Ayn van Dyk: seized for no reason, spends 10th birthday in care

Single father fighting to get autistic daughter back

This report tells part of the ongoing story of Ayn van Dyk, who was seized from her home, which she shared with her father and two brothers, after briefly going missing. She has severe autism although academically, she was (at least before being traumatically taken into care from school) close to her age group. The local authorities do not claim that Ayn was in danger from her father, Derek Hoare, but simply that her care was too much for him to manage along with two other children, one of them also autistic. They are still living with him. (Their parents split up some years ago, and she still sees all of the children, and has visited Ayn in care - the article explains why her father has not.)

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Posted in Asperger's / autism | Tagged | Leave a comment

Yes, but do they have ME?

Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics (at BMJ Open)

This morning several news sources reported that a study had been published by BMJ Open (the open-access section of the British Medical Journal’s website) which reported that around 1% of children (that is, 28 out of a sample of 2,855) were missing more than 20% of school over a six-week period due to what they called CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis — interestingly, they do not call it Encephalopathy). Reports included this one from the BBC, this one from the Daily Mail (which gets points for featuring a genuinely sick-looking child, not a model pretending to be a bit tired), this one from the Telegraph, this one from the local Bath Chronicle and this one from the Guardian. The Guardian’s has a case study and the BBC’s report has an interview with Mary-Jane Willows of AYME, and a teenage girl sufferer.

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Posted in M.E. | Leave a comment

Why do lads’ mags offend more than the words of rapists?

Are sex offenders and lads’ mags using the same language? - University of Surrey - Guildford

A recent study carried out jointly by the universities of Middlesex and Surrey in the UK (press release above is from Surrey) have found that, when presented with quotes from lads’ magazines and from interviews with convicted rapists, men have difficulty working out which is which, is likely to identify more with a quote he believes is from a lads’ mag (which stands to reason, really) and often think that the quote from the lads’ mag is more offensive than the one from the rapist. Jezebel has a list of some of the quotes, with the answers at the end.

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Posted in Crime, Gender | Leave a comment

Review: Voices from the Shadows, British Library, London

Yesterday I finally got to see Voices from the Shadows, a documentary about severe ME produced and directed by the same people that produced the book, Lost Voices, (reviewed here) which told stories by a number of people with ME (mostly severe ME). This film, although including pictures that appeared in Lost Voices, concentrated on five people, all but one well-known to the ME community: Lynn Gilderdale, Naomi Whittingham, Linda Crowhurst and Sophia Mirza, as well as a young girl referred to only as “B”, who fell ill aged eight and is still severely affected at age 15. This is the last of four showings of the film, which previously showed in Norwich, at the Mill Valley film festival and at the IACFS/ME conference in September; the mother-and-son team behind it are currently looking at an American distribution prospect before considering a DVD or download release. (Other reviews: CFS Patient Advocate, Jenny K Rowbory’s dad, It’s Only ME …, Thoughts About ME.)

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Posted in M.E., Reviews | Tagged , , | 4 Comments

Baron-Cohen on Anders Breivik

Anders Breivik in a red coat, being accompanied in a car by a Norwegian policeman with a red and gold badge with the word "Politi" underneathAnders Breivik: cold and calculating, yes – but insane? (from today’s Guardian)

This article by Simon Baron-Cohen appeared in today’s Guardian and questions the diagnosis of paranoid schizophrenia given him by “independent” experts in a 1,518-page report this week. According to him:

This diagnosis … has surprised some people following the case because the 1,518 pages of Breivik’s manifesto do not appear to be the incoherent output of “thought disorder”, but instead read like a rather linear, carefully crafted tome. It is the work of a man with a single vision, a single belief that he wishes to prove to the world in exhaustive detail, and in a logical fashion.

That most people would find his reasoning deeply offensive, and his actions on 22 July monstrously horrendous, is a separate issue. The question remains whether a man who is so cold and calculating in executing his logical plan is sane or, as the court psychiatrists have suggested, insane. If this is confirmed, his thoughts and murderous actions are to be viewed as the products of a mental illness, requiring treatment in a hospital rather than punishment in a prison.

Baron-Cohen was interviewed in a Norwegian newspaper the week after the crime as he had just published the Norwegian translation of his book Zero Degrees of Empathy / The Science of Evil (the latter being the American title), which I reviewed here in June. He diverges into a discussion on cognitive and affective empathy; cognitive empathy (being able to discern others’ emotions and put yourself in their position) is impaired in autism, while affective empathy (being affected emotionally by others’ suffering) is impaired or absent in what he calls antisocial personality disorder, a subset of which is psychopathy. While not speculating on Breivik’s diagnosis, he writes that low affective empathy is necessary to bring about such an action, although it does not explain it entirely; his ideological convictions clearly played a part also.

