Indigenous rights and the climate emergency

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“The lungs of our planet are on fire” was a common refrain heard in the past days as a response to the unprecedented wildfires in the Brazilian Amazon. An international outcry from politicians, celebrities, and regular people on the internet alike, was urgent and panicked: we need to do something now or we’ll lose the forests, we’ll release high levels of carbon stored in the rainforest’s trees into the atmosphere, and we’ll lose the Amazon’s immense biodiversity. However, the focus on the inhabitants of their ancestral lands, however fleeting, came much later, even though they have been raising concerns about the Brazilian government’s rhetoric and its encouraging of illegal exploitation of indigenous land for a long time.

A couple of days before the Amazon wildfires reached global headlines, Brazilian indigenous women marched against Bolsonaro’s government. This was just one instance of the Amazon rainforest’s indigenous tribes – and in particular its women – fighting to preserve their ancestral land even when we aren’t paying attention.

Environmentalism has regained its fashionability as our winters feel like summers and our summers become infernal, and young voices are getting more earnest about what climate catastrophe would mean for them and the next generations to inhabit the planet. However, it seems like the movement has its internal issues it ought to, but doesn’t nearly as much as it should, contend with. One of the main issues with the movement was showcased when the emphasis was placed on the Amazon being the ‘lungs of our planet’ without mention of the many people who have lived there for generations and the systematic destruction of their homes, livelihood and land at the hands of governments and Western consumer behaviour. When the plight of indigenous tribes across the world are mentioned, it’s often from a Western perspective with an insidious sense of paternalism rather than highlighting the voices of the people on the front lines. The United Nations itself has said that indigenous peoples play an important role in tackling climate change. But it goes beyond just including, or even centring, indigenous voices in the climate debates. When indigenous people, in particular women, are still disenfranchised, abused, incarcerated, have trouble accessing a basic human right like healthcare and still fight for a say in how their sacred land is used, it is imperative that we do not just see indigenous peoples as resources to be used to fight the climate emergency, but as communities that are vulnerable to climate change’s effects and many social injustices. It is clear that if we are going to be serious about environmentalism, that we will have to centre indigenous voices and fight for the (human) rights of indigenous peoples.

In the Congo, Baka people have been pleading with WWF and the European Commission to stop funding a national park that threatens their way of life. Sadly, this is hardly a unique situation when it comes to indigenous people’s rights and livelihoods in the conservation industry. Human rights abuses seem to be commonplace in conservation, with a recent scandal haunting the world’s most recognisable conservation NGO the WWF. Local poor and indigenous people are being murdered, raped, attacked and shunned, all in the name of conservation. The narrative we have constructed says, sometimes implicitly and sometimes not, that we care about indigenous land and its biodiversity, but not about indigenous peoples. Simultaneously, we seem to place the blame of climate destruction squarely on the shoulders of the poor and indigenous rather than face our own patterns and unsustainable economic systems in the metaphorical mirror.

The narrative we have constructed says, sometimes implicitly and sometimes not, that we care about indigenous land and its biodiversity, but not about indigenous peoples

To have environmentalism, conservation, and climate change activism mean something, we will have to centre human rights and indigenous voices. Climate activism without social and economic justice and respecting human rights is nothing but a self-congratulatory movement that does more harm than good. Caring about, and centring, indigenous voices means taking a step back and listening when necessary as well as amplifying and lobbying on tribes’ behalf when asked.

Whether it is indigenous tribes in the Brazilian Amazon, or Baka people in the Congo, the rights of people living on, and in sync with, their ancestral land should be respected and should be front and centre in the climate debates. For our activism, lobbying, policies and worries to mean anything we need to listen and act when required. What use are lungs without the peoples that make up the body?

(consider donating to Amazon Watch, Survival International and the indigenous women’s march in Brazil.  Also consider writing your MP/MEP and sharing indigenous voices on social media)

You can’t eat money.

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Greta Thunberg, the 16-year-old climate activist that I have talked about on this blog before, seems to bring out the worst in a (mostly) male cohort across Europe. In The Netherlands, Britain and Italy, mocking the teenager and her autism seems to be a national sport. Grown men being threatened by a child who has been speaking truth to power is baffling to many of us, but let those voices not deter us from her message that is still incredibly pertinent.

When we talk about climate change, we often think about middle-class environmentalists and we focus intently on individual sins: your carbon footprint is too high, you should be vegan, you you should not take long showers, you should not use plastic bags or bottles and ideally you really ought to drive an electrical car and not have more than two children (or even better: have no children at all!). Individual acts to counter climate change are always welcome, but I am afraid the focus on personal sinfulness does little to challenge the systemic sins of large corporations, the current economic system, and the collective “climate delaying” by our governments. In addition, the narrative surrounding climate change seems to easily point the finger at the Global South, who are historically far from the worst polluters, rather than confront the West’s longstanding intransigence. This has to change.

