65 years on, the battle for justice for thalidomide survivors continues — Analysis
Thalidomide’s dark legacy dates back to 1957, when it was first marketed. RT talks to Thalidomide’s survivors, determined to bring their creator to justice
“Look what happened last time I took a tablet.”
Trish Jackson’s mother, a 94 year-old woman from Queensland, Australia refused to accept medication. Jackson is an artist from Queensland in Australia. She is also one of the 3,000 worldwide artists.Survivors of drug thalidomide.
It was sometimes sold as Distaval and promoted between 1957-1961 as a remedy for morning sickness in pregnancy and an anti-addictive sleeping pill. 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.’
One tablet was taken by her mother, who returned it soon thereafter.
Jackson continued, “She realised she was pregnant after the news broke about thalidomide. When she returned to her doctor, she discovered that he had erased all of her medical records. He absolutely denied mum was ever a patient of his.”
Nine months later, Jackson is born without arms and her hands are joined to her shoulders by her three fingers. According to her, “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.’”
The same thing was happening in England, Sussex. 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] To get additional medication, I visited the pharmacy. They said that it was not possible. ‘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.’”Argy’s half-length arms, club hands and four fingers made it difficult for her to be conceived.
Many other sad stories are available. Many pregnancies were terminated by the drug, and others who were born didn’t make it to puberty. According to estimates, around 100,000 thalidomide-treated babies were born worldwide.
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. Many of us feel a sense of rage that seems to come out of nothing. It’s the unadmitted guilt of companies and the crimes committed against us,” 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. Importantly, however, Grunenthal has never acknowledged liability. RT asked to speak with the company but it did not respond at time of publication.
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.”However, no compensation was provided and victims felt outraged by what they perceived as hollow gestures.
The long, exhausting campaigning paid off in some other ways.
In the UK, the drug was distributed by Distillers, who in 1973 paid £20 million into a trust.
Argy stated, “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.”
Following a string of acquisitions, Diageo acquired Distillers’ assets and made 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. With over 250 MPs backing us, we achieved what we refer to as the “The Deal”. Grants for health,”Argy received 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 has access to the Health Care Assistance Fund, (HCAF)., But they must provide receipts in order to get the money back. Money is granted to people in the UK who can assess their own financial needs. Specially made clothes is one example. Argy added, “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.”
Jackson was happy to receive some compensation. However, Jackson’s compatriots were not. 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 PackageIt’s been life-changing for us. It’s been life changing. They could have made the whole process a lot simpler, but they didn’t.”
Jackson received government aid with her bathroom, and was offered handrails.
She was surprised when the blind civil servant asked. “Do the arms actually come with the handrails? As I’ve got no arms.” There are other issues with disability benefits. Argy explained that the British system requires you to be able to walk unaided 20 meters. She stated, “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. There are very few companies that can accommodate thalidomide victims. Her wait has been over a month to be seen for a consultation regarding adapting her vehicle.
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.’”
A lack of appropriate aids can have a devastating effect on a person’s body. Jackson says her hips hurt because she uses her feet for everything, including brushing her teeth. She even does this by standing on one side and then bending her other towards her mouth.
Argy is experiencing a similar issue in 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. Some nerves were harmed and they pushed them away. My right arm was paralysed and I couldn’t use my hands. This continued for several months. It took me five to six months to learn how you use your hands again. It was desperately, deeply difficult.”
The guilt their mothers feel is far worse. Their mental and physical health was severely affected by the side effects of thalidomide.
Jackson admits that she didn’t use the toilet alone until the age of 19. Jackson elaborated, “I hated my school, as it was full of all these disabled kids and in my eyes, I wasn’t disabled. So I asked my mother to put me in a school. As there wasn’t anyone else, she drove up during lunch to get me to the toilet. It was very 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. She spoke with tears in her eyes. “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.
As a father, he was also affected as he watched 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.”
Argy is most expressive when she talks about her mother. However, she keeps her emotions in check and composes her mind, being aware of the possibility that she might hear or read her words. “It destroyed my mother. I’m not quite sure how she managed to stay alive actually. My father, brother and sister were with her for a long time before she moved on. She has not said that 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 though she is a teenager, she still avoids discussing certain subjects with her mom. “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 survivors made great strides, campaigners are still taking legal action against Ireland and continuing to seek justice globally. 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. They are now all in the same boat and wish to end these things, get justice for their families, parents and themselves.
Argy explained the difficulty of this. “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 guiltyThey had been sued for criminal negligence. However, the North Rhine-Westphalia state was trying to sue them. But the federal government intervened..
That is why no other thalidomider could ever prove any criminal negligence. So, none of us received the appropriate compensation.”
It’s inspiring to see both women talk with passion, but also a form of comradeship. Although they have lived as outsiders their entire lives, the women have gradually found support through a community. Jackson pointed this out. “We’re the forgotten ones.”
How would justice be defined? 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.”
Statements, opinions and views expressed in this column do not reflect those of RT.