Berlin: Care and Creativity: Working as a Disabled Artist
I started my training as a dancer fourteen years ago, first at A-Level and then at the University of Brighton as part of their Performance and Visual Arts Bachelors Degree course. I have always been interested in the body and movement and I had dreams of choreographing and creating audiovisual performances and installations. I felt lucky to find a course which was so interdisciplinary, combining classes in dance, performance and movement with classes on moving-image, installation and theoretical writing, but at the time, I had no idea how lucky I was. I say this because during my time at university, I became extremely sick and it had a huge and irreversible impact on my life, my body and my work. My lecturers noticed a change in my energy and urged me to seek medical help.
After eight years of seeking medical ‘help’, which ranged from incompetence to abuse, I had three diagnoses; Fibromyalgia, Polycystic Ovarian Syndrome and Interstitial Cystitis. Three invisible debilitating conditions that have no cure and which cause me to be in constant chronic pain. I swam slowly and painfully through an existence of hospital appointments, countless operations and invasive procedures, housebound, and trying various medications and treatments that often did more harm than good. As I got passed from doctor to clueless doctor, making all of my decisions for me, at their mercy, I mourned the loss of my voice, my agency, my autonomy, and as I began to disassociate more and more, a relationship with my body. Needless to say, I wasn’t dancing anymore. There were large periods of time where I wasn’t really making anything. My sickness had become a full time job and I wasn’t able to deal with much more. I slowly shifted my creative practice, without really thinking about it, and started to film around my apartment, my neighbours red bedsheets blowing on their washing line through my frosted bathroom window, my rescue budgies, or my ex’s feet in the kitchen while cooking. I was able to maintain some kind of practice but I hid my disability from employers and didn’t ever explicitly feature it in my artwork, with the fear and shame that I would be seen as unreliable in some way.
The UK has become expensive to live, especially for low-income disabled artists, and I wasn’t managing financially in London. Five years ago I received funding to come to Berlin to do a language course. Berlin is more affordable and I found a caring and open creative community. I am still based in between here and the UK as I often have to travel for work or medical treatment but I consider Berlin my base for the most part. I had started to come to the realisation that I wasn’t going to get better, that I wasn’t going to be cured and that I was going to be sick forever. After spending a year getting monthly catheterised injections into my bladder, which I will have to do for the rest of my life, I had begun to develop strategies to manage my pain and sickness which are outside the realms of the traditional patriarchal system of Western medicine. On good days I imagine my diagnoses are like Pokemon cards I’ve collected or X-Men superpowers that have enhanced me in other ways. On bad days I am unable to get out of bed, crying, fainting and pissing blood.
Not long after I arrived in Berlin, I made an artwork for the first time in three years. It was a video about my experience of being housebound. It was very abstract as I wasn’t ready to share anything explicitly. It was exhibited by Shape Arts at their [In]Visible (2014) exhibition in London, a charity which promotes and supports disabled artists. I was then selected for an artist residency at a small gallery in Berlin with the amazing Lorena Juan Gutierrez as my mentor, the founder of queer feminist collective, COVEN Berlin.
COVEN Berlin is a sex-positive transdisciplinary genderbender creative collective that was founded in 2013. They have been a constant source of support to me since moving here, both personally and creatively. I am consistently impressed by what this DIY feminist collective are capable of on such limited resources. They are the true punks of the Berlin art scene, unpretentious, thoughtful and present. With them I felt comfortable enough to start creating work which was explicitly about my experience of sickness and disability. It felt important to speak out about my experiences to regain some of the agency and visibility I had lost, with the hope that I could find a community which felt the same. I have exhibited several works with them on these topics since 2016, when I first exhibited Lulika, i4givU, at their weekend long art event, Labor or Labor, at Glogauair Gallery. The work was a digital and physical ritualistic space to forgive my own biology and to invite others to forgive theirs. It is an act that contradicts the common opinion that sick people need to be cured and that people with vulvas should hate their bodies for the monthly pain it puts them through.
COVEN also forged the link between many members of Sickness Affinity Group (SAG), a collective which we founded two years ago to combat the competitive and capitalist nature of the art world, addressing the inaccessibility and general lack of care it supports. SAG also includes members of Feminist Healthcare Research Group, PMS (Power Makes Us Sick) and FemmeFitness, as well as several independent creative and healthcare practitioners.
‘Sickness Affinity Group (SAG) is a group of art workers and activists who work on the topic of sickness/disability and/or are affected by sickness/disability. We function as a support group that challenges the competitive and ableist mode of working in the arts by sharing experiences and information and by prioritizing the well-being and access needs of its group members. We investigate accessibility as both a topic and curatorial method. We aim to celebrate and create room for non-normative bodies, politics, and desires, as well as offering a supportive environment for fragility and wellbeing. Sickness Affinity Group holds bi-monthly meetings in Berlin and maintains an email list. Our members collaborate on projects in small working groups and report back from their process in the bi-monthly meetings.’ – http://www.sicknessaffinity.org/
Sickness Affinity Group has allowed me to find a space in which I can work at my own pace, without feeling a pressure for production. It has soothed my Capricorn desire to grind until burnout and instead I have welcomed in my own unique Crip Time. The focus of the group has been one of support, sharing resources and energy and finding ways in which we can collectively raise awareness of and challenge ableist attitudes within the art world. The culture of support exists not only within the realm of collective creative working but it also extends into our daily lives. We walk each other’s dogs, wash each other’s dishes, help with each other’s bureaucratic documents and accompany each other to doctors appointments. This has allowed us to feel close to one another and open to sharing our feelings, thoughts and ideas, even when it has been hard to. We have found ways to create space for healthy conflict and to resolve conflict healthily.
