Using Pain,Living with Pain

Introduction

This paper is based on the early findings of research (Sheppard, 2017) ¹ into the experiences of pain for those who live with chronic pain and also engage in BDSM pain, or erotic pain. I chose to pursue this topic in order to explore a number of under-researched areas: particularly the intersection of disabilities, sexualities and BDSM but also the ways in which chronic pain can be a challenge and a disruption to the understandings of pain. The research project, taking cues from feminist disability studies methodologies (Morris, 1992; Garland-Thomson, 2011a, 2011b), used lengthy, semi-structured interviews with participants to build up experiential narratives of pain and to explore participants’ reasons for engaging with BDSM; how pain from their consensual activities impacted, and was impacted by, their chronic pain; and how they experienced chronic pain itself. I have examined the interviews using a critical narrative-analytic approach, whereby I identify points of commonality amongst them, in order to explore how these narratives reinforce or disrupt existing discourses around pain, disability, impairment and sexuality. Individual interviews with each of the ten participants took place over three separate occasions, giving time and space for explorations of the narratives and, more importantly, for participants’ reflection and response to the analysis I offered to them as a researcher. The research project also aims to further discussion in feminist disability studies around bodily experience of disability, particularly in relation to including the experience of chronic pain and chronic illness within crip theory.

Pain is a fruitful area for research; as such, this paper draws on, builds upon and questions specific threads within the existing literature: in particular, scholarship on the making and remaking of the self with and through chronic pain. Based in the area of disability theory, I use crip theory to unpick these threads and explore how a critical crip understanding of pain can illuminate the problem of thinking of chronic pain as just another form of pain. I have taken cues for a critically crip approach from Alison Kafer (2013), combining a critically disabled position and a critically queer position (McRuer, 2006). This paper is also rooted in feminist disability studies, which has previously called for disability studies to turn a critical eye on experiences of fragility, weakness and pain (Morris, 1992; Crow, 1996; Wendell, 1996, 2001). Moreover, drawing on the work of Margaret Price, I refer to ‘bodymind’ rather than ‘body and mind’ to acknowledge that:

mental and physical processes not only affect each other but also give rise to each other—that is, because they tend to act as one, even though they are conventionally understood as two—it makes more sense to refer to them together, in a single term. (Price, 2015, p. 269)

At the same time, I acknowledge the need to give equal weight to learning disabilities and cognitive impairments within feminist disability studies. When considering chronic pain, which often occurs alongside and within chronic illness, bodymind is of particular significance due to the effects of pain and fatigue on cognition (Chen, 2014), and thus gives space to explore how pain is not solely a ‘physical’ experience. I expand Price's (2015) original usage of bodymind to include able-bodymindedness, partly out of frustration with the phrase ‘able-bodiedness and able-mindedness’ as drawing too great a distinction between body and mind, but also to bring Price's phrasing further into crip theory when discussing normative constructions and ideals of ability.

This paper does not intend to reconceptualise wholly chronic pain; rather, it explores experience with a view to unpicking normative expectations of chronic pain, especially within disability studies. It also seeks to ensure that the voices of those living with chronic pain are front and centre in discussions, and argues through a feminist cripistemology of chronic pain that these lived experiences produce particular knowledge about chronic pain. The discussions with participants form a critical cripistemology of chronic pain in that it grounds a crip understanding—a political, relational situating of disability—in the experiences of chronically pained bodyminds and in the narratives of people living with chronic pain. Chronic pain colours the lived realities of my participants. From David, who reported that his chronic pain affects his perception of certain topics and events, to Julie, who ‘can enjoy life more with the limitations [of chronic pain and fatigue], rather than feeling [she has] to do everything and anything because [she] can’ (Julie, first interview), pain has become something from which they do not—can not—shy away, and something they do not want others to avoid. Instead, it has become a part of them and of their lifeworlds, affecting their phenomenological experience of self.

