Dear Cancer Part 3

Suzanne Conboy-Hill:

The odds on surviving cancer are improving but we’re not there yet. Next time you see a tin, think of this and fill it with whatever you can spare. Then see if you can spare a bit more.

Originally posted on drkategranger:

Dear Cancer,

Well, it has been a few months since we were last in correspondence and given this past week’s events I thought it was an opportune moment to put pen to paper again.

I don’t mean to be rude but you didn’t bloody keep your side of the bargain did you?! I asked you really politely to let the chemotherapy subdue you and help me to feel less pain. All you had to do was in essence lose a little weight and go to sleep. Then we could have continued our symbiosis for a good while longer. But you didn’t want to play did you? No doubt for your own dubious reasons.

Scrolling through the CT pictures detailing every nook and cranny of the inside of my body on Tuesday left me feeling deflated to say the least. Perhaps more accurately an overwhelming feeling of “what’s was the point…

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Where’s the ‘vague but exciting’ tick box for today’s research?

“Vague but exciting…” is what Tim Berners-Lee’s boss scribbled on his proposal to build the worldwide web before giving him the go-ahead to start work. If today’s research proposal rules had been in place, I’d argue it might never have happened because, in health services at least, the process has become one of regimented, formulaic stultification. One that squeezes the life out of innovative thinking and pins it to endless rigid forms that will only admit x-number-of-characters-including-spaces. By the time a project has been approved and funding granted, the thing that so excited and wired you up to the mains with creative energy is flapping feebly in a box covered in deadlines, imperatives, shoulds, don’ts and musts. Fiscally responsible, yes, but with about as much punch as a collapsed flan.

Furthermore, worthy and tight as a drum as the poor thing now is, it will be a one-off. There are no repeat grants and this, astonishingly, means that research goes out published with the legitimising tag of having been NIHR (for instance) supported,  but it will never be replicated to further evaluate its findings and replication is fundamental to the principles of validation in research findings.

Yes, we have to be responsible and not cavalier with money, people, resources, and ethics, and there has certainly been good work done by good people via this process. But coming back to true innovation – some of the biggest submitted no bids because they were working out of their bedrooms: Facebook, Microsoft, Apple, Google – who would have been courageous enough to fund those start-ups as research projects? I have no problem with thorough, painstaking, detailed research and the measures put in place to ensure nothing is wasted and nobody harmed. I do have a problem with the loss of a box for the ‘vague but exciting’ proposals that have the capacity to change worlds. Happy 25th birthday WWW, I think we are very lucky to have you. 

Thorpe Park: Royal College of Psychiatrists’ open letter

If you’ve been following the Thorpe Park ‘Asylum’ debacle, this open letter from the Royal College of Psychiatrists may help illuminate the problem. Thorpe Park has, all along, been asked to change, not to close, its ill-advised attraction; so far with no response other than bland platitudes. One hopes this latest reasoned request will finally get through to them. http://www.rcpsych.ac.uk/mediacentre/pressreleases2013/openlettertothorpepark.aspx

For catch-up, much of the debate can be found here where onward links further fill out the debate. The twitter thread, #AsylumNO, has attracted considerable support and inevitably its detractors. Some of these I have found to be reasonable people who, after many exchanges, have become less entrenched in their view that Thorpe Park’s portrayal of ‘mental patients’ may not be harmful. Some though, have been quite astonishing in their capacity to extrapolate beyond the ridiculous, and others have been hateful, offensive, unreasoned attackers. I personally had several exchanges with a person who eventually claimed to be the designer of the ‘rape fantasy experience’ at The Scare Kingdom Scream Park in LancashireHe told me that the Daily Mail had mis-reported, something I am disposed to accept, and said they had many complimentary comments. I asked him to tell me what the experience really was and to point me towards those comments, so that I could pass this along – I’m no more interested in unjustified entertainment-bashing than I am in letting truly horrific and harmful material go by unchallenged – but he chose instead to revert to attacking the objectors.

The RCP open letter is the most recent, and arguably the most high profile, response to Thorpe Park, and one hopes the company will finally be listening.

