Distributed Care Hubs: Rethinking Disability Care Policy Through Participatory Research
This project introduces the concept of distributed care hubs to describe the informal, relational infrastructures through which disabled people sustain everyday life amid insufficient formal care systems.
Drawing on participatory research we conducted in Bethlehem, Pennsylvania—combining community mapping, ethnographic interviews, and computational analysis—we use drawings and models to show how community-built care emerges through ordinary social interactions, shared spaces, and reciprocal relationships. Distributed care hubs reveal that disability care and everyday sociality are inseparable; they challenge independence-centered policy frameworks by foregrounding interdependence as a universal human condition.
Yet these hubs remain precarious, functioning as compensatory mechanisms shaped by systemic failures that force disabled people into informal survival arrangements. We outline policy implications that differentiate community-controlled care from responsibilities that must remain within formal systems, arguing for infrastructures that support integration rather than substitution.
Ultimately, we demonstrate how community-generated care practices can guide more equitable, interdependent futures in disability policy and design.
Pursuing Healing and Justice through Design Practice
"HUU: Wind is how I speak to this world is an immersive landscape developed in Unreal Engine based on interviews with 22 survivors of sexual violence during the conflicts in Bosnia and the genocide in Rwanda. HUU takes its name from the sound of blowing wind, and the exclamation of relief when one lets go of the heavy burden on their shoulders.
Instead of the trauma itself, the survivors were invited to talk about natural landscapes, and through these landscapes, their long journey to healing. We translated their memories into an archipelago of floating islands, where each ecosystem embodies the memory of a survivor.
As we travel through these islands as a gust of wind, listening to the stories told by survivors, we become the wind, the witness and the messenger that connects the survivors with the world."