Chronic Pain

Before taking a closer look at the project and its findings, I will briefly define chronic pain. In medical terms, it is pain which lasts for a few months or longer (Merskey and Bogduk, 1994; Thomas and Johnson, 2000; British Pain Society, 2008; Conrad and Muñoz, 2010), and it may be seen as having a clear cause in terms of a diagnosed impairment or a healed injury but also can be seen as having no clear cause. Arguments abound as to whether or not some causes of chronic pain are based in mental illness (often referred to as ‘psychosomatic’), and whether or not a diagnosis of chronic pain serves as a form of ‘diagnostic dustbin’—a diagnosis to which the person is consigned by a doctor who is unable to diagnose a clear cause and serves as a dismissal, especially for those who experience ‘treatment-resistant’ pain. The medical framing of chronic pain (Conrad and Muñoz, 2010) influences wider social discourses (which participants both drew on and contested). In these discourses, chronic pain is generally understood as pain that lasts much longer than it should, not necessarily or expected to stop in the near future, and it carries with it suspicions of malingering or hysteria (Wendell, 1996; Thomas and Johnson, 2000).

Reported estimated incidence of chronic pain range from 11 per cent to 16 per cent of the population in the UK (British Pain Society, 2008; Baker et al., 2010; Price et al., 2012) and 20 per cent in the European Union more broadly (Baker et al., 2010). Overall, more women than men report experiencing chronic pain (Bendelow, 1993; British Pain Society, 2008), and the stigmatisation—and resultant treatment—of people experiencing chronic pain is often both gendered and racialised. Women's pain is more easily and frequently dismissed by others including medics (Bendelow, 1993; Wendell, 1996). Generally, women are cast as capable of enduring more pain (as assigned female bodies have the capacity to go through childbirth) but also as being more inclined to complain about minor pains and as tending towards hysteria (Bendelow, 1993; Hoffman and Tarzian, 2001). Men, on the other hand, are cast as more stoic and less inclined to complain but also less capable of enduring pain (Bendelow, 1993). Thus, when men report pain to doctors, they are more likely to be believed and prescribed drugs than women (Hoffman and Tarzian, 2001). People of colour of all genders are believed to be more resistant to pain, less capable of feeling pain, and more capable of enduring increasing pain (Trawalter et al., 2014; Hoffman et al., 2016). When people of colour report pain to doctors, they are more likely to be assumed to be drug-seeking or malingering (Nielsen and Fernandez, 2010). This stigmatisation affects access to, and quality of, care, as well as how willing individuals are to report pain. Thinking about chronic pain through a crip lens thus reveals—and acknowledges—not just how bodies are marked as normal or abnormal but also how conceptions of normality and abnormality interact with gendered and racialised bodies. It also makes plain that the causes of chronic pain are disparate and not neatly organised. My awareness of this, along with the wish to distance myself from a purely medical conception of disability and place importance instead on a political-relational model of disability, informed my decision not to specify a particular diagnosis when looking for participants; instead, I only asked that participants identify themselves as having chronic pain and engaged in BDSM practices that involved experiencing pain.

BDSM

BDSM here is an acronym standing for: bondage and discipline, domination and submission, sadism and masochism (Taylor and Ussher, 2001; Langdridge and Barker, 2007). It covers a wide range of practices and interactions, some of which include causing or experiencing pain in multiple ways and for different purposes. I chose to explore BDSM in this project (rather than chronic pain alone) because, acknowledging that context is important in how somatic sensation is interpreted (Bendelow and Williams, 1995), I felt the contrast between consensual pain and chronic pain might reveal something about the sensation of pain. This decision to research BDSM in relation to chronic pain was also informed by friendly discussion with individuals living with chronic pain who identified BDSM scenes as being welcoming to disabled people such as themselves. In exploring participants’ BDSM experiences, the research does not seek to further pathologise those who engage in BDSM or to present anything other than a respectful but critical (Deckha, 2011) account of their narratives.

