Updated: 5 days ago
issue 2
fall 2026
Don't Make Me Write Anything That Could Go in a Grant Form
A seasoned XR creator confronts the illusion of “good” data from audience surveys.
Anagram 2026
Editor's Introduction
May Abdalla wanted to write about how she handled audience data that, at first blush, looked negative. Instead of reducing stigma, her project on ADHD appeared to have increased it. In this beautifully meandering essay, May explores how she came to understand and even relish in the messiness of creating social impact. Setting out to create experiences that her “mum” would understand, she relentlessly pursues the production of media experiences that truly accessible to diverse audiences.
The Graph Goes the Wrong Way
"You see, it doesn't quite look like you suggested it would, May. In fact, it's quite the opposite. So. We're all curious. What's your take on it?"
Me and the computer buzz.
Me and the hot bedroom-cum-office-cum-hiding place where I spend every waking hour.
Me with nothing to say.
Me with my cursor hovering over delete.
The first results from the impact study for Impulse¹ had arrived. For three years we had interviewed people with ADHD, worked with researchers, tested prototypes and argued endlessly about language and representation. We had made a mixed-reality experience from the testimony of people living with ADHD. Not a diagnostic manual. A work made from the ways they described the world, and the ways the world described them back.
The study followed 118 audience members, with 106 completing the one-month follow-up.² There were charts about knowledge, empathy, behaviour and stigma. Some of the graphs behaved. People retained things they had learned. Some reflected on their own experiences of ADHD or behavior within the exhibit. Some sought help or became more willing to talk about ADHD.
Then I reached the stigma measure.
The average score on the perceived-stigma measure had risen from 3.37 before the experience to 3.73 immediately afterwards. A month later it had fallen to 3.52, but that was still slightly higher than where it began.
On the page, stigma had gone up. Not down.
This was not the story I had promised. Grant applications, festival talks and impact presentations depend on a familiar narrative: immersive work increases empathy. It lets us walk in somebody else's shoes. It makes the distant intimate. The graph is supposed to slope in the right direction.
This one didn't.
For perhaps thirty seconds I wondered whether it needed to be there. I understood all the small pressures that make institutions massage a truth. Not necessarily by lying. By putting the inconvenient result in an appendix and the convenient one in eighteen-point type.
Stories are expensive. Once a story has paid for three years of work, you become rather attached to it.
The study team did not let the number disappear. Their interpretation was more interesting than failure and less comforting than success. The increase might mean that people had become better at recognising stigma as a social fact—including assumptions they had previously treated as ordinary or reasonable. The later fall might reflect what happened after they had time to sit with that recognition.
Might.
To say confidently that people had become more aware rather than more prejudiced would require the words around the numbers: interviews, open responses, the things people remembered and the conversations they had afterwards. The finding was not a triumph hiding inside a failure. It was a question the graph had made impossible to avoid.
I had wanted the independent study because as the CEO of a small studio evidence is useful. Evidence unlocks the next healthcare conversation, the next commission, the next year of salaries. But I had also wanted the evidence to tell me that the work was good.
That was a different request.
The graph wanted a verdict: success or failure. I had spent years learning to make people, stories and artworks legible to institutions. I was less used to asking what that legibility cost.
Daffodils Under The Spaghetti Junction
I do not remember deciding that I wanted to be an artist. I am still not sure I do.
What I remember is discovering, during high school, that the word art could be used as a permission slip.
Erm, What are you lot doing here?
It is for our GCSE* art project, Miss
We all used it - even my friends who hadn’t taken art as a class. A sketchbook operated like a minor official document. It did not grant actual authority, but it allowed to you walk into places where you had no functional reason to be.
One night, it took me to a roundabout beneath Birmingham’s Spaghetti Junction to plant daffodils. The roundabout wasn’t a place. It was a leftover shape made by roads. Above it, Britain’s second city crossed over itself in layers of concrete. Cars followed routes decided elsewhere.
I liked the idea that the flowers might come up later without anyone knowing why. There was no plaque, no explanatory text and no evaluation form asking whether the daffodils had increased wellbeing among users of the roundabout.