Just to be clear, individual choices to live a sustainable lifestyle are absolutely necessary. We are all responsible for the planet because this is, to quote Pope Francis, Our Common Home after all. However, the scale of the change needed to avert climate catastrophe far exceeds what can be done by simple individual changes in lifestyle. As 70% of the green house emissions since 1988 is produced by just 100 companies it seems clear that our individual changes alone are not going to cut it. What is needed is radical, systemic, change that comes from the top. Like Vox reporter David Roberts said (and I’m paraphrasing): we will have to stop signing resolutions and producing reports at one point, and actually start implementing policy changes.

Leaving it up to the market to solve seems to be, to some, a rational response to the climate catastrophe that awaits us. But in a globalised world full of consumers where companies are the main polluters, and where the fossil fuel lobby still holds sway over decisions made by our government, it seems to me that the problem might be with the unsustainable capitalistic system we have now. If we want to steer clear from the absolute worst case scenario, we will have to do something drastic and possibly eschew capitalism altogether. Saying that, understandably, evokes memories of the 20th century’s brutal dictatorships, but there is very little preventing us from creating a system that is both democratic and does not worship the market and place it above human dignity or the survival of our planet and species. What is needed is the will and the vision of (young) ambitious policymakers and politicians who are not in the pocket of the industries that are commodifying our human experiences and ‘our common home’. We need to think beyond the current frameworks, and that includes looking beyond an unsustainable economic system that we have grown so accustomed to.

Alanis Obomsawin, the Abenaki filmmaker, once said that:

When the last tree is cut, the last fish is caught, and the last river is polluted; when to breathe the air is sickening, you will realize, too late, that wealth is not in bank accounts and that you can’t eat money.

To effect actual change that is needed on a large scale we need to move beyond the highly atomised perspective of personal sins and individual carbon footprints. The sheer scale of the task ahead of us, the task we, as stewards of the earth, are burdened with, requires a radical approach. It requires the fundamental, and collective, overhaul of our current economic and political system. It needs to go beyond good will, treaties and pledges and towards radical policy changes. This will mean that we will all have to chip in, and more than anything that the largest fossil fuel and transport corporations will need to be taxed heavily. The fact of the matter is that we can’t eat money. Our common home is more than a commodity to be passed between hands, or a resource to be continually exploited at the expense of the worlds poorest, sickest and youngest. When children are dying because of air pollution induced asthma and when people around the world are dying because of extreme weather, it is clear we have to do something. It means listening to the scientists, to the young and ambitious politicians, and to the young activists like Greta (who deserves more than mockery for her passion for the planet and her autism). Right now it is not yet too late. But how much longer can we say that?

Healthcare as a human right.

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Any discussion of universal healthcare is seemingly conducted as if it is a solely partisan issue. The left wants universal healthcare, the right doesn’t — so goes the argument. However, the fact of the matter is that the United Nations’ Universal Declaration of Human rights, article 25, states that:

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

The countries that have signed up to this declaration have implicitly or explicitly accepted healthcare as a human right. Most countries provide free or affordable healthcare to its citizens, but how it manifests for non-citizens seems to differ between countries. We can do better.

War and natural disasters seem common and omnipresent, and will likely increase with climate change. Unsurprisingly, these calamitous events will also leave the most vulnerable exposed to health risks — particularly women, children, the elderly, and the chronically ill. Particularly in war and conflict areas, getting healthcare to the most vulnerable populations can be an arduous task, made more difficult by various state actors and disparate political motivations. Attacks on humanitarian aid workers make it difficult for vital medical care to arrive to the people who need it most. The World Health Organisation’s (WHO) 2017 report estimates that 14.8 million people in Yemen have no access to healthcare, and the International Medical Corps has said that delivering healthcare to affected populations in the country is difficult with major infrastructure destroyed, and the lack of a government that could support them. In addition, Amnesty International reports that the Saudi-led coalition has restricted the access to essential goods such as medical supplies from entering Yemen. The situation in Syria is equally dire, with the WHO reporting calamitous conditions in Syrian refugee camps, and additionally refugee camps housing former members of ISIS and their children have also not received adequate medical assistance. Chatham House experts recently wrote that many people with chronic illnesses end up being under-treated in war and conflict as the nature of chronic illnesses and the nature of war make it logistically very difficult to help them. In many instances, these local makeshift hospitals end up being in rebel-held territories with Western aid organisations fearing a loss of funds if they were to support these hospitals. From a security and counterterrorism point of view this might make sense, but the fact of the matter is that vulnerable people will see their right to medical assistance denied. It is clear that healthcare as a right is often a casualty of war, with deliberate attacks on hospitals, as well as restrictions on humanitarian aid depending on whose side the territory is held by, creating more issues for the local population and constituting continuous violations of international humanitarian law and human rights.

