Reimagining sexuality, ageing and death

Inaugural Lecture - Professor Rebecca L Jones and Professor Erica Borgstrom 
Reimagining Sexuality, Ageing and Death
03 June 2026

Klaus-Dieter Rossade: Good evening and thank you for joining us here in the lecture hall and also online on YouTube, for another lecture in our inaugural lecture series.
I'm Professor Klaus-Dieter Rossade, I'm the Executive Dean for the Faculty of Wellbeing, Education and Language Studies. I'm very proud to be hosting this inaugural lecture, one of a series which showcases our research, teaching, and knowledge exchange portfolios at the OU.

Today we'll hear from two new professors from my faculty, Wellbeing, Education and Language Studies. We'll hear from Professor Rebecca Jones and Erica Borgstrom who, in their inaugural lectures, explore how we understand sexuality and aging, and death and grief. Through research, personal experience, and creative reimagining, they challenge taken for granted assumptions, and invite new ways of thinking about queer joy, academic life, inclusive futures and the end-of-life.

But before we begin, some housekeeping. The lecture will be followed by a Q&A session and then we'll celebrate with refreshments downstairs for anyone in the theatre. Audience online, you'll have to provide your own refreshments. For anyone in the audience using a Bluesky platform, please feel free to post using the hashtag #OUTalks and tagging @OpenUniversity and let the world join us today. For members of our audience joining us via YouTube, please use the email address provided and keep your comments and questions brief so that we can address them during the Q&A.

Time to introduce our first speaker, Professor Rebecca Jones if you want to come up. Rebecca Jones is Professor of Sociology, Sexuality and Aging. Her research and teaching interests centre on sociological approaches to later life, sexuality and especially sexuality in later life, often using creative methods. Particularly, she's an expert in producing high quality distance learning materials, particularly on challenging topics around sexuality and the development of skills of others in creating distance learning resources. She's a Senior Fellow of the Higher Education Academy.

The title of her lecture is Moments of queer joy: Reimagining sexuality, ageing, and being an academic. I'm sure you'll be as interested as I am to hear what she has to tell us. Please now put your hands together for Rebecca Jones.

Rebecca Jones: This is my grandmother, my mother's mother. She was born before the First World War so she used the word ‘queer’ to mean strange, weird, peculiar. When I was about 15 she developed dementia, and her own behaviour became what she would have called ‘queer’. She would put words or objects together in ways that were not the conventional ones. Like, for example, if she was putting shopping away in the fridge, most people put the similar foods together. They put the salad things in the salad drawers and the jars of things together on one shelf. But she might put the foodstuffs that were the same colour together. So you got the green things on one shelf and the red things on another. The fridge looked much more attractive than usual, and that made me realise, you don't have to categorise things in the way that we usually do. You can think about the world really differently from the way that I just assume it is. I found that really interesting and exciting. It gave me an expansive feeling, like the kind of opposite of claustrophobia. That feeling is what I'm calling here ‘queer joy’.

The idea of queer joy comes from queer theory, which starts from the experiences of lesbian, gay, bisexual, and trans people, but has a much broader ambition to disrupt, trouble, and make strange everyday categories and taken for granted assumptions.

This disruption starts with the word ‘queer’, which was once a slur for LGBT people, weird, strange, peculiar, but is here reclaimed as a positive concept. Queer theory and other related critical theories help us to question what we assume we understand, and so develop new ideas and new solutions, usually by starting from the perspective of people whose ways of making sense of the world are not traditionally valued. Queer theory hadn't been invented when I was noticing my grandmother's categorisations, but starting from the perspective of someone with dementia, and asking what can we learn about the ways they categorise things, is a very queer theory kind of approach.

Lots of research about LGBTQ people is focused on discrimination and disadvantage. This work is really important, especially as the wider cultural climate is getting more hostile, particularly to trans people. But it is also really important to focus on queer joy, the positive and joyful aspects of not being straight or cisgendered. My moments of queer joy are moments when I suddenly saw something from a new perspective and that opened up new possibilities for thinking and for action. 
I'm going to talk about three areas of my work that have been sources of queer joy. I'm going to talk about researching ageing and sexuality, I'm going to talk about teaching at the OU, and then about the queer joy of being the whole of me at work.

Starting with research about ageing and sexuality. People often assume that older people can't talk about sex. This is ageist and makes it harder for doctors, nurses, and other care workers to raise the topic of sex with older people when they need to. In my late 20s, when I had a lot more hair, I worked for a charity supporting older people and I was asked to create a leaflet about HIV and AIDS. I decided that I should get a group of older people together to design this leaflet. You can see some of the group members here with speech bubbles in classic 1990s desktop publishing style. I was quite nervous about doing this, partly because I imagined that they would find it difficult to talk about, and it wasn't. They had loads to say. They really enjoyed the opportunity of talking about HIV and AIDS, and sex in later life more generally and we had a great time together.

But I also noticed that they continued to talk as if older people in general find it difficult to talk about sex. When I later decided to do a PhD, I wanted to understand how the people that I'd worked with had managed to talk so frankly and freely about sex, despite clearly knowing the norm that older people aren't supposed to talk about sex.

One of the conclusions I came to was that it was actually about how conversation and discourse works, not about people's age, skills, or personality. There were regular patterns in the way that older people talked about sex that enabled them both to acknowledge the norm that older people don't talk about sex, and then to disrupt it. So, for example, one person said, “That's very rude, I shouldn't be telling you that.” and then proceeded to tell you even more explicit things.

I suddenly realised it's about how talk works, not someone's age or their other personal attributes. When I first had this idea I was so excited I got up in the middle of the night to write it down. It wasn't about the person, but about the structure of the talk. That was definitely a moment of queer joy when I suddenly saw the world differently. 
What changes if we see this differently? If we think about people's ability to speak about sex as affected by the structure of the interaction, we can enable conversations, not just assume older people can't talk about sex. For example, leaping forward in time, we've recently completed some training materials for the College of Sexual and Relationship Therapists to help them better support older people with intimacy problems. Drawing on these ideas about how talk works, a counsellor could say something like, “Sometimes people assume interest in sex fades with age, but actually we know that's not true. Is sex something that's important to you?”, so enabling talk about sex by using that rhetorical framing of, “People sometimes think this, but we know better.” That's my first example of the queer joy of disrupting norms, both the assumption that older people can't talk about sex and the assumption that when they do, it's because of their personal attributes.

Another strand of my research has been about how we imagine personal and societal ageing futures. How we imagine ageing futures matters because it shapes both the present and the future. Our imaginings tend to be very individualistic and very binary. Either a feared future of decline, decrepitude and loss, or one that is basically midlife with whiter hair and a pension. This is a picture I found by searching for ‘a good old age’. There's lots like this out there, usually a different sex couple, often with grandchildren, doing something physically active, quite often on a beach. I don't know why beaches are so popular in aspirational ageing, but they are.

But, what if you're not in a different sex relationship? What if you don't have grandchildren? What if you're disabled or chronically ill and can't kick a ball? What if you're poor and you can't afford to travel to the beach, and where is community and wider society in all this? How can we imagine a good old age that's more inclusive of the real diversity of older people's lives, and that isn't just about prolonging midlife for as long as possible but also engages with the common experiences of old age, including disability, dementia, and death coming into view.

