Beyond Barrier Removal: Envisioning Sexual Rights-Based Services for Women Labeled with Intellectual Disability

Background and Purpose: Sexually intimate relationships are critical to the physical and mental well-being of many people. However, women labeled with intellectual disability (ID) are routinely prohibited from sexual relationships (Black & Kammes, 2019), which impedes fulfillment of their human rights (WHO, 2017). Capacity to sexual consent (CTSC) laws pose the most widespread policy barrier to such relationships by requiring ID-labeled women to meet external evaluative standards prior to engaging in sexual relationships (Lyden, 2007). Under a human rights framework, this study queries disability providers’ ideas for an alternative rights-based paradigm for practice.

Methods: This study surveyed 165 disability professionals (M_age=40 years) across the U.S. Participants were recruited via state Home and Community-Based Services (HCBS) email databases as well as relevant professional listservs. Participants had to be employed: 1) by a residential service used by ID-labeled people (68%); 2) an advocacy or policy-based organization affecting such services (22%); or 3) directly by an ID-labeled person to provide care (10%). A majority described themselves as women (62%), heterosexual (64%), and white (68%). As part of a larger survey about CTSC policy, providers were prompted to describe how disability services and staff should address ID-labeled women’s sexuality if all ID-labeled women were permitted to have sexual relationships. I used the semantic approach to thematic analysis (Braun & Clarke, 2006) to analyze the responses of the 70% of providers who shared substantive ideas.

Results: Disability practitioners’ ideas were encapsulated by two broad themes: 1) enhancing women’s environment and 2) centering the individual. The first targeted the macro-level conditions and opportunities surrounding ID-labeled women. These were further categorized in three sub-themes: setting a policy and training foundation to provide guidance for direct care providers (discussed by 17% of providers offering substantive responses); surrounding women with a suite of services to support their sexual health (e.g., sex education, counseling, routine STI testing; 60% of providers); and protecting women without protectionism by obstructing exploitation rather than women’s rights (19% of providers). The second main theme, centering the individual, encapsulated providers’ suggestions for engaging ID-labeled women at a micro-level in practice. The three sub-themes included proposals for: engaging women with affirmation and non-judgement to demonstrate respect for women’s sexuality (9% of providers); eliciting women’s wishes for her socio-sexual life to ensure services are structured appropriately (10% of providers); and respecting her autonomy, by recognizing that ID-labeled women are entitled to take risks in their sexual lives, just as all people do.

Conclusions and Implications: For decades, people labeled with ID have advocated that services honor their right to sexual intimacy (Gill, 2015). These findings complement both their advocacy work as well as research elevating providers’ calls for rights-based services (Ginn, 2022). I employ the Capabilities Approach (Nussbaum, 2011) to argue that variation in ability and vulnerability entitle ID-labeled women to enhanced and accessible resources which honor their human rights and self-determination. Drawing on these findings, I propose an alternative rights-based policy and service paradigm designed to simultaneously enable relationships, counteract exploitation, and uphold individual liberty.