The Ultimate Guide to Sex and Disability (20 page)

People who have had rectal surgery or who could have inflammation in the rectum should avoid anal penetration.

A stoma should never be penetrated as part of sex play.

Hypersensitivity

With a number of disabilities hypersensitive areas are not uncommon. Partners should know not to touch you unexpectedly and that sometimes a regular touch will be unwelcome.

People who have hypersensitivity in the genital area may feel like they have to pee when orgasm is coming. Consider the fact that the feeling of having to pee is a common experience related by women who ejaculate. So that feeling may arise from your bladder's being full and your needing to pee, or it may be that- you are one of those women who ejaculates and if you let it go, you would not pee but ejaculate. Or it may

be that neither is going to happen, it's just a feeling coming from all the genital stimulation you're getting.

Specific Conditions

There are sexuality issues that arise with specific conditions. These are discussed throughout this book, but there are eight conditions for which we have enough information to devote a section to each. We wish we had more information about many other chronic health conditions and disabilities. With publication of this book, we hope to encourage a larger, ongoing discussion of a wide range of specific concerns related to sexuality and disability.

Arthritis

Dealing with pain during sexual activity may involve careful positioning and propping, stopping for a break, or taking a hot bath before sex. Sexual activity increases the output of Cortisol from the adrenal glands, which may help alleviate pain.

Swollen painful joints, muscular atrophy, and joint contractures may make masturbation or having sex in certain positions difficult. Creative sexual positioning may reduce pain and pressure on affected joints. Sex toys that are lightweight or easy to hold can help with masturbation. Strap-on vibrators (often called "butterflies") will leave the hands free, but the controls may be tiny and difficult to manipulate.

Pain, fatigue, and medication may decrease one's sex drive, even as genital sensations continue.

Some women with arthritis report that a good position for cunnilin-gus or penetration is with their legs hanging over the bed and partner kneeling on the floor in front of them.

Cerebral Palsy

The sections in this chapter that address mobility and spasticity cover many of the concerns that people with cerebral palsy (CP) have expressed about sex.

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Uncontrollable movements (athetosis) can lead to moments that are either humorous or distressing, depending on how each partner views them.

Activities that involve large movements usually work better than small manipulations.

An athetotic tongue can be great for kissing, oral sex, and stimulation of nipples.

Cystic Fibrosis

Delayed growth and development are common in teens with cystic fibrosis (CF), as a result of nutritional problems. Teens may feel like sexually mature people, but others may view them as still being children because of their appearance.

Coughing is a problem for me even before I get to the sexual stage with someone. Even when I'm dating, I worry about what someone is going to think when I'm coughing up big gobs of mucus. I carry a Ziploc bag or two in my purse, and try to discreetly cough into the bag. I either try to throw a full bag in the garbage or just take it home. I had a boyfriend for a while and it seemed silly to keep hiding it, so I just said, "Look, I cough up mucus, you fart, I think we can each deal with these things." He thought that was pretty funny.

Both men and women with CF report that sex play can lead to increased coughing. It is a good idea to warn partners about this in advance. People with any kind of breathing problems may find that it is uncomfortable to have someone lying on top of them. If you really want to be on the bottom, have your partner use their arms or elbows to support themselves.

Women with CF often have thicker vaginal secretions than other women. Lubricants can be helpful.

Decreased energy can be a big challenge. See tips on energy earlier in this chapter.

Diabetes

Good diabetic control leads to a decrease in the complications that can produce difficulties in getting and maintaining erections.

Retrograde ejaculation, where the semen goes into the bladder instead of coming out the urethra, is common in diabetes. Less common are painful erections, which can be helped by massaging the perineum.

Women with diabetes may be more susceptible to yeast infections because of increased sugar levels in the vagina for the yeast to feed off. These can lead to reduced lubrication, odor, itching, and soreness. Lactobacillus acidophilus capsules inserted into the vagina for a few days after each period can help prevent yeast infections. These are available at most health food stores and should be refrigerated.

