The Ultimate Guide to Sex and Disability (15 page)

We can state categorically that sexuality is the most complicated thing attendants and their employers have to negotiate. We aren't suggesting that it's your job to make your attendant comfortable with the topic, or to pander to their issues about sex or morality. But the topic doesn't usually come up during an interview, and some tact is required in broaching the subject.

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When we are talking about assistance, we are not talking about direct sexual contact between you and your attendant. We are referring to an attendant's facilitating sex play either for you on your own, or with someone else. They may be helping you set up a vibrator to play with, helping you put on a condom, or positioning you for sex with someone else.

Remember that you likely don't know anything about your attendant's sex life or beliefs. All of us are raised to think that everyone else has a better sex life and are much more comfortable with their own sexuality. Don't assume an attendant is more comfortable with sex than you are. Don't assume he or she has a good, healthy sex life. Don't assume anything. They may never have had sex, or their only sexual experiences could have been coercive ones, involving assault. They might be quite happy with their own sexuality and sex life but extremely uncomfortable discussing someone else's. When you bring up sex you may be pushing all sorts of buttons for them that they aren't prepared to have you push. They may also be anxious because you are their employer. While attendants often don't behave like employees, when they are put off guard (which is what talking about sex does to many of us) they may shift into a more submissive or defensive stance.

It isn't always best to launch right into asking how they feel about assisting with putting on a condom, or going to a strip club, or cleaning a vibrator. Of course you will know best, depending on the situation, but you may want to start a more general conversation about privacy and intimacy. If you think the attendant doesn't even see you as a sexual person, you could make it clear that you are, maybe by saying something like, "John is coming over and we'll probably have sex, so I'd like to have a bath first."

It may not always be easy or possible to talk with an attendant about getting assistance to express your sexuality. But that doesn't mean that exploring this is impossible. You will probably develop a sense from your working relationships with attendants as to who will be open to talking about this and who won't. You may be able to find other people who have been successful in negotiating this type of support from their attendants. You might be able to talk to them about what their experience was.

Unfortunately, some attendant service providers do not openly discuss this issue with staff or consumers, and assume that attendants and consumers will negotiate this without their involvement. As well, some attendants will not be open to even considering this as an extension of what they do in their jobs and, as a result, may have quite negative reactions to your desire to discuss or explore this with them. Be prepared for this. If you start making your wishes known, it is very possible that there are others who will also begin similar discussions.

Here are some practical suggestions from people who use attendant services:

• If you're thinking of having sex with someone else, start talking with the person you are interested in having sex with. If they are not knowledgeable about what attendant services mean (and what that might mean for you with regard to sex and sexuality), explain to them what you use your attendant for and the work relationship you have. Talk with this person about how the system works within your living situation. For example, if you have gender-specific attendants assisting with your personal care routine, how might your partner feel having either someone of the same sex or opposite sex assisting with positioning?

• Introduce your partner to your attendant and help them feel comfortable with each other. Talk to your partner about how she or he feels after meeting the attendant to see if they are comfortable with the process.

• Talk to your attendant about his or her comfort level in being able to provide support to you so that you can be sexual with yourself or with others. Not everyone is going to be cool with this, and this may be something they have never considered before. They might need to get more information. If possible, explore some resources for them so that they can find out about positive experiences people have had in using attendants.

• Talk to your attendant about what you're going to need them to do for you. Be as clear as you can about what type of assistance you need and what you do not need. Be open to talking about setting

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boundaries for yourself and the attendant. While the attendant is there to provide assistance, doing so may bring up personal concerns for them. They may want to discuss this with you or someone else. Explore with the attendant who else he or she might talk to about this. We know that talking openly about this kind of support is not something every attendant supports or is in favor of. Respect the attendant's need for privacy among other attendants (that is, don't pass on personal confidences to others).

Communicating with Health Care Professionals About Sex

/ was in for my annual physical checkup, everything was fine and in working order. The doctor asked me if I had any other concerns or problems. Spelling on my letter board, I said, "Yes, there is just one thing." He cleared his voice in a rather impatient manner, and said, "Okay, what is it?" I explained that I was having some anxieties of a sexual nature. He took off his glasses and said in a stern voice, "I am only responsible for your health and well-being. If you'd like I can refer you to a counselor to talk about that stuff." I was left with the question, Isn't my sexual health related to my well-being as well? I then quickly realized what would also help in my health and well- being was to get another doctor.

It can be very hard to bring up sexual issues with a doctor. They are often rushed and may not give any easy openings into a conversation like this. You are left to ask about it out of any context. Doctors have a widely variable level of knowledge about sex. Some medical schools offer sexuality courses as electives, or give one lecture on sexual dysfunction as part of gynecology or urology courses. Others have a much fuller sexuality curriculum.

Before you go to the doctor, think about what you would like to discuss. Because doctors tend to interrupt patients early on when they are trying to tell their concerns, it is best that you prepare a question that is only one or two sentences. Then you can fill in the details. It is also

helpful if you know the nonslang words for your sex organs and sexual functions (see chapter 3).

Doctors are required to keep communications with patients confidential, but that doesn't mean they always do this. It is a good idea to ask about confidentiality as a way to remind them that this is important to you. If you will have an attendant with you at the meeting, you can ask them to step outside while you are talking. If you will be using an

TIPS FROM AND FOR AAC USERS

For those of us who use augmentative or alternative ways to communicate (AAC), we offer a few tips that might be helpful when communicating important issues with our health care provider or others. One is to remember to bring our communication display or device to appointments. When communicating about issues related to our health or sexuality, it is helpful to have the vocabulary we need in our system or on our board to share our concerns. This includes words or pictures about body parts, feelings, medications, positioning, or possible questions.

