In well over a quarter of a century of filmmaking, I have only agonised over whether it was right to make a couple of the programmes.
‘A Family Apart’ was one of those.
Why?
Because it involved enormous suffering.
So was it right to intrude into such heartache for the sake of a film?
Was it simply being voyeuristic?
Or was there a story so inspirational that sharing it might just make even a small contribution to our understanding of how the human spirit can overcome unimaginable adversity?
George Huntington, the doctor who first described the disease (Image: Dick Meadows) I am not sure that balancing act works quite so well any more.
In an effort to cut through all the noise of the 21st-century multi-layered media world, the temptation of filmmakers to search out the freakish, the extreme, the pathetically sad, the gratuitously violent is now much harder to resist.
We appear more content to watch manufactured confrontation without too many moral misgivings.
The runaway speed of social media has opened new channels of anger and opportunity for such conflict.
So-called reality television has ousted more conventional documentary and drama shows.
Reality comes relatively cheap.
And if you are not watchful, nasty.
Spiteful too.
Entertainment is in the driving seat.
Information is often in the boot.
The idea for ‘A Family Apart’ had come from Alison, a BBC journalist colleague at Norwich.
She was close friends with a family afflicted by a disease then called Huntington’s Chorea, now known as Huntington’s Disease.
It’s a genetic degenerative condition of the brain.
It has been described as the worst disease in the world.
The programme got off to one of the blackest comedy moments of my life.
Alison introduced me to a family member, Prue Willday, who lived in Norwich.
Our sombre conversation was interrupted by David, a senior BBC colleague.
By then, I had made several animal welfare documentaries, one about swans being poisoned by anglers’ lead weights, another the story of a woman who rescued ailing seals, and a third, an investigation into horse cruelty.
“So, Dick,” enquired an amused David, “dying swans, dying seals, dying ponies, who’s dying next then?”
Prue frowned, her eyes turned to an aghast Alison and then fixed me with a quizzical quiet stare.
It was the puzzled look of a woman whose family was dead or dying.
She, too, was at mortal risk.
Then Prue grinned and laughed.
Maybe it would be OK to make the film after all.
Huntington’s is a genetic disorder that destroys the central nervous system.
It is inherited and there is no cure.
It takes its name from George Huntington, an American physician who identified it in 1872.
The signs include random uncontrollable movements or chorea from which it derived its original name.
In its early stages, the involuntary movements are often mistaken for drunkenness.
It is followed by a gradual but inexorable loss of virtually all physical and mental capacity.
It can strike at virtually any age.
Both men and women are at risk.
But what sets Huntington’s apart—as it set the family apart in our film—is that it also harbours a terrifying secret.
Sufferers are twice cursed.
That is because their children have a 50 per cent chance of inheriting the disease.
So for those children it becomes a waiting game.
But if those at risk do not develop the disease then their children are safe.
The disease does not skip a generation.
It is a genetic lottery of life and death.
Mary and Sandy Whyte had four children before he was diagnosed with Huntington’s.
When we began to film, Prue’s elder sister Susan had already died.
Susan had a daughter who would also subsequently develop the disease.
Prue’s eldest brother Nick was terribly ill.
Behind the smiles — a family stricken by Huntington’s (Image: Dick Meadows) He and his wife Marion had no children.
They had deliberately chosen not to.
As a doctor, Nick had diagnosed his own inevitable death.
Prue’s younger brother Simon had recently been diagnosed.
He had a daughter as well.
Only Prue was clear—but for how long?
She had two children and thus harboured the terrible uncertainty of a ticking genetic time bomb.
I remember returning home one night from filming and looking at my own two young daughters aged seven and four.
How would I cope with such uncertainty?
I felt a rising tide of anger rather than sorrow.
Twenty-five thousand people were believed to be at risk of Huntington’s.
Six thousand actually had the disease.
Yet no one I spoke to had ever even heard of it.
Anger at ignorance is a fine way to ignite indignation.
Here was the reason for making ‘A Family Apart’.
That resolution was reinforced by Mary Whyte, whose reservoir of unshakable strength I have never encountered before or since.
Her Catholic faith was a fortress against overwhelming adversity.
There was never an ounce of self-pity.
As someone with no religious beliefs, it can be perplexing, enviable even, to witness such fortitude.
Nick was in the same clinic where his sister Susan died.
At times it felt a little as if we were intruding on the love between a mother and her child.
Slowly I realised it wasn’t intrusion.
It was a deep privilege.
Two moral dilemmas held centre stage in the lives of Prue and her husband John, a teacher at the Norwich School.
With Prue at risk, should they have had children at all?
And should Prue have the recently devised predictive test that would either remove their personal sword of Damocles forever or leave it hanging there to fall at some future but undiagnosable date?
Prue was as frank in the film as she is in life.
They had agonised over having children for many months.
John was frightened; Prue was accused of being selfish.
She admitted she could rarely face visiting her dying brother because of witnessing what the future might hold for her.
She poignantly put it this way: you can’t take away the fear, but you can reduce the quality of that fear.
As for the predictive test, there was disagreement.
John was in favour.
Prue prevaricated.
They went for genetic counselling at Addenbrooke’s Hospital in Cambridge.
But what she described as the burden of knowledge was too great, even if the news was good.
It is a story that survivors of tragedy tell frequently.
Bearing the guilt of being the one that got away can be almost equally unbearable.
Prue decided.
She would not have the test.
The challenge for the film was to avoid making it so uncomfortable that watching it would be a relentlessly painful and negative experience.
Here you often walk a fine line while at the same time juggling those three balls which have always been at the heart of the BBC’s Charter—education, information and entertainment.
The use of music serves as an example.
It has always been contentious in documentary films.
We tried to use it sparingly to avoid sentimentality.
Nowadays it is poured on like double cream.
Music enhances atmosphere.
It builds drama, it heightens and lightens mood, it makes you smile, it makes you anxious.
In the movies no one thinks twice about wall-to-wall music.
But in factual programmes, has the blanket use of music just become an intrusive short-cut to our emotions?
The film had an audience of four million viewers on BBC-2.
Today that would be nigh impossible.
But back then there were just four terrestrial television channels, BBC1 and 2, ITV and Channel 4.
There was no iPlayer, no Freeview, no satellite stations, no social media and in effect no real competition for audiences.
Prue, John and their children (Image: Dick Meadows) For our family apart, the film was just a signpost on a road strewn with suffering.
Nick was soon to die.
His younger brother Simon also died.
Susan’s daughter Catherine was diagnosed with Huntington’s and died in her twenties.
Some years later, Prue Willday did take the predictive test.
She alone of her siblings was not carrying the gene for Huntington’s Disease.
Her children Rupert and Rachel were spared.
I find these next three sentences hard to write.
Perhaps it is because there is a finality about words on a page.
In November 1999, Rachel was killed in a car accident.
She was 18 years old.
Next week: The Diary and a daughter’s heartbreaking struggle to regain it and retrace her father’s dying footsteps along the railway of death.
‘20 I 20 Vision, a Filmmaker’s Memoir’ is published by Sad Shires Press (sadshiresbooks@outlook.com).