On 25 August 2009, ABC-TV national television ran a story on MAD PRIDE on their Primetime “Outsider” show. Several mental health advocates, including MindFreedom director David Oaks, were interviewed. Here is the text from their online summary of the story, in two parts.
Text of ABC-TV Online Story on Mad Pride, Mental Health Rights, and Alternative Mental Health (Part 1 & 2)
Source: ABC-TV Primetime
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
Imagineif Vincent Van Gogh — an artist who was famously afflicted with mentalhealth issues — had been forcibly injected with an antipsychotic druglike Thorazine. Or if Leonardo Da Vinci’s genius had been affected byantidepressants 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’sa question being asked by a growing grass roots movement about 8,000members strong — many of whom are rejecting pharmaceutical solutionsfor psychiatric conditions and fighting the stigmatization and shame ofmental 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.
Madpride supporters — many dealing with serious mental disorders — arenow boldly coming out of the closet. Actor Joe Pantoliano of “TheSopranos” 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.
Itwasn’t until being diagnosed with clinical depression that Pantolianorealized he had spent years self-medicating his anguish.
“AllI’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 itgo 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 .
Pantolianohas set out to help others cast off the stigma and shame he said isattached to mental health issues. He created a nonprofit organization,No Kidding, Me Too!, “based on accepting, encouraging people to admitto their disease — to seek treatment and become even greater membersof society.”
Enlisting a crew of celebrities — including RobinWilliams, Samuel Jackson, and Robert Downey, Jr. — Pantoliano’sorganization assembles industry professionals who support its missionto 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’
Pantolianotreats his mental illness with medication, but others who are embracingtheir madness choose not to, just like spunky musician and activist,Madigan Shive. Shive is an active member of The Icarus Project, one ofthe many Mad Pride organizations that encourage viewing madness asbrilliance.
Shive hears voices, she has delusions, but it’s hermadness that she cherishes. Though she was once diagnosed as bi-polar,Shive is now reluctant to give herself a psychiatric label.
“Iknew right away, taking the traditional bio-medical route wasn’t whatwas going to be healthy for me,” she said. “I don’t take any of themedications that someone, like myself, in a typical scenario would beprescribed. But I know some people who do and use it smashingly welland I support all that.”
Shive insisted her madness is part ofwhat makes her distinctively unique, and she believes that psychiatricdrugs would only taint her “mad gift.”
“I take it verypersonally,” she said. “Please don’t change this thing in me thatcreates this music and keeps me alive. … I need my madness.”
Someworry that refusing meds is a dangerous game for people with mentalillness, especially after hearing about cases such as the University ofNorth Carolina law student who, in January 1995, gunned down a popularlacrosse student and a McDonald’s manager because he sufferedschizophrenic delusions; or the Virginia Tech shooter Seung-hui Cho,who killed 32 people and wounded 25; and, of course, the infamous JohnHinckley Jr., who attempted to assassinate President Ronald Reagan in1981 and was eventually found not guilty by reason of insanity.
Ineach incident, people believed to suffer from mental illness werebelieved to be unmedicated and untreated at the time of their crimes.
Mad Pride Activists Say They Are ‘Anti-Bullying,’ Not Anti-Medication
ButDavid Oaks, a prominent Mad Pride activist and a leader of the advocacyorganization MindFreedom International, agreed with others in the MadPride movement who feel stereotyping the mentally ill is a seriousmistake.
“The vast majority of people with psychiatricdiagnoses,” Oaks said, “including serious psychiatric diagnoses likeschizophrenia and psychosis and bipolar — we’re law-abiding, we’repeaceful.”
Oaks said MindFreedom International seeks to work forsocial change in the mental health system. He stresses that Mad Prideis not anti-medication, but rather it is anti-bullying, and he assertsthat it should be a patient’s choice whether or not to acceptmedication.
Most of our members have experienced things likeforced drugging,” Oaks said. “We are people who have experienced humanrights abuses in the mental health system.”
Oaks’ personalexperience propelled his involvement in mental health advocacy. Oaks isa Harvard graduate who was diagnosed with schizophrenia and bi-polardisorder in the 1970s, while still a student at the prestigiousuniversity.
“I thought the CIA was making my teeth grow, Ithought the TV was personally talking just to me, that the radio hadthe voice of God,” Oaks recalled.
