encephalopathy (CTE). Rick Friedman /Sports Illustrated/Getty Images
Above: Bennet Omalu, doctor, physician, neuropathologist whose work to understand the impacts of sport related brain injury was portrayed in the 2015 film Concussion
was about how the pathologist paid his employer so he had time to research a hunch on the brain damage American footballer Mike Webster had endured in his career that led to a devastating neurological decline, wasn’t just discovering a new form of degenerative brain disease.
In questioning how and why the medical and scientific, historical and organisational environment that had neatly separated, filed and locked down all the myriad historical representations of sport, work, war and crime related brain injury that separated them from the social conditions of their production, Bennet also broke through many levels of institutional gatekeeping.
The families, new generations and society generally are beginning to see social justice: we’re all benefitting from that.
I found his work to understand brain trauma within the social conditions of their production referenced in a great investigative audiobook The Beautiful Brain by investigative documentary maker Hana Walker Brown.
The title is taken I guess from a work by artist Cajal known as the father of modern neuroscience: (he’s what my niece called a scientartist):
(Cajal’s influence can be seen today in our local communities):
The Beautiful Brain was produced in 2019 about the life and death of West Bromwich footballer Jeff Astle
Jeff was a header centre forward footballer, praised for his jumping, leaping and heading balls: in thousands of training sessions, practice and matches his colleagues would aim for his head and he’d leap up and nod the ball. The balls they used were leather and could become very heavy with absorbed water when the pitch was wet. Although we have lighter balls now, the speed of the balls, the velocity and impact of the football (up to eighty miles an hour) is a real danger to the head and body.
In uncovering the history of Bennet’s understanding of sporting head trauma while investigating the documentary, Hana asks questions about domestic violence and brain trauma.
The trauma Jeff’s brain suffered throughout his footballing career led to an initial diagnosis of dementia but it also coincided with work Bennet was doing independently in Pittsburgh. There had been work done into the trauma of mass sport, trauma in military and war environments from the beginning of what we call forensic science and medicine but the ability to act on the research is always constrained by what Bennet calls the tendency in the academic and scientific communities to prioritise organisational needs via professional rituals of control over the wider need of society.
Bennet worked to identify football injury trauma in is now defined as Chronic Traumatic Encepalopathy (CTE) in the brain of footballer Mike Webster with the research team at Pittsburgh University.
Although the subject had been studied and the scientific community was well aware of ‘punch drunk’ syndrome, (documented in 1928: see the way the language of excuse and victimisation was routinely doled out in research where these boxers who had been punched drunk and then were blamed for the effects and called second class fighters)
The research community then hadn’t been an activist community in the sense that the research was done to place the specimen of the boxer in a vitrine.
In removing what had happened to the boxer in the course of his life he became little more than an object or specimen, individuated, objectified then locked down.
Bennet immediately saw this history of research as inimical to the progression of a humanistic activist science and medicine. The history of ownership and succession in the lucrative business of sport, war and violence in society were often based on historic class and race exploitation and the legacies of inequalities (injury in the military, boxing, American football, wrestling, ice hockey, mixed martial arts, rugby and soccer), so the issues Bennet wanted to raise when he spoke to the dead Mike Webster’s brain and promised him that he was going to find the truth were live issues to him.
Through his courage back in 2002, they’re now live issues to us.
It’s now becoming acceptable to connect the social conditions of production with a dynamic process of academic and scientific endeavour. It’s now ok to understand that the version of science as ‘scientificity’, as Thomas Picketty in Capital In The 21st Century called this lack of authenticity. A lack of authenticity which is based on inter organisational and intra-professional rituals rather than the real grounded relations of science and medicine with a social context and accountability in human and socially relevant ways.
The shocking way the sporting world has slowly admitted the value of research into its practice is mirrored in the lack of transparency into the relationship between pharmaceutical companies and the administration of medicine trials. It’s shocking to realise that most medicines are tested on young people because it’s cheaper and easier. (see below) but that leads to drug poisoning in older adults who are maybe prescribed many drugs, see many practitioners, have a fragmented experience of healthcare.
We need a new understanding of who research is for and to break down the segmentation approach to research, testing, trials and distribution into a much more organic notion of humanity.
