You Have to be Normal to be Abnormal: An Empirically Grounded Exploration of the Intersection of Asexuality and Disability

Locating Asexuality

In human sexualities research, considerations of asexuality have been rare – although the term has at times been used to denote low scores on measures of both homosexuality and heterosexuality in sexological typologies, or as a repressed subset of homosexuality (Przybylo, 2012). It has also been used to describe romantic but non-sexual relationships between lesbians (Rothblum and Brehony, 1993). There are also several bodies of sociologically inflected literature that are concerned with the ascription of asexuality to particular marginalised groups – for example, Asian men (Kong, 2012), older persons (Gott and Hinchcliff, 2003), lesbians (Iasenza, 2002) and disabled persons (O’Toole and Bregante, 1992). Outside these spheres, however, a number of people have also begun to actively claim a distinctively ‘asexual’ self-identity, facilitated by the emergence of campaigning websites and forums such as the Asexuality Visibility and Education Network (AVEN) in the past decade or so. This in turn has led to a developing body of academic literature that focuses on asexuality as an emerging identity.

Defining Asexuality

AVEN defines an asexual person as ‘someone who does not experience sexual attraction’ (AVEN, n.d.), although not all asexual-identified persons agree with, or use, this definition (Scherrer, 2008). There are also active debates within the literature regarding how to best define asexuality, and ‘operationalise’ the term in research (Chasin, 2013; Hinderliter, 2009). Asexuality can also be thought of as an ‘umbrella’ term encompassing a wide range of nuanced identities and orientations. ² Crucially, within the asexual community, and in the majority of the asexuality research literature (Przybylo, 2012), asexuality is understood not as a dysfunction in need of correction, but as a variation in sexual subjectivity. However, in a context where a lack of sexual desire has been, and continues to be, subject to medical and psychiatric intervention, debates around asexuality’s links to medical and psychiatric diagnoses are ongoing, particularly with regards to whether and how asexuality can be differentiated from diagnoses such as Hypoactive Sexual Desire Disorder (Chasin, 2013; Flore, 2013).

Situating the Research

As mentioned previously, this research arose in dialogue with Eunjung Kim’s (2010, 2011) writings on the confluence of asexuality and disability. Kim makes the claim that asexual-identified disabled persons are at risk of double erasure given attempts by the asexual community to distance themselves from disability, and attempts by the disabled people’s movement to distance themselves from asexuality, as both seek depathologisation. Focusing first on the asexual community, Kim (2010) argues that asexual activists have stressed the healthiness of asexual individuals – for example, by emphasising that the ‘plumbing works fine’. However, Kim makes the point that claiming legitimacy on the grounds of good health and bodily normalcy could have the effect of marginalising disabled or chronically ill persons who identify as asexual. Turning to disability scholarship and activism, Kim (2011) argues that there has been a discernible attempt to distance disability from asexuality (i.e. from the assumption that all disabled persons are asexual). We see examples of this in the argument that asexuality is a myth (e.g. Milligan and Neufeldt, 2001) or in the conceptualisation of asexuality as ‘internalised oppression’ (e.g. Goodley et al., 2012: 331). There has also been a parallel move to naturalise and universalise sexuality – for example, in the work of the disability activist group Yes We Fuck. There has also been a focus on the active sexual lives of disabled persons (e.g. Shakespeare et al., 1996), although this is often accompanied by a critique of the institutional, structural and cultural barriers that disabled persons may face with regards to sexual expression. In the field of ‘Crip Studies’ – informed by post-structuralism and queer theory – disabled bodies have been valorised as part of the queer project, and are seen to offer expanded possibilities for sexual pleasure and experimentation (e.g. McRuer, 2006). However, Kim argues that this work – whilst important in challenging the assumption of asexuality – also has the potential to stigmatise disabled persons who do actively claim an asexual identity. Kristina Gupta (2014) develops this further: analysing the responses to a US disability discrimination case where sex was ruled to be a ‘major life activity’, Gupta argues that the disabled people’s movement and asexual community each failed to recognise the existence of asexual-identified disabled persons in their respective commentaries.

