This special blog post has been written by the wonderful Lucy Watts MBE, who is our original Living Life to the Fullest co-researcher. In this post, Lucy contemplates the meaning of access to social media and digital legacy for young disabled people with life-limiting and life-threatening impairments (LL/LTIs):

This week I attended a conference at St Giles Hospice, Lichfield entitled “Social Media in Palliative Care: Life and Death Online” which was extremely interesting, some really fascinating presentations and I was very fortunate to co-present with James Norris, founder of the Digital Legacy Association of which I am the Patient and Young People’s Lead, with James laying out digital assets and digital legacy, after which I presented my own digital legacy plans and also touched on living with a life-limiting condition, receiving palliative care, advance care planning, my work and outliving my prognosis. Other presentations included Playlist for Life, who showed incredible videos of dementia patients struggling or completely shutdown, and when music is played, their ability drastically improves, including a man who could barely shuffle with a zimmer frame and support from a carer, to songs from his life being played and suddenly not just walking easily with his frame, but walking without it, and even having a little dance, and a man who had been shut down for years, no interaction with the world, when music from his life is played, suddenly verbalising as he sang along to the songs. Other presentations included using virtual reality to aid mindfulness in palliative pain relief and whether this can reduce dependency on opioid painkillers, Dr Ros Taylor MBE talking about social media platforms as a communication tool between medical professionals and also between professionals and patients, Dr Mark Taubert speaking about Advance Care Planning on Twitter, and a father sharing his story of social media in updating family through his daughter’s illness and death, and sharing their lives through social media platforms, amongst other presentations. It was fascinating, with such a fantastic range of presentations and a broad range of attendees, and quite a unique atmosphere compared to your average conference. The event has so much scope for future collaboration and building on the momentum created by the event.

Social media has become an essential aid to people with disabilities and life-limiting conditions, from allowing us to interact with the outside world irrespective of our limitations, to talking with friends and family, to connecting us with patient/condition/disability communities regionally and nationally as well as internationally, to keeping us up to date with the world, and even enabling us to contribute to campaigning and awareness and linking us with voluntary opportunities. This includes enabling us to contribute to research, such as we are doing here at Living Life To The Fullest with this co-researcher collective, where we’re using social media and technology to enable us co-researchers to conduct interviews and collect data remotely, using technology such as Skype, Facebook Messenger and WhatsApp. Social media can be so much more than just about socialising. It’s an incredible enabling platform for so many different needs and uses. For me, Facebook connects me with people around the world, allows me to talk to family and friends, to share my life and share updates, to share photos and other media, to conduct my voluntary work through gathering information, sharing links, sharing blogs, raising awareness of issues, publicising events and bodies of work, recruiting people for research and projects of my own but also on behalf of others and so much more.

One thing that is getting missed with social media currently is the lack of planning for what will happen to your accounts upon your death. Planning for your social media and other digital assets is vital. This is known as your digital legacy. Planning for your social media platforms can be supported through the Digital Legacy Association’s Social Media Will can allow you to fill out all your account details for family members/nominated people to receive after your death, and Facebook allows you to appoint a legacy contact who can take control of your Facebook account after you have died, albeit with some restriction on what they can do, and your Facebook can be deleted or be memorialised. However, it’s not just social media accounts you need to plan for, as I mentioned, digital assets are also key. Digital assets includes online banking, iTunes, apps, monetary platforms, gaming platforms, shopping accounts and so on, as well as things like your photos and videos held on technology such as laptops, tablets, phones and those held on online services such as cloud platforms and digital storage websites. You also need to make plans for this. Check out the Digital Legacy Association here for more.

I’ve done my Advance Care Planning to plan for the end of my life including my preferred priorities of care (PPC) and preferred place of death (PPD), I’m finalising my plans for my funeral and celebration of my life and have shared my wishes with my family, but I’ve also planned my digital legacy. I’m planning a series of blogs for my mother to post after my death on my blog, Lucy’s Light, and also some social media posts too. I’m creating a legacy film, a form of documentary of me for my family to hear me and see me and listen to me talking about myself, my life, any advice and so on, but this will also be uploaded to YouTube and posted on my blog so that if people stumble on my work after my death, they can get to know me through this film. For this, I am creating video tutorials to enable my mother to carry out my wishes to post the blogs and upload the video. I am also looking into my funeral being live-streamed to Facebook so my friends unable to attend physically can participate. This is allowing me some control over how I am remembered after my death and brings me some comfort.

We live so much of our lives online, and as such we should be planning our digital legacies as well doing our will, advance care planning and sharing our wishes.

By Lucy Watts MBE