In the UK the lack of social representation and accountability by pharmaceutical companies in the production of medicines used on people who aren’t part of the trial process was tentatively questioned in the Science and Technology Select Committee in 2019, just before the Corona Virus pandemic:
Corrected oral evidence: Ageing: Science, Technology and Healthy Living
Tuesday 29 October 2019
Evidence was presented to say that 70% of all hospital beds occupied by older people were because they’d overdosed on drugs that had only been tested on younger people who needed higher doses.
Professor Sir Munir Pirmohamed: ‘Polypharmacy is a major problem. Most of the patients I see now are on 10, 15 or 23 drugs—a huge number of drugs to take, let alone to remember to take. Those drugs are used at conventional doses that have been tested in younger populations who fulfilled exclusion criteria for trials. They have been tested in people who do not have multiple diseases, so when we use a drug at a dose licensed at the moment, we are often poisoning the elderly because of the dosing we use. This is largely because your renal, hepatic and other functions decline as you get older, and you have drug-drug interactions. To treat the elderly for the future, we need to think about how to dose them better. Paracelsus, 500 years ago, said that the dose is either the remedy or a poison. That is still true; we need to think about how we dose our elderly. They may require multiple drugs, which is important for treating their diseases, but we need to treat them with appropriate doses as well, which we do not’.
In his autobiography “Truth Doesn’t Have A Side”
Bennet recognises in sport, the problem of science and the markets around it, as a passionate advocate for humanistic, practical, science and human centred (even hand held, screening and scanning technologies) that take us away from big machines into regenerative possibilities of regenerative medicine and reversible reactions. If we know the steps in a process, if the steps are visible and open source then there’s more of a reciprocal relationship, more of a dialectical, reciprocal relation between science, academia and people and campaigns can change things quickly.
We can all help. We can participate and engage, shape the services, ask for new ways of doing things.
In his work, you begin to wonder why no-one in the medical and scientific community felt they could act to change the lack of connection between research and action. Or if research was done and was burgeoning in the way the scientific community shouted back at the work of Bennet why there had been so little action if almost everything Bennet discovered was already known?
This article in the Washington Post is a detailed character assassination of Bennet Omalu.
A couple of years on from that article we’re now in a cultural and social space where the murder of George Floyd (and the quick thinking of 18 year old Darnella Frazier to film the event) has opened the world’s eyes to the harm inflicted by an unaccountable police service against black people. In the Washington Post article quoted above Bennet is presented as a snake oil salesperson and interestingly an image where he is an expert witness in the trial relating to police multiple shooting in the back of Stephon Clark on March 18th 2018, the Washington Post article the photo (without the byline where the evidence is reported as vital) is misused to make him appear as a conman without expert qualifications to prove the ongoing argument.
Now we’re thinking more about the social context of events, Bennet’s work takes us in a critical way to look again at the way our world and certainties have been constructed:
It makes us look at the impact of war on medics and medical ethics, how it feels and felt to be a medic on a battlefield, in a war zone: even participatory research can be misused.
Sport has an elite history linked to imperialism, war and ownership of people and an unshared history of post traumatic trauma. Bennet grew up in Nigeria, his father dying in the Biafran war and came into the american system with a contrapuntal understanding.
A contrapuntal reading means reading a text “with an understanding of what is involved when an author shows, for instance, that a colonial sugar plantation is seen as important to the process of maintaining a particular style of life in England” (Said 66) It’s looking at the support structures for an idea or sense of what we take for granted as normal).
Bennet brought us through his work, an understanding of the things other people (who grew up with a different experience) might see as fixed, taken for granted, normal. For example Bennet it wasn’t normal to accept that level of repeated injury. He could see the complexities of sport and where its values and behavioural norms came from in a way that many of his research colleagues and organisations involved in sport might be able to ignore, choose to ignore or make irrelevant because the real purpose of research is to lock it down and own it rather than share and distribute it.
When, as a forensic pathologist, Bennet looked at the brain of the American football player Mike Webster in 2002, (who like Jeff Astle, had symptoms of severe neurological decline and frightening, self destructive behaviour), he wondered about the experience of being Mike Webster, as a sports person, of playing the aggressive contact sport over time had impacted him and his decline in the much the same way that a mum would, a wife would, a brother would. Bennet was brave because he was humanising the cold, fragmented understanding of the morgue and the purpose of forensics.
As a Nigerian in the American system, one of his basic queries informing his research was about the human impact of being an American footballer, how was this life taken?
