Abstract

Immigration and refugee status protection are growing phenomena in Brazil and the city of São Paulo is one of the largest hubs in the country for this heterogeneous population. Various studies reveal barriers faced by immigrants and refugees in Brazil to receive quality public healthcare services including linguistic issues, cultural differences, socioeconomic barriers, xenophobia and racism. People with disabilities are another heterogeneous group that encounters barriers in healthcare services in Brazil. Studies reveal that people with disabilities face physical, architectural and ableist attitudinal barriers in healthcare services in the country. This text seeks to highlight the necessity for qualitative research at the intersection of disability, immigration and healthcare in Brazil using international and domestic studies and ethnographic observations of the healthcare experiences of a Bolivian immigrant woman with temporary disabilities and the mother and caregiver of a Bolivian immigrant woman with disabilities in São Paulo, Brazil.


Although Brazil has seen a marked increase in studies on healthcare access for both people with disabilities and the growing immigrant population, little is known about immigrants with disabilities in the country. Cuts to the public healthcare system, the SUS (Sistema Único de Saúde) (Alvim, 2019), along with changes in laws mandating the rights of immigrants necessitate more research (Santos and Sirangelo, 2019), not only on the healthcare of populations of people with disabilities and immigrants independently, but also intersectional studies on the healthcare experiences of immigrants with disabilities in Brazil. Through domestic studies on healthcare access of people with disabilities and on the immigrant population in Brazil; international literature on research at the intersection of disability, immigration and healthcare; and limited ethnographic observations and data, the authors seek to expose the necessity for intersectional studies on the healthcare experiences of immigrants with disabilities in the country. Brazilian national literature on immigration used in this study will center mainly on Bolivian immigrants in São Paulo, as the empirical evidence used in this text derives from ethnographic research on said population.

The ethnographic observations stem from the principal investigator's (PI) doctoral thesis research 1 on the healthcare experiences of Bolivian immigrant women in São Paulo in motherhood and family healthcare. Two key informants of the study were Angela and Noelia. Angela, a mother of two adult sons, was 37 years old and had resided in São Paulo for eight years when she met the principal investigator (PI) in 2018. She had advanced uterine cancer and had temporary physical impairments from fatigue and heavy bleeding due to her disease that prevented her from working and limited her mobility. Noelia is a 44-year-old mother of two: a 21-year-old son; and an 18-year-old woman diagnosed with cerebral palsy, Elisabeth. They, along with Noelia's husband, lived in Brazil for almost a year when the PI first met them in June of 2018. Elisabeth has physical impairments that require assistance to walk, as well as both speech and hearing impairments. She was removed from school in the fifth-grade in Bolivia due to bullying, which her parents believe affected her vocabulary and comprehension skills. The PI assisted and accompanied Elisabeth and Noelia in accessing the public healthcare system in Brazil and in a number of medical consultations.

As the immigrant population grows and ages, it is likely that the population of disabled immigrants, a group that faces specific barriers for access to quality healthcare, will grow as well, requiring specific programs and measures to ensure their access to the SUS and positive healthcare outcomes. The authors wish to encourage discourse between academics, healthcare professionals and activists working with immigrants and people with disabilities. Understanding specific barriers faced by immigrants with disabilities allows for the design of measures to be taken to ensure access for this growing demographic in Brazil.

Immigration and Healthcare

Since the beginning of the 19th century, the municipality of São Paulo, principally the central region, has been a major hub for immigrants (Baeninger, 2012). The municipality of São Paulo is the largest financial center in South America and has the greatest population with an estimated 12,253,023 residents (IBGE, 2017). Recent studies show a total of 292,288 foreigner-born residents were documented in São Paulo between 2001 and 2017. In the aforementioned time period, the largest immigrant populations that moved to the state of São Paulo came from Bolivia, China, Haiti and Peru (in descending order) (Baeninger et al., 2017). According to the Federal Police, the number of registered immigrants in Brazil grew 160% between 2005 and 2015 (Velasco and Mantovani, 2016).

According to data from Conare, the National Committee for Refugees (Comitê Nacional para Refugiados) (ACNUR, 2020), Venezuelans, Haitians, Cubans, Chinese and Bangladeshis were the five nationalities that most often requested refugee status in Brazil in 2018. A total of 80,057 requests were submitted, nearly eight times greater than that registered in 2016 (10.308). Refugees are specifically protected by international law, defined as people outside of their countries of origin based on fears of persecution based on race, religion, nationality, political opinion or membership to a certain social group and as a result require "international protection" (UNHCR, 2020).

A uniform legal definition of the term "migrant" does not exist in the global context. The factors that cause individuals to migrate can be complex and often multifaceted. For example, people may migrate for better living conditions or for family reunification. They may also be displaced due to hardships caused by natural disasters, starvation or extreme poverty. Individuals who leave their countries of origin for these reasons normally are not considered refugees according to international legislation. For this reason, it is important to highlight that all refugees are migrants, but not all migrants are refugees (Genebra, 2015). Refugees are a part of migrant fluxes. In turn, when the authors refer to the immigrant population, individuals with refugee status or awaiting refugee status or asylum are considered part of said population.

Bolivians represent the largest group of immigrants in São Paulo, with more than 88,600 immigrants registered in the state between 2000 and 2015 (Baeninger et al., 2017). This number, however, does not reflect the total of Bolivian immigrants in São Paulo as many of them remain undocumented for various reasons. 2 Estimations of the total population of Bolivians in São Paulo vary widely and range between 200,000 and 500,000 individuals (Lachini, 2014; Xavier, 2010). The majority of Bolivians arrive in São Paulo due to employment opportunities in the garment manufacturing industry.

