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Book Reference: ‘A Manifesto for Cyborgs: Technology, and Socialist Feminism in the 1980s’ by Donna Harraway

P.69. ‘Late twentieth century machines have made thoroughly ambiguous the difference between natural and artificial, mind and body, self-developing and externally-designed, and many other distinctions that used to apply to organisms and machines.’ It’s so hard to tell the difference between cyborg and organic human – whatever ‘cyborg’ is.

P.70. ‘Modern machines are quintessentially microelectronic devices : they are everywhere and they are invisible.’

P.71. ‘The ubiquity and invisibility of cyborgs is precisely why these sunshine-belt machines are so deadly.’

P.72. ‘From another perspective, a cyborg world might be about lived social and bodily realities in which people are not afraid of their joint kinship with animals and machines, not afraid of permanently partial identities and contradictory standpoints.’

P.82. ‘Communications technologies and biotechnics are the crucial tools recrafting our bodies.’

P.97. ‘High tech culture challenges these dualisms in intriguing ways. It is not clear who makes and who is made in the relation between human and machine. It is not clear what is mind and what body in machines that resolve into coding practices.’

P.97. ‘There is no fundamental, ontological separation in our formal knowledge of machine and organism, of technical and organic.’

P.97. ‘Perhaps paraplegics and other severely handicapped people can (and sometimes do) have the most intense experiences of complex hybridisation with other communication devices.’

P.97. ‘Why should our bodies end at the skin, or include at best other beings encapsulated by skin? From the seventeenth century till now, machines could be animated – given ghostly souls to make them speak or move or to account for their orderly development and mental capacities. Or organisms could mechanised – reduced to body understood as resource of mind. These machine / organism relationships are obsolete, unnecessary. For us, in imagination and in other practice, machines can be prosthetic devices, intimate components, friendly selves.’


Book Reference: ‘Doing Disability Differently’ by Jos Boys

Routledge. 2014. Oxon

P.5. ‘Starting from disability, I suggest, also enables critical and creative engagement with these wider concerns, informing how we work towards making better sense of the world, so that we can act towards improving it.’ Effects: how to improve the situation for disabled people.

P.6. On the topic of disability and writing about disability; ‘Writing as a non-disabled person, the claim is not to speak for disabled people, but to take the responsibility for how abled people perpetuate the marginalisation of the disabled, to refuse to ignore that situation and to be part of a movement for change.’

P.12. Medical vs social model. ‘Many disabled people will say their biggest problem is not so much the fact of impairment itself, as the disabiling attitudes and barriers that come from other people only seeing that impairment.’

P.12. ‘Impairment, then, is not a neutral or objective fact; it is made and remade through everyday feelings, experiences and encounters.’ Good for studio project: it’s about encounters.

P.13. ‘Only seeing the disability dehumanises disabled people; they are voided of any ‘normal’ characteristics or personality traits.’ On seeing disability. Is it easier when you can see it?

P.15. ‘One of the odder aspects of these disabling stereotypes is that abled people tend to view the devices that support disabled people as problematic rather than valuable.’ Are devices problematic? Not the device that’s the problem, it’s how we see devices as non-human. E.g prosthetic legs work perfectly, and the restore ‘normality.’ That is a closed-looped system.

P.17. ‘Extending the body’s abilities are – in the case of disabled equipment – seen as problematic markers rather than valued mechanisms of bodily augmentation.’ Car parks, roads for cars. What about wheelchairs? They’re smaller, why isn’t it more acceptable?

P.18. ‘As well as assuming that the world divides non-problematically into the abled-bodied and the disabled, many people also assume that having a disability is obvious, that it can be ‘read’ from the bodies of those who are ‘different’ through either their appearance or their actions. In fact, the diversity of our bodies makes this much more partial, difficult and shifting. People may be born with an impairment, or develop one later in life; it might be chronic, variable or short term. Many people may show no obvious physical symptoms or can keep their exhaustion or medication ‘hidden’ from others.’ Can’t always see it. Look for visual cues. Use this when talking about tech.

P.18. Good quote for superbetic representation. ‘Disabled people must also develop strategies for dealing with simplistic stereotypes about what disability should look like, and how it should be enacted.’

P.20. ‘As I said at the beginning of this chapter, it is not about living the stereotypes, but relating to, engaging with and living in response to these stereotypes.’ Good quote for stereotypes.

P.20. ‘Many disability theorists, writers and activists have been re exploring how to re-integrate the personal experiences of impairment with the public campaigns demanding improved services and environments for disabled people.’ This is more current than the social model of disability. This has become more important according to Jos Boys and others.

P.21. ‘What we need to do is to find a way to integrate impairment into our whole experience and sense of ourselves for the sake of our own physical and emotional well-being and subsequently for our individual and collective capacity to work against disability.’ This is the new goal.

P.21. ‘Explicitly recognising the experiences of impairment and illness as a normal part of life means that we urgently need to explore how to better engage with dis/ability, that is to simultaneously take notice of the many strategies and narratives of disabled people themselves, and to engage more critically with the unspoken assumptions behind what constitutes being abled.’ The goal: to normalise and recognise impairments. Try to aid and engage with critically and call for a redesign in architecture, material and product design.

P.23. ‘Stereotypes of disability can distort our understanding of the diversity and complexity of disabled people’s lives and make invisible the continuous entanglements between disability and ability.’ This is what stereotypes do.

P.27. ‘A particular disabled person can come to stand for / conform to a whole category of medical impairment, such that the rich experiences, responses and strategies of different disabled people to their material surroundings are flattened into the ‘single dimensional’.

P.27. ‘Both the concepts of accessibility and of inclusive design can unintentionally imply that disability is ‘fixed’ and ahistorical category where all the limitations of different impairments can be listed accurately and completely and then resolved ‘straightforwardly’ through design.’ It’s single dimensional. We must look at individuals’ disability and work outwards.

Book to read: The question of access; disability, space and meaning. Titchkosky.

