Schizophrenia Oral History Project collects voices

The New York Times, May 8, 2014

The psychologist Lynda Crane found that of the many injuries inflicted by schizophrenia, the greatest could be the pain of being forgotten. Just naming the illness somehow erased the person, something she learned when her 18-year-old son’s doctors said he had schizophrenia. Six years later, he committed suicide.

“It took me a long time to come to terms with it,” Dr. Crane says. “Even I had a hard time understanding it, how this bright man, with a brilliant future, could suffer like this. One thing I learned was that as soon as you mentioned the word, people stopped seeing the person. They just saw the diagnosis and a collection of symptoms. Doug, my son, was forgotten.”

For years Dr. Crane, a professor at the College of Mount St. Joseph in the western hills of Cincinnati, sought a way to enlighten her students and others about the ordinary people who live with schizophrenia despite its extraordinary burdens – the confused thinking, the delusions, the hallucinations, the anxiety and fear. Then she discovered a tool more commonly used among sociologists and anthropologists: oral history. Employing the device to examine schizophrenia has shifted her own perspective about a disease she thought she knew well.

LISTENShirley Austin

LISTENAlice Fischer

LISTENAmber

“People with schizophrenia do not lose their individuality, even when the illness is very severe,” Dr. Crane says. “What I discovered through oral history is that it’s not about schizophrenia. It’s about a complexity of life that is very hard to get at any other way.”

For the past three years, on their own time and with no outside money, Dr. Crane and a fellow Mount St. Joseph psychologist, Tracy McDonough, have built the Schizophrenia Oral History Project. Other oral history collections have focused on diseases like AIDS or leprosy, but this is the first to focus on schizophrenia, they say.

So far they have recruited two dozen people to sit down with them and a voice recorder, asking their “narrators” simply: What’s it like to be you?

“The real beauty of this project,” says Dr. McDonough, “comes out of the fact that Lynda and I really try not to ask a lot of questions. The narrators want to tell their stories. They have something to say. Many of them have told us that no one has ever asked them about their lives before.”

The psychologists began the project by alerting local mental-health organizations that they were looking for participants willing to volunteer directly. “We didn’t want the providers to make the call because that can create a sense of, ‘I have to do this because my therapist wants me to,’” Dr. Crane says. “So each of the narrators had to take the initiative.”

One participant, Shirley Austin, 47, lives by herself on the west side of Cincinnati with her terrier, Fluffy. After a nightmarish childhood of violence and sexual abuse, Ms. Austin learned as a teenager that she had schizophrenia, and she says that even though she takes her medication, has relatives nearby and attends a church, she wrestles with loneliness. When her therapist told her about the oral history project, she was curious.

“Not even my therapists have ever asked me about my life that much,” Ms. Austin says. “I felt like I got strength and courage talking about what happened to me. I want to tell all the teenaged girls to be strong, that I’m a survivor, and they can be, too.”

Dr. Crane and Dr. McDonough have delivered more than 30 talks about the project in the Cincinnati area, visiting schools and local groups and collecting responses.

“I like to think of myself as open-minded, but the Schizophrenia Oral History Project helped me see that I was stigmatizing patients,” said Vicki Cheng, a nursing student at Miami University who heard one of the talks. “I would not have been surprised to learn that a patient with cancer or heart disease loved organic gardening or painting. Why in the world should I be surprised that someone with schizophrenia has hobbies, too?”

The project has benefited participants, too, like Alice Fischer, 43, who has schizoaffective disorder, a variant of schizophrenia, and lives with her mother and brother in her childhood home in Cincinnati’s Price Hill neighborhood. Ms. Fischer said she had been teased since grade school well into adulthood. “Even right now, sometimes on the bus, people say mean things to me,” she said.

She jumped at the chance to join the oral history project as one of its first narrators because she says newspapers and television too often communicate the wrong idea about people with mental illness. Ms. Fischer also prodded her brother, who has schizophrenia, to participate in the oral history project, but he resisted, fearful of repercussions from going public with his illness.

