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Sexuality education for persons with developmental disabilities: a cooperative approach.

One of the basic needs of life for all people, including those who are disabled, is understanding one's own sexuality. Sexuality education can help individuals with developmental disabilities find sexual satisfaction, foster responsibility, maturity, and positive actions toward various rehabilitation goals (McNab, 1978). While the focus of this article is on individuals with mild and moderate mental retardation, topics and techniques described are applicable to students with other developmental disabilities. The term developmental disability, as defined by the amended Developmental Disabilities Assistance and Bill of Rights Act of 1987, means a severe chronic disability of a person attributable to a mental or physical impairment which reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated.

Traditionally, teaching of sexuality to individuals with developmental disabilities has met objections resulting from society's negative attitude toward the disabled and parental apprehensions regarding decision-making skills of their children in relation to acceptable and unacceptable sexual behaviors. Indeed, some parents of children with disabilities view their children's sexual interests and/or needs as another crisis of parenting rather than a stage of development.

With increasing emphasis on independent living, individuals with developmental disabilities have greater needs for sexuality education. Health and physical educators along with special educators should be collectively involved in developing and implementing appropriate sexuality education programs which help persons with developmental disabilities achieve a more positive self-concept and greater independent living status. This instruction should take place in health, physical education, and special education classrooms on a concurrent basis.

To accomplish these goals, this article focuses on the following areas:

* Why sexuality education for persons with development disabilities?

* Sexuality issues, content, and behavior considerations;

* Collaboratovie role of health, physical, and special educators; and,

* Available resources.

Why Sexuality Education for

Persons with Developmental

Disabilties?

Understanding one's own sexuality is a basic need for positive physical and metal health. Sexuality is ability to feel and give warmth and love, development of a positive self-concept, and being able to make responsible decisions regarding physical, mental, emotional, and social aspects of one's sexual health (McNab, 1981). Sexuality is one of the most wonderful aspects of life that everyone has the right to experience and enjoy. Dickman (1985) stated, "A growing number of mentally and physically disabled people are proving that they are neither sexless, nor perverted, nor helpless dreamers." Like everyone else, people with developmental disabilities want to experience and enjoy positive aspects of their sexuality.

Two contradictory assumptions are often put forth regarding sexuality and people who are developmentally disabled:

* Persons with developmental disabilities are not interested in sex; and,

* They are too interested in sex in perverse, abnormal ways (Dickman, 1985).

The first assumption identifies persons with developmental disabilities as asexual and unable to have sexual feelings and relationships. This unfounded assumption often inhibits support for and interest in developing sexuality education programs for person with developmental disabilities.

In the second assumption, a person who is a developmentally disabled individual is viewed as someone who has abnormal interest in sex that may manifest itself in inappropriate public behavior or other types of sexual misconduct. Some educators, parents, and other concerned adults may believe sexuality education could stimulate sexual feelings in persons with developmental disabilities and thus possibly lead to inappropriate behavior. Johnson (1973) succinctly described the dilemma of persons with mental retardation in stating:

The mentally retarded do indeed tend to be mentally retarded with respect to sex education, and this is one of the characteristics that they share most fully with the brilliant and so-called normal. Nearly all of us are ignorant about sex; and many intelligent people are not even educable or trainable in this respect. Unfortunately, some of these sexually-uneducable people are supposed to instruct or otherwise manage the lives of the retarded regarding sex.

A majority of the population with mental retardation in the United States is mildly retarded; 95% are living in communities and 50% will marry (Dickman, 1985). These individuals, like non-disabled, are exposed to sexual stimuli through media and peers, develop secondary sex characteristics including sexual feelings, and experience social interaction associated with physical sexual responses. A developmental disability does not necessarily alter physical and emotional development.

Ignoring sexuality of people who are developmentally disabled may slow down but not eliminate sexual development. In today's society, not only is it their right to learn about and experience positive aspects of sexuality, but it is a necessary life skill. With new responsibilities related to increasing independent living opportunities, individuals with developmental disabilities are experiencing more life situations that require skills related to sexuality issues. Yet many still receive little education and training related to sexual knowledge and behavior.