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Posted in "Eurabia", Asperger's / autism, Terrorism | 1 Comment

Will they bring the popular press to heel this time?

Picture of Lord Justice Leveson, chairing the Leveson inquiryRecently, there has been much coverage of an inquiry, known as the Leveson inquiry after the presiding judge, into improper practices at a number of British popular newspapers. This started when it was revealed that the News of the World had employed private investigators who tampered with the voice-mails of not only celebrities but also victims of prominent crimes and other ordinary people, a practice which had gone on for decades, which in one case led the parents of a murdered schoolgirl (Milly Dowler) to believe she was alive when she in fact was not. Recently, a number of those whose lives have been damaged by press malpratice have been giving their testimony.

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Posted in Media | Leave a comment

The Bowes-Lyons at Earlswood: “a peg to hang it on”

Picture of Katherine Bowes-Lyon, first cousin of the QueenTV review: The Queen’s Hidden Cousins; Waking Up To Insomnia; Symphony | Television & radio | The Guardian

Last night I saw a documentary on Channel 4 titled The Queen’s Hidden Cousins (that is a link to 4OD, where you can watch it, if you’re in the UK, until about this time next month), which was about two women from the Bowes-Lyon family, the family of the late Queen Mother, who had learning disabilities and spent most of their lives in an institution for “mental defectants” in Earlswood, Surrey. One of them is still alive and, since the closure of Earlswood, lives in a nursing home; the other died in 1986 and was buried in a pauper’s grave, attended only by nurses from Earlswood. Neither of them ever received visits from their family. The review linked above condemns the programme for failing to bring any new information about the Bowes-Lyons themselves that has not already been known since the 1980s, when news of their situation became public. However, the review totally ignores sections of the programme that deals with the history of care for those with learning disabilities in general, which may have been intended as the real focus of the documentary: in broadcasting terms, the Bowes-Lyons’ story was “a peg to hang it on”.

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Posted in Disability, Reviews | 2 Comments

Baroness Warsi and Anjem Choudhary: takfir on demand

Picture of Baroness Sayeeda Warsi, a British Tory politicianLady Warsi: extremists forfeit their right to call themselves Muslim | Politics | The Guardian

Baroness (Syeeda) Warsi recently said in an interview with the Guardian that Muslim extremists such as Anjem Choudhary, who led the group which was threatening to outrage the public with a counter-demonstration on Remembrance Sunday until it was banned late last week, forfeited the right to call themselves Muslims. Her reasoning is pretty extraordinary: in a video interview with John Harris, she says:

From the Islam that I have been taught, and grown up with … and most people have been bought up with, it has to be rationed, reasoned, contextualised. Now if you detach reason from religion, then you are no longer a follower of that faith. If you are a follower of a religion that is so clear in its support of humanity [and you behave the way they do] then you are no longer part of that faith.

Asked specifically about Choudhary, she alleged that “nothing about the way they conduct themselves is in accordance with the teachings” and that “the minute they detach reason from religion, they’re not part of that faith any more”.

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Posted in Extremism, Tory stuff | 8 Comments

Daily Mail advocates waste of taxpayers’ money

Daily Mail's front page from 11th November 2011, showing headline 'Disabled Benefit? Just fill in a form'Disabled benefit? Just fill in a form: 200,000 got handouts last year without face-to-face interview | Mail Online

Throughout today, I’ve been receiving tweets with the hashtag #MyDLA, from people telling what the benefit (Disability Living Allowance) does for them — usually paying for vital care, a wheelchair, a hoist to get them in and out of it (and bed, and toilet), electricity for their ventilator and feeding pump, incontinence pads and other costs incurred by being disabled; one woman with severe ME said it helped keep her and her widowed mother alive. The cause was the above article, claiming that the vast majority of claims for DLA are paid out on the basis of “filling in a form”, without any need for a face-to-face interview. The Mail surmises that much of it is paid out without justification, with a possible waste of billions of pounds of taxpayers’ money. (More: Flash Bristow @ Where’s the Benefit?, Full Fact, Latent Existence, Well Fair System (originally at Wheeling’n’able), Behind the Child.)

