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. 2023 Apr 25:1–11. Online ahead of print. doi: 10.1007/s11195-023-09789-9

Increasing Opportunities for Healthy Sexual Socialization in LGBTQ+ People with IDD: The Role of LGBTQ+ Organizations and Community

Ivanka Simić Stanojević 1,2,✉, Mika Baugh 1,✉, Kirsten M Greer 1,2,✉, Jennifer Piatt 1,2,✉, William Yarber 1,2,✉
PMCID: PMC10127948  PMID: 37362800

Abstract

In the current intersectionality-focused discourse within sexuality research, individuals existing at the convergence of intellectual and developmental disabilities (IDD) and lesbian, gay, bisexual, transgender, and queer+ (LGBTQ+) are often overlooked. Individuals with IDD face difficulties acquiring sexual knowledge and skills due to limited opportunities for sexual socialization, misconceptions concerning sexuality and IDD, lack of comprehensive sexual education, restricted support from staff and caregivers, and a lack of community experiences that facilitate the development of healthy sexuality. When an individual with IDD identifies as LGBTQ+, these disability-related barriers can exacerbate the stigma and discrimination some LGBTQ+ people experience. Using the intimate justice framework, we explore avenues to support and foster inclusivity within the LGBTQ+ community for members with IDD. Several recommendations were identified from the literature search, including logistical considerations and using accessible language for outreach events, presentations, workshops, training, and other activities and opportunities for sexuality education while challenging disability-related stigma in LGBTQ+ spaces.

Keywords: Intellectual and developmental disabilities (IDD), LGBTQ+, Sexual socialization, Sexuality, Intimate justice, Intersectionality, Inclusivity, United States

Introduction

Individuals with intellectual and developmental disabilities (IDD) who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ+) often experience a double stigma of being individual with IDD and belonging to a sexual minority and are often marginalized due to limited cognitive functioning and their sexual identity [1–3]. IDD is a “disability characterized by significant limitations in intellectual functioning and adaptive behavior”, influencing many everyday social and practical skills [4]. Contact with other people with the same intersecting identities is essential to affirm the experiences and identities of LGBTQ+ persons with IDD [5]. Moreover, LGBTQ+ people with IDD express a need for long-term romantic relationships, including love and respect [6–8]. Nevertheless, it is common for this marginalized population to experience both negative relationships and sexual encounters, as well as to encounter difficulties finding partners [9].

According to the World Health Organization (WHO), sexual health includes opportunities for pleasurable and safe sexual experiences that are free from coercion, discrimination, and violence [10]. Sexual socialization is vital to developing healthy sexuality as it is the process that encompasses obtaining knowledge, values, attitudes, and understanding of matters and issues related to sexuality [11]. Moreover, sexual socialization includes attaining beliefs about sexual identity [12], including LGBTQ+ identities. Limited access to agents of sexual socialization represents one of the most significant challenges for developing sexuality in LGBTQ+ persons with IDD [13]. Given that positive sexual socialization is a necessary component of healthy sexuality, the lack of sexual socialization imposes a barrier for LGBTQ+ individuals with IDD to develop healthy sexuality.

Unfortunately, these barriers create roadblocks for LGBTQ+ people with IDD and minimize opportunities for pleasurable and safe sexual experiences. Specific barriers exist for LGBTQ+ individuals, and a separate set of obstacles exist for people with IDD. A third, unique set of barriers is pertinent for individuals with this intersectional identity (IDD and LGBTQ+). This set of specific barriers includes misconceptions about sexuality and IDD [14], lack of comprehensive sexuality education and knowledge [15, 16], limited support from staff and caregivers [17], as well as restricted opportunities for sexual socialization [13] to explore LGBTQ+ identities [7]. Given that sexual health is a fundamental right and component of life [10], this specific set of barriers contributes to the marginalization of this population. Therefore, systemic ignorance and erasure of this group’s sexuality and sexual rights need to be addressed as it continues to be a source of marginalization against this group.

