I’m somewhere deep in the enormous London-museums repository in a long, low, windowless room. At the far end a broken strip light flashes among the shelving and in this corner, pushed together like wheelie-bins at the back of an office block, are the iron lungs – cream-coloured coffin-shaped boxes that could be props from the deep-space stasis scene of an old sci-fi movie. One of these metal tanks has a head sticking out of it, collared by a rubber seal and staring at the ceiling; and when I look through the inspection windows – portholes for nurse and carer observations – I see the rest of him, frozen in time inside the machine. He’d have been wheeled back in here after his last outing on public display, for the long sleep among all the other objects. There’s something about the mannequin, trapped motionless in this box and locked away in the dark, that stands as a shrine to the people this machine served.
*
I’m one of the last people to be allowed to visit Blythe House, home of three national museum collections. The 5½-acre site is being sold – it will be flats and a hotel – and the 300,000 objects of the Science Museum collection are being sorted, categorised and packed, ready for transport to a more accessible home at an old RAF base in Wiltshire.
Waiting in the reception area was slightly unsettling. It’s very like a prison and I had a weird sense of déjà vu. I half-expected a buzzer to sound for visiting hour. Stewart, the curator who has agreed to show me around, explained as we walked into the building that I have probably seen it before – it’s often used as a location for TV and film. It was the headquarters of the Post Office Savings Bank before it was handed over to the museums in the late 1970s, and Stewart points out a few traces of the building’s old purpose as we descend the staircase that takes us to the rooms holding objects from the history of medicine.
In the late 1920s the engineer and industrial hygienist Philip Drinker used the negative-pressure principle to design An Apparatus for the Prolonged Administration of Artificial Respiration – the first iron lung. There’s a photograph from the time of Drinker standing over a small box. Look closer and you see a cat’s head at the end of a box, gums drawn back and teeth bared. He had triggered respiratory arrest by paralysing a series of cats with South American dart poison and (after a few dozen failures) proved his concept by pumping his machine and keeping the animal alive until the poison wore off. The machine that Drinker went on to patent enclosed the human body inside a metal tank; the head protruded through a rubber collar at one end, and at the other was a pump that raised and lowered the pressure inside the airtight chamber. Because the patient’s head was outside the machine, sealed off with a rubber collar, lowering the pressure inside the tank caused the patient’s chest to expand and air rushed in through the mouth. Raising the pressure in the tank compressed the ribs and the air was exhaled.
The iron lung quickly became associated with polio. The virus peaked in parts of Europe and North America in the 1940s and 1950s – coming in the summer, spreading fast and leaving before winter, it paralysed or killed half a million people worldwide each year. There was no way of keeping track of how many were infected – 85 per cent had no symptoms. The symptoms of those who did were mostly mild: sore throats, fever, headaches and vomiting. Yet the disease caused mass anxiety. Parents dreaded the summer outbreaks. Birthday-party invites were ignored and playgrounds were left deserted. When a child developed a fever, parents prayed it was just a common cold. If children lost mobility in their limbs, there was a helpless wait to see if they would be one of the unlucky 0.5 per cent who had paralytic anterior poliomyelitis, which could have devastating effects on the central nervous system. In severe cases, paralysis spread to the intercostal muscles between the ribs and patients were unable to breathe and died.
By the middle of the century, hundreds of iron lungs lined hospital wards, many of them used by children. The noise of the pumps whooshed, nurses checked the pressure and breathing rate, adjusted the tilt of beds and turned the pages of books suspended on stands above the children’s heads. Most patients spent a few weeks in the iron lungs, clutching a cuddly toy or doll in a splinted arm, before they recovered enough to breathe on their own. In a small fraction of cases, paralysis was more permanent and they became dependent on the huge, unwieldy apparatus. An iron lung would be installed in the corner of the living room, a massive presence that took over family life. Some might manage outside the iron lungs for a few hours, heading to school or college or work, then returned for respite. Some would sleep in them; and a few, where the paralysis was total, would spend their whole lives cocooned. By the early 1960s the vaccine, which had taken fifty years to develop, had largely eradicated polio, but the iron lungs continued to breathe for an unlucky few.
