(DIS1a) Breaking Barriers I: Health, Disability, and Sexuality
Friday Jun 21 9:00 am to 10:30 am (Eastern Daylight Time)
Trottier Building - ENGTR 2110
Session Code: DIS1a
Session Format: Paper Presentations
Session Language: English
Research Cluster Affiliation: Sociology of Disability
Session Categories: In-person Session
This session will explore the intersections of sexual health, sexual education, disability and sexuality. This session will cover two literature reviews and two qualitative studies, shedding light on healthcare needs for disabled people. Presenters will navigate critical topics, such as endometriosis healthcare for individuals with intellectual disabilities, care pathways for autistic and non-autistic women in Alberta, unmet needs within sexual education for 2SLGBTQIA+ individuals with intellectual and/or developmental disabilities, and the inclusion of pleasure in sex education for queer and disabled individuals. This session invited participants to think about how to mitigate barriers, foster inclusivity, and advocate for improved healthcare and sexual education practices that address the diverse and often overlooked needs of disabled people. Tags: Disabilities, Health and Care, Sexualities
Organizers: Alan Santinele Martino, University of Calgary, Thomas Tri, University of Calgary, Eleni Moumos, University of Calgary; Chair: Thomas Tri, University of Calgary
Presentations
Alan Santinele Martino, University of Calgary; Miila Gordon, Cumming School of Medicine, University of Calgary
Endometriosis affects approximately 10% of the population worldwide, the condition occurs when cells similar to the lining of the uterus migrate outside of the reproductive tract, causing pain and inflammation (World Health Organization, 2023). Despite the prevalence of endometriosis among individuals labelled/with intellectual disability, studies routinely overlook the unique experiences of this particular social group, perpetuating systemic barriers that inhibit access to comprehensive gynecological and sexual healthcare. This paper critically examines the intersection of endometriosis and intellectual disability, highlighting significant gaps in the medical literature and proposing a paradigm shift towards a more inclusive and equitable healthcare approach. To achieve that, we conducted a systematic literature review which included 35 primary, peer-reviewed scholarly articles regarding intellectual disabilities and endometriosis. Our specific research objectives were to identify relevant studies that examine the experiences, challenges, and healthcare needs of individuals with both endometriosis and intellectual disability, and potential research gaps facing this demographic. To accomplish this, a variety of electronic databases were searched pertaining to the intersection of endometriosis and intellectual disability. Search terms included “endometriosis” and “intellectual” to ensure inclusivity, the search strategy was adapted to the specific syntax and requirements of each database. Studies implicated in this review were published in English, and included individuals from a variety of backgrounds. Our review exposes some patronizing language and attitudes toward people with disability living with endometriosis. Currently, little is known about the number of persons labelled/with intellectual disability who also live with endometriosis. Terminology commonly used in this literature tends to infantilize disabled and reinforces outdated stereotypes that de-sexualize individuals labelled/with intellectual disability. Terms, such as “mental retardation”, “girls”, and “profoundly retarded,” were some of the descriptions used to refer to people labelled/with intellectual disabilities. This is reflected not only in discussions but also in the practices concerning menstrual management for this population. Such narratives not only fail to acknowledge the sexual autonomy of individuals labelled/with intellectual disability but also obscure the pressing issues they face, including the increased risk of sexual exploitation and the challenges in accessing affirmative healthcare, which can include medication, surgery, and contradictions to hormonal treatment methods. By scrutinizing the research and clinical practices surrounding menstrual management, contraception, and sexual education, this paper reveals an urgent need for healthcare professionals to develop more effective communication strategies and to employ diagnostic tools that are sensitive to the complexities of endometriosis in intellectually disabled individuals. We argue for educational resources that incorporate anatomically accurate diagrams and terminology adapted for those with cognitive impairments. Our call to action goes beyond performative measures and seeks genuine inclusivity to enhance the healthcare of individuals with intellectual disabilities and endometriosis. Physicians, healthcare providers, caregivers, and support agencies must work together to bridge communication gaps. Healthcare providers have an important opportunity to educate disabled patients and, where applicable, caregivers about the management options for endometriosis symptoms, with a focus on enhancing communication.