The absence of statistical information about LGBTQ+ individuals with IDD is concerning as it further points out the invisibility and lack of support for healthy sexual development in the individuals belonging to this intersectional identity. The authors of this paper believe it is essential that LGBTQ+ people with IDD have access to the LGBTQ+ community to gain sexual knowledge, have an opportunity to develop their own sexual values and attitudes, learn to assert their sexual agency (i.e., owning one’s sexuality), and advocate for sexual pleasure. Creating LGBTQ+ spaces accessible for persons with IDD is essential in fostering a welcoming, diverse community that allows individuals with IDD to explore their romantic and sexual interests.

Misconceptions and Stigma

Historically, the sexuality of individuals with IDD has been pathologized. Most commonly, they have been viewed as childlike, therefore non-sexual, or as dangerous and hypersexual individuals who cannot control their sexual impulses [6, 14, 18]. Because of a false narrative of being incapable of identifying and accepting their sexuality or being viewed as non-sexual beings, society tends to prioritize the IDD identity in this population because of the non-typical behavior and support needed for everyday functioning to the degree of nullifying their sexual identity [19]. Even if accepted as sexual beings, individuals with IDD are perceived as incapable of having an LGBTQ+ identity [5, 7, 20] because of assumptions about their limited cognitive abilities. Therefore, the heterosexual identity is typically imposed on them as the dominant sexual identity in most societies [7, 20, 21].

These societal misconceptions and stigma can be internalized by this population which further complicates the understanding and expression of their sexual identity causing mental and emotional strain, such as feelings of worry and/or anxiety [5, 7]. Consequently, LGBTQ+ individuals with IDD report that it was challenging to openly express their sexual identities to others [1, 22, 23]. Some decided not to disclose their sexual identity to protect themselves and others, including their family members, acquaintances, and service providers, from potential disappointment and adverse reactions to “coming out” [24]. Since lived experiences and the sexual rights of LGBTQ+ people with IDD are influenced by these misconceptions [3], it is crucial to shift the misconceptions of direct care staff, including the caregiver of the individual with IDD.

Limited Caregiver and Staff Support

Misconceptions around sexuality and IDD may play a role in staff and service providers’ (e.g., health care professionals, occupational therapists, recreational therapists, special educators) unwillingness to support the sexuality of their clients with IDD [25]. However, LGBTQ+ people with IDD wish to discuss sexuality with staff and caregivers and have recognition and support for their intersectional identities [7]. Finally, LGBTQ+ individuals with IDD expressed needing help from staff and service providers to build connections with LGBTQ+ communities and spaces that can facilitate learning about sexual norms from peers and finding potential romantic partners [6, 20].

Prior research suggests having LGBTQ+ role models may benefit the healthy development of sexual identity in LGBTQ+ people with IDD [9] since those who had access to LGBTQ+ staff disclosed having positive experiences discussing sexuality and non-heterosexual romantic relationships [22]. They viewed the LGBTQ+ staff as mentors and role models who provided support, acknowledged their intersectional identities, and cared for their well-being [6, 9, 25]. However, most LGBTQ+ people with IDD do not have the opportunity to be mentored by LGBTQ+ staff [6, 26].

Several studies reveal that staff frequently avoid getting involved in sexuality-related matters with their clients with IDD, believing it is not a part of their job [17, 24, 27]. Furthermore, some staff and caregivers openly oppose the non-heterosexual identities of their clients with IDD and actively ignore these aspects of their clients’ experience and identity [9, 22] due to the lack of knowledge and training, as well as personal beliefs. As a result, untrained staff do not address many of their LGBTQ+ clients’ with IDD needs [17, 25]. Educational training for staff would provide the knowledge and scripts on how to address the needs of their LGBTQ+ clients with IDD, regardless of their own beliefs. Therefore, access to appropriate, comprehensive sexuality education is needed for individuals with IDD and their families, caregivers, and professional staff [9].

