Introduction Disability and poverty: a global challenge
Introduction Disability and poverty: a global challenge
Abstract and Keywords
This book is about being disabled and being poor and the social, cultural, and political processes that link these two aspects of living in what has been characterised as a ‘vicious circle’. It is also about the strengths that people show when living with disability and being poor: how they try to overcome their problems and make the best out of what little they have. The book aims to provide cross-cultural perspectives on the situation of living with a disability and being poor. This chapter discusses disability and poverty; poverty dimensions such as absolute poverty and relative poverty; the disability concept; the vicious circle of disability and poverty; overcoming poverty for people with disability with opportunity, empowerment, and security; and research on poverty and disability.
Disability and poverty
This book is about being disabled and being poor and the social, cultural and political processes that link these two aspects of living in what has been characterised as a ‘vicious circle’ (Yeo and Moore, 2003). It is also about the strengths that people show when living with disability and being poor: how they try to overcome their problems and make the best out of what little they have. It is a book about those who we will call ‘the heroes of everyday life’.
The book aims to provide cross-cultural – and cross-national – perspectives on the situation of living with a disability and being poor. Through this we hope to illustrate how barriers to participation manifest themselves differently – and similarly – in different contexts, and how the coping strategies of people involved (the person with a disability and their family members) emerge in different settings. We hope to bring forward the necessity of culturally sensitive approaches to disability studies and rehabilitation, and to counteract some of the cultural arrogance that Europeans and North Americans tend to bring into this field, assuming that what seems important or relevant for them is the same all over the world.
A new focus on poverty has arisen with the United Nations (UN) Millennium Development Goals (MDGs) (UN, 2000), and with the establishment by the World Bank and International Monetary Fund (IMF) of various new aid instruments and procedures designed to reduce poverty. However, disability was not explicitly included in the MDGs and Yeo and Moore (2003), for instance, state that poor people with a disability have been left out of the MDGs and such poverty-reducing efforts. While this may have hindered a focus on disability and poverty initially, disability and poverty have since been included in the monitoring of MDG implementation, possibly due to the more recent UN Convention on the Rights of Persons with Disabilities (UNCRPD) (UN, 2006). The UN report on MDGs and people with disabilities (UN, 2009) states very clearly that ‘MDG related policies and programmes have not fully addressed or specifically included disability and persons with disabilities’ (p 20). Although a review of 80 MDG country reports revealed that about half of these reports made some reference to disability (p 5), (p.2) lack of sufficient and appropriate data on the situation of people with disabilities continues to hamper inclusion of disability and individuals with disabilities into the MDG monitoring and evaluation process.
Except for the absence of disability in the MDGs, a global commitment to ensuring people with disabilities equal access to social and economic opportunities is nevertheless largely in place (Albert, 2005). This is expressed by the UN in the World Programme of Action (WPA) concerning people with disabilities (UN, 1982), in The standard rules on the equalisation of opportunities for persons with disabilities (UN, 1994), in the 1996 Resolution by the European Union (EU, 1997), and in the World Health Organization (WHO) resolution on disability (2005). These international documents are all part of the same global commitment which is further underlined through the UN Convention (2008). With the Convention, ratifying states are legally bound to ensure the realisations of a number of fundamental rights that, taken together and supported by official documents at national level in high-income as well as low-income countries, represent a political framework for breaking the disability–poverty link. Furthermore, disability issues in relation to poverty and development have for some time been acknowledged by the World Bank, as demonstrated in the following citation:
With the Convention and the remaining political framework in place, the crucial issue now for reducing poverty is knowledge-based implementation and service delivery. The need for high-quality data about the situation for people with disabilities has been underlined by many authors (Elwan, 1999; Metts, 2000; Yeo and Moore, 2003; Eide, 2010) as well as the UN report on MDGs and disability (2009). For instance, we do not know whether the reduction in number of poor people in many emerging economies particularly in Asia has benefited people with disabilities, and we do not know how the situation for people with disabilities has developed in stagnating economies, in particular in Africa. The effect of globalisation on the living conditions among people with disabilities is a key area for disability–poverty research that needs to be better understood. However, a mapping and monitoring system is simply not in place in low-income countries, yielding a weak knowledge base for including people with disabilities as well as other vulnerable groups in research that can effectively inform poverty alleviation programmes.
