Jun 6, 2005 - If you were born in Bangladesh with medical impairment, it is most likely you were born in poor ..... Rangamati. 9087. 1080. 642. 497 ..... number of those had not attend any schooling were 9221 (73%) from total. 12514 PWD.
The living condition of people with disability in Bangladesh Introduction WHO estimated more than fifteen millions persons with disability live in Bangladesh, constitute about 10% of the total population1. There is total agreement that people with disability (PWD) in Bangladesh are one of the most vulnerable groups in the society. They are the poorest of the poor and their needs and rights are neglected by the mainstream politics and development2. There is no argument that PWD are living in very hard conditions in all levels but the depth of these conditions raise many questions. This research is aiming to address some of those questions. It is easy to explain poverty in Bangladesh. Large numbers of population (about 150 million3) are living in small piece of land without enough resources to satisfy the basic needs of living for all population. With the time, the number of people who live in poverty in Bangladesh have being getting bigger and bigger as a result of the increase of population and the lost of natural resources. Associated with unfair distribution of wealth, political instability, corruption and the weakness of the state’s institutions due that Bangladesh get its independent not for a long time (1971), therefore the poverty has been deepened. To eliminate poverty, Bangladesh has one option that to develop its resources and to redistribute its wealth4 to satisfy the basic needs of all its population. Create new resources which lead to “expanding economic opportunity for poor by stimulating overall growth and by building their assets and increasing the returns on those assets” (Shaffer: 2008: 1) is the only way to “sustained poverty reduction depends on a fast pace of economic growth” (UN: 2009: 7). The battle against poverty in Bangladesh without economic growth cannot be won because simply the available resources are not enough and without redistribution of wealth5, the poverty cannot be eliminated6. The historical experience have
1
According to the Government of Bangladesh, there is no official statistics about people with disability in the country (GOB: 2010: 17) 2 Sue Coe and Lorraine Wapling concluded that despite people with disability among the poorest sections of communities, “active consultation with and inclusion of people with disabilities in mainstream humanitarian and development work is still rare” (Coe: 2010: 880). 3 According to Bangladesh Bureau of Statistics the primary figures of the total Bangladesh population in 2011 censes are 142,319,000 (BBS website on 25/7/2011). Governmental sources, the finance Minister AMA Muhith expected the final figure would be 160,000,000 including 7.5 million Bangladeshi expatriates (The Daily Star, Dhaka, 25/7/2011). 4 In Bangladesh “over 40% of national income goes to the top 15% of the population”(DRWGB: 2009: 1) 5 One of ADB conclusion about the economic development in Bangladesh was; “the pursuit pro-poor growth in Bangladesh should follow a process in which growth is accompanied by public policies and
Page 1 of 52
confirmed, “Countries with equal distribution of assists and income can grow faster than countries with a higher degree of inequality” (UN: 2009: 7).The issues of wealth distribution are getting more attention by the international community and the international financial institutions. On 2002, the World Bank introduced Poverty and Social impact Analysis (PSIA). PSIA was defined by the Bank as “analysis of the distribution impact of policy reforms on the well-being of different stakeholder groups, with particular focus on the poor and vulnerable” (World Bank: 2010: 1)7. Researchers in relation between growth and poverty had argued that growth reduce poverty higher when the level of inequality is low. At the same time, the higher inequality reduces the rate of the growth (Shaffer: 2008: 6). Eliminate or eradicate poverty, not redaction or alleviation8, is the only hope for those groups in the bottom of the economic scale in Bangladesh. PWD are one of those groups. Elimination poverty means provide the basic needs for all people. Providing the basic needs for every human being is not economic issue only but also human rights issue (UNDP: 2000: 73). Human beings wherever they are living, they have the right that their basic living needs are met in a way can maintain their human dignities9. Society has obligations to ensure all people have equal position to obtain these needs and it is the duty of that society to help people who have health or physical conditions prevent them from obtain these needs on equal basis like others. Children with disability need their rights of education are secured and woman with disability need to be protected against all kinds of violence10. From this point view, the human rights approach is essential in dealing with PWD issues. investments that maximize growth along with generating a “superior” pattern of distribution covering different forms of assets rather than a strategy that maximize economic growth alone” ( ADB: 2004: 18). 6 Hulme argued in “country where a significant proportion of the poor are chronically poor, then policies to redistribution assets, direct investment toward basic physical infrastructure, reduce social exclusion (from employment, markets and public institutions) and provide long-term social security will be necessary if poverty is to be significantly reduce” (Hulme: 2003: 404). 7 Regarding Bangladesh, The World Bank study found that “PSIA had a moderate effect on country policies” (World Bank: 2010: 57) 8 Hulme argued that in era of globalization under the neoliberal vision many are seeking to rapid reduction of poverty. This vision sees “the poor as those who are not effectively integrated into the market economy. This leads to focus excessively on the role that market forces can play in poverty-reduction. Without a doubt, such approaches can help many poor people but there are two problems with them. First, such a focus will not meet the needs of all the different types of poor people. Second, such an approach encourage a focus on those poor whom the market can “liberate” from poverty but neglects the needs of those who need different forms of support, policy changes, or broader changes within society that take time” (Hulme: 2003: 404). 