Over the past forty years, the families of children and adults with disabilities have been a tremendously important force for positive changes in services for people with disabilities. In the past decade, the research and the materials by and about families have “caught up” with the outlook and perspectives many families have always had. The books reviewed here are positive about and helpful to families who have one or more family members with disabilities, as well as to professionals and others interested in families. Additionally, we concentrate here on materials that can be used by and on behalf of people interested in change. PLEASE NOTE: This listing was developed in 1992. Although it does not contain updated resources, it contains information that may continue to be useful to people who are concerned about supports and services for people with disabilities.
Biklen, D., & Baker, M. (1979). Principles of whistleblowing. Syracuse: Center on Human Policy.
This paper provides a clear understanding of why whistleblowing needs to occur. It offers guidelines that help prioritize the most effective steps for carrying out this task. It is a tool which could be used to expose illegal, immoral and otherwise wrong practices in human services, business, government and other organizational settings.
Crossley, R., & McDonald, A. (1984). Annie’s coming out. New York: Penguin Books Ltd.
This is the truly remarkable and moving true story of Anne McDonald who, because of severe cerebral palsy, spent fifteen years in an institution, St. Nicholas Hospital for children in Melbourne, Australia, and Rosemary Crossley, who worked as an assistant to the hospital psychiatrist, and the long battle they fought against an obdurate bureaucracy to stop the incarceration of severely handicapped youngsters on grounds of incompetence and infirmity. Anne describes her struggle to survive against all odds and indignities in an environment that believed her to be “non-human” and incapable of any communication, and her excitement when Rosemary recognized her ability and showed her an alternative, nonverbal means of communication that opened up a new world for her. Staking her job and professional reputation to get Anne and a handful of other young people out of St. Nicholas, Rosemary describes the many hours spent trying to convince unbelieving hospital and court officials that Anne is capable of independent thought, the problems encountered and overcome as Anne makes her first attempt at living outside the institution, the setbacks and the victories that finally led to the closing of St. Nicholas Hospital.
It is a story that will inspire and give renewed hope to advocates, parents and professionals and to those who believe that all people deserve to live with dignity.
Des Jardins, C. (1980) How to organize an effective parent/advocacy group and move bureaucracies; and How to get services by being assertive. Coordinating Council for Handicapped Children, 408 South Dearborn, Room 680,Chicago, IL 60605.
Both of these handbooks serve to guide the reader through advocacy issues. They were specifically written for parents and siblings of children with disabilities, but they are generalizable to any situation that calls for advocacy in order to obtain necessary services.
The handbooks are instructive and deal with the “how to’s” of organizing advocacy efforts. They also are written with a strong amount of encouragement to get involved in the issues which face the reader or his/her relative. The tone of these handbooks is that of an assertiveness workshop, and they tend to be oriented toward people who are relatively inexperienced in speaking out for what they believe.
Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and empowering families: Principles and guidelines for practice. Cambridge, MA: Brookline Books.
In contrast to much of the literature and practice focussing on family deficits, this book presents an alternative conceptualization of families and a new approach to early intervention. The “enablement” or “empowerment” approach explores four themes: 1) the entire family should be the focus of intervention; 2) family needs should be met in such a way that family competence is increased; 3) practitioners must believe that parents have the right to determine their family’s course of development; and 4) positive family functioning should be recognized and promoted. This book will be especially helpful for early intervention specialists but will also be helpful for anyone working with families.
Fewell, R. R., & Vadasy, P. F. (Eds.) (1986). Families of handicapped children: Needs and supports across the life span. Austin, TX: Pro-Ed.
Several features of this book make it unusual and interesting to read. The use of an ecological and sociological framework of analysis to explain the reciprocity of familial relationships helps us understand how different members, disabled and nondisabled, can impact upon each other. The authors also employ a life span approach which acknowledges the present and potential impact and needs of family members at varying stages of their lives. Most significantly, it presents the hitherto little-known perspectives of siblings, fathers, grandparents and single mothers of children with disabilities. This is done by using extensive quotes, by including articles written by family members, and stories or experiences related by them.
The book also deals with the impact of other environments on the family. Public school, social networks, church and community all have a part to play in the life of people. The impact these environments can have on children with disabilities and their families, how roles are redefined, and how families can and do cope, is discussed. This is recommended reading for professionals, who may better appreciate how a handicap can affect the ecology of a family, and for parents, who may learn of the educational and community supports which address the special needs of the child and the family.
The G. Allan Roeher Institute. (1989). The power of positive linking: How families can empower people who have a mental handicap through mutual support groups. The G. Allan Roeher Institute, Kinsmen Building, York University, 4700 Keele Street, Downsview, ON M3J 1P3, CANADA.
