In this post I’m going to briefly review three books that look at family life and disability. I’ve grouped these three together because disability affects individuals but also determine and impact life in a family. It’s easy to feel sometimes that the voices of those who live with people with a disabilty become segregated from disabled people themsleves, meaning that life in all its richness isn’t told in the round but as a series of separate stories.
I feel that our life as a family has been changed and enriched by all our family members – Great Uncle Henri, a French war veteran who was blinded in the First World War and ran an association of blind former soldiers, another French family member who had a spinal condition and my lovely great aunt Cecile, who had schizophrenia. Nearer to home my granddad was deaf, and in more recent generations family members are autistic. I don’t want to romanticise our experience of disability though – it’s not easy, dealing with stigma, poor social support and the impact of particular conditions on family life. One that has shaped my immediate family life most, depression, remains particularly poorly understood.
So I”ve been itching to look at these three books that all take a clear sighted look at disability, family life and the gaze of outside, which can other and stigmatise, making life harder than it needs to be.
Jan Grue’s memoir, I Live a Life Like Yours (Pushkin Press, 2021) is a beautifullly written memoir of Grue’s life as a journey through disability, translated by Becky Crook from the Norwegian. Grue, a Professor of Qualitative Research at the University of Oslo, draws on art, fiction and the lives of other disabled pioneers, such as the writer Mark O’Brien, to explore themes including family life, the body and relationships. It is a thoughtful meditation on how to be fully human with a disability when the external gaze is clinical or stigmatising – and how relationships with others, including his wife and son, restore a sense of subjectivity, rather than being objectified – and even judged. Grue makes the point that his life is similar to others in his family, but is experienced as different in a way that is often uncomfortable.
“I follow a timeline that others might have followed. I live in the same city where I grew up. I am an academic, a child of academics. I live a life like theirs. I am married and have a child with Ida, who is a woman who writers…These are the threads that hold my life together. This is the fabric.”
But as Grue says, when people meet him who knew him as a child, there is a sense of surprise, because he has “surpassed expectations”, prognoses. There is another sense too, that to live a life like everyone else’s, there is struggle – against the gaze, against the threat of institutionalisation, so that Grue and other disabled people are accepted, just as they are in a world of barriers where everything must be planned. “It is hard to be human beneath the institutional gaze.” Grue’s exploration of O’Brien’s own exploration of the troubled landscape of sex surrogacy and competing rights is particularly sensitive.
This is an outstanding book in which Grue’s experience becomes a fulcrum around which he explores a disabled life lived in connection with other people, both those who objectify and those who support and are supported by him being in the world, navigating it and peeling away the shame and stigma that still cling to disability like a burr on wool.
In The Cracks that Let the Light In, by Jessica Moxham (Octopus, 2021), the writer explores the subtitle – What I learned from my Disabled Son. Moxham explores how she and her husband, James, have raised their three children whilst supporting their eldest child, Ben, who uses a wheelchair and needs assistance to communicate. Life in a family with a disabled child is one where you take on the state in all its guises. Whether you like it or not you become an advocate, a campaigner for equal rights, and even pushing to raise a family becomes a political act. Life isn’t what you imagine, and Moxham feels her way through some of the thoughts that are often linked with life with a disabled child – that there is grief, even though your child is alive, for instance. Like Rue, she explores the idea that the young disabled child’s body should be put through exercises to change it, when she sees how her second son rolls and moves. “No matter how much time I had spent helping Ben roll or sit, he would not have been able to overcome the essentiall wobbliness and involuntary movement of his muscles. I am relieved rather than sad…Ben’s impairments cannot be taken away.” One vivid passage explores the fact that Ben’s disability means that he dribbles. A child at her son’s nursery calls it disgusting. There were surgical options and other interventions such as Botox. “All of these would involve recovery periods, side effects, disruption. We decided we wouldn’t intervene, but had he noticed the girl saying he was disgusting? I didn’t know whether we should reduce his dribbling to make him more acceptable to strangers…My aim is for our children to grow up thinking they are enough…I don’t want him to feel like he takes up more space than he is worth, or to force him to be a certain way because it’s perceived as more palatable.”
Moxham’s clear sense that some bodies work differently and that’s OK is nuanced, but challenging in a good way. She says she has got bolder over the years – but is also just getting on with life. “Sometimes I’m considering the careful use of particular words and tone, sometimes I’m policing other people’s language and sometimes I’m just shouting “Bum!” at my kids.
There is such a clear sense of family life going on, accepting each child’s idiosyncrasies. “We have pitched our tents on the undulating landscape of uncertainty and we’re making the most of it…we are all doing our best.”
Lastly, I wanted to mention Somebody Up There Likes Me: Living with the Threat of Huntington’s Disease (Amazon, 2021), written by Melanie Pearson about her family’s experience of being affected by the condition. Her mother and brother both had the condition, and she supported her brother through the condition. Pearson’s book is an exploration of how ignorant so many medical professionals are, and how poor the support is for those with the condition. Despite the hardship and bereavement, Pearson is very clear that this isn’t a misery memoir, but more of a road map through a condition that is hugely misunderstood, leaving families to support their members with it and the difficulty of choosing whether or not to have a test for it, knowing what your future might be.
Over this year, the tenth anniversary since the eviction of Dale Farm, I’m going to be reporting on how Gypsies, Roma and Travellers are treated in the UK. The first site I visited was Dale Farm, in Essex, well before the 2011 eviction. The veteran campaigner, Grattan Puxon, picked me up at a nearby station and drove me to meet Mary Ann McCarthy, a well-loved and respected resident at Dale Farm. I was given a warm welcome and visited again afterwards, and then often in the run-up to the eviction. I also visited other sites under threat of eviction, such as Meriden in the West Midlands, as well as horse fairs, religious meetings and protests. I got to know many families, and made friends. I also spoke to other people, like me, from the settled community.
One question that always puzzled me and that I got asked myself when my book, No Place to Call Home: Inside the Real Lives of Gypsies and Travellers (Oneworld, 2013) was published – why do so many homeowners get up in arms when a council or a family from the community wants to create a site? And what’s the effect of community after community saying, ‘not in my back yard’?
That’s what I have set out to investigate this year – how our planning system interlocks with that hostility and pushes nomadic families to the very margins of our society. I explore it in this article for Byline Times, in which I carried out a data investigation looking at where Travellers sites are located.
The results of the data analysis were shocking, but not surprising. Of the 242 sites that were mapped, 36% were within 50 metres of one or more A road, motorway, railway line, refuse/recycling, sewage or an industrial estate, canal or river; more than half (51%) were within 100 metres, 72% within 300 metres and 79% within 500 metres. Many sites were located near busy A roads and motorways (see chart below).
Given what we know about air quality and its effect on human health, I find this particularly shocking.
There are some very useful comments in the article, but I wanted to surface a couple of others here. Pauline Anderson, chair of the Traveller Movement, tells me: “Health outcomes for Gypsies and Travellers and life expectancy are the lowest in the country. Having to live in such dangerous and polluted areas because of a lack of safe stopping places and proper sites is making people ill and contributing to early death. Nomadism is not a lifestyle choice it is part of our heritage and ethnic identity which those who oppose us would like to eradicate. Proper site provision is the only answer and one which would give safety to those who are faced with nowhere to go but these squalid and unhealthy places.”
