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Sexuality Education for Children and Youth with Disabilities

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ABSTRACT

Today, due to the work of advocates and people with disabilities over the past half-century, American society is acknowledging that people with disabilities have the same rights as other citizens to contribute to and benefit from our society. This includes the right to education, employment, self-determination, and independence. We are also coming to recognize --albeit more slowly -- that persons with disabilities have the right to experience and fulfill an important aspect of their individuality, namely, their sexuality. As with all rights, this right brings with it responsibilities, not only for the person with disabilities but also for that individual's parents and caregivers. Adequately preparing a child for the eventuality of adulthood, with its many choices and responsibilities, is certainly one of the greatest challenges that parents face.

Each year hundreds of families and professionals contact NICHCY with questions about the social-sexual development of children with disabilities and how to contribute positively to the growth of their children in this area. This NEWS DIGEST has been developed to address the concerns that parents and professionals face in informing and guiding children and youth adults with disabilities in their social-sexual development and in preparing them to make healthy, responsible decisions about adult relationships. Because of the complex nature of the subject matter, this NEWS DIGEST has been organized in a different way from other issues. It is intended to serve largely as a resource document, pointing parents and professionals to many of the excellent books and videos on human sexuality that are available. When providing education about the development and expression of sexuality, there is no substitute for the detailed illustrations and discussions that many of these books contain. Each of the sections in this NEWS DIGEST presents an overview of important points to consider when providing sexuality education, then concludes with an extensive list of materials that families and professionals can use to inform themselves more fully. These materials can also be used to facilitate discussion with children and youth about sexuality. In this way, families and professionals can address the unique needs of the youth with whom they are working, while also approaching sexuality education in ways that reflect the deeply personal beliefs that they may hold in regards to these matters.


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Some Quotes from Parents

"My daughter's 13 and she's taking sex ed at school. She came home yesterday and started asking me questions. She'd seen a movie in class and hadn't really understood it -- it went too fast, and she was too embarrassed to ask questions. So we sat down and I explained in real basic terms and showed her a few pictures from the encyclopedia. I never thought that having a learning disability was going to make it hard for her to learn about sexuality. And it also made me think of my own mother telling me about sex when I was 10 or so.l I wonder if my mother felt as awkward talking to me as I felt talking to my daughter. Probably."

"I remember the day my father explained to me about getting a woman pregnant. I didn't understand it all, but I sure understood his point: Be careful! I told my son the same thing, but we both knew it was unlikely. He killed me when he said, But Dad, no girl's gonna want to go out with me."

"When my daughter got her period, I don't know which I felt more -- terrified or proud. This means she's turning into a woman. And that means she can get pregnant. I go back and forth on it. Since she's mentally retarded, it's been hard to teach her about caring for herself when she has her period, but now she's so proud that she can manage mostly without my help. I wish that were all she had to learn about taking care of herself in this world!
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The natural course of human development means that, at some point in time, children will assume responsibility for their own lives, including their bodies. As the above quotes from parents show, parents face this inescapable fact with powerful and often conflicting emotions: pride, alarm, nostalgia, disquiet, outright trepidation, and the bittersweetness of realizing their child soon will not be a child anymore. Indisputably, the role that parents play in their child s social-sexual development is a unique and crucial one. Through daily words and actions, and through what they don t say or do, parents and caregivers teach children the fundamentals of life: the meaning of love, human contact and interaction, friendship, fear, anger, laughter, kindness, self-assertiveness, and so on. Considering all that parents teach their children, it is not surprising that parents become their children's primary educators about values, morals, and sexuality.

For many reasons, some personal and some societal, parents often find sexuality a difficult subject to approach. Discussing sexuality with one's child may make parents uncomfortable, regardless of whether their child has a disability or not, and regardless of their own culture, educational background, religious affiliation, beliefs, or life experiences. For many of us, the word sexuality conjures up so many thoughts, both good (joy, family, warmth, pleasure, love) and fearful (sexually transmitted diseases, exploitation, unwanted pregnancies). For parents with children who have disabilities, anxieties and misgivings are often heightened.

Unfortunately, there are many misconceptions about the sexuality of children with disabilities. The most common myth is that children and youth with disabilities are asexual and consequently do not need education about their sexuality. The truth is that all children are social and sexual beings from the day they are born (Sugar, 1990). They grow and become adolescents with physically maturing bodies and a host of emerging social and sexual feelings and needs. This is true for the vast majority of young people, including those with disabilities. Many people also think that individuals with disabilities will not marry or have children, so they have no need to learn about sexuality. This is not true either. With increased realization of their rights, more independence and self-sufficiency, people with disabilities are choosing to marry and/or become sexually involved. As a consequence of increased choice and wider opportunity, children and youth with disabilities do have a genuine need to learn about sexuality -- what sexuality is, its meaning in adolescent and adult life, and the responsibilities that go along with exploring and experiencing one's own sexuality. They need information about values, morals, and the subtleties of friendship, dating, love, and intimacy. They also need to know how to protect themselves against unwanted pregnancies, sexually transmitted diseases, and sexual exploitation.

