Social and Sexual Issues During Transition

Here you will find expert advice on dealing with these two very sensitive issues.

 

Introduction

Today, because of the work of advocates and people with disabilities over the past half-century, American society is acknowledging that those 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 social life and 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 an individual for the transition to adulthood, with its many choices and responsibilities, is certainly one of the greatest challenges that parents and others face.

The focus of this section will be to address various concerns related to individuals with disabilities and their social and sexual issues. After reading this section you should understand the following:

• The importance of developing social skills
• Acquiring social skills
• How families can help widen social experiences
• Avoiding social mistakes
• Fostering relationships: Suggestions for young adults
• Misconceptions about sexuality and disability
• Defining sexuality
• How sexuality develops
• Sexuality education
• Suggestions for teaching children and youth about sexuality
• Early Signs of Puberty
• Issues to address with the adolescent
• How particular disabilities affect sexuality and sexuality education

The Importance of Developing Social Skills

In the course of human development, there is probably no greater need than to attach, connect or build gratifying human relationships. This human need is felt by all, whether with a disability or not. It is vital that all children be given the opportunities to learn and practice the social skills considered appropriate by society. All children must learn how to conduct themselves in ways that allow them to develop relationships with other people. Parents must keep in mind that social skills pervade an individual’s entire life, at home, in school, in the community, and at the workplace. An example of the significance of a deficit in social skills appears to be that a large percentage (nearly 90 percent) of employees lost their jobs because of poor attitude and inappropriate behavior, rather than the lack of job skills.

Children with disabilities may find developing these skills more difficult than their peers without disabilities. As a result of a variety of learning or other cognitive disabilities, visual or hearing impairments, or a physical disability that limits their chances to socialize, children with disabilities may lack the exposure and experiences required to develop appropriate social skills. Most, however, are capable of learning these important “rules” (Duncan & Canty-Lemke, 1986) and should be given opportunities to learn and practice them by professionals, parents and professionals.

Acquiring Social Skills

The development of social skills is a process that begins very early. We usually learn these skills from modeling significant individuals in our lives. The road to social skill development is filled with successes and mistakes. When the mistakes occur, parents usually provide us with a clear frame of reference so that we learn from our mistakes. The change in our behavior to more appropriate responses usually results from reward or punishment; both tending to shape our behavior. Rewards tell us what to do and punishments should tell us what not to do.

A very important source of social skill modeling comes from friends. A child who is able to maintain a social awareness of other people’s reactions will modify his or her behavior in accordance with the positive or negative responses from others. In the case of individuals with disabilities, however, this important feedback on performance may be denied (Duncan & Canty-Lemke, 1986); some cannot learn the basics of social behavior. For others, social isolation plays a key role; how can a person get feedback on his or her social skills when little socializing takes place?

Socialization takes time. We are always fine-tuning socialization skills throughout our lives, as we are exposed to many new social situations at different developmental periods. The development of social skills relies on the ability of children and adults to:

• observe the behavior of others as well as their own
• discuss possible behavioral options
• practice different skills in a variety of situations to see which ones result in positive feedback
• listen to constructive feedback from individuals whom they trust and respect

Individuals with disabilities may have difficulty with many of the skills mentioned above, and as a result they may:

• find it hard to take turns during conversations
• not be able to maintain eye contact
• experience difficulty being polite
• have problems maintaining attention
• not know how to repair misunderstandings
• not be able to find topics that are of mutual interest
• have problems distinguishing social cues (both verbal and nonverbal), for example, facial expressions or tone of voice
• find it hard to express what they mean if language problems exist
• have difficulty judging how close to stand to another person

To compound the problem, many individuals with disabilities are completely oblivious to their social clumsiness, and do not understand why their social lives are not fulfilling.

Clearly, appropriate behaviors can be taught to those with disabilities. Teaching can begin at home, with the parent playing a vital role in helping a child to socialize. Children should be included in family social activities where they have a part to play in the gatherings. They might:

• greet people at the door
• take their coats
• show them where the chairs are
• offer them food

Remember, these early interactions lay the foundation for interactions in the future, many of which will take place outside the home, and in many cases, skills will have to be practiced one at a time.

To a certain degree, children may be protected and rescued from uncomfortable social situations by their parents and professionals throughout school. As most children grow older, however, they interact more and more with people in situations where direct supervision by concerned adults is not possible. Children can learn how to incorporate the early teachings so that they can make friends within their peer groups, learn more about socializing, and refine their social skills as they grow and mature. Friendships are important for all children to develop, because contact, understanding, and sharing with others are basic human needs. As children develop, the natural movement is away from parents and more toward a peer group attachment. Friends “serve central functions for children that parents do not, and they play a crucial role in shaping children’s social skills and their sense of identity” (Rubin 1980, p. 12).

