The boy has stopped growing, and his brain is shrivelling like a fruit left out too long. No doctor in the world can explain why. He is sitting on a rubber mat with a finger in his mouth. His eyes are large, fish-like, with crusted mucus in the corners. The boy’s leg is corpse-yellow, otherwise his body is pale and anaemic. He has a crooked back and hobbled feet. The index fingers on this child's hands look like they’ve been crudely transplanted from a ninety year-old. He has a protruding jaw and his tongue, which licks round his mouth at regular intervals, is abnormally large compared to the rest of the face. Synne Hol sits on a low bench five metres away and observes. She wears a thin, light-blue ‘July’ blouse, denim jeans, and a keychain with eight keys dangling from her belt. But despite being lightly dressed, the heat causes her to sweat under her greying hair; one drop tickles behind her ear, she scratches it away as discreetly as possible to avoid the boy’s attention being led out of the situation. On her feet she wears ergonomic shoes decorated with ladybirds, and on her knees rests a folder of papers on which she occasionally makes notes. She will initially recommend additional physiotherapy, believing that action should be taken as soon as possible, so that the boy does not get even more hunched over than he already is. ‘When one has become hunched, then the damage has already been done’, she could hear herself say. ‘Bones do not have the same flexibility as muscles, it takes a lot to correct them. It’s important to act based on preventative considerations, as precautionary agents’. She settles down on the floor and begins to move slowly towards the boy.
She reaches out a hand, wanting to touch the skin poking out between the boy’s trousers and socks, but he pulls his leg away. ‘Hi’, she says. No reaction. ‘My name is Synne’, she says. Viewed from the side, the boy’s head looks like an American football. She can see that he bites his nails down to the flesh and that he has many bruises on his arms, as though someone has gripped him hard. He induces a gag reflex by forcing several fingers into his mouth at once. During the intake meeting earlier that day, the mother had asked what the reason for this could be ‘Is he hungry? Is he thirsty?’ She couldn’t bear this inability to read her own child, something as normal for parents of children with PMLD (Profound and multiple learning difficulties) as it is for those with healthy ones, all parents need this feeling of being ‘connected’ to their child. ‘It’s important to find a language’, said Synne. ‘A common platform to navigate from. And it may happen quickly, but it can also take a long time’. The mother nodded. She’d heard this many times before, but Synne felt that it should be repeated. Synne repeated these same sentences year after year, only with small variations, so that she could launch them as new and fresh. In this shadow play, Synne had to be considered the master.
The mother, in collaboration with a local special educational needs (SEN) teacher, had established various methods for reading and defining the boy’s behaviour, for example, recognising the signs for when he was hungry or needing to use the toilet. But the mother had suddenly become unsure of how capable this special educational needs teacher really was — she appeared so hesitant in the boy’s presence, the mother felt, as if she was actually afraid of him or worse; it seemed like the teacher found her son almost a bit hideous. Which is why the mother had contacted the National Association for Undiagnosed Disabilities, and they had provided a name and the name was hers. Synne had to be considered, in many ways, the last resort of the system. She was appointed within the system to help those who could not find a ‘language’ elsewhere. She was appointed to ‘re-launch’ the dignity of these born-by-mistake children, through language, and give them a place in society. She had travelled around and spoken at health conferences over the last thirty years, she’d lectured for members of parliament, and throughout the eighties she had been a spokesperson for the Association for Undiagnosed Disabilities. But for her it was important not to lose contact with the people for whom it really mattered — the families, parents, siblings and grandparents, all searching for a language in which to distribute their kindness — and that is why Synne was still employed at the centre, that’s why she was still focussed on this primary task, sitting on the floor in a room with a child, cast into a life without a manual, as she’d once started calling it, an expression that was often cited. But she had, and this she kept quiet about, struggled more each day to see the human behind the bewildered eyes, hear any language within the mumbling. She saw no difference between a deliberate act and an involuntary one. She viewed this as a naive quality crucial to understanding these people, and one which she was now lacking. It was this that could make an animal open up to a client, make it sing, get it to demonstrate empathy and engagement in ways even the parents had not seen, if only by the power of the animal’s selfless presence. Earlier in the day, one of the trainees, a sturdily built girl in grey jogging bottoms, lifted the boy into the harness. She had correctly attached the straps to the suit the boy wore and raised his body from a sitting to a standing position. The trainee had then filled a bucket of lukewarm water, added plastic balls to it and then placed the bucket on the floor under the boy’s legs, aiming to stimulate foot movement. But while hanging there, he did not start to move his legs, showed no sign of pleasure as almost all the wheelchair-bound children did when they suddenly expanded their physiological playroom. Instead, he began to yell and kick, and not because he wanted to play with the balls, but as though he wanted to spill the bathwater and thus sabotage the whole procedure. He suddenly resembled an insect, thought Synne, stuck in a spider’s web desperately trying to tear himself free before the host notices the vibrations. And the trainee didn’t know how to react, thought she had done everything right, could not understand the reaction, but Synne managed to calm her down, told her it would be ok, that one had to simply keep calm and maintain a distance. And Synne held the boy’s hands and stared into his scarlet-red face, twisted up in pain, while the trainee shakily unhooked the safety clips. In hindsight, Synne realised that the procedure had been too calculated, too joyless. She’d not even registered the trainee’s name, and their stranger-ness had an smell, and this smell was something the boy had noticed the stench of, and who manages to display happiness by surrendering their body to two strange women?
