Simon Baron-Cohen had a piece published in the Guardian today which questions the diagnosis of paranoid schizophrenia on the Norwegian mass murderer Anders Breivik. I posted a response here, with my opinion that the 'diagnosis' is political but also criticising Baron-Cohen for trying to shoe-horn Breivik's crime into his world-view, in which all human actions are explainable through his theories of empathy and systemising. (Any other responses to this, I'd be interested in reading.)
Readers will know their history might have heard of how Napoleon seriously contributed to bringing about his own downfall: he tried to conquer Russia. His troops were obviously nearly all French, and France has quite a mild climate -- parts of it Mediterranean and parts of it influenced by the Atlantic winds. They weren't equipped for the Russian winter, which is bitterly cold and frequently two figures below zero, so they couldn't fight and many of them froze.

A century and a half later, Hitler tries the same thing, and although Germany is further east and its eastern parts (especially then, when they ruled parts of what are now Poland) have a continental climate with cold winters, they were still no match for the Russian winter. Whether Hitler intended to make good his conquest of the near part of Russia or just to murder all the Jews is a matter of debate, but it's generally considered a bigger act of folly than Napoleon's, because the danger to soldiers of being sent into frigid conditions without the right clothing was already known of by then.

This came to mind when hearing about the ordeal a friend with ME in West Sussex is having trying to get treatment for a tooth abscess of some sort which has been causing her serious pain for the past few weeks. They have given her medication to fight the infection, but from what I hear, as soon as she finished the course, the pain came back. They have told her they will not operate on it until January, which is obviously quite unacceptable as she will be in considerable pain in the meanwhile, in addition to the pain and other symptoms the severe ME already causes her. She is bedbound and tube-fed after a major relapse four years ago. The damage to her teeth may, incidentally, be related to sugar-heavy prescription drinks she had to live on in the early stages of her relapse as she was able to chew and swallow solid food, before her swallowing became much weaker and she came to require tube feeding. The problems with her teeth are therefore iatrogenic, so it ought to be up the doctors to sort them out as quick as possible. Since these problems with her teeth started, her activities online have become somewhat sparser, so it's reasonable to assume her ME has got worse, which is understandable as pain is a stressor that can worsen ME (while ME itself can cause extreme pain), and has to be controlled, or its causes dealt with promptly.

Now, a few miles up the road from my friend, there used to live a lady with severe ME called Sophia. And a few more miles up the road there was a lady with severe ME called Lynn. Both of them are dead now, one of them because her mistreatment caused a catastrophic relapse when she had been getting better, the other because years of lying in terrible pain and enduring repeated, traumatic medical crises worsened by medical negligence, perverse disbelief and callous treatment led to her deciding she wanted to die, and ultimately taking her own life. Sophia and Lynn lived in different parts of Sussex to my friend (and to each other), and none of the staff who treated them are dealing with my friend, but surely everyone heard about their stories (especially Lynn's) on the news. In fact, ITV Meridian have covered ME quite a lot beyond these two stories.

The doctors treating my friend must have some idea of what they are dealing with. There have already been two well-publicised disasters involving women with very severe ME in less than ten years. They can surely learn to treat an ME patient decently without waiting for yet another serious tragedy. To send yet another sufferer out into the cold would be not only to make serious mistake, but to make the same serious mistake that someone else made with the full knowledge that it is a serious mistake. Which would, actually, be rather worse than a serious mistake. It would be a crime.
For anyone reading this who has an Android device and wants to post to their Dreamwidth or LiveJournal blog with it, there's a client called Eljay which you can find in the Android Market and which I'm using to type this. Only problem is, it doesn't post private entries, at least not to a Dreamwidth blog - I tested it out twice the other day and both my private test entries went public (good thing they were only test entries and not real private diary entries). It seems to be the only client that supports Dreamwidth properly, but only use it for public blog posts.

Also, don't set it to open with the friend list, as you won't be able to get back to the main menu to post an entry without logging out and back in again.

Update: Sensical have now updated the app and included a fix for the private posting problem in response to my bug report on their LJ page.

Testing

Sep. 22nd, 2011 02:11 pm
Testing to see if posting from this client works.
Where was I on 9/11? I was working for a security company (then known as Securicor Omega, now Yodel) delivering parcels in east London. I drove a 7.5T Iveco and pulled into a housing estate in the Bengali area around Whitechapel to deliver a load of books to an Islamic publishing company called Awakening. The guy who received the parcels told me about the attacks because I didn't have a radio in my truck. I'd heard about the attacks several years before (which Omar Abdel-Rahman, among others, is still serving time for) so I wondered why he was telling me about that now.