However, while these texts are thought-provoking, they are problematic in failing to engage with any of the persons Kim and Gupta suggest are vulnerable to erasure. This is indicative of a broader trend discernable in much of the academic asexuality literature. For example, several authors (Fahs, 2010; Gressgård, 2013; Przybylo, 2011) argue that asexuality has the potential to be transgressive with regards to feminist and queer sexual politics – albeit one which is not yet fully realised (Milks, 2014). In doing so, they assume a top-down normative ‘goal’ for asexuality, but do not consider if asexual-identified persons themselves share this same vision of asexuality. Indeed, Scott and Dawson (2015), referring to these texts, argue that ‘marginalised in this analysis is the recognition of the lived experiences of asexual people as people’ (emphasis in original) and that there is a ‘conflation of a normative political position with empirical experience’.

Much of the existing empirical asexuality research is also problematic. For the most part, empirical research on asexuality has been conducted from within the paradigms of psychology and sexology. This research has been characterised by attempts to identify the prevalence of asexuality (Bogaert, 2004; Poston and Baumle, 2010) as well as identify unique psychological and physiological ‘characteristics’ of asexual persons (Prause and Graham, 2007; Yule et al., 2014). This has been accompanied by attempts to ‘account for’ asexuality by seeking some sort of biological or psychological base (e.g. Bogaert, 2004; Yule et al., 2014). As Przybylo (2012: 233) suggests, these preoccupations are reflective of a positivist impulse to somehow ‘know’ the ‘truth’ of asexuality. Others, however, have attempted to engage more meaningfully with the lived experiences of asexual persons. Scherrer (2008; 2010) and Carrigan (2011; 2012) have both conducted qualitative sociological research on asexuality, engaging with subjective insights and with what asexuality means in people’s lives. Both discuss the process of coming to identify as asexual, as well as the kinds of relationships asexual-identified persons (might) have, and the negotiations that take place within these. However, these studies could be said to present a somewhat singular focus on asexuality without any consideration of how other social relations of power (such as gender, class, ‘race’, disability, etc.) might mediate the experience. ³ It is my argument that an intersectional approach is needed here.

Intersectionality as a term was introduced by feminist legal scholar Kimberlé Crenshaw (1991) but the concept itself was developed by black feminists during the 1970s and 1980s who argued that black women’s lives were affected not only by sexism and patriarchy, but also racism, colonialism and capitalism, which in turn impacted upon how sexism and patriarchy were experienced (Combahee River Collective, 1977). ‘Mainstream’ feminism was thus challenged to think about how being a woman might ‘intersect’ with being black, or working class. Since then, intersectionality has expanded to encompass the idea that all identities and experiences are intersectional (Nash, 2008), although some have argued that this represents a colonisation of the concept by the hegemonically powerful (Alexander-Floyd, 2012). Within sexuality studies, there has also been increasing attention paid to how sexualities intersect with other axes of oppression and privilege (Taylor et al., 2010). It is from within this intellectual ferment that I argue that in failing to consider asexuality intersectionally, we are assuming a disembodied subject who is free to claim an asexual identity. This article is therefore an attempt to address the hitherto lack of engagement with the lived experiences and subjectivities of asexual-identified disabled persons identified as marginalised by Kim (2010, 2011), but also aims to expand the empirical sociological research on asexuality by introducing a consideration of intersectionality.

Constructing the Asexual Community

All participants framed the asexual community as generally open to and accepting of disability. Evidence was marshalled in favour of this; for example, Natalie ⁵ explained how she had ‘met a lot of aces [asexuals] online that are autistic, physically disabled, depressed, etc.’; others, like Lauren, drew on the positive reception she had received when she discussed her mental health problems on the AVEN forums. Participants went on to account for this openness, most commonly with reference to the idea that those in the asexual community knew what it was like to be ‘different’:

At AVEN, everyone knows that they are a minority in this world, so, I think that leads to them being more supportive and accepting of people with disabilities, both mental and physical. (Lauren, 23; asexual, aromantic)

Asexuals are on the edge of ‘typical’ and so they would have empathy to those who are atypical in other ways. (Erin, 29; grey-A, panromantic)

