Medical interest in sexuality and sex therapy is rooted in the pioneering work of Masters and Johnson (1996), originally published in the 1 1960s. Their work in human sexual response marked a new era in which sexuality became a legitimate area of clinical work and scientific investigation. Clinical observations from their laboratory were widely reported in the media of that era and ultimately served as an important component of the sexual revolution of the 1 1960s. In addition, the treatment techniques developed by Masters and Johnson served as a foundation for clinical sex therapy and have been extensively utilized in the treatment of male and female sexual dysfunctions.

For people with disabilities, the acceptance of sexuality as a justifiable and sanctioned area of counseling has been much more controversial and progress has been limited (Cole & Glass, 1977). Historically, people with disabilities received little information on sexuality and were often regarded as nonsexual and incapable of an intimate relationship. This misperception has persisted in the general population. Despite the similarities in sexual functioning for people with and without disabilities, the tendency has been to emphasize the differences between the two groups and to view people with disabilities as sexually impaired (Ducharme, 1995). Obviously, this tendency goes much deeper than issues of sexuality and is a reflection of society’s general discomfort with people who have disabilities. In reality, the sexual rights and responsibilities of people with disabilities are identical to those of nondisabled people. Everyone, regardless of disability, has the right to sexual expression and the right to develop to the fullest potential in all aspects of life. This lesson will familiarize mental health practitioners with the issues concerning sexuality in clients with disabilities and will improve the effectiveness and sensitivity with which these issues are dealt.

Historically, addressing sexual issues during the rehabilitation process dates back only to the 1 970s when Theodore and Sandra Cole developed the "Sexual Attitude Reassessment’ program (SAR) to train rehabilitation professionals (Cole, Chilgren, & Rosenberg, 1973). These programs focused on communication and the clarification of values.

Their purpose was to increase the practitioner’s level of comfort with and awareness of sexual issues among people with disabilities. The SAR programs were very successful but tended not to provide the counseling skills necessary to assist individuals in their sexual adjustments after disability.

To some extent during the 1970s, the idea of sexual education for people with disabilities was academic. People in the field had begun to recognize the need for sexuality services, but there was little agreement as to how and when these services should be provided. There was also little agreement as to who should provide sexual education. Patients were often discharged from rehabilitation with no information because various members of the rehabilitation team assumed that practitioners of other disciplines had addressed sexual concerns (Ducharme, 1991).

The lack of coordination of sexuality services and the failure to address these concerns during acute rehabilitation perpetuated the erroneous notion that information on sexuality was of little importance to people with disabilities. Ultimately, people with disabilities began to demand further information regarding their sexual functioning and their capacity to have children. Medical and rehabilitation professionals were forced to respond to the needs of their clients.

The theory of developmental tasks was originally discussed by the psychologist Erik Erikson (1953). These developmental stages represent the critical periods of development from birth to death. As individuals move through life, they encounter a number of tasks set by their cultural milieu and by biologic imperatives. These developmental tasks are particularly critical because they must be mastered if children are to develop more mature social and interpersonal skills. When disability occurs, not only are the current developmental tasks threatened, but the person, at least temporarily, regresses to an earlier stage of development. This has broad implications for an individual’s psychological and sexual adjustment. Because the person’s sense of masculinity or femininity is an integral part of these developmental milestones, disability can create confusion and conflict in both gender identity and gender role, identity and role being different aspects of the same process. For people with disabilities, confusion about both gender identity and role can make the adjustment process more difficult, especially without adequate role models and sources of emotional support.

Gender identity is the inner experience of one’s self as male or female; gender role is the outward expression of that identity (Kauth & Kalichman, 1995). Without resolution of these conflicts, more complex tasks, such as the formation of relationships and the achievement of a positive self- esteem, may never occur. Thus, for a person with a disability, a healthy sexual adjustment and the ability to achieve intimacy depends on the successful resolution of developmental tasks at the time of injury or onset of illness.

During puberty and adolescence, the achievement of sexual identity and acceptance in peer group relationships are the goals to accomplish. As the adolescent grows and enters young adulthood, one of the primary tasks is the development of intimacy and the concurrent strivings toward independence. Traumatic injury at this time threatens these important peer relationships and fosters dependency on the family unit. Adolescents with a disability often feel unattractive and ashamed of their bodies. Subsequently, they feel unwanted by the opposite sex and incapable of establishing a meaningful relationship. Without a sense of sexual identity, older adolescents may even lack the ability to make vocational and educational decisions or to assume responsibility for their own behavior. Thus, future emotional growth is threatened (Kewman, Warschausky, Engel, & Warzak, 1997). The developmental process can be further complicated for young people with gay and lesbian orientations. More than simply a matter of having a same sex partner, gay and lesbian identity often is similar in scope to ethnic or racial identity, involving identificanon with the values of a subculture (Nichols, 1988). The process of forming a gay or lesbian identity evolves in stages from confusion and conflict to acceptance. For the person with a disability, the presence of homosexual issues can further complicate an already difficult sexual adjustment.

