Inspired by Simon Watney lecture “Disabled Legacies Beyond Activism

I listen to Simon Watney’s important lecture at the Disabled Legacies Beyond Access and Inclusion at the Paul Mellon Institute April 26, about archiving  the HIV aids, history and pandemic. Hearing this succinct history off this experience created an interesting reaction from me. One thing was my complete lack of knowledge about the history, an issue I relate to as very few people have a historical knowledge of my conditions. I will add a caveat that in the 80s I was swiftly heading to the terminal stages of my own illness , that of addiction.

 I wondered about all the lessons that had been learned and how they could be adapted for a person who lives with addiction and chronic illness Iike myself. The Denver principals where completely intriguing, outlining the foundational manifesto for HIV/AIDS activism.  I live with two or three socially unacceptable illnesses. It’s not possible to categorise levels of unacceptable illnesses really. However I am in recovery from addiction for 37 years, a thing that is shamed greatly in our society. I have an illness of an energy limiting condition and fibromyalgia which is also gaslit and spoken about as if it’s a psychosomatic illness.

One thing I’ve noticed is that because of the denial, improvements and research into its care whether it’s addiction or chronic illness, fibromyalgia are not going on in our society at the present time. The number of people suffering from these illnesses is growing and the ability to give care is not growing exponentially. I wonder what it would take, as we already have a pandemic of addiction. To get a comprehensive holistic plan of care for people with illnesses that are not accepted. I am currently receiving Tai chi classes from the NHS! No regular, systemic care at all. At the same time I’m paying for therapy, acupuncture, cranio sacral therapy, osteopathy and reflexology. These are things that I am using to improve my quality of life with the illnesses that I’ve already spoken of. The NHS is not acknowledging these at all and painfully inadequate at working with them to give me holistic care. Really in 26 yrs of Chronic illness and fibromyalgie the only places I have found care is at A&E and the homeopathic hospital (now closed down) and the Integrated medicine hospital with exceptional staff. Thats in 26yrs! Other staff glaze over immediately I identify Fibromyalgia or are condescending about my addiction recovery.I often hear “Well Done”. I’m very interested in patient blaming which goes on all the time and the failure to acknowledge lack of knowledge by professionals, so encouraged to see professional identification of their position as an item in the Denver principles. Thank you Simon, your work has encouraged me to keep creating archival pieces about my lived experiences and to realise how critically important this is historically, an issue that had been hard to keep hold of.

Lesley Illingworth