Health Affairs, 22, no. 3 (2003): 189-193 doi: 10.1377/hlthaff.22.3.189 © 2003 by Project HOPE	New Online   Obama's Success & Next Steps   3 Health Policy Options for President Obama   A Hybrid Proposal   Bipartisan Compromise

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Narrative Matters

From The Talk To The Walk

So I went. Frank’s project, Survivors On Our Own (SOON), had been given the use of three small, run-down cottages by the Arizona State Hospital, the state’s psychiatric facility. The scene had a concentration-camp aura about it: a tall wire fence surrounding a brown monotone building; dirty-white cottages scattered along the hospital’s northern perimeter, interspersed with gnarled mesquite trees and an occasional cholla cactus; small groups of people sitting listlessly around small tables in the shade behind the cottages, smoking and talking in low voices, staring vacantly into the desert dust, and hovering close to the ground in the stupefying 110-degree heat.

I pulled up in front of the cottages and stepped out of my car to suspicious glances and a few hostile stares. I was, after all, the "suit"—the dispenser of money, the health policy expert, the convener of community groups, the developer of "strategic partnerships." In the world of health grantmakers and community leaders, I was an insider, a conduit to money and influence. But to the survivors sitting around these tables, I was an outsider, someone not to be trusted. Later I found out that a few vagrants who weren’t part of SOON but had dropped by for a free meal thought I was there to kick them off the property.

Frank, a fortysomething ex-sportswriter who told me he had been diagnosed with acute schizophrenia at the age of twenty, greeted me at one of the cottage doors. Dressed up for the occasion, he wore a clean shirt and pants. He was obviously pleased that I was there and took pride in showing me around.

"We’re all consumers here," he said, as we walked through the cottages and around the grounds. "We can’t expect people to take care of us forever. We have to take care of ourselves."

So began a five-year friendship that is still intact today, although it has had its ups and downs. After our first visit I was impressed enough to recommend that St. Luke’s Health Initiatives help SOON to purchase a van so that the group could transport people to community activities. From there our grants to community health organizations gradually became more targeted to supporting grassroots community organizing and advocacy, including support of a number of consumer-based mental health groups. Frank drifts in and out of this work, depending on what’s going on in his life.

On his good days, Frank is a witty and intelligent conversationalist, full of wry and penetrating observations about health care and mental illness, the state of what he calls a "sick" commercial culture, and especially sports. On his bad days, Frank leaves rambling, incoherent messages on my answering machine at 2 a .m.; shows up at my office unannounced in soiled clothes after walking aimlessly about the city for three days; or berates me for making him ride the bus and not personally delivering him to a dental appointment that I arranged for him.

Frank refers to himself as a "prosumer"—a professional health care consumer whose job it is to articulate the difficulties that people with serious mental illnesses face in getting the care they need. He occasionally gets small stipends from local mental health service providers to speak to family and consumer support groups about how they can begin to break down the barrier of stigma against the seriously mentally ill and how they can lobby for more community-based mental health services. He’s a skillful writer of letters to local newspapers about mental illness, and he manages to find small projects to occupy his time, although these wax and wane with the frequency of his medication problems.

Things You Learn From Lunch

Top Things You Learn From... Different From Other Businesses Seduced By Talk Lighting Out For New...

 
Not long after I met Frank, he introduced me to Gary, a single man in his mid-forties with a history of major depression. Like Frank, Gary lives alone in a low-income apartment building on nothing more than his SSI (Supplemental Security Income) check. He refuses to take medication for his illness because of side effects, and on sheer willpower alone he forces himself to leave his apartment to engage with other people.

Occasionally the three of us go out to lunch at a nice restaurant. It’s a major social event for Frank and Gary, and it always gives me more insights into the world of the seriously mentally ill than do all the conferences and reams of studies that examine how to improve the "system." Gary calls it the "anti-system." Like the Antichrist, he says, the existing anti-system is everything a good system is not: inflexible, bureaucratic, unresponsive, and inhumane.

"I see my case manager maybe once a month," Gary tells me, between bites of his cheeseburger. (The case manager is from a private behavioral health provider that contracts with the county for Medicaid-eligible and special populations.) "She has, what, a caseload of thirty or more people? No way can she handle it. She comes by with a food basket, and if I’m not there she leaves it by the front door, where of course it immediately gets ripped off. I don’t see her again for a month.

"A lot of these case managers are young women just out of college. They show up in tank tops and unbuttoned shirts with their cleavage showing. I’m like, you know, a normal red-blooded man. I notice things like that. It’s not professional at all, but they think that just because we’re all supposed to be locked up in our apartments and zonked out on meds, they can dress any damn way they please."

Frank concurs and brings up a different twist on the issue of professional attire. "I learned a long time ago that if you have a mental illness and show up at a meeting wearing a coat and tie, they think you can’t possibly be mentally ill and don’t really need help. If you need a job, the worst thing you can do is dress up for the interview. If you’re disheveled, glassy-eyed, talk slow, and don’t look at people directly, they think, ‘Yeah, this guy’s mentally ill, he needs help, we’ll give him a job and feel good about it.’ If you look like them—if you dress straight, talk straight, and act straight—they won’t give you the time of day. I learned how to play that game a long time ago. The most I do now is put on a clean shirt."

All this talk is interesting but depressing, and I tell them so. "Look," I say. "Every day I listen to people trash the system. Legislators trash it, providers trash it, consumers trash it, family members trash it. What you end up with is a culture of trash. Everyone’s a victim. They’ve been down for so long that they’ve come to depend on it for their identity. Forget that. Tell me something positive. Tell me something that we can do to improve the system."

