Poverty, Disability, and Development Aid in Economically Weaker Countries: trends, critique, and lessons usually not learnt (a bibliography, with introduction and some annotation)
By M. Miles (email@example.com)
NGO Manager: "Just tell me what it means in practice, on one sheet of paper. I need to make decisions, commit funds, tell people what they will be doing..."
Provincial Director, Health & Welfare: "Don't tell me about it, unless it will clearly be workable by the same under-paid and poorly motivated staff that I have, with measurably better results and lower cost than what they do now. And without annoying the religious leaders."
National Politician: "We need a policy now, today, in words that should inspire most of our people to make a good effort in broadly the right direction. If you also want to make it evidence-based, that's okay."
Researchers:"These are highly complex issues. So far, the results suggest that the methodology needs a stronger focus in several areas. More research is needed before we can see any clear pattern."
The present users... are assumed to be starting with significant experience in some of the relevant and overlapping fields; so this "Cautionary Introduction" will make no elementary tour of the fields. It merely sketches the complexity, and underlines the need to scrutinise and think sceptically about the sources and evidence used in the documents listed below.
The compiler's excuses... This is a work in progress (round a Mobius strip?) It reviews evidence from the usual suspects, but also from some less obvious sources, to thicken up the plot and strengthen our disbelief in simple, universal solutions to complex global problems. The compiler has no personal benefit, nor any financial or career involvement, from any policies or directions that may come out looking good in what follows; nor any pleasure in criticising the ones that look good but smell bad. The exercise was worthwhile because some reports, papers and books were found that seem to have a strong evidence base, a respect for complexity, and an intelligent look at some possible directions forward.
Disability, Poverty, Complexity
In the past 20-30 years, demands increased for aid and development policies and strategies that have been field-tested and shown to be affordable, sustainable, and flexible enough to work fairly well in widely differing conditions and cultures. Some aid slogans have become more sharply focused, e.g. in the World Bank's "World Development Reports", moving from "Attacking Poverty" in 2000, to the more thoughtful "Making Services Work For Poor People" in 2004. Disabled people have shown up more clearly on the development map, raising unsolved issues of definition, enumeration, self-representation, goals and strategies. When broad and contested terms like 'poverty' and 'disability' meet, simplistic slogans soon arise (e.g. "Disabled People are the Poorest of the Poor") to remove the need for careful thinking. Most people will agree that poverty and disability are often linked; yet most poor people do not think of themselves as disabled, and many disabled people are not poor. Careful thinking and research are still needed. It may be more pertinent to suggest that 'the adverse consequences of disability fall more heavily on the poorer sections of the community.'
Recent bibliographical surveys suggest that thousands of studies and papers have been produced on disability in the 'non-western' world; but very little research using credible methodologies, focusing specifically on disability and poverty in developing and transitional countries, with publication in academic journals after independent peer review. Such a level of evaluation and accreditation, i.e. anonymous manuscripts submitted to critical review by independent academics who are qualified and experienced in the specific field and have no financial or career interest in the outcomes; and then returned with comments to authors for revision before publication, is the 'gold standard' for academic knowledge-production, and aims to filter out reports based merely on authors' personal views, experiences and prejudices.
Yet even with academic peer review, flawed material still goes through unchallenged. For example, a paper (Masset & White, 2004) is listed below by a researcher and a fellow at a prestigious institute, with a title that appears directly relevant to the present bibliography, based on data from India, Bulgaria, Ghana, Nicaragua, and Vietnam (though the data are admitted to be non-comparable, being based on different definitions). The authors state (p. 287) that
"It would be expected that a much larger share of disabled people would be found among the poor than among the non-poor. This expectation was met in four of the five cases with Nicaragua as the exception, where there are slightly more disabled among the non-poor. This apparent slight anomaly may be the result of relatively favourable treatment of injured veterans from years of civil conflict." [italics added]
In their adjacent tabulated data (actually showing only four countries, omitting Vietnam), the percentages of "Disabled people as a share of the poor" are 7.7, 14.2, 12.4, and 9.8; while those of "Disabled people as a share of the whole population" are 6.5, 11.8, 10.6, and 11.8. The numerate reader can easily see that the differences for the first three countries are 1.2%, 2.4%, and 1.8%. These modest differences seem to be offered as evidence that the "expectation was met", i.e. in these countries "a much larger share" of DPs were among the poor than the non-poor. Yet the reverse difference in Nicaragua, of -2.0% is not described as "a much larger share of DPs among the non-poor than among the poor", but as "slightly more disabled among the non-poor", and as a "slight anomaly" that can quickly be explained away. Masset & White do next admit that "the difference in the percentage of poor and non-poor people having disabilities is not particularly large in any of the cases." Yet they have already shown their willingness to swing the argument against the actual (but partial, and admittedly non-comparable) data they present, in favour of their expectation that there "must be" many more disabled people among the poor than among the non-poor.
Masset and White's expectation might perhaps be reasonable. More rigorous research might give much stronger support for it. The point is that these well-qualified researchers allowed their beliefs to sway them into submitting a patently biased argument for publication; and then the flaws sailed past the scrutiny of university-based peer reviewers and editors, to be fixed in print. (The same paper also includes, without comment, some other highly questionable data). While the independent and anonymised peer review system (in which the present compiler has taken part as an author and as a reviewer for 20 years) does succeed in filtering out much nonsense from academic journals, unfortunately some still gets through. (Did the reader actually check those few little calculations in the previous paragraph, or did they 'sail past'?)
Development activists might be impatient with this kind of data and argument: 'Of course some third world DPs are middle class and educated; but we simply know that the majority are poor, and maybe a third of them are in desperate poverty. Those are the millions we are concerned with.' This 'guessed' knowledge might be well founded. Yet it is worth noting that in most identity parties or interest groups, national leadership does not arise randomly; it is likely to come into the hands of those with greater education and financial means, and urban location. Among that minority, the views of those fluent in a major European language are more likely to be heard by western development agencies. Such inputs certainly have some value; but they are seldom based on careful research among the population supposedly represented. Westerners easily end up 'knowing' many things which in truth are merely the beliefs of their third world urban counterparts. The latter have little motivation to admit to being confused and uncertain about disability and development in their own country. (Such an admission by the experienced researchers Pande & Dalal, 2004, after years of engagement and personal experience with disability in India, is remarkable not only for its honesty; it also casts doubt on the confident assertions made by foreigners who have spent merely a year or two in India, or any other large country).
Most of the 70 items listed below actually make no claim to have been evaluated by independent scrutineers with qualifications in the specified field. Some of them have the supposed authority of international organisations, e.g. the World Bank, ILO, WHO etc. Again, the reader is well advised to be cautious. For example, the extensive literature review on "Poverty and Disability" by the economist Ann Elwan (1999), available on the web, is often cited in subsequent literature as though it were an authoritative World Bank publication. At the start of that document, a disclaimer states precisely that it is not a formal publication of the World Bank; it is a "discussion paper" offering "preliminary and unpolished results", and of "provisional character". The paper is worth looking at, because Elwan did some useful analysis of different categories and problems in the North American and West European data that makes up most of her evidence; she also traced some paths "from disability to poverty", and "from poverty to disability", in various countries. Elwan wrote very little about developing countries, because she did not find data accessible, and believed that "information about disability in developing countries is very limited" (p. iii). That suggestion is only partly true. Such information may not be readily accessible in the US; but there exists a great deal of published and unpublished information and evidence about disability and disabled people in developing countries through the past 200 years, including census data and considerations of poverty (see e.g. items at: http://cirrie.buffalo.edu/bibliography/) All such information certainly needs careful scrutiny, yet it does exist; and much of it was compiled by people who were not aiming to support one disability policy or another (unlike some western research, see Tvedt, below).
To tackle the present field adequately would require significant training and experience in the disability field, in economics and governance, in international aid and development, in research methodology, and in the daily living situations of urban and rural people in developing and transitional countries in two or more continents. Hardly any of the work listed below, or reviewed for this bibliography, shows evidence of this combination of qualification and experience. At best, people with some expertise in two or three fields have tried to make some intelligent guesses in the other fields, and have pooled their resources to cover more ground. Readers are again recommended to maintain a healthy scepticism.
Other kinds of evidence represented below range through an assisted autobiography (from Pakistan), a novel (Nigeria), literary criticism (Korea), an ethnographic ramble through ageing (India), an historical ethnography of people with leprosy (Mali), and other varied literature. No apology is made for this range. A great deal more needs to be learnt, from a wider range of sources and cultural experiences, before well-informed and efficacious planning is likely to emerge.
Flaws and Ceilings
The compiler/annotator, having spent half his working life in Third World disability service development, and half in critical studies, research and writing, is hardly immune to the flaws and weaknesses noted. This short bibliography was compiled in haste in July 2005 (when it was supplemented by an historical section of similar length), and has been revised in November 2005. It is far from satisfactory, whether in the selection or the annotation. There is very likely some much stronger work out there in libraries or websites, awaiting discovery; the upper limit of the present bibliography should not be mistaken for the ceiling. Some sites, e.g. the World Bank, ILO, DFID, Chronic Poverty, AIFO, and some Nordic aid sites, have a substantial amount of other pertinent material on various aspects of the field. The geographical imbalance of references, and almost complete confinement to work in English, is regretted.
