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Remembering thalidomide survivor Jacqui Browne: ‘She raised the bar for us every day of our lives'
Remembering thalidomide survivor Jacqui Browne: ‘She raised the bar for us every day of our lives'

Irish Times

time08-07-2025

  • Health
  • Irish Times

Remembering thalidomide survivor Jacqui Browne: ‘She raised the bar for us every day of our lives'

Courageous, inspirational, intelligent, a fearless advocate, champion of human rights, voice for the voiceless, determined, full of devilment, immensely kind, funny and ferociously independent. Some of the words used to describe Jacqui Browne, who died peacefully at home on Monday, June 23rd , surrounded by her loving family. She was 63. Born in Tralee to Donal and Jean (née Boursin), Jacqui was one of five children and part of a loving, tight-knit family. Recalling her birth, her brother Donal J Browne said he could feel the palpable excitement and joy at this little bundle coming into our lives. 'She certainly raised the bar for us every day of our lives.' She was also one of thousands of babies affected by the thalidomide drug. READ MORE 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, it led to horrific 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 with shortened limbs, hearing and vision impairments, and injuries to internal organs. Browne was born in November 1961, the same year and month that thalidomide was withdrawn from global markets. However, it would be nine months later, in 1962, when the drug was removed from the Irish market. There is also 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 approximately 40 thalidomide survivors in Ireland, 28 of whom receive an ex gratia payment from the government. Born with impaired hands and forearms, Browne also suffered from bilateral hearing loss and a speech impairment. Her early childhood was taken up with tests and medical assessments. At the age of just five, she had the first of many surgeries on her hands, and orthopaedic procedures like these were to continue throughout her life. She was just five years old 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. Speaking to The Irish Times last year, she said: '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.' After a year in Dublin, she returned to mainstream school in Kerry, where she remembers being treated 'very differently' from other children. [ 'A woman of conviction and compassion': Tributes paid to disability activist Jacqui Browne at funeral Mass Opens in new window ] Her early childhood, adolescence and indeed adult life were frequently interrupted by hospitalisations, medical interventions and numerous surgeries. In total, she had more than 35 big operations. These include 10 total hip replacement and reconstruction surgeries, spinal surgery, oral and dental procedures, cuff repair in her shoulder, left shoulder decompression procedures, shoulder replacements, cervical fusion and numerous surgeries on her feet and hands. Despite living with chronic pain throughout her life, she had a warm heart and a wide, infectious smile, and simply got on with things and found new ways to overcome the many challenges life threw at her. Like the time she was in a full body cast as a teenager and strapped her two crutches to the side of a Honda 50 to keep up with her friends. Despite breaking her hip during a boat race, she continued up the steep jetty, carrying the boat out of the water. And when she was advised by her orthopaedic surgeon to give up her beloved sailing or risk needing a wheelchair, she sailed across the Atlantic Ocean. A highly accomplished sailor, Browne was a long-time member and public relations officer of Tralee Bay Sailing Club. In 2010, she was a crew member aboard the Cork Clipper, Ireland's entry in the Clipper Round the World race. Jacqui Browne, who died at 63 On leaving school, she worked for AIB for many years before returning to university to study at night. She received a BA in Economics and Politics from University College Dublin and a Master's in Education from Trinity College Dublin. Browne had a keen intellect