Not talking about the caucus winner here. Talking about a pair of grass-roots Iowans, my friends Leslie and Scott Carpenter, mental-health advocates who fit every definition of “everyday heroes.”
The parents of a schizophrenia-afflicted son brutalized by our broken treatment systems, Leslie and Scott have carried on a tireless crusade for reform that has extended more than ten years. Often they struggled in obscurity, and against indifference, until the Iowa caucuses brought the Democratic presidential candidates to their doorstep.
Their work in spreading the reform messages directly to the candidates has placed them at the center of a widening national movement to end the many atrocities of our treatment and criminal-justice systems, and the candidates are listening. I will let Leslie pick up the story here, and close by saying that these two luminous people embody the concept of “hope.”
Well, not “no one.” Still, the levels of ignorance, too often coupled with hostility or sheer meanness, remain unacceptably high in this country. We in what I’ve called “the sub-nation” must never assume that the people we encounter will have even a working knowledge of severe mental illness: not a relative, a next-door neighbor, a caregiver, a police officer, a stranger in the park or on the street–not even the President of the United States.
Below are three recent bits of evidence that prove my point. The first is the text of a Facebook post by Scott Carpenter, a leading reform advocate based in Iowa.
Scott and his wife Leslie, who have seen a family member stricken, are among the strongest voices in America for what needs to be done. Yet not even they are immune from incidents of unexpected and bewildering hatefulness:
An elderly man walks [up to me] and says that ‘the problem isn’t about guns. It’s about crazy people.’
Leslie (against my advice to not engage) indicates that we have a son who has a serious mental illness and that he should come listen to he comments in an hour or so. He declined.
Then he said, ‘your son and all of the crazy people should be taken out in a field and shot. That way they could be useful as fertilizer’.
Please don’t ever think that a day of activism is easy.
Scott J. Carpenter”
When you have caught your breath from that, please follow the two links below.
The first link is to some remarks that President Trump made to campaign workers before a political rally in New Hampshire, in which he continues his strange and uninformed characterization of the mentally ill as, collectively, a horde of depraved killers that must be rounded up and swept into asylums. This and other tirades show that Trump knows nothing about insanity and cares less: his real agenda is deflecting attention from the ongoing mass-shooting crisis: The article leaves no doubt about this:
“Trump said many other Republican leaders and the public don’t want ‘insane people, dangerous people, bad people’ owning guns.”
“Words matter, Mr. President. ‘These people’ are our friends, neighbors, children, spouses. They’re not ‘monsters,’ ‘the mentally ill’ or ‘crazy people’ – they’re us. Talking about reinstitutionalization only further marginalizes and isolates the one in five people with mental illness. Instead, we need to be talking about the power of early treatment and effective intervention to change lives.”
These are but a couple of examples of incidents and attitudes that repeat themselves daily in America. They underscore the urgency of the seminal five-part manifesto organized by advocate Dede Ranahan and made widely available online and to presidential candidates last week. (Ranahan’s mentally ill son Patrick died in an institution in 2014.) The lessons in Ranahan’s great document are many and vital.
What I have outlined above constitutes just one. It is at once tiresomely repetitive and freshly urgent: We can never assume that any given individual–not even our Chief Executive–knows much about crazy people. And we must work relentlessly to change that.
P.S. Mental healthcare advocates Scott and Leslie Carpenter discussed the challenges they experienced when seeking proper care for their son Patrick during an interview withThe De Moines Register. What they share is both heartbreaking and informative. I encourage you to take a few moments to watch their interviews below to better understand how mental healthcare policies and procedures often fail to provide effective or compassionate care to the mentally ill. If you would like to share your own experiences of mental healthcare for yourself or a loved one, I invite you to comment below.
Stories from the front lines of Iowa’s mental health crisis
Below is the text of the talk I delivered to the 2018 conference of Pathways to Hope in San Antonio on Friday. Pathways is an exemplary nonprofit outreach organization that has set new standards for reclaiming and treating victims of mental illness and addiction.