I touch one of the cold, hard lungs. It must have needed three or four people to move it. I imagine myself locked into a tank by nurses. Wanting to itch my nose. The rubber cuff sucking and puffing around my chin. The claustrophobia. Yet the panic of struggling to breathe was so dreadful that many polio victims described the relief of being clamped inside the machine for the first time and letting it breathe for them. I think of the moment I first joined myself to prosthetics in the limb-fitting room – the fear, the relief, the pain, the weirdness of it. These iron lungs make for even stranger hybrids.
Nestled among some of the adult-sized machines is a barrel-shaped lung just big enough for a baby or small child.
Stewart fidgets behind me. ‘Some of the team won’t work alone in this room,’ he says.
I turn to look down through the shelves. ‘You?’
‘I prefer the door open, but I’m okay.’
‘I’ve never seen an iron lung before,’ I say. ‘If anything should be shown to the anti-vaxxers, it’s these.’
Stewart turns off the lights and locks the door. We cross the corridor and he opens another room. Rows of cabinets and vitrines and shelves filled with medical objects from the past. I stop in front of the spectacles: lorgnettes, pince-nez and more modern bifocals. Next to them are the glass eyes, staring this way and that from a silk-cushion tray. I want to touch one, but don’t. Stewart is loitering. These are from the late nineteenth century. There is a variety of iris colours. The fine-painted pink capillaries beneath the sheen of glass are uncanny.
Other than preventing scarring in the socket and keeping muscles working by giving the eyelid something to blink over, a glass eye has no function. It is a cosmetic prosthesis. But to the wearer, it must have meant much more. People stare at an empty socket or eye-patch. With a glass eye in, life is easier. Fewer stares, and more likely to get that job, more likely to woo that partner. I wonder how the owner would have felt, lifting their upper eyelid and slipping in the lozenge-shaped prosthetic and seeing two eyes reflected back at them?
Many of the objects in this room might look like tools from a torture chamber, but this is the stuff of healing, diagnosis, pain relief – of making the body complete again. Keeping humans being, and feeling, human.
Stewart flicks the light off and locks the door behind us. He has one more room to show me.
I’m a husband. A father. A son. A brother. A friend. I’m British. A Londoner. I am a straight, white male. Six foot (I used to be 6 feet 2 inches) and of average build. I like watching sport, but don’t have any teams (other than England when they’re doing well). I’m dyslexic. I’m a veteran and have been to war, but don’t think about it much. Once I nearly died, et cetera.
This list shuffles around, depending on where I am, who I’m with and how I feel. And somewhere into that list I have to fit these new identities: amputee, disabled, medicalised. When I was in A&E a few years ago, waiting with pain and anxiety for antibiotics to treat an infection in my stump, these terms were all very near the top of the list. Last week, catching up with close friends, not on it at all.
If that’s my identity – my sense of self – then what makes up the physical me (the disparate, interconnected and entangled stuff of a body) is just as slippery. The interplay of genes and environment again provides the underlying blueprint, influenced by everything from the final fag my mother had before she realised she was pregnant, to what I had for breakfast this morning – all shape the body I have at this moment. Chemically speaking, I’m made up of around sixty different elements. Biologically, I am 65 per cent water. And around 3 per cent of my mass isn’t human at all; it is 10,000 or so completely separate types of organisms: bacteria, fungi, protozoa and viruses that live all over me, mostly in my gut. Although this microbiome represents a small percentage of me, there are 100 trillion of them. They outnumber my own cells by ten to one.
But my body – the one I identify with and embody – is atypical. Of my 68 kg, 60 are flesh-and-bone wetware and 8 kg are prosthetic hardware. (That’s almost all legs, plus a few milligrams for my contact lenses.) This makes me 12 per cent machine. What does that mean for how human I am? If being able to walk alongside Stewart, at a similar height, and look him in the eye is some measure of how human I feel, then that 12 per cent is critical to my humanity.