Art was permission to trespass. The places weren’t forbidden but they were not places my being there had been imagined. They were service spaces, institutional spaces, patches of land with no entrance because nobody was supposed to want to enter them.
Nothing said you cannot come in.
Everything said: why would you want to be here?
Later, journalism offered the same privilege in a more official form. A camera, a microphone or a BBC email address could carry you across another kind of threshold. But journalism required the justification of a public interest story.
Art had been less demanding. It allowed me to enter because I wanted to see. To stop on the bit everyone else moved around. Eventually art itself became another structure. A qualification, a profession, an industry, a funding category, a building with an appropriate way to behave inside it.
The thing that had once allowed me to enter forbidden places became another place whose threshold people could feel they were not entitled to cross.
A place not for people like me.
The We That Need This
Anagram’s first residency was to make Door Into the Dark at the Pervasive Media Studio in Bristol. It was a blindfolded experience about being lost. Listening to people talking about moments their lives had changed beyond recognition. Whilst doing the experience you too would become lost and learn what it means to find your way back to yourself. The studio’s director led the interview.
“But what kind of people is this really for?” She had asked bullishly implying a niche audience of hipsters hot on the heels of the hype of immersive experiences. Caught off guard by her directness the words tumbled out of my mouth.
“I guess the truth is really this for my mum."
My mum was an immigrant widow in her sixties. She took meticulous care of her presentation, her ironed, carefully pinned hijab, her pristine lawn and clipped hedge of her garden, but there was a beating, aching kernel of doubt about her own belonging in England, even thirty years on. Once, standing outside the Marks & Spencer, the upscale UK supermarket, I beckoned her in so we could pick up some plastic forks for lunch.
"I can’t go in there," she said. "It's not for people like me."
I heard the sentence again when I suggested a spa for her birthday. I heard versions of it around theatres, concert halls and other buildings that thought their problem was the audience refusing to come to them.
She would probably be called a "hard-to-reach audience" in the engagement strategy of a cultural organization. But what makes her hard to reach rather depends on where you are starting from. She was not hiding. She was standing outside Marks & Spencer, explaining herself perfectly clearly.
I imagined Door Into the Dark as a door on an ordinary street, near somewhere you already lived. It might have appeared almost overnight. Beside it would be a person who turned towards you and said: Ah, Mrs. Abdalla. We're expecting you.
You need to sit down? Here is a chair.
You have a bag? Let me take it.
It's cold? Here is a blanket.
Not hospitality as an engagement strategy. Just the same instinct you would follow with a guest at your house.
The appeal of this emerging form was this. Its directness. Its intimacy. The possibility that an experience could begin with a person exactly where they were and stay close to them so as not to lose them. The technology could help, but it could not do this without human touch. Onboarding was not information you supplied before the work to make sure the audience got it.. It was whether, before the work had even begun, somebody made it clear that you were not an interruption to it.
You were the person the work was expecting.
Ramps, captions, and price points are not metaphors. They are also concrete conditions of access and they matter. But even when every one of them is present, a person may still stand at the threshold and know that nobody had them in mind.
Access is the condition. Relevance is the relationship.
Somewhere along the way, I spent so long listening to a certain kind of person talk about underrepresented groups that I forgot they were talking about my own family. I nodded through reports about barriers to entry and the democratising power of digital technology. I contributed, often unpaid, to strategies for reaching people who appeared to live in a distant settlement just beyond the cultural map.
Where were these underrepresented groups? Cornwall? Liverpool? Some factory we had not visited yet?
Then I remembered my mother.
Every funding application contains a little cast of characters. There is a we and there is a they.
We will reach them.
We will engage them.
We will educate them.
We will empower them.
The grammar has already decided who possesses and who lacks, who delivers and who receives. The access illusion is not only the old promise that immersive technology would dissolve distance and make culture democratic. It is the quieter belief that there is a "we" who make culture and a "they" who need it brought to them.
The illusion was convincing enough that, for a while, I could no longer recognize which side of the sentence I was on.
