Terms of Care: Designing for Participation in Data Governance by Disability Communities

원문 초록

Improving disability representation in AI-generated media requires community-specific datasets, yet openly sharing such data can expose communities to misuse, decontextualization, and exploitation. We examine how disability communities can participate in dataset governance through context-sensitive licensing. Working with three disability advocacy organizations, we conducted semi-structured interviews, an educational webinar and modular license activity to promote community participation in data stewardship. Our findings show that governance in these high-context communities relies on organizational memory (especially situated harms); both formal authority and informal relational practices; communication; and resulting trust. The modular license activity made organizational data choices more accessible and values-led, allowing communities to adapt Creative Commons clauses to express permitted uses, sector-specific restrictions, safeguarding requirements, and commitments to respectful representation. Yet, concerns remain about monitoring and enforcing appropriate data use. We contribute (1) an empirical account of governance tensions, (2) a practical modular approach, and (3) design implications for AI data platforms that support relational, context-sensitive governance beyond standardized, one-size-fits-all frameworks.