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“Remember Our Voices are Our Tools:” Sexual Self-advocacy as Defined by People with Intellectual and Developmental Disabilities

Abstract

This exploratory study examines how people with intellectual and developmental disabilities (IDD) define and experience sexuality in the context of their identities as self-advocates. Using nominal group technique this study found self-advocates described sexual self-advocacy as relating to knowing and respecting themselves, respect for others, choices, speaking up, having their rights respected, getting information, healthy relationships, and interdependence. They also explained facilitators that would increase their sexual self-advocacy such as expanding access to information and sexual health services, removing systemic barriers, educating others, increasing access to counseling, and developing opportunities for sexual expression. The significance of the study is the expansion of research on sexual self-advocacy by bringing the sexuality and self-advocacy literatures together, reinforcing the value of people with IDD as legitimate sources of information about their own experiences, and providing a sustainable and accessible research method for working with people with IDD.

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Notes

  1. Within the self-advocacy movement, multiple groups in the US have made strides in furthering the conversation about sexuality and how sexuality impacts the lives of people with IDD. However, this paper is largely focusing on disparities within research literature so discussion of these more ‘informal’ references is outside the scope of this paper.

  2. Boeije [32] provides explicit guidance in how to carry out CCM, especially in how to use theoretical sampling. In coding the material, ‘self-advocacy’ was used as the theoretical sample-a trajectory for the themes and ultimately the theoretical conception of self-advocacy.

  3. The term ‘healthy’ is used here not to denote a connection between morality and health (see [37]) but rather to demonstrate that adults with IDD can and do experience relationships in ranges similar to adults without IDD.

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Acknowledgments

This paper was sponsored in part by a Grant from the Institute on Policy and Civic Engagement at the University of Illinois at Chicago.

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The authors declare that they have no conflict of interest.

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Correspondence to Carli Friedman.

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Friedman, C., Arnold, C.K., Owen, A.L. et al. “Remember Our Voices are Our Tools:” Sexual Self-advocacy as Defined by People with Intellectual and Developmental Disabilities. Sex Disabil 32, 515–532 (2014). https://doi.org/10.1007/s11195-014-9377-1

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Keywords

  • Sexual self-advocacy
  • Self-advocacy
  • Intellectual and developmental disabilities
  • Sexuality
  • Sexual health
  • Social work
  • United States