This Arkansas group, #ARmindsMatter, looks to be a prototype for citizen-based activism in all our states to demand relief from the many failures in America’s systems of mental healthcare.
I would be interested to learn of similar movements in other states. With an active, agenda-driven interlinkage of groups such as #ARmindsMatter, we could forge a powerful watchdog, lobbying, and organizing collective that would establish reform as the civil rights issue of our time and break the inertia that’s destroying the lives of so many mental illness sufferers and their families.
I thank the blogger and advocate Dee Dee Moon Ranahan for drawing my attention to this; it first appeared on her own excellent blog “Sooner Than Tomorrow.”
THE “RIGHT” TO BE SO ILL by Kathy Day
We just had a glaring incident of how untreated serious mental illness impacts the community.
A young homeless man that I know well and love, had an extreme outburst in front of our apartment. I don’t know what set it off. He was eating a box of cereal and drinking some milk. Then I heard him yelling at the top of his lungs. He started chasing another person down the street.
My neighbors across the street called the cops. They were terrified because they have two young boys and they didn’t want them to witness what was going on and they feared the young man could hurt someone.
The officers who came are well trained in crisis intervention. I asked them to try to take him to a hospital. They said they’d try but wanted to let him cool down first.
If he didn’t have the ‘right’ to be so ill, he’d have received the treatment he needs long ago. But the way the system is designed, he’ll have to demonstrate dangerousness, likely in the presence of law enforcement, before he gets any real treatment.
Turns out he was taken to the ER a week ago on a psych hold. The ER discharged him within 24 hours.
If he’s released early again, this family will be afraid of his next incident. It’s not fair that they should have to deal with the failures of the system of mental healthcare.
-Catherine Rippee-Hanson, a sister of James Mark Rippee
You know about Mark Rippee if you live around Vacaville, CA. Or if you read the text of the talk I delivered at the Pathways to Hope conference in San Antonio on August 24.
Mark Rippee has survived on the streets of Vacaville for nearly twelve years despite being sightless, missing parts of his brain, enduring the pain of an interior metal rod to support his shattered right leg, fifty surgeries—many of them to heal the wounds he has suffered from repeated beatings by passing thugs. . .
. . . And, oh yes: despite his diagnosis of acute schizophrenia (a diagnosis that, weirdly, Mark’s family cannot definitively confirm because of restrictive and nearly useless laws).
Mark Rippee is one of more than one hundred thirty thousand homeless people in California as estimated by the Department of Housing and Urban Development. Most of them are unsheltered. That figure amounts to one-fourth of the national homeless population (553,742). As one legislator wrote,
“Homelessness and homeless encampments have become a part of the permanent landscape of California.”
As hundreds of millions of dollars in new-housing money languish in law-court entanglements, the death toll among California’s homeless has been rising: infections, pneumonia, cancer, cirrhosis, and other treatable diseases claim ever-more victims. In 2017, eight hundred thirty-one street people died in 2017, nearly doubling the count of 458 in 2013.
The homeless mentally ill (in California and elsewhere) exist under twin, paradoxical curses: they are public eyesores. Pedestrians grimace as they step over their inert forms or cross the street to avoid their wild gestures and ranting.
At the same time, they are invisible: faceless statistics, generic, interchangeable, somehow less than human because of their madness.
Mark Rippee is one of these living paradoxes. Perhaps he should be their national symbol. His nearly faceless face is the face of the faceless: the face of our gravely disabled brothers and sisters who live and suffer and howl and die, bereft of help from government, agencies, and many churches, on the streets of our cities. Force yourself to contemplate what is left of Mark Rippee’s face for as long as you can stand to hold his sightless gaze and think about the obscenity of your country’s mental healthcare system.
This is a man who is severely, gravely disabled, living on the streets for 12 years. –Catherine Rippee-Hanson
Thirty-one years ago, Mark Rippee was a handsome and hopeful young man. At age 23, he was a productive member of the Vacaville community, a robust construction worker with a girlfriend, still mapping his life-plans.
Those plans blew to bits in an instant on the Sunday night of June 21, 1987—Fathers Day. On a dark country road, astride a Harley-Davidson motorcycle that he had owned for only a few days, Mark swerved to avoid an oncoming car that had drifted into his lane and tore through an alfalfa field until the bike ploughed at high speed into a grain harvester.
