The Ultimate Guide to Sex and Disability (11 page)

Privacy

Another barrier to communicating about sex is privacy. Most of us have been taught that sexuality is a private matter. This can be another trap, because it leads to the idea that if you don't have privacy you can't have sex. Later on in this chapter we offer some tips on communicating about sex with little or no privacy. Privacy is hard to find, particularly for people who are living with their parents, in a group home, or in other insti-

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tutional settings. But there are some private places we can have for ourselves, the most obvious being our mind.

/ remember clearly the moment (I was sixteen years old) when I finally realized that I had a whole fantasy life that was completely unrelated to my outside life, that it was a good thing, a sign that I had a healthy and active mind. I live in many worlds, some of them with complete story lines, and I can do all kinds of things in my fantasy worlds. For a while I think I worried that my parents could read my mind, but knowing that no one can do that gives me a huge amount of freedom.

Often we're told that an active fantasy life is something to be ashamed of. It's childish, we're told, and fantasy is only for people who are afraid to experience reality. But fantasy is not childish, and our fantasy life is a wonderful, private world. It will be the only private space that some people ever get. If you have a partner, it is up to you to decide whether to invite them in, and into which parts of you and your fantasy world. Making time for yourself, then, and clearing your head of other things to make time to think about sex, can be an important tactic in dealing with a lack of privacy.

Blaming the Disability

Having something to blame for your communications problems can become a barrier because then you don't have to work to change them. When nondisabled people get into a relationship and quickly find they don't know how to communicate about sex, they don't really know where to turn for someone to blame. Often they say they work too much, maybe one of them has a drug problem, maybe it's the kids, or the mortgage, or maybe it's just that they are from two different planets (which is the stupidest pop psychology of them all). The blame never gets put where it should, squarely between the two of them and their inability to communicate with each other. And because it's all about blame and not about solutions, often they don't even realize that

communication is something you can learn to do better. It's not about our "nature." It's about learning how to communicate (which means both giving and receiving information). In a relationship where one or both people has a disability, there's the perfect scapegoat. Just as disability is often considered the cause of all our other personality characteristics ("she's such a brave quad!/' "he's such a jerk, but I guess I'd be the same way if I was blind"), it can quickly become the excuse for things going poorly in a relationship. To have healthy communication, it is crucial to be aware of when the disability is being used as an excuse not to communicate or as justification for poor communication. Whether the relationship has one or two people who identify as disabled, usually both people use the disability excuse at one time or another. This can be very tricky because it is unlikely that a sensitive nondisabled partner will call you on using your disability as an excuse, as they will probably feel like they have no right. We all make excuses sometimes, and we need to try not to hide behind the disability, even though we may have learned that this can be a useful survival tool. Disabilities can sometimes result in communication problems merely because of their own dynamics. Fatigue and pain in particular can make a sustained communication effort difficult. Being in a relationship with someone who hasn't yet learned to easily understand how you speak also poses some challenges.

Confusing Needs, Desires, and Requirements

Sometimes we need to separate communication about the sexual aspects of relationships from other kinds of communication, or these discussions can get lost among other relationship stuff. We all tend to shy away from talking about sex, and a preoccupation with other aspects of a relationship can help us avoid the topic. This isn't great for any sexual relationship, but it really doesn't work if communication is a requirement of having sex. If we need to tell a partner about positions, or if we require assistance undressing, we must communicate. Not doing so means not having sex with others at all, having unsafe sex with other people, or having lousy sex with someone.

When I'm having a date with my partner and my attendant isn't here it's always like, "I need this, I need that." Sometimes I feel really demanding, so then maybe I'm kind of shy about saying, "I need you to touch me, I need to touch you."

One way we often let our sexuality get muddled with other aspects of our lives is when we confuse daily needs with sexual needs and desires. Many people who are in relationships, and whose partners help them with some aspect of care, talk about how difficult it is to be sexual with someone who just tied your shoe laces, or wiped food off your face. Why is it supposed to be sexy to watch a Hollywood movie where a woman is wiping cream off a man's face and yet it's the opposite of sexy when our partner removes crumbs from our beard because we can't? Is it about power? Freedom? Control? Maybe it's only sexy when unrealis-tically good-looking people do it. Maybe it's about our inability to be in more than one role at one time ("don't try to flirt with me now, because right now I'm 'taking care of your needs' ").

