The Ultimate Guide to Sex and Disability (5 page)

Teens especially face a number of barriers as they work toward becoming sexually healthy adults. Medical appointments or hospitalizations may result in missing the few sex education classes that are given in early adolescence. Parents may assume that a child with a disability is not a sexual being, and the teen will pick up on that

assumption and may come to believe it. Institutions and families may choose a prohibitive approach to risk taking, so teens are protected from risk and do not know how to judge levels of risk or how to protect themselves from harm in any way other than totally avoiding things that might be risky. A parent and a teen may both resist any separation from the other, whether emotional or physical, even though separation on some level is a key element in developing identity, exploring sexuality, and growing up.

Differences in the rate of physical development can also make things hard for teens. Some disabilities are associated with early puberty, and may lead to feelings of embarrassment or shame. Other teens experience late puberty, and get treated as if they are much younger than their age, being seen as nonsexual.

As adults, we face many barriers to exploring our bodies and sexual feelings, many of which result from issues of identity and self-esteem. One of the problems with addressing these concerns is that they usually take a backseat to more obvious, functional issues. So instead we might dwell on looking for partners, all the while ignoring the fact that we may have attached all our feelings of self worth to finding the partner in the first place. This is something everyone does, to some extent, regardless of disability. We don't need to "have it all figured out" before we go out and look for other people to be sexual with.

One other barrier exists, particularly for people whose bodies and genders don't fit within the narrow definitions of male and female. Those of us who identify as transsexual or who are intersexed can be frustrated by the fact that most discussions of sexual anatomy and response force us to choose one type of gender identity (they tell us that if you're a woman you'll feel this way, or if you're a man you'll feel that way). In parts of this chapter we fall into this trap ourselves, and while we avoid doing this as much as possible, the limits of language and space in this book meant that we haven't always succeeded.

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Become Your Own Sex Expert

Despite all the myths you've grown up with and the barriers imposed on you, the good news is that you have limitless ways to explore your own body No one else can figure out the best way for you to do this. We will make some suggestions and leave it to you to figure out how to make them work for you.

In general, people lack knowledge about sex. To varying degrees we are all ignorant of our sexual options, ignorant of sexual possibilities, and even ignorant about our own bodies. If you're nondisabled and you want to educate yourself, it isn't always easy to do, but at the very least you always have access to your own body, and sometimes privacy, too. By contrast, if living with your disability prevents you from having access to your whole body, you are often, quite literally, at the mercy of others. We don't just mean being able to masturbate, or put on a condom, or position yourself for sex with a partner. We also mean being able to see what your whole body looks like. It's hard to take control of your sexuality when you may not know the raw materials you're dealing with.

For some people it won't be feasible to see and touch all parts of their bodies. If you require twenty-four-hour assistance you may never have someone willing to hold a mirror to see what your clitoris looks like. You may not feel comfortable even asking for that help.

My doctor said I should have a Pap smear, even though I've never had sex. He sent me to another doctor who has a hydraulic exam table. Even with that it took a lot of maneuvering to get me into position. Then she said, "My nurse can hold a mirror so you can see what I'm looking at and doing." I said, "Oh that's gross, I don't want to see that." But she told me it wasn't gross and that I should take a look. It was really cool.

In most standard sex manuals the advice is the same: Own your body. And in these books "owning" is usually defined by seeing. There are several obvious "ableist" assumptions here. We don't all experi-

ence reality through sight. Does this mean that we're just screwed (so to speak)? We'd say no. You have other ways to explore your body.

Getting Support

Now that we've made our arguments for all the reasons to become your own sex expert, there are some potential risks we want to mention. As with any form of self-discovery you run the risk of finding out stuff that is difficult to deal with along with stuff that is exciting and fun. Often memories are linked to sensations. We will smell something and a childhood episode will flood back. We are touched in a certain way and another memory arises. Without a stimulus, these memories can remain hidden for years. The exercises we mention throughout this chapter, and at the end of it, involve working with your body and getting more in touch with your body, which may trigger memories from the past, both pleasurable and traumatic.

What supports will you need to have in place in case you need to deal with things that come up during your experience? You may have overwhelming feelings that you don't know how to cope with. Do you have someone you can talk with about these strong feelings or memories? If you don't have a friend, family member, or caregiver with whom you can hash things out, or some other way that you work through difficult things in your life, you should consider getting the number of a crisis or help line. Phone lines are not accessible to everyone, but there may be other community or Internet resources, such as TTY machines available on some public pay phones. Some people also find it helps to listen to music or write when faced with tumultuous emotions.

You may be quite out of practice in thinking about your body as something worth getting in touch with. It's possible that part of this whole "getting in touch" thing means becoming more aware of physical or psychological pain. So take the time you need to decide if and when it's worth doing this.

We don't mean to make this seem scary or make it necessarily a big deal. But we speak from personal experience—support can be very important when doing any sort of self-discovery.

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Sexual Anatomy

You may have heard sex educators speak of every part of your body being a potential sex organ. That's great news, don't you think? But it's one thing to say that and another to realize that potential. Here we will talk about various parts of the body and offer some tips on self-exploration. As with everything in this book, no one method will work for everyone, so feel free to tailor our suggestions to your needs. It would be silly to assume we're all the same and our paths to sexual discovery are the same, so take what seems to be helpful and leave the rest. First we will talk about some basic approaches and environmental factors you may want to be aware of or create.

