and loss of potential for sexual pleasure. But no medical professionals asked the women about this sense of lost sexuality or discussed it with them. As a result, we lost the opportunity to gain insight from the study participants and to help them regain a sense of themselves as sexual people during their formal rehabilitation process. That was a waste.
It's Better to Give ...
Through experience and exploration, most of us with SCI learn that we can still please a partner. We sometimes also learn that our own ability to receive sexual pleasure is diminished, leading us to accept--by default--the old adage that "It's better to give than to receive." This may be at least partially true for some of us--but the possibility and benefits of receiving sexual pleasure still need to be pursued. Reciprocal sexual pleasure is seldom impossible.
About half of spinal cord injury survivors can experience orgasm and this ability is not strongly related to the level or completeness of injury. Some of us, for that matter, find sex even better than before injury. Which of us will be so fortunate? There is growing evidence that sexual knowledge, sexual self-esteem, and time since injury are related to the ability to experience sexual pleasure and orgasm. It seems that knowledge is power, power fuels self-esteem, and self-esteem opens the door to sexual pleasure.
With this model in mind, where do we start? It's important to learn as much about sexual function and response as possible. Psychologically, how we think and feel affects our level of desire. Physiologically, sexual arousal is associated with faster breathing and heart rate, and increased blood flow, muscle tension and sensation in erogenous zones like the lips, ears, neck and breasts. These are the outward indicators of sexual pleasure.
We can learn to focus on pleasurable feelings, let our breath flow freely and stimulate our bodies in any way that feels good. Groan, moan, suck, bite, pull or do whatever else you feel like doing. Orgasmic sex requires tuning into our sensations--in the moment--and forgetting about quad bellies, atrophy, catheters and making embarrassing sounds. It means not worrying about performing up to some imagined standard. And it means forgetting what we learned in the past about what is and isn't pleasurable.
What's right is what works now. At one time, gentle licking of the ear may be an irritation. At another, it may send us into ecstasy. When we are in tune with our bodies and open to pleasure we may find it in the strangest places.
.... and Receive
Sure, you might be saying, but what about the lost sensation in my penis or clitoris, vulva or vagina? Many of us still enjoy genital stimulation with little or no sensation, and many others choose to leave it out of sex play. In our research at Rutgers, three women with complete spinal cord injuries and no feeling in their genitals nevertheless experienced orgasm with genital stimulation. Others, in a study at Kessler Institute for Rehabilitation, could achieve orgasm with a vibrator. For yet others, stimulation of only non-genital areas works well.
Sexual pleasure and orgasm need not depend on genital function. If we take our time, play and explore, we may discover that sometimes it is better to receive.