Lived Experience Ways

Since our formation, Thriving Madly has been forced to think about the language we use to describe our identity. Little did we know that choosing to identify as a community of people with a Lived Experience of mental distress, difference and/or addiction would take us on a pathway to figure out what we mean when we claim identity the of Lived Experience.

Our Thriving Madly community has come to understand Lived Experience as a dynamic and evolving paradigm, that is built upon what we call Lived Experience Ways: A Way of Looking; a Way of Understanding and a Way of Doing. These Lived Experience Ways form a Loop of Influence that impacts on environment, changing the experience of those who come after, which then alters the Lived Experience Ways. This Loop of Influence maintains the dynamic and evolving nature of the Lived Experience Paradigm.

The following paragraphs will elaborate on our understanding of Lived Experience Ways, discussing how we see a difference between Personal Experience, Collective Experience and Lived Experience. We aim to outline each of these Lived Experience Ways, and some of the important features we have come to appreciate. We wish to expand on how we believe a Loop of Influence occurs from our Lived Experience Ways interacting with the environment. This is by no means the end of the journey, but a clarification of what we as a Lived Experience community mean when we use the phrase Lived Experience.

Experience

To experience is part of being human. We can try as much as we like to not experience the world around us, but it is inescapable. Experience isn’t just the things that happen to us or the situations we move through. Experience contains other elements, including the sense we make of things – the ‘meaning-making’ we do in relation to the moments that touch our lives. Even if you are sitting at home, not leaving the house, ever, you are experiencing life. You are experiencing YOUR life, and you will be making sense of it. A unique personal sense. For us as a community, we have come to call this our Personal Experience of ‘life’. Instead of ‘life’, you could insert any specified moments or context you have encountered. Personal Experience of sex work, Personal Experience of homelessness, or Personal Experience of mental distress, the list is endless! Everybody has Personal Experience, but what they have Personal Experience of will vary depending on how life has woven for them.

You will notice that we have put at the front of Experience the word Personal. This is an intentional addition to name the individual viewpoint that the Experience is being understood through. It is the property of the individual, their unique understanding or perspective on an experience, and this understanding will contribute to shaping their worldview. So, if we are speaking of this as Personal Experience, what is Lived Experience?

Recently there have been a growing number of people stating they have a Lived Experience of Mental Distress. It is heartening that people are starting to feel more comfortable identifying with these experiences. We have found through our discussions as a community that we see Lived Experience as something quite different to having a Personal Experience.

This then brought us to consider what was meant by the word ‘Lived’. Isn’t ‘Lived’ just living through something?

Lived Experience Ways: Way of Looking, Way of Understanding, Way of Doing

To us, the ‘Lived’ speaks of the processing of Personal Experience, the learnings and perspectives that develop through this, and the actions we then take in response to this new understanding.

This processing is contributed richly, through connection to others with common Personal Experiences. This connection is not just restricted to interpersonal human connection, it can be made through art, books, films, music to name just a few.

Within these connections a dynamic consciousness-raising occurs, bringing new understandings of both people’s experiences, including discovering the intersections and departures that weave between our Personal Experiences. Where there is overlap between us and others, we begin the identification of Collective Experiences. Where there isn’t, we question why, asking what has made each of our experiences how they are. Additionally, within this ‘looking,’ a sense-making exploration begins of what brought these experiences into being. We form knowledge and wisdom, an ‘understanding’ of our experiences and the world. From this, we then consider what we will ‘do’, what actions are needed to transform the experience for those who come after.

As a community, we see these three elements as our Lived Experience Ways: A Way of Looking (lens); a Way of Understanding (knowledge base); and a Way of Doing (actions, practices and skills). We believe over time these have shaped a loosely organised, difficult to pin down paradigm.