Overwhelmed by delusions, Oakswas admitted into a psychiatric institution, where he says he wastreated aggressively and forcibly medicated.
“They brought me toa solitary confinement room, and I always remember being pushed down ona bare mattress and having my pants ripped down and getting forcedinjections more than once,” Oaks said.
Today, 33 years later, heproudly calls himself a “psychiatric survivor.” Oaks chooses to treathis mental problems with alternatives to medication, such asspecialized nutrition, exercise and gardening.
Critics Say Rejecting Medication Is Nothing But Reckless
Butcritics argue that rejecting one’s medication in favor of usingalternative treatments alone is nothing but reckless. Art Caplan, aprofessor of medical ethics at the University of Pennsylvania, said MadPride shouldn’t take a one-size-fits-all policy, and the movementdoesn’t take into account those suffering mental illness who are adanger to themselves or others if they remain un-medicated.
“Thereare people who turn violent,” Caplan said. “They don’t want to taketheir medications. … I’d rather see situations where we protect otherpeople by sometimes forcing medicine, if that’s the situation.”
However,similar to Oaks, Shive chooses alternatives to monitor her emotionalepisodes and also uses what she calls her “mad map” instead of takingmedication. On paper, she plots out the triggers that can lead tomania, and couples them with her coping mechanisms.
She alsokeeps a list of “3 a.m. allies” — people she can call in case sheneeds help. This group knows in advance what to do for Shive inemergency situations.
For example, they understand that Shivewishes to be taken to a hotel room, instead of a hospital ER, if sheundergoes a manic episode, or what she prefers to call an extreme stateof consciousness.
Shive isn’t the only one who is finding newways of coping with their mental illness. Groups like The FreedomCenter in Northampton, Mass., or The Recovering Learning Community inHolyoke, Mass., offer alternative treatments for those with mentalillness. Activities include acupuncture, massage, and peer-to-peersupport.
Part Two of the ABC Report Online:
For the original article and photos, and to comment on the Part 2 piece, please click here: http://abcnews.go.com/Primetime/story?id=8399298
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
Oneout of four adults in the United States — close to 60 million people– is diagnosed every year with some form of mental disorder, accordingto the National Institute of Mental Health. At the same time, moreAmericans than ever are relying on prescription drugs to treat thedisorders.
But for members of the grass-roots activist movementknown as “Mad Pride,” medication isn’t always the answer. Instead, theybelieve in embracing their mental disorders as something more than adisability or illness. Rather than alter what they believe is a usefuland powerful “gift,” Mad Pride activists say individuals have theinherent right to choose whether to take their prescribed medications.
Watch “Primetime: Outsiders” today at 10 p.m. ET.
DavidOaks, a prominent Mad Pride activist and leader of the mental healthadvocacy organization, MindFreedom International of Eugene Ore., wasonce diagnosed with schizophrenia and bipolar disorder. Despite thediagnosis, Oaks does not take medication. “My empowerment is part of myrecovery in that I have choice,” he said.
But while the MadPride movement has gained steam in recent years, it is not without itsdetractors. Joe Bruce of Caratunk, Maine, says he knows all too wellwhat 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.
Bruceand his wife, Amy, raised their three boys in the tiny New England townwith a population of a little more than 100 people. Bruce says therewas always something unique about their oldest son, William, betterknown as Willy.
“Throughout his childhood,” Bruce said, “hewould be the kid that would play rougher. … He had a disturbing wayof not considering other people. It was very difficult for his motherAmy [because she] was a person that wanted to raise her kids to careabout 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 thanfailing 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.
ByMarch 2005, Willy’s troubles were painfully clear: At target practice,he threatened two longtime family friends with a loaded AK-47 assaultrifle.
Through tears, Bruce remembered that dark day. A Mainestate trooper was sent to question Willy, whose paranoia was clearly ondisplay. “He pointed at the ceiling and he said, ‘It’s bugged,'” Bruce,57, said.
In the next year, Willy underwent psychiatricevaluations. First diagnosed with bipolar disorder and then paranoidschizophrenia,Willy was eventually admitted to the RiverviewPsychiatric Center, a long-term inpatient facility in Augusta, Maine.
Butat the age of 24, Willy was old enough to legally refuse psychiatrictreatment. Despite warnings from his parents and several doctors thathe was a serious risk if he discontinued treatment, he was soonreleased, 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’sbehavior quickly deteriorated and became more dangerous. “We beganfinding 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.