Supporters of  the ‘Asylum’ maze argue that it is ‘only a few’ who do not see it as fantasy. Mental illness is largely invisible, with people often feeling too stigmatised to talk openly about it. But it affects one in four of us, so maybe it’s only a few till it’s you.

Thorpe Park: the tricky wiki bit they removed

I should have taken a screenshot but I intended to post this clip so I copied it for pasting. The last sentence of the first paragraph along with a summarising link, has been removed [2 below which now points elsewhere]. See Halloween: What’s wrong with evoking the “scary mental patient” stereotype? for an update.

Thorpe Park is a theme park in ChertseySurrey, England, UK. After demolition of the Thorpe Park Estate in the 1930s, the site became a gravel pit. Thorpe Park was built in 1979 on the gravel pit which was partially flooded, creating a water-based theme for the park. The park’s first large roller coasterColossus, was added in 2002. Merlin Entertainments own and operate the park. In 2012 the park received 1.8m visitors, down from 2.0m visitors in 2011.[1] In 2013 Thorpe Park attracted a wave of negative criticism from mental health campaigners for its ‘Asylum’ attraction, which appears to depict people with mental illness as frightening and out of control, reinforcing negative stereotypes around mental health.[2]

Halloween: What’s wrong with evoking the “scarey mental patient” stereotype?

Suzanne Conboy-Hill:

This is an articulate and well-argued presentation of the current (19/10/13) situation regarding Thorpe Park’s ‘Asylum’ experience which is testing the civility of many of us in responding to comments largely, we hope, based in ignorance. Sadly, there are other businesses prepared to offer the same sort of hideous material; the rape fantasy experience – exactly, me too – you’ll see in the post. There’s also Farmageddon which offers both ‘insanity’ and ‘psychosis’ experiences, and at Dinosaur Park, there is an ‘Insanitorium’. Twitter is using #AsylumNO to make its point.

 

Originally posted on Sectioned:

Halloween (2) SEP 2013

Update small

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Update: Scroll down for new additions (flagged with the handy yellow update picture), including links to numerous other people’s posts, a defence by a theme park enthusiast & an overview by a theme park industry website

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On Thursday, it came to the attention of the lovely twitter people that one of Britain’s major theme parks, Thorpe Park, had a “scary mental patient” experience as part of its Halloween offering. It was called Asylum. Just as when, a few weeks ago, Asda, Tesco and Amazon marketed their “mental patient fancy dress costumes”, the mental health twittersphere exploded in protest.

Why? Take a look at this video to see the stereotypical “scary mental patient” scare story played out. “Watch your back as you weave your way through The Asylum, a maze of dead ends and hidden corners.” Who are you to watch out for? The Thorpe Park…

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Dear Thorpe Park: re shockingly insensitive “Asylum” event

Suzanne Conboy-Hill:

This is live on twitter now. Please Hashtag AsylumNo to tell Thorpe Park that this is unacceptable.

 

Originally posted on purplepersuasion:

Dear Guest Services,

I understand that you plan to plan to run a Fright NIght event entitled “The Asylum.” Your website promises “a chaotic environment of noise, light and like action” where guests must “watch [their] back as [they] encounter dead ends, hidden corners and eyes that watch you from the shadows.”

I was deeply shocked when I read this, and expressed concern to your Twitter person, who replied, “The Asylum represents general chaos and scary fun and was never meant to cause offence.”

Do you have any idea what asylums are really like?

I grew up in a village next to a street called Hospital Road, but the older people grumbled because they knew it as “Asylum Road” and they didn’t like change. If you walked along the road for a mile or so you came to a gothic Victorian structure built as an “asylum”. By the time I…

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Facial Disfigurement: a study using the virtual world, Second Life

Facial scar on avatar

We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. … The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes.

 

This is a first for Ether Books: ‘Facial Disfigurement in Second Life‘ is a research paper detailing a study in which participants responded to the application of a facial scar to their avatar. A free download for smartphones. http://catalog.etherbooks.com/Products/3014