The resources in this division deal with a variety of issues that all of us, whether or not we have disabilities, see as basic needs in our lives. They are divided into the following sections:
Self-advocacy and broader advocacy efforts are critical for people with disabilities and their allies. Additionally, there is much discussion today about informal support (i.e., support that is given based on arrangements or relationships that don't involve pay or a formal contract). The materials in the "Families," "Acceptance, Relationships and Community," and "Women and Care Giving" sections approach informal support from many perspectives.
The fundamental right of speaking for oneself has long been denied to people with disabilities, who have usually had decisions made for them about every detail of their lives. They were, in other words, taught dependence. In the past twenty years, however, people with disabilities have organized movements (e.g., the self-advocacy movement, the independent living movement, the "psychiatric survivors" movement) that encourage and support people with disabilities to speak for themselves and determine their own futures. An exciting recent development has been that the leaders and members of the different movements are talking to and including each other, recognizing the commonalties between them and the issues they face.
The materials in this section emphasize the self-advocacy movement, which was organized by and for people with developmental disabilities, but the section includes materials produced by other groups as well.
TITLE: Read my lips -- It's my choice
AUTHOR: Allen, W. T.
PUBLICATION INFORMATION:
TITLE: The power of self-advocacy: Making thunder
AUTHOR: Bowen, J.
PUBLICATION INFORMATION: 1994
TITLE: Community Advocacy Press: People with Developmental Disabilities Speak Out for What They Believe
AUTHOR: Capabilities Unlimited
PUBLICATION INFORMATION
TITLE: Learning about self-advocacy series
AUTHORS: Crawley, B., Mills, J., Wertheimer, A., Whittaker, A., Williams, P., & Billis, J.
PUBLICATION INFORMATION: 1988
Each of these books deals with an interesting array of topics. The first book discusses the meaning of self-advocacy and its uses and helps to create an awareness of an individual's rights and responsibilities in a free society. The other books deal with some of the issues of setting up an advocacy group and the organizational guidelines that are necessary for its efficient functioning. There are also suggestions on networking with other groups and on dealing with issues of publicity. One of the most important features of the last book is that is highlights particular skills in areas that facilitate group dynamics like communication, listening, and being assertive.
A particularly strong feature of this set of books is the simple language that is used to communicate its intent. Another strength is that it emphasizes that it is alright to ask people for help if one needs it. In this effort it also offers a section on how to choose an advisor for the group who will not lead but empower. Each section in each book has a number of exercises, and summaries of the important points that the section articulated. Also provided are a list of resources that could be used to complement the texts. In terms of a book that offers good suggestions, without being didactic, this book scores high.
TITLE: The last civil rights movement: Disabled People's International
AUTHOR: Driedger, D.
PUBLICATION INFORMATION: 1989
Driedger articulates what the Disabled People's International (DPI) defines as a disability: the inability of the social environment in the community to accommodate to the needs of people who have limitations. She also points out that historically people with disabilities had little to say in any of the policies that are affecting their lives. In light of these philosophies, DPI was born as an organization "of" handicapped individuals rather than an organization "for" handicapped individuals. The book goes on to describe the history of DPI, the early years of struggle to form an organization, and its goals and objectives.
One of the particularly redeeming features of this book is that it frankly voices the difficulties faced by an organization that claims to represent people with disabilities internationally. It lists the power politics among the "old boys" in the group, the elitism that often develops in leadership and the omission of people who are not powerful and who may have a voice in decision making. Of particular importance was the issue of people with disabilities in developing countries whose extreme poverty and lack of resources often prevented them from participating in DPI sponsored events. Also mentioned are difficulties, political and otherwise, that affect an organization of international dimensions.
This book has inherent value in that it attempts a realistic portrayal of a self-advocacy organization, including the challenges and struggles. It also very effectively places the field of disability in the context of a social movement that can effect social change in the field of today.
TITLE: New voices: Self-advocacy by people with disabilities
AUTHORS: Dybwad, G., & Bersani, H., Jr. (Eds.)
PUBLICATION INFORMATION: 1996
"Self-advocacy by people with developmental disabilities was unthinkable three decades ago." This thinking changed when in the 1970s people with developmental disabilities started coming together to advocate for themselves. They began to organize themselves into groups to speak out and to organize themselves to fight against their experiences of social inequality. This book holds a collection of original papers, by self-advocates themselves, illustrating their movement. Papers come from self-advocates in Canada, England, the United States, Denmark, New Zealand, and Australia.
TITLE: How to be an effective board member: Manual for self-advocates and How to be an effective board member: Manual for facilitators
AUTHORS: Eddy, B. A., Cohen, G. J., & Rinck, C.
PUBLICATION INFORMATION: 1989, December
TITLE: We are People First: Our handicaps are secondary
AUTHOR: Edwards, J. P.
PUBLICATION INFORMATION: 1982
"People First" was started on January 8, 1974. Since then it has grown into a movement that has effectively articulated the needs of its members who are self-advocates. The organization thus affords a chance to members to practice self-advocacy and self-assertion skills. A section of the book describes the early years, the difficulties, the conventions that were organized and the slow but steady growth of the organization into one of international dimensions. Some of the themes deemed important were the appreciation of help, the need and value for friends, pride in one's accomplishments and the negative effects of labeling. A section also describes how the members consider the role of the helper, an issue that today's self-advocates and professionals continue to struggle with.
This book makes fascinating reading. It describes how individuals who were formerly dismissed as nobodies and interred in institutions have managed to fight back and articulate a strong message. Behind the obscuring handicap is a person with dynamism and a vision to effect change.
TITLE: The self-advocacy workbook
AUTHOR: Gardner, N. E. S.
PUBLICATION INFORMATION: 1980
TITLE: IMPACT: Feature issue on self-advocacy
AUTHORS: Hayden, M. F., & Shoultz, B. (Eds.)
PUBLICATION INFORMATION: 1990/91
This bulletin contains numerous articles by self-advocates and supporters, who describe and discuss self-advocacy. Articles give information on a history of self-advocacy, starting local self-advocacy groups, self-advocates and the legislature, issues of choice, and information for self-advocates on boards and committees. The bulletin includes annotations of a number of self-advocacy resources.
TITLE: IMPACT: Feature issue on self-advocacy
AUTHORS: Hayden, M. F., & Ward, N. (Eds.)
PUBLICATION INFORMATION: 1994
This issue of IMPACT focuses on the growing self-advocacy movement and the issues it is raising. Articles written by self-advocates and supporters describe the history of the national self-advocacy movement, self-advocacy and systems change, supporting self-advocates with information, and self-advocates and advocates working together for change. This bulletin includes brief annotations of a number of video and print resources.
TITLE: The beliefs, values, and principles of self-advocacy
AUTHOR: Inclusion International
PUBLICATION INFORMATION: 1996
Inclusion International (formerly The International League of Societies for Persons with Mental Handicap) held it first meeting of its committee on self-advocacy in June of 1993. This booklet was prepared by the committee members, with the help of their support persons, at this meeting. The booklet describes the beliefs and values (e.g., "being a person first") and the principles (e.g., "empowerment" and "equal opportunity") of the committee in a manner that can be understood by all. Also included in the booklet are descriptions of self-advocacy itself, support, the role of the support person, empowerment, and institutions. A final section is composed of interesting stories of "good practice from throughout the world."
TITLE: Effective self advocacy--Empowering people with disabilities to speak for themselves
AUTHOR: Institute on Community Integration
PUBLICATION INFORMATION: 1990
This report is a record of discussions during the workshop, "Assisting People with Developmental Disabilities to Speak Effectively for Themselves," held in 1990, at the 114th Annual Conference of the American Association on Mental Retardation. Specifically, the report contains comments made by the workshop participants when sharing their experiences with regard to three main questions. Namely, "what works to help people speak for themselves to change their own lives," "what works to help people speak out to change conditions for all people with disabilities," and "what will strengthen self-advocacy."
TITLE: Self-determination and trust: My experiences and thoughts
AUTHOR: Kennedy, M. J.
PUBLICATION INFORMATION: 1996
TITLE: Count us in: Growing up with Down syndrome
AUTHORS: Kingsley, J., & Levitz, M.
PUBLICATION INFORMATION: 1994
TITLE: The self-advocacy movement by people with developmental disabilities:
A demographic study and directory of self-advocacy groups in the United
States
AUTHOR: Longhurst, N.A.
PUBLICATION INFORMATION: 1994
American Association on Mental Retardation
TITLE: Changing ourselves and our community: Report of a leadership development process with a self-help group in mental health
AUTHOR: Lord, J.
PUBLICATION INFORMATION: 1983
and
Centre for Research and Education
The report deals with the purpose of having self-help groups and the importance of creating a context where members can gain skills and knowledge and expand people's awareness of values, strategies and processes which would be helpful in impacting on mental health issues. There are also sessions included where members can be involved in planning and implementation through role playing, sharing and examining individual needs. Further, this book explores the process of change in the group and in the community in terms of identifying issues that need resolving and utilizing problem solving skills to address these issues.
TITLE: Lives in transition: The process of personal empowerment
AUTHOR: Lord, J.
PUBLICATION INFORMATION: 1991
TITLE: Making a move: Advice from People First members about helping people move out of institutions and nursing homes
AUTHORS: Lyle, O'Brien, C., & O'Brien, J.
PUBLICATION INFORMATION: 1990
"In 1990 almost 800 [were to] begin moving from state institutions and nursing homes into community living arrangements like intensive tenant support, tenant support, adult family homes, and group homes." In March of this same year the authors of this paper met with members of People First Chapters of Pierce and Thurston Counties to facilitate a workshop on how People First members could help the people who were leaving the institutions and nursing homes. This monograph is a summary, in their own words, of the advice that self-advocates have for those being moved. Included are the thoughts of People First members on questions such as: "why do you want me to move," "what will my parents think," "what about the people I am leaving behind," "will the place I am moving to be all right for me and if not what can I do about this," "what about money," "what will I do during the day," "how will I learn what I need to, to look out for myself," and "will I still get help as long as I need to?" Following the discussion of these questions, a list of nine ways in which People First could help those leaving institutions and nursing homes were decided upon, including the reaching out of People First to these individuals.
TITLE: Whatever you decide
AUTHOR: Mohr, J.
