The ‘One-stop-Body-Shop’ is now closed.

Monday 29th August

It was a bit crazy at the ‘One-Stop-Human-Body shop’ yesterday – here’s a short clip of me going on about human beings, being human…It was an enormously challenging experience for someone like me, who talks (and writes) mostly going off on tangents, to stay on point, without a script (did you see what I did there?).  The audience were absolutely amazing asking questions about organ donation after euthanasia; scaffolding of hearts with stem cells; the effects of the Welsh Parliament’s decision to introduce presumed consent and so on.  Engaging, invigorating and amazing stuff for me.  This is what engagement can be about.  But for now…

 

Image result for image of closed shop sign

Life is a cabaret old chum…CODI on Sunday.

Friday 26th August 2016

So it’s time for the Cabaret of Dangerous Ideas on Sunday and I am going to be talking about Animal, Mechanical and Me presenting it in the format of ‘The One-Stop-Human-Body-Shop’. The title of the talk is inspired by Kimbrell’s book The Human Body Shop: The Engineering and Marketing of Human Life (highly recommended and I must re-read). The National Museum of Scotland in the form of the lovely Sophie Goggins has loaned me a couple of items (no spoilers). I watched the amazing Mhairi Aitken  give her talk last year on you tube and feel totally inspired.  I am so going to have Liza Minelli’s Cabaret as a ringtone on my phone…Body Shop 1 (no headshot)ps. I have decided not to go with an actual pig’s heart (not genetically modified obvs). I was going to source from the local butchers but thought better of it for health and safety reasons as well as the possibility of offence to some folks (their noses and sentiments).

MYDG – Dissecting Heart Surgery.

Tuesday 15th August 2016

So for the next trip out for the MYDG they are off to see Anna Downie at Old Surgeon’s Hall museum to get down and get heart dissecting. Ali emailed to say that I can go with them… So in the end I didn’t make it which I was pretty gutted about (no pun intended; I mean it was heart surgery they were doing :). Photos from the day shown below – how fantastic are these young folks!

A Made-Up Story about Everyday cyborg in parts.

by Gill Haddow

Really excited about the latest animation project about to kick off! Its the sequel to Maggie’s Story and we have decided to open up the narration to include other ‘everyday cyborgs’. I have back working with me the fabulous filmaker Ross Ziegelmeier https://vimeo.com/user25397788 AND a new animator Helen Cowdy https://helencowdy.com/

Here is some ideas that Ross has had about the overall ‘look’ of the animation where the everything is all painted and then digitized;. https://www.instagram.com/p/9Q7y9ESHPC/

https://www.instagram.com/p/9WvXwvSHBm/.

And here is some of Helen’s early art work for the ‘made-up story’:

 

Helen's Heart

 

The story line is going to follow different imagined ICD patients and they will be represented as collages made up of different images that reflect aspects of their identity drawing upon who they were, what they did, where they live – I have made up the characters. Their identity is therefore literally inscribed on their body. The film follows them through the 5 stages of the cyborgisation process from 1) Becoming cyborg, 2) After Surgery: In but not forgotten 3) Damocles Sword  4) The shocking blame 5) The storm and 6) Acclimatisation.

It’s gonna be good!!!

 

 

Getting the cyborg groove on…

So the young people have been in the studio with Patrick getting their cyborg grooves on and as the man himself says they are all keen and full of cool ideas! Here is a little of what they got up:

  • Started off with intro to me / what I do / a little bit about how I do it, then a little studio tour.
  • Moved on to look at some videos from previous projects highlighting the part sound plays in making things feel polished and immersive.
  • Let the guys experiment with some custom instruments I’d made for the project using music boxes / guitar harmonics and cellos as per my initial research.
  • Explained the process of sampling every day sounds and turning them into sound-effects / the art of foley etc.
  • Recorded the guys experimenting with the launchpad (sample pad which is used to trigger the custom instruments I have created) which allows very quickfire and hands on possibilities for composition.
  • Showed the guys that the system records all of their actions and when played back – can give visual feedback (a little light show in this case but could as easily be triggering real-time animations / video clips in direct response to the sounds being played).
  • Did a demonstration of creating light-sabre sounds using a combination of field recordings, the doppler effect, signal processing and some imagination 🙂
  • Layered the composition they created over the top of these sounds to demonstrate how music when layered with sound-design can help suspend belief and cover over any cracks in terms of inadequate sound-design and how that could be used to make things sound more polished than they actually are.
  • Talked about the basics of composition – happy / sad / driving / how to use simple tricks to create appropriate moods.
  • Demonstrated the need for underscore as opposed to music which might interfere with dialogue.
  • Set an exercise to pick 5 colours and then think about what sound might be associated with each (for example – yellow >> sun >> frying bacon or sizzling).
  • Talked a little about Hyper-realism e.g: making things sound larger than life or putting in sounds that wouldn’t strictly be in a scene but that help tell he story through sound (for example – there isn’t a definitive “night sound” depending on location, but things like Owl’s hooting would underpin the fact that it’s night – actual recordings of night-time environments might be too subtle but that it all depends on the context – there are of course many, many ways to approach this and we can get more into that detail in future).
  • Also advised to take note of any cool sounds they find whilst experimenting in other areas – note down and anything they like the sound of, they can then come back to me and I’ll help them re-create / record / as appropriate.
  • I explained that I am simply a tool to help them realise their ideas and although I’ll be working more closely with them towards the end of the project – I can be called on at any time to assist / help inspire or give guidance.

AND click here for some early sound experiments with the cello!

Reflections from Pippa on Writing ‘listen to our hearts’.

Commentary on writing ‘ We would like you to listen to our hearts’

In my writing I’m interested in exploring how humans and technology live alongside each other and influence each other. For example, I’ve written a short story about the way in which a lab robot affects its human colleague, and my novel explores the emotions engendered by operating a telescope.

Outwith these obvious ‘sciencey’ settings there is a whole world of people and technologies to play with in fiction, and this is what has been intriguing me about Gill’s work.

I chat with Gill about her project and she gives me a lot of information on the medical devices she is studying. I’m fascinated by the thought of having mechanical additions to your body that are outwith your control and that act autonomously. In particular, the ICD has the ability to act suddenly and without any warning by delivering what is called ‘shock therapy’ to the patient’s heart. What must this feel like? Does the patient spend their entire life waiting to be shocked?

We discuss and agree that having a mechanical device working inside you, turning you into an ‘everyday cyborg’ as Gill has termed it, doesn’t necessarily detract from your humanity. On the contrary, it may add to it because there is no sufficiently complex definition of being human that accounts for our experienced lives. For example, Gill says that the standard modern discussions fail to take into account the wider society. Can we be human in isolation, or do we need other humans?

I think of the Ubuntu saying ‘I Am Because You Are’ (which I have just used for an anthology of writing about general relativity I edited). Perhaps this emphasis on trying to define our humanity without other people is a peculiar modern and western phenomenon.

And I think of other aspects of being human, such as clumsiness. Can a machine be clumsy? The German author Kleist wrote a famous essay on marionettes showing how their mechanical precision marked them out as inherently different to us. This leads us onto the ‘uncanny’ – Gill and I discuss the fact that objects trying and failing to be human, such as prosthetic limbs with artificially pink rubber surfaces pretending to be skin, can evoke this sense of something that is not quite right. Whereas prosthetic limbs which are simply bits of steel are more ‘comfortable’, their form is obvious and they are not trying to mimic the look of a human. (I’m reminded of my recent trip shopping for furniture and seeing a dresser that was obviously machine-made, but that had marks on it designed to look like those made by a person. It was very off-putting.)

Gill and I return to the subject matter of her research; as well as ICDs we talk about heart valve replacements. These can be mechanical or ‘biological’, i.e. from an animal, usually a pig or a cow. When I google this later I note that NHS guidance for potential recipients of these valves simply says that the valves might be made from ‘animal tissue’, with no further explanation of their source.

The NHS guidance also says the mechanical valve makes a ‘quiet clicking noise which can be disturbing at first’. That word ‘disturbing’ is itself quite disturbing and reminds me of Edgar Allan Poe’s classic horror story ‘The Tell-Tale Heart’ in which the relentless ticking of the murder victim’s heart (as heard by the narrator-murderer) is beautifully echoed in the sharp rhythms of the story’s language.

Just as the ticking valve is invisible and inserted deep within the patient’s body, I think it would be interesting to ‘bury’ Poe’s scary story deep within another text, maybe online, so that the reader can click on the surface text to find something else. Perhaps that surface text could be constructed out of the NHS guidance.

