Holding space together
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.
It was long periods of confinement at home due that led me to start posting on Instagram. I eventually stumbled onto a large international community of people like me who have dynamic disabilities and chronic conditions. It was a revelation; they were sharing their grief, rage and joy through art, activism, and images.
Others like me. I have always been ‘the only one’ alone with a very long list of conditions and symptoms that change on a daily basis. Suddenly, I was learning a great deal, more than I had learned in years. 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 people with chronically illnesses and disabilities, attitudes are saturated with ableism from the outside world.
We all have our own internalised ableism to deal with and that is the same for a person with chronic conditions and disabilities. 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, ‘beauty’ is synonymous to ‘health,’ and illness is ugly and should not be inflicted on polite society.
In the late 1800s US, for example, there were even a set of so-called Ugly Laws passed that outlawed the appearance in public of people who were, in the words of one of these laws, “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” (Chicago City Code 1881). The ugly laws did not restrict performances of people with disabilities for the purpose of entertainment or eliciting disgust, but rather restricted people with disabilities from mingling with the general public.
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.
Perhaps the most important lesson of the age is to never assume anything about the ‘other’ but to always keeping judgment at bay, and being mindful of how you yourself treat others because of not despite your own struggles. Don’t think you are not ableist yourself…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.
Like grief, chronic conditions and disabilities are a crash course in dealing with change. You go through the whole gamut of emotions. Sometimes you try and find your better self. Sometimes you are too exhausted to think or move. You do try your best to be kind to yourself and available to others. You do have a willingness to learn like never before. You yearn to escape the confines of your experience instead of letting it define your identity or worldview. Sometimes you manage to love yourself as you are, as a means of survival.
As a child I spent many hours alone due to chronic asthma and allergies. I had difficulty breathing from dust, pollen, mould, changes in weather, cats, dogs, food – you name it. I escaped into drawing and old afternoon film matinées on TV on days off from school. 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 doctor 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, and to shift focus away from my own body. Focussing on the ‘now’ is not always the best thing to do when you are struggling with symptoms. Art 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 this condition.
Art was not something I felt compelled to show. It was my home and way of ‘holding space’ for myself. Of course, I didn’t have these words at the time. But art and illness went hand in hand and personal art projects often spanned many years and decades.
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.
Later on, I managed to shape shift Imaginary Life into a design and communications consultancy and make a living freelancing 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 can try educate ourselves. 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 culture that shapes 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 am still learning about all these crossing identities within myself and how they have shaped how I move through a world always designed for an ‘other’.
As a multi-racial immigrant, a neuro-atypical, middle-aged woman, and as a person with chronic conditions, I don’t want to hide myself anymore. Not to myself or any hypothetical power structure. I am ‘coming out’ as a person with dynamic, complicated chronic conditions, disabilities, and access needs. 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.