P.58. ‘As I have said before, what it allows us to notice is the work embedded in making and remaking everyday life.’ Look at specific actions and every day activities. Ethnomethodology

P.131. ‘Another route to mapping disability differently is through engaging with disabled people’s own creative interpretations of the world, precisely operating at, playing with, and subverting this ‘mediation of heterogeneous materialities and practices.’ Individual’s creative interpretation is so important.

P.159. ‘Starting from disability means not imposing assumptions about what disabled people are like, or want, but as already said, taking notice of the diversity of narratives and strategies.’ Don’t impose assumptions. Must be grounded in research.

P.183. ‘The problem for ‘inventors’ is to design a non human character that delegates for humans, without demanding special or unexpected skills of it’s human users.’ That’s the design goal.

P.191. ‘As noted in the introduction, starting from disability does not lead to universal or simple design solutions.’

P.191. ‘In fact, in many ways, starting from dis/ability and a critical and creative engagement with everyday social and spatial practices is just like all the other ‘normal’ architectural design processes: operating exactly in the complex, messy and often contradictory spaces of our diverse and varying lives with others, artefacts, and material form.’ You’re not going to find a simple design solution.

Interview with Tim

Tim: ‘Hi my name’s Tim. I live in London, i’m 26 years old. I’m a type 1 diabetic and I have been for the last 9 years.’

Me: ‘Can you tell us about the time when you were first told you had diabetes? What was that experience like?’

‘So it was in 2011 and all I remember. Oh come on let’s not do this.’

Tim gets like this, I thought beforehand he wouldn’t do it at all. His diabetes has always been a touchy subject in our family and it’s never an easy conversation to have. Over the years I learnt a lot about what it is and how to help him if he’s ever in trouble, e.g. how to use his pen, and what to give him if he needs glucose. My mum is really good with him but could be better. She spent a lot of time researching diabetes when he was first diagnosed and found out how best to aid him with it, what to feed him and what not to. I think if she reads this blog it would really help her know what to say, it’s helped me that’s for sure. My dad and my other brother don’t ever really ask Tim about it, maybe it’s because they feel they can’t or maybe they just don’t want to make Tim upset. I’ve come to realise that you need to ask Tim about it at the right time, while he’s doing something else. He’s quite fidgety and gets bored easily. This time we were on a walk, I’d been wanting to speak to him about it for ages and while we began the walk I asked if I could interview him before we both went back to London (we were at mum and dad’s for christmas). It was Tim who suggested we did it on the walk, this was a very good idea, he could just talk and walk, he wasn’t confined to a room or the questions, it was like a big conversation while walking, it was perfect timing. I’ve written this blog post exactly as the conversation went, i’m not leaving anything out, I think this informal interview style is a good method to take if I ever had the opportunity to interview more people with diabetes so I wan’t to record exactly how this one went.

‘Come on, start from the beginning. Okay do you want me to ask you the question again? So you’ve introduced yourself. Can you tell me about the first time when you were told you had diabetes? What was that experience like? Did you know what diabetes was before you had it?

‘So I had never really been introduced to it. We haven’t got it in the family at all and so it was a bit of a shock to me to get it and what I remember was in 2011, it was around christmas time I was drinking the usual as a child, the usual like coke and fizzy drinks and I didn’t have an appetite at all. And I would constantly be going to the loo and drinking and just feeling so thirsty and then later on I found out that that was a natural reaction of my body trying to flush out the sugars from my blood and obviously just by drinking sugary drinks that was just making it worse anyway. Then anyway one day probably after the new year i went into hospital and it was found out that my blood was completely poisoned with ketones and they had to keep me in hospital for 3 days in order to flush out the poison in my blood which had formed from just having insane amounts of sugar in my blood.’

‘So that was at christmas so then mum took you to the doctors and what did they say at the doctors?’

‘So the first time I went I remember, i sort of said to my dad, dad because i’ve looked it up on google i said dad i reckon i’m a diabetic and he said ‘no chance there’s no way that’s true’ and then we got to the doctors and the doctor, ran some tests and he just sort of told me to keep an eye on it but essentially he missed out on doing a urine test and he missed the fact that I was, I shouldn’t have really been like conscious, I should’ve been in a coma so yeah they basically completely missed the fact that I had these symptoms so it wasn’t until a week later after that that I went back in and they ran the proper tests and then they sent me straight to A&E.’

And what happened in A&E? Didn’t they say that you were pretty critical, like you were really really not in a good state?

‘Yeah so like i’d been losing weight I remember that much and I was quite pale and I was really thin because I wasn’t eating and you can imagine your blood being toxic and your uriung being toxic that you’rejust feeling like crap, looking like crap and so when I got into hospital the doctor had phoned ahead and they pretty much put me straight into an intensive care unit.

We got a bit cut off here because we were on a really muddy walk and with my parents ahead of us so there might be quite a few gaps where either we needed to get past the mud or we needed to distance from my parents to talk properly.

They sent me to an intensive care ward, mum stayed with me I don’t think that I was in such a bad way that it was life-threatening but i remember about like 10 different specialist nurses came to visit me because they’d never seen someone alive with such a high blood sugar. I think you’re meant to have a blood sugar level between 4 and 7 millemolecules; that’s what your blood glucose level should be in the range and mine was about 45.

Bloody hell, I didn’t even know that

‘So i shouldn’t have even been awake. Imagine your muscles are being like, it’s like a car being pumped full of pure nitrous, your body is just, your muscles and everything, your brain and your eyes and everything is just getting so much sugar it’s just ripping your vessels apart.’

‘Good lord. So do you remember the first time when you felt like yourself again? Was that in hospital or was that when you came back?’

