“I Don’t Want to See Myself as a Disabled Person”

Abstract

This article explains how the most recommended treatment for obstructive sleep apnea (OSA), the continuous positive airway pressure (CPAP) device, acts and interacts with users’ bodies, sleep partners’ bodies, and cultural discourses to produce emotions and practices that generate the subjectivity of a disabled or abled person. Drawing upon in-depth interviews with OSA patients, this article illustrates how introducing CPAP devices into patients’ lives may disturb their sleep and breathing, diminish their independence, disfigure their appearance, and problematize intimacy with bed partners, thereby disrupting both the fleshy body and the culturally preferred image of a healthy, independent, and attractive individual. In response, many patients reject this treatment. (Dis)ability as a subjective state is shown to emerge from associations in a network composed of heterogeneous entities that have agency. That is, disabled subjectivity emerges when the device prevents individuals from accomplishing what they consider to be the essential and socially significant aspects of sleep and primarily its disembodied and interembodied aspects.

Keywords

device technology disability performative agency qualitative research methods sleep and sleep disorders subjectivity

Introduction

Technologies, disabilities, and subjectivities are closely intertwined. Research has revealed that individuals may be classified as disabled but not see themselves as such, and vice versa (Watson 2002), but we still know little about the processes through which individuals begin to identify as “disabled” (Kelley-Moore et al. 2006), and particularly about the role of assistive technologies in the production of disability as subjectivity. This article suggests some of these processes by examining obstructive sleep apnea (OSA) patients’ experiences with continuous positive airway pressure (CPAP) devices, showing how the CPAP acts and interacts with bodies and cultural discourses to produce new practices, emotions, and subjectivities.

Despite growing interest in the study of sleep and sleep-related issues (Hislop and Arber 2003; Williams 2005, 2011; Zarhin 2016b), there are few social scientific studies of OSA and its most recommended treatment, the CPAP device (exceptions include Kroker 2007; Moreira 2006; Zarhin 2015, 2016a). OSA is the most commonly diagnosed sleep disorder (Moreira 2006). It consists of repetitive collapse of the upper airway during sleep, which may lead to snoring, choking episodes, disturbed sleep, daytime somnolence, fatigue, and impaired cognitive and executive function, as well as increased cardiovascular and metabolic morbidity (Mannarino, Di Filippo, and Pirro 2012; Sawyer et al. 2010; Colten and Altevogt 2006). The CPAP device, which was invented in 1981 by Colin Sullivan (Sullivan et al. 1981), has been widely adopted as the frontline therapy for moderate to severe OSA to replace the previous surgical treatment for OSA, tracheotomy (Epstein et al. 2009; Moreira 2006). The CPAP device is attached by a face mask held in place by a tightening band and applies mild air pressure to keep the airway open. There is much evidence that CPAP therapy is effective, reducing breathing disturbance, alleviating symptoms, and restoring impaired daytime function (Teri, D’Ambrosio, and Mohsenin 1999; Ferini-Strambi et al. 2003). Nevertheless, most patients resist this therapeutic technology and do not adhere to its use. CPAP adherence, usually defined as at least four hours of nightly use, is quite low, with nonadherence often reaching 71 percent (Lindberg et al. 2006) and even 83 percent of patients (Weaver and Grunstein 2008). Analysts have explored the reasons for patients’ rejection of this device (e.g., Liistro, Aubert, and Rodenstein 1995; Hrubos-Strom and Nordhus 2009; Poulet et al. 2009) but neglected to consider this technology’s effects on patients’ self and subjectivity as a possible cause of nonadherence. This is the focus of this article.

(Dis)abilities and Technologies

In many Western countries, the ideal body image is healthy, independent, and attractive (Shilling 1993). This ideal image has particular resonance in Israel because strength and independence are highly valued and emphasized in Israeli culture as lessons from the Holocaust (Hashiloni-Dolev and Raz 2010) and as products of Zionism, which glorified the tough-skinned sabra (tzabar), who was modeled as the strong soldier and pioneer (Almog 1997; Hoffman 2013). Furthermore, Judaism, which is embedded in various sociocultural arenas, commands to protect persons with disabilities, but it also perceives them as impure, blemished, and defective (Rimmerman 2013). In many realms of life, therefore, disability is treated as a personal tragedy (Rimmerman et al. 2015). In such a context, replete with social stigma and oppression against the physically different, disability threatens individuals’ self and identity.

