Abstract
This toxic autobiography seeks to open the conversation around the intersecting injustices marking the epistemological, material, political, and porous entanglements between endometriosis, the bodily inflammatory chronic condition the author is affected by, and the toxic waste fires raging in the territory known as the Land of Fires, between the provinces of Naples and Caserta, in southern Italy. Thinking with the sprouting intersection of environmental humanities and disability justice, while rooted in a critical environmental justice and transfeminist standpoint, the article uncovers the toxic embodiment where bodies and places are enmeshed. Although a growing body of literature acknowledges the role of chemical buildup and endocrine-disrupting toxins in the occurrence of endometriosis, the author delineates the epistemic injustices that keep this relationship silent in mainstream medical discourses. Through the blend of environmental memoir, embodied knowledge, activist campaigns, and medical literature, the article exposes the accumulation of environmental, medical, ableist, misogynist, and capitalist slow violence that living with endometriosis brings about. While emerging from the materiality of experiencing trauma and pain, the article reclaims the emancipatory possibilities that can be articulated. From the politicization of an “invisible” illness standpoint, the article proposes a toxic autobiography in which transfeminist, environmental, and disability justice politics are collectively affirmed through situated ecopolitics of response-ability that accounts for interdependence and self-determination of marginal bodies and territories.
Eyes blinking in the cold and bright postoperative room, the anesthesia dissolves into tremors. “What was found?” I mumble, my thoughts turning to the interlocking characteristics of restoration and cure. My body underwent excision surgery, the gold standard procedure that radically cuts out endometriosis lesions. Although not considered a cure, it reveals the geography of endometriosis in my body: extensive in size, deep and infiltrating in quality. Endometrial-like tissue was found in my rectouterine pouch, uterosacral ligaments, ovaries, tubes, abdominal wall, nerves, intestines, and rectum, after a twenty-year buildup of symptoms.
Finally, I reached the objective and powerful tool of modern biomedicine: the diagnosis of a chronic inflammatory illness that many doctors dismissed as laziness, all-in-the-head or psychosomatic. The same scientific standard that defines what counts as valid knowledge has historically marked women’s and feminized bodies with repression and violence: from Hippocrates’s misogynist wandering womb origin theory for multiple diseases, to hysteria diagnoses leading to medicalization, incarceration, and death.1 Those who experience chronic illness learn in and through their flesh the objectification and mechanistic gaze of the expert, which holds the privilege of classifying and intervening on bodies. Studies have shown that one in ten people born with a uterus is affected by endometriosis. However, universal access to quality care is impaired by multiple factors.2 It takes an average of 7.5 years to receive a diagnosis, and it becomes more complicated for queer and trans Black, Indigenous, People of Color (BIPOC).3 At the time of writing, I had to learn how to contest the supposed objectivity and neutrality of the biomedical knowledge system, which delayed my access to treatment and ripped away my authority to know and decide about my body. The privilege of pursuing an academic career introduced me to feminist interventions in science and technology studies (STS), political ecology, and decoloniality. I had not anticipated that I would need such knowledge and stories for my own survival. As I entered the hospital and texted with my community of care, the chat of our local environmental justice (EJ) coalition lit up with real-time images of toxic waste fires. While I faced the brutality of my chronic illness, toxic waste was burned around my city, and dioxin trespassed and accumulated into water bodies and animal tissues.
As disability and queer studies scholar Eli Clare proposes, the restoration of health not only involves medical technology but also requires the dismantling of racism, poverty, and environmental injustice.4 While excision surgery exposes bodily consequences, the interconnected processes of toxicant accumulation and social inequalities remain hidden. The surgery echoes the demanded remediation of agricultural fields, water streams, and human and more-than-human bodies from the toxic mix of dioxin, polychlorinated biphenyls (PCBs), and other persistent organic pollutants (POPs) in the southern Italian region of Campania, consequences of the waste emergency and the Land of Fires.5 From before I was born and throughout my lifetime, the socio-ecological story of the territory has been shaped by the dumping, burying, and burning of industrial and hazardous waste—unregulated and regulated, legal and illegal. Campania is a sacrifice zone of capitalist accumulation, where neoliberal defunding policies in public health care intersect with a decades-long environmental emergency regime and a chronic absence of dignified living conditions for working-class communities.6 As the surgical team brought the toughened tissues to light, I recalled the unearthing of toxic waste in my region.