Although for many people the most intense sexual feelings happen in the body parts we will describe below, much of the feeling of excitement and release comes from more general body feelings. When sexually aroused, we all have an increase in heart rate, breathing, body temperature, and blood pressure. Blood collects in various places, including the ears and lips. The skin gets flushed, sometimes especially on the chest and neck. All of these things intensify. If there is no orgasm, they gradually settle down. If an orgasm occurs, they resolve more quickly. The rapid fall in body temperature—as well as the pleasurable feelings of release and sexual satisfaction—often makes people fall asleep.

Breathing

You may be wondering why we begin our discussion of sexual anatomy with breathing. Although we may do it differently, breathing is something we all do, and we can all have some awareness of. What we propose is a way of using your breath to take a guided tour of your own anatomy.

There are many different schools of thought on breath awareness, and what we present here combines what we have learned from some of them. The majority of people reading this book can control their breathing to some extent. However, breathing may be difficult because of lung diseases, muscle weakness, heart disease, or problems with the

nerves that make breathing happen automatically. Paying attention to the breath will not make any of these things worse; in fact it may help them. If you do not have control of your breathing and use a ventilator, you have probably already noticed that your vent rate can affect how you feel—more energized when the rate is higher, more relaxed when it is lower.

Breathing, like sex, can be both energizing and relaxing. One of the great unspoken benefits of sex play is the relaxing effect it has on most of us afterward. Sex is a great way to deal with insomnia (like nature's sleeping pill!). It is an excellent form of pain management, can help with spasms, and increases blood flow. Many of these benefits occur because of what happens to our breathing when we're having sex.

Because of my disability my parents are very protective. They always listened to make sure I was okay I always felt I had to be really quiet when I would masturbate. When I first started having sex with my boyfriend, I was in the habit of being really quiet. I'd expend a lot of energy not making noise. Often I'd be holding my breath, without even realizing it. Then he said, "Don't you like this? You're all tense and you never make a sound." I realized I didn't need to hold myself back.

We don't all breathe at the same rate, nor can we all do complicated Tantric breathing rituals (more on those in chapter 10).

Conscious breathing is probably the oldest known technique to bring your attention to your body. We breathe in mainly through the efforts of the diaphragm, a thin, domed muscle that stretches under the lungs. When the diaphragm flattens, it pulls down, making the pressure in the chest less than that in the atmosphere, so air flows in. We also have "accessory" muscles that can help us breathe in, though we don't use them as much. When the diaphragm relaxes, it goes back to its dome shape and air flows out of the body. Breathing in (inhalation) takes muscular effort, while breathing out (exhalation) is a result of relaxation. Air flows through the nose or mouth and into the trachea, a large tube that splits into two smaller tubes (bronchi) that take air into the lungs where

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diaphragm

Illustration 1. Respiratory System

it ends up in little air sacs (alveoli). Oxygen from the sacs goes into the bloodstream, and waste products in the body, like carbon dioxide, go into the alveoli and then leave the body during exhalation. We breathe more heavily when we need more oxygen.

When practicing with the breath, it is always easier emotionally to play with the exhalation, as it is a relaxing breath. If you find yourself feeling distressed, concentrate on breathing out, and try to gradually lengthen your exhale.

Breathing is something our bodies usually do involuntarily. Most of us have at least some control over when to breathe, when to make noise (talking or otherwise), and when to exhale. We go through our days not using this control, instead just letting it happen. This is a good thing, in general. By breathing automatically, we free ourselves to do other things. But it can be helpful to learn to take control of your breath.

Find a place where you can be comfortable. Try different positions and find one in which you are minimally distracted by your body. You may want some cushions to prop you up. Your position should be as symmetrical as possible, so if you can't sit, it is better to lie on your back than on your side. Close your eyes if you wish. Breathe normally and observe your breath. Count the seconds it takes you to breathe out. Slowly extend the exhalation. How do you feel when it takes longer? What if you pause between breathing out and breathing in? Then do the same with inhale. Count the seconds your inhale takes and then extend it. Try holding your breath at the end of the inhale. Do you notice a change in the way any part of your body feels (toes, ears, anywhere)? This is enough for a first effort.

The next time you try this, do the same things and then experiment with sound. Most of the sounds we make (moaning, talking, singing, yelling) come from our vocal cords at the top of the trachea. We also make some quiet noises (like whispering) by moving air around the back of the throat, through either the nose or the mouth. What sounds can you make breathing through your nose, then your mouth? How soft a noise can you make? How loud? Do each of these things slowly and make mental notes on how they feel. Now do the same thing with your vocal cords, trying out kinds of sounds. The next time, start playing with your inhale and exhale again, then explore the differences with breathing through your nose or mouth. You can breathe in through one and out the other, then switch.

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Now try to imagine that you are sending the breath to different parts of your body. You can imagine it flowing to your head, your fingers, your genitals, your toes—to any part of your body, whether or not you have feeling in that area.