Abstract

This article aims to describe changes in the routine of people with disabilities in face of Covid19 pandemic and the ongoing coping measures underway in the state of Alagoas, in northeast Brazil. Data from in-depth interviews with subjects marked by different experiences of visual, hearing, motor and intellectual impairment are analyzed here. Participants are part of an extension project, started in 2019, under the responsibility of the first author of this article. The project changed the routine of the university in face of the presence, circulation and engagement of bodies and minds that escape the conventions of normality in the academic space. The interactions, mediated by a series of applications of digital communication, addressed the following issues: 1) the loss of individual and/or family income resulting from the pandemic, and its impact on their material conditions of existence; 2) the emergence of new demands related to physical and mental health as well as changes in previous therapeutic strategies; 3) the characterization of access to communication technologies, the new possibilities and restrictions for maintaining extra-family bonds, such as contact with friends, participation in social mobilizations and in academic activities. In the analysis, we focused on the mutual dynamics of care, especially the engagement in support and assistance practices from family and friends. The attention to changes in the environment from the different collective demands in face of the pandemic exposes some displacements in the ways of embodying disability as well as the ability to give powerful responses to complex demands for adaptation. The intersection between different social markers of difference, like race, gender and class is also central to the identification of continuities, which involve the pre-existence of physical distance as a reality of disability.


1. Disability, research and positionality

My name is Agaítalo Vasconcelos Júnior. I am a 39 years old white man, with an acquired disability. 1 I survived a corporeal attack, when on October 1st of 2010 I was violently beaten, staying in a coma for three months. During this period of unconsciousness, some people start to ask if I would ever be able to come back to be, even remotely, what I was before. When I woke up, I had a series of alterations on the motricity of my body, especially my fingers that were closed, making the sense of touch difficult in simple tasks, like holding cutlery or brushing my teeth. Also the way I walk and talk was profoundly changed by it. The cause of my disability was an episode of extreme violence related to intolerance that is not uncommon in the state of Alagoas, where I live. 2

In that same year (2010) I, Nádia Meinerz, a white woman, migrated from the state of Rio Grande do Sul to Alagoas to work at the Federal University of Alagoas. On a social occasion, I heard from my colleagues what happened with Agaítalo, as a tragic event with a student who had just completed his bachelor's degree in social sciences. At that time, I was already working with disability studies and was starting a field study at the only school in the state that accepted deaf students, with the assistance of LIBRAS (Brazilian Sign Language) interpreters. However, I did not think of violence as a cause of injuries that produce particular experiences of disability. 3 We met in person in 2017 when I received his application for the newly created Master's program in Social Anthropology. It was the first candidacy for a position for "pessoa com deficiência" 4 in the program, given the affirmative action policies inaugurated by the institution that same year. 5 We had the opportunity to work together only in 2019, when I replaced his advisor (who was on a postdoctoral research leave) in supervising his teaching internship. A result of this work, is the emergence of first movement of disabled people interested in learning about the social studies of disability at UFAL. 6

I, Débora Allebrandt, am a white woman and I also met Agaítalo in 2017, when I was an evaluator in the admissions process for the master's program in Social Anthropology. Although some circumstances of disability touched his research project and others were commented on by my colleagues who had been his undergraduate professors, it was only at the time of his interview that I've came to know his history from his own telling of what came before, how it transcurred and what came after disability at the time of the interview for this article. I was not Agaítalo's professor during the period he was in the program. During this period, I was exercising other roles, as a member of the board of his selection process, and, later, as graduate program coordinator. It was only at the moment of that interview in 2020 that the neurological consequences of the attack and its effects for participation in academic activities raised an implication on my part. Also, it is important to state that as a researcher my subject matter is situated in the field of social studies of science and technology and this inquiry is my first contact with disability studies.

In addition to situating ourselves (Haraway, 1995) in this introduction, we present here the conditions for a dialogue that extended to a broader set of interlocutors. All quotes that make up the article are from people we already knew from certificate activities. 7 Most of our interlocutors have in common their circulation through the university. They are students, former students, servants, professors, family members and friends of these. In other words, most of our interlocutors have their higher education in progress or complete. UFAL is the only federal institution of higher education in the state 8 and that this is not an ordinary experience to the population. 9 In addition, the university campus is located on the fringes of Maceió, far from the beaches - the city's tourist region. On one side, the campus is adjacent to the maximum-security prison. On the other side, there is a highway that prevents one's access to one of the nearby neighborhoods (Santos Dumont), while it is obstructed by the walls of another neighborhood (Graciliano Ramos). This geographic layout of the campus speaks on how the university fits into the landscape of the state capital. Such insular isolation also reflects the difficulty of accessing the university campus, since there are no policies that prioritize public transport for students. There is not even a route in the public transport bus service directly to the university in the city. All buses that pass through the campus follow the circulation route between other neighborhoods. Thus, even short distances are long routes, the vehicles are not air conditioned and are generally overcrowded.

The interviews were dense encounters, made possible by this preexisting relationship of coexistence in the classroom of disabled people who until then were dispersed in the university - a coexistence that produced what Butler (2018) calls bodies in alliance. Initially, we circulated an audio file via WhatsApp, a message exchange application, explaining our intention to produce a report on changes in routine due to the Covid-19 from the perspective of disabled people in Alagoas. The invitation was addressed to thirty people and of these, sixteen fit into our interview schedules, sharing with us some of their life stories and also their daily lives in face of the pandemic.

Table 1 - Interlocutors 10
NameAgeGender ExpressionDisabilityRaceFamily Living ArrangementsOccupation
Aline35FemaleIntellectual BlackLives with mother and brothers No occupancy
Agaítalo39MaleMotorWhiteLives with mother Student
Claudionor46MaleMotorBrownLives with parents; Computer technician
Dolores50FemaleMotorBrownLives with mother;Professor
Edna50FemaleMotorWhiteLives alone;Public Server
Elza28Non-binaryVisualBlackResidence hallStudent
Lucas20MaleMotorBrownLives with mother;Student
Malta33FemaleVisual BlackLives Alone;Student
M. Aparecida66FemaleCaregiverBrownLives with three children;Retired
Maria Julia21FemaleIntellectualWhiteLives with the mother and stepfather;No occupancy
Maurícia29FemaleCaregiverWhiteLives with husband and son;Psychologist
Nelson40MaleVisual BlackLives with the son;Municipal Server and Social Sciences student
Olga24FemaleHearingWhiteLives with her sister and her partnerJournalism Student
Paulo51MaleVisual WhiteLives with wife and stepdaughterSocial Worker
Paulo César42MaleMotorBlackLives with wifePsychologist
Sófocles42MaleVisual BlackLives with wifeRetired
Suely37FemaleVisual BlackLives with mother, stepfather and siblingsPhysical Education Student
Taciana42FemaleCaregiverWhiteLives with her daughter and husband;Public Server
Wagner 41MaleMotorWhiteLives with mother and nephewsFreelancer
Xavier 7MaleIntellectualWhiteLives with mother and stepfather;Does not apply

The synchronous meetings favored an affective approach, deepening mutual interest and allowing a more symmetrical dialogue about the category of disability in its material effects and subjective arrangements for each one of our interlocutors. In addition, giving an interview and contributing to the production of an article based on the experience of disability moved the relationships within the domestic environment. By bringing into homes issues concerning the term disability, we observe the anthropological potential of this category, which, according to Lopes (2019a), lies in the fact that it also questions those subjects that it does not name. In addition, we sustain disability as an embodied action 11 that defines its materiality only through experience, and that destabilizes (although in different ways) all bodies in their prescriptions of functionalities, rationalities, and normalcy.

