Gregarious family life and powerful love intimacy is real in the life of people with broken bodies
Charismatic , charming, and humorous, Robin Francis Cavendish is another well publicised story of a man who was not ‘disabled’ by life or society in spite of his massively damaged body. The 2017 film Breathe, directed by his son, is based on the true story of Robin’s life.
But does the film tell the full story… of a quadriplegics normal life?
Robin refused to be imprisoned by the physical hangover of polio. He did not want to just survive a devastating disease he wanted to truly live life. In spite of his comprehensive derailment by being a ‘responaut’, that is, a person wholly reliant on a machine that breathed for him. Robin through personal circumstances was able to live his normal life with his wife and son and make a difference in the world.
His story began in Middleton, England on 12 March 1930 when his mother Violet gave birth to him into an upper-class English family. He was sent to boarding school at the age of 7. In childhood he loved to go to the Peak District with his ferret to catch rabbits to be eaten in a home cooked meal. Robin’s father, Brigadier Ronald Cavendish was killed in action in Burma during the second world was when he was a lad of 17 years of age.
As a young man, Robin attended Sandhurst Military Academy and served seven years in the British Army’s Kings Royal Riffle Corps, rising to the rank of captain. When he left the army he and a friend started up a tea broker company and travelled around Asia and Africa buying tea.
In June 1957, after falling in love during a whirlwind romance, Robin married the love of his life, Diana Blacker. Their physical love relationship lasted until Robin died in 1994. I emphasise physical love relationship because that’s what they had for over 37 years. Although life was not always full of bliss, as a couple, they continued to kiss, cuddle, lay, and embrace the pleasure in the feel and touch of each other. The memories of the emotional love Diana shared with Robin will stay with her until she leaves this physical world and while Robin’s spirit soars high and wide his spirit is always with Diana.
Both Robin and Diana came from Aristocratic English families. The doting couple travelled. Then in December 1958, while living the good life under the African sun in Kenya, Robin was infected with the polio virus at a time vaccination programs were helping to eradicate the viral disease across the globe.
Diana was seven months pregnant with their son Jonathon when Robin, at age 28, became sick with the poliomyelitis virus on a different continent to American Paul Alexander who also contracted polio in 1952 as a six year old boy. The polio experience for both these vulnerable and unsuspecting human beings resulted in an unthinkable paralysis from the neck down.
Left almost completely paralyzed, unable to breathe without a ventilator, Doctors informed Robin while he listened to the monotonous wheeze of his breathing machine that sighed in and out every minute of the day and night, that polio had caused him to encounter a life long neck down paralysis.
The doctor stated that medical know how gave him a grim future forecast. Robin’s life expectancy was predicted to a maximum of three months in hospital, two weeks away from hospital, and without his breathing machine his life would extinguish within two minutes.
Robin was unable to breathe on his own, or do anything else on his own except move his head, think, see, hear, and feel. Rather than using a common place iron lung to do the breathing for Robin, he was able to benefit from the newer method of respiration by inserting a tube to inflate the lungs via a tracheotomy.
A tracheotomy is a surgical procedure which cuts an opening into the windpipe so that a tube can be pushed into the opening to assist breathing. Pumping air into his lungs through a tube inserted into his chest was Robin’s lifeline. If the pump stopped Robin would die within two minutes.
Diana was told by doctors the paralysis was permanent and that no one with Robin’s degree of ‘disability’, anywhere in the world, existed outside of a hospital and the mercy of a person in his state was that they did not usually last long. In other words Diana was told to expect her husband, her love and lover, Robin, to die imminently.
Robin had suffered what no one can deny was a medical tragedy. No one could fix his body that polio had violated. There was no known cure. He understood that fact. He had to grieve for his lost body functionality and what that meant in continuing to live in the world he was used to living in.
Robin had to face mentally and emotionally, full frontal, what the limits of his physical body would impose on him, his wife, and his infant son, if he continued to live. Without hope of a vision of more than the doctors were condemning him to he saw life certainly was not worth living.
For the first two years after contracting polio Robin sank into a deep depression, he wanted nothing to do with his newborn son and had to relearn how to speak. He would try and persuade anyone who came along to turn his breathing machine off. He made no secret of his desire to die. But he did not die.
Diana, his wife, wanted him home with her and their son and insisted to Robin he had importance that could not be diminished by his broken body. Stoically Diana helped her husband see that they had power to open the doors and be set free in a world of their own making. Breaking free from the trappings of hospitalisation would allow Robin’s mojo to return.
In hospital Robin was forced to live with his air machine lying flat on his back in a ward of people with vacant, hopeless faces who like him felt imprisoned. After 12 months the family flew back from Africa to Britain. Against all medical advice, Robin and Diana decided to leave the isolating hospital life and resolved to find a way for Robin to live life, for however long, to the full. Robin was discharged from hospital in 1961 and the family went home, to their imposing yet somewhat dilapidated country house in Oxfordshire, where no one could tell them something could not be done.
People do not die because they cannot stand upright and walk. Robin was not sick his body had paralysis. Being unequivocally laden with paralysis commanded an avantgarde living style.