But I want to start by writing about the experience of having an ICD implanted within you. I read Gill’s paper based on interviews of patients, and then I read more NHS guidance. The content is interesting but I’m more struck by the way this guidance is framed, ‘we’ (the NHS experts) give guidance to ‘you’ (the reader and patient). ‘You’ are repeatedly told what ‘you will feel’.  ‘You’ are also told that ‘your doctor’ will do this or that. There is a clear hierarchy – with ‘we’ who are the authors and experts at the top, and ‘you’ at the bottom. There is no question that ‘you’ will accept this guidance, because ‘you’ seem to have no option.

The guidance aims to cover aspects of living with the ICD, including the emotional impact. It states unequivocally;

‘It is only natural that you will feel anxious about living with the device. This is normal.’

So I realise that the anxiety associated with the heart condition may now be transferred to the ICD, and perhaps that anxiety is actually increased by the presence of the device.

I am also intrigued by the idea of the ICD transmitting essential information about the patient – and this information cannot be controlled or even accessed by the patient. The information is used to monitor the patient’s heart and the function of the ICD, and it allows the patient greater autonomy, they don’t have to visit their doctor so often. But who sees this information and how does it feel to know that you’re transmitting a coded version of yourself into the airwaves?

In writing a story (any story) the first and most important aspect for me is to establish the voice. Who is telling this story and why? The voice is constructed from its choice of language. I realise I can tell a story through the guidance, both real and fictional, as well as the patients’ responses to it. ‘We’ can be the voice of the guidance and then switch to being the collective voice of the patients which can perhaps subvert the view of the patients that is disseminated by the guidance. That way I can emphasise what the patients share – that sense of common humanity that goes beyond the individual. In this case, the knowledge that other patients also have ICDs gives rise to this collective voice; ‘we’ have experienced something together even though ‘we’ have never met each other.

I spend a bit more than a week thinking and scribbling, and then send a draft to Gill. She comments that perhaps the language could be made more generic so that it’s relevant to both ICDs and valves. I adjust the story and tinker… and then it’s done.

Next stop is the Edgar Allan Poe mash-up. Watch this space!

Pippa Goldschmidt short story!!

So happy that Pippa has written a short story for animalmechanicalandme.  It is fantastic and I love it.  Coming soon will also be a reflective piece from Pippa on the writing of ‘We would like you to listen to our hearts’.  Do please let us know what you think.

 

We would like you to listen to our hearts

Your device

Because of your condition, your doctor has decided that you must have a smart device implanted in you.

Your procedure

This is a straightforward procedure, during which the device will be inserted into your body and with its wires entering into your heart. You will be sedated throughout, and you may not have any recollection of the procedure afterwards. Your doctor will be able to explain anything you don’t understand about this procedure and how the device should help to alleviate your condition.

Your anxiety

It is only natural that you will feel anxious about living with the device. This is normal. Before you had it inserted, you probably felt anxious about your body and its problems. So you have learnt to live with this anxiety and have probably noticed how it moves around your body, associating itself with one thing or another. In fact the anxiety may have been the most obvious manifestation of your condition which may not have exhibited any other symptoms.

Your data

Your cybernetic device will automatically send medical and technical information from your heart to a database for monitoring. When you are allowed to go home after the procedure you will take with you a special appliance which you will plug into your phone line and which will transmit the data from the onwards. The data is coded and transmitted on a specific frequency used for medical purposes. Nobody else can hack into it, or view it, or control your device. Your doctor will be able to view and evaluate the data on a special secure internet site, and will use it to ensure that your device is working correctly.

Your data will travel through the air, criss-crossing with that from other patients, like silent speech. You will never hear it, and you can never utter it. From now on, nothing else in your life will be as constant as the device transmitting information about your heart 24 hours each day. You may be curious about the only person who sees your data, who administers the database. You won’t guess that they work from home, sitting in front of their computer in their pyjamas and trying to work out how to earn more money.

 

You will feel a connection to this man (you will have guessed correctly that it is a man) who sees more information about your heart than anyone else in the world.

But you will be mistaken in thinking that your imagined connection is real. The database administrator does not know your name, to him you are an entry in the database; a single row stretching chronologically from left to right. Your identity is encoded and transformed into a unique combination of letters, numbers and symbols. You may be IB2377&@ or you may be AX384*. Nobody knows.

But you may wonder what the database administrator thinks.