‘To be honest, this was the whole reason why everyone was amazed because I didn’t feel, like I should’ve been passed out, I shouldn’t have been awake and like I didn’t actually feel that bad. And that’s why the whole time we kind of, when I went in and misdiagnosed it it was like oh okay we’ll just go home, like i’d never actually felt particularly bad apart from the fact that I just couldn’t stop drinking. And then I remember they hooked me up to a drip and basically replaced all my blood with normal blood and then also hooked me up to a drip which i think they just flushed, somehow put more water in to your blood to dilute the blood because at the moment it was like this toxic sugary mess. And they just had to dilute it with water. I’m not exactly sure how it works but I was on a drip for about 3 days. And then at the end I just had to face the fact that I now had this mad disease that’s not uncommon but it’s quite uncommon to get it at that age. And like i’m about to start uni the following week and so I just had to face a lot of home truths.’

‘So what were you given to cope with it after leaving hospital? What did they give to you?’

‘Well they gave me basically a load of appointments to come back in because you would typically spend your childhood being trained up on how to manage your diabetes. For me, they just gave me the insulin pen essentially. They basically set me up with a specialist nurse who would sort of keep an eye on me and then they also organised a load of training sessions which i’ve never really liked becuase they require you to go to like hemel or wherever’

‘Bearing in mind, how many miles is that away from us?’

‘7, 8? But obviously that would require mum to take me in the car or i’d cycle and it would be a bit of a burden or i’d have to come back from Leicester uni to go. Basically everywhere i’ve been; I’ve lived in London, i’ve lived in Harpenden, i’ve lived in Leicester, I’ve had to set up with a new clinic, I’ve had to set up with a new hospital, set up with a new consultant, set up with a new nursing team, it’s just really difficult to continuously change. In terms of what they gave me, physically, as it’s the NHS and it’s the underfunded Hemel Hempstead hospital; a load of papers printed off from the internet about what diabetes is, how to manage it, how to count your carbs and match it to the insulin, what to do if you get a low blood sugar, what to do if you have a high blood sugar, a load of reading and a load of paper and to be honest, I just left there feeling quite scared. I remember just the next week, trying to manage your blood sugars and I was just so scared of going to sleep because obviously you need your blood sugars to be within a certain range and if they go low it can be dangerous so for the next week i just couldn’t sleep because I was worried, are my blood sugars okay like my pancreas was slowly dying, spurting out bits of insulin as it slowly just gave up on me so it was even harder to manage it than it is now because now I know that my pancreas is just completely, it doesn’t work. So back then I would have a lot of sleepless nights. But yeah they gave me stuff to buy like buy glucose tablets if you have a low blood sugar, they gave me my prescription, they gave me 2 types of insulin, they showed me how to prick my finger and test my blood, they showed me how to replace the needles and how to dispose of them in sharps boxes, and yeah quite an overwhelming amount of information, especially for an 18 year old who can’t even be arsed to read his own textbooks.’

‘Hahaha, okay so I guess my next question would be, did you feel alone with that? Did you feel like there was anybody who you could confide within? Did you know any other diabetic?’


‘Did you talk to anybody about it, to your family? Or even your doctors? Or was it just something that you coped with on your own?’

‘Yeah I mean like, I personally felt quite like, because it’s quite a modern thing, diabetes treatment, I was basically just like I shouldn’t be here, I should’ve died, and so and I still to this day feel a bit of a, well I feel i’m lucky to be alive and it does just make me feel different to everyone else and it makes me feel weaker because of the fact that you know i should’ve actually, technically died. It makes me feel a bit inferior to everyone so at uni especially I didn’t tell anyone and that is actually dangerous’

‘That is dangerous, why did you not tell anybody?’

‘When you go to uni, you’ve got all these new peers and you want to impress them and you want to just be like one of the cool kids or whatever, you just wanna fit in you don’t wanna have to you know, I didn’t really, it’s an untrendy thing to have being diabetic, it’s not a nice thing to have it’s like saying you’re, like i dunno, obese or you’ve got bowel problems like it’s not a thing you tell people even though it’s something that I couldn’t help. And I think if i’d have grown up with it, i’ have struggled less becuase i’d have found ways of telling people and people would, i’d be comfortable with it. It was a big change in my life and i really struggled telling people and I kept that up the whole way through uni even though you’re first year of uni is actually a very very dangerous time becuase you do a lot of drinking, you know you have a lot of booze, you do stupid stuff, and especially being so far away from my family who are pretty much other than my best mates from home, the only ones who knew about it.’

‘So how did you hide it from them becuase it can be half hidden; you can’t see it on you but you still have to inject multiple times a day, how did you hide that from them?’

‘Yeah so it was weird but it was quite like an inventive time in my life because I would have to come up with these ways of hiding it so if we’d be at uni, basically the main way of doing it is you combine it with saying you were going to the toilet.’

‘So you just always say you’re going to the toilet?’

‘Yeah, so I dunno, maybe I was just one of those kids that looked like they were going to the toilet quite a lot hahaha’

‘Terrible bowel problems!’

‘Another thing is maybe I didn’t control it well enough because I was trying to hide it and that’s one thing that I regret is kind of sidelining it a bit at uni, not treating it as important and doing other stuff but you can’t blame me because when you’re 18 and at uni, that’s what you wanna do, you don’t wanna have to ditch every one of your mates to go and deal with your medical condition, that’s not cool, that’s not what I wanted to do so I did just kind of ignore that.’

It was at this point where we were in the mud again so I stopped recording for a bit and we started talking about other stuff and Tim told me that the next bit was going to be really good. I could tell he was getting more and more into it as he was talking and going into greater detail. This next bit is really funny and sweet, it shows how his mindset had changed towards diabetes and shows a turning point in the way he saw himself. I was really happy to see that finally, it was him actually wanting to talk about it and share stories instead of it being too touchy a subject to talk about whatsoever.