The project’s website features Ms. Fischer’s vivid paintings of owls or hearts or handprints with upbeat messages for world peace. “I want people to know I’m not dangerous,” she says. “They don’t know what a nice person I am.”

One of the narrators most gravely affected by schizophrenia is Paul Drake, 49, who for 14 years has lived with a tabby cat named Tiger in a small cluttered apartment on Cincinnati’s west side. Through his reading, he learned organic gardening to supplement his meager food budget. He starts tomatoes and other vegetables on his windowsill and grows them on a small plot behind his building. He has taught his neighbors how to garden.

Dr. Crane and Dr. McDonough have shared with the narrators some of the written responses they’ve received from listeners to the oral history project; one comment for Mr. Drake said, “I respect Paul’s insights and appreciate his straightforward sharing of how he copes.”

Mr. Drake says the positive reactions “make me feel good.” Amid the disorder of his mind, he frames a sentence to describe the impact that his participation has had on him.

“It gives me,” he says, “some immortality.”

Dr. Crane is retiring from teaching this spring and turning over leadership of the Schizophrenia Oral History Project to Dr. McDonough, who has been applying for grants to support the work and searching for more narrators.

A few weeks ago, they got a call from Alice Fischer’s brother. He said he was ready now to tell his story.

Posted in Uncategorized | Tagged , , | Leave a comment

New risk assessments aim to reduce prison population, increase treatment and other services

The Oregonian, May 6, 2014

County courthousePeople charged with certain felonies and facing prison time in Multnomah County will soon undergo a new risk assessment before they’re sentenced to see if they would do better on intense probation rather than serving time behind bars.

The new program, scheduled to start July 1, is the county’s answer to House Bill 3194, a legislative initiative aimed at keeping people out of prison or sending them to prison for less time to free up money for treatment and other community-based services. If successful, the county could reap a multimillion grant in the 2015-17 biennium under the state’s Justice Reinvestment Program. Some have estimated the windfall could be up to $12 million.

The risk assessments would be done on people who are in jail after their arraignments and as they await trial. The evaluations, recognized nationally as the Level of Service Case Management Inventory, would consider an accused’s criminal history, education, employment, family, any alcohol or drug problems or mental health needs…

Continue reading at OregonLive.com

Posted in Uncategorized | Leave a comment

Advocates to rally for children’s mental health

Statesman Journal, May 8, 2014

Children runningOne out of eight children in Oregon experience significant mental or behavioral health challenges.

It’s more common than childhood asthma, yet the families who face it rarely talk about the devastating impact it can have.

But for one day these families and youth share their stories at Children’s Mental Health Awareness Day. Hundreds of families, youth and mental health advocates will gather at the Oregon State Capitol 10 a.m. to 2 p.m. today to raise awareness.

This year families also have something to celebrate. The Oregon State Legislature increased financial support to public mental and behavioral health programs for youth and their families across the state.

More children, youth, young adults and their families will have the ability to access services that are individualized and strengths and community based, said Sandy Bumpus, executive director of the Oregon Family Support Network.

Along that theme, this year’s event focuses on promoting overall wellness.

“So much of the time we focus on the ‘mental illness’, rather than ‘mental health and well-being.” Bumpus said.

“Building circles of wellness is about celebrating differences, focusing on strengths, and having the support of those who ‘believe in you’. That’s where the healing begins.”

The Oregon Family Support Network, Youth M.O.V.E Oregon, Oregon Health Authority and Addictions and Mental Health Division sponsor the event. Community Partners include Latino Network, Native American Rehabilitation Association, TransActive and Multnomah County.

Children’s Mental Health Awareness Day

Hundreds of families, youth and mental health advocates will gather at the Oregon State Capitol, 900 Court St NE, 10 a.m. to 2 p.m. today to raise awareness around the needs of children, youth and young adults who experience mental health challenges and their families. The event includes speakers, a resource fair, children’s activities and free lunch for children, youth and families.

