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Parents with Intellectual Disabilities: Past, Present and Futures

ISBN: 978-0-470-77295-9
290 pages
May 2010
Parents with Intellectual Disabilities: Past, Present and Futures (0470772956) cover image


The first international, cross-disciplinary book to explore and understand the lives of parents with intellectual disabilities, their children, and the systems and services they encounter
  • Presents a unique, pan-disciplinary overview of this growing field of study
  • Offers a human rights approach to disability and family life
  • Informed by the newly adopted UN Convention on the Rights of Persons with Disabilities (2006)
  • Provides comprehensive research-based knowledge from leading figures in the field of intellectual disability
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Table of Contents

List of Contributors.

Foreword (Steven J.Taylor).


Introduction (Gwynnyth Llewellyn, Rannveig Traustadottir, David McConnell, and Hanna Björg Sigurjónsdottir).


1. Becoming a Mother – Becoming a Father (Rachel Mayes and Hanna Bjorg Sigurjönsdóttir).

2. Looking Back on Their Own Upbringing (Gwynnyth Llewellyn and David McConnell).

3. Family Within a Family (Hanna Bjorg Sigurjönsdóttir and Rannveig Traustadottir).

4. Children and Their Life Experiences (Jytte Faureholm).

5. Understanding Community in the Lives of Parents with Intellectual Disabilities (Gwynnyth Llewellyn and Marie Gustavsson).

6. Citizenship and Community Participation (Brigit Mirfin-Veitch).

7. Parenting and Resistance: Strategies in Dealing with Services and Professionals (Rannveig Traustadóttir and Hanna Björg Sigurjónsdottir).


8. Parenting Education Programs (Maurice Feldman).

9. Supported Decision Making forWomen with Intellectual Disabilities (Sue McGaw and Sue Candy).

10. Turning Policy Into Practice (Beth Tarleton).

11. Caught in the Child Protection Net (David McConnell and Hanna Björg Sigurjónsdottir).

12. Turning Rights into Realities in Quebec, Canada (Marjorie Aunos, Laura Pacheco, and Katherine Moxness).

13. Supporting Mothers’ Community Participation (David McConnell and Gwynnyth Llewellyn).

14. Advocacy for Change: “The Final Tool in the Toolbox?” (Linda Ward and Beth Tarleton).

Conclusion: Taking Stock and Looking to the Future (David McConnell, Gwynnyth Llewellyn, Rannveig Traustadóttir and Hanna Björg Sigurjónsdottir).


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Author Information

Gwynnyth Llewellyn is Professor and Dean of the Faculty of Health Sciences, University of Sydney, and Director of the Australian Family and Disability Studies Research Collaboration. Professor Llewellyn's work led to the world's first national strategy to support parents with learning difficulties and promote a healthy start to life for their young children.

Rannveig Traustadóttir is Professor and Director of the Centre for Disability Studies in the School of Social Sciences, University of Iceland. She has been one of the leaders in developing Disability Studies as a scholarly field in the Nordic countries and is the former president of The Nordic Network on Disability Research.

David McConnell is Professor in the Faculty of Rehabilitation Medicine, University of Alberta. Professor McConnell has been conducting research in the field of parents and parenting with intellectual disabilities in Australia for over 15 years. He is now expanding his research program in Canada.

Hanna Björg Sigurjónsdóttir is an Assistant Professor at the University of Iceland. She has conducted collaborative research with parents with intellectual disabilities for 15 years. Together with Rannveig Traustadttir she has published Contested Families: Parents with Intellectual Disabilities and Their Children (1998) and Invisible Families: Mothers with Intellectual Disabilities and Their Children (2001).

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"This excellent collection of essays begins from the human rights approach epitomised by the UN Convention on the Rights of Persons with Disabilities ... This collection challenges policy-makers to do more and better, and provides much of the evidence to underpin such improvements." (Disability, Pregnancy & Parenthood International, 1 September 2011)

"Parents With Intellectual Disabilities: Past, Present and Futures is thought provoking worth reading for those working with families with intellectual disabilities." (PsycCRITIQUES, February 2011)

Parents with Intellectual Disabilities: Past, Present and Futures is essential reading for anyone interested in the lives of parents with intellectual disabilities, and it is recommended reading for everyone in the broader field of developmental disabilities. It provides a synthesis of current research and practice, along with clear picture of the challenges ahead. Its contents are both comprehensive and compassionate. The international authorship provides an important global perspective.’
Dr Dick Sobsey, University of Alberta, Canada

‘The birth of a new child tends to be a happy event, but if parents are intellectually disabled it is likely to be associated with "danger" and a case for child protection agencies. The point of departure of this book, however, is the 2006 UN Convention on the Rights of Persons with Disabilities, Article 23, on the elimination of discrimination related to marriage and family. The book discusses the experiences of parents with intellectual disabilities and their children, and also supports such parental training and the role of extended families. It is a very welcome contribution to a topic that tends to be negatively oversimplified.’
Jan Tøssebro, Norwegian University of Science and Technology

‘This is a unique exploration – from an international and multi-disciplinary perspective – of the lives and experiences of parents with intellectual disabilities, their children and the services that both enable and disable them in their parenting. Its combination of scholarly research and "insider" accounts makes it essential reading for researchers and practitioners around the world.’
Professor Dorothy Atkinson, The Open University, UK

Parents with Intellectual Disabilities is a thoughtful and comprehensive collection by an international team that blazes new trails for inclusion and equality for adults with intellectual disabilities. By asserting that forming a family and parenting are pathways both to social value and personal fulfilment, it challenges us to question our own values and assumptions about adults with intellectual disabilities as parents. An essential text for a full understanding of disability in the world of today and tomorrow.’
Ivan Brown, Ph.D., Centre of Excellence for Child Welfare, University of Toronto, Canada

‘A rare achievement, this book integrates clear-eyed analyses of the social circumstances faced by people with intellectual disability who parent or long to parent, strong research on critical aspects of this neglected human rights issue, and creative guidelines for improved practice. We may believe that Eugenics is over, long discredited. But what is its legacy in the lives of people with intellectual disability in relationships, pregnancy, decisions about parenting, and actual parenting? What do their children say? And how can we overcome the remaining barriers of history?

‘This must-read book explores the experiences of mothers and fathers with intellectual disability and their children, contextualized within their communities.  It investigates the systems and services that do or do not support successful parenting, and explores modern complexities of gender, terminology, citizenship, public policy, and human rights.’
Ruth Luckasson, Distinguished Professor of Education, University of New Mexico, US

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