Thalidomide victims don't need more money

So many of them, scarred and marked apart long before they'd tasted a lungful of air, are inspirations

Simone Baker is 40 today. I was 40 on Monday. It is 40 years since the British medical establishment realised just how dangerous Thalidomide was and, slightly tardily, withdrew it. The anniversary is significant, because the 455 "Thalidomide babies" have been so important and influential.

I was not one of those babies, but there is still a sense in which every one of our generation has grown up with thalidomide. Only a small proportion had to contend with the physical deformities and the sort of reaction they attracted. But there was still a huge awareness that this might have happened to any one of us, a sense of shocked identification that has helped over the years to change attitudes to disability.

When I was young, my mother used to tell me how lucky I had been. A girl a little older than me, who lived near us, had hands that grew from her shoulders. My mother explained how her arms had been damaged and how the drug responsible had been banned mere weeks before I was conceived.

For Simone Baker, things were a little different. Her mother had been prescribed Distaval – a name Thalidomide traded under in Britain – a year before her first baby was conceived. When she couldn't sleep again, early in her pregnancy, she swallowed some of the old pills from the bathroom cabinet. Her daughter became one of the last people to be born with the distinctive deformities inflicted by the drug billed as a wonder.

I've never met Simone Baker. But she's one of a number of people who have been talking part in press interviews to mark the anniversary. I've read them all avidly, and, I have to say, they've all been more than heart-warming. Mrs Baker is married, she has a five-year-old daughter and she works, as she has throughout her adult life, as a secretary and administration assistant. She is tough, independent, happy and positive. She bears no grudges. She has prospered.

She is by no means the only one. Many of the Thalidomide babies grew up to have solid careers, and fulfilling relationships. Among the 455 are the parents of 500 healthy children. It should not be amazing, but it is. Because 40 years ago, these people were being referred to as "it" and their parents were being urged to put them into homes and forget them, or they were being sent to special schools just because they looked different.

And 40 years ago, they and their families were having to fight like crazy for compensation. Simone has talked about being taken to London to appear before an assessment panel and being made to undress and dress in front of them. She remembers crying tears of frustration as she was compelled to show these strange people exactly what she couldn't do.

Despite it all, Ms Baker now says: "So many people see us and want to pity us. But we really don't need their sympathy, because so many of us have had far richer lives than most able-bodied people."

It appears that she is by no means the only Thalidomide baby to have got on in life by employing this zestful approach. So many of this group, scarred and distorted, marked apart long before they'd tasted a lungful of air, are an inspiration. Which is encouraging not just for them and their families, but for the rest of us, too. Everybody likes a happy ending, except for the nastiest of mean old Scrooges. And what do you know, one such curmudgeon has arrived right on time, to spoil this most splendid of feelgood moments.

The Chancellor of the Exchequer, Gordon Brown, has answered the Thalidomide Trust's request for a £6m payment, effectively a tax rebate, in the negative, and suddenly, everything looks different. Tina Gallagher told the Daily Mirror that the decision was "a kick in the teeth". She said: "I have so little money that I have to live on income support.This is typical of disabled people's treatment in this country. We're treated like deviants, an underclass." Likewise unimpressed is the chairman of the Thalidomide Action Group, Freddie Astbury: "We're seen as a weak minority group, and because it happened so long ago we get shoved aside.'

The underlying complaint is that the income of the trust, presently worth £85m because of the stock market's recent poor performance, is taxed, and that payouts should be made, as they have in the past, to offset this. Mr Brown's rejoinder is that the trust has plenty of money – not to mention plenty of capable wage-earners among the 455 registered to it. He feels the £6m can be spent elsewhere, perhaps on people with disabilities but without trusts, people who seem to get more sidelined each day.

I rather agree with him. I think it is worrying that Ms Gallagher should live in poverty, but it seems to me that the Thalidomide Trust must surely be in a position to offer her some help even without the £6m in rebate it has asked for.

It would seem to me that it would be far more patronising to assume that Thalidomide people had nothing to contribute to the tax system. How can taxing income be considered to be treating people as "deviants, an underclass"? Surely it is the opposite? Aren't deviants and the underclass the types in modern folklore who do constantly have their hands out?

Many attempts over the last four decades have been made to gain support for the cause of compensation for those who have fallen foul of thalidomide. But it seems to me that perhaps this job is done, for the moment anyway. The Mirror, in its post-11 September campaigning mode, is the paper that has splashed most aggressively on this story. But its opinion does not seem to me representative of how a lot of Thalidomide people see themselves: "The most desperate people in the country", "Their lives were ruined" and "These tragic victims" are a few of the phrases that litter a short bathetic piece.

Such terms seem almost to be inspired by disgust more than sympathy, too homogeneous, too knee-jerk, more aligned with the sentiments of those 40 years ago who believed the Thalidomide babies to be all the same, all hopeless cases. Those holding such views would never have been able to understand that "tragic victims" could be mothers and fathers, solicitors and actors, drivers and typists, as they have become. There seems, not just as far as Thalidomide is concerned but in issues around disability rights more generally, to be tension between those who want their troubles to be dealt with efficiently and circumspectly and those who wish almost to be defined by their problems.

A middle way is needed, of course, which invests in the infrastructure, training and support that makes life practically easier for all disabled people, rather than directing funding to those groups who are best at lobbying (the Thalidomide lobby is only so good because in the past it has had to be).

If Mr Brown thinks of changing his decision, he should remember that more disabled access at any number of public facilities would touch the lives of many more people than an extra £6m in the Thalidomide coffers could ever do.

However, he should also remember these contradictions exist because disabled people are just like everyone else. Able-bodied or not, some people fail to thrive, maybe sometimes because of nothing more than their own attitude. A decent welfare state should support those people, too, and not punish them for their failures just because they have no obvious physical manifestation of disability.

d.orr@independent.co.uk