Remarks to the Cambridge NAMI
Thank you, Cambridge NAMI, for inviting me here. And thank all of you for coming tonight.
Schizophrenia has struck hard at the Powers family. In 2002, our younger son Kevin experienced the first of several psychotic breaks that worsened over three years despite intense counseling, hospitalization, and a regimen of medication until the voices in his head instructed him to take his life in our basement in Middlebury, Vermont, in July 2005, a week before his twenty-first birthday.
He had secretly stopped taking his medication several weeks earlier; and we are pretty certain that the voices, in the form of anosognosia, had a hand in that decision as well.
Kevin’s first break, by the way, attacked him just across the Charles river, at the Berklee Academy of Music. Kevin was a brilliant guitarist, as well as a kind and witty and untroubled young man: a golden-haired, blue-eyed burst of sunlight.
Sometime after that, Kevin’s older brother Dean started showing symptoms as well. He had his own series of breaks over a period of years. Dean has survived and stabilized, and is living with us at age 35. Honoree and I believe that Dean was spared a deeper psychosis thanks in part to an enlightened psychiatrist in our state.
This doctor understood the hazards of trusting a young sufferer to remain on oral medication voluntarily. So he arranged for Dean to report once a month to a clinician who would administer his antipsychotic med by way of a needle. For those of you who are interested, the medication is Haldol. If Dean missed an appointment, the doctor, as well as Honoree and I, would know about it.
In nearly four years, Dean has not missed an appointment. He has recovered much of the gentleness, the charm, and the intelligence that we’d thought had disappeared forever in the early months and years of his affliction.
You can find a lot more of the Powers family saga in NO ONE CARES ABOUT CRAZY PEOPLE. And you can see lots of photographs of Dean and Kevin, and listen to the wonderful guitar music they made together, on my blog, which is the title of my book, all one word, plus “dot-com.”
Now, I didn’t come here tonight to plug my book; or really to talk about my family. I offer you the information I’ve just given as a way of establishing my bona fides: the qualifications that have made Honoree and Dean and me eligible for citizenship in what I call the “sub-nation.” The mostly invisible realm of the seriously mentally ill and those who care for them. People such as you.
“Serious mental illness,” as most of you know, refers not to simple depression, or neurosis, or alienation from society. “Serious mental illness” refers to incurable, genetically delivered brain disease: schizophrenia, schizoaffective disorder, bipolar disorder; and, to a lesser degree of consensus, autism.
I come here tonight as an advocate. Advocates for mental-health reform are almost always people from the “sub-nation.” Beyond our borders, the country at large remains mostly oblivious to who we are. (We are their neighbors, quite often.) The country remains uninformed about the medical nature of the afflictions we battle. The country remains unconcerned about the abuses that victims of the disease suffer at the hands of untrained police, clueless judges and jail wardens, budget-cutting politicians, and moralists of all stripes who conflate insane behavior with bad character. To some extent, the ironic title of my book is accurate: Nobody cares about crazy people.
And this is what motivated me to become an advocate, above and beyond my family’s personal experience: I’ve been stunned by the education I received after my book was published last March.
I had thought I knew how bad things were. I wrote about how bad things were.
I didn’t know how bad things were.
Not completely. Not down at Ground Zero. Not in the daily life inside the sub-nation, where abominations pile up and travesties of justice go uncorrected and mothers of insane children plead for help and even mercy that fall on the deaf ears of bureaucrats and doctors and law enforcement. No matter how loud they shout.
My post-publishing education began when I stumbled into a domain where I could hear those desperate voices. I’m sure that many of you here tonight got there ahead of me.
I got there through the kindness of a reader of my book. She invited me to join a Facebook site dedicated to private and confidential conversations among the caretakers of the schizophrenic, the bipolar and the autistic. Nearly all of these site members are mothers. Go figure.
The rules are few, simple, and strictly enforced: no judgmental posts. No hostility or abuse. And no reposting of any material on the site without permission of the writer.
I have visited this site nearly every day; it’s called the Circle of Comfort and Assistance Community; and its founder, the educator and advocate Deborah Fabos, has given our sub-nation a precious resource.
I read these testimonies with shock and astonishment. I read them with a sense of grief. And I read them mounting outrage. I am keeping files of them written by mothers who have given me permission. I’ve used their stories in previous blogs, and this evening I am giving you a sneak preview of tomorrow’s blog. It is essentially the text of this talk. Its focus is on a family that is among the unluckiest, most damaged, most neglected, and most desperately in need of intervention and justice of any that I know of. And I know of a lot of such families.
