Perspective Chapter: Sexuality and Relationship Education and Advocacy by People with Disabilities through Peer Education

Abstract

For almost two decades the author has worked alongside people with disabilities to co-develop a model of sexuality education and advocacy framed by sexual rights, and modeled on a primary prevention of abuse approach. This model, Sexual Lives and Respectful Relationships, is the focus of this chapter. In this model, narratives of sexuality and relationships ‘told by’ people with disabilities are used as education and advocacy tools within a peer education program co facilitated by people with disabilities and community sexual health professionals. This chapter draws on the rich experience of this work and highlights through sharing the story of the program the importance of positioning people with disabilities as ‘experts’ in their own sexuality education as peer educators, co-developers of programs and advocates.

1. Introduction

Sexuality in the lives of people with disabilities has been problematized, managed, restricted and discouraged, in particular for people whose experience of disability relates to their cognitive engagement with the world. For them there has been a persistent view that they are ‘incapable’ of being sexual, having sexual agency, and therefore ‘deciding’ how to ‘safely’ and ‘appropriately’ express their sexual desire and identity [1]. For people whose engagement with the world also includes management of physical, sensory and communication barriers, other layers of perceived incompetence have been applied to ‘their sexuality’ based on ableist ideas of what is a ‘normal’ body [2].

Decades of self-advocacy by people with disabilities and advocacy by their allies has failed to shift these perceptions enough so the sexual lives of people with disabilities are theirs to determine, and to conduct in privacy. Still their sexual lives are mediated by policy, laws, institutions and a host of people in services, their families, and for some legal bodies. This is not the experience of all people with disabilities. Many have challenged the attitudes that underpin these perceptions by speaking out, acting out and coming out as sexual people in their own right in their own way [3, 4].

The program that is the focus of this chapter, Sexual Lives and Respectful Relationships, is a peer education program co-developed by and for people with disabilities in Australia. This program has acted as a platform for people with disabilities to speak out about their sexual rights, and to self-advocate through their stories and peer education for respectful relationships [5]. While this approach was developed almost two decades ago, peer education by people with disabilities in sexuality education programs, in particular for people with intellectual disabilities, is still not ‘the norm’ [6], despite peer education being strongly advocated for in comprehensive sexuality education for young people [7]. This chapter highlights how people with disabilities can be included as ‘experts’ in their own sexuality education and considers some of the barriers and enablers to positioning people with disabilities at the center of their sexuality education.

2. Hearing the voices of people with disabilities

‘Nothing about us without us’ [8] is the dictum of the disability rights movement. Internationally this movement has been politically active at least since the 1970s. This movement is generally understood to be representative of a broad range of people with lived experiences of disability however it has been somewhat differently formed and operates in different countries according to different socio-political contexts that relate to disability. As a grassroots movement of people with disabilities it has shaped the way disability is understood and the legislation, policy and practice that impacts on the lives of people with disabilities with the aim for equality of rights, and seeing disability rights as human rights [9].

In 2006 after decades of activism and advocacy the United Nations Convention on the Rights of Persons with Disabilities [10] was developed with unprecedented involvement of ‘civil society’-people with disabilities, in shaping this international law [11]. Disabled people’s organizations from across the world were ‘at the table’ at the UN debating and framing this Convention. This was an important symbol of the previously mentioned dictum of the disability movement ‘Nothing about us without us’. People with disabilities were present and their voices were heard. Importantly the UNCRPD Article 33 requires the continued involvement of people with disabilities in monitoring the implementation of the Convention, meaning the voices and experiences of people with disabilities continues to shape the laws, policies and programs that impact their lives.

For many people with disabilities sharing their stories is the key way they can shape the way society understands them and their lived experiences. While this approach has been enabled by modern technology and social media platforms, these resources have not always been available to people with disabilities, and are still inaccessible for many people with disabilities whose stories, particularly about their sexuality and relationship experiences are still ‘left out’ of the narrative about disability lived experience.

In Australia since the late 1990s and early 2000s partnering with people with disabilities through collaborative research has enabled people with disabilities to tell their stories of sexuality and relationships and have these stories used in training and research.

