Day in the life

To end ‘superbetic’, I felt like I should have outlined what I was planning to do on the practice side of things now that the context side of things was coming to an end. Though I didn’t have it clear in my mind at exactly what I would be doing, I knew the sort of route I would take after delving into specific themes and issues in the piece of writing. After looking at what it means to live alongside biotechnology for people with diabetes, and the struggles there are in terms of the work that is done for diabetes, I knew I wanted to look at the overlaps between puppetry, animatronics and biotechnology. This is what I wrote for my end statement;

‘After speculating on the issues regarding disability and more specifically, diabetes, I’ve made it a focus of mine to find the crossovers between animatronics and biotechnology. In order to give power back to the people, we should see the technology as something to be celebrated as an extension of the body, not a ‘problematic marker’ (Boys, 2014. P.17) of shame and stigma. Animation and puppetry give life to the lifeless, similar to how biotechnology works. Where animation and puppetry usually serve light entertainment and biotechnology serve to fill the gap in the biological needs of humans, it could be interesting to see how one could inform the other. Just as glasses have become a signifier of fashion, and prosthetics have become augment-able, I believe there is a gap in which the broken pancreas could be seen, not as something that has failed, but something that could be rigged and re-thought, eliminating stigma with the chance to re-write the representation of diabetes.’

In order to be the ‘puppeteer’ of your body, this calls for control over it. In the case of diabetes, it is control over your carbohydrates, blood sugars and insulin. I wanted to find ways in which I could control my body and analyse what goes on inside. For a person who is diagnosed with type 1 diabetes later on in their life, controlling their blood sugars and injecting is something that is completely new to them, but they must do it every day for the rest of their lives while everyone else (without diabetes) does not have to think about it whatsoever. This must feel really unfair.

I started to think about ways in which I could record the fluctuations in my body and in my everyday life to see whether it could hacked / augmented….

Notes from sketchbook

Eating, drinking, growth of nails & hair and weight seemed to be the obvious choices to track fluctuations but they all came with sub-categories. E.g. with eating, how would I track what I ate; in terms of vitamins and minerals, in terms of how many grams of food, in terms of calories, or do I try counting carbs? But I knew I wanted to do more than this to track whether one element of my life can guide another. Food, excercise and weight seems like an easy route to take here but still, I wanted to do something a little different.

I gave myself a 24hr period to track everything I did.

Day in the life: 30.01.2021

My idea was to track everything and i thought it would leave me with a clear overview of my whole day; what I ate, what I drank, what I did. But, as it’s clear to see, my diary consisted mainly of the music that I was listening to all day. I was at my desk animating, and listening to music for the majority of the day.

I wrote down every song i listened to from the time I woke up to the time I went to bed, this was the most detailed part of the 24hr diary, so it was only fair to see what I could do with this data, alongside everything else I wrote down.

Results animation idea

My initial idea on how to present this data was to make it into an animation with different elements moving during the day. E.g. an outline of a circle would represent my movements, when the circle got bigger, I would be moving further away from my desk and when it was at it’s smallest, i’d be at my desk. Other outlines would include the amount of food I was eating, the amount of liquid I was consuming and anything else I could record.

Interview with Raquel

Your name, your occupation,  and for how long you’ve been a diabetic?

‘Raquel, Marketing / social media manager T1d for 19 years.’

When were you told you had diabetes and what was that experience like?

‘I was 5 years old. I do not remeber much except being told in the hospital that i would need multiple injections per day for the rest of my life. I was terrified of needles at the time and this was definitely not a fun few days!’

What assistance / information / technology were you given for your diabetes?

‘At the time I was sent home doing insulin injections and told to eat 45 carbs per meal and two 15 carb snacks per day. 3 years later i went onto an insulin pump and then as a sophomore in college got a continuous glucose monitor.’

When you were told you had diabetes, did you know what it was / did you know anybody else with diabetes?

‘I had a distant cousin who had it. Otherwise I did not know anyone!’

Did you tell people you had it? Do you tell people now that you have it or is it something you keep hidden?