In this article, I reflect on the porosity of inflammation across body and territory, and the flames of activism that feed the intersection of transfeminist, environmental, and disability justice.7 Inspired by the autobiographies of women with disabilities, I use storytelling as a feminist disability strategy to foreground a critique of mainstream medical discourses reproducing violence while uncovering both the insurgence of an environmental disease and propositions for emancipation.8 My approach aligns with Donna Haraway’s suggestion to tell stories that not only describe but also aim to intervene in patriarchal, capitalist, and colonialist nature-cultures.9 I simultaneously engage with the material-epistemological experience of toxic embodiment, particularly the situated knowledge of the inflamed body-territory and the possible ecopolitics.10 Environmental memoirs or toxic autobiographies are a narrative genre within the environmental justice discourse, in which people directly affected or closely related to contamination seek epistemic, socio-environmental, and narrative justice for their lived experiences while fighting against the materialization of uneven capitalist power relations.11 This toxic autobiography engages storytelling as a method to transform everyday experiences in Campania into public knowledge of environmental justice.12
In this article, marginality is understood through the conceptualization proposed by Black feminist activist and writer bell hooks as a space not only of deprivation but also of radical possibility and resistance.13 As a chronically ill scholar-activist, I speak from this marginal standpoint of seeking to know and make sense of embodied environmental injustices in relation, engagement, and empathy with other human and more-than-human beings to articulate the political-epistemological possibilities of response-ability, as subversion from the detached knower and his master’s tools.14 I owe my elaboration to the theories and practices of Black, Brown, Indigenous, disabled, and LGBTQIA+ folks who instigated and participated in environmental and disability justice activism, the feminismos comunitarios y territoriales and the transfeminist movements. Without encountering their words and struggles, storying my situated, political, personal, and collective experience would have been impossible. I think and become with them, deliberately and carefully, while consciously reflecting and challenging the system of privileges I hold as a white, southern European, working-class, cis-passing woman with “invisible” chronic illnesses.
The Land of Fires: Storying Environmental Violence
I grew up in Ercolano, a city built on lava in a strip of land between the Tyrrhenian Sea and Mount Vesuvius in the southeastern province of Naples. During the notorious AD 79 volcanic eruption, the ancient town of Herculaneum together with its human and more-than-human inhabitants were asphyxiated by pyroclastic smoke and coated in magma. The territory has a long history of human, sea, and mountain interconnections. Inside the current borders of the Vesuvius National Park the slopes of the volcano are marked by farmers’ houses where piennolo tomatoes, apricots, and catalanesca grapes have been cultivated for hundreds of years.15
Over time the territory’s socio-ecological features were almost entirely erased: dry stone walls dividing gardens were superseded by iron fences, and the seventeenth-century basalt infrastructure for the transport and distribution of water through public fountains was covered by asphalt roads leading to the highway. As a child I was nourished with the food cultivated in the tiny gardens owned by my mother’s relatives. These small patches remained after my great-grandparents’ farm was expropriated in the 1970s for the construction of the highway and condos. The rural landscape of Cupa Monti survives to this day in my grandparents’ garden where we continue to take care of the mineral-rich volcanic soil by growing vegetables and harvesting fruit.16
Since the 1950s portions of the territory historically exploited for the extraction of construction materials were converted into waste dumps before landfill regulation was established. Still today, just a few kilometers away from our garden, the liminal peri-urban belt between the volcano’s mouth and the most densely populated area in Italy continues to attract and burn waste. The storied landscape that connects my body and my grandparents’ garden to this ancient land is made of fire and incineration.
Over the last three decades the socio-ecological history of Campania has been marked by two interconnected processes. First, since the 1980s industrial waste from northern Italy and other European countries was transported and disposed of, at affordable prices, in agricultural fields, abandoned quarries, and craters, thanks to an agreement between profit-seeking industrialists and Camorra representatives, sustained by institutional silence or connivance.17 Some of that hazardous waste is dumped and burned in agricultural areas, marking the sky with thick, dark smoke. Those who live in the territory know it as the Land of Fires, owing to the burning and spewing of toxic waste. They are bodily aware through irritated eyes and choking airways when approaching the toxic waste fires.18 These fires are composed of materials from industries seeking to reduce their costs and a submerged economy that cannot legally dispose of waste. Discarded materials include medical waste, smoke abatement powders, pneumatic tires, paint and sewage sludge, liquid waste contaminated by heavy metals, asbestos, and polluted earth from reclamation activities produced by the nation’s well-known corporations.19
Second, from 1994 to 2009 the national government declared a state of emergency in Campania for urban solid waste management. Decision making was shifted from local administrations to an ad hoc agency.20 A faulty tender supported by public incentives was granted to a private consortium for the incinerator’s construction, by-passing environmental-protection laws.21 Eventually, following the path of least resistance, new landfills and the questionable reopening of old ones were imposed on communities through the militarization of territories.22 Campania underwent a territorialization process that transformed the region into Italy’s cheap trash can.23 A combination of the trafficking and burning of hazardous waste and the emergency regime resulted in eroded and distorted democratic decision-making processes, bypassing environmental-protection laws and health-care provisions for the profit of public authorities, industrialists, and organized crime, while the socio-ecological wasting consequences continue to this day.24
The national parliamentary commission on the waste cycle and environmental crimes in Campania traced the inclusion of Vesuvius’s seaside within the landscape of contamination. From 2004 to 2013 Ercolano was enclosed within the SIN Litorale Vesuviano.25 In 2014, at the abandoned Montone quarry, excavation work brought to light eighty metal drums containing bitumen and asbestos.26 Two years later, in 2016, within the national park borders, a gigantic illegal landfill at the abandoned Fiengo quarry was seized by local authorities. 400,000 cubic meters of discarded material were found above and below ground, some of which was still burning.
