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The silver scent of fear

Learning to live with epilepsy.

I was swimming in the cool, still water of the lake. I was 12 and it was my second summer at sleep-away camp. New York City is roasting and humid in July and August and so, like many of my peers, I was lucky enough to be sent off to Maine for eight weeks. The trouble was, I didn’t feel lucky. I hated Camp Fernwood – but my mother had gone there, and I was a nice kid, and I didn’t want to let her down. So I spent a lot of time, during those beautiful summers, feeling very anxious.

One afternoon, a different sort of anxiety came over me as I paddled in Thompson Lake. The memory is crystal clear, or so I tell myself. I was not far from the wooden dock. I was on my own. In an instant – a long instant – everything changed. My body changed, for a start: my heart was pounding and my vision narrowed, as if I were staring down a tunnel. I was inside of myself, and outside of myself, in a way that I had never felt before; and in the back of my throat and up towards the bridge of my nose, there was what I will call an elusive silver scent, distant and clean.

The world became a globe of terror. I wasn’t scared. I wasn’t anxious. I knew what those things felt like, and this was something else. Now I was more frightened than I had ever been. I would learn to know that terror well; nothing would ever alleviate it. Familiarity did not bring peace. My brain was making terror. There would be no escape from that.

None of these words is adequate to describe what happened to me then. Nearly 40 years have passed and I have never found the words to capture the sensation of that first seizure – and every seizure since. That first time, I didn’t know I was having a seizure. I didn’t know the word “epilepsy”. I pulled myself out of the water, somehow getting to the dock and up on to dry land. I didn’t tell anyone, just then. Everyone knew me as a worried, pain-in-the-arse kid, anyhow. Why make things worse?

A few days later, I went to see the camp nurse and told her what had happened to me. (I loved going to the camp nurse. If you were in her little cabin, you didn’t have to play tennis or softball or sing camp songs.) That summer, the nurse had her husband with her, a doctor, who was taking his summer vacation by the lake shore in Maine. She called him into the room with us and he listened. Eventually I saw my own doctor. Not long after that, my mother and I sat in the office of a paediatric neurologist. He was the first person who said epilepsy to me.

It is only now, in retrospect, that I realise how lucky I was that my mother – who was even more anxious than I, in general – did not seem unduly alarmed. At 12, I had no idea that, for many with the condition and their families, epilepsy casts a dark shadow; that a diagnosis carries the legacy of the days when sufferers were not allowed to marry, or were confined to lunatic asylums.

 

***

 

In the United Kingdom, there are about half a million people with epilepsy, although the term can mean many ­different things. There are more than 40 different kinds of seizure and these can be divided into two broad groups: focal seizures (which are also called partial seizures) and generalised seizures. Figures vary, but roughly two-thirds of those with epilepsy have focal seizures and a third have generalised seizures. They are surges of electrical activity in the brain. The pioneering British neurologist John Hughlings Jackson, who died in 1911, put it succinctly: “Epilepsy is the name for occasional, sudden, excessive, rapid and local discharges of grey matter.”

My episodes involve simple focal seizures that happen in the temporal lobe of my brain. Generalised seizures affect the whole brain and cause a loss of consciousness – the muscles of the body may relax completely, or they may jerk and cause the person to convulse. The latter is perhaps the “classic” idea that most people have of epilepsy, and it is the image that has led to epileptics (a term that is disputed) facing discrimination, throughout history and in many cultures.

In the ancient world, it was sometimes known as the “sacred disease”, but as early as 400BC physicians began to believe that epilepsy might have an organic, rather than a divine, cause. Julius Caesar’s collapse in the heat of battle in 46BC has been attributed to a seizure (though it has recently been argued that he had a series of mini-strokes); Joan of Arc’s visions may have been the result of epilepsy; the visual and auditory hallucinations of Vincent Van Gogh might have been caused by the condition; Dostoevsky has been described as the best-known epileptic in history.

