The Ultimate Guide to Sex and Disability (13 page)

When two people have infrequent privacy, they can use some of this time together to develop a code, so that in more public encounters they can arrange meetings, say what they would like to do, or express feelings. This is pretty limited, as you have to be able to remember all the codes. When using words or signs, try linking them to familiar things. The name of something you hate can be the code for feeling angry, the name of a sexy star or a TV show could mean you are thinking about having sex.

If you can write, then passing notes is another option, although you have to be careful to dispose of them so they won't be read by other people. People are less likely to go through bathroom garbage than other garbage, so throwing out ripped-up notes in the bathroom is one possibility.

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Communicating About Pain

/ try to let my partner know what I like. It is hard because sometimes I can handle something, and other times that same thing is impossible for me to handle.

Pain, whether you have it all the time or it comes and goes, can be devastating to your sexuality. It is difficult to try to explain major pain, the sense of urgency it causes, and its aftereffects to someone who has never felt it.

There is often a spoken or unspoken belief that everyone gets what they deserve and that pain is something that is deserved, imagined, or not all that bad. When people who don't have pain believe this, then they feel protected, knowing that it can't happen to them. So they won't be very open to understanding pain.

Rather than trying to explain the pain well enough so that the other person will understand it (this is close to impossible), it is often better to talk about the effects it has. Pain may interfere with our feeling we're a sexual person, as it may make us feel not "at home" in our bodies, make it hard for us to feel sexy, make it difficult for us to reach out physically or emotionally, and sap our energy. Pain may be predictable, with times of the day that are better than others, or things that can lead to temporary relief. Sex itself can also cause pain, or make it worse.

It has to be clear to both partners that the person experiencing the pain or limitation because of a disability is the one who knows best. We must say when something hurts, and if we don't then things are fine. This is a big commitment from both sides: to be honest about what we are feeling, and to believe the messages we are getting. Guilt about causing pain should be discussed.

You need to expect the unexpected. What sends us into fits of ecstasy one week can cause extreme pain the next. Communicating "in the moment" is essential. If verbal communication is difficult, then clear signals are crucial. Here we're borrowing from the world of S/M with its "safewords." Establishing signals for yes, no, more, less, and stop can make communicating during sex play much easier. Use of signals can

be useful even for people who are verbal. For more aspects of S/M play that relate to dealing with pain see chapter 11.

Meeting People

At twenty-six I have discovered that dancing on my knees and flirting with other men is fun. I get into most gay bars by getting other men to assist me up the stairs with my chair when possible. Or if I go to a nightclub I just stay in one spot upstairs dancing on my knees. My favorite line is, "I am faking this disability for the view/' I am a gay male and I find that accessibility is an issue for going to dance clubs and bars. In the past I had found that in some dance clubs I was kicked off the dance floor for taking up too much space. Or I was told it is too dangerous for me to dance on my knees. I was even called a horny geriatric in the local gay newspaper. I believe the exact words were: 'What I want to know is who is the horny geriatric who conveniently parks his able walker in front of the club." I was twenty-three at the time. I informed the newspaper that I was definitely not a horny geriatric. Even if I was, what would be wrong with that? It is getting better as I keep on getting out.

Friends, family and partners have all been supportive, but most care services are still designed to function as if the disabled are "invalid" or "shut-in." For example, wheelchair repair services are notoriously slow and ineffectual and — even in urban areas — there are limited transportation services. I must often limit my socializing at clubs, or even private parties, to avoid being stranded by missing the last bus.

Work in the media! No, seriously, you have to be out there, in the real world, meeting a lot of people, getting used to being stared at and staring 'em down. My disabled friends who spend all their time going to and from small workplaces and not getting out and about, get very little action. It really helps to feel confident and bold.

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A FEW TIPS ON CHOOSING PARTNERS

Some people are attracted to potential partners because they seem dangerous. The risk-taking element can be exciting at first. But in the long run, dangerous partners can be dangerous both mentally and physically.

While there are absolutely no foolproof ways to choose a partner, here are some things to consider:

• What is their track record? Ask about previous relationships, how they are described, how they ended. You can also find out a lot by how a person's friends describe them.

• While you can't judge a person by their family, asking about family can sometimes give you a glimpse into the way they were raised, and how they might do it differently (if you're looking for a potential long-term partner this could be important).

• Ask yourself, would you trust this person in other ways? Would you buy a used car from them? Do their friends seem to trust them?

• Are they looking for the same things you are? If you're seeking a fast and clean relationship based solely on hot sex, but they're scoping out baby strollers and table settings, you may want to back off.

• What are their boundaries like? Usually if someone professes their undying love for you at the end of a first date, well, there may be issues worth looking into there.

Over and over in response to our survey people wrote about the main problem's being not how to have sex, but whom to have sex with. Lack of available partners, not a lack of creative solutions for what to do with those partners, is the main issue for many people. Where to meet people is a huge obstacle, and any suggestions may seem like pat answers. Standard advice (smile, be more friendly, look more outgoing, try to make an effort) does not acknowledge that many people are afraid to get involved with a disabled person. Sometimes the ideas and suggestions may be useful, but when they are couched in terms of our inadequacy they defeat the purpose.

Some of us spent our younger years avoiding other people living with disabilities, not wanting to be typecast, feeling that if we had a

disabled friend then people would think we only want disabled friends. We may have missed out on opportunities for some great friendships. When we get involved with someone else with a disability, there can be both advantages and pitfalls. They may already "speak the same language," that is, understand about disability issues, not need to be educated about things. On the other hand, we can't assume that they know anything about our disability. We have to be careful not to get into competition about who is the most disabled. But the chances are higher that their living space will be accessible. There may be some similarities of experiences or issues that won't come from having a nondisabled lover.

