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Data Work in Grassroots Community Organizing for Disability Justice

September 2021 – August 2023

The project’s main goal is to analyze the sociotechnical challenges that arise from the design and use of data-intensive methods for advocacy purposes. The project will advance a core understanding of how data-driven techniques support or hinder community engagement and political organizing in disabled communities. It contributes to long-standing concerns of promoting data literacy and making technologies accessible to historically marginalized populations. In addition to an empirical understanding of the local needs of disabled communities, this work also advances technical knowledge of designing for and with people with disabilities as applied to data science tools.

The current data ecosystem consists of techniques for collecting and analyzing data influencing wide-ranging aspects of our social lives, from healthcare decisions to housing allocations. In these data systems, people with disability are often further marginalized in the increasingly datafied society. In recent years, marginalized communities have been leveraging the same data-intensive methods to combat the adverse effects of big data systems, advocating for under-recognized issues and driving social change. This project examines what happens when traditional data-intensive methods are employed for advocacy efforts, such as when activists mobilize statistics to shed light on issues or create data visualizations to engage big audiences. The goal is to interrogate the limits and opportunities of data science as we know it when applied to disabled communities. I aim to understand data needs specific to these communities and to design and deploy a suite of tools to support their efforts.

About the Digital Futures Postdoc Fellow
Stacy Hsueh is a postdoc in the Interaction Design team at KTH Royal Institute of Technology. She’s interested in exploring how crip wisdom offers critical frameworks for interrogating inequity in data-driven technologies and imagining more just alternatives.

Main supervisor
Marianela Ciolfi Felice, Assistant Professor in Interaction Design at KTH

Karin Hansson, Researcher at Stockholm University

Watch the recorded presentation at Digitalize in Stockholm 2022 event:


Picture of Stacy Hsueh

Stacy Hsueh

Former Digital Futures Postdoctoral Fellow, Postdoc project: Data Work in Grassroots Community Organizing for Disability Justice

Marianela Ciolfi Felice

Assistant Professor in Interaction Design at KTH, Supervisor: Role of data-intensive methods in health advocacy efforts for disabled communities, Former Main supervisor: Data Work in Grassroots Community Organizing for Disability Justice, Digital Futures Faculty
Picture of Karin Hansson

Karin Hansson

Researcher at Stockholm University, Former Co-supervisor: Data Work in Grassroots Community Organizing for Disability Justice