Just like with talking about sex, if you start from a different place, what seemed fixed opens up. I've done a number of studies where I tried to queer the starting point by asking LGBTQ people and feminists to reimagine old age, often using creative methods. By asking them to imagine a feminist or a queer old age, you don't just get different futures, you get futures that are more inclusive, more collective, more creative, and sometimes more joyful than the ones we usually imagine. For example, this participant was in her mid-60s when she imagined this future, which she specifies shows her 80th birthday. She's at Queer Pagan Camp, which is a collective alternative space with lots of the things that are important to her, like her cat and a collection of minerals. When you lift this flap, you see me and future girlfriend, two old women having hot sex on a summer night. So this imagining was important to her personally as a joyful vision of the future, but it's also important to all of us to queer our ideas about what old age looks like, what older people might want, and what possibilities we should create for our ageing population.

In another project, I asked people who identified as feminists to create visions of a good old age. Older women often report feeling invisible as they age, but in this study several participants queered that expectation by imagining powerful older women who continued to challenge societal norms. One person created this paper doll, which she describes in this quote as showing curiosity, zest for life, fierceness, speaking truth to power. She also explained that it has finger spreading hands for ears, because she expects to lose hearing as she grows older, so she's including future disability in her imagined future. I would love to show you lots more of these, including some which engage with death, which you'll hear much more from Erica in a minute.

But to summarise, if you start from outside the norm, if you queer the starting point, for example, by asking LGBTQ people and feminists to imagine a good old age, you can generate really different visions of what a good old age might be, and those visions can be both joyful and more inclusive of diverse experiences of later life.
The final area of my research I'm going to talk about focuses on older bisexual people. It's often assumed that people have a fixed sexuality, that you are either heterosexual, gay, lesbian, or bisexual, and that is many people's experience. But it's also quite common for sexual identities, attractions, and behaviours to change over the course of someone's life. An example from my research is someone I've called Muriel. She got married and had children in the typical way, but in the 1970s after she got divorced, she joined a women's consciousness raising group and, to her surprise, fell in love with a woman called Pat. Muriel started thinking of herself as a lesbian and they lived happily together for several years. Pat sadly died, and sometime later, to her surprise, Muriel fell in love with a man called Colin and felt very uncertain about how to describe herself. But in the 1980s, she encountered the idea of bisexuality and started calling herself bisexual. The relationship with Colin ended, and Muriel met another woman, Joan, and went back to thinking of herself as a lesbian because that was Joan's identity and she expected this to be the final relationship of her life. So, depending on when you asked her, Muriel would have given different answers to a question about her sexual identity and only identified as bisexual for a very few years.

People often describe their sexual identity in relation to the gender of their current or most recent partner, and that means that bisexuality kind of disappears. Lots of younger people describe themselves as bisexual and pansexual, but researchers studying LGBTQ ageing often struggle to recruit older bisexual respondents. There's several reasons for this, but another one of my moments of queer joy of suddenly seeing the world differently, was when I realised that it's partly because when we think about sexuality, we usually take a moment in time perspective. We ask people to tick a box to how they identify now. We don't ask them how they identified in the past, over the course of their lives, or about their relationship histories. That means that bisexual histories, like Muriel's, often disappear. The identities that people claim in the present moment are hugely important, and, of course, need to be respected. But it's also important for researchers and for health and social care workers to understand what has happened to someone over the course of their lives, especially as they grow older. By changing that lens from a moment in time perspective to a life course perspective, we can suddenly see lives that were always there, and that means that we can produce better research and more effective services.

I move now to the second section of this talk, the queer joy of teaching at The Open University, the OU. People don't often talk about their teaching at their inaugural lectures, but I want to, both because we value it so highly at the OU and because it's been a major part of my work and a huge source of straightforward joy. I love the creativity of producing distance learning materials, working in interprofessional teams to make something so much better than anything I or any academic could ever make on their own, and seeing students grapple with the ideas and succeed in their studies. In some ways, teaching at the OU is inherently all about disrupting norms. At its foundation the OU profoundly disrupted, troubled, and made strange assumptions about what a university could be and who could study for a degree. We say, “You don't have to have done well at school, you can be any age, you can study part-time from home”, and so on. This has increased inclusion and changed millions of lives in hugely positive ways, but we are not as disruptive to the sector as we once were. There are other online, part-time, and widening participation universities now. Indeed, the very phrase “widening participation university” is a piece of jargon and evidence of how mainstream this agenda has become, which is good.

But, my question to you, especially my OU colleagues and students is - How do we queer, disrupt, trouble, and make strange the ways we are a university nowadays in order to keep delivering our social justice mission? What are we not seeing because we are starting from a more mainstream position now? How can we listen better to our minoritised students, staff, and alumni in order to see the University with fresh eyes? I don't have any simple answers here, and it's a project that demands lots of different perspectives and inputs, but I am taking the liberty of having this literal platform to ask this question. Let's keep talking about this.

Another of the great things about teaching at the OU is that other organisations find our expertise in online and distance education useful. I've been involved in several international development projects that aim to support the sexual and reproductive health and rights for the most marginalised groups globally, often through co-creating online courses like the ones illustrated on this slide. So, for example, the left-hand one was co-produced with Frontline AIDS and trains activists to use a human rights monitoring system. The right-hand one was co-produced with the International Planned Parenthood Federation to support sex educators. For all these kinds of projects it's been vital to me that we try to disrupt the normative assumption that academics in global northern universities like me know best how to create learning materials for contexts so different from my own. This assumption is problematic because it simply isn't true, which can lead to learning materials being produced that just aren't effective. It's also problematic because it reinforces the colonial legacies that so profoundly shape our world. For these kinds of projects we therefore use participatory and co-creative methods where the end-users of the learning materials are involved as much as possible in designing the curriculum and the learning resources. We try to work towards what is known as epistemic justice, that knowledge is not only created by privileged and powerful groups, but also by those with lived experience of discrimination and injustice.

I'm going to focus here on one experience of queer joy on a project working with young refugees in Uganda. The project was conceived between the three organisations, the OU, Spice FM, which is a local radio station in Hoima district, Uganda, and Reproductive Health Uganda, a national charity. We wanted to find out what sources of information about sexual and reproductive health and rights were trusted by young refugees as the first stage of work to help Reproductive Health Uganda to provide better sex education. Once we had obtained funding we were then able to employ and train six young refugees to work as peer researchers. It's relatively common, even normative, on these kinds of international development projects to employ local people to undertake the fieldwork. But on this project, because we were trying to disrupt the legacies of colonialism and work towards epistemic justice, we also wanted the peer researchers to help design the research and analyse our findings.
This photograph is from an analysis workshop and shows one of the ways that we did analysis together through moving around Post-it notes on flipcharts. This was a very challenging project in many ways because of the topic and the context, because it was trying to do things differently and with a very small budget, and it would be fair to say that I was in a state of high anxiety for almost the whole duration of the project.

One of the many things I was worried about was that the focus kept shifting away from trusted sources of information to much broader issues around access to services, to education in general and to the impact of poverty. As the lead researcher on this project I was responsible for ensuring that we were going to deliver what we had promised, and I was worried that we were not going to be able to do that. Eventually I realised that my anxiety about the focus shifting wasn't a sign we were failing, it was a sign we were doing something right. It suggested that the peer researchers were reshaping the knowledge we were producing by widening the research focus to include these broader issues. This was an example of them having epistemic power and that changed the way we all thought about trusted information sources. We realised that trust in information sources isn't just about messages or what the sources are, it's also about material realities. Who you trust and what you can do with information depends on your living conditions. By increasing epistemic justice we produce better knowledge. Recognising that was a real moment of queer joy when what had felt like a problem suddenly became a sign of success. I suddenly saw the project and the wider issues around sex education completely differently. We were still able to deliver the project, but we did so in a way that we had not imagined at the beginning. 

