The Lived Experience of a Mother of a Young Adult with Intellectual Disability: ‘My Daughter as My Enlightenment’

There is a paucity of research exploring the experiences of mothers of a young adult with intellectual disability sharing the family home. A case study using a phenomenological life story approach was conducted to gather and analyse data from 11 in-depth interviews held with a mother, Linda, about her experiences. Linda’s story yielded three main themes, 1) an intense struggle and hardship of living ‘in the void’, 2) gathering resources and coping to counter the ‘masters of the universe’ and 3) developing a new ‘personal infrastructure’ to exit the void. Discussion underscores the value of stories of mothers and people with disability, including those of ableism, oppression, and stigma. Linda’s story depicts a complex and intricate life with both challenging and enriching times and a strong need for belonging to community. Future research is suggested, such as how mothers manage and negotiate barriers and systems within their lives.