UCL Grand Challenges


Creative Lives episode 3: Helping hands - loss, bereavement, vulnerability

In this episode, Lorna Collins is in conversation with Jess Turtle and Dr Anne Lanceley.

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Lorna Collins  0:03  
Welcome to Creative Lives, a podcast which opens provocative conversations, experimenting with big ideas and local practices. My name is Lorna Collins. My topic today is 'Helping hands, loss of employment, bereavement, and vulnerability', and my guests are Anne Lanceley and Jessica Turtle. Jess Turtle is the co-founder of the Museum of Homelessness, a community led social justice museum set up in 2015. Jess has worked in culture and heritage since 2001, and most recently worked with the Museums Association. She is a visiting tutor at King's College London and holds an MA in Psychosocial Studies from Birkbeck. Anne Lanceley is a researcher who examines cancer symptom management, recovery after cancer treatment, quality of life and innovative psychological therapies. Her research build a practice to open better care and support for women with cancer, challenging traditional methods of research and communication in healthcare. one topic she examines is the impact on the nurse when they hear patient's feelings and distress. 

So people, we start with creativity. Please, can you tell me - what does creativity mean to you? And how do you express yourself creatively in your own life and your work? Anne?

Anne Lanceley  1:34  
Gosh, that's a really fundamental question. I guess, for me, creativity involves imagination, and imagining myself, particularly in my work, in the shoes of patients, and where I can imagine alternative possibilities and different ways of doing things, particularly in healthcare. But in my personal life, daily life, I express myself creatively in the garden, by putting different constellations of plants together, different shapes, in opposition, different colours, and experimenting, trying to find ways of growing new plants -- what does well? What does less well? -- and incorporating different objects into the garden. So driftwood and rusty metal and stones, that feels very satisfying for me. I can talk about the work in a moment, but it'd be great to hear from Jess.

Jessica Turtle  2:32  
Thank you, Anne, I'd like to go to your garden right now, that sounds amazing. For me, creativity, I think, is really about survival. So this is what we see in the homeless community. Creative resistance is used as a form of survival. And I think that's probably true for me as well. So I experienced, you know, homelessness and some adverse things as a child and as a young person. And then for years, I hit that part of myself for my experience. And I also thought I wasn't creative. And I think there's somehow a link between the two. And then for me, later on in my career, you know, I've taken that experience, and I've stopped hiding it. And not only that, gone even further and made a museum of homelessness, working with other people to do so. That is a creative act of resistance, I think, to use that experience and make something beautiful and connected and useful out of it. So there's a sort of defiance to it. And I think when I think of creativity, and I see so many of our community members doing similar things, that's what it means for me. 

Lorna Collins  3:40  
It's very moving. Thank you, Jess, thank you for that little introduction to your life and your work, and how creativity furnishes both of those two things. Anne, would you like to tell us about your work in terms of creativity? 

Anne Lanceley  3:55  
I mean, picking up on Jess's, as you say, very moving account of how she uses herself and her own experience as a resource, a creative resource. And I guess, I hope to do the same in the work that I do with cancer patients. In encounters with people in the hospital, I suppose I hope to express myself creatively using all my imaginative resources to understand the experience of the illness from their perspective. Not only the physical symptoms, but the emotional realities of the illness. And I suppose that means being constantly curious and attuned so that you can best understand a person's individual experience of their illness. And so in a way each encounter with a patient is a creative opportunity, and can act as a foundation for ongoing work with an individual and their family to consider what sort of interventions may help and what might support them best. 

Lorna Collins  4:59  
That's incredibly profound to think of a chance meeting with a patient, whether it's chance or not, I'm not sure, but as an opportunity to be creative. So let us now contextualise the issues at stake here: loss, vulner ability and bereavement in the current moment. What is the situation and what are the issues that you're facing right now? Whether that is COVID-19, or the pandemic or other things? 

Jessica Turtle  5:27  
One of the things that we work on in Museum of Homelessness is a project called "The dying homeless project". So we aim to document and honour everyone who dies whilst homeless in the UK, and whether that's street homeless or in some form of accommodation. And we recently released our findings for 2020. And it was really sobering and sad, and made us angry as well, because, although basically, there is a big drive, which was called "Everyone in" which was to accommodate people in empty hotel rooms and things like that, as a public health measure, which was brilliant and did work as a public health measure. But unfortunately, non-COVID rate of deaths went up by 37%, in 2020, compared to the deaths that we documented in 2019. So we're left with a horrible question, really, which is what's happening when we have a society at the moment where people are less safe, when they come inside into the care of charities in the care of the state, you know, in our collective care, than if they had been on the streets? So that's something that we're grappling with a lot, you know, what's going on around homeless people's deaths? And why is that increasing in that way? At the same time, as it was, only 3% of those deaths were COVID related. So it really did work in terms of stopping the virus from causing fatalities. So yeah, that's just something I wanted to share in response to that question. 

Lorna Collins  6:58  
I'm quite shocked. What about you, Anne? 