After 5-7 years the battery in your device will need replacing. Similar to the cells in your bodies renewing themselves, after that time the only constant aspect of you will be the wires leading from the device into your heart, like the deep taproots of a tree, unseen but vital to life. And if the material aspect of your heart itself renews itself year on year, then the only unchanging feature of it will be its fault, this tendency to tremble and quiver.

The device will not stop you from dying of other causes. When the time comes, you may wish to ask us to turn it off, so that you are not kept alive beyond your wishes. We will be respectful of your needs.

 

Your feedback form

You will have received a feedback form. Please complete it and return it to the nurse, three weeks after your procedure. All feedback from you will be treated confidentially and will be used to improve our future services for patients. Please supply as much detail as you like in the blank box on your personal experiences of this procedure.

 

Your life after the procedure

You can engage in all types of physical activities and drive a car 4-6 weeks after the procedure, but take care of the wound in your chest and do not let anything (such as a seatbelt or your partner) rub it.

 

Two or three weeks after the procedure you may decide to go on holiday with your partner. You may consider a beach holiday but the scar is still likely to be quite sore, and the device prominent and visible just under the skin on the left-hand side of your chest.

 

Therefore, you may choose to go somewhere that is not so hot, where you will be more comfortable in loose clothes that cover this new addition to your body. You may feel anxious if you go somewhere that is remote and distant from any medical facilities, even though you will almost certainly not need to use them.

 

Your partner may wish for a quite different sort of holiday, something a bit more exciting, but will understand the need to remain silent about this. In fact your partner is likely to remain silent about a number of troubling issues, such as the difficulty of having sex with someone who is afraid of being touched in case the wires in their heart get dislodged, even though your partner will have reminded you repeatedly that this cannot happen.

 

We have found that getting away from home at this time after the procedure can help clear the air. Why don’t you drive to the coast and sit in a car at a spot where you can watch the sea? The repetitive wave motion is known to be calming to people in your situation.

 

We recommend that you and your partner sit side by side for a long period of time (2.5 hours was found to be optimal in a recent study) gazing out at the sea. Try to resist the impulse to speak. Let your partner lay their head gently against your device so they can listen to it. Make sure you look down at your partner’s head and notice the way the hair curls around their ears. You may not have noticed this before. Outside the car the sea will continue to crash against the beach. The tide will be coming in or going out.

 

Your partner will comment in an unusually quiet voice that they can hear a pulsing or a clicking noise – they can’t decide which it is – coming from inside you, and you will agree and say that since you had the procedure you often hear this when you are trying to sleep, lying there in the dark room wondering how long you will live and how you might die, given that the most obvious cause of your death has now been remedied. Your partner (who will now be sitting up straight and looking out of the window at the advancing or receding tide) will reach over and lightly touch your cheek, reminding you of how they first did this several years ago, on that night in the pub when you told them about something personal and private, thus changing in an instant what had until then been a light-hearted fling into something more meaningful. Your partner will be reminded of this moment too. They will reconsider their desire to get to know better their colleague who has been very understanding throughout this rather stressful time.

 

Take a look to your left and you will notice another car parked, another couple sitting inside and facing the sea. One of them will bend over and appear to be listening to the other one’s chest. The person who remains upright will run their hands through their partner’s hair and even through the distance to this car and the thickness of the car window you will notice a small tear making its way down their cheek, as they remember that moment in the hospital when they first saw the line wavering across the screen, as if getting lost on a map.

 

The sea will continue to shift back and forth and you will feel at peace for a brief and lovely moment.

 

 

You said there was a support group for people like us, but we’ve not heard from anyone.

Also – we wonder if anyone will ever read what we write. We expect some of you have been cut, anyway. We can’t imagine anyone in the NHS actually has time to read these forms.

We do worry about what the database administrator sees in our transmitted data. Maybe echoes of past experiences, of lovers discarded, of children abandoned, of the pain that has receded but left its mark like seaweed deposited at high tide. A dark frill of experience.

You warned us that we must live quiet lives and that’s what we choose to do, spending time in our living rooms and looking out. There’s a high hedge between the houses and the road, and only the tops of people’s heads are visible as they walk by. Never their faces.

We like to iron. You told us to avoid strong magnets, and to be careful not to hold mobile phones too near to the device. But you did say that irons are harmless. We’ve grown adept at manouvering the irons into the tiniest nooks and crannies, steering them between buttons and into cuffs. We make clothes look new and flat, we rewrite their history of being worn, their experience of human bodies.