In response to the stigma of disability, disability rights movements, activists, and academics advocating “the social model of disability” have attempted to reframe disability as a social restriction and oppression. They have criticized the medical model of disability, which views disability as inherent in impaired bodies, and have distinguished between impairment as a physical or mental dysfunction and disability as a product of cultural, social, and environmental barriers as well as disabling politics (Oliver 1990). This model views technology as significant because it may either hinder or facilitate the creation of a more accessible and inclusive society. Although liberating in many ways, this model, which currently dominates critical disability studies, pays little attention to the body and to corporeality (Hughes and Paterson 1997; Edwards and Imrie 2003) and places more importance on values and representation in the public sphere, leaving the material, corporeal, and private spheres largely underexamined (Van der Horst and Hoogsteyns 2014).

In recent years, increasing research has focused on the link between disabilities and technologies (e.g., Winance 2016; Blume, Galis, and Pineda 2014). Some of it explores individuals’ experiences of disability and shows how technologies can disable as well as enable (Brodersen and Lindegaard 2014; Apelmo 2012; Forlano 2016). Other scholars who use actor–network theory (ANT) have argued that (dis)ability results from a process of associations in a network of heterogeneous entities (Moser and Law 1999; Galis 2011; Galis, Tzokas, and Tympas 2016). Human agency, including the ability or inability to act, is possible or not because of the existence of material semiotic surroundings. Hence, not only human actors but also nonhuman actants have agency in the sense that actants are able to bring new realities and practices that have socially binding effects into being (Hawkins 2012). Agency, therefore, is an emergent property that derives from arrangements composed of human and nonhuman entities, whose interactions within a network can and should be followed (Callon and Latour 1992; Pickering 1995). While the existing literature broadens our understanding of disability and the role of technology in its emergence, further research is needed to clarify the mechanisms through which individuals come to see themselves as disabled. Additionally, these studies tend to equate and conflate human agency with bodies, a tendency that is prevalent in writings on embodiment as well.

Embodiment and Sleep

Embodiment is the “irreducible coming together of both mind and body” (Shildrick 2015, 14). Mind and body are inseparable, such that the “mindful body” is considered “the active sentient basis of agency” (Williams and Bendelow 1998, 208). The confluence of embodiment and the physical and cultural worlds produces subjectivity (Fox 2002). Subjectivity implies awareness of subjective feelings and a degree of thought and self-consciousness about identity, whereas identity can be thought of as that particular set of traits, beliefs, and allegiances that gives one a consistent personality (Hall 2004). Both embodiment and subjectivity are relational: bodies are experienced and conceptualized in relation to other bodies, discourses, and practices, as well as nonhuman objects (Lupton 2013). The relations between bodies, subjects, and objects, as well as their histories, generate emotions as well, which both circulate and connect bodies to bodies (Ahmed 2004).

Scholars have suggested that analysts draw on the “paradigm of embodiment” in the investigation of sleep, as sleeping is both embodied and embedded in the social world (Meadows 2005; Williams 2007). This article draws on this paradigm but identifies its limitations in investigating “sleep itself.” Further, whereas recent sociological works have enhanced our understanding of sleep-related matters, including how the advent of new technologies has affected our experience and management of sleep (e.g., Williams, Coveney, and Meadows 2015; Coveney 2014), few have examined what happens to agency in the context of sleep (e.g., Lee 2008) or whether and how agency is exchanged from body to technology in sleep. This article addresses these questions by examining the attribution and exchange of agency in the context of sleep through CPAP as a multifaceted social process.

Method

This study draws on the sociological perspective of symbolic interactionism, which posits that people’s actions are guided by the socially created meanings that they impart to them (Blumer 1969). However, whereas symbolic interactionists focus on humans, this study follows insights from ANT studies and pays attention to the role of nonhuman entities as well in creating these meanings and actions. Collection and analysis of the corpus of data, which includes in-depth interviews with sixty-one Israeli patients who received a laboratory diagnosis of OSA and a recommendation to use a CPAP device, was guided by constructivist grounded theory method.

In January 2010 and from October 2010 to January 2011, I recruited patients through a big sleep center located in the Tel Aviv metropolitan area. Either one of the specialists or I approached OSA patients who arrived at the center and asked whether they would be willing to participate in a research on the experience of sleep-related problems. In addition, I randomly selected a sample of patients from a list the sleep center provided me and contacted them by calling them on their phone. A few refused to participate, but the majority has gladly agreed. Face-to-face interviews took place at coffee shops, the sleep center, and respondents’ homes or workplaces based on the preferences of the interviewees. All participants signed a consent form that described the purpose of the study. The interviews lasted between 40 minutes and 2.5 hours, with an average of 76.44 minutes. All interviews but one were conducted in Hebrew. They were tape-recorded, with participants’ consent, and field notes were written soon after each interview. Both the institutional review boards at Brandeis University (#10059) and the Helsinki Committee at the hospital (#0019-09LOE-1) have granted human subjects approval for this study.