2. Reports from a damaged land

Damaged land is how we define the place from which we produce reports on the routine changes of disabled people amid the Covid19 during the year 2020. We choose this expression inspired by the term "damaged planet 12" used by Donna Haraway (2016), as it allows us to situate the sanitary emergency as it affects the routine of our interlocutors from the descriptive integration of heterogeneous elements: the emerging environmental disasters that affect the feeding and housing of a large part of the population of Alagoas, the profound inequalities that affect the conditions of care, the socio-technical adjustments operated on the bodies and the social connections they have. Furthermore, we face the challenge of the displacement of anthropocentric objectives traditionally linked to scientific work. 13 Instead of identifying and proposing solutions to problems, we elaborated this report as a way of accepting, from the academic institution, the co-responsibility of living in a damaged environment, as well as a way of answering to the demands for reparation in front of devastating events.

Introducing Alagoas as a damaged land implies reflecting on how the Covid19 pandemic interacts with other emergencies that affect the health of the population in general and of disabled people in particular. Since 2018 Maceió, the main city of Alagoas has been experiencing one of the biggest environmental conflicts in the country 14, involving the mining company Brasken and the residents of five neighborhoods in the city, an area of geological risk due to the action of sodium chloride extraction. The film "Subsidência" by Beatriz Vilela e Marcos José 15 shows the state of these neighborhoods – which are being evacuated due to the risk of new earthquakes. 16 Researchers from that region, such as Freire, Lins and Cavalcanti (2020) argue that analysis of the progress of the Covid-19 pandemic must also consider these other ongoing emergency situations, as they threaten housing conditions, such as compulsory displacement of the population living in the neighborhoods that are "sinking" in Maceió and also due to the risk of rupture of the Águas Belas (PE) dam, which affects around 80 thousand people living on the banks of the Ipanema river. 17

However, the technical prognosis of the possibility of this other compulsory displacement of the population living in the agreste region, as well as the predictions that demonstrate the potential of Coronavirus transmission, do not produce protective responses, nor do they produce actions to reduce the damage caused by the tragedy. As we observed in 2019 with the environmental disaster of the oil spill that affected the entire northeast coast, (but especially Alagoas due to its hydrographic capillarity), the damage to the marine and lagoon ecosystem and to the health of the caiçaras and ribeirinhos people are little known. 18 All this tragedy is silenced in the face of the economic priorities to sustain a touristic image of the "Brazilian Caribbean", which emphasizes the warm and crystalline waters.

As the authors pointed out, such disasters essentially affect those people who already are in a vulnerable position. To understand this effect, we need to see how social inequality structures the living conditions of Alagoas population, which is more clearly expressed in the capital. That's why we bring here two audiovisual references, produced from the very involvement of the inhabitants in these situations. The first is "A Três andares" 19, a film by Bruca Teixeira that mixes documentary and fiction. We can see a frame by frame montage that divides the screen horizontally and contrasts the landscape of the elite and peripheral neighborhoods of Maceió. The second is a documentary "A visão das grotas" 20, by Wéllima Kelly and Wagno Godez, that presents the daily life of "grotas" 21 tangentially transformed by Covid-19. Walking through the stairways, streets and alleys with people who live in these neighborhoods, we have an example of the reality made invisible in the imaginary that constitutes the capital. By inviting the reader to access these materials, we want to highlight other narratives about the city in which our interlocutors' experiences take place. This is not about a stylistic expedient nor ethnographic authority. Instead it is a necessary focus adjustment, an indispensable technique for approaching environments that are disproportionately impacted in crisis situations.

Below, we present reports — made by both disabled people and caregivers — on the changes in daily life. Aspects like loss of income (individual and/or earned by a family as a whole), physical and mental health, specially conditions to sustaining previous therapies. We also pursue access to communication technologies, new possibilities and restrictions for maintaining bonds outside the family, such as hanging out with friends, involvement in social mobilizations and academic activities. Our aim here, following Gavério (2020), focuses on disability as a heuristic expedient to reflect on how, in the face of multiple crises (economic, political, social), some bodies become "more able than others to go through the experience of the epidemic". The author invites us to:

"put into play a certain disabled methodology (Dokumaci, 2018), a certain crippled methodology (McRuer, 2006), in order to critically analyze how ideas such as normal, abnormal, particular, universal, included, excluded, public and private are being enabled within an <epidemiological grammar>, in Latin American contexts. A grammar that also puts into play the idea of normalization, of "rehabilitation", as if the world itself were sick, unabled, disabled and in need of various forms of treatment to "straighten up", to "return to function properly" (Gaverio , 2020: 441)

The parallel that the author draws between the search for answers for the post-pandemic world and the way society deals with disability, looking for resolutions, converges with the critical position we want to take in this article. The following accounts explore the multiple realities of the pandemic that are connected to our interlocutors' experiences of disability.

3. Altered academic routes, mutating bodies under the Coronavirus

On February 25 2020, 22 the first case of Sars-Cov2 was confirmed in Brazil and on March 3, there was news that the virus was in circulation in Alagoas. 23 At the time, a meeting was held between the dean's office and state government, following which we received word that the academic calendar had been suspended at the UFAL. Elza Evangelista, a non-binary, 24 black, 27 years old student, tells us that this resolution entailed the shutting down of both Housing and Restaurant services at the university. Due to that, many students have returned to their hometowns in countryside Alagoas and other states. A significant number of students like Elza remained, however, that had not a place to return to and, in such a circumstance, would be forced to find work to pay for rent. The students then organized themselves as a group, formally demanding the Office of Graduate Studies to reconsider the decision. With the services eventually reestablished, the plaintiff students secured the means to protect themselves from the virus and to study, as the fulfillment of institutional tasks during the current remote attendance regime is not possible without internet access.

To be enrolled in the university at a time like this is described as something of vital importance by João Maurício (Elsa's birth name), as he, a black person, is poor and (due to the loss of his mother a few years ago) unable to access healthcare services. It is our understanding that these formal ties to the university are key to his resuming interrupted processes in his life, among which is getting treatment for his eye disease. Medical assistance, devising strategies to keep himself in the performative arts scene as a drag queen and makeup artist, getting acquainted with assistive technologies during his training as a sociology teacher, her self-perception as a disabled person – all these are instances of that initiative. It was a surprise for us to know that the ongoing changes in this interlocutor's life were not negatively affected by the pandemic. Our impression from that conversation was that the measures she has taken towards living with the virus' existence out there are being built around the shift in what she describes as her sight loss used to be embodied thus far. 25 Her impending blindness has materialized through an ensemble of new demands, efforts to adapt her learning strategies as well as through the reconfiguration of her relationships, which have since then come to incorporate existences and bonds that she had been previously avoiding. Like several of our students at UFAL, Elza never really told the Program's staff and faculty about her struggle. However, in tandem with the emergence of distance learning and her enrollment in online activities pertaining to teaching initiation, she had to not only open up about her own experience, but also to seek out therapy and accessibility alternatives that would enable her to keep meeting the program's expectations.

Another account featuring the positive changes in routine is given by Claudionor. He is a brown man, 46 years old, left with severe motor limitations from birth due to cerebral palsy. Since 2015, as he got his first motorized wheelchair, his mobility conditions have improved enough to allow him to pursue an education. 26 In his work, he provides customers with a wide range of computer services – from computer hardware and cellphone maintenance to programming. The day of the interview is when Claudionor, Nádia and Agaítalo have properly met via video call. In any case, prior to that they had been introduced to each other by Paulo José, a Social Sciences undergrad student and a friend of Claudionor's; he as well participated in the interview, thus facilitating both the anthropologists' listening and the interlocutor's speech. This was a tender moment, lived not without a good deal of expectation on both sides, as we had already heard so much about each other. In a way, it is as if we had each already been made a part of each other's lives through Paulo José's stories – told to Claudionor about the UFAL, and, conversely, to his professors, regarding his friend's genius. It was also a distinctive moment of encouragement, in which Vasconcellos commented on how his speech had vastly improved since the beginning of speech therapy.

