Matthew Potocnik has faith in the power of art to stir empathy and promote understanding.
The Brunswick resident's experiences as a father and disability advocate have shaped his recent work, a maquette (or small scale model) he calls, "The Gatekeeper".
It is a complex and harrowing piece, attempting to convey how bureaucracy can affect the family of a child with a disability.
Among the features are a Dattesque weeping eye, a belt of keys and a vague formless face Potocnik says represents how accountability can be lost. The "sea-urchin face" he says, is "almost like a Vietnamese fish trap, where you can swim in, but you can't swim out There is also an innocent child clutching a key triumphantly - a concession to hope.
Potocnik wants a commission to built the statue at the Victorian Equal Opportunity and Human Rights Commission in Lygon Street. He says it would remind visitors of the lives affected by disability, lives sometimes forgotten.
It is days after Potocnik's 50th birthday, eleven years ago, he celebrated the day by bringing his son Levi home from the hospital.
Levi was born with Angelman Syndrome. He can't walk or talk and experiences seizures and sleep disruptions. He requires constant care.
Potocnik says his son communicates with his eyes and through smiles. "Our son is the epitome of cheeky innocence; he has such a lot of character".
"His condition means he is a very happy and giggly small child. When we can get help looking after him, the people love him."
For years Potocnik and his wife fought to secure regular funding to support Levi. The couple attempted to juggle work,- caring for their son and going through the stress of having to reapply for assistance regularly.
Last year the pressure took its toll on the family; funding couldn't be found, the couple's health failed and both were hospitalised. For six weeks Levi was placed in emergency care.
"The government policies sound really good, but they are under resourced and under supported," he says.
"When people have to give up their child because they can't get support - that is a disgrace."
The family recently won funding from the Department of Human Services through an individual Support Package.
The family contributed to a report by the Victorian Equal Opportunity and Hurnans Right Commission, and Potocnik unveiled his sculpture at the report's launch this year.
He hopes his art helps people understand that difference has a place in the community.
"I want my art to educate people in the broader community about human tights, the function of bureaucracy and the empowerment of the individual."
Pictures of the "GATEKEEPER" - LINK
LISA Comment: Matthew has, in his various roles, been a fighter for people with disabilities for many years.
Like most of us, he has beaten his head against the bloody minded bureaucratic barriers to common sense.
We believe his "Gatekeeper", outside DHS HO Victoria, is to depict the department's despotic gatekeeping attitude towards people with disabilities and their families ...
This is the bureaucratic "power over people in a captive market" which the DHS wield over the lives of vulnerable people - people with disabilities and their families.
Comment: There is a dire need for a Royal Commission to investigate disability service provision in the State of Victoria. The bureaucracy, which has to be fought and negotiated with in order to procure an already promised ISP, is deceitful and damaging to families who are already suffering emotional and financial hardship.