Thalidomide 50 Years On: Justice Has Never Been Done / Telegraph Magazine
'No limbs, no limits,’ Lorraine Mercer chuckles, and for 54 years this remarkable woman has lived by that motto.
She was a thalidomide baby, born without arms or legs, just tiny hands and feet attached like flippers to her torso. But she enters dressage competitions, controlling the horse from a modified buggy, and has trophies to prove it. She has completed three onemile swims for charity, each taking three hours or more. She writes, paints and makes lace with her mouth. She won an MBE for visiting patients in hospital. She carried the 2012 Olympic torch through Crowborough in Sussex, delighting the crowds by performing pirouettes in what she calls her motorised chariot. ‘That was a fantastic day,’ she says.
But Mercer’s body is beginning to fail her. Five decades of distortions and contortions are taking their toll. Her back is seizing up. Her jaw is weakening. She needs oxygen to revive her. ‘I feel like I’m 80 years old sometimes,’ she says, and soon she will start losing her cherished independence. She is planning to move from her tiny flat to a bungalow in Haywards Heath because she needs an extra bedroom for a carer to sleep in, and a bigger bathroom so a helper can be present.
The move will cost hundreds of thousands of pounds. The bungalow will need electric doors and windows, a remotecontrolled toilet and bath with hoists, and every light switch, surface and cupboard set at precisely the right height. There will have to be room for her four motorised chariots (two for inside, two for outside), and secure parking for her specially adapted Ford Transit van.
Like Mercer, most of Britain’s 468 surviving thalidomiders are suffering musculoskeletal deterioration and chronic pain as they age. Their spines and joints are wearing out after decades of performing mundane tasks with their teeth, toes or stumpy arms. ‘They’re degrading fast… They’re getting the type of damage you would expect to see in people 30 years older,’ says Martin Johnson, a former RAF squadron leader who was until recently director of the Thalidomide Trust. Worse, these proud thalidomiders (never call them ‘victims’) face the loss of their independence, and hate the idea of burdening their children as they once burdened their parents.
‘I’m horrified at the idea,’ says Mikey Argy, a single mother of two children. She has foreshortened arms and suffers both from acute back pain after a lifetime of bending, and from weakening hands that can no longer carry pans or manage zips and buttons. ‘Not to be independent will be absolutely devastating,’ says Tom Yendell, a professional artist though he has no arms. He paints, writes, eats, drives and dresses with his feet, but his knees are now giving way after so much unnatural twisting.
In short, they need much more money to pay for extra help, but they are no longer looking to the British government for that. They are turning their attention to Germany, the source of thalidomide. Nor do they just want money. They seek justice too.
They want Chemie Grünenthal, the drug’s inventors, finally to admit responsibility for what they call the world’s most devastating manmade disaster apart from war – worse than 9/11, the Titanic, Bhopal or Chernobyl. They want reparations from the federal government for allegedly shielding Grünenthal from the horrific consequences of a drug developed by Nazis.
‘What drives them now is a sense of injustice,’ says Sir Harold Evans, the former Sunday Times editor who has spent much of his adult life campaigning for the thalidomiders. Johnson says, ‘They collectively and passionately want justice brought to Grünenthal. They identify the company as the origin of their troubles and believe strongly that it has not been brought to book.’
The campaigners have two new weapons in their armoury. They have recently obtained documents that suggest the German government conspired to halt Grünenthal’s trial for criminal negligence in 1970, thereby suppressing the evidence with which thousands of thalidomiders in other countries might have secured just settlements. In addition, a documentary to be released later this month will tell the story of the thalidomide scandal to younger generations who might otherwise regard it as ancient history, not a continuing source of shame. ‘It will bring this worst of crimes to public attention once more,’ Johnson says.
The documentary, Attacking the Devil, has been made by Jacqui and David Morris, a sisterandbrother team whose previous awardwinning film was about the photojournalist Don McCullin. This project began as a documentary primarily about Evans, McCullin’s editor, but as the Morrises dug deeper their focus switched to his key role in the thalidomide scandal. ‘It exemplified Harry’s way of working,’ David says. ‘It’s such an exciting story. It has ups and down, good versus evil, and goes on over decades. If it helps thalidomiders all over the world win compensation that would be great.’
Grünenthal, a small family firm based in the pretty Rhineland town of Stolberg, put thalidomide on the market under the brand name Contergan in 1957, when Germany had few regulations governing drugs. The company was run by Hermann Wirtz, a former Nazi. It employed several former Nazi scientists including the infamous Otto Ambros, the socalled ‘devil’s chemist’ who was instrumental in developing the nerve gas sarin before the Second World War, ran a work camp at Auschwitz, and was imprisoned for war crimes. Circumstantial evidence suggests the drug may have been developed by Hitler’s regime as an antidote to nerve gas and tested on concentrationcamp inmates.