Claudionor explained that, to him, the physical distancing measures had the benefit of bringing everyone else to his world. The forced transition to distance learning made it possible for him to meet everyone else in a preparatory class for ENEM (National High School Exam) 27 under similar conditions, maybe even giving him a bit of an edge relative to the others, due to his familiarity with digital tools. As excited as he was then to go back to class on his new chair, he emphasizes that he feels more comfortable and efficient upon interacting with his colleagues and take in the contents remotely. Taking what this interlocutor is telling us seriously will involve reframing our perspective so that we can acknowledge the ableism contained within the very project of education that we currently carry forth, as the latter is modeled on colonialist assumptions (Noel, 2020).

Agaítalo's experience (he who, in March 2020, was about to obtain his Master's degree) must be considered from a different perspective. Below, we present an excerpt of his interview; it displays certain shared elements with claims that we have heard from other interlocutors during the second semester of 2020. At this moment all of us, the three authors of this report, are staring at the screen, talking about a particularly stressful situation, one that affects us directly in all our current positions. A few months prior to this meeting, we have been made aware that the Anthropology department was studying to expel all students that, even after having been given a deadline extension, failed to complete their monographies. 28 When we asked him what tasks he has forfeited tackling during the pandemic, Agaítalo tells how taxing it has been for him to take upon himself to do all the household management, endure the fighting with his mother (who would not abide by the protective measures) as well as to deal with the friction caused by his sister's insistence on keeping visiting them, bringing her children along. According to him, this has made it extremely hard to keep a writing schedule that is anything like what the program expects for a Master's thesis:

The whole pandemic situation has been terrible. I was already at the final stage of my thesis, getting real close to finishing it, really, even though I had no idea then how much I had already done. When the pandemic broke out, I lost it, I lost it completely. Because, since I live with my mom, who is in the risk group, given her age – she is 71 – I thought: God, if I get this wretched disease [I dread the thought to this day], if I get it and pass to my mom, I'll never be able to breathe again. Because, knowing that I would have killed my mom, that I would have killed the person that I love the most and that is the only one to love me back (pause). Just the thought of it would kill me inside. It was then that I needed a therapist, because I was not getting anything done, I couldn't read nor write at all (…) Anyone that would come to visit I would not let into the house, I would sanitize every nook and cranny, I was rude to several people, standing at the doorway, not letting them in out of fear that they could potentially transmit the disease to my mom. I don't know how I managed to keep sane in the end. So, the degree, the thesis, it was all pushed way back in my mind. I swear to you, the thesis wasn't really there, in my thoughts, what I wanted was to preserve my mom's life. (Interview with Agaítalo3, November 12, 2020).

From this excerpt we can notice the impact on his mental health, the felt need to take on the responsibility of caring for another person, the fear of contagion and the despair upon entertaining the possibility of losing his loved ones, the search for help and the need to establish priorities. Likewise, other interlocutors have described the changes in their daily lives by focusing on how they repositioned themselves in the context of family dynamics, especially when faced with the yet untried responsibility of acting as caretakers or even breadwinners to other family members.

Like Agaítalo, Nelson had to take on new charges, specifically the housekeeping chores, which had been previously carried out exclusively by her wife. He is a 40-year-old black man with low vision and about to obtain his second degree. He works in a municipal school in the city of São José da Lage, Alagoas' countryside. The school has been closed since the beginning of the pandemic. Our conversation takes place as drastic changes come to affect his routine: the end of his marriage after nearly 20 years, as well as moving to Maceió with his teenage son. As he sees it, the pandemic did not cause the end of that relationship, but it has accelerated it through recurring arguments and uninterrupted coexistence in the same space.

To focus on studying and graduating during this period of distance learning has been a challenge. In part due to the emotional instability generated by the breakup experience, but also due to the fact that the institutional conditions of accessibility have changed. The Accessibility Board – that aided by making available zoomed-in printings of the semester readings, or even support from a volunteer student that would help him with the texts – was not able to assist him to satisfaction. The new assistive technologies for writing and reading that he has been offered present their own challenges: adaptations that happen to be incompatible with her determination and with putting to good use what is left of her ability to see. Nelson wants to write his own final essay, no matter how many months he will have to spend "rubbing my face over the screen". Doing so gives him bad headaches and back injuries from hunching over the computer. But those pains he is already used to handling – he does not feel humiliated by suffering them; the same cannot be said of the writing and reading adaptation requirements currently imposed on him by the university.

Other two interlocutors report having lost certain things with the suspension of face-to-face activities at the university. This is Lucas' case. He is a brown young man, 20 years old, and a social sciences student. Lucas is also a wheelchair user, student movement activist; he lives with his mother in a poor neighborhood adjacent to the university premises. Despite the geographic proximity, commuting from home to campus at night (when most of his classes take place) has always presented a considerable challenge. To find a bus equipped with a side entrance that has the university in its itinerary, he must make his way through a dirt road, cross two high speed lanes and wait for a long while at the bus stop. By the time he arrives on campus, he must drive his wheelchair through a sloping, long, irregular patch of sidewalks to the Institute for Social Sciences.

For him, to be at the university is valuable as an opportunity to be with other people outside his family, to develop aesthetic and political affinities with people his age; also, as a space to discover and potentially express his sexuality. Even with reasonably reliable internet access provided by student housing as well as at his mother's employer's house (which Lucas regularly frequents) and making the most of the available digital tools, he does not feel motivated enough to study. He tells us that he misses his friends, though still in touch with them the possibilities of interaction are now entirely changed. He points out that he would rather invest his time and energy doing something related to his course that also presents itself as a source of income. Additionally, he mentions that, since the pandemic began, he has been having a hard time getting access to his regular medication, as well as to the follow-up care that he used to attend in another state with the support of his local municipal government.

This is Suely's final semester at her Physical Education course in a private college. She also points out that she misses being physically around people, frequenting her school's facilities. At 37, she is not as comfortable as Lucas while interacting online and she has definitely not acclimated to distance learning. To an extent, her low vision adds on new requirements to the adaptations in the institution. Upon reflecting on the difficulties to keep writing the final essay, she stresses the fact that she is still learning this particular form of academic writing, with its quotations and bibliographic references; she is likewise getting used to the text processing tools, the latter still not adapted to her needs. Facing this scenario of diminished possibilities of interacting in person with university's personnel and colleagues – people that help her with course activities and encourage her to overcome countless obstacles – she feels alone and lost. That does not mean that she had lost contact with them; on the contrary: she has mentioned to us how supportive they have been during this transition to digital learning platforms. However, she lives in a poor and densely populated neighborhood and serving to lodge most of her family members, is a place where their lack of acquaintance with Suely's path towards getting an education sticks out so that studying at home becomes unproductive.

To analyze such a difficulty, one must consider what it is like to be part of a black working-class family, having migrated from Alagoas' countryside. One must learn about her independent search for an education, "knocking door to door" at every neighborhood school out there, until she would find one that would have her. In her narrative, mother and father and siblings do not make an appearance as companions to her journey. At home she had never found an environment that allowed her to study. It is through the bonds of affection that she establishes with professors, staff, colleagues, that finishing her monograph, to experience her own graduation ceremony, have come to be understood as achievements worth celebrating.

