SEX EDUCATION FOR CHILDREN AND YOUTH WITH DISABILITIES - PART 3

FOSTERING RELATIONSHIPS: SUGGESTIONS FOR YOUNG ADULTS

This article is written expressly for young adults with disabilities. When the word "you" is used, it refers to you, the young adult with a disability.

You probably have been talking with your parents and others about the human body and the changes taking place in you physically and emotionally. You've probably also talked about what it means to have an adult relationship. Perhaps you wonder what your future will hold. Will you ever have an adult relationship -- a boyfriend or girlfriend, a lover, a spouse? How will you meet this person? What will you talk about? What will you say about your disability? Will your disability distract the other person from seeing you for the whole and unique person you are? What can you do to foster a relationship and help it grow into something strong and meaningful to you both?

This article presents some ideas you may find helpful when you try to develop meaningful connections with others. Most of these ideas come directly from individuals with disabilities, including paraplegia, quadriplegia, spinal cord injuries, paralysis, polio, multiple sclerosis, and others. There are many common threads running through their stories (which are published in the books listed below). They speak of their experiences, hopes, wishes, failures, and successes as adults and loving human beings.

Here are some of their ideas about relationships, selfhood, disability, love, sexuality, friendship, patience, hope, and fulfillment.

-- Don't ever believe that no one will love you because you have a disability. All the personal stories told in the books below give testimony to the fact that people with disabilities can both love and be loved. In these stories, the disability was not an obstacle to the love either partner felt. What mattered most for these people was that their relationships were based upon friendship, trust, laughter, and respect -- all of which combined to spark and maintain their love. The disability only needed to be taken into consideration when the two people considered how to make love.

--Don't build your life in search of romance. Involve yourself in a variety of activities, such 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.

-- Be a friend first. Don't rush -- or be rushed -- to be sexually intimate. 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! Look for the person who suits you, appreciates you for who and what you are -- disability included -- and who can fulfill you. That person is out there.

-- Be open about your disability. Bring it up yourself, if you need to. Be prepared to answer questions. This is particularly true if you are interested in developing a relationship with a nondisabled person. Don't complain too much about your disability, though. Be positive and matter-of-fact. The best relationships endure because they are based on truth, trust, and sharing.

-- Regardless of your disability, lovemaking is possible. So is pleasure, for both you and your partner. You may need to be creative and flexible about how you make love. Certain techniques may be impossible for you, and you will need to develop your own techniques. 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.

[Click on this link to go to the suggested resources for this section.]

A Quote...

I think that the harder someone tries to directly focus on finding social, romantic, or sexual partners, the more difficult it becomes. I would advice any disabled person to balance out their life and become actively involved in work, community projects, recreation, and other activities that involve platonic relationships. Then, make a conscious effort to become interested in the people you come in contact with. Opportunities for social contact will be a natural outgrowth of these activities. Concentrate on being a friend first. The romantic part will follow by itself. The same thing holds true whether you're disabled or not. (Lois, from Kroll & Klein, 1992, p. 30)

SPECIAL ISSUES

This final article looks at four issues that warrant special consideration from parents and professionals providing education about sexuality to children and youth with disabilities. These issues are:

-- Sexual orientation;

-- Reproduction and birth control;

-- Protection against sexually transmitted diseases; and

-- Protection against sexual exploitation and abuse.

Sexual Orientation

Sexual orientation refers to whether a person is heterosexual, bisexual, or homosexual. This section presents several basic facts about sexual orientation that may be of help to parents and professionals.

First, it is not uncommon for children of the same gender to play "show me" games with one another. This is a normal part of development, for as children grow, their curiosity about their bodies grows as well. Experts caution parents against overreacting to this type of exploration, which often has much more to do with normal curiosity and with the availability and security of same-sexed friends than with homosexuality per se (Calderone & Johnson, 1990).

Researchers do not know what causes a person to have one sexual orientation versus another. Theories about what determines sexual orientation include factors such as genetics, prenatal influences, socio-cultural influence, and/or psychosocial factors (National Guidelines Task Force, 1991, p. 15). Parents may find it useful to realize that, in spite of the controversies that surround homosexuality and bisexuality, sexual orientation is not something that a person can change. When discussing their own social-sexual development, for example, gay men and women seem to report two basic types of personal stories. Many individuals report that they "always knew" what their sexual orientation was, from adolescence on and sometimes before. In contrast, others struggled for years trying to live up to society's expectations of heterosexuality. The realization that their sexual orientation was not heterosexual but, rather, homosexual was a gradual one ending in the awareness that they would not be able to bring their internal feelings into line with what society, their parents, their religion, or their culture wanted them to be.

