What is the role of lived experiences in arriving at knowledge. Can experience always be trusted? 

In the industry currently, a large emphasis is placed on the personal experiences of those with disability to arrive at knowledge to inform the direction of change in society. Personal experiences advise what structures should look like, and even what language should be used.

This shift has occurred for good reason, since in recent history in the West, disabled people were institutionalised, dehumanised, and stripped of all dignity. Their perspectives and experiences of disability were ignored, assumed and actions were imposed. In today’s context, as we backtrack from these errors, we must find a balanced understanding of what the authoritative sources are for arriving at knowledge to drive change within society.

To inform policy and practice by the lived experience of people with disability is considered best practice by the Australian Institute of Family Studies. Because of this, people with disabilities have been involved in co-designing multiple initiatives and policies recently in Australia, including Australia’s Disability Strategy (2021-2031). The second priority of the document reads as follows when speaking of a trauma-informed approach to disability services:

“Traumatic life experiences require responses catering to the lived experience of the individual.”

While including people with disabilities in decisions that impact them may contribute to achieving better outcomes for them, lived experience may not be the most effective way to address real needs.

Although valuable, experiential knowledge cannot be the only authority in understanding reality. This is because people’s experiences often contradict due to the subjective nature of experiential knowledge. We can easily interpret challenges or difficulty through the lens of our presuppositions and inclinations, and therefore often communicate those experiences different to the reality. 

For example, this is possibly why we have seen such dramatic shifts in accepted terminology used for Autism. Because of differing lived experiences and varying  perspectives of the subject matter, we have been advised to call people ‘Autistic’, then ‘a person with Autism’, then a couple other variations, and now back to ‘Autistic’. Thus if we place authority in lived experiences to determine a consensus on knowledge, the result can be volatile. Although we are always growing in our knowledge base as humanity, we should seek to find more secure and foundational methods of understanding.

In modern research, lived experience has become an influential measurement for understanding phenomena, but these findings should be challenged in consideration of their variability depending on bias, volatility and limited reliability.

Decision makers and leaders who drive change and write policy do not necessarily have to have their own, or operate on the foundation of, lived experience.

Other ways of arriving at knowledge may include collecting empirical evidence, through observing the bigger picture, recognising natural law, and ultimately through the written means of divine revelation. Certain timeless principles are applicable in any context and help to solve problems in effective and long-lasting ways.

Experiential knowledge can, however, validate the knowledge base constructed from other sources. If there is no experience of an idea, it is not a reality. Thus, it is essential to see a combination of knowledge constructed though recognising unchanging truths and evidences, and testing predictions through experiential knowledge to solidify understanding.