Brilliant Imperfection
By
2.25.19 |
Symposium Introduction
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.
—Eli Clare1
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.”
3.4.19 |
Response
Attentiveness to Exceptional Bodies
In Brilliant Imperfection: Grappling with Cure, Eli Clare conveys to readers that life is replete with contradictions without clear answers. Through streams of consciousness, Clare displays a range of emotions, including shame, anger, hope, grief, mourning, joy, fear, and longing, paradoxically representing the messiness of disability with clarity. For instance, Clare’s reflection on care technologies offers the reminder that “all these realities . . . exist at the same time—we fear shifts, we resist them. We welcome them. We need them” (94). Indeed, living disabled is complicated.
A Book on Listening and Critical Questions
Brilliant Imperfection is about disability and “isms,” revealing the interconnectedness between gender, racism, ableism, fatphobia, settler colonialism, climate change, and other ostensibly disparate forms of violence, At the same time, it is a book about listening. While the unapologetic directness of Clare’s activist treatise commands attention, it is in Clare’s places of pause and uncertainty that I find him most compelling. For example, when Clare realizes that his anti-cure politics (i.e., “our bodies are fine as we are”) do not attend to the reality of friends who battle cancer, he pauses to rethink his position. As he concludes that his dictums do not fit all “body-minds,” he wrestles with the possibility that no one solution may address the needs of disabled people, as disability itself represents a heterogeneous array of bodies. In recognition of this heterogeneity, Clare insightfully inquires, “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). I appreciate this quote because he suggests we separate the body-minds—the humanity—of disability from its harms, which society tends to conflate as one.
Still, Clare illuminates important links between disability and harm. Raising the critical question “When are those moments and locations of disability and chronic pain unnatural—as unnatural as war, toxic landfills, childhood abuse, and poverty?” Clare is cognizant of how social factors and environmental injustices produce (1) illness and disability, (2) conditions that make disability and chronic illness difficult to bear, and (3) bodies that society considers “abnormal” and not worth living within (53). By shifting attention to social forces and systems of power that decide what and who is normal, Clare resists a discourse that frames disability and illness as injustices in themselves. For example, in sections about Carrie Buck and Terri Schiavo, Clare observes that the state has historically applied similar beliefs about “trouble” onto bodies, systematically valuing some bodies over others. By linking racialized logics of normalcy with the logics of ableism, Clare illuminates the state’s categorization of difference to oppress people of color and those disabled, favoring white able bodies that support white supremacy and capitalism. Buck’s and Schiavo’s stories led me to consider parallels between their mistreatment by the state and the state’s simultaneous criminalization and dehumanization of slave fugitives, undocumented immigrants, and refugees. Using similar logics of difference, moral servitude, and capitalist productivity, the state has historically policed, barred, and terminated their differently marked bodies
A Book on Community
My appreciation of Clare’s attentiveness to exceptional bodies likely stems from my yearning to “see” myself—someone with a chronic autoimmune disorder whose body, in Clare’s words, is truly in “dis-order”—acknowledged in this book. Within the first forty or so pages of reading Clare’s anti-cure politics, I scribbled in the margins, “What about me?” in hopes that Clare would recognize those of us whose unbearable bouts of pain and uncertain futures make anti-cure politics sound like a privilege. I am satisfied when he finally reveals the voice of a queer disability activist: “It’s true; we need to resist the assumptions that our bodies are wrong and broken. But at the same time, the chronic fatiguing hell pain I live with is not a healthy variation, not a natural bodily difference” (53). It was at that point that I found community in the book.
A major facet of living with illness and disability is the duality of isolation and community that accompanies it. My seeking community in the book and eventual success finding it reflects the affective responses produced by Clare’s writing. In the subsection “Wanting Cure,” Clare outlines the familiar scenario of a disability support group, sharing emotional truths that disabled people often share in these intimate spaces: the shame, the unknowns, the material expense, and so on. He ends, “You’d take a cure tomorrow, and yet you relish sitting in this room” (54). I concur that the solidarity and support I have experienced in communion with other “spoonies” has been a beautiful part of being “sick” and one that I do not wish to lose even if I achieve remission. This reflection leads me to ask: must we be sick in order to experience intimate forms of community? Or conversely, might disabled people be building necessary types of communities required to nourish all body-minds? In other words, does being sick/disabled offer the simultaneous vulnerability and material experiences of injustice required to manifest radical social practices?
To these ends, Clare reframes traditional understandings of disability, asking, “What might happen if we were to accept, claim, embrace our brokenness” and find beauty in it (160)? The question made me think about the days when in my darkest moments of pain, the debilitating effects of inflammation produced by rheumatoid arthritis, I have laid down crying on my bathroom floor. My friend Sandibel Borges commented how this image was beautiful because I intuitively knew that Mother Earth should hold me. Likewise, another friend, Tala Khanmalek, helped me reconsider that “what is beautiful is broken.” It was on a panel with Khanmalek and other women of color that we discussed how white supremacy and hetero-patriarchy harm women of color, producing and exacerbating illness. We shared stories about our survival and resistance, embracing our bodies and teaching other women of color to do so too. In these ways, Clare’s words echo those spoken in my women of color communities.
A Book on Accepting and Valuing Heterogeneity
I appreciate the numerous passages in which Clare celebrates heterogeneity of body-minds. He offers many examples that communicate as both metaphor and literal connection to how society treats heterogeneous bodies. For example, in chapter 8, “Moving Through Cure,” Clare stunningly draws connections between airports and cornfields, polyculture and human existence. He argues, “Monocultures do an immense amount of damage. So much labor and violence goes into creating and maintaining them. Their existence requires hundreds of eradications and removals” (133). In other words, while monocultures are damaging, heterogeneity in farming is both helpful and necessary for entire ecosystems to thrive. Might we consider how heterogeneous body-minds are necessary for the thriving of human existence and how prioritizing homogenous body-minds is both violent and wasteful?
It is true that “cure messages” communicate opposite ideas. Cure messages, literally everywhere in American society, convey the idea that disabled people are not worthy of existing. For instance, just as I was reading the opening to Clare’s book, a commercial for the show This Time Next Year appeared on my television screen. According to the Lifetime Network website, the show requires that each contestant make a “personal pledge for change in front of a live audience.” Contestant goals include losing weight, having a baby, and of course, overcoming an illness. In one episode, a woman named Jayne Hardman struggles to regain confidence after an autoimmune illness causes her to lose her nose. According to an entertainment website:
[EXT]In 2012, Jayne Hardman’s dog bumped her nose but the swelling didn’t go down. It wasn’t until 2014 that she was diagnosed with a rare autoimmune disease that eats away at body tissue. To her horror, Jayne’s nose slowly collapsed, and she was unable to breathe through it. Jayne hates looking in the mirror and is too self conscious to go out alone as she sometimes receives nasty comments. This Time Next Year, Jayne hopes that her condition will finally be in remission so she can get a prosthetic nose, feel like her old self again and have the confidence to go out on her own.1[/EXT]
The overall message of this episode is that Hardman is not “enough” without a nose. While I do not judge Hardman for wanting a prosthetic nose, Brilliant Imperfection heightened my awareness of the damage that shows like this reinforce for disabled people—particularly those who cannot afford prosthetics or treatment that allows them to appear and/or function as able-bodied. I also recognize how Lifetime uses Hardman’s appeal as a blond, white, thin, attractive woman to magnify “the horror” of her disfigurement. Would the audience be as moved by a fat person of color with the same story? The answer is probably no. Thus, Hardman’s story not only reinforces ableism, but also white supremacy and sizeism.
I observed another example of cure politics following the death of the late mathematician Stephen Hawking. Shortly after his passing, images of Hawking walking up a stairway to heaven with his wheelchair behind him flooded social media. As many have argued, this image erased Hawking’s long history as an advocate for disability rights who did not view his disability as a hindrance. Substantiating this fact, they noted Hawking once stating, “My disabilities have not been a significant handicap in my field, which is theoretical physics. . . . Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in” (1984). Others cite his longtime choice not to change his computer-generated voice with the advancement of technology as a model of resistance against ableism. That the prevalent images following Hawking’s death contrasted Hawking’s unapologetic disabled identity invite us to ask: why must freedom and life-changing dreams equate to erasing disabled body-minds?
