Her first book reached out to mothers of afflicted and lost children, making common cause with their plight and her own. (And why is it, I ask again, that mothers seem always to be the point-parents in dialogues about m.i.? Where are the fathers?!) This second work is even more ambitious. It’s a compendium of stories that Ms. Ranahan has exhaustively retrieved from mothers in similar straits. It brings to mind the protean books of Studs Terkel more than a generation ago. Ms. Ranahan writes that she chose this interview-and-transcribe approach in lieu of “an extended rant,” and she has been forthright about the psychic weariness this journey has cost her. If you are lucky enough not to have lived in this horrific “sub-nation,” with its attendant catastrophes of diagnosis, effective treatment, ruinous healthcare costs, courtroom and criminal justice, effective political leadership, and awareness in the culture at large, please read Ms. Ranahan. And then get busy. You could help change the world. And DeDe Ranahan is now enshrined in the literature of enlightenment.
In the tradition of the late D.J. Jaffe, but with a psychiatrist’s grounding in nosology and a journalist’s zeal for social and civic truths, Insel explores the strange disconnect between stunning advances in the understanding of why and how the human brain can run amok, and the infuriating stagnation of actual reclamation for the mentally ill. He writes with laser-like clarity and the assurance of a master in his field.
I can’t recommend this book with any more persuasion than that of the great advocate Pete Earley, who writes on the back cover:
“’Healing’ is truly one of the best books ever written about mental illness, and I think I’ve read them all. Dr. Insel speaks as a parent, scientist, doctor . . . defining what’s wrong and offering clear-headed solutions—all the while guiding us forward with compassion, goodness, and hope in this juggernaut wake-up call.”
I am wearily–yes, wearily–posting links to two recent pieces by the peerless mental-healthcare blogger Pete Earley. Below them I’m linking to an archive within the blog you are reading now.
Their common denominator: they are about young brain-damaged men enduring Hell-on-earth lives on the streets of America as those who love them–mothers, sisters–trudge on through the years, and decades, trying vainly to awaken the conscience of the–the what? The whom? The withered, laughably misnamed “mental health” systems in their states that are restricted by outdated boneheaded rules and by the soul-deadened payrollers who run them. By the distracted politicians who appoint those payrollers and promptly forget them. By the oblivious electorate that will never form a constituency to keep the politicians on the case.
After his barbershop was vandalized by a mentally disturbed white man in Atlanta, Run The Jewels group member Killer Mike offered to help the man if anyone could identify him.
Killer Mike, a recording artist who is very vocal about supporting and enhancing Black entrepreneurship, posted a message on his Instagram account. He described his place of business being vandalized but used the moment to encourage others to “check on your mentally ill loved ones.”
The film version of NO ONE CARES ABOUT CRAZY PEOPLE, the documentary-in-progress, has a website as of Monday, December 27. Congratulations to producer Gail Freedman for achieving one more big step in getting this project to completion! https://noonecaresfilm.com
Here is a glimpse inside the soul of an activist. Leslie Carpenter of Iowa City, Iowa, is among the very best we have. She has connected, and deeply, with people at all levels of public service to implant her passionate agenda of mental healthcare reform.
She also immerses herself in the lives, the despair, the desperate pleas for reclamation, from ordinary people who see their loved ones in agony. She embraces their anguished stories and does what she can to aid and comfort them. Often, her efforts fall short, as most of such efforts must. And when fatigue and frustration overtake her, she confesses it, eloquently, as in this Facebook post. Read it, please, and absorb a hero’s account of how god damned hard it is for all of us.
Sometimes in the life of being a very public serious brain illness advocate, I have people reach out to me for suggestions for loved ones, resources, etc. I try to respond to all of them and at least make an effort to reach them, give them all of my contact information, and let them get back into contact with me. Not all do, but when they do, I try to listen with a caring heart and share information that might be helpful.
Recently, I was asked to meet with someone who has worked within the system who wanted to share information with me of several cases and system failures they felt I needed to know since I work at the local, state and federal level to improve mental health care.I just left that 2.5 hour meeting feeling filled up with the poison of knowledge of so many cases with adverse outcomes, due to not just gaps in the system, but active choices of key people in the system.I have known there were problems, gaps, and challenges. I now know some of the people who specifically have caused harm, and my soul is feeling overwhelmed with sadness and disappointment.I need to move forward with solving some of this mess, and I will. But for now, I am sitting in a random parking lot crying and processing and figuring out the best next steps.For now, let me say this:We need more people to go public with this humanitarian crisis of not treating people with serious brain illnesses and not paying for them to be housed in the best level of care where they can be the healthiest and most stable.We need to care. We need to act, no matter how terrifying it might be to bring this information forward.#WeCanDoSoMuchBetterThanThis
Teresa Pasquini’s magificent, tender, searing essay below speaks for so many of us. I’ve seldom read a more encompassing and truth-telling message from anyone in our sub-nation. I applaud the subtle and not-so-subtle political and cultural indictments in it as well. Godspeed, eloquent amiga!