Because sexual orientation is something that a person has, rather than something a person chooses, parents and professionals should be aware that strong, emotional messages against homosexuality or bixsexuality will not change the orientation a youth has. Such messages can -- and do -- create an impossible situation for the young person who feels one way but who is expected to feel and act another way. Thus, if you suspect that your young person is struggling with his or her own sexual orientation, you may want to:

-- Read some of the books listed in the resource section below and familiarize yourself with the range of thinking and research on homosexuality, bisexuality, and heterosexuality;

-- Consider carefully the messages you send your young person about homosexuality or bisexuality, for hostile, negative signals can do a great deal of harm to a person genuinely seeking to clarify sexual orientation;

-- Share some of the books listed below with your young person;

-- Be open to discussion with your child. Should your child tell you that he or she is homosexual or bisexual, don't withdraw your love and support; and

-- Seek outside assistance (e.g., counseling, or call the National Federation of Parents and Friends of Lesbians and Gays, Inc.) if you are having difficulties accepting your child s sexual orientation.

[Click on this link to go to the suggested resources for this section.]

Reproduction and Birth Control

Any education about the development and expression of sexuality must include information about reproduction, the responsibilities of child-bearing, and how to protect oneself against unwanted pregnancy. (Protection against sexually transmitted diseases is a related issue of great importance and is discussed as the next SPECIAL ISSUE).

While there are disabilities that make it difficult or impossible for an individual to become pregnant or to impregnate another, most individuals with disabilities can have children and, therefore, need to understand the basics of reproduction and how pregnancy occurs. Parents and professionals can refer to the resources listed in previous sections of this NEWS DIGEST for books, pamphlets, and videos that can be useful in guiding discussions with young people with disabilities. (See in particular the resources listed in "Teaching Children and Youth about Sexuality" and "How Particular Disabilities Affect Sexuality and Sexuality Education.") Remember that discussing the basics of reproduction and pregnancy may require adapting materials or the presentation of information to the particular learning characteristics of the young person.

Comprehensive sexuality education does not end with providing information about how babies are conceived. It also involves providing information about the responsibilities of child-bearing and the importance of delaying sexual intercourse until the young person is mature enough emotionally to deal with its many responsibilities and consequences. To the extent that this can be done successfully, information about the various methods of birth control (natural, condom, IUD, pill, diaphragm, etc.) can play an important part in helping the person prevent unwanted pregnancies when sexual intercourse is finally chosen. In some families, birth control may be controversial, given personal, cultural, or religious beliefs. Yet, the decision to have children and when to have children is very much a personal one. Many individuals with disabilities will want to have children. Others may choose not to. Still others may be undecided or have specific concerns such as the possibility that their disability may be passed on genetically to offspring. Information on birth control and family planning is, therefore, essential for young people with disabilities to make responsible decisions about sexual health and behavior.

It is important to realize that some forms of birth control may be suitable for a person with a certain disability, while other forms may not. For example, young women who have difficulty with impulsivity, memory, or with understanding basic concepts may have difficulty understanding and using the rhythm method. Remembering to take a birth control pill every day would also be difficult, making both of these methods ineffective means of controlling against unwanted pregnancy. An alternate method of birth control, such as a time-released implant in the arm (known as NORPLANT), might be indicated. Similarly, for many youth with disabilities, learning to use a particular birth control method properly may involve more than just reading about the method or talking with their parents or doctor. For example, learning how to use a condom may require more than a simple instruction such as "you put it on." Some demonstration and practice may be needed before the person knows how to use the method effectively. It may be useful for parents to talk with the family physician about methods of birth control, and how suitable each method is when the young person's disability is taken into consideration.

Sterilization might be considered as an effective and pragmatic birth control option for some individuals with disabilities, particularly those who do not wish to have children and those who are incapable of understanding the consequences of sexual activity or of assuming the responsibilities of parenthood. All the people involved in making such a decision should be aware that there are strict laws regarding sterilization. These laws vary from state to state, but in most cases, the person in question must give his or her informed consent to such a procedure. (This requirement is intended to protect individuals with disabilities against involuntary sterilization.) For some individuals who are severely disabled, however, it may be impossible to determine whether or not the consent is truly "informed." If sterilization is being considered as an option for the young person with disabilities, all persons involved in making such a decision will need to find out what the laws regarding sterilization are in their state.

