This is Episode One of The Butterfly Effect, which as a series has had over 14 million views as of January 2025.
There was once a man who was blind, deaf, and could use only one arm. This man was not especially unusual, except that he lived until the age of fifty.
Whilst his life was pretty unremarkable by todayās norm, it is extraordinary when we discover that this man lived five hundred thousand years ago.
This man was the quintessential caveman and even more remarkably someone or some many had fed, washed, carried, and loved him for the term of his life. They werenāt paid to do so and yet it probably cost them a great deal.
Only love and compassion can explain this remarkable feat. Not only did he survive, but according to the scientists who found his remains in what is modern-day Spain and named him āElvis,ā he was a valued and equal member of his community.
Today, of course, he and those like him would be cared forābut would he really be included as a valued and equal member of our community?
The struggle for life and the human condition has followed a long journey. Humankind, as we are today, has had many achievements along that journey while attempting to survive and master that struggle. The first achievement was our emergence as the dominant species on Earth, which was due in no small part to our next greatest achievement, which was to become conscious beings.
Since this cognitive revolution thousands of years ago, humans have developed language, writing, art, music, religion, governance, and science. Several industrial revolutions have led to the technological revolution, driving even more remarkable and quickly occurring change.
Many great achievements have occurred, from the wheel to Wi-Fi, but the greatest change, the greatest revolution, has been the biological and cultural evolution of humans.
Who are we as a species? What have we become? Is our last frontier facing us now?
Just as they have with what has gone before, humans will design the future world. It should honour and pay homage to the conscious, thinking, loving beings that brought us to the present, and it should not limit human survival.
The human species thrives in a space where recognition of the compassionate beings humans truly are is paramountāit is the key to survival.
As existence moves toward a purely material sphere, the loss of the natural world and the inner one has driven survival. Current society places inhumane constraints on humanity, preventing us from caring for each other and our natural world.
Yet, believing care is unaffordable is an artificial construct of our design.
The growth of our brains has led us to a natural inclination to care for our young. Regardless of our physical abilities or success, we all require nurturing and sustenance to survive. The idea of survival of the fittest does not fully explain the importance of care in our evolution. However, our current technology and information-based system have failed to provide for the weakest members of society adequately.
Our responsibility is to shift our focus and recognise the value of compassion and inclusivity. We must not allow our technological advances to hinder our ability to thrive and progress as a species. It is important to remember that our success is not solely attributed to our ability to invent tools or harness fire but also our capacity for love, connection, and empathy.
Contrary to popular belief, our ancient ancestors were not solely motivated by brute survival instincts. Archaeological evidence suggests that compassion and love played a significant role in their lives, particularly in forming familial bonds. The development of compassion has been essential to our evolution and survival, and it remains a defining characteristic that sets us apart from other species.
Unfortunately, our current societal emphasis on survival of the fittest has devalued specific individuals and groups. Our focus on financial gain has resulted in the commodification of human life, leading to a lack of social inclusion and dehumanisation. We must recognise the actual value of human life beyond its financial cost and prioritise compassion and inclusivity in our society.
Materialism has taken a toll on humanity, with many spending most of their lives working without ever achieving what society defines as success. The fittestāread āwealthiestāāindividuals are valued above the rest. Financial concerns dominate the lives of the majority. However, it is time to view the global population as one family rather than separate entities. Even though we may seem divided on the surface, the āoverview effectā experienced by astronauts shows that we are all connected, from prehistoric times to the present day. Our compassionate nature has been a constant throughout history, defining us as social beings. Wars and struggles are seen as necessary for a brighter future, but it is up to us to make positive changes. In times of disaster, we have always worked together to survive, which makes us truly evolved. The burden of caring for disabled individuals has led to the implementation of a societal model of care, showing that we can come together to provide for the most vulnerable members of our society.
Under this system, the true leper of all timeāthe poorācould finally be accommodated.
Poverty is the most significant social disability of all time and one that people with disabilities are too often also carrying as another burden.
Over 500,000 thousand years, it was only in the last 70 that we developed human rights laws and medical care. And it was only in 1986 that the huge institutions in this country that housed the unwanted were closed. The baby boom that occurred, especially after the Second World War, precipitated the need for hospital care, social welfare for disabled, for single mothers and the unemployed.
Finally, medical care, paid for by the government in the National Health Service in 1948 in the UK and Medicare in 1975 in Australia, kept more of our poorest alive. They were finally handed over to the state from languishing in religious institutions.
