Sexual citizenship through resistance: a movement that centers disabled women’s voices

Abstract

This research examines the discourses that shape disabled women’s sexual subjectivity. I wanted to see how disabled women’s understanding of themselves as sexual is socially influenced. I held a focus group and individually interviewed five self-identified physically disabled women about their sexual lives. They shared detailed stories of personal experiences and societal influences. The main social influences that were present in the women’s stories were ableism, sexism, and resistance; the focus of this article is resistance. Resistance discourses challenge mainstream notions of disability and sexuality and combat the oppression that ableism and sexism can create. It is important work to highlight these resistance narratives; they are often overlooked in society. Diverse social understandings of disability and sexuality are needed, and it is important that they come from disabled people. This research seeks to make space for disabled perspectives in the interest of sexual inclusivity and sexual citizenship for disabled women.

Points of interest

• This research explores the social influences that affect the sexual lives of physically disabled women.

• Disability and sexuality are social constructs, and disabled women’s sexuality is often misunderstood, misrepresented, or disregarded altogether.

• Disabled women are sexual beings and their rights to sexual citizenship are important to consider.

• The social influence of resistance is a significant finding in this research; it encompasses sexual empowerment, liberation, pride, solidarity, and reclamation – it is opposition to oppression.

• Resistance plays a vital role in shaping disabled women’s sexual lives.

Keywords:

• Resistance
• disabled women
• disability and sexuality
• sexual citizenship
• disability justice
• feminist critical disability studies

Introduction

This research is focused in the area of disability and sexuality. More specifically, it is focused on the ways that socio-cultural discourses position disabled women in relation to sexuality and, in turn, shape disabled women’s understanding of themselves as sexual. Disabled women are often positioned in society in ways that other their existence. This othering is marginalizing, oppressive, and creates barriers on many levels – particularly in the realm of social impositions and expectations placed on disabled women’s bodies and sexuality (Garland-Thomson 1997; Linton 1998a, 2007; Shildrick 2009). While this research found that ableism and sexism are also significant influences on the sexual lives of disabled women, this article specifically focuses on the influence that resistance discourses have. Resistance discourses challenge oppression and can help lead movements toward a more inclusive framework around disability and sexuality (Erevelles 2011; McRuer 2018). This article supports that claim through examples gathered from the personal experiences of disabled women with respect to their sexuality. The findings help to re-shape social understandings of disability and sexuality and promote sexual citizenship for disabled women.

This research is important because it centers the voices of disabled women in a foreground not often occupied by them. This is not because they have nothing of value to add, but because the value of what they can add has been ignored. The socially constructed narratives surrounding disability and sexuality are rarely informed by disabled perspectives. Disabled women’s stories have been told for them by society, but these appropriated stories are fallacies built on biased and limited expectations and understandings of disability and sexuality. This is a disservice to everyone, not only disabled women. Rosemarie Garland-Thomson (1997) uses the term contingently non-disabled to make this point when she states that everyone will likely move through disability experiences at some point in their lifetime and, therefore, the cultural understandings that go along with disability are important for everyone to consider.

This is an empowerment piece; it is sex positive. It is a collection of voices and perspectives from the lived experiences of disabled women both witnessing and contributing to resistance narratives. It is pride, solidarity, and reclamation – a pushing back against oppression. I want to give space to the topic because it has been overlooked and disabled women’s voices are missing in conversations about sexuality. This research is about centering the voices of the women who took part in this research; it represents them and their experiences. This work and what it offers exists because of their courage and dedication.

Research process

The literature in context

Literature in the field of disability is varied, but literature about disabled women is much more narrow – and narrower still when sexuality is the focus. Disability and sexuality scholarship tends to be rooted almost exclusively within a remedial, medicalized perception of disabled women’s bodies that focuses on sexual function and dysfunction as it relates to a non-disabled standard (Hocaloski et al. 2016; Smith et al. 2015; Wiegerink et al. 2011). Further, there is extensive evidence of an ableist culture at work that subjugates disabled women, ignores their sexual citizenship, and stigmatizes their sexual expression and sexual pleasure (Bahner 2012, 2020; Beckwith and Yau 2013; Drummond and Brotman 2014; Garland-Thomson 1997; Jungels and Bender 2015; Linton 2007).

The medical model of disability is one of the most dominant approaches to understanding disability, creating a narrative that positions disability as a personal flaw or failure in need of correcting (Shakespeare 2014; Wilkerson 2002). Ableism springs from this model and Campbell (2008) suggests that ableism is a discriminatory set of beliefs and processes that position the self and the body as less-than; removed from the standards set by a dominant, privileged society. Conversely, the social model of disability focuses on the organizing structures and practices of society that position people as disabled rather than on disability as a personal fault or flaw. It effectively re-frames disability as constructed discrimination as opposed to an inherent personal shortcoming (Shakespeare 2014). The social model of disability was recognized as groundbreaking in the 1980s/1990s and still offers a valuable perspective with respect to disability; that said, it has been critiqued for its removal of the personal, bodily experience of disability (Linton 2007; Shakespeare 2014).