2.1 Stories of sexuality and relationships

In 2003 an anthology of stories of sexuality and relationships ‘told by’ people with intellectual disabilities was published as the appendix to a training manual [12]. Co-researchers who were people with intellectual disabilities from self-advocacy groups, and representatives from disability advocacy worked on a research advisory board engaging with the anthology of stories to develop a rights-based sexuality education program for people with intellectual disabilities, and training program for staff and families [13]. This anthology was developed using a narrative research approach—put simply researchers spent as long as it took to talk to, listen to and co-develop the person’s story with them. The researchers reflected that for many of the storytellers, this was the first time they had been in conversation about their experiences of sexuality and relationships where they were in charge of the narrative [13].

Most of the twenty-three people whose stories were published told stories about negative experiences of sexuality where their sexuality was the focus of behavior intervention because their sexual expression was seen as a ‘problem’ and ‘inappropriate’, and experiences of abuse.

Many of the story-tellers told of unsafe sexual lives because of [the] lack of information about sexuality and relationships, poor or non-existent sex education and vulnerability to sexual exploitation. Almost all of the story-tellers reported some form of sexual abuse ([13], p. 1).

Many also spoke about the importance of sexual expression in their lives, the questions they had about some aspects of sex, sexuality and relationships including consent, sexual health information and reproductive choices. The story by ‘Shaughan’ shares this young gay man’s aspirations:

I’d like to have a boyfriend and do something together. I’d like to share feelings with him. I’d like to find a caring, loving sort of man ([14], p. 58).

The overarching themes from the stories were; that people with intellectual disabilities had diverse experiences of sexuality and relationships disrupting the dominant discourse of homogeneity and inherent incapacity to be sexual, that people with intellectual disabilities were generally not seen as sexuality rights holders, people’s sexual lives where they had a sexual life was conducted in a hidden way to avoid restrictions on sexual freedoms and relationships, there was a strong gendered approach where men were seen a dangerous and women vulnerable, and while some celebrated sexuality for most there was a strong experience of loneliness and rejection [12]. This research highlighted the sexual inequality of people with disabilities in Australia and for the first time created a platform for their voices to be heard and frame policy and practice.

2.2 Building a movement: sexuality rights and peer education

The findings of the Living Safer Sexual Lives research made a number of recommendations relating to sex education for people with intellectual disabilities including a recommendation to develop a comprehensive program that used the stories as its focus and was made available to disability support staff, organizations, families and people with intellectual disability. Following this the training manual referred to earlier, which used a sexual rights framework informed by the work of UK researcher and advocate Ann Craft [14], was published in the UK and the training using the stories as the focal point, was delivered in Australia and internationally.

The set of rights articulated by Ann Craft have underpinned the body of work reported here for over two decades and have been ‘translated’ by people with disabilities into group activities to explore these rights within the stories and through people’s own experiences. The set of rights are, people with disabilities have the right; to be treated like an adult, to have information about sexual health, sex and relationships, to be sexual, to make their own decisions about relationships, to have their privacy respected, to be safe from violence and abuse and to be able to do these things without other people stopping you. The stories and the rights-based approach co-developed in this program have become synonymous with advocacy and action to change the way sexuality and relationships is understood and supported for people with intellectual disabilities in many countries. The research approach used was also referred to and used to shape inclusive research with people with intellectual disabilities [15].

Overall, this program has been recognized as an innovative way for sexuality education for people with disabilities to be co-developed using the experiences as told by people with intellectual disabilities as a springboard from which to ‘leap into’ the questions people want answered through a formal education program. Until the development of this program sexuality education where it was available for people with intellectual disabilities, was primarily biologically and health focused and delivered in didactic modes, and within behavior management programs [16]. Extending from the work of Living Safer Sexual Lives, the author in collaboration with people with disabilities who worked as co-researchers and later peer educators, developed the Sexual Lives and Respectful Relationships model. Central to this model was a peer education program recognizing that the ‘Nothing about us without us’ call needed to be answered by supporting people with disabilities to be ‘the educators’ as experts in their own experiences.

Through this work people with disabilities shaped what information would be shared in sexuality education with their peers and how it would be shared. Not surprisingly they used their experiences as self-advocates in the disability movement and in their own lives to frame this education. They used the stories, co-developed resources, developed ‘key messages’ to accompany the stories and formed collaborations with sexual health professional to co-facilitate the program.

