70 million people in the world need a wheelchair. But less than 15% have access to one.

Multiple Paralympic gold medal winner Kurt Fearnley has given this year’s Australia Day address. He used the speech to demand a huge improvement in living conditions for people with a disability in Australia; you can read the full transcript of the speech below.

I’d like to acknowledge the traditional owners of the land we’re on today, the Gadigal people of the Eora nation. I’d also like to acknowledge the traditional owners of my birthplace in Central West New South Wales because I’m the man I am today due to the years I spent crawling around Wiradjuri country.

Thank you and good evening.

To say that I’m honoured to be invited to speak at this Australia Day address would be more than an understatement. The platform, the audience and the association with our national day, has made this one of the most memorable and daunting experiences of my life. I say this because representing my community of people with a disability, sport in general, and any association with the ‘Green and Gold’, or Australia Day itself are some of the most important things in my life. But as I can’t find a word that encapsulates surprised, excited, amazed and daunted, I guess ‘honoured’ will have to do.

I’m a proud country boy from Carcoar, New South Wales. When I was born I was missing half my spine and I wasn’t expected to live out the month. My family was encouraged to leave me behind at the hospital to facilities created to cater for people like me. Fortunately, my family only ever saw me growing up as their youngest boy and rather than leave me behind, they took me home and I took up my place as the shortest member of the Fearnley family.

When I think of my childhood and growing up in the bush, it feels like a story from the Fifties not the Eighties. I grew up with an abundance of love but money was pretty short. In a house the size of an inner-city apartment, my mum and dad raised their five children and cared for my granny. Thankfully the wood-fired oven kept the place warm in winter, but the outback toilet made a midnight trip to the dunny a terrifying experience.

My family never told me what I couldn’t do or what was off-limits. They just sat back and found out what was possible. Growing up with a disability doesn’t bring with it a sense of shame or self-doubt; it’s only when we learn to interpret the faces of the people around us, or when our environment offers no chance of interacting on an ordinary level, that we learn such things.

On the property I grew up on in Carcoar, concrete was a luxury that we didn’t have, so a wheelchair wasn’t much use. I didn’t see myself as a kid confined to a wheelchair; for a while I didn’t even know what a wheelchair was. If I was going to keep up with the rest of the kids in my town, crawling was going to be the way of my world.

Every day was fishing, rabbiting, swimming and finding trees that I could climb – and more often than not – fall out of. I’d follow my brothers through any number of paddocks. At times they would carry me for kilometres on end but at no point were they going to do it all for me. I’d be told repeatedly that I could do anything and they continually helped me build the confidence to give it a go. Before I was five I learnt how to keep up on the ground by climbing my way through and over barbed wire and electric fences; cross streams that from one foot high looked like raging rivers; or the worst, put my head down and belt through blackberry bushes.

Every afternoon when I eventually made it home, my knees were usually pretty badly beaten up. The scratches would be fairly deep and the bruises would last for a while and I knew that at the end of every day, Mum would have a few words for me. If you thought walking children go through the knees in their pants, I was a knee destroyer!

Every metre I dragged myself was another moment of empowerment.

On top of the usual activities that kids get up to in the bush, sport played a huge part in my childhood. Rugby league and cricket were the favourites. If I wasn’t falling out of a tree or pulling blackberry thorns out of my hair, I probably had a bat or ball in my hand. I had the same dreams as every other child of playing for Australia in the front row, swimming against Kieran Perkins or wicket keeping to the marvelous Merv Hughes. Nobody ever told me I couldn’t so I just kept on thinking that I would.

A turning point in my sporting aspirations came one Australia Day in the early Nineties. The day was no different to any other: crawling and bounding around a field chasing my brothers and cousins in one of our impromptu games of rugby league that never seemed to end. We’d been out there a while and I was pretty proud of myself, as usual. Chest out, kneeling as high as I could, I was fullback that day and every other. I had made a few covering tackles around my brothers’ and cousins’ ankles to cut off certain tries and in my eyes, I was no doubt heading towards a man-of-the-match performance.

Out of nowhere my dad appeared. He picked me up, hoisted me on his shoulder without a word and hurried me inside to sit down in front of the television. I had no idea what was going on and wasn’t too happy about it; who knows how many tries were going to be scored in my absence. What I saw, however, was something else.

I sat and watched people in wheelchairs race around the city of Sydney.

Now, in my numerous visits to the hospitals in Sydney, I had seen a few different wheelchairs. But in my eyes these represented something pretty different. These were big powerful men. I’d dreamt of playing for my country in footy, but these boys seemed to showcase something even better. To me, they were gladiators and I had a new dream: I wanted to be one.

