A true warrior: Leigh Gath fulfilled her mantra by living life to the full
Leigh Gath was born with impaired arms and legs caused by thalidomide, which was prescribed for morning sickness in pregnant woman. Picture: Brian Arthur
When “courageous” disability advocate Leigh Gath died suddenly last month, she left behind great sadness but also significant reforms for the disability community.
Deep affection for Leigh was clear during the funeral in her beloved Pallaskenry, Co Limerick.
While the option of watching online was available, people packed the church, many using wheelchairs, on crutches or walkers.
From protesting outside government buildings to sitting with ministers to tease out complex legislation to working with the HSE, she was never shy about coming forward.
Leigh was born in Newry, in 1962, a thalidomide survivor born with impaired arms and legs caused by that drug prescribed for morning sickness in pregnant woman.
She later lived in Texas and then Limerick for almost 20 years.
Well-known in the disability world since her teens, she came to national attention in 2012 when she organised a protest against cuts in funding for personal assistants outside government buildings in Dublin.
“Without a personal assistance service, disabled people like myself have two choices: Stay at home without even being able to out of bed or become institutionalised.
“Neither choice is acceptable,” she said beforehand.
She was angry on her own behalf but also for the many “very frightened disabled people” she knew.
“They must stop punishing people with disabilities because disability is not a crime,” she urged.
Her successful intervention led to a reversal of the cuts.
Elaine Teague, Disability Federation of Ireland (DFI) ceo, described Leigh as “a groundbreaking influence and role model” for anyone.
“She continued, right up until her passing to work for equality for disabled people,” she said.
“Leigh was a courageous advocate in her role as the first confidential recipient in Ireland, she demanded that residential health and social care services upheld the human rights of disabled people.”
This position was created in 2014 by the HSE in the aftermath of a shocking RTÉ undercover report on abusive conditions at Aras Attracta disability centre.
“I’m not easily intimidated,” she told reporters when her appointment was announced by then HSE head Tony O’ Brien.
Her annual reports reflected her frustrations at the limits placed on the lives of people with disabilities and reforms she helped bring about.
Social worker Celine O’Connor summed her approach in an online tribute, saying: “There was no stronger advocate to have. A phone call or email from Leigh and problems could be resolved. RIP a true warrior woman.”
Ms Teague said even after Leigh stepped down in 2022 she continued advocating.
“She swiftly recognised the many access issues around Re-Turn deposit return scheme for people with disabilities,” she said.
“In response to lobbying a consultation process was established and she represented DFI on it.”
Leigh had described the recycling scheme as “a stealth tax” on people with disabilities.
Ms Teague added: “She leaves an enormous legacy of advocacy work bringing about much needed change in the lives of disabled people.
"She will be hugely missed.”
Leigh had also survived bouts of thyroid and breast cancer. She was also run over twice while in her wheelchair including being seriously injured when crossing the road in Limerick in January 2019.
Finola Cassidy, Irish Thalidomide Association spokesperson, said this really struck people.
“I’m in awe of her ability to find the strength to campaign, it’s not easy, it’s always a long road,” she said.
“And for her to have done it continuously throughout her personal battle for cancer, was just — she set the benchmark.”
Ms Cassidy described her as “an inspirational advocate” for anyone.
Having been born in Northern Ireland, Leigh’s involvement with supports for thalidomide survivors was through Britain, but her husband, Dr Eugene Gath, was in the Irish system.
“As a thalidomide survivor herself from the UK system, her supports and understanding of what was required by the Irish survivors was so helpful,” Ms Cassidy said.
“She would have supported Eugene in all the years he has been part of our campaign.”
Her bereaved husband gave a moving eulogy, describing her early advocacy as a teen, to increase the number of wheelchair ramps on the streets of Newry, to chuckles from the congregation.
He told how they met online through a thalidomide support group.
He was in Ireland and Leigh was working and studying in Texas with her children Aisling and Karl having separated from her first husband.
At first he spent time with them in Texas, including during a sabbatical from lecturing in mathematics at the University of Limerick, then they all moved together to Pallaskenry in 2006
She was extremely proud of her children and often shared updates on their achievements while speaking to journalists.
As confidential recipient, she worked with and butted heads against the HSE as more issues were reported to her.
HSE chief clinical officer Dr Colm Henry said he was “saddened” at her sudden passing.
“Leigh was a passionate patient advocate and disability campaigner,” he shared online.
HSE chief Bernard Gloster said he was “privileged” to know her, professionally and personally.
“She achieved many great things and always for the benefit of others,” he said in a public statement.
“She gave a voice to many who otherwise were silent, and she challenged all professionals and organisations and Governments to think differently.”
Just last year she took on reforms of the tax system for vehicles modified for people with disabilities.
Leigh, like some of her peers, had to import a modified van from Britain as no Irish companies do this, and faced a Vat bill of €23,372 as a result.
It took months but she worked with the Department of Finance — or wore them down as she put it — until agreement was reached on new reliefs under the Disabled Drivers and Disabled Passengers Scheme with then finance minister Micheal McGrath.
He also praised Leigh for “her tireless work advocating for people living with disability”.
Her coffin was carried out of the church to the tune of ‘When the saints go marching in’, accompanied by trumpet music and applause.
But really the final word can only go to Leigh, as she said in her autobiography .
"If one were to dwell on the negative side of life, then an opportunity would be wasted to take every opportunity that life gives, the opportunity to live every day to the full."
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