When some needs are considered more important than others, a hierarchy can be created in a relationship. There may be an unspoken rule that it's not okay to flirt with your partner while they are doing the dishes or making the bed. The need for both partners to flirt, to be playful, becomes secondary to the daily living stuff. It can also happen that help with dressing, answering the phone, running for a cab, or cooking become the only way one partner can meet the other's needs. We may think that, because we need to ask a partner for help getting dressed, we shouldn't ask them to be more open about what turns them on. Letting our partners off the hook from the responsibility to create an honest sexual relationship because they help with dressing or other things has a negative impact on the relationship. Note the difference between your asking for help with something and wanting to engage in a two-way conversation about what's happening between yourself and your partner.

/ know that there have been times when I've been in a relationship with nondisabled lovers and I've not always been able to talk to them openly about how I'm feeling because they're providing some

kind of support outside of the sexual relationship. It feels like that relationship gets put into different compartments depending on what is happening at that time. I feel at times that I might be burdening them with having them attend to one more thing. It doesn't feel good when I get into that space because then we both lose out on having an honest discussion, and also I might be feeling horny and then the moment is lost because they're doing something else for me.

In any relationship there is interdependence. The balance can shift from day to day, but there are always things that each person gets, or needs to get from the other. Too often, in a relationship between someone living with a disability and a nondisabled partner, the disabled person is perceived as being dependent on the other, yet the ways in which the nondisabled person is dependent are seldom acknowledged. Our needs can come to be seen as overwhelming while our partners' demands are hidden or viewed as minimal, or are even addressed elsewhere, outside the relationship.

Creating Positive Communication

Good communication has to start with you. We've said this before and we're saying it again because it's so important. In most sex manuals, communication is written about as if it is something that we can isolate from the relationship as a whole. But it is impossible to examine the issue of communicating with a lover without looking at the relationship in general. Working on your sexuality—exploring, asking questions, moving forward—invariably means working on other aspects of your life.

Communicating with a potential or current partner about sex has taken a lot of practice, and I think is difficult for TABs as well! As a young woman I was so embarrassed about my artificial leg that I couldn't talk about it at all — just hoped they'd already noticed or something and used to dread the moment I would take it off — urrgghhh...! still cringe, remembering. But these days I've become very forthright and have come to the conclusion that if my prospective lover can't handle HEARING about what works for me,

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then they won't handle DOING it either. Of course I like to work up to this, not blurt it all out on first meeting a potential partner, but definitely while fooling around with each other's bodies, I like to talk about both my body's peculiarities, and the things my body enjoys. Boldness is best.

Many of the people who filled out our survey told us that living with a disability has enhanced their sexual communication. Disability can allow us the opportunity for creativity and the chance to see ourselves as being different from the impossible role model. In this way disability can become a catalyst for a kind of change and growth that nondisabled people usually can't imagine.

It has made me creative and adaptable. Many nondisabled people have very boring sex lives. Mine is a long ways from boring. Also, communications in general are better because of having to communicate about my disability.

I guess that [communication] has enhanced [my sex life] because I pay attention to what feels good for me and my partner. I have learned several secrets to pleasing a man by asking questions and reacting to the answers.

They say sex is a lot about communication. If this is true, my disability does force me to talk to my partners much more than I would, left to my own devices. I have to talk about what we're going to do, what needs to happen in order to do it, what I can and can't do. So there's little possibility of anonymous sex.

Boundaries

By boundaries we mean defining where you begin and end. What your needs, desires, and fears are...and what they aren't. If someone who makes jokes when they feel nervous isn't aware that they do this, they might find themselves in a situation where a friend feels they were being made fun of. The unaware person may see their friend as too sensitive,

or as misinterpreting a comment. The person who is aware that they do this will realize that their nervousness contributed to this situation, and be able to take some responsibility. This may seem like an obvious example, but it's important to remember that this happens with disability issues all the time.

One benefit to knowing your own boundaries is that it can help you notice when other people's issues are being foisted onto you. Take the following example:

Jack and Richard have been dating for about four months. Their relationship was sexual from the beginning. Richard lives with chronic back pain that usually takes him out of commission one or two days a week. Jack is nondisabled, and has been complaining lately that Richard isn't as affectionate as he used to be, and Jack is questioning Richard's interest.

