The documentary-in-progress inspired by my book No One Cares About Crazy People rolls along. Here is an updated promo reel created by the producer, Gail Freedman.
Gail Freedman, the gifted and tireless producer of the documentary arising from my book No One Cares About Crazy People, has just revised and expanded the promo reel for the docu-in-progress. The new, riveting interviews show that Gail has traveled the United States on limited resources, eliciting personal stories from a range of afflicted people and their loved ones. She has also homed in on the unthinkable tragedy of the Rippee family of Vacaville, CA, giving us raw access to the ravaged Mark Rippee. Brava, Gail!
A personal note: the film now opens with my late son Kevin belting out “One More Saturday Night,” accompanying himself on an acoustic guitar, at age 7. Kevin was en route to becoming one of the premier guitar artists in the nation when he took his life in 2005 on the eve of his 21st birthday. Schizoaffective disorder.
I gave this tape to Gail early in the process. But I had not then listened to it myself–couldn’t. This morning was the first time I had heard Kevin’s child-voice in about 30 years.
I am typing these words in a near-incoherent state. I am consumed with boiling anger that makes me want to scream; black despair; bottomless pity for Rebecca Distel Reinig, the mother of Joseph; for Joseph’s father, and for Joseph, rest his soul. I feel such contempt for the pigsty that is our mental healthcare system and for the hospital and the healthcare factotums who carried out this coldblooded deceitful near-execution. (A sack lunch they gave him before dumping him in the rain. A SACK LUNCH).
I feel trepidation on behalf of certain friends who will read this and feel stricken because they have also felt the sting of American barbarism—institutional and private—as regards mental illness. The Rippee family. The West family. Find them in my blog archives if you don’t know who I am talking about.
Yet I derive hope from the handful of heroes in this country who do not let their own exhaustion and despair halt their crusade: the author and advocate Dede Moon Ranahan, who originally posted Rebecca Reinig’s nightmarish account of her son’s fate. Others.
I know that many, if not most of you, being human, come upon my mental-illness blog posts and read past them. Not this one. Please. Don’t skip this one. Read it, Every word. And learn something about the hellscape that awaits just on the other side of the membrane.
From Rebecca Distel Reinig:
“It’s with a heavy heart and a sadness that I did not know existed in a human soul that I would like to share with you the passing of my son Joseph. He was found Wednesday in some bushes in Oceanside, CA. Alone in the rain. Still wearing the hospital gown that he was had on when he was dropped off by staff from the behavior health hospital on Monday afternoon. His death is a tragedy and could have heen prevented if the doctors and social worker had truly listened to me when I begged them to not release him to the streets. I told them he was gonna die. Keep reading…I will explain the trajedy of his death. His cause of death is under investigation by the San Diego Coronor. An autopsy will be performed within the next few days.He just turned 30.
Joseph Reinig (Joey) visiting Children’s Hospital
For those of you who do not know my son’s story, it’s not that much different than thousands of families out there. Joseph lived in transient camps in San Diego County with severe mental illness. We wanted him to live with us. In fact we took early retirements to move him and us away from San Diego 350 miles north to a small town in the foot of the Eastern Sierra mountain range, where I was raised, and where as kids our we would take our children. We thought taking him to the mountains where he loved hiking and fishing, that giving him a stress free life in the mountains and loving him up would “cure” him. His delusions had him convinced that living up here with us was endangering our lives. He was convinced that if he did not leave ” they” would bomb our house, kill us and put him in a cold dark room ( not unlike the padded cell in jail where he would spend days at a time in, naked in a straight jacket).
Joseph and his family at his high school graduation
He lasted living with us for only several months, and thinking he was saving our lives, he went back to the streets of San Diego CA. That was 3 years ago. Since that time his life had been a revolving door of mental hospitals, medical hospitals and jail. He has been hospitalized in behavior health hospitals 9 times this last year. Sometimes against his will, often times he would admit himself. Often times I would drive the 5 hour trip to pick him up, get a motel and would try to convince him to come home. He always refused. Stating our house would be bombed if he did.I’m also angry…that’s not even a strong enough word. Joe admitted himself last week to Aurora Behavior Health Hospital. That was his go to place. He liked the staff and doctors and they seemed to care about him. It was there 2 months ago that the psychiatrist determined he was unable to care for himself and referred him to the County conservitor office so his dad and I could gain control of his medical needs and help him obtain the long term help he needed. The conservitor investigator denied the claim because he did not meet the criteria of gravely disabled. In California the bar is set very high to meet the criteria of gravely disabled. I have yet to know of anyone being successful with that endeavor in california. Accept Britney Spears. Her conservitorship is a slap in the face to those of us whose loved ones truly need help.