‘So you felt it was a little wrong earlier today in the harness?’ she asks. The boy rocks back and forth. ‘Hi’, she says. ‘Hi there’. She sits on her behind and tries once more to move closer to the boy, but he just slides himself further away. Don’t you want to get to know me?’ He begins to self-stimulate by waving his fingers in front of his eyes. At that moment the door opens and she can see the mother. No, no, no, thinks Synne and signals with her hands that they’re not done. The mother quickly closes the door. But the boy has already seen her and begins to yell. ‘Yes, that was your mother’, says Synne. ‘But now we are here, right? Me and you’. He leans forward and starts to crawl, or more accurately wriggle towards the door, but Synne grabs him by the back of his leg and holds him tight. ‘No’, she says, ‘sit where you are!’ And the boy has no choice, the difference in strength is too great, so he falls back. ‘There’, says Synne. ‘There’s a good boy’. And after a short while they return to silence. Synne looks at her watch, there’s a fat spot on the glass which she scrapes off with her thumbnail. Through the window, she sees another family meeting with the primary contact they’ve been given. A girl sits on a swing and is pushed back and forth between her parents. A sibling places marking cones on the ‘moon-buggy’ racetrack. The boy reaches out for the ball in front of him and lifts it to his mouth. ‘Good’, says Synne. ‘do you like the ball?’ She watches him poke out his tongue to lick it and makes a note of it on her sheet, but then he throws the ball away, seemingly disinterested in where he is in relation to everything. She looks at her watch.
‘It’s important that he learns to relate to other people’, Synne had said to the mother. ‘It’s easy for parents to become overprotective. You must dare to give up some of the responsibility. It’s hard enough already without punishing yourself further with a guilty conscience’. When she’d said that, the mother had started crying, the familiar crying often heard coming from Synne’s office, as a reminder of the human dimension hovering over the ring-binders, the stacks of documents and the scribbled drawings. She’d said ‘Feelings are no negative thing, you’re allowed to cry, you’re allowed to feel despair about the challenges you’ve had in your lives. But you must not be in despair too long, you have to raise your eyes and look outwards and see that there is a horizon beyond, and not a wall’. Synne had her strategies, her cheat sheets and her banana pastilles, her sentences and her healing hands. In this way she could manage to turn the focus back onto the case and, once again, dive back into the monotony of this serious conversation. ‘Are you ok now? Then let us continue’.
The mother and the boy lived in a small two-roomed apartment. They had to sell the house in order to afford all the equipment the boy needed to live as normal a life as possible. Her husband, the boy’s father had walked out on them, unable to cope with the sudden transition from carefree childlessness to being the father of a disabled child. He now lived somewhere in southern Sweden together with a nineteen-year-old tennis player. ‘I’ve sacrificed so much’, said the mother during the interview. ‘And my son is still a stranger to me’. Family tragedies, Synne knew, had such a huge impact because the families were pressured from every possible angle. On the one hand, they had to provide continuous care for their offspring, had to apply for relief housing and a home help, and on the other hand they had to deal with the more sensory aspects of having a disabled child; vomiting, irregular stools and the sickening smell of certain medicines that wafted out from the pill dispensers. ‘I hate the medicine and the pill dispensers, and I just break at the sight of a spoon of strawberry jam’, the mother had said. But the worst was perhaps the insomnia. The mother said that her son rarely slept more than four hours a night, that she was being driven mad by it, sitting awake surrounded by dark windows and looking down at him on the floor not showing any form of initiative other than rocking, retching, squirming around, tearing stuff down.
