Sexuality and disability

Definition

Sexuality is a wide term that encompasses more than just the sexual organs or secondary sexual characteristics of a human being. It includes body image, self image, gender identity, beliefs and feelings about sex, capacities for love and friendship, and social behavior as well as overt physical expression of love or sexual desire. A person's sexuality is influenced by ethical, spiritual, cultural, and moral concerns. It can also be greatly impacted by mental, emotional, or physical disabilities.

Description

Simply put, sexuality is a natural part of life, and it should be addressed with sensitivity, but as any other occupation or activity would be by a rehabilitation therapist or other health professional treating a patient. While the sexual activity of persons with disabilities has been studied by medical and mental health researchers for the last thirty years, however, the subject rarely arises in ordinary conversations between persons with disabilites and their health care providers. This silence reflects both the embarrassment that people feel in discussing sexual problems, as well as the social attitude that persons with disabilities are not fully human, that is, they do not have sexual desires.

Sexual activity is a complex set of behaviors that involves most of the systems of the body as well as the mind and emotions. Consequently, a physical or mental disability that interferes with cognition, motor skills, coordination, and/or sensory skills can affect one's sexuality and/or sexual activity. Such physical impairments as brain and spinal cord injury , multiple sclerosis , arthritis, or seizures produce muscle weakness, loss of endurance, a decreased range of motion, and back pain . Such developmental and cognitive disabilities as attention span deficit, dementia , mental retardation, and depression affect a person's ability to form healthy relationships with trustworthy sexual partners. Lastly, the damaged self-image that can result from such surgical procedures as mastectomy or amputation can affect a person's desire to resume or maintain sexual activity.

Health professionals should note that sexuality is a concern of most people in contemporary society, not just of those with some form of disability. The widespread use of sex in advertising to sell consumer goods, the saturation of the mass media with images of physically perfect men and women, and the increased availability of pornography leave many adults confused about "normal" sexual behaviors, "normal" aspects of attractiveness to others, and "normal" levels of sexual desire. It is often helpful to reassure persons with disabilities that "normal" covers a wide range of degrees of interest in sexual relationships or sexual behaviors. Human sexuality is not a "one-size-fits-all" entity in either men or women.

Clients of occupational therapists, physical therapists, social workers, and other health professionals should understand that they can discuss sexual concerns. Clients should be reminded throughout the process of rehabilitation that the return of sexual feelings is a sign of healing and recovery. It is equally important, however, for practitioners to keep in mind that a client with a chronic stressful health problem may not consider sexual activity a high priority. That decision, too, should be respected.

Physical disabilities

SPINAL CORD INJURIES. Sexual function or dysfunction following spinal cord injury (SCI) depends on the severity of injury. Sensation can be affected throughout the limbs and body, affecting erectile function in men and lubrication in women. Just below half of studied men have reported they could have erections and achieve orgasm. Most women report that they still can achieve lubrication and orgasm, but sometimes in an altered manner. Males with spinal cord injuries often use their mouths more frequently to arouse and give pleasure to their partners.

STROKE AND TRAUMATIC BRAIN INJURY. Survivors of stroke are often concerned about the impact of changes in their physical appearance on their partner, since strokes often produce such symptoms as drooling or a droop on one side of the mouth. In addition, many persons who have had a stroke worry about having another stroke during sexual activity. Lastly, either emotional depression or medications can cause stroke patients to lose interest in sex. Frank discussion with the partner as well as experimentation with different positions for inter-course are often helpful. In no case, however, should a stroke patient stop taking a prescribed medication without consulting his or her physician.

Not much research exists on the sexual function following traumatic brain injury (TBI). However, sexual activity has been found to decrease following TBI. Existing studies report conflicting evidence regarding men and erectile dysfunction. While many men report no erectile dysfunction, other studies have shown that a majority of men are impotent following TBI. It is also possible, depending on the portion of the brain affected by TBI, for a person to exhibit inappropriate sexual behavior, which is also known as hypersexuality.