Joey with his dad
Anyway..Last week Joey admitted himself because he was feeling suicidal and was psychotic. He would always call to tell me keep was trying to get help. He wanted help so badly. Last Friday the social worker called and assured me that he would not he released to the streets, she was trying to get him reestabluxhed with a care management team and get him long term housing. I stressed that he could not be released to the streets. She assured me he would not. Monday morning she called and said he was heing released and Gould I pick him up? I asked what happened to the management team and housing. She explained no one would accept him because over the weekend he had been violent with staff. I instantly asked her why would she ask me to pick him up if he had been violent? I begged her to have him out on s 5150 hold to buy me some time to figure it what to do. She was heading to a meeting about him and would talk to the doctors. I was clear when I stated to her that under no circumstances should he be released to the streets. I said he is gonna die of we cannot get him the help he deserves . She assured me they would not and would get back to me. She did not. I called the hospital to talk with Joey monday night, he was not there. Still no call from the social worker. Tuesday morning I called her. she explained that her ” team” had given him a ride to Ocesnside and dropped him off at a CVS pharmacy with his prescriptions and a sack lunch. I was in shock, hung up and waited for his call. He always called. His body was reported to the sheriff’s office Tuesday night but because of bad weather they could not locate him with drones. The homeless lady who reported him took them to his body Wed. morning. He was still wearing his hospital gown and still had a baggy of white powder clutched in his hand. He was steps from the homeless camp. the coronor explained that it appeared he got some bad dope laced with fentanyl. Although suicide and foul play have not been ruled out. What kind of crazy fuck places meth with fentanyl? Its deadly and kills almost instantly.I’m so angry and devastated I want the system to pay for failing him. I want accountability. I m so angry its consumed me. I dont want to he consumed. Yesterday in.my grief i called a wrongful death attorney and babbled like an idiot. I told them i needed an attorney with balls enough to take on the “system” and make the “system” accountable for my son’s death and the needless deaths of all the other josephs out there. I want justice, awareness , accountability and the laws changed that binds the hands of families trying toget help to save their loved ones lives . iI dont want his death to have been in vain. The attorney politely said they will get back to me. I doubt it.Meanwhile we sit here trying to figure out where we will come up with the money to bring our son home and have s memorial for him. Death is such a money making business and for a fee if $250 we can buy 30 minutes if time to see our sons dead body and tell him goodbye . …that is if he is in viewable condition. if not, for an additional 800 they will make him viewable.”
. . . Yet the Texas deputy attorney general’s ignorance about mental illness and his slurring of Simone Biles tells us all we need to know about how much America still needs to learn, and care, about “crazy people.” Especially including powerful people in our criminal-justice system. Which is one hell of a lot of learning and caring. Meantime, more shame on you, college-educated and privileged and complacent Aaron Reitz.
At age 15, in 1998, Kip Kinkel gunned down his parents and two school classmates and wounded twenty-five more people at a school in Oregon. Today, serving a life sentence, Kinkel has broken his long silence. Will his insights penetrate the fog of ignorance and indifference toward serious mental illness? It would be pretty to think so.
I was transfixed when I opened up the Huffington Post on June 13 and found the story that I attach below. I had mostly forgotten about Kip Kinkel; but I had built the first chapter-draft of No One Cares About Crazy Peoplearound his psychotic murder-spree of twenty-three years ago, near the dawn of our present mass-murder era. More specifically, I’d built it around the coverage of that spree on a 2000 edition of PBS’s Frontline.
Kip Kinkel being escorted by police officers. Image: WikiMedia Commons
I eventually discarded that draft in favor of a new beginning. I realized that starting my book with a description of such an atrocity would risk reinforcing the myth that serious mental illness is synonymous with violence. Yet I kept the draft in my files. That draft also is attached.