The family is the most basic form of human community in which being husband and wife is a mutual gift of self that creates an environment of unique and individual destiny. Diana’s love and tenacity brought Robin out of his depression so that he did live a fulfilling and adventurous life at home with his wife and son for a further 35 years.
In Britain, the home care set up had never been known to have been attempted for someone with Robin’s degree of paralysis before and meant ensuring the ventilator never stopped was their sole responsibility. Robin had decided he wanted to live with his wife and for his wife. He accepted the risk of dying because he did not want to just survive he wanted to truly live.
Once home Robin never suffered depressive illness again. Instead he sought quality of life for himself and others. Robin and Diana asked their friend Teddy Hall, to make Robin a wheelchair that incorporated a battery-operated respirator, a little later they added a motor making a mechanical chair. Teddy Hall was a polymathic Oxford professor who with others invented freedom giving devices. The P.O.S.M. invention allowed Robin to use a bell, adjust the central heating, use the phone and television with just a slight move of his head. Over his life Robin had ten different freedom giving wheelchairs.
Robin’s home-made wheelchair, first fitted with a battery-operated respirator pump, and later with a motor not only allowed him to breathe but provided him the mobility he longed for. Gregarious by nature, Robin loved to leave his bed and join his friends and family in the sunshine on his lawn and to venture further on other outings and holidays. He would risk dying to keep his capacity to live his life under his rainbow.
As a couple Robin and Diana shared an incredible love story and achieved a series of freedom breakthroughs for people with severe body damage. They demonstrated that through pure love, devotion, and a staunchness to honour the dignity of the human essence, joy and fulfillment are a natural consequence. Not every day was perfect, there were plenty of swings and roundabout times.
Robin enjoyed reading the newspapers and questioned relentlessly. Friends they entertained came to enjoy a normal family home and did not experience an invalid’s clinical accommodation.
After Robin with the help of his friend Teddy Hall developed the first wheelchair with a built-in battery powered respirator Robin and Diana went on to secure funding for more wheelchairs to be built for other people living in parallel broken bodies.
The family travelled extensively around Britain and foreign lands in a home-modified van complete with a hydraulic lift to transport Robin’s wheelchair. His son was around 12 before he realised his dad was different. To him dad was dad who had always been the same fun-loving man.
Robin had a passionate calling with the mission of transforming the standard of medical care for people with a polio hangover by Berocca-ring them back into society with his special freedom giving wheelchair with respirator design.
Robin was not a hero or did he live his life using superhuman feats during daily physical activities. He was a normal pioneering man who found himself in a difficult life situation. He was 100% reliant on other people to propel his life through the care of his daily physical needs.
A gift Robin and Diana gave to the world was their joint vision that a person with a body severely affected through a viral disease was not sick and could still live a normal life. Mobility, access and an overarching quality of life was more possible than most people in the medical world had imagined because Robin was not a patient. As a married couple they were in the drivers seat in understanding what they needed in their normal life.
Robin and his friend, Geoffrey Spencer, a doctor who cared for impaired and respirator-dependent people at St. Thomas’ Hospital, London, founded a charity in 1970. Refresh was a charity that built a holiday home, Netley Waterside House on Southampton Water, and funded holidays there for people with severe impairment.
In 1994, after years of using the breathing tube, the lining of Robin’s lungs became irritated and he started suffering severe bleeds. He was aware that at any time he could drown in his own blood. Knowing how traumatic that would be for himself, Diana, and his son he asked their permission to be allowed to die peacefully. And he did aged 64.
Robin Francis Cavendish did not commit suicide. He was not assisted to commit suicide. He was allowed to die a peaceful, instead of a traumatic, death after doctors told him 35 years earlier that he had no more than a few months to live because his body was so severely damaged he would not survive.
When people can no longer breathe on their own a panic sets in. That is why many sick people in their end of life care are given morphine and Valium to ease that panic which then allows a peaceful death.
Robin and Diana were both advocates and activists, not for any ‘disability’ model, they understood freedom giving equipment and affordable lifestyle choice would allow normality to consume their world. They put down their bundle of burdensome sticks and rearranged them to make carrying them easier. In doing so they turned a feared life of imprisonment into a life of their own making. They took hold of their own skills and abilities without quite knowing where it would take them and together ventured into their brand-new way of living. Normal people living their unique, nevertheless, normal lifestyle.
‘Disability’ leadership, wearing the badge of advocacy, has increasingly become involved in parliamentary campaigns to improve ‘disabled’ people’s human rights, to secure their own operational grant funding, and to argue the services required to support their pitch perfect image of ‘independent living’.
Modern ‘disability’ advocacy by its very nature is narrow minded and has a self-serving agenda. The power and energy of the movement is derived from promoting messaging to portray an injustice to the downtrodden. The illustrative image comes through a protective lens built from the best materials available and has polarizing filters to reduce glare and improve saturation. The ricocheted foretold result is the grass looks greener and the sky looks bluer in the reformed pitched-perfect world.
As ‘disability’ is both a biological condition and a social construct advocacy/activist work ignores a major part of inflicted people’s biographies and does not consider those who do not consider themselves ‘disabled’ and part of ‘the disability movement’.
Humanitarian conquest is lost by fighting the wrong war.