Exploring women’s experiences of sexuality education, sexual expression and violence: inclusive research with disabled women

Abstract

Over the last two decades there has been an increase in the use of participatory and emancipatory methodologies within disability research; centring the lived experience of disabled people. This paper explores some of the ethical and practical considerations when researching in the area of disabled women and sexuality, highlighting the pervasiveness of ableist attitudes and processes. Drawing on critical disability studies and utilising critical reflexivity, the researcher, a disabled woman, discusses some of the strengths and limitations of being an ‘insider-outsider’ researcher. The paper also presents some strategies and considerations for researchers who seek to use inclusive methods in research with and by disabled people, including the importance of language and multi-methods to facilitate and promote access and expression. If research is to be a true reflection of the community being researched, then it is vital inclusive principles are incorporated into all stages of research projects.

Points of interest

• There has been an increase in research that includes disabled people in all stages of the research process.

• This paper discusses some of the ways the researcher, a disabled woman, used inclusive research methods throughout her study focused on disabled women’s experiences of sex education, sexual expression and violence.

• The paper considers some of the strengths and challenges of insider research, and outlines ways to promote access and expression.

Keywords:

• Disability
• ableism
• inclusive research
• sexuality
• violence
• women

Disabled women and sexuality

Disability is a broad and contested term, encapsulating the barriers experienced by an individual with impairment in relation to environmental factors and disabling social processes (WHO 2011). In Australia, 18.3% of the total population are disabled including intellectual, developmental, neurodiverse, cognitive, sensory, psychosocial and physical impairments that can be congenital or acquired. Additionally, chronic illness that derives from accidents or genetic predisposition is included in the definition of disability (ABS 2015; WHO 2011). It is important to consider that disability identity differs across populations and communities as geographical, socioeconomic, sociopolitical and sociocultural factors all play a major role in how people construct their identity. Moreover, cultural perceptions and understandings of disability contribute to the under-reporting of disability due to stigma, prejudice and fear, and therefore statistics relevant to disability need to be interpreted cautiously as the data is not representative of the experience of disability (Eide and Loeb 2016).

Society problematises disability, creating social stigma which leads to the stereotyping of disabled people as inadequate, submissive and reliant on others (Gerschick 2016). Consequently, ableism and internalised ableism emerge from this problematisation. Ableism is a set of values and practises projecting bodily (aesthetic) perfection, functionality and autonomy as essential attributes necessary to be considered fully human (Campbell 2009). Internalised ableism occurs when disabled people take on these problematic and dominant social messages and is the result of experiencing prolonged ableism and oppression often impacting the psycho-social emotional wellbeing of disabled people (Campbell 2009; Liddiard 2014).

Disabled people have historically been invisible throughout time and space (Shakespeare, Gillespie-Sells, and Davies 1996) which has excluded and reduced opportunities for disabled people to form social relationships and participate in social activities. There are numerous barriers encountered by disabled people in the development of both social and sexual relationships, including attitudinal, and physical expectations of body normalcy, sexuality and gender roles (Taleporos and McCabe 2003; Taub, McLorg, and Bartnick 2009). When disabled people, particularly disabled women, experience these barriers such exclusion can lead to negative implications for their mental health, wellbeing, as well as their sense of social worth and sexual esteem (Taleporos and McCabe 2003; Taub, McLorg, and Bartnick 2009; Tough, Siegrist, and Fekete 2017).

Sexuality is a central component of being human. It encompasses sex, sexual orientation, gender identities and roles, eroticism, pleasure, intimacy and reproduction (WHO 2006). However, disabled women are often denied sexual justice, pleasure and expression and are often infantilised, considered incapable, ‘asexual’ and passive whilst paradoxically being labelled as ‘hypersexual’ and even ‘fetishized’ (Gill 2015; Liddiard 2018). This type of ableism, referred to as sexual ableism, dictates that sexuality is the privileged arena of those deemed to qualify as having ‘ability, intellect, morality, physicality, appearance, age, race, social acceptability and gender conformity’ (Gill 2015, 3). In other words, these standards are based on attractiveness, functionality, performativity and reproductivity (Butler 1993; Butler 1999; Erickson 2007; Liddiard 2018; Parsons, Reichl, and Pedersen 2017; Saxton 2018; Tepper 2000).

