Nothing about us without us! How to fulfill participation

Friday, November 1, 2013
First author:
nancy Lievyns
Workshop: Experiental Knowledge

GRIP vzw, Brussel, Belgium

All authors:

Nancy Lievyns

Disability experience, experienced knowledge, participation, Disability Studies

Our aim is to explore the concept ‘experiential knowledge (EK) and the importance of  EK in Disability Studies.The abstract is based on our presentation at the ‘Nothing about us without us! Conference’, Louvain 2009. It was the result of an internal consultation with GRIP volunteers working on EK.

Historically society was built by people without a disability. People without a disability organized research and social work. People with a disability had no voice. And still haven’t one. Nevertheless people with a disability have an interesting view on disability, starting from their experience.

We at GRIP are convinced that it is a human right for people with disabilities to take part at all levels of society. We are all born in the same world. We all have the right to contribute to our world. So it’s our right to claim the recognition of our disability experience a.o. on the field of research and social work. We work hard for more experiential knowledge (EK) in a.o. research and social work.

Before we can use experiential knowledge, it is important to have a unambiguous definition of the concept.

Research is important in the construction of society. It can make all the difference. So we plead for Disability Studies. In Disability Studies people with a disability must be involved. The main question is how to realize participation of people with a disability in research programmes. How can we evolve from a suffering object to a leading subject? What does the input of experiential knowledge mean for research objectivity? And how can we guarantee that everyone can take part? Or can only people with an academic title take part in research? Which competences are needed to put in your disability experience? How can we, as persons with a disability, take leadership in research programmes?

We, as persons with a disability, have a unique disability experience that leads to disability identity and a disability world view. Our perspective is essential if we are to come to a society that respects any form of diversity. That is why we strive for the recognition of experiential knowledge. In dialogue, experiential knowledge and professional expertise reinforce one another. Without a clear framework, experiential knowledge does not have any strength. For everyone to be given the opportunity to use experiential knowledge it is imperative that a number of preconditions are met.