Text of ABC-TV Online Story on Mad Pride, Mental Health Rights, and Alternative Mental Health (Part 1 & 2)

Part One of the ABC Report Online:

For the original Part 1 article and photos, and to comment on the Part 1 piece, please click here: http://abcnews.go.com/Health/Primetime/story?id=8382903
 

For Some, Psychiatric Conditions Are 'Mad Gifts' to Be Cherished, Not Medicated

By IA ROBINSON

Aug. 24, 2009

Imagine if Vincent Van Gogh -- an artist who was famously afflicted with mental health issues -- had been forcibly injected with an antipsychotic drug like Thorazine. Or if Leonardo Da Vinci's genius had been affected by antidepressants such as Wellbutrin.

That's what San Francisco-based music artist Madigan Shive wondered.

"I think often that if DaVinci were alive during our time, would we just dope him up? What would we do?" he asked.

It's a question being asked by a growing grass roots movement about 8,000 members strong -- many of whom are rejecting pharmaceutical solutions for psychiatric conditions and fighting the stigmatization and shame of mental illness.

You've heard of Black Pride and Gay Pride. Now make room for Mad Pride.

Watch "Primetime Outsiders" this TUESDAY at 10 pm ET.

Mad pride supporters -- many dealing with serious mental disorders -- are now boldly coming out of the closet. Actor Joe Pantoliano of "The Sopranos" fame views his depression as a gift.

"The best thing that ever happened to me was being diagnosed with a mental disease," Pantoliano told ABC News.

It wasn't until being diagnosed with clinical depression that Pantoliano realized he had spent years self-medicating his anguish.

"All I've ever been looking to do was fill up a hole that was inside of me," he revealed. "It didn't matter what I was filling it up with ... success, women, a beautiful runway model wife ... because that made it go away temporarily."

He credits his mental illness diagnosis as the reason for being a happier and more creative person.

"I embrace who I am. I took my sadness and I turned it into a career," Pantoliano said .

Pantoliano has set out to help others cast off the stigma and shame he said is attached to mental health issues. He created a nonprofit organization, No Kidding, Me Too!, "based on accepting, encouraging people to admit to their disease -- to seek treatment and become even greater members of society."

Enlisting a crew of celebrities -- including Robin Williams, Samuel Jackson, and Robert Downey, Jr. -- Pantoliano's organization assembles industry professionals who support its mission to get out the word about mental illness and treatment.

"We want to make the discussion of mental illness cool and sexy and trendy," he said.

Some See Mental Illness as a Blessing: 'I Need My Madness'
Pantoliano treats his mental illness with medication, but others who are embracing their madness choose not to, just like spunky musician and activist, Madigan Shive. Shive is an active member of The Icarus Project, one of the many Mad Pride organizations that encourage viewing madness as brilliance.

Shive hears voices, she has delusions, but it's her madness that she cherishes. Though she was once diagnosed as bi-polar, Shive is now reluctant to give herself a psychiatric label.

"I knew right away, taking the traditional bio-medical route wasn't what was going to be healthy for me," she said. "I don't take any of the medications that someone, like myself, in a typical scenario would be prescribed. But I know some people who do and use it smashingly well and I support all that."

Shive insisted her madness is part of what makes her distinctively unique, and she believes that psychiatric drugs would only taint her "mad gift."

"I take it very personally," she said. "Please don't change this thing in me that creates this music and keeps me alive. ... I need my madness."

Some worry that refusing meds is a dangerous game for people with mental illness, especially after hearing about cases such as the University of North Carolina law student who, in January 1995, gunned down a popular lacrosse student and a McDonald's manager because he suffered schizophrenic delusions; or the Virginia Tech shooter Seung-hui Cho, who killed 32 people and wounded 25; and, of course, the infamous John Hinckley Jr., who attempted to assassinate President Ronald Reagan in 1981 and was eventually found not guilty by reason of insanity.

In each incident, people believed to suffer from mental illness were believed to be unmedicated and untreated at the time of their crimes.

Mad Pride Activists Say They Are 'Anti-Bullying,' Not Anti-Medication

But David Oaks, a prominent Mad Pride activist and a leader of the advocacy organization MindFreedom International, agreed with others in the Mad Pride movement who feel stereotyping the mentally ill is a serious mistake.

"The vast majority of people with psychiatric diagnoses," Oaks said, "including serious psychiatric diagnoses like schizophrenia and psychosis and bipolar -- we're law-abiding, we're peaceful."

Oaks said MindFreedom International seeks to work for social change in the mental health system. He stresses that Mad Pride is not anti-medication, but rather it is anti-bullying, and he asserts that it should be a patient's choice whether or not to accept medication.

Most of our members have experienced things like forced drugging," Oaks said. "We are people who have experienced human rights abuses in the mental health system."

Oaks' personal experience propelled his involvement in mental health advocacy. Oaks is a Harvard graduate who was diagnosed with schizophrenia and bi-polar disorder in the 1970s, while still a student at the prestigious university.