PUBLICATION INFORMATION: 1983
The book first addresses the issue of the importance of teaching decision making skills. It also offers suggestions for forming groups, and various ways of improving group dynamics. Suggestions on how to choose an advocate and lead group discussions are also offered. A number of sample lessons pertaining to each topic are offered. This proves a good book for both advocates and self-advocates in the field.
TITLE: What do members want from People First?
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1991
Based on the premise that People First leaders will better serve People First members if they know what these members want from the group, in May of 1991 the authors led a workshop with 50 Washington members to discuss the wants of members. This monograph is a summary of the wants of members from the group itself and from its leaders. Discussions that took place during the workshop centered around topics such as: reasons for which people join People First, problems being faced by the group and in the personal lives of its members, addressing of members' concerns by People First, ways in which branches can help local chapters, and questions that members can ask their People First chapter.
TITLE: Surviving in the system: Mental retardation and the retarding environment
AUTHOR: People First of California
PUBLICATION INFORMATION: 1984
This report is a result of work for that contract. The first section discusses results of the unmet needs assessment. Part 2 describes a self-advocacy organization and training model. The report concludes with a section containing a summary of recommendations on a broad range of issues for the service system: the state hospital system, community-based services, services to families, vocational assessment and job training and support, self-interests of consumers, and organizing and training for self-advocacy.
TITLE: A chance to be made whole: People First members being friends to tear down institution walls
AUTHORS: People First of Tennessee & O'Brien, J.
PUBLICATION INFORMATION: 1997
This monograph describes the efforts of People First of Tennessee to assist people who live in institutions. Because they fought in court for people in institutions, the state has agreed that people will now get the services they need in their communities. One of the ways they assisted was by acting as what lawyers call "next friends" for people in institutions. A "next friend" is somebody who gets a U.S. Federal Judge's attention for people who need the Judge to protect their rights but cannot speak for themselves and have no family willing or able to speak up for them. This manual includes many specific strategies they used as "next friends," as well as many reflections on the barriers that institutions create and ways of breaking through those barriers.
TITLE: Speaking up and speaking out: An international self-advocacy movement
AUTHORS: People First of Washington & Self-Advocacy Project, Rehabilitation Research and Training Center, University of Oregon
PUBLICATION INFORMATION: 1985
The format of the booklet covers the planning and events of an international self-advocacy conference which was held by a group called People First (of Washington State). This group shares their experiences with words and pictures, providing a knowledge base for future self-advocates. Included throughout the volume are personal excerpts on people's thoughts and activities. The chapters cover basic issues such as describing self-advocacy, starting and supporting a local group, expectations about advisors, learning about self-advocacy, evaluating services, starting and supporting a state/province-wide organization, and other critical issues. An excellent resource.
TITLE: Self-determination
AUTHOR: Perske, R. (Ed.)
PUBLICATION INFORMATION: 1989
This is a summary of the proceedings of a national conference on self-determination to which sixty people were invited by the Office of Special Education and Rehabilitative Services, U.S. Department of Education. Over half the planners have disabilities of one kind or another. This was a first: people with disabilities, parents, and close supporters being asked to draft specific recommendations for federal officials regarding future directions for people with disabilities. This booklet presents their recommendations, some viewpoints of people at the meeting, and each of the keynote presentations.
TITLE: How we lived and grew together: An interstate seminar on self-advocacy for persons with developmental disabilities
AUTHORS: Perske, R., & Williams, R.
PUBLICATION INFORMATION: 1984
TITLE: Self-determination across the life span
AUTHORS: Sands, D. J., & Wehmeyer, M. L. (Eds.)
PUBLICATION INFORMATION: 1996
This volume provides comprehensive discussion of issues related to self-determination. The editors begin with a discussion of the complexities of what is meant by self-determination. They state, "There exists a mistaken belief on the part of some that by promoting self-determination we are, in fact, elevating individual needs and goals over the needs and goals of a collective family or community. A second misinterpretation is the self-determination means absolute control by the individual." This book contains 15 chapters, written by adults with disabilities, parents of children with disabilities, and professionals, addressing self-determination. Chapters in Section I focus on definitional, theoretical, and policy issues, while chapters in Section II contain information and resources oriented toward practitioners.
TITLE: Open the doors - The nuts and bolts of building supports for each other
AUTHOR: Self Advocates Becoming Empowered
PUBLICATION INFORMATION: 1996
TITLE: Self Advocates Becoming Empowered: The birth of a national
organization in the U.S.
AUTHORS: Shoultz, B., & Ward, N.
PUBLICATION INFORMATION: 1996
TITLE: People with developmental disabilities speak out on quality of life: A statewide agenda for enhancing the quality of life of people with disabilities
AUTHORS: Vivona, V., & Kaplan, D.
PUBLICATION INFORMATION: 1990, March
TITLE: People First of Nebraska: 8 years of accomplishments
AUTHORS: Ward, N., & Shoultz, B.
PUBLICATION INFORMATION: 1996
TITLE: We can speak for ourselves: Self-advocacy for mentally handicapped people
AUTHORS: Williams, P., & Shoultz, B.
PUBLICATION INFORMATION: 1984
The fundamental right of speaking for oneself has long been denied to mentally handicapped people, who have usually had decisions made for them about every detail of their lives. They have, in other words, been taught dependence. In recent years, however, the self-advocacy movement has been proving that people who can learn dependence can also learn independence. This book tells the story of People First of Oregon, Project 2 of Nebraska, and similar projects in England where participants have been building the skills necessary to take charge of their own lives. The book offers practical advice and support for parents, human service workers, and others interested in developing self-advocacy for mentally handicapped people. It includes detailed models of existing projects, lists teaching materials, and presents personal accounts by mentally handicapped participants in self-advocacy projects both in the United States and in England. This book is also a valuable resource to sensitize the direct service worker, the administrator, and the public official to the importance of self-advocacy.
TITLE: People first: Leadership and training manual
AUTHOR: Worrell, B.
PUBLICATION INFORMATION: 1988
Of the many books and chapters on advocacy, we concentrate here on materials that can be used by and on behalf of people with all types of disabilities. These materials include personal stories, "nuts and bolts" suggestions, as well as in-depth examinations of laws, governmental programs, and needed improvements.
TITLE: Principles of whistleblowing
AUTHORS: Biklen, D., & Baker, M.
PUBLICATION INFORMATION: 1979
This article 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.
TITLE: Rights and reality: An action guide to the rights of people with disabilities in Wisconsin
AUTHORS: Breedlove, L., Franz, J., Froemming, R., Greenley, D., & Marker, J.
PUBLICATION INFORMATION: 1986
This manual is based on the three values concepts of maximizing independence, consumerism and the consumer movement, and the normalization principle. It includes chapters on SSI, Medical Assistance, Medicare, Chapter 51, Protective Services, Civil Commitment, Guardianship, Section 504, Rights in Institutions, Vocational Rehabilitation, the Child Welfare System, and several Wisconsin programs of interest to advocates of individualization.
Although the federal entries may be useful to people from other states, this manual is written from Wisconsin's state law perspective. It is a comprehensive and clearly written assessment of their resources and practices, and useful to anyone wishing to understand better some of the innovative Wisconsin programs and structures.
TITLE: The criminal justice system and mental retardation: Defendants and victims
AUTHORS: Conley, R. W., Luckasson, R., & Bouthilet, G.N. (Eds.)
PUBLICATION INFORMATION: 1992
This book provides valuable information for advocates, service providers, and legal representatives regarding people with mental retardation and the criminal justice system. Chapter authors, including authorities in legal representation and service provision, offer discussion of the complex issues surrounding people with mental retardation and the criminal justice system, including: recognizing and preventing victimization, providing competent legal representation, determining criminal responsibility, educating for early prevention of criminal activity, assessing competence to stand trial, and designing appropriate (re)habilitation programs.
TITLE: Unraveling the special education maze: An action guide for parents
AUTHOR: Cutler, B. C.
PUBLICATION INFORMATION: 1981
In addition though, and perhaps more important, this book speaks to the issue of parent attitudes in a manner few other works have come close to accomplishing. Cutler describes how parents feel when they approach schools. She gives us an accounting of "good" and "not so good" ways in which school personnel treat families. This is a book filled with humor, commitment, and lots of food for consciousness raising. This book will be particularly popular with parents and, I suspect, with administrators as well. It has a lot to teach us all.
TITLE: How to organize an effective parent/advocacy group and move bureaucracies and How to get services by being assertive
AUTHOR: Des Jardins, C.
PUBLICATION INFORMATION: 1980
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 women who are relatively inexperienced in speaking out for what they believe.
TITLE: The Americans with Disabilities Act: A guide for people with disabilities, their families, and advocates
AUTHORS: Goldberg, D., & Goldberg, M.
PUBLICATION INFORMATION: 1993
TITLE: Disability rights guide
AUTHOR: Goldman, C. D.
PUBLICATION INFORMATION: 1987
Also included are three appendixes: Appendix I: State by State Guide: Laws & Contacts; Appendix II: Federal Contacts; and Appendix III: A.I.D.S.
TITLE: Implementing the Americans with Disabilities Act: Rights and responsibilities of all Americans
AUTHORS: Gostin, L. O., & Beyer, H. A. (Eds.)
PUBLICATION INFORMATION: 1993
Written by law and disability experts--many of whom were instrumental in constructing the ADA--this book is an excellent resource. Chapters in the first section cover the history and legal framework that formed the bases of the ADA. The second section describes key provisions of the ADA. Finally, the third section discusses related issues, such as health care, genetic discrimination, mental and psychiatric disorders and the ADA, the ADA in international perspective, and a personal perspective on disability policy.
TITLE: ACTION: A manual to help you organize
AUTHOR: Governor's Planning Council on Developmental Disabilities
PUBLICATION INFORMATION: 1989
Copies are available free of charge by contacting the above address.
TITLE: Rights and advocacy for retarded people
AUTHOR: Herr, S. S.
PUBLICATION INFORMATION: 1983
It examines the legal frameworks that perpetuated the residential segregation of people with mental retardation. It considers to what extent lawmakers can undo this history of segregation and delineates the legal directions and safeguards that offer a brighter future. Changes in due process now give clients and their representatives the right to object to care and treatment received. Though the rights to care, habilitation, and education exist, the means of their delivery are inchoate. This is why legal advocates must continue to gain support for their complex agenda: diligent monitoring of resettlement efforts, a wide range of choices of living arrangements and services of intimate scale and high quality, and more comprehensive legal reform.