Most of the URLs were verified during November (with many changes since July 05, not all coherent within some sites). Some items need some site navigation, or may respond better to googling. Apologies are offered for all flaws and omissions. Any corrections, views or information sent to the compiler will be read with interest.
Among many items consulted in recent weeks, one that unexpectedly looked good was the World Bank World Development Report 2004, "Making Services Work For Poor People" (see annotation below). This is a published book, also downloadable from the site, www.econ.worldbank.org/wdr/ [and scroll down]. It has almost nothing specifically about disability, which is subsumed under 'health' and 'poverty'; but on poverty, aid, economics, governance, the realities of trying to bring about change in countries at different socio-economic stages, and the strengths and weaknesses of aid processes, it was among the most interesting works seen. An indication of new attitudes at the World Bank is that the site offers not only the completed report, but also many draft-stage consultation documents, critiques from aid organisations, and discussion archives. The World Bank no longer believes that there is one 'best way' for all the world -- not even for the neglected and unheard poor of the world. It is offering documents with a range of views, for a range of situations, while admitting that to change the condition of the structurally poor is remarkably difficult.
This bibliography is dedicated with respect and affection to the memory of Mrs Farhat Rehman, physiotherapist and CBR activist based at Peshawar and CBR network coordinator nationwide, born September 1959, died May 2005. She was the outstanding CBR and health development worker of her generation in Pakistan, receiving a national award in 2004 (see: www.disabilityworld.org/04-05_04/news/rehman.shtml). Farhat Rehman's skills, experience and forthright contribution had begun to be appreciated in the international disability field. She also represented a fresh generation of educated Muslim women who engage fully in the life of their country, negating stereotypes commonly held by westerners. Her untimely death has taken away a dedicated and inspiring co-worker.
Items are listed in simple alphabetical order of first author's name, with the exception of one Arabic name where the honorific "Al-" is shown but not used in the alphabetical order.
ABU-HABIB, Lina (1997) Working with disabled women: reviewing our approach. In: Gender and Disability. Women's experiences in the Middle East, 9-25. Oxford: Oxfam.
Based on a research survey, the author reviews the disability-related work of the British charity Oxfam in the Middle East. Several assumptions underlying Oxfam's policies seem to have worked to the disadvantage of disabled women. In the author's view, stereotyping of disabled people according to the prevailing aid fashion, as a homogenous block of vulnerable, marginalised, impoverished and oppressed people requiring self-empowerment and liberation through combined action in solidarity, caused Oxfam to fail to challenge the serious cultural and economic imbalance of power between disabled men and women. Oxfam thus merely entrenched women's disadvantages, as it funded the development process.
ALAM, Khandakar Jahurul, BARI, Nazmul, & KHAN, Masudul Abedin (endorsed by National Forum of Organisations Working with the Disabled) (2005) Community Based Rehabilitation Practices and alleviation of poverty of people with disabilities in Bangladesh. Workshop on Community-Based Rehabilitation (CBR) and Poverty Alleviation of Persons with Disabilities, UNESCAP, Bangkok July 2005. At:
www.worldenable.net/cbr2005/paperbangladesh.htm [Nov. 05]
Sketch of some perceived needs, and the inadequate current programmes, in Bangladesh.
ALBRECHT, Gary L & BURY, Michael (2001) The political economy of the disability marketplace. In: GL Albrecht, KD Seelman & M Bury (eds) Handbook of Disability Studies, pp. 585-609. Thousand Oaks, Ca: Sage.
Well-referenced global overview of trends and issues in the politics and economics of government and commercial investment in, and individual entitlement to, a range of disability services, mostly in medical rehabilitation and care. Focused largely on North America and Western Europe, using anglophone sources; yet the authors note significant differences in the situation in developing countries, where disability-related needs are colossal but are not 'big business' because formal resources are not allocated to meet such needs (pp. 603-604). They also note that some European countries fear having their social welfare provisions taken over by profit-maximizing American companies (588-89, 597). The authors caution against "rushing to impose dominant models and popular solutions on social and cultural contexts where they may not fit well" (604).
BRINKMANN G (2004) Unpaid CBR work force: between incentives and exploitation. Asia Pacific Disability Rehab. J. 15 (1) 90-94. At:
www.aifo.it/english/resources/online/apdrj/journal.htm [Nov. 05]
Examines and discusses various kinds of non-financial incentives that have been offered in different schemes for community based rehabilitation, and the possible motivating or demotivating factors to which the CBR volunteers or unpaid work force are subject. In most situations of economic poverty, very few people can afford to spend much time engaging in voluntary work. They may do so temporarily in the hope of a paid job later, or to build up contacts and useful experience with the same end in view; but schemes that rely on voluntary participation are liable to a rapid turnover of personnel. Some similar arguments apply to family members who are expected to engage in teaching or assisting the disabled person in the CBR scheme.
BROWN, Scott Campbell  Programme monitoring and evaluation: the disability perspective in the context of development. Prepared for (but not formally endorsed by) the UN Dept. Economic & Social Affairs, Division for Social Policy and Development. At: www.un.org/esa/socdev/enable/monitor [Nov. 05]
In Section IV, Development of "Global Disability Indicators", the author discusses the problem of countries changing their definition of disability, from one national census to the next, giving Tunisia and Zambia as examples. (In a list of impairments counted, Zambia included "Sick" in 1969 and 1980, but omitted it in 1990, making important differences in any comparative use of these data). Considering gender and employment data over time, under "Indicators of the economic activity of disabled persons" in Zambia and in Tunisia, the author shows how a serious misinterpretation could take place if there is not "a clear understanding of how the disabled population changed during the period"; and also how a "faster growth in rate [of employment] for disabled women than for all women could be viewed as progress but the increasing disparity in the rates [between disabled men and disabled women] could be viewed as a lack of progress." Underlines the hazards of incautious use of statistical data on disabled people.
CHAMBERS, Robert (1997) Whose Reality Counts? Putting the first last. London: Intermediate Technology Publications.
Over 20 years, while teaching development studies, Chambers has extended and updated his examination of the inflexible mindset of advisors in agricultural and economic aid, and the ways in which inappropriate 'western know-how' has discarded, discouraged or suppressed local experience and initiative across the developing world. [Lessons are there for the disability world to learn, but evidence of such learning is weak.]
COHEN, Lawrence (1998) No Aging in India. Alzheimer's, the Bad Family, and Other Modern Things. Berkeley: Univ. California Press. xxv + 367 pp.
The book is a rambling, contrapuntal ethnography from a western anthropologist studying the older and 'ageing' body and person in Indian (and some western) situations of everyday life, and also in archives and cultural histories. Cohen spent some time working in an urban slum, yet neither 'disability' nor 'poverty' is given prominence. The book is concerned with perceptions and discourses of impairment and difference in mind, body and relationship, by people in families, communities and societies that have been continuously shifting throughout the lives of those who are now old. One of the movements has been from a society in which all aspects of life were dominated by religious belief and practice, toward one of increasing secularisation: while religious archetypes continue to be inescapable, they have ceded some ground to other rising forces. Family composition and logic are changing, with much reduced living-space available in urban households and the shifting balance of domestic power as traditional female care roles give place to female wage-earning capacity. The inputs (and the costs) of western and ayurvedic medical and psychiatric professionals to the treatment, care or reconstruction of ageing are also observed sceptically. The 'poverty' associated with old age and mental decline may have strong financial elements; but human misery associated with the erosion of personal value, respect and agency, in community and in family relationships, may be more keenly felt than the financial pains of ageing.
CROLL, Elisabeth (1993) The negotiation of knowledge and ignorance in China's development strategy. In: Mark Hobart (ed) An Anthropological Critique of Development: the growth of ignorance, 161-178. London: Routledge.
In a book of edited chapters, largely concerned with the activities of foreign agents bringing inappropriate knowledge and theory to other countries and suppressing or supplanting local knowledge that had often been more appropriate to the local situation, Croll reflects on slightly different developments in China between 1949 and 1976. In that period, local systems of knowledge were (in theory) respected and consulted for guidance by Chinese leaders formulating national policies, which were then filtered back down to the masses in phases, with some leeway for local adaptation. Key local-level cadres were in a position of some tension, being 'insiders' knowing their own rural locality, while receiving 'outside' knowledge from the government. As the latter was based on ideology rather than practical evidence and pragmatic reasoning, it needed some unofficial adjustment or disguise to become implementable. Croll traces the process by which outside knowledge "became increasingly privileged", while the local populations, viewed as ignorant, backward and resistant by high-level administrative cadres, were "increasingly re-categorized" from being agents for change to being the main objects of change. 'Rectification' and 'purification' measures were undertaken, bypassing the local cadres who had muted and adjusted the pure doctrine (supposedly built on knowledge from the masses). Messages in this monumental game of 'Chinese whispers' went up and down the line, becoming reversed, rectified and re-distorted at various points, generating suspicions and mistrust, with the outcome of "fragmenting the local population and undermining the very solidarity of collective structures upon which development policies rested." [While not concerned with 'disability' as such, the description of consultation, policy-making, progressive distortion, and the eventual destruction of solidarity, might well be recognised by development agents and disabled people's organisations worldwide.]
