When this year started it looked pretty bleak – I had been very ill for a long period and we were searching for answers as to why – then they discovered a small problem which had been underlying many of my severe and unexpected medical emergencies and things started to look up. Somehow I didn’t realise how much I achieved this year until I wrote it all out – but actually it’s been an incredible year and I’ve achieved a huge amount. In writing it all up I’ve skipped all the illness progression and medical terror of the past year to focus on the good things that have happened in my life. Here is my year in review – 2018 – you’ve been amazing, thank you! Here’s to 2019!
January
I started this year still doing the Emerging Disabled Writers workshop series run at the Tate Modern. Shape Arts designed this program where a group of writers come together with a facilitator to do critical feedback work and focus on improving each other’s work on a weekly basis. I really liked the idea of this and got a lot from it, but it was also a steep learning curve, learning how to critique someone’s work fairly. Doing this made it far more possible for me to do other things later – I learned so much about myself and how I work and write.
February
This was probably the quietest month of my year, but I really enjoyed rejuvenating old friendships and seeing people I hadn’t seen in years. There’s something about people that knew you in the past providing a link for you between that and your present.
March
Around the same time as they discovered this treatable condition that had been adding considerably to my health woes and began to get it under control, I was shortlisted for Barbican OpenLab – and to my surprise and utter amazement I was given a place on it. I had applied for it in the January, and it offers you a week’s residency in the Pit Theatre at the Barbican. You don’t get to put your show on, but you get the rehearsal space and tech support. When I applied I had some poems that I called a script, and I somehow had to turn it into a show before my week at the Barbican. Thankfully my Lab wasn’t scheduled in until October, which gave me all the time I needed to prepare.
April
I had an article published in the Guardian about Britain’s public transport system and the way it’s letting down disabled travellers
I was also invited to perform at Invisible Festival, which took place at Rich Mix. I was really happy with the set I brought together, which came from some Shakespeare (exploring having a grotesque body – “I that am not shaped for sportive tricks nor made to court an amorous looking glass; I that am rudely stamp’d”) and what it feels like to take charge of one’s own destiny amidst that. Some of the poetry I read here went on to become part of my script for the OpenLab I did later on that year. This built my confidence performing in front of audiences considerably and I really enjoyed being part of a group of disabled people making art together.
May
With the improvement brought by treating the underlying problem, I applied for Master’s courses. I was offered a place on a prestigious poetry Master’s, but ultimately felt that the intensity of the course was more than my health could manage. I had offers from several universities to do Master’s courses in areas related to health policy and politics, and began one of those Master’s courses in September. I’m determined that people like me aren’t just the topic of health funding debates – we should also be the experts at the table.
I also performed at the Saboteur Awards with Emily Robinson doing a piece called Aseptic. We wrote it jointly to Pecha-Kucha format (20 slides, automatic timer, 20 seconds per slide) to explore the ways ill and disabled bodies become medical real estate, and what it means to exercise agency as a person within that.
June
I got contacted by the Trans Creative Arts Festival and was invited to perform at a night called “Boys Don’t Cry, Boys Create”. I was really disappointed not to be able to travel up to Manchester for this because of limitations on health and social care. I was lucky enough to be able to record two videos of poems which were sent up in my absence. I wish I’d been there, but it was really important to me that my work made it up even if I didn’t. This also means I’ve got two poetry videos ready to release at some point soon!
I also had another article published in the Guardian, this one about my fears around assisted suicide becoming legalised and what that would mean for disabled people.
July
I applied for an employability course through Muscular Dystrophy UK and was offered an internship there, which I did in their policy and campaigns team. The employability course turned out to be happening on a weekend I couldn’t manage, but I was amazed to be offered an internship instead. I found it a really positive and helpful experience, letting me establish what I could and couldn’t manage and what care support I would need in order to do it. After the course, I was offered a series of mentoring sessions, which I delayed until the beginning of 2019, but which I’m really looking forward to starting now.
August
I had an article published by the Wellcome Collection exploring what it means to be young and disabled when your life was controlled by the social care crisis.