Unfortunately, many children with disabilities are socially isolated as a result of several factors:

• The presence of a disability may make peers shy away.
• Transportation to and from social events may be difficult.
• Special health care may be required, for example, a respirator.
• The individual with the disability may be reluctant to venture out socially.

Because a lack of appropriate social skills may contribute to a person’s social isolation, the child is caught in a vicious cycle. The current educational trend toward inclusion is an attempt to remedy this social isolation and provide all students with positive social role models.

How Parents and Professionals Can Help Widen Social Experiences

Teaching social skills is one of the most difficult and frustrating experiences confronted by parents and professionals, particularly when the disability is characterized by concrete thinking. What makes it so difficult is that our social behavior varies in different contexts, and children with disabilities may not be able to adjust as quickly as the situation requires.

Parents and professionals can provide a variety of experiences that widen their social circle in a number of ways. These include (Pierangelo and Crane, 1997):

• Emphasize good grooming and personal hygiene, and teach children the basics of self-care.
• Discuss and explore the characteristics of good friendships:
• What makes for good friendships, how friendships are formed and maintained, and some reasons why friendships may end.
• Model important social behaviors and then have the individual role-play any number of typical friendly interactions. Such interactions might include phone conversations, how to ask about another person’s interests or describe one’s own interests, how to invite a friend to the house, or how to suggest or share an activity with a friend.
• Help the child develop hobbies or pursue special interests.
• Encourage the child to pursue recreational and leisure activities in the community.
• Encourage the child to participate in extracurricular activities at school. Help the teenager find employment or volunteer positions in the community.
• Try not to overprotect. Although it is natural to want to shield a child from the possibility of failure, hurt feelings, and others’ rejection, parents, particularly, must allow their children the opportunity to grow and stretch socially.

Avoiding Social Mistakes

Many individuals with disabilities need special help to avoid two types of social mistakes. The first includes those that occur when the person with a disability treats an acquaintance or a total stranger as if he or she were a dear and trusted friend. Individuals with mental retardation are particularly vulnerable to making these kinds of mistakes, i.e., hugging or kissing a stranger who comes to the family home.

The second error generally involves doing or saying something in public that society considers unacceptable in that context, such as touching one’s genitals or undressing in plain view of others. Committing either type of error can put the person with a disability into a vulnerable position in terms of breaking the law or opening the door to sexual exploitation. As a special educator, you can help parents understand these situations and how to handle them. Present parents with the following information concerning how to handle their child when they exhibit socially inappropriate behaviors:

• Teach the distinction between public and private through modeling, explanation, and persistence.
• When a child commits public-private errors, such as touching his or her genitals, immediately and calmly say, “No, that’s private. We don’t touch ourselves in public.” Then, if possible, allow the child to go to a private place.
• Provide a place of privacy for the child to go to. Not only does this allow the child to understand the difference between public and private but it acknowledges his or her right as an individual to have and enjoy time alone.

Misconceptions about Sexuality and Disability

The natural course of human development means that, at some point in time, children will assume responsibility for their own lives, including their bodies. A parent faces this inescapable fact with powerful and often conflicting emotions: pride, alarm, nostalgia, disquiet, outright trepidation, and the bittersweet realization that the child soon will not be a child anymore. The role that parents and professionals play in a child’s social-sexual development is a unique and crucial one. Through daily words and actions, and through what they do not 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.

While a parent is expected to be a child’s primary educator of values, morals, and sexuality, this may often not be the case. 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 a parent uncomfortable, regardless of whether the child has a disability, and regardless of culture or educational background, religious affiliation, beliefs, or life experiences. For many people, the word sexuality conjures up many images, both good (joy, family, warmth, pleasure, love) and fearful (sexually transmitted diseases, exploitation, unwanted pregnancies). Anxieties and misgivings are often heightened for parents of children with disabilities.

A physically disabled individual engaging in sexual activity has been an image not entertained much by mainstream society. However, if an individual is born with or acquires a physical disability during his or her life span, the issue of sexuality becomes one of the most important factors of existence (Mona, 2003).

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, and more independence and self-sufficiency, people with disabilities are choosing to marry or to 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, including, 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.

Defining 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).

How Sexuality Develops

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 mothers and fathers. 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.

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, children continue to be curious about their bodies and the bodies of the opposite sex. They make many explorations, using all their senses. 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 normally starts between the ages of 9 and 13, children begin to undergo great physical change brought about by changes in hormonal balance (Dacey, 1986). 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 selves. Their bodies are changing, sometimes daily, displaying concrete evidence of their femaleness or maleness.

