Living with disability in rural Guatemala: exploring connections and impacts on poverty

Shaun Grech

Abstract

This qualitative study, carried out in rural Guatemala, seeks to gain understanding into the relationship between poverty and disability, and the dynamics operating within it, as perceived by disabled people living in poverty. Using in-depth unstructured interviews with 10 purposively selected participants, the study finds that the relationship between poverty and disability is complex, and that shifts in the relationship, occur through the intensification of exclusionary mechanisms confronting the poor at large, compounded by those specific to disabled people. In the absence of formal safety nets, disability impacted the livelihood assets of participants, and exclusive dependence on the family, meant that disability was a source of impoverishment for both disabled people and their families. The study concludes that cross-sectoral interventions addressing disability-specific and mainstream poverty requirements may help alleviate poverty for disabled people and their families, especially when these build on their strengths. Finally, more research could provide insights into other dimensions of disabled people's lives, notably the ways the dynamics between poverty and disability are conditioned by socio-economic and political contexts and cultures; how exclusionary mechanisms interact and reinforce each other; and how poverty and disability operate among different segments of the disabled population.

Introduction

Around 600 million people or 10% of the world's population are estimated to be disabled, and 70%- 80% of these are said to reside in the world's developing countries, largely concentrated in rural areas, and often residing in poverty. In recent years, increasing reference has been made in the disability and majority world debate, to the notion that disability and poverty are related and form a mutually reinforcing cycle (see for example Elwan, 1999; DFID, 2000; Yeo, 2001; Edmonds, 2005). As a consequence, disabled people are often said to be amongst those living in dire and often extreme poverty. This cycle, has often provided support among various organisations and the international disability movement, for the argument that disability, understood in this study as 'an interaction between human functioning and an environment which does not account for different levels of functioning' (Grut and Ingstad, 2006, p. 6), must be included in development.

Despite such efforts, disability remains excluded from development, at research, policy and programme levels, and the voices of disabled poor people in the so called developing countries remain largely unheard (Coleridge, 1993)- an epistemological limbo often subsumed under generalizing discourse and myths. This exclusion is further compounded by a disability studies that retains an almost exclusive focus on disabled people in Western industrialized settings, despite the fact that a majority of its constituents are located in the majority world. As Miles (2007, p. 3) observes, we need 'to admit that we... hardly even understand the nature and extent of the problems'. The relationship between poverty and disability also has not been systematically examined, and the evidence base remains anecdotal (Elwan, 1999; Metts, 2000). This dearth of research is compounded by the absence of disability indicators and dimensions in censuses and broader poverty assessments, household surveys, and other measures of well-being (e.g. human development indicators). Qualitative research engaging with the voices of disabled people living in poverty, remains notably shortcoming. As van Kampen et al. (2008, p. 20) note, 'several authors seem to accept the existence of this link, even without a sound research basis'.

In light of this, the purpose of this study was to gain understanding into the lived reality and poverty situation of disabled people in rural Guatemala. More specifically, it aims to explore disabled people's perceptions of and understanding of the disability-poverty relationship, with a view to uncovering and exploring the dynamics operating in this relationship, and how it shifts in the context of the Guatemalan socio-economic, cultural and political context.

Methodology

The study was conducted using qualitative methodologies, specifically oral testimonies, in an effort to tap into and reveal hidden spheres of experience (Slim and Thompson, 1993). Ten participants (6 men and 4 women) with physical and sensory impairments (ages ranged from 25 to 67), and residing in rural areas of the municipality of San Manuel Chaparron in the department of Jalapa (Southern Guatemala), were purposively selected from sampling frames provided by select organisations and community gatekeepers. Four participants were diagnosed with poliomyelitis; one was diagnosed with rheumatoid arthritis; three were missing limbs; and two participants suffered from undiagnosed visual impairments.

Participants were familiarised with the study through visits prior to interviews, allowing space to discuss and explain the scope and other aspects of the research, and answer any questions. Confidentiality and anonymity were ensured and informed consent was obtained from all participants. Emphasis was especially placed on the fact that participation was entirely voluntary, and that participants could withdraw at any time, without any justification; that they would choose the time and place allocated for the interview; and also that no information would be shared with third parties in any way that could reflect their identity at any stage of the research process.