In practice of Clare’s politics of listening, I believe there is room for disabled people—including Jayne Hardman from This Time Next Year—to seek restoration and ease. Thus, like Clare, I reject the binary of cure and anti-cure and a culture that reinforces this binary. There is room for all disabled and sick people to exist as we are: without pain, fear, and ridicule.
I appreciate this opportunity to engage with Eli Clare in the spirit of community. Eli: Thank you for writing this book. It is so needed. One question I was wondering relates to p. 6: I appreciate your recognition of the intersections of racism and ableism as white people co-opt “Indigenous spiritualities.” I understand that you raised this issue to illustrate how strangers dehumanize and essentialize disabled people in often racist ways. I agree that the comments you cited are wrong and patronizing. Yet, I also believe that there are profound and unexplainable connections between disability, pain, healing, and spirituality in communities of color. I was wondering if you might share your thoughts on spirituality, disability, pain, healing, and power.
And a practical question: Even while I believe we, as people with disabilities and/or severe chronic pain, live with the vulnerability needed to create intimate interpersonal care spaces with politically subversive potential, how do we on a practical level build these spaces when we are tapped out every day, spoonless, and/or borrowing spoons from future days? Thank you in advance.
https://www.itv.com/presscentre/ep1week15/time-next-year.↩
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3.4.19 |
Reply
On the Power of Community
Karen Hanna, the question—“What about me?”—through which you read my book is deep and far-reaching. In this world, there are so many kinds of exclusions, carrying with them impacts ranging from inconvenience to sorrow, isolation to hunger, houselessness to exile, violence to death. Your question reminds me of all the exclusions that haunt disability rights politics and activism. How the leadership has largely been white heterosexual physically disabled cisgender men. How people with chronic illness and chronic pain; people with learning, intellectual, and developmental disabilities; psych survivors and people with psychiatric labels and self-defined mad people; neurodivergent people; deaf and hard-of-hearing people have all been pushed to the very margins of many disability communities, if not excluded entirely. How rampant racism in white disability spaces and ableism in non-disabled communities of color have left disabled people of color very few places to bring their whole selves. Some of these exclusions are beginning to shift, particularly as disability justice grows strong and fierce, led by disabled and sick queer women and femmes of color. But many of the exclusions remain entrenched, and I feel them reverberating in your question.
As I wrote about and grappled with cure, I kept working to create space for many different, and sometimes contradictory, body-mind experiences and desires. The search for this space drove me toward the messy middle between a fierce anti-cure politics and a pro-cure dominant worldview. I believe that to find liberation we need a body-mind politics as complex and contradictory as our body-minds themselves. We—and I mean a very large, inclusive we—need a body-mind politics and a politics of cure that resist these exclusions.
Of course one of the ways of resistance is through community. You write, “the solidarity and support I have experienced in communion with other ‘spoonies’ has been a beautiful part of being ‘sick’ and one that I do not wish to lose even if I achieve remission.” Yes! Yes! But in your affirmation of community, I also see/hear/feel the porousness of the lived experiences and identities of sickness and disability. For those of us who move in and out of the body-mind conditions currently known as disability and chronic illness, what are the realities of finding, keeping, maintaining, losing community? The ideology of cure leaves no space for the loss that sometimes accompanies treatment, remission, cure. You ask, “Must we be sick in order to experience intimate forms of community?” This question feels to me as deep and far-reaching as your earlier query, “What about me?” I feel loneliness, ache, the fear of exclusion in your words.
Then you make a turn to suggest that disabled and sick people have something important and necessary to offer the world. Even with all my disability politics and years in disability communities, this suggestion always jolts me, knocking against my internalized ableism. You ask, “Might disabled people be building necessary types of communities required to nourish all body-minds?” I want to name interdependence here. All of us—disabled or not, chronically ill or not, spoonies or not—are interdependent; we live on a planet made of billions of interdependencies. I think many disabled and sick people live with interdependence particularly close to the surface, explicitly knowing how essential it is to our survival. We bring such important knowledge, skills, and experiences to the practice of interdependence.
In your multilayered exploration of the power of community, you write about the “profound and unexplainable connections between disability, pain, healing, and spirituality in communities of color,” and ask me for my reflections. I pause here, aware of being white and a pagan without ties to organized religion. I don’t quite know what I want to say. I feel so much ambivalence about the word healing. When I was a child, the Christians who prayed over me wanted to heal me; that’s the word they used. In retrospect, their words and intentions felt patronizing, objectifying, trivializing. All too often cure and healing are used as synonyms.
At the same time, I think of Healing Justice as it is led by women and trans people of color. (For more on Healing Justice, see Aurora Levin Morales’s Medicine Stories, Leah Lakshmi Piepzna-Samarasinha’s Care Work, and Susan Raffo’s blog.1) In this context, healing isn’t a simple synonym for cure, for fixing disability and illness, for eradicating them, but rather a word that describes multifaceted processes designed to shift individual and communal relationships to pain, distress, trauma. The people I know who are truly embedded in Healing Justice (and not appropriating that language to sell New Age concoctions or repackage cure ideology) are paying close attention to the harm done by multigenerational legacies of trauma, violence, and colonization. This work is profound and necessary but needs to be grounded in anti-ableist politics and practices. Otherwise a slide into some version of the Christian prayers I experienced as a child is all too easy.
And finally you ask, “How do we on a practical level build these [intimate interpersonal care spaces with politically subversive potential] when we are tapped out every day, spoonless, and/or borrowing spoons from future days?” I could respond by writing about Facebook, FaceTime, Instagram, Tumblr, Skype, Zoom, texts, emails, phone calls, old fashioned letters, livestreaming. And yes, all of these technologies are useful for creating access and building communities not in person. But as we think about the importance and the potentially transformative nature of community, I also want to name the realities of isolation: how ableism, racism, poverty, homophobia, transphobia, misogyny, xenophobia, as well as shame and pain and exhaustion, shape the conditions under which we create and sustain (or don’t) connections with each other. There are no easy answers, just a great need for community to nourish us and provide spaces for us to be our whole selves.
https://susanraffo.blogspot.com.↩
3.11.19 |
Response
Articulating Brilliant Imperfection
Part poetry, part prose, part cultural critique; part political analysis, part eco-criticism, part rant; part memoire, part investigative journalism, part social analysis; with those parts, a mosaic—Brilliant Imperfection shares with classics like The Souls of Black Folks the very definition of “the problem of genre.” But, as with Souls, the so-called genre problem is only one for those doing the “so-calling.” While the problem of classification is ours to deal with, the text is what it is—though I do admit that there is something disappointing about looking at the back of the book to see it categorized as “Disability Studies | Disability Activism | Queer Studies.” Yes; that is fair and true. No, I’m not mad that Disability and Queer Studies, and Disability Activism get some shine. But is that all? In a text that thinks human becoming and interdependence through the experience of ecological restoration, and that moves through gender transition, fat politics, haunting, and memory, while never failing to thread the eye of the needle that weaves between and from cure and care, those marks seem to miss the mark. Surely “classic” will become one of its marks. And maybe “mosaic” should be one of the categories. How do you write a mosaic? I don’t know—Ask Eli. Whatever you do, read this book.
Brilliant Imperfection uses the poetic and the fragment and the in-between spaces. In that spirit, I offer this response.
