M. Miles, UK. firstname.lastname@example.org
March 2006. Version 3.7
An earlier version of the “Modern Materials” section first appeared in DisabilityWorld (Dec. 05 - Jan. 06), titled “Poverty, Disability, and Development Aid in Economically Weaker Countries”, at: http://www.disabilityworld.org/12-01_06/povertydisability.shtml, and is here revised and extended, and reproduced by kind permission.
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, methodology and evidence used in the documents listed.
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 look good in what follows; nor any pleasure in criticising the ones that look good but smell bad. The exercise has been 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 possible directions forward.
Disability, Poverty, Complexity
In the past 30 years, demand slowly grew for aid and development policies and strategies that had been field-tested and shown to be affordable, sustainable, and flexible enough to work 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 a more thoughtful “Making Services Work For Poor People” in 2004. Disabled people have appeared a little 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’ are placed together, simplistic slogans soon arise (e.g. “Disabled People are the Poorest of the Poor”) to discourage 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. Could it be 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 written on disability in the ‘non-western’ world; but far fewer using credible methodologies, focusing specifically on disability and poverty in developing and transitional countries, with publication only after critical peer review. Such a level of evaluation and accreditation, i.e. anonymous draft texts submitted to close scrutiny and review by independent academics who are qualified and experienced in the specific field and have no financial or career interest in the outcomes; then returned with detailed comments to authors for revision before publication, is the ‘gold standard’ for academic knowledge-production. It aims to exclude reports based merely on authors’ personal views, experiences, prejudices, wishful thinking, undeclared financial interests or political agendas.
Even with academic peer review, flawed material still passes unchallenged. For example, a paper (Masset & White, 2004) is listed below by a researcher and a fellow at a prestigious institute, with a title directly relevant to the present bibliography, based on data from India, Bulgaria, Ghana, Nicaragua, and Vietnam. (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 cases**), 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 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 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 indeed be reasonable. More rigorous research might give 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.** The flaws then sailed past the scrutiny of university-based peer reviewers and editors, to be fixed in print.
[** Note After first publication of part of this bibliography, Dr White wrote stating that there had been editorial changes in the tabulated data and in the arrangement of what he and his co-author had written, altering the balance of discussion. These changes were printed without the authors being able to review and correct them. This complaint (which is perfectly credible, on the present compiler’s experience with other journals) highlights one hazard of peer-reviewed publication: the care and professional judgement of authors and reviewers may be defeated by editorial bungling or copy-editors adding last-minute errors.]
The same paper also gives other questionable data, reducing the credibility of its theoretical discussion, as in the Bulgaria data (as published): disabled males were shown as 11.8% of poor males and 10.4% of all males; disabled females were 10.7% of poor females, and 13.2% of all females; but disabled people were 14.2% of all poor people, and 11.8% of all people. Even imagining some large, hidden, gender imbalance, such data cannot all be correct. The disabled people among all the poor cannot have been 14.2%. They might have been around 11.2% or 11.3%, so the 14.2 figure could be a misprint for 11.2; but then the figures would present a second case with less disabled among the poor than among the total population. Masset and White do in fact give further analysis, using age pyramids to suggest possible reasons for the data they offered (before editorial rewriting, and possible printing errors). The independent, anonymised, peer review system, in which the present compiler has taken part as an author and a reviewer for 20 years, does filter out much nonsense from journals, but unfortunately some still gets through. (Did the reader actually check those few little calculations in the previous paragraphs, 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, or from wealthy families; but we simply know that the majority are poor, and maybe one third are in desperate poverty. Those are the millions we are concerned with.’ This ‘guessed’ knowledge might be realistic. Yet it is worth noting that in most identity or interest groups, national leadership does not arise randomly; it often comes to those with greater education, wealth and urban location. Among that minority, the views of those fluent in a European language are more likely to be heard by western development agencies. Such inputs certainly have value, but are seldom based on careful research among the population supposedly represented. Westerners easily end up ‘knowing for certain’ many things which in truth are no more than 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 250 items listed below make no claim to have been evaluated by independent scrutineers with qualifications in the specified field. Some 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 much cited in subsequent literature as though it were a World Bank publication of global relevance. 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 comprising most of her evidence; she also traced 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 much published and unpublished information and evidence about disability and disabled people in developing countries through 200 years, including census data and considerations of poverty (see e.g. http://cirrie.buffalo.edu/bibliography/ ) All such information needs careful scrutiny, but it does exist. Much of it was compiled by people who were not aiming to support one disability policy or another (unlike some western research, see Tvedt, 1998, below).
To tackle the present field adequately would require significant training and experience in the disability field, in development 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 knowledge and experience. At best, people with training in two or three fields have made 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 autobiographies (from Pakistan and Senegal), a ‘magical realism’ novel (Nigeria), literary criticism (Korea), an ethnographic ramble through ageing (India), a historical ethnography of people with leprosy (Mali), a 4th century theological address (Cappadocia), the legal code of China’s Qing dynasty, and other varied literature. Over 60 countries have some representation of their disability experience in this bibliography. No apology is made for this curious assortment. Far more needs to be learnt from a wider range of sources and cultural experiences, before well-informed, culturally- and conceptually- appropriate and efficacious planning might become possible.
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 bibliography was hastily compiled in July 2005, supplemented by an historical section of similar length, and has been revised and extended between November 2005 and March 2006. It is far from satisfactory, whether in the selection or the annotation. There is very likely some 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, Chronic Poverty, AIFO, and some Nordic aid sites, have further pertinent material on various aspects of the field. Apologies are offered for geographical imbalance, with very little from North Asia, Latin America, South East Asia or Oceania, and for over-dependence on work in English.
Annotations. These are not uniform. Some were made at different times and places over the past ten years, for various purposes. All have been reviewed, but some are still more informative than others, some more critical, some more idiosyncratic. None of the annotations should be used as a substitute for reading what the author(s) actually wrote, which might evoke a different response in another reader.
Threats. Major trends are visible across the world, such as population pressures sharpening conflicts over water and cultivable land, rapid urbanisation, increasing environmental pollution, global warming, many secondary social ill-effects of AIDS, all of which impact adversely on people living in poverty, and more heavily on disabled people and their families in poverty. These threats find little space in the literature listed below. They are of course painful to contemplate. Perhaps it is sufficient to be, for example, female, disabled and living in Africa: one is already doomed, there is no need for earthquake, HIV diagnosis, or urban guerillas on the roof. Yet these threatening trends must be faced by planners looking 10 or 15 years forward. They will not disappear.
One of very few positive trends may be the growth and accessibility of research-based and critically evaluated human knowledge during the later 20th century. It is harder to discern any corresponding rise in human wisdom, in the sense of capacity to harness large areas of knowledge, experience and insight, and apply them with justice and compassion in the service of humankind, both locally and globally. Without such capacity, the growth and spread of knowledge might further empower a small minority in each country to control and oppress the majority. Studies of disability in the 21st century -- cultural representation, human difference and dignity, services, economics, inclusion with difference, genetics and biotechnology, ethics, religion and law -- could be an experimental field for monitoring and enhancing the growth of human wisdom; or noting its failure to grow.
URLs. Most of the URLs were verified during November 05 (with many changes since July 05, not all coherent at some sites). Some items need 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, 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 www.econ.worldbank.org/wdr/ [and scroll down]. It has almost nothing specifically on 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.
An unfortunate corollary of this welcome flexibility at the World Bank is that some web published WB discussion papers display a surprising level of carelessness. The fact that they would be presented “without being formally edited” hardly absolves authors from the duty to scrutinise their own text carefully, so that at least their figures are internally consistent, and their non-technical discussion can make sense to interested readers of graduate level. ... [Here, two more examples were put on the rack; but after careful consideration have been deleted. The global scientific field has powerful mechanisms for monitoring and (eventually) correcting clear errors. In the social sciences, mostly with much looser ‘philosophies of knowledge’, such corrective processes are hardly visible. This bibliography might contribute to developing an appetite for stronger research; but it does not aim to detect and burn any witches.]
* Valedictory dedication *
The 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 from cancer has removed a dedicated and inspiring co-worker.
[Item found in more than one section]
circa [about, roughly]
Community Based Rehabilitation
Christian Era, or Common Era (A.D.)
editor(s), edited by
Medical (Medicine, Médicine)
Person with disability
Sacred Books of the East (ed. M Mueller)
Social Science and Medicine
(Once again, it is emphasized that this is only a small selection from a vast field of literature).
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.
ADERINTO, Adeyinka Abideen (1997) Breaking through barriers: a survey of disabled entrepreneurs in Ibadan city. African Notes, 21 (1 & 2) 86-94.
A survey is reported from Nigeria, of 71 disabled people who had chosen not to join other disabled adults in begging alms for their support. These were mostly people with a physical disability, or deaf or blind. Lacking job opportunities, they had taken up self-employment and ran their own small businesses, as shoe-makers, tailors, traders, hairdressers, carvers or weavers. Only 10% of these businesses were registered, so the others lacked access to banking facilities and capital. Most of the businesses were in an unsatisfactory state. Various steps by the government could assist such people to better success.
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 et al (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).
BRAND V (1984) Socio-economic factors affecting the rehabilitation of paraplegics in Zimbabwe. African Rehab. J. 1 (4) 5-8.
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.
CAKINER T, YUKSEL A, SOYDAN M, SAYLAN T, BAHCECI E (1993) Women and leprosy in Turkey. Indian J. Leprosy 65: 59-67.
Data on 829 women with leprosy (97% now inactive) registered at Istanbul Leprosy Hospital, many having a high level of disability and weak socio-economic status.
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.
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: M Hobart (ed) An Anthropological Critique of Development: the growth of ignorance, 161-78. 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 (2005) Self care: a catalyst for community development. Asia Pacific Disability Rehab. 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 Rehab.) 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: www.worldenable.net/cdpf2004/papercbr.htm
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.
DESOUKEY, M A-A S (1988) The link between disabilities and some demographic and socio-economic indicators in Egypt: a case study. Research Monograph Series No. 18, pp. 285-320. Cairo Demographic Centre.
DETTWYLER, Katherine A (1994) Dancing Skeletons. Life and death in West Africa. Prospect Heights, Ill.: Waveland.
Painfully frank account of ordinary life, disease and death in rural Mali, with disability casually interleaved. The author leaves her 4-year-old son (who has Down’s syndrome) back home in the US, but takes her 9-year-old daughter on anthropology-cum-health field-work (“Miranda was along mainly because I needed the company”, p.3), measuring children’s growth, or more likely their wasting and stunting from malnutrition. Dettwyler describes children and adults with significant impairments, not always obvious (to the foreigner) in the normal daily background of severe poverty and social deprivation. Some features were shockingly obvious, such as a huge untreated hydrocephalic head; others, such as large goitres, seemed to pass unnoticed by local health workers (pp. 31-35, 82-89, 93-98, 103, 108-110, 117, 136, 160). Notions of American Motherhood collide sharply with local realities of what can be offered to children with extremely poor quality-of-life prospects (“I gave her one last hug and a balloon and sent her out the door after her siblings” p. 98). The benefits of civilisation (“Women in the United States might have the freedom to choose not to give birth to children with handicaps...”) are balanced against a different kind of society in which “women in Mali had freedom from worrying” over such ethical problems, but worried instead about evil spirits striking their child (p.99).
DFID (2000) Disability, Poverty and Development. London: Dept for Intl Development, Government of 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. This 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:
DHUNGANA, Bishnu M (2006) The lives of disabled women in Nepal: vulnerability without support. Disability & Socy 21: 133-46.
Based on interviews with 30 physically disabled Nepali women chosen by “purposive sampling”, a uniformly negative report is made on their lives of poverty, deprivation and negative discrimination. While “access to health, education and work opportunities is extremely limited for the entire population” of Nepal, for a majority of disabled women in the study, they were “not only unable to satisfy their basic needs but were confronted with the problem of actual survival: almost all of households did not have basic house facilities such as electricity, water or a toilet. Lack of literacy was the primary source of poverty for women with disabilities after reaching working age.” The opportunities for disabled males were reported as universally better than those for disabled females. However, while 13 of the disabled women were said to have “no education at all”, 10 of them had high school education (five completed, five partial), while six of the disabled women “attained campus level but only two managed to achieve a bachelor’s degree”. [Such levels of secondary and tertiary education, if correctly reported, would be well above average for able-bodied women in Nepal, and indeed for the whole South Asia region, in 1998-2002, as per UNICEF’s State of the World’s Children 2005; but Dhungana gives no such data, perhaps because it would not reflect the hypothesis of unrelieved deprivation and misery. The UNICEF data might be wrong; or, more likely, the participant sample might be biased toward people whose education and situation predisposed them to emphasise their dissatisfaction.] The complaints of lifelong gender-based discrimination, ill-treatment by mothers-in-law, unsympathetic employers, inaccessible working environments, and a lack of information or power to change their lives, are familiar from many studies of girls and women in South Asia; so it is entirely plausible that these factors apply equally or more severely to women with disabilities. That disabled people’s legal rights to free education, health service and other supports, exist on paper but are “mythical” in practice, also reflects the reported Asia-wide situation. [Yet an impression persists that this study omits some more interesting information. “Twenty-four women out of 30 faced humiliation in the community because of their disability”, most often “underestimation” or “the mocking or teasing of their neighbours”. But what of the remaining six? Did they have decent, kindly neighbours? Were they sometimes teased, but gave back as good as they got, gaining a reputation for wit and spirit? Did they have any positive experience that could be offered as an achievable norm toward which Nepal could work?]
DISLER, Peter [with E JACKA, JS PUTTERILL, M HOFFMAN, R SAYED & GS WATERMEYER] (1984) Poverty and Disability. Carnegie Conference Paper No. 186. (Second Carnegie Enquiry into Poverty and Development in Southern Africa). Cape Town: University of Cape Town, School of Economics. 120 pp.
To investigate “the problem of chronic disability in the context of poverty”, a questionnaire and interview survey was made of available formal disability-related urban resources and services in the Cape Peninsular and of the situation and views of 104 physically disabled people (as service consumers, some months after discharge from Groote Schuur Hospital). The disabled people (in the categories of the time: 58 Coloured, 29 Black, 17 White) were mainly “from a low socio-economic strata”. People (mostly women) caring for 41 disabled close relatives were also interviewed. Results are analysed, with a discussion of future strategies having realistically modest expenditure. Disler et al found that “in our Nuclear family system in which the subsistence provided by each person is vital to survival, the extra burden of a non-contributing member, especially one who has abnormal needs, is all that may be needed to disturb the delicate balance of the budget” (p. 83). Services were poorly coordinated and very scantily available, whether for richer or poorer families needing them; but the poorer were much more likely to be prevented by distance and transport costs from gaining access (p. 82). Consequently “the responsibility devolved on a family member” (p. 91; see also p. 102); yet these carers received little or no preparation or support in the caring role. Some disabled people did receive a small pension, so that their carers did not have an additional financial burden. Disler et al suggested that the modest available service budget could be used more widely and effectively by switching from curative to preventative measures; greater involvement of traditional healers in the community; and paying much closer attention to the articulation by disabled people of what they thought, and the kinds of service provision they would prefer.
DUDZIK, Pamela, ELWAN, Ann, & METTS, Robert [no date shown] Disability Policies, Statistics, and Strategies in Latin America and the Caribbean: a review. Unreviewed Working Paper for the Inter-American Development Bank (IDB), not endorsed by the IDB. 33 pp.
[Undated paper, maybe reaching its present form early in 2002. One reference is cited from 2002; yet the authors seem unaware that WHO’s ICIDH-2 classification became the ICF (Intl Classification of Functioning, Disability & Health) in May 2001.] A sketch is made of disability concepts, definitions, UN commitments, policies, statistics, and costs of disability, in recent Latin America and the Caribbean, based on an informal IDB survey, some Pan American Health Organisation data, and a literature review (89 items cited; 25 apparently with a published research basis). The lack of adequate or reliable data is noted. Country reports of disability prevalence (in household surveys and censuses) show widely varying data still in use even within single countries. A section on “Poverty-related Causes” makes generalisations about poverty, malnutrition, exposure to disease, accident risks etc. Under “Economic and Social Costs of Disability”, the authors endorse a statement rejecting the idea that disabled people “constitute a burden”. Later they suggest that “women, more than other family members, are more likely to function as caregivers for children with disabilities. This often means that they are unable to invest in themselves.” [No inter-cultural reflection is offered on which kind of Latin American or Caribbean people would prefer to “invest in themselves”, and which might regard giving care to their own family members as an activity of high value.]
EDHI, Abdul Sattar (as told to Tehmina Durrani) (1996) A Mirror to the Blind. An autobiography. Islamabad: Natl Bureau of Publications. 388 pp.
Maulana Edhi is 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 A (1999) Poverty and disability: a survey of the literature. Social Protection Discussion Paper, No. 9932. Social Protection Unit, Human Development Network, The World Bank. 56 pp. www.worldbank.org/disability [select: Publications & Reports]
See above, 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.
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.
See annotation under Harriss-White (2003) below. (Published account of disability in the lives of people in a few southern India villages. Benefits from better-designed presentation and an index of subjects. Still some unevenness between the field-work observations and the political rhetoric, with citation of sources that are similarly mixed).
