Thieving Black Man(liness): When Cultural Appropriation Becomes Entirely Necessary

I was brought up by my posh white single mum, in a lower middle-class suburb of Leeds. I was one of about ten non-white kids in a high school of fifteen hundred. The dickheads at school soon made clear what was wrong with me; I was too posh, not manly enough, and not sufficiently black (for my appearance).

Figure 2.1 ‘Erislandy Lara vs. Carlos Molina at Fight Night at The Cosmopolitan of Las Vegas’ by The Cosmopolitan of Las Vegas, 2011. Licensed under CC BY-ND 2.0.

The message was clear. I had to become less posh, manlier, and blacker. To me, all these things were clearly linked. A half millennium of racist mythologising means they’re probably linked for you too. Think about the words Black Man and let an image form in your mind. Is it posh? Or at some deep level do you code that working class is manlier than posh, that black is more hypermasculine than white?

My problem was that I was posh, I hardly knew any adult men, and I literally knew no black people my age. As you might have guessed by this point, my Tanzanian dad wasn’t exactly a big part of my childhood. If I wanted to become someone manly and black, and therefore in my mind the opposite of posh, I was going to have to improvise.

We usually talk about cultural appropriation as something big, and something bad. It’s black and white minstrel shows, it’s the Washington Redskins refusing to change their name, it’s Scarlett Johanssen playing a character called Matoko Kusananji. Cultural appropriation is an idea that is very useful when we see someone powerful messing around with the culture of someone less powerful and we want to say, ‘that’s fucked up’. It’s also an idea I’ve got some pretty big problems with. Because when you don’t know any black men and want to (are inevitably going to) become a black man, you’re going to have to appropriate.

A truly frightening amount of who I am has come, consciously or unconsciously, from films and music. This ranges from the innocent; buying Hip Hop CDs with my pocket money and studiously checking the words I didn’t know on Urban Dictionary so I could use them myself, to the not so innocent; like the deep-founded belief in the connection between the capacity for violence and manliness that I will never be rid of. One trait I picked up that caused my friends endless amusement was my ‘black voice’.

My ‘black voice’ was how I spoke to my few black acquaintances at sixth form. It used to make my close (white) friends laugh when I switched my accent from one moment to the next. My black acquaintances didn’t laugh, even when my ‘black voice’ was (see above) pretty unconvincing. I guess they must have seen me as another black person. If I said some dumb stuff sometimes, and I did, it wasn’t dumb enough to be all that interesting.

My point is that a large part of who I am comes from me appropriating other people’s cultures. This isn’t an innocent process. The people whose lives I mined to recreate myself as someone masculine and black were overwhelmingly poorer, blacker people than myself. My cultural appropriation was as much about class as about race. With poshness and effeminacy linked in my mind, I wanted to steal a bit of macho glamour from people who really faced danger in their day to day lives. At different times in my life, I tried a pretty wide range of strategies to do this, from taking up boxing and training at an inner-city gym, to practising saying ‘motherfucker’ in the mirror until it sounded natural enough to use in casual conversation.

This is my problem with the idea of cultural appropriation …

To appropriate culture, culture has to become a thing, that can be owned. For culture to have owners there must be a core group of people who are the authentic bearers of that culture, either because they made it, or have a long term personal or family connection with it. But this vision, where an in-group of authentic culture-owners must protect their culture from outsiders who want to steal or undermine it, has always felt, to me, very close to nationalism – something else I don’t really understand.

If you don’t really fit in where you grow up, and mixed race people are the misfits par excellence, you notice the work it takes to belong anywhere. Despite my presumably equal mix of genetic material from my mum and dad, in the UK people are more likely to categorise me as black/other rather than white/same. Since childhood, I’ve travelled around East Africa quite a lot. It was pretty sobering when I got old enough to realise that there most people see me as Mizungu – white/other.

We are born into a place in society, but we are not born with identities – crying, drinking milk, and not being able to sit up does not count as an identity. Identities have to be created, borrowing bits from the people we encounter both in real life and in fiction, and then redrafting ourselves to accommodate these new bits until hopefully we create someone we can live with being.

These days I spend a lot of my spare time on (hopefully) creative writing. This has made me think a lot about the similarities between the ways in which we create ourselves and writing a story. The basic parameters are set before you begin, there will be a beginning, middle, and an end, with a central character who will (hopefully) learn something over the course of events. The creativity comes in how you fulfil this basic outline, and, to a large degree, the way you fulfil it is by stealing other people’s ideas. The skill is adjusting these ideas to your purposes and bolting them back together in a way that is hopefully too subtle for anybody to see the joins. If you’re really, really good at it, you might even create a tiny sliver of something original as you go along.

If you think I’m just saying this because I’m a hack, it’s worth remembering nearly all Shakespeare’s plays are re-writes of pre-existing stories. So even if I personally am a hack, I’m in good company here.

Gender, race, and class are identities that are often violently imposed on people from the outside, but they are also identities that we creatively improvise and project outwards. I am about the millionth person to the party to say identities are performances. For a huge number of people, especially people who, for whatever reason, struggled to fit into the local culture they grew up in, some of the elements of that performance are going to be stolen. And sometimes that can give people space to express themselves and create things which are brilliant …

Figure 2.2 Freddie Mercury. The most famous Tanzanian–Briton mix and man who borrowed ideas from everywhere and made them awesome.

And sometimes not so much …

2.2.1 Subverting Genre Expectations

As you’ve probably realised, I like genre conventions. These are the rules that make a genre what it is. The mismatched lovers might have fallen out now, but it’s a rom-com so I know they’ll get back together in the end. I watch a lot of horror. Knowing the jump scare is coming and anticipating it is as much fun as the scare itself. I brace. My girlfriend braces for my inevitable jump and yell. Everybody enjoys themselves. When I write, I make a point of knowing the conventions of the genre I’m writing. Like the structure of a sonnet for a poet, genre constraints give a useful structure to be creative within. One of my favourite things as a writer and reader is seeing familiar genre tropes realised in an unfamiliar way. Get Out starts out as a seemingly grounded horror. You know Chris’s white girlfriend’s family are up to no good. You don’t expect them to be interracial bodysnatchers. Familiar genres can also serve as a Trojan horse to smuggle subversive messages into spaces where they might otherwise not be heard. You might consider The Purge movies trashy, but across five films and counting they’ve screamed ‘eat the rich, they’re murdering parasites’ to audiences of millions. If the form of the message is familiar, audiences can be surprisingly receptive to radical content.

Subverting genre is a balancing act. The risk is that readers might mistake what you are trying to achieve completely. Think you’re writing one genre when you’re really writing another. The result can be incomprehension, or even anger. This risk became particularly clear to me when I sent my most recent play, Terror Management Theory, to theatres. The play revolves around a dinner party which spins dangerously off the rails. Of the white readers that responded, the play was uniformly critiqued as sophomore. I was sent example scripts of more ‘sophisticated’ plays, all Black-with-a-capital-B theatre that, in my view, objectified black suffering for white liberal audiences. If I’d been sent God of Carnage, or Who’s Afraid of Virginia Woolf? I would have understood. These are similar plays to mine, the veil of polite society being torn away across one nerve-wracking evening. My characters were wealthy film producers: why was I being sent plays about slaves and the ghetto? The answer, I expect, is ‘dinner party gone to hell’ is not a genre that was expected from a thirty-year-old black guy. As it was, the UK’s leading black theatre company, Talawa, had it open their residency at the Fairfield Halls after eighteen months of lockdown to a uniformly enthusiastic reception. The screened performance got me a conversation with an agent. The characters were black. The genre wasn’t. Only one company understood.