9 Article 25 (1) 0f Universal Declaration of Human Rights “Everyone has the right to a standard of living adequate for health and well-being of himself and his family, including food, clothing, housing and medical care and necessary social services”. (UN: 1948). 10 World report on disability for 2011 stated that “ Disability is human rights issue because: • People with disabilities experience inequalities- for example, when they are denied equal access to health care, employment, education, or political participation because of their disability. • People with disabilities are subject to violation of dignity – for example, when they are subjected to violence, abuse, prejudice, or disrespect because of their disability. • Some people with disability are denied autonomy- for example when they are subjected to involuntary sterilization, or when they are confined in institution against their will, or when they are regarded as legally incompetent because of their disability.” (WHO: 2011: 9)
Page 2 of 52
One of the main problem confront any researcher in the issue of the PWD in Bangladesh, is the lack of data. Researchers in PWD issues in Bangladesh depend frequently in their studies on surveys of small number of samples not more than several thousand in best cases and did not cover all the country. Many of these surveys did not reflect the real conditions of PWD because its limited scope. At the same time, many researchers try to face the lack of data by applying international estimates about PWD such as WHO estimation about the number of PWD. These international estimates may get the agreement of many but not the scientific confirmation of their credibility. In fact, in the case of Bangladesh many of these estimates defy the logic. If we take WHO estimate about the disability prevalence in Bangladesh as example. WHO when estimate 10% of world population have kind of disability. It does not mean all countries have the same percentage. Some countries are above the estimate and other less. If we accept that disability prevalence increase as a result of malnutrition11, diseases and poverty (UNESCO:1995), the logical conclusion Bangladesh is one of the countries which are higher than the average 10% because it has a lot of these negative conditions12. This conclusion held up by UNICEF Multiple Indicator Cluster Survey (MICS) 2006 which found 17. 5 percent of the 2-9 year old children in Bangladesh had one or more reported disabilities (UN: 2007: 54). Thanks to VIDA (Volunteers for International Development Australia) program, I have the opportunity to work in Bangladesh at PBKS One of the largest disable people organization in the country and I have the opportunity to see closely the living conditions of people with disability and deal directly with their issues. During my work, I have the opportunity to acquire numbers of base line surveys have been conducted by BPKS for its PSID projects during last three years and in different part of the country. The total number of PWD who had participated in those surveys more than 21,000 persons with disabilities. Those surveys can spot the light on many aspects of the living conditions13 of PWD, give reliable access to the researchers in the field of disability, and offer credible source to confirm or to argue many of the data about PWD in Bangladesh. Researching the living conditions of PWD in Bangladesh is essential for all related stakeholders. First and for most for PWD, it is important that other stakeholders have the full knowledge of their situation. Many of their living conditions are beyond the normal suffering of the majority of the population under the poverty line. For some of them it is a matter of life or death and there is no statistics can express these sufferings. For majority of PWD those matters are missing dreams, pains, lifetime and lost opportunities in all aspects of life. Knowing the depth of the living conditions of PWD is the main crucial step for all 11
According to UN estimate, 200,000 children go blind each year because of Vitamin A deficiency (UNESCO: 1995). 12 UNICEF studies notes that disability prevalence is greater in countries at earlier stages of development because of many factors. Among them are high level of poverty, insufficient disability prevention program, inadequate health care and the absence of the political will and interest to deal with disability issues (Elwan: 1999: 22). 13 “Living conditions are the circumstances that preserve life without necessarily engendering it; factors that shape the level and quality of life”(Morin: 2010: 97)
Page 3 of 52
people working in the field of disability in Bangladesh particularly for disabled people organizations and human rights activists. Second stakeholder is the people of Bangladesh, government and society. PWD not only the largest minority in Bangladesh, they are integral part of Bangladeshi society. There is no real success can be achieved in the field of the development and poverty elimination if there is no change in the living conditions of PWD. At the same time any success in changing the living conditions of PWD means a success in changing the life of large numbers of the population of the country. The lack of reliable data and researches is the major block to Third World government from developing policies regarding PWD issues (Albert: 2006: 7). Ignorance is the worst enemy for PWD. For long time governments14, Governmental and social institutions had refused to recognize the rights of PWD because they did not appreciate the challenges face by persons with disability and the necessity of have especial laws, strategies and policies to deal with their living conditions. It was observed that studies in the living conditions of PWD were “powerful tool