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

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 CommitteeRegarding 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) AcknowledgmentI 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.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 2Chapter 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 https://www.essaywritingdiscounts.com/custom-essay-discount-code 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: IntroductionIn 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 is to get the picture of the culture of half way hostel through the daily life activities. The argument of this chapter is, with the influences of different kind of people; like patients, relatives, doctors, and therapists, half way hostel got a unique 10 Chapter One: Introduction culture. Moreover, this unique culture is always changing due to the age, gander, and socio-economic variation of these actors.The forth chapter is more focused on the particular issues in half way hostel; for instance, discussion that take place there, type of care giver of the patients, outing and gardening for the patients and so on. The aim of this chapter is to show the contradiction between CRP’s discipline and patients’ self agency. Finally the fifth chapter is the conclusion of the study. This chapter has drawn the conclusion by showing the contradiction between different models of disability and the scenario of disability at half way hostel. 11 Chapter Two: Data Sources and Data Collection MethodsChapter Two: Data Sources and Data Collection Methods 2. 0 Introduction: In my methodology section, I will first describe my field, which will not only cover the geographical location of my field, but also my informant types, the events that take place in my field, and my experience to enter the field. Then, I will discuss which methods I used to collect the necessary data, the sample size & time frame. At last I will stress on my ethical position at the field. 2. 1 My field: I knew CRP before as a patient1. CRP has its several centers for treating and rehabilitating of paralyzed patients in Bangladesh.CRP's headquarters are in Savar, approximately 25km far from Dhaka, the capital city of Bangladesh. This headquarter was my field. There are several buildings and facilities in that compound (100-bed hospital, Operation theatre, Physiotherapy Department for in-patients and out-patients, halfway hostel where patients prepare for returning to their home communities, vocational training centers, etc. ). I had a limited idea of CRP from my past visits at CRP and CRP’s website. However, when I went to CRP for my field work, I was checked by the security. They asked me, where I wanted to go. I want to meet with Mizan Vai (Mizanur Rahman is the volunteer coordinator of CRP)’ I replied. Security asked quickly, ‘which Mizan? Wheelchair-Mizan? Or Crutch Mizan? ’ It was clear to me that both of the Mizans are disabled. I replied that I was looking for the volunteer coordinator and I did not see him before. Two guards discussed together and suggested me to go to BHPI (Bangladesh Health Professionals Institute) building to find out I have been living in Jahangir Nagar University campus from 2002 to 2008 for my bachelor and masters. This university is about 3km far away from CRP.I first went CRP for my back pain in 2003. I had to go several time there for that reason. 1 12 Chapter Two: Data Sources and Data Collection Methods ‘wheelchair-Mizan’. I passed the gate and then the out-patients area. There were around 25 out-patients in that big hall room. The two side of that hall room were open and other two sides were closed by the Doctors room. I saw one young girl was howling in pain. She fall down from the tree just an hour ago and got hurt in the back. Her father was busy to fill up the appointment form and they are waiting for the doctor. I passed them to meet with Mizan Vai.I went to the Speech and Language Therapy Department in BHPI. Mizan Vai is the lecturer of that department and the volunteer coordinator of CRP. He told me that CRP offers nine courses in BHPI; bachelor degree In Physiotherapy, Occupational Therapy, Speech and Language Therapy, Nursing Diploma and also some other diploma and assistance courses. There is no ramp in BHPI building; however Mizan Vai has the ability to use the stairs with his hands and knees. He got another wheelchair in the ground floor. We went together to the main administrative building to fill up my volunteer form.The administrative building was situated directly opposite to the BHPI building. In the main administrative area, we got a ramp. I filled up the form and then we moved around CRP; the In-patients area, the clinical physiotherapy, occupational therapy and speech & language therapy department, half way hostel, vocational training centre, staff quarter, inclusive school and the big hall room name Redda Way Hall. For my field work, I choose the half way hostel. I knew the concept of half way hostel before from the website of CRP. I showed my interest to work there. I got an ntroduction of half way hostel and started to work there. There were twenty beds for