In BDSM, pain is not necessarily the focus of the interaction, and different practices and practitioners place differing importance on pain, with many avowing it entirely (Langdridge, 2007; Deckha, 2011; Newmahr, 2011). Currently in the various UK-based BDSM scenes (there is no one single scene or unified group), there is greater emphasis on situating BDSM as power play and consensual power exchange (Langdridge, 2007; Langdridge and Barker, 2007) rather than situating it as consensual use of pain or violence. This disavowal may perhaps sanitise BDSM for more normative tastes and help reduce the stigma and pathologisation of being identified as a BDSM practitioner (Barker, 2013), but it also closes down discussions of pain in BDSM. With this in mind, my decision to refer explicitly to pain in BDSM play in the call for participants was twofold: firstly, to acknowledge that not all BDSM practices involve pain and not all practitioners experience pain (and, therefore, asking for ‘submissives’ may not have brought forward people who experience pain in their play); and, secondly, to acknowledge that, for some, pain is of equal or greater importance than consensual power play, and thus there is a need to discuss pain more broadly.

The Participants

The people who took part in the research had a variety of causes for their chronic pain; all identified themselves as disabled, and some had multiple disabilities. About half of the participants were in committed relationships, some polyamorous, some monogamous; some played with a range of others, regularly and one-off, while some played only within their relationships. The BDSM practices in which participants engaged were similarly diverse, from people who engaged in light spanking and primal play to those who engaged in piercing play and knife play. Several identified as switches, meaning that they played as both D/dominant and submissive, while others identified as solely submissive.

Participants ranged in age from their early 20s to their late 40s, with a gender split of four women, four men and two non-binary individuals. ² None identified as exclusively heterosexual. In general, they had higher-than-average educational levels, which has been observed as common amongst BDSM practitioners (Kleinplatz and Moser, 2006; Weinberg, 2006; Newmahr, 2011). At the same time, over half of the participants were unable to work and a few lived in relative poverty, which set them apart from the more typical BDSM-practitioner profile of tending to be relatively well-off (Bauer, 2007; Newmahr, 2011; Weiss, 2011). All but one of the participants was white, again holding to patterns observed by Staci Newmahr (2011) and others. Additionally, one of the biggest commonalities amongst my participants was their level of political, and what I might describe as a ‘loosely’ intellectual, interest in disability, often coupled with interests in gender and sexuality. This may have been a matter of self-selection, with participants’ political identities driving their willingness to take part in the project. Either way, participants’ political engagement affected the conversations I had with them and their involvement with the reflective aspects of our interactions. On the whole, participants were very willing to think critically and reflectively about the project and their own experiences.

Cripping Pain

Ableism and its partner, disableism, create disability (Goodley, 2014). Ableism is the social structure of, and preference for, non-disabled bodies, while disableism is the active expression of this by individuals. An example of ableism is the expectation that ‘normal’ bodies come with two functioning legs and two functioning arms; its active expression—disableism—manifests when, for example, a person using a wheelchair is verbally abused for using public transport. Ableism is tied to normativity. In the concept of the ‘normal’ body, functions and capabilities are all measurable; from height and IQ to the age for the onset of puberty, they are plotted in terms of frequency to form a bell curve whose middle range can be described as ‘normal’ (Davies, 2006). Normativity arises when this description moves beyond simple numerical description and a value judgment is assigned to those who fall outside of the ‘normal’. For instance, while a person with an extremely high IQ might be lauded, a person with a ‘subnormal’ IQ experiences discrimination and exclusion—as well as institutionalisation, forced sterilisation and early death (Carlson, 2005; Waldschmidt, 2005; Yates, 2005; Kafer, 2013; Hirvikoski et al., 2016).

These two concepts—ableism and normativity—are a part of crip theory, a theory of disability that describes systems of compulsory able-bodied and able-mindedness, or able-bodymindedness. The concept of compulsory able-bodymindedness combines the concept of compulsory heterosexuality (Rich, 1994) with ideas rooted in disability communities (McRuer, 2006; Kafer 2013). It posits that ideals of the able bodymind are intimately tied together with ideals of heterosexuality; thus, the heterosexual bodymind must also be non-disabled, while the disabled bodymind is inherently queer.

