TOOWOOMBA mother Toni Mitchell fronted the Disability Royal Commission gripping the hand of her son Joshy, and explained how she had to justify her son’s life – even before he was born.
“It’s highly likely that your son has Down syndrome,” Ms Mitchell was told by a medical staffer during a prenatal screening.
“People were murmuring and I was still crying, and then finally he turned around said, ‘Here’s your appointment for a termination’, gave me a piece of paper and walked out,” Ms Mitchell, a single mum, told the royal commission, holding back tears.
“It set the whole tone for Joshy’s life because in that moment, they completely disallowed his life. They said he wasn’t worth living.”
Despite being encouraged to abort her son’s life, Ms Mitchell said she had never considered it.
Today, Joshy is 19 years old and lives with multiple disabilities including Down syndrome, autism, hearing and vision impairment, congenital heart disease, and degenerative lung disease.
He has spent a lot of time in hospital and had 54 operations.
He struggles every day with immense pain due to a septic infection that almost killed him in 2014.
And yet Joshy’s daily struggle has a purpose driven by his love for life.
“He has a spirit determined to live and to see the beauty in every day,” Ms Mitchell posted on the website Sunshine Butterflies.
“Joshy is a generous, genuine, loving, caring boy.
“He is open and honest, and welcoming to each and every person he meets.
“He has been home-schooled, can read and add up.
“He loves to go horseriding and spend time with his pets.
“He loves motorbikes. He loves going to church and serving as an altar boy.
“His most favourite thing to do is to see bands perform live.”
The Disability Royal Commission has been set up by the Federal Government to enquire into violence, abuse, neglect and the exploitation of people with disability.
Inclusion Australia chief executive officer Catherine McAlpine said the health inequality, the number of preventable deaths and the lower life expectancy for people with intellectual disability had been “known for decades”.
“Treating people with intellectual disability as agents of their own lives, treating people with intellectual disability as valued members of the community who deserve the same health care as everyone else … these things should just happen as a matter of course,” Ms McAlpine told ABC radio.
Ms Mitchell’s testimony at the third public hearing held in western Sydney this month has been one of many to shine a light on the challenges of getting treatment for complex medical conditions, and navigating Australia’s health system.
She said it “was very empowering to be heard” and to have officials take seriously issues she’d been trying to raise for years.
“They need to see that you don’t need to be perfect. Disability is okay,” she said after giving testimony.
“Personally I love the way Joshy looks at life.
“I love his acceptance of life.
“I love the way that he looks at the world around him.”