Design Year 3

Interview with Marnie

Similar to Ashlyn, I was able to contact Marnie through Instagram. She was very forthcoming in sharing her experience and she emailed me back these answers which go into great detail of her experience with diabetes. What I find to be a regular occurence in the three responses I have received so far is the stigma attached to diabetes and how this can have such an impact. Spreading awareness and education about diabetes and the differences between type 1 and type 2 diabetes would lead to an understanding of diabetes and would eliminate this idea of shame and embarrassment. Hiding diabetes and diabetes technology can be dangerous and put diabetics at great risk, so not only is it dehumanising for the person but it is also unhealthy for them. I can completely understand why Marnie wants to spread awareness and her responses have certainly helped me, thank you Marnie!!

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

Hello! My Name is Marnie, and I have had Type 1 Diabetes for just over Seven years. I got diagnosed in September 2013, which was just after my 19^th Birthday.

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

I was given my official diagnosis whilst in Hospital after many months of feeling extremely unwell. I began experiencing the typical symptoms of Diabetes in March 2013, where I was turned away many times by my Doctor and my symptoms continuously overlooked. I attended my surgery many times over the months, requesting blood tests, second opinions, but my deteriorating health was put down to my age (Hormones/Growing etc.), pre-existing mental health issues and dehydration.

Around the 13^th September 2013, I had come home from a hair appointment and felt the worst I had done since experiencing my current symptoms. All I needed to do was sleep so that is what I did. I remember waking up to my Mum telling me that she was talking me to a nearby walk in centre, as she was extremely concerned. When I arrived at the centre, I was seen straight away by a doctor who urged me to go to hospital straight away. This was after a brief description of my symptoms, a Blood Glucose test and a Urine sample.

I arrived at my local Hospital within 1 hour. I only had to wait around 5 minutes before seeing the doctor who said that I needed to have many blood tests. I assumed I would have gone back to the waiting area, but instead I was taken to a High Dependency Ward where I was reunited with my mum. The doctor sat me down and explained that my life was going to be very different now. She said that they had my blood tests fast tracked, where they found extremely high levels of glucose confirming that I was now going to live with Type 1 diabetes.

Overall my experience was frustrating, emotional and unforgettable.

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

After a few days in Hospital, I was eventually introduced to a lovely nurse from the diabetes centre. She made me feel at ease as she explained more about type 1 diabetes, what my treatment would be and most importantly how to inject myself with insulin every day. I was given two types of insulin, needles, lancets, testing strips and a monitor to check my glucose. It was all quite overwhelming.

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

Luckily I knew a fair bit about diabetes as I went to school with friends who lived with the condition themselves. My great Grandad also had type 1 diabetes and I remember my Nan and Mum explaining in to me when I was younger. When I look back at what my understanding of diabetes was, compared to what it is now, it is extremely different. To know about a condition and to live with it do not compare what so ever.

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

I told the people who I was close too about my diagnosis, as it was for my own safety really. It definitely isn’t something I bring up straight away in a conversation, but the alarms from my pump and continuous glucose monitor are often a conversation started in themselves. Nowadays I am more open, as I am now more exposed to stigma and assumptions through people that are perhaps not educated on diabetes, therefore I now use social media to interact with other type 1s, but more importantly share my life living with the condition/spread awareness to eliminate stigma.

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

Over the last two years, I have lost all of my Hypoglycaemia awareness. When your blood glucose drops below 4mmol you would usually show symptoms, such as; dizziness, shaking, feeling hot and so on. This would naturally urge a person with diabetes to test their glucose and treat with sugar, glucose tablets as required. This is also the case when sleeping. A person experiencing hypoglycaemia would usually wake up, as your body would again, feel the typical symptoms.

Unfortunately for me, this is not the case. Because I no longer have my awareness I can no longer tell when my glucose is too low. I also have the issue where my glucose levels drop at an extreme rate. This causes me to completely black out, where I need assistance to bring my levels back to normal.

In recent months I have been given a Dexcom (continuous glucose monitor) and an Insulin Pump, where together they will sound alarms to notify me that my glucose levels are dropping, as well as cut off the supply of insulin to limit my hypoglycaemia attacks. The other amazing part about the Dexcom is I can also connect my Mum and my Boyfriend to the app where they can also be alarmed when I am experiencing Hypoglycaemia and can take action if they do not see a rise in my levels. (This piece of technology is extra helpful for me, as I live alone and could at any time be in danger. This definitely puts my mind at ease knowing I am constantly being monitored)

Since using these two pieces of technology, I have noticed my glucose levels to be more in an ideal range. Unfortunately, I still experience low glucose episodes leading to blackouts, but this is something myself and my Nurse are working on.

