Jill Mueller is a London-based artist who believes in the power of art to connect people and transform lives. In her practice, she draws on personal life experience to explore issues related to health, what it means to be human, and how to make meaning in today’s world. Jill’s interdisciplinary practice brings together visual arts, creative writing, story, and research. The creative process and the viewer’s experience are as important to her as any finished artwork.
Hear Jill speak about her work in our event Decoding the Personal that took place in August 2020. Images shown here are part of Jill’s personal project about her experience with a genetic mutation, created in partnership with photographer Maja Daniels.
What is your background as an artist? Where did your practice begin and how has it evolved over time?
I came to making art at age 30 from a career in social services. I didn’t have an art degree but I fell in love with portraiture and the human figure, and with Russian realist painting. In 2007 I began studying in the academic tradition of the ‘old masters’ at a small painting atelier in the US. I began to shape a career as a painter.
I moved to London in 2010. A year later one of my sisters was diagnosed with breast cancer and we discovered she and I both carry a genetic mutation (BRCA1) that gives us a high risk for breast and ovarian cancers. Doctors recommended I remove my breasts and ovaries, and I knew from the start that I wasn’t going to be able to paint my way through this experience – I was skilled at observing the outside world and capturing it on paper or canvas, but not at visually expressing an experience from within. I made a major shift in my practice, turning to writing and reaching out to another artist – photographer Maja Daniels – to work with on a long-term project to document and explore my medical journey.
Through the partnership with Maja I was encouraged to push my own boundaries and stretch beyond my comfort zone. I began working with different materials and thinking about the interplay between texts and images, and in 2016 this led me to an MA Art and Science course at Central Saint Martins, which helped me broaden my practice immensely. Embroidery, printmaking, mixed media, working with text, found objects and archive material, alternative photographic processes, installation – all of these have become a part of my art practice today. (Painting, sadly, has yet to reappear, but I’ll be very surprised if it doesn’t soon.)
I don’t really embrace labels, but today I’d most liken myself to a conceptual artist, focusing on process as much as the aesthetics of the final work and using the materials or techniques that might best get my ideas across – while leaving space for a viewer to make their own meaning from it. In broad terms, exploring what it means to be human is central to my practice. Personal experience and connection are at the core of all my work now, and I’ve learned to allow projects to emerge and take shape over time as a story unfolds.
You and Maja have brought together texts and images in a book format that you are now aiming to publish. Which art form (writing, photography, stitching etc) came first and informed the work the most?
It’s difficult to know which art form came first or most informed the work! The project began as an idea without shape or borders. I simply knew I wanted to do something creative, and invited Maja and her camera in to witness me at my most vulnerable. I didn’t really know Maja then, but I had a gut feeling about her and I determined to be as open as possible with her. We had regular discussions about my thoughts and emotions; she attended most of my medical appointments and began photographing; I began sharing short texts with her. Our regular exchanges nourished the creative development of the project, but it was a slow journey.
It wasn’t until a year after we started working together that we rented a studio together for a month and the project entered a new creative phase. Our discussions informed my new writings and Maja’s ideas around still life photos, and Maja also asked me to respond to some of the images she’d taken of me. That is when I found my way to stitching on photographs. I was surprised by how my physical engagement with some of those images – the visceral piercing of the paper and pulling of thread –enabled me to take back control of some of the more difficult moments of my medical experience. I began to reshape my medical narrative, and my connection to the project as artist (rather than patient) grew.
I was really struck by the honesty of your writing. How easy does that come to you? Have you always written reflections/a diary?
I believe that writing honestly is essential to conveying the larger, messy truth of any experience. When I feel vulnerable or stuck for words, I sometimes write a draft in the third person as if an experience is happening to someone else or to a character in a novel. Any self-judgement or criticism immediately disappears and I’m able to empathise with what this other person thinks or feels. Of course I know that I am writing about my own inner experience, but somehow this allows for a raw honesty, and the language opens up.
Although I don’t write consistently, I’ve always written my way through interesting and challenging experiences, in a journal or as letters. I come from a large family who all live in the US, and I’ve often written to them about my experiences as I move about the world. I suppose I have always written with the intent to share a unique human experience with an audience who may be physically or experientially a world away.
