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Sexuality and People with Disabilities

by Marilyn M. Irwin

In general society, sex has been considered a taboo topic -- unless, of course, you are a radio disc jockey or comedy club comedian. Accurate information about all aspects of sexuality is often felt to be something one should keep under the counter or wrapped in brown paper, and any questions about it, if asked at all, are whispered. Overall, the topic of sexuality makes people uncomfortable, and moral and religious considerations often overshadow the need to provide accessible accurate information. Add disabilities to the equation and further complications present themselves. Sexuality information for people with disabilities and their families is available, but finding it may be a problem for the very people who need it. This article will discuss the importance of having sexuality information available for people with disabilities and raise issues for consideration by libraries.


Importance

People generally find out about sex from their parents, sex education programs in school, and from their friends -- not necessarily in that order. The accuracy and depth of information shared depends heavily on the knowledge, experience, and comfort level of the provider. It should be no different for people with disabilities. However, much of the available print material is generic in nature, rarely mentioning considerations that may be needed for a person who is disabled, and few parents and friends have the experience or knowledge to shed further light on the subject.

Unfortunately, myths about people with disabilities and sex abound. One view is that people with disabilities are either not interested in sex or are not capable. At the other end of the spectrum, people with disabilities are sometimes viewed as being overly interested in sex and out of control in their sexual behavior. Accurate information, free of stereotypical perceptions, must be available to each person who is disabled so he/she can develop a healthy view of who he/she is as a sexual being. This is true for people with acquired, as well as lifelong disabilities. Regaining a sense of sexual identity for a person who becomes disabled as an adult may be a critical component of rehabilitation.

The issue of protection is also a critical component of sexuality information for people with disabilities. Because people who are disabled are often vulnerable to sexual abuse, prevention information should be readily accessible. Allowing myth to take over reason could also mean unnecessary exposure to sexually transmitted diseases, including the fatal consequences of contracting acquired immunodeficiency syndrome (AIDS). For people with cognitive or learning disabilities, for example, the Child Development and Rehabilitation Center in Portland, Oregon, has developed an illustrated flier on condom use with limited text.

Access to accurate sexuality materials is, therefore, very important for people with disabilities, their families, teachers, physicians, and others who may provide information. There is too much at stake to depend on misinformation in this area.


Areas for Consideration

In addition to providing information to assist in the development of individual sexuality and to prevent disease and abuse, there are other basic sexuality areas for consideration. These include health-related issues, appropriate sexual behavior, reproduction and pregnancy, and sexuality rights.

Health-related issues. Throughout life, there are information needs in a number of health-related areas. For most people, gender identification is learned during the early years and is generally followed by an understanding of anticipated changes in the body (e.g., hair growth, breast development in females). While generic sex education materials may be appropriate for most people with disabilities, adaptations may be needed for others. The individual with cognitive impairments may need materials that are presented with photographs and controlled vocabulary. Brekke (1988), Sexuality Education for Persons with Severe Developmental Disabilities, for example, is a comprehensive, seven-part slide set covering parts of the male and female body, appropriate social behavior, menstruation, and male and female medical examination procedures. Because so much learning and questioning in this area is related to what is seen, individuals with visual impairments may need materials that consider visual limitations.

Beyond learning about body parts, people with disabilities may have information needs related to sexual functioning. Some individuals may be impacted by mobility limitations or be easily fatigued. Materials, such as Haseltine, Cole, and Gray (Eds.). (1993). Reproductive Issues for Persons with Physical Disabilities, may be needed to respond to requests that are disability specific. Items that discuss sexuality from the perspective of a specific disability may also discuss other health areas. Haseltine et al., for example, state that some disabilities may mask the timely diagnosis of sexually transmitted diseases, making it particularly important to include this area of instruction (p. 12).

Appropriate sexual behavior. With today's social standards, it is often difficult to know what is appropriate sexual behavior. Because the line between acceptable and unacceptable is very fine, it is equally difficult to determine how and what to teach in this area. Giving hugs as a young child is cute, for example, but it may not be appropriate behavior for an adolescent. Information seekers and providers need to be aware that this is a particular area of sexuality where moral and religious convictions may bias the types of information that are shared.

Laws clarify the appropriateness of some behaviors. Privacy, such as not touching or exposing private parts in public and respecting other people's privacy, is an area with some clear guidelines. Unwanted sexual advances toward other people, including knowledge of who should and shouldn't touch private areas, is another area with legal implications. Having clear instruction and information in these areas, particularly for people with cognitive impairments, may later eliminate legal problems and abuse.