The author strongly speaks out in favor of the advocacy movement for those who are too young, too incapacitated or too vulnerable to act alone. He defines and discusses the many types of advocacy that are available to assure these individuals' rights.
TITLE: Organizing--A guide for grassroots leaders
AUTHOR: Kahn, S.
PUBLICATION INFORMATION: 1982
This reference tool is valuable to both individuals who want to start a new group and leaders of established organizations.
TITLE: Training exercises for human rights committee volunteers
AUTHORS: Laski, F., & Piccoli, M.
PUBLICATION INFORMATION: 1984
A human rights committee generally oversees the behavior management and medication programs of an agency. In this role, it is a watchdog that monitors agency practices and ensures individuals' rights.
This manual discusses some specific issues of individual rights that surfaced during their brainstorming session. After a discussion of Behavior Modification and Policy issues, there are exercises in medications policy and individual complaint hearings.
Although this is geared toward people of some experience, there is a wealth of information presented in a clearly organized structure. It provides an understanding of the role and activities of human rights committees. Also included are various copies of letter styles, and reports and forms used in records of individuals.
TITLE: Toward independence: An assessment of federal laws and programs affecting persons with disabilities--with legislative recommendations
AUTHOR: National Council on the Handicapped
PUBLICATION INFORMATION: 1986
Contained within this report are some very revealing statistics about the ten major topic areas isolated for assessment. These topic areas are: Equal Opportunity Laws, Employment, Disincentives to Work Under Social Security Laws, Prevention of Disabilities, Transportation, Community-Based Services for Independent Living, Housing, Educating Children with Disabilities, Coordination, and Personal Assistance: Attendant Services, Readers, Interpreters. The major conclusions and legislative recommendations of the Council regarding these areas are included in this report.
TITLE: Mental disabilities and Americans with Disabilities Act: A practitioner's guide to employment, insurance, treatment, public access, and housing
AUTHOR: Parry, J. (Ed.)
PUBLICATION INFORMATION: 1994
TITLE: Deadly innocence?
AUTHOR: Perske, R.
PUBLICATION INFORMATION: 1995
TITLE: Unequal justice?: What can happen when persons with retardation or other developmental disabilities encounter the criminal justice system
AUTHOR: Perske, R.
PUBLICATION INFORMATION: 1991
TITLE: Negotiation: A tool for change
AUTHOR: Taylor, S. J.
PUBLICATION INFORMATION: 1979
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.
TITLE: The ADA mandate for social change
AUTHOR: Wehman, P. (Ed.)
PUBLICATION INFORMATION: 1993
The Americans with Disabilities Act (ADA) is generally cited as the most important advancement in the history of disability rights. Acknowledging that persons with disabilities--43 million Americans--have, and continue to, experience discrimination in areas such as employment, housing, and public accommodations, the purpose of the ADA is both to prevent and to begin to ameliorate discrimination against such persons. Yet, when the full impact of the ADA is felt, "how will society be affected and how will it respond?"
This edited book addresses these very questions through analyses of the ADA and offerings of valuable insights for more complete understandings of societal implications of the legislation. Discussed issues include: redefining equality through the ADA, quality of life and consumer choice, employment--both supported and open, and reasonable accommodation.
TITLE: Citizen advocacy and protective services for the impaired and handicapped
AUTHORS: Wolfensberger, W., & Zauha, H. (Eds.)
PUBLICATION INFORMATION: 1973
TITLE: CAPE: Standards for citizen advocacy program evaluation
AUTHORS: O'Brien, J., & Wolfensberger, W.
PUBLICATION INFORMATION: 1980
TITLE: Learning from citizen advocacy programs
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1987
As a concept put into practice, citizen advocacy (CA), formulated by Dr. Wolf Wolfensberger, was part of a larger schema that delineated advocacy and protective services needed by people with mental retardation. These services were designed to provide the necessary protection for handicapped individuals who were unable to represent themselves and had no family or friends to safeguard their interests. CA was an attempt to respond to the parents' question, "What will happen to my disabled son or daughter when I'm gone?" Wolfensberger defined CA as "...a mature, competent citizen volunteer representing, as if they were his own, the interests of another citizen who is impaired in his instrumental competency, or who has major expressive needs which are unmet and which are likely to remain unmet without special intervention" (Wolfensberger & Zauha, 1983).
CAPE (O'Brien & Wolfensberger, 1980) is an evaluation tool designed to compare the practices found in a CA program to the standards set by the definition and principles of citizen advocacy. CAPE is made up of 36 ratings which examine the
efforts of the staff and board to recruit and introduce people who require protection, practical assistance, and/or friendship (proteges, partners) to capable citizens who attempt to address those needs (advocates).
O'Brien's manual (1987) provides an expanded definition and rearticulates the principles of CA. This manual reflects the experiences of people in the United States, Canada, England, and Australia trying to put Wolfensberger's theory into practice. Learning from citizen advocacy programs is a collection of questions, activities, and resources about CA. While external evaluation teams may use the manual (O'Brien suggests the possibility of doing so in conjunction with the CAPE tool), boards and staff of CA offices may also use it to review their own work.
Despite the different purposes of these publications, all of the authors assume that at least some typical citizens will choose to become involved in a personal, one-to-one relationship with someone who is devalued by the society at large. Those interested in the concept of citizen advocacy are encouraged to read all three of these publications.
TITLE: You've got a friend
AUTHOR: Worth, P.
PUBLICATION INFORMATION:
The G. Allan Roeher Institute
Over the past 40 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 about families have "caught up" with where so many families have always been. The books reviewed in this section are positive about and helpful to families who have one or more family members with disabilities.
TITLE: Life as we know it: A father, a family, and an exceptional child
AUTHOR: Bérubé, M.
PUBLICATION INFORMATION: 1996
TITLE: A difference in the family: Life with a disabled child
AUTHOR: Featherstone, H.
PUBLICATION INFORMATION: 1980
Available from:
The book uses three sources of information: the author's own experience, personal interviews conducted by the author with other families, and a well-researched body of literature written by parents on their experiences. Chapters deal individually with fear, anger, loneliness, guilt and self-doubt, and acceptance, as the book describes the emotional stages the family goes through as it learns to live with a disabled child. Other concerns are marital stress, siblings, and giving and getting help. A particularly useful resource for professionals working with families, the book provides an insightful analysis into the many ways the presence of a child with disabilities changes the structure of the family.
TITLE: The power of positive linking: How families can empower people who have a mental handicap through mutual support groups
AUTHOR: The G. Allan Roeher Institute
PUBLICATION INFORMATION: 1989
While the title suggests otherwise, this study really explores the empowerment of the families through the mutual support groups.
TITLE: Meeting the challenge of disability or chronic illness - A family guide
AUTHORS: Goldfarb, L. A., Brotherson, M. J., Summers, J. A., & Turnbull, A. P.
PUBLICATION INFORMATION: 1986
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.
TITLE: Couples with intellectual disabilities talk about living and loving
AUTHOR: Melberg Schwier, K.
PUBLICATION INFORMATION: 1994
TITLE: As up we grew with Barbara
AUTHOR: Moise, L. E.
PUBLICATION INFORMATION: 1980
TITLE: Letting go, moving on: A parent's thoughts
AUTHOR: Moore, C.
PUBLICATION INFORMATION: 1993
TITLE: More than what they bargained for: The meaning of support to families
AUTHOR: O'Connor, S.
PUBLICATION INFORMATION: 1995
TITLE: We're all one family: The positive construction of people with disabilities by family members
AUTHOR: O'Connor, S.
PUBLICATION INFORMATION: 1995
TITLE: Hope for the families: New directions for parents of persons with retardation or other disabilities
AUTHOR: Perske, R. (Illustrated by M. Perske)
PUBLICATION INFORMATION: 1981
TITLE: Parent to parent
AUTHOR: Pizzo, P.
PUBLICATION INFORMATION: 1983
TITLE: Yes! She knows she's here
AUTHOR: Schaefer, N.
PUBLICATION INFORMATION: 1997
TITLE: After the tears: Parents talk about raising a child with a disability
AUTHOR: Simons, R.
PUBLICATION INFORMATION: 1987
The book is very readable, being slim with short chapters that contain extensive quotes by parents. It legitimizes as being normal the strong emotions of anger and guilt that parents may experience. It accepts that some of the consequences of having a disabled child may have to do with the awkwardness of dealing with marital stress, relatives, siblings, professionals, and worries about the future. But unlike most other books, this book goes beyond and offers solutions arrived at by parents themselves for those situations most commonly encountered (for examples, architectural barriers, the school system, curious strangers) while recognizing the fact that solutions are not universally applicable and would, of necessity, differ according to the circumstances of each family.
Each chapter closes with simple and practical suggestions and strategies. The last chapter lists some resources on information and referral services, health care, legal aid, advocacy, books, publications, directories and films.
TITLE: Making changes: Family voices on living with disabilities
AUTHORS: Spiegle, J. A., & van den Pol, R. A.
PUBLICATION INFORMATION: 1993
Parents, siblings, and relatives are often ignored in studies of families who have a member with a disability. Making changes give a voice to all members of these families--parents, siblings, and the child with a disability. Spiegle compliments the stories of other families with her own stories of loosing a friend and classmate to a special education class, the daughter of a family friend being institutionalized, and the birth of her daughter Sara--who has Down syndrome. Included are excerpts from Spiegle's diary, in which she talks of both the joys and frustrations of caring for Sara; letters from a close friend--who also has a child with a disability--to Spiegle over a 6- year span; and stories on issues such as, possibilities, diagnosis, acceptance, medication, out-of-home placement and respite care, health care providers, teachers, and provider versus consumer perspectives.
TITLE: Families, professionals, and exceptionality: A special partnership (2nd ed.)
AUTHORS: Turnbull, A. P., & Turnbull, H. R.
PUBLICATION INFORMATION: 1990
or
Merrill Publishing Co.
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.
TITLE: Parents speak out: Then and now
AUTHORS: Turnbull, H. R., & Turnbull, A. P. (Eds.).
PUBLICATION INFORMATION: 1985
TITLE: Disability and the family: A guide to decisions for adulthood
AUTHORS: Turnbull, H. R., Turnbull, A. P., Bronicki, G. J., Summers, J. A., & Roeder-Gordon, C.
