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Abstract

In this article, we discuss practical lessons for promoting meaningful collaboration in inclusive and community-based participatory gender and sexualities research with LGBTQ+ people with intellectual and/or developmental disabilities. First, we describe the historical and ongoing exclusion from research engagement of people with intellectual and/or developmental disabilities and the importance of including LGBTQ+ people with intellectual and/or developmental disabilities in inclusive and community-based research projects that address gender and sexuality. Then, we provide reflections on how we are striving to embrace core principles of community-based participatory research in our current gender and sexualities research projects. Finally, we end with a call to action for future meaningful and collaborative research that addresses gender and sexuality in the lives of people with intellectual and/or developmental disabilities.

Keywords

gender sexuality intellectual disability developmental disability inclusive research participatory action research qualitative methods

Introduction

People with intellectual and/or developmental disabilities¹ continue to be excluded from meaningful engagement and participation in all stages of research (Howell & Shogren, 2019; McDonald et al., 2013; Santinele Martino & Fudge Schormans, 2018). This exclusion is magnified when research endeavors seek to address gender and sexuality, and to understand the experiences and perspectives of LGBTQ+² people with disabilities (Santinele Martino & Fudge Schormans, 2018). Qualitative gender and sexualities research in collaboration with co-researchers and advisors with intellectual and/or developmental disabilities has the potential to recognize gender and sexual diversity and improve supports and services, thus promoting gender and sexual self-determination in the lives of people with intellectual and/or developmental disabilities (McCann et al., 2016; Smith et al., 2022; Strang et al., 2019). Drawing from core principles of community-based participatory research (Israel et al., 2011), we strive to provide practical guidance on engaging in accessible and collaborative gender and sexualities research with LGBTQ+ people with intellectual and/or developmental disabilities. Specifically, we describe finding shared community, building on strengths, facilitating collaborative partnership, and promoting empowerment. We hope the perspectives shared in this article can support future inclusive and community-based participatory research projects that address topics of gender and sexuality, and support gender and sexual expression in the lives of people with intellectual and/or developmental disabilities.

Historical and Ongoing Exclusion

Traditional research approaches have denied self-determination to people with intellectual and/or developmental disabilities. Historically, people with disabilities have been the target of exploitation and dehumanization in research, often treated as experimental ‘subjects’ (McDonald et al., 2013; Santinele Martino & Fudge Schormans, 2018; Wehmeyer, 2013). The perspectives of people with intellectual and/or developmental disabilities have been commonly excluded from the literature based on the ableist notions that they are incapable of providing meaningful narratives, unable to make informed decisions of their own and provide consent, or simply too vulnerable to participate in research (Howell & Shogren, 2019; McDonald et al., 2013). These ableist notions have led to institutionalized forms of gatekeeping, such as barriers to research participation codified by Institutional Review Boards (IRB; McDonald et al., 2015; Santinele Martino & Fudge Schormans, 2018). For example, IRBs may label people with intellectual and/or developmental disabilities as “lacking capacity to consent” and require the consent of court-appointed guardians, while failing to ask for information about accessibility and community involvement of people with disabilities throughout the research process (Flicker et al., 2007; Howell & Shogren, 2019). Subsequently, researchers often seek other people, such as family members, teachers, and direct care workers, to speak for disabled people (Kelly et al., 2009).

The issue around gatekeeping is further accentuated by the fact that many adults with intellectual and/or developmental disabilities have court-appointed guardians (approximately 40% in the U.S.; National Council on Disability, 2018). When an adult with an intellectual and/or developmental disability has a court-appointed guardian, IRBs often require the consent of the court-appointed guardian for the adult to participate in research (Howell & Shogren, 2019). Although this process is intended to protect the rights of research participants, it also has the potential to deny agency to people with disabilities, introduce additional risk, and prevent people with disabilities from sharing their perspectives on stigmatized topics that guardians may feel uncomfortable with (Santinele Martino & Fudge Schormans, 2018). There are widespread ongoing advocacy efforts of people with intellectual and/or developmental disabilities to remove unjustified guardianships and create more agentic alternatives to guardianship (Howell & Shogren, 2019; Jameson et al., 2015). Thus, requiring guardianship consent in all research projects does not reflect this advocacy and instead denies agency to disabled people.

