The pleasures of care

Abstract

In Western culture, pleasure and caregiving seem mutually exclusive. However, in the author’s previous research with people with disabilities and their partners, caregiving emerged as a primary way in which disabled/nondisabled couples engaged in intimacy. Rather than being a drain on the relationship, physical/emotional care brought the couples closer. This article revisits the author’s ‘pleasures of care’ model, focusing on new narratives that explore how the performance of care and ‘technologies of care’ facilitate sexual pleasure. She argues that care is typically experienced as pleasurable when caregiving and receiving have consciously and explicitly been made strange, negotiated, and reframed. In the first section, the author explores how communication can lead to reframing, and how couples that achieve this may also experience a heightened attunement, parallel to the sense of oneness sometimes experienced in sexual encounters. In the second section, she explores how making care ‘strange’ can also be an aspect of kinky sex and sex involving caregiving apparatuses, what she calls the ‘technologies of care’. In relationships involving BDSM, the performance of care can be an integral part of sexual play. ‘Technologies of care’ can be used to facilitate sexual pleasure and contact especially, but not exclusively, in kinky relationships. Rubber gloves, tens units, and Hoyer lifts are all ‘technologies of care’, but they are also the accoutrements of kinky (and some ‘vanilla’) sexual play. By detailing the ways in which care facilitates sexual pleasure, the author hopes to show how the ‘pleasure of care’ can radically rewrite the meaning of disability and power.

Keywords

attunement BDSM care disability pleasure

We carry on a constant, often hardly conscious, corporeal conversation regardless of our other pursuits and preoccupations. Without my disability to throw us together thus habitually, our bodies might spend their days racing separately from one activity to another, coming across each other only in time to tumble into sleep. (Mairs, 1996: 54)

Even though there are many people who act as a caregiver for their partner with a disability, we do not recommend that you solely rely on your partner as your primary caregiver if at all possible. It not only is incredibly stressful on your partner and your relationship, but it forces you both into a dual relationship that gets very frustrating … Over time this dual relationship can lead to a shift in how your partner and you view each other, your sex life, and your relationship. (GimpGirl Community, 2011)

Introduction

In Western culture, pleasure and caregiving seem mutually exclusive. Providing care to a person with a disability is portrayed as emotionally, physically, and financially stressful; whereas, receiving care is associated with dependency, weakness, and impotence. Neither of these positions is particularly sexy. However, nearly a decade ago, when I started talking with couples in which one partner has a physical disability and the other partner is nondisabled – what Bethany Stevens refers to as ‘interable’ couples¹ – I was surprised to hear how frequently care was positioned as the source of heightened intimacy and sexual pleasure. Rather than being a drain on the relationship, physical/emotional care brought the couples closer together. As the epigraph above by Nancy Mairs suggests, a primary way that care facilitates such intimacy is the bringing together of bodies that it routinely requires. This increased physical closeness was often mentioned as an advantage of interable love in the focus group interviews I conducted, but participants also emphasized that negotiating care and disability led to better communication, more playfulness, and more creativity than what they observed in their nondisabled peers. That research led me to develop the ‘pleasures of care’ as a model to account for sexual pleasures – both physical and emotional – that can come from providing and receiving care in interable relationships (Rainey, 2011).

As the second epigraph makes clear, however, the ‘pleasures of care’ run counter to the conventional wisdom and advice provided to people with disabilities (PWD) about mixing caregiving and sexual relationships. Indeed, Tim Rose, co-founder of The Rose Centre for Love, Sex and Disability, shares:

For a long time I was told by family members, and, you know, friends, and doctors and whoever, that I should never, ever, ever let my romantic partner do any sort of physical care because I am quadriplegic and I do require quite a high level of physical care.

Allowing your partner to be your primary caregiver is considered dangerous because research on caregiving burden has shown that it can lead to health problems for the nondisabled partner, resentment, abuse, and divorce (Mutch, 2010). From a disability rights perspective, mixing care and relationship is also problematic because it appears to undermine efforts to promote ‘independent living’ and self-sufficiency for PWD. Considering the potential disadvantages of combining caregiving and intimate relationships, more research is needed to understand why care seems to facilitate sexual pleasure and intimacy for some couples and not others.

