Fwd: LA Times Magazine on MAD PRIDE Movement, MindFreedom & David Oaks

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LA Times Magazine on MAD PRIDE Movement, MindFreedom & David Oaks

 

_Sunday LA Times Magazine_ October 26, 2003

 

Losing the Mind

 

David Oaks and Others in the 'Mad Pride'

Movement Believe Drugs Are Being Overused in

Treating Mental Illness, and They Want the

Abuse to Stop.

 

By David Davis

 

Standing on a concrete island in downtown

San Francisco, David Oaks yells into a

bullhorn the climactic line from the film

" Network " : " We're mad as hell and we're not

going to take it anymore. "

 

The line would be a cliché if it weren't for

one thing: Oaks means to be taken literally.

 

On this sunny day, as thousands of

mental-health professionals stream into the

air-conditioned cool of the Moscone Center

for the 156th annual meeting of the American

Psychiatric Assn., Oaks and his cadre of

supporters are quite mad, thank you. They

are former patients in what many would call

a dysfunctional mental-health system.

 

As protesters carry signs that read

" Psychiatrists Cure Dissent, Not Disease "

and " Self Help Works, " Oaks invokes his holy

trinity of social activists -- Martin Luther

King Jr., Cesar Chavez and Justin Dart, the

father of the Americans with Disabilities

Act. " We're calling for a nonviolent, global

revolution of self-determination and

empowerment, " he says, eyes dancing. " The

inmates are ready to take over the asylum. "

 

Soft-spoken and even-keeled in private, Oaks

unleashes his rage publicly by tapping into

the trauma he experienced as a patient in

the mental-health system. In the 1970s,

while he was a student at Harvard

University, Oaks was diagnosed as

schizophrenic. He was institutionalized and

forcibly medicated. He recovered, he says,

by rejecting drugs and getting support from

family and friends. " I was put on Haldol and

Thorazine, and it was torture, " he tells the

San Francisco crowd. " They took a wrecking

ball to the cathedral of my mind. "

 

Oaks, now 48, is executive director of

MindFreedom Support Coalition International,

a Eugene, Ore.-based umbrella group for the

" Mad Pride " movement. The grass-roots

campaign, also known as " MindFreedom, "

includes so-called psychiatric survivors and

dissident psychiatrists who reject the

biomedical model that defines contemporary

psychiatry. They say that mental illness is

caused by severe emotional distress, often

combined with lack of socialization, and

they decry the pervasive treatment with

prescription drugs, sales of which have

nearly doubled since 1998. Further, they

condemn the continued use of

electro-convulsive therapy -- or ECT, also

known as electroshock -- which they say

violates patients' human rights.

 

Theirs is a philosophy born of " being chewed

up and spit out by the system, " says Oaks,

and their views pit them against nearly

everyone within the medical establishment,

including American Psychiatric Assn.

members, the pharmaceutical companies that

increasingly fund drug development and

testing, and even the National Alliance of

the Mentally Ill, a prominent advocacy

group.

 

Broadly speaking, those organizations

believe that decades of research have proven

that schizophrenia, bipolar, severe

depression and other mental disorders are

biological illnesses of the brain caused by

some undiscovered combination of genetic,

neurochemical and social factors. They

believe that, along with psychotherapy,

these illnesses should be treated with drugs

(and sometimes a panoply of drugs) that

target the biochemical mechanisms of

psychiatric disorders.

 

" Our brains are biological organs by their

very nature, " says Dr. Paul Appelbaum, past

president of the American Psychiatric Assn.

" Any disorder is in its essence a biological

process. "

 

Given the expertise and money involved in

those organizations, Oaks and his allies

would seem to face hopeless odds.

MindFreedom operates on the fringe of the

mental-health community; its protest in

front of the Moscone Center drew all of 100

people. Oaks admits that he has no evidence

to dispute the medical-scientific model of

mental illness. What he and his small army

do have is look-in-the-mirror evidence about

their recovery from mental illness, often

accomplished by not taking medication. They

also trumpet evidence that, notwithstanding

the experts' medical degrees and their

" miracle " drugs, confirms that the nation's

mental illness system is in crisis. Consider:

 

*** Four of the 10 leading causes of

disability worldwide are neuro-psychiatric

disorders, according to a 2001 World Health

Organization study.

 

*** The National Institute of Mental Health

estimated in its most recent study in 1995

that the annual cost of mental illness in

the U.S., including medical care and lost

productivity, was $185 billion.

 

*** Only about one in five Americans with

major depression receives adequate care,

according to a recent _Journal of the

American Medical Assn._ study.

 

*** More than 30,000 Americans committed

suicide in 2001, 10,000 more than those

killed in homicides that year.

