Confirmed Speakers & Seminars
All of the speakers below will be presenting at the Digital Legacy Conference 2015. Jack Rooke will be the master of ceremonies (MC), Evan Carroll will deliver the opening keynote and the closing keynote and “thank yous” will be delivered by James Norris and Jack Rooke.
*Special Announcement – Dr Mayur Lakhani
We are delighted to announce that Dr Mayur Lakhani will be taking time out of a family wedding to speak at the Digital Legacy Conference. Mayur is working GP and chair of the National Council for Palliative Care (NCPC) / Dying Matters. Mayer is currently standing for Royal College of General Practitioners (RCGP) president. Mayer’s election manifesto can be viewed here.
Mayur will talk about the importance of talking, planning and living in relation to end of life planning. He will also provide information about Dying Matters Awareness and the recent research commissioned b by Dying Matters in relation to end of life planning and attitudes towards death. #VoteMayurforPresident
Digital Death, we need to switch on before we switch off
In today’s connected world our digital assets are arguably becoming as valuable as our physical possessions. Our digital estates now encompass social networking sites, online photos, blogs, websites and much more. Furthermore, the size of our digital estates and the importance we place on them is increasing year on year. Processes within the tech, funeral and end of life sector are now being adopted to help address this. This seminar will give an overview of where we are today and the direction in which we are heading.
⇝ James Norris
James Norris is the founder of DeadSocial and the Digital Legacy Conference. DeadSocial provides independent end of life tools, frameworks and resources to help people prepare for death on their digital devices (computers, phones etc). The James’ goal is to help raise awareness and provide support around digital end of life planning. James has been featured in a range of publications and TV shows ranging from BBC Click and the Wall Street Journal to Vice Magazine and the Russia Today. James is a part time lecturer at University College London (UCL) and has directly advised Labour party members (Ed Miliband, Ed Balls and Ken Livingstone) on the state on the digital, startup eco-system.
Digital Afterlife: A Retrospective
Social media use at the coalface of palliative patient care
Patients who are diagnosed with life-limiting illnesses naturally have many questions and feel trepidation and fear. Social media and the online domain can be the first place they address these questions to, either actively or as observers. Here, #death, #dying, #loss, #cancer and #palliative care are important and much discussed topics and the questions that may not have been brought up in the doctor surgery or outpatient clinic may surface.
Dr Taubert will discuss some of his findings from the clinical setting and present interesting research into these ‘palliative social media’. You may find some of the content disturbing/heartwarming/odd/challenging in equal measure.
⇝ Dr Mark Taubert
Dr Mark Taubert is a hospital consultant specializing in palliative medicine. In this role, he sees and treats people who have life-limiting conditions like cancer, lung diseases and neurodegenerative conditions, to name just some examples. He and his teams in Cardiff provide symptom control and emotional support services to those who need it most in the last years of their lives. This inevitably means that he talks about death and dying a lot, and has found that people have the most fascinating views and stories on this topic. Perhaps contrary to what might be expected, patients and their relatives hardly ever find these discussions depressing or dreary, but rather find it reassuring to be able to ask sometimes very open questions about this important part of life. Mark is Clinical Director for palliative care services at Velindre NHS Trust in Cardiff and is also a non-executive director for Deadsocial.
A professional interest in social media and how they impact on palliative care services developed in 2011, when a very unwell, elderly lady in an inpatient hospital unit produced a smartphone after he had seen her and announced that she was going to give him a glowing review on her Twitter page. Mark has since desperately tried to find said review but failed. He has written several papers on the topic of ‘palliative social media’ in an attempt to make up for this lost opportunity.
Digital Estate Planning & UK Law
Only a decade ago, the concept of making provision for a digital estate on death would have seemed absurd. Making provision for digital assets is now essential, because so much of our life, both professional and personal, has found its way into the digital sphere. An important question for all solicitors dealing with planning for death through will making and dealing with estates after death is to consider and discuss with their clients, what will happen to their digital estate on death. The seminar covers legal aspects of a digital demise, what the law says on who actually owns and who has access to those assets in the event of death and considers how they are controlled after death.
⇝ Ian Bond
Ian the deputy chair of the Law Society’s Wills and Equity Committee which promotes improvements in the law and procedure relating to wills, probate, trusts and charities and to development initiatives in those areas. Ian is also a member of the Technical Advisory Committee of the Law Society’s Wills & Inheritance Quality Scheme (WIQS) which provides a quality standard for wills, probate and estate administration practices in England & Wales. Ian has contributed a number of chapters to the forthcoming Law Society Publication “the Probate Practitioners Handbook” 7th Edition as well as writing and lecturing on key issues relating to wills and probate for the legal profession. Ian is a partner in Higgs & Sons a leading Black Country law firm.
GOOD GRIEF! How the web helped me make a show about my dad’s death.
Jack Rooke is a performer, campaigner and the on-air expert in bereavement for Radio 1. In this seminar he’ll be exploring how the internet has helped him to build a comedy-theatre show called Good Grief, and why the web has changed the game in how people express personal and creative stories of grief.