At the end of the project the peer researchers made short audio clips about our findings which were then broadcast on Spice FM, the local radio station. I'm going to play part of one of those clips now, both to illustrate the point about the importance of material realities to sex education, and also to literally have one of the peer researcher’s voices heard during my inaugural lecture.

So over now to Leila Baale from Spice FM and then Miskat, one of the peer researchers.

[Recording]

“Young refugees need reliable information about sexual and reproductive health and rights and access to sexual health services, but they can't always get them. Spice FM Hoima, Reproductive Health Uganda, and The Open University in the UK got together with six young people from Kyangwali Refugee Settlement to do research into young refugees' needs and experiences. This is what we found out. My name is Leila Baale. In today's episode we ask the peer researchers how best they think we can deliver sexuality education to young refugees and which mechanisms we can use.”

“My name is Miskat Mariata Blessings. I believe that as a peer researcher a mechanism called peer-to-peer education will work better in delivering sexual education among young refugees. The peer-to-peer mechanism works in the way that they will be setting up a youth center or a youth meeting point in the community in the selected villages, respectively. There will be a need for hiring a peer educator who will be friendly, skilled, and has the expertise to talk to fellow youths in the community, and whereby the hired educator will have to talk to the youth about sexuality education in the community and bearing in mind that these youths, they are still young refugees who need such information. The verbal education about sexuality alone may be monotonous for them and they may end up losing focus. So I suggest there could also be involvement of their key play materials at the centre, like cards, Ludo, music instruments, among others, whereby during their break times these young refugees could relax with these materials.”

Having been thinking about the queer joy of teaching at the OU, I move to thinking about the queer joy of disrupting academia through being the whole of me at work. I've already talked about epistemic justice, that it matters who gets to do research and to create what is seen as valid knowledge and evidence, and that we will get better research and evidence if all sorts of people are involved. In some ways I am very much the kind of person you might expect to be an academic and so get to create what is usually seen as valid knowledge. But in others, I am not. I want to think here a little bit about how two of my personal characteristics in particular have changed the kind of knowledge I've produced, and how that might disrupt our understanding of what it means to be an academic.

The first is around parenthood. Of course, lots of academics are parents, but academia, like many other workplaces, expects everyone to be a kind of endlessly productive, disembodied worker whose personal life and personal circumstances are entirely separated from their work. It's fine to have children as an academic, it's much less acceptable for that to change how you work, still less to make you less productive. This is problematic because it leads to burnout and perpetuates gender inequalities, especially for people who are also marginalised in other ways. I was employed part-time due to parenting responsibilities for 15 years of my academic career. This means that my CV looks different, and I think it has taken me longer to become a professor than it otherwise would. Mostly I have experienced excellent support for my choice to be part-time. But I do remember an occasion when a senior colleague told me it would be impossible for me to be senior and part-time because you couldn't be ‘clock watching’. I resist this idea. I ward off this hostile discursive formation. We all need to be aware of the time we are spending at work in order to not burn out and in order to be full members of society in other ways.

This photograph dates from when I had just returned to work after parental leave and was finding it exceptionally challenging to be both an academic and a parent of small children who slept exceptionally badly, looking at my now enormous kids in the audience. We were planning a new module, and I brought in some of my children's toys to illustrate my ideas. So, for example, the rainbow flag symbolises LGBTQ issues in health and social care, and the children's book represents some experiences I had had with health visitors that I realised were relevant to the module's themes. Bringing in these toys and using them to think about module themes helped me to make connections between my parenting experiences and my academic knowledge, so that my parenting fed my academic thinking. It also turned out to be useful to the module team in the long-term because it was memorable, and there was definitely a queer, transgressive joy in bringing a load of kids' toys to an academic meeting.
One of my joys more recently has been mentoring and coaching colleagues at the OU and beyond in holistic ways that support them to work through their own version of what it means to be both an academic and a parent, or to be a disabled academic, or a neurodiverse academic, or many other ways of being their whole selves at work, and in this way to support epistemic justice and the rigour and validity of what we know.

The other personal characteristic that has had a significant impact on my career is being chronically ill since getting COVID in 2020. You might have noticed I'm sitting down to do this lecture, that's because I can't stand for 35 minutes, and there are many other major impacts on my work and the rest of my life. Doing this inaugural lecture means I'm probably going to have to spend tomorrow in bed. I have been brilliantly supported by the OU to enable me to work in ways that are more sustainable for me and to identify leadership roles that do not depend on endless back-to-back meetings, which I can't do. But it is a constant struggle and it always feels very vulnerable to make visible how impaired I am, how far I am from the endlessly productive, disembodied worker, even though I am hugely privileged in other ways, including now being a professor.

This might not sound very joyful and in many ways it isn't, but there is a queer joy in the way it makes me think about work and being an academic differently. To try to minimise my health crashes I have to regularly do activities that I find mindful and soothing. To my great surprise I started doing watercolour paintings several evenings a week. This helps to manage my health, but it's also opened up new ways of relating to my work. Although I've asked research participants to use creative methods to generate data for years, I only recently came across the idea of using creative methods myself to support the analysis of data and academic writing.
I'm finding it really helpful and productive to paint, with no particular skill, my thoughts and my feelings about data and publications. So, this image, for example, represents how I feel my writing voice differs from the writing voice of one of my regular co-authors. I'm the pinks and purples, she's the blues and greens. This colleague and I have an on-going commitment to reflecting on our work together as part of a feminist ethic of care and in order to produce better knowledge. Doing this painting helped me to think about some of the really subtle ways in which the knowledge we produce is shaped by our different writing voices.

Although chronic illness is really tough, it has also been a source of queer joy. Being forced to do things differently has opened up new ways of thinking and working. These ways of working matter beyond my own experience and my own pleasure in thinking about data in new ways, because if we broaden what counts as valid ways of knowing, if we make space for slowness, creativity, different bodily experiences then we can create more inclusive research and better knowledge.

That's some of the moments of queer joy that stand out for me in relation to research, teaching, and being the whole of me at work. When disrupting my assumptions and starting from a new perspective meant I suddenly saw something differently, which then opened up new possibilities for thinking and acting. It's not always easy to do this. We all get sucked into taking for granted the systems we are part of, and when we do try to trouble these systems there are sometimes personal and professional costs. But I have also, I hope, demonstrated that there can be joy as well in the new ideas and the new capacity for action that queering our assumptions brings. There are many different ways you can trouble, rethink and reimagine the taken for granted. In this talk I've used the idea of queer joy to exemplify just one way of doing so. There's lots of reasons I chose this concept, including the fact that a lot of my research draws on queer theory and is about LGBTQ issues, that it's Pride Month and I'm queer, and because inaugural lectures are celebratory occasions so focusing on joy seemed appropriate. 
But I do also want to note that in many parts of the world LGBTQ and other human rights, including those of refugees and disabled people, are increasingly under threat. This is not joyful and needs to be actively resisted. But it also makes it all the more vital that we hang on to the hope of better futures, personal ageing futures, societal futures and academic futures. Reimagining the future isn't just wishful thinking, it changes your capacity to act, especially when done collectively. One of the fundamental roles of universities is to help us collectively imagine and create better futures. I want to end by professing things don't have to be the way they seem to be, we can reimagine and try to change things for the better.