PUBLICATION INFORMATION: 1989
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 their family member's needs.
Almost all people need to feel that they belong and have meaningful relationships with others. Unfortunately, much of the literature reflects a belief that communities and the people in them are unable and unwilling to welcome people with developmental disabilities into their midst. There are studies on loneliness and isolation, courses on the sociology of deviance, and workshops and books on ways of overcoming community resistance.
The materials in this section reflect a more positive way of thinking. They look at accepting relationships and responsive communities, and examine some of the dynamics that underlie these phenomena. They propose changes, not just in "the community," but in ourselves. In what ways have we--service providers, professionals, advocates--created the barriers we talk about? How can we best promote and support caring relationships and community participation? These materials attempt to address these issues at several levels.
TITLE: Enhancing the social inclusion of persons with developmental disabilities
AUTHORS: Abery, B. H., & Fahnestock, M.
PUBLICATION INFORMATION: 1994
TITLE: Friendships and community connections between people with and without developmental disabilities
AUTHOR: Amado, A.N. (Ed.)
PUBLICATION INFORMATION: 1993
This book contains chapters that discuss a wide variety of critical issues related to friendship and people with developmental disabilities. It is acknowledged that "supporting friendships can be fragile, delicate, magical, and sensitive work. It is not work that easily fits into formalized systems and agency patterns" (p. 373). Authors discuss dilemmas and challenges related to this.
The book is divided into three sections: (1) dimensions of friendships, (2) stories of friendships and (3) strategies for building friendships. Chapters in the first section include an introductory piece by John O'Brien and Connie Lyle O'Brien discussing dimension of friendship, issues of attraction and power, and context of community; loneliness; intimacy and sexual relationships; the gendered context of friendships; and friendships between "staff" and "clients." The second section contains stories of friendship written by people with disabilities, parents, and advocates from within and outside of the service system. Finally, chapters in the third section offer important strategies based upon focused efforts to assist people to form friendships and connections at work, in community associations, and within the community at large.
TITLE: Amistad: Stories of Hispanic children with disabilities and their friendships
AUTHOR: Beach Center on Families and Disability
PUBLICATION INFORMATION: 1997
TITLE: The social basis of community care
AUTHOR: Bulmer, M.
PUBLICATION INFORMATION: 1987
TITLE: Interdependence: The route to community
AUTHOR: Condeluci, A.
PUBLICATION INFORMATION: 1991
The book begins with a discussion of disempowerment--the ways people lose power and are oppressed and stereotyped. This discussion concludes with some lessons about change from the civil rights movement. Chapter 2 describes various paradigms within human services, including the medical, educational, economic, and maintenance paradigms. The next chapter outlines an alternative paradigm--the interdependence paradigm. In summary, the three goals of this paradigm are acceptance, relationships, and opportunity. Chapter 4 details four factors that are key to achieving interdependence: role competency enhancement, supplemental supports, relationship building, and systems advocacy. The fifth chapter focuses on "understanding community." It describes various functions of community, formal and informal dimensions of community, community space issues, communication issues, and learning about community issues.
TITLE: It's about relationships
AUTHOR: Forest, M.
PUBLICATION INFORMATION: 1989
TITLE: Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard
AUTHOR: Groce, N. E.
PUBLICATION INFORMATION: 1985
This well-researched book is a must, not only for people interested in the field of disabilities but for anyone trying to struggle with integration into community life. The book is a simple thesis offering a profound message in a wide array of disciplines. It will add thought to issues that will remain unresolved and discussed for a long time to come.
TITLE: Friends: A manual for connecting persons with disabilities and community members
AUTHOR: Human Services Research and Development Center
PUBLICATION INFORMATION:
Sections of the manual contain information on: planning with people; strategies to facilitate connections; introducing people; providing continuing support for relationships and friendships; assisting others in meeting and becoming friends with persons with disabilities; and agency support for relationship building. It describes the process used in the Friends project, strategies that seemed to be more and less effective, and it contains many stories and examples.
The manual would be useful for anyone who is interested in supporting a person with disabilities to widen his or her circle of relationships and to develop deeper friendships.
TITLE: Building communities from the inside out: A path toward finding and mobilizing a community's assets
AUTHORS: Kretzmann, J. P., & McKnight, J. L.
PUBLICATION INFORMATION: 1993
Chapter 1, "Releasing Individual Capacities," introduces ways to find and use the gifts and talents of local people. Chapter 2, "Releasing the Power of Local Associations and Organizations," describes the efforts of community associations to solve local problems. Chapter 3, "Capturing Local Institutions for Community Building," provides examples of ways in which local institutions (e.g., parks, libraries, schools, colleges) form community partnerships with each other. Chapter 4, "Rebuilding the Community Economy," highlights ways in which communities can capture and build upon existing economic assets. Chapter 5, "Asset-Based Community Development: Mobilizing an Entire Community," summarizes the community-building process presented in this book. Finally, Chapter 6, "Providing Support for Asset-Based Development: Policies and Guidelines," suggests ways in which people and institutions from outside the community can support asset-based community-building activity.
TITLE: Creating responsive communities: Reflections on a process of social change
AUTHOR: Lord, J.
PUBLICATION INFORMATION: 1985
The report focuses not only on lessons related to the emerging vision and strategies this organization used in promoting a sense of community, but also on some of the problems they encountered. A strong family and community emphasis is clear throughout the book, as well as the strength of advocacy in creating such environments. Self-advocacy is mentioned, also, but to a lesser degree. While much of the book deals with the historical development of the province's approach, some interesting and currently relevant principles are set forth in a chapter on assistance to individuals and families.
TITLE: Affectionate bonds: What we can learn by listening to friends
AUTHOR: Lutfiyya, Z. M.
PUBLICATION INFORMATION: 1990
In this monograph, Zana Lutfiyya describes a qualitative study conducted with four pairs of friends in the Syracuse area. In each of these pairs, one person has a disability label and one does not. The author offers perspectives on friendship found in the literature, describes each of her informants and their friendships, explores the dimensions and characteristics of friendship, and relates the rights, responsibilities and obligations of friendship in her informants' eyes. She discusses how some friendships move toward greater intimacy while others stay the same or die away, and lays out some of the implications of her study for the human service world, for families, and for people thinking about their own friendships. This ground-breaking study should begin to focus our thinking on what really goes on in friendships, including those between people with and without disabilities.
TITLE: What are we learning about bridge-building?
AUTHORS: Mount, B., Beeman, P., & Ducharme, G.
PUBLICATION INFORMATION: 1988
As the sub-title of the monograph suggests, it is a summary of a dialogue between people who are trying to build community for people with disabilities by working as bridge-builders. Most of the monograph presents the reflections of five participants at a day-long discussion on bridge-building in 1988. As this publication appears to be a faithful rendering of people's words, with little attempt at a full written explication of the concepts and terms that form the new language of bridge-building, it may be unsatisfying for someone who is completely new to the idea. However, it does contrast the different perspectives held by proponents of traditional human services with that of bridge-building, and would be of interest to those readers already acquainted with this concept.
TITLE: What are we learning about circles of support?
AUTHORS: Mount, B., Beeman, P., & Ducharme, G.
PUBLICATION INFORMATION: 1988
Acknowledging the current fascination with "personal futures planning," the authors provide an important comparison of support circles with person-centered and traditional methods of service planning. And they wisely caution that the process outlined in the monograph is not meant as a model for replication of other support circles. Rather, "the spirit of a circle...is more important than the details of the process, and we hope that the process we describe will help people invite the spirit of support into the lives of other people" (p. 1).
TITLE: Nasty girls, thugs, and humans like us: Social relations between severely disabled and nondisabled students in high school
AUTHOR: Murray-Seegert, C.
PUBLICATION INFORMATION: 1989
Based on a qualitative research study, this book is the account of one school's move toward integration, and the peer relations that developed in that school as a result. The author documents the ways in which the school's integration efforts affected student relations and teacher practices. In addition, she relates these findings to the broader themes of quality education, student diversity, and social inequity.
TITLE: Natural supports in school, at work, and in the community for people with severe disabilities
AUTHOR: Nisbet, J. (Ed.)
PUBLICATION INFORMATION: 1992
Promoting the position that assistance must be defined by the needs of individuals rather than the requirements of service systems, this volume includes research and first-person accounts related to use of natural supports. Chapters discuss natural supports in relation to: family issues, school, work, residential supports, social support and friendship, among others. Chapters include practice strategies, stories, and reflection on key issues related to developing and sustaining natural support networks.
TITLE: Designing policies in support of inclusive community: Making questions for decision makers
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1989
"People in association create neighborhoods, schools, workplaces, marketplaces, and civic organizations. They build inclusive community when their activity calls on, strengthens, and celebrates mutual capacity to welcome, join with, and care for people who have been left out." But, on the other hand as O'Brien tells us, when activities exclude and isolate people, community is diminished. Based on discussion sponsored with the Connecticut Developmental Disabilities Council, O'Brien poses a series of poignant questions to human service and government decision makers. Examples of these questions are: "How can we decrease disincentives to participate in community life?" "How can we insure sufficient cash incomes for people with disabilities?" and "How can we invest in activities that build inclusive communities?"
TITLE: Signs of community building
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1989
Based on notes he made while visiting with people involved in community building activities in Phoenixville, PA, in this monograph O'Brien discusses the signs of community building that he saw during his visit: "I was struck by the characteristics that these diverse efforts have in common despite their independent origin and their lack of coordination mechanism." He also suggests that community building touches fundamental everyday concerns, including, "to be healthy and to die well," "to have a safe place in times of confusion," and "to reach out to people in other places."
TITLE: Unlikely alliances: Friendships and people with developmental disabilities
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1993
TITLE: Members of each other: Perspectives on social support for people with severe disabilities
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1992
TITLE: Unfolding capacity: People with disabilities and their allies building better communities together
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1994
This paper discusses efforts to build community, based on what the authors have learned by listening to stories of people who have worked together to make important changes in their lives. These changes, all involving people with significant disabilities, include such things as: establishing adequate support for family life; moving from an institution, medical hospital, nursing home, or group residence into one's own home; moving from one's family's home to a home of one's own; getting a job in an ordinary community workplace; and attending school as a member of ordinary classes.
