Dear Senator Deeds:
Hello from another fellow Virginian. First, I want to extend my deepest condolences for the horrific tragedy that befell your family last year, and for the loss of your precious son Gus. I think I know, at least in part, how agonizing it is when our loved ones cannot access helpful supports, and how it feels to watch in horror as they spiral downward into darkness and despair.
You see, I was born to two people diagnosed with schizophrenia and bipolar disorder. I had the misfortune of spending 30 years of my life watching them steadily decline until they both died quite young. My mother, once a promising young artist and poet, became periodically homeless. She was one of the people we see everywhere in our communities, wandering the streets alone, in filthy clothes, talking back to the terrifying voices she could not make go away. She died at age 46 due to a “passive suicide,” when she refused a simple, life saving medical treatment.
My parents were under some form of Involuntary Outpatient Commitment (IOC) for many years of their lives, and these interventions never helped them to recover. My mother was so traumatized by the coercive “treatments” she was subjected to in state hospitals — including many instances of seclusion and restraint — that she finally rejected even a standard medical procedure that would have saved her life. My father largely complied with his mental health treatment, but he still never had a good quality of life. He never was able to work much, or achieve his dreams. He was largely isolated in his community, and died of toxicity from extreme overmedication at age 63. At the age of 30, I became an orphan. My eight year-old son has no maternal grandparents, and deeply mourns this fact.
And I myself have also struggled with mental health challenges. As a young woman I was frequently suicidal, and spent much of my adolescence in various facilities and institutions. I almost ended up spending my life in a decrepit group home, but I managed to get on a different path — in large part, due to the support of my family and friends, as well as my “peers,” people who have experienced mental health challenges, but have found recovery and hope.
I, like you, want to see much better outcomes for people struggling with mental health challenges, their families, and their communities. I, like you, want to see families and communities be able to easily access the services they need to support individuals with mental health challenges to recover, and to lead meaningful lives.
Perhaps you are convinced that the IOC solutions proposed by the Treatment Advocacy Center will prevent other families from going through the tragedy that yours experienced. Perhaps you think these proposed solutions will prevent another Newtown or Navy Yard. But the fact of the matter is that IOC is costly and won’t lead to the outcomes we want. It is largely perceived as invasive, humiliating, and traumatizing by those under commitment orders.
IOC won’t solve the crisis our nation is facing. It won’t make our communities safer.
I promise you that there is another way. A better way. Let’s work together to transform the way we understand and respond to Americans living with mental health challenges.
For the last 13 years, I have been active in the “mental health recovery movement.” We are the very people that Representative Tim Murphy and others have targeted as “not doing enough for the severely mentally ill.” But that is simply not true. As a direct result of the peer recovery movement, I was able to move from rotting in a filthy group home to earning a graduate degree at Georgetown University, to becoming a mother, to choosing a career as a mental health advocate. I was supposed to be someone who ended up like my parents. I’m grateful that with the right supports, I’ve been able to break the cycle of misery that has gripped my family for decades. I’m just one of many who has broken the cycle. Come learn from us, and with us.
I invite you to watch this short video from the SAMHSA-funded Alternatives Conference that gives you a sense of the vibrancy and hope contained within our movement. Over the last 13 years I have seen people with the most severe diagnoses and symptoms learn not just to survive, but thrive. I have seen people who have gone from being completely non-communicative to leading trainings and supporting others to recover. I have seen people who were written off as “severely mentally ill” go on to have families, jobs, and fulfilling lives.
In Europe, they call us “experts by experience.” We have deep insights into what it feels like to be a patient, what interventions and supports are helpful, and which ones hurt us and cause us to reject help. We reject help not because we “lack insight into our illness,” but because the help that is provided, despite the best intentions of hard-working folks providing services, is often experienced as scary and dehumanizing.
People with personal experience of mental health challenges, psychosis, and suicidal feelings have come up with some of the most exciting innovations in crisis services to date. The “peer-run crisis respite” model allows individuals in crisis to receive support from their peers in a home-like, non-institutional setting in the community. Preliminary evidence suggests that peer-run crisis respite and other recovery-oriented crisis services have helped people to end the revolving door cycle, and to find a way out of suffering. But unfortunately, due to lack of political will, these peer-run crisis respites have not been adequately researched or funded, and there are only a handful of them existing around the country. My vision is that one day, there would be a peer-run crisis respite as well as other voluntary, easily accessible crisis services in every community in this nation. People and families in crisis would know immediately where to go, and they would not be turned away.
In addition to crisis respite, people with lived experience have much to offer. We have developed trainings to help people who hear voices to learn to cope with their voices, and go on to be active members of their communities. We have developed supports for people who have experienced trauma and abuse. These are just a few of the exciting innovations we have to share. We can also provide valuable input into policy, as well as the design and evaluation of programs and services. We want to work collaboratively with lawmakers, administrators, providers, and families to ensure that no one is unable to access supports they want, that no one is ever traumatized by their mental health treatment, and that no one struggling with hearing frightening voices ends up in prison or homeless and wandering the streets. No one would ever have to fall through the cracks again, and our communities would be stronger and more resilient.
We all agree that our mental health systems are broken. Those of us who have been down the hellish road of struggling with our mental health and have found recovery have developed a new vision that will take us forwards, not backwards. Please give us the opportunity to share that new vision with you.
Together, let’s break the cycle of shame, isolation, and suffering. Let’s do it to honor the memory of your dear son Gus, to honor the memory of my beloved parents, to honor all our loved ones who died so tragically and so young, when it could have been avoided. Let’s do it to give hope to families and communities that live in the shadow of fear and grief.
Thank you, Senator Deeds, for taking the time to read this.