William Acker, a French lawyer, tells me that he conducted a similar investigation in France and found the same pattern. “I did the same research project as you in France, on 1,358 reception areas dedicated to Travellers. I found the same thing : ethnic relegation, state anti-Gypsyism and systemic pollution!”
The investigation was published in the week that Parliament was discussing plans to criminalise trespass, which will disproportionately affect nomadic communities. So when you read pieces about Travellers and trespass, take a look at some of the sites I mapped (two are below), near sewage stations, recycling areas and busy roads – and ask yourself how you would feel, trapped in such places. What are the pull and push factors here, and why is our planning system working to segregate whole communities in this way?
I wrote the piece above with Andrew Ellson of the Times, which you can read here, looking at the effect of the hasty implementation of Low Traffic Neighbourhoods (LTNs) on disabled Londoners.
I spoke to disabled peoples’ organisations and charities and also to individual disabled Londoners across a number of the LTNs – Islington (where I live in Finsbury Park), Ealing, Greenwich, Lewisham and Waltham Forest (in many ways the standard bearer for the schemes).
Many of the disabled people I spoke to stressed their concerns around air pollution and were fully supportive of measures to reduce air pollution and improve the built environment. They were, however, critical of councils using emergency Covid-19 powers to rush through schemes where disability needs were not considered, as they would have been during any other scheme due to the Equality Act.
This is what people had to say. I’ve removed peoples’ surnames although they provided them.
GREENWICH – JOE
“I know several disabled and elderly people who have been affected by LTNs in my borough, Greenwich, and am also disabled myself, with several ‘invisible’ disabilities. Greenwich have implemented LTNs with bollards despite objections made by residents and emergency services.
They are now looking to introduce several more LTNs, which would mean every single hill in Greenwich (and they’re pretty steep) except one, which is already adversely affected by current LTNs, would be closed to those requiring a vehicle to travel. No exemptions will be made for Blue Badge holders as stated on the council’s website. Instead, literature has suggested people either walk, cycle, scoot or ‘wheel’.
The irony is, the council recently unveiled a new Equality Charter.
So far, the council have refused to listen to our views. A letter sent to the leader of the council on 28 March signed on behalf of 2,500 residents, requesting an online meeting between the leader of the council and a handpicked number of disabled and elderly people, as well as carers across the borough, has been ignored.”
WALTHAM FOREST – CHARLES
“I’ve been shielding in my flat for months now, and am likely to remain so after the lockdown finishes. Getting out to the rest of Walthamstow and beyond is now much harder and more painful than it was before. The nearest access to the main road by car is shut and access by road to the sports field is shut. I understand the appeal of pedestrianising cities and discouraging cars, and the reasons behind it, I was able-bodied once. So many places disabled people won’t realistically be able to go now, with roads closed and the car park in the marshes being closed soon. In a life that was already restricted it is depressing. When I first came to Walthamstow in 2010 it wasn’t too bad – as a disabled driver I could get to most of the city. Since then more and more of the area has been made off-limits to cars. And so, to me”
EALING – JANE
I am the parent of child with autism and fought for special educational needs transport and blue badge holders to get exemption to access the LTN. This impacted my son’s journey by taxi to special school badly. No environmental impact assessment has been conducted for this LTN. SEN taxi drivers are personally liable for the fines and the combination of this and their unpaid time stuck in traffic caused many to quit. The Director of the public realm in Lewisham (who has responsibility for issuing the exemptions) told me that my son’s firm gained exemption. However, my son’s driver has been unable to confirm this with his firm. The Director of the public realm told me in an email that they have allowed exemption for 20 SEN vehicles through the measures and named 5 firms which have exemption. That would only be 4 cars per firm and firms like my son’s firm are pretty big operations. I doubt that 20 vehicles covers all the SEN vehicles who need exemption. A big problem has been the council’s lack of communication. Blue Badge holders have had to find out about their eligibility to apply for exemption through social media.
LORNA – EALING
I have yet to follow up with the four cases Lorna sent me in detail, but Ealing has allowed Blue Badge holders through to the LTN in which they live. However, she says: “There are many issues with this as there are many blue badge holders who do not drive but rely on Taxis and now have to pay much more expensive fares. Others rely on family to drive them around. It makes it very unequal and unfair.”
ISLINGTON – EXTRA CASES
I used the case of one Islington resident in the article (for clarity, I did not know the resident before interviewing her). This is a round-up of other cases I was told about by local people and Disability Action in Islington (DAII).
One daughter of a 90 year old man was in tears after he wet himself in the car as the journey was very delayed by the LTN; another parent with a 18 year old son with Down Syndrome had to let him urinate by the side of the road as they got stuck in traffic. He then got called a ‘paedo’ by people who saw him. Another woman has a mother with Parkinsons who lives near her. She used to pop by and see her most days by car and take her children as well. This is now extremely difficult to do, combining with a stressful job with long hours in public service.
Other cases from DAII include: • An elderly man with diabetes said he is now scared to go shopping on Holloway Road as he will get stuck in traffic and miss the time for his insulin injection. • A man with Parkinson’s said he was stuck in traffic going to Morrison’s for so long that he wet himself in his wife’s car. • A lady with arthritis says she is now spending 45 minutes in the car to visit her elderly mother for what used to be a 5-minute journey. • A man with a visual impairment is complaining of the increased number of scooters and cycles now using the pavement to avoid the traffic jams.
George Floyd was an African-American man murdered by police during an arrest in May 2020 after a store clerk alleged he had passed a counterfeit $20 bill in Minneapolis. Police officer Derek Chauvin pressed his knee into the back of Mr Floyd’s neck for more than nine minutes, as the suspect and several bystanders pleaded for his life. Mr Floyd said more than 20 times that he could not breathe and was pronounced dead about an hour after an ambulance arrived. He pleaded for his mother as he lay dying. Chauvin was found guilty of murder yesterday.
A tragic loss for his family, a kind of justice delivered, a sense that at last police brutality, particularly against people of colour, has been recognised. However, there is something more that we also need to urgently face – the use of sometimes fatal, and always highly traumatic restraint techniques used by police officers, prison guards, healthcare staff and even teachers – internationally. The focus on the US and police brutality is right and proper, but we should also point up that at least on this occasion it was challenged by a court case, and a verdict given. Here in the UK, hardly any such cases get prosecuted and some groups in authority don’t even have to record what they are doing.
The UK has a long and inglorious history of restraining disabled people.
These are iron manacles used in Bethlem Royal Hospital (also known as Bedlam, one of the world’s oldest hospitals for the treatment of mental illness) until the Victorian period. They were ostensibly used to help patients from harming themselves. I visited Bedlam, as it was known, during the research for my book Scapegoat: how we are failing disabled people (Portobello, 2011). I remember seeing a display case for the restraints – a gag, manacles, strait waistcoats. I ran into a former patient, Peter Rowbatham, who was exhibiting art work and he told me the place hadn’t been that bad, except when nurses “set us against each other to fight…they got bored. And nobody believes us anyway.”
What Peter said goes to the heart of why so many people get restrained. The wrong kind of people who don’t get listened to, who aren’t believed, whose testimonies can be dismissed as unreliable or untruthful. Would George Floyd’s family ever have received justice if a brave young woman, Darnella Frazier, hadn’t filmed what was happening in front of her, despite fearing what the police officers might do to her, and the trauma of bearing witness?
