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Disability and Rehabilitation: an Ethnography of the “Center for the Rehabilitation of the Paralyzed” in Bangladesh Essay

WATER FOOD DIABETES AYURVEDA GENETICS POVERTY YOGA STDS HISTORY SEX SOCIETY FAMILY PLANNING CASTE GENDER RIOTS RELIGION HEALTH DEMOCRACY FLOODING WASTE-MANAGEMENT UNANI PSYCHOLOGY FOLK MEDICINE AFFIRMATIVE ACTION GLOBALISATION BIOCHEMISTRY OLD AGE REPRODUCTIVE HEALTH MALARIA POLICY HIV AIDS WHO MEDICOSCAPES COLONIALISM PHARMACY RELIGION LEPROSY BOTOX DEHYDRATION NGOs AYUSH… Disability and Rehabilitation: An Ethnography of the “Center for the Rehabilitation of the Paralyzed” in Bangladesh by Farjina Malek Health and Society in South Asia Series, no. edited by William Sax, Gabriele Alex and Constanze Weigl ISSN 2190-4294 Disability and Rehabilitation: An Ethnography of the ‘Center for the Rehabilitation of the Paralyzed’ in Bangladesh. Master Thesis in partial fulfillment for the award of a Master of Arts degree in Health and Society in South Asia at Heidelberg University 26th February, 2010 Submitted by Farjina Malek Supervisors: Dr. Gabriele Alex Prof. Dr. William S. Sax Name, first name – Malek, Farjina DECLARATION For submission to the Examination Committee

Regarding my Master’s Thesis with the title: Disability and Rehabilitation: An Ethnography of the ‘Center for the Rehabilitation of the Paralyzed’ in Bangladesh. I declare that 1) it is the result of independent investigation 2) it has not been currently nor previously submitted for any other degree, 3) I haven’t used other sources as the ones mentioned in the bibliography. Where my work is indebted to the work of others, I have made acknowledgement. Heidelberg, 26. 02. 10 (Candidate’s signature) Acknowledgment

I would like to express my heartfelt gratitude to all those who helped me to complete this thesis. I am deeply obliged to my supervisors Prof. Dr. William S. Sax and Dr. Gabriele Alex for their assistance and valuable suggestions. Also I would like to thank Constanze Weigl for helping me from the beginning to the end of my thesis. I want to thank all the members of CRP for their logistic supports during my fieldwork. My deepest thanks would go to the patients and staff of half way hostel at CRP; particularly to Aminul, Lokman and Rakib Vai.

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My deepest appreciation to all my friends and classmates of Masters of Arts in Health and Society in South Asia (MAHASSA); especially to Gen. She edited my thesis proposal. For editing the whole thesis, I would like to thank to my three friends name Mohi, Ratul and Munif. They did a wonderful job by reading and correcting my grammars. I would also like to thank everybody who was important for this thesis, as well as expressing my apology that I could not mention personally one by one. I am deeply indebted to my husband Labib for his continues support in my work.

He is a great inspiration for my work. Table of Content a) Declaration b) Acknowledgement c) Table of contents ———————————————————–i-ii d) Abstract ———————————————————————-iii-iv 1. Chapter One: Introduction 1. 0 Introduction ———————————————————————– 1 1. 1 Research Objectives ————————————————————– 1 1. 2 Preliminary Work on the Research Topic ————————————- 2 1. Literature review and the rationalization of the study ———————- 3-10 1. 4 Chapter plan of the study —————————————————– 10-11 2. Chapter Two: Data Sources and Data Collection Methods 2. 0 Introduction ———————————————————————– 12 2. 1 My field ————————————————————————– 12-15 2. 2 Entering to the field ————————————————————— 15 2. 3 Data collection technique —————————————————— 16-20 2. The limitation and the advantage of my field ——————————- 20-21 2. 5 Sample size and time frame —————————————————— 22 2. 6 Ethical considerations ————————————————————- 22 2. 7 Conclusion ————————————————————————— 23 3. Chapter Three: Daily Life in CRP; Living with Disability 3. 0 Introduction ————————————————————————– 24 3. Expression of Pain ————————————————————— 24-26 3. 2 Everyday Recreation in CRP: Entertainment and fun ———————- 26- 29 3. 3 Gender and Disability ———————————————————– 30- 31 i 3. 4 Emotional Desire ————————————————————- 31-32 3. 5 Conclusion ———————————————————————— 32 4. Chapter Four: Disability in the Half Way Hostel 4. 0 Introduction: ———————————————————————– 33 4. The care giver at half way hostel ———————————————33-34 4. 2 Disability in discussion and the encounters ———————————35- 36 4. 3 Expression of Pain and Language to indicate the disabilities ———— 36- 37 4. 4 Outing and Cultural Program: the formal entertainment of CRP——— 37- 38 4. 5 Occupational therapy and the occupation of the patients ——————– 38 4. 6 Conclusion ———————————————————————– 38- 39 5.

