That’s a question I’ve been thinking about for the past couple of months. I feel like it will be a personal answer for many people for very different reasons. For me, it’s not only a matter of my personal experience but also of this emerging opportunity. The possibility of seeing this develop into a specialized field that other professionals recognize. Keeping all of that in mind, it’s no wonder this has been something stuck in my head.

Steele Kelly and I sat back down to think on this a bit more in the second part of this Lived Experience series.

Susie: It’s been difficult for me to find different fields of research that are, you know, screaming out theories and practices around Lived Experience. I’ve looked at a variety of different areas. I’ve looked at stigma, then at phenomenology, which is viewed differently than what I think we’re talking about now. I’ve been looking at identity development because I think that’s part of this dialog. I’m trying to figure out where there are crossovers but then also where the delineation between Lived Experience is and the other types of similar concepts.

For example, in identity development, you have majority group identity development and minority group identity development. While each has similarities, there are also some major differences. If you’re in the dominant group, you don’t have the same type of hurdles to overcome when interacting with others. Often others must adapt to your and your societal expectations to fit in or be valued. For minority group identity development, you’ve got someone who’s just happily living their life. Then, something happens and prompts a realization that they don’t necessarily fit in the dominant group. Then you have a lot of introspection of what this means to be this person who is now also somehow not fully immersed in whatever culture I exist in.

The development of your identity is part of your Lived Experience. Is this identity development something you’re consciously aware of if we’re talking about Lived Experiences? Can you put language around it, or is it simply your experience, no matter what that looks like?

Steele: I really like some of the ideas there, and as I hear you talk and I’m thinking through my own head, I try to think of why it matters? I heard you saying that realization of where you are in your life and where you are in that process of experiencing it. I’ve previously called it the human experience. There seems to be universal truth or universality that makes itself known or becomes apparent. It’s almost a coming of age, if you will because it’s a maturity process. A process of where you are in that experience. How your identity is being developed and who you are becoming. There is the experience, but it’s the maturity to also look back on that experience, understand what happened, view that experience, and make sense of the meaningfulness of that experience.

I used the astronaut analogy in our last conversation, but it could be dealing with homelessness. Those experiences are totally different, but the universality, deeper knowledge, and understanding are a huge chunk of exactly what we’re talking about.

Susie: That’s part of what Max Van Manen discusses in his phenomenology book. Which is how to research and explain universal themes found in Lived Experience. Looking for that thread between experiences.

He examines different types of events, like abandonment, for example, where the mother has left the children. There are different situations because no situation will be the same, but the overarching theme is maternal abandonment. He’s looking at the universal truth of what this means to these individuals for the rest of their lives? In each of them, he’s looking for the lesson, for the thing that can be learned and even prevented from harming a person’s growth.

There are different ways of learning. Shared learning is the most important kind because we pull from one another. We sometimes forget the essence of being a human being: connection and community. That’s the beauty of having gone through something. You can then impart some type of knowledge or even comfort to others.

I’ve taught many suicide prevention classes, and the main component of truly preventing suicide is a connection. Comfort allows us to build a foundation for connection. When people share their experiences, beliefs, and their thoughts. It becomes a whole different learning environment.

Steele: Yes, when the person next to you says, I have had experience with suicide myself. I have thought about suicide. It changes people’s thoughts. You may believe something is right or wrong, but the person next to you says you know what, my daughter or son, you know they’re struggling with this. It becomes a very real and personal thing. As we start to talk about Lived Experience, it becomes a shared experience, meaning we share a more intimate view or knowledge of something we wouldn’t have otherwise.

Some people, for example, have robust, strong ideas. Many folks have to think hard and examine their values and beliefs to expand how they view an idea or experience. The world is not black and white, I hate to say it, but the entire world is just shades of gray. Sometimes you have these rigid beliefs, thinking yes or no, good or bad, and you figure out it’s anything but that.

That comfort piece resonates when I hear Lived Experience because I’m hearing people destigmatizing topics, making it comfortable for people to be a part of that experience and broadening a view that may not have been a fuller picture. By sharing, you can make it more comfortable for those around you to have a truly human conversation about human issues. Just hearing that word comforted again really resonates for me.

Susie: There are two things that I feel matter about Lived Experience: comfort and stigma. Goffman talked about how we normalize stigma. That word is everywhere, in every space. Everyone talks about stigma. It’s become a buzzword. I don’t know that people have looked at it analytically. I will ask, “how do you address stigma?” I get a lot of blank stares. It’s not that I’m trying to put people on the spot, but I think they sometimes only know it’s bad. They know that it surrounds certain things, like mental health, but they don’t often think about what actual strategies we could employ to address it.

Goffman talks about various intentional or unintentional ways of addressing stigma. He uses the word “normal” a lot in his text. When we look at why this matters, that’s one reason. If we can create a field of experts in Lived Experience to destigmatize important issues that impact individual lives, why would we not want to do that?

Lived Experience experts could offer comfort, but secondarily, they can be a force used to destigmatize issues that are detrimental to our well-being.

Steele: To me, the biggest detail has been that of comfort. On the other side of that is the stigma. Whatever experience there is, there’s normally some kind of stigma or uncommonness. Think about when the first astronauts went into space and then came back. That was huge. The Crown did a great job of portraying the astronauts. When they came back, everybody wanted to talk to them. They wanted to understand what it was like because this was such an uncommon thing. That uncommonness or peculiarity, a shade of stigma, if you will. These men returned with colds because they were not used to our atmosphere. They were common, boringly ordinary. Everyone else had these images of mountains of men going into space, but when they came back, that myth was broken. The veil was lifted. They were just people, just like everyone else. No matter our experience, it isn’t always what others believe it to be. Our experience is our reality, not anyone else’s imagined reality.

Susie: For those astronauts, we’re looking at them as though they were heroic. Almost God-like, and for many of these Lived Experiences, it’s the opposite; you could even say it’s demonizing. Often it is something someone has no control over. I know it’s been authored by someone else at some point, but the idea comes to my mind that every person is walking around with their own story. Everyone knows something you don’t. I feel like part of what keeps us divided is a lack of personal knowledge of one another.

Lived Experience is important because it brings human knowledge to the forefront of our actions. It allows us to embed human knowledge into every aspect of what we should have been doing all along, in spaces where we see these roles and where we’re doing work for people, like service-oriented spaces. In social justice spaces, in spaces that impact wellbeing and health. This matters because we are providing a new dimension of knowledge. Uniquely human education by those who have walked through whatever it is you’re trying to address. For years we didn’t include those who had experienced mental health issues because we feared we might upset them or cause chaos in their lives. There was this societal idea that they were too delicate. We didn’t understand them or their issues. We didn’t know enough about what mental illness and health actually meant because we didn’t include them and their experiences in our solutions. These individuals have unique insight and can inform us. 

Lived Experience and expertise could comfort. It can destigmatize issues. It can provide unique humane education. But more than anything, it can help us to help others, so they don’t have to go through it alone. I wonder, what matters more than any of these?

Steele: I think that’s perfectly summed up, Susie. I mean, we expect so much more with less. We must start bringing our full selves to the table, experience and all. 

Steele Kelly and Susie [수지] Reynolds Reece


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