Entire body-minds, communities, cultures are squeezed into defective. And then that single blunt concept turns, becoming defect. Bullies hurl it as an insult. Strangers ask it out of curiosity. Doctors note it in medical files. Judges and juries hear it in testimony. Scientists study it as truth. Politicians write it into policy. Defect and defective explode with hate, power, and control.
In his book Brilliant Imperfection: Grappling with Cure, Eli Clare treats cure as an ideology to be critiqued and dismantled. Brilliant in its analysis, rich in its provocations, and refreshing in its honesty, the book exposes how cure as an ideology serves to judge some body-minds as normal and others as abnormal; some as valuable and others as disposable; some as healthy and others as unhealthy (69). Yet, like all our favorite poets, Eli Clare provides no easy answers. He doesn’t try to work around the mess. He works in and through the mess, with little desire to conquer or overcome it. In his own words, Clare finds himself “inside a knot of contradictions. Cure saves lives; cure manipulates lives; cure prioritizes some lives over others; cure makes profits; cure justifies violence; cure promises resolution to body-mind loss” (xvi).
Clare points out the many tensions and complexities involved when grappling with cure. For example, while Clare is highly critical of the notion of “overcoming” disability (since it conveniently assumes that one’s body-mind conditions can be defeated or transcended through individual hard work), he recognizes that “disabled people overcome specific moments of ableism.” That is, they “exceed low expectations, problem-solve lack of access, avoid nursing homes or long-term psych facilities, narrowly escape police brutality and prison” (10). To take another example, Clare wonders how disability activists can find a way to condemn oppressive environmental injustices “without feeding the assumption that your body-mind is tragic, wrong, and unnatural.” In other words, “how do we witness, name, and resist the injustices that reshape and damage all kinds of body-minds—plant and animal, organic and inorganic, nonhuman and human—while not equating disability with injustice?” (56).
To critique the ideology of cure is not to critique those who want their comfort increased, their chronic pain alleviated, or their lives prolonged. “The fact that many individuals desire cures, do not want to be disabled, or suffer a great deal from disability is not the issue,” writes Sunaura Taylor, an activist for disability and animal rights. “What needs to be challenged is the ingrained and ubiquitous assumption that these things mean that disability is objectively undesirable and that such feelings are the only reasonable response to disability.”2 Again, for Clare, it is not that no significant benefits exist by eliminating illnesses, so-called “defects,” and certain body-mind differences. It is that these forms of eliminations also perpetrate violence, “routinely turning body-minds into medical objects and creating lies about normal and natural.”3 “Simply put,” Clare writes, “diagnosis wields immense power. It can provide us access to vital medical technology or shame us, reveal a path toward less pain or get us locked up. It opens doors and slams them shut.”4 To “grapple” with cure, then, is to live in these tensions, not avoid them; to admit these contradictions, not overcome them. As Clare writes in his response to one of the contributors below, “I believe that to find liberation we need a body-mind politics as complex and contradictory as our body-minds themselves.”
In the symposium’s first essay, disability rights activist Alice Wong reflects on her lifelong struggle with the medical-industrial complex and the ideology of cure. In an experience all too common in religious circles, Wong remembers being taken to a spiritual retreat at the age of eleven in an attempt to have her muscular dystrophy to be healed or “prayed away.” Having not been “cured” of her disability at the spiritual retreat, Wong didn’t experience too much disappointment. “I look back with deep empathy for my younger disabled girl self,” she writes. “Most of my desire for cure/healing was due to frustrations with accessibility, social isolation, discrimination.” In the remainder of her essay, Wong discusses the implications of Brilliant Imperfection for emerging genetic technologies. Her main worry concerns the violence such technologies perpetrate on our body-mind differences. “This is the elimination of our wisdom, culture, community, and identity,” she writes. Wong concludes her reflection by amplifying the many ways in which disability rights activists are resisting the ideology of cure and the many processes, institutions, and systems that “want to eradicate us.”
Karen Hanna, our symposium’s second contributor, argues that Brilliant Imperfection, while admittedly a book about a lot of things, “is also a book about listening.” Pointing to the many pauses, uncertainties, and hesitations with which Clare critiques the ideology cure, Hanna finds this vulnerability and humility essential to Clare’s honest, perceptive analysis throughout the book. Hanna finds especially compelling how Clare is able to connect ideologies of cure and healing to state violence. Thinking specifically about “slave fugitives, undocumented immigrants, and refugees,” Hanna observes: “All of their bodies have historically been policed, barred, and terminated using similar logics of difference, moral servitude, and capitalist productivity.” Among the questions Hanna asks of Clare are the challenges and possibilities of community among disabled people. “Must we be sick in order to experience intimate forms of community?” Hanna wonders. For those, like Hanna, who experience regular chronic pain, it is of course imperative to create intimate communities of care, vulnerability, and resistance. Yet at the same time, she asks, “How do we on a practical level build these spaces when we are tapped out everyday, spoonless, and/or borrowing spoons from future days?”
In the symposium’s third essay, Leonard Curry draws connections between Eli Clare and W. E .B. Du Bois by claiming that both have, in the best sense of the term, “a genre problem.” He argues that both share “an aesthetic orientation towards the ‘dedisciplinized,’ the poetic, the mosaic.” By imagining what types of conversations, questions, and coalitions might form within black studies and critical disability studies, Curry finds creative connections by reading Clare alongside Du Bois. For instance, after referencing Du Bois’s assertion that certain “powers of body and mind have in the past been strangely wasted, dispersed, or forgotten,” Curry writes that he “cannot help but think of Clare’s grappling ‘body-mind,’ who rightly refuses the heroic or genius, but fights no less against the forces of death for the sake of participating in the world.” What Curry can only describe as a beautiful brilliant mosaic, Clare’s book provides “an example of how you discipline your body-mind so that you think and write towards the loving interdependence of all of beings. Clare empathizes, he sits with contradiction, and he loves.”
Meredith Minister engages Eli Clare’s book after recently being diagnosed with stage IV colon cancer, a cancer that one physician has described to her as “incurable.” Minister notes that, because of their different diagnoses, she and Clare have “different relationships to cure.” In other words, living without a cure, she observes, is quite different than living with a terminal illness such as late-stage chancer. While Clare pays great attention and is sensitive to the pain of those with cancer and chronic pain, Minister invites us to consider what an anti-cure politics would look like around cancer treatment. “To take up Clare’s anti-cure politics around cancer would mean to challenge the business of curing cancer,” she writes. “Doctors and researchers seem to think that curing cancer seems to be only a matter of time. My question is how we live in the meantime.”
In our final essay for the symposium, Petra Kuppers not only engages but dreams with Eli Clare. “Eli’s gift,” Kuppers writes, “is to bind experiences, longings and desire to a deeply felt sense of the injustices, exclusions and unmarked sites of violences that surround us.” Chronicling her experiences with aqua-therapy and other sites of care and healing, Kuppers examines what Brilliant Imperfection might offer for people who, like her, “are mosaicking [their] way around the water cure.” While language of “healing” is no doubt problematic in an anti-cure politics, Kuppers reimagines healing “within a framework of wellbeing and maintenance, not of luxury and cure.” In doing so, she details the many ways that warm waters may heal, not just in the traditional biomedical ways, “but in ways that bind people to land and to one another.” Kuppers’s meditation revolves around how she and her loved ones came to dream and heal differently, and, ultimately, to accept Eli’s invitation to “come sit with me. Let this mosaic that began in conversation spark a hundred new conversations.”