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

Despite being impacted by thalidomide and having 35 operations in her lifetime, Jacqui Browne was an avid sailor and disability rights activist

Jacqui Browne (1961-2025), who was born with impaired hands and forearms, bilateral hearing loss and a speech impairment
Jacqui Browne (1961-2025), who was born with impaired hands and forearms, bilateral hearing loss and a speech impairment

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.

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Browne was born in November 1961, the same year and month that thalidomide was withdrawn from global markets.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 MassOpens 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
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 GovernmentOpens 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.