When people with intellectual and/or developmental disabilities are considered eligible for research participation, the accommodations available to them may be insufficient for them to meaningfully share their perspectives and experiences (e.g., written surveys may not be accessible to some people with intellectual and/or developmental disabilities who do not read or write independently; Kidney & McDonald, 2014; McDonald et al., 2013). Also, people with intellectual and/or developmental disabilities have often been excluded from accessing research findings, as research is often published in academic journals and written in academic jargon, which is inaccessible to many people with intellectual and/or developmental disabilities.

This ongoing exclusion from research participation is often magnified when projects focus on topics considered to be sensitive, such as sexuality, intimacy, and pleasure (Santinele Martino & Fudge Schormans, 2018). People with intellectual and/or developmental disabilities are often mischaracterized as “perpetual children” and infantilized, and thus misperceived as requiring protection from research which includes discussions of sexuality (Azzopardi-Lane & Callus, 2015). Guardianship barriers to conducting or participating in research are especially relevant for gender and sexualities research, which includes topics that may be considered taboo or concerning by some court-appointed guardians (Kammes et al., 2020; Sinclair et al., 2015). Historically, caregivers have had more space to discuss experiences of gender and sexuality compared to people with intellectual and/or developmental disabilities themselves (Santinele Martino & Fudge Schormans, 2018).

Despite this exploitation and exclusion, people with intellectual and/or developmental disabilities have expressed that, if there is trust and accessibility, they are interested in participating in and conducting research that could improve quality of life for people in their communities (Kramer et al., 2011; Nind & Vinha, 2014; Schwartz et al., 2020; St. John et al., 2018), including research about gender and sexuality (Santinele Martino & Fudge Schormans, 2018; Strang et al., 2019). Inclusive and community-based participatory research approaches, specifically, have the potential to recognize gender and sexual expression in the lives of people with intellectual and/or developmental disabilities, promote relevant and valued supports and services, and ultimately improve quality of life through gender and sexual self-determination (McCann et al., 2016; Smith et al., 2022; Strang et al., 2019).

Inclusive and Community-Based Participatory Research Approaches

Inclusive research is an umbrella term to describe a range of research approaches in which people with intellectual and/or developmental disabilities collaborate with researchers with academic training as advisors or co-researchers on projects that impact their communities (Walmsley & Johnson, 2003). Participatory research, one such inclusive research approach, is premised on (1) centering issues that matter to historically marginalized communities; (2) including and acknowledging their contributions; and (3) respectfully engaging with these communities throughout the research process (Baum et al., 2006; Walmsley & Johnson, 2003). Similarly, community-based participatory research is premised on engaging in research collaboration, with an emphasis on engaging with communities to address their research questions and promote meaningful social change within their communities (Minkler & Wallerstein, 2011). The core principles of community-based participatory research include (1) recognizing community as an aspect of identity, (2) building on the strengths of communities, (3) engaging in collaborative partnerships, and (4) promoting empowerment, among others (Israel et al., 2011). Inclusive and community-based participatory research approaches are consistent with the advocacy efforts of people with intellectual and/or developmental disabilities to serve as “decision makers and planners” in issues that impact their lives (Self Advocates Becoming Empowered, 1996-1997).

Inclusive and community-based participatory research approaches can make “research more collaborative and relevant” (Nind, 2014, p. 525) and bring the skills of academic researchers and people with intellectual and/or developmental disabilities together, “to generate new knowledge that neither group could do alone” (Bigby et al., 2014, p. 8). Inclusive and community-based participatory research approaches also emphasize the necessity of research that leads to concrete and meaningful action that can improve material conditions for the community engaged in the collaboration (Bradbury-Huang, 2010). Community-based participatory research projects emphasize action to promote social change in both the process and outcomes of the research project, and build capacity and empowerment in communities, while addressing relevant and valued research questions. (Fine et al., 2021; Kincheloe et al., 2011; Stack & McDonald, 2018). Additionally, community-based participatory research approaches create the potential for research collaborations in which collaborators with multiple historically marginalized identities, such as LGBTQ+ disabled people who are Black, Indigenous, or people of color, can bring unique insights that recognize complex contributors to structural racism and oppression (Chmielewski et al., 2016; Yull et al., 2018). Knowledge and action resulting from the research collaboration can then be shared in accessible and practical ways within local communities in addition to circulation within academic communities.