What a Treat I Was
For a while, I worked in journalism. Or rather I worked for it.
At the BBC, I began to hear the phrase positive discrimination in my head even when nobody said it aloud. I could see it in the almost crippling delight of some of the people hiring me. They had found somebody who could make calls, locate contributors and conduct interviews, and who also fulfilled some overt or implicit requirement to employ more people of my kind.
What a treat I was.
The treat became more useful when I was sent undercover into Muslim schools or asked to drive around Luton looking for traces of the men involved in the London bombings. I had entered television through a Channel 4 training scheme intended to bring people from underrepresented backgrounds into the industry. Halfway through the year, somebody discovered that, rather than learning to produce the next Big Brother, I had been quietly absorbed into an investigations department. The scheme was paying my salary. There were words to be had. I had become a little too useful to the production company and not useful enough to the official purpose of my placement.
My first encounter with the BBC had happened a few years earlier, in the run-up to the Iraq War. Radio 1, the BBC’s youth radio station, was assembling a group of young people to interview the then Prime Minister Tony Blair. During the rehearsal the producer began assigning us to our concerns.
"Kylesha, I hear you've got a question about housing benefits."
Eventually he reached me.
"May, what's your question?"
"I have a question about the funding of NHS services." I replied
A quick series of glances between the producers.
"Could you come up with a different question? It would be great if you could think of something about the war in Iraq."
I muttered something anodyne about invasion, democracy and consent. There were more glances.
My late father had succeeded in scrambling the signal. He chose the name May because although it's a common Arabic name it's also a staple in England for grannies or great-aunts. He went a step further and sent me to elocution lessons so that I would not have a Brummie accent. A tell of class origins in the UK. The plummy Home Counties voice that emerged had befuddled the room.
"What's your full name?"
"May Abdalla."
Relief.
The line they gave me began: "My name is May Abdalla. As a British Muslim, I have a burning question about Iraq…"
Kylesha had not been asked for her surname. Nor were British Muslims the only people troubled by the invasion. An enormous number of people had marched against it. But there it was: a room of young people arranged into the forms of public concern we were best equipped to represent.
I benefited from it. When the interview ended, I immediately asked for an internship.
We put it in a box.
The diagnosis. The audience. The journalist. The concern she was authorized to have.
A few years later, a controller at the BBC announced a season about poverty. The instruction travelled down through White City until it reached our current-affairs department as a production task - we needed to find "the poorest kid in England".
The phrase had the briskness of a television idea. By then I had learned the danger of sounding worthy, but I suggested that the child might be newly arrived in Britain. We could follow a child learning English faster than the rest of the family and suddenly carrying the paperwork, translation and bureaucracy of adult life. Like I had.
The producer dismissed it.
"Our audience wouldn't go for that."
I was still a researcher, near the bottom of the hierarchy. I wore long skirts and a hijab. There was an unspoken sense that I was safest behind the desk, although I was desperate to go out and shoot. I did not pitch ideas like that again.
Later, when I made my first film about a Muslim punk tour in America, I drove through Detroit with the steering wheel wedged between my knees so I could film out of the passenger window. Appearances can be deceptive.
Television had a settled syntax. It knew which person could carry a story, which suffering could survive the commissioning chain. It even imagined the family at home watching it at six, seven or nine pm. The adverts long enough to fish a slice of toast out the toaster, the repetitive voiceover a medium to deliver information lost in the throng of kids' tantrums, ironing and whatever else.
The BBC’s voice of authority was one that was aloof and vague. No accent of personal investment. No visible stakes.
I learned to do it.
Taming the Terrain
The first medium I heard closing around itself was documentary.
When I began, working in documentaries felt like a way of following reality wherever it went. The camera gave you a reason to enter a room. Journalism gave you permission to ask the question. The material arrived through the accidents of other people's lives, and your job was to watch, wide-eyed, as the story told you what it was.
Soon I could hear the grammar before the story.
I would know which commissioners needed to approve it, which production companies could get it made and where each revelation should sit. Hard-hitting, but not so hard that the viewer changed the channel.
