On 16th April 2022 Caroline March, a four star eventer, riding her horse at Barefoot Retreats, Burnham Market, was knocked unconscious following a fall from her horse, whilst also suffering a permanent spinal cord injury (SCI). She joined the tiny 0.07% of the UK population with an SCI, currently around 50,000, with roughly 2,500 new cases being added every year. Worldwide the number of new cases is between 250,000 and 500,000.
Most injuries are due to preventable causes, with road traffic accidents, falls and violence being the most common. As a group we are two to five times more likely to have a premature death than people without, and survival rates are much lower in low to middle income countries because they do not have the health and financial support to provide necessary resources, which are considerable. In low-income countries preventable secondary infections from untreated pressure ulcers is still the primary cause of death. I came very close to joining those numbers two months after my neck was broken.
Mortality risk is highest in the first year after the injury and this risk increases with the injury level, which means the higher up the spinal column the increased loss of physical function. Paraplegics have full hand and arm function and have increased core function the lower the injury on the thoracic vertebrae. Tetraplegics lose hand and arm function the higher the injury on the cervical (neck) vertebrae. As a general rule, the higher the injury level, the higher the level of dependency. Many tetraplegics can live almost independent lives with the right amount of care, equipment and living environment.
On the 24th March 2024 a letter was posted on Caroline’s public Facebook page. ‘It is with great sadness that we announce the passing of Caroline on Saturday 23rd March 2024. She wished to leave this final post in the hopes you may gain an understanding of who she truly was and the decisions she made. Please read her message with an open mind and be respectful for the sake of her family and friends. She will be greatly missed.’
SCI is a devastating condition that often results in significant physical, psychological, and social consequences for affected individuals, potentially leading to even more serious outcomes such as suicide. Understanding suicidality in the SCI population is of utmost importance, as individuals with SCI reportedly have more than a three-fold higher suicide incidence than those without SCI. It has also been observed that 34.8% of individuals with chronic SCI experience suicidal ideation, with 17.3% having attempted suicide and a maximum of 11% resulting in fatalities.[i]
Caroline’s post attracted 11,000 emojis, 1,500 comments and 1,900 shares. The comments seem to widely follow in the vein of: “all my respect”, “total respect”, “God bless you for your bravery”, ” this is devastating, but what a brave girl”, “tremendously brave and honest”, “this is one of the most powerful things I’ve ever read”, “nothing but admiration”, ” such courage and fortitude with total honesty”, “what a truly inspirational and brave woman she was”, ” a powerful message in there to always be yourself”, “what an amazing courageous woman”, “your frustrations so clear and understandable to anyone with a shred of empathy”, “in writing that letter you’ve become a fucking legend”, and so on.
This letter on Facebook was subsequently widely shared and reported on by news outlets including The Daily Telegraph, The Times, The Mirror[ii], Sky News, ITV, Yahoo, LBC, Daily Record, Irish Mirror and Horse and Hound.
Caroline’s words telling us we have absolutely no right to judge her decision and ‘silence the voices’, seem like an unreasonable expectation given the choice to post on a social media platform like Facebook. Her family have chosen not to provide more information about the details of her death, so reports widely believe it was an assisted suicide, based on her final letter, and without evidence to the contrary: “Assisted suicide is always something that I believed in and have always said that if anything happened to me and I was forced into the predicament that I couldn’t have the quality of life that I wanted, that would be the route I’d take. Not going to lie, [I] never imagined it would come to fruition but here we are.”
In The Times, Melanie Reid, a tetraplegic who broke her neck at the same level, as I did, just a few months after me in 2010, and of roughly the same age in our mid 50’s, wrote in her weekly column. “Those who judge Caroline March have no right. She has lost too much. The talented horse rider died by assisted suicide, two years after being paralysed.”[iii]
Reid also writes, ‘her words were searing, beautifully written, brutal and utterly honest. Liberated by the decision she had made to end her life, she said it as bluntly as anyone who is paralysed has ever publicly done: hers was an unbearable existence. She had lost too much. I understood and empathised with every single word. Fourteen years ago, playing around at the grass roots of the same sport, I fell off my horse and broke my neck. I spent a year in hospital and live in a wheelchair as a tetraplegic.”
Assisting or encouraging another person’s suicide is prohibited by Section 2 of the Suicide Act and euthanasia is illegal and can be prosecuted as murder or manslaughter. Assisted dying is not the same thing as assisted suicide.
The Daily Mirror shared the letter in full, amid a campaign to legalise assisted dying in the UK, led by Dame Ester Rantzen, who has been diagnosed with terminal lung cancer, effectively linking March’s assisted suicide and Rantzen’s terminal illness as of a similar nature.
Over the next few days I re-read Caroline’s letter and looked at many of the comments made on social media and in the press and, in particular by Reid, who seems to have appointed herself as the moral authority on SCI, formulating her own hierarchy or scale of suffering, able to judge who amongst us has lost “too much”, demanding we remain silent and that it is none of our business. She forms her own judgement of March as, “highly intelligent, rational, mentally aware, she had before her accident shaken off the depression she’d suffered.”
I am no psychiatrist but Caroline’s letter seems to clearly show somebody battling with many deeply embedded emotional conflicts, contradictions and inner turmoil, despite her claim that she is so “mentally aware”. Her Facebook page, post injury clearly shows her admitting that she was really struggling. The letter makes statements that are simply not true. The most common pathway to suicide is through depression.