Cure
Despite my opening invitation to its worship, I did not like this book at first. I initially thought, is this what disability studies is coming to: the fine art of the rant? Clare’s disdain for the Foundation for a Better Life made sense. But the flat-out animosity against Christopher Reeve seemed unwarranted. I thought Clare to be bitter and jealous, and, well—how could anyone be mad at Superman? Then, Clare did several things to show me that I had underestimated him and this text. First, in a move reminiscent of Paul in the Epistle to the Romans, Clare pivots in the middle of one of his rants about Reeves to expand his (and thus the reader’s) thinking about cure. He writes, “One day in my work as an activist-writer, I’m at a podium, debunking lies about disability and cure, ranting yet again about Reeve. I pause, look at the audience, and see my friend P. standing at the back of the room. Her story of surviving cancer—surgery, chemo, radiation, her brush with death—flashes through me. All at once, my words feel like empty rhetoric. I have no idea what cure means to her” (13). This encounter with P. moves Clare and his readers away from a simplistic take on cure, away from “empty rhetoric,” back to its complications and contradictions, back to relationship. That is, we get to acknowledge what he says in the very first section on birth (“I am alive today because of medical technology”) and what he says about cure’s politics of eradication (“as a widespread ideology centered on eradication, cure always operates in relationship to violence”) (5, 28). As such, this grotesquery, this ambivalence, this ambiguity that one encounters with cure calls for something more supple than or even tangential to the art of the rant. Rather, for Clare, “we need neither a whole-hearted acceptance nor an outright rejection of cure, but rather a broad-based grappling” (14).
Second, Clare follows this Pauline pivot to demonstrate that the emotional and moral terrain upon which this book stakes its ground is not a simplistic ranting moralism that abandons complexity for self-justifying arguments and/or “winning.” Rather, the moral and emotional terrain is one that is far deeper, more intimate, more discerning, more complex, more difficult, more caring—holding this more while coming to speech about what is and is not true, right, or good about cure. Cure moves between the eradication of life-threatening illnesses (AIDS, malaria, smallpox, and certain forms of cancer) and the elimination of defects not necessarily lethal (autism or cerebral palsy for example) (26). And while this movement creates its own moral quagmire and paradoxes for the person who would claim their disability, cure becomes even more complicated. The impulse to cure, we learn, is persistent, refusing to stop even at the threat of death. Clare gives the example of Rosie Attard, who was born conjoined with her sister Gracie and who would die if they were separated. The hospital which “cared” for Rosie and Gracie sued their parents, Michaelangelo and Rina Attard, and won the right to separate. Here, cure included the elimination of life (28). I, who was so ready to judge Clare’s ranting moralism, found myself speechless at this juncture. As my friend Kendrick reminds me, sometimes anger is deeply connected to love.
Third, Clare demonstrated that he knows the meaning of mutuality in coalitional politics. He is careful in his speech about African Americans and in our relationship to disability. While I have been asking whether or how African Americans use the disability frame to organize their “body-mind” experiences—a question which is important to ask but is in need of more nuance—Clare demonstrates that black identity and disability are genealogically related through the concept of defect. Dr. Samuel Cartwright, writing in the New Orleans Medical and Surgical Journal in 1851, suggested that blacks suffer from “‘diseases of the mind’: drapetomania, which he claimed led enslaved African Americans to run away, and dysaesthesia aethiopica, which led them to be lazy” (24). While a “defective hematosis . . . conjoined with a deficiency of cerebral matter in the cranium . . . which has rendered the people of African unable to take care of themselves,” seemingly had no cure, Dr. Cartwright believed that dysaesthesia aethiopica was curable by bathing blacks, covering them with oil, and beating the oil in with a leather strap (23–24). In other words, torture. Bracketing for the moment the contemporary question of self-identification and sociopolitical usage of disability by blacks, this suggests to me that disability’s very meaning is unthinkable without cross-examining the racial history of Western medicine in which it participates. It is clear that Clare is ready and willing to go with the researcher down this path.
Striving
I suggested that Eli Clare and W. E. B. Du Bois both have a genre problem. But I want us to think about W. E. B. Du Bois here for other reasons. For those of us wondering with Chris Bell and Audre Lorde about the relationship of black thought and studies to disability studies, or “the whiteness of disability studies,” I wonder if we ought not turn to W. E. B. Du Bois’s early work which often frames the needs of recently emancipated African Americans in terms of sociopolitical participation and access. When Du Bois writes, “This, then, is the end of his striving: to be a co-worker in the kingdom of culture, to escape both death and isolation, to husband and use his best powers and his latent genius. These powers of body and mind have in the past been strangely wasted, dispersed, or forgotten,” I 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.1 I want to suggest that the grappling in Clare is akin to the striving in Du Bois, and that beyond the genealogical relation, disability studies and black studies/thought might share both an aesthetic orientation toward the “dedisciplinized,” the poetic, the mosaic, toward the kind of writing and thinking that has a “genre problem”; and they might share a contemporary political and ideological relation that joins them together along the axes of access and participation for the purpose of attacking white supremacist and ableist power structures. With Clare, I refuse the analogy or simple conflation of ableism and racism, because for black folks with disabilities, they know how and whether the two converge and diverge, when which is foregrounded and backgrounded, and when which provides the terrain upon which their actions are mapped, or the hermeneutic by which their behaviors are read (10). And yet, I welcome understanding black people and blackness in terms of sociopolitical access and participation, whether or not disability is within the frame. I do not see this gesture as negatively appropriating of the thought and labor of the disability rights movement but as a kind of cohabitation and coalition. The lexis which includes access and participation is pointing toward a collective exclusion but one that manifests itself or takes places particularly. We can share the words if we can remind ourselves of the sameness-in-difference in them. Plus, we’re here together; we may as well work together.
Personally Speaking
Presently able in body and mind, I am finding a voice in disability studies because of academic study, personal experience, and invitation. The invitation comes from my friends at the Summer Institute for Theology and Disability, but especially Kendrick Kemp and Russell Ewell. Kendrick and Russell are working on a practical theology that would be a black liberation theology of disability. Kendrick started his work because he wanted to think about disability in a theological way. For him, taking up disability is a gift to the theological world, the church, and the black church in particular. These two have invited me to share the labor of black theological work around disability with them and I said yes. But I’m constantly aware that if not for coursework engaging disability studies and theology and then in theories of disability, I might not be here. That does not mean that I would be unconcerned. When my late grandmother first got sick, we had to reorganize her life, our lives, and her home around her new abilities and inabilities. One time, I tried to get her to do a breathing exercise recommended to her by a physical therapist. They had given her one of those blow-tubes where you blow into it and the ball inside rises. It’s supposed to help you get a visual (and maybe quantitative) sense of how your lungs are functioning. So, I sat down next to her and said, “Ok, Granny. It’s time for you to do your breathing exercises.” And she looked at me, and kind of rolled her eyes, and sat up in her chair. And then, she put her lips on the simple device and said “toot, toot.” I can laugh about his now. But I was incredulous at the time. After sweet talking and even guilting her to do the exercise she finally looked at me and said, “I know, I know. It’s just embarrassing. You would think that somebody this old would be able to do something as simple as breathe.” My grandmother had been my rock—our rock. I had never associated someone with so much wisdom and power with shame. Here she was, in her 80s, embarrassed to have to learn to breathe again. But I loved her, and I wanted her to breathe with all her might.
Love
I didn’t like this text at first, but by the end, I loved Brilliant Imperfection. I want to publicly own up to the truth that Clare evoked and provoked deeply spiritual and thoughtful encounters in me. When I discipline my mind to say why, I think that several things are going on. After that first pivot and descent into complexity, I felt free to join him in his journey. At some point I stopped looking for the trap door wherein I would fall out because of my race, age, socioeconomic background, sexuality, gender, or ability. I did not find it. Clare did not use this text to obliterate connection and relationship but instead fostered and opened the door to them. And then, too, Clare is relentlessly, unsparingly, unflinchingly honest—almost honest to a fault. But the point of his honesty is the potential for love which rests upon honesty’s horizon: self-love, body-mind love, love of one’s neighbor, friends, other planetary beings, of the earth itself. Clare refuses to lie to you or me inasmuch as he refuses to lie to himself. And his compassionate praxis is such that his refusals to lie create the opportunity for understanding across many forms of difference. In this work, I feel as if I find an ethics and a politics of thinking, of writing. Perhaps that’s the meaning of mosaic as a category: here is an example of how you discipline your body-mind so that you think and write toward the loving interdependence of all of beings. Clare empathizes, he sits with contradiction, and he loves. Of course, my Christian imagination is quoting 1 John 4:18: “There is no fear in love; but perfect love casteth out fear. . . .” That’s what we witnessed in this text. We saw, in this text, the brilliance of the ongoing perfection of imperfect love. Or at least, I did.
