ABSTRACT

Temporalities of care shape the lives of families raising children with Down syndrome in Jordan. As they age, parents grapple with the future’s uncertainties and often circle back to questions of marriage. Marriage is a key symbol of adulthood, shaping futures and actualities of care by distributing gendered and generational labor among kin. Over time, children with Down syndrome depart from the normative trajectories embedded in these kinship- and marriage-based systems of care, leaving them stuck. While parents worry about care futures, they and their grown children contend with constricting opportunities in the present.

中文翻译：

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约旦的亲属，连通性保健和残疾

抽象的

照护的时间决定着在约旦抚养唐氏综合症儿童的家庭的生活。随着年龄的增长，父母努力应对未来的不确定性，并常常回过头来讨论婚姻问题。婚姻是成年的关键标志，它通过在亲戚之间分配性别和世代劳动来塑造护理的未来和现状。随着时间的流逝，患有唐氏综合症的儿童偏离了这些基于亲属和婚姻的照护系统中所包含的规范轨迹，从而使他们陷入困境。尽管父母担心照料的未来，但他们和他们的成年子女目前都面临着越来越多的机会。