The Ultimate Guide to Sex and Disability by Miriam Kaufman Page A

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-

    COMMUNICATION • 75
    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