Disability: measurement matters
Authors: None The Lancet Global Health
Journal: The Lancet Global Health (2021)

The World Report on Disability states that 15% of the world's population have some form of disability, making them the world's largest minority group. It is estimated that 80% of people with disabilities live in LMICs. Yet the UN Millennium Development Goals, which were designed to improve the condition of the world's poorest and most marginalised citizens, failed to include any reference to people with disabilities. The 2030 Sustainable Development Agenda specifically mentions “persons with disabilities” or “disability” in relation to education, economic growth and employment, inequality, accessibility of human settlements, and the collection of timely and reliable data. But the shortage of disaggregated data on disability presents a key barrier to achieving any of these goals. To this end, the Disability Data Initiative was launched at the 14th session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities on June 18. A major output of the Initiative—the Disability Data Report—presents analysis of disability questions in national censuses and household surveys between 2009 and 2018. It found that only 84 of 180 countries and 16% of household surveys and censuses under review included internationally comparable questions on functional difficulty. 24% of countries and 65% of datasets lacked any type of question about disability. Highlighting the data gap, the report authors say, “In many countries' national household surveys and censuses, persons with disabilities continue to be invisible.” The pandemic has no doubt impacted the flow of data on disability. A Comment published in The Lancet in March, 2021 described the “triple jeopardy” faced by people with disabilities in the COVID-19 response, including greater risk of poor outcomes from the disease, a higher social impact of measures to prevent the spread of the virus, and reduced access to routine care services. People with disabilities are particularly vulnerable to the impact of lockdowns and disruptions to service provision. A letter published in The Lancet Public Health in August, 2020, titled “Disability and COVID-19: who counts depends on who is counted” called attention to the scarcity of disability data in light of growing calls for a disability-inclusive pandemic response. Reflecting on the lack of surveillance both before and during the pandemic, the authors say, “The disability data gap is more than just a surveillance oversight; social injustices exist that cannot be separated from this lack of information. The lack of data perpetuates the exclusion of disabled people from discussions of health equity and policies that are data driven.” In the absence of concrete data, the pandemic has illuminated the inequality and discrimination experienced by people with disabilities around the world. The COVID-19 Global Disability Rights Monitor Report aimed to assess the impact of national governments' responses to the pandemic on disabled people. More than 2100 people with disabilities and other key stakeholders in 134 countries participated in a survey during the first phase of the pandemic (April 20 to Aug 8, 2020). Notably, the voices of people with disabilities dominated responses (n=863) while very few governments responded, a fact that the authors say alone underlines one of the main conclusions of the study “namely that governments have yet to adopt truly inclusive responses to the pandemic—a situation which must change if our societies are to build back better.” They found four major themes emerged: failure to protect people with disabilities in residential institutions, breakdown of essential community support services, serious harms to under-represented groups among people with disabilities, and lack of access to basic and emergency health care because of disability-based discrimination. While none of these issues are new, the pandemic has certainly made them worse. 13 years after the UN Convention on the Rights of Persons with Disabilities came into force, its guiding principles, including those of accessibility, non-discrimination, inclusion in society, and equality of opportunity, are worth pausing to reflect on. It is time to confront the invisibility and exclusion of people with disabilities. For good intentions to result in good outcomes, it is crucial that national support systems can support everyone. Robust disaggregated data collected with a human rights approach to disability in mind and reflecting the broad range of lived experiences of people with disability are essential to recognise gaps in care and drive policies that will lead to the realisation of the rights of 1 billion people worldwide living with disabilities.