02.08.2019

A long road to get where we are today

When Basil and Fay Williams welcomed their baby boy, John, into the world in the 1950s they were bluntly told that he was disabled and there was nothing anyone could do to help them.

 

It’s hard to imagine this being the way people looked at disability at that time, but John Williams’ story is a reminder to us all about how far we have come and how much potential there still exists to improve the lives of people with disability.

John was the third child to be born to Basil and Fay and, from an early age, it became obvious that John’s development was moving at a slower pace than his two siblings. The concerned parents took John to see several pediatricians in Melbourne, but no one could tell them exactly what was going on, let alone give them a name for John’s disability.

Amid the frustration of not knowing what was affecting their son there were still plenty of bright and happy times in his childhood. As a toddler, John fell in love with music and Basil and Fay remember him responding to Harry Belafonte’s ‘The Banana Boat Song’. His love for music continued as he grew, and he even taught himself to play tunes on the piano.

When John turned six he began attending the Lady Byrnes Centre in Swan Hill, then operating out of the Drill Hall in Gray Street. Basil and Fay both became actively involved in the organisation as well, with Basil serving as President from 1966 to 1972.

After Basil passed away in 1979, Fay continued her involvement, taking on the Presidency from 1989 to 1992. “The whole district took the Lady Byrnes Centre into their hearts and were very generous.”

John’s condition was finally diagnosed when Fay’s grandson was born and showed similar signs of delayed development. Genetic testing showed the presence of a disorder known as Fragile X Syndrome. The genetic condition causes anxiety, hyperactive behaviour, and delays in speech.

John now lives in independent accommodation in Swan Hill. He looks forward to his visits with his mum, enjoying a meal of her delicious bacon and egg pies, and his chats with his loving siblings Tamara, Tim, Andrew and Bronwyn, who are always there for him.

“It was a very long road to get where we are today, we had lots of ups and downs” says Fay.

John actively participates in a range of Vivid Living programs in Swan Hill – he especially loves mosaic and music.

 

This story is an excerpt from Our Vivid History, a collection of stories celebrating over 50 years of our organisation. If you would like to pre-order a copy of the book, please click below.

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