Finding Gayle

IN outback NSW, Gayle Kennedy was the first in her family of six children. In 1957 she was diagnosed with polio and taken away for treatment. Vaccination programs didn't reach Aboriginal children, so she spent three years in a distant hospital.

At that stage of Australian life, Aboriginal people couldn't travel without "dog tags" or permission to travel from the cattle stations where they lived and worked. Her family was unable to visit.

There were no other black people in the hospital, so Gayle saw herself in the white world she inhabited. She was so young she didn't even know she had a mother and father.

Eventually two black people turned up and took her for an 18 hour train ride. She screamed for the first nine hours, then found the man and the woman were loving and kind, they weren't going to hurt her. She thought they were from Mars, but no, they were from Ivanhoe in the middle of a red dirt desert (as red as Mars) in a community of tents, dogs and kids. For her return her father bought a caravan and painted it beautifully inside with flowers. She began to settle down, but 12 months later she had to go back to the Far West Home at Manly on Sydney's northern beaches for treatment. This happened every year until she was 14. It was no seaside resort, surrounded by high green concrete walls.

The Kennedys had christened her Beryl Gayle. At the Far West Home, Beryl being her first name, she was known as Beryl. At home, where-ever her parents happened to be, she was called Gayle. So she was Beryl in the white community and Gayle in the black community - this became her way of dealing with two lives.

"I was as alien to them as they were to me," Gayle told the polio conference yesterday afternoon in a five star hotel in Sydney.

At 17, she left home and didn't go back until she realised she needed to get to know her culture and her family that had an unbroken line back to full blooded tribal people. On return she set up a Land Council and a housing project, returning regularly until intense fatigue made it impossible for her travel.

"It took years to find that post polio syndrome existed", Gayle said, echoing that common experience to her listeners.

"I found it difficult to explain to aboriginal people why I had no energy to travel, even to important funerals. They didn't understand, being so marginalised that disability is a long way down the scale of disadvantage. No-one even wanted to help me, I needed a special car for the wheelchair and help to get in and out of it".

Gayle has come to terms not only with Post Polio Syndrome but the core aspect of her life. It took years to get on a list to receive services and she still doesn't know if there were other Aboriginal people who suffered like her. (After years of wondering, Polio Australia knew of one other who died some time ago however).

Gayle started to write about her journey. In Scotland a nurse from the Far West Home read a story in Readers Digest "scourge of waiting rooms", Gayle quipped. The nurse wondered if it was "her Gayle". On return to Australia she tracked down Gayle who took the old friend to meet her parents (nursing staff often became lifelong friends). The Kennedys were so moved to find that someone else loved their daughter as much as they did.

At this point of the talk, Gayle who had left her reading glasses behind and was speaking off the cuff, could talk no more. She handed up the microphone and reversed her wheelchair to let tears flow. "That always gets me," she commented.

Gayle Kennedy has received a literature grant and is planning to write an account of her polio experience - from her point of view and that of her parents. Two major publishers have expressed interest.

At this Life Stage Matters conference much has been said about pain, acute and chronic. Much of Gayle's story resonates among those attending and others around the world. But this is one story that has taken many years to emerge and the pain is raw.