The social model of disability and framing disease III – Framing disease
Author: Berend Mul
This is the third post in a three-part series.
The previous post of this blog series listed some of the points of critique that have been formulated by various scholars on the social model of disability. This account was by no means exhaustive, but it does serve to illustrate that in a changed intellectual context new limits of the social model have surfaced. The post concluded with a brief explanation of one alternative to the social model – the critical realist perspective or interactional model on disability proposed by Tom Shakespeare. In my view, this ‘critical realist’ or interactional approach to the theoretical issue of disability (and impairment) is quite reminiscent of a concept developed by the acclaimed American historian of medicine Charles Rosenberg: ‘framing disease’, and closely related to that, ‘disease as frame’.
Disease, Rosenberg starts out with in his 1989 article, is an elusive and complex entity. It is, quoting his words at length: ‘at once a biological event, a generation-specific repertoire of verbal constructs reflecting medicine’s intellectual and institutional history, an aspect of and potential legitimation for public policy, a potentially defining element of social role, a section for cultural, and a structuring element in doctor/patient interactions’. In one way, obviously, disease is biological, i.e. pathological process that is little influenced by its socio-cultural context. Yet as the quote above makes clear, it is also a social phenomenon, and as a social phenomenon disease must be agreed upon and named through social process (Rosenberg 1989, pp. 1-2).
Rosenberg was not the first to recognise that disease is partly a socio-cultural phenomenon. In fact, his writing was not primarily a response to any medical model of disease, but instead was aimed at the social-constructionist approach of disease. According to Rosenberg, social-constructionist work had brought many valuable insights, but it also typically assumed a style of cultural criticism that had gone out of fashion in historiography. The social-constructionist approach overemphasised the extend of arbitrariness and the functionalist aims in the social processes of naming and agreeing on diseases. Whilst the social-constructionists are certainly right on the fact that disease is a social phenomenon and a social actor, it should be acknowledged that the social role of disease is limited by its biological character. According to Rosenberg, historians had not focussed enough on the connection between biological events, their perceptions by patients and practitioners, and collective efforts to make sense of these type of perceptions cognitively and in terms of policy. In addition to this. Finally, to say that disease is socially constructed is very close to tautology: all aspect of a person’s social identity – of which disease is part – is socially constructed (Rosenberg 1989, pp. 2-3, Rosenberg and Golden 1992, pp. xv-xvi).
The relationship between the medical profession and the state is an important topic in the social history of medicine. Quarantine Scarlet Fever. Ca. 1910. Credit: U.S. National Library of Medicine. https://www.nlm.nih.gov/exhibition/visualculture/introduction04.html
For these reasons, Rosenberg proposes to replace the concept of ‘construct’ with ‘frame’. Diseases are ‘socially framed’ in the process of the intellectual definition and diagnosis of disease, and the social and cultural meaning that are attached to diseases by physicians, patients and, for example, policy makers. How people make sense of disease depends on the intellectual repertoire available at the respective time and place. The biological characteristics of a disease too, shape, influence and put limits upon this social process of negotiating disease. Different diseases present different pictures to frame (Rosenberg 1989, Rosenberg and Golden 1992 p. xv). Once framed i.e. defined and understood as specific entities, diseases also offer a frame. They assume a role as social actors, becoming a factor in structuring social situations. This role as social actor is obvious when it comes to morally charged diagnoses in the past such as alcoholism, homosexuality, and AIDS (Rosenberg was writing in the 1980s), but heart disease too becomes part of an individual’s social identity (p. xviii).
Rosenberg’s proposal to study the way in which diseases were ‘framed’ in the past – as opposed to socially constructed – and how diseases operated as social actors throughout history, in important ways anticipates Shakespeare’s idea for an interactional model of disability. Both authors understand disease, respectively disability as complex social and biological phenomena and stress the importance of the interplay (or interaction) between these different ‘levels’ or aspects. I would not go so far as to categorise Rosenberg’s ideas as a critical realist approach to disease. This would require a more in-depth philosophical inquiry, which is not the purpose here nor is it within the scope of this website. This blog series should be seen as an attempt to bring both approaches from these different disciplines into one view, rather than as a systematic comparison.
