In the late 2000s, a network of agents started to promote the inclusion of people with disabilities into the Brazilian labor market, through an Affirmative Action Law that requires private companies to include from 2 to 5 % of people with disabilities among their employees. In this context, the experiences of people with autism brought to light theoretical and practical discussions on both the autonomy of these people and the 'best ways' of managing their everyday work routines. Perceiving public policies as producers of both subjects and social relations (Shore, 2010; Biehl & Petryna, 2013; Schuch, 2009), we aim to understand their effects in the management practices of different companies and in the citizenship-making processes (Ong, 2003) involving people with autism. Through ethnographic observation of the work environment in private companies, we highlight some 'Western' values implicit both in the public policies and in management technologies which may clash with the "logic of care" (Mol, 2008). By showing how Citizenship demands Care in this context, and how Care always demands a kind of human dependency, we shed light on the complexity of the notion of Care and aim to problematize the concept of Citizenship itself.
The present paper is the result of the authors' dialogue with research themes related to Human Rights and processes of citizenship construction (Ong, 2003) of people with disabilities, more specifically people with psychosocial and/or intellectual disability. Although we work with different aspects of the experience of disability1, one thing that both our research projects have in common is the centrality of the notions of care and autonomy in the understanding of the various constructions of citizenship regarding this population. These concerns will be illustrated in this article by analysing the experience of a young adult diagnosed within the autistic spectrum disorder and how he fared under the Brazilian policy of inclusion of people with disabilities in the labour market. It is this context that we aim to present and discuss.
We understand that "people with disabilities" are those with impairments of physical, intellectual or sensorial order that when in interaction with the many barriers imposed by society see their full participation and interaction with others obstructed (Shakespeare, 2014; Diniz, 2012). Recognizing the political and theoretical importance of the Social Model of Disability, we consider the initial differentiation between "disability" and "impairment" to be crucial to the development of the Disability Studies and to change the focus from the physical and biomedical aspects of the impairments to the social barriers and oppression experienced by people with disabilities. However, we understand that disability and impairment – or the social and the biological – are intertwined in people's experiences (Shakespeare, 2014).
Inspired by the contributions that feminist theorists brought to the Social Model, we aim to challenge the first approach that was focused on the removing of social barriers, bearing in mind that this is not always a possibility and that the dimension of the body cannot be taken for granted. We argue, therefore, that the notion of care is central to better understand the processes of citizenship construction through the inclusion of people with disabilities in the labour market.
Care is here understood as both a practice and a moral virtue (Mol, 2008). By this, we mean that, as a practice, care is something that is done – or not done – and as such it requires specific skills, expertise and techniques (Mol, 2008; Molinier, 2012). Thus, care can be understood as what Pascale Molinier (2010) calls an "adequate attitude" (attitude adéquate), an attentive response to one's needs and specific vulnerabilities. It is also important to say that – in accordance to the feminist theories of care – such an approach challenges the ideal of autonomy, since dependence and vulnerability are now perceived as common features to every human being.
In addition to a dialogue with disability studies and the feminist theories of care, we present here a perspective based on ethnographic fieldwork, on an immersion into everyday social interactions and on having people as the centre of the analysis that is in concert with current anthropological studies on public policies. Such studies focus mainly on the analyses of systems of thought in which policies are embedded, on its effects on people's lives and on the constructions of social relations and subjectivity of its agents (Shore, 2010; Ong, 2003, Biehl & Petryna, 2013, Schuch, 2009).
The intersection between public policies, work and disability through an anthropological perspective that prioritizes the dense observation of everyday practices also enables a critical analysis of the centrality of work in one's life. It sheds light on the fact that policies of inclusion are important actors as producers of citizenship since they bring to the fore questions such as: In what way is work a key element in the construction of one's identity as an adult, capable person? To what extent can working and having an income produce autonomy? And most importantly when or if autonomy as it is constructed is necessary and desired?
What we then propose is an anthropological analysis of the trajectory of Thomas2, a young adult diagnosed within the autistic spectrum disorder who at the age of twenty was integrated under the Brazilian policy of inclusion of people with disabilities into the labour market. It is important to say that for us Thomas's "case" is neither "exemplary" nor "representative" of a specific universe of people. By narrating his story, we don't intend, as Sidney Mintz does (1984: 55), to talk about "a history within a history". On the contrary, by following Thomas along the path he traced when searching for his inclusion in the labour market, we are inspired by, but not limited to, an ethnographic agenda (Biehl, 2005; 2008; Biehl & Petryna, 2013; Das, 2011) that attempts to perceive reality through the case of a single person and comprehend it in "experiments with life" (Das, 2007: 63).
