Medical and vocational rehabilitation concerns human beings undergoing critical transitions . These transitions include the dramatic changes from living an everyday life to experiencing a sudden, disabling accident or illness, and subsequent efforts, underpinned by health and social services, to restore health and independent living. Under these circumstances, the persons are also likely to experience critical status transitions, changing type of occupation, financial situation, or family situation. More concretely, persons undergoing rehabilitation encounter transitions , as they are sent from specialized health services to general health services, as well as between different branches of the public sector (e.g. from the healthcare sector to the work and welfare sector), although these processes seldom occur in a linear fashion.
According to the British philosopher Roy Bhaskar, ‘in periods of transitions or crisis, generative structures, previously opaque, become more visible’ (Bhaskar, quoted in Danermark et al. 2002, p. 104). Hence, by studying the transitions undertaken by rehabilitation patients (life transitions , status transitions , and the mundane transfers across agencies and sectors), one may learn a lot about individuals’ and families’ abilities to respond to the cumulative crises (loss of health, loss of identity, loss of job, loss of income, etc.), about society’s apparatus to support the individuals and families in these efforts, and more generally about the inclusive and excluding mechanisms operating in organizations, in health systems, and in labour markets.
Prompted by this rationale, this book aims to bring the study of transitions within rehabilitation into the wider context of the welfare state’s changing role. The notion of universalism is central to discussions of medical and vocational rehabilitation services and how they have evolved along the course of the welfare state’s development. To introduce this book, this chapter considers the notion of universalism , including the debates it has engendered, and relates it to the provision of medical and vocational rehabilitation services in Northern European welfare states. To set the stage for case studies on rehabilitation for survivors of traumatic brain injury (TBI), which is the topic of five contributions in this volume, this chapter discusses the composition and developments of TBI patient groups. It considers persons with TBI to be characterized by not only physical/neurological but also biographical and social disruptions. It further discusses the potential for extrapolating TBI research findings to other areas of rehabilitation and healthcare. This excursus is followed by a summary of the book’s chapters and a general conclusion.
1.1 Rehabilitation Services in the Universal Welfare State
In his deeply touching postscript to his very last book on social policy (published posthumously in 1974), Richard M. Titmuss describes his stay at the then Westminster Hospital, where he was being treated for terminal cancer. With great enthusiasm, he describes the other patient who shares his room, Bill, a war veteran of working-class background. For several decades, Titmuss learns, Bill has received top-quality rehabilitation since sustaining injuries during World War II. The two men even attempt to calculate the total value of health services he has received throughout his life.
For Titmuss, public health services, as the ones provided for him and Bill, are the prime example of universalism, as a domain where citizens of all social classes meet one another and enjoy equal standards. He also notices that, for most middle-class persons, health services are the welfare state’s prime interface, allowing them to appreciate what their taxes fund. Hence, universalism is the constituent factor of community (Bauman 1998). Accommodating everybody across social class, who are characterised by a given need, universal services are less stigmatizing than targeted measures. For Titmuss, universal welfare state institutions serve to alleviate the ‘social costs’ of modern society, that is, the externalities generated by the capitalist market, from air pollution to workplace accidents (Titmuss 1974, p. 72). The welfare state was supposed to support the victims ‘who in time of product and process innovation become the price of economic growth’, as Reisman summarizes it (Reisman 2001 [1977], p. 159).
In essence, rehabilitation services are delivered for the purpose of restoring and reconstructing individuals’ capacities, invoking notions of normalizing and standardizing, but also—as increasingly acknowledged—for adopting changes in affected individuals’ social context for their own mechanisms to function again (cf. Brante 2011, p. 17). Indeed, rehabilitation services across medicine and social services became a cornerstone of the post-war, universal welfare state in Northern Europe.
Peaking around 1960, universalism was soon attacked from quite different political positions. First, criticism was raised against one material manifestation of universalism : the set of ‘people-changing’ organizations, where citizens were to be treated and normalized (Hasenfeld 1972). Liberalists saw the organizations, such as mental hospitals, residential drug abuse clinics, and rehabilitation institutions, as representing a statist, costly, and outmoded ‘one-size-fits-all’ way of thinking. The progressive left, inspired by sociological research (such as Goffman’s (1961) fieldwork in asylums) and even popular culture (such as Forman’s (1975) One Flew Over the Cuckoo’s Nest), saw them as overtly oppressive (Kaukonen and Stenius 2005).
Universalism has faced new pressure in recent decades, broadly related to societal transformations since the mid-1970s, with the service economy becoming increasingly dominant and the growing internationalization and interdependence of national economies (termed ‘globalization’ from around the 1990s). These deep-seated developments displaced and obscured processes of externalization, making it increasingly difficult to grasp the relation between those who produced and those who bore Titmuss’ ‘social costs’. In effect, people on the receiving end of this chain of externalities were increasingly blamed for their own misery and considered less deserving of benefits and services (Harsløf and Ulmestig 2013).
Under conditions of austerity, the liberalist argument against universalism —that targeted benefits and services are more cost-efficient—has gained momentum. As the apt title of a book discussing the increasing emphasis on targeting and ‘tailoring’ of services sums it up: ‘Now it’s personal’ (Ben-Galim and Sachradja 2010). The European Union, with its recent initiatives in the social domain, including the Platform against poverty and the Social Investment Package, strongly advices member states to better target the provision of cash benefits and social services, in order to increase efficiency and effectiveness (Gómez-Barroso et al. 2017).
Meanwhile, the progressive left is increasingly concerned with ethnocentric and excluding features of universalism, a critical position that has gained a stronghold in recent welfare state research and disability studies (Anttonen et al. 2012). The new progressive left’s position tends to downplay that rehabilitation services are part of a universal safety net, stretched beneath all citizens. Instead, subscribing to Foucault’s (2003, p. 15) notion that ‘politics is war by other means’ (inverting Clausewitz’s classic dictum), they consider the welfare state’s repertoire of ‘active’ measures, including rehabilitation programmes, as ‘governance technologies’ to instil a new subjectivity concomitant with the prevailing social order. Accordingly, this position advocates redesigning rehabilitation systems to accommodate diversity across groups that differ in levels of functioning, and a host of gender and social identities. In these efforts, among both academics and social activists, such as the disability movement, language has been a major site of struggle. Their criticism of terms such as ‘patient’ or ‘victim’ illustrates the linguistic turn in the field of rehabilitation: in this context, ‘patient’ is considered pejorative, given its etymological association with passive suffering (McPherson et al. 2015, p. vii), while ‘victim’ is allegedly inappropriate (and should be replaced with ‘survivor’) as also this term, it is argued, misconstrues the person’s level of agency. The criticism of peoples’ choice of words is often indifferent to their intentions or the context in which they apply them.
Whilst the case made for replacing a word with another is often convincing in itself, this obsession with language, and eagerness to correct and sanction those who cling to outmoded terminology, may challenge the tenets of universalism, by depriving ordinary people a ‘valid’ language to take part in discussions on disability and rehabilitation. Having an updated vocabulary for engaging in discourses on disability and rehabilitation becomes, in a Bourdieusian sense, a critical part of one’s cultural capital.1
As Chap. 2 will detail, rehabilitation services have had to a...