‘So you’re at uni…’

‘Yeah so the next part is 2 pretty significant changes that I made and this is probably around 2nd year where i’d established a good group of mates and also had basically got a girlfriend so the first is my friend Nick, who i’d become really close with, we’d often go out and we’d spend a lot of time together and then one night I remember, probably halfway through second year, we got pissed and you know, we’d been bro-ing down and that sort of thing and I sort of said to him, ‘this is getting ridiculous now, i’ve actually got like a pretty significant thing to tell you but I feel like you’re the person who I can tell it too.’ And then he said ‘i’ve also got a pretty significant thing and I really wanna tell you becuase I haven’t told anyone at uni’. So we both clearly had these 2 pretty self-restraining problems or like restraining problems that we thought were bad but obviously weren’t that bad. So i tiold him I said, ‘oh I’ve got diabetes’ and he was just like, ‘so?’ hahahah so i was just like ‘oh shit’. I kind of knew that was what would happen but i still was just like I only now having thought that you’re like the closest thing to family, felt comfortable telling you. So that’s the thing about like that initial, if someone meets you, you don’t want them to think that you’re this kind of weaker person like yeah you can eventually get to know them and tell them but if you meet someone and it’s like ‘hey its Tim, he’s the diabetic’, you’d be a bit like ‘uh’. I just feel like people would be a bit like ‘oh, stay away’. Anyway, in comparison, his issue haha was that he said that he’d never lost his virginity hahahah. And I was just like ‘mate, i’ve barely lost my virginity! Like, it’s not a big deal! And it was just quite funny reflecting on that and then basically he came out of his shell based on the fact that he was able to tell me that and from then on he was just so much more confident with me and we’re still mates to this day because of it and then just doing that and letting it off your chest, realising that it’s better for someone to know, I told my flatmate who I lived with at uni so from 2nd year onwards I had someone who was close to me and knew about how to treat me if there was ever an issue, which there never was but at least there was someone.’

‘So that was just a weight lifted off your shoulders?’

‘Yeah pretty much. And then the next thing was like I had this girlfriend, pretty recent girlfriend and i was obviously over the moon, just excited and the whole time I’d known her, basically a year, you know i’d been hiding it from her, imagine how hard that is! You spend like days with this person in her bedroom or she comes over, how on earth was I able to hide it from her? So I remember I would like when I’d arrive at her house, go into her bathroom and hide my stuff on top of the bathroom cabinet so that then I could be like ‘i’m going to the loo’ and not just liek go through my bag, take out all my stuff with me. I’d go in there and be like ‘okay good, it’s already on top if the cabinet.’

‘What did that include, what were those objects, the needles?’

‘Yeah my pen and my blood checking…’

‘Because that’s not the easiest thing to hide at all.’

‘No exactly and also like having lucozade…..

Cutt off again.

‘So at Zoe’s house – wait was this her parent’s house?’

‘No this was at uni. But also at her parents’ when I would visit or whatever. Um so yeah eventually I just felt like this was ridiculous. I was scared the whole time that if I told her, she would break up with me to cut a long story short.’

‘Why did you think that?’

‘Because I thought, I just had this idea that everyone’s looking for the perfect man and no one’s going to want to go out with a diabetic, I don’t know why. It’s just not what I thought was like a trendy thing to have and i thought oh if she finds that out, she’s gonna be like ‘nah, forget that i’m going to break up with you.’ Maybe not straight away but i thought she’d be like ‘that’s in my mind now, i’m gonna slowly not end up with this guy.’ And I was pretty serious with her so I did take it into pretty serious consideration.’

‘How did Zoe react and how did you go about telling her?’

‘I built it up in my head so much and almost the way in which i built it up in my head, is how i thought that someone else would react. I was just playing on this scenario where I told her and she basically just like broke up with me straight away or whatever. And then i think one day i did just tell her and she was just completely fine with it, like she was just like ‘oh right oh, that was interesting.’ She didn’t react badly or anything, she was just like interested in it as you would be if you were going out with someone who has got an illness like that. And almost I think it probably strengthened our relationship. The fact that i felt that it was so important, it actually just bought us closer, i don’t know.

‘So not long after, you actually moved in together, how was that on a day to day basis?’

Yeah fine like i still, even though i’d told her at uni, i still kind of kept it to myself because i didn’t really want to be seen injecting needles into myself and extracting blood, you know, it’s something you dont talk about. No one wants to go into A&E and see ill people and technically, i’m ill, i’ve got a disease. Well, I don’t know if it’s a disease, the shutting down of an organ and that’s it. It’s a condition, that’s it. Yeah i didn’t really like start injecting in front of her, I still kept it a secret, I didn’t want to talk about it, I was just like glad that it was out in the open and even 3 years later, when we moved in together in London, I still wouldn’t inject in front of her, I’d still hide it, i’d still try and get up quietly in the night and go into the lounge and do it discreetly because you just don’t like to make big deals out of something. It’s like when you go to the toilet, you don’t go ‘right, i’m going for a shit now!’ and then bring the toilet into the lounge and do it in front of someone.’

‘No, no you don’t’

‘You go away and, i know they pretend not to, but girls still fart, and girls, well not even girls, but boys and girls still go to the toilet and try not to make too much noise, you’d be discreet about biology. ‘

‘Yeah, that’s a good point to make.’

At the end of the last recording, we had a bit of a break. When we were walking Tim experienced a low to which he later told me he had just had one and I said something on the lines of ‘are you okay now? He got quite annoyed about the fact that i’d asked him that and I couldn’t really understand why, but I wanted to bring this into the interview as I think this is really interesting; how language can put barriers between people with impairments and people without the specific impairment. It’s interesting to find out how you can avoid this. He also had a bit of an argument with our mum , i can’t really remember why but It was something that was so small and the argument wasn’t needed whatsoever.

‘We just had a conversation then, about how you say when you have a low, you don’t really see the point in telling anybody because you know you’re just going to get the same reaction and know that nothing’s really gonna come of it. Why does that annoy you?