the patients, one office room, three toilets, one tube-well, one office room and one hall room in the half way hostel. Three permanent staff work there; a physiotherapist, an occupational therapist and a caretaker. Most of the other works are done by the other staff of CRP; for instance, in discussion period one councilor come and then goes back to his own work or in individual therapy’s time one or two physiotherapists come and after the session they go back to their previous work.Patients come in the half way hostel after getting treatment as in-patients. The concept of half way hostel is to make patients more independent. Patients learn here how to take therapy, how to cope off with their old environment, how to do daily work more independently. This hostel runs by its 13 Chapter Two: Data Sources and Data Collection Methods daily routine. Every day from 8 am to 8. 50 am they have group therapy. The patients and the therapists select a group leader from the patients. The leader has to know the therapy. They have Physiotherapy for every parts of the body.After 10 minutes break, discussant from different departments like social welfare or vocational training institute, come and discuss with the patients on three days in a week. In every Saturday, the patients got the idea of half way hostel and the other three days (Sunday, Tuesday and Thursday) they discuss on various topics, such as hygiene, pressure sore, the home environment, use of wheelchair, future profession, and social relationship. Monday and Wednesday are days for gardening. Patients do gardening under the supervision of the staff of half way hostel.Though in rainy season, they have to pass their time inside the hall room. After one hour of discussion or gardening patients start to do the individual therapy. If any patient requires special kind of therapy they can learn that in this period. The care givers of the patients also learn how to give therapy in this time. At 12 pm patients go to the vocational training centre. CRP offer six types of vocational training; tailoring, computer training, electronics servicing, shop keeping, and painting training. In the half way hostel the most training is the shop keeping.A person without one leg and one hand runs this training. I did find this training is too much effective. I saw the trainees were dissatisfied with the training. I asked one trainee, who is a member of half way hostel about the training. He told me ‘look sister, I have to laugh with the customer and I will be well-mannered to them; this is not a matter of learning rather this is a matter of common sense. ’ I got only four patients out of twenty who were regular in the vocational training on that particular time. The patients, who don’t attend in the vocational training, have to go to the Redda way hall of CRP.Every day from 12pm to 1pm, patients work to produce the package and the bandage for CRP’s internal necessities. Then, they get the launch break for one and half hour. They come back at 2. 30 pm from their break. In different days of the week, patients get different work on that time. On every Saturday there is a cultural program, In-door games on Sunday and Tuesday, film show on every Wednesday and Monday is for discussion. CRP has three selected film for the half way hostel’s patients; Radio Vai (Radio brother), Bihongo (The birds) and Wheel Chair.All the 14 Chapter Two: Data Sources and Data Collection Methods films are produced by CRP. After this cultural program session, patients go to the ‘wheel chair skill’ for half an hour. For this ‘wheel chair skill’ training CRP made an intricate ground. With Three trainer wheel chair users go through the ground. Before going back to the hostel, patients join in the outdoor sports for an hour. As a volunteer, I maintained the office time of CRP. From Saturday to Wednesday, I had to stay in half way hostel from 8am to 5pm and on Thursday 8am to 1. 30 pm.Very often I stayed after 5pm to collect more data in their chatting time. 2. 2 Entering to the field: I entered to my field as a volunteer. Many Anthropologists face the problem to enter to the field. Dr. Shahaduzzaman did his hospital ethnography in a Bangladeshi hospital (Zaman, 2005). He got a huge problem to omit his identity as a doctor. At the same time, he was not like a patient. As a result, in the beginning it was a challenge for him to gain the faith from his informants (Zaman, 2005). I did not have this kind of problem to enter in the field.CRP always recruits a good number of volunteers. Like the other volunteers, I did not get attention from the staff and patients. However, as a volunteer, I had to do many things which are not directly related to my research topic; for instance, maintaining the attendance of the patient’s daily activities, counseling the patients, helping them in the extra curriculum activities and so on. In the beginning, I thought these duties are not relevant with my thesis. Later I discovered that irrelevant activities are very important to get a clear picture of my field.By doing these kind of works, I got a high status to the patients, in one hand which is good. I did not have any problem to collect the data; patients and their relatives were eager to give me information. On the other hand, they always behaved formally with me, which was a disadvantage for my field work. It took couple of days to break this formal relationship. 