Real Life

Inspired by my secret brother

For years, charity campaigner Julie Bartlett had vague memories of a baby that disappeared. She recalled a nursery being prepared for the new arrival and her mother having a bump. Then one day, the bump was gone, but no baby arrived. When Julie, then just six years old, asked what had happened to her new brother orsister, she was told the baby had simply “gone away”.

Now 58, Julie had to wait until she was 18 to find out that the baby, a boy called Ross, had Down syndrome, andthat immediately after his birth he was sent to an institution for disabled people, 500km away.

All that time, her parents had been visiting Ross at the Levin Farm and oental Deficiency Colony (as it was called then, before being renamed Kimberley Hospital) where the little boy was one of hundreds of patients. But Ross and Julie were finally able to meet when she was 18 and he was allowed to visit the family home.

“To the day she died, I don’t think my mum resolved the grief,” says Julie.

Sending a disabled child to an institution wasn’t uncommon half a century ago when Ross was born. Parents would be told their child was “defective” and needed to be removed from the community.

Julie says she was stunned when she finally met the brother who’d been a family secret for so long. “It was a big surprise to me because he was a cool guy.

I was very pleasantly surprised,” she says. “I also went to visit him at the hospital to see him in his environment. But it was shocking. It was an institution where all sorts of people who were not accepted in mainstream society stayed.”

It wasn’t until Julie returned from her oE in her twenties and Ross came to live in Auckland that the siblings grew close.

When she got married in 1999, Julie didn’t hesitate to ask Ross to give her away – and it was a decision that was to change her life and those of many disabled kids all over New Zealand. Watching her friends’ attitudes change towards Ross after he delivered a speech at her wedding was the catalyst for her to launch StarJam- a charity that gives intellectually handicapped people a chance to take part in shows and to meet celebrities.

“When Ross gave that speech, it was a huge turning point in my life. I thought it was a big day because I was getting married to Roy, but it was significant in other ways too,” she says.

“Ross was so reluctant to give me away, when the celebrant asked if he was prepared to do it, he shook his head. Maybe he thought he was going to lose me or would be sent back to Levin. Then he gave an impromptu speech and it was so moving – when I looked around, everyone was in tears.

“After that, people started treating Ross like a real person, and seeing their attitudes’ change so quickly led to me starting StarJam. I thought if my friends’ attitudes can change so quickly, then so can others’.

So StarJam creates a platform for public opportunities where people could see that young people with disabilities have a lot to contribute.”

From its humble beginnings, StarJam has reached over 500 young people, and 16 children are involved withthe programme.

Ross now lives in an IHC house in Auckland with three flatmates.

Although Julie feels sad about the years she missed with Ross, she’s glad it’s ended up helping disabled childrenwho in the past would have simply been hidden away. “Things have a way of working out,” says Julie. “Maybe if Ross had grown up with me, I might not have started StarJam.”

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