Say ‘trouble’s gone’: chronic illness and employability in job training programmes
Emma K. Tsui, Department of Health Sciences, Lehman College, City University of New York, 250 Bedford Park Boulevard West, Gillet 422D Bronx, NY 10468, USA
The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees’ illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend.
It has become clear that much of the experience and meaning of illness is emergent in character. That this should be so is hardly surprising given the strong cultural emphasis on achievement, action, and success in contemporary society and the essentially ambiguous situation this creates for those ‘failing’ through illness or other misfortune. (Bury 1988, emphasis in original)
Over the past few decades research on the sociology of chronic illness has articulated, revisited, critiqued and thus continuously enriched the notion of chronic illness as a biographical disruption, introduced by Mike Bury in the 1980s. Bury wrote that such disruptions have multiple effects, including a re-evaluation of taken-for-granted assumptions and forms of behaviour in light of bodily changes, a reassessment of one’s explanatory frameworks and the biography balanced upon these, and the mobilisation of physical, social, financial and other resources (Bury 1982). Over time, the field has moved toward developing a nuanced understanding of lives lived with illnesses that have different circumstances, conditions and consequences (Bury 1988, Carricaburu and Peirret 1995, Faircloth et al. 2004, Pound et al. 1998, Sanders et al. 2002). In this line of inquiry, researchers have explored various aspects of biography that may influence the ways that chronic illness fits into a life. Examinations of class and racial or ethnic differences in illness experience in particular have become a thriving part of this literature (Bell 2000).
With this article I seek to build on these advances by contributing to the literature that explores ‘the wider cultural and historical embedding of the narratives told by ill and disabled people’ (Hydén and Brockmeier 2008: 6). I take as my point of departure the significance of illness specifically for disadvantaged individuals attempting to generate class mobility. I use the setting of entry-level job training, which is a common experience for many socially and economically disadvantaged people, to look closely at their attempts to arrange illness into a picture of employability in an era of deeply eroded social safety nets.
Much like the medical care one might receive to treat and manage chronic illness, job training offers prescriptions for remedying a life disconnected from the formal labour force, as well as its own forms of scrutiny and surveillance. Job training programme staff teach and monitor technical skills and soft skills (like attitudes, professional culture and punctuality) and, in doing so, hope to fashion newly productive people. As an invited speaker at a graduation ceremony, one alumnus of the programme discussed in this article began by saying:
Please excuse me if I’m a little low. Actually I’m sick, but I’m still here. To the graduates, that’s a part of becoming a professional. You still have to present yourself and still do whatever things you have scheduled to do.
This speaker then went on to describe her path through the programme and the budding career that followed. Her narrative was rich with the themes that I would come to learn signalled trainee ‘employability’ to job training programme staff: hard work, personal responsibility, individual will and triumph over adversity, including illness.
In the performance of employability we see a need for coordination of action and narrative. In this article I explore two participants’ illness-related talk and experiences with a particular attention to the ways that chronic illness impacts on demonstrations of employability. The data I draw on are ethnographic and offer lengthy accounts of illness. In analysing the trainees’ narratives I use Erving Goffman’s work on the presentation of self (1959) as well as other relevant sociological work, to examine moments in which programme participants work to coordinate expressions of chronic illness and narratives related to illness. Although performance has been studied in other ways since Goffman, his concepts of signs and unmeant gestures, as well as his explication of the mechanisms of impression management, are uniquely useful in this setting as they illuminate the work that job training participants do in managing chronic illness and developing or maintaining a certain image with the goal of finding work.
Importantly for this study, Goffman also discusses the notion that the information from which people form impressions is under varying degrees of personal control. He writes that those who witness a performance divide it into two parts:
a part that is relatively easy for the individual to manipulate at will, being chiefly his verbal assertions, and a part in regard to which he seems to have little concern or control, being chiefly derived from the expressions he gives off. (1959: 7)
In both of the cases that will be discussed here, trainees’ illnesses have visible manifestations that are, for the most part, not under their control. The verbal assertions associated with presentations of illness are thus of great consequence and provide a further rationale for analysing the illness narratives of job training programme participants.
The research project
The ethnographic data presented in this article are drawn from fieldwork conducted primarily between October 2007 and October 2008 in an entry-level job training programme located in a large northeastern US city. The programme, which here is called Biotechnology Inc, prepares small groups of city residents, typically from impoverished backgrounds, for work as entry-level lab technicians in what, at the time, was a biotechnology industry that the local government was attempting to grow. Despite the economic downturn that soon followed, the study began during a moment of economic buoyancy for many in this area, especially those trainees living in or near the neighbourhood deemed blighted in which a new biotechnology park was being built. The disappearance of high-quality jobs for those with less education and fewer skills from American cities over the last several decades has been well documented (Wilson 1997). New entry-level jobs and training opportunities were thus welcome, not only because they seemingly offered a path toward stable work but also because they helped people meet the requirements for receiving government cash assistance. Under Temporary Assistance for Needy Families, the radically altered US welfare law implemented in 1996, beneficiaries must be actively working, seeking work or undergoing training in order to receive cash benefits (Office of Family Assistance 2008). A second dynamic of assistance programmes that is especially relevant to chronically ill participants is that, as welfare has become less inclusive, the number of Americans receiving cash assistance through disability programmes (primarily Social Security Disability Insurance or SSDI) has grown substantially, doubling between 1985 and 2005, in part as the result of an expansion that now includes individuals with chronic back pain and mental illness (Autor and Duggan 2006).