ERITREA. (2004) Interim Poverty Reduction Strategy Paper. Asmara. 75 pp. At: http://www.er.undp.org/docs/i-prsp-er.pdf
Amidst detail of the weakened state of the post-war national economy, and the straitened circumstances in which much of the population lives, paragraph 4.50 on “Disabled.” (p. 45), outlines some services for “vulnerable and disadvantaged persons, including disabled war veterans, and the very poor.” Special education is being provided for some deaf or blind people, and “skill-training facilities for all disabled aimed at job creation”.
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/ ]
EVANS, Timothy (1989) The impact of permanent disability on rural households: river blindness in Guinea. IDS Bulletin 20 (2) 41-48.
Based on a large, cross-sectional survey in Guinea, a hypothetical household of husband, wife, one son, two daughters, was constructed to view the typical household effects, over 15 years, of blindness through onchocerciasis and its consequences. Briefly, in Phase 1, all five have good eyesight, man and wife both do agricultural work. P2, man now visually impaired, but still working (also baby boy born, and wife again pregnant). P3, man has severe visual impairment, can work only a little (wife now has TB, heavily burdened, one infant dead of measles, all but older daughter have worsening health and nutritional status); P4, man now blind, unable to work (wife’s health deteriorating; older son doing some work; older daughter marries and leaves, younger daughter now visually impaired). P5, man is blind, wife dead, one daughter blind and pregnant, older son permanently migrates out, only younger son has some earning capacity, all in poor health, the family is now destitute. The typical stages and variations are explained in detail, without apparent exaggeration. Preventative and rehabilitative programmes used elsewhere in West Africa show the possibility of avoiding the destruction of this ‘typical household’.
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 flaw 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.”
FILMER, Deon (2005) Disability, Poverty and Schooling in Developing Countries: results from 11 household surveys. World Bank Special Protection Discussion Paper No. 0539.
At: www.worldbank.org/sp [and navigate]
Uses surveys of different kinds in widely varying countries: Cambodia (1999, 2000) Jamaica (1998, 2000), Indonesia (2000), Mozambique (1996), Romania (1995), and Burundi, Myanmar, Mongolia and Sierra Leone (all 2000), with sample sizes mostly between 4,000 and 25,000. Disability prevalence (on various definitions) ranged from 0.13% to 2.77%. The expected concentration of young people with disabilities in poorer households was not confirmed in a statistically significant way. The percentage of children with disabilities, and without disabilities, attending school was tabulated for ages 6-11 and 12-17 in 8 countries. In almost all cases, those with disabilities were substantially less likely to attend school than their non-disabled peers. The proportion of younger / older disabled children reportedly attending school was: Burundi 14.6% / 48.0%; Cambodia (1999) 18.1% / 30.6%; Cambodia (2000) 37.8% / 46.5%; Indonesia 29.2% / 18.3%; Jamaica 70.5% / 50.2%; Mongolia 41.0% / 47.1%; Mozambique 34.2% / 29.3%; Romania 57.7% / 35.7%. Analysis is shown of various possible contributing factors and trends. Non-comparability of the data is noted, and “the results should be treated as tentative at best”.
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, Glenn T & RUTKOWSKI-KMITTA, Violet (2001) Counting disability. In: G Albrecht et al (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)
FUJIURA GT, PARK HJ & RUTKOWSKI-KMITTA V (2005) Disability statistics in the developing world: a reflection on the meanings in our numbers. J. Applied Research in Intellectual Disabilities 18: 295-304.
A further intelligent paper, tackling difficult issues of what disability data can do well, what it cannot do at all, and the meanings and feasibility of measuring disability, including intellectual disabilities, in widely varying ‘developing nations’.
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 UP.
The author, a disabled Indian lecturing in psychology at the Univ. 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.
GREENE, Lawrence S (1977) Hyperendemic goiter, cretinism and social organisation in Highland Ecuador. In: LS Greene (ed) Malnutrition, Behavior, and Social Organization, pp. 55-94. New York: Academic Press.
Historical background from the periods of Inca and Spanish rule, which instituted a strongly hierarchical society, leads on to presentation of an “extremely isolated community” of 1600 people, living at 4300 metres altitude, in the north-east of Pichincha province, Ecuador, where more than half the population had goitres, 6.0% were “deaf-mute ‘cretin’ individuals”. A further large number had less visible yet significantly disabling neurological deficits and behavioural limitations, of which Greene took some measure using the Bender Gestalt test of neurological maturation in visual-motor perception. Some case histories are given. Individuals with mild to moderate deficits “demonstrated a range of capabilities that permitted them to do much of the routine work” in this agricultural-pastoral subsistence economy. The more capable, among those affected, had a market advantage over ‘normal’ workers, by allowing themselves to be exploited “on a 24-hour basis and at a much lower cost. The deaf-mutes were also extremely docile and accepted unpleasant work, like sleeping in the fields with the animals...” The more powerful classes regarded those with neurological deficits as an inferior race and a convenient pool of cheap labour for the heavier routine tasks. “They do not view these phenomena as possibly being neurologically based behavioral deficits produced by nutritional factors that they themselves have caused, to a considerable extent, by the stratified nature of the social system and the uneven distribution of essential resources.” Payment was almost always in agricultural produce, but the docile labourers were easily manipulated by a show of affection, to accept smaller payment. Greene suggests that similar systems exist in many parts of the world, where micronutrient deficiencies generate neurological deficits in stratified populations, and the more powerful are happy to perpetuate this exploitable situation. (Greene notes that this study is part of a much longer series led by Rodrigo Fierro-Benitez, with many publications in Spanish and English).
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: Rehab. Intl. 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 fieldwork 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 (Intl 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.
[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 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 Intl, 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, 253-74. Madison, Conn.: Intl 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.
[+] JANZEN, John M (1994) Drums of Affliction: real phenomenon or scholarly chimaera? In: TD Blakely et al (eds) Religion in Africa, 160-81, (bibliog. 443-83). Portsmouth, NH: Heinemann.
Janzen reviews a quarter century of his own and other scholars’ concern with affliction and misfortune in the lives and beliefs of economically poor people in Central, East and Southern Africa, suggesting some of the movement of ideas and fresh approaches. (His title refers to Victor Turner’s book, “The Drums of Affliction”, 1968, on the Ndembu of Zambia). Processes of seeking remediation for chronic sickness have most often been followed within the sufferer’s kin relations; but in cults of affliction, the supporting cast may be based not in kinship but in personal experience of suffering. This also occurs where kin support has diminished through social change or disruption, and formal services hardly exist to supply the need. Thus perhaps “rituals of affliction have provided a format for calling positive attention to people who are marginalized or afflicted, such as women, or the handicapped, or people who are struck with misfortune in economy-related tasks such as hunting, women’s reproductive capacity, or commerce.” (p. 173). In some mid-continental countries, “rituals to deal with women’s disorders, reproductive problems, physical deformities, work-related disorders of various kinds” (etc) have been differentiated, unlike those in some more southerly countries (174).
KABZEMS V & CHIMEDZA R (2002) Development assistance: disability and education in Southern Africa. Disability & Socy 17: 147-57.
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. Soc. Sci. Med. 40 (10) 1319-30.
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).
KUPIEC, Roxana S (2006) Experience of disability: Costa Rica. In: GL Albrecht et al (eds) Encyclopedia of Disability, II: 662-66. Thousand Oaks, Ca.: Sage.
Brief review, suggesting that “The social and economical context in which the majority of people with disability live in Costa Rica, in many cases conditions of extreme poverty, has influenced the quality of life of disabled people and is still limiting their access to services particularly in their own communities and in rural areas of the country.” Some broad progress has been made toward including disabled people in service provisions and legal entitlements, and the great majority of children with special educational needs were enrolled in regular schools.
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 enrolling 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.
MALAWI. Govt of Malawi & UN (1993) Situation Analysis of Poverty in Malawi. Lilongwe: Govt Malawi. 209 pp.
Disability appears on pp. 149-50, 172, 193-94.
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: 279-97.
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, and calls for strategic changes in future data collection, to further elucidate the situation of vulnerable groups.
MILES M (1987) Vocational rehabilitation: realities for the rural disabled person. African Rehab. J. 2 (10) 13-14. Updated (2001): Vocational rehabilitation: barefoot realities in North West Pakistan. At: http://www.independentliving.org/docs3/milesm1987a.html
This is barefoot micro-economics: in much of the rural world, “Disabled people’s relatives provide them with basic food and shelter for life, as far as they are able. They might not perform this duty with much pleasure, but they are well aware that it is their duty.” A project in Pakistan aimed to learn the components and processes of making cheap, basic items of everyday life, offering these to disabled young people as home crafts for local markets. The crafts are economically marginal, with earnings insufficient for self-support; yet with very small start-up costs they could contribute financially to a family. That changes the disabled person’s role and self-esteem and can change attitudes, within local capacities and ecology.
MILES M (2002) Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Socy 17: 643-58.
Hydrocephalus and spina bifida often result in severe disability. Risks can be much reduced by immediate surgery and careful management, but neither is available in most of sub-Saharan Africa. Review of 60 years of surgery and aftercare in African countries suggests that high mortality was linked with family poverty and distance from hospital. Surgical facilities were little use “unless perinatal care was modernised, home-delivering midwives sent neonates for immediate surgery and families followed up with appropriate aftercare.” Community-aware surgeons recognised the problem for families to “bring their infants from outlying districts on infrequent, time-consuming and expensive transportation for clinic visits, during which frustratingly little seemed to be done.” They also knew that “The poorer the parents, the less likely are they to be able to provide reasonable, safe conditions for the child or to have the money to return the child to hospital if the [shunt] valve blocks” [quoting: D Seligson, LF Levy]. This paper traces attempted solutions and some socio-cultural resources that historically have supported family and community care for severely disabled children in East Africa.
MILES M (2002) Formal and informal disability resources for Afghan reconstruction. Third World Quarterly 23: 945-59. Also at:
www.uni-kassel.de/fb4/zeitschriften/beh3w/ausgaben/2003_1.pdf [Nov. 05]
From 1980 to the present, almost all disabled Afghans have had to live with whatever modest resources they found in themselves and their families, as turbulence continued across Afghanistan. Much of the population experienced severe economic poverty and sharply constricted life chances. Several millions became refugees in Pakistan or Iran. The paper notes some informal help and positive Afghan cultural resources and Muslim teaching, also some prejudicial attitudes. Efforts were made to promote an adapted CBR 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. Culturally sensitive programmes are needed if services are to reach 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 have 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 most of the current population lives in significant poverty. Historical material attests the variety and complexity of social responses to disability in the non-Western world. That may give culturally more relevant foundations for service planning and development, than the latest experimental strategies from post-industrial nations. [The paper is a curious mixture of historical evidence and current polemics.]
MITRA, Sophie [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 ‘Intl 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)
MITRA S (2005) Disability and Social Safety Nets in Developing Countries. World Bank Social Protection Discussion Paper, No. 0509. 45 pp. At: www.worldbank.org/sp
Review of literature on disability and poverty, and their definitions, measurement and monitoring, with detailed study of how people with disabilities may be brought into ordinary systems of social security, or more specifically targeted schemes, and the merits or disadvantages of these two broad patterns of approach. Guidelines for application in developing countries are the main aim. (Yet realistic evidence of what actually takes place in the poorer nations is not plentiful, being hampered by the very great range of local laws, circumstances and official mentalities, and the large gaps between official rhetoric and street realities. Discussion in this paper tends to fall back on examples more readily available from the western nations, where both the economies, the legal frameworks and the administrative and statistical capacities tend to be much more robust than is usual in the developing world.)
NAGI, Saad Zaghloul (2001) Poverty in Egypt: human needs and institutional capacities. Oxford: Lexington Books.
Chapter 4: “Health, disability, and poverty”.
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 enrolment 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 [politically-required?] 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.
PANDE, Namita & DALAL, Ajit K (2004) In reflection: making sense of achievements and failures of a CBR initiative. Asia Pacific Disability Rehab. 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 irreconcilable. 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]
SABRY, Sarah (2005) The Social Aid and Assistance programme of the government of Egypt -- a critical review. Environment and Urbanization 17 (2) 27-42.
This review is based on the needs revealed in a study of Cairo households living in poverty. The official Social Aid programme aims to provide a minimum monthly income to people such as the elderly, widows, disabled, or divorced women raising children, who have no means of self-support. A series of [globally familiar] hazards is outlined: the resource provision is too small; many eligible people are unaware that they could apply for it; the bureaucratic process is intimidating, slow and unpredictable; etc.
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. 364-99) 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.
SEGAR, Julia (1994) Negotiating illness: disability grants and the treatment of epilepsy. Med. Anthropology Quarterly 8 (3) 282-98.
This detailed study, based in urban South Africa in 1990, notes the major part that old age pensions and disability grants often played in family income, particularly among the poorer households, even though disability grants were hard to acquire and when acquired might later be discontinued. Grants for people with epilepsy were particularly volatile. If a good balance of medication was found and taken regularly, epilepsy was controlled and the medical ‘disability’ ceased; the disability grant might then be withdrawn, leaving an entire household in severe straits. Diagnosis of epilepsy was based on clinical consultations (the technological methods being slow, expensive and not always reliable), so patients had little incentive to comply fully with the medication regime (of which in any case they might have little understanding). Some physicians were inclined to play detective if they thought patients were playing games to obtain or continue a disability grant. Others found it more sensible that patients who complied with the medication regime should not thereby be penalised by withdrawal of an important part of their household income, in a context of high unemployment and widespread poverty.
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, appears, half-digested, in European discourses on development aid, and reappears in papers from developing countries that aim to look attractive 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 social model idea, 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 generated unreal distinctions between disabled and non-disabled identities, neither accommodating the reality of multiple identities nor the need for flexibility in political manoeuvring. 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, with closer attention to reports from many disabled people about their own lives. Meanwhile, the original slogans continue bouncing around the disability aid scene in distant countries, in many of which the elementary services that European social model advocates took for granted (e.g. country-wide education, health and welfare services, with trained staff and management) remain a distant dream.
SHAMSHUDIN, Anwar (1994) Deaf culture in Pakistan. In: CJ Erting et al (eds) The Deaf Way. Perspectives from the International Conference on Deaf Culture 75-77. Washington DC: Gallaudet UP.
Mostly on the poverty, traditional cultural barriers, and privations of deaf children and adults.
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 targeted 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.
[See annotation under SILLA in historical (Africa) section, below]
SILVERS, Anita (1998) Disability Rights. Encyclopedia of Applied Ethics vol. I: 781-96. 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.
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 on leprosy and rehabilitation, the lack of accurate and relevant data, and the fact that current rehabilitation efforts are inadequate to meet the needs of people whose leprosy is clinically cured but who face a lifetime of disability amidst poverty.
STRONG, Nicolette (1996) Feminisation of poverty in Riverlea. Agenda no. 31, pp. 68-80.
A survey of poverty in female-headed households is reported from Riverlea, Johannesburg, a suburb known for its massive overcrowding, poverty and severe social problems (unemployment, violence, crime, substance abuse, gangsterism, family instability, etc). ‘Disability’ was not a major focus, but played a prominent casual part as pensions for disability or old age were the main source of income for 40% or more of the poor, and were a significant factor in the total income of many households.
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. [Perhaps an equal number have disappeared from official knowledge, to an even worse economic position, though Svedberg does not suggest this. 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 Rehab. 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 disabled people 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, disabled people 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 & Socy 18: 911-20.
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.
TVEDT, Terje (1998) Some notes on development research and ethics. Forum for Development Studies (1998:2) 211-27.
Some of Tvedt’s points are highly pertinent for scrutiny of work listed in the present bibliography. He notes 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 is unhappy 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 having at least some training and professional duty to seek objective evidence and to design studies that minimise personal biases. There can be still greater concern for the case of many writers and development activists 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 Rehab. J. 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. 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. 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 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 Reynolds (1998) Slow cookers and madmen: competence of head and heart in rural Uganda. In: R Jenkins (ed) Questions of Competence: culture, classification and intellectual disability, 153-75. Cambridge UP.
Meanings of mental incompetence among the Nyole people of Eastern Uganda are described and discussed, with attention to terminology, individual cases in family context, and ways of management in the community. One person with mental peculiarity, “Obutu”, had a rather fine religious obsession, the “angelic construction project”. This he was building not only in his imagination, but by ‘construction’ on a massive scale in fields of several acres (with land and bricks ‘borrowed’ from his brothers): “a heavenly city of the future where all of us, men and women, black and white, Muslims and Christians, angels all, will enter into a life of harmony and ease” (p. 168). The idea had come from God. Ordinary eyes could see a series of “wide ditches and pillars of locally made bricks”; but the author was given a tour with description of the great city that was taking shape for the benefit of humankind. Obutu’s vision was not widely shared in the vicinity. His brothers gave him food and shelter, but were unhappy that useful land had been requisitioned for a project lacking any clear earthly benefit.
WHYTE SR & 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, 127-36. 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.
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 (218-48), 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, 154-56), 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, and services provided for their uplift and self-help.]
YEO R (2005) Disability, poverty and the new development agenda. Disability KAR. (Knowledge & Research) At: www.disabilitykar.net/docs/agenda.doc
The paper skates lightly over many complex economic and political issues in the development field, taking some critical views while also listing British newspaper columnists as though they were competent authorities. Compared with the previous item, this paper does commendably display some awareness of the complexity of the issues involved, and the improbability of workable strategies being developed on the basis of simplistic ideologies and slogans. The author has begun to realise that countries bringing in finely worded policies and cosmetic laws, with neither the budget nor the intention for implementing them, or even publicising them, are not serving disabled people well. It is also recognised that the “so-called ‘rights-based approach’” to disability lacks universal street credibility. Yet naive slogans and unsupported generalisations are still prominent in this paper.