The present research attempts to offer some possible answers by revisiting my ‘pleasures of care’ model, focusing on new narratives that explore the potential sexual pleasures of care. Like the work of other scholars concerned with the desexualization of PWD, my findings suggest that disability may be sexually advantageous. For example, Alison Kafer (2012) suggests that impairments may be one of many aspects of identity – like hair colour or wit – that incites desire. Other scholars assert that disabled people make better sexual partners because impairments force heightened communication and the exploration of non-genital sexuality (e.g. Siebers, 2011). However, the issue of care has not been adequately addressed in previous work on disability and sexuality. On the contrary, care often haunts these efforts to make disability sexy. My work on the ‘pleasure of care’, however, suggests that rather than only being a barrier, the need for care can be reframed to be an erotic and satisfying aspect of sexual relationships.

In what follows, I use a qualitative, multi-method approach to explore the pleasures of care. First, I draw on my original focus groups interviews² with people with physical disabilities and their nondisabled partners, as well as new, recently conducted focus groups with people with disabilities in a current relationship and/or nondisabled people currently in intimate relationships with PWD. Focus groups are particularly suited for discussions about sex and sexuality, especially when attempting to ascertain group attitudes and norms (Frith, 2000). In the recent focus group interviews, nine people participated in three focus groups.³ Two couples participated together, whereas the remaining participants joined the groups alone. A wide range of impairments was represented, including physical disabilities such as arthritis, diabetes, muscular dystrophy and cerebral palsy, and emotional impairments such as depression/anxiety. All but three of the participants were in ‘interable’ relationships. Such diversity was intentional. My previous research on caregiving and sexuality included only interable couples dealing with physical disabilities that impacted at least one activity of daily living. In this study I wanted to test how care was experienced, pleasurably or not, in a wider range of PWD and intimate relationships.

This study also draws on the vast amount of writings by PWD about sexuality that have been published, primarily in social media like blogs, since my book was published. Although there has been a slight increase in the amount of attention to sexuality and disability in the mainstream media in the last several years, people with disabilities remain largely invisible. However, as social media and electronic publishing has become more accessible, people with disabilities (and nondisabled people involved in relationships with PWD) have combatted this public erasure through self-publishing. Many electronic magazines for PWD have regular ‘sexuality’ columns (e.g. Disability Horizons), and a number of individuals publish articles about love, sex, and disability on personal blogging platforms. In almost all these cases, the authors or their partners are PWD, sharing their experiences and wisdom for other couples experiencing impairment. These publications are a rich data source for understanding how PWD and their partners experience care in their relationships.

My final source of ‘data’ is my own experiences with disability and caregiving with my late partner, Max, who had Multiple Sclerosis (MS). He used a wheelchair and often needed help with many activities of daily living, and I was his primary caregiver. For this particular project, I have drawn specifically from my experiences of performing care as part of our sexual identities as a Dominant/submissive couple. Autoethnography is always a risky venture for researchers, but considering my relative silence on my own experiences and how they shape the theory and knowledge I produce, my stories are an important addition to this research. The stories I share are meant to add to the diversity of data collected, but also to account for how the ‘pleasures of care’ were shaped by my own intimate pleasures of caring for Max.

Rather than denying the central role care plays in sexual pleasure, I argue that we must embrace its possibilities. Overall, I make the claim that care is typically experienced as pleasurable when caregiving and receiving have consciously and explicitly been made strange, negotiated, reframed, and even performed through open dialogue and communication. In other words, the pleasure of care is a possibility, but one that is dependent on being made obvious, or ‘made strange’, by moving care from familiar and routine to exotic and sexy. This article explores two related, but mutually exclusive methods of making care strange: communication and kinky sex. In the first section, I explore how communication can lead to reframing, and how couples that achieve this may also experience a heightened attunement, parallel to the sense of oneness sometimes experienced in sexual encounters. In the second section, I explore how making care strange can be accomplished with sex involving caregiving apparatuses, what I call the ‘technologies of care’. In relationships involving the eroticization of power and sadomasochism, the performance of care can be an integral part of sexual play. ‘Technologies of care’ can be used to facilitate sexual pleasure and contact especially, but not exclusively, in kinky relationships. Rubber gloves, tens units, and Hoyer lifts are all ‘technologies of care’, but they are also the accoutrements of kinky (and some ‘vanilla’) sexual play. By detailing the ways in which care facilitates sexual pleasure, I hope to show how the ‘pleasure of care’ can radically rewrite the meaning of disability and power.

