How Pakistan is championing inclusive data
Digest #80
I’ve witnessed firsthand the long and challenging road we at Sightsavers in Pakistan have traveled with our partners to advocate for disability-inclusive data, and one moment stands out for me. Several years ago, I attended a workshop on the upcoming national census. I remember feeling a mix of hope and frustration: while we all recognized the importance of accurate data for planning and policy-making, the conversation was dominated by discussion of the complexities and challenges of including people with disabilities in the data collection. To shift the focus, I shared a story about a young boy named Ahmed, who has a visual impairment. His family struggled to access basic essential services because there was no reliable data to highlight the needs of children like him. Without specific data on disabilities, Ahmed’s story—and countless others—would remain unheard, leading to continued marginalization.
After that workshop, we worked tirelessly with our partners, conducting awareness campaigns, organizing training sessions for data collectors, and advocating for the inclusion of disability-specific questions in the census. It was a long process, filled with setbacks and challenges. However, our efforts began to bear fruit and following our advocacy, the Supreme Court notified the Pakistan Bureau of Statistics (PBS) to incorporate our recommendations into its planning. Fast forward to the recent national census, I’m proud to say that, for the first time, there were specific questions designed to capture information about disabilities. This is a significant milestone, not just for Sightsavers but for the entire disability community in Pakistan.
Data advocacy is creating impact for the people of Pakistan
The inclusion of disability data in the Pakistan Social and Living Standards Measurement Survey, the Labour Force Survey, and the 2023 National Population Census for the first time is a moment of great pride for all of those who have been involved. I should not undersell the length of this process, with court hearings taking place over three years before it was ordered that the government must include people with disabilities in surveys and the upcoming census. The court also asked PBS to form a technical committee of relevant experts for further guidance on how to develop disability inclusive tools. Sightsavers, working jointly with two other organizations for people with disabilities (OPDs), were requested to lead this committee, enabling further influence on ensuring that inclusive data collection methods and priorities were at the heart of national surveys.
This action means we have a comprehensive understanding of the number of people with disabilities in our country for the first time. We are already seeing impact of this data collection including government resource allocations for inclusive education in the primary and secondary level education system, as well as the establishment of Pakistan Business and Disability Network to enhance the employment and entrepreneurial opportunities for youth with disabilities. Inclusive data practices are clearly essential in identifying the challenges that people with disabilities are facing and enabling the government to develop targeted interventions aimed at improving their quality of life. This is key to the core sentiment of Agenda 2030: to Leave No One Behind.
How we can scale this impact
These successes in Pakistan have given me hope for how data can improve the lives of some of the most marginalized people. Progress has been hard won and long fought for, but I believe that what we learned through this process can be applied to drive progress on other development challenges and in other countries:
Consultation is key - Wider consultation is crucial for developing disability-inclusive data systems, and ensuring that the experiences of the people represented by the data are central to the process. Additionally, people with disabilities are not a homogenous group and engaging a diverse range of stakeholders helped identify both specific and shared barriers faced in data collection. This collaborative approach fostered the development of methodologies that are not only culturally relevant but also tailored to the unique needs of varied disability groups.
Sensitization is crucial - People need to understand the importance of collecting disability inclusive data and representative data more widely. Sightsavers worked with OPDs and other stakeholders to ensure the agencies responsible for the surveys recognized the need to collect, analyze, and use inclusive data. It enabled enumerators to appreciate the nuances of disability and administer the questions with sensitivity and accuracy, which is vital for obtaining reliable data. Our efforts fostered familiarity with the Washington Group questions and helped enumerators recognize the importance of inclusive language and the need to create a comfortable environment for respondents. These efforts reduced the stigma often associated with disability and captured better quality data for use by the government.
Importance of specialist training - In Pakistan’s last population census there was a lack of training for data collectors, which caused huge under-representation and underestimation of disability related data. Using the Washington Group Questions requires precision in how the questions are administered and responses are interpreted, and even minor mistakes or wrong use of words in probing and analysis can undermine the tool greatly. Well-trained data collectors are better equipped to clarify questions and address any misunderstandings, leading to more accurate and comprehensive responses.
Impact from advocacy takes time: time to build those essential networks of partners, time to develop capacity, and time to build salience around why inclusive data is so important in improving the lives of the most marginalized and why including those people in policy making is crucial for effective service development. This last point has been central to all of our efforts. Ensuring that those represented by the data have an opportunity to engage with the survey development and provide expertise may seem basic, but it is often overlooked by governments and those developing programs aimed at supporting marginalized communities.
For us in Pakistan, the inclusion of disability-related data in national statistics represents a significant advancement in the fight for equity and inclusion. As Pakistan continues to move forward, it is essential to build on these successes and ensure that the needs of people with disabilities are prioritized in policy-making and resource allocation. By fostering collaboration among stakeholders and maintaining a commitment to inclusive data, Pakistan can pave the way for a more equitable development agenda where there are opportunities for the most marginalized to thrive.
This journey has taught me that change is possible, but it requires persistence, collaboration, and a collective commitment to ensuring that every voice is heard.
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