Espera, cuidado e deficiência: As produções do tempo na trajetória de mães de adultos com deficiência intelectual

Abstract

Resumo No Brasil, a centralidade do cuidado familiar faz com que a vida de mães de pessoas com deficiência seja marcada pela busca por serviços adequados para seus filhos. Com base em um trabalho de campo realizado junto a mães de adultos com deficiência intelectual da cidade de Porto Alegre, examinarei, a partir da trajetória de vida de uma de minhas interlocutoras, as dependências que se dão “ao longo do tempo” e suas transformações ao longo da vida. Com isso, busco compreender como o tempo do cuidado e o ‘tempo aleijado’ (Crip Time) atuam na conformação do cuidado familiar da pessoa com deficiência. Proponho, por fim, que o reconhecimento dessas temporalidades dissidentes é essencial para a valorização do trabalho do cuidado e da experiência da deficiência.

The Chronicity of Home-Making: Women Caregivers in Dis/Abling Spaces

“…(Pasveer et al, 2020, p. 20) Even across class differences, in Brazil, many families exhibit what can be conceptualized as a "culture" of co-living, with many generations dividing the same property (Peixoto & Luz, 2007;Salem, 2007;Velho, 2001). This culture inflects public policy, and many of the policies around care for children and disabled people revolve around the family and the home (Engel, 2013(Engel, , 2020Fietz, 2020;Fonseca, 2010). During its redemocratization process in the late 1980s, Brazil adopted a new national Constitution which established bases for public policies of social welfare, a universal public health care system and social assistance policies to address structural inequalities and reduce poverty.…”

“…There are also two federal conditional cash-transfer programs that support this family care model: Bolsa Família (Family Stipend) conditions a monthly stipend on a range of obligations to be assumed by the women who receive it, such as the guarantee that their children receive any medical care considered necessary and that they stay in school (Engel, 2013). The Benefício de Prestação Continuada (Continued Cash Benefit, or BPC) is a monthly stipend transferred to the elderly and disabled people who have a family income no higher than a quarter of a minimum monthly salary, again demonstrating that it is the family's responsibility to take on the costs of care for family members (Fietz, 2020). Finally, there are retirement pensions (aposentadorias) paid to elderly people who now receive care, and this money is often responsible for supporting the family, and the homemaking process.…”

“…This chronic process of "home-making" is nothing new, but it was intensified during this pandemic in its entanglements with ultraliberal politics. If, as one of our interlocutors said when speaking of the process of construction of an independent living facility where her disabled adult son could live, "living space [moradia] is infrastructure, and infrastructure takes time" (Fietz, 2020), then it is also true that, as infrastructures external to the home are made precarious or even extinguished, there emerges what we call "chronification of home-making" which itself intensifies the disablement of caregivers. In a sense, this engagement with home-making that debilitates poor women in Brazil is chronic.…”

“…In our respective fieldwork, we have noticed that home-making is itself an enactment of care and care infrastructure. A place of residence is something that is made; it is both temporal and temporary, and it depends on heterogeneous collectives that work constantly toward its construction without having the certainty that these efforts will lead to its concretization (Fietz, 2020;Pasveer et al, 2020). Our interlocutors engage in many efforts to "make home," that is, to compose spaces so that care is maintained in the best way possible, engaging objects, flows, and people in this effort.…”

“…"Chronic homework" was also exacerbated during the Covid-19 pandemic for caregivers who had already worked to build networks for their disabled family members outside of the home. In fact, many of the organizations that provide activities and services for adults with disabilities in Brazil, many of which are now run by the State or NGOs, have been founded by family members (Block & Cavalcanti, 2014;Fietz, 2020). Cultivating spaces where their children, spouse, or parent could find joy and making sure they could participate was part of the everyday care practices of most of our interlocutors.…”