That the majority of the world’s disabled people live in developing countries is a truism; that they are disproportionately disadvantaged and desperate is an affront to all of us, particularly those of us who work in the disability field. Disabled people have higher costs than others; experience worse healthcare than others; are more likely to be excluded from school; and are more likely to be poor. Adding insult to injury is that there is a lack of good quality research about the majority world disabled population, which is why the committed work and scholarship of researcher/activists such as Shaun Grech is so welcome.
This dense book, oozing first-person quotations, documents in vivid detail the depredations and indignities suffered by disabled people in Guatemala, one of the poorest countries in the world, with a gross national income per capita of $7130 (at purchasing power parity). It is a very unequal country, divided between indigenous Mayan peoples and the Ladino peoples of mixed Spanish-Mayan heritage. Approximately half of the children aged under five suffer stunting due to malnutrition. There are growing problems of chronic disease, such as cardiovascular disease, diabetes and Chronic Obstructive Pulmonary Disorder (COPD). Guatemala has the second lowest public spending on health in the Latin America and Caribbean region.
Grech describes the ongoing research which underpins Disability and Poverty in the Global South as loosely ethnographic: over 11 years, he has conducted interviews and observations with 80 disabled adults, 35 family members, 27 community members and 35 stakeholders. These findings document the difficulties faced by disabled people, focusing mainly on health experiences and on the struggle for economic survival. It is very clear from this book how illness and impairment play a huge role in the lives of poor people. As one interviewee, Daniel says:
I do not know the place where you come from, but here it is different. Every day is a struggle to keep alive. If you do not know anything about the mountain, us indigenous people, how we have to work the land to eat, with no health care, no money, isolated … no help … It is useless, you will not know how I live my illness. With words you cannot eat … the problems here are problems that only us poor people face and know. (57)
At the same time, Grech gives appropriate weight to the role of cultural factors – for example, ideas about masculinity or the role of sexual violence. In developed countries, we often take the health service, the transport system and the education system for granted: this book shows how, when these basic facilities are lacking, it is disabled people and their families who are the main victims.
After surveying the poverty on the ground, Grech reports on the lack of interest or awareness shown by some of the stakeholders, professionals and politicians – mainly urban – whom he interviews. Like a campaigning journalist in the Jon Pilger mould, the author responds passionately, his engaged position sometimes undermining our confidence in his objectivity – for example, ‘neo-liberalism’, Non-Governmental Organisations (NGO) and international agencies come in for regular criticism. It is hard to balance the commitment to the poorest with the distance that is sometimes required of the scholar.
There are other limitations and problems with this book. I vastly prefer ‘empirical Grech’ to ‘theoretician Grech’. He is not always a clear writer, and the book as a whole is not structured very logically. He occasionally resorts to a list of bullet points, rather than a systematic analysis. Sometimes it feels as if we cannot see the wood for the trees. I would have preferred to have had discrete sections on health, education, work and so forth: the more organic structure favoured by Grech leads to a lot of repetition. Moreover, there is already a rich development literature on Guatemala: situating these new findings in the context of what is already known would have been useful. Although nearly 200 people were involved in the research, we do not get a full picture of any of their individual lives. It might have been helpful to have had some case studies of individuals and families, to elaborate on the brief quotations which pop up regularly.
Above all, the litany of distress and disaster is very hard to take in. There are some signs of improvement in Guatemalan society – such as falling maternal and under-five mortality rates – and there are projects from NGOs and government which achieve some measure of success. Here, only the small local Disabled People’s Organisations (DPO) are endorsed whole-heartedly: national and international bodies are seen as self-serving and irrelevant to the rural poor. But what can be done? What would it take to give disabled people a chance of benefitting from Guatemala’s slow march towards development? I believe it is important to balance sober assessment of the very real problems with constructive pointers towards the possibilities for improvement. If not, there is a risk that the reader ends up feeling hopeless, even fatalistic, as if there is nothing that can be done, which I am sure is the last thing which this researcher/activist would want.
These quibbles notwithstanding, this important book is a rich and detailed addition to the literature on disability and development, and the author is to be applauded for the example he sets of sustained engagement and exploration.
Norwich Medical School, University of East Anglia, Norwich, UK
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© 2016 Tom Shakespeare
http://dx.doi.org/10.1080/09687599.2016.1214425