Here in the UK, we choose all too often not to believe witnesses. Some in authority take advantage of the fact that prisoners aren’t believed, people in mental health units aren’t heard – and disabled children, as I wrote in April for Unherd, are restrained and secluded in schools without any monitoring or need to even tell parents. Actor Sally Phillips told me about her son Olly’s experience: “He was pinned to the grass face down, with his arms behind his back, by a young male teacher wearing blue latex gloves while a small group of other staff looked on. Olly later said that he’d been carried through the school by four staff, one to each limb and thrown.” Model and actor Paris Hilton has also spoken out about her experience in a Utah boarding school and told me: “That small room, covered in scratch marks and smeared blood, with no bathroom, is one of the most vivid and traumatising memories I’ve ever experienced in my entire life.”
Restraint forms part of a sanctioned group of so-called “restrictive practices” used in education, health and social care settings, as well as, unsurprisingly, in prisons. In the UK, these practices are regulated with a duty “to record and report” in all settings except education. Methods include physical restraint (with a number of different holds taught), mechanical restraint (such as being tied to a chair), chemical restraint (using drugs) and the use of seclusion, with children being sent to rooms or even tents and confined within them.
Add to this the emerging practice of imposing “blanket restrictions”, whereby children are not allowed to walk, run or play with their peers, or must visit the toilet at a set time (which is often not appropriate for some disabled children), and it’s no wonder that so many parents of disabled children are terrified for their well-being.
The government, meanwhile, has proudly launched a new behaviour hub, highlighting schools that are, as the government’s behaviour tsar, Tom Bennett, told me, low tolerance for any disruption. He argued that restraint is : “incredibly rare in mainstream schools” and that the rules about restraint are adequate because it is rare, defending the use of “removal rooms and parking students separately from their classes…a common and useful part of many mainstream schools”.
So don’t expect action in England any time soon regarding restraint in schools although at least its use is monitored in other settings such as secure children’s homes, mental health units, even if it remains over-used. However, in Northern Ireland, Wales and Scotland parents whose children have been restrained are agitating successfully for change. England is lagging behind.
What’s behind our need for restraint? Of course sometimes people in distress need to be held, and sometimes people may need to be prevented from harming themselves or others. Everyone accepts that. But the overuse of restraint (and seclusion) in the UK and the US suggests something more disturbing, that it is the overt exercise of power over someone who is at that moment more vulnerable than the person restraining and that it can go wrong, without any consequences for the person who has restrained another human being. As the sociologist Ervin Goffman laid out so cogently in his analysis of what he called total institutions, where a group of people (prisoners, patients etc) could be bureaucratically controlled, unequal power relationships are justified by the needs of the institution. The institution serves itself, rather than serving those it ‘treats’ (and of course the institution can be the police, just as well as it can be a school or mental health unit). We need to be vigilant of all those situations where children and adults can be subjected to unequal power relationships and make those in power accountable to the rest of us. If it hadn’t been for Darnella Frazier it is possible that the police would never have been accountable. But a bigger question looms – what about all those people who are harmed – and even die – of restraint techniques where there are no brave witnesses or cameras to show what really goes on when the powerful abuse their positions?
In March this year (2021) the Equality and Human Rights Commission is expected to release the findings of a long-awaited inquiry into the use of what are called restrictive interventions in schools. Paused due to Covid, it will doubtless show the widespread use of disturbing techniques, including restraint that harms, isolation booths and other forms of enforced isolation. It will also show patchy information about the use of the techniques, as schools are not under any duty to record those interventions – even when they harm a child. I have been investigating the use of these interventions for over a year, talking regularly to campaigners, lawyers and regulators – and have done some freedom of information requests in schools as well – of which more later. This is another shocking example of how we are failing disabled people.
Disabled children are the most likely to experience these interventions. There are many aspects to restrictive interventions that are disturbing, but one particularly harrowing finding is that children as young as three have been subjected to them. The lives of disabled children matter as much as the lives of non-disabled children and the UK has long led the way in calling for the inclusion of disabled children in mainstream education. But factors including underfunding and poor training of teachers in knowing how to support disabled children at moments when they find school difficult may have contributed to frequent separation of children with special needs from their non-disabled class mates. This de facto segregation starts early, and means that disabled children’s experience of education diverges early from other children – even in what appears to be a mainstream setting. This leads to a parallel life for disabled children in which many are traumatised by their experience of education. At transition, when children become young adults, oftentimes they then experience a crisis – and end up in other institutions, such as assessment and treatment units (ATUs). They then get restrained and secluded again. I’ve written about the awful state of our ATUs previously.
That journey of harm starts in school – so what can we do about it? As I said, I submitted FOIs to schools across England before the outbreak of Covid-19 to find out more about monitoring, reporting and incidence. I am not going to release those results in full as they are already out of date. Schools won’t be the same after the end of lockdown. But what was clear from the FOIs was that few schools monitor their use of restrictive interventions, many do not report their use to parents or carers and incidence varies widely across schools. Different practices are also in play, depending on the training that schools receive from external providers. Some children have ended up with horrific injuries, including broken limbs and severe trauma. One child had their vision impaired as a result of restraint. Many end up with mental health impacts that then, as I said, may lead them to moments of crisis later in their lives – so that they end up experiencing similar restrictive interventions in ATUs, secure children homes, prison or mental health settings.
It’s time that a light was shone on the use of these practices in schools – and schools need to monitor them properly, report them in detail to parents and carers and be aware that these are hugely traumatic to experience. Of course teaching staff must also be protected from harm, but there are other ways of managing behaviour that don’t cause physical and mental harm.
Beth Morrison, who has campaigned to highlight the damage done by such techniques in schools, is in many ways responsible for the EHRC kick-starting this inquiry. Disabled children and their parents owe her a debt of thanks for her work. Other key figures include Nick Hobbs and the Children’s Commissioner for Scotland, Bruce Adamson and other parent campaigners including Deirdre Shakespeare and Elly Chapple. All of the parents have fought for the harm done to their children by restraint to be recognised and also for others affected. This has been a parent led campaign to reveal harm and create change – I hope the EHRC will honour their involvement and transform educational practice in this area for the next generation of children.
For me, as a writer and journalist who has investigated human rights abuses for many years, this investigation has opened my eyes into the rights of disabled children. I offered work on this important topic to most mainstream newspapers. Few of them replied and none of them thought it was news-worthy enough to make space for on the news pages. It doesn’t matter who suffered as a result of these interventions – even when Paris Hilton has spoken out about her experience and campaigned to highlight the issue it receives very little focus. It says a lot about how the media thinks of disability – and disabled children in particular – that this subject has received so little media attention.
With thanks to my publishers, here is an extract from No Place to Call Home: Inside the Real Lives of Gypsies and Travellers (Oneworld Publications, 2013) about the Roma and Sinti who were murdered during the Holocaust, along with Jewish people, trade unionists, disabled people and gay and lesbian people.
by Katharine Quarmby
No reproduction without permission from publishers
The hatred of the Roma people, intense enough in the UK, was magnified in mainland Europe. It was impossible to watch the treatment of the Roma on the continent without fear for what fate they might face should they ever be forced to leave the coun- try. Those who arrived in Britain from Europe as refugees – for example, in 1904 the ‘German Gypsies’ and then in 1911 and 1913 the ‘Gypsy Coppersmiths’ were treated with hostility and suspicion. The identity of English, Welsh and Scottish Gypsies, especially, was shaped by the Holocaust, or, as it is known by the Roma people themselves, the Porrajmos, or the Devouring (a phrase coined by the Romani scholar Ian Hancock).