Klaus-Dieter: Thank you Rebecca for this fantastically rich, personal, and joyfully queer presentation we just heard. Thank you. I'm going to go straight to the second professor speaking today, Professor Erica Borgstrom. Erica Borgstrom is Professor of Medical Anthropology. She's internationally renowned for her research and teaching on palliative and end-of-life care, and her leadership in death studies. Her work showcases the value of social science perspectives and contributions to the field. She's the Director of the recently established Centre for Open Thanatology at The Open University. She's also a Fellow of the Royal Anthropological Institute and Senior Fellow of the Higher Education Academy. Her lecture’s title is - Learning from Death: lessons for how we make sense of the end-of-life. Please give a warm welcome for Erica Borgstrom.

Erica Borgstrom: You notice the spotlights are bright in the conference hotel room that you've walked into, and the air conditioning that's whirring around is doing very little to calm the tension that you sense. The goosebumps are on your arms. A suited man, his title suggests some kind of health policy role, walks on to the platform stage taking a centre position, flanked by two tall banners that declare, “Dying Matters”. He's looming quite large and leans to you, the audience, to joke that death, not even taxes, is the only certainty we have in life. Now as he waits for the audience's chuckles to peter out, he flicks on an enormous slide behind him to project slides after slides that demonstrate the death rates in the United Kingdom are going to increase from the early 2000s to 2040. He's citing this is due to aging demographics. But as he does so, he also talks about how the way we care for the dying in the UK is insufficient. It is somehow bad. Not only is death increasing, but people are getting help far too late. They're being treated in ways they don't want to be treated and with symptoms unmanaged, and they might not be dying in the places they want to die with individual wishes going unfulfilled. So what initially started as a joke turns almost into a warning. Death is not only universal, we're somehow also very bad at it. 
Fast forward 15 years later, you're in another venue, but it's much more cosy because there's curtains that flank the walls and it's a little bit more elegant. The spotlight is softer and the audience around you, who's very similar to the previous one, are sipping bubbly instead of filter tea. They're nodding along as well as the invited very respected guest speaker declares, without hesitation, question or nuance that grief is universal. The tilting of a head accompanies this, and the phrases that flow next, both by this speaker and others, that suggest that too many people are suffering alone because the universality of grief is being under-recognised in the UK, and that if we don't talk about it more and do something about this, we are going to have incredible adverse effects as a society.

Now I've been to both of those events, and I've actually been asked to speak at some things like those. There's a recurrent message in these, that despite being a world leader in end-of-life care and in bereavement support, what's currently happening in the UK and in similar other countries around death and loss is somehow woefully insufficient, and that change is therefore needed, especially because death and grief are universal.

Such calls for change invite us as individuals, societies, professionals to really start to think how can something be different? How can we reimagine? But as an anthropologist I'd say before we can start to do that, we actually really need to consider what are we even thinking when we talk about death and grief as being universal. So I'm going to ask you as an audience, individually and reflectively, to think about what does it mean when you hear the claim that death or grief is universal? What notions of death and grief does that bring up for you? I'll pause here for a moment to let you consider that.

In the work that I have done and asking this type of question to lots of different people and reading things, there's a sense that at times claiming it's universal, that death is universal, loss is universal, can on one hand bring a sense of unity, that regardless of if we've had a personal experience or not, it exists out there and it's something that touches us all, it makes us somehow human perhaps. But if I were to get you to talk to each other about this, we'd start hearing differences in terms of how you responded to those questions. Different experiences around death and dying, and they might have been informed by what you've lived through, what you've read, heard about, but also what other people have told you. All of those are informed also by some assumptions that you have, and those influence how you think about it. One of the things that comes up a lot around these assumptions when we think about death and grief in these very universal terms, is that somehow people assume death is bad and grief is sad. These assumptions are often very taken for granted and can be quite ingrained for people and difficult to challenge and they definitely shape what people think is possible. We can see through the opening scenarios that I started with that those assumptions can be held across spaces and time.

It's important to remember that you'll have thought of something different from others and if I were really to get you to speak to each other, you might actually hear something that quite surprises you, or something that you could not have even ever imagined yourself until someone else told it to you. So claiming that death or grief or both is universal can actually unintentionally obscure the diversity in how people think about and respond to death, including how they may want to die, care for others, or how they might want to grieve. If change is something that we're being called to do, I invite you to consider what assumptions there are at play here and what the consequences of those assumptions might be. In doing so we can start to create spaces and moments where reimagining is possible.

The first lesson of my talk today is to encourage you to recognise that there are these assumptions around death and grief, and also any of the other terms that you might link to those because those are actually also very culturally specific. These assumptions are often very taken for granted and can be presented as commonly held, but not everyone will have the same assumptions. Throughout life take some time to consider what they are, what they're informed by and what are the implications such assumptions might have, both for yourself and for others, and the actions that might take on from those.

As an anthropologist trying to figure out such assumptions is like the cornerstone of what I get to do, and it's why I really love my job as an anthropologist. If you're not familiar with the term ‘anthropology’, it's just a fancy way of saying a study of peoples and cultures from individuals to society and across time. Our approach as anthropologists is summed up usually in three ways of doing research. One is flipping things on their head, distorting them slightly, particularly things that are taken for granted, to examine them differently. The other is to try to understand the world from people's points of view, from the way they experience it, but also the point of view of those who might shape the world in different ways, including people who are in positions of power. 

The third thing that we do is we like to make connections between people's everyday experiences and what matters to them, and some of those bigger picture issues and the systems and global elements, including policy. In doing so that enables us as anthropologists to make sense of what matters to people, what they're doing, and how that is being done and made possible in different contexts, as well as the potential for different relationships and systems that might sustain the very things that people are seeking to change, and also to understand why certain change can have unintended consequences. A lot of my work on palliative and end-of-life care has looked at some of those unintended consequences.
Essentially then, as an anthropologist, I get paid to be professionally curious and flip things upside down. I'm very biased in thinking this, but I would say it is a very fun approach and it's incredibly fascinating, and it leads to so many different possibilities for thinking about what is possible and what is there. It's resulted in lots of different projects that I've done, and I won't cover them all today. Some will be discussed directly, others indirectly, but you're very welcome to find my research and teaching online. Lots of it is there, including stuff I've done with OpenLearn and then our OU BBC co-productions for television and radio, and you're welcome to email me as well about them.
But predominantly over the last 15 years or so, my focus in teaching and research has been on death and dying in the UK, specifically palliative and end-of-life care. Being an anthropologist looking at those topics is like being invited to step through a door that is often closed to people until they're invited in, either through illness, grief or care. I've spent time with people who are expected to be in their last year of life figuring out what it is like to be near dying. I'm incredibly grateful for those who have invited me into their lives when those days can be rather short. I’ve also spent a lot of time with people caring for the dying, whether they are family or friends, neighbours, professional carers, doulas. I am grateful that they answer my very naïve questions and teach me at times to go silent. I am incredibly grateful for the healthcare professionals that let me literally shadow them in their day-to-day job, and sit in their meetings to see how they make decisions and talk about care.

I’ve also spent time understanding the world of policy that shapes what is and isn’t possible, both for those who make policy, but also those who implement policy. I have done lots of research about the different guidance and documents that are supposed to be shaping what is and isn’t possible for care.

In my work I often adopt what’s known as a ‘critical approach’ to medical anthropology. This doesn’t mean that I am critiquing or passing judgement and saying if something is good or bad or right or wrong, but a critical approach is often about highlighting those connections between everyday and the bigger power structures, thinking about who would be included or excluded, where does power lie, where is change possible, but also to reflect on what care might reside. In doing so, me as well as other anthropologists in social sciences, can create ways of understanding that generate pauses rather than immediate jumps to solutions.

