Thalidomide fight goes on

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The Independent Online
SEATED on the sofa in the living-room of a former council house in Motherwell, Heather Bird is like a queen on her throne. When she wants another drink of Lucozade she bellows at the top of her voice; when she wants the phone answered she yells again.

At first sight she looks surreal: a torso rising out of the sofa, with heavy shoulders, huge breasts, and little flippers for hands and feet. But when she starts talking, throwing her head back with guttural laughter, the image breaks. A thalidomide victim, she is used to people staring at her and is expert at forcing them to stop.

Heather has been on hunger strike for 10 days. At 32 she has had enough. She is no longer the cute litte girl of the sixties, with the spongy 'arms', artificial legs and ever-smiling face that made passers-by ache with pity for the 'Thalidomide Kid'. Gone is the coy smile of a struggling young adult angling for a compensation packet and a leg-up in life.

Gone, too, is the money. Heather relies on social security and finds it inadequate. When she needed a ramp to get the wheelchair in and out of the front door it took the council two years. She wants more money. Not just for herself but for all of the 459 Thalidomide Kids in Britain.

She says: 'When they decided the amount of compensation in 1973 they didn't expect us to live this long. But we have. And our needs must be met.'

Heather says she will starve herself until the Government and the drug's manufacturer, Distillers, now owned by Guinness, agree to give victims a better deal. She has three demands: tax exemption for money handed out from the Thalidomide Trust and treated as unearned income by the Inland Revenue, incurring 35 per cent tax; a government inquiry into the thalidomide tragedy; and tighter controls on the prescription of the drug.

In the past week she has been joined by two more victims of thalidomide: Kim Morton, 31, a Belfast woman with three children, and Fred Astbury, 33, founder of the Thalidomide Action Group, of which Heather is a member.

Their demands and tactics have irritated the Thalidomide Trust (responsible for handing out money from the fund Distillers established) and the Thalidomide Society (originally set up to offer information, support and advice to the parents of children affected), who say the group is being unrealistic.

The demand for a government inquiry will never be met, they say. All trusts pay tax on their income - it would require a complete overhall of the system to change that. And what is the point of asking for tighter controls? Thalidomide is already regulated by the Medicine Control Agency and consultants know not to give the drug to pregnant women.

'Female patients are given pregnancy tests before thalidomide is used to treat mouth ulcers or Aids,' confirmed Roger Jones, managing director of Penn Pharmaceuticals, a company in south Wales which manufactures the drug.

His company does not export thalidomide but other pharmaceutical companies have a different outlook. In Brazil, thalidomide is widely available to the public.

Nowadays thalidomide is associated with images of deformed babies and grieving parents. But when Distillers introduced it to Britain in 1958, scientists saw it as a breakthrough. It was believed to be the first tranquilliser to be non- toxic even in high doses.

But more than 2,000 children were born with 'flowers' coming out of their shoulders, or no limbs, or no eyes, before doctors felt concerned enough to look for a pattern behind the deformities.

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.

Distillers has always denied negligence. For seven years parents battled to persuade the company to accept responsibility. In 1968, faced with a growing number of writs, it did: the directors agreed to pay 40 per cent of the damages that the children would have received if negligence had been proved in a court of law.

But the payment had a condition attached: the parents had to withdraw their allegations of negligence. Faced with this ultimatum, all but five of the 62 families accepted. More than pounds 1m was paid in compensation.

A barrage of writs from other families whose children had been affected by the drug soon flooded in. In 1973, following a high-profile campaign by the Sunday Times and concerned Distillers shareholders, a pounds 20m trust fund was set up by Distillers to ensure lifetime provision for a further 342 children.

The settlement was accepted in law in July 1973. Fred Astbury was awarded pounds 33,000, the equivalent of pounds 200,000 today. He has no arms or legs. Kim Morton was awarded pounds 19,000 ( pounds 115,000 today); she has no legs but some length of arm. Heather got pounds 30,000 (about pounds 180,000 now).

By this time many of the children were approaching puberty. Questions about future concerns such as infertility or incontinence were not considered, said Heather, who has been trying for a baby for seven years. 'If I knew then what I know now, I would never have accepted the offer,' she said.

Most of the Thalidomide Kids are now in their early thirties. Some have gone on to complete university degrees, find jobs, marry, and, to the delight of everybody, to produce healthy, full-limbed children. Others have led less fulfilling lives. A great many feel forgotten, exploited, betrayed.

Heather never sought attention. She wanted to be 'normal'. From the age of three she would go through 12 potties a week - humping her way across the backyard pretending she had legs. By the age of five she had artificial legs. When she tired of the strain she used a go-kart made for her by her father. With two crutches clasped in her flipper-like hands she would push herself along.

In her teens Heather became too heavy to balance on legs and was forced to buy a wheelchair. She has used it ever since. But even now, sitting marooned on a sofa, she refuses to see herself as anything but able- bodied: 'When I walked in . . .', she might say, or 'When I stretched out to get . . .'

Day-to-day routines are a grind. She will admit that much. It takes two hours to make toast because the kitchen is built at the wrong height. Her boyfriend has to take her to the lavatory because it has not been adapted to her needs.

She has not received any extra money from the Government or Guinness yet. But she has already decided how to spend it. She wants a swimming-pool so that she can exercise; a kitchen so that she can cook; a bathroom where she can bathe with a bit of privacy; and a new wheelchair.

Murray Loake, spokesman for Guinness, says the company has no intention of topping up the trust fund. He admits that when Guinness bought Distillers in 1986 it took on responsibility for victims of thalidomide (about half a dozen have successfully claimed compensation), but says: 'We have no responsibility for claims settled many years ago.'

(Photograph omitted)