We chose Thomas's "case" because his autism allows us to think about how such inclusion occurs in cases where the "disability" is not a visible one and when the diagnoses are ambiguous (Fitzgerald, 2015), "somewhat abstracted, unsourced" (Murray, 2008: 2) and located in the social interaction and the communication among people.
Perceiving public policies as producers of both subjects and social relations (Shore, 2010; Biehl & Petryna, 2013; Schuch, 2009)3, we aim to understand its effects in the companies' management practices and in the citizenship-making processes (Ong, 2003) of people with autism. By showing how in this context citizenship demands care, we shed light on the complexity of the notion of care in order to problematize the concepts of citizenship and autonomy. By bringing into light Thomas's experience we demonstrate how by ignoring important aspects of one's experience of disability the policy disregards many facets of inclusion in the labour market that, therefore, are not taken into consideration by its promoters and evaluators bringing not only ambiguous effects to Thomas's life but, to some extent making the policy itself unsustainable in the long run.
Citizenship, Public Policies and Work in Brazil
In Brazil, labour is considered a social right to be guaranteed by the State and its agents since the promulgation of the Federal Constitution of 1988. It was in that context of democratization with the government focusing on rebuilding citizenship rights after over two decades under a military dictatorship, that the Affirmative Action Law that requires private companies with more than one hundred employees to have from 2 to 5 % of people with disabilities in their workforce was passed in 1991 (Federal Law n.° 8.213). However, it was not implemented until 1999, when the decree n.° 3.298 was passed.
It was not until the late 2000s, when the government implemented intensive supervision of private companies, that a network of governmental agents, experts and educational institutions started working on an Inclusion Programme called Living Without Limits, whose actions in Porto Alegre4 were followed during our fieldwork. We will present here the trajectory of Thomas, a young adult diagnosed with autism whose routine we followed in both the theoretical course and inside the company as he was being trained to enter the labour market. We argue that his experience within the program allows us to problematize some "western" values implicit in the Public Policies – and its Political Science's notion of Citizenship – which may be clashing with the care practices required for/by people with autism in the labour market.
Citizenship here will not be taken as an objective fact through which those who are entitled to it become instantly part of a determined set of rules, duties and rights awarded to those who are considered a citizen of a country. It is, we argue, a project of subjetification (Ong, 2003), a social-cultural construction and the cumulative effect of technologies of government, here, as we mentioned before, understood as "the policies, programs, codes, and practices (unbounded by the concept of culture) that attempt to instill in citizen-subjects particular values (self-reliance, freedom, individualism, calculation, or flexibility) in a variety of domains. (Ong, 2003: 6).
In that sense, it is important to understand what is considered to be an "ideal or model citizen", which in the modern context is closely related to being an independent, self-sufficient, autonomous individual (Martin, 2007; Ong, 2003). In 'liberal societies' the ideas of dignity and human worth are equivalent to those of liberty and autonomy, and dependence became something to be avoided at all cost (Ferguson, 2013). Independence and autonomy, therefore, are in the centre of what constitutes the "ideal citizen".
The dichotomy established throughout the years between independence and dependence was constituted also and perhaps most importantly as a distinction between economic dependence and economic independence (Fraser & Gordon, 1994). Making money through one's own work – as opposed to being dependent on government benefits – can be considered the equivalent of being a "model citizen" since in this context "the worker tends to become the universal and social subject: everyone is expected to 'work' and to be 'self-sufficient'" (Fraser & Gordon, 1994: 324). Thus, in order to be an ideal citizen one must be included in the labour market. Thomas, who until the age of twenty lived off a social benefit and was never seen as a possible worker, was only integrated into the labour market when he entered the Living Without Limits program.
Meeting Thomas: Living Without Limits Program
At the age of 20, Thomas is a frail young man with dark-blond hair. We first met in October 2013 in a learning course for the inclusion of people with psychosocial and intellectual disability into the labour market. Thomas was one of the apprentice class's eleven students, all recruited by a local company at a local Psychosocial Care Centre (CAPS). The course is part of a state project called Pilot Project to Encourage Learning in Rio Grande do Sul5, started in 2009, which aims to capacitate people to fill the quotas established by the 8.213-91 Federal Law, and to enable their inclusion to take place after a period of theoretical activities in a vocational education institution followed by a period of practical qualification in private companies that adhere to the program.