As the authors' see it, "community building happens when people step outside the roles prescribed by the formal and informal administrative structures and the assumptions that typically organize life for people with substantial disabilities" (p. 6). They describe five commitments that contribute to building community: anchor, allies, assistance, agendas, and associations. Each is discussed briefly. The paper concludes by addressing issues related to the importance of community building and tensions in community building.
TITLE: The gift of hospitality: Opening the doors of community life to people with disabilities
AUTHOR: O'Connell, M.
PUBLICATION INFORMATION: 1988
By sharing the experiences of individuals with disabilities who have been welcomed into the hearts and lives of others, O'Connell introduces a practical definition of hospitality. She suggests that hospitality is "...the fundamental sense that you have to appeal to in asking other people to get involved in this work of welcoming isolated people back into the community." For the author, achieving the fullest possible integration of individuals with disabilities into society involves acts of welcome and hospitality by those who are already members.
This monograph would be useful reading for those interested in the meanings of "community integration" for people with disabilities.
TITLE: Crossing the river: Creating a conceptual revolution in community & disability
AUTHOR: Schwartz, D. B.
PUBLICATION INFORMATION: 1992
As increasing numbers of people with developmental disabilities have been assisted to live in community-based settings, at the same time, the community services system has failed, in many ways, to help people become participants and members of the community. The conceptual revolution that Schwartz describes involves "rediscovering the importance for all people of being and feeling embedded in a web of personal relationships."
The book begins with two chapters describing efforts to assist people to form community connections (a chapter on connecting people to community associations, by Sharon Gretz; and a chapter on citizen advocacy in Beaver County, Pennsylvania, by A. J. Hildebrand). Following chapters discuss the idea and process of conceptual revolutions, and describe the efforts of the Pennsylvania State Developmental Disabilities Planning Council to foster and support conceptual change. The book concludes with a discussion of issues regarding what keeps people safe, the limitations of community, the role of human services, and the challenges to building community.
TITLE: A story that I heard
AUTHORS: Schwartz, D.B., McKnight, J., & Kendrick, M.
PUBLICATION INFORMATION: 1987
TITLE: Social integration and friendship
AUTHORS: Strully, J. L., & Bartholomew-Lorimer, K.
PUBLICATION INFORMATION: 1988
The authors propose that freely-given friendships between typical and disabled people "...are at the root of developing competent, caring communities for us all." They then present two case studies illustrating how to enable a person with disabilities to develop such friendships and the impact of these relationships for the people involved.
TITLE: Ties and connections
AUTHOR: Tyne, A. (Ed.) et al.
PUBLICATION INFORMATION: 1988
Today, when the disability field is working toward community integration of people with disabilities, it becomes increasingly important to understand some of the broader social relations that are at work in society and that influence community participation. One of these broader forces is gender relations. Society is fundamentally divided by gender lines and it is not unreasonable to assume that this influences the disability field as well as other aspects of society. Concepts like "community care," "informal care," "family care," and "informal supports" have become increasingly popular within the disability field. Despite this, little attention has been devoted to the concept of "community," and the meaning of "care." Caring is usually defined as women's responsibility and women are often seen as the "natural" caregivers of people with disabilities and other dependent groups. But the fact that the responsibility for caring is still ascribed on the basis of gender has not gained much attention, and women's informal caring work has rarely been the center of focus within the disability field.
This section contains a selected review of the literature on women and community care. This literature is largely British and Scandinavian feminist scholarship that has criticized the policy of community care for assuming and depending on the substantial and consistent input of women's unpaid labor in the home. The literature argues that community care policies are based on an outdated understanding of women's roles in modern societies and suggests that if we do not develop new alternatives that are equally sensitive to women's issues as to disability issues, we may face serious dilemmas that could turn out to be damaging for current attempts to pursue community integration for people with disabilities.
TITLE: Ideologies of caring: Rethinking community and collectivism
AUTHOR: Dalley, G.
PUBLICATION INFORMATION: 1988
TITLE: A labour of love: Women, work and caring
AUTHORS: Finch, J., & Groves, D. (Eds.)
PUBLICATION INFORMATION 1983
TITLE: Women and family care: On the gendered nature of caring
AUTHOR: Traustadottir, R.
PUBLICATION INFORMATION: 1988
This paper is based on a qualitative study of families of children with disabilities and the services that provide support to these families. The study challenges the traditional view of families and attempts to explore how stereotypical sex roles influence the caring for a child with a disability within the family. It also examines how traditional ideas and values about the roles of men and women influence the way family support services are provided. The paper provides an analysis of the meaning of care as work (caring for), love (caring about), and as the extended caring role (caring about what happens to people with disabilities in general). The author concludes that the disability field needs to develop a more sensitive perspective on women's issues to further efforts to achieve full community integration of people with disabilities.
TITLE: Policy is personal: Sex, gender and informal care
AUTHOR: Ungerson, C.
PUBLICATION INFORMATION: 1987
The findings of this study are fascinating and help develop our understanding of the complicated nature of family care. For example, in an attempt to explain why a particular individual within the family network becomes a carer, Ungerson demonstrates that not all kinship ties are equal. Instead, there is a hierarchy of kinship obligations and carers are "selected," first and foremost according to dominant normative and gendered rules of kinship. In this ranking of kinship obligations, close female kin, especially daughters, are believed to have greater obligation to provide care than sons, and daughters-in-law are expected to serve as primary caregivers when no daughters are available. Another of Ungerson's interesting findings is that there were significant differences between men and women carers, both in terms of who they cared for, the reasons they gave for providing care, and at what point in their lives they became carers.
Although this book deals with caregivers who are caring for elderly and frail family members, it provides valuable insights that further our understanding of the complicated nature of "family care" for people with disabilities.
TITLE: The meaning and social division of community care
AUTHOR: Walker, A.
PUBLICATION INFORMATION: 1982
TITLE: Women, the "community" and the "family"
AUTHOR: Wilson, E.
PUBLICATION INFORMATION: 1982
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Publications and Resources | 1. Self-Advocacy
Governor's Planning Council on Developmental Disabilities
This easy-to-read resource guide is designed to help persons with disabilities increase their freedom of choice. Some of these areas of choice included in the guide are: consumer-based needs assessment (IPPs), planning for services, evaluation of services, understanding service systems, and self-advocacy. Each section includes how to carry out one of the areas. For example, the section on consumer-based service plans includes a discussion of: how a person can think about what he or she needs, important terms to know and understand when carrying out an individual person plan (IPP), making a list of your strengths, needs, and what you would like to work on in your life, getting ready for an IPP meeting, how to tell if your IPP is working, and so on.
300 Centennial Building
638 Cedar Street
St. Paul, MN 55101
In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities (pp. 335-345). Baltimore: Paul H. Brookes Publishing Co.
Based on discussions at the 1990 People First of Connecticut statewide conference, self-advocates help us to look at some of the important issues that face self-advocates with regard to their rights to make decisions in their own lives over family/guardians' decisions. They also remind us that self-advocates together can "make thunder." This thunder can help them to take on institutionalization, the right to independent living, and to employment.
Capabilities Unlimited
Community Advocacy Press is a free, quarterly newsletter in which "people with disabilities write in their own words." All the articles in the newsletter are written by people with developmental disabilities in order to encourage self-advocates from across the United States to share what is happening in their life. Story topics in the first issue (Winter 1996) included the use of self-advocacy skills at post-secondary school, being listened to, legislative fact sheet, relationships, Operation Close the Doors, resources, and a conventions list.
2495 Erie Avenue
Cincinnati, OH 45208
Campaign for Valued Futures with
What is particularly important about self-advocacy is that it enables the empowerment of individuals who have been always spoken for. This five volume guide does just this very effectively. Each of the five volumes begins with a "How to Use This Book" chapter. In this chapter, the authors encourage the individuals to use the book merely as support to the formation of their self-advocacy group. In this effort, the authors suggest that the books be used based on the group's specific needs and to find answers to their specific problems.
People Who Have Learning Difficulties
12A Maddox Street
London, W1R 9PL
ENGLAND
St. Martin's Press, Inc.
The disability movement appears to be the last of the social movements of the 20th century. At least this is the claim made by Driedger in this book. Based on interviews, reports, letters and documents by those involved in Disabled People's International, Driedger argues that people with disabilities have a distinctive history that cannot be in accordance with viewing them as clients, patients or deviants dealt with by professionals.
175 Fifth Avenue
New York, NY 10010
University of Missouri-Kansas City
These two manuals are valuable additions to the sparse literature on how self-advocates can be effective as board members. The materials in these two manuals can be used to train self-advocates, or can be used directly by self-advocates themselves. The manual for self-advocates contains many drawings and pictures illustrating the text, which describes meetings, rules, board members' rights and duties (e.g. the right to ask for clarification, the right to voice an opinion, the duty to maintain order and sometimes confidentiality, etc.), and presents samples of board orientation materials. While the examples used are based on Kansas City or Missouri services and boards, the manuals would be useful to people in other states.
Institute for Human Development
2220 Holmes, Room 321
Kansas City, MO 64108
Ednick, Inc.
When talking about disability, it would be important to blur the line between the "we's" and the "they's." This book is an effort in this direction. What happens when a group of former institutional residents who are tired of being misrepresented and devalued decide to do something about this? They form a self-advocacy group: People First. We are People First describes the origin of the movement and its philosophy.
Box 3612
Portland, OR 97208
Technical Assistance for Self-Advocacy Project
This is a resource for people with disabilities. It provides a framework for learning about self-advocacy, organizing a group, and undertaking group action to deal with issues of common concern. The materials are specifically geared for use by a group. Each chapter attempts to focus on only one discrete aspect of organizing. Also, the structure of each presentation is the same throughout in order to minimize any problems the group might have with the management of their meetings.
Kansas Center for Mental Retardation and
Human Development UAP
University of Kansas
Lawrence, KS 66045
In D.J. Sands & M.L. Wehmeyer (Eds.), Self-determination across the life
span (pp. 37-50). Baltimore: Paul H. Brookes Publishing Co.
Michael Kennedy, a long-time self-advocate, begins this chapter with a description of his definition of self-determination. "I think it is different for each person...Self-determination for me is knowing that there are resources out there than I can use to educate myself about things that will enhance my growth or independence...I believe that self-determination is a process." Subsequent sections of the chapter discuss issues such as: the importance of trusting relationships; how life changes can support self-determination, and suggestions for creating service systems that support self-determination.