A specific regulation for access to healthcare for immigrants does not exist in Brazil, but the normative principles of Brazil's Federal Constitution and the law that establishes the SUS do not prohibit the universal and free access to healthcare services of the system due to legal status. Anyone can access the SUS disregarding nationality (due to its status as a universal system). At registration with the SUS, a photo identification card and proof of residency are required. 3 Waldman (2011) affirmed that the majority of Bolivian immigrants in São Paulo that she interviewed in her study had accessed the SUS at some point. Healthcare services are an important point of inclusion of immigrants in mainstream society in São Paulo. The SUS is vital, because in terms of identity, the SUS ID card serves as the first form of identification that many immigrants receive in Brazil because it is easier to attain than a National Migration Registry (RNM) card (Aguiar and Mota, 2004). 4

Due to the facility in access to the SUS, the Primary Healthcare Units, UBSs (Unidades Básicas de Saúde), have become an important point of contact with the immigrant population in São Paulo. Many studies have detailed the experiences of immigrants with the healthcare system in Brazil (Eberhardt and Miranda, 2018; Risson et al., 2018; Carneiro Junior et al., 2018; Martin et al., 2018). A project that has proven vital for the inclusion of the immigrant community, particularly Bolivians in the SUS, is the Family Health Program, PSF (Programa Saúde da Família). Xavier (2010) affirms that the participation of Bolivian immigrants in the PSF is fundamental to the inclusion of the Bolivian population in public healthcare in São Paulo. In 2001, the city of São Paulo municipalized healthcare, which included the expansion of the PSF in large urban city centers, including central neighborhoods where many Bolivian immigrants reside (Aguiar e Mota, 2004).

The operating principle of the PSF is based on primary healthcare, which facilitates the connection between Family Healthcare Centers (Unidade de Saúde da Família) with the community to establish a committed relationship with co-responsibility between healthcare professionals and individual users (usuários) of the SUS. The connection between a particular population and the Family Healthcare Teams (Equipes de Saúde da Família) and the demarcation of territories are the principle components of the objective of the PSF, which is focused on public health surveillance. Steffens and Martins (2016) affirm that Community Health Agents (Agentes Comunitarios) are vital members of the Family Healthcare teams as they circulate in the community to inform potential users, including immigrants, about the SUS, its services and public health campaigns. 5 Aguiar and Mota (2004) studied the communications between the healthcare professionals of the PSF and Bolivian immigrants in the Bom Retiro neighborhood in Central São Paulo. Bom Retiro is considered a "circulatory" or fluid territory because of Bolivian immigrants working in small, often clandestine, home-based sweatshops called oficinas, which have high turnover rates as individuals search for better opportunities in different oficinas and neighborhoods. 6 The authors affirm that in a neighborhood like Bom Retiro, it's vital to be flexible with standards of operation so that the bond between healthcare professionals and patients, principally immigrants, is maintained, especially because of the type of movement in the territory caused by the nature of work in oficinas. Aguiar and Mota reiterate the need for care to adapt to the reality faced by many Bolivian immigrants as there is a risk of creating barriers to access to healthcare services without flexibility.

Studies show that immigrants face cultural, moral and political barriers to receive healthcare services. They may have problems navigating a healthcare system that is new to them or face racism, xenophobia or other types of prejudice. Silva (2009) observed cases of social and ethnic discrimination in which healthcare professionals unfairly treated immigrant patients in UBSs in work with immigrants in the PSF.

There are also linguistic obstacles for access to quality healthcare for immigrants that don't speak Portuguese as a native language. If interpreters and materials are not available in the native language of patients, accessibility to healthcare services at every level could be affected, from making appointments, to consultation quality to adherence to treatment. Aguiar and Mota (2004) revealed that there are many obstacles associated with language comprehension for Bolivian immigrants in São Paulo, especially when one considers that Bolivians are neither an ethnically or linguistically homogeneous group. At times, an UBS or other healthcare center has professionals that speak a foreign language, like Spanish, but the immigrant speaks an indigenous language, like Aymara or Quechua.

It is also important that healthcare professionals be conscious of certain illnesses, conditions and injuries that different immigrant groups could be more susceptible to or already have due to working and living conditions or common health issues in their countries of origin. One example of health issues more often suffered by Bolivian immigrants in Brazil than the majority of the population is tuberculosis, which is related to work conditions in many oficinas with poor air circulation and long work hours (Goldberg, 2014). According to Martinez (2010), despite the decrease in tuberculosis in the general population of Brazil by 45%, the diagnosis of Bolivians in Brazil with tuberculosis rose 250% in 2010. Another example of a more common healthcare issue for the Bolivian immigrant population in São Paulo than the native population associated with incidence rates in their country of origin is Chagas Disease (Carneiro Junior et al., 2018).

Disability and Healthcare in Brazil

In Brazil, the national census of IBGE, Instituto Brasileiro de Geografia e Estatistica (The Brazilian Institute of Geography and Statistics) indicated that 23.9% of the population in 2010, approximately 45 million people, self-identified as having a "functional difficulty." In this total, many types of disability were considered, including anyone with some difficulty, great difficulty or an inability to walk or climb stairs, see, or hear, or any individual with a mental illness (depression, anxiety, etc.) or an intellectual disability (Loschi, 2017).