Conclusion: Chapter Five: Conclusion 5. 0 Discussion ———————————————————————— 40-43 5. 1 Conclusion ———————————————————————— 43-44 Bibliography————————————————————————– 45-48 ii Abstract: In my research, I engaged in an ethnographic study at the Center for the Rehabilitation of the Paralyzed (CRP), Bangladesh, where the daily life of the disabled people and their experiences of their situation was my main focus.

I evaluated their physical and mental situation by the language used by the patients, their relatives and the therapists and staff at CRP. Here language refers the representation of the physical condition (what is the synonyms and antonyms they use to indicate disabilities), and the way that patients, relative and doctors relate disability both formally and informally. My research question is ‘what is the cultural shape of disability at half way hostel of CRP’? CRP is a huge area to cover, I therefore have chosen one part of CRP and that is the ‘Half Way Hostel’.

This is the patients’ pre-discharged hostel. As a data collection technique, I used participant observation. I got myself involved in their daily activities. I took part as well as observed their daily life. In addition, I took interviews and daily notes. The thesis is divided in five chapters; the first chapter’s aims were to introduce the argument, research question and then discuss different relevant literature. My argument is ‘each and every culture has its own way of understanding disability. One should not consider disability from the universal point of view’.

From this argument, my research question is, ‘what is the cultural shape of disability at half way hostel of CRP, Bangladesh? ’ In the same chapter, I have also discussed how disability has been discussed in different time and literature. The second chapter is based on the description of the field and the data collection methods. In this chapter, I described my field; mainly the physical infrastructure of CRP, I discussed the method I have used as well as the limitations and advantage of those methods and I discussed my field experiences.

As a volunteer, I got an easy access to my field; which was a plus point. On the other hand, for the same reason, my informants always kept a distance with me. It was a challenge for me to overcome the distance. The third chapter has focused on different events in CRP. These events have taken place at half way hostel in different time where the fun, frustration, every day conflict, love and joy of disabled people and their relatives is pictured. This chapter also focused some patients’ case study, which is iii elpful to understand the events as well as the patients’ background. My forth chapter is the description of deferent points, where the holistic scenario of disability in half way hostel has been described. Apart of the patients, the other actors of half way hostel are more focused in this chapter. These other actors are the relatives of the patients, the discussants of the half way hostel, the therapists, the care giver of half way hostel and the other facilitator of the half way hostel. The concluding chapter of this study is based on the discussion of the study.

The main findings of the study is the conflicts of CRP’s advocacy and patients’ own agency, the fun and frustration of the patients, the daily reaction of the relatives of the patients and also patients’ everyday language. By the whole study, I have shown a culture of half way hostel, where disability plays a very influential role. iv Chapter One: Introduction 1. 0 Introduction: The ‘Disability and Rehabilitation: WHO Action Plan 2006-2011’ notes that 10% of the total world population is physically disabled (WHO 2005: 1). Most of the literatures published by development organizations who work with the disabled quote similar values.

