Four lessons from 40 years of campaigning for justice

The Bye family have spent 40 years campaigning for justice for their daughter’s death, and for society to learn important lessons from its failings.

“Men are never more awake to the good in the world than when they are furiously awake to the evil in the world.”
— G. K. Chesterton

I recently had the pleasure of spending time in the company of Derek and Joan Bye. They have campaigned for 40 years for truth and justice in the context of the medical profession. Their quest was prompted by the appalling circumstances of the death of their daughter, Helenor — with the hurt compounded by the subsequent cover-up.

wrote about this case last year, and the necessity for a statutory Duty of Candour if we are to learn from our mistakes. This is not a minor historical matter, as the drug Epilim is a “Thalidomide 2.0” disaster, which has resulted in avoidable death, injury and disability for tens of thousands of people, with huge costs to their families.

These problems will be repeated both within the medical profession, as well as in new technological domains like smart homes and cities — unless we act differently. Having spent more time with the Byes and reflected on their story, I would like to share some more thoughts and conclusions.

There are three things that I feel we should bear in mind, and one critical final take-away.

Infosec, meet govsec

I have written a considerable amount about the role of psychopaths in society, and “pathocracy” as their culture. As Jung has told us, “No tree, it is said, can grow to heaven unless its roots reach down to hell.” Only by understanding the worst evil and how it arises can we raise our aspirations for righteousness and compassion.

We all know that preventing bad things from happening requires proactive preparation to mitigate risk. In the context of IT, we understand the need to secure systems, and have a large industry of information security professionals and products to do it. There are standard processes like penetration tests that we use to stress IT systems and map their weaknesses. The result, whilst far from ideal, is generally satisfactory.

Our systems of governance can also be seen as software, but running on human ‘wetware’ instead of computer hardware. These lack a comparable industry that scopes out the ‘attack surface’ and hunts for weaknesses. There is no equivalent of a transportation safety board for governance system ‘crashes’. The systemic failures remain unfixed, possibly because this serves the need of pathocratic power.

In the case of the Byes, a psychopathic physician was able to work the system to get a corrupt coroner to cover for his errors. It is presumed that they were both Freemasons, but that is not certain; even if untrue, the potential for covert alliances is there. We definitely have seen similar cover-ups before, such as with the Hillsborough disaster.

The enabling factor was that the coroner had discretion over whether evidence was given under oath. A discipline of ‘govsec’ would locate these procedural ‘bugs’ and eliminate them, so as to prevent injustices. Corruption, crime and carelessness need to be seen as ordinary parts of human nature and life, not some extraordinary and unforeseeable surprise.

The need for long-term ‘skin in the game’

Iatrogenic harm is a fancy word to describe medical problems caused by medicine itself. It is the third leading cause of death; if an apple a day keeps the doctor away, then apples are officially a wonder drug! The way that medicine is presently practised and rewarded is to transfer the cost and risk of iatrogenic harm away from the medics and onto other parties.

The social care system is hit with the full costs of the errors of the health service. This resembles the way that IT systems were developed and deployed in the traditional “waterfall” method. Over the last 20 years there has been a mass shift towards “devops” management, which means developers have “skin in the game” for whether their software is operable and maintainable.

If we are to create truly humanised systems of technology and governance, then we need to find new “devops” ways of incentivising “here and now” choices to account for their long-term impact. As an example of the problem — and its solution — consider the supermarket loyalty card. This today encourages shoppers to over-buy refined carbs and nutrient-poor processed goods that kill them with diabetes and cardiovascular disease.

Today’s supermarket loyalty card is entirely about your loyalty to the supermarket; there is no reciprocity or responsibility in return. But we can imagine this changing: for example, what if your supermarket bill was partly paid via a life insurance policy, structured for long-term wellness? Incentives matter, and by changing them we can adjust behaviour of both the supermarket and shopper towards healthy “precision eating”.

Consent is not a substitute for conscience

The consent notices for cookies and tracking on the Web are unmissable, especially following the EU’s GDPR regulations. I am no better than you are, frequently casually hitting “accept” because I am too lazy to dig into all of the options on each website to decline.

One of the things I have learned over the last few years is that there is a kind of “honour code” for psychopaths. They like their victims to appear to (appear to) volunteer for their predation. This can be done by the psychopath advertising in advance their intention (in some obtuse way), and then treating a failure to object as consent.

The endemic problem we now face is that consent is being used as a substitute for conscience, or that it even overrides it. In the case of the Byes, they were often presented with consent forms in the most stressful and inappropriate situations, so as to create a veneer of legitimacy for what was happening to their beloved daughter.

This plays out in other domains, such as the tussle between Common Law (aka natural law of the land) and Roman Law (statutes and contracts) or Admiralty Law (law of the sea). It is hardly a novel insight to state that not all statute law is morally defensible, and neither does adherence to the law automatically result in a morally upstanding life.

Our technological systems have become over-reliant on consent to a contract or adherence to statute law. Noam Chomsky frames the problem as being the manufactured nature of consent. However, my contention is that is an unhelpful framing: the real issue is that we are focused on consent in the place, instead of conscience.

How might Google or Facebook behave differently if every choice potentially had to be justified to a jury of peers against the standard of the Golden Rule?

The real lesson from the Byes’ suffering

Each of the above was a candidate for the big take-away the 40 years of campaigning of the Bye family. But on reflection, none of them is the winner – something else was far more important.

I had presumed the figural players in the drama were Helenor herself and the cruel hospital consultant who practised unlicensed and unethical experiments upon her. I was wrong. At the risk of an inappropriate analogy, it is a bit like Star Wars, where we imagine Skywalker, Vader, Leia and Solo are the leads, but really it was R2D2 and C3PO all along.

In this case, the figural character was a Professor in the local university, to whom the Byes had turned for help. He had been genuinely caring and supportive — with one vital exception. At the critical moment, he colluded with the cover-up. Years later, at the end of his life, he turned to the Byes for forgiveness. They refused to give it, since his request was more about salving his own guilt, and lacked sufficient contrition or restitution.

Psychopaths will predate on other humans. They exist, and that’s what they do. The most important person in the story is the non-psychopath who lacked the courage to do the right thing, even if it meant loss of social stature and risked career harm and social ostracism. In other words, the most important player in this story is… someone just like you.

Are you willing to do what it takes to help deliver a world to future generations where we have learnt from the painful and tragic lessons of the past?

“The subtle and deadly change of heart that might occur in you would be involved with the realization that a civilization is not destroyed by wicked people; it is not necessary that people be wicked but only that they be spineless.”
— James Baldwin


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