Sexuality education

Sexuality education is a crucial component of human development for all people, including disabled women. Sexuality education needs to be both comprehensive and all-encompassing to ensure it is reflective of all human beings across their lifespan (Jaramillo Ruiz 2017; United Nations 2006; WHO 2006). Historically, in an Australian context, the term ‘sex education’ has been used, however there has been a shift towards ‘sexuality education’ as it emphasises a more inclusive and holistic approach to sexuality. Sexuality education incorporates key concepts of human development, relationships, personal skills, sexual behaviour, sexual health and society and culture (SIECUS 2004, 15). These key concepts inform holistic and inclusive sexuality education. Firstly, human development reinforces the biopsychosocial interconnectedness. Secondly, relationships play a significant role throughout the life course. Thirdly, the development of personal skills includes the recognition of both personal and interpersonal skills as key to developing healthy sexuality. Fourthly, sexual behaviour is the understanding that sexual expression is diverse and needs to be approached inclusively. Fifthly, sexual health requires information that is accessible, accurate and appropriate which requires a whole-of-community response (East and Orchard 2014). The final key concept emphasises the role social and cultural influences play on sexuality and sexual expression (SIECUS 2004). However, the topic of sexuality education has excluded disabled people, particularly women and girls. Sexuality education is seen as a lower priority, as well as a high-risk topic, given the perceived complexity of disability and the needs of disabled people (Finger 1992; Shakespeare, Gillespie-Sells, and Davies 1996). When sexuality education is provided for disabled people, especially women, it is done from a heteronormative perspective, with an emphasis on reproduction and functionality (Bahner 2018). Disabled people need access to appropriate language in order to develop a sexual voice and contribute to the formation of a positive body image, body autonomy and an understanding of sexual health (Martin et al. 2011). There is a distinct gendered approach to sexuality education and anatomical language as there is a higher prevalence of using passive and infantilised terms when referring to female genitalia creating misinformation and body stigma which generally begins in early childhood socialisation (Martin et al. 2011). Some studies highlight management strategies implemented by parents such as limiting the spaces where topics relevant to sexuality can be discussed, i.e. private vs public spaces; the use of infantalised language, originated with the child and in turn endorsed by parents and carers through the continued use of those terms. Some of these terms include (but are not limited to) ‘pee-pa’, ‘teetee’, ‘flower’ and ‘private parts’ (Martin et al. 2011, 425–426). Again, by not using the anatomically correct language, it reinforces the ‘taboo’ of sexuality in the public sphere. Although these studies focus on women and girls without disability, the concepts are transferrable to women and girls with disability. Moreover, the exclusion of disabled women and girls in these studies highlight the invisibility of the topic of sexuality of women and girls (Bahner 2018; Sanders 2010).

Disabled women and violence

While disabled women experience violence in familial or domestic settings similar to that of non-disabled women, disabled women experience double-discrimination or intersectional discrimination on the basis of the duality of gender and disability, thus increasing their vulnerability to experiencing poorer health outcomes, social isolation and less access to support, both formal and informal (Crenshaw 1991; Dowse, Frohmader, and Didi 2016; Deegan and Brooks 2018a, 2018b). Other unique forms of violence experienced by disabled women include medication being withheld, removing mobility aides or communication devices that assists independence, denial of personal care assistance and prohibiting medical intervention (Dutta 2015). Conversely, medical intervention in the form of forced sterilisation is another form of violence placing pressure on intimate relationships as the opportunity to ‘naturally’ conceive has been removed. Thus, the choice, control and autonomy of disabled women has been eliminated (Daniels 2019; Rock 1996).

Rich (2014) indicates disabled women may cease attending or receiving treatment to minimise the caring responsibilities for their intimate partner. Consequently, this can increase dependency in the long term due to exacerbation and onset of primary and secondary conditions. In turn, increasing caring needs rather than minimising the caring responsibilities. Moreover, disabled women who experience violence and abuse attribute it primarily to their disability and the pressure that this places on intimate, familial relationships. This results in internalised (sexual) ableism and victimisation, with a feeling of failure on the part of disabled women as they are unable to meet the physical and sexual requirements and expectations of their intimate partner (Hassouneh-Phillips and McNeff 2005; Rich 2014). Power dynamics in intimate relationships where necessitated personal care is provided by an intimate partner can be a source of relationship tension, limiting opportunities for sexual intimacy and exploration of sexual-self, impinging on the private time and space required for sexual expression (Nosek et al. 2001a, 2001b; Liddiard 2018; Shakespeare 2017). Similarly, expressing one’s sexuality and intimacy can be impacted when the primary personal carer is a cohabiting family member (Owens and de Than 2015).

Researching women, disability and sexuality: the study

Informed by a critical disability framing (Meekosha and Shuttleworth 2009; Goodley et al. 2019) which considers the nuance of impairment and disablement of social structures and processes, this doctoral study used an emancipatory methodology and inclusive methods to explore the experiences of disabled women’s access to sexuality education, experiences of sexual violence and sexual expression (Stone and Priestley 1996). Nineteen disabled women with physical impairment participated in this multi-methods study, including semi-structured interviews; selecting and analysing ‘card identifiers’ in relation to their sexuality; and photographs (photovoice) taken by the participants.