All these interlocutors have had their academic routes significantly altered during the Covid-19 pandemic, as have several other students whose trajectories were not hitherto affected by disability. These changes in daily routine also produce a shift in the way disability is embodied in them, that is to say, in the properties that they perform and on the outlines that their bodies materialize. To Elza, it becomes possible to enact eye disease in a context where healthcare services are accessible to her to at least some degree. To inhabit the same environment as other people who have been preparing to occupy a seat at the university is something that has only become a possibility for Claudionor thanks to the emergence of distance learning. Being a disabled person is a scary new journey to Agaítalo, that makes him feel very strong sometimes, but also carries on deep traumas that rehabilitation does not fix. Audiobooks, voice command tools are not assistive technologies when Nelson's priority is to exercise his sight as much as he can. By not walking around the campus and the city on his wheelchair (along with people his own age), not bringing his own body out in the streets to assert himself politically, to share their worries and make friends, Lucas feels like he is disappearing, falling into the invisibility that disability conjures up. To Suely, having a degree, being a blind physical educator as achievements, are not just satisfying if the conditions of pursuing her future are changed that much.

This analysis is conducted as the background of Mol and Low's idea that beings and materialities constitute one another in a mutual relationship (Mol and Low, 1994) — a theoretical result that stems from these authors' studies on science and technology. They characterize materiality as a relational process, asking how the differences between properties of matter can be measured in the first place. In that sense, aspects such as durability and malleability are not intrinsic to certain materials; rather, they are effects of an ongoing interaction with humans and non-humans alike, through a plurality of practices. Drawing on this understanding, we propose a closer look at the realities of disability that are being captured as of late by an opposition between medical understanding versus a social theory of disability. We endorse the criticism addressed by Mol (2008) at the same time to constructivism and perspectivism in defense of the open and contested character of disability, and, especially, the mutual interference between these two ontologies. Therefore, our goal is not, through a critical endeavor, to offer a deeper reading of one or both interpretations, nor is it to seek a new synthesis to this debate. Our objective is rather — through this collaborative effort to preserve bonds — to experience, along with the disabled people and their caregivers, the multiple realities in which the Covid-19 pandemic is lived in Northeastern Brazil.

4. Disability as an expression of Sympoiesis

Haraway begins her point on sympoiesis by explaining that the concept can be very simply defined as "making-with". To understand its application, however, she invites us to dive into the world in which life scientists argue over modes of existence referred to as holobionts, "entire beings" or "safe and sound beings" (Haraway, 2016, p. 60). In presenting a criticism of autogenesis, she leads us through the multiple assemblages and various dynamics of interaction by which holobionts connect to each other, digest, assimilate and transform each other. In microbiological terms, she questions the view of "unities" and "beings" as referring back to notions of self-sufficiency and individuality. Previous works (Meinerz, 2010: 125-126) have explored the key role played by support and assistance networks in both the sexual and parental experiences of disabled people. By returning to a dialogue that we have previously established with this text, co-authored by an intellectually disabled person and a researcher (Strike and McConnell, 2002), we emphasize the challenge posed by the task of "making-with" in contexts as diverse as those of service provision, caretaking towards disabled people and academic writing itself. Being engaged in such an activity requires us to break with the assumed asymmetry between subjects and objects in research, recipients and providers of many kinds of care, assistance and support that are essential to life.

We rely on the notion of sympoiesis to argue that the experience of disability calls out the autogenesis at the core of narratives on humanity and society. Disabled people cannot hide their coupling to various assistive technologies, their need for technical aid, nor their interdependency of other humans. Our claim is that they make explicit the symbiogenesis hidden by able-bodiedness. 29 The accounts presented below also show significant changes in everyday life – changes that will be received with an attitude of effective reorganization and intensification of engagement as people are faced with the multiplication and complexification of pressures. This ability to respond, or "response-ability" (to keep Haraway's own word assemblage) will reveal a delicate weaving, made out of heterogeneous materials and very precise binding. These are stories about engaging in resistance construed as an operation that offers no promises of success, safety or salvation whatsoever.

The first account is Dolores, a white woman, 50 years old; she lives with tetraparesis. She tells us that, despite feeling strong enough, the arms and legs' movement range is reduced. As a professor specialized in child education, she is often seen around campus on her motorized wheelchair. Despite her position attributions quite busy training teachers and technicians, consistently delivering lectures on accessibility and assistive technologies. Born in the state of São Paulo, she moved to Maceió following her being hired as a professor in 2015; her decision to do so, in any case, had to do not only with the new job but also with the fact that a considerable part of her family (the part that did not migrate Southeast decades ago) still resides here. It is worth noting that, her current middle-class status notwithstanding, she comes from a very humble background, having always had to work and study, despite having lived as a disabled person since childhood. During her interview she detailed the causes of her acquired condition and its developments, highlighting several decision-making circumstances in which she prioritized living her life (in the sense of fulfilling her own desires and owning the risks involved in choosing to experience what feels important to her) over medical treatment. Compared to the cancer that she braves with no chemical therapy, Coronavirus is just another variable in her estimation of the circumstances that can decisively affect her.

In the middle of the pandemic, she will need to undergo a jaw-replacement surgery, a procedure that involves inevitable exposure to the virus during interstate transfer to various appointments and stages of treatment with ultra-specialized doctors in São Paulo. One must have in mind that she travels accompanied by her mother (who has, since the breakout, come to need help to comply with physical distancing) as well as her personal assistant. It is over this extended body that the protective measures are being incorporated: avoid crowds, use masks, wash hands and surfaces with sanitizer, keep your distance from relatives that await you back in your hometown. Furthermore, when we spoke, she was preparing to take office as head of the Graduation Program in Education, one of the most important in the university. She is optimistic and unafraid of the management challenges ahead of her in academia, she serenely embraces a whole set of responsibilities that most of her colleagues will be glad to dodge, especially at this time. As someone who is already quite used to living amid the turmoil, she looks ahead and makes plans to take a postdoctoral leave as soon as her term of office is due.

This ability to respond potently to a precarious circumstance and ever-growing pressures is also manifest in other accounts regarding the course of this year. Such is Paulo Cesar's account. He is a 42-year-old black man who recently graduated in Psychology; he is also president of the Hemophiliacs Association of Alagoas. Concurrently with his graduation in early 2020, his marriage was made official, he got his first job, left his parents' house and the neighborhood where he had lived all his life up to that point. According to him, all these things that happened before the pandemic were already planned and carefully organized. As we find from his excitement during our conversation, he has been enjoying this moment of great self-fulfillment, albeit surrounded by this dire new reality. It must be noted that, in addition to the hemophilia, Paulo Cesar became paraplegic following a botched medical procedure that took place as the countless exams that preceded the diagnosis itself.

Since his workplace (a rehabilitation clinic) is located in a neighborhood far away from his parents' house, he chose to rent a place closer to work, so he would not have to depend on the bus. The home that harbors the couple's newly started married life has soon had to make room to Paulo Cesar's physical therapy sessions; now it has as well to double as storage space for his hemophilia medication, as the hospital facilities that used to house these drugs were repurposed due to Covid-19. At work, achieving the goals in order to secure the financing granted by the public healthcare system is a pressing matter, and he is at the frontline of face-to-face appointments. Working as a psychologist, he deals directly with the public within the healthcare system, counting only with the safety measures that he himself can provide. Concern with a potential virus infection gives place to a careful weighing of the risks to himself, to other patients, and the harm done to [his] physical and mental health from the prolonged suspension of the therapies provided by the clinic to disable people.

