Understanding the Mental ill Health – Poverty – Homelessness Nexus in India: Strategies that promote distress alleviation and social inclusion Athena Institute, VU University Amsterdam Thesis Manuscript Vandana Gopikumar August, 2014 The Banyan, Chennai, India 1 Published by: Visual concept and cover design: Photography: Vandana Gopikumar, Chennai, India 2014 All rights reserved. No part of this work may be reproduced by print, photocopy or any other means without written permission of the author. 2 VRIJE UNIVERSITEIT Understanding the Mental ill Health – Poverty – Homelessness Nexus in India: Strategies that promote distress alleviation and social inclusion ACADEMISCH PROEFSCHRIFT door Vandana Gopikumar The Banyan, Chennai, India 3 Promotor: Prof. Dr. J.F.G. Bunders-Aelen Co-promotor: Prof. Dr. S. Parasuraman 4 About this thesis This thesis enquires into the nature of distress experienced by persons with mental health concerns who live in conditions of poverty or homelessness. Having worked and lived with such persons for over two decades through The Banyan, an organization I co-founded, this inquiry is both poignant and significant. Driven by an agenda of understanding and communicating the nature of the complex problems experienced by such persons, this thesis aspires to contribute to a body of knowledge that will help alleviate the suffering of this vulnerable group. Without the users of The Banyan’s services, who shared their insights and experiences so trustingly and freely, this thesis and indeed, much of my learning and work, wouldn’t have been possible: they are my teachers, friends and inspiration. 5 Table of Contents Chapter Page No. Account 8 Chapter 1 – Introduction 11 Chapter 2 – Theoretical concepts 20 Chapter 3 – Research design 42 Part 1: Setting the scene: persistent and complex problems in the 53 mental ill health – poverty – homelessness nexus Chapter 4 – Persistent, complex and unresolved issues in the Indian discourse 54 on mental ill health and homelessness Chapter 5 - The chicken and egg situation: systemic deterrents to fixing 77 persistent problems of homelessness and mental ill health in India Part 2: Responding to challenges through meaningful innovation and 98 cultivation of values amongst human resources. Chapter 6 - Responsive mental health systems: a conceptual framework 99 emerging from The Banyan's experience in Tamil Nadu, India Chapter 7 – Enabling access to mental health care: perspectives from The 114 Banyan experience in India Chapter 8 - The role of non-governmental organisations in community mental 123 health care Chapter 9 - Mimicking family as a therapeutic strategy in promoting recovery 143 from mental illness and building human-resource capabilities Part 3: Understanding the diversity in human rights conceptualization 163 with the mental health discourse: voices of the Indian mental health user Chapter 10 - Human rights in the context of mental health: p erspectives from 164 service users of The Banyan, India Chapter 11 - Mental Illness, Care, and the Bill: A Simplistic Interpretation 181 Part 4: Aligning strategies with diverse sectors and stakeholders : the 192 role of policy, responsible business and education Chapter 12 - Comment on “The Mental Health Act 1987: Quo Vadimus?” 193 Chapter 13 - Challenges of teaching clinically applied anthropology and 199 cultural psychiatry in India: an evolving partnership between a UK university 6 and an Indian NGO Chapter 14 - Making business sense of corporate social responsibility 217 Chapter 15 - Conclusions 230 7 Account Chapters 1-3 introduce the main themes and theoretical concepts of this thesis. Part 1 of the thesis probes deeper into the problems of mental ill health, poverty and homeless in India, while Part 2 captures innovative responses to address the distress, as a result of this nexus. Part 3 attempts to interrogate the understanding of human rights within this context in Chapters 10 and 11 . Part 4 discusses the need for alignment with external stakeholders in Chapters 12-14 . Chapters 4-14 are based on eleven articles that have been published or submitted to peer reviewed journals. Part 1: Setting the scene – Persistent and complex problems in the homelessness – mental ill health – poverty nexus Chapter 4 Gopikumar V., Narasimhan L., Easwaran K., Bunders J., Parasuraman S. (under review) Persistent, complex and unresolved issues in the Indian discourse on mental ill health and homelessness Chapter 5 Gopikumar V., Narasimhan L., Ravi M., Bunders J., (under review) The chicken and egg situation: systemic deterrents to fixing persistent problems of homelessness and mental ill health in India Part 2: Responding to challenges through meaningful innovation and cultivation of values amongst human resources Chapter 6 Gopikumar V., Narasimhan L., Regeer B., Jayakumar V., Bunders J., (under review) Responsive mental health systems: a conceptual framework emerging from The Banyan's experience in Tamil Nadu, India Chapter 7 Gopikumar V., Jayakumar V., Narasimhan L., (2013). Enabling access to mental health care: 8 perspectives from The Banyan experience