Precariedade e desigualdades em um cotidiano incerto: vida e esperança em tempos de pandemia de Covid-19

Precariousness and inequalities amidst daily uncertainty: life and hope during the Covid-19 Pandemic

Resumo

Esse artigo trata de dois temas que se imbricam em um contexto de pandemia de Covid-19. Por um lado, me proponho a pensar como a produção da precariedade e a sobreposição de desigualdades se inscrevem na vida cotidiana Por outro lado, realizo uma reflexão sobre as narrativas de esperança como forma de sustentação da vida no presente. As relações entre precariedade e esperança são traçadas, de um ponto de vista etnográfico, a partir das formas pelas quais a vida é elaborada pelos atores sociais em reflexões críticas sobre o cotidiano. A análise da articulação entre a extraordinariedade da pandemia e o curso ordinário da vida é feita por meio de uma visão integrada a respeito das inúmeras desigualdades sociais. A esperança é entendida como forma de manejar a incerteza em um cotidiano marcado pela produção contínua da precariedade.

Palavras-chave:
Desigualdades; Esperança; Incerteza; Pandemia; Precariedade; Vida

Abstract

This article examines two themes that intersect in the context of the Covid-19 pandemic. I consider how the production of precariousness and the overlapping inequalities are inscribed in everyday life and I reflect on narratives of hope as a way to sustain life in the present. Relationships between precariousness and hope are traced, from an ethnographic point of view, from the ways in which life is portrayed by social actors in critical reflections on everyday life. The analysis of the articulation between the extraordinariness of the pandemic and the ordinary course of life is conducted through an integrated view of innumerable social inequalities. Hope is understood as a way to manage uncertainty in a daily life marked by the continuous production of precariousness.

Key words:
Inequalities; Hope; Uncertainty; Pandemic; Precariousness; Life;

Introduction

“Life was a mixture of time from before-now-after-and-even later. Life was a mixture of everyone and everything. Those who passed, those who were and those who came to be” (Evaristo, 2014: 131).

“There are certainly reasons to be pessimistic, however, it is much more important to open ones eye at night, to move tirelessly, to look for fireflies once again” (Didi-Huberman 2011: 49).

This text addresses two themes that are related in the context of the Covid-19 pandemic. On one hand, I propose to consider how the production of precariousness and the overlapping of inequalities are inscribed in daily life (inequities that involve work/income, health, infrastructure, food security, and gender). On the other hand, I reflect on the continuous production of hope (for a possible future life) as a strategy to sustain life in the present. Narratives and materialities intersect to the degree to which the dimension of the imaginary (imagined life) is understood to constitute efforts that make life possible in the present. If the context of the Covid-19 pandemic reveals Brazil’s historically sedimented social inequalities, the forms of hoping for a better future also take on a new shape because of the moment of crisis. This reflection is constructed from an ethnographic perspective and not in abstract terms, and is based on the daily life of Arlinda, who has been a research interlocutor for two and a half years.

It is not new to say that the Covid-19 pandemic aggravated social inequalities throughout the world. In Brazil, the interaction between “the extraordinary consequences of Covid” and the “old and structural inequalities” make even more evident the “fractured democracy” that marks the history of the country (Pimenta, 2020: 1). By framing daily life, the pandemic event causes to emerge with greater intensity both the precarious dimension of life - marked by risky working conditions, negligence and state violence, and food insecurity - and permanent efforts taken by people to manage uncertainty, which even if it is constitutive of daily life (Das and Han, 2016), is aggravated and unequally distributed in circumstances of crisis. The articulation between the health crisis and social factors led many researchers to think of Covid-19 as a “sindemia”. The term “sindemia” was originally created by Merrill Singer to think of relations between HIV/AIDS, the use of injectable drugs and violence in the United States in the 1980s and 1990s (Bambra et al., 2020: 2). The objective of the concept is to call attention to the fact that risks related to health issues are exarcerbated in unfavored communities, perpetuating the noxious social factors.

Some populations are especially affected by the unequal distribution of risk. In the case of women, the pandemic had special impact on networks of affection, work and care in which they are involved (Pimenta et al., 2020). Historically responsible for most of the tasks of care for the home, the environment and people, and inserted in the most precarious work positions, women feel overburdened and more exposed to the virus during the pandemic. This is aggravated when they are the head of the family. In the case of those known as “informal workers” the consequences of the pandemic are substantial, as demonstrated by authors concerned with the relations between policies to restrict mobility and the socioeconomic impacts on this group (Al Dahdah et al., 2020; Guérin et al., 2020). Informal workers are one of the social groups hardest hit by the Covid-19 pandemic, precisely because their forms of earning a living are directly related to modes of circulation and different ways of using the streets. They also have a high risk of contamination, due to their working conditions and the absence of guaranteed rights. According to data from the Brazilian Institute of Geography and Statistics (IBGE, 2020), 41% of Brazilian workers are informal. At the beginning of the pandemic coronavirus, the International Labor Organization (ILO) warned that informal Brazilian workers would be strongly impacted by the restrictive measures that were implemented in Brazil and throughout the world.

In this text I examine Arlinda’s daily life, she is the head of her family, and earns her living selling various goods on the street, and lives in a condomínio popular (Conceição, 2016) [a condominium for low-income residents] built under the federal government’s Minha Casa Minha Vida program [My Home My Life] in the Zona Oeste [western zone] of Rio de Janeiro. For two years I have been accompanying her ways of maintaining her home and earning a living (Araújo Silva, 2017) and in recent months, I noted some changes and continuities that affected her daily life during the pandemic. In addition to helping me to reflect on how the production of precariousness and the overlapping of inequalities is inscribed in the life of informal women workers, Arlinda’s daily life also allows exploring the narratives of hope that can allow life to continue its course at a time of crisis. In recent years, many authors have been considering hope as an object of anthropological reflection (Crapanzano, 2005, 2006; Han and Antrosio, 2020; Lempert, 2018; Lear, 2006; Miyazaki, 2004; Visacovsky, 2019). Hope, although it looks towards the future, guides and forges the practices of social actors in the present. What is the role of the future in the present? This question is raised by Bryant and Knight in the book The Anthropology of the Future, in which they affirm that “the limit of knowledge defined by the future shapes perception of the familiarity of everyday life” (2019: 19).