CROSS, Hugh & CHOUDHURY, Ramesh (20050 Self care: a catalyst for community development. Asia Pacific Disability Rehabilitation J. 16 (2) 100-113. At: www.aifo.it/english/resources/online/apdrj/journal.htm [Nov. 05]
The Nepal Leprosy Trust, "unconvinced by conventional stigma reduction strategies that focused primarily on education" because this embodied "Eurocentric logic, that stigma was a simple correlate of ignorance", developed a 'STEP' strategy whereby leprosy-affected people could be seen to benefit their local communities. People affected by leprosy were trained as facilitators to develop self-care groups of leprosy-affected villagers in South East Nepal, surviving in extremely adverse situations. These people then formed a nucleus for development activities approved by the general village community for the general benefit. After three years, interviews and participatory groups were used to evaluate the self-care impact on stigma, impairment and disability of STEP participants, as compared with non-STEP leprosy-affected people elsewhere; and to evaluate impacts of STEP groups within community development activities, as viewed by local people. On both scores, the results were significantly positive. The authors suggest that "a simplistic approach is inappropriate. Self-care demands very much more than the formal transfer of knowledge and simple skills from a health worker with a tick list." Self-care was seen to improve with self-esteem, which was enhanced by taking responsibility for the welfare of others in the community. The evaluators found it remarkable that the STEP groups, starting "mostly illiterate, physically impaired, stigmatized and marginalised", were held in high regard in their local communities three years later.
DAR (Disability and Rehabilitation) team, WHO (2004) Poverty, Disability and Community Based Rehabilitation. Presented at UN ESCAP/CDPF Field Study cum Regional Workshop on Poverty Alleviation among Persons with Disabilities, Lanzhou, Gansu Province, China, 25-29 October 2004. pp. 5. At:
Series of statements and assertions connecting poverty and disability, and advocating CBR, without evidence being offered. (Curious English, possibly machine translated from some unspecified language, and left unchecked).
DCDD (Dutch Coalition on Disability & Development) (2005) Towards inclusive development cooperation. DCDD Policy Plan 2006 - 2010. Utrecht: DCDD. 11 pp. At:
www.dcdd.nl/ [navigate] [Nov. 05]
Recently formulated policy plan and "mission statement", produced in the Netherlands for a national coalition of about 200 members, mostly disability-related or development cooperation organisations. Statement is typical of its kind, full of recent jargon from both the aid field and the disability field. It shows little awareness of the working realities of countries with seriously poor populations, or of the problems likely to be encountered when exporting Dutch experience and parachuting it into countries with very great differences of history and culture.
DFID (2000) Disability, Poverty and Development. London: Dept for Intl Development, Govt UK. At: www.dfid.gov.uk/pubs/files/disability.pdf
Rather dated ideological paper, heavy with clichés and slogans. Citations are mostly unpublished reports or conference papers, or other unrefereed work. The document has been critically reviewed as "High level baloney for Third World disabled people", at:
www.disabilityworld.org/10-12_00/news/baloney.htm, and in Spanish:
EDHI, Abdul Sattar (as told to Tehmina Durrani) (1996) A Mirror to the Blind. An autobiography. Islamabad: National Bureau of Publications. 388 pp.
Maulana Edhi has been Pakistan's best known front-line social worker, serving and strengthening the poor, the injured, the mentally ill and the downtrodden, while denouncing bureaucrats and resisting attempts by powerful people and organisations to co-opt his work or incorporate him in their empires. As a boy in the 1930s, in a small town near Bombay, he learnt to be charitable toward those who were handicapped or destitute, and to defend mentally disturbed people against street bullies (pp. 27-29). One of his ambitions was to "build a village for the handicapped" (p. 34). Years later, living in Karachi, Edhi and his wife Bilquise ran a kind of asylum for mentally distressed or handicapped people, among many activities (pp. 222-28, 237-38), and emphasized the service, caring and public welfare aspects of Islam. The book gives his own story, probably with some biases; yet the results of Edhi's public activities are well known in Karachi and nationally. (Edhi's working methods would undoubtedly seem antiquated to most aid agency staff; but Edhi has worked in Pakistan amidst serious poverty and disability for 50 years, with some apparent success, which those aid staff have not done).
ELWAN, Ann (1999) Poverty and disability: a survey of the literature. Social Protection Discussion Papers Series, No. 9932. Social Protection Unit, Human Development Network, The World Bank. 56 pp.
www.worldbank.org/disability [select: Publications & Reports]
See Introduction to this bibliography. Some useful analysis of terms and categories and meanings of poverty. Most of the literature surveyed concerns poverty and disability in Europe and North America, and the author's discussion here makes use of her professional economics background.
ERB, Susan & HARRISS-WHITE, Barbara (2002) Outcast from Social Welfare: adult disability, incapacity and development in rural South India. Bangalore: Books for Change. xiv + 186 pp. isbn 81-87380-65-9
See annotation under Harriss-White (2003) below. (This published account of disability in the lives of people in a handful of southern India villages benefits from better-designed presentation and an index of subjects. There remains some unevenness between the field-work observations and the political rhetoric, with citation of sources that are similarly mixed).
ESCAP (1999) Report on regional seminar on poverty alleviation among rural persons with disabilities. Institute of Rural Development, Hyderabad, India. [Formerly found at: www.unescap.org/decade/]
EYBEN, Rosalind (2003) Why donors may find it difficult to get to grips with social and political inequality. [Why is Bolivia different from India?] Presented at the Intl Conference "Staying Poor: Chronic Poverty and Development Policy". Univ. Manchester, April 2005.
www.chronicpoverty.org/resources/conference_papers.html [Nov. 05]
"That the day to day practice of international development agencies remains embedded in their colonial and neo-colonial origins is a proposition that many agency staff would not be prepared to recognise"; but Eyben perceives this handicap in her own thirty years of work, and reflects on the maintenance of obscurity in aid jargon, and the behaviours by which aid agency staff may, on a personal level, "help sustain and reproduce the very inequalities that agencies seek to remove."
FINKENFLUEGEL, Harry (2004) Empowered to differ. Stakeholders' influences in Community-Based Rehabilitation. PhD thesis, Free Univ. Amsterdam. At:
This thesis provides, inter alia, a systematic review (pp. 23-48) of 128 peer-reviewed papers concerned with CBR, published in research journals between 1978 and 2002, from about 45 countries or regions. The literature was found to be poorly distributed across the spectrum of knowledge needed about CBR: "the articles available do not enable constructing coherent views about different key aspects of CBR, or about CBR in different countries / regions." (p. 43) Only in two small countries, Guyana and Jamaica, could a substantial picture be built up from research articles produced over a significant period using varied approaches. Other chapters concern practical CBR activities in Southern Africa.
FUJIURA GT & RUTKOWSKI-KMITTA V (2001) Counting disability. In: G Albrecht, K Seelman & M Bury (eds) Handbook of Disability Studies, pp 69-96. Thousand Oaks, Ca.: Sage.
Intelligent review of successes and difficulties in measuring disability and counting disabled people in many countries and on different philosophical bases, to discover "The limits and promise of disability statistics". Of one global survey, it notes that "value-laden decisions undergirded the methodology -- principally, that years in old age and childhood are of less 'value' than years lived in youth, years lived with a chronic condition are years 'lost,' and the presumption of disablement as a burden." (p. 91)
GALLAGHER, Eugene B & STRATTON, Terry (2001) Medicine, disability and family in an affluent Arab society: the case of Zahira Qetub. Current Sociology 49: 207-231.
Detailed study, from hospital records and staff interviews, of Zahira, born with spina bifida, resulting in paraplegia, chronic renal problems, and frequent hospital admissions. Amidst great familial affluence, technology and modern services, the young girl can be seen experiencing significant poverty of personhood, relationship and dignity. Her physical care was repeatedly passed between the wealthy Arab family, hospital medical staff (expatriates of many countries), and the Sri Lankan maid who did most of the home care, i.e. dealing with recurrent urinary infections and incontinence. The different cultural perspectives, paradigms and practices of these parties turned Zahira's body into a battleground between them. Her own views and wishes slowly began to be heard as she moved toward teenage years.
GHAI, Anita (2001) Marginalisation and disability: experiences from the Third World. In: M Priestley (ed) Disability and the Life Course: global perspectives, 26-37. Cambridge University Press.
The author, a disabled Indian woman lecturing in psychology at the University of Delhi, describes in broad terms some of the multiple concepts and understandings of disability in India past and present, and the oppressive effects of negative attitudes on people with disabilities, particularly among the majority who live in serious poverty and deprivation, and in childhood or youth. (See next item).
GHAI A (2002) Disabled women: an excluded agenda of Indian feminism. Hypatia 17: 49-66.
(See previous item). Personal account of the situation of disabled people in urban India, where some modern disability rights legislation exists but implementation is weak or entirely lacking, and the physical environment is not designed to facilitate access. Ghai sees that the borrowed Western agenda has had little meaning for people suffering both negative discrimination and severe poverty. The unequal position of able-bodied girls and women adds additional burdens, which have been a concern of the feminist movement. Yet the needs of disabled girls or women have appeared neither on the Indian feminists' agenda, nor on that of the Indian disability movement.
