Not Broken is an original one-hour documentary from Arizona Public Media that presents a candid, unflinching, yet hopeful portrait of youth living with mental health challenges. The participants featured in the film represent a range of different backgrounds and experiences. Some are youth of color, some identify as LGBTQ, some have survived sexual abuse, poverty, bullying – but despite the obstacles they’ve faced, all are fighting to live their dreams.
HELPING PEOPLE IN NEED – ONE LIFE AT A TIME
One day many years ago a volunteer at Interfaith Community Services told CEO Bonnie Kampa that she needed to meet Lura Lovell.
Connections were made and the volunteer and Bonnie were soon chatting with Lu in her living room. It was just before Christmas and Lu immediately made a family holiday donation to ICS. It was the start of a long and happy relationship.
“Lu loved us and we loved Lu,” recalled one staff member recently.
That’s how this grassroots agency grows – one supporter at a time.
Interfaith Community Services is a nonprofit organization in Tucson with a staff of 28. That staff is there to support a powerhouse of more than 700 trained volunteers who serve people in need throughout the metro region of nearly 1 million. The volunteers represent nearly 80 different faith communities, as well as the community at large.
You’ll find them visiting the elderly or disabled, making home repairs, delivering meals, driving people to medical appointments, shopping for them, preparing tax returns, picking up donations for the food bank or helping jobseekers use the computer to prepare resumes and submit applications online.
ICS volunteers and staff are committed to doing whatever they can to help people get back on track – one life at a time.
A Culture of Compassion
Walk into the modest office in northwest Tucson and you will immediately feel the warmth and compassion. The caring is palpable.
“Our one and only mission is to provide services to people in need,” Bonnie said.
“What touches me all the time is people walk in these doors and they feel the compassion,” Bonnie said. “We come together to help people in need. At the end of the day, lives are being changed and improved.”
Social Services Director Terri Patt-Smith has been with ICS more than 20 years. She fondly recalls the little things that make a big difference – like fixing a bicycle so a man can get to his graveyard shift when the buses don’t run… providing violin lessons for a child who then earns first chair in his high school orchestra… or taking a woman in her 90s to visit her ailing 77-year-old son.
ICS also provides stop-gap funding for life crises – like pending eviction, utilities about to be shut off, a bus ticket to return home, medicine for a sick child, or dental care for a woman who wanted to fix her bad teeth so she’d have a nice smile and better chance of landing a job.
Lu liked this grassroots nonprofit and became passionately involved. She “breathed life” into meetings, one staff member recalled. Bonnie and Lu put their heads together to figure out how ICS could fit into the priorities of the Lovell Foundation
Helping Faith Communities Focus on Health
In 2008 Lovell Foundation began providing support for ICS Health and Wholeness Program which focuses not just on spiritual health but mental and physical health as well. The program helps faith community leaders integrate health-related activities into their congregations – because that’s where people in need frequently turn for help. Activities can range from onsite blood pressure checks to health fairs, support groups and training to address sensitive subjects like mental illness and end-of-life matters.
In 2011 Lu herself generously provided the final funding for the capital campaign to expand the onsite ICS food bank from 400 square feet to 2700 square feet.
In 2012 and 2014 the Lovell Foundation also sponsored the landmark Faith and Mental Illness Conferences presented by ICS, followed by well-attended regular lunch-and-learn forums on specific mental health issues.
The staff at ICS conducts in-home health advocacy evaluations for seniors and people with disabilities to identify those who are most at risk, then surrounds them with added support to keep them healthy at home. That support could be transportation, meals, home repairs, grocery shopping or home visits and check-in phone calls.
“We connect the dots for people and let them know about programs that will help them to be safe and independent.”
According to Bonnie, surveys show that after contacting ICS, 80 percent of households are able to meet immediate needs, access resources and develop a stabilization plan.
A Consistently Caring Presence
“Our volunteers are the eyes and ears of ICS. Our staff is here to support them,” Bonnie said. The volunteers have the ongoing personal contact and are trained to spot and report danger signs that may need attention. “A persistently caring presence makes such a difference.”
The corps of volunteers continues to expand. “There is an unrelenting demand for our services,” Bonnie said. By June 2014, ICS touched nearly 37,000 individuals with services, a 9 percent increase from the previous year.
There are volunteers who are regulars, coming every week to welcome visitors, work in the food bank or drive clients to appointments. There also are those “super” volunteers who come into the office for a half day several times a week. And there are those who once needed assistance from ICS, got back on their feet and began volunteering to help others.
“An older woman came to ICS because she was getting on her son’s nerves. He told her ‘we’ll find someone who will visit you – a companion,’” Bonnie said. “Before long she signed up to be the volunteer providing companionship to someone else.” Another volunteer was referred by her pastor. Recently widowed and depressed, she needed to find something to do.
