The invisibility of people with disabilities in international development
Disability is still largely absent from data collection and monitoring mechanisms in international development (Mitra, 2013, p. e178). The invisibility of people with disabilities in the mainstream development narrative has ‘resulted in development interventions unintentionally leaving out people with disabilities from their target groups’ (Al Ju’beh, 2015, p. 50; Bruijn et al., 2012, p. 20). Lack of data about disability means that policy makers and practitioners are more likely to put disability aside (Groce et al., 2011, p. 1501). It has contributed to the false impression that people with disabilities are a ‘very small group, reserved for the specialist attention of health or rehabilitation professionals and beyond the scope of development studies’ (Mitra et al., 2013, p. 1).
The UN Expert Group on Disability Data and Statistics, Monitoring and Evaluation finds that ‘data disaggregated by disability in all areas will be essential to ensure progress is measured and persons with disabilities are not left behind in future mainstream development programmes’ (UN, 2014, p. 9).
Difficulties in measuring disability
Disability is complex and therefore difficult to measure: ‘no gold standard measure exists, different measures exist for different purposes, and the use of different measures in different countries makes international comparison of prevalence or outcomes difficult’ (Mitra, 2013, p. e178; Madans et al., 2011, p. 3; Wissenbach, 2014, p. 4). Measuring child disability is particularly difficult as children develop at different speeds, which makes it difficult to assess function and distinguish significant limitations from variations in normal development (UNICEF, 2013, p. 63). In addition, people with disabilities may not be willing to identify themselves for fear of becoming labelled and marginalised (Kett & Twigg, 2007, p. 97). Developing global indicators for the monitoring and evaluation of disability policies and programmes is very challenging (Groce et al., 2011, p. 1508).
Frameworks and indicators for monitoring and evaluating disability inclusion
The Washington Group questions
The UN recommends using the Washington Group questions to gather disability data consistently across the world. There are many other recommendations for the inclusion of the Washington Group questions in censuses, and government, UN, and NGO data collection (UN, 2014, p. 10), and global household surveys such as the Demographic and Health Survey (DHS) (Mitra, 2013, e178). For example, DFID has made a commitment (in 2013) to advocate for the use of the UN’s Washington Group questions on disability in DFID-supported surveys and censuses, and is encouraging bilateral and multilateral partners to do the same (DFID, 2014, p. 9). The questions can be used to monitor the impact and implementation of the UNCPRD and other disability inclusion efforts by donors and NGOs (Madans et al., 2011, pp. 1-2, 5; Mitra, 2013, p. e178; UN, 2014, p. 6).
The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organisations. Its members work towards disability definition and measurement that is culturally neutral and reasonably standardised (Madans et al., 2011, p. 1).
Washington Group short set of questions
The Group has produced a shortlist of questions to measure disability consistently worldwide, mainly through use in censuses and household surveys (Madans et al., 2011, p. 1). The shortlist includes six questions – five on functional limitation (limitations in seeing, hearing, walking or climbing steps, concentrating, and communicating) and one on self-care (limitation in showering or dressing). They use a severity scale to capture the full spectrum of functioning (Madans et al., 2011, p. 4).
The Washington Group short set of questions can be used for disaggregating data to track SDG indicators (UN, 2014, p. 19). The questions, in combination with general wellbeing questions, on for instance, employment or education, can also be used to assess participation and equal opportunities. This is an alternative to identifying needs for rehabilitation or barriers in the environment, which require a longer set of questions or a dedicated disability survey (Mitra, 2013, p. e178; Madans et al., 2011, p. 3).
Washington Group extended sets
The Washington Group has also developed extended set questions on functioning. In addition, in order to ‘accurately assess disability in children, care must be taken to use questionnaires specifically designed for the purpose’, and UNICEF is working with the Washington Group to develop a screening tool specifically for children (UNICEF, 2013, pp. 67-68).
Other complementary methodologies are also being developed that provide more detail than the short set of questions (UN, 2014, p. 7; Wissenbach, 2014, pp. 4-5). For example, a Model Disability Survey is being developed by WHO and the World Bank, with the aim of providing data on all aspects of disability (impairments, activity limitations, participation restrictions, related health conditions), as well as environmental factors (UN, 2014, pp. 7-8). It is a general population survey designed to address Article 31 of the Convention on the Rights of Persons with Disabilities by collecting data to compare the participation and inclusion rates of people with disabilities and those without.
- Al Ju’beh, K. (2015). Disability inclusive development toolkit. Bensheim: CBM. See document online
- Bruijn, P., Regeer, B., Cornielje, H., Wolting, R., van Veen, S., & Maharaj, N. (2012). Count me in: Include people with disabilities in development projects – A practical guide for organisations in North and South. Veenendaal: LIGHT FOR THE WORLD. See document online
- DFID. (2014). Disability framework: Leaving no one behind. London: DFID. See document online
- Groce, N., Kett, M., Lang, R., & Trani, J-F. (2011). Disability and Poverty: the need for a more nuanced understanding of implications for development policy and practice. Third World Quarterly, 32(8), 1493-1513. See document online
- Kett, M., & Twigg, J. (2007). Disability and disasters: Towards an inclusive approach. In World disasters report – Focus on discrimination. Geneva: IFRC. See document online
- Madans, J. H., Loeb, M. E., & Altman, B. M. (2011). Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: The work of the Washington Group on Disability Statistics. BMC Public Health, 11(4), 1-8. See document online
- Mitra, S. (2013). A data revolution for disability-inclusive development. Lancet Global Health, 1(4), e178 – e179. See document online
- Mitra, S., Posarac, A., & Vick, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Development, 41, 1-18. See document online
- UN. (2014). United Nations expert group meeting on disability data and statistics, monitoring and evaluation: The way forward- A disability-inclusive agenda towards 2015 and beyond. New York: UN. See document online
- UNICEF. (2013). The state of the world’s children 2013: Children with disabilities. New York: UNICEF. See document online
- Wissenbach, L. (2014). Pathways to inclusive development: How to make disability inclusive practice measurable? (Discussion Papers on Social Protection). Bonn: GIZ. See document online