GROCE, Nora E, CHAMIE, Mary, & ME, Angela (2000) Measuring the Quality of Life: rethinking the World Bank's Disability Adjusted Life Years. Disability World No. 3. Also at:
Detailed and well-informed critique of the World Bank's supposed measurement of "DALYs".
GROVES, Leslie & HINTON, Rachel (2004) Inclusive Aid. Changing power and relationships in international development. London: Earthscan.
Fifteen chapters by authors with a wide variety of development experience, giving a dynamic and critical picture of the changes happening in the aid scene. Includes a graphic Time Line with the major international trends and changes from 1946 to 2004.
[Among 40 recent aid and development books examined in a nearby academic library, this was the one that the present compiler skimmed through and immediately ordered for personal use. The past 20 years have seen a steady rise in critical reflection in the aid industry. This may slowly percolate into the international disability field, but at present it requires finely calibrated instruments to detect any such movement.]
HAMMERMAN, Susan & MAIKOWSKI, Stephen (eds) (1981) The Economics of Disability: International Perspectives. New York: Rehabilitation International. x + 238 pp.
Unusual volume in which several items that could have been impenetrable economic text are combined and illustrated in quasi-newspaper format with many lively photographs, diagrams and cartoons, for a more popular dissemination. The first (pp. 1-29) reports a UN expert group meeting on the "socio-economic implications of investment in rehabilitation for the disabled, Geneva, December 1977. Excerpts are added from a UN study on which that meeting was based. Further, a considerable bibliography of relevant studies, research reports and journal articles, with annotation, is distributed through the various sections under headings on "Disability and Rehabilitation: the conceptual framework"; "Economic and Social Costs"; "Cost-Benefit Analysis"; "Labor Market and Manpower Policies"; "Social Security and Disability Benefit Systems"; with a "Conclusion: Summary of Findings", further bibliography and resource list, and index. Efforts were made to include such evidence as could be found from developing countries, in the economic context of disability.
HARRISS-WHITE, Barbara  Poverty and disability with special reference to rural South Asia. Presented at the Intl Conference "Staying Poor: Chronic Poverty and Development Policy". Univ. Manchester, April 2003. 19 pp.
www.chronicpoverty.org/resources/conference_papers.html [Nov. 05]
Harriss-White, an experienced agricultural economist, took part in several months of field work for a detailed study of the economics and daily realities of life with impairment and disability among the populations of several South Indian villages, producing in 1996 a long report with Susan Erb, which circulated for review comments. The shell of the report comprised the standard campaign rhetoric of poverty, disability, oppression, and stereotypes of people affected by these woes. The inner chapters with the research findings, though written in economists' jargon, were much more interesting, showing a range of effects and probable causes, differences in outcomes, unexpected contrasts between different groups among the poor, and the efforts by many villagers to improve their situation against considerable odds. The material was published in 2002 in India (Erb & Harriss-White, 2002, see above), but parts of the data and interpretation appeared in conferences and edited chapters before and since.
The present paper follows a similar pattern, with protest rhetoric followed by more substance. It reiterates a credible finding, that people in serious poverty, especially women and the 'scheduled castes', often cannot afford to consider themselves 'disabled' or to declare themselves incapacitated. They continue to work, covering their impairment as best they can, until forced to stop and admit to a significant disability. The loss of income affected families severely when a woman stopped work through disability, and disastrously when a man's income was lost.
IDDC (International Disability and Development Consortium) (2004, May) Inclusive Development and the UN Convention: IDDC Reflection paper. 4 pp. + list of members. At: www.un.org/esa/socdev/enable/rights/ahc3iddc.htm [Nov. 05]
Brief summary suggesting, in the usual jargon, that the 15 diverse NGOs forming IDDC share a commitment to a "Rights-based approach", Inclusion, partnership, collaboration, etc. Some statements concerning poverty and disability lack evidence or credibility, e.g. reference to "the poorest countries where 3/4 of the disabled population lives", and the statement that global initiatives to implement the Millennium Development Goals "invariably exclude disabled persons". Other statements more usefully recognise that the relationship between poverty and disability is complex, that culture-specific views on poverty can be misleading, and that disabled people may be especially vulnerable in situations of conflict, emergency and disaster.
ILIFFE, John (1987) The African Poor. A history. Cambridge UP. ix + 387 pp.
Well reviewed, grand historical sweep through African poverty. Extensive, documented references to disability, indexed by region under blindness, cripples, deafness, dumbness, epilepsy, insanity etc, from 16th century onward. Full chapter on leprosy, pp. 214-229 + notes 337-341. Iliffe finds evidence that "The very poor of twentieth-century Africa showed much continuity with earlier periods. Most were either those made destitute by famine or those unable to work and neglected by others. The able-bodied, even when deprived of land or other resources, generally found work to avert extreme poverty, except at moments of conjunctural unemployment." (p. 260)
[ILO] (2002) Disability and poverty reduction strategies: how to ensure that access of persons with disabilities to decent and productive work is part of the PRSP process. Geneva: The Disability Programme, InFocus Programme on Skills, Knowledge and Employability, International Labour Office.
www.ilo.org/public/english/employment/skills/disability/publ/ [Nov. 05]
'Discussion paper' on the ILO site, with ILO insignia, no named author. Vigorous attack is made on one aspect of the World Bank 'Sourcebook' produced as guidance for countries preparing a Poverty Reduction Strategy Paper (PRSP: a strategy launched by the World Bank and IMF in 1999). "The treatment of disability and persons with disability in the PRSP Sourcebook conveys a wrong impression about the abilities and aspirations of the majority of poor persons with disabilities, and is not in keeping with the current human rights approach to disability ... The limited "Social Protection" approach of the Sourcebook has negatively influenced a number of (I)PRSPs, including those that have tried to include measures concerning disability and disabled persons." (p. 2) (No evidence or sources are shown, for the method by which the author obtained the 'correct' impression of the abilities and views of a majority of the world's poor disabled people; nor whether any of them had ever heard of the 'current human rights approach').
The paper gives a different view of how disabled people should be included in the PSRP, analyses the problems seen in the Sourcebook approach, and describes how disabled people figure in the currently available PSRPs. More specific proposals await a further guidelines paper. It is suggested that "in the prevailing economic context of low-income PRSP countries, employment opportunities for persons with disabilities are predominantly, but not exclusively found outside the formal sector." (p. 3) Apart from the vigour of the attack, other curious features include many doubtful and contested assertions without evidence being offered, and without any apparent awareness that there can be more than one point of view on many disability issues.
ILO, UNESCO, WHO (2004) CBR. A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities. Joint Position Paper 2004. Geneva: WHO, ILO, UNESCO. At:
www.ilo.org/public/english/employment/skills/download/jointpaper.pdf [Nov. 05]
Update of the earlier joint statement "Community-Based Rehabilitation For and With People with Disabilities" (1994). The new version, as indicated by its title, attempts to manoeuvre CBR toward the current jargon of poverty alleviation, and to align it with the Millennium Development Goals.
INCLUSION INTERNATIONAL (2003) UN Millennium Goals Do Not Address Disability. At: www.disabilityworld.org/11-12_03/news/unmdg.shtml [Nov. 05]
Inclusion International, on behalf of the world's people with intellectual disabilities, here acts as the proverbial child who shouts out what others in the disability field have politely pretended not to notice, i.e. that the Millennium Development Goals make no mention of disability or disabled people. The I.I. statement offers eight goals in which the MDGs' deficiency is remedied.
INGSTAD, Benedicte (1997) Community-based rehabilitation in Botswana, the myth of the hidden disabled. Lewiston, NY: Mellen. xi + 384 pp.
Ethnographic work concerned with 100 disabled people in 96 families of Kweneng district, Botswana, was done by the medical anthropologist Ingstad in a context of CBR experiments in the mid-1980s. Her book reflects on disability in the lives of individuals, families and communities, living in significant poverty. Many questions are raised about the WHO's approach to CBR, and the lack of serious engagement with the existing knowledge, beliefs and practices in the everyday lives of families having a disabled member. Among the Tswana, "the model of life is based on experience of hardship, of families losing children in infancy or in later life, and of continuous struggle for survival in the face of sicknesses, failing crops, and unemployment." (Ingstad, being herself mother of a severely disabled son, and losing a young daughter while returning from Botswana, had an enhanced interest in how Tswana families coped with disabled members). Pertinent material appears throughout, but the chapter on "The Household" (pp. 169-245; notes on pp. 345-347) offers detailed family histories and discusses the great variety and complexity of how disability is managed, and its impact on family time and resources.
Al-ISSA I (2000) The mental health of Muslim immigrants in Europe. In: Al-Junun: mental illness in the Islamic world, 253-274. Madison, Conn.: International Universities Press.
Reviews a wide range of literature in English and French concerning immigration to Europe of Muslim individuals and families, mostly from North Africa, the Middle East, and South Asia, and the mental health of immigrants from different cultural groups and at various stages in the processes of cultural adaptation. Negative factors are considered such as racial prejudice and harassment, long-term poverty, physical illness, overcrowded housing in poor condition, and cultural conflicts, none of which is conducive to good mental health. Positive resources are found in community support and mutual respect within the extended family. Some barriers of communication exist with European psychiatric staff who may misunderstand what is being communicated by someone with mental illness from a different cultural background.
