Enacting objects and subjects in a children’s rehabilitation clinic: Default and shifting ontological politics of muscular dystrophy care

Abstract

In health care clinics, problems are constructed through interactions, a choreography of human and non-human actors together enacting matters of concern. Studying the ways in which a body, person, family, or environment is objectified for clinical purposes opens discussion about advantages and disadvantages of different objectification practices, and exploration of creative ways to handle the diversity and tensions that exist. In this analysis, we explored objectifications in a Canadian neuromuscular clinic with young people with muscular dystrophy. This involved a close examination of clinical objectification practices across a series of 27 observed appointments. We identified the routinised clinical assessments, and argue these embed a default orientation to how to intervene in people’s lives. In this setting, the routine focused on meeting demands of daily activities while protecting the at-risk-body, and working toward an abstract sense of an independent future for the person/body with muscular dystrophy. But the default could be disrupted; through our analysis of the routine and disruptions, we highlight how contesting visions for the present and future were consequential in ways that might be more than what is anticipated within rehabilitation practice.

Keywords

enactment ethnography objectification rehabilitation subjectification

Institutional objects are of interest within the humanities, social sciences, and health sciences, though in different ways. Objectification practices may be a way to know the body in medicine, or study how institutional practices shape bodies and subjectivities (Mayes, 2016), or engage in emancipatory research (Trede, 2012; Williams, 2006). One stream of inquiry into clinical objectification practices engages the medical sociological turn toward materiality (Mol, 2003; Williams, 2006). This approach emphasizes that reality is enacted through practice, and varies accordingly, rather than being transcendent or fixed (Law, 2015; Mol et al., 2010; Williams, 2006). In this tradition, the clinic is a place where particular types of objects come into being, however temporarily, in ways that influence more than intended.

In rehabilitation clinics, like other clinical settings, assessment and treatment practices enact objects of concern, including current or anticipated future problems (Mol, 2003; Struhkamp et al., 2009). In The Body Multiple, Mol (2003) highlighted how clinical objects of concern – in her example, atherosclerosis – come into being in different hospital departments, through different practices and technologies. Rather than a stable, singular reality just waiting to be uncovered, what is real is brought into being through everyday sociomaterial practices (Mol, 2003). What is real is an effect of ‘contingent and heterogenous enactments, performances, or sets of relations’ (Law, 2015: 127). Studying the enactment of objects, rather than assuming their stability, opens a line of questioning into what Mol (2003) calls ‘ontological politics’: ‘a politics that has to do with the way in which problems are framed, bodies are shaped, and lives are pushed and pulled into one shape or another’ (p. viii). We consider repetition of clinicians’ actions as reflecting default ontological politics of the clinic – a routinized way that the clinical team directs the care of the body and the family, unless disrupted in some way.

Ankle range of motion, fall risk, hyperactivity: these and other objects are enacted in rehabilitation practice, and acted upon when deemed a concern. Studying institutional objectifications is important because they can shape the trajectory of a person’s life, including in unintended or poorly-understood ways (Mol, 2003). Governmentality scholars argue institutional activities shape identities, through contact with experts’ norms and knowledge (Dean, 2010). For example, in rehabilitation clinics, disabled children can experience a biomedical view of their bodies as abnormal and deficient (Bekken, 2014; Gibson and Teachman, 2012). Repeated over time, clinical tests that emphasise deficits shape identities (Bjorbaekmo and Engelsrud, 2011). But these outcomes are not inevitable; different practices may have different effects.

In the following analysis, we examine attempts to enact clinical objects in a Canadian outpatient neuromuscular rehabilitation clinic, where young people with muscular dystrophy met periodically with rehabilitation professionals. We do so to answer two questions, to study ontological politics at work in a children’s rehabilitation clinic: (1) What objects are brought into being? (2) What consequences follow? We choose to foreground variation in practice, in line with Mol’s (2003) proposal that describing variation is an intervention; studying objectification practices, in their variation, can support creative ways of reflecting on how to manage tensions that arise in the clinic.

Using ethnographic data from clinical appointments, we explore the multiple effects produced by objectification practices in appointments involving three young people. One of these cases exemplifies the repeated pattern of objectifications, observed across many appointments. We argue that the routinised practices communicate a default ontological politics of the clinic, based on a sense of a ‘good future life’ characteristic of rehabilitation discourse (Gibson, 2016). Through the cases, we highlight how attempts to create particular clinical objects also calls on the humans involved to be particular types of subjects, though maintaining the identity of objects and subjects takes ongoing work and may be contested. We review two cases where contestations disrupt the routine, in different ways. We argue that disruption of routines redirects the ontological politics of the clinic, in ways that are neither pre-determined nor under the control of any single actor.

