From the Oregonian, December 29, 2005
Donita Diamata, director of consumer affairs for Cascadia Behavioral Healthcare, is managing two thorny problems.
For one, she’s mediating between an upset advocacy group of 14 Cascadia clients, whom she helped organize, and the person they are unhappy with, who happens to be her boss.
At the same time, she says later, her obsessive-compulsive disorder has kicked in, and images of herself flipping over the conference table and scattering papers and people flash unbidden through her mind.
Diamata sits calmly, arms crossed.
Her job, oddly enough, includes organizing and directing dissent within Oregon’s largest mental health care provider for poor adults and children. She also has to make sure the complaining stays constructive, or it could threaten another important role: sounding board and real-world adviser when Cascadia’s leaders make plans that affect clients.
The advocacy group feels blindsided. They look at Cascadia’s planned changes for client drop-in centers, long low-key respites from a stressful world, as a “sneak attack.” Diamata’s boss listens, admits mistakes, but sharply warns the group about personal attacks on Cascadia staff.
To beat back the flashing pictures, Diamata runs through the U.S. presidents’ names in alphabetical order in her head, one of her favorite tricks. Then she delivers a trenchant commentary, reminding group members that they persuaded Cascadia to postpone the decision because of their objections. “I feel very good about the outcome of this,” she concludes. “I was kind of rooting you on. But I didn’t know if you were going to organize or you were going to lie down.”
At age 40, Diamata is one of the highest-level managers in Oregon’s mental health system with an openly acknowledged mental illness. That puts her at the front of a decades-old civil rights movement to give people with mental illnesses more control over their medications, their jobs and their lives.
Her journey has included hospitalizations, psychotic breaks, prescription-drug-induced blackouts, a stint on welfare and a job-endangering nine-month leave of absence just two years ago while she battled depression.
It also has included 13 years of activism on behalf of people with mental illnesses, multiyear stretches of being highly productive and medication free, a passion for geography and international travel, a 330-page manuscript for a love story –and a growing devotion to crystal-clear candor.
“The more honest we are, the more open, the less stigma there’s going to be,” Diamata says. “It’s sort of like the gay-rights movement. Everybody knew they were out there, but nobody wanted to address it.”
Two years ago, the President’s New Freedom Commission on Mental Health issued a report sharply critical of the nation’s mental health care system, echoing long-standing concerns of mental health activists.
Ideally, the commission said, the system’s focus would be working with individual clients on holistic treatment plans that help them better participate in society. Instead, it’s more focused on cookie-cutter diagnosis and treating symptoms, including a heavy reliance on drugs.
Among the commission’s findings:
- Up to 7 percent of U.S. adults have a serious mental illness in any given year, but only a third are employed.
- People with serious mental illnesses are the largest group on Social Security’s supplemental income rolls.
- More than two-thirds of people with both serious mental illnesses and college degrees earn less than $10 an hour.
That bleak picture stems, in part, from social stigmas, the commission says. Employers fear people with mental illnesses, even though studies indicate a tiny fraction have violent tendencies. And employers can overestimate the hassle factor. They often think of people with mental illnesses as constantly sick and unreliable, though most have periodic and often widely spaced episodes.
People with mental illnesses can also “give in and give up,” Diamata says. Doctors and therapists often discourage patients from working, she and other activists say. And the mental health system fosters a reliance on drugs over self-determination, activists contend, the quick fix over the hard work of balancing medication with good nutrition, therapy and healthy relationships.
That insight sparked the mental health consumer movement, which traces its beginnings to 1970 and the formation in Portland of the “Insane Liberation Front.” The front, like the movement it helped spawn, began with an anti-psychiatry bent, seeing medications as harmful and mental illnesses as figments of the medical establishment’s imagination.
A significant wing of the movement still feels that way. Other advocates just want patients to have more control over treatment and medications, which they say have helped thousands cope with life.
Those different factions converge periodically for an alternatives conference.
“People are really passionate, and a lot of them have been harmed by the system,” Diamata says. “But you get us all together and we’re not violent. There’s 500, 600, 700 people, and we’re pretty civilized. We’re eating with knives and forks.”
In 1992, Diamata didn’t know a thing about the consumer movement. She had been hospitalized multiple times. She lived on welfare. And she had applied for disability, thinking she couldn’t hold down a job. “I could easily have made a career out of being a mental patient,” she says.
She moved with her parents and four brothers and sisters to Portland when she was 13, later graduating from Franklin High School. She was hospitalized for the first time at 21.
