This dissertation describes an ethnographic project exploring pain, communication, and disability. Assessing and relating to pain is a fundamental endeavor, not just of Western biomedical practitioners, but of any type of caregiver, and it is a task that is rendered even more difficult when pain is experienced by people who do not have access to words. The DisDAT, or Distress and Discomfort Assessment Tool, is a form developed in the UK designed to allow clinicians to avoid, or at least mitigate, distress among nonverbal patients by documenting their personalized distress and contentment cues. I conducted my primary ethnographic research for this dissertation embedded within and alongside a clinical team at my field site as they seek to facilitate the adoption of the DisDAT at their hospitals. In addition, I used creative autoethnographic photography to explore the resonances between my personal experiences of pain and disability and those of my interlocutors. Ethnographic methods used in this study included qualitative interviews, content analysis, participant-observation, and autoethnography.

This ethnographic project takes the DisDAT tool itself as a starting point to explore several distinct but nested aims. I ask what the goals and difficulties of the DisDAT implementation project can reveal about bureaucracy and the pursuit of quality in the U.S. medical system as a while. I also explore how family members and professionals understand signs of pain or distress and translate them into the “vocabulary” represented by the DisDAT, along with how kinship and the work of care are constituted through the form. Finally, I use autoethnography to examine what claims can be made about the universality versus individuality of both pain and disability and the communication of pain experience through artistic work.

These are complex theoretical questions, and also urgent pragmatic ones that caregivers must seek to answer every day. By engaging ethnographically with medical caregivers and family members of patients who are involved in the DisDAT project, I hope to assist them in answering these questions for themselves, as well as contribute to the evolving anthropologicalliterature on this topic.