Exploration into the frustration, isolation and restriction which come from living with a chronic health condition.
The above video contains no sound
This piece explores notions of limitation and how that can impact on personal freedoms. The video shows a lone figure sat on a bed. Around them the world passes by: echoes of other selves move past and faded alternatives of what this figure could be doing flicker briefly through the shot. Haunting faceless figures also appear: a personification of the inner frustration, isolation, and unhappiness which can arise from restriction and limitation.
Restrictions, limitations and isolation are many chronically ill and disabled people’s daily lived experience. I would hope that having lived through lockdown (and had a tiny glimpse into the sort of life some people have to endure constantly) able-bodied people may be able to have more sympathy and compassion for those who cannot engage with the world as they can.
Inspiration and story behind the work
As a chronically ill person my life is limited and restrictions on my physical and mental capacities affect my daily life. When lockdown happened I-like most others- was stripped of many of the constant burdens of ‘normal’ life: furloughed from work, events cancelled, etc. This gave me the capacity and freedom to concentrate on my health and after months of focused attention during lockdown I found very beneficial results. Through careful pacing techniques I was able to stay awake consistently throughout the day, to think clearly for prolonged periods of time, to begin exercising a little, my body stopped aching, my brain began to work. For many people these sorts of things are completely normal, but for me to be able to experience this level of health was amazing and utterly liberating.
Obviously, I was struck by the opposite way I experience life. Under ‘normal’ conditions I feel limited due to my health, where most feel a sense of freedom. Under lockdown-without pressures of ‘normal’ society-I was able to feel a liberation due to better health when many felt their freedoms restricted.
After my job came to an end during lockdown I had to seek new employment. This had a dramatically negative impact on my health, from which I have not recovered.
I felt it important to explore this because, the pandemic is not over. The Westminster governments definition of freedom-like many of it’s other policies- are leaving the disabled and chronically ill isolated, unsupported and alone. We are constantly told the pandemic is over, ‘freedom’ has returned, yet many clinically vulnerable people-for which covid19 would be a death sentence- are still shielding, only now without the financial support of government and understanding for the public.
Whilst accessibility was increased in many areas under lockdown-events moved online, workers encouraged to work at home, flexible working hours, etc. These are things which disabled, and chronically ill people have been asking for for years and not receiving. These are now being taken away leaving us once again isolated, unable to access events and work. Ultimately the questions remains-why, when these provisions were needed by able bodied people were they so quickly and easily provided, yet when constantly requested by disabled and chronically ill people they were not given? And why are they being rolled back now many able-bodied people don’t need them? It seems obvious that, once again, disabled and chronically ill people are being pushed to the side-lines.
Thoughts and Themes
I very much enjoy expressing through the body and movement-or lack of in this piece! The figure is deliberately very still. One of my initial starting points was the idea of a stone in a stream-where the stream flows past constantly. Within this film I wanted life to be flowing constantly past and around the stone-like figure who is static and unable to engage with it. The masked figures which represent concepts such as inner turmoil, frustration and isolation do move. This is because it can seem these things have more presence and power then the individual within these situations sometimes.
I also feel space and place to be important within work. I chose the bed for this piece as many people with chronic illnesses are confined-if not to their bed, then to their own home. I wanted the piece to be isolated, and confined to on small domestic space-as this is often the lived experience of people with chronic illnesses.
I was drawn to the idea of anonymity too. We never really see the main figures face, the masked figures are obviously unidentifiable, and the ghostly figures are only hinted at. Again, living with a chronic illness it becomes increasingly difficult to lead a normal life and to engage with the outside world-it can feel like you become anonymous and voiceless.
The process of making
I wanted to try to express how life feels like it is passing you by when you don’t have the health to engage with it. The world around the figure is in constant movement and flux as it continues, yet they are unable to engage with it. This I did through premier pro-using layers.
There are faded background layers- these are of the bed and translucent figures flitting around in the space. Originally I just wanted the folds on the bedding to be moving, but caught myself on the film and whilst playing around in premier preferred the version with the ghostly figures. The next layers are those of the masked figures. The top layer is that of the person sat on the bed-here I cut that figure out and made the rest of the layer invisible, therefore allowing the other backgrounds to come through. These are processes I haven’t used before but I learnt a lot through creating this film and enjoyed it greatly, I feel the work is not perfect, but with my limited premier knowledge and a 8 year old laptop I am happy with the result.
I began the process when my health was in a good place, however this did not last. The piece was almost complete when I had a major ME/CFS relapse and had to put it on hold. Fortunately my health is a little better now and I have been able to complete it.
The current version has no sound, I am considering creating a version with audio, but for the time I will take a little rest!