A total of 17, 1-2 hour unstructured in-depth interviews were held in participants' homes, and audio-recorded. Interviews were subsequently transcribed verbatim and translated from Spanish to English and analysis of the findings was conducted using grounded theory (Glaser & Strauss, 1967) in an effort to reveal the common threads in the testimonies and highlight the words, reflections and views of the participants, and to build theory from the data. Alongside the emergent approach of grounded theory, the analysis also employed insights from development theory and concepts, notably the Sustainable Livelihoods Framework (DFID, 2000a). All names have been changed to protect the identity of participants, and replaced by pseudonyms.

Results

It was immediately established that an intricate relationship existed between poverty and disability. Participants clarified at the outset that deep-rooted commonalities existed between disability and poverty, both characterised by intense social, economic and political exclusion. Shifts in this relationship, operated through these exclusionary mechanisms, and compounded by specific barriers to disabled people following the onset of impairment:

Being poor and being disabled are similar... am disadvantaged like the rest of my family... but if you are disabled it gets much worse in these conditions... and you have other problems... medicine, wheelchair, and people do not know you... you get poorer... sometimes people beg to survive (Ismael)

All participants were born into poor families, and described poverty as including persistent difficulties in meeting basic needs, low income, inadequate access to formal support systems (including health and other benefits), and unsanitary and unsafe living and working conditions. Although a number of reasons were believed to be a cause of their disability (e.g. 'the will of God' and 'destiny'), participants highlighted how these deprivations, meant increased vulnerability to disease and impairment:

We always lived in poverty, our house is collapsing, we have no electricity, no water, no money. It is easy to fall ill when you are poor living in these conditions, because there is no one or nothing here to help you prevent it (Roberto)

Using the Sustainable Livelihoods Approach (see Figure 1), it was clear that impairment, formed part of the vulnerability context, a shock that impacted all livelihood assets (physical capital, human capital, financial capital, natural capital and social capital)- deprivations that interacted, were often mutually reinforcing and influenced livelihood strategies. The outcome was increased dependence on their families, vulnerability and insecurity, and the shift into deeper and chronic poverty for participants and their families. These impacts are explored in the following sections.

Figure 1: The Sustainable Livelihoods Framework (DFID, 2000a)

Human Capital

Human capital (that is the skills and knowledge, ability to labour and good health) is both a means of accessing other types of assets, as well as an end in itself. Stocks of human capital for participants were impacted through barriers to education and health care facilities. While participants highlighted that exclusion or limited access to education was a common reality for poor people in general, disability intensified these barriers, and created new ones. As a result, they stood less chance of starting schooling or achieved lower school attainment when compared to their non-disabled peers. Most commonly, barriers to education included:

  • Long periods of hospitalisation (in the case of polio)
  • Negative reactions from other school children
  • Overcrowded schools
  • Absence of trained teachers and adapted teaching materials (e.g. Braille) and teachers on low salaries.
  • Architectural barriers (inadequate roads and school facilities): virtually no schools in the area were accessible for children with disabilities
  • Overprotection by parents

The absence of an education for participants meant diminished opportunities to socialise, gain access to information, and build employment contacts, barriers which did much to normalise their exclusion from the public sphere and accentuate their poverty:

Education is important to see and be with people, to help you maybe in work, to learn things... but sick people like me do not go to school... this is the way people think around here... nobody helps you to get into school... and then you have even less than others (Ismael)

Negative impacts on human capital, were particularly manifest through the barriers to health care encountered by participants, which often meant ill-health, restricted mobility, and again limited social and economic participation. Health, it was noted, had particularly strong impacts on other livelihood assets:

I had an accident, and hit my amputated leg whilst working, and it got infected. I had nowhere to go to for help, and no money to treat myself in the city. I lost a month of work ... if I am ill all the time with some thing or another, I can not go out, and I can not work and I need money for medicine (Oscar)

