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Global Data Spotlight Needs to Shine on Those With Disabilities
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Global Data Spotlight Needs to Shine on Those With Disabilities

by and Jennifer Robison

Last September amid great fanfare, the 193 member states of the United Nations adopted the Sustainable Development Goals (SDGs). Building on the success of the Millennium Development Goals, the member states set out 17 new objectives, applicable to all nations and peoples, regardless of location (including island states), level of national income or economic development. At the heart of this "plan of action for people, planet and prosperity" is the idea that "no one will be left behind," a principle itself enshrined in the SDGs' Goal 17.

Mindful that what matters is measured, the SDGs require a data revolution to ensure that a light shines on those sections of society that governments and the development community all too often miss. Expressly within Goal 17 is the push for "high-quality, timely and reliable data disaggregated by … race, ethnicity, migratory status, disability [and] geographic location."

Critics of the framework argue that grouping together these hugely important and often neglected sections of society at the end of the goals literally leaves them behind. While the SDGs were being discussed, some groups advocated that each SDG indicator -- poverty, food security, inclusive education -- be specifically disaggregated to ensure that they always remained top of mind, but this suggestion was dropped for purposes of brevity.

Nonetheless, only what gets measured gets done. Therefore, in the language of the SDGs' Goal 3, how is the international community going to "ensure healthy lives and promote well-being for all at all ages" if we have little or no baseline data to determine our starting point in helping the most vulnerable groups? There is reason to wonder how governments and donors are going to prioritize their finite resources and identify the greatest areas of vulnerability or opportunity if policymaking occurs within a data vacuum.

Right now, 15% of the world's population experiences significant disabilities, and 80% of those individuals live in developing countries. That type of information is important, but it tells us little about the daily lives of persons with disabilities. Therefore, governments and donors lack the information they need to "ensure healthy lives and promote well-being for all."

Using the correct indicators is important -- but there are always trade-offs between measurement frameworks when measuring disability. Should the international community engage in yet another counting exercise of persons with disabilities and identify a minority population at risk? Or should we use a framework of human functioning, as advocated by the World Health Organization and the World Bank, designed to identify an individual's abilities or lack of them? Disability, as stated by WHO, is a universal human experience and not the mark of a minority. We all experience chronic conditions, injuries and illnesses to a greater or lesser extent and age with decreasing functioning. Whatever the cause, the presence of a hindering environment leads to the experience of disability. The development community and interested parties must collect the right data to ensure we leave no one behind -- including those who are vulnerable because of their disabilities.

An approach that is intuitive, yet nuanced, and mainstreams disability within data collection exercises is the need of the hour.

Â鶹´«Ã½AV, for example, has begun to participate in the data revolution in collaboration with its partners. Through the "" project, Â鶹´«Ã½AV supported the Food and Agriculture Organization of the U.N. in its validation of the Food Insecurity Experience Scale (FIES) indicator, a global measure of food insecurity that has been endorsed by the Inter-Agency and Expert Group on SDG Indicators and proposed for adoption at the next session of the U.N. Statistical Commission to monitor Indicator 2.1. Through the , Â鶹´«Ã½AV and the International Organization for Migration produced the first global report on the well-being of the world's migrants, a report that speaks directly to the heart of the SDGs. Through their proposed "Migrants' Lives" project, Â鶹´«Ã½AV and IOM aim to replicate this work with a sustained focus on migrant outcomes across the SDGs.

Given the importance of the topic of disability, the urgency for baseline data and the need for support with global harmonization of standards, Â鶹´«Ã½AV is looking to support the disability agenda in a similar capacity. With support from partners, Â鶹´«Ã½AV can use its World Poll data collection infrastructure to allow global leaders to receive their first globally comparable, standardized set of disability data, enabling them to discuss the prevalence, distribution and effects of disability, and create a springboard for action. Regular monitoring will be critical to increase accountability.

Contextual information is important for formulating the plans that improve lives and enhance well-being. A lack of robust and relevant data leaves persons with disabilities, their organizations and advocates, policymakers and funding agencies without the essential tools for implementing action plans and ensuring they are making a difference.

The "great collective journey" of ridding the world of poverty, hunger and inequality must be guided by the principle that nobody will be left behind -- including persons with disabilities.

Author(s)

Andrew Rzepa is a Partner at Â鶹´«Ã½AV.


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