The Ultimate Guide to Sex and Disability (10 page)

Most people who use medication as part of daily living know an awful lot about it: what type of drug it is, how much of it they take, what it feels like before and after taking it. But do you know about the effects

MEDICATION SIDE EFFECTS

Remember that no one experiences every side effect of a drug. Often, common side effects are experienced by about 20 percent of the people who take a medication, with varying degrees of severity. For some, side effects go away after a time.

Here are some common drug effects on sexuality:

• Decreased interest in sex (decreased libido): SSRIs and other antidepressants, timolol, spronolactone, propranalol, estrogen and progesterone, methyldopa, digoxin, doxipin, cisplain, cimetidine, chlorthalidone, chlorpormazine

• Difficulty having orgasms: SSRIs

• Decreased genital sensation: SSRIs

• Difficulty getting erections: SSRIs and other antidepressants, atenolol, baclofen, cimetidine, clonidine, digoxin, propranalol, spironolactone, other diuretics, timolol, hydralazine, haloperidol, naproxen, prazosin, progesterone, clofibrate, methadone, methyldopa

• Difficulty ejaculating: baclofen, SSRIs

Street drugs also have sexual side effects:

• Decreased interest in sex: speed, cocaine, diazepam, heroin, marijuana, PCP

• Difficulty getting erections: alcohol, speed, heroin, marijuana, nitrous oxide, PCP

• Difficulty having orgasms: speed, cocaine, heroin

• Difficulty ejaculating: speed, cocaine, diazepam, heroin, PCP

that meds have on your moods, thoughts, and sexuality? Probably not, unless you have figured it out by trial and error. Not much research has been done on this. When selective serotonin reuptake inhibitors (SSRIs, a type of depression medication) were first tested, the reported rate of sexual dysfunction was quite low. Now, though, this is known to be a fairly common side effect (felt in decreased libido, reduced sensation, painful orgasm, difficulty achieving orgasm, and so on). It isn't clear, however, that the investigators asked about sex, rather than just waiting for people to tell them about it. Drugs, both over-the-counter and street,

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can affect sex by increasing or decreasing blood flow, influencing the way we think, heightening or damping sensation or the perception of sensation, and elevating or lowering hormone levels (which can lead to changes in lubrication and libido). These effects can be either positive or negative. They can also be indirect. So someone on SSRIs may feel an improvement in libido as their depression lifts. Sexual pharmacology, or the ways that drugs interact with sexuality, is still a relatively new field. Chapter 14 lists some resources we can turn to for answers. If you can't get access to these books, you can direct your doctor to them so that you may find out if meds you're taking are affecting your sexuality, and if they are, whether alternatives are available. It may be difficult to talk to your doctor about this, especially if your doctor is in denial about your sexuality or does not think about this as an important aspect of your life. But it is often worth the effort.

Exercises

1. Make a list of things that are important to your sex life. This may (or may not) include other people, kissing, erections, lubrication, penetration, hugging, and feeling sexy. How has this changed over time? If you did not always live with your chronic illness or disability, would this list have been different before you acquired this disability? Do you think it will change in the future?

2. Throughout this chapter we have offered suggestions for small exercises designed to make you more aware of your sexual thoughts and feelings. This may be easier said than done. Many of us have been conditioned to ignore our sexuality, conditioned by parents, life experiences, religious figures, the media, or from living with pain that makes even finding a sexual thought a frustration. If you've been going through this chapter thinking none of this applies to you, you might start by looking at the ways you've been removed (or have removed yourself) from communicating with yourself sexually.

Write a short story of your life and your sexual response. It doesn't have to be fancy or on paper; you can do it in your head. Think about the earliest time you can remember feeling sexy and the messages you got about it. What are the messages you got from doctors, parents, teachers, peers, about being attractive, attracted to others, sexual in any way? If you've had to deal with the medical establishment your whole life, chances are pretty fair that you've experienced some form of abuse related to your body (from an inappropriate comment to being assaulted, and anything in between). What are the messages you took from those experiences?

sexual communication can be seen as a political act. If we look like we live with a disability, we aren't supposed to be having sex...and we certainly shouldn't be so bold as to talk about it. By pushing the boundaries of this stereotype we force people to confront their bigoted (or merely ignorant) notions about anyone who looks like they live with a disability. We may even challenge our own notions of disability and what living with one or with a chronic illness means.

/ gave up on talking to my family about it when I was a kid, but I'll still sometimes make a comment, or just start talking about sex with certain people because I know it gets a rise out of them. They just never expect it from me because of the way I look. I like the fact that it pisses people off a little and makes them squirm.

Communication requires several steps. The first is knowing what it is you want to communicate, which means understanding what you want or need sexually. This step is really about talking with yourself, carrying on a dialogue that brings you to a clearer picture of what you want. The exercises at the end of chapter 3 contained a suggestion that you make a list of things that are important to your sex life. That list is a good place to start. Sexual fantasy can be a rich element in this process. If you can, give yourself permission to fantasize about any sexual possibility, knowing that many ideas will come and go through your head, and that many people enjoy fantasizing about doing things that they wouldn't actually want to do. To be able to tell someone what we need and want out of a sexual experience, we ought to have some idea of what we need and want, to begin with. We don't want to make this sound easy. Everyone has a hard time communicating their sexual needs. We haven't even found that it gets a whole lot easier the more we do it. The only thing we can say for sure is that without telling someone what you want sexually you are very unlikely to get it from them by chance. It'd be like expecting to win the lottery without picking a set of numbers and buying a ticket.

The next step is figuring out how you are going to get this message across. At this point, most sex guides say something like, "So what you

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have to do is sit down with your partner, talk with them, express your feelings, desires, inhibitions," and so on. But, of course, we don't all sit down and talk easily. Communication happens in a dozen different ways, and what we need to do is find out how we communicate best; how we feel most confident, comfortable, and safe; and then use that method as much as possible.