Inclusive and Community-Based Participatory Gender and Sexualities Research

Inclusive and community-based participatory research approaches are especially important for research endeavors that seek to address lived experiences related to gender and sexuality. Due to the enduring misperception that people with intellectual and/or developmental disabilities are uninterested or unable to have sexual lives, little extant research examines their experiences or perspectives on this topic (Brown & McCann, 2018; Ditchman et al., 2016; Friedman et al., 2014). Consequently, there continues to be a lack of relevant and accessible resources and supports that promote gender and sexual expression for people with intellectual and/or developmental disabilities (Atkinson et al., 2022; Brown & McCann, 2018; McDaniels & Fleming, 2016).

Recognizing Gender and Sexual Diversity

As Santinele Martino (2017) has noted, the “pervasive heteronormativity in most of the literature, coupled with the assumption that disabled people cannot identify as queer, has obscured the rich array of sexualities among individuals with disabilities” (p. 1). It is crucial for research to center the experiences and perspectives of LGBTQ+ people with intellectual and/or developmental disabilities themselves. This can facilitate our understanding of the unique and complex experiences of individuals with intersecting LGBTQ+ and disability identities, and to develop better supports and resources that promote gender and sexual self-determination (Blanchett, 2002; Santinele Martino, 2017; Strang et al., 2019). In their discussion of community-based participatory design research that impacts autistic gender-diverse people, Strang et al. (2019) noted the importance of the perspectives of autistic gender-diverse people in research projects related to their lives. The authors, many of whom were autistic co-researchers, describe the potential for non-autistic and non-gender-diverse researchers to misinterpret the complex identities and experiences of their community. Collaboration with LGBTQ+ adults with intellectual and/or developmental disabilities throughout the research process is more likely to prevent misinterpretation and address the priorities of their community. For example, while most studies on autism and gender diversity have focused on rates of co-occurrence, research collaboration with community members has led to projects that emphasize their experiences and meeting their support needs.

Addressing the Lack of Supports and Services

People with intellectual and/or developmental disabilities, including those with LGBTQ+ identities, commonly face a lack of services and resources that appropriately address their needs and experiences (McCann et al., 2016; Santinele Martino, 2017; Sinclair et al., 2015; Smith et al., 2022; Wilson et al., 2018). They rarely have an opportunity to access spaces that are queer and sex-positive and that are accessible, and thus, many have reported feeling socially isolated and having to negotiate their identities with limited community support (Lewis et al., 2021; Santinele Martino, 2017; Wilson et al., 2018). In addition, caregivers, including family members and disability service providers, may struggle to support people with disabilities when it comes to sexuality due to discomfort and lack of resources (Atkinson et al., 2022; McCann et al., 2016; Smith et al., 2022). Many LGBTQ+ people with intellectual and/or developmental disabilities rely on supports and services from caregivers who hold heteronormative and cisnormative assumptions, express negative attitudes toward LGBTQ+ identities, or place limits on their gender and sexual expression (Kafer, 2003; McCann et al., 2016; Smith et al., 2022). We hope the following insights from our ongoing inclusive gender and sexuality research projects can contribute to efforts to address this lack of supports and services by providing practical guidance that promotes inclusive and community-based participatory gender and sexualities research.

The Rainbow Inclusion Speaking Up Project

The first author, Oscar, is a former high school special education teacher of students with intellectual and/or developmental disabilities, who is currently pursuing a PhD in special education. As a gay transgender teacher, he is especially passionate about promoting access to gender and sexual expression for youth and adults with disabilities. In this article, he shares lessons learned based on his ongoing qualitative dissertation project examining the experiences and desired supports of LGBTQ+ adults with intellectual and/or developmental disabilities in the United States. His research occurs in collaboration with a team of three LGBTQ+ co-researchers with intellectual and/or developmental disabilities, whom he knew from previous work with a local self-advocacy organization. The research project began when one of the co-researchers voiced interest in learning more about supporting LGBTQ+ people with intellectual and/or developmental disabilities. Oscar then completed an IRB application to form The Rainbow Inclusion Speaking Up (RISE Up) Project and received two small graduate student grants from his university to compensate the co-researchers and participants. The co-researchers then began meeting monthly in September 2021, where they developed the interview protocols. Oscar conducted the interviews and organized the findings into major themes with representative quotes and vignettes and presented these to the co-researchers. Based on the interview findings, the co-researchers decided they wanted to create a guidebook for caregivers, such as family members and disability service providers, about supporting LGBTQ+ people with intellectual and/or developmental disabilities. The research team continues to meet monthly to collaboratively write the chapters to be included in the guidebook, which will then be made publicly available and distributed online for free. (The guidebook is expected to be available beginning in May 2023 at WeAreMASS.org/rainbow.) Oscar and the co-researchers regularly co-lead training and presentations to share the research findings.