NEUROMUSCULAR DISORDERS. Neuromuscular disorders, such as muscular dystrophy , can result in under-developed genitalia, which in turn, can affect sexual function. Although few studies exist, most experts believe that given the physiology of neuromuscular disorders, people with these disorders still are able to become aroused, have erections, and experience orgasms.

The age at onset of the disorder determines how sexually active a person can be. A client who experiences neuromuscular disorders at an early age may never gain full physical dependence, and that subsequently could hinder sexual function. Physical disability leads to lessened socialization, which also can hinder sexual expression. It is also common for the parents of children with disabilities to never fully acknowledge sexual maturation or the possibility of normal sexual function in their children.

ARTHRITIS. Arthritis causes stiffness in the joints, fatigue, and pain. A decreased desire for sex may result from the tiredness and discomfort themselves, but it may also be a side effect of arthritis medications. Arthritis patients should be assessed for joint range of motion, inflammation and deformity, and muscle strength and flexibility. Because arthritis affects the use of the hands, masturbation can be difficult. Positioning during sex can be difficult because of the body's loss of flexibility. Low back pain is common in clients with osteoarthritis , and sexual activity may result in muscle spasms.

Rheumatoid arthritis causes bone erosion and may cause problems with erection. Some persons with rheumatoid arthritis have reported that the symptoms of the disorder become temporarily worse following sexual activity.

DIABETES. Many studies exist examining the effects of diabetes on sexual function and sex drive. Most experts believe that sexual desire in men is virtually unaffected by diabetes. Women, however, are reported to experience a decrease in sexual desire. Diabetic women also experience a higher rate of occurrence of vaginal infections, which results in a decrease in lubrication, discharge, odor, itching, and tenderness, all which affect sexual desire and function.

Diabetes greatly impacts contraception , fertility, successful gestation, and the long-term health of women. Diabetic women are less likely than nondiabetic to carry a child full term and have a live birth. There is a risk of miscarriage , birth defects, and complications during childbirth .

Mental disabilities

Cognitive or mental impairment does not preclude a person's engaging in sexual activity. For a client with mental retardation, information should be presented in simple, short terms. The Association for Retarded Citizens believes that persons with mental retardation have a fundamental right to learn about sexual functions and relationships as well as safe sex, and that they should be able to make informed decisions regarding their sexuality. The Arc, a national organization for people with mental retardation maintains that the retarded should not be involuntarily sterilized nor denied sterilization if they choose it forthemselves.

Having a developmental disability does not preclude a person from ever having an appropriate sexual relationship. Although some individuals may be too impaired to have a safe and appropriate sexual relationship, there are many individuals with moderate developmental impairments who can engage in self-stimulation.

The Arc also urges that people with mental retardation be given education and support to protect them from abuse and exploitation while respecting their human dignity.

Children with disabilities

Children with disabilities should not be treated as if they are asexual beings, without sexual feelings and drives. At the same time they, like people with mental retardation, require appropriate protections against exploitation and abuse by adults. These protections are all the more necessary because of the increased emphasis on sexual activity in the mass media and the general culture.

Because masturbation and certain other behaviors that may be related to children's self-discovery are clearly inappropriate if performed in public, it is important for practitioners to point out their inappropriateness to children. Practitioners should not, however, refer to these behaviors as "bad," but rather as improper at certain times.

The elderly

In general, older adults are often regarded as "over the hill" with regard to sexual attractiveness, interest or activity, purely apart from any physical or mental disabilities that may accompany the aging process. This prejudice is particularly strong in the case of post-menopausal women. The National Women's Health Information Center reports that many medical professionals are misinformed about the sexual potential of women of any age with disabilities and consequently do not encourage them to resume normal sexual activities. But many older women also reported to the agency that they do not receive adequate education on sexual function related to disability. It is important for health professionals to inform themselves about the effects of aging on sexuality in the elderly—particularly about the side effects of medications frequently prescribed for older adults—and convey an openness to discussing these matters with their clients.

