The Ultimate Guide to Sex and Disability (38 page)

There is more to who you are than sex. However, we may have learned that our purpose, for the perpetrator, is to provide sexual

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gratification for someone else. It's difficult to feel that we are worthy and deserving of so much more when that is the message that we've been exposed to. The perpetrator may have told us that we should be grateful for the sexual attention because no one else would love us because of our disability. All these messages can become deeply ingrained and can have a significant impact on how we feel about ourselves, our worth, and our ability to move toward being in relationships with ourselves and others.

You can make choices now as an adult. You can choose when and with whom to have sex. You can strive toward feeling safe when feeling sexual. Taking a break from sex is also a choice. It can be helpful to realize that thoughts about sex or the abuse do not have to dominate your life. If feeling sexual is too painful, you can concentrate on other things in your life and then revisit sexuality to see if the break has helped you get through some of the pain.

Sexual Exploration

Start any sexual exploration slowly. You might want to start by looking at your body, describing it to yourself. Stroke yourself in areas where you weren't touched during the abuse. Over time, touch yourself in areas that seem scarier, always giving yourself permission to stop when you need to.

Make a date with yourself. If this isn't possible because of privacy, imagine a place where you could pay attention to yourself in a relaxed and attentive way. What does this place look like? What textures are you feeling? What is the light like? There is no rush. Breathe slowly and try to stay focused on the sensations you feel as you begin to touch (or imagine touching) your skin. At first it may be difficult to stay connected and not "split" from your body. Practice at your own pace.

What about partners? It is possible to have a healthy sexual relationship with someone else. If you've been celibate for a number of months or years and are now moving toward having a sexual relationship with a new lover, take the time to look at the reasons for why you want to be

in a sexual relationship. Communicating with your lover or partner can be challenging and scary, but in many ways can bring new possibilities to your relationship. Just as you may need to pace yourself when disclosing information about your disability and what that might mean about being sexual with someone else, you may also consider the need to pace yourself and set boundaries about what you are willing to disclose about your abuse. However, if you think you might have a strong reaction to sex, it is a good idea to talk to your lover. Ultimately, you have the choice about how much you wish to share with a partner. If you can, share with your lover what they can expect from you sexually. If you want to go slow, say so. If you've made a commitment to not engage in sex when you do not want to, tell them. It takes courage to put yourself out there, as it does when talking about sexuality and disability. Take your time getting to know your lover and feel that you would be able to say "no" before saying "yes."

Practice what you'd like to say to a partner. You can do this with yourself, maybe in front of a mirror. You can also do it with a counselor or a friend. Try to think of what your lover's reaction will be. Practicing will give you an opportunity to be clear about what you want them to know. What you communicate should bring you closer instead of putting distance between you. You are worth it. You deserve loving support.

In general, talking to someone such as a counselor can be helpful. It may not always be possible to find someone who has knowledge about disability and sexual abuse and how those experiences can be intertwined. But talking about one of these issues may afford the opportunity to gain insights to see other parts of your experience. Your insights can then be shared with your lover so that they can also have a greater awareness of what is happening in your relationship outside of being sexual with you.

Sometimes people who have been abused feel decreased desire and also feel undesirable. These two can be linked. You can start by making statements to yourself about the parts of you that you may be able to see as desire-worthy and then expand it from there. Try exploring your body even if it doesn't feel sexual to you. You may come to discover some new

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desire that might be scary. You have experienced someone else's desires being forced upon you, so desire is associated with a lack of control. Without consent, you met the needs of someone else and their desire was used against you. You may never have let yourself experience natural sexual feeling. This might be compounded by the fact that people with disabilities are not considered to have sexual feelings and desires. Thinking about what is desirable outside of having sex may be one place to start—knowing that you don't have to perform for anyone else. Remember also that you are in control. You can let yourself want anything, and that doesn't mean you will go out and get it. Desire isn't bad if we are able to feel like it's in our control.

Learning about consensual sexuality (by reading this book, for a start), opening yourself to desire, exploring your sexual response, and learning that you can be in control will lead you to a healthier sexuality in which sometimes it will even feel safe to allow yourself to be out of control.