Through this anthropological approach we can begin to start seeing the very complex cultural web in which death is part of. I do say ‘we’ because research is a collective endeavour, although anthopolgists do like to do work by themselves quite often. I am very, very thankful for all of the people who have been with me along this journey practically and intellectually and supportively. In this I really want to stress the importance of friends and family and close colleagues that helped keep one going, because as Rebecca mentioned earlier academic jobs are not really for the faint-hearted, and can be quite taxing, especially when you are researching the types of things I do. Technically according to social norms, I would not be the person you would expect to see talking about death and dying in this way. Most people talking about palliative and end-of-life care in this country are doctors. People talking about grief and bereavement have a psychology background, neither of which I have. Statistically most professors in the UK are male, much older, non-disabled, predominantly British, and many other boxes that I don’t tick. So it is a privilege to be here, but it does require more than just myself to be able to be here. Thank you to those present, online and no longer with us who has made that possible. I was also very importantly warned that being pregnant and having children so early on in my academic career, I’m pictured here handing in my doctoral thesis, would be a death knell to my academic career, and that being a female academic with young children would absolutely shatter me and I would not make it to professor. I am proud to report that I did it before I even turned 40, so the people that said that I proved wrong.

I am also here dedicating this talk to three people who were very important in my life and whose life and death and relationships with me have taught me a lot. The first one is my grandmother Fern who shared her hospice diet, as she called it, of Molten pie with me while I was doing my PhD. My friend and neighbour Rita, who was never afraid to tell me that I was working too hard for far too little recognition or pay, but was also very generous in allowing me and my children to hang out at her house many days, and my Uncle and godfather Neil who was a copy editor by trade and taught me how useful and cool an em dash could be before ChatGPT gave him a very bad rap. They’ve been three very instructive relationships in my life, as well as many more that have helped me to understand the three topics that I’ll focus on more in my talk. The end-of-life, grief and what it’s like doing sensitive research. 
I am sitting with Paul on a park bench a bit like this but not this exact one, and it’s sunny. He keeps flipping his cigarette packet. All I see is this white spinning on a background of green. He’s monologuing, as he often does when we meet up, about how his family is doing. He tells me how his wife and son have been getting on, and he quickly follows that with how everything he does is for them. His previous jobs, his now current frugal shopping trips, and how he is trying to secure a home for them. Everything he does is for them, expect smoke. He shrugs his shoulders, that is for him and he flicks that cigarette packet once more. Without missing a beat, Paul then shifts to tell me about all his recent clinical appointments that he has had for his cancer care. He knows I’m interested in these because that’s how the hospice introduced me to him as, “the person from the university who wants to know about your care,” and if words could teasingly poke at my ribs the way he said it then, it would have done just that. His appointments interest him too though, he views them as quite peculiar affairs, and when I told him about how anthropologists do their jobs and like to make the familiar a bit strange, he started experimenting with writing about his appointments as short stories, pretending to be an alien in a new formed informed planet. Collectively his appointments are now like a full-time job for him, between the waiting and preparation for them, the time he’s spends in various clinical spaces talking to lots of different healthcare professionals, and the amount of recovery that is required after each one. He reflects that these appointments create both a sense of urgency and tedium, and around which everyday life as a 40-something year old man with a family, is somehow just supposed to continue because the grocery shopping still has to get done, he chuckles and again flips that cigarette packet. We are silent for a bit. I notice I am a bit uncomfortable on the bench and we sit. Then without looking at me, he tells me how his consultant visited him during his most recent infusion. He likes her, he thinks she’s solid. She made a remark though that he found a bit odd. She said something like being surprised that he’s been doing this for a year. He was surprised that she seemed surprised, because surely that was the point of the treatment, to keep him going there. But now looking at me he admits to chewing over those words, that there was something about them that he couldn't just let go of. He was wondering if there was something significant to that reference to time. He knows he's not getting better, the treatment is not fun, and he whispers that he's been feeling worse. He trails off for a bit, pondering, and then wonders out loud if what the consultant said links to something a nurse mentioned to him earlier in the month about him finally getting around to doing that advanced care plan that he should have done a while ago.

I know there's a link because since 2008, in England at least, the end-of-life care policy has been encouraging clinicians to identify people who may be in their last year of life, like Paul. The intention of that identification is to get them to start thinking ahead and to make plans to consider and actively shape what the ‘before I die’ can look like.

This is an example of attempts to change practices in how dying and care is managed to avoid those problematic deaths that the policymaker that I was talking about at the beginning was referring to. In the medical world knowledge and action are incredibly closely linked. When dying is acknowledged and recognised, it opens up a possibility for different types of action that can include stopping treatment or shifting focuses to perhaps quality of life or other forms of care. It's a shift from managing dying, through delay or avoidance perhaps, to managing dying by trying to make the circumstances in which it occurs somewhat good or informed by a person's individual preferences. Striving and providing a so-called ‘good death’ is actually a key tenet to a lot of palliative care values and what they do. Palliative care is a particular type of way of doing medicine and end-of-life care and underpins end-of-life care policy in this country and in many others.

However, achieving such good deaths, striving to meet those values, is not so straightforward. There are several recurrent themes in the research that I do that come up that challenge the ability to do that. For example, how do you have such conversations that recognise dying and acknowledge it? Now I've seen in my work that sometimes professionals, patients, families, friends find that difficult, sometimes not. Sometimes people are actually referred specifically to palliative care to help them have those conversations and to do such advanced care plans, or people might even hire doulas to help them make sense of it all. Regardless though, I've lost count of how many times professionals have told me starting such conversations seem to happen too late, or people like Paul don't seem to be engaging.

Advanced care planning then presumes people want to make choices or have preferences about what their future looks like. But another theme that comes up in my work is that is individual choice in death even possible? I've watched how some people think that it’s absurd to even think we can have such choice, where others will fight incredibly hard to have very specific interpretations of choice be represented, including we've seen around assisted dying.

When I spent time with people who are supposed to be making such decisions, or watch how health and social care professionals wrestle with what preferences may or may not come up, it's incredibly interesting to notice how something that's supposed to be an individual choice usually reflects a much more distributed or relational way of thinking about what is important. Someone like Paul might choose to keep doing treatment because he thinks it's the best decision for his family, even if for himself it might not be what is great for his body.

The third theme that comes up a lot is that even if there's a plan and people know how to do it, it can be incredibly tricky to implement it, or dying sometimes just happens much more quickly than was anticipated. As dying unfolds, the control is realised as an illusion, and even with the best navigation and preparation, people can feel like they are drowning. Now, this realisation is particularly poignant for the health and social care staff that I've worked with at times, like Jane who, when I was interviewing her about a project about policy implementation, she reared off onto what seemed like a tangent to tell me about the death of her father. She felt it didn't match up to what she knew was possible because she was a palliative care nurse and a service manager. She knew how to achieve a good death, but for her father she couldn't do it. She told me how she struggled to convince her siblings that her father was dying, even though they all knew about his poor prognosis and that some treatments could in fact be futile. She also said how her father didn't want to be a burden but was willing to keep going on with things, even though that meant caring was incredibly hard. She also talked about delays in discharge and the difficulty in co-ordinating different community services and equipment. It was even too difficult for her then, an expert in this field, to successfully navigate these multiple people's expectations and the complicated health and social care system. Jane expresses a wish that I've heard many people echo, in that if only everyone could pull in the same direction.

It's a personal story, of course, of hers, but it comes up in lots of different times, and it stresses how impossible it can be to always get it right, even when you know what is feasibly potentially possible, and in theory you know how to achieve it. But it is also interesting to think about how there are certain assumptions about what is right, what is the direction we should be pulling in. I often wonder if she would see people like Paul as pulling in the wrong direction.