in India. Commonwealth Health Partnerships Chapter 8 Gopikumar V., Negi E., & Dijkxhoorn M., (2010). The role of non-governmental organizations in community mental health care. Community Mental Health in India, 148-153. Chapter 9 Gopikumar V., Easwaran K., Ravi M., Jude N., Bunders J., (under review) Mimicking family as a therapeutic strategy in promoting recovery from mental illness and building human- resource capabilities. Part 3: Understanding the diversity in human rights conceptualization with the mental health discourse: voices of the Indian mental health user Chapter 10 Narasimhan. L., Gopikumar. V., Sarin A., Regeer B., Bunders J., (under review) Human rights in the context of mental health: perspectives from service users of The Banyan, India Chapter 11 Gopikumar, V., & Parasuraman, S (2013). Mental Illness, care and the Bill . Economic and Political Weekly , 48 (9), 69-73. Part 4: Aligning strategies with diverse sectors and stakeholders: the role of policy, responsible business and education Chapter 12 Gopikumar, V., (2010) Comment on The Mental Health Act 1987: Quo Vadimus? Indian Journal of Medical Ethics , 8 (4), 234-236. Chapter 13 Derges, J., Jain, S., Littlewood, R., Gopikumar, V., Dijkxhoorn, M., & Jadhav,S. (2013) 9 Challenges of teaching clinically applied anthropology and cultural psychiatry in India: an evolving partnership between a UK University and an Indian NGO. Teaching Anthropology , 2(2). Chapter 14 Mor, N., Gopikumar, V., & Venugopal L, R., (2008) Making business sense of corporate social responsibility. Business Standard India , 253 – 270. 10 Chapter 1 Introduction Living with a mood disorder sometimes makes me vulnerable. But what raises deeper existential questions, exposing me to an altogether different level of marginality and pain, is the hardship encountered on account of poverty and homelessness. And yes, being a woman further builds distress. You have to live my life to understand what it means to climb trees in the night and save myself from violation of dignity and body, walk past many men and women in my dishevelled, almost naked state and yet go unnoticed, yearn for food and clean drinking water and not be in a position to access it. Look at you, your bag, your clothes, your diary with plans for the year scribbled – I don’t plan, I don’t hope, I live for the day. Not that I don’t want to, but I simply cannot afford to. I do not enjoy that and many other privileges that many of you take for granted. Life is lived and experienced differently by different people. Although motivations, aspirations and goals vary, almost everyone seeks happiness. Many factors contribute to this state of contentment including the joy derived from relationships, pleasurable activities, work, success, and a sense of meaning. Similarly, health has been evidenced as being critical to both contributing to this state of well-being as well as in being an outcome of well-being. Mental illness undermines many aspects of health, well-being and personal contentment. Mental ill health is distressing even when experienced independently. In combination with poverty and homelessness, its effects are devastating. The quote above from Sita, a client of a non-governmental organization in India, gives some indication of the alienating effect of mental illness in situations of homelessness and poverty. Mental health on the global agenda The World Health Organization (WHO) defines health as a ‘state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’ (WHO, 2001b: 1). Within this framework, mental health assumes enhanced prominence and significance in today’s world. Despite this growing acceptance of the crucial importance of mental health, the global prevalence of mental illness is increasing (Torrey and Miller, 2007). Over the years, causative factors for mental ill health have been studied extensively, originating in discussions centred around the brain and biochemistry, and increasingly expanding to include broader themes of ecological systems, social capital and adversity (De 11 Silva et al, 2007). Despite the raised awareness of poor mental health and its implications in all areas of life, mental disorders and conditions continue to account for 37% of non- communicable diseases (NCDs) in terms of healthy life years lost, and rank worldwide as the leading cause of disability adjusted life years (DALYs) (Bloom et al, 2011). Globally, annual spending on mental health is less than USD2.00 per person per annum and less than USD0.25 per person in low-income countries (WHO, 2011). This low level of funding demonstrates the general lack of intent and urgency given to mental health. At the same time, the serious problems of poverty and inequity are also being addressed inadequately at policy and implementation levels. In this context, the 65 th World Health Assembly in 2012 has called for convergence between the social and health sectors to address mental health issues in a more integrated manner (WHO 2012, Atun et al, 2013, Townsend, 2013). New research is needed to investigate mental ill health and to design effective health systems.