This fluidity is in part due to Lived Experience’s nature being embedded in and valuing of all experience. The valuing of all experience means there can be no single uniform ‘Lived Experience experience’. Further to this, as experience is consistently shifting and changing (often as a direct consequence of our Ways of Doing) the paradigm will always remain in a state of flux. It is because of this, that we came to consider that Lived Experience Ways to create a Loop of Influence. (See diagram 1.)

We see these Lived Experience Ways and the subsequent Loop of Influence outworked across many different Lived Experience spaces and roles, from peer workforce to academia, to policy analysts, to social movements, and at a micro-level, how we do relationships within our community at Thriving Madly.

We started to ask ourselves, what are the elements of these Lived Experience Ways? The remaining paragraphs outline some of our thinking that has unfolded in response to this question. Again, these are by no means a final list (it is clear that if a Loop of Influence does exist there will never be a final list) rather these are some examples of what we experience as fitting into these elements.

THE WAY OF LOOKING – Lived Experience Lens

As already outlined Lived Experience Looking involves the processing of personal experiences. This reflection includes examining experience in context, seeing Personal and Collective Experiences, the intersections and departures, and the purposeful holding of space for both to exist and, be valued and accepted. This could be summarised as looking for multiple truths.

Lived Experience sees not only environment in the big picture but people too, it is anti-reductionist. In other words, it sees people and communities holistically. For us, as a community, Te Whare Tapa Whā has been fundamental to our holistic understandings.

Further to this, holistic looking requires us to see people not just as individuals, but as part of interrelated, interconnected, reliant upon one another, life-sustaining groups. We look for the relational ecosystems – or the apparent lack of these. For us, this means not just seeing a person but seeing a whānau.

Lived Experience is always looking for the connections: within ourselves; between each other, with societal systems and structures, and with the environment around us. We understand that connection is vital for life, and therefore a foundational component of experience. By identifying these connections, we can then start exploring them, building an understanding about, for example, what makes up the threads between people; people and environment; and people and their meaning-making. How are connections strengthened or why are they severed? How is power operating within them?

Further to this, the Lived Experience focus on connection also requires a looking for and intention to then understand the connections between peoples’ social identities and their experiences.

Our Lived Experience Looking is seeking experiential knowledge, the wisdom that exists within this, and the possibilities that come from hard times. This means we are often looking for experiences that are not commonly known, that are at times hidden. We are then looking to find what knowledge has come from these. It is a sacred pool of often overlooked and discounted wisdom, hard earnt outside of books.

We believe that Lived Experience agrees that the personal is political, and therefore we look for the personal in the political, and the impact that the political has on the personal. This involves looking for both the positive and negative operation of power across not just our experiences, but all the elements that influenced these.

As we are looking for ‘collective liberation’ (which holds that liberation for one is bound in the liberation for all – no one is truly free until all are truly free from oppression), we scan for where oppression is evident not only in our stories, but in that of those around us. Lived Experience involves being open to others’ truths even when they may not have been our truths. This requires us to look with humility, understanding that the lens we see through, shaped by our experience, may not see clearly when reflecting on another’s.

Despite having our eyes open to oppression and marginalisation, we aren’t focused solely on the problems, rather we are looking also for the possibilities for action. This involves identifying where things could have been done differently, and if they were, would have created an alternative, more positive experience.

Lastly, all this looking is informed by Lived Experience values. There are many values, some which are important to our community being Mutuality, Reciprocity, and Self-determination, which in our experience are inherently interrelated.

Mutuality is a multifaceted concept, but we see a significant component is the understanding of power and the intention for sharing it.

Another complex concept, reciprocity for us, is not just about being able to ‘give back’ or understanding that our contribution to the world around us brings a sense of purpose, belonging and value. It also importantly holds the understanding that there is always a consequence to action. We see these are intrinsically linked, and so we want to move forward in ways that are intentional, mindful of what will be reciprocated, in other words, what will come back to us, the outcome.

