Disability is a central condition of our existence in the Anthropocene. 1 In an era of rampant endocrine disruptors and persistent organic pollutants, amidst cesium and carcinogens, human health is increasingly imperiled by environmental harm—not only by spectacular incidents of toxic disaster, but by the cumulative effects of what theorist Rob Nixon has termed "slow violence," the "staggered and staggeringly discounted causalities, both human and ecological, that result from the toxic aftermaths of war, natural disaster, and climate change." 2 In conventional accounts of environmental harm, disability frequently functions as evidence of environmental damage, as a material marker of what has been done to land and flesh alike. 3 Yet disability studies theorists have challenged the pervasive tendency to figure disability solely in negative terms, what David Mitchell calls "a toxicity harbinger of disasters to come." 4 This article begins with the trenchant question raised by Sharon V. Betcher, who asks: "Can disability … be more than a metaphorical and statistical scare tactic to catalyze persons' environmental best practice?" 5 My answer is a resounding yes. In keeping with the theoretical orientation of disability studies and the lived insights of disability activist movements, I approach this question with the bedrock assumption that disability is a state of vitality, a way of being that matters in the world, a position from which critical knowledge unfolds. Disability offers a potent vantage point from which to grapple with climate change and environmental harm.
As a scholar and activist, my commitments are shaped by and indebted to the environmental justice movement, a movement led in large part by women of color whose organizing responds to the brutal intersections of race, class, and environmental harm. Environmental justice organizing responds to a core inequity: that environmental harm is not equally distributed. Structural violence—environmental violence—drives widespread disability among brown, Black, and poor communities. 6 Likewise, the climate justice movement recognizes the way climate disruption exacerbates pre-existing patterns of structural equality; it intensifies the effects of racism, classism, colonialism, and gender inequality. Climate justice makes the ethical stakes plain: communities of color and poor communities in the United States and around the globe are simultaneously the most affected and the least responsible for climate change. 7 In this article, I build upon powerful coalitional organizing that is already underway in disability justice circles, led primarily by queer and trans disabled people of color. 8 I ground my work in a recognition long recognized by disabled theorists and activists of color, a recognition with which white disability theory and activism has often failed to grapple: we cannot adequately consider disability without contending with racism, colonialism, and state violence. 9
In this article, I illuminate interconnections between disability politics and environmental justice movements. I argue that critical work emerging in disability activist and scholarly circles can deepen environmental justice commitments in vital ways, just as the epistemological insights and the political work of environmental justice can enrich disability theory and activism. I also argue that the political and affective knowledge produced in disability communities is a vital and often overlooked resource in an age of climate change. I begin by analyzing the portrayal of disability, environmental harm, and social violence in "Dirty River Girl," a prose poem by queer disabled femme writer of color Leah Lakshmi Piepzna-Samarasinha. Piepzna-Samarasinha's work models a powerful approach to navigating a key tension for disability-centered environmental action: a means of simultaneously opposing the harm that environmental damage does to body-minds while also claiming disability as a vibrant and meaningful part of social and political identity, a stance I call "disability embrace." I suggest that holding together this set of complex political commitments and emotional affinities allows activists and theorists to both recognize and resist environmental harm, without casting disability as a solely negative condition. Rather than framing disability as a tragedy, such a stance simultaneously recognizes disability as a site of social violence and also claims it as source of critical embodied knowledge and political resistance.
After my analysis of Piepzna-Samarasinha's disability environmental justice claims, I identify three spheres in which disability insights can illuminate crucial matters of environmental concern. First, I argue that applying disability studies and disability activist insights to the analysis of environmental damage reveal the political stakes of diagnosis—the way power contours how, when, and to what ends human and ecological impairment becomes recognized. Second, I show how critical engagement with disability theory can illuminate pervasive cultural patterns of invisibility and climate denial. Finally, I suggest ways that disability critiques of futurity and cure can reconfigure dominant paradigms for thinking about hope and help fashion a new narrative of what it might mean to live well in the Anthropocene.
To illuminate how disability experience might contour the way we grapple with environmental harm, I turn to "Dirty River Girl," a prose poem by queer disabled femme writer of color Leah Lakshmi Piepzna-Samarasinha that traces the intertwined relationship between the polluted Blackstone River in her hometown of Worcester, Massachusetts and the working-class women of color who live and labor along her banks. In Piepzna-Samarasinha's telling, the Blackstone River that runs through her hometown is "a myth of a pretty woman who had become a monster," a river "put to work like our working-class women's bodies, worked and worked to make someone else money…discarded when her body was too dirty for anyone to want to touch." 10 "Dirty River Girl" tracks the pollution that travels across bodies, making visible the way the poisoning of the Blackstone leaches seamlessly into flesh, the closeness between these two bodies belying what Sandra Steingraber has called "the myth of living safely in a toxic world." 11 Piepzna-Samarasinha recounts unflinchingly the harm that exploitation and profit-seeking has wreaked on both women and water: the lies of the city fathers who deny the thirty-three cancer-causing compounds in Worcester's river, the tentacles that touched her mother's uterus "blooming like algae in a polluted lake." Yet her writing refuses to distance or demonize the polluted river. Piepzna-Samarasinha grounds her prose in a brown/queer/crip ecological intimacy. She evokes the Blackstone's "sweet hips," their rhythm and flow still something the poet can summon, even though the river has been encased in a concrete culvert. Her litany of loss recalls "the first girl I kissed," whose cervical and uterine cancer went undiscovered for ten uninsured years, her words pairing the cool clinical gaze of diagnosis with frission of queer eros.
