Sexuality and Individuals with Disabilities Annotated Bibliography

(Prepared for NSTTAC by Audrey L. Bartholomew)

Since quality of life emerged as an important issue for individuals with disabilities in the 1980s, several widely accepted definitions have been formulized (Schalock, 2000). In each one of the definitions of quality of life, interpersonal relations an essential component (Schalock, 2000). Although progress has been made for individuals with disabilities with regards to quality of life, their sexuality needs remain largely unaddressed by society and educators (Bambara & Brantlinger, 2002). Bambara and Brantlinger (2002) provided a definition of sexuality as “companionship, friendship, sexual expression, sexual identity, and intimate relationships”. As a result, the purpose of this annotated bibliography is to provide resources for individuals, educators, families, and other related personnel in the area of sexuality and individuals with disabilities.

References

Bambara, L. M., & Bratlinger, E. (2002). Toward a healthy sexual life: An introduction to the special series on issues of sexuality for people with developmental disabilities. Research & Practice for Persons with Severe Disabilities, 27, 5-7.

Brantlinger, E. A. (1992). Sexuality education in the secondary special education curriculum: Teachers’ perceptions and concerns. Teacher Education and Special Education, 15, 32-40.

Shalock, R. L. (2000). Three decades of quality of life. Focus on Autism and Other Developmental Disabilities, 15, 116-127.

Journals or Special Issues

1. Sexuality and Disability: Vols. 1-27. New York, 1978-2009, Springer Netherlands Editor: S. Hough.

This peer-reviewed journal is devoted entirely to the psychological and medical aspects of sexuality in rehabilitation and community settings. Sexuality and Disability provides original scholarly articles addressing the psychological and medical aspects of sexuality in relation to rehabilitation. Publishing up-to-date articles, case studies, clinical practice reports, and research and survey data reports, this international quarterly offers the latest developments in the areas of sexuality as it relates to a wide range of disabilities. Contributions address consumer issues; clinical and research progress; community programs; independent living programs; guidelines for clinical practice; contemporary developments in special programs in sex education and counseling for people with disabilities.

2. Bambara, L. M., Brantlinger, E. (Eds.). (2002). Special Series on Issues of Sexuality for People with Developmental Disabilities [Special issue]. Research & Practice for Persons with Severe Disabilities 27, 5-86. This special issue of Research & Practice for Persons with Severe Disabilities was dedicated to sexuality and individuals with disabilities. Articles included:

1. Bambara,L.M., & Bratlinger, E. (2002). Toward a healthy sexual life: An introduction to the special series on issues of sexuality for people with developmental disabilities. Research & Practice for Persons with Severe Disabilities, 27, 5-7.
   • Provides an overview of current issues in the field of special education with regards to sexuality and people with disabilities.
   • Includes brief descriptions of each article and key themes found across articles.
2. Hingsburger, D., & Tough, S. (2002). Healthy sexuality: Attitudes, systems, and policies. Research & Practice for Persons with Severe Disabilities, 27, 8-17.
   • Discusses importance of developing positive attitudes toward people with disabilities and their sexuality.
   • Describes attributes of healthy human service systems, highlights importance of strong self-advocacy by people with disabilities, and explains harmful effects negative attitudes can have on people with regards to disability and sexuality.
3. Stinson, J., Christian, L., & Dotson, L.A. (2002). Overcoming barriers to the sexual expression of women with developmental disabilities. Research & Practice for Persons with Severe Disabilities, 27, 18-26.
   • Highlights lack of research on topic of sexuality and women with developmental disabilities.
   • Explores various issues women with developmental disabilities experience with regard to sexuality including lack of access to gynecological healthcare and sex education, limited choices regarding reproductive options, and the impact of negative stereotypes.
   • Provides recommendations to address these issues.
4. Ward, M. K., & Bosek, R. L. (2002). Behavioral risk management: Supporting individuals with developmental disabilities who exhibit inappropriate sexual behaviors. Research & Practice for Persons with Severe Disabilities, 27, 27-42.
   • Describes Behavioral Risk Management, a wrap-around, community-based program that addresses the needs of males with disabilities who exhibit inappropriate sexual behaviors.
5. Blanchett, W. J., & Wolfe, P. S. (2002). A review of sexuality education curricula: Meeting the sexuality needs of individuals with moderate and severe disabilities. Research & Practice for Persons with Severe Disabilities, 27, 43-57.
   • Evaluates 12 curricula that were recommended by the Sexuality Information Education Center of the United States for students with disabilities.
   • Criteria includes goals/objectives and scope and sequence, curriculum concepts, instructional methods, curriculum development and evaluation techniques, and suggested adaptations for diverse learners.
6. Plaute, W., Westling, D. L., & Cizek, B. (2002). Sexuality education for adults with cognitive disabilities in Austria: Surveys of the attitudes and the development of a model program. Research & Practice for Persons with Severe Disabilities, 27, 58-68.
   • Describes findings from several surveys and a program that was developed based on findings for adults, parents, and professionals.
7. Lesseliers, J., & Van Hove ,G. (2002). Barriers to the development of intimate relationships and the expression of sexuality among people with developmental disabilities: Their perceptions. Research & Practice for Persons with Severe Disabilities, 27, 69-81.
   • Describes a qualitative study conducted with adults with disabilities, living in Belgium, regarding their perceptions of sexuality.
   • Findings suggest that although there is no one type of relational-sexual experience, a lack of support for building relationships exist. Additional findings suggest that the circumstances of people’s lives, including structural, attitudinal, and organizational barriers appear to shape the perceptions.
   • Provides implications for service professionals.
8. Thompons, S. A. (2002). The practices of in and “out” policy. Research & Practice for Persons with Severe Disabilities, 27, 87-92.
   • Discusses lack of institutional policies with regards to homosexuality for individuals with disabilities.
9. Blanchett, W. J. (2002). Voices from a TASH form on meeting the needs of gay, lesbian, and bisexual adolescents and adults with severe disabilities. Research & Practice for Persons with Severe Disabilities, 27, 82-86.
   • Provides an overview of a session that was conducted at the TASH conference on generating ideas on how to support individuals with disabilities who are homosexual.
   • Suggestions include working with organizations dedicated to helping homosexuals to be more inclusive.