Self-determination speaks to not just living in an environment that allows for us to practice sovereignty over our lives, but also recognising the role each of us has in actioning our sovereignty. Together these values inform one another contributing to how each is outworked.

In terms of how these shape our Way of Looking, we see that mutuality means we are Looking for the operation of power in relationships, considering what shapes this, and how power is being used. Reciprocity focuses us on actions and consequences and identifying the possibilities for contribution. Valuing self-determination asks us to watch for barriers and enablers and in what ways people are exercising sovereignty over their lives.

As a community we are now Looking at our ‘Looking’, trying to understand this in greater depth – which is arguably the very reason we Look. This brings us nicely to our discussion on Lived Experience Way of Understanding.

THE WAY OF UNDERSTANDING – Lived Experience Knowledge

One of the consequences of holding space for multiple perspectives is that there is not a single Lived Experience knowing, rather there are many knowledges that make up our Way of Understanding. This, multiple-knowing, combined with lack of clarity about these, can make it difficult for people who are used to more traditional knowledge bases to make sense of us or understand what we bring to discussions.

As a community we have a particular interest in wisdom. We believe that each of us, through our experience of distress, has developed Mad Wisdom. This is our language for what we see occur when general wisdom as identified by Staudinger (2013), is transformed into personal wisdom through our experiences of mental distress and/or difference.

We see Lived Experience Wisdom as forming when Lived Experience Looking is cast across Personal Wisdom. By considering this wisdom through our Lived Experience Lens we start to see Lived Experience Wisdom unfold. One possible example of this that plays a significant part in the life of our community, is the Principles and Tasks of Intentional Peer Support (Mead, 2014). While we use the word wisdom, others might use different language, including models, knowledge, perspectives.

Sometimes we have found that Lived Experience understandings include knowledge that has been developed through research on our experiences, or that people with Lived Experience have been involved in constructing.

One example of this which has been transformational for many within Thriving Madly is the Power Threat Meaning Framework (Johnstone, L. & Boyle, M. (2018)). Much more than just an alternative to psychiatric ‘diagnosis’, it has contributed to shifting how we understand our experiences.

Part of the reason that it resonates, is the knowledge of active involvement of people with a Lived Experience in its creation. This example highlighted for us that being birthed from Clinical Experience does not always make it non-Lived Experience.

As a community, we have come to consider some knowledge and actions are, what we call ‘Birthed-from’ Lived Experience, whereas others are ‘Influenced-by’. The distinction between being Birthed-from vs Influenced-by, is an important understanding for us as we experience a notable difference when we interact with each of these.

To be Birthed-from Lived Experience means that its ‘birth’ is a Lived Experience Doing. In other words, it is an action that has come from looking at Personal Experience, crafting understanding from that, and then planning activities to bring about a change in the experience of those who come after. Its birth is an outcome of our Lived Experience Ways. An example of this could be the starting of a support networked by someone who had been through an experience and not been able to find appropriate support.

In comparison, Influenced-by is when a ‘something’ (service, organisation etc) has sought out and established a connection to Lived Experience. Through the relationship, an effort is made to see through the Lived Experience paradigm. As a consequence, new understanding is gained, and importantly, action is taken to do things differently to improve things into the future. To be Influenced-by involves choice and commitment. To get to this place is to be celebrated, however, it is still different from being Birthed-from. Interestingly this ‘Influenced-by’ can go either way, for example, a Birthed-from peer support service being incorporated into a clinical service, a consequence of which could be the erosion of faithfulness to peer values.

One of our community wisdoms is that we are constantly being influenced by our experiences in the world which therefore means that Lived Experience can be Influenced-by ‘outside’ elements. Clinical Experience is one example of an influence that we see people within the Lived Experience of mental distress, difference and/or addiction space being particularly cautious of. The language we hear people use to describe the process of Lived Experience moving away from its Birthed-from position is ‘Co-opted’.