The recognition of shared harm between human and elemental bodies is hardly a novel claim. That ecological violence ripples through and across ecosystems is a well-established principle in environmental organizing, and the knowledge that pesticides and other toxins pose a public health hazard is a widely recognized (if not uncontested) truth. The environmental justice claim that environmental violence is unequally distributed—that race is a driving factor in determining exposure to toxins and other health hazards, that communities of color face a greater degree of environmental risk as a consequence of entrenched patterns of racism and class violence—has likewise been well documented. 12 Its uneasy embrace by certain publics testifies to the ongoing effects of acculturated denial among white Americans, the desire to "not see" race or class and thereby to refuse their effects, a complicity that rests in part on the depoliticization of harm. 13 While "Dirty River Girl" gives powerful voice to both foundational claims, its signal contribution to a disability literature of environmental justice lies in Piepzna-Samarasinha's choice to couple an unflinching articulation of environmental violence with disability embrace.
Piepzna-Samarasinha calls attention to the presence of beauty and vitality amidst and alongside the realities of illness and pollution, recognizing the impaired body-mind and land as something which can be loved and desired as it is. Near the conclusion of her piece, Piepzna-Samarasinha asks:
What would it take for a river that polluted
to be loved?
What would it take for us to know our bodies beautiful?
To wash them clean?
These are not rhetorical questions, but eschatological ones—questions that point to a gap between what is and what might yet be, questions that invite the reader to yearn for a world in which the love of a polluted river and the beauty of the sick survivor body are self-evident and bone-deep true. And though she asks what it would take "to wash them clean," the next lines of her poem immediately reject the prospect of such restoration. "Nah," Piepzna-Samarasinha says, "not washed clean." What would it take, she asks instead, to know our "sick, survivor bodies beautiful… like the weed trees that would take over every abandoned lot in my hometown?" 14 The choice to prize what is rejected and despised, the decision to cherish what is targeted for violent removal—this is an familiar embrace in disability circles. But in Piepzna-Samarasinha's telling, that love extends beyond the impaired body-mind to also enfold a damaged ecosystem, to claim the polluted river as a site and source of beauty.
"Dirty River Girl" raises and then rejects the cultural fantasy of restoration, the prevailing investment in the notion that all things damaged might yet be "washed clean." Even as Piepzna-Samarasinha refuses the designation of ruin, she also rejects the idea that love of an impaired body or land is dependent upon its restoration to health. By asking the question, she gives voice to the lure of repair, the pull held by the notion that a brutalized body or polluted river might become pristine again. As Eli Clare has observed, that impulse has a powerful cultural sway, manifest in the deep ideological investment many people and systems have in cure. 15 A similar hope, Clare argues, guides environmental efforts toward ecosystem restoration. 16 But rather than investing in the dream that a violated body-mind or damaged ecosystem might be restored to some mythical Eden, Piepzna-Samarasinha invites us to ask: How might we come to recognize beauty alongside the lasting reality of damage? How will we cultivate a fierce, flourishing love for the sick survivor bodies and lands in which we actually live?
