Carly Jensen says she is lucky to feel like a pretty normal woman most of the time, at least until she has to prepare for her National Disability Insurance Scheme planning meeting.
It's a process she says many people with disabilities find stressful and adversarial.
"We get really upset when the NDIS meetings come up because of the pulling down," the Gerogery resident said.
NDIS planning meetings happen at the end of each NDIS participant's care plan period, which can be from 12 months to three years. Participants undergo a series of questions in order to develop a support plan. A family member is often also interviewed.
"What we are trying to get the NDIS to do is say, 'Hey it's really, really good you are doing so well in the last 12 months, let's keep it going'," Ms Jensen said.
She was born with cerebral palsy and a hole in her heart.
At just six weeks of age she had a stroke and spent the first three months of her life in hospital.
Despite the rocky start, that hasn't stopped her living a full life and she refuses to be pigeon-holed by her disability.
"I have grown up with parents who have tried to make me as normal as possible.
"The only thing that people can see is that my right arm is two inches shorter than my left arm and same as the leg — that's it."
But despite this positive outlook, the anxious speed humps the NDIS planning process throws up for her and her family remain.
She's now eager to highlight the struggle she faces through a three-part skit being performed for the Albury community as part of a Telling Stories for Change event.
Her story, along with others from the local disability community, will be recorded and submitted to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability.
Ms Jensen said she and six others who would be sharing stories about their lived experience of disability in the local community were eager for their voices to be heard.
"A lot of disability participants that I hang around with are finding that people aren't treating them normally," she said.
It's also an opportunity to tell their stories to policymakers.
"What we are hoping is the royal commission will find in this region there's lots of things that we are wanting," she said.
"Disabled people find transport quite ridiculously annoying.
"Some of them can't hear, some of them can't speak, and we are just putting our stories out there to show the royal commission what we need in this area."
Building an alliance and understanding
This is My Brave Australia executive officer Tim Daly said the event was a creative yet important way for the border region's disabled residents to share their concerns.
"Unless the commission talks directly to the people who the things are happening to out there in the real world, they don't know," he said.
"So it's really important those people tell their lived stories directly to the commission.
"It's the only way that the commission is going to find out what negative things are affecting people with a disability in the community. "
He said the NDIS and the anxiety it created was a major theme cropping up in submissions.
It's not just the royal commission that Mr Daly wants to hear these stories of difficulties and hard-earned triumph.
"We just want people from the local community to come along and listen to these stories because that's a part of building support for people with disabilities, that other people know what's going on in their own communities with people with disability.
"Maybe they can do things to change that environment for people with disabilities in their own community."
The Telling Stories for Change event will be held May, 22 at 5.30pm at the City Central Church Auditorium, Albury.