⇝ Jack Rooke
Jack Rooke is a comedian, performer and campaigner from Watford. He hosts the award-winning stand-up poetry night Bang Said The Gun and The Guardian Literary Institute at Camp Bestival. After being featured on BBC Radio 1’s ‘Guide To Happiness’ documentary, he is now Radio 1’s resident on-air expert in bereavement, and is a resident artist of The Roundhouse and Soho Theatre’s Comedy Lab. He has written for The Independent, Cosmopolitan and Channel 4, and is the Deputy Editor of culture/lifestyle magazine The CALMzine, which raises awareness of male suicide prevention charity CALM. www.thegoodgriefproject.com
Everywhere I go, you’re going with me: sharing significant moments of life and death in Web 2.0 mourning
Digital environments for mourning offer new domains for portraying the deceased’s past life, for publicly staging grief and for interacting with the dead. According to recent research on digital mourning practices, Web 2.0 environments expand mourning and grieving socially, temporally and spatially (Brubaker et al. 2013) and often prove useful in helping the bereaved cope with their loss (Williams and Merten, 2009). This presentation will discuss key findings from the discourse analysis of death-related sharing practices in social media (Androutsopoulos, 2014). The analysis will provide a close-up to the what, how, and why of networked users’ sharing of significant moments of life and death following the loss of a loved one and discuss highpoints in sharers’ affective trajectories in the context of Web 2.0 mourning.
⇝ Dr Korina Giaxoglou
Dr Korina Giaxoglou is Senior Lecturer in English Language & Communication at Kingston University London where she leads the MA by Research Programme in Linguistics as well as undergraduate modules on sociolinguistics, language & emotion, discourse & social media, and workplace communication. Her research interests lie at the interface of sociolinguistics and linguistic anthropology with a special focus on narrative and affect in traditional and contemporary practices of mourning. Her PhD thesis (King’s College London, 2008) proposed a framework for the analysis of Maniat-Greek laments as ethnopoetic narratives. Her current research focuses on sharing practices of death and mourning on social media. She is a member of the British Association for Applied Linguistics (Special Interest Groups: Language & New Media, Health and science communication: applied linguistics perspectives), the American Anthropological Association, the Modern Greek Studies Association and the International Death Online Research Network.
Virtual Wakes in Brazil
Andreia’s research focuses on the interactions between users of a Brazilian social network group that often watch virtual wakes of strangers. The virtual wake is a real-time, online transmission of the wake, which comprises, in the Brazilian culture, the period of 12 to 24 hours spent with the body before burial or cremation. The Virtual Wake is offered since 2001 as an alternative to friends and family who cannot be physically present at the wake, as a possibility to overcome distance. However, some funerary companies keep the access to their cameras also open to the public who never knew the deceased. The online group, called “Dead people profiles” (Profiles de Gente Morta, or PGM in Portuguese) was created in 2004 in a social network called Orkut, as a space dedicated to listing the profiles and causes of death of that very social network’s users.
In 2007, it also became a space for viewing the virtual wakes through the open-access cameras, where the members also discuss their personal experiences with death and dying. The members’ points of view on the virtual wakes and general interactions related to discussing death online started to be analysed during a participant observation period and private online interviews in 2013, as part of a netnographic work for Andreia’s Master’s degree in Anthropology. She is now a member of the Centre for Death and Society (CDAS) at the University of Bath, where she has initiated a further study on the Virtual Wakes as part of her PhD thesis in Sociology.
⇝ Andréia Martins
Andréia Martins has a Bachelor Degree in Social Communication with emphasis on Journalism (2009), and a Masters in Anthropology (2013) from the Federal University of Paraíba, Brazil. She has been awarded a Graduate School Scholarship to be able to do her PhD at the University of Bath, started in September 2014. Her research is about the Virtual Wakes, a subject she has presented on conferences throughout Europe and Latin America during her Masters. Andréia has also worked as a reporter for a news website (2013-14) and as a communication advisor for a Human Rights NGO (2009-14), both in the city of João Pessoa, Brazil.
MND Diagnoses & Creating a Legacy
Motor Neurone Disease (MND) is a progressive terminal neurological disease, meaning provision of palliative care is crucial. Dignity Therapy, a recognised palliative care intervention, encourages people to reflect and document their past experiences and memories. RecordMeNow is a video-based DVD-legacy creation generation app where users record messages using a webcam and microphone. Upon completion the recordings are exported to disc for future use by their children.
This project will investigate the experiences of people with MND using RecordMeNow. It will also investigate the experiences of using a pre-recorded legacy by young people who currently care, and young people who are bereaved.
Olly Clabburn is a Graduate Teaching Assistant/PhD Student in the Faculty of Health and Social Care at Edge Hill University. Since graduating in 2012 from Lancaster University with a BSc (Hons) Psychology in Education, he has worked closely with various young carers’ support groups and assisted in establishing New Zealand’s first young carers’ network. He also has a background in researching the implications of young people caring for a parent with MND and their subsequent bereavement.
Continuing bonds (virtual seminar – via video)
Jayne Galinsky’s PhD is a grounded theory study, which aims to understand the impact of dream fulfilment as an intervention on the psychosocial well being of seriously ill children and their families. Jayne will present findings from this study, with a focus on the role of dream fulfilment on family grieving processes. Her findings will be situated in a discussion of the existing literature on grief and bereavement. Jayne will also discuss some of the ethical aspects of doing research with seriously ill and bereaved children, young people and families.
⇝ Jayne Galinsky
Jayne Galinsky is a doctoral researcher at the Cancer Care Research Centre, within the School of Health Sciences at the University of Stirling. She has a background in Psychology, with a focus on children and young people. Prior to her PhD, Jayne was involved in research at the Institute of Child Health and worked at Richard House Children’s Hospice. She is interested in qualitative methodologies and finding out more about children’s experiences of living with life threatening conditions.