Enduring and the horizon of repair: French Caribbean post‐stroke rehabilitation amid health inequity
PMCID: PMC12979958
PMID: 41406303
Abstract
Abstract Drawing on ethnographic research with patients and therapists in post‐stroke rehabilitation, this article explores how Guadeloupeans strive to exist on their own terms amid postcolonial health inequities, forms of marginalization and institutional disrepair. I argue that French territorial health inequities must be understood in relation to colonial health inequities and reveal the long history of socioracial stratification in the French Caribbean. I then turn to the experience of a patient to examine how she confronts the limitations of her life chances. As she and other Guadeloupean stroke survivors push back against the contours of life delineated by systemic issues, they exist in close engagement with the horizon of life, in a movement I propose to call enduring.
Full Text
An afternoon like many others in the readaptation clinic of the University Hospital of Guadeloupe, I shadowed Julie, a speech therapist and Afro‐descendant Guadeloupean woman in her early forties. I observed her session with Mr. D.,1 an Afro‐descendant man in his fifties who developed aphasia after a stroke. His aphasia meant that he lost the ability to conjure words that he previously knew, for things he still recognized. During the session, Julie and Mr. D. worked together to improve his word recollection. In one instance, she pulled the image of a strawberry out of a picture book and asked him to name the fruit. Mr. D struggled and hesitated for a moment, then looked up mischievously: “This, if I went into a market and asked a seller for this, she would tell me: you're crazy! We don't have this here! You can only find this in France, or maybe at the supermarket!” Out of the tens of images the speech therapist sifted through during the session, many represented plants, animals, or things that did not exist in Guadeloupe—a daffodil, a pine tree, an igloo.
After the session, Julie told me that she tried to select the images and words of as many local objects as possible. Guadeloupean patients who experienced aphasia after a stroke or traumatic brain injury recalled words of objects from their daily lives long before others, and they often remembered them in Creole rather than French. Yet the manual she used in this session and most of her work material came from France. Even though she grew up on the archipelago, she had to leave Guadeloupe to pursue training in hexagonal France. 2 Julie and other speech therapists tried developing an assessment scale in Guadeloupean Creole. Their efforts faltered when they obtained no assistance from the Regional Health Agency3 to scale the test they created.
To briefly situate Guadeloupe: This Caribbean archipelago was developed as a French plantation society through enslavement in the 17th century. Today, the large majority of its 370,000 inhabitants are of West African origins, descendants of those enslaved and brought through the middle passage. After the second and final abolition of slavery in 1848, freed people claimed French citizenship but remained colonial subjects for a century. In 1946, rather than decolonization by way of independence, Guadeloupe followed the course of full political integration with the hopes that this would improve access to French infrastructure and lead to equality. Today, it remains non‐sovereign, despite an important Guadeloupean nationalist movement since the 1970s (Bonilla, 2015; Camal, 2019). In addition to the majority Afro‐descendant population, “zendyens” (descendants of indentured workers brought from India to work on the plantations after the abolition), as well as “blancs créoles” (white European descendants of early colonizers), are understood to be Guadeloupeans. By opposition, those not born on the archipelago are designated as “métros” or “métropolitains” (predominantly white people born in France or Europe) or by their country of origin (with notable xenophobic undertones) when they stem from other Caribbean spaces. These categories and many more remain and are used on a daily basis to interpret social dynamics and ascribe people to distinct worlds (Gordien, 2015; Sainton, 2009).
Over nearly a year and a half, I followed Julie, Mr. D. and many patients, therapists, doctors, nurses, and other health workers in the neurological readaptation clinic of the sole University Hospital Center of Guadeloupe. The clinic was opened by a Guadeloupean doctor who wanted to bring post‐stroke treatment to the Guadeloupean population. When I approached the clinic about doing research on how relationships of care at the hospital were impacted by the presence of history and postcolonial dynamics, I wondered if people in managerial positions may prefer to skirt the topic. Instead, they readily engaged my research question and welcomed me as a full‐time intern. The readaptation clinic was then the main site of access to neurological readaptation4 for Afro‐descendant Guadeloupeans of all socioeconomic backgrounds, as well as for people from nearby islands. In contrast, white patients more likely to have supplemental insurance tended to skirt this clinic.5 I contend that these dynamics are embedded within a larger health infrastructure that still bears the burden of colonialism and slavery's afterlives.
