Disability in Different Cultures Reflections on Local Concepts Disability in Different Cultures Reflections on Local Concepts edited by Brigitte Holzer Arthur Vreede Gabriele Weigt This book is a collection of contributions presented and discussed at the symposium “Local Concepts and Beliefs of Disability in Different Cultures” (21st to 24th May 1998), organized and coordinated by the following NGOs: Behinderung und Entwicklungszusammenarbeit e.V. Essen/Germany Foundation Comparative Research, Amsterdam/The Netherlands Institut für Theorie und Praxis der Subsistenz e.V. Bielefeld/Germany Gustav-Stresemann-Institut e.V. Bonn/Germany The book is supported by grants from: Landesregierung Nordrhein-Westfalen Bundesministerium für wirtschaftliche Zusammenarbeit und Entwicklung Bundesministerium für Gesundheit Kirchlicher Entwicklungsdienst der Evangelischen Kirche in Deutschland durch den ABP Kindernothilfe e.V. Medico International e.V. Mensen in Nood/Caritas Raad voor de Zending der Nederlands Hervormde Kerk Studygroup on Transcultural Rehabilitation Medicine This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License. Die Deutsche Bibliothek – CIP-Einheitsaufnahme Disability in different cultures : reflections on local concepts ; [presented and discussed at the Symposium “Local Concepts and Beliefs of Disability in Different Cultures” (21st to 24th May 1998)] / ed. by Brigitte Holzer ... [Organized and coordinated by the following NGOs: Behinderung und Entwicklungszusammenarbeit e. V. ...]. – Bielefeld : transcript Verl., 1999 ISBN 3–933127–40–8 © 1999 transcript Verlag, Bielefeld Translations: Pat Skorge, Dr. Mary Kenney and Eva Schulte-Nölle Editorial assistance: Pat Skorge Typeset by: digitron GmbH, Bielefeld Cover Layout: orange|rot, Bielefeld Printed by: Digital Print, Witten ISBN 3–933127–40–8 5 Contents Introduction . 9 Brigitte Holzer, Arthur Vreede, Gabriele Weigt Concepts and Beliefs about Disability in Various Local Contexts Stigma or Sacredness. Notes on Dealing with Disability in an Andean Culture . 27 Ina Rösing Everyone Has Something to Give. Living with Disability in Juchitán, Oaxaca, Mexico . 44 Brigitte Holzer Defining the Role of Religion and Spirituality in the Lives of Persons with Disability in the Fatick Region, Senegal, and the Mono Region, Benin . 58 Erick V.A. Gbodossou Folklore Based Analysis for a Culture-Specific Concept of Inclusive Education . 78 Joseph Kisanji Blindness in South and East Asia: Using History to Inform Development . 88 M. Miles Some Cultural Representations of Disability in Jordan: Concepts and Beliefs . 102 Majid Turmusani 6 Bio-Medical versus Indigenous Approaches to Disability . 114 Sophie Kasonde-Ng’andou The Use of Non-Western Approaches for Special Education in the Western World. A Cross-Cultural Approach . 122 Friedrich Albrecht Concepts of Disability with Regard to Migrants Meanings of Disability for Culturally Diverse and Immigrant Families of Children with Disabilities . 135 Maya Kalyanpur Social Welfare or Socio-Political Entitlement: Disabled People Caught between the Poles of Their Tunisian Origin and Acculturative Pressures . 146 Mustapha Ouertani The Problem of Special-Educational Advancement of Children from Migrant Families – Integrative Help in the Regular Schools to Prevent Multiple Processes of Social Separation . 154 Kerstin Merz-Atalik Disability and Knowledge Transfer in the Field of Development Cooperation Local Knowledge and International Collaboration in Disability Programs . 169 Patrick J. Devlieger Possibilities for Working with Cultural Knowledge in the Rehabilitation of Mine Victims in Luena, Angola . 178 Ulrich Tietze Socio-Cultural Representation of Disability in Target Groups of Rehabilitation Work: Examples from Handicap International Projects . 192 Francois DeKeersmaeker 7 Incorporation of Knowledge of Social and Cultural Factors in the Practice of Rehabilitation Projects . 199 Dee Burck The Importance of Cultural Context in Training for CBR and Other Community Disability Services . 208 Sheila Wirz Western(ised) Personnel from the Practice of Rehabilitation Projects versus Local Cultures . 222 Harry Finkenflügel Differing Perceptions of the Principle of Parent Participation: Implications for Asian Families of Children with Disabilities . 234 Maya Kalyanpur Formal Handling Routines. Child Rearing Practices in Jamaica and Their Relevance to Rehabilitation Work . 242 Annette van der Putten “Nothing about us without us.” Case Studies of Self-Help Movements Meeting Women’s Needs. Women and Girls with Disabilities in the Practice of Rehabilitation Projects . 251 Jenny Kern “We don’t need to be cured first in order to live”: Self-Help in Oaxaca, Mexico (An Account of an Interviw with German Perez Cruz) . 