“Those are the stories as valuable and important as any of the programs we provide. Those volunteers found a connection and a reason to keep going. We have so many stories like that.”
Umbrella of Services for Life’s Storms
Deborah Carr, ICS development director, said, “We are providing a place for people to do something extraordinary. No matter where you are in life, when you come to ICS you feel a sense of hope – that somehow a solution is at hand.”
Being part of this organization “reaffirmed my faith in humanity,” she said. “This is a place where people have passion for what they are doing – and are passionate for each other.”
In 1985 six congregations in northwest Tucson collaborated to establish the Northwest Interfaith Center. Bonnie joined the staff in 2002 when longtime co-founder, June Head retired at the age of 77. The name was changed to Interfaith Community Services in 2005.
When Bonnie took the reins the ICS budget was about $300,000. Today it tops $4 million.
ICS Board President Steve Pollyea said Bonnie Kampa is a visionary leader. “One of her greatest strengths has been to bring people from diverse background and beliefs together to join ICS in a common goal of serving those most vulnerable. Her ability to leverage efforts and resources helped keep ICS financially and organizationally strong and flourishing in a fluctuating economy.
“She has developed significant new programs, led the agency through three capital campaigns and established an endowment fund of nearly $5 million.” Under her leadership, ICS also has received the coveted four-star rating for the past five years from Charity Navigator – America’s leading independent charity evaluator.
Next up Bonnie and her team are initiating a model program that would connect hospitals with faith community leaders and volunteers so they can follow their members after they are discharged.
“We could work together to surround at-risk people with services that can keep them from ending up back in the hospital. A lot of recidivism is because people aren’t following through with basic care. Maybe they need mobile meals, a friendly visitor, transportation. What we’re looking at now is a model that really could have impact – to help people be healthier and reduce the return to hospitals and the cost of care,” she said.
In January 2015, the Lovell Foundation approved a three-year grant of $560,000 for ICS to develop the Faith and Community Health Network to bring together the rich resources of faith communities with the needs of the most vulnerable populations in healthcare –by serving as the bridge between the hospital and volunteers who will provide vital non-medical support, aftercare and transition services following discharge.
After 13 years at ICS, Bonnie retired in February of 2015. Board President Pollyea said, “Bonnie has achieved so much during her tenure. She leaves us a much bigger and better organization, in great health and with a busy agenda for the future.”
In February 2015, Daniel Stoltzfus took over the helm at ICS. “I am humbled to lead Interfaith Community Services (ICS) in this season of community outreach growth with the support of hundreds of dedicated volunteers, nearly 80 diverse faith communities and so many passionate donors. My goal is to build on the outstanding legacy of the leadership of Bonnie Kampa and our board that made these opportunities possible. We recognize that much of our growth and impact comes thanks to the guidance and investment of the Lovell Foundation.”
ROB FACES CHALLENGES, SHARES PASSION FOR AEROSPACE
Rob Lovell was never like other children. He was born in 1957 with organic brain damage.
It would be years before his condition was finally diagnosed as a combination of Asperger’s Syndrome, schizophrenia and epilepsy.
Lura and David Lovell were told this child would never be able to walk, write, speak well or read.
Lura did not accept that fate. She taught Rob to read and write and sought out the best places for him to go where he could thrive. It was an arduous uphill battle. Back then there was little knowledge of mental illness and few resources to support families who were dealing with heartbreaking challenges.
Rob was born in Illinois and lived in New Jersey for nine years before the family moved to Toledo when his father founded the Coulton Chemical Company in 1969. Rob ultimately graduated from high school at age 20 from Mary Immaculate School, run by the Sisters of Notre Dame in Toledo.
Today Rob is 57 and lives on his own in a condominium in Tucson with assistance. He likes Tucson better than Toledo because “you don’t have to worry about the weather changing all the time,” he said.
Rob Volunteers at Pima Air and Space Museum
Since 2006 Rob has volunteered several days a week at the Pima Air and Space Museum, accumulating more than 3,500 hours of service.
By the age of 12 he was avidly reading everything he could find about the space program. He watched every space shuttle launch and has photographs autographed by astronauts he’s met. Rob is also the go-to source for any detail of rock-and-roll music.
Over the years mother and son made their way through a maze of neurology, psychology, psychiatry and special education options. In 1960, Lura joined the Association of Retarded Children and was instrumental in starting a preschool program for mentally disabled children at a local church.
“We knew he had problems right off the bat,” Lura later recalled. “That was difficult because we didn’t know how to help him. There wasn’t much information about kids like Rob so we had to make it up. I had a child development degree and was a stay-at-home mom so that was my job – to do the best I could for him.”
Rob was their third child. Steve and Ann were older and Sara was the youngest.