Harcourt Brace Trade Division
Most people would see Jason Kingsley and Mitchell Levitz simply as two young men with a disability. Count us in is based on more than fifty conversations with Jason and Mitchell and it is from these conversations that it became apparent that these two young men are much more than how they would typically be seen. Jason and Mitchell tell us why they wrote the book: to tell the "Successfully Story of Having Down Syndrome." They also tell us who they are; their friendship (both acted on Sesame Street as children); having a disability -- "there's more to it than I expected"; school experiences; having fun; girls and sex; marriage and children; the important people in their lives; their beliefs; traditions, loss, and grief they have experienced; their views on politics and world affairs; becoming independent, also known as "get off my back please!"; and their plans for the future. This book can be aptly summarized by Jason's words: "Give a baby with a disability a chance to grow a full life. To experience a half-full glass instead of half-empty glass. And think of your abilities, not your disabilities."
525 B Street, Suite 1900
San Diego, CA 92101-4495
American Association on Mental Retardation
There are two components in this book: the results of a national demographic study of self-advocacy groups in the United States and a current directory of active self-advocacy groups organized on a state-by-state basis. Discussion of the survey results includes information on issues such as self-advocacy growth and development; group meeting locations; membership; activities; and the future of self-advocacy.
(in cooperation with People First of Illinois and the Illinois University
Affiliated Program in Developmental Disabilities)
444 North Capitol Street, N.W., Suite 846
Washington, DC 20001-1570
Family and Friends
That leadership is important in self-help groups is undeniable. This book is an attempt to document a process of change for any self-help group. The purpose of this report is to highlight the unique nature of the leadership development process with a self-help group in mental health and also to raise questions, outline resources and suggest ideas useful to other groups concerned about change. Care has been taken to highlight that this is a "specific process" from which a linkage to "general principles" and issues can be made.
Mental Health/Waterloo Region
179 King Street, South
Waterloo, ON N2J 1P7
CANADA
in the Human Services
P.O. Box 3036, Station C
Kitchener, ON N2G 4R5
CANADA
Centre for Research & Education in Human Services
This study of personal empowerment examined the lives of individuals with disabilities in their efforts to increase their participation and to gain more control of their lives. The experiences of the people studied illustrate that empowerment is unique to each individual and his or her context. The book begins with some discussion about defining empowerment and about the role of powerlessness in people's lives. Following chapters discuss issues related to empowerment, such as: gaining awareness, support from others, the role of resources and services, and the role of participation in empowerment.
P.O. Box 3036, Station C
Kitchener, ON N2G 4R5
CANADA
Available from author:
Decision making is one issue that needs to be addressed when organizing a self-help group. This book is an example in this endeavor, in that it helps consumers be better prepared in the practice of decision making. This book is aimed at staff, educators and advocates and is geared to meet the needs of people at differing levels of comprehension.
Jennifer Mohr Johnson
238 Hampton Drive
Venice, CA 90291
State Council on Developmental Disabilities
In 1983, People First of California contracted with the California State Council on Developmental Disabilities to assess unmet service needs of people with developmental disabilities. The contract also asked for ideas on the best ways to get people with developmental disabilities to talk about their needs, and finally, for People First to develop a model for helping people with developmental disabilities become self advocates and learn how to form self-advocacy organizations.
1507 21st Street, Room 320
Sacramento, CA 95816
Ednick Communications
This self-advocacy booklet, perhaps the best resource on the various aspects of self-advocacy, is written for people with disabilities who have an interest in organizing or becoming part of a movement which advocates for their own rights and services. The roles of self-advocates and their advisors are clearly delineated in the booklet, but at the same time there is a recognition that each self-advocacy group will be unique.
P.O. Box 3612
Portland, OR 97208
InterServ
This is a report on the proceedings of a conference on self-advocacy for people with developmental disabilities. Some of the topics dealt with in this conference were the nature of meaningful work and participation in community activities, consumer empowerment and the effects of attitudes of the community and labeling by professionals of people with developmental disabilities. The booklet has quotes from several government officials as well as from many program participants.
Clarence York, President
39 East 51st Street
New York, NY 10022
Available from:
In the Winter of 1995, the national organization of Self Advocates Becoming Empowered (SABE) conducted a survey asking state advocacy groups to share the accomplishments and activities that helped them to build supports for each other. Specifically, SABE wished to know "how self-advocates are helping each other open doors within the areas of community, housing, work and relationships." This book is a result of their survey and tells the story of the meaningful contributions that self-advocacy groups are making throughout the United States.
Tulsa Arc
16 East 16th Street, Suite 405
Tulsa, OK 74119-4447
In G. Dybwad & H.A. Bersani, Jr. (Eds.), New voices: Self-advocacy by
people with disabilities (pp. 217-234). Cambridge, MA: Brookline Books.
This chapter describes the evolution of a national self-advocacy organization, Self Advocates Becoming Empowered, from the perspective of one author, who has been involved as an advisor, and the second author, who has been involved as an organizer. It provides information about events and developments leading up to the establishment of SABE, as well as specific organizational efforts involved in the creation of SABE itself. Discussion includes logistical issues such as voting and structure, as well as perspectives about what was exciting and frustrating throughout the process. The last section of the chapter reflects on issues and challenges that SABE faces in the near future.
World Institute on Disability
This booklet provides a description of the World Institute on Disability's Quality of Life Project, a project that culminated in a series of conferences in which people with developmental disabilities discussed and made recommendations related to four areas: working, living, loving, and playing. Their recommendations are incorporated in the booklet, as are several appendices that would be helpful to those wishing to put on similar conferences.
510 16th Street
Oakland, CA 94612
In G. Dybwad & H.A. Bersani, Jr. (Eds.), New voices: Self-advocacy by
people with disabilities (pp. 203-215). Cambridge, MA: Brookline Books.
The authors of this chapter were both highly involved in self-advocacy in Nebraska, one as a staff person/organizer and the other as an advisor. It describes history and background of self-advocacy in the state, organization of chapters and efforts to strengthen chapters, some of the accomplishments of People First of Nebraska, and some of the lessons learned. It would be useful reading for people in other states who are involved in local and statewide self-advocacy efforts.
The G. Allan Roeher Institute
This leadership and training manual was written for leaders, members and advisors who are involved in People First, who are involved in self-advocacy, or who are interested in starting a People First group or making their current group "louder and stronger." People First is one of the many self-advocacy organizations; organizations led by persons with disabilities that are helping persons with disabilities learn "to speak up for themselves and to stand up for their rights." The manual itself answers the following questions and discusses the following issues: what self-advocacy is about, how People First can help you, why do we need self-advocacy; the power of a group, organizing for change, helping each member of People First, rights, strengthening your group, advisors, finding a good advisor, and leadership. To support the answering of these questions and discussion of the above issues are a number of illustrations. The voices of persons with disabilities are also strong in this manual. Explanations and examples all come from, and are in the words of, persons with disabilities themselves. This personal emphasis makes the manual clear, effective, and empowering.
Kinsmen Building, York University
4700 Keele Street
North York, ON M3J 13P
CANADA
2. Advocacy
Wisconsin Coalition for Advocacy
This manual provides the reader with a basic understanding of state and federal laws which specifically apply to Wisconsin residents who have physical or mental disabilities. It should be helpful to individuals wishing to advocate for their own rights, or the rights of others. It was also written as an informational guide about the rights of people with disabilities. Brief legal citations that are included may make it useful for lawyers.
16 North Carroll, Suite 400
Madison, WI 53703
Research Press
As its title suggests, Unraveling the special education maze is a book about how parents can effectively work with and advocate in schools to improve the quality of programming for their children. Barbara Coyne Cutler, a parent, has long been an activist on behalf of children's rights. She brings a wealth of experience and examples to the text.
2612 North Mattis Avenue
Champaign, IL 61820Family Resource Center on Disabilities
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.
20 East Jackson Boulevard, Room 900
Chicago, IL 60604
PACER Center, Inc.
This guide is designed to help people with disabilities, their families, and advocates learn about the ADA and how it can aid in the prevention of discrimination against people with disabilities. The guide covers the ADA definition of a disability as well as the five Titles under the act. Coverage is done in a manner that is easily comprehensible and through the use of many fun sketches and stories. Lists of responsible agencies, ADA resources, and parent training and information centers are also included at the end of this guide.
4826 Chicago Avenue, South
Minneapolis, MN 55417-1098
Media Publishing
This book is intended for use by all persons who deal with the important human issues confronted by persons with physical or mental limitations. Chapter One focuses on Attitudinal Barriers and demystifies some of the generally accepted misconceptions regarding people with disabilities (e.g., disability is inability). Outlined in the following chapters are employment, accessibility, housing, education, and transportation. In reference to each of these issues, state, federal, and local laws are highlighted and practical solutions to these problems are suggested in each chapter.
2440 "O" Street, Suite 202
Lincoln, NE 68510-1125
Governor's Planning Council on Developmental Disabilities
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 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.
Minnesota State Planning Agency
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
Lexington Books
This text chronicles judicial activity during the second half of the twentieth century. It is a comprehensive review that reflects on the multitude of legal developments from a variety of perspectives--historical, international, and policy-oriented--that help explain the growing awareness of the need to enforce human and legal rights for individuals with a mental disability.
D.C. Heath and Company
Lexington, MA 02173
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.
1221 Avenue of the Americas
New York, NY 10020
Community Human Rights Committee Project
This manual is based on training programs conducted by the Human Rights Committee Project Staff. It is directed at volunteers who have already received substantive training or who have experience working in human services for people with developmental disabilities.
Developmental Disabilities Center
Temple University
Ritter Hall Annex, 9th floor
Philadelphia, PA 19122National Council on the Handicapped
Although the nation's goals regarding citizens with disabilities have often been stated, Federal programs and laws have often deviated from the paths leading to these goals. This report results from Congress' direction to the National Council on the Handicapped to assess Federal programs to determine the extent to which they achieve the following: a) provide incentives or disincentives to the establishment of community-based services for individuals with disabilities; b) promote the full integration of such individuals in the community, in the schools, and in the workplace; and c) contribute to the independence and dignity of such individuals.