268 Brigitte Holzer The Pan-African Movement of People with Disabilities . 274 Joshua T. Malinga Self-Determined Living in Germany . 277 Ottmar Miles-Paul 8 Towards New Approaches in the Study of Disability in an Intercultural Framework General Issues in Research on Local Concepts and Beliefs about Disability . 285 Nora Ellen Groce Developing Local Concepts of Disability: Cultural Theory and Research Prospects . 297 Patrick J. Devlieger Towards a Methodology for Dis-ability Research among Ethno-Cultural Minorities . 303 Parin Dossa Disability Research in Cultural Contexts: Beyond Methods and Techniques . 314 Kofi Marfo Some Thoughts on Definitions and a Methodology of Cross-Cultural Research Pertaining to Disability . 323 Arthur Vreede Issues of Disability Assessment in War Zones . 332 William Boyce, Seddiq Weera The Participatory Rapid Appraisal Method of Research on Cultural Representations of Disability in Jordan . 343 Majid Turmusani Using Historical Anthropology to Think Disability . 352 Henri Jacques Stiker Authors . 381 9 Introduction Brigitte Holzer, Arthur Vreede, Gabriele Weigt There are at least three good reasons for publishing a reader on the topic of Disability in Different Cultures. The first is of a practical nature: this book is a collection of virtually all the contributions presented and discussed at the symposium Local Concepts and Beliefs about Disability in Different Cultures (21st to 24th May 1998 at the Gustav-Stresemann- Institut e.V. in Bonn, Germany). Here, people with disabilities from both North and South met with special education professionals, people working in development cooperation organisations and students and academics from different disciplines concerned with disability, and started a dialogue which is, we trust, reflected in this reader. It is the editors’ hope that this dialogue, which was at most merely initiated at the symposium, can and will be continued in greater depth on the basis of this collection. The reader has the further aim of carrying the dialogue beyond the restricted circle of symposium participants and making it accessible and comprehensible to a wider public. The second reason for the publication of this book relates to the experiences of many of those engaged in development cooperation and working in NGOs, experiences which represented an important impetus for organising the symposium and which, correspondingly, constituted the central topic of both plenary sessions and working groups. Disability and Culture is an essential issue in development cooperation. On the one hand, disabilities, whether physical, mental or emotional, can be seen as parameters for the structural disadvantaging and deficits of the countries with so-called catching-up development. They are very frequently the results of hunger, malnutrition and wars (cf. the contributions by Tietze, DeKeersmaeker and Boyce/Weera in this volume). Thus NGOs are confronted with the issue of disability, no matter what social and economic areas they are concerned with. On the other hand project planners – advisors, health educators and other socially engaged indivi- duals – find again and again that their work cannot achieve the intended 10 Introduction results, is unsuccessful, is avoided or even completely rejected by the people affected, or that support for a particular person ends in personal disaster, because the target group attributes different meanings to disability from the planners. This can be illustrated by the example of the Cambodian mine victim who was fitted with a prosthesis in an NGO aid programme. Some days later, the man was seen begging at the roadside, minus prosthesis. When asked why he was not wearing it, he replied: Your prostheses can’t feed me (Tietze in this collection, see also the contributions by Kalyanpur and Groce). One of the aims of the reader is, therefore, to create an awareness of the gaps in our knowledge when it comes to the framework of spiritual, cultural and socio-economic condi- tions which affect the issue of disability in different societies, and at the same time an awareness of how to reduce this gap, or rather, how difficult it is to acquire the appropriate knowledge. The third reason for addressing the issue of Disability and Culture is the most wide-reaching, even if it is the least evident at first glance, and relates to the emancipatory potential of the topic. In exploring the wide variety of local concepts of and different ideas and beliefs about disabili- ty, it becomes strikingly clear just how differently a disability may be judged. In this light, disability can no longer be perceived as a physical, psychological or mental characteristic which a person is born with or has acquired in the course of her or his life. On the contrary, it becomes