Mental health: Out of the cuckoo’s nest
Source: The Guardian, UK
A radical US advocate for psychiatric patients’ rights brings to the UK his first-hand message that a diagnosis of mental illness is not a life sentence.
Daniel Fisher was a young, idealistic man in his mid-20s, enjoying life in a hippy commune, when he was hospitalised for four months in 1970 and diagnosed with schizophrenia. During that stay in hospital – his second of three on psychiatric wards – friends came to visit with a copy of One Flew Over the Cuckoo’s Nest, the bestselling Ken Kesey novel – later to become an Oscar-winning movie – about life on an Oregon psychiatric ward. He recalls fondly: “They said: ‘Man, this is crazy. You gotta get out of here.’ It was just a different era. We are in a much more conformist era.”
Fisher, a prominent psychiatrist who is advising the Obama administration on mental health issues, has been on a personal mission for two decades to change the way wider society understands and reacts to mental illness. An advocate of the “recovery model” – which posits that a diagnosis of mental illness is not for life, and that people can recover completely – Fisher is an outspoken and controversial figure in the US, campaigning vigorously for the rights of people diagnosed with a mental illness. Much of what he does is rooted in his own experience. “Human rights doesn’t even begin to grasp it,” he says. “It goes much deeper than that.”
Fisher is in London to give a talk at today’s national conference of mental health charity Together, exploring the issue of personalised care in mental health and the degree to which people who use services should have a greater say in the kind of assistance and treatment they receive. However, his agenda is much more radical than improving access to care or giving individuals more say. His ambitious ideal is a “total transformation” of mental health care.
Talking to him, it is clear that he believes mental health activists in the UK could learn a thing or two from his experiences in the US. There is something unique, he suggests, about the individualism and self-help philosophy that permeates American culture, making it particularly conducive to advocacy of the rights of patients – or consumers, as they are commonly called in the US. “I know I shouldn’t generalise, but it is a bit old world, new world,” he says. “The culture we live in here that people [outside the US] don’t understand is that we are very self-help and peer-support oriented.” Despite all the progressive changes to mental health care in Britain over the years – from the closure of large asylums to moves toward a recovery model – Fisher contends that activists in the UK have been too “tame”.
He has always been attracted to progressive ideas, even if it meant calling into question many of the tenets of his profession: “I knew I wanted to go into psychiatry, but I also knew I wanted to maintain contact with people who had a more radical perspective or more progressive perspective.”
In the 1970s, he belonged to an anti-establishment mental health activist group, the Mental Patient Liberation Front, and was part of the early “survivor” movement protesting against “coercion” and incarceration of people in asylums. But it would be much later before he began to set his own agenda. “I started thinking maybe I should be trying to do something more than trying to be a good psychiatrist who is community oriented,” he says.
It was in 1993 that Fisher helped found the Massachusetts-based National Empowerment Centre (NEC), a not-for-profit organisation of which he is executive director. By doing so, he precipitated an ideological clash with the US mental health establishment. The NEC offers support and emergency “respite” to people who don’t want to hospitalised, but it has also fostered a radical campaigning agenda. According to Fisher, it was set up to get the message across that mental illness need not be a life sentence – that it is possible, as he did, to make a full recovery – as well as to challenge orthodoxies that favoured hospitalisation and medication. “I’m not opposed to medication, but the overuse of it is very disturbing,” he says.
Fisher claims that the advocacy movement in which he and his NEC colleagues are key players has become a force to be reckoned with. But his views – he contends that mental health care could be transformed if psychiatrists were less involved and “peer support” from non-professionals was widespread – have met with scepticism and even derision by some members of his profession.
In her 2000 book, PC, MD: How Political Correctness is Corrupting Medicine, Washington-based psychiatrist Sally Satel singled out Fisher and the NEC as an example of patients’ rights running amok. Fisher has been excoriated by other psychiatrists as giving people with serious mental illnesses, including schizophrenia, false hope of recovery and misleading desperate families and patients.
Fisher dismisses such criticism, but it’s not difficult to see why his approach attracts so much attention. Not only does he reject the notion that people cannot recover from serious mental illnesses, he rejects the term mental illness. “We don’t believe that description is helpful. In fact, we think it’s harmful – not only in terms of stigma and discrimination, but also in terms of recovery, because it focuses the person’s own attention and the people around them on the wrong issues. It focuses on: ‘You take this pill and be compliant, and you listen to the doctors.'”
What matters, he says, is the kind of support people get when they need it most. “It’s unfortunate that the first message people hear when they are in acute distress is: ‘You have incurable brain disease.’ That takes a long time to undo. The first thing that people hear should be: ‘Yeah, you’re in distress, but other people have been in that [state] and there’s hope, and you can heal.’ If people heard that, many more would recover. Medicine is a tool, but it’s not the primary tool.”
The sheer size and diversity of the US has got in the way of creating a “truly national movement”, Fisher concedes. Individual states can have wildly divergent social care provision and funding options. It’s a challenge, he says, but not one that can’t be overcome.
However, the election of Barack Obama this year gave the NEC and other reformist advocacy groups a boost. The Bush administration was antagonistic, Fisher says, but the new government has been far more open to fresh ideas.
Fisher began making contacts among disability rights campaigners and looking for ways to get his points across on mental health. The campaign had appointed a disability representative early on, and he saw this as a promising sign. “I’d sort of gotten known as being involved with the campaign and I’d gotten to know some of the people.” A cross-disability alliance evolved out of the campaign, and Fisher, as a member of the steering committee of the recently formed National Coalition of Mental Health Consumer/Survivor Organisations, has since been involved in meetings with administration officials.
In the first instance, he has focused on making recommendations for the US government’s vast Medicaid programme, which provides health and social care for some of the country’s poorest people, and suggesting it could be directed more toward “peer support” initiatives.
Fisher seems unconcerned by any suggestion that being deeply involved with government might take the edge of his anti-establishment credentials or temper his ambitions. He sees no problem with making some short-term compromises. If he can’t immediately reduce the degree to which society relies on psychiatrists, he can at least set about building up some of the alternatives, including peer support. “Our whole movement is about people running their own lives,” he says. “If I had started as a realist, I wouldn’t be doing what I’m doing.”
Now 66, Fisher still oozes the idealism, optimism and energy of a 20-year-old, and his nonconformist tendencies are very much in evidence. He comes back to the perspective that being on both sides of the psychiatric fence has given him. “Even for a very well-meaning professional or person who doesn’t have a disability, it’s very hard for them to grasp this movement and to grasp the enormous need for deep-seated change,” he says.
What does he want to achieve from his visit to the UK? Hope is the word he aims to spread, he says. “This movement started in the US and it’s just starting to filter in to other countries. It’s kind of exciting to know that you are part of something that’s starting to move.”
More on the National Empowerment Centre at www.power2u.org