People with disabilities in developing countries are over-represented among the poorest people. They have been largely overlooked in the development agenda so far, but the recent focus on poverty reduction strategies is a unique chance to rethink and rewrite that agenda.
One of the Millennium Development Goals is the eradication of extreme poverty and hunger, a goal that cannot be achieved without taking into consideration a group of people that is so disproportionately represented among the world's poorest people.
(p.3) The uniqueness of the disability perspective is that it has to do with poverty within poverty. In low-income countries and areas people with disabilities are among the most vulnerable. They are often the first to die when sanitary and food conditions become critical. They do not get to the hospital because transportation cannot be paid for. They are the last to get jobs when employment is scarce. They are often the last in a group of siblings to be sent to school if the parents can only afford shoes and school uniforms for some of their children, or they may simply be blocked from any education due to lack of resources in the schools or other poverty-related barriers in their environment (see Chapter Four, this volume).
The UN Development Programme World Development Report 2000/01: Attacking poverty (UNDP, 2002) lists the following main causes of poverty:
• Lack of income and assets to attain basic necessities – food, shelter, clothing and acceptable levels of health and education (opportunity).
• Sense of voicelessness and powerlessness in the situations of state and society (empowerment).
• Vulnerability to adverse shocks, linked to and inability to cope with them (security).
Poverty is a multidimensional concept that cannot be narrowed down to economic measures alone. According to Wolfensohn and Bourguignon (2004), ‘poverty is now seen as the inability to achieve certain standards’, poor people ‘often lack adequate food, shelter, education, and health care’ and ‘they are poorly served by institutions of the state and society’, p 4.
There are three aspects of poverty that must be taken into consideration. They are embedded in the concepts of absolute poverty, overall poverty and relative poverty. Absolute poverty is poverty as measured by global standards and compared across countries and population groups. Income per capita is one such measure and ‘one dollar a day’ is the international indicator most often used. By such measures, about 1.2 billion of the world population may be characterised as absolute or extremely poor (UD, 2005). Absolute poverty was also defined by the World Summit for Social Development in Copenhagen (UN, 1995) as ‘… a condition (p.4) characterised by severe deprivation of basic human needs, including food, safe drinking water, sanitation facilities, health, shelter, education and information. It depends not only on income but also on access to services’.
Overall poverty takes various forms, including:
Relative poverty is a poverty measure based on a poor standard of living or a low income relative to the rest of the society in question. Unlike overall poverty it does not necessarily imply that physical human necessities like nutrition, health and shelter cannot be met, but rather that the standards achieved by some people are comparably less than what is common in that particular society (Nielsen, 2009).
… lack of income and productive resources 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 characterised by lack of participation in decision making and in civil, social and cultural life….
In this book we will approach different dimensions of poverty, by exploring the experiences of people with disabilities, and also through a comparative design with unique data on living conditions among people with and without disabilities.
The disability concept
The International Classification of Functioning, Disability and Health (known more commonly as ICF) officially endorsed in 2001, represented a culmination of a discourse on disability manifested as a medical or social phenomenon. ICF changes the balance in this discourse from bodily and individual shortcomings, to the sociocultural and physical barriers to participation. It is questionable to what degree the ICF model of disability is still embedded in medical thinking, but according to Shakespeare (2006), ICF is an attempt to establish a ‘biopsychosocial’ model that can be said, to some extent at least, to integrate two previously conflicting models of disability, that is, the medical and the social models. With the establishment of ICF, disability is now defined as ‘the interaction between the environment and the person with an impairment’ (WHO, 2001). In biomedical contexts, where individual diagnoses and decisions of treatment are made, the medical model, with its individual focus, will still prevail. But the fact that the net of attention is being cast wider than before will gradually also influence the medical focus. ICF clearly has limitations in not giving subjective aspects of participation sufficient attention (Imrie, 2004; Hammel et al, 2008), and this book attempts to meet this challenge by exploring the subjective experiences of disability and participation.
The social model is well suited for analysing the problem of disability and poverty in that it pays attention to the context in which the life of the poor person (p.5) with a disability is lived, and thus makes it possible to focus on the relative as well as the relational aspects of poverty. The weakness of the social model has recently been discussed by Shakespeare (2006), pointing to the lack of balance and thus the absence of the individual and his/her experience in the discourse. The new and interesting aspect of ICF is the possibility to downplay the medical–social model distinction and rather to view the individual with a disability as a whole person with individual and contextual/social differences that contribute to the manifestation of the discrimination of human beings globally.