All respondents were asked a specific set of questions about their reasons for arriving at the sleep center, their experiences at the sleep center (from their meeting with a sleep specialist through the diagnostic test to their trial night of CPAP), and their thoughts about and experiences of the CPAP device (at the lab, during the trial period, and after purchase). In addition, I probed and asked supplementary questions to sharpen and deepen participants’ responses. Following grounded theory principles, I gathered and analyzed data simultaneously, identifying categories, which I investigated further by appending research questions to the interview guide. Data collection continued until theoretical saturation was reached, meaning until the data derived provided detailed description, properties of categories were developed, and additional interviews did not generate novel insights about the concepts that had emerged or produce a change to the codebook (Guest, Bunce, and Johnson 2006; Morse 1995; LaRossa 2005).

The sample comprises of sixty-one Jewish–Israeli patients (twenty-eight women and thirty-three men) who received an OSA diagnosis sometime in the eighteen months prior to the interview. The vast majority of the participants (n = 51) were married at the time of the interview and one respondent was living with a partner. The rest were divorced (n = 6), separated (n = 1), or widowers (n = 2). Except for two men, all respondents had children. While most participants were employed (n = 42), about one-third was either unemployed (n = 7) or retired (n = 12). The majority of respondents were from the middle class (n = 44), but a few (n = 12) were from the working class. Information about social class is missing for five of the respondents. Participants’ ages ranged from 30 to 66, with a mean age of 53.1 among men and 57.7 among women. Throughout this article, pseudonyms are used to protect the anonymity of respondents, with their age and status of adherence to CPAP indicated in square brackets.

The interviews were transcribed verbatim and uploaded into ATLAS.ti (version 7.5), a program for qualitative data analysis, where the interviews were coded and analyzed based on grounded theory principles, including systematic conceptualization and continual comparisons (Charmaz 2006). During the initial coding stage, all data were given equal consideration and all the theoretical possibilities were explored. The later stages of coding included densifying codes into categories and concepts and moving from a descriptive level to a more abstract theoretical level, thereby constructing a theory “from the ground up.”¹

Findings: (Dis)ability as an Effect of Associations in a Network

Respondents varied in their levels of adherence, with most patients choosing not to use the CPAP. The group of “nonusers” consists of forty-two respondents who either refused to try the device or rejected it after trying it for one night at the sleep center or a few days at home. The group of users can be divided into three subgroups according to their levels of adherence: the first group, termed “adherent users,” includes eleven respondents who purchased the device and used it on a nightly basis. The second group, “partially adherent users,” includes four respondents who said that despite purchasing the device they did not use it on a regular basis but rather only occasionally. The third group includes four “nonadherent users” who purchased the device and used it on a nightly basis for a period of time and then decided to stop using it altogether.

A number of respondents who experienced severe diurnal symptoms prior to treatment and felt a significant relief thereafter adhered to CPAP use. These respondents saw OSA itself as a form of disability and the CPAP as an instrument that helped to alleviate it. Judith [age sixty-two, adherent user], for example, suffered from excessive daytime sleepiness that affected her daily functioning. She stopped caring for her house and grandchildren because of her sleepiness and fatigue, and even had a car accident due to drowsy driving. In her interview, she wept as she recalled how her acute symptoms made her feel, “I was like a disabled person! I couldn’t do anything!” When she reached the sleep center, she was desperate for treatment. She accepted the doctor’s explanation that OSA was causing all her symptoms and immediately agreed to spend a night with the CPAP at the sleep lab. Soon after that night, she purchased the device and used it nightly. Within a few weeks of using it, she felt a profound and meaningful change in her condition, as well as self and subjectivity, as she explained, “This device helps me so much. It’s incredible. I am a completely different person. I feel like I was in a cemetery and moved to heaven…I accept it [the CPAP] with love.” For Judith, the CPAP device served as an effective assistive technology that eliminated her disability. In her experience, the CPAP liberated her from her disabling symptoms and allowed her to embrace life again as “an able person.” Similarly, while describing how he adjusted to the CPAP, Joseph [fifty-seven, adherent user] compared the device to other types of assistive technologies:

It’s like a person who wears glasses. He doesn’t do it because he wants to, he does it because he needs it […] It’s like getting used to crutches; like any other disabled person needs to get used to a device.