As an AAC user, there is one thing that has always frustrated me in developing a personal and intimate relationship, or even a simple friendship. Having to use a voice output system device, or a display letter board, often does not reveal my true self or my true identity My personality and character traits are muffled by a monotone voice or a display that is slow and tedious in responding. This leaves me with little free-flowing dialogue and social interaction. Also, what most people seem to forget is the sound of a person's own voice does attract people. Without an authentic-sounding voice, it is hard to attract people from the opposite sex. I think this specific issue is often overlooked by speech therapists, although there is still the lack of technology that may solve this problem. However, it does need to be raised, and talked about.

Most of us tend to overvalue talking and undervalue all other ways of communicating. Facial expressions, screaming, moaning, moving, gazing, whistling, blowing, laughing, and crying are all ways of saying things. Even if spoken language is not possible, it's still important and possible to communicate in many ways.

Now put your plan into action, letting a potential partner know what you want them to know. An important part of this is making sure the person you want to talk to is paying attention and that the way you communicate can work for them as well as you. At first you might need to check in with them about how they are understanding what you're saying, how they are feeling about it, and so forth. This process goes back and forth, getting clearer (you hope) at each stage. It is always helpful to summarize things at the end, with words, gestures, or looks, to make sure that everyone understood the conversation in the same way. We

consider good communication to be consensual—meaning all the people involved in the conversation have agreed to have it and they all try to make sure everyone can equally understand what's being said.

The last stage is, of course, being willing to hear a response. Communication, as we'll say again and again, is a two-way street (or it could be a three- or four-way street, depending on how many people you're involved with!). Getting up the energy and often courage to say something is one thing, but being willing to hear a response that may not be the one we want to hear is another thing entirely.

Barriers to Good Sexual Communication

So there I was, about to have my very first sexual experience with another person, and he says to me, "Tell me exactly what you want." I didn't have a clue what I wanted, I just knew that I was aching for something. And even if I had had a clearer idea, I don't think I could have said anything, I would have been too embarrassed.

In our survey, many people told us they would hesitate to initiate a conversation for fear of confusing a partner, hurting a partner's feelings, or being anxious that they already ask for too much from a partner and don't feel "right" adding to that burden. In addition, some may hesitate to communicate what they want or need sexually because of problems in their relationship.

Myths

The idea that sex should be spontaneous and that talking about it will make it "clinical" or spoil the mood is a major barrier to communicating about sex. We've already discussed the myth that sex is something that comes naturally and doesn't need to be talked about with a partner. This is a very powerful, but confusing, myth in our culture. We are surrounded everywhere by information that is supposed to make us better sex partners. Listen to talk radio, watch TV talk shows and infomercials, read the newspaper or magazines—someone is always ready to tell us

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how to do sex better. It's almost expected these days that we should want to improve ourselves as lovers. But talking honestly and openly with the people we're going to have sex with is still rarely mentioned. We're supposed to learn how to do it ahead of time and surprise our partner. There is the implicit idea that to be a good lover we must somehow know what a partner wants before they have a chance to ask, and we shouldn't have to talk about what turns us on because your partner should know. There is little support for us to really talk about sex or sexuality, to speak honestly about our desires.

Negative Beliefs

Our own and others' beliefs and biases about sexuality can get in the way of communication. Growing up, we have all received messages about sex. If you were raised believing that you had no right to your own sexual desires, no right to your own body even, that your body was the property of doctors who were busy fixing you and that your desires were something you needed to get rid of, or were a luxury, all these factors can make it difficult for you to share sexual thoughts with others or even yourself. Most of us think that other people have an easier time talking about sexuality. But with a few exceptions, we're all raised with some sex-negative beliefs. So when any two of us get together the results can range from unbearable to embarrassing to comical to great.

Extra expectations can be placed on anyone living with a disability. When we don't look like everyone else, or if we can't keep up with the speed of a conversation in a fast restaurant, or we can't go to a specific dance club because it's too smoky, nondisabled people tend to have an expectation that we will educate others about our differences. Sometimes this happens in a nice "gee, that's fascinating, tell me more" way, sometimes in an annoyed "why can't you be like everyone else?" way. Either way, one underlying message is that we are too much trouble, and it shouldn't be others' responsibility to make change. The message is that we're different and thus it's our responsibility to communicate all they need to know. Rarely do nondisabled people take the responsibility for their biases.

Sexual Information and Vocabulary

Many of us lack basic information about our bodies, desires, and sexual response. Sometimes we don't even have the language to discuss it. It's a bit like trying to talk about mathematics but not knowing any numbers. The situation is even worse than this, because we don't just have a lack of information, we have m/sinformation. Much of what we learn from the mainstream media is inaccurate or misleading. If all we know about sex is what we learned on television, then communicating with someone about our sexuality becomes very difficult. Some of us did not have access to the same kinds of sex education our peers did (and the sex education they received was hardly adequate). Very few of us are raised knowing the actual words for all our body parts, or being able to discuss them without shame or guilt.

One of us works in a sex toy store and sees this all the time with nondisabled people as much as with people living with disabilities. People come into the store, obviously interested in buying a sex toy, and clearly wanting help, but they don't know how to ask. Some of this comes from embarrassment but often it's because they simply don't know what to ask for (since most of us don't know the finer details of sex toy lingo). Because they don't have a sex toy vocabulary, people end up flustered and will often leave without talking at all unless they are approached by someone friendly who can offer them the words to ask their questions. A lot of people who use augmentative or alternative communication may simply not have the symbols or the words to communicate about sex at all. Even when they have a keyboard to spell words out, they still need to know the words first.