I was scrolling through Instagram one day when I stumbled upon this new piece that Johanna Hedva, a disabled activist, had written titled ‘Get Well Soon‘. In my early years of being sick, it was what everyone said to me – Hope you feel better soon. It is such a well meaning and kind way of saying – I hope this illness passes and you feel better again. But when the illness didn’t pass, I needed to find language that soothed me and also allowed me to remember that sometimes an illness can be like the waves of the ocean – it comes and goes.
Currently, we are encountering a new illness the world over. Some of the scientific understanding shows us that even when we get through this pandemic, many of our bodies will still need care and support. In this piece, Fiona Lowenstein, discusses what recovery from the Covid-19 possibly looks like. She says: “When I tested positive for coronavirus on March 17, I didn’t know what to expect. Much remains unknown about the virus, and many of the symptoms I experienced, such as gastrointestinal issues and loss of smell, were only just being identified. In the weeks since, the world has learned more about what the virus’s symptoms can look like, but we still don’t know much about the long-term health impacts, the possibility of immunity, how long infected patients remain contagious, or what recovery looks like”.
As someone who has been ill for a long time, I have had to rely on care and support from many people. This wisdom, which for me for the most part has come from the disabled community, has been useful in this moment in time. Disabled people have engaged with the medical and health industry out of a lack of choice. We have spent decades asking for better, cheaper and more accessible health care for all. We have challenged a lot of ways in which there was systemic de-humanisation of some bodies and how healing is not a linear, or necessarily a fast process. As we learn more about the uncertainties around this virus and our healing collectively from it, I turned to what disability justice activists have been saying, not just about building better health care systems but about nurturing our own webs of care.
We must however be aware of who we care for, who gets left out of our care circles – both in systemic ways as well as in our day to day practices. In our latest podcast episode ‘Building Webs of Care’, I explore the terrains of care starting from how I began to engage with it, as and when I needed care from others. I share how my own conflict with independence and not needing help were challenged through this process as I made my way to the space of collective care and well-being, supported by the wise words of many activists and writers from the field of disability and transformative justice.
In the article titled, ‘Moving from loss to richness’ I take you further down my journey of care and talk about how the book ‘Care Work’ by Leah Lakshmi Piepzna- Samarasinha helped me make the transformation to finding value in my being. In our resources, we explore books, podcasts and movies on care you can explore as the lockdown continues. We also share and outline some of the upcoming research on pro-social behaviour which tells us how caring for others has the boomerang effect of improving our own well-being!
We hope the lockdown isn’t too hard on you and everyone is safe indoors.