It may sound as though Jack is unsympathetic to Richard's pain. He can't understand the way chronic pain can affect almost every aspect of life. Maybe, Jack thinks, Richard's pain is getting worse because he is unhappy with the relationship. Or maybe it isn't his pain at all, but Richard is really just pulling away from Jack.

Another interpretation is that Jack is understanding. That he doesn't expect Richard to be able to jump up and hug him every time he walks through the door. But that after repeated attempts to get Richard to talk about his feelings about the relationship, or about his chronic pain, Jack is now getting tired of trying. Maybe Richard isn't communicating at all with Jack.

Because we don't have more information, we could interpret this scenario many ways. But when there is poor communication, the people in the relationship also don't have all the information they need. Whenever we have to fill in the blanks of how the other person feels, we're in trouble because we usually fill in those blanks with our own issues. One of the great benefits of clarifying our boundaries and knowing what we want is that we can clearly understand at least half the story. A result of good boundaries is that you can begin to share the responsibility for good communication. Communication goes in both directions and should not be the responsibility of just one person.

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When Do I Talk About My Disability?

/ had decided that the sexual side of my life was over and had resigned myself to that. Now, at sixty-four, I am in love for the first time. I met the man on the Internet in a "chatroom" three years ago.... Before him, I'd indulged in cyber affairs with a number of men. At first I did not tell them I was disabled as I didn't plan to ever meet them. That got too complicated. Finally I came out of the closet This is before I had actually met my future love in person. I sent an email to my chat friends, telling them. The email response from my future lover was "... and your point is...?" I almost fell in love with him right then.

There are at least two issues to think about related to the question of talking about disability. First, what do you want to say about your disability and second, when do you want to say it. People living with disabilities are invariably put in the position of being "The Ambassadors of Disability." Because nondisabled people have so many hang-ups about disability and so little information, if we choose to have sex with non-disabled people we do much of the initiating of conversations. That doesn't mean that we should disclose more information than we feel comfortable with. We aren't required to tell our entire medical history or the story of our life to someone we are going to be sexual with. The information we give should be based on what we both want and need them to know so that we can have good and safe sex with them.

There's also the question of timing disability information. When to tell? As is our constant refrain, there is no right answer here. The decision is yours. Consider some of the following situations.

Nick was in a car accident two years ago. His pelvis was broken badly and he had injuries to his bladder. He now catheterizes regularly. Tanya met Nick at a party and asked him out on a date. They've gone out a couple of times and she has been flirting with him. She goes over to his apartment to watch a movie and asks if she can spend the night. Nick hasn't told her anything about his disability.

Pedro has been blind since birth. He split up with his girlfriend last year and is now looking for a new relationship. He hasn't met anyone he is really interested in through friends or activities, so he is thinking of placing an ad in the personals section of the paper. He isn't sure if he should mention his disability.

Cynthia has cerebral palsy and uses a Bliss board to communicate. She lives in a group home. She really likes Brad (who also lives in the home). When they get a chance, they make out, but they are not supposed to and the workers rarely leave them alone. She has masturbated before on her own and she likes clitoral stimulation. She has tried vaginal penetration but it hurt. She wants to tell Brad that she wants to have sex with him, but not intercourse. But she doesn't have the Bliss vocabulary she needs to tell him this, and doesn't know how to spell it all. Also, she is worried about what Brad will think about this—maybe he won't want to have sex with her without intercourse.

Michele has had cybersex with a number of people, writing hot emails back and forth and in chatrooms. She has maintained a correspondence with one person who now wants to meet her in person. She likes her, but thinks maybe she won't meet her because she doesn't know how to tell her that she has a colostomy.

There are no absolute rules for disclosure. Rob Kocur, a quad for the past eighteen years, wrote an article in New Mobility about personal ads. He conducted an experiment, placing two ads in his local paper. In the first ad he did not disclose his disability and in the second ad he did. He got more responses to the first ad. At first he suggests that people living with disabilities not disclose because it would drastically decrease the number of responses. Leaving the disability out at least gives you the chance on the phone of being a person first, letting them communicate with you without all their baggage about disability. But some people are fiercely proud of their disability and don't want to hide it. For others the rejection after rapport has been established is more disappointing than an initial rejection because of the word disability in the ad. As Kocur concludes, "why not see the disability as a tool for weeding out those people who don't really belong in your life, anyway?"