We see a distinction between being Influenced-by and being Co-opted (this could be a whole piece of writing itself!). For some of us within our community that have both Clinical Experience and Lived Experience, we have found ourselves wondering which of our experiences is being Co-opted. However, there is something to be said about the inauthenticity of something that claims to be Lived Experience, that through its connection to Clinical Experience, its service delivery expectations, or its broader societal factors, that it has become completely emancipated from its Lived Experience value base.

As stated, we believe Lived Experience Way of Understanding is an area that needs greater consideration, as it informs the actions we take to bring about change. For us as a community, working towards community actualisation, change is ultimately what we are all about.

THE WAY OF DOING – Lived Experience Actions

Lived Experience is in our mind, inherently action orientated. One of the influences on shaping this understanding has been the Principles of Intentional Peer Support (Mead, 2014), all of which contain a Moving Towards focus: From Individual to Relationship; From Helping to Learning Together; From Fear to Hope and Possibility. This action orientation also exists within our Way of Looking and Understanding, as both hold that looking and understanding are not enough. There is a requirement to act to shift things for those who come after. But what is the Doing?

We consider there to be three components to our Ways of Doing and identify these as Actions, Practices, and Skills.

Actions speak to the overarching planned and purposeful steps we take to bring about change, an example being Peer Support

Practices bring to life our Lived Experience Understandings, it is the application of our knowledge base, for instance, the practice of Mutuality

Skills are not just about being able to do something well, to develop expertise, rather it is the specific tools that support us to practice, in our view examples of these would be the skills of Relating and Validating

With the examples above we can see the weaving between; establishing a Peer Support service would be the overarching action; Mutuality being a practice within this; and the skills that enable this are Relating and Validating, which over time grow in expertise.

Diagram 2.

Peer Support is only one illustration of Lived Experience Doing, we would like to elaborate on two others that are important to us as a community: Making Public (elements of the Personal Experience) and Giving Voice.

Making Public

The moment we state ‘I have Lived Experience’ we are stepping into a Lived Experience Way of Doing: Making Public elements of our Personal Experience. This brings about a shift in our public identity and can be costly, depending on the flavour of the Personal Experience that Lived Experience is built upon.

For some in our Thriving Madly community, identifying their flavour of experience maintains their marginalisation. Standing with them and including all in our community identity is foundational to our belief in Collective Liberation. We accept that this could impact how our community is seen, including a reduction in credibility, increased perception of dangerousness and/or assumption of vulnerability. The Lived Experience action we choose in response, is to step into the stigma, prejudice, and discrimination alongside them, journeying together to transform the impact.

To mitigate this, some people will identify as having a Lived Experience, but will not speak to the Personal Experience which informs this. Identifying as Lived Experience does not mean we need to spell out in neon lights what our experience is! It is up to each person to self-determine their level of disclosure and how they choose to manage their identity. There are spaces where some identities are not able to enter or be seen as credible, and so maintaining a Lived Experience identity without clarification of the personal experience associated can be useful.

However, the Lived Experience valuing of Collective Liberation requires us to be mindful of the impact of maintaining a sane-passing front-facing identity on those who are unable to choose how they are seen. We have found ourselves contemplating whether by our omissions we are missing opportunities to challenge the stigmatising narratives about our flavour of experience. Always in our mind, we are weighing up whether or not our decisions around our level of disclosure are based in solidarity with others to move towards a transformation of future experience.

Even when a person does not make explicit that which informs their Lived Experience, by the very nature of identifying as such, particularly in taking up dedicated Lived Experience roles, they will come to be seen in a particular way. Choosing to speak from a Lived Experience paradigm may at times put them in conflict with those around them. These people step into conversations that create the possibility for Influenced-by Lived Experience outcomes and Give-voice to our aspirations.

We are grateful for people who take up these roles and humbly believe reciprocity creates a responsibility is to support them to weather the challenges that being identified as Lived Experience presents.

