A selection of my contributions to the open call put out by British Indian, multidisciplinary artist Rupi Dhillon. Asking artists in isolation due to the pandemic to create a performance a day during April. Creating a large participatory art piece together. To learn more about Rupi Dhillon and Go For a Performance: follow link.

In response to the open call I chose to develop a performance element to a current series of textile pieces I am working on titled 'Undressing Trauma' about PTSD caused by my experiences as a patient.

Day 1-

Undressing trauma

'Walking aids'

Performance 1/ Day 1

As someone who has in the very recent past lived in similarly isolated conditions due to serious illnesses the current moment is both extremely familiar to me and extremely strange. There is an uncanniness to how I am living, I feel privileged to know how to live like this and I feel triggered by having to do it again. I feel defensive of this way of life and those who criticize it as somehow less, whilst also wanting to resist being brought back here. I am torn. I feel scared for myself and others and I feel hopeful that better accessibility practises will come out of this time. I will be exploring an inner tearing, a torn dialogue about isolated living. I will explore this dialogue in these daily performances. 

The first ‘Day 1’ is the beginning in a short series called ‘Walking aids’. The first few years I was sick, I lived mostly in a house & although walking aids could have helped me go outside of my house more often, I didn’t use them for a long time. When I began using them I knew they were empowering me, but the reactions I faced in society for using walking aids as a young person was opposed to this. I was pitied. 

Day 3-

Undressing trauma

'I have been here before'

Performance 3/ Day 3

For day 3 I stitched the words "I have been here before" and 2 daisies my nephew picked for me on his allotted exercise trip into medical gauze. I then threw the gauze out the window to touch the ground so I could connect with the outside. Oscar Vinter documented the performance.

I have been too sick to leave the house again today, too sick to walk downstairs, my partner had to hold my weight on the way to the bathroom, I haven't had fatigue like this for a while. But it's incredibly familiar.

I not as sick as I was last year but the feeling of not being able to manoeuvre my own legs, of feeling so unstable is familiar. I have been here before. Not being able to leave the house because of illness for long periods of time. I have been here before. Being scared for my own survival. I have been here before. I thought my previous isolation was a strength in this because I had the skills and knowledge to cope but today it feels very hard. If it gets worse and I have to get medical help will my compromised airway and specialist intubation procedure be too much in this climate of scarce resources. I had to fundraise to have surgery abroad last year because my rare condition was considered too risky to treat. Now they are making lists of who is worth treatment. I have been here before. I am scared shitless and I have been here before. 

Day 30-

Extreme Precautions - knowledge share final performance. 
Go For a Performance

This performance was a knowledge share from a journey we had to take  to hospital for a treatment I was having. We had to go to hospital for treatment. Both myself and another member of my house have pre existing conditions that make us more vulnerable to serious complications from Covid 19. 

Although we think we may have already had it as a household there is no way of knowing right now as there is poor access to testing. And the current research on building immunity post infection was inconclusive, so even if we had been infected previously we don't have any assurance that we would now be immune.

We were also going to the women's hospital where there are usually lots of new born babies, so we didn't want to risk bringing anything with us from the train into the hospital.

So because of our situation we are taking extreme precautions. However, I am aware that these are not accessible to everyone, I required assistance in carrying them out and after our deep clean I fell asleep for a couple of hours, it was pretty exhausting, emotionally and physically. The pressure on key workers who may also have underlying health conditions right now must be horrific. And even those who don't.

We prepared our bathroom for a deep clean, left doors open inside the house for an easy route, we wore layers, all clothes that could be washed together as soon as we got home. We wore masks, I wore one gloved hand,one ungloved. Gloved for touching anything not on my person. Gloved for personal items. At hospital you have to remove the glove and wash at the washing station.
 

We carried our stuff in plastic bags and disinfected all our stuff when we got home, including our shoes. We usually avoid single use plastic and are very eco, except for accessibility and medical requirements, (infection control is a medical requirement). So no ableism dressed up as environmentalism please.  

We didn't sit on the train, again not super accessible, I had my walking stick. It was harder in the hospital as lots of the doors have to be pulled open, but we used the washing station on the way in and hand sanitizer on the way out.

After our deep clean we disinfected anything we touched on the way into the house. This is not a sustainable daily practice but if you are able to avoid going out as possible but have to visit a hospital for any reason, some of these precautions may be doable! My next injection is in three months time, so u less lockdown ends I don't have another reason to leave the house or be at risk luckily.

Babmag published an article by Hope Talbot about Rupi Dhillons project and included one of my pieces in the article. Check it out here.

Accessibility is a priority: I am working on improving the accessibility of this website & adding Alt text to all images. I am new to website building, any feedback on how to make this website more accessible is apreciated.

Email: sickofbeingpatient@gmail.com

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