If you removed my legs and left me on the floor, the list would shuffle again. I am shameful, I am vulnerable, I am less of a person would rise quickly to the top – it would be very similar to stripping me naked in public. And I’d have to shove along the floor on my bottom, swinging my body between my arms to keep up with Stewart. Perhaps that’s why I am so moved by these objects; I have some idea of what they meant to the people who used them.
In 2008 there was a storm over Jackson, Tennessee. Trees fell on the power lines near Dianna Odell’s house and there was a power cut. She had spent sixty years in an iron lung. That night the emergency generator failed. Her family desperately worked the manual pump, but she died. She’d caught polio when she was three, the paralysis spread and she couldn’t breathe. She lived in her front room, cocooned in a technology that noisily breathed a lifetime for her. She passed all her schooling, received a degree and wrote a book, all from the confines of her iron lung. She said in a press interview, ‘I’ve had a very good life, filled with love and family and faith. You can make life good or you can make it bad.’
There are others: the man who ran a law practice from his iron lung; the artists who clenched brushes in their mouths to paint; the woman who worked behind a desk in her local bank branch, returning every evening to be shut in an iron lung by her mother.
When I’m not at home, my eighteen-month-old son sometimes takes one of my liners (the silicone socks I wear over my stumps to hold on my prosthetics) from the clothes dryer, walks into the kitchen, looks up at my partner and says, ‘Da-da’ and hugs it. Maybe that’s what I can feel here – the trace of people so dependent on this equipment that it became part of them.
Carbon-fibre feet and pylons, titanium adaptors, grub screws, valves, composite sockets and silicone liners – 8 kg of technology allowing me to walk down the corridor with Stewart. I have my biological left knee (I’m amputated a few inches lower on that side); it’s the technology that stands in for my right knee that I am most reliant on. As I walk, it adjusts to my gait. If I stumble or stop or take a step backwards, it will adapt and prevent me falling. It knows, for example, that I have now started to descend steps, following Stewart, and is lowering my weight predictably.
I’ve tried a few of these bionic knees over the years, and this seems to be the best all-rounder. It’s a Genium X3, the latest generation of microprocessor knees produced by the German company Ottobock. The marketing material says it’s incomparably close to nature, and goes on to list features that read like the technical spec of the latest German car: Dynamic Stability Control, sensing to 1/100th of a second the change from stance phase to swing phase; the Internal Motion Unit, with its gyroscope and acceleration-sensors measuring where the leg is in time and space; the Intelligent AXON tube adaptor, gauging ankle movement and vertical force; the Bluetooth function to link to an app on your phone and change settings and modes – the knee can cycle, run, play golf, it can even be set up for ice skating; the hydraulic unit with its two control valves; the knee-moment sensor; the battery with five days of life, charged through an induction plate; and all of it housed in a carbon-fibre frame and extra-robust polyurethane protective cover. (The German car comparison goes further: ‘on the road’ with the six-year warranty, this 1.7-kg unit costs around £70,000.)
At the centre of all of these components, and making the decisions, is the microprocessor. This little chip receives information from all those sensors and feeds it into a control algorithm, which, depending on the countless variables and permutations, decides what to do next. If it’s quiet – say, at the end of the day, when I slump down on my bed to take my legs off – I can just about hear the microprocessor thinking, crackling away. Sometimes I bring it close to my ear to listen. It makes a sort of electric squelching noise as it controls the valves in the hydraulic cylinder that change the resistance of the knee.
It really depends on how you define artificial intelligence, but if this knee is a device that perceives its environment and takes actions that maximise its chance of successfully achieving its goals, then perhaps I do have another brain down in my knee, and I should add it to the list of stuff that makes up who I am. Yes, it’s dwarfed by the computational power of my brain (the control I am exerting through my hips over the whole system – that is, me and the prosthetics – is far more nuanced than anything it is doing), but there’s no way I could keep talking to Stewart while descending the stairs without the extra control this little brain is giving me; I’d be thinking too hard of not falling. I’ve delegated some of the cognitive load of walking to a second brain, and it’s an important part of me and the way I experience the world.