This fueled a countermovement of grassroots activism fighting for environmental and social justice, politicizing the nexus between human and more-than-human health. Enclosed within northern Naples and Caserta’s provinces, the waste emergency and the Land of Fires seemed to have engulfed a specific portion of Campania. Until I studied EJ and joined the regional EJ coalition Stop Biocidio, the familiar patchwork of landfills dotting the landscape stayed invisible, and I was unaware of the relational ecology binding my body to the territory.
Speaking of the ubiquitous exposure to contaminants, feminist technoscience scholar Michelle Murphy articulates how embodiment “is a collective binding of profoundly uneven relations of porosity to exposure.”27 My body, bound to a territory of toxic waste fires and landfills, exposed to dioxin bioaccumulation, grapples with deep infiltrating endometriosis (DIE), embodying the slow violence of Italian capitalist development.28 Even in the 1970s, political ecology forerunner Laura Conti had condemned capitalist profit-making for the manipulation and destruction of life in Italy.29 Through my mother’s placenta during gestation and while growing up, toxicants soaked the territory and permeated my body, erupting over years of chronic pain and hospitalizations. Although pain signaled the inner landscape of endometriosis lesions, nodules, and adhesions since I was ten years old, I could not decipher the meaning until I learned the language of environmental violence.
Environmental violence here is acknowledged through the encounter between the conceptualization by environmental historian Stefania Barca and the transfeminist network Non una di Meno (NUDM).30 Barca exposes how corporate and/or state development policies perpetrate environmental violence on sacrifice zones and disposable bodies “with the aim of reproducing oppressive social relations and political control.”31 Moreover, environmental violence has a twofold effect: it materializes onto disposable bodies, while denying their knowledge over the relationship between contamination and health. In 2017 NUDM published a transfeminist plan addressing gender-based violence; environmental violence was recognized among the manifestations of patriarchy: “We consider . . . environmental violence against women, all living beings and nature in our plan. Here, nature is understood as the ecological-relational fabric within which we are interconnected. . . . We see the anthropocentric, male-neutral, heterosexual model as the dispositif of patriarchal dominance to impose and naturalize the oppression and exploitation upon bodies.”32 Many activists of our NUDM Naples territorial assembly participated in grassroots actions during the waste emergency. From there our assembly has been elaborating on situated socio-ecological history to shape a collective praxis in support of the self-determination of bodies and territories, against environmental emergency regimes and the militarization of waste facilities, while claiming the uneven health impacts of contaminations’ intersecting with multiple oppressions.
Critical EJ and disability justice help illustrate how particular communities of bodies are exposed more than others, especially along the intersectional dimensions of race, class, gender, ability, and species oppression.33 Additionally, environmental violence intersects with capitalist ableism, which discards sick bodies as culturally, politically, economically unproductive and disposable.34 Our experiences in the Land of Fires tell a story of uneven geographies, where intersecting oppressions reveal which bodies carry higher risks associated with the accumulation of POPs from industrial production and its waste disposal.
The Situated Knowledge of an Inflamed Body-Territory
Disability justice, as a social movement, is rooted in a framework seeking liberation for all beings from worth being defined by productivity under the capitalist system.35 The intersection of environmental humanities and disability justice allows engagement with the porosity of substances and selves, casting light on the relational characteristics of disability and health, rather than portraying them as fixed or static.36 From these articulations, we can delve into the worlds in which disability is a site of knowledge production about socio-ecological processes, and we understand ourselves in relation to one another and the environment.37 In Situated Knowledges Donna Haraway provides a feminist critique to objectivity in knowledge production: “We need to learn in our bodies, endowed with primate color and stereoscopic vision, how to attach the objective to our theoretical and political scanners in order to name where we are and are not, in dimensions of mental and physical space we hardly know how to name. So . . . objectivity turns out to be about particular and specific embodiment.”38
The first time I experienced the crafting of situated knowledges was during the Land of Fires assemblies. In a convergence of social movements and grassroots committees, matters of concern were socialized, epidemiological studies discussed, self-training events organized, and everyday lived experiences became the grounds for politicizing the relationship between bodies and territories. Despite the publication of several scientific studies examining the incidences of illnesses and the waste emergency in Campania, none provided irrefutable evidence in the form of a causal relationship between the presence of hazardous waste and the multiple cancers, leukemias, miscarriages, and rare diseases.39 While national and local authorities vilified Campania’s residents as dirty, uneducated, and responsible for their individual health conditions, women from the most marginalized areas of the region, chosen as waste repositories, took the political space of contestation.40 Groups of women activists such as Mamme Vulcaniche and Le Donne del 29 Agosto elaborated the nexus of interdependence between a ravaged environment and the rising number of illnesses. The social reproduction work they performed in the family and wider community became the ground for their situated knowledge over the health of the territory via the recognition of a growing burden of care work for the ill and sick.41 They interrupted the reproduction of profit accumulation, politicized their everyday lived experiences, and decided to speak up against the individualizing discourses over health and disease.42