Grünenthal promoted thalidomide as a ‘fully harmless’ and ‘completely safe’ cure for morning sickness, though it had never tested the drug on pregnant animals, let alone women. The ‘wonder drug’ was an instant success. It was prescribed to hundreds of thousands of pregnant women in nearly 50 countries (America’s Food and Drug Administration was one of the few regulatory bodies that rejected it). But over the next four years at least 20,000 babies were born with extreme deformities – which day of her pregnancy a mother took the pill determined the nature of the deformity ‘with the precision of the sniper’s rifle’, Johnson says.
Many times that number died in the womb or were stillborn. Grünenthal finally, reluctantly, took the drug off the market in November 1961, having ignored mounting evidence of its catastrophic effects and having sought to silence or discredit its critics. In Britain thalidomide was approved by the NHS and marketed as Distaval by Distillers, the drinks company that produced brands such as Gordon’s Gin, Johnnie Walker and Pimm’s. Bizarrely, Distillers had ventured into pharmaceuticals after Aldous Huxley, author of Brave New World, predicted that ‘happiness pills’ would supersede alcohol.
Two thousand thalidomide babies were born in this country. Many were so deformed that they were ‘not allowed to live’ – either suffocated by doctors or left in a cold room, Johnson says in the documentary, the rights to which have been bought by the film producers Harvey and Bob Weinstein.
One father described his daughter as ‘a torso with little flowers where the arms and legs should be’. Grainy black and white footage shows a mother recalling how she was told to forget her baby, go home and have another. ‘We were all written off,’ says Kevin Donnelly, the son of a northern tugboat worker. He was born with no limbs. Half were dead within a year.
Sixtytwo families sued Distillers, which meant the press was gagged by the draconian sub judice rules of that era. Enoch Powell, the health minister, refused to hold a public inquiry, his senior medical adviser having been briefed by Distillers. Parents were left to raise armless or legless children, some severely brain damaged or with defective organs, with minimal support.
Marjorie Wallace, a journalist who spent months with the families, remembers cafes, shops and beaches emptying when they entered. ‘They were being shunned by society. Everyone was afraid of these deformities,’ she says. Readers protested when Evans, as editor of The Northern Echo, published photographs of the children. Many parents abandoned their children to institutional care – Wallace remembers visiting a thalidomider in a nursing home who listed his solicitor as his next of kin.
As many as half the marriages of parents of thalidomiders broke up, with husbands walking out saying the deformed children had nothing to do with them. Mothers were consumed with guilt, and at least three committed suicide.
Eventually, in 1968, Distillers gave the 62 families 40 per cent of what they would have received had they won a negligence case in court. Evans, who had by then moved to The Sunday Times, dismissed that as ‘miserably inadequate’, but it alerted other parents to the possibility of compensation, and 369 of them launched a new suit. In 1971 Distillers offered them a paltry £3.3 million – roughly £8,000 per family – provided they all accepted it. Most were delighted, having survived a decade with nothing. But five said no, among them a London art dealer named David Mason who was determined to get £20 million. Other parents denounced him for holding out because they could not be paid.
Distillers upped the pressure. It threatened to withdraw the offer. It encouraged a successful application to have Mason’s daughter, Louise, made a ward of court because he was neglecting her interests. ‘Bleak House is not in it,’ Evans remarks in the film.
Mason regained guardianship of Louise on appeal only because an American lawyer contacted him to say a client had won $2.7 million in a thalidomide case. Mason flew to the US, got the papers and presented them to the judge, Lord Denning, the next day as proof that thalidomide cases could succeed.
The Sunday Times had meanwhile obtained thousands of documents showing how Grünenthal and Distillers had failed to test the drug adequately and ignored warnings about its dangers, but because of the ongoing legal battle it could not publish them without being in contempt of court.
Finally, in 1972, Evans found a way to circumvent what he called ‘the most restrictive press laws in Western democracy’. His paper would focus on the moral, not legal, issues. It launched its campaign with a front page headlined ‘Our thalidomide children: a cause for national shame’, and followed up with Wallace’s heartbreaking reports of their plight.
It worked. That November Jack Ashley, the Labour MP who chaired the allparty disability group, forced a parliamentary debate on what he called a great national tragedy. ‘What kind of an adolescence will a 10yearold boy look forward to when he has no arms, no legs and is only two foot tall? That is the height of two whisky bottles placed on top of each other,’ he said. ‘How can an 11yearold girl look forward to laughing and loving when she has no hand to be held and no legs to dance on?’
Other media outlets began to report on the long-neglected thalidomide children, and the public was appalled. Evans received thousands of letters of support. Distillers’ shareholders started to protest. Posters denouncing Distillers appeared on the walls of British cities. Mason helped organise an international boycott of its products. Flying to New York, he followed the drinks trolley down the aisle and urged passengers not to consume any Distillers’ product – none did. Distillers’ share prices plunged, and in 1973 the company was finally compelled to offer the £20 million that Mason had demanded.
It was a great victory, but the attorney general still banned the The Sunday Times from revealing the facts on which the campaign was based – how Grünenthal and Distillers had managed to put such a lethal drug on the market. The newspaper successfully appealed against that ban. The House of Lords overturned that verdict. The newspaper went to the European Court of Human Rights (ECHR) in Strasbourg and won by two votes in 1979. After a decade of campaigning, its exposé of the two companies’ negligence and unscrupulous marketing was finally published under the headline ‘The story they suppressed: thalidomide’.
