Abstract

Depending on a range of social and economic factors, a person who is labeled with a disability and the household where s/he resides face transitions in their financial circumstances- changes that can topple their lives, depriving them of basic human necessities. In this study we examine these circumstances for households in the Chuadanga district in Bangladesh. The impact of being labeled with a disability varies across households and individuals. One objective of this study is to determine which groups are more adversely affected and why. The authors analyze transitions in the lifestyles of other household members, e.g., spouse or dependent parents, owing to labeling of a disability, in order to present the overall change in economic activity of the household. Emphasis is placed on exclusion from full-time paid employment, the burdens of complete caring responsibilities and related opportunity costs, and how compromises are made between employment and care responsibilities. Overall, the paper broadens the analysis from poverty and employment to other aspects of life, including economic responsibility, social participatory preoccupations or coping strategies influenced by being labeled with a disability. Based on this research, the authors find that even if the household is able to retain its previous earnings, increased expenditure resulting from the new situation reduces net earnings to an enormous extent. The labelling of a family member with a disability often hinders the economic well-being of the household. Therefore, the structure of the household should be of great concern when analyzing the impact of disability. All members of an affected household experience a change in their daily activities, be they other earners or dependents, like children, who forego education and may have to contribute to income as well. Having a spouse in these situations can serve as a blessing, as income-earning responsibilities can be shared, but the abrupt changes in quality of life often yield tension between the couple, arising from frustration and helplessness. Often, transitions following the onset of impairment of the main earner being labeled with a disability, result in intense poverty.

Keywords:

Disability in Bangladesh, chronic poverty, exclusion of people with disabilities, Chuadanga district, economic impact of disability.

Introduction
According to the United Nations (UN), one person in 20 could be labeled with one or more disabilities, and more than 75% of them live in developing countries (cited in DFID, 2000). Similarily, the World Bank estimates that people who could be labeled as disabled may account for as many as one in five of the world's poorest people (Elwan, 1999). Of the World Bank's estimated 1.3 billion people living on less than $1 per day, approximately 260 million of them could be labeled with a disability (Wolfensohn, 1997). Disability and poverty are often intertwined realities both directly and indirectly in the lives of the impoverished. They are both causes and consequences of each other.

Not only does disability lead to poverty through direct, indirect, and opportunity costs but households subject to poverty are much more exposed than others to disabling circumstances through lack of nutrition, little or no access to preventive and curative medical care, vulnerability to disease and a high risk of occupation- and environment-related accidents. These factors create extensive permutations and their presence "has a tremendous capacity to destroy the lives of people with impairments and to impose on their families burdens that are too crushing to bear" (Action, N., Secretary General, Rehabilitation International, in Shirley, 1983: 79, cited in Elwan, 1999).

For this study, being labeled with a disability refers to the process initiated by onset of illness or impairment. In part, our study focuses on the economic and social consequences that follow being labeled with a disability in the Chuadanga district of Bangladesh. We aim to illustrate the changes in net income of households with and without people who have been labeled with a disability. In this paper, households comprised of one or more members who have been labeled with a disability will be categorized as "affected" households and all others as "unaffected" households.

The study took place in Chuadanga, a district in Bangladesh that is approximately 300 kilometers southwest of the capital city, Dhaka. Bordering India, Chuadanga's inhabitants have only recently had access to development programs designed to address their high levels of poverty and isolation from the central parts of the country. Although in 1993 one of the very first non-governmental organizations (NGO) in Chuadanga, Impact Foundation Bangladesh (IFB), launched a charitable trust for people labeled with disabilities in Chuadanga, it remains a region that is largely ignored in terms of capital by development organizations relative to their commitments to districts of the West, South and even the impoverished northern regions of Bangladesh.

Impact Foundation Bangladesh researchers conducted a baseline survey in April 1997 (IFB, 1997). In part, they found that 256 of the 4,528 randomly selected Chuadanga households reported one or more people labeled with disabilities. In terms of the survey, disability encompassed a wide spectrum of impairment including physical and neurological. Relative to surrounding districts, Chuadanga has a high poverty rate, characterized by low income and lack of resources, as well as a high proportion of people labeled with a disability. Chaudanga was chosen due to these and other factors, which we will briefly review.

Overall, there are hardly any data on disability in Bangladesh and the few significant statistics available are often out of date. Disability is not included in any routine data collection or surveillance system in the health sector, though it was included in national censuses in 1982, 1986, and 1991 (Bangladesh Bureau of Statistics, 1994). The reported prevalence rates of between 0.77% and 0.47% of moderate to severe disability are far below international and national estimates. A survey on prevalence of disability from 1994 by the Bangladesh Bureau of Statistics (BBS) shows a rate of 10.62 disabilities per 1000 population (BBS, 1994). This figure is also considerably lower than commonly used international estimates. The underreporting of disabilities is very common in national censuses, due to inconsistent definitions of disability, inappropriate questionnaire design, insufficient training of enumerators, and possibly also families "forgetting" members with disabilities (Iqbal, undated).

