One out of four adults in the United States — close to 60 million people – is diagnosed every year with some form of mental disorder, and about one in 17 suffers from a serious mental illness, 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.
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 Bruces 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 Bruces 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 — and says 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 Deprico. Now she’s attempting to wean herself off one last drug — benzodiazepines, which are often used to treat anxiety and panic disorders. Simon followed Mad Pride’s own instructions on how to safely withdraw from medications, published in booklets such as “The Harm Reduction Guide to Coming Off Psychiatric Drugs.”
In a video diary she shared with ABC News, Simon gives her account of what it’s like to withdraw from meds so that 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.”
Excerpt: Will was the first child, and never easy.
At 4, he shoved his 3-year-old brother Bob, nicknamed Bubba, down a flight of stairs and broke his arm.
At 5, he pushed Bubba so hard on a seesaw swing that it shattered one of his brother’s legs. Joe used a Newsweek magazine to form a splint until he could get Bubba to the hospital.
At 10, Will twice climbed to the top of the home’s pitched tin roof and threatened to jump off. He had to be talked down.
At 15, he left a note in the home that said: “By the time you find me, I will have injected the antifreeze in my neck.” Joe sprinted to an outbuilding and found Will on the ground, a syringe in his arm.
Will was admitted to the adolescent ward of a psychiatric hospital. Amy and Joe were told their son might suffer from bipolar disorder, but there was no formal diagnosis. Will was prescribed Depakote, an anti-seizure medication sometimes used for psychiatric conditions [“bipolar disorder”]. Suddenly, he could carry on conversations in ways he couldn’t before. But he complained the pills made his head hurt, and he stopped taking them almost as quickly as he’d begun — a pattern that would persist in the years ahead.
Mom and Dad arranged for Will to meet with a psychiatrist in a nearby town. He rejected the doctor, then a second one before finding a therapist he seemed to like. But he grew more defiant, drinking heavily and smoking weed. He skipped classes and dropped out of high school halfway through his sophomore year.
At 17, Will took his GED test to qualify for the Army. He went through boot camp in the fall of 2000 and advanced infantry training at Fort Polk in Louisiana. Growing up in the country and learning his way around guns helped him earn high marks as a sharpshooter.
Joe and Amy were ecstatic, thinking he had turned a corner.
Will shipped out to Schofield Barracks, an Army installation in Hawaii. It was there, his father says, that Will got into everything from crystal meth to cocaine. One day in 2001, Will showed up at the family home. He was AWOL. He made it back to Hawaii so he wouldn’t face desertion charges. He took a less-than-honorable discharge to avoid jail time for absence without leave.
By then, Will was an adult, in charge of his own health care. Mom and Dad worried about him, but he wouldn’t listen to their pleas.