Reframing and attunement

All intimate relationships involve care. In order to maintain a loving relationship, partners must understand each other’s limits, support each other’s hopes and dreams, and work together on a myriad of daily and mundane tasks. PWD and their partners provide these types of care to each other, but because of impairment, their execution of couple care often looks and feels different. Mopping the floors may first involve helping the disabled partner into his wheelchair and attaching the mop handle to an adaptive hand cuff. Sex may involve undressing a partner, not only because it can be sexy, but because he or she may not be able to undress alone. In each of these examples, the adaptive care task could be seen as a barrier to intimacy, and for some participants in my research, particular aspects of care were incompatible with sexuality. For example, Chuck, the nondisabled partner to Alana T, explains:

There are certain kinds of care that, to put it bluntly, will mean we’re not going to have sex tonight, I mean, if I have to help Alana with her bowel program we’re not going to have sex just because these things are not correlated for me in any way.

For Chuck, caregiving associated with toileting was a barrier to sexual intimacy, and this is one of the reasons Chuck and Alana insist on having a personal care attendant for Alana.

However, personal care was not universally experienced as a barrier in my research. Sabrina, who has MS, and her nondisabled partner, Adam, explained that Adam has had to catheterize Sabrina when she is unable, but they experienced this as an event that led to an increased sense of intimacy. Sabrina says, ‘I think truly it makes you closer than it does other couples because you have to deal with things that you’d never have to deal with.’ Sabrina and Adam point specifically to a higher level of trust and communication, earned from performing personal care, which contributes to their overall levels of intimacy. Describing a sexual encounter with a man who asked to help bathe and care for him after sex, activist and author Andrew Morrison-Gurza (2014a) says:

The sex was probably among the best I have ever had, but that wasn’t what I will remember. The real intimacy came afterward, when he asked to be let into my world of leg bags, washing and care … By agreeing to help me with post-coital care and attempting to understand the realities of my disability, he was being more intimate with me than any one-night stand had ever been.

On a more humorous note, Dana Brown Ritter, the nondisabled spouse of Michael, who is quadriplegic, says:

I handled poop on my honeymoon. We did Michael’s bowel care routine in our little beach condo, and it stopped up the toilet and it overflowed and I stood in ankle-deep poop water. If that doesn’t seal the deal on a super-romantic honeymoon, I don’t know what does! I think I proved my love for my man, right there. (Ritter, 2013)

Ritter relays this humorous story as an example of her ability to deal with any mess, but it is also telling that she uses it as a way to display her love. It is a claim that resonates with me deeply. When Max and I were first dating, he had a bowel accident while sitting in his wheelchair at my semi-accessible home. I did not want to send him home, and I also wanted to send a clear signal that I was not deterred by bodily fluids, so I suggested that we clean him right then and there. This was much more difficult than expected as I did not own a shower chair, and only had a bathtub in a very narrow restroom. Getting Max undressed, lowered into the bathtub, cleaned, and, miraculously, out of the bathtub, dried, and placed in bed (no need to get dressed if we were just going to have sex!), took about two hours. Since it was one of the first times I really ‘handled’ his body, Max had to give a lot of instruction about how to lift, move, and work with his limbs, and I had to do deep and active listening, paying special attention so that I would not do more damage in my effort to ‘help’. It was difficult and gross, but also fun. Yes, fun. We laughed hysterically, and we talked and trusted at such an unusually intense level that we, literally, fell in love. We had sex that night, and many other nights after bowel or bladder care, and it was passionate, hot, and caring.

So what makes bowel and bladder care a ‘deal breaker’ for some and not others? The defining difference between those couples that experience care as burden/barrier and those that experience care as part of love/intimacy may be perspective. Allison, a disabled woman with chronic pain and arthritis, shared in a recent focus group:

I think for me a lot of it is reframing what care looks [like] … [For example], my partner would rub lotion into my knees and my back and my hips, and for a long time like I really just thought of it like a check-list, like I do this, and I take my Percocet … and this is what I need to do to get to bed. And, we had this talk the other day and he was like ‘when I do that, that is me showing my love for you because it is touching your body in a loving and gentle way’.

