Creating Change
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CREATING CHANGE CREATING CHANGE Innovations in the World of Disability “Fortunately amidst this economic gloom, Creating Change is a shining light. Creating Change presents a unique and inspiring set of stories of Ashoka Fellows across the world, whose work not only changes the lives ■ of individuals with disabilities and their families, but also how commu- Innovations in the World of nities, business and governments welcome and include people with disabilities as valued and contributing citizens. The sixteen Ashoka Fellows are all recognized leaders and social innovators in the !eld of disability. Together these pioneers are creating a new paradigm of disability that has the potential for domestic and global impact.” Eddie Bartnik, Director of Metropolitan Community Support Disability ISBN 978-83-89681-77-5 CREATING CHANGE Innovations in the World of Disability 1 2 INDIA PALESTINE IRELAND SENEGAL CANADA SPAIN GERMANY EGYPT TABLE OF CONTENTS Foreword: Bill Drayton 5 Introduction: Eddie Bartnik 6 About Ashoka’s (Dis)ability Initiative 8 Javed Abidi 11 Ola Abu Al Ghaib 17 Caroline Casey 23 Ndèye Dagué Gueye Dieye 29 Al Etmanski 35 Isabel Guirao 41 Andreas Heinecke 47 Maha Helali 53 Cosmas Okoli 59 Piotr Pawłowski 65 Beatriz Pellizzari 71 Victoria Shocrón 77 Shudarson Subedi 83 Ame Thiam 89 Estela Villareal Junco 95 Howard Weinstein 101 About Ashoka 105 About The Friends of Integration Association 105 NIGERIA POLAND ARGENTINA ARGENTINA NEPAL SENEGAL MEXICO BRAZIL Authors: Rafael Barifouse, Rama Chari, Al Etmanski, Allana Gallagher, Maha Helali, Carolina Heindenhaim, Andreas Heinecke, Khetam Malkawi, Guédel Mbodj, Carlos David Salina Olascoaga, Okechukwu Ozowalu, Wilma J.E. Randle, Leonardo Shocrón, Elena Sevil- lano, Pranab Man Singh, Piotr Stanisławski Edited by: Philip Earl Steele With the cooperation of: Anna Obem, Dorota Starzyńska Copy-editing: Philip Earl Steele Photographs: A Toda Vela, Yusuke Abe, Dialogue in the Dark’s archives, Ola Abu Al Ghaib’s archives, Ndèye Dagué Gueye Dieye’s archives, Association Handicap.sn’s archives, Maha Helali family’s archives, Integracja’s archives, arch. Shudarson Subedi, Howard Wein- stein’s archives, DuToit, Fennell, G2 Baraniak, Greg Keating/Keating Photography, Verónica Guerman, Jerzy Kośnik, La Usina’s archives, Juan Rodrigo Llaguno, MAARDEC, Meek, NCPEDP, O’Sullivan, Ojofotográfico, PLAN, Ignacio Puente, Pape Seydi, Piotr Stanisławski, Stars of Hope, Ewa Strasenburg, Webb, Arne Weychard Layout design: Małgorzata Pioś Layout: Magdalena Borek Publisher: Stowarzyszenie Przyjaciół Integracji, ul. Dzielna 1, 00-162 Warszawa, tel.: +4822 635 13 30 © Copyright by Stowarzyszenie Przyjaciół Integracji – Ashoka Innowatorzy dla Dobra Publicznego Warszawa 2009 First printing This publication is not for sale. All rights reserved. No part of this report may be printed or reproduced in any manner whatsoever without the written permission of the publisher 4 ISBN 978-83-89681-77-5 THE MOST POWERFUL A Preface by Bill Drayton, Ashoka’s First Entrepreneur What is the most powerful force in the world? It is always a big, pattern change idea…But only if it is in the hands of a great entrepreneur. That is what has launched every major historic change. Can those with disabilities be amongst these most powerful people? Of course! Many of Ashoka’s leading social entre- preneur Fellows are. Every such social entrepreneur makes a mockery of the term “disability”. How can one even begin to think that a social entrepreneur is “disabled”? Ashoka’s central purpose is to help the world make the transition from the long millennia during which there were only a few players to a far happier “everyone a changemaker” society. The Agricultural Revolution produced only a very small surplus, which meant that only a tiny portion of the population could engage in anything more than creating the small agricultural surplus needed to support an elite. With change escalating logarithmically, and with change coming from more and more vectors and combinations of vectors, the “few players” system simply is no longer viable. The key factor for success for any organization or society increasingly will be measured in terms of what proportion of the population are changemakers, and what level of this skill they bring, and how well they are connected. (Why did Detroit and Calcutta wither while San Jose and Bangalore took off?) What counts in this new world? It is not physical brawn. Instead, it is a very complex set of social skills that every child and young person must learn empathy, teamwork, leadership, and changemaking. Plus the confidence to acquire these skills and to define oneself as a changemaker. In the “everyone a changemaker” world, virtually everyone can be a changemaker. The