and dedicated her life to advocating for the disability sector . With more than 35 years of experience as a disability equality consultant, she worked at local, national, European, and international levels. She served as chair of the DPO Network – an alliance of five national organisations of disabled people working together to secure the implementation of the UN Convention on the Rights of Persons with Disabilities. She was a member of the disability advisory committee of the Irish Human Rights and Equality Commission (IHREC), the board of International Foundation Integrated Care and secretary of the board of the Independent Living Movement of Ireland. She was also a former member of the Commission on the Status of People with Disabilities (1993-96), whose report, A Strategy for Equality, was a blueprint for disability rights in Ireland. A dedicated patient advocate, Browne was actively involved as a patient advocate and representative with a range of organisations, including the Centre for Arthritis Research in UC , the Irish Platform for Patient Organisations, Science and Industry; and the HSE Board Committee on Patient Safety and Quality. Most of all, I loved her mischievous sense of fun and her absolute loyalty to friends and family — Dr Austin O Carroll In a statement expressing its deep sadness on her death, the IHREC said the commission had 'benefited hugely from her wealth and depth of over 30 years of experience as a disability equality activist and consultant. Her work was impactful and led to lasting change for disabled people in Ireland'. Liam Herrick, chief commissioner, said, 'Jacqui Browne was a courageous and tireless advocate for disability rights and equality. Her voice, wisdom and commitment shaped not only the work of this commission but also the broader landscape of human rights in Ireland. She brought lived experience, a deep understanding of policy, and a powerful clarity to every conversation. Her contributions advanced and shaped real and lasting progress for disabled people, and her legacy will continue to inspire and guide us.' One of her lifelong friends and fellow thalidomide survivor, Dr Austin O Carroll , remembers her as 'relentless, passionate, persuasive and unstoppable in her pursuit of justice'. 'I saw how she supported so many other groups facing exclusion, sharing her experience of advocating for justice. I saw the joy she got from sailing and the irrepressible determination to conquer the oceans despite her disability. I saw so many times in hospital beds unbowed by pain and immobility, but cracking jokes, and planning her next holiday. But most of all, I loved her mischievous sense of fun and her absolute loyalty to friends and family.' 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 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. [ Thalidomide survivors' group demands proper apology from Government Opens in new window ] Together with the thalidomide community, Browne fought for decades for justice and a meaningful State apology for the immense toll thalidomide had had on their lives. After 63 years, Irish thalidomide survivors are still waiting. Speaking to The Irish Times last year Browne said: 'For me personally, if I could have closure, it would mean I can genuinely take this big cloud off from over my head.' Speaking at her funeral in Tralee, her brother Donal said: 'Today is not a day to criticise the government for its failures to the thalidomide community. It is not a day to criticise them for their failure to withdraw the drug in a timely manner, and it's not a day to criticise them for their failure to apologise or to make any acknowledgment of wrongdoing. Those are matters that will have to be dealt with at another time, and unfortunately, Jacqui's crusade of more than 40 years and my parents' crusade of over 63 years will have to continue and will continue on behalf of the thalidomide survivors.' He called on the Government to issue 'an apology and an acknowledgment' to thalidomide survivors and said that a healthcare package was 'urgently required'. 'We must all work together for truth and justice,' he said.