‘Um, I don’t know, I honestly don’t know. But when I have a low blood sugar, it’s weird, it’s like a very weird thing but like for example just then, me and mum fell out. But a classic symptom of having a low blood sugar, is you become very argumentative or stand-off ish. And almost it would be in my favour when I have a low blood sugar to tell everyone, and then for everyone to treat me with a bit of, well just you know, stand back a bit, like give me a bit of leeway. But instead, I don’t tell anyone and I keep it to myself because I don’t want to make a fuss. But then, you know if i start acting strangely or I go a bit pale because i’m having a low blood sugar, people don’t know i’m having a low blood sugar so people will actually just be like, ‘why are you being a dick?’ But i’d rather that than tell people and people go ‘ooh are you okay? Do you need us to stop? Do you need anything? I’ve got a cereal bar if you need it? Ohh do you need this are you alright?

‘Yeah, just pitying you.’

‘So you’re like ‘yes i’m fine’ Just in the same way that like in Breaking Bad when the guy’s got cancer, he’s just like, ‘i don’t want people to raise 1 million to save my life like it is what it is, get over it im fine.’ he doesn’t want people to help him, he feels like a burden and it all comes back to that.’

‘Yeah they talk about that in the stereotypes of disability, one being a burden. Another one being the ‘superhuman’, so anybody with a disability who does anything normal is seen as like ‘oh my god you’re so amazing, how do you do it, how do you deal with it, wow aren’t you good?’ it’s like you haven’t done anything different, just because i’ve got an impairment doesnt mean im something crazy.’

It’s exactly the same. I see it as a disability and i don’t want someone to have to offer cake around the room and go ‘oooh sorry tim i’ve not made you anything’ or ‘ooh are you allowed that?’ Its like, id rather not tell you and for me to just to go ‘no i’m alright for cake thanks.’ Another example is at work- In my first place of work i didn’t tell anyone because i was just like, again, i don’t want people to make a fuss over me but now, even in my previous job, its actually quite a big deal. You go into a room, with clients who are pretty big ballers and you’ve got this disability and you’re expected to function normally. Imagine you’re in a scenario, in a meeting room and you have a low blood sugar and you feel quite weird, like imagine if you then had to go interrupt everyone and say i need to leave because i feel ill by the way everyone, im diabetic’. You know? It’s not okay to say that. But it’s also not okay to start a meeting by going okay just to let everyone know this is tim, he’s a diabetic and if he needs to get up and leave or check his blood sugars in the meeting then just to let you know, that is a thing.’

‘Has that ever happened before?’

‘No but there’s no real way of like, there’s not an easy way of addressing that in a meeting, it’s the same way that if like a disabled person comes in, you wouldn’t expect to go into a big high flying meeting with a man that’s wheeled in or with oxygen because he’s got breathing difficulties, you know? You just wouldn’t expect it, you kind of expect the elite of london in like suits and the developing world to all be very smartly dressed, very well spoken, very good looking, nothing wrong with them at all because they’re running the country.’

‘The ‘perfect’ species.’

‘Yeah, and so when someone comes in as a diabetic, especially a young person, you’re kind of the odd one out already in the room, can you imagine them whipping out all their equipment and like extracting blood? But at the same time, i’ve also, when i was working at the british heart foundation, i’ve seen another diabetic just pull out her equipment, prick her finger, get the blood out.. obviously people take a glance over but like they make no big deal of it, in fact the person that makes the biggest deal out of it is me and i’ve noticed that. Probably because i’ve got it.’

‘So its not actually other people. That seems to be the recurring thing here, is that you think it’s something massive and that people will be disgusted by it but they’re not, they just don’t even know what it is.’

‘And like it’s quite interesting because literally every job i’ve had, there’s always been a diabetic in the room. it’s quite interesting. And like yet i’m the one that talks about it eventually, i’m the one that hides it the most and i think it comes back to the fact that i got diagnosed with it so late on. They’ve been brought up with it so its part of their character for me, it kind of came in and stabbed me half way through i was developing my own character. So yeah based on that, i’m still not sure whether to be me, just tim and not talk about it or be open about it and tell people.’

So you still struggle with that to this day?’

‘Yeah i don’t see the point in telling people but when it comes about because you do have a low blood sugar, or you do need to check your blood sugars or inject insulin, then, people have to be told about it because it’s right there in front of them. But you don’t meet someone and go ‘by the way i’m diabetic and i’m gonna be injecting soon. Do you? You just don’t tell people.’

‘So for many years you’ve been using a just needles and the pen. Recently, you got given the glucose monitor didn’t you?’


‘How was that, and how did you come across that? And first of all, how has your relationship been with the technology?’

‘Okay well firstly i’d like to point out that this clearly shows that i dont talk about it enough becuase you started off by saying ‘for years youve been using the needle and the pen but now…’ im still using the needles and the pen.’

‘No no, i know, but i meant just the pen and the needles,’

‘I havent, what do you mean?’

‘You’d used to have to prick yourself to find out what your blood level is and then inject according to that whereas now, you miss that stage out; you don’t have to use the needles as much. You have to inject insulin but you don’t have to check your bloods.’

‘Yeah, well i still have to check my bloods, but i dont have to rpick my finger, well in fact i still do that occasioanlly. So i used to have to regularly go and get equipment so that i could prick my finger, squeeze blood out and go and get a plastic test strip and scoop up the blood onto a little device that would then show my bloods and then youd have to dispose of the plastic strips, dispose of the needle, pack it all away, basically no a husge ordeal but pretty fucking long. Normal humans don’t have to worry about it becuase their bloods just stay the same, I have to do it in order to check that i’m not having an insanely high blood sugar or going low, risking having a coma.’

‘So I guess the comparison that you could make is for example, somebody with a pacemaker, they just have that inside of their body and thats that, it takes control. And, someone with a prosthetic, okay yes it might be visible, but they can put say for example a prosthetic leg and you’ve dealt with it, you can change the design of it. I just don’t feel like theres that sort of.’