3. Peer education: part of an ecological framework

Peer-led sex education is not a new approach in health promotion. This approach gained prominence during the HIV/AIDS crisis in the 1980s–1990s being built on the assumption that those with the lived experience of a sexual health experience were best placed to support others in their situation to gain and use important sexual health knowledge [17]. While research suggests the outcomes of peer education may not always be clear for those receiving the education, it strongly suggests there are significant benefits for the peer educators [18]. However, for people with disabilities this approach to sexuality education is still not common [19] despite the value of self-advocacy in the disability movement which is built on a peer to peer approach. It was these two converging ideas—self advocacy and peer education, that underpinned the development of the Sexual Lives and Respectful Relationships model (previously referred to as Living Safer Sexual Lives: Respectful Relationships). In addition, using a social ecological framework [17], this model recognized that people with disabilities did not need to do this work on their own, embedding in the model layers of collaboration with community professionals from the sexual health and sexual abuse prevention sectors. Additionally, a layer of ‘learning partners’ was added in recognition that all learners need people who they can get informal support from when they are accessing new, complex and sometimes difficult information that might lead to the need for broader systemic and relational changes. Figure 1 depicts this model.

Figure 1.

SL&RR model [20].

In this model each ‘layer’ is interconnected as an approach that enables the model to be implemented in local communities where people with disabilities can work as peer educators, where local sexual health and related services can be involved as co-facilitators (later called program partners), where advocates and allies of people with disabilities can be learning partners, and where participatory action research can be ‘wrapped around’ the local work to build further knowledge of the transformative effect of this work.

This model has been implemented in Australia in 7 sites with one site continually running the program for over a decade. More than 50 people with disabilities have been trained to be peer educators and 10 people with disabilities worked as co-researchers and project workers over this time to co-develop new resources, undertake research on the program, speak at conferences and train other peer educators. Despite the success of the program and in particular the use of a peer education approach, there has been a number of challenges to sustaining the model, and managing expectations and opportunities for peer educators and community networks. Where the model has been sustained it has been through embedding it in a sexual assault service which works in partnership with a self-advocacy organization with people with disabilities leading the work and shaping the direction of the program and model locally.

People with disabilities are recruited often through self-advocacy groups where issues of sexuality and relationship rights have emerged in their advocacy work, and community partners are identified through local networks of services that provide sexual health, sexual abuse prevention and related services. The learning partners are identified by the learners in the program and most often are family, advocates or support workers who make themselves available to support the learner by meeting with them outside the program and talking over what the learner has been engaging with in the program, and questions they might have about how to ‘put their learning into practice’ in their lives.

The model has undergone a number of evaluations and been the focus of a series of research projects that have interrogated barriers and enablers for implementing peer education in this model [4, 20, 21, 22]. It has also been recognized as a leading model in the provision of sex education for people with disabilities because of its use of peer education, and the benefits this approach has had not only for learners and peer educators but also for ‘non-disabled’ people who have engaged in the program as co-facilitators and network supporters [19, 20, 21, 22]. Overall, peer educators in this program have related their experiences as being overwhelmingly positive in their own lives including having an impact on their own relationships. Importantly for them, being a peer educator positions them as experts in their own sexuality and relationships and as trusted and knowledgeable people within their peer networks.

3.1 Developing and sustaining peer education in sex education with people with disabilities

3.1.1 Partnering with people with disabilities

Beginning the development of this model required a strong commitment from people with disabilities who had been advocating for decades to have their voices and experiences of sexuality and relationships acknowledged and heard. While not a peer education program the first iteration of the work that included the stories of people with disabilities as the core learning tool [12] came about because women with intellectual disabilities were asking why their sexuality rights were not getting attention in advocacy locally and globally. Two members of the co-researching group had been involved in research and policy advice on reproductive rights including advocating for changes to sterilization laws and practices that had impacted on their own lives, however their calls for sex education and accessible sexual health information were often not heard. One of these women had also been involved in a groundbreaking cervical health peer education program for women with intellectual disabilities. Through this work they recognized the power of working alongside their peers to get health information across in an accessible way using their own stories. They also had gathered important experiences of working in collaboration with a women’s health service where they were valued for their ‘expertise by experience’. A key then to developing peer education in sex education with people with disabilities is to be known by, and know people with disabilities who are current or emerging spokespeople, advocates and self-advocates and establishing collaborative relationships with them.

