The Guide to Getting It On (168 page)

Goodbye to Spontaneity

Some able-bodied couples don’t like to use a condom because the thirty seconds it takes to put it on destroys the mood for them. Think of how resilient “the mood” has to be when it takes all sorts of preparations and maneuvers to be ready to have sex! Think of how resilient the mood has to be if one partner cries out in pain and adjustments need to be made in order to continue.

One of the things that people who are disabled might lose is the sexual spontaneity that able-bodied couples take for granted unless they are parents with kids who are still at home. Consider the following advice that was recently posted on the Internet:

“Patience is truly a virtue in disability-related sex. Disability often destroys something in sex, spontaneity for one thing. Drugs, fatigue, depression, neurological impairment can also be a destructive force. Utilizing the turn-on can partially make up for what has been taken away. Sometimes erotic books, photos or videos can enhance the performance. The type and degree of disability often demands traveling that extra mile or two. “ —Peter Love

Getting into Relationships

“Why would any man want this body?” “No woman’s going to want this!” Some people who have disabilities feel that nobody will find them sexually attractive. As a result, they might push away people who do. Or, at the other end of the spectrum, they might offer themselves to the first person who shows interest, even if it is not someone they like or trust. A disabled person without a solid sense of self might be starved for affection or desperately need to prove that he or she is desirable. Of course, one doesn’t need to be disabled to have hang-ups, but it can be extra-difficult when your physical ducks aren’t in the same row as everyone else’s.

Regarding the subject of dating and people with disabilities, a woman with cerebral palsy recently commented, “I think women are more accepting of differences than men. I see a lot more disabled men married or in serious relationships. I see a lot more disabled women just giving up.” There are plenty of disabled men who say it’s equally tough for them. Another disabled woman says one of the reasons she fell in love with her husband “was the idea that here was a person who looked and acted OK, wanting to have a relationship with me.”

People with disabilities sometimes shy away from dating other people who are disabled. When you are disabled yourself, there can be a kind of hatred of other people who are disabled—an inner need to say, “I’m not like them.” There can also be the added problem of social acceptance. Two people in wheelchairs humming down the sidewalk garner far more stares from able-bodied pedestrians than does one.

The Disabled Couple

Perhaps the most difficult aspect of being in a relationship where one or both members is disabled is that ultimately, the couple has to face the same kinds of fights, squabbles, disagreements and difficulties as couples who have no physical disability! As for how disability affects a couple, some able-bodied couples stay in love with each other only as long as each partner is able to mirror the other’s sexual attractiveness. If one member starts to look older than the other, slows down or becomes disabled, the relationship may quickly dissolve. With other couples, there is a deep love and friendship that transcends physical change.

When there is a new disability, it is not uncommon for both partners to experience frustration, anger, fear, disappointment, and helplessness. Roles within the relationship may change. Neither the able-bodied member nor the one who is disabled should be afraid to seek help and advice from social workers and rehab staff.

When it comes to sexual intimacy, a couple with a new disability may need to learn anew. This might actually be a relief to your partner if you weren’t as good in bed as you thought you were! The good news is that couples who had a rewarding sex life before the disability usually find a way to have a good sex life after.

If you are a couple whose primary expression of sexuality was through intercourse, you may have a good deal of adjusting ahead. It will be easier if you are a couple whose sexuality included a full range of sensory experiences, like enjoying the beauty of a sunset, holding hands and caressing each other.

Also, if you can afford it, it would be wise to hire an attendant to perform caretaking functions. Otherwise, a parent/child dynamic can evolve between you and your partner which can intrude on feelings of sexual passion.

With a Deaf Ear & Twinkle in His Eye

A woman who is a friend of the Goofy Foot Press works with deaf people and has also had sex with one or two deaf men. She said that she never realized how much she relies on verbal cues from a partner until she was romanced by a deaf man. Whether it’s being in another room or looking down when you are having a bowl of soup, the usual conditions for connection are suddenly missing when a partner can’t hear. With a deaf partner, there is no hearing without seeing. She said that the lack of verbal give-and-take is particularly noticeable during sex, whether it’s oral sex or intercourse.

People who are deaf are obviously more comfortable with verbal silence during romance and lovemaking than are people who can hear. If our friend is sleeping with a man who is deaf, she lets him know that she needs more input than he might be used to giving a partner who is also deaf. She also says that it is important to have some of the lights on when you are making love to a deaf person, so they can either see you sign or read your lips. On the other hand, deaf people sometimes sign on each other’s skin, or if they are in a spoons position, the person in the back can reach around a partner’s body and sign in front where the partner can see.

Attacking Their Own

While many people who are disabled would welcome an increased awareness that they are just as sexual as anyone else, some clearly don’t. A few years ago, when a mainstream glossy magazine for disabled people ran a story on sex and the disabled, some disabled readers were so upset that they canceled their subscriptions. You might think that the story was
Hustler
-like and included photos of the naked disabled doing things that would have pleased Caligula. In reality, the article was so tame that it could have been published in
Parade
magazine or
House & Garden.
Perhaps the subject of sex brings up huge amounts of frustration and sadness for some disabled people, to the point where they simply get angry at sex itself.

