M.E. awareness day: the Politics of Disability

For M.E./Fibro Awareness Day 2010, I wrote a piece entitled In Denial, in which I described some of the methods used to discredit M.E. patients. In the wake of a medical breakthrough which linked M.E to a retrovirus, and the starkly contrasting PACE Trial, which purported to show that a complete recovery could be attained by the simple application of GET and CBT, the attacks have only intensified. According to Invest in M.E., the editor of The Lancet (where the results of the PACE Trial were published) described patient advocates as a very damaging group of individuals, who have distorted the debate. An Irish doctor was only honoured, your honour, to help out, and launched an attack on patients in the Irish Medical Times. The sexist subtext to the debate that I described in last year’s post is particularly present in Dr Monaghan’s opinion piece. It is a revival of the propaganda historically used to silence and marginalise women and the mentally ill. It is the sneer of the privileged at the vulnerable, intended to exploit feelings of powerlessness and arouse helpless anger.

As with the best propaganda, there is a grain of truth here. Among the effects of this multisystem disease are emotional liability and a loss of cognitive function. The struggle for articulacy and the occasional tendency to lash out can tell against us, a problem addressed by the CFS Report. One reason for the upsurge in attacks against advocates for M.E. is that, thanks in paret to the positive publicity gained by the work of the Whitmann-Peterson Institute, years of tireless work by patients, their carers and a group of courageous and hard-working medical experts, is starting to pay off.

The essential point to realise is that this is a political issue, and these tactics would not be used if it was not important. While the resistance to recognising M.E. is widespread, this particular language of abuse originates with English and Australian psychiatrists, many of whom, coincidentally, are bound to insurance companies. The PACE Trial cynically presents the notion, against reason, experience and several scientific trials, that patients with a chronic disease can recover by retraining their muscles and their brains. It is absurd, but there are interesting historical parallels. Jay Winter argues that, in certain places and at certain times, “shell-shock” ceased to be a diagnosis and became a metaphor. As Joanna Bourke shows, British soldiers affected by shell-shock were seen as abnormal: a cure entailed the recovery of “natural” masculine bellicosity. Shell-shock, then, was not so much an illness as a moral failing, which encapsulated the threat to Empire. Soldiers, post-war, were often treated as malingerers, their illness present but not real. Modern psychiatrists wield the threat of illness fakers, social welfare frauds who threaten to bankrupt the state (while bankers and politicians plunder and sell its resources), of working women who will cease to bear the disproportionate burdens that society places on them.

We exist, but we are not acknowledged. When we tell doctors that something is wrong, we might as well not have spoken. After years of crippling pain and the refusal of Australian authorities to provide treatment, Theda Myint tried to commit suicide and was committed to a psychiatric facility. The facility refused to provide any medical care whatsoever or to provide food that she could eat given her food intolerances.

M.E. is a disease that brings suffering, financial hardship, reduction of life expectancy and sometimes death. There is a choice between easing or ending this suffering, or increasing and prolonging it for financial gain. Few things are black and white, but this stands starkly as a modern human rights matter, perhaps marginal, but no less important for all that. This issue highlights the vulnerability of disabled people in general, and their potential to be abused and discriminated against. The greater exposure of M.E. issues highlights the debate occuring at the moment in the M.E. community about the need to discover a common platform to speak from a position of strength and the consiousness of right, for those who are unable to speak for themselves. That is the mark of true civilisation.

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5 thoughts on “M.E. awareness day: the Politics of Disability

  1. I FEEL FOR YOU DEEPLY AS I SUFFER WITH FIYBROMYALGIA. I AM LUCKY TO HAVE A GOOD CONSULTANT WHO BELIEVES IN THIS CONDITION AND TREETS ME WELL. I AM SO SORRY FOR THE MANY WOMEN I TALK TO IN DIFFERENT GROUPS WHO HAVE VERY MUCH THE SAME AS YOU, A DOCTOR OR MEDICAL OFFICER WHO THINKS IT IS ALL IN THEIR HEAD. AS YOU PERHAPS KNOW, CHRONIC FATIGUE IS VERY MUCH A PART OF FIBRO AND I FEEL THAT MANY ASPECTS OF M.E. ARE ALSO.

    PEOPLE WITH FMs ME and CRS ARE QUITE OFTEN CHARGING AT BRICK WALLS. I KNOW WE HAVE DIFFERENT GROUPS AND ORGANISATIONS, HOWEVER, I FEEL IT WOULD BE OF GREAT BENEFIT TO HAVE ONE VOICE AND PUT FIBROMYALGIA M.E. and CHRONIC FATIQUE SYNDROME ALL TOGETHER AND THEN RAISE UP AND DEMAND WE ARE BELIEVED AND TREATED MEDICALLY AND MOST IMPORTANTLY OF ALL, ALL THOSE SYNDROMS OR CONDITIONS SHOULD IMMEDIATELY BE PUT INTO THE DISEASE CATAGORY, ENABLING PEOPLE TO COLLECT DISABILITY ALLOWANCES/BENEFITS WHERE NECESSARY. BECAUSE ONE SIMPLY CANNOT WORK, ONE CAN BEARLY FUNCTION OR EVEN GET OUT OF THE BED WITH THE ABOVE NAMED ILLNESSES. THAT, I FEEL IS CRYTICAL TO OUR NEEDS.

    THANK YOU FOR LETTING ME SPEAK.
    (I KNOW I AM IN CAP’S AND MY SPELLING, MY EYE SIGHT IS NOT GREAT)
    SUZY

    • Suzy, sorry I forgot to reply to your comment. I think your idea of a single organisation, or rather a common platform (if there’s anything ME organisations are known for, it’s infighting, and I’m sure you’ve probably experienced it too) for ME and Fibro would be a very good one. I also agree about making it political. ME organisations, to a great extent, haven’t done this, and it’s left to individuals.

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