Anne Lanceley  7:03  
I mean, in terms of healthcare contexts, there's two things I suppose I'd like to flag up. One is that the sense in which in the pandemic, we're all caught between suffering, whether that's our own experience of illness, or loss, or bearing witness to that in others. So suffering on one side and necessary defences on the other to sort of keep going and carry on with our lives, despite the devastating loss of COVID around us. And I think creative approaches can mediate between suffering and defence in very powerful ways. And they can be grounded in individual and collective experience, so that we can remain open to the feelings of others. And these defensive elements don't get too entrenched, so that we don't, I suppose lose our compassion for what's happening. I mean, it'd be good to maybe exchange with Jess some ideas about concrete ways of doing that. And I suppose the other thing that I'm very conscious of in the pandemic in the cancer care context is that an extrinsic reality of COVID has shifted the whole frame of uncertainty within healthcare. And this may well apply to other contexts as well. But the pandemic's sort of thrown a spotlight onto uncertainty as a sort of fundamental issue in medicine and healthcare. It's the inherent uncertainty of not knowing whether certain treatments are going to work or the impact of them. So for cancer, for women and men with cancer, they were having to weigh up the risk of going ahead with their treatment against dying from COVID because the treatment would make them more vulnerable. So those very difficult trade offs were sort of highlighted. 

Lorna Collins  9:10  
How do you face that impossible situation and question? How do you weigh up? 

Anne Lanceley  9:15  
With great difficulty. I think it's it's very hard. I mean, there's an element of uncertainty that characterises most cancer treatments. I mean, in that sense, not much has changed. But the pandemic's highlighted this experience of uncertainty. And this is where I think creative approaches are needed to help create more meaningful treatment plan discussions, where the starting point will be the patient's values and preferences. And we need creativity about ways of giving voice to the patients and ways to support them, in their choice and their agency.

Lorna Collins  9:54  
Which leads on to the question what can be done creatively to address this situation. Jess, would you like to jump in here? 

Jessica Turtle  10:03  
I can give some thoughts. But I also interested to hear from Anne, regarding, like the sort of specific creative methods that might be employed to, you know, to help someone articulate what they might want in a care plan, for example, is that the sort of thing that you're talking about? So I think that's really, really interesting like that use of creativity in a clinical setting is not something we've done. 

Anne Lanceley  10:27  
One thing that we have been doing, we've been taking objects into the clinic. We've been taking both museum objects, and inviting patients to bring their own objects of personal value with them to the clinic, as a way of using them as a focus for working with patients in terms of self-mastery, creating narratives about their choice and preferences. The imaginative working with those objects, has been very positive in terms of patients sort of reclaiming, you know, a very personal grasp of their cancer pathway. And one colorectal patient, john, at the end of three or four sessions, he said, the process that began with a range of unusual objects has encouraged or perhaps given me permission to express an interest in forms, base, architecture, my own choice, and in life. So I hope that gives you a flavour of one way in which we might be able to address these aspects of patients complex decision making.

Jessica Turtle  11:49  
Yes, and that is really cool work. Amazing. We do quite a bit of work with objects and objects storytelling as well. I know what you're talking about with this idea of self-mastery. I think there is something really powerful in an object or working with an object, it sort of releases or gives permission, in a way for people to explore things safely. That's what we found. So we, when we work with objects, people give an object to the museum and they give a story or a testimony with them, and then that story is performed with the object and the process of people donating the objects of the story to the museum, it is quite a therapeutic process in itself, people have reported back to us. So there's something about the object freeing up or giving permission to explore things that might feel less safe, without the objects -- almost as a prop. Does that make sense? So I was hearing what you were describing, with the patients. 

Anne Lanceley  12:51  
Yeah, that's exactly the sort of experiences that we've had. And what seems to happen is that the object can bypass the conscious mind and get to a much deeper level quite quickly, when you introduce the object. And so it's a powerful way of reaching quite deep feelings that are less easy to express. 

Lorna Collins  13:16  
Do you think that the presence of an object being tangible, physical. Do you think that helps, in some way, people deal with the intangible, emotional, erupting, transcending the dichotomy between subject/object or am I being a philosopher?

Jessica Turtle  13:35  
No, it I think it's good to think that deeply about objects. We did the project, I've got a t-shirt on, "Objectified in 2018", from Dr. Lasana Harris at UCL and he specialises in dehumanised perception which is an amazingly interesting phenomenon which everyone does involuntarily. So it's not like if whether a good or a bad person but basically to protect ourselves from vicarious trauma. In certain situations, our medial prefrontal cortex won't activate. And so we will perceive a nonhuman as an object so it happens in situations of slavery. It happens with porn, and it happens with people who are homeless. So we read his research were like, wow, this is amazing, like, so basically, people can be dehumanised, you know, to that extent, that they're seen as an object, and that if we can work against that, and we might be able to fix some of the problems with homelessness and inequality. And so we teamed up with him to see if the object stories could change what happens in people's brains when they perceive a homeless person. And we did like a live experiment Manchester Art Gallery, which ran for a week/ T he audience, hearing the object story performed, didn't change their perception, there was a humanising effect, which we found brilliant because in the art we know, right, we always say the VR Creativity changes people's hearts and minds in this really impactful, etc. And it was really great to have some hard science data to back up those claims for the first time in my career anyway. But it wouldn't be the same, if it was a person who's homeless telling their story, it'd be ethically fraught for a number of reasons. But, but also we think that there's something about the object. It helps people to mentalize the person who gave the object and it shows that there was an agency and choosing the object and giving the story. So you're already really humanising even before you've heard the story. So, yeah, we think on many levels, the objects are like super powerful acts of resistance and themselves. 

Lorna Collins  15:42  
I think this is really profound. And I'm so grateful for you two both to come and speak with us like this. So thank you to Jess and Anne for what you have shared and for our collaborative thinking. I look forward to expanding and applying these ideas in our creative practice in our creative lives. Thank you to Grand Challenges for producing the podcast, UCL Minds for publishing and the input of our numerous collaborators behind the scenes. The editing is by Nina Quach and the music is by Tim Moore. We will be back with another podcast in two weeks time.

Transcribed by https://otter.ai