The Ultimate Guide to Sex and Disability (19 page)

As my kidney failure got worse, I stopped having orgasms. My husband thought he was doing something wrong. Now, a year after transplant, my orgasms are back on track. No one ever warned me about this and I was too embarrassed to ask about it.

In addition to causing difficulties in getting sexually excited and having orgasms, kidney disease may decrease

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vaginal lubrication. Women's periods may stop and then start again with dialysis. These resumed periods may be longer and more painful.

Decreased lubrication can be a problem for women living with a number of chronic illnesses or disabilities, as well as a side effect of certain medications. Some women find it difficult to talk with their partners about this, as they feel lack of lubrication is a sign that they aren't excited enough. But this is often not the case, and lack of lubrication may be completely unrelated to how turned on you are. A wide range of water-based lubricants is available to provide a relatively inexpensive way to make penetration play more comfortable and arousing (see chapter 9 for more information on choosing the right lubricant).

Kidney disease, diabetes, other endocrine problems, and some medications (including antidepressants) can all lead to difficulties attaining orgasm. Some (but unfortunately not all) doctors feel comfortable bringing this up.

Orgasm is a total body experience. When a person comes, they experience a rapid heart rate and breathing, flushed skin, swelling of the head of the penis or clitoris, and a feeling of tension and release. Men can have orgasms without ejaculation. Ejaculation is not as common in women but is something many women experience, and can learn to do as well, (see our discussion of the G-spot in chapter 3).

Orgasm. Phew. Well, it is important to me at times, but it has not always been particularly enjoyable. The truth is that orgasm is most important to me if I am sore and wanting to sleep. I masturbate to help fall asleep once a week or more. During sex with a partner, I am very rarely looking to come. More often, I want to give my partner an orgasm. This is out of a history of bad sexual choices and surviving sexual assault and rape, not out of something related to my disability My disability does have an effect, of course, but I'd already backed away from seeing orgasm as important before I ever identified as disabled. Acknowledging how my body is changing to tolerate less stress or use was most important in learning that my goals can change from minute to minute during sex. This didn't

deemphasize orgasm, but it did give me more fluidity during sex.... In the past six months I have had some incredible orgasms. And now that I've given myself permission to change what I want in the middle of sex, I find that even though I rarely start sex with the goal of cumming, halfway through, if my partner touches me just right, I can find myself completely changing from being focused on pleasuring her to being focused on having my own orgasm, my way. I think it's fair to say that I rarely know what my goals are till I'm already deep into the sex my partner and I are having.

Fetishes

Very strong preferences for certain kinds of stimuli are called fetishes. In the medical system, fetishes are seen as sick or "aberrant" sexual behavior. However, most fetishes are not a harmful or dangerous aspect of the sex lives of people who experience them. For some people having a particular fetish means that it is the only way they can become sexually aroused. As long as the fetish doesn't involve hurting themselves, or somebody else, and is consensual, we don't think people should be quick to judge fetishes as abnormal or threatening.

Fetishes often involve objects. The term was originally associated with objects used in religious worship that were thought to have important, even magical, powers. A fetish object is something that elicits a strong sexual response from someone. It might be an article of clothing (shoes, boxer shorts, glasses) or a material (leather, silk). We can also fetishize particular scenarios, or types of people, or body parts, or skin colors.

Some people fetishize disabled bodies, and others fetishize the idea of disability as well (see sidebar in chapter 4). The most common theory about fetishes is that they stem from childhood experiences in which we associate an object or experience with a feeling. This feeling may have been sexual, or could have been a feeling of comfort or excitement. Perhaps someone was wrapped in a satin blanket the first time they masturbated and now they associate the feel of satin with sexual pleasure. There is no conclusive evidence about this, and anyway it doesn't really

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matter what causes it. Fetishes, like so much else, can either enrich or trap people. It tends to trap them when they feel they have an awful secret that they must hide.

Here are some common fetishes:

• A willing exchange of power with one person dominating the other is called S/M and is discussed in detail in chapter 11.

• Getting aroused by dressing up as the opposite gender is called transvestism. This is different from feeling you are really of the opposite gender, or wishing you were. Transvestites (also called cross-dressers) simply love the experience of dressing up and find it a turn-on.

• Exhibitionists get aroused by exposing themselves sexually in public. The classic example of this is a flasher who is turned on by exposing his naked body to unsuspecting people. (This particular act is clearly not consensual and is illegal in most places.) Exhibitionism can also be wanting to be sexual with someone else in public.

• When someone is aroused by looking at someone naked or watching them being sexual with themselves or others, they are called voyeurs. There are countless other fetishes: frotteurism refers to getting turned

on by rubbing against strangers (again, not a consensual activity); pony play is a fetish that involves one person dressing up as a "pony" and another person being the "rider" and riding them around. Numerous fetishes focus on body parts or hair. Foot fetishes seem to be the most common, judging by the number of magazines and videos devoted to them.

Additional Considerations for Sex with Others

Your sex with others will be more enjoyable if you have first thought through any particular challenges you have to deal with regularly, such as mobility and sensation concerns, tendency to spasm, incontinence issues, ostomy bag use, and hypersensitivity to touch.

Mobility and Sensation

When thinking about having sex, especially with other people, mobility and sensation are obvious considerations. It can be hard to feel sexy

and to let yourself be sexual if concerns in these two areas are worrying you. Mobility has an effect on achieving pleasurable positions, nonverbal communication, and sexual safety. Individual variations in sensation need to be communicated to partners, which can be a challenge. The body-mapping exercise in chapter 3 can be used with a partner to help them understand where you have sensation and what kind of sensation you experience. You can also use it on them. There is a lot of variation in what parts of the body feel sexual. Often people just try to figure out where and how their partners like to be touched over time, but a body-mapping exercise can speed up the process— plus it can be lots of fun!