Most of the lovers I have had are people who have disabilities. It has been my experience that because both of us are coming to the relationship from a more equal ground, that there are fewer power imbalances that play themselves out. We both know what is possible sexually and what isn't and, where possible, talk together openly about how to make it work for both of us. One lover was a man who was very open to talking to me about my concerns and fears. Many of my fears were about what I was able to do to satisfy him as well as other things that were related to my disability which might have "turned off" other lovers, such as maybe having an accident in bed or seeing a body that wasn't like Demi Moore. He was very sensitive and caring about how I felt and also was able to relate to his own earlier sexual experiences and feeling uncertain. Our sexual relationship was wonderful for the time it lasted and was very creative in ways that I wonder would be possible with a nondisabled lover who didn't have firsthand experience with disability

I have a lot of disabilities — that means that I depend on attendant services for a great deal of my care. When considering whether I would date someone with a disability, the answer is "no." I can't imagine that as a possibility, especially if both of us needed attendant services. It would just be too weird. I want someone who is able-bodied and with whom I can have a relationship where the

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attendants aren't always around doing stuff for me. Not that I want my able-bodied lover to be my attendant, but just knowing that if in a pinch they were able to do something, like putting me to bed if we came back late from a date, then I wouldn't worry and would feel like my relationship with them was mine and not under scrutiny by others.

Partners may worry that our disabilities make us more fragile, and therefore might be reluctant to engage in certain activities or positions. They need to learn to trust us and our judgment about what is okay and what isn't. Sometimes our perceived problems can be an excuse not to do something when there is really another reason.

We also make assumptions about what partners might want or what they think. We might avoid suggesting something that we think wouldn't be that exciting for them. We may assume that they need to be protected from seeing our scars or dealing with ostomy bags or assistive devices. We need to check out these ideas and find out what our partners actually feel.

Well, there are sexual activities that I don't participate in anymore. Mostly because I can't. I miss those activities a great deal and this impacts my self-esteem. It is much more difficult for me to help my partner to orgasm than it used to be. Now, I often wonder why would anyone want to have sex with me. My sex life mainly consists of my partner masturbating me and then masturbating herself with verbal encouragement from me. She has never wanted sex as much as I. So, sometimes (in fact, most times) she just masturbates me. I have noticed that we don't have sex as often as we used to, which worries me. I wonder whether the sex isn't any good anymore. This has been causing friction in our relationship in the last three or four years.

Uncertainty has contributed a lot of insecurity and a concomitant lessening of trust has sometimes created a less conducive atmos-

phere for sexual activities and trust — particularly in initiating sex. Fear of hurting (irrational) or exhausting me has also had its impact.

I'm not as physical. We now have to make love in ways so as to not hurt me. My partner is a very passionate lover and sometimes I think she has to hold back because she's afraid she might hurt me. Nothing can take the pleasure out of sex like a leg cramp. One of my favorite positions used to be on my knees but that is no longer an option. As my disease progresses we continue to experiment with new positions and sometimes find new and exciting ways to pleasure each other.

My current partner has also been encouraging, though we have our problems. She wants to have sex with me, and loves being eaten, but she often won't let me really do what I want to do because she's afraid of hurting me. She's constantly worrying about my wrist and finger pain if I fist her, even though that hurts a lot less than reaching inside her with a finger or two when she's bumping against my thigh. Since it hurts to hold myself up, I want her to be on top when I eat her, but sometimes she won't lower herself enough for me to really kiss her everywhere I want to or to get my tongue inside her. The best position for me, with her torso straight up, sitting on her ankles just over my mouth, we've only done once or twice because she's afraid of suffocating me. And though I want her to fuck me with our strap-on, it usually slips out if I'm on my back, and she's afraid that I'll hurt myself trying to stay up on my hands and knees. Sometimes we pile pillows under me, but I've noticed that she worries about my pain least when she's in a position that she likes, not a position that I like. I'm sure she's not consciously doing it, but she seems to be able to throw her concerns to the wind when she's having a great time, but not when I am. That makes me wonder whether the most important issue really is accommodating my disability or if it's accommodating her desire.

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Get Involved and Get Outside

Difficult public transit, inaccessible buildings, and unwelcoming groups might make going out seem like more trouble than it's worth. But staying in leads to a downward spiral of isolation and loneliness. Getting involved in something politically meaningful is a safe and easy way to start getting out. Whether it's related to disability, gender, or something more overtly political, it's a chance to meet people who might enjoy doing other things together.

Other activities that are good for meeting people are volunteer work, musical groups, or hobby-related organizations.

Personal Ads and Dating Services

Many people have met partners through ads and dating services, though many others have been disappointed. Ads are often inexpensive and writing one is a good way to clarify what you are looking for. Look at other ads to get an idea of what people are looking for in different papers. Some papers have ads geared toward people looking just for sex, others more for relationships. When writing an ad, be honest. Don't say you are younger or older, taller or thinner, than you are. Don't pretend an interest or income you don't have. Remember when reading ads that not everyone is honest. When meeting someone through an ad, play it safe. Don't give your address. Arrange to meet in a public place at a time when lots of people will be around. You may even want to ask for references, friends who can vouch for the person.

This dating service promised lots of dates, and I got them, but boy, most of the people they hooked me up with seemed to be the bottom of the barrel. We had nothing in common. A few of them weren't even looking for a relationship. They just wanted sex. I don't know if everyone who came to them was a loser or if they hooked me up with the losers because I have a disability and they thought that was all I deserved.