The literature available in the area of disability and sexuality is clear: the sexual lives of disabled women are actively dismissed and/or stigmatized (Addlakha, Price, and Heidari 2017; Esmail et al. 2010; Esmail, Munro, and Gibson 2007; Fritz, Dillaway, and Lysack 2015; Parker and Yau 2012; Parsons, Reichl, and Pedersen 2017; Payne et al. 2016; Zitzelsberger 2005). They are left to navigate heaps of emotional labour in their sexual relationships; laden with having their own needs disregarded and needing to restrain their emotions for fear of social repercussions (Batty, McGrath, and Reavey 2014; Beckwith and Yau 2013; Goodley 2017; Liddiard 2014, 2018; Linton 2007; Mona et al. 2009; Odell 2010; Scully 2010). Further, representations of disabled women as sexual beings are skewed, appropriated, or non-existent in many forms of media (Liddiard 2018; Linton 2007; Shildrick 2009; Trace 2014). Rarely are accurate portrayals of disabled women’s sexuality brought to light. Systemic structures such as political, economic, and cultural constructs are forms of representation, and one’s subjectivity is largely informed by interactions and relationships within those structures (Goodley 2013, 2017). Representation is not just media; it is socio-cultural practice that takes shape in many ways and informs personal and social understandings. How disability is represented shapes how it is understood.

Re-imagining disability is a notion put forth by many scholars; they promote a need to expose and interrogate the privilege and power that sustains a non-disabled social standard (Campbell 2008; Garland-Thomson 1997, 2002; Linton 1998a, 2005). Linton (1998a, 2005) calls for an examination of the politics behind the social positioning of dominant society and an analysis of representations that reinforce that dominance. Re-imagining disability involves working toward ending ableist discrimination and formulating a logic that allows people to claim the identity of disabled without having to conceive of it as a diminishment of the self (Garland-Thomson 2005a; Mingus 2011). This call to re-imagine springs from the early work of Crenshaw (1991), a scholar and activist who developed the notion of intersectionality. She interrogated how intersecting identities relate to power and oppression dynamics from the perspective of her racialized and gendered experiences as a black woman (Crenshaw 1991). This work has been followed-up and expanded since then to encompass many forms of intersecting identities including racialized, gendered, disabled, queer, and trans experiences of power and oppression (Bahner 2020; Brown et al. 2019; Erevelles 2011; Mingus 2011; Piepzna-Samarasinha 2018).

Re-imagining disability and sexuality in intersectional ways is necessary for sexual citizenship and sexual citizenship is necessary for disability justice. Shakespeare and colleagues’ (1996) foundational disability studies work in the area of sexual citizenship dates back over twenty years and is defined in terms of sexual pleasure, desire, expression, and rights; this is no less relevant today. Sexual citizenship is a way of being in the world that promotes inclusivity, choice, and rights relating to sexuality and disability; it is a social justice issue (Bahner 2020; Liddiard 2018; Shakespeare, Davies, and Gillespie-Sells 1996, Shildrick 2013). Its major barrier is social discrimination (Shakespeare, Davies, and Gillespie-Sells 1996). It is a term that effectively names what it is to have access to sexual rights while also being a site charged with social justice movements that contest the fact that sexual citizenship is freely given to some and outright denied to others (Bahner 2020; Liddiard 2018; Richardson 2017; Shakespeare, Davies, and Gillespie-Sells 1996, Shildrick 2013).

The concept of disability justice follows from intersectional works and is a movement created by people of colour who hold multiple marginalized identities including disabled women and LGBTQ + people (Brown et al. 2019; Erevelles 2011; Mingus 2011; Piepzna-Samarasinha 2018; Sins Invalid 2019). Disability justice moves beyond issues of social barriers and access, pushing for an understanding of how ableism affects disabled and nondisabled movements for justice. It draws connections between systems of oppression and has the power to challenge our thinking about disability, change the way we understand social ordering, and revolutionize how we fight for social change (Brown et al. 2019; Erevelles 2011; Mingus 2011; Piepzna-Samarasinha 2018; Sins Invalid 2019). Disability justice brings disabled bodies back into social conversations in a complex and intersectional way (Brown et al. 2019; Mingus 2011; Piepzna-Samarasinha 2018; Sins Invalid 2019). Mingus (2011) challenges researchers, organizers, and society in general to think of disability with an understanding of disability justice, moving away from an equality-based model of sameness to a model of disability that embraces difference, confronts privilege, and challenges what is considered ‘normal’. As she states, ‘We don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them’ (para. 5).

Methodology

This research framework is qualitative. It began with a two-fold research question: ‘What are the discourses that shape disabled women’s narratives of sexuality and their sexual lives?’ And, ‘how do these discourses shape the women’s sexual subjectivity?’ Findings were based on focus group data as well as individual narrative interviews with five self-identified physically disabled women. Data was collected throughout the fall of 2017 and into early 2018. Three women took part in the focus group as it was the first step in data collection; the remaining two women had not yet come forward to participate. It was not a requirement of the research that a participant must be part of the focus group.

