65 years on, the battle for justice for thalidomide survivors continues
“Look what happened last time I took a tablet.”
Those devastating words broke the heart of Trish Jackson, as her 94-year-old mother steadfastly refused to take medication in her nursing home. Now an artist, Jackson from Queensland, Australia is one of 3,000 globalsurvivors of the drug thalidomide.
Sometimes sold under the brand name Distaval, it was marketed between 1957 and 1961 as a cure for pregnancy morning sickness and a non-addictive sleeping tablet, and was claimed to be safe for all. Sadly, that wasn’t the case, and it was found to cause significant birth defects.
Jackson’s mother, Margaret, didn’t know she was pregnant when she went to a doctor complaining of migraines. Jackson, 59, said, “He gave mum an injection and threw a packet of Distaval across the table and said ‘Here, take this, it might help with the vomiting.’ His last words were, ‘at least they won’t hurt you.’
Her mother took one tablet, but returned soon after.
Jackson continued, “She realised she was pregnant after the news broke about thalidomide. She went back to the doctor only to find he had destroyed all her medical records. He absolutely denied mum was ever a patient of his.”
Fast forward nine months and Jackson was born with no arms, with her hands, which have three fingers, joined to her shoulders. She said, “I was whisked away and mum didn’t see me for three days, as the doctors decided I was too grossly deformed for her to love me. The doctors said to mum: ‘The kindest thing you can do for Trish is take her home and smother her.’”
At the same time, something similar was unfolding in Sussex, England. Mikey Argy’s mother took the drug to help her sleep in December 1961, having been given it by a doctor. Argy, also 59, said, “The drug had come off the market in November, but it wasn’t publicised until May 1962. They [her parents] went to the pharmacy to get more medication and they said, ‘It’s been taken off the shelves, it’s dangerous.’ My mum knew something was wrong, but everyone said, ‘Don’t be so ridiculous, it’s a one in a million chance.’” After being born, Argy was also taken away due to her half-length arms and club hands with four fingers.
Other tragic stories abound. Many pregnancies were terminated by the drug, and others who were born didn’t make it to puberty. Estimates suggest around 100,000 thalidomide babies were born globally.
Today, there is frustration and anger that German manufacturer Grünenthal has stonewalled attempts by the survivors to get justice. “That is the seething, silent rage that drives many of us completely crazy. There is a rage that comes out of nowhere from many of our people. It’s the unadmitted guilt of companies and the crimes committed against us,” said Argy.
Grünenthal does acknowledge its role in the thalidomide story and has contributed to a charitable foundation for victims, as well as agreeing an out of court settlement with affected families in Germany in 1970. But, crucially, it has never admitted liability. RT requested to speak to the company, but at the time of publication it had not responded.
In 2012, the company’s chief executive Harald Stock addressed the issue at a memorial, stating “I would like to take the opportunity at this moment of remembrance today to express our sincere regrets about the consequences of thalidomide and our deep sympathy for all those affected.” But no compensation was offered and many victims were outraged at what they viewed as a hollow gesture.
Long and arduous campaigning has delivered some compensation from other sources,
In the UK, the drug was distributed by Distillers, who in 1973 paid £20 million into a trust.
Argy said, “It sounded like a lot of money but it wasn’t. By the time we got to the 90s, and Distillers had been bought by Guinness, people with no arms were getting somewhere around £12,000 a year to live on, and it was taxed.”
After a series of takeovers, Diageo absorbed what had been Distillers and paid out more money.
In 2010, the British government published a 'statement of regret’ and pledged £20 million, thanks to pressure from Argy and fellow campaigners, Guy Tweedy and Nick Dobrik, backed by newspaper editor Sir Harold Evans.
“It took the three of us walking in face to face with MPs to convince them why they needed to support us. We had over 250 MPs supporting us and we got what we call the Health Grant,” said Argy, who was awarded an MBE.
“That begun to change everything all over the world for everyone. Once one government issued a statement of regret, that was a massive thing to hear, backed up by hard cash… It sent messages around the world.”
Progress hasn’t been as swift in Australia.
Jackson can access the Health Care Assistance Fund (HCAF), but has to submit receipts and claim money back. In the UK, money is given to individuals who are allowed to judge their own needs. One example is specially made clothing. Argy said, “I go through the knees in my jeans in a couple of months as I’m always kneeling on the floor. We trash our clothing – we take things off with our mouths.”
While Jackson is happy to finally have access to some compensation, many of her compatriots have been excluded. She explained, “There is a lot of people who were unrecognised and never had any help, as you can’t prove you are thalidomide – there are no medical tests.
That’s when we started going after the Australian government and finally they stepped up and are rolling out a package for us. It’s been life changing. They could have made the whole process a lot simpler, but they didn’t.”
