Shifting the Paradigm: Putting Trauma-Informed Approaches at the Center of Crisis Response
Keynote Address, National Dialogues on Behavioral Health, 2014, New Orleans
I have a friend, in a major American city, a politically progressive city at that, who was intensely suicidal this year. She wanted help, she desperately did, but she had had traumatic prior experiences before with inpatient hospitalization, and didn’t want to have locked doors slam behind her. She had a WRAP crisis plan, and was going to therapy, and several friends who lived near her, and me, from a distance, agreed to be her supporters. We did everything we could to try to honor her wishes and help keep her out of the hospital. But there were no crisis alternatives – in this major, progressive American city – no crisis alternatives at all. We are all people who are very connected to the mental health world, and if there was something available, we would have known about it. I heard through the grapevine about two crisis respites that don’t advertise, because they simply cannot meet the demand for their services. People have to find them by word of mouth. We called them, but they wouldn’t take her insurance. Weeks went by. We took shifts to support her, but in the end she needed more support than any of us could individually or collectively give, despite our best efforts.
She did end up going inpatient, voluntarily, if you can call it that, because she felt she had no choice. Then, she attempted suicide on the ward. She was secluded and restrained for hours, further harmed, further re-traumatized, by treatment that was supposed to keep her safe.
I tell this story because I think that it is criminal that it should be that difficult to access crisis services, especially in a major American city. It is criminal when the help that does come leaves a person’s dignity bruised and scarred. Treatment should never feel like punishment.
If you look at the state of our country today, we are suffering mentally, physically, and socially. We spend the most money in the world per capita on health care, but have some of the poorest health outcomes of any developed nation. Americans comprise less than 5% of the world’s population, yet we consume 66% of the world’s psychiatric medications, and 80% of the world’s pain medications. More Americans are dying by suicide than in car accidents. More of our veterans have died by suicide than by combat in Iraq and Afghanistan. Since 2009, we have witnessed over 100 mass shootings that have devastated whole communities. We incarcerate more of our people than any other country in the world. These horrible statistics point to a shocking degree of suffering that is connected when viewed through the lens of trauma. Traumatic stress is our national hidden epidemic.
Over my 13 years of experience as an advocate, I have come to see how traumatic stress is at the heart of every single social and public health problem we face in America today. We could save countless lives and dollars by committing ourselves as a nation to addressing trauma. We spend $650 million dollars on brain research, chasing genetic cures that may be 20-30 years off, but we don’t commit anywhere near those dollars to implementing what we know works today.
I think that is the job of each of us in this room, doing the work that we do, to help to enact the culture change that will revolutionize the way we understand and prevent crisis.
Because the personal is the political, I’d like to share some of my story with you. I was born in 1975 to mother was once a bright, creative, beautiful young woman, a promising artist and a poet, who was captivated by the hippie movement. She was a bohemian artist, defying the conventions of our middle-class Jewish Midwestern family, which had carried a tradition of holding emotions inside and acting stoic. One day, soon after my grandparents’ divorce, she left. She hitched a ride to California, and from that point on, was never the same. The police picked her up on a park bench in Arizona, and she was committed for the first time at age 18.
She rotated in and out of mental hospitals, the streets, and jail until her tragic and untimely death at age 46, due to the health complications that come from extreme overmedication and a broken spirit. I live every day still with the trauma of losing my mother so young, so unnecessarily, as so many people die young and unnecessarily in our “systems of care.” The 25 year disparity in life expectancy for people with serious mental health diagnoses is not a statistic for me. It is my legacy. It means that my little boy will never know his grandmother.
I grew up with extreme trauma that came from the very unstable life my mother and I struggled to lead in Inner City Milwaukee. My mother told me that she was encouraged to abort me when she became pregnant, and my family has corroborated her story. My writing this is testament that my mother fought and won against all odds. I might as easily have not been born if she was a more compliant sort of woman. Yay for noncompliance!
But this response – get rid of it – is indicative of the attitudes of the time. The blatant fear of and discrimination against people with this thing called schizophrenia. This thing called mental illness. Things haven’t changed substantially with public attitudes since I was born, despite the money thrown at all the “anti-stigma” campaigns to date.
My mother did the best she could, and though our family tried to help her, she didn’t have enough community support to raise a baby on her own. She hated the disabling side effects of the psych meds, which made her too zonked out to chase around after a little one, and would often take herself off cold-turkey, resulting in withdrawal-induced psychotic experiences that were frightening for us all.
