by David Adam
Debate became so heated that the US Supreme Court weighed in with a series of announcements on whether ‘government programs of thought control’ were unconstitutional because they breached the First Amendment’s protection of free speech. The court concluded that the state ‘cannot constitutionally premise legislation on the desirability of controlling a private person’s thoughts’. In a free society, ‘one’s beliefs should be shaped by his mind and his conscience rather than coerced by the state’.
Judges in Michigan used these grounds to halt a 1973 scientific experiment into anger and sexuality. A criminal sexual psychopath committed to a state mental hospital was to have electrodes placed into his brain to probe the reasons for his behaviour. The research team hoped to identify, stimulate and then destroy the brain regions responsible for the criminal’s thoughts of sexual violence. The man consented to the experiment on his brain, which was approved by a scientific review committee and a human rights review committee. The court blocked it because it would contravene the convict’s rights to freely generate ideas, even those of brutal rape.
In the same year, a Washington, DC, psychiatrist, Peter Breggin, published an influential article in the Congressional Record that said Delgado and other scientists who researched brain stimulation were as bad as the now-reviled lobotomists. Those whose thoughts deviated from the norm would be ‘surgically mutilated’, he said. Congress launched an investigation into psychosurgery, and Delgado returned to Spain.
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Just like stereotactic surgery, the modern use of deep brain stimulation for OCD has its critics, who argue that experimental treatments for mental illness should be regulated more strictly and that more research is needed to check if they are safe and effective. History, once again, shows that these critics shouldn’t hold their breath, or too much hope that stricter regulation will follow.
The National Commission investigation of psychosurgery set up after the badgering of Congress by Peter Breggin reported its findings in 1976. Despite misgivings, the report was favourable. The government, it suggested, should encourage further research. Kenneth Ryan, the chairman of the commission, told Science magazine at the time:
We looked at the data and saw they did not support our prejudices. I, for one, did not expect to come out in favour of psychosurgery. But we saw that some very sick people had been helped by it and that it did not destroy their intelligence or rob them of feelings. Their marriages were intact. They were able to work. The operation shouldn’t be banned.
Ryan did not endorse Walter Freeman’s technique of pre-frontal lobotomy, but gave a cautious green light to the more selective stereotactic surgery such as cingulotomy. Still, the commission was nervous about possible side effects and potential abuse of psychosurgery. If the research was to continue, it said, the United States must make more effort to ensure it was safe. No patient should have psychosurgery, the commission said, unless details of their presenting symptoms, preoperative diagnosis, past medical and social history and – crucially – the outcome of their operation were recorded and stored in a new national registry. Psychosurgery should become a reportable operation, not something that could be done without public and professional scrutiny.
It never happened. Patients still wait for anyone involved to set up such a registry. The calls for caution have, once again, gone unheeded. The surgery, for OCD and other mental disorders, continues anyway. Long live lobotomy.
FOURTEEN
Politics and prejudice
The UK parliamentary record Hansard notes every word spoken in the House of Commons and the House of Lords since 1909. Winston Churchill’s battles as first lord of the admiralty to convert the Royal Navy from coal to oil in the years before the First World War are in there. So is the famous put-down from Labour politician Denis Healey that to be attacked in a speech by Conservative rival Geoffrey Howe was to be savaged by a dead sheep. The compilers of Hansard have seen it all. But if they can still be surprised by a political turn of phrase, then Charles Walker probably managed it. In the summer of 2012, Walker, the Conservative MP for the Hertfordshire town of Broxbourne, told the House of Commons he suffered from OCD and had done so for thirty-one years. During a debate on mental health, Walker announced to the centre of British democracy that he was a ‘practising fruitcake’.
He described his compulsions to count and turn off lights four times, and his fears of contamination – he must leave biscuit wrappers throughout the house because of anxiety around bins. He touched also on the darker side of OCD – the terror of thoughts he cannot control. He said:
One is constantly striking deals with oneself. Sometimes these are quite ridiculous and on some occasions they can be rather depressing and serious. I have been pretty healthy for five years but just when you let your guard down this aggressive friend comes and smacks you right in the face. I was on holiday recently and I took a beautiful photograph of my son carrying a fishing rod. There was my beautiful son carrying a fishing rod, I was glowing with pride and then the voice started, ‘If you don’t get rid of that photograph, your child will die.’ You fight those voices for a couple or three hours and you know that you really should not give in to them because they should not be there and it ain’t going to happen, but in the end, you are not going to risk your child, so one gives in to the voices and then feels pretty miserable about life.
Following his speech, Walker received deserved plaudits for his honesty and his bravery, including from the prime minister. People wrote to thank him for raising the issue in such a public way. But he is not the first MP to talk about his obsessions and compulsions. Gerald Kaufman, the former Labour government minister, received a different reception.
At the height of a 2009 scandal over abuse of parliamentary expenses, Kaufman was ridiculed when he blamed (self-diagnosed) OCD for his decision to claim back £220 of taxpayers’ money for the purchase of two crystal grapefruit bowls for his London home. He had identical bowls at his constituency home in Manchester, Kaufman said, and his OCD demanded that he repeat the same breakfast each morning: half a grapefruit, a bowl of muesli with semi-skimmed milk and a cup of coffee with a Rich Tea biscuit. Given what we’ve seen of OCD in this book, we shouldn’t jump to conclusions. It’s possible that Kaufman’s thoughts did demand superior crockery. But it’s much less clear why he thought the rest of us should pay for it.