The modest selection of items below, out of thousands across historical Asia, the Middle East, Africa and Europe, tells of disabled people who lived in poverty, many of them barely staying alive by begging or by a charitable dole, while some maintained themselves by their own handicrafts, literacy or other skills. A further considerable number were very probably assisted by their family members, except in the recurring situations where families and whole communities were also being swept away by famine, flood, disease or war.
Many of the articles or books were written by expatriates, some more observant than others, some with particular agendas to push. The quality of evidence behind these papers is very variable, and all should be treated with caution, yet without excessive incredulity. Sometimes a naive account of a brief visit may depict quite sharply the situation of some disabled people who had become invisible to those who passed them every day for 30 years. On the other hand, a few capable, self-supporting disabled people are mentioned, on whom one might build a comforting hypothesis; yet it is almost never possible to know whether those people represented a sturdy 30%, or 3%, or 0.1%.
With the present focus on Disability and Poverty, many of the historical items record basic welfare measures, charitable exercises, poverty relief, etc, at some risk of reinforcing modern condescension toward earlier populations. The more ‘positive’-sounding development of education and vocational training for children and adults with disabilities has mostly been omitted, though in the long run such activities in many countries, particularly since the 1850s, have had significant effects on the lives of beneficiaries with disabilities.
These items are offered, with flaws and difficulties acknowledged, in the belief that the past 40 or so years of ‘Social Responses to Disability & Poverty’ research and experience cannot properly be understood without the additional depth and breadth of perspective from several hundred years of earlier experience. Some situations and activities in Africa now are being interpreted by development agents looking at European historical experiences; but many more things could be understood, and perhaps better understood, in the light of Middle Eastern or Asian historical developments, This kind of South-South or South-East cross-illumination also makes it easier to triangulate on the evidence, filtering out specifically ‘colonial’ factors, and generally reaching a stronger and more credible analysis. (Such analysis is not offered here, as it requires very detailed examination by scholars with local expertise. The bibliography suggests some possible tools, and tries to broaden the range of evidence that might be examined).
ANON (1933) What would you have done? Korea Mission Field 29: 131-32.
A blind woman beggar, whose baby son was admitted seriously ill and was nursed back to life, very reluctantly agreed to the hospital manager’s suggestion to let the boy be adopted by a Korean family willing to care for him.
BRUEN, Henry M. (1938) Blind Whang and his tin-type. Korea Mission Field 34: 148-49 (+ photos in front of issue 34).
Mr Whang, a blind Korean of Taiku, devised a method of taking embossed notes using a home-made set of printing types fashioned from old kerosene tins. Bruen sent Whang to the Government special school at Seoul c. 1914, where he learnt to read Braille. On his return, a class was begun in which Whang taught other blind students to read.
BURGESS, John Stewart (1928) The Guilds of Peking. New York: Columbia UP.
Extended study in which the Guild of the Blind appears on pp. 66, 117-18, 124, 131, 137, 159-60, 164, 193, 201-202. Members worked as singers and fortune-tellers, and boys were apprenticed to learn the skills. Mutual help was given, and discipline exercised by the blind guild court. The Guild is believed to date from medieval times.
CANTLIE, James (1897) Report on the conditions under which leprosy occurs in China, Indo-China, Malaya, the Archipelago and Oceania, compiled chiefly during 1894. In: JA Thompson & J Cantlie, Prize Essays on Leprosy, 239-413. London: New Sydenham Socy, Vol. 162.
Based on 75 replies from 383 western physicians (40/86 in China, 4/23 in Korea) to a questionnaire survey sent from Hong Kong. Where leprosy was familiar, populations mostly did not consider it contagious. “Few Chinese exclude their relatives from their homes unless leprosy has advanced so far that the leper becomes objectionable, either from the smell emanating from his sores, or from the unsightly appearance of his face or limbs.” (p. 255). (China, Hong Kong, Macau, Formosa and Korea occupy pp. 239-322).
CARPENTER, Frances (1947) Tales of a Korean Grandmother. Seoul: Royal Asiatic Socy Korea Branch. Reprint 1977, Tokyo: Tuttle, 287 pp.
pp. 79-86, The Blind Man’s Daughter, self-sacrifice of daughter Chung to save the sight of her blind beggar father Sim. pp. 163-72 The Beggars’ Friend, a story of benevolence rewarded. pp. 203-210 The King’s Seventh Daughter; involves the dreaded Great Spirit of Smallpox, who visits families and blinds their children.
DARLEY M (1917) Cameos of a Chinese City. London: CEZMS & Marshall Bros. 210 pp.
pp. 112-13, notes Blind and Leper Villages established from the 10th century CE at Kien-Nang, by ruler Uang Ing-ceng, for blind and crippled people. Missionary work is described with blind people (pp. 114-27), some of whom come through with clear individuality.
DE SOUZA-ARAUJO, HC (1929) Leprosy Survey Made in Fourty Countries (1924-1927). Rio de Janiero: Oswald Cruz Institute. 400 pp. (‘Fourty’ sic)
Reports a voyage around the leprosy world, with observations and references from many countries. Japan (pp. 100-118); Korea (118-124); China (125-33); Philippines (134-210); Federated Malay States (211-14); Malacca Straits Settlement (214-18); Siam (218-19); Dutch East Indies (219-27). Mostly medical, but some useful social and historical data appears, dating back to the 16th century (e.g. 139-40).
DIKÖTTER, Frank (1992) The limits of benevolence: Wang Shiduo (1802-1889) and population control, Bull. School of Oriental & African Studies 55: 110-115.
Official alarm at population growth in the first half of the 19th century generated many individual responses. Leading scholar Wang Shiduo proposed draconian controls, among which “All female children born to poor parents should be drowned; sons that were physically abnormal, or did not have handsome features, should also be drowned.”
DOOLITTLE, Justus (1868) Social Life of the Chinese, edited by P Hood. London: Sampson Low, Son & Marston.
Detailed descriptions of everyday life, mostly at Fuhchau, with illustrations. Notes on blind beggars (pp. 11-12); official dole for destitute disabled people (40-41); care of foundlings, widows (472-78); leprosy camps in Tientsin, and other beggars (524-29); the blind fortune-teller (574-75).
FISH MW (1856) Letter of 5 Nov 1855, The Spirit of Missions 21: 156-58.
Dr Fish, an American physician newly in Shanghai, visited the dwelling of two Chinese members of a small church: “A man suffering from fever and rheumatism, and totally blind, lay on a little pallet almost incapable of motion; while his wife, also blind, and very much emaciated, seemed to be suffering from disease of the heart. The house was a mere hovel, of the smallest dimensions, and without a floor; and as I cast my eyes around the desolate-looking apartments, it seemed hardly possible that two human beings, both sick and blind, could inhabit such an abode; yet here they have lived for years, and here they most likely will die.” (Fish was astonished at the cheerfulness of this couple).
FUJIKAWA Y (1934) Japanese Medicine. transl. J Ruhräh from German original, publ. 1911. New York: Hoeber.
Mentions historical disability-related services. “1302. Ninsho dies. In the last half of the 13th century he founded a leper home in Nara”. “1556. Count Bungo, Otomo Sorin founds a hospital in Funai for the poor and for lepers. Louis Almeida ... takes charge of the patients.” (p.77). Portuguese missionary hospital in 1569 for poor people and sufferers from leprosy (p.29), or “skin eruptions” (p.78). Fig. 3 “Repair of club foot” (after p.56). Specialist in treatment of fractures and dislocations (p.60).
GAMBLE, Sidney D & BURGESS, John S (1921) Peking. A social survey. London: Oxford UP.
The ‘Insane Asylum’ (pp. 125-27). First public blind school, begun 1917 by EG Hillier, a blind bank manager, with Chinese and foreign friends (p.146). Guilds including that of blind musicians, story-tellers etc (pp. 166-74). Christian home for crippled children (p.294).
GAMEWELL, Mary N (1916) The Gateway to China. Pictures of Shanghai. New York: Revell.
‘Foreign Philanthropies’ and ‘Chinese Successes in Social Service’ (pp. 185-216), including work with children and adults with disabilities or conditions such as leprosy, and orphans, foundlings, destitute, those escaping from brothels or other forms of slavery, widowed, old and indigent.
GROEMER, Gerald (1999) The Spirit of Tsugaru. Blind musicians, Tsugaru-jamisen, and the folk music of Northern Japan. With the autobiography of Takahashi Chikuzan. Warren, Mich.: Harmonie Park Press.
Opening chapter (pp. 3-19) sketches the history of blind musicians in Japan through more than 1000 years. Early legends suggest that blind itinerant musicians had a repertoire of sacred and secular texts for chanting while playing the biwa (a kind of lute). They earned a meagre living by transmitting folklore, news, and fragments of Buddhist and Shinto teaching. Over many centuries there were periodic government efforts to control blind people.
HANDLIN, Joanna F (1983) Action in Late Ming Thought. The reorientation of Lü K’un and other scholar-officials. Berkeley: Univ. California Press.
Scholarly study, focusing (pp. 103-218) on Lü K’un (1536-1618), referring to his mother’s blindness, his efforts for training of disabled people for self-support (pp. 149, 161-63, 181-82), and other humanitarian activities, based on his diaries and other writings. Handlin suggests the changes in official thinking about social welfare of communities, exemplified by Lü K’un, with comparison of some other officials.
HANDLIN-SMITH JF (1987) Benevolent societies: the reshaping of charity during the late Ming and early Ch’ing. J. Asian Studies 46: 309-337.
Describes changes in “the method and spirit of charitable giving” in China, 1580-1750, with new types of charitable organisations joining the traditional famine relief and local support of poor, widowed, elderly, orphans and disabled people.
HARTMANN F (1890) Orphanages, asylums for the blind, deaf and dumb, and other charitable institutions in China. In: Records of the General Conference of the Protestant Missionaries of China, held at Shanghai, May 7-20, 1890, pp. 291-302. Shanghai: American Presbyterian Mission Press.
Detailed essay with special attention to activities and reading systems for blind people.
HINDER, Eleanor M (1942) Social and Industrial Problems of Shanghai. New York: Institute of Pacific Relations.
pp. 60-70 concern ‘Child Protection’ (particularly of ‘girl slaves’), and ‘Special Social Problems’ including those of disabled beggars.
HSU KL & CHU FT (1930) Statistics concerning births and deaths in the children of 2,168 Chinese families. Natl Med. J. China 16: 744-55.
Totals data from 903 families reported in a previous study (1927) and a fresh 1265 families seen at Peiping Union Med. College Hospital, recording miscarriages, births and deaths, infant mortality, and causes of death, with discussion. Death cause was categorised as “Congenital debility, malformation, and injuries at birth (including undiagnosed deaths under 1 month)” in 155 cases, i.e. 11.9% among 1733 deaths.
HSÜ I-T’ANG (1956) Social relief during the Sung dynasty. In: E-tu Zen Sun & J de Francis (eds & transl.) Chinese Social History, 207-215. Washington DC: American Cncl of Learned Societies.
Discusses the normal relief measures (i.e. not those temporarily used after catastrophes), during the Sung [Song] dynasty, 960-1279 CE, noting the various agencies involved, relief lodging homes, medical relief clinics and public cemeteries.
JAPAN. Min. Welfare. Collection of Laws Under the Jurisdiction of the Ministry of Welfare, Japanese Government December 1, 1951. Tokyo. 383 pp.
pp. 21-25, Eugenic Protection Law (No. 156 of 13 July 1948), meant to prevent the increase of “inferior descendants” by removing certain people’s reproductive capacity. pp. 25-34, Mental Hygiene Law (No. 123 of 1 May 1950), for management of “psychopaths” and “feeble-minded persons”. pp. 129-32, Law for the Masseurs, Acupuncturists, Moxa-Cauterists and Judo-Orthopaedists (No. 217 of 20 Dec. 1947), for licensing and control of these professions. pp. 220-29, Law for Welfare of Disabled Persons (Law No. 283 of 26 Dec. 1949), establishing definitions, Cncl for Welfare of Disabled Persons, measures for relief, welfare and rehabilitation, and some amendments. pp. 230-31, establishment of national institutions for blind and disabled people. pp. 260-73, Child Welfare Law (No. 164 of 12 Dec. 1947) including some provisions for welfare of disabled children.
JONES, William C, with TIANQUAN CHENG & YONGLING JIANG (transl.) (1994) The Great Qing Code. Oxford: Clarendon.
The legal code of China’s Qing dynasty (1644-1911) gave lighter penalties to people “seriously disabled (such as those who are blind in one eye or who have one limb disabled)” or who were “critically disabled (as one who is blind in both eyes or who has two limbs that are disabled)” (p. 52), or sometimes to carers. The categories recurred in various situations, e.g. severe beating instead of imprisonment when a convicted person was solely responsible for caring for elderly or disabled relatives (p. 49); reduction of penalty for one who became seriously disabled during imprisonment (p. 53); beating for household head claiming exemption from compulsory service by pretence that a family member was seriously disabled (p. 104); beating for government official failing to provide support for critically or seriously disabled person having no family to provide for them (p.112). They recurred in laws of injury, including “maiming or serious disability” (pp. 276-77), and a variety of other specified injuries. Where critical disability resulted, the convicted person was punished and was also liable to compensate the injured one. (pp. 285-89). See also pp. 64, 104, 182, 202, 237, 305, 369. Disabled people were often grouped with children or the elderly for lighter penalties or exemption (e.g. being spared the normal torture during an investigation, p. 376).
JAPAN CHURCH WORLD SERVICE (1958) Welfare Work for the Physically Handicapped in Japan. Tokyo. v + 98 pp.
KERR, John G (1889) A Chinese benevolent association, China Med. Missionary J. 3 (4) 152-55.
Data and activities of Oi Yuk Tong, the Native Dispensary of Canton. Kerr, who had great trouble raising funds to start his mental asylum, was impressed by the financial acumen of the Chinese managers.
KIM, Eunjung (2006) History of disability: Korea. In: GL Albrecht et al (eds) Encyclopedia of Disability, II: 858-64. Thousand Oaks, Ca.: Sage.
Brief review of nearly 2000 years of Korean history and folklore in which disabled people find some mention, with early suggestion of charitable support to those living in poverty, exemptions from onerous tasks, healing activities, or sometimes negative attitudes. Formal service provision in South Korea is described in more detail for the past 50 years.
KYEONG-HEE CHOI (2001) Impaired body as colonial trope: Kang Kyong’ae’s “Underground Village”. Public Culture 13: 431-58.
After surveying stories with prominent disabled characters in 20th century Korean literature from over 30 writers, and noting some changes in disability terminologies, the paper focuses on Kang Kyong’ae’s novella “Underground Village” (1936, 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.
LAMSON, Herbert D (1935) Social Pathology in China. A source book for the study of problems of livelihood, health, and the family. Shanghai: Commercial Press. xviii + 607 pp.
Professor of sociology, Univ. Shanghai, discussing leprosy (pp. 297-325); ‘mental deficiency’ in China with some case histories, but with European / American conceptualisation (pp. 379-97); mental disease, pp. 408-41.
LEUNG, Angela Ki Che (1985) L’accueil des enfants abandonnés dans la Chine du bas-Yangzi aux XVIIe et XVIIIe siècles, Etudes chinoises 4 (1) 15-54.
Substantial treatment of Chinese 17th and 18th century infant abandonment and infanticide based on numerous local sources, starting with welfare measures from the 12th & 13th century. Leung suggests possible reasons for the rise, decline and renewal of welfare efforts, in particular the orphanages, and briefly compares the less competent measures in France at various periods. Many of the later Chinese services were funded by non-government philanthropists. Periodically it occurred to some members of the educated classes not merely to prevent mothers dumping their babies, or to provide a rescue service, but to take measures to avoid the poverty and fear of famine that resulted in abandonment.
LEUNG AK (1995) Relief institutions for children in Nineteenth-Century China. In: AB Kinney (ed) Chinese Views of Childhood, 251-78. Honolulu: Univ. Hawaii Press.
Following earlier services (see Leung, 1985), the 19th century efforts made greater provision for foundlings’ and orphans’ health, adoption or sponsorship, education and well-being. “Merely collecting sick or moribund infants for institutional treatment was no longer enough.” (p. 264) The needy child began to emerge as “a more complex but real social being”, as part of a response to the increasing pressures for change in late Qing society. More thought was given to equipping children for the future, by vocational training, with special consideration for those with greater disadvantage, e.g. female or disabled. “Blind boys would usually be taught fortune-telling. Those who were too handicapped to learn anything or to get married would be transferred to hospices for adults, or to religious institutions, when they came of age.” (pp. 265, 267)
LILJESTRAND SH (1933-34) A survey of endemic goitre with special reference to the Gold Rivers district in the Chino-Tibetan border marches, J. West China Border Research Socy 6: 197-207.
Notes villages with 100% goitrous populations in Shansi Hills, and goitre belt through to the Himalayas, with implications of cretinism and other adverse effects. Maps and data tables are shown from the survey area, where standard diets were very deficient.
