AuthorDr Victoria Shepherd Archives
March 2024
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STORIES22/3/2024 My research visit to Sydney as part of my Churchill Fellowship is sadly coming to an end. One of the last events was a symposium at the University of Technology Sydney to bring together a wide ranging group of people, from a number of institutions in News South Wales and beyond, to explore advance planning for research. The topic was developing evidence for practice, and the aim was to start developing the international research agenda. It was also an opportunity to start drawing together the themes of what I have learned during my fellowship to date, and to start writing the 'story' which will form the basis of my final report to be drafted over the next couple of months.
It was also an opportunity to reflect on the many stories that have been shared with me during my travels. Life stories have been a common thread in the conversations. Many of them personal, some professional, and quite a few are a combination of both. All of them a privilege to hear. It was also echoed in the Gadigal shields which can be seen in a number of locations, including the nearby Australian Museum (shown in the photo above) and at UTS itself. These shields are a symbol of respect to the Gadigal people, and their traditional ownership of the land on which Sydney is built. This respect is also shown in the Acknowledgement of Country that is delivered at the start of meetings and events (and also in Canada), including the acknowledgment that they are the traditional custodians of knowledge for this land on which the meeting is taking place. I was also reminded of life stories when I checked the news back home and coincidentally saw this story on the BBC. Apparently, on this day 155 years ago, a Welshman called Joseph Jenkins set off from Tregaron for Australia where he later became the inspiration for the song Waltzing Matilda as the 'Jolly Swagman'. His diaries, which cover 50 years of his life and were lost for 80 years before being rediscovered in his grandson's attic, have been a set text for high school pupils since 1978 and run to 25 volumes! His story includes struggles with his mental health, and some progressive views during his time in Australia (he believed that the land had been stolen from First Nations people for example) alongside some less favourable views including about women (and his wife in particular). The BBC piece says that the Welsh Swagman Drinking Fountain at a railway station here has a plaque with a quote from his diary which reads 'Through this [diary] I am building my own monument'. This is a reminder that we each have our story and, while not all of it might paint us in a good light, it serves as our 'own monument'. It is this life story that people should use when making decisions about us - including authentic decisions about research. I look forward to writing up and sharing my diary of adventures from this Churchill Fellowship when I get back home to Wales!
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CONNECTIONS17/3/2024 At the end of a very busy second week in Australia (meeting people as part of my Churchill Fellowship), I took some time out to visit the amazing Australian Museum which overlooks Hyde Park and St Mary's Cathedral. It is the oldest museum in Australia and has collections ranging from natural history to anthropology and mineralogy, it also houses the Australian Museum Research Institute (AMRI) which focuses on addressing contemporary challenges such as climate change and biodiversity.
I was particularly keen to visit the galleries and collections that focus on First Nations cultures and experiences. The museum has collaborated with First Nations peoples and communities to develop the exhibitions, and the museum website acts as a platform for First Nations voices with articles from First Nations writers Starting on the ground floor, I visited the Burra space to see the Garrigarrang (Sea Country) exhibition which explores the cultural and spiritual traditions of the Salt Water People from the New South Wales coast. I learned about this community's history and Ancestral Law and how knowledge of the Country and way of life is passed from Elders to the next generation. It also includes the 'ghost net' installation made out out of discarded fishing nets that are found on the coast of northern Australia and are responsible for killing wildlife. Part way through exploring the gallery, the sound of voices singing burst into life in the gallery above. This turned out to be the Maori Kapa Haka group Te Raranga Whanui - it was breathtaking to see and hear their performance in the middle of the Wansolmoana gallery. It brought the exhibition to life. Particularly as many of the items on display evoke themes emerging in the Fellowship, that of fostering connections and relationality. That includes the weavings and tapa (bark cloth), one of which is shown in the photo above, that are exchanged between the Pasifika people as part of forging and fortifying relationships. Visiting the museum, especially during a performance by members of the Pasifika community, is highly recommended and something I will take into my final week of this leg of the Fellowship.
