# **Invisible or Mainstream? Disability in Surveys and Censuses in Low- and Middle-Income Countries**

Sophie Mitra, Wei Chen, Justine Hervé, Sophia Pirozzi, Jaclyn Yap

# 1. **Introduction**

The Sustainable Development Goals (SDGs) endorsed by the United Nations member states have the mission to “leave no one behind.” Monitoring the SDGs is critical to achieving this goal. The Inclusive Data Charter signed by the World Bank and other global data partners in 2018 aims to mobilize political support in order to improve the quality, quantity, availability, and financing of disaggregated data to support the 2030 United Nations Agenda’s ambition of leaving no one behind. Article 31 of the United Nations Convention on the Rights of Persons with Disabilities **(** CRPD **)** provides that <mark>“States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”</mark> (United Nations 2006 <mark>). In addition, it stipulates that “the information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties' obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.”</mark> Achieving the SDGs and rights for persons with disabilities as per the CRPD requires quality and policy-relevant data on a range of outcomes that are collected and presented by disability status, based on concepts that are in line with a human rights approach to disability, and reflective of the diversity of people with disabilities and various aspects of their lives. This paper assesses the extent to which household surveys and censuses between 2009 and 2018 have included disability questions. It analyzes the types of disability questions implemented during this period, with the particular aim to identify surveys and censuses that can potentially be used to produce SDG or CRPD related indicators disaggregated based on disability status using internationally tested and comparable disability questions.

Disability has been a drop in the ocean of international development work. This lack of attention to disability is perhaps not surprising. There are confusions and misconceptions on what disability is and the scale of the phenomenon. The term “disability” itself is elusive. One cannot simply ask in a survey if anyone in the household has a disability as individuals and cultures may have different understandings of disability. In general, respondents tend to report only extreme cases of impairments (e.g. blindness), leaving out severe or moderate cases. They may also not report a disability due to stigma and older people may also not think of themselves as having a disability, but as being old. Disability is therefore not a simple characteristic. It can be defined and measured in different ways, for instance in medical terms or as resulting solely from barriers in society (Goodley 2016, Mitra 2018).

While the lack of data on disability has long been noted (e.g. WHO-World Bank 2011), the Disability and Development Report (United Nations 2019) notes that “National disability 2