15 Chapter Two: Data Sources and Data Collection Methods 2. 3 Data collection technique: Participant observation was the fundamental method of my research: I was in the field as a volunteer for two months.I stayed in the CRP hostel, which is inside CRP premises. As a result I frequently visited half way hostel even after office time. I tried to participate in their daily life. However, the concept ‘participant observation’ broad itself; Singha (1993) mentioned four possible roles for a participant observer: 1) a complete participant, 2) participant as observer, 3) observer as participant 4) a complete observer. As a volunteer, I was not able to be a complete participant, as I could not completely involve myself in the daily lives of the patients.Thus, I will not be a complete observer either. My plan was to fall into the second and third categories: I was a participant as an observer and at the same time an observer as a participant. However, many anthropologists even doubt the term ‘participant observation’. Geest and Sarkodie wrote that, “participant observation is not an easy thing to do, or to be more precise, it is impossible. Participant observation is a dream, an ideal, and a contradiction in term” (Geest and Sarkodie 1998: 1373).Therefore, I observed daily life at CRP through my work and through building an informal relationship with my informants on the site. I have used many different methods to collect the qualitative and quantitative data to supplement my participant observation. For the convenience of data collection, I have divided the information into three categories: place (the half way hostel), people (the patients, staff and the relatives of the patients) and events (the daily life of the hostel). For the place part, I have collected both quantitative and qualitative data.With regard to the people, my focus was on the qualitative data gathered from the patients, their relatives and the people who work there. Here, I have used different tools; In-depth interviews, case studies, mind- map, observation, Semi- structured interviews, and conversation. For the third part of my data, I gathered primarily quantitative information on the daily schedules and events at CRP and then descriptive information on each and every event of half way hostel at CRP. The following tables and the explanation, shows detail of the 16Chapter Two: Data Sources and Data Collection Methods information or the data what I need for my research and which method I will use for collecting this information. Table 1: the Place: Half Way Hostel Place Types of information Data collection methods Potential informants/ sources of information CRP Location and history of CRP, existing facilities, staff strength, number of patients, physical environment, building arrangement. Half-way hostel Number of rooms, room arrangement, existence facilities inside the hostel Observation, conversations, secondary source.Members and workers of halfway hostel, relatives of the member Patients’ access area Vocational Training, outdoor sports, nursing service, social welfare unit’s service Observation, semi-structured and in-depth in interviews. In-patients, relatives of inpatients, workers and therapist of CRP Staff rooms Facilities inside the room, the activities that take place in the rooms. Observation, interviews. Therapists, Workers, administrative officers Observation, secondary source and semistructured interview. CRP library, staff of CRP, website of CRP, Local people 7 Chapter Two: Data Sources and Data Collection Methods To get the information on my study place, I mainly used secondary sources. CRP’s publications, website, documentaries on CRP were some of my secondary sources. Apart of these secondary sources, I took interview, observed the facilities and talked informally with all type of people at CRP. Table-2: The people People Patients Types of information Data collection tools interviews, studies/ life Social background, daily activities and In-depth accessed area in CRP, communication case ith the staff, perception about their life, histories, mind- map, views about the center and the observation treatment, Doctors Therapists / Activities of different doctors/ therapist, Observation, interaction with other staff members, structured interaction with the patients, perception in-depth of disability. Staff (excluding doctors therapists) Relatives the patients and conversation Semiinterviews, Semiinterviews, interviews, Activities of different staff; interaction Observation, with the other with staff the member, structured communication patients, conversation, erception about the patients of Relationships with the patients, Observation, case in-depth perceptions about the disease of patient, studies, experience that gathered for having interviews, disabled person in a family, interaction conversation with the CRP’s staff 18 Chapter Two: Data Sources and Data Collection Methods Three kinds of people were my target; first- the