W. E. B. Du Bois, The Souls of Black Folk (New York: Dover, [1903] 1994), 3.↩
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3.11.19 |
Reply
On Learning from Readers
Leonard Curry, I would never have dreamed of Brilliant Imperfection alongside The Souls of Black Folks and the Epistle to the Romans. Of course I am honored by the connections you make, but more importantly I’m reminded of how much I learn about my writing from readers. Queer poet and theorist of color Gloria Anzaldúa writes,
In the past the reader was a minor character in the triangle of author-text-reader. More and more today the reader is becoming as important if not more important than the author. Making meaning is a collaborative affair. . . . Writing is a . . . communal activity not done in a room of one’s own. It is an act informed and supported by the books the author reads, the people s/he interacts with, and the centuries of cultural history that seethe under her skin.
She describes her relationship as a writer with her readers as intimate and interactive and connected to her “colored queer feminist mestiza identity.”1 Anzaldúa’s words resonate for me.
When I read you reading Brilliant Imperfection and thinking through “the problem of genre” and the possibility that mosaic might be a genre or a thematic category, our exchange, in spite of not knowing each other in person, feels intimate and interactive. Your picking up the word problem sparks my ongoing thinking about trouble. With both concepts, the questions, who does the defining and for what purposes, loom large. Predictably I adore how simply and bluntly you identify the source of the “genre problem”: “the so-called genre problem is only one for those doing the ‘so-calling.’” But the more unexpected learning for me, writer to reader, is in your working through of mosaic.
You write, somewhat rhetorically, “How do you write a mosaic? I don’t know—Ask Eli.” Since you ask, let me say that I have thought, until now, of mosaic as a method. I started my writing life as a poet and wrote poems almost exclusively for fifteen years before turning some of my attention toward essays. In those years I learned about layering images one on top of another, about turning stories into fragments and shards and fashioning a narrative arc out of those fragments, about juxtaposing different ideas, sensations, experiences. So when, about halfway through the writing of Brilliant Imperfection, I realized I had a growing pile of fragments—pieces ranging from 150 to 3,000 words, a chaos of memoir, history, critical thinking, and ranting—and no plan to help me stitch, glue, bind them together; I first panicked and then I turned to my poet self. Ultimately I organized the book, created the mosaic, as if I were putting together a volume of poems. I paid attention to my intuition; I let meaning emerge from juxtaposition; I dropped an expectation of a singular linear progression. Out of this tangle arose a mosaic. Mosaic was my method of holding the complexities and contradictions of cure, holding different themes, styles, textures, and, yes, genres together.
Now in our collaborative and communal labor of writing and reading, you suggest that mosaic is in and of itself a category. Toward the end of your response, you write, “In this work . . . I find an ethics and a politics of thinking, of writing. Perhaps that’s the meaning of mosaic as a category: here is an example of how you discipline your body-mind so that you think and write towards the loving interdependence of all of beings.” The word interdependence catches me. Thank you for juxtaposing that word with mosaic. A mosaic is a pattern, an art form, a practice of the utmost interdependence, no one shard holding wholeness by itself. Put that way, I might argue that mosaic is an anti-category. The very existence of categorization systems—maps, The Diagnostic and Statistical Manual of Mental Disorders and The International Classification of Diseases, Library of Congress Subject Headings, and taxonomy, for example—depends on drawing boundaries and borders. In contrast, mosaics gather distinct, bounded fragments together and then subsume each individual distinction into a larger communal being. I’m struck now by how mosaic as a form of and metaphor for interdependence is such a fitting response (or maybe retort) to cure.
Thank you—as one writer to one reader—for the collaborative and communal labor that makes writing and reading such an ongoing, provocative dialogue.
Gloria Anzaldúa, “To(o) Queer the Writer,” in Living Chicana Theory, ed. Carla Trujillo (Berkeley: Third Woman, 1997), 269.↩
3.18.19 |
Response
Curing Cancer in Time
In between the time Syndicate asked me to contribute to this symposium and I sat down to write this essay, I was diagnosed with stage IV colon cancer that at least one doctor has described to me as incurable, although others have been more hesitant to use this language. With few symptoms and no risk factors, I continue to struggle with a diagnosis in which my initial prognosis was a less than a 10 percent chance of survival. I have been a longtime fan of Eli Clare’s work, especially Exile and Pride, but I read Clare’s most recent book, Brilliant Imperfection: Grappling with Cure, through my own diagnosis and prognosis. Here, I draw on Clare’s grapples with cure to, first, explore how cure becomes an unfulfilled promise of time and to, second, challenge the business of curing cancer.
My copy of Clare’s book has taken on a form that reflects how it was read: over a long period of time. I often keep pens in books to mark my place even though I know it is a sure way to force the pages out of formation. Because I started reading Clare’s book prior to surgery and picked it up as I was able throughout surgical recovery, the places marked by pens are noticeable. Despite my best hopes, I did not spend my time in the hospital reading. Instead, I tried to convince my nurses that the epidural was not managing my pain effectively. I am only beginning to learn what Clare already knows: both pain and pain management take time, “You work and work and work some more” (53). My pain and Clare’s pain are different but they both take time.
Pain management becomes part of a time equation. My pain in the hospital and my continued pain on chemotherapy are pains induced by treatment. The pain caused by cancer prior to treatment was minimal. These are pains undertaken in order to prevent more painful symptoms, such as total bowel obstruction, and prolong life. Pain becomes a game of trade-offs: twelve rounds of my chemo regimen promises to lead to painful neuropathies in my hands and feet but twelve rounds is the standard for preventing recurrence, which would lead to more pain and less time.
Clare describes cure as a kind of time travel, “Cure is such a compelling response to mind-body loss precisely because it promises us our imagined time travel. But this promise can also devalue our present-day selves” (57). My cancer is incurable but the box checked on the order form for my treatment intent is curative. Here, a disjunction. An incurable cancer that my doctors hope to cure. A pervasive ideology appears: you are here to be cured even when cure is not possible. I tell a doctor that I will never be the same and he gives me a concerned look. But this is the truth. I will never be the same. I am not hoping for what Clare describes as time travel, a restoration of my previous self, but I am hoping for more time. My doctors, on the other hand, seem to harbor a hope for restoration even as they remove organs that will never grow back. My colon will always be a semi-colon.
For me, chemo offers not a cure but time. Time to laugh with family and friends; time in which to finish the books I’m writing; time to continue learning Spanish; time to make bread. Four to six hours in the chemo chair and the nauseating aftermath requires time during which I cannot do any of these things so I rebuild a world in which time becomes a precious commodity. I give time to treatment, four to six hours in the chair every other week, time to nausea, time to find protein-dense food, time to read about alternative treatments, time for yoga and meditation, time to clean with new disinfectants supposed to prevent infection, time to nap. I trade treatment time for time to live. My doctors trade treatment time for time until a cure. I’m repeatedly told that things are so much better than they were ten years ago and the prognosis statistics haven’t caught up. And I will admit that I felt a sense of hope when I saw the “curative” box checked on my treatment form, as I feel hope every time my CEA falls.1 I do not think this hope is for a cure or for overcoming but for more time.
