Being Lucy: Festival Fun @ WOMAD

Lucy in front of WOMAD sign

Photograph by Lucy Watts MBE

This week’s Living Life to the Fullest blog post comes from our wonderful Lead Co-Researcher, Lucy Watts MBE:

I’m a 24 year old disabled female with a life-limiting illness. Born with health problems and receiving various interventions whilst growing up, my condition progressed throughout my childhood until I became seriously ill and completely disabled at 14. At 17, after a long time spent avoiding the conversation, my consultant told us that my condition would shorten my lifespan; he didn’t know by how much, but I was certainly not going to live a long life, let alone make “old bones”. I started receiving palliative care alongside life-sustaining interventions and came under a young adult hospice-at-home service. Then a year later, I was told my prognosis was less than 5 years. To reach the age of 24, I’ve already exceeded my prognosis. In October I turn 25; and can say I have survived at least 2 years longer than expected. My life is extremely medicalised, I have 24 hour care of which 16 hours is with an intensive care nurse, I’m dependent on the nutritional equivalent of life support (TPN), being hooked up to intravenous drips at least 21 hours a day through a Hickman Line directly into my heart and requiring intravenous fluids and medications, as well as a tube that drains my stomach continuously and an Ileostomy and also a Urostomy (Ileal Conduit). I’m dependent on a wheelchair, require hoisting to transfer and can do very little for myself. My life can feel like one long medical procedure. My illness meant that as my peers became more independent and their lives were progressing and their world opening up, and they were discovering their identity, experimenting and planning for their adult life, I was becoming increasingly dependent at a rapid rate, my life was regressing and my world getting smaller and smaller, I had lost my identity, stuck in bed at home, unable to socialise much at all and missing out on the transition into young adulthood. Now, over a decade on since my body finally gave up, I’ve missed out on much of my young adulthood. I don’t get to be a young adult much at all. I live an incredible life, with my voluntary work going from strength to strength and so many amazing opportunities opening up and achievements made, but I don’t often get the chance to just be a young adult and do ‘young adult’ things.

Then, a while back, Philippa at St Christopher’s Hospice asked if I wanted to come to the WOMAD Festival (World of Music, Arts & Dance) with them, supported by the charity Festival Spirit who provide specialist camping accommodation geared up for people with complex health needs and disabilities. I jumped at the chance. I couldn’t wait for WOMAD to come around, and boy was it amazing; 100 times better than I ever could’ve imagined.

Lucy and friends

Photograph by Lucy Watts MBE

Festival Spirit have a large tent which is split into cubicles (for privacy) with electricity for equipment, a profiling bed, a camp bed for a carer to stay with you as well as having mobile hoists, hard flooring, a separate wheelchair charging tent, a large area full of camp beds for numerous care staff and volunteers to sleep in and even a large heater to try and keep the tent warm. Festival Spirit also purchased a fridge specially for me l store my TPN (intravenous feed). This is the only way I could have ever camped at a festival, without these facilities it would’ve been impossible. We drove to St Christopher’s Hospice in South London and then travelled up to the Charlton Park estate on a coach with everyone. We arrived to be greeted by the Festival Spirit Team and volunteers and wow, the facilities blew our minds. St Christopher’s take young adults to festivals with Festival Spirit every year but this was my first ever experience of a festival. It’d been on my bucket list but it was something that was an “I’ll never fulfil that” item. Until now! On Thursday morning we travelled up to WOMAD and we came home Sunday evening.