This is a man who left massive amounts of grey brain matter from his Frontal lobes lying in a dark field. This is a man who paramedics transported without sirens at first, thinking he must be DOA. –Catherine Rippee-Hansen
The impact tore a deep T-shaped gash across Mark’s face, destroying his eyes and exposing his frontal lobe, grey bits of which were found around him. His right leg was ripped open from his crotch to his ankle and broken in several places The EMTs who loaded him into an ambulance assumed he was dead until they noticed movement en route to the hospital.
Mark Rippee survived his shattering injuries. His accident, however, struck hard at his close-knit family. His father James suffered a breakdown soon afterward, entering a state of denial that led him to prohibit Mark’s twin sisters, Linda and Catherine, from securing Mark’s commitment in an institution. Six years later, James Rippee suffered a stroke and died. Mark’s mother, Lou, now 78, also commenced a long, slow decline in her health.
For eighteen years Mark managed to live at the borders of a peaceful and secure life, given the givens. His mother and his twin sisters (both of whom married) threw themselves into his welfare with the aid of a part-time caregiver. At intervals, and with support, Mark could maintain his own apartments.
The three women kept hope alive. They never lost their love for the invisible man beneath the disfigurement and the ravaged brain.
This is a man who was described as sweet, caring, willing to share whatever he has, and intelligent.–Catherine Rippee-Hanson
That hope eroded with each of the twenty-odd operations on Mark’s brain to scoop out abscesses (Mark has undergone more than fifty operations in all). Each brain surgery eliminated more grey matter. Each elimination weakened Mark Rippee’s capacity to think clearly and increased his tendencies to erratic, threatening behavior.
“He lost control of his emotions, his anger management, his reasoning,” said Linda. “There was no filter. Since the accident, he has fought depression, sleep disorder, and chronic unimaginable pain.”
Mark hallucinated. He heard voices, spoke in the personas of three different people.
“He called Travis Air Force Base several times to report that aliens were attacking,” Linda (by then Linda Privatte) said. “A voice told him to take a fork and pluck my daughter’s eyes out. He chased me with a stun gun, he began to have conversations with himself and 2-3 other people in his head.”
Mark’s psychosis deepened. He barred his mother from his apartment, yelling that he would kill her if she came in—he did not believe it was his mother. The sisters feared he would hurt her. His mother stopped caring for him; after twenty years the stress on her was taking a toll. Shortly afterward Mark was evicted for starting a fire outside his apartment door.
“He was suicidal,” Linda continued. “Mom wrestled a loaded gun from him. He has walked into traffic and tried several times to jump from a moving car. He has tried twice to jump off an overpass twice. He hates us all for saving him.”
Mark Rippee clearly was now beyond the family’s control. A few years earlier, a psychiatrist had diagnosed the young man as afflicted with paranoid schizophrenia. But Mark’s delusions had by then swept him well beyond the capacity to assent to therapeutic treatment or medications.
The sisters began to search for a therapeutic sanctuary and psychiatric care. In doing so they entered a labyrinthine world, a world that often mystifies most Americans, including relatives of the mentally ill: a world of bureaucracies piled upon bureaucracies: municipal and state government, psychiatric hospitals, police departments. A world of strange acronyms (CBT, CET, CMHC, AB, ADC, HHRMAC, SB, SHIP, SHOP—the list extends into the hundreds.) Behind the acronyms stretched a thicket of rules, restrictions, policies, protocols—all designed, it seemed, to pass the buck, evade accountability, and keep the mentally ill as far as possible from reclamatory help.
The years pass, and the trail of the sisters’ efforts grows long, convoluted, chockablock with blind alleys, false leads, rebuffs, personal humiliation. Not even Linda or CJ can fully reconstruct its nightmare skein.
Among the most infernal of the acronyms was HIPAA.
HIPAA: the Health Insurance Portability and Accountability Act. Congress created HIPAA in 1996. Essentially, it is a misbegotten tool for ensuring the informational privacy of a patient in the health-care system. In practice, HIPAA has deprived countless thousands of family members from information vital to helping them understand what is wrong with their loved one, and what to do about it. Leading advocates for mental healthcare reform have insisted that HIPAA be either radically reconceived or scrapped.
HIPAA rules prevented the Rippee family even from being able to confirm that diagnosis of Mark as a paranoid schizophrenic. (It was relayed to them by a mutual friend of the psychiatrist.) Nor could they ascertain his medication needs.
