The Ultimate Guide to Sex and Disability (18 page)

When energy is low, you may be feeling sexual yet not notice. The cues may be much more subtle. You have to learn what these signals are, and to notice them when they occur. You then decide whether to act on them.

In addition to planning sex for times when you expect to have more energy, another helpful technique is the "stop and start." Start whatever sexual activity you are interested in, and take a break when you notice that you are getting tired. This break can be a complete rest, or can involve a less-strenuous activity. Start again when you have gathered some energy. This pacing can also introduce more variety into sex play and teasingly delay orgasm.

Sometimes people worry that their low energy is a sign that having sex would be damaging to them. Many people with heart disease hold this belief. If you can walk up two flights of stairs without chest pain, then you can safely have sex and should have enough energy to do so. An exercise program (with the guidance of a physical therapist or physician) can increase stamina and decrease both chest pain and shortness of

breath during sex. Either of these symptoms, or having palpitations, is a signal to stop exerting yourself. Sexual activities that require little or no exertion, with you positioned on your side or back, lessen the chance of symptoms. Go slow in the beginning to minimize stress and fear of a heart attack.

Any illness that is associated with anemia can lead to decreased energy and interest in sex.

When I was having dialysis three days a week, I would sometimes feel like having sex the night after a dialysis day but never the next day. Now that I am dialysed six nights a week, I find my interest is a lot higher, but then timing is a problem. Sometimes I get unhooked from everything in the morning and then we "do it." I have also had problems keeping my erections.

Where to Have Sex

Finding a place to privately have sex can be a challenge, as discussed at length in chapter 4. People who have their own house or apartment, or whose partners do, have more choice about where to have sex. Those of us who live in group or shared accommodations have decreased options, and those in institutional settings have very limited choice. Flirting and verbal play can take place in public settings without anyone knowing what is going on, and sometimes spaces that are unused at certain times of the day can be utilized, like laundry rooms or service elevators.

People have sex in many places other than in bed. Floors, sofas, chairs, bathtubs, parks, and cars have all been turned into lovebirds' nests. Some of the more romantic-sounding settings, though, lose their charm when actually tried—sex on the beach sounds great until you get sand in your vagina.

Accessible toilets are FAB.... One can get pushed in there by a lover and everyone thinks "Isn't that sad, someone needs to wipe their bum," and you can shag away in private and then come out

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and no one has a clue as to what really went on! It's liberating and definitely one of the few perks of being a wheelchair user!

Fantasy

You might be surprised to learn that fantasy is not just a solitary experience. People incorporate fantasy into their sexual relationships first by having fantasies, then by sharing and creating them together (we talk more about this in chapter 11). People may have fantasies about things they like to do, things they would like to do but can't, and things that excite them even though they wouldn't want to try them.

One of our fantasies involves going to bed with another couple. We both believe that it is important not to feel guilty when engaged in this form of sexual play Since I am disabled and my wife is able body we usually like to pretend that the other couple would be complementary to our own situation: meaning that the woman is a paraplegic, like me, and the male is able body like my wife. This fantasy allows us to think of other sexual possibilities that the limitations of our own bodies will not allow us to experience. In my own particular case, it allows me to compensate for my inability to reach an orgasm and ejaculate. I can then contemplate sexual intercourse in a more natural and a more spontaneous fashion, where there is arousal, erection, penetration, and ejaculation. This fantasy play lets me feel like I am a more complete sexual person. And I feel content with my sexuality. But it took me a long time to reach this point of contentment.

I tell my partner that I would like to tell her a bedtime story, and then I tell her a fantasy that involves the two of us. I do it like a story, so I start with "Once upon a time." Sometime HI use "I" and "we," so it would be like, "I was on my way home and I saw some really sexy underwear in a store window. I told the paratransit driver that I wanted to stop and buy some and he stopped and said

to take my time..." (The great thing about fantasy is that you can make things happen that would never occur in real life!). Sometimes I use our names, instead, "joe bought the red lacy thong and slipped it into his pocket. When he got home, he said to Lily 7 have a little surprise for you in my pocket, but you have to guess what it is/ " A couple of minutes into the fantasy she will start to masturbate or to touch me, and I just keep going on with the story for as long as I can.

One night we got a bit drunk and Susie dared me to tell her one of my fantasies. So I told her one of my favorites, where she and I are having sex and then I realize that there is someone watching us. She talks to the guy about how she's feeling, what she thinks he's thinking, what he'd like to be doing with us. We both got really turned on and started having sex and then she pretended my fantasy was really happening, pretended the guy was there. It was wonderful. Now we both share our fantasies. Sometimes if I don't have much energy, I'll tell her a fantasy and she'll masturbate.

Sharing fantasies with a partner can increase our comfort level with each other and add some variation to sex play. Sometimes people think there is something wrong with fantasizing about other people or scenarios during sex play. While people who have a tendency to "check out" during sex because of early trauma may want to watch this, having daydreams or fantasies while you're having sex with someone else doesn't have to mean you aren't interested in your partner. It may be a safe way of incorporating something into your sex life that you don't want to fully act out. A good example of this kind of fantasy play is sometimes called gender play.

Gender Play

/ identify myself as bisexual, but I've never had sex with a man, unless you count the somewhat accidental jerk-offs that occur during personal care. I used to dress up. One of my attendants

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liked to dress up and he got me undies and wigs. When my black lace panties arrived in the mail, he put them on me. While putting them on me, he asked why I was groaning. I told him I was coming.