This is the family of Dan and Kimberlee West of Fruitport, Michigan. Their story is one of frantic struggle: a struggle to rescue their schizophrenic stepson, Tyler West, from more than six brutal months in the Muskegon County Jail. Much of this time in solitary confinement. He has been severely beaten by a violent cellmate, and is in imminent danger—as we gather here—of another beating by another cellmate. The charge that landed Tyler in jail, and for which he has not yet been tried, is at once laughable and heartbreaking in its pettiness and meanness.
Here are some features that should make the Wests a poster-family for all that is wrong with our courts and criminal-justice system as they affect the mentally ill. And if I have anything to do with it, they will be.
Dan and Kimberlee West are pillars of the Fruitport community. They would be pillars of any community. They have four children of their own; they’ve taken in three other adopted children besides Tyler, and they have served as foster parents for several young refugees from the Middle East. Kim teaches Sunday school and volunteers for projects around town.
Tyler is about 5 feet 5 inches tall, and weighs about 150 pounds. His mother calls him a gentle boy, and a psychiatrist who evaluated him describes him as “sweet.” He plays five musical instruments, composes music, and is talented in computer design. His joys in life so far, and there have not been many, include playing timpani in his school marching band.
Tyler West has struggled with mental illness since birth. Dan and Kimberlee adopted him at age 7, knowing that he had already been diagnosed with pervasive development disorder, sensory processing disorder, and ADHD.
But if the life inside his head was a nightmare, the life outside it was as well.
Tyler is dark-skinned, and so his new schoolmates thought it would be a good idea to call him “nigger” and beat him up for it. He is small, so they called him a fag, and they beat him up for that too. Tyler does not process information easily and has trouble putting words to his thoughts, and that made everybody mad, so they beat him up for that as well. The beatings lasted through his high school years. His mother believes he has received more than a dozen concussions.
His diagnoses grew more severe: mood disorder at age 12. Autism and bipolar disorder at 16. The psychotic symptoms started showing up less than a year later. He has admitted to hearing voices. He has made several attempts at suicide, at least once by hanging himself. His parents took him to emergency rooms fifteen times in 2015 and 2016. At one care center, they pleaded for a long-term commitment, but they were denied, even though a psychiatrist admitted that Tyler could not understand the consequences of his actions. At another, a county-financed quote “wellness center,” Kimberlee and Dan begged for a civil commitment, through an assisted outpatient treatment program known as Kevin’s Law.
Brace yourselves for the “wellness” folks’ reply. They said they didn’t know how. And Tyler’s lack of critically needed treatment and medications continued.
So now we come to the sad part of the story:
At age 16, Tyler vanished for a few hours with a 14-year-old girl. The girl’s parents filed charges of statutory rape, even though a doctor found no evidence of sexual contact and both of the young people denied it. The Wests entered a guilty plea to spare Tyler the ordeal of a trial, because by then Tyler was speaking in gibberish and lapsing into catatonic states. His attorney was later allowed to withdraw the plea. Yet the imprint of this episode
Shortly after that, police found Tyler in a neighbor’s garage. Despite clear evidence of psychosis, a judge decided that the boy was sane, because he had taken his shoes off before entering. One could of course argue exactly the opposite.
Tyler did 90 days in the Muskegon County jail. Ten of them were in solitary confinement. After that, Tyler’s reasoning capacities were pretty well shot, and so was his reputation with the Muskegon police and court system.
This brings us to the wee hours of February 16 of this year, when Tyler’s fragile world came fully crashing down.
Sometime in that night, Tyler, in yet another state of psychosis, wandered across the family lawn and onto the property of another set of neighbors. This couple was sleeping upstairs. Tyler opened an unlocked door, walked over to a sofa, and fell asleep himself. When the neighbors discovered him, the wife insisted on calling the police, and Tyler was arrested on a charge of home invasion.
Back to the Muskegon County jail for Tyler, where he has remained ever since—more than six months. He is awaiting a trial that always seems to need getting postponed, or continued, or otherwise put off. The latest promise is a jury trial set for November 28th. If he survives. He has been moved back into a unit that houses violent offenders, and his new cellmate is awaiting trial on charges of armed robbery. For no particular reason, he has had four additional visits to solitary confinement: in many experts’ opinion, and mine, the most destructive, barbaric, unnecessary and probably unconstitutional form of legal torture available in the United States. During his last stint, he could be heard beating his head against the wall.