What Is Sexuality?

According to the Sex Information and Education Council of the U.S. (SIECUS):

"Human sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals. It deals with the anatomy, physiology, and biochemistry of the sexual response system; with roles, identity, and personality; with individual thoughts, feelings, behaviors, and relationships. It addresses ethical, spiritual, and moral concerns, and group and cultural variations." (Haffner, 1990, p. 28)

One of the primary misconceptions that society holds about human sexuality is that it means the drive to have sexual intercourse. While this may be part of the truth regarding sexuality, it is not the whole truth. As the above statement shows, human sexuality has many facets. Having a physical sexual relationship may be one facet of our sexuality, but it is not the only one or even the most compelling or important. Sexuality is, in fact, very much a social phenomenon (Way, 1982), in that all of us are social creatures who seek and enjoy "friendship, warmth, approval, affection, and social outlets" (Edwards & Elkins, 1988, p. 7). Thus, a person's sexuality cannot be separated from his or her social development, beliefs, attitudes, values, self-concept, and self-esteem. Being accepted and liked, displaying affection and receiving affection, feeling that we are worthwhile individuals, doing what we can to look or feel attractive, having a friend to share our thoughts and experiences these are among the deepest human needs. Our sexuality is intimately connected with these needs. Thus, our sexuality extends far beyond the physical sensations or drives that our bodies experience. It is also what we feel about ourselves, whether we like ourselves, our understanding of ourselves as men and women, and what we feel we have to share with others.

How Does Sexuality Develop?

An understanding of sexuality begins with looking at how the social and sexual self develops. These two facets of the total self must be examined in conjunction with one another, for sexuality is not something that develops in isolation from other aspects of identity (Edwards & Elkins, 1988). Indeed, much of what is appropriate sexual behavior is appropriate social behavior and involves learning to behave in socially acceptable ways.

From the time we are born, we are sexual beings, deriving enormous satisfaction from our own bodies and from our interactions with others, particularly the warm embraces of our mother and father. Most infants delight in being stroked, rocked, held, and touched. Research shows that the amount of intimate and loving care we receive as infants "is essential to the development of healthy human sexuality" (Gardner, 1986, p. 45). The tenderness and love babies receive during this period contribute to their ability to trust and to eventually receive and display tenderness and affection.

The lessons learned during the toddler stage are also important to healthy social-sexual development. Toddlers receive pleasure from others and from their own bodies as well. The uninhibited pleasure that toddlers derive from exploring their own bodies is sometimes regarded with humor and at other times with embarrassment. If these self-exploratory activities are accepted by the adults around them, children have a better basis from which to enjoy their bodies and accept themselves. This does not mean that adults around a toddler should refrain from distracting the child from some behaviors in inappropriate situations, or not impress upon him or her that there are appropriate and inappropriate environments for self-exploration. However, experts do advise against excessive adult reactions that indicate such behaviors are "bad," because such reactions communicate that the body is "bad" or "shameful" (Calderone & Johnson, 1990).

We form many of our ideas about life, affection, and relationships from our early observations. These ideas may last a lifetime, influencing how we view ourselves and interact with others. Because children are great imitators of the behaviors they observe, the environment of the home forms the foundation for their reactions and expectations in social situations. Some homes are warm, and affection is freely expressed through hugs and kisses. In other homes, people are more formal, and family members may seldom touch. The amount of humor, conversation, and interaction between various family members also differs from home to home. Some families share their deep feelings, while others do not. Children observe and absorb these early lessons about human interaction, and much of their later behaviors and expectations may reflect what they have seen those closest to them say or do.

In the preschool and early school years, most children become less absorbed with self-exploration but maintain their curiosity about how things happen. They may disconcert parents by suddenly and directly asking simple (and not so simple!) questions about sexual matters. They are also fascinated to discover that the bodies of opposite-gender playmates are different from their own, and may investigate this fact through staring, touching, or asking questions. This type of behavior is normal and needs to be treated as such. It may help parents to realize that children s curiosity about and exploration of the body are natural evolutions in their learning about the world and themselves. Strong, emotionally-laden reactions on the part of parents can be damaging to children, in that they can learn to feel guilt or shame about their body parts (Tharinger, 1987). Answering questions calmly and truthfully, and displaying a certain degree of leniency regarding children's curiosity will help them develop a positive attitude about their bodies.