WOMAD accessible bedroom

Photograph by Lucy Watts MBE

WOMAD was amazing. The atmosphere was incredible, the music, arts, dance, activities and attractions were fantastic, we had such a great time. I didn’t want it to end. We saw/listened to some amazing acts, my favourites being Ezra Collective, Goldie and Amadou & Mariam. The latter, Amadou & Mariam, are two visually impaired musicians who are husband and wife and were amazing. Despite the fact they sang in French, and I couldn’t understand the lyrics, the music, the performance, the atmosphere, the beat and the impact was mind blowing. I also watched a talk by a hero of mine – who created Touretteshero – and that is Jess Thom, a comedian, performer, writer, producer and disability rights advocate who uses a wheelchair and has Tourette’s. Her talk was interesting and informative, thought-provoking and entertaining in equal measure. Jess really got the audience to think about how – and why – we think of disability as inherently negative when actually it is a part of the natural diversity of the human form and experience and that it can be used as a tool for creativity and a platform to do incredible things. Jess uses her tics as a creative tool which she shares with others to do the same. She created Touretteshero to reframe the narrative and wrote, produced and started in Backstage at Biscuit Land, wrote a book of the same name and has a documentary about performing Beckett’s play Not I. Then I got to meet her – and she recognised me from online as we have mutual friends – most prominently Kirsty (Liddiard) – and often move in similar online circles. So I got to talk to her and we had a great chat and then she signed a copy of her book for me and we said we’d keep in touch. I was a little bit star struck, because I’ve followed Jess online for a long time. That was one of my top highlights, meeting her. Also at WOMAD, the Festival Spirit Team and volunteers, St Christopher’s Team and volunteers and our own carers (including my mum) made WOMAD even better, such great company and I’ve not laughed so much in a long time. Without a doubt, they were some of the best days of my entire life, memories to treasure and experiences I’ll never forget – and forever be shaped by.

Lucy at night at WOMAD

Photograph by Lucy Watts MBE

The thing is, at WOMAD, I could just be Lucy. For once in my life, my ability to do something was not negatively impacted by my illness and disability. I was just the same as any festival-goer. I was a young adult for the first time in years. I can’t tell you how liberating that was. As Festival Spirit had the accessible accommodation and we had the support of St Christopher’s and Mum with me to do all my care, my medical and physical needs faded into the background, paling into insignificance. This was despite the fact I was on intravenous Antibiotics for the sepsis and kidney infection I developed the weekend before WOMAD, on top of all my usual needs. My illness was barely noticeable. We did what we needed to do but our focus was 100% on the festival and the attractions and activities. And not only that, for once I was not in any way defined by my disability, by me or by others. I was not a ‘disabled’ young adult or a ‘disabled’ festival-goer or a ‘disabled’ group member, I was simply me, Lucy, just another person attending and enjoying the festival. I felt so free. I felt like part of something bigger. I felt accepted, welcomed, embraced, valued and appreciated. It really was a pivotal experience in how I perceive myself. With the progression of my condition at 14 I lost who I was; my identity, my hobbies, my hopes and dreams, the goals I had set and the future I had planned for myself. For 5 years, I was completely lost. Then over the last 5 years, I’ve been slowly reclaiming my identity, but this identity even better than the one I had before; one that I’ve found through the extraordinary life I’ve built for myself. This weekend showed me that whilst I embrace my disability and that’ll always be part of my identity – it’s part of me and I refuse to deny it or disassociate from that – that it’s okay to view myself as a person and not just as a disabled person. I am a proud disabled person, that won’t change, but I’ve discovered I’m a person both including and excluding that and that seeing myself as a person first is important. I preach the social model of disability and that disabled people are people first and foremost, and yet I couldn’t see myself as a person first. So WOMAD led to somewhat of a personal epiphany in how I view and perceive myself. Like a puzzle, over the last 5 years I’ve been slowly finding and fitting together the pieces of the puzzle of who I am and why I am here. I feel after WOMAD and my life in recent years, that although not complete, I can fully appreciate the various puzzle pieces, what they mean and why they’re important.

Photo of Lucy

Photograph by Lucy Watts MBE

I do hope to go again next year, although whether it’ll be WOMAD or another festival will be decided nearer the time by St Christopher’s. I’m a festival convert, without a doubt. I didn’t want WOMAD to end, but at the same time I was so tired and ready for home, my own bed and reuniting with Molly, my Assistance Dog. I knew WOMAD would be good, but I couldn’t have foreseen the enormous impact it’d have on me. A transformative experience, as well as an enjoyable one.

By Lucy Watts MBE

Website: www.lucy-watts.co.uk

Twitter: @LucyAlexandria

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Listening to Parents’ Stories

Over the last few weeks, Living Life to the Fullest co-researchers have been working on writing an interview schedule for use with the parents and carers of disabled children and young people with the label of life-threatening and life-limiting impairment (hereby LL/LTIs).