LINCK, Gudula (1995) Befähigung anderer Art? Zur Lebenswelt köperlich Behinderten in China. Pfaffenweiler: Centaurus-Verlagsgesellschaft. (English summaries, pp. 190-99)
Historical section discusses patterns of Chinese social responses to disability, with some acceptance and tolerance by the educated classes and rather more aversion and ridicule among the masses. Notes the paucity of Chinese historical materials dedicated to disability topics. Nevertheless, in the second section, on disabled people in China c.1989, respondents did recall some historical figures with disabilities.
LITTLE, Alicia HN (1899) Intimate China. The Chinese as I have seen them. London: Hutchinson.
pp. 134-63 describe foot-binding and consequent deaths, deformities and disabilities, and some psychological effects of young girls being thus mutilated by older women, based on personal observation and enquiries among medical and orphanage staff. Notes on people and organisations active against foot-binding.
MACGOWAN J (1909) Lights and Shadows of Chinese Life. Shanghai: North China Daily News & Herald.
Ch. 14 on “Doctors and Doctoring” gives historical anecdotes and some observation of Chinese physicians. Ch. 22 on “Beggars” is also anecdotal, but records some detailed observations of beggars with disabilities, among the many poor people.
MACKENZIE, Sir Clutha & FLOWERS WS  Blindness in China. Report to the Government of China. [Nanking?]: British Red Cross, for Min. Social Affairs.
Extensive review by an experience blind consultant and his colleague. Brief on antiquity (pp. 11-12). Notes on blind people’s jobs, activities and situations (20-35). History of services from c.1850 (pp. 62-65). Data on institutions (pp. 134-39).
MILNE, William C (1857) Life in China. London: Routledge.
Detailed description and commentary on urban foundling hospitals, leper and blind asylums, almsgiving and benevolent societies, under Chinese government or private auspices (pp. 47-72). Milne wrote partly to rebut the false notion, common in Britain, that Chinese people lacked compassionate concern for poor and needy people (46-47).
MIYOSHI, Taizo (1909) Philanthropy in Japan. In: S Okuma (ed) Fifty Years of New Japan (Kaikoku Gojunen Shi), 101-112. (English version, ed. MB Huish). London: Smith, Elder.
Historical overview, taking in charity granaries, tax exemptions, Buddhist temple asylums, hospitals, orphanages and poorhouses, with some dating. In times of scarcity, “provisions, clothing and medicine were granted to the helpless, sick and disabled”, from the first millennium CE. Special practices arose for blind people (p. 105). Suggestions are made about the philosophies and strategies of charitable activity and poor laws. More detail appears from the second half of the 19th century, of institutional services for people with leprosy and mental illnesses, and education for blind or deaf children.
MORA, A Damas & SOARES JC (1936) Leprosy in Macao, Chinese Med. J. 50: 721-25.
On a hospice for care and support of leprosy sufferers, established by the Portuguese in 1569 in line with a practice in their other colonies, and subsequent developments.
NAVON, Liora (1998) Beggars, metaphors, and stigma: a missing link in the social history of leprosy. Soc. Hist. Med. 11: 89-105.
Study of the range and ambiguity in historical and current public attitudes toward leprosy in Thailand, suggesting that before effective medical treatment was available, Buddhist teaching on karma could support stigmatising views, since leprosy was believed to result from sins in an earlier life; yet Buddhist belief also supported an actively compassionate response, by which believers would acquire merit. The first of these responses caused many people having the earlier stages of leprosy to disguise their condition or be concealed by their families. Over time, this led to the public seeing only people begging with severe leprosy deformities, profiting from the second kind of response, i.e. the charitable impulse. Some time after modern drug treatment became available, people with severe deformities were a rare sight, yet a strong folk memory of the repulsive beggar continued to reinforce negative attitudes in the rising generation.
PARKER, Mrs (1882) Chinese charities. Women’s Work in China 5 (2) 119-22.
Visits to an almshouse for c. 200 elderly or disabled women, and a home where 150 widows, with maybe 300 children, were supported by wealthy families, at Soochow. These were in good shape; but the Foundlings Hospital was a damp, depressing place of “little beside misery, poverty and dirt”, with twenty children, mostly “blind, deformed or idiotic”.
REHABILITATION of Disabled Soldiers in China, Intl Labour Review 44 (1941): 222-23.
Brief note about cottage industries and self-help activities at a training institute established by the Disabled Soldiers’ Vocational Association.
REHABILITATION of the Disabled in China, Intl Labour Review 57 (1948): 503.
Note from Social Affairs Min. on a rehab. institute opened at Nanking for disabled men.
SCOGIN H (1978) Poor relief in Northern Sung China, Oriens extremus 25: 30-46.
Outlines background of 11th century relief and growth of poor-houses, with political and social debates, then cutbacks in the 12th century. (Disabled people were among those who were poor, sick, aged or ‘unable to care for themselves’, though disability is not specifically mentioned).
SIGMA (1895) The Amma, Japan Evangelist 2 (No. 6, August): 357-58 (and plate opposite p. 356)
Brief item describes the whistle signalling the blind amma’s approach, his physical appearance, the hour-long head to toe massage, and the systematic organisation of the blind guild (until reforms in 1870), with its 72 different grades of certificated competence. The full page photo shows an amma with shaven head, holding a bamboo stick, blowing his whistle, wearing thong clogs and a loose-fitting gown, with towel tucked at waist.
SMITH, Nicol (1940) Burma Road. London: Gollancz. 319 pp + photos.
Travel across south western China into Burma. Sentimental account of School for Blind Girls at Kunming, run by German Sisters of Charity (pp. 183-200). Also head-flattening (35); leprosy colony near Pakhoi (52-59); severely abused and disabled children working in mines of Kochiu (158-62); severe goitre (246).
SWINEHART, Mrs ML (1933) Some Korean cameos. The story of Yi Pok Dong. Korea Mission Field 29: 150-51; also 30: 61.
Sentimentalised tales of beggar boys with serious physical disabilities who entered the Salvation Army Boy’s Home, Seoul, and received care and education. Second item refers to “The half footed beggar boy”.
SYLE, Edward W (1847-1858) [Extracts from the Journal of the Rev. E.W. Syle] Spirit of Missions, 12 (1847): 353; 13 (1848): 186; 14 (1849): 343-45; 15 (1850): 185-86, 357, 426-27; 16 (1851): 22-23, 75, 82, 134-35; 17 (1852): 57, 204, 305-306, 450-51; 18 (1853): 56, 82; 206; 22 (1857): 35, 278; 386-87, 440-41; 23 (1858) 196-97, 338-39, 484.
Journal extracts in this missionary magazine over 12 years often referred to disabled people. In 1856 Syle, whose son was deaf, started a school and workshop for blind people. On 24 Mar 1852, [17: 305}, he noted an elderly blind Chinese, a writer in the official Grain Dept for 42 years, who then lost his sight. Being now “a man half living and half dead”, the old man explained, “I have no way of getting my living. If I had been an old servant in a merchant’s house he would have fed me in my blindness and old age; but the mandarins are always changing about, and know nothing more of the men that serve them than that they do their work and get their wages.”
TEXTS of Confucianism, part III, The Li Ki (Royal Regulations) I - X (1885) transl. J Legge, SBE vol.27. London, Oxford UP
Probably collected in 2nd century BC. Care of disabled people, e.g. “In cases of parties who were disabled or ill, and where the attendance of others was required to wait upon them, one man was discharged for those duties” ... “The dumb, the deaf, the lame, such as had lost a member, pygmies, and mechanics, [?] were all fed according to what work they were able to do.” Bk.III [v], (pp. 243-44). “Blind musicians and their helpers” Bk. VII [iv], (p. 385), Arrangements were made “for assisting and guiding the steps of the (blind) musicians, showing the extreme degree of kindly (provision)” Bk. VIII [ii], (p. 407).
TSU YY (1912) The spirit of Chinese philanthropy: a study in mutual aid. New York: Columbia Univ. 122 pp.
TSU YY (1917) Native charities of Shanghai. In: EC Lobenstine (ed) The China Mission Year Book 1917, 503-519. Shanghai: Christian Literature Socy of China.
The legal basis, origins, location, funds, administration and functioning of a variety of Chinese charitable organisations, the earliest founded c. 1710.
TWITCHETT D (1970) Financial Administration under the T’ang Dynasty. 2nd edn. Cambridge UP.
Discussing land grants in China in the 8th century CE, pp. 3-4, “Old men of over 60 years of age and disabled persons were entitled to 40 mou” (about 5 acres of land). This was less than half the grant to able-bodied men aged 18 to 60, but the elderly or disabled grantees were exempt from taxation. Note 21 (p. 212) gives the administrative listing that distinguishes “partial”, “serious” and “total” degrees of disability.
UNITED CHINA RELIEF SERIES. (Pamphlet series, 1941- .) Chunking: China Publishing Co.
Pamphlets supporting China’s welfare and relief efforts in wartime. Some disability and childhood contents, e.g. No.5 (3) Helping the blind soldiers!; No.12 (3) Child welfare work lacks funds; No.18 (4) Anchorage for refugee children.
WIEST, Jean-Paul (1988) Maryknoll in China. A history, 1918-1955. Armonk NY: Sharpe.
pp. 131-201 concern Maryknoll missionaries’ “Corporal Works of Mercy”, including work with orphan children (some of whom were disabled, pp. 141-42) and colonies for leprosy sufferers.
WONG, Linda (1998) Marginalization and Social Welfare in China. London: LSE/Routledge.
Chapter 2 (pp. 24-42) discusses “The culture of welfare - the pre-revolutionary legacy”, noting traditional values, mutual obligations and institutional provisions, with some mention of disabled people among those needing assistance. Extensive bibliography of works in English (pp. 215-30).
YOUNGHAK, Hyun (1985) The cripple’s dance and Minjung theology. Ching Feng 28 (1) 30-35.
The Korean Christian theologian Younghak notes his changing perception of crippled beggars. He first saw them as a boy, and enjoyed watching their begging song and dance, which was also an event for mimicking and teasing. He tells of a talented dancer, Ms Kong Ok-Jin, who performed a ‘cripple’s dance’. She grew up in a very poor family, her brother was deaf, and she had learnt to communicate with gesture and mime. She worked as a maid for a Korean dancer, and later worked in a troupe of singers and dancers. Her speciality was to depict “both the pain and the joy of the poor, powerless, estranged and uneducated people as she experienced in her personal life and observed in others.” Once, going home after a performance, she was beaten by a group of crippled beggars, who felt that her art made fun of their plight. Later, she ran a small restaurant, and used to invite crippled beggars, give them food and drink, and “dance with them in order to learn the minutest details of their body movements.” By close attention, entering into the beggars’ world, Ok-Jin finally learnt how to make an audience feel the reality of pain and misery in the dance of the crippled beggars or lepers, and also the spark of joy with which they claimed their common humanity and challenged ‘normal’ people. Her performance finally became acceptable to the beggars.
ABBAS KHAN [c.1580] Tarikhi Sher Shahi. In: HM Elliot & J Dowson (eds) (1867-1877) The History of India as told by its own historians. The Muhammadan period, vol. IV, reprinted 1976 & 1979, Lahore: Islamic Book Service.
pp. 423, 549. Under the administration of the Afghan Sher Shah Suri (c. 1472-1545), whose brief rule in the 1540s extended from Eastern Bengal to Western Punjab, it was reported that “Destitute people, who were unable to provide for their own subsistence, like the blind, the old, the weak in body, widows, the sick, etc, to such he gave stipends from the treasury of the town in which they were resident, and giving them the expenses of their journey sent them away.” (The flaw in this system seems to have been that the indigent or blind person needed to gain Sher Shah Suri’s ear in person, for a stipend order to be issued to the local town treasury. Had Sher Shah lived longer and consolidated his rule, his undoubted administrative gifts, energy and perseverance could well have devised a more durable, effective, decentralised system.)
ACTON, Hugh W (1922) An investigation into the causation of lathyrism in man. Indian Med. Gazette 57: 241-47.
Major Acton went upcountry to examine 204 people crippled by lathyrism, who had found work breaking limestone for a kiln. He estimated that there were 60,000 people with lathyrism in North Rewah alone, many of whom “migrate to the larger cities, Patna, Benares, Bombay and Calcutta, and form a large percentage of the beggar population.” A hard-boiled military pathologist, Acton nonetheless found that “The helplessness of these poor people is pitiable: on questioning one of them why he persisted in eating kesari dal when he knew it was bad for him, he replied, ‘Sahib, one has to eat to live, even though the dal is poisonous and produces paralysis’.” Acton’s knew that careful soaking of the grain would remove the toxin. “Yet when we are dealing with a half starved, illiterate population who are forced by circumstances to live on a partial or exclusive diet of this vetch [i.e. lathyrus sativus], the soaking of the grain, even if it were carried out, would interfere with the making of flour. The solution is therefore a sociological one”. It required the abolition of the rural debt-slavery that reduced workers to accepting risky food in lieu of wages, the “control of food prices and relief during famine years”, and mobilisation of other resources. (A ban on growing the crop had been tried, but was impossible to enforce).
BAILEY, Wellesley Crosby  A Glimpse at the Indian Mission-Field and Leper Asylums in 1886-87. London: Shaw. 188 pp.
While visiting many ‘leper asylums’, Bailey also made notes on other disabled people whom he met in India. While primarily interested in Christian missionary work among people with leprosy, Bailey visited and reported appreciatively on leprosy asylums and charitable work started by Parsi philanthropists, and by the Muslim ruler of Oude.
BARANI, Ziauddin [later 14th century] Tarikh-i Firoz Shahi. In: HM Elliot & J Dowson (eds) (1867-1877) The History of India as told by its own historians. The Muhammadan period, vol. III, reprinted 1976 & 1979, Lahore: Islamic Book Service.
pp. 107-108. Sultan Balban (regn. 1266-1287), while restoring the economy of Lahore and region, learnt that some old military grantees of land “were unfit for service, and never went out”, so he ordered reforms. (Decades earlier these veterans had received land as an income, in return for continuing military service when required; but such service had virtually lapsed as they were “old and infirm”, some had died, others were sending bribes etc). The plans were not ungenerous -- but those concerned feared the worst and sent a senior official to plead for them. This man took the line that he too was “an old man and feeble, and if old men are to be rejected in the Day of Judgement, and are to find no place in heaven, what will become of me?” The reform was duly revoked, and this early Islamic example of an ‘elderly and disabled veterans pension’ continued.
BARTHOLOMEUSZ, Frank (1943) The story of Hendala. J. Dutch Burgher Union of Ceylon 32 (4) 129-33, & 33 (1) 22-25.
History of the Leprosy Hospital, since the early 1700s.
BUCHANAN, Francis (1810 / 1928) An Account of the District of Purnea in 1809-10. Manuscript published at Patna: Bihar and Orissa Research Socy.
During his Indian survey work, Buchanan noted that “The number of common beggars that were estimated to be in the whole district amounts to 7410, of which by far the greater part are real objects of charity ... So long as they are able to go about, they are in general supplied with a sufficient quantity of food, and are commonly allowed to sleep in some out-house, provided they have no hut of their own. ... Besides there are many lame, blind, or other infirm persons belonging to poor families, that cannot give them food but who give them accommodation and such assistance as is within their power, especially in sickness. In a few places it was stated that the people were in general very kind to them, and allowed none to perish from absolute want of care, nor in their last moments to want the common attentions of humanity; but in most parts of the district the notions of caste produce a great hardness of heart, and it was stated that whenever a beggar was unable to move from his hut, he was totally neglected by his neighbours, or that when a wretch fell down no longer able to travel, there he lay until he perished.” (p. 165)
GANGULY, Birendra Nath (1927-28) The street-beggars of Calcutta: a study of the problem and its solution. Indian J. Economics 8: 373-86.
Ganguly, an economist writing c.1927, lamented the government’s neglect of its “sacred trust” -- by which apparently he did not mean doling out alms to the needy, but protecting decent people by chivvying away professional beggars (p.376), especially the “able-bodied vagrants” (p.374) and the “well-fed, pestering rogue” (p.375). He also lamented the disappearance of “institutions for feeding the poor, such as Dharmasalas and Atithisalas, which used to be established by the benevolent rich some two decades ago” (p.374). He denounced the absence of institutions for “specimens of degenerate humanity suffering from loathsome and contagious diseases - the lepers, the insane, the idiotic, the feeble-minded -- men of abnormal deformities of body and mind”, who were clogging up the main streets of every city (pp. 373-74, 378-79). The Government had merely “tinkered with this problem with an antiquated legislation administered in a slipshod and spasmodic manner.” Any arrest or imprisonment of beggars brought an obligation to feed them and provide basic care; but the facilities to do so were quite inadequate for the large numbers on the streets, and in any case the beggars might welcome a period of board and lodging at the public expense.
GHOSAL, Raja Kali Shankar (1824) A Scheme of Charitable Contribution. (Manuscript. Forwarded to the government at Benares, by William Fraser, on 13 January 1824) India Office: Boards Collections Vol. F/4/955 Section 27109-27118.
