Vivint vote appeal, ME and mental illness

Picture of a group from the Whittemore-Peterson Institute posing with a large $100,000 chequeYesterday it was announced that the Whittemore-Peterson Institute in Reno, Nevada had won a long-running campaign for a $100,000 grant from the Vivint home security company (formerly APX Alarm) called the Vivint Gives Back Project. The overall winner was the Foundation for Angelman Syndrome Therapeutics (FAST) which won $250,000, but the WPI won for the Pacific region. This followed a lengthy campaign for votes on the various ME-related Facebook groups and probably others. It was the second of two big vote-based fundraising campaigns, the first being for a grant from Chase Community Giving.

CCG allowed people to vote for five causes each and did not allow people to vote more than once for the same organisation, so there was no danger of splitting the vote and people could choose to vote for other charities besides the WPI which, again, was the intended recipient; these could, of course, be ME-related or not. VGBP allowed only one vote, despite having several regions and therefore several grants, and allowed people to vote every day. This had two effects: one was that people were deluged with vote requests as people allowed “I voted” announcements to appear on their Walls every day and posted the appeals to the ME group Walls as well; the appeals were usually for the WPI although there were two other ME charities nominated. The second was that those who supported other charities were accused of splitting the vote, as a vote for another deprived the WPI of votes and made it less likely that any ME research or support charity would win a grant. There were those this pressure did not affect; they would never have voted for the WPI anyway as they simply do not believe that the WPI’s research into retroviruses is of any significance, but others were being told not to support their charity as it would harm another.

I think organisations should reconsider this method of deciding how to hand out grants. For them, it’s small change and a PR boost. For the support groups affected by the relentless fundraising appeals, it’s a distraction from discussing their illness, and a source of recrimination and division. When we give money to charity, we do not usually have to choose one charity or another; if we have the money we can give to two, or we can give half and half and they both benefit a little. Charitable appeals should not be run like a general election in which a vote for one candidate is a vote against another, and a situation in which a charity only receives a grant because its support network was willing to disrupt its normal operations for months and have its message boards filled with “vote, vote, vote!” demands, and may even collapse in mutual recriminations, making further fundraising activities difficult or impossible, is highly undesirable. It may be prudent for some groups, particularly if support is their main aim, to ban the appeals altogether, particularly the endless repeats — after all, readers will almost certainly see the publicity elsewhere.

During the recent Wessely death threat saga, I saw a tweet from Hilary Johnson claiming: “The problem is not that mental illness is stigmatized; generally, it’s not. The problem is, myalgic encephalomyelitis is stigmatized”. This is a profoundly ignorant statement; mental illness is stigmatised on numerous levels — from the number of derogatory words in the English language that refer to mental illness in some way, to the difficulties people with such illnesses (or who have ever had them, even if they were resolved years ago, and even if they harmed nobody and the illness was something like anorexia nervosa or depression) in getting work or even a driving licence, through the fear people have of those who talk to themselves or display other apparent signs of mental illness, as if such a person was just ready to get up and stab them. It is not that one has a stigma and the other does not; rather, the stigma is different. People fear those with severe mental illnesses, admittedly often wrongly, but blame those with ME for exaggerating their illness or not wanting to get better, and the association with psychological causes has led to a lack of effective treatments. Meanwhile, the physical bases of real mental illnesses are well-acknowledged.

More than once lately we have heard politicians or the media respond to complaints from people with ME that they are seen as mentally ill with talk of the prejudices against real mentally ill people. If these people really want to campaign against such prejudices, and they have a seat in Parliament or a desk at a major London newspaper, they should not expect those confined to a bed in a small dark room in some faraway small town to do it for them. We often find that people expect the weak and downtrodden to be more high-minded than those with power, criticising (or even punishing) the bullied school-child for hitting back or using a swear-word at his tormentors, while doing nothing to actually help them. We saw this attitude displayed by Paul Burstow, in his response to the question from Ian Swales in February; how much campaigning has Burstow ever done on mental illness?

In any case, the treatment meted out to some ME sufferers on the basis that their symptoms are of a psychological origin would be every bit as unacceptable and cruel if the theories were true. If you really believe that someone who displays a very severe illness, causing them to have fits, not recognise people, vomit frequently and violently, and to be unable to swallow or sit up, is reacting to the trauma of a sexual assault (as was said of Lynn Gilderdale), then one would expect that you would treat her with some degree of compassion, not attempt to brutalise her as if that would make her any better. The prejudice against ME is not that it is a serious mental illness such as bipolar disorder, rather that it is a minor psychological problem, a behavioural issue that can be dismissed, or else beaten out of them. Neither this, nor the very serious and demonstrable physical abnormalities found inside ME patients both during their lives and after their deaths, was discussed during the Wessely controversy recently, despite having been in the news at least twice since January 2010.

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