In academic writing, Hannah Reference CowanCowan (2021) has been viciously attacked by health campaigners for her critical articles about the NHS. For them, there are only two genres. ‘The NHS must be protected’ and ‘The NHS is bad and should be privatised’. In this binary world, there is no room for Hannah’s writing in the genre of ‘We can imagine a better future than what we currently have’.

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So what am I saying? What’s the takeaway? Most of all, I’m saying think about the genre you’re writing in. Know it. Study it. Are you just reproducing the expected tropes, or are you subverting them to create something new that only you could make? And what is your genre as a writer? Are you happy with that? If not, what can you do to change it?

Academic or not, writing is your craft, and you should master it. Clear writing is clear thinking. Some rules of thumb, borrowed from George Orwell, are to use normal words and punctuation unless strictly necessary. Go back and look. In this commentary I’ve only used full stops, commas, and question marks. There is also a clear three-act structure, with each act delineated by a title or subheading. As always, writing this I felt pressure not to commit the ultimate sin of being boring. You should feel this pressure too. Strive for your writing to be enjoyable as well as informative. We’re all storytellers. Whatever you’re trying to communicate, make your story a good one.

At the Edge-Lands of Mental Health Care, Whose Vulnerability Counts?

I don’t think I ever met the two homeless people who had been sleeping outside the counselling service I spent time volunteering at last year. I’d been there as part of a piece of research with mental health charities in London, which (with the mainstream system currently bursting at the seams) have become more important than ever as places for people to come to in their darkest hour.Footnote ³ But these two had come hoping to make use of the sheltered doorway of the centre, rather than the listening ear of a volunteer counsellor, and fairly quickly it was decided that this went beyond what the service had to offer.

Figure 3.1 Edge-lands

And so by the time I arrived there, all that was left of the homeless pair were a jumble of vague stories, a few traces of their existence: there was the mention from the receptionist that one of the pair had popped up in the Tesco’s car park a few streets away, astonished that she’d recognised him (‘I think he thought he was invisible!’); sometimes people talked about the ‘night revellers’ that used to leave glass bottles whose broken shards would shine in the gutters; and then there were murmurs that the mess between the breeze-blocks at the bend in the road was in fact human excrement, which apparently they used to have to get rid of with buckets of bleachy water, sluiced through the half-cobbled, half tarmacked terrain of the cul-de-sac.

Like so much of inner-city London, the neighbourhood is being bought up and developed at a rate so fast it can’t keep up with itself. Despite the soaring property prices and quick turnover of shop fronts, there remain large enclaves of deprivation and buildings that haven’t been touched for years. The 1960s block behind the service sits unused, as does the old gasholder behind the wire fencing. The cul-de-sac in which the service is based is privately owned, and so the responsibility to maintain it lies with the landlord and local residents. This probably explains the unfinished tarmac job, the abandoned cars that lined the opposite side of the street, and the sign, imploringly hand painted directly onto the red-brick house at the end: ‘No dumping!’

When the charity’s chair of trustees came in for a meeting one day a year or so ago and saw the two figures with their sleeping bags and cans scattered around them, she would have known that – without someone personally intervening – it was likely they’d still be there when next month’s meeting came around. And the next. It was unclear from the titbits of story I gathered from the longer-standing members of staff whether the fears about the homeless duo’s aggression ever actually played out (mostly people described them in general, slightly euphemistic terms such as being ‘unlovable’ and ’making a mess’), but the trustees all agreed that they needed to go.

Julie, one of the administrators, was enlisted to call the police, in the hope that they would resolve the situation. She told me about this looking out sideways from behind her computer monitor, an elbow on the desk, looking defiant. She hadn’t wanted to call the police; her conviction was ‘either you help someone with your whole heart, or you just leave them be’. But they kept asking, and she didn’t think they would have appreciated her opinion. So she kept calling, until they were gone.

Months later, I was asked to come to one of the trustee meetings to present some of my research findings about their service users’ experiences of accessing counselling. I had been interested in what it had felt like for new clients encountering the service for the first time. One of the people I spoke to – I called her Claire – had never accessed a mental health service before. She had been waiting to see a bereavement counsellor on the NHS for almost two years, which had left her feeling mistrustful of promises of free care and support. Approaching the charity for her initial assessment, her heart had sunk when she saw the rusty sign and deserted cul-de-sac. She’d had a strong sense that there could be a man in the bushes, waiting to jump out at her, and there wouldn’t be anyone around to help.

As I recounted this to the board of trustees and management of the charity, amongst tea and biscuits and home-made rock-cakes, they listened intently, their faces tired and concerned. When I finished talking, it was the imaginary man in the bushes that seemed to have captured everyone’s attention. One of the board members informed me that this wasn’t so far from the truth, that there had in fact, last year, been two men hanging around outside the service. I of course knew exactly whom she was talking about. Without going into exactly how they had managed to get them to ’move on’, the chair explained that they were no longer there to upset vulnerable clients coming to the service. She made eye contact with me as she said the word ’vulnerable’, signalling to me that Claire’s story had been taken seriously, that her vulnerability was something that they were accountable for.

It made me feel deeply uncomfortable that (read backwards at least) my research findings seemed to be justifying the forced removal of the two homeless people, and suggesting that further ‘cleansing’ of the area was necessary to protect clients like those who had participated in my study. Perhaps more uncomfortable was the truth that Claire was vulnerable and that the threat (real or imagined) of encountering strangers in this space was heightening the fears and anxieties that had brought her to the service in the first place.

But my discomfort wasn’t just about unwelcome truths. It was about the fact that the story I heard was precluding some important questions being asked. The first was about what was being made invisible through the actual removal of the two men, and the subsequent haze and ambiguity in which the story was shrouded. The threat that they actually posed was obscured by the euphemistic ways of talking about how they were putting clients off, and by the conflicting stories about how and why they were removed in the end. Oddly, amongst all of the perceived threats in this story, only one came to fruition: the threat from the trustees to forcibly reclaim the space that had at some point seemed a safe place to inhabit. Also made invisible was the men’s vulnerability. Despite the references to street drinkers or night revellers, the traces of makeshift bed and toilet suggest that this had been a site of a very precarious existence, which had of course in the end been criminalised and dismantled. Ultimately, this process of invisiblisation seemed to answer the question (before it had been asked) of whose vulnerability counts.

Mental health problems and homelessness are without doubt closely intertwined issues in inner city contexts like this,Footnote ⁴ particularly as services in both areas continue to be cut across sectors. The small charity I have been talking about hasn’t chosen to take on this particular intersection of disadvantage, and nor is it their responsibility to so. They have decided to focus on the needs of a different client group, who are also vulnerable and have needs that often aren’t met by mainstream services. But maybe a useful question to ask is whether this decision really has to be a trade-off, whereby helping some necessitates the removal of others? This could help us hold in sight multiple vulnerabilities, some of which we can address, and some of which we could simply, as Julie says, ‘leave be’.