This did not make documentaries easy to make but the system was clear.
I began to wonder whether the hard-hitting documentary had itself become a consumer product. Somewhere, an educated viewer might sit down on a Thursday night and think: I fancy something serious. Not Tuesday-night serious, but something to get informed, concerned and morally awake before bed.
The person in the documentary might have had their life torn open but the programme had a function in the viewer's life. It sat beside the books they read, the food they bought and the political identity they imagined themselves to possess. Television became very good at placing both subjects and viewers into recognizable categories.
Immersive work offered another wilderness. A project might involve a phone, a blindfold, a game engine, a performer, GPS, headphones, projection, a room or a walk through a city. Each one had to invent not only its form but its etiquette. Where did the audience stand? How did they know when it had begun? Were they a player, a witness, a character, or simply themselves?
The rules had not yet hardened. We could ask what presence, attention, physical space and uncertainty might do. We could dismantle some of television's syntax. We could make the viewer notice the act of looking.
That uncertainty was freeing. It was also an administrative nightmare.
A funder needed to know what they were paying for. A venue needed to know how much space it occupied. A producer needed to know how many people could experience it in an hour. An insurer needed to know whether somebody might trip over a cable. An audience member needed some idea of what they were buying a ticket for. A distributor needed to know whether the piece could fit in a van, survive a flight and be installed by people who had not made it.
The absence of a category meant explaining everything from the beginning. That was part of the pleasure, but it was expensive. Freedom does not automatically produce a touring model.
The first time you make something, you are discovering what it is. By the tenth, its description is fixed and clear enough for the communications team to sell it and the audiences to buy it.
Distribution is part of access.
But distribution also requires the work to become legible.
At a recent presentation about how immersive work might reach a wider public, I watched a perfectly reasonable attempt to solve this. Technical descriptions were not helpful. Most people do not decide what to do on a Saturday night because they are excited by a projection system or a particular headset. So the work could be organized by the feeling it promised.
Did you want something awe-inspiring?
Or something trippy?
I understood the logic immediately. "A headset experience" tells an audience almost nothing. "Awe" gives them an emotional purchase. It helps a venue assemble a programme. It helps a ticket buyer decide. It gives the unfamiliar thing a shelf.
At the same time, I could feel the medium flattening as it became easier to describe.
The words can do useful work. They also travel backwards into the making. Once a category becomes fundable, marketable or popular, it starts to behave like a brief. The question shifts from "What might happen here?" to "Does this successfully deliver awe?"
The unfamiliar becomes purchasable because its outcome has been made familiar.
We put it in a box.
Sometimes the box is literal. The work needs road cases with dimensions that fit through a loading door. The box is how it travels.
The disruption may have been the reason for making it. But inside the box the work learns to behave.
Eventually we stop asking what the work unsettles and concentrate on whether the unsettling has been delivered correctly.
I cannot pretend as I write this that I stand outside the process.
My small studio has survived because I became good at translating strange ideas into institutional language. I listened to what each layer of a commissioning system required and provided it. I could mirror the language of the room, reassure the funder, describe the public value, build the partnership and still try to smuggle something less obedient inside.
Just as I’d been taught to.
BBC accent. Grant language. Impact metrics. CEO voice.
But which was the reflection and which was the real person.
The Work Changes the Worker
The part that disappears most easily from an impact form is what the work does to the person making it.
There is winning, and there is doing so much to win that the person you were winning it for is no longer around to do anything with it. Or you are no longer the person who set out to win.
The first material a tool acts upon is the worker. Whilst working in news, I became chronically impatient. A close friend took a job as a nursery teacher. Her slow, singsong diction she used at work to give even the most banal sentence the possibility of being wonderful became the voice she used all the time. We could no longer be in the same room and our friendship dissipated. You are what you do, although I wonder if the person who said it meant that your job could alter the speed at which another human voice became intolerable.