Aging is also an often overlooked developmental stage (Glover, 1978; O’Connor & Stilwell, 1989). Although the reality is that older adults can continue to be sexually active throughout their life spans, internalized negative attitudes can inhibit sexual expression in later years. The stigma against aging is even greater in the disabled community than in the culture at large and is experienced with fear at earlier ages than for individuals without disability.

Adjustment to a physical disability or illness is a gradual process. The individual must mourn the losses and develop coping strategies that will validate the meaningfulness of the new post-injury life. Successful adjustment depends on the recognition that choice is still available and is influenced by many factors such as type of illness or injury, age at onset, physical health, and quality of social supports.

Successful sexual adjustment requires the same gradual and sometimes painful emotional process. Losses need to be grieved so that the remaining strengths can be developed and nurtured. However, because of different personality styles, not everyone completes this difficult adjustment. Some individuals, for example, may have experienced profound periods of grief and trauma earlier in life due to emotional, physical, or sexual abuse (Lew, 1995). Perhaps there were few emotional supports during childhood and the grieving may have extended for prolonged periods of time. The resolution of pre-disability psychological issues may be necessary for the individual to master the demands and responsibilities of living with a disability.

After a traumatic disability, individuals frequently go through a period of reduced sexual drive or performance. Others go through a period of sexual acting out, presumably to validate their survival and sexual identity. However, substantial numbers of people fail to resume an active sex life after injury due to misinformation, problems of adjustment, or shame regarding body image and functioning (Ducharme et al, 1993). Those that do assume an active sex life after injury are often advised by mental health practitioners to keep separate the roles of sexual partner and care provider (Ducharme & Gill, 1997; Vermote & Peuskens, 1996). Having one’s sexual partner provide intimate medical care can be destructive to the relationship. Mixing these roles often places one member in a needy, helpless position while the other member is perceived as powerful and giving. Such an unequal balance of power in a relationship tends to dilute feelings of intimacy and to be the source of feelings of resentment and anger.

Clients with disabilities who achieve success in their sexual functioning often do so because of increased communication and a willingness to experiment with developing romance and intimacy as well as technique. They are secure enough to realize that not every experiment will work and they value nongenital erogenous zones. They are typically more comfortable with their own bodies and continue to feel a sense of self-worth and self-respect (Ducharme, 1995). As a result, partners also feel validated and perceive the sexual relationship to be warm and caring and a mutually enjoyable experience.

The importance of communication cannot be overstated. The development of skills in communication about sexual topics and methods of pleasure is the single most critical aspect of successful sexual adjustment. Specific and immediate communication between partners can relieve intense feelings of anxiety, fears of rejection, and concerns about physical safety. For this reason, psychological counseling and education about sexuality must emphasize these areas and provide individuals with the opportunity to develop and strengthen these skills.

Inhibited sexual desire, now known as hypoacrive sexual desire disorder, is characterized by persistently low or absent sexual fantasies and desire for sexual activity, not due to a substance abuse or primary psychiatric disorder. The sudden onset of disability or the more chronic issues of malaise, pain, fatigue, or stress can contribute to decreased libido (Gilbert, 1996). Low desire after a traumatic disability is, for the most part, of limited duration.

In addition to traumatic disability, many chronic illnesses can result in inhibited sexual desire, either temporarily or permanently (Bullard, 1988; Kaplan, 1995). Neuroendocrine disorders, cancer, heart disease, renal failure, liver disease, chronic lung disease, drug or alcohol addiction, and multiple sclerosis are among the conditions which can have a physical effect on sexual desire.

The capacity to achieve erections is often altered in men who sustain damage to the central nervous system. This typically includes injuries such as spinal cord injury and stroke as well as progressive disabilities such as multiple sclerosis and diabetes. Men with congenital disabilities such as cerebral palsy and muscular dystrophy typically retain the ability to achieve erections but more often report difficulties in mobility, positioning, and communication. If erections are altered, such as with spinal cord injury, the man may still be capable of reflexogenic erections. Although these erections may not be suitable for penetration, they can usually be achieved and sustained by ongoing manual stimulation of the genital area. Some authors have suggested that techniques such as positioning the flaccid penis in the vagina can be mutually satisfring to the couple. Other health professionals have emphasized the importance of medical interventions to improve erection quality (Ami Sidi, 1988; Basile & Goldstein, 1994; Ducharme & Gill, 1997).

