Parents of children with disabilities do not 'choose' one view of disability. Several perspectives operate at once — sometimes in contradiction — inside a single day. Research calls this the living web of worldviews.
1. A map of the five
Applying the models-of-disability literature (Retief & Letšosa, 2018) to parents' lived experience yields five worldviews:
- Medical — disability as a condition to treat and improve
- Moral-religious — disability as God's will or a test
- Social — disability as barriers society builds
- Identity — disability as part of who the person is
- Rights — disability as a matter of human rights
2. None of them is the 'wrong' one
Academic writing is used to criticizing the medical model, but in a parent's reality the medical worldview delivers real goods: access to treatment, insurance, a socially legible explanation. Parents hold it for reasons.
What the dissertation research observed is that mothers play these perspectives like an orchestra — medical language at the hospital, rights language at school, another language in prayer — and the ability to move among them is itself a form of wisdom.
3. The problem is not the worldview but its invisibility
What hurts is not any particular perspective but not being able to see which one is driving you right now. An invisible belief cannot be examined, and an unexamined belief easily becomes a channel for guilt.
Name the worldview, trace when it arrived and who sustains it, and a parent becomes able to set their own distance from each one.
4. Three questions to start with
What sentence about my child's disability was loudest this week? Which of the five worldviews did it come from? What does that worldview give me — and what does it demand?
These three questions alone begin turning the fog into a map.
Frequently asked question
Should parents abandon the medical worldview?
No. Every worldview carries both costs and benefits. The goal is not disposal but knowing what each gives and demands — and setting your own distance.