The Queering Disability Project

The second author, Alan, is currently an assistant professor in a disability studies program. He is openly queer and disabled and, as a community member and a community-based researcher, he has built long-standing relationships with community organizations supporting disabled and LGBTQ+ people. He is currently leading a qualitative research project focused on the intimate lives of 2SLGBTQ+ people labeled/with intellectual and/or developmental disabilities in Canada. Prior to that, based on discussions with self-advocates and service providers, he conducted an exploratory, qualitative study to gain preliminary insights into the sexual experiences of gay, lesbian, and bisexual people labeled/with intellectual disabilities. The research team for his current project includes the principal researcher, two service providers (one from the disability services sector and another that provides services to queer and trans youth), two queer people labeled/with intellectual disabilities who serve as advisors, and two research assistants. Honoraria for the two advisors on the team were included in the project budget from the start. This is both in recognition of the contributions of disabled people to the research project and the fact that people with disabilities in Canada are more likely to be living under poverty lines compared to nondisabled people (Crawford, 2013). The team has worked collaboratively in all aspects of the research process, from conceptualizing the aims and scope of the project, to co-producing an interview guide that is written in plain language and addresses everyone’s questions. The team meets on a regular basis, sometimes all together at the same time, sometimes in smaller groups. The deliverables from this project will include traditional material (e.g., publications, conference presentations), as well as more wide-reaching ones (e.g., free-of-cost webinar, infographics, resource lists).

Practical Reflections for Conducting Inclusive Gender and Sexualities Research

Below we discuss how we strive to embrace core principles of community-based participatory research in our ongoing inclusive gender and sexualities research projects. We focus our reflections on details which we feel are unique to gender and sexualities research projects in collaboration with people with intellectual and/or developmental disabilities. We discuss specifically: (1) finding community through shared identities, values, and trust (2) building on community strengths and resources, (3) maintaining collaborative partnerships, and (4) promoting empowerment. We believe these reflections provide practical lessons to support collaborative and impactful future studies in this area.

Shared Community

Shared values and identities provide the necessary foundation for trust and collaboration in our inclusive research projects with LGBTQ+ people with intellectual and/or developmental disabilities. Throughout The RISE Up Project, familiarity, enduring relationships, and shared LGBTQ+ identity have promoted Oscar’s trusting connections with his research team and participants. Oscar feels that he was better able to establish a sense of trust and equality with the research team because of his demonstrated commitments to providing support and following their lead on past projects, and his enthusiasm for a project guided by their perspectives (Schwartz et al., 2020). In the preparation of this article, the co-researchers shared that because professionals in their lives have come and gone so frequently, they find it especially difficult to trust new people who claim to be supporters. The RISE Up Project co-researchers appear more comfortable participating on the research team and sharing their perspectives honestly because Oscar had already demonstrated a level of trustworthiness. Oscar has also been open about his own gay and transgender identities, which has been a source of solidarity and understanding between the members of the team. Similarly, many of the interview participants knew Oscar was LGBTQ+ or asked if he was and expressed feeling more comfortable because they shared identity within the LGBTQ+ community. That said, Oscar does not have an intellectual and/or developmental disability, which may have limited trust and understanding with his co-researchers and participants. Inclusive research projects in which co-researchers with intellectual and/or developmental disabilities conduct data collection have the potential to further promote trust and solidarity between researchers and participants.

