Sue in conversation with Jools Barsky, co-founder of the Death Cafe movement about how Death Cafes help us to live consciously for a better world.
Jools is 32 and the sister of Jon Underwood whose inspiration and vision created the global Death Cafe movement. Jon died suddenly in 2017 of an undiagnosed cancer. Jools works in the health care industry and volunteers her time free to Death Cafe alongside her and Jon’s Mum, Susan Barsky Reid, to ensure Jon’s legacy continues to benefit us all.
Sue: Jools, how did the Death Cafe movement come about?
Jools: We were on a bus when Jon told me he wanted to give up his job with Tower Hamlets Council to focus on projects around death and dying. I thought, ‘Yes, do it!’ Obviously, neither of us had any idea of the impact that his vision would have. Shortly after this, my Dad gave him a newspaper article about cafe mortels, started in 2004 by Swizz sociologist Bernard Crettaz, which encouraged people to come together to talk about death and dying. Jon thought this was the perfect starting point. So, together with our mum Susan Barsky Reid, who is a psychotherapist, he set up the first UK Death Cafe on 25th September 2011 at his home in Hackney.
I have a degree in marketing, so in the early days I advised Jon on an initial business and marketing strategy for his vision for the Death Cafe movement. I also designed the first Death Cafe logo and then Jon and I worked together with a designer on the later logo. However, at the time, I was very much in the background offering marketing and PR support when needed.
Sue: How did you step into the role you now have?
Jools: In 2015 Jon and I were working together on his vision of setting up the ‘Real Death Cafe’ [a permanent Death Cafe venue in London]. Understandably it made him think about what might happen to his vision should he die. So, he asked me to take over Death Cafe in the event that he were to die before a proper organisational structure was in place. Of course, I agreed, but I read his email thinking, ‘Well, this is never going to happen. Jon will be in his 80s by the time he dies. We’ll have plenty of time to work on this together.’
He proceeded to send me an A4 page of operating instructions for the entire global Death Cafe movement. It made me laugh because an A4 page is really not sufficient for the enormity of his vision. When I was sitting in the hospital after his emergency admittance, I found his email again. In a strange way, it soothed me and made me determined to make sure his legacy of the Death Cafe movement would continue as he wanted.
Sue: I have heard quite a few stories of people putting their affairs in order or asking family members to take care of things if anything should happen to them. Then out of the blue they suddenly die. It sounds as if this happened for Jon, too.
Jools: Yes, it was a very strange because none of us had any idea there was anything wrong with him. One day he just collapsed, so it was a huge shock for us all.
But I also found it odd that even though he was so involved in helping people to talk about death and dying, he hadn’t put a plan together for his own funeral. I think he intended to – but like many people – he just never got around to it. He also had a partially completed Advance Directive. It’s a lesson for us all because Jon was only 44 when he died, leaving behind his wife and two young children.
Jools: It’s important to take into account how the person feels about death and dying. Some people are really reticent to discuss it for their own reasons, and I don’t believe it’s right to force death and dying down anyone’s throat. But, in my own experience with Jon’s sudden death, I believe it’s really important for us all to write down our end of life wishes to help those left behind. Otherwise they are left with the trauma of guessing what you may have wanted. This can create considerable friction within families.
Sue: Why do you think we find it so hard to face the fact we are going to die?
Jools: I think it’s the terror of the unknown. The thought of the cold foreverness of death can be terrifying. I completely understand why people don’t want to think about it. It’s certainly an unknown entity for me. I don’t know how my death is going to happen or what it will be like. But I know I need to face it in order to make the most of my life while I still have the opportunity to do so. If more of us accepted that we aren’t going to be around forever, the more we would develop compassion for each other, and realise how fragile we are emotionally and physically from the moment we are born.
Sue: I agree with you about this. When we accept our mortality, it changes things. We begin to realise that we all in this life together.
Jools: Yes. It’s also about understanding that underneath everything, we all have similar underlying emotions. People aren’t objects. For example, when we behave badly towards someone else, we need to remember that this person may be alive right now but one day – just like us – they are not going to be here anymore. I believe this gives us the humanity that can sometimes be lacking. It’s about compassion and empathy. That’s what changes us.
This is why I am so proud of Jon’s contribution in this area. I believe the Death Cafe movement will continue to spread its message that it’s okay to talk about death and dying. I feel passionate about this. Yet, many people are still shocked to hear about someone’s death, even if they have reached the age of 95. I am very grateful that my conversations with Jon and my involvement in Death Cafe have helped me to speak to my Nan about the topic. She is 92 and really engaged with talking about her own death and what her legacy might be. She also loves talking about her childhood experiences, and how our perception of death has changed over the decades.
Sue: What does she say about this?