About a third of women with diabetes report that orgasms gradually become rarer and less intense. It may be that there is damage to the nerve fibers in the pelvic region, increasing the threshold of nerve signals needed for orgasm. A vibrator may increase likelihood of orgasm, because of the intense stimulation it provides.

Epilepsy

Some people find that sexual arousal or some sexual activities can precipitate a seizure. This can create a situation in which you actively try not to get aroused. It may be that this only happens when other triggers are present, like fatigue or forgetting your medications. If this is the case, then you can work on the other triggers and still let yourself become aroused. Or, depending on what your seizures are like, it may be worth it to you to risk a seizure to have sex.

Many anticonvulsants can interfere with the efficacy of oral contraceptives for women. Alternative forms of birth control should be used, or birth control pills should be combined with other methods. These drugs can also decrease interest in sex and the ability to maintain erections.

Because epilepsy is not an obvious disability, people with epilepsy may keep it a secret. But if there is a chance of a seizure during sexual activity, partners should be told and coached on what to do (and not to do) in the event that one occurs.

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Multiple Sclerosis

Many possible symptoms of multiple sclerosis (MS) have been described, and all can affect sexuality, including fatigue, depression, bladder and bowel incontinence, decreased or increased sensation, muscle weakness, spasticity, and tremor, to name just a few. Medications can also have sexual side effects. The good news is that many people with MS have satisfying sex lives.

Planning for sex with MS is more complicated than for some other conditions because it is so unpredictable. Ongoing communication is vital as what feels good changes from day to day or year to year. If you feel more energetic at a certain time of day (the morning perhaps), that's a good time to plan to have sex. A nap afterward will help restore energy.

It may take longer to achieve orgasm, and sometimes it may not be possible. Having the goal of enjoyment rather than orgasm will not decrease the chance of orgasm but may decrease anxiety about sex.

Men may have erectile problems that come and go. This book is full of suggestions of nonpenetrative activities, and the chapter on penetration (chapter 8) talks about possible solutions for erectile difficulties.

Women may have numbness in the genital area, and may need more stimulation to reach orgasm. Some women with MS use a vibrator during sex with a partner.

Tips on incontinence, spasticity, and fatigue can be found in earlier sections of this chapter.

A lack of coordination may make masturbation more of a challenge, though a change to a vibrator with a large head can be helpful, as placement does not have to be exact.

Spinal Cord Injury

More has been written about sex and spinal cord injury (SCI) than any other disability. Much of it is about gender and sexual performance, and how paralysis from SCI challenges traditional gender expectations (that is, the man will be dominant and controlling, the woman giving and attentive). In the midst of all these messages about how we are supposed to be and how now we can't meet these expectations, no one asks what we want.

Gender role stereotypes are not written in stone. Many people did not fit these roles before SCI, and some people examine the whole idea and reject it after SCI.

Furthermore, our societal expectations of what real sex is do not have to apply to any of us. Whether or not a man can get an erection or a woman can have an orgasm from clitoral stimulation does not define them as to their sexual potential.

Reduced genital sensation (or no sensation) typically occurs in SCI, depending on the level and severity of the injury. Some men still get erections, others don't. Women may have decreased vaginal lubrication, which can lead to vaginal irritation or even tearing. Bladder infections in both men and women may also make intercourse uncomfortable. Sensation and muscle contraction varies a good deal, so experimentation will help each person figure out their own unique abilities.

Transferring from wheelchair and positioning may require more help than your sexual partner can provide, entailing the help of a third person when you're planning to have sex out of your wheelchair.

As noted in a previous section, catheters and leg bags can be kept on during any sexual activity.

Many people notice areas of increased sensitivity just about the line where they lose sensation. Having this area stroked, licked, or tickled can be very sexually pleasurable. After SCI, people often discover how much sexual pleasure they can get from their lips, earlobes, nipples, armpits, inner elbows, and neck.