Synne notices how the boy looks at her now and then, as if he’s curious about what creature sits before him. ‘Are you looking at me?’ says Synne. ‘Yes, just have a good look. I’m looking at you and you’re looking at me’. He looks like an exotic monkey, she thinks, that’s been seized at a border crossing and is just waiting to be put down. But he has such beautiful blue-green eyes. ‘You’ve got such nice eyes’, says Synne. ‘Can I come closer to you now?’ She slides slowly towards him and this time he does not move, just mumbles, ‘mmm, mmm, mmm’, while chewing his tongue. Synne holds out her hand again and this time he doesn’t pull away, but lets her stroke his hair. ‘Good. Good boy’.
The first observation period ends when the mother appears once again at the door. Synne smiles and says it’s fine to come in, she turns and switches off the camera, ‘We’re done’. The boy starts to wail and throws his arms into the air. Seemingly happy to see her again. The mother seems more patient and calm now compared to when she arrived earlier in the day, apparently pleased to have an adult to share the responsibility with. ‘Did it go well then?’ asks the mother. ‘Of course, he’s a very nice boy’. ‘Well I know that’, says the mother smiling at her son. Together they lift him into the wheelchair. The seat has salt stains and smells faintly of urine. When you’re parents to someone who’s disabled, that’s something you just have to get used to, pure and simple, you can not deal with everything, thought Synne. In the whole scheme of things a drop of pee on a cushion is nothing, but on such questions of dignity, the differences between the resourceful and the unresourceful parents become clearer too. The boy’s mother had to be deemed unresourceful, Synne had already made a note of this, because the mother was alone with the boy, had chosen to cut her hours at the nursing home where she worked year after year, had become despondent, and displayed abrupt body language so indicative of people about to give up. She had long realised that she couldn’t bath her boy every day and that she in fact struggled to keep her own body clean and the house hygienic. These resource allocation problems were also observed by Synne during the welcome meeting where all the parents had been gathered for the first time. The unresourceful parents had dressed their children in stained clothes, and had hastily repaired their wheelchairs with tape and glue, and she’d also seen a father with a toilet roll in his lap which he, at regular intervals, tore a sheet from, and used it to wipe his drooling child around the mouth. Was there any dignity in it? The resourceful parents wore clean, often white, clothes, made bullet-pointed notes of what was being said on the supplied notepads, often addressed their children, translating the things that were being said, because they knew of course how important it was to be clear and that this information should not go over the children’s heads. You never knew what these youngsters grasped or what they didn’t. The resourceful could also show signs of weakness, but it was more hidden. For example, a mother could put on her sweater back-to-front, or a father could enter the dining room wearing wet bath-slippers and with swimming goggles on his head. Synne believed all these little signs were an indication of surrender and she could recognise them in herself, the feeling of being unable to conceal her inner-self well enough. When she saw her own reflection in the corridor windows, it was as if everything was fully visible, as if her self-awareness revealed itself purely in the way she walked, or that she revealed something based on details she’d chosen to highlight about her life when describing herself during a round of introductions. So what she actually represented at the centre, as an authority, and a professional, could feel strange, unclear. Yes, was she strong enough for the task? She too felt a growing sense of capitulation in her daily life, like, for example, a sense of paralysis after knocking over a milk glass on the kitchen table, just sitting there watching the milk run towards the edge of the table without reacting to the situation itself, and then watching the milk drip down over the edge of the table and forming a puddle on the floor, and only then, when the disaster had exhausted all its power, finally going to look for a cloth. This had to be what these parents experienced all the time, paralysed when their child throws up inside a shop, unable to do anything about it, having to mop it all up with his own sweater while the shop assistants run for the cleaning equipment and hold their noses. Another day on her way to work, Synne became suddenly hung up that she’d forgotten to turn the hob off — she’d boiled some eggs for breakfast. She saw her dog consumed by flames, heard him howling, while mile after mile passed by barely noticed outside the car window. She saw her neighbours equipped with fire extinguishers, saw that the residents-home on the other side of the road had to be evacuated, the oldest residents being carried out onto the pavement. But, when she stepped back into reality again, she was standing in the staff car park and had strangely enough, performed a relatively elegant parking manoeuvre between the caretaker’s car, with its trailer full of timber, and the staff manager’s slick, black, Audi. What did all this really say her about her? What did it make her?
