This week’s post is by Cheryl Sharp:
I sometimes hesitate to put in my 2 cents worth because I do work for a large organization that has the voices of lived experience involved but was, admittedly, pretty late to do so in leadership positions.
While my specific work is based on the voices of trauma survivors, my experience is as a trauma and attempt survivor. I want to address the idea of “who’s ready for prime time” in speaking about their personal experience.
I work as the senior advisor for trauma-informed services. In these efforts, I work with behavioral health and other human service organizations to think about their work coming from a trauma-informed perspective. This means that there is knowledge of the prevalence and impact of trauma across the life span, an understanding that “symptoms are adaptation” and that all behavior has meaning.
This also means that a person who has attempted suicide is significantly more likely to have experienced traumatic life events.
We also strive to ensure that every person who works with others recognizes that they can make a difference in the lives of those who receive services.
In that work, agencies participating in our learning communities are expected to have the voice of lived experience on their teams. This is an area where there is often great intent but very little “know-how.”
This is frequently a two-way street in that the organizational leadership is afraid of doing harm, not sure what is “appropriate” for participation, concerned about HIPAA when working with those who are currently receiving services and not sure how to use those voices to impact real change.
There is also tokenism that occurs, and that’s why we request that in a team of five, we ask that there be at least two survivors. Teams are asked to have standing agendas that provide a platform for those voices to be heard, and survivors are encouraged to bring their own agenda items.
For so many of us who might be unfamiliar with having our voices listened to, there can also be a level of intimidation at even being asked to serve on a committee or a team.
For me, even after graduate school, I was overwhelmed by policy, procedure and those danged acronyms. I frequently felt I was living in a world that was filled with alphabet soup and I was frequently “brain drained” by it. I was fortunate to have a very savvy peer leader who would talk with me after every meeting to help me sort out what was actually occurring in the meeting.
Learning to say, “Hold on, folks, I am trying to keep up and understand” and not feel like I was stupid took a long time.
Learning how to share my message so that it was the most impactful was also a challenge. I have been in many workshops, conferences and meetings where people did not know what or how to share without giving up the message or silencing their voice.
I am not one for people having a “canned speech;” they are too easy to spot. But for people to have enough sense of themselves, of what to share and whom to share it with, is important, as well as knowing what the consequences are for “letting it all hang out.”
I remember when I first started speaking publicly about my experiences. Frequently afterwards, I would feel like throwing up and would have acute anxiety. Sometimes my concern was whether I over-shared (not so much for the audience, but what was safe for me), or if I actually hit the mark on the important aspects.
This might sound weird, but some things that have been helpful to me since then have been taking a Forensic Speech class or dissecting powerful oratory to determine what makes an effective presentation. I have also taken public speaking.
That being said, at the end of the day it is just me and those one or two audience members for whom my message makes a difference.
Some of us still do not understand that our speechifying/testimony/advocacy efforts are not about our cathartic experience but about effecting change. To those who have thrown themselves to the wolves for the benefit of the rest of us, I humbly thank you.
What I mean by this is that many of us who have shared our lived experiences have been ostracized, stigmatized and marginalized for doing so. We are frequently looked at as “not quite like everyone else.” It takes tremendous courage to allow oneself to be vulnerable and to show the world that we are not “other,” but are simply people who have experienced and survived great challenges.
I was failed miserably by the mental health system. I have reflected a lot on how we are listened to. I started sharing my experiences very early in life, in my mid-20s (I’m gray-haired now), long before I received my education. I went to school in order to understand what I never wanted to do in practice. I felt I needed to understand the system if I wanted to be part of changing it.
When I finally made it to college, I was already very vocal about the system, its failures and the re-traumatization I experienced. This was long before I knew there was a consumer/survivor/peer movement. I did not know to be afraid about telling the truth or about talking about alternatives to treatment.
I had to work extremely hard to study what was important to me: transpersonal psychology, spirituality and mental health, psychoses as a transformational experience. I was a horrible student in high school (it’s hard to learn when you live in distress, isolation and loneliness) but as a late learner, I did very well. I was fortunate that I was allowed to direct my course of study at a time when that was unheard of.
All of that being said, I experienced tremendous pushback in graduate school about how inappropriate I was for speaking from lived experience. In my Guild there is no guideline regarding personal disclosure, ethical guidelines regarding boundaries. I did not find my way until I discovered the survivor movement, where my voice and my experiences were valued.
In my current work, I do know that my experience counts; I am listened to, and I do not feel like I am a token anything. I don’t always get my way, don’t always make the changes at the pace I want to make them, but I have seen amazing change.
As slow as it has been, I never dreamed that someone like me would be where I am in life. I never dreamed that people like me would actually be running the programs. When I am out doing my work around trauma and trauma-informed care, what I know is that it opens people up to a different type of conversation.
It never fails that people (clinicians, providers) come out as trauma survivors.
We need to craft our messaging in such a way that we build a bridge between our audiences and our experiences. Not everyone has experienced the desperation we have when we attempt to take our own lives, but I do know that people can connect around feeling hopeless, helpless and locked in a corner with no way out.
I am wondering if we, as a community, might develop something that would help organizations/agencies understand the how, when, what, why and where around using the survivor voice. I would also like to see some guidelines/suggestions for those who are considering using their stories. Just a thought.
All the best to the bravest people I know: Those of us who still know that life is a choice and often hang by a precarious thread. You keep making that choice to put one foot in front of the other, hoping for a better tomorrow.