During puberty (The onset of sexual maturation), 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; 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 and others in authority. 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. A parent, on the one hand, may feel an intense need to protect the adolescent from engaging in behavior for which he or she is not cognitively or emotionally ready (Tharinger, 1987). A parent may fear that the child will be hurt, or that deeply held cultural or religious values will be sacrificed. On the other side of the equation, young people may be primarily concerned with developing an identity separate from the parents and with experiencing their rapidly developing physical, emotional, and cognitive selves (Dacey 1986). All children follow this developmental pattern, whether they have a disability or not, some at a slower and perhaps less intense rate, but they all eventually grow up.

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

1. facts, data, and information
2. feelings, values, and attitudes
3. 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. Stated in broader terms, the goals of comprehensive sexuality education are as follows:

• 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 relationships, 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 this list, it becomes clear that a great deal of information about sexuality, relationships, and the self must be communicated to children and youth. In addition to providing this information, parents and professionals must allow children and youth opportunities for discussion and observation, as well as to practice important skills such as decision making, assertiveness, and socializing. Sexuality education is not achieved in a series of lectures that take place when children are approaching or experiencing puberty; sexuality education is a lifelong 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 because of 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
• may need more time and repetition in order to understand the concepts presented to them

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.

Suggestions for Teaching Children and Youth about Sexuality

This section offers some practical suggestions to teach parents on how to take an active role in teaching their children with disabilities about sexuality. The discussion is organized by age groupings and the specific types of sexuality training that can be provided to individuals as they grow and mature. Although physical development is not much delayed for most individuals with disabilities, a child may not show certain behaviors or growth at the times indicated below. Depending on the nature of the disability, emotional maturity may not develop in some adolescents at the same rate as physical maturity. This does not mean that physical development won’t occur. It will. Parents can help children to cope with physical and emotional development by anticipating it and talking openly about sexuality and the values and choices surrounding sexual expression. This will help prepare children and youth with disabilities to deal with their feelings in a healthy and responsible manner. It’s important to realize that discussing sexuality will not create sexual feelings in young people. Those feelings are already there, because sexuality is a part of each human being throughout the entire life cycle.

Basic sexual education occurs over a long period of time, from infancy through age 11. During this period some of the topics that have to be addressed include:

• the correct names for the body parts and their function
• the similarities and differences between girls and boys
• the fundamentals of reproduction and pregnancy
• the qualities of good relationships (friendship, love, communication, respect)
• decision-making skills, and the fact that all decisions have consequences
• the beginnings of social responsibility, values, and morals
• the acknowledgment that masturbation can be pleasurable but should be done in private
• avoiding and reporting sexual exploitation

Also during the later part of this developmental age range, preteens are usually busy with social development. They are becoming more preoccupied with what their peers think of them and, for many, body image may become an issue. If we think of the emphasis placed on physical beauty within our society–“perfect bodies,” exercise, sports, makeup–it is not difficult to imagine why many preteens with disabilities (and certainly teenagers) have trouble feeling good about their bodies. Those with disabilities affecting the body may be particularly vulnerable to low self-esteem.

There are a number of things parents and professionals can do to help children and youth with disabilities improve self-esteem with regard to body image. The first action parents and professionals can take is to listen to the child and to allow the freedom and space for feelings of sensitivity, inadequacy or unhappiness to be expressed. Be careful not to wave aside a child’s concerns, particularly as they relate to his or her disability. If the disability is one that can cause a child to have legitimate difficulties with body image, then you or the parents need to acknowledge that fact calmly and tactfully. The disability is there; you know it and the child knows it. Pretending otherwise will not help a child develop a balanced and realistic sense of self.

Encourage children with disabilities to focus on and develop their strengths, not what they perceive as bad points about their physical appearance; this is called “refocusing” (Pope, McHale, & Craighead 1988). Many people have also helped a child with a disability improve negative body image by encouraging improvements that can be made through good grooming, diet, and exercise. While it’s important not to teach conformity for its own sake, fashionable clothes can often help any child feel more confident about body image.

One of the most important things that parents can do during their children’s prepubescent years is to prepare them for the changes that their bodies will soon undergo. No female should have to experience her first menses (menarche-The onset of menstruation) without knowing what is going on in her body; similarly, boys should be told that nocturnal emissions (or “wet dreams,” as they are sometimes called) are a normal part of their physical development. To have these experiences without any prior knowledge of them can be very upsetting to a young person, a trauma that can easily be avoided by timely discussions between parent and child. You need to explain to parents that they teach their children (with or without disabilities) that these experiences are a natural part of growing up. Above all, they must do so before they occur.