The concept of accessibility in terms of disability in Brazil is defined by guidelines discussed and approved at national and international levels. Accessibility for people with disabilities in the SUS is guaranteed in the general SUS legislation because it is a universal healthcare system. Accessibility, in general, is dealt with in Laws 10.048 and 10.098/2000 and Decree 5296/2004, which regulate the priority of care for people with disabilities or reduced mobility and establish standards for the promotion of accessibility. The decree deals with accessibility in a broad way, covering access to public spaces and buildings, housing, cultural spaces, collective methods of transportation and transportation terminals (Madeira de Loureiro Maior, 2017). The architectural standards for accessibility for disabled people are designated by ABNT NBR 9050 (Martins et al., 2016). The Brazilian Law of Inclusion (Law 13.146/2015) makes the important contribution of changing the legal concept of "disability", which is no longer considered as a static and biological condition of an individual, but as the result of the interaction of barriers imposed by the environment with an individual's physical, mental, intellectual and sensory limitations (de Brito & Morais Junior, 2019). The Brazilian Law of Inclusion is primarily recognized for allocating funding and implementing measures for inclusive public and private education for students with disabilities (Galindo, 2016).

It is noteworthy that Brazilian legislation is well developed in terms of guaranteeing the rights to health and general accessibility of people with disabilities, but most policies are not respected according to studies on experiences with accessibility for disabled individuals in public health units as well as legal studies (Leite & Ferraz, 2019). Said studies demonstrate the difficulty in accessing health services for disabled people due to architectural barriers, ableist attitudes and a lack of commitment and funds to provide accessible services for this group, often with specific needs. Unfortunately, there are no mechanisms that guarantee, in practice and in law, universal access in Brazil, even though it is one of the guiding principles of the SUS (Othero and Ayres, 2012).

In research by Juvêncio dos Santos Amaral et al. (2012) on accessibility to the SUS for disabled people, 64% of participants in the study reported difficulties in commuting to healthcare facilities and 42% reported inaccessibility in the internal spaces of health services. In a study by Xavier de França (2010), the sanitary facilities in 96% of the UBSs surveyed were inaccessible for people with many types of disabilities according to the architectural standards of NBR 9050.

Sulyvan de Castro et al. (2011) revealed that wait time was one of the factors reported as an obstacle in the use of health services and as a problem in both outpatient and hospital care. The authors highlighted that long wait periods can be a significant problem for users with some types of impairments, since they may have specific needs for food, hygiene and/or rest. Federal Law 10.048 guarantees disabled people, the elderly, pregnant and nursing women, and those accompanied by small children the right for priority attendance in these spaces. However, in hospital or healthcare services environments, this prioritization for a disabled person may be questioned for ethical reasons, since the individual with a disability may not be the user who needs the most care at that moment. Duarte de Rosário et al. (2013), concluded that the question of guaranteeing the right to the priority of care for people with disabilities is still not understood by many healthcare professionals as participants reported understanding this right as a privilege for disabled people and a priority for other populations.

According to Sulyvan de Castro et al. (2011), other factors that presented obstacles to the adequate use of health services by disabled people were difficulties with parking, inadequate accessible parking spaces and a scarcity of ramps or electromechanical devices to allow individuals with mobility impairments to enter or move between rooms of establishments. The authors noted a lack of elevators and signage for people with disabilities as well as insufficient seating in waiting rooms and a shortage of wheelchairs. Sulyvan de Castro et al. also noted that in some inaccessible healthcare centers, staff asked that patients with physical disabilities have an escort or attendant carry them throughout the facility. If the patient was without an escort or the escort was unable to carry the individual with disabilities, he or she was dependent on the willingness of healthcare professionals to carry them for mobility inside of the healthcare facility.

The study of Martins et al. (2016) on the accessibility of Family Healthcare Units, USFs, showed that USFs were not located in buildings suitable for the needs of disabled people. Many healthcare facilities are installed in makeshift buildings available in communities that were not built to meet the needs of all users and professionals utilizing the spaces.

Architectural barriers are common in Brazil. These barriers exist not only in healthcare services but also in almost all public spaces. Studies carried out in several parts of Brazil highlight the difficulties in accessibility for people with disabilities in their routes from home to healthcare facilities (Xavier de França et al., 2010). According to Xavier de França et al. (2010), the inaccessibility of public spaces for disabled people is symbolic violence that creates divisions and social hierarchies based on biological difference, isolating this group of people and indicating that they do not deserve and should not be part of the public sphere. This symbolic violence, which hinders the possibility for people with disabilities to reach healthcare facilities is another barrier for healthcare access. Due to the lack of adapted environments and accessibility in general, disabled people in Brazil tend to be less physically active than the rest of the population, which may further contribute to the emergence of associated comorbidities (Interdonato and Greguol, 2012). The barriers and limitations faced by people with disabilities are amplified in situations where their accessibility is not guaranteed. This causes dependence on conditions often out of disabled peoples' control to participate in activities and compromises their self-esteem and intellectual, social and cultural development (Martins et al, 2016).

In the case of people with sensory impairments, a study by Sulyvan de Castro, et al. (2012) shows how people with hearing impairments and multiple disabilities report difficulties to hear and understand workers in healthcare units. In the study, 35% of the interviewees reported problems hearing and understanding what was said in consultations with healthcare professionals. The authors affirm that difficulties in communication between patients and professionals may imply less use of health services, compromising the quality of life and health of those with hearing impairments. It can also complicate the doctor-patient relationship and decrease adherence to treatment and the patients' confidence in the healthcare professional. Ianni and Andrade Pereira (2009) demonstrate that people with hearing impairments face many communication barriers, such as difficulties in making appointments over the phone and a scarcity of interpreters. The authors also charged that in UBSs deaf patients were at times mistaken for people with intellectual disabilities and that there is a lack of patience of the workers in all levels of care and services, from reception to medical consultations. In the research of Xavier de França et al. (2010), 100% of the investigated UBSs did not have Braille resources for use by visually impaired people. In 75% of them, the floors had no regular, stable, firm and non-slip surface, putting users' physical safety at risk.