The focus group was unstructured and interactive. Focus groups serve to draw out salient concerns and perspectives as participants explore the topic together at their own pace, identifying their own key points (Richards and Morse 2013). I used a narrative approach in the collection of interviews. Personal accounts, stories, narratives are gathered by a researcher and interpretively analyzed to understand the socio-cultural influences and meaning behind them (Gergen 2015; Malhotra and Rowe 2014; Polkinghorne 2007; Riessman 2008). The interviews were semi-structured, consisting of pre-developed questions that acted as a narrative guide. These questions were open-ended and constructed with the assistance of an advisory board of disabled women to ensure the questions were formatted with insight from disabled perspectives. The questions were ordered in a way to elicit a participant’s life story within the context of the topic of disability and sexuality, but not so restrictive that they would limit any sharing or discovery (Richards and Morse 2013).

Five women consented to and took part in the research. They were recruited through a local disability organization using a recruitment letter. These women are represented by chosen pseudonyms: Gabbi, We, Wilma, Arianna, and Gail. They ranged in age from 35-64. Their physical disabilities varied from visible to invisible, sometimes a combination of both, and this included chronic illness. While all the women lived in the same geographic area at the time of their participation, they come from different racial, socio-economic, and socio-cultural backgrounds. All data was audio recorded, transcribed, and coded by me. Colour-coding of major discourses was used to allow for easier analysis. I conducted multiple read-throughs of the data to comprehensively consider the substance and context of each piece. Narrative work requires that the researcher be able to extract topics through categorization while also ensuring that the story be seen as a whole (Richards and Morse 2013). I wanted to make sure I deeply analyzed the data but did not lose sight of the stories and voices in the process. Member checking was conducted with the women during the analysis portion of this research to make sure their perspectives were represented accurately. The findings of this research are not generalizable given the qualitative methods used and the number of participants. However, it was never my intention for this work to be generalizable; generalizability is not important or necessary to qualitative research (Richards and Morse 2013). These stories are rich and complex. Even though they share themes, they are each unique and inherently valuable because of that.

The theoretical focus of this research is social constructionism through a feminist critical disability studies lens. My interest in disability studies followed from my interest in feminist studies; both are critical theories that seek to expose and interrogate social structures. However, these theories can also diverge. Disability studies challenges feminist theories for lacking meaningful inclusion of disability perspectives and overlooking the sexual rights of disabled women (Campbell 2008, 2009; Garland-Thomson 1997, 2005b, 2002; Kafer 2013; Linton 1998a, 1998b, 2005, 2007; Mingus 2011; Samuels 2003; Wendell 2001, 2010; Shildrick 2007, 2009). Critical disability studies can profoundly deepen feminist theories; the two are inextricably entangled. Disability, like gender, is a concept that pervades all aspects of culture. Understanding how disability operates as an identity category and a cultural and political concept and practice enhances how we understand what it is to be human (Garland-Thomson 2002). Disability adds depth to feminism by pushing the boundaries around how disability is conceptualized – thus, feminist critical disability studies (Erevelles 2011; Garland-Thomson 2002, 2005a).

Theorizing from a feminist critical disability studies perspective and partnering with the women in this research has carved out more space in feminism for disability perspectives. We’ve created work that is emancipatory and transformative – moving toward a more unrestrained, intersectional, and socially just understanding of disability and sexuality. An emancipatory paradigm consists of research that is partnered; research that seeks to expose and change disabling structures to extend the control disabled people have over their lives. Transformative research aims for social justice through solidarity among marginalized groups and seeks to challenge and change biased understandings (Mertens, Sullivan, and Stace 2011).

Social constructionism aligns well here as many scholars in the field of disability studies advance the view that disability is socially constructed (Campbell 2008, 2009; Erevelles 2011; Garland-Thomson 1997, 2002, 2005a, 2002; Kafer 2013; Linton 1998a, 2005, 2007; Samuels 2003; Wendell 2001, 2010; Shildrick 2007, 2009). It is also tied to a narrative approach that is rooted in the thought that knowledge is constructed through language and storytelling (Riessman 2008). Social constructionism sees reality as shaped or constructed by social relationships, interactions, and language; when people talk, the world gets created (Burr 2015; Denzin and Lincoln 2017; Gergen 2015; Gergen and Gergen 2003; Lincoln, Lynham, and Guba 2011). This process of social agreement is fluid; there is no single discoverable truth (Burr 2015; Denzin 2016; Gergen 2015). Socio-cultural discourses can both constrain and open up ways of thinking (Berg 2009). There is the potential of people’s narratives to subvert and transform mainstream thought by liberating voices otherwise silenced or ignored (Malhotra and Rowe 2014). This means the world can be re-created; we can re-imagine what disability and sexuality means in our society and disability narratives are an invaluable site for this resistance and change. How disability is talked about by society shapes and positions what is understood about it. Disability is a story we tell about bodies; it is pliable and can change over time and across place (Garland-Thomson 2005b). Feminist critical disability studies rooted in social constructionism can help reveal how the storied quality of disability invents and reinvents the world we share; it can expose and criticize the processes by which disability is produced and reproduced within society to challenge and change collective representations of disability and sexuality (Garland-Thomson 2005b; Linton 1998b). The methodology of this research is resistance in theoretical form.