Manfri Frederick Wood, an English Gypsy who fought in the Fifth Airborne Division (and who later became the first treasurer of the Gypsy Council), claimed to have been one of the first Allied soldiers to enter Belsen concentration camp after liberation. ‘When I saw the surviving Romanies, with young children among them, I was shaken. Then I went over to the ovens, and found on one of the steel stretchers the half-charred body of a girl, and I understood in one awful minute what had been going on there,’ he recalled. Charles Smith, an English Romani Gypsy and one-time chair of the Gypsy Council, later visited Auschwitz with a small delega- tion of Gypsies. ‘We stood there, a group of English Gypsies from England, there in the gas chambers. I felt sort of honoured to be there – all of us survivors of a Gypsy Holocaust that had been going on for a thousand years continuously … Auschwitz being just a peak period in Gypsy genocide.’
That sense of a collective, centuries-long experience of perse- cution remains strong today. The emotional scars also run deep, perhaps partly because this part of the Holocaust has never received the same amount of attention as the extermination of Jewish people. Yet Roma and Sinti (the second largest nomadic group) people were also judged to be racially inferior by the German authorities. They too were interned, subjected to forced labour. Many were murdered.
Historians estimate that the Germans and their allies killed around twenty-five per cent of all European Roma.61 Of the slightly less than one million Roma believed to have been living in Europe before the war, at least 220,000, and possibly as many as 500,000, are estimated to have been killed.62 According to the US Holocaust Museum, German military and SS-police units allegedly shot at least thirty thousand Roma in the Baltic states and elsewhere in the occupied Soviet Union; Einsatzgruppen and other mobile killing units were targeting Roma at the same time that they were killing Jews and Communists. In occupied Serbia, German authorities are known to have killed male Roma in shooting operations during 1941 and early 1942. Women were murdered, along with children, in mobile gas vans in 1942.
In France, between three thousand and six thousand Roma are thought to have been interned and some were shipped to German concentration camps. Romanian military and police officials deported another 26,000 Roma to Transnistria, a section of south-western Ukraine placed under Romanian administration for just two years, 1941 and 1942. Thousands of those imprisoned starved or died from disease. The Ustashe, a separatist organisation that had taken charge in the power vacuum in Croatia, exhibited particularly chilling efficiency in its campaign to eradicate the Roma. Almost all of the Roma population of Croatia, around 25,000, were murdered, most at the concentration camp of Jasenovac.
Many Roma were also incarcerated by the SS at Bergen-Belsen, Sachsenhausen, Buchenwald, Dachau, Natzweiler-Struthof, Mauthausen and Ravensbrück. In December 1942, Himmler ordered the deportation of Roma from the so-called Greater German Reich. Most went to Auschwitz-Birkenau, where the camp authorities housed them in a special compound that was called the ‘Gypsy family camp’. Altogether, 23,000 Roma were deported to Auschwitz. Conditions in the Roma compound (poor sanitation, starvation levels of rations, for example), encour- aged the swift spread of deadly diseases – typhus, smallpox and dysentery among them. Epidemics severely reduced the camp population. At least 19,000 of the 23,000 nomadic people sent to Auschwitz died there.
Perhaps the cruellest part of the Roma experience, however, was the appalling series of medical experiments carried out by the infamous SS Captain Dr Josef Mengele and others, on many young Roma children. He had received authorisation to choose human subjects for experiments from among the prisoners. Mengele chose twins and children of restricted growth, many of them drawn from the Roma population imprisoned at the camp, as his sub- jects.64 Around 3,500 adult and adolescent Roma were prisoners in other German camps, and medical researchers included some Roma for studies that exposed them to typhus and mustard gas, or gave them salt water as their only source of liquid. The Roma were also used in sterilisation experiments.
After the Second World War, discrimination against Roma continued throughout Central and Eastern Europe, beginning with the great reckoning of the horrors of the concentration camps. ‘Nobody was called to testify on behalf of the Romani victims at the Nuremberg Trials,’ Hancock noted, ‘and no war crimes reparations have ever been paid to Romanies as a people.’ There were a few mentions of the atrocities carried out against Romanies at Nuremberg, but as Grattan Puxon and Donald Kenrick point out, only six references, making up some seven sentences, in the eleven volumes of the trial transcript. For decades, the Federal Republic of Germany determined that all measures taken against Roma before 1943 were legitimate official measures against per- sons committing criminal acts, not the result of policies driven by racial prejudice. Only in 1979 did the government change tack, by which time many of those eligible for compensation had died. Even today, neo-Nazi activity in many parts of central and Eastern Europe is targeted on Romanies, according to Hancock.
In the aftermath of the Porrajmos, the shattered community turned further inwards. ‘While in the camps, the Gypsies had been unable to keep up their customs – the Romainia – concerning the preparation of food and the washing of clothes. They solved the psychological problems by not speaking about the time in the camps … Few were interested anyway. In the many books writ- ten describing the Nazi period and the persecution of the Jews, Gypsies usually appear as a footnote or small section,’ said histo- rians Donald Kenrick and Gillian Taylor.68 In the early post-war years, news trickled out that the Nazi regime had secretly collected lists of Gypsies to target and intern if they invaded Britain. The UK government had built camps for Gypsies fighting or working at home for the war effort; these were swiftly dismantled once the war was over.69 Many British Gypsies and Irish Travellers who had served during the Second World War were left with a firm sense of determination: never again.
As Charles Smith wrote to conclude his visit to Auschwitz: ‘The thing that haunts me most was a photograph of a little girl age about ten or eleven years, hair cropped, wearing her striped cloth, looking straight into the camera, her eyes filled with tears … a picture of her will always be in my mind. I will remember. I will be vigilant. As a Gypsy I owe that to my ancestors.’
2020 was grim, right? I hate to say this, but I’m looking forward to the year turning, and that 2021 brings us vaccination (everywhere) and fewer deaths and serious illnesses because of Covid-19.
One of the main communities affected particularly harshly by Covid, in terms of excess deaths, has been disabled people. This year marks the 25th anniversary since the passing of the Disability Discrimination Act, and there’s been a lot of assessment of how much has been won and lost. My publishers, Granta, re-issued a chapter of my book, Scapegoat, which looks at the rise of the movement and you can read it here, free of charge, at Granta Magazine. You can also buy the book on the same link.
I hope that this coming year we’ll see more disability activism, as journalists and activists assess progress so far.
I’m going to be doing more journalism this year, especially on disabled children and women.
This is the transcript of the talk I did for the National Gallery’s Sin series – drawing on my journalism over the last three decades. I look at how certain groups, including disabled people, migrants and Gypsy, Roma and Travellers and scapegoated – and why.
Every Society Needs a Scapegoat
Thanks very much, Christina and Joost, for inviting me to talk. I’m looking forward to knowing more about the overall exhibition on Sin and hopefully seeing it after lockdown ends.
Turning to the picture, it’s is a very arresting painting and it’s intriguing to hear more about Holman Hunt’s thinking about it.