As with Judith, Joseph, who suffered from daytime fatigue and frequent awakenings during sleep, saw OSA itself as a type of disability and believed the device provided him with a much-needed aid. In these accounts, OSA is the source of disability and the device its successful therapy.

Such accounts, however, were the minority within this sample. Most of the participants, including many who experienced severe nocturnal and diurnal symptoms, such as falling asleep during social interactions and inability to carry out basic chores at home or at work due to excessive fatigue, contended that the CPAP device itself had made them “feel disabled.” Rosy [fifty-five, adherent user], who suffered from excessive daytime sleepiness, for example, professed, “I wish they could give me a pill that would fix things and that’s it, especially now that I am used to taking so many pills. Honestly, this thing [the CPAP], it’s like a kind of disability; it is like a type of a prosthesis.” For Rosy, using a device that resembled prosthesis, a technology that is supposed to improve disabled persons’ physical status, made her condition akin to disability. She further implied that disability was worse than chronic illness or disease, as she preferred taking medications over using prosthesis-like devices.² Another respondent, Isaac [forty-eight, nonuser], longed for a “real solution” that would cure his impaired breathing and relieve him of the obligation to use a device, asserting:

The CPAP is supposedly a solution, but not really, because you have to put a device on; you’re not a normal person. It’s like a person who wears a hearing device; the device does not solve his hearing problem.

Isaac compared the CPAP to other assistive technologies, but implied that a person who depends on a device to complete fundamental activities loses some of his “normality” and becomes a social deviant. As with many participants, Isaac added that the device made him feel disabled, a feeling he disliked and refused to accept thereby rejecting this course of treatment. These examples illustrate not only the negative attitudes most respondents shared toward disability but also the fluid and contingent nature of disability and disabled subjectivities (Barnartt 2010). Whereas some persons saw themselves as disabled because of certain symptoms, others did not feel that way despite having similar symptoms. The latter began to see themselves as disabled only due to the use of a specific technology. As the following will show, participants provided a number of explanations for the emergence of disability as subjectivity through the use of CPAP.

Disturbing Sleep and Breathing

Many respondents believed that rather than helping them achieve restful sleep, the CPAP device prevented them from sleeping. To understand what this disruption means to respondents, it is important to first understand the meanings they ascribe to sleep. The majority of respondents were aware of the significance of sleep, but users and nonusers emphasized different aspects when discussing the importance of sleep. Adherent and partially adherent users of CPAP put more emphasis on sleep as a necessity, using pragmatic terms, while other respondents tended to highlight sleep as both a need and a joy, using more hedonistic terms.

Specifically, when asked what sleep meant for them, most respondents framed sleep as a biological imperative whose accomplishment was required to allow proper daily functioning. Yoram [fifty-five, partially adherent user], for example, said, “For me, the purpose of sleep is to gather strength. It is something I know my body needs so I could keep functioning…I appreciate the importance of sleep as a basic need of my body, my mind, everything.” Shira [fifty-eight, adherent user] stated, “I go to sleep because I am tired and I know I have to go to sleep.” Still, many respondents, especially nonusers of CPAP, saw sleep as a pleasant pastime as well. When asked what sleep meant for him, David [fifty-three, nonuser] replied, “Sleep is fun! Siesta is divine fun! […] It is better than any other type of entertainment. I love it!” Adam [fifty-seven, nonuser] answered, “Sleep is a wonderful thing. It allows you to forget about the world. It’s like meditation, a kind of escapism. You can turn off your brain and move to another realm.” Other respondents also said they loved sleeping and saw it as “a refuge from the burden of life.” As these quotes indicate, sleep as a refuge lies in its disembodied nature. Sleep means temporary lack of consciousness and therefore a suspension of the mind, and is therefore disembodied. This suspension of the mind, subjectivity, and to some extent agency, which begins by letting go of all thoughts, worries, and concerns, as well as a sense of control is necessary for sleep to occur. Nonusers spoke of sleep as a time of essential repose, emphasizing this aspect of disembodiment, which was impeded by the discomfort involved in using the CPAP device. In these respondents’ accounts, sleep emerged as a vital bodily function whose accomplishment required care and caution, as it could be easily perturbed. Achieving sleep, they explained, required a calm and quiet environment where they were unrestricted and free to do as they pleased. Therefore, being restricted to an external cumbersome and “noisy” device was a daunting thought and a difficult experience for them. A few examples follow.

