Gill Haddow

Kate, Alison, and Ali met today to talk about what we are going to do when we start February 2016. Everyone is pretty excited.  We began to talk around some of the key processes we needed to get in place.  For Ali, it’s recruiting young people from the local school Craigroyston Community High School and so not just those young people who drop in at the MYDG.  Some of these young people who were involved in a previous art project called ‘Pulse’, a live street event, might be interested.  Our timetable will have to keep astride with the school curriculum that will be more limited.  For Kate, it’s time to get in touch with the animators and make sure that everyone is on board and gearing up.  A huge benefit for them is the fact that they will have free rein to work with the young people.  Other artists we might want to involve are authors and novelists, and poets.  Screen Education Edinburgh are going to help with the editing of the film and Kate thinks that they have nodded positively to this.

What is the best way to enthuse the young people about the project; do we hot-house them? Sounds painful but, as Ali, suggests we can take them away for a day and work with all the different parties that day?  Might be easier than scheduling in all the different artists to come in at different times?  Or do we need to do both?

Can we get institutions such as the National Museum of Scotland involved as they have a new Science and Technology Gallery opening in 2016 that will have prosthetics and ICDs etc? What about the Filmhouse and their knowledge of presenting films?  What Professors can we involve to present on some of the ideas for In-valid Youth?

Timetabling we might be looking at getting the project active for 6 months in September-March 2017 giving 6 months lead into and 6 months post for editing etc.   First things first, we need to write to Craigroyston to see if they are happy with recruiting the young people.

 

February 2016

Gill Haddow

Call me crazy but I have just signed up to to do the Cabaret of Dangerous Ideas, taking place at the Edinburgh Fringe Festival in August this year  http://codi.beltanenetwork.org/about/.  Here is my pitch and I think I might dress up as a mechanic or shop assistant:

The Garage of Animal, Mechanical and Human Spare Parts.

“Why thank you for popping by my ‘One-stop-body-shop.  It is very forward thinking of you to choose what type and kind of material you would prefer for the repair and replacement of your organs.  Currently, I have several options for you to consider; deceased or living human organs from others are all the rage but supplies are limited.  We can also think about the more expensive option and advantages of ‘grow-your-own’ organs?  A bit pricey?  Organs from non-human animals (genetically modified pigs) can come in a little cheaper.  No we don’t do the organic option.  You’re vegetarian?  However we can do so much with technology nowadays you might want to think about the cybernetic options (we are expecting a delivery next week).”

 

December 2015

Gill Haddow

I have just been for the interview for a Beltane Public Engagement Fellowship – in order to get them involved to help evaluate the project I also need to get some significant training in public engagement. I was asked to prepare a 5 minute spiel on what I would say to the young people of Muirhouse about the project so here’s what I presented:

I am going to tell you a story.  Parts of it are true, parts of it are partly true and other stuff might be true.

My name is Dr Gill Haddow. I trained as a medical sociologist.  I study society.  My speciality is in human identity, human bodies, and human parts.   Here’s the story.

We are in the present day. Someone who is about your age and who lives around here has a disease.   Lets’ say it’s a really rare genetic disease.  They are being destroyed inside and out by this genetic disease that has no cure.  The only way they can live is if the organs and limbs that have the disease are cut off or taken out.  Actually here’s another example, someone else around here maybe about your age was born with really important parts of their body – both inside and out – missing.

Here comes the good news.   It’s the future – not so distant future.  So picture this – the ‘missing parts kids’ have the choice now to replace or repair parts of their body that they never had or that got cut off.  There is a small detail however, a small catch there are only two sources of where they get the replaceable parts and they are not human:

1) Animals; in the not-so-distant future animals can be used to repair or replace human bodies. Scientists can grow human organs inside pigs; or they can make the whole pig more human. It has to be pigs because there are lots of them, they are not special like monkeys, and they are roughly the same size as an average human. Doctors can change the pigs or their parts to be more human and then kill the pigs to use the parts that are needed to repair. IT sounds cruel but we eat bacon so no real difference right? There are problems. First of all – human bodies don’t like any other animal or human parts being put inside them. The immune system that protects the body from viruses say, attacks anything that it senses is not self.   If you have a pig organ or hand or trotter then you are going to have to take a huge amount of drugs to stop the body attacking the new pig organs. If you don’t take or get the drugs the part is going to slowly rot. Like a bowl of mince well past the sellby date. Here’s another problem. What if you start to act like a pig? Having a pig organ is different from eating a ham sandwich. The pig organ stays in the body – the ham sandwich doesn’t. Heres what you get – you get to live but you have to take a huge amount of drugs that your life depends on, you are not sure whether you are still human AND to make it worse, everyone knows this. You have no friends, people cross the road because they are worried they might get some pig disease (like bird flu) and you are never allowed to have a family.