According to a sample survey made by the World Health Organization (WHO) and some NGOs, the prevalence of disabilities in Bangladesh is close to 10%, or about 12 million people. ^[1] Many NGOs using separate sampling frames and methods have produced different estimates, some being much higher than that of WHO. Action Aid, Bangladesh and SARPV estimated 8.8% of the total population as representing disabled people (Iqbal, undated). The prevalence of disability in children younger than 18 years has been estimated at 6% and for the age group above 18 years the prevalence is about 14%, corresponding to 3.4 million children and 10.2 million adults with disabilities (Iqbal, undated).

Table 1. Extent of disability by type as percentage of total population
Bangladesh, 1991..

Source: Bangladesh sample census 1991 (cited in Iqbal, undated).

The figures in Table 1 represent only individuals labeled with physical and neurological disabilities, thus excluding their families and dependents who are both directly and indirectly affected by the social discrimination against people who are labeled with disabilities. If these dependents were included, then the effects of disability would increase exponentially (Iqbal, undated).

It is extremely unfortunate that despite the seriousness of disability in Bangladesh, relative to the overall percentage of the total population, primary evidence and investigative results on issues related to disability are scarce. At the state level, this low priority can be explained by willful political ignorance about the long- and short-term economic benefits of targeting the development of people labeled with disabilities and their dependents (Harriss-White, 2003).

Bangladesh has witnessed mushrooming growth of NGOs, showing that parallel powers exist to cater to those needs that are not met by the government. However, even the largest NGOs have few programs for people labeled with disabilities and they continue to implement poverty reduction projects that have overlooked the participation of people with impairments at every stage, and often specifically exclude them from policy making and practice. NGOs often claim to justify such actions by saying that the voice of that minority, unlike the majority, will not have a significant impact on data collected and poverty issues addressed. These organizations portray their achievements by emphasizing the number covered rather than the qualitative development of marginalized groups like people who are labeled with disabilities.

Rehabilitation services and income enhancing schemes for disabled people are offered by only a handful of private organizations, and are not sufficient for all the potential beneficiaries. Therefore, any costs in terms of money and time incurred due to the onset of impairment, have to be borne immediately by all the household members. According to UN estimates, 25% of the entire population is negatively affected directly or indirectly by disabilities (cited in Harriss-White, 2003).

The impact of being labeled with a disability varies across households and individuals. One of the objectives of this study is to determine which groups are more adversely affected and why. The authors analyze transitions in the lifestyles of other household members, e.g., spouse or dependent parents, owing to labeling of a disability, in order to present the overall change in the economic activity of the household. Emphasis is placed on exclusion from full-time paid employment, the burdens of complete caring responsibilities and related opportunity costs, and how compromises are made between employment and care responsibilities. Overall, the paper broadens the analysis from poverty and employment to other aspects of life, including economic responsibility, social participatory preoccupations or coping strategies influenced by being labeled with a disability.

Literature Review

As in most rural areas, the most common means of employment in Chuadanga is agricultural labor. Overall, the employment rate in Chuadanga is generally low when compared to other districts in the region, with only 48.2% of men and 2.8% of women holding jobs (Bangladesh Bureau of Statistics, 2003). For females, that is the lowest employment rate in Bangladesh. With demand for jobs greatly exceeding supply, it is an employers' market, where they can control wage levels, and their choice of employees is commonly driven toward non-disabled individuals from unaffected households. It has been observed that the economic situation of landowners is less severely impacted by disability than that of landless agricultural laborers. While the former can very easily "rent out" land under sharecropping, a common practice in Bangladesh, the tenant's work is more energy-intensive with longer working hours (Jackson and Palmer-Jones, 1998). This research showed that the average loss of income of affected individuals was to be far greater for those with poor landholdings of less than a half acre (about 975 taka loss) compared to landed people, who had 733 taka loss. ($1 equals about 60 Bangladeshi takas at the 2003 exchange rate.)

That outcome resembles Erb and Harriss-White's (2001) findings in India, where a household engaged in agricultural labor found it extremely hard to bear the complete costs of a disabled male and was plunged into massive debt, unlike land-owning households who, as mentioned above, have more insurance options for the loss of income and choices with which their "elite" status could be maintained. However, the pattern of earnings since 1997 of both the groups show that even those with land holdings of more than a half acre at onset of impairment eventually lost the assets, owing to a rapid increase in expenditure and accumulated debt. For example, 62% of the households with more than a half acre had to sell off the majority of their land (88% on average) within three years of a family member's being labeled with a disability. In part, the decision is often dictated by the burgeoning costs to cover the care of the family member labeled with a disability in terms of treatment and repayment of debt; the situation was seen to be most severe when a working-age man became disabled.