Terry Prone: Memory of late Thalidomide victim Jacqui Browne should be honoured
Terry Prone: Memory of late Thalidomide victim Jacqui Browne should be honoured

Irish Examiner

time29-06-2025

  • Health
  • Irish Examiner

Terry Prone: Memory of late Thalidomide victim Jacqui Browne should be honoured

Just under a year ago, Jacqui Browne stated her grim certainty. That certainty was that the Government was simply waiting for Irish Thalidomide survivors to die. This week she died, her death not probative of such an intent, but a reproach to the system, nonetheless. She held that certainty even though, this time last year, the Government was indicating that it would take a new approach to solving the problems caused by doctors prescribing a morning sickness drug to pregnant women, those doctors unaware that it would cause grievous damage to their unborn babies. Long after that drug had been removed from sale in other countries, it lurked on the shelves of pharmacies here, ready to maim and disfigure. Jacqui Browne, front, with other members of the Irish Thalidomide Association arriving at Government Buildings in 2022 for one of many meetings where they sought long-overdue justice for survivors of the Thalidomide drug. File picture: Sam Boal/Rolling News Kerry woman Jacqui Browne was one of the babies born disastrously damaged by Thalidomide. Her hands and forearms were shortened. Her hearing less than normal. Her speech impaired. When most toddlers are learning to play and explore, Jacqui was being poked and tested, torn from her family for special education in a school for deaf children in Dublin. The first of 35 major surgical operations was done to the little girl when she was a tiny five-year-old. Big surgical interventions continued throughout her life. And yet, she forged a career for herself, internationally, as a disability equality consultant. Intrepid yachtswoman She had a life; becoming a yachtswoman who survived a shipwreck near Java. The Cork Clipper — with Jacqui Browne among the crew — leading the fleet out of port at the start of Race 3 from Rio to Cape Town in the 2010 Clipper Round the World Race. File picture: Clipper Ventures/PA One of a group competing in the Clipper Round the World Yacht Race 15 years ago, when their boat went aground, she and the rest of the crew managed to get to a place where they could survive until rescue boats came. Despite the never-ending problems caused to her life by Thalidomide and the corrective surgeries that never seemed to be complete, she was a self-confessed optimist. 'I'm always happy,' she confirmed. 'I have wonderful friends and great family support. But I do find physically there is so much I can't do.' Along with the other 40 survivors (together with some people who the Thalidomide Association believe to justify adding to that number), she went public in recent years to ask the powers that be to apologise to the mothers who have blamed themselves all their lives for the hurt to their children caused by the 'miracle' drug. What emerged last year aggravated, rather than assuaged, the anger of the survivors. It was an expression of sympathy rather than a straight-up apology. In its aftermath, another mother died. The Thalidomide survivors, Jacqui front and centre among them, have for years asked the State to revisit the issue, pointing out that, just as polio victims suffer post-polio syndrome decades after they thought they were done with the sequelae of the infection, victims of Thalidomide enter new levels of suffering as they enter old age — for different reasons. 'When you have impairments due to the thalidomide drug, you're all the time compensating,' Jacqui pointed out. 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. Paying tribute to Jacqui, Irish Human Rights and Equality Commission chief Liam Herrick talked of mourning the loss of a 'colleague, advisor, and friend'. Her Thalidomide Association colleagues — 39 of them now left to continue the fight they shouldn't still be fighting — talk of losing a warrior. Her family will experience the loss differently: They grieve a family member, a beloved sister. The Taoiseach and Tánaiste — each of whom has at various times expressed understanding of the issue and a wish to solve the remaining problems — might honour the memory of Jacqui Browne by kicking life into an administrative process that's almost one sadly unproductive year in business this month.

‘A woman of conviction and compassion': Tributes paid to disability activist Jacqui Browne at funeral Mass
‘A woman of conviction and compassion': Tributes paid to disability activist Jacqui Browne at funeral Mass

Irish Times

time27-06-2025

  • General
  • Irish Times

‘A woman of conviction and compassion': Tributes paid to disability activist Jacqui Browne at funeral Mass