Lack of Access to Comprehensive Sexuality Education

Despite the inclusive nature of comprehensive sexuality education (CSE), defined as an “…approach (that) recognizes and accepts all people as sexual beings and is concerned with more than just the prevention of disease or pregnancy …(that) covers a broad range of issues relating to the physical, biological, emotional and social aspects of sexuality” [28], it is often not provided to students with IDD [16]. Without exposure to instruction on various aspects of sex and sexuality, students with IDD who may identify as LGBTQ+ are rarely afforded the space and opportunity to gain information about healthy relationships, identity development, coming out, staying safe, and engaging in sexual behavior. Moreover, there is far less discussion and representation of LGBTQ+ individuals in the CSE classes, making it even more challenging for LGBTQ+ individuals with IDD to develop a knowledge base about sexuality and intimacy that applies to them.

Limited Opportunities for Healthy Sexual Socialization

LGBTQ+ people with IDD are commonly isolated from sources of sexual socialization due to previously mentioned societal misconceptions [29] and the belief that it is too risky for them to engage in sexual activities [30]. This limited access to sexual socialization in LGBTQ+ persons with IDD results in a lack of opportunity to explore facets of their sexuality [13]. Outside of school, the process of sexual socialization operates as an informal source of sexuality education, with various aspects of sexuality being acquired, including sexual knowledge, attitudes, and values [31] through a myriad of socializing sources, including media [32], family members, peers [33], cultural and religious values [34], but also some community-based programs (i.e.., the Sacramento County Parks and Recreation, Illinois Special Recreation Associations) even with the limited staff knowledge and training. Sexual socialization is a fundamental aspect of sexual development [35], resulting in adopting sexual norms which can shape intimate relationships and sexual behavior [34].

With limited social networks and dependence on family support and services provided by the community to help conceptualize and determine sexual identity, there are limited opportunities for sexual socialization of LGBTQ+ persons with IDD, including limited opportunities to find a partner [9, 36]. LGBTQ+ people with IDD have a unique sexual socialization experience [37] due to their intersecting identities [38], and their living situations (e.g., residing in group homes, assisted living facilities, living with parents).

One area where sexual socialization may be enacted is supported housing environments where many individuals with IDD, including LGBTQ+ individuals with IDD, reside. While the housing staff provides support for the activities of daily living, they also hold the role of gatekeepers to the sexual expression of their clients [39–41]. Therefore, with increased support comes increased surveillance of the expression of sexual identity and behavior, including potentially less access to supportive and knowledgeable people about LGBTQ+ resources, groups, and events.

For example, during the COVID-19 pandemic, LGBTQ+ people found support and community amongst each other [42]. Still, individuals with IDD experienced more loneliness and disconnectedness as many activities they enjoyed were unavailable. Few opportunities for social interaction outside their home were possible [43]. Isolation from sexual socialization that individuals with IDD often experience has been hypothesized as harmful and may result in sexual behaviors inconsistent with sexual norms, viewed as socially “inappropriate” [38]. Thus, this lack of exposure to sources of sexual socialization creates a disadvantage for LGBTQ+ people with IDD by making it difficult for them to learn about their sexuality in a way that is consistent with sexual norms allowing them to explore and participate in romantic and intimate relationships. As a result of the limited sexual socialization for LGBTQ+ people with IDD, it is necessary to evaluate this disparity through the lens of intimate justice.

Intimate Justice Framework and Sexual Agency

Intimate justice, a theoretical framework, posits that inequity (i.e., living with IDD and identifying as LGBTQ+) is experienced when an individual’s identity influences various facets of their life, for example, sexual and relationship well-being [44]. Previously, the intimate justice framework has been applied to individuals in the LGBTQ+ community but not to LGBTQ+ people with IDD. Current leaders in the field of sex and disability have advocated for the intimate justice perspective to be used within the field of sexuality and disability research [45]. Therefore, applying the intimate justice framework when examining the experiences of persons with IDD in the LGBTQ+ community, especially within the realm of the unique set of barriers they face, may be warranted. Sexual misconceptions and stigma experienced by LGBTQ+ people with IDD may be internalized and create negative perceptions about one’s sexual rights, the worthiness of pleasure, and sexual satisfaction [46], creating sexual inequity [44]. The internalized stigma may lead to fewer opportunities to build the applicable and relevant sexual knowledge base essential in facilitating the development of sexual agency [47].

