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Drawing from long term ethnographic work and practice in Guatemala, this incisive and interdisciplinary text brings in perspectives from critical disability studies, postcolonial theory and critical development to explore the various interactions and dynamics between disability and extreme poverty in rural areas.



1. Disability, Poverty and Development: Mapping the Terrain

Numbers remain a powerful force in a world compelled to simplify and contain life’s nuances and complexities. They are work, money and power for those producing them, but they can also be strong political tools for action. The urge to enumerate has not spared disability in the attempt to make it epistemologically, discursively and practically manageable. The much-anticipated World Report on Disability, published by the World Bank and WHO in 2011, estimates that some 15 per cent of the world’s population, or rather some 1 billion people, are disabled people. Following the lead from earlier WHO figures, the report states that around 80 per cent of these are located in the so-called global South. Many are said to be women, the bulk living in rural areas, often in conditions of intense poverty.

Shaun Grech

2. Guatemala: Landscapes

This chapter seeks to position disability within the specific Guatemalan context, while framing this context in historical terms. Guatemala is a very complex and hetero\geneous country that can hardly be captured in a few pages, as in this chapter. What I do provide here is a very partial and selective picture, but one which I hope still serves to position, even if conditionally, and provide a background for the disability and poverty relationship explored in the chapters that follow. It then moves on to map out the disability policy and service scenario in the country. Again, this picture is most likely fragmented, not least because there are dramatic research and information gaps.

Shaun Grech

3. Disability in the Spaces of Poverty: Critical Theoretical Introductions

This chapter maps out disabled people’s own conceptualisations of disability and key elements of the disability experience, providing a theoretical and contextual backdrop for the disability and poverty relationship explored in the following chapters. It highlights how disability experiences are not only complex and multiple but are also embedded in broader notions of personhood. This in turn requires engagement with aspects of the very particular spaces and places in which participants and their families live and articulate their lives, what I term the spaces of poverty, ‘spaces that are as material as they are discursive and ontological’ (Grech, 2014a).

Shaun Grech

4. Disability and Poverty: Connections and Transitions

This chapter, together with the following two, addresses the relationship between poverty and disability, the core part of this monograph. The first section reframes this relationship, offering some theoretical repositionings. It then moves on to address the impacts of disability on poverty. The rest of this chapter, together with Chapter 5, is devoted to exploring the factors and processes impacting and shifting this poverty for disabled people based on evidence from this study. Chapter 6 follows up closely, addressing the family-level dynamics and impacts.

Shaun Grech

5. Disability and Poverty: Connections and Transitions Part 2

Disability, as illustrated in the previous chapter, appears to fragment or interrupt work, but the effects of reductions or loss of money inflows reach dramatic proportions when confronted with increased financial costs induced by the impairment, what I will be referring to as direct costs. Disability sometimes means differential needs for disability-specific or adapted items and services as well as greater consistent quantities of those utilised by everyone (e.g., transport). These come at a high cost, rising incrementally, as it seems, with the severity of impairment, geographical distance and a host of other factors. Direct costs are many, but the most impoverishing, as those interviewed stressed, are often health care and medication, followed by travel costs, and for those who seek them, specialised equipment and assistive devices. These are mapped out below. The combination of these costs is the ultimate blow to economically fragile households, especially when they are met by lost or fragmented labour power and hence few or no earnings. In turn, they persistently intensify the need to work as the key priority, permanently fixed. These costs impoverish families in multiple and interacting ways, imposing on assets, consumption, production and psychological well-being as they are trapped even deeper in cycles of deprivation, inequality and insecurity.

Shaun Grech

6. The Disabled Family: From Survival Struggles to Collective Impoverishment

This chapter looks at the impacts of disability on poverty beyond the individual. Referring back to Figure 4, poor families react in the face of the individual impacts and dynamics mapped out in the previous two chapters, desperate attempts at ensuring their own survival and that of the disabled family member in a context where poverty is lived as a collective. Unfortunately, these panicked reactions by fragile and unprepared families mean they are pushed to shift their own production and consumption patterns, strengthening a deep, dynamic, complex and multidimensional impoverishment, contributing to what is best framed as the disabled family. This is a family entrapped in a chronic, most likely intergenerational poverty, a poverty experienced the harshest by those in the least resilient positions. Critically, family impoverishment sets in motion a number of interactions with the poverty of the disabled person him or herself, initiating other spirals of deprivation across the dimensions explored in the previous two chapters. While impacts and reactions are also experienced by household members (not necessarily blood related), the evidence suggests that it is largely families, especially immediate family, those tied by blood, who live disability on their own skin. This is why I will not be talking about ‘disabled households’.

Shaun Grech

7. The Politics of Indifference and the Poverty of Policy

This chapter positions the disability experience within the institutional1 scenario. It does not seek to provide a comprehensive picture of this landscape in Guatemala but simply an institutional outline emerging from disabled people’s accounts, and which serves to, at least partially, frame, compensate and contextualise the analysis and narratives presented in the previous chapters. This is critical in positioning and understanding how disability and poverty are constructed and impacted (if at all) institutionally and discursively in rural Guatemala, and how they are experienced and lived and how they interact and even transition over space and time. It is surprising how much work on disability and development continues to ignore politics and political processes when these determine if and how policy discourse is constructed and understood (or not) and if and how policies, including the Convention on the Rights of Persons with Disabilities (CRPD), are known, interpreted, implemented and enforced, if at all. Carothers and de Gramont (2013), for example, emphasise how the gross ambitions of development aid (including peace) are too often shot down by the lack of planning and accounting for macro and micro political issues and the barriers and possibilities they impose. Disability and poverty are not only social and embodied, they are political, politicised and politicising.

Shaun Grech

8. Final Reflections

This book has sought to explore the various connections between disability and poverty in this one context. Perhaps it raises many more questions than it answers, but I hope these provide opportunities for further interrogation and indeed research and practice that can make a difference to the lives of disabled poor people on their own terms. Over the next sections, I reflect backwards on the narratives to discuss the issue of rights in practice as they meet contexts of extreme rural poverty. Following this, I conclude this book by briefly reflecting outwards on the broader disability/global South debate.

Shaun Grech


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