Emily Robinson and I were invited to perform Aseptic at Crip Casino at Platform Southwark. Crip Casino was an immersive project by Abi Palmer exploring chance, luck, and institutions, and Emily and I were really pleased to be able to bring the piece again. We had a great time and met some amazing artists as a result.
I had applied for the London Writers’ Awards a while back,and to my surprise I was shortlisted, then offered one of the places for poetry. There are six awardees for poetry and it’s a really structured course, with regular feedback groups and a facilitator. In order to make time to write each day, I’ve had to be very strict with myself, but I’ve gotten a lot from the feedback groups. It feels like an honour to ~@be working with each other’s work, and giving suggestions and advice to help us improve. I’m working towards a collection of nature poetry exploring my relationship with my body, and I’m really getting a lot from this. It feels much like a poetry Master’s would feel, I suspect (though less pressured), and I’m really enjoying it.
At a similar time,I had some early interest from a press who may take a book of poetry and essays, which is an incredible feeling.
September
I started my Masters and really enjoyed it from the outset. The module I took last term focused on the philosophy of healthcare which I found challenging and invigorating, given that I’d done no philosophy before. I’m currently working on the essay for this which is hard, as I’ve never done any academic work at this level before, but I’m really pleased and optimistic about how it’s going.
October
I did my Barbican OpenLab week, and pulled together a solo show titled Not Dying, which explored my relationship the idea of ‘dying’ and how I choose to focus on living in the world.
With this week, I went in with a basic script, and thanks to a lot of help from Liv, Laura, Liam, and my mentor Kate O’Donnell I came out with a solo show that I was able to share with a few people at the end of the week. Doing this was a dream come true – or so I felt at the time. I now can’t wait to turn the ‘proof of concept’ I developed during my residency into a full show.
(spoiler: you might just get the chance to see this show somewhere quite exciting next year – and I’ll be telling you about it soon)
I was also invited back to perform at Transpose 2018 at the Barbican Centre. I hadn’t expected to be invited back, as I’d performed at the two preceding years, but was thrilled to be able to perform there again. I brought two pieces that came from the solo show I had been working on and one new piece, The new piece is probably going to become a show of its own eventually, exploring how people ‘like me’ have always existed, even if we meant very different things by that descriptor.
November
In November I was lucky enough to see one of my favourite living poets, Mark Doty perform live. I haven’t been to many poetry performances before, but being there for that really blew me away.
December
I was invited back to perform at Bromley Disability Pride which I did, and which I thoroughly enjoyed doing. There’s something about creating art with and for people who are, on a fundamental level, “like me”.
I also performed at Transpose on its three night run at the Barbican Centre. There’s nothing like performing for the confidence, the adrenaline, the sense of self-assurance, and although I had a hard time really getting into it, once I was performing it was amazing. My work spanned lots of moods in a way that was both quite challenging and very fulfilling. After Transpose finished, I did feel a bit flat, but I went from that to preparing more work for my solo show, and thus kept the momentum up,
And the soppy bit:
Thanks are due to a number of people who’ve supported me in this (many, many, many of whom I’ll have forgotten in this list), including Toni, Alex & Angie at the Barbican; Emily Robinson for doing Aseptic with me; Claire Trévian at the Saboteur Awards; Dan Bendelman and Jenny Berman at Invisible Festival; Emma, Isabel, Lauren, Jonathan, Clair, Marion, Maddie and Nic at Muscular Dystrophy UK; Kate O’Donnell at Trans Creative Arts Festival, my OpenLab, and Transpose; Zorian and Anna at Trans Creative Arts Festival; Abi Palmer at Crip Casino; Kate, Laura, Liv, and Liam at my OpenLab week; Bobby, Ruth and Mona Arshi at the London Writers’ Awards; Nigel for mentoring me; CN Lester at Transpose, as well as Robin, Holden, Rebekah and Danielle, with Kate directing, Lucy doing lights, Kendal on sound, and Lou as Stage Manager; Nathaniel at Knight Errant; Jack Silver for an upcoming project, and the friends, old (Tom, Vicky, Tristan, Craig, CN, Ed, Ruth, Hannah, Dan, Thines, Rosie, Rosey etc) and new (Lucy, Fi, and my LWA friends Lily, Merrie, Jemilia, Helen and Annie) who’ve made my year amazing.