It helps to have clear instructions on how we use our communication system. These instructions could be attached to the display or programmed into the device. The instructions should probably contain information about how we communicate and what we want speaking people to do when we are communicating with them. Some of us find it useful to have a "personal passport." This might contain information about how we communicate. For example, it might say, "I point to the picture I want to communicate using my index finger on my right hand." The passport can have instructions to the speaking person, such as, "Say the word out loud when I point to it, hold my display in front of me." We might include information about important things to know, like "Talk directly to me, not to the person who is with me, and give me time to communicate." Finally, the passport might contain key personal information; for example, "My name is..."or "In case of emergency call...."

One initiative called Speak Up has developed an excellent series of communication displays related to sexual health and pleasure. Speak Up is listed in the Sexuality: Disability-Specific Resources section of chapter 14.

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interpreter or communications facilitator, you can discuss confidentiality with them beforehand.

At some point you just have to jump in and ask your question. Your doctor might feel as uncomfortable about hearing it as you do saying it, so if the response you get seems odd, this doesn't mean there is something weird about you or your question. You can also ask your doctor how much he or she knows about sex and your condition.

Exercises

1. Talk to someone (or yourself, out loud) about the last sexual dream or fantasy you had.

2. Ask a couple of people you know what they learned about their bodies and sex when they were young. If you have both nondis-abled and disabled friends, do a comparison. Were they given words to use for penis, vagina, ass, anus, breasts, clitoris? It's a fascinating game to see how the words we're given (or not) are used to keep our behavior in line.

3. Make two lists of what you want out of sex. These lists aren't for anyone else, and you don't need to write them down. One list should have on it all the things you've ever fantasized about sexually. This may include things that you think are wrong or illegal, things you would never actually want to do in real life. The second list should be of things you would like to do, whether you've tried them before or not. Don't think about these lists as needing to be long, or needing to have any specific kind of behaviors on them (it's not a contest).

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we first figure out what gives us pleasure, what we find arousing, and from there we can begin to be creative about how we masturbate. Masturbation isn't just about genitals, or rubbing, or any of the other cliches we gather from TV, radio, the Internet, magazines, or pornography. It is solo sex. To emphasize this point many educators have dropped the clinical-sounding term masturbation and have replaced it with solo sex or self-pleasuring. We'll use all three alternately throughout this chapter. Things to keep in mind about masturbation:

• You don't need to be naked to masturbate.

• You don't need to have an orgasm for it to be masturbation.

• You don't need to have all your nerves working to masturbate.

• You don't need to be able to reach or touch your genitals to masturbate.

• You don't need to do anything physical to yourself to masturbate.

• Masturbation is not second best to anything.

• All you need to masturbate is a plan and the energy to carry it out.

We also have to get rid of the idea of solo sex as a milestone, a goal that must be accomplished. This may not be possible, or may be possible only with help, and can be hard to achieve.

/ would like to masturbate, but I've no one I feel comfortable with to ask for help.

Try not to add masturbation to the list of burdens in your life. Many people who cannot masturbate in the "traditional" ways end up feeling ashamed of it. If you are going to masturbate, do it for fun, relaxation, and emotional, psychological, and physical pleasure, not because you think you have to.

Masturbation has constituted 99.99 percent of my sex life. I never had a lover until 1995 and that didn't last long. I've been too embarrassed to ask for help. I can't use my hands at all, so I could use some help. When I was a teenager, I'd try to twist my body this way and that way so I could make my shorts tight. I'd lift my left

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knee, which is the only part of me that can move, and drop my thigh on my genitals. The pain turned me on terrifically. Now I can't lift my knee anymore. A friend once told me she was going to a sex toy store and did I want anything? I was dumbstruck. Why would I buy a sex toy if I couldn't use it? Or have a lover to help me use it?

If you acquired a disability later in life and masturbated one way before your disability, you may have to become willing to change your routine. Because masturbation is the first way most of us learn to be sexual, it often sticks as "the way" we get turned on, get aroused, and get off. In this way our masturbation routine can be a place to get stuck if we think there is only one way to do it. Luckily there's no age limit to learning new ways to masturbate.

Why Masturbate?

When I get off, I get to control the scene...who says and does what and when.

Many sex educators consider masturbation, however you practice it, to be the cornerstone of sexual health. Masturbation can be tangible proof that you can feel pleasure in your body or your mind and that you can be the instigator of that pleasure as well as in control of when and how the pleasure comes.

Self-pleasuring can be a political act that defies the idea that we get sexual pleasure only from certain kinds of sex. Self-pleasuring can also play a big role in improving body image. One of the hardest things about changing body image is combating all the negative messages we get about our bodies. "I look funny," "I'm too fat," "This part doesn't work right" are some thoughts that get in the way of our feeling good about ourselves. Negative messages can lead to hatred of our bodies. One of the ways to fight this is to start loving our bodies, as New Agey as this sounds ("love your body, use the force..."). Self-pleasuring is, literally, loving your body—telling it that it is worthy of pleasure, of positive attention, of a gentle (or rowdy) thought or touch.