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

A glucose monitoring system and insulin pump far more discreet than those already on the market. The ones I use are very visible, difficult to hide and the tubing is quite inconvenient. I have found that since wearing diabetes technology, my body confidence has decreased rapidly and my anxiety levels have risen. I believe this is because I find it difficult to hide the equipment and when I want to wear anything tight, (an evening dress for example) I feel all people will take notice of is the wires poking out.

Article Reference: ‘Why Disgust Matters’

Curtis, Valerie. “Why Disgust Matters.” Philosophical Transactions: Biological Sciences, vol. 366, no. 1583, 2011, pp. 3478–3490. JSTOR, http://www.jstor.org/stable/23035750. Accessed 12 Jan. 2021.

P.2. ‘Disgust is used and abused in society, both a force for social cohesion and a cause of prejudice and stigma’

P.2. ‘Disgust impacts on many aspects of our lives, from our individual, domestic, everyday hygiene habits, through our moral choices as members of society, to public policy on issues such as health, justice, social exclusion and warfare.’

P.3. ‘hygienic behaviour with respect to disgust elicitors plays an essential role in the prevention of infect’

P.6. ‘Disgust is a strong and visceral emotion that can arouse powerful affective and behavioural responses.’

P.7. ‘Overactive disgust responses may play a role in some forms of social phobia’

P.7. ‘Blood-injection-injury phobia is characterized by extreme aversion to the sight of blood, injuries, or surgical procedures including injections. Sufferers have higher disgust sensitivity, rate disgusting images as more disgusting than controls and display stronger facial expressions of disgust.’

P.8. ‘example. So as not to be punished or excluded, individuals self-police their own hygiene and social contact behaviour, sometimes turning disgust on themselves (shame).’

P.8. ‘Because disgust is ‘strong magic’ that recognises an ability to contaminate by association, it is used to marginalise outsiders to groups (stigmatization).’

P.8. ‘There is much evidence that humans tend to shun other individuals that display signs of disease’

P.8. ‘. Individuals perceived to have disabilities or disfigurements automatically activate disease-relevant cognitions, even when perceivers are explicitly aware that these individuals do not harbour contagious’

Article Reference ‘Evasion of the Body Snatchers’ (Chapter 1 of ‘Don’t Look, Don’t Touch)

P.4. ‘All of the things that people find revolting seemed to have some sort of role to play in the transmission of infectious disease.’

P.6. ‘Those of our distant ancestors who tended to avoid faeces, nasal mucus, and bad smelling food did better on average in the reproduction lottery: they were healthier, mated more often, brought up more children to sexual maturity, and hence had more grandchildren. And these grandchildren, the descendants of the disgusted, were more disgustable themselves—and so on, till the present day, and us.’

P.7. ‘Disgust is a voice in our heads, the voice of our ancestors telling us to stay away from what might be bad for us’

P.16. ‘Humans that deal in wastes become symbolically impure; these castes then have to be kept apart, for fear of social disorder.’

Article Reference: ‘The Handy Diabetes Answer Book’ Credo Reference

‘It is thought that there are several reasons for the development of type 1 diabetes, but most of them are debated or still need to be studied.’

‘According to research and statistics, the body’s autoimmune system can attack a person’s beta cells over months or even years, eventually resulting in type 1 diabetes.’

‘A person with type 1 diabetes will need to take insulin for the rest of his or her life.’

Article Reference: ‘Hacking the Feminist Body’ by Laura Forlano

P.1. ‘these technologies reconfigure definitions around what it means to be human’

P.1. ‘I’m interested in the ways in which these socio-technical systems shape even the most mundane details of everyday life — their politics, materialities and aesthetics — as well as what it means to be human in this context.’

P.2. ‘the digital shapes physical bodies, objects and environments.’

P.2. ‘test strips, needles, insulin vials, canula, tubes, blood tests, doctors visits, glucose tablets, lancets, food scales, cables, AAA batteries, carrying cases, measuring cups, adhesive surfaces, sensors, receivers, transmitters, lab visits, Excel spreadsheets, conversion rates, charts, alcohol swabs.’

P.2. ‘diabetics can been understood as a kind of cyborg—a hybrid of flesh, bones and blood along with sensors, tubes and external devices.’

P.3. ‘It is a process of becoming a different person with new rituals and practices over a long period of time.’

P.4. ‘living with it requires the creation of new sets of everyday rituals and practices. Not only eating but also getting dressed, showering, exercising, sleeping, having sex. Each of these requires a certain negotiation with the device related to the context of use. What does it want to wear today? Where will it be seen/unseen? How long can I go without it? For example, taking a shower requires that one unscrew the cap that is fixed to the body and leave it on the counter before stepping into the water.’