It is important to note that these dynamics are part of larger shifts in social policy throughout the world that have dramatically altered and reduced social safety nets over the last 30 years (Harvey 2005) and that, of late, have provoked popular outrage in cities around the globe. In the same time period, the issue of disability has become more prominent in international development conversations, though activists remain divided in their approach (Yeo 2005). Some, particularly activists in the USA and UK, have criticised the welfare orientation of disability policies and successfully advocated policies that support the right to work for disabled people (Bagenstos 2004). However, right-to-work policies intended to create an equal opportunity to employment for disabled people have largely failed to get more people with disabilities into the workforce (Russell 2002). While some scholars blame legislative weaknesses for this failure (Bagenstos 2004), many others, including those from developing countries, have argued that neoliberal policies fundamentally work against the ability of disabled groups to find employment (Hiranandani and Sonpal 2010, Russell 2002).
With these economic and policy shifts as a backdrop, I negotiated my research interests and tentative plans with programme staff and acquired ethical approval through a local university. To collect data, I observed classes several times per week, interviewed the programme’s participants and staff during the first six months of fieldwork while the programme’s coursework was taking place and spent the latter half of the year interviewing and meeting participants outside the programme. For the staff of Biotechnology Inc, active participation in the study was limited to one interview with each staff member, covering topics such as the organisation’s functioning and how trainees who were doing well or poorly were identified and handled.
For the 11 trainees of Biotechnology Inc with whom I worked closely, participation in the study was more involved. Interviewees participated in three to five formal interviews typically lasting 1 to 1.5 hours. Over the course of the interviews, I collected historical information about their employment, education, places of residence and health and asked open-ended questions about their ongoing training, work and health experiences, as well as several repeated, structured questions about their health and healthcare. Many trainees lived with different kinds of chronic conditions including depression, diabetes, epilepsy, foot problems (like heel spurs and bunions), hypertension and sleep disorders. The illness narratives referred to in this article comprise discussions that took place during the health history portion of the interviews, as well as responses to questions about ongoing health experiences and reports of recent use of healthcare.
While collecting data I observed how both technical skills and soft skills were taught, as well as how trainees who lived with chronic illnesses managed these illnesses during and outside the hours of the class. I documented all observations with field notes and interpreted my observations and interview transcripts through a process of coding (with codes derived from the research questions and emergent terms and concepts) and analytic memo writing (Charmaz 2003). Data analysis was oriented around a desire to explore how the experience of chronic illness becomes integrated into the work of job training. From a methodological perspective, the analytical approach bears much in common with dialogical/performance analysis in that it ‘interrogates how talk among speakers is interactively (dialogically) produced and performed as narrative’ and closely attends to the influence of ‘setting and social circumstances on the production and interpretation of narrative’ (Riessman 2008: 105). In this article, I consider two cases in turn, chosen because of the rich dialogical data they offer.
‘So you really do have a medical problem’
On any given night there is a good chance that someone will be sleeping during a lecture. Biotechnology Inc’s classes run from 6 pm until 10 pm most nights. As a result, the instructors seem to take trainees’ drooping eyelids in their stride. When I sit in on the class, I often notice that one trainee in particular is sleeping: Belinda1. She does not appear to fight sleep, as others in the class occasionally do, but sits with a hood pulled down over her eyes and her chin settled heavily on her chest.
At 19, Belinda is one of the younger members of the class and lives at home with her parents and young son. In our first interview, while answering questions about her daily routines, Belinda quickly discloses that she has a sleep disorder. Sleeping, particularly during class, has been a problem for her since she was in 3rd grade. After undergoing sleep studies and surgery to remove her tonsils and adenoids, Belinda was finally diagnosed with narcolepsy while in 6th grade. At first, she was prescribed Ritalin, which she says she took diligently under her parents’ watch. During 10th grade though, Belinda found that she could reduce her twice daily dose of Ritalin to one dose and still stay awake through the day. She then began taking the medication sporadically and eventually stopped entirely, stating that she prefers not to take medication ‘unless I’m in an extreme amount of pain’ and that the symptoms could be sufficiently controlled if she got enough sleep.