Clare and I have different diagnoses and, thus, different relationships to cure. A couple of times in the text, cancer appears to become a kind of foil for Clare’s anti-cure politics. Clare overtly describes his attention to the pain of others and how it jostles his anti-cure politics, “I listen again to the cancer survivor . . . I let [cancer survivors and those with chronic pain] voices jostle my anti-cure politics” (61). Clare lives without a cure while late-stage cancer is frequently a terminal illness. The difference between a cure and no cure for cancer is often the difference between life and death. While I admire Clare’s willingness to have his anti-cure politics jostled by the experiences of those with cancer and other painful chronic illnesses, I want to think about what it would mean to take up anti-cure politics around cancer treatment. Doctors and researchers seem to think that curing cancer is only a matter of time. My question is how we live in the meantime.
When I was diagnosed, more than one doctor told me that my chances of survival had drastically improved during the last five years of advances. This is part of a standard narrative that is offered to cancer patients: things are so much better than they used to be both in terms of managing the side effects of treatment and in terms of chances of survival. As S. Lochlann Jain says of a pink-ribbon event to raise money for breast cancer research, “The advertising of the event made it seem as if a cure were just down the road although survival rates have barely increased in the last century.”2 Jain’s claim stands in stark contrast to Susan G. Komen’s claim, “Our efforts helped reduce deaths from breast cancer by 38 percent between 1989–2014 and we won’t stop until our promise is fulfilled.”3 The discrepancy between Jain’s claim and Komen’s claim is probably around early diagnosis. While more people are diagnosed in earlier stages, increasing overall survival rates, the survival rates by stage have changed little.
To take up Clare’s anti-cure politics around cancer would mean to challenge the business of curing cancer. It would mean redirecting money from organizations obsessed with cure, including the American Cancer Society and Susan G. Komen, toward organizations that aim to improve quality of life for patients. As Clare suggests, “If the U.S. government and nonprofit organizations, private corporations and university laboratories are going to dedicate money and time to the future, they also need to do so for the present. They need to fund accessible buses, schools, classrooms, movie theaters, restrooms, housing, and workplaces. They should support campaigns to end bullying, employment discrimination, social isolation, and the ongoing institutionalizing of disabled people with the same enthusiasm with which they implement cure research” (87). Cure promises a bright future; Clare asks us to attend to lived realities in the here and now.
Part of challenging the business of cancer also means challenging the “cult of positivity” that surrounds cancer. Care packages arrive from places like “Choose Hope” and the walls of the cancer center implore me to “never give up.” Barbara Ehrenreich jokes sardonically about this cult, “Cancer? See it positively, as a ‘growth opportunity,’ and hopefully not just for the tumor.”4 Instead of demanding smiles from people who are literally dying in our midst, we might redirect our resources toward figuring out how to make people comfortable and how to help them talk about dying with their loved ones.
In addition to supporting people in the midst of illness, Clare’s anti-cure politics also ask us to reconsider the boundaries of gender. Many experience illness as de-gendering; cancer campaigns attempt to re-gender those with cancer. Consider the anxiety to re-gender those with breast cancer in the feminine pinkness of the pink ribbon campaigns. Consider Audre Lorde’s famous refusal to re-feminize herself through the use of breast prostheses and the social alienation she experienced as a response. Consider one male cancer memoirist’s joke (in a chapter titled “Chemo Sissy”), “Cancer proved useful in giving me dozens of jokes about my vagina.”5 These recognitions of de-gendering and attempts at re-gendering cancer patients reveal one of the logics of cancer: cancer causes a loss of gender that must be reinscribed. Instead of reinscribing gender in the wake of cancer, I ask Clare’s question, “What do we need to make peace with our visceral selves today, to let go of the fantasies, even if we hope beyond hope that our flesh and bones, organs and neurons might be different someday down the line?” (87). Can we make peace with our bodies outside of the frames of heteronormativity? The cult of cancer reveals a site of struggle that complicates the performance of heteronormative gender roles.
Clare’s anti-cure politics direct us toward the systemic injustices that often cause cancer and other illnesses. As Clare suggests, “Cancer and asthma would become not symbols but lived realities amidst injustice . . . cure also requires dismantling racism, poverty, and environmental injustice. I let health and cure take on multiple meanings” (62). For Clare, illness and cure are not things that happen to one individual body. Rather, illness often results from systemic injustices. Instead of always seeking a cure, we look to movements for regulating the use of known carcinogens and to cancer-causing agents such as mines and nuclear plants located in rural, poor communities. Cancer, in this view, is no longer the fault of an individual but the fault of a nation, so cure requires much more than removing cancerous cells from a single body.
With Clare, I think about what it would mean to think about cure amidst racism, poverty, and environmental injustice. I am not alone in my diagnosis. Colon cancer is on the rise among twenty- and thirty-year-olds and no one really seems to know why but many don’t think it’s too far off to suggest something cultural and environmental.6 We don’t know enough about cancer to be able to treat it effectively but we do know some things that cause it and most do not have to do with individual choice. Cancer is often not a problem with individual responsibility but with collective responsibility. I have not failed but we have.
I am grateful that Clare and others have grappled with cure and that they have shared their language and sets of categories to help others as we navigate our own encounters with the medical-industrial complex. To me, it does not matter that we might cure cancer in time. And so, as Virginia Woolf describes, “With the hook of life still in us still we must wriggle.”7
CEA, or carcinoembryonic antigen, is a blood test that measures a protein that is heightened in people with certain types of cancer, especially colorectal cancer. I’m told it’s an inaccurate test but it’s the best we have and so, as my numbers fall, I hope that I might outlive my grandmother.↩
Jain, “Cancer Butch,” Cultural Anthropology 22 (2007) 504.↩
http://ww5.komen.org/AboutUs/AboutUs.html.↩
“Notebook: Pathologies of Hope,” Harper’s, February 2007, 9.↩
Micheli, Cancer Is Funny (Minneapolis: Fortress, 2016), 89.↩
See Roni Caryn Rabin, “What Young People Need to Know about Colon Cancer,” New York Times, March 16, 2017, https://www.nytimes.com/2017/03/16/well/live/what-young-people-need-to-know-about-colon-cancer.html, and, Roni Caryn Rabin, “Colon and Rectal Cancers Rising in Young People,” New York Times, February 28, 2017, https://www.nytimes.com/2017/02/28/well/live/colon-and-rectal-cancers-rising-in-young-people.html.↩
On Being Ill (Ashfield, MA: Paris Press, 2002 [reprint]), 17.↩
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3.18.19 |
Reply
On Being Called-In
Meredith Minister, what a lovely and generous calling-in you’ve given me. I feel the in-ness of it. Of course you are inviting me to be accountable for both the ways I use cancer to frame some of my arguments and how I make assumptions about living and dying with cancer. But just as importantly you are calling me deeper into a grappling with cure.
In activist spaces, there’s a lot of talk right now about calling-out and calling-in, both being processes of holding people accountable for their dubious, unacceptable, or oppressive behavior. Calling-out is characterized as a one-time public interaction, frequently between strangers, often harsh and angry; and calling-in as an ongoing and more private dialogue between people who know each other, less likely to be harsh but still motivated by anger. I think of your response piece to Brilliant Imperfection as a call-in, not because of how it matches (or doesn’t) these characterizations, but because of how your words, ideas, stories extend what I’m saying about cure and pull me further into my grappling. Holding me accountable for the ways I use cancer in my book may certainly be one of your goals, but I experience that possible goal less as an end in and of itself and more as the means by which you extend and pull.
Having said that, I do need to be accountable. You write, “Cancer appears to become a kind of foil for Clare’s anti-cure politics. . . . While I admire Clare’s willingness to have his anti-cure politics jostled by the experiences of those with cancer and other painful chronic illnesses, I want to think about what it would mean to take up anti-cure politics around cancer treatment.” I read your words, my breath catching. I know immediately that you’re naming a truth about this book. I’m not beset by denial or defensiveness, but by chagrin that I’ve unquestioningly absorbed the ideology of cure, assuming that people with cancer want and/or are working toward cure, that I have used particular body-mind conditions and experiences as a foil.