Findings

While ableism and sexism are also prominent discourses in the findings of this research, this article focuses on the significance of resistance discourses. I chose to focus specifically on resistance discourses because they are not well examined; highlighting their influence has important implications for disabled women. Although I acknowledge the enmeshment of socio-cultural discourses and I am cognizant of the intersectionality at play in disabled women’s lives, focusing on resistance discourses centers perspectives that are often overlooked and extends social conversations around rights to sexual citizenship.

The focus group

The women claimed their right to resist against the oppressive social scripts that attempt to dictate their sexuality. Referencing her fight for rights to sexual expression and pleasure, Gabbi stated, ‘Even though sometimes it’s like tiring… it’s still definitely worth fighting for – definitely worth fighting for, for sure’. Feeling empowered and autonomous in their sexual lives was clear among all the women; the women claimed their right to voice. We displayed this empowerment and autonomy in terms of claiming her right to have her needs and pleasure considered in sexual encounters: ‘As women now, we can own and know what we want in the bedroom…it’s not just about him getting his needs met. It’s about us getting our needs met’. Wilma also expressed feelings of empowerment in her sexual life and how these feelings led to personal sexual exploration: ‘Now that I’m older, I feel like I can explore my personal sexuality more because I know what really helps me, makes me excited, and so I can explore that’.

This empowerment and autonomy led to the women feeling comfortable and confident in their sexual lives as they grew older. Wilma expressed her confidence: ‘I feel more comfortable exploring my sexuality… I feel more comfortable with my abilities to do certain things… we can explore more what can be done… I think that helps raise your confidence and your ability to be sexual’. We pointed to the confidence and comfort in this shifting framework of resistance discourses, highlighting our group discussion: ‘…just to be able to embrace this today. To sit around having this conversation and not to be frowned upon’.

The women linked this confidence and comfort, in part, to their own life course and maturity and to increasingly inclusive media in recent years. While the women spoke to the limits they experienced as a result of oppressive discourses, they recognized more recent promising social shifts. Gabbi explained: ‘It’s kind of helped because society is saying that there are more options…So, at least I don’t feel like I’m totally singled out now if I can’t do something’. Wilma supported this point stating, ‘I feel that before media kind of said people with disabilities can’t be sexual, but now I think media is broadening the scope of who is sexual and that helps’. These media influences were linked to wider social movements such as the women’s movement in Canada. We mentioned the influence of feminism, ‘I think a lot of things have changed for the good and especially with women’s lib and how we can fight for what our own rights are and stuff like that’. Gabbi raised the point about some barriers being dissolved, ‘Yeah, you don’t feel like there’s any limits in some ways’. We followed this comment up by saying, ‘We can fly!’

Overall, the women spoke about finding their voices in a shifting social world where they felt the space to claim their rights and explore their sexuality in an increasingly comfortable and confident way. They spoke about the importance of this social shift to their individual interactions. For example, all the women underscored the importance of honest, open communication with supportive sexual partners. For this to happen, there must be a supportive social influence around disability and sexuality such that people are open to understanding different concepts of what it means to be sexual, what sex can look like, and who has rights to pleasure and sexual citizenship.

I was surprised by one point the women made about discourses of resistance. They were, in part, overwhelmed by discourses of resistance because of perceived pressures placed on them. They felt that an outcome of resistance shifts was a new pressure to be more sexual, or sexual in a different way, due to less restrictions. The women noted that more progressive discourses are best, but that there can still be pressure added through a set of ideals and expectations to meet. Figuring out where one fits within that progressive movement can be a challenge. Trying to make sense of a host of new information in terms of likes, dislikes, wants, and needs was sometimes overwhelming for the women. Gabbi stated, ‘I feel like now I’m having to kind of catch up…what do I have to do with my sexuality now? Do I have to add something to it, do I have to change something?’ She spoke of discourses in general, even more inclusive ones as, ‘that outside pressure’. We agreed by saying, ‘You feel like you have to kick it up a notch! What are we gonna do now? We gotta up it’. However, the participants found the beneficial aspects of resistance discourses to outweigh the pressures they felt.

Gabbi

Gabbi was very vocal about the influence of resistance discourses on disability and sexuality. She spoke about a shift toward confidence and comfort in herself as a disabled woman but noted that this did not come easy: ‘Definitely now I do see myself as a sexual person. I enjoy sex, all that sorta stuff, but it took a long road to get here’. She spoke about the empowerment and autonomy she felt more recently in her life. She shared, ‘[I learned to] understand and see my responsibility for my own sexual pleasure and to really take ownership of that and power of that’. She no longer felt as if her needs were irrelevant. She embraced her right to pleasure and took that opportunity to begin rediscovering her sexual self and exploring her sexuality. She felt liberated in ‘being able to learn about toys and masturbating and my own pleasure and just kinda learning about that part of it that I’d never had’. She went on to state how this experience made her feel by saying, ‘I had never felt so comfortable’. Gabbi felt her self-confidence rising in being able to speak her mind and express her sexual needs. She stated, ‘I felt like I could be the same person in my private sexual life as I am in my public life’. She went on to say, ‘I don’t have to keep it hidden away…it just feels so good to have sex and sexuality be part of [my] life and not separate from [my] life, which is what I always felt like it had to be before’.

