Winter 2021

Winter 2021 cover of a Dream Puppet co-created by artists with disabilities, directed by Marina Tsaplina and installed in a low-lit, old growth forest in Montana’s Yaak Valley. The puppet is constructed using various materials and has wheels and a head.

IN THIS ISSUE, we gather a selection of writers and artists whose experiences broaden our understanding of sickness and disability, and to foster a conversation among them about how the body informs our perception of and engagement with our surroundings. In “Age of Disability,” Sunaura Taylor follows a community threatened by toxic groundwater that fights ecological ableism. In “The Long View,” Sarah Capdeville faces autoimmunity and an ecosystem caught in chaos. Taylor Brorby lives with diabetes in the era of climate crisis in “In Range.” An enchanted puppet restores care for life in Marina Tsaplina’s “The Animate Earth.” Glennis Redmond writes about how labor, lineage, and cancer are held by the land. In “Retriever of Souls,” Amy Irvine’s daughter Ruby McHarg and her dog navigate a forest of epilepsy. Enjoy columns by Lisa Wells, Meera Subramanian, and Aimee Nezhukumatathil, and more. This entire issue is art directed by Georgina Kleege, a blind scholar who has consulted the Met and the Tate on access and equity.


Age of Disability

The Sonoran Desert with Sky and Landscape
Photography Courtesy of the Author

ON JUNE 21 OF THIS YEAR, the Tucson Airport Remediation Project (TARP), a twenty-seven-year-old water treatment facility, was shut down. The area’s municipal water company, Tucson Water, was facing the reality that the system was soon to be overwhelmed by chemicals it was not designed to treat. The contaminants headed toward the facility were a family of chemicals called per- and polyfluoroalkyl substances (PFAS), known also as “forever chemicals” because they don’t degrade or break down under natural circumstances.

The TARP system was built during the mid-1990s, a decade defined by climate denial. It was designed to treat contamination of industrial solvents discovered in the 1980s, when fossil fuel industry leadership first planted plans for that denial. The contamination itself took place between the 1940s and 1970s, during a time of mass industrial contamination, but before the atmosphere of our planet had been drastically altered—before climate change was widely known to be an existential threat. This pollution is old, nearly eighty years old, hardly a crisis that feels urgent in an era when our newsfeeds are filled with new climate catastrophes every day.

Yet, here in Tucson, deep under the record heat waves cooking the saguaros and coyotes and people, lies an aquifer existing with chronic contamination, which will require likely indefinite treatment for the original contamination that took place half a century ago. The people who live with this aquifer, a largely Mexican American community on Tucson’s south side, are also still in need of medical care and supports for the impairments and illnesses that the previously discovered contamination caused.

I have been researching this particular treatment facility and the contamination that led to it being built since 2017, and it is clear to me that the shutdown of TARP exemplifies a larger issue: the reality that treating environmental harm and its multifaceted effects on the health of humans, animals, and ecosystems is a long-term, enduring, and at times incurable process. It is a reminder that, for many ecosystems, creatures, and people on this planet, the coming decades of environmental crises will stretch not only toward death or health, but also something else—something impaired, precarious, dependent, filled with loss and struggle, requiring assistance, accommodation, and creative forms of care.

As a disabled person I recognize this as disability. Although past environmental movements in this country often focused on the protection of landscapes understood as pristine, untouched, and wild, today those fighting for the environment work with an understanding that nature has been altered and damaged in profound and serious ways. What we live with in the present and will for decades to come, even under the best-case scenarios, is mass ecological disablement of the more than human world, a disablement that is utterly entangled with the disablement of human beings. Given this, it seems vital to consider what forms of care, treatment, and assistance this age of disability will require.


In 1951 Tucson became the home of Hughes Missile Systems Company (now Raytheon), a major player in postwar U.S. military industries. Hughes contracted out the newly built Air Force Plant #44 on the south side of the city and within a year was manufacturing radar noses for the Northrop F-89 Scorpion fighter interceptor aircraft to be used against North Korea. In 1952, only a year after opening, the plant began disposing large amounts of industrial solvents and heavy metals, in particular trichloroethylene (TCE)—an airplane degreaser used to clean electronics and aircraft—into large open-air pits or lagoons. These lagoons were only some of the dumping grounds. Abandoned wells, desert washes, discrete fences, and the desert floor all became sites for waste, not only by Hughes, but also by the Air National Guard and a variety of now defunct defense and electronics industries.