As Colin Grant writes in his fine new book about the condition, A Smell of Burning, people with epilepsy are often presented with a list of this sort, as if it offered encouragement: “Look at Van Gogh, look at Caesar, look at the abolitionist Harriet Tubman – they still got on with their lives.” But this can be cold comfort. Aside from the way in which epilepsy (especially generalised seizures) can limit a person’s life, there is still a great deal of stigma attached to the disease, even in the 21st century.

It is a stigma that Ley Sander has encountered often. Sander, a Brazilian who has lived in the UK for 30 years, is a professor of neurology and clinical epilepsy at University College London; he has been the medical director of the Epilepsy Society since 2012 and also leads the World Health Organisation Collaborating Centre for Research and Training in Neurosciences in London.

He is a charming man, with bright eyes and salt-and-pepper hair. His easy smile and mischievous sense of humour put both patients and journalists at ease – but he is serious when it comes to the treatment of epilepsy and the discrimination that his patients can face. Fellow physicians are often startled that he has chosen to specialise in the disorder. They assume that he must have a personal or familial connection to epilepsy. He does not.

“It’s still a hidden condition,” Sander says. “People don’t have a problem talking about Parkinson’s, or HIV, but epilepsy – not yet. That’s very common in all sorts of societies. It remains in the shadows. I have a number of eminent people who come to my clinic, from all walks of life, and as soon as you talk to them about ‘coming out’, or being a role model, they refuse to be involved.

“I had a situation not long ago, with one very eminent person. I thought I had persuaded this person to speak out. But within two or three hours of our conversation, I had his agent on the phone, saying he was going to sue me for breach of medical confidentiality. I had not done anything – we had only discussed it.”

 

***

 

We are sitting in Sander’s airy office at the Chalfont Centre in the village of Chalfont St Peter, Buckinghamshire. The centre, a complex of nondescript buildings ten minutes’ drive from Gerrards Cross, is much more remarkable than it initially looks, as I discovered when I first visited as a patient in the spring of 2015. After I was diagnosed with epilepsy at 12, I remained on medication until I was in my early twenties, but gradually weaned myself off the tablets when it became apparent that my seizures had disappeared. This is fairly common in juvenile epilepsy. Then, a couple of years ago, without warning, they returned, like a troublesome friend from my youth showing up on Facebook, certain that we’d want to be mates again.

The seizures seemed identical to what I had experienced when I was so much younger – the same, indescribable disorientation and terror. I wish I could better express the way they feel: like being shut out of one world and shoved into another, or like shooting down some kind of wormhole of consciousness.

For about 20 minutes after they occurred, I would lose language. The names of places or people I knew as well as my own, would vanish. In the aftermath, there came a kind of exhaustion that perhaps best resembled a hangover; my husband would tell me that I looked pale and drawn. Because I am a writer, I found the brief aphasia the most upsetting aspect. What if the words never came back? They always did, but that never diminished the fear.

Occasionally I had a seizure in public – while teaching, say, or doing an interview – and I would cover for my sudden silence, my sudden pallor, by saying as soon as I could that I was very tired, that I’d had a bad night, that I was sorry. It was a measure of friendship if I felt that I could tell someone what was going on. I would feel better if I could be touched, if I my hand could be held, if I could feel another’s physical presence. Worst of all and most fearful was to be alone, in an empty house. Were you scared when you saw The Shining? Right. Like that.

I looked for a trigger – did they come when I was particularly stressed? When I was especially relaxed? There was no pattern, at least not one I could discern.

My GP sent me to the National Hospital for Neurology and Neurosurgery in Queen Square, London. There I met Professor Sander and his colleagues – and perhaps, if I’m honest, I’d expected them to send me away with reassurances that my seizures were nothing to worry about. Was this because I didn’t wish to acknowledge that my epilepsy had returned? I suppose so, though I had never felt the stigma of the condition, at least consciously. (In 2007 I published a novel called Seizure, which I don’t think I would have done if I’d wanted to keep quiet about the whole business.)

Yet anything that affects the brain in the way that epilepsy does can’t be brushed aside. The doctors at Queen Square took my condition very seriously. I was put back on medication straight away and sent for two days of testing at the Sir William Gowers Centre, which is part of the Chalfont Centre. An NHS facility, it is run by a partnership between University College London Hospitals and the Epilepsy Society. I was affected by the level of care I saw there – from doctors, nurses, support staff. Many patients, more badly affected by epilepsy than I am, were there for many days or even weeks as their condition was monitored.