Part of the reason that Charles Walker wanted to speak out, he said, was to tackle prejudice. That’s a goal that lots of people credited me with, when they found out I was writing this story of OCD. They assumed I wanted to raise awareness. I didn’t, not at the beginning at least. I hadn’t faced prejudice, because I had kept my OCD to myself. Perhaps I feared prejudice and that’s why I kept it a secret, but I don’t think it was that either. I just didn’t want people to know I was a practising fruitcake. I didn’t want to accept it myself.
The reason it is important to raise awareness, I realize now, is more fundamental. The reality of OCD is scary for all involved. But it’s not dangerous. Yet it can be, especially for people who believe the condition is nothing more serious than a need to wash hands. That’s why it’s necessary to show and talk about the reality of what OCD is and what it is not. That’s why there’s no bar of soap on the cover of this book.
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On a rainy day in Wales in November 2012, the charity OCD-UK organized a series of talks and discussions at Cardiff University. On the bill were numerous experts – academic psychologists, psychiatrists and former sufferers turned advocates. And in the audience were people from across the UK with OCD. A room full of two hundred people with OCD sounds like the set up to a joke, the punch line of which would be something like ‘and you should have seen the queue for the sink’. But for the people who attended it was a serious matter.
Many had brought along friends and family for support. Teenage girls were there with a best friend. Men in their twenties were accompanied by both parents. I heard one husband tell his wife, in the queue for th
eir lunch, that only now did he understand her. Many of the attendees were probably confronting their OCD for the first time. Certainly some were speaking in public about it for the first time. Lots were in tears, while others sat in silence and shook their heads gently or closed their eyes as they listened.
Yvette sat a few rows behind me, towards the back. A few people craned their necks to look as she indicated she wished to speak and asked for the microphone. By the time she handed it back, all eyes were on her. Yvette wasn’t keen to cooperate for this book, so what appears here is what she said at the open meeting, which was broadcast on the Internet, and no more.
Yvette (not her real name) was a secondary school teacher. She suffered from OCD and was visited by a particular type of intrusive thought. When Yvette drove her car, she could not shake the feeling that she had been in an accident. She worried that she might have knocked someone down as she drove through dark country lanes at night.
This is a fairly common obsession. The driver finds their thoughts are not relieved by a quick glance in the rear-view mirror, so sometimes they stop and reverse or circle around to check. They might get out and check their car repeatedly for damage, paint or blood. Some ring hospitals and ask if any victims of road traffic accidents have been brought in. One night, convinced she had hit someone yet equally certain that she hadn’t, Yvette called and checked with the local police. No, the confused officer on the phone replied, there had been no such accident. But, why do you ask? Who are you? The police reported Yvette’s enquiry to her school’s headmaster, who then suspended her for nine weeks, while the school tried to decide if Yvette was a danger to the children. She had worked as a teacher for nine years. The kids she taught, Yvette said, understood her condition better than her colleagues.
Of course, those who work with children must be checked out. And Yvette was later able to return to work. But others are not so fortunate. Mental health advocates regularly deal with cases of people who have been separated from their families because a medical professional became alarmed when they reported harmless obsessions. Even when the facts of OCD are made clear, and the individual reunited with their family, the problems and the injustice can continue. If they go for a job that demands a criminal records check, and many do – in counselling or charities, for example – then the question of their mental health is often raised. In a section of the records check that asks for other relevant information, chief constables have the discretion to write: ‘We are aware that this person was detained for a mental health problem at this institution. We are not aware that they are a threat to adults or children.’ Would you give them a job?
Charles Walker raised this issue in his speech to Parliament. ‘I am afraid that in our ultra risk-averse world, that is a career death sentence for those people.’ In September 2012, after pressure from campaigners, the UK government did tweak the emphasis of the records check with respect to mental illness. Police are now asked only to report incidents they believe are relevant. The changes introduced an appeals procedure too. It remains to be seen how effective they will be.
A more fundamental way to sort this out is increased awareness. At first I thought awareness was a worthy sentiment but too vague and nebulous to address directly, but I was wrong. The more that OCD is cemented in the public consciousness as a behavioural tic, the more times that a Hollywood celebrity who likes to keep their house tidy describes themselves as having OCD, the more times companies cash in on the apparent quirks of the condition as a gimmick, then the more times people like Yvette suffer. Some National Health Service trusts in the UK demand their psychiatrists refer any parent who reports intrusive thoughts about harming children to child protection authorities.* One impact of that can only be that more parents with OCD fail to seek help, and so continue to believe they are a danger to their child when they are not.
We’re getting there with other mental illnesses. Schizophrenia is no longer acceptable shorthand for a split personality – its use in that way was banned by the style guide at The Guardian, which told writers how to use language. People with autism are not expected to memorize and recall the order of three combined packets of cards. Some who suffer from depression may still be told to pull themselves together, but hopefully fewer than a decade or so ago. OCD is perhaps a more serious challenge because fewer people regard it as a serious illness.