The vicious circle of disability and poverty
The fact that disability may create or make poverty worse is obvious. With often limited access to education and physical barriers to overcome, people with disabilities are most often severely disadvantaged on the employment market and, if employed at all, often get low-paid jobs and even lower salaries than their non-disabled colleagues. There are many examples of the extreme economic exploitation of individuals with a disability, for instance through organised begging.
When poverty is widespread, persistent disability may be an additional dimension rather than a fundamental cause (Yeo and Moore, 2003). Thus, the mechanisms linking disability and poverty may differ between contexts depending on the character of poverty, and thus also between high-income and low-income contexts. This will also apply to strategies for poverty alleviation. It is, for instance, clearly indicated that the recent introduction of a disability grant in South Africa has given individuals with disabilities and their households a better economic situation than many households without members with a disability (Loeb et al, 2007) (see also Chapter Six, this volume). When poverty is endemic, even a limited grant may constitute a major step forward and not least reduce income security among people living on the outskirts of the modern economy. In developed countries disability grants or pensions may, on the other hand, be regarded as a poverty trap as they contribute to exclusion from the labour market and result in a comparably low life income. Level of living and participation in society is closely linked to work in developed countries, while social life and participation is less dependent on work and income in developing contexts.
What is sometimes less obvious is the way that poverty influences, or creates, disability. Being poor may delay people in seeking help with health problems that are normally curable. Thus, for instance, eye or ear problems may lead to permanent blindness or loss of hearing. Difficulties in labour may be brought to medical attention at a stage where it is too late to save the baby from permanent brain damage, leading to cerebral palsy and/or mental disability or epilepsy. Such delay is usually caused by long distances to health facilities combined with lack of money for transport. Lack of knowledge about where and when to ask for help may also play a role. Poor people also live under worse hygienic conditions (lack of sewage systems, lack of access to clean water) than the wealthier part of the population and have less access to nutritious food. Thus they are exposed to (p.6) bacteria and viruses that may cause lasting impairments and have less resistance to them because of malnutrition. Malnutrition in pregnancy may also cause developmental delay and/or make the newborn more vulnerable to infections (see Chapter Nine, this volume).
Often people are aware of the dangers they are exposed to, but poor people have fewer opportunities to change their habitat or way of life in order to avoid such risks to their health. Thus, mothers in the squatter areas near Nairobi feel that the low-hanging high voltage electric power lines that cross the valley may be the cause of (what they feel is) a high incidence of epilepsy in children. They have, however, no way of avoiding them since they need to live close to the factories that employ day labourers on a ‘first come’ basis, and cannot afford to pay for better housing (see Chapter Eight, this volume). Similarly the poor farmers in Cambodia are quite aware of the danger of mines when they go out to plough their fields or clear new areas of land, but they have no other choice but to do so. Areas already cleared of mines have been taken over by politicians and rich landowners; mines are plentiful in the uncleared areas (see Chapters Ten and Eleven, this volume). Other types of dangerous and disability-causing working conditions also tend to be the fate of poor people. In the often poverty-stricken rural areas of Botswana and South Africa there are many young men in wheelchairs – casualties from dangerous and insecure work in the mines that bring wealth to state treasuries in the same countries, as well as to companies and individuals nationally and internationally (Ingstad, 1997). Poor people also tend to live in the most polluted areas, and are the first victims when accidents occur, such as the Bhopal disaster in India in 1984.
Cultural beliefs and attitudes also tend to have more bearing on the life situation of the poor than on the wealthy. In a study from Somalia comparing the life situation of two boys with comparable intellectual impairment, Helander (1990) has shown how the boy coming from an affluent and respected family was accepted by community members and treated differently (better) than the boy who was a poor orphan. This also had a bearing on the labels placed on their impairments, and the explanations given for them. Thus poverty and low social standing are factors that interplay with cultural beliefs, and have a bearing on the way a disability is culturally labelled and the way stigma (Goffman, 1963) may, or may not, be applied. This, in turn, affects opportunities for participation in the daily life of society.
