Sex and disabilities--not mutually exclusive
by Jill M. Shuman
Actor Christopher Reeves and his wife created national headlines when they spoke in public about their plans for an active sex life, despite his catastrophic spinal cord injury. But they are not atone. In fact, for many couples, sex can be as good or even better after a disabling injury. The general attitude toward people in wheelchairs is that sexual activity is impossible. Nothing could be further from the truth. Because sex is never entirely genital, it can certainly be enjoyed by a person who is disabled or physically handicapped. In fact, 50 percent of people with spinal cord injuries report that they are able to have an orgasm. Many of them report areas of the body above the injury that become hypersensitive and when stimulated, result in sexual arousal and sometimes orgasm.
One common misconception following a spinal cord injury is that a single man or woman will never find a life partner, or that an existing partner will leave a relationship due to the complications of an injury. This is not the case. The divorce rate following spinal cord injury is only slightly higher than in other populations, and thousands of people have been married and begun families after a spinal cord injury.
It is important to remember that the inability to move does not imply the inability to please your partner or to be pleased. The absence of sensation doesn’t mean that there is an absence of feeling. A disabled person still feels desire even though the genitals may no longer function. The ability to enjoy intimacy and closeness persists even though the ability to perform may not. Couples can still enjoy a loving, close, and intimate relationship although it may be different from the one shared prior to the disability.
Physical changes to expect If the disability is the result of a neurologic lesion such as a spinal cord injury, women might expect to have changes in sensations in the vaginal area, which might cause them to become either less or more sensitive. Vaginal dryness caused by reduced lubrication may also be a problem. Men may have difficulty or an inability to get an erection, and may notice less sensation in the penis. They may also note difficulty with ejaculation. Depending on how much of the spinal column is involved, spasticity might cause cramping of the adductor muscles of the thighs, making them difficult to separate. Pain syndromes can make response unpredictable, making what once felt stimulating now feel painful. Bladder or bowel continence can cause embarrassment and anxiety, and an indwelling catheter may lessen sexual interest. In addition, weakness, fatigue, and breathing difficulties can also be barriers to sex as it used to be.
Psychological factors: Less easy to document are the psychological factors. Stress, depression, and grief are all barriers to decreased interest and often create performance anxiety. The pressures of not being able to work, or of being seen as a burden also take their toll on a couple’s sex life. You may also feel that a disability has changed the way you look, or that you’ve lost your independence or your ability to play the traditional role in your relationship. All these factors may cause you to give up on sex. But help is close at hand. Finding what works. There are treatments and options available that allow people with disabilities to enjoy a nearly normal sex life. Some of these require variations in positioning, while others involve altered forms of sexual activity of a non-intercourse nature such as touching, kissing, fondling, or oral- genital stimulation. Unfortunately, sensation cannot be restored to parts of the body affected by disability, but there are techniques you can use to increase your sexual stimulation. Set aside time to explore various parts of your body with your hands and to experiment with different kinds of touch--for example--stroking, rubbing, and squeezing. Learn to use your mouth to kiss, suck, or nip. Play with different sensual sensations on the skin such as lotions, oil, powders, feathers, silk, or even a vibrator. Concentrate on stimulating a specific area without planning to move ahead to intercourse. These exercises emphasize intimacy and pleasure versus performance and orgasm.
It is important for partners to communicate and experiment; remembering that intercourse is only a small part of sexual intimacy. The need to be open and experimental often leads couples who share a disability to discover a range of touching, caressing, positions and pleasures that many able-bodied couples would envy.
Sex and disabilities--not mutually exclusive continued Tips to enhance lovemaking
 | You should feel free to engage in any sexual activity that is physiologically pleasurable, and mutually acceptable. One priority is to find a comfortable position—pillows and cushions can lend support or take pressure off of sensitive areas. |
| Problems of lubrication can be helped by the use of water-soluble lubricants such as K-Y Jelly or Astroglide. Do not use petroleum jelly, which can cause infections. |
| It is perfectly OK to leave a catheter in one place during intercourse, as long as it is taped to the stomach or inner thigh to keep it out of the way. |
| Muscle spasms and rigidity can be controlled with medications or cold packs. You can compensate for reduced sensations in the genital area by using a vibrator. |
| Try and keep track of your sleep patterns so you can make love at times when your energy is at a peak. |
| Pain syndromes can often be controlled with medications such as amitriptylline (Elavil, Sinequan). Other medications can be timed so that their benefit is coordinated with the desired time for sexual activity. |
| A urologist can help you explore options to manage difficulties with erection--these might include medication, exercises, or prostheses. |
People with minimal use of their arms and legs can learn to stimulate their partners using their toes, or a towel, or their mouth and to gain pleasure from being touched.
It is important to arrange private time for you and your partner. You need time to be alone together--to explore your sexual urges and share your thoughts as to how best fulfill your needs and desires. It is possible to achieve orgasm even when a significant part of your body has minimal sensation or motion. Or you may attain sexual satisfaction in an entirely non-physical manner, relying instead on the emotional or spiritual release that comes from an intimate, caring relationship.
Be your own advocate. Health care providers are not necessarily trained to provide sexuality advice. So you may be left to your own devices. Learn all you can about sexual issues and share them with your doctor. If you’re sexually active, ask to receive the same information that is given to non-disabled sexually active people, such as advice about birth control, sexually transmitted diseases, and for women, regular pelvic exams. If your concerns are not met, joining a support group or counseling with a psychiatrist or certified sex therapist can help break through some of the roadblocks.
As a person with a new disability adjusts to a new physical reality, it may be difficult to change self-perceptions to accommodate the injury in a positive way. There are pamphlets, books and
videos that address the concepts of body image and sexuality. You may find these books, in conjunction with candid conversations regarding sex, self-image and your body, to be helpful as you search for different ways to express sexual feelings.
Remember that everyone has the potential for sexual growth. Sexual pleasure adds to the quality of life for everybody, including people with disabilities. It’s simply another part of the rehabilitation process. It may not be perfect the first, or even the second time, but with a loving partner and supportive health care, there is every reason to assume that sex will continue to be an important part of your life together.
Further Reading Bieluniss P. New horizons in sexuality after a spinal cord injury. Cheever Publishing; 1995
Kroll K, Klein E. Enabling romance: A guide to love, sex, and relationships for the disabled (and the people who love them). Woodbine House; 1995
Sandowski C. Sexual concerns when illness or disability strikes. Charles C. Thomas; 1989 Sipski M, Alexander C. Sexual functioning in people with disability and chronic illness. Aspen Publishers; 1997
Resources Coalition on Sexuality and Disability
122 E. 23rd St. New York, NY 10010 Phone: 1+ 212-242-3900
National Spinal Cord Injury Association
8300 Colesville Rd Suite #551 Silver Spring, MID 20910 Fax: 301-588-9414 http://www.spinalcord.org
Spinal Cord Injury Information Network
http://www.spinalcord.uab.edu
Wide assortment of information about sexuality--brochures, on-line pamphlets, videos, etc.