Alison O'Connor: State still holding out on Thalidomide survivors 61 years on

If there's a Cabinet reshuffle, the Irish Thalidomide Association could end up seeking necessary medical support from their 26th minister for health. Enough already. Truly. Let’s get it done.

Irish Thalidomide Association spokesperson Finola Cassidy outside Government Buildings after her meeting yesterday with Taoiseach Micheál Martin and Health Minister Stephen Donnelly. Picture: Sam Boal

Finola Cassidy did not want a photographer for her wedding day. Unusual for a bride, but Finola did not want her “gammy arm” showing in any photographs. 

She offers this bit of information without prompting.

A veteran campaigner, Finola knows exactly what hits home with journalists in how they present stories in order to catch the public interest.

For over six decades, the denial of justice in her case, and so many others like her, has meant that Thalidomide survivors have had to publicly hawk their deformed limbs as a result of the clear neglect of the State.

Decades later, there are 40 Irish survivors left and a handful of elderly parents, including two 93-year-old mothers.

Justice still eludes them.

Irish Thalidomide Association members arriving at Government Buildings yesterday to meet Taoiseach Micheál Martin ahead of the 61st anniversary of the withdrawal of the toxic thalidomide drug worldwide — with the exception of Ireland. Photo: Sam Boal/Rolling News

Expected at one time not to survive childhood, their physical condition worsens as they age. But the State officially fights them still. It is shameful.

“I didn’t want my gammy arm in my wedding photographs,” said Finola, who was born in Cobh in 1961. “It’s not easy for people with no arms, no legs, with missing ears, to have photographs taken. But we have had to parade ourselves.

We just want to go back to being private citizens. We deserve our privacy.

Next Thursday marks that 61st anniversary of the international withdrawal of the toxic drug, Thalidomide — except, of course, that it was not withdrawn in Ireland.

A protest is planned outside Leinster House and, inside, Labour party leader Ivana Bacik is hoping to achieve cross-party support for her party’s motion on delivering “long overdue justice for thalidomide survivors and their families” seeking a State apology and necessary medical assistance.

The Irish Thalidomide Association (ITA) met Taoiseach Micheál Martin yesterday. He said after the meeting that a process to address the concerns of thalidomide survivors will be established next month.

Mr Martin said the process would begin on December 1 and that an independent chair would be appointed to oversee it. 

The ITA described the meeting as constructive. Finola said the group had a small number of demands. They included a State apology and an appropriate compensation package to include provisions for medical expenses.

In the week in which the indomitable Vicky Phelan died, it is worth reflecting on why a proper recall was not done in Ireland of thalidomide — which was actually sold here under 10 different brand names, including Softenon. 

Over 51,000 packets of the then wonder treatment for morning sickness were bought over the counter in Ireland.

It is well worth watching an excellent RTÉ Scannal from last month which tells the story of how the drug, which passed through the placental barrier, was withdrawn in November 1961 from the international market, and notices issued at that time to the Irish distributors and the Irish government as the licensing authority.

There was no sense of urgency in the notification sent out by the distributor, just a regular withdrawal slip, sent to chemists about withdrawing the drug.

November 2021: Thalidomide survivor Maggie Woods laying a white rose outside the Dáil to mark the 60th anniversary of the international withdrawal of Thalidomide. File Picture

At no point over the next six months did the Department of Health or the distributors, Whelehan’s, issue a public warning.

Indeed, according to a former minister for health, John O’Connell, he was able to buy thalidomide in a chemist down the country two years after the government said it had been taken off the shelves.

A total of 10,000 babies worldwide were born affected by thalidomide, which was made by German company Grunenthal.

Half of that 10,000 died in the first year after birth, leaving 5,000 surviving into adulthood.

It was an incredible 10 months after that worldwide withdrawal before there was any mention in the Irish media of the drug’s enormous toxicity to babies.

Even then, the threat was identified as thalidomide rather than the other brand names people would have been familiar with.

It lay in bathroom cupboards all over the country waiting to be taken. The government at the time considered making a public statement but decided against it.

But let us also consider what action some of those women might have taken had they been given the choice. Might they have travelled abroad to have a termination?

Journalist Olivia O’Leary, who did sterling journalistic work on this issue with an RTÉ radio documentary in 1972, explained how an interview was sought with then health minister Erskine Childers in 1973 to try and get an explanation for the lack of warning.

It was felt, apparently, that not that many pregnant women would have taken the drug and the government had not wanted to alarm those who might have done so and were pregnant.

How utterly extraordinary that this occurred, and yet how unsurprising given that it is just another example of the treatment of Irish women over decades when it came to reproductive choice.

Funny how the women in other countries were warned in a timely manner about the dangers of this drug. They were deemed able to handle it.

There is no need here to yet again rehearse all our scandals and controversies — a rotten misogynistic system, at best dressed up as paternalism.

With the changeover in the Taoiseach’s office due in just a few weeks, the Irish Thalidomide Association is acutely conscious that yet another opportunity could slip by without their situation being finally sorted.

In that event, if there are other changes around the Cabinet table, Finola Cassidy explains they could potentially be dealing with their 26th minister for health.

Enough already. Truly. Let’s get it done.