Abstract
Within critical disability research, little attention has been paid to the concept of complaint in relation to disabled people. While the demand for thankfulness has been studied to some extent, it is interesting to investigate how and if the complaints of disabled people are heard. This paper explored disabled people's experiences of expressing complaints within the context of sexuality, and the reaction such complaints stirred. The experiences of marginalised groups are often coloured by microaggressions that are not very visible and are regularly trivialised. Studies have shown that microaggressions are a dominant factor affecting the daily lives of disabled people and are thus important to examine further. The data were collected in 2019 and consisted of five interviews and three focus group meetings with 13 participants. Our findings showed that microaggressions are a leading factor in disabled people's daily lives and that they require constant reaction. One of the manifestations of microaggressions is the idea that disabled people should be grateful; thus, they have little room to complain, make demands, or set boundaries. Therefore, expressions of sexuality and desire are often accompanied by feelings of shame among disabled people.
Being a disabled person in a world created by and for nondisabled people forces disabled people to constantly fight for basic human rights. Being regarded as incapable, undesirable, and a burden keeps disabled people at the margins of society. Underpinning this marginalisation are ableist and capitalist values that dictate what it means to be human and what kinds of lives are worth living. As a result of the propagation of these values, disabled people are also seen as asexual and assumed incapable of love.
We begin this paper by establishing our positionality as researchers and authors. This is usually done in the methodology chapter, but we felt it necessary to acknowledge who we are and how our positions and identities affect every aspect of our research process (Bourdieu & Wacquant, 1992). Standpoint matters, from the establishment of the research topic and the questions we asked to our theoretical grounding, the coding of the data and how we present our findings (McCorkel & Myers, 2003). We are White cisgender women born and raised in Iceland and working in academia. Ásta identifies as currently nondisabled, 1 heterosexual, with a permanent position at a university. Embla identifies as a physically disabled lesbian, scholar, and activist. These subject positions entail both privilege and marginalisation, influencing our research and how we write and think about disability and sexuality.
Theoretical grounding
Critical disability studies and feminist theories are cornerstones of our approach, as these fields share the goal of disrupting the normative. Critical approaches focus on uncovering processes of knowledge, power, and exclusion (O’Dell et al., 2016), and in general aim to emancipate from hegemonic ideologies “that structure personal consciousness, representations, social relations and practices in everyday life” (Meekosha & Shuttleworth, 2009, p. 53). Therefore, critical disability theories enable us to critically examine the social construction of disability and the ways that ableism affects our understanding of humanity. We refer to ableism as a value system that stereotypes, discriminates, and socially oppresses disabled people. The ableist perspective emphasises the act of “othering” disabled people and can be described as a set of concepts, practices, social relations, and institutions that presume able-bodiedness (Bogart & Dunn, 2019).
Because ableism is an integral part of the normative hegemonic ideology of the West, it is generally invisible (Goodley, 2014). Ableism manifests frequently in the form of microaggressions, which are intangible discriminatory interactions, whether unintentional or intentional. Microaggressions refer to incidents that may seem trivial, but when people in marginalised positions experience such incidents frequently throughout the day, the effects and consequences can be significant (Sue, 2010). Microaggressions can manifest in words, tone of voice, gestures, attitudes, and behaviours, which often prove difficult to explain and precisely distinguish (Pierce et al., 1978). The idea of microaggressions is therefore useful in shedding light on the subtle, everyday forms of discrimination and aggression faced by disabled people, which require constant reaction (Keller & Galgay, 2010). Because microaggressions are often wrapped in the façade of an act of kindness or “niceness,” it can be complicated or difficult for disabled people to criticise such aggression. In doing so, they often face disbelief or minimisation, which Sue (2010) termed “microinvalidations.” To navigate all of this, a lot of hidden emotional work is required, which we refer to as “disability work.” The concept of disability work was inspired by feminist scholars’ discussions of the hidden gendered work inherent in heterosexual relationships (Hochschild, 2012). This concept has also been used by Liddiard (2014) as a framework to explore disabled people's lived experience of intimate relationships. Disability work can be both emotional and practical. We follow Liddiard's (2014) definition of emotional work as “effort and skill required to deal with one's own feelings and those of others withing the private sphere” (quoted in Exley & Letherby, 2001, p. 115). Practical disability work can consist of tasks such as ensuring accessibility when going to new places, ordering medical supplies on time, or scheduling meals or bathroom breaks according to other people's schedules. In this paper, we focus on the emotional aspect of disability work.
