How many conversations have there been about including individuals with lived (and living) experience(s) over the years? 

As a field, the mental health space has prescribed answers for those of us with mental health conditions. What is sometimes overlooked is this included deciding how those of us with these conditions were allowed to show up in the efforts and activities that make up the fields of work that address these issues. This meant that professionals decided what was best for individuals and how we were included rather, excluded from the work. The remnants of these decisions persist all around us. Many of our practices other or abnormalize what many of us experience as everyday realities. I have found my personhood decentered by those who have never experienced my issues more times than I could bear to count. 

During the time decisions were being made about whether and how we should be involved, many professionals in the field viewed individuals with lived experience as merely patients or clients. We needed their guidance and clinical expertise, and they were charged with diagnosing and determining our solutions. There is a paternal aspect there. A sense that we couldn’t decide on our own and needed others to dictate what was best for us. We were the recipients of care decisions, but did not have the agency or ability to choose for ourselves. This is the framework of how these fields were established. 

Back then, because these professionals don’t often see us on our best days, there was this fear of putting people in situations where those best days may never happen. Could they potentially create spaces of harm by letting those of us who needed solutions be in efforts focused on harm? Were they creating spaces where individuals might harbor wounds that never healed? What is the risk? It was immeasurable and barely conceivable. It seemed that the concern for risk outweighed the possibility of healing. 

I can understand the sense of care. I can appreciate wanting to provide security and safety. I can be grateful that others were considering what could cause me harm. I feel that we have a tendency to view things singularly when humanity and our issues are anything but one-dimensional in nature. I imagine these conversations were tense and tinged with fear. I would hope that at the center was the desire to ensure wellness. That at the end of the day, these professionals were consummate caregivers who gave these conversations all the care possible.

But it’s limiting as an individual to be considered incapable before we’ve had an honest chance. Prescriptive Exclusion doesn’t allow for other possibilities or outcomes. It centers caregivers as the drivers of work and efforts, relegating the recipients of this caring prohibition to the sidelines. Where we wait eagerly to receive what is handed over, hoping it is what we have needed all along.

I’ve had dark days in my life, and those days have definitely not felt like ones I could escape. I’ve been unexplainably sad or depressed and have struggled to find the energy even to eat. Still, I’ve also had immensely wonderful days. Many of those days have passed since I started working in substance use and suicide prevention. I’ve been able to find my voice, become empowered, and do something innately good. I’ve done well both in my work and for myself. Because of the days when I’ve advocated, created, and implemented, I’ve found power and been able to reflect on and understand myself more fully. I have learned what I am capable of, and the more opportunities I have, the more I see myself achieving things I wouldn’t have imagined otherwise.

The space itself has created some of these issues because people who have experienced the truths of these issues haven’t been included. When we look at the prevalence of problems like suicide as one example, we see an increase in losses and attempts over a span of the past several years. So many of us in these fields work tirelessly to decrease this pain at scale, but by excluding those who intimately understand the pain, I wonder what answers are intrinsically missing from this work? 

I see conversations of hope and healing time and again. These concepts permeate promotional campaigns. Have hope. You can heal. Everything will be okay. Everything will work out. But sometimes, sometimes things just utterly suck. Our fields are almost fearful of the dark realities that we are all working to address. I’ve been involved in so many conversations where people wondered if we should mention death or pain or the hard, harsh pain. It’s as though they fear mentioning these things will somehow worsen the worst experiences of some people’s lives. How many of us have had our fill of hope when we were in the throes of depression? How many of us have told hope to F*ck off? It should be both. It should be balanced but honest. We cannot continue to omit the overwhelming. Depression is depressing. Substance misuse and abuse kill. These are not easy, hopeful pains. They are hope-stealing thieves. 

But the spaces where those of us who have felt, seen, and experienced – are places where connection happens in ways I don’t see everywhere else. We’ve skirted the edges of the fields, slipping in as storytellers, trauma mascots, and woeful warnings, but I do not believe the strength of our resolve and true capacity to help has been welcomed into the heart of the work. Our ability to hold deep and meaningful dialogues. Our willingness to sit in discomfort. Our passion to put it all out there. These are a few of the things we bring with us. 

Including us reshapes the space from one where we were told we weren’t allowed to contribute to one where we can all examine what has kept us here, when everything in the world and our heads wanted us not to exist. We persevered against the odds and ourselves. We fought, and fought, and fought when we had no fight left. What would happen if we bottled our winning battles up and used them as solutions? 

I know that allowing us to help ourselves and others enables us to lead innovation, but that means challenging things that have been done in very specific ways for quite some time now. If we were to lead ourselves from our darkness into the light, would that upend the systems of care that were built to hand down help? Could that reshape who we listen to and learn from? Could it also influence our ability to solve these seemingly unsolvable problems? 

Should these questions curb us from taking a chance that maybe, just maybe, those of us who have lived through it could also fix it?