Raja Kali Shanker Ghosal proposed a scheme to open an Asylum for indigent blind people, after having a survey made of their numbers and desperate condition. “On my arrival at Benares I experienced many Blind men to labour under an extreme distress for want of food and raiment, which can no other way be made than by beggary; and for which purpose, their circuitous walk tho’ ever so troublesome through the narrow streets of the city appeared every year to subject some of them to fatal consequence, although it is not in my power alone to aleviate [sic] the pains of those poor, yet moved by pity to their helpless condition, all I can do to serve them, is by calling for the indulgence of humane and liberal men whose kind assistance on the occasion will it is hoped forward the scheme to successful conclusion and of course rewarded by the love of God.
At present 225 Blind men, of every cast are estimated to consist in the City of which 100 appear to be born Blind and 125 to have lost their sight by casualties, among the number 50 are supposed to be curable. the Expenses to be incurred in purchasing a spot of ground and erecting a House thereupon for the comfortable accommodation of these Blind men are conjectured at 10,000 Rupees. Expenditure: Repairs of the House per month, 10. Their diet, at 3 Rupees each, 675. Servants wages pr. month, 30. [Total] Rupees pr. month: 715.
Of the amount I beg leave to offer on my own part 200 Rupees pr. mensem, besides the sum above mentioned for ground and building which I also engage to tender. The sum then remains to be raised by charitable contributions is only 515, to aid the institution, therefore it is humbly requested that the agent of the Governor General at Benares will if the plan is approveable to him, be pleased to convene a meeting at his house of the Gentlemen and wealthy natives of this place for the above purpose[;] should the subscriptions which they are pleased to make be still left insufficient to make up. Mr Brook will be good enough to procure the deficiency from Government which from various examples of its liberality to the poor in general, I am encouraged to hope will not be deemed as matter of objection for a compliance.”
[After some debate, e.g. about whether an Asylum would attract crowds of disabled poor from across the country, the scheme was officially approved in August 1825, with government grant of premises and building maintenance costs. The Asylum opened on 1 Jan. 1826, and ran successfully for at least 50 years, probably much longer, catering for blind people and also those with leprosy. Various light industrial activities were undertaken by residents capable of doing so, and some learnt to read.]
HAHN, Rev. F. (1890) The leper question in India. Harvest Field, 3rd series, I: 241-46.
Apart from discussing leprosy issues and his asylum at Lohardagga, Chota Nagpur, Rev. Hahn (of Gossner’s Evangelical Lutheran Mission) wrote that in 1886 he established an asylum “for epileptics, syphilitics, and all kinds of people suffering from loathsome and incurable diseases. Only such patients are admitted as have no one to care for them. Most have been picked up in the streets or country roads, and very few have been able to walk there unassisted” (pp. 242-43). This seems to be one of the earliest welfare activities in India welcoming people with epilepsy, a condition still provoking adverse public reactions.
HAYNES DE (1987) From tribute to philanthropy: the politics of gift giving in a Western Indian city. J. Asian Studies 46: 339-60.
Shows evidence across 300 years from Surat, where Hindu and Jaina merchants added new charitable objects to the ‘portfolio of philanthropy’ with which they maintained their social and business status, without dropping traditional good causes. Haynes suggests that the merchants remained deeply conservative in their behaviour, and were far from adopting British ideas, though for strategic reasons they might give an appearance of doing so. Thus “it was often the individuals who were most prominent in spending money for purposes the British regarded as wasteful who were in the forefront of the charitable causes the British most fervently espoused. The greater the sheth, the greater the diversity in his portfolio of charitable activity.”
[+] ILCHMAN WF, KATZ SN & QUEEN EL (eds) (1998) Philanthropy in the World’s Traditions. Bloomington: Indiana UP.
Collection of well-referenced chapters presents motives and practices of philanthropy in various religious traditions, e.g. L Anderson on philanthropy in South Asia (pp. 57-78); AWP Guruge & GD Bond on Theravada Buddhism (79-96); LS Kawamura on Mahayana Buddhism (97-106); M Juergensmeyer & DM McMahon on Hindu philanthropy (263-78). Little directly on disability, but the more positive social attitudes are implicit in philanthropic practices.
INDIA. Census of India, 1901. Vol. I, Part I. Report, (by HH Risley, EA Gait). Calcutta, Govt of India. 1903.
Chapter IV (pp. 131-) discusses “Infirmities”, with summarised tables of data, and comparison with early censuses. After several decades of British census questions on people who were “Insane, Deaf-Mute, Blind, Leper”, and similar in British India in 1881 and 1891, the many problems of obtaining and interpreting such data were fairly well understood. (When South Asian nations resumed counting disabled people in the 1980s, after a 50 year gap, the earlier experience was ignored, so 20 years were spent learning similar lessons). The 1901 data showed substantially fewer disabled people than earlier. Risley & Gait thought that, “The majority of the persons suffering from infirmities dealt with at the census belong to the lowest grades of society, and many of them subsist by begging. When the stress of famine comes, the springs of private benevolence dry up. Every effort is made by Government to supply food to all who, like most of those whose infirmities are recorded at the census, are incapable of earning their living, but these are all people the most difficult to find and relieve. Even in ordinary years the alms they receive are often barely sufficient to keep body and soul together, and they are at the best of times of inferior physique, so that they are less fitted than their neighbours to resist the strain which famine throws upon them.” (p. 132).
INSTITUTES of Vishnu, The (1880) transl. J Jolly, SBE 7. Oxford: Clarendon.
Early compilation of law, having much in common with Manu’s law code, with growth and accretions from commentaries over time. The king had a duty to appoint “pious persons for performing acts of piety (such as bestowing gifts on the indigent, and the like)” (p. 15) [[Bk III: 17]; and to “protect the property of minors, of (blind, lame or other) helpless persons (who have no guide), and of women (without a guardian)” (p. 20) [III: 65]. Inheritance law provided that, “Outcasts, eunuchs, persons incurably diseased, or deficient (in organs of sense or actions, such as blind, deaf, dumb, or insane persons, or lepers) do not receive a share. They should be maintained by those who take the inheritance. And their legitimate sons receive a share”, (p. 64) [XV: 28-34]. (By this law, people with disabilities, and their heritors, were not cut off from the benefit of extended family properties, but were relieved from the duty of managing it as long as they lacked capacity to do so).
JAIN, Padam Sain (1916) A preliminary note on pauperism in India. Indian J. Economics, 1: 351-68.
Jain, a Reader in Economics at Allahabad, gave a dispassionate view of pauperism, defining terms with care and taking only the mildest swipe at the inability of (British) government officers “to realise properly the wants of the lowest classes of society”. He noted “the poor sick or permanently broken down adult who would not be destitute but for his sickness or infirmity ... the aged and the infirm with no one to look after them” as well as “admittedly a very large number of persons in this country who cannot get even a square meal every day, and whose health and strength are therefore continuously failing, but who would laugh to scorn the idea of receiving charity.” Jain defined the minimum “necessaries of life”, and noted that at the King’s Poor House, Lucknow, “for the relief of the poor, the blind, the lame, the maimed and infirm from old age” an average of just under 40 rupees per capita was expended. His main point was that almsgiving in India was “proverbially indiscriminate”, which favoured the able-bodied, plausible rogue, who could move about fleecing the kind-hearted, as against the “poor lame old man”, who is fixed at one spot and “often fails to secure for days at a stretch even a single morsel of food between his teeth.” Jain called for the matter to be studied further...
The JATAKA, or Stories of the Buddha’s former births (1895-1907). EB Cowell (ed), several translators. Cambridge UP, originally 6 vols, 2,057 pp. Reprinted 1993, two vols, Delhi: Low Price Publications.
Many stories involve ordinary lives in considerable poverty, some with disability, probably from the 3rd century BC. See e.g. numbers: 41, Losaka-J (street child, abandoned, begging, but forever starving); 107, Salittaka-J (cripple who was expert at throwing stones); 193, Culla-Paduma-J (maimed and helpless robber cared for by an adulteress who begs their bread); 202 Keli-Sila-J (wanton cruelty to the elderly and decrepit, finally punished); 340, Visaya-J (great philanthropist, after losing his wealth, took up common labour so he could continue giving alms); 346, Kesava-J (psychology in healing: a bowl of soup given with love is better than a banquet given impersonally); 424, Aditta-J (alms to the deserving poor or to the undeserving?); 516, Mahakapi-J (pitiful person with leprosy, shunned by all; one of the earliest detailed pictures of leprosy symptoms); 519, Sambula-J (leprosy-stricken prince, whose wife followed him to the forest to care for him, repays her badly when his fortunes turn).
KHAFI KHAN. The Muntakhab Al-Lubab, II: 556-59, Bibliotheca Indica, Calcutta. [Relevant passage is given in English by M Mujeeb (1967) The Indian Muslims, London: Allen & Unwin, p. 67.]
The 17th century sufi Mir Nasiruddin Harawi (died 1708) lived most of his life with paralysis of both legs and left arm. With his one good hand he was able to support himself very modestly by writing copies of the Qur’an. Nasiruddin was an influential teacher, independent thinker, and fearless critic of men who exercised power unjustly and trampled on the weak.
MAMORIA CB (1981) Social Problems and Social Disorganisation in India. Allahabad: Kitab Mahal. xxi + 1276 pp.
Large, rambling tome from an earlier generation, packed full of dubious and undigested data, tables, pie charts, on a wide range of social problems, still in use as a textbook in the 1980s. Chapter on the “Quality of Population” (pp. 425-55) has section on e.g. “Deaf-muteness”, “Crippled children”, “Insanity”, “Leper”. Mamoria showed no diffidence about advocating “eugenic measures” to control the fertility of the “feeble-minded”, in order to “maintain the purity of the racial stock” (pp. 441, 450-51.) In a detailed review of beggary and means to eradicate it, Mamoria (pp. 695-716) believed that an increasing number “depend for their food and succour on dharamshalas, chowltris, maqbaras, and gurdwaras that still continue to dispense alms and food.” (p.705) Reports of the demise of such facilities (e.g. by Ganguli, q.v., 50 years earlier) had been premature. Many beggars have some disability, chronic ailment, addiction or mental illness.
MEERSMAN, Achille (1971) Notes on the charitable institutions the Portuguese established in India. Indian Church Hist. Review 5 (2) 95-105.
Among 16th century hospitals founded in the State of Goa, one existed at Cochin by 1506. One for lepers began 1530-1531. There was a regular disbursement to ‘paralytics’ [entreuados] in 1574 at Damaun. Meersman notes that apart from Goa, the Misericordia existed “in the other major Portuguese centres, such as Bassein, Bengal, Cannanore, Chaul, Cochin, Damaun, Diu, Mahim, Mangalore, Negapatnam, Onor, Thana, S. Thomé (Mylapore) and Tarapor”. [For detail: JF Ferreira Martins (1910-1914) História da Misericordia de Goa, 1520-1910, Nova Goa; but this work is not widely available.] See also RUSSELL-WOOD.
METCALFE, Rachel (1888) Sketch of the Orphan Home Hoshangabad. Indore: Canadian Mission Press. [34 pp.]
Gives short sketches (pp. 15-34) of orphan children with whom Rachel Metcalfe lived and worked since 1881. At least six were substantially disabled. Metcalfe herself was severely disabled with rheumatism, using a wheelchair. The orphans’ educational programme was simple and domestic.
MILES M (1996) Pakistan’s microcephalic chuas of Shah Daulah: cursed, clamped or cherished? Hist. Psychiatry 7: 571-89.
Children and adults with microcephaly have been collected and maintained at the shrine of Shah Daulah (d. 1676) on the edge of Gujrat city (Pakistan) as recorded from the 1850s and probably many years earlier. They were known as Chuas (also Chuahs, Chuhas, Chuvas, Chuwas, etc), meaning rats, from the supposed shape of their heads. Their presence at the shrine probably generated income by attracting pilgrims. The practice also arose of hiring out Chuas to ‘keepers’ for itinerant begging in the Punjab. Allegations that Chuas’ heads were deliberately deformed by metal caps were always denied by the shrine custodians. The British Indian government repeatedly investigated, but found no evidence. As the cranial condition of microcephaly became more familiar during the 20th century, the need for an artificial deformation hypothesis diminished. Yet it is still regularly repeated, probably by confusion with the documented cosmetic practice of shaping infants’ heads with manual pressure and by binding clay bowls on them. Most Chuas have some mental disability and communication difficulty, making them more vulnerable to abuses. However, the British psychiatrist Colonel Ewens inspected a dozen Chuas at the shrine in 1902 and reported that they were cared for as well there as they would have been at his own government mental hospital, a remarkable published testimony to the humanitarian nature of the shrine community.
The shrine was taken under government control in 1969, to stop any abusive practice. Yet Chuas still roam about Gujrat District and further afield, begging in public places and at railway and bus stations, with a keeper or minder. Several reports are on websites, sensationalised with wild allegations and invented details. The Chuas’ lives of poverty, and the itinerant begging custom, can indeed be considered an abuse now; yet those hiring a Chua for this purpose have an obvious financial interest in keeping their Chua alive and well. Itinerant begging by chuas, observed by the present annotator in the 1980s and up to 1993, was confirmed as an ongoing practice from personal observation by a European scientist visiting the Punjab in December 2005 while studying the genetics of microcephaly (personal communication from AM Leroi).
MILES M (ed) (1997) Disability Care and Education in 19th Century India. Some Dates, Places and Documentation, with Some Additional Material on Mental Retardation and Physical Disabilities up to 1947. Revised Version. May 1997. Birmingham, UK. 68 pp. ERIC ED408747.
Introduction and extensive excerpts from mainly 19th century government reports on schools, charitable dispensaries, asylums, gazetteers; from missionary and medical journals, and other sources; listed by date and place. Texts refer to welfare and educational work and observations concerned with disabled children and adults at 45 cities, towns and rural locations across South Asia. Most of the disabled people lived in serious poverty. Charitable, educational and vocational work was begun and sustained by Indian rulers, wealthy families, local and expatriate communities, and religious missions.
MILES M (1998) Goitre, cretinism & iodine in South Asia: historical perspectives on a continuing scourge. Med. Hist. 42 (1) 47-67.
[The full Med. Hist. archive is now open online. Enter author surname and title keywords in a NLM search: http://gateway.nlm.nih.gov/gw/cmd ]
Briefly traces the South Asian history of Iodine Deficiency Disorders, and iodine-based herbal and scientific remedies, from antiquity to the present. In particular, the hill and mountain population’s meagre diet remained too narrow to cover the iodine depletion of the environment and its crops; so one result has been a high level of IDD, with women having substantial goitres, many children with cretinism or deafness, and a long shadow of reduced intellectual functioning in millions more people. Iodine supplement programs were undertaken after decades of delay, and in a half-hearted way. [A point not brought out in this paper is that some of the Himalayan populations were probably the heirs of very poor people from earlier times, who had been pushed from fertile lowlands to settle in less productive areas, then further dislodged to inaccessible hill country with even poorer nutritional capacity, ending up on marginal land with water supply seriously deficient in micronutrients.]
MILES M (1999) Blindness in South & East Asia: using history to inform development. In: B Holzer et al (eds) Disability in Different Cultures. Reflections on local concepts, 88-101. Bielefeld: Transcript-verlag.
Brief studies on blindness and destitution in Bengali ballads, and of blind teachers and learners in China and India from the 1830s to 1880s, with some implications for modern planning.
MINOR Law-Books, Part 1. Narada. Brihaspati (1889) transl. J Jolly, SBE vol. 33. Oxford: Clarendon.
Brihaspati (probably 1st century CE.) Chapter 14 has recommendations for forming partnerships for trade or other business, suggesting avoidance of people who are lazy, incompetent or sick. In Ch. 17: 5-24, (Jolly’s transl. pp. 346-50), rules are suggested for villagers to form an organisation for mutual assistance and charitable purposes, e.g. “Relief to helpless or poor people, the performance of sacrificial acts, a common path, or defence” by mutual agreement (p. 348). Members should act correctly towards one another, sharing whatever benefits the individual has gained; “(Or) it shall be bestowed on the idiotic, the aged, the blind, to women or children to afflicted or diseased persons, to persons having issue, or the like (worthy persons).” (p. 349).
NATH, Vijay (1987) Dana: Gift system in Ancient India (c. 600 BC - c. AD 300). A socio-economic perspective. Delhi: Munshiram Manoharlal. [Dana should have bar over first ‘a’]
Based on a doctoral thesis, using early South Asian texts. In ch. 6, “Origins of Beggary”, there are many references to needy people with disabling diseases or conditions: cripples, the blind, the helpless, indigent and infirm, having a disease such as leprosy, being eaten alive with worms, those maimed in body, etc. The author has made efforts to avoid exaggerated claims. “At least during the Mauryan period a well organised system of poor relief seems to have existed. But whether it materially lessened the evils of beggary and thereby helped to reduce its burden on common householders cannot be well ascertained.” (p. 119)
PUMPHREY, Caroline W (1900) Samuel Baker of Hoshangabad. A sketch of Friends’ missions in India. London: Headley Bros.
Missionaries in India through the 19th century struggled to channel charitable funds to those in the greatest need. “The Friends at Sioni deal with the difficulties of how to avoid giving to the undeserving ... They give to beggars once a week only, on Sunday. On arriving home after the morning service, a crowd of halt and maimed and blind folks, principally women, and mostly old, are found sitting on the ground, patiently awaiting the arrival of the Mem-Sahib ... As only a fixed sum is given each month, and as this is known to the recipients, they themselves voluntarily arrange the matter of keeping out the undeserving. I pity the man who being able to work for his living sought a share of the weekly gifts; to raise the ire and start the tongues of the fifty old women I saw would be no trifling ordeal.” (p.109; quoting John Lampard of Balaghat).