‘We have a job to do’, says Synne. ‘Oh?’ the mother replies. Synne catches the mother’s gaze, it’s as though it’s almost leaking. She sees the colourlessness, the helplessness, feels suddenly sorry for her because this woman actually believes Synne can accomplish something for her child. She smiles. It would be infinitely easier to just let the boy die a dignified death, thinks Synne while placing a hand Egil’s head, stroking it. ‘But I think we’ll manage it’, she says. But the mother’s concern is not eased, as Synne had hoped, and she realises that now she is regarded in the same way as the other special educational needs teacher; who is this person I place my trust in? But Synne is not afraid to be measured, she feels her lips tighten, she smiles stiffly and confidently, and sees that the mother believes in it all and, once again, feels at ease, that her eyes regain their warmth, their squirreliness. She bends down and wipes something from her son’s eyes with a napkin, says, ‘There’. and stands up. ‘And now you are both probably hungry?’ The boy says nothing. ‘Yes, are you hungry Egil?’ the mother asks looking down at him. He rocks, drooling with spit, mumbling ‘mmm, mmm, mmm’. The mother smiles and looks up at Synne. ‘Yes, I think we are’.
Several parents emerge from the meeting rooms wheeling their children. A light and and easy mood reigns in the institution’s corridors. ‘It’s usually a little chaotic on the first day’, says Synne. ‘It takes a little while before things settle down’. When they reach the canteen they can hear a lot of laughter. The hamburgers are already on the table. The first to arrive are already attaching bibs, mashing food and watering-down the apple juice. It’s all a self-propelled system. The parents move mechanically around their children and solve tasks, while the nurse wheels out the food-trolley, full of small plastic cups filled with colourful pills and mixtures. A father asks a young boy from the kitchen if there’s more cherry yoghurt, another wonders where the plug for the microwave is, because his child only eat cheese if it’s melted. But Synne leaves her mother here, says ‘Bon appétit’. to her and ‘Bye for now’. to Egil, and turns and walks toward the staff canteen, where she has her own packed lunch waiting in the fridge. She fishes a carrot up from a water bath with some barbecue tongs, takes some small red and blue packs of salt and pepper to have with the liver paté and walks out. It’s beautifully sunny outside. She continues out to the front of the building, walks down a steep path towards the pond where she can hear the voices of her colleagues. She steps carefully down the last unstable stone steps, following the stream of ants swarming over the sun-baked stone beside it, heading towards the mound behind one of the fence posts surrounding the lawn. ‘Hi’, she says, sitting down on the bench, there’s just enough room at the end when they squeeze up. ‘Hey!’ says a social worker with dreadlocks. A wave of laughter comes from the doctor’s table beyond. Synne folds up her lunch-pack, smooths out the paper, lifts a slice of bread to her mouth and takes a bite.
The rest of the day is spent on get-to-know-each-other games. Synne stands and observes how the parents and children form rings down on the lawn. She is responsible of a child totally unable to communicate, she occasionally flicks away an insect that runs over the child’s arm, occasionally puts a question to the mute, terrified face, but of course doesn’t expect any response. Synne has done her share of playing, at the beginning of the 1970s it was she who lifted the atmosphere, dancing in ways that made everyone laugh, but now she had become someone else. The activity leader, a girl of twenty four, runs barefoot around in the grass whilst trailing a large red windsail behind her; waves of loud laughter and subsequent applause. Smoke drifts from the barbecue and the social worker with dreadlocks turns the sausages with a fork. Many parents have already found each other and have formed alliances. Some talk seriously between the trees, others try to make their children show interest in another child. A pedal boat sets off with fishing rods poking up into the air. Some, mostly the disabled one’s younger siblings, cycle on the asphalt path around the institution. A group of fathers come jovially around the corner, riding a four-man tandem bike and craving attention. Some wheelchair boys are placed in a cluster under some trees, each with a cola bottle in front, standing on a tray, turquoise straw sticking up. Around nine o’clock, the families begin to trek up to the main building to prepare for bedtime. They’ve been advised to allow extra time the first night because there are a so many new things to adjust to. Synne goes in last, pushing the trolley with hot-dogs, a bottle crate, jam-packed rubbish bags, bottles of dressing, ketchup and mustard. A father helps her push it up the last steep incline. He could easily have been her son at his age. And the parents commence their procedures, they can be seen running along the corridors holding urinals, washcloths, syringes and salt, new towels are taken from the laundry and returned dirty and suddenly - at some point during all the chaos of work and tasks - the parents realise that they are surrounded by people doing exactly the same things as themselves. A father