Since marginal farmers do not hire laborers and are fully dependent on their physical strength to make ends meet, any ambulatory impairment can have disastrous consequences. Under such circumstances, the loss of earnings of one male member of a household can result in debt; any savings spent on medical expenses can make the debt situation a "point of no return" (Harriss-White, 2003). On average, the incomes of working age people labeled with a disability in Chuadanga is 60% lower than their non-disabled peers. Moreover, the mean employment rate of people labeled with a disability is less than a quarter of the rate for their non-disabled peers. Often, the loss of income is a consequence of being labeled with a disability, but the degree to which income is affected can be further attributed to a range of conditions, such as the extent of the loss of employment, the reduction of hours in the same job, reductions in total earnings, or a complete change of job (Welch, 2002).

Researchers in the United Kingdom have found that people labeled with a disability are far behind non-disabled individuals in terms of home ownership, substantial assets, and pensions, in spite of the fact that they are in greater need of increased incomes than their non-disabled peers (Burchardt, 2000). Burchardt (2000) concludes that workers labeled with a disability in the UK had lower earnings that correlate with the severity of the disability. Discontinuous and interrupted employment, low annual incomes, and an overall short span of employment do not yield as much pension or other after-retirement benefits as regular, higher paid, long-term employment. Physical incapacity, therefore, paves the path toward impoverishment for these individuals (Burchardt, 2000).

In the UK, the current economic well-being of people labeled with a disability is a serious concern to many scholars, politicians and other citizens. One result of these concerns is the national trend of state benefits and medical facilities. This is very different for many in the developing world, where people labeled with disabilities are deprived of access to public services and income enhancing schemes, owing to which they are often drowned in debt (Welch, 2002). Aside from managing the pain, the discomfort, and the inconvenience of his/her illness and/or impairment, a person labeled with a disability in the developing world also has to cope with inaccessible buildings and transportation, as well as discrimination at work and social events, and no support from state-sponsored welfare programs (Charlton, 1991).

Change in the employment status of one individual affects other household members, especially the spouse. Being a couple has economic advantages over being single because following the labelling of disability, their individual's partner may attempt to increase his/her working hours and earnings to compensate for the reduced income (Singh, 1999). However, s/he is also torn between increasing hours worked and giving up paid employment to provide care and assistance to the impaired partner. Other family members may be neglected because of fewer hours by the spouse to spend at home. Female spouses have the added responsibility of domestic and reproductive activities (Thomas, 2000). In the developing world, the absence of public benefits and lack of adequate compensation schemes makes support of other household members vital to the economic well-being and care of a person labeled with a disability (Harriss-White, 2003). In fact, the very notion of "care" is perceived socially as the women's responsibility and remains extremely anti-male biased (Harriss-White, 2003). Regardless of cause, a downward spiral of economic loss for a family affects all members, especially children, who may find themselves with new responsibilities that compromise their education and health (Khan and Durkin, 1995).

New expenditures following a family member being labeled with a disability within affected households are mostly composed of medical costs, be they one-time (e.g. purchase of aids like crutches or wheelchairs) (Burchardt, 2000), or recurrent (e.g. monthly dosages and combinations of medicine). The recurring costs may entail specialized services like physiotherapy and depend greatly on the severity and medicinal demands related to the impairment. Therefore, in addition to reducing the consumption of food and other necessities, assets have to be sold and debts incurred for direct costs of medical treatment: an investment that is a top priority, especially if the affected person is a male earner. After all, the death of a working adult increases the ratio of dependents to earners. If an illness persists, there is an addition of one more dependent in the household, consuming the resources and time of other earners (Metts, 2000).

The costs of unemployment, both on the family member who is labeled with a disability and others who spend increasing amounts of time caring for these members, often lead to deterioration in the living standards of other family members (Lwanga-Ntale, 2003; Economic and Social Commission for Asia and the Pacific, 1999). The abrupt rise in these direct and indirect expenses attributed to disability affects households with people labeled with a disability in both the developed and developing world (Burchardt, 2000; Hammerman and Maikowski, 1981). For example, while in the UK a direct cost would be taxi fares to commute in case of emergency, in Bangladesh, the equivalent would be the cost of the home health care (in absence of family support and inability to pay transportation cost) accompanying the disabled person to the hospital. On the other hand, food for special diets and medicines are somewhat universal costs.

Although being part of a couple can indeed provide protection against an abrupt fall in earnings when a person becomes labeled with a disability, the blessing often becomes an added burden when the other partner's ability to continue employment is hampered, causing friction between the spouses. In fact, changes in a couple's economic positions, along with the tensions arising from frustration and helplessness, can often create the grounds for partnership dissolution. The seriousness of the situation deepens with changes in the care demanded or provided by one partner, leading to fewer opportunities for leisure activities, events, and interactions that could help reduce the tension. The complex interconnection of health and poverty makes loss of income, asset depletion, increased expenditure, and breakdown in relationships the direct consequences of disability, re-instigating the dynamics of poverty (Department for International Development, 2000). The depletion of resources is almost inevitable following onset of disability within a household. This makes it exceptionally hard for economically challenged households to collectively rise from poverty and similarly, once thriving households find it next to impossible to escape entry into impoverishment.

