I was 15 when my right leg was amputated through the knee.
I am not an amputee who farms; I am a farmer who happens to have one leg. I do not differentiate myself based on my limitations and I don’t want others to either. I just get on and do what is required.
I am also a national disability insurance scheme (NDIS) participant but, with all the good intentions behind the scheme, I’ve come to understand it is hopelessly flawed.
In my experience, the current culture of the administrator of the NDIS – the National Disability Insurance Agency (NDIA) – curbs peoples’ opportunities by focusing on and rewarding limitations.
This is the opposite of what it was intended to do. According to its website, “the NDIS is designed to help people get the support they need so their skills and independence improve over time”.
But in order to get necessary support, we have to explain and demonstrate how disabled we are, how needy we are, how much of a burden we are going to be to the rest of society.
Most people see disabled people as something less, but I have refused to let my disability define me. If I lead with my disability, it is all that people see.
So if we support people with disabilities, we must ensure the bureaucracy does not limit them more than their disability really does.
Consider my story. My amputation was necessary due to ongoing complications from the otherwise successful treatment of a rare and aggressive cancer at two years old.
The orthopaedic surgeon informed me at the time that I was very fortunate because 15 was the best age to lose a leg. I was a little dubious that there was a best age for something like that.
When I was about 17, I was assessed by a commonwealth medical officer and deemed to be disabled enough to qualify for the disability support pension.
I was told at the time that I was only 15% as capable as an able-bodied person. That doesn’t leave me wondering how I have done what I have done. It makes me wonder why able-bodied people have done so little.
I took the disability pension while I went to university. I ultimately wanted to prove that all those who sought to limit my potential based on their perceptions were wrong.
I can’t say with any certainty that I have achieved all that I could in life. Like everybody, I know there are things I could have done differently and better.
Nonetheless, I did realise my “unrealistic” ambition to farm and, for the most part, I have been pretty good at it. I definitely married up, and we have great kids. I have been active in advocating for better outcomes for my community and industry.
I have found my physical limit a few times.
I am not stupidly proud. I take help when it is offered. I did access available government support to get prosthetic limbs, as well as making my own contribution.
Then, in early 2017, a polite lady rang me and advised me that my region was being transitioned on to the NDIS. She advised I would need to be assessed to determine my eligibility to participate in the scheme.
I asked what the criteria were and she replied that I would need to be permanently disabled. She said that she had my records from the Queensland Amputee Limb Service.
I asked, “So you know I am an amputee then?”
She responded with a yes.
I asked: “You know legs don’t grow back, right?”
Things went downhill with the NDIS from there.
I was assessed. This included a sit-down interview for several hours with three able-bodied women I did not know. I wore a pair of shorts so that they could see I was an amputee, but that wasn’t enough. They insisted on discussing how I dress myself, how I use the toilet and even my sex life.
It took nine months for the NDIA to agree I was eligible to participate in the scheme and then two years of arguing about what they would fund, before they would fund anything.
They were very keen to install handrails in my toilet (which I didn’t need) and very reluctant to fund the computerised knee that was prescribed by two separate prosthetists (which I did need).
In the end, I had to start the process of taking the NDIA to court to get funding approved for the necessary tech for my prosthesis. I had to navigate these processes largely on my own.
I learned quickly that being based in regional Australia was a major disadvantage to participating in the scheme.
The NDIS was rolled out in capital cities first. It was far easier to get technology funding approved at the beginning of the rollout.
Regional participants were instantly at a disadvantage by late entry. By then, there was a growing concern about the true cost of the scheme and a much more conservative attitude to funding prevailed.
In regional areas, there is a much lower level of support because there aren’t enough participants in many regions to encourage or justify the same level of service as there are for city-based participants.
As a result I was disadvantaged, not only because I live in the bush but also because I was late to enter the scheme. Ironically, I was then further penalised because I had worked so hard doing what I could with my life that they argued I wasn’t really in need.
Once the funding was approved, it clearly made a difference. Before the new knee was fitted, I fell almost daily while working. Since the new knee was fitted, I wouldn’t fall even monthly.
The outcome of poor biodynamics associated with being an amputee means I am getting old faster than my mates. Beyond this, the injuries I have sustained from falling over at work for over 30 years have taken their toll and my physical working life is now limited. My amputation has finally started to disable me.
There is no doubt that if I had been able to access better tech sooner, my working life would have been extended. There would have been a better return to the taxpayer if they’d enabled me to work longer, rather than the dumb argument that because I was “high functioning” I wasn’t deserving of further support.
Sometimes people condescendingly ask me how I do what I do. I started by thinking that I could. I don’t think I have done anything remarkable.
Pete Mailler is a grain and cattle farmer in regional New South Wales, a fellow of the Australian Rural Leadership Foundation and the former chairman of Grain Producers Australia Ltd