The athletes I saw that day were racing the Oz Day 10km. A race where the streets of Sydney are closed to allow wheelchair racers to take the stage in one of the most picturesque venues in world sport and on our national day. I knew that I wanted to be on that start line. I had to be in that race.

With the help of my school teacher, Maureen Dickson from BIayney High, I was introduced to Paralympic sport and from the very first moment I sat in a sports chair I was captivated. I wanted to be a wheelchair athlete.

The uneven playing field I had played on all my life would be a thing of the past, finally the playing field would be level. If I did well I might even win a few things!

It was because of one teacher’s effort and belief in me that I found myself on the start line and ready to get involved.  As I mentioned earlier my family weren’t the most well-off and wheelchair racing isn’t the cheapest sport going around. Race chair, gloves, helmet, lycra, spare tyres, it all adds up. And that’s before you even get to a race. Mum and Dad were never ones to ask for help but would always find a way to make things happen. When it came to buying me my first racing wheelchair they were pipped at the post. It wasn’t a rich businessman from the city or a loan from a bank that came up with the $10,000 to get me racing. It was 200 odd farmers and labourers from around my hometown of Carcoar that made it happen. Many of the donors would find the money they gave hard to do without, but they believed in me and set me off on my racing career.

Thanks to the support of my local community I now had a chair and the means to travel and compete, and in 1996, I took up a position at the Oz Day 10km start-line for the first time. I don’t remember much about that first race but I knew that I had found my place in life. While a bit younger and chubbier than the rest of the racers, I had become an apprentice gladiator.

For the past 17 years, my Australia Day has been spent with my family and my peers, participating in the sport that I love, in the packed and passionate atmosphere of The Rocks and Circular Quay. We’ll be there again this Saturday and I reckon we’ll be there for another 17 years yet.

The Oz Day race provided the platform I needed: I met the best in the world, I raced the best in the world and the experience on the streets of Sydney provided the springboard for my racing career. I’ve been traveling the world racing the best ever since.

I’m grateful to have recently returned home from my fourth Paralympic Games. London was the best Paralympics I’ve participated in and by the accounts of those who have been around longer than me, the best ever.

Australia has a proud history of competing in Paralympic Games and has sent a team to all fourteen recognised Games since they were first held in Rome, 53 years ago. With the influence we have had on the Paralympic movement, it’s fitting that the Games we hosted here in Sydney changed Paralympic sport for the better.  The Sydney games were less about participation and more about competitive excellence. Crowds came to watch the sport for the first time, not just to see a sideshow. Athletes like Louise Sauvage dominated the competition and captivated the audience. The Sydney Games made every Paralympian feel like a respected athlete.

Things slowly built over the next two games in Athens and Beijing, however, the advances were more on the sporting field than off it. The approach and performance of the athletes were becoming more professional, teams were better prepared, athletes were faster and stronger.

Last September, London hit with the perfect storm: a sport-mad nation with significant, dedicated funding, hosted the Games in the modern online world with commercial television coverage and live event streaming.

The culmination was amazing: professional athletes producing awe-inspiring performances, in front of full houses, in every sport, every session, broadcast all around the world to millions of people.

London made us athletes feel like superstars, not just gladiators in the eyes of our peers but genuine superstars. Everywhere you looked across the city of London, every disability was proudly displayed across buildings and banners. You were stopped in the streets, not just because you were in a uniform but also because people knew your name and what you did. Major corporations featured Paralympic athletes in their advertising campaigns. You couldn’t switch on the television or pick up a paper without being smacked in the face with the Paralympics.

We may have shared venues with our Olympic brothers and sisters but by the time the Paralympics came around they were long gone and this was obviously our stage. Seeing the corporate world support and be the standard-bearer for Paralympic sport was something that I’d always hoped would become a reality and it really was that way in London.

In Australia today, our Paralympic journey continues but isn’t over. Through the professional support of the Australian Paralympic Committee we’re progressing, but the level of public and corporate recognition is far from the UK standard. The Australian Media aids our progress every four years and for the last two Games we have had the best television coverage in the world with the ABC’s comprehensive broadcast winning praise and awards alike. Our countless hours of live coverage beamed back home was in stark contrast to the coverage in the United States: they paid millions for the best coverage rights yet didn’t think it would be watched and showed an astonishing zero hours of live events.

The positive Media attention during the Games themselves is fantastic but it’s not ongoing.  When the Games are over we fall out of the eye of the public and disappear into the ether. Don’t get me wrong, you may see a person with a disability on television or in an advertising campaign, however, the underlying theme is likely to be “don’t be an idiot, you might end up like me”. I hope that one day soon, you will see an Australian person with a disability, either congenital or acquired, sporting or non-sporting, in a positive advertising campaign, espousing the belief that all is not wrong with disability, that you can actually live a great life and achieve great things.

