Social Media and Digital Legacy

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

Advertisements

ESRC Festival of Social Sciences 2018 #LiveFull2018

We are thrilled to announce that Living Life to the Fullest has been successful in a small funding award to participate in the Economic and Social Science Research Council’s (ESRC) Festival of Social Sciences 2018! The event, entitled The Co-Researcher Collective: What does it mean to live life to the fullest? #LiveFull2018, will showcase the work of the The Co-Researcher Collective – a group of vibrant young disabled people co-leading Living Life to the Fullest.

ESRC logo

Our aim is that the event makes space to inform and engage with audiences about co-production – working together in partnership to meet the aims of the project. Living Life to the Fullest co-researchers will present, talking about their motivations for and experiences of engaging with research, as well as screen their film Living Life to the Fullest: The Co-Researcher Collective (2018), which is currently in production. Discussion and a Q&A will follow! In addition, we will display some of our project data so far – young people’s artwork – for audiences to view. Most importantly, the event will provide a space to discuss and learn about co-production research with and from co-researchers themselves, as well as contemplate Living Life to the Fullest’s core themes of youth and future, disability and access, and arts and activism – pertinent social and cultural debates of our current times.

So, we want to capture the interest of multiple audiences; therefore, we invite you: members of the public, bloggers, students, researchers, academics, disability activists, young people, self-advocates, and local community health, disability, and youth organisations to come and join us! The event is free and will be held in an accessible venue.

The Co-Researcher Collective: What does it mean to live life to the fullest? #LiveFull2018 will take place on Tuesday 6th November 2018, 2.00 – 4.00pm (Sheffield venue: TBC). More details will follow: if you have any questions, don’t hesitate to contact Kirsty on k.liddiard@sheffield.ac.uk 

Living Life to the Fullest extends thanks to the Public Engagement & Impact Team, Faculty of Social Sciences at the University of Sheffield.

 

Living Life to the Fullest – A Project Update!

Living Life to the Fullest (ESRC), the ESRC-funded arts-informed co-produced research project co-lead by The Co-Researcher Collective and Dan Goodley, Katherine Runswick-Cole and Kirsty Liddiard at the University of Sheffield, continues to go from strength to strength.

The project’s Co-Researcher Collective – a group of young disabled people with life-limiting and life-threatening impairments (LL/LTIs) who are co-leading inquiry – is currently undertaking a range of activities across the project. This includes:

Excitingly, Living Life to the Fullest will be showcasing its unique approach to co-production in a panel at the upcoming 9th Biennial International Lancaster Disability Conference. Together, project academics and co-researchers Sally Whitney and Emma Vogelmann will share their methodological and theoretical journey so far, as well as premiere a short film currently in production by The Collective, The Living Life to the Fullest Project: The Co-Researcher Collective (2018).

Finally, the Co-Researcher Collective is currently in talks with BBC Digital and Channel 4 with the aim of producing content that raises awareness of the barriers faced by young disabled people with LL/LTIs and their families – so watch this space!

  • To follow Living Life to the Fullest’s lively blog click the box to the right!
  • If you have any questions or would like further information, please email Kirsty on k.liddiard@sheffield.ac.uk

 

Dealing with realities of inadequate, inaccessible toilets…

In this blog post, disability blogger and Living Life to the Fullest co-researcher Carrie Aimes shares her personal experience of having a suprapubic catheter. Carrie speaks about the inadequacy of public toilets, and her lived and embodied experiences of having a catheter. Fittingly, this post comes at the same time as the publication of a new report that has emerged from an Arts and Humanities Research Council (AHRC) funded project, Around the Toilet (AtT).

The report – A research project report about what makes a safe and accessible toilet space (Slater and Jones, 2018) – details the experiences of a wide range of people including those with health conditions, disabled people, parents, and queer and trans people, who are often left restricted, unsupported and discriminated against by inadequate toilets. An extended version of Carrie’s post (below) is available on her website Life On the Slow Lane, see here.

Carrie's website image

Have you ever looked at a disabled person and wondered how they go to the loo?

I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?

Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!

Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.

In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).

I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.

Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document here, which you are welcome to download and print as required.

*Disclaimer* This is my experience only, and in no way represents that of any other person(s). 

 

Disability Arts and Rightful Lives

Here at Living Life to the Fullest, we are thrilled to say that the artwork of two young disabled artists who participated in our first Arts Retreat in 2017 – facilitated by our brilliant community research partners, Purple Patch Arts – will be having their work included in a new exhibition, Rightful Lives.