 

" The system is broken, " says Robert

Whitaker, author of " Mad in America: Bad

Science, Bad Medicine and the Enduring

Mistreatment of the Mentally Ill. " " The

so-called triumph of the

psychiatric-pharmaceutical model has

produced the horrible outcomes we have

today. "

 

Given those outcomes, can anyone completely

dismiss the experiences of people who have

lived with, and overcome, mental illness?

 

In conversation, Oaks is earnestly

persuasive. He keeps his wavy hair tied back

in a ponytail, and his pale blue eyes are

hidden behind clunky glasses. Because of a

fused spine, he is unable to turn his head

normally.

 

The incidents that turned him into a radical

activist occurred during his sophomore and

junior years at Harvard. He arrived in

Cambridge in 1973 on an academic

scholarship, a working-class kid from

Chicago's South Side who wanted to study

government and economics (or, as he calls

it, " power and money " ).

 

Intimidated by Harvard's lofty reputation

and the boarding-school backgrounds of many

of his classmates, Oaks says he struggled to

find his place. After experimenting with

marijuana during his sophomore year, he

entered what he describes as " an altered

state. " He heard voices and believed he was

communicating with God -- classic signs of

schizophrenia, a disease suffered by more

than 2 million Americans.

 

At the college infirmary, Oaks was given

medication that included heavy doses of

Thorazine, an anti-psychotic drug. Oaks says

he only managed to take Thorazine for 10 days

before quitting. " It just wiped me out, " he

says.

 

He managed to finish the term, then returned

to Harvard after the summer. Again he smoked

pot and experienced hallucinations. " I

thought the CIA was making my teeth grow,

and the TV was talking to me, and God was

communicating with me through the radio. "

 

This time he was taken to McLean Hospital,

where Nobel Prize-winning mathematician John

Nash ( " A Beautiful Mind " ) and poets Robert

Lowell and Sylvia Plath had been treated.

Oaks says he was locked in solitary

confinement and underwent what patients call

" a gooning, " or forced drugging. " The male

attendants hold you, pull down your pants

and inject you in the butt, " he says. " It

felt incredibly intrusive and humiliating. I

felt like it was about them dominating my

being rather than about helping me. "

 

He left McLean after one month, then flushed

his remaining lithium down the toilet. He

then found the Boston-based Mental Patients

Liberation Front, one of the original rights

groups for mentally ill patients, where he

learned how to eat healthfully and exercise,

to ask for and get support from peers, to

feel part of a community.

 

The latter half of the 1970s was a heady

time for psychiatric survivors. Former

patient Judi Chamberlin had just written " On

Our Own, " her critique of the mental-health

system that has since become the movement's

bible. Support groups sprang up across the

nation. Their message: Recovery is possible

through housing arrangements, job training

and rehabilitation. " The doctors told me I

had a broken brain, " Oaks says. " They told

me there was nothing I could do about it.

Well, I did get better. "

 

The self-empowerment model provides hope for

those recovering from mental illness, says

Dr. Daniel Fisher, a psychiatrist and

executive director of the National

Empowerment Center, an information

clearinghouse for medical services

consumers. " People need to realize that they

can and do fully recover from mental illness,

but they have to be an agent in their own

life. If they're a passive recipient [of

care], they're worse off. They may not have

severe symptoms anymore, but they're never

going to go out and get a job. "

 

Oaks worked with the Mental Patients

Liberation Front for four years before

moving to Berkeley and then settling in

Eugene. Throughout the 1980s, he organized

rallies against the American Psychiatric

Assn., protested the revival of electroshock

therapy and wrote for Madness Network News, a

now-defunct magazine for the nation's

psychiatric survivors. In 1990, he and

others founded Support Coalition. Now called

MindFreedom, it has an annual budget of about

$80,000, which comes from membership fees,

donations and sales of books and T-shirts.

 

Some 100 grass-roots groups have joined as

sponsors. Bearing names such as " Prozac

Survivors Support Group, " " Women Prisoners

Convicted by Drugging " and " Network Against

Psychiatric Assault, " they promote

alternative options for psychiatric

treatments.

 

" The fact that the movement has survived is

due in large part to David's ability to work

like a dog for almost no money and his

ability to mollify those people who are

outraged, " says Dr. Loren Mosher, former

director of the National Institute of Mental

Health who resigned from the American

Psychiatric Assn. over what he dubs the

" unholy alliance " between psychiatrists and

drug companies. " He has managed to keep a

lot of disparate opinions under the tent. "

 

Oaks quips that he is now " quote-unquote

normal " by society's reckoning. He owns a

home, is happily married and works full time

with MindFreedom. He boasts that the movement

to which he's devoted his life has earned

respect and tangible gains. State and

federal governments routinely fund local

community drop-in centers, support groups

and the annual " Alternatives " conference.

