KARIN BARRON (Ed.)
Studentlitteratur, Lund, Sweden, 2004, ISBN 91-44-02672-2
The Swedish sociologist Karin Barron has, in collaboration with researchers from Nordic and Anglo-Saxon cultures, edited an anthology entitled Gender and Disability. The intention of this book is to contribute to the international discussion about gender issues related to disability research.
Feminist research has only very recently included disability studies as part of the scientific examination of women's embodied lives and participation in societies and cultures. Disabled women and their sexual and reproductive life as it is experienced and constructed in different contexts and historical periods is the main topic of this book. The power of medical knowledge systems has constructed complex norms for reproduction in general. For disabled women the consequence of gender power has been more disastrous than it has for other women. In this sense this book makes an important contribution to writing on the hidden history of invisible women.
By introducing the readers to five empirical studies that illuminate how shifting political ideologies construct gender-specific ideas, the researchers discuss how reproductive rights cannot be taken for granted in the citizenship of disabled women and mothers. Reproductive rights are closely linked to hegemonic ideas of how life has to be lived in “correct” ways according to accepted ideals.
Kristina Engwall analyses doctor's evaluations of female patients’ behaviour in a mental hospital in Sweden in the period 1931–67. During this period children or adults with learning disabilities or auditory problems were often defined as “mentally retarded”. Girls and women suffering from such functional losses very easily lost their sexual dignity as well. They were seen as a threat to the social order since they did not behave like “ordinary women”. If they had children people thought the children would be like their mothers. And since they were unable to provide for themselves and their children economically, they were seen as a burden on society.
Traustadottir and Sigurjonsdottir write about their study of tree generation disabled mothers and their family network. They found that disabled mothers experienced emotional intimacy and social safety primarily from close female kin. But local welfare workers responded to their situation in different ways. If the women in the family contacted the local welfare office before the children of disabled women were born, they were “co-operative”. If not, they had a “problem”. The social workers decided how the dignity of such families should be constructed, and did not include the norms of the participants in their judgements.
Gisela Helmius discusses how disabled women are socialized to have non-sexual behaviour. Sexual affairs, flirting and erotic life are culturally associated with “normal” bodies. This implies that sexual feelings are in people's legs or arms and not interwoven in their social interactions.
In Nordic cultures there has traditionally been openness on sexual issues, at least at the rhetoric level, but ambivalence has also been communicated. On the one hand sexuality has been discussed as problematic; related to unwanted pregnancies, rape and harassment. On the other hand passion, desire and sexual pleasure has been kept away from teenage girls and young women. This has been usual for women in general. For disabled women the picture has been one dominated by non-sexuality, passivity and lack of information.
Karin Barron interviewed disabled women about how they construct and experience their gender identity and reproductive roles. Some of them associated motherhood with babies crying for milk in the middle of the night. Others had internalized their culture's picture of them as incompetent mothers. Some experienced their bodies with pleasure, saying that: “My heart beats. My body is strong and good”.
Kristjana Kristiansen invites the readers to enter what she calls “the country of mentally ill people” – a place with a female dominated subculture. She looks into “the networks of rooms” where the women live out their lives. Mentally ill people might experience their lives as marginal and “as if the rest of the world is passing by on the other side of the river”, as one of the women formulates it. However, they also have their strengths. Even if they feel excluded, they might insist on following their own feelings and demand to be taken seriously. If they cannot follow and trust their own emotional experiences, whose feelings should then be “real”?
Mentally ill women, as a group, are invisible and live in highly vulnerable positions. They are easily taken advantage of sexually, and violence and harassment might be more “normal” for them than for other women.
All in all this book is informative and raises important political questions. I had to read it twice before I understood that these stories belong to all of us, and as such are not stories about and for “disabled women”. The reason for this that the researchers have succeeded in showing how complex and interesting disabled women's stories can be. The issues facing disabled women are just as complex and difficult as they might be for everyone, but their lives are constructed as different, invisible and powerless.
By introducing the audience to the world of disabled women's lives and history, we all learn that “their” history is also part of “our” history. Women's struggle for sexual and economic independence is a difficult and complex sport for all women – but a high-risk extreme sport for disabled women. The question is: how many variations of “normal femininities” exist … and who has the power to define and count them?
Lise Widding Isaksen
Department of Sociology
University of Bergen, Norway