Revisiting those last sentences, I am immediately uneasy, aware of the fact that the "we" I have crafted risks a false kinship, a blurring of critical political recognitions. I write as a white woman whose race and class privilege means my own disabled body-mind lives at greater remove from environmental harm. "We" are not equally situated amidst the damaged places, our lives not equally interlaced with risk. We live in a world where some of us increase shareholder value at the expense of other people's cancer diagnoses, a world in which virtually all of us who live with privilege live on the backs of other people's pain. I use the term "environmental violence" to center a core truth: environmental harm is done to certain body-minds—human, animal, vegetal, and elemental—for other people's profit and pleasure. Even when environmental impacts are diffuse, even when the chains of causality can be traced only imperfectly to specific actors, environmental damage is not an amorphous arising, a happenstance that unfolds without an agent. Environmental harm is caused by systems, choices, networks, acts. 17
This recognition—that disability is frequently produced by structural violence—poses a challenge for disability politics, at least as they have often been articulated in majority-white disability communities. In many disability circles, the choice to embrace the disabled body-mind, to value disability and claim it as a meaningful dimension of identity is a foundational orientation: a stance that powers disability politics and drives disability culture. "Without pride," Eli Clare writes, "individual and collective resistance to oppression becomes nearly impossible." 18 Coming to embrace disabled body-minds has been a transformative act for many of us, a process that mirrors feminism's signature claim that the personal is political. 19 Elizabeth Barnes argues that disability pride performs powerful cultural work, that it serves to resist widespread social marginalization and refuse normative assumptions that liken disability to pathology. 20 Yet the affective demands of disability pride are not without risk. In recent years, sick, mad, and disabled voices have challenged the notion of an uncomplicated embrace of disability, calling for more cultural space to grapple with pain, with impairment, with loss. 21 Even as disability communities increasingly make room for a broader emotional landscape in relation to disability, the act of choosing to love disabled bodies, to value mad minds, to honor the sick self remains central to our politics. 22
This affective and political stance—what I am calling "disability embrace"—has sometimes been treated as a precondition for movement work, a litmus test for disability politics. I myself recognize that I am most at ease in cultural spaces that assume disability embrace, in communities that recognize pride as a powerful tool in the work of resisting oppression and refusing shame. Yet I also know this: insisting on disability embrace as a necessary prerequisite risks fracturing potential alliances with other communities of kinship. 23 Within disability studies, this challenge has been articulated most acutely by theorists working at the intersection of race and disability. Consider Nirmala Erevelles' powerful question: "How can acquiring a disability be celebrated… if it is acquired under the oppressive conditions of poverty, economic exploitation, police brutality, neocolonial violence, and lack of access to adequate health care and education?" 24 Or, as Therí Alyce Pickens observes, "disability cannot be embraced wholesale as an identity category when it is created in conditions facilitated by war and capitalism." 25 Though I want to be careful about proscriptive claims about how disability can or cannot be felt, though I want to hold open a complex range of possibilities for making meaning out of disability regardless of the terms under which it comes to shape a life, I find Erevelles and Pickens' recognitions to be urgent and vital. And when it comes to environmental politics? Their insights pinpoint a barrier that has at times bedeviled deeper political alignments between disability communities and environmental justice movements. Environmental harm is injustice. Environmental disability is a consequence of structural violence.
Disability often features within environmental writing as compelling evidence of the cost of environmental harm. Rachel Carson's classic Silent Spring (1962) galvanized American environmental concern through documentation of the risks that chemical pesticides posed to bird life and human health. 26 Environmental justice movements have also worked to name and illuminate environmental violence, to make visible the obscured sightlines that often veil environmental suffering from more privileged consumers. Disability is the means of this exposure. Environmental justice advocacy often works by drawing attention to the pervasive presence of disability in environmentally-compromised communities. It recognizes that disability as a consequence of injustice and demands an accounting. 27 Does this kind of political work further the assumption—often resisted in disability communities—that disability is an undesirable dimension of life, a negative state? Does recognizing disability as (at least in part) a consequence of oppression and a product of structural violence run counter to political efforts to value disabled bodies and minds?
It is not my aim to adjudicate these different approaches to disability, or to resolve them. I am not sure that resolution is possible, or even desirable. Any attempt to do so by a white, well-off, settler academic would surely be an act of staggering hubris. Might these differences be bridged for the purposes of shared political action? For provocative ways forward, I look to the intellectual, artistic, and political insights emerging out of disability justice circles, forged by activists and artists in communities of color who are directly affected by environmental harm. 28 At the same time, I contend: Disabled people (like myself) who live with more substantial privilege have an obligation to recognize and grapple with the ways in which our privilege facilitates disability embrace. We must not—we dare not—make a privileged embrace of disability a precondition for disability solidarity. Instead, I draw attention to the way that disability wisdom can inform environmental justice work, the way that critical political sensibilities and the expertise honed in disability movements can enrich environmental activism.
Disability scholars and activists have long asserted that the determination of disability is not a neutral act, but a political one: a process in which medical authority and institutional expertise is often weaponized against disabled people. In this section, I argue that the attention disability studies theory and disability activism has brought to critiquing the politics of diagnosis can also illuminate a key problem in environmental justice work: the contested question of whether a person or place has been subject to environmental harm. When it comes to adjudicating claims regarding environmental injustice, prevailing economic, political, and scientific systems often collude together to obscure environmental damage, distort causality, and deny the presence of environmental inequality. 29 I contend that critical work being done in disability movements to challenge the presumed neutrality of medical diagnosis aligns in significant ways with the environmental justice movement's call to interrogate the contested nature of environmental damage. Just as disabled people claim the right to name our own experience and challenge the assumption that medical experts possess the sole claim to authoritatively diagnose a body-mind, the environmental justice movement's embrace of citizen science and popular epidemiology aims to democratize access to the practice of assessing and documenting environmental harm. Honing in on the politics of diagnosis, I argue, can help illuminate the contested questions of power and authority that shape the ways that we recognize certain kinds of disability and/or environmental harm while refusing to attend to others.
Diagnosis contours the trajectory of disabled people's lives, shapes the way we are seen, the access we are afforded, the expectations we are guided to fulfill. As Jennifer Scuro argues, the act of diagnosis is "a site of interpretation and inference that needs urgent attention, particularly in its brute authority to make prognostications about 'worthy' and 'unworthy' lives." 30 Rather than treating diagnosis as a neutral statement of fact, Eli Clare describes it "as a tool and a weapon shaped by particular belief systems, useful and dangerous by turns." 31 Diagnosis names and organizes medical knowledge. "At its best," Clare writes, "diagnosis affirms our distress, orients us to what's happening in our body-minds, helps make meaning out of chaotic visceral experiences." 32 Some diagnoses serve as a means to effective, desirable intervention; others route an individual toward dangerous or unpleasant procedures that risk much for the sake of a dubious cure.