The whole project of Brilliant Imperfection was built on my need to pay attention, to listen hard and long to many people’s relationships to cure. It started with being called-out by people living with chronic pain and by chronically ill people. They told me loud and clear that my anti-cure politics erased their experiences and realities. At first I denied their claims; then I was defensive, running their truths around and around my head, silently defending my arguments and intentions. This went on for several years. I am definitely not the best model of how to respond well to a call-out. But slowly I came to know that I had to stop and listen deeply.
Even with all that, I still turned cancer into a foil and made a bunch of assumptions. So first: I need to acknowledge my mistake. Second: I need to say that no one’s body-mind and visceral experiences should ever be turned into a foil. Third: I need to sit and listen again.
You write, “An incurable cancer that my doctors hope to cure. A pervasive ideology appears: you are here to be cured even when cure is not possible. I tell a doctor that I will never be the same and he gives me a concerned look. But this is the truth. I will never be the same.” You write, “For me, chemo offers not a cure but time. Time to laugh with family and friends; time in which to finish the books I’m writing; time to continue learning Spanish. . . . I trade treatment time for time to live.” You write, “To take up Clare’s anti-cure politics around cancer would mean to challenge the business of curing cancer.” I sit and listen, feeling gratitude, feeling excitement.
Here is the place I feel the in-ness of your call-in. I feel you taking my words and extending them into an experience that I had picked up largely as a foil. And through your extension, our grappling with cure becomes larger and even more complex. I feel you pulling me deeper in. This is what I wanted when I wrote, just before I sent the final manuscript to my publisher, at the end of the introduction, “Come sit with me. Let this mosaic that began in conversation spark a hundred new conversations” (xvii).
3.25.19 |
Response
From Cure to Kurort
Taking the Waters
We used Brilliant Imperfection: Grappling with the Cure in Queer Dreaming at Turtle Disco, a somatic writing studio in the Ypsilanti, Michigan, home I share with my wife. Queer Dreaming is a session I lead every other Sunday. I guide us into lucid dreaming with the aid of a book of queer poetry, or (like today) nonfiction. Four local disabled women dream together. After our dream, we write in the slipstream of what we read and what we dreamt. This particular day I selected Eli’s section on water cures as the piece to share: the ending of the “Structures of Cure” chapter, on hot springs.
We read of Eli’s visit at Saratoga Springs in NYC, erected with support by the government, of President Roosevelt’s activities in Warm Springs, Georgia, and of Eli’s turn away from the spa when Eli finds out that it is full up for the day, and Eli’s disgust with the commercial exploitation and capitalization of the earth’s healing potential. What traces would Eli’s writing leave in us? Eli writes: “Come sit with me. Let this mosaic that began in conversation spark a hundred new conversations.” We dreamt in Eli’s compass.
I dreamt of being invited into yellow rich waters. Three water dragons drew me down to the spring, at the bottom of the lake. There were yellow diaphanous veils, heat on my aching bones, relaxation. I was part of a curious form of aqua ballet with the three dragons like Game of Thrones kaleidoscopes around my round heavy limbs. At one point, one of my legs disconnected, and the dragons and I had to dive down to the lake floor to find it. We wove flesh to re-anchor the wayward leg in my pelvis. Then I woke up again.
In my waking life, water is central to my wellbeing. Like Eli describes in his journeys, I am now also a white disabled person with enough money to organize my travels around hot springs and therapeutic baths. Different from Eli, I grew up in a world where “the water cure” was not just the realm of privilege. I am from Germany, and part of our health care system was that anybody, including my working-class parents, had the right to go to a Kurort, a place of care and healing. All of us, my parents, my grandparents, and me and my sister, had at one point or another during my childhood used this system to go “take the waters.” I remember going to an aqua-therapy site on the North German coast. To help my painful body, I had prescriptions of daily rituals involving aquafitness classes, physiotherapy, and soaking in hot water. There were also long showers, lots of communal nudity, and a burgeoning teen erotic life that sensualized much of that stay into the foundations of a lifelong engagement with watery sites of human and nonhuman encounter.
My mother never officially identified as disabled, but she suffered from deeply painful skeletal and neural conditions all of her life, too. The few memories I have of her and me in sync rather than at odds with one another are in the bubbly water of a thermal bath in the Netherlands, five miles from my childhood home. And the stories of all those local springs, lakes, and rivers around me made up the stories my father told me when I was a little one getting ready to go to bed. I come from a colonizer nation and am a settler now in Michigan, but my innate sense of place and water is one watered by my family’s deep history of native origin in one place, deeply mixed with myth truth, water creatures, and water dragons.
I am mosaicking my way around the water cure, mixing many of the elements Eli discusses—but within a framework of wellbeing and maintenance, not of luxury and cure. I have had the privilege of soaking in Maori-owned hot springs in Aotearoa, and of wild and unimproved (hence only barely accessible) soaking holes on the Rio Grande. I have choreographed a community performance inside a therapy pool by the beach on an island in Sweden that is off limits to non-disabled people, and that can only be accessed for those who have the equivalent of the “crip car badge.” For our performance (I had choreographed the piece for Company Spinn, a Swedish physically integrated dance company), we invited non-disabled people to this crip island. They came, brought their bathing suits, and jumped in to be part of our movement, our salamandering, different lizard strokes.
The sites of warm waters heal in many ways—not just in biomedical cure formats, but in ways that bind people to land and to one another. One of our Queer Dreaming group shared what she experienced in her lucid dream: she went to Saranac Lake, one of the lakes Eli speaks about, and remembered a motorcycle journey, their joint canoe journey, hot dogs brought from a reservation home, trout they fished for and cooked in bacon fat, swims off Honeymoon Island, memories of fire and water.
Eli’s gift is to bind experiences, longings, and desire to a deeply felt sense of the injustices, exclusions, and unmarked sites of violences that surround us. In my watery art projects, when we discuss our dreams, our childhoods, our lands in our circle, we unearthed these moments, binding the deliciousness of water memories to social justice aims: how to shift our health care systems. How to honor the wisdom carriers of particular lands, and ensure that wealth is distributed. How to acknowledge exclusions: who is not in this pool, what skin colors, what classes, what body-minds are not afloat together? What are the histories of pool segregation, anti hijab-legislation, bifurcated changing arrangements, or the lack of ramp access?
Pleasure and pain mix in Eli’s prose, and that was the feeling of our Queer Dreaming morning, inspired by Eli’s words. Eli writes a mosaic, and we feel it in our bones, longing and pain in dialogue.
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3.25.19 |
Reply
On Wellbeing, Healing, and Dreaming
Petra Kuppers, I’m thinking so much about wellbeing and maintenance, about individual and collective care, in this violent time of Trump’s presidency, this time of lies, this time of perpetrators appointed to the Supreme Court and white supremacists in the White House. I’m thinking about the deliciousness of soaking in hot water and the tenacity of the sit-ins, demonstrations, and civil disobedience led by disabled people that saved Medicaid and the Affordable Care Act two summers ago. Both this deliciousness and this tenacity are necessary for wellbeing here and now.
I want to know more about this “framework of wellbeing and maintenance, not of luxury and cure” that you’re working, playing, dreaming from. What would each of us know individually and collectively about our body-minds, about pleasure and pain and desire if we lived inside this framework? In much the same way that healing is used sometimes as a synonym for cure, wellbeing and health are regularly conflated. In this conflation we lose all the ways in which wellbeing extends far beyond diagnosis, exam rooms, and white Western medical authority, resists the wholesale medicalization of body-mind difference, and is twined with self- and communal-determination. Make no mistake: while health and wellbeing overlap in many of our lives, they are not the same.
How would Meredith Minister’s desire for time, not cure, unfold in this framework of wellbeing and maintenance? In what ways would it hold Karen Hanna’s concern that she might lose community with other spoonies if/when she finds remission? Could this framework, combined with anti-ableist politics and practices, be one of the keys out of the maze created by the ideology of cure? How might this framework undermine normal and abnormal?