I was very worried about the attack on the Pentagon, because I have a cousin (well, a second cousin) who worked there. However, she was not there that day. Later on, I had to deliver to Canary Wharf, and called base to ask if I should still attempt that delivery after what had just happened. They said yes. However, I could not get into it; I arrived near and found all the workers going home.
This is a cross-post to the [community profile] disability DW group; posting it here so my other friends and LJ friends see it.

Hi everyone,

One of my friends has set up a Facebook page to highlight her struggle to have her guide/service dog admitted with her to the rehab facility she is in. Kimberley Robbins, AKA WildKat, is blind (from birth), and has a C6 complete spinal cord injury (since 2004, from transverse myelitis). Although she has been living independently most of the time since initially getting out of rehab in 2005, she has been readmitted because of increasingly severe spasms, which have been causing her injury, and is expecting to have surgery soon.

Kim has had guide and service dogs since before her SCI -- initially a yellow lab named Sophie, which was with her while in hospital after her injury and while in her first rehab placement, and which she additionally trained to do service dog tasks, but which died earlier this year. She had to train Duke herself, because no guide dog school will train a dog to pull someone in a manual chair, only in a power-chair. She refuses to use a power-chair because it will result in loss of the strength she has in her arms

She is in the Miller Center in St Johns, NL (that's Newfoundland in Canada) and the facility is refusing to allow Duke to be there with her. Apparently they allow guide dogs trained in Canada or the USA to stay with patients, but not other guide dogs (Duke was trained in the UK). There is no law to this effect; it's just the facility's own rules. She's asked her friends to publicise her struggle, so this is the page (it's public):

Let Duke the Guide/Service Dog Have Access to the Miller Center
I just published a long article at my main blog, Indigo Jo Blogs, critiquing two of Simon Baron Cohen's books, including his most recent one (Zero Degrees of Empathy, called The Science of Evil in the USA):

Simon Baron Cohen, Autism and Empathy


The WPI are an institute set up at the University of Nevada, Reno, to research into "neuro-immune diseases". The best-known of these is ME, but they also include fibromyalgia, atypical MS, Gulf War Syndrome and ... autism. Yes, autism, which most of those affected who can speak for themselves would say was not a disease.

The WPI put out a video last week, a fund-raising appeal video in which Dr Donnica Moore of said institute said that these conditions could have "debilitating, lifelong consequences for those who suffer from them and those who love them". Autism does not affect people in the same way as any of the other conditions mentioned; it is not inherently a physical illness manifesting in pain, extreme fatigue and sickness and so on. It is a cognitive developmental disorder.

What are the WPI hoping to achieve by this? The ME community in particular puts a great deal of faith in them, as their illness suffers from a serious dearth of high-quality research, which has not been the case with autism. They also risk taking sides in the dispute between autistic self-advocates and major charities, which emphasise the "need for a cure" by portraying autism as a fate worse than death (or severe ME).

Perhaps the purpose is to have a side-line in a well-acknowledged condition so as to avoid being seen as "purely" an ME/fibro research centre, but their background is known to be in ME; they are located in a region known for its association with ME (the Lake Tahoe outbreak in the mid-1980s) and where the illness is taken more seriously than in much of the rest of the world, and was founded by people with a professional or family background in ME, and people with autism are in more need of educational and vocational support, while those who are sick with ME need biomedical research so that effective treatments, or a cure, can be found sooner rather than later.
I met with my cousin and two of my aunts earlier today, and my younger female cousin has some quite strong feminist views and today they held the SlutWalk in London. Obviously as she was in Kingston, she wasn't up in London, and I pretty much asked her why she wasn't there. Obviously that was because I expected her to support something like that (and I think she does), but ... it would have been easy for anyone to think I meant something else! (Like someone who's never heard of the event and the history behind it.)

I never liked the whole SlutWalk concept, but that's one reason I hadn't thought of, until today, why it's a bad idea.
This is a trailer for Voices from the Shadows, a film about severe ME by Natalie Boulton, who edited the book Lost Voices (reviewed by me here), and her son Josh Biggs (her daughter, Anna Biggs, has severe ME herself and is featured in the book). The film features interviews with Kay Gilderdale, Criona Wilson (mother of Sophia Mirza, who died after she was sectioned by doctors who did not believe she had a real physical illness), Prof Malcolm Hooper, Dr Nigel Speight and other patients, carers and experts. The film is not available yet, but is expected to be premiered at a festival later this year.



