Experiential knowledge within disability (studies) research

Saturday, November 2, 2013
First author:
Jacqueline Kool
Workshop: Experiental Knowledge


1 Disability Studies in Nederland, Amersfoort, the Netherlands
2 Trimbos Instituut, Utrecht, the Netherlands
3 VU Metamedica department, Vrije Universiteit, Amsterdam, the Netherlands
All authors:

Jacqueline Kool1, Jenny Boumans2, Merel Visse3

Disability experience, experienced knowledge, participation, Disability Studies


Within the field of disability related research, experiential knowledge (EK) or lived experience of persons with disabilities is increasingly valued as part of the research input. But too often it remains undefined what experiential knowledge is and how (under what conditions) it relates to other kinds of knowledge in research. In our project we aim to develop a theoretical and conceptual framework on the nature, meaning and the use of EK.
Assuming that 'belonging' from a disability studies perspective requires fundamental understanding and deployment of knowledge that is derived from disability experiences within research and practice, we would like to share the results of our project during this conference. 


In discussions on the deployment of EK within academic research settings, people with EK and researchers are often regarded as two different groups. Many researchers in the field however also live disability experiences everyday. By bringing together a group of researchers in the disability field with this so-called “double identity” in expertmeetings, we conceptualised EK through a series of concept maps. The outcomes were translated into a questionnaire for persons with a disability involved in research f.i. in patient- and self advocate organisations.
We focussed on four main questions: a. What is EK? b. How does it emerge and develop? c. What is its validity? (in relation to other types of knowledge) d. What does it mean and how does it work? (on subjective and societal level).


The preliminary results imply that EK is hard to grasp in a fixid framework. Because the object of knowledge is the subject itself (in contrast to 'scientific' knowledge which studies the object of disability), the content of the concept is complex, ambiguous and sometimes contradictory. EK nevertheless has a specific meaning for researchers who deal with disability and others they cooperate with. Researchers benefit from this knowledge implicitly and sometimes explicitly to enrich their investigation.


EK can be conceptualized from multiple paradigms, and from an insider and outsider perspective, allowing a more dialogical and a more critical approach to coexist.