Epilogue Some concluding thoughts: the way ahead
Epilogue Some concluding thoughts: the way ahead
Abstract and Keywords
Disability and poverty, and the relationship between the two, are complex and dynamic phenomena, and thus not easy to grasp in one theoretical model or within one scientific paradigm. Explanations of the disability–poverty circle may be social, structural, political, and cultural. It is interesting that the challenge to most literature on disability and poverty emerges through the voices of the poor and disabled themselves. This book provides an insight into the lives of people with disabilities living in poverty, and the vulnerability implied by living in poverty. Individuals with disabilities have struggled to survive under very difficult conditions, bringing evidence to the fact that they also represent a tremendous resource which can be used to improve the situation for the poorest of the poor. Without this expertise, and without challenging and breaking up established power structures, the fight against poverty will be jeopardised.
Disability and poverty and the relationship between the two are complex and dynamic phenomena and thus not easy to grasp in one theoretical model or within one scientific paradigm. As exemplified in the chapters in this book, explanations to the disability–poverty circle may be social, structural, political and cultural. A refreshing, and even provoking, perspective is brought forward in questioning the very distinction between the two (Hansen and Sait, Chapter Six). As both concepts have developed, they may at least be seen as overlapping. It is particularly interesting that this challenge to most literature on disability and poverty emerges through the voices of the poor and disabled themselves. This demonstrates the potential value of the particular methodological approach in this book and that disabled people and poor people have something to offer in the development of our understanding of the disability–poverty relationship.
It has not been the purpose of this book to develop or test a model of disability and poverty but rather to disentangle the complex relationship through a combination of perspectives, and in particular through the voices and experiences of individuals with disabilities themselves. We, as authors, believe that this is necessary in order to fully understand the working mechanisms behind the persistent situation of ‘poverty within poverty’ (Yeo and Moore, 2003) faced by a large number of individuals with disabilities, particularly in low-income countries. This is, however, not to say that other perspectives that are not included here are important and necessary in this endeavour, but without a systematic approach to the lived experiences of those who struggle within the ‘vicious circle’ (Yeo and Moore, 2003) we will only be able to scratch the surface of a huge global problem. Through the voices represented in the various contributions in this book, poverty emerges as the main problem for disabled people in poor contexts, and the dynamics of poverty strongly contributes to keep disabled people within the ‘vicious circle’.
With the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001), the World Health Organization (WHO) has evidently contributed to the discourse on the concept of disability. While the time period following the previous WHO model (International Classification of Impairments, Disabilities and Handicaps, ICIDH) (WHO, 1980) was marked by a pronounced contradiction between the medical and the social model of disability, ICF may be seen as an attempt at merging the two and bringing the development of a universal model a (p.226) few important steps forward (Shakespeare, 2006). Two of the chapters in this book (Eide and Loeb, Chapter Three and Braathen and Loeb, Chapter Four) are (partly) based on research that has aimed at utilising ICF by exploring new methods for survey-based measurement and analyses of disability (Eide and Loeb, 2006; Loeb and Eide, 2006). This type of research has the potential to contribute to the further development of a theoretically based conceptual framework for disability studies. In this endeavour different types of knowledge are needed, however, and there are certainly limits to the basically quantitative approach represented by ICF. Individuals' interpretation and understanding of their subjective experiences and situations are outside the scope of this book. This implies that an important perspective, that is, the perspective of the disabled people themselves, falls outside of the ambitions of ICF and that it is also necessary to look outside this framework to obtain a more complete understanding on how it is to live with a disability in different contexts, including the relationship with poverty. Without this perspective we run the danger of generating knowledge that may represent poor guidance for changes at policy level. A culture-sensitive approach to disability and poverty, in our view, quite simply requires an understanding of individuals' values, interpretations and understanding, as these are fundamental aspects to influence, utilise and/or incorporate for any sustainable change to take place.
Attitudes and even more so culture represent established patterns for understanding and reacting to a phenomenon. No doubt we can identify established and culturally rooted discriminatory practices that affect individuals with disabilities and their families, as for instance in the gender differences in Yemen (Ingstad, Baider and Grut, Chapter Seven). Cultural patterns are, however, not static, not even homogeneous in a society, and influenced by collective understanding and practices, and by structural and social factors (Ingstad and Whyte, 1995). While poverty is largely the result of structural and often international/global phenomena (see, for instance, Chapter Ten), a situation of permanent living in poverty will affect social relations as well as attitudes and, over time, cultural beliefs, and thus also how individuals with disabilities are treated. As described by Grut, Olenja and Ingstad (Chapter Eight), discrimination against disabled (children) may easily be seen as negative cultural practices, while another explanation may be that it is simply a forced reaction to poverty, largely a mechanism of survival or absence of options. Hansen and Sait (Chapter Six), on the other hand, describe a situation whereby collective efforts and solidarity contribute to change people's understanding and thus challenge the political and structural level in society.
