Policy Press, Bristol (2013)
ISBN: 9781447305224 (hb)
Reviewed by Mark Sherry, University of Toledo
This book focuses on the experiences of people who developed with impairments or chronic illnesses in childhood, and over the years became become older people dealing with disability – filling an important gap in the literature, which had traditionally been dominated by research on people who had acquired their impairments at a later age. Adopting a lifecourse approach, and concentrating on Swedish examples, the book demonstrates that by exploring the intersections between age and lifelong disability, we can rethink notions of ‘successful ageing’.
“Time, age and the failing body: A long life with disability” by Eva Jeppsson Grassman reports the results of her incredible fieldwork – where she had followed fourteen Swedish blind or vision impaired people’s experiences for over 30 years (from the middle age until they were much older). This is an amazing contribution: we know so little about the experiences of disabled people over time, across their lives, and here is a goldmine of stories about their struggles, working lives, and post-retirement years. Grassman began her interviews with these research participants in 1981, and it is a testimony to her ability to sustain research relationships)as well as her commitment to the topic that she has been able to maintain such connections over such an incredibly long time frame. Many of the people experienced significant challenges in terms of work accommodations and adaptations, as well as recurring illness complications and unpredictable bodies. I came away incredibly impressed by the wealth of information Grassman has collected over the years, as well as the ways in which she situates people’s experiences in terms of their historical context, and the development of the disability rights movement over time.
In “Disability, identity and ageing,” Lotta Holme highlights the ways in which the experience of ageing among leading Swedish disability activists has been influenced by wider changes in disability policy and disability politics. She views their experiences through the lens of a “political lifecourse” which suggests that these activists have a “collective political disability identity” (p.36) and that their lifecourse is strongly influenced by patterns of double discrimination (based on age and disability).
The idea that people can “age successfully” with extensive physical impairments is the focus of a chapter by Annika Tagizadeh Larsson. Using interviews with twelve “younger elderly disabled people” aged from 65-72 who had both mobility impairments and an active lifestyle, Larsson stresses that “a senior with extensive impairments can achieve a fairly engaged, self-realising and recreational active lifestyle – if the necessary environmental, financial and supportive conditions exist” (emphasis in original, p. 66). Personal assistance, technical aids, environmental accommodations and other support are therefore crucial in ensuring that older people with impairments are able to fully enjoy their later years.
“Being one’s illness: On mental disability and ageing” by Per Bülow and Tommy Svensson explores the particular difficulties experienced by people with lifelong mental illness as they age. Stigma, loneliness and social isolation, as well as the effects of psychiatric treatment and institutionalization, had deeply affected their lives. Compared to nondisabled peers, their life stories focused less on work, the effects of retirement, and parental roles, and far more on their illness experiences. Even today, most of them are dissatisfied with their psychiatric care and lacked information about their illness, treatment methods, and adverse drug reactions.
Anna Whitaker analyses the experiences of 12 Swedish parents (nine women and three men) who have raised a disabled child from childhood until adulthood. Mostly, the children had congenital impairments, particularly cerebral palsy and spina bifida. The parents were aged from 52 to 85, and their children ranged from 25 to 50. Even as they experience their senior years, these parents have continuing caring roles and responsibilities, whether as direct service providers or as advocates. They often worried about what would happen to their children when they died. Whitaker believes that policies such as de-institutionalization, normalization and integration left these individuals and families without sufficient support, including disability and carer support.
In “Ageing and Care among Disabled Couples,” Cristina Joy Torgé uses interviews with nine couples over the age of 60, both of whom are disabled, in order to explore how people can simultaneously receive and provide care – and that researchers need to explore invisible care work, and the process of a disabled couple caring for each other affectively as well as practically in order to truly understand this dynamic.
My only real criticism of this book is that some key sociological concerns – such as class and gender – are largely absent in the analyses. But that does not diminish the fact that this is a groundbreaking book, in terms of opening up the discussion around ageing successfully with lifelong impairments.