Thomas, a beneficiary of a government cash benefit called Benefício de Prestação Continuada (BPC)6 as a "person with disability", is in the program's target group. Through this program, not only is he allowed to accumulate both his Benefit and his salary while being an apprentice at his new job, but he can also go back to receiving the BPC whenever he is laid off or decides to quit. This was an aspect seen as positive since it "encourages these people to let go of the Benefit's support to experience the usage of their capacity in a working situation" (Leme, 2015: 152).
During the ethnographic work, we followed for approximately two years Thomas's interactions with his teachers, his family, his co-workers, and the experts whom he had contact with along his trajectory. For six months we have attended, once a week, the vocational classes that Thomas participated in and have also observed, for another six months, his work routine in the administrative sector of a commerce and services company in Porto Alegre. While in the company, we conducted eight interviews with employees that work in the same sector as Thomas, his direct manager and the company's general manager. But our interaction with Thomas was not constrained to these professional environments as we also visited him in his house and neighbourhood several times.
Thomas is, according to the policy appraiser, "priority public to the government". He portrays the pragmatic and symbolic transformation of a specific group of people who 'depend' on social benefits into 'autonomous' and 'productive' citizens. His inclusion in the labour market was an "exemplary case" that, combined with statistical researches and inclusive development indicators, was chosen to be listened to during a meeting for the assessment of social programs of inclusion. His willingness to work, good adjustment to the company's schedule and ability to cope with the work demands were presented as a successful case. But there's more to his story.
From a student at the learning course to an apprentice at a big company
Thomas lives with his parents and his younger brother in a small house in a poor neighbourhood in the city of Porto Alegre. His mom, Joana, works two jobs – as a cleaner in various homes and as a clerk at a local bakery – in order to provide for her family. Thomas's dad, Pedro, used to work as a security guard at a nearby gas station, but after being diagnosed with depression he quit his job and is now a full time father, spending his days taking care of Ruan, the youngest of the two sons who was diagnosed with a more severe case of autism.
According to Joana, no one noticed anything different with Thomas when he was little. It was only after he started school that she could see a few differences between him and his peers, especially after he failed in school four times. After that he started to attend "special schools"7 but even in those he struggled to socialize with his peers and teachers. As he grew older, such difficulties became more apparent to the point that he did not want to go to school anymore since, as his mom states, "a boy like him loses friends when the teenage years start". Thomas sees himself as a "person with difficulties" what makes it harder for him to learn and to participate in some activities.
Neither he nor his mother recognize the diagnosis of autism, which was only given when she sought psychological counselling for both her children at a private clinic as courtesy of one of her employers who was a psychiatrist. There, after seven assessments, Thomas was diagnosed under the ICD-10 F42 and F84.98 codes. Having a "document with an ICD that was considered a disability" was necessary for Thomas to apply for the working program.
Thomas wanted to work. From the ages of eighteen, when he left school, to twenty, when he joined the apprenticeship program, he would spend his days at home doing nothing, his mom tells us. Even though he had always contributed to the family's income through his monthly benefit - the BPC - his dream, according to Joana, was to find a job, something he could achieve when he was selected to participate in the program.
There were eleven students from ages sixteen to twenty-five in Thomas's class at the learning course, all from poor neighbourhoods of Porto Alegre's northern area. During six months, the class engaged in various activities from basic math lessons to work communication and expression training. It was during one of these activities that we first encountered Thomas. The lesson was on how to search for things on the internet and as we walked through the classroom we saw him looking at images of fishes. After a long and detailed explanation on the species, the ideal environment and other interesting information on fishes and birds, it was obvious that Thomas had a great knowledge about animals. That was explained by Clara, one of the pedagogical professionals responsible for the course, as part of his diagnosis: "They are specific interests. He is autistic."
Thomas was very committed to the course and despite his difficulty in activities that require talking or communicating, he was chosen as "employee of the month" by the teachers more than once. When exposed in front of the classroom, Thomas was often nervous and confused. Those moments, however, were seen by the specialists as good practice for the work environment that he was about to face. As we were told by Clara, the psycho-pedagogical worker responsible for Thomas's class, "in businesses we should work the different competences of people with disabilities in different ways. Instead of developing their weaker aspects, we should focus on their strengths". To her, a person with autism can "practice social skills, but will always have a deficit in that area when compared to other people". That should be taken into consideration when dealing with them, and also when giving them work positions and attributions.
