Talking with Robert Scott Wall

Robert Scott Wall has gone from homelessness to lobbying for and helping to create an overhaul of Hawaii’s mental health services. We spoke when he was deep into a crucial legislative session, so expect some bursts of bureaucratic language ahead.

Here, he tells how his climb from a homeless shelter began with a friendly kidnapping by a psychiatrist, a stranger, who saw something special in him. “Get your stuff and come with me,” the doctor said. Still, it took more than four years, and a nasty bout of vertigo, to shake Robert into changing his life.

He knows that not everyone will be able to do the same. “I’m fighting for those people in shelters that will never get to live their dreams because they’re lost,” he says. “No one speaks for them.”

To me, my suicide attempts were ancillary to coping with the bipolar disorder. Also, one of the reasons I went out and became a public spokesman was mainly relevant to the homeless. I had blown up my whole world three different times, two of them real good. I broke my back in the first one and ended up in a coma three days the third time. None of them was because I wanted to die. It was because I wanted the pain to end. And I couldn’t think of any other way to stop the pain of depression.

I came from a family of bipolars. At one time, we had five living generations, so it wasn’t a surprise. We didn’t know what was going on, but we knew something was going on and could recognize it when it manifested itself. I was diagnosed when I was 12, and they started me on meds when I was 19. My first attempt was on my 22nd birthday, when I broke my back. However, I have been successful. I have 12 years’ worth of college. I worked 30 years as a professional union stagehand in theatre, but three different times because of manic episodes I literally destroyed my world. I ended up homeless in Honolulu and was put in a shelter. At that time, they had me on 11 different meds, including a gram and a half of Seroquel a day. I was a vegetable. I was there a year and a half, but I knew I was going to get out. There are advantages to a superior classical liberal arts education that can’t be denied.

While I was in the shelter, I realized that three-quarters of the people there were completely lost souls and couldn’t find their way out, wouldn’t have options, wouldn’t know how to exercise them, wouldn’t know how to get a meeting or what to say if they got a meeting. I ended up working with a SAMHSA grant the state department of health got, the Mental Health Transformation State Incentive Grant, and they had a speakers’ bureau they wanted to teach. Also, I got to live my dream, and I was never going to get to do it again. I was blackballed out of the theater. The reason stigma doesn’t bother me is because of that. I got to do my dream. So I’m fighting for those people in shelters that will never get to live their dreams because they’re lost. No one speaks for them.

I’ve spent the last five years working with the legislature. In 2010, I got selected as one of 14 co-authors to write a white paper on the Affordable Care Act and its impact on the employment of persons with disabilities. It was used as a reference for Congress, and I kind of made a Faustian bargain: I will absorb as much of this as you can put in me, and in exchange, I will spend the next four years educating my state legislature on the ACA. I’ve actually read the entire law and the supplemental rules and regulations.

You read the entire ACA?

I had to. It’s 1,700 pages, with 700 more pages of rules and regulations. It’s like reading “War and Peace” twice. Except in really, really, really bad bureaucratese instead of excellent prose.

Since then, I have been working developing peer-to-peer programs in Hawaii. We are creating a six-faceted, peer-to-peer program wrapped around and including Hawaii’s tremendous homeless problem, around the lack of affordable housing. The effort has become kind of a success. The governor included $2 million in the executive budget for it, and it will leverage $18 million in federal money for salaries for the peers.

I’m completely immersed in this. This is the crucial legislative session. The ACA started in January, and we are doing this so we can get the peers out there working to get the homeless off the streets and hook them into our health exchange, which we call the Hawaii Health Connector. It will include a forensic certified peer specialist program, our Housing First program for the most vulnerable of our homeless population, something called “grand aides.” It’s where you take _ in Hawaii, you would call it an “auntie” _ that lives in one of the Hawaii Public Housing Authority projects, someone everyone respects. There’s a triage program with a list of 30 questions, connected by videoconference with a federally qualified health center, and it reduces emergency department visits by 70 percent and same-day urgent care visits by 50 percent. We’ve got a section called community health workers. Then there is an entire section based around the generic patient navigators. This is paraprofessional medical workforce development. It will take people who’ve gone far enough into recovery where they can contemplate something like an actual career and transition them back into the workforce at whatever level they’re capable of. All these programs fall under the patient navigator provision of the Health Homes section of the Patient Centered Medical Homes.

The target population in Hawaii is Medicaid patients with two or more chronic medical conditions. In Hawaii, Medicaid is the single largest line item on the budget. Ninety percent of the Medicaid dollars are spent by 14 percent of the Medicaid population, and two-thirds of that 14 percent are behavioral health patients. The government is willing to double down to get them to whatever level they are capable of so they can drastically reduce Medicaid expenditures. Then the state can take that money and invest in affordable low-income housing.That can be used to help house the non- Medicaid homeless, as well as invest in affordable workforce housing.