Fraser Carr and Brandon Styles have agreed to be part of Rightful Lives – an online exhibition highlighting the lack of access to human rights experienced by many disabled people (particularly those with autism and/or learning disability), as well as the grave violence experienced by many disabled people and their families through the systemic problems and failures in health and social care. For example, see the Mazars Report (2015) and the recent Learning Disabilities Mortality Review (LeDer) (2015-2018). See here to learn more about Rightful Lives.

Rightful Lives begins on Monday 24th September 2018 and will run for a week.

You can follow the progress of the exhibition on Twitter at @RightfulLives or the hashtag #RightfulLives or on Facebook at #RightfulLives. If you would like to submit content for the exhibition Rightful Lives, see here, and please email exhibition@rightfullives.net

Visible, Liveable Lives: An Exhibition

All of the artwork produced in our Arts Retreats will be included in our own exhibition, Visible, Liveable Lives: An Exhibition (working title) later in the project. So watch this space!

To watch a BBC Breakfast report on our first Arts Retreat, please see here.

Screenshot of BBC News site with Living Life to the Fullest feature

 

 

 

Thanking the NHS… #SaveOurNHS

Living Life to the Fullest community research partner, DMD Pathfinders, has recently been on ITV News saying a big thank you to the NHS for the treatment and care its members have received throughout their lives. Significantly, the gesture was to mark the 70th anniversary of the NHS – first launched by Labour Minister for Health, Aneurin Bevan, on 5 July 1948. You can watch the ITV News report here.

dmd-pathfinders-logo

DMD Pathfinders is a user-led charity (reg. no. 1155884) that promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with Duchenne Muscular Dystrophy on issues such as independent living, housing, employment and welfare rights.

The NHS is under threat. Critically, the keys principles of the NHS are i) that it meet the needs of everyone; ii) that it be free at the point of delivery; and iii) that it be based on clinical need, not the ability to pay. Without doubt, the NHS is life-saving for many. In our project Living Life to the Fullest, young people with impairments categorised as ‘life-limiting’ and ‘life-threatening’ are telling us that access to good quality medical treatment, technologies and interventions are vital to, erm, living life to the fullest. Notably, the funding of and advancements to medical technologies has seen life expectancies for some forms of Muscular Dystrophy significantly increase over the last 20 years.

Currently, the NHS is critically underfunded by Theresa May’s Conservative Government; parts of it are also being readily privatised.  Of course, this is not a new state-of-affairs: a (now) decade-long austerity ideology has imposed relentless budget cuts to the health service, which are now routinely putting people’s lives at risk and making NHS staff suffer greatly. As Patients4NHS (2018) argue, ‘we are now experiencing the biggest sustained fall in NHS spending in any period since 1951’. Inevitably, this is exacerbated by the many other material conditions of austerity: increasing poverty and vulnerability; an increasing need for services; the knock-on effects for the NHS of £4.6 billion cuts to local authority social care budgets (since 2011); and over £3 billion of funds clawed back by the Treasury (between 2010-2013 alone): a very Tory story – you can read more of Patients4NHS’s analysis here.

#SaveOurNHS

 

Rethinking Employment for Disabled Young People

Living Life to the Fullest co-researcher Emma Vogelmann, an Employability Officer at the national charity Muscular Dystrophy UK, spent last weekend hosting its Employability Weekend. She explains below:

One of the best parts of my job as Employability Officer at Muscular Dystrophy UK is getting to work directly with young disabled people to help them get into work. This is exactly what I did on the Weekend of May 19 and 20 – while some people were watching the Royal Wedding I ran sessions with some really talented young disabled people to boost their skills and confidence. The Employability Weekend was a chance to give advice on everything from how to put together a CV to how to ace an interview. We had speakers from PUSH careers, Amnesty International and HSBC.

Young disabled people sat in circle

Image courtesy of Emma Vogelmann

All of those who attended really benefitted from the tailored advice they received. We wanted to put together a weekend that focused on employment barriers to disabled people. Other careers events will tell you how to write a good CV but they may not be able to advise of you should put your disability on it. This is what the Employability Project is about – helping address the specific issues of young disabled people and find solutions so talent does not go to waste.

Young disabled in mock interview

By Emma Vogelmann, Living Life to the Fullest