Once the course was finished, Thomas went on to his practical internship at a big local company that works with sales and service. The morning shift starts at eight-thirty so Thomas had to leave his house more than one hour earlier in order not to be late, which he did with his mother in the first week. Joana explained that once he has memorized a route she lets him go by himself.
The job assigned to him was to tag and numerically order the sales receipts, which he did perfectly throughout his internship. He would take the tag, check the number, search for its match in a spreadsheet and place it in the correct order. Then he would take another one and do the same thing, on and on, for the whole four hours of his morning shift. Mr Luis, an older and experienced worker in the company, was responsible for teaching Thomas when he first got there. According to the manager, that choice was made because Mr Luis is a patient and affectionate person and would be a good back up for the young apprentice.
Mr Luis said that people from management had told him to "keep an eye on Thomas" and "give him the easy tasks". He then chose to ask him to do the ordering and tagging of receipts, and, according to him, the young man was focused, responsible and learned his assignments very fast. The only problem, says Mr Luis, "is that every time Thomas finishes a set of labels, he remains quiet at his desk until someone comes and gives him more work to do. It is difficult for his co-workers to accept this since they are always busy and cannot keep track of what Thomas is doing all the time."
Even though he was good at his task and was considered a fast learner, he never moved on to doing something different, a situation that made him uncomfortable for not being able to learn new things. Mauricio, the stock manager, once told us that they "thought about placing him in the Mailing Sector to change things a bit, to see if he liked the new position better", but that once Thomas saw how tall the shelves were, he was "petrified". That was considered a danger for him and his co-workers since there were forklifts that drove around that area constantly and prevented him from changing sectors.
It took Thomas over a month to use the bathroom in the middle of his shift. He just could not work up the courage to cross the room in order to get to the toilet. In the first months, he would not eat the snack his mother prepared for him until someone asked him if he was hungry and told him he could take a break to eat. He had lunch at the company's cafeteria, which was something he claimed to like because he could eat for free. But despite enjoying it, he sat by himself at the same lunch table everyday as his colleagues observed him from a distance. That caused some discomfort to his co-workers who even mentioned it to Clara in one of her supervision visits. Her response was that unless someone asked him to sit with them every day, he would never have lunch with other people. And she added: "It is the company's duty to 'include' him in all spaces and situations inside the work space."
During the six months we observed Thomas's routine in the company, his personal relationships with his co-workers were a recurrent topic in our conversations. He would always gladly emphasize how someone different had said "hello" to him that day. One of his friends even helped him create an account in a social network and he was thrilled when his colleagues accepted his friend requests. And just as he was proud of making new friends, he seemed bothered by the fact that Kelly, the human resources manager, never said hello to him to the point of asking us one day if we thought "she was prejudiced towards 'people with difficulties'". "People with Difficulties" is the expression used by Thomas and his mother to refer to his specificity – the difficulty in learning, the reason why he is entitled to the benefit and why he was allowed to participate in the program. None of them recognize Thomas as being autistic.
Thomas's co-workers were never told what "his disability was". They were only informed that he had been hired through the affirmative action program and nothing else. As they were used to working with people with physical – and visible – disabilities, they seemed puzzled by what Thomas's diagnosis was. The fact that Thomas's co-workers were mostly concerned about his "type of disability" made us reflect on how private companies manage diversity in the work environment. Since the company did not inform the employees what Thomas's specificity was, how could they deal with it in a way that was not harmful for him?
When asked, one of Thomas's co-workers said his job performance was fine, but he had a problem connecting with people. According to the man, that was a problem because to be made permanent in the company one must be a "team player". Even Edson, the boy from the apprentice course who entered the company at the same time as Thomas, was making friends with the men at the storage section, which made Thomas's situation unique. But even against his colleagues' expectations, Thomas's goal was to be made permanent and in order to do so he put a lot of effort into following the rules with precision. He arrived exactly thirty minutes before time every day and did not miss a day of work in six months. Still, he did not seem to have the ideal profile to work in the company.
