The Ultimate Guide to Sex and Disability (4 page)

The coming-out process is ordinarily something that happens after much reflection, soul searching, and personal exploration. It isn't the end of a journey but rather a point where you are finally accepting a particular identity for yourself and taking the risk of sharing that identity with the important people in your world. You are boldly stating "This is who I am, here and now, and it's not worth it for me to pretend or 'pass' anymore."

The ways that mainstream heterosexual society forces people to pass (that is, pretend to be heterosexual in public) are similar to the ways in which nondisabled society marginalizes the rest of us. Mainstream, nondisabled society has very specific rules for living with a disability.

After my accident my friends rallied around and visited me in the hospital, sent flowers, all that stuff. After a while though, I think they just wanted me to get on with things; it was like the disability was yesterday's news. I had done the disabled thing, now I could just stop being so boring and drop it. It wasn't like I talked about it all the time, or ignored their needs, but they just wanted it to be a total nonissue, which it could not be, mainly because of access issues and stuff.

Coming out to others about your disability is, in part, about holding onto your right to take care of your own body and to maintain a close connection to it. Knowing when you get tired, realizing your limits, sensing when you're aroused by even the slightest physical cue—all are things that come with practice and are gifts that many others don't have. It's often assumed that disability creates a split between a person and their body because of the things they "lost." While this may happen to some, for many of us it's more true that learning to live with our disabilities brings us closer to our bodies.

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How I feel about my body greatly affects my sexuality and how I feel about my body is that it is great! I don't have a traditional body but I have one that I am intimate with and one that has given me many moments of pleasure. I love my body! I think of myself as sexy and, therefore, others do too. I accent the positive and deempha-size the negative. The only time I've had trouble with my image of my body is when I have been unfortunate enough to allow a jerk to impact the way I feel about myself; however, I've always rebounded from those moments of embarrassment, though sometimes it's taken a while to build the ego back up. Chronic pain sometimes makes it hard to love my body because it makes me hurt, but even then, I can usually find nice ways to treat myself and make the body feel good.

Our society tends to define people as single issues. So our disabilities may become who we are to some people, rather than just one aspect of our lives. Everything about us is blamed on or credited to the disability. Sexually, this can have devastating consequences. We may be viewed as "heroic angels" who are too good to have sex, or as helpless victims, unable to do anything, especially have good sex.

My disability is very visible, but I can cover up the physical aspects of my disability sitting on a stool or a regular chair. The fact that I try to cover up my disability shows I do feel insecure about it. When I am on my knees people tend to put two and two together and I get praise for my "courage." But sometimes I just want to hear, "you have a nice smile, I like your body, and man can you party." Hearing about my courage and inspirational ability to meet my challenges becomes repetitive. I guess I want my disability to be set upon the back burner. But most of the time people seem to place it in the front.

I think my disability affects my self-esteem. I am about to graduate from college and possibly go to law school, which is something that many people whether or not they are disabled never do, but with

all my achievements I still often feel as if other people don't really see those accomplishments because I am in a wheelchair.

It's all connected for me. I see myself as very sexual, and I think this makes me feel good about myself. My positive feelings about myself are pretty obvious, I think, so then other people see me as sexual and interesting and see my disability as part of that, and seeing all that in their attitudes, voice, actions makes me feel even sexier.

Taking Care of Ourselves

Our bodies are where self-esteem, desire, and sexuality come together. The more attention we pay to our needs, the better we are able to take care of ourselves. This can only have a positive impact on our sexuality.

When I was younger I really struggled with issues related to my disability sexuality, and especially incontinence. I remember having a relationship with someone who had never been with someone with a disability — it was new for both of us. I was so fearful about telling him that occasionally when I get sexually excited, I pee. I felt badly about my body and that I couldn't always "control" it. He kept telling me it was okay and that I didn't need to worry But it took a long time before I believed him. Years later I still catch myself struggling with this, even though I've had some successful relationships since then. You're just not sure how the other person is going to react even though you know that regardless of how they react, that fear still gets in the way.

I still run around some days, work too hard, get too upset at little things, all of which I know will lead to fatigue at the end of the day, which may trigger my pinched occipital nerve. Yet I persist. Until I'm willing to say that I need to take care of myself, that I can't do things either like I used to or like I see other people can, until I get

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to that point I just increase the chances that I'll have a flare-up of pain. It's okay to make a choice about that, to say to my self, 'Well, I really want to do this and I want to do it all-out, and tomorrow I'll pay for it." But to do all that because I "forgot" that I shouldn't is a different thing.

How do we begin to challenge all the messages that are out there about living with a disability and having sex, having a sexuality, just believing that we are 'hot'? Through the process of individual change, we can challenge beliefs and have the opportunity to see things in different ways. Making a personal inventory of those messages we have put into our own belief system is a good way to start. The more we have a chance to see how "ableist" messages have personally affected us, the more we are able to nurture our own inner resources, strengths, and values. This is not to say that the following strategies are easy (we know this from our own experiences), but with practice there will be opportunities to shift how we think about ourselves.