A lot has happened in the world of mental illness over those twenty-three years, by no means all of it good. Yet to re-read the HuffPost story–centered on interviews with Kinkel over several months–is to be reminded how primitive public perceptions of schizophrenia remained near the turn of this century.
One year after Kinkel’s rampage, teen-agers Eric Harris and Dylan Klebold slaughtered fifteen people, including themselves, at Columbine High School in Littleton, Colorado.
I listened to news accounts of Columbine on the radio of a rental car in my home town of Hannibal, Missouri, where I had returned to gather material on a pair of cold-blooded killings by teen-aged boys for my book, Tom and Huck Don’t Live Here Anymore. Several commentators attributed the Colorado murders to the fact that Harris and Klebold . . . wore trenchcoats. Two years after Columbine, I published a piece in The Atlantic about the Zantop murders in New Hampshire. Two adolescent boys from a small town in the northern part of the state knocked on the door of a beloved Dartmouth academic couple in nearby Etna, whom they did not know, and stabbed both to death. In none of these stories, including my own, were the terms “schizophrenia,” “psychosis, or “serious mental illness” mentioned. Those who do not remember the past . . . https://www.huffpost.com/entry/kip-kinkel-is-ready-to-speak_n_60abd623e4b0a2568315c62d
Another slaughter of a mentally ill Black man as he fought for breath and screamed for life, this time in a North Carolina jail, at the hands of men with uniforms and badges. And tasers and pepper spray.
I am beyond sick of this. A couple of weeks ago I reached out to another centrally connected American political family, struggling once again to offer a concise, yet comprehensive, yet concise, yet comprehensive, yet . . . you get the picture . . . compendium of what minimally needs to be done to clear out the massive pain and injustice and obstinate ignorance that has kept “crazy people” enshrouded for, you know, like totally forever. Once again I drew on the recommendations of leading advocates in the crusade, and psychiatric professionals, and . . . and I’ll be candid: not a murmur in reply.
There’s never a murmur in reply.
I don’t think that substantial reform of mental healthcare is ever going to occur in the United States.
Psychotic killers? Just dump them in Bedlam Asylum, circa 1337.
Charles H. “Chuck” Ramsey is a retired law-enforcement professional of unusual distinction. At 71, he has won praise for his service as the commissioner of the Philadelphia Police Department, as chief of the District of Columbia Metropolitan Police, and as a young officer in the Chicago police department. In 2017 he joined CNN as a commentator, where he has earned acclaim as a blunt and fearless truthteller.
Charles Ramsey
All of which makes it especially painful to report that on Tuesday, Commissioner Ramsey deepened a grievous gulf of ignorance in America’s concept of mental illness. He opined in an on-air discussion that it was “totally unacceptable” for Al Aliwi Alissa Ahmad, the suspect in Monday’s massacre of ten people in a Boulder, Colorado, to have gone and done that. No excuse for it! And no forgiveness!
No kidding!
Ramsey made his declaration in an interview with the CNN news host Brooke Baldwin. Here is what he said, in full, on the topic of “forgiveness.”
“I mean, I feel no empathy for this guy at all, so forgive me [sic] for that, but I just absolutely don’t. No, no forgiveness needed. There is no excuse to go and kill people. There are many people who suffer from mental illness. They don’t do this kind of thing. I mean, that’s just—it’s just totally unacceptable. So, I don’t go for it. Not for a second.”
The cluelessness, the beside-the-pointedness, of this little tirade are—well, they are totally unacceptable. As was the glazed reaction of Brooke Baldwin, the “Peabody Award finalist” who did not bother herself with a follow-up question such as—oh—“Commissioner Ramsey, would you give us your definition of ‘mental illness’?” Or, “Why do you think that some psychotic people ‘do this thing’ while others, many others, don’t?”
Brooke Baldwin on set in DC. Credit: Patrickbenson96 via Wikimedia Commons
Baldwin, by the way, opened the show by confiding to her fans that she would soon vamoose to promote her new book about “women unlocking their collective power.” A grateful nation holds its breath.