A 'case of success': from a challenging employee to the program's golden boy
It is a common strategy for companies to hire classes of apprentices with disabilities because the law allows them to hire trainees up to two years before formally hiring them, which exempts them from specific governmental taxes while still fulfilling the requirements imposed by the quotas legislation. During the time we observed Thomas' routine inside the company, we were also able to witnesses several phone calls of administrators that were frustrated with the fact that people with disabilities could not be fired for not showing up to work, or for discontent with their "low productivity". It was, we suspected, very unlikely for Thomas to be made permanent despite all his willingness and commitment.
At the end of his six month internship, Thomas and his mother were called at the HR office to be told he was hired. But it was a shock and a disappointment when Kelly, the HR manager, told them he could only be hired part time. The reason was that the company could not afford to have a person designated specifically to check on him for such a long period of time: "We do not have enough people to take care of him" – she said – "He can work here only from eight to noon, when Mr Luis is in the same room as Thomas and can help him with his duties". Joana was very upset with that remark and spoke loudly and clearly: "But he can do things by himself! You can ask him and you will see!" Thomas watched the whole thing in silence, sitting next to his mom. One could tell by his expression that he was worried he might not be hired because of the wages reduction.
The strategy of hiring the apprentices as part time employees is a frequent management technique because it allows the company to have two people with disabilities working four hours each in their payroll instead of one working eight hours, spending less money in salaries. For Thomas's family, however, it meant his wages would be half of the amount he used to receive from the government before he gave the BPC up to have a job. Nevertheless, his mother accepted the offer: "It is his dream to work, so he is going to!" she said.
About four weeks later, we joined Thomas and his mom in a meeting where agents from Brazil's Ministry of Social Development (MDS) were going to evaluate the Inclusion Program. Thomas was presented and talked about as a "case of success": after a year of theoretical and practical training, he was now an employee of a big business. And more than that, he was no longer dependent on the Social Benefit that he had been receiving for most of his life. Thomas had become a worker.
Discussion: on Citizenship, Work and Care
Citizenship through Labour
The struggle for Human Rights and citizenship has historically been a process of inclusion and exclusion, where different groups claim for their right to be consider, by legal, political and social spheres of a given society, both as a human being and as a citizen. As previously stated, following Aihwa Ong's (2003) proposal, we too view citizenship as a sociocultural construction and as the effect of several technologies of government. It is, therefore, a process in which a specific subject is produced according to specific characteristics of each society. There is, Ong (2003) argues, a model that is followed in such subject-making processes and, in the case of the United States of America, the "ideal citizen" is the person who embraces the values of productivity, efficiency, self-sufficiency, autonomy and independency from state's benefits and welfare (Ong, 2003). The same can be said for most "liberal societies" (Martin, 2007; Rose, 2008; Ferguson, 2013). In other words, it is to say that the "ideal citizen" can provide for oneself through one's own work (Fraser & Gordon, 1994). The ideas of work and citizenship are, through that perspective, closely connected.
In Brazil the ideals of work and citizenship have also been intertwined since, at least, the promulgation of the Federal Constitution of 1988. Also known as the "Citizen Constitution" it guaranteed the direct vote, a strong judicial system, social assistance and social, economic and political rights, as well as the right to work. It also established specific rights for people with disabilities, such as work protection against any type of discrimination; social assistance, aiming to guarantee living resources, rehabilitation and welfare benefit; education; accessibility and other norms of regulation (1988). The idea is so ingrained in Brazil that there are scholars who claim that being formally hired means to obtain a "passport to citizenship" (Garcia, 2011) or that having a formal job in Brazil "is what separates citizenship and charity" (Fagnani 2005 apud Garcia, 2011:70). It was under those premises that the Federal Law of Quotas for people with disabilities was passed.
It's possible to say that since 1988 one can see an increase in the legislation aimed to secure work for people with disabilities in Brazil. Through the years a series of public policies were implemented aiming to guarantee that the law was obeyed. The courses and lectures that Thomas participated in were all part of these policies. Through them he was not only having his citizenship guaranteed, as the policy makers claim, but he was also learning how to be a citizen. It is no surprise that the policies' main goal is, according to its managers, to promote citizenship.
There's no question that people with disabilities are entitled to have plain access to education, healthcare and work opportunities. In that sense, giving Thomas the opportunity to fulfil his dream of working and having an occupation outside his house is a big achievement for him and for society. But it is also important to say, as pointed out by Leme (2015), that the legislation that first implemented the quotas was addressing the issue of social security and one of its goals was to make private companies responsible for reintegrating people who lived on social benefits into the labour market. In a context of social inequality and a lack of efficiency in the public sectors such as we have in Brazil (Garcia, 2011) it is important to consider what the story presented as a 'case of success' by the policy makers does not show.