In the developing world, the most critical asset of people otherwise lacking in education, inherited resources, or specialized expertise is their physical strength (Desai, 1990). When the ramifications of being labeled with a disability include ambulatory impairment, where physical labor can no longer be provided, and exclude the affected people from the formal labor market, people no longer have a means of livelihood, a situation even more probable in countries such as Bangladesh, which lack social security services and state-sponsored progams to aid the improvished (Haveman et al., 1984). Some people switch jobs from more manual to less physically demanding ones, but this implies that they have to start from scratch in terms of experience or familiarity, making their wages far less than in their previous job. Therefore, the description of disability can be summarized as that which is strongly linked to relative incapacity, from which one is rarely expected to escape, and which is the cause and perpetuating force for prolonged poverty for generations to come (Sen, 1992).

Research Questions

The questions that guide this empirical study on the economics of disability in the Bangladesh district of Chaudanga are:

1. How are earnings and expenditures impacted in an affected household, one where a family member is labeled with a disability, compared to unaffected households?
1. Does this differ for families that avoid an earnings loss?
2. How does the category of disability relate to expenditure increases?
3. Is there a difference in earnings based on the gender or position (e.g. parent, child) of the family member who is labeled with a disability?


2. Do affected household members have to alter their lifestyles owing to the labeling of family member with a disability?
1. What is the overall change in the economic activity of each household member?
2. How does this increased burden of caring for family members impact full-time employment?
3. Are there differences in care based on gender?

Methodology

We were granted access to the Impact Foundation Bangladesh database that reserachers created to record participant information from their 1997 survey. The author selected 40 households from the records using purposive sampling, in order to analyze the onset of disability since 1997 and explore the relationship between disability and chronic poverty.

Our study is a multidimensional two-step flow process, beginning with the Impact Foundation Bangladesh database and then interviewing our participants, which include people labeled with disabilities, who shared their life stories with us. They also spoke about their current situation. We are grateful for this opportunity to collaborate with our participants. Their openness and honesty made the study possible. After randomly selecting our participants, 50% of whom owned less than a half acre of land, we also selected 32 unaffected households, those without a member who has been labeled with a disability, for a comparative analysis of the current socio-economic structure. All four sub-districts in the Chuadanga district were represented.

In the first phase, 10 "affected" households from each sub-district were selected from the Impact Foundation Bangladesh survey database, composed of at least one disabled person, based on the medical model of disability^[2] to simplify the identification process. The choice of households was governed by the aim of interviewing the same number of disabled men as women, from different age groups. The sample size was equally categorized into four types of disability: blindness, orthopedic impairments, hearing impairments, and mental disorders. Furthermore, 50% of the interviewees were selected on the basis of possession of less than a half acre of land, while the remaining half held more. This was done to look for correlations, if any, between land holdings and the relative poverty of the disabled people.

In the first phase, we utilized three interview formats. Our intial interviews focused on demographic and household information using semi-structured, open ended individual questionnaires. Then, we had open-ended interviews focusing on the participants' life histories. These also included questions on the present day in terms of welfare, employment, and health. To illustrate, next are two participants' life histories.

Julhash Mia — disability, poverty, starvation

Julhash Mia, 40 years old, lived a semi-affluent lifestyle as a rickshaw puller prior to 1997, the year he was diagnosed with gangrene. At first he thought he was having a bad allergic reaction and he ignored the pain. In the end, both of his legs were amputated. The result was losing his job and daily income of 60 to 70 taka a day. With it he had been able to send his children to the village school and purchase goats and poultry that his wife raised. Now, he had to sell two goats and most of his chickens to cover weekly medical expenditures of 100 taka. He currently has a debt of 3000 taka. His wife, who was previously involved only in domestic chores, is now working as a maid in other households. She is subject to great ridicule from "friends" who were previously jealous of her economic well being. Julhash tried to acquire a job selling fruit on the streets, but not many buyers approached him in the market. Therefore, he has started begging every Friday outside a nearby mosque. His son had to leave school to take care of the poultry and his daughter also had to drop out to help take care of him. The family often has to skip meals; he said during the interview that he had been starving since the previous evening. Interestingly, Julhash notes how the complex context of his job, culture, and impairment could have led to a very different outcome. For instance, he states that, had he been a shopkeeper or weaver, the gangrene would not have caused his family as much in financial terms. He was a rickshaw puller, losing his legs meant losing the means to livelihood and his ability to contribute to his family's economic well-being.

Shubrat Mondol

Shubrat Mondol, age 60, has been selling CHUN (calcium carbonate lime) most of his life. He earned 70 taka a day from selling the product in the local markets. However, he became blind in 1997. Now he earns less than 20 taka per day. He notes that buyers are reluctant to deal with him, often remarking "how do you know what you are selling is fresh and good? You are Gore Kana (blind for life)." Even when he is fortunate to find a few customers, he operates on a complete trust basis, as it is impossible for him to track whether anybody is paying less than his asking price. He is unable to count the money by himself and the new currency notes released by the government are the same size, regardless of value.

