“If society doesn't provide affordable options for our children,” explained Umm Fadi,Footnote ¹ the mother of a teenage boy with Down Syndrome named Fadi, “then they stay at home.” “And in the end,” she added, “the whole family becomes disabled” (muʿāq). Umm Fadi's statement reinforces a central tenet of the prevailing social model of disability, a cornerstone of rights and policy development around the world. This model situates disability as the consequence of systemic exclusion and discrimination rather than individual bodily impairment. The anthropology of disability is an emerging field based on the premise that divergent bodies and minds are fundamental aspects of human difference and social life.Footnote ² Inevitably, difference is lived and made meaningful through the regimes of embodied knowledge and power that operate in a given historical moment.

Historians and scholars of religion have led the charge to integrate disability into Middle East studies. Archival sources reveal diverse experiences and conceptualizations of embodied difference, attesting to the historical specificity of disability. In my research on cognitive disability in contemporary Amman, accounting for specificity raised different challenges. Ammanis have embraced the social model, which relies on universalizing tenets of liberal humanism to naturalize its own assumptions about bodies, relations, and politics. As an anthropologist, however, I remain attentive to the contingent assemblages of materials, qualities, and relations that produce the body and the social as seemingly stable categories.Footnote ³ To fully grasp what Umm Fadi's words reveal about disability in Jordan, I consider how local models of personhood and relationality shape understandings of self and society. These configurations weave together sedimented practices of kinship, religion, law, and economy with newer mediating forces of transnational NGOs, social media platforms, and biomedical or therapeutic regimes.

Umm Fadi's statement distributes disability across kin, and her schema informs my contributions to this roundtable. First, I argue that disability emerges through the social institutions and historical memories that shape everyday realities of care.Footnote ⁴ Recognizing care as an ethnographic practice and a theoretical framework, my data suggests that for many Ammanis, disability rights and justice remain closely wedded to normative structures and values of kinship. In turn, this allows me to theorize how kinship adapts and endures as a mode of politics and a means for crafting subjectivity in Jordan today. Second, and reciprocally, an ethnographic focus on disability, as negotiated through networks of care, calls attention to processes of creating and undoing personhood. An anthropology of disability sheds light on the ways that care, love, risk, and harm comingle with the uneven structures of neoliberal development and economic insecurity that pervade everyday life in the contemporary Middle East.

Fadi's mother, father, and older siblings worked together to understand and meet his needs. Despite their high levels of education, income, and social capital, unpredictable frustrations often left them scrambling for resources. Webs of institutional bureaucracy, prohibitive private sector prices, and YouTube information overload represent only some aspects of Amman's shifting disability landscape, which can overwhelm even the most privileged of families. New laws align with the United Nations Conventions on the Rights of Persons with Disabilities, early intervention services are available, and biomedical procedures can ameliorate the secondary complications that contribute to mortality rates among disabled infants. Many families, however, described the law as “ink on paper.” Services remain concentrated in the country's urban core, and parents must possess both financial and cultural capital to harness these potentially life-changing developments.

Given the lack of reliable, accessible infrastructures for supporting disabled children and adults in Jordan, especially those with cognitive disabilities, the protection of rights and provision of services remain deeply embedded in family networks and energies. The parents, siblings, professionals, and activists I met during my research articulated developmentalist narratives of culture and progressFootnote ⁵ that reinforced, even as they sought to criticize, the persistence of disability stigma across Jordan. They described the past as a time of ignorance and neglect, when families hid disabled children at home to prevent the threat of social contamination. The present, in turn, offered unparalleled opportunities for promoting awareness and actualizing change. Yet these boundaries remained porous, and I found that the image of a disabled child, hidden at home and restrained against their will, continues to symbolize the stakes of disability in Jordan today.

In this moral framework, disability and the failure or success of care become diagnostic of familial, educational, and religious commitment. These domains play critical roles in the contested visions of development and modernity that dominate public discourse and personal identities in Jordan and across the region.Footnote ⁶ Disability-as-human-rights movements provide energy and connections for enterprising organizations and individuals fighting to address the isolation and marginalization of disabled people. Yet I often found myself, along with the parents who were my primary interlocutors,Footnote ⁷ provincializing the epistemology and political economy of dominant disability theory and politics. These remain tied to their conditions of production in secular, democratic polities. The very conceptual architecture of disability changes as it becomes locally embedded, raising questions about the relationships between disability, liberalism, cultural relativism, and global inequalities.

My ethnographic focus on disability opened new windows for tracing enactments of kinship, embodiment, and personhood in a context where marriage plays a pivotal role in defining the boundaries of legitimacy for families and persons. As economic and social factors affect marriage patterns and rituals across the region, proliferating discourses of societal and gender crises attest to these deeply intimate and intimately political dimensions.Footnote ⁸ Uncertainties of cognitive disability become especially salient in this context. Across ethnic and class boundaries, participants in my project agreed that given the high stakes of marriage—a system for generating social security and standing—the stigma of disability was inextricably linked to fears about the marital prospects of siblings and cousins. In fact, they argued, any health condition capable of generating etiological uncertainties could potentially endanger a family's marital status.

The uptake of diagnostic and assisted reproductive technologies across the region shows that historical models for tracing family identity and origins can accommodate biogenetic concepts and materials with considerable ease.Footnote ⁹ These models have not diminished with the rise of biogenetics; fears surrounding the transmission of disability persist. On the one hand, some parents pointed to the open-endedness of scientific knowledge, reasoning that certain conditions may indeed pass from parent to child in ways that science has yet to discover. Others, however, spoke to more deeply held convictions that the qualities and histories flowing through family lineages and from mother to child cannot be reduced to biogenetics alone.

Applying the lens of disability to family life also illuminates how particular aspects of bodily and cognitive capacity are central to achieving adult personhood. Adult status, in turn, remains intimately tied to the realization of certain roles and obligations within kinship networks. Increasingly, it also cannot be separated from capitalist hierarchies of labor that effectively parse different kinds of persons. Most young people in Jordan envision—or begrudgingly accept—marriage as a key, transitional life moment. And from a material standpoint, young people today cannot afford to get married without family contributions. In reality, of course, marriage is neither inevitable nor permanent. Its importance to achieving adult status, however, presents challenges for disabled individuals. Umm Firas, for example, explained that she could not imagine practically or financially supporting her adult son with Down Syndrome and his spouse, were he to marry. For Firas, the inability to work and inability to marry intertwined. Less at issue was the nature of his cognitive difference than the costs of marriage and structural barriers that prevented him from achieving a degree of financial self-sufficiency. Deeply invested in her son, Umm Firas continued to reject his desire to marry and create his own form of adult personhood.

Ultimately, a disability-centered anthropology of the Middle East asks how normative and non-normative bodymindsFootnote ¹⁰ come to matter through competing regimes of value and risk.Footnote ¹¹ Disability in contemporary Jordan scales up to debates about national identity and progress and scales down into the most intimate aspects of human embodiment and interdependence. The phenomenological and political dimensions of embodied difference continue to generate provocative conversations across Jordan's public domains and within families about identities, tradition, and the means and meanings of social change.