There has recently been established an international convention regarding the human rights of people with disabilities. These two topics – the generalization of disability concept and the universal rights of disabled people, despite the differences in socio-economic conditions – motivated me to study the different cultural shape of disability and associated rehabilitation. My argument is that every disability has its own cultural shape. Moreover in a culture the disability may get different shape with the influences of age, gender, economic situation, and so on.

To prove my argument in my research, I concentrated on, how disability gets its own shape in a small scale situation like half way hostel1 of CRP2. From this perspective, my research question is: ‘What is the cultural shape of disability at half way hostel of CRP? And how the different actors act to construct this cultural shape? ’ The subjects of my research, whom I refer to as actors, are comprised of CRP patients, the relatives of patients, the doctors, nurses, and other staff who work at the CRP, and others who are either in direct or indirect contact with the CRP. . 1 Research Objectives: The cultural shape of disability at the CRP is the central focus of my research. In this context, I want to know how disability is encountered by different actors at the half way hostel of CRP. This research is focused on the understanding of how patients, therapists, workers, and relatives of patients at the CRP interact with the After getting treatment patients used to stay in half way hostel for two weeks. Here patients learn to take therapy independently; they learn how to cope with their community in a new physical condition. CRP is a national NGO of Bangladesh founded in 1979. This NGO is focused on spinal cord injured patients. CRP treats the patients as well as works for their rehabilitation in the community. 1 1 Chapter One: Introduction greater society and among themselves, as well as the role that disability and rehabilitation plays in their daily lives. In order to address my central research question, I investigated several sub questions: • What is the daily routine of a disable person and his care giver at the half way hostel of CRP? How do the patients relate their physical condition by their verbal language as well as their body languages both in formal discussion and in informal discussion or chatting. • • How do the relatives of the patients describe the patient’s situation? What are the differences among those disabled based on their gender, age and economic condition? 1. 2 Preliminary Work on the Research Topic: My first university3 is about 3 kilometers away from CRP. I personally first sought assistance from the CRP for back pain in 2003.

As an outpatient, I had to go there several times. There were many things that interested me about the organization. First of all, they have many workers there who are physically disabled themselves, especially the people who work at the cash counter. Later, I found a shop in the CRP compound where they sell many crafts made by the disabled in-patients. The goods of the shop really impressed me, and I wanted to know about their makers; I came to know that most of them live in the compound. As an out-patient, I knew only a small area of the much larger ground.

I returned to CRP in 2006 for a severe problem with my leg (I fell down and suffered a torn ligament). I came regularly to the CRP for several days and I came to know some of the patients more closely in this time. I became interested in their lives, their perceptions of their bodily constitutions, and so on. My first university is Jahangirnagar University, which is in Savar, Dhaka. I did my bachelor and masters degree in ‘Geography and Environment’ in that university. That is why, I stayed there for 6 years from 2002 to 2008. 3 2

Chapter One: Introduction In 2008, I came to Heidelberg for my MA in Medical Anthropology. As a part of our study, we visited various UN organizations in Geneva, Switzerland in April, 2009. Autonomously, I sought out Handicap International and spoke with a few members of that organization. I also went to the CBR (Community Based Rehabilitation) Project of the WHO. This study excursion increased my interest in the lay perspective of disability because I found the agendas and work policies of these two organizations to be very grounded in universality.

These organizations function holistically on a single concept of disability for all different cultures and apply the same policies for disabled people all over the world. There is not even a differentiation in prescribed rehabilitation process for different cultures. I am very interested in how a universal idea can work in a local setting. To meet my interest, I sifted through different kinds of literature, to include books, articles and many reports of the organizations who work with disability issues. This literature review is a fundamental part of my preliminary work for my field research. 1. Literature review and the rationalization of the study: My research is focused on how the concepts of disability are encountered in different contexts, both of which need defining the terms. Defining ‘disability’ is problem because of its intricacy and multidimensionality. As a result, a global definition of disability that fits all contexts, though desirable, is nearly impossible in reality (Slater et al. 1974). Both scholars and different (national and international) organizations try to define disability with simple statements, theoretical models, classification schemes, and even through different forms of measurements.