Poverty may also affect the marriage chances of people with disabilities, which, in many societies, affects their standard of living and their possibilities of being considered fully respected members of their communities. In countries in which bride prices are paid, girls with a disability, if married at all, may bring less cattle (or similar value), if any, to their families than non-disabled girls. While in countries with dowries families may have to pay more for their disabled daughters to be married off, or alternatively marry them considerably below their social standing in order to find a partner and family willing to take them. Thus, disabled girls from a lower middle-class background may be married into poverty. In most (p.7) cases, however, people with disabilities, especially girls, have problems finding marriage partners – with or without money (Sentumbwe, 1995). For instance in Yemen, while practically all young men with a disability plan to get married in the future, no girls with a disability consider marriage an option (see Chapter Seven, this volume). For girls with a disability from well-off families education may be considered an equally attractive option, while girls with disabilities from poor families foresee a future remaining for the rest of their lives in their parental home or the home of a sibling, and risk being considered a burden.
Religion may also be an important factor when it comes to influencing the lives of poor people with a disability. It may provide an explanation for why disability occurs, for instance by stigmatising it as a ‘sin’ or less stigmatising, as ‘fate’ or ‘karma’. It may also give rules for the behaviour of men and women respectively, and the consequences of such rules may be more severe for the poor than for the more affluent person with a disability. In Yemen, men and women are supposed to live in separate spheres of life, secluded from each other in space; women wear a black veil that fully covers their body and their faces (abaya), with only the eyes being visible to men other than their father and brothers. Women cannot go outside the house on their own, and must be accompanied by their father or a brother. Poor disabled women are for the most part housebound due to lack of money for transportation and limited accessibility for wheelchairs (if they have one) on the rugged streets of the poor housing quarters or steep hillsides of the villages, while economically better-off disabled women may participate in the social life of the family and neighbouring women by being driven in cars or pushed in wheelchairs (see Chapter Seven, this volume).
Finally, poor people, and especially poor people with a disability, are particularly vulnerable in times of war and in connection with major disasters. We hear about the impacts on civil societies in war-torn places such as Iraq, Syria and Palestine, to name but a few, but rarely about what happens to people with disabilities who are trapped in the fighting. It seems reasonable to assume that poor disabled people lacking the means or ability to get away, and often living in poorly constructed houses, are especially vulnerable (Kett et al, 2005; Eide, 2010; see also Chapters Five, Ten and Eleven, this volume).
Overcoming poverty for people with a disability
In discussing how to overcome poverty in general the following three points have been made which also have a bearing on the situation of poor people with a disability:
Important sources of empowerment for people with disabilities are their own organisations or interest groups. Often, however, the headquarters of these organisations are located in the cities, and the extent to which the leaders of the organisations identify themselves with, and work for the interests of, the poor and often rural people with a disability vary greatly. It is also a problem that these organisations most often rely heavily on funding from international non-governmental organisations (NGOs), and thus are more subject to their priorities than to the needs and requests of poor people with disabilities. In order to overcome poverty by empowering the poorest disabled, these people too must be given a voice. Another important source of empowerment is education, which is often inaccessible to poor people because of lack of money for transport or barriers caused by the physical or social environment (see Chapter Four, this volume).
Security is a basic requirement for all people, and even more so for those who face limitation in their mobility, in the use of their senses or in their intellectual capacity. People with a disability often lack such basic security, and those who are poor even more so than others. They are at risk, even in the womb, by selective abortions; the danger continues into childhood with infants and children with a disability being especially vulnerable to malnutrition, infections and early death (see Chapter Nine, this volume), and as adults, by discrimination, abuse and exclusion from various arenas of life.
Poor people with disabilities need special considerations but they also need to be part of a general development of their country and community to lift individuals and households out of poverty (see Chapter One, this volume). A person with a disability is unlikely to fare better than the average of non-disabled people he/she is living with or among (see Chapter Three, this volume). Thus, disability as a cross-cutting theme must be brought into all poverty reduction work and research (Yeo and Moore, 2003).
Research on poverty and disability
Poverty-focused research looks at factors that directly inhibit poor people with a disability, and produce or reproduce conditions of deprivation and inequality. We are today far from the ideal goal of seeing disability as a cross-cutting theme in all poverty reduction work and research, and what little research has been (p.9) done so far on the link between ‘poverty and disability’ has been done from two different perspectives:
• macro perspective, mainly in the form of prevalence studies and comparative surveys on key indicators of level of living;
• grass-roots perspective, giving people a voice and bringing forth experience near narratives.