Your words and this framework bring me back to healing. You write, “The sites of warm waters heal in many ways—not just in biomedical cure formats, but in ways that bind people to land and to one another.” You offer not so much a definition of healing as a suggestion of what healing does—a particular kind and quality of binding. What you’re suggesting doesn’t preclude cure, just moves around it or beyond it, doesn’t deny cure as a single medical tool/process among many, but does resist the dominance of cure as an ideology.
Your pairing of healing with binding brings me to dreaming—to my personal relationship with dreaming, to dreams about liberatory futures as a way through violence and injustice, to the ways you engage with Brilliant Imperfection through dreaming. I have an intense personal connection with dreaming. (As a content note, the next several sentences include references to childhood abuse but don’t contain any explicit details.) I didn’t dream until I was in my mid-thirties. Before that, my sleep was blank, punctuated with infrequent and reoccurring nightmares. I came to understand that I lost my dream life as a consequence of ongoing childhood physical and sexual violence, much of which happened at night. I started to dream—common, ordinary, pedestrian dreams—during a decade of therapy as I worked through that trauma. Dreaming became a marker of healing, of binding myself back to myself, healing even as parts of myself remained broken—healing that distinctly wasn’t cure. As I write in Brilliant Imperfection, “I could quibble over words and call myself damaged. But the starker, blunter broken calls to me. It speaks of fragments and shards, an irrevocable fracturing. . . . I won’t write the details or try to capture the terror and pain in words. But believe me: what they [my perpetrators] did broke my body-mind. It shaped every part of my life” (159). Dreaming for the first time marked healing but not an end to brokenness.
The story of losing the ability to dream due to violence and/or oppression is such a common one. The grind of survival grinds down our waking dreams and our sleeping dreams. If we dream at all of liberatory futures, it’s too often reactive—an end to poverty, an absence of violence, a tearing down of prisons. How do we cradle, cultivate, nourish our dreams and our capacity for dreaming?
It’s been twenty years since I started dreaming at night, a sleeping life plentiful and quirky, giving me puzzling ladders to climb and wide open skies to disappear into. That I dream at all still surprises me and fills me with wonder. I am a novice dreamer. Unlike you, I would never even imagine dreaming as a response to a book. I appreciate your dreams in and of themselves and as a demonstration of how dreaming can be used, encouraged, sought after.
I follow the chain back to the beginning of my response to you—from dreaming to healing to wellbeing and maintenance to hot water—feeling gratitude for the ways you choose not to engage directly with cure but under, over, beyond cure; choose an exploration that isn’t a grappling.
Alice Wong
Response
Disability Narratives for the Win
When I first heard of Brilliant Imperfection: Grappling with Cure, I immediately thought of my friend Sandy Ho and the name of her former Twitter handle, @PerfectlyImperfecta. A twist on osteogenesis imperfecta, a genetic disorder also known as brittle bone disease, the name @PerfectlyImperfecta pushed back at the medical-industrial complex that literally defined her (at least her bones) as imperfect. Why aren’t brittle broken bones brilliant and perfect as they are? Why aren’t disabled body-minds whole from the moment we come into the world? Clare describes:
I have grappled with cure and the medical-industrial complex my entire life. Like my friend Sandy, I was born disabled. I think about my mom and the reproductive technologies, services, choices she had in 1970s Indiana. I also wonder about the time period, geography, politics that created the circumstances surrounding my birth as a disabled human into this world as we know it.
I was one of “Jerry’s Kids” and went to clinics and other events by the Muscular Dystrophy Association (MDA). My parents would let me stay up late at night during Labor Day weekend to watch the MDA telethon.1 I felt special; it was the only time of year I saw people like me on television. The rhetoric of cure was part of my childhood media consumption.
My understanding of cure as a child was both biomedical and spiritual. A cure didn’t exist for my type of muscular dystrophy but if we all tried hard and raised money, scientists could one day develop a cure. Growing up as an Evangelical Christian,2 my mom in particular believed I could be healed, basically cure by another name. We went to a spiritual retreat when I was eleven in Taiwan where my mom thought I could be healed by prayer. I had no choice in going but I did not resist. It was fascinating to see people who were incredibly certain in their faith. After a few days I started to wonder what would happen if I didn’t become healed after the retreat. Did that mean God didn’t listen to me or that I didn’t pray hard enough? Maybe it was hunger from fasting that prompted these questions. . . .
I remember being at the retreat and thinking of it as an experiment. “What if I could walk again? Would I want this? Why wouldn’t I want this?” Recalling this now as a forty-three-year-old uppity disabled activist, I look back with deep empathy for my younger disabled girl self. Most of my desire for cure/healing was due to frustrations with accessibility, social isolation, discrimination. I struggled with the progression of my physical disability that came with pain and exhaustion. It makes total sense that one would want relief from this discomfort and difficulty.
Unsurprisingly, I remained disabled after that spiritual retreat. Hallelujah! Instead of developing an existential crisis, I left feeling more bemused than disappointed. I share this personal story because the idea of cure/healing is incredibly seductive. Clare writes:
The promise of a better life associated with cure is a siren call by the medical-industrial complex. After reading Clare’s essays “At the Center of Cure Lies Eradication” and “Wishing You Less Pain,” I thought of the recent progress in human gene editing and what it means for the future of certain body-mind differences.
According to the Center for Genetics and Society, “Human genetic modification is the direct manipulation of the genome using molecular engineering techniques.” One type of modification is germline genetic modification, which affects the genes in eggs, sperm, or early embryos. This means subsequent generations would also carry those changes.
In 2017, a team of scientists used CRISPR-Cas9,3 a powerful new gene-editing technique, to correct a genetic defect, hypertrophic cardiomyopathy, that can cause death in young people. Various articles reported studies by researchers using this tool to eliminate disabilities such as ALS, Huntington’s disease,4 deafness,5 among others.
Clare writes about different types of medical technology used in the diagnosis, repair, or adaptation of humans. Clare on cure technology:
Human gene editing is no longer a thought experiment or science fiction movie.6 The usage of human gene editing to alleviate prospective suffering and pain will result in the elimination of entire categories of body-mind differences in the near present and future. This is the elimination of our wisdom, culture, community, and identity. Rebecca Cokley, a second-generation disabled activist and parent, wrote in a Washington Post op-ed:
The fight now is not only for our lives in utero and once we are born, but for what we possess at the molecular level.
I gave a talk last fall at a health and technology conference8 about ableism and human gene editing where I asked the following questions, “So . . . what does this mean for the future of some people with disabilities? How will society change when we lose this diversity in human variation and culture?” The goal posts on deciding what is normal/abnormal, healthy/unhealthy, perfect/imperfect, disabled/non-disabled are constantly shifting, multiple sides pushing, pulling, lifting, lowering. This is the violence of false binaries. This is the violence of cure ideologies. On cure and violence, Clare writes:
Is this an asymmetrical war between marginalized communities and the medical-industrial complex? Is it just a war of attrition? I don’t know. I do regret not wearing an X-men “Mutant and Proud” shirt during my talk.9
The violence of binaries ruptures and destabilizes the beautiful interdependence of disability communities and cultures. While I resisted cures my entire life as a person with a neuromuscular disability, I have been reflecting on what cure means for other people who have debilitating chronic illnesses and disabilities that clearly want a cure for themselves, their children, and future generations. My friend Dominick Evans clarified the difference of absolute rejection of cures and the rejection of cure mentality: “Fighting cure mentality is not about not wanting treatment options. It is about fighting against the notion that without a cure disabled people are less.”10 It is possible to voice your own position on cure without invalidating other people’s body-mind/access needs. This is something I am slowly learning and striving for.
Imagining the ableist Hydra that is the medical-industrial complex, I don’t know what disabled people can do to influence the development of cures from human gene editing and the overall framing of cure. Living well and unapologetically is one thing. Revelling in our brilliance is another. How do we leverage our power? Do we have to cater toward the center in order to be acknowledged and heard? Why don’t non-disabled people listen to disabled people? Again, I don’t know.
