Category Archives: health

Vaccination in perspective

To understand debates over vaccination, it’s valuable to look at the history and politics of vaccine development and policy-making.

Australian government health departments and leaders of the medical profession are united in supporting the standard programme of childhood vaccines. Vaccination rates in Australia are high and stable. However, a small number of citizen vaccination sceptics continue to raise concerns.

In the 1990s, Meryl Dorey set up what became the Australian Vaccination Network (AVN), around the same time as vaccine-critical groups were formed in several other countries. Then, in 2009, some citizen vaccination proponents set up Stop the Australian Vaccination Network (SAVN), dedicated to discrediting, silencing and destroying the AVN. There has been a ferocious struggle between SAVN and the AVN. SAVN’s campaign was instrumental in politicians bringing in measures to pressure parents to have their children vaccinated, even though some pro-vaccination researchers opposed the measures.

            SAVN is strident in its advocacy, with the mantra “Vaccination saves lives.” AVN members, and quite a few others, remain sceptical. They continue to question the effectiveness of vaccination, raise the alarm about adverse reactions, and suggest vaccination may be implicated in diseases such as autism.

Both sides adopt the mantle of science, claiming the evidence supports their viewpoints. SAVN denigrates vaccine sceptics as deluded or ignorant. Some vaccine critics say proponents are in the thrall of the pharmaceutical companies.

In this highly polarised debate, there is little room for anyone to take an intermediate position, for example saying that many vaccines are worthwhile but others are unnecessary. However, this might well be the view of some parents, though they are given little support to express their views. Any reluctance about vaccination can lead to the stigma of being called an “anti-vaxxer.”

Immunization: How Vaccines Became Controversial

Stuart Blume is emeritus professor of Science and Technology Studies at the University of Amsterdam. He has a lifetime of experience researching the politics of science and technology, and two decades ago began studying the vaccination issue. His approach can be called social history: a study of history taking into account social and political dynamics. Blume brings to the issue the perspectives of science and technology studies, seeing science and technology as subject to social processes.

            Blume decided to write a book summarising insights from his research. The result is Immunization: How Vaccines Became Controversial, recently published. I wrote one of the endorsements on the book jacket.

There is much here to ponder. The book does not mesh neatly with either the pro or anti positions in the usual public debate.

Blume tells two sorts of stories, one about vaccines and one about vaccination policy, and neither is a just-so story. Many traditional histories present science as a continual upward trajectory of discoveries and the overcoming of misguided beliefs. Blume, though, follows the path of historians of science who report on uncertainties, mistakes and unproductive paths. The implication is that present knowledge may be just as precarious, in its own way, as past knowledge.

Knowledge about vaccines and the immune system developed gradually, and for many decades there was no assumption that vaccination would prove to be a major route to public health. Smallpox was the initial target for vaccination, but there were many other killer diseases, such as diphtheria and tuberculosis, and other ways to address them besides vaccination. Today, with the focus on vaccination, it is sometimes forgotten that infectious disease can also be addressed through quarantine, sanitation, improved diet and general increases in the standard of living.

Vaccination campaigns are not always the best strategy to improve health. Blume highlights a problem with the polio eradication campaign. In a number of poor countries, resources for public health interventions were siphoned off to support polio eradication, which meant that impoverished people, needing basic medicines, were instead offered polio vaccinations, something less important for their own health.

A related tension permeated vaccination development beginning in the 1980s, when commercial considerations became paramount. Effort was put into developing vaccines for problems in affluent countries, where money could be made, while major illnesses in impoverished populations were left unaddressed.


Stuart Blume

            Blume notes that vaccination is often treated in isolation, as a special method of promoting public health, and not compared with other methods. To counter this tendency, he presents vaccination as a technology, in the broad sense of a set of techniques and artefacts, that can be compared to other public health technologies such as sanitation. He sees vaccination as a socio-technical issue, as having both scientific and policy dimensions, and as shaped by social, economic and political influences in both these dimensions.

Blume addresses vaccines separately, rather than as a group. As a result, he does not make a universal judgement about vaccination, as a good or bad thing. In these ways, Blume offers a different perspective than the one taken by most of the campaigners for or against vaccination.

One of the peculiarities of the vaccination debate is that nearly all the disagreement is about whether vaccination is beneficial or harmful, for example whether it has led to declines in infectious disease or whether there are significant numbers of adverse effects. Seldom are comparisons made with other ways of improving health, in particular children’s health, for example addressing poverty. Blume notes some of the disagreements about early vaccines.

As many infectious-disease killers were brought under control in western countries, while others such as HIV were proving too difficult, vaccine developers turned to other diseases, seeing opportunities for profits. Blume writes that the rise of neoliberalism led to significant shifts in the rationale for new vaccines. Whereas previously companies and scientists had freely shared information and vaccines in a common commitment to public health, from the 1980s onwards the pharmaceutical industry became more dominant and less public spirited.

Government health departments in different countries responded to industry pressure in different ways. It became more common to use cost-benefit analysis, especially given that many new vaccines were highly expensive. Health departments sometimes approved new vaccines without as much evidence as they might have required earlier.

            Cost-benefit analysis is not a good way to promote vaccines to the public. In several cases, notably measles and mumps, companies adopted a “rebranding” strategy to convince parents that diseases they had known as a routine and unthreatening part of childhood were actually killers to be feared and thus protected against using vaccines.

Blume believes that vaccines have saved millions of lives. Yet he is also sceptical of many of the latest vaccines, developed not as part of a public health agenda but by pharmaceutical companies whose primary aim is profit. Furthermore, there are dozens of new vaccines under development, many of them targeted at non-infectious diseases such as breast cancer.

Vaccination seems to have become a single-method solution for health problems, overshadowing primary health care that addresses the conditions that cause disease in the first place. Think how much easier it is to sell a vaccine than to address poverty and inequality, or illnesses due to industrial chemicals.

Vaccine hesitancy

For many readers, the most interesting part of Blume’s book will be the final chapter in which he addresses current anxieties about vaccination, especially in the west. He dismisses the idea, common among vaccination promoters, that the source of the anxieties is vaccine-critical groups such as the AVN. Sociologically, this explains neither the existence of the groups nor their alleged influence. It is like saying the reason people are concerned about economic inequality is because of protesters.

Blume cites research into the attitudes of parents that suggests something deeper is at play. Rather than dividing people into vaccine-acceptors and vaccine-refusers, Blume addresses a widespread vaccine hesitancy that affects many parents, especially well-educated ones, even when they adopt all the standard vaccinations.

Rather than vaccine-critical groups being the cause of vaccine hesitancy, it is better to understand them as a result of changed perceptions. Blume says vaccination has, for many people, become symbolic of a more general unease and sceptical attitude about the role of pharmaceutical companies and the medical profession. He notes that the usual survey research carried out by vaccination proponents can pick up demographic variations in parental concerns but does not get to their source.

It is perhaps relevant that citizens have no say in the development of vaccination recommendations, and even politicians are usually left out of the picture, as decisions are made by international organisations subject to corporate lobbying. This does not mesh well with people’s increasing knowledge about health matters. The experts might be right but nonetheless be distrusted.

Immunization: How Vaccines Became Controversial provides great insight precisely because it eschews the easy generalisations made by vaccination partisans. Vaccine development was not a straightforward linear process, and vaccination policy has been subject to a variety of influences. Vaccination is usefully seen as a technology, as just one of several approaches to promoting health, and thus judged in a wider context than a narrow calculation of benefits and risks. The contemporary vaccination debate is not just a matter of pro and anti, but should be seen in the wider context of attitudes towards social institutions and citizen participation in decision-making.

Blume does not offer easy answers, but more usefully points to the complexities and contradictions in the history and social dynamics of vaccination. It is essential reading for anyone who wants to get beyond the usual partisan positions in the vaccination debate.

Brian Martin
bmartin@uow.edu.au

Opiate addiction in a market economy

In the US, there has been a huge increase in deaths from heroin overdoses. Why?

In the past two decades, opiate use in the US has soared, and so have deaths from overdoses. The amazing story explaining why is told by journalist Sam Quinones in his 2015 book Dreamland: the true tale of America’s opiate epidemic. Quinones spent years interviewing users, parents of users, drug dealers, researchers, police and others. Dreamland is fascinating reading, telling the stories of individuals and communities caught up in the opiate epidemic.

There are two parallel stories involved, involving legal and illegal drug use. The legal side concerns painkillers. US doctors have long used morphine as a painkiller, but only as last resort because of the risk of addiction. Then came the “pain revolution,” during which opiates became acceptable and often prescribed in ever-increasing amounts.

The change in attitude was driven by commercial considerations. The company Purdue Pharma developed a time-release opiate pill, gained government approval for its sale and embarked on a massive marketing campaign to win over doctors. A key part of the sales pitch was that because there was no euphoria from an immediate hit, the drug was hardly ever addictive. To back this claim, Purdue representatives referred to an obscure publication.

Quinones found that doctors went along with these claims, with no one bothering to look at the publication. Its authors had forgotten about it and didn’t know it was being used to justify massive opiate prescribing. (Like Quinones, I’m not distinguishing between opiates and opioids.) As it turned out, the claims about there being little addictive capacity were wrong.

The marketing pitch was that if someone has pain, prescribe Vicodin or OxyContin, and if the pain continues, up the dose. Before long, huge swathes of the population were seeking prescriptions. Some unscrupulous doctors set up pill dispensaries, writing scripts for anyone who asked. Users would get their prescriptions filled at a low price subsidised by the government and sell portions to others to maintain their habit. At these dispensaries, lengthy queues would form of people waiting for their drugs.

The areas of the country most affected were those where the economy was in decline, so many residents faced bleak times. Quinones tells about small and mid-sized towns in Ohio and neighbouring states, subject to deindustrialisation and despondency about civic pride and public life. Addiction took hold, but it took a while before authorities realised the scale of the problem. One reason was that the parents of those most affected were ashamed to admit their son or daughter was an addict. They were white middle class.

The Mexican connection

In the small Mexican state of Nayarit, poppy seeds grow abundantly. Boiled down, they form a sticky substance called black tar. It is heroin. Some entrepreneurs from Nayarit came to the US and began building a heroin franchise operation. It was like nothing before.

Previously, most heroin imported to the US came from Asia, especially Afghanistan, brought in through New York and distributed by gangs. This heroin was often cut, namely adulterated, as it moved down through the distribution chain. Many small-time dealers were themselves addicts; dealing is a way of making money to support a habit. The heroin business is highly profitable, leading to violence between operators and drawing the attention of the police. It is devastating to poor inner-city areas, especially black neighbourhoods.