As Allison notes, she did not interpret rubbing medicated lotion into her knees, back and hips as part of their sexual intimacy until her partner explicitly connected such care to sexual intimacy. The care had to be reframed from something that ‘had to be done’, a chore, into a loving, intimate act. Now she views the rubs as ‘sensual massage’, and as a precursor to getting into bed together.

Communication is key to reframing care as part of – instead of as barrier to – intimacy. Open, honest, and constant communication was repeatedly cited as what ‘helps the relationship’ in my focus groups, and it is almost always central to the advice given in the self-published articles and books I analysed. For example, Andrew Morrison-Gurza (2014b) says:

One of the reasons that sex with PWD can be so much better is that in order to have it, you have to communicate, and I don’t just mean, ‘Harder! Faster! Ooh, baby!’ (although if that helps, by all means, be my guest). I mean you will have to ‘storyboard your sex,’ as I like to say.

Morrison-Gurza explains that each aspect of sex, including how to touch, where to touch, and what pleasure might look and sound like has to be set-up before and during the encounter. The explicitness is part of the erotics.

In addition to hot sex, such explicit, open communication can also facilitate high levels of attunement, which is typically defined as ‘the process of being relationally present and able to recognize the needs and the cues of another in the relationship’ (Jonathan and Knudsonn-Martin, 2012: 96). Couples that are able to reframe caregiving as an integral component of their intimate relationship described high levels of attunement, characterized by a ‘deep level of connectedness’ and reciprocity. Consistent with the research on attunement in intimate relationships, participants described emotional aspects of attunement, including ‘thoughtfulness’, ‘understanding’, and feeling cared-for. However, my participants also used more visceral, embodied language to describe attunement. For example, describing how their bodies move together, Alana K, whose partner is visually impaired, explains:

We’re often walking with him holding my elbow with his hand and he’s like slightly behind me, and we tend to be like that most of the time, especially if it’s at night and we’re navigating outdoor space or even indoor physical spaces that are not well-lit, we’re almost always linked in that way.

Describing their bodies as ‘linked in that way’, Alana expresses a form of attunement that is physical and embodied.

Similarly, Dominick, who has muscular dystrophy, uses the language of ‘opening myself up’ to describe allowing his partner to take on more and more of his physical care. Other participants talked about feeling very in-tune with their partner’s bodies, as the result of providing care over many years. The experience of touching through the act of physical caregiving, or the coming together of minds that is necessary to negotiate emotional or sensory caregiving, can create attunement through body knowledge. Indeed, attuned caregiving and care-receiving bodies can parallel the sense of ‘oneness’ sometimes felt in really great sex. Pleasurable caregiving requires that the carer suspends his or her physical and emotional self momentarily, in order ‘to be’ the care-receiver’s body or words. It also requires that the receiver open up to receive care, suspending notions of the fully autonomous self. This suspension allows an opening or entering into attunement. Once there, bodies move together like trained dancers. After years of helping Max transfer, dress, toilet, and shower, we were attuned. When he died, it felt as if I had lost part of my body, and in a way, I had. I had lost the feeling of our bodies in physical attunement.

Of course, caregiving does not always or inevitably lead to emotional or physical attunement. It can lead to a breakdown of mutuality and reciprocity, leading to abuse, abandonment, and divorce. Thus, blending caregiving and sexual relationships is not always advisable. To be clear, interable couples can have a healthy, meaningful sex life without incorporating caregiving. For example, Chuck and Alana, the couple I mentioned at the beginning of this section, use a personal care assistant for almost all of Alana’s daily care. This was important to both of them; for Alana, it increased her sense of independence, and for Chuck, it was important so that he would continue to see Alana as a sexual partner. So, the ‘pleasure of care’ should not be taken as prescriptive.

However, few of the couples I have talked with are able to afford personal care assistants (PCA). In the US, many people do not qualify for state-sponsored PCAs. Thus, a PCA is simply not an option. For these individuals and their partners, the ‘pleasures of care’ model may be a way care can be looked at differently. By explicitly reframing care – making it strange – it can become a tool for increased intimacy. The explicit reframing does take conscious effort, ample communication, and creativity, but for those that have been able to harness care as pleasurable, care can become an important source of attunement. In the next section, I look closer at a couple of ways care can be made strange in intimate relationships – through kinky sex play and the use of care technologies. Explicit communication and creativity in both of these examples re-craft caregiving and receiving, unleashing new pleasures.