meets another father at the decontaminator, both of them holding a bottle, full of sloshing, thick multi-orange urine; they smile briefly to each other before they sling the urine into the machine and put the bottles into one of the slots. One mother washing her laundry asks another mother if she has anything she wants to wash in the same round. Another shows another where the nappies are to be discarded. Synne goes through the corridors observing them and also makes herself available for any questions that might pop up. But they manage on their own mostly, we’re talking about wise and patient adults. Doors open and close, beds have to be moved to new rooms, bedside tables taken away to allow room for oxygen equipment, rechargeable batteries and hydraulic patient-lifts. But then, around eleven, there’s a change of tempo, the kids lie in bed with the correct number of pillows under their heads and legs, and are a problem solved. One by one, the parents come out into the corridor, a mother slides down the wall like an unruly child and sits down on the floor. She dries the sweat from her forehead with the back of her hand and says ‘Phew, that was that’. Another mother nods at her sympathetically and a conversation begins. Had they been at home, they might have been sitting on the couch now, totally worn out, but here there are others with the same exhausting evening rituals, who did not live a life where one can simply say goodnight to their child and then the day is over. That’s what is so beautiful, Synne feels, they realise that they are part of a community, a community in outsiderness. And this needs to be motivated: Synne goes into the kitchen and puts on the coffee, puts biscuits and spice cake on a dish and chops a watermelon up into slices, and when the coffee is finished, she pours it into a canister and lifts that onto a food-trolley and wheels that out into the corridor, then whispers: ‘Here is a little coffee and cake, please come and help yourself’. She likes the way she is acknowledged, that they lift themselves, perhaps a little baffled at this unforeseen concern for them, that someone notices them, and they get up and approach cautiously. And Synne knows it’s childish, but it feels good to be in this position.
At this point in the evening, Synne can retreat, lock herself into herself, knowing that she is not a person whom anyone will require before the morning meeting the following day. She hangs her clothes over a chair by her bed, sets the alarm on her mobile phone, never feeling so free as when she can lay down, crawl under the duvet with a whole night in front of her, and freely give in to her own longings.
The following days slide away. Each morning breaks with sun streaming through the windows. The families spread out in the landscape around the building. The woods are almost always filled with voices, except during mealtimes, and the pond always ripples from bathing children or electric wheelchairs driving cautiously on the jetty. Synne is manning a post at a hoopla game during the afternoon activity. She holds her usual course in depression management, and has a meeting with the boy’s mother and the house psychologist Kjell André. They find strategies for how to think about their lives, how to deflect guilt, and provide tips on how to become better at navigating beyondtheir circumstances, yes, as if their child in reality was actually healthy. ‘You have nothing to apologise for’, says Kjell André, ‘you have as much right to life as everyone else. Take the chance’, he says, ‘it’s your life’. Kjell André holds a two nightly course, which he’s given the title Developmental disability without known cause - what is it and how is it to live with? The mothers cry a lot, but the conversations seem to show progress, knowledge levels increase. Fathers raise their hands and ask the difficult questions that the mothers don’t dare to ask themselves. But Kjell André is a master when it comes to manoeuvring himself out of discomfort, using such phrases as: ‘I’m glad you just asked precisely that question’. Synne and her colleagues are agreed that the most important job for them is to assist in the forming of alliances between the family groups. ‘It’s that feeling of being alone and isolated which is the biggest challenge in everyday life’. Synne has said: ‘It is the feeling of estrangement from the normal which is perceived as the greatest strain. We must go in and broaden the space to be ourselves, remind everyone that it is okay to be different’.
Egil’s mother has made a friend who is here with her daughter, affected by a similar condition to her son. The only difference is that this girl can walk, albeit quite haltingly, but she walks! Synne feels moved when she sees friends walking together with their children, after having collected an extra jumper so that they can sit around the fire in the evening, when they sing along to Coldplay’s Paradise to which one of the fathers has learned the chords, when they wrap fleece blankets around their children’s gnarled bodies. She’s moved when the parents apply mosquito repellent to their children’s faces, as if they were quite ordinary people, moved when she hears them talk about other things, about everything from Facebook to future mountain trips, she gets so overexcited when she overhears them exchanging phone-numbers that she has to leave the room.