Having citizenship as the standard through which the success of the policy shall be measured often obliterates the reality of certain bodies which don't necessarily fit the idea of control, autonomy and self-restraint that it requires (Mol, 2008) and also of certain social contexts in which the benefit received was of great importance for a family's maintenance, as it was in Thomas's case. One cannot forget, for example, that Thomas's income – a substantial part of his family's provisions – was reduced in half by entering the labour market. If it is true that from the state's point of view Thomas is now more independent for not depending on a social benefit to provide for his means, one must take into consideration the social and economic context in which such "independence" takes shape. Can we consider Thomas's independence detached from his family's possibility of having a decent economical life? An ideal of citizenship which is defined as not being dependent on social benefits is harmful, if not unlikely, in social contexts like the Brazilian one.
In addition to the economic aspects, it was also the case that a big part of Thomas's theoretical training involved practices of normalizing a body that was not used to the requirements of a working environment. His classmates and he were taught what to wear so they did not stand out, not to speak too loudly and, it is to say, not to behave as if they were not in control of their minds and bodies while working. But as soon as he entered the company, his difference was perceived by his colleagues who, not being told that he was autistic, often speculated on why he behaved in a way that was not the standard for those who are used to the rules of employment. From his co-workers' perspective, Thomas did not mingle, did not put forth an effort to do team work, was not proactive enough and needed constant supervision. He did not fulfil, one could say, the part of the 'autonomous individual' his colleagues were used to working with.
This, however, should not be a problem for a program that aims for the inclusion of people with autism into the workplace as it is well recognized by the promoters of the policy that "autistics have difficulties in social relations and communication. They simply cannot have the initiative to do things by themselves, especially if it is a new task for them. That is why it's essential to them to have a fixed routine. They get 'disorganized' if things happen differently than they are used to", as stated by Clara the psycho-pedagogy professional. That's precisely why even once he was inside the company Clara still followed Thomas's performance and adjustment to the work place. The goal is to make it so that both the employer and the employee benefit from the experience.
In the context of the disability studies, it is a common sense that a disability is not an 'individual condition', but a 'social issue' that must be addressed as such. The barriers for the social inclusion of people with disabilities are imposed by the inability of society to deal with different ways of being in the world. In order to citizenship to be possible for all, society has to be physically and symbolically accessible to all. That seems to be accentuated in a competitive and profit-oriented environment such as the business world. Here is where the concept of care comes into play in order to better understand not only the policy's goals, but mainly its practices and effects.
Care in the work environment
There are many controversies involving the concept of care (Fine & Glendinning, 2005) among researchers of disability studies (Kroger, 2009; Shakespeare, 2014). Many specialists of this field of work reject the usage of such category for understanding that it has the connotation of an infantilized being that is incapable of making one's own decisions. As an alternative, they propose the terms help, support or assistance (Shakespeare, 2014; Kröeger, 2009). But we, on the other hand, argue that the concept of care can be of great importance in this debate. Our argument is that when we talk about the policies of social inclusion of people with disabilities, and, more specific, people with autism, Citizenship demands Care.
We agree with the ideas of the feminist thinkers that even when removed the social barriers, the relationship of care and dependence would still be a necessity (Kittay, 1999). In this regard, we follow, as stated before, Annemarie Mol's (2008) proposal to think of care as a practice that also has a moral character. It is to say that we are interested and attentive to the interactions and interventions it generates (Mol, 2008, Mol, Moser & Pols, 2010) and the specificities of such. Thus, dependence - as another facet of care relations - must be thought about as a common aspect of human life (Kittay, 1999) and faced not as a self-evident category, but as a social-historic construction.
A part of this is to accept the relations of dependence and the care practices that come with singular experiences. In the work place, for example, each specific case requires a specific initiative. An intervention that renders working possible for people with disabilities, whether it is the presence of another person – such as is Mr Luis in Thomas's experience – or a specific computer program, a different technology or special tools, is part of their inclusion in the work force.
In both the legislation and in the discourse of policy makers and people involved with the program, the concept of care is rarely used, being preferred by the term support. What is being said, however, is that for people with autism to be successfully included in the labour market there are specific relationships that are necessary, relationships that aim to provide the well-being of those who receive it. Well, that is exactly how we, inspired by Viviana Zelizer's (2011) proposition, understand the concept of care relations - as variable as they can be.