Giving-Voice

For our community, we see Giving-voice as different to sharing one’s own Personal and Lived Experience. Instead, we see it as the intentional act of creating pathways for other voices to be heard.

Lived Experience values, particularly that of equity, require a commitment to privileging the Personal Experience voices of those who have been most marginalised. Remaining connected to those of present-day experiences is also vital, as Lived Experience representatives may not have present or even recent experience of a policy or situation they are Giving-voice to. We also believe that it is important to be aware that Lived Experience voice is arguably socialised; our understandings of our Personal Experiences have been influenced by the Lived Experience paradigm.

This has brought a belief that people in Lived Experience roles are representing the paradigm of Lived Experience rather than representing all Personal Experiences. They can speak to their Personal Experience but outside of this, the Lived Experience paradigm asks that they create pathways for all experiences to be heard. In this way, they are ‘Giving-voice’.

Creating these pathways involves the Lived Experience Doing of Building Connections. This includes establishing and supporting the maintenance of, what we call, Connection Networks across communities, not just those of location but varying of experience. Building healthy Connection Networks requires a commitment to one another and for organisations to move past competition and remain focused on transformation.

If we are unable to make a direct pathway from person to listener, then the Lived Experience human may find that they are the pathway, which requires them to ensure they practice being Spoken-through, which sits counter to our traditional experience of being Spoken-about or Spoken-for, neither of which allow people to maintain their authority and position as author over the stories of their lives. We believe it is vital to Give-voice in ways that will allow the voices speaking through us to write the chapters of change.

The Practice of being Spoken-through starts with how we connect to the people who are speaking through us. We connect through Mutuality, looking for the person’s story in its fullness, working to understand the persons’ truth, holding it as valuable even when worldviews are not aligned. We reflect and check that we are understanding accurately. At this point, we may bring to the dialogue our Lived Experience Lens and Knowledge, not to trump the other’s perspective but to check where both people’s understandings align and depart.

Then, even though we may not agree, or understand their experience in its entirety we, with their consent, bring the person’s story, perspective, or the learning we have gained through the connection, to the attention of others, conveying what they said and believe. We accept that being Spoken-through will involve conveying these multiple truths, some of which we may not agree with.

Lived Experience Loop of Influence

As stated already, Lived Experience is a dynamic and evolving paradigm and we believe this state of flux is maintained by a Loop of Influence that is established by the connection between the environment, experience and Lived Experience Ways.

People are experiencing the world daily, from which, their own Personal Experience forms. They may begin processing this and encounter Lived Experience Ways. Through looking differently at their experience, new understanding is gained, which informs strategic planning to take action to create change in the environment. If successful, this transforms the environment, meaning people then have new Personal Experiences. This new experience is Looked at, the difference identified, requiring new Ways of Understanding, which demands new Ways of Doing, again influencing the environment, changing the Personal and Collective experiences that Lived Experience develops from. The loop (hopefully) continues until the best outcome is achieved for all.

This constant interaction between environment, experience and Lived Experience ways, shifting and changing one another is vital to Lived Experiences success. If Lived Experience continues to be dynamic and evolving, it is staying true to itself serving its purpose. However, this dynamic nature can present as challenging for social justice movements, as it can feel like there is never an agreed-upon voice, view, goal or action.

However, for us as a community, we have come to see that there is a Lived Experience unifying goal: “the improvement in the experience of all who come after”.

And so, this for us, is why we stake claim to the identity of Lived Experience: it provides us with the unifying intention to work together to build a community that is improved for all.

References:

Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. Leicester: British Psychological Society

Mead, Shery. Intentional Peer Support: an Alternative Approach. Intentional Peer Support, 2014.

Staundinger, U. M. (2013). The need to distinguish personal from general wisdom: a short history and empirical evidence. In M. Ferrari & N.M. Estrate (Eds.), The Scientific Study of Personal Wisdom (pp. 75 – 97). Netherlands, Dordrechet: Springer.