After the Beijing Games, with three Paralympics and three gold medals to my name, my future as a professional athlete was still far from secure.  My sporting record wasn’t enough to capture the interest required to enjoy a career in sport.

After a dozen years of burying myself day in and day out with my wheelchair racing, all would be out shone by the eleven days I spent crawling across the Kokoda track in Papua New Guinea. To date, my Kokoda experience was the longest, most grueling family vacation that I have ever had. I don’t have kids yet and it may get outdone by a simple road trip to Carcoar one day, but for now, its number one. I was surrounded by my brothers, cousins and close friends on a journey of a lifetime.

Crawling Kokoda ripped my body to pieces but I am grateful for every moment that I was able to spend with my family who traveled with me on the Track; and the interactions I had with the Papua New Guinean people will be a highlight of my entire life. The love and support that I received from these people was only equaled by their confusion at why a person would want to crawl the Track in the first place.

I had my reasons. To keep it nice and simple I believed that I was strong enough to, I wanted to, and the ‘why nots’ just didn’t add up.

One of the lasting memories of the trip is the lengths that the local porters would go to to be sure that I could function at the end of every day. A PNG man named Mac who had no shoes, who had my 25kg backpack on his back, and who on occasion balanced my wheelchair on his head and shoulders, would continually try and convince me to let him carry me too. When I’d buried every part of my strength into the day, he was always there. I have received continual support in my life, but I’ve never needed it more then along that track.

When asked what the hardest part of that track was, I cannot go past every single evening. The crawling had stopped, the pain had kicked in and the realisation that I had another day of pain waiting for me in the morning. But each night I’d remind myself of what I was doing, of who I am, and of what our Aussies had done there in the past.

The choices that were made by our soldiers during the Kokoda campaign taught me more about who we are as Australians then a dozen years of racing for my country. These men fought for Australia they fought for their mates, they fought for our future and in some instances made the decision to sacrifice their life for the man standing a metre away that they had only just met. They looked after those who were worse off than themselves. One incredible man, Corporal John Metson, chose to crawl for two weeks through the jungle rather than taking the time and energy of the people who could offer support to others that he thought had it worse than him.

In my moments of managing the pain of my chosen career as a marathoner when I question ‘will I or wont I’, ‘can I or can’t I’, I remind myself of the choices made on the Track. I remind myself that whatever choice I make, I want those people at that time, I want them to be proud of whatever decision I make. I want their support.

Support, whether from family, corporates, media or sporting bodies has helped build me as an athlete and as a disabled citizen, but the linchpin for the advancement of life as a person with a disability in Australia is the support of government through programs and funding.

Paralympians across our country struggle to stay in their sport due to a lack of corporate backing, however it’s often not the biggest financial struggle that they have. Of far greater concern is the financial plight they may also carry due to the ongoing costs of the management of their disability. While many athletes in our country are buying their first house or planning the next step in their career, many athletes and other people with a disability often carry a far greater debt from the costs associated with living with a disability.

In the coming months we’re seeing the roll-out of trial sites of the National Disability Insurance Scheme, the NDIS. The largest will be in my current home, a place I love, Newcastle & the Hunter. You may have heard about it in the news but there’s a good chance you still don’t know much about it. I’d say you know more about the arguments & disagreements about how it will be funded than the nuts and bolts of what it proposes to deliver. Pride in a socially just country has no price tag and it needs to happen.

Ironically enough, the year of my birth, 1981, was declared the International Year of Disabled Persons by the United Nations. It called for a plan of action at national, regional and international levels, with an emphasis on equalisation of opportunities, rehabilitation and prevention of disabilities. The theme of the year was ‘full participation and equality’, defined by the UN as the right of persons with disabilities to take part fully in the life and development of their societies; enjoy living conditions equal to those of other citizens; and have an equal share in improved conditions resulting from socio-economic development.

Thirty two years ago the action plan was set. And we have made progress in the right direction.

Through the Disability Discrimination Act and the tireless work of individuals such as our Disability Discrimination Commissioner here today, Graeme Innes, we have made improvements in opportunity and equalisation.

Overall though, I believe that in Australia, we have failed to make enough progress on the action plan and we need to improve. Now.

The World Health Organisation estimates that 70 million people around the world require the use of a wheelchair, yet less than 15 percent of those people have access to one.

