Stories from the margin: Mothering a child with ADHD or ASD

Book Review

Lorelei Carpenter and Elke Emerald

ISBN: 978-1921214-43-1; 2009; ii+206 pages; Post Pressed, Teneriffe QLD;

Sandra Sytsma
Rainbow Beach QLD

Lorelei Carpenter and Elke Emerald practise a research ethic centred on making a difference in people's lives. In their new book, Stories from the margin, these authors relate a research journey with mothers of children with ADHD or ASD. In addressing how the politics of difference (Young 1990) are lived out in the experience of women mothering children socially and medically labelled as 'disabled' and 'different', Carpenter and Emerald's sensitive yet candid work supports the empowerment of these mothers in enabling them to resist the oppression of marginalisation and to insist on being included in cultural narratives of good mothering.

The main title reflects the social relegation of mothers of children with ADHD or ASD to the edges of constructed texts of 'good mothering' because their children are not often 'good children'. Put bluntly, the normal implication, and excuse for exclusion, is that bad children are the result of bad mothering. Carpenter and Emerald invited a group of mothers who inhabit the margins of socially acceptable mothering narratives to tell their stories of what living on the sidelines is like for them. Narrative and thematic analyses of these mothers' experiences revealed a range of themes that were used to structure the latter part of the book.

The early chapters set the scene by reviewing the dominant past and present narratives of mothering, and how good mothering is framed in fields such as medicine, psychology and education. An exploration of the nature and contradictions in diagnosis and treatment of ADHD and ASD is followed by an unpacking of the concepts of disability and difference. Important questions are raised about the impact of positioning disability within the child, and by association, in the mother, or within a society unwilling to meet the needs of those perceived as different.

Under the topic of good mother/bad mother, Carpenter and Emerald then introduce the first group of identified themes: motherhood as a vocation, guilt, loss of mother role, counter-narrative mother, advocate, strong, not a bad mother. Although the authors interpret the stories they heard in terms of the topic, the participant mothers' authentic voices feature prominently and demonstrate how they struggle under, with, and against their oppressive marginalisation from the texts of good mothering.

A further topic of mothers' experiences brings together themes that speak of how mothering children with ADHD or ASD affects these women personally. Stories tell of mothers being silenced by not being given a voice and by not being heard when they speak. They tell also of being silent, of being unable to speak of their experience and needs. Then there is silence, the absence of any positive feedback on their mothering. Opportunities of having a voice and being heard, and being actually listened to and witnessed, were rare but much welcomed. Such occasions, as with the interviews in this study, were emotional and painful but ultimately cathartic and healing. Further themes identified trouble in various forms: mothers troubling the boundaries of cultural and professional narratives with their alternative ways of being good mothers, and mothers themselves being troubled by the labels put on them and the isolation they endured.

The bleakness of the mothers' stories is rescued with the authors' understanding, acceptance and hope as they explore two ideas for 'coming in from the margins'. First, in response to the women's stories identifying ADHD and ASD as disabling conditions for both the child and the mother, Carpenter and emerald reflect on the mothers' lived experiences in terms of Young's (1990) constructs of oppression, namely exploitation, marginalisation, powerlessness, cultural imperialism and violence. Second, they speak for and with these mothers as they now 'work to claim their own space in the text of good mothering and to legitimise the margins'. The courageous telling of their stories is only the beginning.

Stories from the Margin is 'good medicine' for all mothers, fathers and families, as well as institutions, professionals and policy makers. Through the voices of the authors and the mothers of children with ADHD or ASD, it shows us that we can do much better in interpreting what inclusion means in a just society that respects and celebrates difference. For me, the book has been a sobering sojourn in the life-world of otherness; a time which evoked empathy not only with the mothers in the study but with the mother in my family who has two children with ADHD and who bravely read this work with me. Together, we appreciate the 'good doctors' who wrote it.

This research made a difference in the lives of the mothers who shared their stories from the margins in fostering a transformation from being disabled by their children's difference to being enabled by that same difference. It also made a difference for the mother who participated with me in reading and responding to this book. Her mothering was validated by these other mothers whose stories demonstrate that they 'walk in her shoes'. It has made a difference, too, in my life as a mother, educator and person implicitly labelled as disabled. Stories from the Margin, although specifically focused on the mothering of children with ADHD or ASD, has potentially a wide audience because it exemplifies and explores the contested nature of difference and our individual and social responses to it. For readers receiving these stories and interpretations that 'tell it like it is', their personal challenge will be to make a difference in how they address and relate to 'other'.

Toggle references