3.2.1 Materialising Messy Politics

In asking ’whose vulnerability counts?’, I was grappling with what story to tell – the mundane account of ‘tidying up’ the threshold of the counselling service to make it more welcoming to distressed clients, or the more uncomfortable one, which acknowledged that this ‘tidying up’ involved the removal of the two homeless people. This second story was already heavily anecdotalised (Reference Micheal, Lury and WakefordMicheal, 2012) by the staff at the clinic, with my retelling of it making the whole situation increasingly untidy. Moreover, such an anecdote could never represent the normal happenings of my field sites. However, I used this particular happening to tell a story of matter out of place (Reference DouglasDouglas, 1966) and people out of place (Reference AhmedAhmed, 2000), in order to say something important about how in/exclusion is enacted in a particular landscape of care. The anecdote could be described in the words of Lauren Berlant (referencing Susan Leigh Star’s ethnographies of infrastructure) as a ‘glitch of the present’: a unique happening that serves as ‘a revelation of what had been the lived ordinary’ (Reference BerlantBerlant, 2015, p. 403). In other words, the removal of the two homeless people occurred in isolation from all the ordinary dilemmas of access and belonging, but nevertheless can be seen within a wider assemblage of comings and goings to give a different perspective on how therapeutic places are made and remade, and for whom. Reading the piece back, I see that the moral and ethical dilemma was not just about making claims about ’whose vulnerability counts?’ but how to tell the story of this question as it emerged and was being answered at different moments and from different positions in a particular place. Writing the messy telling and retelling of the anecdote was a good starting point: conjuring up multiple voices telling competing stories ‘in place’ highlighted the crucial absence of two homeless protagonists’ voices, who were by then long gone from the scene.

It was of course ‘the scene’ itself that ended up doing much of the storytelling. But this involves important choices and techniques of writing and observing: Donna Reference HarawayHaraway (2016, p. 12) articulates this need to attend to the materials (environments, actors, objects) we use to create stories and possible worlds, writing, ‘it matters which stories make worlds, what worlds make stories’. The world I was studying was one located at the doors of mental health services, with issues of access and eligibility most obviously playing out in waiting rooms, front desks, clinical assessment meetings, and so on. But when I found myself a few metres away from the front door of the clinic, standing over the famous breeze-block corner and staring down at the traces of (potentially human) ‘mess’, I was nudging up against another world: one that made a more complicated story than the one on the other side of the door to the counselling service. As ethnographers, we can sensitise ourselves to these traces of messier worlds, and in our writing of them begin to materialise different stories about the ‘often invisible side of inequality’ that this Element is all about (Del Percio and Cowan, Section 1).

Immersing the reader in details of bits of broken glass, recently cleaned-up excrement, a half-tarmacked private road, and the imploring sign of ‘no dumping!’ documented the tidying up of mess, but also of people. This came from a decision to notice people and materials beyond the obvious boundaries of the field site and led to an analysis about ‘dumping’ and ‘tidying’ in systems of care that might not otherwise have emerged. The everyday work of ‘tidying up’ that staff engaged in reflected the marginalised position of the organisation in the broader landscape of care. This, in turn, resulted in a politics of inclusion and exclusion that raised the questions I explore in the piece about ‘whose vulnerability counts?’ In this way, writing becomes a materialising practice: one that can surface questions worth asking, even when they complicate the story that you thought you were going to tell.

3.2.2 Holding Moral Tensions ‘In Place’

This materialising practice of leading with place (letting the scene tell the story) can also cause problems: messy writing makes for messy moral work. In my ethnography, I used mapping techniques with service users to invoke socio-material accounts of their first encounters with mental health care settings. This generated visual data that helped demonstrate how precarity is created in place (Reference BrenmanBrenman, 2020). In the blog piece, I describe the embodied sense of vulnerability and unfamiliarity of the woman I call Claire when she accessed the service by recounting her concern with the rusty sign and deserted cul-de-sac; material and spatial details that coloured her experience of finally being offered her course of counselling sessions after a two-year wait for therapy with the National Health Service. But I also document my discomfort at how this account took on a life of its own when I shared it with the clinical staff I’d been working with. Her lively depiction of an imagined ‘man in the bushes’ did not just prompt concern for a new client; it also justified the forced removal of the two homeless men. As a result, Claire’s vulnerability was pitted against that of the homeless people – with hers clearly winning out.

By letting these multiple stories emerge and coexist in the same place, new interpretations and possible exclusions were able to form in ways I wasn’t comfortable with. And so ‘placing’ can do the evocative work of making certain things visible but it can also undo the ethnographer’s careful moral and ethical framing of a situation. The situated framing I chose (like a still camera with people coming in and out of a scene) is a different methodological choice to following the journeys and perspectives of certain people. It points to the limits as well as the possibilities of leading with place rather than people, but it is also what politicises this materialising and messy writing practice. While writers never have complete control over their text, I propose that ‘placing’ issues in this way brings further riskiness to ethnographic writing, which can offer up more power to the reader. This includes the power to participate in the observations and make their own judgements about complex situations and the questions that arise from them (’whose vulnerability counts?’ being just one of many questions the reader might want to ask for themselves). My use of the idea of riskiness echoes Fitzgerald and Callard’s (Reference Fitzgerald, Callard, Whitehead, Woods, Atkinson, Macnaughton and Richards2016) ‘ambiguous and risky intellectual space’, but is about becoming entangled in material rather than disciplinary spaces: the risks that we (as observers and writers) run when we find ourselves entangled in situations where we might lose control of a story and its morals.

I have been arguing that ‘placing’ problems and writing through their mess is a productive means to materialise banal inequalities. This involves bringing these less visible inequalities to the surface through risky, potentially uncomfortable, writing practices. In describing ‘actual’ or material mess, we can bring forth messier worlds that complicate more obvious forms of inequalities that are described in different kinds of writing. In my work, I sought to disrupt the politically neutral narratives of ‘barriers and facilitators’ that frame problems of access to care in public health by situating these problems in very specific social and material arrangements. One way to repoliticise these problems in ethnographic writing is to tell stories as they emerge from particular (often peripheral, and therefore less visible) places, attending to the multiple accounts and the traces of absent others that come into view. This kind of writing can arrange stories in space and time so that ethical and moral tensions within them are not resolved or ‘tidied up’, but rather held ‘in place’.

Freedom, Oppression, Sacrifice: Chronicles from the Italian Lockdown (Part Two)

I want to buy a car. I want my freedom back. Freeeee! The government has announced a softening of the lockdown. People can move now within their region. The radio clarifies that social distancing still needs to be maintained, it has become part of our ‘new normality’. Wear masks, keep distance, don’t hug, stand in line, don’t gather. But moving, moving is allowed. I need a car. I want to bring the kids to the mountains. Cambiamento d’aria (change of air), people call it here. I saw an advert from Andrei, a Romanian man living in the neighbouring town who wants to sell his Renault. It is cheap, an old car, but still a strong engine, he tells me on the phone. But migrants spread the virus, people kept telling me. Are you sure you want to buy a car from a gipsy? They carry the virus.

Migrants are super-spreaders, agrees Legame, a social cooperative with which I have been collaborating since 2015. It provides services to workers which are employed by the Southern Italian agricultural industries. Romanians, Bulgarians, Ukrainians, but also Moroccans and many workers from sub-Saharan Africa. It has been operating not far from here in a little town famous for its tomato plantations. Migrants are virus spreaders, they are convinced. This is why, last month, they decided to translate the rules of social distancing, including hygiene guidelines, into as many languages as possible. So that migrants too would eventually be able to understand what to do to avoid the spreading of the virus. This concern for migrants’ infectability is part of a larger campaign aimed at empowering migrants. Along with what sociolinguists have been preaching for decades, their practice assumes that translating information from the state can help fight structures of inequality. If only people can use their first language this world would be a better one.