Stewart unlocks the final room. It is bigger than the other rooms he’s shown me – about the size of a squash court. Metal shelves divide it in rows, like the aisles in a library. On the shelves are the Science Museum’s collection of orthotics and prosthetics. The soles of scores of feet face me on the right – wooden, leather, plastic – lined along the racks. It’s like looking at the end of a very crowded four-storey bunk bed. They are legs from the last hundred years or so. The years after the world wars are particular well represented. I walk the aisles, trying to take it all in. There’s a leg that looks as if it’s from a suit of medieval armour, riveted and shining silver, but the label says it’s aluminium with central knee control, and wood foot with toe and ankle joint – made c.1920. Then a dozen or so peg-legs and a pile of crutches.
We often pine for a better time, feeling nostalgia for the past. But the advances we’ve made in the last few decades make everything here look archaic; and, standing in front of these shelves, I feel glad I’m disabled now, with my trusty microprocessor knee holding me up. There is no better time to be an amputee, and probably no better time to be in any way ill or disabled.
The next aisle has orthotic shoes and an unnerving collection of ceramic children’s dolls. One is in a scoliosis brace and splints, for ‘drop foot’, complete with little teddy and lying in a little bed. The label says it dates from 1930 to 1950; probably used to demonstrate to child patients a convalescent stage in their prospective orthopaedic treatment. Next to it is a little model of an iron lung.
In the middle aisle I stop in front of a shelf with a two-arm prosthetic contraption. It’s worn girdled over the shoulders and looks desperately uncomfortable. The label says it is powered by a motor-driven car assembly. The arms are a mechanical automata of cylinders, wires and pulleys – sized for about a five-year-old. There’s another child’s upper-limb prosthetic with a split hook next to it, powered by compressed air. This is the cabinet of the relics of the late 1950s and early 1960s thalidomide disaster, which led to thousands of congenital malformations in children – the attempts of prosthetic and bio-engineering departments to right the wrongs of the scandal. But most of the patients with limb difference caused by the drug still found life easier without these contraptions – the feel and function of their residual limbs couldn’t be improved on by medical science, and they sit here, failed experiments.
In the last aisle I crouch to look at a small peg-leg. It’s made from a turned wooden chair leg attached to a socket and hinged knee brace. The label says it was made in a shipyard by a father for his three-year-old son in 1903.
It’s hard to get a grip on how much time this collection spans. Stewart is not sure. He puts on blue plastic handling gloves and picks up an upper-limb prosthetic. It’s made of dulled iron-plate work and has some sort of simple ratchet-and-gear system in place of tendons and muscles. The fingers are fashioned from more plates of sheet metal formed into a grip. Stewart holds out the label for me to read: Artificial right hand, iron, ?, owned by Götz von Berlichingen, 16th century. The question mark is ominous, and Stewart says as much.
‘Take this with a pinch of salt. We had an expert look at it, and he thought it was probably a more modern replica – maybe from some drawings of Götz’s hands.’
Götz von Berlichingen (1480–1562), or Götz of the Iron Hand, was a German imperial knight, mercenary and poet. His hand was taken clean off by a cannonball during a siege. He had a metal prosthetic made for him by an armourer, and continued to soldier. It’s said he could still grip a sword or reins, even a quill pen, with the iron fingers. He went on to become famous – a German Robin Hood – and, when not employed by kings or emperors, wreaked havoc, kidnapping for ransom and attacking convoys of merchants. His hand was a technological wonder and became a symbol of national inventiveness.
It’s true, there’s something not quite right about the limb that Stewart holds; the way the thing is put together doesn’t feel authentic, as if an archivist had added Götz’s name in a rush of vain hope, one Friday afternoon years ago, and had never got back to check it.
Limb loss and difference have been around as long as humans have suffered disease, trauma, punishment and congenital anomalies. For most of history, without the antibiotics and wound treatment of modern medicine, the first challenge, particularly with traumatic amputation, would have been survival – in some cultures, societal rejection for not being ‘whole’ would have made it harder – but it wouldn’t have been impossible. (Mammals that recover from traumatic amputation have been recorded thriving; African wild dogs have been seen supporting a three-legged member of the pack by giving it a turn at the carcass.)