Performing care: Roles, scripts and props

One way that some PWD and their partners have reframed care is to make it part of sexual play. In previous work, I have discussed ways in which showering and dressing have served as opportunities for sexual play (Rainey, 2011: 145). In this section I want to discuss another way care can be explicitly reframed in sexual play: as part of ‘kinky’ sex, including bondage/discipline, dominance/submission, and sadism/masochism (BDSM). Despite the surge of scholarship around BDSM, very little has been written about PWD involved in kinky sex. However, several participants in my recent focus groups discussed BDSM. In addition, BDSM was a significant part of my intimate relationship with Max. I was his full-time submissive, and the activities performed as part of routine caregiving to Max, including bathing, dressing, and toileting, were explicitly part of my role as his submissive. In this section, I draw on my experience, as well as those of participants in my focus groups, to argue that care in the context of BDSM requires performances of care that enable new understandings of the meanings, contexts, and impact of caregiving and receiving.

As in the section above, this section should not be read as prescriptive. Just because some people have been able reframe caregiving as pleasurable through the use of BDSM, does not mean this type of sex play is ‘the answer’ for PWD and their partners. That said, there are a few parallels between sex involving disability and BDSM play that may make experimentation with BDSM easier or less foreign for PWD and their partners. For example, non-genital sex and the eroticization of body parts other than the genitals is often suggested as a key part of satisfying sex for PWD (Kaufman et al., 2007). Likewise, genital intercourse is not the focus of BDSM sexual play. BDSM practitioners play with a wide variety of sensations on all parts of the body, expanding erogenous zones and sexual response.

Heightened explicit communication is another important parallel between sex with PWD and BDSM. In her research with PWD, Shanna Kattari (2014) found that the communication required in BDSM play around interests, limits, and triggers improved the communication around disability-related issues during sex. Although communication is important for all sexual encounters, it is particularly important for PWD who may need to communicate with their partners about how their bodies may look, feel, or perform differently than nondisabled bodies. Kattari’s participants felt that the conversations that are typical before BDSM encounters helped them bring their disability-specific concerns into the conversation.

Conversely, in my research, participants theorized that experience with negotiating disability during sexual encounters could facilitate BDSM play. Alana K offers:

If you were already so used to having conversations about boundaries and consent and what feels good, having a lot more communication happening during sex to begin with [because of disability], it seems like that would actually be a good set up for adding in the BDSM stuff.

The other participants in that focus group agreed with Alana K, noting that for many PWD, their body is conversation early in relationships. People with disabilities often help new partners learn about their bodies by explaining the impairment, treatment regimens, care needs, and so on. Being so adept at having such personal and explicit conversations can facilitate the communication needed before a BDSM encounter.

Prior to engaging in BDSM, practitioners recommend that the ‘scene’ is negotiated. This means that all people involved will agree upon what kind of setting will be used, who will inhabit which role, what activities are ‘off-limits’, and what each partner desires in terms of physical, emotional, and sexual pleasure. It is this explicit communication, parallel to the communication involved in all types of sex with people with disabilities, that can also mobilize caregiving and receiving, creating new understandings of care for all participants. Margot Weiss’s (2011) recent work on BDSM is useful for unpacking the material dimensions of these new understandings. Like other scholars of BDSM, Weiss frames BDSM in theories of performance because the sexual play involves pre-negotiated, staged, dramas around power, pain, and pleasure. However, Weiss develops ‘performative materialism’ to better account for the material conditions and effects of BDSM performance. According to Weiss, performative materialism ‘draws attention to relationships between the socioeconomic and the culturally performative, linking historical social transformations to local and subjective performances’ (p. 9). Rather than engaging in the well-worn debate of whether BDSM is transgressive/empowering or regressive/disempowering, Weiss asks us to consider the material impact of BDSM performances. Specifically, she considers the real material conditions such performances arise from, the socio-historical histories they engage with, and their affective impacts on practitioners and audiences. In this section, I utilize ‘performative materialism’ to explore the ways in which disability and care are infused in the material conditions that shape BDSM-disability sexual play and the affective impacts of that play.

