A smiling woman with facial difference stands outdoors.

Ellen Fraser-Barbour is being remembered for her disability advocacy in South Australia. (Supplied)

South Australian disability advocate Ellen Fraser-Barbour is being remembered for being “a fierce and defiant force” who will leave a “long-lasting legacy”.

Dr Fraser-Barbour drowned at Ellery Creek Big Hole, an hour west of Alice Springs, despite bystanders and paramedics trying to resuscitate her on Sunday afternoon.

The deafblind and autistic 35-year-old was known as a passionate disability advocate who loved travelling and hiking.

Dr Fraser-Barbour’s sister Harriet shared the impact on her family and the community in a statement to the ABC.

“Ellen was a fierce and defiant force who made a lasting impact on all that she encountered,” she said.

“We cannot describe the hole she will leave in our family and will missed greatly by her community.

“She was an amazing friend to many and wise beyond her years with so much left to give.

“Ellen helped to shape so much of who I am today and I will not be the same without her.”

Two smiling, dark-haired women, one with facial difference, in front of a disability strategy backdrop.

Sam Paior said she and Ellen Fraser-Barbour discussed issues that really mattered. (Supplied)

Sam Paior, founder of disability advocacy service The Growing Space, said she first met Dr Fraser-Barbour when she was 19 years old, when the latter applied to volunteer for SA’s Dignity for Disability Party in 2011.

“Just before COVID and all through COVID we spent a lot of time together, when we started hiking together on the trails,” Ms Paior said.

“I don’t think that there’s almost any area of disability related advocacy that Ellen hasn’t touched and had a positive influence, with incredible power, in our state.

“I don’t think the world could ever know an advocate that worked quite in the way she did. She was extraordinary.”

Dr Fraser-Barbour received her PhD from Flinders University in 2024. Ms Paoir said her research sought to improve safety and respect for people living in group home arrangements by centring their voices and experiences.

She also shared her experience with ableism with the ABC and appeared on the ABC’s You Can’t Ask That program, speaking about her lived experience with facial difference.

Dr Fraser-Barbour was a policy and research leader with advocacy group JFA Purple Orange. Its interim chief executive, Tracey Wallace, said she had made “an incredible impact” during the five years she worked for the organisation.

“Dr Ellen used her strong research and advocacy skills developed in completing her PhD on safety, belonging and agency in shared disability accommodation to make a significant contribution in many important policy areas,” she said.

Dr Fraser-Barbour hosted JFA Purple Orange’s first Disability Election Forum for the South Australian 2026 election.

Ms Wallace said Dr Fraser-Barbour was “front and centre” for the success of the landmark event and her work would leave a “long-lasting legacy” in the community.

A dark-haired woman with facial difference wears a zipped-up jumper while sitting in front of a hedge.

Ellen Fraser-Barbour contributed to disability policies. (ABC News: Patrick Martin)

Former SA Human Services Minister Nat Cook described Dr Fraser-Barbour as a “fearless” advocate and noted her work on the inaugural Ministerial Disability Advisory Council.

“She was a clear stand-out and force of nature when it came to being able to articulate some of the challenges that people with disability were facing in the community,” Ms Cook said.

“The conversations I had with Ellen were always about trying to raise that awareness that community can do better.”

Two smiling women on a bushy slope.

Sam Paior often went hiking with Ellen Fraser-Barbour. (Supplied)

Ms Paior described Dr Fraser-Barbour as a “deep thinker” who enjoyed staying fit and getting out in nature.

“She really took the fitness bull by the horns, joined a gym as well, [did] a lot of strength work and all sorts of stuff,” she said.

“We had such intense discussion, you know — you didn’t catch up with Ellen to talk about the weather or some fluffy TV show.

“You talked about things that really mattered.”

A Northern Territory police spokesperson said on Monday that she had been with friends at the popular tourist spot.

“Next of kin have been notified and at this stage the cause of death is believed to be drowning, however an autopsy has not yet been completed,” they said.