A few weeks into the Biotechnology Inc training programme, Belinda starts a daytime job stocking clothes at a retail chain, accepting help from her parents for the care of her son. Her new schedule makes attempts to manage her sleep disorder without medication – which she has been doing for almost two years – more difficult. When I ask how the narcolepsy impacts on her life at this point, she says:
I told Dr Burton [one of the instructors] a couple weeks ago, I’m starting to have symptoms, other symptoms, that I’ve never had before. Like it’s called cataplexy. Where your muscles get weak. I notice it in my eyelids. Like, I’ll be listening to the teacher and my eyelids will start to drop and they feel so heavy that it feels like I’m going like this to keep them up [leans head back] but my eyes are like this [mostly closed] and I can’t see anything and they think I’m asleep.
Later in the interview Belinda reveals that she has already seen a neurologist – thanks to healthcare coverage through her father’s job – who prescribed a drug to help combat the sleeping and cataplexy. At the time of the interview, though, she had not filled the prescription, citing the expense as the reason for waiting.
As the quote above suggests, Belinda is concerned about the instructors’ perceptions of her sleep in the absence of an explanation. From Belinda’s reports I learn that she graphically articulates to the staff the sludgy feeling she gets when a sleep attack comes on. She seems to do this to distinguish her condition from sleep that connotes laziness, or worse. Describing when her symptoms are bad and she is not taking medication, Belinda says:
I could be at the bus stop, nodding off. For someone who don’t know me, or don’t know anything about narcolepsy, they would probably consider me as a junkie. You know how they say junkies nod and they lean, but they never fall. I get like that.
Even in the absence of staff reactions to Belinda’s excess sleep it is clear that people did notice. On a day when I have an interview with Belinda scheduled, I spend some time looking around for her in the programme’s classrooms since we had not set an exact place to meet. When I come across a group of trainees studying together, I ask if they have seen her. Though it is 4:30 in the afternoon, one of them immediately exclaims, ‘She’s probably sleeping!’ Goffman might call Belinda’s sleeping in class, in the absence of an explanation, an unmeant gesture, in which ‘a performer may accidentally convey incapacity, impropriety, or disrespect by momentarily losing muscular control of himself’ (1957: 52). Typically, unmeant gestures are said to disclose backstage secrets to the audience; for instance, that a performer who seems to be interested or respectful, in fact, is not. In this case, Belinda’s gesture does not so much disclose a secret as suggest something that may or may not be true (that is, that she is bored in class or, more luridly, that she is using illegal drugs).
Throughout the programme’s coursework, impression management remains a major preoccupation for Belinda. In our second interview she tells me that she has begun taking the drug her doctor prescribed, which is called modafinil. Belinda recounts her first day at Biotechnology Inc after starting to take the new medication:
B: When I came to class that day and everybody noticed how I was just walking around, running around, conversating with everybody, laughing and giggling. They was, like, ‘What is up with her?’
E: So people noticed.
E: Did anybody say anything specific to you?
B: No, Jameelah just thought I was getting on her nerves. She was, like, ‘What is wrong with you? You’re getting on my nerves’. I was like, ‘I took my medicine today!’ She was like, ‘Oh, so that’s why you’re so alert and up and running around’. I was like, ‘Yeah!’ She was like [pause], ‘Are you okay?’ I was like, ‘Why do you say that?’ She said, ‘Because you’re acting like you’re [lowers voice] you’re high’. I was like, ‘No, I’m just excited’.
In this instance, Belinda’s energy does not help her merely to overcome abnormal sleepiness as she hopes. Instead, the medication places her in a reversed but closely related world of perceived pathology. Here, rather than being suspected of being one of the ‘junkies’ who ‘nod and they lean, but they never fall’, a common way of describing someone addicted to heroin, she is told by Jameelah that she seems ‘high’. Perhaps fearing that instructors will come to that conclusion too, in the same interview, Belinda tells me that she has spoken with Dr Burton about her new medication. She says:
I actually came to class one day and I told Dr Burton. I said, ‘I’m on my medication. I feel great but at the same time I feel embarrassed’. He said, ‘Why do you feel embarrassed?’ I said, ‘Because I have so much energy I do not know what to do with myself’. And I was literally walking around. I didn’t know what to do with myself!
Belinda thus provides Dr Burton with a narrative of illness that brings its medical nature into view and links energetic behaviour that might be misunderstood directly to diligent medication use. A more finely tuned version of this story soon emerges when Belinda describes an elaborate act of impression management that she has enacted at the part-time job she holds while training at Biotechnology Inc. In describing the first day she took modafinil on the job, she says:
I had to work the first day that I took it. And I was like, ‘I took my medication today, Rachel [her boss], let me know if you see anything different’. And as soon as I went to clock out, she was like, ‘I’m very impressed, Belinda. No nodding. No falling asleep. You did real good today’. She was like, ‘So you really do have a – 'coz they thought I was joking –‘you really do have a medical problem’. I was like, ‘Yeah, I have to take medication for it’. And she saw me when I took the medication because I took the medication as soon as I got to work. I got to work like around 8: 50, took it at 8: 55. I clocked in at 9 o’ clock.
