Rights advocacy groups have helped minorities beat back discrimination, women gain the right to vote, and the handicapped win access to public spaces. Now a group called MindFreedom International is working to preserve perhaps one of the most fundamental human rights: the right to think for oneself.
A coalition of more than 100 groups in 14 countries, MindFreedom was formed in 1988 to speak out against human rights violations in the mental health system, such as restraints, involuntary electroshock therapy, and forced medication. Many of its founders and members call themselves survivors of the system, and their experiences show that, for some, 'treatment' isn't a road to recovery but a highway to hell. At one rally in Washington, D.C., a supporter toted a banner that read, 'Bet your ass we're paranoid.'
Now, as scientists refine ways to alter the human brain -- and, concomitantly, thoughts and behavior -- MindFreedom is poised to enter a new skirmish in the struggle to uphold personal freedom.
Lately, the group has been campaigning against drug implants that are surgically inserted under the skin to release antipsychotic medicine slowly, over weeks or months. It's still good old drug therapy, not an electronic implant, but the method takes control away from the patient and gives it to the doctors. In this way, MindFreedom contends, it's another step toward curtailing the rights of some of society's most marginal members, the mentally ill. And as far as MindFreedom director David Oaks is concerned, it will also result in more invasive and heavy-handed methods such as electronic implants controlled by doctors.
'We're opposed to all these techniques because they're inherently intrusive and irreversible, and they give doctors a lot of control,' says Oaks. 'It's like throwing gas on a fire.'
Apart from the rights implications of the new brain science, Oaks contends that many of the most touted treatment methods are based on what is still a crude understanding of the brain.
'The most complex thing on earth is the human mind, and we're using monkey wrenches and throwing switches to see what happens,' he says. 'All of these newer techniques, which are really extensions of the old psychosurgery, are based on an inaccurate view of the mind, a mechanistic, reductionist paradigm. They reduce the brain to a machine -- and that ain't how it works.'
Oaks, who was diagnosed as psychotic and forced to take medication in the 1970s, contends that a more holistic model encompassing mind, body, spirit, and environment can lead to better treatment results and even full recovery for psychiatric patients. 'Major change is often what's needed, and you can't buy and sell that stuff,' he says.
In the United States, discussion of the ethical aspects of brain science has largely been relegated to groups like MindFreedom and the occasional academic or professional conference. But Europe is having a broader dialogue. Last year 126 citizens from nine countries were tapped to participate in a series of conversations, dubbed 'Meeting of the Minds,' that studied the issue with the help of researchers, ethicists, stakeholders, and policy makers. It was considered to be the largest public consultation on science, and the first such Europe-wide effort.
The panel, which was coordinated by the Belgium-based King Baudouin Foundation, presented its recommendations to the European parliament in January. Many of them focused on the potential misuses of brain science innovations and encouraged safeguards against rights abuses.
Oaks hopes the United States has a similarly wide-ranging public discussion, and that it includes those who have been harmed by the mental health system. 'That's whose voice is often not at the table, and we need to get it out there,' he says.