The survivors' perspective is included in

President Bush's New Freedom Commission on

Mental Health, while MindFreedom has been

accredited by the United Nations as a

nongovernmental organization with consulting

status.

 

Psychiatric survivors now have " a seat at

the table, " says Sally Zinman, executive

director of the Sacramento-based California

Network of Mental Health Clients.

 

At the American Pychiatric Asn. convention,

it's not difficult to see what Oaks is up

against. The floor of the Moscone Center

resembles a brightly colored field of

California poppies. Dozens of carpeted

booths, in lavish hues of aqua green and

shocking purple, line the gigantic hall,

each one trumpeting the benefits of

modern-day pharmacology. Here's Paxil, for

relief of anxiety; there's Zoloft, to combat

depression; and here's Ritalin, for

attention-deficit disorder. Even the

schedule for the hotel shuttle buses is

" sponsored " by Risperdal, a popular

treatment for schizophrenia.

 

The effect is, at once, soothing and

disquieting. Help is at hand, these drugs

promise, while the sheer volume of products

screams: You Need Help, Now!

 

Oaks and other Mad Pride advocates emphasize

that they're not anti-drug; many of their

members take medication to overcome mental

illness. What they object to is the

pervasiveness of medicating every facet of

human behavior. " This pill-for-every-ill

method is just a quick fix that treats the

symptoms, not the problems, " says Fisher.

" We've lost something along the way --

connecting with people and helping them. "

 

Many of these highly touted drugs, notes

journalist Whitaker, have been deemed

harmful. Thorazine was introduced by

pharmaceutical giant Smith, Kline & French

in 1954, when many psychiatrists believed

that it and other " mind-ordering "

anti-psychotics would help patients recover.

Its development, according to one medical

historian, " initiated a revolution in

psychiatry, comparable to the introduction

of penicillin in general medicine. "

Thorazine proved effective, but it also had

debilitating side effects. Some patients

developed symptoms similar to those of

Parkinson's disease, including a shuffling

gait and drooling. Permanent brain damage

can occur.

 

Thorazine has been replaced by a new

generation of anti-psychotics known as

atypicals, which psychiatry boasts are more

effective in treating schizophrenia. But

research would appear to bolster Mad Pride's

claim that the drugs have unintended side

effects. This year, a Veterans

Administration study indicated that certain

atypicals increase the risk of diabetes in

some patients.

 

In addition, studies have demonstrated that

the drugs currently used to combat

depression -- known as SSRIs, or selective

serotonin reuptake inhibitors -- are

dangerous for some patients. The United

Kingdom has banned the use of Paxil in

children under 18 following a spate of

suicides; the FDA announced that it will

re-examine clinical trial data on Paxil. And

the _Archives of General Psychiatry_ reported

that SSRI use during late pregnancy may cause

neurological disorders in babies.

 

Many in the Mad Pride movement blame the

pharmaceutical companies' deep pockets. The

companies routinely bankroll the studies

published in the most prestigious medical

journals -- often without the public's

awareness of this practice. According to

pharmaceutical sales data and information

from the consulting company IMS Health,

sales of psychotherapeutics reached $21

billion in 2002, almost double the $11

billion in sales in 1998.

 

Even one of Oaks' most vocal critics, Dr. E.

Fuller Torrey, president of the board of the

Arlington, Va.-based Treatment Advocacy

Center, agrees that psychiatry has been

usurped. " Many of my colleagues have

accepted more money [for research and as

gifts] than they should have, " he says.

" This is a huge problem. "

 

But Rick Birkel, executive director of the

National Alliance of the Mentally Ill,

defends the drug companies as funding

critical research and development of

lifesaving drugs. " We couldn't do this work

-- we couldn't make the advances we've made

-- without industry developing psychiatric

drugs. Those medications allow some people

to live the lives they want. "

 

Drugs aside, the treatment Oaks objects to

most vehemently is electroshock therapy. ECT

induces a series of epileptic-like seizures

through shocks to the brain. Although its

use diminished in recent decades as drugs

became more prevalent, ECT has made a quiet

comeback as a last-resort treatment for the

severely depressed. In California, one of a

handful of states that require tracking of

ECT, the Department of Mental Health reports

that nearly 3,200 patients have received ECT.

 

According to Torrey, ECT is effective in

emergency situations. " ECT is a primitive

form of therapy, but it's the only form that

works for some severely depressed patients, "

he says. " We will all be happy when we can

develop something different, but ECT can be

a lifesaver. "

 

Oaks considers ECT " barbaric, " with a high

relapse rate, and notes that it often causes

memory loss. He says that, in certain

situations, ECT is administered without

patients' consent. This gets to the heart of

MindFreedom's philosophy; to Oaks and his

allies, such invasiveness is a violation of

civil rights. As pioneer activist Chamberlin

put it, " If it isn't voluntary, it isn't

treatment. "

 

To the medical establishment, this is

heresy. Its members have lobbied for laws

that mandate involuntary treatment of the

severely mentally ill, including

California's AB-1421, also known as Laura's

Law, named for the 19-year-old woman shot to

death by someone who was mentally ill.