Do I sound peevish? Very well, I sound peevish. Clarity and precision are essential in discussion of mental illness, and clarity/precision were exactly what neither Ramsey nor Baldwin provided their viewers in this soiree. Their careless self-absorption is typical for much of what passes for media and political wisdom in the wake of an atrocity such as Boulder. And Atlanta. And Springfield, Missouri. And Midland, and Odessa, and . . .
What am I getting at? I’m getting at this: both the pontificating Ramsey and the passive Baldwin seemed content to agree that killing people is a very bad thing to do, just a totally unacceptable thing, and shame on the wussies and sob-sisters who would garland the killer in forgiveness. Killing while mentally ill? Boo hoo. Full stop.
Here are some generally accepted facts, simple to understand: facts that would reduce fatuous and inept declarations by public figures and combat the toxic, ingrained superstition that “mentally ill” equates to “monster in need of chains”:
Fact One: The seriously mentally ill (schizophrenia sufferers and others with chronic brain diseases) are statistically no more prone to violence than the general population.
Fact Two: “Forgiveness” or its absence is irrelevant in the cases of psychotic killers. Their affliction has robbed them of impulse control and any grasp of moral responsibility. They’re not “bad.” They’re mad.
Fact Three: There is a remedy, or a partial remedy: Professional treatment. Professional treatment (diagnosis, a medication regime, and ongoing therapy, commenced as soon as possible after psychotic symptoms appear) can stabilize the chronically disordered mind and greatly reduce the impulse to harm oneself or others.
Fact Four: Contrary to a destructive myth just now making the rounds, the evidence that Al Aliwi Alissa Ahmad was able to plot his rampage is not proof that he was sane, and therefore not entitled to supervised hospital care instead of criminal incarceration. Insanity is not a form of stupidity. People in psychosis are often ingenious in tossing their medications, covering up their symptoms, and plotting their lethal agendas. Thus, proof of insanity remains an uphill battle in the courts. In Colorado law as in other states, “Every defendant is presumed sane. The defendant carries the burden of introducing evidence of insanity. Once such evidence is introduced, the burden is on the prosecution to prove sanity beyond a reasonable doubt.”
Fact Five: Despite massive efforts, America remains mired in mental-illness illiteracy. Few people like to think about it, much less learn about it. The consequences—to public health, to those caught in the criminal-justice system, to families, and to the national treasure—are enormous. If someone at the pinnacle of law enforcement—a Charles H. Ramsey—can publicly demonize a killer ensnared in psychosis, just imagine the destructive ignorance throughout the echelons below him.
The country needs to be educated in mental illness. Its leaders and spokespeople need to educate themselves.
The mothers of mentally ill children exist in a special Hell-Within-a-Hell.
I can attest that this is true for many fathers as well. Yet evidence from many sources shows us that it is the mothers who suffer the most. Sadly, they often struggle alone, as many of their husbands withdraw from the the horrors and the responsibilitiers of coping with such a calamity.
My friend, the psychologist Lotte Weaver, understands this. Lotte and her husband, the wonderful singer-songwriter Ray Weaver, are the parents of an afflicted daughter, Savannah. The three of them remain a tightly bonded family unit.
Lotte and Ray have shepherded Savannah through a precarious but successful stabilization. Lotte has turned her energies and her formidable intellect to mental-health advocacy. Her latest project, an online workshop for “for mothers of sensitive and stricken children,” as she phrases it, will go online March 8–International Women’s Day.
I strongly recommend it for all mothers of such precious children. Lotte’s own mission statement, below, expresses her mission with more eloquence than I can muster.
It is what happens when we are met in our vulnerability. Met as who we are, with ALL that we are. Understood in ways that only someone who has gone through similar experiences as our own can understand.
My friend – although we have not yet met in person – colleague and fellow parent of the severely challenged, Ron Powers, wrote the kindest post to me.
He wrote me on a day where I felt so vulnerable, and he could not know that his message reached me as I needed it most.
He is, like me, an advocate for better conditions (much better) for the mentally ill and their families. He wrote the outstanding and heartbreaking bestseller No one Cares about Crazy People (The Chaos and Heartbreak of Mental Health in America). A must-read if you have a child struggling with mental health or severe illness.
We share being ‘out there’ with our own stories because our hearts have led us down the path – and once the heart speaks, you better follow. No other road seems possible after that.
But it is vulnerable!
