|
 David
Oaks offers a different perspective on what it's
like to take the antipsychotic drugs. An Oregon
resident, Oaks 15 years ago founded an organization
called Support Coalition International, dedicated
to "defending the human rights of people in the
psychiatric system." He says unlike recreational
drugs that increase the brain's dopamine levels,
neuroleptics are "anti-feel-good drugs."
Subjectively, the person taking them feels antsy --
"like your feet can't stop moving. But you're wiped
out. It's harder to think. The more you try to
think, the harder it is. You feel
lobotomized."
Oaks
speaks from personal experience. He says he had a
breakdown in the mid-1970s, while attending Harvard
on a Teamsters Union scholarship. The offspring of
a working-class Lithuanian-American family, he had
grown up on the South Side of Chicago and attended
a Jesuit, all-male college prep school. It "wasn't
the best for learning social skills, but…I
appreciated [the] academic commitment," he
has written in an oral history posted on Support
Coalition International's MindFreedom website. At
Harvard, he felt that he didn't fit in, and at
times he "ingested too much cannabis, to which I'm
highly sensitive. I stopped sleeping." When his
speech and behavior became erratic, Harvard
authorities took notice, and over the course of his
sophomore, junior, and senior years, Oaks was
admitted to psychiatric hospitals five
times.
He
says he did need support during those years. "For
whatever reason, I had been entering altered states
that were sometimes delightful, sometimes painful,
but that all had some validity to my life -- just
as dreams often do," he writes. "There were times
when I thought the CIA was making my teeth grow, or
that a UFO was appearing in my living room, or that
God was talking to me via the radio, or that the
performers on TV were directly talking to me. I
learned a lot from those states of
mind."
He
says "a whole bunch of psychiatrists" diagnosed him
as being schizophrenic. "I was told I would have to
stay on psychiatric drugs the rest of my life, like
a diabetic on insulin. I was told that I was
genetically flawed and had a permanently broken
brain." Angry and defiant, Oaks recalls receiving
his first neuroleptics by injection, against his
will, then being locked in a solitary-confinement
cell. "I experienced forced neuroleptics as
torture.… I could understand some overwhelmed
person choosing to take them, but for me it was
like taking a wrecking ball to the cathedral of
thoughts, feelings, and experiences that defined me
at that moment. It was incredibly intrusive. I
could feel how the chemical affected my vision, my
movement, my thoughts. I had terrible paroxysms of
my muscles.…"
With
his family's blessing, Oaks finally put the
psychiatric hospitals behind him. He wrote a senior
paper in college about his experience with an early
psychiatric protesters' group, the Mental Patients'
Liberation Front. In 1977, he graduated with honors
from Harvard and continued to work on causes such
as banning electroshock. He founded Support
Coalition International in
1987.
Today
he doesn't share the sanguine view of many
mainstream psychiatrists that the latest generation
of neuroleptics (the "atypicals") pose only minor
risks. Oaks remembers the psychiatric
establishment's reaction to the suggestion that the
older neuroleptics were causing a form of often
irreversible brain damage called tardive
dyskinesia. Characterized by repetitive,
involuntary, purposeless movements such as
grimacing, tongue protrusion, lip smacking and
pursing, rapid eye blinking, and other bizarre tics
and limb movements, this disorder was first named
in 1960. Numerous studies linked it to neuroleptic
usage throughout the 1960s, '70s, and early '80s.
Yet not until 1985 did the American Psychiatric
Association finally send out a letter warning its
members that patients taking the drugs were in
danger of getting the disorder. Oaks points out
that the risk of developing tardive dyskinesia
while taking conventional neuroleptics is now
estimated to be a cumulative 5 percent per year.
"So John Nash and I would have a 95 percent change
of getting it, had we stayed on the drugs," Oaks
says. "That's assuming we were still alive, but
there's a lot of ways that neuroleptics can kill
you."
Although
he acknowledges that tardive dyskinesia appears to
be a less common consequence of taking atypical
neuroleptics, Oaks points out that they've been on
the market for only a dozen or so years, so all
their long-term consequences are not known. Since
the newer drugs shut down a broader array of
neurotransmitters, "They're more of a smart bomb
for the mental and emotional receptors," he
believes, and "the mental and emotional changes may
be worse." Oaks says all neuroleptics are now
recognized to cause physical changes in the brain.
"The debate is now over. For years, we were saying
that and running into complete denial. But now we
have admission." Although defenders of the
atypicals respond that the changes in the brain's
structure wrought by the drugs are not dangerous,
Oaks categorizes those changes as
"damage."
Oaks
says many of the members of Support Coalition
International nonetheless continue to take
neuroleptics, and he can understand why. "Some
people take them because they weren't offered many
alternatives," he explains. "Usually the only one
is electroshock, which is being done more and
more." Once someone starts taking a neuroleptic, he
usually feels terrible whenever he tries to stop,
according to Oaks, who adds, "You can go crazier
than you ever have been in your life when you
quit." Finally, families and other social
institutions put intense pressure on schizophrenics
to stick with their pharmaceutical regime.
"Right
now the public thinks the drugs are a panacea," he
observes. "They think they 'lift the fog of
delusions and clear the mind.' It's like thinking
there's some magic dust for peace. Or a magic wand
that can make the violence in our society vanish."
Defenders of the drugs also "have a pretty strong
sound bite," Oaks concedes, whenever someone hurts
another person and avoids punishment by convincing
a judge that he or she was crazy. He says Support
Coalition International opposes the insanity
defense. "Our movement needs to take more
responsibility. If someone breaks a law, society
has the right to take away their
liberty."