Shubrat's wife used to sell ice-cream sticks in the neighborhood. She had to reduce her working days from four to two days a week in order to take care of her husband. His son lives in another village and does not contribute any money for his father's treatment. Shubrat had to take a loan of 2000 taka to pay for an operation costing 5000 taka. The remaining amount was accounted for by selling the two-tenths of an acre of land he owned. He has one daughter who had been attending school regularly. Once, he had high hopes that his daughter's education would enable her to achieve her deams. Soon after he became blind, his daughter dropped out of school to care for him at home in place of her mother, who was working multiple jobs.

Shubrat said: "I dread each day because I cannot see. I am always in fear of having an accident on my way to the market. But sometimes, I cheer myself up by thinking I am freed from seeing the hardship my wife and daughter go through every day."

Interview format

The final interview format of the first phase was composed of questions with numerical-scale responses in relation to changes in employment, assets, and household expenditures. Our reason for the three interview format of phase one was to cross-check data.

In the second phase, eight participants from "non-affected" randomly selected households were interviewed from each of the 4 sub-districts. One goal in these interviews was to learn more about the contexutal, social and economic circumstances of the participants. For instance, what factors enable households without disability to collectively and contextually avoid poverty? Moreover, we examine how the contextual factors of those labeled with disabilities differed from their non-labeled peers, the un-affected households. Fifty percent of the interviewees were women. For both phases, households were the main unit of analysis. In part, we choose our method to explore the coping mechanisms utilized by the participants. Due to poverty, often exacerbated by the contextual and cultural reality of impairment in Chuadanga, many households dealt with the depletion of common assets and combined savings as well as reduced consumption of necessities. When possible, multiple members of each household were interviewed, either individually or together, and the multiple responses were recorded for future study.

The variables examined in this research include: affected/unaffected to the landholdings, gender, age group, category of disability (if labeled) and financial circumstances, thus covering a variety of determinants. Scores on these variables did not deviate significantly from the normal distribution, making parameter tests for comparing means appropriate. For comparing mean scores on two groups, the t-test was used. Where means scores for more than two groups were compared, a one-way ANOVA was used.

For this study, poverty is measured using the Cost of Basic Needs (CBN) method. ^[3] The Bangladesh Bureau of Statistics (BBS), with assistance from the World Bank, utilized the CBN method on the Household Expenditure Survey to measure and analyze poverty in 1995/96. Utilizing this method, for the purpose of this study we consider an individual earning less than 563 taka per month, and an average household (having four members) with monthly earnings of below 2252 taka, as "poor" in the context of Chuadanga district. Due to the design of the Impact Foundation Bangladesh survey database, a commonality of the affected households is that they were labeled with a disability in 1997, which was selected as the base year representing the scenario prior to being labeled with a disability. In order to evaluate the circumstances of both affected and unaffected households, comparisons were made between the base year and the research year of 2004.

Findings

We soon realized that gathering income data accurately is a difficult task. Exact figures of annual income are not known, even by the breadwinners themselves. Almost all respondents used the Bangla words "Mone Hoye" (I think, maybe) and "Thik Moto Janina" (Don't have much of an idea), because many do not have regular jobs and most wages are pro rata. Impairment impacted our affected households in a number of ways. For instance, a few people's impairments led to premature retirement or changing to a far less profitable profession. Others in the affected households who were not impaired often had to change their daily routines and often professions to compensate for loss of income. These findings were similar to Burchardt (2000) who observed that working hours can increase or decrease if the non-disabled member has to compensate for the lost earnings, or if s/he has to leave employment to take care of the disabled kin, respectively (Burchardt, 2000).

Because, even if the monthly earnings are somewhat fixed, records of income and expenses are hardly maintained by the particpaints, the structure of households in terms of the number and occupational composition of its members serve as significant proxies for earnings in absence of reliable data. The diverse compositions of households at times lead to generalizations in terms of an "average," or most common, instance of a household.

Limited chances for employment

The village-level studies of Southern India by Harriss-White (2003) found in 1995 that more than 50% of instances of male disability and over 33% of female disability resulted in retirement. Similarliy, our findings in Chuadanga illustrate the connection between disability, unemployment and poverty. More than 90% of the particpating households identified poor health, such as the diagnosis of a disability, as the primary trigger for an economic downslide, increasing the likelihood of poverty and the difficulties associated with trying to escape it.

In our research findings, unemployment is the most common consequence for people when labeled with a disability in Chuadanga. In fact, 87% of the participants who are labeled with a disability left full-time employment within the first year after diagnosis. Moreover, the percentage of those labeled with a disability and unemployed increased annually. For participants labeled with a disability five years or longer, the employment rate fell from 14% in year one to 2% in year seven.

Type of employment

All of our participants who were rickshaw pullers prior to being labeled with a disability lost their jobs. Far less precipitous was the employment outlook for participants who were shop owners. In this profession, only 22% lost their jobs. During interviews with our participants about their daily activities on the job, it became clear to us why shop owners, whose tasks mostly involve a "sitting" routine, were far more likely to retain their jobs than rickshaw pullers. Among men, not only those who worked in manual occupations, but also those working at small workplaces (e.g. rickshaw repair shops) were more likely to leave employment after being labeled with a disability. Although some participants explain their change in employment status due to their sense of an increased vulnerability and physical discomfort, many attributed it to intolerance by their employer toward people labeled with a disability. One participant noted that his former employer related disability to inefficency in the workplace and discriminated accordingly. In the face of dwindling employment options, 3% of our participants who are labeled with a disability participate in criminal endeavors such as smuggling.