The resistance in speaking about care in the work environment derives from a long established division between the domestic and the market. While the public sphere of competitive markets embraced and demanded autonomous, independent, self-sufficient individuals, the realm of the private sphere was seen as a place that would accommodate those who could not compete in such vigorous environment. Care, needless to say, was exclusive to the latter (Dali & Lewis, 2000). But what it is not taken into account by this perspective is all the invisible work that is necessary for such individuals to strive. The care work behind the "cases of success" is precisely the activities that by adequately addressing one's specific needs, enables them to achieve autonomy and identity (Molinier, 2012). As stated by Molinier (2012: 253), "to be able to devote oneself to one's own interests requires a certain form of psychological availability, a form of detachment from the time constrains arising from bodily needs (…)". Of course, since such activities are often naturalized and made invisible by a system that does not value care activities, it is only when faced with modes of being that challenge the liberal ideal of autonomous individual that they become more apparent.
As Thomas's experience demonstrates, many care practices are necessary in order to grant his access to work. This is not a characteristic exclusive to those with disabilities, but when confronted with a work environment and a society that is not prepared for a subject who defies the expectation for the so-called "normality" the presence and absence of care is more visible. Thus, Thomas's trajectory allows us to reflect upon the need for care in a working situation.
Clara's work is one example of an explicit care practice. Her job is to visit the companies and teach managers how to deal with people with autism and to organize their work routine. Her main goal is to set things so that "the autistics can be as independent as possible". She was the one who convinced the manager that it was possible for Mr Luis to train Thomas into asking for more work once he was finished labelling. That way he would be seen as more productive. But of course, it did not make up for the fact that Mr Luis would have to check on him once in a while to make sure that everything was alright. Mr Luis was never asked if he wanted to be responsible for Thomas nor was he trained for that assignment. Thomas's fragilities and difficulties were never exposed as part of the "success" of his case, neither were they addressed or considered during the evaluation of the program. The manual and repetitive task he does, so much criticized by the theories of labour (Braverman, 1988; Gramsci, 2000), is not a matter of criticism for his 'case'. On the contrary, as the centrality and power of specialists' knowledge in our fieldwork demonstrated, they are considered the "ideal tasks" for his "kind of disability".
Although such difficulties might not always be present in the final picture of the policy, they have to be addressed on a daily basis by those who are involved. Under conditions that are not ideal, the companies juggle dealing with the multiple objects of care (Law, 2010) that the policy forces them to face. As Mr Luis has made clear he is at the same time dealing with: 1) caring for Thomas's well-being in the company – making sure that he is not in danger and that his task is a manageable one –, 2) his co-workers when he decides that Thomas is not fit to move to the storage sector, and 3) his own position in the company, which means he still has to be a productive and useful employee in the eyes of his managers. The policy's success depends on a number of people trying to work on that equation of fulfilling the law, not harming business, guaranteeing a safe and inclusive environment, a willingness to work and, more than that, the forgoing of a higher income just so that one can be a worker.
Our ethnographic work shows that if citizenship construction is indeed a process of subjectification, as we argue it is, then determining when people like Thomas feel like "a citizen" is a central aspect for us to understand the effects of the public policies. One can say that Thomas's empowerment, self-esteem, and happiness significantly grew throughout this process. Thomas now has work colleagues and a Facebook account where he interacts with friends and co-workers. He, as most of us, leaves the house every day to be a "worker", with all the symbolic meaning that this word represents in our society. Not only is Thomas seen as a productive citizen, he indeed feels like one. But such aspects – as important as they are – do not erase the criticism that the construction of the policy entails. One cannot forget that Thomas's family had a considerable economic setback once he was hired by the company or that he was included in a work environment that was neither supportive nor adequate.
What we hope to have demonstrated is that the success of such a policy of inclusion – which is an achievement and still necessary – depends on adequate attitudes, and on work that is relevant to this population's needs and specific vulnerabilities. Thomas's case can be seen as a successful one, but his personal achievements cannot disguise all losses he has suffered to enter the labour market - losses that could be minimized had the implementation of the policy been more attentive to people's social and economic contexts, as well as their realities and vulnerabilities.