Duchenne muscular dystrophy and rehabilitation

Duchenne muscular dystrophy (DMD) is a condition characterised by a loss of muscular strength. Over time, due to this declining physical strength, people with DMD increasingly use assistive technologies and personal assistants to accomplish daily activities. Their lives are shaped by more than bodily changes and practical challenges; emotional impacts of interventions, stigmatisation, and the possibility of dying young are all present in their lives. The latter topics are not consistently addressed in health care settings or are addressed in highly medicalised ways (Abbott and Carpenter, 2015; Abbott et al., 2017).

In Canada’s publicly-financed, universal health care system, rehabilitation professionals routinely provide health care to people with DMD. Rehabilitation disciplines assist individuals to achieve and maintain ‘optimum functioning’ (Struhkamp et al., 2009). In children’s rehabilitation, common clinical goals are attaining, maintaining, or approximating typical function according to milestones of ‘normal development’, which are assessed via a series of checklists, scales, norms, and percentiles (Gibson, 2016; Gibson et al., 2015). As children age, they are expected to achieve greater physical and social independence (Gibson, 2014, 2016). This assumed trajectory is reiterated in the narratives of young adults with DMD; they orient to a ‘successful future adulthood’ that is out of reach (Hamdani et al., 2015).

Objects, subjects and ontological politics

We use the terms objects and objectification as described by Cussins (1998), Mol (2003), and Timmermans and Almeling (2009). Each theorise the crafting of clinical objects – such as ankle range of motion or fall risk – as temporary, sociomaterial practices, rather than as stable entities: ‘objects come into being – and disappear – with the practices in which they are manipulated’ (Mol, 2003: 5). To come into being, there must be a process of objectification. Objectification involves a choreography of humans and non-humans (Cussins, 1998; Mol, 2003). Neither the actors involved, nor the consequences of objectification, can be established a priori. Instead, they are revealed in practice. Heterogeneous elements, such as statistical norms, medico-legal standards, physical objects (e.g. weight scales), bodies, and verbal exchanges are involved in enacting objects of clinical concern.

In addition, enacting objects calls upon the humans involved – patients, family members, and clinicians – to be certain types of subjects. The term ‘subject’ speaks to the ‘certain kind(s)’ of people that are relevant to the situation, influenced by the particular space in historical context (Heyes, 2011: 159). A competent-clinician, for example, is a relevant subject position in Canadian health care. Like objectification, subjectification is an interactive social and material process, situated in a time and place (Butler, 1993; Dean, 2010). Attempts to position one’s self or someone else as a particular type of subject (such as a knowledgeable-parent or caring-clinician) may proceed smoothly or be resisted. While objectification is often interpreted as negative, we start from the assumption that the effects of objectification and subjectification vary and are not known in advance. From other scholars’ work, it is clear that enacting particular objects and subjects can enable patients to achieve a desired end, while in other situations, worsen life in some way (Bekken, 2014; Cussins, 1998; Zarhin, 2018).

Our analysis in a children’s muscular dystrophy clinic highlights how objects are made real, brought into being through practices, and consider the effects of those objectifications – including how they position subjects. We foreground the practicalities, materialities, and actions that enact objects. We proceed without assuming coherence or finality. Instead, we preserve the fuzziness and messiness that exists in practice (Law et al., 2014; Mol, 2003), appreciating that non-coherence can be functional and manageable. We explored objects made in the clinic, and what these enacted objects accomplished, in terms of positioning human subjects and influencing trajectories of care.

Methods

Data collection and participants

The data analysed here was generated within a broader ethnographic study, a participatory methodology pilot aimed to foster clinicians’ reflexivity about health services provided to children and youth with muscular dystrophy (Duchenne, Becker, or intermediate type). We conducted the methodology pilot in two multidisciplinary, outpatient, neuromuscular disease-focused pediatric clinics in urban children’s hospitals. Data collection involved observations of clinical practice, and other methods. The participating hospitals’ Research Ethics Boards approved the study. All participants consented to participate verbally and in writing.

The present article is a separate analysis of the observational data from the larger study. We focus on the 27 fieldnotes collected in one clinic; each fieldnote covers the duration of a family’s visit to the clinic. We analyse the fieldnotes from the site where we observed more appointments (27 vs 8), and were able to observe three participants longitudinally. The longitudinal data, in particular, allowed us to better explore the consequences of particular objectification practices.

The ethnographer observed appointments involving eighteen young people with muscular dystrophy and their families between February 2016 and May 2018. Fourteen families were observed once (including two brothers seen simultaneously). Three young people and their families agreed to longitudinal observations – one for three appointments, the other two for five. The ethnographer wrote field notes in a descriptive style, attending to speech, bodies, movements, touch, and non-human objects involved in the action unfolding over time, with occasional ‘still-life’ sketches added (Emerson et al., 2011).

Young people attended the clinic approximately every 4 months. A parent or guardian joined them, sometimes with additional family members or caregivers. Appointments ranged from 2:30 to 4:40 hours, and involved a median of six clinicians (range: 4–8). Nineteen clinical team members were observed, including physicians (DR), respiratory therapists (RespTh), nurses (RN), physiotherapists (PT), occupational therapists (OT), a social worker (SW), a clinical coordinator (CC), and a recreational therapist (RecTh).

