Distraction Free Reading

The Paradox of Autonomy and Care for Mothers of Adults with Disabilities in Brazil

Since the early 2000s, Brazil has experienced a significant change concerning the rights of people with disabilities in the country. Based on the struggles of the Brazilian Disability Rights Movements, in 2009 the country promulgated the UN Convention on the Rights of Persons with Disabilities (2006) and in 2015 enacted the Brazilian Inclusion Law, also known as the Statute of People with Disabilities. The promotion of autonomy and the social participation of people with disabilities is at the core of these legislations. While these measures are not always accompanied by policies that can actually guarantee their implementation, they still impact people with disabilities in the way they foster such discourses around autonomy and independence.

The centrality that notions of autonomy and independence have gained in the current legislation is also the result of a broader context in which, for the so-called modern individual, capacities to self-govern, make one’s own choices, be self-sufficient, and have self-control are seen as absolute values and constitutive of being a person. The association between autonomy and independence and personhood has been responsible for the segregation and violence against populations. Thus, it is not by chance that these values appear so strongly in the claims made by social movements and historically excluded groups. The importance of these concepts, however, should not make us think of them as self-evident categories. For some segments of the Social Movement of People with Disabilities in Brazil, independence means the possibility of making one’s own decisions and managing one’s life, while autonomy is having the control over one’s own body (Fietz and Mello 2018; Mello 2010). In the US Disability Rights Movement, on the other hand, autonomy is more linked to self-governance and independence to self-sufficiency (Winter 2003).

In my research with mothers of adults with intellectual disabilities in the south of Brazil, both terms appear as synonyms, used mainly by professionals in education and biomedical fields as almost a compound word (“independence and autonomy” or “autonomy and independence”). In this text, though, I show how the experiences of these mothers complicate understandings and lived realities of “autonomy and independence,” particularly in how these intersect with ideas and practices of (maternal) care.

Picture of “Paço da Prefeitura” taken from above. It focuses on the city hall building, built in 1901, the square and the water fountain in front of it. There are tall buildings around it. People are walking on the streets and there are several cars parked. The Guaíba River is spotted on the horizon.

Picture of Porto Alegre’s downtown, a neighborhood where many activities take place. Source: https://prefeitura.poa.br/gp/projetos/prefeitura-municipal-de-porto-alegre

The maternal figure and the production of autonomous individuals

My interlocutors are responsible for the care of their children with almost no state support, and until recently, they had heard little about this issue. In such a context, what was considered “good care” was much more about ensuring that the child had access to therapeutic and educational activities and survived in a world hostile to the specificities of disabilities. The new understandings on disability now call on these women to act as facilitators of promoting their adult children’s autonomy. As they embark on this new endeavor, these mothers are often accused of being overprotective or, on the contrary, neglecting their children. This demonstrates a paradox that makes it necessary for us to think critically about notions of autonomy and care, something that, I argue, becomes possible with the proposition of feminist scholars of science and technology studies to “think with care” (Puig de la Bellacasa 2017; Mol, Pols, and Moser 2010).

Over the six years that I have been conducting ethnographic research with these women, I have attended numerous talks promoted by the non-governmental organization that worked with their children. Educators, psychologists, and social workers were invited to speak with families about the importance of promoting “independence and autonomy.” In these moments, the professionals highlighted the risks that excessive care could cause, leading to unnecessary dependencies. To this end, they gave examples of how mothers should help their children to be as “independent and autonomous as possible.” They stressed the importance of mothers teaching their children how to dress and bathe on their own. They also pointed out the importance of motivating them to participate in as many activities as they wished so that their children could have a social life beyond the family and the home. In addition, mothers were told to allow their children to make their own decisions and teach them how to make decisions that do not jeopardize their well-being. This idea of “independence and autonomy” is similar to that presented by Pols, Althoff, and Bransen (2017), who, in their work with formal caregivers in the Netherlands, realized that caregivers understand autonomy and independence as a competence. According to the authors, teaching those they cared for to be more autonomous people was a central part of the caregivers’ work.

In my fieldsite, it becomes evident how professionals understand that it is up to them to teach mothers to ensure that their children acquire the competence of being independent and autonomous. But the maternal relationship differs from that of formal caregivers, not only because we are talking about a long-term relationship that occurs in different stages of life, but mainly because these caregiving mothers are constantly asked to demonstrate they are “capable mothers” and their ability to satisfactorily fulfill the maternal role assigned to them. While their children were growing up, mothers were held responsible for ensuring the development of their children’s skills, finding the right services, and fighting for their children to have access to what is guaranteed by law. But now, these mothers are interpolated by the recent discourses that impel them to be active subjects in promoting the autonomy and independence of their children. At the same time, similarly to what happens to people with disabilities, the mothers are also often represented as worthy of pity or compassion, as women who have been given a burden to be carried and whose lives marked by something perceived as a personal tragedy. On the other hand, they are also seen as “superwomen,” warriors who “overcome their children’s disability.” This conception is fueled by common-sense ableist assumptions that no one would like to have a child with a disability (Kafer 2013).

