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  • Sex and Disabilities

    originally posted by leanne

    Sex and Disabilities


    There's nothing as unimaginative as popular culture when it comes to sex. If any group can break that stranglehold, it's the disability community.

    By Lisa Tarricone

    It's difficult for some of us to stare back at an airbrushed image of physical perfection, say in Playboy or muscle magazines, and not start contemplating deeper issues of self-worth. We keep telling ourselves that the quality of our lives and our attractiveness should have nothing to do with flawless skin and bodily virtue-but they seem to anyway.

    In the realm of disability, these issues are even more intensely felt. They go right to the heart of sexual self-esteem for those of us struggling to maintain visibility within a culture that imposes ruthless standards for attractiveness and desirability. The mandate, or so it would seem for individuals with disabilities, requires a sort of physical legitimacy in order to obtain love and acceptance, with a certain sexual model as the gateway to both.

    We are overwhelmed with television, magazine, and billboard ads using conventionally beautiful bodies to sell everything from jeans to taco chips. Sexual value has a certain cultural look that typically does not include people with disabilities.
    When was the last time you saw an attractive woman in a wheelchair selling Slim-Fast, or a Paralympic athlete posing for a Gap ad?
    As popular culture continues to promote-and blithely accept-images that connect sexuality to body perfection and beauty, the polarisation between those who have the ability to meet those standards and those who are unable to, will deepen.

    In his 1998 book Nothing About Us Without Us, James Charlton outlines several reasons why this trend is likely to continue: "The implication of the present image of the disabled body...leads inevitably to the notion that people with disabilities are asexual."

    Charlton claims that this is a compelling myth among non-disabled people due not only to the cultural fixation on body imagery but to the "medicalization" of disability as well. Disability is frequently linked with illness and dependency, and this often has an oppressive effect upon those who are struggling for sexual equity.

    There is so little, and at times inaccurate information available regarding the sexual potential of people with disabilities or the non-standard forms of sexuality that frequently come up in the community-this is yet another area in which people with disabilities have a lot to teach those without disabilities who define sexuality so narrowly.

    'Just Say No,' They Tell Us

    Jamie, a young woman in her late twenties from Port Chester, New York, is an outpatient at a local rehabilitation canted due to paraplegia from a recent spinal cord injury. "My orthopedist told me what to expect after my injury," she recalls. "He basically told me to concentrate on my upper body and ignore the 'wasted muscles' in my legs."

    When Jamie asked her physical therapist whether or not she would be able to have a sex life again, she was informed that it would probably never be satisfying and that she would have to find someone very "special" to understand her "condition."

    With comments like this from supposed experts, it's no wonder that individuals with disabilities often begin to confuse rigorously defined standards of acceptable body dimension, weight, and physical competence with the ability to be sexual. This becomes a discouraging and unrelenting process for those who don't measure up to the standard norms for physical acceptance.

    Jamie confessed to feelings of shame and fear when confronted with the possibility of sexual intimacy due to negative stereotypes that she internalised regarding her body. "It feels like I am not entitled to have sexual feelings anymore," she admits. "Not only do I feel unattractive, but it almost seems like my body has lost the capability to respond to sexual cues."

    The revised edition of the famous Kinsey Report, released in 1998, confirms this crucial link between body image and sexual self-esteem: "A positive body image is an important part of self-esteem, and having high self-esteem is vital to establishing intimacy with others.

    It is the belief that one is valuable and deserving of loving relationships." The same report cited the importance of "being secure enough to risk having a lover find out that you are not completely perfect."

    The salvageable message in this for a disabled population at odds with the misguided cultural connection of disability and sexlessness is in the notion of "security." "Intimacy has really less to do with sexual 'function' than many people assume," says disabled author Gary Karp.

    He argues that the more intimate levels of sexuality are driven by deep emotions-that it is "sincere loving contact," which ultimately heightens security. Plus, he adds, "Stronger feelings make for better sex."

    'Still Seriously Sexual'

    Karp and other advocates agree that everyone has the potential to be a sensual being regardless of any physical disability, and it is up to that individual to either choose to resist or affirm certain popular conceptions that attempt to stigmatise disability as undesirable.

    Consider Ellen Stohl, a quadriplegic, who posed on the cover of New Mobility magazine a few years back under the heading "Still Seriously Sexual." In that one cover shot, Stohl, her long legs clad in black fishnet stockings, straddled her wheelchair with a self-possessed posture that flies in the face of negative stereotypes linking sexuality and disability.