The unit has 26 beds and offers video-EEG telemetry (in which the electrical activity of the patient’s brain is monitored while he or she is being videoed), advanced MRI scanning, drug-level monitoring, neuro­psychiatry and psychology. Each year, it admits over 1,300 patients from all over the UK and Ireland for assessment and treatment. Although its low buildings are nothing special to look at, its comfortable sitting room opens out on to a beautiful view of the Icknield Way, an ancient pathway that runs from Buckinghamshire to Norfolk.

The centre is one of the world’s oldest facilities for the treatment of epilepsy. The National Society for the Employment of Epileptics (now the Epilepsy Society) was founded in London in 1892; its first task was to establish a “colony” where people with the condition could live and work, because this was a time when words such as “degenerate”, “idiot” and “lunatic” were used almost interchangeably with “epileptic”.

On the walls, there are black-and-white photographs of early-20th-century residents shoeing horses, ironing and playing golf or football. Back in those days, when the place was primarily residential, rather than diagnostic, there were as many as 450 people living there. Now there are just 90 permanent residents, Sander tells me. They must be severely affected by the disorder to qualify for admission.

But understanding the condition – even in the 21st century, when it seems that medicine is so advanced – is extremely difficult. Sander, one of the leading experts in the field, confesses that offering treatment too often feels like firing “a blunderbuss”. Drugs are designed to work for a wide variety of conditions; as he tells me, drug companies want a product that works as broadly as possible, because that will bring in the most income. If you have to develop drugs that are designed for a small number of patients, that’s very expensive.

Furthermore, the causes of epilepsy – like so much else about the workings of the brain – are still little understood. Seizures happen when there is a sudden interruption in how the brain normally works but what provokes this is often a mystery, unless fits are brought on by brain injury or a tumour. Epilepsy may be hereditary but this, too, can be hard to discern, as the condition was often kept secret in families.

“I myself feel like a shaman at times,” Sander says, “because you are working in the dark and you hope that what you do will work. Dear Mary, I say, or dear John, I know you have this seizure type; we’ll try this drug and it may work. We don’t know why, if it does; and in the best-case scenario I can offer a 50 per cent chance that it will work. So I could say that even if I tried herbal tea with that person, I might get the same outcome.”

Sander told me that he didn’t expect to see or find anything in the tests I had at Chalfont: a 24-hour EEG, an MRI scan, memory and psychological tests. But, he said, at least if something about my condition changed for the worse in the future, we would have a baseline from which to work.

 

***

 

Even when drug treatment is successful, there can be problems. Colin Grant’s book is not only a history of epilepsy and the way it has been perceived and treated across cultures and centuries; it is also the story of his younger brother Christopher, who died as a result of epilepsy nearly a decade ago. A Smell of Burning paints a portrait of Christopher as a vivid and original young man who resisted treatment for his condition because the drugs he was given left him, as neurologists say, “knocked off”: dulled, sedated, his sense of self disrupted.

“Many people I spoke to said they would rather risk the occasional fit, or seizure, and be fully, 100 per cent alive and articulate than have a life that was – well, living at only 80 per cent,” Grant tells me when we meet. “I think that’s a very human response. But with Christopher, it drove his doctors and my siblings and my parents mad. They couldn’t understand it.”

It is Sander’s hope that the blunderbuss approach that Christopher resisted will change in the next decade or so. “It’s very important to put epilepsy in context,” he says. “Epilepsy is not a disease on its own. It’s a symptom, really a complex of symptoms. So in the old days, for instance, anaemia was a symptom complex” – that is, the aggregate of signs associated with the whole picture of a disease – “[but] it’s now just a symptom. We wouldn’t assess someone saying, ‘We’re going to find out why you have anaemia.’ We want to know what the anaemia is a symptom of, and then have a treatment for the cause. We have not reached that stage with epilepsy. Things will change in the next five or ten years, with progress in genomics – and then we’ll have a much better diagnosis.”