The distinction between explaining discrimination and negligence of the needs of disabled people by culture versus poverty has direct bearings on how researchers, policy makers and other groups external to the situation perceive possibilities for breaking the poverty–disability circle. Emphasising culture may easily lead to inaction, as this is often regarded as stable phenomena or at least slowly changing over generations. Although influence, change and heterogeneity within nations and geographical areas are key aspects of culture, even in a globalised world, (p.227) patterns of meaning and practices will still be understood as relatively stable or slowly evolving, and sometimes even reinforced as social reactions to external influence (Friedman, 1994).
The structural level is one obvious level for explaining the persistent relationship between disability and poverty. As analysed by Sagli and Fjeld (Chapter Two), increased political interest for disability policy and development of health and rehabilitation services has not been able to provide necessary health services for the disabled rural population in China. A market economy, urban and gender bias combined with the particular political structures of a one-party state has produced a situation whereby services are provided for the most able-bodied of the male, urban disabled, while the poor, rural disabled are hit by increasing costs and inadequate health services in a situation of rapid economic growth. Likewise, the analysis of policies and instruments in Malawi and Uganda by Wazakili et al (Chapter One) reveals that a disability perspective is easily sidelined in poverty reduction efforts if not specifically incorporated in the process. The contradiction between the policy level and the reality of disabled people living in poverty is further demonstrated in the study by Hansen and Sait in South Africa (Chapter Six), where the introduction of a medically and individually based disability grant is countered by culturally based solidarity and understanding of disability.
Structural phenomena may be regarded as relatively stable. It is, however, evident that they can change quickly and be directly targeted for intervention. Several of the chapters in this book focus largely on structural and political phenomena for explaining the poverty–disability circle (Chapters Two, Nine, Ten and Eleven), that is, on phenomena that may be changed at a political level, either nationally or globally. Sagli and Fjeld (Chapter Two) demonstrate how shifts in economic and health policy and country-specific power relations have influenced the situation for disabled people in China, in practice creating more disability and strengthening the relationship between disability and poverty due to increasing health costs. In South Africa (Chapter Six) the introduction of a disability grant has contributed to social change and an emergence of a popular-based understanding of disability that counters the intentions of the policy.
Reflecting on the consequences for disabled people of political and structural changes, it may be argued that without putting the needs of individuals with disabilities in the forefront, there is a risk for maintaining the disability–poverty relationship even if this was not intentional and even in cases where the intention was to alleviate poverty. As seen in the example from Uganda and Malawi (Chapter One), the voices of the poorest of the poor are easily sidelined, even when they are crucial in combating poverty. Likewise, Muyinda and Whyte (Chapter Five) demonstrate that the exclusion and/or marginalisation of disabled people in essential service development in Uganda results in the needs of disabled people not being met, and consequently contributes to drive individuals and families further into permanent poverty. These and other examples illustrate very clearly that mechanisms are needed that ensure that the voices of disabled people are heard and acted on.
(p.228) Husum and Edvardsen (Chapter Eleven), and in particular Chapter Six by Hansen and Sait, challenge the very distinction between poverty and disability; poverty is disability. Consequently, combating poverty equals the reduction of disability. This may be a very fruitful and not least politically powerful perspective in contexts where poverty is endemic and the consequences of poverty are particularly severe for individuals with impairments and their families. The view is further interesting in relation to the Millennium Development Goals (MDGs) (www.undp.org/mdg/) and the efforts of the international community to eradicate poverty. While the MDGs have been criticised for not including disability (Albert, 2006), it may thus be argued that it is all about disability in the sense that eradicating poverty will also imply preventing disability, alleviating consequences of disability, and eradicate disabling conditions. This may, however, be questioned simply by observing the situation globally. In many societies at different levels of welfare and economic state, there is a persistent pattern of disabled people being poorer and less engaged and participating in society, for instance through employment and education, than non-disabled people. Bringing people out of poverty will thus not in itself eradicate disability and disabling conditions, regardless of the level of understanding of disability. Many of the mechanisms that sideline individuals with disabilities in society are at work in developed welfare states as well as in poverty-stricken countries. This implies primarily that disability, discriminatory practice, cultural beliefs, environmental barriers, supply of equitable basic services, etc, all need to be integrated in poverty alleviation efforts in order to ensure that disabled people benefit in an equitable manner. Otherwise, the risk is that a segment of society, that is, individuals with disabilities and other vulnerable groups, will remain in poverty while a successful reduction on the poverty rate is celebrated. The examples from Uganda and Malawi (Chapter One) have shown how easily sidelined disability issues are in poverty reduction efforts.