In particular, I was struck by the fact that not only is the scapegoat expelled from the flock, but that the goat is ritually tormented before being sacrificed – I’m also struck by the idea that the sacrifice atones for the sins of society, that it carries evil away and transfers it, as well as the fact that the scapegoat is sent into the wilderness.
These ideas resonate with the investigations I have done over around three decades into marginalised groups and how and why they are subjected to violence – you can see some of the books I’ve written here.
My work has taken me to sites such as post-genocide Rwanda, but I’m also aware that there are many examples of scapegoating closer to home. My work in the UK, investigating cases of disabled people being attacked, humiliated and even killed, as well as reporting for many years on Gypsy, Roma Traveller communities in the UK and abroad, as well as on honour violence here and in Yemen, convinces me that every society has its scapegoats, even if it considers itself civilized and tolerant. A scapegoated person or group, wherever and whoever it is, is effectively separated off from the flock, so to speak, using various mechanisms and the role of the spectator – wider society or in the case of the painting, the viewer – is key to how scapegoating functions.
I’m going to talk first about those mechanisms – the use of stigma, the internalisation of difference through shame, how spectacle is used to separate us from them and how we create and characterize scapegoats that are then subjected to often violent and unjustified control.
I’ll exemplify by talking about some of the stories I’ve covered as a journalist. I’ll concentrate on disability, women subject to honour violence and how they are castigated as sinners and expelled from their communities, Gypsies and Travellers, and the tragedy of Bijan Ebrahimi, a disabled Iranian refugee, whose case brings together a perfect storm of scapegoating. As a side note, I’d like to thank the families and individuals whose stories I tell for sharing them, and for the images as well. The other pictures are all my own.
I will also end with some thoughts about how we might resist the impulse to pick particular groups or people off – and how people subjected to being targeted in this way are resisting too.
So why do societies need scapegoats?
In Imogen Tyler’s book, Revolting Subjects, she draws on the processes through which some populations are characterised as revolting and argues that modern governments operates in particular by identifying groups to target creating such as asylum seekers, people living in poverty and Gypsies and Travellers. She calls them national abjects – “symbolic and material scapegoats’ – and says that government, wider society, the media and what she calls the street – our general discourse – then amplify this notion. Once people are configured thus they can be dehumanised and of course it’s a process that often lends itself to violence. Zygmunt Baumann argues similarly that globalisation in modern times intensifies the product of what is termed human waste, or garbage can populations.
I agree with this analysis, but I also think it’s worth going back in time and looked at why societies today still need scapegoats and why it is so easy to create them.
I believe that many of our attitudes were formed back in classical times, amplified by most world religions, adopted by most cultures and that because they are generally held and amplified they are sticky, and thus adhere even today in both representation and in reality.
I looked at the history of this in my book,Scapegoat: why we are failing disabled people and also referred to in some of my other books, looking in particular at some of the powerful cultural archetypes that still engulf the lives of disabled people today.
One of the most powerful archetypes is the scapegoat.
When a crisis or disaster struck a Greek city, bringing down the ire of the Gods upon the mortals, the citizens would select an offering to appease their wrath. The scapegoat – or pharmakos, in Ancient Greek (excuse my pronunciation!), would sometimes be expelled forever from the city state, sometimes even sacrificed. All too often the offering, that cleansed and purified the nation, was a “useless” person[i] or an “outcast”.[ii] Some one “mistreated by nature”[iii] was often targeted too, it seems. All these words suggest that disabled people were all too often selected as a perfect candidate for scapegoating.
Disability has also been connected with evil – a prejudice that gains even more power in the Medieval Ages and beyond, in the time of the witch-hunts. You can see echoes of it even today, when disabled people are seen as hypersexual or when lazy depictions of disability, such as amputations or disfigurement, are still used to represent evil. In fact there’s just been pushback by disability campaigners for the way in which hand impairments have been used to signify witches – that visible difference is a stand-in for sin.
Looking at stigma in particular, this also has long historical roots. The Romans saw disability as a stigma, which would be passed on – and was thus both hated and feared. This continued throughout Mediaeval ages and the Reformation, and moving further, disabled people were set apart even in the Victorian times, with ‘lunatics’ and ‘idiots’ segregated, restrained. Eugenics – which has Greek roots, means noble in heredity and was first used by the British scientist, Francis Galton. Galton and other Fabians furthered the concept of negative eugenics, preventing recessive genes from reproduction by restricting the rights and opportunities of disabled people to breed. Not every one agreed. The writer James Joyce protested, as did the writer and journalist GK Chesterton, who said it was a ‘thing no more to be bargained about than poisoning’. But it did poison the spirit of the times, not just here but in the US. Of course it reached its logical conclusion in Nazi Germany.
The T4 Euthanasia programme started with propaganda, stressing the cost of disabled people with films showing disabled people as expensive, with strapline such as “Life is just a burden’, calling them ‘useless eaters’ and costing the length of asylum stays. Disabled children were the first to be targeted, inspired by Hitler’s interest in the Spartans, where sick and disabled children were exposed to the elements. He wrote in Mein Kampf that “the lame and the defective are a scourge on humanity.” It is estimated that at least 5000 children were murdered during the Holocaust. In fact gassing technology was piloted on the bodies of disabled children and the same personnel employed as later in the camps. But as I said, this wasn’t seen as completely out of the ordinary. At the same time, in the US, disabled people were sterilized – by 1941 estimates suggest that around 36,000 people had been sterilized. In Sweden, sterilization of disabled people was relatively routine until the ‘70s.
In Germany, the programme ramped up in 1939, with disabled adults killed from 1939 with grey buses taking disabled people away. They were known as the murder boxes. There was considerable resistance to the programme from local people and the Catholic Church and in fact it was cancelled officially in 1941. Around 200,00 disabled people were murdered.
We are currently marking the 75th anniversary of 24 landmark trials at Nuremberg. Most of the physicians who participated in the euthanasia campaign have never been successfully prosecuted – mainly because their crimes were perpetrated against German citizens. But was there another reason why they weren’t put on trial – that prevailing attitudes were so widespread that the prosecutors thought disabled people were actually burdensome?
For what happened to disabled people during the Holocaust, as well as Jews, Roma and other groups, was a ghastly reflection of views in the US and UK. We weren’t so very different, we just didn’t pursue our views to their logical conclusion. Lastly, one point about the role of the spectator. It has been claimed that to celebrate the 10,000 murder in one institution, Hadamar, the staff toasted the anniversary in the room where people were put to death and a murdered man’s body was adorned with flowers. The hospital bookkeeper then intoned a burlesque eulogy. The freakshow didn’t die out with the Victorians, it has continued to this day. I found similar spectacles with disabled people when I researched disability history – including the use of humiliation through social media, often with attacks being filmed and then shared through mobile phones. One that has stayed with me in particular was the case of a disabled woman, Christine Lakinski, described by one of her friends as funny and engaging. She collapsed in the street in Hartlepool in 2007. One group of neighbours came out and instead of phoning for an ambulance, they threw water over her, covered her in shaving foam and then one of them urinated on her as another filmed. As she lay dying. Just one of those who attacked her was convicted.