Diamata had moved out of her parents’ house, had a job raising money for charity door-to-door, and was studying at Portland Community College. The stress of all those changes, doctors told her, triggered depression and a severe obsessive-compulsive episode.
She would obsess about eating, and get too thin. She’d make long lists of numbers that she would count and recount. She downed medication. But the side effects caused all sorts of problems. Her hands would shake so badly she couldn’t draw or paint, activities she turned to as therapy in down times.
Diamata also has Tourette’s syndrome, which causes involuntary movements or tics. More recently, she has been diagnosed with bipolar disorder, marked by periods of depression and mania.
In 1992, she spotted a help-wanted ad for Mind Empowered, a drop-in center where people with mental illnesses could unwind, share stories and support one another. It turned out to be next door to her apartment near Southeast Belmont Street.
Mind Empowered actually wanted workers with mental illnesses –the interview was the first time Diamata discussed her illnesses openly with a prospective employer. It was also the first time she heard of the consumer movement, which her interviewer had to define for her.
“When I started working at Mind Empowered , I was a walking pharmacy,” Diamata says. ” I was taking at least seven or eight kinds of medications, and I expected them to fix everything. I’d drink. I wouldn’t eat right or take care of myself. With the medication, I didn’t have to have any responsibility over my own actions.”
Diamata weaned herself off prescription drugs over the next six years as she helped run the drop-in center at Mind Empowered . In 1997, as the center ran out of money, Diamata shopped it around to Multnomah County’s various mental health providers. Only one bit: Network, Cascadia’s precursor.
Network chief Leslie Ford hired Diamata to help start a consumer run drop-in center within the agency. Today, the Renaissance center still operates at Cascadia’s clinic on Southeast Division Street and 43rd Avenue, along with four other Cascadia drop-in centers.
It didn’t go smoothly at first, Diamata says. The center, staffed by people with mental illnesses, was relegated to the night shift, while a traditional program operated during the day.
She and other center workers had to enter through the back door, then meticulously clean and rearrange furniture so it looked like they’d never been there, Diamata says. “The idea was that no one would ever see us.”
Ford, now chief executive of Cascadia, oversees five large mental health clinics and 767 housing units for people with severe mental illnesses. Attitudes toward clients still need work within the agency –“It’s unbelievable, but there had been kind of a classism approach,” Ford says, with some workers considering themselves above the clients. Diamata has helped change that, she says.
John Shatokin, 57, sits on the Cascadia client advocacy council. Recently, he and other clients met with Ford to air concerns. “Donita gets us in the door with the people making the decisions,” says Shatokin, who has been diagnosed with clinical depression. “Without her, I think it’d be, ‘This is the way it is, folks, and that’s it.’ ”
Bob Nikkel, who heads Oregon’s Office of Mental Health and Addiction Services, has been the target of much of the lobbying organized by Diamata and has known her for 10 years. “She’s very straightforward, but she doesn’t jump on the table and pound her shoe,” Nikkel says. “She just has incredible credibility. People gravitate to her, so she can kind of work behind the scenes.”
Diamata is helping create a network of consumer advocacy groups, which write letters to politicians and bureaucrats and speak up at legislative hearings. She also preaches a gospel of self-determination with Cascadia’s clients, meeting them in groups and one-on-one. She’s helped develop a guidebook to help clients control their lives, and she’s working on another for building a career.
Diamata’s goal is to get people with mental illnesses involved in changing the system. By that yardstick, she says, her work is further along than it’s ever been.
But, she adds, this is also her toughest time of year.
Since she was a child, Diamata’s moods have turned with the weather. Her birthday falls in October, and it was on the morning of her 8th birthday when she felt the first sure touch of mental illness, a depression that blew in unsuspected.
“I remember that day –as an 8-year-old –thinking how I had wasted my life and hadn’t accomplished anything,” Diamata says. “This was not a family of high achievers; there was no pressure to be a genius. It came from inside me.”
She had been a notably fearless kid, a leader. Then she started to obsess about not stepping on cracks. She counted her paces to and fro, set on specific numbers. She became certain that parked cars were going to back up and crush her.
Today, it’s hard to detect she has any health problems. She’s high energy, her friends and relatives say, but controlled. She’s a wisecracker, opinionated, a deft conversationalist.
The uninvited images are her most common symptom, sometimes arriving midconversation. But the “tells” are subtle to outsiders –she breaks eye contact or looks down at the table or a sheet of paper while she runs through her mental routines to control them. She’s also accustomed to that battle. “It makes for a really active brain,” she says.
Diamata’s parents, much of her family and several close friends live nearby to provide support. But even when she’s having a lot of trouble, it can be hard to tell, says her younger sister, Dion Plamondon. It’s not always clear where her personality ends and illness begins.