Over the three decades during which these lagoons were used for waste disposal, the chemicals would at times overflow and leach into the surrounding landscape, stressing and eventually killing the mesquite and cottonwood trees and other plant life in their path. Wildlife drank from the open pits and became ill and died. Tohono O’odham representatives protested the disposal of wastes from Hughes, which were flowing through desert arroyos onto O’odham land, where their cattle would drink it. From the toxic lagoons more than four thousand gallons of TCE, and a large variety of other body-harming chemicals, slowly flowed downward through fewer than a hundred feet of porous earth below, entering Tucson’s regional aquifer and filtering into the groundwater. The chemicals traveled northwesterly, entering the sand, gravel, and clay that made up the region’s geologic matter— moving with gravity underground toward the north-flowing Santa Cruz River. The river was spared the contamination, only because the contaminants reached municipal and private wells first—wells from which the people of the south side bathed and drank. The “TCE plume,” as it came to be known, eventually reached out ten square miles from south to north, and a mile and a half east to west.

Although many of those living in the area had been there for generations, many more had relocated after one of the oldest and most vibrant Mexican American neighborhoods in Tucson, La Calle, had been demolished in a racist downtown revitalization plan in the 1960s. (A typical case of environmental racism and Native dispossession through contamination, the impacts of the pollution on residents went unacknowledged for nearly thirty years—even after the area became a Superfund site in 1981.) Residents began to notice their plants would die when they’d water them. Their dogs and cats became ill. Many people were diagnosed with rare illnesses: lupus, testicular cancer, brain tumors, leukemia; babies were stillborn, or were born with congenital heart impairments or other disabilities.

Regardless, communities on the south side endured years of racist and classist accusations that their conditions were their own fault. As alarm grew and suspicion fell on the lagoons, Hughes spokespeople and the Pima County Health officials stated at public meetings that, although people in the area were disproportionately becoming sick, it was not a result of pollution, but because they were “genetically disadvantaged.” They were depicted as having made poor reproductive choices, having maintained a poor diet and lifestyle. Residents were told during meetings with city officials that they were getting sick “because of the chilies and beans they ate,” and the mostly women organizers were dismissed as “hysterical Hispanic housewives.” They were, the statements suggested, just predisposed to illness.

Although the Environmental Protection Agency’s Superfund program eventually began to oversee the treatment of the groundwater, the thousands of people made sick did not receive treatment. Environmental remediation, city, industry, and EPA officials made clear, ends at the threshold of the human body. In response, community members appealed to the Arizona senate, which eventually appropriated $250,000 for a community health clinic focused on TCE-related health concerns. The funds were granted, despite numerous Republicans still objecting to the “phantom illnesses.”


This is ecological disablement: the profound alterations to the capacities and functioning of an entity or system.

During my time in the desert, I came to understand that the Hughes Aircraft lagoons, and the broader industrial contamination of which they were a part, produced disability in myriad ways: locally through the contamination of the water supply, internationally through the war industry, rhetorically through legal and political frames, and across species and environmental boundaries, from humans, to mesquites, to cattle, to aquifers. Over the years of my research, I came to think of the web of injury I was mapping out as a disabled ecology—webs of disability that are created, spatially and temporally, when ecosystems are corrupted and profoundly altered. Disabled ecologies are the material and cultural ways in which disability is manifested and produced among human and nonhuman entities. The more I learned, the farther these injuries reached, and while they told stories of often debilitating and sometimes life-ending injuries, they also clearly mapped out alternative modes of connection, solidarity, and resistance.

