Ausnew Home Care | Our understanding of limb difference is changing, and these young Australians are leading the way

Our understanding of limb difference is changing, and these young Australians are leading the way

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Knox Gibson believes he's "better off" having one arm and not two.

The 14-year-old amputee from the central west of NSW has little memory of his life with two hands and he wouldn't change the opportunities that have come from being limb different.

"I think I'm really lucky … the things I'm doing and the things I'm going to be doing are just amazing," he said.

"I love my sport, I love my friends and I kind of do a little bit of acting here and there."

Knox surrounded by friends at school, smiling as he talks.
Knox says his friends at school have been very supportive.(ABC News: Brendan Esposito)

Knox is currently working in Germany after winning a role in the next Hunger Games movie — the prequel in the popular film series. 

"I'm really happy because the character I've been cast as didn't have limb difference in the book and I just think it's going to help a lot to get that advocacy out there," he said.

Knox's right arm was amputated below the elbow after an accident with a ride-on lawnmower when he was four. 

"It's just kind of given me resilience and I guess determination," he said.

A young Knox Gibson leans on his amputated arm on a day bed.
Knox Gibson says he doesn't remember much of life with two hands.(Supplied: Knox Gibson)

Knox advocates for the limb-different community and the accurate representation of people with disability across film, television and other media.

"There's been so many different movies where there might be an actor playing a character with limb difference or something like that and obviously they're not," he said.

"I think there needs to be more representation so kids can get the right idea about people with disabilities."

Knox was asked to audition for the Hunger Games movie after starring in a Netflix short film called Forgive Us Our Trespasses, which was released earlier this year.

Knox wearing a black coat, peering around a wooden structure in a snowy landscape.
Knox starred in the Netflix short film Forgive Us Our Trespasses.(Supplied: Netflix)

He played the lead role of a boy with limb difference being hunted by Nazis as they persecuted and attempted to murder people with disability.

"Acting is one of those things that's really hard to do, and I just really like that pressure," he said.

Changing language around limb difference

Knox is a member of Aussie Hands, a national organisation that provides support and opportunities to amputees or those who have been born with upper-limb difference.

Stuart John, the president of Aussie Hands, lives with hand difference and said the organisation was a chance for limb-different people to connect.

"You realise there are other people out there that go through similar [experiences] to what you've gone through," he said.

Stuart John holds up a hand with a smiley face drawn on it.
Stuart John says Aussie Hands is a way for limb-different people to connect.(Supplied: Stuart John)

Aussie Hands is a co-founder of the Australian Hand Difference Register, based at the Murdoch Research Children's Institute in Melbourne.

Launched in 2018, the register's aim is to get a more accurate picture of hand difference across Australia.

There are more than 800 children with limb difference already on the register.

Clinical lead David McCombe said congenital limb differences happen during the development of the foetus, and give rise "to absence, underdevelopment, duplication, overgrowth or constriction of the limb as it grows".

With one in 500 babies born with hand difference each year, Dr McCombe said research into limb difference was "expanding dramatically".

David McCombe smiling in an office, decorated with hand prints pictures.
David McCombe says the medical profession is moving away from unhelpful terminology.(ABC News: Andrew Altree-Williams)

Across the medical profession there has been a change in language around limb difference, with a move away from unhelpful terminology.

"Words like malformation, deformity and anomaly are not things that kids want to carry with them as they grow and develop," Dr McCombe said.

"At the end of the day, it's the child, who then becomes the adult, who's living with the difference. They're the ones who've got to make the best of it."

Being comfortable with disability

Creating awareness of limb difference is something that Ayelet Marha, a trainee high school language teacher from the NSW Central Coast, also feels passionately about.

The 24-year-old was born with a form of hand difference called symbrachydactyly.

"I have a little bit of a wrist, and where my fingers would have formed I'm left with these little skin nubbins, as we call them," she said.

Ayelet smiles at the camera, as a group of kids study in the classroom behind her.
Ayelet Marha says no-one bats an eye over her limb difference.(ABC News: Chris Taylor)

In 2017, Ms Marha started her travel Instagram account where she shares photos of her nubbins, instead of selfies.

"I think it's a really fun way to spread awareness of limb differences, specifically mine," she said.

As a member of Aussie Hands, Ms Marha mentored other young people with limb difference and was motivated to become a teacher.

"I understand that everyone is different and that everyone works in a different way," she said.

At school, Ms Marha does not feel she has to hide her hand difference.

"I just go about my business. I act like I have two hands and no-one bats an eyelid," she said.

Ayelet Marha sitting on a desk leaning on her hand, speaking to a class.
Mentoring other young people with limb difference helped motivate Ayelet to become a teacher.(ABC News: Chris Taylor)

Living with limb difference has been positive for Ms Marha and she feels comfortable with her disability.

"I'm definitely the kind of person that has never been interested in what other people think about me and how other people perceive me," she said.

"I wake up every day and I live my life, and having one hand is just a small part of it."

Thriving on pressure

Knox's sitting on a couch laughing with his mum, sister, brother and father.
Knox's family is supportive of his swimming and acting ambitions.(ABC News: Brendan Esposito)

Knox Gibson shares Ms Marha's attitude.

The busy teenager fits in acting around studies at St Stanislaus' College in Bathurst, where he takes part in all classes including physical education and automotive studies.

"A lot of my teachers have been really good at letting me do stuff myself and it's just helped me learn and adapt so when I'm older I'm going to be able to do all those things myself."

Knox on a rowing machine in school, with the elbow of his amputated arm gripping the handle.
Knox doesn’t always use his prosthetic arm when in class.(ABC News: Brendan Esposito)

Earlier this year, Knox received a bionic arm which is the latest technology in multi-grip prosthetics.

"The difference it makes is massive … it helps me carry things and to do all those little things that can be hard for someone with one hand," Knox said.

Sometimes Knox chooses not to wear his prosthetic.

"I usually take it off in class when I might be writing or something because it's just a bit uncomfortable at times … I can use the rest of the arm that I've still got there," he said.

A side profile portrait of Knox against a black background, raising a bionic arm into the air.
Knox's bionic arm uses the latest prosthetics technology and has made a massive difference to his life.(ABC News: Brendan Esposito)

Along with his dreams of becoming a fully fledged actor, Knox also hopes to become a Paralympian.

Knox learnt to swim not long after his accident, but it wasn't until year six that he went to a national competition thinking he "might be lucky" and came away with a swag of medals.

Knox is currently in the NSW Para Development Squad.

"If acting does come along I know it probably will be hard to continue with swimming … but home Games in 2032 [in Brisbane], that is really the goal," he said.

Knox in a lap swimming lame, resting one arm against the side of the pool.
Knox hopes to compete in the 2032 Summer Paralympics in Brisbane.(ABC News: Brendan Esposito)

Knox thrives on the "adrenaline and pressure" that both acting and swimming place on him.

"My limb difference has made me do a lot of things," he said.

"It's taught me that a lot of stuff can happen to you in your life but you've just got to move on and keep that positive mindset."


Source: ABC

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