Without such safeguards, they argue,

patients could harm themselves or others.

 

" There are a small percentage with mental

disorders who by virtue of the disorder lose

the insight into their own condition to

appreciate they're ill and that they need

treatment, " Appelbaum says. " Mental illness

is no different than other illnesses that

may impair the decision-making capacity of

an individual. "

 

Counters Chamberlin, " It's a coercive system

by its nature, one that doesn't listen to,

much less respect, the people. The person

thinks her life is worse [on medication],

but the doctor says she's better. He's the

judge, jury and executioner. "

 

By staking out turf at the fringe of the

survivors' movement, Oaks regularly clashes

with the National Alliance of the Mentally

Ill, which bills itself as a " grass-roots,

self-help, support and advocacy organization

of consumers, families and friends of people

with severe mental illnesses. " Oaks and

others accuse the group of taking

substantial donations from pharmaceutical

companies. The result, he says, is that the

drug industry has appropriated it. " They

want a simple answer, " he says. " They want

to dam up the problems, even if that means

forcible drugging and years of being locked

up in an institution. As long as an adult

child isn't homeless or openly hurting

themselves, they think it's a success. "

 

Birkel says the alliance does accept

millions in drug company donations,

estimating that the money is about 20% of

the group's budget. He defends the practice,

saying that " all advocacy groups in the

health fields take donations from the

pharmaceutical industry. The real issue is

how do you maintain independence? We can

walk away from the pharmaceutical industry

on any issue. "

 

Birkel claims that Oaks is targeting the

wrong groups. " I don't know what they do,

other than the protests, " Birkel says. " I

don't think they're the good guys. "

 

Other survivors, however, believe that Oaks'

radical politics serve as a necessary

counterbalance. " David is like the Malcolm X

of the psychiatric survivor movement, " says

Zinman of the California Network of Mental

Health Clients. " He's out there speaking the

truth in all its rawness and purity. "

 

Oaks and the psychiatry establishment may

disagree philosophically, but they do agree

on one point: America's mental-health system

is in a shambles. " At a time when treatment

for psychiatric illness has never been more

effective, access to that care is

fragmented, discontinuous, sporadic and

often totally unavailable, " a recent

American Psychiatric Assn. Task Force

concluded. " The numbers of individuals with

serious and persistent mental illness who

are incarcerated or homeless and without

support have reached epidemic proportions. "

 

Birkel has called it " a broken system of

care, " while the American Psychiatric

Assn.'s Appelbaum concedes that " we've

focused on new, more effective treatments,

but we've neglected to pay attention to put

the systems in place to implement them. "

 

To publicize the crisis in mental health,

Oaks took a page from his heroes' book by

staging a hunger strike in August. Holed up

in a small building in Pasadena, he and

several others challenged the American

Psychiatric Assn., the National Alliance of

the Mentally Ill and the U.S. surgeon

general to produce evidence that established

" the validity of schizophrenia, depression or

other major medical illnesses as biologically

based brain diseases " and that " any

psychotropic drug can correct a 'chemical

imbalance' attributed to a psychiatric

diagnosis. "

 

The alliance and the surgeon general did not

officially respond. Says Birkel: " I found the

challenge to be useless -- it's like proving

how many angels dance on the pin. "

 

The American Psychiatric Assn. did reply,

meeting personally with a delegation of

hunger strikers. In a statement released in

September, the association said that " it is

unfortunate that in the face of this

remarkable scientific and clinical progress,

a small number of individuals and groups

persist in questioning the reality and

clinical legitimacy of disorders that affect

the mind, brain and behavior. "

 

The association, however, also conceded that

" brain science has not advanced to the point

where scientists or clinicians can point to

readily discernible pathologic lesions or

genetic abnormalities that in and of

themselves serve as reliable or predictive

biomarkers of a given mental disorder or

mental disorders as a group . . . . Mental

disorders will likely be proven to represent

disorders of intercellular communication; or

of disrupted neural circuitry. "

 

To Oaks, who fasted for 12 days of the

22-day strike, that admission was no small

victory. " They acknowledged that they didn't

have the biological evidence [of mental

illness], so that's on the record, " he says.

" Now it's time for the APA to implement a far

more complex model [of mental illness] that

reflects the whole person and not just this

narrow, reductionist, biological model. "

 

--

 

David Davis last wrote for the magazine

about cowboy singer and actor Herb Jeffries.

 

http://www.latimes.com/

 

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