“institutionally ableist ” – Schools OUT’s Adam Lowe on the ME Scandal

Schools OUT UK Committee member Adam Lowe has made a stinging attack on the health system over its treatment of people with Myalgic Encephalomyelitis (ME).

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Adam, an author, poet and journalist who himself suffers from the condition, compares the lack of knowledge and mistreatment of sufferers with the early ‘treatment’ of LGBT people and implies institutional prejudice.

Contributing to an article in the Independent online, published to coincide with the release of the documentary Unrest, Adam  is demanding accountability:

“One of the most common misconceptions about ME patients is that we’re anti-psychiatry and resent all treatments that imply even a partially psychological cause for the illness. This is another myth that needs to be challenged. I’m a strong believer in adequate mental health provision for everyone as are most ME patients.

“We live with this illness in the dark, hidden in our bedrooms, desperate for answers. We can’t get proper treatment because they tie up limited national resources in endless, useless studies that conflate long-term fatigue with the very specific neuroimmune illness ME. They continue to harm and insult us, the way the LGBT and civil rights movements were harmed, denigrated and insulted in decades past. They are institutionally ableist in the way the Met was once labelled institutionally racist after the Stephen Lawrence inquiry. The only difference is that we die quietly, in the back rooms of our house, because of lack of proper care or effective treatment. No one sees, so the outrage is confined to those of us who know – those of us who already have this illness, and those who love and care for us.

“Eventually, I think, the small cabal of people setting the negative medical and social narratives about ME will have to wake up and apologise for the harms they’ve caused to hundreds of thousands of people – just like psychiatrists recently apologised to LGBT people. History will not show them favourably, because I believe that justice will prevail in the end.”
 The article also shows how private insurance companies and our new mental health tsar have been undermining the NHS and working with the DWP to deny people benefits. To read it in full and to see the trailer of Unrest, click below.