Nothing About Us Without Us: Developing Innovative Technologies for, by and With Disabled Persons

David Werner (1998)

This book, together with ‘Disabled Village Children’, is the most important book on community-based approaches to disability that has ever been written.
—Peter Coleridge (Amazon.com review)

Our objective is not to catalogue a set of aids and equipment to be copied, but to share an Empowering Problem-Solving Approach.
—David Werner on Nothing About Us Without Us

 

Building on lessons learned from David’s book Disabled Village Children, Nothing About Us Without Us represents the fruits of a decade of efforts at Project PROJIMO. It aims to empower and inspire disabled village workers in their efforts to build community health and rehabilitation programs.

This is a book of true stories about people’s creative search for solutions. Written for disabled persons and their relatives, friends, and helpers, its purpose is to share exciting, useful ideas, and to spark the reader’s imagination: to stimulate a spirit of adventure!

This book differs from most manuals on disability aids and equipment in 4 basic ways:

  1. We make an effort to put the person and the process before the product. The 50 chapters cover a wide selection of disability aids that are relatively easy to make at home or in a village. But in presenting each innovation, emphasis is put less on the end-product (however important) than on the cooperative process of discovery.
    In this approach, the disabled person (and/or family members) often takes the lead, working as a partner and equal with service providers, technicians, or local crafts-persons. With this sort of partnership approach, results tend to be more enabling than when assistive equipment is unilaterally prescribed or designed.

  2. Our goal is not replication, but rather adaptability and shared creativity. True, most aids shown here can be easily replicated (copied exactly) at low cost at home or in a village workshop. However, placing strong emphasis on replication can be counter-productive . . . especially in the field of rehabilitation where the needs, possibilities and dreams of each disabled person are different. Too often, the routine construction of standardized designs contributes to a habit of trying to adapt the disabled person to the assistive device, rather than trying to adapt the device to the disabled person.
    Therefore: Our objective is not to catalogue a set of aids and equipment to be copied, but to share an EMPOWERING PROBLEM-SOLVING APPROACH.

  3. In most examples in this book, we start by looking at an individual disabled person. Placing that individual as central to the problem-solving process, we explore her or his unique combination of wishes and needs. Then we describe the cooperative, trial-and-error methods used in designing and testing possible solutions. The problem-solving is ongoing and open-ended. It may include anything from learning new skills or modifying the environment, to the invention or adaptation (or elimination) of an assistive device.

  4. Most of the rehabilitation workers and technicians responsible for the innovations in this book are themselves disabled. Because they too have a disability, they are more inclined to work with a disabled “client” as a partner and equal in the problem-solving adventure. Also, being disabled, they often have insights (an insider’s view) leading to new approaches that help enable the disabled individual with whom they work.

A Companion to Disabled Village Children

from Newsletter 34 (1996)

A companion to DISABLED VILLAGE CHILDREN. This exciting new book is scheduled for release in early 1997 and will be a companion to David Werner’s previous book, Disabled Village Children, which has become one of the most widely used Community-Based Rehabilitation guide-books worldwide.

50 stories. Unlike Disabled Village Children, however, Nothing About Us Without Us is more of a storybook than a guidebook. Its purpose is not merely to instruct, but to transform, to awaken readers—especially disabled persons and those working with them—to new and exciting possibilities. The book consists of 50 true stories, from Project PROJIMO (a world-renowned CBR program in western Mexico) and around the world, which stress one important theme:

Assistive devices and techniques for disabled persons tend to work better and be more empowering when the disabled user takes the lead- and when he or she is involved as a partner and equal in the problem-solving process.

How Nothing About Us Without Us Differs from Disabled Village Children

Editor’s Note: I asked David what the difference was between Nothing About Us Without Us and Disabled Village Children, as they are similiarly focused on disability. Here is an excerpt of our conversation.

David Werner

One of the best statements on it is something that Mike Myles quoted on the cover. I don’t remember exactly: “This is primariy a book about how to think. Because it’s a problem solving book.” And it makes the point that a lot of the health problems have specific signs and you can provide rote treatments for them. Alot of the disabilities, like cerebral palsy, every kid has a different set of problems, and whoever is working with that kid has to work with [him or her] and with the family and figure out ut what works best with that specific kid. And it’s a creative process, involving a lot of sharing and thining and involvement. And the book is primarily on developing: the substitle is “creaing assistive technology for by and with disabled people” It’s a collection of some 50 true stories, largely from Mexico, but from various countries around the world, which point out that the solutions you come up with tend to be much better when you work together for the solution for the disabled person and the rehab worker—looking for solutions together, rather than proscribing down at the person, which too often happens.

Jason Weston

One thing I like about that book is that it includes not only the successes but also the failures, the things that didn’t work out, and then what you did when ‘okay that didn’t work, now let’s try this’. So it’s not all just glowing with ‘this worked out perfectly’. it shows where the stumbles were and the challenges were.

David Werner

This is very true. And it’s based on real work with real people.