It’s cheaper to treat us than street us.

Did you come up with that?

The line? Yeah, and the people from Housing First have been here for the last week, and they’re the ones who invented it in New York. We want to couple that with a franchise of Howie the Harp in New York that focused on wrap-around services for the mentally ill. Too many of us die, you know. The greatest medical disparity in America is the fact that the seriously mentally ill die 25 years before the average median age for the general population. If you look at someone like me, it would just be the waste of potential for me to die at 55. The suicide attempts were absolutely real. Certainly breaking your back qualifies. Ending up in a coma qualifies. The others were serious but ineffectual.

That’s what I’m working on, to show that these are lives that don’t need to be lost. There’s a complete shortage of care for the mentally ill. Most of the problem, I think, is we don’t have a lobby. We’re not cute, we’re not “Jerry’s kids,” we’re not puppies. We are the shopping cart ladies. They just want us to not be there. However when someone capable and articulate can come up before the legislature or Congress and show them this is a waste and prove to them that it can cost up to nine times more to not provide programs than to do it, they start to listen. The programs cost $6,000 to $12,000 a year. Each night in the hospital costs $1,200. A year in prison costs $40,000.

When I talked with the chair of the finance committee, I was blessed with witnessing a light bulb moment. You know, when you can see the light bulb go off above his head? He says, “Oh.” He brings his staff in and says, “Tell them everything you just told me.” That makes it incredibly worthwhile. When all six peer programs are fully ramped up, I think we could get up to 3,600 half-time Ticket to Work jobs for the disabled. This is going to save lives and change lives. The patient navigator provision says we can get a 9-to-1 federal match on the peer salaries, on the condition that they stay for two years with the employer as a navigator. If it’s a success, they transition into entry-level career-ladder jobs, freeing up their slots for a new generation, who they taught.

The thing about peer programs is that the consumers have to fix themselves. The thing they need is is a guide to show them that it’s possible and how the guide did it themselves. That’s what I’m doing.

When will all of this start?

The first of the six programs, the health exchange, that started the first of last October. The Housing First pilot program starts the first of April. We’re still writing for the other four arms of it. But the Center for Medicare and Medicaid Studies is going to get 53 Health Homes proposals from the states and territories, and they said they’re accepting everything and freezing them for three years while they study them, and then they will promulgate the best ideas. The Housing First is for life. As long as there are no lease violations, they will stay in the apartment. Even if there are lease violations, we’ll find them a different apartment.

That’s my brief speech, because they don’t let me talk much more than that in hearings.

How did you get out of the shelter?

I was rescued by a psychiatrist. The last year I was in the shelter, I was in inpatient six different times. The last time I was in the hospital, a psychiatrist came in the second morning at 6 a.m. He said, “Get your stuff and come with me.” He just walked out of the room. I basically thought I was being thrown out of the hospital. He was in the hall, and he said, “Come along,” and we walked right past the charge nurse, without doing any paperwork. He led me downstairs. He put me in a really nice green Jaguar, and we drove over the mountains into town to this building. Then he looked at me, and he said, “You
live here now.” He runs three different multi-person apartments for his patients that he thinks he can actually help. His name is Dr. Denis Mee-Lee, and he saved my life. He’s an angel. He let me just deal with my issues. I spent four and a half years virtually locked in my room. That’s not true, there were others in the building, but I healed.

Then I got the worst form of vertigo there is, called vestibular neurontis. It’s a virus, and I had to go to the hospital. I had to lie on my left side for 11 days, and I could neither read or watch TV because I would become nauseous. It was the most boring time I have ever experienced. Somewhere in there, I had an epiphany. I could no longer do nothing.

I had not had case management, and the only reason I still have it at all is if I go into crisis. I go into crisis about once every two years. I asked the state if I could borrow a case manager. They gave me their most senior one, about to retire. We had two hour-and-a-half-long lunches. He referred me to the local NAMI executive director, and I worked as her executive assistant for six months. She taught me how the legislature works. I transferred to United Self-help Hawaii’’s consumer-run organization, and I worked as executive assistant for the executive director there. He said that my job was to create a sustainable state-wide consumer network and to coordinate annual consumer conferences. Since I was from the theater, I could do it in my sleep. I did my first conference, and that’s where I met the people from the SAMHSA Mental Health Transformation State Incentive Grant.

But the executive director is too crazy for me, and I ended up helping to organize the second consumer organization in Hawaii, the Community Alliance for Mental Health. I’m the vice president and legislative advocate. We have a woman who actually works for an insurance company that has the community service contract. She’s also a consumer. I asked her if she would be the president, because her feet are more on the ground and she could keep an eye on me. We’ve been on our own feet for a year and a half.