Closer to home, it is often the case that refugees and immigrants do not get to enjoy free healthcare in the same way citizens of a country can. A report by the Equality and Human Rights Commission published in 2018, showed that asylum seekers in Britain are often afraid of seeking medical care for fear of high costs, or being tracked by the Home Office. Ambiguities and an increasingly hostile environment for migrants, refugees, and asylum seekers, create inaccessibility to healthcare for an already vulnerable group of people. Guaranteeing that everybody, regardless of background and citizenship status, gets access to healthcare that respects human rights, requires political will and leadership. Moreover, people with mental health issues are still often subject to violations of human rights in mental health care where they are often stripped of agency and dignity — this has been the observation of the UK’s parliamentary and health service ombudsman as well. In the United States, many black women are dying in childbirth because they are not listened to in health settings and their human rights are systematically violated. Worldwide, people with dementia are still fighting for their human rights to be respected. There is still a lot to be done.

So, how do we make sure that human rights are respected and guaranteed, even in disaster and conflict zones, even when someone is an asylum seeker or a refugee, and even when the patient is disabled, mentally ill or cognitively impaired? There is no simple answer, but political leadership that sees beyond manoeuvring and posturing to behold the human cost of war, conflicts, health disparities locally and globally, and the victims it makes, would go a long way. In an international setting the countries with vetos in the UN security council have a particular responsibility to look beyond political expediency and geopolitics when the stakes are so high and there are no winners. The WHO has a prime position as an intergovernmental organisation to coordinate medical response and epidemiological research, and assist local governments after a disaster or in conflict zones. Human rights organisations monitoring, researching, and advocating for human rights to be respected, in conflict and in peacetime, play a vital part in holding the powers that be to account. Academic research in how to best coordinate humanitarian aid, particularly medical aid, in disaster and conflict zones is imperative. Non-governmental aid organisations and their local partners on the ground need continued support to take care of affected citizens regardless of their affiliations in war. Disability and mental health advocates need to be listened to. And finally, as citizens we have a duty to be aware and cognisant of our human rights, the inalienability of it, and that by respecting them we are doing not only the other, but our selves, a great service. By being informed and educated on the role human rights play in our day to day lives, we can lobby and advocate our local governments, and in turn politicians of good will can effect change. Eleanor Roosevelt, the mother of the UN Declaration of Human Rights, said it best:

Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.

Women of the world unite…

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Today, March 8, is International Women’s Day — a day with socialist roots that has since been adopted by the UN and subsequently by individual countries as well. It is a moment to celebrate the women in the world and in our lives who have shown courage, strength, and love. But, during this time we also have to open our eyes to what women still go through on a daily basis, all over the world.

In the West, we often get complacent about how far we have come when it comes to women’s rights and women’s liberation. But the fact of the matter is that there are most definitely still gaps in women’s equality and liberation, even in the most progressive countries on the planet. In Europe, The Netherlands has one of the shortest maternity leaves with new mothers only getting 16 weeks of paid leave, and new fathers getting as little as a week. The United States has legal child marriage in certain states, has the worst maternal death rate in the Global North, and has no guaranteed maternity leave. In addition, black women have a maternal mortality rate that is three times higher than that of their white counterparts. To add insult to injury, famous black women, from Beyoncé and Serena Williams to the Duchess of Sussex , who celebrate their pregnancy — with all the risks involved in mind — are often criticised and in some cases even accused of faking their pregnancies. Women in the West still face a gender pay gap.  Violence against women and girls (VAWG) is still a pervasive problem. Period poverty is somehow still a thing, and gender bias in science is leading to the underdiagnosis of conditions such as autism spectrum disorder (ASD) and stroke in women.

However, many Western women and men alike, will state that we have the vote, the liberty to marry who we want, to work outside the home and plan when we have a child, so there is nothing for us to worry about. Even if an individual woman has never experienced sexism and misogyny, it is important to remember that that does not diminish the institutional and structural nature of it, nor does it diminish the experience of other women who have experienced it. To put it in the words of Audre Lorde: “I am not free while any woman is unfree, even when her shackles are very different from my own.”

In the spirit of Lorde, let us look further afield and remember how different shackles look around the world. Years ago we learnt about Malala Yousafzai’s plight — of her being shot by the Taliban simply for wanting to go to school. Just last year Nadia Murad won the Nobel Peace Prize for her work in raising awareness to the plight of Yazidi women who are being sold as sex slaves by Daesh, and the genocide that has been perpetuated against Yazidis at Daesh’s hands. A couple of months ago, Rahaf Al-Qunun fled Saudi Arabia’s repressive guardianship system that renders women perpetual minors, and after harrowing hours at a Thai airport found refuge in Canada. Nimco Ali has been fighting to end female genital mutilation in the UK, Christine Schuler-Deschryver has been aiding women in finding power and strength, and facilitating therapy, after they have experienced being raped as a weapon of war in the Democratic Republic of Congo, and Indian nuns have spoken up about the abuse they faced at the hands of priests and the institutional protection the perpetrators have been granted. These are the people we are aware of and whose names we hear and stories appear on the news. But let’s not forget the women still fighting to get an education, the Yazidi women who are still fleeing Daesh, women’s rights activists in Saudi Arabia, such as Loujain Al-Hathloul still being jailed for fighting for women’s rights, women in South Sudan are being raped as a weapon of war, female genital mutilation is still happening both locally and abroad, and female victims of sexual abuse in the Catholic Church are still coming forward.