In addition to specific life skills, sexuality education can help promote positive self-esteem in individuals. Whittaker (1987) stressed that persons who are disabled do not need to like their disability but do need to like themselves. Promoting self-esteem through sexuality education can enable students to recognize and accept positive aspects of human sexuality in themselves and others.

Sexuality Issues,

Content, and Behavioral

Considerations

Determining course objectives and content are important first steps in developing sexuality education programs of any population. Daily (1988) identified five components of sexuality which need to be included in sexuality education for persons with development disabilities:

* Sensuality - allow individuals to be aware of and in touch with their bodies, and have a positive attitude toward the image they have of their bodies.

* Intimacy - demonstrate emotional closeness, and ability to share, care, love, and touch to satisfy physical human contact;

* Identity - relate to sex roles and independent living skills;

* Reproduction and birth control - give appropriate information;

* Sexualization - present positive and negative ways in which sexuality influences others.

Persons with developmental disabilities have basic sexual rights. These rights should be considered when determining course content. Sexual rights include privacy during sexual activities and knowledge of various types and effectiveness of birth control methods, including where to obtain and how to use these methods. Other rights include learning how to avoid exploitative sexual behavior and using available counseling services and resources.

Numerous educators have identified specific topics for inclusion in sexuality education programs for persons with mental retardation. Fisher (1974) stated that most individuals who are mentally retarded are capable of learning to confine sexual activity to appropriate and safe times and places. Gordon (1971) believed that the following basic principles regarding acceptable or unacceptable behavior must be taught to persons with mental retardation:

* Masturbation is a normal expression of sex, regardless of how frequently it is done and at what ages. It becomes a compulsive, punitive, self-destructive behavior largely as a result of guilt, suppression, and punishment.

* All direct sexual behavior involving genitals should be done in private.

* Any time physically mature people have sexual relations they risk pregnancy.

* Unless they are clear about wanting to have a baby and about responsibilities that go with child rearing, both male and female should use birth control.

* Until an individual is, say, 18, society feels a person should not have intercourse. After this, the individual decides, providing birth control is used.

* Adults should not be able to use children sexually.

* In final analysis, sexual behavior between consenting adults--regardless of mental age and whether it is homo-or hetero-sexual--should be no one else's business, providing there is little risk of bringing a child into this world.

Edwards (1975) has identified numerous sexuality education topics including:

* Communication skills

* Public vs. private behavior

* Self-image awareness

* Social Skills

* Dealing with strangers

* Puberty

* Wet dreams

* Masturbation

* Menstruation

* Naming body parts

* Feelings relating to self and other

* Sex roles

* Dating

* Love and relationships

* Intercourse and birth control

* Sexually transmitted diseases

* Marriage and parenting

* Rape and molestation prevention

* Independent living and decision making skills

Whenever possible, student/client input into content decisions should be considered. Andron (1984) asked 20-37-year-old students with mental retardation who had taken a family life education course what they thought should be taught in sexuality education classes. The following topics were suggested:

* Appropriate social behaviors

* Communication skills

* Learning about people's feelings

* How not to get pregnant

* How to obtain and use contraceptives

* How to prevent sexually transmitted diseases

* Less on the physiological aspects of sexuality and more material on how to get along with people

* How to make your own decisions

These students believed they were not exposed to sexuality education because people feared they might not be able to handle the information, and it would encourage their own interest in sexual activity. Students felt it was their right to obtain information about their sexuality.

AIDS is another important topic which should be covered. In February of 1989, a National Forum of HIV/AIDS Prevention Education for Children and Young with Special Needs was hosted by the Association for the Advancement of Health Education in collaboration with the Council for Exceptional Children. Representatives from more than 25 national organizations and governmental offices assessed HIV/AIDS education pertaining to the needs of special education students. A few of the many conclusions were:

* All children, including special education students, need health education, including HIV/AIDS prevention education.

* Health educators and special educators need to work together in delivery of HIV/AIDS prevention education for children and youth.

* Misunderstandings and misconceptions about HIV/AIDS need to be clarified for professionals, parents of children with special needs, and children with special needs.

