Community-Driven Data for Persons with Disabilities Fosters Inclusion and Representation

By Elizabeth Lockwood

Without data on persons with disabilities, we cannot address the challenges and discrimination they and their representative organizations encounter, and their marginalization increases. Data provide essential information on the status of the rights of persons with disabilities, and identify policy gaps and barriers faced by persons with disabilities to support policymakers to amend existing policies, regulations, and programs to include persons with disabilities fully and equally into society.

No governments are disaggregating COVID-19 data by disability, meaning persons with disabilities are being left even further behind.

This article outlines how organizations of persons with disabilities are advocating for disaggregating, comparable, and reliable disability data – and how they are collecting such data themselves.

Advocacy for Disaggregated, Comparable, and Reliable Disability Data

Organizations of persons with disabilities (OPDs) have an important role to play nationally, regionally, and globally in advocating for the generation of data on their constituencies, whether that is to assess how the UN Convention on the Rights of Persons with Disabilities (CRPD) is being implemented, or how the SDGs are being realized in ways that include persons with disabilities.

This can mean advocating for official data, as well as advocating for and engaging in community-driven data as a complementary source of information representing those most left behind. Community-driven data can inform policies to ensure that persons with disabilities are included and counted, fostering inclusive national SDG implementation.

The role of OPDs and civil society organizations in filling data gaps is increasingly important since official disability data largely are not being gathered to measure the SDGs, with limited available internationally comparable data. Additionally, there is a worldwide lack of official COVID-19 data on persons with disabilities. Research by the Stakeholder Group of Persons with Disabilities on COVID-19 and disability data has found that no governments are disaggregating COVID-19 data by disability. This means persons with disabilities are being left even further behind, increasing inequalities.

To advocate for the needed data, organizations of persons with disabilities and allies have been :

Advocating for disability data in the global indicator SDG framework;
Monitoring continually to ensure disability data are collected and being measured to track the SDGs;
Presenting and sharing key information during meetings of the UN’s Inter-agency and Expert Group on SDG Indicators (IAEG-SDGs), the UN World Data Forum, and the UN Statistical Commission; and
Collaborating with the Washington Group on Disability Statistics, international non-governmental organizations, and the UN system to ensure data are disaggregated by disability across policies and programs.

Direct Efforts to Collect and Disaggregate Data

Organizations of persons with disabilities are also engaged directly in data collection and disaggregation efforts. In 2018, CBM and the International Disability Alliance conducted a survey on OPDs’ experiences with collecting disability-related data. Our findings suggested that the engagement of such organizations in data collection and disaggregation efforts was both critical, and missing.

To address this gap, in 2019, the Stakeholder Group of Persons with Disabilities established a Disability Data Advocacy Working Group to provide a global platform for information exchange, learning and dialogue, sharing of good practices, and collaboration on disability data collection, disaggregation, and analysis. Through the Working Group, many OPDs have shared examples of collecting data about their members. Most recently, in response to the lack of information on how COVID-19 is affecting persons with disabilities, OPDs carried out their own surveys of members’ experiences. The findings of this research are only available from these groups, and have important implications for policymakers.

A qualitative research study carried out by the Stakeholder Group of Persons with Disabilities from May to June 2020 gathered data from leaders of the disability movement on seven themes: living situation, safety concerns, home life and housing conditions, health care, social protection, employment, and COVID-19 disability data. Data were gathered through online interviews, focus group webinars, and working with local OPDs in one region.

We found that most persons with disabilities around the world have been adversely affected by the pandemic in some way with additional or new barriers, including during re-opening processes. The most common barriers include: lack of access to COVID-19-related information; barriers to receiving social protection measures and employment (formal and informal, losing employment first, and accessibility barriers in the virtual working environment); and lack of disability inclusion in COVID-19 response efforts at all governmental levels..

In another example, a report from the World Blind Union based on a global survey carried out from April to May 2020 shows that the top challenges faced by blind and partially sighted people include: transportation and mobility; independence, autonomy and dignity; mental health and well-being; and accessibility (in terms of the physical environment, transportation, information and communications, or facilities and services).

The report also looked at resilience strategies, and found that some key ways of addressing barriers have included: connecting to personal support networks, such as family, friends, neighbors, and trusted guide dogs; getting online – for those with access – to get information; keeping physically and spiritually active and helping others to improve their own wellbeing; using assistive technologies for independence; and carrying out increased advocacy by OPDs and self-advocates.

Community-driven data can be used to assist in COVID-19 response and recovery efforts and also contribute to SDG implementation that includes persons with disabilities. To realize this potential, we recommend that official statistical bodies collect and disaggregate data by disability using the Washington Group’s short set of questions and the Washington Group and UNICEF Child Functioning Module to learn about barriers and to measure disability-inclusive programs, response, and recovery actions.

In addition, governments should:

Involve persons with disabilities and their representative organizations in planning, implementation, and monitoring the CRPD, SDGs, and COVID-19 response and recovery efforts;
Invest in data for disability-inclusive development and to build capacity in stakeholders, especially OPDs, to be better prepared to survey their communities, especially during future emergencies; and
Support communities to gather community-generated data to complement traditional data sources and highlight information that cannot be captured in other ways.

During the UN Virtual World Data Forum, the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, and CBM Global Disability Inclusion are officially launching the very first comprehensive Disability Data advocacy toolkit. This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world.

We hope this resource contributes to the growing global dialogue on the importance of data on persons with disabilities, and provides basic knowledge on data collection, analysis, and use of data for evidence-based advocacy to influence policy and decision makers.

The author of this guest article is Elizabeth Lockwood, Representative at the United Nations, CBM Global Disability Inclusion. This article is written on behalf of the Stakeholder Group of Persons with Disabilities for Sustainable Development and CBM.

This article is part of a series from the Leave No one Behind Partnership (including the International Civil Society Centre (ICSC), Development Initiatives (DI) and IISD). The series assesses COVID-19’s long-term impacts and efforts to make voices heard and count. The next months will be critical to helping those hardest hit.

Funding for this series is being provided by Robert Bosch Stiftung and Economic and Social Development Canada. If you would like to contribute a story from the front lines of leaving no one behind amid COVID-19, please contact Faye Leone (faye@iisd.org) or Stefan Jungcurt (stefan@iisd.org).