There are women fighting across the world whose names might never be known by all of us. The news we hear surrounding health, war, and science often affect the most vulnerable in society most, and most often those include women. Being Western feminists it might be easy for us to become comfortable and take our education, right to vote, and freedom for granted, but these were things fought for by our ancestors who have, at times paid the price with their blood. While we fight for and support women in our midst who are married as children, undergo FGM, fighting for equal pay, fighting for substantial maternity leave and affordable childcare, fighting to be heard and listened to so they don’t have to die in childbirth, and to end violence against women and girls locally, let us also remember our sisters who are jailed in Saudi Arabia, raped as a weapon of war in South Sudan and Syria, prevented from going to school because they’re girls, the fight for liberty and justice for Yazidi women, and fight for our health to be taken seriously in the medical and scientific communities. Let’s listen to women throughout of the year, not just on March 8. Lest we forget that none of us are free when any other woman is unfree — even if her shackles are different to ours.

Climate change, anti-vaxxers, and ‘alternative facts’.

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The last days of February were somewhat of a shock to the system of humans and nature alike, as temperatures rose to 21 degrees celsius in Kew, and many parts of Northwestern Europe saw April-like weather conditions. Whilst most people were enjoying the sun by lunching in parks, eating ice cream, and chatting on terraces, something about these scenes were equally unsettling. Clearly these temperatures are far from normal, and enjoying it felt an awful lot like the famous meme where Jay-Z bobs his head to music with an anxious expression on his face.

The Intergovernmental Panel on Climate Change (IPCC) recently released a report detailing what will happen if the Earth warms by 1.5 degrees celsius or by 2 degrees, and issued stark warnings. The World Health Organisation (WHO) warned of the health risks associated with climate change and an increased air pollution, and unsurprisingly the poorest people in low income countries who are far from the biggest polluters, will bear the brunt of the detrimental effects of climate change. In August 2018, 16 year old Greta Thunberg became somewhat of a celebrity when she started the school strikes for climate action that have become a phenomenon across Europe as of late. Expected petulance from the adults in the room aside, climate change has been firmly on the table. Whether through Greta and her age cohort’s school strikes, the IPCC’s reports, or Alexandria Ocasio-Cortez’s “Green New Deal“, climate change is something finally talked about in earnest. The interesting phenomenons that come with this increased attention for climate change, are both climate change deniers and climate delayers.

Climate delayers (thanks for coining the term, AOC) are the climate change deniers more respectable cousins. These are people who are aware of the devastation of climate change, but are reluctant to support or enact drastic reform of laws and regulations to make a meaningful difference to reverse, or more realistically lessen, the devastation that awaits us and our progeny. These are often politicians who will say that they are already doing more than they should, and expediently postpone any major changes for long enough so the next administration can not deal with the issue. Climate change deniers are the people (like the US president) who have an absolute commitment to denying all the scientific evidence for global warming and climate change, and are hostile to any measures taken to mitigate the effects of climate change. This outright denial of the evidence is an interesting phenomenon. As we all know, countering climate change denial with facts or insults do not help change people’s minds — in fact, they might even get more entrenched and double down on their views even more (this is called cognitive dissonance). It is easy to believe that many of the climate change denying politicians have some kind of vested interest in maintaining the status quo, but the reasons why the general public might not believe in climate change are less obvious and more disparate. These reasons range from misinformation (‘alternative facts’ if you’re Kellyanne Conway), to a lack of knowledge on what global warming entails or what the consensus really is.

This brings me on to anti-vaxxers. Anti-vaxxers are often young, middle-class parents who have chosen not to vaccinate their children because vaccines cause autism. Let me make it absolutely crystal clear: vaccines DO NOT cause autism. There is no evidence for this, and Andrew Wakefield is a disgraced physician who lost his license because of his shoddy and unethical study. Those are the facts based on countless scientific studies, but relaying those facts will probably cause cognitive dissonance if it is someone’s strongly held belief that vaccines are a Big Pharma conspiracy that will endanger their child.