Another account that goes in the same direction is given by Malta, a black lesbian woman, 32 years old. In 2020, she enrolled in Psychology at the UFAL. She does not go into detail regarding the circumstances that caused her sight loss, understanding that Nádia was already aware of those. The fact that she lives in the same neighborhood as Agaítalo also functions as an incentive that pushes her to explore the everyday limits to accessibility and her own attitude to being excluded from social interactions. The three of us were quite moved by such a display of willingness to learn and adapt towards more efficient forms of tackling the pressing issues in one's life. Infected with the Coronavirus, Malta was admitted to the hospital, where she remained for a whole week; she recovered quickly afterwards, despite having diabetes, a condition that tends to enhance the disease's severity. Alert to everything that takes place in her house since the physical distancing measures took effect, she can pinpoint the exact circumstance that got her infected. Following her discharge from the hospital, and complying to her family's request, she went on to convalesce in an inn, a place run by her mother and stepfather, located on the state's northern coast. The decision to live by herself in the state's capital, being a woman with low vision, is something that greatly distresses her family, as they would prefer that she lived closer to them.

She does not express resentment as she talks about her family's notion of herself as a generally inapt person. What she does express, in turn, is her satisfaction upon resuming contact with her friends at the Cyro Accioly Institute for blind and low vision people; in adapting to distance learning mode in the course she has recently entered; and, above all else, in being home with her pets. Even though being with other people daily at both institutions (UFAL and Cyro Accioly) is just not possible at this point, and though being by herself at home poses certain difficulties to the fulfillment of her academic workload, Malta's sense of accomplishment was clear to us.

Finally, Maurícia prompts us to reflect on the matter of symbiogenesis' visibility in disabled bodies. She is a 32 years old white woman, mother to Xavier – a 7-year-old autistic boy. Like Malta and Paulo Cesar, she is a psychologist. We have talked extensively on the topic of her deteriorating mental health as she lived through the first years after her son's autism diagnosis at the age of 2. She also spoke about the time and energy she invested in learning more about this condition, in gathering the knowledge required for her to engage in dialogue with doctors, psychologists, and pedagogues. Particularly inspiring to Nádia and Débora is this interlocutor's approach to the everyday work of pointing out, to herself and to others, "what is characteristic of autism and what is characteristic of this child." The most salient change in her routine was moving out of the apartment where she lived with her kid, her current partner, three dogs and two cats to a bigger house, a more fitting space to all the requirements of work and caretaking.

It is easy to find Maurícia's work as an influencer on Instagram; there, she focuses on content designed to empower other caretakers to autist people. Her own brand, "Mundo Inclusão" ("Inclusion World"), which appears on her account on that digital platform; under this label, she sells a variety of accessories (t-shirts, backpacks, stickers, etc.) to promote the identification of intellectually disabled people and their caretakers with one another through positive symbols. Her activism is not restricted to her internet presence and business. Maurícia is also active with respect to every institution that she has been in contact with along with her son, fighting for his rights as a disabled person. While Xavier is in his therapy sessions, she spends time at the waiting room, organizing and talking with the other caretakers about themselves, about how/where they can look for self-care. Her focus is currently on establishing a dialogue with Xavier's public school, which has admitted the child for the school year, and yet, it has not fulfilled any of the adaptation requirements to autist students.

These accounts provide us with the groundwork upon which we can describe the different ways through which disability materializes during the Covid-19 pandemic as experienced from this hurt land that is the state of Alagoas. From the fact that we are shedding a light on the altered routes and the circumstances set to facilitate adaptation one should nor infer that we are indifferent to the other, more lingering aspects of this experience. Next, to close this article, we explore accounts of a different sort; these can potentially widen the possibilities of a dialogue on the alterations in our daily routines.

5. Physical distance as a disability reality

In the last section we addressed a question that was introduced by an interlocutor, in return for the invitation to take part in the research. Edna is a white woman that walks with the help of crutches (which she calls Berenice). She is co-worker of Nádia and Débora and childhood friend of Agaítalo's sister. At the age of fifty, she lives alone in an apartment located near a shopping center, close to the Federal University of Alagoas. Already in the first approach she affirms that there were no significant alterations in her routine. While at the same time interested in contributing and critical to our point of departure, she warned about the pitfalls of the perception that the physical distance as a measure of reducing infection rate by the Covid-19 brings a new reality to the people with disabilities. During our conversation, she highlights that even before the pandemic she already had a routine organized based around the routes that separated home and work. She explained that although she has several friends, the gatherings with them are less frequent nowadays because their lives have taken different paths, on account of the fact that her friends were married, have children and other leisure priorities.

Ironically, when she participated in the carnival of 2020, revived her interest in physical contact with other people, outside her family and work surroundings. Having fun was a highly complex maneuver that brought to the surface intentions from which she saw herself withdrawn. This broadening of perspectives needs to be understood in relation to the incorporation of work in the interior of her private environment and of the loss of daily life in the university. In her home, the activities related to work not just increased, but also changed the space to include her office. Assessing the countless adaptations made in her house routine and within her own family relationships, Edna has been developing ways to transform this new relationship with work that is present 7 day a week, and 24 hours a day through her cellphone. This alert made us look more carefully to all those interlocutors who did not identify significant alterations in their routines.

The story of Sófocles has the same tone: a perception that the impact of the pandemic in his life was small, since he already had a more homely life. He is a 46 years old married black man, who receives a pension from the INSS. 30 He explains that at the age of 26 he became blind through a bacterial infection. He told us that it is becoming difficult to get the medical follow-up for cleaning his contact lenses, something that needs to be done every two years. The proceeding was delayed, still without a schedule, but he seems confident that soon he will be called to his local community health care center to take care of this problem. What makes his experience interesting to our argument is that he is one of the few people in his family that did not lose income due to the social distancing policies. According to his accounts, his brothers who are self-employed had a significant reduction in his monthly income, and his wife who works as a primary school teacher, has been laid off from one of the jobs she had, reducing her income in half. The feeling of peacefulness that he gives us, is partly due to the fact that the couple lives a simple life in a lower middle class neighborhood, without children and with expenses that can be guaranteed by his capacity to assume the role of provider.

Paulo, a 40 year old white man, who recently received his degree in Social Services, takes a similar position. Close friend to Sófocles, he also has low vision and lives in the same area of the city, with his second wife and step-daughter (who is the person supporting our digital connection). He is worried about his brother's loss of income and takes a deeper look into the pandemic through a sociological point of view. He considers that this loss of income doesn't threaten the material survival of his relatives. Criticizing the priority given to material gain over the loss of lives and jobs during the pandemic, he points out that some people are evading the restrictive measures because they simply refuse to live with a little less. In relation to the impact in his routine, he explains that the pandemic just intensified his difficulty to go outside, something that already occurred before, among other things because unlike his friend Sófocles, Paulo doesn't use a cane outside the house. Paulo perceives the neighborhood in which he lives as being extremely violent, and with fear of being mugged or followed to his home and being robbed, he walks around without his cane to not show that he is visually impaired. His reasoning helps us think about the relative technical efficiency of the devices that are central to the mobility for people who are blind or visually impaired.

For Maria Aparecida, Aline's adoptive mother and caregiver, the physical distancing had already been experienced as synonymous with isolation even before the pandemic. She is a 66 year old brown woman, mother of five children (3 adopted and two biological), who worked all her life in the countryside of Alagoas in the sugarcane mills administration. She is currently retired, living in Maceió and experiencing in a more intense way the demands of care to her oldest daughter, Aline, a 35 years old black woman, who has autism. It is interesting to highlight that caring for her daughter has always been present in her daily life, though in a different way, since it was shared by her other children, partners and housekeepers while she worked. She says that many of her emotional ties had already been reshaped due to the impossibility of daily conviviality, something that happened after her relocation. Talking to people through WhatsApp messages was already part of her regular routine, especially with the few people she considers true friends.