Some days, it just feels powerful and right. Other days, I want to pull back in my mousehole and act like I was never ‘out there’. Today was such a day.
Then he wrote me, and he changed my day with his words: ‘Lotte, I just saw your post on the mother’s workshop. What a breathtaking idea and presentation. I have so much respect for you. I want to build a blog around this. I am requesting your permission to do so. Godspeed this workshop and your rare leadership in mental healthcare.’
Thank you Ron for reminding me of my leadership. Sometimes the responsibility can feel heavy. But today you made it feel light again.
And thank you for meeting me in my vulnerability today. And for sharing your’s with me.
Will you step up as the standard-bearer for the mentally ill?
Full disclosure: I have struggled with this blog post for days: post it or throw it away? Revise it one more time so that it reads as Beltway-savvy, or put on my Mister Smith hat and hope it will ignite a 1939 Hollywood moment? Decide to not intrude into the life-choices of an honorable private woman who made it clear recently that she wants to remain private, or say the hell with it and make the intrusion anyway?
Hell with it. Here goes:
On August 23rd of last year, America lost one of the two or three greatest champions of mental healthcare reform since Dorothea Dix. The vast sub-nation of the afflicted, their families, and their ardent yet scattered and over-burdened advocates is seeking a replacement: someone who can help unify this nationwide archipelago of sufferers into a single movement with a coherent voice.
I believe that Ashley Biden, the new President’s daughter, is the person most graced by fate to advance our mission. And I will tell you why: in addition to her experience and expertise in mental health issues, Ms. Biden would embody an influential link to policymakers that the afflicted and their caretakers have yearned for roughly since the founding of the Bedlam Asylum in 1377.
Ashley Biden in 2016
I can already hear the screams of “nepotism!” from the President’s political foes. (At the same time, I’m mindful that some of the most stalwart friends of the mentally ill have been Republicans.)
As Elizabeth Warren used to say, I have a plan for that: make Ms. Biden an unpaid White House staff advisor specializing in the interests of the mentally ill.
(Ashley, is there anything else I can do to enhance your life before I sign off??)
Let me give a thumbnail sketch of the man whose death has created such a vacuum:
Dj Jaffe
Dj Jaffe was 65 when cancer took him from us. Most Americans had never heard of him. Yet within the archipelago, he was a superhero. He’d walked away from a cushy career in advertising to take up the cause when his sister-in-law developed schizophrenia. He understood and worked with Congress, the courts, community health centers, and the county jail, having mastered the complexities of schizophrenia and its related chronic predators upon the human brain. In 2011 he founded the indispensable Mental Illness Policy Org., a colossus of links to data, information, helpful sources, and policymakers. He was a co-founder of the Treatment Advocacy Center along with his own personal hero, the pioneering E. Fuller Torrey. His nonprofit book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, is the single most comprehensive manual on the subject in our time.
Dj Jaffe’s passing has left an unacceptable void of wisdom, energy, and passion at the center of our efforts to reclaim the grievously broken systems of mental healthcare in America. There are dozens of men and women who would do credit to my late friend’s legacy. And then there is Ashley Biden.
As I say, Ms. Biden has made it clear that she dislikes “the spotlight,” and bravo for that. Yet her role as an advisor to her father, or perhaps as director of a new foundation, need not entail being in the spotlight so much as seizing the spotlight. And turning it around upon a shadow-enshrouded system that to this day abuses insane people with barbaric neglect and cruelty reminiscent of the Middle Ages.
With scattered exceptions, the mental-illness archipelago historically has been starved of government access. And when any level of government intervenes, it usually leaves things worse than they were. (I write this as a believer in active government.)
Think of “deinstitutionalization,” the sixty-year-old policy disaster that set off the national homeless calamity that expands to this day. Think of county jails as our new, dysfunctional mental hospitals. Think of mind-destroying solitary confinement, a useless torture practice that too often serves as a convenient storage-box for possibly prodromal juveniles. Think of un-convicted juveniles, untreated afflicted kids among them, waiting behind bars, often for weeks and months, for their trials. Think of untrained or uncaring police killing psychotic victims on the streets.
