First they ignore you,
Then they laugh at you,
Then they fight you,
Then you win.”
— Mahatma Gandhi
As I walked alone up the stairs to the Rayburn House Office Building this morning to attend the hearing of the Energy and Commerce Subcommittee on Health on H.R. 3717 – the Helping Families in Mental Health Crisis Act – I thought about how I wasn’t truly alone. In spirit with me were all the people who had experienced scary, coercive, and dehumanizing interventions in the name of help. In spirit with me were all the well-intentioned family members who didn’t want to force treatment on their loved ones, but didn’t have access to or know about alternative voluntary, recovery-oriented community resources. In spirit with me was every mental health provider who went into the field hoping to really make a difference in their communities, but became cynical and discouraged in the face of so many broken systems and broken spirits.
These are dark times we find ourselves in. People with mental health histories are being scapegoated as the cause of the complex problem of violence in our nation. This bill signifies one of the most frightening attacks on the civil rights and human dignity of people with mental health challenges that we have seen in three decades, of that there is no doubt. I won’t give a detailed report of the hearing itself; I won’t go into detail about how Representative Murphy viciously bullied and attacked the people whose views were different from his; you can experience it for yourself here. What I would like to do is to share some impressions, and some reasons for us to be hopeful in this challenging time.
As one can tell by reading the witness testimony and watching the proceedings, the hearing today closely mirrored the impassioned national debate that is currently raging about one of the most contentious issues in health care: the use of coercive interventions in mental health treatment.
For decades, the recipients of forced treatment have been largely ignored in the various public debates about us. We have cried (often into the wilderness) that force is wrong, that it hurts people, and that it is a violation of civil and human rights. But rarely has concern about the use of force occupied the national stage in the way that it does today. (Perhaps we have Murphy to thank for that.)
To me, this is a hopeful development. It shows that we are slowly chipping away at the what I call the “anosognosic fallacy:” the very scientific-sounding, yet unsupported idea that some people “lack insight into their illness;” that a small handful of these people may possibly in the future be a threat to public safety; and thus, they must receive court-ordered treatment “for their own good.” The fact that several Congresspersons could articulate that the bill’s provisions around force were troubling represents a major victory of our civil/human rights and advocacy movements.
Representative Murphy and others at the hearing talked about the tragic situation we find today, where people with mental health challenges are warehoused in jails or wandering the streets alone. But the people who ended up in these horrible conditions did not simply arrive there overnight. Somewhere along the line, they were let down. De-institutionalization policies are typically blamed for this, but as we know they are not the only cause. People in every community in our country are let down every day by exposure to poverty, racism, sexism, homophobia, trans-phobia, homelessness, and violence; by patterns of abuse in their families due to unhealed intergenerational trauma; by accessing terrible treatment they were not likely to want to re-experience; by not being able to access any support at all; or by being discriminated against and treated as “less-than” because they had a trauma history or a psychiatric diagnosis. It is tempting, and convenient, to slap a forced-treatment band-aid onto the festering wound of these intersecting oppressions. But beneath, the wound will still continue to seethe.
My heart went out to the witness from the National Alliance on Mental Illness (NAMI) who described her mother’s tortured descent into madness. The witness arrived at the conclusion that forced treatment could have saved her mother. I have seen this horror with my very own mother, who was compelled to seek treatment for her voices and visions, but found it destroyed her body and soul. I came up to this woman after the meeting and introduced myself, daughter to daughter. I told her my story and said, “you know, we are not so different, though we are on opposite sides of the fence on this bill. We both saw our parents destroyed. You feel your mother was destroyed by lack of access to services, and I know that coercive systems of care played a significant role in my mother’s death. Can we agree that force isn’t the answer?” To my surprise, she agreed that what we should really be focusing on are expanding options for support for all people. And here is an example of how we can find common ground for collaboration amidst the extremists who call for forced treatment in mental health as the answer to our pressing social problems.
Let’s face it: we probably aren’t going to change the minds of the Tim Murphys of this world. He is determined to discredit the expertise of anyone who does not possess an M.D.
Murphy’s demonization of the Alternatives Conference, a vibrant federally-funded gathering of people who once met the criteria for serious mental illness but have found recovery and vital meaning in helping others to recover, signifies that we are, as Dr. Daniel B. Fisher pointed out here, at the “fighting” stage of the four-step process of social change articulated by Gandhi above. Which, as we all know, is followed by the winning stage.
But we have to do a better job of reaching the hearts and minds of Americans. The fact that the Tim Murphys of the world can dismiss the movement of persons with lived experience of mental health challenges as a bunch of fringe crackpots who want to prevent people and families in crisis from getting support, is evidence of a major communication failure on our part. For too long, we who have been traumatized by abusive families and/or abusive systems have shrunk from fully engaging with families and providers. We talk amongst ourselves about what is wrong, and we are right. But we can’t win this fight alone.
Let’s each of us spend some time winning over some hearts and minds. Let’s talk to people we don’t usually talk to. Let’s engage, engage, engage with our legislators. Let’s engage with all media. Let’s share our human stories with them. What we have on our side is hope in a hopeless time, creativity in a narrow-minded age. Let’s share our hopeful stories about how we regained our lives after our descents into hell. Let’s keep sharing stories about the gifts we have to offer to this world: real, community-based alternatives to force and coercion. Ways that we can really support families in crisis. Voluntary crisis supports such as peer-run crisis respites. Innovative approaches for persons with experiences of psychosis like the Hearing Voices groups, Open Dialogue, or the in-home supports offered by the Family Care Foundation in Sweden. People with experiences of suicide supporting one another to live another day. But these amazing innovations are accessible to so few. We need to be a vital part of creating hope-based policies to create hope-based supports everywhere for struggling families and their communities.
There is no doubt: we are winning. But we can win faster if we cultivate more allies. Family members are not the enemy. Even the dreaded “mental health systems” are not the enemy. Ignorance and fear are our true enemies. These are what drive “shockingly regressive” legislation like H.R. 3717. Ignorance and fear drive force, discrimination, and destructive attitudes towards people with psychiatric histories. Persons with lived experience and our allies can do much to defeat these enemies by sharing our stories, sharing what we have to offer, and building the relationships with “the other side” that will make all the difference in this fight.
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