In Arts of Living on a Damaged Planet, Anna Lowenhaupt Tsing, Elaine Gan, and their fellow editors suggest that, for humans and nonhumans alike, the condition of the Anthropocene could be articulated as “suffering from the ills of another species.” They find climate chaos, pollution, and extinction increasingly presenting as catastrophic changes to relational networks between living and nonliving beings. This attention to relational harm (and at times relational flourishing) is an increasingly important thread in environmental work, and disability is an integral and urgent part of this relationality that is rarely if ever addressed. Responding to our current regime of environmental devastation requires that we must learn to exist with multispecies disability, to “stay with the trouble” (as Donna Haraway does) or “live in our messes” (as Tsing does).

The word disability is most often invoked in an environmental context as a harrowing consequence of environmental harm— the biological impact of toxic waste, polluted water, and chemical poisoning on the human body. Although such analysis is vital, it sits in tension with how disability activists and critical disability perspectives have largely framed disability over the past three decades: as a political identity, and as an integral part of the human condition that is fundamentally shaped by cultural, economic and historical circumstances, one that has generative and worldmaking aspects. As people, animals, and ecosystems across the world increasingly experience the disabling impacts of the climate crisis, mass extinction, and the chronic effects of decades-old contamination, it seems more important than ever to ask what we can learn from both of these understandings of disability together.

To begin to explore this question, it is necessary to examine other—often unmarked—ways in which conceptions of disability and illness shape environmental issues, as disability actually plays a far more ubiquitous role in environmental conversations than one might think. Although the debilitating impacts of pollution, extraction, extreme weather, and other environmental crises on human bodies and minds have increasingly become a part of environmental discussions over at least the past half century, what is less evident is just how much conceptions of health have long constituted the way environmental damage is itself understood. Indeed, environmental degradation is already regularly conceptualized by a broad range of scientists, policymakers, theorists, and activists through narratives of health and impairment.

Bill McKibben, for instance, more than a decade ago in his book Eaarth, described our altered planet as a paralyzed patient whose body is no longer working as it used to. Four years later, Naomi Klein poignantly described the damage caused by the BP oil spill through the lens of reproductive disorders. Bruno Latour has pointed to the “mutation” of the atmosphere caused by climate change, while environmental humanities scholars are increasingly theorizing the Anthropocene with language of monsters, mutants, woundedness, and illness. Today, it seems that barely a day goes by without a politician, scientific report, or government agency referring to the collapse of Earth’s life support systems, or the decline of ocean health, or the myriad diseases that are impacting whole species.

Such language is not mere metaphor. A scientific basis for what became known as “ecosystem health” emerged in the 1970s as various environmental scientists started mapping out the similarities between diagnostic challenges at the level of the individual and the whole ecosystem. Today, a variety of government agencies and scientists work to address ecosystem health across a wide variety of disciplines, maintaining numerous metrics and indicators to analyze ecosystem health.

One could also look to the language of ecological risk assessment, which uses concepts such as “impairment” to understand and analyze the health of ecosystems. An ecosystem is impaired if its “condition has departed from an acceptable state in a way that is ecologically or societally significant.” The EPA also uses such language, defining “impaired waters” as the “detrimental effect on the biological integrity of a waterbody caused by an impact that prevents attainment of the designated use.” According to the EPA, close to half the rivers and streams in the United States are “impaired waters.”

In standard accounts, ecological metaphors of health are often traced back to conservationist Aldo Leopold, whose concept of “land health” understood health as the capacity of the land for “self-renewal.” This genealogy, however important, sidesteps Indigenous epistemologies that have long understood the environment as kin, or even an extension of one’s body. Native scholars and communities often relate to nature not as separate from human culture, but as family that can be maimed and made ill. For example, when asked how Native people can reclaim relationships to homelands in urban spaces when the land or water is too polluted to swim in or eat from, Leanne Simpson, a Michi Saagiig Nishnaabeg scholar, writer, and artist, has this to say: “You do not abandon your mother when she is sick. You do not abandon the land because it is contaminated or encroached upon.”


The original treatment towers for the Tucson Airport Remediation Project.

The original treatment towers for the Tucson Airport Remediation Project.