ByJune 2006 — two months after Willy’s return from Riverview — Brucehad become so worried that he called home several times a day just tocheck in on Amy.
One morning, she didn’t pick up.
“Icalled her at 9 o’clock in the morning and there was no answer. … Icalled again and there was no answer. I was starting to get veryanxious,” he said.
With an instinctive feeling that something was wrong, Bruce decide to leave work early and return home.
“Iopened the door … I could see big splotches of blood … and I openedthe bathroom door and I saw two legs sticking out of the bathtub …and I saw that it was Amy,” he said.
Willy had murdered his47-year-old mother with a hatchet, and later told officials he thoughtthe Pope had ordered him to kill her because she was an Al-Qaedaoperative.
‘I Miss Everything About Her. I Miss Getting Hugs From Her the Most,’ Says Son Who Killed His Mother
In2007, Willy was found not guilty by reason of insanity. Today,diagnosed with paranoid schizophrenia, Willy is back at the RiverviewPsychiatric Center, but this time indefinitely.
With his fatherby his side, Willy, now 28, told ABC News what was running through hismind at the time of the crime, and why he rejected treatment. “I didn’tbelieve I was ill,” he said. “In fact, I totally took a stand …completely fought against them about it.”
Bruce and his son haveagreed to share their story in hopes that something like this neverhappens again. Bruce blames the poorly treated illness and cracks inthe 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.”
Willyis taking college classes via correspondence while at Riverview, andeven hopes to become a lawyer someday — but say he now takes hismedication religiously.
“If somebody’s sick, they need to bemedicated,” Willy said. “There’s a chance that they could commit aserious crime. I ended up … killing my mother and … I definitelyfeel the illness should go medicated, not un-medicated.”
But,right now, in Northampton, Mass., Caty Simon, 28, is attempting exactlywhat the Bruce family fears most: She is gradually withdrawing from herpsychiatric medication.
In her lifetime, Simon, who works withthe a Mad Pride group called The Freedom Center, says she has takeneverything from Zyprexa to Prozac to Wellbutrin to Depeco. Now she’sattempting to wean herself off one last drug — benzodiazepines, whichare often used to treat anxiety and panic disorders — using MadPride’s instructions on how to withdraw from psychiatric medications.
Ina video diary she shared with ABC News, Simon gives her account of whatit’s like to withdraw from meds so others could see how it can be donesafely and effectively.
Mad Pride Activist Says She Was ‘Treated Like a Misbehaving Child’
Althoughthe slow withdrawal is tough — she experienced muscles aches andinsomnia — Simon believes taking meds or being hospitalized is a worsefate. “You’re straight-jacketed,” said Simon, who was institutionalizedfor three separate suicide attempts as a teenager. “You’re forced toingest these chemicals. You’re patronized. You’re treated like amisbehaving child.”
For her, the unpleasant side effects ofwithdrawal are worth it, because, she said, her medications were doingmore harm than good.
“As soon as I started taking [the drugs]… I really started like feeling this cognitive impairment … Icouldn’t remember things as easily,” she said.
Those who opposethe Mad Pride philosophy worry that by rejecting medication, Simoncould soon become a ticking time bomb, like Willy Bruce.
But MadPride activists say that medication doesn’t necessarily stop peoplefrom exploding in violence. After all, infamous Columbine High Schoolshooter Eric Harris took part in the killing of 12 fellow studentswhile taking the anti-depressant Luvox. Some would argue that it’s aclassic 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 thatthey cannot make an informed decision about their treatment.
“Itisn’t all self-determination,” said Caplan, a professor of bioethics atthe University of Pennsylvania in Philadelphia. “Some people are reallyseverely mentally ill. They’re not picking anything. Their mentalillness overwhelms them. We see them sometimes on the street, ashomeless. Those aren’t the people that are going to be showing up at aMad Pride movement, and they’re certainly not the people who are goingto be helped by saying well, ‘You have your rights.’ … I don’t findthat morally acceptable at all.”
Still, as the debate rages on,Oaks and the Mad Pride movement are determined to treat mental illnessand violence as two separate issues.
“You can drug people intosilence,” Oaks said, “but you really need to involve the whole societyin addressing the sickness of violence, which is … a deep societalproblem.”
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