We believe that the growing body of research on microaggressions and disability is important in advancing both disability studies and disability activism because such efforts can shed light on aspects of disabled people's lives that have often been overlooked. Simply concretising a term, such as “microaggression” and “ableism,” that can explain a social experience from the margins can be of great significance. We believe that by focusing on microaggressions in research on disability and sexuality, we can begin to see the disability work that such navigation entails, and therefore gain a better understanding of the daily realities and hindrances that disabled people face when addressing their own sexuality.
Feminist theories also play a big role in our work, especially theories on intersectionality and the effects of multiple oppressions, since disabled people belong to various groups (Garland-Thomson, 2002). The works of Black feminist thinkers such as Audre Lorde (1984), Kimberly Crenshaw (1991), and Patricia Hill Collins (2000) played a pivotal role in our formulation and understanding of our data. For example, the concepts of intersectionality play an important role when analysing both privilege and marginalisation, and how they can overlap. Who gets space to explore pleasure, voice to name their desires, or/and is restrained by several oppressive systems such as ableism, sexism, and heteronormativity.
Previous research in the field of disability, sex, and sexuality has highlighted that disabled people are routinely and systematically kept away from accessing intimacy and sexuality (Duffy, 1981; Liddiard, 2017; Shakespeare, 1996; Waxman, 1994). The concept of a sexual script originates from the field of symbolic interactionism. It is employed to illustrate the unspoken societal norms that govern our behaviours and expectations regarding sex and intimacy. It has been used to describe the unwritten narrative of how sex should be, how things should be leading up to sex, and what should happen after sex (Gagon & Simon, 1973). Additionally, the gendered nature of the sexual script assumes very different roles for men and women, where sex is centred on a man's pleasure, specifically around penetrative sex. The beginning and the end of sex are framed around the man's needs, and women are assigned the supportive role. This heteronormative sexual script has led to a well-known orgasm gap between men and women (Gurney, 2022).
Similar to any other social script, it is complicated, if not impossible, to navigate the sexual script as a disabled person when the existence of a disability is simply not a part of the script. The ways in which disabled people are infantilised and seen solely as asexual is a good example of this (Duffy, 1981; Liddiard, 2017). It is evident that while the traditional heteronormative sexual script dominates (Gurney, 2022), sex and pleasure in relation to marginalised bodies can be radical in themselves. Audre Lorde (1984) explored the topic of pleasure and eroticism in her speeches and writings. In her speech “Uses of the Erotic: The Erotic Power”, Lorde (1984) emphasised the importance of pleasure and the erotic in her own recovery from breast cancer. She believed that pleasure and eroticism have the power to bring about social change.
Lorde further argued that marginalised groups have been denied access to pleasure and the erotic, and she encouraged individuals, particularly women, to embrace the erotic as a source of strength. It is important to note that the erotic is not solely focused on sexual pleasure but encompasses a broader range of experiences. Lorde believed that a deep understanding of pleasure and the erotic can empower individuals to challenge societal norms and work towards social change: “In touch with the erotic, I become less willing to accept powerlessness” (1984, p. 58). However, it is important not to confuse Lorde's writing about the erotic with the individual self-improvement rhetoric in our neoliberal times. Lorde's work was always grounded in a social context, emphasising the need for shared experiences and perceptions to bring about collective action and meaningful social change.
In researching disability, sexuality, and microaggression, the social and cultural aspects of shame piqued our interest since the experience of shame in relation to sexuality gets in the way of experiencing erotic pleasure and power. Theories of affect (Probyn, 2005) have been particularly helpful in revealing insights into the experience of shame, and the work of Sarah Ahmed (2010) on the stickiness of emotions and bodies has been foundational. We also employed Wetherell's (2015) affective discursive practices to showcase the profound impact of various emotions on our research participants. This kind of use of affect as a methodology (Åhäll, 2018) can therefore be seen as both theoretical and methodological. Furthermore, theoretical writings on shame (see Ashley, 2020; Giordano, 2018; Goldberg, 1991; Slobodin, 2019) are helpful in showing how shame influences how people, often unconsciously, move in the world, as shame is externally imposed through the message that being disabled is an invalid social position (Jóhannsdóttir et al., 2021).
Lastly, Sarah Ahmed's (2021) writing on complaint is a key text and provided us with tools to look at the social constructions of complaint and how they are connected to power and privilege, how some people and some complaints are passed over. Ahmed (2021) explained how a complaint is not only seen as negative: “It is to be stuck on being negative. To complain is how you would stop yourself from being happy, to stop others from being happy too, complaint as a killjoy” (p. 12). She argued that those who complain—those who challenge power—become sites of negation, that “to complain is to become a container of negative affect, a leaky container, speaking out as spilling over” (p. 32). Even though complaints can be expressions of pain, grief, or dissatisfaction, being heard as complaining is being invalidated. That is, the contents of the complaint are not important; the complainer is not important. This bears a similarity to the idea of microinvalidation (Sue, 2010)—when disabled people experience a microaggression and, in sharing that microaggression, get invalidated, they are seen as complaining. Therefore, by listening to the complaint, the experiences of our participants get validated.
