Only €2 million was used out of the €30 million “special needs” fund in 2014
Christiane Seifert takes a visitor around her ground-floor flat in Hamburg. She opens a window with her shoulder, the patio door with her bare foot. At her computer, she uses her toes to type her emails. The 54-year old deftly demonstrates just a few of what she calls the “tricks” she uses to manage her everyday life.
Born without arms in January 1961, Ms Seifert is a thalidomide survivor. Her mother was prescribed the drug, which was first marketed in the late 50s in West Germany under the name Contergan, to counteract the effects of morning sickness, with devastating consequences. Ms Seifert was one of up to 7,000 born in Germany with phocomelia, or malformation of the limbs, 60 per cent of whom died. More than half a century later, she is still struggling for recognition for her plight.
“If even one person had ever come to visit me in that time to see how I cope with lif,” she said. “But no one has ever even asked.”
She talks with pride about her inventive spirit which has enabled her to come up with all sorts of methods for how to live without arms — all she has is a tiny little finger on either shoulder, marking the exact point in the first trimester of pregnancy when her mother started taking the drug as the limbs were beginning to grow. From toeless socks (try putting a normal sock on with no arms) to lifting her babies out of their pram with her teeth, showing a remarkable resilience to the constant challenges she faces, she has mastered most tasks in life. For the tasks that still leave her puzzled, there are always internet forums in which survivors discuss everything from how to open a tin to how to break an egg.
After years of neglect by authorities and by Grünenthal, the company that manufactured the drug, which worldwide left 10,000 infants without limbs, half of whom died, the German government’s decision in 2013 to considerably raise pension payments to the victims was widely hailed as a victory. Grünenthal had paid an additional €50million into the fund in 2009.
“My monthly pension rose from €1,150 to €4,700,” she said. “It was the equivalent of winning the lottery.”
Future needs
But 18 months on, her triumph rings hollow, because she believes that there has been woeful consideration of her or other thalidomide survivors’ future needs.
Survivors’ groups have even alleged that the government is actively hindering victims from accessing the full amount of money they were promised in the run-up to the 2013 election.
Depending on their level of disability, Contergan survivors in Germany now receive an annual pension of between €7,300 to €83,000. They are also able to tap into a €30million “special needs” fund for crucial investments such as dental operations or specially commissioned furniture, controlled by the government-controlled Contergan Foundation.
Yet in reality, survivors say they are hindered from accessing the fund.
“To get the Contergan Foundation to pay for even small investments like a dressing stick to help victims with short arms to put on their clothes, applicants need to show a medical prescription as well as proof that the cost cannot be carried by their health insurance provider — an unwieldy process which discourages many from applying in the first place,” Andreas Meyer, the president of Germany’s association of Contergan victims (BCG), said.
Gernot Stracke, chairman of the Aid Organisation for Contergan Victims, Hilfswerk fntergangeschgte e.V, himself a survivor, said: “It’s extremely degrading. Everything has to be strictly categorised and we’re basically dependent on the state for our every need.” He and Meyer listed seemingly straightforward claims that had not been approved, such as a box-spring bed to make it easier for someone with short arms to get in and out of bed, which was rejected because the item did not feature on a catalogue of pre-approved items.
The Guardian has learned that only €2million was used out of the €30million fund in 2014. “€28m was simply returned to the government coffers at the end of the year,” said Gernot Stracke, chairman of the Aid Organisation for Contergan Victims.
Crucially, survivors are unable to apply for money to pay for assistance services — such as cleaning and cooking, — the single biggest concern for Contergan survivors who are now in their 50s and 60s and who are going to more help in the coming years.
“Many of the victims have for their lifetime been looked after by their parents or partners,” said Oliver Tolmein, a Hamburg lawyer specialising in disability rights.
“Now that many of their parents are dying and partners are retiring, there will be a growing need for professional help around the home. The government knows full well that €30m won’t suffice for that.”
Seifert is too aware of the potential problems she faces. She recently had a shower-toilet installed, so that even if she needs someone to help her go to the toilet, she doesn’t have to endure the indignity of them having to wipe her afterwards. “That was a god-send,” she said. But a specially-adapted shower to replace the bath which is impossible to get out of without help, costs more than €20,000, and she is unlikely to ever be able to afford it. She has taken advice to ensure she will be able to use a wheelchair in her flat, a prospect which she thinks is inevitable as her limbs deteriorate.
“My husband is 10 years older than me, he is my sole carer, but I have to envisage a time when he will not be able to help me,” she said.
Further, health complications, such as pains in Ms Seifert’s legs and feet, or a problem with her pancreas which her doctor fervently believes is connected to the thalidomide, have not been recognised by the Contergan Foundation.
“They simply say complications or ‘secondary failures’ are not recognised, but refuse to accept medical testimony that might persuade them otherwise,” she said. The severity of her disability, measured according to a points system, from 1 to 80, is relatively high, at 63. “But they made that assessment when I was 11 years old and it has never been reviewed.” “No one can explain to me why I’m now not classed higher — if I was 2 points higher, my pension would be €500 a month more”.
Oliver Tolmein, a Hamburg lawyer specialising in disability rights, criticised also the lack of pressure on Grünenthalto care for its victims. “In effect, this time bomb has been taken away from Grünenthal and placed into the taxpayers’ hands,” he said.
Victims’ organisations say the government is deliberately blocking access to the funds to save money.
“In 2013 we were promised less bureaucracy and more transparency for the victims, but the opposite has happened,” said Mr. Meyer.
“I can only conclude that the process is so complicated because it’s in officials’ interest that the victims don’t claim the full amount,” Mr. Meyer said. Why can’t the €30m be transferred directly to the victims, when they so clearly need the support?”
The Contergan Foundation denies having intentionally tried to obstruct bids for support. But its new board chairwoman, Marlene Rupprecht, said the foundation had not always ruled in the best interest of the victims since the new fund was set up. “We’re currently looking at making a number of changes to ensure that caseworkers will in the future act more in the citizens’ interest,” she said.
Ms Seifert said she is tired of the fight. “Many thought, like many other Contergan babies, I would die,” she said. “But over 50 years on, I’m still here, even if many people had wished I and others had long since died.” — © Guardian Newspapers Limited, 2015