Always remember that there are people who can help. If you are in a situation where you are being sexually victimized, you can take action. Abuse hotlines are available, although if using the phone is not possible you will need to find out which ones have TTYs or are able to offer alternative ways of communicating such as email. If the agencies that are mandated to help you are not accessible, someone from a disability organization may be able to act as an advocate to get what you need. There are excellent resources available for survivors of sexual abuse. Some address issues related to sexuality, disability, and sexual abuse. There are some good websites where survivors with disabilities talk about their experiences and suggest some excellent resources.

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many of these. Be aware, however, that websites come and go, and over time they may find different homes on the Internet, or disappear entirely.

In most cases, resources specifically intended for the gay, lesbian, bisexual, transsexual, and queer communities are included under each subject heading, and their focus is mentioned where it applies.

An online version of this resource list can be found at: www.comeasyouare.com/resources. We will make every effort to keep this list updated, and we welcome your help and suggestions with additions to the list. You can email us at: [email protected].

Centers for Independent Living

Online

EnableLink www.enablelink.org

Contains an extensive directory of disability resources in Canada, including centers for independent living listed by region.

Independent Living Institute www.independentliving.org/index.html

The institute, based in Sweden, works with projects that promote opportunities for self-determination in everyday life for persons with extensive disabilities, in particular personal assistance users. Its website contains many useful links and information on independent living across Europe.

Independent Living USA www.ilusa.com/index.htm

Website contains links and directories for independent living centers across the United States, in addition to disability news and other disability related resources.

Organizations

Association of Programs for Rural Independent Living

5903 Powdermill Rd.

Kent, OH 44240

(330) 678-7648

www.april-rural.org/

[email protected]

Canadian Association of Independent Living Resource Centres (CAILC) 1104-170 Laurier Avenue W. Ottawa, ON, Canada K1P 5V5

(613) 563-2581, fax (613) 563-3861, TDD (613) 563-4215 http://cailc.ca [email protected]

CAILC is a national umbrella organization that consists of local autonomous Independent Living Resource Centers (ILRCs). Each ILRC is community-based and controlled by and for persons with disabilities. CAILC is run by the individual ILRCs and provides support, training, networking with both government and nongovernment organizations, and information dissemination.

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Disability Culture, Activism, and Stories

Print

BOOKS: While these books don't necessarily focus on sex, sex comes up in many of them. Some of them may be out of print. We have included them because you may be able to find them at libraries and used bookstores or via Internet used-book search sites.

Anesthesia: Poems, by Kenny Fries (Advocado Press, 1996).

Basic Skills, by Anne Finger (University of Missouri Press, 1991).

Black Bird Fly Away: Disabled in an Abie-Bodied World, by Hugh Gregory Gallagher (Vandamere Press, 1998).

Bob Flanagan: Supermasochist, by Bob Flanagan and Sheree Rose, ed. by Andrea Juno and V. Vale (Juno Books, 2000).

Body Remember: A Memoir, by Kenny Fries (Dutton, 1997).

Bone Truth: A Novel, by Anne Finger (Coffee House Press, 1994).

Carnal Acts: Essays, by Nancy Mairs (Beacon Press, 1996).

Deaf in America: Voices from a Culture, by Carol Padden and Tom Humphries (Harvard University Press, 1990).

The Disability Rights Movement: From Charity to Confrontation, by Doris Zames Fleischer and Frieda Zames (Temple University Press, 2001).

Disability Studies Reader, ed. by Lennard Davis (Routledge, 1997).

Diving Bell and the Butterfly, by Jean-Dominique Bauby (Vintage Books, 1998).

Encounters with Strangers: Feminism And Disability, ed. by Jenny Morris (Women's Press, 1999).

£x/7e and Pride: Disability, Queerness and Liberation, by Eli Clare (South End Press, 1999).

Imprinting Our Image: An International Anthology by Women with Disabilities, ed. by Diane Driedger and Susan Gray (Gynergy Books, 1992).

