In this episode of Disability Matters, host John Comiskey sat down with Gerry Maguire, the CEO of Spina Bifida and Hydrocephalus Ireland (SBHI), for a wide-ranging discussion about the realities of living with these conditions, the work of the organisation, and the urgent need for both societal change and state support.
Gerry, who has lived experience of Spina Bifida himself, joined SBHI in 2021 after a long career in the civil service and as a political advisor. As he describes it, his move into the non-profit sector was a shift from “gamekeeper to poacher”—from listening to requests for support to being the one advocating for those needs. “It gives me an edge,” he says. “I know how the system works.”
Living with Spina Bifida and Hydrocephalus
Hydrocephalus, Gerry explained, is an invisible condition caused by the buildup of cerebrospinal fluid in the brain, which often requires surgical intervention with shunts. These shunts can bring complications and need frequent replacements. Spina Bifida, on the other hand, is more visibly disabling. Gerry spoke candidly about his own journey—from wearing calipers as a child, to using a walking stick, to eventually becoming a full-time wheelchair user following an accident.
But the physical aspects are only part of the picture. “Nobody tells you how to deal with the psychological side of disability,” he says. Gerry shared the emotional toll of living with Spina Bifida, the stigma, and the importance of mental health support. Under his leadership, SBHI has placed a renewed emphasis on providing psychological services and is actively seeking funding to offer full-time counselling.
Empowerment Through Independence
SBHI represents around 1,000 people in Ireland who live with Spina Bifida, Hydrocephalus, or both. Gerry’s mission is simple: empower members to live independently and with dignity. He recounts how his own parents were advised to institutionalise him at birth, advice they thankfully ignored. Instead, they asked, “How can we help our son lead an independent life?”
Gerry highlighted the central importance of independent living: “Independence is key because independence empowers people, and that’s what we want. We want people to see they have disabilities, but they have a gazillion abilities, and that’s what we want to get across to them.”
Today, Gerry lives alone, has enjoyed a full professional career, and leads SBHI with a deep sense of purpose. “The only person who can tell you what you can’t do is you,” he tells members. “When you’re born with Spina Bifida, you’re born with one other thing and that’s potential.”
The Work of SBHI
Founded in 1968 by parents seeking support for their children, SBHI has grown to offer a range of services: family support, education and training advice, respite care, and day services for school leavers and adults. Despite this, Gerry is frustrated by the inadequate state funding.
“Last year, the Irish government gave €19 million to the Greyhound Board. We get significantly less for essential services. What does that say about our priorities?” he asks.
SBHI also fundraises tirelessly, with upcoming events such as a golf classic at Palmerstown House and a selection of merchandise available on their website. Every cent, Gerry assures, goes directly to supporting members.
Research and Representation
One area where SBHI is playing catch-up is research. Despite Ireland having one of the highest rates of Spina Bifida in Europe, little is known about the underlying causes. “We need answers,” Gerry insists. “We’re working with universities and the International Federation of Spina Bifida and Hydrocephalus, but we need proper state support.”
Importantly, Gerry is pushing back against some of the language used in public discourse. “We’re not here to eliminate conditions. That implies people with them are inferior. We’re here to prevent, support, and empower.”
A Message to Families
To any parent receiving a new diagnosis for their child, Gerry has one clear message: don’t panic, and don’t feel alone. “Stay away from Google. Contact us. SBHI will walk this journey with you from cradle to grave.”
Changing Mindsets
Gerry closed the conversation with a powerful reflection: “We can pass conventions and talk about quotas, but what we need most is a change in mindset. When you see somebody in a wheelchair, don’t look at the wheelchair. Look at the person. When you see somebody with a white cane going down the street or with a guide dog, don’t look at them. Look at the person. Because what it is, a disability is only part of that person. It doesn’t define them completely.”
Contact SBHI
For support, information, or to get involved, visit www.sbhi.ie. You’ll find full contact details for staff, family liaison officers, and fundraising opportunities.
Gerry Maguire’s passionate advocacy reminds us all that true progress isn’t about pity—it’s about empowerment, respect, and dignity for everyone.
Disability Matters airs every Thursday at 4PM on Phoenix 92.5FM, with repeats on Monday at 3PM and Tuesday at 7AM & 3PM. Podcast available after each show on Mixcloud and on bcil.ie/radio.