JADIN, Olivier (2001) La stratégie de Réadaptation à Base Communautaire (RBC) au Bénin et au Ghana. Louvain-la-Neuve: Catholic Univ. Louvain.
Jadin noted in the early 1990s that hardly any CBR program on the "WHO model" had been described and analysed with full statistical data on outcomes and costs. He surveyed and reported activities and outcomes in two groups of disabled people, totalling over 500 participants aged from birth to early 30s in CBR programs in Benin and in Ghana. Much comparative data is tabulated and discussed, with statistical analysis. Jadin describes how CBR was developed in Benin and Ghana, and identifies factors contributing to the success or failure of the CBR work. The Ghana program had major problems, but was later reorganised, apparently on a more successful basis. The Benin program was reportedly successful, and extensions are being made. Jadin covers aspects such as the measurable benefit to the individual and the cost to the service-providing organisation.
HOLZINGER, Friedrich (1899) O latirizmie [On lathyrism]. Nevrologichevsky Vestnik 7 (2) 1-38.
The earliest detailed account of lathyrism in North-East Africa, a third of this Russian article concerns cases in Abyssinia [Ethiopia] in 1896, where young doctor Holzinger was in a Russian Red Cross mission. Holzinger sketched the lathyrus/lathyrism literature of many countries and referred to 19th century Indian and Algerian work, also the Russian epidemic of 1891-1892. He detailed the ill effects of lathyrus sativus (grass pea) consumption and presented twelve case histories of Galla [now Oromo] and Abyssinian people with lathyrism examined at Harar and Addis Ababa, many dating from the great famine of 1888-1892. [Paralysis through prolonged dietary dependence on lathyrus is an outstanding case where severe poverty leads to disability. It is more poignant because the people consuming the toxic pea are often aware of the risk; but the plant thrives when normal crops fail, and the very poor have no other recourse. The toxin was fully identified in the 1960s, and new variants were bred in the 1990s with low toxicity, yet poor people are still being crippled by lathyrism in Ethiopia, parts of the Middle East and South Asia in 2005.]
KABZEMS V & CHIMEDZA R (2002) Development assistance: disability and education in Southern Africa. Disability & Society 17: 147-157.
Discusses changes in external policies on aid to Southern African disability and education development, with examples particularly from Zimbabwe and Lesotho. Aid has tended to follow European ideologies that may be inappropriate to African local practices and attitudes. Aid agencies have become more intrusive, designing and enforcing policies on economic reorganisation, accounting and social practice. A more participatory approach is recommended.
KHAN N & BARI N (2002) Disability in development: from charity to equity [for] people with disabilities in Bangladesh. Zeitschrift Behinderung und Dritte Welt 13: 100-105. At: www.uni-kassel.de/fb4/zeitschriften/beh3w/ausgaben/ [navigate] [Nov. 05]
Outlines some features of the development of services for disabled persons in the context of widespread poverty and adverse attitudes in Bangladesh. Advocates the concept of Community Approaches to Handicap in Development (CAHD) for implementing community-based rehabilitation (CBR), and describes these approaches focusing on social communication, inclusion and rights, rehabilitation, and management.
KLEINMAN A, WEN-ZHI WANG, SHI-CHUO LI, XUE-MING CHENG, XIU-YING DAI, KUN-TUN LI & KLEINMAN J (1995) The social course of epilepsy: chronic illness as social experience in interior China. Social Science & Medicine 40 (10) 1319-1330.
Detailed study of people's lives with epilepsy by experienced medical anthropologists, neurologists and other health personnel in Shanxi and Ningzia Provinces. Under "Financial Burdens" they report that, "Many respondents hold that the financial consequences of epilepsy are serious and even ruinous. Perhaps no other aspect of social life so clearly shows the power of chronic illness to affect the local worlds and reciprocally the local worlds to influence the course of illness and treatment. The current economic transformation of Chinese society marks finances as a major issue of the times, especially so in the very poor regions where our study was conducted. ... The social welfare net of communalized life is no longer available to prevent the poorest in China from falling into extreme poverty. In low-income societies in Asia, Africa and Latin America and among the poor in high-income societies, all that it takes to push families off their thin perch is a serious illness. The economic constraints on the social course of epilepsy and other chronic illnesses often means the difference between receiving treatment and not, between remission and relapse. The illness in turn, transforms the economic conditions of everyday life, using up terribly limited reserves, creating or deepening debt, forcing families into humiliating and often unavailing negotiations with creditors, who are themselves under financial pressure." (Many complex assertions are made here, for which the journal paper provides no evidence. The authors' breadth of anthropological and ethnographic experience lends some plausibility to these remarks, which seemed worth quoting directly. See also Kohrman, next).
KOHRMAN, Matthew (2005) Bodies of Difference: experiences of disability and institutional advocacy in the making of modern China. Berkeley, Ca.: Univ. California Press. xvii + 285 pp.
Amid much theoretical material, discussion of terminology, and focus on the body of Deng Pufang and the Federation he founded, Kohrman provides some ethnographic observation of people with disabilities living in considerable poverty in rural areas, of the personal effects on them of vast social changes taking place in recent decades, and of the "Rehabilitation Poverty Loans" run by the China Disabled Persons' Federation. Under Chairman Mao, the old kin-based mutual support system had been replaced by communal production teams, basic health clinics that provided practically free services to local populations, and some ethos of voluntary neighbourly service in the cause of humanity and nation-building. As national politics changed, the free health services crumbled and the communal ethos was replaced by competitive individualism, while the old kinship obligations had disappeared. Some disabled people were thus stranded in serious poverty, being able to tap neither the traditional resource, nor its ideological replacement. (See also Shang Yingchun, below).
KYEONG-HEE CHOI (2001) Impaired body as colonial trope: Kang Kyong'ae's "Underground Village". Public Culture 13: 431-458.
After surveying stories with prominent disabled characters in 20th century Korean fiction and drama from over 30 writers, and noting some changes in disability terminologies, the paper focuses on Kang Kyong'ae's novella "Underground Village" (1936 and 1939), where the author deploys characters with significant disabilities as a critical commentary on the national body of Korea suffering colonial occupation and rule by Japan (1910-1945). The "manifold dysfunction of the impoverished village" in the novella enabled Kang to examine various forms of economic and political oppression, without attracting official censorship in the initial edition in 1936.
LAKKIS S (1997) Mobilising women with physical disabilities: the Lebanese Sitting Handicapped Association. In: L Abu-Habib (ed.) Gender and Disability. Women's experiences in the Middle East, 28-35. Oxford: Oxfam.
An initial phase of mobilisation and enroling disabled people as organisation members took place in Lebanon in the 1980s, with an emphasis on solidarity on the model of trade unions. Later a survey was conducted which suggested that disabled women were subjected to much greater social, economic and educational disadvantages than disabled Lebanese men. It was realised that the empowerment of disabled women needs to be specifically targeted, so action was taken to create opportunities for disabled women in development, challenging the stereotypes of their social roles and employment potentials.
LEVERS LL (2002) Examining northern Namibian teachers' impressions of the effects of violence, gender, disability, and poverty on young children's development: school-based countermeasures. J. Children & Poverty 8: 101-140.
Detailed studies were made on teachers' awareness of psychosocial and economic factors affecting children's classroom performance in the northern district of Namibia, where longstanding political conflicts have added some traumatic experiences to the existing severe poverty of everyday life. While the adverse effects of such an environment are apparent, the resilience of some children was also noticed, and some positive effects of school countermeasures through social support, persistent teacher attention, and counselling provision.
LWANGA-NTALE, Charles  Chronic poverty and disability in Uganda. Presented at the Intl Conference "Staying Poor: Chronic Poverty and Development Policy". Univ. Manchester, April 2003. 36 pp.
www.chronicpoverty.org/resources/conference_papers.html [Nov. 05]
The abstract of this paper makes several interesting assertions, e.g. that the study "focuses on the relationship between chronic poverty and disability in [Uganda], and it argues that disabled people are not only among the poorest of the poor in the country, but that they remain poor for very long periods of time, and from generation to generation." The methodology was essentially one of interviews with key informants, disabled people, and focus groups, and community discussions. Communication was rendered more difficult by the researchers' adoption of an alien conceptualisation of disability, i.e. the so-called 'social model', which did not correspond with the way disability was perceived in the community. Relevant literature for review was very limited. Respondents and informants readily reported strong connections between disability and poverty, with some statements shown in Ugandan languages, and translated to English. Some useful points are recorded, but it remains unclear how far the beliefs expressed by the informants were grounded in any externally verifiable facts, or were commonly-held beliefs with sufficient anecdotal support to lend some plausibility, with no more solid grounding. While the report is informative about disability as lived and perceived in Uganda, the connections with poverty are asserted, rather than demonstrated.
MASSET, Edoardo & WHITE, Howard (2004) Are chronically poor people being left out of progress towards the Millennium Development Goals? A quantitative analysis of older people, disabled people and orphans. J Human Development 5: 279-297.