The US television show Monk features a policeman with OCD – the defective detective – whose obsessive attention to detail gives him superior ability to solve crimes, even though he regularly has to interrupt interviews or stop pursuits of villains to touch and arrange objects. Jack Nicholson won an Oscar for his quirky and humorous portrayal of a misanthropic obsessive-compulsive in the film As Good as It Gets, who skipped down the street with a grin on his face to avoid cracks in the pavement.
Fed up with having to watch Nicholson play OCD for laughs, the Welsh actor and writer Ian Puleston-Davies co-wrote what he hoped would be a more realistic portrayal. Called Dirty Filthy Love, and with Michael Sheen in the lead role as an architect with both OCD and Tourette’s, the 2004 ITV film won a Royal Television Society award the following year. In the two hours after it was screened, OCD-UK received 2,000 phone calls.
Puleston-Davies, who as I write this stars in the long-running British soap opera Coronation Street, has severe OCD and has described how intrusive thoughts can join him on stage – forcing him to think about when he last went to the toilet rather than his lines in a play. He based the script of Dirty Filthy Love on his own experiences. But even he admits that some scenes are unrealistic, particularly those when the lead character goes to a self-help group. Puleston-Davies had originally written the group as they appear – like a class sat around to learn how to speak Spanish. This was too dull for the producers. The final screened version, to his despair, looked more like something from One Flew Over the Cuckoo’s Nest – all white clinical walls and intense oddballs who rock in their chairs.
OCD gets a raw deal in the media, especially film and television. It’s pretty clear why: obsessive thoughts are internal and hard to film, so the focus tends to fall on the compulsions. The distress is invisible, but the checks, the hand-washing and the lining up of shirts in a wardrobe can appear sinister and funny, sometimes both at the same time.
In 2009, Paul Cefalu, an English professor at Lafayette College in Pennsylvania, investigated this media misrepresentation further. He published an article in PMLA, the house journal of the Modern Language Association of America, called ‘What’s So Funny About Obsessive-Compulsive Disorder?’ ‘What distinguishes representations of OCD from depictions of other mental disorders’, he wrote, ‘is the frequency with which OCD is treated with humour and levity.’
Earlier incarnations of obsession were portrayed – by Edgar Allan Poe and others – in melodrama, tragedies and Gothic literature, Cefalu said. Yet more recent books and films suggest that sufferers of OCD ‘can always be counted on to make us laugh’. The reason, and the answer to the question in the title of his essay, he decided, is irony. ‘Not only is there something fundamentally ironic about the extent to which obsessives with OCD concentrate on tasks that they believe ridiculous, but compulsions, usually orchestrated to relieve underlying obsessions, tend to worsen the motivating obsession.’
OCD is funny, he says, because it is based on incongruity, and incongruity is funny. The action makes no sense, but even after it acknowledges its own senselessness, it carries on regardless. That makes OCD postmodern irony; slapstick misery.
Funny or not, some psychologists have suggested that peer pressure and societal expectations are crucial to the perception of obsession. People with OCD, they suggest, might experience less distress if they live in cultures where commonplace superstition makes their mental and behavioural rituals more acceptable. (If everyone around you touches wood for luck, you might feel less bothered about having to touch it compulsively to see off intrusive thoughts.)
Such acceptable and unacceptable cultural
context for obsessions has been highlighted by the US academic Lennard Davis to explain the rise in the visibility and apparent prevalence of clinical OCD in the last few decades. In his 2008 book Obsession: A History, Davis writes:
In the requirement that the behaviours produce marked distress in the person, how one arrives at distress is crucial. The same behaviour in different cultures might produce different results. In other words, it takes a community, a culture, a family to make an obsessive. If your behaviour, say the meticulous lining up of objects, is seen as an oddity, you will be distressed that you do it. If it is seen as the useful quality of a master bricklayer, then you will not be distressed.
Davis, a professor in the Departments of English, Disability and Human Development and Medical Education at the University of Chicago, argues that obsession – and OCD – is better framed as a disease entity, a temporary and fluid definition that shifts with culture and history; sometimes useful and valued, but sometimes malevolent and feared. Dickens’s huge output, he says, shows he was an obsessive writer. We demand that lovers are infatuated with each other in films. We respond to driven athletes and single-minded musicians.
Plenty of psychologists and psychiatrists have taken issue with his argument already. It misleads to bundle all these different types of obsessive behaviour together, they say. It conflates the general definition of obsession and the clinical term, and in doing so it dilutes the significance of the latter. Here’s my objection: when Davis writes that the distress caused by repetitive behaviour, to line up objects say, is subjective, he misses a crucial point. In my experience, and that of most people with OCD I’ve met, the compulsive behaviour does not cause distress, it lessens it. That is why we do it. As the character Mark Renton in Irvine Welsh’s 1994 novel Trainspotting puts it to explain why he and his friends take heroin: it feels good. ‘Otherwise we wouldn’t do it. After all, we’re not fucking stupid. At least, we’re not that fucking stupid.’