The Nayarit entrepreneurs developed a different model. They brought in poor young men from Xalisco, a small city in Nayarit, who were willing to work at low pay in the US because the alternative was backbreaking work on sugar fields at even lower pay. These young men were paid a wage, so they had no incentive to adulterate the heroin they delivered. Furthermore, they were not users themselves. They lived in barren apartments and were given old cars to make deliveries. After a few months they were sent back to Mexico.

            The Nayarit entrepreneurs had several rules. They did not use violence and did not carry guns. They sold only to whites, as this was considered far safer. And they marketed only in areas where the previously established heroin operations were absent, such as Portsmouth, Ohio.

The Nayarit operators used a pizza-delivery model. They prepared black tar in carefully measured amounts tied up in balloons. They would hand out a mobile phone number to prospective users. When they received an order, a courier (one of the boys from Xalisco) would drive to the location with balloons of black tar in his mouth and spit out the appropriate number, for example two balloons for $40. It was high quality heroin provided promptly and reliably. For white addicts, this was enticing. There was no need to go to a seedy neighbourhood and negotiate with addict sellers.

            The operators would check in with their clients to ensure service was satisfactory, calling to ask whether the courier was on time and provided the goods. If a client didn’t call for a few days, the operators might ring and ask if there was a problem. They would lower prices to build their clientele, and sometimes give out free samples to win favour.

            If police pulled over a courier, he would swallow the balloons. Initially, police sent couriers back to Mexico. They were replaced within days. Later, some courts sent couriers to jail with long sentences. They were replaced too, with little interruption to business. Xalisco seemingly had a bottomless reservoir of poor young men willing to take chances to make money. Their reward was to impress their friends and families back home by taking them to expensive restaurants and building nice houses.

The Nayarit heroin operation happened to expand at just the time that opiate addiction was dramatically expanding due to sales of painkillers. For example, a high school football player might be injured and given OxyContin for the pain, developing an opiate habit. To maintain the habit, it was easy to switch to black tar, provided so conveniently.

The first major signal of this emerging opiate problem was deaths due to overdoses. A few individuals, in different parts of the US, started expressing concerns, but it was difficult to gain attention due to the pain revolution and the low profile of the black tar distribution operation. It was striking that the death were not blacks in big cities but whites in small towns. In many cases, parents did not know their children were addicted until they overdosed and died. The parents included politicians, doctors and judges. So why didn’t they speak out? The reason, according to Quinones, was shame. In white suburbs, heroin addiction was stigmatised as something happening somewhere else, to a different class of people. Many parents made up false stories about how their children had died. So it took a while before a few courageous parents started speaking out, raising the alarm.

Drugs and profit

In the US, there has been a so-called war on drugs since the 1930s, when federal authorities began a scare campaign about marijuana, whose use then was concentrated in immigrant communities. Illegal drugs were demonised. Meanwhile, legal recreational drugs, notably tobacco and alcohol, were massively advertised. Then came pharmaceutical drugs, also massively advertised.

            Drug issues are difficult to summarise briefly, especially because government pronouncements, media reports and advertising have cemented in certain attitudes. A simple contrast is between a policy of harm minimisation and one of regulated markets.

Markets are never “free,” but are shaped by government regulations, cultural expectations and social values. In the US, regulations enabled the profit motive to foster addiction and destroy communities.

The company selling legal opiates, Purdue Pharma, ended up making billions of dollars per year on the back of a massive marketing operation based on the claim that time-release opiate painkillers were hardly ever addictive. Profits drove the rapid expansion of use.

Making addictive drugs illegal is a different way to regulate a market. The trouble is that when the demand is inflexible, and alternatives are less enticing, this creates a strong incentive for organised crime. The result, often, is distribution via gangs, reliance on violence and corruption of the police and other authorities.

What is fascinating about the Xalisco distribution network is that it offers a different model for success in selling illegal goods: agents paid a salary rather than a commission, provision of high-quality service and goods, and avoidance of violence.

The US model for dealing with drugs has been disastrous for the people there and in the rest of the world. Tobacco is the world’s most damaging drug, and it was entrusted to large corporations with a huge incentive to expand sales. Alcohol is another damaging drug, again promoted heavily. Then there are pharmaceutical drugs, including morphine. Meanwhile, making some drugs illegal created different sorts of markets. The US war on drugs has contributed to corruption and the world’s highest imprisonment rate.

Quinones does not engage with arguments or efforts for law reform or a different way of managing drugs, instead simply telling the story of the different players in the US morphine/heroin saga. A compelling treatment of the US war on drugs is Johann Hari’s book Chasing the Scream.

In the US, there seems no end in sight for the toxic relationship with drugs. If ever there was a case for moving away from profit as a driving force, this is it.

There has been one good result. Overdose deaths in white middle-class areas have changed the attitudes of some politically conservative communities and politicians, creating more understanding and sympathy for opiate addicts. Perhaps there is some hope for change.


Sam Quinones

PS In recent months there has been some media coverage of opiate addiction problems in Australia.

Brian Martin
bmartin@uow.edu.au

When activists attack scientific dissent

Doing research on some topics can get you in trouble.


Alice Dreger

Alice Dreger was the ideal person to become an activist on issues of intersex and transgender. She was white and straight and hence could be a firm ally without being accused of self-interest or personal animus. She was an historian of science and able to research the issues as well as speak out about them. And she was articulate.

In the US in the past two decades, intersex and transgender have become hot topics. Dreger became involved, almost by accident, through a suggested PhD topic: the history of biomedicine and what, a century ago, was called hermaphroditism.

Intersex refers to people whose bodies do not conform to the conventional ideas of normal female or male. For example, some individuals have versions of both a penis and vagina. Others have an extra large clitoris. There are many variations. Dreger found that in many cases such individuals were brought up as one gender or the other and most people didn’t know the difference. But in some cases, doctors decided that babies with ambiguous genitalia needed to be “fixed” by surgery, for example their clitorises reduced in size. This sometimes caused physical damage and led to emotional problems.

From a human rights perspective, it can be argued that surgery for intersex should only be undertaken when a person can give informed consent. Even the assignment to one gender or another at birth needs to be undertaken with care.

After researching the history of medicine and intersex, Dreger obtained visibility on the issue, was contacted by activists and was drawn into campaigning for intersex rights. She voluntarily relinquished her tenured academic job to become an activist, and for a decade she used all her skills on behalf of those who were being harmed by the imposition of a medical-sexual orthodoxy on people’s bodies.

Scientific research and gender politics

By another set of accidents, Dreger entered an even more contentious domain: defending scientists who challenged conventional ideas about sexual identity. Michael Bailey argued that transgender is shaped by both biology and culture. He distinguished between two types of male-to-female transsexuals: “transkids” (Dreger’s preferred term) who are males attracted to other males, and “amour de soi en femme,” males who dream of being females. Only some change their bodily sex, depending on cultural conditions. Bailey drew on previous work by Ray Blanchard.


Michael Bailey

As well as publishing papers in scholarly journals, Bailey wrote a book, The man who would be queen, which received some publicity and also generated hostility from a few transgender campaigners who were offended by being characterised as “amour de soi en femme.” The hostility went beyond expressing disagreement. Bailey was targeted as a scholar and a person, for example with complaints made to his university about ethics violations.

Some people who knew Dreger urged her to look into the Bailey story. She did, using her skills as a researcher. She concluded that Bailey’s research work was solid. She also arranged to meet Bailey, to judge for herself claims that he was anti-gay and anti-trans. To her surprise, she discovered that he was totally comfortable with gay and trans people, and highly sympathetic to them.

Dreger wrote a long analysis of the Bailey saga and arranged for it to be published in an academic journal. It amounted to a defence of Bailey against his attackers.

“After nearly a year of research, I could come to only one conclusion: The whole thing was a sham. Bailey’s sworn enemies had used every clever trick in the book — juxtaposing events in misleading ways, ignoring contrary evidence, working the rhetoric, and using anonymity whenever convenient, to make it look as though virtually every trans woman represented in Bailey’s book had felt abused by him and had filed a charge.” (p. 100)

As a result, Dreger herself became a target. This experience set Dreger on a course of action: defending scholars who unfairly came under attack.

She tells of her experiences in an engaging book titled Galileo’s middle finger: heretics, activists, and the search for justice in science. It is a candid account of her personal trajectory, with extended treatments of several case studies, of which Bailey’s is one.

Dreger addresses the damaging potential of political correctness in sexuality studies and anthropology. Political correctness here refers to adherence to a particular viewpoint that is linked to fair treatment of disadvantaged groups, for example sexual minorities and indigenous groups. A classic example is the study of race and IQ. The politically correct view is that there are no systematic differences in innate intelligence between different ethnic groups, with measured IQ variations due to cultural factors. Anyone who studies race and IQ enters a treacherous terrain in which the “wrong” findings can lead to being attacked. Most researchers steer clear of such topics.

Dreger is critical of subordinating scientific research to belief systems. She believes that doing good research is vital, and those who do good research should be defended against ideologues. Furthermore, she made it a personal duty to become a defender in a number of cases.

The mirror side of this position is a concern about bad research used to bolster harmful practices. Dreger became alarmed about the use of a steroid during pregnancy that was supposed to reduce the risk that a child would be intersex. This drug was being dispensed by a senior scientist, Maria New, to numerous mothers. Dreger began investigating and concluded that the research justifying this intervention was thin and that mothers were not being properly warned that the drug was experimental.

In this case, Dreger became involved to promote good science by trying to expose what she believed was bad science. She thought the solution was to get government regulatory bodies – one of them was the Food and Drug Administration (FDA) – to examine the evidence, but to her dismay the FDA’s assessment was that all was okay. Dreger learned that regulators can sometimes give the stamp of approval to bad practice.

Suppression of dissent

Since the late 1970s, I have been researching what I call “suppression of dissent.” In a typical case, a scientist does research or speaks out on an issue and challenges the interests of a powerful group, and as a result comes under attack. In some fields, including forestry, nuclear power, pesticides, fluoridation and vaccination, there is a pattern of suppression, with numerous scientists, engineers, doctors, dentists and others being penalised for expressing their views.

In some of these areas, there are key works describing numerous cases of suppression of dissent. George Waldbott, a US doctor critical of fluoridation, documented many cases of suppression of fluoridation critics in his 1965 book A struggle with titans. Robert van den Bosch, a US scientist, recounted case after case of reprisals against scientists who questioned the orthodoxy on pesticides in his 1978 book The pesticide conspiracy. David L. Lewis, yet another US scientist, tells of numerous suppression cases in his 2014 book Science for sale. To this list must now be added Dreger’s book Galileo’s middle finger.