Examining forms of hope and projections for the future can help understand how people maintain their lives in the present. According to Appadurai (2013: 5), to investigate how people engage with the temporal layers that constitute life, especially the future, can reveal something about their concepts of well-being and a “good life”. The ideas about “good life” that inhabit Arlinda’s imaginary and practices, guide her perceptions, actions, and characterizations about the present. Since I first met her, I felt the need to think of the issue of hope, due to the recurrence of this category in our conversations. I noted, however, during the study I conducted in the first year of the pandemic, that this type of narrative multiplied in such a way that it became inevitable to conduct a more detailed reflection about the issue. According to Lear (2006), it is amid radical uncertainty that arises what he calls “radical hope”, that which allows survival when there is no indication of a possibility for a happy future. To articulate inequalities and precariousness to the theme of the narratives of hope is an ethical-political choice, which understands that suffering is only one of the dimensions that shapes the life of the urban poor¹. Alongside it is hope for a better life, among many other dimensions.

To complete this introduction, it should be emphasized that I registered Arlinda’s daily life during the pandemic from March 2020 until March 2021. Between September 2020 and February 2021, the registration was mostly done with questionnaires². The questionnaire, the main research tool, is divided into five modules: family demographics, labor/income, health conditions, social contacts, and information about Covid-19. The questionnaire was issued by telephone every 15 days, and a total of 10 questionnaires were responded to. They included questions about the movement of people between homes; daily spending and expenses at home; other financial activities such as loans and donations; the forms of help; relations between neighbors, friends and relatives; the health conditions of family members; questions about access to public health facilities and materials; as well as questions about the social interactions and conditions of adhesion or not to the quarantine, and access to information about Covid-19. The same questionnaire was issued for one year, to learn in a longitudinal manner about the changes and continuities in daily life under the circumstances of the pandemic. The duration of the questions and responses varied from one to two hours, given that the questions were quite open, so that they could stimulate a dense conversation with the interlocutors. During the period that the questionnaires were not used, registrations were made in a field diary based on informal conversations on WhatsApp that I had with Arlinda since we met and became friends. The articulation between the application of the questionnaires and the WhatsApp conversations, which were made possible by the intimacy and trust constructed with Arlinda in the previous field research in person, was essential to the investigation, to the degree that the complementarity of the narratives produced in the distinct circumstances of interlocution made the data more plural.

This article is organized around the ways that Arlinda elaboretes life in its narratives and practices. In the first section I discuss Arlinda’s relation with the state through her search for the so-called “social benefits” (and their absences). In the second section I reflect on help from family and neighborhood networks that allowed life to continue. In the third, I consider the theme of health to discuss her chronic corporal conditions and her criticism of the precarious access to public healthcare. Finally, before the final considerations, I discuss the polysemes of hope and their role in supporting life in the present. The passages and expressions shaped by her own categories are in italics.

“Living without benefits”

When I met Arlinda in December 2018 her main source of income was from street sales of candies, sweets, cookies, drinks, and other small goods (cigarettes, lighters, matches, scissors). Five years ago she mounted a stand, composed of two tables and two beach umbrellas, on the main street of the condominium where she lives, and serves the neighborhood each day. At times, Arlinda also sells empadões and empadinhas [hot, savory pastries] that she makes at home, she resells pyjamas for women to earn a commission, and takes advantage of large events, like carnival, to sell drinks on the beach. During the year of 2019, I accompanied her street sales for many afternoons³. She usually began close to lunchtime to catch the children going to school and those who are returning, and she finishes close to 8pm to get the people who only go into the street when the sun goes down.

In March 2020, with the beginning of the Covid-19 pandemic and social isolation in Brazil, Arlinda stopped going out to sell in the street because she was in so-called risk groups. She has high blood pressure, a heart murmur and asthmatic bronchitis, and since March was quite afraid to go out of her house. When she does go out, she takes careful precautions, such as the use of more than one mask when conducting essential activities, the use of alcohol gel even at home and she prohibited her two adolescent boys who live with her to leave the house. In addition to the fear of becoming infected and the precautions, the fact that she did not have money to buy goods to sell was also a decisive factor in her staying home. In May 2020 she asked for my help to organize an “online collection” (vaquinha online) to raise money, buy goods and return to work. I agreed to help, but only R$200,00 was raised, which was not enough for her purposes. At this time, the electrical, gas and condominium maintenance bills had not been paid for two months.

That is when she began to receive the emergency assistance (an income-transfer program created by the federal government to ameliorate the impacts of social isolation on the incomes of poor families). Although she received assistance payments of R$1.200,00, because she lived in a single-parent household and was a mother and head of the family, the money was not enough to go back to street sales. The priority is food, and the prices in the market are exorbitant, they are taking advantage of other people’s needs. After paying the bills, I only buy goods if I can. The constant presence of her sons at home, due to the suspension of in-school classes, increased food costs, because staying at home, the mouth is always chewing, and impacted the load of domestic work. The work at home increased, because the bathroom gets dirtier, dirty dishes, not a lot of clothes, but the house gets dirty, because they [the sons] make a mess. Although she complained of the food package offered sporadically by the public school where her boys study, in October she mentioned the absence of this help. This government doesn’t solve anything and doesn’t help anyone. They can’t decide whether to open the school or not, and nothing happens⁴.