Yet even today, without such developments, when it comes to finding out the causes of epilepsy and how it might best be treated, the Sir William Gowers Centre offers a high level of sophistication. Magnetic resonance imaging (MRI) uses strong magnetic fields and radio waves to produce detailed images of the inside of the body; many hospitals have this technology but, as Sander explains, imaging departments may have to do heads, fingers and livers, all in a day. “So you might not be able to do the most protocols for imaging as you can do in a place that specialises. Our scanner is set up to do epilepsy only. A good analogy is with an orange: if you slice an orange in two planes, you’re likely to miss a seed, especially if you do your slices 5mm apart. But if you do a scan in several planes, and you do it to half a millimetre, you’ll find the seed.”

Some forms of epilepsy can be treated with surgery and the Chalfont Centre is the main facility in the UK for those who undergo these procedures. Sander sounds a note of caution. “Many patients, when they arrive, have spoken to Dr Google, and so they hear that this treatment is out there. But often [they have] very unrealistic [expectations]. More often than not, I have to tell them, ‘Sorry, you are not a candidate for this.’ Or someone is a good candidate, but they’re afraid.”

The neurosurgeon Henry Marsh echoes Sander’s sentiments. There is “no reliable data” on the percentage of patients who are suitable for such surgery, “partly because it is a question of judgement as to when epilepsy is judged ‘refractory’ – ie, not responding adequately to drug treatment –and also how early on you should consider surgery in such cases. Probably fewer than 5 per cent of people with epilepsy will be considered for surgical treatment,” he says.

Deciding to operate – as Marsh writes in his memoir, Do No Harm – is always a hugely complex, if not the most complex, part of the process. To come to such a decision, “You need an epilepsy neurologist, a neurosurgeon, a psychologist, a neurophysiologist and a neuro-radiologist. You need to find where the epilepsy is coming from. It is not always coming from an abnormality seen on the brain scan. You may need to insert electrodes into the brain, or on to the surface of the brain, to try to trace where the fit starts. You then need to decide whether it is safe to remove that part of the brain.”

Colin Grant observes this caution directly when, in the course of researching A Smell of Burning, he attends a review meeting at Queen Square of the kind that Marsh describes. Six cases are discussed; none is put forward for surgery. The team, he writes, “had erred on the side of ‘bad brain is better than no brain’”.

For the rest, such as myself, there is the prospect of a lifetime on anti-epileptic drugs. This works for about 70 per cent of patients, according to the Epilepsy Society. I am fortunate that my treatment has been successful and smooth. My seizures have stopped completely and I can sense – I don’t quite know how – that I won’t have one. I realised that, after my seizures returned (and before I went back on medication), they were always in the offing, even if I wasn’t having one. This is hard to explain, but now that I’m on medication, I just know the seizures aren’t “there”. I now see Professor Sander as a patient only once a year.

There are, however, complications to treating epilepsy other than the problems of non-compliance and the risks of surgery. Cultural attitudes to the condition vary widely and, as both Grant and Sander relate, even today there are many people who believe that epilepsy is a result of spirit possession or a curse. Grant’s family members were devout churchgoers and belonged to a Pentecostal congregation. When Christopher was 19 he had a seizure one Sunday morning. Grant writes that he arrived at church to find the congregation “weeping and wailing whilst the two elders called upon God to free Christopher from the devil’s grip”.

This is a situation that Sander confronts more often than you might think. He tells me the story of a young man who works in the City. “He has epilepsy, and he’s my patient. It was very difficult to convince him about drugs until I found out I could say, ‘Well, this drug – djinns don’t like it.’ He comes from an Asian background and his aunties [and] his mother would say, ‘This a djinn,’ when he had a seizure. So I promised him that the djinns don’t like this drug. And he came back and said: ‘You were right.’ But one of my registrars at the time argued that this was unethical, to engage with this belief. I said to the registrar that I’m only with the patient for 15 or 20 minutes. He will go back to his mother, his aunties; they will carry on talking for the next six months about the djinns. So I don’t stand a chance unless I do, too.”

