Blog: New disability data portal to provide global data on people with disabilities

Giacomo Pirozzi, Panos Pictures

Oct 2018
01/10/2018

By Professor Nora Ellen Groce & Dr Maria Kett, Leonard Cheshire Research Centre, UCL

As memories of the long hot summer begin to fade, one particular day in July stands out - that of the first Global Disability Summit, co-hosted by the UK Government, the Kenyan Government and the International Disability Alliance. The Summit offered a unique opportunity for the global community to come together and publically announce our commitments to disability-inclusive development. The key themes for the Summit - inclusive education, stigma and discrimination, technology and innovation, and economic empowerment – provided a useful framework to encourage discussion and debate. The day also provided a chance to reflect on both how far we have come, and how far we have yet to go with these commitments. What has changed in the few months that have passed since that warm sunny day in London?

Given the specific areas of focus for Leonard Cheshire, we were particularly pleased that the themes of the Summit included a strong focus on Inclusive Education, including the launch of the Inclusive Education Initiative. This Initiative brings together existing and new commitments, and is underpinned by evidence from research, including our own. The Initiative grew out of a workshop held in Cambridge in April, hosted by the Impact Initiative and the REAL Centre and attended by many of those who made commitments, where the conceptual framework was developed. In addition, a new Partnership Forum is being set up which will support the design and development of mechanisms and systems to hold those who made commitments to account.

One of the challenges highlighted by many of those attending the Summit was the lack of data around disability issues.  The DFID funded Disability Data Portal undertaken by Leonard Cheshire in conjunction with DFID is an attempt to rectify this, and will provide a significant source of information for researchers, policymakers and other stakeholders. The Portal provides an easily accessible ‘snapshot’ of disability data for those working on disability inclusion in areas such as government, inclusive education, international development, global health and human rights.

The need for good disability data could not be more timely. Until recently, the collection and analysis of disability statistics has been a low priority at both national and international levels, and statements about the needs of children and adults with disabilities were often qualified by the fact that the numbers of people with disabilities affected or to be reached were largely unknown. Many government officials and international development professional still believe that there is little data on disability available and use this supposed lack of data to justify why disabled populations should not be included in many development efforts. 

However, a growing body of disability-related data has appeared over the past decade, in large part in response to the UN Convention on the Rights of Persons with Disabilities’ requirement that disability data  be collected and in part reflecting the Sustainable Development Goal’s call to ‘leave no one behind.’   Improved methodologies, particularly the Washington Group Questions has also made efforts to collect and analyse such data far easier and much more cost-efficient.

Unfortunately, much of this data remains scattered and difficult to access.  Censuses and surveys, even in the same regions or within the same country often contain disability data collected using different instruments and analytical approaches, inhibiting comparisons over time and across geographic areas.  One consequence of this is that there have been few attempts to bring together disability data, creating barriers for national planning, international comparisons and global understanding of both progress and gaps around disability-inclusive development efforts.  

Our new Disability Data Portal project is intended to address this barrier by providing an open access, easily accessible ‘one stop shop’ for data on people with disabilities.   

The Leonard Cheshire team, working with a group of experts in global disability data research with guidance from a distinguished international advisory board, has pulled together and analysed disability data from dozens of censuses, surveys and other data collection instruments at national and regional levels.  We have begun with a review and analysis of disability data from 40 countries using 16 SDG-related indicators focusing on key themes from the Disability Summit:  Inclusion in Education; Economic Empowerment, Technology and Innovation, Stigma and Discrimination.  The Portal will be updated and expanded over the coming months to include more countries and a larger number of SDG-related indicators.   

The Portal, which went live on-line during the Summit itself, provides resources to be used widely by international agencies, governments, civil society, researchers and advocates.  It is our hope that a large number of policy makers, practitioners, researchers and advocates will make use of the portal and we invite readers of this Blog to take a look, and to check in regularly as we add to the site over time.  The Portal is designed to be a collaborative effort – and we would welcome input from colleagues and sister organisations as we move forward, ensuring sustainability and usability of the Portal.

The success of any international meeting is often difficult to judge in the immediate aftermath of the gathering itself.   The impact of new ideas, innovative collaborations and pledges for new outreach efforts and initiatives often can only be fully assessed over time.  Certainly, the strong emphasis in this Summit on new collaborations and commitments holds the potential to generate a significant leap forward for disability inclusion in international development efforts in line with SDG goals and targets.  We look forward to seeing and contributing to the changes that this unique high level Summit might generate.   And as researchers we eagerly anticipate the contributions that research and evidence can play in keeping disability on the global agenda.

 

The Impact Initiative blog posts are either from individual researchers or from major research programmes. Some of the blog posts are original source and are written by researchers and experts connected to the two research programmes jointly funded by ESRC and DFID: the Joint Fund for Poverty Alleviation Research and the Raising Learning Outcomes in Education Systems Research Programme. Other blog posts are imported from related websites and programmes. 

The views expressed in these blogs reflect the opinions of each individual and may not represent the Institute of Development Studies, the University of Cambridge, ESRC or DFID.

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