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SPIRALS9/3/2024 As the end of my first (very busy) week in Sydney approaches, I have been reflecting on what I have been learning during my Churchill Fellowship visits so far and realising that a few themes are recurring.
First is the support for the concept of advance research planning whilst also recognising the challenges that accompany its implementation. The questions people ask about how it could work and the problems they would forsee depends very much on their role or background, but always seems to acknowledge that it would be an improvement on the current situation. People often have a story to tell about a negative experience they have had with a particular study, or a difficult conversation, and their frustration with the outcome and the unsatisfactory compromise they (and others) have had to come to as a result. Second is the central role of relationships and the importance of 'knowing'. This is both in terms of how family members may come to know the values, wishes and preferences of the person they are representing, and also the value of people who anticipate future periods of changing cognition knowing that they have had conversations with those close to them and have plans in place for their future which can bring some comfort. Third is around the inequalities that are experienced by particular groups who are under-served or marginalised in health and care, and the need to pay attention to ensuring that these groups are not further excluded. This includes First Nations and Indigenous people in both Canada and Australia, where work to build and restore trust has been mentioned in many conversations, and also for groups who often experience social exclusion such as people living with dementia. The image accompanying this blog is of a water feature at sunny Darling Harbour (officially called Tidal Feature but often known as the spiral fountain), which I chose because some of the themes coming up in conversations are beginning to feel as though they are 'coming back round'. I am looking forward to meeting lots more people and groups over the next two weeks and seeing where the patterns of these new conversations might seem familiar - and also where they are new!
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NEW HORIZONS3/3/2024 After a short trip back to the UK (partly to swap the winter wardrobe for a summer one) I have now started the second and final leg of my Churchill Fellowship travels. For this set of research visits I will be based in Sydney where I am really lucky to be meeting researchers and research groups from a number of different universities who are based here.
The journey to Australia always feels like a long one (it's 10573 miles from London), and for this trip I decided to fly into Perth and then get a domestic flight over to Sydney. As well as having my first ever view of Perth, it gave me plenty of time to reflect on what I have been learning so far and what I hope to achieve over the next few weeks in Sydney. What I learned in Canada was the impact that the different legal frameworks and research governance landscape has on legal planning arrangements and how research is conducted. Given that advance research planning (the main topic of this fellowship) sits at the intersection between these, its complexity feels a bit as though it is a jigsaw made up of other jigsaws - there are so many intersecting pieces that it could be almost impossible to see how it all fits together. How could we possibly predict ahead of time what we would like to do about being included in a particular study if we are unable to make a decision for ourselves, when the combination(s) of circumstances where this is needed are almost infinite (our medical condition at the time, the type of study and any risks and benefits involved, where and who is caring for us etc)? But there is also a simple way of viewing this. It is essentially about raising awareness that, in addition to the sorts of conversations we might have with families and close friends about what is important to us and what we would like for ourselves should we lose capacity, we should also be able to communicate what our thoughts are about taking part in research at some future point if the opportunity arises. Flying over to Sydney made me think about other types of day to day preferences we have, such as when you are checking in and get to select your own seat. The factors that influence your decision about which one to pick are driven by your particular preferences and the options available to you. Do you go for a window seat (where the benefit is getting a good view), or an aisle seat (where its easier to get to the toilet and to access the overhead lockers)? This is balanced against the downsides of being in a window seat (having to clamber over and disturb others when you want to get up), or the downside of being in the aisle seat (you either get clambered over or have to move every time your neighbouring passengers want to get past you). Then there is extra leg room, emergency exits, front or back of the plane, any additional costs involved, who we are travelling with etc! And our preferences might change a bit over time depending on the circumstances. But people in our lives might know what we are likely to prefer because they have travelled with us, maybe we've even chatted a bit about it, and they probably know something about our current situation. If push comes to shove, they could probably pick a seat for us if they have to. Maybe advance planning for research is like that too? Or maybe there are better insights or more helpful metaphors once the jet lag has worn off! |