For many researchers, it is indisputable that the SUS made various positive changes possible for the healthcare of disabled people. Still, Othero and Ayres (2012) reveal an emphasis on healthcare services in rehabilitation and a lack of accessibility in primary healthcare units. In this way, medical rationality establishes that an improvement or increase in functional performance is the exclusive mission for healthcare for disabled people, neglecting processes and improvements involving healthcare related to life with an impairment. They concluded that there must be room in healthcare services to accommodate the demands of life projects and desires of disabled people, not only to cure or rehabilitate injuries or impairments, which are seen as the whole cause of a disability. This emphasis on healing the impairment over everything (even when it is incurable, or a cure is not the individual's priority), rather than focusing on promoting accessibility for the disabled person follows the medical model of disability (Hughes and Paterson, 2006). Thus, there is little opportunity to listen to individuals and their problems, making quality and integral healthcare impossible. According to Almeida et al. (2000), this model propagates the idea that social integration depends mainly on individual achievements and not on society working to promote the integration of disabled people through the implementation of accessible services.

Guedes de Mello (2012) emphasizes that overvaluing independence is a problematic ideal for many disabled people as well, because there are people who have impairments that can never live independently and can never work, even in the event that all physical barriers are eliminated. In research conducted by Othero and Ayres (2012), respondents reported that the primary factor for bettering the quality of healthcare services is to improve how professionals support and/ or relate to disabled people, fostering a relationship of respect, understanding and cooperation. In the practice of healthcare for disabled people, the primary demands and needs are often not due to the impairment itself but, in reality, come from social and relational issues that cause inequalities between people, necessitating changes in the organization of healthcare services and practices and the rest of society.

Intersectional Studies on Disability, Immigration and Healthcare

Intersectional health is a rarely touched issue in Brazil but offers new and more holistic perspectives on barriers faced in the SUS and ways to promote a fully universal healthcare system. As previously affirmed, both populations of immigrants and people with disabilities are heterogeneous groups with specific needs for access to healthcare services. With the immigrant population growing in Brazil, the arrival of immigrants with disabilities, the probability of immigrants already in Brazil developing an impairment and the possibility that immigrants have children with disabilities grow. The chance of certain immigrants developing or acquiring an impairment increases when one considers the precarious work and living conditions which many immigrants endure, like the conditions of many oficinas in which a great number of Bolivian immigrants in São Paulo work (Kempfer and Martins, 2013). Considering that many refugees come from countries at war or in armed conflict, such as Syria and the Democratic Republic of Congo, the chances of these migrants having physical and/or psychiatric impairments due to violence or trauma increase (Galina et al., 2017).

Around the world, studies that address this intersection of immigration and disability in healthcare are scarce (Mirza et al., 2014). There are none about this intersection in Brazil. Those developed in other countries focused mainly on issues of cost and frequency of use of healthcare services by immigrants with disabilities compared to citizens with disabilities (Tarraf et al., 2016; Glaesmer et al., 2011); or legal issues regarding the denial of entry, services and/or documentation for immigrants with disabilities because of potential healthcare costs (Penner, 2012; Soldatic, 2012). In their review of work on undocumented immigrants' healthcare access in Canada, Magalhães et al. (2010) found that difficulties in accessing social housing, transportation and healthcare were augmented for undocumented immigrants with disabilities due to issues with immigration status/ documentation and linguistic barriers. In their work with Iranian immigrants with disabilities in Belgium, Albrecht et al. (2009) showed how disabled Iranians were culturally marginalized and were consistently discriminated against in terms of citizenship, education, jobs and general acceptance.

The studies that touched on the aforementioned topics were primarily carried out in the United States, Canada, Australia and Western Europe, countries and regions that have different political, economic, social and cultural climates than those of Brazil. The compositions of immigrant populations and people with disabilities are also different. 7

Theories in Anthropology have influenced the public discourse on disability by focusing on cultural understandings of disability (Kasnitz & Shuttleworth, 2001; Cascio, 2015). As shown by multiple studies, the understandings and treatments of disability are culturally produced and diverse cultures conceive of disability in different ways (Phillips, 2009; Peters, 2000; Ginsburg & Rapp, 2020). Cultural conceptions of disability have profoundly affected the treatment of people with disabilities over time (Cervinková, 1996; Schweik, 2009). It is important to note that immigrants with disabilities and their family members may navigate multiple cultural perceptions and treatments of disability, those of their community of origin and those of their new residence (Albrecht et al., 2008). These different cultural understandings and treatments of both disability and medicine affect how individuals with disabilities and their family members navigate, interpret and use services as well as how they are treated and perceived in accessing or attempting to access medical services. Qualitative research on the navigation of the multiple cultural conceptions of disability in immigrant populations provide valuable insight into promoting inclusion of people with disabilities in diverse communities and their access to healthcare. Studies of deaf culture and activism in Brazil like those of de Brito and Prieto (2018) and Assensio (2015) or the work of Ortega (2008) on the neurodiversity movement could aid in academic studies about immigrant diaspora culture formation, as well as inform activism for access in diverse spaces. Anthropological studies on disability from other regions of the Global South, like those of Whyte (2020) in Uganda and Friedner (2020) in India, could inform different approaches to relationships and barriers faced in contexts of extreme social disparity, imperialism, globalization and South-South migration.