Early Signs of Puberty

Early signs of puberty include a rapid growth spurt, developing breast buds in girls, and sometimes an increase in “acting out” and other emotional behaviors. Additional topics of importance to address with children approaching puberty are:

• sexuality as part of the total self
• more information on reproduction and pregnancy
• the importance of values in decision making
• communication within the family unit about sexuality
• masturbation (see discussion below)
• abstinence from sexual intercourse
• avoiding and reporting sexual abuse
• sexually transmitted diseases, including HIV/AIDS

During this period of adolescence, it is important for parents to let their child assume greater responsibility in terms of decision making. It is also important that adolescents have privacy and, as they demonstrate trustworthiness, increasingly greater degrees of independence. For many teenagers, this is an active social time, with many school functions and outings with friends. Many teenagers are dating; statistics show that many become sexually involved. According to Morris (2000), over 70% of all boys and 60% of all girls have had sexual intercourse by the age of 17. For youth with disabilities, there may be some restrictions in opportunities for socializing and in their degree of independence. For some, it may be necessary to continue to teach distinctions between public and private. Appropriate sexuality means taking responsibility and knowing that sexual matters have their time and place.

Issues to Address with the Adolescent

Puberty and adolescence are usually marked by feelings of extreme sensitivity about the body. An adolescent’s concerns over body image may become more extreme during this time. Teach parents to let the adolescent voice these concerns, while they reinforce ideas they’ve hopefully introduced about refocusing, good grooming, diet, and exercise. Without dismissing the feelings as a “phase you are going through,” they need to try to help their adolescent understand that some of the feelings are a part of growing up.

Parents may arrange for the youth to talk with the family doctor without the parent being present. If necessary, parents can also talk to the doctor in advance to be sure he or she will be clear about the adolescent’s concerns. If, however, an individual remains deeply troubled or angry about body image after supportive discussion within the family unit, it may be helpful to engage the services of a professional counselor. Counseling can be a good outlet for intense feelings, and often counselors can make recommendations that are useful to young people in their journey toward adulthood.

One topic that many parents find embarrassing to talk about with their children is masturbation. They will probably notice an increase in self-pleasuring behavior at this point in their child’s development (and often before), and may feel in conflict about what to do, because of personal beliefs. Beliefs about the acceptability of this behavior are changing, however, the medical community as well as many religious groups now recognize masturbation as normal and harmless.

Masturbation “can be a way of becoming more comfortable with and enjoying one’s sexuality by getting to know and like one’s body” (Sex Information and Education Council of the U.S. 1991, p. 3). Masturbation only becomes a problem when it is practiced in an inappropriate place or is accompanied by strong feelings of guilt or fear (Edwards & Elkins 1988). How can parents avoid teaching their children guilt over normal behavior, especially if they themselves are not convinced? First, they may wish to talk to a family doctor, school nurse, or clergy, and may be surprised to find that what they were taught as children is no longer being approached in the same way. In dealing with children, parents must recognize that they communicate a great deal through their actions and reactions; they have the power to teach children guilt and fear, or that there are appropriate and inappropriate places for this behavior.

The adolescent with a disability must be taught that touching one’s genitals in public is socially inappropriate and that such behavior is acceptable only when one is alone and in a private place. Starting from very early in the child’s life, when a parent first notices such behavior, it is important to accept the behavior calmly. When young children touch themselves in public, it is usually possible to distract them. During adolescence (and sometimes before), masturbation generally becomes more than an infrequent behavior of childhood, and distracting the youth’s attention will not work. Furthermore, it denies the real needs of the person, instead of helping him or her to meet those needs in acceptable ways (Edwards & Elkins 1988).

Among the many other topics that an adolescent will need to know about are:

• health care, including health-promoting behaviors such as regular check-ups, and breast and testicular self-exam
• sexuality as part of the total self
• communication, dating, love, and intimacy
• the importance of values in guiding one’s behavior
• how alcohol and drug use influence decision making
• sexual intercourse and other ways to express sexuality
• birth control and the responsibilities of child-bearing
• reproduction and pregnancy (more detailed information than has
• previously been presented)
• condoms and disease prevention

Depending on the nature of an individual’s disability, parents may have to present information in very simple, concrete ways, or discuss the topics in conjunction with other issues. Remember, young people are receiving information from other sources as well; it may be essential to include the entire family in the resolve to be frank and forthright, for a lot of information comes from siblings. Children may feel more comfortable asking their brothers and sisters questions than directly asking parents.