I first became aware of the concept of disability hate crime in 2007, when I covered the case of Kevin Davies, a young man with epilepsy who was imprisoned, burnt and starved in a garden shed in a small town in the Forest of Dean. His imprisonment started when he was singled out and blamed for damage to a car. His mother, Elizabeth, later told me that he was ‘always the fall guy, always the scapegoat’. By the time his body was examined in the mortuary, 10% was covered in burns and he had lost around three stones in weight.
When I first started to research disability hatred further, for a report called Getting Away with Murder, looking at hundreds of crimes and the deaths of a number of disabled men and women in particular, I was struck by how sticky these ancient concepts were – the freakshow, the idea of sin, of stigma – and of hyper sexualisation. I looked first of all and in most detail at the killings of five disabled men. The similarities were startling and my findings held true for the larger number of cases I’ve looked at since. Most were tortured, humiliated, forced to labour as slaves, attacked by friends and dehumanized.
I asked senior police officers who had investigated hate crimes how perpetrators had articulated and justified their attacks. Often they couldn’t do so or groped for reasons. The investigating officer for the death of Kevin Davies said of the motivation, “They have the opportunity, a sense of power, they get heady on it” – as much as he could find from the interviews. But one pernicious myth jumped out at me. Many of the disabled men who were killed were characterised as hyper sexualized and deviant – without any evidence that this was true. (As an aside, looking at disabled women, Australian research suggests that 90 per cent of women with an intellectual disability will have been sexually assaulted in their lifetime – 68 per cent before the age of 18. The British charity Women’s Aid reports that disabled women per se are twice as likely as non-disabled women to be assaulted or sexually abused.)
It was no surprise to me, though profoundly shocking, when the disabled Iranian refugee, Bijan Ebrahimi, was killed outside his flat in Bristol in July 2013.
He had been falsely accused of paedophila and subjected to overwhelming and awful violence. In one year alone that I investigated in Scapegoat, I found five such killings attributed to false sexual violence charges. It is a grim and familiar pattern – but years later, despite the police being aware that such allegations were highly dangerous, Bean’s pleas for help were ignored and he was beaten, and then burned to death. Here are pictures of Bijan in happier times, with his sisters, both in the Iran and in the UK.
As his sister, Manzizah, said, the family witnessed him being called a ‘foreigner’, ‘cockroach’, and being told to ‘go back to your own country’ on many occasions by some of the people in the area,’
Bijan wasn’t only targeted because of his disability, but because of his refugee status and ethnicity. In the cases of refugees and migrants, a harsh immigration regime creates a hostile environment for all refugees and migrants – whether they are Syrian children or survivors of torture from Iran. Words linked to asylum in media discourse include crime, dirty, scrounger, flood influx, tide, swamp, monsters, destruction, ruin – a rhetoric of disgust perhaps capped off by the one time Sun columnist, Katie Hopkins, discussing of migrants crossing the Mediterranean in 2015 and suggesting using gun boats for control.
“These migrants are like cockroaches.”
The first time I heard anyone being called a cockroach was when I was in Rwanda, in 1997, with the PANORAMA team investigating the aftermath of the 1994 genocide, when the minority Tutsi population was dehumanised with such words and then subjected to indiscriminate violence.
One of the people I met there was Valentina Iribagiza – her family was almost wiped out by the genocide, in the village Nyarubuye, in the south east of Rwanda. You can see her here, in front of the church where her family was killed. Valentina survived but her fingers were cut off on her right hand.She was 9 years old, and the men in pink that you can see in the other picture were men that we interviewed in prison who were accused of crimes during the genocide.
The invocation of this was also widely employed by the Nazi regime to dehumanise Jews. This othering, as Frantz Fanon explains, is a useful technique to separate off targeted groups – including colonial powers, slave-owners and now, here in the UK, some journalists.
To hear the word being repeated in the UK, and deployed against victims of violence such as Bijan, was surprising and awful. Bijan, as his sister Manzizah said, “was a kind man whose main interests at home were caring for his stray cat and for his flower baskets.” You can see him here with some of his pots, which were routinely vandalised.
As the family said, ‘When Bijan was brutally murdered…our lives changed forever. There are no words on this earth that can describe the emptiness we feel. Part of us died with him…Bijan’s young nephews have been deeply affected and have needed to seek counselling. On Sundays Bijan’s chair is empty.”
Sadly, migrants and refugees are not the only groups to be stereotyped and seen as useful whipping boys for an insider outsider view of the world. The notion of stigma, as the American sociologist, Ervin Goffman explains, is a way to understand how people and their attributes become stereotypes – as he said it is a way of looking at the “situation of the individual who is disqualitied from full social acceptance. I want to come on to look at three separate but intertwined communities in the UK, Gypsies, Roma and Travellers.
Romaphobia, according to the academic Aidan McGarry, is one of the oldest and most persistent forms of discrimination across Europe (bearing many similarities to anti-Semitism and Islamophobia). Research by the World Bank found that Roma communities faced negative attitudes similar to those faced by paedophiles or drug takers in some states, particularly in the former Eastern bloc. But we as a society are not exempt and Gypsies and Travellers, many of whom have lived here for centuries, face endemic racism. In fact when I was writing No Place to Call Home the working title of the book was Outcasts and it unfortunately still rings true nearly a decade on from when Dale Farm was cleared. You can see some of the pictures I took before, during and after the eviction and the little boy on the first slide you saw was pictured at Dale Farm days after the eviction.
Again, it’s interesting to note the language used to dehumanize the communities and set them apart from wider society. Words and descriptions include sewage, parasites, dirty, lawless and many others, including racial epithets. It’s always useful to have a group to hate. As Leanne Weber and Benjamin Bowling point out: “Visible minorities have been particularly vulnerable to exclusion beyond national borders at moments of collective identity building” – including the building of the Tudor state, when Irish Travellers and Gypsies were targeted under the Vagrancy and the Egypicians Acts. Vagabonds were targeted, dubbed enemies to the common weal and could be whipped, and burned. As the sociologist Stanley Cohen explains about what he calls ‘folk devils’ they transform through such rhetoric and action, sent as a plague on ordinary folk during a time of moral panic.
In the run up to the 2005 general election, Michael Howard, the then leader of the Conservative party, took out full page advertisements stating that there was one rule for Travellers and another for everyone else. He proposed a Gypsy law to make trespass criminal; pointing to a similar measure in the Irish Republic which he said had worked. It had. Irish Travellers came here instead, looking for a place to live, and some settled at Dale Farm.
Media rhetoric amplified those proposed measures. In particular, the Sun’s Stamp on the Camp campaign in the 2005 election – which was very similar to its 2003 Asylum Madness campaign. As Rachel Morris of the Traveller law Research Unit of Cardiff University’s Law School wrote, “as most members of the public don’t know any Gypsies or Travellers, their view of the communities is filtered through press reporting. In this way racist invective by the press infects society in a widespread way.”
The same pattern repeated itself in 2010, with the Conservatives seeking to criminalise trespass – and of course this is on the cards again now, so you can expect a similar ramping up next year.
By the time we reached the Dale Farm eviction in October 2011 – online comments in some newspapers were filled with hostility. One online comment I read called for Travellers to be gassed to death. Other comments included “a pox on these foul creatures’ and ‘acting like feral humans’. Similarly, in both France and Italy at around the same time, Roma populations were targeted and even expelled in large numbers. Attacks against Roma camps continue across Europe, with a number in France in particular.
