The Ultimate Guide to Sex and Disability

This book made available by the Internet Archive.

To the memory of Barbara Waxman Fiducia

Acknowledgments

First and foremost we want to thank all the people who participated in our survey. Their words guided the content of this book and gave it a spirit far beyond what we could have done ourselves. Thanks also go to our professional readers Sharon Vilcini, Ann Barrett, and Barry Siskind who waded through a much longer, more chaotic version of this book and made it leaner and more thoughtful.

The work of many colleagues (some of whom we have never met) has inspired us as we put this book together. Thanks in this regard to Michael Barrett, Linda Crabtree, Dominic Davies, Kath Duncan, Anne Finger, Dave Hingsburger, Paul Longmore, Susan Ludwig, Nancy Mairs, Linda Mona, Corbett OToole, Tuppy Owens, Kenneth Ray Stubbs, Mitch Tepper, and Rebecca Widom.

Special thanks to our friends and colleagues who helped out directly in countless ways: Anne Amitay, Rosemary Antze, Chloe Atkins, Roberta Benson, Jennifer Bator, Joani Blank, Viviana Cornejo, Athena Douris, Sarah Forbes-Roberts, Pat Israel, Jasmine Lefresne, Aruna Mitra, Robert Morgan, Caroline O'Reilly, Rebecca Pitcherack, Carol Queen, Anne Semans, Mary Sutherland, Cathy Winks, Hilde Zitzelsberger, the producers of "Sex TV," and the worker-owners of Come As You Are and Good Vibrations.

Finally, we have to thank Felice Newman and Frederique Delacoste from Cleis Press. They approached us to produce this book and showed infinite patience with three authors who have too many day jobs. We thank them for their enthusiasm, support, and their ongoing commitment to publish books that need to be published.

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that isn't aimed at a particular disability. While many of the issues in this book are unique to disability, the larger experience of trying to define one's own sexual life is not.

Much of the information in this book comes from our professional work, our interactions with colleagues and clients, and things that have been written in the past. A lot of it comes from our personal experiences with friends and lovers. But what made up the foundation of this book were the responses we got to a survey about sex that we distributed to people living with disabilities. While the other information we've collected is important and we hope it will be helpful, by far the most interesting and informative part of writing this book has been reading and incorporating the survey responses. Our highly unscientific survey was distributed via the Internet and also by telephone. We asked people twelve very open-ended questions about a variety of aspects of sexuality. The responses were amazing and wide-ranging, and those people who didn't like our questions told us so and made up their own instead.

The survey participants whose words enrich so much of this book have a great deal to teach people living with, and without, disabilities and chronic illnesses. Our respondents live with a wide range of mobility, sensory, environmental, developmental, cognitive, and psychiatric disabilities.

We hope this book will generate ideas for you, start conversations among the important people in your life, let you share in the wisdom of those who took our survey, and point you to the rich lode of practical information we found.

In writing this book we often struggled with language. There are three of us: One of us lives with a disability, one has a chronic condition, and the third is currently nondisabled. We decided to use the inclusive "we" when referring to people with disabilities. We see ourselves as people who struggle with our own issues of difference and who are working to identify with the challenges that our readers face every day. We wrote this book for anyone who is interested in sex. You don't have to have a sexual partner, or even be thinking about getting one. We haven't aimed it at those who are a particular gender, or have a particular sexual orientation, or live with a particular disability. Although most of the people

INTRODUCTION • XI

who read our book will identify themselves as living with a disability, or chronic pain or illness, we expect that nondisabled partners, parents, health care providers, other care providers, and teachers will be interested as well.

Because we know this book isn't the final word on sex and disability, we have compiled one of the most extensive collections ever of user-friendly resources on sexuality and disability. We list books, organizational contacts, and plenty of websites. While we don't discuss reproduction or pregnancy, you'll find resources in chapter 14 that can help you access information on these topics.

We have included exercises you can try at the end of many of the chapters. The exercises might allow some people to take a few moments to consider what they've read in the chapter and how it reflects their own life. In addition to working on them on your own, they may help you start talking about sexuality and disability with a friend, counselor, or someone else whom you trust in your life.