Indignation towards the government usually permeates many of Arlinda’s statements. This became more evident in August, when her emergency assistance payment was “blocked”. In August, the federal government stopped emergency assistance payments to some 922 thousand Brazilians registered in the Bolsa Família [Family Grant] program (an income-transfer program from long before the pandemic) to “guarantee better application of public funds and reach the citizens who meet the eligibility criteria" (UOL, 2020)⁵. Although she is registered in the Family Grant program, Arlinda has not received the “benefit” since 2017, when her older daughter, who at the time lived in the same residence, began to work as an intern in the human resources department of a communications company. It was with her payment that she paid for business school. The rise in family income meant that the domestic unit no longer met the criteria required by the program to receive the “benefit”. So you can’t even study, you have to be below a begger to receive it. She paid with great effort, worked and paid for college, then they cut my family grant in the same month.

Without understanding the reasons for the blockage of the emergency assistance, Arlinda faced enormous lines at one of the branches of the Caixa Econômica Federal (CEF)⁶ in her neighborhood to receive explanations and guidance. The bank employee told her that the continuity of her assistance was in analysis and that she should wait. The next month, through the phone app from Caixa Tem⁷ she got news that her assistance was blocked, due to “non-compliance with eligibility requirements”. Indignant upon reading that “she did not meet the requirements” Arlinda returned to the CEF bank agency in a new attempt to understand what was happening. This time the employee told her to go to the Social Assistance Reference Center (CRAS) to see if there was a mistake in her data in the federal government register known as the Cadastro Único (CadÚnico) for “social benefits”. In November, on one of her trips to CRAS, the social assistant told her that her daughter’s income, who was now employed at the company where she did an internship during college, was considered part of the family income. But the daughter was married and living in another home for more than a year. How do I have an income of R$2.000,00? It doesn’t exist - she said in reference to her daughter’s income. The social assistant revised her records but said that she did not have the power to reverse the blockage of assistance. She could approve Arlinda to receive the Family Grant once again. She asked her to come back o CRAS in February to verify the situation.

In March of this year (2021), after having returned to CRAS, she told me that, according to the social assistant, all the documents are in order, but the payment was still not approved. Now I am waiting. In January of this year, with help from a loan from a neighbor, Arlinda went back to work, this time selling quentinhas (warm meals) on the beach. In March, when the city government closed the beaches, prohibiting the presence of peddlers, due to the worsening pandemic, she told me by phone:

I saw an interview on television with [city mayor] Eduardo Paes who said that he will give R$500,00 to 13 thousand registered peddlers, but I am not registered. So what should the people who are not registered do? Die of hunger? Doesn’t he have the awareness to know that most of the peddlers are not registered? I am speechless about this mayor. There are 13 thousand people registered. Look how many peddlers there are in Rio de Janeiro. I am sure that 70% of the peddlers are not registered!

When I researched the city government decree that establishes a “benefit” for peddlers, I noticed that it also announced an increase in the food benefit in the form of a “food card” offered by public schools for families of registered children. Arlinda’s children, however, no longer have the right to the food card because they are registered in a state school, and the “benefit” is for students in municipal elementary or intermediary schools. During this conversation, she told me:

Well, I have no card, I am living without any benefit. I don’t know if I will get the new assistance, I still haven’t received the family grant, I won’t get this help from the city government for peddlers, until now there is no food package at school, my son went there today. I am at God’s mercy.

Among the “benefits” mentioned above, Arlinda mentions the new assistance of 2021, which at the time was still not being distributed. It was that week that the federal government announced a new emergency assistance for 2021, which was based on the registration made the previous year. Among the groups that did not have the right to a “benefit” are those who “had the emergency assistance canceled”. Because her data at CadÚnico was updated after the “benefit” was “blocked”, her assistance was “cancelled”, making it impossible for her to receive the new assistance in 2021⁸. According to the special report from the Institute for Applied Economic Research (IPEA), the emergency assistance generated a 54% increase in the “real income” of the “very low income” families (IPEA, 2020: 7). When I compared Arlinda’s income before and during the pandemic (considering only the first semester, a period in which she received assistance), I noticed an increase in family income, to the degree that the amount of assistance increased the amount that she was able to earn selling candies and sweets in the street. However, it was clear how much of the auxiliary assistance received in the first semester was left in the supermarket, due to abusive prices, and used to pay overdue bills. Arlinda often said that the money does not stop at home, it says hello and goodbye right at the door, which can be seen as a trait of the current economic crisis. The emergency assistance policy, when analyzed considering the daily life of informal workers, has proven to be insubstantial, demonstrating that other indicators, and not only “effective income” should be considered when evaluating a public policy. In addition to leaving it in the market and paying the bills, the assistance has also been used by many people to pay debts, as presented below.

“Living from help”

Since the beginning of the pandemic, I noted that the word help appeared with greater frequency, both in informal conversations with Arlinda, and in our bi-weekly interviews. The help materialized in daily life in many ways. In the form of donations, loans of things or money, which in turn can come in the form of fiado [sales on credit] or passar o cartão de crédito [using someone else’s credit card], bill paying etc. As mentioned, I accompanied Arlinda’s daily life for some time and it became inevitable to make comparisons between before and during the pandemic. The various modalities of help were always part of relations with neighbors and family members in which she is engaged. I have noted, however, a qualitative change in relation to the finalities of the forms of help. While in 2019 Arlinda asked for help to invest in infrastructure and other work materials (such as a stove, pans, a cart to sell food), to make repairs at home (like the refrigerator and micro-wave), or even to buy furniture or appliances, during the pandemic she has needed help to buy food, pay bills and have medical exams. The help has been, each day, more focused on maintaining the so-called basic needs of life. The issue that I would like to emphasize is that much of this help is in the form of loans, which increased the level of family debt. In the text Surviving debt, survival debt in times of lockdown, Guérin et al debate the growth of debt related to the social reproduction of life in rural India during the pandemic. As much as they present data from a context very different from that which I discuss in this article, some similarities can be found concerning social factors that lead families to contract this “survival debt”:

Low and irregular real incomes are one such factor, given the persistence of informal and vulnerable employment (ILO 2018). Expenses are meanwhile increasing. Self-consumption, long a pillar of food security for rural families, has declined sharply over the last decades. Access to basic services such as water, electricity, housing and healthcare are becoming increasingly commodified (Guérin et al., 2020: 3).