Methodology and analytical approach
This study is part of a qualitative research project focusing on disabled people's experiences with microaggressions in relation to sexuality. In this paper, we look specifically into the microaggression that manifests in the imposition of the duty to be grateful and the right to complain, using theory-driven data analysis (Braun & Clarke, 2021). Data collection took place in 2019 and consisted of three focus group meetings (two women groups and one men group) plus five individual semistructured interviews with four women and one man. These two methods worked well together, as discussions in the focus groups tended to be more general, even though people shared personal experiences. The benefits of focus groups can be that in sharing views and stories, participants have an opportunity to mirror and validate each other's experiences (Krueger & Casey, 2014). This does not always happen and depends on the atmosphere in the group. Therefore, using individual interviews allowed for more room to probe and ask in greater detail about specific experiences (Braun & Clarke, 2013).
Participants and analysis
To recruit participants, Embla leveraged her connections to the disability community and published information about the research on various forums for disabled people. It varied whether people wanted to participate in a focus group or an individual interview. The 13 participants had various kinds of impairments and sexual orientations. Three lived in institutionalised service settings, while all the others lived in their own houses, either alone or with their families. Three participants identified as queer, and only one was Black. The individual interviews lasted between 1 and 1.5 hours and took place in the home of either Embla or the participant's. The focus group interviews lasted around 2 hours each and took place in meeting rooms at the university where Ásta works.
To analyse the data, we used reflexive thematic analysis (Braun & Clarke, 2021) where our own positions and feelings towards the subject were always continuously present. With that in mind, we were aware that discourses serve as vehicles to circulate affect (Wetherell, 2012). We applied affect as a method (Åhäll, 2018), being mindful of investigating the affective discursive practices (Wetherell et al., 2020) taking place. For this particular paper, we especially focused on complaint, who is seen as complaining (Ahmed, 2021), and the constant requirement to be thankful as a disabled person (Wong, 2022). To be able to hear a complaint, we must listen with a feminist ear, which is to hear who is not heard. Marginalised people are often not heard, as we have been taught to tune out certain groups in society, with disabled people being one of them. Therefore, we tried to apply the feminist ear as a research method (Ahmed, 2021). We heard the complaints together when analysing the data. This was a necessary process (being together) because of the heaviness of the data, and because we needed to support each other and provide comfort during the process. Ahmed (2021) talks about how we can come to hear what we did not know about when we are involved in hearing complaints. This was especially true for Ásta, since her personal experience has been as a nondisabled woman so far, further emphasising the importance of the positionality of the researchers. To listen for what is not said is also important when applying a feminist ear, to hear the silence, to hear what is not being said, done, or dealt with (Ahmed, 2021).
It's worth noting that this phrase, “listening with a feminist ear,” does have an ableist connotations implying that researchers must be able to hear in order to lend a feminist ear. Obviously, the ability to use one's hearing is not required to use this approach, rather it requires understanding the stories that are usually not heard. In the context of our research, this meant teasing out from the data, using the above lenses, the often subtle stories our participants told of complaint.
Ethical considerations
In the process of this research, the ethical guidelines of the University of Iceland were followed and integrated into every step. The information letter for the research was written in an easy-to-read manner and delivered to potential participants both on paper and verbally to ensure accessibility. The informed consent form was also written in an easy-to-read manner in Icelandic, and delivered and discussed thoroughly with our participants. The consent form specifically outlined that participation would not affect any services they might have been receiving and that participants could withdraw from the research at any stage without consequences or explanation. Due to the small size of the population in Iceland, we decided not to use pseudonyms to prevent the possibility of readers later connecting quotes to individuals.
As one of us is a disabled researcher and the other is not, we put a lot of emphasis on locating ourselves throughout the whole process. We felt that our positions impacted every step of the process. Since one of us is involved in the disability community, reaching out to potential participants was relatively easy. When it came to the interviews, participants often used the word “we” or phrases such as “as you know” when talking about their experiences, which made the whole discussion less othering. Participants engaging in qualitative research always speak into the knowledge frame that they assume the researcher occupies (Rice, 2009). Therefore, a nondisabled researcher might obtain better general descriptions of experiences of ableism and microaggression because the participant assumes that such detailed information is needed. At the same time, participants might be more likely to dive right into in-depth discussions on complicated nuances when it comes to ableism and microaggression with a disabled researcher, because general introduction is assumed not to be needed.