All names used in this paper are pseudonyms, with clinicians marked by their professional designation and family members by their relation to the patient.

Data analysis

Objectification and subjectification are both sociomaterial processes. Our analysis bridges insights from Mol’s (2003) enactment with ethnomethodology and related interactional theories to analyse the fieldnote descriptions of clinical appointments.

The first author started by identifying sequences of action focused on one topic in each of the fieldnotes. Within a sequence, she noted both the topic, and the reactions of the people involved. She did so because in human interactions, people hold each other accountable for departure from norms – a core insight of conversational analysts (see Heritage (1984) and built upon by post-structuralists (e.g. Butler (1993). Thus, agreement and disagreements take recognisable forms, which aids intersubjective understanding (Heritage, 1984). Deviations from the expected norm elicit forms of sanctioning, accounts and/or repair work (Butler, 1993; Garfinkel, 1967; Scott and Lyman, 1968). Each of these types of talk are, then, ways to mark contestation in interaction.

The first author looked for accounting, sanctioning, and repair work, to identify topics that elicited disagreement within the clinical appointment. She noted which topics proceeded with and without contestation in each appointment. When signs of disagreement arose, she examined what preceded the disagreement, and if/how tensions were resolved. That is, agreements and disagreements could arise during the enactment of a particular object (such as body weight, as will be exemplified later), and/or during attempts to position oneself or others – to apply culturally available subject positions, such as ‘good parent’ or ‘caring clinician’, in the interaction (Davies and Harré, 1990). Just as attempts to objectify can go awry, attempts to position oneself or another as a certain kind of subject is never assured; like objects, it is through interaction that subject positions are negotiated (Davies and Harré, 1990).

In conducting the analysis, the first author attended to both objectifications and subjectifications, noting which proceeded smoothly or were contested. What human and non-human actors were involved? When was there friction in enacting an object or invoking a subject position? When friction was observed, what produced it (e.g. equipment failure; verbal or non-verbal actions)? What was resisted against (e.g. the implied positioning of a parent as failure; the ramifications for the particular objectification on the future or family)? How did topics change? When did objects reappear, and to what effect? She compared across appointments and across patients to identify clinical routines, as a way to appreciate the default ontological politics in the clinic, as well as unusual appointments, to explore what disrupted the routine. Co-authors helped with analytic refinement.

Findings

We present our findings through appointments with three families. The first, Cameron’s appointment, exemplifies an organizational routine followed repeatedly across most of the observed appointments (wherein an organization routine is defined as ‘a repetitive, recognizable pattern of interdependent actions, involving multiple actors’ (Feldman and Pentland, 2003: 96)). We consider that repetition of clinicians’ actions as reflecting default ontological politics of the clinic – that is, a routinised way that the clinical team directs the care of the body and the person, unless disrupted in some way. The following two exemplars, Kyle and Terry, highlight how interruptions of the routine re-directs the ontological politics of the clinic, in ways that are neither pre-determined nor under the control of any single actor.

A note about a writing choice: we have opted to hyphenate between words as a way to highlight clinical objects or subjects that are the focus of action during a sequence in an appointment.

Cameron: When objects clash with subjects

We observed Cameron once. He was an 8 year old boy who attended the clinic with his mother. In this appointment, many bodily objects were enacted, such as pulmonary function and joint flexibility, as well as how he/his body¹ moved through space. Cameron often co-operated with clinicians to enact the objects of concern, moving his body as requested. Such objectification processes could have playful or subversive elements:

As ChantalMother and LisaRN talked, SharaPT made her way to the opposite side of the bed and asked Cameron to time her as she measured his flexibility. Cameron happily laid down on the bed, holding the stopwatch. He started the stopwatch and began to give SharaPT the time every few seconds. She would comment on the time as she worked on Cameron. Every now and then, mom would glance over as she continued talking to LisaRN.

The physical tests continue, while the nurse talks with Cameron’s mother. Eight minutes later, the nurse leaves the room:

SharaPT then asked Cameron to “scooch forward on the bed”, so that his legs were hanging off the end. As she continued working on Cameron, he continued telling her how many seconds it was taking (from the stopwatch). The number was quite high so it made everyone laugh. As SharaPT worked on Cameron, he remained focused on the time on the stopwatch. It seemed to make things move along much quicker for SharaPT.

The bed works in concert with the physiotherapist’s and Cameron’s bodies to produce the object of joint flexibility. Cameron’s timing of the physiotherapist subverts the clinical, evaluative gaze, to a point. The timing and Cameron’s reports seem to speed up the therapist’s assessment, but do not block the enactment of joint-flexibility. Cameron’s playful addition changes but still allows the enactment of the object of joint-flexibility.