A little about us.... Cory is a founding member of Come As You Are, a worker-owned, cooperative sex toy store and website in Toronto, Canada (www.comeasyouare.com). The retail store is a fully accessible, disability-positive space. Cory has also worked as a sex educator in various disability and rehabilitation communities for the past nine years. As someone who is currently nondisabled, most of his work has been with other nondisabled professionals, teaching them to be more comfortable talking about sexuality. His work has also focused on adapting sex toys to meet various needs. Cory has a master's degree in psychology and has conducted academic research on sexuality and disability.

Fran is a queer gal living with a mobility disability. She has been working in the areas of sexuality and disability for a number of years, mostly centered on training and educating of service providers about issues that impact persons living with disabilities, and sexuality and sexual health. Fran has cofacilitated workshops for women living with disabilities on aspects of body image, sexuality, and disability. She is a contributor to "dis-n-tangle," a 'zine for lesbian/gay/bisexual/transgendered/transsexual folks living with disabilities and our allies. Previously, Fran was the coordinator of SexAbility, a program of Planned Parenthood in Toronto (in

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partnership with the Anne Johnston Health Station). This program offers sexual health information and workshops to youth living with disabilities.

Miriam is a pediatrician and specialist in Adolescent Medicine at The Hospital for Sick Children in Toronto, as well as an associate professor at the University of Toronto. Miriam has a chronic endocrine condition but is not disabled by it. She got interested in sex education while a nursing student at Duke University, and has been involved in the field ever since. A major part of Miriam's work is in public education. For the past three years she wrote a weekly teen advice column in a daily newspaper and has written two books, edited one, and coauthored another. Her favorite (alas, out of print) is Easy for You to Say: Q & As for Teens Living with Chronic Illness or Disability She is a lesbian who lives with her partner of more than twenty-five years and their two teenaged children.

Fran and Cory met almost eight years ago through sex education work they were doing in the community. Miriam then met the two of them while presenting a workshop for young people with spina bifida. Writing this book has given the three of us a wonderful opportunity to become friends.

Sexual independence is an extremely potent form of empowerment. It is our belief (and our personal experience) that by exploring our sexuality, by deciding that we are worthy of feeling pleasure and of realizing our possibilities as sexual beings, we can change other parts of our lives as well. We hope that this book will lead to positive changes in the lives of you, our readers, and in turn will create a ripple effect, building a movement of sexual liberation for those of us living with disabilities and chronic conditions; for our allies, lovers, and partners; and, most importantly, for ourselves.

Miriam Kaufman, M.D.

Cory Silverberg

Fran Odette

Toronto, September 2003

Myth #1: People living with disabilities and chronic illnesses are not sexual.

Once or twice a year, a journalist "discovers" the idea of sexuality and disability and decides it will make a great human interest story. Other than this, we rarely find media depictions of people living with disabilities or chronic illnesses as having sex lives. And if we do, it is usually presented as a rare and incredible thing.

We think this happens for two reasons. First is the belief of many nondisabled people that they themselves will never become disabled. By distancing themselves from all things related to disability, they manage to stay in denial. Second is the fact that many nondisabled people view people living with disabilities as essentially different from them. They think we are helpless (because we may need help) and therefore are like children, who are not acknowledged to be sexual. You may have sixty years' life experience, with the body, brain, temperament, and libido of an adult, but if you can't feed yourself, or need help wiping your ass, or getting in and out of the car, you are considered a child. Thus they deny our sexualities.

In North American culture, self-sufficiency is highly prized, defined as the ability to do everything for yourself—and still have energy left over to help those poor unfortunates who are not as self-sufficient as you! It is not defined as the ability to work creatively and cooperatively with others.

Myth #2: People living with disabilities and chronic illnesses are not desirable.

We've all been fed the message that sex is for the young and beautiful. If you don't resemble a twenty-three-year-old supermodel, no one will want you. Likewise, if you cannot produce multiple G-spot orgasms on cue or perform like a stud, you're not worth going to bed with.

This standard exists for us all, and harms us all. Even worse is the

MYTHS ABOUT DISABILITY AND SEXUALITY

notion that if you require some help with assistive devices, or a little extra patience, communication, and emotional support before you can enjoy giving and receiving sexual pleasure, you're a burden. Who would want you?

Myth #3: Sex must be spontaneous.