Diagnosis is commonly regarded as a stable medical fact, an objective, unassailable truth of the body or mind. Disability communities have frequently challenged the presumed neutrality of diagnosis, and have worked to draw attention to its social and political effects. The social history of science is littered with efforts to map gender, race, and class differences in biological terms, to use disability as a buttress for claims that certain categories of people are "naturally" inferior to others. 33 Critical disability studies scholarship in the field of special education has argued that the tendency to diagnose youth of color with certain diagnoses makes it possible for them to be tracked into special education classrooms, classrooms that often limit students' educational prospects and intensify the likelihood of their criminalization or institutionalization. 34 In a future work, I hope to parse the way these practices align with the rhetorical and pragmatic tendency to treat certain peoples and places as "sacrifice zones," a tendency to dismiss sites and bodies subject to profound environmental damage, to imagine them as sites of ruin. 35 In this section, I hone in on a different dimension of the diagnosis problem: the way in which access to an efficacious diagnosis is not equally available to all.
Diagnosis has often been a divisive force in disability circles, marking differential access to services, supports, and resources. Institutional systems commonly use diagnosis as a straightforward determiner of disability status—expecting doctor's notes and disability certifications in order attest to the presence and validity of a disability. Yet, as Alison Kafer observes, many people lack "a 'proper' (read: medically acceptable, doctor-provided, insurer-approved) diagnosis for their symptoms." 36 The expectation that disabled people must document our body-minds with medical proof has made it much more likely for well-resourced, cisgender, straight white men (and sometimes women) with physical or sensory impairments to make their disabilities legible to the powers-that-be—and thereby more likely to access whatever services and supports might be available. 37 Health inequity—failures of affordability, access, cultural competence, and more—mean that communities of color, queer and trans communities, women, disabled people, people living in poverty, those without (good) health insurance, and other politically-marginalized communities regularly face difficulties receiving a diagnosis. 38
And when diagnosis does occur? It can often rebound to the detriment of the diagnosed. Diagnosis does not equally open doors to life-giving medical care, community services, or support. In some cases, diagnosis intensifies medical doubt. June Stein, who lives with Chronic Fatigue Immune Dysfunction Syndrome, describes how diagnosis itself undermines the legitimacy of her body's trouble. "Everyday," she writes, "I had to defend my credibility. The lack of legitimacy surrounding CFIDS came from a media who deemed my hellish reality a mere 'yuppie flu' and a government that flat-out denied its existence … Over and over again, for nine years, I have been trying to convince others that though my cheeks are pink and rosy … I am horribly sick." 39 The experience that Stein describes—the difficulty she and others with similar diagnoses face in having their suffering recognized by medical professionals—parallels in significant ways the difficulty that environmental justice advocates face in having their experiences of environmental harm recognized by authorities. The challenge of having one's situation recognized and authenticated by official channels—whether it is the reality of illness, the presence of environmental harm, or a combination of both—can be difficult, time-consuming, and fraught.
Diagnosis is an instrument of medical authority, marking certain bodies and minds as deficient and disordered. "With the neuropsychologist's signature on my diagnostic papers," M. Remi Yergeau writes, "I was no longer my body's author." Their body, their being, became "a text in dire need of professional analysis." 40 Recognizing the ways in which diagnosis often goes hand-in-hand with presumptions of pathology, disability scholars and activists alike have worked to contest the authority that diagnosis grants the physician. Consider the practice recommended by Cas Faulds, who suggests that individuals and parents rewrite their medical reports, shifting the language of pathology to one of neurodiversity, thereby claiming language that allows them to access appropriate support without compromising their dignity. 41 Faulds' proposal not only highlights, as Scuro notes, the "ethical obligation to rethink and even rewrite the significance of diagnoses." 42 It also enacts a refusal to submit to the presumptive authority of the clinician, a challenge to the power encoded through the official channels of diagnosis.
