Ambivalent Inheritance: Down Syndrome and Kinship Futures in Jordan

Abstract

This dissertation traces the emergence of Down Syndrome in contemporary Jordan and explores how certain forms of embodied difference become disabling in different contexts. Down Syndrome is a relatively new idea in Jordan. Its dissemination and uptake are tied to burgeoning biomedical, therapeutic, and educational industries, as well as to the significant presence of human rights-focused organizations that operate locally and internationally. The emergence of Down Syndrome is also tied to growing disability communities that connect people around the world through Facebook, Instagram, and other social media platforms. This research explores how Down Syndrome fits into a context where strong models of gender and sexuality shape performances of personhood, and where the resources channeled through kinship-based networks vastly outstrip state-centered support systems or citizen-based identities. Drawing on twenty months of ethnographic research based in the capital city of Amman, the chapters that follow trace how ambivalent and potentially violent practices of kinship comingle with acts of care to unevenly transform the actors connected through them. Families and individuals in Jordan situate and experience disability – real or potential – through embodied relationships of kinship and faith. These affective ties intimately shape entanglements of self, society, and temporality, which I theorize through the concept of kinship futures. Families mark the passage of time and imagine the future in terms of shifting, embodied capacities for providing care. Down Syndrome emerges through these existing and anticipated relationships. In turn, fears about sustaining family-based economies of care remake Down Syndrome in the present. Kinship futures encompass relationships of moral accountability forged at the nexus of human mortality and divine authority, and they create value and hazards for disabled and nondisabled people alike. Ultimately, Down Syndrome operates as a node where various registers of difference coalesce, providing a powerful lens for understanding how family, gender, politics, and power shape the boundaries and meanings of personhood in contemporary Jordan.