Children are learning other things about themselves at this time as well. They begin to play with their peers now, where previously they played next to them but separately. They also begin to test themselves in the social environment: They hit, take toys, and commit other anti-social acts. They make many mistakes, are corrected, and learn necessary lessons about acceptable behavior. These interactions and the lessons learned are important to their concept of self within society.

During this time period, children are also consolidating ideas about gender and gender roles, or what it means to be a male or a female. Between the ages of two and three, most children develop a sure knowledge that they are male or female. By age five, most are well on their way to understanding the kinds of behaviors and attitudes that go with being female or male in this society (Calderone & Johnson, 1990). They form concepts about gender identity by observing the activities of their parents and other adults, and through what others expect or ask them to do. Gender messages are sent to children in many forms. Early messages teach children what gender they are. Then as children grow, messages begin to relate to what type of behavior is appropriate for each gender. The type of toys children are given for play, the clothes they may wear, the type of activities they are permitted to pursue, and what they see their parents doing send nonverbal messages about gender. Voiced expectations contribute as well; some examples are "Be a brave little boy! Brave boys don't cry" and "When you go to the bathroom, you stand up like Daddy/sit down like Mommy." Through such statements and expectations, and through observing the actions of adults, children learn about gender roles and behaviors, and they pattern their behaviors accordingly (Calderone & Johnson, 1990).

In the early school years, the curiosity and explorations of early childhood give way for many children to a period in which interest in the other gender may lessen in favor of new interests and relationships. It is not unusual for some children to reject members of the opposite gender during this period, especially when in the presence of members of the same gender. Some even scorn association with the opposite gender. But this is by no means universally true. Tharinger (1987) cites a number of studies that support the claim that, far from being sexually latent, many children during this age "discuss sex-related topics frequently and others show keen interest in the opposite sex, desiring to be in the presence of the opposite sex, and under certain circumstances may engage in activities with members of the opposite sex" (pp. 535-6). Both of these reactions -- rejecting the opposite gender or showing an interest in the opposite gender -- are normal, for during the early school years children are learning about themselves as boys or girls. Friendships, playmates, games, and activities are important during this period to the continuing development of the sense of self within a social sphere.

With puberty, which starts between the ages of 9 and 13, children begin to undergo great physical change brought about by changes in hormonal balance (Dacey, 1986). Both sexes exhibit rapid skeletal growth. Physical changes are usually accompanied by a heightened sexual drive and some emotional upheaval due to self-consciousness and uncertainty as to what all the changes mean. Before the changes actually begin, it is important that parents talk calmly with their children about what lies ahead. This is a most important time for youth; many are filled with extreme sensitivity, self-consciousness, and feelings of inadequacy regarding their physical and social self. Indeed, their bodies are changing, sometimes daily, displaying concrete evidence of their femaleness or maleness. During puberty, all children need help in maintaining a good self-image.

Adolescence follows puberty and often brings with it conflicts between children and parents or caregivers. This is because, as humans advance into adolescence, physical changes are often matched by new cognitive abilities and a desire to achieve greater independence from the family unit. The desire for independence generally manifests itself in a number of ways. One is that adolescents may want to dress according to their own tastes, sporting unconventional clothes and hairstyles that may annoy or alarm their parents. Another is that adolescents often begin to place great importance on having their own friends and ideas, sometimes purposefully different from what parents desire. The influence of peers in particular seems to threaten parental influence.

Both parents and adolescents may experience the strain of this period in physical and emotional development. Parents, on the one hand, may feel an intense need to protect their adolescent from engaging in behavior for which he or she is not cognitively or emotionally ready (Tharinger, 1987). They may fear that their child will be hurt or that deeply held cultural or religious values will be sacrificed. On the other side of the equation, youth may be primarily concerned with developing an identity separate from their parents and with experiencing their rapidly developing physical, emotional, and cognitive selves (Dacey, 1986).

All of the above statements regarding development apply to most children, regardless of whether they have a disability or not. It is important to understand that all children follow this developmental pattern, some at a slower and perhaps less intense rate, but all eventually grow up.

What is Sexuality Education?

What does it mean to provide sexuality education to children and youth? What type of information is provided and why? What goals do parents, caregivers, and professionals have when they teach children and youth about human sexuality?

Sexuality education should encompass many things. It should not just mean providing information about the basic facts of life, reproduction, and sexual intercourse. "Comprehensive sexuality education addresses the biological, sociocultural, psychological, and spiritual dimensions of sexuality" (Haffner, 1990, p. 28). According to the Sex Information and Education Council of the U.S., comprehensive sexuality education should address:

-- facts, data, and information;
-- feelings, values, and attitudes; and
-- the skills to communicate effectively and to make responsible decisions. (Haffner, 1990, p. 28)

This approach to providing sexuality education clearly addresses the many facets of human sexuality. The goals of comprehensive sexuality education, then, are to:

Provide information. All people have the right to accurate information about human growth and development, human reproduction, anatomy, physiology, masturbation, family life, pregnancy, childbirth, parenthood, sexual response, sexual orientation, contraception, abortion, sexual abuse, HIV/AIDS, and other sexually transmitted diseases.