‘Yeah i can’t think of another illness where you do have to monitor yourself so rigorously. But yeah so thats obviously quite annoying and frustrating but now ive got this device that you don’t have to inject, you don’t have to use a needle and prick your finger every day, you place a little sensor on your arm and then if you want to check your blood sugars, you literally just swipe your phone over it and it just tells you your blood sugars so i can do multiple additional checks of my blood sugar each day which helps me keep better control of it and i don’t know if you know how it works but it takes a reading of your blood sugar every 8 minutes and then whenever you scan it, It downloads all of those readings so you’ve got like a clear graph of where your, if you don’t check your blood sugar for like 4 hours, when you do scan, you can see how it has been for that last 4 hours. Because it’s looking every 8 minutes, at your blood sugars, it will, when you scan it, it will tell you where your blood sugar is heading, like it will say its going down quite rapidly so you’ll be able to account for that.’

‘So it seems like the most annoying thing is, before having that glucose monitor, was just how many things there were to take care of.’

‘Yeah. I’ll give you another example, i’m going to a nightclub, everyone’s asked to empty their pockets to check that they’ve not got drugs or weapons on them, and i have to fucking empty out, i used to have to empty out a device, a pen that pricks you finger, a little packet of strips, an insulin pen and a spare needle, and some like sugar that would be used, imagine taking all of that into a nightclub. Whereas now, I take, its still annoying, my insulin pen, my phone, and a small little thing of dextrose tablets around with me, which is so different and like really, i don’t need to take my dextrose, because if you go into a nightclub you can grab a red bull, but i used to take my dextrose because it used to be an ordeal for me to have to queue for the toilet, check my bloods, and then if it was low id be like shit and then i’d need to go and queue for a drink whereas now, i can just be on the dance floor and just be wherever, check my blood sugars constantly and if i can see that i’m going low, ill be like right i’m gonna go and get a drink now because it’s coming up.’

‘So those two things, the drink at the bar and the phone make it so much more normalised.’

‘Yeah i’ve feel a lot more normal, i feel a lot more of a normal person. Yes i do have to get my phone out and scan my arm but people don’t even notice me doing it, i could look like im scratching or whatever. i basically yeah, have always tried to find ways of inventing or imbedding it into normal life, like i just said, if i have to scan my arm, ill make it look like i’m scratching. I’ll hold my phone so people cant see it and go like that and i’ll come back and be looking at my phone. And i got given a little device but instead of using that, i use my phone. And the reason they give you that option, i’m pretty sure, is because people dont wanna have to have all this extra equipment in the same way that people go, if there was the option to have a leg transplant, people would rather have a normal leg than a prosthetic leg even though you can supposedly do all the normal stuff that you can with a prosthetic leg. Because it’s just not what you want, you wanna be a normal human like everyone does.’

‘One of the examples that one of these designers talk about is glasses, you could say that glasses is sort of the same, they’re meant for people with visual impairments but they’ve now become fashionable.’

‘And you just said it then, ‘impairment, you’ve got an impairment’, thats a negative word, it means that you’re not a normal functioning human. You’ve got a disability or an impairment, there’s something wrong with you you know? And who wants that’

‘So there’s also the option of a pump, has that ever crossed your mind or is it too expensive?’

‘Nah, the pump thing is for me, another example. It’s a bit of equipment that you have to wear on you, you can see it through your clothing and like yes, you don’t have to put a needle in you every time you inject but for me i don’t want a big clumpy bit of kit sticking on my belt because its like what the hells that. I know its a bit weird to say but imagine going to have sex and being like oh i just have to remove all my equipment now. Id rather just have a pen in my bag and get it out every now and again.’

‘In an ideal world, what would your technology look like?’

‘In an ideal world it would be, it wouldn’t look like anything, it would just be not existent. It would be some way of getting insulin into you without you having to inject it yourself and some way of, like a little system that checks your blood sugars for you the whole time, like your pancreas does basically, reacts to your blood sugar being high by injecting insulin, and reacts to it being low by injecting sugar, and you not having to deal with it and thats called a closed loop system and they are developing it anyway but then also for that to be as small and discreet as possible. Basically for it to just be a functioning pancreas.’

Book Reference: ‘Ours to Hack and to Own’ by Trebor Scholz and Nathan Schneider’

2017 OR books.

P.14. ‘Words are the tools of my trade as a writer, so I like to have a handle on what they mean. We rely on them so much. They connect us to each other; they remind us of what we’re capable of.’ The meaning of words, good for an endnote.

Article Reference: ‘Stigma: The Experience of Disability’ by Paul Hunt

This is from chapter 12: A Critical Condition

P.3. ‘If everyone were disabled as we are, there would be no special situation to consider.’

P.3. ‘This challenge takes five main forms: as unfortunate, useless, different, oppressed and sick.’

P.4. ‘Our lives must be tragically upset and marred for ever, we must be only half alive, only half human. And it is a fact that most of us, whatever our explicit views, tend to act as though such ‘goods’ are
essential to a fully human existence.’
Especially touching on human existence. However, im not really interested in that element. I’m more interested on the effect that the technology has on the human identity. I should probably make this clear in the introduction!

P.9. ‘We can witness to the truth that a person’s dignity does not rest even in his consciousness, and certainly that it does not rest in his beauty, age, intelligence or colour. Those of us with unimpaired minds but severely disabled bodies, have a unique opportunity to show other people not only that our big difference from them does not lessen.’

P.10. ‘our worth but also that no difference between men, however real, unpleasant and disturbing, does away with their right to be treated as fully human.’

P.10. ‘The fourth challenging aspect of our situation follows inevitably from our being different and having minority status. Disabled people often meet prejudice, which expresses itself in discrimination and even oppression.’ oppression. This is what seeing disabled people as different does.

P.14. ‘So they are inclined to avoid those who are sick or old, shying from the disturbing reminders of unwelcome reality.

P.16. ‘We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens and put away out of sight and mind.’ The aim.