While there is little space for pain in earlier social models of disability, ³ crip theory, together with notions of normativity and ableism, leaves space for examining emotions, somatic sensation, sexuality and sexual activity (Rembis, 2010; McRuer and Mollow, 2012; Kafer, 2013). Unpicking notions of ‘normal’ sex and ‘normal’ bodies can be done by exploring notions of pain: how pain itself is understood as necessary but unwanted, and how pain is constructed in terms of ‘normal’ and ‘abnormal’ experiences and reactions. This relates to feminist disability studies not just because the majority of those living with chronic pain are women (Hoffman and Tarzian, 2001; British Pain Society, 2008) but also because it reveals the social constructions that underpin understandings of proper bodily function and control. As our increasing ‘understanding [of] our bodies as containing a matrix of referenced pathologies deviat[es] from narrow (and, ultimately, fictitious) norms of health’ (Mitchell and Snyder, 2015, p. 39), this research has ramifications for scholarship on bodies and contributes to debates about how neo-liberalism shapes bodies as inefficient, debilitated and in need of improvement (ibid.; Shildrick, 2015).

To begin with, if we take the assumption, based in Elaine Scarry's (1985) work, that pain is outside of language, we can see that pain is constructed as a dehumanising experience; the body in pain is considered no longer human (Sheppard, 2014). At the same time, as being able to both rationalise and describe pain is a key signifier of a fully formed human, we might consider experience of pain in and of itself as a key signifier of humanity (Bourke, 2011, 2014). The fully formed—i.e. normal—human is understood as having the language skills and knowledge of appropriate words with which to describe their experience, particularly once the urgency of a new pain has passed; the normal human can bring their experience within language through metaphor and simile, even if that language is clichéd and restricted. However, this understanding of humanity is at once normative and ableist; it reflects a world view in which an able bodymind is both the ideal and the norm (McRuer, 2006; Kumari Campbell, 2009; Kafer, 2013; Goodley, 2014)—what McRuer (2006) calls ‘systems of compulsory ablebodiedness’. This expectation and ability of putting pain into language—to contextualise pain and make it accessible to others—creates a normative understanding of pain as further relegated to the animal and the abnormal, and it is precisely with this normative understanding that all of the participants in my study, living with their chronic pain, struggled.

Reading chronic pain through a critically crip lens (Kafer, 2013) and thinking through the social structures of compulsory able-bodymindedness as they apply to pain further expose these normative structures. In the normative discourse, pain is animal and dehumanisming and, therefore, one cannot and should not live with it. A body in pain is a body that suffers, and this suffering must be stopped; when pain relief does not work, it is normatively considered perfectly reasonable at least to consider ending the life of the body in pain (Edwards, 2001; de Wolfe, 2002). For Julie, one of the youngest participants, the assumption that her chronic pain means that she must always be suffering is an uncomfortable one; in her words, ‘I experience pain, I try not to suffer from it, especially when it is inflicted through choice’ (Julie, third interview). Her statement, and the experience behind it, counters the commonly held view that pain is something with which one cannot live or welcome.

From this ablest perspective that pain and life are mutually excludable emerges the assumption that a life with chronic pain is, to use Fiona Kumari Campbell's (2009) terminology, an ontological impossibility. The ‘abnormal’ disabled bodymind is considered an abject one (Kumari Campbell, 2009) to the extent that this equating of pain or disability with intolerable suffering is often the argument underlying the ‘need’ for euthanasia (Kafer, 2013). All the participants in this project shared experiences of being treated as an abject object, particularly when it came to expressing pain or revealing their disability. They described experiences of having been the object of disgust, of having value judgments made about them, and of being treated as ‘less’ than human—as inhuman. Becoming and being abject is a complex experience to draw out of participants, as being the object of disgust is uncomfortable to recall and also opens one up to the possibility of further abjection, especially if one does not then perform a normative response to abjection (which I discuss in the next section).

Pain is commonly socially constructed as an unwanted, aversive sensation (Patsavas, 2014), especially when considered a risk to bodily integrity; therefore, people are expected to reject pain. Experiencing pain is associated with injury, wounding and the escape of bodily fluids (particularly blood but also tears). The need for bodily containment is echoed in discourses of ‘leaky’ bodies, particularly bodies that menstruate and incontinent bodies of the very young, the very old and the disabled (Liddiard and Slater, 2017). Failure to contain leaks—i.e. failure to keep uncontrollable leaks private—is incompatible with ‘proper’ bodymindedness and is read as a failure of proper self-control. These discourses also blame leaky bodyminds for not taking proper advantage of the myriad (commodified) preventative and containment measures provided in neo-liberal societies (Patsavas, 2014). The leaky bodymind is to blame not just for being leaky but also for failing to stop the leak.