Learning from them, chronic illness became my standpoint in the pursuit of survival, together with a community that came together at rallies against unwanted waste facilities, at the agroecology farm fighting against land commodification, and in the everyday utopias of assemblies to reclaim dignity over our bodies and territories. The enmeshment of flesh with place deviates from the Western gaze of distancing the human from the rest of the material world.43 The relational nature of my body with territory became more evident in the encounter with Indigenous and decolonial thinkers and activists, especially from the feminismos comunitarios y territoriales, where the body-territory is seen as the first political territory to defend against neoliberal, colonial, patriarchal, and environmental violence while representing a place of collective politicization and liberation.44 I reclaim the inflamed body-territory in the Land of Fires as the political space where multiple oppressions intersect and from which situated and embodied strategies for environmental justice arise.45
With every inhale, every ingestion, the surrounding environment enters me; my health is tied to the health of the territory, including the access I may or may not have to dignified health care. Hence, speaking from my inflamed, sexualized, contaminated, ill body in pain represents an act of rebellion toward emancipation in the social movements as much as in the academy. To start from oneself does not aim to individualize concerns; rather, it expresses how to elaborate “response-ability” toward the collective experiences of pain, discrimination, and illness.46 A transfeminist disability and environmental justice struggle in the Land of Fires can rise from marginal body-territories.
Over time I came to learn the arts of alienation from the vessel that carries me around. The Western biomedical model has dispossessed women, LGBTQIA+, Indigenous, racialized, and feminized subjectivities of the knowledge and languages to voice our pain.47 When my first period occurred at eleven years old, I bled for longer than forty days. My mother took me to a gynecologist who was as old as I was scared. She spoke for me with concern, while he dismissed the case as “menstrual irregularity, which is normal the first time around.” Memory hits painful areas that have to do with gaslighting, misogyny, and abuse, when with a supportive tone he told my mother I had a large uterus, a godsend for pregnancy. With the knowledge I bear today, the man possibly saw a uterus affected by adenomyosis, which was only diagnosed twenty-one years later. During teenage life, I started missing school because of intense menstrual pain and heavy bleeding. This began to have an effect on my everyday life: often, I could not attend volleyball practice, or I would faint after standing up for too long at concerts and demonstrations. I came to experience deep radiating and shooting pains in my limbs and perineum followed by walking difficulties. Back strain occurred regularly. Nobody around felt as much pain, disorientation, and anger as I did. I was mad at myself for being broken and difficult, and I hated my body since puberty began. While everyone else’s body became a medium of pleasure and discovery, endometriosis tissue choked my insides, feeding the increasingly familiar and disruptive pain. At the same time, strata of uncollected urban waste appeared more frequently in the city landscape. Just as I was unaware of the layers of the toughening endometriosis tissues causing the pain within me, the increasing strata of trash didn’t speak of the hazardous industrial waste flows arriving from northern Italian regions or European countries and the environmental injustice they represented. In keeping with the anti-meridionale discursive tradition, mainstream narratives concerning the waste emergency spoke of my territory as uncivilized and backward, a place where people don’t comply with rules, are associated with Camorra, and ignorantly living with trash.48 I came to believe that if my place was discarded both materially and symbolically, I must have been trash too.
As I entered my twenties my digestive system started to feel uneasy; multiple physicians suggested it was stress-related. They proposed I take it easy instead of struggling through university exams. At the age of twenty-five I missed many workdays, fainted while bartending, and had chronic abdominal, back, and joint pain. Four years ago emergency-room visits were the norm as the flare-ups became more frequent and painkillers including opioids ceased providing any relief. The fear of something scary and bad happening to my body surfaced. Blood tests, MRIs, and ultrasounds were run without finding anything leading to an explanation except for white blood cells rising above the regular ranges, voicing an ongoing inflammation whose roots were unintelligible to the experts. Dozens of different gynecologists, endocrinologists, immunologists, orthopedists, and gastroenterologists received sizeable payments for their consultations, and the diagnoses were wide-ranging: nothing at all, asthma, allergies, depression, polycystic ovarian syndrome, dermoid cysts, anxiety, hypothyroidism, myomas, scoliosis. Some diagnoses were confirmed, while others were rejected over time. The only durable conditions were my worsening health and the irrefutable fact that medical doctors remained the experts of my body, the signifiers of truth, while never experiencing a single day of what it feels like to live in it.