Research on disability and poverty faces two major problems. First, relatively few researchers have taken an interest in and published in this field, particularly regarding developing countries. Second, a lack of standardised definitions and research instruments on disability provides a meagre basis for comparative studies, even in developed countries. With the introduction of ICF we have a better basis for developing international comparable disability statistics that may also contribute to research on disability and poverty (Üstün et al, 2001). The Washington Group on Disability Statistics1 has been tasked to develop standard measures on disability based on the ICF framework and has so far produced a set of screening questions that may be applied globally. The debate about disability prevalence and the methods for screening for disability has recently been challenged by Loeb and Eide (2006; Loeb et al, 2007) who, in applying the screening questions developed by the Washington Group, have demonstrated that even with a tested standardised instrument there is still the same problem of where to draw the line between disabled and non-disabled. The authors suggest responding to this challenge by applying different prevalence measures based on the Washington Group screening questions. Eide and Loeb (2006; Loeb and Eide, 2006) also argue that in viewing disability as a continuous rather than dichotomous variable, new possibilities arise for disability statistics and for analysing the relationship between disability and poverty.
Several authors have pointed to the lack of data to analyse the disability–poverty relationship (Elwan, 1999; Metts, 2000; Yeo and Moore, 2003). While a number of studies have shown that people with disabilities in developing countries are worse off than their non-disabled counterparts on a small number of economic and social indicators, few of these studies offer an opportunity to study the relationship further. Recently, several national representative studies on living conditions among people with disabilities have been undertaken in the southern African region (see Chapter Three, this volume). These studies offer an opportunity for comparative analyses of differences between disabled and non-disabled people on a number of indicators of level of living, and also the opportunity to generate new statistics on disability and poverty.
The ‘grass-roots’ perspective is often taken in studies based on qualitative, mainly anthropological, methods. So far we have few such studies focusing specifically on poverty, but two anthologies edited by Ingstad and Whyte (1995, 2007) present in-depth studies of the lives of people with disabilities, many of them from poor rural settings, as does a monograph by Ingstad (1997) on the implementation of community-based rehabilitation in rural areas of Botswana struck by drought and poverty.
One of the most promising theoretical approaches to analysing the links between disability and poverty is through the use of the concepts ‘social suffering’ and ‘structural violence’ (Kleinman et al, 1997; Farmer, 1999, 2004, 2006). Social suffering is imposed on people by conditions outside their control. These may be political, economical, ecological or others. By seeing suffering as social in its basic character, the blame and guilt is taken away from those who are suffering and placed on these outside forces. For instance poor farmers in drought-stricken rural Zimbabwe are not to be blamed for the early death of their disabled children, but rather the politics that forced them to move from their fertile lands, and gave them no kind of support when drought struck or when thirsty elephants invaded their land to eat their crops (see Chapter Nine, this volume). By focusing on social suffering we take the responsibility for the consequences of poverty away from the poor. Structural violence is the violence of everyday life that causes social suffering, as well as the extraordinary violence of war and other disasters that are beyond the control of the individual person with a disability and his/her family. By using these two concepts in (some of) the analyses of this anthology, we seek to give a voice to poor people with disabilities by bringing forward experience through narratives.
The contributors to this book have different reasons for entering into the field of studying the lives of poor individuals with disabilities in the so-called developing countries. It is our intention that the content of the book reflects our deep respect for people who struggle with poverty and are faced with discriminatory practice. It is a great loss to society that millions of individuals in developing countries in particular are not given the means to fulfil their desires or to contribute fully to the societies of which they are a part. It is of the utmost importance that research in this field has an emancipatory strategy in being an active part in the continuous struggle for improved living conditions for all individuals with a disability. We believe that this requires the involvement of people with disabilities in research and researchers who see the value and necessity of sharing and handing over power in the research process to the people with disabilities themselves. Only in this way can research be instrumental in building the capacity among people (p.11) with disabilities and be able to influence political processes and shape the society of tomorrow.
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(1) The Washington Group on Disability Statistics was formed as a result of the UN International Seminar on Measurement of Disability that took place in New York in 2001. The National Center for Health Statistics authorised the formation of a city group to address some of the issues identified in the International Seminar. See www.cdc.gov/nchs/citygroup.htm for further information.