End-of-life care in the UK context is really currently premised on the idea that when dying is identified and accepted it can be planned for and optimally managed, enabling people to have this so called ‘good death’. This assumption creates expectations that people anticipate and make decisions about their end-of-life, both as individuals but also for services and the families around these people, and that we all enact such plans. However, and perhaps unsurprisingly, people, whether they're those who are in their last year of life, or if they're working in organisations or if they're around someone who is dying, may actually have very different interpretations and expectations about what dying is, when it can be recognised, if you should do something about it and what should happen afterwards. That can include whether or not they wish to engage with palliative care approaches to end-of-life.

My second lesson is that dying and death are often assumed to be something that can be managed, but there are different approaches to how to do this and these differences can create some misalignment. If we were to then consider people's various perspectives, including their expectations about how dying should occur, we start to realise there's no single optimal way in which dying can be experienced and created.

When it comes to grief there are very popular understandings of what it is and what it looks like to grieve appropriately or optimally even, or what might be considered normal. I'm going to assume that most of you have heard of Kübler-Ross's model of grief. You might know it as the five stages: denial, anger, bargaining, depression, acceptance. Her early theorising about that model actually came from studying people who were dying in hospital like Paul, not people who were grieving. She was trying to make sense of how people prepare for death. But since then it's been reinterpreted to make sense of how do people understand loss. It's one of the most popular models of grief that is thought about in the UK, in the US, and other countries like this, but it's often misunderstood. People thinking that it's a linear process and that it somehow represents internal states that we individually go through when we encounter loss, and that these emotional states are all that represent our grief.

Up until the COVID pandemic most of my work focused exclusively on end-of-life care, this sort of dying phase, and only really touched on loss and grief when that came up in there. However, very soon into 2020, I was being called on, as my expertise in anthropology and death studies to think about death and grief, and many people wanted to collaborate on projects. Collectively, we were struck by the volume of loss that was being witnessed and present during the pandemic, particularly in the early stages, but also how it was and was not being recognised in different contexts or responded to even within organisations or the news. When it was present in things like the news, it was considered something that was private and an individual matter and somehow being problematic at the time, with psychologists and bereavement specialists warning that the impact of bereavement measures, like not being able to go to the hospital to say goodbye to somebody who was dying, or the impact on how funerals were being done would lead to lots of people having prolonged, complicated or dysfunctional grief. All of this started to raise questions about whether people actually knew how to grieve or if they could grieve in the current circumstances. There were suggestions that individuals were at risk of getting stuck in certain stages of grief.

At this time grief was not unfamiliar in our own household. It also raised many questions, albeit slightly different. I vividly remember sitting on the bottom step in our house with my eldest child. Our skin was warm and touching, and I can just see and feel right now how close we were. I'm holding an activity sheet she had just completed as part of the home-learning we'd been doing. It's a stick figure laying on what I presume is a bed. I wasn't expecting this image in relation to the activity that was set, and I don't know what it's supposed to be about. She tells me it's Rita, our neighbour who had died a few weeks before. My child had been thinking about Rita and was now unsure of how she was supposed to feel and what she was supposed to do. She had some questions. Not known to stop at one, my child gave me many, many questions and I'd be lying to you if I said I expertly answered them all then or even if I could now, even as a supposed death studies expert. I won't give you all of those questions because there were so, so many, but some of them were like - Did Rita not want us at her funeral because we didn't get to go? Did she not think we cared about her? Should we tell my child's teacher that Rita had died? Or do teachers only care if pets and grandparents die? Do we get to keep these keepsakes that Rita's daughter had brought over that my children used to play with and Rita had once bought on a holiday? If we do get to keep them, can we keep them forever?, and, “Mom, don't declutter them at some point, please.”

I'm not the first to marvel at how children can grapple with death in ways that adults often presume is impossible, but that moment on the stairs gave me so much insight into what is and isn't supposed common knowledge and expected knowledge around grief, something that's supposedly universal. Also how we talk about it, and how we learn how to grieve, what to feel, say, and do, both in our own experiences as it's unfolding, but also in sharing those experiences with others and learning from how they grieve. Should we tell her teachers? I realised, did any of my colleagues know? Rita meant something to me too and workplace bereavement policies rarely have a clause for friends, let alone neighbours. Around this time an OU colleague at the time, Sharon Mallon and I, were talking about how despite there was loss going on, it wasn't really present in any of the workplace conversations we were having. We knew colleagues around us, students, and our alumni must be feeling something and going through different variations of grief.

We began thinking of the ways we could maybe give space to some of this loss, not trying to solve it or make it magically better, because that's not possible necessarily with grief, but to create a sense of community when people may otherwise feel alone and unseen. So we decided to edit a collection of written accounts by students, staff and alumni from the OU. The book is pictured here. It's called ‘Narratives of COVID’. It's available for free online or as an inexpensive paperback.

As part of my lecture today I want to read a bit of the foreword that was written by our then Vice-Chancellor, Professor Tim Blackman. He says, “This remarkable collection of short essays which captures a moment in the COVID pandemic in intimate and profound terms, is as moving as it is insightful. A deeply human book about impossible choices, death and dying, regret and grief. Some of the authors comment on how writing about their experiences, in often very personal and candid ways, was itself cathartic. I think many will also find that true of reading the stories, whether reflecting on loss that is recent or long past but still present. What comes through in many of these essays is how feelings of grief can be so complicated by the circumstances, yet there is much that is positive among this awfulness.” That's the end of his quote there.

One of the things that strikes me about this collection is that it demonstrates that what grief is and how people grieve and make sense of their grief is much more diverse than what is summed up in the very popular understandings, like in the five stages model. The narratives give us plenty of examples to consider how we may reimagine our understandings of grief, including that it is not all just sad. Remember, he says, “there’s positive among the awfulness.”

As editors we found that not only did those who wrote or read the text find them somehow useful or cathartic, but we were also reached out to by others who found it beneficial to know that such a possibility to share their grief in the University space was available to them. The mere act of someone being willing to witness their grief was valuable.

It brings me to my third lesson of today is that many may think that grief is a private matter or something you work through as an individual, often it's thought about as quite emotional, but it can be other and more than that. How we grieve often relies on learning from others, experiencing our loss as being recognised by those others, and having the opportunity to connect socially.

The third area of a lot of my work is on what it's like doing so-called ‘sensitive research’. Many people assume that the type of research I do because it's about death, dying, loss, grief, bereavement, is somehow inherently sensitive and that talking about such topics therefore must be difficult. I'm often also on the receiving end of remarks that suggest or state quite clearly that I must be at least a bit weird or morbid or very thick-skinned to be able to do this type of work that I am and people are confounded if I seem happy or joyful. Unlike the school ground rhyme that ‘sticks and stones may break my bones, but words will never hurt me’, such assumptions have incredible power, particularly in the research space because, for example, ethics committees and healthcare services may scrutinise the types of projects I design for fear that taking part will unduly upset a participant. Or they might restrict who's allowed to receive project information or take part in a research project, or how soon after a bereavement I might be allowed to speak to someone.

Within such frameworks then I'm also expected to expertly manage any discomfort or presumed harm that might come from researching death and grief with participants, with very little consideration often given by those exact same committees about the impact doing so may have on me, both in the moment and longer term. I'm supposed to somehow separate any sense of being a person in that space other than being very personable and responding to someone being upset.
To give you an example of how I've wrestled with this notion of what it's like doing sensitive research and this idea of people being vulnerable participants, I'm going to share an excerpt from a paper that I wrote with a dear friend and colleague, Julie Ellis, that we wrote about sensitive research. The bit I'm going to tell you about today is based on when I was caring for my grandmother who was diagnosed with terminal cancer just as I was finishing my PhD research. I had just spent 14 months spending lots of time figuring out palliative and end-of-life care in the UK, spending a lot of time with people who were in their last year of life, witnessing their deaths and here she was and she too was dying. I was able to take a bit of a break from my research to be with her. She told my mother she was quite excited that I might come and study her and her dying, and I was quite alarmed actually by that. She didn't say it to me directly, but I was alarmed because I realised I just wanted to be there and eat pie with her. 