Final observation day. It smells like pork all over the institution seeing as the last meal at the summer camp is always bacon and pancakes. The boy is wearing the same clothes as he wore on the first day, but they have managed to go one round in the wash. Synne sits on a large ball and, as usual, has a notebook in front of her. The boy rocks back and forth and self-stimulates with his fingers. See the person, Synne thinks to herself, see this person. She looks. One must evaluate the person based on what is whole and complete, it is up to the observer to find the openings that build bridges between the inner and outer levels. He looks at her again, and then he looks away, looks at her, yells, looks down, moves his legs a little. Synne notices he has got some freckles on his nose, and is happy that he, despite having no explicit understanding of himself, can come home, go off to respite, and be a little changed since last time. This freckled face says to its surroundings: I have also experienced the summer! ‘Hello Egil’, she says. ‘Do I get to see your face today?’ Egil does not look up. ‘I think you’ve been so good while you’ve been here’. Egil rocks quietly. Egil makes no attempt to be anything else, he is self-sufficient, fulfilled and whole. He can be carried from one room to another, put down, carried from the couch to the floor, put down, and the whole time be the same. She scribbles on the sheet, repeats the same pencil stroke again and again, so the blue turns almost black. Yawns into her hand.
See the person, Synne thinks, see the stranger. She decides to follow his eyes, has noticed that he prefers to keep her in his side-view, that he pushes his pupil down into the corner of his eye, that he in this way senses her more than he seesher. An ophthalmologist had compared the boy’s vision to looking through a folded bread bag, but he had no reason to believe that vision impairment could strengthen the other senses and, in other words, create an alternative sense. Do not hit the stranger child, she thinks suddenly. Do not hit. See it! Some girls try out the climbing wall, the caretaker stands below and acts as belayer, the straps chafing him between the buttocks. During the final conversation with the mother, Synne had spoken a lot about the importance of ensuring there’s good light and a calm visual environment at home, together with clear contrasts between floors, walls and doors, because this improved Egil’s spatial awareness. She also recommended that there be minimal environmental changes, and that it was important to have established patterns and recognisable routines. When it came to communication, the mother needed to be clear, use body language and Total Communication for the meaningful words. It would be wise to stick to one type of soap, as smell was a sense the boy identified with. The mother said that Synne had to slow down so she could note everything on the scrap of paper she’d brought with her. Synne could see that she had very little spaceto write, that she’d started writing vertically, at the far edge, in tiny letters, and drew untidy arrows that pointed between the different notes. When it came to activity, Synne believed that everyday objects often worked just as well in play as more advanced toys, Synne had for example noticed that Egil had a lot of fun with a toothbrush. About this important point, the mother wrote nothing at all. It was toounbearable.
The fatigue Synne had felt for so long is now coming on strong. She really can’t understand why, she felt she’d always gone to bed on time and slept well. Now she has to concentrate on tensing the muscles in her thighs to keep herself balanced on the ball, pinching herself on her arms in order to cling on to the real world. She sees the worn rungs on the wall bars, notices the smell of the institution, she’ll soon have no other smell in her life than this synthetic, sterile but at the same time bodily, repulsiveness, she thinks. In the end she just lets go and falls forward, her notebooks slapping down onto the floor as she hits the ground, while the ball, after a few bouncing movements, rolls gently in the opposite direction and stops at the door to the sensory room. She allows her body to lie in the position it landed, face down on the mat with her arms beside her body and with her keychain pressed against her hip bone. She has Egil's mouth just above her, hears that little breath, hears as he starts pushing his joints against each other causing an uncomfortable cracking sound. Some children run outside in the corridor. Synne breathes, a trickle of spit runs out of her mouth and onto the mat. And then she feels his hand in her hair, that it strokes her cautiously, that he uses one big finger as a kind of feeler. But what is he feeling? Synne thinks. Know the human, she thinks. Know. He rakes her hair carefully, not hard, just nipping, and it calms her, she thinks that she just wants to close her eyes a bit, and in the end does that. Closes them.