Grant says almost exactly the same thing to me about his own mother. “My way of thinking would jar with her. She has a way of understanding that’s developed over many, many years. You can’t disabuse someone of that overnight.”

 

***

 

I understand the resistance to the term “epileptic”. It implies that the condition is definitive; that the whole person – my whole person – is folded ­inside the experience of seizure. Those with the condition have fought hard, over centuries, over millennia and into the present day, to live ordinary lives, to hold down jobs, to marry, to have children.

Yet I accept the term, too. I know that I would not choose to be without it. Certainly, I would not be who I am, who I consider myself to be, without it. I think it was what made me a writer: not only because I have tried and failed, over and over again, to describe what is going on inside my skull when I have a seizure, but also because I feel it has given me a profound understanding of the subjective nature of consciousness.

Confronted with the great difficulty that so many with epilepsy face, I know this seems like speaking my privilege, as the saying goes. Yet this is the truth of my experience. Maybe, I find myself thinking, it is the truest thing about me.

For more information about the condition, visit: epilepsysociety.org.uk

Erica Wagner is a New Statesman contributing writer and a judge of the 2014 Man Booker Prize. A former literary editor of the Times, her books include Ariel's Gift: Ted Hughes, Sylvia Plath and the Story of “Birthday Letters” and Seizure.

This article first appeared in the 29 September 2016 issue of the New Statesman, May’s new Tories

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We need to talk about the online radicalisation of young, white women

Alt-right women are less visible than their tiki torch-carrying male counterparts - but they still exist. 

In November 2016, the writer and TED speaker Siyanda Mohutsiwa tweeted a ground-breaking observation. “When we talk about online radicalisation we always talk about Muslims. But the radicalisation of white men online is at astronomical levels,” she wrote, inspiring a series of mainstream articles on the topic (“We need to talk about the online radicalisation of young, white men,” wrote Abi Wilkinson in The Guardian). It is now commonly accepted that online radicalisation is not limited to the work of Isis, which uses social media to spread propaganda and recruit new members. Young, white men frequently form alt-right and neo-Nazi beliefs online.

But this narrative, too, is missing something. When it comes to online radicalisation into extreme right-wing, white supremacist, or racist views, women are far from immune.

“It’s a really slow process to be brainwashed really,” says Alexandra*, a 22-year-old former-racist who adopted extreme views during the United States presidential election of 2016. In particular, she believed white people to be more intelligent than people of colour. “It definitely felt like being indoctrinated into a cult.”

Alexandra was “indoctrinated” on 4Chan, the imageboard site where openly racist views flourish, especially on boards such as /pol/. It is a common misconception that 4Chan is only used by loser, basement-dwelling men. In actuality, 4Chan’s official figures acknowledge 30 percent of its users are female. More women may frequent 4Chan and /pol/ than it first appears, as many do not announce their gender on the site because of its “Tits or GTFO” culture. Even when women do reveal themselves, they are often believed to be men who are lying for attention.

“There are actually a lot of females on 4chan, they just don't really say. Most of the time it just isn't relevant,” says Alexandra. Her experiences on the site are similar to male users who are radicalised by /pol/’s far-right rhetoric. “They sowed the seeds of doubt with memes,” she laughs apprehensively. “Dumb memes and stuff and jokes…

“[Then] I was shown really bullshit studies that stated that some races were inferior to others like… I know now that that’s bogus science, it was bad statistics, but I never bothered to actually look into the truth myself, I just believed what was told to me.”

To be clear, online alt-right radicalisation still skews majority male (and men make up most of the extreme far-right, though women have always played a role in white supremacist movements). The alt-right frequently recruits from misogynistic forums where they prey on sexually-frustrated males and feed them increasingly extreme beliefs. But Alexandra’s story reveals that more women are part of radical right-wing online spaces than might first be apparent.

“You’d think that it would never happen to you, that you would never hold such horrible views," says Alexandra. "But it just happened really slowly and I didn't even notice it until too late."