While providing sexuality instruction and information about anatomy changes and appropriate behavior may be seen as difficult but necessary to discuss, dealing with sexual activity is probably the most touchy area to cover. However misinformed, some people consider a person with a disability to be an asexual individual, or they may think that, due to the disability, a person who is disabled should not engage in sexual activities. In any event, talking about the mechanics of sexual activity is not something that people are comfortable doing, yet the "how-to" information may be exactly what is needed. In addition to the importance of having clear information available related to safe sexual practices for people with cognitive impairments, people with physical disabilities may need instruction about sexual positions to adapt for muscular weaknesses or other limitations in mobility. Dalrymple, Gray, and Ruble (1991), for example, also discuss masturbation as "a way to relieve sexual pressure and tension" for people with autism (p. 12), including information about establishing an acceptable routine in an appropriate place. To maximize opportunities for choice by the person with a disability, and his or her partner if appropriate, any information provided in this area should be as free of personal judgment as possible.

When people with disabilities, particularly severe disabilities, engage in activities that are not appropriate, care providers utilize various techniques to change that behavior. Several materials are available that discuss behavior management techniques for handling various types of inappropriate activities. Others, such as Griffiths, Quinsey, and Hingsburger (1989), address the specific issue of inappropriate sexual behavior.

Reproduction and pregnancy. Women with disabilities are, first and foremost, women, and many decide that they want to have children. Many men also decide that they would like to father children. Although there are often more complications when the female has a disability, the decision is generally not made easily by either individual and disability-specific considerations are often present. If the disability is hereditary in nature, for example, genetic counseling may be a factor for the male and female.

For most women contemplating pregnancy, issues for consideration include getting appropriate medical care, the possible impact of pregnancy on the body, concerns for labor and delivery, and care for the child following birth. Although a physical disability, for example, does not alter the ability for most women to be successful in all of the areas listed above, the disability does provide added cause for concern for the expectant mother. Much of that success depends on the information the women receive to assist them through pregnancy and the postpartum period. Rogers and Matsumura (1991), for example, provide an excellent guide for women with disabilities, answering questions throughout each phase.

Sexuality rights. People with disabilities deserve acceptance of their sexuality. That acceptance would not only be within the community of people who do not have disabilities, but also validation within each individual who does. A disability does not alter the right of an individual to express his or her sexuality. This includes the right to marry, parent, and care for children; to make choices about these areas; and to have access to accurate information which will enable them to make good choices and take appropriate actions.


Library Issues

Access to current, accurate sexuality information for people who are disabled and their families is available, but not often generally apparent to people outside the disability field. As increasing numbers of people with disabilities are educated in mainstreamed public school programs and continue to live in inclusive communities, generic sexuality instructors (e.g., health teachers, family practitioners, parents) will have greater needs for access to information to respond to requests. Although libraries may not have the clientele, space, and funds to justify acquisition of materials to meet the range of possible information requests, some items should be housed and networks developed to borrow others, when needed.

One source that may be of particular usefulness is Sobsey, Gray, Wells, Pyper, and Reimer-Heck (1991), Disability, Sexuality, and Abuse: An Annotated Bibliography. This comprehensive volume pulls together works dealing specifically with sexual abuse of people who are disabled.

As stated earlier, sexuality is a difficult topic for most people to discuss, and librarians are no exception. Due to discomfort about this topic, censorship of sexuality materials, whether deliberate or not, often impacts library collections. To provide needed sexuality information for people with disabilities, librarians must learn to face their own comfort level about sexuality and about people who are disabled, then move beyond that to be nonjudgmental in information sharing. In addition to stimulating healthy attitudes about his or her individual sexuality, information that is accurate and accessible could save the life of a person who is disabled.


References

Brekke, B. (1988). Sexuality education for persons with severe developmental disabilities: Seven teaching slide programs. Santa Monica, CA: James Stanfield & Co.

Child Development and Rehabilitation Center. (1990). Using condoms [flier]. Portland, OR: Author.

Dalrymple, N., Gray, S., & Ruble, L. (1991). Sex education: Issues for the person with autism. Bloomington, IN: Institute for the Study of Developmental Disabilities.

Griffiths, D. M., Quinsey, V. L., & Hingsburger, D. (1989). Changing inappropriate sexual behavior: A community-based approach for persons with developmental disabilities. Baltimore: Paul H. Brookes.

Haseltine, F. P., Cole, S. S., & Gray, D. B. (Eds.). (1993). Reproductive issues for persons with physical disabilities. Baltimore: Paul H. Brookes.

Rogers, J., & Matsumura, M. (1991). Mother to be: A guide to pregnancy and birth for women with disabilities. New York: Demos Publications.

Sobsey, D., Gray, S., Wells, D., Pyper, D., & Reimer-Heck, B. (1991). Disability, sexuality, and abuse: An annotated bibliography. Baltimore: Paul H. Brookes.


