The Modified Body

How might we reconsider our relationship to medicine in the middle of a pandemic?

I am living a much more extreme version of lockdown than most. As I shield myself due to Cystic Fibrosis, my home has become my hospital. I am alone, experimenting on myself.  Historically, self-experimentation was the primary method for medical discovery. Long before clinical trials, scientists and doctors literally took medicine into their own hands and made themselves the patient. This led to a fair share of disasters, but is also the foundation upon which we gained innovations such as modern anaesthesia in 1846 (Pain, Pus and Poison: The Search for Modern Medicine, 2013). 

[1] Dr. John Collins Warren and William Morton perform the first public surgery without pain, thanks to the use of anaesthesia.

Today, this spirit of self-experimentation is still very much alive in the form of ‘DIY medicine’ as a last resort when healthcare systems fail to support the individual. There are currently 4.5 million people on NHS waitlists for specialist care in the UK (Anandaciva, 2019). This number will only continue to grow as all non-urgent medical procedures have been postponed due to the pandemic. Left unchecked, this growing backlog will give way to an entirely new health crisis.

[2] A commercial fisherman demonstrates how to hack a set of false teeth for about 5 USD out of FIMO, claiming that ‘the only real danger is a choking hazard’.

Similar to DIY healthcare, but on the opposite extreme, is people participating in ‘corporate personalised medicine’. Seeking healthcare outside the scope of government medical systems, the most significant distinction between these trends is money. These Silicon Valley technologies seduce people to take interest in the inner workings of their own bodies, but in reality these technologies are used to mine personal data to ultimately influence the purchase of more products. 

“An app a day keeps the doctor away” (Apple, 2020)

Personalisation directly clashes with the ideology of public health as they fundamentally value different things. Personalised medicine relies on the perceived freedom of choice, and often comes at cost to the individual— directly contrasting the NHS that is free at the point of use.

[3] Amazon is currently operating online pharmacy PillPack in the US and has submitted applications for similar programs in the UK.

These big tech interventions pose a danger of further privatisation over the NHS. Do we really want Amazon handling our health data, or running our hospitals?

Designers have a tendency to blindly speculate about worlds where individuals take medicine into their own hands, commodifying healthcare systems to equate systemic change with products. While recognising that the underlying structures that fuel this desire cannot be solved by design alone, these superficial responses are not the solution. The dilemmas we face are far more complex. We need doctors, and that isn’t going to change. 

Design can’t single handedly solve systemic problems of public health, but it can question the way things are. This is the responsibility of good design. 

“It is not enough that [design] simply exists and can be used to experiment or entertain; we also want it to be useful, to have a sort of social usefulness, specifically, to question, critique, and challenge the way technologies enter our lives and the limitations they place on our people through the narrow definition of what it means to be human” (Dunne and Raby 2013)

Knowing this, it is far more interesting to use design as a tool to consider the nuanced psychological implications of healthcare. What is the relationship between the physical body and the treatments we take to maintain it? Am I the same person with or without the medications keeping me alive?

“The body is systematically restored and reshaped...We routinely replace parts on the inside of our body, like fillings in a tooth...These replacements and adjustments are not experienced as changes. They are fully integrated into the idea of the ‘natural’ body. The very idea of adding new body parts and removing others has become routine” (Colomina and Wigley 2016)

[4] A selection of items used to conceal facial injuries during the early development of plastic surgery, post WWI. Included are eyes, ears, noses, and parts of the face, as well as several pairs of spectacles, which were used to disguise the joins and keep parts in place.

[5] With the completion of her transplant, Katie Stubblefield joins a group of only 39 other people that have undergone a similar procedure.

Health is a crucial part of our identity. When faced with changes to our health, we are also faced with changes regarding our perception of ourselves. Katie Stubblefield, 21, is the youngest person to receive a facial transplant. 

“Surgeons finish the intricate task of removing the face from an organ donor. Awed by the sight and by the gravity of their work, the team falls suddenly silent as staff members document the face in between its two lives.” (National Geographic 2018)

In 2019, the NHS approved the use of Symkevi and Orkambi, gene-specific modulators that effectively rewrite a patient's DNA while active within the body. These medications treat the underlying cause, not the symptoms, of Cystic Fibrosis. The next iteration of body modification, these medications reconstruct the body in nanoscale.

Physical alteration of the body has become so normalized that we’ve forgotten how extreme it is to replace parts of ourselves. This acceptance has led to desensitization. When we take medicines, we are continuously altering our body.  As someone who relies on hundreds of pills a week to continue life as ‘normal’, I often find myself grappling with my own identity. I have been taking the same medications for twenty-five years. My relationship with these drugs is longer than any home I’ve lived in, or friendship I’ve had.

Life in isolation has pushed me to rethink my relationship with medicine. My health regime has punctuated my every day, leaving me hyper-sensitive to the myriad chemicals that travel through my body in the form of prescription drugs. This phenomenon will always have a unique strangeness. Lockdown drudges on, particularly for those with underlying health conditions. 

By attempting to speculate upon how our interactions with medicine can acknowledge its strangeness, there is an opportunity to consider ways in which we might more authentically, empathetically, and critically redesign our relationship with medicine.

[1] Prosperi, W.L (2001) Ether day, 1846. [oil on canvas] Massachusetts General Hospital Archives and Special Collections, Boston, Massachusetts.

[2] $5 DIY Cosmetic Dentistry, 1-Hour Dentures, False Teeth (2009) [screenshot]. Available at: https://www.youtube.com/watch?time_continue=17&v=GvTEsSkT9s8&feature=emb_logo (Accessed: 10 November 2019).

[3] Amazon pharmacy (2020) [screenshot]. Available at: pillpack.com (Accessed: 1 May 2020).

[4] Horace, N (1914-1918) The Development of Reconstructive Plastic Surgery During the First World War. Available at: https://www.iwm.org.uk/collections/item/object/205213407 (Accessed: 1 May 2020).

[5] Johnson, L (2018) Story of a face. Available at: https://www.nationalgeographic.com/magazine/2018/09/face-transplant-katie-stubblefield-story-identity-surgery-science/ (Accessed: 28 May 2020).

Written by Molly Bonnell