Personally, I think The Ultimate Guide to Sex and Disability (Cleis Press) should be made required reading in med school. It should also be given out with the little pamphlets describing ones condition that one gets in the doctors office upon diagnosis. It would be a lot more useful.
This isn’t the first time someone has tried to write a guide on sex and disability. I’ve seen, and even owned, other attempts. They’ve all been well-intentioned but incomplete, mostly focused on the author’s personal experience with disability, but no two disabilities are the same. Two people can even experience the same disability in different ways. Books by single authors that focus on their own type of impairment aren’t always helpful to those whose impairments or experiences are different.
The Ultimate Guide to Sex and Disability is the work of three people. Miriam Kaufman is a physician, a pediatrician who specializes in adolescent medicine and who lives with a non-disabling chronic illness. Cory Silverberg is the About.com guide to sexuality, a certified sex educator, and a founding member of Come As You Are. Fran Odette is a disabled queer activist and educator on issues regarding disability in women.
Between the three of them, Kaufman, Silverberg and Odette have done the most thorough job I’ve ever seen of covering the physical and emotional logistics of navigating sexual life with a disability, a not-inconsiderable task. Yup, we like sex. Some of us even like colorful sex. That doesn’t change.
What changes is how we perceive ourselves and how we’re perceived by society as a whole. It never occurs to most people that a woman in a wheelchair might be a good top, or that it’s okay to top a quadriplegic man. For the most part, people don’t even think it’s okay to have sex with us at all, much less bring out the restraints, and frankly it’s long past time someone dealt decisively with this issue.
Here’s why. According to an article in the New York Times last year about one third of Americans in their twenties today will experience some kind of disability while they are of working age, most likely due to chronic illness. Once we reach retirement, that figure rises to 100%, excepting those who die in good health. Even the most active seniors experience physical impairment, and the older we get, the more issues we’re likely to have.
It’s one of those things we don’t think about until it’s too late, and then we find out that so many people also prefer not to think about it that we have very little to work with. How do you use a vibrator when you have little mobility or sensation in your hands? How do you put a condom on when you have an indwelling catheter? How do you have sex when penetration is impossible?
It can all be done, and this book shows you how. It also offers suggestions for the non-physical side of sex, which is arguably the more complex. The further someone deviates from the accepted notions of normal, the more important it is to communicate clearly, and the more difficult that communication becomes. It’s so difficult, in fact, that it doesn’t always work out well no matter what you say or do, but at least there’s some guidance here that can help you do the best you can.
Perhaps the thing I like best about this book is that it isn’t a feel-good piece. The disabled can find themselves more crippled by self-esteem issues than by the disability itself, and that’s in here. We’re just as vulnerable to the ordinary wear and tear of living in a world where even the able-bodied are unable to meet the standards. Some must ask for help from attendants in order to simply masturbate, and some are unable to have penetrative sex at all. We are also significantly more vulnerable to abuse at every turn, by friends, family members, intimate partners and even medical professionals. The psychological defense systems we need to protect ourselves from further abuse may not be in place.
So while we’re not alone in feeling sexual past the onset of disability, we’re also not alone in finding it difficult to form or maintain healthy sexual relationships, with ourselves or with other people, and this is the first book I’ve seen that addresses both physical and emotional issues thoroughly and compassionately, never mind provides lists of books, websites and organizations that can help. This book is worth the price for the Resources chapter alone.
I’ve changed my mind. Everyone should have this book, because disability affects everyone, one way or another. If it doesn’t get us while we’re still of working age, it will get us as we get older, and it will also get those we know and love. A healthy spouse can get hit by a car, or a sibling can develop cancer, rheumatoid arthritis, or any number of disabling conditions, and the prevailing assumption that the disabled are incapable of or disinterested in sex creates additional barriers to a full life.
The assumptions about the disabled and sex don’t just affect our intimate relationships, they affect every social relationship we have. How many well-meaning matchmakers think of hooking that great girl they know up with their cousin who has MS? And how many physical therapists think to teach their clients how to adapt their sex lives?
The answer is not many, but this book does its level best to fill the gap. Having issues with self-esteem and worried about what it will be like to meet people? It’s in here. Sexual logistics? It’s in here. Communication? It’s in here. Information on sexually transmitted diseases? It’s in here. Kink? It’s in here, too, and so is what to do if you’re being abused. It even has a bit about one of my favorite body-supporting activities: Yoga.
As a writer who specializes in love between imperfect people, this book is a gold mine. There’s information about disabilities I have no experience of, personal or vicarious. I’ll refer to it again and again.
As a disabled person, this book is a great comfort. There’s nothing in here regarding my own impairment that I didn’t already know, but it’s good to be reminded that I’m not alone. Life with disability might be interesting, but it’s never easy.
It’s possible that something’s been left out of this book, but it’s not for lack of trying on the part of the authors or of Cleis Press. They’ve done an excellent job. Anything further will build or expand on this rather than better it.
So in the absence of me being able to afford to buy six billion copies, get one for yourself. If the disabled person in your life is your partner, it can help you understand what they’re going through and how to best offer support. If it’s a friend or relative, it can help you accept and support their intimate life.
If the disabled person is you, at the very least it will let you know you have plenty of company.
© 2008 Ann Regentin. All rights reserved. Content may not be copied or used in whole or part without written permission from the author.
About the Author: Ann Regentin was introduced to erotica at a tender age, when a raid of her mother’s bookshelves netted such gems as The Perfumed Garden and Lady Chatterly’s Lover. She started writing it during her ninth grade biology class, then dropped it for about twenty years to become a musician, a college student, a cripple, a bookstore clerk, an artist, a model, a mother, a parrot rescuer, and finally a reference writer before coming full circle back to erotica.
Her stories and articles have appeared in a variety of places both online and in print, and she is a Contributing Editor at CleanSheets.com. She lives in the Midwest with her son, two parrots, and an elderly Gibson guitar.
Visit Ann Regentin at: www.annregentin.com