Figure 4.1 Freeeee! Author’s image.

We know from historians that this assumption is not new. The violent colonisation of the world through imperial power has always co-existed with the spread of civilising and modernising knowledge. Translation as a technique of persuasion allowed colonisers to localise knowledge, to adapt it to the world views and modes of living of the individuals targeted and to create consent for the occupation and dispossession of territories as well as violence and oppression. Translating hygiene and public health measures was a means of imposing knowledge about the human body that, while seemingly benevolent, positioned the colonised as subordinate and produced a racialised critique of people’s cultural practices and social relations.

I can give you a discount, clarifies Andrei. He sounds desperate. Buying a car from a Romanian? No no, not now, people insist. I meet him in his neighbourhood. Massimo, a friend of mine, gave me a lift by car. Buses have stopped running. It is my first time here. Deserts of concrete. Big, overcrowded houses. Families squeezed in small apartments. Children playing on tiny balconies. Others meeting on the building’s stairs. I think about the houses in the neighbouring town in which we live. Terraced houses. Gardens with a sea view. Eighty percent of the buildings are empty, waiting for tourists to come. Wealth and poverty exist side by side in this part of Italy. What if migrants’ major infectability is caused not by language, not by migrants’ lack of understanding of the confinement rules, but by these housing inequalities? What if it is not the virus that makes people die, but the system of inequality that we have built around us?

I see Andrei come down the stairs. He limps. He tells me later that he had almost lost his leg in a work accident in a firework factory. People here are crazy about fireworks. I instinctively tried to shake his hand. My body forgot that body contact needs to be absolutely avoided. Greetings are out in times of Covid-19. Andrei looks at me astonished. He knows the rules. No need for translation. Are you crazy, his eyes seem to say, keep your distance. I apologise. Try to say something about routines. And about how they come automatically to justify my misbehaviour. But he does not seem to listen. This is the car. It is an old vehicle. I used to drive to Romania with it. Three thousand kilometres. Three times already. The coachwork is damaged. Dents here, scratches there. But I have not used it for ages, I don’t need it anymore.

Figure 4.2 Lockdown homes. Author’s image.

I knew he was lying. Before leaving me alone with Andrei, Massimo insisted we check him. His habits. His car. You never know, explained Massimo. This is Italy. You can’t trust people. Be careful, he insisted. We should ask around before buying, he advised. We had stopped at a Romanian bakery in the block. Bought some bread. Chatted with people. The women behind the counter knew Andrei. She wore a mask. She knew the rules. No need for translations. He has three kids. Hard worker. He drinks, but we all do, added a man who was smoking a cigarette in front of the bakery. He does not make any trouble. He uses his car to drive his family. To go to work. But he does not transport any material. No concrete, no tools. The car is fine. You can take it. Massimo agreed. He is going to give you a good price. He needs the money.

Figure 4.3 New car. Author’s image.

Andrei makes a good deal. I don’t negotiate. I need the car. Freedom. His children observe the scene from their balcony. Silent.

We sit in the car and drive to Eugenio’s office to process the transfer of ownership of the vehicle. The transfer of ownership needs to be visible to the state. And the state wants you to pay taxes for this transaction. They want a slice of the cake, laughs Eugenio while explaining the procedure to me. Eugenio and Andrei seem to know each other. How is work going, Eugenio asks. Work? I thought that the country was in lockdown. Stay home they said. I assumed that construction work had stopped, factories closed. I get to know that the lockdown was not for everybody. It isn’t just doctors, nurses and other care workers working. Andrei was working too. Hidden from the vigilance of the authorities. But working. While signing forms and waiting for the printer to work, I found out that Andrei had been working as a day labourer. Sometimes painting the wooden windows of buildings that had been damaged by the sun. Sometimes on a construction site. Sometimes in the fields picking fruits and vegetables. Sometimes doing other small stuff. Somebody needs to keep labouring, Eugenio notes. We can’t all stay home.

I had heard about the government’s need for manpower in the fields to keep the provision of food going. Along with what was happening in other countries in Europe they wanted to organise charter flights to fly in workers from eastern Europe; to do the work that Italians don’t want to do. There was also the idea to legalise informal agricultural labourers. The army of illegalised, black bodies that, yesterday, large sectors of the Italian public wanted to send back ‘home’, perhaps then to be drowned in the Mediterranean Sea, now had to save the nation. The economy needs to restart, politicians kept repeating. But this was different. There was a parallel economy of labour which continued operating despite the lockdown. Invisible. With no security measures. No distancing. No protection. Are migrants super-spreaders? Or are they deliberately exposed to the risk of infection? Is language then perhaps just an excuse to avoid speaking about their exposure? Their exploitation? Their sacrifice?

Where is your mask? Eugenio laughs. Leave the office, he shouts with a smile. Can’t you read the signs at the door? Don’t you understand our language? How long have you been here Andrei? Twenty years? Can’t you read? This is a public office. You need a mask. Don’t you understand the significance of confinement? C-O-N-F-I-N-E-M-E-N-T. The language question again. Eugenio was joking of course. He had been enfacing his questions with an exaggerated sarcastic smile. As if he wanted to make fun of this assumption that people would not understand the rules. Or was he serious? Andrei had warned me about Eugenio’s humour: You never know what he means. I think he is crazy.

Screw the masks. Screw the virus, Andrei brings me back into the office. Eugenio is still trying to make the printer work. His office looks like a mix between a public office and the smoky place where my father used to play cards in Switzerland when I was a child. Piles of documents. And old computers. Posters of naked women on the walls. Bunting from Italy’s major football teams. Printers. A lot of printers. Screw the virus, he repeats. The virus is a business, Andrei adds. They want me to pay for your virus. Eugenio nodded, while reinitiating the printer. It is a business, Andrei shouts. Fuck them. Employers call us one day, and the other day they don’t. One day they pay. One day they don’t. Fuck them. Fuck them. They treat us like animals. Animals. Fuck them. Eugenio laughs. He can’t stop laughing. Is he really crazy?

How will you go to work now? Eugenio laughs at Andrei while asking me to sign a document. How will you go to work now? Andrei, we need you to work. Work. Somebody needs to work. We need to keep going. You have no car. How will you go to work? Eugenio laughs again. Andrei needed the car. The woman in the bakery was right. He needs the car. For work. To drive his children to school. To go to Romania. He can’t afford to buy flight tickets. Buses are expensive too. He needs the car.

After having signed all papers, I drive Andrei home. Drive, it is yours. He asks me to stop him next to a letting agency. I will walk, he notes. I insist on driving him home. I will walk. He opens the car door and leaves with the envelope of money in his hand. He had held the envelope during the entire process. I start to think that he needed the money to pay his rent. I can’t get rid of this idea. Does he need the money to pay his rent? Did he enter the letting agency? I don’t dare to watch in the rear-view mirror. Or is he meeting a usurer? I had read in the media that people were struggling to pay their rents. That people had started to borrow money from loan sharks to cover the loss of salaries. That people working informally had not benefited from the financial support provided by the government to those who had become unemployed because of the lockdown. The mafia has supplanted the state, a national newspaper headline stated. I was hearing about these businesses profiting from those who were struggling. Was he making enough money? Was he selling his car to compensate the loss of salary and pay his rent?

