Finola Cassidy is spokesperson for the Irish Thalidomide Association. Her parents were also activists for those affected by the drug. Born in Co Cork, she lives in Dublin with her family
The first time I heard the word thalidomide, I was sitting at the end of my parents’ bed as my dad explained why my arm was the fault of this drug. I had spent my life saying, ‘My arm shrank in the wash’ or ‘My finger fell off’. I didn’t go deeper at that point. But it took me a while to learn how to spell the word.
As my parents started the Thalidomide Parents’ group and as my dad, Cormac Kilty, was getting some media coverage, they were worried people would say something to me about it. They wanted me to have the truth, and not someone else’s version of it. I was born in October 1961, in Cobh, Co Cork. We moved to Dublin when I was six. My little left arm had no radius bone and a tiny, deformed ulna. It has four malformed fingers of little use. I’ve no strength or muscle capacity in that hand.
My right hand has a tiny thumb and there’s carpal tunnel in both. There’s very little strength in my hands but lots of painful nerve damage. The hardest time on my hands was when I had my own kids. Lifting them was difficult. I’d be lost without hearing aids. I’m rarely sick, but I get very sore.
There was never any guilt attached to Mum and it was never talked about that way at home, but I knew it was unspoken. As she got older, I really got to understand how hard it had affected her too.
In Ireland, there were 51,000 packets of Softenon tablets containing thalidomide sold in Ireland in 1961 alone. Mothers took it for morning sickness and babies were born without limbs, with shortened limbs, problems with their hearing and vision and organs.
There are 40 survivors in Ireland today.
I have a picture of a chemist’s receipt from my mum with everyday stuff, but also 25 tablets of Softenon. The receipt is from the month I was born, so if Mum had got pregnant again and the tablets were in the cupboard, she might have taken them, not knowing then that they had caused my damage.
No proper recall was ever issued here.
This is one of the issues we are trying to highlight. We laid 60 roses at the Dáil in November, to mark the 60th anniversary of the withdrawal of thalidomide by the German manufacturers Grünenthal in 1961, but in Ireland the State took a decision not to issue a warning for a further nine months.
When I was born, my disability was regarded as an act of God. They weren’t joining the dots with the other babies born with similar disabilities, many of whom died in their first year. We know of people who were born here up to 1963 and 1964 and needlessly injured.
The State needs to acknowledge its part in this story. Our lives, going forward, need to be helped. We weren’t expected to live this long and we have deteriorated faster than an average 60-year-old from the overuse and misuse of our damaged limbs.
The minister keeps saying they are bringing the heads [early draft] of a thalidomide Bill to the Dáil. But they refuse to meet us to hear first-hand what our unique needs actually are.
Statutory healthcare isn’t worth the paper it’s written on in our broken health system. No health minister has met us since James Reilly. Mary Harney offered a one-off settlement of €62,500 each, and some accepted this. But how does someone with no arms or legs plan for old age on that? We’ve had no choice but take the State to the High Court.
I’m blessed with my family, the one I was born into and my own family now. The seamless way they all mind me. I look like an active person but that’s because they all have my back.
In our group, survivors lead extraordinary ordinary lives, but it’s agony to have to fight. Where do they think we’ll get the energy to go on like this and parade ourselves in public? There will be fewer of us at 70.
In conversation with Sarah Caden