Non-presenting author: Erin Brennand, Cumming School of Medicine, Department of Obstetrics and Gynecology, University of Calgary
Jordan Parks, Community Rehabilitation and Disability Studies, Department of Community Health Sciences, University of Calgary, Canada
Endometriosis, a prevalent inflammatory condition affecting women, often goes undiagnosed, contributing to substantial global health challenges. Characterized by the presence of endometrial-like tissue outside of the uterus, this condition has been linked to severe pelvic pain, fertility issues, and more. Despite its prevalence, endometriosis remains underdiagnosed, with significant diagnostic delays. Alberta in particular faces intensified challenges, marked by a limited number of fellowship-trained specialists relative to the number of affected women. This disparity raises concerns about the efficiency and accessibility of endometriosis diagnostic care pathways for women in Alberta. The impact of endometriosis extends beyond physical health, greatly affecting relationships, fertility, and sexual well-being. However, despite the growing awareness around this condition, there is limited exploration of the challenges faced by specific subgroups of women, such as those who are Autistic or generally identify as neurodivergent. Notably, gynecological providers may feel unprepared to address the unique needs of disabled women, contributing to gaps in care pathways. The objectives of this study are twofold: firstly, to identify and comprehend barriers, challenges, and differences in existing diagnostic pathways; secondly, to develop customized care pathways for both groups’ unique needs. This research intends to streamline diagnostic journeys for Albertan women, specifically Albertan Autistic women, equipping healthcare providers with the tools necessary for patient-centered care. Our primary aim is to delineate endometriosis care pathways and how they diverge for neurotypical and neurodivergent women, focusing on factors contributing to delays. Grounded in feminist disability studies and critical disability theory, this research prioritizes women’s lived experiences within healthcare, using an intersectional lens. While existing literature on diagnostic experiences of endometriosis exists, there remains a significant gap in the Canadian context. To date, only one study has focused on treatment types in Canada, without delving into the timelines and barriers encountered. Our research uniquely explores the experiences of neurodivergent/Autistic women in Alberta, adding a new dimension to current knowledge. Methods: This qualitative study in Alberta will encompass five focus groups, comprising a total of 25-30 participants, with three groups of 5-6 neurotypical women and two groups of 5-6 neurodivergent women, all surgically diagnosed with endometriosis and aged 18 or above. The focus group sessions will be conducted either in-person or via Zoom based on participant preferences, and they will be recorded and transcribed verbatim. Participants will actively engage in discussions regarding their diagnostic journeys, delineating the steps taken and associated timeframes. The study methodology involves a unique approach of obtaining participants perspectives on the duration of each step, aiming to establish an average range for various aspects of the diagnostic process. Additionally, participants will be prompted to articulate challenges faced, barriers encountered, factors that facilitated navigation, and suggestions for potential improvements. A visual representation of the diagnostic pathway will be collaboratively created during the focus group sessions. The comprehensive data collected, including responses to various questions, will be analyzed to derive meaningful insights. This work is currently in progress in the early stages of research, and the results will be ready by the expected time of the conference. This research aligns seamlessly with the session objectives, which seek to foreground the intersections between disability and sexuality, challenging the prevailing stereotypes and fostering inclusive narratives. By focusing on the experiences of neurodivergent and Autistic women navigating the complexities of endometriosis care pathways in Alberta, this contributes to the sessions’ goals of ‘cripping’ sexualities. Importantly, this work aligns with the session’s emphasis on methodological approaches to research in this area. As this work actively engages in creating visuals, such as infographics derived from focus group discussions, to visually represent endometriosis care pathways. This visual representation adds depth to this qualitative study, providing an accessible and impactful way to ‘crip’ our communication of the complexities within care pathways for women in Alberta. Overall, this work contributes to the session’s overarching goals by providing a unique perspective on the intersections of disability, gender, and health within the context of endometriosis, fostering a more inclusive dialogue on sexualized pain-related conditions as it intersects with disability, and employing innovative methodological approaches through visual representation.