I envision myself as a robot, a machine—some parts removed, others added. I will move through space scarred and hollow, my body reacting as much to the man-made parts of me as to the natural ones—the plastic device placed in my womb to release a synthetic progesterone, the hormone patch attached to my hip that releases synthetic oestrogen. And we mustn’t forget the breasts, the silicone in my chest—silicone bags feigning breasts and sensuality but revealed by their high lift, scars and lack of nipples.
Regular maintenance will be required. The IUD will have to be removed and replaced after five years; the oestrogen patch must be changed twice a week for the next 12 years; and my body will react to the implants like foreign objects, tightly wrapping them in a layer of scar tissue that will likely warp and harden over time. They will require replacement several times over the coming decades. The machine must be maintained. But it will be alive.
The cavities that will be carved into my body take on solidity as they occupy the space where the human tissue was. And rather than cancer taking root and pushing out into my body, the hollows that will be left by the loss of my breasts and ovaries pull at my psyche like a black hole, and I stare balefully into them from the event horizon.
As part of this interview we approached photographer Maja Daniels to ask about her experience of working with Jill.
What were your thoughts when Jill approached you with such a complicated and deeply personal subject for a collaboration? What excited you but also what apprehensions did you have?
Maja: I was intrigued when Jill approached me. I have always been inquisitive about the role of photography. All works are of course different and unique, but I have a long and profound engagement with and around ideas of representation and collaboration, which is also what I have based my studies in sociology around. Jill had seen a photographic series I had made related to Alzheimer’s disease and the geriatric institution which resonated with her. What she did not know was that I was in the middle of a process of reassessing my practice and deeply questioning the role of the image within a documentary practice, thinking about how to make photographic narratives more performative yet still distinctly photographic. I felt deeply motivated to question the foundations of the photograph as document and the more traditional ways of thinking about representation and collaboration. I was interested in the processes (cultural, social) that had propelled Jill to call on me, to ask me to see her through the medical journey and physical transformation she had decided to go through and what that actually meant. I decided to accept her proposal and become a part of her journey with the intent to try to understand what the photograph could actively do within this particular context.
Maja: I was excited about how the particular setup – the subject as initiator as well as the particular issues at hand: genetics, navigating risk and family relations in connection with heredity – could provide a context to think about and push some notions too often taken for granted in relation to photography, such as collaboration (how can it ever be truly collaborative?) and representation (is it ever possible to represent someone else’s experience, regardless of how closely or intimately involved?). Also, I was of course interested in and intrigued by the process that had driven Jill to ask me and my camera to become a part of the medical and psychological process and physical transformation she had decided to go through. What could the photograph do for her within this very particular context?
Maja: Perhaps it all began for me as a sociological experiment, but later Jill and I reassessed the project as she pursued her writing and gained more authorship over the whole process – which I think has been crucial in order for the work to really find its feet. As the project and our relationship has evolved, I think about it less and less as a collaboration. To me this is really Jill’s work, and the way she got me involved is just part of her own artistic process of shaping her experience the way she needed to in order to make sense of it.
“POSITIVE FOR A DELETERIOUS MUTATION. Positive is misleading. A word to catch your eye and give you hope that you have evaded something. Don’t be fooled. This is a letter sharing negative news. Perhaps the worst news.
Or perhaps not. Ambiguous phrases dot the landscape, hidden within dense fine print: “current state of scientific understanding at the time this report was issued,” and “classification and interpretation of such variants may change,” or “exact risk…has not been determined.” Phrases coupled with outrageous statistics and vague quantifications of risk. Asking you to make unthinkable decisions based on uncertain and unknowable odds.”
“When a person tests for a hereditary genetic mutation, their family is implicated too. Parents and siblings and children lose the right to choose for themselves what they are ready to question, what they are prepared to face. They are forced to consider if and when to act—first by taking a test, and later around other potential actions. (Unless the patient chooses to keep her test results private—but this raises a separate ethical question.)
Because of her age and the aggressiveness of her cancer, my sister’s test was medically necessary as part of her course of treatment. Her choice—and ours—were made for us.”