***

We are less inclined to talk about radical alt-right and neo-Nazi women because they are less inclined to carry out radical acts. Photographs that emerged from the white nationalist rally in Charlottesville this weekend revealed that it was mostly polo shirt-wearing young, white men picking up tiki torches, shouting racial slurs, and fighting with counter-protestors. The white supremacist and alt-right terror attacks of the last year have also been committed by men, not women. But just because women aren’t as visible doesn’t mean they are not culpable.  

“Even when people are alt-right or sympathisers with Isis, it’s a tiny percentage of people who are willing or eager to die for those reasons and those people typically have significant personal problems and mental health issues, or suicidal motives,” explains Adam Lankford, author of The Myth of Martyrdom: What Really Drives Suicide Bombers, Rampage Shooters, and Other Self-Destructive Killers.

“Both men and women can play a huge role in terms of shaping the radicalised rhetoric that then influences those rare people who commit a crime.”

Prominent alt-right women often publicly admit that their role is more behind-the-scenes. Ayla Stewart runs the blog Wife With a Purpose, where she writes about “white culture” and traditional values. She was scheduled to speak at the Charlottesville “Unite the Right” rally before dropping out due to safety concerns. In a blog post entitled “#Charlottesville May Have Redefined Women’s Roles in the Alt Right”, she writes:

“I’ve decided that the growth of the movement has necessitated that I pick and choose my involvement as a woman more carefully and that I’m more mindful to chose [sic] women’s roles only.”

These roles include public speaking (only when her husband is present), gaining medical skills, and “listening to our men” in order to provide moral support. Stewart declined to be interviewed for this piece.

It is clear, therefore, that alt-right women do not have to carry out violence to be radical or radicalised. In some cases, they are complicit in the violence that does occur. Lankford gives the example of the Camp Chapman attack, committed by a male Jordanian suicide bomber against a CIA base in Afghanistan.

“What the research suggests in that case was the guy who ultimately committed the suicide bombing may have been less radical than his wife,” he explains. “His wife was actually pushing him to be more radical and shaming him for his lack of courage.” 

***

Just because women are less likely to be violent doesn’t mean they are incapable of it.

Angela King is a former neo-Nazi who went to prison for her part in the armed robbery and assault of a Jewish shop owner. She now runs Life After Hate, a non-profit that aims to help former right-wing extremists. While part of a skinhead gang, it was her job to recruit other women to the cause.

“I was well known for the violence I was willing to inflict on others… often times the men would come up to me and say we don’t want to physically hurt a woman so can you take care of this,” King explains. “When I brought other women in I looked for the same qualities in them that I thought I had in myself.”

King's 1999 mugshot

 

These traits, King explains, were anger and a previous history of violence. She was 15 when she became involved with neo-Nazis, and explains that struggles with her sexuality and bullying had made her into a violent teenager.

“I was bullied verbally for years. I didn't fit in, I was socially awkward,” she says. One incident in particular stands out. Aged 12, King was physically bullied for the first time.

“I was humiliated in a way that even today I still am humiliated by this experience,” she says. One day, King made the mistake of sitting at a desk that “belonged” to a bully. “She started a fight with me in front of the entire class… I’ve always struggled with weight so I was a little bit pudgy, I had my little training bra on, and during the fight she ripped my shirt open in front of the entire class.

“At that age, having absolutely no self-confidence, I made the decision that if I became the bully, and took her place, I could never be humiliated like that again.”

Angela King, aged 18

King’s story is important because when it comes to online radicalisation, the cliché is that bullied, “loser” men are drawn to these alt-right and neo-Nazi communities. The most prominent women in the far-right (such as Stewart, and Lauren Southern, a YouTuber) are traditionally attractive and successful, with long blonde hair and flashing smiles. In actuality, women that are drawn to the movement online might be struggling, like King, to be socially accepted. This in no way justifies or excuses extreme behaviour, but can go some way to explaining how and why certain young women are radicalised. 

“At the age of 15 I had been bullied, raped. I had started down a negative path you know, experimenting with drugs, drinking, theft. And I was dealing with what I would call an acute identity crisis and essentially I was a very, very angry young woman who was socially awkward who did not feel like I had a place in the world, that I fit in anywhere. And I had no self-confidence or self-esteem. I hated everything about myself.”