Participants not only described the pressure they feel to avoid discussing their pain but also to control their expression of pain (this is something I will return to shortly). They described how they were aware that pain is normatively considered a disgusting object (even if they did not quite use these words) constituted by the subject ‘through the act of being disgusted’ (Tyler, 2013, p. 24). This constitution becomes habituated through repetition; pain is equated with the disgusting, awful and horrifying, and the more it is rejected, the more disgusting, awful and horrifying it becomes. However, with chronic pain, which has no obvious external cause and becomes a part of the phenomenological self, when others react with disgust, it is as though they are reacting with disgust towards the individual with chronic pain. This is especially the case when combined with wider ableist social structures that reinforce the ‘better dead than disabled’ message underlying ‘sympathetic’ statements along the lines of ‘I wouldn't be able to cope if I were like you’.

Speaking of Pain

The research participants saw their pain as a part of what marked them as different. Many also spoke of the conflict that arises between being in pain and how they are expected to perform it. For instance, participants described how they were expected to discuss their chronic pain and present it to the gaze of others, particularly in the presence of medical and rehabilitation professionals but also to friends and family. They described how, at the same time, they were expected to keep silent about their pain: how discussions of chronic pain are unwelcome if they discomfort the listener, even if that discussion comforts the person in pain. Participants also noted their awareness of listeners who do not share their experience of chronic pain not fully comprehending their stories of, and relation to, pain; they might hear the words and even be sympathetic, but they have little conception of how the speakers live with chronic pain. As Charlie explained:

People don't like to think of you in pain and not be able to do anything about it. People don't like to think about the concept of pain in case they might experience pain. You know, it can be very … people that care about you might want to do something about it, people that are a bit more self-centred might be, like, “Oh gosh, I can't deal with this person in pain, it just makes me think about pain, I don't want to think about pain”. (Charlie, second interview)

For several participants, experiencing listeners’ discomfort added to the dehumanising experience of chronic pain. In these situations, participants became aware that making their pain and disability visible opened them up to being encountered as objects of horror and abjection (Kristeva, 1997; Shildrick, 2009; Tyler, 2013), as well as to condemnation for failing to properly control their pain (Patsavas, 2014). My participants’ narratives indicate that chronically pained or not, we need to re-evaluate (perhaps cripping) the assumption that pain is something we can not put into language, and ask why communications of pain are so difficult to hear and why we reject the notion of ‘living with pain’ so quickly and absolutely. As the lived experience of a chronically pained bodymind comes into focus only through the discomforting process of listening and actively hearing crip narratives, addressing these questions is critical to supporting the development of a cripistemology of pain.

The presumption of the ontological impossibility of pain and disability, as discussed earlier, leads to a bind for people living with chronic pain. In order to regain their humanity, they must speak of their pain: to constrain pain in words and rationalise it through language restates their humanity in the face of its dehumanisation. To speak about and of pain is also necessary for accessing both relief from it and support systems from medical professionals, patient groups, friends and family (Hoffman and Tarzian, 2001; Nielsen and Fernandez, 2010). Yet, despite this need to speak, there is a great deal of social pressure to remain silent and minimise discussing or complaining about one's own chronic pain. Speaking of chronic pain often draws assumptions that the speaker is exaggerating or malingering; after all, according to normative discourse, no one can actually live with chronic pain, let alone speak about it. According to this rationale, which recognises pain most clearly in cries and sounds rather than in words and scaled numbers, someone who is truly in so much pain is unable to discuss it. Charlie's experience exemplifies the paradox of speaking about living with chronic pain: Charlie does not use emotional language when speaking about their chronic pain, and, as a direct result, they have encountered discomfort in others. By not being ‘hysterical’, Charlie has been made to feel as though they are failing to properly react to pain. Moreover, Charlie's ability to discuss their pain calmly in a ‘rational’ or ‘unemotional’ manner leads to people tending to disbelieve them. In speaking about their pain, nobody believes that Charlie is living every day with the extreme levels of pain about which they speak.