The idea that citizenship demands care, as we argue here, derives precisely from the singularities of each experience that challenge the ideal of a self-sufficient subject who is in total control of its body and mind. In fact, citizenship always demands care, since it is the hidden and invisible work of care that enables productivity and creates the false idea of a subject that is completely independent from other human beings. With citizenship being so strongly attached to that of a productive, working subject, policy makers struggle to make their apprentices fit into this ideal. To think of citizenship as a process that not only allows but embraces dependence as a constitutive part of the subject and that understands that not everyone can fit into the model traced by those who envision a policy is key for the inclusion it proposes.
The benefits that the inclusion program brought to Thomas's life were many – as we hope to have made clear throughout this paper. Once entering the working world Thomas was seen as a productive individual in society, as someone who does not depend on social benefits to live. And he too felt better by having a job, leaving the house every day to go to work, making new friends and learning new things. However, this "case of success" – as his story is presented by the policy's managers – hides several issues that the program does not address nor has an answer for.
As soon as he became a worker his family's income was drastically reduced, since his part time salary is half of the benefit he used to receive. Asking a family who is already struggling to make a living to give up such a considerable amount of money every month so that the person with disability can join the labour market seems like a too big a sacrifice to ask. Besides that, the company where Thomas now works was not prepared for such a program. His co-workers were unaware of the situation and not knowing how to address him often avoided any social interaction with him. Also his managers seem to still look at him as a quota to be filled in order to avoid being fined by the government and not as an employee with peculiar characteristics and a potentially valuable employee. It is unlikely that Thomas will be assigned different tasks while he is in the company since training him for them may require abilities for which his managers and colleagues are not prepared.
Of course that does not mean that affirmative action shouldn't be promoted or that people with disabilities should not be encouraged to enter and guaranteed a place in the labour market. On the contrary, if being a citizen is also being a worker, one must recognize that for some people more than others some care practices are crucial to be able to enter the labour market. It is when we break away from that ideal controlled, passions tamed, and autonomous citizen (Mol, 2008) that we are able to see within the logic of care, a logic that embraces and cherishes the diversity of active bodies, who are often unfit and unruly (Mol et al, 2010).
It is in this sense that we argue that citizenship in our society – as closely attached to being a part of the labour market – depends on care work to gain form. Understanding care as this adequate responsiveness to specific situation, we propose that a program of inclusion that ignores specific needs and realities of those whom it intends to include is both incomplete and ineffective and therefore unsustainable in the long run.
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Helena Fietz focuses her work on the care practices involving the experience of families that deal, in their everyday life, with an adult who's autonomy can be considered limited due to an 'intellectual/psychosocial disability". She works under the supervision of Professor Dr. Claudia Fonseca and her Ph.D. research is funded by CAPES. Valéria Aydos' research is focused on the policies of social inclusion of people with disabilities in the labour market. She has been working under the supervision of Professor Dr. Patrice Schuch and her research is funded by CNPq. Valéria also worked under the supervision of Professor Dr. Nikolas Rose as a visiting scholar at King's College (funded by CAPES). This paper aims to create a dialogue between both researchers' findings through a presentation of Aydos's fieldwork.
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All names are fictitious.
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When we say the public policies are producers of social relations and subjects, we are following Michel Foucault's concept of "technologies of government". By that we mean, as Aihwa Ong (2003: 6) suggests, that "the policies, programs, codes, and practices (unbounded by the concept of culture) that attempt to instill in citizen-subjects particular values (self-reliance, freedom, individualism, calculation, or flexibility) in a variety of domains."
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Porto Alegre is the capital city of Rio Grande do Sul, the most southern State of Brazil with a population of about 1,510,000 people (2010).
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Projeto Piloto de Incentivo à Aprendizagem no Rio Grande do Sul. The Project is coordinated by the Superintêndencia Regional do Trabalho e Emprego do Estado (SRTE/RS). It is a State project that involves a vast network of partners.
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The BPC is an ongoing government cash benefit to people with disabilities and people that are 65 years-old or older that cannot provide for themselves. The beneficiaries of BPC are guaranteed to receive a monthly payment of the minimum wage for as long as they live. For more information on the BPC, see: http://www.mds.gov.br/assistenciasocial/beneficiosassistenciais/bpc.
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In Brazil, "Special Schools" are those where only people with disabilities are enrolled.
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ICD is the International Disease Classification and is widely used in Brazil to indicate a diagnosis for legal purposes. Thomas' diagnoses were the following: F42 – Obsessive- Compulsive Disorder and F84.9 – Pervasive Development Disorder, unspecified a common formal diagnosis for people in the Autism Spectrum in Brazil.
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