Where to find help

NAMI Marion Polk is a nonprofit that helps those with significant mental illnesses and their family through family training, support groups and resource referral at namimp@comcast.net

Marion County Children’s Behavioral Health Services works with children experiencing a serious mental illness and their families at (503) 588-5352.

EASA Marion County is a free program that helps young people experiencing their first episode of psychosis. Call (503) 576-4690 or (503) 559-9631 or visit http://www.easacommunity.org​

Posted in Uncategorized | Tagged | Leave a comment

Medford police learn to respond to mental health crisis

KTVL, May 6, 2014

Medford Police Corporal Josh Schilder

Medford Police Corporal Josh Schilder

Corporal Josh Schilder has been with the Medford Police Department for nine years. The most common calls he and his team get involve a person in mental health crisis.

“There’s a lot of people that mental health disorder that live normal day to day lives,” says Schilder.

Just last month, Medford police were called out to Poplar Drive. Witnesses say Bryan Hazelwonder was walking in the middle of the street, waving glass bottles in the air.

Schilder says, “He’s semi-cooperative. He won’t give us his name. He’s acting extremely bizarre.”

Hazelwonder was arrested and charged with disorderly conduct and interfering with police. Due to privacy laws, officers can not say if he was examined for  mental health  disorders, but Patrol Lieutenant Curtis Whipple says these type of cases have become all too familiar in Jackson County.

“In the last three years we’ve seen a dramatic increase in our calls for service for mental health issues,” says Whipple.

According to Whipple, mental health related calls within Jackson County increased by 26 percent between 2012 and 2013.  Over the last year, those same calls have gone up by 31 percent.  As a result, officers are required to go through crisis intervention training, also known as CIT.

Whipple says this training is important because “You’re dealing the safety of the officer themselves. You’re dealing with the safety of the mental health person; You’re dealing with the safety of the families: and it’s important to try to resolve these situations the best we can.”

Over two days, several times a year, Medford police officers talk to professionals from Jackson County Mental Health and the private sector. They learn skills in Mental Health, disabilities, and psychosis.Officers also speak to veterans with post-traumatic stress disorder. They also speak with people they have arrested in the past that have been admitted to a mental health facility.

“You’re talking to them about their disorder, about what it’s like, about how officers could better interact with them when their having a crisis,” explains Whipple.

On the last day of training, police officers wear head phones with a so called “voice  tape.” For hours they hear what someone with schizophrenia hears every single day.

But Whipple points out, “At the end of the class it’s kind of like, yeah this is great, after three hours you can take your head phones off.  Imagine if you had them on 24 hours a day, seven days a week, and couldn’t take them off.”

Schilder says this training allows officers to see the whole picture, to hear what it’s like for someone with mental health issues.  He adds that in the end its about communication and trust.

“People who do have mental health issues, they’re perceived as being different. So even they fear how they’re going to be perceived, sometimes when even talking to us,” says Schilder.

Officers point out that people with mental health disorders live a daily routine. When the police are called, that’s when you know something is wrong.

Whipple stresses, “When family members call the police about another family who’s in a mental health crisis, that’s a real crisis because they deal with them, 365 days a year, 24 hours a day, they deal with this individual.”

Schilder adds to that saying,  “It could be different things. You could have a person who’s mentally ill, who maybe hasn’t [eaten] in four or five days, and is not going to eat for some reason, because of their mental illness. Is that person a threat to themselves? Yes.”

Schilder and Whipple remind everyone, these individuals aren’t bad people,  they are in need of help.

“I mean they may be in crisis. They may just be in survivor mode and just going,” says Schilder.

Since the crisis intervention training was created in 2012, Whipple says the Medford Police Department has significantly seen a drop in repeat mental health crisis calls.

Between January and March of this year, MPD had 194 written mental health cases.  Twenty-seven of those cases were second-time calls, and three were third-time calls.

Posted in Uncategorized | Tagged , | Leave a comment