Article written by Sian Leary and Nathalie Wright | Photo credit: Paula Peters
On 22nd July, Deaf and Disabled people from around the world gathered in East London in solidarity to discuss countering oppression and coordinating resistance, especially in the light of austerity and the rise of the far right.
Nathalie Wright from #MEAction Network UK was invited to give a brief speech as part of the ‘Austerity and Resistance in the UK’ session. She spoke about the PACE trial, and about how the ‘biopsychosocial’ model shifts the blame for not getting well onto the patient. See her speech below.
Disabled People Against Cuts (DPAC) – a UK-based organisation that campaigns against the impact of government spending cuts on the lives of disabled people – organised the event.
The summit was held in response to the UK government’s decision to co-host a Global Disability Summit, despite being found responsible for grave human rights violations of disabled people by the United Nations Convention on the Rights of People with Disabilities.
Disabled People Against Cuts said: “The UK government has used international work to cynically deflect from criticisms of their disability record in the UK.”
Some impressive international activists spoke at the summit, including Felizia Ali Ramos and Marcelo Vazquez Bracamonte from Bolivian organisation, New Hope, whose group members suspended themselves in wheelchairs hung from a highway bridge before marching for 35 days through the mountains to reach the capital, La Paz, and demanding an increase in monthly disability benefits. They were met with tear gas, walls of riot shields and police violence, yet have woken up both the Bolivian people and media to the disgraceful treatment of disabled people.
There was a minute’s silence for the six activists who died while protesting.
Greek Zero Tolerance member, Antonios Rellas, spoke of his organisation’s ongoing fight against the institutionalisation of disabled people and how disabled activists are at the forefront of anti-fascism. Read about this and more here.
For a full list of the day’s speakers see here.
Nathalie Wright from #MEAction Network UK gave a brief speech at the summit: (Note: this transcript has been edited for clarity.) Follow her at @_NathalieWright
“Hello everyone, what a fantastic event! I’ve learnt so much already and I feel honoured to be here.
So, I am Nathalie Wright. I am a writer, journalist, sometimes activist. More recently, I’ve been doing work specifically around ME, which stands for Myalgic Encephalomyelitis and my organisation is #MEAction. We’re a grassroots organisation and we organise around the world. We’re made up of volunteers, empowering each other in the fight for health equality, which is sadly lacking.
I am really interested in bridging the gap between chronic illness and the disability community more widely because we all face disablism. Sometimes it looks quite different but we have all got a common enemy, so I am really interested in how we can unite together.
Specifically on austerity, I would like to briefly talk about how that relates to ME. Welfare reforms have contributed to the oppression of people with ME very particularly. There was a trial called the ‘PACE’ trial which is the only medical trial ever funded by the DWP [Department of Works and Pensions]. Rings alarm bells already, right? This trial was to be a test case for the ‘biopsychosocial’ model. I’ve seen a few nods around here. We’re all aware of this model. Very simply this is a model of illness used as a way to shift the blame onto the patient in the expectation of recovery. So if you don’t get well then that’s your fault, you don’t deserve benefits. In fact, some scientists who adhere to this ideology say that benefits are what keep you ill in the first place. The benefits are just encouraging you to remain sick.
The PACE trial recommended exercise and CBT [cognitive behavioural therapy] for ME patients which is contraindicated and makes a lot of people worse. Children are disabled, sometimes literally for life, because of these treatments. The government has a lot to gain from denying the reality of some illnesses and the extent of people’s needs. For example, 75% of people with ME are unable to work, 97% experience two or more care needs but only 6% get care. Recently, Carol Monaghan MP called the PACE trial, “one of the biggest medical scandals of the 21st century.”
I’d really like us to keep talking about the PACE trial and science more generally. You can talk about government but we need to talk about how science itself [as an institution run by people, who are, by their nature, fallible and bring their own prejudices and motivations] and different institutions, are linked and implicated in oppressing people. Some people in the LGBTQI+ community who also have ME have drawn parallels between conversion therapy and therapies to cure people of ME where you are ‘talked out of it’ – in this case, told to ignore your symptoms; that you’re not really ill, just push through it – which has a devastating impact.
To conclude I really want to offer my solidarity towards all the disability groups here and want to note the similar pressures we face, such as testimonial injustice which is often faced by people with mental health problems. Also, it’s important to remember that many people have multiple disabilities; for example those with ME or other chronic illnesses can also have comorbid mental health problems. The suicide rate for people with ME is almost seven times higher than that of the general population.
So I really want to build these coalitions across different groups and I want to end by saying thank you everyone so much for today.”
We hope Nathalie will be able to write in more depth about her experiences of the summit soon. At #MEAction, we look forward to forging links and working in solidarity with the other incredible organisations represented at the event. Together with disabled people across the globe, we say: nothing about us without us.
Support the work of #MEAction UK by donating to our crowdfunding campaign to help us hire our first, on-the-ground UK coordinator.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the