Lived experience

This term is rooted in phenomenological research in which lived experiences are the main object of study. The aim of such research is not to understand individuals’ lived experiences as facts, but to determine the meaning of these experiences. This is very different from the way the term is now commonly used in the drugs field in Scotland.

This term is currently used to describe both people who have used and / or who currently use drugs (or specifically have or have had a drug problem) and to the experiences people have had in this context. It usually refers to people who have had a substance use problem and sometimes includes people who currently have a substance use problem.

There are objections to this term as it may differentiate people who have had a substance use problem from those who currently have a problem and re-enforce a perceived hierarchy between these two groups. At times though this may be useful where the perspectives and experience of these two groups are different. The term ‘living experience’ is sometimes used to describe people who currently have a substance use problem.

‘Lived experience’ is usually used in a context of advocating the inclusion of people with lived experience in:

  • the planning, design, commissioning, management and / or delivery of services which work with people who use drugs or people with a drug problem (see user involvement)
  • the development of policy or strategy on issues affecting people who use drugs or
  • people with a drug problem (see user involvement)
  • the education in drug-related matters of the public, or the particular groups, for example, young people in schools, people working in services

There is some and ambiguity and contention around the term.

Who is included? Are people who have an active and current drug problem included? If not, why not? How can they be supported to be included in processes that are not tokenistic (see user involvement).

Do all people with lived experience have a useful insight into all drug use or problem drug use and all related issues?

Does lived experience have a ‘shelf-life’? – is experience from years ago still relevant or offer insight today? (See personal narratives)

Because lived experience has come to be used as a blanket term for all personal experience of problem substance use, it may de-personalise people and deny them their individuality and the unique aspects of their experience and opinion. In such a wide group of people there will be a whole range of experiences, opinions, perspectives and prejudices.

Processes to ‘involve lived experience’ face significant challenges including addressing power imbalances and creating acceptable and accessible settings and contexts for this work to be undertaken (see user involvement; see personal narratives).