Skin ulcers are another concern. Prolonged pressure on a part of the body where there is no sensation can cut off the blood flow to the skin, leading to ulcers, as can friction. Partners need to be aware of this and change positions frequently.

Women may continue to have orgasms regardless of level or degree of paralysis. These orgasms may be similar to those before injury or may be felt in places other than the genitals, either all over the body or in a specific place like the breasts or lips. Some women find that cervical stimulation (with penetration by a sex toy or penis) can induce an orgasm even in the absence of genital sensation.

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Be on guard for autonomic dysreflexia (AD), which can lead to a life-threatening disruption of the autonomic nervous system marked by increased spasms and chills. This is discussed in chapter 12.

Stroke

One of the big sexual fears of people who have had a stroke is that sex will bring on another one. This is unlikely, and if another stroke in going to happen, it will do so with or without sex.

Language problems (both speaking and understanding) after a stroke can interfere with sexual communication, and nonverbal signals may need to be developed.

If balance, strength, or coordination are poor, sexual activities that require little exertion can be tried. These would include anything where the body is supported.

Decreased interest in sex can happen after a stroke, and cues of sexual arousal might be missed. Being willing to have sex, even if you aren't sure you are aroused, is one way to get around this. Erection issues include not being able to maintain an erection and taking more or less time to ejaculate. An erection that comes and goes is not a barrier to great sex when you are having nonpenetrative sex.

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people seem to have. But I do like having sex. Sometimes regular sex is overwhelming. There is just too much to take in all at once. My autism makes this a problem. Oral sex is great because there it's just one area to focus on. I close my eyes and just feel and smell and explore every little nook and cranny. My last lover said that she never felt like she had to hurry to come because she knew I loved doing it and liked having lots of time.

In many ways oral sex is ideally suited for people with disabilities. It may get around issues of spasticity, low energy, problems with erections, positioning needs, lubrication, and anything that makes penetration difficult or uncomfortable. And, as Panzarino's sign points out, some of us are particularly gifted at doing things with our mouths for hours without having to come up for air!

At the same time, our genitals are often the site of a lot of negativity, ranging from unpleasant messages to abuse. Some of us were told that our genitals were only for reproduction. Or others assumed that we could never have children and therefore our genitals should be ignored entirely (except to keep them clean). We have been told they are dirty, ugly, or smelly. Girls have been given the message that we should only notice our genitals when taking care of our periods.

In addition to this, many of us have had experiences with caregivers and professionals touching and looking at our genitals on a regular basis in connection to bladder and bowel routines. All this may make this part of the body one that makes us feel awkward and anxious.

Because of the physical structure of women's genitals, they are mostly hidden from view Many women (and their partners) will have sex without ever really looking at their own genitals. While most men have better access to their genitals, it is still informative and exciting for them to get feedback about the area. Communicating about the look, feel, smell, or taste of someone's genitals may be difficult at first, but they are likely to love hearing it.

Giving and receiving oral sex can be a positive step toward changing our relationship with this part of our body. Specific techniques aside, just the act of paying close and loving attention to your partner's genitals can be intensely exciting for both partners."

Another exciting thing about oral sex it that it is a sensation that is impossible to replicate on one's own. The feel of a finger is much different than that of a flexible, warm, wet tongue.

/ am thirty-nine years old and married. My wife and I have a satisfactory sex life. I now have a penile prosthesis, which I had surgically implanted when I was about thirty-two. We have genital sex often, and I enjoy giving her oral sex. When I engage in cunnilingus with my wife, she just about always reaches orgasm. My face becomes moist with her vaginal secretions, and she becomes wet all over her entire pubis and inside the cleft of her buttock. This wetness is the visible sign of her pleasure. When it is my own turn to be pleasured, I try to imagine myself and my wife covered in the wetness of my own sperm. Since I do not have sensation in my penis, and I cannot ejaculate sperm, the best I can do is to conjure up some mental image, and thus we rely on fantasy as part of our sexual repertoire in order to add to the arousal.