Recently, there have been countless measles outbreaks across the world, with, for example the European Centre for Disease Prevention and Control identifying a suboptimal vaccination coverage to create herd immunity as the culprit. Many of the people who fell victim from this outbreak were young children who were too young to be vaccinated (and who, just like the immunocompromised, herd immunity is meant to protect). Just like with climate change, there seem to be people who are aware of the function and effectivity of vaccines, but think parents’ right to choose trumps public health. An argument can be made that if we are proponents of liberalism, individual liberty is of prime importance. Even so, John Stuart Mill, the father of liberalism, proposed that “The only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others”. Indeed, I would argue that governments being more diligent about getting at least 95% of the population vaccinated — perhaps even making them mandatory for those who aren’t immunocompromised — fits perfectly within Mill’s harm principle. Particularly when there are so many people who suffer without any choice in the matter, because of somebody else’s parent’s decision not to vaccinate their children. The most vulnerable in society bear the brunt of this, again, not unlike with climate change. Indeed, the WHO has named a lack of vaccination as one of the biggest threats to global health. Whilst low- and middle income countries, despite challenges, do their best to get vaccinations to the most vulnerable populations, there are instances where Westerners reintroduce preventable diseases to countries that had finally put a handle on them, and even export the fearsome stories of what might happen to vaccinated children. A recent example of exported disease it that of the French family who reintroduced measles to a measles-free Costa Rica. Situations like this give an eerily colonialist feel to the case. But I digress…

Whether it is climate scepticism, or anti-vaxxers, how we change people’s minds is a difficult question to answer. It is clear that questioning parents’ love for their children, or insulting climate sceptics is not working. Perhaps, in the case of climate change deniers, Greta and her peers’ strategy of striking until the grownups finally listen is a good idea. Maybe we should all be lobbying politicians, striking, signing petitions, at least so the policymakers end up doing something — the rest of the population might follow. When it comes to those firmly believing in the anti-vaccination movement it is important that we try to tackle these harmful untruths with evidence and understanding. Moreover, public health officials ought to do a better job at educating the population, the government ought to be more diligent in tackling misinformation, and journalists should stop inviting ‘both sides’ to create a sense of false balance. Scepticism is not a bad trait. Indeed, even a dose of scepticism towards established science is not necessarily a bad thing. But it is up to critical citizens to find factual and truthful answers to their questions based on research and scientific evidence, and why it is that scientists have reach consensus over something. I promise you, scientists do not reach consensus easily. So, I leave you with some sage advice: please, don’t believe everything you read on Facebook.


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Most, if not all, women and girls have at one point carried their entire bag to the toilet to hide the fact that they’re on their periods. Perhaps, they’d slip their pads or tampons into their sleeves so as not to offend or alert the people around them of the fact that their bodies are experiencing a perfectly normal (albeit not strictly necessary) monthly biological process. Periods are still stigmatised. Period poverty is a term that has gained some traction in recent years, particularly in Scotland where the Scottish government has put into place ways to eradicate it. Period poverty refers to women and girls being unable to afford sanitary products, which in turn causes women to turn to toilet rolls, rags and cloths instead.  Indeed, period poverty is even keeping girls out of school! This is why the Scottish government pledged to provide free sanitary products in every school, college and university, and in England there are movements to provide the same for girls there.

Further afield, period poverty and stigma are, unsurprisingly, also an issue. Not unlike women and girls in the UK who cannot afford sanitary products, women in many low- and middle income countries (LMIC) also resort to using rags, cloths, and in some cases animal skin or leaves to absorb menstrual blood. In many cases women and girls also lack safe and private (single sex) bathrooms and toilets, clean and running water, and soap to keep themselves clean and comfortable during their menstrual cycle. This often leads to girls dropping out of school, and women not working. Periods are not a very glamorous issue to talk about (not unlike many other issues that affect mainly women), but it is definitely a global health issue.

Discussing periods is often taboo in many LMIC where women on their periods are seen as ‘unclean’, and at times even shunned for the duration of their periods where they have to stay in unsanitary, cold and unsafe menstrual huts, where many women and children often end up dying. In many instances women and girls hold misconceptions and fears surrounding menarche (first period) and subsequent periods, with many harbouring fear of infertility or curses (and Sommer et al., 2014). A lack of access to proper hygiene during the menstrual cycle can lead to a higher risk of infections, and bodily odours can lead to further stigmatisation. Menarche can also have a mental health effect on girls, who often feel anxious and sad about a ‘loss of childhood’ once they have experienced their first period. Thus, beyond the physical issues that a lack of access to sanitary products, hygienic toilets and sanitation, and the risk of infection that comes with it, the stigmatisation of periods and the cultural associations, taboos and silence surrounding it can have a detrimental effect on mental health as well.

That is not to say that all hope is lost. Just like the community activists in the United Kingdom, there are many women in LMIC who are fighting to make menstruation and women’s health more accessible and acceptable to talk about and are fighting to end period poverty all around the world. NGOs such as Myna Mahila, which gained some more international recognition after the Duchess of Sussex’s involvement, and organisations such as Plan and the UN are also trying to play their part. Not unlike tackling the stigma of dementia in LMIC, it is important for us to understand the cultural contexts and aid local community activists where possible.