A number of interviewees were accustomed to specific sleep positions and worried that being attached to a bulky device would force them to change their regular sleep positions. Estee [sixty-five, nonuser] recounted, “You have to sleep on your back because you cannot sleep on your side with the device, and worse than that, I always sleep on my stomach. So, how will I sleep? How will I sleep?” Other respondents worried the noise exuded by the machine would disturb their sleep, as Shelly [sixty-one, nonuser] stated, “It’s noisy. I told the doctor, ‘I am not going to sleep with that thing. I know myself. I need silence to fall asleep. I will not even try to sleep with it.’”

Respondents who tried the device were bothered by the incoming air pressure and its fluctuations. Aaron [sixty-three, adherent user] recalled, “I came home and couldn’t deal with the air pressure. It was too light or something, I felt I could barely breathe […] It still bothers me, I feel like I have to struggle; I am restless.” The calibrated air pressure and its effects on breathing bothered other respondents who lamented not being able to “breathe freely” due to the device. As Yoram [fifty-five, partially adherent user] explained,

I stopped using it because it choked me and because I couldn’t stand this horrible noise […] People around me cannot hear it, only I can hear this constant sound [whistles], like a whistle. I call the device “a respirator” and…it chokes me!

Yoram was disappointed to learn that the device intensified his breathing problems instead of alleviating them. In his experience, the airflow from the device was either too high or too low. His body did not adapt to the new realities dictated by the device. Yoram kept using it for a while, but after returning from a long trip abroad during which he did not use the CPAP, he stopped using it on a nightly basis and only used it upon his wife’s request on nights when she could not tolerate his snoring. Similarly, other respondents also said they “fought” with the device throughout the night, until they reached a point of exasperation, took off the mask, and fell asleep without it. Nonusers’ repeated invocation of various militant terms, such as “struggling with” or “fighting” the device, implies that this machine essentially turned their experience of sleep from that of joy and rest to that of combat and conflict. They were eager to let go of their agency as disembodied bodies, but instead were forced to become hyper-agents.

The body, in these cases, was recalcitrant and irresponsive to the materiality of the device. In CPAP devices, the air pressure is fixed: the pressure is usually calibrated by a technician during a trial night at the sleep center to fit the individual’s body and then left at that setting. However, bodies are not fixed, but rather dynamic entities, such that the constant pressure does not always fit the contingencies of the body. The effect of these relations between the body, the technology, and cultural discourses was the impairment of basic bodily functions, primarily sleeping and breathing, and the inception of certain emotions, including feeling disabled. Disability, therefore, emerged as a subjectivity that was an effect of associations among heterogenous entities.

Diminishing Independence

Nonusers feared losing their sense of freedom and independence both in sleep and in wakefulness. Many argued, for example, that the mask confined them to their beds and inhibited their movement, a physical restraint that stirred negative emotions. Adele [sixty-three, nonuser] exclaimed, “You feel tied to your place, you feel trapped, like a caged animal!” while Adam [fifty-seven, nonuser] remarked:

It’s not worth the mess [tararam]. It’s not worth the feeling of being handicapped, attached to instruments, suffering from all kinds of nonsense. It’s not a pain to wear it, but […] It’s unpleasant. However, the greatest unpleasantness is emotional. I don’t want to see myself as a disabled person. I am too narcissistic for that. I want to feel healthy, strong, active, nice. That’s it. (Emphasis added)

In this quote, Adam linked being tethered to an external device with feeling disabled. Adam mentioned the physical discomfort involved in using the machine, but found the emotional disturbance to be even more significant, as the device prevented him from embracing the culturally preferred image of a “healthy” and “active” person. The change in these respondents’ embodiment, therefore, affected their emotions as well as self and subjectivity.

Respondents also feared that they would not be able to fall asleep without the device and would “become addicted” to it. Relying on an external device for sleep, they claimed, could diminish their independence in day-to-day lives. For instance, Sammy [sixty-four, nonuser] said:

I noticed that my sister became dependent on this device. Wherever she went, she took it with her because she could not manage without it. I didn’t like that. If I need to be addicted to something, it definitely should not be these devices.

Sammy may have focused on the fact that his sister found the CPAP to be so helpful that she decided to carry it wherever she goes, as some adherent users stated. Instead, Sammy framed his sister’s reliance on the device as a harmful addiction that he preferred to avoid. Eden [thirty-seven, nonuser] shared these concerns:

I have a feeling you become addicted to it. I don’t want to become dependent on something external…on a device. So…When I started thinking about it, I said, “How will I travel abroad? What will I do? How will I go on vacations?” What, I will be like some geriatric person at home with an oxygen mask? I don’t want it […] I want to be a free person, not dependent on devices.