Frictions in objectification were most common in Cameron’s appointment when clinicians emphasised the ‘at-risk-body’ above all else. The at-risk-body is an object with negative implications for Cameron-the-playful-child subject and for family life:

After talking about recess, the importance of taking breaks, SharaPT brought up the trampoline. SharaPT started with, “Okay, here’s the thing,” and mom immediately made a face like she didn’t want to hear anything bad about the trampoline. SharaPT talked about the how his ankles had rotated a bit. Mother jumped in and said that Cameron wears his shoes, which could provide support. SharaPT said, “Not really support for his ankles.” Mother said she did not want to deny him the trampoline because “he really loves it!” SharaPT nodded but then began to list some of the things she is concerned about such as the pressure on his ankles and compression fractures. She added that she appreciates that he liked it, but she’s very concerned about the compression fractures. ChantalMother said that she did not think about that, she only thought about his ankles. ChantalMother said that it might be something they would have to rethink, and looked a bit upset about this as she looked over at Cameron, who was still playing with the card and his book. SharaPT then added, with sympathy, “It’s not an activity I’d recommend, but it’s up to you three. And I appreciate where you’re coming from.” Mother nodded but she didn’t look happy with the outcome of the discussion.²

ChantalMother resists the at-risk-body in multiple ways: her facial expression, verbal interruption to address the physiotherapist’s stated concern, and reason for not wanting to deny Cameron play. Her attempt to position herself as a knowledgeable parent (showing knowledge of the at-risk-body when speaking about his wearing shoes) is disrupted by the physiotherapist adding to the list of bodily risks. By doing so, the physiotherapist reinstates herself as expert, thinking of potential future problems beyond what his mother has considered. Despite ChantalMother’s resistance to the proposed topic, the therapist proceeded, arguing for protecting the object of Cameron’s at-risk-body, while ChantalMother emphasised the subject of Cameron-as-playing-child. These two Camerons were in tension, as was ChantalMother’s subject position. The physiotherapist’s unsolicited recommendation positions ChantalMother as a potentially neglectful parent. Simultaneously, Cameron is reminded of his different body.

Preserving the at-risk-body was invoked again later in the appointment in a conversation about mobility equipment choices. An occupational therapist (EveOT) suggested planning for a wheelchair purchase. After ChantalMother hesitated (‘We haven’t decided yet’), the therapist described how to test and purchase a wheelchair, and why it would be helpful. ChantalMother clarified that he has tried a wheelchair at a museum, and liked it, but she was still undecided, adding that some mothers in a Facebook group chose scooters over wheelchairs:

EveOT’s eyes went big when mom said “Facebook group”. EveOT said “We don’t recommend” the scooters. She indicated that they are not great for support and that the manual wheelchair that is designed specifically for each person would be better. She added, “From a safety perspective, it’s [the scooter] not great.” She began to describe how the scooter does not provide support for the upper extremities and they are often “tippy”. ChantalMother looked very concerned as EveOT spoke against the scooter. ChantalMother wondered aloud why all of the moms on this Facebook group were getting a scooter for their children.

ChantalMother’s proposal of a scooter via advice from an online group, and attempted self-positioning as a knowledgeable parent was again contested by a therapist, communicated through facial expressions, physical risk discourse, and an invocation of a collective authority (‘we’) specific to her recommendation. The therapist’s resistance seemed to make a difference: with clinicians later in the appointment, ChantalMother spoke only about procuring a wheelchair, though she deferred the timing to the future.

Over the appointment, ChantalMother repeatedly described Cameron as a playful, energetic, ‘rough and tumble kid’, while clinicians enacted and emphasised the object of at-risk-body, in decline. This tension between being a fragile body-with-DMD in need of protection, and a young person with desires to act otherwise in the world, was observed in many appointments. We present the ontological politics developed in Cameron’s appointment as exemplary of the patterns we repeatedly observed across the data set, emphasising protection of the body, preservation of function, and improved probability of a longer life above other priorities. Desires to ride all-terrain vehicles, play sports, or obtain a driver’s licence – to live in particular ways, to be a particular type of subject – were often pitted against enactments of an at-risk-body (an object).

But clinicians’ emphasis of bodily protection did not always create friction. In the next example, clinicians and parents do not enact the child’s pleasures as problems, but as relevant to clinical decisions. This shifted the ontological politics of clinical work, making life enjoyment more central to clinical recommendations.

Kyle: Crafting alignments of objects and subjects

Kyle’s appointments are striking among our data set; clinical activity and decision-making centred more on how DMD was lived than bodily manifestations of the disease. Over five observed appointments with Kyle, an 11/12-year-old at the time, the clinicians (and ethnographer) learned about his likes and dislikes, sense of humour, and creative endeavours. Mostly, this was through his parents’ or his own (mainly) unsolicited interjections. These interjections shifted the trajectory of appointments, though the enactment of bodily objects continued as per the clinical routine observed across appointments. Sometimes the artist, comedian, or inquisitor, but also a child who is anxious about dying: these different ‘Kyles’ were welcome in the clinic.