When researching disability, sexuality, and sex, it is crucial to build trust and some kind of shared understanding of the world with research participants due to the level of vulnerability required. To establish such trust, researchers must engage in being vulnerable throughout the research process. At the same time, we are aware of the potential risk of assumed sameness, and therefore, it was helpful that one of us had the outsider position as a nondisabled person. This was especially important in the analysis process, enabling us to engage in dialogue about our different understandings and interpretations of the data.
Findings
We present the findings in four sections to map out our participants’ experiences of expressing complaints within the context of sexuality. Together, these sections—Complaining While Disabled, Disability Work, Crip and Queer, and Who Gets to Cum—form a story of not being heard.
Complaining while disabled
The issue of complaint and the ableist notion that disabled people should be thankful and polite occurred significantly throughout our data and across our themes. It was made obvious that disabled bodies complaining are sticky (Ahmed, 2010), and they themselves are considered the problem. Disabled people have nearly no room or space to express themselves because of this stickiness. The fear of being considered rude is not without reason. Disabled people, especially those who depend on assistance, being perceived as rude can, in the best case scenario, negatively affect their service and, in the worst case scenario, be life threatening. Our participants described in various ways how they did not have space to express their feelings without the fear of being perceived as rude, unfair, or outrageous, similar to Ahmed's (2021) account of complaint in relation to other marginalised groups.
Direct discussions about the issue of complaint were scarce, but one account was crystal clear. Complaint in relation to a partner or a spouse, something many of us do casually (e.g., when they fail to empty the dishwasher), is not allowed for disabled people, particularly in interabled relationships.
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The following was shared by a woman who became disabled later in life and had a nondisabled husband: Yes, yes, yes, you know, like when we are arguing, me and my husband - about something I’m not happy about in his behaviour - people aaaaaaalways say “but he's so great and lovely and you know, he's under a lot of stress.” Yes, exactly, this fucking stress! Researcher: So people think he's under a lot of stress? Oh, yes, he is under so much stress. I get to hear that all the time, and I never heard it before, … People never talked about him being under a lot of stress before I became disabled…. So yes.
One woman in the focus group discussed rather casually how such demands on her being grateful and having no expectations can start right in the beginning of possible relationships: So many times I have gotten messages from guys on social media that show interest in me. And soon I realise that they are this type of guys … I don’t know how to phrase it … they are probably going to be violent towards you at some point. You know … these guys that stalk disabled women because we are supposed to be so grateful that someone is interested in us. Then, if I am not interested in them, they even get offended, and are like “WHAT!”
Disability work
Examples of disability work were included in our data. When we talk about disability work, we refer to the hidden extra work demanded from disabled people to navigate a nondisabled society. This work can be both emotional and practical. In this paper, we focus on emotional disability work.
It was quite tricky to get clear descriptions of disability work from our participants because of the deep shame surrounding it. For many participants, disability work is invisible, conditional, and an inseparable part of being a disabled person. The emotional work is often carried out as a result of the fear and shame of causing discomfort to others. When we asked participants for details on the impact of microaggressions in order to seek out the otherwise unspoken disability work, they often used phrases such as “well, I can admit that…,” implying that such experiences are loaded with shame (Probyn, 2005).
The shame we observed is very much connected to neoliberal individualist ideas of individual success and responsibility. Our participants’ discourse reflected these ideas, and the following is a quote from a disabled man in his 40s that exemplifies this discourse that was discovered in almost every interview we conducted: I can admit that, you know, when going clubbing and all this shit that happened there, today … I haven’t gone to these places for many years because I just cannot be bothered to deal with all this shit.
There were, however, participants who seemed to be, in some way, aware of the disability work they engaged in, for example, the extra work they would have to put in when communicating, especially with strangers: I am now in that place that I am very formal in everyday communication with others, or you know, this jolly-girl type so that people don’t get the chance to hassle me about it … you need a lot of strength to keep this up, and I feel that it is on me to show initiative so that everything does not go to shit.