I began to wonder if many of these were in some ways, both revealing and problematic for those of us with spinal cord injuries, as well as all those other people dependent on using a wheelchair, and the disabled community at large. Words carry meaning and are not without consequences, and what is stated as truth does not make it so.
Caroline chose to use words from Alan Watts, the self-styled philosophical entertainer, “I’d rather have a short life that is full of what I love doing, than a long life spent in a miserable way”. This appears in contradiction to his (probably) most famous quote, “The only way to make sense out of change is to plunge into it, move with it, and join the dance. I have realized that the past and future are real illusions, that they exist in the present, which is what there is and all there is”.
The letter itself together with Reid’s opinion would seem to reinforce many archaic embedded stereotypes regarding disability: that our disabled lives are a burden on society; that disabled lives are of lesser value; that disabled lives are less human than able bodied; that disabled lives are full of suffering; and that disabled people cannot live meaningful, joyful and fulfilling lives, devoid of hope.
There is ample evidence that shows an important aspect of our humanity is that we can change our beliefs in response to evidence.
Taking another example, “I’ve always believed you can’t change the DNA in your head, what makes you tick as an individual, your beliefs and your loves”.
We draw our moral lines in arbitrary places. We might believe we’re guided only by universal values and proven facts, but often we’re swayed by deep themes of which we might be unaware. We tend to associate the imagery and sensations of our earliest childhood with what is good and right. When we see something that chimes with these images we are powerfully drawn to it and attach moral value to it.
98% is an estimate of how much of human thought is unconscious. Most of our ideas, thoughts and opinions exist in our brain without us having any awareness of them. They just seem to automatically be implanted there, like the hardware in a computer.
The science of mind has lit up this vast landscape of unconscious thought — the 98% of thinking our brain does, without us being fully aware of it. We have an idea that it exists, that it is there, without really knowing the size and extent of it, and how big a role it plays in our everyday lives. Most unconscious thought does not just automatically or magically appear in our brains. It is implanted and shaped by the world around us and the stories we tell, read, hear and see. It has been suggested that we might better be called the Storytelling Ape, rather than the Wise Ape (sapiens). Framing plays an important role in shaping and maintaining these unconscious beliefs. DNA plays virtually no part in how our unconscious thoughts develop and work.
These unconscious beliefs help determine our deeply held moral, social and political beliefs. Powerful metaphors and frames, often repeated by politicians, teachers, books, friends and the media, sink into our unconscious and create a concept of “common sense” — even when the ideas behind them are the opposite of sensible. Our sense of identity is about the stories we tell ourselves and so the story both March and Reid are choosing to tell us about disability matter. We have a right to examine, challenge and question them.
They are retelling stories probably held largely within their own subconscious, developed through their own upbringings and lives. We find safety and comfort in the familiar and the routine and take for granted so much of what we do subconsciously, and the first thing we hear about a topic is the one we tend to recall and accept. This leads to the illusory truth effect, where repeated information is often perceived as more truthful than new information; what is familiar is judged to be true. This effect is very deeply rooted.
Caroline did not seem able to reimagine her life in a different state than an able-bodied one where the ability to both walk and a ride a horse with great skill provided such core elements to her sense of identity. An SCI challenges this complex interwoven sense of identity, place and worth in the world, deeply and profoundly.
For the sake of those who have little or no knowledge of SCI I would like to challenge some other points made.
An SCI does not mean you can’t:
- drive a vehicle. A vast array of aids are available to enable a whole range of disabled people to drive cars, vans and lorries.
- put on sexy underwear.
- use a quad bike, particularly for a lower to mid-level paraplegic.
- ride a horse, if you are paraplegic. Lee Pearson and Sophie Christiansen whilst not SCI’s, demonstrate ways to make it possible.
- find ways to look for adrenaline.
- go out with your dog or dogs.
- become pregnant and have children, if that’s really all you ever wanted, but it would certainly be more challenging.
- find alternative ways [CW1] to empty your bowels; other options are available including laxatives, suppositories and bowel irrigation. It does not have to mean that you have to, “finger your asshole every morning to take a shit”.
To make the case to end one’s own life the reasons, surely, must be extraordinary, justifiable and rational, so I find it very hard to find agreement with somebody who states, “I kill things for fun”. The use of the word “things” to describe living creatures as objects is revealing as it assumes primacy over other life, presuming they have been put there solely for human benefit and pleasure.
We like to think of ourselves as the most successful species because of our ingenuity and adaptability. Losing the ability to walk does not mean we have lost this ability to adapt, we must keep finding new ways to do so and to tell new stories, everyday stories about the lived experience that begin where we are, and not only where we were. Taking notice, bearing witness to what is around us, to make that a safe place from which to look with our intact senses, sight, smell, taste, hearing, touch, to develop and imagine new relationships with all that is around us.
Every life is a gift, a unique and precious one. It is truly sad when the reasons to live it might appear lost and beyond any hope.
[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10620485/
[ii] https://www.mirror.co.uk/news/uk-news/caroline-march-who-died-assisted-32442308
[iii] https://www.thetimes.co.uk/article/those-who-judge-caroline-march-have-no-right-she-lost-too-much-f98p0hhww