Altman observed that ‘‘there is no neutral language with which to discuss disability, and yet the tainted language itself and the categories used influence the definition of the problem” (Altman 2000:97). He also argues that defining disability has ‘‘contributed to the confusion and misuse of disability terms and definitions, particularly when operationalized measures of disabilities are interpreted and used as definitions” (Altman 2000: 96). However, the concept 3 Chapter One: Introduction f disability covers its definitions, the role of the ‘experts’ (leaders in different organizations who are working with disabled people), the place of experience, and the nature of local politics at that time. Altman argues that ‘‘when trying to make sense of this variety of ideas and forms, it is necessary to take consideration the structure, orientation, and source of the definition” (Altman 2000: 96). Therefore, clarifying the variety of definitions, analyzing their sources and understanding their conceptual strengths and weaknesses in different contexts are the three objectives of y literature review. There are four basic historical categories of attributes toward disability: the individual model of disability, the environmental model of disability, the social model of disability, and the model of the interaction between the individual and social concepts of disability. In the individual model, disability was systematically identified as a characteristic of the individual person (Fougeyrollas and Beauregard 2000). Due to the functional difference of his body, it was the responsibility of that person to overcome any obstacle that he encountered.

Any person with significant impairment was labeled handicapped or disabled, resulting in social exclusion and stigmatization. This conception of disability has progressively changed since the 1960s, when several people questioned this reductionist representation of disability; these voices led to the emergence of the disability rights movement (Fougeyrollas and Beauregard 2000). Despite much advancement, there is no consensus as to the determining factors of disability, notably with regard to the environment (the second model), even today.

In fact, it would be more accurate to say that there is consensus on the importance of the environment but disagreement on the exact role that factor plays. On the one hand, there is a social model that attributes disability entirely to the environment, ignoring the factors related to the person. On the other hand, there is the biomedical model that mainly focuses on the person and resists consideration of environmental factors.

This resistance is notably manifested within the scope of the ICIDH-1 (International Classification of Impairment, Disabilities, and Handicaps) published by the WHO (World Health Organization) 4 Chapter One: Introduction in 1980. The ICIDH-1 conceptual framework is based on the trilogy of body, person, and society (WHO, 1980). The ICIDH-1 model presents a cause-effect relationship between impairment, disability, and handicap. In this model, disease or disorder is shown as intrinsic and causing of impairment, which ultimately results in disability.

Finally, both disability and impairment can be causes of handicaps. In the social model, impairment is considered to be an ‘exteriorized’ situation, disability is an ‘objectified’ situation, and handicap is a ‘social’ situation. Thus, an injury that leads to the impairment of an organ’s functions and structures, which then leads to a disability in the person’s behavior and activities, ultimately generates one or many handicaps or disadvantages concerning social or survival roles.

Since the dissemination of the ICIDH and its experiment application within diverse fields of study, the problems identified, the critiques, and the adaptation to the conceptual model and classification manual have stimulated for the search for knowledge: “the most passionate debate is related to the critique of the linearity of the ICIDH model and the work that attempt to explicitly introduce the systematic approach and environmental dimension into the conceptual model” (Fougeyrollas and Beauregard 2000: 176).

The modifications brought forth by these emergent conceptual models aim to illustrate the person-environment relationship in the construction or prevention of ‘handicap’. Thus in 1992, Minaire proposed his concept of the ‘situational handicap’, defined as the result of the confrontation between the functional disability presented by an individual and the situation encountered in daily life (Minaire 1992). In that time, he published an improved version of the conceptual model, explicitly integrating diverse categories of environmental aspects analyzed in terms of situation.

According to Minaire (1992), environmental aspects are both social and physical dimensions that determine a society’s organizations and context. In physical factors, he mentioned nature and the development of a society. Here, nature is defined as the physical geography, climate, time, sound, etc. , and development is manifested in the architecture, technology, and national and regional 5 Chapter One: Introduction advancement. Minaire (1992) also broke social factors into in two parts: one is the politico-economic factors and socio-cultural factors.