Eden was concerned that having to use the CPAP might subjugate her to a device that could become the dominating agent in her life in a way that threatened her self-perception as a healthy, self-sufficient, and free agent. The thought of using the CPAP, therefore, evoked fears of an unacceptable shift in her daily practices as well as self and subjectivity.

A number of nonusers said that using the CPAP made them feel like they were at a hospital and were troubled by this blurring of boundaries between “home” and “hospital.” Nicky [sixty-four, nonuser], for example, poignantly described her experience of trying the CPAP, her voice trembling:

It was a nightmare, just a nightmare! Besides, you see yourself in the mirror and you say, “That’s awful. That’s just awful.” How can you sleep like that, like an alien? It’s horrible. The rubber pulled my [points to her cheeks] and…That’s horrible. When a person comes to the hospital, he has no choice, he has to wear masks and stuff, but giving up and sleeping with this?

As this quote implies, at the hospital, patients expect to relinquish some control over their bodies and be subjected to inspection and bodily manipulation through various technologies, but they expect to maintain bodily control in their own homes. A home is an expression of being in the world (Wardhaugh 1999). Thus, “giving up” and sleeping with a device at home means embracing a different state of being, in this case, disability as a subjective state. Nicky refused this treatment and tried alternative ways to treat her OSA, such as yoga and breathing workshops. Similarly, Aviad [forty-three, nonuser] rejected the CPAP as a solution, explaining with passion, “It makes me feel like I am in a hospital. That’s the problem […] I don’t want to be attached to anything!” Many respondents similarly stated that bringing in such a “hospital-like” technology into their home was unsettling.

Disfiguring Appearance, Problematizing Intimacy

Persons with OSA are unable to “see” their symptoms. Snoring and breathing pauses rarely awaken patients, and daytime sleepiness and fatigue are deeply felt but not always easy to observe. The visually unappealing CPAP mask, however, turns OSA into a visible condition, thereby transforming OSA from a “discreditable” stigmatized condition that could be hidden into a “discredited” one that becomes evident on the spot (Goffman 1963).

As a result, and motivated by a desire to maintain the ideal body image as attractive individuals, respondents of all groups were highly concerned about the unaesthetic appearance of the CPAP and its possible impact on intimate relationships. Tammy [fifty, nonadherent user] recounted, “In the beginning, I felt like an elephant. The size of this thing and my own size with this snorkel on my nose…Initially it helped me sleep but then it really bothered me.” After a long period of adherence, Tammy stopped using the device. Despite improvement in her diurnal symptoms, she felt that the way the device made her feel about herself was worse than its contribution. Another interviewee, Rosy [fifty-five, adherent user], adhered to the treatment, but argued that it made her feel like a “monster”:

It’s very unsexy! That’s my main problem with it. It’s primarily my own problem, because after all, my husband is the one who sent me there [to the sleep lab]. He is at peace with it and there is no problem, but it makes me feel like a monster.

Rosy and many others who tried the CPAP as well as those who used it regularly often wore it in the dark or after their partners fell asleep to minimize chances that they would see them with the mask. For the same reason, a number of respondents did not put the mask back on when they went to the bathroom in the early morning hours. Nicky [sixty-four, nonuser] recalled worrying her husband would see her wearing the device during the trial period, “[My husband] saw me with it once. I used to put it after he went to sleep and I went to bed with it. Nevertheless, I didn’t feel at ease with it. It’s not a pretty sight.” Another adherent user, Kevin [fifty], stopped sleeping in the same room as his wife upon initiation of CPAP.

A number of women were concerned not only about how they looked while wearing the CPAP but also about the risk that the CPAP would alter their facial features and make them less attractive. Specifically, they worried that the mask would enlarge their noses, broaden their nostrils, or leave holes and marks on their skin. Here, the concern was not with the body’s defiance but rather with its malleability. The concern was that the technology would leave its imprint on the body. Thus, with its agency, the CPAP altered both practices and emotions.

