With few exceptions, brain injury has been vastly understudied from a social model perspective. There are even fewer studies of the specific effects of brain injury on women. Living with Brain Injury is therefore a welcome addition to disability studies.
Stewart is a community psychologist interested in the interactions between individuals and the broader sociocultural context in which they live. His aim is to use narrative analysis as a tool for exploring the biographies and social experiences of 10 women with brain injuries. Brain injury involves a significant change in social position – it is fundamentally a social experience, according to Stewart.
One of the main focuses of the book is on the identity issues raised by brain injury. Like almost all people with brain injuries, these women report a new sense of self and a new sense of social disconnection. The sense of loss (of a former self) that these individuals experience is reinforced by the reactions of others – particularly through negative perceptions of brain-injured people. The difficulty of dealing with impaired perceptions of oneself – which is an effect of many brain injuries – means that people struggle to find out what is a ‘real’ deficit resulting from the injury. Differing opinions and prognoses among professionals, caregivers and confusion within oneself can make this process particularly challenging.
Learning how to live with a brain injury necessarily involves dealing with the differences that are experienced before and after the injury. Stewart suggests that a central challenge is to deal with this ‘division from oneself’ (83). This is particularly difficult because the former self is a source of strength (it provides a foundation of relationships, experiences and ways of knowing oneself) but it is also a sense of profound loss.
This loss of the former self is particularly evident in rehabilitation. But the process of rehabilitation also creates and reinforces new social identities. Stewart points out that rehabilitation, almost by necessity, focuses on deficits (with the goal of remediating them). But this process (particularly when it is unsuccessful or only partly successful) can have the effect of being a constant reminder of lost function or the importance of working towards ‘normal’ functioning, which can be psychologically damaging. Likewise, rehabilitation that is experienced as infantilizing and objectifying can also be harmful.
According to Stewart, rehabilitation professionals have not identified and challenged disabling barriers and ‘aversive physical and social characteristics of community contexts’ for disabled people, including the psychological effects of disability (15). Both ‘medico-rehabilitation and religious perspectives’ collude, he suggests, by focusing on restoration and cure.
The book reports that many of the participants strongly emphasized the role of religion in making sense of their brain injuries. It suggests that their religious commitments, beliefs and communities helped them to make sense of the injury, understand its purpose, apportion blame for it, deal with anger and reconstruct their lives after the injury. (While the anomalous extent of religiosity in America is well noted in previous research, Stewart does not refer to it in his discussion of this topic.)
Living with Brain Injury emphasizes the importance of community to developing a more positive identity as someone with a brain injury. For these women, such communities included religious communities, the Black community, the disability community, Centers for Independent Living, and the women’s community. Stewart also believes that ‘counternarratives’ which challenge dominant meanings of disability can be particularly important to an ‘affirmative,’ positive disability identity (11). These counternarratives can be found in the disability community and in disability studies (and Stewart particularly relies on those North American disability scholars who utilize a minority model approach). He often relies (uncritically) on the work of Tobin Seibers and Rosemary Garland Thompson, but does not highlight the omissions in their own arguments that stem from their own failure to engage with the brain injury community. This is unfortunate.
But more importantly, one is left to wonder: what are ‘affirmative’ identities of brain injury and disability? Why would they be any different – or resonate more with women with brain injuries – than their current struggles to define the differences between the old and the new self? I am not sure that Stewart explains the reasons for this, except for citing North American disability studies literature that has generally been humanities focused and has done little engaged work with the brain injury community.
The book appears to provide a strong critique of rehabilitation practices for people with brain injuries. However, it seems ironic that one of Stewart’s key informants in Chapter Two, which describes the rehabilitation experiences of these women, is a rehabilitation doctor who is highly critical of the American medical insurance system. He and another medical doctor (a neuropsychologist) also provide medical opinion on the women in Chapter One, which is entitled ‘People and Methodology.’ The contexts in which rehabilitation professionals can be effective allies with, and advocates for, people with brain injuries may be more complex than this simplistic critique suggests.
My final critique of Living with Brain Injury has to do with its methodology. There were 10 women who participated in the research. A key informant was incredibly active in the disability movement for years, and was involved with a Center for Independent Living in the American Mid-West. This would not necessarily be problematic, except for the fact that the vast majority of people with brain injuries do not become involved in such organizations. They are incredibly reluctant to identify as disabled; and often when they do become involved in such organizations, they become excluded because they have ‘challenging behavior’ such as aggressive outbursts and disinhibition that are related to damage to the frontal lobe. By largely relying on a snowball sample from a long-term disability activist, Stewart missed this key dynamic in the brain injury community. Brain injury advocates have long asserted that the general disability community excludes this population due to their lack of understanding of challenging behavior – and this is not recognized in Stewart’s book. Moreover, the participants in this book are not representative of the larger brain injury community. Six out of the 10 participants have been (or currently are) in graduate school. On the other hand, the epidemiological distribution of brain injury is skewed to poor and less educated people.
Studying the experiences of women with brain injuries is an important topic, and Stewart has broken some of the silences surrounding this under-researched population. There is much more work to be done on this topic, however.
Department of Sociology & Anthropology,
The University of Toledo, Toledo, OH, USA
[email protected]
© 2014, Mark Sherry
http://dx.doi.org/10.1080/09687599.2014.934060