Leave no one behind
23 October 2018
Dispelling old assumptions about data disaggregated by disability
By Professor Nora Ellen Groce, Dr Ola Abu Alghaib and Kate Turner
Data experts have descended on Dubai this week at the World Data Forum, and yesterday we shared our latest research and work on data disaggregated by disability given the important role it plays in policy planning, design and implementation.
The inclusion of disability questions in many national surveys and censuses has benefited from improved methodologies, particularly the Washington Group questions that provide quick, low-cost ways to collect and analyse such data. UN agencies, NGOs and DPOs are increasingly using the Washington Group questions and donors often require that funding applications include data disaggregated by disability using the Washington Group Short Set Questions.
In partnership with Humanity & Inclusion, we’ve prepared a report ‘Disability Data Collection: A summary review of the use of the Washington Group Questions by development and humanitarian actors’ which outlines our research and findings on the use of the Washington Group questions in different types of data collection activities. By working together and sharing these insights and learnings, Humanity & Inclusion and Leonard Cheshire hope to contribute to global dialogues about data collection disaggregated by disability.
Leonard Cheshire and Humanity & Inclusion have identified successful examples of using the Washington Group Questions by both development and humanitarian actors in their data collection efforts. However, both sets of research also have shown that it is not always possible to collect data on persons with disabilities in acute humanitarian crises. They also show that the Washington Group Questions are not an appropriate methodology for every situation.
‘If you don’t count it, it doesn’t count’
Moving to the global and national level, the old adage ‘if you don’t count it, it doesn’t count’ has particular relevance here. Many policy and decision makers continue to incorrectly assume that reliable data on people with disabilities is still lacking – and use this assumption to justify excluding disabled children and adults from many poverty alleviation efforts. The need for good disability data to better understand and improve the lives of the 1 billion people worldwide who live with a disability could not be more pressing.
Yet, until recently, systemic collection and analysis of disability statistics has been largely overlooked.  Growing efforts to collect and analyse data on persons with disabilities has increased significantly in recent years. In part, these efforts have been spurred on by data collection requirements called for in the UN Convention on the Rights of Persons with Disabilities (CRPD) — (now ratified by 177 countries) — and inclusion of disability within the Sustainable Development Goals with their call to ‘leave no one behind.’
Quick, easily accessible and widely useable
Leonard Cheshire has been working to support these activities; not only do we host the Washington Group Secretariat at our research centre at UCL London, we recently launched the Disability Data Portal, which was created for the Global Disability Summit in London in July 2018. This new Portal is an important new resource for global data on persons with disabilities and it is intended to be a global repository that can provide a quick, easily accessible and widely useable reference point for data on people with disability in countries around the world. 
The Disability Data Portal pulls together the growing body of data, that in the past, has been difficult to find, use and compare because it has been scattered through many national censuses, surveys, studies and reviews, using a range of different collection instruments and is not consistently analysed or widely disseminated. Currently the Portal hosts data disaggregated by disability in 40 countries across 16 development indicators.
The Portal focusses on four thematic areas in line with the Global Disability Summit — inclusive education, stigma and discrimination, technology and innovation, and economic empowerment. It provides an easily accessible ‘one stop shop’ for data on people with disabilities, pulling together a wide array of data from dozens of censuses, surveys and other data collection instruments at national and regional levels.
Policy and decision makers can no longer hide
The Portal is an open source and a collaborative resource to be used widely by international agencies, governments, civil society, researchers and advocates. The information is intended not only for those who concentrate on disability issues and advocacy, but just as importantly, for the many others working in a range of development, health and poverty alleviation efforts who are not disability experts, but who need an accessible, easily useable source of information.
This means that policy and decision makers can no longer hide behind the excuse that there is no data; an assumption that has contributed to the regular and routine exclusion of people with disabilities in many development efforts at local or national levels.
The Disability Data Portal now also allows for cross-country comparisons and global overviews of progress and identifies where gaps still exist. Leonard Cheshire is keen to partner and collaborate with organisations with an interest in data disaggregated by disability and the ‘leave no one behind agenda’ to expand the scope of the Portal further.
Work with us
The data already available on the website will be continuously updated as new data sources are identified and generated. We invite you to take a look at the Disability Data Portal, to keep an ‘eye out’ for the addition of more data over the coming months and to continue to make use of this resource over time.
Leonard Cheshire welcomes support and collaboration in expanding country coverage and updating the data sources, ensuring sustainability and usability of the Portal.
For more information or if you are interested in collaborating on the Portal, please contact email@example.com.
Professor Nora Ellen Groce is the Chair and Director at our Research Centre. Dr Ola Abu Alghaib is our Director Global Influencing and Research. Kate Turner is our International Policy Manager.
 Altman, B. M. (2016). International measurement of disability. In Purpose, method and application. Springer International Publishing, Cham.
 For a full report on the project, please see: Leonard Cheshire (2018) Disability Data Review: A collection and analysis of disability data from 40 countries.