Although this section also addresses debts and loans, I chose to use the term help because this is how Arlinda refers to these relations. The terms give and borrow are often shifted, in her statements, from the abstract meanings that are commonly attributed to them. At times, money received that does not need to be paid back, as when her daughter transfers money to Arlinda, is framed by the verb loan (my daughter loaned me R$100,00). This can be related to feelings such as shame or to other elements that permeate family relations, to the degree that debts and donations are social relations, which can be based on solidarity, and on asymmetries and hierarchies (Ibid: 4). In any case, donations and loans, even when they are shifted from their abstract meanings, are usually classified by Arlinda as forms of help, even more so during the pandemic, when she felt needy (necessitada). To visualize the network of help that has sustained Arlinda’s daily life during the pandemic, I constructed the chart below, which registers flows of money and items, as well as people, who participate in these various forms of loans and donations.

CHART 1:
Arlinda’s help network

Month/year	Person/institution	Form of help	Purpose
Sept/20	Aunt	R$ 100,00 loan	Supermarket
Sept/20	Milu (neighbor)	Bought laundry detergent, bread and paid bus fare to church	Supermarket and transportation
Sept/20	Daughter	Loaned me the Food Card she earns at work	Supermarket
Sept/20	Public school	Gave me a food package	Food
Sept/20	Maria (neighbor)	Used her credit card for me (R$ 300,00)	Supermarket
Sept/20	Milu (neighbor)	Loaned me a nebulizer	Health
Oct/20	Maria (neighbor)	Used her credit card for me	Supermarket
Oct/20	Researcher	Money you gave me (R$ 550,00)	Supermarket and paying bills
Oct/20	Researcher	Money you gave me (R$ 550,00)	Supermarket and paying bills
Nov/20	Daughter	R$ 100,00 loan	Paying debts
Nov/20	Daughter	Loaned me the Food Card she earns at work	Supermarket
Nov/20	Daughter	Gave me R$ 100,00	Paying debts
Nov/20	Researcher	Money you gave me (R$ 300,00)	Paying debts and bills
Nov/20	Public school	Gave me a food package	Food
Dec/20	Daughter	Paid my electrical and gas bills	Paying bills
Dec/20	Daughter	Paid an installment for the cart [equipment for work] to the neighbor	Purchase work equipment
Dec/20	Aunt	R$ 100,00 loan to pay for the cart	Purchase work equipment
Jan/21	daughter	Paid my electrical and gas bills (R$ 200,00)	Paying bills
Feb/21	Gaúcho (neighbor considered a cousin)	Bought the meat so I could begin to sell hot meals (R$ 300,00)	Return to work
Feb/21	Maria (neighbor)	Used her credit card for me (R$ 522,00)	Purchasing pans and other materials to sell hot meals
Mar/21	Andrea (neighbor)	Purchased the food containers on loan (R$ 50,00)	Sale of hot meals

I have participated in Arlinda’s help network for some time. This relationship began when we were neighbors at the time that I lived in the condominium to conduct field research for my master’s degree. With the exception of the researcher, who is no longer a neighbor, her family members and neighbors participate in her network of help. They are certainly ties of a distinct nature that, in turn, generate different forms of help, in the terms of exchange and the returns expected. While her daughter does not expect to be paid back, Maria (a neighbor) counts on being paid back so she can pay her credit card bill, whose due dates always scare Arlinda. The neighborly relations, by representing much more than a simple geographic proximity, produce forms of “interpersonal participation” (Pina-Cabral and Godói, 2014), and are anchored in the fact that the families share needs (Márquez 2014: 55). Maria is one of the main characters in this help network. In November, she lost her job, an event that directly affected Arlinda’s home.

Maria lost her job, the old man who she cared for died, she was dismissed and there is nothing else…she said that the credit card is her daughter’s, since she is no longer working, the daughter took her card. She always helped me, if I need, she goes to the market, pays the bills, she trusts me.

Trust is a central value in the economic exchanges and transactions, even those that can appear to be impersonal, such as banking transactions. As Hart affirms: “the idea that transactions involving money are essentially amoral comes from their objective form, but until recently, even in societies using impersonal money, the bulk of economic life was carried out by people who knew each other and could discriminate between individuals on that basis” (Hart, 2007: 13). In the case of Arlinda’s help network, trust is what allows Maria to continue to help Arlinda to maintain life. A non-payment of a loan, on the other hand, can break the trust of a relationship and generate shame. In February of this year (2021) Arlinda told me that she was not able to pay for the containers for the hot meals that she pegou no fiado [bought on credit] from one of her neighbors. This caused Arlinda enormous shame and she avoided passing by her neighbor’s house, because she gave her a bad look. In addition to the moral values involved in the field of possibilities of maintaining life, it was clear how the life of people who participate in a help network intersect to the point that material transformations that occur in one home produce strong impacts in other homes⁹. Help is a component of economic transactions and can be used as currency in daily life.

This help network, which is permeated by moral and monetary values, needs and obligations, is forged by ties of kinship and neighborhood, and is usually triggered at times when fear and desperation (which have been nearly constant recently) affect Arlinda. The fear of having the electricity cut approaches each time Arlinda sees from the window the men from Light [the electric company], cutting other people’s electricity¹⁰. Despair approached on Christmas Eve when her refrigerator had only rice and beans. Anguish arose in October and November when she was not able to pay the fees related to individual micro-company (MEI)¹¹, which makes more difficult her guarantee of a future retirement pension. She felt shame for not having paid the debt for the food containers that she bought on credit. These are all corporal affects that shape the difficult situation in which she lives and that had her turn to her help network. Another frequent sensation in her life is the fear of having a heart attack, since she has not had the financial means to pay for the exams recommended by the doctor of the family clinic in her neighborhood (the public health clinic).