RASHID SK (1978) Wakf Administration in India. New Delhi: Vikas.
The wakf is an Islamic legal practice intended to secure property in perpetuity as a trust for charitable purposes. Across India there was a great variety of wakf benevolence by wealthy Muslims, from the 12th century or earlier. Even if a considerable part may have been organised to protect family heritage, and the practice was undoubtedly abused, there were also substantial public benefits in the system and British administrators had some involvement from 1765 onwards. In this published doctoral thesis, Khalid Rashid documented the British administration’s swings from ‘caution followed by interference’, through ‘mistaken but intelligible non-interference, followed by gradual involvement’, to a period of increasing legislation (pp. 11-36).
RUSSELL-WOOD AJ (1968) Fidalgos and Philanthropists, London: MacMillan.
pp. 1-23, traces the origins of the Misericordia from 13th century Florence and onward from a Portguese beginning in Lisbon in 1498; and pp. 25-33 sketches the Indian Misericordia. The first ‘Holy House of Mercy’ (Santa Casa da Misericordia) in Asia was that established at Cochin in 1505. See also MEERSMAN, above.
SANYAL, Rajat (1977) Indian participation in organized charity in early Calcutta, 1818-1866: a response to the poverty question. Bengal Past and Present 96: 97-113.
Useful study based on early newspapers and other contemporary records.
SAULIÈRE A (1917) A missionary tour in Bengal in 1598. Bengal: Past & Present 14: 147-58.
The 1608 account translated by Saulière tells how two priests reached a small settlement at Hugli (c. 30 miles from present Calcutta) in 1598, and “from the moment they reached that place, their attention was chiefly drawn to the necessity of building a hospital. They saw the poor sick people, Christians as well as Gentiles, forsaken by all and expiring in the fields, where their corpses were torn to pieces and devoured by the wild beasts, which caused them great heart-rending.” They collected money, bought and furnished a house, brought in supplies and appointed stewards to administer them on a rota basis, and installed patients who were sick or dying without care.”
SMITH, William L (1979) The Pati-NindA in Medieval Bengali literature. J. American Oriental Socy 99: 105-109.
The Pati-NindA occur in early Bengali mangal poetry, often during descriptions of rural weddings. They consist of verbal abuse by married women, denouncing physical defects in their husbands, e.g. elephantiasis, blindness, scoliosis, lameness, sexual inadequacy, ugliness, lack of teeth; and bewailing their misfortune in having to live with such repulsive creatures. Economic poverty clearly did not preclude a richness of abusive rhetoric. Public recitation of Pati-nindA gave some relief from Hindu norms exhorting wives to treat their husbands as gods. Some examples are translated.
STRICKLAND CF (1939) Voluntary Effort and Social Welfare, in: E BLUNT (ed, reprinted 1946) Social Service in India. An introduction to some social and economic problems of the Indian people. London: His Majesty’s Stationery Office, pp. 372-98.
Useful historical review of the development of Indian voluntary welfare organisations, their effects and problems, pp. 380-398.
THAN AM (1970) Education of the deaf in Burma. Hearing (RNID) 25 (4) 108-111.
“Prior to 1885, when Burma was a kingdom, the welfare of handicapped people was a part of the monastic system of education. Buddhist monks looked after the handicapped children by providing food, and professional and vocational education (handicraft work, carpentry and clay work). The public contributed money, clothing, etc. for the needs of the monasteries.” (p.109)
WILSON, Dagmar C (1931) Osteomalacia (late rickets) studies. Part VII. Rickets among Indian children of school age. Indian J. Med. Research 18: 963-68.
Part of a series of studies of late rickets covering several thousand school-age children in northern India. Osteomalacia largely resulted from social factors such as sunlight deprivation through purdah, overcrowding and poor building design, and inadequate diet.
ASIK CELEBI. The Tale of Me’ali, Magistrate of Mihalic, transl. WG Andrews, in: K Silay (ed) An Anthology of Turkish Literature, 138-46. Bloomington, Indiana: Indiana Univ. Turkish Studies & Turkish Min. Culture.
Lewd and humorous 16th century Turkish tale of a magistrate overcome by lust for a lovely boy; interesting for its graphic depiction of the ghastly state of leprosy sufferers in a colony to which the magistrate is lured, who are tricked into believing that he is one of them.
AUBINEAU, Michel (1975) Zoticos de Constantinople nourricier des pauvres et serviteur des lépreux. Analecta Bollandia 93: 67-108.
This detailed, scholarly study on the martyred saint Zoticos gives a provenance of the sole manuscript (probably 11th C.) of his Vita; the available Greek text with French translation; points of philological interest and some detailed textual comparison between the Vita and a later source; and a discussion of the significance of the text in historical and hagiological context. The story begins in the time of Constantine (c. 274-337), whose reign reportedly had one blemish: a decree ordering the banishment and destruction of people with leprosy and those combatting the disease. Zoticos had been given responsibilities in the new capital at Byzantium, and enjoyed Constantine’s confidence. To by-pass the leprosy decree, Zoticos obtained gold to buy “precious stones” for the emperor’s benefit; but used the gold to ransom leprosy-disabled people who were being taken to their destruction, and to erect a camp where they were cared for. The scheme was denounced by courtiers when Constantine died and his son Constant[ius] (who favoured Arianism) took power; but Zoticos invited the new emperor to come and see the “precious stones”. Constant was greeted by a congregation of lepers, including his own daughter, who had been expelled under the decree but was rescued by Zoticos. Unamused by this ploy, Constant had Zoticos tied and dragged by wild mules until his body fell in pieces. Miraculous events followed. Constant repented of his error and founded the “Zoticos Hospital” to continue the saint’s work.
This foundation was destroyed and rebuilt several times over the centuries (according to Synaxarion, Dec. 30, it was rebuilt, after an earthquake, by Romanus III (1028-1034)). Historicity of the Zoticos vita cannot easily be substantiated, but he is mentioned independently in 472, as one who cared for orphans. A tradition of care for the poor, sick or suffering from leprosy continued to the time of the Emperor Michael IV (1034-41), when the extant manuscript originated. Michael IV himself suffered from epilepsy; and the Zoticos Vita ends with a celebration of this emperor’s personal care for leprosy sufferers. Aubineau speculates on the concepts and writings of Byzantine and earlier hagiographers, tracing back the idea of money given by rulers for building a palace, but actually spent on the poor. Parallels are found as far back as the apostle Thomas and King Gondafor in the apocryphal Acts of the Apostles (Acts of Thomas, Second Act, 17-24; translation available online).
Al-BAGHAWI (revised by at-Tibrizi). Mishkat al-masabih. English translation with explanatory notes, by James Robson, 2 vols, reprint 1994, Lahore: Sh. Muhammad Ashraf.
Baghawi’s 11th century selection of hadiths of the prophet Muhammad became popular after Tibrizi’s 14th C. revision. Some mention disabilities and treatments, e.g. Blindness & eye problems (pp. 36, 138, 217, 221, 231, 397-99, 405, 532, 663, 708-709, 745, 878, 889, 935, 945-54, 1035, 1133, 1296-97, 1302, 1342). Leprosy (pp. 98, 397-99, 526, 619, 955-56, 1221, 1379). Epilepsy, Idiocy, Possession (pp. 329, 526, 638, 697, 931, 945-54, 1033, 1220, 1260, 1291). Miscellaneous conditions (pp. 5-6, 36, 313, 508, 582, 664, 689, 763, 925, 934, 945-54, 997, 1274, 1345). These items suggest existing social responses and probably helped to shape attitudes. Most of the population lived in what would (by early 21st century European standards) be considered serious poverty. The prophet Muhammad reportedly remarked that, “The son of Adam has a right only to the following: a house in which he lives, a garment with which he conceals his private parts, dry bread and water” (noted by Uthman; transmitted by Tirmidhi) (p. 1076), amidst other sayings that promoted abstinence, frugal consumption, and the acceptance of whatever came from the hand of Allah. [The ‘house’ in this maxim would have been a shelter of a very modest nature, in keeping with the other entitlements...]
BOSWORTH, Clifford E (1976) The Mediaeval Islamic Underworld. The Banu Sasan in Arabic society and literature. Part One: The Banu Sasan in Arabic Life and Lore. Part Two: The Arabic Jargon Texts. The Qasida Sasaniyyas of Abu Dulaf and Safi d-Din. Leiden: Brill. 2 vols.
Reviewing texts on beggars and vagabonds in the earlier Arab world, details appear of those who pretended to suffer a variety of disabling conditions, e.g. vol. I: x, 19-24, 36-47, 84-95, 99-100, 110. (NB Some details are obscene or scatological). Vol. II contains texts, translations and notes.
CONSTANTELOS, Demetrios J (1968) Byzantine Philanthropy and Social Welfare. New Brunswick NJ: Rutgers UP.
Substantial work covering especially sources from the 10th to 12th C., detailing the hospitals, hospices, establishments for care of orphans, people with leprosy, elderly and infirm people, homes for the poor, blind, epileptic, totally incapacitated, or otherwise disabled people, at Byzantium, the Eastern Mediterranean and other parts of the Empire. See pp. 10, 66, 76, 86, 98, 99, 118, 122, 128-29, 136, 138, 150, 152, 154, 155, 164-67, 179, 233, 235, 242, 244, 259, 263, 264, 275-76, and terms such as ‘blind’, ‘cripple’, ‘epileptic’, ‘leprosy’ in the index. Motivations and religious beliefs are taken into account. The author was perhaps less sceptical than some historians, but nonetheless reviewed sources carefully. Among the philanthropists, he also noted some whose “humane attitude was blackened by various acts of cruelty” (p. 134).
CRECELIUS, Daniel (1991) The waqf of Muhammad Bey Abu al-Dhahab in historical perspective. Intl J. Middle East Studies 23: 57-81.
Detailed description of a large mosque and educational centre and the waqf [religious trust] foundation funding it, of which the building operation began in 1774, opposite the site of Al-Azhar, Cairo. Public recitation of the Qur’an continued from early morning to nightfall. Daily and annual disbursements are listed to “5 blind men as muezzins and muballighun”. Among the provisions for utilising any surplus from the wakf, after the original donor and his dependents had died, “two thirds of the surplus from the waqf was to go to the blind residents of al-Azhar and the zAwiya of the blind next to it.”
GREGORY of NAZIANZUS (c. 370) Oration 14. On Love for the Poor. Transl. M Vinson (2003) St. Gregory of Nazianzus. Select Orations, pp. 39-71. Washington DC: Catholic Univ. America Press. [Greek title: Peri philoptOkias. Latin: De Pauperum Amore. Gregorii Theologi, pp. 855-910 (Migne, Patrologiae Graecae, vol. 35, (1885).]
Sermon 14 was written in the context of the construction, 368-372 CE, of a cluster of hospital and care buildings, by Basil, Bishop of Caesarea, possibly the earliest extended Christian establishment for people with leprosy and other serious disabilities (though preceded by a smaller institution built by Eustathios of Sebasteia, c. 357). Vinson (p. xv) notes some “rivalry between pagans and Christians over the delivery of social services” at the time. Gregory wrote partly in a spiritualising mode i.e. we are “all poor and needy where divine grace is concerned”, and our “leprosy of the soul” needs healing. Yet he specifically addressed physical conditions and social exclusion. People with leprosy “are deprived of the opportunity to work and help themselves acquire the necessaries of life; and the fear of their illness ever outweighs any hope in their minds for well-being ... Besides poverty, they are afflicted with a second evil, disease, indeed, the most abhorrent and oppressive evil of all and the one that the majority of people are especially ready to label a curse. And third, there is the fact that most people cannot stand to be near them, or even look at them, but avoid them and are nauseated by them, and regard them as abominable, so to speak. It is this that preys on them even more than their ailment: they sense that they are actually hated for their misfortune. ... human beings alive yet dead, disfigured in almost every part of their bodies, barely recognizable for who they once were or where they came from; or rather, the pitiful wreckage of what had once been human beings.” (Vinson, transl., pp. 44-45). Gregory described further their exclusion from homes, streets, markets, even from sources of water. He contrasted the comfortable (but deceptively temporary) life of himself and his hearers, and demanded a compassionate practical response toward the suffering of fellow humans.
HINNELLS, John, BOYCE, Mary & SHAKROKH, Shakrokh (1992) Charitable Foundations, ii. Among Zoroastrians in Islamic times. Encyclopaedia Iranica V: 382-85.
Brief review of Zoroastrian charitable work in Islamic Persia and in India, which benefitted orphans, widows, disabled people and the poor in general. During the earlier 20th century, the problems of pauperising the poor became more evident, and some efforts were redirected to removing the causes of poverty.
IBN KHALLIKAN. Ibn Khallikan’s Biographical Dictionary. 4 vols (1842-1871), transl. Baron Mac Guckin de Slane. Paris: Oriental Transl. Fund.
Ibn Khallikan compiled 865 biographies of well-known Muslims through six centuries, with some information on disability. A contemporary was Muzaffar ad-Din (1154-1233), known as Kukuburi, ruler of Arbela (Iraq) from 1191. Among many welfare institutions, Kukuburi built “four asylums for the blind, and persons with chronic distempers: these were always full, with all things requisite for their wants”. An unusual detail was that “every Monday and Thursday he visited these establishments and entered into all the chambers”, giving gifts, asking how people were, “conversing affably with the inmates and jesting with them so as to soothe their hearts.” (vol. II: 535-43). Ibn Khallikan’s own family had received many benefactions from this ruler, but he emphasized that he had witnessed all the humanitarian work of Kukuburi, and “avoided even the slightest exaggeration”.
[+] ILCHMAN WF, KATZ SN & QUEEN EL (eds) (1998) Philanthropy in the World’s Traditions. Bloomington: Indiana UP.
Well-referenced chapters presenting motives and practices of philanthropy in various religious traditions, e.g. SA Arjomand on the Islamic world (109-132); GC Kozlowski on modern Muslim philanthropy (279-308). Little directly on disability, but the more positive social attitudes are implicit in philanthropic practices.
MAKDISI, George (1981) The Rise of Colleges. Institutions of learning in Islam and the West. Edinburgh UP.
Detailed history of the development of Madrasas and of European colleges, and of the waqf or charitable trust, and other legal frameworks for continuing financial support. Brief mention appears of disabled people, mostly blind. A person could not be appointed mutawalli, to administer a waqf, if insane, incompetent or untrustworthy; but equal consideration could be given to “males and females, the blind and those with eyesight” (p. 45). Some blind men became notable teachers, learning by heart the legal, grammatical and religious books they would teach to others: the jurisconsult Abu’l Hasan at-Tamimi (d. 918) was one such; and also Ibn al-Muna (d. 1187), who “went blind at the age of forty and was hard of hearing” (pp. 99-101). Most blind students achieved far less; yet with some effort, they could acquire skills to earn their bread for many years as Qur’an reciters. One Qur’anic scholar at Baghdad, Abu Mansur al-Khaiyat (d. 1106) had a very long life teaching the Qur’an to blind students (pp. 180, 331).
MILES M (2003) Segregated We Stand? The mutilated Greeks’ debate at Persepolis, 330 BC. Disability & Socy 18 (7): 865-79. Reproduced with revision at:
Probably the world’s earliest recorded policy debate in a large group of disabled people; also the first time a ruler put aside his own plan and gave them what they actually wanted. As Alexander reached Persepolis in January 330 BC, he was met by hundreds of Greeks who had been severely mutilated by their captors. Newly released from slavery, they were far from their homeland, without means to support themselves. Alexander agreed to help, and assumed that they wanted to return to Greece; but the men persuaded him to let them stay as a mutually supportive group and receive benefits in Persia with their local partners. Evidence is given of disabled people in Middle Eastern antiquity, social responses to severe disability, and war atrocities from antiquity and modern times.
MILLER, Timothy S (1985) The Birth of the Hospital in the Byzantine Empire. Baltimore: Johns Hopkins UP.
Chapter 5 (pp. 68-88 and notes pp. 231-37) on the 4th century, sketches the growing institutionalisation of philanthropy in Asia Minor, with some disabled people as (intended) beneficiaries.
PAHLAVI Texts. Part II. The Dadistan-i Dinik and the Epistles of Manuskihar, transl. EW West (1882) SBE vol. 18. Oxford: Clarendon.
Dadistan-i Dinik (or Religious Opinions of Manuskihar son of Yudan-Yim, Dastur of Pars and Kirman, A.D. 881). ch. LXII: 4, on inheritance, seems to suggest that a son (or his wife) “who is blind in both eyes, or crippled in both feet, or maimed in both his hands” receives twice the share of an able-bodied son, an unusual form of positive discrimination presumably on the basis of need.
SABRA, Adam Abdelhamid (2000) Poverty and Charity in Medieval Islam: Mamluk Egypt, 1250-1517. Cambridge UP.
Useful background study on poverty and charity. Mentions disabled people only incidentally (e.g. blind, lame, crippled, lepers etc, pp. 47-49, 60-61, 74-78, 85), but they were there among ‘the poor’ for whatever modest benefits were provided.
SARI N (1993) Turkish: [A short look on the protection of the disabled in Turkish history until the Republic of Turkey. I.] Tip Tarihi Arastirmalari 5: 21-33.