According to respondents, partners greatly preferred a “scary looking” but quiet sleep partner to a loud and disturbing one and therefore encouraged CPAP use. Nonetheless, many patients still dreaded bringing this new guest into the bedroom. Some interviewees worried that their partners would not find them attractive after seeing them with the device. Amos [sixty, nonuser] refused to even try the device for this reason. He explained he did not want to wear the mask because of “How it looks visually. I didn’t want my wife to see me like this. I didn’t like putting these things on my head.” Isaac [forty-eight, nonuser], who was in the process of getting divorced, arrived at the lab as part of his journey for “self-improvement.” He believed that by eliminating snoring, he would become a better companion. However, he was disappointed to learn the treatment for his condition was the CPAP device, as he believed this technology would detract from his attractiveness, and constrain intimacy and sexual relations with his future partner. “What if she wants something in the middle of the night, and you have this hideous plastic thing on your face?” He asked. Isaac believed this device would make him an even less appealing partner than his snoring did. Arie [thirty-one, nonuser] felt significant improvement in his general condition during his trial period of CPAP, feeling more alert and able to concentrate. Yet, he decided not to purchase the device because its appearance and effect on his blossoming relationship troubled him, “It [the CPAP] reminds me of the elephant man or…What’s his name, Hannibal Lecter. I told her [his girlfriend], ‘Okay, this thing goes into the closet.’” Using this device, therefore, made respondents feel “monstrous” and “ugly” in a place in which they wanted to feel most attractive and desirable, the bedroom, which functions as not only a place for sleep but also for sex.

Participants in this study, and especially nonusers of CPAP, emphasized the importance of sharing a bed with their partners (Zarhin 2016b). They stressed the importance of touching accidentally in the middle of the night, of cuddling, of feeling the warmth of their partner’s body, of waking up close to their partner, and seeing him or her there and the security that comes with this feeling. Respondents referred to the “togetherness in sleep” as essential for the maintenance of intimate relationships. Thus, in contrast to the common perception of sleep as an individual inactivity, respondents view sleep as a two-bodied interaction that connects body to body and allows for the enhancement of closeness, intimacy, attraction, and love. Here, sleep emerges as a state of “interembodiment,” which “encapsulates the notion that apparently individuated and autonomous bodies are actually experienced at the phenomenological level as intertwined” (Lupton 2013, 39). Respondents worried that their relations with the technology would impede their relations with their bed partners. Bringing in a hospital-like device into the bedroom would create a buffer between the two autonomous but intertwined bodies. Not only is the spontaneity of sex eliminated but also the simple intercorporeality that comes with cosleeping would be lost to CPAP wearers. Again, the device disables in the sense that it prevents individuals from accomplishing what they consider to be the essential and socially significant aspects of sleep. Most respondents, then, were recalcitrant, refusing to use the device and to embrace the subjectivity of a disabled person.

Discussion and Conclusion

The unexpected consequences of CPAP devices include constraining daily and nightly activities as well as bodily functions in a way that affects individuals’ self-perception. The CPAP devices and the fleshy body do not always operate in perfect synchrony, thereby interrupting participants’ sleep and breathing. Hence, rather than an enjoyable inactivity, sleep becomes a site of struggle in which respondents “fight” to breathe “normally” and sleep soundly. Both the embodied and disembodied aspects of sleep are significant in this experience, as respondents expect to let go of their mind, subjectivity and some of their agency but find it to be more difficult with the “interference” of the devices, which threaten to make them into hyper-agents, fighting for breath. Simultaneously, the CPAP also threatens to deprive them of their agency, making them dependent on an “external” machine for sleeping and breathing. The interembodiment in sleep is also important to participants who wish to preserve the “togetherness” in sleep with their bed partners and refuse to allow a buffer between their intercorporeal bodies, as they believe it may jeopardize their intimate relationships. Patients rely on the culturally preferred image of a healthy, independent, and attractive person, which is highly valued in Israel, and argue that the CPAP device changes their embodiment, making them into “dependent” and “unattractive” individuals. As this case shows, in ableist contexts, such a shift in self-perception may be unacceptable to users who thus reject this technology even if it brings relief in disabling symptoms. Individuals are aware that their symptoms may harm their family, work, and health, but they still refuse to use this therapeutic technology because of its effects on their self and subjectivity.

As the analysis shows, the CPAP device acts and interacts with the user’s body, the partner’s body, and cultural discourses to produce a specific kind of subjectivity, that of a disabled or abled person, which persists across the sleep/awake threshold. Dis(ability) is therefore an effect of a process of associations in a sociotechnical network. All of the entities involved in this network have agency, as their relations are able to bring new realities that have socially binding effects into being. Since sleep is an embodied, disembodied, and interembodied process, it involves changes in the nature and transference of agency, which is assumed, delegated, reclaimed, and shared by the various entities involved. Recalcitrance on the part of any involved entity changes the relations and produces a different effect, including disability/ability, sleep/wakefulness, or more often, something in between.