However, we need to point out that not many of those people are considered "true friends". Cida, as she likes to be called, shows the connection that she has with some of her friends that are like her own family because they effectively accept the presence of her daughter in their lives. These friends know about them and welcome the ways of conviviality that Aline and herself are able to offer to them. Also it is important to highlight that the restrictions of circulation in the public space and the risk related to some practices intensify other kinds of prejudice. In this sense, Cida tells how she and Aline feel in their walk around the neighborhood in the afternoons. They used to take walks every day to exercise and interact with other people, animals and plants in the surroundings. They had to stop that activity because of the risk of Covid19 infection through the droplets of saliva expelled during the physical effort. Also because the excitement of her daughter during this period of expansion is somewhat contradictory with the necessity of austerity of one who takes the adventure of walking in the neighborhood in these times that we live in. The third mother/caregiver that we interviewed also brings physical isolation as the main challenge of this moment. But she is not talking about the same thing as Cida. Taciana is a 42 years old white woman, a federal employee in the judiciary system and mother of Maria Júlia, who is 21 years old. She tells us about her hard time going out, seeing friends and visiting relatives because of the risk of getting infected with the new Coronavirus, something that triggers her process of mental illness. Is unusual that she is living this and not her daughter, someone who suffered many emotional and psychological troubles in previous years, related, according to Taciana's reading, with the final years of high school. It is interesting to think that Maria Júlia's journey through high school was really different in comparison with Aline, Cida's daughter (who used to live in a smaller city and was asked to pull out her daughter from the only school in town). Despite having learning difficulties, Maria Júlia, who suffered cerebral palsy during her birth, was always enrolled in the best schools in the city, even when she faced resistance from some of them. It was just in her last year of high school that she started to frequent Pestalozzi, an institution that offers services of special education and rehabilitation. It was there that she met her boyfriend, who is also a disabled person, and with whom she spends much of her time, either in person on the days her boyfriend is allowed to visit her, or on the cell phone. Profoundly engaged in her own emotional life, Júlia demands much less attention from her mother and spent the whole pandemic year without having any emotional crisis. Briefly, it is necessary to be aware of this different outline that physical isolation can take.

At the same time, we need to point out that the reality of physical distance is not shared with some interlocutors, such as Wagner, for example. As a 41 years old white man, wheelchair user and a militant of the disability cause in Alagoas, walking in a wheelchair was never a limitation for social interaction. Even though he moved back to live with his mother during the pandemic, his narrative challenges us with the naturalness in which he presents various ongoing plans in his personal life. He explains that he is decreasing work demands, he is dating and intends to marry soon, and lists the actions needed to get back to live in his own house, once his mother's financial troubles are solved. In addition, he emphasizes his familiarity with the Coronavirus prophylactic measures. Washing the hands frequently, using alcohol gel, and wearing surgical gloves are already part of his self-care practices, in a much valued experience of independent management of his own disability.

The same can be observed in the account of Olga, a 24 years old white woman, an oralized deaf and hearing aid user. In her narrative, the situations of prejudice experienced at school, the loss of her father and the difficulties in view of the association between hearing difficulties and strabismus are counterbalanced with an important socioeconomic and emotional support from her family. Even considering the limitations of having grown up in a smaller town in the state of Alagoas, the engagement of her mother and siblings allowed her access to corrective surgery, constant medical monitoring of her deafness and experimentation with different assistive technologies. Because of the bond she has with the speech therapist at ADEFAL (Association of the Physically Disabled of Alagoas) she has access to hearing aids and other resources such a reception and transmission device which connects her to teachers, allowing her to hear them even when they are facing other directions, distant or moving around in the classroom.

It is important to highlight Olga's bond with her family, that not only gives her financial support, but also possibilities of insertion in the labor market. During the pandemic, Olga was highly engaged in redirecting her sister's artistic activities, who is a singer and performs in children's parties, in the digital environment. In addition, she explains that the remote learning brought great challenges, especially because some practical activities of her Marketing and Advertising course, in a private college, were kept face-to-face. During the interview, she details the difficulties she overcame in each of the classes she studied, especially in regard to group work, to understanding and participating in classes and meetings through the digital platforms. Interestingly, the only subject she failed in her first semester was the one in which the evaluation was done in person, using masks and keeping physical distance in the classroom. It turns out that the use of masks made it difficult for Olga to capture the sound and read the lips of instructors.

With the intention of bringing together such heterogeneous reports, while maintaining our focus on the materiality of disability, we propose an intersectional analysis inspired by Mara Viveros (2015 and 2018). By focusing on the variability in power relations between individuals who, in "Our America", need to be positioned in terms of race, gender and social class, the author helps us to complexify how disabled people become more or less able to go through that period. We have tried, throughout this article, to make these elements explicit, because we believe that they make the bodily experience of disability specific. In this last section, we present some accounts in which the restrictions imposed by physical distance are presented as a well-known reality, and with which some bodies are better able to disrupt than others.

We conclude this article emphasizing that the way we organized the narratives should not be confused with any intention of classification. The analytical keys from which we have deepened the description of the pandemic different realities are moving pieces, made up from the excerpts and other elements in the biographical accounts. They are also a reflection of other spatio-temporal intervals and other personal experiences that can be thought of and shared. The displacement in the embodiment of disability, the efficiency of becoming-with other human beings, animals and techniques, and the inequalities in the conditions of care that we observed when we intersect race, gender and social class are some of the main results from the interviews and the dialogical process that we intend to follow nurturing as a way of positioning ourselves as a university, sharing the responsibility of inhabiting the same damaged land.