They consider this. Finally, Gary says, "Just do what you’ve been doing. Go out to lunch. Tell your story about hope and empowerment for the mentally ill. That’s all any of us want. We want someone to listen. We want to be taken seriously."

Different From Other Businesses

Top Things You Learn From... Different From Other Businesses Seduced By Talk Lighting Out For New...

 
He’s right, of course. We all want to be taken seriously—to be treated as human beings with self-worth and a personal history. If health care is just a commodity, the health care system just a business, and we nothing more than consumers in a market, I don’t see how we can connect with each other at these deeper levels at all. What distinguishes health care from other businesses is the sheer vulnerability of people like Frank and Gary. The same goes for many of us who at some point in our lives will have to deal with trauma or serious illness. When you’re rushed to the emergency room at 3 a .m. following a heart attack or an intense psychotic episode, you’re not a consumer. You’re not looking for burgers and fries or a "branding" experience. You’re in sheer terror and pain. You desperately seek comfort, care, and healing. No amount of reinventing health care in the image, techniques, and language of business alters that fact.

People in health care know this. In my work I talk to doctors, nurses, and caseworkers who were drawn into the health professions because of a deep ethical commitment and desire to help others. But they are increasingly alienated from their work by a suffocating overlay of business rules, practices, and jargon. It’s one thing for a physician to admit that she is in a customer-service business; it’s quite another for her to treat her patients merely as consumers of her technical bag of tricks. When that happens, the deep connection between patient and caregiver is broken. No wonder so many health professionals are heading for the exits.

Seduced By Talk

Top Things You Learn From... Different From Other Businesses Seduced By Talk Lighting Out For New...

 
Lately I’ve been thinking about the severing of connections in the context of my foundation’s work in mental health and access to care for underserved populations. The word populations is commonly used in the foundation world, but I’ve never met a population. I’ve only met individuals, each with a story to tell. Those of us who work daily in health policy research and advocacy tend to get so wrapped up in talk about the people we’re trying to help that we mistake the jargon for the goal itself. In our desire to improve life for needy people through studies, projects, and formal evaluations, we reinforce the barriers between our work and the real flesh-and-blood people we want to reach. Mostly we end up working for each other and talking among ourselves. After all, life from 30,000 feet is our model; it’s what we’re used to.

Sometimes I think that I should jettison the policy and "strategic investment" business and go out and help people, one person at a time: Take someone to lunch, listen to them describe their life, hook them up with health care, help them get a job. When I find myself doing this—with Frank and Gary, for instance—it has never been the result of a program initiative. It has occurred by accident, by finding myself in a situation where I could help. My Protestant guilt tells me, if you don’t do this, who will?

In the health foundation world, we say that we want to know that we are making a difference in people’s lives. But sitting in our offices, we find it so easy for health care policy to become an abstraction that is filled with the reification of life but is not the experience of life itself. In the environment in which we move, it is comfortable—and seductive—to disappear completely into a world of lofty talk about consumers, market share, margins, and cost-reimbursement studies. It’s like painting a house and never getting any paint on you.

Lighting Out For New Territory

Top Things You Learn From... Different From Other Businesses Seduced By Talk Lighting Out For New...

 
There’s no quick fix for this situation. I face a constant struggle between the abstract world of health policy and the quotidian, Frank-and-Gary world of personal hopes and fears, triumphs, and disappointments. When the struggle ceases, it will probably be time for me to think of doing something else.

As for Frank and Gary, life has taken a different turn. I still occasionally see Frank, but less these days since he had a run-in with the police after being accused of stalking a community outreach professional whom I had introduced to him at a mental health conference. She is friendly by nature, and Frank apparently mistook her sociability for something else. He became obsessed with seeing her, one thing led to another, and one evening the police carted him off in front of her house.

Frank told me later, through phone messages left in the early morning hours, that she and the police had completely misread the situation. He wasn’t stalking her, he only wanted to talk. Didn’t they know that he would never intentionally harm another person? Didn’t I see that this was just another blatant example of discrimination against the mentally ill?

Things are apparently looking up for Frank. He has been talking on the phone with a woman from Tucson whom he met through a service that links people with disabilities. Not long ago a colleague and I took him with us to Tucson, where we were attending a mental health conference. We dropped him off in front of a large Section 8 housing project and picked him up six hours later. He came out beaming and talked nonstop all the way back to Phoenix.

Meanwhile, Gary decided that he had finally had his fill of living alone amid the gangs in his low-income apartment complex. He moved north to a small town to live with his eighty-year-old mother, who also has a serious mental illness. "It’s quiet there and she needs me," he said, matter-of-factly. "I’ll figure out what I’m going to do next after I get there."

We had lunch before he left. I told him that I was thinking about writing about our relationship and how it fits in, or doesn’t, with my day job. He asked what publication would print it and who would read it. I told him that the readers are people with Ph.D.s—policy and research types who studied health care stuff morning, noon, and night. "Yeah? Well, be sure to tell them about my ideas about the mind," Gary said. "You know, how the mind is just a metaphor, and how you can’t really lose your mind because you never had it to begin with."

The last thing he said to me before I dropped him off was, "I’m lighting out for the territory. Me and Huckleberry Finn. Wish me luck."

Good luck, buddy. And Godspeed.

Editor's Notes

 
Roger Hughes has engaged in foundation work for fifteen years. He is executive director of St. Luke’s Health Initiatives, a health conversion foundation in Phoenix, Arizona. He was previously executive director of the Roy J. Carver Charitable Trust in Muscatine, Iowa. Names in this narrative have been changed to protect people’s privacy.

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