As Alan has consistently noticed throughout his work, it is also important to build a sense of shared community with other social actors who often can act as gatekeepers in the lives of disabled people, such as family members, legal guardians, and service providers. At times, researchers seeking to conduct research focused on disability and sexuality are confronted with hesitation and even suspicion from caregivers and service providers (see, for example, Santinele Martino, 2022a). The research participation of disabled people can be highly influenced by the views, and sometimes even court-appointed decision-making power, of caregivers. Gaining the trust of gatekeepers, especially gatekeepers of a social group that is often considered to be vulnerable, can be essential to ensure collaboration with and participation of disabled people in research. Disabled people themselves may sometimes rely on these other social actors to understand recruitment material, facilitate communication with researchers, support with transportation, and provide a space for research engagement. In his research practice, Alan has, at times, met with parents and siblings, for example, to clarify the purpose of the study and offer them an opportunity to ask questions. Due to protectionism from family members and other caregivers, the recruitment of people with intellectual and/or developmental disabilities can be challenging (Santinele Martino & Fudge Schormans, 2018); however, having relationships with service providers and family-led groups can be crucial in facilitating access to potential participants. In fact, many participants in The RISE Up Project had heard about the study from supportive service providers to whom they had disclosed their LGBTQ+ identity. Of course, ultimately, it is important that people with intellectual and/or developmental disabilities and are not pressured or forced to participate and make their own decisions about whether to conduct and participate in research.

Building on Strengths and Resources

Building on the strengths and resources of community partners in inclusive research means seeing people with intellectual and/or developmental disabilities as capable and insightful people who can make meaningful contributions to knowledge and action as researchers and research participants. Unfortunately, barriers to engagement and participation in research persist. For instance, in one of his previous projects on disability and sexuality, Alan was asked during a full ethics committee board meeting if people labeled/with intellectual disabilities would be “able to give [you] any good data at all.” Instead, this board member suggested he was “highly encouraged to speak with the parents or support workers” of disabled people instead. At multiple occasions, it took Alan months to gain ethics approval, requiring pages and pages of written responses and cited literature, endless emails, phone calls, one-on-one meetings, and full board meetings.

Adults with intellectual and/or developmental disabilities with court-appointed guardians may wish to share their perspectives on gender and sexuality, and improve gender and sexuality supports and services, but may not feel comfortable or safe disclosing this research topic to their court-appointed guardians. Thus, mandating guardian consent may introduce unnecessary additional risks or limitations for research projects addressing the gender and sexual lives of people with intellectual and/or developmental disabilities. In fact, Oscar has worked with LGBTQ+ adults with intellectual and/or developmental disabilities whose court-appointed guardians did not know they were LGBTQ+ or who were unsupportive or antagonistic toward their LGBTQ+ identity. Thus, requiring guardian consent could mean that some participants are either forced to disclose their LGBTQ+ identity to obtain consent to participate, or denied the opportunity to participate by unsupportive guardians. Arguably, it is especially important that we understand the struggles and support needs of LGBTQ+ adults whose decision-making is controlled by guardians who are unaware or unaccepting of their gender or sexual identity.

The RISE Up Project IRB Process

In the case of The RISE Up Project, through discussion of these issues, Oscar and the IRB were able to develop a research protocol that we feel presumed competence and honored agency and privacy, while reducing risks and safeguarding well-being, and ultimately allowed for the waiver of court-appointed guardian consent in particular circumstances. First, the IRB determined that if the person can demonstrate the ability to consent to participate in a specific research activity, the consent of the participant’s court-appointed guardian is not required. Then, Oscar developed a consent process that was designed to be accessible to potential participants and attuned to possible misunderstanding or hesitancy about the project. If Oscar observed any of the specified signs that the participant did not or could not provide informed consent, then the participant could include their guardian in the informed consent process. If the participant did not have a court-appointed guardian or felt that informing their guardian about the study could jeopardize their well-being, then informed consent was waived and the participant could give assent with an assent monitor they designated (e.g., a familiar supporter or a local disability advocate). The role of the participant’s chosen assent monitor was to attend during the assent process, monitor for any signs of confusion or coercion, help clarify the study description, and provide advice to the participant. Study participation was then ultimately decided by participant assent. This was based on an important resource from the self-advocacy movement, Supported Decision-Making, an alternative to guardianship where adults with intellectual and/or developmental disabilities can designate trusted supporters when making their own decisions (Howell & Shogren, 2019; Jameson et al., 2015). We feel that this process provides a useful model for future collaborative partnerships, to prevent unnecessary risk and safeguard co-researcher and participant well-being, while adapting to individuals’ support needs and promoting agency and privacy. (See Figure 1 for a detailed graphical representation of the approved consent/assent process; contact the first author with additional questions about this process.)

