What does enacting the world look like for organisms who are not thriving, but merely surviving? What happens when we don’t have access to the activities that are organism-defining? How to curate a life from the edge, when one is cast out of the relational web because of illness or disability? These are questions that Professor Shay Welch is asking herself today, and not because the questions have a theoretical draw, but because, as she shares in this candid conversation, these questions have become the throbbing centrepiece of her daily life. At the time we spoke, Shay was facing a diagnosis of an incredibly rare neurodegenerative disease (3 in one million), and a possible diagnosis of other conditions, and in one year’s time, she saw her life get turned on its head. Exploring this journey together, we discussed the epistemic injustices facing women and marginalized persons in medicine and academia, what is needed to sustain a minimal integrity of the organism when the body breaks down, the necessary conditions for participatory sense-making to happen well between two people, the deeply political nature of any epistemological framework, not least the enactive framework, and the ‘somatic dance,’ as Shay puts it, of trying to figure out how much of the world is moving you and how much of you is moving with the world when the world seems to be moving against you. Shay’s cutting wit and unflinching realism was a refreshing antidote to many of the world’s harrowing displays of sophistry, authoritarianism, and bigotry at the moment, and her observations helped to shed light on how trust in the body, and in first-person experience more broadly, is a powerful seed of resistance for these times. It was not a conversation that attempted to enact any illusion of a happy ending, but where we ended seemed a robust and generous teaching about how to begin making sense with the world, moving closer to solidarity.
More about our guest here.
TW: There is a mention of suicide near the end of this episode.
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