Gender play is based on the traditional gender roles we all live with (whether we like them or not, or accept them or not). These traditional roles say men must be aggressive, active, always on top, while women must be passive, the receivers, always trying to please the man. When it comes to sex, gender play refers to messing with the gender roles you are traditionally assigned. So if you identify as a woman, and you have a woman's body parts, gender play might mean going out and buying a harness and strap-on dildo and wearing it to bed. You might use it to penetrate your partner, you might have your partner go down on you (and your dildo), or it may just be there to let you get more fully into the role of a man. If you identify as a man, gender play might mean acting more like what you think a woman is. This might include getting dressed up, talking in a different voice, acting and touching your partner differently, or it could be something that is strictly in your head. Gender play is a form of fantasy, sometimes just in your head, and other times acted out. Within the safety of play with a sex partner we can give ourselves the freedom to explore other ways of being sexual, free of rules about how men and women are supposed to act or feel. There is a lot more written on this topic, and if you are interested in learning more you can check out the Gender, Queer, and Transsexual/Transgender Resources section of chapter 14.

Touch

Ashley Montegue has written about the importance of touch, that the many nerve endings in our skin crave to be stroked, caressed, and held. We could all survive without touch, but at a huge cost. Many of us have conflicting feelings about being touched. We may have been touched in ways we didn't like. We may have been touched without our consent. Touch may be associated with pain or betrayal. The good news is that

the right kinds of touch can help us overcome these feelings. Sometimes it is helpful to start with professional touch—massage, Shiatsu, reflexology—and to work up to touch with a partner. Sexual touch includes a broad range of activities. It can be hair brushing, stroking a face, massaging feet, touching genitals. We learn about our partners through touch. We communicate about ourselves by the way we touch. Touch often starts before what we would traditionally call sex.

"Accidentally" brushing against a date's body, holding hands, running your hands through a friend's hair, placing a hand on a back or an arm during a conversation—all are tantalizing acts that can lead to sex. Sex starts with communication by way of words, touch, and nonverbal language. Too often, we don't value touch that doesn't lead to penetration. We rush through the "foreplay" to get to what we think is the real stuff of sex. Whether you are nervous about having sex with someone for the first time, or in a relationship where you feel the sex has gotten routine and dull, playing with touch (and not planning to have penetration) can be a great way to open up possibilities beyond what you expect. It's fun to get creative with touching. Touching can be as much about the intention and focus of the people involved as the physical sensation. Even if you lack sensation you can be turned on by touching someone or having someone touch you. If you aren't able to touch someone, you can still use touch by instructing your partner to touch themselves in ways that you describe to them. It may be their hand touching, but it's your mind that is guiding it. You may also be able to adapt your usual assistive devices for touching, by adding a piece of soft fabric, a feather, a scrap of leather, or a small stuffed animal. By discussing what will and won't work, you can probably figure out a way to make happen the kind of touch you want.

Orgasm

Because in my early sex life I felt so fearful, anxious, pressured, unable to say what I wanted, etc., I didn't have orgasms with other

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people. So now that I can have orgasms with my lover, it feels important to me that I do. However, neither my lover nor I feel that we have to have an orgasm every time we have sex. We also don't feel we have to have intercourse/penetration when we have sex, or that we even have to have sex when we've been making out or cuddling.

I come fairly readily with gentle clitoral stimulation — have never come through vaginal penetration with a penis no matter how skilled my lover, although I have come through someone's fingers sort of wriggling away inside me. I love coming — regard it as the high point of the whole event and would feel rather ripped off if I didn't come.

One of the most common expectations about sex is that both people will have orgasms. Some even expect that those orgasms will occur at the same moment. Orgasms can be wonderful, but sex without orgasm can also be terrific. We can get so focused on the goal of orgasm that we lose the joy of the sexual experience. We also tend to blame ourselves and feel incompetent if we have decided that orgasm is the most important thing and then are unable to attain it.

Some people have an orgasm in only one way—by having a certain part of them stimulated in a certain way—while others find they can have orgasms from more than one area or kind of stimulation. Some people learn to have orgasms from mental stimulation alone.

Orgasm can become a source of uncommunicated conflict in a relationship. If one or both people are blaming themselves (saying or thinking "I don't come fast enough/' "I come too soon," "It's my fault I don't have orgasms," "We should come at the same time"), then it can become difficult to discuss the issue. If a discussion can start with the assumption that sometimes people have orgasms, and sometimes they don't, it is easier to move on to talking about what each person would like to have happen, how they think this could be achieved, things they would like to try Not everyone has to discuss orgasm with every partner. It isn't always necessary, and besides that, sometimes it might not feel safe.

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THE PHANTOM ORGASM

Traditionally, research about things like orgasm and disability has been carried out by nondisabled researchers. This has led to many problems in the way they choose to redefine what their test subjects report. An excellent example of the way information gets twisted is the term phantom orgasm. This was a term that researchers came up with to describe something their subjects reported. In early research with people with complete spinal cord injuries, some people would report having the feeling of an orgasm, despite not having genital sensation. The "expert" explanation was that these people were merely experiencing a body memory of an orgasm they knew before their injury. These orgasms were called "phantom," like ghost orgasms that hang around in our body waiting for the opportunity to trick us into thinking we are feeling something. Of course this kind of definition is more about narrow-mindedness of the researchers than what was actually happening. More recent research conducted by Beverley Whipple and her colleagues has shown that in fact women with complete spinal cord injuries do experience orgasm, sometimes from stimulation and sometimes from fantasy alone, and that these orgasms are not of lesser quality than other orgasms.

Orgasm is important, going back to its being in the mind, that if the person I am with shows their appreciation, orgasm and etc., I get off mentally, so it is important to know that they are enjoying themselves and release their feelings. I even have had orgasms from a woman and man, separately, when they have nibbled and sucked on my chest and nipple area, especially around the line of feeling. It sounds crazy, but there is this feeling that just releases a tingle through my upper body