Julie, for whom both pain from BDSM and chronic pain are distinct from suffering, is discomforted by others’ pity and her awareness of their distress when she is visibly in pain. She is also frustrated when pity and distress cause others to fear that they will increase her pain and perceived suffering and, thus, others from interacting with her as she (and possibly they) would wish. This has led Julie to limit her engagement with others who have reacted to her pain in this way, especially when she cannot mask her pain. While they may not go as far as to think that Julie should be euthanised, they may identify her chronic pain and their perception of her suffering as irredeemably negative—as an ontological impossibility—and a life with chronic pain as something they cannot and do not want to imagine; in which case, Julie becomes an object of abjection, horrifying even to the observer who may not wish to be horrified.

Using Pain

Most of the participants began exploring kink as young adults, and three located their interest as definitively predating the start of their chronic pain. Although he did concede that pain occasionally impacted his play, Edward was the only participant who identified his kink practice as wholly separate from his experience of chronic pain. This is not to say that the remaining five participants became interested in kink directly because of their chronic pain; rather, they began living with chronic pain as young adults and were only beginning to consciously and deliberately explore their sexual selves at the time of our interviews. Charlie put it best in explaining that they felt they probably would have been interested in BDSM had they not had chronic pain, but they also could not say for certain exactly what their sexuality would have been like without chronic pain. Susan Wendell (1996), writing about chronic illness, disability and identity more broadly, similarly explains that she could not imagine herself without her illness because it affected every aspect of her lived experience. That said, all participants said that their chronic pain had impacted their play pain (i.e. the pain they consented to experiencing through their BDSM activities), and most of them spoke of the impact that their play pain also had on their chronic pain. Participants’ narratives of these impacts had multiple broad points in common, in which I have identified three cripistemological understandings of what pain is or does for the chronically pained bodymind. ⁴

Firstly, play pain and BDSM have affected how participants feel about their bodily selves, including as related to their chronic pain. Natalie, for instance, described how BDSM gives her back the self-confidence she feels is taken away by pain and fatigue, by providing a space to engage positively with her body in ways that make her feel strong, capable and sexual to herself as well as her long-term monogamous partner. Fatigue and pain are almost inseparable to Natalie, who has to spend a great deal of time and energy planning how to balance her limited supply of energy with the activities she needs or wants to do. BDSM reminds Natalie of her body's capacities rather than of its incapacities; in ‘taking’ a spanking, in enduring the acute pain it causes, Natalie is able to re-establish her body as capable. Natalie also sees kink as a subversion of pain; in choosing to experience pain through BDSM, she is choosing to bring pain in and make use of it for her own ends, which is something she cannot do with her chronic pain alone. In other words, BDSM for Natalie is a process of reclaiming her bodily self. Charlie also spoke of BDSM, especially piercing, as a way of reclaiming their physical body that, while not immediately understood as pleasurable, is nonetheless positive and re-establishing of selfhood. The normative understanding of pain as dehumanising and the desiring of pain as perverse (Conrad and Muñoz, 2010) counters and precludes the possibility of wanting and using pain for regeneration. However, the lived experiences of my participants tell a different story: in finding through BDSM a space for the re-establishment of the self, participants position pain as self-remaking rather than self-destroying. Through a crip understanding of pain, pain can be perceived as being both (and neither) reconstructive and destructive when experienced by the same bodymind within the same experience.

Julie also sees BDSM as a space to re-engage positively with her bodily self; BDSM ‘has allowed [her] to find a place to move away from the all-encompassing pain/disability and just be [herself]’ (Julie, second interview). Julie started practising BDSM after she came to live with chronic pain, and her interest in play pain and submission developed alongside her new identity as a person living with chronic pain. She feels that through BDSM, she is ‘starting to understand [her] body beyond the pain, beyond the chronic pain … beyond the pain even if it's been induced even in a kink-type setting’ (ibid.). BDSM gives Julie a positive experience of pain and of her body with chronic pain, which she had experienced and continues to experience as overwhelmingly negative. Her choosing and desiring pain counters the normative expectation that one should reject and seek to lessen pain. Julie's explicit decision to use BDSM as a way to experience her bodymind is not about embracing pain as positive, but about finding a way to experience pain that does not rely on rejecting or avoiding it in her activities.