Jools: She believes people were much more accepting due to the Second World War. Very young people were dying and being killed on a daily basis, so death was right there in everyone’s face. I get the feeling today that many people want to live in this lovely rose-coloured bubble where they imagine they are going to live forever. They find it really hard to accept that their life is finite, or simply that they will age.
Sue: I agree with you about ageing. Our Western society seems to be addicted to youth, and ageing and death are regarded as something that needs to be conquered. This really doesn’t help people to face up to their mortality.
Jools: No, it doesn’t. I am so grateful that I had Jon to talk to as a young person. He was 15 years older than me, and a Buddhist. So, he helped me to understand how Buddhism healthily engages with death and dying. When I was about five years old, I remember imagining that after you died, you floated around the universe in a dark hole. I found that terrifying. But when I told Jon about it, he offered me a Buddhist perspective of what death might be like. This calmed me and changed my whole view of death.
Sue: How has this Buddhist perspective influenced your relationship with death?
Jools: Death is utterly inevitable. So, I regard every second of the day as a gift and I am lucky to be alive. It can be difficult to engage with people who seem to give up or talk about getting old or are constantly deny themselves those little pleasures in life. I would rather be fat and happy and have that extra piece of cake than make myself miserable, and die the next moment. Of course, we have to take care of ourselves but let’s learn to enjoy what we have. For example, let’s enjoy the privilege of having bodies that work. Being involved with Death Cafe makes me much more mindful of things like this.
Sue: Do you feel life in some form continues after death?
Jools: Personally, I believe in reincarnation – but I am still very much a beginner in terms of understanding Buddhism. However, I like how Buddhism takes scientific discoveries into account, and I like the idea of consciousness being tangible to the extent that it could transfer into another living being. I don’t believe things just disappear.
Sue: What’s your vision for Death Cafe now?
Jools: Jon was working on this full time. I have another job as well, so my time with Death Cafe is limited in what I can do. Right now, I am focusing on looking at what isn’t working so well and finding ways to improve it. But my main goal is to translate the guidelines into a number of different languages. I want to make them much more accessible right across the world so more and more people can have these important conversations.
It’s been very comforting to see Jon’s plan for Death Cafe being fulfilled and I love connecting with people from different countries through the Death Cafe website. People often get in touch when they have technical issues or they are looking for advice on how they can encourage more people to come to Death Cafes, or they want to talk through a problem they encountered with a participant during a Death Cafe. When I connect with them, it reminds me of how Jon’s vision has helped to change so many people’s relationships with death and dying, and how this is continuing to influence whole communities. Jon was so influential to the growing death positivity movement both in the UK and the States.
Sue: Do you believe the Death Cafe movement has helped with end of life care in our National Health System?
Jools: Death Cafe has enabled many more people to consider that they aren’t going to be around forever, nor, indeed, are those they love. I believe this has influenced how the NHS is providing a much stronger emphasis on end of life care. However, I also believe there’s still a lot more work to be done in this area because medical school training continues to focus on how to treat dying patients clinically rather than how to support their spiritual and emotional needs at the end of life.
Sue: Yes, I agree that the NHS has still got a long way to go with this. I have heard horror stories of how people are told about a terminal illness or how the dying, and their families, experience a lack of end of life care. What’s your own vision of how this could improve?
Jools: I would like to think that one day we could create the Real Death Cafe that Jon wanted to set up. I know what a massive investment is needed to do this, and how difficult it was for Jon to raise the finance. So, I am reluctant to pin that down right now. But I know for sure that if every single person in the UK were to go to one Death Cafe in their lifetime, it would completely change the way we think about death – and about life.
Sue: I couldn’t agree with you more about this. Personally, I am heartened by the age range of participants coming to the Death Cafes I have run over the years. The youngest so far is 18, and the oldest 87. What I find fascinating is that there’s no discrepancy in how they talk about death. People of any age come to the Death Cafe because they want to be there. Young people may not have the life experience behind them, but they are just as keen to have the opportunity to talk about it.
Jools: Yes, it doesn’t matter how old you are. Death profoundly affects us all.
Sue: I understand your Mum works closely with you on Death Cafe. Has this close involvement helped you both to come to terms with Jon’s death?
Jools: My Mum and I were incredibly close to Jon – the three of us were so similar. Jon was intrinsic to our daily life. When something like this happens, life is never going to be same again; it’s that moment when you pick up the phone on the way back from work to have chat and you’re showered with a waterfall of grief when you realise you can’t do these normal things that were part of your normal routine.
People assume that because of the work we do, we might easily come to terms with death and dying – even, that it doesn’t matter. But everything we do is a reminder that life is finite. Yet, when I read Jon’s emails and see the things that have been written about him, and speak to people he has spoken to, it almost feels as if I am channelling him through his work that I am continuing to do. I feel incredibly privileged to do this.
For more information about local Death Cafes to you, please go to www.deathcafe.com