in development of policy and services” (Eide: 2005: 16)15. Third stakeholder is the international community particularly its bodies that involve in international development and aids. It is needless to say that disability become cross cutting issue in aids and in the work on many of United Nation agencies and other international organizations16. There are few studies about the living conditions of PWD in the world especially in developing countries17. Most the academic studies were more concern on establishing a theoretical framework to the issues of disability and analyzing the living conditions of PWD is not their main concern especially the lacking of the empirical work in the issues of disability in Third World countries (Filmer: 2008: 141). In other hand, two kinds of studies dealt with the living conditions of PWD. First those which had written to serve practical objectives such as evaluation reports, surveys, statistics and annual or advocacy reports. This kind of “studies”, are lacking the analytical depth. The second kind of studies, those studies had been written in the field other than the field of disability and studied the living conditions of PWD as a part of larger group such as poverty studies. Those studies had not appreciated the extra heavy weight of disability on persons with disability. Even though, all mentioned studies have great deal of
14
One of the examples of ignorance by government is not accepting the reality that there are abuses against PWD especially women. During my work closely with women with disability organization in Bangladesh I heard many stories about women with disability subjected to sexual abuse end with unwanted pregnancy. Even though the Bangladeshi government report about the implantation of the Convention on the Rights of Persons with Disability stated “The social fabric of Bangladesh in such that, there are hardly cases of unwanted pregnancies arising out of wedlock, furthermore for women with disabilities” (GOB: 2010: 28) 15 The observation was made by workshop was arranged in Gaboron, Botswana on 6th June 2005. Large number of African DPOs and international researchers were participated in the workshop. (Eide: 2005: 16) 16 Great numbers of INGO, UN agancies, World Bank, USAID, DFID, AUSAID, Oxfam, Save the Children have produced policies and/or guidelines to cover issues of disability in their works (Albert: 2006: 1) 17 Should make a reference hear to the work of some researcher in study the living condition in Africa such as (Eide & Others: 2001) (Eide & others: 2004)
Page 4 of 52
data and insights and they are great asset for any researcher in the field of disability18. To conduct this study, two important issues related to the methodology of the study have to deal with, the surveys’ data and choosing the analytical framework suitable to this study. The surveys were conducted for reasons other than the aim of this study and the author of this research did not play any part in the design and accomplishment of the surveys. As a result, the gap where it may found in the date must fill by other secondary resources. Other problem is the matter of the reliability, because this data collected in different times and by people the author has no access to them. The only option left to this study when there is doubt about any data is to dismiss this part of data. Therefore even that the number of the PWD who participate in the surveys about 21000 but not all the survey findings are reflect the views of all participants. Some the findings depend on less of this number. The study will refer to the number of the participants of each finding. Choosing analytical framework of study was important as dealing with survey data. The living conditions of PWD in Bangladesh is overlapping many fields of studies such as disability, poverty, development, health and human rights. Because the author did not play any role in collecting the survey data, there were another constrain on this study to choose an analytical framework suitable with available data and the aim of the study. Normally, researchers choose the analytical framework first and looking for the data after that. In this study we have the reverse; the data were available before the study started. The issues of analytical framework and the surveys’ data will be dealt with in chapter 1 and 2 of the study. Poverty and disability played important role in shaping the living conditions of PWD in Bangladesh. Of course, not all people with disability live the same conditions but when 80 per cent or more of PWD live bellow the poverty line, it is easy to understand that the most majority of them are sharing the same living conditions. Persons with disability like other in society can identify their selves not only by their disability but by other identities such as gender, class, race, religion, sect, region and others. Most persons with disability tell you that they have discriminated more because their disability than other identities and this discriminations were harder on them than the other kinds of discrimination. As one disabled woman expressed “when you were discriminated as a woman, you hated but you understand where it is coming from, but when you discriminated as disabled woman, you can not understand why”. The Third chapter will deal with living conditions of PWD in Bangladesh and try to answer the question of the study; why are they suffering from deep chronic poverty? 18
World Bank study surveyed available data about disability and divided to five types. Type 1- Statistic reports on poverty among PWD vs. the general population (9% of available data). Type 2 – Data about PWD regarding to employment, health, social assistance, or other subject related to poverty (21% of available data). Type 3- some mention to PWD in relation to poverty without any data (50% of available data). Type 4- No mention is made of disability (20% of available data). The same study found nearly half of the countries which cover by World Bank poverty assessments did not have any data made reference to the role of disability in relation to poverty (Braithwaite: 2008: 8).