Jo specifically attributes what she sees as the increased empathy and sensitivity of the asexual community to the marginalisation that many asexual-identified persons have experienced in LGBT spaces:

I think a lot of people report not being received well by LGBT people and so it makes them … because we’re kinda newcomers to that group so we’re more aware of being perhaps mistreated or misunderstood. (Jo, 28; demisexual, panromantic)

Several other participants also made reference throughout their interviews to the hostility they had faced from LGBT communities – for example, Ryan felt that a kind of ‘Oppression Olympics’ was at play, where LGBT persons would compare what they perceived to be a lack of ‘asexual oppression’ to the assaults, murders and imprisonments suffered by LGBT populations. Erin also suggests that the LGBT community in some respects has more in common with ‘straight’ society – for example, she thinks that both LGBT and straight communities place a premium on sexual attractiveness, whereas ‘asexuals are more likely to see people as having characteristics outside of those that make them sexually desirable’. She suggests that this may lead to the asexual community being more open to those – such as disabled persons – who have been constructed as sexually undesirable by mainstream (sexual) society. This framing of the asexual community/asexuality in general as especially enlightened (since there is no sexual attraction to ‘get in the way’) was expressed by other participants:

I kind of like not seeing other people as objects, I mean, just not having that dimension to my thinking is nice – I kind of wish that that were more the case, like if you have that way of thinking then you kind of have to fight against it in a lot of contexts if you want to you know, treat, the person as a human being. (Jo)

These comments can be related to broader scholarship on how social movements construct a collective identity. Taylor and Whittier (1992) suggest that three interrelated processes are involved: drawing boundaries to construct a collective self and a collective other; developing interpretive frameworks through which meaning can be attributed; and deploying strategies to negotiate negative social definitions. We can see these at work in participants’ accounts. Boundaries were clearly drawn between both ‘straight society’ and LGBT communities. Asexuality was positioned as a marginalised group against the perceived dominance (and hostility) not only of heterosexuality but also LGBT-identified communities. This involved re-framing asexuality’s difference not as a deficit or a pathology, but as an actual advantage: it was seen to afford a clearer view, ‘uncontaminated’ by sexual attraction and resulting in more authentic interpersonal relationships.

Challenging the Construction

Given this construction of the asexual community as disability-friendly, I wanted to solicit participants’ views on the charges that have been made regarding the potential marginalisation of disabled asexual-identified persons through claims of health and normality. In positing this view, I was explicitly challenging participants’ construction of the asexual community. Participants responded to this challenge by skilfully reinterpreting my reading of the situation – for example, Natalie makes the distinction between asexuality being presented as ‘healthy’ (which she believes is what is happening) and asexual individuals being presented as ‘healthy’ (which she does not):

I have only seen the terms ‘healthy’ and ‘normal’ in regards to sexuality and not to overall health. Asexuality and its subsets is normal, as in it’s not unhealthy to be asexual. I don’t believe this says anything about each individual’s personal health. I think it’s just a reminder that there’s nothing to be afraid of when it comes to sexuality. (Natalie, 20; grey-A, heteroromantic)

Ryan and Helen both argued that the desire to be recognised as ‘normal’ is in actuality a request for the asexual community to be recognised as heterogeneous, like any other cross section of the public. Therefore, it would not follow that disabled persons would be excluded. Similarly, when I asked participants about their experiences of the disabled people’s movement, those few who had direct involvement rejected the suggestion that they were being marginalised as asexual persons. Kate, who was active in the UK disabled people’s movement, argued that amongst her activist friends and colleagues there was a growing awareness of asexuality as an identity or orientation, and increasingly care was being taken with regards to terminology. Kate’s experiences suggest that there may not be a blanket rejection of ‘asexuality’ within disability communities, as Kim (2010, 2011) fears, but that members may engage with discourse in more complex and sophisticated ways.

