SINGAPORE: Doctor Ellen Fraser-Barbour was a “gutsy” and fierce advocate for people living with disabilities, but was also “fun” and “silly” and loved by all who knew her.

Ellen was holidaying with her close friend in the Northern Territory, having just celebrated her 35th birthday last week, when she tragically drowned at Ellery Creek Big Hole, near Alice Springs, on Sunday.

Ellen was deafblind which led her to her dogged and dedicated activism work in the sector.

She touched the hearts of all who crossed her path.

In a statement on behalf of the family, Ellen’s twin sister Harriet said she will be missed dearly, but leave an incredible legacy.

“Ellen always lived life at full speed with great ambition and great determination,”. she said.

“Her strength and passion was always a great inspiration to me, and she shaped so much of who I am today.

“She was an amazing friend to many and will be missed dearly by her community. Her loss is beyond words and our family treasure each day that we spent alongside her.”

Her close friend Sam Paior said Ellen was a “deep, compassionate thinker and person”.

“There was no one that she wouldn’t have compassion for. She deeply valued every single person,” she said.

Ms Paior said Ellen was a confident swimmer and loved to go to the beach.

A research and policy lead for social profit organisation JFA Purple Orange, Ellen was also a founding member for the National Disability Research Partnerships Working Party, and an inaugural member on the South Australian Disability Ministerial Council.

Former disability minister Nat Cook launched the council in 2022, and said in losing Ellen she’d lost a friend that she would miss deeply.

“Because of Ellen, that council did and continues to do fantastic things for and on behalf of our community,” Ms Cook said.

“Ellen was a friend I could always rely on to provide me with sage, frank and fearless advice.”

Ellen was an academic at Flinders University, and through her research drove “important change” in improving safety and respect for people with disabilities living in services.

Disability and Community Inclusion Professor Sally Robinson said Ellen was a “deep listener”.

“She took what she heard from people who are rarely included, and used it to lever change in important ways,” she said.

“Ellen was a rare person in driving practical change, reform to policy and also in making important scholarly contributions.

“Her personal and professional contributions are deep and wide, and will continue for a long time.”

It wasn’t just in South Australia that Ellen made an impact.

NDIS Quality and Safeguards Commission Associate Commissioner and Chief Legal Counsel Natalie Wade said Ellen’s advocacy and research was a “gift she leaves the nation with”.

“Disability advocacy in Australia demands a quiet tenacity, resilience, thoughtfulness and above all, to be gutsy and Ellen Fraser-Barbour personified that,” she said.

“Ellen’s research into the best practice for people with intellectual disability to report violence leaves a powerful academic legacy but her decades-long commitment to sharing her lived experience to advance the human rights of people with disability is the gift she leaves the nation with.”

The details of Ellen’s funeral will be arranged at a later date.