‘I ask you to live by your abilities and not by your disabilities’

THE newly appointed CEO of Spina Bifida Hydrocephalus Ireland has this week called on people to live by their abilities, not their disabilities.

Gerry Maguire was speaking ahead of Spina Bifida Hydrocephalus Awareness Week 2021, which takes place nationwide until October 31.

The theme of this year’s Awareness Week, A Little Support, focuses on what individuals living with spina bifida and/or hydrocephalus can achieve with just ‘a little support’.

This support can be from a friend, family member, organisation such as Spina Bifida Hydrocephalus Ireland (SBHI) or society.

Reared and still living in Ballyfermot, Gerry, who was born with spina bifida, spoke of how support from his parents enabled him to live a fulfilled life.

“When I was born, my parents were told that I had spina bifida, and that they should put me in a home and go and enjoy their three other children,” Gerry said.

“Thankfully, they didn’t, and they set about ensuring that I would live a full, independent life with no boundary on my potential.”

Gerry, who previously served as Political Advisor to former Minister for Disabilities, Finian McGrath was appointed CEO of SBHI in July – and is based in the charity’s national resource centre in Clondalkin.

SBHI day activities

During national awareness week, Gerry is calling on people with spina bifida or hydrocephalus to live by their abilities.

“My message to you this week is simple,” Gerry said.

“I ask that you live by your abilities and not your disabilities, that you strive to fulfil your potential in life, and that you remember, that if you ever need a little support along the way, that we at Spina Bifida Hydrocephalus Ireland are here to help you realise and achieve your full potential.”

As he embarks on his new role as CEO of SBHI, Gerry told The Echo: “If I take myself as an example.

“I’m a wheelchair user but I’m not just a wheelchair user, I’m a person who uses a wheelchair.

“I have achieved an awful lot in my life and that’s because of my abilities, not my disabilities.”

Speaking with The Echo, Gerry described himself as a ‘late starter’ with SBHI, connecting with the charity some 14 years ago when in his forties.

“I had written a book about my life and the then CEO of SBHI asked me to do a talk and I’ve been involved ever since,” he said.

Alongside providing a family support service, education, training, a day service, advice, lobbying and more, SBHI also provides respite and recreation, which in recent weeks has resumed within health guidelines.

“Having spina bifida or hydrocephalus is not easy, it can bring a lot of hassles including isolation,” Gerry said.

“Everyone has been so happy to be out and about again.”

Gerry hopes that the week also raises awareness of SBHI and its services and encourages any individuals or families in need of support to get in touch.

He also raised awareness of how SBHI, which has branches nationwide, is dependent on the goodwill of the public to provide services to its members.

Spina bifida, which causes incomplete development of the spinal cord, affects around one in every 1,000 children born in Ireland each year.

According to SBHI, it is common for spina bifida and hydrocephalus, a condition where too much cerebrospinal fluid builds pressure in the brain, to be experienced at the same time from birth.

In Ireland, 64 per cent of those living with spina bifida also have hydrocephalus.

To learn more about SBHI or to give ‘a little support’ visit the SBHI website HERE