Generalizing, it is probably fair to say that historiography as an academic discipline is not particularly known for the extensive philosophical pondering. In that regard, the theoretical work on this philosophical underpinning of their field by Shakespeare, Williams and others in disability studies could serve as an inspiration for historians of medicine. Conversely, Rosenberg’s framing-approach found quick support and adaptation in research (see the chapters by different authors in Rosenberg and Golden 1992, for positive reception see e.g. London 1993), although, of course, that is not to say that Framing Disease did not receive any critical reviews (e.g. Conrad 1993).
Shakespeare’s Disability Rights and Wrongs was met with a mixed reception and at least one prominent scholar in the field of disability studies, Mike Oliver, wrote a scathing review on the book (Sheldon et al. 2007). The book’s reception is mirrored by Shakespeare’s controversial reputation. In contrast, Charles Rosenberg is considered an eminent historian within his discipline, and his work has been seminal to the history of medicine for decades (Linker 2013, pp. 513-14). After Rosenberg’s 1989 article, Framing Disease was published in 1992 containing fourteen chapters by different authors. Of course, while the question what disability is goes directly to the heart of disability studies as a field of research, the relationship between disease and the broad discipline of medical history is not quite so close. Yet, although a direct comparison between both scholars is moot (if only because of their generational difference), the immediate reception of their work is still noteworthy.
Perhaps the different reactions in disability studies and the history of medicine to, respectively, the interactional model and the framing disease-approach might at least in part be explained by the different intellectual histories and academic identities of both disciplines.
While the past has played a role in Western medicine in some shape virtually since its foundation in ancient Greece and Rome, the history of medicine as an independent academic discipline emerged in the first half of the twentieth century. From its inception, the discipline was closely aligned with medicine. The first generation of professional medical historians, of whom Erwin Temkin and Erwin Ackerknecht (Rosenberg’s mentor) – both already came to consider diseases as culturally constructed entities! – had a background as physicians, and in the United States they were typically employed in medical faculties and institutions. They both approached the history of disease a crucial scientific part of medical education, on par with subjects like pathology and anatomy (Linker 2013, pp. 506-16). Indeed, their educational task lay primarily in teaching medical students – a task that is still a core component of the field (Jones et al. 2014). Although these historians’ understanding of disease went against the grain, from the start the discipline was closely aligned with the medical profession. In the decades after the Second World War successive generations of non-physician historians entered the field. But by and large, even these new social historians of medicine generally tried to balance social critique with academic objectivity, distancing themselves from a too overtly political or activist approach (Kudlick 2013 p. 542).
All this stands in marked contrast with the emergence of disability studies, which, as post I described, in the United States and Britain originated from disability activism – in the words of Catherine Kudlick, as a ‘blatant, unapologetic celebration of the relationship among politics, advocacy and history’ (p. 543). The social model of disability itself drew heavily from ideas developed within the UPIAS and in the U.S. the minority model was inspired by race and gender studies. As was noted, disability scholars typically hold a critical if not sometimes adversarial view of modern medicine and the medical profession. For obvious reasons, with exceptions medical history as an academic discipline maintains a different relation with medicine and the medical profession.
It therefore remains to be seen if the distance between disability studies and the history of medicine can be closed (see: Linker 2013; Kudlick 2013 makes the same point from her perspective as a disability scholar). Perhaps, though, the similarities between Shakespeare’s and Rosenberg’s theoretical work may offer an additional point of reference.
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 In fact, this typically indifferent or aversive stance in relation to philosophy and theory of history in favour of a stronger adherence to empiricism in historiography is often even a conscious position (Daddow 2005a&b). In his introduction to Framing Disease Rosenberg himself does not associate his framing disease-approach to critical realism.