Partners in Desolation

In regard to the wives of men labeled with a disability, 90% report an increase in responsibilities of taking care of their partner. Of that, 26% forego 15 hours, and 28% forego 26 hours of paid work per week, more than prior to the disability diagnosis. The probability of becoming unemployed after being labeled with a disability is very high, yet not everyone loses their job. In our research, a significant determinant for probability of unemployment was the nature of jobs prior to being labeled with disability.

Given more than one working-aged adult in a household, disability pertaining to men is responsible for a much greater degree of economic loss as compared to disability of women, who often do not engage in external economic activity in the first place. Since 1997, the average loss of yearly earnings arising from the onset of disability of males (a loss of 16,059 taka) is seen to greatly exceed the corresponding loss for females, who have a loss of 4,149 taka. This finding is consistent with that of Erb and Harriss-White's (2001) disability study in India. Conversely, 80% of unaffected households gradually find a place in the upper rungs of the social and economic ladder, given the uninterrupted employment spans (of both male and female earners) and relatively lower medical expenditure. (The net average change — total gained — of annual income of unaffected households is 22,000 taka for men and 4,200 taka for women.)

Additional costs

Whatever the nature of additional costs to households due to a member being labeled with a disability, the extent of expenditure is heavily dependent on the type and severity of impairment. A one-way analysis of variance (N=40) gives an overall F=6.28, 3 df, p<0.05, which means that there is a generally significant difference between the mean costs for each type of disability. Specifically, orthopedic medicines for pain relief, lethargy and so on are very expensive and participants labeled with non-ambulatory disabilities have little or no need for them. Yet, there are many factors that impact employment and costs. For instance, although people labeled as blind have much lower medical expenditures than people labeled with ambulatory disabilities, they rarely continue employment. In terms of income, our participants labeled with ambulatory disabilities are three times more likely to remain economically active than those labeled as blind. The cost for people with mental disabilities is relatively higher than those with hearing and eye impairments, as they require expensive medication. Moreover, even if their treatment is undertaken at long intervals, the amount spent is extremely large because mental health treatment is costly in Chuadanga (averaging 800 taka per visit to the doctor) and rarely covered by the state hospital system.

Apart from the relative figures of income and cost, the current living standards of the people labeled with various categories of disability should be considered, as they determine the extent of adjustments that are necessary to make the physical and social environment accessible for everyone. In our study, the direct cost of treatment and equipment of affected families varies from 5 days to 1 year's worth of normal income, with the average being 4 months' worth.

Level of care relative to gender and position

Affected households that had members labeled with long-term disabilities became impoverished. However, even a short spell of illness of the earning member is enough to raise a calamity within the household. People interviewed reported that their lives come to a complete halt if the male breadwinner became ill for even a day, as they continually live on what is referred to as a "hand to mouth existence." For that day and days to come, the family has to compromise both the amount and quality of food, and even a small amount of money they may borrow for medicine is subject to high rates of interest. This often drives them to rely on household and traditional remedies, the most common being the combination of milk and turmeric to heal wounds or relieve pain. These cheaper and more accessible "health remedies" are opted for by many orthopedic patients in Chuadanga. Nevertheless, formal medical treatment is often called for, especially if the main earner is incapacitated. Therefore, treatment circumstances of the disabled individuals in question rely not only on the financial situation of the household, but also on how economically significant the disabled member is within the household composition. Consequently, expenditure is highest in the 35-44 year age group, but the difference between average expenditure of the remaining age groups is not statistically significant. A one-way ANOVA comparing the means of each of the age groups gives F=1.28, 5df, p=0.29 (N=40).

In our findings, relative expenses on treatment for the age group of 45 to 55+ is higher than that for the age group of 15 to 34. This could be attributed to the fact that the former age group, particularly for men, averages more in savings that can be used to cover treatment, whereas the younger age group may often be deprived of treatment by their parents due to economic circumstances, such as mentioned in one case the feeding of the "able" siblings.

Moreover, men in the older age groups are often considered as the heads of the households and consequently, the other, younger earning members are compelled to spend their wages on the treatment of patriarchs. The same cannot be said for women-headed households, as treatment expenditures consistently decline after the age of 44, irrespective of their household status. Generally, non-earning women are lowest on the domestic priority list for treatment but this discrimination is again a product of the extent of economic activity. In other words, an aged male member of the household who is labeled with a disability and who otherwise does not contribute much to the earnings, has a probability of being overlooked for treatment. In the study area, only working-age men were found to have undergone treatment involving major surgery. The average total spending in seven years of treatment was 15,275 taka for men and 6,850 taka for women (p<0.01).

