Nothing About Us Without Us

AIDS AND EQUIPMENT IN THE COVER PHOTO

The cover photo shows Raúl, a boy born with club feet, whose story is told in Chapter 14 (page 97). If you look closely at the photo, you will see examples of some of the aids and equipment we explore in this book. These same items are shown in the drawings below, together with the page numbers where you can find them.

Also, hearty thanks go to the many disabled children, parents, and adults who participated in the problem-solving process.

Deep thanks go to Kennett and Jean Westmacott of People Potential in England for their emphasis on an empowering approach that puts the disabled person and family at the center of the problem-solving process. This innovative "partnership approach," introduced to the PROJIMO team, has provided much of the inspiration for this book. And for stretching our imagination for creative inventiveness, a strong vote of thanks goes to Reinder van Tijen of Stichting Demotech, Design for Self-Reliance.

Very special thanks for their essential contributions go to visiting experts in different areas of rehabilitation, therapy, and engineering who were involved in designing and creating personalized assistive equipment and in facilitating workshops - especially to Ann Hallum, John Fago, Ralf Hotchkiss, Oliver Bock, Michael Heinrich, Marybetts Sinclair, Jean Anne Zollars, and Kennett Westmacott.

For providing stories and photos of her creation of Appropriate Paper Technology aids for her daughter, Kim, warm thanks go to Sigi Lester.

Contributors to lively writings in the book include Oliver Bock, John Fago, and Gene Rodgers. Contributors of ideas and designs for specific innovative technologies include Monica Rook, Joep Verweij, and Annemick van Boeijen.

For introducing the author to innovative technologies in India, the author is grateful to San Yuenwah of UN-ESCAP, and to Lourdes Canziani of CORDE for information on new technologies in Brazil.

For specific outstanding photos in this book we thank John Fago, Renée Burgard, Ralf Hotchkiss, Ann Hallum, Kennett and Jean Westmacott, Sigi Lester, Lonny Shavelson, Mari Picos, and Shahidul Haque for SARPV-Bangladesh.

For help with drawings we thank Efraín Zamora, Elizabeth Irwin, and Alicia (Tattie) Brelsford. (Most of the photos and line drawings in this book were done by David Werner.)

For help with scanning all photos and drawings and integrating them into the text we thank Efraín Zamora, whose tireless work was consistently outstanding. Thanks for assistance with scanning also go to Merlin Schlumberger, and to Liisa Turan for technical assistance with Quark Express.

For technical assistance with photo preparation, layout and design, formatting, computer trouble-shooting, proofing, and a thousand odds and ends, I am deeply grateful to Jason Weston.

For their extremely important critical feedback on a draft of the book, I thank Ann Hallum, Kennett and Jean Westmacott, Mike Miles, Laura Krefting, Johan Borg, Ralf Hotchkiss, Pam Zinkin, and Sophie Levitt.

My deep appreciation goes to Renée Burgard for the final editing of the book and fine-tuning of the layout. Her artist's eye has done much to make this book more attractive.

For help with editing, proofreading and/or technical work, thanks go to Bruce Hobson, Trude Bock, Marianne Schlumberger, Tinker Spar, Jason Weston, Dorothy Weston, Edward J. Weston, Ted Weston, Tina Weston, and Lisa Wright.

Special thanks go to the Thrasher Foundation, whose assignment to PROJIMO of a 3-year grant for the development of innovative technologies provided the initial motivation for this book.

For the primary financial assistance for developing Nothing About Us Without Us we are grateful to the Norwegian International Disability Alliance, and specifically to Harold Lundqvist and Pal Skogmo for their trust in the venture and their encouragement. For funding assistance for final publication of the book we are deeply thankful to the Mulago Foundation, to the Liliane Foundation Support Fund, and to Sti. Kinderpostzegels in the Netherlands.

Finally, as always, my deep appreciation goes to Gertrude (Trude) Bock, who has contributed her home and her heart not only to making this and my earlier books a success, but also to giving the hundreds of disabled children whom she has cared for new hope and greater opportunities.

How to Use This Book

This is an "idea book" about problem solving - not a "cookbook" with precise instructions and measurements for making pre-designed aids and equipment. It is about thinking problems through rather than just following instructions. Nevertheless, you can use it as a reference book concerning different disabilities, assistive devices, and methods of problem solving.