So much of the story throughout the work is the shared experience of losing your father, of your family history with cancer and your sister’s diagnosis and treatment. What decisions about the work have been impacted by your feelings or considerations toward your family members?
My response to my BRCA status cannot be separated from my experience of my sister’s and my dad’s illnesses. But I am also very aware that memory is fallible, that we each remember our own version of any single event and have our own emotions connected to it. I didn’t want to bring any distress to my family by writing or making work about our shared experiences that they might see differently than I do or find upsetting. And I respect their privacy. So that was all very present in my mind when thinking about what I might share publicly. I shared some images and later drafts of the texts with my immediate family – that was important to me – and I wanted to be sure that my sister was comfortable with anything I put into the public eye about her cancer. This was often emotional, but there’s been very little I’ve changed in the texts after we’ve spoken – perhaps only a small detail or softening a word here or there. My sister and the rest of my family have been super supportive about me telling my story in my own way.
You could say I wrote two books in this process. The first one was a memory dump. I needed to process my father’s death in light of what I was now going through, as well as my fears (and my family’s fears) around my sister’s cancer. I didn’t see much of this earlier writing as part of the collaboration with Maja, but as something I was doing alongside it. In retrospect it was just something that needed to happen in order to reach a point where I could choose to tell the story that I wanted to, rather than what I felt emotionally compelled to say. This means the current collaborative book leaves out a lot about my dad’s and sister’s cancer experiences, focusing instead on how pieces of their stories might reveal deeper layers to mine.
How did your partner Jeff process his/your experience through the work (if at all)?
Jeff has been a rock through my medical experience (and as a partner to an artist). He immediately embraced the idea of me bringing Maja into my/our experience and me exploring the process in a way that would one day become very public. He’s the only other person who’s seen every image we’ve taken and has spent time with Maja and me in the studio, and of course at doctor appointments. I often read him texts I’ve written, and I suppose that’s given him some insight into my inner thoughts that he might not have otherwise had. He used to work in journalism as an editor, so he’s also an excellent person to have in my pocket for copyediting needs or to make sure I’m saying what I want to, that my meaning is clear (he even found a typo in this very sentence!) – and he’s so generous with his time. I feel so lucky to have him by my side, for so many reasons.
The vulnerability, tenderness and openness to an otherwise private world is a real insight into the journey and experience you’ve been through. How do you (or would you like to) use the experience you’ve shared to speak about the patient experience to different communities? i.e medical students, doctors, surgeons, others going through a similar experience.
All of us will become patients at some point in our lives. As personalised medicine becomes increasingly available, many more of us may be facing similar decisions to mine – presented with preventive choices based on genetics and presumed risk. Medical appointments are the punctuation marks to the patient journey, but most of the emotional process or inner transformation takes place outside the clinic and within our daily life and inner thoughts. I think art can provide a safe space to engage challenging or difficult issues; it is a window or a side door into the room.
In 2018 I exhibited Anatomy of a Choice, an installation that invites viewers to peer through peepholes into an enclosed structure to glimpse the BRCA patient’s (my) inner world. After seeing it, one of my consultants told me he’d suddenly recognised that his patients have a life that extends beyond the examination room or operating theatre or his care. I was surprised by his reaction, and so pleased. Through the artwork I became more than a patient – I was an individual with an outside life and an experience. And allowing the art to tell my story provided a voice for other patients as well, an opportunity to remind health professionals that we are all individuals outside the clinic. I continue to try to do this in other ways. I co-present to medical students at UCL about the BRCA patient experience a few times per year, and more recently about art and medicine. The feedback from these sessions is extremely gratifying. By the end of the talk, many of these future doctors seem to get it – they understand how a patient is impacted beyond the clinical setting, what it is like for us.
My intent has always been to share this story as a way to create connection and empathy for one another’s experiences. This is my story, but more importantly it is a story that represents our broader human experience. As a woman and a daughter and a sister and a partner and a patient and an artist. Life is nuanced and complicated and horrific and beautiful. Stories like this can speak to so many of us. As a portable, physical object, a book provides an intimate way into an experience and can reach diverse and wide-ranging audiences that other artworks physically can’t – I hope to get this project out into the world in that way.