But why are such groups targeted? The obvious answer in the UK – the justification if you like – has been that some British nomads have indeed settled on land for which they do not have planning permission and that the law should apply equally to all. That is undoubtedly true, and good relations are important. But we are talking about a small group of people who are unintentionally homeless and whose right to camp has been increasingly restricted – over centuries – as common land has been reduced. In addition, I think, just as with disability hate crime, that sticky stereotypes adhere to the communities that many in the settled population who do not know them, as Rachel Morris said, expect the worst and articulate it. The communities are useful. Crimes can be blamed on them – such as fly-tipping – and incursions into the green belt by the communities – resisted, although when developers do the same, resistance is often useless. They become a lightning rod for the discontents of a society jostling for space on a small island.
The impact of being seen in this kind of way, to be systematically dehumanized, is devastating. While of course you can’t attribute mental health issues to one cause, academic research conducted in 2007 found that members of Gypsy and Traveller communities are nearly three times more likely to be anxious than others, and just over twice as likely to be depressed, with women twice as likely as men to experience mental health problems. Further to this, researchers who conducted the All Ireland Traveller Health Study found suicide to be the cause of 11% of all deaths in the Irish Traveller community. Families Friends and Travellers, in an August 2020 report, say that other figures show that community members are six to seven times more likely to die by suicide than the general population, and there’s more research expected soon that confirms that.
Racism has a pretty good go at destroying the humanity of those targeted. It’s really important to hear the voices of those affected, rather than put our metaphorical hands over our ears.
As James Baldwin wrote In No Name on the Street, “If one really wishes to know how justice is administered in a country, one does not question the policemen, the lawyers, the judges, or the protected members of the middle class. One goes to the unprotected—those, precisely, who need the law’s protection most!—and listens to their testimony.”
I am reminded of that whenever I read what Noah Burton told me, when I visited him and his family at another site threatened with eviction in the West Midlands called Meriden. He was Dubbed the “Bin Laden of Meriden’ by one newspaper, and as a Gypsy King and Fixer by others. The families were subjected to violent threats on social media and racist graffiti and their camp was called an invasion. They were promptly blamed for local fly tipping, although local police found it was nothing to do with them. One of the group was picked out in particular by some people opposed to the settlement, for both her disability and her ethnicity.
Burton told me that he had passed for a white British man until Meriden became a story. His work then fell off once he was known. “Before I took off the disguise I never realised how much hatred there is towards me…we are a pretty easy target.” Indeed when academics Neil Chakraborti and Jon Garland looked at the concept of rural racism, they found that whilst views by the general population towards all minority groups were guarded, Gypsies and Travellers were regarded as fair game for what can only be described as vitriolic abuse. But, there were also villagers who wanted to get to know the group. One, Barbara Cookes, invited the young women in the group to help her with a charity open day. She was plagued for years after with silent nuisance calls and shunned by some people in the village.
This seems an apt moment at which to turn to honour violence, a form of scapegoating that affects both men and women, though mostly women, who step out of line. One of the key mechanisms is the separating off of those deemed sinners and therefore excluded – a horrible form of shunning. Where this talk has mostly been about how general society scapegoats minority groups, honour violence works inside communities, functioning by taking particular people and using what happens to them as a cautionary tale to others who might want to step out of line. Data on it is quite scarce, because, as Diana Nammi, the chief executive of the charity IKWRO told me, very few women come forward to “break the silence, as it’s considered a shameful act”.
But Diana Kader did, and we wrote a book about it – not as yet available in the UK.
In the summer of 2006 Diana Kader graduated from university in Manchester, with a degree in Human Sciences. She was the first in her family to gain a degree and her proud parents, neither of whom can read or write but who desperately wanted their five daughters and one son to have the education they never had growing up in rural Yemen, decided to take them back to their country of origin. Whilst they were holidaying in Yemen, a young man from a wealthy family asked for Diana’s hand in marriage. Diana didn’t know him, and turned him down, with the full support of her parents.
The suitor was persistent, and eventually Diana’s father had to be very forthright to ask him to desist. One day, when Diana was driving alone, along a desert highway, her spurned suitor ran her off the road in a petrol tanker and tried to murder her, in a botched ‘honour’ killing. Diana’s pelvis was shattered, her arm and leg broken and she sustained severe internal injuries. The suitor even phoned her father and told him what he had done before relenting and bringing her to a hospital. Eventually Diana’s family got her back to Manchester. She spent four months in intensive care and around two years in orthopedics and rehab.
When she got out of hospital, instead of being supported by community members, she was subjected by some to a campaign of violence. It had started earlier, when her parents insisted that she and her sisters get qualifications. In fact the family was targeted over an 11-year period. Since the accidence Diana has had her tyres slashed, her petrol tank contaminated, she has been attacked in the community, including attempts to run her over and her family suffered an arson attack. When I investigated, police admitted that there had been nearly 20 serious crimes recorded against Diana and her family. Only one was recorded as honour based violence. The man who ran Diana over in Yemen and nearly cost her her life has never been prosecuted, even though Diana returned to Yemen in 2010 to seek justice. Diana cannot stand for long, has to take medication and is often in pain. When she has asked former friends in the community why she and her family still face harassment, they explain that her decisions – to refuse marriage, to want to work, have cost her and her family their place in the community.” Diana Nammi, from IKWRO, explains how honour violence functions as a mechanism of control. “Diana’s resistance was seen as a threatening potential influence to other women and girls…. some community leaders will protect the traditions, norms and values of their culture, even if it ends up with the suffering of individuals and families. They want to ensure that other women won’t do the same as Diana did and to control the life of women within family and community.” As Diana Nammi says, community members may feel “under pressure not only to comply with the honour code, but to punish those who are seen to break it.” Women can pay the ultimate price and be killed. Often their killers go free, as communities close ranks.
But here’s the good part.
When Diana lay on the desert road in Yemen, with her attacker smiling down at her, she decided she would live and tell her tale, for the sake of her family, for the sake of other women in her community. Around four years after the attack Diana went back to university. She now works as a forensic scientist.
Valentina Iribigaza, who survived the Rwandan genocide, moved abroad, went to university and now has a family of her own.
The title every society needs a scapegoat contains within itself the idea of insiders and outsiders – social beings and outcasts. For us, in the general population, we have a decision to make. Going back to the painting, we can decide where we place ourselves – do we wield the knife, or do we step back, stop history repeating itself, refuse to either act or spectate?
It’s not all about us either. I’ve seen how disabled activists, and Gypsies and Travellers have become increasingly vocal about not only defending their rights but also resisting the stereotypes that perpetuate the narrative.
This year’s Traveller Pride event included a simple social media campaign this year, in which individuals from the communities talked about who they were and what they did. Breaking stereotypes, being proud, not content to pass to gain precarious acceptance. Refusing to be the scapegoat, the biggest rebuke of all.
[i] Equites, 1969, Ed D M Jones, 243, from Todd M Compton, Victim of the Muses: Poet as Scapegoat, Warrior, and Hero in Greco-Roman and Indo-European Myth And History, (Center for Hellenic Studies, 2006)
[ii]Pharmakos and Katharma as Words of Abuse, translated by HJ Vince, text from gebhard#22
[iii] W J W Koster, ed, commentarium in Ranas et in Aves Argumentum Equitum which is fasc 111 of Lydia Massa Positano, D. Holwerda, WJW Joster, Jo.Tzetzae Commentarii in Aertisophenenm, part 1V of W.J W Joster, Scholia in Aristophanem (Groningen: JB Wolters, 1960), trans Todd M Compton, 733a
A little update on my work, to explain the radio silence.