Kimberlee and Dan West are at the point of nervous exhaustion. As Kimberlee said in a recent email, “Ty still is not well. He is having chest pains because they refuse to give him acid reflux meds. I believe has a staph infection on his foot. We have bought every cream known through the commissary. Not one works. [The nurse] refuses to look at it. He needs antipsychotic meds that work. They refused him an MRI for his head injury [suffered in the fight]. No psychiatrist has looked at him. The [jail] doctor serves 600-700 inmates. He is there only on Fridays.”
Kimberlee concluded: “Presently I believe it is God’s grace that has kept him alive.”
Pardon me for sounding irreverent. God seems to need a little backup. It is up to us to provide it. We sure as hell can’t count on the State of Michigan. Michigan is possibly the most benighted state in the Union when it comes to enlightened mental health care.
Tyler West psychiatric the minute he entered the Muskegon County Jail But as we’ve seen, this jail has no mental health officers and no crisis intervention teams. In fact, Ty should not have been sent to jail at all; he belongs in a psychiatric hospital. But good luck with that. Michigan is a national leader in psychiatric bed shortages. Experts believe that fifty psychiatric beds for every hundred thousand people is the minimal acceptable number. Michigan offers ten beds per hundred thousand. That is about 680 beds for five thousand patients in psychosis.
About twenty years ago, the Republican governor of Michigan, like so many clueless governors, decided that his state had too many mental hospitals and not enough patients to fill them. He started shutting them down. In the six years leading up to 2003, he closed 12 of the 16. Today the number is down to nine. The state saved a lot of taxpayer money. And it now provides the sixth-lowest number of psychiatric beds per capita in the nation. Michigan is hardly alone, of course. America has a collective shortfall of 95 thousand such beds.
But what the Michigan system lacks in psychiatric care, it more than makes up for in vengeance. Michigan has 93 county jails, with a total inmate capacity of more than 18 thousand. Most of these people have not been convicted of anything. Like Tyler West, they are awaiting trial. About two thirds of them have some form of mental illness. And they are not getting help. No treatment. No meds. But lots of pain.
We are talking here about one of the most obscene facts of American life and American public policy: the criminalization of mental illness. This criminalization is built of many shameful parts. One is fiscal greed: shut down those expensive hospitals and don’t waste money on jailhouse shrinks. Another is denial: Tyler West took his shoes off, so he had to be sane when he entered that garage. Still another is plain human cruelty: build more jails, and throw psychotic kids like Tyler West into them and put ‘em in cells with violent criminals, and let’s see what happens.
But there is one element that underlies all these shameful parts and makes them possible. That element is ignorance.
Widespread, ironclad, and probably self-willed ignorance. Ignorance not only among the public, the electorate—but ignorance among those who have the responsibility to know better: federal and state legislatures. Judges. Jail wardens. Police departments. Professional caregivers.
Every category I just mentioned had a chance to help save Tyler West. And all the Tyler Wests in all the hellhole jails in this country.
Every category failed.
Ladies and gentlemen, I am angry.
I’ve felt angry and helpless since Kevin died and Dean was stricken. It’s taken me a while to figure out what to do with these feelings, but I’m getting there. The book was one step. My advocacy is another.
I challenge you to join me. Join me in focusing the anger we all feel, and shrugging off the helplessness.
I challenge you as individuals and as members of Cambridge NAMI. And I call out a challenge to national NAMI, to frankly get off your butts and work hard to make Tyler West a national symbol: a symbol of all that is defiled and broken in our country’s mental healthcare system.
Write letters: write to Michigan governor Rick Snyder. To Circuit Court judge Timothy Hicks. To Muskegon County Sheriff Michael Poulin. (These names will be in the text of my talk on tomorrow’s blog. Noonecaresaboutcrazypeople.com.
We will secure justice for Tyler West. And when we’ve accomplished that, we will move on to the next Tyler West. And the next, and the next. You may follow my blog for the names and stories.
I challenge all of you to join me. And for those of you who may doubt the value of our effort, I will close with the words of a man who used to live and work around here:
For all those whose cares have been our concern, the work goes on, the cause endures, the hope still lives, and the dream shall never die.