(Suppression doesn’t only occur in the US! The 1986 edited book Intellectual suppression reports on numerous Australian cases and gives references to cases in other countries.)

There are many similarities between Dreger’s approach to suppression of dissent and my own experience. Both of us address challenges to scientific orthodoxy, often linked to influential groups, and attacks against dissidents. Each of us, in addition, became involved in a critique of establishment figures. In my case this involved analysis of the pro-nuclear positions of Sir Ernest Titterton and Sir Philip Baxter.

There are also some differences between our experiences and approaches. Most obviously, Dreger has addressed identity issues and taboo topics and encountered hostility from a particular group of activists. This is a different sort of configuration than the patterns I’ve mainly looked at, which involve vested interests of industry or government groups.

Another difference is that Dreger investigates research and researchers in considerable depth in order to determine who is right, scientifically. If, by her assessment, a scientist is doing good research, indeed better research than others, then it is unfair for the scientist to come under attack. This is a sound approach.

My usual approach is somewhat different. I do not seek to determine who is right, scientifically, for example whether a researcher’s findings on pesticides or vaccination are superior to others. My concern is that researchers should not be penalised just because their findings challenge orthodoxy or threaten vested interests. For this, the double standard test is useful. If two scientists do research on pesticides or vaccination, and one reaches conclusions supporting the orthodox view and one reaches conclusions challenging it, are they treated the same way? If the dissent-supporting scientist suffers reprisals but the orthodoxy-supporting scientist does not, this suggests suppression of dissent.

Galileo’s middle finger is an important book. Dreger learned from her journey:

“how badly most people want simple stories of male and female, nature and nurture, good and evil; how the Internet has gutted the Fourth Estate; how the government is made up of fallible and occasionally disappointing humans; and why, more than ever before, democracies must aggressively protect good research.” (p. 189)

Dreger has forged a vital path in a highly contentious area, and told of her experiences in a revealing and perceptive way. Anyone interested in science in a free society should pay heed.

Brian Martin
bmartin@uow.edu.au

Thanks to Anneleis Humphries, Michael Matteson, Ben Morris and Tracey Woolrych for helpful comments.

Stress: how it can be good for you

By changing the way you think, you can deal with stress more effectively and use it to serve your goals.

A friend complains about being stressed: there’s a deadline at work, one of the kids is sick, the car broke down and she had a nasty argument with a neighbour. Stressful indeed. So the usual goal is to reduce stress, to avoid it. This seems like common sense.

However, when it comes to physical activity, the idea of reducing stress has long been discredited. Exercise is good for you, as long as it’s not too much. For athletes, training is designed to provide the amount of stress on muscles to build them up without causing injury.

Lack of physical stress is disastrous for the body. Lying in bed for day after day is a health hazard, with muscle wastage and other adverse consequences.

If the body needs optimal stress for best performance, what about the mind? Are there actually advantages to stress? The answer to these questions, according to Kelly McGonigal, is an emphatic yes, as indicated by the title of her book The upside of stress: why stress is good for you (and how to get good at it).

McGonigal spent many years recommending the usual advice to reduce stress. Then she was stimulated to rethink her position and started looking into research on the benefits of stress.

McGonigal writes in an engaging fashion. She draws on her personal experience and tells about research findings in an accessible way, often providing stories about the researchers or about people who have been changed by adopting a different approach to stress.

Think differently

Here’s the most amazing finding. If you think that stress is good for you, it will actually become better for you.

McGonigal cites research by Alia Crum. In one of Crum’s studies, one group of hotel housekeepers was told that the physical work they did on the job was a form of exercise and good for them; the other group was told only that physical exercise was good for health. Then after a period of four weeks, each group’s physiological parameters were measured. The group that thought of work as exercise did better, including losing weight and body fat and reducing blood pressure. Simply thinking about their work differently changed its effect on their bodies.

Another typical experiment goes like this. Two groups of subjects are prepared for a stressful experience, for example giving a talk in front of a large audience. One group is given the usual advice that stress is not good for you and that they should to try to relax. The other group is told that stress is a useful tool. The group thinking positively about stress performs better according to independent judges.

Then there are physiological tests. One group, put into a stressful situation, is told in advance that they’ll feel nervous and should try to relax. The other group is told they’ll feel excited. The group that interprets stress as excitement actually has lower levels of biomarkers for harmful products.

The implication is that fearing and avoiding stress causes harm, whereas accepting and embracing stress can reduce its negative impacts and enable better performance.

Mindsets

These results reflect an important process: the influence of thinking on behaviour, in particular the role of a mindset, which is a framework for understanding the world, or oneself. Carol Dweck in her book Mindset described two ways of thinking about intelligence and performance. One is the fixed mindset, in which an individual sees performance as reflecting an innate capacity. The other is the growth mindset, in which performance is seen as reflecting effort. The growth mindset is far better for long-term improvement. People with a fixed mindset avoid challenges where they might fail, because failure might shake their belief about themselves, whereas people with a growth mindset see failure as indicating they need to work harder.

Mindsets about stress are similarly important. The key thing is that they affect behaviour in systematic ways. Believing stress is bad leads to efforts at distraction, getting rid of feelings (rather than addressing their source), drug use and withdrawal. In contrast, when people believe stress is beneficial, they accept the existence of stressful events, strategise, seek information and advice, address the source of stress and make the best of the situation.

Stress responses

McGonigal traces negative attitudes to stress to Hans Selye’s classic studies of the effects of stress on rats. They were highly traumatised, and these findings were interpreted by doctors and the public as indicating that stress should be avoided. This was not Selye’s intention, because there were important differences between the experiences of his rats and those of most people. Selye’s rats were exposed to electric shocks in a situation in which the shocks were unpredictable, unavoidable and meaningless. In contrast, the stresses that most people experience in their daily lives are fairly predictable, sometimes avoidable and often quite meaningful.

“Even in circumstances of great suffering, human beings have a natural capacity to find hope, exert choice, and make meaning. This is why in our own lives, the most common effects of stress include strength, growth, and resilience.” (p. 45)

One of the ways to benefit from stress is to recognise that it provides the resources to deal with situations. Stress commonly causes your heart rate to increase, your body to sweat and your attention to become focused. The trick is to realise that these responses are helpful for dealing with challenges: your attention is focused on the issue at hand, your senses are heightened, your energy is mobilised. So rather than trying to dampen the stress response by avoidance, it can be used to take action.

A second dimension of the stress response relates to interactions with others. To benefit from stress, the key is to get beyond the fight-or-flight options and instead adopt a “tend and befriend” response. This means to interact with others, to help others, to be sensitive to others’ emotions, and to defend them.

There is a third dimension to the stress response: it can help you learn and grow. The way your body responds to stress can help integrate experiences.

The first half of McGonigal’s book is about understanding stress, covering these three dimensions. The second half is about transforming stress, addressing the same three dimensions, describing ways to learn how to change stress from a negative to a positive. This involves exercises to use anxiety (a stress response) for achieving goals, to respond to stress by caring for others and thus build resilience, and to become stronger as a result of stress.

This last dimension can seem unfair. If you’re subject to traumatic experiences, why should the onus be on you to use this as a way of becoming stronger? McGonigal repeatedly emphasises that trauma is bad news: it has many downsides and should be avoided. But trauma is an inevitable part of most people’s lives, and it is worth knowing that it is possible to gain something from it. This is a matter of recognising the hardship involved but also trying to gain something from the experience.

Making attacks backfire

Over the past twenty years, I’ve heard from hundreds of individuals who are concerned about being sued for defamation. Some are worried that something they have said would open them to legal action. Others have received letters from lawyers demanding an apology and a payment for damages. A few have received a writ and are facing expensive court proceedings.

Many of them are frightened, even terrified. They are afraid they might be sued and end up losing their house. To say they are stressed is to put it mildly. They often don’t know what to do and, while looking for information, have stumbled across my website.

McGonigal’s approach to stress offers a different way of thinking about legal threats. Rather than fearing them, they sometimes can actually be welcomed because of the opportunity to try to make them counterproductive for the perpetrators. Truda Gray and I have written about how to use publicity and other means to make defamation threats and actions backfire.

In some cases, there is no easy option, but nonetheless there are options and they need to be carefully considered. The stress of being attacked can be used as a resource to generate courage, seek support and think strategically. Rather than cowering in fear, a better attitude is to think “Come and get me (and beware – you may regret it).”

More on mindsets

In some ways, McGonigal’s biggest challenge is people’s deep-seated beliefs that stress is bad. She is fighting an uphill battle, and experimental findings and stories will only go so far. What is really required is a change of mindset, to rethink stress and how to respond to it.


Kelly McGonigal

McGonigal reports quite a few studies of “mindset interventions.” These are typically group sessions lasting 30 minutes to a few hours designed to change the way people think about themselves and the world. Done well, a mindset intervention can lead to lasting changes in behaviour, for example improved academic performance.

This can be hard to believe. Teachers spend hundreds of hours with students trying to help them learn, and can react with scepticism to someone who says a short session can make a lasting difference. There’s another confounding factor: people whose mindsets are transformed don’t even remember the intervention. They think of things differently and do better because that is their new reality. No extra effort is needed.

If you want to change the way you react to stress, you can create your own personal mindset intervention. Get The Upside of Stress and read some of it. Then write down a brief account of how you could react to stress more positively. Then tell someone else about what you’ve read and how they could change their own reactions. That’s it. It’s not much, and can have lasting benefits.

Brian Martin
bmartin@uow.edu.au

Thanks to Dalilah Reuben-Shemia for useful comments.

Older body, youthful mind

For those who are getting old, there are ways to keep youthful mentally.

Senior lady concentrated

Is mental decline in old age inevitable? Are there habits that can help in maintaining mental acuity in later years? The older I get, the more these questions interest me, and so I keep on the lookout for discussions of relevant research that can be put to practical use. I’ve just read Staying Sharp, one of the most useful contributions in this area.

Academics and the life of the mind

I work as a researcher, among academics who depend on their minds to do their work. Most of my colleagues are over 40. Yet, despite mental capacity being crucial to scholarly performance, relatively few pay a lot of attention to nourishing their brain – “nourishing” interpreted in a variety of senses.

Whatever their views about the mind, many scholars behave as if it doesn’t matter all that much how they treat their bodies, because the mind is this separate entity that can be cultivated autonomously. Some damage their brains through excessive alcohol. More common is a neglect of physical exercise, even though there is ample evidence that exercise benefits mental functioning in multiple ways, including reducing anxiety and depression. Poor diet is also common.