The materiality of care in BDSM play

Although Weiss does not list disability play as a type of ‘taboo’ play, sexual play in which impairment becomes part of the scene clearly invokes taboos around political correctness, ability/disability, and dependence/independence. The material conditions of disability, including the history of disability discrimination, may be invoked in a number of ways, including scene-setting (e.g. institutionalization, hospital) and role-playing (e.g. doctor/nurse/patient). Material conditions of disability can also be less scene-based and more about the history of seeing disabled people as fragile and dependent. Practitioners may desire to play with these themes of dependence and independence more broadly.

Other practitioners cite the materiality of disability history not through reversal, but through hyperbole and performing the cultural scripts of the patient, the weak, and the impaired. For example, Bob Flanagan, performance artist and self-described ‘supermasochist’, was famous for invoking the medicalization and institutionalization of the disabled body in his art and his life as a 24/7 submissive to his partner Sheree. Flanagan had cystic fibrosis (CF), and at the time of his death in 1996, he was the oldest living person with CF. Flanagan’s history with the medical establishment, the pain of CF, and the treatments necessary to care for CF were frequently the main topic of his sadomasochist performances. For example, in Autopsy (1994), Sheree performs a fake autopsy on the supposedly dead Flanagan, cutting and probing his body, further objectifying him by talking about him as if he is no longer there. These art pieces use masochism and submission to explore the material position of PWD as passive objects. Analyzing Flanagan’s life and performances, Dawn Reynolds (2007: 41) argues:

Performing and exaggerating tropes used to depict disability (e.g. sick, infantile, bedridden, and suffering), Flanagan literally embodied each of these caricatures in acts that both involved and revoked them. By embracing the negative stereotypes of disabled bodies, Flanagan played with these preconceived notions in ways that revealed their distorted (and, at times, humorous) reality.

Making visible and explicit the typical position of the disabled person is both therapeutic and erotic for Flanagan, Rose, and their spectators. As one of the participants in my focus groups said, the beauty of BDSM is that it ‘makes implicit power situations explicit’.

Another important material context for BDSM and disability is the practical limits and possibilities of the bodies and minds engaged in the sexual play. For example, Dominick points out that he has to take care to consider the kind of bondage he uses. As a disabled dominant, he wants to use restraints that are effective on his partner, but he also needs to ensure that he can easily and quickly remove them, especially if he begins to tire as a result of his impairment. In this case, disability literally shapes the techniques used in sexual play. Of course, it is possible to also utilize the supposed ‘limits’ of the disabled body to heighten the erotic anticipation involved in BDSM play. In Dominick’s case, he is cautious about his knots and restraints, but for his partner, the ‘risk’ of being tied up by a person with limited mobility may increase the sense of danger (in a good way) and the level of trust the scene embodies. This was clearly the case for me when Max would use a knife during sexual play. Multiple sclerosis made his hands shaky, so permitting him to use a knife on my body was a risk that was in part determined by the material conditions of his body. Like Dominick, Max was responsible with this type of play and usually used the dull back of the knife to reduce actual risk. However, he would show me the knife before the blindfold went on to intensify the experience and play on the illusion of a sharp blade. The inherent risk is what drives the erotic tension; however, the impairment shapes the play, adding in creative accommodations and utilizing the limits of the impairment to magnify the perception of risk.

Affective implications of making care and disability strange in BDSM play

In very concrete terms, BDSM play can literally be a form of care. Many disabled practitioners assert that it can help with pain management or be part of treatments. For Flanagan, beating or flogging his back and chest was simultaneously a sadomasochistic expression and physically therapeutic as it helped clear his lungs of mucus, one of the defining symptoms of CF, and the ‘pleasure of BDSM helped take Flanagan’s mind off his CF-induced pain’ (Reynolds, 2007: 44). Kattari (2014: 508) also found that BDSM helped PWD with pain management, noting that one participant was able to ‘reduce her partner’s pain by using positive pain or “good” pain in order to lower “bad” pain that stemmed from her partner’s disability’. In all of these situations, caregiving is ‘made strange’ by becoming an essential component of the BDSM sex-play.