Links Between Disability and Asexuality

However, at other points in the interviews, many participants did express some tensions regarding their own understandings of their asexuality and disability on the one hand, and what they felt were the ‘official’ messages of the asexual community on the other. This was most evident when participants discussed the possible links between their disability and their asexual-identification. Perhaps surprisingly, many were willing to consider the possibility that their disability/illness and their asexuality might be connected in some way (although a couple of participants also rejected this outright). A variety of possible links were expressed – for example, Kate mused that her lack of confidence resulting from her mental health problems may have led to her repressing her sexuality as a young teenager. Similarly, Dawn suggested:

ME is still a mystery condition in many ways, as is clinical depression … A sudden loss of interest in all things (including sex) is characteristic of some mental problems, so I can’t say for sure that there is no connection. (Dawn, 31; asexual, heteroromantic but bordering on aromantic)

Erin and Jo both suggested that there may be a connection between their embodiment and their asexual identification:

I do have some kind of a vague theory as to where it all comes from, that being in constant pain from a young age that maybe I didn’t have the same connection to my body that other people do and maybe that had something to do with how I view other people’s bodies or physical interaction in general. (Jo)

Learning about my particular condition and that part of it – joint hypermobility – has a lot to do with lack of proprioception and weird sensory issues – well, sometimes I wonder if I have a simple disconnect between my mind and body, and that is why I don’t feel like my body wants to engage with anyone sexually. (Erin)

Erin and Jo’s accounts point to the role that the bodily experience of being impaired has played in their lives and how living in a particular body may have shaped their (sexual) subjectivity. However, this view was held in tension with the awareness that the asexual community was hostile to any links being made:

I think there can be a sticking point with the asexual community at large. They are frustrated with always having asexuality be ‘something wrong with them’ – whether it’s doctors or peers or partners, people are always presuming there is some kind of defect that makes a person asexual. So there is a bit of friction there. (Erin)

Similarly, Ryan also suggested that: ‘I think the view that asexuality is not related to physiological, hormonal or psychological problems is very deeply ingrained in the asexual community’. So while the asexual community might be open to members with a disability, this is perhaps conditional on not making connections between one’s asexuality and disability. Making such a connection would seem to undermine the dominant asexuality discourse – that asexuality is not caused by anything. This is a key constituent of what blogger Gaia refers to as the ‘Gold Star’ or ‘Unassailable’ asexual (The Queer Ace, 2013). Alongside an ‘endogenous’ asexuality, Gaia suggests that the Gold Star asexual would also have a binary gender identity, no history of abuse and would have always felt asexual, but would have ‘tried’ sex at some point. However, some participants challenged the idea that linking disability and asexuality had to be seen as dismissive or invalidating. As Kate put it:

I don’t think a link between asexuality and ASD [Autism Spectrum Disorder] would make anyone’s asexuality not ‘valid’. ASD asexuals would still be asexual, it just wouldn’t be for the same reasons as other asexuals. (Kate, 19; asexual, biromantic)

Jo expressed a similar sentiment:

The idea that your orientation doesn’t have any kind of cause has been created as the test of legitimacy – you know, the reason why being gay is legitimate is because you’re born that way and can’t do anything about it – not that something caused you to be a certain way. But for me, it’s legitimate … it doesn’t matter how that came about, it wouldn’t make it any less legitimate if it had a cause. (Jo)

Recognising that asexuality might have a biological or neurological or psychological basis for some people, or may be rooted in a particular experience of embodiment, did not mean that asexuality was therefore seen as something to be cured. Participants thus simultaneously resisted the medicalisation of asexuality by embracing asexuality as one more way of being-in-the-world, regardless of cause. What was important was that ‘asexual’ was a term that an individual felt they could identify with. In these accounts, the idea of what constitutes a legitimate sexuality (not caused by anything but equally not freely chosen) was challenged, but the sexological search for aetiology was also rendered irrelevant, since cause was only something that had a place in personal narratives, and did not hold wider significance. These accounts also remind us that while the dominant framing may be to resist the connection between disability/illness and asexuality, community members are not passive and are able to draw upon alternative ‘frames’.

