"I Do Not Think She Will Understand, This is Not a Situation for a Girl Like Her:" Disenfranchised Grief Among Adults with Intellectual and Developmental Disabilities in the Ultra-orthodox Jewish Society.

Abstract

This article examines the experience of aging ultra-Orthodox families alongside a person with intellectual and developmental disabilities (IDD) in relation to parents' illness and death, followed by grief. In-depth interviews were conducted with 14 family units. Each family unit included the person with IDD, a parent, and a sibling-a total of 43 participants. Three main themes emerged: A. The difficulty in confronting illness and dying of parents alongside a family member with IDD in an Ultra-Orthodox Context. B. Exclusion of the person with IDD from parents' memorial events. C. Religious ceremonies as a strategy for coping with mourning among persons with IDD. The discussion focuses on the concept of disenfranchised grief in a religious context and its impact on the family support system. Culturally sensitive therapeutic recommendations are made for professionals working with older ultra-Orthodox Jewish families alongside a person with IDD in the context of the subject.