Another significant affective outcome to BDSM play is the eroticization of the act of caregiving inherent in the Dominant/submissive (D/s) dynamic. Regardless of the presence of disability, it is typical for a submissive to care for his or her dominant partner by cooking, cleaning, or providing personal grooming. If those activities also need to be performed because of impairment, then that routine caregiving can become part of the sexual and erotic play. In the focus group, Allison said that the D/s dynamic really helped her reframe caregiving from something that is potentially burdensome to something desirable, alleviating some of the guilt she felt about needing help. She shared that the D/s dynamic ‘was such a better way for me to look at things, of like, you’re not going to get me food or a glass of water because I can’t do it myself, you’re doing it because it makes you happy to make me feel better.’ Thus, when the dominant partner is also the disabled partner, the fear of being a burden is reduced because of the eroticization of service.

In addition to the benefit of eroticizing care, embodying the dominant position as a person with a disability also invokes and upsets stereotypes about PWD as weak, out of control, and needy. As Dominick explains: ‘I am a sadist and dominant and it gives me a sense of control that, I think, I don’t have over my body and I think that’s a very healthy thing.’ Dominick uses his position as dominant to manage some of the stigma associated with being disabled. This was also an important aspect of Max’s experience with dominance. Prior to his diagnosis with MS, Max had many girlfriends, was a trailblazer in his career, and was physically active. As his MS progressed, he had to resign from his job and go on long-term disability. The fatigue made physical activity difficult, and relationships with women suffered. BDSM was a way for him to creatively refashion his masculinity in non-normative ways.

Although the potential transgressiveness of BDSM for PWD may be more obvious when the disabled partner is playing the dominant, the submissive role also provides disabled people with a unique space to explore care, power, and weakness. For example, a major part of ethical domination or sadism is that the submissive is pushed to, but not beyond, his or her limits. In other words, the well-being of the submissive, physically and psychologically, is considered part of the dominant’s responsibility. Thus, the caregiving needs engendered by the impairment become part of the power exchange. This is important not only for the disabled, submissive partner, but also for the dominant partner and any spectators that may be present because they must practice looking at a disabled person as sexual, active, competent, and even strong. In other words, the fear of hurting someone who is already disabled must be brought to the surface, made obvious, and dealt with in the course of BDSM play (Morrison-Gurza, 2014a).

Submission and masochism can also help the disabled partner explore internalized ableism. As the blogger called A Deeper Country writes: ‘Performing weakness, or allowing yourself to sincerely experience weakness, [involves the] controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.’

Many PWD push themselves beyond healthy limits in order to avoid ablest discrimination and prejudice. Because PWD are stereotyped as complainers and social burdens, they may keep silent when they experience bias or hatred, and they may work themselves far beyond the limits of their bodies/minds. Dealing with physical and emotional limits, performing weakness, and accepting care can all be fruitful outcomes of BDSM play for submissives.

Technologies of care

BDSM is also a sexual practice associated with the use of props and toys. Many of these props are also instruments used in the caregiving and treatment of PWD. Thus, the explicit use of ‘technologies of care’ – products designed to treat impairment or assist with movement, cleaning, and so on – is another way in which care can be reframed as part of sexual play. Rubber gloves, face masks, needles, catheters, clamps, Hoyer lifts, slings, foam wedges, and wheelchairs are all products developed for the care and treatment of impairment that have been redeployed for sexual play. Discussing her partner, Sheree Rose says:

A lot of our play had to do with needles … I think his fetish with needles was tied to his early experience of being ‘probed and prodded’ with sharp instruments and having to undergo many shots, and later, shunts, to deliver his medicine. (O’Brien, nd)

Bob Flanagan used ‘needle play’ to explore and work through his vexed relationship with needles, the result of intensive medical care throughout his life.

One of my favorite caregiving activities to do for Max was catheterizing him. He rarely let me do it, so it was a special caregiving activity reserved only for when he was very fatigued and unable to do it himself. The process of inserting something into another person’s body, without any visual guide or trace, was especially erotic and intimate to me. It required a great level of attunement, as I watched for visual or auditory cues of discomfort, and I always felt very close to Max when doing this care activity. As his partner, it was an act of care, and as his submissive, it was an act of love and an expression of servitude. Because Max also catheterized himself (or had me do it) before and after any kind of sex play, it also signaled that sex or sexual play may happen. For these reasons, I developed a sexual response to the sight and feel of catheters, and to the smell of rubbing alcohol which was also used to wipe the catheter before insertion.

