Intersex Care

Intersex Care David A. Rubin (bio) For Dr. Omatayo Jolaosho, in Memoriam Intersex folks—people born with physiological characteristics that do not fit the typical definitions of male and female anatomy—have a notoriously fraught relationship with traditional institutions and providers of care. What passes for care—in the clinic, at the doctor's office, in the classroom, and in the cisheteronormative family unit—is for people diagnosed as intersex nothing more and nothing less than the ongoing violence of corporeal pathologization and medicalization. I use the term medicalization to refer to the figuration of bodyminds as problems that can only be solved by specialized biomedical observation, diagnosis, treatment, and management. In the case of intersexuality, medicalization has produced shame, secrecy, silence, and trauma—especially but not only for intersex people. Critical intersex studies offers intersex, trans, nonbinary, and cisgender people language, frameworks, and tactics for interrogating and rerouting medical regulatory technologies that typically presume binary gender, cisheteronormativity, able-bodiedness, and whiteness as ideal aims. Grounded in the lived experiences of multiply marginalized intersex people, critical intersex studies helps us to rethink the politics and distribution of care in new ways. Since the early 2000s, liberal advocates for medical reform have called for a move to "patient-centered care" and an interdisciplinary team approach to intersex treatment. Simultaneously, they have promoted a shift in terminology from intersex to Disorders of Sex Development (DSD). This approach has largely failed to deliver substantial change, due largely to its complicity with neoliberal individualization and personal responsibilization (Grabham 2007). Moreover, a number of activists and scholars contend that patient-centered care and DSD advocacy re-pathologize people with anatomical sex variations (Davis 2015; Reis 2007), leaving intersex folks in the lurch once more. By contrast, some activists and intellectuals have sought to hold doctors accountable for the harm they have inflicted by demanding vital course [End Page 178] correction. For instance, drawing on the Black radical tradition, the Intersex Justice Project (IJP) calls for reparations, the abolition of unnecessary and nonconsensual surgical and/or hormonal normalization, accountability and education for healthcare workers, and transformative justice in the clinic and beyond. IJP centers the leadership and needs of Black intersex people and intersex people of color in the United States. Adopting an intersectional and decolonial approach to intersex oppression, IJP offers unique insights into the intersections between interphobia, anti-Blackness, structural racism, transphobia, and homophobia under racial capitalism (Rubin 2021). While groups like IJP have made some significant strides in recent years, transforming medical institutions and practices has proved to be a significant challenge. Whereas trans people themselves—working alongside and in partnership with trans-affirmative clinicians, parents, and patient advocates—have developed and disseminated various models of gender affirming care for trans kids and adults over the last several decades, no comparable model of "intersex affirming care" has emerged. Clinicians continue to perform non-consensual pediatric genital surgeries that violate patients' bodily autonomy in metropolitan and some rural hospitals around the globe. Acknowledging the necessity of extending and expanding intersex critiques of biomedicine, this essay asks: how can we reformulate care in ways that disrupt the uneven and unequal distribution of life chances for intersex, trans, and gender-nonconforming subjects? How can we build stronger intersex and trans relations of affinity and mutual aid? How can we expand the range of possibilities what counts as a livable life? Hil Malatino's short, sweet, incisive, and absolutely indispensable pocketbook Trans Care (2020) offers invaluable resources for addressing these questions. I argue that the generativity and capaciousness of Trans Care stems partly from Malatino's theorization of trans care through a critical intersex ethos. I use the term ethos to denote practices "of living otherwise" rather than a set of moral principles (5). A critical intersex ethos is a practice of living and reading otherwise that draws its epistemic strength, ethical capacities, and "resistance to regimes of the normal" (Warner 1993, xxvi) directly from the lived, embodied experiences of intersex people. Diagnosed with partial androgen insensitivity syndrome as an adolescent, Malatino grew up in a bodymind that resisted biomedicine's effort to rhetorically and surgically recode biology as binary. Growing up in a lower-class family...