Figure 1.

The RISE Up Project IRB-approved consent/assent process.

Collaborative Partnership

Empowerment for truly collaborative partnership is facilitated by shared leadership and accessibility (Schwartz et al., 2020; Stack & McDonald, 2018). Inclusive research teams have published guides and toolkits on engaging in collaborative partnerships with people with intellectual and/or developmental disabilities, with recommendations on sharing power and accessibility (see Kidney & McDonald, 2014; Nicolaidis et al., 2019; O’Brien, 2022; Preparing Individuals with IDD for Engagement in Research During Public Health Emergencies and Disasters Research Team, 2020). Use of accessible language is important to inclusive gender and sexualities research with collaborators with intellectual and/or developmental disabilities. Research materials should use language access strategies when necessary, such as plain language and easy-read text, pre-meetings to prepare for research team collaboration, reading materials aloud, and/or including visual supports (see the Supplementary Material for example plain language and visual materials from The RISE Up Project).

In addition to general language access strategies, we recommend that research teams expand their use of language to describe gender and sexuality as to not marginalize people who may have unanticipated ways of discussing their gender and sexual identities and experiences. To illustrate how one can never take meanings for granted, in a previous study conducted by Alan focused on the romantic and sexual lives of adults labeled/with intellectual disabilities, when a participant was asked if he had ever had sex, he quickly replied, “no.” Yet, as the interview continued, the participant shared that he had previously “made love” with someone. This was a reminder to the researcher of the importance of understanding how participants make sense of sex and sexuality from their own standpoint.

We also know that the ways communities discuss gender and sexuality can vary, and that this can be influenced by social identities and experiences, such as race, class, and access to formal education. There is much variation in language use within the LGBTQ+ community (e.g., there continue to be class and generational differences in perceptions and usage of terms such as ‘gay’, ‘queer’, ‘transgender’, ‘transsexual’, and ‘non-binary’; Bragg et al., 2018; Robertson, 2019; Valentine, 2007). Valentine (2007), for example, documented the ways in which the experiences of gay-identified poor people of color have been erased by white scholars and public health officials who labeled them as “transgender.” People with intellectual and/or developmental disabilities may not communicate about gender and sexuality using terminology that academic researchers or social movements use.

Both authors have consistently seen how people with intellectual and/or developmental disabilities frequently face a “limited menu of possibilities that rarely includes LGBT[Q]+ identities,” which means that some people may not have the vocabulary or may not use expected vocabulary to articulate their queer desires or trans identities (Santinele Martino, 2020, p. 15). For example, when Oscar asked participants, “What is your gender identity?”, one participant replied, “I never think about that, gender identity. Like male or female?” Oscar responded, “Yeah, some people say male or man or female or woman.” The participant then described herself as, “I could be half and half, I could say that” and explained, “I feel like a woman inside of me. I know I look like a guy. I know I was a guy. Now I feel like a woman.” This participant did not identity as transgender or non-binary, and did not appear familiar with the terms, even though her identity could be perceived as meeting definitions of those identity terms. Instead, she had her own way of putting her gender into words. To provide another example, a few transgender participants, when describing their gender identity, stated that they were a certain sex or were born a certain sex, rather than using the terminology of sex assigned at birth, which is common among academics engaged in gender and sexualities research (Cahill et al., 2014; GenIUSS Group, 2014).

Promoting language access within gender and sexualities research means avoiding assumptions or expectations about the words that people use or understand, and instead learning the ways in which people describe and define themselves. As is arguably the case in gender and sexualities research more broadly, inclusive researchers should be careful not to expect or enforce specific ways of describing or understanding gender and sexuality, which could limit the self-expression of co-researchers and participants with intellectual and/or developmental disabilities. Using multiple-choice surveys or questions with limited options, for example, can restrict the possibilities of how people can define who they are. Instead, we suggest that researchers strive to understand how individuals and communities describe themselves and to use this vocabulary to communicate effectively with collaborators, without judgment.