Page 5 of 52
Chapter 1: Analytical framework: Disability and Chronic Poverty It is estimated that 536 million persons were their income below $1 a day poverty line. “The number of those in chronic poverty range between 134 million and 188 million representing between one fourth and one third the annual rate” (UN: 2009: 57). Bangladesh is known famously for its poverty and to be precise its chronicle poverty19, which is the main common factor of the living conditions of PWD. When there is no theory can be applied 100 percent and there is no rule without exceptions. The principle of the probability is the controlling principle in scientific research especially social research. Scientific research cannot be build on exceptions at the same time cannot cancel them. The only logical path for the scientific research to take is the path of the “probability”. The application of the principle of the “probability” is the starting point in designing the analytical framework of this study The analytical framework of this study can be summarized in following two points: • If you were born in Bangladesh with medical impairment, it is most likely you were born in poor family. Mainly, because 80 percent of Bangladeshi populations are poor. And most probably the main cause of your impairment originated from conditions of poverty such as diseases, malnutrition, low health care and hazardous environments20. Your conditions of poverty depend on the level of your “assets” “capabilities” and “opportunities”. • If you are poor disabled person in Bangladesh, you are most likely fall in conditions of chronic poverty because your poverty is multidimensional and for long duration. In addition you are suffering from social exclusion and vulnerability21. 19
An international survey for 379 households in 21 villages in Bangladesh found that 31 percent of households in the sample were poor in both 1987-1988 and 2000 (UN: 2009: 57) which confirm the issues of chronicle poverty to high percentage of the poor in the country. Particularly, those who are in the bottom of economic scale such as PWD. 20 “Over 100 million people have impairments as a result of malnutrition. 250,000 children go blind every year through lack of Vitamin A. 800 million people are at risk of preventable learning difficulties through lack of iodine. 100,000 women in Africa acquire impairments through childbirth complications. 40% of hearing loss in children in the majority world would be preventable by early identification. ” (Stone : 1999: 1-18) 21 World report on disability 2011 stated; “A growing body of empirical evidence from across the world indicates that people with disabilities and their families are more likely to experience economic and social disadvantage than those without disability.” (WHO: 2011: 10)
Page 6 of 52
1-1
Lack of assets, capabilities and opportunities Poverty is lack of assets, capabilities and opportunities for someone to satisfy his/her basic living needs and for the people whom he is responsible. Assets are possessions which only have effects when have the ability to use or to become capabilities, and this could happen in broader socio-economic environment provide the opportunities to this utilization. Land without capability to use in productive way has not much value at the time. Or education without a job means little in change the living conditions of individuals. And all this match of assets could happen only in well organize society offer the opportunities to these processes to happen (shepherd: 2007: 16). Every economy by its nature offers a lot of opportunities to match its asset. The problem not every individual or groups have the same chance of opportunities and those who have less opportunities, are the poor people in the society. Poverty is viewed as economic conditions or lack of economic resources of income generation (Hulme: 2001:6). With the world complexity and diversity, some researchers have argued that the economic approached could not explain poverty and its affect over the world. Consequently, poverty has viewed beyond it economic facts to include others unsatisfied basic needs for the poor such as education, health, social inclusion and dignity. In 2000, World Bank expanded its poverty concept to include beside the martial deprivation other dimensions of poverty such as low levels of education and health, vulnerability and powerlessness. Poverty in Bangladesh is easy to understand. It is all the above. Poverty in Bangladesh is an economic condition, inability of meeting the basic of the human needs and social exclusion. As noted, the poverty of PWD in Bangladesh is not in question but the depth of their poverty under the question. Two terms about poverty have an interest of this study are; extreme poverty and chronicle poverty. Extreme poverty is the absence of the basic needs of human survival22. It could strike people in any society who are affected by natural disasters such as drought, flood, earthquake or hurricane, or by manmade disaster as war or civil disturbance. Extreme poverty may strikes on small scales such as family cannot afford medical treatment for one of its members or when one family or groups of families thrown out of their local community forcefully for any reason23. Most the time, extreme poverty is temporary and people who are suffering from such poverty could return to their original situation after the end of the causes of their extreme poverty. In contrary of chronicle poverty, it is permanent or long time condition and for reasons beyond their current
22
Wresinski made the same argument that “extreme poverty results when the lack of basic security simultaneously affects several aspects of people’s live”( Wresinski: 1987 quoted in Hulme: 2003: 407). 23 According to Yeo, It is estimated “that 50,000 people, including 10,000 disabled people, die every day as a result of extreme poverty”(Yeo: 2005: 4)
Page 7 of 52
abilities to satisfy their basic need. In addition, chronicle poverty strikes people most the time are in the bottom of the economic scale and their survival is not under threat like people who are suffering extreme poverty. The concept of poverty in this study connected directly to livelihood concept as chamber defined it “as adequate stocks and flows of food and cash to meet basic needs” (Chamber: 1991: 5). Three main dimensions shaping the living conditions of the poor are (Frankenberger: 2000: 3): (1) their human capabilities (e.g. education. health, self-esteem) (2) Their economic and social assets (3) available economic opportunities. Poor people are scoring low in all these three dimensions. 1-2
