Daisy Sainsbury

When I was a child, my dad used to tell a funny story about my brother falling out of a window. Louis was five at the time, and they were at my grandmother’s flat in the north of England. It was an ex-council housing complex, the ceilings were mean and low, but it was the second floor nonetheless. Dad had been helping my grandmother unload shopping in the kitchen. He left Louis playing in the sitting room, and a couple of minutes later noticed that the flat was uncharacteristically quiet. Pacing down the corridor, he found the room empty and the window wide open. Louis was lying motionless on top of a car below, limbs sprawled, a hefty dent in the roof.
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By the time my dad got outside, the car’s owners, a couple in their thirties, had arrived. Louis was starting to stir. He clambered down from the car, limping slightly, and leapt into my dad’s arms with a squawk. The couple looked aghast. Jesus Christ, was he alright? Should they call an ambulance? Don’t worry, my dad told them, he’s just brain-damaged. Surely it couldn’t be that bad, they said. No, Dad laughed, it was just a couple of scratches. He’d be absolutely fine. They exchanged numbers to sort out the insurance; the couple drove away, two bemused faces under a concave roof.
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The story was funny because what my dad had said was true. Louis had contracted meningitis as a baby, which had left him with permanent damage to his brain, hence the squawking and the lack of understanding about gravity. Dad used to tell the story a lot, better than I do, with additional details each time. At one point the couple were Scottish, later they became German, I suspect because these were the only two accents my dad could imitate convincingly.
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The story was also funny because, like most good jokes, it contained a collision between two worlds. The world, my dad’s world, that had a Louis in it, and the world, the couple’s world, that didn’t. It captured something of the absurdity of Louis’s condition – the things we take to be universal to human experience, like fear or common sense, but that Louis has spent his whole life proving otherwise.
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As a child, I liked this story because Louis was the irrefutable hero of the anecdote. He was Clark Kent, flying through the air, springing back up unharmed, leaving an aluminium crater in his wake. Louis 1 – Car 0. Kapow! My brother, four years older than me, and untouchable.
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Fear is often considered a negative emotion. We package it up in a box marked undesirable, along with anger and sadness and envy. A lesson I learnt as a young girl is that, in healthy doses, fear has its uses. We could call it the anxious sibling of self-preservation. I realised that, aged around nine or ten, standing on the pebbled beach in Westward Ho!. Louis’s head had just disappeared from a little black dot, slightly darker than the surrounding waves, into the indistinct silvery mass stretching out beneath the sky. He had swum fast, with strong, assured strokes, making towards the horizon. My mother stripped to her underwear and waded out into the sea. Her voice was high and hollow as she called for him to come back. My little sister and I stood, pathetic on the shore, and watched. It was no use, Louis was out of earshot. Mum returned to the beach, shoved towels and Tupperware into a canvas bag, and began running towards the car. I knew the situation was urgent because Mum drove the whole five minutes to the nearest phone box in nothing but her underwear, the transparent white cotton leaving damp spots on the seat.
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The coast guards brought Louis home that day. He was picked up a mile off the coast, exhausted, but alive. A man with a navy-blue polo shirt and arms like tree trunks commented that Louis was a remarkably strong swimmer. I felt my heart swell with pride.
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Swimming wasn’t the only thing my brother was good at. He could run faster than anyone else I knew. He could hum the melody of a song pitch- perfect and then remember it several years later. He could drink a pint of squash in one gulp. He could ride a horse bareback – an impressive feat for someone who would never learn to tie his shoelaces.
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When we were kids, we used to ride a little white pony together, him straddled in front and me behind. In those moments, my understanding of Louis was not numerical. I felt his steady breathing and the heft of the horse beneath us, the rhythmic beat of its hooves and Louis’s back, warm against my chest. I felt the way his thighs communicated with the horse, and I felt his body bristle with joy. The numbers came later.
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As a teenager, I learnt that the average IQ of a human adult is 100 and that Louis’s fell somewhere below 20. Where most children say their first words between 12 and 18 months, Louis’s came when he was seven years old. The average adult has a lexicon of around 40,000 words, Louis’s climbed gradually and levelled off at around 500. Most of his language would not be comprehensible to someone who doesn’t know him well, and he never learnt to combine words into sentences. Over the years, clinicians have provided us names: sensory and motor impairment, epileptic fits, autistic spectrum disorder… The terms have accumulated and transformed. In the 1990s, he was mentally handicapped, by the 2000s he had special needs, and by the 2010s, well-intentioned pressure groups had christened him ‘a brain-injured individual with a profound and multiple learning disability (PMLD).’
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The medical nomenclature had a use in so far as it offered a door to entry for the provision of care, and, at times, a greater understanding of his condition. But deficits and Latinate prefixes always sat awkwardly on my wild-bodied brother. Subtraction was not a word in his vocabulary.
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When Louis sneezes, his whole body seizes up, anticipating the oncoming assault with glee. He makes a dash for the nearest window or television, projects squarely onto the screen, and then cackles like a villain from a film. He is always the least-dressed person in the room, clothes being wholly redundant when you feel neither cold nor self-consciousness. An image still branded on my brain is the afternoon my mum came to pick me up from my first day at secondary school. Louis leapt out of the car in his fluorescent green underpants. The flocks of spotty teenagers parted like bacteria shrinking from soap under a microscope. When he hit puberty, he would run into the garden in the morning and jump naked on the trampoline, semi-erect penis flailing in the air. A year later we moved to a more secluded spot in the Scottish countryside. My parents decided there was only so much that Grace, our elderly neighbour at No. 9, could take.