This study documents the evolution of five support groups across Canada. Each group was made up of families with a disabled member who came together during times of crisis and/or trying to identify more opportunities for their family members with disabilities. Through in-depth interviews, the experiences of these mutual support groups were collected. The study describes how the five support groups were established, the meaning, process, and goals of “support,” and the internal functioning of the groups over time. How the support groups established ties to other groups and agencies in order to obtain needed resources to meet their goals is also discussed.
While the title suggests otherwise, this study really explores the empowerment of the families through the mutual support groups.
Goldfarb, L. A., Brotherson, M. J., Summers, J. A., & Turnbull, A. P. (1986). Meeting the challenge of disability or chronic illness: A family guide. Baltimore: Paul H. Brookes Publishing Co.
This book is an extremely unique and valuable tool, written for all families experiencing any type of situation involving care of an ill or disabled family member. It is also an important resource for professionals working with families. Filled with practical worksheets, activities and exercises, it provides information and techniques for family members to utilize in coping with their particular situation.
Part I, “Taking Stock,” discusses methods of coping, relying on one’s value system, and various types of social and professional support. Part II, “Problem Solving,” deals with family communication, problem definition, brainstorming for solutions, evaluation of alternatives, and action toward solving problems. The authors also include an Appendix of Resources, which contains a number of bibliographies on various subjects and a list of support organizations.
Governor’s Planning Council on Developmental Disabilities (1989). ACTION: A manual to help you organize. Governor’s Planning Council on Developmental Disabilities, Minnesota State Planning Agency, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55155.
This handbook is designed to offer some common-sense tactics for consumer advocates to use in achieving their goals. It explains the strength gained by organizing and knowing your allies. Listed are specific sources of background material and where to obtain them. It explains writing techniques and provides a sample questionnaire, and has copies of petitions and letters to aid in canvassing and developing new support for your group. There is much valuable information on how to meet with officials in person and on public speaking. This clearly written manual offers many suggestions and would prove an asset to any group or individual desiring to organize effectively.
Copies are available free of charge by contacting the above address or telephone number.
Herr, S. S. (1987). The future of advocacy for persons with mental disabilities. Rutgers Law Review, Winter/Spring 1987, 39(2/3).
The introduction to this article focuses on the evolution of the American movement to provide advocacy services for people with mental disabilities. Its main theme is the discussion of the need to assure people access to qualified advocates who can aid in the understanding and implementation of mental disability law. Along with describing the need for advocacy services, this article considers the availability of such advocates, analyzes several advocacy models and outlines several critical challenges whose resolution will determine the future of this field.
The advocacy models analyzed include legal advocacy, self-advocacy, lay advocacy, friend advocacy, human rights committees, and internal rights protection functions that designate staff members to be “rights advisors.”
In the development of an integrated and comprehensive advocacy network, the author emphasizes outreach activities, the right of access to the courts, and sources of public funding for advocacy assistance.
Kahn, S. (1982). Organizing–A guide for grassroots leaders. New York: McGraw-Hill Book Company
This book is a comprehensive, clearly written resource that explains the benefits of organizing as well as where and how to start. It offers insight into building organizations, identifying constituencies, selecting leaders and encouraging membership. It provides specific tactics for carrying out the strategies that your organization develops based on the goals of the group. Also addressed are media contacts and the advantages and disadvantages of including the media in various communication strategies of the organization. Money management and coalition building are two other areas that the book highlights.
This reference tool is valuable to both individuals who want to start a new group and leaders of established organizations.
Moise, L. E. (1980). As up we grew with Barbara. TASH, 7010 Roosevelt Way, N.E., Seattle, WA 98115.
This book belongs to an important genre of first-person accounts by parents who, after becoming activists in the parent movement, wrote about their experiences. Many of these parents, who are now in their sixties or seventies, paved the way for today’s strong parent movement. This book describes Barbara’s growth, but it also traces the author’s transformation from parent to activist, and discusses many issues rising out of the transformation.
Pieper, E. (1977). Sticks and stones: The story of loving a child. Syracuse: Human Policy Press.
This book provides many examples of parent advocacy as it tells the story of Jeff Pieper and his family’s life with him. Jeff was almost universally “written off” by professionals, especially doctors and school administrators, who seemed not to care whether he lived or died. His family and his community, on the other hand, saw him as valuable and worth the work and struggles they went through to give him a chance. Betty Pieper’s story communicates as much about our society as it does about the Pieper family. She writes with warmth, determination, and anger.
Like most new mothers, Betty Pieper knew little about disabilities when her son was born. Choosing to love him, she quickly encountered the many ways in which our society discriminates against people with disabilities, and she also learned how to advocate for him and for all people with disabilities. This is a wonderful book by a mother who is also an effective agent for change and a good writer.
Shields, C. V. (1987). Strategies: A practical guide for dealing with professionals and human service systems. Human Services Press, P.O. Box 421, Richmond Hill, ON L4C 4Y8, CANADA.