Politico-economic factors are comprised of government systems, judicial systems, economic systems, health systems, etc. , and socio-cultural systems mean social rules, norms, and social networks. Minaire (1992) specified that one is handicapped not in the absolute but with the reference to something. In his opinion, the situational handicaps model completes the dimensions of the WHO model by integrating the person within his/her environment (Minaire 1992). Thus, a handicap is a characteristic not of the person but of the interaction between the person and his environment. In this way, Minaire refutes the linearity of the WHO classification.

Following Minaire, several authors: notably Badley (1987), Chamie (1989), and Hamonet (1990) elaborated upon conceptual models that integrated the concept of environment as a determining factor in the disablement process. The ICIDH-1 was published during a period that also a witnessed the International Year of Disabled Persons, (proclaimed in 1981 by the United Nations) and the Decade of Disabled Persons, which ended in 1992. This period was characterized be the preparation, adoption and application of policies and legislative measures aiming to promote and ensure the exercise of the rights of disabled people (UN 1983).

Despite its innovative conception at the beginning of the 1970s, with the introduction of the social concepts of handicap to the biomedically oriented WHO, the ICIDH and its conceptual framework failed to become the international reference tool for persons with disabilities (Barry 1989). A worldwide disability movement, Disabled People’s International (DPI), rejected the ICIDH-1 definitions in 1981 and adopted definitions that are known as those of the ‘Social Model of Disability’ (Oliver 1996).

According to this model, disability is exclusively caused by the presence of barriers within the environment and occurs because the environment does not succeed in adapting to the needs of people who have certain impairments. To improve the life situation of the people with disabilities, one must remove the environmental factors that create obstacles to their integration; the model pays little interest to their organic and functional 6 Chapter One: Introduction differences (Enns 1989; Hurst 1993). The DPI defines impairment and disability as follows: “Impairment is the functional limitation with the ndividual caused by physical, mental and sensory impairment. Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers” (DPI 1982: 3). Within a political paradigm, the social model has insisted that there is no causal relationship between disability and impairment. The achievement of the disability movement has been to break the link between bodies and social situations and to focus on the real cause of disability: Discrimination and prejudice (Shakespeare and Watson 1997).

The concept of equalization of opportunities, meaning the process by which society is modified to become accessible for people with disabilities, is putting the social model into action; it was first used in a United Nations document, Decade of Disabled Persons 1983-1992: World Program of Action Concerning Disabled Persons (UN 1983). These radical changes in the early 1980s were largely the result of a partnership between the disability movement and various governments (e. g.

Canada and Sweden), who adopted the new principle of participation. This new outlook of disability has influenced the development of legislation like The Charter of Rights and Freedoms in Canada and The Americans with Disabilities Act (Enns 1998: xii). From this perspective, disability is a political issue. Disability right activists consider that the social environment structurally creates social disadvantages and discriminatory situations experienced by people with disabilities (Driedger 1989; Hahn 1985).

Disability is socially constructed and manifested in situations experienced by environmental barriers and causality is no longer placed within the body and functional limitations but in the systemic inadequacy to adapt to their specific needs and oppression (Oliver 1990). It is important to note that the adoption and application of social policies and legislation ensuring the rights of the basic human rights and equal opportunities constitute modifications of the 7 Chapter One: Introduction environment that have had an obvious impact on the disability and rehabilitation process. The impossibility of monitoring the evolution and mpact of these factors through biomedical and compensation models is centered on an inside-theindividual model of disability. This fact has led numerous government planners and decision-makers to support the movement for the defense of human rights in the critique of the ICIDH and the inclusion of environmental variables for monitoring and measuring the impact of socio-economic policies in the field of rehabilitation, de-institutionalization, and social participation. This change is wellexemplified within the UN standards for the equalization of persons with disabilities (Barry 1995).

