KRISTJANA KRISTIANSEN & RANNVEIG TRAUSTADÓTTIR (Eds)
Lund: Studentlitteratur, 2004, ISBN 91-44-03826-7
The crystal clarity and jargon-free accessibility of the writing in this anthology make it a joy to read. The conceptual sophistication demonstrated in its articles, and the depth of analysis explored in many of them, mean that this volume advances significantly the fields of disability studies and gender studies worldwide.
The scholarship here is impressively up-to-date with the literature in English of both fields. The first chapter, written by Rannveig Traustadóttir, one of the editors, offers a brief, clear discussion of debates about the meanings of both “disability” and “gender” and a description of the kinds of research that have examined the intersection of disability and gender. Several other articles (notably chapter 2, also by Traustadóttir, on research at the intersection of gender and disability; chapter 3, by Kristina Engwall, on the history of women diagnosed as “feeble-minded”; and chapter 14, by Vappu Viemerö, on violence against disabled women) contain excellent summaries of theoretical and/or historical disputes. Quite apart from the valuable new research they present, these articles would be very useful to students in gender studies, women's studies and disability studies for their overviews of the issues and as guides to the literature.
A disability-positive, non-medical perspective is consistent throughout the volume. By this I mean that the authors do not assume that being disabled is a straightforward deficit in a person's life. They leave open the possibility that people's disabilities have advantages as well as disadvantages, and sometimes they draw attention to the advantages (as in chapter 4, by Gisela Helmius, which looks at some of the experiences of three generations of physically disabled women in Sweden). Nor do they assume that a medical diagnosis of structural or functional abnormality is an accurate or complete description of a disability. They recognize, and their research demonstrates, that reactions to the person's physical or mental differences and failures to accommodate the person's needs are usually at least as important in disabling her/him as the differences themselves. The social constructionist approach is perhaps most strongly represented in the article by Hannele Harjunen, who uses the social model of disability to shed light on medical, social and political/legal discourses about obesity and examines the controversy over classifying obesity as a disability.
On the other hand, the authors represented here do not observe an unspoken prohibition, often found where social constructionist analyses of disability are supported, against describing impairments or articulating the realities of living with them. Indeed, several authors explicitly question adherence to the social model of disability, which has been criticized recently, especially by feminist researchers, for minimizing the suffering and practical difficulties that impairments present in daily living. For example, Kristjana Kristiansen, whose article is based on a 5-year study of 36 women in Norway with long-term mental health problems, says:
Most of the contributing authors are non-disabled (by the editors’ description); only one identifies herself in the text as disabled. I confess that, in an anthology of research on disability, the fact that most of the researchers are non-disabled makes me wary of encountering an objectifying, outsider's perspective on disabled people's lives. Yet in reading this anthology, my overwhelming impression was of respectful solidarity with people with disabilities. Moreover, here the issue of how the researcher's social identity affects the research process is confronted explicitly. For example, in chapter 2, Rannveig Traustadóttir discusses feminist critiques of the power politics involved in doing research among a group of people to which one does not belong and how those critiques affected her own development as a researcher. Fortunately for us, she found a topic she was confident in pursuing from her social position and experience: how the reforms internationally to deinstitutionalize people with intellectual disabilities depended upon the availability of women's unpaid caregiving labour at home and their low-paid caregiving labour in service systems. In this summary of her findings, she gives an account of gendered pressures to make emotional commitments to people in need that is clearer and more direct than I usually see in discussions of caregiving to people with disabilities. She demonstrates that “combining issues of gender and disability allows us to examine care work from a new perspective, enabling us to understand its meaning and significance for everyone involved” (p. 66). Her research is an important complement to such recent philosophical work on caregiving as Eva Kittay's Love's Labor: Essays on Women, Equality, and Dependency (1999).
… the medical mind-set on the one hand, and the notion that madness is a mere social construction and perhaps something to celebrate on the other hand, both seem potentially harmful and reductionist, albeit in very different ways. A central finding from this study indicates that ‘something’ exists, which we have called being crazy, but also that the social consequences are numerous and often more devastating, as well as complex. (p. 388)
In half of the articles there is a definite emphasis on the experiences of girls and women, especially their experiences of daily life, both as non-disabled caregivers to disabled people and as disabled women. One sees here the influence of Dorothy Smith's sociology of everyday life (and it is acknowledged in four articles), where the goal is to notice and draw attention to social arrangements and processes that are so taken for granted in a society that they are not normally noticed. Applied to women, these include the unpaid labour women do to provide care to others and keep things running smoothly, and the often subtle ways that gender-“appropriate” behaviour was and is taught to girls and women and demanded of them in daily life both inside and outside homes, schools and institutions.