    "I'm a woman; I happen to be using a wheelchair, but I'm a woman first and foremost," she told a television interviewer in 1987.
    And what about men? Do they consider themselves men 'first and foremost' in the same way? "It depends," says Burt, a gay male who sustained a cervical spinal cord injury over 10 years ago.
    "I now look at different aspects of sexuality—I'm not solely fixated on my ability to have an erection." He maintains that his sexuality entails more of an erotic exploration into massage, passionate kissing, and various forms of touch.

    Although Burt still feels a great loss in not being able to achieve a "normal" orgasm, he says that his sexual partners have found his sexual energy and performance "as fulfilling as any other sexual encounter that they've experienced."

    He attributes his sexual performance and ability to accept gratification to feelings of self-confidence and empowerment gained through his creative writing. "Even though it is compromised [sexual] enjoyment, there is still a way to fuel your passion and connect as a sexual and sensual human being."

    He says he encounters his share of rejection; however, he points out that finding sexual partners is not as difficult as he once thought it would be. "There are so many people out there searching for a connection," he says. Disability or not, this is of course what it's all about.

    Making a Connection: Step One

    Concerns and feelings of frustration and anger about our sexuality are common with a disability. We may experience periods of loneliness and difficulty in trying to connect with a sexual/romantic partner.

    The next article in this series will profile several people in the disability community who are addressing these issues. We will hear from them about how they have taken steps to fully embrace themselves in order to become more intimate with others.

    Sexy Is as Sexy Thinks

    Repressive stereotypes, misconceptions, and lack of information often lead people with disabilities to second-guess their sexual potential and desirability. There are many voices in the disability community, however, that defy these stereotypes.

    By Lisa Tarricone

    Have you ever been interrupted by a stranger — while having dinner in a restaurant, waiting on a grocery line, shopping in a department store, crossing the street — who asked an exceptionally personal question about your sex life? Has anyone ever tapped you on the back while you're minding your own business, scanning the magazine rack at Borders Books, with a well-meaning inquiry about your erogenous zones?

    Well, probably never if you don't have a disability. But for those of us who do, questions asked by strangers, who may be curious about our disabilities and the sexual possibilities and contradictions that they pose, can be brutal. And if you begin to internalise queries such as "Do you have sensation?" or "How do you cope with not having sex?" the message implied can wreak havoc with our self-esteem and feelings of attractiveness.

    Fear of Unacceptability and Rejection

    Jamie, a 27-year-old woman who recently sustained a spinal cord injury, muses about the question she asked her boyfriend during the first 24 hours after the hiking accident that resulted in her paralysis. "I was lying on a gurney in the emergency room after my fall, and the nurses escorted my boyfriend in to see me," she recounts. "As he leaned over to kiss me, I asked him, 'Will you leave me?'". Her face winces when she adds, "I didn't ask him, 'Will I die?'"

    A lifetime of traditional repressive stereotypes, misconceptions, and lack of information caught up to Jamie that day when she second-guessed her sexual potential and desirability as a paralysed woman. "It was all important for me to maintain my sexual identity, and at that moment [in the emergency room], it became more pressing than the idea of death," she admits.

    Clearly the negative feelings that some of us with disabilities have about our bodies and our ability to pursue or maintain romantic involvements conform to societal standards and ideals that connect physical attractiveness to sex. But there are those within the disability community who are not resigned, and they have their own stories that defy these stereotypes.

    Dr. Richard Bruno, a physiatrist (a physician who specialises in physical medicine) with the Kessler Institute for Rehabilitation in New Jersey, writes about how to overcome fears of unacceptability and rejection.

    In a 1999 essay, "Sex and Polio Survivors," which was posted on www.spinewire.com, he refutes society's accepted standard—"If you're disabled, you're not attractive; If you're not attractive, you can't have sexual feelings"—with "sexy is as sexy thinks" logic.
    "What counts is how you feel about yourself, not how you look to others. If you're not acceptable to yourself, you won't be sexually available to or even intimate with others," he stresses.

    Stop Projecting Negative Feelings

    Bruno says the first step to intimacy is recognising and becoming more knowledgeable about your body in order to become more comfortable and accepting of your disability.

