What if we viewed lived experience as an asset? As an asset of professional, economic,…
This weekend, for the first time in a long time, I was simply a young adult. A festival-goer just like everyone else. Thanks to two incredible charities, Festival Spirit and St Christopher’s Hospice, I was able to go to WOMAD (World of Music, Arts & Dance) Festival near Malmesbury in Wiltshire, held on the Charlton Park estate, and experience the incredible atmosphere, attractions, music, performances and activities at the festival. It’s been a real highlight, not just of this year, but of my life.
So much of my life is medicalised. 24 hour care means I have clinical staff in my home 24/7. Throughout the day and night, medical and care procedures are performed and needs are met. My life can feel like one long medical procedure. My life can be very rigid by nature of a complex, life-limiting condition, though I try to grasp little freedoms where I can. However, much of my life that I manage to fit in around my needs and the routines and all these dictate, it’s often only for voluntary work. I often don’t get a chance to do things solely for fun (my work is fun and gives me enormous joy and satisfaction, but my work is about other people, it’s not something purely for my own personal pleasure and enjoyment). I’ve missed out on so much courtesy of my condition. After a childhood full of problems and seeing various professionals and having different interventions at different times, I became seriously ill and physically disabled aged 14. Since then, I’ve lost most aspects of a normal life. I was left behind by many friends, their lives on the up and yet I was regressing and needing more and more help, isolated from the world and prevented from all the young adult experiences my friends had. My life was getting smaller and smaller and I lost my identity along the way. My life became so medicalised and I didn’t really have a sense of self outside my illness. However, I have managed to live a rather incredible life over the last 5 years, palliative care facilitating the best possible quality of life and the hospice putting me in touch with my first speech and thus kicking off my voluntary work, reclaiming an identity (and an extraordinary one at that) and in the process given me some of the best years of my life – which I believe has enabled me to exceed my prognosis – but I have still lacked fun, exciting and carefree “young adult” opportunities.
Then, this happened. Philippa Sellars of St Christopher’s Hospice asked me if I wanted to come to WOMAD with St Christopher’s and without hesitation, I jumped at the chance. I was told about the incredible charity Festival Spirit who provide fully accessible “camping” (if you can even call it that) facilities at different festivals, a charity that enable life-limited and disabled young people the opportunity to attend and experience festivals that, without their facilities, would be impossible due to the physical and medical needs we have. Festival Spirit have a large tent with hard floors, electricity, profiling beds, hoists, carers’ beds, heating, an area to charge our wheelchairs and they even purchased a fridge for me to store my TPN (intravenous feed) as that must be kept refrigerated. The facilities are second to none, as you’ll see below. Without these facilities, my dream of one day going to a festival would never have been realised. Thanks to Festival Spirit for their incredible work and dedication to young people like me, and the facilities they provide, as well as to St Christopher’s for inviting me to come with them, I’ve fulfilled a dream and had some of the best days of my life – and I am not exaggerating.
WOMAD was incredible. The whole experience was incredible. For four days, I was Lucy. I was a young adult. I was a festival-goer. I was part of a group. I was doing something many people do. I was myself. I was not a ‘disabled’ young adult, or a ‘disabled’ festival-goer, or a ‘disabled’ group member, I was simply me. My medical needs and disability faded into near insignificance whilst we were there. Because everything was geared up to meeting my needs, they just melted into the background. For the first time in a long time, my disability didn’t have any negative impact on my ability to do something. I cannot tell you how liberating that is. And, I look forward to future festivals with St Christopher’s and Festival Spirit, because I want to do it again, and again, every year if possible. It was also wonderful to be able to escape the monotony of dealing with problems all the time, feeling like you’re constantly fighting fires, escaping all the bureaucracy in my life, escaping the care package issues that I have and escaping the normal stresses, strains and pressures of life.
So, here are some highlights of mine from WOMAD 2018.
Nothing can prepare a festival ‘virgin’ (as I was) for the unmistakeable electric, euphoric, welcoming and inclusive atmosphere of a festival like WOMAD. It is incredible. To be part of that atmosphere created a sense of belonging and of being part of something bigger – so often disabled people like me are separate and yet at WOMAD, we were included, wanted, valued, appreciated, welcomed, embraced and catered for just like everyone else. We were no different to other festival-goers. That is incredibly powerful. Unless you’ve experienced that atmosphere of a festival, you can’t truly appreciate it.