The answer to Masset & White's question may well be 'Yes'. (But see critical remarks in Introduction, above, on these authors' methods of arriving at an answer.) The paper draws attention to more government survey data, in developing countries, than many western researchers seem to be aware of.
MILES M (1998) Disability in Civil Society & NGOs: historical responses & current developments in anglophone Eastern & Southern Africa. In: F Hossain & S Myllylä (eds) NGOs Under Challenge - Dynamics and Drawbacks in Development, 126-141. Helsinki: Ministry of Foreign Affairs of Finland, Dept. Intl Development Cooperation.
Broad historical review, taking account of the usually weak socio-economic circumstances of disabled people and some of the traditional and current sources of help on which they have drawn in Eastern and Southern Africa.
MILES M (2002) Formal and informal disability resources for Afghan reconstruction. Third World Quarterly 23: 945-959. Also at:
www.uni-kassel.de/fb4/zeitschriften/beh3w/ausgaben/2003_1.pdf [Nov. 05]
From 1980 to the present, most Afghans with disabilities have had to live with whatever modest resources they found in themselves and their families, as turbulence has continued across Afghanistan. Much of the population experienced severe economic poverty and sharply constricted life chances. A significant minority became refugees in Pakistan or Iran. The paper notes some informal help and positive Afghan cultural resources and Muslim teaching, as well as some prejudicial attitudes. Efforts were made to promote an adapted Community Based Rehabilitation to enhance the knowledge and skills of families with disabled members. Local resource centres and community organisations played some part, and can be useful resources for disability service in national reconstruction. The participation of disabled people as beneficiaries and employees in all reconstruction programmes should be given priority, as well as culturally sensitive programmes to serve girls and women.
MILES M (2003) International strategies for disability-related work in developing countries: historical and critical reflections. Zeitschrift Behinderung und Dritte Welt 14 (3) 96-106. At:
www.uni-kassel.de/fb4/zeitschriften/beh3w/ausgaben/2003/ZBDW3-2003 [Nov. 05]
International strategies and discussion on disability-related work in developing and transitional countries has largely reflected recent European and American ideologies and practices, regardless of whether these are appropriate to four-fifths of the world where historical development has been different and a majority of the current population live in significant poverty. Historical material attests the variety and complexity of social responses to disability in the non-Western world, which seem to give a culturally more relevant foundation for service planning and development than the latest experimental strategies from post-industrial nations. (The paper is a curious amalgam of historical evidence and current polemics).
MITRA S [2004, April] The capability approach and disability. [Forthcoming in: J Disability Policy Studies.] 42 pp. At:
www.disabilityresearch.rutgers.edu/Sophie/MitraCapabilityApproachDisabilityPaper.pdf [Nov 05]
Summarises various theoretical models of disability, presents Sen's "capability approach" [see Sen, this bibliography], and uses it to analyse three sets of factors involved in disability: the personal characteristics, the resources, and the environment, of the individual. Mitra sees some convergence between Sen's capability approach and the WHO's 'International Classification of Functioning' approach to disability. She finds that it has "important implications for the analysis of employment issues for persons with disabilities and of the economic sources and consequences of disability." (p. 34)
NAZZAR A, BAWAH AA, DEBPUUR C, KANYOMSE E, BINKA FN, AYUURE J, NGOM P & ADONGO P (1999) Survey on Disability in Upper East Region (Ghana). A report submitted to the Department of Social Welfare (Accra). Navrongo Health Research Centre. 31 pp.
[Downloaded c. 2002. No longer found online.]
Large disability sample survey in a remote area of Ghana, made by a team including experienced researchers. The detailed report contains some results that differ from orthodox doctrine. In a population of 46,000, the disability rate was 5.5%, equal for males and females, higher in rural areas (5.8%) than urban (4.7%). In children aged 6-18, current school enrollment was 39% for those with disability, as against 54% (non-disabled children). Work/income status among disabled people aged over 10 years also compared poorly with non-disabled people; yet 40% had some work and income. Among this 40%, three quarters reported that their income was inadequate. In households having a disabled member, 18% reported 'no problem', while a diversity of problems was reported in the majority, including "physical handling of the disabled, psychosomatic problems, and constraints related to household income", and access to medical, educational and training services. The report by no means minimises the problems and costs of disability for the majority; yet for a significant minority, disability was not perceived as too serious a problem.
NGHIEM XUAN TUE (2005) Vietnam country/review paper, for the Workshop on Community-Based Rehabilitation (CBR) and Poverty Alleviation of Persons with Disabilities, UNESCAP, Bangkok July 2005. At:
www.worldenable.net/cbr2005/papervietnam.htm [Nov. 05]
Provides the (culturally-demanded) self-congratulatory description of growth and achievements during 18 years of CBR in Vietnam. PWD are stated to be "6.4% of the total population" and "87% live in rural areas and most of them are from poor families..." Poverty alleviation is said to be part of the "national program on hunger eradication and poverty alleviation." Successful CBR helps PWD to find work and improve their income, health, etc.
OKRI, Ben (1991) The Famished Road. London: Jonathan Cape. London: Vintage edition (1992), viii + 500 pp. isbn 0099929309.
The harsh life of a Nigerian shanty town somewhere between city and forest at the close of the colonial period is described through the eyes of the 'spirit child' Azaro, who has returned for another rebirth amidst human beings "all of whom are born blind, few of whom ever learn to see." (p. 1) The narrator is a sharp-eyed, stubborn little boy whose father earns a pittance as a labourer while his mother hawks items at market or on the roadside. Survival amongst the wretched of the earth, with severe beatings at home and school and aimless adult brutality, is interspersed with dream sequences in a spirit world populated by freakish entities. These are often depicted with gross abnormalities, having multiple heads or as midgets or with smashed features (pp. 15, 25, 134, 136, 274, 305, 326, 455, 459-460, 473), who are eventually understood by Azaro as not being humans (p. 136). Some characters in the 'ordinary' world are more normally disabled. One is an old blind man of the neighbourhood, who perceives that Azaro is a spirit child and who engages in various mischief and magic (pp. 313-314, 318-322, 349, 361-362, 393-400, 415, 420, 428, 454, 456, 464-465, 470, 472, 474-475). Other disabled characters vividly described through the boy's eyes are incidental to the narration, such as the market lunatic (p. 17), the lame woman "deformed in a way I couldn't define" (p. 38), the blind head-priest who is Azaro's grandfather (p. 70), some six-fingered strangers (p. 77), the madman who smashes up Madame Koto's bar (pp. 83-85), the cross-eyed man and "the weird, the drunk, the mad, the wounded, and the wonderful", not to mention the albinos, in the same bar where Azaro hangs out (pp. 87, 89, 102, 106-108, 133). Somewhere between the mystical, the magical and the real are various deformed tramps and beggars (pp. 415-416, 422, 429-430, 442-444, 447, 466).
Deformity and freakishness are mostly signals warning of mischief and violence in both the slum and the spirit world as perceived by Azaro; yet most of the 'normal' humans also appear grotesque to his eyes. While this prize-winning novel may also be interpreted in political terms, Okri's considerable descriptive talent offers alternative 'evidence' on poverty and disablement.
PANDE, Namita & DALAL, Ajit K (2004) In reflection: making sense of achievements and failures of a CBR initiative. Asia Pacific Disability Rehabilitation J. 15 (2) 95-105. At: www.aifo.it/english/resources/online/apdrj/journal.htm [Nov. 05]
The authors were involved from 1992 to 1997 in developing a CBR project in five villages mostly of scheduled and backward castes in a rural district bordering western Uttar Pradesh, and have followed disability-related activities and developments since. In their reflections, the complexity of the village CBR events, and of possible interpretations, is still emerging. "We were elated when the programme moved along predicted lines but most of the times remained confused for it would digress in unforeseen trajectories. All through, the programme oscillated between achievements and failures as did our 'sense-making' of its outcomes." The legitimacy of promoting CBR, "when even safe drinking water was a scarce resource", was questioned by one disabled person, while another thought the game was to fob off disabled people with a cheap substitute instead of competent services. Different groups in the villages had priorities that were irreconcileable. When people realised that the CBR project had no external funding, it vanished from local power battles and calculations. Some myths underlying the CBR concept are exposed in this unusually frank and thoughtful account.
PRYER, Jane, ROGERS, Stephen, & RAHMAN, Ataur (2003) Work, disabling illness and coping strategies in Dhaka slums, Bangladesh. Presented at the Intl Conference "Staying Poor: Chronic Poverty and Development Policy". Univ. Manchester, April 2003. At: www.chronicpoverty.org/resources/conference_papers.html [Nov. 05]
SCHEPER-HUGHES, Nancy (1992/1993) Death Without Weeping: the violence of everyday life in Brazil. Berkeley: Univ. California Press. xiii + 614 pp.