I drive home with a feeling of freedom and, at the same time, a sensation of despair. Joy and sadness, freedom and submission, wealth and poverty, hope and despair have never seemed so close to me. Next to an Italian flag I see a big poster at a balcony decorated with the colours of the rainbow. We will all get through this if we stay home and hold together, it says. What if instead of holding together, instead of practising solidarity, what will make us get through this is the suffering of others? This is not good, I think. My freedom, my ability to see the mountains seems to happen at the cost of others. I realise that inequality is not, or not only about unequal consumption, but about consumption enabled by oppression. In this moment, driving home from this transaction, I realise that I am the oppressor. I am part of a privileged section of our society that oppresses. I have no doubts our collective ability to overcome this health crises and its social and economic effects will depend on the necessity of others to sacrifice themselves. More than solidarity then what seems to me the motif of this crises is submission, servitude, and oppression. The sacrifice of others’ lives. Language is here to make us forget this: We are all in this together. The question of language and translation is here to help us avoid having to speak about sacrifice, about the violence that people like me exert on others. Language makes us avoid taking responsibility for the costs of our enjoyment.

Banal oppression. Banal inequality occurs trough banal oppression. While shutting the door of the car, I think that it is through these seemingly mundane practices, such as buying an old car, hiding oneself behind the presumed empowering nature of language and translation, that both oppression and inequality manifests itself. We are used to putting the blame on others, on the big corporations, on the capitalist conspiracy, on the state, on god, and tend to forget that inequality’s most powerful weapon is the banality of everyday practices, choices and decisions. Our seemingly mundane actions are what makes inequality and oppression stick. What makes it bearable and acceptable. What makes it normal. Within any moment, we can all be the oppressor. Here, I am the oppressor. Oppression is what makes me free.

With Love, from a Non-expendable Citizen

I never thought much about my identity as an Indian. It felt just like breathing. I have travelled to many parts of this country, fourteen states, to be exact. From the North-Eastern part of India to the South, I have witnessed its many faces. Its streets. The perfectly round golgappas (an Indian street snack). The heart-shaped red balloons. The chai waala (tea seller) who smiles at me every time I pass that mundane street. That woman with a basket of grapes and her recycled dreams. Also, those posters of politicians begging for votes in the name of God and nationalism. I have witnessed it all in my life as an Indian.

Figure 5.1 A street in Assam, India, 2019. Author’s image.

But ever since I enrolled for college six years ago, I have had to spend most of my time debating and proving how ‘Indian’ I am. Eventually, I realised that the right-wing regime and the rising communal tension in the country reduced me to my immediate identity of being a Muslim. With time, I noticed that my name mattered every time I dissented. In the middle of a casual debate at a conference, I remember a man telling me, ‘Ah, I know exactly where you come from’, as he heard my name. My name and my father’s name decided the weight of the arguments I raised. From being harassed on social media for sharing a piece of news reporting Muslims being lynched by an invisible mob that preached ‘Ahimsa’ (non-violence) to being judged in academic spaces for my opinions, it all became the new normal in my everyday life. I eventually avoided revealing my identity as a Muslim when I travelled. At any social occasion, if you are asked your name and say you are Hussain, Ahmed, or Ayesha, note the reaction of the people around. Eventually, I stopped feeling the ease of being an Indian Muslim anymore. Self-confidence and hope had begun to seem blurry in my existence.

The proposal of the Citizenship Amendment Bill (CAA) in 2019 was a blood-curdling time in my life as an Indian Muslim. I remember watching the television on the edge of my seat when the Indian government passed it as an Act. My existence as an Indian was socially questioned all the while, and now it has become a legal battle. The CAA seeks to demarcate and exclude Muslims, regularising everyone’s citizenship in the country except for the Muslims. For the first time in India’s long history of secularism, a religious test has been enacted for granting citizenship under the passed Bill. The law specifically fast-tracks asylum claims of non-Muslim irregular immigrants from the neighbouring Muslim-majority countries of Afghanistan, Bangladesh, and Pakistan. After seventy years of freedom, to be told to prove that I am an Indian is to experience a feeling akin to shame. The Bill has led to fears among the millions of Indian Muslims. There were subsequent attacks on the minority, asking them to prove their ‘Indianness’. A video from Delhi went viral in February 2020 showing five injured men lying on the street being beaten by several policemen and forced to sing the Indian national anthem. One of the men, Faizan, a twenty-three-year-old Muslim, died from his injuries two days later.

With the Bill, I witnessed family gatherings where parents advised the kids not to raise their voices, no matter what. I was told that I had no other choice if I wanted to remain safe in these mad times. I saw dire fear in the eyes of those parents as they said that. Every time I raised criticism against the brute majoritarianism, I noticed that I was losing friends with time. They raised eyebrows as I questioned the growing political polarisation in my country. Their neutrality haunted me in every political debate we had. I missed classes because I didn’t feel like facing people anymore. The alienation due to the new political reality felt so real that I isolated myself from people who could not empathise with the situation. Their decision to be unapologetically apolitical at this point is political. That decision signifies an implicit endorsement of the current dehumanisation of citizens based on religion. I grew more and more despondent.

The animosity towards Muslim people in India of course has a long history to it, which stems from British colonial rule. While there was a lack of common unity in India beforehand, the Partition of Bengal in 1905 and the creation of separate religious electorates in 1909 by the British generated new animosity, leading to the bloody partition of a Hindu India and a Muslim Pakistan which killed almost one million people. For a time, before independence in 1947, the British conquest brought about an idea of shared suffering and community resistance within India; the test of loyalty to the nation was all about the opposition to British rule. But today, India is witnessing an upsurge in Hindu nationalist politics marked by the resumption of the long legacy of bloodshed that Indian history witnessed from British colonial rule.

India is now witnessing the chauvinistic ‘patriotism’ that Samuel Johnson described as the ‘last refuge of the scoundrel’. Under the aegis of Hindutva fundamentalist groups, narratives of nationalism are intricately woven with narratives of religiously oriented mythology. The classic blend of emphasising national identity and Hindu religion has led to the country’s divisiveness, further leading to violence. The Citizenship Act has been joined by mob lynchings of Muslims, a beef ban, and gau rakshaks (cow protection vigilante groups). We are suddenly in a position where eating beef has emerged as a political act of subversion in today’s India. Today, to be an Indian is to submit to dogmas, rather than the demands of one’s conscience. As Orwell put it, we have come to a point where ‘Facts are selected or suppressed to make a case; if need be, the necessary facts are simply invented or, contrariwise, erased.’

Given the apathy of the people around me to this situation, I was relieved to see that a number of civil movements sprung up across the country with the Bill. Perhaps, this country’s conscience is not that weak, I began to hope. One among them that gained global attention was the Shaheen Bagh movement. Muslim women, many clad in burqas and scarves, from different backgrounds, the working, the old and young, huddled in one stretch of a highway in protest for over a hundred days. The women who were deemed as subjugated and oppressed came out to the streets to liberate their fellow citizens. Creativity is the most critical foundation of Shaheen Bagh’s being. The protest proved its dynamism by singing songs of resistance to translate the art of resistance to an ordinary language. Here, we have an incredible story of how a group of Muslim women and Dadis, with their children and grandchildren, in the middle of a cold December, were choosing to peacefully resist what they believed to be unconstitutional citizenship laws targeting minorities. They chanted, ‘Goli nahi phool barsao’ (‘Don’t rain bullets, rain flowers’). As the ordinary women spoke to the media and people, they unfolded their vocabulary of love against the systematic dehumanisation of the minority. With time, people from different communities joined the movement and something stirred in me. It was probably hope, hope that I can go back to a life where I don’t have to prove my existence as an Indian Muslim.