The researcher used critical reflexive practices, such as supervision and recording reflections using a voice diary, as ‘a means of documenting and examining the complex, contentious and contradictory nature of [research]… work’ (Barton 2005, 319).

Being an insider-outsider researcher

The research process was both complimented and complicated by the researcher’s insider-outsider status. From people questioning the ‘objectivity’ of the researcher as being too close to the topics of disability, sexuality and violence to highlighting the traumatic nature of the research that could have a significant impact on the wellbeing of the researcher. The researcher identifies as a proud disabled woman – with cerebral palsy – impacting on her mobility and fine motor skills and had to grapple with ableist attitudes and processes throughout the research project. She recognises her insider status as a disabled woman who has lived experience of social inequities and oppression. These lived experiences of disability discrimination aided the process of planning this research project within a ‘taken for granted’ and entrenched ableist research environment, motivating the researcher to adopt inclusive and accessible research practises (Lester and Nusbaum 2018, 3; Ollerton 2012). Furthermore, the insider status provided a platform to assist rapport building between the researcher and the women. Additionally, the privilege of being a disability advocate, exceeding 18-years-experience, provided the opportunity to see the extent of discrimination, exclusion and violence experienced by disabled people, specifically disabled women. This in turn gave the researcher the opportunity to develop her skills around navigating systems, addressing social inequities and oppression and using her advocacy skills to facilitate inclusion, especially during the planning phase. Therefore, the researcher’s insider status contributed to gathering data that is rich, authentic and in-depth. (Dwyer and Buckle 2009; Hewitt-Taylor 2002; Kanuha 2000; van Heugten 2004).

When conducting social research, researchers can occupy the ‘in-between space’ of being both insiders and outsiders and this was the case during this research project (Dwyer and Buckle 2009; Hayfield and Huxley 2015; Kanuha 2000; van Heugten 2004). When interviewing the women, some of the women assumed the researcher understood their experiences of sexuality, disability and violence as a disabled woman. This was reflected in the women’s responses with ‘you know what I mean’. To avoid such assumptions, the researcher sought clarification by further probing and seeking elaboration (Hayfield and Huxley 2015; Kanuha 2000; van Heugten 2004). The researcher’s outsider status was magnified when the women were speaking about the nature of the violence they had experienced, as she had not experienced the same level/nature of disability discrimination, physical or sexual violence. Occupying the ‘space in between’ gave the researcher power by having access to academic resources and opportunities such as conferences which are not readily available/accessible to people outside of academia (Dwyer and Buckle 2009; Hayfield and Huxley 2015). External factors such as following university guidelines and meeting deadlines played a role in unequal power distribution as the researcher was obliged to manage these expectations. This limited participants’ level of engagement and control in the research process (Balbale et al. 2017; Newman 2010). For example, the research flyer, the participant information sheet (PIS) and the interview schedules were developed by the researcher without consultation from disabled women as these documents needed to be produced in order to obtain ethics approval and before recruitment could occur. Moreover, data analysis took place without input from the women due to the strict guidelines and timelines set by the University. This meant the researcher had ultimate control and power over the interpretation and representation of the women’s stories (Dwyer and Buckle 2009; Hayfield and Huxley 2015). However, by having an awareness of both her insider/outsider status, the researcher understood the benefit of sharing some of her personal and professional lived experiences which aided in breaking down and minimising the researcher/researched positionality and possible power imbalances (Hayfield and Huxley 2015; Merriam et al. 2001).

Inclusive research design

The researcher drew on her own experience as a disabled woman with physical impairment to integrate inclusive research design practises, and some of these strategies are outlined below.

Once women expressed an interest in participating in the research, they were sent an invitation to attend an interview on the University’s campus. This invitation included a campus map, and captioned photo directions were developed and sent to the women. The researcher used her personal insight and embodied experience of negotiating the vastness of the campus grounds to inform the captioned photo directions (van Heugten 2004). The researcher and an assistant created the map and captioned photo directions by walking the route, taking photographs of identifying landmarks, starting at the entrance of the campus to the researcher’s office. This was to ensure women’s ease of access when navigating the campus.

The first phase of data collection was a semi-structured interview involving questions relating to the lives of disabled women and how they obtained sexuality education; constructed their sexual identity; expressed and experienced their sexuality and whether they experienced violence and negative risk taking. The first question posed at interview, ‘Can you describe to me the language that you use to refer to yourself?’ caused the most controversy, not for the women participating in the research project, but rather the supervisory panel at the time of developing the interview schedule. The supervisory panel felt the question was too confronting to be the first question. However, as a disabled woman, the researcher understood the power of language and did not want to offend the women by using language that was potentially disempowering or misrepresentative of the women’s identity. The importance of the power of language was reinforced even before the interview commenced. One woman highlighted the importance of language by responding ‘I’m a disabled person – if I have to explain that I am a person first and foremost before you want to talk to me, then you are not worth talking to’. This reflects how individual identity is; some women wanted to emphasise their identity (identity-first language) whereas others emphasised their personhood (person-first language).