Disability Mediating the Experience of Asexuality

All participants felt that disability mediated the experience of asexuality in some way. Most asexual-identified persons have to deal with their asexuality being attributed to some kind of pathology, but Ryan argued that a disabled person’s embodied existence could be used as ‘proof’:

As an asexual person with a disability, I definitely think I get the dismissal that it must be caused by some other factor, rather than being a genuine, pervasive and enduring sexual orientation, because people have clear ‘evidence’ to draw from. They believe that asexuality is caused by some deformity or physiological issue, they see that I have some kind of physiological issue, so they see a causal relationship … Although non-disabled asexual people still get that argument, it’s easier for them to argue against it because the ‘causal link’ is missing one of the major components. (Ryan, 24; grey-A, aromantic)

Bobby also suggests that scepticism, or dismissal, is exacerbated by the presence of disability:

[T]here might be … a bit more of – ‘well you already have this’ … for a disabled person, you go ‘it’s a disabled person’ and you might think that asexuality just comes along with that or something, or maybe their medication. Yeah, I think there is more scepticism toward a disabled person saying that they were asexual. (Bobby, 18; asexual, heteroromantic)

Here Bobby points to how disability often comes to define the totality of a person’s existence (‘it’s a disabled person’), so that all their actions come to be read through the prism of disability, including sexual identity. As O’Toole (2000: 210) puts it: ‘[for disabled people] it is presumed that any sexual expression is an expression of illness or disability’. Interestingly, in Bobby’s account, even though disabled persons are assumed to be asexual by default, this perhaps counter-intuitively increases scepticism towards disabled persons self-identifying as asexual because actively claiming an asexual self-identity would seem to contradict prevailing ableist norms of passivity and dependence. Appleby (1994: 24) explores this in relation to lesbianism and disability; she quotes one participant who suggests that you have to ‘be normal to be abnormal’, referring to how an ‘alternative’ self-identification only tends to be considered legitimate or ‘real’ if the subject is able-bodied. Here Tom Shakespeare’s (2006) concept of ‘labels’ versus ‘badges’ might be a useful way to help us think about this. Shakespeare uses these to refer to the distinction between disability being something that is ascribed (a label) and self-identifying as a disabled person (a badge). Similarly, we might apply this to asexuality: we could differentiate between asexuality as a label that is pinned on certain people and bodies, and asexuality as a badge that is worn (and with the agency that this implies). Going back to participants’ accounts, it might then be difficult to wear asexuality as a badge if it is already pinned on you as a label. More broadly, this also links into critiques made of the individualisation thesis – particularly the idea that we are not all ‘free’ to craft our own biographies (Brannen and Nilsen, 2005). Bobby’s account suggests that this right to be an ‘individual’ is perhaps provisional on one’s able-bodiedness.

In Steff’s case, she felt that her disability impacted upon her journey towards claiming an asexual identity:

I think my experience has been different and more difficult from non-disabled asexuals because I assumed my lack of interest in sex was because of my disability … I blamed my lack of interest in intimacy on my Asperger’s. If I did not have Asperger’s I think I would have suspected I was asexual a lot sooner. (Steff, 22; asexual, biromantic)

Steff also describes how her mother had talked to her as a teenager about how many people with Asperger’s do not have, or are not interested in sexual relationships. Shakespeare et al. (1996) identify socialisation and the ‘management of expectations’ as a barrier to disabled people being sexual; here we might also see it as a barrier to disabled people being asexual, in the sense of claiming asexuality as a positive identity. The above point that the assumption of asexuality leaves little room for agentic asexual existence may be seen to be reflected in Steff’s account. Steff also brings our attention to the fact that when negotiating an asexual identity, not everyone is subject to the same kind of pressures and expectations to be a sexual being. This challenges Scherrer’s (2008: 632) argument that coming to identify as asexual involves rejecting the pressure to be sexual: for some marginalised groups, being sexual has not been something that has been open to them. It also complicates accounts of the formation of an asexual identity – for example, Carrigan (2011) suggests that common to this process is a feeling of individual difference (estrangement from a sexualised culture), which is ultimately resolved through discovery of the asexual community, but I would like to suggest that this is dependent on an able-bodied subject for whom asexuality has not already been ascribed.