In this issue of Other Worlds, Pernilla Manjula Philip reflects on the various practices of care revolving around her illness. A complex scenario emerges: the safety procedures regulated by the official healthcare system limit the well-being allowed by do-it-yourself technologies developed by independent communities of makers. The approach of these makers is, in turn, often too technical and masculine to include most users. With her artistic work, Pernilla mobilizes empathy to counterbalance this state of affairs.
I did not care that much about the medical-industrial complex before I found myself in a hospital trying to wrap my head around the fact that I will never leave again. I would eventually go home, but I would bring my diagnosis with me. And with that, bring the hospital along. My brand-new illness has attached me to a world of care that I will always depend on. A lifetime of needing care.
I grew up in a Swedish household where my only direct insight into the care system was via my disabled brother. Sweden, a vast country, established a system to alleviate the physical isolation of disabled people, often distant from one another. Thanks to a governmental initiative called färdtjänst, these citizens could travel by taxi at a symbolic rate. As a teenager I once took my brother with me in his discounted taxi to buy hash in the suburbs of the city where we lived. I recall it as a disaster, because one of us had to take a dump in the dealer’s apartment. But at least the taxi ride was paid for by the Swedish care system…
Twenty years later, with little warning, my pancreas stopped functioning. Bedbound and confused, I was digging out my previously unused insurance number from a messy email inbox. Unwillingly signing up to my new part-time job as stated in my medical file – type 1 diabetes. A disease that makes me life-long dependent on insulin. Leaving behind a care-free sense of time, the privilege of loosely planning my days and the ability to leave home without a packed bag of supplies. It was hard to adjust, and it was painful to re-shape.
When facing illnesses, each patient is often left to pave the way of their medical management. At times, the internet becomes a source of information from the sick-bed, offering both fear-triggering paths as well as the relief of new perspectives.
It took me a few months and some aimless searches to find the DIY (or perhaps DIT, do-it-together) community of people who share my disease and face similar struggles. I learned that there are user-driven foundations busy with software and hardware development which is made by diabetics (and their loved ones) for diabetics. Nightscout, for example, is a foundation that created a solution for following blood sugars remotely. An acquaintance of mine tells me about it:
We use Nightscout to monitor our 2 year and a half old daughter’s glucose levels. It’s a great solution because it prevents us from having to interrupt her play several times per day in order to check her pump. It also allows us to keep an eye on the levels when our daughter is at our babysitter or at preschool.
When I read about DIY attempts to create a “closed loop system” by hacking into the same brand of insulin pump that I was currently using, it was not obvious for me to try them. A technical solution was simply not enough for me and I needed to understand more about my current treatment plan. I was a bit scared, to be honest, but the expected benefits outweighed the fear.
Even though I live with daily decisions involving a lethal medicine, my network of doctors, nurses, pharmacy and health insurance did offer me a feeling of safety. The option of DIY tools encouraged me to re-consider what it would take for me to abandon that and start developing new feelings of safety attached to these user-driven (hacked) medical devices.
What is looping? There are two main devices available for type 1 diabetics. One measures blood sugars (CGM) and sends this data with a few minutes delay to a receiver, generally a phone. The second is an insulin pump.
Both these devices are sometimes referred to as “black-box technology”. It means that they have set limitations for targets and alarms and may block access a patient’s data, making it impossible for patients to use, unless hacked into.
In a non-looping system, the only connection between these devices is the patient themselves and/or their caretaker. The official pump that I use distributes insulin by following a pre-programmed schedule, whereas my hacked closed-looping system allows both devices to communicate and automatically adjusts to my bodies glucose levels every few minutes. The open source looping system that OpenAPS and RileyLink developed, closes when these two devices communicate with each other to automatically adjusts insulin delivery. Via an algorithm it shuts off insulin injection when sugars are trending low and increase it when they are trending high. In the last year, a similar device has been approved, but the DIY version is far superior in its ability to adjust its settings, and its compatibility with type of pumps. Therefore the DIY looping system is still highly essential for myself and others.
I am now two years into my hacked looping device and I would fight anyone trying to take my artificial pancreas away from me. This system has resulted in small customized adjustments, that becomes big improvements in my sleeping pattern and general quality of life.
The diabetic DIY branches out in other ways beside the loop. Without getting too techy , it involves follow apps and hardware that widens the functions and collaboration between devices. But it can also involve individuals that illustrate how to open a black-box device that is sealed closed by the manufacturer.
Medical devices including a custom-made phone case for open-source hardware allowing various devices to communicate, making all data accessible and all settings customizable.
It is important for me to acknowledge that I do not consider open-source DIY projects an alternative to scientific knowledge, but instead I see them as holding an additional layer of care. I am transparent with my medical team and wonder how my loop would work if it weren’t for my health insurance covering my pump and CGM.
When I decided to start looping, I talked to my endocrinologist. They had an issue with the legal aspect and did not encourage anything that could not hold legal grounds. However, they also showed support and understanding. It was helpful for me to involve them in my medical choices, as they inform my artistic practice and I could discuss my work processes. But it was also helpful for them, as our discussion would generate more empathy. Empathy is rarely taken into consideration when private companies develop medical devices. The basic structure of profit-based companies is self-explanatory. As a person reliant on these tools, I find the financial profit aspect to be troubling, to say the least.