The second broad point of commonality amongst the participants’ narratives is that BDSM pain serves as a distraction. Charlie spoke about how their mood worsens when their chronic pain is particularly bad, while BDSM serves as a focused distraction away from being in pain. Like acute pain, chronic pain can reduce the lived world to pain alone: to a state of isolation where all a person is able to focus on is their pain and their immediate needs (Scarry, 1985; Thomas and Johnson, 2000; Langdridge, 2007). Charlie finds that BDSM play, with its pain coming from an externally identifiable source in the form of their play partner, forces them to think beyond their chronic pain: only a new pain is able to break them through chronic pain. Consensual BDSM pain serves a similar purpose for Edward, who feels that the ritualised play in which he and his Mistress engage takes his mind away from his chronic pain.

Catherine and David, who both identify as autistic, also described how BDSM serves as a focusing distraction from chronic pain. Catherine said how she feels that pain from BDSM and ‘rough’ sex provides a clearer, stronger sensation, akin to stimming (a practice of performing repetitive movement or making repetitive sounds, not exclusive to autistic people but frequently identified as a ‘trait’). While sex without BDSM is possible for her, Catherine said that this stronger sensation enables her to connect more with her partner, especially when other sensations compete for her attention, and so she feels more engaged and satisfied by sex with BDSM. David described a similarly clear somatic sensation from pain, as well as a sense of relief from it, with BDSM.

This sense of relief also may be understood in terms of another broad category in which some participants perceive BDSM pain as having an impact on their chronic pain. Natalie said that orgasm from sex gives her a measure of pain relief. BDSM gives her stronger orgasms; therefore, even if it might be more tiring, sex with BDSM gives Natalie more effective relief from pain than sex without BDSM. Charlie also explained that ‘in any sort of kink or sex kind of play … sometimes [they]'ve been able to, uh, extend the period between using analgesia because of the impact of the endorphins, and just, whatever’ (Charlie, first interview). Charlie identified flogging and needle play in particular as part of what they call ‘desensitisation work’ (Charlie, second interview), whereby having pain effected in a specific bodily area helps dull the sharper sensation they feel in that location due to nerve damage. For Charlie, desensitisation work is a methodological, carefully thought out, purposeful use of BDSM pain that helps them live with chronic pain. Charlie's efforts to control the disabled bodymind through pain recalls Dawn Reynolds’ reading of Bob Flanagan's art:

through various tortures, Flanagan was able to gain physical and psychological control over a body that was frequently out of control. Flanagan's self-imposed restrictions and degradations served as an entertaining way to keep his reckless, unpredictable body in line. These restrictions, Flanagan argued, poked fun at the seeming arbitrariness and cruelty of his illness. (Reynolds, 2007, p. 43) ⁵

All three of the broad commonalities I have identified can be understood as processes of speaking back to chronic pain and of re-engaging with pain in ways that are useful, sometimes pleasurable, and always carefully controlled and consensual. While BDSM might be read as a means by which people living with chronic plain reclaim ‘normal’ humanity through rationalising pain, the structures of normativity make it impossible for my participants as disabled and chronically in pain to ever reach what is conceived as ‘normal’ ideals of able-bodymindedness. Several of the participants felt that being disabled made it easier for them to engage in non-normative sexual practices because they are already cast as ‘abnormal’, and they also expressed having no desire to become ‘normal’. The interviews with my participants revealed that just as the non-disabled cannot perceive of themselves as disabled (Wendell, 1996; Kumari Campbell, 2009), the disabled cannot perceive of themselves as non-disabled, except in the past tense. Being ‘normal’ is not just impossible but also unnecessary for my participants—and embracing ‘abnormality’ is not just possible, it is also necessary for them.