Because of a last-minute scheduling conflict, the venue for my talk was shifted from an auditorium furnished with audio-visual recording equipment to one that lacked same.
In one sense, that is a good thing: people who are curious about what I had to say can find out without having to watch the image of my homely mug flapping its gums for half an hour.
In another, it is not so great.
I’d designed this talk as a forceful message—a call to arms, if you like—not only for the Pathways attendees but as a video document that could be distributed on the Internet to advocacy groups around the country, to access stations in towns and cities, to educational and religious groups, to judges and the law-enforcement community, and to state and federal political leaders with the power of policy-setting over our country’s broken mental-healthcare system.
My talk includes a look into the broken lives of two sufferers whose hellish plight epitomizes the rank obscenity of the ignorance, indifference, and neglect at the extreme edges of our judicial and municipal authorities. These victims’ images and encapsulated stories may be found near the end of my talk.
Finally, my remarks conclude with two proposals that will be difficult to achieve and can be fulfilled only via a sustained and broad-based outpouring of activist passion. One proposal is the enshrinement of mental-illness reform as the predominant civil-rights issue of our time. The other is the establishment of a new Cabinet-level federal department: the Department of Mental Healthcare.
I cannot overstate the urgency I feel for the necessity of these goals, and for our sustained witness of those unfortunate people who exemplify the atrocities in our dealings with the insane. Nor can I overstate the frustration I feel (I seldom mention this) at the societal inertia that enshrouds progress and muffles the voices of reform.
I realize that the remarks below are not for everyone. Except that they are.
TEXT OF MY TALK TO THE PATHWAYS TO HOPE CONFERENCE, AUGUST 24, SAN ANTONIO, TEXAS
My wife Honoree and I would like to thank you members of Pathways to Hope for inviting us to this enlightened and important conference.
We are grateful in particular to your inspirational president, Doug Beach; his associate the Rev. Carol Morehead, and their All-star array of board members. Including your great county judge Nelson Wolff, who has so brightly illuminated your path.
You have reached out to a couple of chilly Yankees from the People’s Democratic Republic of Vermont—and got us down here to enjoy a little sunny weather.
Honoree was actually kind of rattled yesterday when I read her the temperature here. I told her not to worry; it would probably warm up.
I hope you know how special you are. Three years ago Pathways to Hope did not exist. Today, you are a piston in a great city’s emergence as a dynamo of human reclamation: the reclamation of the most helpless and vulnerable and overlooked people among us. I speak of those who have been stricken with mental illness.
And I speak of the families and friends who have interrupted their lives and often their livelihoods to protect them.
Something big is going on here in San Antonio and Bexar County. Has been for a while. At about the time Pathways was getting organized, in December 2016, the Boston Globe had this to say about the civic revolution you were joining:
“San Antonio has done in Texas what Massachusetts has not come close to: making mental health care a community priority, a real system built with creativity, humanity, and sustained commitment. A national model, saving lives and money.”
And you are now a central part of this. Your work embodies what has come to be known as “the San Antonio way.”
Let’s examine what “the San Antonio way” means, for the benefit of those who are not aware of it.
It means a great and rare coming together. A spontaneous combustion of civic will that rebukes our long national apathy toward mental health reform. A galvanizing of public agencies and private businesses and healthcare providers and churches and ordinary people—teachers, volunteers, and victims of mental illness themselves. A drive to finally seize control of our broken care and judicial and enforcement systems that too often intervene in the shattered lives of afflicted people only to make things worse.
San Antonio has said “Enough of this! Let us intervene in these systems and rebuild them from the grass roots up!
And let me be more specific still:
In this city it has meant creating special mental health units within the police force: handpicked officers who are rigorously trained to ease themselves into crisis situations and tamp down psychotic behavior, using words and gestures instead of guns. Incredibly important!