WHAT'S AVAILABLE AND WHERE YOU CAN FIND IT

The Arc of the United States
The Arc is a national organization on mental retardation with state and local chapters throughout the United States.
1660 L Street, NW, Suite 301
Washington, DC 20036
Phone: 202-534-3700 / 800-433-5255
Fax: 202-534-3731
E-mail: info@thearc.org
Web Site: www.TheArc.org/

Centers for Disease Control
The National Prevention Information Network provides resources and information regarding AIDS and HIV.
National Prevention Information Network
P.O. Box 6003
Rockville, MD 20849-6003
1-800-458-5231
TT: 1-800-243-7012
E-mail: aidsinfo@cdcnac.aspensys.com
Web Site: www.cdc.gov

Genetic Alliance
This organization serves as a referral agency connecting people with genetic disorders and their families with the appropriate support groups.
4301 Connecticut Avenue, NW, Suite 404
Washington DC 20008-2304
202- 966-5557
1-800-336-GENE (1-800-336-4363)
Fax: 202-966-8553
E-mail: info@geneticalliance.org
Web Site: www.geneticalliance.org

National Dissemination Center for Children with Disabilities (NICHCY)
This organization offers several pieces of information regarding youth with disabilities.
1825 Connecticut Ave NW, Suite 700
Washington, DC 20009
1.800.695.0285 (Toll-free, Voice/TTY)
202.884.8200 (Voice/TTY)
202.884.8441 (Fax)
Email: nichcy@aed.org
Website in English: www.nichcy.org
Website in Spanish: www.nichcy.org/espanol/

National Down Syndrome Society
The National Down Syndrome Society provides an information packet and list of books regarding several issues facing people with Down syndrome including sexuality issues.
666 Broadway, 8th Floor
New York, NY 10012-2317
1-800-221-4602
Web Site: http://ndss.org

PACER Center
This Minnesota-based parent-to-parent organization has published numerous items of interest to families of children with disabilities.
8161 Normandale Blvd.
Bloomington, MN 55437
Minnesota: 1.800.537.2237 or 952.838.9000
TTY: 952.838.0190
USA: 888.248.0822
Fax: 952.838.0199
Web Site: www.pacer.org

Planned Parenthood Federation of America
Planned Parenthood Federation of America serves as a clearinghouse and library of over 20,000 items including curricula, pamphlets, books for professionals, and Resource Guides.
1110 Vermont Ave. NW, Suite 300
Washington, DC 20005
202-973-4800
FAX: 202-296-3242
Web Site: http://www.plannedparenthood.org/

SexEd Library
SexEdLibrary is a comprehensive online sex ed resource, with up-to-date, relevant content and the tools with which it is taught. Lesson plans, information and statistics, and professional development courses can be accessed on their site.
SIECUS DC Office
1706 R Street, NW
Washington, DC 20009
Phone: 202/265-2405
Fax: 202/462-2340
Website: http://www.sexedlibrary.org/

Sexuality Information and Education Council of the U.S. (SIECUS)
This organization has materials dealing with sexuality issues and are categorized by age groups and/or specific topic areas such as prevention of sexually transmitted diseases.
SIECUS DC Office
1706 R Street, NW
Washington, DC 20009
Phone: 202/265-2405
Fax: 202/462-2340
Web Site: www.siecus.org


SEXUALITY AND PEOPLE WITH DISABILITIES

The materials listed below are available to check out from the Center for Disability Information & Referral (CeDIR).

Brekke, B. (1988). Sexuality education for persons with severe developmental disabilities: Seven teaching slide programs, rev. ed. Santa Monica, CA: James Stanfield.

Couwenhoven, T. (1992). Beginnings: A parent/child sexuality program for families with children who have developmental disabilities, 2nd ed. Madison, WI: Wisconsin Council and Developmental Disabilities.

Davies, C. & Dubie, M. (2012). Intimate relationships and sexual health: a curriculum for teaching adolescents/adults with high-functioning autism spectrum disorders and other social challenges. Shawnee Mission, KS: AAPC Pub.

Fegan, L., & Rauch, A. (1993). Sexuality and people with intellectual disability, 2nd ed. Baltimore: Paul H. Brookes.

Haseltine, F. P., Cole, S. S., & Gray, D. B. (Eds.). (1993). Reproductive issues for persons with physical disabilities. Baltimore: Paul H. Brookes.

Kroll, K., & Klein, E. L. (1995). Enabling romance: A guide to love, sex, and relationships for the disabled (and the people who care about them). Bethesda, MD: Woodbine.

Monat-Haller, R. K. (1992). Understanding & expressing sexuality: Responsible choices for individuals with developmental disabilities. Baltimore: Paul H. Brookes.

Patterson, P. M. (1991). Doubly silenced: Sexuality, sexual abuse and people with developmental disabilities. Madison, WI: Wisconsin Council on Developmental Disabilities.

Schwier, K. M. (1994). Couples with intellectual disabilities talk about living and loving. Rockville, MD: Woodbine.


Note: Resources updated May 2011. Revised and updated from Library Access: Services for People with Disabilities, Volume 3, Number 4, October 1993.

Copyright & copy: 2012 Center for Disability Information &Referral, Institute for the Study of Developmental Disabilities

Sexuality and People with Disabilities was reproduced through support from Indiana University, Bloomington. The information presented herein does not necessarily reflect the position or policy of Indiana University and no official endorsement should be inferred.