The theory of intersectionality, initiated in gender studies, frames forms of oppression that intersect as causes of disparities in health and healthcare (Kelly, 2009). The original argument of intersectionality is that the total effects of multiple forms of marginalization multiply and do not just add to levels of oppression (Collins, 1980). Intersectionality allows for advances in the knowledge of the dynamics and interdependence of social relations and in the struggle against multiple and conjugated forms of oppression (Hirata, 2014). According to Garland-Thomson (2002), integrating disability analysis in feminist theory does not restrict focus to women with disabilities, the intermixture of foci stimulates a dynamic and nuanced conversation. Considering disability alters the conceptual framework to bolster our comprehension of how different systems redefine, connect and mutually constitute each other. Including disability in the analysis of immigrant healthcare experiences does not delimit the analysis to only immigrants with disabilities, but rather it expands the discussion.

Gazard et al. (2015) affirmed the importance of investigating how migration combines with other identifying characteristics and social factors to affect health services and healthcare outcomes. In their research, conducted in the United Kingdom, healthcare outcomes changed when they intersected migrant status with the ethnicity of immigrants. In the study, black immigrants were more likely to report poor health conditions than non-migrants; but when they asked the same questions for the general immigrant population, they reported a better state of health than the nonimmigrant population. The authors concluded that this was probably because UK citizens were less open to non-white immigration and consequently, black immigrants faced racism and xenophobia, showing that discrimination may have an effect on healthcare outcomes, especially in the case of immigrants. Warner and Brown (2011) argue that intersectional studies on health disparities for people with disabilities are indispensable as their study of the trajectories of disabled black women concluded that racial disparities in disabled people are gendered.

Angela, Noelia and Elisabeth

Immigrants often encounter logistical, cultural, linguistic, racist, xenophobic and socioeconomic barriers to accessing healthcare services. Disabled immigrants may face all the barriers that other immigrants endure in conjunction with the physical, architectural and attitudinal barriers suffered by those with disabilities, multiplying the hurdles confronted by individuals in this group. Two of the PI's formal interlocutors could speak to said barriers faced by immigrants with disabilities in Brazil, Angela and Noelia.

Angela is from the city of La Paz (the urban capital of Bolivia). Due to the socioeconomic conditions faced by her family as a child, she was forced to stop attending school and find informal work at twelve years old. She became pregnant with her first child at sixteen years old and was married at seventeen. After enduring an abusive marriage for years, Angela divorced and saw migration to Brazil to work and live in an informal oficina as a stepping stone to achieve financial independence from her ex-husband. While she had to leave her two sons in Bolivia with their father, in a few years, she saved enough money to pay for legal immigration documentation and a work permit to find formal employment in a formal registered oficina with a fixed salary and social security benefits. With money saved, she was able to rent a room of her own in a house in the center of São Paulo and bring her sons to live in the city with her. Her eldest son left Brazil after only a year in the country because he did not feel like he fit in and he missed his life in Bolivia. After two years in Brazil, Angela's youngest son, at sixteen years old, left her home to work in a clandestine oficina in the northern zone of São Paulo to earn his own income. Two years later, she was still working in the same formal sweat shop and rented a room in a house she shared with two other Bolivian immigrant women in Central São Paulo. She began to have issues with irregular vaginal discharge and heavy menstruation and sought answers at her UBS. After waiting for several months for gynecological exams and consultations in the SUS, she utilized her limited income for private medical testing services. The private gynecologist she consulted relayed that tests found irregular cells, but further private diagnostic services would be too costly for Angela. The doctor gave her a referral card urging the reception at her UBS to expedite further testing for her.

The PI met Angela while volunteering as an interpreter and healthcare educator for a free monthly immigrant health clinic in the center of São Paulo. The healthcare clinic was run by a Bolivian immigrant-run organization and Angela wanted to speak with a doctor in Spanish to receive help understanding the expedited medical exam result that she received from the SUS that was in Portuguese. She had been diagnosed with advanced uterine cancer, but she had been waiting for an appointment with an oncologist to begin treatment in the SUS for over a month. Due to heavy hemorrhages, she was often unable to walk short distances without feeling faint. Upon diagnosis, she was given disability status to receive social security funds but due to linguistic barriers and confusion about paperwork, she had not been able to apply and therefore was without any income. Soon after she began treatment, her then eighteen-year-old son moved into her home again to assist her during treatment. He was not, however, able to accompany her during most medical appointments because he continued to work long hours in an informal oficina near her home. Angela requested that the PI escort her in many of her consultations and treatments to serve as a Spanish-Portuguese interpreter and to provide company for her during long periods in waiting rooms. The PI accompanied Angela throughout her cancer treatment as an interpreter and also assisted her in attaining social security funds.

Our other interlocutor, Noelia, like Angela, is from La Paz, Bolivia. She had been in Brazil with her husband, Ignacio, her twenty-one-year-old son, and her eighteen-year-old daughter, Elisabeth, for a little less than a year. Ignacio had migrated to Brazil seven years before the rest of his family and sent money to Noelia in Bolivia to care for their children. When Noelia and her children migrated to Brazil, they moved to live with Ignacio in her brother's informal oficina. Her son went to work in another informal oficina and Ignacio worked in Noelia's brother's oficina. In order to care for Elisabeth during the day, Noelia normally woke up every weekday at 3:00 am to sell women's clothing made in the family oficina at a clandestine dawn flea market in Central São Paulo. After working at the flea market, Noelia would arrive home by 10:30 am to be with Elisabeth. Elisabeth has limited mobility in her arms and legs and walks with assistance inside her home. She is pushed in a used manual wheelchair when outside of the home. She has a speech impairment and after medical testing in Brazil, she was diagnosed with a hearing impairment as well. She spends most of her days in the home above her uncle's oficina with Noelia. Elisabeth does not have any regular outside activities. She enjoys watching television and is very active on social media, chatting with family and friends she left in Bolivia.