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The behaviour of intellectuals who neglect their bodies might be related to a status difference between white and blue-collar workers. To distinguish themselves from manual labourers, intellectuals may avoid physical exertion. Or perhaps the status comes from having sufficient income to afford a nice car and drive to work rather than walking or cycling.

Staying sharp

The book Staying Sharp is written by two US health practitioners who seek to combine ideas from scientific research with holistic approaches. Henry Emmons is a psychiatrist with a background in conventional medicine who now includes natural therapies in his practice; David Alter is a psychologist with a PhD who practises in a centre for holistic health. Their book is subtitled 9 keys for a youthful brain through modern science and ageless wisdom. Their focus is on older people, who they euphemistically refer to as being in the “second half of life,” roughly the 40s and beyond.

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After a few introductory chapters, Staying Sharp has 9 chapters addressing each of the 9 keys in the subtitle. The authors have categorised the vast body of relevant research and practice into a convenient package for the non-specialist reader.

Of the 9 keys, three are more overtly about the body: exercise, sleep and diet. If the brain is thought of as a biological organ, then it makes sense that exercise is beneficial: it stimulates the flow of blood throughout the body, including the brain, providing nourishment and removing waste products. A good diet ensures the nourishment is of the highest quality. Sleep allows the brain to recover from inputs during wakefulness, while also performing functions such as consolidating memories.

Emmons and Alter’s other six keys are about mental orientations: curiosity, flexibility, optimism, empathy, relationships and authenticity. It seems plausible that greater curiosity can aid the mind, because it involves becoming exposed to new ideas, developing new connections and brain cells. Many people remain stuck in the same sets of ideas for years or decades, and this can lead to stagnation. I perceive this in myself in my daily writing. When I’m writing about a topic I’ve written about before, the words flow easily, but if I tackle a new topic, it becomes more of a struggle, which might be a sign of greater effort that mobilises less frequently used brain circuits. It is more comfortable to stick with familiar topics. Tackling new topics, as a result of curiosity, is analogous to exercise that pushes the body a bit beyond its comfort zone.

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Emmons and Alter go well beyond this sort of intuitive assessment. They cite all sorts of scientific studies about curiosity, provide an evolutionary rationale for the advantages of curiosity (but not too much of it), give the case for experiencing boredom (to a certain degree), and provide all sorts of suggestions for fostering curiosity.

For each of the chapters on the 9 keys, Emmons and Alter provide a summary of key concepts, a rationale for the activity, evidence of effectiveness, and practical guidance for engaging in the activity. For example, concerning sleep they report on the prevalence of sleep deprivation in the US, tell about changes in sleep patterns as people get older, describe at some length the benefits of sleep (improved mood, clearing of the mind, repairing the body), give the biological rationale for the importance of sleep (including detoxification), and then pages of details about how to develop habits that promote good sleep.

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Henry Emmons

Of writing for the general reader on the mental side of ageing well, Staying Sharp is the most comprehensive treatment I’ve seen. It draws on a wide range of scientific literature and covers both physical and psychological dimensions. The authors provide detailed practical steps in each area they address.

Out of the vast body of research and writing about the mind and ageing, to highlight 9 areas is a matter of convenience. In practice, all sorts of practices make a difference, but trying to make sense of all the information available is overwhelming. Readers who have been following research in areas covered in Staying Sharp will have their own ideas about priorities. This is only to be expected, because no prescription for productive ageing is ideal for every individual.

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David Alter

Reservations

Staying Sharp is oriented to affluent people and to life in the US. For those living in poverty or in a different culture, some of the keys would be different. To stay sharp, sometimes the first priority is to stay alive.

The book is written for individuals, even though some of the recommendations are about building connections with others. Individualism is higher in the US than anywhere else, and is probably greater among those who are well off. As a result, Staying Sharp has little about collective solutions for ageing well. For example, towns can be designed so that exercise by walking and cycling is part of daily life, and workplaces can be designed to foster greater optimism and stronger relationships. These involve social change, will be resisted by groups with vested interests, and are unlikely to make a big difference in the short term.

It’s possible to imagine a future in which the insights from Staying Sharp, and the experiences and studies on which it is based, are used to build communities that encourage mind-strengthening throughout life. Until then, a possible substitute is to devote efforts towards moving towards such a future. The efforts will help others and, by following Emmons and Alter’s advice, can contribute to staying sharp throughout one’s own life.

Read the book and visit the Staying Sharp website, https://stayingsharp.aarp.org

exercisebrain780

Brian Martin
bmartin@uow.edu.au

Thanks to Paula Arvela, Anu Bissoonauth-Bedford and Jody Watts for helpful comments.

Preventing catastrophe

Floods, fires, hurricanes, earthquakes, tsunamis: can the worst consequences be prevented?

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Wollongong, 1998. Photo: John Larkin

On 17 August 1998, there was sudden downpour in Wollongong, with over 300mm of rain in a few hours. There was flash flooding; coal wash from a colliery swept through suburbs.

Some homeowners were insured; others were not. There was uproar over whether the damage was caused by storm or flood, because some companies covered only storm damage. After being shamed in the local media, some companies paid up – but not all.

The controversy over insurance coverage overshadowed a bigger issue. Should something be done to prevent damage and loss of life from such heavy rain? Wollongong is built on the edge of the ocean, in a narrow strip next to a steep rise called the Illawarra escarpment, and rain runs in torrents down the incline to the sea.

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View of Wollongong from the Illawarra escarpment

When houses are built at higher elevations, displacing the tree cover, there is more runoff to the areas below, creating a greater risk of inundation. Perhaps the local government should impose stricter controls over development, or homeowners at higher elevations should pay a premium land tax to compensate for contributing to increased risk of damage to other properties.

The bigger picture

The Wollongong storm story is a small example of a much bigger problem: what should be done about so-called natural disasters? In 2011, a huge earthquake off the coast of Japan created a tsunami that killed over 15,000 people and damaged nuclear power plants. Japan sits on or near a major fault line for earthquakes.

If you want to learn more about the history of fires, floods, earthquakes and tsunamis, then check out the engaging book The Cure for Catastrophe: How We Can Stop Manufacturing Natural Disasters. The author, Robert Muir-Wood, has decades of experience in investigating disasters, often visiting sites immediately afterwards, observing destruction of buildings and noticing which construction types survived, assessing responsibility for the human deaths and casualties and seeing what reduce the impact of natural forces.

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R
obert Muir-Wood

Much of the book is historical, telling about many of the most prominent disasters, such as the 1755 Lisbon earthquake. In earlier centuries, before the theory of plate tectonics, Aristotle was the authority, and he believed earthquakes were due to great underground hollows that opened and swallowed up buildings and people. In popular understandings, in Europe at least, disasters were seen as divine retribution. However, the Lisbon earthquake did not fit the pattern, as the city was one of the most religious at the time.

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An artist’s portrayal of the Lisbon earthquake

Gradually, more empirical approaches gained support. However, the scientific study of disasters faced several obstacles. One was vested interests. After the 1906 San Francisco earthquake and fire, local merchants excised mention of earthquake and opposed funding studies of earthquake hazards, because acknowledging the risk might discourage commercial development. The disaster was named a fire and regulations were set up so buildings could withstand fire, but they remained susceptible to collapse due to fierce shaking.

Unnatural disasters

Muir-Wood says that natural disasters are not purely “natural” but always involve a social dimension. Indeed, most of the damage from disasters, physical and human, is due to human choices. Today, there is sufficient knowledge to know what to do to minimise death and damage, but often insufficient political and social will.

Fewer people died in building collapses in the Magnitude 8.8 central Chile earthquake than in the 1,000 times smaller 2009 L’Aquila earthquake in central Italy. After fifty years of investment in world-class schools of engineering, and by strictly enforcing tough building codes, Chile today has some of the safest earthquake-resistant building stock in the world. (p. 172)

In some locations, disasters are frequent enough that people should stay away. It makes no sense to rebuild in a floodplain unless there are ways to prevent flooding. But after a few decades, people forget the previous disaster and profit-seeking developers carry the day.

The Netherlands offers the best example of effective disaster prevention. With much of the land below sea level, the country relies on dykes to prevent inundation. In case the dykes are breached, there are plans for secondary defence of life and property. What is especially significant in the Netherlands is that the potential for disaster had a profound effect on the political system, with all involved in a cooperative effort to protect the country. The potential for disaster in this case generated a special form of political cooperation.

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Flood control in the Netherlands

Muir-Wood describes the rise of insurance systems. Initially, competition between insurance companies was ruinous: some would gain business by offering low premiums and then go bankrupt when a disaster required large payouts. Gradually, insurance companies adopted scientific approaches, calculating premiums in a realistic way. They also led to the emergence of reinsurance, insurance for insurance companies. Reinsurers have a special interest in disaster planning, and can apply pressure to adopt policies that reduce damage in a disaster.

Muir-Wood says that, ultimately, affluence is a cure for catastrophe, because people are willing to pay to reduce risks. Just as important, though, is corruption prevention. In many countries, there are laws governing housing construction to reduce the risk of collapse in an earthquake, but the laws are routinely ignored: bribery enables dangerous construction to continue. In such circumstances, campaigns against corruption have the potential to save many lives.

Construction codes and suitable technologies can greatly reduce vulnerability to disasters. So can warning systems. Yet another vital step is to stop contributing to the likelihood of disasters. The most significant item here is global warming, which is increasing the sea level and the likelihood of damaging storms. There are sophisticated models to calculate the contribution of climate change to natural disasters. Disaster mitigation includes campaigning to reduce the emission of greenhouse gases.

When insurance companies refuse to cover certain hazards, this can have an impact, for example reducing the value of houses in areas subject to flooding. Whether insurance is available, and how much it costs, thus can be a signal about the need for disaster planning.

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The 2010 Haiti earthquake: more than 200,000 people died

Unnatural disasters, take two

Muir-Wood does not address disasters primarily created by technology. A good example is nuclear power. There is no private insurance available for nuclear reactor accidents. In the 1950s, the US government passed the Price-Anderson Act exempting electricity utilities from full and immediate liability for reactor accidents. This served as a financial prop for the nuclear industry: prices would have increased if commercially calculated rates had to be paid to cover the exceedingly rare but exceedingly expensive costs of a major nuclear accident. Some analysts have recommended that nuclear power plants be built underground to reduce the damage from a meltdown accident. This has not been done, indicating that governments are subsidising nuclear power, with people and the environment occasionally paying the price, as at Chernobyl and Fukushima.