The close liaison that grew between the most educated young Indian students and the Anti-CAA movement alarmed the right-wing regime. The Shaheen Bagh movement wasn’t something that came out of nowhere. It resulted from years of brute majoritarianism, arrests of political leaders who dared to dissent, the brutal killings of civilians and children in Kashmir by the Indian force. It was about more than the lethal CAA. The ‘integration’ of Muslims was never completely achieved – even after India’s independence from the British, Muslims remained the expendable ‘other’. The community was also systematically used as an electoral tool by political parties. And Shaheen Bagh was an answer to all of it. It’s about the women who came out to the streets to save the last ounce of secular democracy that’s left in the country. And this event in the history of India will not be forgotten. The years of fear I carried on my shoulders began to feel a little lighter. I felt connected to the hundreds of women who chose to throw themselves into the streets as an act of resistance. And this connection wasn’t just about my identity as an Indian Muslim woman; it was also about the oppression and fear that was inflicted upon the community for a very long time.

Figure 5.2 Bilkis Bano (aged 82) holding the image of B. R. Ambedkar, recognised as the ‘Father of the Constitution of India’ at the Shaheen Bagh protest.

Image by Vijay Reference PandeyPandey (2020).

The Covid-19 pandemic turned out to just renew the stigma faced by the minority in the country. In March 2020, the day before the national lockdown in India, I booked a ticket and rushed to the airport to reach home as quickly as possible. My cab driver was quite impressive. He talked about how he has fixed rates for his rides, unlike the other drivers who charged as they liked. I asked him about his family. We discussed politics, education, and a lot more. After forty minutes of the drive, he opened his phone to show a forwarded video he got on WhatsApp. In the video, a white man (as far as I could make out from it) spat on a Metro train’s metal pole. After he showed me the video, he said something surprising. The driver told me that the man in the video was a Muslim and he is trying to infect the others with Covid-19. I had no idea on what ground that video was shared with that description. That’s what the forwarded message was, and the man bought it. He continued, ‘sab musalmaan log aise hi hain, ma’am’ (‘This is how all Muslims are’), filled with anger as he said that.

The lack of stereotypical markers must have made him feel that I am not a Muslim. Well, I know it because this is not the first time I have experienced bias and bigotry for the religion I belong to. This time, it felt a little different. For a very long time, I shrugged off such remarks thrown at me, as I had done since I was a young girl. It did not hit me hard – that is until my identity as an Indian was questioned. That day, I realised that I have grown up to be a different person. I did not want to run away anymore though there was so much to be afraid of. As I was about to get out of the cab, the cab driver asked me if I could tell him my name. This time, I did not hide my name. It is what it is. And I want my fellow countrymen to take me for what I am.

Today, the future of dissent and resistance is currently on thin ice with the subsequent arrests of students, activists, and civilians around the country. This also fills me with dread about the future of my country. The state must have crushed the place where the Shaheen Bagh happened by now, but the idea of Shaheen Bagh shall never fade as the movement fearlessly shouts out that ‘resistance is the women’. How these women decided to dissent has several historical precedents – in the widows of Kashmir who protested against insurgency, in the women of Manipur who carried out nude protest against rape by the army men, in the Mothers of Plaza de Mayo who campaigned for their disappeared children.

As Arundhati Reference RoyRoy (1999) puts it, in her novel, The Cost of Living, ‘To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget.’ That is precisely the lesson this movement gave me for life. As I go back to the times when I was subjected to judgements and reduced to my immediate identity as a Muslim woman in India, I realised that those experiences shaped my idea of dissent, marginalisation, justice, and empathy. My lack of privilege taught me what it feels to be politically disadvantaged in an unfair political discourse. And I would want my children to understand that an apolitical attitude is never a choice where there is injustice. Conversations around oppression, injustice, and falsehood deserve to be dealt with. Yet, you and me can be as ‘Indian’ as anybody else is.

Who Is Not on the List? Navigating White Academia

‘Your name is not on the list’, she said, ‘I can’t let you in’. She wasn’t unfriendly but made it clear that I wasn’t supposed to be there, that I should leave.

A few weeks ago I got an email from the head of my department at university asking for volunteers to invigilate the exams. Due to Covid-19, exams had to be organised differently. Instead of one auditorium with one hundred students supervised by two or three academics, the group had to be split in four and spread over four different auditoriums. Consequently, there was a need for more invigilators, and I volunteered to help.

I was assigned to a location, but when I arrived the people in front of the building responsible for registering the students and distributing facemasks said they couldn’t let me in. I said I was here with Mark Van der Steen,Footnote ⁵ that he was also an invigilator, and that he should already be inside. She took a look at her list again and said: ‘There is no Mark Van der Steen either, sorry, I think you are at the wrong location.’

I started to doubt myself, so I took my phone and checked my emails. Did I miss something? Did I forget to read a last urgent email? Or did I come on the wrong day? Was it yesterday or rather next week? I started to get stressed, scrolling through my emails and using the search function to find any mails I could have missed, went through my spam. Nothing. I couldn’t find any other emails than the communication in which I responded and confirmed that I would be there. I showed the lady my email, but she wasn’t interested. She repeated: ‘Sorry, you’re not on the list, you can’t get in.’

Figure 6.1 Exam entrance during Covid-19. Author’s image.

She had other things to do as students started to arrive. I didn’t have Mark’s phone number, so I sent him an email with my phone, telling him I was in front of the building but that they wouldn’t let me in. I withdrew myself from the entrance and started to think while standing on the sidewalk. What now? I returned to my emails, searching for my mistake but couldn’t find it, when suddenly after a few minutes Mark stood behind me and said, ‘Hi Sibo, come on in’.

I was surprised. Where did he come from so suddenly? ‘I was already in the auditorium’, he said, ‘I arrived fifteen minutes ago. I just opened my computer and saw your email’. ’But your name is not on the list’, I said, ‘How did you get in?’ He didn’t know, he didn’t even know there was a list, they just let him in, he said. I was puzzled, so I went to the lady with him and said, ‘Well this is Mark Van der Steen, my colleague with whom I will supervise the exam in auditorium A1’. She looked at her list and seemed a little confused or embarrassed, and then said to Mark, ‘So, he is with you?’, while pointing at me with her pen. Mark said yes and that was it. It was confirmed. It was all good now. I could get in.

I was perplexed. What happened? I couldn’t stop thinking: ‘But Mark is not on the list either. Why did they let him in? Why is he a trustworthy source of information for letting me in? Why does he have to confirm that I’m okay while she doesn’t know him either? Why did she let him in in the first place? Why didn’t she ask his name? He’s not on the list and is still not on the list, even after he came to fetch me.’

I didn’t say anything, but I was kind of pissed off. I didn’t show it though. I am a nice guy. I knew that being angry wouldn’t help much. But I kept on thinking about what happened. Why was I treated that way, and Mark wasn’t? Mark and I are the same age, we’re both fathers, we’re both middle class, we both have facial hair, we both speak fluent Dutch, we both have the same educational background. So, what has happened here? Is it our bodies? I’m taller and slimmer than Mark and he’s balding while I have long hair, dreadlocks actually. And yes, maybe it’s that. The dreadlocks. Maybe my father was right all along. I should cut my hair, and wear a suit and tie. Just not to scare people. Because, you see, I am black. The brown skin, mixed race type. The fashionable type. But still black. Still a threat. Mark, however, is white.