The physical presence of the medication and Belinda’s ability to function effectively at work while taking the medication jointly operate as a sign, in Goffman’s sense, that Belinda has a manageable ‘medical problem’. With this narrative, Belinda carefully recasts her sleepiness as a legitimate medical issue rather than a problem of character, and as a condition that is can be addressed through the use of pharmaceuticals. However, the nature of this story as potentially crafted for use with instructors becomes more apparent when, in the same interview, Belinda recounts taking modafinil on a limited basis, suggesting that the medication is not the simple and complete solution to a complicated problem that her work anecdote indicates. She tells me:
If it’s a day, like, let’s say, a weekend. I don’t have to work, I don’t have any plans or any intentions of leaving the house, I won’t take it [the medication]. Because I know if I get tired, I can go back in my room and lay down, I don’t have to worry about anything. But if it’s a day like today, if I know I have to get up, I’ll take it.
In addition to her stated dislike of taking medication, Belinda’s irregular use of modafinil may have to do with the unpredictability of its effects. After classes have concluded, during her internship Belinda tells me that she occasionally continues to have sleep attacks, even when she has taken her medication, especially when she has not had ‘adequate sleep’. Thus, for Belinda, sleep attacks may be associated with pathology but they can also arise from the same lack of sleep that causes ordinary sleepiness. As Bury (1982: 170) writes, ‘where symptoms of a condition coincide with those widely distributed in a population ... the processes of recognition and of legitimating the illness are particularly problematic’. Belinda, however, uses the ambiguity of sleep and the strength of narrative to bring her expressions of illness into line with notions of employability. Because the meaning of her sleep has always been slippery, she is highly aware of how people perceive her and works hard to narrate her illness according to what is appropriate in the setting.
This is especially clear when we note the similarities between Belinda’s first account of reducing her intake of medication during high school and the way she describes to me her avoidance of taking medication during and after Biotechnology Inc. In both accounts she seems to limit her use of medication only to times when it will make a difference that someone else might notice. Thus, while the experience of living with the condition as Belinda narrates it to me remains somewhat static, over the course of the programme she undertakes specific narrative acts directed at the programme staff that indicate her triumphing over her condition’s challenges.
The stories I hear of Belinda’s condition unfold in time, but it is a form of time that moves events into specific narrative couplets, which pair problems and solutions. These couplets emerge through the stories she tells of interactions with programme staff and fellow trainees during our interviews: there is the problem of cataplexy, the idea that excess sleep may be perceived as laziness, the seeming high. Each short chapter of the tale Belinda tells of illness during the programme has a triumphant completeness to it, a sense of resolution. She describes the worsening of her symptoms to Dr Burton, but she reveals her illness to him at a time when she already has seen a doctor and has a prescription for medication in hand. Likewise, the fear that modafinil makes her appear high is described in proximity to her comment to me that she has explained her behaviour to Dr Burton.
These orderings suggest something of the bind in which Belinda finds herself. After a lifetime of living with an easily misunderstood illness, Belinda seems to understand that she can make her narcolepsy known only if she already has the resources for addressing it and perhaps also, if she is willing to downplay or overlook certain aspects of its occurrence. For instance, I rarely hear Belinda speculate about what brings on the attacks, nor do I develop a sense from her that complete control of the symptoms of narcolepsy is rarely possible (National Institute of Neurological Disorders and Stroke 2011). These strands would vastly complicate the directed narrative she is trying to convey. By narrating her narcolepsy as progressively more successfully controlled through medical intervention, Belinda’s potential for triumph accumulates. If she had more limited access to care or fewer narrative resources she might feel that she had to keep the illness to herself, as her illness under those circumstances would be likely to threaten her employability.
Belinda’s narrative of illness fits neatly with the trajectory that the programme staff seek for their trainees overall: overcoming adversity in order to lead a more prosperous life. The success of Belinda’s narrative work seems apparent when the programme places her in a job that closely matches her interests. Despite occasional ongoing sleep attacks, the programme staff never mention her condition to me as potentially problematic in the job placement process, though they do occasionally mention chronic illness as a barrier to others in the class. Only one time does Carol, the programme’s director, mention Belinda specifically to me in conversation. She reports excitedly that internships involving laboratory animals are becoming available, internships that might be perfect for someone like Belinda, who has stated a desire to work with animals. While other trainees wait, Belinda is quickly placed in an internship and then hired from that internship to a full-time job at the same site.
In a second case study, I explore what happens when narrative and expressions of illness cannot be made to work in concert.