Across the world, there is another catastrophe that is unnatural, yet all too familiar: war. Many of the world’s top scientists and engineers toil away to produce deadly weapons, and arms factories pump out everything from small arms to missiles. Although popular concern about nuclear war faded after the 1980s and the end of the cold war, there remain over 10,000 nuclear weapons with the potential to kill hundreds of millions of people. The cure for catastrophe in this case is not more weapons or more treaties, but rather disarmament. The most important tool against war is peace activism, but it receives little funding compared to the war system.

One of the important messages from The Cure for Catastrophe is that most of the consequences of natural disasters are not “natural” but rather depend on human choices, for example about where and how to build housing. The same applies to unnatural hazards of nuclear, chemical, biological and other creations. It is an interesting thought experiment to apply the principles of disaster planning and insurance to the risk of war.

cure-for-catastrophe

Bad outcomes were determined, researchers were discovering, not so much by the earthquake or hurricane itself as by the nature of the society affected – its inequalities, poverty, education, and preparedness. Disasters were “manifestations of unresolved development problems,” and the flood or cyclone was a trigger. The problem of disasters would not be solved by focusing on the hazards alone. (p. 212)

Brian Martin
bmartin@uow.edu.au

The rise and decline of Illawarra Citizen Advocacy

Illawarra Citizen Advocacy was a world leader in recruiting and supporting citizens to advocate on behalf of people with intellectual disabilities. The decline of the programme provides some cautionary lessons.

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Ken and Joanne, Illawarra Citizen Advocacy

Imagine someone arranges a meeting with you and says, “There’s a young man named Fred who lives in your neighbourhood. He has a serious intellectual disability and he is vulnerable to abuse. He needs someone who will ensure that he is safe — someone who will protect him as much as a relative or close friend. And he needs this person to stand by him for the indefinite future, maybe the rest of his life. I think you’re ideal to fill this role. Would you agree to be this person — to be Fred’s advocate?”

This is a very big request. It’s a huge request. Who would possibly agree?

I learned the answer to this question in 1996. The coordinators of Illawarra Citizen Advocacy, Julie Clarke and Joanne North, talked to me about their work and then asked whether I would be an advocate. For my own reasons, I declined. But I did agree to join the board of the programme, and then a year later became chair of the board for the next decade.

In the 1980s, in the Illawarra — the region including the city of Wollongong — a number of parents and others supporting people with intellectual disabilities had a dream. They shared stories, held meetings and lobbied to obtain funding for a programme practising citizen advocacy.

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Jo and Kirsten, Illawarra Citizen Advocacy

Advocacy

To understand citizen advocacy, it’s first useful to describe advocacy, which can come in various types. A lawyer is an advocate for clients and environmentalists are advocates for nature. People with skills and connections can advocate on their own behalf, called self-advocacy. For example, people who cannot see can speak, write and campaign for better services and facilities to cater for the sight-impaired.

However, some people have little or no capacity to advocate, and this includes many with intellectual disabilities, sometimes combined with physical, mental health or other disabilities. The advocacy of concern here is on behalf of people with disabilities who have significant unmet needs. They might be neglected, at risk of abuse, friendless, homeless or not being given opportunities.

Several of the Illawarra residents who met in the 1980s were parents of children with intellectual disabilities. These parents were worried what would happen to their children after they, the parents, died or became incapacitated. Other parents needed help to be able to cope with the needs of their children.

One type of advocacy is called systems advocacy. This involves paid advocates — who might better be called organisers — helping to change systems that prevent full development. Education systems or transport systems may need different policies or technologies or understandings so they can cater for people with disabilities. Systems advocates often work with others to foster change, for example working with parents to open up education systems to serve their children. Systems advocacy has a multiplier effect, because a change in a system today benefits some individuals immediately and many more later on.

Another type of advocacy is called individual advocacy. A paid staff member advocates on behalf of various individuals, taking on clients one after the other, sometimes just for a single item of need, sometimes for repeated expression of voice for the same person.

Then there is citizen advocacy. The paid staff members, called coordinators, do not do advocacy themselves. Instead, they search for people with disabilities with significant unmet needs who might benefit from advocacy. When someone suitable is found, this person is recruited into the programme and called a protégé. Then the coordinator searches for a member of the community — an ordinary citizen like you or me — who would be willing to be an advocate for this protégé, usually for the indefinite future. It is an extraordinary thing to ask. I said no myself, but as a member of the board of Illawarra Citizen Advocacy, I discovered there are many who say yes.

Citizen advocacy relies on people — the advocates — who have no special training. The advocates can obtain advice and encouragement from the coordinator, but need to do the advocacy themselves. What they lack in training they make up for in learning about their protégé. Over the course of weeks and months, the advocate learns about the protégé’s life and needs and discovers what can be done to protect and enhance the protégé. In a sense, a citizen advocate is like a family member, developing the same sorts of insight and commitment that parents, siblings or children can develop about others in their families.

Sometimes the most important contribution of a citizen advocate is simply to be there. Some protégés are so isolated that there is no single person who stays in their life. Various service workers — some of them highly caring and skilled — may help the protégé, but often the workers come and go, not maintaining an ongoing relationship. The advocate comes into the protégé’s life and is there because they want to be there, not because of being paid to be there.

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Peter and Rae, Citizen Advocacy South Australia, http://www.citizenadvocacysa.com.au/success_stories/peter-and-rae

Activities in Illawarra Citizen Advocacy

I attended monthly board meetings of Illawarra Citizen Advocacy. At each meeting Julie, the coordinator, told about what she and Joanne had been doing.

One key activity was recruiting protégés according to an agreed recruitment plan for the year. Julie and Joanne searched for people with intellectual disabilities, visiting schools, homeless shelters, homes for the aged and a range of other places and networks, looking especially for people in need who might not be known to or well served by welfare or other agencies. The stories of their searches, and of the individuals they recruited, showed the importance to seeking to find those who are most disadvantaged and in need of advocacy.

Another key activity was recruiting advocates. After a protégé had been recruited into the programme, Julie and Joanne assessed the protégé’s needs and built up a profile of the sort of person who would be most suited to be an advocate for this particular protégé. Then they started asking, via their networks and through cold calling. They took into account age, sex, location of residence and especially the sort of advocacy needed. Some protégés needed, most of all, a friend. Others needed a door-opener, who would expose them to new experiences. Others needed a protector, against abuse or destitution. Julie and Joanne were matchmakers, putting together two people who would be suited for each other.

Recruiting advocates was often very difficult. After all, not that many people are willing to make a strong commitment to protect and defend someone they have not even met. Julie would sometimes find an advocate on her first try, but more commonly she talked to a dozen people, or even several dozen, before finding the right person who was willing to be an advocate.

Next, the protégé and advocate were each prepared for their roles, and then the first meeting was arranged. A match was made. Every new match was a cause for celebration. On the board, we were buoyed by these heart-warming stories.

At the board meetings, Julie told about recruiting protégés and advocates and about making matches. She also told about ongoing relationships between protégés and advocates. Each month she or Joanne tried to contact each advocate, a process called follow-along, to see how the relationship was going, sometimes giving advice concerning challenges and sometimes encouraging advocates to be more vigorous in their efforts. The stories Julie told were both tragic and inspiring. They were tragic in revealing the despair and difficulties in the lives of many protégés and inspiring in telling of the efforts of the advocates. Sometimes advocates made a tremendous difference.

As I spent more time on the board, and took on some new roles, I learned more about citizen advocacy in Australia and elsewhere. There were perhaps a dozen active citizen advocacy programmes in Australia, most of them funded by the federal government via the Department of Family and Community Services (now the Department of Social Services). The programmes supported each other in various ways, and banded together in an association. I became the Illawarra programme’s representative on the Citizen Advocacy Association.

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Michelle and Winnie, Citizen Advocacy Perth West, http://www.capw.org.au/stories/michelle-winnie/

Achievements of the programme

Gradually I came to realise that Illawarra Citizen Advocacy (ICA) was an outstanding programme. Julie and Joanne’s passion for helping those in need, and their description of how the programme operated, had been enough to get me to join the board. I soon discovered that their passion and commitment were having impressive results. ICA was creating matches at an impressive rate, more than a dozen each year. Some relationships didn’t last all that long, but others continued for years or even decades. Julie and Joanne were supporting more than 70 relationships, requiring a huge amount of follow-along and support in addition to their challenges in finding new protégés and advocates.

Not only did ICA support a large number of relationships, but many of these were ones that involved vigorous advocacy, in which advocates had to challenge services to act. Before I joined the board, three advocates, whose protégés resided in Cram House, a facility for severely disabled children, made a complaint to the relevant government department, leading to a major investigation that led to Cram House being closed down. Vigorous advocacy can be needed when problems are serious, and citizen advocates are well placed to undertake it, because they are independent citizens who are not paid or receiving benefits from their roles as advocates. Paid advocates, on the other hand, have to be careful because their jobs might be in jeopardy if they offend powerful service providers.

Every year, the ICA coordinators would plan their activities for the year. I joined some of these all-day meetings, which were carried out following a careful protocol. One of the priorities was seeking protégés who were either quite young or quite old. These age groups are often overlooked because the individuals lack the capacity to seek assistance themselves and they are less likely to be seen as an advocate’s friend. It is a useful reminder that the roles advocates are supposed to play depend on the needs of the protégé, not the expectations of the advocates.

A certain proportion of protégés were sought who were unable to communicate. Such individuals are often highly vulnerable because they cannot tell anyone about their needs. When communication is difficult or impossible, the relationship is even less likely to be one of friendship, which normally involves mutual interaction.

This brings up another distinction, between expressive and instrumental relationships. Expressive relationships involve emotional needs of the protégé, for example for companionship, advice and role modelling. Instrumental relationships, on the other hand, involve ensuring things are done for protégés, such as finding a suitable home, avoiding prison or being protected from abuse or neglect. No personal connection is needed, yet the advocacy is vitally important.

I discovered that ICA was doing outstanding work in some of the toughest challenges: recruiting protégés who were especially vulnerable, especially in the young and old age groups; recruiting protégés who were unable to reciprocate in a relationship; and, related to this, recruiting protégés who needed only instrumental advocacy. Julie and Joanne were being successful in finding such protégés and in finding individuals who could take on the incredible challenges of being their advocates.

In 2002, I embarked on a little research project, with Julie’s assistance. In her regular follow-along discussions with advocates, she asked how many hours they had spent during the previous month on behalf of their protégés. With this information, I was able to compare citizen advocacy and paid advocacy. A paid advocate, doing what is called individual advocacy, has only a limited number of hours per week to take actions on behalf of various clients. A citizen advocacy programme, by recruiting advocates, gradually creates a network of ongoing advocacy in the community, with the different citizen advocates spending far more hours in total than any individual could do.