The problems faced by women labeled with disabilities are often overlooked; if their impairment is noticed at all by others, most households associate their treatment with high opportunity cost, in terms of domestic duties foregone. Furthermore, women frequently defer their own treatment so that the cost is diverted to the economic well being of the rest of the family. These issues have made it widely understood in Chuadanga that formal health care is an option for men and hence, resources are most often allocated for the treatment of these so-called "superior breadwinners". Consequently, the debt incurred for males who are labeled with a disability is much higher than in the case of females who are similarly labeled. The average debt incurred over seven years because of disability was 2,750 taka for men and 700 taka for women (p<0.001), so the average debt for men is four times more than for women.

Even when households do have an adequate disposable income, it is more likely to be used for investments (e.g. agricultural, food resources) or repayment of debt, than for the treatment of a woman labeled with a disability. However, if a woman is fortunate enough to undergo treatment, it impacts her ability to continue her essential activites such as child care and domestic chores, because it is very rare that the male members of the household will take up these responsibilities in terms of effectiveness or duration. In her study with participants from Southern India, Harriss-White (2003) found that domestic work carried out by the women was not negotiated under any circumstances. According to Harriss-White (2003), this "burden" put on the household by women was the most common complaint put forward by male members of the households in her study with Erb in India.

Sadly, in Chuadanga, some husbands banish their disabled wives from their homes to avoid medical treatment expenses. One male participant responded to our questions about this by stating that it is "cheaper to remarry" than to bear the cost of an impaired wife, especially if she is unable "to serve the husband" efficiently. More than 16% of the participants who are married females who are labeled with a disability have been driven out of their homes by their husbands. The rate flunctuates based on the category of disability with ambulatory disabilities being the highest.

Some husbands leave their wives at their parents' homes "until she gets better," most obviously implying that the parents should take on these expenses. Therefore, desolation from economic costs borne by all family members of a person labeled with a disability, be it an adult or child, is further intensified by the subsequent strains in household relationships between members, especially spouses (Boylan, 1991). Among others, these tensions are among many of the non-economic realities of being labeled with a disability in Chuadanga. Although these difficulties cannot be calculated in numbers, the impact they have cannot be ignored and are ever present in the lives of many of the participants.

In general, women were found to be more responsible when it came to saving resources for future treatment of other family members. In fact, 17% of female participants reported that their husbands were "stealing" the family livestock or jewelry from the household and selling them to pay for alcohol or prostitutes. Men, in turn, blamed the situation on the labelling of the disability, which often led to their anxiety or sexual frustration that they cite as driving forces towards these diversions.

Fieldwork showed that women consider themselves to be disabled at a later stage of impairment compared to men, a finding very much in line with Erb and Harriss-White's (2001) work in India. In Chuadanga, it has been noticed that women working outside the home (mostly as housemaids or biscuit factory laborers) may be reluctant to leave work following the labelling of a disability regardless of the severity. Even if they do become unemployed, they remain domestically active. Therefore, even in the case of moderate to significant ambulatory and other categories of disability, women are rarely "inactive" in contrast to men.

In Chuadanga, our participants found that regardless of how effectively they were able to compensate for the loss of income due to a family member being labeled with a disability, the abrupt rise in expenditures for medicines and treatment (2182 taka for men and 979 taka for women per year) often impoverished them. When reduced income (by 16059 taka for men and 4149 taka for women per year) occurs with increased expeditures, the outcome is depletion of assets, which makes impoverishment a likely reality.

In no instances did the authors come across an affected household with upward mobility, which implies that 100% of the affected households in the sample saw a decrease in aggregate earnings following onset of impairment. The degree of economic downslide toward impoverishment is what differed, according to duration, type, severity of disability, and gender of the disabled person.

Discussion

Being labeled with a disability is a major life event but the loss of functional capacity is rarely the sole reason for subsequent desolation. As a developing country, Bangladesh is characterized by little or no access to social benefits, and hence, it is next to impossible to survive in isolation (Momin, 2001). Especially in rural areas, people are highly dependent on traditional support networks and isolation from these is enough to impair their ability to live, regardless of whether they are physically able or not (Iqbal, undated). In spite of the magnitude of misery faced by affected households, literature on the relationship between disability and economic hardships and social exclusion is scarce in Bangladesh but one need only live among the people to witness the reality.

The prime objective of this research in the search for links between disability and impoverishment was to analyze the chances of entry into chronic poverty following being labeled with a disability, and whether it is an abrupt or gradual process. The research provided thorough insight on the sequential process from being labeled with a disability to becoming chronically poor. Although we continually aimed at non-generic accounts, the examples tended toward a common picture with almost the same sequence of events and coping mechanisms leading to the inception of persistent poverty.

Our research further informs us of how people in Chuadanga who are labeled with a disbility can slide into economic impoverishment. The well-being of people who are labeled with a disability is extremely difficult to predict owing to numerous socio-economic and cultural factors. However, it is apparent from the research findings that the economic and social transitions undergone following a household's main earner being labeled with a disability can be only downhill, resulting in intense poverty and destitution. Deprived from livelihood, submerged into debt, and exposed to pain and suffering, the ramification of being labeled with an ambulatory disability was often a death sentence.