But all this social welfare, medical systems, schools, and education came at a price. It was a price that governments across the world would have to bear. The welfare state was born. Single mothers, the unemployed, the disabled, the sick, and the wounded could be cared for. Taxation rose, costs rose, and for a while, so did our standard of living.
Then, the conflict between caring for our loved ones and affordability also arose.
After the Second World War, the United Nations Declaration of Human Rights was born. This was the first international declaration of human rights. It was not until 1975 that we had the Declaration of Rights for disabled persons. It would be the 1980s before people with disabilities were encouraged to live in the community, and the worst institutions finally closed their doors some 400 years after they began.
The parents of disabled children first marched for their care after the war. In the 1970s, those children marched themselves. Young people, who got out of their wheelchairs and crawled up the steps of the Town Hall in protest, brought about the advent of the American Disability Act. Here in Australia, it was 1986 before we had a disability rights act and 2013 before we implemented the NDIS.
Remember, Elvis lived 500,000 years ago!
Unfortunately, many people with disabilities in Australia face significant barriers when it comes to participating in their community. While it’s essential to promote inclusivity and accessibility, our current economic system has made it difficult for many individuals and families to afford housing and care. Even those who have a double income may struggle to make ends meet, let alone those living on a pension and coping with a disability.
This situation is particularly tragic when we consider that many children with disabilities are now outliving their parents. Some parents are so afraid of what will happen to their children after they are gone that they have taken their own lives along with their children’s. Others in the community have suffered due to inadequate care and support, leading to premature death or a lonely and desperate existence.
Despite our modern advancements, the need for connection and community remains as strong as ever. Throughout history, humans have sought out others of like mind to form families and communities based on love, compassion, and shared values. This primal need for connection has sustained us throughout all time and is what defines our humanity.
Yet, even as we live in a world more connected than ever, we are very much disconnected. Poverty, hunger, and disease remain persistent problems. Wars continue to ravage the earth. The COVID-19 pandemic has shown us that even with all our modern technology, we still resort to quarantining people in their homes to prevent the spread of disease, just as we did with earlier outbreaks like the Great Plague and influenza.
Despite these challenges, we must continue to prioritise connection and compassion in our lives. It is what makes us human and helps us navigate even the most difficult of times.
The human condition, including man’s inhumanity to man, still exists today. However, our current barbarism should be judged more harshly than 500,000 years ago, given our current language, knowledge, and civilisation. Despite our progress, the realities of the prehistoric world are not too different from our own. For example, even with tremendous progress, we have not solved fundamental issues like poverty, malnourishment, slavery, torture, and child soldiers. Additionally, many people with disabilities are neglected, and we judge the quality of care by funds allocated rather than the quality of their lives and inclusion in our community. This may be because we do not see them as equal.
The institutionalisation of the elderly and disabled provides bulk care to large groups but lacks compassion and connection. Caregivers are expected to be bum wipers and not much else, leading to loneliness and fear in our elders. The same applies to caring for people with disabilities, with little change in the experience of caregivers. The current business model prioritises exploitation, seeking to hire many disposable employees and constantly rotating staff to avoid investing in their development. Instead, we should prioritise caring for all individuals in our society with compassion, connection, and a deep respect for their humanity.
We judge how we look after people with disabilities in our community by the financial cost and not by the quality of their lives and inclusion in our community.
Highlighting this scenario is a call for a carer to attend to a man we will call Tony, who had no one to get him out of bed. It wasnāt the most fantastic start because the carer needed to arrive at Tonyās place before leaving the previous job.
This is the story of how the interaction between Tony and the carer ensued:
Tony, happily, was to be found in his bedāa hospital bed with the sides up and thick padding. The bed was covered in vomit and excrement. Tony was a 61-year-old man in a white T-shirt covered in food and the biggest movie star-quality smile. I was taken aback. Here I was, late, and he had a smile for me. I said hello and that I had no idea what I was doing. He smiled again and said,
āI will teach you.ā
We became a team for nearly five years and had many adventures.
His place was filthy, with massive holes in all the inner doors and no food or drink in the fridge.
This man couldnāt use a phone and had no real use of his hands but only had four hours of care daily. He was helped to get up, toileted, washed and dressed and placed in front of the TV with a DVD from the library. He had no breakfast, lunch, company, or one until tea shift. Meals on Wheels shoved down him ā¦ then bed.
