Estella brings strength and resilience to her family as she navigates life with disability in remote NT

When 19-year-old Estella Jones is out and about in her hometown of Tennant Creek, there is one thing you do not do when stopping for a chat. 

"People have this weird thing where they need to pat, or touch like this," says Sam Cameron, Estella's guardian, who the teen calls mum.

She demonstrates by stroking Estella's arm, eliciting a disapproving look from her daughter.

It is a look that reflects the fighting spirit that led to Estella surviving against all odds when she was born prematurely with severe complications at Tennant Creek Hospital in 2006, resulting in her living with disability.

Amy James, who also lives with a disability in Tennant Creek, is good friends with Estella and often jumps to her defence. 

Bringing up Estella

Sam and her partner, Darrin Whatley, had recently moved from Adelaide to Tennant Creek and were healthcare workers at the hospital when Estella was born there.

When Estella was four, through an informal request from her grandmother, who did not have the resources to care for her grandchild, the couple agreed to help bring up Estella and stay in Tennant Creek.

The couple left their jobs at the hospital and started a local retail business so they could bring Estella to work with them.

Today, she is old enough to help by keeping an eye on the business's security camera monitors, which she looks at over her long, beautifully painted fingernails — thanks to Darrin, who often paints them for her.

The store also helps Estella, a Warumungu and Warlpiri woman, to keep in touch with her biological family members, who can call in for unscheduled visits. 

Though she is not able to join cultural ceremonies on country or to go foraging for bush tucker, Estella regularly attends community events, like the Desert Harmony Festival, NAIDOC Week and Barkly Regional Arts, where she also sees her family.

Care worker support

Amy, a Warumungu woman, and Estella often spend time together at The Paterson St Hub, a community centre in Tennant Creek with a disability focus.

Their favourite activity is to bake brownies under the guidance of hub coordinator Alba Brockie.

They also attend the regular karaoke night at the Tennant Creek Memorial Club.

Given the need for Estella to have a chaperone at all times, her care worker's support is key.

"So having a younger person able to take her out and introduce her to people closer to her age, in the same cohort, is awesome". 

Sam says the family is lucky to have a young carer to help take Estella out to socialise. However, it is the more complex care that Estella needs that is more challenging to find. 

Since the Tennant Creek NDIS office closed and moved to a co-share location with Services Australia, and reduced staffing to one person, Sam says acquiring the equipment and therapy for complex needs such as Estella's has been harder to access.

"So, what it looks like now is lots of paperwork, lots of assessments that we have to get done that we pay for through the NDIS," Sam says.

"But I think some of those costs could be slashed if we went back to having local offices and local people."

An inspiration

Sam says that Estella brings a tower of strength and resilience to their family unit.

"Watching Estella navigate her world with everything that has gone on with her makes her the greatest inspiration that I could have in my life," she says.

Asked what Estella would like, Sam says that besides a personal hairstylist, a manicurist and a shoe collection to rival Carrie Bradshaw's, it is really very simple.

And that's another thing both Estella and Amy agree on.

This article was commissioned as part of the ABC's coverage and recognition of International Day of People with Disability.