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Disability in the Global South pp 51–68Cite as

Counting Disabled People: Historical Perspectives and the Challenges of Disability Statistics

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Abstract

Over more than three decades, the need for refining and improving disability definition and measurement, and using those tools to analyse the life experiences of individuals with disability, has been advanced through international initiatives and policy documents. With respect to the former, the work of the World Health Organization in the development of the International Classification of Functioning, Disability and Health (ICF) (WHO 2001) and the formation, in 2002, of the United Nations Washington Group on Disability Statistics have been paramount. In terms of policy, the focus of the international community has been directed to issues of disability in recent decades, highlighted with the World Program of Action Concerning Disabled Persons (UN 1982; 1993), The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN 1994) and more recently in the UN Convention on the Rights of Persons with Disabilities (Article 31) (UN 2006) and the Report by the High-Level Panel on the Post-2015 Development Agenda (Chap. 4, page 23) (UN 2013a). Estimation of disability prevalence in a population, statistics on access to basic services and descriptions of the status of living conditions are regarded as important for policy development, for planning purposes, for resource allocation, for monitoring, impact assessments and comparisons across groups, for awareness building and as a foundation for advocacy work and improved dialogue between stakeholders, including disabled people’s organisations (DPOs) and relevant national authorities (Madans et al. 2004). Reliable and valid disability statistics are seen as instrumental for monitoring the implementation of the UN Conventions, and to ensure the human rights of people with disability. This understanding has also been adopted by the international disability movement, as exemplified by the recent resolution of the International Disability Alliance supporting an inclusive post-2015 development agenda for persons with disability in Africa (point 6) (IDA 2014). This chapter draws some historical lines to illustrate the development of the discourse on disability and uses this as a background for a critical examination of current possibilities and challenges in disability statistics.

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Notes

  1. 1.

    Examples of participatory approaches in research include 1) SAFOD Research Program , funded by DFID and run by the Southern Africa Federation of the Disabled (http://www.safod.net/programs.html); 2) Living conditions among people with disability in southern Africa. Funded by the Norwegian disability movement and run by SAFOD in collaboration with SINTEF; 3) The Cross-Cutting Disability Research Program, run by the Leonard Cheshire Disability and Inclusive Development Centre, funded by DFID (http://www.ucl.ac.uk/lc-ccr/ccdrp).

  2. 2.

    In many instances, the understanding of disability, i.e. the underlying model, is not necessarily formulated in an explicit manner when disability research and statistics is implemented and published. Further, implicit or explicit understandings of disability are often not very precise and perhaps even superficial, as for instance many researchers referring to ICF without really explaining how it influences the research. The following examples are intended to illustrate how the different models influence current research. Firstly, application of the medical model is found in continued collection of impairment data by national statistical offices, in particular in low-income countries (see e.g. https://unstats.un.org/unsd/demographic/sconcerns/disability/disab2.asp), and in much of the work with core sets derived from the ICF classification system (see e.g. http://www.icf-research-branch.org/download/viewcategory/5.html). Secondly, the social model has heavily influenced qualitative and in particular anthropological disability research (e.g. Ingstad and Whyte 1995), and also statistics through mapping of facilitators and barriers for participation (e.g. the Facilitators and Barriers Survey (Gray et al. 2008)). Thirdly, elements of an interactional model may be found in research on disability and poverty where the focus is on the exchange between an individual and his/her environment (see e.g. Eide and Ingstad 2011), and also may be found in comprehensive surveys incorporating all elements in the ICF model (e.g. Eide and Jele 2011).

  3. 3.

    DALYs combine time lived with a disability and time lost due to premature mortality. Years lost due to premature death is calculated on the basis of standard expectancy of life. Years lost due to disability is calculated on the basis of developed weights reflecting loss of functional capacity. The critique of DALYs concerns both their technical and conceptual basis. A major point is that DALYs are a narrow measure that oversimplifies human lives and does not take into account individuals’ different ability to cope with their functional limitation, nor does it include efforts by family, friends and communities to reduce barriers, and contextual differences in support systems are excluded (Anand and Hanson 1997). From the perspective of disability studies and the social model of disability, it is the very idea of medicalising disability and making it a health issue, for instance through health-related classifications and measures. Disability is viewed as a social and not a medical phenomenon, and DALYs are problematic as they devalue the lives of individuals with chronic illnesses or functional limitations.

  4. 4.

    Due to limitations of the census format, not all functional domains could be included, so that some of those identified as not having a disability may have other functional limitations that were not identified using the short set.

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Authors and Affiliations

  1. Department of Health, SINTEF Technology and Society, PB 124 Blindern, Oslo, 0314, Norway

    Arne H. Eide

  2. National Center for Health Statistics/Washington Group on Disability Statistics, Washington, DC, USA

    Mitchell Loeb

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  1. Arne H. Eide
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Correspondence to Arne H. Eide .

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Editors and Affiliations

  1. Centre for Global Disability Research, The Critical Institute, Attard, Malta

    Shaun Grech

  2. Institute for Culture and Society, Western Sydney University, New South Wales, Australia

    Karen Soldatic

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Eide, A.H., Loeb, M. (2016). Counting Disabled People: Historical Perspectives and the Challenges of Disability Statistics. In: Grech, S., Soldatic, K. (eds) Disability in the Global South. International Perspectives on Social Policy, Administration, and Practice. Springer, Cham. https://doi.org/10.1007/978-3-319-42488-0_4

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