Researchers, teachers and other sexual health professionals need be committed to forming alliances and relationships with people with disabilities, and sustain them through collaborative work. The Sexual Lives and Respectful Relationships model did this by ensuring the research team were actively involved and engaged with people with disabilities as co-researchers, were recognized as allies of people with disabilities, and were experienced in inclusive research practices. These strong connections also ensured that the program could be responsive to the current sexuality and relationship experiences of people with disabilities and at the edge of critical research on sexuality and disability where people with disabilities could shape the direction of the program and this work more broadly. This has been particularly important in responding to the diverse experiences people with disabilities were sharing in their stories.

3.1.2 Responding to diversity

Peer educators with disabilities in sexuality and relationships programs like Sexual Lives and Respectful Relationships, are people who have a strong commitment to their sexual rights and the sexual rights of their peers. They are acutely aware of the key issues they are facing in having their sexuality rights recognized. While researchers and educators may be informed at a broad level about the key socio-political issues impacting sexuality and relationships for people with disabilities and education approaches, people whose day to day lives are affected by the intersecting experiences of ableism and sexual discrimination including homophobia, transphobia, biphobia are important collaborators in co-developing sex education programs using their lived experiences. In the Sexual Lives and Respectful Relationships program these experiences were raised when co-researchers with disabilities and peer educators in networks recognized a gap in the anthology of stories that had been used in the program. They noted that since these stories were developed much had changed in society about sexuality identity and expression, and increasingly more of their peers were identifying or wanting to identify as and express their LGBTQ identities.

This advocacy led to the development of a research project to co-develop stories with LGBTQ people with disabilities and develop an extension of the program that had a focus on the issues experienced by LGBTQ people with disabilities [23, 24]. A research partnership was formed with a disability service and research funding was received from an LGBTQ health and advocacy service to undertake this new work. Two new stories were co-developed with LGBTQ people with intellectual disabilities and a research group including peer educators from the Sexual Lives and Respectful Relationships who identified as LGBTQ co-presented the program. The new resources co-developed for the program became part of the Sexual Lives and Respectful Relationships suite of resources available to the networks running programs. Further, peer educators from the program were involved in dissemination of the research findings at conferences, and co-authored publications. This work informed the development of a larger research grant working with a disability LGBTQ self-advocacy organization and the LGBTQA health and advocacy sector.

Peer education by people with disabilities offers an important opportunity to acknowledge and respond to the sexual diversity of people with disabilities and co-develop educational resources that are meaningful to people with disabilities and their diverse sexuality and relationship experiences. The Sexual Lives and Respectful Relationships program has a large range of resources that have been co-developed with people with disabilities that are used in the program, and a train the trainer program also co-developed with peer educators. The resources are always under review and new resources developed in response to the advocacy of people with disabilities who are committed to continuing peer educator in this sexuality and relationship education program.

4. Conclusion

Co-development of sexuality education programs with people with disabilities and peer education by people with disabilities challenges the sexual ableism Michael Gill writes about [1]. Like other ‘isms’ ableism is inbuilt into society and sustained by the actions of people ‘otherwise’ privileged and positioned as ‘normal’. Sexual ableism, as Gill notes underpins much of the policy and practice that has positioned people with disabilities as ‘incompetent’ and ‘incapable’ of knowing themselves as sexual people, determining how, with whom and in which ways they are sexual, and ultimately being acknowledged as sexual citizens ‘like’ those not labeled as disabled. Peer education by people with disabilities offers the field of disability sexuality education an opportunity to challenge sexual ableism. As reflected through the work of the Australian program and research shared in this chapter, when the power of knowledge development and dissemination is shared through authentic collaborations with people with disabilities sexuality education can be accessible, meaningful and innovative.

Responding to the call of ‘Nothing about us without us’ led the author of this chapter on a twenty-year experience in sexuality education with people with disabilities whose work confirms their expertise by experience and has paved the way for them to sustain and grow their work as educators and advocates.

Acknowledgments

The work presented in this chapter began in 1999 led by Dr. Kelley Johnson. Along the way Kelley spread the enthusiasm for hearing the voices of people with disabilities through their stories and introduced people with disabilities to other researchers including the author of this chapter. Others who were central to this work are self-advocates and co-researchers Janice Slattery and Amanda Hiscoe, academic researchers at Deakin University Australia, Dr. Amie O’Shea and Monica Wellington and peer educator and co-developer of resources and training Linda Stokoe.