His minimal level of care, just enough to survive, was maintained with no thought to the quality of his life and that this was a human being with human needs.
Tony spent 15 years sitting in front of the same documentaries repeatedly.
In modern zoos, we provide enclosures to promote the emotional well-being of animals and ensure that they have stimulation and company. It is staggering that essential care for human beings fails to do at least the same.
Tony had suffered third-degree burns when one carer placed him in a hot bath, and subsequently, he spent three weeks in ICU. He had had his bladder burst by another carer who decided to flush his catheter with tap water. He had endured a broken leg from being dropped by another carer, which was only discovered when his father came around and found him in the bath with the carerās naked girlfriend and some essential oils. He had severe haemorrhoids and bled every day. He had teeth that had been removed by being snapped off at the gum. He had an extremely painful testicular cyst the size of a grapefruit. Yet he still managed to smile.
Subsequently, he has secured a 24-hour, 7-day week care plan through NDIS.
He had had a long succession of carers, many of whom had paid lip service but who left him when the going got tough ā as inevitably it would.
We went on trips to the Minister of Health and gate-crashed a breakfast with the Prime Minister, but finally, after considerable campaigning, he got his care.
No longer being left alone at night cold, no being hungry, bored and thirsty. We went to beaches, we took his dad out most Sundays, we went out everywhere we could think of. He and I got stuck in lifts, bogged on beaches and shut in a zoo when we couldnāt get out through the gate!
So, there we were, 7.30 pm, getting dark, watching the city lights with the yellow-tailed bandicoot. Tony was thrilled.Ā This was adventure. We were out. The bandicoots may have been slightly concerned but we knew weād work it out.
Just shy of 5 years later and it is now the final weeks of his life. Iāve taken Tony out of hospital. He had been cardioverted twice. The hospital had neglected to give him his medications after renal colic and his heart blew out. In fact, they had neglected to even tell us that he even had a kidney stone. His life was apparently worth so little, the pain of a kidney stone was acceptable to them. I had had the same argument I usually had, (with hospital staff) which was whether his life was worth living and would I change his Advanced Care Directive.
He was dying and it was time to honour his wishes and take him home. I said to my RN, āHave him ready, Iām taking him.ā
Tony talked to very few people around him because after years of silence, he was comfortable. Iād whisper in his ear, āGo to Californiaā and heād know I was going for a while and heād vague out. Back in his chair, which he named āBucephalusā after Alexander the Greatās mighty steed, he was much more himself.
I had the oxygen supplier there waiting at his home and we got everything ready. Such a long journey we had had. A promise was about to be fulfilled. I had stayed with him until the very end.
That last week we got as much life as we could. He was prescribed medical marijuana, which he enjoyed, and watched movies and sometimes just the fish tank on YouTube. He chatted during the day; he chatted at night. I was able to give him hour-long showers in the warm water. We played music, sang, cried and sometimes we just were. With a disco ball hanging from the ceiling that we had salvaged from an outing to Victor Harbour, and surrounded by fairy lights and music, he lived his last days.
The rhythm of his life was our routine.
If he was awake, we chatted and allowed him to take advantage of every second. Just as we had done in the years before.
We gave him his autonomy as a human being.
Tonyās life officially ended on 12 April 1.26 am. He had only been actively dying for 12 hours. He wasnāt going to waste life dying, I suppose. I was next to him and the sound of music played. I was singing, āWhat are we going to do about Mariaā and then he just left.
He was in no pain, and he was warm and safe and cared for. He did not have to fear strangers attending to him. He didnāt have to fear people not turning up or not knowing what he needed. He had his team, and he was in total control of his environment, rather than dying to some elseās schedule and convenience.
Tony had psychological issues from the years of poor care, and his condition affected his memory. He would panic and get out of sorts. So, we could call him back with a familiar phrase:
āYou are safe, you are being cared for, and you are loved. The door is locked, Koda the dog is under your bed. You are at home, and I am here, and I will not be leaving you alone.ā
I performed CPR until the paramedics arrived and then they took over and he was pronounced dead. Alison, the nurse, and I stayed with him that night. As promised, we didnāt leave him alone. The next morning, when we stood around the gurney, we just said spontaneously as a team:
āYou are safe, you are cared for, and you are loved.Ā You will never be alone.ā
How many hundreds of times had we said it to comfort his mind and his soul?
