Women with chronic illnesses and disabilities can have the same desire for intimacy and sexuality fulfillment as other women. Yet all too often, people — including health-care providers — assume that they are uninterested in sex, unable to have sex, or simply undesirable.
That assumption couldn’t be further from the truth.
Members of the disability community have taught the medical establishment much about sexuality over the years. For example, research has validated what some women with spinal cord and other injuries have known all along — their orgasms are real and can result from genital stimulation or stimulation of other highly eroticized areas.
The first time I had sex with my boyfriend after I became paralyzed, it was awful. But then, over time, it got better with communication and experience. I was surprised that I could still orgasm after my injury, since no one at the hospital had discussed it with me.
Erasing or ignoring women’s sexuality is not only condescending; such attitudes can also negatively affect one’s health and self-esteem. Compounding the problem is that having a disability can trigger feelings of alienation or disconnection from one’s own body, causing shame and embarrassment. Reclaiming our bodies for positive sexual experiences can take time and patience, as well as experimentation and support. (Check out the resources below.)
Simply deciding when and how much to disclose if the disability is not obvious can cause stress, but as one woman notes, the reaction has not always been what she expects:
I have been surprised at how little most men I have had sex with are bothered by my urostomy [in which urine is collected from the bladder in a small bag attached to the abdomen]. I do tell them before we are in the buff, and it hasn’t been too much of an issue. I think they must already accept my disability to some extent before becoming intimate, so perhaps they just see the urostomy as more of the same — part of the disability, which is how I see it.
A great deal of sexual expression involves verbal and nonverbal communication. When one partner is deaf, is hard of hearing, or has a speech disability, new ways of communicating need to be learned. Honest and frank discussions about what makes us feel good can be difficult in any relationship; figuring out how to talk openly can be a model for all sexually active people:
I needed to find out if I could actually feel comfortable and communicate to someone who really didn’t know me before my accident in order to have sex. At this party, I met a guy, and we eventually had sex. The morning after, I asked him what it was like to be with me, and he answered, “Honestly, at first I was afraid I might hurt you because you are so small, but you talked to me and told me what felt good, and what to do that was good for me, too, so it was great!” In more ways than one, it was great for me as well.
Some chronic illnesses and disabilities such as fibromyalgia and some spinal cord injuries have associated pain, so there may be times when sexual activity is desired but even gentle touching is painful. Some women have found that direct genital stimulation can actually help to block the pain.
Certain disabilities also make people more susceptible to depression by causing changes in brain chemistry and hormone and activity levels, thus causing withdrawal from sexual activities. These feelings can be made worse by the medications prescribed.
Dating, logistics of partner sex, and planning a family can all present challenges. Lack of knowledge and poorly designed spaces can turn simple issues into huge barriers.
No matter the situation, the medical establishment needs to do more to acknowledge that women with chronic illnesses or disabilities want to be seen as sexual beings. The pressure on women to explain their desires and capabilities and to inform the world around them has been present for too long.
To find out more about women, sex and disability, check out these resources:
- ChronicBabe is an online community for younger women with chronic illnesses and disabilities that frequently addresses sexuality and relationships.
- GimpGirl Community aims to bring women with disabilities together in the spirit of support, positivity and inclusivity. The site includes useful information for women with disabilities and their allies, including a list of recommended gynecologists and clinics with accessible exam chairs or tables. Add your recommendations to help the list grow.
- Sexuality and Disability explores questions a woman with a disability might have — about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, and about unvoiced fears or experiences of encountering abuse in some form.
- A Health Handbook for Women with Disabilities: Sexuality, a book published by Hesperian Foundation, provides basic information on sexuality and disability, including different ways of having sex and possible problems during sex. It is available for free online.
- “Take Charge!” A Reproductive Health Guide for Women with Disabilities,” is a free, downloadable guide on sexual health created by The Empowered Fe Fes, a young women’s advocacy and peer support group.