My theorization of enduring is built in conversation with the vocable of endurance developed by anthropologists, Black feminists, critical theorists, and postcolonial scholars. Endurance is a necessity for many people under conditions of structural inequity. Faced with medical disregard, endometriosis sufferers develop “narratives of endurance” before diagnosis (Markovic et al., 2008). In the midst of Australia's late liberal violence, Indigenous people “must find a way of enduring—of capacitating the will to endure” while “striving to change the condition in which this perseverance occurs” (Povinelli, 2011, 112, 103). In a different colonial setting, Ruiz attunes to the “enduring body” in Puerto Rican performance art, to theorize “the always enduring Rican subject” as a political mobilization of Heidegger's “enduring through time,” here a pursuit of liberation in the face of coloniality (Ruiz, 2019, 2, 9, 18). As I'll develop later when I examine the foreclosure of horizon with Ruiz, the friction between structural conditions and longing beyond them is at the heart of endurance. Yet it is essential to refuse the idealization of endurance. Ethnography, Wool and Livingston argue, is particularly apt at attuning to states “in which life goes on and on amid the damage,” while at the same time critically examining the “political romance of human endurance and resilience” (Wool & Livingston, 2017, 7, 8). Wool emphasizes the “stuckness” of this “undesirable present” where people make due amid protracted “uncertainty that seems so relentless it becomes ordinary” (Wool, 2017, 80). Dwaipayan Banerjee, also confronting the “durable consequences of long‐standing precarity,” turns to endurance in India as “an attunement, attachment, and attention to the present” (Banerjee, 2020, 172, 175). Finally, and perhaps closest to my own theorization, Jennifer Nash reflects on endurance as she theorizes “slow loss,” a Black feminist experience marked by “one's slippery and always‐contingent sense of self constituted by being in the midst of something of unknown duration and of unknown outcome,” where the political and intimate are intertwined (Nash, 2022, 9).
Strokes in Guadeloupe happen much earlier and with a higher prevalence than in hexagonal France. In 2007–2009, cardiovascular affections were the leading cause of death in Guadeloupe, while the third cause of death in France (ORSAG, 2012, 2). Within cardio‐vascular affections, cerebrovascular accidents are the leading cause of death in the region (8.7% of deaths according to Girdary et al., 2017, 177). People in Guadeloupe have strokes about 10 years earlier than in continental France. Twice as often, they die of it prematurely (ORSAG, 2018, 6). Guadeloupe is the third French region with the highest stroke mortality rate after French Guiana and Reunion (ORSAG, 2018, 1, 9). Compared to mainland France, strokes in Guadeloupe caused a 74% increased mortality rate in men, and a 45% increase in mortality rate in women in 2018 (ORSAG, 2018, 5).
These population‐level manifestations have deep roots and cannot be reduced to lifestyle choices, as often framed in public health intervention, or as natural manifestations of an imagined biological racial essence. “The slow and premature death produced from the dangerous confluence of misdirected blame and misunderstood causality is especially insidious because of how it is made to be too vast to be treatable.” (Gálvez et al., 2020, 640). Rather, medical anthropologists argue that the racialized treatment of populations—historically and to this day—leads to social and biological downstream effects. As Gravlee states, “race becomes biology” (Gravlee, 2009). Thus, in order to effect change, Leith Mullings argues that “attention to the historical and contemporary processes by which populations are sorted into hierarchical groups with different degrees of access to the resources of society shifts our analysis to racism rather than race” (Mullings, 2005, 80). This reframing leads us to examine the structuration of racial health disparities beyond the immediate question of access to health care or individual behaviors. Rather, Roberts argues, racial inequity causes health disparities, as “it makes people of color sicker in the first place—before they get to a doctor's office or a hospital emergency room” (Roberts, 2012, 333).
Hélène's review of biomedical individual risk factors didn't address Mr. M's interrogation. Had I been a facilitator of the session rather than an observer, I would not have been able to answer it either within the individual biomedical model. The root causes that lead to the higher prevalence of cerebrovascular incidents—socio‐racial stratification—remains arduous to address. Of course, having a better grasp at why Guadeloupeans have a higher stroke prevalence would be far from enough to alter that fact, as critical studies of public health and global health models of intervention have demonstrated (Adams, 2016; Biehl & Petryna, 2013). Yet, the question remains essential.