The book is divided into an Introduction and 6 Parts. We suggest you start by reading the main Introduction. This gives an overview of the book's purpose and content. Each of the 6 Parts also has its own helpful introduction. Page-edges of these introductions are marked with short black lines. The book's index has page-edges marked with a long black line.
 

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TO FIND WHAT YOU ARE LOOKING FOR IN THE BOOK, YOU CAN USE:

The list of CONTENTS at the beginning of the book. This lists all the Parts and Chapters in the order that they appear in the book, and it gives page numbers.

The INDEX at the end of the book (the pages with the whole outer edge black, starting on page 345. This lists in alphabetical order (a, b, c, d, and so on) all the topics or names that you may want to look up. The Index is coded in this way: Names of persons who appear in the stories are listed in the Index alphabetically by their first name, like this: CARINA; EDGAR; MARI PlCOS. Names of assistive devices and technologies appear like this: braces; communication boards; wheelchairs. Names of ditferent disabilities or problems are listed like this: blindness; speech problems; spinal-cord injury. All other entries are listed in ordinary letters, iike this: Child-to-Child activities; India; land mines; women's rights.

If you cannot find what you are looking for, look under a similar name.
For example, if you don't find infantile paralysis, look under polio or paralysis.

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KEY PLAYERS. Most of the stories in this book come from PROJIMO, a community based rehabilitation program run by disabled villagers in Mexico. After the main Introduction to the book, there is a brief description of some of the members of the PROJIMO team, including MARl, CONCHITA, and MARCELO, whom you will meet often in the stories.

For further information on innovative technologies, or on groups to contact, see the two resource lists at the end of the book (just before the Index):

	Resource List I : Organizations and Programs, page 341 ;
	Resource List 2: Reading and Teaching Materials page 343.

Please note:
The first 4 Parts of this book focus on creating aids and equipment.
The last 2 Parts look at innovative approaches to the integration and participation of disabled persons in the home, community, school, and work place*.

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*Because this book is organized around individuals and their needs rather than by kinds of disability or assistive devices, to find information on a particular disability or device - such as cerebral palsy, or special seats - you may need to refer to several chapters or even Parts of the book. For this you will find the Index especially helpful.

An Invitation to Readers  to Contribute Ideas to Another, Similar Book

We hope that this book is only the beginning of an ongoing, still very incomplete process of sharing helpful ideas. It tells personal stories of the search for solutions by folks who mostly live in one small corner of the world (western Mexico). And it focuses mainly on physical disabilities, because that is the area in which PROJIMO (the village program that gave life to this book) happens to have the most experience.

Likewise, the stories told here and the solutions found may not be the most instructive or appropriate (even locally). We work with what we have, within our limitations. However, it is better to share blemished fruit than none at all.

We imagine that many of you - the readers of this book - are disabled, or that you relate to or work with persons with a disability. Many of you have your own great stories of how you have searched for and discovered solutions. On reading this book, perhaps some of you will get ideas for more useful innovations than the ones we describe. (We hope the book will inspire you to try out your own clever ideas - not just ours!)

Among disabled persons around the world, their families, friends, and those who work with them, there is a wealth of exciting ideas, rich experiences, and innovative solutions (or partial solutions). This book just touches the surface of what is possible.

So, here is our invitation:

We hope that you, the readers of this book, will send us your own stories and experiences. Let us hear from you about innovations, gadgets, "appropriate technologies," and "easier ways of doing things" - discoveries that you would like to share with others. If possible, include drawings, photos, or both. (See page 340, on Suggestions for Effective Information-Sharing in Print.)

There are 3 ways in which we may be able to share your contributions:

	We can share them with the PROJIMO team of disabled village rehabilitation workers. Your findings may trigger their imaginations to experiment with new ideas, designs and possibilities, adapting them to their own local resources and reality.
	We hope to include some stories in our Newsletter from the Sierra Madre, which reaches health and disability workers in 130 countries. (Write to us at HealthWrights if you might like to subscribe.)
	If we get enough good ideas, we may put together another book similar to this one, but hopefully even more useful because it will be more of a world-wide, cooperative venture.

In describing your innovations, please tell enough about the local situation and the people involved to make the stories personal and heart-warming. Try to show that technology should serve people, rather than people serving technology. 

The wooden walker, with its bigger wheels, rolls better on rough ground than the "modern" aluminum walker. The wooden front wheels act as brakes when the child puts his weight on them to step forward - a feature the aluminum walker lacks (see page 53). Also, because the wooden walker is heavier it gives more stability to the child with unsure balance.

Copyright 1998 by David Werner