In Western feminism we talk an awful lot about ’empowerment’, but sometimes seem to forget that at the end of the battle for empowerment there is supposed to be power. For women to gain more power and influence in a truly more equitable society, it is imperative that women can get an education, take charge of their own lives and most importantly do not feel like prisoners in their own bodies. We have long known that once women are more educated, there is a decline in poverty, and once women are financially independent there is a decline in vulnerability to sex based violence. If we truly believe in empowerment for women, we will need to fight to remove the taboos and stigma surrounding menstruation and eliminate period poverty whether it occurs in Scotland or in India, the United States or Uganda. It’s not just a women’s rights issue — it’s a human rights and a global health issue. An issue that should, and hopefully will, be eliminated once and for all.

Dementia, global health, and policy.

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When we think of dementia we often think of the elderly, probably in care homes, possibly our own family. Most of our visions are of dementia’s manifestation in high income countries. The truth of the matter is, that an estimated 58% of people with dementia live in low- and middle-income countries (LMIC) . To add insult to injury, it was estimated that only 10% of the research into dementia is focused on people living with it in LMIC (Prince et al., 2008).

Many people in LMIC will go undiagnosed, as people often see dementia as a normal part of ageing and those suffering are often stigmatised. Seeing dementia as a normal part of ageing is in and of itself not limited to LMIC, as many people in high income countries at the very least seem to think it is a kind of inevitability. Moreover, stigma certainly also still exists in the West. Many people who are diagnosed indicate that they feel isolated, that their lives are over, that people stop treating them as fully human, and in extreme cases in certain parts of the world elderly people — primarily women — with dementia are accused of witchcraft and ostracised, and in the worst cases, even killed. 

Because dementia is a disorder that will affect more and more people as populations, on average, get older and older, it is often seen by organisations such as the World Health Organisation (WHO) and Alzheimer’s Disease International as a global health priority. Global health is a relatively new concept, with a relatively vague definition, but is generally taken to mean the promotion of equality when it comes to access and quality of healthcare worldwide. Global mental health, has a similar remit only focused on the psyche rather than (just) the physical body. Although these ideals are lofty, and the UN declared health care a human right (article 25 of the UN Declaration of Human Rights — I suggest you give the whole thing a read), there is always the looming possibility of Westerners imposing their own view on others; some would even go as far as to say it is a form of neocolonialism. That does not, however, mean that I think we should throw out the baby with the bathwater. Global (mental) health can be directed by the people of the Global South with the Global North and its institutions (such as the UN) aiding and advocating on their behalf. This means employing, and listening to, locals who will take the cultural sensitivities into account (examples include Chief Kiki Laniyonu Edwards who works to tackle stigma of dementia in Nigeria; Zimbabwean grandmothers offering therapy, Benoit Ruratotoye, a Congolese psychologist trying to tackle violence against women and particularly help the spouses of women raped as a weapon of war to come to terms with what happened, or Women for Afghan Women) . It means adjusting our diagnostic manuals and criteria so that they are relevant and valid within the country’s specific cultural context. It is working together with the spirit of true equality, seeing the people in LMIC/Global South not as people we need to convert, but people we can work with for the benefit of us all.

Returning to the lack of basic research on dementia and its manifestations in LMIC, I think it is important as scientists to be aware of our own biases and our tendency to extrapolate and apply our Western experience to that of everybody else. It is important for researchers in LMIC to have the funds and means to conduct studies on the manifestation of not only dementia, but mental health issues, in their own people and in their own cultures. It is vital that Western universities collaborate, not as superiors but as true and equal partners with the desire to bring about equality in access and quality of healthcare.

I am of the belief that basic scientists, local experts, global health professionals and policymakers would be best served in working together. Issues such as dementia and depression have different cultural manifestation in different cultural contexts. It is vital that policy is made on the basis of scientific knowledge, local knowledge, cultural sensitivity and a genuine belief in promoting equality of access and quality of healthcare. Perhaps the UN as an institution, and definitely its human rights declaration, is too optimistic or idealistic in a world full of violent realities. But it is most certainly the kind of hope and optimism we need on this blue planet we all share. Combining our knowledge (both Western and non-Western, scientific and traditional), using our privileges for good, and looking beyond our own bubble without superiority is the only way we can get closer and closer to the lofty dreams and aspirations of a truly equitable world where human rights, including the right to healthcare, are respected.

Policy and science.

Man making speech

An unofficial rule in science seems to be that you do not get involved in politics. Of course, the hierarchical structure of academia is all about politics, but it is not that kind of politics — party politics. Government politics. Messy politics. The kind of politics that involves pesky humanities graduates from elite universities, that involves campaigns and lobbyists. Not the ‘real world’ politics. That does not mean that scientists are not politically engaged: au contraire! You will find many a scientist lamenting the state of local or global politics (in the UK this usually pertains to Brexit), yet there are few scientists that are actively involved in politics or policy from the inside. That should change.

