I arrive in Venice wanting to think about ribbons, binding and bundles – about the word fascia. In Ancient Rome a fasces was a bundle of sticks bound together with an axe, which symbolised a ruler’s power to rule and punish his citizens. Later, at some point in the sixteenth century, fascia entered the English language for anatomical use, referring to the tissue that binds the body's organs, muscles, bones, and blood vessels. Since it contains nerves, it is an organ almost as sensitive as skin. Yet well into the twentieth century, fascia was routinely cut away and discarded during dissections to provide a ‘cleaner’ view of the body.

Microscopic view of fascia. 
Image description: This microscopic view of fascia takes the form of thin, almost transparent strands of saliva or a spider's web, forming a shiny mass of criss-crossing and woven suspended tissue.  

The medical neglect of Ehlers Danlos Syndrome is unsurprising when I remember that fascia was considered a senseless envelope, dispensable as packaging or bubble wrap. I find this association of packaging and dispensability ironic, because if it assumes an analogy between the body – filled with precious and fragile parts – and something like a removals van – filled with precious and fragile possessions – then it’s obvious that not using enough packaging, or bubble wrap that’s gone flat, will not end well. Smashed crockery, strained ligaments, fractured bones. 

I think about this analogy a lot when I travel. In lieu of internal cushioning and binding I create an exterior layer: bodybraid, compression clothes, braces, tape and pillows. It’s a visibility I’m still not used to performing; invisible disability lurches into spectacle. It helps to think of it as costume, as adornment, something it might be possible to manipulate for pleasure. Ribbons, constriction, fetish. I want support garments that look like Jean Paul Gaultier’s costumes for Milla Jojovic in The Fifth Element. It shouldn’t be too much to ask.

Jean Paul Gaultier costume design for The Fifth Element
Image description: Still image of Milla Jojovic in the film, The Fifth Element. Leaning flush against the side of a brick building, a white person with orange hair cut into a bob wears a white costume that resembles binding and compression clothes, holding parts of the boy together for support.

In Venice, it’s harder to find ribbons than predicted. My romantic fantasy of a centuries-old carnival haberdashery or one-room ribbon factory is swiftly extinguished by reality. I am decades, if not centuries too late. I spy an ornate bronze bow suspending a crown over the altar in Chiesa del Santissimo Redentore, but it doesn’t offer much in the way of binding. Even Venice’s architectural fascia – the ribbon-like bands that line a building’s roof or ceiling – are mostly plain and unremarkable.

Chiesa del Santissimo Redentore
Image description: The inside of a church dome in Venice with ornate decorative stone and statues. Suspended from the ceiling, and central to the image is a small bronze bow which from it, suspended below in the gaping dome ceiling, is a small crown.

Instead I spend a lot of time walking, feeling fine as long as I am moving forwards, and then instant dizziness, pre-syncope if I make the mistake of standing still. PoTS episodes are easily triggered. In Venice I am at least never far from church where I can sit and recover. Through catatonic brain fog I scroll through two sister websites I’ve become obsessed with – Churches of Venice and Fictional Cities – containing trivia about the places visited by Proust, Cocteau, etc. Mostly my eyes glaze over. I eat something salty and sip electrolytes to increase blood volume and push blood back to my brain and heart. If I catch it quickly, the edge of the fog will start to lift after half an hour or so, and it will be safe to start moving again.

It’s tedious but impossible to write about being in Venice without writing about these physical interruptions. It’s a bit like this text, in which I am trying to write about Venice but my body keeps getting in the way, both in the moment of writing and in the memory of being there. In between managing my fascia and my blood volume I spend a lot of time staring at the water, thinking about the canals that tease through and wrap around the city, enveloping the buildings like liquid ribbons. Slowly, Venice is sinking. I feel a compositional affinity with the structures that are subsiding into the medium that holds them together, that can’t hold themselves up against gravity.

Raised walkway on flooding Giudecca. 
Image description: A wet and water logged path in a sunny Venice leads to a bridge with stone steps ahead. Along the left hand side of the path, closest to the water's edge, are long tables that act as a raised walkway when there is too much water. Some of these tables are stacked together, breaking apart the path.

At the Biennale, the most memorable pavilions are those that allow me to alleviate my symptoms for long enough to pay attention to the work. This usually means comfortable seating, or being wheelchair accessible, or – as in the Finnish pavilion, the simple addition of a handrail which allowed me to move around the space without getting faint. I was so moved by Jenni-Juulia Wallinheimo-Heimonen’s beautiful dangling kinetic wheelchair sculpture, and the accompanying video work in which disabled people use mobility devices to fantastical ends: the wheel of a wheelchair used to spin a cake, a wheelchair user suspended over a river, pouring cups of tea to people in boats below them. The representation of mobility aids in the work felt harmonious with the exhibition title, The pleasures we choose. The emphasis on disability, pleasure and playfulness was made all the more stark against the inaccessibility of the Biennale elsewhere, which only left room for disability as a barrier.