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This was why I could never understand Louis as a lack of anything. He was always so extravagantly there. His presence is bodily and loud, announced by shrieks of delight or thundering discontent. He is always bouncing on the spot or holding his hands high up above his head. He takes up space in ways that I could only dream to.
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When puberty caught up with me too, accompanied by the usual crushing self-awareness, I felt both embarrassed and envious of the unapologetic way he inhabited his body. While we mere mortals were negotiating our place in the world in relation to other people – always fitting around and moulding to – Louis was just Louis, wholly and entirely.
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My brother didn’t look anyone in the eye until he was five (this developmental step usually occurs around three months). As kids, we didn’t play together. He didn’t address me or smile at me, but one of the rare times he would acknowledge my presence was if I tried to hug him. If I lunged for a kiss, he would wince and pull away. When doctors tried to accord him the same courtesy as everyone else in the room, he would eye their outstretched hands with suspicion. It was, the doctors told us, a characteristic of his autism. He was protective of his personal space. When someone encroached on it, without invitation, he seemed to experience it like physical pain.
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The first time Louis was restrained I felt the pain of that intrusion in my own body. My sister and I watched from our bedroom window as two police officers knelt over him, his hands tied behind his back, face pressed into the grass. This scene came at the tail end of a long afternoon that began with one of his episodes (what doctors would later call violent outbursts or challenging behaviours). The episodes started when he was 14 and he was now 17. He was in an adult’s body, but unable to put frustration and anger and all the other emotions we could only guess that he felt into anything other than the small set of words at his disposal.
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Something had happened, or perhaps nothing had happened, but in any case, Louis was upset. He was shouting, loud, guttural roars from the bottom of his diaphragm. He’d swiped all the books off the bookshelf onto the floor, slammed the toilet seat until it came off its hinges, thrown the house keys in the water butt, and now he was making a beeline for the shed. Dad had told me and my sister to go upstairs. We had positioned ourselves at the window so we could watch the spectacle. From the safety of the other side of the double-glazing, it promised to be great viewing.
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Louis delivered, emerging from the shed two minutes later with an axe. Dad started running, which, if Louis hadn’t had the thought already – and there’s a good chance he hadn’t – now gave him an enticing moving target. Mum called the police. The police came. My superhero was pinned face down on the lawn, and all of us felt that wet grass on our cheeks.
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My father used to say it would be a miracle if Louis made it past childhood. He wasn’t being funny, he was being pragmatic. There was more than one window incident and a number of fretful waits on the beach. Dad had already decided that when it happened, we would scatter his ashes in the sea at Westward Ho!.
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Today, aged 37, Louis has proven himself invincible. A nine-lived superman (or Übermensch, as my dad would say in his best German accent). The same cannot be said for the British social care system, which is chronically underfunded and repeatedly fails the small and voiceless minority to which my brother belongs. Between 2019 and 2022, Louis spent three years sectioned in the learning disability assessment unit of a hospital – the fate of many people deemed unfit to live within the community but for whom adequate residential care cannot be found. When the pandemic struck, the hospital closed its doors to visitors for several months. During this time, Louis, along with others on the ward, contracted Covid-19. Because of his condition and the cocktail of tranquilisers he had been prescribed for years, he was in a high-risk category. But he pulled through – of course he did – and when visiting hours resumed, I went to see him.
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I tried to think of what we could do in the 60 minutes we had together. The pony we used to ride had long died and we would never have got horse riding past the hospital’s risk assessment anyway. There was a rack of automated hire bikes parked up outside the entrance. It was nearing rush hour and there was just the one bike left. I thought about it. I was unsure at first whether he would allow me this encroachment into his personal space. He had spent months in quasi-isolation and had been restrained several times because of what was now being called his behaviours of concern.
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He put his hands on the handlebars, and I gripped the padded saddle as he pushed off. His feet reached for the ground, hesitant at first, but soon we were soaring out of the hospital carpark. I felt his body pressed to mine, bigger than before, and close enough to notice some of the hairs on the back of his head were turning white.
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As the streets of a dour Scottish town shuttered past, my mind wandered back to a question, perhaps the question that had underpinned my entire relationship with my brother, which was love. It was a question that had bothered me for a long time when I was younger but had been buried recently in the more pressing fears about his health and wellbeing.
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Despite the kiss-shirking and the occasional thump when Mum and Dad weren’t looking, Louis’s love felt like a self-evident truth when I was little. Of course he loved me. He was my brother. I loved him. So that was that. When I got older it became less clear. Could you love someone if you didn’t experience empathy or didn’t have theory of mind? And what was love anyway? A configuration of hormonal responses in the brain – parts of his brain that I knew, from MRI scans, to be riddled with dark black lesions? A conceptual understanding of the self ’s relation to the other, and similar complex notions that Louis resolutely did not have? Of all the things that it was easy to accept Louis didn’t possess – a grasp of syntax, sensitivity to temperature – a capacity to love was the one that caught in my throat.
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As the bike hurtled back down the hill towards the hospital, my brother out in front, Clark Kent again, wind in his face, flying for an hour before visiting times were over, I felt the answer to my question. In the dimensions of Louis’s world, this probably was love. Love didn’t need a subject or an object, our being, and our being together, was enough.
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I signed back out in the visitors’ book and, waving Louis goodbye from the safe distance that he prefers, here is the calculation I made. The sensory delight that made him giggle every time the bike hit a pothole, the way he could hear Amy Winehouse on the radio in 2006 and hum it back, unprompted, note for note, years later, meant that when he was lying in his single hospital bed, when he was face down on the lino floor, a grown man’s knee pushing into his shoulder blades, somewhere in his mind is the memory of love. What my dad had told the couple that may or may not have been German all those years ago was right. Bumps and bruises permitting, Louis would be absolutely fine.
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