What I wrote in the paper was that it was only later that I realised that my desire to separate my personal experience from my fieldwork mode was because I thought I needed to protect something and someone. Me and my experience of personal death, I had, through the way that research is framed in death studies and healthcare research, seen myself as a soon to be bereaved granddaughter as someone who needed to be protected around the time of death, someone for whom intrusion from research had to be limited. I had projected myself as a vulnerable person because that is how participants of my research are often portrayed by others. But I was now in a similar circumstance. But without this notion of vulnerability I did not necessarily feel I was particularly emotionally vulnerable because of being a carer to a dying grandmother. It was because I thought I should be vulnerable that caused me to become unsettled.

Those who knew both my research and personal situations did not view me as vulnerable. In fact, the opposite was often presumed that if I could handle it professionally, then personal encounters with death would not be particularly difficult. Due to studies, and thankfully my grandmother living a bit longer than we expected, I came back to the UK before she died. After agreeing with the hospice that she would wear one of those buttons for if she fell, and she was really angry with me about that. But this focus on potential vulnerability in sensitive research like death studies is often around this fear of discomfort and emotional distress. It quickly at times assumes that people don't want to take part, or we shouldn't think about it because it can be so upsetting. But such assumptions fail to recognise the possible joy, laughter and connection that can be present, and also the duality of being a researcher and someone who experiences death and grief in their own life.

Importantly though, I've experienced in a lot of my work that such assumptions can create a silencing effect, affecting both what we know or can know and how we show up for others. It reminds me of a parallel encounter that I had during some of my fieldwork. I'd been visiting Albert, a man in his 80s, who was in a care home. He had dementia and was estranged from his family, partly due to his dementia. With his permission the care home staff were able to share his care records with me, and they were very keen to point out that they had been trying to do advanced care planning with Albert. In his notes it said, and I quote, “Doing so caused distress. He did not want to talk about death and dying.” Full stop. That was it. So his advanced care plan was summed up in that he doesn't want to talk about it. Instinctively I raised an eyebrow, and I was like, “Oh, that's strange, because every time Albert and I have a cup of coffee or tea, those topics always come up. Whether about the time he was in the war, his experiences fox hunting, his concern about what his legacy might be, including with his estranged family, and also how he would joke with a smile and a tear that he expected to leave the care home in a black box and he would be grateful if that would happen because of a heart attack.”

He may not have responded then to the care home staff when they directly asked him to imagine what his end-of-life could be like, but that did not mean one couldn't figure out what mattered to him, what he hoped, what he valued, what he feared. One just perhaps had to ask different questions or listen differently in other ways and be okay if a range of emotions in different scenarios arose. 

The fourth lesson is that claiming something is sensitive can project this discomfort and vulnerability onto others, which may not necessarily already be there. In doing so we can close down possibilities both for what we can learn and know and reimagine, but as well as how we might understand or even support others on their own terms. As someone who studies death in these types of conversations, I've also somehow become someone who enables others at times to question what it is all about, but also to be a bit more comfortable with this supposed sensitive or difficult topic. My curiosity and comfort around death can apparently be infectious and norm breaking at times, like giving permission to my youngest daughter to have a camera at my Uncle Neil's funeral which enabled her to capture this portrait of her grieving mother, as well as many others of our family at the time, and embracing her desire to have quite lifelike Halloween decorations in our front garden at times. Much to the shock of some of our neighbours, I'm sure.

My expertise though can also be called upon beyond my professional work and in personal ways in other times, like serving a bridge when people might be going through a rough patch. It might be when someone has a question about what is palliative care, how do you access it? Or the friend that someone calls when they want to actually express the frustration of how long dying might be taking or how tiring and exhausting caregiving can be, or when they realise that the death admin has taken up their entire dining table and they haven't eaten properly for days.

I can't claim that I always get it right to know what to say perfectly in those moments, but I do see them as a moment of connection and I hadn't anticipated that my professional knowledge that I gained through all the research and teaching I do can have such impact in my personal life. I'm really struck that through all of that I also can be the friend that people can call up and laugh with when they marvel at how absurd or different death and grief is than they expected. It can be that recognition in the moment that death is bad, sad and everything in between, and that can give a sense of relief to people.

As I lean in to figuring out how societal, cultural and individual assumptions shape what we do, and I encourage you to do the same, we then start thinking about what is possible, how we feel, for better or for worse, and it's allowing us to then think about the incredible diversity that is there, the different multiple understandings of what matters to whom, when and how, and what it can mean for how we then respond to the end-of-life. By doing so with curiosity, it generates a space for understanding and accepting this diversity and difference, but also creating moments for connection, recognition in these so-called supposed universals of life.

A lot of my work demonstrates these different ways, but I hope it leaves you with something to do that. You may have noticed that none of my lessons tell you exactly what to do differently, how to reimagine death differently, or do grief differently. But if I've done my job well, you'll hopefully leave with a piece, perhaps something you chew over a little bit, a bit like Paul, that lets you question, think and wander further. As I step away from this specific spotlight, I leave it now onto you to look at what's taken for granted and how those assumptions, what is taken for granted, really shapes what unfolds and what is possible. If you want to explore more there's lots out there. Thank you.

Klaus-Dieter: Thank you very much for another very rich lecture with lots of sensitive storytelling. I'm sure that you've got lots of ideas in your head that you need to ponder about. If we just go over now, we have a short time for questions and answers. We will get potentially some from online, but we're here in the room. If you have a question please wait for the microphone to come to you. If I can ask you to keep it short, because we're here to hear from them, not from us that ask a question. I can also see that some people might just have to think through it first. 

Question: Fantastic lectures both of you. This is for Erica. I was wondering have there been any examples of how death is managed outside of Western culture that you were particularly inspired by or thought was really balanced or really grounded?

Erica: A wonderful question. There's a lot in there. I think it's quite interesting when we think about how in different cultures death is sometimes not thought about just as a biological event, but a much more social event so there's a lot more rituals that happen around that. Also, in terms of who is responsible for the care of the dying, shift. So in the UK there's a lot of expectation around certain health services, but also family. But in other places it can be a lot more communal. We've done some great stuff with OpenLearn that shows some of the rituals that people have done around death and grief and memorisation. I can recommend those if people want to experience that.

Klaus-Dieter: Thank you. Also, people watching online, if you have questions please do send them to us.

Question: There was one earlier on for Professor Rebecca Jones. Do you have any advice for early career and queer researchers starting out in academia? I’ll ask a second one for Erica. There was one about whether you have your own death care plans and can you remember all your passwords?

Rebecca: Gosh, advice for early career queer researchers. I mean in lots of ways it's the same advice I would give any early career researcher, which is find community, support yourself, make sure you've got wellbeing. Resist the impossible pressures, refuse the impossible demands. I think queer people are very diversely positioned. I'm a very privileged queer person. Someone who is visibly trans is going to have a much harder time as an early career researcher than I did. But I would find community, get support around you. Possibly look for a mentor or a coach who gets it, which doesn't necessarily have to be another queer person, although that can be really helpful but I think mentorship and coaching can be really helpful.

