Feeling the Campus: Place and Emotion

Posted 13-5-24; Written by David Skinner

One theme that has emerged as our project has developed is the emotional resonance of the campus, both as it currently exists and as a vision of the future.

One sunny evening last summer as I led a small group of walkers around the site, we were passed several times by a man and a small girl on a shared electric scooter whizzing around the roads and paths in the quieter parts of the campus. Safety concerns aside, they were clearly having great fun but it was also apparent that the child was seriously ill and had only briefly escaped her hospital ward.  As this anecdote suggests, if you spend much time there, suffering - illness, infirmity, pain, and loss - is all too evident on campus.

The emotional charge of the campus is also expressed in the responses of our fellow walkers. Many associate the hospitals on the site with key moments in their life: the birth of a child, the death of a loved one, their struggles with chemotherapy and so on. In a few cases walkers have taken sizeable detours to avoid locations on campus so evocative that they could not bear to revisit them.

Health professionals and scientific researchers understandably adopt a range of well-established practices to distance themselves from the everyday suffering of their patients and subjects. We should also recognise, however, the ways in which they use this suffering and hope for its future ending to generate interest in and financial support for their work and as a way of managing ethical concerns about novel procedures. This mobilisation of hope, for example, runs through the rhetoric promoting the new Cancer Research Hospital and Children’s Hospital planned for the campus.

A key rationale for the development of the campus is the benefit of co-location of scientists and patients. Whatever the positives of this proximity, the campus also generates some awkward conjunctions as the shiny promise of the life sciences butts up against the messy realities of the lives of people with illnesses. One current hot spot is the triangle of sadness, the edge of the expensive landscaping around AstraZeneca’s Discovery Centre closest to the hospitals. This location has become an unofficial vaping area. Amongst the expensive public art and tasteful planting - as the cliché goes - all human life is there.

Steph is a sociologist of health. Her past research focused on the management of emotion in kidney and liver donation. This has involved fieldwork and interviews with donation staff, organ recipients, and the families of organ donors. Many of these past interviews were conducted in the concourse at Addenbrookes Hospital. It was, therefore, particularly interesting to talk with Steph as we walked the campus and drank tea in the Discovery Centre public café.

[Image: an awkward selfie]

We started our walk close to the Discovery Centre and Royal Papworth Hospital. It is always useful to be reminded of the capacity of this part of the campus to inspire new visitors. Steph’s immediate reaction was excitement and enthusiasm, at one point wondering aloud ‘how do I go about getting a research job here?’ To my considerable discomfort, she also requested that we take a hurried selfie as we left the AstraZeneca building.

Steph insisted that ‘my organ recipients would love’ the expansion of the campus. This was, she said, because they liked to feel ‘surrounded’ by all kinds of research and care and to believe that they were treated in the ‘best possible’ place. Steph explained how the ‘her’ organ recipients had great affection for the hospital and had largely positive feelings about being under its care. Many recipients had visited the hospital for dialysis two or three times a week during their illness and as they waited for a possible donor organ, would often be admitted to the transplant ward. Through this sustained contact they developed a close relationship with fellow patients and with the staff who had the task of deciding who should be allocated the next available organ. These were clearly testing times where potential recipients and their families had to face the possibility of their imminent death and deal with difficult feelings associated with hoping that someone else might die so that you could have their donated organ. Steph’s point is, I think, that whatever these challenges, her subjects felt supported through them, cared for, and part of a shared experience.

While successful organ recipients felt supported by the hospital, they could often feel isolated once they were discharged. The attitude was that they were ‘fixed’ but many recipients told Steph about an unmet need for long-term psychological support. This need relates in part to the trauma of serious illness, the wait for a donor, and the operation itself. But it also reflects recipient’s the complex feelings towards their donor and about their own survival which often did not neatly match the ‘emotional scripts’ they were provided with. Recipients were expected to exhibit gratitude towards their donors, pursue a healthy lifestyle, and to treat their new organ as a second chance that allowed them to lead a full and worthwhile life. In the months following their initial recovery, however, many found it hard to follow the expectation that they would write a letter thanking the family of the person who had donated their organ.

Some of the recipients in Steph’s study coped with their difficult feelings by throwing themselves into forms of biosociality (a term developed by the sociologist Paul Rabinow in the 1980s to refer to shared social activity and identity based around biological characteristics) linked to their experience of transplant. This notably included some representing Addenbrookes Hospital in the Transplant Games. Many of Steph’s subjects also felt an obligation to promote organ donation to others. Prior to and after their transplant they also embraced any scientific research studies that they were invited to participate in.

In the on-going advocacy of organ donation by former patients and in the bereaved people expected to make the brave, community-minded decision to approve the donation of the organs of a loved one who had suddenly and unexpectedly died are extreme forms of a phenomenon that, arguably, underpins the campus philosophy of co-locating science and hospitals. Patients are expected to be good biocitizens who will feel and do the right thing, sharing bodily materials or their data, and being willing participants in research studies and drug trials. Like the reluctant letter writers, however, some might find it hard to show the expected gratitude for being caught up in this process.

Often the call to donate, share and participate relies on the mobilisation of hope: if not a cure now then sometime in the future; if not for you then for someone else. As we walked Steph reminded me of the classic sociological text Iain Carib’s The Importance of Disappointment (1994). Wander in many of the public spaces on campus and one is soon confronted by the reality that many human problems are not neatly fixed by a new medical procedure or drug or a carefully worded letter. Alongside hope we must deal a difficult emotion - the disappointment that things do not always work out for the best.