"I thought the CIA was making my teeth grow, I thought the TV was personally talking just to me, that the radio had the voice of God," Oaks recalled.

Overwhelmed by delusions, Oaks was admitted into a psychiatric institution, where he says he was treated aggressively and forcibly medicated.

"They brought me to a solitary confinement room, and I always remember being pushed down on a bare mattress and having my pants ripped down and getting forced injections more than once," Oaks said.

Today, 33 years later, he proudly calls himself a "psychiatric survivor." Oaks chooses to treat his mental problems with alternatives to medication, such as specialized nutrition, exercise and gardening.

Critics Say Rejecting Medication Is Nothing But Reckless

But critics argue that rejecting one's medication in favor of using alternative treatments alone is nothing but reckless. Art Caplan, a professor of medical ethics at the University of Pennsylvania, said Mad Pride shouldn't take a one-size-fits-all policy, and the movement doesn't take into account those suffering mental illness who are a danger to themselves or others if they remain un-medicated.

"There are people who turn violent," Caplan said. "They don't want to take their medications. ... I'd rather see situations where we protect other people by sometimes forcing medicine, if that's the situation."

However, similar to Oaks, Shive chooses alternatives to monitor her emotional episodes and also uses what she calls her "mad map" instead of taking medication. On paper, she plots out the triggers that can lead to mania, and couples them with her coping mechanisms.

She also keeps a list of "3 a.m. allies" -- people she can call in case she needs help. This group knows in advance what to do for Shive in emergency situations.

For example, they understand that Shive wishes to be taken to a hotel room, instead of a hospital ER, if she undergoes a manic episode, or what she prefers to call an extreme state of consciousness.

Shive isn't the only one who is finding new ways of coping with their mental illness. Groups like The Freedom Center in Northampton, Mass., or The Recovering Learning Community in Holyoke, Mass., offer alternative treatments for those with mental illness. Activities include acupuncture, massage, and peer-to-peer support.

Part Two of the ABC Report Online:

For One Family, Decision to Reject Treatment Ends With Tragic Death

Amy Bruce Murdered by Son After He Stopped Taking Medication

By IA ROBINSON and ASTRID RODRIGUES

One out of four adults in the United States -- close to 60 million people -- is diagnosed every year with some form of mental disorder, according to the National Institute of Mental Health. At the same time, more Americans than ever are relying on prescription drugs to treat the disorders.

But for members of the grass-roots activist movement known as "Mad Pride," medication isn't always the answer. Instead, they believe in embracing their mental disorders as something more than a disability or illness. Rather than alter what they believe is a useful and powerful "gift," Mad Pride activists say individuals have the inherent right to choose whether to take their prescribed medications.

Watch "Primetime: Outsiders" today at 10 p.m. ET.

David Oaks, a prominent Mad Pride activist and leader of the mental health advocacy organization, MindFreedom International of Eugene Ore., was once diagnosed with schizophrenia and bipolar disorder. Despite the diagnosis, Oaks does not take medication. "My empowerment is part of my recovery in that I have choice," he said.

But while the Mad Pride movement has gained steam in recent years, it is not without its detractors. Joe Bruce of Caratunk, Maine, says he knows all too well what a tragic mistake rejecting treatment can be.

In June 2006, Bruce made a chilling call to 911 that he never imagined he would have to make.

Bruce and his wife, Amy, raised their three boys in the tiny New England town with a population of a little more than 100 people. Bruce says there was always something unique about their oldest son, William, better known as Willy.

"Throughout his childhood," Bruce said, "he would be the kid that would play rougher. ... He had a disturbing way of not considering other people. It was very difficult for his mother Amy [because she] was a person that wanted to raise her kids to care about other people."

At the time, the Bruce's suspected it was just a stage that Willy would grow out of.

Instead, Willy grew into an increasingly troubled young man. More worrisome than failing grades in school, Willy had minor run-ins with the law, suicidal tendencies and would go for days without sleeping.

Decision to Reject Treatment Ends in Tragedy

Bruce recalled a chilling turning point in December 2003, when Willy exhibited frightening paranoia.

He told Bruce, "Dad, there's people watching me, the CIA had planted a device under my skin.'"

It was then that the Bruce's realized their son might be mentally ill.

By March 2005, Willy's troubles were painfully clear: At target practice, he threatened two longtime family friends with a loaded AK-47 assault rifle.

Through tears, Bruce remembered that dark day. A Maine state trooper was sent to question Willy, whose paranoia was clearly on display. "He pointed at the ceiling and he said, 'It's bugged,'" Bruce, 57, said.

In the next year, Willy underwent psychiatric evaluations. First diagnosed with bipolar disorder and then paranoid schizophrenia,Willy was eventually admitted to the Riverview Psychiatric Center, a long-term inpatient facility in Augusta, Maine.