There are other differences too. Paid advocates are trained and often quite skilled due to their ongoing work for different clients. Citizen advocates, in contrast, develop a deep understanding of their protégés over a period of months and years, and thus, despite lack of formal training, may be able to respond to their needs in a way impossible by any paid worker.

My conclusion in the small study was that a well-functioning citizen advocacy programme can compare favourably to paid advocacy in cost effectiveness as well as the quality of advocacy.

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Heather and Lyn, Citizen Advocacy Sunbury & Districts, http://casunbury.net

Decline

My study was part of our efforts to defend citizen advocacy from hostile attitudes among some of the staff in funding bodies, who looked at just the number of advocacy actions by paid staff. So they looked at paid staff doing individual advocacy and saw figures of maybe three to five actions per working day: the paid advocate was seeing several clients daily, perhaps going to a meeting with them or visiting to ensure they are being looked after. The funders then looked at citizen advocacy programmes and said, well, you made twelve matches last year. That’s not very many actions. The funders did not take into account all the actions by the citizen advocates, who are unpaid.

This sort of bias in measurement seemed ridiculous to me, and I suspected there was something deeper, namely that funding bodies want to maintain control through close monitoring of the operations they fund. When they fund paid advocates, the monitoring is easier than with systems advocacy or citizen advocacy, in which members of the public are empowered. Who knows what they might do?

The Department of Family and Community Services organised a review of advocacy across Australia. The department’s lack of understanding of advocacy was apparent in the very title of the review, which referred to advocacy “services.” Advocacy is not a service like housing or education, but rather a voice on behalf of vulnerable people with unmet needs.

The review provided the pretext for the department’s agenda, which turned out to put the squeeze on systems advocacy and citizen advocacy, applying pressure on programmes to convert to paid advocacy. Some citizen advocacy programmes closed rather than switch. Illawarra Citizen Advocacy changed its name to Illawarra Advocacy and diverted one quarter of its funding to maintaining its citizen advocacy operations.

This was a hard choice. The alternative might have been to cease funding of citizen advocacy altogether. On the other hand, an effort might have been made to find an alternative way of maintaining support for the dozens of relationships that still existed.

Over the following few years, the parlous state of citizen advocacy in the Illawarra continued. The crunch came in 2014, when a decision was made in Illawarra Advocacy to remove the one quarter of its funding directed to citizen advocacy and use it instead for paid advocacy. A letter went out to advocates informing them of this development. The letter displayed a lack of understanding and respect for citizen advocacy in saying that protégés could seek help from the paid staff. This failed to grasp that the relationships between protégés and advocates are freely given and not an arrangement that can be transferred at someone else’s invitation. It would be like writing to family members who had stood by their children or siblings with disabilities and saying that now they could turn instead to paid staff.

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Michelle and Zak, Citizen Advocacy of Atlanta and DeKalb, USA, http://www.citizenadvocacyatlantadekalb.org/relationship-stories/michelle-zak/

Conclusion

Illawarra Citizen Advocacy, when it was most active, was one of the world’s leading programmes, creating and supporting many dozens of relationships, including ones with vigorous advocacy on behalf of highly vulnerable people. Yet in the space of a few years, the understandings and commitment that had made this success possible dissipated. A combination of resistance to citizen advocacy by government bureaucrats and lack of understanding by newer staff and board members led to the drastic actions that undermined the programme.

The options for the future are not promising. Wolf Wolfensberger, whose ideas led to the initial setting up of citizen advocacy programmes in the US in the 1970s, recognised the way human services — hospitals, prisons, welfare — started out as idealistic attempts to improve people’s lives but then degenerated into operations to control people and serve the interests of the staff in the services.

Wolfensberger’s model for citizen advocacy was built on the insight that advocacy needed to be freely given: it was not paid or given course credit. This meant the advocates had the independence to speak out and challenge services that were failing to do the right thing. The advocates did not need to worry about losing jobs or connections: they were concerned only about the protégés.

Wolfensberger thought that finding protégés and advocates and making relationships between them needed to be done by paid staff, in order to attract and maintain people with suitable skills. But obtaining the money to support programmes was a challenge. Wolfensberger saw that funding needed to be diversified, so that if an advocate challenged a funding body, and the body withdrew funding in reprisal, the programme could continue. In the US, where citizen advocacy began, obtaining funding from several different sources has always been a challenging task, and citizen advocacy has never expanded to meet the huge level of unmet needs.

In Australia, obtaining funding from several different bodies turned out to be almost impossible: private funding is far less common than in the US. Australian citizen advocacy programmes were able to obtain government funding, and for a time there was a golden age of citizen advocacy (though it seemed difficult enough at the time). When attitudes within government departments hardened against systems and citizen advocacy, the programmes were highly vulnerable, and many of them made the switch to paid advocacy at the government’s behest.

Wolfensberger recognised that advocates needed to be unpaid, but did not foresee that having paid coordinates introduced a serious weakness in the model, one that would limit the expansion of citizen advocacy and eventually undermine most citizen advocacy in Australia. Perhaps it is time to consider a modification of the model, running all the operations of citizen advocacy on an unpaid basis. Not easy, but neither are the alternatives.

Brian Martin
bmartin@uow.edu.au

Acknowledgements I thank numerous individuals involved with Illawarra Citizen Advocacy for valuable comments and inspiration,.

The surgical sugar pill

You have an accident and fracture your collarbone, so you go to a surgeon who operates to fix the fracture. After you recover from the surgery, you feel better. So you and the surgeon think the operation was a success. What could be more straightforward?

Fractured-clavicle1

            But wait a minute. Perhaps you would have recovered just as well without surgery. You went to the surgeon just after the accident, when the pain was at its worst. What would it have been like if you had let the fracture heal on its own? Perhaps the surgery was unnecessary.

Some medical researchers have carried out studies to determine whether particular surgical procedures have any benefit. A comparison between surgery and no surgery can be revealing, but still it doesn’t capture the possibility that having surgery makes you think you feel better, even though it didn’t do anything.

One study randomly assigned patients with pain from osteoarthritis in the knee into two groups. In group 1, patients had arthroscopic surgery, a minimally invasive technique, to remove arthritic spurs from the knee. In group 2, patients had arthroscopic surgery without removing spurs: the surgeons made the incisions in just the same way as for group 1, but didn’t do anything else. Guess what? Patients in both groups improved, by about the same amount. The study showed that this particular surgical procedure had no therapeutic benefit over a fake or sham surgery.

Arthroscope1

            A placebo is a treatment that has no therapeutic effect. Instead of taking a pill containing a drug, instead you take a pill that you think contains the drug, but actually it just contains sugar or some inert substance. If you get better from the sugar pill, this is called a placebo effect.

In the study of arthroscopic surgery for arthritic pain in the knee, patients who received the sham surgery got better: this was a placebo effect of surgery. The study showed that the only benefit of the real surgery was a placebo effect too.

If you want to learn about this topic, read Surgery, the Ultimate Placebo by Ian Harris. It is clear and often engaging treatment by an experienced surgeon who has done research on the effectiveness of surgery. Harris thus is ideally placed to address the placebo effect in surgery. Indeed, he admits to having carried out many of the surgeries he now believes are no better than placebo.

Ian Harris
I
an Harris

            The first part of his book is a careful explanation of the placebo effect, and why it is so powerful in surgery. The placebo effect is often thought of as purely psychological: people think the treatment will make them better, and this actually makes them better. But the effect is more complicated than this. One key factor is that most people get better anyway, without any medical or other intervention. They go to a surgeon when they’re feeling worst; after surgery, they gradually feel better, but that might have happened anyway.

Harris makes a strong plea for carrying out research that compares surgery with alternatives, including no treatment, physiotherapy or some other therapy. Furthermore, the research has to be rigorous, because if patients, doctors or researchers know who is getting the “real” treatment, for example the arthroscopy that removes bone spurs, this will taint the results through various forms of cognitive bias.

Because of various forms of placebo effect, there is a long list of treatments used by surgeons that provide little or no benefit while causing serious harm. The problem is just as great in other medical specialties. Harris addresses surgery more than others because he knows it best.

placebo pill

            For thousands of years, doctors treated all manner of illnesses by bloodletting. They mistakenly believed disease was due to problems in the blood, so getting rid of it was the solution. Most patients recovered despite this harmful practice, so bloodletting continued. There were no double-blind trials in those centuries.

However, bloodletting is only an anomaly in that it persisted so long. Since then, there have been dozens of therapies that became standard, yet there was no good evidence that they worked better than placebo. Harris provides an illuminating survey of such useless or harmful medical treatments, and then examines many currently popular surgeries, casting a sceptical eye over ones for which the evidence is thin or non-existent. Among them are back fusion surgery, surgery for multiple sclerosis, hysterectomy and caesarean section.

Harris provides descriptions of the rationales for such surgeries, including biological plausibility and trials (without comparison with placebo), as well as reasons why the evidence is inadequate. His discussions are readable; references are given in a bibliography.

Then Harris tackles the reasons why ineffective surgeries continue to be done. This is a social analysis, and includes factors such as self-fulfilling prophecies, the pressure on surgeons from patients to act rather than do nothing, and financial incentives. Most disturbing is that most surgeons do not want to subject their operations to experimental comparison with placebo surgery.

Harris says that many surgical treatments become standard practice before they have ever been rigorously tested for effectiveness. Then, when researchers propose a comparison with placebo surgery, surgeons claim that this would be unethical, because there can be no benefit to the patients randomly assigned to the placebo operation. Harris spends considerable effort countering this objection, arguing that actually it is more unethical to continue with thousands of operations for which there is no good evidence of effectiveness.

achilles_rupture1
Achilles tendon rupture: surgery?

            Part of the problem is a double standard in relation to research and clinical practice. Researchers, to undertake a study, have to submit their proposals to review boards that examine the ethics involved. However, surgeons can initiate a new approach to a condition without any scrutiny. As Harris notes, asking patients how they feel after an operation requires ethics approval but undertaking the operation does not. The result is that many new surgical treatments become common practice without any good research to back them up, and rigorous studies are deterred by the ethics approval process.

“There is no restriction on what surgical approach a surgeon uses to do an operation, so what we have is a situation where it is deemed unethical to find out the results of a new procedure and publish them (without prior approval), but it is deemed ethical to do the procedure and not publish the results.” (p. 228)

Harris has been presenting his views to surgeons for some time, and many of them are resistant. They present all sorts of arguments to continue their usual surgical practice. One of them is that if there’s a placebo effect benefit from surgery, well that’s fine. “Believe it or not, this is a commonly used argument: if people are getting better after surgery anyway, that’s great – the fact that the placebo group also got better is no reason to stop doing the surgery.” (p. 235) Harris subjects this view to withering criticism, saying that performing ineffective operations is deceptive, costly and harmful.

da Vinci surgical system
Robotic surgery: better?