The story you told about being rescued is striking. The apartment you stayed in, was it free for patients?

No, he charges rent. I was paying $350 rent. In Honolulu, a studio is $1,200. He was taking losses for his patients. It’s a question of him picking people he thinks he can actually save. He’s been my doctor for 14 years. He’s an angel. There are only four doctors on Oahu who are still taking Medicaid patients. One of the hardest things to do now is find doctors who take Medicaid patients. There’s an absolute shortage of specialists, and a lot of them are choosing not to. I can’t say too much about Dr. Mee-Lee. He’s a member of the Seventh-day Adventists. He doesn’t force people to remain clean and sober, but he stresses it. He tries to change your entire lifestyle. I haven’t gone that far for basically theological differences, but he takes a holistic approach to healing.

Did you ever ask him what he saw in you?

He is my psychiatrist, and I keep him abreast of all I’ve been doing, including being sent to Washington. He believed in me when nobody else did. It took four years to sell this patient navigator program to the legislature. The senator with the human services committee, she saw it, and virtually anything with these programs has to go through human services, and she has been my ally. Then I convinced the governor’s homeless coordinator, who started to talk to me because he was in the same hearings I testified in. Then the head of Hawaii Public Housing Authority started to talk to me. Slowly, one by one, I turned people around to it. The chair of the senate health committee believes in me but doesn’t think I’ll get 10 percent of what we’re shooting for. Whereas the head of human services believes you don’t get anything you don’t fight for.

You mentioned that you still have crises. How do you prepare for it?

I’m completely open. I made myself a public figure. I talk to the press. I’ve been on the front page of the paper a number of times. I’ve been completely open on the legislature, which broadcasts on community service TV. This all has to do with, somewhere when I was having the epiphany in the hospital, I realized that my life as far as what I wanted to do was over. I got to make movies. I got to work the Olympics. I got paid to do the World Series. When I was 30, I was making two grand a week. I’m never going to do that again.

The only possibility was to have a career in academia, where crazy is acceptable, or working with the government, who already knew who I was. So I’m public. I’m 57, and I’ve had 28 inpatients. Two-to-one have been mania over depression. Depression can last, god help me, months. But the mania, I’ve learned the symptoms, I’ve survived. And the doctor believes in me, the hospital believes in me. And we have a rule: If I go three nights of five hours or less sleep, I report into the doctor’s office. If I go three nights with three hours of sleep or less, I go to the hospital and basically self-admit. And so it’s a living process.

What are some of the striking responses you get from people out there, beyond your support network?

Well, my mother’s an English professor, and I was raised in the classics. I believe in hubris. I don’t believe in destiny or preordination, but I look at them, and it’s really hard for people to argue with the success I’m getting, so I really don’t care. I’m out there, and it’s working, and the government is supporting me. These are smart people, the elected representatives of the population.

The public has to understand, again, that it’s cheaper to treat us than to leave us on the street. We’re a protected class. They have to pay for us, whether through the criminal justice system or the emergency room. They’re going to pay for us, so it’s better to do it efficiently. They also have to see that.

There’s a concept in Hawaii I’ve never seen anyplace else. It’s called Ohana. It’s not just the people who love you, but the people who love the people who love you. If my best friend’s sister is in the hospital in South Carolina, even if I don’t know her, she affects me because she affects my best friend. We also have the concept of hanai family, the ones who are not your blood but still your family. Under the concept of Ohana, one of every eight families is impacted by mental health. We’re all trapped on this island, and Ohana thinks of the island as a canoe. This goes back to the Polynesian expansion. We have no place to go. We’re here and surrounded by sharks. We have to take care of each other, because there’s no one else to do it. You take care of your Ohana, because that’s what people do.

What does your family think, if they’re still around?

My family is on the mainland. My mother is one of the five generations of bipolars I spoke of. I was diagnosed because her first inpatient stay was when I was 12, and she and my father got divorced because he couldn’t keep his zipper up. Part of her process was, her doctor wanted to do family therapy. He kept looking at me, and at the end of the second family therapy session, he looked at me and said, “And you’re one, too.”

And she supports it. My father’s dead. My sister is also a fellow traveler. She has four children, and one of her children for sure is, and another one maybe is, too. My maternal grandmother was unipolar depressive, and god help me, I would shoot myself if I was that.

The only bad in the family does not have to do with mental illness; it has to do with politics. Originally, we’re from Texas. We moved to Berkeley in the mid-60s so my father could go to seminary. I ended up being a junior high and high school kid in Berkeley in the midst of the revolution. We were under martial law for three years. I grew up in the riots. The only difference with the rest of the family is all political and theological. My family is my mother and my sister and a couple of residual best friends from growing up.

Did they know you had ended up in a shelter?