On Turkish charitable foundations e.g. almshouses, shelters, soup kitchens etc where poor people, some being disabled, received some help.
STILLMAN, Norman A (1975) Charity and social services in Medieval Islam. Societas: a review of social history 5/2: 105-115.
Recognises that although Muslims historically have taken seriously their duty to the poor and needy, studies on this topic have been few - charity has been largely an unrecorded, individual exercise rather than an official matter.
STILLMAN NA (2000) Waqf and the ideology of charity in medieval Islam. In: IR Netton (ed) Studies in Honour of Clifford Edmund Bosworth. Vol. I, 357-72.
Revisiting the topic 25 years after his first paper, Stillman used a more sceptical gaze, following the trend for historians to question who actually benefitted from charitable activities. (No specific mention of disabled people, who were subsumed among ‘the poor and needy’).
TRITTON, Arthur S (1954) Notes on the Muslim system of pensions. Bull. School of Oriental & African Studies 16: 170-72.
In laconic style, Tritton gave referenced notes on the start, practice and administrative problems of registration and pensions in the early centuries of the Muslim world. Disabled recipients are listed under the authority of Mansur (“unmarried women, orphans, and the blind”); Mahdi (“prisoners and lepers”); and Umar II (“the poor ... and the cripples”).
VITAE Patrum. De Vita et Verbis Seniorum Sive Historiae Eremitacae. Antwerp. 2nd edn, 1628. Partial English transl. at: http://www.vitae-patrum.org.uk
Among the Vitae [Lives] of the Desert Saints, in Egypt, Palestine and Syria of the early Christian era, there are stories of disabled people being healed or cared for. In Book 9, attributed to Theodoret of Cyrrhus (393-466), the story of Thalassius and Limnaeus appears in ch. XXII, at: http://www.vitae-patrum.org.uk/page137.html. This carries one of the earliest traditions of care for disabled people, in a Christian healing shrine and place of pilgrimage. Thalassius built a monastery (perhaps a hermitage), probably in present-day Syria, and trained the younger man, Limnaeus. The latter continued learning from other holy men, then chose a spot on a mountain above the village Targalla, and lived there within a walled space. People came to Limnaeus for his blessing, or healing. He also built little dwellings for blind people and beggars, around his walled space, and asked visitors to supply the necessities of life to these neighbours.
WILSON SG (1896) Persian Life and Customs with scenes and incidents of residence and travel in the land of the lion and the sun. 2nd edn. Edinburgh: Oliphant Anderson & Ferrier.
On a journey from Tabriz toward Teheran, Wilson described some pitiable leprosy sufferers begging at the roadside. Some also lived in a village of about 500 people with leprosy, who provided for themselves by farming. The village was said to have been instituted in the mid-19th century, to reduce contact between people with leprosy and the rest of the population (pp. 140-41). Beggars feigning disability also circulated (p. 214).
WORTABET, John (1873) Memoir on leprosy in Syria. British & Foreign Medico-Chirurgical Review 53: 173-98.
Detailed differential description and observations of leprosy, with six case histories treated in the 1860s at Beirut or Aleppo. Description of two “leper-houses of Damascus”, and analysis of details of 49 inmates. Remarks on the social situation of lepers.
ZAMBACO PACHA (1891) Voyages chez les lépreux. L’Égypte, la Palestine, les Iles de Mételin, de Chio, Samos, Chypre, Candie, etc. Paris: Masson. 407 pp.
Detailed reports from these places, by Dr DA Zambaco.
BLINDNESS in British African and Middle East Territories. Being the report of the Joint Committee appointed by the Colonial Office and the National Institute for the Blind, following the visit of a Delegation to Africa and certain British Middle East Territories between July, 1946, and March, 1947. (1948). London: HMSO. xii + 99 pp.
A response was noted nearly fifty years ago, in terms neither of government nor NGOs but of the urban African ‘almsgiving public’: “The intermediate stage between family responsibility and the assumption by the State of responsibility for the welfare of the blind has, in the course of centuries, been reached in many parts of Colonial Africa. Its characteristic is the emergence of a class of blind beggar in the large towns, in centres of detribalisation and in areas where Christianity or Mohammedanism have created an almsgiving public by extolling the virtues of charity.” (p. 8) Blind people organised in begging guilds were noted in Muslim regions of West Africa and the Eastern coast, and the report described the Muslim differentiation between ‘religious’ and ‘secular’ beggars. Yet while appreciating the ‘almsgiving public’ as a resource, the official reporters hoped for the day when “the greater advantage of contributing to organised charities” would be perceived (p. 9).
BROTMACHER, Leon (1955) Medical practice among the Somalis. Bull. Hist. Medicine 29: 197-229.
Based on studies in 1948 while Brotmacher was a medical officer in British Somaliland, data was reported ‘as told’ by Somali practitioners. Brief notes appear on disability and deformity. While some care was always given to the helpless sick, “chronic and elderly patients are apt to be neglected, and the crippled and deformed are left to manage as best they can, often drifting into the townships as beggars” (p. 202). Mental disease, epilepsy and deformities might be attributed to demonic action; while congenital diseases and abnormalities could result from shocks or influences on the mother during pregnancy (207-208; 213-14, 223).
BROWN, H Maughan (1935) Our land: is our population satisfactory? The results of inspection of children of school ages. South African Med.J. 9: 819-24.
One of a series, on South African white children only. Some data on ‘deformities’, and defects of vision, hearing and speech, among 80,736 Cape Province European children (1930-1935). Similar results are shown for children in England (1932). Nutrition in the Province was “fairly satisfactory”, except in some ‘poor-white’ settlements. (Compare data from KARK & LE RICHE, below).
BURRELL, Rex (1943) Preventable deafness. South African Med.J. 17: 40-42.
Over 40 cases of severe hearing impairment were found among nearly 200 indigent school children examined over several years. Notes adverse social attitudes towards deaf people. The man in the street “will tolerate the ‘poor old blind man’, but seeks to avoid the ‘stupid old deaf So-and-so’.” Laments “the dreadful plight of the unfortunate deaf person, his pathetic isolation, his loneliness in company, his apprehension in traffic, his negative social value.” Much preventable deafness failed to be prevented, because of poor medical and surgical practice.
CRUICKSHANK, Alexander (1962) The Kindling Fire. Medical Adventures in the Southern Sudan. London: Heinemann.
Cruickshank was a classic medical pioneer, working not as a missionary but in the civil medical service of Sudan for many years. He described with wry humour his slow acclimatisation to southern Sudanese cultures as he founded and built up a general hospital and huge leprosy colonies among the Azande in the 1920s with support of the local chiefs and later some Syrian medical officers, as well as running a sleeping sickness control project and acting as a magistrate in a vast area (pp. 31-53, 69-81). Leprosy colony conditions were sufficiently better than in ordinary villages, that healthy people used many tricks to get admitted as leprosy patients; but cured patients were discharged to their villages, with a little persuasion.
DEVLIEGER, Patrick (1995) From self-help to charity in disability service: the Jairos Jiri Association in Zimbabwe. Disability & Socy 10: 39-48.
An African man of Bulawayo, Jairos Jiri, thought that disabled people could make something of their lives, given the chance. Being poorly educated and living by menial labour, Jairos began sharing his living space and slender means with disabled beggars picked up from the street in Bulawayo. These modest origins have been overshadowed by the massive development of ‘Jairos Jiri Homes’, later associated with an ‘institutional charity’ ethos, the reverse of what the founder intended.
DEVLIEGER PJ (2000) The logic of killing disabled children: infanticide, Songye cosmology, and the colonizer. In: J Hubert (ed) Madness, Disability and Social Exclusion. The archaeology and anthropology of ‘difference’, 159-67. London: Routledge.
Based on ethnographic studies in the 1980s in the Kasai region of the Democratic Republic of Congo, Devlieger explores meanings of infant disability, infanticide, and conflicts with the former colonial state. Within the “cyclical vision of life” among the Songye, it was believed that “although the body is dead, the spirit of the child never dies.” When the spirit arrived with a ‘wrong’ body, one that was not whole, the Songye practised “a systematic examination at various levels: their environment, the ancestors, other (living) people, and ultimately God”, to learn why the body was not whole. There were various ways for the ‘wrong’ body to be ‘returned’ to God, or to some spiritual force. The infant body might be allowed to fall into the river, or be buried in a termite hill, where it would die and be disposed of. Some propitiatory acts would take place to amend the wrong that had resulted in the non-whole body being born. It was expected that the spirit would return in a whole body. These beliefs, logic and practices conflicted with the expectations of European colonisers, who perceived the activities as murder, rather than justified killing.
DOS SANTOS, Joao  Eastern Ethiopia. In: GMcC Theal (ed) (1901) Records of South-Eastern Africa, collected in various libraries and archive departments in Europe. Govt of Cape Colony.
Travel account by Fr. Dos Santos, first appeared in 1609 in Portuguese. (“Eastern Ethiopia” was then a huge area of Eastern and Southern Africa). In vol. VII, p. 320 of Theal’s edition, Dos Santos described night blindness in Mozambique; and on p. 251, a one-armed man at Inhaguea, who used his foot very ably as a second hand, and thus lived an independent life. See also albino children (pp. 214-15). Rulers had sometimes killed themselves if they acquired any physical deformity, but one ruler defied this custom, stating that it was stupid and he would not follow it (pp. 193-95).
[DYKE, Hamilton] (1933) The Health of Bechuanaland. South African Med. J. 7: 744-45.
Editorial quoting extensively from the annual report by Dr H Dyke, on aspects of the poor health of natives, and difficulty of making services available. Dyke visited a tribal school where some 80 children aged 10-14 were seen as “listless and apathetic”. He found that 60 of them had eaten nothing since the previous afternoon, as they received only one meal per day, on their return home from school.
FERRO-LUZZI, Giovanni (1947) Studio sui fenomeni di malnutrizione in Eritrea. Nota II. Malattia da “seberè” e latirismo in Eritrea. [Studies on the phenomenon of malnutrition in Eritrea. 2. “Seberè” disease and lathyrism in Eritrea]. Bollettino della Società Italiana di Medicina e Igiene Tropicale. (Colonia [Sezione] Eritrea) Estratto dal Vol. VII (No. 5-6): pp. 1-12. Ospedale Coloniale Principale “Regina Elena” - Asmara (Eritrea), (Reparto Medicina). [Originally pp. 483-94. Reproduced separately, paginated 1-12.]
Earliest published and detailed report on lathyrism in Eritrea. Six typical cases of people disabled by lathyrism, with clinical details. A locust invasion in 1945 devastated crops, so poorer people were obliged to make greater use of lathyrus sativus, despite the known risk. Cases comprised one female aged 30, five males aged 33, 25, 7, 3, and 17.
FISHER M, KILLCROSS MC, SIMONSSON M & ELGIE KA (1972) Malnutrition and reasoning ability in Zambian school children. Transact. Royal Socy Tropical Health & Hygiene 66: 471-78.
FOLLEREAU, Raoul (1954) Le Mozambique et la bataille de la lèpre. Comptes rendus de l’Academie des Sciences coloniales 14: 205-220.
FORBES, J Graham (1904) Medical report of the Anglo-French boundary commission: on the Western Frontier of the Gold Coast Colony -- January 1902 - May 1903. J Royal African Socy 3 (No.12) 381-97.
Much detailed medical evidence, with diagnoses of various disabling conditions or deformities, apparently including polio (p. 391): “Infantile paralysis. (a) Child, aet. 3; right leg affected. (b) Child, aet. 8; left leg affected.”
GOLBERRY SMX (1802) Travels in Africa, performed during the years 1785, 1786, and 1787, in the western countries of that continent, etc. Transl. F Blagdon. London.
Description (II: 353-54) of blind men on the West African coast, begging in groups, chanting Islamic scriptures.
GOLD COAST. Report on the Enquiry into Begging and Destitution in the Gold Coast, 1954. (1955) Accra.
HARRIS, W Cornwallis (1844) The Highlands of Aethiopia. London.
In an embassy to Sahala Selassie, King of Shawa in Southern Abyssinia [Ethiopia] in 1841, Cornwallis Harris (1844, II: 241, 246-47) witnessed a special distribution of royal alms to a vast throng of diseased and disabled people, including “the old, the halt and the lame, the deaf, the noseless, and the dumb, the living dead in every shape and form”. As they poured into the palace environs from near and far, there were bureaucrats keeping “an annual muster-roll” of beneficiaries: “all who were ascertained to have been participants in the distribution of the preceding year were unceremoniously ejected...”, so as to reduce the toll on the royal treasury. Harris noted that the mendicants who got past this check “were next classed in squads according to their diseases”, and so received their dole. It is not a very attractive scene -- yet in terms of locating and naming deaf or disabled people, this may have been one of the earliest African occasions when large numbers were present, and probably had their name and village recorded.
HOLZINGER, Friedrich (1899) O latirizmie [On lathyrism]. Nevrologichevsky Vestnik 7 (2) 1-38.
Paralysis through prolonged dietary dependence on lathyrus sativus (grass pea) is an outstanding case where severe poverty is a major cause of 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. This paper in Russian gave the earliest detailed account of lathyrism in North-East Africa, one third of it being cases in Abyssinia [Ethiopia] in 1896, where young doctor Holzinger took part 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 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. [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 2006.]
ILIFFE, John (1987) The African Poor. A history. Cambridge UP. ix + 387 pp.
Award-winning 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. 214-29 + notes 337-41. Iliffe found 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)
[+] JANZEN, John M (1994) Drums of Affliction: real phenomenon or scholarly chimaera? In: TD Blakely et al (eds) Religion in Africa, 160-81, (bibliog. 443-83). Portsmouth, NH: Heinemann.
[See annotation above under JANZEN in modern section.]
KARK, Sidney L & LE RICHE, H (1944) A health study of South African Bantu school-children. South African Med. J. 18: 100-103.
During 1938-39, over 7,000 ‘Bantu’ boys and girls were given a detailed examination in three urban and six rural areas across South Africa. Results included ‘postural deformities’ in 83 (1.16 %) children, apparently from injuries, TB, congenital deformity, rickets, birth trauma, infantile paralysis and syphilis. At least eight percent had noticeable eye and ear disease. Many signs of specific nutritional deficiencies were present. The “thin, round-shouldered, flat-chested, pot-bellied child with spindly legs” was so common as to suggest that “many were on the borders of starvation”, so no specific food remedy seemed to be indicated, but an all-round increase in nutrition.
LEAGUE OF NATIONS. Health Organisation (1929) Report on the Welfare of the Blind in Various Countries based on replies furnished to a questionnaire sent out by the Health Organisation of the League. No. C.H.818. Geneva.
The Union of South Africa was one of 26 countries responding. Pp. 90, 94, 107-108, show very doubtful data of only 6,550 blind people among 5.97 million population. p.134 comments on a circulating library for the blind at Grahamstown. p.162, brief notes on educational provisions; pp. 198-99, 205, 235 still briefer notes on employment and pensions or poor relief.
LUCAS, Adetokunbo O (1972) Medical aspects of the rehabilitation of beggars. In: FO Okediji et al (eds) The Rehabilitation of Beggars in Nigeria. Proceedings of a National Conference, 1-11. Ibadan UP, for Natl Cncl of Social Work in Nigeria. xi + 74 pp.
Suggests that disability is often the cause of people turning to begging. Deterioration of health may follow, through lack of shelter or crowded, unhygienic accommodation. There are some public health risks from beggars e.g. with leprosy or more contagious diseases. Lucas thought that much could be done to prevent disability, and to provide medical and rehabilitative care.
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, 126-41. Helsinki: Min. 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.
NACHTIGAL, Gustav [1879-1889] Sahara and Sudan, transl. AGB Fisher & HJ Fisher (1971-1987), 4 vols, London: Hurst.
Travelling in Saharan lands (1869-1874), the physician Nachtigal made extensive notes on diseases and observed many disabled people in great poverty, including deaf people. At Tajarhi (Libya), “Gedde, the burgomaster’s deaf and dumb son-in-law, who was perpetually drunk”, from whom he hired a camel (II: 40-41); at Kuka (west of Lake Chad), “Deaf and dumb slave girls” were sold for high prices to serve the wives of businessmen in some Islamic countries, and dwarf slaves were also in demand for Muslim rulers (II: 218). Nachtigal acquired a companion, Abd el-Ati, a wandering scholar and teacher, “half blind and hard of hearing” (II: 344-46). Blind beggars in “unbelievable numbers” roamed through Kuka (II: 160). Nachtigal visited a derelict “village of the blind” (Beled el-Amian) (II: 369). At Borku he saw people with “harelip” (II: 425). At Bornu in 1872 he learnt that the ruler and dignitaries had given gifts including “ordinary slaves, eunuchs, deaf-mutes and dwarfs” to an emissary of the Sultan at Istanbul (IV: 4). Travelling to Darfur (western Sudan) in 1874, he noticed a poorly dressed Arab with two slaves, one a deaf Dinka (IV: 243). He mentioned an early ruler of the Tunjur people, Ahmed el-Maqur (Ahmed the lame) (IV: 274-75). An appendix by the translators, on Wadai (Ouadai, Chad) and Darfur after Nachtigal’s visit, notes the reign (1874-1898) of Sultan Yusuf, who “sent eunuchs to Constantinople almost yearly; and once, when the Ottoman Sultan Abd el-Hamid asked him particularly for deaf-mutes, he searched his kingdom and sent all whom he could find.” Indexes show further mention of diseases with disabling effects.