“Life isn’t worth anything”

I am here with my leg very swollen, I live swollen, I cannot step on the ground, I am not a doctor, but I think its thrombosis. I saw that thrombosis goes to the lung and causes a pulmonary embolism, I saw a cardiologist talking on television. I go there [to the clinic] but I am sure that they have no doctors, but I go there. Tomorrow Milu [a neighbor] will go there with me. There are days I can’t step on the floor. It’s very sad, a poor person doesn’t care for themselves not because she doesn’t want to, but because she can’t. A rich person coughs and goes to the hospital, a poor person only goes when she has pneumonia or worse, the poor person knows there is no care. I go there, but I know there is no care. I have a neighbor who is 78 years old, her husband needs an expensive exam, she tried to do it, but couldn’t, they told her to go to SISREG [Health Regulation National System], a person could die waiting, the person dies, because they couldn’t do the exam, that’s how the country is. I know that I will go there for nothing, I will even have to drag my leg. And you know what’s worse? They send a nurse and a student to see you, my neighbor got a prescription from a nurse to get medicine from the pharmacy, because there was none at the clinic, but the prescription was made by the nurse, and the pharmacist did not want to give her the medicine, because a doctor has to write the prescription. Then they have a nurse attend to us. Sincerely, I am afraid to die when I go there, because who knows, they give me one of those injections that causes a problem….this clinic is falling apart.

The long quote transcribed above is only a portion of the narratives of health and illness that Arlinda produced during the study. In the book Affliction: health, disease and poverty (2015), when speaking of the narrative of disease (a gender constructed by medical anthropology that is based on the patients’ experience of their infirmities), Veena Das sought to understand disease not as a dramatic and disruptive instance in life, but as part of the scenes of daily life, to the degree to which they are associated with family relations, small domestic decisions, and family expenses and income. During the pandemic, narratives about health and disease can say much about the articulation between the ordinary aspects of life and the extraordinary event of Covid-19, which transformed the forms of care and the opportunities for access to public health infrastructure. To enter this narrative genre can help understand what I called in the introduction the overlapping of inequalities, demonstrating that to speak of health and disease implies reflections on a series of issues, which go beyond symptoms, diagnoses and cures (used as biomedical terms).

Arlinda lives with three chronic diseases: high-blood pressure, a heart murmur and asthmatic bronchitis. In early 2020, she said that the blood pressure medicine began to make her feel bad. I became short of breath, I felt my throat, I felt my chest tighten. Disturbed and concerned, she tried to go to the public family clinic in the neighborhood to change the medication, but was not able to, since all the appointments were suspended due to the pandemic. Only people suspected of having Covid-19 were attended. In addition to Arlinda, other residents of her low-income condominium where she lived said that the doctors barely got close to the patients, and shouted at the door to go home. Since her body continued to show signs that it was not healthy, she decided to stop taking the medicine.

In the ten weeks that I issued the questionnaire from this study to Arlinda, in only two did she not report a “worsening of symptoms” related to here chronic corporal conditions. In all the other weeks, swelling and pain in the legs were recurrent, in addition to times when she felt a lack of air.

In September, she was finally able to be attended at the family clinic, given that the consultations began to return to normal in the second semester of the year, which may indicate that this was a period between the so-called waves of Covid-19. Although she later complained considerably about the service, due to the long wait, Arlinda was able to see the doctor after many months. During her consultation, the doctor suggested that the swelling and pain in her legs could be related to her heart murmur and emphasized the importance of the medication for hypertension and the need for weekly monitoring of her blood pressure. The doctor could not, however, prescribe just any medication, nor substitute the previous medication for her blood pressure, or for Arlinda’s heart problems, without seeing some exams. The doctor gave Arlinda a series of requests for medical exams, including an electrocardiogram, an echocardiogram and a series of hormonal exams that required a blood test. The big problem is that most of these exams had to be done in private laboratories, because they are not offered by the public healthcare system.

That week, noting Arlinda’s concern with her health and with the expenses she would have from the exams, I called some labs to see the costs. Arlinda also went to a laboratory in her neighborhood to see the prices. The cost of all the exams was about R$450,00, which scared Arlinda. She did not have money and she could not ask her neighbor who had used her credit card to help Arlinda, since she had not paid the previous debts. She wound up not doing the exams. What’s worse there is no use going back to the clinic, because the doctor said that she could not give me medicine without seeing these exams.

In October and November she spoke of tingling in her arm and piercing sharp pains in her chest. This combined with a strong fear of a heart attack. In October she fainted while she was working in the street giving out flyers for candidates during the election period. She was helped by people walking in the street and went to the clinic, where she discovered that her blood pressure had reached 23 by 18. The doctor reinforced the need to do the exams, and told her to go to the clinic three times a week to measure her pressure to monitor its variations, since it is precisely oscillations in pressure that lead to events like a heart attack. A few weeks later, when I asked if she was going to the clinic to check her blood pressure, she told me: of course not, that clinic is torture, I get hungry there, I arrive at 8 in the morning and I am only attended at noon, that is when they have a doctor and they don’t have a nurse attending. I have to have this device [to measure blood pressure] at home. In many of our interviews, I could note countless criticisms made by Arlinda towards the public family clinic in her neighborhood. She and other residents usually avoided the space, and only go in great need. In addition to the lack of doctors, many complain that they solve everything by giving out dipirona. I even heard, that the pharmacy at the clinic was so undersupplied in that period, that at times they did not even have dipyrone¹². There are many families in the condominium who avoid the clinic and turn to self-medication, home remedies, private institutions, health plans and even politicians related to local powers, like the militia, to obtain appointments and opportunities to have surgery or medical exams.

In December, based on an agreement with one of her neighbors, Arlinda began efforts to buy a cart to return to selling food in the street. She first gave R$300,00 to her neighbor, from whom she only got the cart after paying the remaining R$400,00. The deadline agreed to for the payment of this amount was set for the end of January. The efforts to go back to selling in the street made the possibility of doing the exams even more remote. Her priority became the cart, and not health. While she sought the money to pay off the neighbor, Arlinda began to sell quentinhas [hot food] on the beach. She went to the beach nearly every day at 10 in the morning, after cooking and wrapping the quentinhas in the four hours before leaving. On the beach she walked in the sand hawking the food for many hours until she returned home about 4 pm. The swelling and the pain in her legs still bothered her a lot, but I think it’s better than staying home and earning nothing, that’s why I try not to care about my leg. To handle the pain, she often takes Dorflex, a muscle relaxant available without prescription that allows her to maintain her routine. According to Veena Das, the temporalities of the narratives and the practices of healthcare and disease in families with low monetary income are intimately linked to the precariousness of work and to the irregular flows of money in domestic units (2017: 322).

