Live Stories Between Self-Sacrifice, Dependency, Overprotection and Neglect

My paper is based on my PhD research, for which I have conducted biographical interviews with mothers whose children were diagnosed with a disability during infancy. All interviewees continue to live with and take care for their adult disabled children.

In the UN Convention on the Rights of Persons with Disabilities, individual autonomy including the freedom to make one’s own choices and independence plays a fundamental role for people with a diagnosed disability. Especially within the professional field of disability services, the transition into adulthood and subsequent independent living is seen as a major biographical aspect to fulfill the right of one’s individual autonomy. The exercitation of this right therefore is seen as conflicting, when disabled children become adults but remain living within the family home. When mothers prevent the adult child from moving out and thereby not adhering to this generally expected step, accusations of physical, psychological, social and economic encroachments are quickly raised. In addition to the demanding caring responsibilities, they have to continuously demonstrate to the outside world why they “need” to remain the main care giver. The question therefore is, are these mothers keeping their adult child in a dependent life situation for their own benefit?

While these mothers are often accused of overprotecting their child and causing harm in that way, another question that arises within this research is that of guilt. Is it possible that some women sacrifice their own life, because self-inflicted or experienced violence, may have played a role in their child’s diagnosed disability?

In this presentation I will discuss the perspective by which mothers and women express their „themes“, how those themes are exposed, what they feel secure talking about, what they find difficult to talk about and what is possibly even unspeakable.