Disrupt & Innovate

Persons with disabilities and data inclusion

7th July 2021 by Dr. Elizabeth Lockwood, Dr. Mohammed Ali Loutfy, Sally Nduta

This blog post is part of our LNOB Knowledge Exchange Programme (KEP). Elizabeth Lockwood, Mohammed Ali Loutfy and Sally Nduta explain why organisations of persons with disabilities must be engaged in data collection, analysis, and use of data for evidence-based advocacy to influence policy and decision-makers.

Overwhelmingly, persons with disabilities remain invisible in statistics and as a result existing and new barriers that persons with disabilities face are, once again, not addressed. This invisibility has been particularly evident in the COVID-19 pandemic with dire consequences for many persons with disabilities around the world. 

Data on persons with disabilities are needed so we understand the real situation of persons with disabilities, to identify gaps that are not addressed through policies and to provide examples of successes. This is not only beneficial for evidence-based advocacy, but also to influence decision-makers and convince them on the themes where the most urgent actions and steps must be taken at national, regional and global levels. This is the beginning and foundational to all other efforts.

Gathering qualitative data and engaging in participatory research with persons with disabilities and their representative organisations are incredibly important and can complement existing quantitative data sources. This is especially important since community-driven data with representative organisations of persons with disabilities can fill the gaps that official statistics cannot from surveys and censuses alone. In fact, community-driven data is particularly relevant for measuring the SDGs for persons with disabilities since most SDG global indicators are falling behind in measuring progress for persons with disabilities, again, leaving persons with disabilities behind. 

In response, the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, Disabled Peoples’ International, and CBM Global Disability Inclusion produced a comprehensive disability data advocacy toolkit to address the importance of organisations of persons with disabilities (OPDs) to be engaged in data collection, analysis, and use of data for evidenced-based advocacy to influence policy and decision-makers. 

The toolkit was created after feedback and requests from persons with disabilities and their representative organisations from all over the world and building on the collaboration of the International Disability Alliance and the International Disability and Development Consortium. 

The toolkit highlights two particular aspects of the data journey, starting first with the need for data to understand the situation of persons with disabilities, identify gaps that are not addressed through policies, and provide examples of successes. The second aspect is once the data exist. It is crucial to understand how to analyse, use and trust data for creating advocacy messaging. This is both to protect the integrity of advocates and to ensure that the change sought is based on an understanding of the situation and what works. The toolkit includes case studies in which organisations of persons with disabilities were involved in both aspects mentioned above, including a case study on the LNOB Partnership.

There is no excuse not to have data on persons with disabilities or to include OPDs in data collection and interpretation efforts. Persons with disabilities and their representative organisations are the experts on issues affecting them and are generating community-driven data to complement official statistics. With the toolkit’s guidance, persons with disabilities and their representative organisations can respond in a highly professional manner to data needs. 

An excellent example of OPD-led data advocacy was the OPD-led advocacy that led to the Washington Group (WG) short set of questions being included in the 2019 census in Kenya.

The Kenya Population and Housing Census was carried out in August 2019. To use the WG short set of questions is something that the disability movement in Kenya had advocated for with the hope that it would ensure the availability of quality data that can inform interventions. However, it took diverse interventions for this to happen. 

Firstly, there was intense training of officers from the Kenya National Bureau of Statistics (KNBS) on the importance of using the WG questions to collect disability data. Secondly, and importantly, was the involvement of OPDs in this process. Through United Disabled Persons of Kenya, persons with disabilities went through training on disability data, including the WG module. In addition, the International Disability Alliance through its Bridge CRPD-SDGs’ training continued to strengthen the capacities of leaders in the disability sector on advocacy for appropriate disability data.

By these empowerment processes, both for statistics officers as well as for OPDs, the WG questions were included in the 2019 census. From the census statistics, what has been published so far includes distribution of the population aged five years and above by disability status as well as distribution by type of disability. A disability monograph shall be published that shall look at various indicators such as access to education and employment. 

Through a framework of continuous engagement of OPDs and KNBS, OPDs are now members of a Technical Working Group on Disability Data which, going forward is going to play a key role in the availability of disability data in Kenya. Currently, we are engaged in discussions around having a disability survey as guided by the disability movement, specifically to collect data on the situation of persons with disabilities.

There are various efforts from partners in Kenya on ensuring that there are good data on disability. Whereas at present there are various gaps on getting disaggregated data, we hope that the collaboration with partners, including the KNBS and OPDs, in a spirit of goodwill, will ensure that going forward there are good, quality data. 

Dr. Elizabeth Lockwood

CBM Global

Dr. Elizabeth Lockwood works for CBM Global Disability Inclusion and is the CBM Representative at the United Nations. She focuses on developing advocacy strategies to raise awareness, build capacity, and lobby for the rights of persons with disabilities at the UN level in relation to the UN Convention on the Rights of Persons with Disabilities, the Sustainable Development Goals, and disability inclusive development.

Dr. Mohammed Ali Loutfy

Disabled People’s International (DPI) Executive Director.

Disabled People’s International (DPI)

Dr. Mohammed Ali Loutfy is the senior advisor on capacity building and advocacy for the Global Initiative on Inclusive ICTs (G3ICT). Dr. Loutfy is also Disabled People’s International (DPI) executive director. Since 2016, Dr. Loutfy has been the Representative of Disabled Peoples’ International (DPI) at the United Nations, where he co-chairs the Stakeholder Group of Persons with Disabilities for Sustainable Development.

Sally Nduta

Programmes Manager

United Disabled Persons of Kenya (UDPK)

Sally is a disability rights champion with over ten years of experience in the disability sector. Before joining UDPK, she previously worked at the African Union of the Blind (AFUB) as a Programme Coordinator. She is experienced in managing capacity building and advocacy programmes aimed at empowering persons with disabilities and their organisations. She has experience working with multi-stakeholders, including government departments and other non-state actors. She has actively participated in programme development and implementation using rights-based and human rights approaches. She is interested in disability-inclusive policy, planning and execution, supporting the institutional strengthening of persons with disabilities, collating feedback on advocacy activities, supporting follow-up, and facilitating learning.