Jacqui Browne is exhausted. Her body is broken and she is in constant pain. But, mostly, she, her fellow thalidomide survivors and their families are tired. Very, very tired. They have been fighting for decades for justice, fighting for a meaningful State apology for the immense toll thalidomide has had on their lives.
Browne believes the Irish Government is simply waiting for her to die.
Thalidomide was prescribed to pregnant women in the 1950s and 1960s as a treatment for morning sickness.
One of the worst medical disasters of our time, thalidomide led to deformities and deaths in thousands of babies across the world. Many children of women who took the drug in pregnancy were born without limbs, or shortened limbs, with hearing and vision impairments and injuries to internal organs.
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[ Thalidomide survivors’ group demands proper apology from GovernmentOpens in new window ]
Browne was born in Kerry in November 1961, the same year and month thalidomide was withdrawn from global markets. However, it would be nine months later when the drug was removed from the Irish market and there is evidence to suggest that thalidomide was available in Ireland up to 1964 due to the State’s failure to publicly announce the withdrawal of the drug. There are about 40 thalidomide survivors in Ireland, 28 of whom are in receipt of an ex-gratia payment from the Government.
When Browne was 21 her father handed her a large folder filled with correspondence, medical records, forms, detailed notes and meticulously kept files. He was not just simply giving her a paper file, he was handing over the baton in the fight for justice for his daughter, which he had fought for 21 years.
Forty years later, they are still fighting.
The folder, which Browne herself has added to over the years, tells a story of a childhood disrupted by lengthy hospital stays, an adolescence blighted by isolation and an adulthood of pain, hurt and anger.
Browne was born with impaired hands and forearms. She also suffered from bilateral hearing loss and a speech impairment. Her early childhood was taken up with tests and medical assessments. Aged five, she had the first of many surgeries on her hands.
Browne was also just five when she had to spend a year as a boarder at the Cabra School for the Deaf in Dublin, a long way from her family in Kerry.
“It was my first big separation from my family. I am one of five children. So that had a big impact on me ... but also on my siblings and obviously my parents. I wasn’t there for the day-to-day rough and tumble of daily life,” says Browne.
After a year in Dublin, she returned to mainstream school in Kerry where she remembers being treated “very differently” to other children.
When you have impairments due to the thalidomide drug, you’re all the time compensating. You’re actually overusing one side of your body. So that too becomes inflamed and sore and painful because you can’t use the other side
Once Browne approached adolescence, the damage that thalidomide had done to her hips became apparent when she started limping at the age of 12. While she was initially dismissed by medics to be suffering with growing pains, at 13 Browne was eventually diagnosed with a hip disorder due to thalidomide. In order to treat her hip she endured an entire summer on the flat of her back in traction in Croom Orthopaedic Hospital in Co Limerick.
“It was the summer of my first year in secondary school. So it was a very difficult time for me, emotionally and psychologically,” she says. She will never forget the blue hospital room she was confined to, with weights attached to her legs.
After that summer, she returned to Kerry and entered her teenage years on two crutches. “I started and continued for most of my teenage years living a life on two crutches ... I just didn’t feel like a young teenager.”
A keen hockey and basketball player before her surgery, she was forced to give up all the sports she loved. “I found it very traumatic and very difficult. As a young teenager, you know, that’s immediately two more circles of natural support you are away from.”
More surgeries on her defective hip dominated Browne’s teenage and young adult years.
After that summer of 1975 in Croom, she had three more hip operations as a teenager. As she was too young for hip-replacement surgery, the decision was made to fuse her hip in a fixed position until she could have hip replacement surgery at a later date. The surgery meant another long hospital stay, this time in Cappagh Orthopaedic Hospital in Dublin. To immobilise her hip she had to wear a spica plaster or body cast – which in those days was made of heavy plaster of Paris and covered her chest down to her knees. She also had to be turned every four hours. Once home, she had to continue to wear the body cast for several months.