It has meant achieving national prominence in the practice of jail diversion. Gilbert Gonzalez and his Bexar County mental health staff have used jail diversion to identify more than 20,000 people with serious mental illness and divert them from jail into treatment. It has saved Bexar County more than fifty million dollars and counting!
That is just incredible! Cost-efficient—and more importantly, humane! Why is the San Antonio Way not the American Way?
I want to help make that happen!
My tools are limited. I’m a bereaved father and a writer—not a policy-maker or a neuroscientist or the leader of a great movement. Just a writer.
But as Elie Weisel said, “Words can sometimes, in moments of grace, attain the quality of deeds.”
So let me pray for grace, and not mince words.
American mental health care today is in a crisis.
I will speak to you of this crisis, but I also want to speak through you . . . to all those Americans, good and solid citizens, who may not yet have been poked and prodded to see our mental illness crisis for what it really is.
It is a crisis that takes many forms:
It is a landscape . . . a landscape of humiliation and grief and ignorance and shame. A hell on earth for too many of the most helpless, the most dispossessed, the most misunderstood, the most feared, and too often the most brutally confined and punished for the crime of existing while insane.
The crisis is a graveyard . . . a graveyard of hope, where we bury our complacent myths of compassion and loving community. These qualities are just not evident in society’s dealings with the mentally ill.
And all too often, it is a literal graveyard—where we bury the bodies of our brothers and sisters—our sons and our daughters—whose lives have been needlessly sacrificed to the appalling indifference and outright cluelessness of the very institutions designed to protect them.
The crisis is a swampland: an economic swampland whose quicksand drains and drains our national treasury. America spends about as much as any country on mental healthcare. Around $230 billion a year, in federal, state, local and private funds. That is nearly twice the amount spent in 2012.
And we spend it worse than just about any country.
The great advocate and my friend Dj Jaffe lays it on the line: our government, spurred by lobbyists, pours money into treating high-functioning patients and on treatments that lack evidence.
I know that Pathways to Hope reaches out beyond the borders of chronic mental illness to help those with behavioral and addictive issues, and simple bad luck. Yet you take care of the core group, the chronically insane, as well.
But at the national level, Jaffe and others have a point.
The powerful blogger Pete Earley adds that we squander even more money by over-spending on emergency systems: jails and prisons, for example. Meanwhile, state mental hospitals are being closed.
Politicians love to build jails because voters think jails keep them safer. Politicians love to close hospitals because voters think this will save them tax money.
This gets it exactly backwards: housing an inmate with mental illness in jail costs $31,000 annually, while state and community mental health services cost about $10,000.
Folks, America is getting fleeced! And America can’t or won’t see it! And so it goes on: a jail is built. A hospital closes. Fewer beds. less care, treatment, and medication. But more cells. And hundreds of thousands of chronically ill people—bipolar and schizophrenia sufferers—go untreated because the money doesn’t stretch to them.
Now I want to move to an area of spending on mental illness that is even less examined than the squandering of public dollars—but is perhaps even more catastrophic and dangerous to our social fabric down at Ground Zero.
I’m talking about the uncounted millions of dollars sacrificed each year by private households. By families. By parents who have no choice but to empty their bank accounts and their life savings, and often quit their jobs, to protect an afflicted child from going under.
I can’t give you statistics. There are no reliable statistics; not yet.
But I can tell you a couple of stories. Stories that represent hundreds of thousands of similar stories. Stories that I use with permission from the mothers and wives who shared them on a private Facebook site.
“I have no way to go back and detail the cost to me and my family. I can say that the cost was tremendous. The expenses of traveling to the hospitals, the days lost at work because I had to be in the emergency room, or at a treatment team meeting, or in court. These things caused me to lose my job. More than once. So, how do you account for that? Thousands? Tens of thousands? And this is not counting paying for attorneys and doctors, neurologists and neuropsychologists. And medicine! And a locked safe to keep the medicine.