There seems to be a mutual misunderstanding between policymakers and scientists when it comes to policymaking. Scientists seem to be apprehensive about policy and the messy business of government where compromises are necessary, and the cold hard facts don’t always seem to be the most important factor when making decision. On the policy side of the equation, policymakers think science is too slow and scientists are too ignorant about the realities of the real world where that compromises and appealing to a large base are par for the course. It seems like an impossibility to bring these two together, but it’s my belief that the expertise of scientists is, and should be, highly valued in policy, and policy should be at the very least valued by scientists in return.

Scientists are primarily trained in being able to ask the right questions, being curious, critical and evidence-based. At the moment, it seems like government and policy is in dire need of more evidence and critical thinking rather than less, suggesting this is the perfect moment for scientists to take a chance on policy and politics. In the spirit of compromise, for policymakers to accept scientific advice, scientists will need to be less closed off and elitist about their profession (or vocation, if you will) and looking at politics with disdain. Scientists see themselves as seekers of truth and knowledge — as people who are trying to understand the world and make it a better place. Politicians, lobbyists and policymakers, so it goes, are only in it for money, power and influence. This is, however, a gross and unhelpful oversimplification. Policy affects all of us; governing, advising and creating policies for government and opposition, is in many respects not dissimilar to science. It requires evidence and a critical eye. Contrary to what we might initially believe, lots of policymakers and lobbyists do their best to influence government policy for the greater good and not just for their own benefit. That does not negate the fact that we’re living in tumultuous time where politicians pontificate about the public being tired of experts. This is very much the reason that I believe we need more scientists who are passionate about affecting policy and politics.

But to encourage more scientists to take the leap — whether that is to leave academia altogether and work for an NGO or the civil service in a full-time capacity, or simply advising government and policymakers on the side — we need to value the messy domain of politics more. Senior academics ought to encourage young postgraduate students who have an interest in policy and advocacy rather than stifle their interest to branch out. Many funding bodies are already seeing the value of giving postgraduate (PhD) students a taste of government, but we need supervisors to be just as keen for their students to explore public life. Furthermore, senior academics and group leaders could lead by example by participating in governments advisory committees and showing that dabbling in the domain of politics is not a bad thing. On their part, policymakers would do well to stop seeing scientists as out of touch elitists with no understanding of the workings of the real world: scientists ultimately are citizens who live in the real world too! In the end, if we’re going to affect change, and make the lush green Earth we have to share with each other a better place, we’ll have to take a more interdisciplinary approach. Scientists and policymakers need each other: that, in the end, is the only way forward.

Let’s talk about Brexit.

blue and yellow round star print textile
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At this point in time it is absolutely understandable that nearly every person in the EU27 and UK has the urge to start screaming into a pillow the minute they hear the word ‘Brexit’. The UK’s (or rather England and Wales’) decision to leave the European Union in 2016 has turned out to be, not completely unexpectedly, a complete omnishambles (to quote our favourite Alastair-Campbell-inspired Scot named Malcolm Tucker (The Thick of It)).

We have already heard the stories about Brexit being bad for the NHS, how it will make running out of groceries a real possibility, will potentially tear families apart, and will generally make life more difficult for EU citizens in the UK, and UK citizens in the EU. However, science is another, perhaps underreported, casualty of the UK’s decision to leave the EU. The most obvious way Brexit will affect UK science (particularly if the ever more likely ‘no-deal’ scenario becomes a reality) is by the reduction of EU funding available to researchers in the UK. Funding is one of the pillars of science, and though Horizon 2020 eligibility will not be affected post-Brexit, funding from the likes of the European Research Council will very definitely not be available to UK researchers (see also the British Neuroscience Association’s latest update on Brexit). Unless the UK government will fully compensate the lost EU funding (with the state of the current government you would be forgiven if you were rather…pessimistic about that prospect), it seems likely that the fuel that keeps the scientific enterprise going could soon run out…or at the very least be reduced.

In addition to the issue of funding, the simple fact that the majority of non-UK researchers in academia come from other EU countries is a major issue. A no-deal Brexit where the UK becomes a third country and EU citizens will have to go through the tedious immigration constraints that already haunt non-EU, non-UK researchers, will very likely make the UK a less attractive option for EU scientists. Add to that the fact that many UK researchers have worked or trained abroad (including in the EU), that about 35% of postgraduate researchers in the UK are from the EU, and that over 5000 EU researchers brought EU funding with them, you can see that we have a bit of a sticky situation.