“She’s just this powerhouse –if she wants to get something done it will get done, forget about sleeping and eating,” Plamondon says. “That can be good and bad. It crosses over into obsession really easily. But that’s just her. That’s always been her way.”
In fall 2003, Diamata had been off medication for five years, and her symptoms were under control. Then cuts to the Oregon Health Plan came down. She had to help lay people off. A colleague committed suicide. For Diamata, a familiar pattern began.
She describes it this way: A dialogue starts in her head, usually when she’s trying to go to sleep at night. She doesn’t like what her life has become. The future is bleak.
Apathy sets in, but she can’t sit still because stress boosts the Tourette’s, too, so she’s bouncing off the walls. Her reasoning ability drops. Then the compulsive disorder flares. She counts everything, each action follows a strict routine. The obsessions help shield her from her dark thoughts, but they also isolate her from friends, family –and work. “I became ridiculously stubborn,” Diamata says. “I’m just daring them to fire me.”
Diamata left work in September 2003, briefly returned in December, then left again until July 2004. In between, she got booted out of an eating disorder program after she tried to organize a revolt, insisting the clients should be running the show. She went back on Haldol, an antipsychotic, and ended up in an emergency room, her muscles frozen, unable to talk or signal the nurses calling her name.
When she returned home, she had a psychotic break she blames on the drugs, going from coherence to mumbling nonsense in one evening while a friend watched in alarm. Her friend took her back to the hospital.
She returned to work for a few months, but last year, shortly before Diamata’s 39th birthday, the depression hit again. By early December, she packed her bags full of prescription medications and planned to check into a motel to take them all that night. Then she paused, looked back at her house and saw it was dirty. She started cleaning and ended up working through the night.
The obsessive-compulsive disorder “kind of saved my life,” she realized later.
This time, she made a plan to work from home with the OK from her boss, Paul Potter. Ever conscious of numbers, she challenged herself to write a book in 39 days. She worked on Cascadia business during the day, then wrote much of the night despite the incessant tics of Tourette’s. “Everyone thought I was crazy,” Diamata says. “They thought I was writing gibberish.”
In 36 days, she had her novel, “Turning Stones,” a story about an isolated woman who finds her love in the spirit world.
She was back in the office in January.
It’s another managers meeting at Cascadia, and the acronyms fly. They talk of floating FTEs, budget cycles, staff reductions, the everyday chaos that follows fickle government funding. Cascadia manages more than 1,300 employees in four counties.
Diamata mostly observes, but chimes in when someone mentions that half of Cascadia’s walk-in patients don’t return after their first interview. “Why is it they don’t come back?” she asks.
Her question sparks an unscheduled 10-minute discussion, with answers ranging from cramped waiting areas to lost funding for long-term individual therapy.
The exchange illustrates the importance of Diamata being in the room, Potter says later.
“Donita keeps our feet to the fire,” says Potter, Cascadia’s vice president of clinical services. “If we have three options in front of us, and one is going to do less harm to clients than the other two, that’s where she becomes invaluable.”
The Americans with Disabilities Act mandates reasonable accommodations at work for people with mental illnesses. At Cascadia, that includes hiring flexible shift workers who step in when colleagues need time off for health reasons. Potter allows Diamata to work flexible hours at home to better manage her illnesses.
“The reality is the job still has to get done,” Potter says. That’s gotten tougher in the past decade as the trend has moved away from make-work jobs for people with mental illnesses, things like stuffing plastic eggs for gumball machines, to more meaningful work.
But the switch isn’t easy, even within the mental health field. Diamata forfeited leadership of the Renaissance drop-in center because of her long absence in 2003. Big hospital bills and the loss of pay forced her to sell her house. She’s working to regain the same level of trust with her colleagues and responsibility she had before her episodes resurfaced.
She knows a lot rides on getting through this year’s stormy weather without missing too much work.
Her strategy includes eating better, being more honest with family and friends about her moods, and closely monitoring her thoughts before they spiral out of control. She’s off medication again but has a nurse practitioner lined up if the early warning signs return.
Asked whether she regrets her mental illnesses, Diamata is quiet for a moment.
Relationships have ended because she’s hard to live with, she says. She’s unpredictable, at times unreliable. Her life can be chaotic.
But her relationships have become more stable as she’s grown older. Her mania has contributed to her productivity. And some of her most powerful art and writing has emerged when she was struggling most with depression.
“People always use the word ‘suffering’ for mental illness,” Diamata says. “Suffering can be there. But even at the times you’re having symptoms, it’s not all about that.”