Of course, many individuals with disabilities will want to have children at some point in their lives. For those who choose to have a child, conception may be more or less difficult, depending on the nature of the disability. Similarly, carrying and delivering the baby may present considerations unique to the disability. Many women with physical disabilities, for example, have difficulty finding an obstetrician who is willing to assume medical responsibility for a person who requires different treatment and consideration. Yet there are many stories of women who have successfully birthed and parented children in spite of such obstacles. To the young person looking into the future and the possibility of a family, it may be helpful to learn about the responsibilities involved in raising children and to meet, read about, or see on video individuals with disabilities who have successfully done so. These provide positive role models for young people who may feel that, because of their disability, they will never have children of their own.

For many, however, there may be concern that the disability might be inherited. Parents may wish to discuss genetic counseling with their child with a disability and with other children in the family as well. There are many materials available to facilitate discussion about this issue with family members. Genetic counseling is best obtained prior to pursuing parenthood. There are many agencies specializing in providing this sort of information; some are listed under ORGANIZATIONS at the end of this NEWS DIGEST.

Listed below are resources that can help parents and professionals address with their children the issues of birth control, parenting, and genetic counseling. Remember that many of the resources listed at the end of the article entitled "Teaching Children and Youth About Sexuality" also include information about the basics of reproduction and birth control. You can also contact organizations such as Planned Parenthood for concise, easy-to-use pamphlets on reproduction and birth control. This information is vital to young people with disabilities and, as with all information about sexuality, needs to be presented in ways that take into consideration the particular individual and the disability he or she has.

[Click on this link to go to the suggested resources for this section.]

Protection Against Sexually Transmitted Diseases

The topic of sexually transmitted diseases (STDs) is an extremely important one to discuss with young people. Accurate information about STDs is vital to help young people maintain sexual health and practice health-promoting behaviors. STDs include diseases such as gonorrhea, syphilis, HIV infection (which in advanced stages leads to AIDS), chlamydia, genital warts, and herpes. Most of these diseases can be cured with proper medical care. Exceptions to this are genital herpes, HIV infection, and AIDS, "although medications are now available which lessen symptoms and slow the development of the disease" (National Guidelines Task Force, 1991, p. 41).

Protecting oneself against sexually transmitted diseases (STDs) is a separate issue from protection against pregnancy. Youth with disabilities need to be informed that many methods of birth control do not provide protection against disease. They need to know what does offer protection and know how to obtain and use the method. They also need to know that abstinence from sexual intimacy is the surest way to avoid contracting an STD.

-- what sexually transmitted diseases are and what symptoms are associated with each one;

-- how each STD is transmitted, including sexual behaviors that place the person at risk of contracting or transmitting the disease;

-- myths about how a person can contract particular diseases;

-- how each STD is treated medically, and those STDs that cannot be cured;

-- health-promoting behaviors such as regular check-ups, breast and testicular self-exam, and identifying potential problems early.

Providing this information may be more or less difficult, depending on the nature of the person's disability. Individuals with mental retardation, for example, may have trouble understanding that a person can look healthy but still transmit a disease (Monat-Haller, 1992). It may be important to present information about STDs in very concrete terms, including pictures of what the various symptoms (e.g., lesions, blisters, etc.) look like. For individuals who have difficulty remembering information, it will be vital for parents and professionals to re-teach and re-emphasize the major points about disease prevention.

[Click on this link to go to the suggested resources for this section.]

Sexual Exploitation

One of the greatest fears of parents and caregivers is that their child with a disability will be sexually exploited. A number of factors may make individuals with disabilities more susceptible to sexual exploitation or abuse than their peers without disabilities. Rosen (1984) has identified several of these factors, which include:

-- Physical limitations that make self-defense difficult;

-- Cognitive limitations that make it difficult for the person to determine if a situation is safe or dangerous;

-- Vulnerability to suggestion, because of limited knowledge of sexuality and human relations, including public and private behavior;

-- Lack of information about exploitation and what to do if someone attempts to victimize them;

-- Impulsivity, low self-esteem, and poor decision-making skills; and

-- Lack of social opportunities that results in loneliness and vulnerability.

The fact that many individuals with disabilities are vulnerable to sexual exploitation makes it all the more imperative for parents and caregivers to address this issue with their child with a disability. Many child abuse prevention programs teach children to identify sexual abuse based upon the concept of "good touch" and "bad touch." Recently, this approach has raised concern among many professionals, for a number of reasons (see Krivacska, 1991). Perhaps the most critical concern is that, from a developmental perspective, young children are not necessarily capable of interpreting with accuracy the distinctions between a good and bad touch. Although most children lack understanding of appropriate expressions of sexuality, they must nonetheless make distinctions about inappropriate expressions.