The crises and atrocities cited above are known to most people with a passing interest in the squalid fate of “crazy people” in America. The wish-list below will seem arcane to lay readers; yet it is packed with urgent, unaddressed problems that stunt and shorten the lives of the chronically mental ill, spread a widening cone of misery through their families and communities, and diminish the financial—and moral—health of the nation.
I’m indebted for this list to Leslie Carpenter of Iowa City, who with her husband Scott forms a tireless advocacy duo in America. Here it is:
–End the outdated, discriminatory federal rule known as the IMD Exclusion. This will increase the number of acute-care and long-term beds.
–Increase reimbursement rates for mental health professionals, direct care staff and facilities. This will help with recruitment, retention and quality of staff caring for people with serious mental illness (SMI).
–Increase funds for continued research for schizophrenia and related brain disorders.
–Fund and expand Assisted Outpatient Treatment Programs, along with Civil and Criminal Mental Health Courts.
–Expand funding for Certified Community Behavioral Health Centers in every state in the country.
–Stop wasting money on unproductive anti-stigma campaigns and. Use those funds to pay for the treatment of the most seriously ill, and the stigma will go away.
–Stop funding just more housing. Allow HUD subsidized funding for residential care facilities, group homes and facilities all along the continuum of care for people living with SMI and substance use disorders. Funded housing, tied with assisted outpatient treatment (AOT) programs, will allow the housing of people who don’t know they are sick, and keep them in treatment via outpatient civil commitments for treatment.
–Stop shutting down Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) if someone has to be hospitalized for 30 days or more. Shutting down the ability to pay rent is a major cause of homelessness among the chronic mentally ill.
–Create loan forgiveness incentives for mental health professionals practicing in rural locations.
–Fund medical schools to increase enrollment for psychiatrists and other mental health professional programs including nurse practitioners, physician assistants and psychologists.
Every one of these proposals requires intense, coordinated governmental action. As of today, there is no governmental coordinator. Not even Dj Jaffe had such power. This thin and secretly failing hero drew upon his extraordinary passion, his vast self-education in this complex cluster of subjects, and his gift for eloquence in the media, in testimony, and in his book.
The dispossessed mentally ill people among us cry out for a figure to replace Jaffe, and perhaps even surpass his legacy. Given Ashley Biden’s training, intelligence, commitment to the cause of mental health, and principled access to the (recently besmirched) corridors of congressional power, I believe that she could be this figure—a catalyst for reclamation.
We live in a fragile national moment, a moment saturated with promise and with menace. On the hopeful side, I marvel at the brisk accomplishments of President Biden’s first weeks in office, and I hear an old trumpet sounding, and I can almost envision a second New Frontier. On the dark side linger the shock-images and aural bedlam of the Capitol insurrection and the miasma of the impeachment trial, with portents of worse to come. And I wonder whether collective psychosis—madness—is our new pandemic.
It will take every person of good will to steer our future toward the light. Mental illness is just one item in a crushing agenda; yet it looms over us all, a scourge of mostly unfathomed proportions. (How far have some of us drifted into collective psychosis? Is there momentum in this direction?) A voice of informed influence near the apex of our government would be a godsend. The archipelago needs you, Ashley Biden.
The ravages of mental illness continue to flood every corner of society. Coverage of this atrocity has improved in quantity and sophistication in the last quarter-century–but to what end? Policy-makers, law enforcement and public opinion remain largely indifferent to meaningful education and reform. Mis-diagnoses, non-diagnoses, incarceration, hospital indifference, and violent deaths of people in psychosis surge on, gathering speed. And no one is at the wheel.
This strongly observed and written story by Hannah Dreier of TheWashington Post throws light into an especially neglected precinct: Poor black families, and the mentally afflicted children within those families. It provides a glimpse of the day-to-day crises of a divorced Black mother, Kelli, and her two sons–one of whom, the 11-year-old Ahav, is diagnosed with schizophrenia.
You may read Dreier’s piece as simply a searing journey into the wilderness of one family’s mental-illness misery, and of the heroic efforts of Kelli to keep Ahav safe. A closer reading reveals a miasma of bureaucratic obstacles, therapeutic failure, option-choking poverty, and the constant dread of trigger-happy law enforcement that imprison tens of thousands of families such as Kelli’s in the rusted chains of our failed mental healthcare system.