Every once in a while archaeology opens a window on how disability might have been treated in the past. The skeleton of a man who lived around 4900–4700 BC was excavated near Paris. He was missing his elbow and lower arm. Analysis of his humerus showed that, after traumatic injury and some surgery, layers of new bone had grown, proving he had healed and lived for months, if not years, after his limb loss. It’s one of our earliest examples of a surgical amputation and hints at remarkable prehistoric medical skills. And we know this man was not shunned by his Neolithic farming community. Buried around him were sepulchral goods of a quality rarely seen in similar digs: a flint pick, a polished stone axe, the skeleton of a votive animal. All suggesting that, despite his deformity (or maybe because of it), this man had been a significant member of the team. It seems that community care and solidarity were important in this area of northern Europe nearly 7,000 years ago.
Time has disintegrated almost all evidence of the aids for rehab and mobility made by ancient cultures. Yet it’s easy to imagine our ancestors were resourceful enough, repurposing and fashioning rudimentary wooden splints or simple prosthetic attachments from what they had around them. We have only a few examples: 2,200 years ago a man from Turfan in China lost the ability to walk. He had tuberculosis and his knee fused in a 135-degree bend. He used a wooden prosthesis attached to his deformed leg, with a stabilising thigh corset. The leg had been wrapped in ox horn, reinforced by goat horn and tipped with horse hoof for grip, and the whole thing was worn, from years of use. His skeleton, along with the prosthetic, was uncovered in 2008.
The oldest-known working prosthetic was discovered in the necropolis of Thebes in Egypt, attached to the right foot of the mummified Tabaketenmut, the daughter of a priest, and dated to 950–710 BC. She was perhaps one of the first hybrids. Her big toe was made in three sections, of wood and leather, and was stitched together. It was carved to be lifelike, with a curved nailbed. The human big toe carries 40 per cent of our body weight and propels us forward – making a mechanical replacement a difficult problem to solve. But this toe’s hinges, the wear and tear and the holes for attachment all suggested that this almost 3,000-year-old prosthetic was functional as well as decorative.
*
‘This would have been our oldest,’ Stewart says, pointing at the bottom shelf. ‘But the original was destroyed in 1941, during the Blitz. Luckily, someone made this replica around the turn of the century.’
It looks like a smooth lichen-covered log at first, but then I see the way it shapes from ankle to calf. It’s made of bronze and wood, with fastenings where leather straps would have attached it to the thigh or waist. I read the label: Copy of a Roman artificial leg, c.1910. Original had been in the Royal College of Surgeons and had been in a grave at Capua, c.300 BC. I see the burnished bronze leg glinting beneath a toga, walking along a street 2,300 years ago. Surely an unusual sight – the Roman equivalent of my microprocessor knee. I have a sudden confusion of imagery: the leg being made in the foundry of a hot Roman market town; a soldier who walks after injury in a war of swords and shields; the leg buried with him, surviving as he decays; dug up to become a wonder of antiquity, an artefact of display cases and academic papers; and then destroyed in another war of planes and bombs.
An epilogue flickers, almost too hard to conjure: my own prosthetic knee lying on a museum shelf 2,000 years in the future; my body long dust, this technology being the last trace of me. I can’t picture the other medical devices catalogued around it, or what sort of a body the person who is looking at my leg might have.*
*
The dominant Western approach of philosophy and science has been to understand the human body as secondary to the mind. I think, therefore I am. In the information age, our brain becomes a biological computational device creating our mind in the same way a computer runs a program. But there’s something about having a body. Without it, our thoughts and actions would be empty. Embodied cognition is the idea that the way we think and perceive the world is deeply dependent on having a body. Our movements and sensations become essential in underpinning our thoughts – and mind and body cannot be untangled in any way that makes sense.
