Mikey Argy, who has raised two children as a single mother despite being born with foreshortened arms, suffers from acute back pain after a lifetime of bending and can no longer carry saucepans or manage zips and buttons. “My body feels old,” she says, though she too is only 53.
Tom Yendell is a professional artist despite being born armless. He paints, writes, eats, drives, dresses and brushes his teeth with his feet. But after 53 years all that unnatural movement is taking its toll. His knee joints are giving out. “They’re not as good as they used to be,” he laments.
Most of Britain’s 468 surviving thalidomiders (a term some people affected use to describe themselves) are suffering musculoskeletal deterioration as they age. Their joints are wearing out after decades of performing everyday tasks with teeth, toes or stumpy arms. “They’re degrading fast,” says Martin Johnson, until recently director of the Thalidomide Trust.
Almost as frightening is losing the independence they have fought for and cherished most of their lives. They realise they will need carers, but hate the idea of burdening their children as they once burdened their parents. In short they will need more money, but they are not looking to the government for that. They are looking to Germany, the source of thalidomide.
They want justice too. They want Chemie Grunenthal, the company that invented thalidomide, finally to admit liability, and reparations from the German government for allegedly shielding the company from prosecution. “They collectively and passionately want justice brought to Grunenthal,” Johnson says.
Grunenthal began marketing its new “wonder drug” in 1957 as safe, though it had never tested the drug on pregnant animals. Thousands deformed babies were born worldwide before Grunenthal withdrew thalidomide four years later, having fought to suppress evidence of its disastrous side effects.
In Britain, thalidomide was sold as Distaval by the drinks company Distillers. Doctors let some babies die at birth. Half were dead within a year. The survivors’ families were left to cope by themselves because neither Distillers nor Enoch Powell, the health minister, accepted responsibility. Mothers were wracked by guilt. Fathers walked out. Their deformed children were widely shunned. It took a decade, and a sustained campaign by Sir Harold Evans’ Sunday Times, to wring £20 million compensation from Distillers.
But against all odds most thalidomiders – the brain-damaged apart – have led fulfilled lives. Many have married and had children. They have travelled, skied, glided, scuba dived, skydived and climbed Kilimanjaro. One, born armless, learned to saddle a horse with her feet and became a show jumper. Another became an astro-physicist at Oxford. They hate being called ‘victims’.
They have also become formidable campaigners. They have secured an apology from the government, and much more financial support – but still not enough. In 2012 Grunenthal finally expressed regret and gave 100 million euros to a German compensation fund, but continued to insist that thalidomide was tested according to the standards of the time.
Documents recently unearthed in German archives suggest that in 1970 the federal government and that of North Rhine-Westfalia agreed an “overall solution” after nine Grunenthal employees went on trial for involuntary manslaughter. The trial was closed by Josef Neuberger, the state’s minister of justice, who was also a partner in the law firm representing Grunenthal. The judges freed the defendants and granted Grunenthal immunity from further prosecution. Grunenthal gave 100 million Deutsche Marks to Germany’s thalidomiders (and a further 500 million euros in 2009).
As a result it’s been harder for thalidomiders elsewhere to win just settlements. British thalidomiders are now targeting Berlin. “Think of Hillsborough or Bloody Sunday,” Johnson says. “It’s the same kind of situation where justice has never been done. There’s something in the British make up that doesn’t let injustice rest.”
Call the Midwife continues on Sundays at 8pm on BBC1