characteristics of chronicle poverty Yeo and Moore argued that “disabled people have a higher likelihood of experiencing poverty because of the institutional, environmental and attitudinal discrimination faced, from birth or the moment of disablement onward” (Yeo: 2003: 572). PWD have being facing this hostile environment not necessary because other people have ill-intention against them. Most the behaviors against PWD have come from “shared attitudes and values” (Yeo: 2003: 572) or ignorance. Even within their families, PWD can face ‘discriminative’ attitude regarding their education or social activities. In many places of the world, disability is considered as personal tragedy associated with social stigmas against PWD. Some of those stigmas are covered by good will and overprotection. In others occasions, PWD are “out of sight, out of minds” such as in natural disasters emergency plans have no consideration for PWD or even rescue services have no special attentions for PWD and “where access to shelter and medical assistance may not be prioritized for PWD” (Byskov: 2004: 15). Hence it is not surprise that PWD disproportionately represented among chronically poor24. “World Bank estimates suggest that disabled people account for as many as one in five of the world’s poorest” (Yeo: 2003: 579). Four main characteristics have kept PWD in chronicle poverty conditions, are: 1-2-1
Multi-dimensional Poverty Now there is general international agreement that poverty is more than lack of income. No more than the UN General Assembly
24
Andrew Shepherd “identify three interrelated form of chronic poverty: • Long term poverty – poverty that is experienced by an individual or household for so many years that escape is unlikely if external conditions remain unchanged. • Life-course poverty – poverty that is experienced over the entire length of person’s life. • Intergenerational poverty – poverty (or ‘poverty –related capital’) that is transmitted from parents (or other older carers) to children via the conditions of childhood, youth, and inheritance.” (Shepherd: 2007: 4)
Page 8 of 52
resolution 1 2006 expressed this international understanding of poverty which described poverty as; “Poverty has various manifestations, including lack of income and productive resources sufficient to ensure sustainable livelihoods; hunger and malnutrition; ill health; limited or lack of access to education and other basic services; increased morbidity and mortality from illness; homelessness and inadequate housing; unsafe environments; and social discrimination and exclusion. It is also characterized by a lack of participation in decision making and in civil, social and cultural life” (UN: 2009:8) People, who are suffering from chronic poverty, are not only having low economic income and secure predictable sources of livelihood (Narayan & others: 1999:51) but also they are suffering from other poverty dimensions such as lack of education, health, human rights etc (Hulme & others: 2001:9). Some poverty scholar extended the multi- dimension of poverty to include lack of political freedom, economic facilities and social opportunities (Sen, A: 1999). Other emphasized poverty psychological dimensions such as powerlessness, dependency and shame (Naryan: 1999:7). Eide argued that studies and researchers of living conditions have “demonstrated that people with disabilities are worse off along the whole specter of indicators concerning living conditions, and that this gap has also remained during times with steady improvement of conditions for all” (Eide: 2004: 41) 1-2-2
Long duration poverty Poverty is not only multi-dimensional but also its different aspects “interact and reinforce one another in important ways” (World Bank: 2001: 15). One of the results of this fact poverty last for long time. According to Hulme those who have suffered “significant capability deprivations for a period of five years or more”(Hulme: 2003: 405), are chronically poor. The majority of people, who chronically poor, would stay poor whole their lives because the multidimensional factors of their poverty and they are most likely would be the last get the benefits from economic changes (Hulme & others: 2001:11) particularly when those changes control by market factors or they are not intended to change the situation of the chronically poor. Moreover, many have argued that the effect of chronicle poverty may extend beyond the span life of currently poor to the next generation. The ability of parents to invest in their children education and health has main effect on children ability to escape poverty (Hulme & others: 2001:14). Living long duration in poverty have lasting effect on the personality of the poor. Long-term employment and economic dissatisfaction
Page 9 of 52
may result low of self-perception of the individual to his/her capabilities, which prevent him/her from any opportunity to improve his /her living conditions (Sen, B.: 2003: 525). PWD are more than others have the probability of living long duration in poverty because of ill-health, few employment opportunities, little education and low self-confident and social skills. 1-2-3
Social exclusion Individuals as community could be suffered from chronicle poverty but most the time chronicle poverty appears more frequently in people have a reason or factor other than the lack of economic resources25. Those people who are sharing this reason or factor, they constitute a group26 such as PWD which their poverty and the depth of this poverty cannot explained only by the lack of economic resources but also by social exclusion and inaccessibility (Barnes: 2009: 14). Social exclusion limits the opportunities in all aspects of life economic and social. In the economic level means fewer opportunities to access to assets and improve economic well-being (Mitra: 2005: 24). In social level means inaccessibility to social services offer by the community (May: 2003: 5). Prejudice is the base of social exclusion, which is the cause for long duration poverty (Rust: 2006: unpaged). Social exclusion is not only one of the symptoms of chronic poverty but also it is the main cause of falling in chronic poverty. Concerning PWD without exclusion, “impairment appears to have no other links to disability and poverty” (Rust: 2006: unpaged). In Bangladesh as in many developing countries people regarded PWD are the most disadvantaged community (Elwan: 1999: 15). PWD are excluded from labor market and education on the base of their physical impairments. Stone argued that some of barriers which prevent PWD to have fair excess to their basic rights such as education, job and public services, are “rooted in local attitudes and responses to impairment. Others are rooted in the broader structural processes of poverty and injustice that produce disability as well as impairment” (stone: 1999: 1-18). The affect of social exclusion appear in it full strength when it is attach to elements of identity such as gender, race, cast and disability. The change in economic conditions only cannot change
25
For example, World Bank Study found religion of household head affect the economic situation of the household. In Bangladesh household with non-Muslim heads tend to be poorer. (World Bank: 2008: 36) 26 Hulme argued “it is useful to identify social groups, communities or even the populations of spatial areas were chronic poverty is concentrated. The concept can even be applied to countries in which the majority of people have been persistently poor for many years” (Hulme: 2003: 405).