On a week night a few days before Christmas, I cross downtown streets thick with rush hour traffic, making my way toward the community college building where Biotechnology Inc is housed. Approaching the building, I notice an ambulance parked outside, its back door open and lights flashing. As I wait to cross the street, I see a gurney being wheeled out with a woman sitting up on top of it. In the darkness of the winter evening, I am surprised when I realise that I recognise this woman. Jameelah is one of the older members of the class, a nursing assistant by training who is in her late thirties. I squint to get a better look and raise my hand in a tentative wave. She waves back, her hand rising high above the cars as the gurney is loaded into the ambulance. I watch Biotechnology Inc’s director, Carol, climb in behind her.
Later that night, the programme’s staff and trainees explain that the ambulance was called when Jameelah had a seizure in the class. The seizure itself, as detailed by Jameelah the next day, sounds less alarming than what I had imagined. As I interview her that morning, Jameelah is sitting at her kitchen table, smoking a cigarette and braiding her youngest daughter’s hair. The seizures are something that happen many times a year, Jameelah says, probably 10 times on average and they have been going on for almost 20 years. She was diagnosed with epilepsy when she had a seizure in the hospital during the birth of her oldest daughter. Today’s seizure, she explains, was the result of a fight she had had with that same daughter, a teenager now, over her daughter’s sometimes physically violent boyfriend. Stress brings them on, she says. She gets them when she’s upset, though she then recalls having a seizure at a New Year’s party a few years back. Were you stressed? I ask. No, she reflects. She remembers that she was happy.
In our interviews, the reasons for these seizures – a swirling series of rationales for what brings them on and sustains them – surface frequently. Family stress is her explanatory first line, but when this stress seems under control, other possible explanations are invoked. After Jameelah’s next seizure at the school, a few weeks later, she points to a fast food meal she ate during class, an effort to get food in her stomach so she could take her medication. She says that she’s heard people on the bus talking about how the McDonald’s near the school uses dirty grease. Or perhaps it’s that she needs a haircut, since when her hair grows out beyond a couple of inches, she begins to feel tension across her scalp. Or maybe it’s just exhaustion.
Medication comes up relatively infrequently in these explanations. Dilantin, a drug developed in the 1930s that is still widely used as a preventive measure against epileptic seizures (Bromfield et al. 2006), is the drug that Jameelah has used longest. For years she has been given prescriptions that indicate she should take it once or twice daily. Without access to health insurance through a job3, Jameelah must take her prescriptions to free clinics and hope for the best. She says that she usually has some Dilantin on hand and tries to take it regularly, but alludes to rationing it; taking more when she feels stressed and less when she feels fine.
Jameelah’s on-again-off-again use of Dilantin and its slim role in her notions of how she might better manage her condition may be related to what she perceives as its lack of reliability in controlling her symptoms. She notes that there are times when she’s taken the medication and it doesn’t ‘register’. She explains this to me when I ask her about whether she had been administered an increased dose of Dilantin at the hospital the night I watched her being loaded into the ambulance. She says:
Yes. I had to, because, granted, I’m taking my medicine. It could be, you know, where it’s not registering at all. Where here – that’s one of the problems that I’ve been having since I’ve been having seizures. How is this medicine not registering when I’m taking it like I’m supposed to?
Though Jameelah once may have struggled with these questions on her own or with family members, her condition is now a topic that concerns the Biotechnology Inc staff as well. Jameelah makes no secret of her view that the post-seizure emergency room visits she is often cajoled into by the Biotechnology Inc staff do little to improve her health. Early in our interviews she describes resisting the suggestions by programme staff that she go:
That’s why I, you know, couple times I done had [seizures] at school and I told [the programme staff], ‘No, I can’t go, because, here, I got enough bills for the hospital right now.
On the night the ambulance came, Jameelah had obviously complied, and the programme’s director, Carol, accompanied her. At the hospital, Jameelah explains to Carol that the seizure was the result of worrying about her daughter. As Jameelah says, Carol responds with the following advice:
Talking to the doctor last night and with the advice [Carol] gave me, [she said]: ‘It’s time for you to stop worrying. You know them other two kids going to be okay’. I’m, like, ‘Yes, I know that for a fact’. ‘You know your brother’s OK’. I say, ‘Yes I know’. ‘You’re trying to succeed in a career. Put the pain in the trashcan right here. Leave it at the hospital until we finish’. So I took a piece of paper, balled it up and threw it in the trashcan.
This advice moves the solution to managing Jameelah’s condition at least partially out of the realm of the medical into that of the social. Family is significant in Jameelah’s life and perhaps it’s for this reason that this image of a paper symbolising familial pain and worry being placed in the trash stays with her. She adopts it as a kind of a mantra. Later, she recounts for me a conversation she had with her brother, who is permanently disabled and for whom she serves as primary caregiver. In this interaction, Jameelah tells him that she is thinking of dropping out in order to have more time to attend to the various needs of her family members, including him. She reports that he encourages her to stay in the programme and counsels her with this same image: ‘Take their paper, throw it in the trash, say “trouble’s gone” ’.
