When you're insecure about your ability to "perform," the thought of being intimate can be daunting. But there are always ways to find your sexual groove.
[read part one of this article] - [read part two of this article] - [read part four of this article]
Get into the Groove
In previous parts of this series I discussed stereotypes stemming from popular culture's narrow definition of sexuality and about the myth that sexuality is connected with physical perfection. For those of us with disabilities who have been able to get beyond these rigid confines — not an easy task by any measure — what remains is perhaps our final rite of passage: logistics.
We may have lack of confidence in our ability to "perform" sexually. We may have questions with regard to our ability to find or stay with a partner because of sexuality issues; to have children; to feel sexual pleasure again; or to have an orgasm.
Issues such as physical positioning, bowel and bladder management, maintaining erections, and regaining lost desire become weighty, as, of course, does the thought of dating.
The entire process may seem daunting, so much so for some of us that we will opt to ignore the issue of sexuality and deny ourselves what can be our most inimitable, albeit fragile, expression of passion, caring, and love. Inimitable, in that we have the innate ability to express our sexuality in a myriad of ways uniquely our own. Fragile, because we subject ourselves to societal stereotyping and myths that tell us that we cannot be sexual.
Granted, disabilities can affect our ability to experience our sexuality according to certain cultural standards. But thankfully there are several ways for individuals with virtually any type of disability to be satisfied and to satisfy others, who may or may not have disabilities.
Time, Trust, Trying, and Talk
I never let anyone tell me that I couldn't find love," says Bob Mauro. Mauro, 59, who contracted polio as a child, uses an electric wheelchair and respirator and writes with determination about sexuality, relationships, and disability for his PeopleNet DisAbility DateNet web site. He has also published several books on the topic, including Real Crip Sex.
"Get the knowledge [from books, videos, Internet support groups, etc] you need and use it," he advises people with disabilities who may feel it is impossible to find love and a loving sexual relationship. "When you are born with a disability or find a new lover after you have become disabled, that pre-established sexual routine...is not yet there
It hasn't been established by you," says Mauro. He points out that engaging in sexual activity when you have a disability requires "the four T's: Time, Trust, Trying, and Talk."
All intimate relationships involve compromise and trust, and there are never any guarantees that the relationship will work. "You simply make love to your new partner in ways that you can with your disability," says Mauro.
Not everyone may be willing or able to adapt to your particular sexual abilities, but talk and trust "bonds a couple together." If you're in a relationship that puts you at odds with your sexual identity, "you should look elsewhere for someone to love and to love you," says Mauro
Focus on the Process, Not the Outcome
Sexual arousal is usually facilitated by desire, and certain factors that accompany disability such as stress, depression, fear, loss of sensation, low self-esteem, chronic pain, and drug use can prevent us from desiring sexual activity, leaving us with a form of performance anxiety.
Mitch Tepper — founder of the Sexual Health Network, an Internet source that offers information exclusively about sexuality following a serious illness or for those with disabilities — states: "When sex is goal-oriented, the mind starts to wander away from the erotic and toward distracting thoughts."
Tepper suggests that in order to have positive sexual experiences, we must focus on the process and not the outcome. Psychologists David Reed, who contributes to SexualHealth.com, says: "To experience sexual pleasure requires us to stop worrying about how we look or smell, or about making too much noise, or about whether we are going to have a bowel or bladder accident."
"It was a 'do or die' situation for me, after I became disabled and began to think about sex again," says Sai at his monthly peer-support group meetings at a New York City hospital.
Sai, a 38-year-old paraplegic, exudes a savvy sexual persona as he relates his 10-year saga from being "medicated" and emotionally devastated as a result of his spinal cord injury, to someone who enlightens his male peers about the importance of "self-acceptance and very honest communication" when pursuing sexual intimacy.
"Be honest about your needs and those aspects of your disability that they [women] might not know about," he says, mentioning leg bags, catheters, and differing mobility levels.
Sai stresses the importance of being comfortable with yourself first before "expecting someone else to accept you." His voice softens a bit when he mentions what would be perhaps unimaginable for most men. "It is a very emotionally painful thing to lose genital sensation—to see the penetration but not feel it."
But he eventually managed to redefine his sexual prowess in different ways. "Use what you have, engage in more foreplay, and," Sai says with added emphasis, "continually communicate" with your partner.
"You know, it's strange, but for the first time in our lives," he says about himself and his peers, "some of us are actually seeing what its like to have a healthy relationship," stressing that self-acceptance and honest interaction are the key factors.
Treatment Options
But what if you can't seem to find your sexual groove, as Mauro and Sai have? What if the struggles you have with your disability prevent you from finding and maintaining a sexual identity?
One approach is to examine the litany of options available in the way of sexual aides, support services, and treatments that include exercise, psychiatric support, and surgical implants.
For the purposes of this article, a comprehensive evaluation of the numerous services, products, and educational materials available would be too extensive to cover. Instead, the remainder of this piece will report on personal stories and some types of information available.
"It should be very clear to couples who want to engage in sexual intercourse that through the utilisation of the advances in urology, combined with the services of a well-trained sex therapist and psychologist, the goal of achieving a satisfying sex life after a disability can readily be obtained," states Dr. Natan Bar-Chama (pronounced "Bahama"), director of male reproductive medicine and surgery at The Mount Sinai Medical Centre in New York City.