When we have a body that is dependent on med-tech to function properly, we are aware of this embodiment in different ways. Back during my rehab, I’d been surprised at how quickly the assistive technologies I used felt part of me. First the wheelchair – knowing, for instance, exactly how wide it was, and how to balance it on its rear wheels – and then the prosthetics and the way I incorporated them into my body. The repeated action of intense learning strengthened my neural pathways and physically changed my brain. This principle of neuroplasticity – which lets the brain continually adapt to changes in the environment – allowed me to rewire in response to the new experience of disability.
We used to think the adult brain had limited capacity for change, that we were stuck with the brains our childhoods left us. But during the first two decades of the twenty-first century (and in large part because of the advent of fMRI scanners, which can show us in real time different areas of the brain lighting up as we think) our understanding has shifted. The adult brain is far more plastic than we once believed and can respond to learning and experience by physically changing itself, even into old age.
We can extend ourselves to incorporate a tool instinctively, almost as soon as we’ve picked it up. We are a tool-using species, capable of learning to operate highly elaborate instruments. We can ‘feel’ how big a car is and thread it through the narrowest of gaps. Our brain deals with the problem for us by creating a representation of the large box-like space on wheels that we are inside. (That’s also why we sometimes duck when driving under a low barrier going into a car park, even though only the car is any danger of being hit; we have become the vehicle – we embody it.)
I was able to merge myself with the prosthetics so they felt part of me. For anyone who acquires a disability, the knowledge that we can combine our bodies with technology so intuitively should be uplifting. Embodiment is the universal compatibility of the hybrid human – we are set up for plug and play.
Time is almost up, and Stewart shows me a tray of upper-limb attachments as we move towards the exit.
‘These might be of interest.’
At first glance it is just a tray of vintage household tools, but there are more industrial-looking implements in there too. I read through the various labels: there’s a brush, a driving ball, a chisel-holder, a hammer, an adjustable clamp and guide for a screwdriver, a spiked device for holding food when cutting it up. They all have an attachment that clicks into the socket of a forearm prosthetic to replace an amputated hand – it could be a drawer in Captain Hook’s dressing table. Many were made after the Second World War, for getting the boys back to work. I close my hand into a fist over the tray and imagine slamming it down onto a nail. I replace my hand with a hammer and repeat the action; it’s easy to imagine. The nail is driven down with a clunk. It would be easy to embody a hammer in place of my hand – as easy as holding a hammer, perhaps easier.
We all possess a body and we are all, in some sense, possessed by that body. For the most part we don’t even register that our body is ‘on’, other than perhaps in those first few moments of the day when we struggle to boot-up in the morning; or if we are stressing ourselves with exercise or we are ill or hurt, then we are aware of it. But mostly we forget about our body. Yet I can’t help feeling that those whose bodies are dependent on technology are far more likely to feel that possession and to notice their own embodiment. It’s harder to forget your body when you’re disabled.
I take a last look at the hammer prosthetic, then push the tray of tools away. How would replacing someone’s hand with a hammer make them think differently about themselves? A body part that is for feeling, for hugging, for connecting with others, changed into an implement that is for hitting. The body made tool.
Stewart shows me out of the building with a quick handshake. All I can think about is the people who used those objects, now stored in the dark. I can hear it: the child calling for her mother as she was strapped into the upper-limb prosthetics; the groan of the ninety-year-old man pulling on his leg; the tears of the veteran when no one was looking – a hammer instead of a hand, his body repurposed so he could work in a factory; the mother kissing her daughter goodnight as she shut her into an iron lung. Every one of those objects was embodied by a person. They repaired, remade and sustained them, but they also changed their bodies and their identities.
As I walk, I can see my prosthetics stepping into my peripheral vision. They are not human. But when I am without them, I feel less alive.
* A curator at the Wellcome Collection asked me if I could loan a leg for a new permanent exhibition, Being Human. I gave them a C-Leg, the first microprocessor knee I was prescribed. At the gallery opening – champagne and speeches – it was strange looking at one of my own legs inside the glass box, and I left before anyone would notice that a part of me was on display. Perhaps it will be preserved in museum storage long after I am dead.