OKEDIJI FO (1972) Sociological aspects of the rehabilitation of beggars. In: The Rehabilitation of Beggars in Nigeria. Proceedings of a National Conference, 24-37. Ibadan UP, for Natl Cncl of Soc. Work in Nigeria.
In a recent survey of 4,000 beggars in Lagos and Western State, over 70% were blind.
OKRI, Ben (1991) The Famished Road. London: Jonathan Cape. London: Vintage edition (1992), viii + 500 pp.
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) Mundanely, Azaro is a sharp-eyed, stubborn little boy whose father earns a pittance by casual labour while his mother hawks small items at market or on the roadside. Survival amongst the wretched of the earth, with thrashings at home and school and aimless adult brutality, is interspersed with dream sequences in a spirit world heavily populated by freakish entities. These are often depicted with gross abnormalities, having multiple heads or as midgets or with smashed features (e.g. pp. 15, 25, 134, 136, 274, 305, 326, 455, 459-60, 473), who are eventually understood by Azaro as non-human (p. 136). Some characters in the ‘ordinary’ world are more normally disabled. One old blind man of the neighbourhood, who perceives that Azaro is a spirit child, engages in various mischief and magic (pp. 313-314, 318-22, 349, 361-62, 393-400, 415, 420, 428, 454, 456, 464-65, 470, 472, 474-75). 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). Between the mystical and the real are various deformed tramps and beggars (pp. 415-16, 422, 429-30, 442-44, 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 more or less grotesque to his eyes. (The entire novel may also be interpreted in political terms).
PALLEY A & BRUWER T (1946) An analysis of the medical and social conditions of native children attending Groote Schuur Hospital Paediatric Out-Patient Department. South African Med. J. 20: 339-41
Results from interviews with mothers of 61 children (30 up to 1 year, 25 from 1 to 5 years inclusive). Housing and economic status was extremely poor, with seriously adverse consequences for children’s health. There were “no facilities in Cape Town for native children, e.g. nursery schools, crèches, etc.” Parental control and interest in the children’s health was rated “very good”. Fathers’ interest was “often seen by the fact that he accompanied the mother and child to hospital, often at the loss of a day’s pay.”
PANKHURST R (1984) The history of leprosy in Ethiopia to 1935. Med. Hist. 28: 57-72.
Draws extensively on foreign travellers’ reports from the 16th century onward and resident foreign physicians mainly from the 19th and 20th centuries, to picture a widespread condition resulting in large groups of beggars with severe leprosy damage.
RAYNE, Henry (1921) Sun, Sand and Somals. Leaves from the note-book of a District Commissioner in British Somaliland. London: Witherby.
[NB “Somals” is correct in the title. Some indexes inadvertently modernise it to ‘Somalis’.] Based at the port of Zeila, near Djibouti, Major Rayne recorded activities in the daily administration of justice, finance, shipping, customs etc, introducing his Indian and Arab subordinates and various local characters. He collected the ‘Poor Fund’ from wealthier citizens, dispensed it to “cripples, some of whom crawl on all fours, frail bent old men and women, deformed children”, and tested the stories of some who were blind or pretended to be so (pp. 24-28).
SANGARÉ ML (1978) Sourd-muet: je demande la parole. Dakar: Nouvelles Editions africaines.
Senegalese writer Moussa [Dono] Ly Sangaré reported his experience of deafness, starting c. 1953 when he was a schoolboy and suffered some hearing loss. Then one day, silence fell upon him. Moussa saw his teacher speaking, but heard only “une dérisoire cacophonie” (Sangaré, 1978, pp. 120-22). A tonsil operation brought slight relief, but his family could bear no more medical expense, at risk of starvation (p. 127). Moussa learnt to lip-read, capturing meaning from odd words half heard (p. 134). Further illness affected his mobility, and removed his voice. He decided that creative writing should speak for him.
[+] 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 who have usually lived in very considerable poverty and 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, with medical advances and complex social changes shifting the battlegrounds and their struggles for identity.
TURNBULL CM (1972) The Mountain People. London: Jonathan Cape.
Between 1964 and 1967, Turnbull studied the Ik people in the mountains of northern Uganda. Through socio-economic changes, the Ik were reduced practically to starvation, and Turnbull saw the disappearance of what he had believed to be ‘normal’ human care for weak, disabled or elderly people, and its replacement by cruel teasing and abandonment to starvation (pp. 112-14, 131-37, 225-29, 267). Turnbull was well known for unconventional approaches and interpretations, yet there is no reason to think that he fabricated reports of Ik behaviour, which he found deeply disturbing.
TURNER, Victor (1967) The Forest of Symbols. Aspects of Ndembu ritual. Ithaca: Cornell UP.
Classic collection of Turner’s papers on work among Ndembu people of north western Zambia in the 1950s and early 1960s. Ch. 6, “Muchona the Hornet” concerns a healer and specialist in divination and other rituals, who was also a marked person, being of short stature (“a swart elderly gnome”), dubious local status (son of a debt slave mother, given to women’s company, “a Tiresias figure”), suffering “social marginality and psychical maladjustment”. The incongruity of this weak little man’s strong intellect and insight into village politics and undercurrents led him to a defensively comic or jester role; but Turner and the local teacher, Windson, spent eight fruitful months exploring local beliefs, customs, rituals and healings with Muchona (pp. 131-50). Chapters 9 and 10 (pp. 299-393) give considerable detail of medicine, disease, misfortune and affliction among the Ndembu, with practical treatment or management. Disabling conditions such as backache, epilepsy, eye diseases, insanity, leprosy, otitis media, smallpox, and their treatment, are discussed and indexed.
WILSON, John (1953) Blindness in Colonial Africa. African Affairs 52 (No. 207, April) 141-49.
“You do not see the blind until you do something for them, as the South Africa Government found when, some years ago, it instituted a small blindness pension and 30,000 blind people, not previously recorded, came forward to receive it.” Wilson was himself blind, and made it his business to see and hear blind people across Africa over many years, and to gather information and feed it into the British Empire Socy for the Blind, and its successor organisations,. He published his travels and what he learnt from them about the conditions of great poverty in which most blind Africans lived, and the capacity of many of them to take up opportunities for self-help and vocational training when offered.
WILSON, John (1957) Blind children in rural communities. Proceedings, International Conference of Educators of Blind Youth, Oslo, Norway, August 1957. New York: World Cncl for Welfare of the Blind.
Wilson described an excellent example of rural education of blind boys in pre-Independence Zimbabwe, combining total integration into African village life with a modest access to Brailled literature, achieved by local people within their own local resources.
NOTE. From an extensive literature, this handful of European historical items is a reminder that throughout European history most people lived in economic conditions that would, in 2006, look similar to ‘Third World poverty’. Probably a majority of Europeans with disabilities have always lived in less favourable socio-economic conditions than the average. In Western Europe now, disabled people seldom beg on the street; nor are they often found dead of starvation or lack of shelter, unless subject to further hazards such as addiction to alcohol or other drugs. Yet many in 2006 live with a strong sense of relative deprivation. Their earnings, welfare benefits or family support mostly give access to a level of consumption and opportunity below the average enjoyed by their neighbours. Further disadvantages are associated with gender, youth and old age, and social class. Certainly there has been much material progress since the times described below; yet it may be debated how far there has been progress in the non-material human factors and assets, whereby people’s lives, with or without disability, may proceed with a feeling of self-worth, dignity, acceptance in the local community, and opportunities to make a valued contribution to society.
BURN, Richard (1764) The History of the Poor Laws: with observations. London. (Reprinted 1973, Clifton, NJ: Augustus M Kelley Publishers).
Compiled by a Justice of the Peace in the County of Westmoreland (now part of Cumbria, England), this study shows how, in the middle of the 18th century, a person with responsibilities in local law and governance, being in regular contact with the public effects of poverty and its relief, found it worthwhile to list the cumulative Poor Laws in detail, and to note their defects, along with various contemporary welfare schemes. “The Impotent Poor” occupy pp. 60-103, listing people with a variety of disabilities, chronic illness, or old age infirmity, that rendered them unable to work or support themselves. From the perspective of 1764, Burn found it remarkable, that “almost every proposal which hath been made for the reformation of the poor laws, hath been tried in former ages, and found ineffectual” (p. 106).
GEREMEK, Bronislaw (1994) Poverty: a history, transl. A Kolokowska. Oxford: Blackwell.
Discussing specialised asylums, ‘hospitals’, orphanages, pauper homes and old people’s shelters in Europe of the later Middle Ages, within a section on “Alms and beggars” (pp. 36-52), Geremek notes that “The criteria of selection for this kind of permanent support are fundamental to the definition of poverty in the Middle Ages: its recipients were above all the infirm and disabled, orphans and the elderly, in other words those whom material poverty had placed in a particularly wretched social condition.” (p. 43) Professional beggars were adept at faking a suitably ragged and crippled appearance (48-49), and city authorities made varied and ineffectual efforts to deter such fraud. Blind men organised themselves into ‘brotherhoods’ in some European cities, from the 14th century onward (p. 51).
JONES, Gareth S (2004) An End to Poverty? A historical debate. London: Profile.
Revolutionary changes in late 18th century Europe threw up the serious proposal that poverty could and should be abolished by planned social actions. In debates among European economists and politicians on this remarkable idea, it seems that disability, chronic sickness and incapacity, and the infirmities of old age, were prominent among the poverty-linked obstacles that would require realistic solutions. The lame or blind beggar, the impoverished old widow, and their dependence on some kind of charitable dole, would not easily be made to vanish (pp. 13-14; 77-78; 88; 111-113; 153; 197-98; 202; 204-205; 213-14).
JEANSELME E (1931) Comment l’Europe, au Moyen Age, se protégea contre la Lèpre. Bull. Société Française d’Histoire Méd. 25 (1 & 2): 3-155.
Formidable study, ranging widely through archival evidence, from Southern Italy to the Nordic countries, citing and quoting material from a long ‘Middle Ages’ (6th to 19th century!), with 18 pages of “Pièces Justificatives” giving longer quotations (mostly French, Latin, and Scottish). Leprosy provisions, intended both to protect the population and to provide the basic necessities of life to those with leprosy, act as surrogate indicators for both the dismal socio-economic conditions in which the poorer classes lived, and the range of legal and humanitarian responses offered to those with any disability or chronic illness, whether by medical treatment, religious exhortation, incarceration, exclusion, asylum, daily bread from the parish, maintenance within the family, street begging, or itineration around a circuit of temporary shelters.
KAISER, Daniel H (1998) The poor and disabled in early Eighteenth-Century Russian towns. J. Soc. Hist. 32: 125-55.
For data on poverty, disability and infirmity in individual and households, Kaiser studied tax and census records from ten towns in the 1710s and 1720s, and some later evidence (pp. 131-35, 146-50). Recorded disability prevalence varied widely, from under 1% to over 7%, with females seriously under-represented. Many disabled people depended on their able-bodied relatives. Some lived in almshouses or poorhouses.
McCABE, Francis Xavier Frederick (1889) Idiots and imbeciles. [Witness statement, # 21,010 - 21,126] In: Report of the Royal Commission on the Blind, the Deaf and Dumb, &c., of the United Kingdom, pp. cxvii - cxx, paragraphs 806-826. London.
The Royal Commission heard Dr McCabe, Medical Commissioner under the Irish Local Medical Board, describe the state of ‘idiots and imbeciles’ in sample urban (South Dublin) and rural (Carlow County) areas of Ireland, which he studied in 1883. There was scanty asylum provision; the great majority lived at home. A [now-familiar] debate was under way as to how better provision should be made, and on whose budget. “It was contemplated [Trench report, 1879]... that in the course of time the Lunacy Department and the Local Government Department should be merged in one.” [!] The Commission had already noted (p. lvi, para 340) that “If the parents would take, or were capable of taking, an interest in their children’s education, they would be better at home; the very best institution can never entirely replace the influence of home, but if a child goes home to a squalid dwelling, where parents cannot look after it...” [then other provision might be needed.] The view was reiterated (p. ci, para 687), that “Even when they have bad parents, it is a very serious thing to interfere with parental responsibility...” However, the Commission quoted McCabe (in para. 823) on typical conditions:
“I found that little boy [J.D.], 14 years of age, an idiot, and he was perfectly naked, lying in a filthy bed, wretchedly neglected, unable from confinement to bear the light, and who ought to have been in an institution. That was a child who was lapsing into blindness from neglect. The next on the list is J.B., aged 16, another pitiful case -- a congenital epileptic idiot lying on straw in a wretched room. He was whining and sobbing when I went in to see him. He was alone in the house, and the neighbours all stated that he ought to be looked after. He was lying naked, his limbs were contracted, his body filthy, and chilblains on his feet. That gives an idea of the conditions of these unregistered idiots at large.”
“There is absolutely nothing done for them. I have found cases in my visitations in those two places where parents when they were obliged to go out to do their day’s work, simply locked the imbecile children in. I have found them sometimes in a cabin in company with a pig, or a cat, or sitting over a fireplace without a fire in it in the middle of winter. And if they are able to go outside they are only too often made the object of ridicule by others, by the children about. The result is, that the worst parts of their characters are developed and brought into prominence, and all their gentler attributes are kept in abeyance. Then when you come to girls, who have just passed the age of puberty, even worse results sometimes follow.”
The Commission also proposed education: “826. Two educational institutions for the idiot class would be sufficient for Ireland, one in the south for the Roman Catholic imbeciles, and in the north one for the Protestant imbeciles.”
MIDELFORT, HC Erik (1999) A History of Madness in Sixteenth-Century Germany. Stanford UP.
In this award-wining book, chapter 7 (pp. 322-84) gives a detailed and well-referenced account and discussion of poor relief and the care of poorer people with mental disabilities, amidst many other disabled people, in hospitals of 16th century Germany.
PELLING, Margaret (1981) Old age, poverty and disability in early modern Norwich. Work, remarriage, and other expedients. In: M Pelling & RM Smith (eds) Life, Death and the Elderly. Historical perspectives, pp. 74-101. London: Routledge.
Concerned with elderly disabled poor at Norwich, a city of South-East England, in the later 16th century.
PELLING M (1985) Healing the sick poor: social policy and disability in Norwich 1550-1640. Med. Hist. 29: 115-37. [accessible via Pub Med]
PULLAN, Brian (1994) ‘Difettosi, impotenti, inabili’: caring for the disabled in early modern Italian cities. In: Poverty and Charity: Europe, Italy, Venice, 1400-1700, VI: 1-21. Aldershot: Variorum.
Between c. 1520 and 1560, many West European bureaucracies worked on solutions for problems of urban poverty. Among persons accepted by Italian cities as poor and worthy of relief in this period were the difettosi, impotenti and inabili, folk considered “permanently incapable of supporting themselves by labour, as a result of a visible and external physical deficiency or deformity such as blindness or lameness, or of a chronic internal condition or infection, or an incurable disease.” Even people with such qualifications might encounter a range of public attitudes, some more rejecting than accepting, depending on levels of prejudice, revulsion, experience of being deceived by those pretending disability, and irritation at the ‘pester power’ of street beggars. Pullan describes a range of disabled beggars and their pitches, with official actions to control, disperse, detect cheats, arrange institutional care, issue a limited number of licenses to beg, and whatever other measures occurred to them. Some guilds or brotherhoods of blind or otherwise disabled people existed, at least from early 14th century Italy.
RUSHTON, Peter (1988) Lunatics and idiots: mental disability, the community, and the Poor Law in North-East England, 1600-1800. Med. Hist. 32: 34-50.
STIKER HJ (1999) A History of Disability. Ann Arbor: Univ. Michigan. Transl. W Sayers of original Corps Infirmes et Sociétés (1982, revised 1997), Paris: Editions Dunod.
Chapter 4, The System(s) of Charity, pp. 65-89, 213-17, is particularly pertinent to the discussion of disability and poverty in some major southern European countries in medieval times.
VIVES, Juan Luis (1526) De Subventione Pauperum [On Poor Relief]. In: FR Salter (transl. & ed, 1926) Some Early Tracts on Poor Relief. London: Methuen.
Vivés addressed the Senate of Bruges in 1526, drawing on 14 years living there and experiences in his native Valencia. He managed to crystallise some decades of earlier debate and action in European cities seeking solutions to communal problems of poverty, need, and imbalances of wealth distribution. Vivés gave a detailed account of needs, opportunities, risks and solutions, while rebutting some contrary views. Civic duties existed to care for the poor; to differentiate those unable to help themselves from the idle but able-bodied beggars; to provide opportunities of self-supporting work to all; to find finance by reorganisation and better management of existing charitable foundations, publicly contributed funds and charity boxes; and to institute more trustworthy management and surveillance of the programme. People with disabilities, chronic ailments, mental disorders, and old age infirmity, figured in the discourse. Vivés believed that “no one is so enfeebled as to have no power at all for doing something.” If a person was “elderly, or too dull of intellect”, lighter tasks and modified activities were listed. Vivés would not “allow the blind to sit or wander about idly ... Some are capable of study, let them study; ... Others are musical, let them sing, or play stringed instruments or the flute”. Others could try a list of handicrafts. The effort of self-support should be supplemented by charitable funds in a kindly way, balanced so as to avoid leaving people semi-starved, while not removing all need for their own continuing efforts.