Autonomy in a wider context of infrastructures and care relations

The centrality of the maternal figure in the promotion of autonomy in such context makes it necessary to go beyond the alleged dichotomy between “excess of care” and “promotion of autonomy” that is often presented. This is what a perspective from feminist approaches to science and technology studies allows. First, such a perspective helps us see many associations that are commonly rendered invisible (Puig de la Bellacasa 2017), such as the lack of infrastructures of care in a context in which urban violence, inadequate public transportation, and the almost total absence of accessibility makes these women afraid to let their children go out unaccompanied. This makes it up to mothers being responsible to take their children out for leisure, therapeutic, and even work activities, often in detriment of their own activities. Second, this approach asks that we pay attention to practices, to the multiple ways that care is enacted in daily life. It asks that we take into account care’s contingent and situational character and that we consider what is at stake for the actors involved—that is, that we report on “the ‘goods’ that carers and patients [or, I add, those who are cared for] strive for, the values and norms they in- or explicitly shape, and the ‘bads’ they want to avoid” with a certain practice (Pols 2014, 83).

As their children’s primary caregivers, the mothers I worked with are constantly asked to make decisions about their children’s well-being, decisions sometimes made together, sometimes not. When making such choices, they need to consider the possible effects it will have on the lives of both, including the possibility of an outcome in which the need for care would be higher. All of this is speculative, based on their previous experiences, and on what they hear from relatives, friends, professionals, and the media in general. At all times these women are working on this “ongoing process of recreation of ‘as well as possible’ relations and therefore one that requires a speculative opening about what this ‘as well as possible involves’” (Puig de la Bellacasa 2017, 6). Thus, when we talk about care relationships, it is important to discuss them “in terms of relationships rather than individual autonomy” (Pols, Althoff, and Bransen 2017, 775).

If both care and disability are built on relationships that involve a range of positionalities, desires, and will constantly being negotiated, the same can be said for autonomy, since, when in a relationship, the autonomies of both parties must be respected and coordinated (Pols, Althoff, and Bransen 2017, 779). We are talking about the constant management of different autonomies and values that are at stake in care practices. Building a relationship with the person being cared for can be key for the work of care, and it brings with it different moralities regarding what it means to be a “good caregiver.” In the case of mothers, this is on top of the constant assessment of being a “good mother.” Just as the “goods” sought or protected in care relations are not universal or given in advance, in arrangements of autonomies, autonomy itself is not always the value being sought.

Thinking about the relationships that allow for arrangements of autonomy to be shaped in each situation is key for understanding autonomy as other than an absolute value since these different arrangements can be in conflict with each other. Since such arrangements shape care practices, one must also look closely to them to understand what is at stake for the actors involved in the practices and arrangements, what are their conditions of possibility, and what outcomes are been strived for in each situation (Mol 2009; Mol, Pols, and Moser 2010; Pols 2014). Take, for example, the case of Neiva, a woman from a poor neighborhood who is the primary caregiver for her son Brian, who is 25 years old. She understands it’s important that Brian has a social life apart from her family, that he can take part in the activities he enjoys and learn new skills. But with Brian’s talkativeness and mood swings, combined with an appearance that suggests he’s from a more peripheral neighborhood, she is afraid that if she doesn’t accompany him, he might be mistaken for someone who is on drugs and be arrested or beaten up. Thus, I argue that in the case of Brazilian mother caregivers, it’s important to pay attention to how the infrastructures of care and the different discourses on disability shape the mother-daughter/son relationship. Thinking critically about autonomy and care based on STS and feminist technoscience scholars allows me to question how the notion of autonomy put forward by the current legislation is mobilized in the daily lives of my interlocutors and move past the paradox presented here.

References

Fietz, Helena and Anahí Guedes de Mello. 2018. “A Multiplicidade do Cuidado na Experiência da Deficiência.” Revista Anthropológicas 29(2): 114-141.

Mello, Anahí Guedes de. 2016. “Deficiência, Incapacidade e Vulnerabilidade: Do Capacitismo ou a Preeminência Capacitista e Biomédica do Comitê de Ética em Pesquisa da UFSC.” Ciênc. Saúde Coletiva [online] 21(10): 3265-3276.

Pols, Jeannette. 2014. “Towards an Empirical Ethics in Care: Relations with Technologies in Health Care.” Medicine, Health Care and Philosophy 18(1): 81-88. https://doi.org/10.1007/s11019-014-9582-9

Pols, Jeannette, Brigitte Althoff, and Els Bransen. 2017. “The Limits of Autonomy: Ideals in Care for People with Learning Disabilities.” Medical Anthropology 36(8): 772-785.

Puig de la Bellacasa, Maria. 2017. Matters of Care: Speculative Ethics in More than Human Worlds. Minneapolis: University of Minnesota Press.

Mol, Annemarie. 2008. The Logic of Care: Health and the Problem of Patient Choice. New York: Routledge.

Mol, Annemarie, Ingunn Moser, and Jeannette Pols. 2010. “Care: Putting Practice into Theory.” In Care in Practice: On Tinkering in Clinics, Homes, and Farms, eds. Mol, A., I. Moser & J. Pols, pp. 7-25. Verlag Transcript.

Kafer, Alison. 2013. Feminist, Queer, Crip. Indianapolis: Indiana University Press.

Winter, Jerry Alan. 2003. “The Development of the Disability Rights Movement as a Social Problem Solver.” Disability Studies Quarterly 23(1): 33-62.

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