Lived Experience Must Get A Fair Hearing

As we speak, Congress is considering sweeping legislation on public mental health policy.  (The Murphy Bill, HR 2646) Yet, to date, there has been no sincere effort to invite and seek to understand the worldviews of those of us with lived experience. At the very least - and regardless of what ultimately is decided - Congress has no business making any decisions about federal mental health policy until it hears from us. We are the citizens who are going to be the most affected by whatever policies they enact. We are going to personally suffer - or watch people and causes we have given our lives to suffer - if the politicians in Washington get it wrong.

Equally important, we are the only source of truly first-hand, insider information as to what might work and what probably won't. We are the ones with the actual skin in - who are living these issues, putting our heart and souls into finding solutions for these issues, and doing this work on the ground every day. Not just because we care, but because our lives and survival depend on it. We therefore are uniquely qualified to offer meaningful opinions - and to speak - with the full benefit of hindsight based on our own actual lived experience. There is no one else who knows better than us what has engaged and what will offend, what will save lives, promote resilience and make genuine well-being possible. Similarly, no one knows better than our community what approaches will hinder, cause harm, and only lead to more wasted dollars, effort, suffering and death.

In any political system worthy of the name democracy - and as a national body that dares to hold itself out as 'representative' - Congress simply has no business deciding national mental health policy without hearing from the peer community. That they would presume to do so - and without the slightest consciousness that our voices have been omitted - just goes to show how deeply ingrained the prejudice and social exclusion of our people has become.

So here's the basic message:

Before Congress makes any decisions about mental health policy, those of us who have lived with or survived a mental health label want real hearings.  Our voice must be heard. Congress must hold fair hearings.  Our elected representatives must actively invite and include our lived experience, views and expertise in the conversation. Anything less violates fundamental fairness and is terrible public policy.

Hearing from people with lived experience is critical not just in terms of literal message.  It is essential to correct the harmful public image that politicians and the media have propagated about our people.  There are hundreds, if not thousands, of people with lived experience around the country who are capable of testifying for our cause in a cogent, respectful articulate matter. It is critical to our cause not only for Congress and the media - but for the entire American public - to see this. Right now, the only images the public sees - ostensibly representing us - are what the news media feeds them of another mass shooting and the political speeches vilifying us that inevitably follow.  This may get votes.  It may sell advertising.  But it has nothing to do with who we are, what we stand for, or what we want as American citizens or human beings.  Shame, shame, shame on a nation that would decide the fate - and effectively act to segregate - of body of people it has never bothered to get to know.