‘It is hard to remember back that far but most of my classmates at the time knew about it. I often had to eat snacks in class or go to the nurse’s office at school. Now I tell almost everyone about it. The diabetes community is a huge part of my life and I often wear my devices in visible locations.’

What are the main struggles of living with diabetes? And what part does the technology play in this?

‘It is hard living with such a hard disease that people can’t see. On the outside I often look fine but am struggling with so much internally. It is hard having to manage blood 24/7 and how unpredictable it can all be. Technology is great for the most part but constant beeping from CGM’s or pump errors can get frustrating and annoying. Technology does not always work perfectly so that can be difficult to deal with at times.’

If you could design your own diabetes technology, what would it look like?

‘Hmm not too sure. Probably a smaller insulin pump that acted as a cgm at the same time rather than having two seperate devices. I love the way my pump looks (tandem Tslim). It is sleek and thin… doesn’t get in the way much at all.’

Article Reference: ‘The obliteration of life: depersonalization and disembodiment in the terabyte era’

‘On the one hand, life in general and human life in particular are literally “obliterated”: dissolved into streams of letters and symbols’ p.70.

‘Living beings are emptied as it were, as the “flesh of life” is digitalized.’

‘Biology is not destiny, but changeable, open to optimization: a constructive project, fueled by technoscientific promises.’ P.85.

while individuals are called upon to engineer their own fate,’ P.85.

the human subject dissolves into the symbolic order of electronic networks. P.85.

Article reference: ‘Marx and the Machine’

‘Marx argued that in the most significant complex of technical changes of his time, the coming of large scale mechanised production, social relations molded technology, rather than vice versa’ p.473

“the historic mode of production, i.e. the form of society, is determined by the development of the productive forces, i.e. the development technology.” P.475.

” Nor does it suffice to differentiate the tool from the machine on the basis of the power source (human in the case of the former, nonhuman in the case of the latter)’ Technology is not a tool according to marx. It doesn’t matter who uses it; human or non human. It is not a tool p.486

“The machine … is a mechanism that, after being set in motion, performs with its tools the same operations as the worker formerly did with similar tools.”  (marx) p.486.

‘By undermining the position of key groups of skilled workers, by making possible the drawing of new sectors into the labor market, by threatening and generating unemployment,’ p.487.

Article Reference: ‘The Ends of the Body as Pedagogic Possibility’ by Tanya Titchkosky

Tanya Titchkosky (2012) The Ends of the Body as Pedagogic
Possibility, Review of Education, Pedagogy, and Cultural Studies, 34:3-4, 82-93, DOI:
10.1080/10714413.2012.686851

‘Disability-exclusion is normalized through an array of cultural processes that
make ‘‘disability’’ represent limit without possibility’ P.82

The influence of social stigma on diabetes self management amongst Maltese individuals with diabetes’

Buttigieg, N., Ersser, S. & Cowdell, F., 2017. The influence of social stigma on diabetes self-management amongst Maltese individuals with diabetes. The European Journal of Public Health, 27(suppl3), pp.30–30.

P.30

‘In fact, the burden of stigma of a particular disease, is sometimes noted to be far greater than that caused by the disease itself.’

‘sought to limit their disclosure of their condition to others.’

‘It is deeply unsettling and may disrupt self management through the coping mechanism of secrecy. There is need for campaigns to minimise social stigma and for patients to be helped to manage stigma encountered in the community and the workplace.’

Article Reference:’Diabetes stigma and its association with diabetes outcomes: a cross-sectional study of adults with type 1 diabetes’ by SJPD

P.855. ‘Stigma entails adverse social judgements about enduring features of identity’ = Definition of stigma

p.855. ‘While the emotional and physical aspects of diabetes are well described, [3], the social aspects of diabetes remain under-researched.’

p.856. ‘A recent narrative review found that people with type 1 diabetes reported stigma by association with type 2 diabetes, blame, negative judgements and stereotyping, exclusion, rejection, and discrimination’

p.860. ‘to reduce diabetes stigma, for instance, increasing public knowledge about the causes of diabetes and increased education to people with diabetes about its management [16]. it is now time to explore and pursue different avenues of interventions’

p.860. ‘While no cure or preventive measure is currently available for type 1 diabetes, the socially produced adverse reactions to type 1 diabetes such as stigma are potentially avoidable.’

p.860. ‘the importance of language used in interactions with and about people with diabetes is increasingly recognised.’