Article Reference: ‘Disabling Imagery and the Media’ by Colin Barnes

P.12. ‘the disabled person is assigned super human almost magical abilities.’

P.12. ‘disabled individuals, especially children, are praised excessively for relatively ordinary achievements’

P12. ‘Daniel Day Lewis -an able-bodied actor.’ – when they cast able bodied actors to play people with impairments.’

P.13. ‘colleges have not recruited disabled students for the acting profession.’ – may be the reason that able bodied people are cast.

P.13. ‘Similar themes abound in news stories about disabled people’s achievements -either extra-ordinary or managing to fit into a ‘normal life”

P.13. ‘This triumph over tragedy approach conveniently excludes the central point that disability is a social issue which cannot be addressed by misplaced sentimentality over individual impairments’

P.13. ‘The negative psychological implications for the majority struggling to cope in a largely hostile
environment are clear.’

P.13. ‘Finally, by emphasising the extra-ordinary achievements of disabled individuals like Christy Brown the media implies that the experiences of’ ordinary’ people -disabled or otherwise -are unimportant and irrelevant. Hence non disabled people view super cripples as unrepresentative of the disabled community as a whole and the gulf between the two groups remains as wide as ever.’

Book Reference: ‘Design Meets Disability’ by Graham Pullin

This has been the MOST helpful resource so far. Pullin so distinctly draws on the impact that technology has on our identity and how other more established technologies clearly changes the way society sees them. E.g. ‘eyewear’ as the prime example. After reading this, I feel much more confident with the area that I am going into. There is still work to be done. Stigmas that need removing. Technology that needs to be redesigned or rethought. There’s so much room for improvement.

P.XI. ‘How many other examples design for disability might that be said of?’ This was stated when looking at Charles and Ray Eames’ beautiful leg splint designs. Pullin was saying how not many other designs for disability are made to look as elegant.

P.XIII. ‘Trickle down effect whereby advances in mainstream design are expected to eventually find their way into specialist products for people with disabilities, smaller markets that could not have supported the cost of their developments.’ It’s usually that mainstream design slowly reaches disabled people but sometimes (rarely) it’s the other way round.

P.XV. ‘A richer balance between problem solving and more playful exploration could open valuable new directions.’ This is where the design is at.

P.1. ‘Any language used to describe the issues around disability is understandably0and rightly- politically charged.’

P.1. ‘The World Health Organization recognises disability “as a complex interaction between features of a person’s body and features of the environment and society in which he or she lives.” Adopting the World Health Organization’s classification, … I will use impairment to refer to a “problem in a body function or structure.’

P.2. ‘An environment or society that takes little or no account of impairment, people’s activities can be limited and their social participation restricted. People are therefore disabled by the society they live in, not directly by their impairment.’ Social model of disability.

P.3. ‘Here, I will try to avoid the term user because it sounds too functional, too focused on a task, whereas products also affect us by being owned, carried or worn.‘ Important; the word ‘user.’

P.4. ‘But might flesh coloured prostheses and miniaturised hearing aids send out tacit signals that impairment is something to hide?’ hiding vs highlighting disability. Fashion is important.

P.4. ‘This has come about not just by involving the skills of designers but also by adopting the culture of fashion.’

Sun glasses and eye glasses. Sunnies are cool. What could the equivalent be for insulin pumps / pens? Heroin?

P.15. ‘ The priority for design for disability has always been to enable, while attracting as little attention as possible.’

P.15. ‘The approach has been less about projecting a positive image than about trying not to project an image at all.’

P.15. ‘But is there a danger that this might send out a signal that disability is after all something to be ashamed of?’

P.15. ‘It is more difficult to define a positive image purely from these perspectives.’

P.15. ‘Eyewear is one market in which fashion and disability overlap.’

P.15. (eyewear) ‘Addresses a disability, yet with little or no social stigma attached.’

P.15. ‘Perhaps fashion with it’s apparent preoccupation with an idealised human form is even seen as having little to say about diversity and disability.’

P.16. ‘The very fact that mild visual impairment is not commonly considered to be a disability, is taken as a sign of the success of eyeglasses.’

P.16. ‘Medical appliances and their wearers as patients’ Wrong words!

P.17. ‘Attempting camouflage is not the best approach, and there is something undermining about invisibility that fails: a lack of self confidence that can communicate an implied shame. It is significant that glasses continue to coexist with contact lenses, which do offer complete invisibility.’ Do not do camouflage. There is no shame.

P.19. ‘Eyewear positions glasses more as an item of clothing than as products.’ Glasses; all different frames, shapes colours. Fit the design to the wearer, give variety and choice. ‘Diabeteswear’ ‘pumpwear’ ‘needlewear’ ‘pancreaswear’.

P.23. ‘For many hearing-impaired people, their inability to hear clearly is far more socially isolating than the presence of their hearing aid.’

P.23. ‘Where total invisibility is impossible, the last resort has been to mold hearing aids in pink plastic, betraying a white, Western bias in itself.’

P.27. ‘What it means to design a hearing aid changes if normal human ability is being surpassed, not just restored, and the design plays an additional role in expressing these augmented capabilities.’

P.27. ‘Like Jewelry, the design seeks to complement the body rather than attempt to be camouflaged against it.’ Why are pumps on the belly? The specific design goes further (hearing aids and glasses)

P.29. ‘In some ways it is the body itself that is being redesigned.’

P.29. ‘Mullins could be said to have become an icon of the capable and glamarous disabled person, yet she is clear herself that the best thing she can do for people with disabilities is not be thought of as a person with a disability.’

P.31. ‘Her legs have a beauty of their own, not just as objects, but also in relation to her body and posture.’

Different people have different needs however. a rock climber with a prosthetic leg and an athlete with a prosthetic leg would have different goals and would need the design to be different.

P.35. ‘But a hand is more than a tool – it becomes part of the wearer’s body image, a visual as well as a functional termination of their arm. Yet the design of the split hook barely acknowledges the wearer’s body or their clothing.’