The PI met Noelia through a Bolivian immigrant contact of hers who knew that she worked with immigrants and healthcare access and thought she might be able to help Noelia's family. 8 Noelia and her family had not yet accessed any healthcare services. Elisabeth needed non-emergency specialized medical attention because she was losing her hearing and mobility. A community healthcare agent had been to their home but scheduled her first routine appointment at her UBS for seven months later. Without an initial consultation at the UBS, Elisabeth would not be able to get referrals for specialists like speech therapists and physical therapists through the SUS. Noelia, Elisabeth's primary caregiver, does not speak Portuguese and was therefore unable to explain the necessity for an earlier appointment to the healthcare agent. The PI found a contact for their UBS and was able to arrange an appointment for Elisabeth soon after her first meeting with the family. Once the family gained access to their UBS, the PI accompanied them during a number of medical consultations and served as a Spanish-Portuguese interpreter.

Both Angela and Elisabeth faced barriers to healthcare access because of their status as disabled immigrants. In one instance the PI was present while Noelia and Elisabeth faced xenophobia while trying to attain assistive technology for Elisabeth.

While the PI accompanied Noelia and Elisabeth during an appointment to fit Elisabeth for a hearing aid, the doctor asked her where Elisabeth and Noelia were from as she was acting as a Spanish-Portuguese interpreter for them. She translated the question to Noelia, who replied that they were from Bolivia. Shortly after, he asked when Noelia and Elisabeth were going to return to Bolivia. When the PI translated the question for Noelia, she responded that they live in São Paulo. The doctor looked at the PI and said, "You know that many of them come here, get these expensive devices, and then go back to their country. That's how it is. That's how they are." (Emphasis by the authors.) Noelia insisted to the doctor again, that she and Elisabeth live in São Paulo.

While immigrants have the right to health care in Brazil, the consequences of their social stigmatization, their often-precarious living conditions, and the climate of fear and mistrust generated by restrictive immigration policies in practice prevent many from having or feeling entitled to this right. The climate of fear and mistrust ingrains institutional actors' perceptions of immigrants and their evaluation of whether they morally deserve healthcare resources to which they are legally entitled. In other words, a combination of intangible social factors (xenophobia/ racism; bureaucratic obstacles; restrictive and/ or confusing immigration policies; and immigration status-related precariousness, fear and suspicion) interact to affect individuals' health status and create psychological distress. Intangible factors like fear and suspicion have powerful effects that influence the way many immigrants and healthcare providers think about "deservingness", producing migrant subjects who feel submissive and non-migrant subjects who judge immigrants as undeserving (Larchanché, 2012). Public healthcare service provision and the promotion of accessibility for immigrants with disabilities like Elisabeth, is further compromised by individual and societal notions of deservedness that rely on neoliberal logics of productivity to determine the rights of individuals (Soldatic & Pini, 2009; Hartblay, 2014).

Angela revealed the powerlessness she felt as a disabled immigrant accessing healthcare services, "Sometimes, we immigrants are very quiet. At times, I feel silenced and if I'm told something, I just accept it. I can't ask any other questions."

Noelia explained, "Sometimes, we, (immigrants) because we are foreigners…. Because we believe we don't have rights, we just don't ask."

Throughout her treatment, Angela often stated that she wouldn't have known free cancer treatment was an option in the SUS for her as an immigrant if the private gynecologist had not informed her. Immigrants, their family members and caregivers often are not informed or aware if they have or do not have rights to healthcare or specific services.

Noelia explained, because they live close to the UBS, it is easy for her to arrive there with Elisabeth by walking her over in her wheelchair; however, getting to specialists' offices is complicated due to transportation accessibility.

"Many times, we have to take an Uber (a third-party ride-sharing service). Often when I go to the speech therapist, because of her ears, for example… Ay, sadly, I have to go by Uber to arrive on time and everything… I have no idea how much I've spent. I wouldn't be able to arrive there walking to the metro and the bus. It's impossible to get the wheelchair in there. It's like that, transportation affects us a lot." - Noelia

In order to arrive at the hospital where Angela accessed treatment, she often had to contract a ride-sharing service as well. Angela explained, "…in winter, when there was really cold weather, or I was going to be late or I couldn't walk because I lacked the strength, I took an Uber."

Transportation access issues faced by many people with disabilities are at times augmented for immigrants like Angela and Noelia's family because, since migrating, they have a limited social network in São Paulo. Noelia explained that they do not have friends or family, as they did in Bolivia, who are able to give them rides to their appointments. Angela often talked about the financial strain she endured when paying for private transportation, especially before she had access to her social security funds. Noelia also has limited income as her husband works in a low-paying oficina and she sells the clothes made in the oficina in the dawn flea market. Elisabeth missed two appointments with the speech therapist due to transportation issues in 2018 and was in danger of losing her slot for speech therapy in the SUS as individuals lose access if they miss three appointments in a year.