Viewpoints

The Sexuality Information and Education Council of the United States (SIECUS), which takes stands on issues of sexuality believes that persons with disabilities have a right to sexuality education, sexual health care, and opportunities for sexual expression. It further states that public and private health agencies should ensure that persons with disabilities should be eligible for services dealing with sexuality and sexual function.

Professional implications

Rehabilitation should include advice about resuming sexual activity when such discussion is appropriate. It is important, however, for the practitioner to consider this issue prior to addressing it with a client. The practitioner should first analyze his or her own attitudes about sexuality, and understand that the client may want to discuss an aspect of sexuality or sexual function that the practitioner does not agree with or is uncomfortable discussing. If a practitioner plans to avoid discussion of a particular sexual issue with a client, they should be prepared to refer the client to appropriate counseling or therapy that will meet this need. The practitioner always should remain nonjudgmental with the client when discussing any sexuality issue.

Much like any other activity of daily living, sexuality should be addressed by the practitioner during the normal course of treatment. The issue can easily be raised in the context of such other everyday activities as grooming, bathing, or dressing. Sexual issues can be addressed in the context of communication and intimacy among partners rather than focusing on physical abilities or limitations. Practitioners can bring up the subject with an open-ended question asking the client if he/she has any questions regarding sexual activity. If the practitioner avoids discussion of sexuality, the client may assume that the subject is inappropriate or that the practitioner is uncomfortable. Practitioners uneasy about the subject should at least put the issue on the table, leave it open for discussion, and give the client the option of declining to address it. It is also appropriate to allow the client to invite their spouse or partner to a treatment session dealing with sexuality.

Resources

BOOKS

Neistadt, Maureen E., and Elizabeth Blesedell Crepeau. Willard and Spackman's Occupational Therapy. 9th ed. Philadelphia: Lippincott-Raven Publishers, 1998.

Sipski, Marcia L., and Craig J. Alexander. Sexual Function in People With Disability and Chronic Illness. Gaithersburg, MD: Aspen Publishers, Inc, 1997.

Umphred, Darcy Ann, ed. Neurological Rehabilitation. 3rd ed. St. Louis: Mosby-Year Book, Inc., 1995.

PERIODICALS

Couldrick, Lorna. "Sexual Issues: An Area of Concern for Occupational Therapists?" British Journal of Occupational Therapy 61 (November 1998): 493-496

Friedman, Judith D. "Sexual Expression, The Forgotten Component of ADL." OT Practice 2 (January 1997): 20-25.

Holmes, Maria. "An Evaluation of Staff Attitudes towards the Sexual Activity of People with Learning Disabilities." British Journal of Occupational Therapy 61 (March 1998): 111-115.

Joe, Barbara E. "Coming to Terms with Sexuality." OT Week (19 September 1996): 214-216

ORGANIZATIONS

The American Occupational Therapy Association, Inc. 4720 Montgomery Lane, Bethesda, MD 20824-1220. (301) 652-2682. <http://www.aota.org>.

The ARC of the United States. 1010 Wayne Ave., Suite 650, Silver Spring, MD 20910. (301) 565-3842. <http://www.thearc.org>.

Center for Research on Women with Disabilities, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine. 3440 Richmond Ave., Suite B, Houston, TX77046. (800) 442-7693. <http://www.bcm.edu/crowd>.

National Information Center for Children and Youth with Disabilities. PO Box 1492, Washington, DC, 20013.(800) 695-0285. <http://www.nichcy.org>.

National Institute on Aging (NIA) Age Page: Sexuality in Later Life. NIA Information Center, P. O. Box 8057, Gaithersburg, MD 20898. (800) 222-2225. TTY: (800) 222-4225.

The National Women's Health Information Center. 8550 Arlington Blvd., Suite 300, Fairfax, VA 22031. (800) 994-WOMAN. <http://www.4woman.gov>.

Sexuality Information and Education Council of the United States (SIECUS). 1638 R Street, Suite 220, Washington, DC 20009. (202) 265-2405. <http://www.siecus.org>.

Meghan M. Gourley