800 Independence Avenue, S.W., Suite 814
Washington, DC 20591
American Bar Association's Committee on
Persons labeled with mental retardation or developmental disabilities are often cited as the overlooked group in the ADA legislation. Yet, "the ADA has different consequences in many important areas for persons with mental, developmental, learning, and cognitive disabilities than for persons with physical disabilities. Some of these differences may result in fewer protections for individuals who have mental impairments." This guide is designed for practitioners who represent persons with disabilities, such as lawyers and other advocates. Issues discussed include: the act itself, enforcement mechanisms, mental disability coverage, key legal concepts, the hiring process, work placement accommodations, health insurance and worker's compensation, employer-sponsored health benefits, licenses, credentials and Bar admissions, medical licensure, treatment issues--prescriptions, side effects, right to refusal of treatment--attendant care, courthouse access, and housing. Also included in the appendices are descriptions of: mental disability terminology, prior federal laws, summaries of major case decisions, and a list of national resources.
Mental and Physical Disability Law
1800 M Street, N.W., Suite 200
Washington, DC 20036-5886
Abingdon Press
In this book, Perske traces the life of Joe Arridy from birth to gas chamber (1915-1939). Arridy, a Syrian-American, had been kicked out of elementary school, labeled "feebleminded," and placed in a "state home for mental defectives." During the Great Depression, when thousands of people traveled by "hopping freights," he walked away from the institution and became an avid boxcar rider until a sheriff in Cheyenne, Wyoming, led him to confess to the vicious rape and ax murder of a teenager in Pueblo. Arridy was tried and convinced in Pueblo under strange circumstances. He was executed in Canon City even though Warden Roy Best worked undercover to stop the execution. This powerful historical account is relevant, as well, to the current experiences of people labeled mentally retarded in the criminal justice system.
201 Eighth Avenue, South
Nashville, TN 37203
Abingdon Press
This book is a compilation of accounts of encounters of people with developmental disabilities with the criminal justice system. Some become caught up and hidden away in the criminal justice system for years; others are executed. Perske wrote this book in order to shed light on such situations. He wonders, whether guilty or innocent, did the system treat that person as other citizens are treated when charged with the same crime? Did that person receive equal justice?
201 Eighth Avenue, South
Nashville, TN 37203
In The pursuit of leisure: Enriching the lives of people who have a disability.
This chapter comes from a book entitled The pursuit of leisure. 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.
York University, Kinsmen Building
4700 Keele Street
North York, ON M3J 1P3
CANADA
3. Families
Random House
This remarkable book is a father's story of the life of his 4-year-old son James, who has Down syndrome. It is far more than just a personal memoir of his son's birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as I.Q. testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just his own family's experiences in these realms, but also concepts such as social justice, what it means to be human, and what kind of society we value and by what means we determine it.
400 Hahn Road
Westminster, MD 21107
New York: Basic Books, Inc.
Having a severely handicapped child, says the author, makes a difference in the family. At first, willy-nilly, the disabled child is a dominant motif. But in time, the family becomes accustomed to the situation and gradually returns to the mainstream. Born out of her own experience as the mother of a multiply handicapped boy, this book is about how it feels to belong to a family with a disabled child.
Penguin Books
40 West 23rd Street
New York, NY 10010
The G. Allan Roeher Institute
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.
Kinsmen Building, York University
4700 Keele Street
North York, ON M3J 1P3
CANADA
Woodbine House
"Every person deserves the chance to love and to be loved, regardless of their mental or physical disability." Yet, human services for the most part fail to extend this need to include persons with disabilities. Either it is assumed that these persons do not want or cannot benefit from intimate relationships, or we are simply too embarrassed to discuss the matter. In this book we enter into conversation with 15 couples, of varying ages and nationalities, who have found meaningful intimate relationships. We learn about "earnest beginnings"; marriage; parenthood--a form of family about which we often forget; long-term couples; and, most of all, that persons with disabilities can, and do, have meaningful intimate relationships with other persons.
5615 Fishers Lane
Rockville, MD 20852
TASH
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 is a very personal description of the Moise family's life with Barbara, the child with the disability, and of the family's suffering and growth as they encountered inexpert and insensitive professionals, inadequate services, societal rejection, and the realization that these were not the family's fault but instead the result of a social injustice that could be resisted. 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. (There are many books that belong to this genre, and that will not be annotated here for space reasons. Feel free, however, to write or call the Center on Human Policy for other titles.)
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
In J. A. Racino, P. Walker, S. O'Connor, & S. J. Taylor (Eds.), Housing, support, and community: Choices and strategies for adults with disabilities (pp. 189-204). Baltimore: Paul H. Brookes Publishing Co.
Cory Moore was a professional in the developmental disability service system as well as a parent of child with a disability. She wrote this chapter from her parent perspective. It describes the experience of supporting her daughter to move away from home; first to live in a group home and eventually a home of her own. Many parents will find the chapter helpful as she relates the feelings and dilemmas she experienced and shared with other parents in this process. She discusses the limitations of group home living and the advantages and risks of home ownership.
In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life (pp. 193-210). Baltimore: Paul H. Brookes Publishing Co.
Each family is unique. They come from different racial, ethnic, and socioeconomic backgrounds. Yet, in family support services, disability usually overrides these other differences. This chapter looks at four families, from different backgrounds, in terms of (1) their definitions of their needs, including family versus the individual, concrete, and practical needs; (2) change from the private family to the public client role; and (3) cost of help to families. O'Connor concludes by reminding professionals must get to know families and appreciate them for who they are in terms of their values, fears and concerns.
In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life (pp. 193-210). Baltimore: Paul H. Brookes Publishing Co.
Traditionally, families of children with disabilities were described in terms of negatives--stress and grieving. Reduction of this negative focus can occur by, instead, viewing families in terms of relationships of acceptance. Accepting relationships view individuals not in terms of differences, but, simply, as family members. This chapter tells the story of the Henry family. The Henry's youngest son, Chas, has been labeled as autistic. However, the Henrys see Chas according to the same beliefs, values, and rules that they use for their other sons. A relationship of acceptance allows the Henrys to see Chas's `autistic tendencies,' such as, flapping his hands and waking up at night, as signs of excitement and inherited family habits, respectively. Through this family, O'Connor helps readers to understand the nature of long ignored, familial acceptance relationships.
Abingdon Press
As the author says, "this book is for families who are trying to turn a tough situation into a rich experience." This is one of THE books for families in which one of the members has a disability. In 28 brief up-beat chapters, the author confronts and exorcises the ghosts which our culture imposes on disabled persons and their families. He shows many ways parents and families can overcome their fears and inhibitions. Some of the wide-ranging topics discussed include: changing world views, theology, human dignity, sexual development, family systems, and opening opportunities for persons with retardation and other disabilities. To clarify his meaning, draw out his implications and encourage discussion, the author concludes most chapters with mini-"home"-work assignments entitled "Consider these options." The marvelous illustrations re-double the impact of this impressive little book.
201 Eighth Avenue, South
P.O. Box 801
Nashville, TN 37202
Beacon Press
This book is about parent self-help and advocacy, and discusses the ways in which parents facing all sorts of problems, ranging from loss of a child due to drunk driving to abusiveness toward their children to having a child with a disability, have come together to help and get support from parents facing similar problems. The author discusses ways in which people sharing the same experience can empower each other, gives a history of parent activism, discusses and debunks commonly held stereotypes of parents, and gives a myriad of examples of ways parent power has changed laws, services, and attitudes. This book is useful for several reasons--it gives a history of a number of parent-initiated movements (black single parents, parents of children with disabilities, etc.), showing how the issues they face and the forces to which they have responded may have common sources; it describes women activists in all these movements; and it lists parent self-help and advocacy organizations.
25 Beacon Street
Boston, MA 02108 Inclusion Press
In 1986, just before her 25th birthday, Catherine moved from her parents' house into her own home. A previous book by her mother, Does she know she's there (to be reissued by Fitzhenry & Whiteside in 1998), documented her life story. This book provides a continuation of that story. It describes the planning and effort that goes into ensuring that she has the necessary paid supports available, as well as the role of family members, housemates, and friends in Catherine's life today. A must read for families as well as professionals.
24 Thome Crescent
Toronto, ON M6H 2S5
CANADA
Harcourt Brace Jovanovich Publishers
Like most books that deal with parents' perspectives on disability, this book describes the emotional stages that parents go through on learning of their child's disability. What makes it a book to be recommended is that it also describes how parents have dealt with these stages.
1250 Sixth Avenue
San Diego, CA 92101
Macmillan 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.
Front & Brown Streets
Riverside, NJ 08075
1300 Alum Creek Drive
Columbus, OH 43216Charles 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 seen as 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.
1300 Alum Creek Drive
Columbia, OH 43216
4. Acceptance, Relationships, and Community
In M. F. Hayden & B. H. Abery (Eds.), Challenges for a service system in transition (pp. 83-119). Baltimore: Paul H. Brookes Publishing Co.
The authors stress the importance of a wide variety of types of social relationships in people's lives. The chapter begins with a discussion of the nature of social relationships. It elaborates on issues related to social relationships and networks, including a review of related research. A person-centered approach to the development of social relationships is advocated, with examples and strategies offered.
Beach Center on Families and Disability
This monograph, aimed primarily for families and educators, is the result of a study on friendship that focused on the Hispanic population. The intent was to find examples of "successful" friendships for children who experience significant disability. The stories are presented here, followed by a concluding section outlining "friendship tips" and giving additional resources.
3111 Haworth
University of Kansas
Lawrence, KS 66045
Allen & Unwin, Inc.
This book analyzes the relationship between ideas about community life and the impact of social policy, demonstrating that, at least in England, there is "a vacuum at the heart of care policy which is likely to lead to ineffective or deteriorating provision of services" (p. ix). Bulmer's analysis is very relevant to North American discussions about community integration of people with disabilities. The book focuses more on informal support or care than on services and service systems, but he looks at both and at the interface between the two types of care in the community. His analysis draws heavily on a variety of research studies conducted in neighborhoods, within groups of families, and in other aspects of community life and is a major contribution to the discussion about community integration.
