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Extraordinary measures of sibling worldmaking.

Pamela Block1, Helen Ries2, Dima Kassem1

  • 1Department of Anthropology, Social Science Centre, Western University, London, Ontario, Canada.

Medical Anthropology Quarterly
|December 17, 2025
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Summary

Siblings of disabled individuals face systemic challenges during major life transitions. They use "sibling disability worldmaking" to create livable futures despite inadequate support systems.

Keywords:
autisticdisabilityintellectual disabilitysiblingworldmaking

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Area of Science:

  • Sociology
  • Disability Studies
  • Family Studies

Background:

  • Major life transitions, such as parental death, present unique challenges for siblings of individuals with disabilities.
  • Siblings navigate complex service systems and systemic inequalities, impacting their emotional and mental well-being.

Purpose of the Study:

  • To explore the challenges faced by disabled and non/disabled siblings during significant life transitions.
  • To understand the coping mechanisms and strategies siblings employ to create livable futures.

Main Methods:

  • Ethnographic research methodology.
  • In-depth study involving disabled and non/disabled siblings in Canada.

Main Results:

  • Siblings encounter structural/systemic inequalities and difficulties within service systems.
  • Emotional and mental health challenges are prevalent during these transitions.
  • Siblings engage in "extraordinary measures" and "sibling disability worldmaking" to envision and co-create supportive futures.

Conclusions:

  • "Sibling disability worldmaking" is a crucial strategy for navigating life transitions and systemic deficits.
  • Siblings actively co-create livable lives and futures despite lacking adequate systemic support.