My thoughts this 4th of July with a variety of pictures of my beloved son over the years showing his love of life and freedom. “Lets Free Danny with a system of Housing That Heals”
The 4th of July is a good day to talk about freedom. It is the day we Americans cherish and celebrate freedom. It should also be a day to reflect on those who are not free in America. I have a special memory that I will always hold of traveling to Washington, DC on the 4th of July to fight for the freedom of #FamiliesLikeMine. I talk about that trip and the history of that work in this post, https://www.facebook.com/teresa.pasquini.3/posts/10213321797638040. It is a good reflection to hold in my heart as I think about the intentions of today’s freedom fighters.
Today, there is a national focus on the freedom of one person, Britney Spears. The “Free Britney” campaign has created a national myth-making media machine that excludes some of the most vulnerable members of our society. My son is one of those who have been excluded. As the mother of a beloved son who has been on a “conservatorship” in California for approximately 20 years, I have been waiting to weigh in on the Britney Spears conservatorship controversy until I could analyze the information objectively. I have been too triggered and traumatized by the sideline commentary of people who don’t know what the hell they are talking about and their armchair analysis is ill-informed and dangerous. It needs to be countered by a mom who knows the truth and can defend conservatorships as a freedom-giving and life-saving tool for many families and their loved ones.
Yesterday, I took the time to read multiple articles, talk to friends who act as their family members’ conservator, and reflect on the past 20 years that my son and our family has experienced the “conservatorship continuum” in California. First, I read the New Yorker Magazine article, https://www.newyorker.com/…/britney-spears…, which is actually one of the better reported. It clearly demonstrates a disturbing picture of a young Britney who was used and abused by many predators and by a system intended to protect her. I won’t do a sideline judgment of her family’s intentions because I didn’t walk in their shoes. But I have walked in similar shoes and can comment on my own experience.
The “Free Britney” movement has nothing to do with my 20-year mission as a mother to “Free Danny.” You cannot and must not conflate and equate the two-track conservatorship laws in California. You cannot mix up the medical system, behavioral health system, guardianship, legal, and justice systems to create reform for some while others suffer needlessly. I have watched advocates and legislators do this for years. I have watched Disability Rights of California do this for years. This has made necessary reform impossible for people who are disabled by their “serious mental illness.” Now is the time for getting real reform for all. And all must mean all.
This past year, the research of Dr. Alex Barnard shined a light on how the California Conservatorship continuum lacks authority and accountability. His work has sparked conversation and understanding about the grave inequity of deciding grave disability in California. His work has also demonstrated that too often families like mine must put our loved ones and communities in danger in order to get them help before they harm themselves or others. He offers solutions in his paper, https://drive.google.com/…/1H-hKxnd…/view that has been widely shared and will influence necessary change.
Dr. Barnard has also weighed in on the Brittney Spears movement yesterday in this Sacramento Bee OpEd, “Free Britney, but CA must also reform conservatorship laws …” I agree with most of his points but don’t believe that the solutions for freeing Britney, Danny, my brother(also previously on an LPS Conservatorship) and possibly my 90-year-old mom are as straight forward as he suggests.
Those of us who may face possible capacity issues with our elderly parents don’t need extra hoops to jump through if and when we try to protect their health and safety. We must not create laws based on the worst actors in our society who take advantage of the most vulnerable. Most people do the right thing within the current Probate laws. So, I don’t know that making Probate Conservatorships as hard to access and maintain as an LPS Conservatorship is the answer. More accountability for both is definitely warranted.
We need a system of solutions that is flexible, funded, and full. We now have a system of care that is not full or complete for those people who ARE gravely disabled and can’t get treatment before tragedy. The lack of capacity standards for the SMI population is not adequately being considered in reform conversations because we treat some disabling brain illnesses as a “mental/behavioral” issue rather than a medical illness. We must no longer cherry-pick which brain illness deserves a right to treatment and dignified housing or who is left to die on the streets with their rights on.
My Danny has been on an LPS Conservatorship for 20 years. While it did save his life and his civil rights were overprotected in many ways, there was nothing civil or right about the care, treatment, and support he received. The current laws did not protect his right to health, safety, and freedom in the appropriate “least restricted environment.”
While on conservatorship he has been forcibly locked away in faraway institutions, placed in solitary confinement, shunned, punished, and suffered in too many ways. And, while people talk about using conservatorship as a last resort, they need to know that families like mine DID use it as a last resort while being forced to make our loved ones gravely disabled and homeless. It is a cruel and usual process protected by too many and it lacks the clarity of the broken mental health system’s reality.
As the author of the Facebook blog, “Broken”, recently said, “Anyone can present as clear for the few minutes she [Britney] was speaking to the court. Without a professional who has examined her, we can’t really know how stable she really is. And just because she can make a speech to plead for her “freedom” doesn’t mean she can manage her finances. This decision is bigger than any of us can know. We only see what the media tells us.” There is that measure of sanity at the moment that looks only at imminent risk rather than the historical course of the illness. Capacity must be measured using a big picture, not a snapshot.