This award-winning book is a classic account of barefoot anthropological observation, intermittent participation and ethnography on women living in desperate poverty, rearing many children and often burying them, in slum towns of North-Eastern Brazil between 1964 and the late 1980s. (The author had begun as a health activist, later became an anthropologist, and tried to keep such roles separate; but eventually the women forced her to participate in their struggles for survival, rather than sitting useless, merely making notes, p. 18). Infant and child mortality were very high. Surviving children suffered chronic hunger, dehydration and micronutrient deficiencies, with resultant low resistance to disease and consequent impairments. Scheper-Hughes describes at length (pp. 364-399) the locally-constructed and flexible syndrome of the 'doomed child', small from birth, attacked by fevers, convulsive, visibly wasting away, often rendered witless, lethargic, discoordinated or paralysed, mute, epileptic, possessed -- such infants and children were seen as liminal, unprepared for life, failing to evoke the protective instincts of their mothers (with some exceptions). Once the stigma had fallen on them, such children were considered as good as dead; so it was better to let them 'go back to God'. The moral knife-edge could be generalised: "The sickly, wasted, or congenitally deformed infant challenges the tentative and fragile symbolic boundaries between human and non-human, natural and supernatural, normal and abominable." (p. 375) [Similar scenes of rejection, sometimes with desperate counter-measures and denunciation of the death-doers, are still played out in courtrooms of wealthy nations, with rooftop vultures in the form of the mass media...] Caught between seriously conflicting human valuation systems, Scheper-Hughes noted the sadness and also the resilience of the women whose lives she had visited.
SEN, Amartya (1999) Development as Freedom. Oxford UP.
Sen did economic research on many aspects of Asian and African lives in poverty for 30 years before the Nobel economics prize made him a world figure. His "capability approach" to analysis of standard of living has had some impact in the economics of poverty, and also lends itself to discussion of disability within poverty (see e.g. Mitra, S. this bibliography). The "capabilities" that a person has are understood as "the substantive freedoms he or she enjoys to lead the kind of life he or she has reason to value", and these obviously vary a great deal according to many factors, other than individual's financial income or capital. Sen's chapter 4, on "Poverty as Capability Deprivation" (pp. 87-110) takes up briefly the impacts of "Handicaps, such as age or disability or illness" on capabilities (p. 88), but much of the chapter focuses on other 'handicaps' such as unemployment, gender inequality, and other major indicators of poverty.
SHAKESPEARE T & WATSON N (2001) The social model of disability: an outdated ideology? Research in Social Science and Disability 2: 9-28.
The 'social model' of disability, articulated among a group of disabled British male academics in the 1970s and 1980s, is often found half-digested in European discourses on development aid, and therefore also in papers from developing countries that aim to be sexy by reflecting the jargon of their aid masters. It is described more critically, and differentiated from North American social approaches to understanding disability, by Shakespeare & Watson. The dominant idea of the social model, redefining disability as something caused by an oppressive society and ill-designed environment rather than by impairment of the individual's body, has some immediate explanatory appeal and saw some success as a political slogan and rallying point, By the 1990s it seemed an unassailable doctrine in the British disability movement. However, the model fails to give sufficient attention to a range of interests in bodily functioning, impairment, chronic illness, pain, and prevention, which in practice are not entirely distinct from disability. The over-emphasized social model has also generated unreal distinctions between disabled and non-disabled identities, neither accommodating the reality of multiple identities nor the need for flexibility in political manoeuvring. Tom Shakespeare was a keen advocate and defender of the social model in the 1990s, but found it necessary to move toward a more nuanced understanding, paying closer attention to reports given by many disabled people about their own lives.
SHANG YINGCHUN (2005) Policies and initiatives for poverty alleviation for persons with disability in China. A country paper, for the Workshop on Community-Based Rehabilitation (CBR) and Poverty Alleviation of Persons with Disabilities, UNESCAP, Bangkok July 2005. At: www.worldenable.net/cbr2005/paperchina.htm [Nov. 05]
China is said to have "60 million persons with disabilities" (a little below 5% of the population), "80% of whom live in the rural areas"; and 10 million "now can provide for their own basic necessities". This brief paper states that poverty alleviation for PWD has been targetted since 1992 when 20 million were "under the poverty line". That number had been reduced to 10.65 million by the end of 2004. A nationwide household survey in 1997 had tried to make the data more accurate, and the planning more specific. Government funds were distributed for employment skills training, loans to disabled people's associations, housing improvements, and other services. Much remains to be done.
SILLA, Eric (1998) People Are Not The Same. Leprosy and identity in Twentieth-Century Mali. Portsmouth, NH: Heinemann.
Detailed, well-written account, based on doctoral research, concerning people with leprosy in Mali whose lives have been spent in very considerable poverty and social degradation. Starts from Arabic descriptions by Ahmad Baba al-Tinbukti, c. 1600, and proceeds to personal accounts of individuals organising themselves for group campaigns through the 20th century, while medical advances and complex social changes shifted the battlegrounds and affected their struggles for identity.
SILVERS, Anita (1998) Disability Rights. Encyclopedia of Applied Ethics vol. I: 781-796. San Diego: Academic Press.
Detailed and useful analysis, by a professor of philosophy, social campaigner and long-time wheelchair user, of the meanings and implementation of "disability rights", as well as other current terms, models and ideas in the disability field.
SORIA, Nuria Felipe (2004) Disability: consequence of poverty and cause of rural hunger. Disability World No. 25. At:
www.disabilityworld.org/09-11_04/news/hunger/shtml [Nov. 05]
SRINIVASAN H (2003) Rehabilitation of leprosy-affected persons. Indian J. Leprosy 75: 91-108.
Discusses marginalisation and social and economic problems of people with leprosy, mainly in India. Details common public misconceptions about leprosy and rehabilitation, the lack of accurate and relevant data, and the fact that current rehabilitation efforts are seriously inadequate to meet the needs of people whose leprosy has clinically been cured but who face a lifetime of disability amidst poverty.
SVEDBERG, Peter (2004) World income distribution: which way? J. Development Studies 40: 1-32.
Svedberg, a professor of development economics, tabulates and discusses a range of recent economic studies on income distribution and poverty, mostly covering the later 20th century. The aim is to show how researchers' different assumptions, definitions, quality and weighting of available data, and other varying parameters, lead to sharply divergent accounts of what is actually going on between the poorer and richer countries, and between different groups within poor countries. The limitations and ambiguities of the various approaches used, and the presentation of results often without sufficient cautionary notes, enable advocates for various conflicting policies to find data that appears to support their policy choice. It can be shown that many millions of people are significantly better off than they were a few decades earlier; yet at the same time, hundreds of millions have probably made no real progress, and perhaps an equal or greater number have disappeared from official knowledge, to an even worse economic position. The complexity of such movements, and the multiplicity of causes and operators, cannot easily be grasped. (Most of the books and papers in the present bibliography seem to be dangerously simplistic, in the light of Svedberg's analysis). The sole prediction of which Svedberg is certain, is that "the absolute per capita income gap between the richest and the poorest countries will inexorably continue to grow over the next two or three decades."
THOMAS, Maya (2000) Feasibility of integrating people with disabilities in savings and credit programmes in Bangladesh. Asia Pacific Disability Rehabilitation J 11 (1) 27-31. At: www.dinf.ne.jp/doc/prdl/othr/aprdj/apdrj.html
Reflections based on analysis of responses to a questionnaire survey among NGOs working in the community in Bangladesh, with some follow-up visits. Modest participation of PWD in savings and credit schemes was reported, and more could probably be achieved by specific inputs to remove or reduce barriers. Apart from the financial benefit, PWD who did participate were reported to derive various social and psychological benefits.
TIROLER, Gabor (2003) Nordic projects in the South. Where do people with disabilities come in? Zeitschrift Behinderung und Dritte Welt 14 (3) 107-112. At:
www.uni-kassel.de/fb4/zeitschriften/beh3w/ausgaben/ [navigate] [Nov. 05]
Nordic countries included disability projects in development aid since the 1980s. Tiroler questions how far the lives of disabled people in the poorer Southern countries were improved by such aid, and whether Nordic policy intentions were fulfilled. Successes and failures are discussed from Ghana, Nicaragua, Sri Lanka and Zambia.
TOMLINSON S & ABDI OA (2003) Disability in Somaliland. Disability & Society 18: 911-920.
Brief report on the adverse socio-economic conditions in the "Independent Republic of Somaliland", and the services and public attitudes toward disabled people. Some NGOs are trying to develop services and facilitate the expression of disabled people's views, in very difficult conditions.
TURNBULL CM (1972) The Mountain People. London: Jonathan Cape.
Between 1964 and 1967, Turnbull lived among and studied the Ik people in the mountains of northern Uganda. Through socio-economic changes, the Ik were reduced to near-starvation, and Turnbull saw the disappearance of what he had believed to be 'normal' human care for weak, disabled or elderly people having kinship or tribal claims. Care was replaced by mockery and cruelty toward young or old disabled people, abandonment of weak and elderly people to starvation, and trampling of the weak and infirm by a crowd rushing towards a food source (pp. 112-14, 131-37, 225-29, 267). Turnbull was known for unconventional approaches and interpretations, but there is no reason to think that he fabricated or exaggerated reports of what he saw, which he found deeply disturbing.
TVEDT, Terje (1998) Some notes on development research and ethics. Forum for Development Studies (1998:2) 211-227.