It should be emphasized, however, that not all people with a history of disability and medical treatment will desire or value incorporating aspects of those ‘technologies of care’ into their sexual play. For example, although Allison enjoyed playing with dominance and submission, she had no interest in doing the ‘work of reclaiming’ needles. Her impairments have meant that she frequently needs blood drawn, and she has developed a negative association with needles. Although she recognizes that she could, potentially, work through her reaction to needles, she does not desire to at this point. Allison’s story shows that using BDSM and/or using technologies of care is an active, conscious process.

Of course, using ‘technologies of care’ in sexual play is not limited to BDSM play. Many people who practice ‘vanilla’ or non-BDSM sex also employ ‘technologies of care’ in their sex lives. Talking about the way in which getting a disabled partner undressed and into the bed for sex can be seen as sexy, Andrew Morrison-Gurza (2014b) exclaims, ‘Sometimes there may even be a sling involved.’ Similarly, Tim Rose also shared his experiences with using his wheelchair to facilitate sex:

I actually had an article written about my organization and my relationship a couple weeks ago in a magazine here in Toronto, and the article started out by saying ‘Tim sits in a three-hundred pound sex toy, i.e. my power wheelchair, for ten/twelve hours a day,’ and it is. My wheelchair is a fantastic sex toy … So yeah, I absolutely … I use the chair, I use the Hoyer lift. I use whatever I got.

Tim uses a power wheelchair that can adjust and recline to enable a variety of sexual positions for him and his partner, Natalie. In many of the public pictures of the couple, Natalie, a nondisabled woman, is riding on his wheelchair, touching and gazing at Tim lovingly. These pictures and the text reframe a ubiquitous technology of care, the wheelchair, into something that facilitates love and intimacy.

Technologies of care have also been redesigned in order to create new sexual possibilities for PWD and their partners. For example, a company has recently redesigned a sling for a Hoyer lift that permits a disabled man to lie in it face down so that he can be on top of his partner, face-to-face (Meisenzahl-Pearce, 2014). This device was built as a custom design for a quadriplegic man who desired to have sex in a missionary position. Built from a device originally used to move and transport PWD, the reconstructed device enables new sexual positions and pleasures.

Conclusion

In the previous section, practitioners invoked the material conditions that constrain disability, care, and sexual relationships – through role-play or creative repurposing of products – in order to make them strange, recasting care as sexually pleasurable. Significantly, in every situation in which care has been redeployed in sex, the process was facilitated by open, explicit communication. In other words, conscious efforts were made to make care strange, to cleave it from its normative construction as a routine, burdensome activity, freeing it for perverse possibilities. As I have shown, the ‘pleasures of care’ become possible when individuals make assumptions about care, dependency and disability explicit, reconfiguring them, and opening up new emotional and sexual pleasures.

These findings are significant in terms of how we think about sex and sexuality, but they also have interesting implications for our contemporary understandings of care. Especially for PWD who struggle against negative images of their lives as wholly dependent, vulnerable, needy, and burdensome, it can be particularly tempting to embrace and promote the ideal of independence. My research questions such motives by illuminating some of the possibilities of combining care and sexuality with intimate partners. Of course, more research is needed, especially around the potential of emotional and spiritual caregiving (as opposed to physical caregiving); the ways gender, race, and class influence an individual’s ability to reframe and make care strange; and the role care plays in the sexual relationships of people with cognitive impairments, but it is my hope that the ‘pleasures of care’ offers a starting point for further exploration.

Footnotes

Funding

This research received no specific grant from any funding agency in the commercial, public or not-for-profit sectors.

Notes

Sarah Smith Rainey is an Assistant Professor in the School of Cultural and Critical Studies and the Women’s, Gender, and Sexuality Studies Program at Bowling Green State University. Her work focuses on people who are sexually marginalized, including people with disabilities, BDSM practitioners, people with HIV/AIDS, and LGBT people. She has published in the Journal of Literary and Cultural Disability Studies, Lesbian and Gay Psychology Review, and AIDS Education and Prevention. Her first book, Love, Sex, and Disability: The Pleasures of Care was published in 2011. She is currently working on a second book Extended Family Values.

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