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The oldest known example of a successful surgical amputation dates back to 31,000 years ago.
But in day-to-day life, amputation is not an experience that receives a lot of attention. National Amputee Awareness week (4 - 11 October) aims to spotlight the experiences of people who've lost a limb.
Darrel Sparke is President of Amputees New South Wales, an advocacy body and support community for amputees and their families. He says a lot of people have inherited an idea of what it means to be an amputee.
“Amputations been around since ancient Egypt. It's one of the oldest known medical - known - practices. So, dentistry and amputation. Although a lot of people didn't survive amputation, it's been around a very very long time. So. There's I guess a sense of romanticisation around what amputation means, you know, historically most people encounter a pirate movie and see that there's an amputee and we see - even in our Disney programs, and television - we see a lot of this fixed idea about what amputation looks like and how people just, get on with it, without modification.”
He says the reality for many people who undergo an amputation is a confronting experience that - at least initially - upends their life.
“But it's actually a really dark place, and it's a really hidden place. Because we say it's a hidden community, because amputation makes you want to retreat from society, because now you're a spectacle. Now there's something different about how you look, and how you move, and how you live. And so it's quite a - quite a heavy burden for any individual person to carry on their own, about how they feel about themselves, and how they imagine other people feel about them.”
That's where organisations like Amputees New South Wales come in. Advocacy and support groups play a critical role connecting individuals and families to the community of amputees.
“Nobody really gets prepared, there's nothing else you do in life that gets you prepared for losing a part of your body, in such a visible and highly impacted way. So what we often do is get involved in helping them, reassure them that life goes on, that first of all need to deal with the stress associated dealing with this unknown entity and how that - they can find a pathway throughout that process, without feeling completely lost and alone.”
Melissa Noonan is the CEO of Limbs 4 Life, a national organisation that empowers amputees and their families with peer support, rehabilitation, prosthetic services and resources. She says there are some common fears and concerns when people first undergo an amputation.
“Often it's just day-to-day living and some really basic things, like 'how do I get in and out of the shower? Will I be able to drive a car again? Can I return to work?' You know, 'how am I going to be able to get around?' So, you know, it's very grassroots things, but it's things that are important to all of us, that you take for granted on a day-to-day basis but that you just don't think of.”
Ms Noonan believes peer support is important to help people socially and emotionally through the experience, as well as connecting them with funding. She says the change in awareness in her lifetime has been notable.
“It's 20 years since I lost my leg. There didn't seem to be a lot of people out there and we didn't really have a lot of data. But once we started to know, and you know, we got the numbers, I almost choked to know that there was that many people in a similar situation to myself - but obviously many others, that were amputees. But it was like it was hidden, it was under the radar. I think you see a lot of other disability groups that have got quite loud voices, and for a long time ours has been quite quiet.”
There are number of reasons people undergo an amputation, including trauma like a car accident or workplace injury, or cancer and other diseases. According to WorkSafe, Victoria alone saw more than 150 limbs or digits were amputated last year due to workplace accidents.
However, one of the leading causes is diabetes - and it's a condition that's on the rise.
Ms Noonan says Australia has the second highest rate of diabetes-related amputations in the OECD.
Carolien Koreneff is a credentialled diabetes educator and registered nurse.
She says in any given year, about 5,100 Australians with diabetes will undergo an amputation as a result of complications from the condition. Diabetes can cause damage to blood vessels or to nerves, which stops people registering if their feet are are damaged or wounded.
“If there is a wound that doesn't heal in time it can lead to septicemia (sept-uh-SEE-mee-uh), and to problems such as osteomyelitis (ost-ee-oh-my-uh-LITE-us), which is an infection of the bone, so the infection will just continue to travel further and further up the body.”
However the vast majority of these amputations - about 85% - can be prevented through things like good foot health.
”To look after the feet, to prevent problems - it's important to watch out for any injuries, changes in feeling, changes in temperature, any corns or calluses or areas of skin that don't look right. And to wash, dry and moisturise the feet regularly to prevent cracking. Because cracked skin can let bacteria in. And to check socks and shoes, to wear protective footwear at all times and the socks are there to get rid of any sweat, and thereby minimise the risk of infections.”
However it's an issue that continues to disproportionately affect First Nations people.
According to Diabetes Australia, Aboriginal and Torres Strait Islander people are almost three times more likely than non-Indigenous Australians to have diabetes.
The serious consequences of this disparity were recently spotlighted by Tanya Hosch, Executive General Manager of Inclusion and Social Policy at the Australian Football League.
In August Ms Hosch, who is of Torres Strait Islander descent, stood to speak at the launch of the campaign for an Indigenous Voice to Parliament.
“In terms of our health, we know that Aboriginal and Torres Strait Islander people endure a burden of disease 2 to 3 times higher than non-Indigenous Australians. And now I want to share a deeply personal and real story about this data. It's too easy to speak of numbers, without speaking about people and families and communities. A little over two weeks ago, I had my lower right leg amputated. And so having left hospital - only yesterday - I'm standing here on one leg today.”
In her speech, Ms Hosch advocated for Indigenous-controlled healthcare to improve outcomes.
“I have type 2 diabetes and I contracted a related disease, that I have battled for 3 years and across six surgeries, trying to avoid the loss of my limb. I'm not without privilege, and access to services, but still the service design let me down.”
Like Ms Hosch, the National Aboriginal and Torres Strait Islander Health Plan for 2021-2031 argues that "self-determination is critical" for closing the gap in healthcare outcomes.
That gap between Indigenous and non-Indigenous people - in diabetes, and in amputation rates - is still large. In sharing her personal story, Ms Hosch has put the spotlight on an experience that often goes overlooked.
For Darrel Sparke, that kind of visibility is key to creating change.
“More can be done, there's more that has to happen, just like any disability, or any difference for anyone - there's an element of recognition first, and through that we find a pathway to respect and collaboration to get that celebrated outcome of success and good life, afterwards.”