Bar-Chama cites Viagra as the method of choice for his male patients who experience erectile difficulties after the onset of disability, and he reports that initial studies with the drug have proven effective for the vast majority of men with erectile dysfunction as a result of a disability.
Other treatment options for men include: handheld vacuum pumps to produce an erection; injection therapy, which utilises a drug that is injected into the part of the penis that fills with blood in order to cause an erection; penile implants, which are surgically implanted to provide a permanent, semi-erect penis; and inflatable or positional prostheses, which can be manually applied to achieve a full erection when desired.
The side effects of these treatments are minimal and a full medical examination should determine which treatment is appropriate for you. (In the final part of this Sex and Disability series I'll discuss the treatment options that are available for women.)
For men concerned about the ability to ejaculate, Bar-Chama points out that ejaculation and erection are two different neurological events. Sexual pleasure and/or orgasm are not dependent upon the ability to ejaculate.
However, infertility due to the inability to ejaculate and poor sperm quality are common problems for men with neurological disabilities. A possible solution is electroejacululation — a procedure that helps to produce sperm.
Experiment and Communicate
Depending on the level of neurological impairment related to disability, sexual response will be different for everyone. Again, communication becomes a crucial factor in maintaining satisfying sexual relationships.
"It's amazing that people don't know their own bodies," says Audrey Smerzler, a nurse clinician who conducts a monthly "Sex and Sexuality" class at Mount Sinai for inpatients with disabilities. Her class is a forum for newly injured patients to discuss changes in their bodies that relate to sexual function.
"We encourage experimentation," says Smerzler. She says that instead of focusing on "performance" or your ability to achieve an orgasm, touch exploration is a good way to experience sexual pleasure and intimacy.
Different kinds of touch can help locate nongenital parts of the body that, when stimulated, have the potential to produce heightened sexual sensations. Certain parts of the body may become acutely sensitive after an injury or disability and some individuals can reach orgasm by rubbing or stroking their abdomen, underarms, breasts, buttocks, neck, etc.
"Once we become familiar with our bodies and how they react to different types of stimulation, we can then communicate that to our partner," says Smerzler.
Julie, a 32-year-old quadriplegic, found some parts of her body to be "horrifically hypersensitive" to touch after the onset of her disability.
She and her husband found ways of maintaining a comfortable and erotic intimacy through "trial and error" and communication.
"I found that I needed a lot of foreplay which would actually desensitised my entire body enough for me to feel sexually comfortable," she says.
"Scented lotions and powders also helped me to adjust to an acceptable sensation level," she adds, explaining that these products help her body to relax and for her to feel more sensual.
There are also professionally trained surrogate partners — typically women — for those who have experienced sexual-response changes as a result of a disability and who are without a partner to work with. It's important to stress that surrogate partners are not paid sex workers, as some people may assume — they are professionals who work with their clients and a licensed supervising therapist in a therapeutic setting.
Surrogates can assist their clients by focussing on the physical and mental roots of a a range of challenges, including: inhibited desire or negative body image, anxiety around dating and intimacy, chronic pain that interferes with intercourse, and erection difficulties.
A notice on the Sexual Health Network site says, "Surrogates are not the solution merely for someone who cannot find a sexual partner — the goal of the relationship is to establish self-esteem through hands-on practice."
When you are trying to ease back into the dating scene, Bob Mauro's Web site is a good resource. Dateable, at www.dateable.org, is another one. Robert Watson, Dateable's executive director, says that his national dating agency is not only about helping his clients find one another, but also about serving as an "empowerment centre for individual with disabilities."
Watson, who has cerebral palsy (CP), often counsels his clients and helps to answer their "how-to" questions. "One of my clients with CP expressed his apprehension about becoming sexually intimate with a partner because of his spasticity," says Watson, explaining that with CP sometimes an individual's "touch can be hard" because of their erratic and cumbersome movements.
He advised him to use a feather in place of touch and offered suggestions about various positioning techniques that would help him to facilitate sexual intercourse. "I like them [clients] to feel good about themselves and in their ability to pursue acceptable dating possibilities," he says.
Try a New Position
As far as the actual sex act and techniques for positioning go, the options are as varied as the hundreds of people who write about them on disability Internet message boards (newmobility.com's message board called "Wheels, Relationships, and Sexuality") and Web sites such as SexualHealth.com. that offer professional solutions to questions from users.
Members of newmobility.com offer each other advise and elaborate on "great sex positions."
One posted response to a question about sexual techniques suggests the "T position" to a woman with paraplegia and her partner. "It's one person laying on his side and the woman laying on her back with her legs over [her partner's legs]." Another suggestion included a male wheelchair user and his female partner who would face him while sitting on the edge of a bed with one leg over each wheel.
But there are also messages from those who are unable to achieve sexual satisfaction or sustain intimacy with a partner.
"Is everyone having great sex but me?" one member laments.
She talks about her husband who became disabled and has since been unable to experience climax. "I realise it isn't possible like it was before but it really makes me feel like I'm failing in the bedroom," she says. She mentions that they are both tired of "the one position" and that their sex life "has gone all the way down the hill." Some of the responses to her message offered advice such as incorporating more spontaneity and oral sex into their lovemaking.
Obviously there are no easy solutions but one member pointed out that disability tends to bring to the surface a host of feelings between partners: "You care enough to try to do something about it, which is very good."