Though Jameelah’s family members’ demands occasionally complicate her participation in the class, they also provide the reason for continuing to strive. After describing an intense stretch of studying for a test, she says:
I want the paper [the graduation certificate]. No one can be perfect, but this is something personal to me that I’m trying to pull out. I just want to see my mother and father’s face [when I graduate].
Jameelah’s conviction is almost palpable and she keeps the slips of paper bearing each week’s grades in a box on her bedside table. Jameelah sketches out a narrative of employment and success in which dedication to the class and to her family are interlaced, and recasts her financial desires with a potent sense that individual will can triumph over trouble. She says:
With biotech I’m learning something completely different. Who knows, I might be the one to find out about cancer, what could be how to prevent it, how to control it, what does it effect, or find out about other diseases and everything. Because a lot of people they holler, ‘Yeah, that’s good money’. I’m not worrying about the money . . . Granted I want to build my house. I want my little girl to grow up, ain’t got to grow up running around worrying about somebody shooting outside or police running around.
Jameelah’s narrative of enthusiasm about employment and of dedication to personal goals linked to employment may aim to persuade the programme staff that she has the will to overcome whatever complications they see her illness as presenting. However, Jameelah’s illness is too visible and too unpredictable to disappear behind a performance of dedication. Near the end of the programme’s coursework, when I ask about where different trainees are headed for internships, Carol tells me with some exasperation that she worries that Jameelah is not taking her medication as prescribed, shifting the programmatic solution to addressing Jameelah’s epilepsy back to the world of the medical and the measurable.
Jameelah seems to understand that performance in the medical arena is required as part of her presentation of illness to programme staff. At one point, Jameelah mentions a follow-up hospital visit after a trip to the emergency room, which surprises me, due to the additional costs incurred. We have the following exchange:
E: So, the visit was to follow up after the seizure.
J: Yeah, just, you know, to let Carol and them know, you know, what the doctors have said. Levels and everything was okay.
Jameelah does not characterise the follow-up visit as telling her something about her health or improving it. Instead, the visit operates as a sign that she has followed advice from the programme staff about seeking care for her condition. However, for Jameelah, keeping up her end of this relationship is expensive, and later in the class, she attempts to control the visibility of the seizures so that she will not be made to go to the hospital. She tells me that she has had some small seizures since our last interview two months before, but that none of them were at school. She says, ‘If I start feeling strange or feeling funny, I would, you know, call [the programme staff], let them know, “Hey, this is what’s going on. I’m not coming in” ’.
The programme staff seem aware of how financial constraints limit Jameelah’s ability to seek care as they would like her to. While Jameelah completes the internship at the end of the programme, the staff arrange a meeting for her with the state’s disability agency, which helps her to qualify for medical assistance in the final days of her internship. Jameelah clearly appreciates Carol’s attention and effort but seems ambivalent about this expanded access to care. She cannot say when she will receive the card in the mail that will allow her to access services, nor can she say whether and how long the coverage will continue if she begins to work full time again following the internship.
In time, the class and internship end and Jameelah’s contact with the programme staff diminishes. One of the last times I speak with Carol, she tells me that Jameelah has taken a nursing job. She acknowledges that this is not the job in biotechnology that the programme advertises, but she feels that the programme’s assistance in securing state-sponsored medical insurance for Jameelah was instrumental in her employment and thus that the programme can ‘take credit’ for the job. I talk to Jameelah and she is indeed pleased to be working. However, her job is as a certified nursing assistant, a qualification she first earned over a decade before. She is employed by a company that she worked for previously and she is paid $11 per hour, almost exactly what she made prior to participating in Biotechnology Inc.
Belinda and Jameelah’s conditions are distinct4, but the visibility of their illnesses means that they require action and explanation. Such visible chronic conditions provide a unique opportunity for looking closely at how illness is managed in the pursuit of class mobility. Both women must pair unmeant gestures related to their conditions – like seizures or the appearance of not taking medication – with narrative and action to fashion signs of employability.
While Belinda is successful in this project, what seems to hinder Jameelah is that her desire for a job trumps her desire to find a cure for her condition. When it comes to the work of the programme, she is self-propelling, forward-looking and optimistic. In the realm of her illness though, all is more tentative. The way she describes her epilepsy has a ‘subjunctive’ quality to it (Bruner 1986: 26, Good and Del Vecchio Good 1994) in that multiple possible explanations of illness are juxtaposed at different points in time. Jameelah imparts a sense that she has lived with her condition for so long that the seizures constitute a problem only when they generate bills she cannot pay or threaten her ability to continue in the programme. Her narrative conveys none of the neat completeness that Belinda’s stories do.