Tony was a Hare Krishna devotee, and we bathed him in Ganges water, washed him with sandalwood and turmeric and wrapped him in sacred cloth.
What compelled me to do all this for Tony?
I am slightly embarrassed to say that it was not just my compassion for him. It was his for me. That is something I feel that I can never repay. It is the most humbling thing. I was able-bodied, had healthy children and my whole life ahead of me. Yet, I saw only his barriers. He could have been angry and perhaps should have, given his situation, yet he chose to show me compassion. As Hugh Mackay said,
āNo one can promise you that a life lived for others will bring you a deep sense of satisfaction, but it’s certain that nothing else will.ā
There are many people with disabilities who suffer from loneliness and a lack of compassion in their lives. Many of them live in isolation and are deprived of basic human needs. Professional boundaries and healthcare policies often hinder compassionate care, turning it into a clinical practice rather than a human sentiment.
The story of Tony, a disabled man who endured horrific conditions, is sadly not uncommon. He craved companionship and trust, but instead, he spent many nights alone, waiting for someone to turn up and care for him. The focus of care needs to shift from a tick-box list to ensuring the best quality of life for those being cared for.
Simple pleasures and new experiences become luxuries for those with disabilities. The central message is that compassionate care should be an essential part of all care, both for the sake of those being cared for and the carers’ wellbeing.Ā How we measure ourselves and our successes should no longer be based on survival but on how we are evolving and thriving. Psychologically, we are then free to reach our true potential, which is self-actualisation and ultimately, global transcendence. Then, we are no longer bound by the constraints of the human condition and our existence is more than just our mere survival of that existence.
Imagine a world where individuals with disabilities could simply assume that they will receive the necessary care they require to move forward in their lives towards self-actualisation. In such a world, we would have evolved beyond the standard of care our prehistoric ancestors enjoyed. Our aim should be to provide sanctuary and empowerment to those who need it, enabling them to live their best lives.
Artificial barriers to inclusion should not exist in modern times, as all such barriers are of our design. We have the means to feed, clothe, and house everyone. We must provide better care and, more importantly, better lives for those who need it. The closure of institutions has demonstrated that changing bricks and mortar does not necessarily bring about the desired change. Instead, it is our attitudes towards care that need to change. We should focus on the person, not the building or policy. The quality of life lived by the individual should be the testimony and standard by which we measure care.
Compassion should be our primary currency, as it measures our humanity. Survival depends on the cooperation and connection of all human beings. Our standards of care should not be measured by the day-to-day provision of care, which should be a given, but by the quality of the life lived by the individual.
We have made significant progress in the last century regarding human rights and the right to life, but it is time to progress to a right to truly live. Unfortunately, many individuals do not receive consistent, high-quality care. We must strive to create a new modern reality that honours our ancient, compassionate past and ensures a humane and compassionate world for the future.
By making compassion our currency, we bring the golden rule to the forefront: treat others as we wish to be treated ourselves. If we change how we measure outcomes in care, we can solve the problem of poor care and the attitudes in our healthcare system and society. By empowering the individualās autonomy and respecting their right to live their best life, we can create a world where everyone is valued and treated equally. Until we achieve this, we remain the brutes.
āJustice will not be served until those unaffected are as outraged as those who are.āĀ Ā Ā Ā Ā Ā Ā Ā Benjamin Franklin
For if the most vulnerable among us have their best lives, will we all not then be enabled to live our best lives? We must learn to see the global community as our tribe, just as the astronauts looking down from space do when they experience the overview effect of international unity. We can then embrace what our ancestors knew. A better life for a stranger equates to a better world and life for you.
Connection is not only our key to survival but also what defines us as humans. We must be the change we wish to see, and we must embrace the world as our tribe and family.
We will be as outraged as those who are affected because they are then our kin, just like Elvis, a valued member of the community.
He was safe, he was cared for, he was loved, and he was never alone.
Therefore, we choose to create a Village in which we empower, inspire and enable people to actualise their vision of their best life.
This Village provides a sanctuary that frees people from the burden of day-to-day care so they can focus on their lifeās potential.
An inclusive village community rather than an institutional āhome.ā People are treated as people, individuals and part of the community. Not just āinā the community but āpart ofā the community.
Our skilled carers and progressive, contemporary culture foster a reciprocal atmosphere where all feel safe and empowered.
We look beyond simply providing consistent care.
Our passion is to liberate people from fear and uncertainty and inspire them to live their best lives as valued community members.