Lura Leads Way for Families Dealing With Mental Illness
In Toledo Lura became a zealous advocate for those with mental illness and their families. She joined the board of the Zucker Center, an agency serving children with emotional and developmental issues, then the Lucas County Mental Health board. She co-founded the Toledo Alliance for the Mentally Ill, which led to the National Alliance for the Mentally Ill. She supported the Family to Family educational program that became a national model.
“I realized how important it was for families to get information about their family member who was ill – and it wasn’t coming out of the mental health system or out of the psychiatrists,” Lura said.
Rob’s sister Ann recalled, “After high school the family had to find a place for Rob. Those were some of the hardest decisions.” He went to a series of boarding institutions in several states. Some were fine. Others were right out of the Ken Kesey novel “One Flew Over the Cuckoo’s Nest.” Rob once told friends watching the film on television “you’re watching it – I experienced it.”
Rob vividly recalls how he was treated – being dragged downstairs, punished for being over medicated, being left in the “quiet room” for 11 hours and not being allowed to use the bathroom. Sometimes phone calls to his mother were prohibited. Staff members lied to Lura, saying they didn’t know where Rob was. There was swearing, insults and sexual innuendos.
In Florida he was over medicated and put on a bus to Toledo. David met him at the station. Rob got off the bus looking like a zombie. His dad’s eyes welled with tears.
David Develops Model for Supportive Adult Housing
After the challenges of finding suitable living accommodations for Rob, David and Lura decided to find a way to provide supportive housing for other adults with severe mental illness. They were founding board members of a nonprofit in Toledo that became known as Neighborhood Properties. Dave and two other businessmen led the acquisition, rehabilitation and organization of the first 40 units. Ultimately the program expanded to 450 housing units.
The institutional system at the time did not know how to treat people with mental illness.
It wasn’t until 1994 that Asperger’s was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. Though progress has been made, there are still stigmas around mental illness and challenges to receiving treatment.
Rob has worked for grocery stores, a mailing house and a music store. He’s organized libraries for a church and a family member. He’s also had setbacks, including a nervous breakdown in his forties, where he was isolated, didn’t eat and his weight dropped to 116 pounds.
Today Rob’s life is fairly stable. He’s lived in Tucson since 2004 and is passionate about his regular work at the Pima Air and Space Museum. His mind is crammed with details and vivid memories. He clearly adores his family. Reminiscing at his favorite restaurant, his eyes light up and he relaxes. When he’s had enough talk, he stands up and says, “I’m done.”
Rob Speaks Out With Gratitude
Normally reticent, Rob surprised everyone at his mother’s celebration of life events in Tucson and Toledo in the fall of 2013. He spoke before hundreds of people for several minutes, sharing specifics of how much she did for him and how she came to his rescue time and again. He is keenly aware that because of his loving family, their commitment and good fortune, he is well cared for – unlike many other people dealing with mental illness.
Lura and David not only helped make life better for their son, but also implemented change that helped other individuals and families dealing with mental illness. Their zeal is carried forward through mental health grants from the Lovell Foundation over the past 20 years – including more than $1 million to the mental health agencies that Lu helped establish and $118,500 for the housing nonprofit that Dave launched for adults with mental illness.
Millie Smiley was a beautiful blond with penetrating brown eyes. People often said she looked like Grace Kelly.
Yet behind the beauty and the smiling façade was a young woman hiding her increasingly severe mental illness.
She went to college, fell in love and had two adorable baby girls.
But by the time they were 4 and 2, Millie’s life had spiraled out of control. She was divorced, jobless and unstable. There were delusions, screaming and beatings.
“On bad days my mother was violent. On good days she’d sleep all day – though that meant she did not feed us or change my sister’s diapers, so I did it instead,” recalled Susan Smiley, the older daughter who documented Millie’s wrenching journey in the film “Out of the Shadow,” which premiered in 2004 at the Silverdocs Film Festival.
“She was a horrible human being sometimes – and yet she could be so loving,” said Tina, Millie’s younger daughter. Susan added, “It was those loving moments – brief glimpses into that sweet soul that was hidden deep within my mother – that kept us devoted to her, always hoping for more.”
It would be years before Millie was diagnosed with paranoid schizophrenia – and decades before her mental illness was finally stabilized.
After their father gained custody of the girls, Millie lived with the demons of psychosis, isolated, unable to hold a job, going on and off medications, moving from place to place – 17 psych wards, 8 apartments, 3 boarding houses and countless hotels.
“This is a remarkable film about schizophrenia. It is emotionally powerful, showing that recovery is possible – while at the same time exposing flaws in our mental healthcare system. Susan Smiley has produced a memorable, masterful work,” said Mike Fitzpatrick, executive director of the National Alliance on Mental Illness from 2004 through 2013.
