Caring Beside: Metaphors of Solidarity at the Bedside

This week in North Philly Notes, James Kyung-Jin Lee, author of Pedagogies of Woundedness, writes about “the horizontal ethics of care and politics of resistance” as well as the power that can come from the person lying on the bed.

            

In the epilogue of Pedagogies of Woundedness, I cite the opening scene of Johanna Hedva’s “Sick Woman Theory,” in which they describe listening to the sounds of a 2014 Black Lives Matter protest taking place outside their apartment, while Hedva was consigned to a bed because of a chronic illness: “Attached to the bed, I rose up my sick woman fist, in solidarity.” They then wonder what role ill/disabled people might play in revolutionary activity: “How do you throw a brick through the window of a bank if you can’t get out of bed?” Such a question resonates with a corresponding image that Leah Lakshmi Piepzna-Samarasinha conjures in her essay “Crip Superpowers,” that implores her readers and fellow activists to imagine, “We can community-organize flat on our ass in bed—as what the movement needs most.”

The horizontal body in space and time is the prevailing image of the patient consigned to the hospital bed that animates so much of the crucible of experience that animates physician memoirs, the contrast between the standing, able-bodied doctor hovering over, caring, surveilling, and enacting on the prone one in need of care and thus submitting to such diagnostic colonization. It is this asymmetry of power exemplified in bodily position that motivates both Hedva and Piepzna-Samarasinha to see the bedridden Asian American sick woman as nonetheless agentive. Here, I also take to heart Mel Chen’s meditation on Piepzna-Samarasinha’s insistence on a politics enabled “flat on our ass in bed” by their subtle but trenchant critique of the most widely used phrase to demonstrate solidarity with a cause or community or condition: “The grammar of ableist liberatory fervor is succinctly captured, for instance, in the widespread use today of declamatory campaigns that urge one to metaphorically ‘stand with’ various populations or politicians. Such a metaphor is constructed on the figurative imagining of a literal standing. The question becomes what might it mean to ‘stand with’ a figural group, when standing for wheelchair users, or those chronically ill ‘flat on our ass in bed,’ cannot readily invite such ‘politically aligned’ embodied action.” At the time of this writing, my social media feed is filled with posts that stand with the people of Ukraine, stand with LGBTQ+ kids in Florida and trans children in Texas, and of course all through the pandemic we were ostensibly standing with health care workers toiling in the desperate days and weeks of the worst of the COVID pandemic. I suppose that the lack of shortage of people standing with others is a small testament that wounded, vulnerable people receive some modicum of compassion that isn’t tethered to market forces or transactional expectation.

But Chen’s, Hedva’s, and Piepzna-Samarasinha’s insistence on a horizontal ethics of care and politics of resistance have hit home in ways that exceeded my imagination once the final draft of Pedagogies of Woundedness was locked. The following is a story which I have permission to disclose: a year ago, our older teenage daughter attempted suicide and in doing so revealed that she had been suffering from severe mental illness and associated trauma for years, unbeknownst to me and her mom. What followed was a long flight of various treatments, both outpatient and residential, and our family’s baptism into the world of mental health care. There have been and continue to be moments of crisis that punctuate periods of relative mental and emotional stability, and some rare moments of happiness for my daughter, and for the other members of the family. Early on, I clung to a restitution narrative, but we’re late into this story and I recognize now that my daughter is living a different genre. Early on, I stood over her bed desperately wishing she could join me, despairing that the aggressivity of her depression prevented her from even remaining conscious for hours at a time. Over time, I came to understand that standing with my daughter when she couldn’t get out of bed wasn’t all that much different from the physician’s diagnostic colonization of his patient.

So I’ve tried to shift my body and my metaphor to align with where my daughter is on any given day. On really tough days, as she lies in bed, I’ll sometimes lie on the floor and listen to the quiet sounds of her breathing. At moments when she is able to sit at her desk and is willing to let me into her space, I’ll pull up a chair: sometimes we sit face to face and at others side by side, as if we’re facing the world together. Stories of illness and disability, and the politics and ethics that emanate from these stories, the power that can come from the person lying on the bed, have taught me that there is and must be always more room to imagine solidarity with the vulnerable. Nowadays, I will only stand with people, like my daughter, if they want to stand, and if they give me permission to rise with them, if they let me take their hand into mine.

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