Trauma informed approaches are by definition collaborative and honor a person’s voice and choice. How different things would have been for us, if she had been able to get some support to keep our family together. What if my mother’s wishes to reduce, change, or even withdraw from medication were honored and respected, instead of seen as yet another sign of her “noncompliance?” Her psychiatrist could have worked collaboratively with her to help develop a care plan that would have allowed her to parent me. She could have been offered peer supports for parenting and life needs, skills for managing her overall health, and that of her family. I believe if these were present, they would have helped my mother to break out of the cycle of “noncompliance” and to find recovery.
In nearly a lifetime in and out of public systems, my mother received no emotional support, just medication stabilization and abusive interventions in the name of care. While things are getting better in many places, these kinds of abuses still go on today in many facilities, inpatient and outpatient, in this country. No one ever asked my mother what she needed or wanted out of life. That wasn’t done back then. It’s rarely done now, especially for people diagnosed with serious mental illness, who are seen more often as objects of treatment, rather than collaborators in their own healthcare.
I have an ACE score of 7, and have experienced many of the long-lasting psychological and physical effects that accompany an ACE score of 6 or higher. My memories as a girl are tinged with periodic violence – not at my mother’s hand, but at the hands of police. I remember more than one occasion when my mother was in an altered state, fighting with her voices, and the police broke down our door and dragged her away to the county mental hospital. I remember being 3,4,5 years old, cowering under the bed, terrified of the “men with the black shoes.”
After the courts removed me from my mother’s care at age 5, I went to live in another state with her mother, my maternal grandmother, and her second husband. My mother died inside the day I was taken away, and I too was traumatized by this abrupt separation. From afar, I spent the rest of my life observing her decline, as she more hopeless with every passing year. As my mother deteriorated, I went through my own crisis, multiple suicide attempts, and inpatient hospitalizations. My memories of adolescence are not of the prom, are not of acne and awkward encounters with boys, but of adolescent psych wards and residential treatment facilities where I was denied hope and education and told I was going to be broken for the rest of my life. The traumatic stress I experienced as a little girl was never addressed.
I’ll give you an example of how our systems sometimes uncannily reproduce a person’s original trauma. When I was a struggling teen, I was intensely suicidal and had locked myself in a room with knives. My family didn’t know what else to do, so they called the police. In the same exact scenario as I had experienced with my mother, the police broke down my bedroom door and dragged me off to the psych ward. More re-traumatization.
What has helped with my police trauma, in part, has been the personal connections I have developed with a few amazing CIT trained officers around the country who are trying with all their heart to do things differently. They are exceptional people. But I believe that all of the efforts to create a kinder, gentler police force, while pragmatic, are not getting to the root of the problem. Remember Bob talking about root cause analysis yesterday morning? We as a society need root cause analysis for the way we respond to crisis.
It is our collective failing that police are the first responders, have been forced to take on a role as the new “mental health workers,” in so many of our communities. And when push comes to shove, police are trained to react with violent force if they perceive any threat, no matter how much CIT training they have had, as we saw with the killing of Kajieme Powell this past August. We must collectively work towards creating the kinds of supports in communities so that police involvement with a person in crisis is minimized to the greatest extent possible, where the use of deadly force is brought down to zero everywhere.
One of the things we know about trauma is that it disconnects. It disconnects us from ourselves and from other people. And this disconnection is literally killing us. And we know that trauma is healed in the context of mutual, respectful relationships, which rebuilds trust and a sense of belonging.
We must re-define crisis care, and all care, as a way to assist a person to re-establish connections – with themselves, and with the broader community. Having the best crisis care in the world means nothing if people leave without some kind of ongoing social support. If people leave without a safe and affordable place to live.
I would not be where I am today, out of the disgusting group home where I was told I would have to be for the rest of my life, if it wasn’t for the people who believed in me. My family, who let me leave the group home at the age of 18, on the condition that I finally finish high school. The teacher at the continuation high school for “bad kids,” that I attended, who allowed me to finish my course work on a flexible schedule, and gave me not only accommodations, but endless encouragement. When I graduated from that high school, the staff and teachers were all crying, because so few kids ever earned a diploma. Most went to jail. That could have easily been me.
In community college, I learned about the power of peer support and giving back. My guidance counselor, who knew all about my mental health history, encouraged me to do a work-study program mentoring Vietnam vets who were returning to school. While I was 19 and they were men in their 50s, and on paper we had nothing in common, we connected on a human level. We connected because we were all trauma survivors, trying to figure out how to move forward with our lives and education. And we began to meet for coffee every morning, and we read the newspaper and talked about current events, and we formed an informal community of support on that campus. They will never know how much they helped me as I made the transition from institutionalized youth to student.