At the intersection between the temporalities of work, the monetary flows and the therapeutic practices of the local practitioners specific modes of dealing with the infirmity are created that emphasize immediacy and the short term more than adequate diagnosis and care (Das, 2017: 323).

Self-medication and the priority given to the cart in detriment to the realization of the exams point to the intersection between work, monetary flows and small decisions about health and disease. Considering the health of informal workers implies adopting a global perspective about inequalities. Precarious access to healthcare and inequities of work and income intersect with other forms of inequality, such as nutritional and food conditions. The absence of meat, fruit, vegetables, and greens is evident when comparing the food conditions of Arlinda’s family before and during the pandemic. When I proposed this comparison during an interview she said:

[Our eating habits] certainly changed a lot, I was selling my things, I worked, I bought what I wanted to eat. There is this difference. I stopped buying meat, vegetables, greens, fruits. I love fruits. And vegetables are good for you, they help the blood pressure, cholesterol, everything. You eat more pasta, and less fruits and vegetables, it only gets worse. When there is chicken, I eat chicken, when there isn’t, we eat sausage, if not, rice and beans.

According to the Brazilian Network of Research in Food Sovereignty and Security, hunger, a structural problem in Brazil, was aggravated in the period of the Covid-19 pandemic, reaching the level of 19.1 million people. The same study reported that 117 million people in Brazil live in a situation of food insecurity¹³. The relations between income and access to food are close and direct. The reductions and later cutoffs of the emergency assistance payments impact the opportunities of low income families to access a complete diet. Women heads of families are the group most affected by hunger and food insecurity, because they have low income and are those most responsible for care networks. This often makes inviable opportunities to work in the street, for women with children or people with disabilities. If work and income determine the nutritional conditions of Brazilian families, the situation of food insecurity is linked with the healthcare conditions of the most vulnerable populations.

The narratives about health and disease constitute a form of knowledge about daily life (Hydén, 1997: 52). It is necessary to pay attention to them, to the degree that they articulate events related to disease (pain, crises, etc.) to other events that concern the social conditions of life (healthcare crisis, suspension of care, lack of doctors and medicine) (Ibid: 53). The narratives about health and disease contextualize the individual trajectories in broader frameworks. They are also forms of expressing suffering (Kleiman, 1988). Not suffering understood in an individual dimension, but suffering that emerges from the social conditions in which life is inscribed. To speak with Arlinda about her healthcare and her chronic corporal conditions reveals important aspects, not only about symptoms and diagnoses, but also about the economy of her home, the “institutional negligence” (Das 2015) to which the urban poor are submitted and in the final instance, about how life is (de)valued. The politics of valuing and devaluing life (Fassin, 2006; Butler, 2018) are carefully developed by Arlinda through her daily experience

I was shocked when I saw people dying [from Covid]. The man inside his car for a week waiting for an open [bed], of course he died, when he got the opening, he had died. That is, life has no value. I can’t get this virus, if I do I’m destroyed. They dismantled the field hospitals, now they are racing to mount them again. Why did they take them down if the disease didn’t go away? And now what will they do? Will more die than at the beginning? [referring to the increase in the number of deaths in early 2021].

If her experiences and formulations express fears and anguish, they also speak of hope and conviction about the value that life can have.

Polysemes of hope

Is it possible to live a good life in a bad life? Inspired by Adorno, Butler (2018) presents this question in the book Corpos em aliança e a política das ruas: notas para uma teoria performativa de assembleia (Notes Toward a Performative Theory of Assembly). This question is related, in turn, with another question also present in the book: how can someone lead a life if not all the aspects that conform to life can be conducted by the particular subjects? (Butler, 2018: 216). Observing efforts people make to live a better life, a decent life or a good life, in addition to allow reporting about the moralities involved in daily life, can also reveal what people understand life to be. For Butler, the concepts about what is life are directly related to what she calls the “social configuration of life”. If one of the objectives of this text is to explore the intersection between how Arlinda conducts her life and the “social configuration of life”, which addresses the countless forms of inequalities mentioned, I believe that to analyze how it elaborates the hope for a better life, or of a change of life, can contribute to the understanding of how people incessantly seek to make life at least “viable”, in Butler’s terms, in conditions of exacerbated precariousness. As will be seen, the hope nurtured by Arlinda upon leaving a difficult situation in which she lives is always accompanied by a critical elaboration about the policies that devalue life.

It is interesting to think of the forms of hope, understood as a modality of engagement with the world and production of knowledge (Miyazaki, 2004), embedded in the forms of orientation towards the future, expressed by Arlinda in our conversations and interviews. Images of the future, which sustain life in the present, compose the space-time of the imaginary (Crapanzano, 2005: 354), which “engrave the real on the reality”, which in turn stimulates production of the imaginary (Ibid: 365)¹⁴. Imaginative horizons are not only limited to psychological capacities or aesthetic conventions, but are also defined by socio-economic, political, and cultural arrangements (Ibid: 369). In this sense, objects of hope vary according to historic time (Burke, 2012). There is no way to separate the precarious conditions of hope, given that, often, and this became evident in Arlinda’s case, fear and anguish, exacerbated during the pandemic, are the affects that produce the need for hope. In most cases, hope towards the future appears in the conversations along with narratives of survival, marked by desperation and by the difficulty in having an expectation of changing the difficult situation.