Page 10 of 52
the situation of these groups (UN: 2009: 71). While the social exclusions were the main factor to poverty of these groups, poverty in its turn reinforce social exclusions. The fact is, despite we are in age of globalization27 poverty is intensifying among certain groups (Narayan: 1999:12) internationally and nationally. CPRC team describes those groups who “commonly they reside in remote rural areas, experience social discrimination, lack social networks, are disadvantaged because of impairments and have been displaced or relocated” (Hulme: 2001:21). They identified five categories of “individual, households and social groups who are particularly likely to suffer chronicle poverty’’ (Hulme: 2001:21) such as older people, children, widows, refugees, racial and religious minorities, indigenous, immigrants and people with disabilities28. In many countries in the world people have used different descriptions for chronically poor. In Ghana, for example, people call group of the poorest people as ““God’s poor”. Groups which have specific factors which prevent any remedy to their bad situations such as – disability, age, widowhood and childlessness”(Narayan: 1999:28). Disability is frequently considered as main characteristics of being “very poor” (Narayan: 1999:203). Those types of sociocultural stigmas toward people with disability have led to exclude them from most social processes and leave them isolated and even unaware of their basic human rights (Bird: 2004: 19). 1-2-4
Vulnerability Vulnerability “is the likelihood of falling into poverty or falling into greater poverty” (Shaffer: 2008: 6). Or on others words’ vulnerability is the opposite of sustainable livelihood, which the later means the ability to cope with stress and shocks29 (Chamber: 1991: 6) Therefore, the groups are more likely falling in chronic poverty are groups are already poor or poorest of the poor30. Vulnerability creates psychological conditions prevent the poor from taking the initiative to change their economic situation. Against the logic that
27
The term of globalization have been used in this study, is used in its broadest sense to refer to the process of intensive exchange of trade, individuals, money, technology, news and cultural material among world populations beyond any social, political or geographical limitations. 28 Binayak Sen refer to the vacuum of poverty literature related to “social disadvantage” for those of social group in Bangladesh (Sen, B.: 2003: 515). 29 Hulme sees vulnerability “as the risk that a household will suddenly (but perhaps also gradually) reach a position with which it is unable to cope, leading to catastrophe (hunger, starvation, family Breakdown, destitution or death)” (Hulme: 2003: 409). 30 Studies on food security have detailed vulnerability dimension of chronic poverty and the ability of chronically poor to move out of their poverty (Hulme & others: 2001:14). Those studies found direct relationship between living conditions and the level of vulnerability (Frankenberger & other: 2000: 3).
Page 11 of 52
people have little, they do not worry of the risk but when what they have, is all what they have, they are more unwilling to risk it. On survey were people in 60 countries asked to describe what mean well-being the most distinguish answer from Bangladesh was “to have a life free from anxiety” (World Bank: 2001: 16). On other hand, social exclusion limits the opportunities of these groups from get the benefits of any economic and social changes. Shepherd argued that “vulnerability is greater and returns are lower where individuals or groups of people are excluded in some critical way from mainstream, social and political institutions” (shepherd: 2007: 16). Other side of vulnerability, which link to nonincome risk, is the “the probability of being exposed to number of other risks (violence, crime, natural disasters, being pulled out of school” (World Bank: 2001: 19). Needless to explain that, PWD are the most and first victims of conditions of poverty and social exclusions and consequently, they are most vulnerable group in a society like Bangladesh. 1-3
Disability and Poverty Disability and poverty have causes and result relationship31. The main reason that many PWD are poor because their disability. At the same time, poverty is the reason that many have their disability in first place. Bad Health practices, poor nutrition and lack of health awareness and services are the main causes of large portion of disability prevalence in developing countries. To be disabled person, you would have the burden of lack of employment opportunity, education inaccessibility and social exclusions, which they in turn deprive you from many of economic gains. Disabled children for poor families get fewer investments in their education and health compared with non-disabled siblings (Yeo: 2001: 9). It is not surprising that PWD everywhere in the world are predominately poor. Metts Robert stated in his study to the World Bank that about 250 millions disabled persons in the world undisputedly are among the poorest of the poor in their countries (Metts: 2000) . The relation between disability and poverty is not theoretical only but also practical one particularly for those working in the field of disability. In the words of Tom Rust and Robert Metts; “No poverty program can be effective if it ignores its poorest minority, and no disability program will be successful it ignores the
31
According to Sophie Mitra; disability may lead to poverty due to two facts. “First, disability places constrain on an individual earning capacity”. “Secondly, disability adds direct costs related to disability, such as medical expenses, equipment, adaptations to housing and means of transportation and personal care”(Mitra: 2005:10).