Much of what has been written about sex and disability deals with mobility and sensation, assuming that the primary question any disabled person would have is "How I can do this if I can't do that?" When reading the surveys that we based this book on, we were struck by how infrequently people addressed mobility and sensation issues. They are important issues, but our respondents were telling us that their biggest issue was getting over the hurdle of feeling sexy and letting themselves be sexual. Once they embraced their sexuality, they told us, figuring out how to have sex wasn't as hard as they had thought.

Our discussion of positions in chapter 8 addresses mobility issues. Dealing with mobility involves talking with partners about what you want to do and how you are going to do it. Mutual problem solving can be a fun exercise too, as you practice using toys, pillows, or any other props that you think may be useful or fun. Experimentation and creativity are equally important when dealing with sensation. Different parts of your body will have different sensation. Pleasure may be derived from what seem to be unlikely spots. Sensation can change over time, so remember to check things out regularly.

Spasticity

Feeling sexy is a challenge. I tend to tighten up during sex, so it makes it difficult to enjoy because I fear I may go into a flexer spasm.

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I'm a big woman and my husband is a little guy. One night we were having sex and I started to spasm and trapped him between my thighs. He couldn't get out. I guess we could have waited it out but we kind of panicked and called 911. It was pretty funny really.

Spasticity during sex can be a real challenge, especially as sexual arousal can bring on spasms. It can occur with CF) ALS, spinal cord injuries, and other neurological conditions. Bathing in warm water before sex may reduce spasticity, as well as relax muscles and joints. The bath can be incorporated into sex play. Some people take extra medication for spasticity before sex. If you are thinking of doing this, you may want to ask your health care provider about whether this is okay and when to take it. The relaxing effects of sex play may have the bonus effect of helping to reduce spasticity, so if spasticity is a problem for penetration, and penetration is desired, it can come later on in sex play. For women with hip adductor spasticity, rear vaginal entry lets the legs stay together while allowing penetration.

For men who can't straighten their legs, a good position is with the man on his back, his partner sitting on top. His partner can lean back against his bent legs. If his legs are right up against his belly, the partner can sometimes straddle the man on top of his legs, which allows for partial penetration.

The strategic use of pillows to prop legs into a comfortable position can help, especially when there are knee or hip contractures.

Surprise: Some people use spasms in sex. If your hand spasms, your partner may love to have it rubbed up against a part of their body that's very sensitive (say, their clitoris).

Some women with cerebral palsy (CP) have vaginal muscle spasms, interfering with penetration and causing pain. Avoiding penetration is one way around this. Some women find that the spasms go away after orgasm, so having an orgasm before penetration is another possibility.

Spasticity in the hands can make it difficult to put on a condom or insert spermicidal foam or a diaphragm. The E-Z On condom may be easier to put on, but is currently quite expensive (see chapter 12).

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SHAME AND SILENCE

In an excellent article in The Ragged Edge called "It Ain't Exactly Sexy," Cheryl Marie Wade writes about the difference between those of us who can use the bathroom ourselves and those who can't. She points out the fundamental difference between these groups. The second group has much less privacy—as she puts it, "no place in our bodies (other than our imaginations) that is private." She also points out that few of us ever discuss this. The disability movement, along with the rest of the world, is always ready to emphasize the abilities, the importance of independence, which serves to remind us that if we require assistance with aspects of our daily living it says something about us; that we are less than; that we are broken. We all like to keep things neat and tidy, everything looking as "sexy" and "whole" as possible.

One way to start breaking this cycle is by explicitly talking about the "dirty" things in our lives. If we can begin by being proud of our ability to take care of ourselves, which may require extreme patience with letting others come into our most personal and private spaces, then we will be in a better position to begin these discussions.

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Incontinence

Let's face it: Sex is a pretty wet experience, given female lubrication and both male and female ejaculation. Urinary incontinence can make it wetter, though not always noticeably so. Sexual stimulation can increase the chance of incontinence, but a regular bowel and bladder routine can minimize it. If there is a time of day that you are more likely to have sex, plan your bowel movements for earlier in the day.

Avoid coffee, tea, caffeine-containing soft drinks, and alcohol when planning to have sex. Empty your bladder before sex.

You can keep a catheter in during penetration. Men can bring it down along the penis and use a condom; women can tape it out of the way

Sex in the bathtub or shower is an excellent way of easing into dealing with body fluids.

Some positions (any that put pressure on the lower abdomen) increase pressure on the bladder. Try being on your side, or with the incontinent person on top.

Rubber sheets are more expensive than plastic ones, but they don't make a crinkly sound.

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They often contain latex, so should be avoided by people who are allergic to latex. It's always handy to have a couple of towels on hand.

Ostomies

People with ostomies often worry about sounds, smells, and the bag coming off. Any position that puts pressure or movement on the bag area will increase the chance of it coming off. Most people with ostomies say that a sense of humor is essential when having sex. It is a good idea to tell a prospective partner about the ostomy before actually taking your clothes off, but the timing can be tricky and each person needs to figure out what they are comfortable with.

You probably have already figured out which foods produce more gas and which ones go through your system quickly. These vary from person to person. Avoid these foods on days when you are hoping or planning to have sex.

Some people with ostomies have had the rectum removed. In women, the vagina and uterus can then shift backward, causing different sensations during penetration. Muscles that contract around the anus may have been removed or weakened by surgery, which also may change the way an orgasm feels.