3. Embracing sexuality. (2000, May) 26(5), TASH Newsletter, 26, 1-35. This special issue of the TASH newsletter was dedicated to exploring the sexuality of people with disabilities including the following articles:

1. Wolfe, P.S., & Blanchett, W. J. (2000). Moving beyond denial, suppression and fear to embracing the sexuality of people with disabilities. TASH Newsletter, 26(5), 5-7.
   • Discusses the history of oppression of sexuality for individuals with disabilities.
   • Provides recommendations for how to plan socio-sexuality curricula for people with disabilities including providing instruction by knowledgeable personnel, providing a comprehensive scope of topics, and using best practices.
2. Hingsburger, D., VanNoort, D. S., & Tough, S. (2000). But I thought…Sexuality and teens with developmental disabilities. TASH Newsletter, 26(5), 8-11.
   • Provides recommendations for parents when dealing with sexuality and their children with disabilities.
   • Recommendations include: increasing supervision, recognizing sexuality is normal and healthy, allowing dreams about marriage and children.
3. Meadours, J., & Shoultz, B. (2000). People are people. TASH Newsletter, 26(5), 22-34.
   • Provides a first hand account of two self-advocates (one gay and one not) and their experiences with people who are gay and have a disability.
4. McAfee, J. K., & Wolfe, P. (2000). Individuals with significant disabilities and consent to sexual activity. TASH Newsletter, 26(5), 33-35.
   • Discusses the definition of consent and how it applies to individuals with disabilities and sexuality.
   • Recommends that people with disabilities be involved at the policy-making level of how consent is defined for sexuality and people with disabilities.

Other Journal Articles

Blanchett, W. J. (2000). Sexual risk behaviors of young adults with LD and the need for HIV/AIDS education. Remedial and Special Education, 21, 336-345.

• Examines behaviors and perceptions of young adults with learning disabilities with regards to sexual activity.
• Offers findings that indicate about half the young adults engaged in sexual behaviors that potentially put them at risk for contracting AIDS/HIV. Additionally, the majority of young adults indicated they had received AIDS education in school.

Dukes, E., & McGuire, B. (2009). Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. Journal of Intellectual Disability Research, 53, 727-734.

• Examines the effects of “Living Your Life”, a sexuality curriculum that was adapted for adults with Intellectual Disabilities.
• Indicates the curriculum, when adapted for the specific individuals, was effective in increasing individuals’ capacity to make sexuality-related decisions.

Hingsburger, D. (1994). Masturbation: A consultation for those who support individuals with developmental disabilities. Canadian Journal of Human Sexuality, 3, 278-282.

• Offers suggestions on how to deal with problematic masturbation for individuals with developmental disabilities.
• Includes guidelines on how to teach appropriate time and place.

Lumley, V. A., & Scotti, J. R. (2001). Supporting the sexuality of adults with mental retardation: Current status and future directions. Journal of Positive Behavior Interventions, 3, 109-119.

• Describes a comprehensive approach to supporting sexuality for adults with mental retardation.
• Suggests a person-centered approach combined with individualized assessments and programs.
• Offers suggestions on the role adult service agencies can play in supporting sexuality for adults.

McCabe, M. P. (1999). Sexual knowledge, experience and feelings among people with disability. Sexuality and Disability, 17, 157-170.

• Investigates sexual knowledge of people with physical disabilities, people with a mild intellectual disability, and people without disabilities.
• Indicates individuals with intellectual disabilities had less knowledge and more negative attitudes about sexuality than individuals with physical disabilities.
• Indicates individuals with physical disabilities had less knowledge and more negative attitudes about sexuality when compared to individuals without disabilities.

Romaneck, G.M., & Kuehl, R. (1992). Sex education for students with high incidence disabilities. Teaching Exceptional Children, 25(1), 22-24.

• Promotes sexuality education for students with disabilities be integrated into the general curriculum.
• Discusses teaching strategies, issues in developing a curriculum, and traits of successful sex education teachers.

Wole, P. S., & Blanchett, W. J. (2003). Sex education for students with disabilities: An evaluation guide. Teaching Exceptional Children, 36(1), 46-51.

• Offers an instrument, the Sexuality Education Protocol, to systematically evaluate sex education curricula.

Wolfe, P. S., Condo, B., & Hardaway, E. (2009). Sociosexuality education for persons with autism spectrum disorders using principles of applied behavior analysis. Teaching Exceptional Children 42(1), 50-61.

• Describes ways to apply ABA principles to teaching sociosexual education to students with autism.
• Offers suggestions on which content areas should be included and effective teaching practices.

Wolfe, P. S., & Blanchett W. J. (1997). Infusion of sex education curricula into transition planning: Obstacles and solutions. Journal of Vocational Rehabilitation, 8, 143-153.

• Examines educators’ perceptions of sex education curricula for students with moderate to severe disabilities.
• Offers suggestions on how to infuse sex education into existing curricula and transition plans.

Walcott, D. D. (1997). Education in human sexuality for young people with moderate and severe mental retardation. Teaching Exceptional Children, 29, 72-74.

• Provides an overview of a sexuality education program for individuals with moderate to severe intellectual disabilities.
• Offers suggestions on who should deliver the instruction, what type of instruction to deliver, and how to deliver it.