The pleasures we choose, exhibition at the Finnish Pavilion, Venice Biennale 2024. 
Image description: The entrance to the exhibition of a large white door pulled open and adorned with the opening exhibition text and a long wiggling burgundy handrail. Jutting out at different angles and obscuring some of the text from view, the rail begins in the centre of the door before trailing off, out of the top right hand corner into the exhibition space.

Sculpture by Jenni-Juulia Wallinheimo-Heimonen in The pleasures we choose at the Finnish Pavilion.
Image description: Suspended from the ceiling in the exhibition is a wheelchair. Taken out of its usual location, the wheelchair has become a sculpture, adorned with feathered fringe and mirrors which occasionally rotates and moves.

Because it can’t be overlooked – Venice is physically challenging, even for the able-bodied. While I’m there I meet a curator who directs me to Ellen Samuels’ essay Six Ways of Looking at Crip Time and I’m relieved by its generous engagement with bad feelings: grief, hate, resentment, frustration, loss. Samuels also lives with EDS, and she writes of the elderly people in her hydrotherapy pool who give her comparatively young body sideways glances. They wonder what she is doing there, and she in turn assumes they have enjoyed decades of good health, and resents them for it. But of course she admits, she can’t know that just by looking. She must contain her assumptions and resentment and get on with it. I try to do the same when using my stick on the vaporetto – to indicate that I very much do need a seat – makes people double take. 

One day my recently subluxated kneecap seizes up and I have to limp back to where I’m staying. In these circumstances I would usually get in the bath, to relieve it of gravity and encourage gentle movement. But there’s no bath in my room. It feels ridiculous to be so surrounded by water that I can’t access. The next day I’m supposed to see more of the Biennale, but instead I spend it in my room with my knee propped up, reading a recently published study on biomarkers in people with hypermobile EDS and HSD, part of the ongoing attempt to understand the genetics of these conditions. By analysing blood (itself a liquid connective tissue), the study successfully found changes in plasma, containing fragments not present in healthy patients. When I read this, aware of how much my body is craving suspension in a kinder medium, something clicks. A hypermobile body might be best understood as being compositionally closer to a liquid than to a solid. 

Rest day.
Image description: Daisy lies down in bed, with only her bare legs and supported left knee wrapped in a black compression bandage captured by the camera. Resting on her right thigh is a brown paper bag which is being used as a canvas. With brown smudges of a thick substance akin to coffee grounds, the outline of her supported left leg is depicted on the bag.

That evening the analogy gathers speed as I take my bad knee for a walk along the canals. Like water, a hypermobile body can move relatively fast in a given direction, but also like water, it is gravitationally challenged. It lacks the structural integrity to stand up by itself, and if expected to sit up in a chair it will sink into a puddle. Movement makes it powerful, but if you want it to hold a static position, your best bet is to provide some form of vessel or container. If not sufficiently held in place it will leak. It feels miraculous to have found an analogy I can use to explain why I can walk and swim, but will start getting injured if I have to sit or stand unsupported. My tissues start puddling. The difficult and beautiful water-filled city full of obstacles begins to feel like an ally. In place of the flexible solid of ribbons, Venice has given me another element with which to think about fascia. About being a liquid in the guise of a solid, about hypermobility as a tension between flowing and containing.

Roses sculpted from used kinesiology tape.
Image description: Daisy's hand with nails painted in a deep red, holds two small black bunches of kinesio tape. The way in which each of them are gathered and wrapped, makes them resemble small black roses in shape and size. Daisy is inside, located near a large window, which opens out onto a large expanse of blue water.

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Daisy Lafarge is an interdisciplinary writer and artist based in Glasgow. Her publications include the poetry collection Life Without Air (Granta 2020), a novel, Paul (Granta, 2021), and a nonfiction book on intimacy and infection, Lovebug (Peninsula, 2023). Her visual work has been exhibited at Tate St Ives, Talbot Rice Gallery, Serpentine Galleries’ online programme and elsewhere, and acquired by the University of Edinburgh Art Collection.

Daisy was the recipient of the Creative Scotland and Shape Arts collaborative disabled artist bursary and supported by The National Lottery Heritage Fund. Through the bursary, Daisy received a £5k bursary and travelled to Venice to undertake a week-long research trip, hosted by Shape Arts in connection with their landmark Disability Arts Movement exhibition Crip Arte Spazio: DAM in Venice.

Find out more about Crip Arte Spazio  Visit Daisy's website

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All images are courtesy of the aritst.
Banner image description: Daisy's hand with nails painted in a deep red, holds two small black bunches of kinesio tape. The way in which each of them are gathered and wrapped, makes them resemble small black roses in shape and size. Daisy is inside, located near a large window, which opens out onto a large expanse of blue water.