Kinship, Connective Care, and Disability in Jordan

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.

KEYWORDS:

• Jordan
• care
• disability
• gender
• kinship
• marriage

Acknowledgments

I am most grateful to the families and individuals who showed me hospitality and generosity during my fieldwork. I alone bear responsibility for any errors in interpreting or analyzing our conversations. I owe a huge thanks to Patrick McKearney and Anna Zogas for spearheading this special issue and remaining most patient with me. Three anonymous reviewers engaged my work with uncommon generosity and greatly improved this manuscript. An expansive support crew – Susan MacDougall, Ellen Rubinstein, Rayya El Zein, Tyler Zoanni, Allison Caine, and Nama Khalil – helped me rethink and clarify my arguments. Translation of this abstract was provided by May Achour. A final and heartfelt thank you goes to Lenore Manderson and Victoria Team.

Notes

1. All names in this article are pseudonyms.

2. Extensive work has documented the challenges that young people with intellectual disabilities, face as they age out of secondary secondary service (Certo et al. 1997; Cobb and Alwell 2009; Hart Barnett and Crippen 2014). In the United States, research focuses on implementing the mandates set forth in the Americans with Disabilities Act, Individuals with Disabilities Education Act, and the School to Work Opportunities Act (Shandra and Hogan 2008).

3. Ellipses indicate my choice to eliminate certain repetitive comments or unrelated phrases.

4. I am using a simplified version of the International Journal for Middle East Studies Transliteration System that omits most diacritics.

5. The Ministry of Social Development has committed to eliminating residential institutions over the next ten years (Al Bishnaq 2019; Dustur 2019; Higher Council 2019; Nimri 2018).

6. Feminist philosophers Licia Carlson and Eva Feder Kittay use the modifier “cognitive,” rather than “intellectual,” given that “some forms of cognitive disability do not imply diminished intellectual capacity” (Carlson and Kittay 2010: 1). The National Down Syndrome Society’s language guide cites both intellectual and cognitive as appropriate, while the NIH considers Down syndrome an “intellectual and developmental disorder (IDD).” Jordan’s 2017 Law on the Rights of Persons with Disabilities uses the adjective dhihiniyya, which they translate as both intellectual and mental in the English language version (Higher Council n.d). I have used both “intellectual” and “cognitive” in my previous work and continue to wrestle with the implications and limitations of their connotations.

7. Dependent nationality laws prohibit Jordanian women from passing citizenship to their children or to non-Jordanian spouses, effectively rendering children of mixed-citizen marriages foreign-born or even stateless. In Jordan, the family book is an identity document issued to male heads of household that enables children to enroll in public school, acquire passports, and obtain various forms of public assistance. Children remain in their father’s family book until they marry. Upon marrying, male heads of households begin their own family book, while women join those of their husbands. Jordanian women married to foreigners can acquire a family book, but it cannot include their children as beneficiaries (see Bailly 2018 for recent developments).

8. Patrilineality, or “kinship descent through the father’s lineage… is often conflated with patriarchy in societies in which both are present” (Joseph 1999: 295).

9. Disability and impairment remain peripheral to anthropology in the Arabic-speaking Middle East. Marcia Inhorn and Aditya Bharadwaj’s framing of infertility as a kind of reproductive disability (2007) is one exception. Contributions from other fields include Vardit Rispler-Chaim’s analysis of Islamic law in relation to marriage and disability (2007), Mohammed Ghaly’s work on disability and Islam (2019, 2016, 2008), and Kristina Richardson’s (2012) and Sara Scalenghe’s (2014) respective historical studies on disability in the medieval and Ottoman periods.

10. Men are responsible for the provision of a bridewealth payment (mahr) and a stipulated alimony payment (mu’akhar), along with expectations for adequate wedding celebrations and housing. Gebel and Heyne (2016) and Salem (2012) dispute the impact of increasing costs on marriage rates in Jordan, but Salem notes a significant rise in housing expenses. This confluence of factors significantly impacts disabled men in Jordan, where an estimated 7.7% of people with disabilities in are employed in any capacity (Azzeh 2015).

11. The majority of domestic workers in Jordan, according to data collected in 2011, arrived from the Philippines, Indonesia, and Sri Lanka, but efforts were also being made to recruit from Bangladesh and Ethiopia (Frantz 2014).

Additional information

Funding

The fieldwork for this article was funded by the Fulbright US Student Program and the University of Michigan’s Rackham School for Graduate Studies and International Institute. Dedicated writing time was provided by a National Endowment for the Humanities fellowship at the American Center for Oriental Research in Amman, Jordan;Fulbright Association [Fulbright U.S. Student Program];Horace H. Rackham School of Graduate Studies, University of Michigan; University of Michigan;

Notes on contributors

Christine Sargent

Christine Sargent is an Assistant Professor at the University of Colorado Denver. Her work focuses on kinship, disability, and bioethics in the Middle East and in North America. Address correspondence to her at Department of Anthropology, Campus Box 103 PO Box 173364, Denver, CO 80217-3364. Email: [email protected]