O tema das moradias assistidas é recente tanto nos debates públicos quanto na legislação brasileira. Com um trabalho etnográfico realizado na cidade de Porto Alegre, Rio Grande do Sul, junto a mães de adultos com deficiência cognitiva que se organizaram enquanto um movimento que luta pela causa das moradias assistidas, proponho, neste trabalho, uma reflexão sobre deficiência e práticas de cuidado que parta de suas práticas e discursos. Afinal, ao buscar arranjos outros que não junto ao seio familiar, essas mulheres trazem a tona e são submetidas a julgamentos que muito dizem sobre a experiência da deficiência. Foco, portanto, minha análise nas tensões, controvérsias e acusações morais que permeiam este pleito para, com isto, chamar atenção para os modos como suas trajetórias são perpassadas por regimes em que tanto a deficiência quanto os trabalhos do cuidado são desvalorizados. Argumento, por fim, que discussões que versam sobre a promoção de direitos, autonomia e independência das pessoas com deficiência devem vir acompanhadas de uma reflexão acerca da experiência das cuidadoras, em especial das mães. Uma experiência que permite uma melhor compreensão dos modos pelos quais a deficiência cognitiva é lidada em, na e pela nossa sociedade.
In this article, we reflect on the care practices and relationships that contribute to the well-being of people with intellectual disabilities, living in a poor neighbourhood of Porto Alegre (Brazil), in a context of incipient public policies for this population. Through the ethnographic description of the experience of three women from who are responsible for adult relatives with what they call ‘head troubles’, we aim to illustrate the gender, generation, class and ethnicity peculiarities of their trajectories. We consider that taking stock of the various dynamics at play in situations of care, as well as the interaction of the family, neighbourhood, and public resources available to deal with such challenges, is a fundamental step for forging efficient policies adjusted to the complexities of the contemporary context.
We met with Eva Feder Kittay in an afternoon of December at a café in New York City where she generously spoke for almost two hours about her work on the Ethics of Care and Disability, and her experience as Sesha's mother. A recently retired Professor of Philosophy from Stony Brook University, in New York, Kittay is a leading figure in feminist philosophy and philosophy of disability and has also made a substantial contribution to the fields of social and political theory and ethics. Along with other feminist theorists such as Joan Tronto and Virginia Held, Kittay was one of the pioneers in proposing an alternative ethical theory centered not on normative, general, universal principles of justice, but on interpersonal relationships, responsiveness to specific needs, and relationships of dependence and interdependence. An Ethics of Care. Her work as a philosopher is intertwined with her trajectory as Sesha's mother and she has built her career in a way that is not common within the discipline of philosophy: writing from one's own personal life.She was also a pioneer in bringing matters of care and disability -with special attention to cognitive disability -into philosophy. In 1999 she published the groundbreaking book Love's Labor: Essays on Women, Equality and Dependency (Eva KITTAY, 1999). In this collection of essays, she presented a feminist critique of John Rawls' theory of justice and formulated an alternative conception of equality that takes into account relationships of care, dependency, and the dependency workers. With that, she argued for the recognition of Care as a primary good. Moreover, she placed dependency, interdependency, and care in the center of the discussions on social justice. She also argues for a better distribution of dependency work, one that is not by gender, race or class, but through skills or inclination which requires the valorization of such labor. Since then, she has published over eighty papers, books and book chapters on issues of dependency, the relational self, the relationship of care and justice, asymmetry of relationships, social justice, politics of care, and disability.Kittay is also a prominent figure on Disability Studies. With a work grounded in an Ethics of Care, she has argued against philosophers and scholars who reduce the moral status of people with cognitive disability. With that, she addresses matters of the dignity of people with cognitive disability, personhood, justice, the role of care and of relationality, and also the guarantee of rights and access to health care for people with disabilities. She co-edited the book Cognitive Disability and its Challenge to Moral Philosophy (KITTAY; CARLSON, 2010) with Licia Carlson, and her new book Learning from My Daughter: The Value and Care of Disabled Minds (KITTAY, 2019) was published in April.
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.
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.
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