P.4. ‘The interaction with the body is fairly clinical in that one is prevented from seeing the needles by caps, covers and insertion devices, which obscure their view. But, occasionally there are reminders – mainly bruises and blood — that the interface between the body and the device is a living surface.’

P.5. ‘Choosing to adopt a medical device for the management of chronic disease challenges,
contradicts, extends and expands notions of what it means to be human.’

P.5. ‘It becomes part of you and is literally attached in a way that your cell phone will never be.’

P.6. ‘was conscripted into a capitalist cycle of consumption of the various parts – tubes, needles, sensors, little plastic vials’

P.7. ‘managing chronic disease requires a great deal of invisible labor, for which I will never be compensated’

P.7. It requires mathematical skills that are distributed across multiple devices: glucose meters, continuous monitoring systems, kitchen scales, operating systems and smart phone applications to name just a few. As such, the human must work in tandem with the non-human devices in order to delegate (Latour, 1992) the various calculations and labor associated with everyday activities such as eating and exercising. ‘

P.7. It also requires significant coordination and organization skills – making
sure that you have all of the necessary parts of the system when you are traveling, making
sure that you have enough of each component to last for the number of days that you will
be traveling, making sure that you order and pick up your prescriptions on time. If only
one component is missing, the system will fail to function properly.

p.7. As usual, there was no sanitary surface on which to put the supplies, just a grimy-looking white porcelain sink.’ This is something I wouldn’t even think about and yet another example of the social model of disability. We do not account for disabilities and yet again it becomes an afterthought when designing social spaces.

P.7. ‘it is not always clear whether the device is taking care of me or whether I am taking care of the device.’

P.8. Like hacking, the invisible, unpaid and volunteer labor that is needed to manage chronic disease discriminates. It favors those with better educations and higher incomes,’

P.8. ‘Unlike other technological systems, the interaction with the human body itself is what produces the system’s lack of accuracy in a very observable way.’

P.9. ‘It is constantly shaping my everyday interactions I am shaping it’

Article Reference: ‘Journal of Diabetes Science and Technology’ by SAGE

Heinemann, L. (2021) ‘Expenditure for the Development of a Medical Device: Much Higher Than Commonly Assumed’, Journal of Diabetes Science and Technology, 15(1), pp. 3–5. doi: 10.1177/1932296820986016.

P.1. ‘the development of a new medical device has (highly) complex requirements; the path from an idea to a finished product that a patient with diabetes (PwD) can use in everyday life is rocky and often ends nowhere.’ medical devices cannot be made that easily or quickly. Have to find new alternatives to living with the device or a change in the status quo

P.2. ‘PwD are usually not engineers; they should be able to operate such systems safely under quite different and often not optimal environmental conditions, etc. We often forget that the “simple” operation of a smartphone requires extremely complex and sophisticated technology in the background for implementation.’ We often relate technology to smart phones, that are easy to use and very much user-friendly but we often forget that these devices are made extremely sophisticatedly and are very complex.

P.2. ‘Just because you hold the best/most beautiful/most innovative product in your hands after all the effort and years of intensive work, this does not guarantee success in the market. No diabetologist who is unfamiliar with a new product is willing to use it just like that.’

P.2. ‘complex the requirements are in our modern health care systems that are connected with the development of medical devices.’

Book Reference: ‘Body in Culture, Technology and Society’ by Chris Shilling

Shilling, C., 2005. The body in culture, technology and society, London: SAGE.

P.28. ‘The physical capacities and experiences of individuals, however, suggests that the body plays an independent and essential causal role in the formation of societal phenomena’.

p.28. ‘tHE BODY IS AN IMPORTANT SOURCE OF SOCIETY AS A RESULT OF THOSE CAPACITIES AND DISPOSITIONS WHICH ENABLE IT TO TRANSCEND ITS NATURAL STATE AND CREATE A SOCIAL ENVIRONMENT’

P.61. Bordeieu: ‘The body is in the social world but the social world is in the body… the embodied actor is both indelibly shaped by, and an active reproducer of, society.’

P.64. ‘The body is no longer an ‘extrinsic “given”, functioning outside the internally referential systems of modernity’, but has become ‘drawn into the reflexive organization of social life’ to the extent that we are ‘responsible for the design of our own bodies.’