In each of the five observed appointments, KristaMother brought attention to something important happening with the family, for example, an upcoming vacation, or a new activity the whole family enjoyed. For example, in the first observation, KristaMother asked one clinician if she would like to watch a short film Kyle made. Kyle-the-artist was made salient through his mother’s bid, a phone, a video – and a momentary suspension of clinical objectification practices. Later in the appointment, a different clinician asked to watch the film after greeting Kyle and his family, re-inviting Kyle-the-artist into the encounter, in a departure from clinical objectification routines observed in most appointments. At another appointment, KristaMother shared pictures of a new outdoor activity that the entire family enjoyed and could participate in, something that had long been a challenge. Doing so brought Kyle-as-a-member-of-a-family into view, disrupting objectification processes momentarily.

Kyle also frequently interjected in ways that suspended clinical routines. Similar to Cameron, Kyle’s interjections could subvert or distract from the bodily objectification at hand, such as joking about how to improve medical test results, or making comedic entrances into rooms. In contrast to others we observed, Kyle spoke more openly about bodily decline and dying. Sometimes, clinicians treated such utterances as passing statements, not changing the clinical activity in an observable way. In others, Kyle’s comments changed the focus.

In the following example, Kyle shifted a discussion about the body-with-DMD to a person-facing-death. In his opening comment, Kyle positioned himself as knowledgeable about the body-with-DMD, which the physician confirmed before giving more details:

CaraDR said that once they did the x-rays they will take it from there. Kyle looked up from his iPad and said curiously, “I thought my muscles get weaker?” CaraDR turned to Kyle and said he was correct. She explained what happened to his muscles and his bones. CaraDR’s explanation was clear and very simple but not dumbed down. Kyle would interject and “Oh!” every now and then. He would also look down at his iPad. CaraDR then paused and said that the magic age of 18 is when things change. [I think she might have been referring to transitioning to adult care.³] As soon as she said that, Kyle looked up and very matter-of-factly said, “For some reason, I don’t think I’ll turn 18.” KristaMother immediately got teary eyed and KarlFather’s face became very red. He also looked down quickly and then back up after a few moments. Kyle, though, looked very curious. CaraDR paused, then said, “I think you will.” Kyle asked curiously, “Really?” CaraDR said, gently, “Yeah.” CaraDR paused again and then asked, “Do you want to talk about it?” Kyle said, “I just cry and talk about it randomly and then I stop”. CaraDR nodded and smiled. She looked at Kyle and said that he could talk to anyone on the team or anyone else he felt comfortable talking to. Kyle looked up from his iPad and nodded. She then turned to KristaMother and KarlFather and said that they could also talk to anyone on the team any time they needed to. Both silently nodded with a smile. There was a long pause, broken by Kyle, who said with a little sarcasm, “It’s really quiet!” CaraDR smiled and mom said, “Yes” with watery eyes. Kyle went back to his iPad, sort of signaling that he didn’t want to continue the conversation further.

This is an unusual clinical object in our observations – the finite body. Kyle’s musing that he will not live to adulthood initiated the re-direction in the dialogue, from the body-with-DMD to Kyle, a person-facing-death in focus. The interaction that follows shifts the subject positions of the physician and of Kyle. The physician is no longer the expert with quick, ready answers. Instead, she is uncertain and emotional, her teary eyes resonating with others in the room. Silence is used throughout by other speakers, allowing Kyle to lead the conversation where he chooses. Such an unusual object, and shifting subject positions, make for a difficult conversational transition, marked by a long pause, a comment drawing attention to the changed dynamics, and a shift in visual attention. In this and the related examples across his appointments, it is Kyle or KristaMother who shifted a routinely addressed clinical object (the body-with-DMD and its functionality) to his future death – not clinicians.

In most of the observed interactions, clinicians aligned routine recommendations to what they knew about Kyle’s preferred activities or the family’s needs. For example, a therapist reviewed stretches with Kyle for his arms, explaining these are important given his interest in film and work on the computer. But there were moments when the routine clinical object (the body-with-DMD) comes into conflict with subject positions (the child-experiencing-pleasure), as they did with Cameron and other young people in the clinic. But with Kyle, in an exception to the repeatedly observed pattern in other appointments, most clinicians emphasised his pleasure and experiences as important enough to prioritise over the at-risk body:

KristaMother talked about the new personal support worker they have and how well he and Kyle got along. She then paused and said that when they go swimming, he will toss Kyle around the pool. She looked worried. CaraDR smiled and said she was not worried at all. She said she wanted Kyle to have fun. She said that even if they found small fractures, they would deal with it. She didn’t want Kyle to stop having fun. KristaMother looked relieved. Kyle kept his eyes on his iPad.