Disability activist and thalidomide survivor Jacqui Browne was 'a woman of conviction and compassion', mourners were told at her funeral Mass on Friday. Ms Browne, who was from Co Kerry, died peacefully at her home on Monday aged 63 . The funeral Mass took place at St John's Church, Tralee, with chief celebrant Fr Tadhg Fitzgerald remembering Ms Browne as 'an incredible campaigner', 'a woman of conviction and compassion' and a 'tireless worker for change'. Fr Fitzgerald told mourners that Ms Browne, whom he first met more than 25 years ago, was 'someone who stood up when it would have been easier to sit down, someone who spoke out when silence would have been more comfortable'. READ MORE Symbols of Ms Browne's life brought to the altar by members of her family included a sailing jacket, representing her love of the sea, nature and outdoors; a publication on the role of the Disabled Persons Organisations' Network in Ireland; and photographs of her 'beloved dog' Sandy and 'feline friend' Lorenzo. A guard of honour was formed by Irish Guide Dogs for the Blind and an Irish Sign Language interpreter was present for the Mass. Ms Browne is survived by her siblings Michélè (Clement), Donal J, Kevin and Sharon, nieces and nephew Gabrielle, Ciara, Sophie and Daniel, sister-in-law Lorna and brother-in-law Peter. Speaking to the congregation, Donal J Browne said learning the extent of his sister's legacy in the days since her death had 'really stunned' him and the rest of the family. Recalling his earliest memory of Jacqui, on the day she was born, Mr Browne said: 'I remember my late father's battered second-hand petrol green coloured Skoda pulled into the kerbside outside 10 Basin View, Tralee with a small Moses basket and little did we know what a storm was about to fall on us.' He added: 'At 4½ years of age I could feel the palpable excitement and joy at this little bundle coming into our lives. She certainly raised the bar for us every day of our lives.' Thalidomide was a medication introduced in the mid-1950s to counter morning sickness, but was withdrawn from most markets in 1961 after widespread evidence of it leading to birth defects. However, it remained on Irish shelves until 1964. The medication led to deformities and the deaths of thousands of babies across the world. Many children of women who took the drug in pregnancy were born without or with shortened limbs, with hearing and vision impairments and injuries to internal organs. Mourners heard how Ms Browne underwent several operations throughout her life due to the condition and became 'isolated' from her family at just five-year-old as a boarder at the Cabra School for the Deaf in Dublin. Despite her disability, the Mass heard, she 'engaged in every sport she could manage in school'. In later life, Ms Browne remained an active sailor, competing in the Clipper Round The World Race in 2010. 'Today is not a day to criticise the Government for its failures to the thalidomide community,' said Mr Browne, adding that 'Jacqui's crusade of more than 40 years and my parents' crusade of over 63 years' was not over. Mr Browne called on the Government to issue 'an apology and an acknowledgment' to survivors of thalidomide. He said a healthcare package for survivors was 'urgently required'. Mr Browne concluded by saying 'the truth will never die', which drew strong applause from the congregation. In an interview with The Irish Times last year, Ms Browne said that receiving a State apology would give her closure and 'take this big cloud off from over my head'.

Irish Thalidomide Association ‘devastated' by death of Jacqui Browne
Irish Thalidomide Association ‘devastated' by death of Jacqui Browne

Irish Times

time24-06-2025

  • Health
  • Irish Times

Irish Thalidomide Association ‘devastated' by death of Jacqui Browne

Jacqui Browne, a disability activist and thalidomide survivor, has died at the age of 63. Ms Browne, who was from Co Kerry, died peacefully at her home on Monday 'surrounded by her loving family' and a palliative care team. Ms Browne, who was born in November 1961, is predeceased by her parents Donal and Jean, and her brother-in-law Jean Paul Baro. She is survived by her siblings, nieces and nephews, and wider family. In her death notice , her family said they are 'heartbroken' by her passing. READ MORE Ms Browne will be reposing at the Gleasure Funeral Home in Tralee on Thursday from 6pm to 8pm. Her funeral Mass will take place at midday on Friday at St John's Church in Tralee. A spokeswoman for the Irish Thalidomide Association (ITA) said its members are 'devastated' by her death and 'grieving the loss of a great friend'. [ 'Physically there is so much I can't do': Thalidomide survivor Jacqui Browne believes the State is simply waiting for her to die ] Thalidomide was introduced in the mid-1950s to counter morning sickness but was withdrawn from most markets in 1961 after widespread evidence of it leading to birth defects. However, it was retained on the shelves in Ireland until 1964. The medication led to deformities and the deaths of 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. Members of the ITA have been campaigning for decades for a State apology for the immense toll thalidomide has had on their lives. Ms Browne, who worked as a disability equality consultant for more than 35 years, underwent several operations throughout her life due to the condition. In an interview with The Irish Times last year , she said that receiving a State apology would give her 'closure' and 'take this big cloud off from over my head'.

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