Sexual agency refers to one’s ability to assert themselves in sexual contexts to navigate desired sexual outcomes [48, 49]. Additionally, sexual agency has many benefits, including, but not limited to, psychological well-being [50] and promoting sexual and reproductive health [51]. Previously, sexual agency has been noted as an attribute bound by opportunities, restrictions, and privilege [51]. To increase sexual agency in LGBTQ+ people with IDD, there needs to be fewer restrictions and more access to sexual socialization opportunities, as sexual expression is not the privilege of the heterosexual cis-gender population, but everybody’s right.

Promoting Healthy Sexual Socialization in LGBTQ+ People with IDD: Leverage the Strength of LGBTQ+ Organizations

With an aim towards inclusion for community members with IDD, there exists an opportunity for LGBTQ+ organizations, practitioners, and individuals to reach this population effectively and work towards its meaningful integration into the activities, resources, services, and richness of the LGBTQ+ community. Foundationally, efforts to reduce the stigma surrounding anyone, including LGBTQ+ people with IDD, are critical to their well-being and better quality of life. LGBTQ+ organizations and allied health practitioners and individuals are well-suited for this task. Recognizing that individuals with IDD can and do have LGBTQ+ identities and emphasizing it during outreach events, presentations, workshops, training, and other activities can help reduce stigma and introduce the idea that IDD does not preclude sexuality and LGBTQ+ identity.

Education and Training for the Staff and LGBTQ+ Community

As organizations, practitioners, and individuals move toward the inclusivity of IDD members, reciprocal information sharing and education may be helpful. That is, LGBTQ+ entities may not be experts in best practices for inclusivity as it pertains to the IDD population and should consider finding LGBTQ+ people with IDD from whom to learn. One suggestion is to collaborate with supported housing entities and/or organizations providing service to people with IDD and provide reciprocal staff training where caregivers and residents educate LGBTQ+ people on IDD and vice versa. This collaboration will reduce misconceptions and stigma on both sides, leading to each entity becoming better equipped to support LGBTQ+ people with IDD.

Educational Workshops for LGBTQ+ Individuals with IDD

Organizing educational workshops and presentations by utilizing the expertise and collaboration between the LGBTQ+ organizations and entities providing services to persons with IDD could offer the opportunity to LGBTQ+ persons with IDD to gain sexual knowledge and skills, further building sexual agency in this population. It would also allow for the further growth of partnership and trust between these entities through holding the workshops organized by the LGBTQ+ organizations within the supported housing area or welcoming the staff and their clients with IDD to their safe spaces. Additionally, educational workshops would create the opportunity for LGBTQ+ people with IDD to meet other LGBTQ+ role models and learn about self-advocacy from LGBTQ+ mentors. Finally, self-advocacy workshops for LGBTQ+ people with IDD would instigate empowerment and allow them to learn about self-advocacy and sexual rights to continue educating others as peer mentors.

IDD Inclusive Social Events

Once LGBTQ+ groups have increased awareness and engagement with their members with IDD, they can start making meaningful changes to their events and spaces that will welcome and encourage individuals with IDD to participate. Since LGBTQ+ organizations advocate for LGBTQ+ persons to be in leadership and have decision-making power, following the same principle would lead to hiring an LGBTQ+ individual with IDD as an expert consultant in this matter. If hiring a person with IDD is not feasible, organizations can still solicit feedback from IDD communities and work to create spaces and events where they feel welcomed.