patients. I wanted to know how they describe their physical and mental condition. I focused on their language. I tried to observe which words they use for their condition and which words for the opposite condition.I participated in their daily life; I observed their work and their participation in different work at half way hostel. I took 15 interviews to know details about them. I also used mind mapping to understand disabled peoples’ daily accessed area. My plan was to provide them pen and papers and tell them to draw CRP. From their drawing, I thought I could find the accessed area of patients at CRP. The mind mapping idea was not useful for my field because most of the patients could not use the pen and some of them got paralysis in hand so they could not even move their hand.However, all the other methods I used were useful enough. My second target people were the employees, who work for those patients. Each patient evaluates his life with a special concentration, but the employees have to deal with many patients in a day. My interest was to know their feeling on disability; how they describe the condition of a disabled person. I observed them; we discussed together on different issues of the patients and we worked together for the patients. As a result, it was easy for me to get the data from the employees of half way hostel.My final target group was the relatives of the patients. The patients, who cannot move their hands and legs, have to bring their relatives. At the same time other patient’s relatives very often come and rent a home outside CRP. They were also my informants. I talked to them, observed their reaction in the discussion, therapy and the other time. Very often, I participated on their evening gathering time. They discussed on different events of the following day, which was a very important source of my information. 19 Chapter Two: Data Sources and Data Collection MethodsTable 3: The Events Events Types of information Data collection tools Doctor’s/ therapist’s daily round in the half way hostel Admission and discharge of patients Discussion Dressing, distribution of medicine, washing and meals Sports, vocational training, gardening and the other extracurricular activities Interactions and the participations of the patients Procedures, interactions Procedures, interactions Procedures, interactions Observation Observation Observation and conversation Observation and conversation Procedures, interaction ObservationThe information of different events was the most important part of my research. I attended in the regular events of the half way hostel. I saw the patient’s participations in the event, their interaction with the event and their reaction on different matter of that event. In the leisure period, I often asked to the patients and their relatives on a particular event and observed their reaction. Observation and conversation were the main methods to collect the information on the events of half way hostel. 2. 4 The limitation and the advantage of my field: There is a metal and wood workshop behind the half way hostel.CRP makes its wheel chairs, special seats for the patients, and the other metal things in their own metal workshop. The noise of welding machine of that metal workshop made the workshop area and the half way hostel polluted. It was impossible for me to tape the voice inside 20 Chapter Two: Data Sources and Data Collection Methods the half way hostel due to this noise pollution. Often I took my interview outside the half way hostel. Another limitation of my field is that CRP works for the spinal cord injured patients. As a result, I got a particular type of disabled people there. It is indeed a limitation of my work.On the other hand, I could only focus on a specific type of informants. However these patients come at CRP just after their accident. That is why they could not imagine the loneliness of a disabled person in their local community. This is another limitation of my work. I got the informants, who are used to see too many disabled people around them at CRP. Language played a vital role in my thesis. First of all, to understand my informant’s daily speech, I needed to know the local dialect. Though my native language is Bengali, but some of the patients speak in hard dialect which is tough to understand.Moreover, to understand their jokes and silent language, I needed to understand the cultural context of those people. Then the problem rises with the data representation. Many things are easy to understand in Bengali and tough to translate and represent in English. Furthermore, there are many jokes, fun and frustration, which could be translated, but hard to realize the meaning because of the cultural gap. I got many advantages in my field as well. First of all I got many disabled person at a time in one area, which is a big advantage for my fieldwork. Second thing was my residence at CRP’s volunteer guest house.I could stay at half way hostel as long as I wanted as I did not have to worry about the distance between my workplace and residence. At the same time, I stayed there with twenty more volunteers. Many of them came for their study (like research, placement, and internship). I shared many things with them, and we discussed different issues, that discussions were very helpful for getting a clear understanding on the particular issue. 