Book Reference: ‘Posthuman’ by Rosi Braidotti

Rosi Braidotti 2013 Polity Press Cambridge

p.40. ‘There is a posthuman agreement that contemporary science and biotechnologies affect the very fibre and structure of the living and have altered dramatically our understanding of what counts as the basic frame of reference for the human today.’

p.90. ‘We can therefore safely start from the assumption that cyborgs are the dominant social and cultural formations that are active throughout the social fabric, with many economic and political implications

Article Reference: ‘Marketing the Prosthesis: Supercrip and Superhuman Narratives in Contemporary Cultural Representations’ by Chia Wei Fahn

Received: 24 February 2020; Accepted: 7 July 2020; Published: 10 July 2020

file:///Users/emily/Downloads/philosophies-05-00011.pdf

Accessed: 19/01/2021

© 2020 by the author. Licensee MDPI, Basel, Switzerland. This article is an open access
article distributed under the terms and conditions of the Creative Commons Attribution
(CC BY) license (http://creativecommons.org/licenses/by/4.0/).

‘With all these tools at our disposal, why is it that the disabled have yet to reap the rewards?’ p.1

‘Human bodies are now seen by some commentators as “machines to be fine-tuned and perfected through add-ons,” as the body is continuously augmented and its capabilities enhanced’ p.1.

‘biotechnology has led to a most significant shift in body politics that views the body as a network or assemblage that is constantly evolving with technology.’ P.1.

‘prosthetics have become a corporeal extension that empowers the disabled body, allowing the human body to transcend boundaries and limitations’ p.2

‘a posthuman approach to disability recognizes a new ethics of the body that is embodied
in “the conceptual edges between ‘the human’ and ‘the posthuman,’ the organic and the mechanic,
the evolutionary and the postevolutionary, and flesh and its accompanying technologies”’
p.2.

‘I believe the disabled body represents a versatile embodiment of these conceptual edges and is most
reflective of social change.’
p.2.

’empowering disabled bodies that focuses on the bionic industry.’ p.2.

‘the disabled body is empowered through prosthetic enhancement and cultural representations.’ p.2.

‘disability becomes super-ability’ p.2.

‘Rosi Braidotti’s The Posthuman (2013). Braidotti asserted that disability studies “combine
the critique of normative bodily models with the advocacy of new, creative models of embodiment,”
arming the disabled body as an open, embodied site where technology, corporeality, and sociology
interact”
p.3.

‘Disability disarms and disrupts the normative assumptions about what it means to be human; it extends and expands into perspectives that look armatively towards alternative modes of embodiment.’ p.3.

‘revealing the low expectations from normalized society’ p.6.

’embodiment of lack, but of possibility’ p.6.

‘Advances in prosthetics and assistive technology further transformed the supercrip narrative from overcoming physical trials to sensationalizing the technological superhuman [37]. The rapid change in the lived-in reality of disability is reflecte in supercrip representations embodying messages of power and interdependency, as the supercrip “amazes and inspires the viewer by performing feats that the nondisabled viewer cannot imagine doing” [38] (p. 71). These representations embody possible futures in posthuman development and demonstrate paradigm shifts in the representations of disability.’ p.6.

‘the human becomes an assemblage of parts, conceived of in terms of a machine that can be
repaired, and redesigned”
p.6.

‘The supercrip narrative, once stigmatizing, has become a marketing vehicle of education
and product advertising, as well as empowerment for the prosthetically enhanced, with dierently constructed bodies striving to break the constraints of a binary dis/ability discourse’
p.9.

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