As I said, I blew up my world three different times. For my mother and sister, it was the point where you can’t fix people, they have to fix themselves, and a consumer can’t do it until they are ready. I had gotten to the point where I was destructive to my family unit. So I ended up on my own.

I had gotten my disability settlement. It took three years to get my Social Security disability. They had given me 24 grand in cash. I was old enough to realize the potential for danger, and I wanted to be healthy after the leaving the theater. I was going to go back to school. I knew if I kept that money, it would be gone. So I had $24,000, and my mom had perfect credit, and we bought a house together so the money would not be wasted. I went back to school, and I was three classes short of my master’s in history when I had the third suicide attempt and ended up in a coma. That did possibly more damage to my mother than to me. We had to separate. So we sold the house, and I wound up in Waikiki in 1999 with about $25,000, and I went through that in six months.

I had no place, no grounding, and again it was a continuation of the third destruction. I was completely mad by the time I ended up broke. The hospital placed me in the shelter after I was no longer in need of acute care. They had me so medicated I was sleeping 12 hours, non-functional six hours and barely coherent six hours a day. But again, I knew inside me that I was going to get through it, and once again, there’s nothing like a classical liberal arts education. I didn’t know what to do with myself, but knew I wasn’t done.

And they’re unbelievably proud that it actually is working. It’s really nice. The government will let me stop off on the way home on the way back from Washington, so I can stop in California on my way back and visit. Also, since I have to have unlimited long distance to talk to the East Coast, sometimes we just visit over crazy news items. Recently, I talked with my mother on the phone a lot about Chris Christie. It tickles me to death watching the Republican Party self-destruct.

What else would you like to do?

Again, I believe in hubris, and I’m afraid I’m going to wake up and see it was a dream. It has to go through. The governor’s homeless coordinator wants me to be the coordinator for the six peer programs. That’s an honor, and I certainly can use some money, but I don’t want to use the last years of my working life as a bureaucrat, so I have to see what it entails. They’re giving it to me because it is my vision and my dream, and I want to see it on its feet.

I’ve been healthy and grounded a number of years now, and I have been very lacking in joy. I want some joy. So, between making the vision come to fruition and balancing that up with bringing some joy back into my life. I have an idea. There’s a glimmer out there. I might have met someone. But that’s brand-new, and I don’t know. Balancing bringing to fruition and bringing happiness to myself is what I want and what I need.

Your work is far broader than suicide attempt survivors, but what, if anything, would you like to see changed on that issue?

I would like to see mental health treated with true parity and regarded as an illness and not as an aberration. I don’t think anybody can think any patient, anybody suffering from it, is doing anything wrong. It’s an individual road for each person. But yes, the topic needs to spread.

I have to remember, and the public has to understand, that stigma is still real. It’s going to affect you if you come out. It’s not like coming out of the closet as gay. Being gay doesn’t mean you can’t do your job. No corporation is going to hire someone acknowledged as mentally ill. They will believe that you’ll miss work deadlines. They’re not going to trust us. As I said, the only place I thought I could work is academia or government. Lawyers aren’t going to come out. Physicians, certainly, will not. Most elementary and high school teachers would not be able to. Reporters, well, Hunter S. Thomson got away with it. I can’t judge, but I don’t think there’s going to be many people that are in the emotional position where they’re going to be able to. I wouldn’t have done it except for the fact that I got to do my dream. That, and the fact that I got to sit in the shelter and live with people who would never find a way out. I’m doing it for them. Somebody has to.

How will they get out?

Everybody isn’t going to get, quote-unquote, “well.” But our goal is to have everyone achieve the optimum life they’re capable of. Some will never get out. Some, perhaps, will only make it to independent living. Some will never get past going to their clubhouses. Some will get jobs, maybe full-time, maybe not. Some might be able to go back to school and do even better. You play the hand you’re dealt. We just want them to get a fair seat at the table.

Who else are you?

I’m a stagehand. I’m a historian. I grew up on a working ranch, so the little boy in me is a cowboy. I consider myself a rational anarchist and some level of a socialist. I was raised in Berkeley. I’m a hippie, a well-educated hippie. I say I have Texas values and hippie ethics. Sometimes I say it’s the other way around.

Anything else you’d like to add?

I’m glad I’m not dead. I still can envision it, unfortunately, happening again. I made a pledge I’d never do it until my mother was dead. I’m not going to have children, I decided a long time ago. I wouldn’t want to pass the depression on to anyone, and I think that’s tragic, and I hope the NIH and NIMH will be able to someday find a way to actually do gene therapy and get this out of us. Some days, the black funk comes over you, and it’s terrifying. But I’m not a clinician, I don’t have a master’s in public health, I don’t know how to do anything about it. All I have is the power of persuasion, and I’m trying to do the best I can with that.

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