Non-presenting authors: Alan Santinele Martino, University of Calgary; Erin Brennand, University of Calgary
Emily Kirby, Queen's University
While there has been some contention regarding the degree to which pleasure should be included in sexual education, there is increasing evidence that the inclusion of themes such as pleasure and desire in comprehensive sexual education has the potential to promote increased positive sexual development and sexual well-being (Mark et al., 2021). This paper reviews literature at the intersection of pleasure, sexual education, sexuality studies, and critical disability studies through a critical feminist disability studies lens. In particular, it explores the implications of exclusion of pleasure in sexual education for queer and disabled communities. While in many cases sexual education has traditionally focused on a biological model concerned with primarily—and at times exclusively—adverse outcomes of sexual relations, studies are indicating the importance of pleasure in sexuality and, in turn, the important role it plays in sexual education (Ford et al., 2019). Inclusive comprehensive sexual education is critical for queer and disabled people, with studies demonstrating the prominence of exclusion for these communities and the consequences of exclusion on their overall well-being and relationships (Tarasoff, 2021; East and Orchard, 2014; Proulx et al., 2019). Vargas and Cruz (2021) suggest that incorporating sexuality education within an environment that emphasizes teaching diversity and inclusion to learners of diverse abilities and identities fosters an inclusive understanding of sexualities. Inclusive approaches at the intersection of queerness and disability foster a unique perspective on sexuality and relationships and create the potential for improved sexual health, interpersonal relationships, and overall wellness outcomes (Human Rights Campaign 2015); this is further highlighted by Jarpe-Ratner (2020), Proulx et al. (2019), and Snapp et al. (2015). Thus, this paper examines how considering pleasure in comprehensive sexual education intervenes into the question of how to address the specific needs of queer disabled individuals in an empowering and beneficial manner. Drawing on literature from a range of disciplines, including sexuality studies, disability studies, and education, the review analyzes key themes, theoretical perspectives, and methodological approaches employed in existing research about pleasure and sex education, particularly as it relates to the experiences of queer and disabled individuals. In doing so, this review aims to bridge present gaps in knowledge regarding diverse sexual education by examining scholarly works, empirical studies, and theoretical frameworks that address the inclusion of pleasure in comprehensive sex education. This research makes a contribution towards a deeper understanding of the benefits and challenges resulting from the inclusion of pleasure in sexual education, with queer and disabled communities in mind. The review brings together discourse on often-excluded communities and advances current debates regarding pleasure, queerness, and disability in order to make space for further research into inclusive sexual education curricula. This review contributes to ongoing conversations about the intersections of pleasure, inclusivity, and sexual health in the context of education from a critical feminist sociological perspective. It offers insights for K-12 educators, policymakers, and researchers seeking to enhance the quality and relevance of sex education for diverse populations, ultimately advocating for an approach that recognizes and celebrates the diversity of sexual experiences and desires.
Alan Santinele Martino, University of Calgary; Thomas Tri, University of Calgary
2SLGBTQIA+ disabled individuals encounter significant challenges when seeking access to sexual education. Often constructed through a heteronormative and cisnormative lens, traditional sexual education tends to exclude trans and queer identities. Furthermore, societal misconceptions perpetuate the belief that disabled individuals lack romantic or sexual desires, contributing to the limited availability of inclusive sexual education. This study delves into the experiences of 2SLGBTQIA+ people labelled with intellectual and/or developmental disabilities in Alberta through semi-structured interviews to uncover the existing barriers and gaps in their sexual education. Preliminary findings from the study reveal that the sexual education experiences of participants were predominantly heteronormative, focusing on harm or negative aspects of sexuality. The intersection of queerness and disability was often neglected, resulting in an absence of comprehensive sexual education that addresses both identities separately and in tandem. Participants would recall the relationship between the lack of comprehensive sexual education and understanding one’s sexual and/or gender identity. Participants shared a sense of hesitation, fear, or denial in exploring gender and sexuality. Those who recalled upbringings in religious families or school systems were particularly distant from understandings of gender and sexuality. The study emphasizes the pressing need for sexual education to become more inclusive, representing the diversity of gender and sexual identities. Participants in the study actively sought sexual health education beyond formal educational settings, turning to the Internet and social media. These unconventional spaces provided rich and comprehensive information about sexual health, offering positive perspectives that were lacking in traditional education. Participants also shared the desire and necessity of community in understanding oneself. Queer spaces, whether online or in-person, were described as affirming and informative in exploring one’s gender and sexual identities. These spaces were also characterized as disability-friendly, whereby intersectional identities were widely accepted and embraced. The study highlights the importance of recognizing and validating the role of alternative sources in supplementing the deficiencies in mainstream sexual education. The role of family members in sexual education emerged as a significant factor in participants experiences. Recollections often revolved around the stigmatization and taboo associated with these conversations, leading to a pervasive sense of discomfort. The study sheds light on the need for open and supportive family discussions about sex and intimacy, recognizing the importance of breaking down societal taboos to create a more inclusive and accepting environment. Further, this study underscores the urgent need for sexual education to become more accessible and diverse, ensuring that it represents intersectional experiences. Sex and intimacy are integral aspects of overall well-being, and the study advocates for increased attention to this domain in educational curricula. By acknowledging and addressing the lack of attention to disability within sexual education, a more representative and supportive framework can be established. When sexual education becomes representative of diverse experiences, participants are better equipped to understand themselves and explore their romantic and sexual desires. Ultimately, this research advocates for a paradigm shift towards inclusivity, recognizing the significance of sex and intimacy as fundamental components of human well-being.
Non-presenting author: Eleni Moumos, University of Calgary