The tube lights stare down at them, an old bumble bee buzzes against the windowpane. New shadows glide past the door, water-pistols are filled in the toilet sink, squeakily-wet sneakersrun away. A sigh rushes through the drainpipes. When Synne opens her eyes, she can’t understand where she is at first. The boy has wriggled his way to the opposite corner of the room and holds tight to the lowest rung of the wall bars. ‘Hi’, she says, not quite understanding. He has a nose bleed and is crying, he peers fearfully at her while she sits up. ‘But Egil’. she says. She stands up, walks over to him and lifts him up. Presses her cheek against his, it’s wet and warm. ‘Why are you bleeding?’ she says. ‘Hey, hey. What’s happened?’ He hangs flimsily in her arms, he has no muscles to hold himself up, just curls up like a large slippery worm, so she has to let him go. He falls limp as a pile of laundry. At that moment she hears someone walk in the door and then what she immediately understands to be the mother’s voice. Synne now sees the spots of blood on the rubber mat, she has to step aside so the mother can come in, after all she knows best how to comfort this stranger child.
Synne has walked up and down this stairwell for twenty-seven years, but has never stopped precisely here. This is an anonymous passage, a transit area between the bedrooms and the activity hall and not a place you would ever stop. There is a pencil sketch hanging on the wall of two parents holding a disabled child up in the air. The picture was already here when she started at the institution, and has become another part of the day-to-day which is no longer noticeable. It was a square of light on the floor that had made her stop. Light streaming through a narrow window which otherwise must have been covered with curtains. The window looks out on the back garden between the sleeping quarters and the offices, where the staff barbecue once or twice a year and where the trainees and the laundry staff, against the management’s warnings, smoke around a plastic garden table. She was convinced she knew the whole institution building, all the large and small rooms, she knew where she could find slip sheets, juggling scarves, mosquito spray, jigsaw puzzles, the keys to the electric beds and table fans, and therefore also knew all the building’s windows, all its viewpoints, but now the building showed that it still had its secrets. She thinks about her first weeks at the centre, how many times she’d got lost and arrived late for meetings, especially those held in the offices of the North Wing. During her career she’d attended three funerals of former colleagues. She remembers the staff photograph taken during her first days at work, it was some time in the 1970s, the photographer had placed benches on the floor. She’d been positioned in front of a teeming mountain of powerful men. She’d had the health minister at the table. But that was a long time ago, now there were new people in the offices, younger, and more vital. She knew she was on the way out, had a sad feeling of no longer being wanted, could see by the faces of her colleagues when she spoke at staff meetings that she no longer had any impact. At an end-of-year party a few years earlier, the doctors had set up a theatre piece where all the staff at the centre were parodied. When ‘Synne’ entered the room - she realised that it was meant to be her - played by a doctor wearing a wig and clasping a blue folder containing patient files: ‘No! No! No!’ shouted the doctor in a shrill woman’s voice, ‘We must be extremely meticulous with their diet, if not it’ll all spiral out of control!’ She laughed so much she had tears in her eyes, but was quickly back in her room afterwards.
A new summer camp is over. She’s got a tan on her legs and new mosquito bites. She always says that she has such sweet blood that she functions as a living mosquito-distracter. She always says that she attracts the smoke from the bonfire, so the best thing would be to sit on the opposite side from her. But was that right? Does she want everyone to sit on the opposite side? Doesn’t she want to be encircled just like everybody else? She feels above all tired, and with her hands trembling, thinks: No, she does not want them to sit elsewhere, that she’s been wrong from the start.
From her new viewpoint in the stairwell, she can see the maxi-taxis driving away with the camp-participants in their bellies. Who’s actually in the various cars, she’s unable to tell through the blacked-out windows. From one open window she sees a crooked, waving hand. She wishes she was strong enough to walk up the corridor and say adjø both to Egil and his mother, say that she’s sorry, but she isn’t this time. Now and then, you must be allowed to retreat, she thinks, now and then you must be allowed to stop having to be strong. She’ll anticipate the moment where once again, everything becomes quiet in the corridors and meeting rooms, then climb the stairs, take a detour past the pool, maybe tidy the equipment shelves a little, switch off the lights left unnecessarily on, lock the equipment store-room, maybe eat a piece of crisp-bread in the small kitchen — it’s been a while since she has eaten — maybe lie on one of the treatment benches for a short rest, seeing as the physiotherapist still has a few days left of his summer holiday. And then, finally, continue to her office where she can lock the door after her, sit on her chair, pick up her papers and start planning the future, write down her observations and evaluations, make note of any possible improvements on the pink sheet and give it to the receptionist, consider the questions that may arise with respect and courteousness, and start planning her own defence.