In America, illness and wellness are almost always depoliticized and decontextualized. Depression ceases to be an understandable reaction to poverty, marginalization, and our often dehumanizing way of life, and instead becomes a brain disease. People of privilege may feel guilty for being depressed when they “have it all,” but miss the point that regardless of privilege, none of us are immune to the distress caused by our increasingly isolated modes of being. None of us are immune to crushing hopelessness.
In this society, we have a dichotomized response to distress. Suck it up and adjust to what is, or be put somewhere where you will be made to adjust. It is possible to be so focused on individual illness and wellness that we forget the equally important need to work for collective wellness and social justice. In an ideal world, we are both taking care of one other, and working together to change the way things are.
For several years I have been part of a single moms’ support group. This has nothing to do with “mental health,” though many of the moms, myself included, have struggled with deep distress at times. It has to do with “reciprocal care.” We do everything from sharing words of encouragement in tough times; to sharing childcare; to having clothing swaps; to providing information and community resources; to having community potlucks; to organizing meals during illness or tragedy; to giving dating advice; to lending each other suits for job interviews; to accompanying one another to stressful court hearings; to organizing Moms’ Nights Out (MNOs). We also raise money to help other moms who are economically much worse off than we are. We are the village, created out of a common need. I want to say that this network prevented me from going into crisis on more than one occasion, when the burden of being a single mom living under severe stress of all kinds felt like too much to bear. This kind of network costs no money, you don’t need to bill Medicaid for it, and it’s the hope of what care can truly be. What can we do to help build these kinds of support systems in each of our communities?
A liberating notion of care would follow from the understanding that most of us need other people. We need truly safe relationships in our everyday lives where we can be vulnerable and real, and let the masks of “keeping it together” fall away. A redefined notion of care would presuppose that we as individuals are all deeply interconnected. The “burden of healing” would be spread around, rather than placed squarely on our individual shoulders.
I do believe that part of the paradigm shift is that we need peer to peer support networks everywhere, which can also be translated as “community.” Survivors have designed hearing voices networks by and for people who struggle to cope with voices and visions, as well as peer support groups for people struggling with suicide and trauma. These are hugely important, but they exist only in a handful of places. What would it look like in terms “prevention” if we had broader networks of community support than what we currently have now? Networks for people coming out of the criminal justice system, to help one another to navigate the transition? Student groups on campuses could be a safe place to share resources, skills, and support, and to advocate together to improve the availability of support for all students on campus. Teachers could form support networks to deal with the challenges of being educators in public systems with dwindling resources, and find ways together to meet their own needs, as well as the needs of the children and families they work with. Neighbors could form networks to provide emotional support to one another, while also addressing their practical community issues.
You, as crisis service providers, I am guessing, need way more support than you are currently getting doing the work that you do every day, with massive expectations and often with far too few resources to make the kind of difference you know is possible. I would encourage everyone here, if you aren’t doing this already, to think about the kinds of community that you, personally, can help build when you go home.
Here is the revolution I want to see: I want people everywhere to have access to the kind of social support and care that doesn’t require a diagnosis or insurance billing code or involve scheduling an appointment four-six weeks from now or having to take a ride in the back of a police car to get help. If we knew how much power we, everyday people, had to care with and for each other, I believe that we could prevent all manner of crises. As we all know, it is so often when people’s basic human needs for shelter, purpose, and social connections are not met, that crisis happens.
I do what I do every day because the personal is the political. And what you do is also personal and political. We must put our heads together, collectively, to better share the best ideas we have for building a range of community health alternatives to our current and all too often inadequate “systems of care.”
Change so often requires social and political will. And some of the kinds of changes I see being proposed on the federal level, working for the National Coalition for Mental Health Recovery in DC, are not the right direction for our country. Mental health legislation introduced in the last Congress, the Helping Families in Mental Health Crisis Act, introduced by Congressman Tim Murphy in December of 2013, in response to Sandy Hook, would roll back the clock 30 years. This bill would expand and provide block grant funding for more forms of coercion and outpatient commitment to the system, and aggressively create more hospital beds, while eviscerating the protection and advocacy systems that were designed to protect folks from abuse and neglect in institutional settings. It would erode our privacy rights and yank federal funding for innovative peer-run and recovery oriented programs. We don’t know the fate of this legislation, but it will likely be re-introduced in some form in the next Congress.
I know that you are all overworked and underfunded, but I ask you to take political action. Please make the time to contact your legislators and tell them that what we need is not more coercion but more voluntary forms of community support and diversion. Tell them what you think needs to be done to better promote healing and recovery for people and to prevent trauma and end criminalization, the revolving door cycle, and early mortality. Please tell them how important peer support is to the folks you work with and that it needs to be preserved and expanded. If we are going to move these systems, and our society, in the right direction, and bring the inspiring visions in this room to scale, we are going to have to fight for it – together.