The ECHR’s landmark ruling unshackled what Evans called Britain’s ‘half free press’ and bolstered the public’s right to know. By exposing the pharmaceutical industry’s failures Evans also ushered in a new era of tighter regulation and greater corporate accountability.
In the decades since then, conditions for Britain’s thalidomiders have improved markedly. That £20 million settlement has been repeatedly topped up by the government and Diageo, which took over what remained of Distillers in 1997, though the financial support the thalidomiders receive still falls well short of their exceptional needs. In 2010 they extracted a formal apology from the government for their suffering.
They have survived much longer than anyone expected, and – the braindamaged apart – have mostly led remarkably fulfilled lives. Though good jobs were scarce, many have married (mostly nonthalidomiders) and had healthy children. They have variously skied, glided, scuba dived, skydived, climbed Kilimanjaro, and travelled to the furthest reaches of the Earth. One, born armless, learnt to saddle a horse with her foot and took up showjumping. Another became an astrophysicist at Oxford.
‘They have fared extraordinarily well. They have broken every rule in the book as to what should have happened to them,’ says Wallace. Jacqui Morris says, ‘They are humbling, such inspiring people.’ The thalidomiders have also become skilled campaigners who are determined that both Grünenthal and the German government should finally be called to account for what happened half a century ago.
In 2012 Harald Stock, Grünenthal’s chief executive, unveiled a bronze statue of a limbless girl at the company’s headquarters and apologised for the first time to the survivors and their families. But he refused to accept any legal liability for what happened, repeating his company’s longstanding contention that thalidomide was tested according to the standards of the time and that nobody realised a drug could cross the placental barrier.
‘That’s a lie,’ said Evans, whose journalists long ago demonstrated that all the leading pharmaceutical companies were subjecting their products to reproductive testing during the 1950s, and that Grünenthal was receiving complaints about thalidomide as early as 1959.
Grünenthal has also been protected by a secret deal that it appears to have struck with the federal government and that of North RhineWestphalia in 1970. Wirtz and eight other Grünenthal employees had been put on trial and charged with involuntary manslaughter. Documents recently unearthed in official German archives show that a year later Grünenthal’s lawyers and federal health ministry officials met secretly to discuss an ‘overall solution’. The trial was shut down by Josef Neuberger, the state’s minister of justice, who happened to have been a partner in the law firm representing Grünenthal. The judges freed the defendants and granted Grünenthal immunity from further prosecution. The company contributed 100 million Deutschmark to a fund for German thalidomiders.
What Evans calls a ‘judicial scandal’ not only spared Grünenthal; it suppressed copious evidence of the company’s misconduct, making it much harder for thalidomide families to win proper compensation in Britain and elsewhere. In the words of the London law firm Ince and Co, ‘The early discontinuation of the trial caused the vast majority of the contemporary evidence that the prosecution had gathered in support of their case against Grünenthal to remain unheard and unseen.’
That rankles. ‘Think of Hillsborough or Bloody Sunday,’ says Johnson. ‘It’s the same kind of situation where justice has never been done and it burns away. There’s something in the British makeup that doesn’t let injustice rest.’ 2/1/2016 Thalidomide 50 years on: 'Justice has never been done and it burns away' .
Led by Nick Dobrik, the Mill Hill and Cambridge-educated head of the Thalidomide Trust’s national advisory council and a thalidomider himself, the campaigners have engaged lawyers and are now gathering support in the British and European parliaments for their assault on Berlin. The Morrises are planning a special screening of Attacking the Devil in Stolberg.
Specifically, the campaigners want a statement of regret from the federal government, restitution for all of Europe’s thalidomiders so the likes of Lorraine Mercer can live the rest of their days with dignity, and a judicial inquiry to determine the true extent of Grünenthal’s culpability.
The German government shows little sign of accepting those demands. A spokesman at its embassy in London denied any secret deal was struck in 1970 and said British thalidomiders should seek restitution from ‘the British side’ unless they took Contergan, the brand that was made in Germany.
Grünenthal, now a big multinational company, said in a statement that it ‘sincerely regrets the thalidomide tragedy’, had given more than €100 million to the German compensation fund, and established its own foundation for those in urgent need – including British thalidomiders. However it again insisted that thalidomide’s danger to foetuses was ‘not foreseeable’ in the 1950s.
The campaigners are unimpressed. Dobrik calls Grünenthal’s payouts derisory compared to its modernday profits, and says of the German government, ‘It can deny, obfuscate and bury its head in the sand, but it can’t run for ever. It has to face up to the past.’ Evans insists, ‘The German government has a moral responsibility finally to get to the bottom of this.’ The indomitable Lorraine Mercer says bluntly, ‘They didn’t test it. It’s time they came clean. I suppose they’re waiting for everyone to pop their clogs, but I’ve no intention of doing so.’