My wheelchair is my life, it is my independence, I don’t like to see it leave my sight. While I spent large parts of my childhood out of a chair, and was crazy enough to crawl the Kokoda Track, I can’t imagine life without my chair. It is part of who I am, my legs, my life. I’ve seen first-hand through my travels through countries less fortunate than ours what life is like for people who don’t have access to a wheelchair. Every day is a struggle and pure sustained existence is astonishing. And so I am grateful for the potential funding of wheelchairs to people with disabilities across our nation. But on many occasions the wheelchairs are inadequate to live a healthy, independent, and abled life.

Should we as Australians be grateful to be able to exist or should we ask to be given the chance to contribute and prosper? I believe the later.

It’s not all about chairs though.

Living with any disability in Australia isn’t rosy compared to the rest of the world, even among other prosperous nations. If you have a disability in our country, you’re more likely to be unemployed,

more likely to be living in poverty and more likely to be less educated than if you didn’t have that disability. In comparison to other economically rich nations that are members of the Organisation for Economic Co-Operation and Development, the statistics for Australia are damning.

In Australia, 45 percent of people with a disability live in, or near, poverty; more than double the OECD average of 22 percent. We rank 21st out of 29 OECD countries in employment participation rates for those with a disability. We rank 27th of the 27 in terms of the correlation between disability and poverty.

Our system is broken, it isn’t doing enough.

The introduction of the NDIS won’t be an instant success and fix all wrongs, but it will help. Mistakes will be made. Yet we must make the realisation that mistakes have been made every day for the last 30 years and change is the only way forward.

The NDIS is a complex proposal and I won’t attempt to explain it to you now. It is however built around four simple principles. And I quote from one of the guiding papers for the NDIS, PWC’s Disability expectations: Investing in a better life, a stronger Australia:

Principle 1.

– People with a disability have equal rights.

While the recognition of equal rights among peoples of all races, colours and creeds is now near universally established, those with a disability still struggle on the margins of recognition.

Principle 2

– Supports are needed to allow people with a disability to exercise their rights.

People with a disability have been denied access, hidden and ignored. They and their families are arguably the most disadvantaged of all Australians across much of our society. If people with a disability are to exercise their human rights, they need a range of facilitators to help them negotiate this ‘inaccessible’ able-bodied world.

Principle 3

– Individuals with a disability should have choice in prescribing their access needs.

A critical component of the NDIS framework is the dismantling of rationed, block-funded government purchasing of a narrowly defined suite of services. Individuals with a disability will have the purchasing power to choose what their supports look like.

Principle 4

– Cultural, systemic and environmental obstacles to access and participation for people with a

disability should be removed.

A potential limiting factor for successful change relates to the current obstacles to allowing people with a disability access to mainstream services. Australian governments and community need to work together to systematically facilitate access to mainstream services for all people.

Simply, these four principles aim to provide fairness, facilitation, choice and inclusion.

Providing a scheme for those in need is one thing. The large roll-on comes through the education of the business world and general public. Currently, if you come up against an obstacle to your disability and voice your concern, there’s a good chance you’ll be labeled a nuisance. In 2009 I took a stand against what I thought was an unfair, discriminatory situation and voiced my displeasure and concern. I don’t regret making a stand, however my experience and the pushback associated with it is a healthy reminder for me of the lack of empathy and understanding of issues facing people with disability amongst the mainstream community.

Without empathy and support from within my community I would have never found my way to the life I get to live now; a life that hinged on successful financial rationalisation, where a community found that the cost to support me was an investment into the lives of all of those who I have been able to interact with.

Disability isn’t a story told through race or religion. We’re not marginalized by picket lines or scare campaigns. We’re marginalized by our invisibility. Too easily we are overlooked and ignored. Too often the story of disability is told through unemployment and poverty. But we stand on a precipice with the potential of change. The NDIS isn’t a silver bullet, but it is a much-needed start in the continual enabling of people with disabilities across our country. When the question is raised about how do we handle the financial burden of the NDIS, we have to ask how can we function as a light to all those around the world, when we continually fail to provide the support and services to those who need it the most within our own communities?

To finish, I propose we look 10 years into the future. And imagine you are looking into the eyes of a child you love dearly. This child has a disability. Will we happily accept that we are still ranked at the bottom of developed nations in how we cater and support that child? Or will we have pride in that we have worked to reverse that situation and now 10 years on lead the world in supporting people with disabilities?

In the OECD we are currently last in aiding people with disability out of poverty. When I hear that fact I wonder how it came to be so. But then I realise that it’s irrelevant. What matters is that we as a community own the fact that we haven’t done enough. And that when we turn that fact around we as a community will all be better for it.

You can also read last year’s Australia Day address, delivered by Charlie Teo, here.