The work of environmental justice frequently enacts a similar refusal: refusing to accept as unassailable certain statements by scientific, governmental, or medical authorities that deny the realities of environmental harm. The environmental justice movement has a storied history of challenging official reassurances that potential hazards pose no threat to human health. Recall the 1982 protest that led Black church women in Warren County North Carolina to lie down in front of dump trucks, to refuse to let PCB-contaminated soil be dumped in a local landfill. 43 The resistance unfolded despite official state and federal assurances that the landfill was safe—that state-of-the-art engineering could compensate for its close proximity to groundwater. 44 After Hurricane Katrina, when Environmental Protection Agency staffers declared their soil "free of toxic contaminants," New Orleans activists famously challenged those officials to agree to eat a "Katrina salad"—tomatoes, cucumbers, and lettuce grown in neighborhood gardens—every night for ten years. 45 Such practices of protest emerge out of a lived recognition that experts and officials regularly abandon minoritizied communities. In response, environmental health and justice movements claim "citizen science" and "popular epidemiology" as a way to assert their own agency as stakeholders, to articulate their lived expertise—and to contest the presumptive authority of authorized officials and scientists. 46 "As citizens with little or no scientific background take samples and analyze data gleaned from their own communities," Stacy Alaimo writes, "science is shown to be a politically-embedded practice that is too important to be left to the experts." 47
Bringing a disability sensibility to such activist epistemology, I read environmental justice practices of resistance to medical and institutional authority as a challenge to "diagnosis" both on the individual and communal level, especially when medical authority is deployed to silence environmental concern. Consider the following example: Comadres organizer Teresa Leal works for environmental, social, and racial justice on the US-Mexico border, organizing workers in maquilla factories that are notorious for labor exploitation and health-safety risks. She recounts a story that reveals the political stakes of diagnosis, the sharply contested interpretation of the "facts" of impaired health and environmental harm. A Spanish-speaking factory employee sewing Samsonite suitcases came to her because she and her coworkers were suffering severe rashes and bleeding. When she took her complaint to the company doctor, he told her she had mange. "You don't clean your house," the doctor told her. "You live in the dump and that's why you have mange. Because your hygiene is so bad." But when the same doctor told another friend that the bleeding was a consequence of cirrhosis, and a third that it was a sign of leprosy, Leal's friend brought the English-only labels of their product to Leal and received a different diagnosis: the women were bleeding because they were sewing fiberglass. 48
Leal's account makes explicit the role that (mis)diagnosis plays in directing our gaze toward or away from environmental trouble, a move that shares striking parallels with the political work accomplished by social models of disability. Recall disability activist Mike Oliver's practice of reframing the questions used by the British government to "assess" disability—asking not, "Does your health problem/disability prevent you from going out as often as you like?" but "What is it about the local environment that makes it difficult for you to get about in your neighborhood?" Where the official diagnostic tool begins by asking participants to recount "what is wrong with you," Oliver's questions ask the disabled person to hone in on "what is wrong with society." 49 Here, we must be careful. Strict social models of disability have been sharply critiqued by activists and scholars alike for their failures to reckon with the realities of body-mind impairments. 50 Chronically ill activists have challenged the way such claims privilege the interests and experiences of those Susan Wendell calls the "healthy disabled," documenting the ways in which the effort to frame disability solely as a problem of an inaccessible society disenfranchises those who live with significant body-mind trouble. 51 Such is not my intent. To claim the (privileged) disabled body as "fine" save for access failures waylays the critical force of our movements.
As I see it, the political kinship between social models of disability and the practices of environmental justice organizing suggest a different possibility: that the most politically salient move is a shift in how we diagnose the problem—from a model of individual dysfunction to an analysis of collective, communal trouble. In Leal's story, official diagnosis becomes a means of depoliticizing health, taking a collective risk and turning it into an individual failing. The doctor's pronouncement leverages race and class stereotypes to obscure the reality of environmental harm. He protects the economic interests of the company and disenfranchises the maqilla women by privatizing their health concerns. Through the company doctor's diagnosis, the laboring body's own material protest against poor working conditions becomes a sign of shame, a mark of personal or moral failure. But the women refuse those terms. Working with Leal, they articulate an alternative diagnosis rooted in the call for environmental justice: a diagnosis that becomes the grounds for collective organizing. Their diagnosis places the responsibility squarely on corporate practices, on the labor exploitation, racism, and environmental health risk from which the company profits: in which Chicana women swallow shards of glass as they stitch suitcases for wealthy US consumers, who tug their luggage behind them, unaware of the cost.
The story I have just told about the body burdens borne by the maquila women highlights an urgent ethical challenge: the degree to which such harms are rendered invisible to consumers whose choices drive these systems of exploitation. In this section, I will flip my methodological approach and use a series of theoretical and activist insights from environmental justice circles to probe the implications of how we understand invisibility. Environmental thought has urged greater attention to the cultural production of invisibility, recognizing that invisibility is not simply a neutral fact, but a condition that is deliberately created and fostered in order to facilitate profit and deny environmental harm. When it comes to disability, environmentally-informed attention to the structural production of invisibility might help us better parse ableism's effects and theorize more fruitfully the production of invisible disabilities.