We would like to meet the database administrator; he’s the reader of our stories. Writers and readers are supposed to feel an invisible connection, aren’t they? Well that’s how the administrator feels to us, as if he’s reading the stories our hearts are writing. He sees something about us we can’t see ourselves. The way a lover sees a loved one. Can you tell us who he is?

We like living in places where the pavements are predictable and the gardens are as neat as hospital wards. Where the spacing of trees is precise and regular. We find it helps.

 

We did what you told us to do, we went to the coast and watched the sea, and we noticed that the waves aren’t all the same size. Every now and then a wave is much bigger than the ones preceding it, for no obvious reason. This unsettled us. You didn’t warn us about this. Neither did you tell us about the small boat on the horizon, and the way it would appear and disappear during those hours, apparently at random. And later, when we read in the newspapers about a man lost at sea, and even though it happened many miles away from where we had been instructed to go, we couldn’t help remembering this boat – perhaps with nobody on board, and no course set for it.

The list of things we must avoid sometimes feels endless, as if we’re being hemmed in by every new invention. We grow nervous in the shops and airports. We shrink back from security gates and worry about looking suspicious. We carry our medical card with us at all times, as instructed by you, but we still have to explain ourselves again and again.

What we are, and why.

 

Please can you tell us who he is? We think it would help.

 

We’ve worked in a factory, making clothes and other household items such as bedsheets. Sitting at sewing machines, feeding them fabric for hour after hour, like making endless offerings to small automated gods. Talking – even though nobody could hear anybody else – but that didn’t matter.  The air in the factory thrummed with the noise of the sewing machines.

And when the bell sounded to signal the end of the shift and the machines fell silent, there was an odd absence. The gap in the noise was a silent, secret stitch rounding off the day’s work. Stopping it from unravelling.

Once, when we stopped working the sewing machine, it kept going – so quickly we couldn’t see the needle – just a shiver, a metallic gleam in the strong bright light. As if we were controlling it with our minds, except we had no control over it at all. The quiver of the needle as insistent as the damage to our hearts.

We loved that work for its predictability, its mechanical rhythm was strong enough to keep us going even when we sometimes felt faint or dizzy because of our hearts. We can’t do that work any more, so we sit at home. The hour between 5 and 6 in the evening is the worst, when we know that other people are travelling home from work and looking forward to that moment when they arrive at the front door. We never arrive anywhere. We just sit. That hour is an absence, reminding what has been taken away from us, as well as added, during the procedure.

 

The device feels like an eavesdropper listening to a phone conversation. Except the conversation is in code, and we can’t understand what our bodies are saying.

We would like to know what the administrator feels when a row of data in the database comes to an end. When a device stops transmitting. Is there a sense of loss?

It’s odd to think that there is something so precise and calibrated within us. We were never any good at experiments in school, our hands on the oscilloscope failing to find a trace of the battery’s current. The green line flattened out or bunched up into unreadable noise.

We have read that a healthy heart constantly balances on the border between predictability and chaos, as if travelling down every branched road on a map. We know our hearts have had these endless choices taken from them, so we have learnt to appreciate clockwork motion. Pendulums. The second hand of a watch making its steady way around the clock face.

We’re sitting in a thunder storm, waiting for the lightning to strike, that’s the only way we can describe waiting for the device to work. There’s no sound nor clouds. But we can feel the electricity gather, and we can’t take shelter from the storm because it’s inside us.

Even though we can’t hear each other, we persist in listening to the silent orchestra of our hearts stretching through the air and surrounding us all. We would like you to listen to it too.

In-Valid Youth (robot group)…

Absolutely amazing photos, sounds and animation coming out of the In-Valid Youth project (or ‘the Robot Group’ as its been renamed). This is just so exciting and looks like so much fun. I should have factored more of me in for the fun too….

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There are some great stories coming out already about ‘Huminal’ for instance, see here for the animation on the MYDG page: But I am saying nothing more in fear of spoilers….

Men, women and everyday cyborgs

“Clearly there is a gender bias, the question is how does this gender bias happen,” Deng told me. “What are the decision making processes and branching points where the female gender is not having the same access to care as the male?”

An interesting blog post about a possible gender stratification with men more likely than women to get heart transplants; artificial and human.  See here:  http://motherboard.vice.com/read/a-heart-two-sizes-too-big