6. Bibliographic References

  • Alebrandt, D; Meinerz, N; Nascimento, P.G. (2020). Desigualdades e políticas da ciência. Casa Verde.
  • AMORIN, S. (2016) 1912: A Quebra de Xangô. Filme documentário. Disponível em: https://www.youtube.com/watch?v=n3Obri5EnxA Acesso: 10 de janeiro de 2021.
  • Butler, J. (2018). Corpos em aliança e a política das ruas: notas para uma teoria performativa de assembleia. Civilização Brasileira.
  • Dias, A. (2020). Pensar a deficiência: algumas notas e, se me permitem um convite. In: Desigualdades e políticas da ciência. Allebrandt, D; Meinerz, N; Nascimento, P.G. (eds.). Casa Verde.
  • Dias, G. T. (2019) Os intelectuais Alagoanos e o Quebra de Xangô de 1912: uma história de silêncios. Maceió: Edufal.
  • Carvalho, M. (2017). "Travesti", "mulher transexual", "homem trans" e "não binário" Interseccionalidades e classe e geração na produção das identidades políticas. Cadernos Pagu 52. https://doi.org/10.1590/1809444920100520011
  • Ferreira, G. N. (2020) Nos bastidores, no palco e no mundo. Uma etnografia sobre as relações de gênero, raça, arte e militância política no grupo Transhow em Maceió. Dissertação (Mestrado em ANTROPOLOGIA SOCIAL) - Universidade Federal de Alagoas.
  • Freire, Lins e Cavalcanti (2020) Novas emergências no território de Alagoas: difusão da pandemia de Covid19, rompimento de barragem e afundamento de bairros. Hygeia - Revista Brasileira de Geografia Médica e da Saúde, p. 436 - 440. https://doi.org/10.14393/Hygeia0054559
  • Gavério, M.A. (2020) De volta para o futuro? A "volta à normalidade" e o mundo "pós-epidemia". Contemporânea, v. 10, n. 1, 435-442.
  • Haraway, D. J. (1995). Saberes localizados: a questão da ciência para o feminismo e o privilégio da perspectiva parcial. Cadernos Pagu, 5, 07–41.
  • Haraway, D. J. (2016). Staying with the trouble. Making kin in the Chthulucene. Duke University Press. https://doi.org/10.2307/j.ctv11cw25q
  • Hooks, B. (2013). Ensinando a Transgredir. Martins Fontes.
  • Kelly, W., & Godez, W. (2020). Visão das Grotas. Mostra Sururu de Cinema Alagoano.
  • Lindoso, D. (2005) A utopia armada: rebeliões de pobres nas matas do Tombo Real. Maceió: EDUFAL.
  • Lopes, P. (2019a). Deficiência como categoria analítica: Trânsitos entre ser, estar e se tornar Disability as an analytical category: negotiations between being and becoming. Anuário Antropológico, I, 67–91. https://doi.org/10.4000/aa.3487
  • Lopes, P. (2019b). Deficiência como categoria do Sul Global: primeiras aproximações com a África do Sul. Revista Estudos Feministas, 27(3), 1–15. https://doi.org/10.1590/1806-9584-2019v27n366923
  • Meinerz, N.. (2010) Corpo e outras (de) limitações sexuais: um estudo antropológico sobre a revista Sexuality and Disability entre 1997 e 2006. Revista Brasileira de Ciências Sociais. vol.25, n.72, pp.117-178.
  • Manica, D. T. (2020). Simpoiese com as CeSaM e práticas etnográicas. In Autor2, Autor1 & P. G. Nascimento (Eds.), Desigualdades e Políticas da Ciência (pp. 25–45). Casa Verde.
  • Mol, A. (2003). The Body Multiple: Ontology in Medical Practice. Duke University Press Books. https://doi.org/10.2307/j.ctv1220nc1
  • Mol, A., & Law, J. (1994). Notas sobre el materialismo. Política y Sociedad, 15, 47–57.
  • Mol, A. (2008) Políticas Ontológicas. Algumas ideias e várias perguntas. In: Nunes, João Arriscado e Roque, Ricardo (org.) Objectos impuros. Experiências em estudos sociais da ciência. Porto: Edições Afrontamento.
  • Mello, A. G. (2016) Deficiência, incapacidade e vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC. Ciência & Saúde Coletiva, v. 21, n. 10, 3265-3276. https://doi.org/10.1590/1413-812320152110.07792016
  • Mesquita, A. P. (2016) Violência contra a mulher em Alagoas: perfil do agressor. In: Cecília M. B. Sardenberg e Márcia S. Tavares (Org.). (Org.). Violência de Gênero contra as mulheres. 1ed.Salvador: UFBA.
  • Mesquita, A P et al. (2020) Violência contra a mulher: aspectos sócio-históricos, culturais e o perfil das vítimas em Alagoas. In: 16o Congresso Brasileiro de Assistentes Sociais, 2020, Brasília-DF. 16 Congresso Brasileiro de Assistentes Sociais. Brasília-DF: CFESS/ABEPSS.
  • Nunes, P. A. (2018). Como se computa a violência homofóbica no Brasil? dados, reconhecimento e visibilidade do movimento LGBT em Maceió-AL. Dissertação (Mestrado em SOCIOLOGIA) - Universidade Federal de Alagoas.
  • Noel, M. M.P; 2020. Educación Inclusiva desde la perspectiva decolonial. Analles del Seminario Nacional de Educacion Inclusiva de Chile.
  • Rafael, U. N. (2012) Xangô Rezado Baixo: Religião e política na Primeira República. Maceió: Edufal.
  • Strike, Robert & McConnel, David. (2002), "Look at me, listen to me, I have something important to say". Sexuality and Disability, 20 (1): 53-63. https://doi.org/10.1023/A:1015234404530
  • Vilela, B., & José, M. (2020). Subsidência. 11a Mostra Sururu de Cinema Alagoano. https://mostrasururu.com.br/mostraoficial2020/subsidencia/
  • Viveros, M.V. (2015) L'interseccionalité au prisme du feminism latinoamericain. Raisons Politiques, vol 2, n°58, pp.39-54. https://doi.org/10.3917/rai.058.0039
  • ___________. (2020) As cores da masculinidade. Experiências Interseccionais e práticas de poder na Nossa América. Rio de Janeiro: Papéis Selvagens.
  • Silva. C. J. F. da.(2020) 'A luta por terra não traz diárias, somente perseguição': processo demarcatório e retomadas Xukuru-Kariri em Palmeira dos Índios - AL. Dissertação (Mestrado em ANTROPOLOGIA SOCIAL) - Universidade Federal de Alagoas.
  • Silva, W. F. da. (2020). Da grota à aldeia mãe jovina: mobilidade, território e construção identitária étnica entre os Xukuru-Kariri em Taquarana (AL). Revista Mundaú, 8, 60–92.
  • Teixeira, B. (2020). A três andares. https://mostrasururu.com.br/mostraoficial2020/a-tres-andares/
  • Tsing, A. L (2015) The mushroom at the end of the world: on the possibility of life in capitalist ruins. Princeton and Oxford: Princeton University Press. https://doi.org/10.1515/9781400873548