Appearances are misleading. 18 years ago, my Danny appeared well, both psychiatrically and physically, was taking his meds, had a room in a board and care and so his conservatorship was dismissed against our family wishes. That very night he stopped his meds. About a week later, he was on the BART tracks threatening to jump. He was 5150d (one of the 40 5150s he has endured) again and put back on an LPS. He has remained conserved for the past 18 years.
The conservatorship is what has enabled Danny to be free and stay free. He is adequately protected when the conservatorship renewals take place. He has psychiatrists who work with him to discuss his current state. He has a mom and dad who he relies on for advice. He has a public conservator who he trusts. He is represented by a public defender who is knowledgeable in conservatorship law. He has the capacity now to know that he needs support and help. However, he doesn’t understand why there is still no system of Housing That Heals to provide the medically necessary continuity of care to protect his freedom and not risk his dignity again should he go off of his conservatorship.
We talked about it just last week. He called and said, “Mom, if I go off conservatorship will you and dad help me?” I said, “Of course we will always “help” you, but we can no longer house you and be your sole caregivers. We have tried to do that off and on for over 20 years while ON an LPS Conservatorship and it didn’t work for any of us.” He said, “I understand mom. I will stay on it.” He might change his mind between now and when that decision is made by his doctors and the courts later this year. I will support him to learn about his options and I will fight for his right to live in as much freedom as is possible. I am a freedom fighter, too.
“Free Britney?” Probably. Britney has a house, food, and estate worth 60 million bucks to prevent her from becoming gravely disabled again. She deserves her freedom but should have a clear shared decision-making plan moving forward that will protect her health and wealth. I want that for her and for Danny. They both have movements fighting for their rights. Danny’s is different. It is a Moms On a Mission movement for a right to live in Housing That Heals. This movement is growing.
Housing and healing have been my mission for years. It is a mission that is ignored by many progressive Californians. The progressive movement elevates the right to shelter and the right to housing above the right to treatment. They protect one’s right to refuse treatment even if you lack the capacity to know you need it. A recent article by Heather Knight drives the issues home for the liberal /progressive California, San Francisco’s mental health care system fails two men: one killed, the other his allegedkiller.https://www.sfchronicle.com/…/San-Francisco-s-mental….
San Francisco Supervisor Mandelman is quoted and is right. There is nothing progressive, civil, or right to see here. “It’s the most dystopian version of progressive politics,” Mandelman said. “We’re all about civil liberties, but we don’t make the investments in basic services for sick people. We have this entirely negative version of liberty, about being free from things. But your freedom to live a decent life with dignity? We apparently don’t care about that at all.”
What would be progressive is if we would stop treating SMI as a “behavioral problem” instead of a brain illness. I don’t see that movement going on in California. Just more of the same. A lot of talk about peer support, which is great for many, but not all. Where is the talk about medical support in treatment facilities with compassionate providers who are given a continuum of services to support their patients upon release?. That continuum must include conservatorships as a prevention and intervention program for people like Danny who need more time to heal than his brain allowed him to understand in 24-72 hours. He understands now but it should not have taken 20 years of forced suffering to “Free Danny.”
As many know, Danny continues to improve while living in the community and he remains on an LPS Conservatorship. As it has for the past 20 years, it will be up for renewal again later this year. We as a family will consider all options in a shared decision-making process with Danny, his doctors, and his conservator. We continue to be grateful to Contra Costa Health Services and the Contra Costa Public Guardian’s office for partnering with our family over the years to help Danny live his best life. We hope that partnership will continue whatever happens next on Danny’s recovery journey.
I hope that the media, disability rights organizations, public defenders, legislators, social justice reformers, housing rights, and other mental health advocates will not forget to fight for Danny to live his life in health, safety, and freedom. And, I hope that they will join the Housing That Heals movement that seeks a system of care that will never risk anyone’s dignity by letting them be homeless, failed, and jailed. And, that they will protect the life, liberty, and the pursuit of happiness of all. And, all means all.
Happy 4th of July 2021. Let freedom ring today and every day in the USA. P.S. Thank you Kathy Day for your help with thinking this difficult subject through and for your great editing support!
I cited this barbaric penalty in my previous blog post, which was a plea for Ashley Biden to join her father’s Administration and co-ordinate federal policy regarding mental healthcare reform. Solitary confinement in our jails is one of the scourges that most needs reforming–obliterating, actually–if we are to call ourselves civilized. Solitary works horrors on the human brain. It drives mentally ill prisoners deeper into madness, and can afflict the sanity of those who have not shown symptoms of brain disease. And it does no good whatsoever–corrective, societal, or moral. That is the widespread theory. Here is the latest glimpse of the widespread practice.
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.
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 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.