The term survival appeared at times during the study. Often, at the beginning of the conversations when I would ask Arlinda “how are you?”, her response was; I am surviving. Once, when we spoke about romantic relationships and affective life, when telling me that she had no interest in finding a boyfriend, she said: it’s because my priority is to survive and finish caring for my sons. The term survive does not appear in Arlinda’s statements as a way of life marked by scarcity and lacking creative engagement with the world, as is commonly thought about this category. To the contrary, survival here expresses the indestructibility of experience, which is composed and recomposed in narratives that speak about her own precariousness (Didi-Huberman, 2011)¹⁵. For Derrida, the word survive, as a supplement of life and death (Facina, Silva and Lopes, 2019), relates to a form of vision. The sobrevida [Portuguese word that refers to the time between a diagnosis with a lethal disease and death] also means to say a form of sobre-ver [seeing above], to see beyond the visible (Derrida, 1979: 137). And it is precisely through the imaginary that one can see-beyond, while experience is expressed in the persistence of the images of the future, despite and through its precariousness. Arlinda usually sees beyond life lived in the present in various ways. In most cases, her faith in God functions as a basis for hope in a future that is different than what is lived in the present. Although God is present in most of her formulations about the future, I note that the forms of hope navigate in a gradient that varies - in my terms - from an abstract pole (more dependent on faith in God) to another that is more concrete (related to work, to monetary flows and the improvement of living conditions). In a conversation in early 2021, I indicated that I was pessimistic about the direction of the current health crisis, saying that “I think that this year [2021] will be like last year. I am pessimistic”. To which she responded:

No! We must think that God will change the direction of history. I have hope that things will get better. After having this vaccine, the good sales will return, because now the large companies are afraid to hire people. You walk in the streets, they’re all empty, the shops are empty, empty streets, why is that. They don’t want to hire. But I have hope that God will change things. It’s not by the hand of man, it’s by the hand of God.

The meanings of hope are accompanied by critical analyses that Arlinda makes about the government, social isolation, and delays in the vaccination process, and in relation to her own daily life and the possibilities for change in the difficult situation. Once, when we spoke about the cart in which she was investing for her work, she said:

When I have a cart I will put on four masks, a visor and I will go to work. I wanted to stay home, but I can’t. The problem is that I can’t stay at home anymore, my situation is so precarious. There’s no way, it’s very bad to need things now because nothing is coming in. Everyone is like that here [in the condominium] the people are dying from heart problems, but not from Covid. It’s because no one sees a way out, there is no employment, they die on line at the hospital, their son asks for things, they can’t give them. I have to go back to work. When I get the cart, I will have to have the money to buy the material, but I will. God will bless us. If you kill hope, the world is over. God will bless, I am sure, when I put my hand on my cart I will gain strength. Then I will be ready, now I have to, I have to get to work. I think of this all day. I have a lot of hope, many ideas, I know everything that I am going to sell. I don’t have money, but I have ideas. I wanted to begin today!

If in the first way that hope is presented her projection for the future is based on the expectation that God will change the course of history, in the second hope materializes in the monetary gains that the cart could provide, so that she no long needs things. In any case, in both senses of hope uncertainty is presented as a key element that permeates life. Hope, as a social and cognitive resource that makes contingency understandable, allows people to manage uncertainty (Visacovsky, 2019: 8). As Silva and Alencar affirm, hope is a semio-linguistic resource that allows people to oppose violence through the construction of a perspective of survival (2018: 368). In the words of Bloch, coined through his Aristotelian concept of matter as that which involves both that which exists and that which is possible, hope is the denial of indigence and privation (2005: 28). For Arlinda, to keep hope alive means to sustain life itself.

If one inhabits life through language (Das, 2007), the attention given to categories that produce the contours of a possible life become fundamental. Hope, as affect¹⁶ and category of experience, is responsible for the projection of images of the future that allow Arlinda to continue to inhabit the world. The relations between world and hope, indicated by the phrase if you kill hope, the world is over (se matar a esperança, o mundo acaba), indicates the essential role that it has in maintaining the shapes of the particular world of subjects, in the terms of Veena Das (2007)¹⁷. The possibility of losing a world -“worldlessness”, in the terms of Pina-Cabral (2018) - are related to the “failure of the public world”. This occurs when the expectations of the subjects in relation to the conduct of their lives no longer corresponds to what is presented in public life. The alienation of a world, or the difference between the world of experience and the public world, are based on a strong sense of uncertainty (Ibid: 78). The absence of a correspondence between world and experience, and in turn, a sense of uncertainty, can become aggravated in times of crisis, as in the case in the research of Pina-Cabral in the context of austerity policies in Europe. In the case examined here it is in the context of the Covid-19 pandemic. It is exactly when the “world fails” in this author’s terms, that hope appears as an affect that can allow life to continue its course. The hope of living a good life is directly related to unemployment, the vaccine, the healthcare crisis, that is to the politics of valuing and devaluing life. Based on faith in God, or on work opportunities, hope is found in the possibility that life has some value.

Final Considerations

Through an accelerated induction of the precariousness of life (Butler, 2018), neoliberalism affects the ability of people to have hope (Miyazaki, 2004). The unequal distribution of hope is a constitutive part of the politics of valuing and devaluing life that makes the maintenance of daily life a great effort for many populations. Indetermination, a condition of possibility for the work of hope (Miyazaki, 2004: 27) is aggravated when the extraordinary events of crisis come to inhabit life. How do people manage the uncertainty of daily life (Visacovsky, 2019)? How are strategies developed, resources triggered and practices of survival developed when the sanitary crisis shapes life? What do people do to dream when they must respond to the urgent needs of the present? The description of Arlinda’s daily life in the pandemic sought to be guided by these questions.

The investigation of and waiting for “social benefits”, the help network, the small decisions about health and disease, as well as the criticism of the policy of devaluing life and the forms of hope are ways to handle uncertainty. If the inequalities of work and income, infrastructure and healthcare are sharper during the pandemic, making life even worse, the investigation of the forms of accessing the state, the work of collaboration, the critical development of forms of steering and producing a “bad life”, as well as the continuous effort to keep alive hope of a more decent future, are part of an ethical-political work that aims to change life. Life, which is not given or homogenous, is elaborated in various ways by narratives and practices, to the degree to which Arlinda is engaged with the world and produces knowledge about daily life.