As well as working with these collectives, last year I began to collaborate with my partner and carer, Alex, or Hang Linton as he is known under his artist alias, on the first performance work I have made since studying dance and performance at university ten years ago. We are low-income artists who cannot afford a studio and often work together in ‘the boffice’ (bed office), in ‘the lab’ (the bedroom). This is an accessible mode of working for us, especially when I’m in too much pain to get up. We are often joined by our third collaborator, stage manager, make-up artist and momager, Livia. Working with two people that I’m personally very close to has allowed me to push my practice in a new direction and to a scale that wouldn’t be possible for me otherwise. Working with Alex not only offers me practical and creative support but it is also provides an important alternative perspective on accessibility, from the experience of someone who is a caregiver, a racialised person, a self-taught artist and musician, who hasn’t attended art school, and someone who experiences cripness and access barriers in a different way to me.
Our collaborative performance work, Baby Punk + Dr. Babuyoka, is a provocative audiovisual explosion of noise, dance, hip hop and technoshamanic rituals where we celebrate our sicknesses and invite the audience to do so with us. Our otherness is expressed through two monstrous trickster characters. We were extremely lucky to gain a grant from Sophiensaele’s Dirty Debut program earlier last year to develop the work right off the bat and performed there last Spring, debuting the full version of the work at COVEN’s exhibition, Lucky, at nGbK last Summer. Since then we have performed in squats, theatres, queer parties, galleries and music festivals and it has become a way to generate income and to extend the awareness of accessibility to an audience which goes beyond the contemporary art field. Alex and I also recently worked on our first collaborative large-scale video installation together, moon babies squidding in The Land of Nod, which is made up of almost completely recycled materials. It is showing as part of a group exhibition of crip art at Baltic39 Gallery in Newcastle, UK. This is the first time Alex has exhibited work in a gallery space and we’ll perform within the installation as Baby Punk + Dr Babuyoka on October 10th.
Offering myself physically in my work has allowed me the visibility to connect with other crip people, either in person or online. Working physically has been exhausting but empowering and I feel as though, with the right support, the exhaustion is worth it. It has given me a platform with which I can give visibility to the crip artist community by sharing my own crip experience publicly. I have the space to challenge preconceptions about sickness, the shame attached to sick bodies, and where sick bodies can exist.
Although Alex and I manage to work around the socioeconomic challenges of being low income artists, by working at home and using recycled materials we collect from the streets, there are other more complicated financial and bureaucratic challenges which are not as easy to solve. Working as a freelance artist doesn’t provide a stable and consistent income and being crip isn’t predictable either, as all of my conditions fluctuate. Many ablebodied artists can manage to work a part-time job on the side of their creative practice but this is very difficult for me when my condition doesn’t allow me much extra energy. This puts added pressure on me to make my art practice financially stable. I’m also not able to afford even the cheapest health insurance in Germany and it is illegal not to have it here. My UK clinic nurses are extremely kind and understanding and pack up all of my medical equipment for me so that I can inject myself wherever I’m working. Learning to inject myself through a catheter wasn’t any mean feat though. It is a procedure that is usually only done in a hospital by medical professionals, doing it at home still requires the support of several people. It also means when my other health issues are flaring up or something new arises, it is difficult for me to see a doctor without insurance.
Despite a variety of challenges, being crip now feels like a blessing most of the time. After ten years of hiding behind cameras and video editing software, I have traveled full circle, from believing that I couldn’t work physically within my practice again to working as a performer and dancer. Since reentering the performance art sector last year, I have been invited to be involved in several dance and movement projects. I recently collaborated with FemmeFitness, ‘where ass shaking meets activism’ on a workshop titled, Sexy Dancing, Femme Empowerment and Agency. I am currently working with choreographer, Ania Novak, on, Inflammations, a choreographed performance exploring chronic pain and fatigue. These jobs have changed my attitude of who can be a dancer and what dance is and it has allowed me to rebuild a lost relationship with this fleshy dysfunctional frame I live in.
Not only has being crip benefited my creative practice in many ways but it has taught me to honour and respect all of the parts of myself that don’t fit into a production driven mode of art working, the parts that are wobbly, slow, painful and inflamed, and to find ways to work with these parts instead of against them. A huge part of learning to do this is through the support of my partner, my friends and my wider network of crip family and colleagues. Collaboration is not only a creative concept, it simply means to ‘work together’, and that exists in care too, and in turn care can also be a creative act if you want it to be. Working together and creating community feels like a radical act in a society that prioritises an individuals worth in a Capitalist system and I feel extremely grateful for all the people around me that work so hard to resist together.
 Crip Time is a term coined by Taraneh Fazeli in Notes for “Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying” in conversation with the Canaries.