Gabbi also noted the importance and the necessity of a supportive partner, which she found in her current husband. She stated, ‘As I found somebody that was supportive, that I felt like I could be my whole person [with], [I] could just be who I was…sex didn’t have to be done in a certain way’. She later stated that this supportive relationship allowed her to feel ‘acceptance, to be accepted that I have needs of my own and that’s okay’. She noted the feeling of being valued and respected when her partner is communicative and understanding.

Finally, toward the end of her interview, Gabbi highlighted the importance for an intersectional perspective when it comes to disability and sexuality when she said, ‘I think it’s just the interconnectedness of it all. It really is that none of it can be separated – the disability can’t be separate…’

We

We spoke compellingly about the influence of resistance discourses; she related many comments to the need to be open and accepting of the relation between disability and sexuality. She spoke about the comfort she feels in her life now to explore her sexuality and the empowerment associated with this: ‘It’s all about experimentation – healthy experimentation’. Commenting on the importance of self-pleasure and the autonomy and liberation she feels in not having to always rely on a partner, We said, ‘It’s all about knowing yourself. I know how to masturbate. If I [don’t] know how to pleasure myself, how is he gonna do it?’ She expressed that exploring her body and embracing it is not something to be ashamed of; ‘It’s knowing [my] limitations…knowing my body. Knowing what areas of my body are healthy for me to have sex because I’m not gonna put my body in jeopardy just to have sex’.

Putting her own needs first was a revelation for We and it changed how she conducts herself sexually with partners. She spoke about finding her voice and her power to express herself and her needs. She shared that she no longer feels a need to have sex in service of someone else, or that she needs to compromise her feelings. She spoke about, ‘knowing what I’m willing to put up with and what I’m not willing to put up with’. And, she described confidence in her ability to express herself now and how liberating that feels: ‘Knowing that I can say no, where in the past, some of those times I didn’t have enough confidence to say no. … I know that [I’m] number one. [I] look after [myself] and nobody else’.

We spoke about having higher self-esteem that positively impacted her sexuality: ‘I was noticing a big difference when I was with partners because I had more confidence’. She spoke about feeling valued and worthy in a sexual sense: ‘Yes, I have a disability [and] I’m worthy of having my needs met’. In discussing this shift in herself, she described how the media’s recent shifting portrayal of disability and sexuality supports resistance discourses and that this influences her. She stated, ‘There’s so many more people that are coming out that have [disabilities]…they have an awesome sexuality persona…it motivates me’. We spoke about how this more inclusive perspective on disability and sexuality in the media has made her feel hopeful: ‘It makes me stronger…[it] warms my heart to realize that could be my story. And, it’s giving [us] a voice. I think that is so cool. It gives me hope’.

Wilma

Wilma talked about her time in university and how that broadened her understandings of sexuality: ‘You didn’t have to fit into these little boxes, and you could explore your sexuality if you wanted. You could do whatever you wanted. That was uplifting’. She spoke about a shift in her thoughts around pleasure and self-pleasure and she began to explore her body and her sexuality: ‘I started to think I can just do things differently and pleasure myself differently, then I was happier, but that took a while’. She described the liberation she felt in this process of discovery and exploration: ‘As I got older, I was able to explore more on my own and realize there were different ways to pleasure me’.

When talking about significant things that stood out for her during her early years as a disabled woman, Wilma noted the process in coming to accept herself as disabled and how this related to her sexuality. She spoke about realizing her sexual self again through exploration. She shared, ‘…coming to a realization that I could still have sex and it would still be pleasurable to me…that really stood out and it made me realize I hadn’t lost that’. She spoke of a personal revelation at this time in keeping with resistance discourses: ‘Even though you have disabilities, you still are sexual’. Wilma attributed some of the work of resistance to shifts in media, including the rise of the Internet, and the more recent attempts at disability inclusivity within media.

Wilma described feeling more comfortable and confident in her sexual self in later years: ‘I think I’m a pretty sexual person. And, sex does have an important part in my life… I think that as I grew, I got more comfortable with what I had to give’. She feels much more empowered to express her own needs and she sees the importance and value of her needs: ‘Now I am more wanting of pleasure and I feel alright with wanting that’. She also noted the importance of the understanding, communication, and respect that she feels with her supportive husband and the significance of this relationship in terms of her personal worth.