Co-Learning and Empowering

Most often, studies addressing gender and sexuality in the lives of people with intellectual and/or developmental disabilities focus on deficits and disparities and offer little acknowledgment or celebration of the strengths and joy in their gender and sexual lives. For example, recent research in sexuality education has documented vulnerability to abuse and lack of sexual knowledge experienced by adults with intellectual and/or developmental disabilities (Brown & McCann, 2018; Sinclair et al., 2015). Similarly, research which has examined the lives of LGBTQ+ adults with intellectual and/or developmental disabilities has detailed the restriction, isolation, and violence they have experienced (McCann et al., 2016; Smith et al., 2022). While we do not doubt the accuracy or importance of these findings, we know that these stories of limitations and struggle do not fully represent the gender and sexual lives of people with intellectual and/or developmental disabilities. The centrality of lack and strife in current research contributes to the ongoing dominance of deficit-based perspectives of people with intellectual and/or developmental disabilities and reinforces assumptions of dependence and perceptions of pity. More importantly, these negative understandings of gender and sexualities can become internalized by people with intellectual and/or developmental disabilities. For example, in an interview with a young man with an intellectual disability, Alan heard from the participant: “Well, we talked [in sex education class] about the parts, the different parts of the male and the female. About what STDs, what STIs, what transmitted diseases are. I think we talked about everything. What sexuality is all about” (Santinele Martino, 2022b, p. 463, emphasis added).

What often remains missing in these current discussions is attention to positive aspects of gender and sexuality in the lives of disabled people, including conversations about sex, pleasure, and desires, and the creative strategies disabled people employ that demonstrate their agency. We have both been fortunate to witness the strength, creativity, and joys of people with intellectual and/or developmental disabilities within our own work, and we have caught glimpses of this represented sporadically within existing literature. For example, studies have made mention of the resourcefulness of youth with intellectual and/or developmental disabilities whose sexual expression was restricted (McClelland et al., 2012) and the resilience and self-love that LGBTQ+ adults with intellectual and/or developmental disabilities have created for themselves despite harassment and violence (Dinwoodie et al., 2020; Tallentire et al., 2020). Unfortunately, these positive expressions of gender and sexuality have rarely been centered in the design or analysis of research related to the gender and sexual lives of people with intellectual and/or developmental disabilities. We argue that engaging in gender and sexuality research should highlight strengths and joy in the lives of people with intellectual and/or developmental disabilities, and that collaboration with people with intellectual and/or developmental disabilities has the potential to acknowledge and celebrate those experiences more authentically.

In The RISE Up Project, for example, in addition to understanding the ongoing struggles within their community, the co-researchers were interested in learning about the positive support that LGBTQ+ people with intellectual and/or developmental disabilities have already received. This led to the inclusion of interview questions such as, “Is there anyone in your life who accepts you? How do you know they accept you?” In response, participants shared successes and celebrations from their lives. For example, one interview participant explained, “My mom is very supportive. She buys me everything rainbow whenever she gets the chance.” and another described, “My parents were very, very, very accepting. And they said to me, they said, ‘We don’t care what you are, as long as you’re healthy. And you’re happy.” Our findings in this area have been especially meaningful, as they provide specific and compelling models of what an accepting supporter looks like, which have practical implications for improving the lives of LGBTQ+ people with intellectual and/or developmental disabilities, and thus will be included throughout our guidebook project. Another interview question which helped us to celebrate queer joy in our work was, “What makes you feel happy or proud to be LGBTQ+?” Many participants detailed reasons they felt happy and proud as a LGBTQ+ person with intellectual and/or developmental disability, such as feeling free to be their true selves, practicing self-love, and making a difference for others. For example, one Autistic participant stated about what makes him happy to be gay, “Many different things. Just a lot more freedom and kissing lots of men.” The co-researchers suggested we include these messages in accessible resources for people with intellectual and/or developmental disabilities so they can see that being an LGBTQ+ person is not only full of struggles, and that many people are happy to be out and live their truth.

We feel that centering these perspectives is not just more authentic and valuable, but also necessary for the empowerment of inclusive research teams. When The RISE Up Project team began to analyze the themes in our research findings, the co-researchers experienced much despair and hopelessness when discussing the many struggles that participants had recounted. In fact, at one point during a research meeting the discussion of struggles became so upsetting that we decided to pivot to an analysis of themes of strengths and joy for the remainder of that meeting. Centering themes of positive support and pride meant that our team felt revitalized and motivated to continue the work of improving the lives of LGBTQ+ people with intellectual and/or developmental disabilities.