It’s tremendous, just a tremendous reality.”
This mother concludes:
“I retired way early because I am not able to work anymore.”
Here’s another, from the wife of an afflicted husband:
“Many years of paying rent and utilities before finally getting public assistance. Raising his children while his ex-wife recovered from breakdown due to his illness. Full time work cut to very part time, so I could be there for the grandchildren and to advocate endlessly for any kind of help.
Early retirement related to my own stress. Retirement pension a third of what it should have been. Paying for others to clean his apartments. Automobiles totaled at least twice. Expenses to keep him out of jail. Paying others to shovel out his filthy apartments so he doesn’t have his section 8 housing taken away. Vet bills for his dog. Transportation costs numerous times to get him home from yet another place he’s run away to. The long-term financial repercussions have been devastating.”
I think these two examples give us enough to think about. Or should.
So let’s move from the crisis of foolish spending into the crises of our hospitals, our caregivers, and criminal justice system itself.
America harbors two million, three hundred thousand incarcerated citizens at any given time. One-point-three million in state prisons. A little over half are serving time for violent crimes. The rest are in for property theft and drug convictions, and they should be somewhere else. Treatment, supervised community service. More humane, less expensive.
But no: lock ‘em up.
Jails and prisons breed psychosis like the Tropics breed mosquitos and grass breeds ticks. The Kaiser Foundation estimates that about eighteen percent of these populations live with serious mental illness. Serious meaning chronic. Incurable. Leaving the victim essentially helpless. I’m talking about schizophrenia. Bipolar affliction. And the rest of that happy little family. That amounts to three hundred eighty-three thousand insane inmates. Or about ten times the number of patients in our dwindling state hospitals.
I think everybody here can recite the following sentence in their sleep: “We are criminalizing mental illness.”
And yet, with the exceptions of certain oases such as San Antonio, we just keep on doing it.
We buy ever more cells, but never enough, and more solitary confinement: in my opinion, the cruelest, most unethical, most psychologically damaging and most worthless form of legalized torture in our criminal-justice system. Think of the descriptive nicknames: “The box.” “The hole.”
Yet jail inmates, most of whom have not been convicted of anything, keep getting shoved into solitary. Why? Because it’s there. A handy space in an over-crowded jail. And why are jails over-crowded? Mainly because of the stream of mentally ill kids who do not belong there. But are crowded out of hospitals.
Time in the box deepens psychosis. In Florida two years ago, a psychotic young man who’d been in solitary for two years tore off his penis with his bare hands.
One in eight jail prisoners in Florida lives in solitary. One in eight! About twelve thousand total. Out of eighty to a hundred thousand American inmates at any given time.
And the circle goes round and round. And solitary confinement goes on and on and on. Why? Because there is no substantial reform movement. So most Americans hardly ever give it a thought.
Solitary confinement is a national disgrace, and it must be abolished!
A couple more stories now. Stories have a moral force that statistics usually lack.
This from a mother whose brain-damaged son did some time in jail:
“First of all, everyone said that he should not be there. Doctors and other staff. It was known that he needed a real neuro psychological environment. To sum up years of suffering: The state knew, the state hospital knew, and no one did anything until I threatened a lawsuit, even then nothing, until I caught the division in a big lie with a brain injury facility.
The lack of training is unbelievable. State hospital employees don’t keep up with new findings, because they are not encouraged to do so. When I did find a good person, I made sure to tell the top administrator. Then that person was actually told not to talk to me anymore. Yes, buck passing and leaving my son to be secluded for years. I truly believe that the disdain is the word that tells our story. I would say to staff, ‘How can you sleep at night?’”
Listen to this message from the mother of a young psychotic son:
“One of the most shocking remarks said to me was when I tried to get our local hospital psych ward to keep our son over the 72-hour hold period. He was psychotic and refusing treatment. The nurse I pleaded with said, ‘You are his mother and he has a right to be crazy if he chooses.’”