In recent years, procedures such as penile injections, implants, vacuum constrictive devices (that fir over the penis) as well as various surgical procedures have gained increased popularity for men with neurogenic erectile difficulties. Despite problems associated with these various devices, such as scarring, infection, or mechanical failure, clients satisfaction has generally been positive (Mulcahy, 1991). Dissatisfaction has usually been caused by decreased penis size, firmness of the erection, temperature of the penis, or difficulty in manipulating the device. Other couples have reported a loss of spontaneity with love making and a feeling that use of a mechanical device seems unnatural and a deterrent to their sexual expression.

There is much attention paid to the injection of various drugs into the penis, but oral medications to improve erections are clearly the cutting edge in erection research. There will be a tremendous market for such oral medications once FDA approvals have been obtained. Currently, medications, such as Viagra (sildenafil citrate), are used by men with erection problems. Other centers are doing clinical testing on various hormone therapies to improve male sexual functioning. The results of these studies seem very promising and breakthroughs are happening on a regular basis.

As a result of these new procedures, the possibility of parenthood for people with disabilities has changed greatly. Ten years ago, men were often told that fatherhood was not possible after a disability and were discouraged in their hopes of having a child. Currently, if the man with a disability produces sperm, there is the potential for fatherhood. Mental health practitioners who provide education to their patients need to realize that these new procedures are available and that parenthood is possible.

The literature on sexuality for women with disabilities has historically lagged behind the research being conducted for men with disabilities. Some authors have suggested that age old myths regarding female sexuality, cultural stereotypes, and the low incidence of traumatic disability of women are to blame (McCluer, 199 l).This situation is changing as women’s sexuality and wellness have become an increasing priority for funding sources. These sources include the National Institute on Disability and Rehabilitation Research and the National Institute for Health. Despite the growing attention, there are still many unanswered questions that have far reaching implications for the woman with a disability.

For the most part, changes in the female genital tract are most common after neurologic trauma or disease. These changes may affect vaginal lubrication, labial swelling, clitoral swelling and regression, and the perception of orgasm. Most of the reports on female sexual changes following disability tend to be anecdotal with little scientific basis. Since many of the findings tend to be self-reports, some researchers have suggested that the existing data is insufficient to obtain quantifiable data on sexual arousal.

One of the few scientific studies that examined sexual relationships following spinal cord injury was conducted by Sipski and Alexander (1993). They questioned 25 female spinal cord injured patients about sexual activities and frequency of sex pre- and post-spinal cord injury. Forty percent of their subjects resumed sexual activities within 6 months of injury and an additional 24% resumed sexual activity within two years of injury. Frequency of activity was documented to decrease after the onset of disability. Whereas 64% of women had engaged in sexual activity at least weekiy pre-injury, only 48% were sexually active at least weekly post-injury. The number of sexual partners was also evaluated and no significant difference was noted pre-injury vs. post-injury for the group as a whole or based on neurologic injury. Finally, whereas sexual intercourse was the woman’s favorire sexual activity pre-injury, kissing, hugging, and touching were preferred post-injury.

Many aspects of a woman’s sexuality may be altered after a traumatic injury, including libido or desire, arousal, response, and specific sexual behaviors. Complications

encountered by women with traumatic disabilities include: management of autonomic hyperreflexia (drastic changes in blood pressure), management of bowel and bladder continence, and management of spasticity. For women with multiple sclerosis and spinal injury, lubrication may become reflexogenic, facilitating penetration of the vagina. Changes in desire and arousal may result from the impact of changes in her physical status and her perception of herself, from role changes that may occur as a result of injury, or from the anger and depression that often accompany the onset of a disability (Whipple, 1991).

Current research on female sexuality is exploring issues related to vaginal contractions; intensifying perception of orgasm; and stimulating vasodilatation of the pelvic region. All require further investigation, but the research indicates a renewed interest in the field and a commitment to understanding female sexuality and disability. Most importantly, newer research provides a renewed sense of hope for women with disabilities, offering important applications for clinical practice (Whipple, 1991).