Arianna

Arianna spoke a lot about her current husband as a game-changer for her confidence. Her sexual awakening came with him, as well as her interest in learning more about and exploring sexuality. Arianna spoke about feeling sexually empowered in her current relationship. There is strong communication, understanding, and respect between her and her husband. Exploration and pleasure are a focus in her sexual life now where it never existed before. She explained the shift from previous relationships: ‘I don’t think I understood sex before. … It’s not like a duty anymore, it’s kinda fun! It’s quite enjoyable!’

Arianna spoke about the freedom she feels to explore her sexuality and explore sex that is pleasurable for her and her husband: ‘Figuring out what was comfortable for both of us. Actually exploring it in a fun way…find[ing] out what each partner likes’. She feels more comfortable and confident in her sexual life now: ‘I feel good about it. I don’t feel hesitant’. She described feeling empowered, liberated, and autonomous in her sexual interactions: ‘Well, if I want to, I can start it…I can ask if I want to. Or, even admitting that I like it’. Arianna shared that she feels valued, supported, and loved in her life now. The communication, understanding, and respect Arianna feels with her husband allows her to feel that she can express her desires and needs. She described her sex-life with her husband: ‘As far as I’m concerned, right at this moment, when it comes to that part, I got it made!’

Finally, Arianna made several comments in-line with resistance discourses. She stated, ‘Just ‘cause you’re disabled doesn’t mean you don’t want sex’. She summarized, ‘Whether you’re disabled or not disabled, we all have the same feelings, wants, and needs…You like sex just as much as anybody else!’

Gail

Gail mentioned more inclusive discourses that have shifted her thoughts and feelings about disability and sexuality in recent years. She noted a shift in social narratives emerging in online communities around disability and sexuality: ‘The general mentality is that it’s normal to be disabled and have a sexual relationship…in the last few years there’s definitely been a switch’. When I asked her how she felt about this, she said, ‘[It’s] kind of a relief’. Gail felt more empowered to find and use her voice, and this has made her feel much more confident in sexual interactions with partners. She stated, ‘I was able to basically empower myself to improve my communication…I was able to break outta my shell and speak up a lot more’. She elaborated, ‘I was able to speak my mind and my voice and express my opinion and I wasn’t rejected because of it’. She felt more space in general to express her needs in sexual interactions. Her feelings shifted from the shame and embarrassment she felt before, and she shared how she felt after a sexual encounter whereby she used her voice and expressed herself: ‘I didn’t have this deep, grinding shame’.

Gail expressed the importance and necessity of open, honest, and supportive communication in sexual relationships and how this is what she strives for now. She stated, ‘You have to talk about the good and the bad… You have to be open and honest in a sexual relationship, if not, then there’s no point’. She feels liberated to own her rights to sexuality and sexual pleasure: ‘I know in my mind now [that] it is okay to have sex. It is nothing to be ashamed of, and as a disabled person I have a right to have as much sexual pleasure as anybody else’. Gail also feels empowered to be autonomous in her sexual life: ‘I can control who I have sex with now and when I have sex. And, I have the ability to say no now that I didn’t used to have’. This has given her greater self-assurance as a sexual woman: ‘Just because I’m disabled doesn’t mean I can’t be sexual’.

In this research, resistance makes attempts to controvert the more oppressive scripts put forth by ableism and sexism. It makes space for more inclusive and intersectional perspectives about disability and sexuality and works to shift social understandings of disabled women’s sexuality toward an empowerment perspective. During a follow-up meeting to member check with some of the women about the data analysis, they stated that the notion of resistance represents their reality and they felt supported and empowered to claim their sexual rights because of it. They also stated that resistance discourses allow for the complex, intersectional nature of their lives. However, just because resistance was present throughout all the women’s stories, it in no way homogenizes them. It should be emphasized that each woman’s subjective sense of herself as sexual is distinct. Further, the more stories we draw from in understanding disability and sexuality as a society, the fuller and more inclusive those understandings can become over time.

Discussion

Disability and sexuality are two concepts that are rarely juxtaposed, and even less likely to be interrogated. Sexual expression and sexual pleasure are human rights, but these rights are often disregarded and sometimes even contested for disabled people. This is a threat to sexual citizenship. I propose that one way to work toward achieving sexual citizenship for disabled women is to explore and discuss the influence of resistance. Resistance works bidirectionally in this research. It is a discourse that manifests both outside and within the women; societal shifts toward inclusion and sexual citizenship inform and are informed by resistance discourses. They are a complex set of discourses and pinpointing their origin is difficult. Discourses shape peoples’ understandings, interactions, and experiences, but they are also the product of those same things and are produced and reproduced constantly (Berg 2009; Burr 2015; Gergen 2015). I propose that resistance discourses are an uprising from the grassroots of disabled perspectives. This movement creates and informs more inclusive ways of thinking that, in turn, furthers the scope and influence of the movement; the women in this research are both influenced by and influencers of resistance.

Resistance works by exposing and interrogating previously un-questioned and taken-for-granted social narratives about disabled women’s sexuality (Erevelles 2011; McRuer 2018). It offers a narrative that includes the complex, intersectional, individual experiences of disabled women instead of limited, homogeneous, oppressive social understandings that dictate and appropriate personal experience. Resistance discourses are the birthplace of re-imagining disability and sexuality – the birthplace of sexual citizenship and disability justice. Resistance discourses help shape a fuller, richer understanding of disability and sexuality that serves both disabled and non-disabled people. Language has the power to shape and re-shape culture; resistance can be a part of this re-shaping.