What is at stake when we shift to a language of disability to describe our damaged world? Some may hear such language as naively anthropomorphic—a hypochondriac’s Gaia hypothesis, perhaps. But what all this shows is that a broad spectrum of scientists, policymakers, environmental humanities scholars, and organizers on some level recognize the landscapes we inhabit as increasingly impaired, ill, and disabled. For this reason alone, it feels essential that disability communities and critical disability perspectives name this language and be a part of untangling what concepts such as health, illness, and disability mean and what disability justice could look like for an increasingly injured nature. Instead of viewing these moments as metaphor, we could understand them as material. This is ecological disablement: the profound alterations to the capacities and functioning of an entity or system, which limits its ability to sustain itself and others as it previously had, and which alters its reproductive capacities.

To reflect more deeply on what ecological disablement might be and what disabled ecologies are, I want to go deeper into the Tucson contamination—down into the aquifer. Introducing an aquifer is a surprisingly challenging task, if only because, unlike forests and rivers, they’re rarely given names. (The Ogallala Aquifer, which sat at the center of the Standing Rock protests that began in 2015, is the notable exception.) When I asked one generous geohydrologist the name of the south side’s aquifer long ago poisoned with TCE, I was told with a laugh that “hydrologists are not the most poetic people.” Perhaps this lack of naming comes from a sense that they are unfamiliar, neither visible nor navigable, existing in the deep underworld below our own. The geohydrologist I spoke to compared his work to the study of outer space—we can piece together whatever bits of information we can gather, but we must infer the rest.

As anthropologist Andrea Ballestero’s work on a Costa Rican aquifer suggests, this confusion is hardly accidental. If pressed to describe an aquifer, many typically imagine it as a sort of underground tank. However, as Ballestero describes, the image of aquifer as container perpetuates the idea that it can be measured and siphoned to suit a community’s infrastructure, while erasing its fundamental entanglements with other ecosystems— an idea that conveniently benefits those industries and investors that wish to exploit it.

In reality, aquifers are much messier, more akin to a sponge than a container. They are complex and often ancient networks of porous and nonporous underground materials surrounded by water moving wherever gravity guides it. The water that makes up an aquifer occupies the available spaces between grains of sand, larger gravel, or impervious layers of rock and clay. An aquifer is not easily disentangled from other aquifers, or for that matter from the aboveground rivers, streams, and riparian ecosystems to which it is connected. Understanding aquifers this way demands that we recognize them as more than infrastructure, and instead see them as vital parts of the ecosystems that make up our landscapes.

As essential as they are to the global human infrastructure, they remain in many ways unknowable. We are not used to thinking about them in any other way than through their water output, monetary value, and capacity. In the United States our very laws written to protect the nation’s waters reinforce the invisibility of aquifers. They are, for example, not covered by the 1972 Clean Water Act, which, in a typically anthropocentric move, only protects navigable waters—bodies of water upon which humans can ride a vessel. The only federal environmental law that attends to aquifers is the Safe Drinking Water Act, and even then, it is relevant only when groundwater is pumped and consumed; the act does not even mention aquifers by name, instead referring to “groundwater wells,” once again reducing them to mere infrastructure. Aquifers as ecosystems remain almost entirely unprotected.

So it is not surprising that 22 percent of our nation’s groundwater (a sampling of one in five) tested positive for chemicals at levels that are a concern to human health. Or that more than twenty-one of the world’s thirty-seven major aquifer systems are on the verge of collapse due to depletion. This is why some policies and scientists describe our nation’s aquifers as impaired.

When an aquifer’s water table recedes away from streams, rivers, or other water bodies on the land’s surface, it is said to “lose reach.” As an aquifer loses reach and its water is pumped away, plants and trees that grow along the riverbed become stressed and die. The Tucson Basin, for instance, has seen large die-offs along the Santa Cruz River as a result of pumping over the past half century. Before the aquifer was depleted, the Santa Cruz used to flow much farther and for a much longer period of the year; photographs from the early twentieth century show the dense forests of mesquite and cottonwood trees that used to line its banks. The vegetation became sparser and the river much drier as the aquifer receded. Perhaps because I have a hard time reaching things myself with my own impaired arms, I am captivated by this image of aquifers, streams, and riparian ecosystems being unable to reach one another. I imagine the aquifer reaching out with weakened ability, in a drastically unsuccessful effort to grasp the tree-lined riverbed.