Of special note in the current women’s research is data regarding orgasms in women with spinal cord injury. Sipski and Alexander (1995) have demonstrated that a large percentage of women with spinal cord injury achieved orgasm regardless of pattern or degree of neurological injury (Sipski, Alexander, & Rosen, 1995). Furthermore, they have ascertained that no consisrent characteristics have been identified that would allow the prediction of which women with spinal cord injury would be able to achieve orgasm. This data seems to indicate that sexual education for women regarding their sexuality plays an important role in their overall sexual adjustment and is a determining factor in their general sexual satisfaction. These studies have had vast implications on previous assumptions regarding women with disabilities and have sparked renewed interest in the physiological sexual responses in women following the onset of disability.

The issue of birth control is somewhat problematic for women with disabilities. Zasler (1988) suggests that in the age of AIDS, the choice is no longer so controversial; unless the relationship is monogamous and long standing, the safest method is a thick latex condom with a spermicidal foam or jelly containing nonoxynol-9. The combination of a diaphragm and foam also reduces the risk of pregnancy, but nor STDs. However, the limited dexterity of many women with disabilities makes it difficult to insert and remove. Reduced sensation also prevents detection of an incorrectly placed diaphragm, which might cause irritation and subsequent bladder infection. The partner or personal care attendant in these cases might assist in placing the device (McCaren, 1989).

To improve the sexual satisfaction of women with disabilities, new treatments must be developed and documented. New data on reproduction and wellness must be communicated to women who have disabilities. These may include medical treatments such as the use of biofeedback and vibratory stimulation or psychological approaches such as patient education or new forms of sexual counseling (Sipski & Alexander, 1995). Only then will women begin to have the information that they deserve regarding their bodily processes and their sexuality.

Education in sexuality is a critical feature of any training for mental health professionals. Sexuality education should also be considered essential for any comprehensive counseling and rehabilitation program. This should include workshops aimed at values clarification as well as those that provide specific information on disability and sexuality. In addition to the training curriculum, administrative support of the sexuality program must be evident to staff members, patients, and their families. This administrative approval establishes a positive therapeutic environment with openness, empowerment, and caring as the foundations of the counseling process.

In addition to processing personal feelings about sexuality, specific information on sexuality and disability must also be taught to staff members. Without up-to-date information, staff members will only add confusion to an already difficult topic. Even worse, the patient and his or her partner could be given incorrect information that would have a negative effect on their relationship and their overall adjustment. An ongoing lecture series is often helpful in this regard. Typical issues addressed in such a program include sexual anatomy and physiology, effects of medicanons, physical functioning, treatment options, counseling techniques, professional roles, and gay and lesbian issues.

The development of a sexuality committee within a facility is often the method of choice in addressing ongoing sexual issues and problems (Ducharme & Gill, 1990). Ideally, a member of the administration should serve on the committee. This validates the committee’s function and provides a sense of security, safety, and recognition to its members. The development of institutional guidelines and procedures is usually the first task of the committee and often its most important function. It is essential that the committee establish guidelines on some of the most sensitive interactions that occur in the day to day functioning of the institution. Issues to be addressed typically include whether to establish a privacy room; masturbation; partner sexual activity; dissemination of birth control information and supplies; prevenrion of sexual assault; prevention of sexually transmitred diseases; and policies concerning the relationships between clients and staff members.

In-service education programs often will raise concerns about staff-client interactions. This is usually the primary area of staff anxiety and sensitive discussion is most often welcomed and appreciated. In addition, an overview of behavior modification techniques can be helpful. This should be geared especially around sexual issues and should be combined with theoretical discussions of reinforcement schedules and behavioral contingencies. Finally, the importance of limit-setting and professional boundaries should be discussed and emphasized.

For people with disabilities, there are multiple restricnons on the expression of sexuality. These stem from cultural biases, social ignorance, and unfounded fears regarding the person with a disability. For homosexual men and women, these fears and biases are significantly intensified and there is a serious lack of information and resources available in the area of sexual health. The responsibility of medical professionals is to achieve a balance between protecting the rights and privacy of hospitalized patients and providing a safe and enriching environment. As mental health practitioners and staff members are retaught to refrain from imposing restrictive values and excessive control on clients, a therapeutic environment that fosters self-esteem and sexual growth will unfold.

In the last decade, we have witnessed tremendous progress in the areas of sexuality and disability. However, there is much left to be done so that all men and women are included in this revolution. What once began as a passing fad outside of mainstream rehabilitation has now become an accepted standard of practice. Education about sexuality and disability is a critical component of the rehabiliration process.

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