Nor could they—can they—even have him removed from the brutal mercies of the Vacaville streets and placed safely in an institution. They were—are—stymied by the monumentally absurd, fatally ambiguous system of state laws that sprang up at mid-century to counter the unintended consequences of deinstitutionalization. These laws awkwardly attempt to protect the civil rights of mentally disabled people on the street (140,000 as of 2015, as estimated by the Department of Housing and Urban Development) against involuntary commitment to therapeutic care: unless, that is, if the individual can be judged “a danger to self or others.”
The absurdity of this standard radiates from its description: how is it possible to prove that someone is a danger to self or others unless that person commits an act that is—well, one can see where one is going with this. Yet even committing such an act is no guarantee that the perpetrator will be taken under care. Consider the case of—oh, James Mark Rippee: the loaded gun. The stun gun. The threats of suicide. The threats on his mother’s life. The fire he set. The attempted jumps from moving cars and overpasses.
Yet as I write these words, James Mark Rippee remains blindly, madly, on his own; a man, in effect, without a country. Certainly without a country that gives a damn whether he lives or dies, as long as he just stays the hell out of sight.
This is a man who has no safety net at all, but has the right to die on the streets, because he can say, “No.” –Catherine Rippee-Hansen
Linda and Catherine—the latter by now suffering from cancer that has been diagnosed as terminal—turned their energies to another strategy that seemed reasonable: securing hospitalization for Mark as “gravely disabled.”
“Gravely disabled” describes one of the several lurching measures to slap a tourniquet over the worst bleeding wounds of deinstitutionalization. Encoded in two similar bills, AB 1971 and AB 2156, “gravely disabled” is the standard for which the state would intervene in an uncooperative homeless victim’s life and usher that person to shelter and treatment. A person isconsidered gravely disabled if he/she is unable to. provide for basic needs for food, clothing, or shelter because of a mental disorder of impairment such as alcoholism.
That’s the theory, at least.
Linda and Catherine—Linda, after her sister weakened from her cancer—showed up at meetings of the Solano County Board of Supervisors to encourage support passage of AB 1971. They spoke up. They wrote volumes of emails to the committee.
For their troubles, they found that “gravely disabled,” like “danger to self in others,” resides largely in the eye of the beholder: the eye being that of the agency in charge of enforcing it.
“Over the last few weeks alone, I’ve contacted more than forty-five agencies and people, trying to convince them that my brother is the definition of “gravely disabled,” Linda told me recently. “I told them he needs a conservator [a certified adult overseer], based on his family’s situation and the fact that he has been homeless for more than a decade. While I attempted to have patience, I was only told, “Thanks, we’re working on it.”
That was hardly the worst. After one early petitioning visit, Catherine reported that the Board of Supervisors let her know that they consider Mark 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.” (Other relatives of street-people in the state have reported versions of the same response.)
The sisters rejoiced when AB 1971 was passed by the California Assembly, even though it was stipulated only as a five-year pilot program, and only for Los Angeles County, not the entire state.
They rejoiced prematurely. In late August, after a rash of opposition from groups that included, with splendid irony, the California Hospital Associationand the Disability Rights Education and Defense Fund, AB 1971’s sponsors pulled the bill. The Rippees, along with tens of thousands of other Californians struggling to reclaim their helpless loved ones from the California streets, are back where they started:
This is a man who is suffering, body and mind, tormented, and in physical and mental pain every day . . . This is a man who hears voices he hates, like a broken record to the point of pure torment . . . This is a man who had medical doctors abandon him for having angry or unacceptable outbursts . . . This is a man who gets robbed of his income by people who he asks for help to use the ATM . . . This is a man who has family members who under current law cannot make decisions for him to help him . . . — Catherine Rippee-Hanson
With Catherine depleted by her disease and Lou Rippee awash in depression, Linda Privatte struggles on alone to reclaim what is left of her brother.
“I have not been able to as much as look at Mark,” she told me a day or two ago. “I’m feeling guilty about that.”
You are entitled to look away from your brother, Linda (though you won’t, not for long). It is the rest of us who are morally obligated to keep looking into James Mark Rippee’s nearly faceless face, until we accept that this man and all his gravely disabled mentally broken brothers and sisters are our brothers and sisters as well, and that we must not look away until we have inspired or shamed our country into facing them and giving them sanctuary.
For God’s sake, this is a man. He is not invisible. He is not expendable. With any humanity left in us, let us help him. This is a man. This is a man. This is my brother.
Note: on Monday, September 10, I invited two members of the Solano County, CA, Board of Supervisors to respond to comments by CJ Hanson and Linda Privatte that addressed their comments and policy positions. At this writing neither has responded. I will post any comments from them should they come in.
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