“I do have the memory of it being quite warm that summer and when you’re in a big plaster of Paris from your chest to your knees and you had to wear things like maternity dresses all summer,” she says. “I didn’t exactly, you know, feel wonderful in terms of my image.”
To date, she has had more than 35 big operations. These include 10 hip-replacement and reconstruction surgeries, spinal surgery, oral and dental procedures, a cuff repair in her shoulder, left shoulder decompression procedures, shoulder replacements, cervical fusion and numerous surgeries on her feet and hands.
Her most recent surgery was in March, when she underwent left reverse shoulder replacement surgery in Bon Secours Hospital in Tralee, Co Kerry. “I live with chronic pain daily,” she says.
As thalidomide survivors get older, their condition worsens due to the wear and tear on their bodies and this is something Browne and her fellow survivors have had to come to terms with. She has noticed “the deterioration of my body over the years. When you have impairments due to the thalidomide drug, you’re all the time compensating ... so you’re doing things maybe differently to how somebody else might do them, but you’re actually overusing one side of your body. So that too becomes inflamed and sore and painful because you can’t use the other side.”
Browne, who has now retired due to ill health as a result of thalidomide, has more than 35 years of experience as a disability equality consultant and has worked at local, national, European, and international levels. She is a member of the disability advisory committee of the Irish Human Rights Equality Commission; and the board of International Foundation Integrated Care. She is also secretary of the board of the Independent Living Movement of Ireland.
“I’m an optimist. I’m always happy. Thankfully, I have good positive mental health, which is a huge benefit. And I have wonderful friends and great family support. But I do find physically there is so much I can’t do.”
Earlier this month the Government wrote to thalidomide survivors with details of an enhanced package of health and social care supports. They also invited the group to meet them in Leinster House.
According to the Government letter and media statement, “this includes prioritised and simplified access to local health and social care professionals, access to therapies both clinical and holistic, independent living supports to include housing adaptations, car adaptations and home supports, annual health assessments and the free travel pass.
“We want to take this opportunity to express our sympathy to survivors and their families – we are sorry for all they have endured, for the hardships they have suffered and for the impact thalidomide has had on their lives. We want to strongly reiterate, once again, their mothers did nothing wrong, and we have never thought otherwise.
“It is regretful that the regulatory standards we have today were not the norm, here or internationally, when thalidomide was first brought to market.”
The Irish Thalidomide Association said the statement was issued to the media without any prior consultation or notice. It was reported by some media outlets as an apology to survivors.
However, according to the association, “this seeming apology caused unfathomable hurt and anger ... An expression of general regret blaming the ‘regulatory standards of the time’ is not an apology. Any expression of sympathy is not an apology. Saying that mothers of thalidomide babies were not to blame is not an apology. Excluding any reference to our ‘unacknowledged’ survivors is not an apology.
“Sixty years on, we are still seeking justice for both recognised survivors and those whom we know have been damaged by thalidomide but have not yet been officially recognised by the State or the German manufacturers of thalidomide.”
The association added: “The healthcare package recently announced by Government was one they were supposed to develop almost 50 years ago. Due to the lack of such a package being in existence until now some of our members have had unnecessary deteriorations in their health and functioning.”
“This Government and the State need to own up to the actions of the past and fix the historical and continuing injustice towards thalidomide survivors in Ireland. The Irish State needs to acknowledge its failures and omissions. Even at this late stage, it needs to cherish us – the acknowledged and unacknowledged survivors alike. This Government and this State need to give all Irish thalidomide survivors, their mothers both living and deceased, the respect and decency of a Dáil apology to acknowledge once and for all that this was the fault of the State, no one else.”
Speaking last week, Taoiseach Simon Harris said the letter sent to survivors was an invitation to speak with the Government and was not the final word on the matter. “I very much look forward to meeting them, to talking to them in person. I think they deserve that I talk to them in person,” he said.
Members of the association have been invited to meet the Government on Wednesday, July 24th, in Leinster House.
After 62 years, Irish thalidomide survivors are still waiting.
Browne is still waiting. “For me personally, if I could have closure, it would mean I can genuinely take this big cloud off from over my head.”
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