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Posted in Disability, Media | 2 Comments

How dangerous are 80mph motorways?

Recently the government has been debating the possibility of raising the speed limit on the motorway to 80mph, it seems largely on the grounds that most people who can do that speed on the motorway will do so, and according to Prof Stephen Glaister of the RAC Foundation, the motorways are Britain’s safest roads for all that. Last weekend there was a massive accident on the M5 motorway, thought to have been caused partly by a bank of smoke which came across the motorway from a nearby bonfire. In yesterday’s Guardian, Peter Wilby noted in yesterday’s Guardian that politicians are often wary of giving out “wrong signals” when it comes to the classification of drugs, for example, but are reckless about what signals they give motorists: in this case, that speeding is acceptable.

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Posted in Road Life | Leave a comment

BBC bashes benefit claimants two weeks running

I’m a little late writing about this, but I watched John Humphries’ programme on BBC2, The Future State of Welfare, a few days after it was broadcast (I was working a night shift the actual night), and last week the BBC broadcast a Panorama programme, Britain on the Fiddle, which exposed people claiming benefits while driving Bentleys, owning yachts and houses in France, and running pubs. In between the “damning exposé” of the wealthy benefit cheats, they also showed people being caught using blue (disability parking) badges illegally (in one case, when the disabled person was not present). This was obviously done to make it look like the programme was defending the interests of “the little people” against the cheats, but it was entirely irrelevant to the rest of the programme.

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Posted in Disability, Media, Recession / Credit Crunch, Reviews | Tagged , | 1 Comment

A ghoulish hobby

Picture of Samantha Hall with a presenter from Fox 23 TVLast night I watched a programme on BBC Three titled “Stormchaser: the Butterfly and the Tornado”, about a woman with EB (a skin condition) who goes storm-chasing in America. (You can watch it on iPlayer in the UK here until 12th November, and there is a 3-minute clip of it here). The programme follows Sam Hall, who is editor of the International Journal of Meteorology, and her brother on a journey of hundreds of miles across Oklahoma and other mid-western states as they chase after storms reported on his mobile computer equipment. They end up driving into one of the country’s worst ever tornados, with one town they visit devastated and the other having a very narrow escape. (More: LisyBabe).)

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Posted in Disability, Reviews | 2 Comments

How severe is severe?

In July 2011, a new set of criteria for diagnosing ME were published, under the authorship of most of the major researchers involved in the ME or “CFS” field (Byron Hyde is absent, however). It is based on the former Canadian Consensus Criteria with some modifications, notably the use of the term myalgic encephalomyelitis and a decisive rejection of the term Chronic Fatigue Syndrome, or even the combination of the two, and the abolition of a requirement for the disease to be established for six months. The criteria have received enthusiastic acceptance from most of the ME community although there are some dissenters.

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Posted in M.E. | 2 Comments

Android apps that suck

Screenshot of the Swiftkey keypad on an Android phone, from the Android MarketOf late, I’ve noticed that the Android apps I’ve been using aren’t performing anything like as well as they should be. I got a Samsung Galaxy S phone in May, which I paid up-front for because I couldn’t wait until I was due an upgrade (which is this December) as my old phone, a HTC Hero (branded T-Mobile G2 Touch), was so long-in-the-tooth and its upgraded version of Android was full of bugs. The new phone performed a lot better, but I quickly found that the new breed of apps were buggy, slow and all have obvious missing features, such that none of a group of competitors produces a satisfying product.

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Posted in Android | 5 Comments

The small creditors

In the days since Col Gaddafi was killed, I have noticed that the western media are obsessed with ensuring that Libyan officials answer to western courts for things the régime did in the 1980s in Europe, such as the murder of WPC Yvonne Fletcher in 1984 and even the Lockerbie bombing (in which their involvement, and that of Abdul-Baset al-Megrahi who is currently terminally ill, are heavily disputed). People have expressed huge regret that Gaddafi was killed, rather than taken to answer before a court for his crimes. The latter has been expressed by Libyans as well, particularly given that his death would stop him exposing the crimes of those who defected to the new régime during the war, but coming from westerners it always seems to refer to their involvement in international terrorism, not their repression and mass murder against Libyans.