Notwithstanding this emphasis on girls’ and women's lives, several articles investigate gender differences in the experience or treatment of males and females with disabilities, and some examine the interaction of gender expectations with disability in the lives of boys and men. An example of the former is the article by Ingrid Fylling, which discusses how the educational category of “special needs” tends to be gendered male (70% male in Norway) and reports on an interview study of gendered patterns in the ways teachers interpret the classroom behaviour of boys and girls with disabilities. An example of the latter is Hanna Björg Sigurjónsdóttir's ethnographic study of intellectually limited fathers in Iceland and their treatment by formal support services; she found that the service system disempowers the fathers by concentrating support primarily on mothers and children.
Having taught courses on feminist research methods for more than 20 years, I have a particular interest in methodological issues. Therefore, I appreciated the authors’ clear descriptions of the methods they used, of the theoretical contexts in which they are working, and of the methodological concerns that influenced their choices. In addition, I found here some excellent examples of interactive analyses. Interactive analyses reject the assumption that multiple factors of social disadvantage are simply additive: that we can know, for example, what it is to be a disabled woman in a society if we know what it is to be disabled (no gender specified, i.e. assumed neuter or male) and what it is to be a woman (no disability status specified, i.e. assumed non-disabled). Interactive analyses are prepared to find, on the contrary, that disability changes the significance, social implications and experience of gender, and that gender changes the significance, social implications and experience of disability. In this volume, there are interactive analyses that take into account various combinations of gender, disability, sexuality, class, age, generation, and cultural background. For example, “The impact of gender on parental response to children with disabilities: a study of Pakistani families in Norway”, by Torunn Arntsen Sørheim, examines the hypothesis, based on the author's observations of a strong boy preference among Pakistanis in both Pakistan and Norway, that it is worse for Pakistani parents to have a son with a disability than a daughter with a disability. An ethnographic study of 30 families and their 35 children diagnosed with neurologically-based disabilities found the hypothesis to be false, which is interesting in itself, but what held my attention were the detailed, respectful descriptions of the daily lives of these families, and the complexity of the author's analysis of their situations and reactions. I find that interactive analysis in research is more often recommended than practised. This is how it should be done.
Another outstanding example of interactive analysis is Marjo-Riitta Reinikainen's study of the discourse about disabled women and men in fictional stories written, at the request of the author, by graduate students and graduated professionals, most of them women who are or soon will be working in healthcare or social services. The writers were shown photographs of either a woman in a manual wheelchair or a man in an electric wheelchair and asked to invent the character's story. Reinikainen not only analyses the resulting stories for their implications about the intertwined meanings of disability, masculinity and femininity but also questions the significance of discourse studies and the relationship between discourse and the treatment of disabled people by social practices and services.
I encountered a few minor disappointments among the articles. I will discuss one, since it involves questions of method. When research is based on interviews, I find that the author's paraphrasing and summarizing the responses, without quoting the interviewees, or quoting them only rarely and briefly, frustrates me as a reader. First, it leaves me with only the researcher's interpretations, preventing me from comparing them with what the interviewees said. It's not that I'm particularly suspicious of the researcher's interpretations (and, in any case, I must still rely on her/him to select significant passages from the interviews), but that I prefer to have larger portions of the data available to me for comparison. I also want to hear the interviewees’ voices, their own ways of expressing their thoughts and feelings; it makes them come alive in my mind. Moreover, there is the ethical consideration that quoting them sometimes makes more respectful use of the interviewees’ contributions to the research than merely paraphrasing or summarizing them. This aspect of chapter 12, “Retaining and regaining womanhood after becoming disabled,” by Eva Magnus, disappointed me. On the other hand, I was very impressed by the same author's willingness to appreciate her interviewee's choices, even when they were more traditionally feminine than she might have expected from modern Norwegian women, and by her imaginative understanding of the problems of self-identity faced by women who became disabled as adults.
My few disappointments are small matters compared with the scope and depth of this anthology and the intellectual, ethical and political integrity represented in it. In reviewing an anthology that contains so many very fine articles, it is not possible even to begin to do them all justice. I have discussed only those articles that illustrate certain strengths of the anthology or issues of special interest to me. Other readers will find much more to interest them. No one working in disability studies or gender studies should miss this book.
Professor Emerita of Women's Studies
Simon Fraser University, Canada