But at the age of 24, Willy was old enough to legally refuse psychiatric treatment. Despite warnings from his parents and several doctors that he was a serious risk if he discontinued treatment, he was soon released, after less than three months at Riverview.

"He didn't want help, he didn't want medicine," Bruce said. "He insisted there was nothing wrong."

Willy's behavior quickly deteriorated and became more dangerous. "We began finding knives and stuff put in different places," he said.

Bruce laments that his son was the worst he had ever seen him, and he feared for the safety of his wife and two younger sons.

By June 2006 -- two months after Willy's return from Riverview -- Bruce had become so worried that he called home several times a day just to check in on Amy.

One morning, she didn't pick up.

"I called her at 9 o'clock in the morning and there was no answer. ... I called again and there was no answer. I was starting to get very anxious," he said.

With an instinctive feeling that something was wrong, Bruce decide to leave work early and return home.

"I opened the door ... I could see big splotches of blood ... and I opened the bathroom door and I saw two legs sticking out of the bathtub ... and I saw that it was Amy," he said.

Willy had murdered his 47-year-old mother with a hatchet, and later told officials he thought the Pope had ordered him to kill her because she was an Al-Qaeda operative.

'I Miss Everything About Her. I Miss Getting Hugs From Her the Most,' Says Son Who Killed His Mother

In 2007, Willy was found not guilty by reason of insanity. Today, diagnosed with paranoid schizophrenia, Willy is back at the Riverview Psychiatric Center, but this time indefinitely.

With his father by his side, Willy, now 28, told ABC News what was running through his mind at the time of the crime, and why he rejected treatment. "I didn't believe I was ill," he said. "In fact, I totally took a stand ... completely fought against them about it."

Bruce and his son have agreed to share their story in hopes that something like this never happens again. Bruce blames the poorly treated illness and cracks in the mental health system for the horror he has had to live though. "[Willy] had lost everything when mental illness took over his mind," Bruce said.

Today, at age 28, Willy is remorseful. "I miss everything about her," he said. "I miss getting hugs from her the most, though."

Willy is taking college classes via correspondence while at Riverview, and even hopes to become a lawyer someday -- but say he now takes his medication religiously.

"If somebody's sick, they need to be medicated," Willy said. "There's a chance that they could commit a serious crime. I ended up ... killing my mother and ... I definitely feel the illness should go medicated, not un-medicated."

But, right now, in Northampton, Mass., Caty Simon, 28, is attempting exactly what the Bruce family fears most: She is gradually withdrawing from her psychiatric medication.

In her lifetime, Simon, who works with the a Mad Pride group called The Freedom Center, says she has taken everything from Zyprexa to Prozac to Wellbutrin to Depeco. Now she's attempting to wean herself off one last drug --- benzodiazepines, which are often used to treat anxiety and panic disorders -- using Mad Pride's instructions on how to withdraw from psychiatric medications.

In a video diary she shared with ABC News, Simon gives her account of what it's like to withdraw from meds so others could see how it can be done safely and effectively.

Mad Pride Activist Says She Was 'Treated Like a Misbehaving Child'

Although the slow withdrawal is tough -- she experienced muscles aches and insomnia -- Simon believes taking meds or being hospitalized is a worse fate. "You're straight-jacketed," said Simon, who was institutionalized for three separate suicide attempts as a teenager. "You're forced to ingest these chemicals. You're patronized. You're treated like a misbehaving child."

For her, the unpleasant side effects of withdrawal are worth it, because, she said, her medications were doing more harm than good.

"As soon as I started taking [the drugs] ... I really started like feeling this cognitive impairment ... I couldn't remember things as easily," she said.

Those who oppose the Mad Pride philosophy worry that by rejecting medication, Simon could soon become a ticking time bomb, like Willy Bruce.

But Mad Pride activists say that medication doesn't necessarily stop people from exploding in violence. After all, infamous Columbine High School shooter Eric Harris took part in the killing of 12 fellow students while taking the anti-depressant Luvox. Some would argue that it's a classic case of how violence is unpredictable -- with or without drugs.

Still, for ethicist Art Caplan and other critics of the Mad Pride movement, the greatest area of concern are people who are so severely ill that they cannot make an informed decision about their treatment.

"It isn't all self-determination," said Caplan, a professor of bioethics at the University of Pennsylvania in Philadelphia. "Some people are really severely mentally ill. They're not picking anything. Their mental illness overwhelms them. We see them sometimes on the street, as homeless. Those aren't the people that are going to be showing up at a Mad Pride movement, and they're certainly not the people who are going to be helped by saying well, 'You have your rights.' ... I don't find that morally acceptable at all."

Still, as the debate rages on, Oaks and the Mad Pride movement are determined to treat mental illness and violence as two separate issues.

"You can drug people into silence," Oaks said, "but you really need to involve the whole society in addressing the sickness of violence, which is ... a deep societal problem."

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