Agency has become one of those central terms to understand both everyday practice with disability and chronic diseases, and modern healthcare in the western world. Today we see a willingness for more patient-centred care at hospitals and new technologies that give possibilities of self-care. This has become a prevailing discourse that stresses individual responsibility and autonomy, but also more participation and better accessibility for care. It is a discourse that has become a central part of the biomedical concept of patient agency. But is it possible to continue on this biomedical track of patient agency? In Living Chronic: Agency and Expertise in the Rhetoric of Diabetes, Lora Arduser goes into depth to critically review this concept and at the same time present a reconsideration of agency when living with disability and chronic diseases. Her case is the chronic disease diabetes, which is an appropriate case for studying agency. The diagnosis places great responsibility on the person to take responsibility for using insulin to manage blood sugar and monitoring different values in an everyday practice. The individual becomes a worker in Arduser’s vocabulary – not a patient or a consumer – because ‘[p]eople with diabetes do a lot’ (19).
Arduser’s argument is that there are at least four important themes in reconsidering patient agency and coming up with a new language and practice for the definition of this concept. First of all is the rising number of people living with chronic illnesses which require more care. Although Arduser focuses on diabetes, her argument could be wider. It is not only that more people are living with chronic illnesses. The medical technologies are getting better and more people can survive today, but are left with different illnesses and disabilities that require lifelong care. In relation to this are also the rising costs for healthcare and the need to find new ways of organizing healthcare and rehabilitation. In other words, how healthcare can put more responsibility on the individual and at the same time make healthcare more effective. A second, parallel development is the societal change from compliance with doctors’ orders, to encourage different forms of patient-centred care. This changes focus onto empowering patients and shared decision-making, where the patient is expected to take care of themselves. Third, in line with this change, lies also the growing need for communicating about one´s health and not only passively listening to the doctor, something that Arduser relates to the importance of collaborative care. Fourth, the final theme is the growing need – and possibilities – for sharing and producing knowledge. This societal change is closely connected to the growing digital technologies in society and the possibilities this brings. In diabetes care there has been almost a revolution of new technologies that produce, store and communicate knowledge in the form of numbers.
Arduser begins her study with a discussion of the current landscape of how agency and expertise is discussed. Central for this discussion are the concept of control over the diabetes and the treatment in relation to numbers – a form of medical surveillance. Diabetes is a good example for how numbers get a value, and can be compared to other parts of modern medicine where different kind of numbers are steadily growing. But it is also a self-monitoring practice. As such, this technological progress is closely related to identity and how a person can progress from uncontrolled and non-compliant to an expert identity. At the same time, it is this practice that becomes complicated, and Arduser focuses on the visit to the doctor. The numbers cannot easily be transferred from one person to the next, but need the work of the person to be processed as information and symbols. Liminal spaces are here suggested as a possible spatiality that can question those social orders that are taken for granted and instead encourage new definitions of what patient agency can be. These are also spaces where people can enact agency in betweenity, something that is not always available in more rigid and traditional spaces.
It is very productive to think in lines of liminal spaces, especially if one wants to rethink the so-called competence gap between the expert and the non-expert. In a growing world of evidence-based medicine it is easy to envision that knowledge is something that easily can be shared. But Arduser makes it clear that it should not be seen as a gap at all. Instead she writes very clearly: ‘In making meaning, people with diabetes do more than just rely on epistemic knowledge that is transferred unfiltered by medical specialists’ (86). She thereby clarifies how agency instead shall be enacted in liminality spaces. For example, interpretation and action are central to understand how people experiment and hack their bodies and the technologies they use to find a bodily knowledge that works for them. It is not only a form of self-care, but it also empowers. It becomes a form of subject expertise, where the person enacts several subject positions. Arduser talks about fluid subjectivities.
Location agency in disability and chronic diseases requires new approaches, something that Lora Arduser does very well here with the example of diabetes. It is a discussion that aligns with that of autonomy, a discussion that is also to be found in disability studies. Living Chronic opens up new arguments and possibilities to understand agency in relation to disability and chronic diseases, but it requires specific studies in relation to other contexts. The book is a good start ‘in order to move from a system that values compliance to one that values patients as partners’ (166). Let us start there.
Lund University, Lund, Sweden
[email protected]