    If physical pain, muscle weakness, or fatigue accompanies your disability, interfering with sensual and sexual bodily sensations and awareness, try to counteract those conditions with hot baths, time in a whirlpool, massage, or aromatherapy before sexual activity.
    "Next," he says, "you need to identify your own negative feelings about yourself and stop projecting them into the heads of potential friends and lovers."

    Internet bulletin boards found on Web sites such as SourceHealth.com, Suite101.com, and HalfthePlanet.com (as well as on wemedia.com) provide a forum for the disability community to disseminate information about sexuality, discuss personal experiences, and offer and receive support.

    One woman who is paraplegic posts an entry about her re-entering the dating scene after the onset of her disability. She mentions that after a difficult start when she was "extremely uncomfortable with the new manifestation of her body," she began to shift her focus from needing to date (in order to be validated), to pursuing her own interests and passions, which is when men found her interesting and desirable.

    "This is what holds our attraction to others beyond physical beauty," she says. "Become engaged in the world," she advises. "Passionate people are...more approachable because they nearly always have something interesting to say."

    Peter, a 49-year-old man who is blind, rebukes some of the advice he has heard over the years from therapists and friends. "I was told to `lower my standards' when it came to dating," he says.
    He relates many "doomed relationships" as a result: He often dated women who he didn't find particularly appealing and stayed in those relationships too long out of fear and insecurity. "When I began to shift my perspective toward a feeling that I deserved to be with someone that I'm attracted to, I found more satisfying and mutual relationships."

    There is also the issue of choosing to not have sexual relations and "luxuriating" in the life of celibacy, as one unnamed writer stated in a recent article entitled "Confessions of a Sensuous Spinster" that appeared in New Mobility magazine. "I defy the stereotype," writes the anonymous "Miss Jane," who has a congenital disability (a type of muscle disease). "I honestly think I'm no more frustrated than most people.… In fact, I've largely devoted my life to pleasure."

    Although she acknowledges that her life of chastity is the result of cultural stereotypes and oppression that have made it difficult for her to readily engage in sexual relations with others, she still feels that it has nonetheless provided for a rich and complete life.
    "Maybe sex is a means of sublimating other desires, " says Miss Jane. "People may need sex because they lack pleasure, intimacy and love." She claims that intimacy and love are possible when one is a celibate and perhaps are even more valid—"I may love with complete freedom, with no fear of consequences."

    "I Had to Start with Me"

    For some though, it may be those consequences that deepen intimacy. Jim, a 40-something former marathon runner, contracted MS after he'd been married eight years. "When we got the diagnosis, my wife left the room to vomit," he recalls. During the ensuing years when the symptoms of his MS became more manifest, he and his wife "took their vows to heart."

    "Some people jump ship when they find out that their partner has contracted a challenging disease," says Jim. "Most often when people are in a committed relationship or a marriage, areas of commonality are established."

    When one partner becomes sick or develops a debilitating disease such as MS, that commonality becomes threatened, he points out. "It was debilitating mentally for my wife to watch her life's partner not being able to walk across the room," he says.

    As the MS began to diminish his physical ability, Jim confessed to emotions steeped in "personal shame" and increased feelings of "not being whole as a man."

    Then there was the role reversal. "My wife became the driver and the one who carried in the groceries." He mentions a turning point in his marriage and in himself, signalled by high frustration and anger. It was a time when his "blood began to boil," but it was followed by a rather sudden realisation that in order for things to improve, "It had to start with me."

    Jim began to realise that it was more his projected feelings of low self-worth than his disability, that impacted his wife negatively and inspired episodes of rage and shame within himself.
    "I had to glean out the positive and give myself points for past accomplishments and present efforts." It was during this healing process that he regained his sexual self-esteem and sense of "wholeness."

    This, together with their strong religious faith and love, provided for a "tighter fusion" of their marriage, he says.
    Jim, whose marriage is still going strong 20 years after his diagnosis, says that making love to his wife has changed, evolving naturally as an expression of love, intense passion, and varied levels of emotion. "It's about getting close—you communicate in different ways to stimulate each other, " he contends. "Intimacy, of course, still exists with a disability."

    Compromise and Get Over It

    Tom, who became disabled due to a stroke several years ago, "savours each delicious second with his partner." Although he isn't able to "shower together with his lover anymore," he testifies to having satisfying sex. "I have a positive self-image and sex is not a problem, " he says, referring to his "whole body as a sex organ."
    Tom and his partner have explored sexual possibilities together and claim they "have learned ways of doing it that work and work very well." He says that they are not free of conflicts though, and that they have come up with different ways to address the difficult issues that they encounter with the disability.