The concept of losing reach can illuminate how relevant a critical disability perspective is to understanding ecosystem impairment. Although environmental policy and science undoubtedly use a diagnostic frame of impairment, on closer inspection the social and political aspects of ecological disablement become evident. Recall that ecosystems are impaired if their condition has “departed from an acceptable state.” What social forces define an “acceptable state”? What about the “societal significance” the definition points to? With aquifers, acceptability and significance have everything to do with utilitarian value to humans: they’re impaired not when the groundwater loses reach with other ecosystems, but when its depletion impacts human consumption. In fact, looking closely at how different ecosystems are defined as impaired, we find that, as with legislative definitions of human disability in the United States, it is the inability to work—to be able to labor and produce capital—that shapes the definition of impairment.

Ecologist Glenn Suter II, the author of the previous definition of ecological impairment, argues that an impaired ecosystem requires categorically different support systems than an unimpaired one. “Just as a paraplegic and a blind person need different assistance,” he writes, “an impaired ecosystem . . . needs different management.” So which impaired landscapes are considered valuable enough to merit multimillion-dollar treatment facilities? And which, due to lopsided values, policies, and power inequalities, are not deemed societally significant, and are thus excluded from systems of care—and therefore at risk of further harm? Just as important, what sorts of treatments are offered and for what ends? How do these decisions intersect with the same sorts of inequity that human communities face when struggling against environmental injustice?

I want to identify disabled ecologies, and recognize our damaged environments as disabled, not because I believe that medicalizing and diagnosing is the answer to environmental harm, but because such naming can provoke a crucial ethical attunement. If our ecosystems are ill, impaired, and disabled, then it seems clear that turning to disabled and ill people for the critical and generative understandings of health, limitation, woundedness, loss, adaptation, and care that have emerged from these communities is vital. Critical disability perspectives show that, with access to health care, social supports, and community, disabled life can be not just livable but flourishing. They insist that, although damage is real, it is also a source of ethical insight, of value, of creativity. If our landscape is disabled, then our need to learn these ethics is urgent.

South side TCE organizers are some of the only people I have come across who deeply understand the aquifer and its entanglements. Many have worked for decades to make sure that it is being treated, even after they or their loved ones have become chronically, sometimes fatally, ill from drinking its water. Although residents here often do associate the groundwater with death, the aquifer itself has been treated with care and kinship for more than three decades. Even though south-siders have not drunk from its waters since the mid-1980s, organizers and community members have stuck with it. They have not abandoned it. Many people might not know that Tucson’s south side was home to one of the first environmental justice movements in this country. A mixture of fierce community organizing, local reporting by committed investigative journalist Jane Kay, and major litigation against Hughes, the city of Tucson, and numerous other parties finally pushed the authorities to acknowledge that at least some of the area’s alarming rates of cancers and chronic illnesses were caused by contaminated water. After it was discovered that the community had been drinking and using TCE-laced water for decades, residents such as Melinda Bernal, Rose Augustine, Eduardo Quintana, Marie Sosa, and Richard Gonzales organized their communities into groups such as the formidable Tucsonans for a Clean Environment. These organizers spent years of their lives making sure that treatment facilities, including TARP, were built. And built well.


With access to social supports, health care, and community, disabled life can be not just livable but flourishing.


South side community organizers had from the very beginning a capacious understanding of what remedial action should include, shaped by their experiences as a largely Mexican American community living with illness and disability. Within less than two months of forming, Tucsonans for a Clean Environment was calling for an epidemiological study of the impacted area, the establishment of an Arizona registry for cancer and birth defects, compensation for injuries, groundwater cleanup, persecution of the polluters, and the firing of city officials who they argued were complicit in environmental racism. Shortly thereafter they also began calling for greater groundwater protection laws and establishment of a health clinic for the community. For three decades, ill and disabled south-siders have articulated a vision of justice that includes treatment for both landscapes and people, and that acknowledges long histories and potential future injury. And remarkably—at least in brief moments—community organizers made such visions real, winning hard-fought battles for health studies, for a say over the Superfund remediation process and the sort of treatment the aquifer and impacted ecosystems receive, and for the health clinic, which, while it lasted, offered a variety of free health care services to those impacted by the contamination. Their organizing also had profound ripple effects, helping to establish two of Arizona’s central environmental agencies.