This study draws upon and contributes to several bodies of knowledge. It enriches our understanding of the human–machine relations in general and of how these relations produce dis(ability) in the context of sleep in particular, thereby facilitating the exchange of ideas among Science and Technology Studies scholars, disability analysts, and sleep researchers. This study shows that individuals, bodies, and technologies have agency, which is not inherent in the subject or material but emerges from their relations. Certain conditions have to be met in order to produce ability and others to produce disability, and the recalcitrance of any one of these entities could result in a different reality and in an exchange of agency.

This study contributes to the small but growing literature on the processes involved in adopting disabled identities and the dynamics of these identities (Ridolfo 2010; LoBianco and Sheppard-Jones 2007; Loja et al. 2013; Brown et al. 2009; Taub, McLorg, and Fanflik 2004), showing that impairment does not necessarily lead to the adoption of disabled identities. Rather, it shows how the use of assistive technologies may lead individuals to see themselves as disabled. Embracing disabled identities could be empowering and beneficial to individuals, as some research demonstrates (Brown et al. 2009), but this case illustrates how, in contexts characterized by ableism, disabled identities are seen as negative and often refused. This underscores the enduring stigma of disability, which becomes a “threat” that affects not only persons who see themselves as disabled but also those who do not. Hence, this article calls for a continued effort to destigmatize and “reclaim” disability.

As the analysis makes clear, diverse factors affect the production of disability as subjectivity, including the design of technology and the social meanings and normativities embedded in it, as well as the body and corporeality, which do not necessarily adapt to the technology. Thus, this study contributes to critical disability studies, which often neglected to consider the embodied experience of disability because of its focus on disability as socially generated (Hughes and Paterson 1997; Edwards and Imrie 2003). Furthermore, the study illustrates how disability is produced not only in the public sphere, which has been the center of most analyses (Van der Horst and Hoogsteyns 2014), but also in one of the most private domains of the private sphere, the bedroom.

By showing how the complex nature of sleep as a biological imperative, vital social role, a pleasurable activity, and a two-bodied interaction makes sleep into an important achievement whose disruption can affect not only individuals’ functioning but also self and subjectivity, this article adds to the emerging subfield of the sociology of sleep (Williams 2002, 2005; Meadows 2005). Even in a supposedly solitary world, in which the individual is with herself and her dreams, and away from social discrimination and oppression, which are the focus of the social model of disability (Oliver 1990), stigma and other social norms and perceptions still permeate and affect self-perception. Furthermore, the study shows that the paradigm of embodiment that has been suggested for the study of sleep should be broadened, as sleep appears to be a dynamic process that includes embodiment, interembodiment, and disembodiment, and in which agencies are constantly assumed, delegated, and shared. Consciousness comes and goes, agency comes and goes, but across the sleep/awake threshold, a certain type of person emerges and persists.

Sleep is therefore a time of negotiation, but not only between partners, as studies have already shown (Meadows et al. 2008; Venn 2007; Hislop 2007; Zarhin 2016b). Rather, the fact that partners’ support of CPAP use did not trump patients’ disdain for it indicates that sleep is also a time of negotiation between the individual sleeper, his or her body, technology, and society. Thus, whereas much research has focused on the physiological and functional aspects of sleep, such as its effects on brain chemistry, wiring, and neural network maintenance (e.g., Bell-McGinty et al. 2004; Bernier et al. 2009), this study sheds light on the symbolic, social, and personal aspects of sleep. Finally, this article contributes to sleep research as well since many biomedical studies attempted to explore the reasons for the high nonuse rates of CPAP (e.g., Liistro, Aubert, and Rodenstein 1995; Hrubos-Strom and Nordhus 2009; Poulet et al. 2009) but neglected to consider the ways in which this technology affects patients’ self and subjectivity as a possible cause of nonadherence.

This study opens up a number of additional questions: what are the implications of the exchanges of agency in sleep for accountability? Who should be held accountable for the nonuse of CPAP? What is the role of other actors and actants involved in this network, including, for example, the sleep specialist, the family doctor, developers of OSA treatments, as well as diverse therapeutic technologies available for OSA such as dental appliances. Future research would do well to address these questions.

Footnotes

Acknowledgments

I am grateful to Peter Conrad, Sara Shostak, Jose Brunner and Ofir Abu, as well as the anonymous reviewers for providing valuable feedback on earlier drafts of this article. I owe special thanks to editors Edward Hackett and Katie Vann for their insightful and useful comments.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

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