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Posted in Muslim world | 1 Comment

Why some people find the “mong” joke funny (and some don’t)

Ricky Gervais on stage in 2007, doing an impression of an ME suffererThis past week, Ricky Gervais offended an awful lot of people with a joke about a “mong face” on Twitter. “Mong”, for those who still don’t know, originally meant someone with Down’s syndrome, back when the term for the condition was “Mongolism”, which people from Mongolia took some umbrage to (or perhaps people realised that it kept getting shortened to “mong” which came to be used as a general term of abuse, particularly for any disabled people). He was taken to task about this by a number of people, notably Richard Herring who eventually wrote this blog article after receiving hundreds of hateful tweets from Gervais’s fans; disability rights campaigner Nicky Clark wrote this piece for the Guardian, and eventually had an exchange of tweets with Gervais himself, recorded on her blog here, in which Ricky seems to have wised up to the fact that he got it wrong (having previously claimed that those who were against him were just envious of his success). I’m not sure how convinced I am by his apology, because he has done this in the past.

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Posted in Disability | Leave a comment

PCC throws out complaints over ME reporting

Edited version of the Press Complaints Commission's logo, "Fast, Free and Fair", with the latter word partially rubbed outOver the past summer, a number of newspapers and broadcast outlets claimed that some so-called ME researchers had been receiving death threats from so-called militant ME sufferers, such that some had abandoned the field, in one case claiming he found it safer working with the armed forces in Iraq and Afghanistan than with ME patients in London. Accusations were made that the “militants” attacked researchers because their research failed to find what they wanted it to find, usually meaning a link to the XMRV retrovirus (which was rarely if ever named in the reporting). This led to a series of bigoted opinion pieces, notably one by Rod Liddle, and a fawning interview in the Times with Simon Wessely, who was also given a space for an article in the Spectator. Almost no space was given for a right to reply by patients or anyone else giving the other side of the story (the Spectator being an exception, which printed two substantial letters in reply to Wessely). Invest in ME filed a complaint with the Press Complaints Commission, a “self-regulation” body funded by the companies which run the papers themselves, which published its decision on the 18th; you can find the PDF here. The short version is that in every case, they either found no breach of any code, or refused to make any decision.

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Posted in M.E., Media | Leave a comment

Likening ME to AIDS is irresponsible

Picture of Hillary Johnson giving a speech at the Invest in ME Conference in London, May 2011I recently received my copy of the conference DVDs from Invest in ME, which had its annual conference in London in May, but held up distribution of the DVDs because one of the presentations contained clinical trial findings which are still under embargo (they do not appear to be taking new orders for the DVD set at present, probably for this reason). Of the talks I have already watched, there is an excellent, 30-minute talk by David Bell, a physician whose practice in Lyndonville, New York, treated many of the victims of an outbreak of ME in the 1980s; he talked about “health identity confusion”, in which patients who are still very ill might report that they are in good health as they have adapted to their changed life circumstances, and might be carrying on what they consider productive lives mostly from bed, as does one patient he discussed. This kind of behaviour may skew the outcome of studies, and indicate that a proportion of ME sufferers are healthier than they really are. However, there was one talk that needs a serious answer, as it made claims which sound a lot like irresponsible scaremongering.

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Posted in M.E. | Tagged , , | 22 Comments

BBC management to gut local radio

Picture of Broadcasting House in London, home of BBC LondonMy favourite radio station is BBC London. I’ve been listening to it for years, and while there are a fair few presenters I don’t like, there are some highly interesting programmes about local issues and local interest, like Robert Elms’s show on weekday afternoons, which have kept me listening for a number of years, particularly during the time I’ve spent driving for a living in London. A recent proposal by the BBC’s trust, which is aimed solely at saving money as the licence fee is to remain at £145.40 for the next five years, to pay for the Welsh language broadcaster S4C as well as the World Service as well as its current responsibilities, would see localised programming ended for much of the schedule, and would no doubt see a number of much-liked programmes disappear for good.

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Posted in Media | 3 Comments

Young adult marriage visa ban: unjust, now unlawful

Picture of the British Supreme Court in Parliament Square, LondonSupreme Court overturns non-EU young spouses ban (from BBC News)

The UK Supreme Court has ruled that a government ban on British citizens bringing spouses under the age of 21 from outside the EU to live in the UK, introduced under the Labour government ostensibly to prevent forced marriage, is unlawful. The court heard that two couples, one including a husband from Chile and the other with a bride from Pakistan, had been separated or forced to live outside the UK for extended periods, in one case resulting in the British spouse losing a university place. There was also a challenge from a British-Canadian couple, who were separated as the Canadian wife could not come to live in the UK and the British husband could not find work in Canada.

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Posted in Civil liberties, Gender, Terrorism, Think tanks | 1 Comment