Kinship, Connective Care, and Disability in Jordan

Area of Science:

• Sociology of the family
• Disability studies
• Middle Eastern studies

Background:

• Care for individuals with Down syndrome is deeply influenced by cultural understandings of time and family.
• Parental concerns about future caregiving intensify as children with Down syndrome approach adulthood.
• Societal expectations around marriage and adulthood create unique challenges for families with disabled members.

Purpose of the Study:

• To explore how temporalities of care impact families raising children with Down syndrome in Jordan.
• To examine the role of marriage as a symbol of adulthood and its implications for care distribution.
• To understand the challenges faced by individuals with Down syndrome and their families regarding future opportunities.

Main Methods:

• Qualitative research approach.
• Ethnographic study within Jordanian families.
• Analysis of caregiving practices, family structures, and societal expectations.

Main Results:

• Parental anxieties about the future are linked to the children's deviation from normative life trajectories.
• Marriage, while central to adulthood, presents a complex and often inaccessible pathway for individuals with Down syndrome.
• Families experience a "stuckness" due to the intersection of care needs and limited societal opportunities.

Conclusions:

• The intersection of temporality, marriage, and caregiving creates significant challenges for families with Down syndrome in Jordan.
• There is a critical need for expanded opportunities and support systems for adults with Down syndrome.
• Cultural norms surrounding adulthood and marriage require re-evaluation to be more inclusive of individuals with disabilities.