Another major criticism of the ICIDH-1 was its lack of conceptual clarity and overlap between the concepts of impairments, disabilities, and handicaps (Nagi 1991). This oversight is mentioned by the Committee on a National Agenda for the Prevention of Disabilities in its report, “Disability in America,” in order to explain the rejection of the ICIDH as a conceptual framework. The committee preferred the concept used by Nagi (1991), wherein the disabling process is made up of four elements: Pathology, impairment, functional limitations, and disability (Pope an Tarlov 1991).

After much criticism, WHO changed the ICIDH-1 model. The introduction of the ICIDH-2 states that, “The overall aim to the ICIDH-2 classification is to provide a unified and standard language and framework for the description of human functioning and disability as an important component of health” (WHO 1999: 7). The classification covers “any disturbance in terms of functional states associated with health conditions at body, individual and social levels” (WHO 1999: 7).

The new draft of the ICIDH-2 proposes three dimensions of the concept of disability: body functions and structure, activities in the individual level, and the participation of the individual in society; it also includes a list of environmental factors. The title of the classification has been changed to ICIDH-2 International Classification of Functioning and Disability (‘functioning’ and ‘disability’ are defined as umbrella terms). 8 Chapter One: Introduction This final conceptual scheme shows that the individual’s health condition disorder or disease) depends on the aforementioned three basic concepts, which are inter-related themselves. These inter-relations again depend on the environmental factors and one’s personal orientation. The body thus has a role in disability at any level of human life (Fougeyrollas and Beauregard 2000). The ICIDH-2 was the result of various influences. It indicates positive change because it recognizes disability within various contexts and cites socio-political and environmental models as essential for counterbalancing the biomedical and economic model based on solely the individual (Bickenbach 1993).

Here, the importance of environmental factors are recognized, but there is resistance to making this a separate and full fourth conceptual dimension. The systematic nature of disability phenomenon is acknowledged, but the explanation is made even more confusing by the proposal of a complex conceptual framework that fails to clearly identify the interaction between the individual and the environment as a central factor.

The importance of the individual was recognized, but as an unclear contextual factor, creating some confusion with regard to environmental factors (Fougeyrollas and Beauregard 2000). In 2006, Tom Shakespeare published his book entitled ‘Disability Right and Wrong’, wherein he critiqued the ICIDH-2 social model. He thinks that, ‘‘[social model] approaches reject an individualist understanding of disability, and to different extents locate the disabled person in a broader context” (Shakespeare 2006: 9). This social model has also been counterposed to the medical model, a limitation of the former.

Shakespeare (2006) stresses three points in order to understand disability and the rehabilitation processes of disability: Social and environmental barriers, the individual concept and sufferings, and the medicalization of disability. To understand the perception of disability and rehabilitation of a particular area, it is important to know the local culture and social settings, the disabled person’s concepts, the treatment procedure for disabled person, and the political systems regarding disabled. 9 Chapter One: Introduction

In this context of disability study, I want to focus on a particular institution, which is working with disability. I want to examine their understanding about disability and review this understanding with the aforementioned models. However, in my research, I do not take disability as a universally define phenomena, rather the local cultural understandings of disability is important. Therefore, this research is to compare the different models to CRP’s experiences of disability, arguing that culture plays a role to construct the idea of disability. 1. 4 Chapter plan of the study: This chapter describes the overall idea of the study.

The argument of the study is ‘every disability has its own cultural shape’. To prove this argument this research selected a small scale area name ‘half way hostel’ the pre-discharged hostel of CRP, Bangladesh. After getting treatment patient come and stay in half way hostel for two weeks to learn therapy and other works, those are important and appropriate for their physical condition. They create a temporary territory there, which have a unique cultural shape. This study is an ethnographic description of that culture, where the disability plays a vital role to give a shape of that culture.

Apart of this chapter, this study has four more chapters. The second chapter is focused on the description of field and methodology. I collected information by observing and participating in the daily life of half way hostel, which is my field. This chapter is a description of the experience of entering to the field, the advantage and limitation of my field. At the same time, this chapter conveys the gap within the planned methodology (what was in my mind before going to the field) and the methods, what I used in my field.

Third chapter is based on the daily events at my field. The aim of this chapter

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