But this is the long form—you can see it in the scroll bar. Boy is it small and moving slowly to the end. But here we have time to stay with the trouble and refuse a tidy ending. Thinking is inefficient. It may leave us in a pickle and produce nothing that can be repackaged as three lessons for LinkedIn. So here I am thirty paragraphs in working it out with you, my imagined reader. Real enough to give me someone to write to - this unsolicited thing - this exercise in sitting down for something other than an application, delivery copy, completing a form. Not for pitches or promises but getting into the onion skin of what we say and do. And here deep enough to have lost the ones who skim read, in the darkness before a bright conclusion might demand, I can say I need to be asked different questions to be able to be the person this work needs. I need to be worked on.
Making Impulse changed the language in my head. Listening to hundreds of hours of interviews about ADHD, edit after edit, the words seeped into my skin. Now, when a fragment from the work is spoken in an ordinary room, my brain plays the rest of the phrase like a song. Language became music.
Somewhere during the making of Impulse, I was no longer quite sure which one of us the work was for.
The same thing happened with Goliath: Playing with Reality, our VR work about one man's experiences of psychosis, institutional care and the online gaming community in which he rebuilt a life. It won the Grand Jury Prize at Venice. That was wonderful. But I was more interested when educators began testing how it might live outside festivals, in healthcare education.
In that new context it was not an "artistic asset" or a "social impact case study". It met people whose contact with psychosis was not theoretical, and their context changed what the work was being asked to do.
Outside the cultural circuit, the work had the chance to become slightly feral again.
This is not the clean version of impact in which the artist owns insight and administers it to an audience like medicine from a spoon. The person making the work is already inside the experiment. The interviews, the technology, the funding system, the people represented and the people watching all act on one another. Nobody leaves with precisely the thing they were assigned at the beginning.
The Graph, Again
The graph is still there.
The one where after doing an experience showing the impact of ADHD on a person’s life - a condition first clinically described in 1902 by Sir George Frederic Still as a “defect of moral control, and whose chemical reality and cultural acceptability continues to push its bearers into marginalization - the audience emerged with more stigma towards the condition than when they entered.
I looked closer at the questions, all drawn from previous stigma studies. Did they talk about a rise in the appreciation of general stigma or personal bias? They included things like “4.1. People with ADHD lose their jobs when their employers find out.* And 4.5. Some people act as though it is the person’s fault that they have ADHD.* Well yes, you would be more aware of the connection between ADHD and being fired and the shame felt by many who felt like they were using ADHD as an ‘excuse’ after experiencing the stories in Impulse. Omar recounts how he felt rare periods of calm and focus during hair-raising robberies teetering on narrow ledges carrying large computer equipment. Tara, in always feeling she was too much for other people, spiraled into long periods of self-harm and a series of suicide attempts. Errol wrestles with the compulsivity of his destructive tendencies. And Leanne confesses that she feels like she’s the only one who really matters.
Probably that increase in stigma was inevitable, even necessary on the journey between awareness and change. There couldn’t be a happy ending that emerged as the user removed a headset. The happy ending might be a series of things - one triggering the next - never completely orchestrated by the experience - but growing out of the discomfort and uncertainty of dismantling one reality, and being in a space before another is formed and solid.
It’s here that the perhaps niche area of stigma and ADHD extends beyond the confines of its subject. If you’re interested in impact and change then it's a damn good case study. Why? 1) The communities affected are subsections of all communities across race, class and culture 2) It's likely that most people will know someone affected - whether themselves or a their partner, a friend or student. 3) The way people can make things easier for one another is not an abstract idea. Impact here is not committing to join a campaign about the end of nuclear arms or single-use plastics. Your opportunity to act differently will likely arise frequently if not daily - can you forgive a harsh interaction, a missed deadline, a tantrum. And building on that can you support with understanding and acceptance. And building on that can you help with processes and rituals that rewrite a pattern.
The graph launched a new curiosity in me. There is a persuasive possibility: that impact may begin as a crisis. Somebody becomes newly conscious of a contradiction and in it there is the rub. The reality of what change demands is clear, and unwelcome. A study designed to recognize only immediate positive movement may record that disturbance as failure without following the inner movements it causes in whichever direction they happen.
