Supporting positive sexual health for persons with developmental disabilities: Stories about the right to love

Abstract

Accessible Summary• This research is about the sexual rights of persons with developmental disabilities.• For 12 months, nine adults with developmental disabilities and three allies created videos about love and intimacy.• The group found that family members, caregivers and support workers can make it hard for people with developmental disabilities to learn about and experience healthy relationships.• This research is important because it promotes the experiences and perspectives of persons with developmental disabilities, which can hopefully lead to positive changes in attitudes and service delivery that support positive sexual health. AbstractBackground: Although sexual rights are human rights, persons with developmental disabilities are often excluded from developing positive sexual health due to societal attitudes, stigma, a lack of education and limited opportunities. Methods: As a part of a 12-month participatory action research study in a westernCanadian province, nine adults with developmental disabilities and three allies created videos that explored the dimensions of sexual health as experienced by people with developmental disabilities. Participants were involved in all stages of the filming process. The filming topics identified by the participants emerged as the core research themes. Results: Persons with developmental disabilities often have limited opportunities to develop and nurture intimate relationships. Participants also identified that: (a) a lack of support from caregivers, (b) a lack of education about sexual health, (c) ableist spaces and (d) the absence of agency policies that acknowledge and protect sexual rights create further obstacles. Conclusions: Inclusive practices where the sexual rights of persons with developmental disabilities are respected and celebrated are critical in promoting positive sexual health. For many agencies, this requires reframing policies and programmes that include acknowledging and protecting the sexual rights of persons with developmental disabilities. While providing accessible pedagogical opportunities about sexual health was identified as important, ensuring curriculum delivery for support 256 | SITTER ET al. 1 | INTRODUC TI ON This article describes select findings from a 12-month participatory action research study where a group of adults with developmental disabilities 1 created a series of videos that explored the dimensions of sexual health. Through the process, participants identified a number of barriers and needed supports in the area of sexual rights. The article begins with a brief overview of the literature about sexual health and disability, followed with a description of the research process. The results indicate persons with developmental disabilities have limited opportunities to foster and experience intimacy. These limited opportunities are primarily due to a lack of support from caregivers, minimal access to education about sexual health, the predominance of ableist spaces, and the absence of agency policies that acknowledge and protect ...

How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review

“…• Cameras and video cameras were used to collect data (Bigby & Frawley, 2010;Morgan & Moni, 2013;Paiewonsky, 2011;Sitter et al, 2019;Strnadov a et al, 2016;White & Morgan, 2012).…”

“…• Team members attended a workshop to learn how to interview, work the camera and direct (Sitter et al, 2019).…”

“…Video-based data analysis While watching video-recorded data, team members work as a group to identify data to extract, or analyse the data (e.g., identify themes and subthemes, (Morgan & Moni, 2013;Sitter et al, 2019;Stanley et al, 2019;White & Morgan, 2012;Williams et al, 2010).…”

“…Video Team members created videos to describe and share the research process or research findings (Cumming et al, 2014;Davidson, 2015;Deepak et al, 2014;Dowling et al, 2019;Frankena et al, 2019;Haigh et al, 2013;Riches & O'Brien, 2017;Ryan et al, 2015;Schwartz & Durkin, 2020;Sitter, 2012;Sitter et al, 2019;Stanley et al, 2019;Strnadov a et al, 2016).…”

“…In-person Paiewonsky, 2011;Sitter et al, 2019;Strnadov a et al, 2014Strnadov a et al, , 2016White & Morgan, 2012), or audio recordings of interviews (Bigby & Frawley, 2010;Bonham et al, 2004;Morgan et al, 2015;Northway et al, 2014;Powers et al, 2007;White & Morgan, 2012). In addition, two remote research teams used web/teleconferencing (e.g., Skype or…”