A doctor engaged in stroke early intervention explained the higher mortality from strokes in Guadeloupe as an “anomaly that needs redress.” At the time of our conversation in 2016, stroke statistics were slowly improving thanks to the implementation of a coordinated pathway for neurovascular emergencies. But a combination of factors still led to increased and premature death and long‐term disability from strokes: In addition to the higher prevalence of individual risk factors such as untreated hypertension and diabetes in the Guadeloupean population, patients who suffered a stroke continued to face delays in pre‐hospital and in‐hospital pathways when any delay in treatment leads stroke sufferers to face a significant loss in opportunity for recovery. Furthermore, once in neurological readaptation, despite the dedication of all categories of health workers to work with patients as often as they could, due to a series of structural shortages in facilities, materials, and personnel, patients in recovery couldn't receive the nationally recommended level of treatment.6
Over 70 years after the full integration of overseas colonies into France, equality with hexagonal France still hasn't been achieved. In 2014, a French National Audit Office report on Health in the Overseas highlighted two paradoxes: First, “despite their geographic, human, and organizational specificities,” overseas departments and territories all have in common “persistent difficulties in health conditions.” Second, while health conditions in the overseas departments and territories are more favorable than in neighboring countries, they are also highly unequal compared to hexagonal France (Cour des Comptes, 2014, 10, 12, 48). The audit diagnosed a series of problems. It observed that France didn't fund health care in proportion to the needs of the population and that while chronic conditions were more prevalent in overseas departments, the state didn't provide adequate support for preventative public health campaigns. It also explained that overseas health care systems did not “sufficiently” respond to the effects of socioeconomic, climatic, and environmental determinants of health. The report depicted a combination of problems in outpatient care: health professional shortages and medical deserts, insufficient coordination between different actors, and high salary costs. Additionally, it highlighted issues in hospital care, such as emergency care overload and deficient management of human resources.
Following this report, the minister of health and the minister for the overseas commended a “national strategy for health in the Overseas,” with strategic plans adapted for the specific concerns of each department. This program, as well as the 2017 “Law for Real Equality in the Overseas,” have been launched to reduce the disparities in life chances between Hexagonal France and its now integrated former colonies. In the Health Regional Project for Guadeloupe for 2018–2028, the Regional Health Agency of Guadeloupe recognizes four challenges, including medical deserts and inequality in accessing healthcare, but also broader disparities in health and premature mortality linked to social determinants of health (ARS, 2018).
Studies of Guadeloupean colonial cemeteries have exposed the “particularly dire life conditions” of enslaved people (Courtaud & Romon, 2004, 66), revealed through bone lesions from advanced tuberculosis, malnutrition, repetitive stresses, and mistreatment (Courtaud, 2013, 13; Dutour et al., 2005). All the while, slave owners wrongly explained infectious disease outbreaks decimating enslaved populations as caused by poisoning practices rather than unsanitary conditions in slave quarters (Bougerol, 1985). Even after the abolition of slavery, the public health of Afro‐Descendant Guadeloupeans was long overlooked. An imbrication of medical training, medical knowledge, and racialized health policies harmed Afro‐descendant Guadeloupeans during the 19th century (Taffin, 1985), revealing the structural construction of racialized understandings of life value and its translation in differentiated life expectancy between racialized groups. For example, the French government covered up a cholera outbreak in 1865–66 to conceal “the miserable living and demographic conditions of the black majority” (Taffin, 1992, cited by Jennings, 2006, 73). Meanwhile, thermal spas were developed for colonizers in Guadeloupe and other French colonies (Jennings, 2006). Up until the early 20th century, Antillean medicine remained focused on an “epidemic regime,” oriented toward emergency intervention rather than prevention and was inaccessible to the majority of Antilleans (Dumont, 2011, 845). The health of Afro‐descendant Guadeloupeans only seemed to become a concern after Antilleans fought for their conscription in World War 1, and while the government of the Third Republic was trying to fortify what it called its “human capital” in the interwar period (Spivak, 1987). Public health development emerged slowly, leading to the opening of the first general hospital of Guadeloupe in 1936 (Dumont, 2009). Finally, the first large hospital structure emerged in Guadeloupe in the late 1970s and gave rise to the University Hospital Center in the 1980s.
In the United States, historian Saidiya Hartman calls “afterlives of slavery” the differential life trajectory of Afro descendant Americans, marked by “skewed life chances, limited access to health and education, premature death, incarceration, and impoverishment” (Hartman, 2007, 6). Racialized populations show disparities in health compared to groups who benefit from health‐promoting environments precisely because health is an indicator of people's broader social and historical living conditions. If the afterlife of slavery present in racist medical practices is more violently visible in the United States, it lives on in people's bodies, as well as health infrastructures and research practices throughout the Black Atlantic (Carter, 2021; Davis, 2019; Valdez, 2022).
While different, racialized health disparities in the United States and France have resonances. If, according to Geronimus's weathering hypothesis, African Americans experienced “earlier deterioration of health (…) comparable to that for Whites who were 10 years older” (Geronimus et al., 2006, 831, 832), in Guadeloupe, people have strokes about 10 years earlier than in hexagonal France. With Christina Sharpe and her reading by Ruha Benjamin, Tracie Canada and Chelsey Carter, I think of weathering as a manifestation of the “total climate” of antiblackness shaped by the atmospherics of slavery (Benjamin, 2022; Canada & Carter, 2024; Sharpe, 2016, 105). I now turn to the experience of one stroke patient to understand how functional and structural limitations became entangled for her, and how these came to bear on her life.
