Thank you NHS!

All of us here at Living Life to the Fullest want to say a big happy birthday to the NHS, which is 70 years old today (Thursday 5th July 2018).

The NHS has meant a lot to many of us and we have made a short film featuring our NHS stories. You can watch the film here. Please share its link on social media if you like it: https://youtu.be/UC9JqH_bVZ4

Thank you NHS! #SaveOurNHS

Access: This film does not yet feature audio description. You can read a transcript of the film, which can be read by a screen-reader, here: Thank you NHS Transcript

Living Life to the Fullest wants to say thank you to the NHS (film shot)

Sally's NHS Story (film shot)

 

Advising the government…

This week, we have been lucky enough to reblog a post published by the MDUK Trailblazers on its website here. Living Life to the Fullest co-researcher and MDUK Trailblazer Employability Officer Emma Vogelmann is working with a government advisory committee to think about how to meet the needs of wheelchair users when travelling by bus:

Emma Vogelmann in her wheelchair waiting for a bus

On Friday 15 June, Emma Vogelmann, our Trailblazers Employability Officer, met with the Disabled Persons Transport Advisory Committee (DPTAC) and other disability organisations to discuss the issue.  The DPTAC advises government on transport legislation, regulations and guidance.

The meeting follows a Supreme Court ruling earlier this year in Doug Paulley’s case against a bus company after he was not allowed to board a service due to a mother with a pushchair refusing to move. The court said more needed to be done to persuade non-wheelchair users to vacate designated wheelchair spaces when necessary.

At the meeting, which was held at the Department for Transport, attendees discussed potential solutions to problems such as the design of buses. Ideas included creating an awareness campaign so bus drivers knew their obligations, clearer signs to make it clear that able-bodied passengers (sic) should vacate the space for disabled passengers and designing future buses to make spaces easier to access with a wheelchair.

Emma shared the experiences of fellow Trailblazers – a network of young, disabled campaigners – as part of the group discussions. Improving public transport is a key priority for the Trailblazers network. In 2016, we launched our updated campaign report, End of the Line, which identified the barriers disabled people face on public transport. Buses were reported as being particularly poor with our survey finding:

  • 67 per cent of respondents having experienced problems getting on a bus, owing to the attitude of behaviour of the driver or fellow passengers
  • more than half of respondents were unable to travel on a bus because the wheelchair space was taken up pushchairs
  • 31 per cent of respondents had been unable to get on a bus because the driver refused to deploy the ramp

Emma said events like this are essential for working towards an inclusive future:

The meeting brought up so many great solutions to common problems faced by disabled people when they use the bus. It was great to have different disabilities represented to ensure all needs are being considered.

Trailblazers Manager, Lauren West, said:

Public transport is so essential for young disabled people. Buses are often a vital service allowing disabled people to get to work or school, or just getting out and about. However, from our End of the Line report we know that there are significant barriers with bus travel. Events like this that bring together experts and those with lived experience are essential for allowing the future of transport to be as inclusive as possible.

Find out more about our Trailblazers network

We give our thanks to MDUK Trailblazers, Emma Vogelmann and Trailblazers Manager and post author Lauren West for allowing us to reblog this post.

MDUK Trailblazers logo

 

Accessing the Arts to tell Stories

On Thursday 28th June 2018, Living Life to the Fullest researchers Kirsty Liddiard and Carrie Aimes travelled to the Attenborough Arts Centre in Leicester to discuss the project’s on-going arts-strategy, which positions the arts and art-making as the means through which children and young people with life-limiting and life-threatening impairments can tell new stories of disability.

We wanted to make this connection after Michael Attenborough CBE, son of Lord Richard Attenborough and esteemed English theatre director, got in touch to say he was inspired by Living Life to the Fullest and, as a patron of the Attenborough Arts Centre, recommended we make contact to speak about possibilities of collaborative work for the future.

Artwork on the picnic tables

Artwork on the picnic tables outside the Centre

The Attenborough Arts Centre is a leading space for inter/national disability arts, attracting credible and critically-acclaimed disabled artists and cultural producers. For example, its next exhibition is In My Shoes. Art and the Self since the 1990s, an Arts Council Collection Touring Exhibition currently on display at the Yorkshire Sculpture Park: ‘In My Shoes considers the influence of so-called ‘young British art’. The exhibition includes early works by artists including Tracey Emin, Sarah Lucas and Gavin Turk, who gained international recognition during the 1990s for direct and often self-referential work. The exhibition also represents the work of a younger generation of artists who have maintained an active presence in their work’ (Arts Council Collection Gallery Guide, 2018).