One of the main anxieties expressed by both Noelia and Angela had to do with linguistic barriers. Due to the fact that both Noelia and Elisabeth do not speak Portuguese and because they are unfamiliar with the health system, Noelia often expressed fear about appointments when the PI was unable to accompany them on medical consultations. Noelia said, "It's complicated because in Spanish she (Elisabeth) has difficulties, so just imagine in Portuguese."

The PI witnessed doctors not talking to Angela about her treatment and state of health in consultations, but rather conversing with each other and only giving Angela papers to hand into the reception where she would be informed about the date and time of her next appointment. Angela said this was a common occurrence and it was frightening when multiple doctors would examine her genitals without introducing themselves and they did not inform her about what they were doing or what the results of the physical exams were.

"I felt like it was the end for me. They came, and as I said, I don't speak Portuguese well, correctly. So someone would come, another doctor as well, and they would talk just to each other and I would feel nervous. I would tell myself 'Oh, no, this must be the end for me.' Could it be that my illness had gotten worse and worse? Because they looked at me, they examined me, another doctor came and examined me more." -Angela

In one appointment, Angela requested that the PI ask about the side effects of a particular chemotherapy that was part of her treatment. The doctor said she didn't inform Angela about the drug before because she believed Angela wouldn't understand her Portuguese anyways.

Linguistic issues also delayed Angela's ability to access social security funds. At the registered oficina she worked at before her diagnosis, she was told to make an appointment at the INSS, the National Institute for Social Security (Instituto Nacional do Seguro Social). However, to make an appointment, there was an automated phone service that was only provided in Portuguese. According to a contact of the PI at the INSS, there is no protocol for serving non-Portuguese speakers. With help from the aforementioned contact at the INSS, the PI made an appointment for Angela and helped her sort out her documentation necessary to apply for funds. By the time Angela was officially able to access her checks, she had been out of work for nearly five months and her main financial support was from her youngest son. 9

In the process of requesting her Social Security checks, Angela mentioned how she was nervous about how she would be treated in the office. She said because she "looks Bolivian" with indigenous features and a conventionally small stature, she felt that people stared at her and knew she wasn't Brazilian. She didn't want to be rejected based on the fact that she is not from Brazil. She said she had previous experiences with racism and xenophobia. When the PI said that she had the right to receive her Social Security benefits, Angela responded, "I know that, but I don't think most others know that. Understand?"

As noted by previously mentioned Brazilian studies about healthcare access for people with disabilities, Noelia affirmed a lack of physical access to medical facilities.

"Some offices are uncomfortable… In a few, it's difficult to get into with the wheel chair. To get into the bathroom, sometimes the door is right there and I don't know how I can get in there, let alone the chair. I have to leave it outside." -Noelia

Both Noelia and Angela attested that wait times for appointments were hurdles for access to healthcare for them. Angela believes that a delay in being able to make an appointment with a gynecologist at her neighborhood health post allowed for her cancer to advance and was one of the causes of her impairments. According to Angela, "Illness doesn't wait for a time slot or for the doctor to see you."

Noelia expressed frustration and confusion at the amount of official national, state and city holidays in São Paulo as compared to the number of holidays in Bolivia, and how that often affects the consistency of speech therapy consultations for Elisabeth and the possibility for her to make and keep medical appointments and complete other tasks. She explained that because she isn't from São Paulo, she is often unaware or uninformed about holidays and if services will be cancelled or not. She has paid for an Uber and arrived for regular appointments only to discover it is a holiday and medical offices are closed.

Noelia mentioned how she appreciated that Brazilians in São Paulo seemed to take more care than Bolivians to prioritize the attendance of people with disabilities. However, she also charged that she wished there were more natural/ alternative healthcare options for Elisabeth and the rest of the family that she feels are more common and culturally accepted in Bolivia. As indicated previously, anthropological approaches could help elucidate how immigrants navigate multiple cultural conceptions of disability (as well as health, illness and the body).

As noted in studies on immigrants in São Paulo, UBSs are an important point of contact and inclusion for the group in Brazilian society. The SUS has served as a gateway to other services and greater inclusion for Elisabeth. Medical consultations, at this point, are some of the rare occasions that Noelia takes Elisabeth out of their home. Due to long work hours and without outside activities, they spend most days inside the home they live in above their extended family's oficina. With the help of the professionals in speech therapy and the social worker at their UBS, they searched for a public school and transportation to and from that would facilitate the inclusion of Elisabeth, granting opportunities for social interaction outside of the home and for her to advance in formal education with the goal of job training. Elisabeth expressed multiple times to the PI that she wants a job and to make friends in São Paulo.

Analysis and Conclusions

As academic inquiry in Brazil increases its focus on migration, intersectional studies including specific populations like people with disabilities must be executed in order to promote accessibility in different and broad cases. The experiences of the interlocutors of this study in healthcare demonstrate how, as immigrants, the barriers to access to healthcare are multiplied due to a lack of accommodations for Elisabeth and Angela's impairments; and/or how as people with disabilities, their access to and quality of healthcare are further compromised due to their circumstances as immigrants. Our interlocutors encountered physical barriers, architectural barriers, linguistic barriers, cultural barriers, and attitudinal barriers of racism, xenophobia and ableism.

People with disabilities are often labeled ''the Other,'' separate from people who are not classified as disabled (Okuyama, 2017). This is similar to the "otherness" imposed upon immigrant populations, especially immigrants of color. While the ''otherness'' of disability is often perceived as unique, because anyone may become disabled at any time (McDermott and Varenne, 1995), the same holds true regarding immigration status (Johnson, et al., 2004). At any point, one may be forced or choose to emigrate from their home country. According to Jensen (2011), othering is the process by which dominant groups define subordinate groups in reductionist ways, which ascribe lesser and/or problematic characteristics to said subordinate groups. The discursive processes of othering assert the superiority and authority of the powerful and affect the identity formation of "the othered."