I left the Bureau after two very happy and interesting years there, ending with writing a report for the Bureau about how to make journalism there more engaged and collaborative with the communities we served. That report was internal, so I can’t share it, but I overlapped that work with a consultancy for the wonderful Membership Puzzle Project at New York University. That project was about how to make journalism more responsive to members and communities, and you can read it here.
After that project, I was hired by Liberty to found and launch a new, editorially independent journalism unit, which we called Liberty Investigates. A busy year ensued, and the unit is safely launched. You can see some of our launch journalism here:
Excitingly, I am also back at work on my book, a novel based on the true story of two young women who fall in love and are transported to Australia in the 1820s. I’ll keep you posted on that and hope to finish it soon.
I’ve just started a new job at the Bureau of Investigative Journalism, after 15 months as its digital and production editor. Here’s my take on why this is important – piece originally published on the Bureau’s website: thebureauinvestigates.com
We’re launching a three month project so that we can learn how to engage better with our readers, supporters and collaborators – and we need your help.
Since 2010, we have built our reputation as a non-profit media organisation that produces investigative journalism to empower citizens and protect democracy. We want to inform the public about how power works in today’s world. We expose wrongs, counter fake news and spark change. We do this at a local level – with our UK based Bureau Local network – and globally.
Our Bureau Local project has shown how and why homeless people are dying on the streets and shone a light on cuts to women’s refuges as well as putting shrinking council budgets under scrutiny.
Our global superbugs project has highlighted the challenge of the threat to healthcare – from resistant TB devastating the slums of India to women losing their wombs in Malawi because of antibiotic resistance. We’ve shown how major supermarkets are now using American style beef lots to raise the food we eat, with this being just one of many stories in our food and farming project.
We’ve built on one of our oldest and most established projects, tracking drone warfare, and launched a wider project, Shadow Wars, investigating President Donald Trump’s covert wars around the globe. We also consistently highlight the human cost of such hidden wars.
We’ve been able to do the work we do because foundations and a small number of individuals fund our journalism. But we want to do more.
There are many ways we could develop and expand our journalism, and get it seen and shared in more places. We could pursue our existing projects for longer, or take on new topic areas. We could use new storytelling formats and new platforms, and experiment with different ways of getting our findings to people affected and to policy makers. We could make our audiences a much bigger part of our journalism, from start to finish.
But we’ve not made up our minds yet, because we want you to be involved. So we’re going to spend the next three months listening to you about our work and hearing your ideas about our future direction. Yasmin Namini, one of our board directors who is advising on the project, asks: “What is the value of the Bureau and its investigations to our readers?”
We’d like to invite you to tell us your views on all of this. What kind of journalism could and should we be doing, and how we can communicate better with our readers and with potential new audiences? Are there particular organisations you know of that engage really well with different communities, or tell stories in exciting ways? Let us know, and give us tips on anything else we could be looking into as part of this research, by emailing email@example.com.
We’ll keep you posted, on our website and on social media, as our thinking develops.
I’m grateful to the Bureau for the opportunity to lead on this engagement project as my own work has taken me on a journey towards working more deeply with communities or what the journalist, Dan Gillmor, calls ‘the former audience’, characterised by media which reaches out to citizens and asks them to participate more deeply.
In my own case, I’ve written extensively about marginalised communities at risk of harm and exploitation but my journalism has been shaped over the last decade by a realisation that my work could be better if I worked alongside my interviewees in a deeper manner, rather than interviewing them and then speaking for them.
In my first book, Scapegoat: why we are failing disabled people(Portobello, 2011), I investigated a relatively unknown crime – that of violence against disabled people. That book was influenced by the disability movement’s mantra, ‘Nothing about us, without us’. I listened to heart-rending stories of violence, talked to the bereaved and highlighted campaigns for justice. But I also involved affected families and the disability movement itself in my work, revising some chapter sections after consultation and even sharing some draft sections of my work as I went along.
I applied some of those same lessons to my next book, No Place to Call Home: Inside the Real Lives of Gypsies and Travellers (Oneworld, 2013), where I worked alongside both settled and nomadic communities, revising my work in the light of their comments.
I’ve changed the way I do journalism as a result of my own experiences and by reading deeply about more engaged forms of journalism. In particular, I no longer feel that readers and interviewees are passive, or that it is always wrong to consult readers as a story progressed, or that their voices are only there to facilitate my own journalism. I clarified these thoughts, in a piece, ‘No More Voiceless People’ for the Society of Authors magazine, which you can read here.
Our Bureau Local homeless project, charting those who die on the streets and in temporary accommodation
But the Bureau is also enthusiastic about looking at how it can work better with its readers and communities it reports on. We already collaborate widely with networks through our Bureau Local work, but we want to do more. Like other news organisations, we are aware that journalism is under threat, and that the models that used to sustain it are no longer working on their own.
Advertising budgets have dwindled, there are constant cutbacks to local journalism, and authoritarian leaders even attack the notion of press freedom and dub good reporting fake news. This, in turn, has led to a populist rise of distrust against journalists in certain countries, though it’s not the same everywhere. Journalists also bear responsibility for some of the criticism. News and comment are often mixed. Not all news organisations fact check to the extent they should. There are big challenges – one of them being that tech companies largely control how and where people consume our work as journalists.
But we have the chance to change our journalism, and there are some great models emerging. We’re going to be talking to organisations in the US, as well as European media organisations such as Correct!v and De Correspondent, all of which have developed more participatory models of journalism (for some of their work, at least). As our Bureau Local director, Megan Lucero says: “It is crucial we report with communities, not just on them. Opening up our journalism and working closely with collaborators and readers is vital for the future of the news industry.”
A Malawian woman affected by womb loss, photographed for our Global Superbugs project
They all have one thing in common – they listen to their readers. So that’s where we’re going to start. This deeper engagement matters. Newsrooms that have reached out to their readers have changed and deepened their journalism as a result. As the Texas Tribune’s 2025 strategic plan says:
“We must prioritize our readers’ needs alongside our own. The people we’re trying to reach must be able to see themselves reflected in both our reporting and our newsroom…There is no better time to be doing this work and no better place to do it. The stakes are mountain-high. The issues in play are getting more complex. The need for explanatory journalism, for investigative journalism and for the watchdog reporting that holds public officials and institutions accountable has never been greater.”
We’re excited to embark on this dynamic process, of listening to you and reflecting on how we should change. Please get involved and share your opinions about how the Bureau is doing, what issues you’d like us to cover and how we could involve readers more deeply through principles such as co-production and collaborative working.
“We want to move away from a place where we as journalists broadcast our final findings to our readers, but instead collaborate more with our readers and supporters to decide what we investigate and how we do it, perhaps even actively involving our audience in the work,” says Bureau managing editor Rachel Oldroyd. “If we really want our work to make a positive change to society then we need to do it in collaboration with the people who live in it.”
Header picture, of a Bureau event, by Rob Stothard. All other pictures from current Bureau work areas, including global superbugs, food and farming, Bureau Local and Shadow Wars.