    He and his partner attend stroke support-group meetings together and know when to take time apart from each other to pursue personal interests. Tom says that the strategies that he and his lover embrace as a couple are universal: "Sometimes it takes compromise and sometimes it just takes getting over it."

    Sex: A Matter of Logistics

    But the question on the lips of some of who are outside the realm of a caring partnership with someone, or who are still experimenting with dating and low sexual self-esteem, is one of logistics.

    Sexual issues including the inability to maintain or get an erection, muscle spasms, neurogenic bladder issues, personal-care attendants, the lack or loss of sensation and the ability to have an orgasm, hyperreflexia or high blood pressure during intercourse, medications, pregnancy, techniques, and positioning during sex will be addressed in the next article in this series.
    The cultural pressure for sex to be spontaneous is yet another repressive standard that we need to recognise in order to reclaim sexual self-esteem and feelings of empowerment.

    Get into the Groove

    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.

    By Lisa Tarricone

    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 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 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."

    Equal but Separate

    Performance anxiety, pain, discomfort, low self-esteem, trauma…sex isn't always a bed of roses for women, disabled or not. But some women are getting even, not mad.

    BY LISA TARRICONE

    "I remember one afternoon while at a mall, about two years after my injury, that I had this revelation of sorts—that my sex life was over. I was sitting [in my wheelchair] outside a clothing store and a couple walked by. His hand was on her hip and she was nearly squeezing her body into his as they walked, holding onto one another and smiling.

    It was at that moment that I had these intermittent feelings of panic and extreme sadness—knowing that I would never be sexually desired or have the chance to feel sexual fulfillment and love with someone." - Anne, a 37-year-old woman with paraplegia.

    In part three of this series I spoke about "finding your sexual groove." Experimenting with new positions and learning how to experience sexual pleasure in different ways may certainly help women with disabilities find that groove.

    But for women like Anne, the ability to "perform" sexually often seems to play a secondary role when it comes to self-esteem and maintaining a sexual identity.

    According to Dr. Margaret Nosek, a professor in the department of physical medicine and rehabilitation at Baylor College of Medicine in Houston, men are usually impacted differently by disability when it comes to sexual involvement.

    She claims that for men it's more about the actual sex act. "If they are able to function sexually, it really doesn't matter as much to them what they look like. For women it's the exact opposite."

    The Facts: The Thrill May be Gone

    Noseck's theory may or may not apply to all women, but one thing is clear: Physical factors related to disability can impact a woman's sexual function and desire. Many women with physical disabilities such as spinal-cord injuries and multiple sclerosis (MS), experience chronic pain, lack of genital sensation/lubrication, and fatigue.
    Often, due to sensation deficits, women are unable to experience orgasm as they once did, or they experience physiological reactions such as tingling in their lower extremities, muscle spasms, or hypersensitivity in specific parts of their bodies.

    Dr. Marca Sipski, an associate professor of clinical neurological surgery at the University of Miami School of Medicine, has been conducting studies, which began in 1993, on sexual response among women with spinal cord injuries.

    "One outcome we found is that orgasm is a reflex of the autonomic nervous system that facilitates and inhibits cerebral input," she relates. In other words, orgasm is an internally caused reflex in much the same way bowel and bladder function is.

    The good news with this is that even though a woman may not experience normal sensation, she may still achieve orgasm through intense manual, genital stimulation.

    Sipski suggests that women with sensation deficits should not give up and assume that they can no longer attain heightened sexual pleasure or orgasms, but should instead pursue not only aggressive genital stimulation, but also exploratory touch with other parts of their bodies such as their breasts, for a period of time in order to get desired results.

    "We also found that women who were more educated about sex and who had more of a willingness to experiment with different techniques and devices were also able to achieve orgasm [more readily]," she says.

    Sipski mentions that early studies showed that the drug Viagra, which is now commonly used to address erectile difficulties in men, can be effective in women with sexual dysfunction.

    Although a recent study reported that Viagra might not be effective in women, Sipski's findings have shown that the drug helped to improve their subjective sexual arousal. "The women were significantly aroused in their brains," she says, noting that she is looking forward to a larger study in the future.

