Nobody can give him limbs. But what about more cash?
As the Thalidomide Action Group campaigns for more compensation, Esther Oxford meets its founder, a man with money on his mind
Friday 23 June 1995
The father was not so lucky. Your son has no head, the doctors told him; he probably won't live more than a couple of days. Then a little bit later: we've found your son's head, but he has no legs. Then the third version: Freddie has a head but he has no arms and no legs. This last time they got it right. But they forgot to say that Freddie had the longest eyelashes you have ever seen. And he was as bonny as the day. When his mother saw him she wrapped him in a blanket so that no one would see his seal-like body (no legs, little flippers). Then she took him home.
Now when you see Mr Astbury sitting on his electronic wheelchair, nothing but the back of his head poking above the canvas, you think: ah - poor little child. Until you walk round (out of curiosity) and look at Freddie as he is 35 years later: a bullet head with an army moustache attached to a lumpy torso and little else. A head that has a mouth which doesn't stop talking.
Mr Astbury has a cause. He spends his life promoting it. The cause is "the thalidomide victims". Do you really mean `victims'? "Yes," he says. "I can't be bothered with this `differently abled' business. We are victims. To say any different is stupid."
Besides which, it suites his cause to be called "victim". Victim of a horrific pharmaceutical blunder. Victim of a government that won't acknowledge its role in the tragedy; victim of a trust fund that does not pay its members enough money; victim of a company that refuses to pay out bottomless bags of cash.
Then there are the symptoms of victim-hood (apart from the obvious): the arthritis, the short-sightedness, the constipation. Of having children ring on the doorbell just to get a look at you. Of having newspapers follow every step of your life.
For the past 35 years the British public has empathised with the plight of Freddie Astbury - and the 457 other brave faces engraved on the national conscience. Strangers opened their homes, whole towns rallied together to lay on free bus trips. But now these thalidomide victims are sick of sympathy. Money is the issue: Fred Astbury wants Guinness (which now owns Distillers, whose subsidiary made the drug) to give him another pounds 25,000 a year on top of his present income. He will lobby until he gets it.
Freddie's parents thought he was the first thalidomide child born in Britain. In fact he wasn't. Babies were being born all over the country with "flowers" coming out of their shoulders, or no limbs, or no eyes or ears.
William McBride, a young Australian obstetrician, was the first to expose the dangers of thalidomide to the world. His three-day investigation at Crown Street Women's Hospital in Sydney followed the birth of three deformed babies within a six- week period. The hospital stopped prescribing the drug immediately but it was another five months before Distillers agreed to withdraw it in Britain. By then more than 2,000 babies had been affected by the "wonder drug" believed to be the first tranquilliser to be non- toxic even in high doses. Most died in the womb or within a year of being born.
For 12 years parents battled to persuade Distillers to admit responsibility for distributing the drug without proper testing. Although the company did not admit liability, eventually it bowed to public pressure and in 1973 set up a pounds 20m trust fund to ensure lifetime provision for the survivors, which provides Freddie with an index-related annual income of pounds 17,000 (pounds 12,000 after tax). At the same time he was also awarded a lump sum of pounds 33,000, the equivalent of pounds 200,000 today.
The money, says Mr Astbury, is not enough. "People look at our five-bedroomed house and they say: `Why does he want more money?' But it costs money, being disabled. Simple things like changing a light bulb - we have to pay someone to do that."
Mr Astbury has a spanking new house and a one-year-old Rover 419. His four children wear Adidas trainers and Reebok trousers. His room is filled with the latest gadgetry: a huge television with video in front of the bed, a telephone fax machine on the side table, a laser printer on top of the television and the Apple Mac computer in the corner.
His income is about pounds 19,500 a year after tax (pounds 12,000 from the trust fund, pounds 6,000 in social security and pounds 1,500 mobility allowance) - compared with the usual pounds 9,000 awarded by Government to severely disabled people who live on their own and need to pay for carers. The mortgage interest on his sprawling house is paid for. The Astbury family pays just pounds 52 a week towards it.
But Mr Astbury is not happy: "Look at the state of this carpet," he says with disgust. "It is three years old! I can't afford to replace it!" (It is dirty - but perhaps all it needs is a clean.) His wife, Sue, comes in, after struggling with the door. "I can't even afford to get a door that fits!" says Mr Astbury. "I wonder what Guinness would think about that!"
What would you like from life, Mr Astbury? "To do what I've been deprived of," he replies. "I'd like a van so that I can drive myself around; I'd like to own a four-bedroomed bungalow fully adapted so I can use all the rooms; I think I deserve a two-week holiday at Disney every year - for the kids. And I would like a wheelchair that can climb kerbs easily and move up and down so that I can talk to people face to face."
Why can't you work? Other thalidomide adults have become professionals. "I earn more by not working," Mr Astbury replies.
For some time now Mr Astbury has been concerned about the dwindling pool of money left in the trust fund - it was expected to run out by the year 2009. In November 1993 he set up the Thalidomide Action Group (membership of 150) to lobby Guinness for a "top-up". Two months ago Guinness acquiesced: extra funding of pounds 2.5m a year would be added to the fund for the next 15 years.
"Everyone thought I would be grateful when the news broke," says Mr Astbury. "But pounds 2.5m a year is not enough." He wants a structured settlement whereupon Guinness would put pounds 7m into a separate fund each year. This would entitle Mr Astbury to a further pounds 25,000 a year on top of his pounds 19, 500. He also wants his dependants provided for with a lump sum of pounds 50,000 to be paid to them if he should die. "It is not a lot if you consider the profits made by Guinness each year," he says.
The financial adviser to the Thalidomide Action Group, Steven Ashcroft, says he is confident that Guinness will agree to their proposals. "Guinness is being given the chance to own up to their moral responsibility," he says. "By the end of the year I expect the structured settlement to be up and running."
It looks as if they will both be disappointed: Tony Greener, chairman of Guinness, has already rejected proposals of a structured settlement, preferring ("as a responsible and caring company") to pay a "mutually agreed" pounds 2.5m into the trust.
But Mr Astbury is not easily squashed. He is used to lobbying for his cause. He'll talk about the "50-odd" operations he had as a child, about his poor sister who was put in a convent because their parents were too preoccupied to discipline her, about his first wife, who ran off after six months of marriage, then about his second wife and that proud moment when he realised he had become a father.
Then he'll pull out the cuttings: the local authority that kicked up at his mother's decision to send him to mainstream school, the holiday- camp owners who wouldn't let him stay because of his wheelchair.
It is sad - but some other events in Mr Astbury's life strike a different chord. He asked his mother to leave the family home so that he could live there with his first wife (it was his house, he says, and she was an alcoholic); his first wife left him because he enjoyed being "The Casanova of Blackpool" (he had affairs); he took drugs. Mr Astbury smiles coyly when he talks about these events - he seems to expect a mild chastising. But the most he gets is a playful box around the ears from his wife, Sue.
She says she is grateful to Guinness. The money received through the trust supports all four of her children (three are from her first marriage). She doesn't work. Her 18-year-old son doesn't work. Her second youngest son wants to be a footballer. There are no jobs worth having in Liverpool anyway.
While Sue is talking, her youngest son comes in, his socks black from playing outside with no shoes. "He just refuses to wear trainers," she laughs. "I spent pounds 20 buying 20 pairs of socks for him. We had to put 15 pairs in the bin within the first week. He would insist on wearing them outdoors!"
Meanwhile, she has plans to make more money through the courts. A lamp- post fell on her son's foot, apparently. "I'm not going to rest until I've got some compensation for him," she says.
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