Interview with Ashlyn

After finding it hard to get in contact with people who have diabetes by word of mouth (blaming this on COVID), I decided to use the seemingly most used platform today to see how I might be able to find people willing to talk about their experiences with diabetes. The first person who was able to share their experience with me was Ashlyn. I messaged her asking if she might be able to answer a few questions for a design related project and she was kindly willing to help. here are the questions (in bold) and her answers (in italic).

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

My name is Ashlyn, I am a physical Therapist Assistant, and I have been a diabetic for 5 years.

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

My diagnosis experience was almost relieving because I had been sick for so long. It was a whirlwind of information though, so it was very overwhelming.

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

I was put through a week of diabetes education and immediately given a continuous glucose monitor at my diagnosis. I was started on a pump 6 months later.

When you were told you had diabetes, did you know what it was? Did you know anyone else with diabetes?

I knew what diabetes was because I was going into the medical field. I knew people with diabetes but didn’t have any close friends with it.

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

I was quiet for the first month but then became very open about it. I use it as a platform now and tell everyone I can.

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

My main struggle is stigma and educating those around me. Many people think technology is a cure and don’t realise how much work diabetes still requires. Diabetes is tough to live with but the lack of understanding makes it harder.

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

My ideal diabetes technology would be an all in one CGM and pump that is tubeless and automated.

I think what was most interesting about these answers is where she said ‘many people think technology is a cure’. I think this speaks a lot of truth because not only does it still require a lot of involvement in counting carbs, injections and monitoring levels, with or without an insulin pen or a pump, but i think the technology also works as a material signifier of a ‘cure’. For example, we look at an amputee and see someone who is broken, but when we see an amputee with a prosthetic, we see them as ‘fixed’. However, not only do people not always want to be ‘fixed’, no number of sophisticated technology can ‘fix someone’, physically or emotionally. This is why I believe, there is still much work to be done in terms of a re-education of diabetes and what it means to be diabetic and how technology needs to be rethought and understood properly.

Liquid Latex

After seeing my flatmate use liquid latex to make scar look-alikes for her uni project, I became interested in this material and how I might be able to use it for my project.

For the sake of trying out the material and getting to grips with how it works, I started brushing it on to my hand, making more and more layers, leaving short intervals for it to dry. As it took quite long to dry, i started to add tissue paper as I understood this strengthened it and made it more rigid. As it was becoming bigger and bigger I had the idea to add what looked like really prominent bones which made the hand look really old and wrinkly, with the help of toilet tissue that had a pattern on it. I was able to peel the latex off really easily but it left me with a big chunk of this wrinkly latex. When i put it on now, it just sits on top of my hand and doesn’t form it’s previous tight position on my hand.

An artificial replica of skin seems almost like an extension, like a prosthetic and something you can use to hide. This would be sort of doing the opposite of what my flatmate is doing; not creating scars but trying to hide them or similarly, trying to hide other forms of ‘scars’. In the case of my project which focuses mainly on type 1 diabetes, I have the idea that maybe using this material, i can look at ways to hiding Continuous Glucose Monitors (CGMs). As they’re very discreet, I think the addition of latex would make it look like a smooth bump, especially if you did it carefully and built up smooth layers. The question would then be how to be able to put it back on again. But, this could be figured out later.

Book Reference: ‘One Dimensional Man’ by Herbert Marcuse

P.6. ‘The brute fact that the machine’s physical (only physical?) power surpasses that of the individual, and of any particular group of individuals, makes the machine the most effective political instrument in any society whose basic organization is that of the machine process.’ the machine is the most effective political instrument.

P.6. ‘But the political trend may be reversed; essentially the power of the machine is only the stored-up and projected power of man.’ But, its only a built up and stored version of man. Its a reflection of man

P.11. ‘Can one really distinguish between the mass media as instruments of information and entertainment, and as agents of manipulation and indoctrination?’ Hard to distinguish between entertainment and information versus manipulation and political power being used against you

P.11. ‘the extent to which this civilization transforms the object world into an extension of man’s mind and body makes the very notion of alienation questionable.’ We don’t know what it means to be organic anymore. We don’t know what is true and what is false, were so extended, we don’t know where humans begin and where technology and objects end.

P.11. ‘The people recognize themselves in their commodities; they find their soul in their automobile, hi-fi set, split-level home, kitchen equipment. The very mechanism which ties the individual to his society has changed, and social control is anchored in the new needs which it has produced.’ Identity! We identify ourselves with the technology we use

P.30. ‘The machine process in the technological universe breaks the innermost privacy of freedom and joins sexuality and labor in one unconscious, rhythmic automatism-a process which parallels the assimilation of jobs.’

P.158. ‘However, when technics becomes the universal form of material production, it circumscribes an entire culture; it projects a historical totality-a “world.”