Care for oneself, however, does not only depend on how an individual conducts one’s life. It is subject to the mechanisms for unequal valuing of life, to the degree to which people are exposed to the other (and to being governed by the other) and are vulnerable to socioeconomic and political arrangements. To live without benefits implies living life anchored in a network of help. The effects of the Covid-19 pandemic on the world were not homogeneous, given that markers of differences such as gender and social class produce bodies marked by precariousness (Pierobon, 2018). In addition to being responsible for her own body, as a woman, mother, head of family, Arlinda is responsible for the bodies of her sons and for managing the home. Maintaining a home, with all the challenges and concerns that this involves, was even more difficult during the pandemic. In addition to depending on “benefits” that she can obtain from the state, maintaining the home is an effort that goes beyond and affects other homes (Araújo Silva, 2017; Marcelin, 1999; Motta, 2014). It was also seen that the narratives of health and illness directly involve the work of keeping a home, from the time when the unequal access to healthcare causes new expenses to be considered in the daily handling of money.

Keeping hope alive, which is arduous work that is redirected in times of crisis, allows life to follow its course. The fear, anguish and tensions related to precarious life are affects that require a constant anticipation of the future and permanent attention to the forms of handling uncertainty. If conducting daily life is inserted in the “social configuration of life”, then the hope that life comes to be worth something is subjacent to the expectation of changing the difficult situation.

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• 1
  For a counterpoint to the perspective of scarcity and suffering of the oppressed based on a focus on hope see Lempert, 2018.
• 2
  This text is the fruit of my participation in the study “Social factors that influence the adhesion to the quarantine and distancing in the prevention of Covid-19”, coordinated at an international level by professors Veena Das and Clara Han of Johns Hopkins University in the United States and in Brazil by Camila Pierobon (CEBRAP), Taniele Rui (UNICAMP) and Paula Lacerda (UERJ).
• 3
  For a reflection on the experience of informal workers who live in the low-income housing of the Minha Casa Minha Vida, through the description of Arlinda’s daily life, before the Covid-19 pandemic, see Petti 2020.
• 4
  Arlinda is referring to the intense public debate that began in mid 2020 in Rio de Janeiro about the declarations of the mayor, according to whom in-class education would resume in public schools. This generated enormous indignation from education professionals who organized a “strike for life” to prevent the return to in-class education in the middle of the pandemic. The doubt and hesitancy towards the return to in-school classes left many families confused.
• 5
  https://economia.uol.com.br/noticias/redacao/2020/09/12/auxilio-emergencial-bolsa-familia-pagamentos-cancelados-suspensos.htm
• 6
  A federal government controlled bank responsible for emergency assistance payments.
• 7
  The smartphone app used by the federal government for registration, information, and bank transactions related to the emergency assistance and other “social services”.
• 8
  There was a sharp reduction in the value of the emergency assistance in 2021. For those who live alone, the payment is R$150,00. Families with more than one person where a woman is not the leading earner get payments of R$250,00. Finally, the families led by women receive R$375,00. Source: https://economia.uol.com.br/noticias/redacao/2021/03/18/bolsonaro-auxilio-emergencial-2021.htm.
• 9
  The concept that best expresses what I am affirming about the interlinking of homes and lives is that of the “configuration of homes” as used by Marcelin (1999) and Motta (2014). To understand that homes are never isolated from what happens in the street and in other homes helps to deconstruct the public-private dichotomy, a moral foundation of capitalism (Hart, 2007).
• 10
  At the beginning of the Covid-19 pandemic the National Electrical Energy Agency (ANEEL) determined that cutoffs of electrical supply be suspended for three months for low-income families in debt. The period of the measure was not sufficient, given that many families continued to have difficulty paying the electrical bill even after the first three months of the pandemic. In March 2021, ANEEL re-issued the measure, to extend it until June 20, 2021.
• 11
  Four years ago Arlinda began to pay the fee for the micro-entrepreneur company [MEI] in the amount of R$56,00, after the manager of her condominium advised her to stop paying the National Social Security Institute plan each month (INSS) and form a micro-company, which was cheaper and had a guarantee if she got sick.
• 12
  Although she stopped taking the blood pressure medicine because she felt so bad, I noted that the absence of medication in the pharmacy at the clinic in early 2020 was another factor that influenced Arlinda to take this decision. The absence of doctors and medicine and the delays and lack of quality service are related to the advance in the crisis in public healthcare in Rio de Janeiro which has been increasingly aggravated since 2015. See Freire, 2019.
• 13
  Source: https://www.redebrasilatual.com.br/cidadania/2021/04/pessoas-com-fome-19-milhoes-inseguranca-alimentar-dispara-no-brasil/
• 14
  Crapanzano makes a criticism of an empiricism that ignores the dimension of the imaginary, understood as a constitutive part of all experience, perception and thinking (2005: 367).
• 15
  When discussing Benjamin’s idea of the exhaustion of experience in contemporary life, Didi-Huberman affirms that even when reduced to survival and the furtiveness of simple flashes of light in the night, experience is indestructible (2011: 78).
• 16
  I work here with the definition of affect formulated by Spinoza (2007), according to which an affect is an affection felt in the body that at any time can be strengthened or reduced by ideas that carry these affections. In Spinoza mind and body are not separate.
• 17
  Upon studying experiences of violence with Indian women, Das asks: how does one inhabit a world? How does one lose a world? The idea is to understand how the memory of violence, upon penetrating daily life, is capable of annihilating the particular worlds of subjects. How do I make a world my own? With this question, Vas calls attention to how, through daily experience, subjects elaborate and inhabit life.

• Translated by: Jeffrey Hoss

Datas de Publicação

• Publicação nesta coleção
  13 Jun 2022
• Data do Fascículo
  2022

Histórico

• Recebido
  30 Maio 2021
• Aceito
  13 Set 2021