A family visit

Holding space

Holding space means being physically, mentally, and emotionally present for someone to support them as they process their experiences and feelings. An important aspect of holding space is keeping judgment at bay, and being mindful of how you yourself respond while you are present.

Holding Space is also a new project and open call from US based activist-curator Whitney Mashburn, to “create an intentional art space, bearing witness to the lived experience of those marginalised by chronic illness: exhibitions, interviews, manifestos.”

It was long periods of confinement at home due to chronic illnesses and severe chemical and fragrance sensitivities that led me to start posting on Instagram. I eventually found Whitney, and through Whitney, came into contact with others like me.

Others like me. This was a revelation. I have always been ‘the only one’. Suddenly, I was meeting more people like me online, and learning a great deal from them; more than I had learned in decades. I also learned about my own ableism.

Ableism is a relatively new word that came into use around the 80’s, meaning discrimination in favour of able-bodied people. When it comes to holding space for chronically ill and disabled people, attitudes are saturated with ableism from the outside world.

We all have our own internalised ableism to deal with. From the earliest age we are taught that typical abilities are superior to atypical ones, able bodies are desired above disabled ones, productivity is better than rest, and ‘beauty’ is synonymous to ‘health.’

All this and more means that in the collective subconscious ‘disability’ stands contrary to everything beautiful, good, useful, worthy, justified, and correct. We see it in films all the time; from Captain Hook to Dr. No, the villain is either disfigured, disabled or faking it.

Don’t think you are not ableist…or racist, or sexist, or ageist, or homophobic or anything else for that matter. None of us are immune to any of these things, no matter how good we think we are. It’s systemic. It is the water we drink, the air we breathe, the cities we live in. It’s our collective inheritance.

Severe illness, like grief, is a crash course in self-awareness. You go through the whole gamut of emotions. Sometimes you try and find your better self and face your demons. You do have a willingness to learn like never before. You yearn to escape the confines of your limited experience instead of letting it define your worldview. And sometimes you manage to love yourself as a means of survival.

I am still coming to terms with all these things within myself – as a multi-racial immigrant, a neuro-atypical, middle-aged woman, and as a person with chronic illnesses.

As a child I spent many hours alone due to illness. I had difficulty breathing from dust, pollen, mould, changes in weather, cats, dogs, food – you name it. I escaped into drawing and old film matinées on TV. I started taking photographs in my twenties when I bought a manual Olympus camera. It was around about this time that I began documenting my many clinic and hospital visits and the beds I slept in.

Art was a quiet companion and a good listener. It taught me how to meditate before I had even heard the word. It was an antidote to the constant fear of anaphylactic shock – not being able to breathe from my throat swelling up – and the many other symptoms that accompany my condition.

Art was not something I felt compelled to show. It was my home. My way of holding space for myself. Of course, I didn’t have these words at the time. I didn’t even have words to describe what was happening to me. But art and illness went hand in hand. My personal art projects have always been open-ended, often spanning many years and decades. They are a way to pause and reflect and explore notions of wellness and identity.

In the nineties, every night, I would see the neon lights of a hypermarket spelling out the words ‘Better Life’ across a night sky from a train home through Osaka after teaching English. Imaginary Life became a name in lieu of an artist’s name; a means to explore complex identity issues with other artist-minds in the safety of collective anonymity.

As a younger woman I managed to shape shift Imaginary Life into a consultancy so I could make a living in the creative sectors. That made me fully aware that all my inter-sectional perspectives, my différence, are also tied up in identities that my employers were completely ignorant of or even at odds with.

These perspectives persist as I grow older. I always find myself on the outside, something the pandemic in Sweden has brought into sharp focus. It’s not something you can forget, even when staying at home for extended periods of time.

You don’t need to be on the receiving end of any -ism to be aware of it. We are constantly confronted with our own hyper-awareness. Every time we read. Every conversation and every meeting. Every time we “can” or “can’t” or “are” or “aren’t.” Those challenges can be real or perceived, but they are all part of the surrounding ‘noumena’ or the ‘phenomena’ that shape our reality.

The artist Joseph Beuys described illness as a release; a gateway to deepen our insights, spirituality, and transformation. His views on suffering, self-healing, the interaction between the sufferer and the healing process itself were many years ahead of his time.

Beuys’ trauma and near-death experience influenced all his work as shaman-artist, teacher and radical ecologist. To be ill, he believed, is to be human.

I don’t want to hide my illnesses anymore. Not to myself or any hypothetical other. I am coming out as a person with dynamic, complicated chronic illnesses and disabilities. And in doing so, I will hold space to all the complex, creative, hopeful, loving, traumatised, joy-loving, angry, beautifully contradictory parts of myself that I share with so many others.

Thank you Whitney for prompting us.

Dec 2021



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