Endnotes

  1. I am an author and participant in the research that gives origin to this paper. My contributions as a participant are identified by name, as well as the participation of other people with disabilities and caregivers. This position is related to an ethical and political commitment, which is to give visibility to each report that builds this ethnography. The consent was agreed with each participant after the presentation of the final version of the manuscript and their assent in relation to the form and content of all published information. This type of consent is provided in CEP/Conep 510 Resolution of 2016, that complements in concern to social and human science research the CEP/Conep 466 Resolution of 2012.
    Return to Text
  2. Examples of violence as a cause of bodily/sensory limitations take part in the conversations with two other participants (a total of 3 out of 16). Wagner who was paralyzed after being shot during a robbery and Malta who lost his sight after an episode of sexual and moral harassment. The analysis of these unique experiences imposes greater contextualization of the state of Alagoas from the records of violence related to religious intolerance (Amorin, 2016; Rafael, 2012; Dias, 2019) to homophobia (Nunes, 2018; Ferreira, 2020), to structural racism (Lindoso, 2005; Santana, 2017) to violence against women (Mesquita, 2016; Mesquita et al, 2020), and to agrarian conflicts, resulting from demands for the regularization of indigenous and quilombola territories (Silva, 2020; Silva, WF, 2020) which is beyond the scope of this article.
    Return to Text
  3. In his work on disability as a key category to reflect on some questions concerning the global south, Pedro Lopes explores this experience from the emergence of the Disability Rights Movement in South Africa (Lopes, 2019b)
    Return to Text
  4. We maintain the wording in Portuguese of the term "person with disability" to highlight that this is the term agreed upon in the Statute of Persons with Disabilities promulgated in Brazil in 2015. This emphasis is justified by the difference in the meaning and use made of "deficiência" in the Portuguese language that should not be taken as a correspondent for the word disability. We use the word disability and its derivatives throughout the article to facilitate communication.
    Return to Text
  5. The quota policy for disabled people in the graduate programs began in 2017, while at the undergraduate level the process was approved and goes into effect in 2021.
    Return to Text
  6. Disability Policies was an elective course organized from the concept of "teaching community" (bell hooks, 2013) in conjunction with works that focused on rights, the experiences of subjects, their recognition as disabled people, impasses related to the promotion of accessibility in environments with multiple disabilities, emotional demands. The course was open not only to undergraduate students, but especially to disabled people from the community and activists. .
    Return to Text
  7. The certificate activity in which the authors and interlocutors of this article are engaged is called "É preciso falar em capacitismo na UFAL" (It is necessary to talk about ableism at UFAL) and it has been active since 2019. It aims to design spaces for bodily heterogeneous interactions through practices that favor the expansion of the presence of disabled people in the university routine.Like all other certificate activities carried out at the university, it does not have any type of scholarship or financing. This is a result of the Seminar on Inequalities and Politics of Science, which took place in Maceió in 2018, and especially of Pamela Block's encouragement sharing her experience on the demands of students with disabilities at her institution.The seminar was funded by the Foundation for Research Support of Alagoas through the Assistance to the Organization of Scientific Meetings notice nº 01/2018 resulting in the book( Allebrandt et al., 2020).
    Return to Text
  8. UFAL is a public university created in 1961 and is structured in three campuses: AC Simões, located in Maceió (with 53 undergraduate courses) and two others, more recently seated in the countryside: the Arapiraca campus (installed in 2006, with 19 undergraduate courses) and the Sertão Campus (installed in 2010, with 8 undergraduate courses).
    Return to Text
  9. Data from Alagoas obtained from the Atlas of Human Development in Brazil place the state below the national average in many indicators. While life expectancy at birth in 2010 in Brazil is 73.94 years, in Alagoas is 70.32 years. The national infant mortality rate, according to the 2010 census, is 16.70%, while in Alagoas it is 28.40%. This same variable, according to data from the National Household Sample Survey (PNAD 2017) is 12.81% for Brazil and 18.34% for Alagoas. The Municipal Human Development Index (IDHM) of 2010 is 0.727 for Brazil and 0.631 for the state of Alagoas. The per capita income, according to PNAD 2017, was R$834.31 in Brazil and R$426.14 in Alagoas. PNAD 2017 also indicates an illiteracy rate of 7.10% in Brazil, among people over 15 years while in Alagoas this number is 18.19%. Of those, 14.25% (4.29% in BR) among whites and 19.43% (9.41% in BR) among black people. In 2017, the homicide mortality rates registered in Brazil by the Information Department of Brazil's Unified National Health System (DATASUS) were 31.38%, while in Alagoas the data indicated it was 53.82%. By disaggregating these data by race, we can see that in Brazil 6.98% of homicides had white people as victims. In Alagoas, there were 0.71% of white people killed by homicide. Disaggregated homicide mortality rate data for black people in 2017 was 19.97% in Brazil and 49.03% in Alagoas. For more information, see: http://www.atlasbrasil.org.br/
    Return to Text
  10. Table 1 presents data from 19 people whose experiences were addressed in the interviews. Of these, two people with intellectual disabilities (Aline and Xavier) did not participate directly as interlocutors, only the conversation with their mothers/caregivers being considered. Maria Júlia, who also has an intellectual disability, participated in the interview with her mother. Besides, it is important to highlight that although half of the interlocutors are originally from the countryside, only two (Nelson and Claudionor) are currently living outside Macéio.Information that contextualizes participants in terms of social class will be better detailed throughout the text.
    Return to Text
  11. The embodied action or the way a disability is enabled is a definition elaborated from the ontological reading of the body proposed by Mol (2002).
    Return to Text
  12. Haraway was inspired by a proficuous dialogue with Anne Tsing (2015). Tsing's argument on the "arts of living in a damaged planet" is based on the science and technology studies(STS) approach to the anthropocene, in which the idea of damaged landscapes and the meaning of living, growing and negotiating life in such places can help us to understand how the industrial promise and its ruin are within capitalism.
    Return to Text
  13. By proposing sympoiesis with CeSam (Menstrual Blood Cells), Manica (2020) reminds us that we need to understand the network of assemblages that make up the "facts". Here, we take more than social indicators to illustrate the experiences of pandemic inequality and dystopia, relying on narratives of plural experiences to explore the material plasticity and transformation of our experiences of Covid-19's pandemic in this damaged land. This is what prevents us from occupying comfortable places (Haraway, 2016).
    Return to Text
  14. http://mapadeconflitos.ensp.fiocruz.br/conflito/conflito-de-extrema-complexidade-entre-populacao-de-maceio-e-mina-de-sal-gema-da-braskem-envolve-danos-irreparaveis/
    Return to Text
  15. https://mostrasururu.com.br/mostraoficial2020/subsidencia
    Return to Text
  16. Between 2018 and 2019 Maceió was highlighted in the national media due to these earthquakes. . After geological investigation, it was concluded that the exploration of Sal-Gema (evaporite formed by the precipitation of sodium chloride salts with the formation of the mineral halite) by the Brasken mining company was the cause of the sinking of the soil. As a result, more than 7,000 families were displaced and some neighborhoods in the capital were turned into ghost towns.
    Return to Text
  17. Freire, Bonfin and Nazeton (2014) had already brought attention to the relationship between health and socio-environmental vulnerability from the analysis of the floods that occurred in the state of Alagoas in 2010.
    Return to Text
  18. https://www.brasildefato.com.br/2020/08/30/um-ano-apos-vazamento-de-oleo-no-nordeste-nenhum-responsavel-foi-identificado
    Return to Text
  19. https://mostrasururu.com.br/mostraoficial2020/a-tres-andares/
    Return to Text
  20. https://mostrasururu.com.br/mostraoficial2020/visao-das-grotas/
    Return to Text
  21. Grota is a popular term used in Maceió and refers to the favelas located in geographic formations typical of the city's geomorphology
    Return to Text
  22. https://www1.folha.uol.com.br/equilibrioesaude/2020/02/brasil-confirma-primeiro-caso-do-novo-coronavirus.shtml
    Return to Text
  23. https://g1.globo.com/al/alagoas/noticia/2020/03/08/homem-que-veio-da-italia-e-o-primeiro-caso-confirmado-de-coronavirus-em-alagoas-diz-secretaria.ghtml
    Return to Text
  24. "Não-binário" is a term that is being increasingly employed in Portuguese (in particular by digital activists) to refuse gender classification and affirm an acceptance of names, clothes, accessories and performances both masculine and feminine (Carvalho, 2016). We have chosen to preserve the fluidity in gender ascription with respect to this account.
    Return to Text
  25. Even as the availability of appointment scheduling dwindles and bureaucratic hindrances to accessing the public healthcare system increase during the pandemic (the University Hospital, after all, does make room to accommodate and treat Covid-19 patients), resuming medical treatment has become a priority to this interlocutor.
    Return to Text
  26. Claudionor comes from a family of humble farmers, whose home is a small town upstate. His parents tile the earth and, as caring as they have always been towards their son, they have not been able to give him access to an education. He learned to read on his own and, even before the internet's diffusion, he already used this resource autonomously to claim his rights. He tells us that, having no money to pay for a lawyer on a case related to obtaining his disability insurance, he studied the law himself and wrote letters to the President's office (in the years of Itamar Franco and Fernando Henrique Cardoso's administrations), demanding his rights.
    Return to Text
  27. ENEM was created in 1998 with the aim of evaluating student performance at the end of basic education, seeking to contribute to improving the quality of this level of schooling. As of 2009, it has also been used as a selection mechanism for admission in higher education.
    Return to Text
  28. To a young, peripheric program as is the Master in Anthropology at the UFAL (a program that is heavily underfinanced in comparison to the centers of academic excellence), one of the few productivity indicators that can be met is a stable average of 24 months for a student to conclude the course.
    Return to Text
  29. The concept of able-bodieness is widely discuss in Brazil by Anahi Guedes de Mello (2016) and Adriana Dias (2020) who are both anthropologist and disability activists. Anahi get that concept from Robert McRuer and adapt it on Portuguese as "corponormatividade" or bodynormativity. Adriana Dias uses the term "ideologia morfonormalista" or morphonormalist ideology to highlight direct and indirect ways of devaluing the lives of disabled people, through dehumanizing attitudes and lack of access to treatments that would save their lives.
    Return to Text
  30. Translator note - INSS is part of the Brazilian public social security system.
    Return to Text
Return to Top of Page


Copyright (c) 2021 Nádia Meinerz, Débora Allebrandt, Agaítalo Vasconcelos Júnior

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact libkbhelp@lists.osu.edu.

ISSN: 2159-8371 (Online); 1041-5718 (Print)