This was said by a professional nurse in a hospital psychiatric ward. How many of you have heard variations of this remark?
Here’s another testimony from the mother of a psychotic child:
“The hotline sent two police officers to my house. When I asked them how they would approach the situation, one of the officers said, ‘If I feel threatened, I will shoot him.’ Based on this interaction, my husband and I declined their offer to do a ‘wellness check’ on my son.”
I will close off with two cases that have literally kept me awake at night. Because I cannot square either of them with any vision of an enlightened and just America.
Youknow about Tyler if you‘ve been reading this blog. I’ve written several times about him and his family. Tyler is the adopted son of Kimberlee and Dan West, two of the best and most civic-minded people I know.
Tyler was already suffering from brain-related afflictions when the Wests took him in as a small child. He is a small and dark-skinned and sweet-natured young man, and he has cognitive processing problems, including with language that is spoken to him. Later he was diagnosed with schizophrenia and autism.
These traits made him a target for repeated beatings in his childhood. Yet Tyler remained gentle, and developed talents for music composition and computer programming. He carried a comic doll around with him.
Still, his symptoms of psychosis deepened and he had trouble grasping reality. Two years ago, when Tyler was 16, he disappeared for about eleven hours with a 14-year-old girl. They both denied having sex, and no traces of semen were found. Still, a judged sentenced Tyler to five days in jail on a charge of statutory rape.
This sentence put Tyler in the crosshairs of local law enforcement. I will skip over several harmless misdemeanors and suicide attempts, not to mention futile efforts to have him civilly committed in a hospital or care center. Bed shortage, you see.
But I will tell you that Tyler’s brain continued to decompose. Disaster struck on a February night in 2017, when Tyler, in a mild psychotic state, wandered across his family’s lawn to a neighbor’s house, opened an unlocked door, and fell asleep on a sofa.
The neighbors discovered him and had him arrested on a charge of home invasion.
Tyler West entered the Muskegon County Jail on February 19, 2017, until June 29, 2018. Sixteen months, as his hearing date got postponement after postponement, During that time, he suffered concussions from at least four beatings from violent fellow inmates. He did stretches in solitary, and could be heard beating his head against a wall. He was deprived of regular medication.
Last June, Tyler finally got his sentencing hearing. The judge moved him to quarantine in a reception center for a month. He is now an inmate at the Richard A. Handlon Correctional Facility in Ionia, Michigan. Length of stay, undetermined. But he may be facing an 18-month sex offender class.
The whereabouts of Tyler’s comic doll are not known.
Okay, I have saved the worst for last. I ask you to please brace yourselves.
This is James Mark Rippee. He has lived on the streets of Vacaville, California, for nearly twelve years. He is schizophrenic. Thirty-one years ago, Mark Rippee suffered a motorcycle accident that left him blind, with head trauma, brain loss, and a shattered right leg that is kept in place with a metal rod. He has endured more than fifty surgeries. He is beaten and robbed regularly.
Mark Rippee’s brother and twin sisters cared for him for eighteen years, until they could no longer control his violent behavior. They have since petitioned every service agency available to them for help get Mark into a protected and therapeutic environment. Or at least a legal guardian, someone who would look after his finances and his needs for shelter, and food, and medical care, and safety.
Every agency has told them “No.”
The bedrock answer is that Mark Rippee has his RIGHTS!
He enjoys the “right,” the civil “right,” to refuse care and treatment. And in his disordered, shrunken state of reasoning, he exercises that right.
And that is all the caring agencies need to hear in order to turn their backs on this hopelessly brain-damaged man.
Here is Mark’s brother, Joseph Privatte.
“I have contacted lawyers, Adult Protective Services, The Public Defender, The Public Guardians Office, the police and fire departments, Mission Solano, five hospitals, several case workers, Laurel Creek Mental Health, the Vacaville Homeless Roundtable, the Solano County Health and Social Services Administration, the Vacaville mayor . . .”
