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 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. References on Sexual Orientation
Calderone, M.S., & Johnson, E.W. (1990). The family book about sexuality (rev.ed.) New York: Harper Collins. (A)
National Guidelines Task Force. (1991). Guidelines for comprehensive sexuality education: Kindergarten - 12th grade. New York: Sex Information and Education Council of the U.S. (A) Resources on Sexual Orientation
Alyson, S. (1991). Young, gay and proud. Boston: Alyson Publications. (A)
Anderson, D. (1990). Homosexuality in adolescence. In M. Sugar (Ed.), Atypical adolescence and sexuality (pp. 181-200). New York: W.W. Norton. (C)
Bozett, F.W., & Sussman, M.B. (Eds.). (1990). Homosexuality and family relations. New York: Harrington Park. (B)
Fairchild, B., & Hayward, N. (1989). Now that you know: What every parent should know about homosexuality (rev.ed.). San Diego: Harcourt Brace Jovanovich. (A)
Herdt, G. (Ed.). (1989). Gay and lesbian youth. New York: Haworth Press. (B)
Hetrick, E.S., & Martin, A.D. (1987). Development issues and their resolution for gay and lesbian adolescents. In E. Coleman (Ed.), Integrated identity for gay men and lesbians. New York: Harrington Park. (B)
Hidalgo, H., Peterson, T.L., & Woodman, N.J. (1985). Lesbian and gay issues: A resource manual for social workers. Silver Spring, MD: National Association of Social Workers. (B)
Savin-Williams, R.C. (1990). Gay and lesbian youth: Expressions of identity. New York: Hemisphere. (C)
Serving lesbian and gay youth. (1991, Spring/Summer). Focal Point, 5(2), 1-12. (A)
Sex Information and Education Council of the U.S. (1991). Gay male and lesbian sexuality and issues: A SIECUS annotated bibliography of books for professionals and consumers. New York: Author. (A)
Whitlock, K. (1989). Bridges of respect: Creating support for lesbian and gay youth (2nd ed.). Philadelphia: American Friends Service Committee. (A)
_________________________________ 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. Resources on Reproduction, Birth Control,
and Genetic Counseling
Finger, A. (1990). Past due: A story of disability, pregnancy, and birth. Seattle, WA: Seal Press. (B)
Hakim-Elahi, E. (1982). Contraceptive of choice for disabled persons. New York
State Journal of Medicine, 82(11), 1601-1608. (A)
Ince, S. (1987). Genetic counseling. White Plaines, NY: March of Dimes. (A)
Kroll, K., & Klein, E. (1992). Enabling romance: A guide to love, sex, and relationships for disabled people (and the people who care for them). New York: Crown. (B)
March of Dimes Birth Defects Foundation. (n.d.). Our genetic heritage. White Plaines, NY: Author. (C; This is a videotape explaining genes and heredity.)
National Center for Education in Maternal and Child Health. (1991, January). Understanding DNA testing: A basic guide for families. Washington, DC: Author. (A)
Richards, D. (1986). Sterilization: Can parents decide? Exceptional Parent, 16(2), 40-41. (A)
Rodman, H., Lewis, S.H., & Griffiths, S.B. (1984). The sexual rights of adolescents: Competence, vulnerability, and parental control. New York: Columbia University Press. (B)
U.S. Department of Health and Human Services. (1980). Learning together: A guide for families with genetic disorders (DHHS Publication No. (HSA) 80-5131). Rockville, MD: Author.
Weiner, F. (Ed.) (1986). No apologies. New York: St. Martin's Press. (B)
_______________________________________________________ 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.
It is important to communicate accurate, up-to-date information (rather than use scare tactics) on the following topics:
-- 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.