Parents and professionals must encourage a child to be involved in activities with others that provide social outlets, such as going to the community recreation center on weekends, going to sports events or a movie, joining a club or group at school or in the community, or having a friend over after school. These interactions help build social skills, develop a social network for a child, and provide him or her with opportunities to channel sexual energies in healthy, socially acceptable directions (Murphy & Corte, 1986).

How Particular Disabilities Affect Sexuality and Sexuality Education

Tailoring the pace and presentation of information to the needs of each young person with disabilities is very important. Parents and professionals must take into consideration:

• how the child’s particular disability may affect his or her social-sexual development
• how the disability affects the child’s ability to learn information about sexual issues
• what extra information may have to be provided to address a child’s special needs

Fostering Social and Sexual Relationships: Suggestions for Young Adults
Some very common questions asked by students with disabilities pertaining to social relationships are:

• Will I ever have an adult relationship, i.e. a boyfriend or girlfriend, a lover, a spouse?
• How will I meet this person?
• What will I talk about?
• What will I say about my disability?
• Will my disability distract the other person from seeing me for the whole and unique person I am?
• What can I do to foster a relationship and help it grow into something strong and meaningful for me?
• Here are some ideas about relationships, selfhood, disability, love, sexuality, friendship, patience, hope, and fulfillment that you, as a special educator, can tell an individual with a disability about the realities of adult relationships:
• Don’t ever believe that no one will love you because you have a disability. People with disabilities can both love and be loved. Relationships are based upon friendship, trust, laughter, and respect–all of which combine to spark and maintain the love you find in a relationship.
• Involve yourself in a variety of such activities as work, community projects, and recreation. These activities will give you the opportunity to meet people. They will also help you grow as a person and avoid boredom and loneliness.
• A relationship is fostered through being a good listener and companion, a person who genuinely cares about others. Build trust and respect between you and the other person. Share activities and ideas. Romance can grow out of such solid ground.
• Keep up on current events. Being able to discuss a variety of topics can help conversations flow.
• Be patient in your search for connection with others. Relationships take time to develop. They cannot be forced. Don’t settle for the first person who expresses an interest in you as a woman or a man, unless you are also interested in that person!
• Be open about your disability. Communicate how your disability will affect, and might interfere with, specific aspects of everyday life. Bring it up yourself, as the other person is often uncomfortable with introducing the topic. The burden of a disability requires that you make other people comfortable with it. How you talk about your disability with openness and humor will set the tone for the relationship.
• Open and frank discussion between you and your partner is the key to solving whatever unique considerations your disability presents. Between loving and trusting partners, however, mutual pleasure and fulfillment are possible.

Conclusion

While the issue of sexuality is often difficult for parents and professionals to discuss with children and youth, it is also one that is highly important to address in an open, frank, and matter-of-fact manner. Yet, sexuality education is not something that is accomplished in a limited number of lessons parents deliver; it is a life-long process of learning about ourselves and growing as social and sexual beings. Because children and youth with disabilities will mature and one day be adults functioning within the community, they have a right to be fully and accurately informed about what sexuality means, what responsibilities it involves, and what unique pleasures, joys, and pain this aspect to identity can bring. The special needs of individuals with disabilities must be taken into consideration when parents and professionals present information on attitudes, values, behaviors, and facts about social skills and sexuality.

References and Suggested Readings

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Abery, B. Eggebeen, A., Rudrud, E., Arndt, K. and Tetu, L.(1994). A guide to enhancing the self
determination of transition-age youth with disabilities. Minneapolis, MN: Institute of Community Integration, University of Minnesota.

Adamec, C. (1996). How to live with a mentally ill person: A handbook of day-to-day strategies. New York, NY: John Wiley & Sons.

Agosta, J.M., and Bradley, V.J. (1985). Family care for persons with developmental disabilities: A growing commitment. Boston, MA: Human Services Research Institute.

Ahern-Preslieu, D. and Lisa Glidden, L. (1994). A curriculum guide for the development of self
determination and advocacy skills. Middletown, CT: A. J. Pappanikou Center.

Albright, L., & Cobb, R.B. (1988a). Curriculum based vocational assessment: A concept whose time has come. The Journal for Vocational Special Needs Education, 10(2), 13-16.

Albright, L., & Cobb, R.B. (1988b). Assessment of students with handicaps in vocational education: A
curriculum-based approach. Alexandria, VA: American Vocational Association.

Allen, J. (1994). Successful job search strategies for the disabled: Understanding the ADA. NewYork, NY: John Wiley.

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