..and he goes on. I’ve left out about half the agencies he has contacted.
And now listen to Mark’s sister, CJ Hanson, after she attended a meeting of the Solano County Board of Supervisors. They were seeking to have Mark designated as “gravely disabled” so that he could be involuntarily committed and receive protection from the county.
California law defines “gravely disabled as being unable to provide for one’s basic personal needs for food, clothing, or shelter.
The siblings’ mission failed. The Board of Supervisors, CJ told me in an email, “consider him self-sufficient if he can eat out of dumpster. They consider him self-reliant if he knows to cover himself with newspapers, or to sleep under a bush to try to stay warm. They consider him self-sufficient if he can panhandle.”
CJ wants to get the state to re-define what it means to be Gravely Disabled. “If my brother is not aware or capable of seeking medical attention, then he is not capable of being self-sufficient. The criteria now in use is archaic! It is disgusting! It is inhumane!”
And it is likely to remain in use for the foreseeable future.
I can’t predict the fate of Tyler West or James Mark Rippee. Or the tens of thousands of Tyler Wests and James Mark Rippees who suffer atrocities today because institutions of justice and reclamation have turned their backs. I’ll repeat it: suffer atrocities, in the landscape of ignorance and shame, the graveyard of hope, or the swampland of wasted resources, that make you wonder at times how far we have really progressed from the era of Bedlam Asylum in the London of the Fourteenth Century, where torture, demonic superstition, and shackles ruled the brief lives of the so-called idiots and lunatics and morons trapped inside its filthy cells.
I am tired of wondering. I am tired of passively complaining. I am tired of giving talks around the country that aim to stimulate the passion for reform, yet result generally in kindhearted applause and handshakes.
I am angry and frustrated, and I want action! I have chosen this gathering of Pathways to Hope as the occasion for two specific action proposals that I am willing to fight for, if enough committed people will rally along with me.
Proposal One is my call for the establishment of a federal Cabinet-level department, the Department of Mental Illness!
This Department will have broad powers of oversight and policymaking into federal, state and county levels of criminal justice: establishing and enforcing standards of education in mental illness among judges. Ensuring speedy trials for jail inmates and accountability in sentencing. Demanding accountability from jails in consistent, humane treatment and medication of inmates in psychosis.
And pursuing, with remorseless intent, the agenda of wiping out the great moral blight that continues to infect our jails, our prisons, and our claim as a civilized nation. I am talking about solitary confinement. It destroys minds! It does not rehabilitate! It is bestial! It must go!
That is Proposal One. A Cabinet-level Department of Mental Illness. Here is Proposal Two:
We must recognize mental healthcare for what it so clearly is: the civil rights issue of our time!
I’m not talking about symposia or a holiday or public-service commercials. I am talking about a national movement! Built around a charismatic figurehead. Someone who can ignite and fuel an ongoing national movement. A galvanizing male or female member of Congress, perhaps. A retired statesman. A member of the clergy. A leader from the world of business. Someone from the ranks of Project Hope. Or someone we have not yet heard of.
It is a civil right to live with hope and dignity. Other movements have recognized that and have broken through. Now it is our turn.
The novel was an indictment of cruelties visited upon American migrant farmworkers, traveling west to California to find survival work in the Great Depression.
One of its immortal passages described the shock—the sense of violation—that these starving migrant workers felt as they looked upon acres and acres of rich ripe fruits and vegetables that had been strewn across the land to rot, because the owners did not want to pay decent wages to the migrants for harvesting them.
Here is what Steinbeck wrote:
“There is a crime here that goes beyond denunciation. There is a sorrow here that weeping cannot symbolize. There is a failure here that topples all our successes.”
Do those lines remind you of anything going on today? We have work to do; the work of reclamation. Let’s get to it. Thank you.