P.37. ‘And for the people around them, I wanted the prosthetic hand to be an object of healthy curiosity, a work of art.’

P.37. ‘It seems important to continually challenge existing approaches, just as this is the way in which every other area of design, art and science progresses. All too often attitudes are spoken of as if homogeneous “Amputees want discretion” Well not everyone, not always.’

P.38. ‘More confident and accomplished design could support more positive images of disability.’ This would play a part in the representation of people with a disability. Captain hook representation. What examples are there of those with insulin pumps?

Maybe don’t try and solve a problem just yet, just explore materials, beliefs and ideas.

What could diabetes technology look like in the home environment vs the office environment. Just like glasses; contacts for work, glasses for home? The element of choice needs to be given!

What if there was a shop that you could go to to try on different diabetes technology and browse?

P.113. ‘There is an increasing recognition that controversy can be employed to challenge and change attitudes. ‘ This could relate to devices standing out.’

P.183. ‘Disabled people do not all share a single experience, even of the same impairment; likewise, designers in the same discipline do not follow a single approach or hold the same values.’

Book Reference: ‘Technics and Time, 1: The Fault of Epimetheus’ by Bernard Stiegler

P.1. ‘two classes of body: the inorganic [is] non-living, inanimate, inert; the organic [is] what breathes, feeds, and reproduces; it [is] “inevitably doomed to die”‘

P.2. ‘To these two regions of beings correspond two dynamics: mechanics and biology.’

P.7. ‘The modern age is essentially that of modern technics.’

P.22. ‘To become conscious of contemporary technical reality is to understand that the technical object cannot be a utensil’

P.22. ‘We will deal here with the evolution of technics considered in general as a system, and in particular as a system that leads to the contemporary technical system.’

P.23. ‘Simondon characterizes modern technics as the appearance of technical individuals in the form of machines: hitherto, the human was a bearer of tools and was itself a technical individual. Today, machines are the tool bearers, and the human is no longer a technical individual; the human becomes either the machine’s servant or its assembler human’s relation to the technical object proves to have profoundly changed.’

P.24. ‘Technics commands (kubernaô, the etymon of cybernetics) nature. Before, nature commanded technics. Nature is consigned by technics in this sense: nature has become the assistant, the auxiliary; in similar fashion, it is exploited by technics, which has become the master. For nature to be thus exploited and consigned, it has to be considered as ground, reserve, available stock for the
needs of the system that modern technics forms. To exploit and “consign” nature is to realize the project of making oneself “as its master and owner.””

P.24. ‘Now, is technics a means through which we master nature, or rather does not technics, becoming the master of nature, master us as a part of nature?’

P.24. ‘Like the machine, the human of the industrial age is dependent on the technical system, and serves it rather than making it serve itself; the human is the “assistant,” the auxiliary, the helper, indeed the means of technics qua system.’

P.25. ‘Gilles hypothesis is that we are moving into a new technical system that requires adjustments to the other social systems.’

P.26. ‘Technology reveals the active relation of man to nature, the direct process of the production of his life, and thereby it also lays bare the process of the production of the social relations of his life,’

P.26. ‘We will see the question of a technical determinism arising in a permanent oscillation between the physical and biological modalities of this evolution, the technical object, an organized and nevertheless inorganic being, belonging neither to the mineral world nor simply to the animal.’

P.93. ‘Technology is first of all defined as a discourse on technics. But what does technics mean? In general, technics designates in human life today the restricted and specified domain of tools, of instruments, if not only machines (Louis Mumford thus thinks all instrumentality from the vantage of the machine). Technics (tekhne) designates, however, first and foremost all the domains of skill. What is not skill? Politeness, elegance, and cooking are skills. However, only in the latter do we have production, a transformation of material, of “raw material,” into “secondary matter” or products; and this is why cooking, as is the case in Gorgias, is more willingly acknowledged as technics, as productive skill in-forming matter. This is the model of the craftsman, the operator (efficient cause) of poiesis, from which has developed the theory of the four causes, on the basis of which tradition understands technics.’

P.94. All human action has something to do with tekhne, is after a fashion tekhne. It is no less the case that in the totality of human action “techniques” are singled out. These most often signal specialized skills, not shared by all. Thus the technique of the craftsman, or the medical doctor, the architect, or the engineer, as well as that of the philosopher, the artist, or the rhetorician. A technique is a particular type of skill that is not indispensable to the humanity of a particular human. This is what is implicitly understood by the term “technique.”

P.94. ‘Technology is therefore the discourse describing and explaining the evolution of specialized procedures and techniques, arts and trades— either the discourse of certain types of procedures and techniques, or that of the totality of techniques inasmuch as they form a system: technology is in this case the discourse of the evolution of that system. However, technology is most often used today as having incorporated a large part of science, in opposition to traditional prescientific techniques. The corps of engineers was born with the advent of technics as “applied science.”‘

P.148. ‘With the advent of exteriorization, the body of the living individual is no longer only a body: it can only function with its tools.’

P.152. ‘The prosthesis is not a mere extension of the human body; it is the constitution of this body
qua “human” (the quotation marks belong to the constitution). It is not a “means” for the human but its end, and we know the essential equivocity of this expression: “the end of the human.”‘

P.154. ‘”Tools and skeletons evolved synchronously. We might say that with the Archanthropians, tools were still, to a large extent, a direct emanation of species behavior’

Pancreas Animated

To gain an even deeper understanding of how the pancreas works, I modeled a pancreas to size on a model and took 121 photos as I moved the model pancreas bit by bit.

First, you see food coming down into the esophagus and into the stomach where food gets broken down before entering the small intestine, as it does, enzymes are released from the pancreas (yellow) to break the food down into sugars and insulin is pumped through the pancreas and into the cells.

Although short and lacking in finer details, I think the animation works quite well in terms of technique and replication of movement. I like the fact that the animation is done on the body rather than inside the body.