But thinking that is really problematic. I mean how could race matter here, in this progressive university? We’re in Western Europe, in a rich, clean, well-organised, liberal university town. The local mantra is that racism is relative, that if you speak the local language, all doors will open for you. Well, in this case, the door stayed closed. Even if I did speak Dutch perfectly, if that is even possible. I speak Dutch with the local accent, the local well-educated version of Dutch.

So, I keep on thinking, wouldn’t it be short-sighted of me to label this woman and her colleagues racists? Race can’t be the thing here. I just wasn’t on the list. It’s a bureaucratic matter. An administrative mistake. Moreover, we are in a predominately white town. Very few people with my appearance live here, even less work at university. And this university brands itself as a progressive institution. Can I blame this mistake on racism? I think so, but I don’t want to. To protect myself. Because if I would have dared to say there was something racist going on, that I demanded an apology for the mix up, that wouldn’t be constructive. That would have made me an angry black man. You don’t want anyone to think you’re angry and black. That’s dangerous. Moreover, I would be made responsible for the situation escalating. I would be framed as oversensitive. Another black stereotype. So why bother? Just keep silent.

I didn’t say a thing. I didn’t make a scene. I focused on my privileges. I didn’t have a cop’s knee on my neck, after all. I wasn’t going to die. I could breathe. So I didn’t ask why she didn’t refuse Mark entrance if he’s not on her list. I didn’t confront her. Who cares. It’s not my problem, it’s hers. She was just doing her job, right?

I asked Mark, though, what he thought had gone on. I was disappointed as there was no outrage on his part. He didn’t seem puzzled. We were both not on the list, because we were both replacing a professor, so he guessed that the professor’s name would be on the list and therefore not ours. I agreed, but it didn’t make sense. ‘Why did she let you in, and not me? Why did you have to confirm that I was an invigilator? What kind of power do you have that I haven’t? White power?’

I didn’t say these things, I didn’t want to make him feel bad. White power? Seriously? I kept that to myself. My past experiences told me that making white people feel uncomfortable about race is not solving problems. At least, not in the moment. I focus on the good intentions, ignore the bad effects it has on me. The insecurity, the self-doubt. I relativise. I tell myself that’s what happens when you’re one of the few black people in a white world. Of course she thinks I might be up to no good. That’s what people of colour are mediatised for. That’s our specialty. Being up to no good.

Still, what Mark said didn’t explain a thing. We were both not on the list. We were eight invigilators spread over four locations to supervise one exam for one professor. His analysis didn’t address my question. However, I’m a well-behaved law-abiding citizen, I didn’t say anything, I didn’t want to go over this again, I didn’t want to cause unease. They were all acting and talking with the best intentions, I assumed. I was being complicated. I felt insecure. I said, ‘Thank you’, to the lady and I thanked Mark, my white saviour. And I promised myself I would try to forget this episode as quickly as possible.

But I didn’t forget. The rollercoaster of news about Black Lives Matter and the effects it had worldwide made me aware that I had to tell this story. Until now, I always chose to dismiss the importance of such personal experiences. After all, most people weren’t intentionally racist. I kept my anger for the fascists, not for the nice people who had learned to assume that I could be a threat. It wasn’t their fault. It was the system. I told myself this wasn’t racism, it was ignorance. However, the pain and distress it caused made me realise that ignorance is racism.

I’ve been talking about race for decades, but always in theoretical, historical, and sociological terms. Never about myself, never about my experience. It seemed impossible, it wasn’t objective, it was anecdotal, and it was traumatising. However, through my ethnographic work I came to learn that society, history, and theory are there, in these little everyday interactions, and that if we want to talk about racism we need to look at these everyday interactions to understand how racism works. Even if my current research project is not centred around my personal experiences, it taught me clearly that racism is not a matter of bad individuals, it’s indeed a systemic problem. Racism is not this specific lady’s problem, not Mark’s problem, not my problem. It’s our problem. And if I keep silent about it, I am part of the problem. I could have made that point at the time it happened, but my point wouldn’t have landed well. I would be an angry black man and thus a public danger. I would be overreacting. This blog seemed to be one of the limited ways I had to break the silence without harming myself. Still, it’s me who has to revisit something I’d rather forget. In the moment, Mark with his power might have been able to achieve more than I could. I had to control my outrage, to protect myself. But where was his outrage? Why didn’t he call out what happened? Of course, it is not his personal responsibility, it’s not just his problem. Again, it is our problem. And as long as we don’t address it as such I’m afraid that we will never be able to change racism’s systemicity.

We Will Not Tolerate Any Form of Abuse: Reconstructing Disability Assessments and Surveillance Post-Covid

This blog was written in collaboration and conversation with a friend, who would prefer to remain anonymous.

‘We will not tolerate any form of abuse …’ I started reading the sign in the waiting room of the Centre for Health and Disability Assessments. Back before the Covid-19 lockdown I was waiting with a friend for an appointment which would determine whether she was still eligible for Employment and Support Allowance. MAXIMUS is the most recent company contracted to carry out these assessments, which determine what money people can claim to support their disability needs.

I carried on reading the sign:

‘We have a duty of care to both our customers and our staff. Most of our customers are polite and understanding. We will treat our customers with respect. We will not tolerate:

• Threats

• Verbal abuse

• Assault

• Harassment

• Racism

We will be strong in our actions, including prosecution, against anyone responsible for abuse.’

Figure 7.1 The Disability Assessment Centre.

Had the centre experienced violence before? I looked around and saw people quietly waiting in the chairs bordering the room. There was a woman with crutches waiting with what appeared to be her husband and daughter. There was a man in his twenties who smelt a little of booze and was quietly twiddling his thumbs while his social worker sat next to him reading a newspaper. And there was me and my friend waiting for her assessment on her back condition, which has taken her in and out of hospital and in need of carers in the home for years. The most violent thing to me in that room was the poster itself, acting as a forceful and permanent threat to anyone who stepped out of line. The security guard by the door and the insecurity of everyone’s position made the power dynamics quite clear.

During the Covid-19 lockdown, I have seen numerous activists and graffiti artists saying we cannot go back to ‘normal’. That we should use this sudden breakdown of social relations as a moment for radical change; to reconstruct the world we want to come back to. This is sometimes hard to contemplate when we have seen inequalities entrench themselves further with lockdown, as described in my own and Alfonso’s previous posts. But one way in which Covid-19 has brought about a decrease of surveillance is through the suspension of any disability assessments during lockdown. It is momentarily assumed that those that ask for help need it. The insecurity in that room previous to the moment of rupture in which I write this, was because everyone waiting was reliant on the assessment to justify their needs for financial help. Help to pay for food and rent when they cannot work, and to pay for carers who may need to help with getting up out of bed, or daily tasks such as the shopping and cleaning. These assessments were introduced in the UK for everyone needing disability benefits to distinguish what one national television programme called the ‘Saints and Scroungers’; to ensure no one was faking their illness to thieve financial benefits from the welfare state. Unfortunately, the only way of being a saint in that TV show was if you were living in stress and poverty by not claiming anything from the state. Everyone in that room, therefore, who were all claiming money from the state, was a suspected scrounger. Assumed guilty.

As we were waiting, two young men came rushing in, probably about twenty or twenty-one years old. They were both in surfer-style clothing and were clearly quite athletic given the panicked entrance they’d just made. Not all disabilities are visible. They hurried up to the woman on the desk, my friend said she could feel their fear. ‘So sorry we’re late, we got stuck in traffic!’ one of them managed to get the words out while catching his breath. I wasn’t surprised some people were late, given that this vital centre was hidden from view in the backstreets of a town many had to travel miles to get to (including us). Anyway, surely a disability assessment should make allowances given that anything from mental health, to learning difficulties, to physical health might impact people’s ability to manage timekeeping in the style of a productive worker.