2) Machines: in the not-so-different future we can use machines to replace or repair organs or limbs. These are not just putting in an artificial hip or knee joint. These are smart machines that can work by themselves or can be controlled by thought.   Smart technologies such as these can be used to replace your hand or your heart. But not your brain. The problem is that maybe the machine can have too much control over you – how do you get something out of you that you can’t remove?   Also all machines at some point break. How would it feel to have a machine going crazy inside or on you? Plus most human-machines are like robots – the Cybermen in Doctor Who or Robocops tend to be less human; so you might not be a pig but you might be a bit robotic. In fact, it might an implantable smart technology might change you because you are constantly worried about how and whether it might change you. It’s the end of my story. But this is not just a story. Currently, scientists are experimenting with the way that non-human animals can be humanised by genetically editing them. This is because there are not enough human organs for transplantation and the probabilities are there will never be enough. Today we do actually use bioprosethetics – small parts of animal from pigs or cows to replace human heart valves but they have to be replaced after 15 years – or not as long as mechanical ones.   And they are specially treated to remove any possible viruses. The mechanical heart valves often tick – like a clock. And can be very annoying. Smarter machines such as implantable cardiac defibrillators that deliver actual shocks to stop person’s heart going into a fatal rhythm can also cause some individuals to feel differently – to feel more anxious but also isolated. They become more human not less.

So if these are real life stories where could you go if you were asked to make a film about using animals and machines to replace and repair the body? Who would receive such biotechnologies? What would it feel like? Would your main character get both animal and mechanical parts inside and out? Would they still be the same person or not? Would other people still speak to them or avoid them? Would they be bullied or would they be the bully?   Would they have octopus tentacles coming out of their head, a bionic third eye and partly automated, partly real eagle wings? Only you all can make this film. And its only limited by your vision.

Gill Haddow

The story about In-valid Youth began back in the summer of 2015. The Wellcome Trust has an enhancement award for some of its funded projects.  The enhancement is for public engagement and I was keen to do something with members of the public about ideas around changing the human body with non-human animals and auto-biotechnologies.  Eventually Kate Wimpress director of the North Edinburgh Arts project, Ali Grant, development worker from Muirhouse Youth Development group and Allison Worth, Patient and Public involvement Advisor at the Edinburgh Clinical Trials Research Facility thought that it would be a brilliant idea to engage the young people of Muirhouse (an area in Edinburgh that has experienced chronic deprivation) about their views of using biotechnologies to repair and replace the human body.

The idea is a spin-off from the Wellcome Trust funded University Award ‘Animal, Mechanical and Me; The Search for Replaceable Hearts’ that is based on exploring patient experiences of implantable cardiac devices and public views of using non-human animals and auto-biotechnologies to repair and replace the body.   The key to the Muirhouse film project is that the young people, supported by artists and academics, take control.  We are provisionally calling it ‘In-valid You/th’ and we hope it will allow a handful of teenagers to make their own 8 minute film about the fictional experiences of young people whose bodies have underwent repair or replacement with prosthetics or implants http://www.bbc.co.uk/news/uk-scotland-34015893 (for example, Josh Cathcart, aged nine years recently became the youngest recipient of a ‘Touch Bionic’ hand).

Creating a film about individuals who may have faced stigma due to apparent physical disadvantages, may resonate with the structural constraints of living in Muirhouse. The chronic economic deprivation of the Muirhouse lived environment requires repair, replacement and regeneration in a similar way that some young people’s bodies do.  The views of the ‘digital citizens’ born in the internet age, are key to exploring how future bionic technologies will be received, given current social and ethical issues about implanting devices and prosethetics.

The funding pitch we made stated:“The participant-actors will 1) benefit directly from learning about the film making process through the support of directors, animators and musicians and 2) gains to self-confidence through the completion and dissemination of the outcome and 3) by challenging themselves about stigma of physical difference creates opportunities to challenge others and their prejudices about health and wealth (e.g. the ‘undeserving poor’).”

Will we achieve this? Part of chronicling the journey is to see what we do achieve and how it is achieved as well as documenting the inevitable things that we could never have foreseen.  We have been funded by the Wellcome Trust for the next 18 months so here goes!

 

This is a blog that is going to document an interdisciplinary adventure into engaging young people through the medium of film-making about the social and ethical consequences of physical enhancement and augmentation. It is going to chronicle the journey of those who become involved in making the film about how it feels like to be ‘physically different’ by those who are defined by their age and ‘socio-economic difference’.

So what do you think it feels like to have a bionic head and tentacles for ears? Instead of eyes there are gills and hands have sticky tongues with a brain stimulator that allows the temporary ability to think faster? Over the next 18 months ‘The Chronicles of In-Valid Youth’ will present the challenges and progress that is made from concept to end-result.

In this blog the team, Ali and Allison, Cameron and Claudine, Patrick, Kate, Gill, Tirion, Graham, as well as some of the young people will document their thoughts in print, on film and in pictures.