A social framework shaped by resistance discourses can affect those outside the disability community. The women in this research spoke about the importance of supportive sexual partners, and some of the women are now married to non-disabled partners. Other disabled women speak about the benefits of disabled sex in terms of communication with partners. When in a supported relationship with a trusted partner, some women express that their impairment leaves no choice but to communicate effectively with their partner in efforts to explore sex together (Drummond and Brotman 2014; Leibowitz 2005; Parker and Yau 2012). Non-disabled sexual partners of disabled women need to be informed and understanding; having access to accurate portrayals of disability and sexuality can change skewed expectations that could otherwise exist. Further, we cannot forget the contingency of a non-disabled state; most people will experience disability at some point in their lifetime meaning sexual citizenship for disabled people is sexual citizenship for everyone.

Disability identity and subjectivity is complex and fluid – certainly more complex than the mainstream socio-cultural representations of it. Nonetheless, how someone adopts or resists these narratives is a factor in shaping both the identity and the narrative. Narratives of bodily difference need to be highlighted at the periphery in order to expose and interrogate the norms being held-up by the dominant center (Garland-Thomson 1997). Gergen (2015) lays out three waves of identity politics: there is resistance in the rejection of dominant, unhelpful misrepresentations; identity activism in efforts made by marginalized populations to express their stories in their own voices; and category deconstruction in breaking the essentialism that perpetuates marginalization. Therefore, it is important to highlight the subversive subjectivities that break away from the socially constructed misrepresentations of disabled women’s sexual lives.

Resistance to and internalization of oppression are not mutually exclusive: those who resist are also, in many cases, carriers of internalized oppression and feel the effects of that. Often there are elements of both resistance and internalization intricately weaved throughout a disabled woman’s life. The women in this research are a testament to this with stories and experiences that reflect a multitude of influences. I argue that the pressures of oppressive discourses like ableism and sexism led to the women’s adoption of resistance discourses in the narratives they shared. The women favoured inclusive and intersectional understandings of what it means to be sexual, disabled women. Resistance empowered the women; there was liberation and solidarity among them despite the oppressive discourses they’d had to contend with throughout their lives. It is important to foster these powerful, positive perspectives that are often overlooked.

The fact that discourses are not static means they are subject to shifts in both their construction and their position within society. Previously upheld narratives can fall, and previously disregarded or repressed narratives can rise. This underscores the importance of resistance narratives as a resource for other disabled women to draw from, and for society to broaden the public knowledge of what disability and sexuality means. Inclusive personal experience narratives around disability and sexuality serve everyone from those who are disabled or love someone who is disabled, to those who may one day become disabled. Allowing for the full inclusion and accurate representation of disabled women’s voices and experiences opens up the parameters of social understandings of the body and of disability and sexuality that can serve everyone (Shildrick 2007). Linton (1998a) speaks of disability as a prism through which to gain a broader understanding of human existence and variation. It is inextricably linked with human existence, and it is a starting point from which to theorize that existence.

There is a need for new ways of thinking about sex and pleasure, a greater focus on the sex-positive experiences of disabled women, and stories that highlight the sexual social positioning of disabled women that can threaten sexual citizenship (Drummond and Brotman 2014; Esmail et al. 2010; Liddiard 2018; Sahay et al. 2012). In a sex-positive memoir, disabled activist and sex educator, Kaleigh Trace (2014), attempts to open this conversation by being delightfully and intentionally sexually crude; she is a proponent of resisting the mainstream narratives around sex. In cases of acquired physical disability, Parker and Yau (2012) state that experimentation and exploration in finding new erogenous zones and getting to know one’s body creatively in its new form is key to sexual expression. Further, disabled sex can be said to be freeing; it is not tied to notions of heteronormative, phallocentric, penetrative sex – sexual exploration beyond those restrictions can broaden the notion of what sex looks and feels like (Esmail et al. 2010).

It is integral to focus on sexual citizenship for disabled women. Disabled women’s sexual desires and needs do not necessarily differ from those of non-disabled women, but this is rarely talked about (Fritz, Dillaway, and Lysack 2015; Jungels and Bender 2015; Liddiard 2014; Trace 2014). Disabled women see sexual intimacy as important for their sexual lives and well-being, and some women report wanting to be more sexually active than they currently are. Sahay et al. (2012) found that the disabled women in their study are still very interested in sex, and that they are actively pursuing that desire because they consider their sexual lives to be an important personal focus. In another study by Liddiard (2014), disabled women described intimate relationships as beneficial, a safe space, and a means to challenge oppressive discourses. These sexual interactions also provided reassurance of the self as desirable, contradicting dominant cultural representations of disabled bodies as unattractive (Liddiard 2014). Disabled women note that they need to be recognized as sexual beings, but that societal attitudes to change for that to happen (Addlakha, Price, and Heidari 2017; Leibowitz and Stanton 2007; Parker and Yau 2012). Making room for more inclusive and positive narratives around disabled sexuality and insisting on positive sexual representations of disabled people is a necessity for this attitudinal shift (Shildrick 2009).