21 Chapter Two: Data Sources and Data Collection Methods 2. 5 Sample size and time frame: Before going to the field, I did not have any sample size as I wanted to do a participant observation.However after my field work I got a number of informants including their different quantitative information, which will be helpful to get an overall idea of those patients (Annex-1). I was in Half Way Hostel for two months (from 1st of August to 1st of October, 2009). During my field work period, I got 62 patients and 35 care giver in the half way hostel. Out of these 62 patients, only 10 were women. I have taken 15 in-depth interviews of the patients and had conversation with all of them. I had also 5 semi-structured interviews with the staff of CRP.Out of 5, three of them were therapists, 2 were assistant of the therapists. 2. 6 Ethical considerations I worked with the paralyzed patients at CRP. Naturally, they are more sophisticated than ‘normal people’ (according to biomedicine), as the greater part of the society discriminates them, even with regard to standard daily movement (lack of wheelchair accessibility to facilities, or in busses, trains, or cars), education (special schools for disabled people are only for secondary level), and jobs (lower education levels mean fewer job opportunities).In my research, ethical consideration is very important because I was working with their daily experience, daily feelings, and daily reaction with the existing facilities. I also worked with the rehabilitation process and its limitations or usefulness from the point of view of the patient. Here, I will be very careful to maintain confidentiality of their information, knowing that if the CRP authorities knew that the patient was dissatisfied and complaining, that result in consequences for the patient himself. I asked all of my informants about their preference for interview methods.I used my tape recorder with their explicit. Finally, I wanted to provide a written and signed statement of confidentiality that I would honor until they personally ratify its content. However, they all gave me the permission to write on their life and to mention their name. 22 Chapter Two: Data Sources and Data Collection Methods 2. 7 Conclusion: The focus of this chapter was to show the field and the data collection technique from the field. My field was half way hostel of CRP (Centre for the Rehabilitation of the Paralysed), Bangladesh. Half way ostel is one of the rehabilitation areas of CRP. Patients come to the half way hostel after completing their treatment from CRP. They stay usually two weeks there. I was in the half way hostel for two months. I participated in their daily life and observed their life. I collected the information by participant observation. To supplement this participant observation I have used many different methods like interviews, mind maps, case studies, and life histories. 23 Chapter Three: Daily life in CRP; Living with Disability Chapter Three: Daily Life in CRP; Living with Disability 3. Introduction In my research question, I have noted that I want to know the cultural shape of disability. This cultural shape of disability can be understood from everyday life of disable person. Disable people express their situation to the care givers; care givers at the same time express their reactions. These reactions and responses are there in the everyday life of half way hostel, which are important to understand cultural shape of disability. In this chapter I will focus on this issue. 3. 1 Expression of Pain: ‘Oh God take me, take me (Allah, tui amare nia ja)’ Ershad was shouting with this sentence.He was the only one patient in that hall room. Most of the patients went to the sports. His wife and me were sitting behind him. His wife is not too old but her face seems older and rude. There were two more patients few minutes ago; Khokon and Mofizur. I was playing chess with them; suddenly Ershad started to cry and his wife was a bit careless. Khokon vai told me ‘look madam, how rude the wife is’. I asked, ‘what happened? ’ ‘Ershad Ershad is a 24years young married man. His home town is in Tangail, which is about 100 km far from Dhaka. He was a farmer. One day he was carying a load of paddy tree.Suddenly he fell down in a rat hole. He got hurt in his neck. His bone in neck broke. Ershad was taken directly to the district hospital and that hospital referred him to CRP. According to the assessment of the therapists, he has to use wheel chair for ever. However, the topography of his area is not plain; the area is full of up and low land. He has a house in a high land and paddy field in a low land. The low land goes under water during the rainy season at least for four months. As a wheel chair person, movement is so difficult for him. Moreover, in the rainy season, it is impossible.On the other hand he took shop keeping training from CRP and wanted to give a shop in the market. When I asked whether it is possible to maintain a shop with this circumstance, he did