Many parents and professionals may need to inform themselves fully about these diseases before talking with young people with disabilities. The resources listed below are a starting point of gathering needed information about HIV/AIDS. Publishers listed at the end of this NEWS DIGEST (those marked with an asterisk) can provide low-cost pamphlets on the subject of HIV/AIDS, as well as the other STDs. References on Sexually Transmitted Diseases
National Guidelines Task Force. (1991). Guidelines for comprehensive sexuality education: Kindergarten - 12th grade. New York: Sex Information and Education Council of the U.S. (A)
Monat-Haller, R.K. (1992). Understanding and expressing sexuality: Responsible choices for individuals with developmental disabilities. Baltimore, MD: Paul H. Brookes. Resources on Sexually Transmitted Diseases
Center for Population Options. (1989, September). Adolescents, AIDS, and HIV: Resources for educators. Washington, DC: Author. (A)
Crocker, A.C., Cohen, H.J., & Kastner, T.A. (1992). HIV infection and developmental disabilities: A resource for service providers. Baltimore, MD: Paul H. Brookes. (C)
Lindemann, J. (1990). SAFE: An HIV/AIDS curriculum for individuals with MR/DD. Portland, OR: Oregon Health Sciences University. (D)
National Sexually Transmitted Diseases Hotline: 1-800-227-8922.
National AIDS Hotline: 1-800-342-AIDS; 1-800-243-7889 (TDD).
Quackenbush, M., Nelson, M., & Clark, K. (1988). The AIDS challenge: Prevention education for young people. Santa Cruz, CA: Network/ETR Associates. (B)
Sex Information and Education Council of the U.S. (1989). How to talk to your children about AIDS (rev. ed.). New York: Author. (A, also available in Spanish)
Sex Information and Education Council of the U.S. (1990). Communication strategies for HIV/AIDS and sexuality: A workshop for mental health and health professionals. A SIECUS training manual. New York: Author. (A)
Sex Information and Education Council of the U.S. (1990). Performance standards and checklist: For the evaluation and development of school HIV/AIDS education curricula for adolescents. New York: Author. (A)
Sex Information and Education Council of the U.S. (1991). Children, adolescents
and HIV/AIDS education: A SIECUS annotated bibliography. New York: Author. (A)
Young Adult Institute (producer). (1987). AIDS: Training people with disabilities to better protect themselves. New York: Young Adult Institute. (C, to rent; E, to buy)
What everyone should know about STDs. South Deerfield, MA: Channing L. Bete. (A)
________________ 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. References on Sexual Exploitation
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.)
Krivacska, J.J. (1991, August/September). Child sexual abuse prevention programs: The need for childhood sexuality education. SIECUS Report, 19(6), 1-7. (A)
Rosen, M. (1984). Sexual exploitation: A community problem. Walnut Creek, CA: Planned Parenthood Association of Shasta/Diablo. (This book has gone out of print but may be available through your public library.) Resources on Sexual Exploitation
Baird, K., & Kile, M.J. (1986). Body rights: A DUSO approach to preventing sexual abuse of children. Circle Pines, MN: American Guidance Service. (B)
Champagne, M., & Walker-Hirch, L. (1989). Circles II: Stop abuse. Santa Barbara, CA: James Stanfield. (F)
Child sexual abuse: A solution. (1986). Santa Barbara, CA: James Stanfield. (This 6-part program is available in filmstrip or video format and contains parts for children aged preschool to grade 6, for teachers and administrators, and for parents.) (F)
Girard, L.W. (1984). My body is private. Niles, IL: Albert Whitman & Company. (B)
Jessie. (1991). Please tell! A child s story about sexual abuse. Center City, MN: Hazelden. (A)
Kent Public Schools
. (1985). Self-protection for the handicapped: A curriculum designed to teach handicapped persons to avoid exploitation. Seattle: Author. (ERIC Document Reproduction Service No. ED 263 705).
Nelson, M., & Clark, K. (1986). The educator s guide to preventing child sexual abuse. Santa Cruz, CA: Network. (B)
Planned Parenthood of Cincinnati. (producer). Sexual abuse prevention: Five safety rules for persons who are mentally handicapped. Cincinnati: Author. (This is a 30-minute video.) (E)
Seattle Rape Relief Developmental Disabilities Project. (1991). The Project Action curriculum: Sexual assault awareness for people with disabilities. Seattle: Author. (E)
Sobsey, R. (1991). Disability, sexuality, and abuse: Annotated bibliography. Baltimore, MD: Paul H. Brookes. (B)