Page 12 of 52
conditions faced by most disabled people” (Rust, Tom: 2006: unpaged). Figure 1 and 2 illustrate the cycle of disability and chronicle poverty. PWD have been facing since they were born by different types of social exclusion, low expectation and inaccessibility to many basic public services such as health and education32, which resulted, PWD have low social and educational skills, low self-esteem33 and little benefits of market and policy changes. Consequently, those conditions lead to multi-dimensional poverty, few income generation opportunities, long period of economic dependency, discrimination base on their impairment and last but not least vulnerability and immobility. All these elements lead PWD to fall in conditions of chronic poverty (see figure 1). In other end of the cycle, chronic poverty or poverty in general play important role in increasing of impairment incidents (Hulme & others: 2001:15), bad health and wellbeing, which deepening the suffering of disabled people. Poverty by its nature means small share of national economic recourses, poor living conditions, limited access to health care and unhealthy nutrition. Accordingly, poverty is causing great social deprivation, little investment in children with disability, and lack of human rights and low political participation of PWD (Hulme & others: 2001:15) (see figure 1). The cycle of disability / chronicle poverty, create the real living conditions of PWD (see figures 2). The relationship between chronicle poverty and disability offers the analytical framework to this study. Like any framework, it tries to simplified complicated phenomena to its basic elements. The multidimensional nature of disability and chronic poverty intertwine in many aspects that each of them can analyses by the same tool. These characteristics will investigate in the third chapter of this study concerning PWD in Bangladesh based on the surreys’ findings, which is the subject of the next chapter. 32
Case study from Bangladesh illustrated how PWD are missed in many essential public services. Abdur Rahman is a school teacher of Khanpur district: “I know every child in the area, including all the children with disabilities. But in the survey report of the catchment area, I have not reported any of those children. I have my reasons. If I show them in my report, I will have to admit them in my school. I don’t have any training on how to handle them. No teacher in this locality has this training. So how could we take care of them? I have almost hundred children in each class, but we are only three teachers. So we have two shifts. That’s how we manage the school. We don’t have enough time to take care of the normal children, how could we give attention to the children who have problems. Then at the end of the year, if many children fail it is our reputation as teachers which at stake. Our increment, promotion etc. all depends on our output as teachers. These disabled children will ruin the situation even more. So we thought it is best not to report these children at all in very first case” (CSID: 2005:45) 33
“Disabled people are often treated and feel like worthless citizens. Feelings of rejection, shame and low self esteem are commonly found amongst disabled people” (Dyer: 2003: 3)
Page 13 of 52
Figure 1 : Disability/Chronic Poverty Cycle
Disability
• Social exclusion • Low family and community expectation • Lack of health services • Inaccessibility of basic public services such as health and education
• Low educational and social skills • Low self esteem • Poor health • little benefits of market and policy changes
•
•
• • •
Multidimensional Poverty Few employment & income generation opportunities long period of economic dependency discrimination base on their disability Vulnerability & immobility
Chronicle Poverty
Through figure 2
Page 14 of 52
21
Figure 2 : Chronic Poverty / Disability Cycle
Chronicle Poverty
• small share of national economic recourses • poor living conditions • Limited access to health care & education • Insufficient or unhealthy nutrition
• social deprivation • Little human investment in disabled children • Lack of human rights • Low political participation
• Increase numbers of impairment incidents • Deepening disabled persons vulnerability • Bad health & wellbeing
Disability
Through figure 1 Page 15 of 52
22
Chapter 2 Surveys’ Findings: PWD in Bangladesh In the period 2007-2009, BPKS had conducted numbers of base line surveys as part of its projects to establish community base organizations for PWD in different part of Bangladesh with the help of different foreign donors. The Projects were called persons with disabilities self-initiative to development (PSID)34. The surveys had run by each sub-district cover by the project. There was no sampling because the intention of the surveys was to reach all people with disability in those areas. Even though, three factors had played important role in the sampling of the surreys, firstly, the ability of the people who conduct the survey to reach PWD. Secondly, was PWD and their families’ willingness to participate in the surveys35. Thirdly, was the definition of disability for the surveys’ conductor and what PWD and their families considered as disability. It is rightly to mention that this problem face by every research in the field of disability around the world that the cultural variations are different in each community36 of what it is considered disability (Yeo: 2001:7). There are some conditions may consider disability in one place, people do not view it the same way in other place. As example, cases of dyslexia or learning disability are considered types of disability in developed countries, while such cases have not much of concern or recognition in developing countries (Barnes: 2009: 6) such as Bangladesh, where the literacy rate is no more than 50 percent. The affects of these factors suggest that the samples in the surveys were those PWD whom were could be reached, their families were recognized their disability as disability and willing to participate in the surveys. It is important to mention here that these difficulties and its consequences are experience by disability data collector everywhere especially when the surveys’ question, “Do you have a disability?”(Braithwaite: 2008: 7)37 The methodology of the survey was face- to – face interviews with PWD and their families, using especial questionnaire was prepared by BPKS with the cooperation of the foreign donors. BPKS had trained numbers of volunteers to 34