It was a question that the American research community would see as unprofessional: a question though, that would show up the infrastructural failings in the society and the tangled ethics provenance in the supply chain between the public, the company, the government and the public good.
It was also a question that Dawn, daughter of footballer Jeff Astle wondered, after her experience of medical silence on a promised longitudinal study from the Football Association when after her father’s traumatic death from choking, at 59 after a long deterioration into dementia, the Coroner had ruled that on the evidence of Derek Robson (forensic histopathologist and neuro expert at the Queens Medical Centre) that her dad had died from industrial injuries: ie from the effect of years of heading the ball.
The Football Association promised a longitudinal study that fourteen years after her father’s death hadn’t materialised. When you consider the supply chains around football and the way investigative journalists had to fight to get their stories out in the football world
it’s not surprising:
So we can see how because Bennet wanted to work in real time, to input data about a real, lived, worked life could be properly audited inside the medical and scientific establishment he’s been ostracised, excluded and disconnected.
When he did his research, Bennet was also looking at the history of hidden truth in organisation’s activities where this history has included those exploitations as assets that it locks down but in the organisation’s understanding it has no history…and no meaning.
There was no sign of anything unusual in Mike’s brain at first, yet when Bennet published his further study had found ways to isolate and present the areas where trauma could be located and described.
It appeared to him that it was an untold story that because he was telling it in isolation, had stuck his head above the parapet to include the individual harm and the moral injury in conforming to the organisational norm, the organisational culture that accepted this kind of exploitative harm, it’s legacy from other unspeakable ways of controlling people, as part of life.
Bennet had identified four different types of trauma and had at a stroke, fought a battle in the war of inclusion, representation and wholeness as a primary goal in research and medicine. The medical and scientific research establishment dipped into their massive collection of locked down assets, resources and research to produce the counterfactual that ‘they’d always been doing this research, that the findings of the research were fundamentally flawed…etc…etc’
The point is, as families affected realise, it’s about power and the abuse of power, networks inside organisations that are only accountable to the privileged networks that select on the basis of which school, which, college, which university which sports team as attributes more important than the levelling aspiration of a vocation and ethics of a public good and a real sense that your learning material is your relationship with your patient and subject. Accuracy and honesty in research and medicine will come when we re-humanise health, human activity and wellbeing.
Bennet argues for a more wholistic understanding of the continuum of health rather than a continuing fragmentation and battle. Peace, if you like, not war.
CTE type is marked by “moderate to frequent” tau tangles in the brain stem, and “none to sparse” tau tangles in the cerebral cortex. Brains can develop tau in these areas through normal ageing, experts said, as well as through other diseases.
The real issue though, is how little insight and wisdom about violence, harm, inclusion and exclusion is living evidence that hasn’t been accepted. For example, brain injury through domestic violence against women (which is highlighted in Hana Walker Brown’s The Beautiful Brain) isn’t considered first order evidence in many of these research contexts. Hana is writing about how stereotypes about women “Hot Mess” for example, denies the validity of experience.
Using evidence from wherever and whomever it comes could have changed the health outcomes of many people in many communities but instead the medical and scientific establishment has accepted (for hundreds of years) those harms of war, those ways of using communities for research (sometimes without consent) and usually without a sense that there’s an accountability to a community involved.
Organisational self centredness actively ‘disappears’ a sensible community that a scientist, medic, technologist starting their education and training might believe they’d be working with and for, (a community of mums, dads, children, teenagers, young middle aged and older workers, academics, professionals, technicians across the lifespan on the organisation’s doorstep): people with abilities, aspirations, questions, problems and turns it into fragments, segments, conveniently depersonalising people in the name of a ‘detached perspective’ that is really full of assumptions, prejudices and preconditions that prevent ethical professional action. It’s through the work of Bennet (and many others) that inaction and not speaking up and speaking out is now seen as unethical and a form of moral injury.
If we can move on from this organisational tendency to prevent speaking up and acting on our findings about implicit bias of age, ethnicity, gender, class we’ll create a perspective and ethics that are proportional and health giving.
At the moment though, more of this debate is in books, in public speaking, is on the podcasts, than is yet applied at work, in the factory, commercial organisation, school, college, university.
Particularly, in the contracted out environment, the supply chains around everything we do need to be understood and re-humanised as a living thing: a revaluation of the human as someone who can make a wonderful contribution throughout the lifecycle.