* HIV/AIDS prevention curriculum and materials should be developed or modified so that the different types of disabilities-- cognitive, sensory, physical, behavioral--are addressed.

* Objectives on HIV/AIDS prevention education should be written into Individualized Educational Plans (IEP).

* HIV/AIDS prevention should focus on behavior.

Topics identified in this article, whether identified by students or professionals, are topics important in sexuality education programs for any population. For students with developmental disabilities, teaching of this content must be modified. Smigielski's (1981) considerations for modification include:

* Using task analysis to simplify manner in which material is presented.

* Using concrete materials students can see and feel.

* Allowing students to practice fundamental social skills.

* Including activities which promote self-sufficiency, overcoming fear, gaining self-confidence, and coping with responsibility.

* Adjusting and modifying objectives.

* Simplifying methods and analogies.

* Using a variety of audiovisual materials.

Using these approaches, the basic educational objective should be to convey to students with developmental disabilities that their sexuality is unique, special, and a positive part of their relatives (McNab 1989).

Roles of Health,

Physical, and Special

Educators

Teachers responsible for sexuality education programs for students with developmental disabilities should have the necessary background in both sexuality and special education. Torbett (1985) stated that while teachers, who study special education, "learn a great deal about the methods, techniques, and problems of handicapped chilren, they have had little preparation for dealing with sexual questions, concerns and feelings of their students." Conversely, Dickman (1985) stated, "few trained sexuality education teachers are familiar with special needs of disabled children or the special techniques necessary for teaching them." These statements highlight need for interdisciplinary collaboration among health educators, physical educators, and special educators. Described below are some specific recommendations for collaborative action.

* University preparation programs in school health and physical education should include a course that deals with exceptionality, special education processes such as PETs and IEPs, and teaching techniques and resources for special needs students.

* Undergraduate special education majors should be required to take a course that includes sexuality education principles and teaching techniques.

* In-service programs similar to those in the prior recommendations should be developed for health and physical educators and special educators currently teaching.

* Whenever possible, health and physical education majors participate in student teaching experiences that include special education classes.

* Health and physical educators and special educators in school settings should be collaboratively analyze individual sexuality education needs of special education students and develop appropriate programs. Once developed, such programs could take place in either special education classrooms, health and physical education classrooms, or combinations of the two.

* Importance and potential impact of sexuality education should be promoted among administrators.

* Sexuality education resources should be developed that are appropriate for different disabled populations; this may require health and physical education/special education collaboration.

* Research should be conducted to determine appropriateness and effectiveness of sexuality education programs for students with developmental disabilities.

* Professionals of both disciplines should present and/or publish information pertaining to programs, methods, resources, and research dealing with sexuality education for students with developmental disabilities.

Summary

Sexuality education programs can assist individuals with developmental disabilities to live independent lives. To maximize successful planning, development, and implementation of such programs, professional collaboration is needed among health, physical, and special educators. Through such programs, it is hoped that persons with developmental disabilities will reach the goal identified by Perski (1973) to "achieve the highest potential on the continuum of sexual development."

Sexuality Resources for Teachers of Students with

Developmental Disabilities

Birch, D.B. (1987). Developing health skills. Portland, Maine: J. Weston Walch. (Designed to help special educators and health educators conduct health education programs for midly and moderately retarded students and other non-readers.)

Brekkle, B. (1988). Sexuality education for persons with severe development disabilities. Santa Monica: James Stanfield, (A seven-part program with 500 slides emphasizing parts of the body, social behavior, and medical examinations.)

Champagne, M. and Walker-Hirch, L. (1988). Circles I (intimacy and relationships), Circles II (stop abuse), Circles III (safer ways - communicable and sexually transmitted diseases). Santa Monica: James Stanfield. (Slide or video format.)

Cowardin, N. and Stanfield J. (1989). Life Facts I - sexuality. Santa Monica: James Stanfield. (Thirty-three lesson plans on biological, behavior, sexual and relationship aspects of sexuality.)

Dickman, I.R. (1985). Sex education for disabled persons. (No. 531). New York: Public Affairs Pamphlets.

Human Science Press. Sexuality and disability. New York, NY (A quarterly journal.)