Kafer (2013) speaks about the resistance she has witnessed and taken part in within the disability community in efforts to challenge the oppressive discourses that often prevail; resistance is fierce in its honest portrayal of disabled voices reclaiming their rights to social justice. Kafer (2013) highlights the contestable nature of disability and the transformative possibilities in understanding it. Discourses of resistance position disability so that it is not hidden, silenced, or shamed. More space made for resistance discourses is the way to achieve a more inclusive understanding of disability and sexuality. Highlighting and centering disabled women’s voices about the topic of sexuality is a way to create that space. Resistance discourses help to oppose the social subjection of disabled women, allowing them to reclaim authorship of the narratives around disability and sexuality. Through this, there rises a demand for disabled women’s indispensable right to sexual citizenship.

Linton (2005, 518) states, we must ‘weave disabled people back into the fabric of society, thread by thread, theory by theory’. We must expose the ways that disability has been framed and work to liberate disabled people to ‘remake full citizens whose rights and privileges are intact, whose history and contributions are recorded, and whose often distorted representations in art, literature, film, theater, and other forms of artistic expression are fully analyzed’ (518). Representation affects social justice, and re-imagining disability moves toward disability justice (Garland-Thomson 2005a, 2005b; Mingus 2011). Re-imagining disability accomplishes important cultural work. It presents disability as human experience that occurs in every society, family, and most every life; it helps integrate disability into our knowledge of human experience and history and integrate disabled people into culture and society (Garland-Thomson 2005a). Disability studies points out that disability is not so much about the capacities and limitations of bodies, but more about what we expect from bodies (Garland-Thomson 2005b). Narratives of resistance are important because they push at the boundaries of mainstream understandings of disability and sexuality in efforts to crack open those narrow assumptions and offer new, more accurate representations of disabled women’s sexual lives.

Sex is a significant part of human existence and sexual citizenship is a human right. Conversations about sexual inclusion and rights, sexual expression, and sexual pleasure are integral to sexual citizenship. As a society we can broaden the narrative of what sex means: what it looks like, how it feels, and who it is for – and we can center and value disabled women’s perspectives in that endeavour. The women in this research have taken on resistance perspectives against the oppressive constructs surrounding disability and sexuality. This adoption of resistance is in efforts to re-write their own narratives and share their experiences of personal growth and empowerment in hopes of empowering other disabled women. These efforts can also help change wider social understandings of disability and sexuality, leading to greater sexual inclusion, equity, and citizenship.

Conclusion

This research focuses specifically on the intersections of disability and the gendered experiences of women in exploring the social influences on their sexual lives. This article focuses on exploring the particular significance of the social influence of resistance discourses. While this fills a critical gap and is necessary to explore and include in conversations about disability studies, sexual citizenship, and disability justice, more research can be done to further these conversations. Sexual citizenship is a component of disability justice, and disability justice is explicitly intersectional. Due to pragmatic restrictions, I was not able to explore other salient issues such as race, class, LGBTQ+, or age-related experiences and identities that intersect with disability in this research, but I insist that they be meaningfully discussed in further research.

This research exposes the subjective impacts of resistance discourses on the sexual lives of a group of disabled women, contributes to social conversations and extends social understandings about disability and sexuality, and highlights the significance and necessity of resistance discourses in the fight for disabled women’s sexual citizenship. It creates more space for disabled women’s experiences and more space for the types of discourses that can better serve disabled women. Resistance offers both unique and shared experiences, adds to the available discourses that surround disability and sexuality within our society, and centers and amplifies the voices of people that have been previously ignored.

The women in this research stated that resistance represents their reality. It represents strength, commitment, pride, and reclamation. This resistance makes space for the diversity of life and the expression of voice, confidence, liberation, and solidarity. The women spoke about feeling more worthy, empowered, and autonomous in their sexual lives. They spoke about the freedom they feel to express themselves now, to talk about their sexuality and to own that, and to claim their rights to pleasure and sexual citizenship. Resistance is an answer to the call for sexual citizenship and disability justice. It is a response to the lack of disabled perspectives in our society. It is a roar; a palpable force pushing back from the margins of society to claim the spotlight it is due.

Acknowledgements

I start by giving thanks to the women that took part in this research. This work is dedicated to all of you. It would not exist without you and your courage to share such intimate, beautiful stories. I am grateful that you chose to share your stories with me, and I am honoured to have been trusted with presenting them. I will always treasure the gift of working with you. I also thank my past and present mentors. You’ve encouraged me, sharpened my skills, and taught me important life lessons. I appreciate you. I celebrate you. Finally, many thanks to my family and close friends. You are my source of love and laughter. Thank you for raising me, nurturing me, understanding me, and accepting me. You are invaluable to me.

Disclosure statement

No potential conflict of interest was reported by the author.