Co-researchers have recently finished data collection with young disabled people living with LL/LTIs. Living Life to the Fullest collected young people’s narratives through a unique peer-to-peer interviewing model, as co-researchers in the Co-Researcher Collective led data collection with fellow young disabled people. In our next phase of the project, co-researchers will undertake a series of qualitative semi-structured interviews with parents and carers, seeking stories of their lived experiences of the intersections of parenting and disability.

An interview schedule is, essentially, ‘a list of open questions that allow the participant to respond in a focussed way to the researcher’s interests’ (Martin, 2016). According to Martin (2016), ‘schedules often outline specific questions, with an order and prompts, and suggested wording’. Co-Researchers collectively wrote an interview schedule that contained questions rooted in lived experiences and their inner worlds of what it means to live short(er) lives as young people with precarious futures. Practically-speaking, this involved co-writing the schedule itself and then coming together to discuss – question by question – whether questions are ethical, sensitive, and ultimately, will enable parents to tell their stories in ways meaningful to them.

These questions, and the reflexive dialogues they create, centre emotion in ways repudiated in much research employed in the field of social sciences. As Jones and Liddiard (2018: 390) proclaim, ‘we follow Burkitt (2012: 458), conceptualising emotion and feeling not as barriers ‘to clear reflexive thought’ but as necessary’. Thus emotion is generative towards a human understanding of disabled childhoods in times of extensive ableism (the cultural privileging of ability) and disablism (the discrimination disabled people face).

As Runswick-Cole et al (2018: 649) suggest, it is imperative ‘to delve into the life worlds of children and their families and to understand lived experience through the lenses of emotion, intimacy, love, care and proximity’. Taking such a position means acknowledging experiences of disability ‘in ways seldom considered in other ways of knowing and theorising childhood’ (Runswick-Cole et al 2018: 649).

Are you the parent of a child or young person living with a life-limiting or life-threatening impairment?

Do you want the chance to tell your own story and speak about your experiences?

If so, we would like to invite you to participate in our research project that seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with life-limiting or life-threatening impairments and their families. We are looking for people to take part in an interview, either over Skype and/or Facebook messenger or email.

Please see here for more information, or email k.liddiard@sheffield.ac.uk

 

References

  1. Burkitt, I. (2012) ‘Emotional Reflexivity: Feeling, Emotion and Imagination in Reflexive Dialogues’, Sociology, 46: 3, 458–472

  2. Jones, L. and Liddiard K. (2017) ‘A Diversity of Crip Childhoods? Considering the Looked After Childhood’. In K. Runswick-Cole, T. Curran and K. Liddiard, (eds.) The Palgrave Handbook of Disabled Children’s Childhood Studies. Basingstoke: Palgrave Ltd

  3. Martin, C. (2016) Qualitative Research Methods: Interviewing. Online. Available from file:///Users/kirstyliddiard/Downloads/Interviewing_MMC_12.1.16.pdf [Accessed 30/7/2018]
  4. Runswick-Cole, K., Curran, T. and Liddiard, K. (eds.) (2018) The Palgrave Handbook of Disabled Children’s Childhood Studies. Basingstoke: Palgrave Ltd.

 

 

 

 

Who are DMD Pathfinders?

Living Life to the Fullest community research partner, DMD Pathfinders, a user-led charity that promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK, has produced a new film about its work.

DMD Pathfinders 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. It is run by young adults with Duchenne Muscular Dystrophy (DMD) for young adults with DMD.

Jon Hastie, CEO, and Mark Chapman, Chair, said, “We are delighted to share with you our short film about DMD Pathfinders and our mission to help young people and adults like ourselves living with Duchenne Muscular Dystrophy”.

You can watch the film on YouTube here.

Jon Hastie - CEO DMD Pathfinders

To learn more about the work of DMD Pathfinders, check out its website. If you would like to support DMD Pathfinders to continue its work, you can donate here.

If you would like to get in touch with DMD Pathfinders if you need advice or want to show your support, contact details are below:

Email: info@dmdpathfinders.org.uk

Call: 01273 252525

Or get in touch via social media

Facebookhttps://www.facebook.com/DMDPathfinders/

Twitter: @dmdpathfinders

 

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