Extraordinary measures of sibling worldmaking.

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.