In the name of safety, official medical devices go through both expensive and intensive testing by EMA (European Medicines Agency) before being released on the market in Europe. The closed-loop hardware that OpenAPS and RileyLink developed haven’t gone through enough testing, which makes it seem unsafe.
At times I wonder how much safety I am really sacrificing when using this non-approved device. The dichotomy of safe and unsafe tools is blurry for me as a type 1 diabetic. Because living with a life-threatening disease means just that – life-threatening. I inject a potentially deadly medicine several times a day to prevent an otherwise impossible life, sometimes calculating dosage in the middle of the night. I trust this device more than myself doing maths for the 2nd time in the middle of my sleep. That does not always feel safe and I’m glad to leave that calculation to a computer.
One thing is clear, the institutions that I rely on are not able to hold all of my needs. Rules and regulations are there for my protection, but this hacked device is offering me something that I am so extremely thirsty for. Like a night’s sleep, more time to live and less time counting carbs. And the possibility to choose my own schedule for alarms; this may seem like a small thing, but alarm fatigue1 is real! As a result, my hacked pump offers me a new kind of feeling of safety. An agency of my own medical management that is based on care and not on profit.
Not everyone has the same access to the DIY solutions for looping. Individuals well versed in hacking and making would have a confidence that others might not possess. I’m not a maker nor a hacker, so I found the technical hurdle intimidating. Where technical instructions were drily presented I was slightly put off.
After digging in technical tutorials on YouTube and instruction documents, it became apparent to me that they derive from a masculinely coded language and culture. With a few important exceptions, the community seemed to be driven by men. This is apparent while browsing the Facebook support forums, the makers of instruction videos as well as within the group of developers. Although gender presentation is not the same as gender identity,2 I wonder if some femme-identified people are discouraged from considering themselves as makers or hackers.
While keeping a critical eye on lack of accessibility, I embrace the hacker’s perspective of making and tinkering as collective methods of activism.
In the techno-debris video Green Cross I scramble the format of DIY YouTube tutorial, with the intent to widen the invite to participate and benefit from hacked medical devices. A battery embedded in a way that was made to not be replaced, is renewed and given additional time to function. By doing this, diabetics who are not able to afford this technology, are able to benefit from this device.
Driven by my own urgency of relying on inaccessible, “black-box” medical devices, I research the politics of healthcare. While mapping out different angles from which to tell the story of the agency of an ill-rendered body, I try to visualize both the joy and frustration of living with illness in an ableist society. I investigate how being sick can be similar to being broken. But being broken isn’t the same as being disposable.
The Care Unit. A nomadic room for rest, medical management and open conversations.
My installation The Care Unit is a scenography work and a place to hang out, an atmosphere that connects the medical-industrial complex to the domestic, every day, and intimate aspects of illness. Touching upon different domains of healthcare, the objects are never clean or clear, and hold diverse narratives: personal and shared ones, fictional and autobiographical.
Inside the cell-like modular installation, you can find warped and stacked medicine boxes, a curved bed and a desk with tools for open-source research. Life hacks for joy and pleasure when needing and giving care is not an option but a necessity. Clinical and domestic objects belonging both to a home, a hospital and a DIY lab. The places that somehow follows me everywhere as I live among them all inseparably.∎
More information about the DIY diabetic community can be found via the hashtag #wearenotwaiting on Instagram and Twitter.
The author wishes to thank the Sandberg Instituut, Anja Groten, Flavia Dzodan, Daniel van der Velden, Staci Bu Shea, Silvio Lorusso, Amy Suo Wu and Elia <3 for their support and inspiration.
Other Worlds is a shapeshifting journal for design research, criticism and transformation. Other Worlds (OW) aims at making the social, political, cultural and technical complexities surrounding design practices legible and, thus, mutable.
OW hosts articles, interviews, short essays and all the cultural production that doesn’t fit neither the fast-paced, volatile design media promotional machine nor the necessarily slow and lengthy process of scholarly publishing. In this way, we hope to address urgent issues, without sacrificing rigour and depth.
OW is maintained by the Center for Other Worlds (COW), at Lusófona University, Portugal. COW focuses on the development of perspectives that aren’t dominant nor imposed by the design discipline, through criticism, speculation and collaboration with various disciplines such as curating, architecture, visual arts, ecology and political theory, having in design an unifying element but rejecting hierarchies between them.
Editorial Board: Silvio Lorusso (editor), Luiza Prado, Francisco Laranjo, Luís Alegre, Rita Carvalho, Patrícia Cativo, Hugo Barata
More information can be found here.
Forlano, Laura. 2017. “Data Rituals in Intimate Infrastructures: Crip Time and the Disabled Cyborg Body as an Epistemic Site of Feminist Science.” 2017. Catalyst. Special issue on Science Out of Feminist Theory Part 2: Remaking Science(s) 3 (2): 1–28. ↩
Costanza-Chock, Sasha. 2020. Design Justice. Cambridge: MIT Press, p. 154. ↩