not give any answer. peed in his lungi (lungi is like a skirt, but mostly the male of south Asia wear it), so his wife behaved rudely with him. Mofizur vai was leaving the room and saying himself, ‘how bad women she is, no respect for husband…’. Khokon Vai react as 24 Chapter Three: Daily life in CRP; Living with Disability well ‘my wife is 100 times better than this woman, I shout a lot, but she never reacts or behave rudely’.However, the wife of Khokon Sharder (32): He is a very talkative man at half way hostel. Before accident, he was a line man of Polly Bitdut (A company for electricity supply). He had to climb electric poles for maintenance purpose. One day he falls from the electric pole and got hurt in back. He took the shop keeping training and wants to build a shop of electronic products back in home. Ershad was careless like before. She was starting to do her task in a rude and quiet way; she changed Ershad’s lungi, cleaned the body, and rubbed the lower part of the body.Aminul vai, the care taker of half way hostel came and tried to make her understand ‘look don’t misbehave with your Mofizur Rahman (22): he was laying under his truck, checking its wheel, all of a sudden the truck started to move. A child had climbed up onto the truck, turned the key and got it moving towards his chest. Thus the truck driver Mozifur Rahman got his chest crushed. After having spent several months at the medical care division of CRP-Savar, Mozifur went back to his home in Khulna division to try to live the life in his wheelchair with his parents, sisters and brothers, wife and his four years old son.He would also try to find out ways to earn living for himself and his family. He would decide whether he would work as a shop keeper or earn money from renting out his parents property. He supposed to go back to his home after couple of weeks at CRP for his vocational training, but he did not leave even after three months. husband, if God wants you might become disabled in a second, who knows what is going to happen with us! ’ The woman replied that they don’t have fan in their room. Her husband could not sleep last night at all and make her awake and after a long sleepless night how could she control her temper.Aminul vai left the room and the women took a seat next to the patient. Then Ershad, the patient, started to cry again. He was splitting repeatedly. Feeling pain in the chest and could not take breath. Some patient’s relatives came by this time; they were suggesting the women to go to the nursing station. The woman was trying to pick him up to the wheel chair, but failed. I hesitated to help her not only because he was dirty but also as a Bangladeshi female it is tough for me to take a man on my arm. There were no male around. At last with the help 25 Chapter Three: Daily life in CRP; Living with Disability f some other women, his wife picked up him on the wheel chair. Ershad was crying and shouting ‘I am dying, I am dying, call my parents, my sister, I am dying. ’ They came back after 20 munities and then the wife was shouting ‘look sister, all blamed me. Now see, he trough out the pill by vomit and again make dirty everything. I will die by cleaning and cleaning. ’ By shouting she was helping her husband to transfer him wheelchair to bed. The patient was shouting at the same time as well, ‘take me to my home, I will die. Call my sister over phone. Tell them to take me home’.Slowly the patients and the therapists came back from the field. One therapist name Lockman asked Ershad, ‘what happened to you? ’ He replied, ‘Sir, please save my life. I am dying. My two legs are burning. Please give me some ice. Lokman vai heard all the events and said to Ershad, ‘if I give you ice you will get a cold then, do you want this? This is very normal to have some pain in this time. ’ The other patients also voted in this regard. Heamayet Fakir, another patient, said ‘you don’t know how much pain I have tolerated every day. You have to adjust with it. Don’t behave like a woman. Ershad’s wife came to me and whispered ‘sister, he got a bad wind. When you get this type of bad wind, you have to suffer three times. Previously, he got injured two times and this is his last time. But this time his neck broke. I came here to treat this broken neck, but now we need to go back to kaviraj (traditional healer in Bangladesh, they mainly use the herbal medicine and very often they recite mantra for the patient’s well being). The kaviraj will give him back the strength of his hands and legs’. I asked ‘why three times of suffering? Why not more or less sufferings? ’ She replied ‘this is the rule’.Her husband kept crying. The therapist came back to him and said ‘is the pain still there? ’ Ershad cried out ‘sir someone is cutting my legs from me’. The therapist moved around to the patients and replied, ‘do you hear the sound of metal workshop, the welding sound? I ordered a pair of leg for you, don’t worry. ’ 3. 2 Everyday Recreation in CRP: Entertainment and fun There is a one hour cultural program in every Saturday at half way hostel. Normally patients get admission on Saturday in every week. Thi


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