One woman we encountered on the streets of Chuadanga was begging for food on her pair of crutches. When asked what led to her current state as a beggar, she replied, "I am a woman, a widow, and moreover disabled, how could I not be poor?" Among many thoughts, her comment made us further realize how disability is one of many cultural biases that cement one's poverty. For her, disability was one of numerous categories ascribed to her identity that were negatively received and identified her as an "other." The existing barriers to economic activity, coupled with social exclusion, gradually drove many of our study participants in Chuadanga into sheer destitution. The prevalent conditions prevented their access to those opportunities that their non-disabled peers enjoyed. Be it in terms of health, employment, education, or participation in development activities, people with impairments are the poorest of the poor, being unable to exercise even their fundamental rights. Most unfortunate is that too often social stigma, rather than physical incapacity, rules their exclusion and seals their fate.

Despite variations in both the nature and magnitude of impact of different disability categories, some general conclusions can be drawn regarding the situation of the people labeled with a disability in the Chuadanga district. Compared to unaffected households, individuals in affected ones face an increased risk of entering poverty, with reduced probabilities of leaving existing poverty. When being labeled with a disability lessens their ability to work, they are left with no means for their livelihood, a situation worsened by the lack of access to adequate social services, as is the case with people in Chuadanga. The findings show that the immediate effects of disability on employment are serious. Most people have to leave jobs following being labeled with a disability, while some may be able to retain employment temporarily, though working conditions and deteriorating health eventually force them to quit. Some people switch jobs from manual to less physically demanding ones, but then they have to start from scratch in terms of experience or familiarity, making their wages far less than those prior to onset. The loss of earnings is further intensified by rapid increases in medical expenses.

The consequences are often far worse for women than men. Discrimination against women is often manifested in a lack of concern over their care when labeled with a disability when compared to that of the male counterparts (Harriss-White, 2003). Ironically, the findings of our research show that it is women who compromise the most when other family members are impaired, fighting against time to adjust between employment, caring, and usual domestic responsibilities. Females are usually blamed for their own disability or that of their children. They carry the guilt of hampering the marriage possibilities of themselves and their siblings. Moreover, there is the constant fear of being driven out of their husbands' homes owing to their physical "incapacity." Women from affected households are even marginalized from access to micro-finance schemes, as their non-repayment is considered certain.

Regardless of how strongly a household can combat the loss of earnings, in Chauadanga the abrupt rise in expenditure for medicines and treatment (2182 taka for men and 979 taka for women per year) can pull them down in their efforts to leave the state of economic hardship. When reduced income (by 16059 taka for men and 4149 taka for women per year) joins hands with rising expenses, the outcome is depletion of assets, which makes impoverishment more certain. In addition to economic turmoil, the people labeled with a disability were often excluded from many realms of society, which stagnated their development. The traditional support network has inherently been a part of all rural people's lives (Momin, 2001) and social exclusion deprives people with impairments of moral well-being, especially because they are in most need of social support. As the findings show, exclusion comes from the negative stigma associated with disability, coupled with the difficulty for members of an affected household to manage the free time necessary to (re)build social networks. The isolation of disabled people takes different forms; they may be ignored, constantly ridiculed, or even showered with overstated sympathy, making them feel more uncomfortable than relieved. In addition, people labeled with a disability were deprived of relief funds and other assistance arriving at their village owing to the challenges they face in mobility. Regularly, their "healthy" peers fought their way to the front of queues for food and other aid and could wait for prolonged periods.

Poverty is devastating in itself, and quite evidently can be even more overwhelming for people labeled with a disability and their families. The policy context to tackle the issues of disability and poverty is beyond the scope of this research, but it is appropriate to state that "If development is about bringing excluded people into society, then disabled people belong in schools, in legislatures, at work, on buses, at the theatre and everywhere else that those who are not disabled take for granted" (Wolfensohn, 2002, p. 25).

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Endnotes:

¹ ESCAP, Social Development Division: Asian Pacific Decade of Disabled Person (1993-2002). http://www.unescap.org/decade/publications.htm (cited in Iqbal, undated).
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² This model holds disability as some ailment present in a person's body, and aims to develop diagnoses, cures, or at times, simply labels for the relevant condition (Kaplan, undated).
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³ The Cost of Basic Needs (CBN) approach, as followed by Bangladesh Bureau of Statistics (BBS), defines the poverty line as the sum of the Food Poverty Line and Non-Food Poverty Line. Food Poverty Line refers to per capita monthly expenditure required for purchasing food bundles to meet the set minimum calorie requirement of 2,122 kcal per day per person. Non-Food Poverty Line represents the minimum non-food expenditure to meet basic needs. Source: Japan Bank for International Cooperation, 2001 (For a comprehensive discussion of the CBN method, see Ravallion (1994). For further explanation of the upper and lower poverty lines under the CBN method, see Wodon (1997).
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