On
the other hand, spiritual experiences aren't
supposed to be against the law, Oaks says, pointing
out that the First Amendment guarantees the right
to a free mind. He argues that this includes the
right to think in ways others might judge to be
delusional or abnormal. "Remember: they define a
delusion as an unshared belief that's implausible
on its face." By that criterion, many revolutionary
ideas have appeared delusional at first, Oaks
argues. "You could have said that about the first
person who questioned slavery. You can't have
social change unless you have people thinking
differently."
Oaks
also thinks American society has little tolerance
for altered states of consciousness. "You could
create religions 2000 years ago. But that's not
okay anymore." He's appalled by the fact that the
National Alliance for the Mentally Ill's "assertive
community treatment" program in some cases sends
overseers into patients' homes to make them take
medication against their will. "It's fascism!" Oaks
exclaims. "I would prefer a lobotomy to long-term
neuroleptics -- and I hate both of
them!"
Like
Oaks, Mosher has long been critical of all enforced
drugging. Mosher also sits on the board of Support
Coalition International and a few kindred
organizations, but he says that's about the extent
of his political activism. He fills his time with
other activities. Most weekdays, he joins an
eclectic group of older men for lunch at the
Pannikin in La Jolla. He also writes and spends a
lot of time on the Internet, where he maintains a
website that presents some of his heretical views
and explains his experience with
Soteria.
In
part because of that exposure, Mosher estimates he
gets an average of three requests a day from people
seeking help. Most have been diagnosed with
schizophrenia or have children with that diagnosis,
and they're looking for non-pharmaceutical forms of
treatment. Some think Soteria is still operating,
but most just want to find someone using similar
methods, "And I always have not much good
information to give them," Mosher laments. "There
just isn't much out there." Although he thinks many
psychiatrists "really don't believe the
mainstream," Mosher says the price of defying it is
very, very costly. "These days if you don't treat
somebody who's truly psychotic with neuroleptic
drugs, you can be sued for malpractice. It's that
bad."
Once
in a while, Mosher says, he personally takes on a
few boutique clients -- "young people who are crazy
and don't want to take psychiatric drugs and have
families who are supportive enough to take them
through it with me." Since he has no place where he
can refer such patients when they need to be with
someone sympathetic around the clock, he says he
has to be very selective. "I used to take patients
in my own house and let them sleep there and hang
out with me and my kids. That was an experience. My
kids still talk about it. They found it quite
interesting. But it takes a lot of energy to keep
up with someone who's crazy. And I'm not a
youngster anymore."
When
he does accept patients, Mosher says he often tells
them and their families that being psychotic
compares with having the common cold. "You feel
real bad for three or four days, then you feel not
so good for two weeks," he says. "Then if you just
sort of manage the supports right and try to
understand what's going on and don't mess with it
too much, things will happen and the person will
get better." But Mosher says this private practice
"is a very small-time endeavor, because I travel a
lot too."
He
receives invitations to give presentations in
Europe quite often. The first true replication of
Soteria opened in Bern, Switzerland, in 1984,
according to Mosher, and it's still operating
today. He describes at least ten Swedish facilities
as being "Soteria-like," as are a couple of others
in Germany. "The whole concept is extremely popular
there," Mosher says. "They think it's wonderful."
He speculates this may be because "there's less
homogeneity" in Europe. There's also "less
drug-company pressure," he asserts. "They all have
national health care. And they have more of a
culture of not always going with fashion. I don't
know."
In
the United States, however, Mosher confesses to
feeling hopeless about the future of anyone
misfortunate enough to receive the label he so
hates. When asked what words he prefers instead of
"schizophrenic" or "mentally ill," Mosher responds,
"Why not call it a severe personal emotional
crisis? Or a severe psychological crisis? Why not
call it disturbed and disturbing behavior -- a
pretty good description, since that's how it looks
from the outside. There are lots of ways of
recognizing that these folks are acting in ways
which are unconventional -- and that still
recognize they're in severe psychological
pain."
"Blame"
is also the wrong word to apply to these people's
families, Mosher insists. "With rare exceptions, I
think parents do their best. They try. But there
are a lot of ways in which they can go astray. One
way is if the parents themselves were raised in
homes where they didn't learn to think straight.
They grew up, and they can think straight enough to
get along, go to school, whatever." But when a
person with this kind of communication style
marries someone from a similar one, "You can get
two parents who are just loose as a goose," Mosher
says. Add some additional trauma, and the result
may be a psychological breakdown, he
believes.
"But
it's not that the parents are consciously
trying to hurt these children," he stresses. He
thinks that with the proper therapy, such people
could be taught to "think a bit more clearly and
communicate better. There are things that could be
done. But we're so busy with drugs that you can't
find a nickel being spent on that kind of
research." He adds that "These days, for the very
first time, schizophrenia has become a source of
enormous corporate profits. Schizophrenics were
somewhat profitable ever since the mid-'50s, though
nothing like today. The sales of the antipsychotic
drugs were running about $600 million a year for
years until the '90s, when the new atypical drugs
arrived. Since then, the bill for antipsychotics
has grown to more than $4 billion a year. That's a
lot of money."
Today
Mosher calls himself "a lapsed psychiatrist"
because he thinks the biological explanations of
psychotic behavior embraced by so many of his
colleagues resemble a religion
more than they do a body of science. From his
perspective as a heretic, he reflects, "We are all
afraid of going crazy. And as long as we have
someone out there who can sort of do that job for
us, it's not our burden." He thinks it's comforting
to believe schizophrenics act the way they do
because their brains are diseased. Biological
differences "make them different from us
fundamentally," he says. "They're sort of a
slightly different race than we are." Mosher thinks
it's all "a way of carefully saying, 'These people
are really different. And therefore we have
the right to do whatever we goddamn please with
them.' "
[End]
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