Signage: Pop in to discover inspiring artWe were given a tour of the Centre’s incredible facilities, which includes new gallery and outdoor spaces, as well as a Changing Places toilet. The Centre prides itself on being accessible and inclusive, and is a crucial resource for local disability and youth groups, organisations and schools:

‘With over 18 years of experience, our programme offers performance, courses and workshops, contemporary art exhibitions, activities for children and families, and more. We are proud to champion emerging talent and disability-led artists, supporting those starting their careers. Our outstanding access and inclusive work has been recognised, through multiple awards and grants from Arts Council England, BBC Children in Need, Leicester Shire Promotions and Paul Hamlyn Foundation. Our audience has grown to 86,000 people over the last year’.

 Attenborough Arts Centre, 2018

It was a real honour to go and speak about Living Life to the Fullest and its artistic aims. We are very excited about the prospect of working with folk at the Centre, who were as enthusiastic and dynamic as they were committed to disability justice and liberation through access to the arts – a politic that runs deep in Living Life to the Fullest. So, watch this space for our exciting collaborative work coming up!

We want to end this blog post with a quote offered to us by Michael Attenborough CBE when in conversation. For us, it fully embodies the ethics and politics of Living Life to the Fullest and its positioning of the arts as emancipatory for disabled people:

‘The right of every individual to self expression is a basic human right. Consequently access to the Arts is indispensable. In a civilised society that must obviously extend to disabled people. Through the Arts we explore what it means to be human, how we relate to other people and to the world around us. They are deeply personal acts of emotional and intellectual communication. They look after the invisible parts of ourselves, our emotional, psychological and spiritual health. But this doesn’t come free. We need places where all of us, disabled and able bodied, can practise, refine and, above all, share our achievements. A caring and humane community has the arts at its centre, fully committed to providing and supporting access to them for everyone.’

 – Michael Attenborough CBE, 2018

By Carrie Aimes, Living Life to the Fullest Co-Researcher, and Kirsty Liddiard

Together for Short Lives: My Care Transfer

Together for Short Lives logoLiving Life to the Fullest impact partner and friend Together for Short Lives, the UK’s leading charity for seriously ill children and their families, has just launched a new online platform: My Care Transfer. It’ll help families looking after seriously ill children to keep all their important information in one secure place, so they can share it with professionals as and when they need to.

Together for Short Lives said, “We often hear from families that admission to hospital can be made more stressful when key information isn’t easily accessible, so we were keen to create a resource that families can use to ensure effective communication with care professionals.

The platform is fully optimised to use on mobile phones and tablets, and families can register and fill in a form. Once complete, My Care Transfer generates a document that families can save, update, print and send whenever they need to share their information with professionals.

The document can hold information on emergency care plans, personal care preferences, daily routines, allergies, and symptom management, so families always have important information at their fingertips. The personal information saved on an individual’s plan will only be seen by those with login details and those you chose to share your plan with.

My Care Transfer is the last in a series of three supported by the Bupa UK Foundation, focusing on supporting seriously ill young people moving to adult services. Whilst My Care Transfer can be used by families with a seriously ill child of any age, it will be particularly useful for those making the transition to adult services, ensuring no key information is left behind or forgotten.”

You can read more about My Care Transfer here, as well as read some experiences of parents who have used it. You can follow Together for Short Lives on Twitter here: @Tog4ShortLives

 

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

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, St Mary’s Church, Sheffield. 

Tickets: Get your FREE tickets here!

Audience: All welcome!

Access: Wheelchair accessible venue; accessible toilets; quiet room available; BSL Interpretation; parking available (please get in touch with k.liddiard@sheffield.ac.uk for parking enquiries).

For any access questions or queries, please contact Kirsty on k.liddiard@sheffield.ac.uk in the first instance.

Twitter: Please see/use our hashtag #LiveFull2018

Web: livinglifetothefullest.org

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