Environmental damage—like chronic pain, environmental illness, and a host of other disabilities—often goes unseen. Environmental activists have long grappled with this invisibility as a barrier to political action. Whether advocates are working to document and demand restitution for environmentally-ravaged neighborhoods or struggling to rally institutional responses to climate change, the uncertainty and illegibility of environmental harm is a familiar foe. 52 But environmentalists call attention to the way that the invisibility of certain harms is culturally produced, for specific political ends. Consider one example: Strategic use of sightlines to promote invisibility is a central component of veiling environmental destruction from the privileged gaze. Analyzing the geography of mountaintop removal mining in Appalachia, Rebecca Scott notes that the acute destruction of mountaintop removal is usually "hidden just behind the ridge visible from the road," beyond the gaze of interstate drivers speeding past on their way to more important places. While an educated eye can often pick out subtle signs that indicate the presence of a mine, mountaintop removal "is all but invisible to a casual observer"—just out of sight for those just passing through. 53 Feminist philosophers Shannon Sullivan and Nancy Tuana argue that ignorance is not simply an absence of knowledge—"an accidental by-product of the limited time and resources that human beings have to investigate and understand their world," but a condition that is produced and undergirded by specific social processes. Analyzing ignorance is a political practice. It reveals the power relations that shape what is known and what passes out of sight, what is recognized and what remains imperceptible. 54
Thinking about disability and in/visibility with environmental politics in mind is an invitation to consider invisibility as a structural issue, to recognize it as a practice of power. It leads me ask: What are the specific cultural acts that perpetuate the invisibility of certain kinds of disability experiences, that reinforce a certain kind of un-seeing? How does invisibility depend on the denial of certain testimonies, the rejection of certain kinds of knowledge? Who profits, when disabilities go unnoticed and unmarked? What might we recognize, if we considered the invisibility of most disabilities to be not simply a natural "fact" of the body-mind, but, at least in part, a consequence of refusal, a pervasive cultural failure to attend to testimony that might bear alternate witness?
Let us return for a moment to the account I shared above, in which June Stein names the difficulty of convincing a skeptical public and medical establishment about the seriousness of her chronic fatigue. Like many who suffer from chronic illness, Stein faces a dual challenge to legitimate her experience. The basic truth that the body is an often inscrutable system is made more intense by the realities of living with chronic fatigue, what Emilia Neilsen calls "an unrelenting state of bodily uncertainty." 55 Beyond the biophysical facts of bodily uncertainty, however, Stein calls attention to the cultural scripts that assail the credibility of those who suffer from chronic illness. 56 For those who live with chronic conditions, doubt is a weapon, an epistemological assault.
Part of the incredulity Stein faces comes from the fact that her experience of illness does not match public expectations, a fact that leaves her "trying to convince others that though my cheeks are pink and rosy … I am horribly sick." 57 In conventional terms, we might understand this incredulity as a natural consequence of invisible disability, an inevitable effect of the disconnect between the body's external appearance and a person's inner reality. The distinction between visible and invisible disabilities is itself often framed as a categorical difference, a matter of kind. Some disabilities are visible, so the logic goes. Others are not. But I have come to distrust this assumption, in part because of the way environmental work has pushed me to think more deeply about the cultural construction of invisibility and the political ends that invisibility serves. Bringing those insights into conversation with disability theory, I ask: What are the risks of treating invisibility as a quality of certain kinds of body-minds, a straightforward "fact" of particular diagnoses? Framing invisibility as the property of certain bodies veils the way that invisibility is a cultural product, a fashioned reality rather than an inevitable state.
Here is one thing I know: The tendency to imagine invisibility as a property of certain bodies risks reinforcing a culture of compulsory ability, in which the obligation to disclose lies with the person who "fails" to inhabit a normative body-mind. Those who are invisible must always again perform the labor of making their presence known. While the distinction between visible and invisible disability may make sense as a tactical strategy in certain situations, I worry that our investment in these categories risks reifying this division as "natural." Instead, I contend: Invisibility is a state that owes as much to widespread cultural failures to expect disability and make space for its presence, as it does to the fact that certain forms of difference, pain, or limitation do not register upon the surface of the skin. Invisibility testifies not only to the inscrutability of the body and mind; it also reveals the pervasive cultural fantasy that body-minds are normative unless marked otherwise. It is one manifestation of a deep cultural investment in pushing disability to the margins, a persistent denial of the pervasive presence of disability in our midst.
Disability communities know the cost of socially organized denial. In this section, I will argue that privileged communities turn away from climate change in ways that are strikingly similar to ways in which non-disabled people disavow disability and "overlook" the likelihood that disability will one day touch their own bodies and minds. When I am discussing climate change denial, I want to draw our attention beyond the overt refusals to acknowledge climate disruption as a systematic problem with a human cause. 58 Alongside the vigorous refusals of outright climate skeptics, there is another kind of climate denial—one that is more insidious and far more pervasive. I mean the profound difficulty that many of us face in integrating the knowledge of climate change into our consciousness, allowing its truths to shape our everyday decisions. Rather than allowing this difficulty to pass as a neutral cognitive state, I name it "climate silence"—the rhetorical and mental strategies that communities of relative privilege use to cultivate strategic ignorance and avoid substantive engagement with climate change. 59 By climate silence, I mean to draw attention to the strategies we use to hold integrated awareness of environmental harm at bay: the tendency to flip past an article that lays out bad news, the resistance to learning the science that undergirds climate disruption, the way we give climate change a rhetorical nod in facile conversation about the weather, but rarely consider it a goad to substantial structural change.