Develop values. Sexuality education gives young people the opportunity to question, explore, and assess attitudes, values, and insights about human sexuality. The goals of this exploration are to help young people understand family, religious, and cultural values, develop their own values, increase their self-esteem, develop insights about relationships with members of both genders, and understand their responsibilities to others.

Develop interpersonal skills. Sexuality education can help young people develop skills in communication, decision-making, assertiveness, peer refusal skills, and the ability to create satisfying relationships.

Develop responsibility. Providing sexuality education helps young people to develop their concept of responsibility and to exercise that responsibility in sexual relationships. This is achieved by providing information about and helping young people to consider abstinence, resist pressure to become prematurely involved in sexual intercourse, properly use contraception and take other health measures to prevent sexually-related medical problems (such as teenage pregnancy and sexually transmitted diseases), and to resist sexual exploitation or abuse. (Haffner, 1990, p. 4)

When one considers the list above, it becomes clear that a great deal of information about sexuality, relationships, and the self needs to be communicated to children and youth. In addition to providing this information, parents and professionals need to allow children and youth opportunities for discussion and observation, as well as to practice important skills such as decision-making, assertiveness, and socializing. Thus, sexuality education is not achieved in a series of lectures that take place when children are approaching or experiencing puberty. Sexuality education is a life-long process and should begin as early in a child's life as possible.

Providing comprehensive sexuality education to children and youth with disabilities is particularly important and challenging due to their unique needs. These individuals often have fewer opportunities to acquire information from their peers, have fewer chances to observe, develop, and practice appropriate social and sexual behavior, may have a reading level that limits their access to information, may require special materials that explain sexuality in ways they can understand, and may need more time and repetition in order to understand the concepts presented to them. Yet with opportunities to learn about and discuss the many dimensions of human sexuality, young people with disabilities can gain an understanding of the role that sexuality plays in all our lives, the social aspects to human sexuality, and values and attitudes about sexuality and social and sexual behavior. They also can learn valuable interpersonal skills and develop an awareness of their own responsibility for their bodies and their actions. Ultimately, all that they learn prepares them to assume the responsibilities of adulthood, living, working, and socializing in personally meaningful ways within the community.

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The books, journal articles, and videos listed throughout this NEWS DIGEST represent only some of the materials available. If you are interested in obtaining a resource listed in this document, first check with your local library. If the library does not have the resource you are seeking, then you may want to contact the publisher.

We have listed the names, addresses, and telephone numbers of the publishers at the end of this document. Prices for materials will range from no or low cost up to several hundred dollars for some of the video programs listed. Many of these video programs can be rented at lower cost through Planned Parenthood. To help you identify the resources most affordable to you, we have marked most of the resources with an A, B, C, D, E, or F. These letters correspond to the following price ranges (not including any charges for postage and handling):

A: No cost to $10.00
B: $10.01 to $25.00
C: $25.01 to $50.00
D: $50.01 to $100.00
E: $100.01 to $200.00
F: Over $200.00
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References

Calderone, M.S., & Johnson, E.W. (1990). The family book about sexuality (rev. ed.). New York: Harper Collins. (A)

Dacey, J.S. (1986). Adolescents today (3rd ed.). Glenview, IL: Scott, Foresman & Company. (This book has gone out of print but may be available through your public library.)

Edwards, J.P., & Elkins, T.E. (1988). Just between us: A social sexual training guide for parents and professionals who have concerns for persons with retardation. Portland: Ednick. (B)

Gardner, N.E.S. (1986). Sexuality. In J.A. Summers (Ed.), The right to grow up: An introduction to adults with developmental disabilities (pp. 45-66). Baltimore, MD: Paul H. Brookes. (This book has gone out of print but may be available through your public library.)

Haffner, D.W. (1990, March). Sex education 2000: A call to action. New York: Sex Information and Education Council of the U.S. (B)

Hingsburger, D. (1990). I contact: Sexuality and people with developmental disabilities. Mountville, PA: Vida. (B)

Sugar, M. (Ed.). (1990). Atypical adolescence and sexuality. New York: W.W. Norton. (C)

Tharinger, D.J. (1987). Sexual interest. In A. Thomas & J. Grimes (Eds.), Children s needs: Psychological perspectives. Washington, DC: National Association of School Psychologists. (C)

Way, P. (1982). The need to know: Sexuality and the disabled child. Eureka, CA: Planned Parenthood of Humboldt County. (A)

Weiner, F. (Ed.) (1986). No apologies. New York: St. Martin's Press. (B)

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