Parent/professional interactions don’t always have to be confrontational. This “how to” book candidly appraises the ways that many professionals within the system of human services often can become combative with parents of disabled children, and tells parents how to be effective in their role of advocate for their child by converting confrontational situations into cooperative ones instead.
The book is simply written, uses no jargon, and offers practical tips. When access to a professional or to information is difficult, it is useful to know “the system,” to be able to distinguish between professional objectivity and professional indifference, to know what one’s rights are and how to apply pressure, if necessary. Basing itself on the understanding that to require special services is a normal, acceptable need and not a sign of inadequacy, it exhorts parents to be well-informed, to stay involved, and to participate. An extensive list of major support groups for parents is included.
Taylor, S. J. (1979). Negotiation: A tool for change. Syracuse: Center on Human Policy.
This paper is designed to enable consumers, parents and advocates to negotiate effectively, whether it is for short or long-term change. It concisely outlines steps for general negotiation preparation such as knowing when to negotiate, obtaining backing by a consumer or interest group, setting up the negotiation, targeting agency heads/persons with authority, organizing meetings, forming a negotiating team and preparation for the actual negotiation. It also lists strategies for effective negotiation and follow-up techniques.
Turnbull, A. P., & Turnbull, H. R. (1990). Families, professionals, and exceptionality: A special partnership (Second ed.). Columbus, OH: Merrill Publishing Co.
This book, which can be used as a textbook for students training to become professionals, will also be of interest to those who are currently professionals and to family members. It is value-based, in that it identifies six core values about people with disabilities and their families and points out ways throughout the book to incorporate these values into professional practice. This edition emphasizes the application of family-systems theory in professional practice, taking into account the variety and diversity in families and the various life cycle stages families generally pass through.
The chapters explore the historical and current roles of parents, family characteristics, family interaction, family functions, family life cycle, communication skills for professionals, strategies for communication, P.L. 94-142, various aspects of family involvement and legal issues, ways of supporting families and helping them cope, and professional ethics and morals. The book presents positive ways of understanding and working with families, giving many examples and quoting many parents. The points of view of family members in many different situations are presented, so that the reader comes away with a feeling of having met and talked frankly with many parents, siblings, and extended family members. The chapter on ethics and morals is replete with case examples that present moral or ethical conflicts as well as succinct descriptions of sources of moral principles for students to consider. Throughout, the book provides references and data to back up the content, and includes an extensive reference list and two appendices (resources for families and professionals and a guide for gathering family information through discussion) at the end.
Turnbull, H. R., & Turnbull, A. P. (Eds.) (1985). Parents speak out: Then and now. Columbia, OH: Charles E. Merrill Publishing Co.
This book is a collection of essays by parents (twelve mothers, seven fathers) and a few brothers and sisters of people with disabilities. Many of the authors are leaders in the parent movement, and a number have qualifications as professionals in some aspect of the health or disability field. Some of the essays by professionals reflect on the difference in perspective when one is in the parent role and dealing with the professionals who exercise power over the services one’s child receives. Many of the essays are passionate, describing the personal feelings of the authors in parenting a child with disabilities and dealing with societal and professional pressures and prejudices. A classic in the “parent” literature.
Turnbull, H. R., Turnbull, A. P., Bronicki, G. J., Summers, J. A., & Roeder-Gordon, C. (1989). Disability and the family: A guide to decisions for adulthood. Baltimore: Paul H. Brookes Publishing Co.
This book is a planning guide for families who have one or more members with disabilities. It specifically emphasizes the period of transition to adulthood, but can be used by any family wishing to consider alternatives for a disabled family member. The book provides a wealth of help and information for families thinking about the future, such as a “preference checklist” that helps families determine the preferred supports and services their family member will need. There are two chapters on advocacy that encourage parents to speak out vigorously within existing services for what their child needs or to participate in creating new services if existing services are unresponsive.
These two chapters assume that the family members have made explicit their needs and dreams for the person with the disability, and have decided, together with that person, what the future for that person should look like. They also assume that many of the actual services the person and the family may encounter will fall far short of the picture they have created, and that families must find ways of causing change to meet ther family members’ needs.
Worth, P. (1988). You’ve got a friend. In The pursuit of leisure: Enriching the lives of people who have a disability. The G. Allan Roeher Institute, York University, Kinsmen Building, 4700 Keele Street, Downsview, ON M3J 1P3, CANADA
The honesty of Pat Worth’s account of how people with disabilities are trapped without the support of advocates is moving. It is a truly personal perspective on the need for advocates to aid persons with disabilities in their quest for freedom and choice.
Note: To order materials available through the Center on Human Policy or Human Policy Press, please write to Rachael Zubal, Center on Human Policy, 805 South Crouse Ave., Syracuse, NY 13244-2280 for publication lists.
This article was prepared by the Research and Training Center on Community Integration, Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University, with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on disability and Rehabilitation Research, through Cooperative Agreement No. H133B00003-90. No endorsement by the U.S. Department of Education of the opinions expressed should be inferred.