In a Nature editorial published late September, it is outlined that the tangible effects of Brexit are already seen. UK researchers are seen as a risky bet by EU academic institutions and these universities are therefore teaming up with institutions somewhere other than the UK. Of course the issue of funding comes up yet again, but more poignant to me is the fact that many UK and EU scientists are feeling uncertainty. Believe it or not, scientists are people too! They fall in love, they move abroad, they have children, they build lives, and make friends like everyone else. UK scientists in the EU and EU scientists in the UK will not only be feeling the effects of Brexit in their careers, but also psychologically and socially. Mixed marriages and relationships will be complicated by the uncertainty. Some EU countries do not allow dual nationalities, forcing scientists (and others) to make the unfair choice between the country of their birth and the place they currently call home. Sometimes it gets even messier with citizen children and non-citizen parents or partners. Understandably some EU citizens got worried after the Windrush scandal broke this summer, with fears of a Home Office “mistake” being repeated in the future.

Regardless of one’s opinion on Brexit, I think we can agree that the way it is currently being handled by the UK government is suboptimal. It is incumbent upon the UK government to see Brexit a little less as some quest to sort out internal party conflict, or to stubbornly carry out a very subjective interpretation of a mandate, and more as something that will affect millions of people, businesses, families, and importantly, science. A bit more level-headedness and rationality and a bit less rhetoric would at the very least make the situation a lot less painful.

Brains have bodies.

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I’m a neuroscientist. Or, well, an aspiring one (let’s not get into the philosophical discussion of when it is that someone can call themselves a scientist. That’s a whole other post for another day). When I mention that people automatically assume a lot of things, with the most common assumptions being an incredible intelligence, and perhaps a lack of social life. However, to some people science also carries with it a connotation of distance; of the ivory tower; of something experts do over ‘there’ that has no bearing on the average person’s life in the ‘real world’. In the very worst case scenario, people might assume malevolence — that you’re in the hands of Big Pharma to propagate vaccinations, or part of China’s elaborate plot to make US manufacturing non-competitive by creating (and apparently recruiting the scientific community to proselytise) the concept of ‘global warming’. The musings of the Leader of the Free World aside, I think there is some merit to the claim that science is at times far removed from the ‘real world’. Sometimes that is a good thing, and sometimes that can cloud our judgment.

In February 2017 The Atlantic published an article about advances in technologies used in neuroscience, and the criticism some scientists have when it comes to using these techniques. These critics warn of the spectre of reductionism looming over our quest to understand the brain. John Krakauer and colleagues (2017) published an article in Neuron discussing the problem of reductionism in neuroscience. They postulate that the advances in technology have created a class of researchers who are well-versed in the novel techniques, but have a tendency to disregard the organism: behaviour, development and evolution are treated as secondary to the neural circuits and the exciting new technologies. As mentioned in the The Atlantic article, wanting to include behavioural research is at times looked at with scepticism in the neuroscientific community, with the idea that behavioural research is the sole domain of psychology as an underlying apprehension. However, it disregards the fact that the lines between psychology and neuroscience are often much blurrier than people give it credit for (not to mention the fact that inferring behaviour from circuits seems to be the wrong order to go at it). Basic biomedical research into disorders such as autism spectrum disorder (ASD) can at times run the risk of disregarding the voices of the autistic community who have called for conditions such as ASD, previously simply classed as ‘disorders’, to be seen as variants of normal human behaviour instead (see more on neurodiversity here).

Neuroscience is hardly the only life science that runs the risk of forgetting the human component of research or treatment. Medicine is famously known for occasionally treating patients as their illnesses and conditions rather than human beings. One reason for this, it is suggested, is caused by the need to distance oneself from the patient and consequently individual responsibility for what happens to the patients. In his book Do No Harm, Mr Henry Marsh hypothesised that a practice as common in neurosurgery as shaving a patient’s head might have its origin in dehumanising the patient in order to make it easier for the surgeon to operate. However understandable it may be to distance oneself, and prevent oneself from getting emotionally attached to patients, it is surely possible to do that without veering into the territory of dehumanisation.

Recently, Ed Yong in The Atlantic, looked at the ethics of a virus study that resurrected a dead horsepox virus. It is more important, the argument goes, to push the boundaries and expand knowledge, even if it is at times at the expense of ethics or concern for global consequences. The scientific quest for knowledge is an honourable one, however, in my opinion, scientists cannot disregard ethics or consequences to humans and the environment in pursuit of it.

I doubt anybody expects scientists to make these ethical decisions on their own, or to constantly think of all the possible consequences of their research. However, I believe all of the aforementioned cases highlight the importance of communication outside of the (biomedical and/or scientific) community with ethicists, psychologists, government, and importantly the public. If we want government, the public, and our colleagues in the humanities to respect science and its place in society, then we have to be more responsible as a community. In the life sciences in particular it is important to avoid reductionism and to remember that most of the research we do will affect people. We cannot recklessly sacrifice our humanity in the quest for knowledge consequences be damned. Science is not removed from society, and if we want the public to believe us when we say that we will have to act as if we believe it ourselves.