            Then there is the question of what to do about ineffective surgery. Harris has advice for patients, doctors, researchers, funders and society at large, all sensible. But change will be difficult due to patient expectations, the self-interest of surgeons, and entrenched double standards concerning clinical practice and research.

Ultimately, Harris is committed to a scientific approach, and wants it applied to surgery just like it is applied to alternative therapies, about which he is dismissive. “I applaud the work of sceptical societies, but they have one flaw: they rarely (if ever) turn their scepticism towards mainstream medicine. I guess it would muddy their attacks on alternative medicine and their position that mainstream medicine is science-based” (pp. 270-271).

Harris has rare courage: he is someone on the inside willing to cast a critical spotlight on professional business as usual. In writing Surgery, the Ultimate Placebo, he is taking his criticisms, usually presented in scientific forums, to a general audience. It will be interesting to see whether this succeeds, as he hopes, in speeding the uptake of scientific findings in surgery. In the meantime, anyone contemplating surgery can benefit from this readable and informative analysis.

Surgery, the ultimate placebo

Brian Martin
bmartin@uow.edu.au

An orchestrated attack on a PhD thesis

Judy Wilyman, an outspoken critic of the Australian government’s vaccination policy, undertook a PhD at the University of Wollongong. She graduated in December 2015.

On 11 January, her PhD thesis was posted on the university’s digital repository, Research Online. On the same day, anticipating an attack on Judy and the thesis, I posted a document titled “Judy Wilyman, PhD: how to understand attacks on a research student“, which turned out to be remarkably accurate in characterising the nature of the attack, which commenced within 24 hours.

The attack included a series of biased articles in The Australian by journalist Kylar Loussikian, numerous hostile blogs and tweets, a one-sided Wikipedia page, and a petition. Never before have I heard of such an outpouring of rage over the award of a PhD in Australia.

Loussikian-story

As a sociologist, this phenomenon is fascinating in its assumptions and motivations. I am hardly a neutral observer: I was Judy’s principal supervisor at the University of Wollongong, and quite a bit of the outrage has been directed at me, my supervision and my research. On the other hand, I have considerable inside knowledge, enabling insight about the claims being made.

Given the volume of hostile commentary about Judy’s thesis, it is not possible for me to undertake a comprehensive analysis of it in a short time. Therefore my observations here are preliminary. Rather than try to provide detailed evidence to document my generalisations, I merely illustrate them with a few comments made by signers of the petition against the university and the PhD. Down the track, I hope to provide a more detailed response, including to some of the treatments that address matters of substance.

SAVN attacks

The outrage over Judy becoming Dr Wilyman can best be understood by studying the operations of the group now calling itself Stop the Australian (Anti)Vaccination Network or SAVN. Since 2009, SAVN has been attempting to censor and discredit any public criticism of vaccination, using misrepresentation, ridicule, complaints and harassment, as I have documented in a series of articles. SAVN’s agenda has been to cleanse public discourse of dissent about vaccination. Judy Wilyman has been one of SAVN’s many targets.

savn

Judy had been under attack by SAVNers for several years. Therefore, I and others at the University of Wollongong correctly assumed there would be a hostile response to her graduation. Consider two hypotheses for how I and university officials would behave in this situation.

Hypothesis 1. We would push through a sub-standard thesis.

Hypothesis 2. We would take extra care to ensure that the thesis was of requisite quality and that all university processes were followed carefully. This would include sending the thesis to technical experts and choosing external examiners of high standing.

To me, it beggars belief that anyone would believe hypothesis 1, especially given that outsiders lack information about the operation of university processes. Yet in practice it seems that many outsiders, based on limited knowledge, assume that the thesis must be no good, my supervision was inadequate and the university was derelict.

The rush to condemn the thesis and the university can be understood this way: opponents assume it is impossible to undertake a scholarly critique of vaccination policy (or at least impossible for Judy to do so). Therefore, they condemn everyone involved in the process.

Furthermore, opponents do not acknowledge that scholars can differ in their evaluation of evidence and arguments. Instead, in various scientific controversies, including the vaccination debate, dissident experts are subject to attack.

Agenda-setting

Within media studies, there is a well known and widely discussed view that mass media do not tell people what to think, but are quite influential in determining what people think about. The articles by Kylar Loussikian in The Australian apparently were highly influential in getting a lot of readers to think about Judy Wilyman’s PhD. Their agenda was set by the mass media yet, as noted within agenda-setting research, few readers realised their focus of attention had been so influenced.

UoWooWoo

Associated with media agenda-setting is the significance of framing, which is about the perspective from which people see an issue. Loussikian’s articles framed the issue as about shortcomings of a PhD thesis and the credibility of the student, the supervisor, the examiners and the university. This frame was adopted by most (though far from all) commentators.

It is an interesting thought experiment to consider the likely response to a differently framed set of articles about the thesis, in which the central issue was an attack on academic freedom by SAVN over a number of years. However, The Australian was unlikely to adopt this frame. Indeed, a couple of years earlier, an Australian journalist had adopted SAVN’s agenda against Judy.

Assumptions about scholarship

Many of the attackers seem to have assumed that scholarship and criticism of vaccination are incompatible. How else could they justify condemning the university? An alternative view is to support current Australian government vaccination policy while accepting that it can be subject to a scholarly critique.

Respectful-Insolence

SAVNers for years have proclaimed that there is no debate about vaccination, by which they mean that there are no valid objections to the dominant view. To acknowledge that a scholarly critique is possible is to accept there is something to debate. Apparently this possibility is so threatening that it must be met by denigration and abuse.

Looking at the thesis

In “Judy Wilyman, PhD” I anticipated the sorts of attacks that would be made. This was not difficult: I simply listed the methods that had been used previously. Here’s what I wrote in a section titled “What to look for in criticism”:

When people criticise a research student’s work, it is worth checking for tell-tale signs indicating when these are not genuine concerns about quality and probity but instead part of a campaign to denigrate viewpoints they oppose.

  1. They attack the person, not just their work.
  2. They concentrate on alleged flaws in the work, focusing on small details and ignoring the central points.
  3. They make no comparisons with other students or theses or with standard practice, but rather make criticisms in isolation or according to their own assumed standards.
  4. They assume that findings contrary to what they believe is correct must be wrong or dangerous or both.

The attacks on Judy’s research exhibit every one of these signs. Her opponents attack her as a person, repeatedly express outrage over certain statements she has made while ignoring the central themes in her work, make no reference to academic freedom or standard practice in university procedures, and simply assume that she must be wrong.

My preliminary observation is that most of the hostile commentary about the thesis exhibits one or more of these signs.

petition

There have been numerous derogatory comments made about Judy, me and the university, most without providing any evidence and many based on misrepresentations of the thesis. Proponents of evidence-based medicine might ponder whether it is legitimate to condemn a thesis without reading it, condemn a supervisor without knowing anything about what happened during the supervision process, and condemn a university without having any information about the operation of university procedures. (Tell-tale sign 1)

Some of the opponents of the thesis have referred to comments made by Judy in other contexts. Likewise, questions have been raised about some of my other research. This is the technique of attacking the person in order to discredit their work. (Tell-tale sign 1)

When raising concerns about a piece of research, the normal scholarly route is to send them to the author, inviting a reply, not to immediately publicise them via journalists. An alternative is to submit them to a scholarly journal for publication, in which case many editors would invite the author to reply.

Alleging there are errors in a piece of work does not on its own challenge the central arguments in the work. For this, addressing those arguments directly is necessary. Very few of the critics of Judy’s thesis have addressed any of its central themes. (Tell-tale sign 2)

The intensive scrutiny of Judy’s thesis on its own does not enable a judgement of its quality, because it is necessary to benchmark against other comparable theses. None of her critics has attempted a similarly intensive scrutiny of any other thesis, much less a set of theses large enough to enable a fair assessment of her work. Experienced examiners have assessed many theses, as supervisors and/or examiners, and are well placed to make the required judgements about quality. This is in stark contrast to outside critics, many of whom lack any experience of thesis supervision or examination. (Tell-tale sign 3)

Why is there such a hue and cry over Judy’s thesis? Many theses tackling controversial topics or taking non-standard positions are published every year. Many of the critics of the thesis apparently believe no thesis proposal critical of vaccination should be accepted at an Australian university, and that for such a thesis to be passed necessarily reflects adversely on the university. The thinking behind this seems to be based on the assumption that criticism of Australian government vaccination policy is dangerous and should be censored. (Tell-tale sign 4)

I care. I believe in freedom of thought and speech, however this unscientific bullshit has to stop. It’s endangering lives — Kate Hillard, Broome, Australia

The net effect of these techniques is striking. A group of campaigners, with a well-established agenda of attacking critics of vaccination, sets out to discredit a thesis. Disdaining accepted scholarly means of critique, they feed material to a journalist. They take sentences from the thesis out of context and assert they are wrong, going public before offering the author an opportunity to reply. They ignore the central themes of the thesis. They show no awareness of scholarly expectations in the field, instead asserting the superiority of their own judgements over those of the examiners. Based on this charade of intellectual critique, they then condemn the thesis, the student, the supervisor and the university in an orchestrated campaign.

The role of expertise

SAVNers and quite a few other commentators state or assume that vaccination policy is a scientific issue, rather than one including a complex mixture of science, ethics and politics. These commentators then jump to the conclusion that only scientific experts are qualified to make judgements about vaccination policy. There is a contradiction in their discourse, though, because few of these commentators themselves have relevant scientific expertise, yet they feel entitled to make pronouncements in support of vaccination. So their assumption is that anyone, with relevant credentials or not, can legitimately support vaccination policy but no one without relevant scientific expertise is entitled to criticise it. They ignore the significance of policy expertise.

Wikipedia-Judy-Wilyman

This is a familiar theme within scientific controversies: critics of the epistemologically dominant view are dismissed because they are not suitably qualified. There is another way to look at policy issues: all citizens should be able to have an input, especially those with a stake in the outcomes. This participatory view about science policy has been well articulated over several decades, but few of those commenting about Australian vaccination policy even seem to recognise it exists.

Many opponents of the thesis and critics of the university have declared this issue is not about academic freedom but about academic standards. This claim would be more convincing if these opponents had ever made scholarly contributions about academic freedom or if they were not making self-interested judgements about their own behaviour. Their actions show their agenda is suppression of dissent.