From the onset of symptoms it took me twenty-two years to receive the endometriosis and adenomyosis diagnoses. The spatial arrangement of pain diffused over time, extended and occupied almost all terrains, from psychological to muscular. I was left to myself, a territory of vulnerability, disability, and invisibility, words I did not learn to politicize yet. Despite my ability to dismiss the signs as I was socialized into questioning myself, endometriosis took over my body. In the meantime I became interested in environmental politics, graduated in political ecology and joined Stop Biocidio. The accumulating pain functioned as an instigator for educating on endometriosis and environmental violence, reaching out for help to find a community of endo advocates and transfeminist and EJ activists with whom to learn and fight. Chronic inflammation is politically relevant to this story because it reveals the production of disposable bodies and territories. Chronic inflammatory pain sparked the need and desire to “stay with the trouble”: to survive and dismantle the very conditions on which the materiality of environmental and epistemic violence thrive.49 The embodiment of disability echoes the ravaged and contaminated territory cast aside. But it is also the standpoint from where we can explore our affective, political, and ecological ties.50
Against Epistemic Violence
Years of collective organizing opened up a possible path toward different modes of living our already damaged lives, while aiming at dismantling the toxic discourses of hegemonic knowledge and infrastructures that sustain oppression in the first place. But how can we fight for EJ while holding conceptualizations of health that do not reproduce ableist, sexist, and racist conceptions? I believe it is the most compelling collective work we must do to imagine liberation from violence, while keeping justice as the compass of our methods.
In the current socio-ecological regime in which the cost of environmental violence is borne by those who have less power, to gather, build, and claim collective counter-hegemonic knowledge over what is framed as scientifically complex, expert-led domains of evidence is a form of resistance to epistemic violence.51 From a decolonial stance, epistemic violence impedes the development of epistemological creativity dedicated to the transformation instead of the objectification of social phenomena.52
In the 1950s Rachel Carson exposed how the heavy impact of private funding in research labs and universities determined the conditions for the dominant scientific paradigm to normalize environmental and health aggressions as a sign of progress.53 The context of radical uncertainty in the biomedical sciences provided and still provides space for the cumulative, intergenerational, persistent, and synergic effects of chemical exposure to be rarely questioned.54 Evidence is often contradictory, and regimes of scientific rigor do not abide by the precautionary principle. The slow violence of environmental contamination often occurs over long spans of time and makes the occurrence of exposure difficult to prove.55
In 1993 a group of researchers first advanced a hypothesis on the role of exposure to endocrine-disrupting environmental pollutants in the etiology of endometriosis.56 Despite international attempts to regulate, reduce, and ban POP emissions since the 1980s, these chemicals continue to show bioaccumulation characteristics in food chains.57 Multiple studies tackle the links between endocrine-disrupting chemicals and increased incidence of endometriosis, showing higher concentrations of such compounds found in the blood of people with endometriosis. This literature addresses the adverse impact of exposure to synthetic organochlorine chemicals in the pathogenesis of endometriosis.58 However, such findings do not make it to doctors’ desks, let alone the wider public.
Current mainstream discourse on endometriosis erroneously casts it as a reproductive illness, reinforcing the assumption that it only affects cisgender women and their reproductive capacity.59 Although infertility could be a common consequence of endometriosis, the primary focus on cis women and fertility hinders the conversation on the devastating, life-altering conditions of embodying chronic pain, and renders other subjectivities invisible. This toxic autobiography crafts a politics born out of the materiality of life, what Chicana feminists Cherríe Moraga and Gloria Anzaldúa call “theory in the flesh.”60 Hence I turn to life experiences to uncover the reproduction of discriminating practices and discourses. At almost every doctor’s appointment, pregnancy was genuinely proposed as a cure, no matter what my age, life goals, possibilities, and desires were. As I raised concerns over my own health and life quality and confronted the idea of pregnancy as a cure to my illness, doctors responded with unsolicited and violent assumptions about my attitude being “too feminist.”