Directed and produced by Susan, “Out of the Shadow” was featured in several film festivals and aired more than 1200 times on public broadcasting stations since 2006. The film’s been translated into nine languages and shown internationally.
The David and Lura Lovell Foundation supported this project with grants totaling $291,175. The Lovell’s son Robert also has schizophrenia. They too battled the inadequate mental health system for years.
Millie’s story is far from unique. Some 60 million people in the world suffer from schizophrenia. It strikes people from all walks of life, regardless of nationality, race, creed or class. Half attempt suicide. One in 10 succeeds.
Millie did attempt suicide. “I slit my throat and wrists and there was blood everywhere. The noise pollution was like 10 billion years of hell,” she says in the film.
“Out of the Shadow” documents milestones in Millie’s tumultuous life. She’s now 70.
- Denial. Millie’s father died in World War II. Her mother Catherine was a nurse. Growing up, Millie’s cousin Nancy tried to talk with her. “Every single time I brought up the subject that there was something wrong with Millie, she pooh-poohed the whole thing and said that Millie was just high strung.” Nancy once asked Millie, “When did you feel things were not right?” She answers, “I’ve never been right. Nothing has ever been right for me.”
- Ignorance. “Mildred could keep it together when people visited,” Nancy says, “so outsiders would not have the sense she had anything wrong with her.” There was little awareness of mental illness at the time. People didn’t get involved. “The shame and ignorance causes families, friends and neighbors to turn a blind eye to the destructive behavior, hoping it will magically go away with time,” Susan says. “I swing between a profound sense of betrayal at my family’s inability to help us and empathy for their need to look away.”
- Altered reality. “Anybody who’s dealt with a family member who has schizophrenia knows that it’s not something that just goes away after they start taking medication. Schizophrenia is something you have to deal with till the day you die,” Tina says. Millie hates taking medicine. She does not grasp the cause-and-effect relationship between her state of mind and the medications. “I don’t need nursing. I’m perfectly healthy. I walk everywhere. I don’t drink or smoke or take drugs. I eat properly. You’re better off going to health food stores. An ounce of prevention is worth a pound of cure,” she says in the film.
- Legal barriers. Because of patient confidentially rules, Susan and Tina have trouble keeping track of their mother. Time and time again “we’d find out she’s been evicted the day after – so we don’t know where she is. They won’t tell us where she is because she hasn’t signed the form to release the information. As far as we know she’s out on the street.” Finally they decide to take on the public health system so they can have more knowledge and control over Millie’s care. “We went to court. We sued the state for guardianship of our mother.” It was not a smooth road. At one point, Millie tells them, “You’re not my guardians. You’re hideous nasty meanies.”
- Crisis. Millie visits her aging mother in a nursing home and is agitated by the experience. Her mother dies soon after. “Two months later she was back on the psych ward and refusing all treatment,” Susan recalls. “After a two-week standoff, the doctor says mom is his most defiant patient.” The system still requires Millie’s signature for treatment. “We had to get her to sign a consent form. This was our only hope for getting her back on track.” Over Susan’s objections, Tina convinces Millie to sign the paper by telling her it’s an application for her own apartment. The pivotal lie is worth it to Tina. “She doesn’t realize that in order for her to have the life she wants, she has to be medicated to get her brain straight. It’s better than letting her go homeless and die a horrid death.”
- No continuity. After the crisis Millie is released to a nursing home – the only place in the county system that has a bed for her. “The absentee psychiatrist is clueless about her history – the latest in a long line of nameless, faceless doctors to offer a panacea for her condition,” Susan says. “Everywhere mom lands within the fractured system she gets a new doctor who has a different idea about how to treat her.” With scant records of her medical history, “there’s a tremendous lack of consistency in the medications she receives – which causes a lot of problems.”
- Resilience. At long last Millie applies for and is accepted into a group home that Susan calls “the Holy Grail of placements.” This is a safe, permanent residence from which she cannot be evicted. It is her 47th home in 20 years. Millie comments, “I’m getting kind of old to be so flexible.” At age 60, she settles into a comfortable supervised routine – taking her medications twice a day, riding the bus and working at a restaurant as a dishwasher. She tells Susan, “I love work. I’m anxious to get there in the morning. I’m very enthusiastic about the food – it’s delicious, it’s nourishing, it’s seductive. It’s gourmet fast food. I look forward to weekends – and then I look forward to Monday too.” Millie is enjoying being around “normal” people. She even reconnects with her former husband and celebrates Christmas with their combined families.
After viewing “Out of the Shadow,” the son of a schizophrenic mother wrote to Susan. “I never realized that the fear, frustration, anger and shame that I felt could be so universal. Millie is a perfect subject for a documentary on schizophrenia – a beautiful, intelligent young woman whose life is torn apart by a horrible disease and broken system. If it could happen to an all-American girl like Millie, then by the grace of God it could happen to any one of us.”