The physician verbally recognised protecting the body had tradeoffs which could make life harder. By doing so, she positioned herself as a clinician who values fun, despite possible physical risks. She oriented care recommendations not only to a safe(r) body, or an abstract ‘good life’, but on Kyle’s experiences, as Kyle-who-has-fun. The ontological politics, the way clinicians push and pull at Kyle’s life, were different than they were with Cameron and most others we observed.

Across Kyle’s five observed appointments, routine clinical objectifications were completed on the body-with-DMD, but the results were often used differently than in appointments with most other young people. The efforts made by Kyle and his parents expanded Kyle’s subject position beyond child-with-DMD to the artist, comedian, or person-facing-death. Such shifts in subject positions were an active presence in appointments. The clinicians’ orientation to those more specific subject positions shifted the ontological politics of the clinic, changed how objectifications were used to guide clinical action. Much of the work of the clinic oriented to a specific imagined future for Kyle.

Across appointments observed, a personalised vision of an imagined future guiding clinical care was more the exception than the typical case in the clinic. In several observations, the subject position of the child became an object of clinical scrutiny and judgement. The final case offers a striking example.

Terry: When subject becomes object

Terry was 13 years old when we first observed his care, and 15 at our third and final observation. He had only attended this clinic once before our initial observation. TracyMother joined him at appointments. Over the three observations, the subject position of Terry-the-difficult-person was increasingly marked as a problem to be solved. This happened, in part, through attempts to enact bodily objects routinely constructed in the clinic.

Enacting the object-body for clinical assessment often involved friction, within and across Terry’s appointments. Weighing was particularly contentious. The issue was not measuring weight per se, but to the material equipment proposed to produce the clinical object of weight (a fabric sling attached to a ceiling lift and scale, where weighing involves lifting the person/body into the air), and to the imagined future of moving Terry using similar equipment at school and home.

In the first appointment observed, an occupational therapist, physical therapist, and student prepared to weigh Terry.

Terry looked a little unsettled to see more people in the room. He looked at TracyMother and she looked at him, placing her hand gently on the back of his head and smiling. It looked like a reassuring smile as Terry turned his gaze to all of the clinicians in the room. BreanneOT then talked about the lift and that they would try it that day because mom cannot continue to lift Terry and he’ll need it when he goes to high school….BreanneOT moved the sling in her hands as she described it [sort of like parachute material] and that it was safe. She added that one of the reasons they needed to try this was so that mom didn’t have to lift him too much. He sat watching them and looked a little worried but did not say anything. BreanneOT squatted in front of him, showing Terry the sling and asked him if he wanted to touch it. Terry pulled his hand forward and sort of patted the sling but did not make any other effort to hold it nor did he ask any questions. All he said was, “Ah, I don’t feel like it.” He sounded very upset and his mother looked at him with concern. BreanneOT said, “Sure” and continued to try to get him to think about using it.

Terry continued to argue against using the sling, while the occupational therapist reassured him she would not lift him high off the chair. While Terry verbally resisted, BreanneOT engaged him in a bodily choreography to place the sling under his body:

BreanneOT asked him to lean forward as she placed the sling down his back. He obeyed her direction. She then slowly leaned him back and asked how that felt. He nodded. She then asked Terry how he felt with the sling on his back. “Slightly scared. Kinda scared.” BreanneOT looked up quickly and said, “That IS a good a reason.” She then showed him again how high she would be lifting him off the chair. Terry looked at her and asked, “That’s it?” BreanneOT said, “Yes, that’s it.” His facial expression softened and so it looked as though he seemed a little okay with it. She then showed him the ends of the sling and where they would hook on to the bar that would calculate his weight.

Terry was not reassured for long. He continued arguing against this method of weighing during a lengthy exchange. His ongoing objections and emotional responses (looking ‘absolutely terrified’, in the ethnographer’s view) were overruled. Terry’s body was weighed, objectified, against Terry’s verbal resistance and scared facial expressions.

Shortly after, the therapist re-introduced the imagined future method to transfer Terry using a ceiling lift at school and at home. She asked how he gets on and off the toilet at school. He remained silent, not participating in the dialogue the therapist seeks. His silence did not deter her; she followed-up by asking whether his mother comes to school. He nodded. She then spoke about the ceiling lift at his school he could use, and how his mother would no longer need to come to school to help him. TracyMother interrupted, telling the therapist that this was not Terry’s first experience of a lift. Ceiling lifts and slings are not just physical tools to move one’s body through space or be weighed, but an experience – in Terry’s experience, a bad one. Terry’s past was present, though not understood to be so by the clinicians until after weighing was completed.

Through this lengthy exchange, Terry’s relations with his mother were made into a problem in need of a solution, by both Terry’s mother and the therapist. Terry-as-less dependent-on-his-mother was the proposed future, which Terry repeatedly rejected through questions (‘why?’) and comments (‘I don’t feel like it’; ‘I will never get used to it’). Over subsequent visits, Terry’s dependence on his mother, lack of friends, and computer-based hobbies became foci of clinical work, as objects to be worked upon.