There is also a Facebook group.
The doctor half of the father-son autism therapy practice, Dr Mark Geier, has had his licence to practise suspended by the Maryland Board of Physicians (he still has a licence in 10 other states, however) after prescribing lupron, a potent anti-androgen drug, to autistic people as part of his theory that testosterone increases the toxicity of mercury. This article explains how Katherine Seidel, the author of the Neurodiversity Weblog and mother of a son with Asperger's syndrome, investigated and posted a "16-part takedown", while others (but not her) contacted the physicians' board.

The article alludes to lupron being used in the treatment of sex offenders; in fact, it's mostly used to treat prostate cancer as part of a combined therapy with cyproterone acetate (Androcur, most commonly sold these days as Siterone). The reason is that lupron produces a "testosterone surge" which can exacerbate testosterone-dependent cancers, while Androcur doesn't. They both have significant unpleasant side effects including gynaecomastia (that's men growing boobs). Depo Provera, the drug which is actually used on sex offenders, reduces male libido without causing these kinds of effects (although some women complain that it reduces their libido as well when used as a contraceptive).

The reason I mention all this is that various different justifications are used for prescribing anti-androgens to both male and female autistics; some are diagnosed with precocious puberty, some are claimed to be aggressive (sometimes sexually so), but the main reason seems to be the one about mercury, although some parents have said that their children have been on lupron for some time, yet the mercury is not being eliminated in their urine. I've heard it said that anti-androgens have been prescribed to control inappropriate sexual behaviour in people with autism, but lupron is completely the wrong drug to use, particularly as it is hugely expensive, costing hundreds of pounds or dollars for a single shot. Clearly the Geiers thought that an expensive drug would give a false impression of good quality.
The Brain Fog

I saw a post yesterday at a disability blog called The Broken of Britain, which brings together disabled people to fight the UK government's cuts to public services, particularly those affecting disabled people. The post was about identifying with the terms "brain fog" and "spoons", and it was written by a woman with EB (epidermolysis bullosa); her usual disability blog is here. I thought this was a misappropriation of both terms.

SE Smith wrote an article a few weeks ago in which she described this as an example of "cuteifying disability", but there is also the matter of the terms being simply misused. They came out of communities of sufferers of debilitating neurological and auto-immune illnesses. Brain fog is particularly prevalent in the ME world and there is an online community called Foggy Friends, but the term is almost ubiquitous and used by those with varying levels of severity. Emily Collingridge, who wrote a book about living with severe ME that was published last year, described it as when one's thinking powers feel trapped in a dense fog, and that any mental activity is extremely taxing.

"Spoons" was coined by Christine Miserandino, who has lupus, and was explained very precisely in "The Spoon Theory" as being able to do only so much in a day before you crash, and I'm not sure what that means for someone with lupus but for someone with ME, the crash can be very severe and leave them bedridden, in some cases permanently. It's not a convenient term for fatigue, even when experienced by someone with a disability. Perhaps if someone has depression alongside their disability that would justify it, but it does seem that people are appropriating terms which belong to one section of the disability community to mean other than what they were coined to mean.

(BTW, I have several friends with ME and a few with other disabilities, but I'm not physically disabled myself.)
Esther Rantzen, for years, has been the go-to celebrity in the UK when it comes to ME, and has written of her daughter's supposed battle with it in the press (mostly the Daily Mail) on a number of occasions. Two separate "cures" have been reported, one involving Cognitive Behavioural Therapy (CBT) and the infamous graded exercises which mysteriously prove so harmful to pretty much every other ME sufferer. The second time it involved the Lightning Process, which is some sort of talk therapy based on neuro-linguistic programming (NLP), life coaching and osteopathy (although those who attended said they couldn't see any evidence of any osteopathy). At times, her evangelising has comfortably crossed the boundary of good taste; promoting this kind of therapy as part of coverage of the story of Lynn Gilderdale, who could not talk and probably could not have made it to wherever they were holding their course, is one example.

Read more... )
I posted an article at my main blog regarding the award given to the director of the BBC's Panorama programme which covered the trial in 2010 of Kay Gilderdale, who assisted the suicide of her daughter Lynn (who had very severe ME) in 2008. The programme caused a lot of upset in the disability community as it was seen as biased in favour of assisted suicide. I thought it was a bad bit of journalism, as it was sorely lacking in any investigative content about ME and why Lynn and others got so ill.

Not exactly medical journalism
I saw a debate recently on Astrid's Journal which was provoked by a story about a young woman in Canada who was abused in a care home by two staff member. Harold Doherty called that an "autism reality" while Astrid ([personal profile] phoneutria_fera ) countered that it was really an "abuse reality" and that blaming the autism was kind of like blaming the victim.