King explains that Life After Hate’s research reveals that there are often non-ideological based precursors that lead people to far right groups. “Individuals don’t go to hate groups because they already hate everyone, they go seeking something. They go to fill some type of void in their lives that they’re not getting.”

None of this, of course, excuses the actions and beliefs of far-right extremists, but it does go some way to explaining how “normal” young people can be radicalised online. I ask Alexandra, the former 4Chan racist, if anything else was going on in her life when she was drawn towards extreme beliefs.

“Yes, I was lonely,” she admits.                                                       

***

That lonely men and women can both be radicalised in the insidious corners of the internet shouldn’t be surprising. For years, Isis has recruited vulnerable young women online, with children as young as 15 becoming "jihadi brides". We have now acknowledged that the cliché of virginal, spotty men being driven to far-right hate excludes the college-educated, clean-cut white men who made up much of the Unite the Right rally last weekend. We now must realise that right-wing women, too, are radicalised online, and they, too, are culpable for radical acts.  

It is often assumed that extremist women are radicalised by their husbands or fathers, which is aided by statements by far-right women themselves. The YouTuber, Southern, for example, once said:  

“Anytime they [the left] talk about the alt-right, they make it sound like it’s just about a bunch of guys in basements. They don’t mention that these guys have wives – supportive wives, who go to these meet-ups and these conferences – who are there – so I think it’s great for right-wing women to show themselves. We are here. You’re wrong.”

Although there is truth in this statement, women don’t have to have far-right husbands, brothers, or fathers in order to be drawn to white supremacist or alt-right movements. Although it doesn’t seem the alt-right are actively preying on young white women the same way they prey on young white men, many women are involved in online spaces that we wrongly assume are male-only. There are other spaces, such as Reddit's r/Hawtschwitz, where neo-Nazi women upload nude and naked selfies, carving a specific space for themselves in the online far-right. 

When we speak of women radicalised by husbands and fathers, we misallocate blame. Alexandra deeply regrets her choices, but she accepts they were her own. “I’m not going to deny that what I did was bad because I have to take responsibility for my actions,” she says.

Alexandra, who was “historically left-wing”, was first drawn to 4Chan when she became frustrated with the “self-righteousness” of the website Tumblr, favoured by liberal teens. Although she frequented the site's board for talking about anime, /a/, not /pol/, she found neo-Nazi and white supremacist beliefs were spread there too. 

“I was just like really fed up with the far left,” she says, “There was a lot of stuff I didn't like, like blaming males for everything.” From this, Alexandra became anti-feminist and this is how she was incrementally exposed to anti-Semitic and racist beliefs. This parallels the story of many radicalised males on 4Chan, who turn to the site from hatred of feminists or indeed, all women. 

 “What I was doing was racist, like I – deep down I didn't really fully believe it in my heart, but the seeds of doubt were sowed again and it was a way to fit in. Like, if you don't regurgitate their opinions exactly they’ll just bully you and run you off.”

King’s life changed in prison, where Jamaican inmates befriended her and she was forced to reassess her worldview. Alexandra now considers herself “basically” free from prejudices, but says trying to rid herself of extreme beliefs is like “detoxing from drugs”. She began questioning 4Chan when she first realised that they genuinely wanted Donald Trump to become president. “I thought that supporting Trump was just a dumb meme on the internet,” she says.

Nowadays, King dedicates her life to helping young people escape from far-right extremism. "Those of us who were involved a few decades ago we did not have this type of technology, cell phones were not the slim white phones we have today, they were giant boxes," she says. "With the younger individuals who contact us who grew up with this technology, we're definitely seeing people who initially stumbled across the violent far-right online and the same holds for men and women.

"Instead of having to be out in public in a giant rally or Klan meeting, individuals find hate online."

* Name has been changed

Amelia Tait is a technology and digital culture writer at the New Statesman.

This article first appeared in the 29 September 2016 issue of the New Statesman, May’s new Tories