In the second visit we observed, Terry met with new professionals – a recreation therapist, a psychologist – despite his ongoing protestations and non-engagement. This pattern intensified by our third observation of Terry’s appointments, fifteen months later. Throughout, Terry’s physical body continued to be assessed, but the time spent on topics shifted. The subject, Terry-the-future-person, became a clinical object through discussions about friendships, social activities, and future employment. Similar to Kyle, one objectification process could shift into another. But for Terry, this movement worked against his interjections.

For example, what started as a description of a chair at home shifted into a discussion of Terry not being the desired type of subject, at home or at school, a positioning Terry refused to engage. The therapist first proposed bodily safety as the core concern, through questions about sitting in an office chair he preferred to his wheelchair. Her leading questions, such as ‘do you push the chair up against the wall so it doesn’t roll away, given the chair doesn’t have brakes’, implied that both Terry and his mother were risking his body. His mother defended herself, speaking about her plan to get him a better manual wheelchair. Similar to weighing, Terry simply stated ‘I know I really won’t use it’ and ‘because I don’t want to’. TracyMother implied his motivation was that a wheelchair would mean he is not like everyone else; in restaurants, manual wheelchairs do not fit easily at tables.

There was an audible pause before SharaPT spoke. She looked at Terry and suggested some benefits of having the manual wheelchair, such as moving himself around the house when he wanted something. She said he could be more independent. She paused and asked, “Is that important to you?” Terry shook his head. SharaPT asked Terry if he would rather call someone to help him. Terry said “yes.” TracyMother smiled but shook her head looking at Terry and then looked at SharaPT. SharaPT then asked Terry, curiously, “Any reason you like to be at the desk?” Terry just looked blankly at SharaPT. TracyMother jumped in and said that he just wants to sit alone at the desk. She said that even if they all eat at the table having dinner, Terry wants to sit alone at the desk. TracyMother didn’t know why he did that but that she didn’t like it. SharaPT didn’t question any further. She said she wanted to ensure that it was working for the family, whatever they chose. She said, “It’s just so we can support you.” SharaPT looked directly at mom as she spoke. Mother smiled and tears filled her eyes. SharaPT smiled. Terry looked between the two, expressionless. (visit 3)

Bodily safety, function, and dependencies were the shifting foci of clinical attention. His desire to be ‘like others’ was unaddressed; instead, the therapist asked if he values ‘independence’ (i.e. shifting relations of dependence from people to technology). This question asked him to declare himself a particular kind of subject – the kind of person who values independence – with the preferred answer introduced immediately prior. It is not the body-with-DMD that is the focus of clinical attention here; it is the question of who is he, what he values in his life, and how his values are reflected in his preferences for mobility.

With Terry, tests were not just tests of bodily-objects, and questions were not simple requests for information. Weighing was not just weighing, and talk about bodily safety focused on more than the body-object. Difficulties enacting the body-objects of clinical concern shaped the enactment of Terry-the-person as problem. Terry was called upon to be a certain kind of subject, one who has more connections with other people and his community, and relies more on technology than his mother to accomplish particular tasks. Terry resisted these calls, but was not able to refuse all of what was asked of him. His desires and needs were not the only important ones.

With Terry, the routinised ontological politics of the clinic – which emphasised protecting the body-with-DMD – remained, but with the addition of addressing problems with Terry-the-recalcitrant-person. What started as a subcurrent in the first appointment developed over time. In the third observation, he was offered psychological support and life skills coaching, both to help Terry manage his ‘anxieties’ about change. These offers oriented to other imagined ways for Terry to exist in the world. The lifts, wheelchairs, and proposed new social relations all meant he would be away from his mother, away from the computer, and in a world he did not seek. His mother’s and clinicians imagined future for Terry took precedence, with the exception of a ceiling lift, which Terry was still resisting in the third appointment.

Discussion

Our study of clinical objectification practices highlights the ontological politics at work in a Canadian children’s neuromuscular rehabilitation clinic. Routine ways of objectifying clinical objects give insight into the ontological politics of the clinic, as do contestations in practice. In this setting, the repeatedly observed clinical pattern of objectification embeds logics of biomedicine and ‘successful’ adulthood operating in concert, made commensurable through a domestication of difference (Law et al., 2014). Biomedical knowledge and interventions served the vision of future, potential adulthood. Clinicians addressed the progressive nature of DMD in part through biomedical interventions meant to stave off physical decline and extend longevity. Clinicians routinely recommended bodily interventions: breathing exercises, medications that slow muscle deterioration, and equipment to move a person/body safely through space (e.g. wheelchairs; ceiling lifts). Discussions of trampolines (Cameron) and chairs used at home (Terry) orient to bodily protection. This resonates with Struhkamp et al. (2009) study of neurorehabilitation with adults in the Netherlands. They found that rehabilitation practices orient to the possible, unknown future, folding time by including uncertain futures in the present to guide clinical work. Rehabilitation professionals work to avoid negative possible future outcomes and enable current capacities by ‘tinkering’ with all that might make a difference. Protecting the at-risk-body now, while anticipating the future, was central to clinical routines. Clinicians tinkered with the physical body and relations of dependence in our Canadian clinic, similar to Winance’s (2010) study of French rehabilitative care.