To reclaim self-determination and well-being for the affected requires the dismantling of ableist, paternalistic, and heteronormative discourses. Environmental justice and ecofeminist scholar Giovanna Di Chiro exposes how environmentalist movements can sometimes reproduce discourses of eco-heteronormativity that tap into public fears by overly focusing on the gender-bending consequences of toxic pollution for natural reproductive processes.61 Some EJ activists who opened the conversation around endometriosis and environmental contamination in Italy explicitly make natural connections between femininity and motherhood by focusing solely on infertility. It is very common to come across arguments in endometriosis support groups where many define themselves as less of a woman or incomplete. Tropes of endometriosis science come to materialize in historically gendered, classed, racialized, and sexualized construction while silencing the ecological aspects. As Serenella Iovino illustrates in the case of the Seveso disaster, interlaced material-discursive practices contribute to the reproduction of discrimination through the gendered politics of dioxin exposure, public-health discourses and industrial liability.62
While bodily functions became more difficult to carry out autonomously, bedbound hours expanded. I spent some of those never-ending days studying medical sciences debates over endometriosis and environmental contamination. The vast literature shows the ontological uncertainty and messiness surrounding the disease.63 Still today, medical doctors sustain the sexist, classist, and racist assumption that endometriosis affects those who prioritize their career over childbearing, making endometriosis the “career women’s disease.”64 During this journey I met doctors from different medical sciences and traditions. My needs, desires, and requests were not listened to, and the responses were belittling. Following the frustration and trauma resulting from Western medicine’s reductionist and mechanistic approach, I sought alternatives in the holistic approaches of traditional Chinese medicine (TCM) and emotional integration. Both experiences were available only to the upper middle-class strata. The waiting room regulars were few and wealthy, as opposed to the numerous people with whom I shared the experiences of emergency rooms and public health wards. Only ten minutes into the consultation, the emotional integration practitioner concluded that endometriosis was the visceral response of a conflict occurring between what my intellect didn’t want and my body desired: pregnancy. I preferred to never return instead of asking whether dioxin bioaccumulation was to be included in the complex picture we were seeking to explore. At the first appointment the TCM doctor apprehensively asked why I was building up so much anger in me, with a clear excess of liver dominating my energy, and I pondered whether to open the conversation of the systemic injustices in our city. In her critique Kate Seear argues that endometriosis provides a “material and symbolic threat to tradition, nature and the ‘human’ in ways that are highly gendered and thoroughly political.”65 Both practitioners saw me through the lens of a gendered body, thus the femininity I was expected to perform clashed with emotions of anger, and the assumed undesired pregnancy was cursed with an illness.
The invisible characteristic of the illness is considered the reason it takes long to receive an endometriosis diagnosis.66 However, there are structurally violent reasons that have to do with the dominant language reproduced in gendered disability, racist medical practices, and heteronormative assumptions over who is the endometriosis patient. Women, especially working-class women of color, and queer and trans people are disregarded by the medical sciences both in research and in emergency situations. Women often wait longer in hospitals before their pain is recognized, believed, and eventually addressed. Black women receive hysterectomies more often than white women, while trans people are ridiculed when seeking the diagnosis of a “female reproductive illness.” The knowledge and autonomy over our own flesh are constantly dismissed as we embody the practices and subjectivities that do not reproduce dominant and hegemonic discourses.
The experience of being dismissed as a troubled attention-seeking young woman forced me to learn how to prepare for consultations with specialists, which are always expensive and never funded by the public health-care system. I have accumulated enough medical trauma to get physically and emotionally sick before appointments. Several times, the experts in the room affirmed I was supposed to trust their choices: “It is unhealthy to know so much about your condition; you should let us do our job.”
An Ecopolitics of Response-Ability
The disabled person must keep silent, dependent on someone else to decide for and define them. Disability, just like environmental injustice, embodies marginal geographies from where we, in order to survive, must cultivate an ecopolitics of response-ability.
For Haraway, response-ability means the “risk of being for some worlds rather than others and helping to compose those worlds with others.”67 Inspired by her elaboration, this article proposes the ecopolitics of response-ability crafted by the experiences and practices of disabled and chronically ill people in the EJ and transfeminist spaces where we speak for ourselves. This claim resonates with the disability and queer revindications by Alison Kafer and Qwo-Li Driskill, Aurora Levin S. Morales, and Leah Lakshmi Piepzna-Samarasinha to dismantle the ableist imaginaries for radical futures where we don’t even exist.68 The ecopolitics of response-ability occurs in the care work of attending to the harm done at the margins of capitalist accumulation and contamination. But it also occurs in the articulation of stories cultivating transformative and just futures where, as queer feminist and environmental humanities scholar Nina Lykke notes, vulnerable bodies’ care is at the center.69
Disability studies and environmental humanities illustrate how dominant discourses of environmental degradation portray contaminated and sacrificed places and communities as those that do not meet the normative standards of desirability or productivity.70 Similarly, biomedicine frames disability as the undesirable absence of or opposite to health.71 These elaborations build on and expand the dualism logic exposed by Indigenous knowledge, decoloniality, and ecofeminism.72 Beyond dualisms the embodiment of chronic illness is a quotidian experience of exclusion and pain, but it is also filled with learning from each other, advocating, caring for, and being taken care of. There is a saying that everyone in Campania has a relative with cancer. Yet there are no numbers concerning the rates of chronic environmental illnesses such as endometriosis to tell the stories of how a toxic and familiar environment can engender specific disabilities, especially for marginalized communities. In this erasure, my toxic autobiography, in which chronic pain is entangled with a lifetime of exposure and a desire for justice, urges the indispensability of carving languages and practices to reclaim transfeminist, environmental, and disability justice for and from our bodies-territories. The ecopolitics of response-ability are the practices for collective survival that stem from the marginal bodies-territories.
From the situated knowledge of the inflamed body-territory I present some of these practices for collective survival that challenge the toxic discourses of eco-heteronormativity, without dismissing or silently accepting environmental injustices. This is not a lonesome endeavor, as I think and become with a community of transfeminist, environmental, and disability justice scholar-activists who seek to craft existences that, using Murphy’s words, “rise from the ashes of structural violence.”73 Since we always become with each other someplace, and our work is always situated, response-ability in the Land of Fires implies the recognition of the systematic attacks on the reproduction and self-determination of our communities, beyond the individualizing and medicalizing narratives over the health and disease of our bodies and territories.
