Obituaries

Leigh Gath obituary: A thalidomide survivor who became a tireless advocate for people with disabilities

At a meeting at Newry County Council when she thought she wasn’t been heard, she climbed on a table and banged on it until she had people’s attention

Leigh Gath: in 2012 she was one of a group of campaigners who forced a government climbdown on disability cuts after camping out in front of the Dáil overnight
Sat Aug 10 2024 - 05:00

Born Born: April 7th, 1962

Died July 27th, 2024

Leigh Gath, a fearless and outspoken campaigner for equal rights and equal access for people with disabilities, has died unexpectedly at her home in Co Limerick.

The 62-year-old Newry-born activist was appointed the HSE’s first confidential recipient in late 2014, following the abuse scandal in the HSE-run Áras Attracta centre for adults with intellectual disabilities in Swinford, Co Mayo. Her job involved the examination of concerns and complaints relating to HSE-funded services for people with a disability and older people.

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During her eight years in the post, she dealt with numerous allegations of abuse, negligence, mistreatment and poor care practices brought to her attention by staff or service users. She also challenged the HSE to develop much more robust structures and processes to protect people who experience vulnerabilities in their lives.

Gath was born with shortened arms and legs, due to the side effects of the drug thalidomide, which was taken by women to reduce morning sickness during pregnancy in the early 1960s. The drug was later withdrawn from the market.

Bernard Gloster, chief executive of the HSE, knew Gath professionally and personally over several years. “Leigh was never defined by her own disability. She achieved many great things and always for the benefit of others. She gave a voice to many who otherwise were silent and she challenged all professionals and organisations and governments to think differently.

“When the serious work was done for a day, she was always great fun to bump into and would lift the mood of those who encountered her.”

Disability activist James Cawley jnr said Gath was “never afraid to challenge, question or lead difficult conversations when they needed to happen. “As she wheeled into any room with her distinct accent and authority, you immediately listened, discussed and debated the next barrier to remove for our community.”

Gath, who wrote Don’t Tell Me I Can’t: The Triumphant Story of a Thalidomide Survivor (2011), was “a fighter” from an early age. She was baptised Leontia (in her early twenties, she changed her name first to Lee and later Leigh), the third of three daughters born to John Raphael Loy and Mary Loy (nee Chambers). Her father died when she was just two.

[ ‘She gave a voice to many’: Disability campaigner Leigh Gath dies ]

She grew up in College Gardens, Newry, Co Down, at the height of the Troubles. Never shy about her disability, she played on the street with the other children. She attended Fleming Fulton School, a progressive school for children with disabilities in Belfast, which she enjoyed.

As a young adult, she advocated for those who didn’t have the confidence to speak up for themselves. And in one memorable meeting at Newry County Council when she thought she wasn’t being heard, she managed to climb up on a table and banged on it until she had the undivided attention of all those present.

While still living in Newry, she also campaigned for accessible footpaths. Many locals will still recall how she accompanied her local MP, Enoch Powell down the centre of a busy street with cars passing on either side to show him the only way she could make it through the town with her wheelchair. The townspeople of Newry still credit her with the more accessible streets that were put in place soon afterwards.

In September 2012 she led a sleep-out outside the Department of the Taoiseach in Dublin to protest against cuts to personal assistance and home-help services for people with disabilities. And in an interview with the Medical Independent in 2022 about how the lack of personal assistance hours curtailed the independence of people with disabilities, she said, “it is extremely frustrating to see people getting services and supports that will allow them [only] an existence”.

“There is a reason why 75 per cent of my community is unemployed,” she said. “Because, how can you be employed if you need supports and you are only guaranteed someone to get you up in the morning when it suits them, not you? And to put you to bed at night when it suits them, not you?”

She said that in many parts of Ireland, the agencies that work for the HSE will not have their staff out late at night. “So adults are in bed by seven or eight o’clock at night against their wishes because there is nobody to put them to bed any later. If it was social care in the truest sense instead of the medical model ... and if it was genuinely letting people have a life instead of an existence, then the person would be assessed on the amount of hours they actually need in order to live. Not the amount of hours they need to exist.”

As well as contend with her congenital physical disabilities, Gath survived an incident when she was knocked down crossing the road

In 1991 she married her first husband, and the couple lived first in Warrenpoint before moving to live in Austin, Texas, with their young son, Karl. Their daughter, Aisling, was born after their move but the marriage didn’t last. Following their divorce in the late 1990s, she remained in Texas, working in various jobs while continuing her activism (including a protest on delays to the Americans with Disabilities Act outside the house of the then governor of Texas, George W Bush) and looking after her young children.

Her friend from Texas, Nancy Worst, a single mother, says Leigh was an inspiration to her. “She was quick-witted, mischievous and generous. Just as I felt it was all too much, Leigh would come buzzing along in her wheelchair with Karl hanging on the back and Aisling on her lap.”

In 2003 Leigh found love again when she met Irish man Eugene Gath through an online forum. He subsequently moved to Texas and the couple married first in the United States in 2004 followed by a second wedding celebration back in Ireland. The family returned to live in Pallaskenry in Co Limerick in 2006 and Gath became involved in disability issues in the Republic for the first time.

Eugene, also a thalidomide survivor, said Leigh was full of life. “She loved life. She was one in a million kind of person. She never missed the chance to make someone feel celebrated and loved.”

As well as contend with her congenital physical disabilities, Gath survived an incident when she was knocked down crossing the road. She also recovered from two different forms of cancer. But throughout all these setbacks, she remained resilient and forward looking.

In her personal life, she loved music, dancing, reading, painting and travel. “Cruising was a big part of her life,” Eugene said. “She loved driving to the UK to join the cruise ship.”

Gath remained active in disability issues following her retirement in 2022. She suggested that when the six regional health departments were fully set up, there should be confidential recipients managing formal complaints for each region rather than one confidential recipient covering the whole country. At the time of her death, she was writing a sequel to her earlier autobiography, chronicling events of her later years, which her family hopes to publish sometime in the future.

Leigh Gath is survived by her husband, Eugene; her son, Karl; her daughter, Aisling; and her sister, Phyllis. She was predeceased by her sister, Anne.