The SAVN message

What is the implication of SAVN’s campaign against Judy Wilyman? And why do SAVNers and others continue to attack the University of Wollongong despite lacking any concrete evidence of any shortcomings in the university’s processes? There is one underlying message and two audiences. The message is that no university should consider allowing a research student (or at least an outspoken research student) to undertake a study critical of vaccination.

The first audience is the University of Wollongong. The second audience is other universities, which are being warned off critical studies of vaccination, or indeed of any other medical orthodoxy, by the example being set by the attack on the University of Wollongong.

There is also another message, which is along the lines of “Don’t mess with SAVN. We will launch a barrage of abuse, ridicule and complaints, and use our connections with the media and the medical profession, to assail anyone who crosses us.”

The original reason I became involved in the Australian vaccination debate is that I saw SAVN’s agenda as dangerous to free speech. If adopted more widely, SAVN’s approach would stifle discussion on a range of issues.

I am therefore buoyed by the support I’ve received from my colleagues, including senior figures, at the University of Wollongong, who believe in the importance of open debate and of scholarship that challenges conventional wisdom.

It is apparent that academics and universities need to do more to explain what they do and to explain the meaning and significance of academic freedom.

Postscript

See also my other writings about attacks on Judy and her thesis.

Healing via the brain

Norman Doidge tells about the amazing possibilities for healing by using neuroplasticity.

It was a fine, quiet morning early in January 1996. When I woke up, I noticed a high-pitched sound in my left ear. This wasn’t all that worrying — a couple of times every year, I would hear such a sound for five or ten seconds, and then it went away. This time was different. The sound continued indefinitely. It was a pure tone, continuous, and was there whenever I checked. Little did I know that checking to hear whether the sound was there was the worst thing I could do.

ringing-in-the-ears

This was tinnitus, the term for ringing in the ears. Some people have multiple tones, or thumping or rumbling sounds. Some have it so bad their lives are ruined; a few commit suicide to escape the condition.

My case was minor by comparison, but still distressing. As an amateur musician, I value my hearing greatly. My doctor said I would just have to accept it, as nothing could be done.

A few weeks later, there was a new, additional sound, louder and lower pitched, in my right ear. I felt sick to my stomach. I believed the standard view that tinnitus is irreversible and potentially progressive, getting worse with time. Luckily the second sound went away after an hour.

Then, fortuitously, I heard an interview on the radio with a scientist who described a new treatment for tinnitus. I looked it up on the web: “tinnitus retraining therapy.” What I picked up was the idea that tinnitus is not a problem in the ear but rather in the brain. All the time there are signals going from the ear to the brain, for example from blood flowing through the eardrums, but normally the brain treats these signals as irrelevant, and does not bring them to conscious attention.

tinnitus3-300x200

However, occasionally these routine signals are treated as a source of alarm and raised to consciousness. My brain was treating this high-pitched tone as something to be noticed — and I did. Tinnitus retraining therapy is based on changing the brain’s response.

Apparently if you are put in a soundproof room for an hour, there is a 90% chance you will develop tinnitus — the brain is constantly monitoring sound inputs, and when there are none externally, it starts to pay attention to internally generated signals. This helps explain why people with hearing impairment are more likely to suffer from tinnitus.

There are places to go for brain retraining, but I decided to apply the principles myself. I practised ignoring the high-pitched tone. When I noticed it, I would say to myself, “That’s boring” and turn my attention elsewhere. I became much more accepting of background sounds. Rather than craving silence, as before, I welcomed the capacity to hear naturally generated external sounds.

The high-pitched tone in my left ear gradually became less frequent and less noticeable and went away entirely after several months. My tinnitus was gone as a result of retraining my brain, and I did this by conscious efforts to change how I paid attention.

Neuroplasticity

With this experience, I was attuned to the idea of brain plasticity, which refers to the capacity of the brain to rewire itself. I read about therapies for stroke that seemed miraculous. The usual idea was that because stroke destroys part of the brain, disability was permanent: limbs would be useless, speech was impaired, and so on, depending on which parts of the brain were affected.

Constraint-induced movement therapy changed all this. Rather than using only the good arm and leaving the impaired one alone, this therapy in essence tied the good limb down and forced the patient to use the damaged limb intensively, up to hours per day, with gradually increasing challenges. For example, with your impaired limb, you repeatedly attempt to put a ball through a large hoop, then a somewhat smaller hoop, chalking up hours of forced effort.

constraint-induced-movement-therapy

The effect of this is not on the limb, which wasn’t directly damaged by the stroke – though it may weaken due to non-use – but on the brain, which was. The intensive training triggers major changes in the brain: to carry out the tasks, the brain uses unaffected parts of itself to carry out the limb function. The repetitive practice induces the brain to rewire itself. With this technique, in many cases normal or near-normal function can be regained.

In 2007, Norman Doidge’s book The Brain That Changes Itself was published. It describes constraint-induced limb therapy and many other wonders that can be achieved by taking advantage of neuroplasticity. Doidge, a psychiatrist, interviewed leading researchers in the field and wrote about their work in an engaging way, often using stories of individuals to motivate discussions of more technical matters.

Norman-Doidge
Norman Doidge

Doidge was making accessible information from the frontiers of research and therapy that challenged long-established views about the brain, and offered hope where there had been little previously. I thought the book was highly important and wrote a comment about it. I could understand why it became a bestseller.

Brain-that-changes-itself

When I was young, my friends and I somehow learned that the brain was a static and degenerating organ. We would humorously remind each other that the brain loses 50,000 cells every day, a relentless downhill descent. Now I was learning that actually the brain creates new cells one’s whole life. Just as importantly, it is constantly changing its structure as well as its content. New experiences do not just add memories, but change the way connections are made in the brain. Furthermore, this can be achieved by simply thinking.

One example is a study of strengthening a little-used muscle, the one that moves your little finger away from the ring finger. One group exercised this muscle by moving the little finger against resistance. The other group simply imagined doing this without moving the little finger. Amazingly, just imagining exerting muscles in your little finger can make it stronger. Actually, the muscle may not be stronger, but the mental circuits that activate the muscle become better developed, a process that also occurs in conventional weight training. Mental rehearsals of physical actions can be effective in many fields.

The Brain’s Way of Healing

Because of the popularity of The Brain that Changes Itself, numerous people contacted Doidge, introducing him to other work on neuroplasticity. His new book, The Brain’s Way of Healing, examines various techniques and therapies that utilise neuroplasticity. Doidge again uses personal stories by healers, scientists and individuals dealing with their own health problems to motivate his descriptions of approaches to healing. Many of the stories are remarkable.

Brain's-Way-of-Healing_248w_new

John Pepper first developed symptoms of Parkinson’s disease in his 30s. After many years with declining capacities, he started a programme of moderate “conscious” walking, using his powers of concentration to force his body to move in the conventional way, rather than in the usual habitual pattern. With this approach, he was able to keep his Parkinson’s symptoms under control. What seems to have occurred is that he forced parts of his brain to consciously take over functions that are normally controlled unconsciously by brain areas that were degenerating.

Another route to healing via neuroplasticity is to shine low-intensity lasers on parts of the body, even the brain itself. This somehow causes the body to reorganise scrambled nerve systems, that send unwarranted signals, and eliminate the problem. The treatments Doidge describes seem miraculous.

Doidge is willing to examine approaches to healing that are dismissed by mainstream medicine, though always putting these in the context of the science of neuroplasticity. Doidge devotes a chapter to Moshe Feldenkrais and his methods. The Feldenkrais method is normally thought of as in the same context as the Alexander technique or Pilates, namely as some sort of alternative health modality. Doidge, however, presents Feldenkrais as a pioneer in using neuroplasticity as a tool for recovery of normal body functions, decades ahead of the laboratory studies that would explain how his methods worked.

Moshe-Feldenkrais
Moshe Feldenkrais

Other tools for healing that Doidge discusses include listening to manipulated sounds and an electronic device placed on the tongue to stimulate neuromodulation. The picture that comes across is that the brain can be stimulated to rewire itself and to function more normally by using a variety of techniques, involving virtually any way of sending signals, including using the mind to do this.

Paying attention

The key to several of the methods of healing Doidge describes is focused attention. Sustained concentration is a powerful way of creating long-term brain change. The brain is like a muscle: physical activity strengthens the components that are exercised, and paying attention is a way of doing this.

The problem is when bad mental habits take over: unlearning these habits is difficult and requires sustained effort. Doidge tells about psychiatrist Michael Moskowitz who developed chronic pain and studied research in the area until he came up with a new approach.

Moskowitz’s inspiration was simple: what if he could use competitive plasticity in his favor? What if, when his pain started – instead of allowing those areas to be pirated and “taken over” by pain processing – he “took them back” for their original main activities, by forcing himself to perform those activities, no matter how intense the pain was?

What if, when he was in pain, he could try to override the natural tendency to retreat, lie down, rest, stop thinking, and nurse himself? Moskowitz decided the brain needed a counterstimulation. He would force those brain areas to process anything-but-pain, to weaken his chronic pain circuits. (p. 13)

Moskowitz went on to conquer his own severe pain and became a pain medicine specialist, helping many others. In this case, as with other therapies, focused attention becomes a way to reprogramme the brain.

paying-attention-2-600x582
Pay attention!

Focused attention is also a powerful tool in other contexts. In the form of deliberate practice, it is the key to expert performance in many domains, such as chess, golf, writing and playing the violin. In the form of meditation or mindfulness, it is one of the most potent tools for achieving increased happiness. In these and other areas, the capacity to focus attention needs to be combined with knowledge about what to focus on and how. Research and practice are opening up new avenues, all of which exploit brain plasticity.

Conclusion

Doidge tells many stories of recovery from seemingly hopeless conditions, including chronic pain, Parkinson’s disease, brain damage and autism. The overall message is that there is hope where previously there was none. However, the treatments are not sitting on a shelf to be purchased and applied. Quite a few of them are in the early stages of development, many involve specialised equipment, and all require practitioners to have advanced skills to obtain good results. Furthermore, not every technique will work for every sufferer. And not everyone can afford to travel to specialised treatment units or to provide the intense therapy required.

If you or someone close to you has any of the conditions addressed by Doidge, it may be worthwhile to read his books as a starting point, check out his website, and decide whether to investigate further. If doctors say you will never regain a function, they might be right, but invoking the power of neuroplasticity is making some of their predictions out of date.

exercising brain

Brian Martin
bmartin@uow.edu.au

Thanks to Chris Barker for valuable comments on a draft.