Barriers to basic and specialized health care and rehabilitation documented by participants included:

  • Remoteness: this often meant high transportation costs of reaching the health centre in the municipality, and unavailable or costly health and service related information
  • Opportunity costs: this included the lost labour and income of the person seeking health care as well as that of the caregiver accompanying him/her
  • Prohibitive costs of specialist health care, generally located in Jalapa and more often in the capital city: The costs highlighted above together with doctor's fees and the costs of prescription medications, meant that treatment was often sought too late, conditions were left undiagnosed, and following the onset of an impairment, pain and limited functionality became a daily reality:
    When one has money and possibilities he can get treatment in the city. My eyesight has been degenerating for 21 years and my father has never taken me to a doctor, because we do not have the money, and first of all we have to eat. Till this day I still do not know what my condition is and my eyesight keeps getting worse. I am nearly completely blind now (Blanca)
  • Mistrust in doctors: the high fees charged by specialised doctors and unaffordable medication prescribed, resulted in alienation from medical services in general, and people often resorted to self-medication (discussed below)
  • Cultural beliefs: participants highlighted that people in general allocated only a small part of their budget to health care and were more likely to look for more financially viable 'substitutes' such as sobadores (those who heal through massage and bodywork) and curanderos (healers) before approaching a formal health facility. Formal health services were generally sought only as a last resort
  • Lack of interaction between the poor and non-poor: participants frequently expressed feelings such as 'shame' related to their poverty situation, when approaching the non-poor such as doctors to seek help
  • Inexistent or limited rehabilitation services: while limited rehabilitation services (speech therapy and physiotherapy) by national telethon-funded NGO Fundabiem are available once every fortnight in the municipality, attendance is low, and the Q10 donation together with the transportation costs required to reach the parish hall, constituted a major barrier especially to those furthest away from the municipal centre
  • No specialist drugs available in the area
  • Inadequate roads, lack of assistive devices and poor transportation hindered mobility

Financial Capital

The onset of disability, negatively affected the stocks and flows of financial resources for participants and their families, reflected in the employment patterns and the additional costs (direct and indirect) incurred. Employment patterns were fragmented for participants, operating through what Livermore et al. (2000) describe as changes in supply and demand factors for disabled people's labour. These often translated into outright exclusion from livelihood activities, less pay, or only temporary participation. The demand-based obstacles outlined by participants included:

  • General unemployment: this affected the lives of poor people indiscriminately, but participants indicated that they had significantly less chance of finding or retaining employment than non-disabled people
  • Inaccessible work places: the limited work places available (generally agriculture) and the tasks involved, were sometimes physically unable to accommodate disabled people (especially those requiring hard manual labour)
  • Attitudes towards disability: disability was often met by attitudes of indifference and/or perceptions that disabled people were 'sick' and/or 'useless' by potential employers, despite their resilience and perseverance to perform in the best possible way. These perceptions were sustained by the frequent invisibility of disabled people from the public sphere, and a dominant view that they were simply passive recipients of occasional acts of 'benevolence', rather than productive workers:

    I try and work the land like all the others, and it is not easy with one leg... but I do my best... work is little, and it is only when someone has some compassion that I am given work. I do not want to beg, I have never done so (Oscar)

Participants also encountered 'supply-side' barriers to their participation, including:

  • Infrastructure: (especially roads and transportation) together with the unavailability of assistive devices, this meant limited mobility and the inability to reach workplaces
  • Impairment-related problems: chronic pain (especially for those with severe impairments) and ill-health, largely due to the absence or unaffordability of rehabilitation and health care, meant that they were often unable to be economically active or that their participation was marginal
  • Self-employment barriers: While participants emphasized the importance of and dependence on self-employment, the absence of a wage, persistent strains on their savings, and the unavailability of credit (from both formal and informal sources), implied that often no investment capital was available to start up their own business. And when they managed to set up a small enterprise (e.g. a kiosk), businesses were often not sustainable on account of low demand for their products and/or services, and low streams of operating capital among others. This was highlighted by Erasmo, a 33 year old man, suffering from rheumatoid arthritis. After losing his strenuous job in a shoe factory in Guatemala city, he returned to his village where he learnt to cut hair from an acquaintance, and then setting up a small salon in his mother's house. Left with some mobility in his hands, Erasmo fears that even this job, may not keep him going for long, and that he will not recoup his investment and opportunity costs:

    I started to cut hair and people tell me I am good at it... it was perfect... I do not have to walk long distances... But there is little work here... people in general are poor... maybe because I am not close to the park (the municipal centre)... or because people do not trust me... I want to work ... every day I think as my condition gets worse, that I will not be able to cut hair for much longer, and I have not made any money yet from the trade to be able to help my family (Erasmo)

Apart from the impacts on employment, disability brought about substantial direct and indirect costs. The direct costs faced by participants were many, including medication and specialized equipment (wheelchairs, crutches, prostheses, leg braces). Self-medication, appeared to be customary in the community, where unregulated over the counter purchases prevailed- notably because of the absence or lack of medical care, and the cultural acceptance of this practice. Medication was often recommended by unqualified persons working in local pharmacies, and by neighbours and friends, a custom that might come at a higher cost, and potentially posing serious risks for health:

Yes, I spend so much money because I am my own doctor... this time I spent more than Q300, first one box of Q50, then one of Q100 and like this... small medicines and expensive...(Johanna)

Indirect costs were also substantial, and these typically included the lost income of the disabled member, the opportunity costs of lost labour by those caring for the disabled member, and other impacts on the family. In the absence of formal support or welfare, family members were forced to work more to compensate for the lost income of participants or to cope with their direct costs (especially those of medication), while the burden of caregiving was disproportionately shouldered by mothers and female siblings, increasing their overall workload and depriving them of socialising, employment and educational opportunities. The onset of a disability, it appeared, also drew resources away from potential household maintenance and improvement, and reduced consumption (including nutritious food), contributing to potential illness. This was the case of Oscar, a disabled man residing with and caring for his two bed-ridden sisters. At the time of the interview, food was scarce, rent could not be afforded, the house was in dire need of repair, and the family were being threatened with eviction. Survival hinged on handouts from neighbours:

The electricity bills were more than Q77 each month, but to buy medicine... and to pay for water, yes water we are paying Q20 every month... but to pay electricity... they took it off... so candle we are using now. By the end of every month we are also short of food and we have to go asking people to give us some... .only tortilla we have been eating... (Oscar)

Physical Capital

Physical capital refers to basic infrastructure (the physical environment) and producer goods (tools and equipment that enable people to function more effectively). For participants, low stocks of physical capital meant inadequate roads (dirt tracks and steep paths) and transportation, and the absence or lack of assistive devices, all of which hampered the most basic of mobility, and conditioned access to social and economic opportunities. For most of the participants, it translated into a forced imprisonment in their homes:

I would like to go out... this is what affects me most... at times I ask myself: 'why don't I have the right to go out just like others?' I am locked up in my home every day, isolated from everyone because I can not walk on these roads (Juanita)

Although assistive devices were prioritised by participants, these were often too costly, and only made available after extensive pleas for charitable financial help, or were handed down from other users, often in unusable conditions:

Seven years ago, I got my prosthesis that cost Q2000. I had to beg for money at the catholic and evangelical churches, and I sent letters to some acquaintances in the US... and that's how I bought it. Now I need to replace it... because only with it and my crutches can I walk... at least to be able to go out and earn something... so again I have to see how to get the money (Alfonso)

Even when participants had acquired mobility devices such as wheelchairs, these were not adapted to the local environment, and maintenance and repair costs were prohibitive. Participants sometimes opted for dragging themselves out at times on all fours to be able to move around. This was the situation for Geovanni, a 45-year-old man with polio, a condition that left his legs contorted, and a dead weight. He makes his way to work (begging) pulling his weight with his arms to get a ride on the bus to Jalapa:

I do have a wheelchair but I can not use it with these roads... here the roads are untracked, just dirt and dust. I can not even get out of my own house, the roads are so bad. Instead, I have to drag myself out with my arms and crawl... I go on with dust in my eyes day after day. I get on buses, at least like this I can move and get to work, and earn my living (Geovanni)

Social Capital

Social capital has been defined as the 'the norms and social relations embedded in the social structures of society that enable people to co-ordinate action and to achieve desired goals' (Narayan, 1999, p. 6). Participants highlighted that while poor people possessed horizontal social capital, and while these traditional social networks composed of other poor people, offered much in coping with the hardships of poverty, the onset of disability eroded social relationships through prejudice and discrimination, and/or impacts on other life spheres documented above (education, employment and health). Lack of participation in employment, was viewed by participants as especially important, since apart from depriving them of an income, it reinforced negative social perceptions of disabled people, in a society where the ability to labour was a critical component of full personhood:

Before my disability, I worked the land, I was a good worker, people respected me... I had a normal life. When I had my accident, everything changed... I stopped working and had to stay in the house... and to everyone, I became a sick person who had to stay in bed. I became useless (Roberto)

Participants documented how relationships were conditioned by the consensual view in their communities that disabled people were objects of pity, medical 'cases' and/or recipients of charity able hand-outs, perceptions also reflected in and reinforced by local words (for example the term enfermo (sick/ill), typically used in the area to refer to disabled people:

They call us 'sick' because that's what we are to them... sick people who do not work and depend on others... (Johanna)

Natural Capital

Natural Capital constituted land, livestock and other natural resources fundamental in the area since livelihoods are largely dependent on agriculture and other resource-based activities. While stocks of natural capital, especially land were scarce for all participants, the two participants whose families owned small parcels of land, claimed that it offered them the opportunity of continuing to work (albeit at subsistence level), through the varied tasks required in agriculture. Land and livestock, also offered participants some protection in partially satisfying food consumption needs, and consequently reduced the costs of purchasing the basic food basket. In spite of this, disability impacted natural capital for participants. Land was often left fallow following the onset of an impairment (especially when the affected member was the household head and where other family members could not compensate for the lost labour), and often, it had to be sold in order to pay for medical and other costs:

When I got ill, I stopped working the land, and my father was old... and my brothers do not live in the area... the land was not being worked and I lost the crop... after that I was forced to sell the few cows I owned, and then the small piece of land because I had other costs to take care of... I have nothing left now... (Francisco)

Transforming structures and Processes: policies, rights, institutions and organisations

While families and poor communities ensured survival for participants, the 'gate keepers' to much needed resources, and who could contribute to mitigating shocks and leveraging external assistance (hence influencing the vulnerability context), were the municipal authorities and the local elites interacting with them, what appeared to be politics of favours. But almost invariably, disability was met by political indifference at local levels, manifested in the lack of general social programmes, and the complete absence of disability-specific ones:

We are just poor people. They (municipal authorities) are even less interested in the sick... they drive their nice cars, steal from government funds... they give us nothing and they are not a good example (Juanita)

While Guatemala enacted disability legislation in 1996, and is today also a signatory to the UN Convention on the Rights of Persons with Disabilities, it appeared that these were yet to have any tangible impacts on the lives of participants. Participants had no knowledge of the existence of rights or national policies, a situation aggravated by the fact that no organisations of or for disabled people) operated in the area. This implied that services, information dissemination and advocacy were seriously compromised. Shortcomings in these transforming structures, compounded and sustained the limited access to assets and perpetuated the absence of political influence or representation by disabled people:

What are rights? The government, the municipality or no one has ever given us anything... you are forgotten here... (Roberto)

Heterogeneity

What clearly emerged from the study was that participants were not a homogeneous group, and experienced both disability and poverty differently, depending on certain variables, notably the type of impairment and gender. Participants with impairments that were more severe, affected mobility, and/or were more visible, were disproportionately disadvantaged in terms of employment, social relationships, and the costs incurred. Gender, within the dominant culture of machismo, also implied that female participants were impacted and disadvantaged in most spheres of personal and social development. Inclusion in the labour market for example, was made more precarious due to fewer employment opportunities for women in general, the cultural expectation that women would be taken care of by their husbands, and the expected roles of women as wives and homemakers. Disabled women were perceived as unable to prepare food, take care of the household and the children, and were hence devalued as marriage partners. This process strengthened their exclusive dependence on their families for survival, which in some cases, also meant they were trapped in abusive relationships:

It is much harder as a disabled woman because there is nobody to take care of you... a disabled man, he may eventually find a job but for a women... difficult... I have to depend only on my two brothers... they are all I have... but they spend no time with me, always outside, they leave me alone at home... and I have to cook for them and serve them day in day out... they do not respect me... .they see me as a burden, but I have only them (Rosa Maria)

Discussion

The findings of this study support other literature (Thomas, 2005) in highlighting that both poverty and disability, are manifestations of similar processes of exclusion. Similar to other studies (Filmer, 2005) the findings therefore suggest that the relationship between poverty and disability, is best understood as an association rather than a matter of cause and consequence. The onset of impairment, intensified the barriers common to all poor people, and created new and often insurmountable obstacles. This meant that disability impacted all types of livelihood assets, reduced the choice of livelihood strategies for participants, and hence was a source of impoverishment. Similar to other studies (PAHO/SIDA, 2004), exclusion in health was one of the most important mechanisms through which these mechanisms operated and perpetuated poverty, reinforcing the fact that adequate, affordable and accessible health care, remains a pivotal concern amongst poor people.

Supporting previous studies (Coleridge, 1993; DFID, 2000; Ingstad, 2001; McConkey, 2007), the findings also highlight how in the absence of formal safety nets, disability remains exclusively a family responsibility, upon which survival almost invariably depends. The consequence was that disability impacted household assets, and hence intensified poverty for both participants and their families. This supports the notion by Ingstad (1997) that a family with a disabled member may be considered a 'disabled family', with the implication that at an analytical level, the situation may best be viewed from a family position.

Participants noted how political powerlessness, motivated by an indifferent municipal authority, legitimized and intensified their exclusion, supporting the argument by Oliver and Barnes (1998) that much of the exclusion is supported by institutional practices. Discrimination, particularly impacts those social networks and related assistance, which could buffer against the effects of poverty (Narayan et al. 2000). Rights, policies and disability advocacy, appeared to be invisible and unknown themes to participants, maintained by the fact that programmes, organisations, or initiatives were not only absent, but failed to translate into any material or other benefits. This finding supports critiques by those such as Ingstad (2007), who claim that in the overriding presence of poverty and deprivation, rights more often than not run the risk of being utopian. More specifically, as Chambers (2004, p. 24) contends, 'those who need to claim them most are those who enjoy them least'.

Conclusion

In conclusion, the study finds that disability impacts and shifts poverty in multidimensional ways, and as a consequence, disabled people and their families are among the poorest in their communities. In light of this, multiple and cross-sectoral interventions, both disability-specific as well as mainstream poverty-reduction programmes (for example income maintenance programmes), may offer much needed support to build assets and reduce vulnerability. These will be most effective when building on the strengths and resilience of poor people, who despite high levels of deprivation, continue to ensure the survival of their weakest members. Spaces remain open for much needed research looking into (among others): the ways different contexts and cultures influence the dynamics between poverty and disability; how exclusionary mechanisms interact and reinforce each other and how these operate in different ways amongst different segments of the disabled population (e.g. women, children and those with HIV/AIDS); and how disability impacts other household members.

Currency Equivalent

USD1 = Quetzal 7.55

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Contributors:

Shaun Grech, MSc (PhD Candidate)

Faculty of Health, Psychology and Social Care, Manchester Metropolitan University, UK

Email: shaungrech@gmail.com

Tel: 972-(0)8-6472336, Fax: 972 (0)8-6472933

Manchester Metropolitan University, Elizabeth Gaskell Campus, Shepherd House, Hathersage Road, Manchester M13OJA, UK

 

International Journal of Disability, Community & Rehabilitation
Volume 7, No. 2
www.ijdcr.ca
ISSN 1703-3381