Before we dive into this chapter we want to make a note about the language we use here. For ease in description we refer to the "giver" and the "receiver." Sometimes people who haven't enjoyed oral sex before think of it as an activity that involves one person doing a job (the giver) and the other person enjoying themselves (the receiver). In fact most people who give oral sex a try end up loving both sides of it.

Common Concerns

Appearance

It is the rare person who was raised to feel proud about their gorgeous genitalia. The best way to begin dealing with negative images is to get a chance to take a good look for yourself. See chapter 3 for tips on this. Whether you get the chance to see what you look like, or feel what you look like, try to discover at least one thing about your genitals that you like.

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In addition to understanding your own body and how you feel about it, be respectful of how your partner is feeling about him or herself. With all the shame and guilt they may feel about their genitals, they may not be comfortable with the idea of receiving oral sex. If your partner feels this way, don't take it as an insult or an indication that you are being rejected. Respect their need to go at their own pace, while you provide support and positive feedback about their desirability.

Smell and Taste

All the messages we've taken in about our genitals set us up for finding things wrong with what's "down there." Two of the most common concerns people have is smell and taste. It seems as if men in particular have a lot of preconceived ideas of what women's genitals smell like. This is not usually based on actual experience, and most men find that once they try it they like it far more than they expected.

/ was married for a while and my husband would never go down on me 'cause he said it smelled. I believed him because I knew that it was a gross part of my body. A while ago I started sleeping with someone who really wanted to go down on me. I wouldn't let him because I didn't want him to be grossed out. But one night when we smoked some dope I let him and he loved how I taste. He said it was tangy, not gross at all. And I felt like I was having sex for the first time, it was so great and not like anything I had ever felt.

There are sweat glands in the genital area that, over the course of the day, can generate a lot of perspiration. A different odor can result, particularly if you wear clothes that are tight or not very breathable, and if you spend most of the day in a seated position. You can do a couple of things about this, but again we want to propose that much of the hesitation about oral sex is based on people's expectations rather than experience. The first thing you can try to do is time a bath or shower just before you're going to have sex (particularly if it's after a long, sweaty day). Ideally, make the cleaning up part of the sex play. Both the bathtub and the shower are great places for sex, and even if you're not doing it with

your partner, cleaning yourself can be a kind of solo foreplay, getting yourself geared up for the excitement to come.

You should also be aware that an unpleasant smell may be the result of an infection; if it persists it may be worth checking out with your doctor.

If you use lubricant during sex play be aware that some kinds taste sweet, while others have a bitter taste. If your partner complains about your taste, it could be the lube.

Finally, we should point out that a lot of sex educators recommend using condoms and dental dams for oral sex, and these barriers also block genital taste and smell.

Because people have a lot of expectations about going down on someone, much of it negative, we recommend taking the pressure off oral sex by leaving it for later on in sex play. Don't make it the first thing you do after kissing, because you both may still be a little hesitant and feel awkward. If you wait until you're both fully turned on, with your inhibitions down a bit, a lot of the negative expectations will be gone. Another good reason to take some time before going down is that some people say that the more excited a woman is, the sweeter her natural lubrication is.

Incontinence

Bowel and bladder incontinence are a huge concern for many people. See chapter 6 for a longer discussion on this topic, as well as tips on ways of dealing with it. For some people incontinence is a bigger issue with oral sex because someone is right there, and there's less of a chance that your partner won't notice if your body releases some urine or feces as a response to being turned on or excited. The best thing to do is to avoid having a full bladder or rectum when you are going to be receiving oral sex. This may mean catheterizing just before sex, and avoiding alcohol or caffeine if you're thinking about having sex in the next few hours. They are both diuretics, so your bladder will fill up more quickly.