Barely able to sit up, I often cannot make it to the streets for demonstrations or assemblies. How can we make the disabled’s claims heard, our rebellion visible, together with the voices and bodies of those who cannot take to the streets because their movement is restricted, they care for someone, or they could lose their jobs or be imprisoned? The intersectional work to fight for disability justice within EJ and transfeminism is currently emerging in Italy. During NUDM Naples’s assemblies we discussed the multiple marginalities inscribed onto our bodies and deliberately brought the voices of those who stay at home via videos, pictures, and audio recordings. Thanks to my sisters, my swollen endometriosis belly full of surgical scars was projected during the international day for the elimination of gender-based violence, knotting embodied disability with resistance to environmental violence. A few months later, during the grassroots festival “Care Is the Cure,” organized at the occupied cafeteria of Federico II University, one workshop was dedicated to vulnerabilities and anti-ableism. After a collective reading of “Sick Woman Theory” by Johanna Hedva, autistic, chronically ill, mental-health, tetraplegic activists, and able-bodied allies discussed the intersectional characteristics of oppressions in the biomedical field, the often-unspoken ableism in assemblies, autonomous care practices, and our social and environmental justice desires.74
Supported by these collective reflections, our marginal bodies-territories can create bridges and coalitions. In Taranto, the citizens and workers’ grassroots committee organize an event to counter the national workers’ day festival, which is sponsored by extractivist corporations. The Apulian city hosts the largest steelworks in Europe, which is under multiple investigations for environmental and health devastation. In 2021 I was invited to the event as a scholar-activist speaker from the Land of Fires, after years of mutualism nurtured across our communities. There I knotted my story with the local women’s committee who demand that endometriosis be recognized as an environmental illness. Their claims helped me see through our shared experiences where dioxin, embodiment, porosity, corporate contamination, and pain make us response-able toward each other. With them I explored sexist, racist, classist discourses in endometriosis science and proposed collectively imagining a transfeminist, disability, and environmental justice coalition to tackle the intersection of oppressions. Within a few months local transfeminist and environmental justice activists and anticapitalist farmers started meeting to envision solidarity networks between the city of Naples and rural areas, multispecies justice, and agroecology as care work for bodies and territories.
The ecopolitics of response-ability nurtured through these elaborations are collective endeavors, in which we learn from our knowledges and build connections across experiences. We explore together and engage in processes that help reclaim dignity and overcome narratives of victimhood and disposability for our mountains, seas, companion species, and human communities.75 Since we are not all response-able in the same way, we must expose how ability, gender, sexuality, race, class, and nationality affect our experiences of environmental, biomedical, economic, and epistemic violence. And “think we must” about the emancipatory practices, technologies, and imaginaries we can craft from our bodies-territories. The ongoingness and situatedness of these experiences do not allow for linear, universal, or prescriptive definitions of the ecopolitics of response-ability. On the contrary these help us do the prefigurative and affirmative work that aims to craft counter-hegemonic stories with no bottom lines but multiple and more just openings.
There is a profound need for grassroots social movements to engage with transfeminist, environmental, and disability justice that accounts for the everyday lived realities of chronic illness as a site of intersectional knowledge production on environmental violence. This intersection of perspectives can help move away from an environmentalism that acknowledges disability only as a cautionary tale.76 Mending anti-extractivist futures involves coalitions, in which marginal bodies-territories identify and resist the violence inscribed in normative ideologies of desirable, productive, and natural, and we nourish our indispensability. With this toxic autobiography, I desired to crack the construction of the modern sciences body as a bounded and discrete entity. Chronic illness situates the body back in the troubled and relational political ecology between health and environment, while it powerfully shows that the situated, counter-hegemonic, collective response-ability for our bodies-territories is what keeps us alive.
Acknowledgments
This article was developed within the WEGO-ITN (Well-being, Ecology, Gender and Community-Innovative Training Network) project funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie grant agreement no. 764908. I wish to thank my supervisors Panagiota Kotsila, Giovanna Di Chiro, and Stefania Barca for the support and guidance received during the writing experience. I also would like to thank the blind reviewers and editors of Environmental Humanities for their valuable feedback during the revision process. I am grateful to the professional proofreaders Zuleika Sheik and Tanya Rahman, who ameliorated my writing as a non-native English speaker and writer. Thank you WEGO community for enriching my thinking and to my political communities in Naples and beyond for all the challenges and care in moving, practicing, and thinking together.