There is also a big issue around understanding, Jackson was given government assistance with her bathroom and offered a set of handrails.
The oblivious civil servant was shocked when she asked, “Do the arms actually come with the handrails? As I’ve got no arms.” Other issues arise with disability benefits, as Argy explained how the British system asks if you can walk 20 metres unaided. She said, “If you can, they don’t care if you can’t do it with shopping.”
Driving is also problematic, as Argy can’t press buttons due to her club hand, so needs the electrics adapted. However, there are only a small number of companies who can cater for thalidomide survivors. She has been waiting for over a month for an appointment just to get a consultation about adapting her new car.
She is in a better position than Jackson, though, who can’t drive, and recalled, “When I went to get my learning permits, the police looked at me and said: ‘People like you don’t drive.’ That was the end of it. No matter how many stations my dad went to, they just said ‘no.’”
In everyday life, a lack of applicable aids places a heavy toll on their bodies. Jackson admits her hips are wrecked as she does everything with her feet, even brushing her teeth by standing on one foot and bending the other to her mouth.
Argy has a similar issue with her neck. She explained, “I find myself contorting my body into all sorts of places and doing far more than my physical body can actually manage.”
She underwent surgery, but says doctors and surgeons often don’t appreciate their needs, “Because they don’t know how our structure is, they didn’t notice you can’t push my shoulders back. They pushed them back and wrecked some of the nerves. I woke up with no use of my hands and no use of my right arm, and that went on for five or six months, I had to relearn every single thing you do with your hands. It was desperately, deeply difficult.”
A far darker issue is the guilt felt by their mothers. The effects of thalidomide placed a huge toll on them mentally and physically.
Jackson admits that she didn’t use the toilet alone until the age of 19. She explained, “I hated my school, as it was full of all these disabled kids and in my eyes, I wasn’t disabled. I begged my mum to get me into a normal school, so she door-knocked every school in the area and only one would take me, which was a private school, so mum had to work to pay for it. She would drive up in her lunch hour to take me to the toilet as there was no one else to take me, right up to grade 12, which was extremely embarrassing. All I had was mum and dad, they did everything for me.”
Despite her daughter being eternally grateful for her selfless love, Jackson’s mother has never come to terms with what happened. With tears in her eyes she said, “It’s been really, really hard to watch mum live with so much guilt – no matter how many times I tell her ‘I don’t blame you, it’s not your fault, it doesn’t matter.’ She will have that absolute guilt until she takes her last breath.
It affected dad, too, as he grew up watching me struggle. It affected the whole family, it’s like a ripple that goes right through. My brother and sister missed out on opportunities as I was in hospital.”
Discussing her mother is also the only time Argy shows a flicker of emotion, but she composes herself, mindful that she may read or hear her words. “It destroyed my mother. I’m not quite sure how she managed to stay alive actually. She left after a few years and I always lived with my father, big brother and sister. She has never said she feels guilty. We’ve never had that discussion.”
Her father died when she was a teenager, and feelings run so raw in the family that one of Argy’s siblings attaches blame to her for the disharmony and breakdown of their parents’ marriage.
Even now she avoids certain topics with her mother. “We don’t really talk about it. I tell her about the campaign and she is very pleased, but she has never said, ‘I wish I hadn’t taken the drug.’ I wonder how much I would have loved to hear that. It’s a tough one. I wasn’t protected once my father died – he protected me, but I wasn’t protected after that by anybody in the world at all, until I got my children.”
While strides have been made by survivors, including ongoing legal action in Ireland by campaigners, the global community is far from done in its search for justice. The survivors have Grünenthal in their sights and, thanks to the internet, can easily band together. This is in stark contrast to their earlier years – Jackson, for example, hadn’t met any survivors until she was 25. Now they are all on the same page and want to make sure they end things and get justice for themselves, their parents, and families.
Argy explained how difficult this is. “You can’t sue Grünenthal for thalidomide in Germany, you can’t sue them outside the country – they are protected by the federal government. They were never found guilty of criminal negligence; they were being sued by the state of North Rhine-Westphalia but the federal government intervened and none of the evidence was heard.
Because of that no thalidomider in the world could prove criminal negligence against anybody. So, none of us received the appropriate compensation.”
It’s inspiring to see both women talk with passion, but also a form of comradeship. They have been outsiders all their lives, but gradually have found a network of support. As Jackson pointed out, “We’re the forgotten ones.”
What would constitute justice? Looking straight into her webcam, Argy loses her smiley disposition for a second and offers a view of the original Grünenthal executives many would struggle to disagree with. “They should go to prison for it, and the people who’ve taken over from the people who did it should go to prison – because they’ve continued denying it.”
The statements, views and opinions expressed in this column are solely those of the author and do not necessarily represent those of RT.