Tom, 18, likeable and energetic, is in a special class for the mentally retarded (EMR). He makes telephone calls — frequently to various areas of the country — to women whose photos appear in popular, explicit magazines and invites them to his house for drinks. Tom also invites his female teachers.

It’s often difficult for parents of children with retardation to talk to their children about the “facts of life.” So, Tom’s parents, motivated by their concern for his bizarre behavior, sought psychotherapy for him. Society expects retarded individuals to adopt socially acceptable behavior and to control their sexual impulses, yet our culture offers them almost no training to handle sex in a responsible manner. There is a severe lack of sexuality programs available to disabled persons in rehabilitation facilities, hospitals and schools. Few schools have family life or sex education for the “special” student. The reasons for this situation are legion. Fear, ignorance and anxiety have led many healthcare professionals to avoid the sexual concerns of their patients. These barriers are to be expected while we make our way through the infant stages of sexual rehabilitation. But, attempts should be made to seek sources of sexual education and counseling that are not based in a rehabilitation facility or institution. Private practice is also an option.

Sexuality is a holistic concept that involves many important aspects of the personality, not just the genitals. For instance, in one private practice, over 85 percent of clients, 75 percent of whom were without partners or spouses required counseling not specifically related to genital dysfunctions. These disabled clients’ concerns revolve around relationship fears, social-skills development, body image and parental prohibitions related to sexual behavior.

Tom’s progress

As counseling progressed between Tom and his therapist, Tom’s father began to discuss with him acceptable social conduct.

Counseling sessions focused on issues that included learning alternate ways of approaching young women.

Tom had great difficulty trying to satisfy his desire to have a girlfriend. His only opportunities to pursue this goal came on alternate weekends when he met for a few hours with a group of young adults with a similar disability. These meetings, although helpful in many ways, were structured and allowed little chance for private one-to-one interaction. Even if he was successful in arranging a casual date, transportation problems and travel restrictions placed on Tom by his parents greatly minimized a possible meeting.

Tom’s parents also feared that he might impregnate a local girl and cause a scandal. During a counseling session, he learned about human reproduction and the use of contraceptive devices. Subsequently, his parents also instructed him in that area. Tom and his parents became comfortable talking about sensitive topics as further discussions took place regarding human sexuality.

Tom’s counseling focused on three major areas: inappropriate behavior, his lack of socio-sexual information and his parents’ limited understanding of their son’s social needs and sexual feelings.
If parents or schools provide sex education, it is important that this learning process begin much earlier than the late teens, preferably a few years pre-puberty. In Tom’s case, his parents seemed amazed that their son’s sexual interests emerged at age eighteen.

Other case studies

Jim, 25, suffered a traumatic head injury in a motorcycle accident at age 21 and relied on a walker or wheelchair. His right arm was flaccid, but his left arm was muscular and fully functional. He spoke slowly and with great difficulty.

Jim’s parents took him for counseling after they’d learned that he’d propositioned several female home-health aides. He would ask women he met to go on a date shortly after saying hello.

During counseling, Jim acknowledged that he was able to maintain a full erection and ejaculate without difficulty. He masturbated daily. A lack of transportation, few barrier-free gathering places and his often-lethargic attitude limited his social contacts.

Jim was plagued by frequent suicidal ideation. When questioned regarding the source of these self-destructive thoughts and feelings he said, “I’m not getting laid as much as I used to.”
The significance of the pre-morbid personality to the adjustment to a disability is undeniable. The sexual behavior of an individual before the onset of a disability may be a salient factor in socio-sexual readjustment. Many young men place the highest priority on their ability to perform sexually. The decrease or cessation of sexual behaviors once revered may foster depression and social isolation.

Counseling sessions focused on masculinity issues and acceptable ways of meeting women. Because accessible social gathering places were limited, disabled and non-disabled groups that offered several possibilities were contacted. To assist Jim in building self-worth, discussions included what he could do now instead of on the abilities that he had lost. Graduated risk-taking experiences, including speaking at a class on sexuality and disability helped Jim to build his confidence.

Gina

Gina, an attractive fifteen-year-old has a congenital hearing loss and cerebral palsy. She has no functional use of her left arm. She attends a school for the deaf near her home.

Gina’s mother was concerned when she noticed that her daughter was not interacting socially with other teens (especially boys) at school. At home, she was short-tempered and frequently irritable.

In counseling sessions, Gina revealed that the hearing-impaired boys at school rejected her because they thought that she was mentally retarded. “They would go out with me if I was just deaf,” she said. The young boys apparently associated the physical symptoms of Cerebral Palsy with retardation. Researchers Anderson and Cole reported that “the conspicuously disabled person is often stereotyped as being mentally retarded.”

Gina’s adolescent traumas were further aggravated by the fact that her parents were in an acute stage of marital separation. The rejection that Gina felt while in school was also experienced to a greater degree at home. She reported that her mother and father wouldn’t take the time to try and understand her communications. She said that she was caught in the middle of their frequent fights, and that her brother and sister ridiculed her.

