8 reasons why citizen-generated data is imperative for people with disabilities

Digest #60

Angeline Akai Lodi is one of seven Data Values Advocates working at the grassroots level to advance the global movement for a fair data future. Angeline is a disability rights advocate in Kenya. This post is part of a series by the first cohort of Data Values Advocates. See preceding posts here.

Angeline’s workshop for organizations of persons with disability sought to mobilize participants to build collective advocacy through participation in data processes. Credit: Angeline Akai Lodi.

In our increasingly digitized world, data has become a cornerstone of decision-making, policy formulation, and social change. We are flush with data from many sources, whether from official statistics, research surveys, or Big Data. However, the most valuable data often comes directly from those it affects the most—the people themselves. Citizen-generated data, or CGD, is particularly important for organizations of persons with disabilities. CGD not only provides a holistic view of the challenges and needs of this diverse community but also fosters empowerment, inclusivity, and more effective advocacy. 

Why data on persons with disabilities matters

Sixteen percent of people globally live with a disability, according to the World Health Organization. The 2019 Kenyan census, however, showed that just 2.2 percent of Kenyans have some form of disability, including 1.9 percent of men and 2.5 percent of women. Kenya’s Ministry of Social Protection, a member of the Inclusive Data Charter, has made a commitment to improve the quality of data on people with disabilities. 

A report by Development Initiatives noted that the 2019 results, though they cannot be directly compared due to changing methodology, represented a sharp drop in disability prevalence from earlier estimates. The report further notes that the impact of under-representating people with disabilities in official statistics is “severe.” Not only would the focus on disability inclusion not receive significant attention on Kenya’s political agenda, but undercounting also negatively impacts the design of policies and programs targeted towards meeting the needs of people with disabilities.

Engaging activists in data advocacy

People with disabilities and the organizations that represent them have a role to play in improving data that represents their needs.

As a Data Values Advocate and Disability Rights Advocate, I’m dedicated to creating a barrier-free society where people with disabilities enjoy their human rights and fundamental freedom on an equal basis with everyone.

My project as a Data Values Advocate this year aimed to advance the rights of women and girls with disabilities through collective advocacy, with a specific focus on inclusive and participatory data processes. The project sought to build the capacity of 20 women with disabilities based on the principles of the #DataValues Manifesto. By addressing the gaps in disability data and promoting the collection of disaggregated data by age, gender, and disability type, it also aimed to improve the representation and understanding of marginalized groups and to advance evidence-based advocacy and informed decision-making.

The project engaged various organizations representing persons with disabilities, including the United Disabled Persons of Kenya, Kenya Network of Women and Girls with Disabilities and other organizations of persons with disabilities. This inclusive approach ensured that diverse perspectives and experiences were part of shaping an agenda for collective data advocacy.

Angeline (standing) with attendees at the workshop. Credit: Angeline Akai Lodi.

Why citizen-generated data matters

Centering people with disabilities in data processes ensures that policy solutions are tailored to the specific needs of the people who are meant to be targets of such efforts. This is why CGD matters.

Here are eight reasons why CGD is of paramount importance for organizations of persons with disabilities: 

1. Amplifying authentic voices: CGD enables individuals with disabilities to share their  personal experiences, challenges, and aspirations directly. This authenticity is vital for organizations as it provides an unfiltered and genuine perspective on the issues faced by their constituents. It helps avoid the biases and assumptions that may arise from data collected by third parties, making advocacy efforts more accurate and relevant.

2. Tailoring solutions: One of the most significant advantages of CGD is that it enables organizations to develop tailored solutions. By directly involving persons with disabilities in data collection, organizations can understand the unique needs of different subgroups within the disability community. This leads to the creation of more effective and inclusive programs, services, and policies.

3. Enhancing accountability: When organizations rely on CGD, they are directly accountable to the people they serve. This accountability fosters transparency, trust, and a stronger sense of responsibility. It also ensures that organizations are addressing the most pressing concerns of persons with disabilities rather than pursuing a one-size-fits-all approach.

4. Enabling inclusive policies: CGD serves as a powerful tool for advocacy and policy change. With access to real-life stories and concrete data, organizations can make compelling cases to policymakers, urging them to create more inclusive laws and regulations. This data-driven advocacy can lead to tangible improvements in the lives of persons with disabilities.

5. Elevating awareness and empathy: CGD has the potential to change societal attitudes towards persons with disabilities. Personal narratives and lived experiences, when shared widely, can foster empathy and understanding among the general public. This, in turn, can reduce stigma and discrimination, making society more inclusive.

6. Developing responsive emergency and disaster plans: In times of emergencies or disasters, CGD becomes invaluable. Persons with disabilities often face unique challenges during such events, and their insights can help organizations develop more responsive emergency plans. This ensures that no one is left behind in times of crisis.

7. Promoting data for sustainable development: The United Nations’ Sustainable Development Goals (SDGs) emphasize leaving no one behind. CGD plays a critical role in achieving this goal, as it helps organizations track progress toward inclusivity and sustainable development. By collecting data directly from persons with disabilities, organizations can monitor the impact of their interventions and adjust strategies as needed.

8. Building stronger communities: CGD can foster a sense of community and solidarity among persons with disabilities. When individuals see that their stories and experiences are part of a larger dataset, it reinforces the idea that they are not alone in their journey. This sense of belonging can empower individuals and strengthen the overall disability community.

Citizen-generated data is not just a tool for organizations of persons with disabilities; it is a catalyst for empowerment, inclusivity, and social change. By embracing CGD, organizations can ensure that their advocacy efforts are grounded in the lived experiences of those they serve, leading to more effective policies and programs that truly reflect the needs of the disability community. As we move towards a more inclusive and equitable society, CGD will continue to play a pivotal role in amplifying the voices and experiences of persons with disabilities, driving positive change and eliminating barriers.