Make Them Co Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights, by Mary Johnson (Advocado Press, 2003).

The Me in the Mirror, by Connie Panzarino (Seal Press, 1994).

Moving Violations: War Zones, Wheelchairs and Declarations of Independence, by John Hockenberry (Hyperion, 1996).

A Nearly Normal Life, by Charles L. Mee (Little, Brown, 2000).

The New Disability History: American Perspectives, ed. by Paul K. Longmore and Lauri Umansky (New York University Press, 2001).

No Pity: People with Disabilities Forging a New Civil Rights Movement, by Joseph Shapiro (Times Books, 1994).

Nothing About Us Without Us: Disability Oppression and Empowerment, by James Charlton (University of California Press, 2000).

Pain Journal, by Bob Flanagan (Semiotext(e), 2000).

Past Due: A Story of Disability, Pregnancy, and Birth, by Anne Finger (Seal Press, 1990).

Plant of the Blind: A Memoir, by Stephen Kuusisto (Delta, 1998).

Points of Contact: Disability, Art, and Culture, ed. by Susan Crutchfield and Marcy Epstein (University of Michigan Press, 2000).

Pushing the Limits: Disabled Dykes Produce Culture, edited by Shelley Tremain (Women's Press, 1996).

Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag, ed. by Barrett Shaw (Advocado Press, 1994).

Range of Motion: An Anthology of Disability Poetry, Prose and Art, ed. by Cheryl Marie Wade (Squeaky Wheels Press, 1993).

Slow Dance: A Story of Stroke, Love, and Disability, by Bonnie Sherr Klein (Random House, 1997).

Staring Back: The Disability Experience from the Inside Out, ed. by Kenny Fries (Plume, 1997).

Waist-High in the World: A Life Among the Nondisabled, by Nancy Mairs (Beacon Press, 1998).

'What Happened to You?": Writing by Disabled Women, ed. by Lois Keith (New Press, 1996).

Why I Burned My Book and Other Essays on Disability, by Paul K. Longmore (Temple University Press, 2003).

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With Wings: An Anthology by and about Women with Disabilities, ed. by Marsha Saxton and Florence Howe (Feminist Press, 1993).

Women with Disabilities: Essays in Psychology, Culture, and Politics, ed. by Michelle Fine and Adrianne Asch (Temple University Press, 1990).

MAGAZINES: Many of these magazines run articles about sexuality, and you can access some information online free from their websites as well.

Abilities

340 College St., Suite 650 Toronto, ON, Canada M5T 3A9 (416) 923-1885, fax (416) 923-9829 www.enablelink.org

Kaleidoscope

United Disability Services

701 South Main St.

Akron, OH 44311

(330) 762-9755, TTY (330) 379-3349

www.udsakron.org

Mainstream Magazine www.mainstream-mag.com

Mouth

61 Brighton St.

Rochester, NY 14607

www.mouthmag.com

New Mobility

No Limits Communications Inc.

RO. Box 220

Horsham, PA 19044

www.newmobility.com

The Ragged Edge (formerly The Disability Rag) For more information write to: RO. Box 145 Louisville, KY 40201 www.ragged-edge-mag.com

Online

Crip Commentary

www.cripcommentary.com

The "whenever" regular Web column of disability activist, writer, and poet

Laura Hershey. Full of insight, humor, and stuff to get really angry about, her

commentary is not to be missed.

Disability World

www.disabilityworld.org

A new webzine dedicated to advancing an exchange of information and

research about the international independent living movement of people with

disabilities.

Films Involving Disabilities www.disabilityfilms.co.uk

A very thorough site that lists 2,500 feature films which depict or discuss disabilities. You can search on terms (like sex) to find films either by subject matter or by disability.

GnarlyBone News [email protected]

A semiregular free online newsletter published by Cheryl Marie Wade. To subscribe or unsubscribe email to [email protected] with your request and email address in the body of the email. Submissions are welcome; shorter is better but not mandatory. Use black type on white background in no smaller than twelve point.