    A recent FDA-approved device called the Eros CTD may also help women achieve orgasm more effectively. Eros CTD, made by Urometrics, works by pumping blood into the genital area. Some of the comments from women who tested the product confirmed that the device helped them feel more sexually satisfied and achieve orgasm better, while all of the women said that they had improved sensation with its use.
    Women who experience chronic pain that interferes with their desire to engage in sexual activity can try body massage, using warm oil, hot tubs, saunas, steam rooms, and tanning beds to ease muscle and nerve pain and to help loosen joints.

    They may also find it helpful to experiment with sexual positions and activities that minimize painful intercourse; having a partner stimulate genitals orally; scheduling sexual activities when symptoms are least problematic; or spending time in other erotic and intimate activities that do not involve intercourse or orgasm.
    Coming to Terms with a "Severely Altered Appearance"
    A recent study released by the Center for Research on Women with Disabilities (CROWD) concludes that women with disabilities face a greater potential for rejection when they attempt to engage in sexual and intimate relationships because of their "severely altered appearance."

    Some women give up, adopting, the study says, "the societal view that they are no longer eligible for dating, that they have become asexual and should no longer expect anyone to be attracted to them."
    Women with congenital disabilities such as cerebral palsy and spinal bifada may encounter even more difficulty in trying to establish a sense of sexual self-esteem: Often they are told by overprotective parents not to expect to date or get married in order to avoid the possibility of exploitative relationships or unwanted pregnancies.
    Jamie, a 27-year-old woman with paraplegia who appeared in the first two articles of this series, recounts her "metamorphosis" into a new class of female after her spinal-cord injury. "The message began to take hold as the firmness left the muscles in my legs and hips.

    I couldn't seem to get past the imperfection of my body which translated back to me as undesirable, incapable, flawed, hopeless. Beating paralysis has become a cultural obligation for me to win back the life of beauty, movement, and social acceptance."

    Jamie freely admits that she has not moved to the next step toward sexual self-discovery and enhanced self-esteem—surrender. By this is meant the surrender that comes from taking risks, opening up honest channels of communication with romantic and sexual partners, and sharing information with peers that helps women address their sexual self-esteem issues when dealing with a disability, says Nosek.

    On one Internet bulletin board a woman recently expressed how vulnerable she feels during sex and without her clothes. "I'm vulnerable in a way I could never have imagined," she says, yet she says she has found that sex can still be gratifying just the same. "I'm so much more than this body I'm living with."

    According to Nosek, woman with disabilities are the "litmus test" for overcoming society's standards that "link how you look with sexual credibility." It is ultimately how a woman views herself that is going to determine her sexual viability, whether she has a "small scar that only she can see" or something more obvious as a physical disability.

    For some women the small scar can impact their sexual self-esteem in much the same way as a spinal cord injury can for someone else, Nosek says.

    Interestingly, despite the stereotype that women with disability are asexual, sexually undesirable and dependent, CROWD documented findings that "the majority of women with disabilities were triumphant over these assaults.

    In addition, many women reported "eventually forming a long-term relationship with a partner who accepted their disability while cherishing the unique characteristics they had to offer."
    Mental Disabilities: Another Story Altogether

    CROWD's findings are definitely heartening to women with physical disabilities. However, they don't necessarily apply to those with mental disabilities, who often experience depression, dissociative disorder and sexual addictions as a result of sexual abuse or incest.

    "Sex takes on a means to a deeper level of survival for me," says Sarah, a 40-year-old woman with depressive disorder stemming from childhood sexual trauma. She talks about instances of sexual abuse as a child that made her feel unsafe, not taken care of, and devalued.

    "I learned to be sexually objectified in order to be wanted and desired by men," Sarah says. She refers to her "sexual power," instead of intimacy and emotional connection, as the "glue" in her romantic relationships. "A man must always value me sexually above everything else," she explains.

    "Women who have experienced sexual trauma feel betrayed by their own bodies," argues Jill Cannon, a clinical social worker who specializes in sexual abuse and addictions. She works with women who enter the mental-health system later in life, when they have developed symptoms such as panic disorder and depression due to earlier experiences of sexual trauma.

    But "an across the aboard experience for all of them is sexual shame," Cannon says, causing "trust and communication problems with partners." Cannon also mentions that women who have experienced sexual abuse often have problems having orgasms. She points out that "orgasm is surrender on the deepest level," which triggers feelings of victimization in women with sexual-trauma issues.
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