Although many LGBTQ+ entities are involved in planning local Pride events that can be highly impactful and transformative for LGBTQ+ people, these events are not always inclusive of members with disabilities, especially those with IDD [52]. This lack of inclusivity can be changed by the LGBTQ+ organizations’ active recruitment of people with IDD to serve on planning committees for Pride and other events. Even without direct access to a person with IDD to help with planning, LGBTQ+ groups can take steps to make these events more inclusive. Here are some recommendations:

  1. Create a quiet area away from loud music, crowds, and lights.

  2. Host the event when the weather is not extreme or at a site with a temperature-controlled indoor space available.

  3. Ensure the ground is navigable with a wheelchair, walker, cane, or other mobility devices. Consult person(s) who use these devices rather than relying on a venue’s general accessibility statement.

  4. Consider adaptations for blind/low vision and Deaf/hard of hearing participants.

  5. Use plain language in marketing materials [53]. Intentionally put the vital information first, choosing words familiar to persons with IDD which are easy to understand.

  6. Host events at sites easily accessible using public transportation. Consider coordinating transportation with other organizations serving people with IDD. Sometimes getting to an event is the most challenging barrier to overcome [54].

  7. Offer mentored or partnered experiences for event attendees with IDD by recruiting, vetting, and training members of the LGBTQ+ community to be mentors or partners for people with IDD at large events. This practice will ensure that the experience is less overwhelming, and individuals with IDD can feel more comfortable asking for additional support to enjoy the event.

Conclusion

Some growth in studies focusing on the LGBTQ+ population with IDD has been recorded recently [14, 23]. Nevertheless, given the noticeable sexual inequities among LGBTQ+ with IDD [21], research in this area is minimal and is often more than ten years old [3, 7, 25, 55]. The existing body of knowledge reveals issues this population experiences in expressing their sexuality and learned obedient behavior, which results in other people managing their lives and making decisions in their place, and being disconnected from the broader population, including peers without IDD and/or those who identify as LGBTQ+ [56]. Future research in this area is needed and could be focused on how LGBTQ+ organizations and individuals enact the recommendations provided herein. Additionally, work that centers the voices and experiences of this group, which is lacking herein, is critical to the efforts of advancing the literature, as well as increasing knowledge and ability to actively include LGBTQ+ individuals with IDD in community organizations, events, discourses, and relationships.

Because of the increased marginalization and segregation, there is a need to establish connections between LGBTQ+ persons with IDD and other groups and individuals that could act as role models and provide opportunities for socialization to reduce their exclusion and vulnerability. Therefore, we encourage LGBTQ+ organizations, communities, and practitioners to develop training and education for staff and the LGBTQ+ community on sexuality and IDD. Moreover, we call to action all stakeholders to provide educational workshops for LGBTQ+ individuals with IDD to increase sexual knowledge, skills, and self-advocacy and promote sexual agency. Finally, by organizing IDD-inclusive social events providing access to positive sexual socialization of LGBTQ+ people with IDD, the LGBTQ+ community and organizations could create an equitable environment for the development of healthy sexuality in this underrepresented population.

Author Contribution

All authors contributed to the study conception and design. Literature search and data analysis were performed by Ivanka Simić Stanojević, Mika Baugh, and Kirsten Greer. The first manuscript draft was written by Ivanka Simić Stanojević, Mika Baugh, and Kirsten Greer, and all authors commented on previous manuscript versions. Jennifer Piatt and William Yarber critically revised the manuscript. All authors read and approved the final manuscript.

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Declarations

Competing Interests

The authors have no relevant financial or non-financial interests to disclose.

Footnotes

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Ivanka Simić Stanojević, Email: isimics@iu.edu.

Mika Baugh, Email: mikabaug@indiana.edu.

Kirsten M. Greer, Email: kigreer@iu.edu

Jennifer Piatt, Email: jenpiatt@indiana.edu.

William Yarber, Email: yarber@indiana.edu.

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