disability movement has been intuitively moving in this direction. It seeks to ensure that the 10 percent of the popu- lation who have disabilities live full lives – which ultimately means contributing importantly to society. The movement’s ultimate gift is that of enabling those it serves to be givers. And that can only mean helping them become changemakers in a world defined by change. This end goal is clear and clearly right. Getting there requires brilliant social entrepreneurship. This volume will give you a sense of the way forward – and also of the magic of social entrepreneurship. ◄ Photo: Yusuke Abe 5 CREATING CHANGE: INNOVATION IN THE WORLD OF DISABILITY Eddie Bartnik, March 18, 2009 Having a disability places a person in the world’s largest minority group. The World Health Organization (WHO) estimates 10% of the world’s population – approximately 650 million people, of which 200 million are children – experience some form of disability. This figure will increase as the population ages. WHO also reports that ”Disability is both a cause and consequence of poverty and that about 80% of the world’s population of people with disabilities live in low income countries and experience social and economic disadvantages and denial of rights.” The time is ripe for a global book on creative social solutions in the field of disability. The global economic crisis casts an even darker shadow on the ravaging handicap of poverty. The thinking that got us into this profound challenge is not the thinking that will get us out. Societal response has not been sufficient during a worldwide period of economic growth, and if history is an accurate predictor then shrinking government resources will lead to rationing even further the scarce allocation of resources and services, with disasterous consequences. We need to do much better. New thinking, new partnerships and new solutions are desperately needed. Fortunately amidst this economic gloom, Creating Change is a shining light. Creating Change presents a unique and in- spiring set of stories of Ashoka Fellows across the world, whose work not only changes the lives of individuals with disabilities and their families, but also how communities, business and governments welcome and include people with disabilities as valued and contributing citizens. The sixteen Ashoka Fellows are all recognized leaders and social innova- tors in the field of disability. Together these pioneers are creating a new paradigm of disability that has the potential for domestic and global impact. Creating Change is the outcome of a Global Ashoka Fellows Collaboration which began in 2007. The Collaboration un- derstands that “the interaction between ‘abled’ and ‘disabled’ is often hindered by stereotypes, fears, avoidance and prejudices.” Creating Change has three main aims: firstly, to challenge, inspire and change our thinking about what is possible in the field of disability; secondly to engage social leaders, business, governments and global organizations as strategic partners and supporters of the work of the Fellows; and thirdly to foster the international dissemination of these social innovations and influence global public policy. The global scale of the Ashoka Fellows’ work presented in this book covers 15 countries and a wide range of thematic areas including: education, employment, human rights, financial independence, empowerment of women with disabili- ties, access to computer skills, creating social support networks, social enterprise production of affordable health care products, development of mobility aids and equipment, recreation, arts and media. 6 The thinking behind the Ashoka Fellows’ work reflects a strong move away from the pity or charity model to a framework based on citizenship rights and the capacity of each person with a disability to contribute to their community. Rather than a focus on what people with disabilities can’t do (i.e. their deficits), the emphasis is on the inherent worth and dignity of each person as an individual and their gifts and capacity for contribution and self sufficiency. There is also an inherent belief in the concept of equal value partnerships between people with disabilities, their supporters, and a range of community, business and government organizations. A strong social enterprise approach is emerging that powerfully demonstrates a positive “can do” approach that links creative economic activity and generation of social benefit. New pathways are created that are positive and empowering, rather than being focused on negativity and waiting. Each story is intensely personal and is a wonderful gift to the reader with profound examples of courage, innovative thinking, collaboration with business, and structural change. Each story charts the passage from a small scale local initia-