In this way, Jameelah’s approach to her illness bears a resemblance to Robert Desjarlais’s (1997) concept of struggling along. In his ethnography of a homeless shelter in Boston, Desjarlais describes struggling along as an alternative to a cumulative notion of experience. Experience ‘entails an aesthetics of integration, coherence, renewal, and transcendent meaning – of tying things together through time’ (1997: 22). Instead, for his homeless participants, struggling along involved moving forward ‘with great difficulty while trying at times to do away with or avoid the constraints or hazards strewn in one’s path’ (1997: 19). Jameelah travels the paths toward employment and health in different ways: a rushing step toward a job versus a somewhat aimless amble down the path of illness. Though Jameelah never indicates that this aimlessness is in any way calculated, it is worth noting that without resolution her symptoms form a kind of safety net in the event that she is not able to find work, potentially making her eligible for cash assistance and medical insurance through the SSDI programme.
In contrast, the programme staff desperately desire a cure for Jameelah’s seizures. A cure, or at least a reduction in the frequency of the seizures, seems to be a prerequisite for the development of a successful presentation of employability. As recounted by Jameelah and through their informal conversations with me5, the staff propose two approaches to reducing the seizures: medical intervention and a reduction in Jameelah’s engagement in her family’s emotional life. I will discuss each of these in turn.
By persistently encouraging her to seek medical care, the staff tacitly ask Jameelah to alter a clinical relationship to illness she has developed over decades, in light of her particular experience of epilepsy, as well as an enduring lack of material resources. It is worth noting that at no point does Jameelah herself seem especially distressed by her condition. She does her best to fall into step with the programme’s urgency around her illness and occasionally musters energy to work towards an elusive medical intervention. In doing so, she goes through some of the motions that the programme suggests and sometimes seems to believe they will work. At other times she directly acknowledges the futility of these actions, based on extensive past experience.
While the staff leave Belinda to manage her own care, they come to treat Jameelah, over the course of the programme, as someone in a ‘handicapped role’, in which she is compelled ‘to concentrate on getting expert therapy, to follow instructions, [and] to get well’ (Fine and Asch 1988: 12). In order to facilitate this, the staff link her with the state disability agency, a move that they believe offers expanded potential for addressing her symptoms. To access these services, however, Jameelah’s illness must be labelled as a disability, which puts multiple possibilities in motion. If the staff are unable to place Jameelah in a job or unwilling to do so because it might risk their relationships with employers, such a label may be called upon to justify this outcome. At the same time, the label offers Jameelah access to care and additionally, if taken to its full conclusion, an exemption from having to prove constantly her fitness for work. Accepting this label would place Jameelah squarely in what Deborah Stone has called ‘the needs-based system’ of disability benefits (Stone 1984). However, given that Jameelah does not see herself as needy and deeply desires employment through Biotechnology Inc, this move also reveals the ways in which Jameelah’s experiences dovetail with the long history of discrimination against people with disabilities that would deny her certain social roles even while helping to provide for her (Baynton and Douglas 2001).
A second avenue toward reducing seizures that the staff propose is the diminution of Jameelah’s involvement in her family’s emotional life. While the staff are supportive of Jameelah, they ultimately ask her to disrupt a social life in which family structures of mutual support are already carefully and sometimes precariously balanced. They tell her to ‘Put the pain [of her family relationships] in the trash can’. In the programme’s view, this is a strategy that need only be used ‘until we finish’, while for Jameelah, family signifies an uninterrupted life-long commitment. Jameelah’s reformulation of this advice in her brother’s words (‘Take their paper, throw it in the trash, say “trouble’s gone” ’) suggests an underlying understanding that the pain, of course, cannot simply be thrown away. Their ‘paper’ however, can. As a performative act, Jameelah can attempt to say ‘trouble’s gone’.
As the ethnographic accounts should make clear, Jameelah and Belinda play very different roles in their families. While Jameelah positions herself as matriarch and lead caregiver of an extended family, Belinda is younger and still benefits from the occasional instrumental support of her parents. Bury draws a distinction between ‘coping’ with illness and ‘strategy’ related to illness. In his view, coping refers to ‘how people maintain some sense of worth in the face of intrusive symptoms’, while strategy refers to ‘the mobilisation of resources in the wider social environment’ (2001: 273). For Belinda, developing a strategy related to her illness is comparatively easy, given the many resources her parents are able to provide when called upon. Through her father’s job, Belinda has better access to healthcare than many trainees and because she lives at home her parents offer an easily accessible childcare safety net. Jameelah’s family members rarely provide these kinds of instrumental resources. However, she copes with her illness, in large part, because of the role she sees for herself as caretaker for her brother and children, the pride she feels in providing a home for them and the better future she hopes to forge for them through work. The disability designation offered by programme staff, on the other hand, is a strategy in Bury’s sense, but one that Jameelah may be hesitant to take up as it interferes with this role and vision.