To me, it's true that any situation which requires someone to accept care can lay them open to abuse, and this doesn't have to be a disability. The fact the victim cannot talk, or otherwise easily communicate what's happened to them, may be of help to the abuser but it's not necessary for abuse to happen. I witnessed and experienced (mostly physical) abuse at boarding school, which was ostensibly for kids with high academic ability with behavioural problems. The victims protested "that's assault" and that they had rights, but were laughed at in the face.

And nobody said anything - the first time the situation at my school came to light was in 1992 (after I'd been there for three years, and all this had been going on much longer than that) and even then, the investigation fizzled out. It was in nobody's interests to upset the apple-cart, except the kids' (or rather, some of them), and the kids weren't calling the shots, the adults were.

Autism is not the only disability, but why is it that some people involved in autism are so bitter and vehement about it? We don't often hear this from parents of kids with cerebral palsy - as far as I've ever seen - people saying that the condition is basically evil and has to be eradicated now.  I can understand why some people who are carers for very severely autistic people do not entirely see eye-to-eye with the high-functioning self-advocates, but their hatred for the condition itself is unusual and puzzling.
Nurse investigated after near death of girl

This was the second time there was a story like this involving the same agency's staff (albeit a different branch) nearly killing a ventilator-dependent patient by leaving their pipe off their neck for too long. This little girl (her family's website is here) is able to breathe a little bit so it wasn't quite the disaster it was for the man who got brain damaged, but still ... don't agencies check that someone going to care for a vent-dependent patient has the right training? Is there no way for them to find out?

I've got a friend who is a quad and is vent-dependent (from a car crash which gave her a C1/2 spinal cord injury) and didn't want to FB this in case she read it, but I'm sure this kind of possibility has occurred to her more than once. Makes me wonder what this agency are still doing in business.
In Kingston, near where I live, there is a fried chicken place called Pepe's Piri-Piri, which does a mixture of barbecued chicken wraps, a few Indian curry-type dishes, and a whole lot of standard-issue fried chicken and chips. When I first started going there, they had a "meal deal" for £3.49, which consisted of two bits of chicken, chips, a drink and a little pot of coleslaw. I used to dip my chips in the coleslaw, which added some non-fried vegetable material to the dish so I can tell anyone who asks (like Mum) that I've had a sort-of balanced meal. I quickly found that their chicken and chips combined with a fizzy drink made me want to throw up (and that combination doesn't do that to me anywhere else) so I asked for a bottle of water instead.

Sadly, they changed their meal deals and the nearest thing to that one had two wings instead of the coleslaw, with an increased price of £3.79. I usually managed to persuade the lady behind the counter to substitute coleslaw for wings, "like the old number 5", but it seems she's gone, and I started having to persuade other members of staff to give me the same deal. The other weekend, I went in there and the guy serving me flatly refused, so I walked out in a huff and got a kebab from the Algerian-run kebab kiosk the other side of town. But I decided to try my luck with Pepe's again last night. They do a "mini meal deal" of two pieces of chicken and chips for £2.19.

This time, instead of asking for them to change the meal deal, I added up the cost of the mini meal deal, the water and the coleslaw ... and it turns out, they come to £3.47 - so it seems I'd been begging them to overcharge me for months, all because I was too lazy to look at the price list and work things out for myself! But the kebab was nice and is actually a more balanced meal than a box of fried chicken and chips any day.
Anna ([personal profile] trouble) requested that someone in the UK review this history of British mental health care since the 1950s, which originally went out in May 2010 and was repeated last Friday. It focusses mainly on one asylum, High Royds near Leeds, which opened in 1888 and finally closed in 2003. There are interviews with several former patients, nurses and psychiatrists, not all of whom were committed to or worked at High Royds.

There were three female and one male patient featured. One of the women was a long-stay patient, who was admitted to an asylum near Aylesbury (near London) some time after the War on account of her panic attacks, and remained in the system for more than 33 years. It seems that she was finally discharged during the 1980s, when a lot of long-stay patients were being discharged (but before the big "care in the community" drive of the 1990s). She described the asylum as a place where there was no privacy, with huge numbers of beds in a room placed end to end, and not much to do; she started helping a nurse make the beds because of boredom, turned to drink for much the same reason and ended up in a padded cell after entering the wrong ward and collapsing while drunk. She was given as an example of someone admitted for reasons which could have been treated in the community rather than necessitating a lengthy stay in the hospital; others seem to have been admitted for no sound reason. The regime was dominated by security, with every door locked every time a patient passed through, and high railings surrounding the grounds.

Read more; some descriptions of abuse )

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Indigo Jo

December 2011

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