Notes
This article does not have the scope to thoroughly explain the last thirty years of the waste emergency and the Land of Fires in Campania. The complexity of events, with their administrative, discursive, economic, journalistic, political, geological, societal, semiotic, sanitary, epistemological, and judicial aspects can be reviewed here: Armiero, “Seeing like a Protester”; Armiero, Teresa e le altre; Armiero and D’Alisa, “Rights of Resistance”; Armiero and De Rosa, “Political Effluvia”; Armiero and Fava, “Of Humans, Sheep, and Dioxin”; Capone, Cuccurullo, and Micillo. Allarme rifiuti tossici; De Rosa, “Reclaiming Territory from Below”; Calabria and D’Ambrosio, Biùtiful Cauntri; Garrone, Gomorra; Iovino, “Bodies of Naples”; Petrillo, Biopolitica di un rifiuto.
In the environmental racism chapter of Dumping in Dixie, Bullard speaks of the US south as a sacrifice zone. The first time I read it, I was struck by the resemblance to the south I inhabit. It is not my intention to tell the story of the Land of Fires through the lens of environmental racism. Nonetheless, this article will show how the inhabitants of Campania have experienced processes of racialization spanning from the time of Italian nation building to the present.
For the reflection on porosity, see Alaimo, Bodily Natures, 90.
For more on toxic embodiment, see Cielemęcka and Åsberg, “Introduction: Toxic Embodiment.”
Armiero et al., “Toxic Bios”; on narrative justice see Barca, Forces of Reproduction, 21.
The pointed-shaped tomatoes are named after their conservation method. The berries are hung up in bunches tied with hemp strings—al piennolo—and stocked in ventilated rooms to last throughout the winter season. Catalanesca is a grape cultivar brought to the territory from Catalunya under the fifteenth-century Aragonese dominion.
Cupa Monti literally translates to Shady Mountain Lane. In southern Italian toponomy, cupa is a lane often tucked in volcanic high ground, which runs along a water stream from the mountain top to the sea. Nowadays the wider hamlets where the water streams used to flow are named after the local cupa.
SIN indicates sites of national interest for remediation, instituted in response to the damaging consequences of industrial, extractivist, and waste management activities on soil, water, and health. The remediation works are supervised by the national Ministry of Environment (known since 2021 as the Ministry of the Ecological Transition). The declassification from SIN to SIR (site of regional interest) has often served institutional immobilism.
Camera dei Deputati della Repubblica Italiana, Relazione territoriale sulla Regione Campania, 248.
The Italian network is part of the global Ni una Menos movement, born out of the convergence of trans-feminist, LGBTQI+ assemblies, collectives, and shelters. The transfeminist plan writing process was the collective result of political inquiries and working groups.
Author’s translation of Non una di Meno, Abbiamo un piano, 38.
Kafer, Feminist, Queer, Crip; Pellow, What Is Critical Environmental Justice?; Piepzna-Samarasinha, Care Work.
Kafer, Feminist Queer Crip, 148.
Senior and Mazza, “Italian ‘Triangle of Death’”; Istituto Superiore di Sanità, SEBIOREC; Istituto Superiore di Sanità, Studio sull’impatto sanitario; Zona et al., “SENTIERI.”
I borrow the notion of “response-ability” from Haraway, Staying with the Trouble.
Anti-meridionale means anti-southern, as Meridione indicates the southern area of Italy. The racialization dispositif used to represent southern Italians dates back to late nineteenth-century social Darwinism and racial theory, which provided scientific underpinnings for the nation-building project. 150 years later, the same discourse provided new grounds for the modernist wasting project. For a postcolonial analysis of racialization and the Italian nation-building project, see Conelli, “Razza, colonialità, nazione.”
See Barca, “Lavoro, corpo, ambiente”; Centemeri, “What Kind of Knowledge,” 138; Callon, Lascoumes, Barthe, Agir dans un monde incertain; Oreskes and Conway, Merchants of Doubt.
The far-from-innocent study subjected twenty-four feral monkeys to dioxin exposure for multiple years. Some of them died from the consequences, others underwent surgeries for endometriosis diagnosis. Rier et al., “Endometriosis in Rhesus Monkeys.”
For an overview on endometriosis and environmental exposure, see Anger and Foster, “Link between Environmental Toxicant Exposure and Endometriosis”; Arisawa, Takeda, and Mikasa, “Background Exposure to PCDDs/PCDFs/PCBs”; Bruner-Tran et al., “Potential Role of Environmental Toxins”; De Felip et al., “Dioxin-like Compounds and Endometriosis”; Guo et al., “Reassessing the Evidence”; Matta et al., “Associations between Exposure to Organochlorine Chemicals and Endometriosis”; Porpora et al., “Increased Levels of Polychlorobiphenyls.”
For an overview of the up-to-date research on the disease etiology see https://centerforendo.com/endometriosis-understanding-a-complex-disease.
I borrow the concept of “theory in the flesh” from Moraga and Anzaldúa, This Bridge Called My Back, 21.
Colectivo Miradas Críticas del Territorio desde el Feminismo, Mapeando el cuerpo-territorio; Plumwood, Feminism and the Mastery of Nature, 47.