This form of climate silence unfolds in strikingly similar ways to widespread patterns of disability denial. Susan Wendell argues that nondisabled people frequently turn away from embodied knowledge of disability, not because an essential hostility toward disabled people, but because of a perverse misdirection of empathy. "If someone tells me she is in pain," Wendell writes, "she reminds me of the existence of pain, the imperfection and fragility of the body, the possibility of my own pain, the inevitability of it. The less willing I am to accept all these, the less I want to know about her pain; if I cannot avoid it in her presence, I will avoid her." 60 Similarly, sociologist Kari Marie Norgaard argues that individual and communal disengagement from realities of climate change is not a result of failure to care, but a means of self-protection against overwhelming emotions. 61 While climate denial is often portrayed as a consequence of greed, inhumanity, or apathy, Norgaard argues that the opposite is often true. Most of us deploy strategies for distancing and denial precisely because "information on climate change [is] too disturbing to be fully absorbed or integrated into daily life." 62 Even as denial accelerates environmental violence, even as it permits a devastating set of social and political effects, disengagement with the realities of climate change may actually be "a testament to our human capacity for empathy," a way of attempting to protect ourselves from grief and pain and loss. 63
When it comes to disability, dominant culture has a whole host of strategies for turning away from disability as a pervasive truth of human existence. 64 Wendell's work acknowledges the way a disavowal of disability is connected to a broader cultural fantasy: the idea that both the body and the world are subject to human control. Tracking the diverse responses to her own experience of chronic illness, she notes the intensity of others' investment in the idea that humans can take meaningful action to avoid illness and suffering, that various strategies—whether advanced medicine, scientific breakthroughs, unbridled optimism, proper diet, fruitful exercise, or other "virtuous" behaviors associated with good health—will allow us to ensure that our bodies never falter. 65 "As long as we cling to this belief," Wendell observes, "the patients who cannot be 'repaired'—the chronically ill, the disabled and the dying—will symbolize the failure of medicine and more, the failure of the Western scientific project to control nature." 66
The cultural practice of disavowing disability has brutal consequences for disabled people. It is intimately intertwined with ableism; it undergirds and drives the realities of violence, discrimination, marginalization, and disdain that devastate people's lives. But even as disability disavowal expresses a deadly and dangerous form of cultural privilege, it also keeps nondisabled people from vital, life-giving knowledge. "Because disabled people's experience is not integrated into the culture," Wendell contends, "most people know little or nothing about how to live with long-term or life-threatening illness…how to live with limitation, uncertainty, pain, nausea, and other symptoms when doctors cannot make them go away." 67 This is crucial knowledge for navigating the Anthropocene, knowledge that has been honed for generations in disability communities, in communities of color, in Indigenous communities, among many peoples who have forged a life on the underside of dominant power. 68
Climate change asks us to grapple with loss, with change, with uncertainty, with fear. This is affective terrain that many disabled people know intimately. Might disability experience offer some meaningful strategies for reckoning with the embodied knowledge of human vulnerability, for gentling the dread this knowledge provokes, and for exploring the possibilities it opens? What might it mean for us, collectively, to turn toward the reality of climate change as some of us have learned to look at disability: to recognize a difficult dimension of the human condition, an urgent matter for intellectual and political attention, one that will affect us all, albeit in different ways? Like other minoritized communities, disabled people have honed critical skills for living with precarity. We too know something about marshalling ingenuity and creativity to adapt to constraint. We are practiced at the art of building interdependent networks of support and community. 69 Disability communities have honed resources for creative adaptation that might better allow us to imagine a life well-lived amidst climate disruption. And, as I discuss in my next and final section, the emotional insights cultivated in disability communities offer resources for turning toward the realities of environmental loss, for tangling with grief, for honoring difficult truths.
Disability experience offers a vantage point from which to rethink hope, to release some of the desires that many of us hold in the face of an uncertain environmental future. Hope is often heralded as a powerful motivator for climate activism. Yet, as I see it, a recurring problem shapes dominant cultural scripts about hope: the notion that we "have hope" when we feel a sense of personal agency and control over our circumstances. To illustrate what I mean, consider psychologist Suzanne Moser's account of the role hope plays in catalyzing environmental responsibility and motivating collective action to address climate change. To be effective environmental actors, Moser argues, people need "a realistic assessment of the threat or diagnosis, a sense of personal control over their circumstances," as well as clear goals, strategies with which to reach those goals, and a sense that we are making progress in moving toward our goals. To that end, Moser urges climate communicators to "learn to better hold up a positive future," to emphasize that "concerted efforts" can still "make a positive difference." At the same time, she maintains, "fostering true hope is not erasing fears or doubts, but facing reality full on, while banking on promising strategies and uncertainty." 70
I cite Moser's discussion of hope not to single out her ideas for particular critique, but because her discussion illustrates an understanding of hope I find pervasive in popular culture: hope is linked to agency, control, and the notion of progress. But I confess: I am no longer sure this kind of hope is possible, when it comes to climate change. I am not convinced that a realistic assessment of the threat can coexist with a meaningful sense of control over the future. Pinning hope on the possibility that we can stem the tides and somehow arrest loss is a fantasy, an illusion that threatens to shatter our hearts. Instead, I want to ask a different set of questions, a set of questions I have learned through my own engagement with disability cultures, questions that flow also out of critical race studies and indigenous studies. What if we approached climate change with the bedrock recognition that the situation is bad, and that it will get worse? What if we acknowledged, truly, that the prognosis is difficult, that it does not lend itself to good news. While I believe we can and must work to mitigate some of the negative effects of climate change, I think we must let go the increasingly facile question, "What are we going to do to stop it?" and turn our efforts instead to a different question: How might we make climate disruption more survivable, less unjust? How might we remind ourselves that even alongside a diagnosis that paints the future in a difficult light, that life is still possible, that life can still be flush with pleasure and satisfaction, even when it is not when it is not the life we might have chosen, not the future we might have desired?