We're taught that sex is supposed to be spontaneous, something that just comes naturally (like "true love"). This belief is damaging to everyone, but is a real problem for people living with disabilities, because any amount of planning makes sex not spontaneous. Believing in this myth pretty much ensures a lousy sex life.

While sex has many meanings, at its heart sex is a process of communication. Whether we are flirting from across a crowded room, giving someone head for the first time, or making love while listening to a piece of music that totally turns us on, being sexual is being in contact with ourselves and our surroundings. The idea that this process can happen without thinking, talking, or planning is ridiculous.

Maybe we are willing to buy into the myth of sexual spontaneity because talking about our desires is difficult. It's risky, and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.

Myth #4: People who live with disabilities and chronic illnesses can't have "real" sex.

Watch any one of the thousands of mainstream porn films (or even regular films with sex scenes) released each year and you'll get some idea of how sex is "supposed" to work. "Real" sex progresses from light activities like kissing to the "real" thing, penis-in-vagina intercourse, to simultaneous orgasm in ten minutes or less. You should also be able to have sex in a variety of different positions all in the same night. Everything we do sexually is supposed to progress toward that goal, and none of it is as important as the result itself. Thus "foreplay" is nothing more than a

prelude to the main event. Oral sex is hot, but it's still not as good as the "real" thing.

According to this way of thinking, masturbation doesn't count as sex. Only people who can't get laid masturbate. Of course, studies (not to mention our own experience!) tell us this is not true. People of all genders and sexual orientations, whether single, partnered, or multipartnered, masturbate! Some of us even masturbate with our partners.

Most of us are raised with at least a few negative messages about pleasing ourselves sexually, one of which is that orgasms experienced alone aren't as fulfilling as those had with a partner. Unfortunately, the taboo against self-pleasure is deeply ingrained in us. And this taboo flares to a fevered pitch if someone needs help to get off on their own.

So only intercourse leading to orgasm is considered "real sex," and within that idea lies a belief that no one living with a disability is capable of having intercourse. The truth is that the majority of us can have intercourse, and those of us who can't, or choose not to, can still have real sex.

Myth #5: People living with disabilities and chronic illnesses are pathetic choices for partners.

This reveals a deep bias: If you live with a disability or serious illness, you must be a pitiable creature, and if I feel so poorly about you, you must feel worse about yourself. And why would I want to choose a lover with such a lousy self-image?

The even more dangerous underlying idea is that if you live with a disability, whatever you happen to feel about yourself or think about the world on a particular day must be related to your disability. If you're a real complainer who likes to kvetch and make everyone's life miserable, it surely is because you have a disability. On the other hand, if you are always cheerful, looking on the positive side of things, that too must be indicative of what a trouper you are, to be happy in spite of living such a terrible existence. Of course, we all have good days and bad days. But

MYTHS ABOUT DISABILITY AND SEXUALITY • 5

when you live with a visible disability or chronic illness, whatever you are on a given day is believed to be a result of your condition.

Related to this is the deeply disturbing idea that living with a disability is a life not worth living. We're taught to feel sorry for anyone who cannot achieve "good" health (basically, the absence of any condition that makes you different from anyone else). If we believe that people who live with disabilities are helpless, powerless, unnatural burdens, then few options are open to us, and none of them involve being in a satisfying sexual relationship.

When I was In my twenties, I got engaged to a nondisabled guy. My family freaked because they couldn't understand what this guy saw in me and thought that whatever he saw in me wouldn't last. My family felt that being with me would be a novelty and eventually the novelty would wear off and he would lose interest in me because how can someone like me be a good "wife" to him... especially sexually?

Myth #6: People living with disabilities and chronic illnesses have more important things than sex to worry about.

Who says sex isn't important? Well, just about everyone in a position to teach us about sex manages to subtly convey the message that sex is a frivolous pastime, certainly not something responsible citizens need, unless we're talking about the serious business of procreation.

The point is made again and again that if you live with a disability or chronic illness you've got more important things to deal with. Sex is a luxury you simply can't afford. This is also tied into the idea that people living with disabilities are childlike and need to be told how to prioritize their lives. This attitude is held by many nondisabled people, and even certain disability-rights activists claim that talking about our individual issues is bad because it "fragments the cause."