On a Friday morning in July of 2005, Ron Powers experienced the unimaginable. Soon after dawn, he discovered that his beloved son Kevin — a sweet young man buffeted by schizophrenia — had hanged himself in the family’s basement. Then, a few years later, his son Dean began to show signs of the disease as well.
In No One Cares About Crazy People, Powers weaves this personal story into a broader, longer nightmare: the ill-informed and often brutal treatment of people with mental illness over the centuries. The book’s disturbing title is taken from a political aide's comment revealed during a 2014 investigation of horrific abuses at a Milwaukee mental health facility.
Powers covers a vast landscape, from the medieval notion that demons cause insanity to Nazi extermination efforts. Here in the United States, he delves into forced sterilization as well as the flawed deinstitutionalization that began in the late 1950s and ultimately led to thousands of homeless mentally ill people.
But Powers, a New York Times best-selling author and Pulitzer Prize-winning journalist, also writes of his many hopes for healing mental illness — and society. In advance of his appearance at Learn Serve Lead 2018: The AAMC Annual Meeting in November, Powers shared some memories, aspirations, and insights.
In the book, you write about Kevin's struggles with schizophrenia. Can you describe learning of his illness and the impact on you and your wife?
We were and are a very tight knit family. We cherished our sons. We learned about Kevin’s disease by degrees, so we absorbed it gradually. In 2002, when he was 17, he had his first psychotic episode [and we weren’t quite sure of the cause]. He eventually was able to return to school, but then he had another series of psychotic episodes. With each stage of reality, we fortified ourselves a little more deeply, and we tried to get him the right treatment in any way we could. He was a charming, wonderful kid, [but at one point] he was adamant: no more meds.
We have said that we really lost Kevin twice. We lost him to his illness, and we lost him to his suicide.
What do you feel comfortable sharing about the horrific experience of losing your son to suicide?
It's not that I'm reluctant to talk about it. It’s just so hard to put the feeling into words that really describe it.
The moment I discovered Kevin on that Friday morning, I had a momentary, nanosecond of insight of the kind you rarely have, and which was gone almost as soon as it happened.
It was, “Yes.” I knew this was coming. It had to happen. And then it was gone. Because in my conscious life I didn't really think that Kevin would kill himself. But then there was something in my deep unconscious that was trying to prepare me for this event.
Can you talk a little bit about Dean's experience?
In Dean’s case, we were lucky that a psychiatrist prescribed a monthly injection instead of oral meds, which can be so resisted [by people who lack awareness that they are ill]. The psychiatrist said, ‘If you stay on this regimen, you’ll get better. If you go off it, you’ll be back in this hospital again.’ And it took a few years, but it has worked for Dean. He’s stabilized greatly. He’s progressed from being surly and alienated because of his illness to being a contributing member of our household.
Your book is a painful glimpse into a history of mistreatment of people with mental illnesses. What’s your sense of why people sometimes fail to “care about crazy people”?
That is the big question. It’s possible the answer is pretty simple. It could be primal fear. You fear what you don’t understand. There’s a kind of revulsion toward the mad.
It’s possible people unconsciously feel that mentally ill people are less than human or are somehow responsible for their condition. And this leads to the powerful need for education about what causes mental illness.
What would you like to see done to better support people with mental illness?
We need to elevate the topic of mental health reform to the status of a civil rights issue. And we need to labor relentlessly to keep this issue alive because it could die of apathy at any minute.
We need to address the false idea that people have a right to be crazy if they want. EMTs and police — who need better training — and psychiatrists must be given more latitude in intervening in a psychotic episode to separate the psychotic individual from harm and get them treatment. The strict “harm to self or others” rule [required to intervene] was well-intentioned but must be re-examined. We don’t need more people “dying with their rights on.”
Also, HIPAA [the Health Information Portability and Accountability Act] prevents providers from telling family what’s going on. That certainly worked against us. Part of any reforms should include a strong reconsideration of HIPAA.
Ultimately — this is really pie-in-the-sky — but I think it’s time at least to plant the seed of a Cabinet-level department of mental health.
As you note in the book, huge numbers of people with mental illnesses wind up in prisons and jails. What are your thoughts on that?
We have to reform our criminal justice system. Judges too often are not informed about mental illness and see it as aberrant behavior that needs to be swept away. Our jails are filled, and many people in them have mental illnesses. Jails are our de facto mental asylums now.
People are often thrown into solitary confinement, which I believe must be universally abolished. The lack of human contact makes people psychotic, and people who are already mentally ill deteriorate. Jails are laboratories for getting worse.
In what ways would you like to see the medical community contribute?
I’d like to reinforce a social mandate, a sense that their work involves not only looking into mental illness and the people who suffer from it, but also helping educate the community-at-large about what brain disease really is. There’s so much superstition out there that has to be replaced with science. I think the medical community can help evangelize that message.
You talk about the ways that people with mental illnesses can enrich our lives. Can you give an example?
One would be compassion. We are not a compassionate country, certainly not these days. The act of being compassionate helps the soul. Although we sometimes don’t recognize it, being of use to others is a yearning of human nature. In reaching out toward these dispossessed people, we improve our own temperament. We improve our own meaningful connection to the world.