Also characteristic of rehabilitation is the observed emphasis on future ‘independence’ with young people for whom future dependencies are more or less predictable. In rehabilitation, independence means reduced dependence on people through increased dependence on technologies to complete tasks. Recommendations included adaptive equipment, such as ceiling lifts, and programs that teach ‘life skills’, such as how to take a bus or write a resume. Independence is a concept around which practices cohere. In children’s rehabilitation, independence links to the concept of ‘developmental progression’ (Gibson, 2016; Hamdani et al., 2015). For a child to fail to gain independence is to fail to develop. Thus, independence reflects normative assumptions about what constitutes a good life. In interview studies, normative assumptions about the ‘good life’ create narrative and identity problems for those with progressive conditions such as muscular dystrophy (Gibson, 2016; Hamdani et al., 2015). Here, we see how the future ‘good life’ and ‘failure to progress’ both inform clinical routines.

The ontological politics reproduced repeatedly through the observed clinical routine created problems for some of those with DMD, prioritising the needs of the diseased object-body over those of the subject-child. Clinicians routinely recommended giving up trampolines, all-terrain vehicles, and other ‘rough’ activities. In Cameron’s appointments, like many others observed, clinicians tamed friction by restating norms, including through re-positioning parents as potentially neglectful if not attending more to their child’s bodily protection. The default ontological politics, which aimed to protect the body and enable function, were upheld in part through calls to be a certain type of subject.

The ontological politics enacted were not inevitable, but the result of the choreography of humans and non-humans involved in practice. For example, Cameron’s future visits may differ from the one we observed, as the result of any number of changes in that choreography. Kyle and Terry’s appointments offer different resolutions to frictions, shifting the clinical objects of focus and thus, the ontological politics of the appointment. Terry’s expressed resistance to the changes sought by clinicians and his mother became an object of clinical attention. In this sense, Terry’s appointments exemplify Shaw’s (2018) argument: ‘“Rehabilitate”, from the Latin habilis, fans out into different meanings: a “making able” of the physical body, a “making proper” of behaviour, a “making manageable” by others. These pull in opposite directions’. Terry’s resistance is marked as improper, unmanageable, and too demanding on his mother. Terry’s interjections shifted the politics of the appointment, but not in the direction he sought.

But the ‘different meanings of rehabilitation’ did not always pull in opposite directions. Disruptive interjections could take the form of those introduced by Kyle or his mother, bringing family life and different subject positions into the clinical space. Kyle as artist, sibling, comic and a person anxious about dying and death were made salient through their interjections. Across Kyle’s appointments, objectification practices were mainly consistent with the routine, and ‘independence’ held as a vision for the future, but the ontological politics shifted in response to a more specific vision for the future. The friction and disruption to clinical objectification routines resulted in clinicians being less insistent on protecting the body-with-DMD.

Conclusion

This study explores the ontological politics of rehabilitation practice in a children’s neuromuscular practice – specifically, in a Canadian team setting where young people with Duchenne muscular dystrophy met clinicians of differing professions. Through close examination of ethnographic fieldnotes, our analysis makes visible how routine objectifications (re)produce a default ontological politics, which could be disrupted through contestation. By examining contestation and friction in clinical appointments, our analysis highlights how attempts to enact objects (and relatedly, subjects) are only attempts, never assured to proceed the way a particular actor may prefer, and in ways that are consequential for the ontological politics enacted in care.

Footnotes

Acknowledgements

We thank Jenny Setchell, Laura McAdam, Bhavnita Mistry, and Donya Mosleh, colleagues on the larger study of which this analysis is a part. Additional thanks to Natalie Ward and Louise Chartrand for helpful comments on earlier drafts.

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) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the AMS – The Phoenix Project; Ontario’s Academic Health Science Centre Alternate Funding Plan – Innovation Fund; and the Bloorview Children’s Hospital Foundation Chair for Childhood Disability Studies.

ORCID iD

Patricia Thille

Notes

Author biographies

Patricia Thille is an Assistant Professor in the Department of Physical Therapy at the University of Manitoba. Her research mobilizes critical and practice theories to study stigmatization, health behaviour change, and chronic disease management in primary care and rehabilitation settings.

Thomas Abrams is an Assistant Professor of Sociology at Queen’s University, teaching and writing on disability, social theory, and social inequality.

Barbara E Gibson is a Professor in the Department of Physical Therapy at University of Toronto and a Senior Scientist in the Bloorview Research Institute at the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. Her research examines the intersections of social, cultural, and institutional practices in producing health, inclusion/exclusion, and identity with disabled children and young people.

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