There was so much great music at WOMAD. Some of my favourites were Ezra Collective, Amadou and Mariam, Ken Boothe, a Bollywood-inspired band (whose name escapes me) and Goldie, but there were other great acts whose names I’ve forgotten. Ezra Collective were amazing, their drummer’s hands drummed inhumanly, impossibly fast, and the music was great, we missed the interactive ending sadly though. Amadou and Mariam are husband and wife and both are blind, they’ve never seen each other, and they performed an amazing set – it was in French and despite not understanding the words, the music, rhythm, their talent, passion and enthusiasm, and the overall vibe – it was ‘get up and move’ music – made it something extremely special to watch and listen. Ken Boothe kicked us off on Thursday night with some great music too.
[Yes, she deserves her own section!]
So, if you don’t know who Jessica Thom is, you really have missed out. Jessica is a comedian and performer who has a disability; namely, she is a person with Tourette’s syndrome and uses a wheelchair. She was speaking in the World of Words about living with a disability and how Tourette’s can be viewed so negatively, and yet it can also be harnessed as an artistic tool. Jess created Touretteshero (https://www.touretteshero.com) to raise awareness of the positive side of living with Tourette’s and on the website is a growing list of tics which are then able to be used by others in art, poetry, music, dance, and anything else it can inspire. Jess is a comedian, performer and an amazing advocate. Please do check her out. She’s done so much incredible work, including performing Not I, By Samuel Beckett as a relaxed performance, overcoming the Beckett estate’s strict criteria for performing the play/piece, as well as a play called Backstage in Biscuit Land (inspired by her most common vocal tic, biscuit), as well as writing a book for which Stephen Fry wrote the foreword. In her speech, she covered the social model of disability, educating a mostly non-disabled audience in a way that was both informative and inspiring, but also contained humour. Jess embraces her tics, they are a source of humour, of artistic inspiration, and as Jess says, her brain notices far more about the world around her than most do. I also loved that the sign language interpreter, who was having to keep up with Jess’ speech as well as the various tics, interpreted every single tic in her speech – there was no ‘polishing’ or ‘cleaning’ Jess’ speech to remove the tics – and rightly so. We were all in hysterics at points and I’ve got to say, that is one of my most favourite speeches I’ve ever witnessed. You know why? Jessica was real. She was Jess. She embraced all of herself. And she challenged the stigma that tics are an inherently negative thing – in the process showing that disability is not an inherently negative attribute. It’s who we are. Why should we hide, suppress or deny that aspect of ourselves? We are not our disability, but it’s part of us. Jess also talked about how diversity is not a negative thing and disability is a natural diversity in the human form and experience. I thought her speech was excellent. Then, I had the incredible honour of meeting and talking to her – I mean, wow! And she recognised me whilst she was speaking and so we talked for a minute or two before she started signing books. We’ll definitely stay in touch. And I couldn’t not her her booked signed, could I? I love what she wrote “with love, solidarity and biscuits”. This is a huge highlight of WOMAD.
Being with friends & wonderful people:
I couldn’t have asked for a better team of people to accompany us to the festival, but also other young people. We had two friends of mine, Junior who I’ve known for about 4 years with whom I work at the Open University Sexuality Alliance, and then Ravi, who I met at Jacksplace in Winchester in 2013. Then there was the other young adults, Caris, Murat, Dan, Ahmet, Samuel and Kirsty. Sadly, Kirsty had her festival cut short by illness. Then there was the St Christopher’s Team, the volunteers and then the Festival Spirit team including Dave, Steve and Katherine and others. It was simply perfect. We had such a great time. Steve even had me dancing at one point! It truly was made even better by the people we were with. Such fun, great conversations, laughter; who could ask for more? I even managed to give mum a break for a few hours as I went off with a couple of the St Christopher’s team and volunteers whilst mum sat back at the tent and chilled.
|Some of the group (Junior & Ravi are missing from this photo)
|With Ravi, mum, Donna & Ravi’s carers
|With mum & Katherine
|With Philippa, Anne and Georgie
I could go on and on about WOMAD and the breathtaking experience I had there. Thank you to everyone who made it happen. For giving me the chance to be a young adult for a change. For giving me experiences I never thought I’d have. For making me smile and laugh continuously for the whole time we were there. Thank you all so much. Thank you to St Christopher’s for inviting us and for your fantastic team of staff and volunteers. Thank you also to Festival Spirit for giving young adults like me with complex medical needs and physical disabilities the opportunity to enjoy festivals, giving us unforgettable experiences, memories to treasure, and allowing us to experience and be part of something that for once, has nothing to do with our disability, allowing our disabilities and medical needs to fade into the background whilst we enjoy ourselves and for opening up the opportunity to be a young adult through the facilities and support you provide. Thank you all.
Now I am going to overwhelm you all with more photos! I took so many.
|With Mum & Katherine watching Amadou & Mariam
|IVs at a festival? No Problem!