In Freudian terms, a lost object, introjected, can progressively cast its shadow on the ego. If “an object loss” can be “transformed into an ego loss” (Freud, 2001, 249), for Gabrielle, it's as if the loss of the body she knew and desired shook the delineation and grounding of her life, her horizon.
“But what happens when horizons disappear?” asks Petryna (2017, 260). I didn't know yet that she developed the concept of “horizoning” to describe a recalibration of our understanding as environmental thresholds shift, in order to open up space for transformation (Petryna, 2022). I didn't know either that Sandra Ruiz theorized endurance precisely in friction with the horizon, or past it: “Endurance (…) is about laboring to eventually stare past the horizon with apprehension, longing, pain, and pleasure—no feeling invalidated by another in the long pursuit of liberation and continual existence.” (Ruiz, 2019, 12).
Gabrielle pressed against the horizon and persisted in living, but instead of a reckoning—a struggle that would somehow be productive, as in Ruiz's vision—she experienced it as a form of entrapment. Up against the horizon of her life, she didn't find space for recalibration. This is why I describe her persistence through the movement of enduring—an ever‐expending effort caught in a form of stillness—far from the quality of endurance, an ability to see past the horizon, or to recalibrate it. I do not praise a form of heroic resilience in Gabrielle's movement of enduring. And gesturing to Mora Bailey's “Black Feminist Disability Framework,” I invite the readers to guard against their own revival of the “Strong Black Woman” trope, whereby Black women are praised for their resilience while their suffering is erased and their disability disallowed (Bailey, 2019, 21). Rather, I write against the idealization of resilience and underline that Gabrielle grappled with a sense of caughtness in a never‐ending present. By refusing the motorized chair, she demonstrated a desire to persist, even as her world shrunk to a close‐up horizon, marred with shadows.
The foreclosure of Gabrielle's horizon stemmed from an interplay between her refusal of bodily transformation and structural limitations experienced through the presence of stairs and inaccessible public spaces. While most disabled people throughout the world worry about access, the interplay between body and infrastructure has specific stakes in a post‐slavery society like Guadeloupe. The afterlives of slavery play out at the embodied nexus of race, space, and place, as Black geographies demonstrate (Hawthorne & Scott Lewis, 2023; McKittrick & Woods, 2007). At the level of spatial politics, lineage and racialization still play a role in who gets to claim ownership over what land. At the level of embodiment, gender, sexualization, and racialization still carry echoes of enslavement and violence against Black women, reduced to their laboring bodies, turned into territories and “marked as decipherable and knowable” (McKittrick, 2006, 45).
McKittrick argues that this history carries over in contemporary spatial practices, where “Black women's own experiential and material geographies, consequently, indicate a very complex and difficult relationship with space, place, and dispossession” (McKittrick, 2006, 45). Alongside McKittrick, I stress that this charged relationship with space doesn't lead to an inevitable perpetuation of alienation: Black women reclaim their beings and the geographies they occupy through embodied practices.
Gabrielle shows how to sustain emplacement and belonging despite a foreclosed horizon. Hopefully, I have showed alongside her that this remains possible even when embodied practices are less visible and do not lead to reclaiming public space but rather dwelling in the everyday.7 I developed the concept of enduring to show the importance of this desire to persist in living even in the face of duress, and even in practices that wouldn't be readily recognized as reclaiming of space.
“attend to, care for, comfort, and defend, those already dead, those dying, and those living lives consigned to the possibility of always‐imminent death, life lived in the presence of death; to live this imminence and immanence as and in the ‘wake’” (Sharpe, 2016, 38).
“She awaits mercy,” her daughter wrote to me. Perhaps Gabrielle herself was holding a wake to her own life, “consigned to” yet keeping at bay an “always imminent death”. And in that space near but not at death, she remained sustained by her relationships, which I also understand as the wake‐full presence and attention of others, an attention where “We, Black people everywhere and anywhere we are, still produce in, into, and through the wake an insistence on existing.” (Sharpe, 2016, 11)
Rather than a story about strength, resilience, or praise for such qualities in contexts of scarcity, I offer an ethnographic reflection on enduring, a fraught relationship to life in the midst of limitations. The experiences of Gabrielle and other stroke patients in the readaptation clinic bring to light the broad persistence necessary in Guadeloupe, when life is structurally hindered. Far from resilience, this movement of enduring is fraught with hardship and shouldn't be glorified. Yet the efforts it entails should be recognized. I call enduring this way of living “in the presence of death” (Sharpe, 2016, 38), in close intimacy with the horizon of life. Enduring takes place in a confrontation with all‐encompassing conditions of life, the weather that shapes the layered conditions of postcolonial life, from interpersonal dynamics to institutional logics, to structural frames of existence.