Disability experience offers critical insights for navigating these questions, for affirming the possibilities that lie beyond conventional notions of "hope" that rest on a brighter future or a return to a beloved past. Consider Rabbi Elliot Kukla's assessment of chronic illness as "a long, slow detox from capitalist culture." 71 For Kukla, this move is not simply an embrace of life as meaningful beyond conventional measures of productivity or success, a call that has been widely recognized as a counter-cultural value emerging out of disability communities. 72 Kukla's self-understanding also entails a move away from the teleological, future-oriented discourse of "getting better" or its past-seeking counterpart: the dream of being "restored" to health. While dominant culture commonly expects that people who are sick will invest all of their resources—physical, financial, emotional, spiritual—in striving for a better future or a return to an idealized past, Kukla describes how he gradually "stopped hoping to be well, or even pretending that I lived in that future-heavy land of hope anymore. I stopped trying to 'overcome' my body and started living a present-tense life in chronic illness." 73 Kukla's account of his "present-tense life" represents a strong challenge to the prevailing cultural imperative to trust in a better future, what Jasbir Puar has called the "it gets better" narrative of neoliberal regimes. 74
The incisive cultural critiques disability activists and theorists lodge against curative thinking have striking implications for climate change. Take Eunjung Kim's insight that cultural investments in cure are often about "folding time:" making "the present disappear by replacing it with the normative past" while also flashing forward to an idyllic "normative future." This collective commitment to cure does not stay securely within the realm of biomedicine. "The drama of cure," Kim observes, "has expanded from the possibility of curing disability to attempting to "cure" environmental loss, defying the extinction of species and to "cure" the emotional experience of loss, defying mortality itself." 75 Eli Clare gives powerful voice to this yearning for a lost ecological past:
Many of us mourn the vacant lots, woods, and swamps we played in as children, now transformed into landfills, strip malls, and parking lots. We fear the far-reaching impacts of climate change … We long for the days when bison roamed the Great Plains and Chinook salmon swam upstream in the millions. We desire a return. 76
While the techniques of ecosystem restoration can sometimes bring renewed wholeness to certain lands, while they can in some ways offer an antidote to loss, Clare asks his readers to recognize that some "damage may be irreversible; some ecosystems, irreplaceable." 77 This recognition that technologies of restoration have their limits is a refusal of the fantasy of human control over nature, a release of the idea that we can always "fix what has been broken." 78 Here too, the curative impulse can be a kind of hubris, a belief that we can force our future to reflect a carefully curated image of a longed-for past.
Disabled writers, by contrast, often articulate a relationship to time and place that is rooted in the complex present, a recognition that satisfaction and pleasure can be found amidst rather than beyond the realities of limits, loss, and uncertainty. Recounting the pains and pleasures of chronic illness, Piepzna-Samarasinha writes about the "hard beauty of this life, built around all the time I must spend resting." 79 She writes crip experience as an unflinching encounter with violence, oppression, and bodily limits—and also as a source of vibrant, particular joys. She describes "the secret bliss of bed," the place in which she spends many sick hours, "draped in pillows, red and plum sheets, surrounded by good art to look at, curtained by plum sari fabric. This is my place of power, the fulcrum, the place everything emerges from." 80 That secret bliss does not erase the difficulties and the discomforts of being ill; it does not displace pain, but exists alongside it. Kukla likewise describes the way the experience of being sick has heightened his awareness of the vivid, sensual pleasures of the present: "sunlight outside my bedroom window, my dog's velvety fur, a cool breeze in my garden, richly colored flowers." 81
The embrace of a complex present—the simultaneous coexistence of grief and beauty, satisfaction and loss—opens also to an embrace of futures in which such realities continue to intertwine. None of this overwrites the material reality of harm, of wrongs done to flesh and to elemental bodies. None of this eclipses the fact of violence, the truth that environmental privilege and climate irresponsibility tears into lives and loves, steals breath, sabotages futures. None of this erases anger, or grief, or guilt, or loss. But it makes room, in Therí Alyce Pickens' words, "for sense meanings other than abjection. Say, joy and pleasure." 82 Beyond the teleological push to redemption and repair, beyond the thrust to make a good future contingent on cure, there lies a different land, a different knowing: a recognition that even the fractured places, even the things we once named ruin, can still be limned with beauty, with vitality, with life.