Individualisation of disability as we can find in the Western/Europeandominated discourse on disability has its evident limitations when the main problems are structural and political. It is in this perspective interesting that recent development of our conceptual understanding of disability, with the ICF as the current culmination of this development, has, in fact, incorporated social and political structures (environment). Phenomena at this level are thus accepted as being central parts of ‘the disablement process’. While cultural, social, political and structural phenomena clearly can cause poverty and disability, we do not, however, understand these contributions as presenting arguments against the relevance of the individual level. Rather, in poverty-stricken contexts, political and structural changes will be cardinal to allow people to live their lives in dignity and to be able to fulfil their potential, contributing to their families and communities. The different levels of explanation are intertwined, and it would be a mistake to discard individuals' own efforts, as exemplified in several of the chapters in this book. Individuals with disabilities living in poverty do struggle to survive and to make the best out of their situation – and there are encouraging examples of individuals who have used their disability as a resource for themselves and (p.229) for others in their community. The distinction between the political/structural level and the individual level is a reality, however, and many individuals with disabilities are born into or brought into poverty by forces outside themselves and their families. Bearing in mind the dangers of victimisation and defaitism, it is nevertheless evident that structural and political changes are crucial for breaking the poverty–disability circle. It is particularly important to underline this as the understanding of disability often centres around the individual. Even ICF, with its attempt at incorporating environmental/social factors, basically represents an individual understanding, at least if this is not challenged and the environmental aspects are not further developed and strategically utilised.
The concepts of social suffering and structural violence are particularly useful in understanding the situation for disabled people living in poverty. Social suffering is the result of social, political and structural violence inflicted on people, creating the reaalities of poverty that constantly limits people's possibilities (Kleinman et al, 1996; Farmer, 2004). There is thus a clear link from the environmental barriers individuals with disabilities experience in their daily life, and the structural level. The link between structural violence and the suffering of disabled people directly due to political decisions, absence of political action and structural problems and barriers is thoroughly described and analysed by Muderedzi and Ingstad (Chapter Nine), and Husum and Edvardsen (Chapter Eleven).
As argued by Wazakili et al (Chapter One), inclusion of disabled people in poverty reduction processes is crucial for the effectiveness of such programmes, but obvious obstacles are identified. While inclusion of civil society in government decision-making processes may not always be understood as important due to lack of consciousness about the poverty–disability relationship, it is also often the case that organisations representing disabled people may be weak and/or inexperienced. Some of the very same mechanisms that drive disabled people into poverty will also cause political marginalisation and resource deprivation in the disability movement. The two contributions in this book focusing particularly on involvement of disabled people in the political process tell two very different stories. While Sagli and Fjeld (Chapter Two) describe a very well organised and powerful organisation in China, Hansen and Sait (Chapter Six) describe the emergence of organised resistance against the health authorities and the way of implementing the disability grant in South Africa. While the first is an example of how the movement is coopted into power structures but still unable to avoid increasing poverty among disabled people due to increasing health costs, the example from South Africa may be seen as resulting from failure in engaging the disability movement. The point here is that these very different examples highlight the need for a disability perspective on social reforms that is not necessarily achieved without a thorough analyses of the context and the situation. Effective involvement of disabled people in poverty reduction strategies is bound to challenge established power structures, which may be why this seems to be complicated.
Both disability and poverty are dynamic phenomena in the sense that there are many interrelated, changing and contextually rooted mechanisms involved. (p.230) The contributions in this book confirm that poverty and disability are closely interconnected and that this relationship and its persistence are caused by social, cultural, political and structural phenomena. However, not all individuals with disabilities in low-income countries are poor, and there are some fascinating examples of individuals with disabilities who have been able to break the poverty–disability circle and even been able to utilise their disability status as basis for their (relative) success (for instance, Hansen and Sait, Chapter Six, and Grut, Olenja and Ingstad, Chapter Eight). At least such examples may invite a critical view on relying solely on structural phenomena when analysing disability and poverty.
Some major lessons may be drawn from the insights brought by the authors. First, the different levels of explanation, which is also where the keys for breaking the poverty–disability circle may be found, cannot be viewed separately from each other. Policy changes with the best of intentions may fail or even be counterproductive if people's cultural beliefs or structural barriers are not considered. Second, while there is clearly general knowledge and experiences that can contribute to understanding disability and poverty as a global phenomenon, contexts are different and require separate analyses and unique solutions. Third, a valuable challenge to established and largely Western-dominated thinking around disability and poverty is found in the distinction between individualised and political/structural explanations. Fourth, including disabled people and their representatives or advocates from the policy process is not only correct in a democratic and a justice perspective, it is also crucial for finding the right solutions. As for all social phenomena, among which this clearly is, studies need to be carried out in different contexts and cultures in order to develop contextspecific as well as more general knowledge.
Finally, several of the chapters in this book provide an insight into the lives of people with disabilities living in poverty, and the vulnerability implied by living in poverty.
While disabled people in poor contexts are and have been deprived of basic services, including individuals with disabilities and their representatives will in many instances be a challenge due to lack of education, experience and not least due to weak organisations. As shown in some of the chapters, individuals with disabilities have struggled and survive under very difficult conditions, bringing evidence to the fact that they also represent a tremendous resource that can be used to improve the situation for the poorest of the poor. After all, individuals with disabilities are experts on living with disabilities. Without this expertise, and without challenging and breaking up established power structures, the fight against poverty will be jeopardised.
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