Among the most infuriating barriers to mental healthcare reform is the indifference of policymakers. The mentally ill don’t form a significant constituency, in voting or in contributions. Thus, you know, nobody cares.
State Senator Cindy Friedman, a Massachusetts Democrat, has burst through this complacency. Working with some colleagues mentioned below, Senator Friedman has crafted an important new bill and shepherded it through the Senate. It is on its way to the state’s House of Representatives for enactment into law.
The ABC Act, as it is called, should be a model for every state in the nation. And it signals to reform advocates that they have a new champion. Kudos to Senator Friedman. And thanks to my fellow advocate Donna Erickson for the heads-up!
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.
No, seriously–and props, and godspeed to her! Her piece in the October 19 Washington Post turns a rare spotlight on one of the many under-explored areas of corrupt and viperish traps for mentally disturbed children.
Like solitary confinement–into which Ms. Hilton was dumped for a while, even though the foul world of “parent-approved kidnapping” has no law-enforcement authority–these predatory outfits are barbaric relics of the notorious “Bedlam” asyum, founded nearly eight centuries ago. Justice and human decency cry out for their abolishment, yet they and similar atrocities remain in business.
Paris Hilton’s bold denunciation has helped me to understand her for the first time, and to welcome her into the lists of reform advocacy. We need many more like her: public figures (all right, dammit, celebrities) who speak out from raw, often psychically crippling personal experience, to help us end the long sordid reign of abuse toward the mentally ill.
From the Washington Post:
Opinion: America’s ‘troubled teen industry’ needs reform so kids can avoid the abuse I endured
When I was 16 years old, I was awakened one night by two men with handcuffs. They asked if I wanted to go “the easy way or the hard way” before carrying me from my home as I screamed for help. I had no idea why or where I was being taken against my will. I soon learned I was being sent to hell.
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.
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).
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.
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.
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.
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.
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.
I almost wrote, “the mentally ill people of America lost a hero on Sunday,” but that would not have been nearly adequate to contain this giant’s significance to our country.
Dj Jaffe, who succumbed to leukemia and other cancers at age 65 after stoically battling them for fifteen years, was a human beacon of hope and guidance and enlightenment to those who suffered from chronic brain diseases (“chronic” meaning genetically inherited and incurable). And to their caretaking relatives, mostly mothers, in practice; to their often overmatched doctors and therapists; to uninformed policymakers and corrections officers.
Dj was among the three most influential advocates for the mentally ill in the brief history of that calling, along with the author and blogger Pete Earley and the pioneering statesman of advocacy, E. Fuller Torrey, author of many books and the founder of the Treatment Advocacy Center. The TAC website is the largest, most diverse compendium of m.i. information online.
Dj Jaffe was a skinny force of nature the likes of which the cautious mental healthcare world had never seen, and not everyone liked him. He walked away from an obscure career in advertising after the sister of his wife, Rose, was stricken with mental illness thirty years ago. Razor-sharp and pugnacious when he had to be, he transformed himself into an expert on the nosology, neuroscience, politics and policy issues surrounding the disease. Wearing his unrepentant bluejeans, ponytail, and oversize glasses (and a wrinkled suit when he had to), Dj mastered libraries of information, then cycloned through public hearings, press interviews, and panel discussions, rising to challenge the dignitaries who did not know what they were talking about—or didn’t care. He delighted in getting thrown out of hearings. Opponents were infuriated by his refusal to back down from a stance or a demand. Truth to tell, he was not always right.
He was right often enough. Boring in on our slipshod structure of criminal justice for the insane, he was instrumental in pushing the act known as Kendra’s Law, which allows courts to order treatment for certain mentally ill and perhaps dangerous patients even if they resist it. He worked with the Pennsylvania Republican congressman Tim Murphy to achieve the Helping Families in Mental Health Crisis Act. He demanded, and largely achieved, a long-delayed recognition that “chronic mental illness”—genetically inherited and incurable brain afflictions such as schizophrenia and bipolar disorder—differs on a quantum level from such lesser complaints as depression, alienation, alcoholism, and drug abuse.
In 2017 Pete Earley distilled the reasons why this distinction is essential:
“The problem, according to Jaffe, is that the focus, money and attention in our nation is focused on helping nearly everyone but those ten million [with chronic m.i.] and the result is at least 140,000 SMI Americans being homeless, 392,037 in jails and prisons, 755,360 on probation or parole and at least 95,000 who need hospitalization unable to find a bed.”
His politics were less doctrinaire than fluid, tuned to the needs of the dispossessed who consumed his passions. He founded the nonpartisan Mental Illness Policy Organization. As an adjunct fellow at the conservative Manhattan Institute, Dj spoke at a White House summit on mental illness in December 2019. His countless articles and appearances across the media spectrum testify that he was a zealot not for ideology, but for enlightenment and hope.
“Since 1998, when we first started making plans for what became the Treatment Advocacy Center, Dj has been the single most effective advocate I have worked with and a close personal friend. His dedication to improving the treatment of people with serious mental illness, based on his experience with his sister-in-law, has been extraordinary. The amount of time and energy he has invested in this mission, first at TAC and then at Mental Illness Policy Org, is legendary. Even as he knew he was dying, DJ said nothing and continued his advocacy efforts.”
On a personal note:
It took me a while to get comfortable with the idea of meeting Dj Jaffe. His reputation as a controversial know-it-all firebrand put me off. But when we did meet, the rapport was instant. We discovered that we could make one another laugh. (I nearly lost it in a hotel coffee house in New York when my friend got embroiled in an argument with the waiter. This was no ordinary waiter-customer spat: the waiter was yelling at Dj!) Over several breakfasts, dinners and drinks in New York, Washington, and in the Powers home in Vermont, and in many lively emails, we kept up a bantering style that could segue seamlessly into explorations of our passions and ideas.
His just-beneath-the-surface humor proved the key to Dj: The firebrand was a necessary tactic, not a character flaw. In fact, Dj Jaffe was an extraordinarily loving man, as his career shift after his sister-in-law’s illness demonstrates. He enjoyed a longstanding marriage to his wife Rose, a lovely, laughing woman whom he adored. When Rose died two years ago, his friends expected that Dj would be devastated with grief. He may have been, but he was back to his advocacy work in a day or two. He never mentioned his feelings.
He met a woman named Paula about a year and a half ago, via a dating app. She was the one who reached out to him, friends say. Dj probably knew at the time that he was dying. Paula and Dj were married on Friday in his hospital room. Paula wore white pajamas and stomped on a Styrofoam cup. By all accounts, the marriage was a happy one. Because that’s the kind of guy Dj Jaffe was.