Crip and queer: Intersectionality in the data
Intersectionality was present in the data, particularly the intersection of sexism, racism, and heteronormativity. Participants, especially women, discussed their confusion regarding ableism and sexism, as they were often unsure whether the discrimination or microaggression stemmed from sexism or ableism, and they wondered if disabled men were treated differently. The intersections of heteronormativity and ableism appeared prominently among queer participants. They had all experienced some form of homophobia, either from their own families or from strangers. Interestingly, the assumption that disability is linked to asexuality was more prominent among disabled queer women in our study. Throughout history, women in same-sex relationships have often been able to conceal their romantic relationships more easily than two men or heterosexual couples, primarily due to societal norms surrounding strong friendships among women and the perception that close relationships between two women are not seen as a threat (see Ellenberger et al., 2021). These norms, alongside ableist ideas, manifested in the experiences of queer women in the following ways: People always assume that we are sisters when we are out together. Then we explain that we are actually dating, and people get very awkward. This question, “are you sleeping together?” You know, it's just so disappointing. Even though you try to let these kinds of things not affect you, it is really disappointing to get this right to your face. I mean, you are a grown person. Sometimes, I feel like people assume that we are just some fucking Peter Pan that doesn’t grow up and stays 12 years old forever! [laughing]
However, we saw ableism and heteronormativity play out quite differently for a gay man in the study, where the intersection has led to invasive personal questions about his sex life: I am gay, and everyone is just like, “Oh my god, how cute, do you wanna see the disabled gay guy?” I have not experienced any serious discrimination while clubbing, but there are many guys who want to hug and kiss you and go home with you. There are many I know who just want to test my ass.
Who gets to cum?
When looking at the intersections of ableism and sexism in relation to sex and pleasure, the question of “who gets to cum?”; or who is allowed to discuss lack of pleasure, is important. Within the heteronormative sexual script, the pleasure of women and disabled people has been seen largely as irrelevant. In recent years, there has been a growing discussion on the importance of breaking out of this heteronormative sexual script, shifting the focus from the idea that the end goal of sex is orgasm to create more space for intimacy and different forms of pleasure (Gurney, 2020). We believe that this discussion is very important.
However, as we shuffled through our data repeatedly, we became puzzled by the ways in which this discourse was used by the participants. At first, when we started noticing this discourse, we saw it as liberating and as a way out of the heteronormative sexual script. However, when we looked a little closer, we realised that this discourse was mainly used by our participants to justify their lack of sexual pleasure. In all the interviews we asked participants directly what they considered as “good sex,” only two out of 13 participants named orgasm or pleasure as important. Most of the other participants described emotional connection and being together as the most important elements of “good sex.” The general understanding was that casual sex was not good, as the women in the focus group discussed: When there are no emotions, it is not worth the bother [to have sex]. I have experienced it and that kind of sex is incredibly boring.
One participant who identified as a pansexual woman described the following when discussing what she thought of as “good sex”: I think that sex with women is totally different. I feel that there is more equal communication. Women are willing to do everything for you, you know, and you can assume that it is possible—to do anything for each other. And even if you want different things, yes, anything is possible.
Concluding remarks
As a result of ableism and marginalisation, disabled people have very little space to simply exist in this world, being stuck fighting for survival and focusing on being of as little inconvenience to others as possible. Making thriving as a disabled person an unreasonable demand. This social situation has a significant impact when it comes to sex, sexuality, and intimacy for disabled people. Because disabled people are infantilised and not expected to engage in any sexual relations, it can be very difficult for this group to feel empowered to seek a fulfilling sex life. Expecting a fulfilling sex life as a disabled person is likely to come across as demanding too much, and such expectations are likely to be perceived as a complaint. While to be seen as complaining in relation to sex and intimacy is disheartening in itself, such perceptions are also dangerous and can result in intimate partner violence.
We argue that disability work, especially being constantly seen as complaining, is, in a way, a hindrance for disabled people to access their own erotic self. Audre Lorde (1984) argued that erotic power is the key to being able to bring about social change, but, at the same time, the demand for social change that comes from marginalised groups is always considered a complaint. We believe that it is crucial for us, as women and being disabled in academia, to use our privileges and positions to truly give voice to stories that usually are not heard. Therefore, listening with a feminist ear makes it possible for us to better understand and hear our own voices and the voices of other disabled people as something more than complaint.
We believe that further theoretical discussions on microaggression and complaint in relation to disability and sexuality have the potential to enhance and broaden the discussion on sexuality in disability research. To live a fulfilling and authentic life as a sexual being, one must have the space and be allowed to explore and voice one's desires. Currently, many socially constructed systems, such as ableism, sexism, and heteronormativity, prevent this from being the case for many of us.
Footnotes
Acknowledgements
We would like to express our deepest gratitude to the participants of this research. Thank you for sharing both pleasure and pain, this research would not be, if not for you. We would also like to thank the brilliant feminist reviewers whose constructive and respectful comments helped make this paper so much better.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Iceland Research Fund.