I miss badass disabled activists such as Harriet McBryde Johnson,11 who debated on stage with utilitarian philosopher Peter Singer.12 I wonder how Johnson and writers like Susan Wendell13 and Stella Young14 would have responded to the enthusiastic emergence of human gene editing. “Unspeakable Conversations,” Johnson’s 2003 piece in the New York Times Magazine about her interactions with Singer, was a beacon of disability visibility in my life.15 I long to see a disabled or deaf bioethicist engage in a conversation with the scientific community on eugenics and cure technology.
It can be exhausting to have to prove your humanity and value during most social interactions. For the time being, this seems to be where I am as a multiply marginalized disabled person. Storytelling may be the most direct way to actively resist and oppose cure narratives/ideologies. I share my own story and use social media to amplify stories from our community16 that should be known to the wider public. Johnson writes about the power of disability narratives in her 2006 book Too Late to Die Young: Nearly True Tales from a Life:
[EXT]For me, living a real life has meant resisting those formulaic narratives. Instead of letting the world turn me into a disability object, I have insisted on being a subject. . . . And I tell stories . . . storytelling is a survival tool, a means of getting people to do what I want (3) . . . storytelling itself is an activity, not an object. Stories are the closest we can come to shared experience. (4)[/EXT]
Resistance and survival in this ableist world comes in many forms. It is the act of breathing and being. It is direct engagement with those who want to eradicate us. It is the creation of stories, images, and ideas. It is claiming and reclaiming language, embracing the brilliance of imperfection, impairment, disorders, illness, disability, and all othered others. These forms of labor stretch boundaries, expand spaces, and contort to existing structures, creating refuge and community.
Storytelling as resistance and a creative force is power.17 We all have stories to tell and share. Our disability and illness narratives can challenge narratives about cure in a collective effort to reframe and appreciate body-mind differences.18 From one crip to another, thank you Eli Clare for Brilliant Imperfection.
For more on the history of telethons, see Paul K. Longmore, Telethons: Spectacle, Disability, and the Business of Charity (New York: Oxford University Press, 2016).↩
For more on my childhood experiences, see Alice Wong, “First-Person Political: Musings from an Angry Asian American Disabled Girl,” Amerasia Journal 39.1 (2013) 108–17.↩
Hong Ma et al., “Correction of a Pathogenic Gene Mutation in Human Embryos,” Nature 548 (2017) 413–19.↩
Kristen V. Brown, “With No Cure in Sight, CRISPR Could Offer Hope for Lou Gehrig’s Disease,” Gizmodo, December 20, 2017.↩
Rob Stein, “Scientists Use Gene Editing to Prevent a Form of Deafness in Mice,” NPR.org, December 20, 2017.↩
Joe Gibes, “Gattaca Validated,” Bioethics.net, November 25, 2016.↩
Rebecca Cokley, “Please Don’t Edit Me,” Washington Post, August 10, 2017.↩
My talk at Stanford Medicine X, September 15, 2017: “Resisting Ableism: Disabled People and Human Gene Editing,” posted to YouTube September 16, 2017, 12:38.↩
Andrew Wheeler, “House of Xavier: How the X-Men Represent Queer Togetherness,” Mutant & Proud, part 1, Comics Alliance, June 16, 2014.↩
Dominick E. Evans, Facebook post, October 5, 2017.↩
Dennis Hevesi, “Harriet Johnson, 50, Activist for Disabled, Is Dead,” New York Times, June 7, 2008.↩
If I could, I would insert a middle finger emoji next to Peter Singer’s name. Harriet McBryde Johnson, Too Late to Die Young: Nearly True Tales from a Life (New York: Picador, 2006).↩
Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996).↩
Stella Young, “I’m Not Your Inspiration, Thank You Very Much,” TEDxSydney, April 2014.↩
Harriet McBryde Johnson, “Unspeakable Conversations,” New York Times, February 16, 2003.↩
https://disabilityvisibilityproject.com/.↩
Elsa Sjunneson-Henry, “I Built My Own Godd*mn Castle,” Tor.Com, July 31, 2017.↩
Mariah Ramsawakh, “The ‘Miraculous Cure’ Trope Is the Disability Representation We Need,” The Establishment, July 26, 2016.↩
2.25.19 | Eli Clare
Reply
On Resistance
Alice Wong, I so appreciate your blunt naming of how much risk disabled people face in relationship to emerging genetic technologies. You write, “The fight now is not only for our lives in utero and once we are born, but for what we possess at the molecular level.” Cure, not as one medical process among many but as a dominant cultural ideology, amplifies this risk immensely. Who and what will get edited out of existance? I am terrified and enraged by the possible answers to this question.
And I am even more appreciative of your move toward resistance. You write, “I don’t know what disabled people can do to influence the development of cures from human gene editing and the overall framing of cure. Living well and unapologetically is one thing. Revelling in our brilliance is another. How do we leverage our power?” I am eager for answers to your question.
Not long after Brilliant Imperfection was released, Leah Lakshmi Piepzna-Samarasinha asked me in an interview published by Bitch: “If you had a magic wand that worked, what would be your best-case scenario for a crip-controlled approach to cure?”1 Her question twines with yours and points to the deep need both to rebel against cure as an ideology and to dream about the future.
I for one know much more about rebelling. As you write, “Resistance and survival in this ableist world comes in many forms. It is the act of breathing and being. It is direct engagement with those who want to eradicate us. It is the creation of stories, images, and ideas. It is claiming and reclaiming language, embracing the brilliance of imperfection, impairment, disorders, illness, disability, and all othered others. These forms of labor stretch boundaries, expand spaces, and contort to existing structures, creating refuge and community.” It is defending Medicaid and the Affordable Care Act as so many disability and other progressive activists have. It is working furiously and tenaciously to shut down the Judge Rotenberg Center, a residential institution that uses shock therapy to control the behavior of autistic people and people with developmental, intellectual, and psychiatric disabilities. It is facilitating anti-ableism trainings for health care providers. It is forming care collectives and practicing interdependence. It is showing up to support and advocate for each other in exam rooms and hospital rooms. It is sharing and developing ways of wellbeing that are separate from—and can work in tandem with—white Western medicine.
Without a doubt, I am much more familiar with participating in rebellion than dreaming about the future. I know I’m not alone in this. And yet, we do need to be dreaming about possible and desired liberatory futures. When Piepzna-Samarasinha asked me about what I would do with a magic wand, she was inviting me to imagine myself a dreamer. In response to her question, I wrote, “We need to end the wholesale medicalization of body-minds. Remove profit from the development and provision of medical technology. Value self- and community-determination over medical authority. Dismantle the concepts of normal and abnormal. Create space for wellbeing, body-mind loss and pain, and death to all coexist together. Within these changes, cure would stop being an ideology and simply become one medical tool among many, which everyone could use in a variety of ways.”
While my answer is sufficient, it doesn’t travel very far or push the edges very much. I don’t imagine what might exist beyond normal and abnormal, what might be possible in the world if self-determination and interdependency were truly valued. My dreaming is mostly reactive.
I return to your question: “How do we leverage our power?” I know that in this specific moment you’re thinking about disabled people in relationship to cure—the dangers we face and the ways we can gain agency and make change amidst this ideology. But I want to enlarge the we. Disabled and non-disabled people, poor and rich people, people of color and white people, fat and slender people, trans and cis people, nonbinary people and women and men, queer and straight people are all subject to cure’s overarching authority, even as marginalized peoples feel its damaging impacts far more intensely and frequently. How do all of us, in all our messy and often contradictory relationships to cure, leverage authority away from that ideology? And those of us who have been denied power and full personhood—how do we claim our strengths, our knowledge, our stories, our emotions, our myriad ways of experiencing and perceiving the world and use them to dream beyond cure?
“How do we leverage our power?” you ask. Earlier I wrote that I was eager for answers to your question. Actually eager is an understatement. In truth, I yearn, thirst, feel desperate for those answers.
“The Complexities of Cure Culture,” Bitch Media, March 29, 2017.↩