Klaus-Dieter: Erika, your plan?

Erica: Advanced care planning is often just about that care in the dying phase, and then other people will talk about future care planning and funeral planning. I'm a bit sceptical about some of that, partly because I know how often people plan and it doesn't quite work out, or it puts a lot of pressure on the families to try to fulfill those wishes, so I don't have very strict ones. I'm also not very good at remembering passwords at the best of times, so they are predominantly saved somewhere but it's interesting. The other thing I would say that I've recognised in a lot of my work is people's ideas and preferences do change over time particularly in those last few months of life. So even if you have made some plans, you might want to be open to the idea that those could change.

Klaus-Dieter: You mentioned curious in your talk, we have to stay curious until the very end. Is there another question here in the room?

Question: I have a question for Erica. CS Lewis said that grief feels like fear. In view of that and the different types of grief that we experience as a person who's dying or as a child facing the loss of a parent or another relation or friend, how do you see cultural differences playing a part in that?

Erica: There's a lot of work on cultural differences around grief, including whether or not cultures have even a word for grief or if they see it as something that is emotional or if it's a more socially displayed thing. So I think there's a lot of different stuff. I would say, because I focus predominantly on UK contexts, some of my work is not as rich in that area, but I'd recommend some other OU colleagues that work on that, including several colleagues that work on what's called an open societal challenge around existential disconnections, where they're looking at decolonising bereavement studies in the context of the climate emergency and how we might understand grief and bereavement differently.

Question: Would you agree with the CS Lewis view that grief is fear?

Erica: Not 100%, no. I'll leave it there and we can catch up later.

Question: First one is for Professor Rebecca Jones. How can we queer the norm in online communities with distance learning?

Second question for Professor Erica Borgstrom. Which funeral practices, whether in British or other cultures do you find interesting ways people cope with grief?
Rebecca: Goodness, I'm not sure I can answer that one because online learning happens in lots of different ways and different contexts and with different people. I mean, it is absolutely normative now. I think it's a good time to think about how we're doing it and how we can do it differently and better, but I don't think there is single answer. If we're thinking about us as the OU, as I was saying, I think it's a process. I think we need to be listening to minoritised staff and colleagues and alumni, and that's what helps us to see the new things that we can't see.

Erica; I'm not going to claim that there's any particular ritual or rite or thing you can do around a funeral that will be good or best for everyone. But one thing that I realise that my family do that is definitely not the norm here and can be quite interesting, is we tend to have, when possible, an open casket funeral so you can see the dead person, you can touch them, you can talk to them. I have personally found that very beneficial. It is perhaps also one of the ways I can engage with death and dying in my work that I may not have been able to if I hadn't had that experience growing up.

Klaus-Dieter: We've got three questions here I think, and then we have to bring it to a close.

Question: Thank you so much, both amazing lectures, thank you for indulging us on that. You both mentioned in different ways the productive worker, so Professor Rebecca Jones, you said about we've got to be infinitely productive. Professor Erica Borgstrom, you said about policies kind of give you permission to grieve and permission to be unproductive, but maybe not if it's a neighbour or a friend. So I wondered what would you love to see change in workplace policies when it both comes to your respective acknowledgement of this perpetual 24/7 worker?

Rebecca: I want to say that I feel comparing to colleagues at other universities, the OU has brilliant policies around things like part-time working, and adaptions and reasonable adjustments. I really don't think I could be a professor at any other university with the chronic illness that I have because I don't think any other university would be as flexible. The fact that I can work from home makes a huge difference to me. So I don't think I have a massive thing. There are little tweaks I would make. There are ways that, particularly around being part-time, there are some quite technical things about what counts that I would tweak. But I wouldn't have any huge differences at a sort of OU policy level. This is very much the work of some of my colleagues, Lindsay and Helen, in the audience here. I think the way that time is marked for PhD students is really problematic because crip time, the time that disabled people need to do a PhD, is typically longer than a non-disabled person, and the PhD clock is completely inflexible. You can have this amount of time, and then if you don't finish you're out, which is worse than academia. It's fine that it took me 20 years after my PhD to become a professor, nobody cares, but I couldn't if I'd been ill at that point with the PhD clock. So I think temporality is one of the big areas especially in relation to PhD students.

Erica: One thing I'll add to Rebecca's is also, although people may be given permission at times not to be seen as productive, it can catch up, right? So it might only be a very short period of time, and we are still measured often on certain outputs. My colleagues and I have done some work about staff in higher education institutes experiences of bereavement and bereavement leave. A lot of them don't even claim it or know it exists because they think there's this pressure to be at work or that it's such a private matter you don't do it, and that if they do have it, it might not be sufficient in length of time or workload is not covered. So you could have time off, but you're actually not given permission to be unproductive.

Question: This is a question for both of you. There's obvious overlaps between your work which I guess is the reason why you've done this presentation together, like challenging norms, looking at things from different perspectives and exploring those different perspectives. Have you got any plans to work together further to use your combined expertise?

Rebecca: This is something we say to each other about every five years, or more frequently. We did make a film together, didn't we, with the OpenLearn team about advanced care planning that featured a same sex ex-couple, so that was kind of pulling our two expertises together and that was loads of fun.

Erica: The film is called ‘Life or Death Decisions’. It’s on OpenLearn and YouTube, I believe, and it's embedded also in an interactive, so you can explore some of the things. Rebecca and I will email each other occasionally. I will say I'm plagued by a very busy calendar and inability to juggle lots of things. It takes time.

Rebecca: And I'm chronically ill.

Klaus-Dieter: Okay, so we'll have one last one, and all the other questions, please hang on and you can ask them directly as we will have to close.

Question: First of all, thanks professors for such a masterclass in queer joy and death and dying. My questions are - How do we make the importance of joy and humour in grief more visible, queering the sadness? And - Is there value in applying a life course lens to grief that allows us to examine the grief of children?

Erica: Again, for me it's really recognising how our access to doing some of the research in this area is sometimes really restricted by certain assumptions about what it is like to grieve and bereave and notions of people being vulnerable because if you do really want to query it, you meet people where they're at, and they can be having experiences of joy, confusion and all sorts of things. So there's ways of doing that. There's a lot of interesting stuff around creative methods that might be doing it. John and I in the audience have been working on stuff around neurodiverse experiences of grief, which I think is one of the ways of doing that. I'm sure I'm going to say I've totally forgotten the second bit of the question already.

Question: The potential value in applying a life course lens which allows us to examine the grief of children?

Erica: Well I think similar to what Rebecca was saying in her talk about if we take a life course perspective around sexuality, like people's experiences shift over time. Their labels for it shift over time. Our societal terminology and ways of thinking about it also shift over time, which influence how people think and talk about it themselves. So there is a lot of value in doing that. There is interestingly some work on childhood and young people's experiences of grief, particularly of a loss of a parent or a sibling that goes slightly over time, but not full to old, old age, I would say.

Klaus-Dieter: Okay. Thank you for those questions. Thank you for the answers. I just have a short announcement. Our next inaugural lecture event will be another double bill on Tuesday, 23rd June at 4pm with two lectures from professors in the Faculty of Science, Technology, Engineering and Mathematics, otherwise known as STEM. Professor Victoria Nicholas and Professor Francesco Crea, around the theme of inaugural insights: Student success and the future of cancer treatment, and you can register for those events via our research website.

All I have to say, first of all thank you very much for coming today. Thank you to the families for joining us here, that makes it very special. If I could invite you, and please remember we will go down and have some drinks and celebrate the event. But can I invite you for one last time to give a huge humongous applause for those wonderful speakers.