Remaking

If we understand pain as an attack on the phenomenological self (Scarry, 1985;Langdridge, 2007), and thus an experience that requires a remaking of the world and of the self, we need to consider how the world is remade within chronic pain. If chronic pain is assumed to work like ‘normal’ or acute pain, or assumed to work along normative lines, it requires us to have our world constantly made and remade. I would argue, however, based on the narratives of my participants, that chronic pain is experienced rather differently—not simply as an imposed, external experience. This is because those living with chronic pain are so often told that the cause of their pain is ‘internal’—that it is caused by their own (in)action—and therefore the cure is similarly located in individual behavioural change. Thus, chronic pain becomes something with which one must live; chronically pained people must face living with chronic pain as an ontological possibility.

Chronic pain does not require constant remaking of the world and of the self because it creates a new state of being: one becomes a person who lives with pain rather than a person or body in pain. The normative conception of pain as acute and temporary does not fully convey this. My participants found that chronic pain made it impossible to maintain and live with an understanding of pain as a state of inarticulate, dehumanising distress; they desired to find their selves again, to counteract pain and to re-establish their human selves—simply put, to live actively again. Catherine and Julie have both found that, over time, their chronic pain has not lessened; however, it draws less of their focus, and they are able to continue on (as indeed they must). Living with chronic pain has meant that they have had to continue to act in ways that are ‘normal’, partly to avoid becoming objects of horror and abjection (Kumari Campbell, 2009; Shildrick, 2009; Tyler, 2013) but primarily to balance being in pain with functioning. They had to find ways to experience the sensations of life and self, even as pain reduced their capacity to engage with the world; to put it bluntly, they had to make pain a part of their lives so that they could have lives. However, as Tobin Siebers (2008) points out, passing as normal is exhausting, and BDSM gives them a space to embrace abnormality, to experience pain and engage with their embodied selves and somatic sensation.

According to my participants, change experienced in relation to chronic pain is not wholly negative, although it almost is at first. They described how when acute pain becomes chronic pain, one is forced to confront the prospect of both a painful present and future as a chronically pained person. At the same time, participants also shared how as they became used to their painful bodymind, they experienced positive changes in their lifeworlds. Due to a change in how they engage with various practices and in becoming more self-aware, Charlie finds BDSM more enjoyable now as a person living with chronic pain. Charlie was not the only participant who said that the self-awareness required to engage in BDSM—i.e. to be aware of one's bodily limits, weaknesses, capabilities and desires—also helps them to live with their chronic pain.

This notion of control of the self, the body and of pain has been particularly notable in my interviews, with participants relating how they find ways not just to regain a sense of control but also to regain their sense of self through exercising control over how they live with their pain. The world is at once shattered and held together through control. For several participants, their engagement with BDSM has been a way of engaging with pain and with their bodily selves in a controlled environment, and the act of receiving pain in a context they can control has allowed them to connect to the somatic sensation of pain. Forcing them to engage with their bodies and with their experience of the world through pain, kink pain helps them welcome their chronic pain rather than fight to keep it out. Kink pain is still pain, but it is something they can choose to experience and to which they can call a stop when they have had enough. For others, kink pain does not replace so much as overlay chronic pain; in its urgency and acute sensation, it pulls attention away from chronic pain. The reshaping of context wherein acute pain is experienced in a controlled situation gives them control over pain and allows them to welcome sensation again.

Conclusions

Pain is not as straightforward as an attack on the phenomenological self that unmakes one's lifeworld. It is not as straightforward as somatic sensation to which one reacts or ignores. A critical crip reading exposes normative, ableist structures of pain as casting as ‘abnormal’ those who experience chronic pain, those who choose to experience pain in erotic contexts, and those who actively engage with their pain by welcoming it in and choosing more over less pain. Normative and ableist social structures stop us from considering pain in terms other than as they apply to the narrowly defined margins of being a ‘normal’ human. They stop us from listening to those who speak of and about being in pain. They make the person in pain abject, monstrous, other, unable to regain their humanity through engaging with pain. The phenomenological self cannot be remade as human without pain, but nor can it be normatively human with pain.