Exercises

1. Make a list of all the things you could say after the words "I am...." Consider writing them down or saying them out loud. Some of these things will be individual characteristics, such as "I am a belly dancer" or "I am an avid reader." For those that are not related directly to sexuality, think about whether they have an impact on who you are as a sexual being.

Make a second list of the groups you feel others have put you in. Think about the subtle and not so subtle ways other people's assumptions can impact the way you both think and feel about yourself. Then indicate which groups you feel you fit into, and add any that aren't on the list that you have made.

2. Make a list of the qualities that you value most about yourself and others. Now make a second list of qualities you wish you didn't have, and a third list of the things that people around you expect of

you. Think about people in your life whom you admire. In what ways do you think the qualities you have listed have contributed to their self-esteem?

3. Get in touch with the disability or chronic health-related organizations that are supposed to be serving your needs. It might be the local American Cancer Society chapter, or your nearest center for independent living. Most organizations have acknowledged that they can't address just one aspect of who you are and hope to effect real change or support. So call or write, get someone's attention. Ask them if they consider sexuality to be an important part of an individual's life. Do they think that there is a connection between how we feel about ourselves in general and how we feel about ourselves as sexual beings? If the answer is no, ask them why not. If the answer is maybe, or yes, ask them what the organization is doing to support people's right to explore that part of their lives. Do they have any books or films, do they offer any courses? They may conduct dozens of life skills courses on balancing a checkbook (which is admittedly important), but how many times have they given a course on how to meet someone if you want to date, or what to do if you just want to have sex with someone? You can take this exercise as far as you like. You're going to get plenty of silence on the other end; sometimes you'll get lectures from people obviously opposed to even speaking about sex. But occasionally you'll get someone who is genuinely interested, and thankful that you've called to raise the subject. The more people who do this, the closer to the surface the topic will get.

CHAPTER

Sexual Anatomy and Sexual Response

/ get the feeling people think that because I am in a chair there is just a blank space down there.

Underlying much of what is written about disability and sexuality is the idea of deficiency. These writings usually tell us about what we won't feel, what we can't do, and the ways we can make up for the fact that we aren't getting the "real thing." Despite what people actually experience, many of us still view sex as something that is the same for everybody considered "normal," and inferior for the rest of us. But every person needs to discover what sex is for them—how it feels, and what they respond to.

Yeah, sex is definitely different since I got injured. Now I use a wheelchair and I don't

always get erections when I want. Things are slower in some ways, but when I do have the chance to have sex I really like it, and figure it's probably different than it would be if I wasn't in a wheelchair. Like, there are parts of my body now that are so sensitive to touch and I can't believe how easily I get turned on by having my nipples and ears touched. So I don't think of it as bad, just different.

Constructing a sexual blueprint that maps the places on your body where you have more or less sexual sensation, as well as what your body looks like (inside and out), its textures and rhythms—leads to a healthier sexuality. In this chapter we propose a radically different way to approach our sexual anatomy and response, departing from the ways most books write about it.

We almost wrote this chapter without any description of what most people's genitalia look like, intending to leave it to you to discover what you look like. But we found three problems with this. To start with, you may not be able to see or feel some (or any) parts of your body. Second, with no descriptions or pictures, you don't have the opportunity to put names to the sexual parts of your body. This can make it hard to communicate with sexual partners, as well as with people to whom you might turn for advice. Third, many kids with disabilities who have the usual sexual anatomy grow up thinking that there is something different and unusual about the way they look sexually, primarily because they have picked up on the societal message that they are not sexual beings and will never become so. It can be empowering to realize that you probably do have everything that your friends have "down there." People who have differences in their sexual anatomy may be surprised at how many similarities there are. Your body may be different, in how it looks, functions, or feels, from the usual way things are, but in this book we won't use terms like normal and abnormal.

Even though my penis looks very different than other guys, it works fine. I had several operations when I was a kid, to "fix" how it looked and so that I could pee better. There is some scar tissue

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from that where I don't have much feeling, but I don't notice that during sex. When I was younger, I would have given anything to look normal. I still don't use the urinal, but always go into a stall so no one can see me. But now that I have a girlfriend who doesn't mind how it looks, what's important is that she and I both get pleasure from it.

Your disability is part of who you are. Your chronic fatigue, mobility limitation, or lower body paralysis is as much a part of your sexual self as your enviable upper body muscles, sweet tush, gorgeous breasts, or graceful hands. Your body is the raw material you get to work with. You might as well get acquainted with the whole package.

Barriers to Understanding Our Bodies and Our Sexuality

Those of us who have been living with our disabilities from birth or childhood have had a lifetime to get to know our bodies, but may have missed out on basic sexual health education. People new to living with a disability may have to discover what this means sexually. People with progressive illnesses may have to constantly adapt to changes in sexual functioning. Also, people whose genitalia look fairly standard will have a different perspective from those whose genitalia don't.

In addition to the negative beliefs many of us heard while growing up (sex is dirty, only bad people touch themselves, pleasure is suspect), anyone who has had prolonged contact with the health care system as a child has had their body treated as if it is a foreign object—something to be cleaned, prodded, exposed, or hurt, something that is the property of the people in the system. We can overcome this childhood training and learn more about how we feel, what excites us, what makes us feel good.