The Gag Reflex

Almost all of us have a gag reflex. It occurs in a spot in the throat that makes us gag or want to throw up when it is touched. The gag reflex is

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more an issue with fellatio (going down on a man) than cunnilingus (going down on a woman). The size of the mouth cavity is almost always smaller than the size of the penis. So when many of us try to take someone's entire penis in our mouths we encounter the gag reflex. Fellatio doesn't have to include taking his cock all the way in your mouth. Still, this technique, called "deep throating," is one that a lot of people can learn, and several books and websites (noted in the resources chapter) offer tips on mastering it. But not everyone can learn to get past their gag reflex, nor is deep throating the be-all and end-all of oral sex.

Cunnilingus

One of the most exciting aspects of sex is anticipation. Wondering what's going to happen next, becoming aware of what one hopes will come next, and being surprised are all part of this. Going down on a woman is as much about having a sense of adventure and exploration as it is knowing the right thing to do, and when.

/ enjoy sex and foreplay probably as much as anyone else does. My husband and I both enjoy giving and receiving oral sex, and genital intercourse. Orgasm is certainly important to me — can't imagine sex without it. I'm pretty lucky. I'm multiply orgasmic and have an orgasm every time my husband pleasures me. I need direct cli-toral stimulation to climax, so traditional intercourse is pleasant but generally doesn't make me come, unless I'm also using a vibrator. Receiving oral is my favorite and always gets the job done.

Getting the Lay of the Land

If you are a bit unsure about what everything is "down there," now might be a good time to go back to chapter 3 and check out the picture of female genitals. Their appearance varies from one woman to the next, so take your time with your partner and really check her out. You can use your lips, tongue, mouth, and other parts of your face and head to explore the whole area. If both of you are comfortable with it, start

with the lights on so that you can really see what's going on and where you are.

While most people prefer external stimulation, you don't have to limit your explorations to what is immediately accessible to you. You can use your tongue to explore not only the varied folds of skin but also what's immediately inside your partner's vagina. Many people enjoy penetration while receiving oral sex, and fingers or toys are perfect for just this purpose. Ask your partner whether this is something she's comfortable with.

As you're exploring don't forget to keep other kinds of communication open. If you happen to be having a grand time with your discoveries, be sure to let your partner know (a moan is often as good as a verbal compliment for feedback). It's also great to hear from the receiver what feels good and what doesn't. You can experiment with different kinds of communication. Some people will be comfortable talking, explicitly saying what works and doesn't for them. But breathing, moaning, using your hands to guide your partner's head—all are equally useful ways to communicate what you want, or what you want to try.

/ love it when I can watch my boyfriend go down on me. Sometimes hell look up at me, or just open his eyes and have this look of being delirious with excitement, and it turns me on even more. I think I'd like it if he made a little more noise, but as long as I can see his face and he's busy working away I'm satisfied with it.

As we discussed in chapter 3, for most women the clitoris is the site of the greatest sensitivity. If your partner enjoys clitoral stimulation, it would be good to find out what kind of stimulation she likes the best. Some women enjoy direct stimulation over the clitoris; others prefer it to the side (sometimes even a particular side). Some like gentle stimulation, while others need and love strong pressure.

If neither of you has stated a preference, why not just experiment with different kinds of stimulation? You can use your tongue to gently brush or nudge the clitoris, you can slowly lick her clitoris with the

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flat part of your tongue, or lick only the sides of the clitoris. You can put her clitoris in your mouth and gently (or not so gently) suck. Play with different tongue strokes. One suggestion is to use your tongue to spell out the alphabet, which allows for a wide variety of tonguing directions, leading to all kinds of delightful discoveries. You can start by running your tongue from the bottom of the vulva right up to her clitoris. Everybody is different, but most women have folds of skin that will love to be licked or sucked. Some people will enjoy gentle tugging too.

You will recall that the clitoris is covered by the clitoral hood. Some women love to have their clitoris more directly stimulated, while others find it uncomfortable or even painful. If you've got a free hand, you can use it to gently pull up on the skin just above the clitoris. Doing this will pull back the clitoral hood and will expose the clitoris more than it normally would be exposed. Then lick gently, paying attention to your partner's response. Another sensitive area for some women is right around the urethra.