Because young children (preschoolers and early elementary school children) are not cognitively, emotionally, or socially able to protect themselves against sexual exploitation or abuse, there are a number of steps that parents and professionals can take to help protect children. These include:

-- Closely supervising the whereabouts and activities of children;

-- Carefully scrutinizing the backgrounds and references of daycare providers and other caregivers;

-- Being informed about sexual abuse, including knowing what physical and behavioral signs a child may show if abuse has occurred; and

-- Distinguishing between teaching the child to be polite (e.g., saying hello to adults) versus compliant (e.g., requiring the child to kiss or be kissed by relatives, friends, or acquaintances when the child does not want to do so).

Closely supervising young children (and older children as well) does not mean that parents or professionals should strictly limit children's activities (i.e., deny opportunities to participate in play groups, social groups, or community activities). Shielding persons with disabilities from the outside world may limit their contact with strangers, but it will not protect them from exploitation by friends, family members, or caregivers. Parents need to be aware that, in most cases, the abuser is someone the child knows.

There is also concern that young children may be receiving their first messages about sexuality in the negative, frightening terms associated with discussing sexual abuse. What impact this has upon the later development of healthy sexuality is unknown. Parents may need to consider the value of first providing information about the "healthy role sexuality plays in the human life cycle" (Krivacska, 1991, p. 3). "If one must teach children about sexual abuse, one must first teach them, in an age-appropriate manner, about sexuality and healthy, appropriate forms of sexual expression" (p. 6).

Once a foundation of understanding has been laid in terms that are positive about sexuality, then information about identifying, avoiding, and reporting sexual abuse can be given to children with disabilities. Beyond that, "the strongest protection against...sexual exploitation is an ongoing training program emphasizing self-reliance" (Gardner, 1986, p. 58). Building self-reliance includes:

-- Telling children that they have the right to say "no" to touches or behaviors that hurt or make them uncomfortable. (Children should also know there are a few exceptions to this rule, such as getting a shot from the doctor.)

-- Teaching children decision-making and self-advocacy skills, which provide a good foundation for saying "no."

-- Letting children know that they should always tell someone when another person attempts to victimize them or when a situation makes them feel uncomfortable.

Listed below are resources that can help parents and professionals approach the issue of sexual exploitation and its prevention. Most of these resources include materials that can be used to teach children and youth with disabilities what sexual exploitation is and how to protect themselves from becoming a victim. Additional resources may be available by contacting some of the organizations listed at the end of this NEWS DIGEST, particularly those publishing pamphlets, books, and videos about sexuality.

[Click on this link to go to the suggested resources for this section.]

Conclusion

[Click on this link to go to the suggested resources for this section: Publishers and so on.]

NICHCY thanks our Project Officer, Dr. Sara Conlon, at the Office of Special Education Programs, U.S. Department of Education, for her time in reading and reviewing the many, many drafts of this document. We would also like to express our deep appreciation to Debra W. Haffner, Executive Director, Sex Information and Education Council of the U.S., for her time-consuming and thoughtful review and for the many SIECUS materials she shared with NICHCY. We also extend our thanks to the other reviewers who provided valuable expertise, guidance, and materials: Betty Pendler, Parent Advocate and Lecturer, New York City; and Dr. Sharon Davis, Director of Research and Program Services, The Arc, Arlington, Texas.

Project Director: Carol H. Valdivieso, Ph.D.
Editor: Lisa Kupper
Authors: Lisa Kupper, Lana Ambler, and Carol Valdivieso

This News Digest is made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs. The contents of this publication do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products or organizations imply endorsement by the U. S. Government.

The Academy for Educational Development, founded in 1961, is an independent, nonprofit service organization committed to addressing human development needs in the United States and throughout the World. In partnership with its clients, the Academy seeks to meet today's social, economic, and environmental challenges through education and human resource development; to apply state-of-the-art education, training, research, technology, management, behavioral analysis, and social marketing techniques to solve problems; and to improve knowledge and skills throughout the world as the most effective means for stimulating growth, reducing poverty, and promoting democratic and humanitarian ideals.

Well, you have just read the third of the three sections on Sex Education for those with Disabilities. It was just too big to fit into one web page. Please click on the following link to go to the first section. I think you will find it worth while to do so, if you didn't start there. [Click on this link to go to the first section of this three part series on Sex Education.]