Johnson, W.R. and Kempton, W. (1981). Sex education and counseling for special groups: the mentally and physically disabled, ill, and elderly. Springfield, IL: Charles C. Thomas.

Kempton, W., Bass, M.S., and Gordon, S. (1985). Love, sex, and birth control for mentally handicapped people - a guide for parents. Philadelphia: Planned Parenthood of Southeastern Pennsylvania.

Kempton, W. (1988). Sex education for persons with disabilities that hinder learning. Santa Monica: James Stanfield. (Excellent overall resource for teachers.)

Kempton, W. (1988). Life horizons I and II: sexuality and the mentality handicapped. Santa Monica: James Stanfield. (Twelve programs on slides dealing with anatomy, birth control, sexually transmitted diseases, self-esteem, dating, marriage, and parenting.)

Lexington Center Child Abuse and Disabled Children Program, (1989). No-go-tell. Santa Monica: James Stanfield. (Child protection curriculum for special needs children ages 3-7.)

Lippen, D. and Randell, D. (1986). Family life education - a manual for special education. Fair Lawn, NJ: Lippin and Randall. (Personal growth and development activities.)

O'Day, B. (1983). Preventing sexual abuse of persons with disabilities - a curriculum for hearing impaired, physically disabled, blind and mentally retarded students. Santa Cruz: Network Publications.

Sex Education Information and Education Council of the U.S. (1986). Sexuality and disability: a bibliography of resources available for purchase. New York: New York University.

Stanfield, J. (1990). Being with people-a social skills training program. Santa Monica: James Stanfield. (An eight-part video series teaching social skills.)

Young Adult Institute, (1988). AIDS and the mentally retarded. New York, NY (Explicit video on the prevention and spread of AIDS.)

Selected References

Andron, L. (1984). They don't teach us becuase they don't want us to learn. Family Life Educator, 3 (1), 18-20.

Daily, D.M. (1988). Sexuality and relations. Abilities: Canada's Journal of the Disabled, 1 (1), 20-21.

Dickman, I.R. (1985). Sex education for disabled persons. (Public Affairs Pamphlet No 531) 381 Park Avenue, New York, NY 10016, p. 1.

Edwards, J. (1975, March). Sex education for the handicapped. Paper presented at the meeting of the American Alliance of Health, Physical Education, Recreation, and Dance, Seattle.

Fisher, J.L. and Krajieck, M.J. (1974). Sexual development of the moderately retarded child. Clinical Pediatrics, 13: 78-83.

Gordon, S. (1971) O.K., let's tell it like it is. Journal of Special Education, 5 (4), 351-354.

Johnson, W.R. (1973). Sex education for the mentally retarded. de la Cruz, F.F., La Veck, G.D. (ed). Human sexuality and the mentally retarded, New York: BrummerMazel.

McNab, W.L. (1978). The sexual needs of the handicapped. Journal of School Health, 48 (5), 301-306.

McNab, W.L. (1981). Advocating elementary sex education. Health Education, 12 (5), 22-25.

McNab, W.L. (1989). From where I sit. Family Life Educator, 7 (3), 14-15.

Perske, R. (1973). About sexual development: An attempt to be human with the mentally retarded. Mental Retardation, 11 (1).

Smigielske, P.A. and Steinmann, M.J. (1981). Teaching sex education to multiply handicapped adolescents. Journal of School Health, 5 (4), 238-241.

Torbett, D. (1985). In Dickman I.R. Sex education for disabled person. (Public Affairs Pamphlet No. 531.) 381 Park Avenue New York, NY 10006, p. 14.

David A. Birch is coordinator of the Penn State University Western Region Health Education Graduate Program. He has an extensive background in teacher training in health education, including programs for special educators.

Warren L. McNab is professor and coordinator of Health Education at the University of Nevada, Las Vegas. Dr. McNab received his BS and MS degrees in health education from Mankato State University and a PhD from Southern Illinois University. He teaches university level courses on human sexuality and has written extensive in his speciality--adolescent sexuality and health.
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Title Annotation:includes directory of organizations, and resource guide
Author:McNab, Warren L.; Birch, David A.
Publication:Palaestra
Date:Jun 22, 1991
Words:2897
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