8 Winchester Place
Winchester, MA 01890
Frontier College Press
This essay is also a chapter in L. Meyer, C. Peck and L. Brown, Critical issues in the lives of people with disabilities (1990), Paul Brookes Publishing Company. It is a personal reflection by Marsha Forest on the many relationships that have enriched her life and the lives of her friends and family members. Interwoven with the personal stories are stories about integrating students with disabilities into regular schools. Forest points out how much we all have to give each other, and how much we miss when people with perceived differences are excluded from schools, neighborhoods, and friendship circles.
35 Jackes Avenue
Toronto, Ontario M4T 1E2
CANADA
Harvard University Press
This ethno-historical study is an excellent portrayal of community life for deaf and hearing individuals of Martha's Vineyard. The reader is presented with the history of how the deafness was brought to the island. The book allows the reader to view the typicality of the lives of Islanders who were deaf, typicality due to the community's acceptance and ability to communicate with them. Groce takes us beyond the confines of medical or social definitions of deviancy and offers evidence that our pre-conceived stereotypes of what a disability may mean are really determined by the social construct we create as a society.
79 Garden Street
Cambridge, MA 02138
Human Services Research and Development Center
This manual grew out of the "Friends" project, a one-year grant project sponsored in 1989-90 by the Human Services Research and Development Center of St. Paul, Minnesota, and funded by the Minnesota Governor's Planning Council on Developmental Disabilities. The purpose of the project was to learn about and develop methods for the staff of residential service agencies to support people with disabilities in establishing friendships and relationships with nondisabled people in their communities and to assist people with disabilities in being more a part of their communities.
Minnesota Developmental Disabilities Council
300 Centennial Office Building
658 Cedar Street
St. Paul, MN 55155
Center for Urban Affairs and Policy Research
This guide provides many stories, strategies, and resources related to building stronger communities. This involves looking at the capacities and contributions of all community members, including youth, people with disabilities, and older people, among others.
Neighborhood Innovations Network
Northwestern University
2040 Sheridan Road
Evanston, IL 60208
OAMR
A clear and concise look into one province's struggle in attempting to create a responsive community, this study addresses the idea that, by themselves, more rights and services for people with disabilities and their families are not enough, and that physical presence alone does not mean inclusion. True involvement within the community, it concludes, means necessary supports to allow full participation and opportunities for friendships.
1376 Bayview Avenue
Toronto, Ontario M4G 3A3
CANADA
Communitas, Inc.
This monograph opens with the key premise of "bridge-building." "Real integration, the development of genuine networks of support, requires very focused and assertive effort(s) on behalf of facilitators who initiate, support and maintain new relationships. We call these facilitators "bridge-builders" because they build bridges and guide people into new relationships, new places, and new opportunities in life" (p. 1).
73 Indian Drive
Manchester, CT 06040
Communitas, Inc.
The authors offer the experiences of several "circles of support" now in existence in Connecticut. Inspired by the efforts of the Joshua Committee over the past decade, the authors helped found circles of support around several people with disabilities. "A circle of support is a group of people who agree to meet on a regular basis to help the person with a disability accomplish certain personal visions or goals" (p. 3). The monograph gives practical information on the process of starting and maintaining a support circle, with several actual examples. Circles of support serves well as both an introduction to the concept and as a useful resource for people already familiar with the issue.
73 Indian Drive
Manchester, CT 06040
In A. N. Amado (Ed.), Friendships and community connections between people with and without developmental disabilities (pp. 9-40). Baltimore: Paul H. Brookes Publishing Co.
Friendships are described as "unlikely alliances" for people who are separated and isolated by prejudice against disability. The authors begin by posing a number of questions: What can people with developmental disabilities expect from their social relationships, particularly their relationships with people without disabilities? Is the meaning of "friend" exhausted by lack of hostility or by benevolent patronage? Or, are some deeper meanings possible, and, if they are, how can people understand them, call them forth, and support them? What challenges come with friendship? The chapter then discusses four dimensions of friendship: attraction, embodiment, power, and community. Through communities of resistance, people can counter the dominant social beliefs that devalue the community's members and their relationships and support one another to get on with their lives.
In J. Nisbet (Ed.), Natural supports in school, at work, and in the community for people with severe disabilities (pp. 17-63). Baltimore: Paul H. Brookes Publishing Co.
This chapter discusses issues related to community membership and belonging for people with severe disabilities. The authors state, "Because people with severe disabilities cannot take membership for granted, those concerned with building stronger, more inclusive communities must consider how people deny membership can be established." They assert that people with disabilities can teach all of us a good deal about the social relationships that are at the foundation of civil life. Some of these teachings can be categorized into three topics: (1) the consequences of long-term exclusion form common memberships; (2) the benefits implicit in recognition as a member, and (3) some of the explicit work necessary to change patterns of exclusion so that a person moves to being known and treated as a member. Examples are provided of each of these topics. The chapter concludes with discussion of the ways in which human services can help, as well as some of the paradoxes of community building.
The Community Life Project
This monograph is part of the growing literature which critiques the human service system even when it is based in the community. It describes the efforts of people with a variety of disabilities to take their place within the community and by others to accept them. O'Connell asserts that community-based services can isolate people with disabilities from community life. Surrounded by paid staff, many clients in the human service system are cut off from the opportunities to meet and develop relationships with typical people.
Center for Urban Affairs and Policy Research
Northwestern University
2040 Sheridan Road
Evanston, IL 60208
Pennsylvania Developmental Disabilities Planning Council
This monograph is a collection of stories, poetry, and essays about the situation of people with disabilities in American communities. It includes writing by people who have disabilities, family members, and friends and advocates.
569 Forum Building
Harrisburg, PA 17120
In S. M. Pueschel (Ed.), The young person with Down Syndrome: Transition from adolescence to adulthood. Baltimore: Paul H. Brookes.
In the first part of this chapter, Strully and Bartholomew-Lorimer neatly summarize the experiences of many people with disabilities at the hands of the human service system. By receiving services, individuals are turned into clients and become viewed primarily in terms of their particular disability. They are surrounded by programs and staff, and are cut off from typical people, places and events. One result of this is that people in the community come to believe that segregation is an appropriate response to people with disabilities.King's Fund Centre
This monograph is worth sending to England for. It attempts one of the more comprehensive discussions of interpersonal relationships in the lives of people with developmental disabilities (who are referred to in the publication as having "learning difficulties"). The monograph begins with descriptions of some of the types of relationships that people have and/or desire more of. These include friendships, acquaintances, organizational membership, and being part of a family and a neighborhood. Some basic, common-sense strategies that families, individuals with disabilities, service workers and "typical citizens" might undertake in order to help maintain and increase the existing relationships in a person's life are outlined. The third and last chapter is a cautionary one that explores some of the difficulties faced by people with handicaps in developing a wide range of personal relationships.
126 Albert Street
London, NW1 7NF
ENGLAND
5. Women and Caregiving
Macmillan Education
This book reflects the author's attempt to answer questions about the relationship between feminism, notions of collectivism, and present-day community care policies. She sets out by examining the development of community care policies and what they mean for women and for people who need various support services. Thereafter follows an analysis of familism which the author links with the wider ideology of possessive individualism. Dalley argues that current thinking about care is based on the principles of familism and possessive individualism and that these could and should be replaced with the principle of collectivism. Society as a whole should take responsibility for its weakest members and the principle of collective responsibility could lead to different and more effective forms of care which are acceptable to the people who need care and allow them to maintain their dignity. The book presents an important step forward in the discussion and understanding of community care. It builds upon previous work, especially the groundwork done by feminist writers who have provided the critique of contemporary approaches to informal care. An interesting and thought-provoking book.
Houndmills, Basingtoke
Hampshire RG21 2XS
ENGLAND
Routledge & Kegan Paul
This volume consists of eight chapters which examine various issues in the lives of women who provide unpaid care for children and adults who have handicaps, are chronically ill, or elderly. The chapters are organized in three sections: (1) The Social Context of Caring; (2) The Experience of Caring; and (3) The Economics of Caring. The central focus of the book is on the tension between women's economic independence (actual, potential or desired) and their traditional role as unpaid caregivers. The ten contributors to this volume explore different facets of women's experience of caring, the dilemmas which caring poses for women and the social policy issues raised by the particular topics under discussion. This book was one of the first attempts to give a comprehensive analysis of women's informal caring work. It still remains one of the most important and much cited books on this issue.
9 Park Street
Boston, MA 02108
Tavistock Publications
This British book is based on in-depth interviews with nineteen people who provide care for frail and elderly family members. Fifteen of these caregivers are women and four are men. The author describes the lives and experiences of these "carers" (as she calls caregivers) in rich detail and manages to portray her informants in such a way that they come alive on the pages.
The Introduction places the book in the context of other British literature and research on caring and the British social policy of community care (which has many parallels to the U.S. social policy of community integration). The purpose of the book is to fill a gap in the literature on caring and explore, "... the way particular carers in a family constellation emerge, the way that carers talk about and construe the feelings they have about their work, the impact of caring on the relationship between carer and cared for" (page 2).
(in association with Methuen)
29 West 35th Street
New York, NY 10001
In A. Walker (Ed.), Community care: The family, the state and social policy (pp. 13-39). Oxford: Basil Blackwell & Martin Robertson.
This chapter sets out to lay the foundations for a critical assessment of the concept of community care. It examines the meaning of community care from the position of different groups involved; politicians, planners, policy makers, and those in need of care and their families. It also examines the social division of care, particularly between the state and the family. The chapter traces the official development of community care policies in Britain and examines the meaning of community care to the family who provide most of the care. It also discusses some possible future directions for community care policies which attempt to avoid the worst aspects of the current policy, particularly the disproportionate burden it puts on women and families.
In A. Walker (Ed.), Community care: The family, the state and social policy (pp. 40-55). Oxford: Basil Blackwell & Martin Robertson.
This chapter is written from a feminist perspective and argues that the concept of "community" is often used in such a way that it should rather be understood as "family." This is especially true when it is used in connection with the provision of social and welfare services. Moreover, in this same context, the word "family" really means "women." The author criticizes both the concept and ideology of community as it has developed over the past century and suggests that it is riddled with reactionary implications and, in particular, with a vision of the family which is incompatible with women's liberation. The community, the author argues, is based on an ideology that oppresses women by silently confining them to the private sphere without so much as even mentioning them. The author calls for a new family policy and suggests that the family as it currently exists must change if not only women, but also men and children are to break out of their present situation and harmful behavior patterns based on the current sexual division.
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