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.
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 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.
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.
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