Identity is a topic of debate within the disability community (Siebers 2011). Often identities are automatically ascribed rather than being an aspect of choice and autonomy exercised by disabled people. To reinstate the concept of choice and autonomy for the women participants, the researcher created card identifiers, originally developed by Carlone (2012) to highlight valuable traits. Kemmery and Compton (2014) adapted the Carlone approach to analyse identity within the d/Deaf or hard of hearing community. Similarly, the researcher was motivated to adapt this data collection tool to provide women with physical disability the opportunity to choose and emphasise important aspects of their identity. An overarching framework of social identifiers commonly used and recognised within wider society were made available so the women could choose their preferred identities. These identity groups included: gender, disability identity, sexual orientation, relationship status, ethnicity/cultural identity and religion/spirituality. In addition, blank cards were made available so the women could add their own significant identities.

The card identifiers were designed with the principles of accessibility, useability and reusability in mind. This involved laminating the cards, using white background with black writing, as well as having them cut to a ‘playing-card size’. This was informed by the researcher’s own experience as a disabled woman with dexterity challenges. Three sets were produced to be able to send a separate set to participants who were limited to participate remotely as well as having spare copies in the event any cards got lost.

The second phase involved asking the women to take four photographs that were reflective of their sexual identity, sexual expression and womanhood. Photovoice enabled the women to take control of how their identity and experiences were presented (Harper 2002; Phelan and Kinsella 2011). A photographic assistant was available to support women participate in the photo voice phase of the research if needed. The four photographs taken by each participant in phase two provided the critical material for the third phase interviews. According to Wang et al. (1998, 80), photovoice enables people to ‘reflect on photographs that mirror the everyday social and political realities that influence their lives’. Using art, i.e. photography, enables marginalised populations to share difficult, traumatic or otherwise controversial topics in new and creative ways (Clark and Morriss 2015; Sinding, Warren, and Paton 2014). Using art as an expressive outlet can also result in the women deepening their own understanding of their sexual identity and lived experiences, bringing their agency and resilience to the forefront rather than their vulnerabilities (Clark and Morriss 2015). Additionally, photovoice enabled the women to author and own their stories while also providing the opportunity for audiences to see and relate to the women’s humanity and in the process transforming their understanding and assumptions through the women’s images (Clark and Morriss 2015). Therefore, art becomes a tool of activism, a form of resistance and a catalyst for social change (Clark and Morriss 2015).

The third phase was a semi-structured interview informed by the SHOWeD model, recognising the value of control and autonomy of the women, their lived experience and the emotional, social and cultural space they occupy (Payne et al. 2016; Wang and Burris 1997; Wang et al. 2004). The acronym ‘SHOWeD’ is a series of prompting questions. The first question focusses on ‘what can be Seen in the photograph’. The second question asks people to consider ‘what is Happening in the photograph’. The third question encourages people to consider the relevance to ‘Our lives’ as a community. The fourth question considers ‘Why they took the photograph’ as an illustration of the problem or strength and the last question asks people ‘what can be Done’ (Wang et al. 2004). The researcher’s motivation was to centre the women’s agency and create a platform for the women to be heard and contribute to policies and practices that are relevant to their lives. At this phase, the women’s messages through the photographs, both explicit and implicit, provided a site of learning, shaping the researcher’s understanding of the women’s realities and lived experiences (Clark and Morriss 2015). Moreover, this phase provided each participant with an opportunity to discuss issues, themes and meanings that arose from their photographs by actively engaging in ‘action-oriented analysis’ through their storytelling (Wang 1999, 188).

The purpose of the SHOWeD model is to identify the weaknesses and strengths prevalent in marginalised communities, opening up critical discussion by recognising people with lived experiences as the experts, in turn developing opportunities to bring about social change (Wang et al. 1998). This model recognises and values the women’s agency and the emotional, social and cultural space they occupy (Payne et al. 2016; Wang and Burris 1997; Wang et al. 2004).

Conclusion

This research has illustrated the importance of adopting an inclusive research approach when researching the experiences of disabled women. Such an approach repositions women from objects or subjects of research to one where women have agency over the entire research process and lived experienced is both centred and valued.

This study has also provided some practical and ethical considerations for ‘accessible’ research design in an attempt to disrupt research processes that are often disabling for disabled researchers and participants.

Finally, the study draws attention to disabled women’s experiences of sexuality education, sexual expression and experiences and advocates for accessible sexuality education as a site of sexual justice for disabled women.

Disclosure statement

No potential conflict of interest was reported by the authors.