Othering in the healthcare setting can limit how, when and why healthcare professionals are willing or able to remove barriers and make changes to processes, services or spaces to accommodate those that are othered, therefore lesser, as they are not a part of the dominant group and can be seen as less deserving or undeserving of services or accommodation (Alden, 2012). As "others", immigrants and people with disabilities both experience precarious citizenships, especially in neoliberal societies focusing on individualism and productivity (Biehl, 2005; Ong, 2006; Galvez, 2011). Othering, as it affects the identity formation of "the other", also affects the will or ability of said individuals to demand the rights and services that they are guaranteed by law, as exemplified in aforementioned international and domestic studies and in the cases of Angela and Noelia and Elisabeth.

As the new immigration law of 2016 faces public scrutiny and Brazil has formally left the United Nations pact on immigration, the rights and well-being of immigrants in the country are threatened (Maia, 2018; McNaughton, 2019). Accessibility in local communities and employment for people with disabilities are vulnerable as the federal government seeks to do away with job quotas for disabled individuals (Brigatti, 2019). The federal government also reduced the health support program for people with disabilities by 70% between 2019 and 2020 (Ferreira, 2020). With federal cuts to the SUS, accessibility to healthcare for all, especially people with disabilities and immigrants, is vulnerable (Vargas & Fernandes, 2020). The study of the intersection of disability and immigration with healthcare offers a space to analyze methods of promoting healthcare accessibility in broader, more universal ways and is vital in the current political and cultural climate in Brazil.

Acknowledgements

This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brasil (CAPES) - Finance Code 001.

References

Endnotes

  1. All names used in this study are pseudonyms and all interviews were conducted in Spanish. The project received approval from the CEP (Comitê de ética em Pesquisa), the Brazilian academic equivalent of the IRB in March of 2017 and the project number is 62550316.8.0000.5505. The primary investigator received funding for this project from CAPES (A Coordenação de Aperfeiçoamento de Pessoal do Nível Superior).
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  2. Some reasons Interlocutors reported for remaining undocumented were a lack of time to go through the process due to long work hours; the high costs of processing their documentation; and not having information on how to go through the process. Many feared high fines after not filing their documentation within 90 days of arrival (as required by the federal police). A few women said that the owners of the sweatshops that they worked at had lied to them and said that they were unable to attain legal documentation. This left them vulnerable to further exploitation as the sweatshop owners would threaten reporting them and having them deported if the women did not do as they were told.
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  3. In the PI's work with Bolivian immigrant women, for immigrants living in shanty towns (favelas), the requirement of a proof of residency was a barrier to enrollment in the SUS. In a municipality in the greater São Paulo area, for immigrants living in favelas to get the SUS ID card, they had to have contact with a church that worked directly with the city's Secretary of Health. Only the favela resident immigrants who associated with the church's social service workers were able to sign up through this list.
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  4. The RNM or Registro Nacional Migratório is a personal identity document that is required for foreign-born individuals living temporarily or permanently in Brazil.
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  5. Community health agents work in preventative medicine, health promotion, health education and community mobilization by informing community members about and directing them to existing public healthcare services and instructing them on how to use said services. They do this in delimited territories and register and accompany patients through domiciliary, collective and individual visits. They play an important role in the Family Healthcare Strategy as they act as the link between the community and the rest of the family healthcare team (Santana et al., 2009).
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  6. Oficinas are small garment factories (sweatshops) where most workers also live with their families and others. In São Paulo, workers primarily machine-sew precut fabric. Workers are usually paid per-piece-sewn and most oficina work is informal. In recent years, oficinas have gained fame because several were fined and/ or closed, charged with having labor and living conditions analogous to slavery (Schreiber, 2015; Lazzeri, 2020).
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  7. Immigration in Brazil is mainly from the south-south axis, as most of the immigrants in Brazil are from countries in the Global South. In the Global North, the immigrant population tends to come from the Global South (Baeninger et al., 2018).
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  8. The authors affirm that they understand that the use of Noelia's testimony is limited in that she does not have a disability and ideally, in the context of this article, the words of her daughter, Elisabeth, who has cerebral palsy, would be included. However, the ethnographic research this stems from worked specifically with Bolivian immigrant mothers and the author only had permission from the CEP, Comitê de Ética em Pesquisa (the Brazilian equivalent of the IRB), to interview Noelia. The purpose of this article is to highlight the dearth in research on this particular intersection of disability and immigration in Brazil and call for further investigation. Noelia could speak to some of the barriers that Elisabeth faced is attaining healthcare as her primary caregiver, and the PI witnessed problems Elisabeth encountered in accompanying her and Noelia in healthcare consultations. The authors stress the necessity for research specifically focused on the words and experiences of disabled immigrants, ideally conducted by disabled immigrants themselves.
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  9. It is important to note that Angela was one of two Bolivian immigrant women in São Paulo out of 17 formally interviewed that would have been able to apply for social security checks. The vast majority of participants did not have formal work and instead worked in clandestine oficinas. This is another precarity faced by immigrants with disabilities either temporary or permanent; they often do not have access to formal social security benefits and lose their ability to receive income. Immigrants must be legally documented to apply for a work permit and according to interlocutors of the study, both processes are costly for individuals who often earn less than minimum wage. Even with a work permit, formal employment with social security benefits is not guaranteed and is decreasing in Brazil (Silveira, 2019).
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