The impact of this co-learning on the researchers with university affiliation cannot be overlooked either. As the second author has articulated in a previous publication (Santinele Martino, 2022a), research at the intersections of disability, gender, and sexualities can be a transformative process:

Doing this type of work has challenged me, in positive ways, to interrogate my own (dis)comfort with talking openly about sexuality. It has (thankfully) forced me to learn about evidence-based information related to sexuality, to build a refined vocabulary, and get to a position where I could say the word “sex” with the same tone as when I say “food.” This work has undoubtedly enriched my own life as a sexual being and sexualities scholar (p. 7).

Our hope is to see more qualitative research that examines strengths and joy in the gender and sexual lives of people with intellectual and/or developmental disabilities. Some examples of this could be studies of sexual expression which include stories of participants’ pleasure and fulfillment in their sexual lives, narratives that highlight how people with intellectual and/or developmental disabilities have creatively navigated expression of their gender despite the restrictions that have been placed on them, and examples of how disabled people are “cripping” sexualities by challenging and transforming normative understandings of gender and sexuality (McRuer & Mollow, 2012; Santinele Martino & Fudge Schormans, 2018).

Conclusion

Engaging in inclusive and community-based participatory research about gender and sexualities in collaboration with people with intellectual and/or developmental disabilities creates possibilities for disrupting misunderstandings of disabled people’s sexualities and instead recognizing their ability to contribute to knowledge production. By working together with advisors and co-researchers with intellectual and/or developmental disabilities, we have found that our work has been significantly enriched, that dominant assumptions about language, ability, consent, and voice have been challenged, and that, mostly importantly, our research projects have been made more relevant and accessible to those whose lives are most affected by the issues we are exploring in our projects.

We have described how some of the core principles of community-based participatory research are reflected in our ongoing inclusive gender and sexualities research projects. In addition to future inclusive and community-based participatory gender and sexualities research, we hope to see scholarship which adds to and/or critiques the work we have presented here. For example, the perspectives of researchers with intellectual and/or developmental disabilities themselves bring great value to discussions of inclusive research approaches, and we hope to see more literature which reflects their experiences and perspectives engaging in gender and sexualities research specifically. Additionally, we have discussed the value of inclusive research approaches, but were not able to adequately address potential unintended consequences of inclusive research approaches, such as tokenism or the appropriation of inclusive approaches to maintain inequitable power structures (Bigby et al., 2014; Jordan, 2009). The potential for inclusive gender and sexualities research to reinforce dominant oppressive narratives of gender, sexuality, and disability is a necessary area of critical discussion in the pursuit of the intended purposes of inclusive and community-based participatory research.

Self-advocates have long advocated for “nothing about us, without us” in research endeavors (Charlton, 1998), and people with intellectual and/or developmental disabilities have emphasized the importance of being seen as knowers and having an opportunity to speak for themselves (McDonald et al., 2015). Having the opportunity to represent oneself and be an active partner in research, as well as being able to speak on one’s own behalf, are important aspects of intimate citizenship, which as Plummer (1995) explains, refers to our “rights to choose what we do with our bodies, our feelings, our identities, our relationships, our genders, our eroticisms and our representations” (p. 17). Inclusive and community-based participatory research can be one of the many ways in which we create space for intimate citizenship in the lives of people with intellectual and/or developmental disabilities. Our hope is that our work and others’ future inclusive research projects can help shed light on the unique experiences, challenges, and triumphs in the gender and sexual lives of disabled people, and lead to meaningful social change.

Supplemental Material

Supplemental Material - Community-Based Participatory Gender and Sexualities Research With LGBTQ+ People With Intellectual and/or Developmental Disabilities

Supplemental Material Community-Based Participatory Gender and Sexualities Research With LGBTQ+ People With Intellectual and/or Developmental Disabilities by Oscar E. Hughes and Alan Santinele Martino in International Journal of Qualitative Methods

Footnotes

Acknowledgments

We would like to thank the advisory board members of The RISE Up Project, Pauline Bosma, Francesco Hladysz, and Eleanore Johnsen, and the Queering Disability Project research team for their valuable contributions to these ongoing research projects, and for their feedback and suggestions on the themes and recommendations presented in this manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Queering Disability Project described in this article was supported by the Canadian Institutes of Health Research [grant number 472379].

ORCID iD

Oscar E. Hughes

Supplemental Material

Supplemental material for this article is available online

Notes

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