Some of Tvedt's points are highly pertinent for the scrutiny of work listed in the present bibliography. He points out that researchers "have quite often been involved in formulating policies and have thus become politically responsible for policies they later are supposed to analyse dispassionately, objectively and honestly." He suggests that "most researchers will have experienced that research interest, research questions and even conclusions have been influenced by those who pay for the research." He finds it alarming that "these important ethical issues, related to questions about the distance to and freedom from bureaucratised government and aid industry and how this relationship is handled in the daily practice of the individual researcher, are so seldom discussed or researched." [These are plausible concerns, in the case of development researchers, who at least have some training and professional responsibility to seek objective evidence and to design studies so as to minimise personal biases. There should be still greater concern for the case of the many writers and activists in the development field who lack any research training or sense of professional duty.]
UN ESCAP (Economic and Social Commission for Asia and the Pacific) (2002/2003) Biwako Millennium Framework for Action Towards an Inclusive, Barrier-Free and Rights-based Society for Persons with Disabilities in Asia and the Pacific. E/ESCAP/APDDP/4/Rev.1 24 January 2003. Bangkok: UN ESCAP. [Version published by Asia Pacific Disability Rehabilitation Journal Group, Bangalore, India.] iii + 33 pp.
The Biwako Millennium Framework sets out a series of goals, agendas and commitments, and targets for the positive transformation of Asian and Pacific societies to include disabled people in meaningful ways, based on earlier, more general declarations and Millennium goals. Section IV (G) (Framework paragraphs 44-50, pp. 24-27), is titled "Poverty alleviation through capacity-building, social security and sustainable livelihood programmes." It concludes with the broad "Target 21. Governments should halve, between 1990 and 2015, the proportion of persons with disabilities whose income/consumption is less than one dollar a day." Details are then given for eleven actions required to achieve the target, bringing disabled people specifically into existing programs to meet Millennium Development Goals and some specific additional strategies.
UN ESCAP (2004) Joint Statement on Poverty Alleviation Among Persons with Disabilities. Adopted at the UN ESCAP / CDPF Field Study cum Regional Workshop on Poverty Alleviation among Persons with Disabilities, Lanzhou, Gansu Province, China, 25-29 October 2004. pp. 2. At:
www.worldenable.net/cdpf2004/jointstatement.htm [Nov. 05]
Brief statement with the usual recommendations flying at great altitude.
WALLACE, Tina & CHAPMAN, Jenny (2003) Is the way aid is disbursed through NGOs promoting a development practice that addresses chronic poverty well? Presented at the Intl Conference "Staying Poor: Chronic Poverty and Development Policy". Univ. Manchester, April 2003. 9 pp. At:
www.chronicpoverty.org/resources/conference_papers.html [Nov. 05]
Much of the paper reads like a research proposal, but the final section "Some critical emerging findings" is of interest. The studies exposed a tightly controlled hierarchy in the "aid chain", with increasing conditionalities in NGO aid. "Management by log frame", first used for engineering projects, conveys the expectation of change as "linear, logical, controllable and measurable", consumes large amounts of field staff time, rewards English language capability above other skills and competencies, and serves as an instrument of control. Southern staff reportedly experience such management as culturally alien, but suppress feedback for fear of jeopardising their careers. The authors suggest some culturally more appropriate approaches.
WERNER, David (2004) Cuba's Pilot Project in Community Based Rehabilitation. Newsletter from the Sierra Madre #52. Also at:
www.healthwrights.org/static/NL52.pdf. [Nov. 05]
Werner, probably the world's most broadly experienced front-line rural worker, advisor, evaluator and teacher in Primary Health Care and community disability services, detailed his recent observations and evaluations in Cuba over Newsletters #51 and 52. An embattled piece on Cuba's health care achievements occupies #51 (same URL, ending /NL51.pdf). [According to UNICEF's State of the World's Children 2005, Cuba with per capita GNP around 1200 US dollars has a reported Under-5 Mortality Rate of 8 or 9 per 1000. It shares this U5MR level with Chile, Estonia, Hungary, Kuwait, Slovakia, UAE, and USA, having GNPs of respectively 4400; 5000; 6400; 16400; 4900; 18000; and 37000 dollars. Even allowing for possible cosmetic adjustment of figures, the data suggest that Cuba has some interesting ways of applying its modest resources in basic health services.]
In Newsletter #52, Werner evaluates the CBR pilot in Cuba, which started later than in many countries and has given a central management role to disabled people. Werner was impressed by the dedication and perseverance of front-line volunteers, in a country where there is still widespread poverty. The involvement of the countrywide network of formal health and welfare services was also strong, and visible efforts were being made for changing community attitudes and services to become more inclusive of disabled people. These features are congruent with the national ideological stance. Weaknesses were noticed in technical and therapeutic areas, as the CBR workers' formal training was too brief. Their knowledge and skills were adequate in half of the treatments and activities offered to disabled people and families, but had "serious weaknesses" in the other half observed. Follow-up and continued training of the volunteers was insufficient. They lacked problem-solving skills, and had insufficient reference material of an appropriate level. These weaknesses, which Werner has seen in CBR programs worldwide, could be resolved by the application of more resources, which he thought was likely to happen in the Cuban situation.
WHYTE, Susan R & MUYINDA, Herbert (2002) Finding people where they live: the view from a tricycle in Busia. In: S. Hartley (ed) CBR. A Participatory Strategy in Africa, 127-136. London: Institute of Child Health.
Some disabled men scratch a living by moving goods on hand-cranked tricycles across the Uganda-Kenya border without paying duties. This is lauded as "local initiative and resourcefulness", and "a superb example of the way communities can take action" without foreign aid, exploiting a niche, building "a clientele of businessmen who could rely on [the disabled men's] honesty and dependability", as against relying on local shopkeepers whose prices are undercut by the smugglers. As the illegal trade grows, Uganda's revenue officers begin "demanding duty and confiscating goods" and fail to see why disabled men are above the law. Able-bodied smugglers move to small cross-border paths out of town, inaccessible for the tricycle users. However, the disabled tricyclists now form the nucleus of a Disabled People's Organisation, campaigning to improve their lives. And the reporters got their story.
WIARDA, Howard J (1985) Ethnocentrism in Foreign Policy. Can we understand the Third World? Washington DC: American Enterprise Institute for Public Policy Research. v + 67 pp.
Wiarda, a senior American professor of political science, and specialist in international affairs, examined how a "deeply engrained American ethnocentrism" led both US political wings to exhibit "the same appalling ignorance of Third World areas, the same patronizing and superior attitudes, the same inability to countenance models of development other than our own, and the same insistence that we know best for the Third World." He suggested ways in which American policy could become less ethnocentric and more relevant to the Third World. [The current position, 20 years later, hardly suggests that much progress has been made.]
WORLD BANK (2003) Making Services Work for Poor People. World Development Report 2004. New York: World Bank. xvi + 271 pp.
www.econ.worldbank.org/wdr/ [and scroll] [Nov. 05]
With detailed contents (pp. v-xii), overview (pp. 1-18), endnotes and references (218-248), this report examines in considerable detail the successes and failures of global and national "aid and development" during the past 30 years in assisting governments and NGOs to provide basic services such as water, food, housing, education, health, and employment to the economically poorer half of the world's population.
The report recognises the immense complexity and variety of the human situation based in different cultural and historical backgrounds; and reiterates that "One size will not fit all" (J Wolfensohn's Foreword, pp. xv-xvi). For various sectors, one may try to analyse whether "Eight sizes fit all" or "Six sizes fit all?" (pp. 13-14, 75, 91, 106-107, 154-156), or "Eight sizes fit all with adjustable waistbands" (p.15); yet "There is no single path" (p.154), "There is no 'right' way to make sure services reach poor people. The appropriate technical interventions -- and the institutional structures that generate them -- vary enormously." (p. 108) The successful strategies in one country have failed in another even when the parameters looked fairly comparable (pp. 35-38); or have served the richer people in a economically weak nation, while failing to reach the poorer majority (pp. 39-40). The ways in which donor agencies work, and some needed reforms, occupy chapter 11 (pp. 203-217). Presentation is highly professional, with a variety of text, boxes, diagrams, graphs, tables, maps, case histories, to assist the assimilation of complex material (by users of graduate level, with good English reading ability).
Almost no reference is made directly to 'disability', presumably for two reasons: (i) almost everything in the report seems to be equally relevant to services for disabled people among the global poor; (ii) in the period (2002-2003) when this report was being prepared, the World Bank set up a special unit (2002-2005) to study disability and see how disabled people can better be integrated into development processes.
YEO, Rebecca (2001) Chronic Poverty and Disability. Frome: ADD (Action on Disability and Development). 34 pp. At: www.chronicpoverty.org/pdfs/04Yeo.pdf
Compendium of beliefs and exaggerated assertions found among European aid agencies, on disability and poverty in the 'South'. While admitting that very little solidly grounded evidence exists ("As disabled people are among the most severely marginalised people in the world they are also among those least represented by any research", p. 7), Yeo suggests that anecdotal evidence is sufficient, and it is more important to focus research on practical benefits than on "gathering data to prove something that is already well known" (p. 6) (The report's bibliography contains none of the thousands of journal articles and unpublished documents actually produced during the 20th century in developing countries concerning the lives of their disabled people).