The cases of Belinda and Jameelah make clear the preference on the part of job training programmes for participants who can fashion triumphant narratives from those of adversity. Trainees with chronic illnesses are thus expected both to learn the skills of the trade and to work towards producing the healthiest possible versions of themselves for later evaluation by imagined employers. In Belinda’s case, the pace and urgency of these projects seem to match and job placement results. Jameelah’s path through the programme shows us what happens when trainees’ efforts to address illness differ from what the programme staff desire.
Job training programmes like Biotechnology Inc advertise that they give trainees skills to earn upwardly mobile jobs but through the process of training, they also indicate how illness must be moulded in the crafting of an employable self. For trainees who are chronically ill, striving for the kinds of triumphant narratives that are desired by job training programmes demands certain presentations of self, as well as certain presentations of illness. The stories I recount here of Belinda’s narcolepsy and Jameelah’s epilepsy – conditions that have similarities, yet are woven through two very different experiences of training – raise the question of where illness fits into structural interventions like entry-level job training programmes, which seek to imbue poor populations with the skills and dispositions of the middle class. That these programmes operate against the backdrop of needs-based benefits for which poor and potentially disabled individuals may be eligible (for example, SSDI) and rights-based policies that have had little effect, further complicates the multiple but still constrained ways in which trainees might navigate.
Returning to the bedrock of sociological research on chronic illness, it may be worth thinking about where the notion of chronic illness as a biographical disruption fits into these stories. In preferring stories of action like Belinda’s and considering subjunctive tales of illness like Jameelah’s as problematic, programme staff seem to want trainees to treat their illnesses as if they were sudden biographical disruptions. In the programme’s view, from illness episodes there issues forth a need for repair work, an active figuring out of how illness can be made to fit with a professional life. Practically, this means that programme staff expect to see an immediate mobilisation of resources (Bury 1982) by trainees to help them confront the circumstances of illness.
However, most chronic illness predates job training and thus, if a process of biographical disruption and repair were to occur, they already would have been initiated. For trainees like Belinda and Jameelah, who have lived for long periods with their illnesses and with various forms of material deprivation, perhaps illness is seen as part of the ‘normal chaos of everyday life’ (Williams 2000: 51).
If job training programmes are indeed invested in viewing even long-existing chronic illnesses as a kind of disruption, we might consider what it means in the context of participants’ lives for programme staff to make a problem of conditions that are not perceived as such by participants themselves. Staff may believe that to do well in the programme performance is required only in the realm of that which they conceptualise as directly relating to employment (for example, punctuality, demeanor and technical skills); however, Belinda and Jameelah’s stories indicate the strength with which performances of health and illness also come into play in trainee experiences of job training. Successful performances of employability require chronically ill trainees to present their illnesses as well managed and, ultimately, resolved. However, these are merely presentations. Without the trainee viewing the condition as problematic and (as in Jameelah’s case) without continuous access to healthcare and other resources, such presentations are unlikely to have beneficial clinical or financial outcomes. A more deeply felt disruptive force in lives like Belinda’s and Jameelah’s is perhaps that of the many rearrangements necessitated or encouraged by participation in job training programmes. Such programmes, along with the systems that govern disability benefits, invite those who are disadvantaged into complex and new, but not necessarily improved, medical and economic arrangements.
All names used in this article are pseudonyms.
The title for this section is borrowed from Robert Desjarlais’s Shelter Blues: Sanity and Selfhood Among the Homeless, the reasons for which are explored later in the article.
Jameelah worked regularly as a nursing assistant for almost 10 years before enrolling in Biotechnology Inc. Though health insurance was typically available through these jobs, she rarely made enough money to be able to afford the employee contribution and thus had gone without health insurance for most of her adult life.
Regarding the -epsy suffix of both disorders presented here, while these are somewhat dramatic examples that are especially visible to an observer and to staff, one can easily imagine a trainee living with a diagnosis of depression or anxiety working hard to narrate illness in a way that appears consistent with employment.
One limitation of the data collected for this study is that staff perceptions of trainee illness remain largely opaque. Conversations between programme staff and trainees about trainee conduct typically took place before and after class behind closed doors. Thus, it was rare that I was able to capture reactions of staff to trainees’ narrations, presentations and experiences of illness. An analysis of these dialogues would be a fruitful direction in which future research on social mobility, identity and illness might move.
The Hopkins Sommer Scholars Program provided financial support during the collection of this data and the drafting of the manuscript. I would also like to thank Abigail Arons, Abigail Baim-Lance, Brian Glick, Lori Leonard and Catherine Kohler Riessman, as well as the journal’s editors and anonymous reviewers for their thoughtful comments on earlier drafts of this article. Finally, my deepest thanks go to the trainees and staff members of the job training programmes that were part of this project, especially the one featured here.