So You Won’t Have to Read the “Sex during Pregnancy” Chapter Unless You Want To

Women can get pregnant in a wheelchair just as easily as they can get pregnant in any other chair. Don’t think that because you are disabled or paralyzed from the shoulders or waist down you somehow can’t get pregnant. Be sure to speak to each other and to your physician about birth control.

Note: Until recently, it was believed that birth-control pills, shots and implants might be unsafe for some women who are in wheelchairs. It’s not the wheelchair that’s the problem, but proneness to circulatory problems and blood clots that can be increased by the birth-control pill. If your gynecologist isn’t used to working with women who have disabilities, check with the
National Spinal Cord Foundation
for a referral.

Attendants and Caregivers —T he Good and Bad of It

Powerful feelings can develop between people who are patients and those who are hired to care for them—both loving and hateful. It is beyond the scope of this book to explore the different possibilities, except to say that it does little good to turn a blind eye to the dynamics that can arise between caretaker and caregiver.

If you are able-bodied, consider for a moment the issue of privacy. The kind of privacy that able-bodied people take for granted might not exist for someone who is disabled. This can range from bathing and completing bowel movements to preparing for masturbation and sex. It may be necessary for a disabled person to share private aspects of themselves with an attendant that some able-bodied people don’t feel comfortable sharing even with a partner of many years.

Considering the level of dependency that some disabled people have, opportunities for abuse by attendants are rife. This is a huge issue, and abuse is unfortunately quite common. It is important that disabled people speak up against assistants who are abusive. If this is a concern for you, please contact your local center for independent living.

Helping the Helpers

To have fulfilling sex lives, people with disabilities need the help of several different medical subspecialities. These might include neurology, psychology, urology, oncology, endocrinology, physical and rehabilitative medicine and sex therapy. Unfortunately, getting medical specialists to work together in a collaborative effort requires that professional egos be set aside. The problem multiplies when the issue is sex, since many of the professionals who need to work together might be uncomfortable with the subject at hand.

If you are a disabled person who is struggling to get assistance with your sexual needs, maybe it will help if you give your healthcare provider a copy of this book opened to this chapter. Perhaps it will help them feel more at ease in aiding you with sexual matters. After all, it’s quite likely that they, too, enjoy sex and would be more than happy to help you if they were just able to feel more comfortable.

Rehab Note: When rehab therapists get around to mentioning sex, it is usually in combination with discussions about bowel and bladder functioning. This is most unfortunate. People who are newly disabled need access to positive information about sexuality early in their rehabilitation. Even if they reject the information, it is something positive that will remain in their consciousness, to be accessed at another time.

Stroke Studies — Interesting for a Number of Reasons

Stroke survivors, as a group, experience a drop in sexual activity. Until recently, this was thought to have physical, rather than emotional, causes. However, a study of stroke survivors by Buzzellie, di Francesco, Giaquinto and Nolte concluded that “psychological issues, rather than medical ones, account for disruption of sexual functioning in stroke survivors.”

It is especially significant that the researchers found no differences in the sexual functioning of people with right-brained lesions as opposed to left-brain lesions or contralateral lesions. This contradicts our modern tendency to view behaviors as coming from one side of the brain or the other. This study indicates that sexuality is neither “right-brained” nor “left-brained.”

Recommended:

Sexuality Reborn
is an excellent video in which four likeable and articulate couples tell about their personal experience with sex and disability. At least one person in each couple is wheelchair-assisted. It is very helpful for both disabled and able-bodied viewers. College instructors who use the
Guide to Getting It On!
in their classes are highly encouraged to show this tape to their students. A great deal of humanness is conveyed without a moment of pity or self-absorption. There is something about the honesty and genuineness of the couples who speak in this video that gives able-bodied people a more realistic and grounded perception of people who are disabled. There are parts of the tape where the couples are naked and having sex, but it isn’t in a way that’s going to ruffle the feathers of your dean or regents. The only criticism that reviewers had was that the occasional comments by the talking-head medical specialists seemed unnecessary and detracted from, rather than added, to the tape’s effectiveness. To order, call (800) 435-8866.

Untold Desires
shows interviews about sex with people who have all kinds of disabilities. This award-winning documentary contains no nudity and makes an excellent companion tape for
Sexually Reborn.
We seriously hope that anyone going through a rehab program would get to see both tapes. Included is a wonderful interview with a woman who has severe cerebral palsy. She is astute, funny, and energetic. The tape provides subtitles when she speaks because her speech is so CP-involved. The interviews with other disabled people are equally valuable. As an additional bonus, there is spectacular footage of one chair-assisted man skiing down a steep mountain and a disabled dude racing down stairs and streets. Redefines the term “No Fear.” Highly recommended for people with disabilities as well as those without.

Murderball
is not about sex, but the next best thing: quads who play rugby. We’re talking full-contact rugby in wheelchairs that would make Mad Max proud. They end up competing in the Paralympic Games. If people with disabilities can do this, they can make sex work.

The Ultimate Guide to Sex and Disability,
by Miriam Kaufman, Cory Silverberg and Fran Odette, Cleis Press. This is the sex bible for people living with disabilities, chronic pain and illness. It is full of helpful suggestions and ideas, and should be on the shelf of any individual or couple who is experiencing disabilities or chronic pain.

Citations:
Both quotes in the section “Getting into Relationships” are from “Dating Issues for Women with Physical Disabilities,”
Sexuality and Disability,
by Rintals, Howland, Nosek, et al.