‘What’s the name?’ the woman asked, unmoved by the situation … ‘Well, looking at this you’re ten minutes late and seeing as we’re running behind, we’re not going to be able to see you – you’re going to have to rearrange.’ ‘Ahh really?!’ they asked, still trying to catch their breath. The two guys looked at each other. No words, no retort. They walked out; shoulders slumped. Defeated. I watched as they lit up a cigarette the other side of the glass door; exasperated and powerless. My friend and I looked at each other – her appointment was half an hour ago and we were still waiting. It didn’t help that they only had one assessment room on the ground floor and no lift in the building. My friend was using me as a prop, unable to sit in the chairs provided, struggling with the pain. There’s no way these guys missed their slot. MAXIMUS are allowed to be late, but those coming to get assessed are not.

Only a few weeks ago the centre cancelled on us at the last minute. We were waiting for the car which they had arranged to take my friend to the centre. A request for transport is the only evidence they would take from the doctor involved in my friend’s care. But as the minutes ticked by, we too started to become fearful that we wouldn’t make it on time. If you’re late, or you have to rearrange your appointment more than once, you are deemed ‘non-compliant’ and your case gets penalised. Two years ago, my friend couldn’t attend, as she was bedbound, and they stopped paying her a few months later; without notice. That was another frightening and arduous time.

Back in the present, we were frantically phoning round all the offices. Going round in circles. It was a Saturday and many of the numbers we tried went straight to answer machines. Finally, a human being. The assessment was cancelled, no car was coming. They just forgot to tell us.

This might seem dramatic. But the preparation for the assessment is more than just making sure someone has booked the day off work to accompany you. It is the kind of mental preparation you need to defend the income that is paying your rent, your food, your care. My friend was hyper aware of the media reports and whistleblowers describing the ways Atos, the previous company in charge of these assessments, had been trying to catch people out. And the memories of my friend’s previous assessments weren’t encouraging.

They watch you as soon as you get out of the taxi, she told me. That’s why the walkway is there. Cars can’t go right up to the entrance. Instead there is a walkway painted in yellow on the tarmac with a perfectly proportioned stick man painted down the middle, helpfully illustrating how one should stride to the entrance. When she had to go to a tribunal previously, to defend her need for care, she found out that when she was physically struggling to be polite and not cause a fuss, to open doors and pull out chairs, this was ‘evidence’ used against her. They never asked if these actions caused her pain or if she felt able to repeat them. It is just a tick box. And worse than the surveillance, last time they caused her immediate, physical, pain. They wanted to check her reflexes by tapping her knee. They tapped the first knee and her whole leg and lower back went into spasm. She put her hand up, and asked the nurse to stop, clearly in pain. The nurse ignored her and tapped the other one anyway, sending another, this time unexpected, shock up her spine. Neither the spasms, nor the pain, were recorded in her report, and my friend was deemed fit for work. It took the stress of a tribunal to have her benefits reinstated.

The focus of this monetary benefit, as the title ‘Employment and Support Allowance’ suggests, has become one of getting people back into work. There is some work my friend could and wants to do. But the economy isn’t made for someone with the unpredictability of her condition. Where she can be bedbound for days, weeks, or months at a time, and the medication she takes can cause temporary cognitive and neurological problems. If she even went for an interview, would they understand? Fear and guilt are the oscillating constants, my friend tells me. She feels guilty that she needs the benefits and her carers, but she is fearful that if she tries to do a little work, they will stop her benefits completely. And if an employer isn’t happy with her long stretches of illness, she would have to reapply for benefits all over again. When she is lucky enough to have some good days, to venture outside of her living room, it doesn’t come without the guilt and fear. Would someone report her? She recalls overhearing someone in the pub: ‘Look at her wasting our taxpayer’s money, she doesn’t even look sick.’ She’s aware that CCTV footage from supermarkets and public spaces, as well as social media images, can get used to build a case against her. She is always, potentially, being watched.

Figure 7.2 Generic able man painted on the walkway.

You’ve got to put it on a bit, people were advising my friend beforehand. To make sure she got the support they knew she needed. But she didn’t want to do that. She wouldn’t dream of going outside without her usual attire. A dress, make-up, and some boots or sandals carefully selected from the paediatric shoe shop. She wants to be polite, strain herself to help others. She wants to keep her dignity. But after spending some time with her preparing for this assessment, I realised she didn’t need to ‘put it on’. Rather, it was a process of taking off the act; the mask she puts on in public to hide the pain, and show everyone that she’s okay. Taking off the mask is an emotional process in itself, and one which causes unacknowledged pain and duress, especially in front of strangers.

Back in the assessment centre we finally got called, our turn. The assessment nurse was stern that we were not allowed to record the meeting but assured us that she would not do anything to cause harm. The interview was fast-paced and as soon as the assessor had figured out where to place my friend, which box to tick, she moved on to the next question. There was no time for my friend to process the questions, elaborate, and make sure she gave all the information. The nurse didn’t want to see the huge folder of daily care notes we had carefully packed as evidence – she said she didn’t want to know what the carers spread on her toast every morning. We had to push for her to glance at the daily recordings of pain levels and photocopy them as evidence. As we got to the end, I could see my friend getting more nervous in anticipation of a re-run of the physical exam.

‘Oh no I don’t need to do a physical examination with you, I can tell that you’re not well. It’s just if people come in saying they’ve got a bit of a bad back.’

This decisive phrase both did and didn’t make everything feel okay.

There was of course a great relief that there was not going to be a potentially harmful physical examination. But the immediacy of that ‘benefit scrounger’ figure made it clear they were constantly on the look-out for that back that’s not quite bad enough. While they say they acknowledge people can have good and bad days, the day of the assessment has really got to be a specific kind of a day. A day that’s good enough to make it to the appointment, but one that’s bad enough for them to be convinced you need support.

When my friend finally got the letter, she found she had a reduction in financial support. She didn’t get enough points. Ironically, she ended up in hospital not long after.

I looked back up at the poster in the waiting room: We will not tolerate any form of abuse. The only form of abuse I saw was the abuse of how people with disabilities are being treated and assessed by the benefits system and the contracted assessment centres. Not only causing physical harm at times but forcing people to strip themselves of their coping mechanisms, and be denied their dignity and a good life, while living with a disability. The poster is just another form of abuse – putting the potential for violence back onto those in need of support.

When talking to my friend about the world we would want to reconstruct post-Covid, it isn’t about cancelling or getting rid of these assessments. It’s the abuse we will not tolerate. Could surveillance be done with care? We’re still stuck on this one. Where many conditions that affect people’s lives are constantly changing, and unpredictable, my friend suggests it would be comforting to know that support can be reactive to changing situations. These assessments could be about understanding needs. Not catch-you-out assessments. They could be about bringing all the different forms of expertise together – from carers, doctors, physios, surgeons, and the patient themselves. To understand where support is needed, and necessarily therefore, where it isn’t. Finding ways to help people live a comfortable and good life. One which supports people with work where this is possible and valuable to them. And one which makes people feel justified and worth the support they receive. At a time where surveillance of disease is becoming necessary to move us out of lockdown, I have to ask again: can surveillance be done with care?