The graph tells me that discomfort is important. And so where can I look for it next? How can I find a place I’m not invited and overstay my welcome? Who never wants to talk to me about their experience of my work? Who doesn’t come up to shake my hand after the Q&A? One industry peer after a screening and my chasing for several weeks for a review finally conceded to telling me how much he disliked the stories. It had coincided with his own son’s diagnosis and he felt that the project set him up as someone given a life sentence.
The graph is making me ask new questions about social and cultural change and how it happens. It’s making me ask about the value of making things that don’t succeed many, many times over to warm the terrain, to prepare the earth. To understand that the people who fight the hardest against something are the ones most invested. I want to distinguish intention from action, and action from the conditions that made action possible. I want participants to tell us what counted as change rather than only confirming the outcomes we wrote into the plan. I want enough time for the work to become useful, useless, misunderstood, rejected, remembered badly or used for a purpose we did not foresee.
This is less satisfying than declaring an empathy increase. It is harder to put in a headline. It may also be closer to what culture actually does.
A new grant form will not fix this. Forms are only the paper version of a habit: deciding in advance who we are, who they are and what change is allowed to look like.
Perhaps the useful discipline is simply to keep the box visible. To remember that the category is an instrument we built around the work, not the work's natural shape. To notice what disappears each time the explanation becomes cleaner. To ask who has been made legible, to whom, and at what cost.
I still want to get the work out of the door.
I just do not want to forget that, at the beginning, we did not know exactly what was on the other side of it.
Or who.
And importantly I also need not to mind when the graph goes the wrong way.
What I want to turn away from, when I can settle into the rub, will be the thing that changes me also.
This time, I leave it in.
Endnotes
[1] "Impulse: Playing With Reality" (2024) is a 35-minute mixed reality interactive documentary exploring the embodied experience of the extreme side of Attention Deficit Hyperactivity Disorder (ADHD). It was directed by May Abdalla and Barry Gene Murphy, produced by Anagram and co-produced by Floreal and France Televisions. It was supported by Meta, Unity for Humanity, CNC, and the City of Paris.
[2] The research study for Impulse was designed and led by Dr. Alexandra Sierra (Lead Researcher & Data Scientist), with academic supervision from Dr. Sandra Gaudenzi, project coordination by John Hunter, and data compilation by Alice Freedman and Chris Constantinou.
The research methodology applied is rigorous, precise, and methodologically sound, adhering to established academic standards for quantitative longitudinal research. The study evaluated the impact of Impulse across 118 initial participants (and 106 in the 1-month follow-up) categorized into three distinct groups based on prior familiarity: Group (lived experience with ADHD, n=54), Group 2 (close indirect connection, n=42), and Group 3 (no prior personal/professional connection to ADHD, n=22).
May Abdalla
May Abdalla is a highly acclaimed director and artist known for using physical experience, technology and storytelling in ground-breaking ways. Her work brings poetic insight and meaningful interactivity to important contemporary issues with the aim of deepening our understanding of ourselves and the world around us. After graduating with honors in Social and Political Science from Cambridge University, she directed a number of character-led documentary films internationally which were screened by the BBC, Channel 4 and Al Jazeera and also selected for Semaine De Le Critique at Cannes.
She co-founded Anagram, a multi-award winning studio to explore the use of immersive technology in non-fiction storytelling. Their work spans many forms ranging from a blindfolded experience about being lost that took place in a 6000 sq ft sensory set (Door Into The Dark, Winner of Tribeca Film Festival Storyscapes Award 2015) to an augmented reality journey through a park leading you to uncover the intelligence of plants and the limitations of humans (Messages to A Post Human Earth, International Documentary Festival of Amsterdam, Immersive Non-Fiction, 2021).
Her work has been presented at the Mostra Internazionale d’Arte Cinematografica di Venezia on four occasions (Nominated for Venice Immersive 2024, Best Interactive 2021 and 2018, and Best of VR 2019). She was awarded the Grand Jury Award for Best VR in 2021, and the Venice Immersive Achievement Prize in 2024, as co-director along with Barry Gene Murphy for the Playing with Reality collection.
Affiliation: Anagram