Grappling with disabled ecologies helps us to recognize and resist ableism in this age of disability—the devaluing, the disgust, the disdain, and the abandonment leveled against those people and ecosystems who cannot attain or hold on to able-bodiedness and the fiction of independence it maintains. Ableist ecologies would have us accept “sacrifice zones” (“permanently impaired” environments in historically expendable communities) of people and lands and animals as the price to be paid for our modern pleasures. For decades, disabled communities have taught us that, although injury and sickness are fundamental to life, our response to injury and sickness is a societal issue. Will we care for disabled community members (human and nonhuman), providing health care, support services, and access? Or will we abandon them?

South side organizers offer us a vision of living with: a refusal to abandon, an insistence on staying with the trouble of a troubled landscape. Repairing the harm done to Tucson’s aquifer will be ongoing. After all, TCE is still present— thankfully at much decreased levels—in the aquifer nearly three decades since the state-of-the-art TARP facility was built, and the community is still living with the impacts of lost loved ones and chronic illness and slowly emerging cancers. As the new PFAS contamination has thrown the question of how to treat Tucson’s aquifer wide open once again, with responsible parties dragging their feet in an outrageous repeat of history, many south-siders who have been following the TCE treatment for decades are still there, speaking up at the quarterly EPA-run Unified Community Advisory Board meetings or organizing in newer groups like the south side–based Las Aguas. Although the south side has not been receiving PFAS-contaminated water, they insist that it is more urgent than ever that immediate action be taken to ensure that the aquifer, and the community, can continue to heal.


Resisting the ableism of environmental harm necessitates that we reflect on the many meanings, implications, and contradictions of disability. This is not an easy task, as a variety of complex questions arise from such thinking. How, for example, can we recognize the insights that disability provides, while also resisting the violence from which disability emerges? Yes, understanding damaged environments as disabled or impaired is certainly complicated, as it risks perpetuating the idea of disability as solely a negative—something to be cured, a problem to be eradicated. On the other hand, it risks relativizing environmental harm; one could imagine corporate polluters co-opting the idea just as they have conceptions of environmental resiliency or adaptation. (There’s nothing wrong with this ecosystem, they might tell us. Isn’t disability a natural part of life? Don’t we all just adapt?)

Challenging both of these impulses requires a more nuanced and political understanding of disability, one that sees that disability can itself be a form of resistance against the very systems that too often produce it. We can think of this as the environmentalism of the injured: the insistence on fighting for a world in which the injured can flourish, while also struggling against those systems and institutions responsible for and benefiting from the injury. Disability may be the consequence of injustice, but it is also a propeller of justice. Critical disability perspectives and disabled, ill, and injured communities are uniquely positioned to be able to imagine the potential of bodies, species, and ecosystems, to demonstrate resilience without depoliticizing or relativizing the violence that brings about change.

Although movements for the environment have at times been fueled by anxieties about disability, they have also been stirred by the relational networks disability exposes and by the visions for the more humane society disability requires. That we are living in an age of disability is not said with pride, but with recognition that there are ways to transform, to find solutions, to center care, interdependency, and expansive visions of access—to create the conditions over the coming decades to learn from what disabled activists call “crip brilliance.”

Turning to the critical and generative understandings of health, limitation, woundedness, loss, adaptation, and care that have emerged from disabled and ill people and communities can help us as we navigate and salvage a changing, imperiled world. There is, as the activist Harriet McBryde Johnson once described it, “the undeniable reality of disabled lives well-lived.” We hope for such lives for our permanently altered ecosystems, for our water, our air, our atmosphere, for the south side community, and the aquifer. O


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Sunaura Taylor is a writer, artist, and assistant professor at the University of California, Berkeley. She writes about the history of TCE contamination in her upcoming book, Disabled Ecologies.


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