Sexual SelfAdvocacy Definitions and Strategies from SelfAdvocates Results

Sexual Self-Advocacy: Definitions and Strategies from Self-Advocates Results Seven themes emerged from self-advocates’ input during the NGT. My Choices: Making choices about what you want and how you express your sexuality. Choices are unique to that individual and informed by one’s life experiences and values. Aleksa Bolyanatz, Carli Friedman, Katie Arnold & Linda Sandman Background The present study explored how adults with intellectual/developmental disabilities, who self-identify as self-advocates, understand experience sexual self-advocacy. This study comes out of an awareness of the lack of evidence-based research and general knowledge about the core barriers and facilitators of effective policies, services and practices. In turn, this perpetuates ignorance and stigma about the sexuality of people with disabilities. Despite a strong disability rights tradition in the US, the sexual rights of people with I/DD is rarely debated, discussed or researched. Historically, people with I/DD have not been viewed as having the capacity to engage in sexual relationships (Tilley et al, 2012, Kempton & Kahn, 1991). Recent literature has focused on investigating the sexual experiences and identity perceptions of adults with IDD (Mc. Carthy, 2014, Azzopardi-Lane & Callus, 2014, Fitzgerald & Withers, 2011, Swango. Wilson, 2010, Taylor Gomez, 2012; Bernert, 2011). This literature establishes people with IDD as sexual beings (Winges-Yanez, 2014) using the voices of people with IDD. Although personal agency, autonomy, and choice are emphasized within these findings (Mc. Carthy, 2014, Swango-Wilson, 2011, Azzopardi-Lane & Callus, 2014), there is very little discussion about how self-advocacy movements and groups could be used as a way to catalyze and promote discussions of sexuality among people with IDD. A notable exception to this is Azzopardi-Lane & Callus’s (2014) article, which presents conversations about sexuality as a method of advocating for oneself. Additionally, Moras (2011) discusses sexual self-advocacy in the context of a larger concept of sexual citizenship. The present study builds on these findings to more fully explore the concept of sexual self-advocacy. Methods 35 self-advocates participated in a community forum that used Nominal Group Technique (NGT) as a research method. NGT(Becker et al. , 2012; Delbecq & Van de Ven, 1971; Mc. Murray, 1994) has been used in previous studies as a valuable tool to examine the positions and beliefs of people with intellectual disabilities (Roeden, Maaskant, & Curfs, 2011; Roeden, Maaskant, & Curfs, 2012; Tuffrey-Wijne et al. , 2007). “what I will or will not consent to in an intimate relationship “what you want in life and [you can] choose to have sex with your partner if that’s what you want. ” Knowing and Respecting Myself. Being comfortable with oneself and respecting oneself is a process of constant learning that includes some level of self-concept in terms of wants, needs, desires, identity as well as learning to love oneself. “respect [and] dignity for oneself, ” “being comfortable with myself and feeling healthy whole physically in my self worth even if the relationship ends. ” Respect for others. Respecting other people in the way they express their sexuality and the choices they make. It is also about respecting the other person in a relationship in terms of their wishes. Communication demonstrates respect for others. “respect other people’s wishes in a relationship. ” “attending to the needs of my partner and respecting [them]” “being respectful of others’ sexuality in a healthy way” Respect my rights. The recognition of rights is a relational concept under which all people are protected. Self-advocates know that they have rights and that other people should respect their rights. “I have the right to share my opinions. ” “[you] have the right to be yourself” “if two guys want to get it. If two girls want to get it” Speaking up. Using one’s voice to advocate for oneself and others. Everyone has an opinion that is important and deserves to be heard and respected. Speaking up for others recognizes interdependence as well as supports other self-advocates. “telling someone what you want and what you don't want” “I have the right to speak up when other people talk about me. ” “the freedom to speak what’s on your mind and how you feel about being in a relationship. ” Getting information. Learning about relationships, sex, and safety. Equally important to this theme is how one can access information and from whom. Key factors include accessibility of information and individualized supports so information is meaningful and relevant to self-advocates. This included the importance of learning about both LBGTQ relationships and different types of relationships more generally. “I’m just wondering what about the different types of relationships. There is heterosexual, which is men and women, and there are other relationships of the same sex, there are different types of relationships. ” “family can help you learn. ” NGT provides a non-critical atmosphere for discussion and clear structure that makes it easy to conduct and easy for participants to understand (Mc. Murray, 1994). The research team used NGT because it was accessible for participants and it captured what we wanted to understand. Healthy relationships. Self-advocates value communication in relationships and have a feeling of mutual respect between partners. When a relationship is healthy, self-advocates feel comfortable, loved, happy and successful. They accept responsibility and express their sexuality in safe and healthy ways. Research/NGT Guiding Questions: • What does sexual self-advocacy mean to you? • What needs to change so that people can exercise their sexual self-advocacy? “sexual self-advocacy means being equal in a partnership that involves individuals being respectful of each other’s sexuality in a healthy way. ” “my boyfriend is nice and I like to be nice and respectful. ” Analysis The research team used open coding to analyze the items that self-advocates identified as being important to them, as well as things that they wanted to change. William Johnson, a self-advocate, and Katie Arnold, one of the researchers, co-facilitate the NGT. What Needs to Change: 1. Expand access to information and sexual health services. 2. Remove systemic barriers. 3. Educate others. 4. Increase access to counseling. 5. Develop opportunities for sexual expression. Implications Interdependence emerged as a core value of sexual selfadvocacy that runs throughout the seven themes presented here. Additionally, communication and respect played dual roles as facilitators of sexual selfadvocacy and as outcomes of sexual self-advocacy. These threads connected themes that self-advocates talked about, and demonstrate a platform from which to approach policy, practice and research implications. Potential policy applications of this study include a legislative mandate to increase the quality and context of education for staff, professionals and parents. A population -level awareness campaign will educate others about I/DD and sexuality while also attending to systemic barriers, which often include attitudes. There a number of ways that this study impacts practice. Using a method similar to the NGT within small group residential or community settings provides both structure and access. Additionally, staff could incorporate self-advocates’ input regarding policies about privacy, sexual activity and/or facilitation, as well as safety. Talking about sexuality with self-advocates as a part of life should be the standard, not the exception. Finally, we recognize that there are limitations to the present study. Our study was exploratory and qualitative in nature, and thus has limited generalizability. We do, however, believe that future research can and should incorporate interdependence, communication and respect into studies, both in method and in substance. For instance, recognizing the centrality of interdependence within sexual self-advocacy allows survey research in this area, for instance, to inquire about supports in a unique way. References Andron, L. , & Ventura, J. (1987). Sexual dysfunction in couples with learning handicaps. Sexuality & Disability, 8(1), 25 -35. Aunos, M. , & Feldman, M. A. (2002). Attitudes towards Sexuality, Sterilization and Parenting Rights of Persons with Intellectual Disabilities. 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