When discussions focused on Gina’s feelings about herself she exclaimed, “I’m perfect; I just need deaf parents” and “I’m a healthy girl but others sometimes make fun of me.”

Familial influences can have a destructive effect on one’s sense of self-worth. Perceptions of self-worth, whether positive or negative, are central to social and sexual development.

Counseling tactics involved building Gina’s self-esteem by providing a realistic look at the limitations imposed by her disabling conditions. A strong bond between the therapist and the client also contributed to positive feelings and acceptance.

Matt

Matt, 27, was referred for counseling to help him improve his social life. He had previously been diagnosed as schizophrenic, chronic undifferentiated type. Testing revealed a borderline I.Q. Matt, who has a history of hospitalizations presently resides at his mother’s house while receiving ECT and medication at a local healthcare center. During intake, he experienced auditory hallucinations that made information gathering difficult; his delusional system was quite active. He repeatedly conveyed a fear of people and an unwillingness to leave the house. “I’m afraid of girls because I don’t know how to have sex,” he said. “I have to have a doctor examine me before I have sex so I know that the blood won’t go to my brain and cause a clot — I don’t want to be killed.” Matt said that he masturbated eight times a day.

Matt’s therapist determined that sex counseling was inappropriate at the time of the client’s referral. According to Sanders, people with schizophrenia are likely to respond well to sex therapy if they are in no psychic danger and if they are in the stable phase of their illness. He further stated that the confused, upset and disorganized patient is in no shape to benefit from such therapy.

When dealing with psychiatric patients, whether as inpatients or outpatients, it is important to consider several factors. These factors include the relationship between the specific disorder (i.e., schizophrenia) and sexual behavior; the affect of somatic treatments (e.g., Drugs, ECT) on sexual behavior; and the import of a complete environmental change from hospital ward to community.

Counseling strategies

Some sexual problems of the disabled may be eliminated simply by providing accurate information or by dispelling popular myths. When dealing with sexuality issues, it is important to have an awareness of the many factors that influence sexual behavior. Questioning the client about religious, educational, biological, social and familial aspects of the client’s life may yield valuable clues to his or her current problems. A substantial amount of time spent on a comprehensive intake is not wasted.

Complex and structured approaches are required when the sexual concern is a symptom of persistent psychological dilemmas. These disturbances may be the consequence of early childhood traumas, dysfunctional family systems and intra-psychic conflict.

Tom and Jim’s cases required many meetings with their parents in addition to structured individual sessions with the clients. Gina’s treatment was abruptly interrupted after ten sessions when her father, who shared custody, insisted that there was no need for this type of intervention. Matt was referred for psychiatric treatment and evaluation after the initial intake session.

Specific issues discussed in these sessions focused on body image, parental guilt, commitment anxiety, appropriate behavior, normality and self-esteem. Most often, a cognitive/behavioral approach was used for treatment. In addition to information given in each session, homework was assigned designed to promote risk taking, a focus on residual abilities and communication skills. Intermittently, Rational Emotive techniques were used specifically to eliminate erroneous, irrational beliefs.

Training and credentials

Ideally, education in medicine, rehabilitation, sexuality and psychology would be valuable to the private practitioner who provides sex counseling and psychotherapy to disabled clients. Since few professionals have this combined expertise, the therapist should form a network of colleagues that he or she can call upon for periodic consultations. Suggested members of this network would include a physiatrist, family therapist, psychiatrist, rehabilitation counselor, sex therapist and psychologist. Frequent discussions are recommended to enhance the therapist’s existing knowledge and to minimize errors during counseling sessions. This concept is similar to using a multi-disciplinary board.

Obviously, this advisory board is not to be used to fill in major gaps in the therapist’s training. Sexuality training and certification should be pursued through various organizations like the American Association of Sex Educators, Counselors and Therapists. The Sex Information and Education Council of the United States is also an excellent source of relevant information. The practitioner should have an advanced degree in a health field and extensive experience with groups of individuals who have disabling conditions.

When counseling the disabled (as well as the non-disabled) in the area of sexuality, it is of paramount importance to conceptualize sexuality as an entity that is influenced by as many elements as the human personality. It is also important to be aware of the several factors that affect overall adjustment to a disability: severity, visibility, times of onset, pre-morbid personality, reactions of significant others and constraints imposed by the physical environment.

The therapist should cultivate sources of referral other than those mentioned previously. Physicians would be an excellent source for new clients. Cardiologists, orthopedists, neurologists, physiatrists, etc., often deal with patients who require sexual readjustment counseling.
Through adequate supervision and training, the private practitioner can provide a valuable service to many disabled clients who have traditionally been denied the right of sexual fulfillment.

John Ostwald, MS, is an educator, trainer and clinician whose work has been presented at national conferences, healthcare facilities, radio and television. He is former executive director of Disability Consultants. He is a faculty member at Hudson Valley Community College in Troy, N.Y., where he also maintains a private practice.

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