BPKS stress that PSID project is working in different model of Community Base Rehabilitation (CBR). BPKS believes that PSID projects are right base project and contradict the medical model in many aspects. 35 Wei Liu argued that many PWD may not participate in surveys because they “do not want to reveal their genuine disability status in any data collection because they fear breaches of confidentiality and subsequent stigma and discrimination” (Liu, Wei: 2007: 3). 36 “People who in the North may be considered disabled because of learning difficulties for example, may from the author’s experience, go unnotices in a rural community somewhere like Vitnam, where physical labour is more highly valued than literacy. In many African countries on other hand, people with albinisin are automatically considered disabiled, and often highly stigmatized, whereas the tend not to be in the North” (Jones:2002: 6) 37 According to Daniel Mont: “asking some variant of Do you have a disability?- generates the lowest rates of disability. The positive response to this question is typically in the one to three percent, even when the same population using a more functional approach yield estimates in 10 to 20 percent” (Mont: 2007: 7)
Page 16 of 52
conduct these interviews before the start of the projects. Because the nature of collected data was quantitative data, the margin of human error was less, but at the same time the surveys do not contain important qualitative data. There is no indication in available documents of surveys about two questions in the methodology. One: who is a person with disability? The second; what is the unit of survey? There are many definitions for a person with disability. Some of them are wide such the one adopted by United Nation Convention on The Rights of Persons with Disabilities (CRPD)38. Other definitions are very narrow, usually constructed to serve particular point view about disability. There are many variables in defining disability and who is a person with disability. Three main factors play important role to identify a person with disability. Firstly; a person with disability is a person with medical or health impairment (Health Factor). Secondly; a person with disability is of disability socially recognized (Social Factor). Thirdly; the person with disability him self recognize her / his disability and personalize his/ her experience (Personal factor). For example many elderly people in many countries, one of them Bangladesh, they are not considered by their selves or by the society as disabled people because their impairment or physical limitation due to their age (Mont: 2007: 8). 2-1
Surveys’ participants The surveys covered 24 districts in Bangladesh. 222,273 families participated on the survey. 21,698 families were recognized one or more of family members have kind of disability. The number 0f disabled persons found in those families 22,880. 12991 (57%) were males and 9889 (43%) were females. the surveys found from total of 20352 persons with disability, 4611 (23%) under 15 year old. Interestingly, the survey found 2651 (57%) were boys and 1960 (43%) were girls which is the same general percentage. charts 1 and tables 1, 2 a illustrate the above figures.
38
Article 1 of CRPD defines persons with disabilities “include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
Page 17 of 52
Table No. 1 Areas and surveys’ participants Family Surveyed Area with Family PWDs
Male
Female
Total
Barguna Sadar Bamna bagerhat Sadar Saronkhola Patuakhali Sadar Kolapara Dhaka Narail Nilphamari Rangamati Gazipur Khagrachari Chittagong/ CC East Gomdondhi West Gomdondhi Municipality Maharajpur Baliadanga Gobratola Patnitola Akbarpur Shihara Dibor Nirmoil
12227 11591 16565 18519 13877 11598 12452 14300 14780 9087 13473 10773 8718 3925 5075 12089 4135 4114 5322 4556 4218 3911 3660 3308
1661 1302 1604 2114 1446 1561 981 990 1321 1080 1155 1072 630 282 364 1279 292 341 486 414 288 430 331 274
1004 806 1003 1263 891 1014 567 596 778 642 732 621 371 187 234 788 168 203 129 253 157 257 182 145
701 558 678 922 643 818 461 426 604 497 461 478 308 133 147 555 124 168 392 173 146 194 155 147
1705 1364 1681 2185 1534 1832 1028 1022 1382 1139 1193 1099 679 320 381 1343 292 371 521 426 303 451 337 292
Total
222273
21698
12991
9889
22880
PWDs
Page 18 of 52
Table No. 2 :PWD According to their age and gender PWD Family Surveyed Total Area with Family PWDs Barguna Sadar Bamna bagerhat Sadar Saronkhola Patuakhali Sadar Kolapara Dhaka Narail Nilphamari Rangamati Gazipur Khagrachari Chittagong/ CC East Gomdondhi West Gomdondhi Patnitola Akbarpur Shihara Dibor Nirmoil
12227 11591 16565 18519 13877 11598 12452 14300 14780 9087 13473 10773 8718 3925 5075 4556 4218 3911 3660 3308
1661 1302 1604 2114 1446 1561 981 990 1321 1080 1155 1072 630 282 364 414 288 430 331 274
1705 1364 1681 2185 1534 1832 1028 1022 1382 1139 1193 1099 679 320 381 426 303 451 337 292
Age >15 M 184 132 211 265 210 242 111 158 168 143 196 178 95 53 82 48 37 60 49 29
Total
196613
19300
20353
2651
2-2
F 135 96 139 217 139 155 98 117 122 126 135 154 57 47 67 31 29 42 36 18
