Sexual Identity and Sexual Expression Among Individuals with Developmental Disabilities

Background and Purpose:  Historically, sexuality in individuals with developmental disability (IWDD) has been a neglected focus due to stereotypes and misperceptions of the population.  However experiencing one’s sexuality is normal and natural and important for one’s sense of well-being and life quality and becomes an important aspect of one’s self-concept. Maintaining complex self-concepts (derived from exposures to varied activities, roles and ideas) has implications for emotional defenses and protection against environmental challenges.  Identifying mechanisms that enhance the complexity of self-concept may allow social workers to promote sense of well-being and improved life quality experiences among individuals with developmental disabilities (IWDD). Hence, this research explores sexual identity within IWDD’s self-concepts.

Research questions include:

1)  How do IWDD make meaning of their sexual identity?

2)  What types of intimate experiences (romantic and/or sexual) enhance sense of well-being for IWDD?

3)  How do barriers of sexual expression impact participants’ experiences of their sexuality?

Methods: In-depth interviews with a purposive sample of 20 IWDD (aged 19- 56) explored relationships and thoughts about sexuality as well as activities that contribute to identity complexity.  Participants are diagnosed with: Lesch-Nyhan Disease, cerebral palsy or spina bifida.  Cognitive levels varied: from borderline normal intelligence to mild cognitive impairment. Interviews focused on their experiences of having disability and the perceived impact on their life quality.  Interviews were audio-recorded, transcribed verbatim and coded in ATLAS-ti.  Open-coding, constant comparison and thematic analysis were utilized to generate theory surrounding the processes involved in the development of identity complexity.

Findings:  “Being with my family and friends” was the most frequently articulated quote across interviews.  Participants strive to develop close intimate and nurturing relationships with others.  Maintaining close personal connections, having a ‘special bond,’ staying connected with those who are separated due to distance, financial and transportation barriers have substantial impact on participants’ sense of well-being. While all participants expressed a strong sense of their gender identity and sexual orientation (bisexual or heterosexual), various barriers prevent participants from having a sexual relationship with others.  These range from attitudes of caregivers and parents barring IWDD from education on sexuality and protection, to the need for a facilitator to assist them in getting in positions.  Yet, IWDD in this study viewed sexual intercourse primarily for procreation purposes and were more interested in becoming involved in romantic relationships rather than sexual relationships. 

Conclusion and Implications: Physical and social barriers to sexual expression are vast and overwhelming and participants may receive an implicit message that they should not express their sexuality. While identifying with a specific sexual orientation, the need to physically express/experience that orientation was not evidenced by most participants. Differentiating between intimacy issues and physical sexual expression constitute another recurring theme. Social workers need to ensure that IWDD have opportunities to both: explore physical sexual expression as well as to form romantic relationships. Social workers must individually attend to whether IWDD are interested in sexual expression or not as this may be suppressed due to barriers or to IWDD’s stronger interest in romantic over sexual relationships.